Botox

CLICK TO RATE 
  • Author
    Posts
  • #40353
    Profile Photo
    Editorial Team
    Participant

    Welcome to the Botox Forum

  • #41651
    Profile Photo
    Lori in PA
    Participant

    Well, not much activity here yet, but I wanted to recount my own story and say that if anyone has questions, they can contact me. I had my first Botox treatment two weeks ago and am hopeful at this point.

    A typical month for me features 10-15 full blown, incapacitating migraines as well as chronic daily headaches. I woke up every morning with a headache. After my Botox, I’ve had one mild migraine (I was able to function, but it was difficult) and one tension headache. Most days I wake up feeling good.

    I’m keeping track of the headaches for my neurologist, who explained that the full benefit of Botox might not be felt until I’ve gone through 3 rounds of treatment. At that point, I’ll have reached a plateau of “maximum benefit” for me and can decide whether it is worth continuing. He also explained that while most people respond well enough to stop all over medications, in some cases people continue with their daily preventatives as an adjunct.

    The procedure doesn’t take long – maybe 10 to 15 minutes. It’s uncomfortable, but not unbearable.

    Please feel free to ask questions if you have them, as I am quite excited about this new treatment. After 30 years fighting migraines, this may be my best hope.

  • #41652
    Profile Photo
    Ellen
    Participant

    Lori, thank you for recounting your experience here. Now that Botox has been approved, I am hoping more patients will have the opportunity to try it, and that it might make a difference for them.

    It is worth noting that patients can become immune to the Botox therapy, so it should not be taken lightly. Thankfully, there are two other strains of Botox-like injections that have been developed for use in these patients, but patient reports seem to indicate they are more painful. Botox certainly shouldn’t be considered a first line treatment, but I’m definitely glad it’s at least in the mix! Hoping I’ll have the opportunity someday to try it too :)

  • #41653
    Profile Photo
    Lori in PA
    Participant

    Thanks, Ellen. I understand the caution about using Botox. I was one of only 15 patients out of hundreds that my neurologist felt would benefit from Botox.

    My neurologist actually first brought it up a few months ago because he said he felt like I was becoming more resistant to any treatment, and that my many trips to the Emergency Room with static migraines were troubling. I’ve been hospitalized several times in the last several years, and I was taught to inject myself with Toradol at home in order to limit hospital visits.

    I’ve also had nerve blocks done in the past, which I think were more painful than the Botox injections. Those worked well for about a month, and my doctor told me at that time that my response to the nerve blocks was a good indication that Botox would work well for me.

    If anyone has questions about how it is done or how it felt, I can reassure them. I’m a weenie about pain, and if I can do it, anyone can.

  • #41654
    Profile Photo
    Lori in PA
    Participant

    So far, I’ve had one mild migraine that responded to treatment with Sumatriptan and one mild tension headache in two and a half weeks since the injections. They gave me a short round of prednisone to nip the headache quickly. This is MUCH better than my almost daily headaches that included vomiting, vertigo, etc.

    The last several days I’ve not needed any medications and have been feeling pretty good. I’m keeping my fingers crossed!

  • #41655
    Profile Photo
    Ellen
    Participant

    Lori in PA – this truly is wonderful news. I’m so glad! I’m gonna keep my fingers and toes crossed that this continues… Congratulations!

  • #41656
    Profile Photo
    Elaine Gross
    Participant

    I am so upset. Last Friday I was supposed to have Botox injections but there was a problem with the drug company supplying the Botox and it’s coverage from my insurance. I go to Jefferson Headache Center located in Jefferson Hospital in Philadelphia, Pennsylvania. There’s no problem with coverage with the doctor or getting the injections, just the Botox. The gal at Jefferson who handles the Botox patients has really been fighting this for me for two weeks and has gotten nowhere. She has rescheduled me again next Friday, meanwhile I’m calling my former employee’s health coverage coordinator (I’m retired) and find out what the problem is. I have a great plan, and pay a high co-pay each month for my coverage. I got injections in November with no problem. I don’t know if coverage has changed from last year, if it’s a different drug provider, my insurance provider’s the same, or maybe because those injections were given by my ENT, but I’m about at my wits end, and so is the gal’s at Jefferson. It is nice to know she is really working hard on this for me. It’s very hard to deal with this and with migraines, if it doesn’t cause a migraine it sure does make one worse!

    • #48259
      Profile Photo
      meh422
      Participant

      Elaine,

      Since my insurance will not cover Botox, I’ve been working with the manufacturer of Botox and their patient assistance program. If your insurance decides not to cover it, contact them and they are amazing about helping. I’m still in the process and have not been able to start getting the shots yet but they have really been helpful so far.

    • #48358
      Profile Photo
      Ellen
      Participant

      So true meh422,

      Thank you for reminding us. For those with insurance, you can get some $$ back from them too. Contact your doctor for a form when you get your injections.

      ~Ellen

  • #41657
    Profile Photo
    Diana-Lee
    Participant

    How frustrating! Especially considering the FDA has approved Botox for chronic migraine, I would think that shouldn’t be an issue.

    I had two rounds of Botox. I only got about a week of relief each time, but those two weeks were wonderful. Even though the injections do hurt, they weren’t anything those of us used to migraine pain can’t deal with!

  • #41658
    Profile Photo
    melissadwyer13
    Participant

    I had my first round three months ago, and my insurance will only approve it every six months.. the first round had no effect on me. But I’m going to give it another try in three months.. Did anyone have more success the second time? it IS uncomfortable and painful but compared to a migraine… it’s nothing. I’m so used to IV’s and needles. In one year I visited the ER 80 times I think they said, and was admitted MANY times.. so when I saw the needles they’d be using.. I was like oh, piece of cake.. but I guess I didn’t realize how sensitive the areas they were injecting are.. it’s so much more sensitive than an arm where and IV is inserted… I’m not sure my neuro wants to repeat it because he said since I had zero success it might not ever be successful… Usually I guess, if there’s some success that more rounds help. So, I’m moving to a last resort preventative MAO Inhibitor.. very unhappy about this, but if it helps it helps..

  • #41659
    Profile Photo
    Ellen
    Participant

    melissadwyer13,

    Is there any way you can appeal your insurance’s limitations? I know sometimes this works. Additionally, there is a plan through Allergan in which they can assist you if you can’t afford the procedure. I don’t know enough about Botox and Migraine myself – I’d love to learn more – but I do know that when used for other conditions such as Dystonia, it is necessary to continue the injections regularly in order to achieve maximum benefit. Like anything else, it takes time, and letting it wear off for several months and then starting over just isn’t practical. Does anyone know if this is true for Botox for Migraine?

  • #41660
    Profile Photo
    melissadwyer13
    Participant

    I guess he doesn’t want to do it now until we see if this new preventative works, because usually you will have SOMEWHAT of a relief if it’s going to work… and I had none. I’d be willing to try it again, but he is hoping we won’t have to!

  • #41661
    Profile Photo
    Jean
    Participant

    I am exactly 2 weeks out from my first Botox treatment – have had a terrible two weeks – had to get Toradol and Percocet. But no pain meds for two days!!!!Not headache free but not in bed or on medication!!! I am so hoping this will continue.

  • #41662
    Profile Photo
    Jean
    Participant

    Actual treatment was not bad – have had multiple injections for trigger points and a series of lumbar steroid injections for a ruptured disc – the Botox injections were nothing compared to those.

  • #41663
    Profile Photo
    Judi
    Participant

    I had Botox injections 3 weeks ago and I am in severe pain in my neck. I had 31 injections. Some in the forehead, scaple and the rest in my neck. When I woke on the 3rd morning I was unable to move my neck. It became excruciating. I had to call the doctor back and I am now wearing a collar. I was also given steroids to counteract the inflammation. I am very leery of going back for the next 2 sets. I hope this procedure works for everyone else.

  • #41664
    Profile Photo
    Ellen
    Participant

    Judi, Botox is used for another condition called Dystonia/torticollis. Unfortunately, sometimes a little too much is used in specific muscles that can render them weak or useless for a few weeks. This can cause trouble swallowing or holding your head up. Feedback on this is important for your doctor so the next time around he/she is more diligent in placement of the injections as well as the amount used. This doesn’t mean that your injections were a failed attempt, it just means that there is a bit more of a learning curve in your particular instance. It’s up to your doctor and you of course, but I don’t know that I would give up hope yet. I hate to see potentially helpful therapies discarded because of a single bad experience that can be learned from…

  • #41665
    Profile Photo
    Judi
    Participant

    Ellen I won’t give up. I just wasn’t expecting so much pain. I still have no relief from the migraine which the doctor told me its not uncommon. Thank you for the support.

  • #41666
    Profile Photo
    Migraines2
    Participant

    I have had migraines since I was a kid. About 5 or 6 years ago I started getting them more often, 4 a month, then 9 a month, then 11, usually lasting days at a time. Eventually it seemed I had a migraine every day. We tried all sorts of meds, but after 3 years without much success, my doctor decided it was time to try Botox. What a lifesaver! I noticed a change right away, although it did take a little over a week until I had the full effect. I have continued the injections every three months for the past two years and my migraines have continued to lessen in both intensity and frequency. Botox is not a cure, but it’s by far the best treatment I have had!

  • #41667
    Profile Photo
    Kym
    Participant

    I had my first Botox treatment yesterday. I’ve had migraines for the last 24 years and over the course of the last three years they have become near daily — my journal (I use iHeadache.com’s app) shows a migraine or other headache 36 of the last 43 days and that’s pretty darn typical of the last few years for me. I’ve tried countless preventative and abortive meds without success. Only narcotics help — and we all know the drawbacks to those. My biggest trigger is weather (heat, storm fronts, dramatic changes – I suffer from them all) so this is the worst time of year for me. I’ll revert to having mostly menstrual migraines in the fall and winter and will enjoy having only 5 or 6 migraines a month.

    So back to the Botox – yesterday was my first treatment and I’m hopeful that *this* will be the treatment that works. I don’t know how long it takes for side effects to appear but so far, I’m without any. As Murphy would have it, yesterday I had one of the worst migraines I’ve had in recent memory. I’m hopeful it will be my last for a very long time! Most days I awake with a headache of *some* kind that may or may not progress into a full blown migraine. Today, however, I’m 100% pain free – yea, me!

    With regard to the treatment – I concur with what other have said. It’s not that bad. It was uncomfortable, and it was uncomfortable 31 times, but it really wasn’t as bad as I expected. I was nervous about the injections on the side of the head as I had a brain tumor removed from deep within my temporal lobe and that side of my head has scars and I thought it would be sensitive. As it turns out, I must have diminished feeling from the surgery because the other side of my head was much more painful – ha! It was all quite bearable, however. I’ll report back as time goes on. If anyone has questions, feel free to ask!

    One last note – I’ve been on a daily preventative for the past 6 weeks (a new one) and he did leave me on it for now. He didn’t want to change anything in my treatment until after my second round of Botox. He stated that if I dont respond after 2 rounds, I’m not likely to respond … I’ve seen others post that they were told 3 treatments. I’m curious what those on this forum who’ve had the treatment were told?

  • #41668
    Profile Photo
    Jean
    Participant

    I am now 3 and half weeks out from my first botox – still have had several bad migraines and have missed several days of work. Last 4 days have been better – not headache free except for short periods of time through the day. Afraid another one might be coming on.

  • #41669
    Profile Photo
    Teri-Robert
    Participant

    Jean,

    How do your Migraines compare with before you had the Botox? Are they as frequent? As severe? Preventives, including Botox, seldom prevent all Migraines.

  • #41670
    Profile Photo
    Kym
    Participant

    I’m 5 fully completed days out from my first Botox treatment and I’m 100% migraine free. I haven’t gone longer than 2 days without a migraine since last year and can’t recall the last time I went 5 whole days. I haven’t had any side effects. I have had the pressure just above my eyes and some nausea that I typically feel at the beginning of a migraine and once or twice I *felt like* a migraine was coming on – but it never did. I’m really hopeful that the Botox, while expensive, is going to finally be the one that works for me!

  • #41671
    Profile Photo
    nichole18
    Participant

    Hi. My name is Nichole. I am 23 years old. I have had horrible full blown migraines every single day for the past year to point I cannot function. I’ve had an MRI, CT scan, Spinal Tap, to rule everything out. I just have migraines. I’ve been put on numerous medications, but nothing seems to work. My neurologist suggested Botox. It seems to be my only option. I can see it has worked for some of you on here. Did you have to stay on your daily medications? Do you still bad full blown migraines? Did you have any reactions after the Botox injections? Any input thats not already up here would be great. If I repeated any questions that were alreay asked, I apologize. Thank you so much in advance!

  • #41672
    Profile Photo
    Ellen
    Participant

    Nichole, hang in there, you are NOT at the end of your rope.

    My first suggestion is to get to a headache specialist. You are suffering way too much to not be on a preventive. True, it sounds like you have tried several, but it is nearly impossible to have tried everything. Additionally, if you are not seeing a headache specialist, it is very possible that the drugs you tried were not tested correctly – incorrect dosing, titration or even length of time for the trial. This is where a headache specialist really rocks because this is all they do, day in and day out. They really know the ins and outs of dealing with difficult to treat patients. It’s very possible that you have unnecessarily discarded a drug that may – either by itself or in combination with another – be helpful to you.

    A neurologist can do Botox injections, but he may not be your best shot at seeing a good outcome. Still, I hope that, should you decide to go this way, that you have immediate success. It’s about time you had some relief…

  • #41673
    Profile Photo
    Kym
    Participant

    Nichole:

    Here is my experience as it relates to your questions:

    Did you have to stay on your daily medications? Yes, my doc didn’t want to change anything we were currently doing. Although, I did come off of the daily a few weeks after my injections as I found them difficult to tolerate (this seems to be a recurring theme for me — either the daily med flat out doesn’t work or I can’t tolerate them).

    Do you still bad full blown migraines?
    I’ve only had my first set of injections and that was 29 days ago. I’ve had 10 migraines in that time. However, I was having near daily migraines so this is an improvement. I’ve also noticed the intensity has diminished. In addition, the sensitivities to light and sound and even upset stomach has diminished too. I’m hopeful that this is a solution that will continue to work for me.

    Did you have any reactions after the Botox injections? None what so ever — cept my forehead doesn’t move :) — but, that’s an expected result :)

    Feel free to LMK if you have more questions! Best of luck to you!

  • #41674
    Profile Photo
    toyzott
    Participant

    I had Botox injections 2 weeks ago. Three days after the injections, I got a migraine, which was much reduced in pain, that was the great part! I still had nausea, diahrea, aura, but was able to deal with those symptoms without the ice pick sensation every time I moved or blinked.

    That said, I am having some issues with some of the side effects now. My sinus’ feel like they are continually stuffy, my head feels heavy, and a general feeling of being run down and exhausted. I am still getting daily headaches, that seem to be centered behind the sinus area, but after living with headaches for 20+ years, thats just a part of life.

    On a good note, the tension headaches seem to be improved. So fingers crossed, maybe this round just got a little too much in my forehead area. Trying not to be too disappointed, had hoped this would be the “miracle cure”.. which I should realize by now doesn’t exist.

  • #41675
    Profile Photo
    picklestheyorkie
    Participant

    I posted this somewhere else as well…

    I am sorry to hear about your headaches…My wife had nerve decompression surgery with Dr. Guyuron in Ohio. Responding in ANY way to botox increases the likelihood you would benefit from the surgery. You cannot have children if you are on botox, so we needed to stop it when we wanted to try for a baby. I would highly recommend Dr. G for patients who have lost all hope, especially if botox worked (even minimally). He has given my wife her life back after 20 years of debilitating migraines. Insurance even covered the procedure for us. Even if it hadn’t, I would have paid for it. If you want to see the details, look up our story at the link below (I’m Gregory Miles on there)…there are details about our experiences and answers to many questions you might have. My wife, having seen the benefits (and having spoke with or met over 50 other success stories, wants to help as many people as possible.

    http://www.facebook.com/pages/Migraine-Surgery/341662241189?v=wall#!/pages/Migraine-Surgery/341662241189?v=wall

  • #41676
    Profile Photo
    fredaspitzelburger
    Participant

    Hi-did the Botox injections 3 days ago, and so far I am pleased. Normally with the severe weather here, I am down for the count and bedridden, you know the drill. We have had storm after storm, and no migraine. My forehead is pretty smoooooth, you could probably bounce a quarter off it, but in my mind if I even got 50 per cent relief out of it, it was worth it.
    It took 4 months of insurance battle to get it. Tricare (military) made it impossible with their endless letters always the same form letter, we need more information, would get on the phone, never got anywhere. I think they were responsible for the majority of headaches I had in the last four months. My husband even went in their office to find them painting their nails. Thanks for your service.. right?
    I sent an entire year, with my running logs, period logs, food logs, migraine logs, and a letter as to the impact on my family-like not being able to drive my kids to school. Neatly typed up, with a cover and an introduction, this was finally approved, with our civilian medical insurance, NOT let’s drive you crazy Tricare, as I sat listening to a swing band in NYC playing, “I’ve Got You Under My Skin.” I was elated, and couldn’t have found a better song for it.
    No aura today, no nausea, no weirdness, and the barometer is going crazy.
    DON’T GIVE UP. All the best,
    Freda

  • #41677
    Profile Photo
    larissataurins
    Participant

    My headache specialist recommended Botox to me as a treatment for my chronic migraine. I am considering trying it, but worried about long-term side effects. There must be some effects on the body that either may not be known yet or build over time. Does anyone have any information about research that has been done, or any experience with long-term adverse reactions?
    thanks, Larissa

  • #41678
    Profile Photo
    Ellen
    Participant

    One of the potential long term effects includes developing an immunity to the toxin. There are multiple toxins that may work for chronic Migraine, however onabotulinumtoxinA is the only one likely to be approved for Migraine treatment until when and if immunity becomes a large scale problem, which is likely to take some time to occur.

  • #41679
    Profile Photo
    ryandeshler
    Participant

    I had Botox 2 weeks ago. So far I am happy. I had almost 30 days of straight migraines. Since the Botox has taken effect (about 3 days after treatment) I have had a significant decrease in the severity and quantity (I don’t feel like its a placebo effect). Typically my neck and shoulders hurt a lot and I have noticed that pain diminished. Only time will tell how much it really is helping. I also now take concurrently Imitrex injections which has been a blessing during bad attacks.

  • #41680

    Just wanted to add my experience for anyone considering. At first I wrote if off because i HATE needles (get all worked up, cry, uncontrollable, etc.) and when headache dr. said “typically 31″ injections i almost fell off my chair. i thought about if for a few weeks, and decided to get more info from the doctor. he said with my past E.R. visits alone, the insurance company would likely cover most of it. So i decided to do it. I told him to prescribe me something, knowming my needle-phobia. He went with 4 ativan 30-40 prior to procedure. I had a driver. I felt i was aware, but the ativan had me in a fog where i thought i was aware, but later couldn’t remember something, etc. I didn’t watch where he did the injections, but only felt pain a few times (like someone taking a sewing needle and shoving in my lower head) but made it through. Had to be careful on that ativan, i was stumbling over my flip flops and my driver had to help me to the door. I slept a solid 5 hours. Will report on any changes. No swelling nor irritation. just one tiny bruise mark on my forehead. (My h-ache profile is around once a month (sometimes 2) very severe and currently cambia and migranal did not work for the last one.Botox is to try to prevent.) Hope this helps someone with “what to expect” :)

  • #41681
    Profile Photo
    ryandeshler
    Participant

    I am a little over three weeks in. I still have migraines every other day. I do notice some diminishing pain in areas (Forehead and neck), but it still breaks through the Botox. I am using injections for those.

  • #41682
    Profile Photo
    Ellen
    Participant

    ryandeshler – Congratulations on achieving at least some minor level of success. It may take several injections before you see maximum results. Additionally, I would want to add that changing the pattern may be helpful later too.

  • #41683
    Profile Photo
    Lori in PA
    Participant

    Hi everyone! It’s been 18 months now since I first started with Botox. I’m still getting the injections every 3 months and it is still working well. A bad month might be 3 or 4 mild migraines that respond quickly to Sumatriptan. A good month will be no headaches at all.

    I’m thrilled that even when I do get a migraine now, it isn’t nearly as bad. It’s still one-sided and I still get the aura, but the pain is much less severe and I don’t get the weird scent cues (I used to smell bananas all the time).

    For me, Botox has changed things dramatically for the better. I can’t imagine my life without it at this point.

    The only time I had an upswing in migraines since the Botox was when I was using the artificial sweetener Splenda. I switched to Stevia and that made a big difference.

  • #41684
    Profile Photo
    Ellen
    Participant

    Lori in PA – Congratulations! It sounds like this is really having great results for you. I’m just a teensy bit jealous. Do us a favor and check in from time to time and let us know how everything is going.

    Good luck for a much brighter future!

  • #41685
    Profile Photo
    mickey0063
    Participant

    My migraines started out of no where when I was 20;I went through all sorts of testing, nothing was wrong. I pretty much had way more than 15 migraines a month. Head pulsating vision blurred and very tired. Now I just get a dull pain every once in a while. I can tell when I have a migraine coming and I take an alieve and it usually does the job. I started botox 11 months ago, in conjunction of botox I was on nortriptyline they worked very well. Three months ago I was taken off of nortriptyline and going back in 2 weeks for my 4th botox injection. I have to say botox has helped me tremendously! I have a friend who has migraines and she takes imitrex and that seems to work for her otherwise I am usually all for botox.

  • #41686
    Profile Photo
    aim1
    Participant

    Second treatment with Botox and no improvement. Toradol and muscle relaxers only do so much. Daily migraines from bad to worse. Ears hurt so bad I feel like I’m going deaf . If Vicodin and butabitol cause rebound what else is there. Try every ssri drug known to man. Along with other dopamine drug ect. Think I tried everything even injections at local pain clinic into nerves. All web site talk about exercise. How am I suppose to exercise when I had migraines everyday. Drs don’t understand I have to work every day. By myself. I just can’t leave the store I manage . To go to clinic to have an infusion done 3 or 4 times a week . At my last resort before I move on to pot which is illegal here still. If it was used for treatment before 1964. , why can’t they extrac that from plant and use for migraines . Oh wait that wHy cheaper and drug comp can’t make profit on stuff I could grow in my back yard. Sry about rant. . But sick of migraines and no one knowing how to treat me. Did I mention it runs on both sides of family . So twice the messed up gene pull. 42 yrs now had since I wAs 12 yrs. quality of life is crap.cant take tripans because of throat swelling . And the micardis med cause insomnia . Just gonna wait for stroke one day since their 400% more likely in migrainee. Just keeps getting better.

  • #41687
    Profile Photo
    Ellen
    Participant

    aim1 – Botox often takes multiple rounds of injections to be effective. Especially if you have been chronic for some time.

    Here is a list of the latest list of recommended preventives. https://migraine.com/blog/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/ Have you tried them all yet? There are literally hundreds of options out there. The trick is finding a doctor who knows what they’re doing and can keep trying things until something works. You do NOT have to live your life waiting for a stroke :(

  • #41688
    Profile Photo
    jbinsley77
    Participant

    I am on my 4th round of botox now. the 1st one was a life safer except for I had problems with my right shoulder. not pain but weakness – that lead to injury. but we just worked on my dosing and it has been up and down from there. rounds 1 and 2 were learning experiences for both me and my dr. the botox wore off after about 2 months and I have to get nerve blocks to make it through. round 3 was better. I lasted until the 3 month mark or almost and we have my dose right but medication changes on my prevenatives due to another health issue care causing me to have daily migraines again. not bad but enough for me to take notice. and with the weather changing here all the time going into fall it’s not to pleasant. and oh course FMLA is jerking me around right now too. so I have to wait for them to make a decision before I can go an see the dr or I could lose my job.

  • #41689

    Wow…today was a wth day! I had the treatment with Lidocaine in May, then Botox in August and this morning it was like all 31 shots stopped at once! Is that normally how it goes? I go Wed for more shots and take mexelitine 4 times a day…was curious if that is how botox just stops! Thanks

  • #41690
    Profile Photo
    Ellen
    Participant

    kathy-phelan-delaurodelauro – I am not a Botox patient, although I sure wish I was. From the discussions at AHS conference and in online communities and with friends, I don’t think that is a typical reaction. I am wondering if you might have overdone the triggers in the last 3 days or so that might have made it more likely for a breakthrough Migraine despite your treatments?

  • #41691
    Profile Photo
    shirawild
    Participant

    I had botox shots a month ago and have only 1 unbearable migraine since. And that was with in the 1st week I got the injections. It is a godsend for me. I had been having migraines daily in spite of being on depakote and neuronton and many other drugs for 8 years. I had used many recuse drugs but usually ened up in the ER for Toridol, benedryl and anti nausis meds IV twice a week.Being that my fear of needles ended having to get so many iv’s and shots in the ER or dr.s office, the needle was not an issue for me. It stings,for a second. The first week after the botox I still had migraines, but only 1 that was not managable, even with a trip to the er with my regular IV “cocktail”. Other then waking up with a minor headache that went away on it’s on I have had no migraines. (knock on wood!!) I have my life back!!!! They have lowered the dosage on depakote and hope to get off all that stuff that didn’t seem to work anyway. Sometimes I can feel the area where the botox is tighten up, tingle, but thats it. THANK YOU BOTOX!!!!

  • #41692
    Profile Photo
    Nancy Bonk
    Moderator

    Good for you! I have a member in my support group who has had great success with Botox. She still has to be very careful about her triggers, but Botox has really helped her too.

  • #41693
    Profile Photo
    mrst53
    Participant

    I have had migraines for 47 yrs. I have had so many tests and blood tests, I should light up at nite from the radiation. I finally found relief with accupuncture so that they were down to 2-3 a week, rather than everyday. I have tried every med known to man and tried the herbs 1st. I take lots of pills to prevent hemi-plegic migraines and some to try to prevent regular migraines. Then in 2001 I was hit by a car going 55. He hit me just behind my door. I know have vetabrae lying on nerves that can’t be operated on. I finally found a doc that would give me”radio wave injections” These are like nerve blocks, they just use radio waves- no side effects unless you are allergic to the pain med they give you to dull the needle pain. Then

  • #41694
    Profile Photo
    mrst53
    Participant

    Sorry, fingers to big… the side effect was a horrific headache described as a hangover headache. I don’t drink..so I don’t know. Has anyone ever tried those. They work great.. no migraines for 3-9 months. Now I live in a different area and have to convince this new neuro doc that I want this type of injection before the Botox.
    Freda, How did you ever get Tricare to pay? I have my medical records for Walter Reed to prove how far back my migraines go, do you think that would help?
    Does Medicare pay for Botox?
    I don’t know alot about the Botox, but am willing to learn.

  • #41695
    Profile Photo
    Nancy Bonk
    Moderator

    Hi MrsSt53,

    I haven’t had the blocks you describe but have had trigger point injections that only helped marginally. Typically if a patient gets relief from nerve blocks, they may be a good candidate for Botox. Getting insurance to pay is still tricky from what we are seeing. Some insurance companies pay without any problems, other don’t pay at all and then there are those who make you jump through hoops to get Botox covered. Let me give you some information on Botox so you can learn all about it; https://migraine.com/blog/botox-approval-for-chronic-migraine-what-does-this-mean/ and https://migraine.com/blog/botox-approved-for-chronic-migraine/

  • #41696
    Profile Photo
    Ellen
    Participant

    mrst53 – It sounds like you may have had radiofrequency ablation? This is where probes are inserted next to the nerve, then radio waves damage/kill the nerve to interrupt pain signals. It is also called a neurotomy. This is a temporary fix as the nerves do eventually grow and become functional again. Results from this procedure are very mixed in my experience as an advocate. Please be aware that there are side effects to everything we try for our Migraines. Side effects from RFA can be quite severe, or relatively nil. You just never know until you’ve had the procedure done. Responding well to typical nerve blocks is a good indication that RFA may be a useful option.

    I know Medicare does sometimes pay for Botox for chronic Migraine, as I am aware of patients on Medicare using Botox treatments for their chronic Migraines.

  • #41697
    Profile Photo
    mare
    Participant

    Was one of the first case studies to have the docs try Botox on about 15 or 20 years ago and it was a godsend!!! It stopped the migraines in their tracks. Would highly recommend it, but do your research and find a doctor who SPECIALIZES in it not just some hack who does it on the side or some plastic surgeon wanna be who like to think they can do it. Do your research! This is your health! and Botox is a deadly poison so you want to find the right doctor. But when you do, it is well worth it. Would do it all over again. In fact am trying to get my insurance to pay for it for migraine treatment. If they don’t I will pay it out of pocket because it works that well just to get away from the excruciating pain.

  • #41698
    Profile Photo
    Ellen
    Participant

    mare – you bring up an important topic: Migraine and headache specialists. I highly recommend that those receiving Botox for Migraine get it from a board certified Migraine and headache specialist who has received training in nerve block and Botox injections. You can find a list of specialists here: https://migraine.com/blog/looking-for-a-migraine-specialist/ Asking them how many patients they have injected is also helpful. There are also 3 different injection techniques/patterns, so ask which is being used on you during the injection process. If it doesn’t work, it’s possible another technique/pattern may be more helpful.

  • #41699
    Profile Photo
    melaniemonroe
    Participant

    I go this Thursday for my first botox treatment. I cannot wait! I have 2 heart stents and cannot take triptans, only preventatives. Have had terrible headaches for 30+ yrs. I dont care how much pain they cause, if they will just work! But I’m so happy to have all of your input on the treatment. Thanks!

  • #41700
    Profile Photo
    Ellen
    Participant

    melaniemonroe – I’m with you! I have an appointment scheduled for the first part of January, and my fingers are crossed. Now that I know you’re going in too… they’re crossed for us both!

  • #41701
    Profile Photo
    shellysk8
    Participant

    I was just approved for Botox for my migraines. I have suffered with them for 30+ years and tried many preventive drugs and rescue meds. My current regimen had worked well and now is no longer effective. The neurologist/migraine specialist suggested this alternative as I suffer from a near-daily migraine and the rescue med combo is not so effective anymore either. I only wish it was not so expensive, as I have a high deductible plan, and the entire first round and most of the second will be out of pocket for me. I sure hate to think that I will be one of those that this doesn’t work for. I am going to trust her expertise and hope for the best at this point! It seems that the botox does work for the majority of her patients (she cites 90-95%) that she recommends it for.

  • #41702
    Profile Photo
    Nancy Bonk
    Moderator

    Hi,

    Good to hear you were approved for Botox. I’ll be keeping my fingers crossed for you. Teri just had her first series of shots and we are hoping for good results for her too.
    Will you keep us posted on how you are feeling?

  • #41703
    Profile Photo
    sharonfalk
    Participant

    I had Botox 8 days ago. I have migraines pretty much every day (only two days in the past month that were less than a five) and I’ve tried a lot of preventative meds with no luck. My migraine specialist said it was time to try Botox and, though I was very hesitant, I gave it a try. The shots were like an intense stinging feeling, but certainly tolerable.

    Two days ago, I had a prodrome (mine are typically intense creativity and avoidance of light and noise), but I didn’t develop the disabling headache. Today, I’ve got a nasty one brewing that I had to treat.

    I gotta tell you, I know this isn’t my last hope, but I’m certainly feeling like I’m getting to the end of my ability to deal with this. I have a 5-year-old that is definitely missing out on a lot of things because I’m so often stuck at home while his friends are hitting the playground. So, I’m hoping that the prodrome with no migraine is an indication that this is working.

  • #41704
    Profile Photo
    Ellen
    Participant

    sharonfalk – The good news here is that you only had your Botox injections 8 days ago. It usually takes 2-3 weeks for them to even begin to show signs that they may be helping, so my guess is that the best for you is yet to come :)

    One more thing: Botox tends to take multiple injections to work optimally. In other words, the effects of the injections are cumulative for about the first 3 injection cycles.

    What does this mean for you? Don’t give up if this cycle doesn’t do everything you’d hoped it might. Hang in there and have patience that with time, the effects will optimize to a point that you are feeling better and getting at least part of your life back.

    The bad part? Patients sometimes expect the injections to be a magical treatment that eliminates their Migraines from their lives. Hopefully your doctor explained to you that this is not a realistic expectation. Most doctors consider a treatment a success if your severity and/or frequency is cut in half.

    Have you had a frank discussion with your doctor re: his/her expectations for this treatment and your expectations? Here is an article that might be helpful: Do you and your specialist disagree on the severity of your Migraine Disease? https://migraine.com/blog/do-you-and-your-specialist-disagree-on-the-severity-of-your-migraine-disease/

  • #41705
    Profile Photo
    shellysk8
    Participant

    Well, I had my shots Monday. In themselves they weren’t SO bad, but the MD said I should be able to work afterwards and I literally was unable to concentrate well enough to do anything all day and spent the day in bed. I am seeing a bit of relief already, as two headaches that I believe should have been full blow migraines ended up to be only “bad headaches”. However, I have a great deal of muscle ache and soreness in my neck and shoulders right now. I am guessing that is normal since there must be some compensation from the muscles that are not functional due to the shots?

  • #41706
    Profile Photo
    Ellen
    Participant

    Hi shellysk8 – It takes Botox usually about 2-3 weeks or so to begin to work. Occasionally we’ll see a patient that begins to see some effects in 10 days to 2 weeks, but honestly I don’t think you’re probably seeing any affects other than directly linked to simply having injections in tender places. What has your doctor told you at this point?

    Eventually, when they begin to take effect (and it takes about 3 weeks to see full effect from that injection cycle) you may see some changes in how your muscles seem to be working, however that is not the primary end point for Botox for Migraine. Most people who do eventually have painful side effects from Botox usually are those who have very weak muscles around their neck and shoulders before the injections. The other muscles begin to overwork as a result of compensation for those that may not be working as well due to Botox, and they can get tired and sore. Although it’s definitely not impossible, I would be super surprised if this is already happening in your case. I hope you’ll keep letting us know how you’re feeling, in case you’re one of those that reacts very quickly to the injections. It’s great for other patients to see other experiences so they can get a better idea what the process can be like. :)

    I too just had my first round of Botox on Monday, and am not really seeing anything yet at this point. I do admit that initially after the injections I felt a cooling sensation because the solution used was chilled, but other than that and a very slight bruised feeling, that was it. I’ll be keeping a diary and hope to post it on the Migraine.com blog though, so others might get a good idea what a typical experience is like :)

  • #41707
    Profile Photo
    tinallee
    Participant

    Ellen,
    I enjoyed your first post (and I loved your headache specialist’s office). Since I will be having Botox injections soon, but have not been told what to expect I am hanging on to the edge of my seat waiting to read the next installment.

    I will admit to being very nervous and a bit aggravated. I had to call my insurance company to ask which specialty pharmacy the doc could order the Botox from and then when they ordered it the Pharmacy called me to say they were turned down by my pharmacy benefits because it is not on the formulary even though we went through the process of getting it approved. We think we have that kink worked out. The fun part of that was that I was at work with a migraine dealing with pain, nausea, difficulty concentrating, mood-swings and blurred vision trying to make sense of it all. Fun and games it was not. Anyway, the day my doctor and I finally agreed to go the Botox route I was in a great deal of pain and forgot to ask what to expect so I am in the dark. From everything I have read I am a bit nervous. But, since my insureance will not approve Cymbalta which actually works I am reluctantly willing to try this option. I hope it is working quite well for you and I look forward to reading the next installment.

  • #41708
    Profile Photo
    Ellen
    Participant

    TINALEE – Here is the link to the injections installment: http://migraine.com/blog/the-injections-chronic-migraine-and-botox-diary/ I hope it takes away some of the tendency to be frightened or nervous because of something unfamiliar.

  • #41709
    Profile Photo
    tinallee
    Participant

    Thanks! I am not afraid of needles, but I have read all of the potential side effects which are enough to turn anyone away. I plan to stick to it anyhow. :-) I do look forward to hearing how it works for you.

  • #41710
    Profile Photo
    chrwebb
    Participant

    I had my first round of botox (100 units) last October for chronic tension-type headache (from a headache specialist). I’m posting because my headaches have become very much worse since I got botox, and I’m wondering if anyone on this forum has had a similar experience (although I realize that the experience of someone who has migraine may not really be applicable to mine). I’m especially hoping to hear that the worsening wasn’t permanent, which is what I am starting to fear for myself.

    The first 10 days or so after botox, I had a very sore neck but little headache. My headaches ramped up pretty quickly after that and are now virtually constant. They are also more intense than they were before. I was told that the botox effects would wear off after 3 months, but if this increase in headache is due to botox (if it wasn’t, I think it would be a heck of a coincidence), it shows no signs of easing up. Needless to say, I am feeling pretty anxious and upset.

  • #41711
    Profile Photo
    Ellen
    Participant

    chrwebb – I am wondering if you have seen a *board certified* headache specialist. 100 units isn’t the protocol amount for Migraine. Also, Botox was not found to be effective for tension type headache. So, I am a bit confused myself as to what kind of treatment you really got and why.

    Botox can cause muscle weakness that results in strain of other muscles as they try to make up for the lost activity of the injected places. One of the more common side effect symptoms after Botox is headache and muscle soreness, and this is usually the reason why. Whether it goes away when the Botox wears off is going to be individualized. Theoretically, if the muscles regain their function, this would lessen the strain on the other muscles, hopefully lessening triggers and problems. However, if you are in any way musculoskeletally unbalanced as a result of this experience, it can take quite a bit of time for the body to rebalance itself, and there can sometimes be other issues at play here.

    What is your doctor saying about these issues??

    Here is the first post to my Botox diary series. In it I will be addressing some of these issues: https://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/

  • #41712
    Profile Photo
    chrwebb
    Participant

    Thanks for your reply, Ellen. Not sure what you mean by “board certified” (btw, I’m in Canada), but this neurologist is well known in my province as the only neurologist who specializes in headache and migraine. He seems to have a good reputation.

    I did some research beforehand and so I knew that botox wasn’t found to be effective for chronic TTH, but the doctor urged me to try it anyway, so I did (with some misgivings). Looking back now, I’m pretty glad he only gave me 100 units. I didn’t count the number of injections, but I got them in my browline, hairline, temples, occipitals, shoulders, etc. My understanding was that it was a standard pattern.

    The really acute neck pain only lasted for 2 or 3 weeks, and when I called the doctor’s office I was told the same thing you said, about other muscles getting strained trying to make up for the injected ones. What you are saying about an ongoing issue and rebalancing makes total sense. Can you let me know what other issues you were thinking of?

    My doctor’s office wanted me to come back for another round of botox, even after I told the receptionist how much worse my headaches were, but I decided against it. I still haven’t spoken with the doctor himself, but I am thinking about writing a letter to his office.

  • #41714
    Profile Photo
    Ellen
    Participant

    chrwebb – The frame of the body must be balanced, because well, gravity works. You might think of the stress on the accessory other muscles as a type of strain injury. This can do all kinds of things including subluxating the spine, creating inflammation etc. all which can lead to further tension. This all takes time to heal. Posture is really vital, and there are a lot of ways to try to overcome problems in that way.

    The facts of the matter are: It takes 155 units of Botox in 31 injection points for Migraine. IF your doctor thought you were Migraining, 100 units isn’t typically appropriate unless there were other exacerbating factors etc. Tension type headache was not shown to react favorably to onabotulinumtoxinA, and neither was episodic Migraine. While normally a trial of Botox is at least 3 cycles, I’d personally be asking my doctor a lot of questions about this type of treatment for your chronic TTH.

  • #41715
    Profile Photo
    valeriefago
    Participant

    I’ve been on Botox for over a year now. It was helping wonderfully until October rolled around. Today marks 11 days…the longest stretch between ER visits since I was admitted in Oct. My migraines have always been significantly worse in the colder months. Any thoughts on this??

    Since starting Botox, I had yet to go to work on the day of injections because I react differently every time. Well, I got my shots yesterday and went to work. Bad, bad mistake! I work in a state prison as sergeant. It’s loud, bright, stressful and busy all shift long. Uniform policy dictates that we must wear hats when outside. I wore my beanie in due to the cold but that barely there pressure around my head created such a vicious migraine that I ended up vomiting. I felt extremely weak and exhausted and got so amped up over the pain that I couldn’t stand any part of my uniform. I felt like my belt was cinching me to death, my tie was choking me. Note to self…don’t ever go to work after a treatment! I realize that doesn’t hold true for everyone though. My neurologist suggested that we try a referral to John Hopkins Headache Clinic since this winter has been so rough. That’s the next step. I firmly believe that the Botox helps and I’d be afaid to see what I’m like off of it (plus the no wrinkles in the forehead is a bonus). For those of you hesitant about trying it, do your research. If you choose to try it, keep an ice pack handy for post treatment. I hope you all have a beautiful, headache free day! God Bless!

  • #41716
    Profile Photo
    Ellen
    Participant

    Thanks for sharing your experience valeriefago. This is how we all learn and it is greatly appreciated.

    Normally I think Botox injections wear off slowly, however I have spoken with one other person who seemed to have a fairly abrupt return of her Migraines as well, so I guess it will be different for each person.

  • #41717
    Profile Photo
    cindimoyer
    Participant

    It’s been a week and a few days since my first botox treatment. I’ve been here long enough that I know I have a good neurologist and she used the right amount of meds in the appropriate places!! Thanks moderators! So now I’ve had two migranes since then with all the normal symptoms but without any head pain. I know to give it more time but wanted to put this out there in case others do the same thing. God bless us all as we deal with these monsters in our brains.

  • #41718
    Profile Photo
    reginavillalobos
    Participant

    On December 5, 2012, I received 31 Botox injections for my severe migraines. On average I have 22 severe migraines a month. I’ve dealt with severe migraines for over 38 years, I’m currently 43 years old and also have several autoimmune diseases with Lupus being my most severe one. The migraines are so severe that I’ve been put on disability because of them.

    For 3 weeks after the Botox injections I had severe residual pain from the injections site. The main pain was in the nape of my neck, shoulders and back of my head. I also suffer from Neuropathy, so I was chalking the pain up to my nerve disease.

    My neurologist did warn me that the Botox may take 6-9 weeks to fully work, so I was willing to give it time to work.

    I have used up my entire prescription of Norco due to the migraine pain, have used up my weekly supple of Amerge as well. I’m not finding any relief from the Botox injections as well.

    I have found that when I have lupus flares that my migraines become more intense; hence the inflammation.

    Last week Friday, I can honestly say I had the worst migraine of my life. I actually wished for everything to just end. I felt like I had been hit in the frontal lobe by a ton of bricks. Normally my migraines start on one temple or the other and have an aura affect. This one hit completely out of no where and it was completely blind siding. I was incredibly sick beyond belief for the entire weekend.

    Today, the migraine is a bit better; as I can finally function and I’m coming back from the confused state.

    I can honestly say that I will not be getting any further Botox injections as it didn’t relieve me from the frequency of how many migraines I’m getting per month. I was willing to try this as I have been on most medications that my insurance would cover. I feel like I’m at the end of my rope and at the point of no return. I don’t no where to go from here.

    I have two small children that I drive to school, when I can function and I need to get better for them, my husband and for my future!

  • #41719
    Profile Photo
    maryanni
    Participant

    Hello all. I have had chronic migraines for years and feel (like I’m sure all of you do) that I’ve tried everything. The last year my migraines have been much worse, up to 15-20 per month, and sometimes I’m fearful that I won’t be able to to keep working. I saw my neurologist on Friday 2/22 and she has submitted the request to my insurance company for Botox, so I’m hopeful that this will help. I know that it’s not a miracle or a cure-all for everyone, but I can’t wait to see if it helps.

  • #41720
    Profile Photo
    Ellen
    Participant

    reginavillalobos – I would encourage you to give the Botox the full 3 cycle trial period before giving up on them. Many people do not start to respond to the injections until they have had 3 cycles. The affects tend to be cumulative, so doing all 3 cycles may be important so that you don’t accidentally discard a potentially helpful treatment.

    Are you seeing a Migraine and headache specialist hon? http://migraine.com/blog/looking-for-a-migraine-specialist/

    There is still much hope for you! There are so many preventive treatments and medicines out there that it would literally take over 25 years to give them all a proper trial. All this trialing treatments takes an enormous amount of patience and gumption though. Being chronically in pain or sick is not for the weak, that’s for sure! Hang in there… there is hope for all of us!

  • #41721
    Profile Photo
    Nikcope
    Member

    I had Botox injections for the first time 2 days ago. I haven’t really heard anyone talk about the physical side effects. My muscles are starting to feel constrained and its very strange and unusual to experience, and I know it will get worse until the 2 week mark. I am a a registered Massage Therapist so I understand what muscles are needed for each function, but since Botox for migraines was not common protocol when I was in school I was not taught contraindications or specific treatment for patients with this therapy. I myself would like to continue the massages I get monthly, can I still get massage therapy on the muscles where the Botox was injected? what information can I rely to my therapist?
    Also how will the Botox affect my ability to lift weights at the gym, do I have to be more careful with overhead weights?

  • #41722
    Profile Photo
    Ellen
    Participant

    Nikcope – You ask some really good questions!

    First, in case you haven’t seen it, here is the link to my Botox diary where I do talk about physical side effects of the injections I had. http://migraine.com/blog/week-two-chronic-migraine-and-botox-diary/

    In our workshop, we didn’t really discuss massage and Botox per-se, so that would be an excellent Ask the Expert question: http://migraine.com/ask-the-experts/ I do know that we don’t really want to spread the toxin to other areas, so am not sure how long a patient would want to wait before getting anything more than light massage in those areas, or if there even is a wait time that would be suggested.

    As to your ability to lift weights, you may find that things change fairly quickly. You will want to take it easy I think, at least until you get used to how your body mechanics have changed after the toxin takes effect. As an ex-personal trainer, with my own personal experience, I think I would have encouraged patients going through this process to be sure they have a spotter at all times, and spend the first 2-3 weeks concentrating on maintenance instead of increasing the amount you are lifting. This will probably apply any time you use your upper body, not just on overhead lifts. I’m not sure I would even suggest increasing reps at this point, because you don’t want to suffer serious muscle fatigue in the muscles that are taking over for those that are less able to do their jobs. They’re likely already getting a workout throughout the day just by taking over for the other muscles. That is typically what causes increased headache pain in patients who have this as a side-effect. We want to minimize those side effects so you can get better, not worse.

    All that said, your body is an amazing thing, and it will re-balance itself and more strength will be built in the muscles that need it as they take over for those that are less able to work hard. This takes time. Be gentle on yourself for a while. I’ve no doubt you’ll eventually be able to get back in there and work out hard, I would just encourage you to take it very slowly. Athletes and those who like to work out tend to take things too fast, and therapists tell us we are the ones they have to keep telling “Slow down, take it easy.” By talking to your therapist, hopefully they can help you find a happy place where you are exercising, but not overdoing, while still staying safe.

  • #41723
    Profile Photo
    jo17151
    Participant

    Nikcope, I think that massage for those of us getting Botox for migraines is fairly new territory.

    My neurologist told me to wait 10 days before any massage or physio at or near the injection sites. Please let us know what you find out.

    I find that I have a lot of muscle fatigue due to other muscles being over worked. I also discovered some other underlying issues that just came to the surface when the Botox kicked in. Fortunately, I have an amazing physiotherapist who has worked wonders.

    Other physical side effects that I experienced were nausea, feeling off balance, a congested feeling in my head (my ears would feel plugged and would ‘pop’ with a yawn), and some tightness with my jaw and difficulty swallowing food that wasn’t well chewed. The nausea was not like a stomach type of nausea you’d feel after eating something that didn’t agree with you – but like my head was spinning. The swallowing wasn’t as bad as it sounds – it would just mean that I was forced to practice mindfulness while eating (no more grabbing something on the run or eating in a hurry). The side effects mentioned in this paragraph started in about week #2 and began to fade in week #4.

    I have learned that if I start to fatigue, I have to rest. This is a case where pushing doesn’t help – it just makes things worse.

    I had my 3rd set of injections in early January and will be going for #4 at the end of March. I’ve found the unwanted side effects lessen with each series of injections and the benefits have been increasing. In February I only had 3 migraine days (compared to 20ish pre-Botox)so, for me, it’s well worth it.

    I had very bad reactions to other preventative treatments – so this batch of side effects is actually not has bad as what I’ve previously experienced.

  • #41724
    Profile Photo
    Ellen
    Participant

    Thank you so much jo17151 for your input and experience! That was a fabulous answer!

  • #41725
    Profile Photo
    taralane
    Participant

    Hi all -
    I had my first set of Botox injections last week. Within 3 hours I had a #9 migraine that lasted for 96 hours. I had a morning without pain, but it came back in the afternoon. I managed to get rid of most of it but had trouble getting to sleep. Another migraine – level #8 woke me up in the middle of the night, and I had to take more medication. I was in bed again all day today. I had ice on all day, and now, although my neck muscles are stiff, the headache has slipped back to a #2-3 level where I can handle it.

    I e-mailed the neuro I am seeing (new one) and his only reply was that “we will have to see how this goes along with continuing treatments.” Has anyone else had this experience with Botox? I know it takes more than one series to get any effect, but I am not sure I want to go through this every time I get a series of shots, and I am not reassured by this neuro’s comments to me, which seemed a bit glib, and certainly unconcerned that 96 hours of pain that I could not get rid of should be noted.

    Anyone who has some experience like this or who can send me to a site with some more information on side effects would be helpful. I no longer trust any doctor to give me correct information about what might happen, and my body is so sensitive to meds after 44 yrs. and trying 72 different meds in various combinations, that I am not going to go in for another tx without some other information at my disposal.

    I feel really dumb that I was not armed with this before I took the first set!

    Thanks, and I am glad that this tx worked for some of you. Right now I am feeling very misled about what I could expect.

  • #41726
    Profile Photo
    Ellen
    Participant

    hangingbyathread – I’m so sorry you’ve experienced this. I always really hope that patients who try this or any therapy have good responses right from the start, but it just doesn’t work that way sometimes.

    Most people typically don’t have that kind of side effect right away, but it could be that the placement of the injections acted as a trigger for you. They are placed very near nerves that can be exacerbated. Have you ever had nerve blocks done to see if those nerves might be of particular trouble for you?

    Thankfully, there is a very good chance that this is an isolated incident. If you are able to get any kind of improvement the first round, it will hopefully be easier the second, and even easier the third. There are no guarantees as you know though. The good thing is that you now know how your particular body *may* react and can plan accordingly.

    Planning is really key I think in starting any type of new treatment. You should have an emergency plan in place in case a treatment triggers a Migraine or you have other issues. Clearly your Neuro hasn’t discussed this with you, which is sad, as you should not have to endure this without at least some basic support.

    I know we’ve talked about this before, but I’m sorry I don’t remember – are you seeing a Migraine specialist or just a neuro? I highly encourage you to get to a specialist who is much more likely to know how to treat you and have a much better attitude about it.

    All that said, I have heard of a few isolated patients who have had similar experiences to yours. As I said, it certainly doesn’t seem to be typical, but almost anything can happen with a treatment as you probably can surmise. The problem with these patients, is that not one that I know of has gone through the entire 3 cycles due to their first bad experience. This is unfortunate, because Botox injections have effects that tend to build upon each successive cycle of treatments. Even if you have a rough week or two at the beginning of each treatment, if they result in some improvement, you may find that it is worth it to have that plan in place and go for the treatments even if you have that initial bad reaction. Everybody is different, but I would be willing to suffer through a bad week for 3 good months… if that was the case. Each of us has to make up our own minds about treatment though. You are the one that, in the end, has to walk away and live with whatever good or bad occurs as a result. Our doctors don’t.

  • #41727
    Profile Photo
    tinallee
    Participant

    Hi,
    It has been a month and a day since my first round of Botox. For the first four days my right arm and hand were pretty much useless. It felt like a pinched nerve that left the arm weak and in pain from around my neck on down, however that did not last. I have not had a headache free day but I have had some pain free days. It seems that when the pain is on the left, until it is really severe I experience the symptoms of migraine but not the pain. When it moves to the right the pain is as strong as ever. Once the pain is greater than a seven on the left I have no problem feeling it, but it is usually too late to take an abortive medicine by that point. Suggestion? Is this normal? Does it get better with the second round?

  • #41728
    Profile Photo
    Ellen
    Participant

    tinallee – It’s great that you are seeing some changes with your first dose of Botox. It is likely that you will continue to see good things through your third round of injections. Nobody can guess what your response will be like, as we are all different, however it seems obvious it is doing something.

    That said, remember that if you are worried about this at all, you should contact your doctor to be sure you’re okay.

    I go in for round 2 on Monday. I will let you know what my experience is like when I continue with the diary! Stay tuned :)

  • #41729
    Profile Photo
    tinallee
    Participant

    Ellen, still waiting on the round two update. It seems the good benefits of round one have already worn off for me so I am looking forward to round two. Although there was no obvious reduction in the number of migraine days, there were the pain free days on the left where only the other migraine symptoms were present. That was promising. The pain has returned but that does not mean it will not stay away longer the next time.

    I did learn one thing during this. Because my insurance does not pay for Cymbalta,which is one of the preventatives that I take, I have to pay for it out of pocket. I did not have the money to pick it up and therefore dropped it “cold turkey” for a few days. That was a BIG mistake. Between the increased migraine pain, the high blood pressure, the rapid pulse, extreme lightheadedness, sometimes difficulty breathing and fluttering sensation in my chest I found out that I did not want to do that again. I am hoping the Botox will be successful and that I can start working my way off of some of the daily meds (the right way of course).

  • #41730
    Profile Photo
    Nancy Bonk
    Moderator

    Hi Tinalee,

    I hope you don’t mind my input here, Ellen is at Headache on the Hill and will be back in a day or two.

    I’m sorry you found out the hard way it’s not a good idea to suddenly stop taking certain medications. Sudden withdrawal can even produce seizures in some people, thankfully that didn’t happen to you!

    Before you taper off your preventive medications, map out a clear plan with your doctor on how to do that, OK?

    I withdrew from methadone (for chronic pain) once WAY to quickly and can absolutely sympathize with you – it’s awful.

    We’ll be keeping our fingers crossed that Botox works for you! Positive thinking goes a long way

  • #41731
    Profile Photo
    Ellen
    Participant

    Oh Tinalee, I am so very sorry that happened to you! As Nancy said, making any changes by adding or subtracting anything at all to your regimen really needs to be discussed with your doctor. This keeps you safe. Even something simple like a vitamin can cause problems for some people in some circumstances. It is a very careful balancing act we have to deal ith every day, isn’t it?!

  • #41732
    Profile Photo
    Sabella Marconi
    Participant

    3 months ago i done Botox treatment. Being a first-timer, I was not sure what the results would be. But my confidence got a huge boost after the first session. It was just unbelievable how the doctor has changed my face appearance with the first series of injections.Results are really positive.I am following regular sessions of botox treatment.

  • #41733
    Profile Photo
    Nancy Bonk
    Moderator

    Thanks for sharing Sabella!

    Ellen and Teri are both having Botox and writing about it in this articles if you want to take a look;
    http://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/

    http://migraine.com/blog/botox-chronic-migraine-experience/.

    Nancy

  • #41735
    Profile Photo
    jazzmine
    Participant

    Wow. I can’t believe how many varied experiences we all have had/are having with Botox. I had my first round of 31 injections with a certified Pain Management specialist who takes care of other pain issues I have on Feb 24. I got almost immediate relief. I think I had 2 mild migraines since the treatment. Right now, I am due for a total knee replacement in 2 days, and have had to reluctantly go onto Tramadol for severe pain in that knee. I don’t know if I’m getting rebound headaches due to that, or if my migraines are coming roaring back. Fortunately the headaches aren’t even moderate…but there’s the Tramadol that I’m taking. I’ll soon be on ultra strong pain meds, but somewhere in the next months I’m sure I’ll need another round of Botox, which I won’t hesitate to get. I’m certainly cautious of what you’ve all gone through. And I assume I’ll end up joining the rank of side-effect-drop-outs. But for anyone in the “considering it” stage, I worship Botox right now for 3 months of giving my life back to me. Except for this knee taking over my life-altering “headache”, I’ve been in love with Botox! My heart goes out to all your heads – and I DO mean that! Susan

  • #41736
    Profile Photo
    Ellen
    Participant

    jazzmine – I am so sorry for what you are dealing with, yet at the same time so thankful that you have seen some results with Botox treatments :)

    I had 4 nearly back to back surgeries at one point, including having both shoulders fixed. My doctor warned me “This is the most painful surgery a person can endure, so I’m gonna really work hard to manage your pain.” I didn’t tell him that I was going to have to refuse pain meds, but I survived that first surgery, physical therapy and recovery without them. When I had to have the other shoulder re-done as well, he got angry with me, telling me “You can’t have this without pain management!” It took some convincing that, I had done it before, I could do it again. And I did. Mostly. I had one or two seriously bad days on shoulder #2 that I was in serious shape, and it was triggering Migraines for me too, so I gave in on those days.

    The bottom line is that I was so afraid of MOH and having to go through the process of no Migraine treatments again for months, that it was a pretty easy decision. Migraine trumps even shoulder surgery.

    I can’t advise you what to do in your own situation, but I would be seriously careful that you don’t end up in MOH as this could potentially cause problems with your current treatment. I would hate for this short term experience with your knee to permanently alter your life because it has led to progression of your Migraines, worsening of the attacks or changes how your body reacts to current treatment that is working. I know pain in other parts of the body can be hard too, but sometimes it’s a matter of getting through the short term so you can survive the long term. Maybe you could talk to your doctor about it. Sometimes joint pain treatment can include numbing medicine that is put directly into the joint via a pump, eliminating the need for opiates etc that can cause MOH. Why don’t you talk to your doctor and see what your options might be…

  • #41737
    Profile Photo
    marabelle
    Participant

    I want to relate my experiences with Botox in order to encourage those considering the treatment. I had my fourth round a week ago. My doctor advised that up to 195 units can be injected and that is what he did. I also have fragmented Torticollis of the neck. I had the first migraine requiring Zomig this morning. A week after the injections r and 11 days since the last Zomig! The month of April, I only required medication 9 days. I also use Indocin, baclofen and reglan for les severe migraines. I am very pleased with the improve st I have received from the injections. Several headache specialist advised me that improvement is cumulative after four or five treatments. I found real improvement after the third round. I was able to travel to Europe for 18 days and my migraines did not ruin my trip overall. In summary, the treatments have given me hope that the illness is being managed finally and I can feel better. I encourage those considering Botox to find a highly qualified headache specialist and not to worry over the pain from the injections. Yes, it hurts but only for a short while and the results are worth the discomfort.

  • #41738
    Profile Photo
    Ellen
    Participant

    marabelle – I notice you mentioned having torticollis… yet they are giving you Reglan? Are you having any increased spasming with the Reglan? This is a drug that is one of the worst for causing tardive dystonia which can become permanent. If you already have dystonia, you should be aware of its potential to worsen your torticollis and make an informed decision whether or not you wish to continue it. Talk with your doctor and make sure this is really the best thing for you. Zofran is just as good at controlling nausea, but doesn’t come with the dangers of Reglan. Here is some information for you:

    How Can I Keep My Medicines Down so They Will Work? https://migraine.com/blog/how-can-i-keep-my-migraine-medicines-down-so-they-will-work/

    What is Dystonia? https://migraine.com/blog/migraine-triggers-and-comorbidities-dystonia/

    Avoidable medications list: http://www.spasmodictorticollis.org/media/pdf/Broch-Meds.pdf This is not meant to be a complete list. Some meds used in Migraine are not included. One I know of is memantine (Namenda). It is a good starting point though, and will be useful in talking with your doctor

  • #41739
    Profile Photo
    marabelle
    Participant

    Ellen, thank you so much for the information provided. I did not know about the problems associated with Reglan. I will do more research and contact my doctor. I use the medication once or twice a week. It was prescribed by a headache specialist at Jefferson headache center. Neither of the two subsequent headache specialists seen warned me of this possible problem.

  • #41740
    Profile Photo
    minddoctor
    Participant

    Hi everyone, I’m new to this forum and am so happy to have found you all! I am a Clinical Psychologist and I used to work with chronic pain clients, but I will admit here that I had NO IDEA about the depths of chronic pain on the psyche until experiencing it first hand.

    About 1.5 years ago I was in a terrible car accident that left me with a mild traumatic brain injury as well as chronic and completely debilitating migraine headaches. I had never experienced a migraine before my accident, but since then have had them at least 15 days a month, some lasting for up to 10 days in a row. I had to redefine what a #10 actually means to me on the pain scale. I had to learn to cope with the isolation that occurs during chronic pain (can’t work, talk on the phone, see friends, etc. during h/a), as well as the emotional anguish that follows. I had to learn that some days I couldn’t do ANYTHING; can’t read or write, can’t look at a tv or computer screen, can’t exercise, can’t garden, paint, swim, surf, hike, ski, cook, eat, sleep, etc. etc. All the things that once made my life feel meaningful and satisfying.

    For the first year I used only rescue meds like Immetrex and pain meds like Tramadol and Codeine. Not very effective in my case. I then moved onto preventative meds, like Inderol and Verapamil, but while both of these medications offered some relief, they actually crashed my vital signs – very scary!

    Last February I tried my first round of Botox – I am fortunate enough to be under the care of Dr. Cowan at Standford Medical Center in CA, who is one of the best experts on headaches in the US (check out his book, The Keller Migraine Method, a very holistic but science based approach to coping with this ordeal, plus he’s a migraine sufferer himself). The 31 injections were not so bad, but after about 2 hours, I experienced one of the most brain crushing migraines ever. For the next two months I had at minimum a tension headache up to the worst of the worst migraine nearly every single day. Then, suddenly, they completely went away! I had 4 mild tension headaches but they only lasted a couple of hours, but zero migraines for a full month! I finally started to feel like myself again. That’s when I really got perspective & recognized how emotionally taxing chronic pain is to endure, and how easy it can be to fall into a sense of hopelessness, anxiety, and despair.

    Sadly one week ago the headaches started to return, first as short-term tension headaches, but progressing into full blown migraines that have left me bed ridden for the past 3 days. I just spoke with my treatment team at Stanford as I was extremely nervous about my upcoming trial #2 of Botox this Friday – I’ve got to travel across the country to be Maid of Honor in my sister’s wedding next month, and I can not imagine repeating the horrible two month period I experienced that followed trial #1.

    My team has informed me that effectiveness should improve with 2nd and 3rd trials, and side effects should lessen. However they are frank enough to explain that this is all a relatively new science (Botox was only approved to treat migraines in 2010 I believe), and that everyone will experience treatments in different ways. Given that I got a pain free month out of trial #1, I’ve decided it’s worth the gamble to try again, and truly hope I won’t have to miss my sister’s wedding.

    I could go on and on about all that I’ve learned from this experience. It’s all the tiny things, like trying to get my husband to understand that not only can I not make dinner or clean the kitchen after he’s been at work all day, but that I can’t even be near him when he does the job as the smell will make me ill and the clanging of silverware feels like long needles being pushed through my ear drums. It’s having to tell one of my oldest friends who I haven’t seen in a decade that despite the fact that she was in my hometown I could not visit with her as I couldn’t lift my head off the pillow. It’s the guilt that swallows me up when I’ve made a commitment to someone that I can’t fulfill because of pain, and the anxiety about even making any commitment in the first place because I never know when I’ll be unable to function.

    My heart goes out to everyone with this condition. Stay hopeful and recognize how strong you are to be dealing with all of this day after day, with no guarantee of when relief will come. We are all warriors here.

  • #41741
    Profile Photo
    Ellen
    Participant

    minddoctor – Thank you so much for sharing your story here. I’ve shared my own journey with Botox as I go. The diary begins here if you’re interested: https://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/

    You are very lucky indeed to have Dr Cowan as your doctor! I’ve found him to be extremely compassionate and patient centered, which is so important when you’re chronic.

    I’m very sorry you’ve learned this way what it is like to deal with chronic Migraine. We are in a club we wish never existed. That said, there are ways we can still choose to live and be happy despite our experience. We can’t choose our pain, but we can choose how we live with it. I think it takes a long time to get to that point though. For me, it was much like surviving the stages of grief: https://migraine.com/migraine-and-mental-health/eight-emotional-stage-of-living-with-migraine/ Sometimes I personally have to revisit some of those stages for a little bit, which is always a little overwhelming.

    Pain is exhausting.

    Good luck with round #2 and your wedding plans. Please get back with us and let us know how it goes. The more people read about these experiences, the better prepared they are when they do it for themselves. Botox isn’t for everybody, but you won’t know until you try it. My fingers and toes are crossed for you!

  • #41742
    Profile Photo
    minddoctor
    Participant

    Thanks Ellen, appt. is tomorrow. Will keep you posted.

  • #43364
    Profile Photo
    melaniemonroe
    Participant

    I go on the 20th of June for my 3rd round of Botox. I can only say that they really hurt! I am still having headaches, think sometimes I’m the barometer for the neighborhood. I can say that I have seen a small reduction if frequency of migraines, but no change in severity or length. My headaches can last from 1 day – 10 days, and I am still having more than 15 a month. The options for we heart patients is limited.

    I just wish someone would really help me. The neurologist doing my Botox will only do that, nothing else. I’m not asking for the moon here, just even some sympathy from the drs I see. I also live in an area where drugs are rampant, so I have problems getting the medication I need. Usually end up in the ER for a shot or two….

    Does anyone know anything else that could help? Nancy sent me some info, think I have tried almost all of them…

  • #43400
    Profile Photo
    Nancy Bonk
    Moderator

    Hi melaniemonroe,

    I know sometimes it can feel like we have tried every medication known to man for migraine. The feeling “been there, done that” is quite strong. But it would take close to 25 years to try each medication that is available for migraine at the right dose and for the correct amount of time!

    I guess my point it that it often feels like we’ve done everything, but usually there are still some options out there, really.

    Triggers – have we talked about trigger identification and management?

  • #43464
    Profile Photo
    PShaw
    Participant

    Hi all,
    I am new to the group and it is comforting to have a space where I can communicate with other chronic migraine sufferers. I’m scheduled for Botox next month. I’ve had two Botox treatments four or five years ago, but I didn’t see a lot of improvement in frequency or intensity of my migraines. My neurologist feels hopeful and says that the treatments are a more refined now and people as seeing better results. As always, I remain hopeful :-)

  • #43468
    Profile Photo
    Ellen
    Participant

    PShaw – Staying hopeful really is key for us when we’re chronic. I’m glad you’re able to hang onto that!

    Your neuro is right, the injection placement etc has changed over time. It’s good to remember too that it takes at least 3 cycles to really get much of an idea if it is going to be helpful, so don’t give up too quickly!

    I’m going in for my 3rd round on Tuesday. My Botox wore off at week 10 instead of 12 which my specialist tells me happens occasionally. I guess I really didn’t realize how much it was really helping until it was gone. Some people get fewer attacks, but I am one that got lessened severity. I didn’t appreciate it appropriately until my injections wore off. *yikes*

    Good luck, and let us know how it goes!!

    ~Ellen

  • #43579
    Profile Photo
    ChoctawCharli
    Participant

    My neurologist has suggested Botox for my chronic migraines. Mine are caused by a TBI while I was in the military. We have tried everything else since they began, and they have only increased in intensity and frequency through the years as the scar tissue has grown thicker. The very idea of more needles in my head scares the heck out of me. I am concerned about more scar tissue forming or clots from the Botox. Where can I find out about side effects of the Botox or something that will relieve my fears before I feel better about agreeing to this procedure?

  • #43605
    Profile Photo
    Ellen
    Participant

    ChoctawCharli – You really need to talk to your neurologist as only he/she knows your full history etc. Everyone is different where these medicines are concerned.

    As to scar tissue etc, I’ve never heard of scar tissue as a result of Botox injections. The needles are so tiny – like a hair – that they are really barely felt. I talk about it quite a bit and give lots of photos in my Botox diary which begins here: http://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/ I have had some occasional bruising, but I am a bleeder. Every once in a while I hear of someone getting a small bruise from an injection, but it’s not often. Since the injections aren’t going into a vein or artery, clots usually aren’t going to happen.

    Teri has a link on her botox article where she talks about her experience. Might be a good read for you too, as we both are different and that might be helpful to you: http://migraine.com/blog/botox-chronic-migraine-experience/

    When it comes to medication side effects etc, I like to point people to epocrates for good, up to date information that is helpful: https://online.epocrates.com/

    I hope this is helpful :)

    ~Ellen

  • #43713
    Profile Photo
    wao618
    Participant

    I had three rounds. The first two actually went pretty good. For about four weeks I had the migraine symptoms but no pain. The third round however did nothing so Botox ended up not being a treatment option for me. For people who it does work for it has been a miracle treatment.

  • #43722
    Profile Photo
    Ellen
    Participant

    Hang in there Judi! <3 Please let us know how you’re getting along…

  • #43742
    Profile Photo
    Ellen
    Participant

    Judi – It may take some time. The way I try to look at it is this: My doctor now knows how to treat me more precisely for my personal issues. The second set went smoother than the first. My third set was done by another physician and so left me with more weakness in the shoulders than the first leading to increased Migraines for now. But, if I treat the spasms that result from the overuse of other muscles, I do pretty good. It takes finesse though, and I’m not always nearly as good at figuring out how to treat myself each day as I wish I was! Good luck hon… There are many more things coming down the pipeline, so this is not your last option.

  • #43973
    Profile Photo
    Chris Hicks
    Participant

    Hello to the group!

    I would like to share my experience of recieving Botox injections for Chronic Migraine.

    First, let me talk just a bit about the experience of the actual injections. Honestly, both my first and second round of injections were not that bad. After having nerve blocks and other invasive procedures these small injections seem pretty minor (especially in comparison to the pain of migraine). Yes, there are a lot of injections, but each is very small. Of the whole round there are one or two that seem a bit more tender and sting a bit more than the others, but nothing significant. I have not experienced any negative side effects like muscle weakness or droopy eye lids.

    I am about four weeks out from my next round of Botox injections for Chronic Migraine. This will be my third round of injections. I can say that I have experienced more positive change from the Botox than from any other treatment I have tried to-date. I will not go through my whole list but let’s just say that over the last twenty years of working with neurologists and other healthcare professionals I have tried many, many treatments (lots and lots and lots of medications).

    Here’s what I have experienced with the Botox. For me it seems to take two and a half to three weeks from the injection date to see real improvement. This improvement usually eases in gradually over a couple of weeks. At its best I do see a reduction of both intensity and frequency. The greater reduction is in frequency. I would say at the best I see something close to a 40% reduction in frequency. There is a reduction in intensity as well, but that is not as significant. At its best it may come close to a 30% reduction. Don’t get me wrong these are great numbers, especially considering that all previous treatments have had no impact.

    So, starting at about three weeks out I start to see improvements. The decrease in frequency and intensity carries for maybe four weeks at its greatest. At that point things start to slide backward with the improvements eroding away as frequency and intensity start to ramp back up. This trend continues as I move toward the three month mark (when I can go for the next round of injections). This is the hard part. Having experienced some relief makes sliding back into a greater state of sustained pain all the harder to deal with. This is where I am today. The effects of my last injections have significantly eroded at this point and my pain is increasing, as is the frequency. I find this draining, frustrating, depressing…

    I know that relief is about six to seven weeks out at this point (four to the injections and another three for the improvements to show up). Honestly, that seems like too far away as I sit here, today, with another migraine.

    My current research and efforts at finding complementary treatments are focused on something to supplement the Botox. I would love to find something that could help the Botox at the best times and help to control things between the injections. So far that eludes me. I will also add that my current neurologist is very compassionate and, importantly, is board certified in headache medicine. I definitely see this as important when dealing with Chronic Migraine.

    I am sure to post another update after my next Botox injections in August. I have read that some people experience greater benefit as they continue with the injections. I truly hope to see even greater gains after the thrid round!

    Take Care,
    Chris

  • #44040
    Profile Photo
    Nancy Bonk
    Moderator

    Thanks for the information Chris.

    When you see your doctor, explain to him how long Botox seems to last and see what he says.

    Nancy

  • #44184
    Profile Photo
    kristenbeth1
    Participant

    Hi All,

    I have had migraine w aura since I was 11 years old (25 years?) And although very severe when I get them, they have been episodic (1-2x per month) In the past year 1 have had 2 “status migraine” lasting 10+ days for which I had to be put on steroids.

    In May I got a migraine that just “did’nt go away”, really ever. Totally on the left, and varying severity. Went to a headache center and they enrolled me on a Botox clinical trial (as I don’t qualify via my insurance, I’ve only been on 2 preventatives, Topamax and Zonegran)

    Had 1st botox about 3 weeks ago and my experience has been pretty negative so far and I don’t know if I rushed into Botox nor if its worth going forward. I got a severe headache 2 days after injection and a severe migraine last week. The most worrisome part is I have severe neck pain and have a constant “hangover” like headache that has been waking me up at night, I have to take xanax to sleep. Dr. gave me indomethicine( it has helped) as the constant left sided pain is still there along with what I think are Botox side effects, hangover, tightness in my jaw and ears, some pain in my teeth??!!

    This is weird and I don’t know how to go forward, My life currently revolves around headache and I want my life back, my Dr thinks I am becoming depressed (duh…I have had a headache for 3 months and it has taken my life away) Getting a second opinion tomorrow, any thoughts from people going through similar things would be great. Thank you and you all have my sympathy!! This is a hell no one can imagine unless they are in it.

  • #44187
    Profile Photo
    merrie
    Participant

    Hi,
    I am sorry you are having a tough time thus far with the botox
    I haven’t used it yet…but I have read on here that it takes about three weeks for it to even start working as far as ha prevention goes,and that the effects are cumulative. So the second course goes better than the first etc. I know that the steroids have not worked for me this time, although I did go about eight hours without a migraine for the first time in over a week (no idea why but I’ll take it). Anyway just thought I’d give that info about botox, and maybe a little hope. I know what you mean about drs saying “I think you are depressed”…it’s like “no kidding if you had a migraine for several months with almost no relent, you’d be depressed too!” Can be very frustrating. But unless someone has been in our position, it’s hard to understand I think. Best of luck to you with your second opinion. I hope you found a migraine Dr. I haven’t had a good run with the regular neurologist.
    Merrie

  • #44191
    Profile Photo
    kristenbeth1
    Participant

    Merrie,

    Thank you for taking the time to write back, it means a lot as I know no one else with this problem.

    I hope you find relief as well, I guess this is a condition to manage, not to cure. Thus far botox is not the answer for me :( I just now have new and different headaches.

    I know we are supposed to be positive, but this sucks. At times I want to dig these nerves out of my skull.

    KV

  • #44192
    Profile Photo
    Chris Hicks
    Participant

    KristenBeth1,

    As with any treatment it seems that there are a wide variety of reactions and effects. From the research and reading I have done it is clear that something, like Botox or any other treatment or medication for that matter, can be very beneficial for one person and have severe side effects and negative impact for another.

    I think Merrie makes a great point about the time it takes Botox to “kick in”. For me, personally, it does take a good three weeks after the injections before I start to see any real change in the migraines. I have been told that for others it can be as short as two weeks. I know that, in the past, as I tried many, many medications as preventatives my neurologist at the time would tell me, “You have to wait four weeks (or six or eight) before you see any impact from this medication.”

    Believe me I know how difficult it can be to be in such a place of severe, constant (or almost constant) pain and to be told “You have to wait…”. The thought of enduring even more pain is sometimes unbearable. The reality, however, is that if you want to give a treatment a good chance it is necessary to follow the prescribed course. In my opinion the appropriate “out” before reaching the point where your healthcare professional is willing to move on to something else is if you experience side effects to a level that you are unwilling to continue. Such a journey, and I have been through more than a few, is best taken with a strong and compassionate partner in the form of an experienced neurologist who specializes in treating migraine.

    I hope that the Botox ends up helping and that the negative side effects lessen and go away. If not, there are other things to try. You mention that you have only been on two preventative medications, correct? There are so many more that exist and there is a great chance that something will work for you! I encourage to be hopeful. There is something that will help you!

  • #44195
    Profile Photo
    Chris Hicks
    Participant

    KristenBeth1,

    An additional comment…

    I have had a migraine for the past 10 days (non-stop). The intensity goes up and down, but it never leaves. My neuro prescribed Migranal nasal spray. I have done this before. It is referred to as a 3-day “burst”. Usually Migranal is an abortive to be used like oral meds, taken when the migraine starts. In a burst one uses it differently. I am in the third day of taking on spray per nostril every eight hours.

    I am happy to say that today is the first day I have awakened without the migraine. Thank goodness that day 11 is starting on a better note.

    I encourage you to work with your neuro to find something to break the cycle of pain you are in. Obviously one cannot live like that without beginning to feel hopeless and depressed. Suffering from chronic migraine I often find myself falling in deep dark states of depression. Without family supporting me through these dark times I am not sure what I would do.

    I also find comfort in knowing that communities like this exist. Here we find stories from others who share our condition, our disease. We can vent, rant, rage, comfort, question, etc. in a group of people who truly “get it”.

    Take care and I hope your pain subsides soon!

    -Chris

  • #44197
    Profile Photo
    kristenbeth1
    Participant

    Thanks so much for your words of encouragement. I do currently have a significant other that is very caring and concerned, he is even paying for acupuncture (which I did enjoy and will probably continue)

    I too have had some success with Migranal, although there are some strict dosage limitations and I seem to remember it got a bit expensive, but I found it better than the triptans.

    I had a very busy social life and have a job where I manage 17 people, all tough to deal with after this chronic stuff began, my friends are wondering where I am…It’s tough to make plans or make the excuse “I have a headache…like always” I can not count how many times I have just gritted my teeth through parties, nights out and work. Sigh…

    Thanks again :)

  • #44199
    Profile Photo
    Chris Hicks
    Participant

    Kristenbeth,

    It is great to have a spouse that is supportive. My wife is very compassionate and understanding.

    Interesting that you mention acupuncture. I went to an acupuncturist for about a year (stopped going about 18 months ago). It was helpful, but at $70 per session and weekly sessions it got too expensive very quickly. Of course insurance did not cover it. At the time I had a better paying position as a healthcare consultant. Now, having taken a lesser paying position close to home, I simply cannot afford to see this healer any longer.

    Migranal is something I have used a few times over the last decade. I have used it both as an abortive and in the “burst” method I described earlier. I have not used it in a while as my insurance changed the amount they cover. Lately, one box of vials costs me $200 out-of-pocket. This is just too expensive for my current budget. Thankfully my current neuro gave me some samples so that I could do the three-day burst this time.

    I understand your statement about life and work. I have held positions in managment and, as a consultant for two years, had positions that involved a lot of stress, a lot of meetings, a lot of pressure to deliver in short-order. I have developed what I consider to be a strength in that I can put up a “cover” to the outside world. I can have a migraine but still get through a meeting. I can have a migraine and still attend some mandatory function.

    The flip side of that is the tremendous amount of personal energy it takes to do this. I often find that I can carry on a meeting, despite my pain, only to get to the other side even more drained that I was. Lately there has been some talk of whether or not it is wise to “push through”. I must say I am beginning to see the impact of doing this long-term.

    For now I continue to push my way through migraine at work simply because I cannot afford to stop working. In my social life I tend to retreat in the face of the migraine, which for me, if extremely frequent.

    I am not sure there is much of a solution but to keep searching for some treatment(s) that will help me better control these migraines, this disease, that has destroyed my lfie.

  • #44216
    Profile Photo
    Nancy Bonk
    Moderator

    Hi kristenbeth1,

    I’m sorry your experience with Botox was unpleasant. If you have only been on three migraine preventive medications, Topamax, zonegran and now Botox you are in luck – there are about 100 you can try!! There are herbal supplements, beta blockers, more antiseizure medications, antidepressants used for migraine prevention and on and on. Here is information on migraine preventives: http://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.

    It also sounds like you may need to see doctor who is better versed in migraine disease. Migraine specialists are doctors who are board certified in headache medicine and are the experts who treat migraine and headache patients. Here is some information on how migraine specialists are different and then how you can find one: http://migraine.com/blog/looking-for-a-migraine-specialist/ http://migraine.com/blog/how-are-migraine-specialists-different/.
    How did your appointment go?

    Nancy

  • #44217
    Profile Photo
    Nancy Bonk
    Moderator

    Chris,

    Great news to hear your migraine broke!!! Let’s keep it that way :)

  • #44227
    Profile Photo
    kristenbeth1
    Participant

    All,

    again thank you all for your words of encouragement. I am fortunate enough to live outside NYC and have seen some of the best specialists in the area, I can’t complain about the Doctors, they are specialists but don’t have a magic wand.

    I did see a Neuro (headache specialist) that I had seen a few years ago who has a longer history with me. She does not believe that what I am experiencing is typical chronic migraine. Although I have had migraine since I was a child and when I get them they are freight trains, they are episodic. Historically they resolve.

    One day I got a headache that did not go away, I probably remember the day and time. The Neuro does not believe most people go chronic over night, which I did, and its been a downhill slide ever since.

    So she is thinking hemicrania continuia or new chronic daily headache, idk…I remain hopeful. I am getting all the help I can get. Anyone else have a similar experience?

    Chris, I know you feel this has ruined your life, and I have felt that so many times. People have judged me as “always sick” If they only knew how many times I put a smile on my face and acted like I was fine when I was in agony. The sick they see is when I can’t get out of bed…there’s a lot of ‘sick’ I don’t talk about. This problem has caused me to leave jobs and relationships.

    That being said, always remember there will be good days, there are many people living with chronic conditions, some very deadly. My ex-husband has MS, is severely disabled and is only 45. I just always tell myself there are worse things.. :)

    Although the statement “I would’nt wish this on my worst enemy” is false, I would, I want those who judge to experience just that, my migraines.

    Thank you all again, now I have a bunch of new drugs to take, I guess this is how its gunna go.

  • #44273
    Profile Photo
    Chris Hicks
    Participant

    Counting down the days until my next round of injections (August 20!).

    I am struggling this morning. My migraine is pretty severe. I “pushed through” and made it to the office but I am really struggling here. It hurts.

    Oh well, “this too shall pass”, right!?!

  • #45052
    Profile Photo
    Rebeccapa
    Participant

    I think mine started wearing off yesterday. I am scheduled for the 27th. I can only hope last night was a fluke because if I didn’t overdose last night I never will. My head hurt too bad to wash my hair and hurt too bad to even have a scrunchie in it. Needless to say I look rough today but at least I was able to pull it back this morning.

    Yes Chris “this too shall pass!”

  • #45057
    Profile Photo
    Chris Hicks
    Participant

    Update… I had my injections (third round) on the 20th of August. I am still waiting for more improvement. I have noticed a drop from 9′s and 10′s to 8′s and 9′s. I would love to see a greater improvement and it might still be coming. It seems like it took the first and second rounds about three weeks to get to full-effect.

    Fingers crossed…

    Of course I am also right on top of an admission to an inpatient program for chronic migraine in Ann Arbor (Chelsea actually, about 20 miles outside Ann Arbor). I am hopeful that something will help me find some real and lasting relief because I feel pretty worn-out and beaten most days.

  • #45183
    Profile Photo
    mkrupp
    Participant

    I had the Botox treatment on Aug 13th. It was a really rocky start where I was have a lot of eye pain. Which I found from my doctor that my eyes were straining. At the 3 week mark I felt better. I went 12 days with out a headache. Plus I went to a concert and didn’t get a headache from that. However my migraines came back for the last four days. I’m not sure if I want to take the 2nd round in two months. Can anyone tell me if the 2nd round is just like the 1st round? Or is it easier?

  • #45217
    Profile Photo
    Ellen
    Participant

    mkrupp – My experience, and those of many, many others, is that the effects are cumulative. Most doctors tell you at least for 3 cycles, but many doctors are finding the effects cumulative for 7-8 cycles. This means there is lots of room for hope for you yet!

    I just had my 4th cycle, but if you’re interested in reading my Botox diary to see all the details, here’s where to start: http://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/

    ~Ellen

  • #45284
    Profile Photo
    toddchaney
    Participant

    I got Botox treatment around 3 months back and I highly recommend it. It gave me 8-10 weeks free of migraines, and just a few minor headaches during that time. Initially, I wasn’t sure of undergoing the treatment but I am glad I did. The doctors, counselors at Lewis Pain really did a great job. There was a lil pain…but it was worth it!

  • #45338
    Profile Photo
    tinallee
    Participant

    Hi Ellen,

    I started about the same time you did with the Botox injections. Round two wore off WAY too quickly. Round three took almost a month to take effect but seems to be working now. You are one cycle ahead of me. My doctor is not even sure if this is working. I was so excited after the first round. So when you say the effects are cumulative for 7-8 cycles does that mean it may take that long before they start not wearing off early (quitting suddenly/disastrously) and take effect immediately or that the shots stop wearing off at all, or just that migraine relief is still better than prior to Botox some of the time? At least one month out of three and sometimes two out of three I still meet the definition of chronic migraine and I am not sure whether to continue and hope or look for another solution.

  • #45352
    Profile Photo
    Ellen
    Participant

    tinallee – I think that it’s possible that any or all of the things you asked about might possibly be the case. All patients are different. We are a complicated bunch!

    I really wish this had worked like the magical treatment I’ve seen some patients end up with. We shouldn’t get discouraged when that miracle doesn’t happen for us. It just might take a longer time is all. Hanging in there is the only way we’re really going to know what our maximum benefit is going to end up being. I personally still feel different after each injection cycle. This current cycle included. I know it’s helping me. Maybe it will take a few more tricks to add together to get me back under control, but it will happen. It’s just a matter of time. You hang in there too! :)

    ~Ellen

  • #45354
    Profile Photo
    Ellen
    Participant

    toddchaney – Thank you so much for telling your story! I know it will be an encouragement for others still considering the treatment. Thank you so much for supporting other patients *out there*!

    ~Ellen

  • #45356
    Profile Photo
    Rebeccapa
    Participant

    Botox gave me back a a life – I quit being admitted to the hospital. I was able to do things w/friends and family. Not constantly in pain. NO my migraines are not gone but like I have said it is a treatment not a cure. I still get about 1 a month that I still have to go get a shot or ivs for but for me Botox is a miracle drug!

  • #45358
    Profile Photo
    Ellen
    Participant

    Rebeccapa – I am SO glad this has been helpful for you. Someday they will learn more about this disease and be able to treat us even better, or at least give us more targeted options. Until then, I love that we have something. Anything that helps us get our lives back! I’m so glad YOU’RE one of those who is having such amazing success!!

    ~Ellen

  • #45368
    Profile Photo
    ChoctawCharli
    Participant

    My migraines started after a TBI while on active duty. Over the years they have increased in frequency and intensity. To the point where I was going to the hospital for treatment 3 to 4 times a month, not to mention the almost daily migraines. The VA finally approved Botox treatment for migraines in late spring and I had my first series in early August. I was told that in my case, it would probably take a second or maybe even the third series before I would notice much change. I have found that to be true. I went through one of my cyclical relief phases and we hoped it was the Botox. But it turned out not to be the case. August was a pretty good month, only went to the ER once. But September has been near normal with three visits so far. My next series is scheduled for 29 October and I can hardly wait. Hopefully, they will be the extra kick in the “pants” my body needs.

  • #45389
    Profile Photo
    Georgia-R.
    Participant

    Hi! I had my first Botox treatment Sept. 26, 2013. I also have Fibromyalgia and the injections were not pleasant. It was not horrible and if it works I feel I can tolerate a few minutes of discomfort for the outcome. High barometric pressure is one of my biggest triggers. I am really praying this treatment helps!

  • #45391
    Profile Photo
    Georgia-R.
    Participant

    Rebeccapa so happy to hear you are doing well! When you get a short or IV what is the medication? I’ve been to the ER 2 times for migraine over the last 22 years. Once because I was out of my Relpax and the INS co wouldn’t refill for 3 more days (they are so ignorant!), and once because the Relpax didn’t work. Both times they gave me IV fluids and Phenergan along with Diladid. I really didn’t want the narcotic but the Dr insisted my migraine was too far gone to take anything else. Thanks for any input!

  • #45409
    Profile Photo
    Ellen
    Participant

    Georgia-R. – Do let us know how it goes. Try to remember that it may take several cycles to see the full effect.

    I’m on my fourth injection cycle. My Migraines have changed dramatically the last few months, and I’m hoping this is a good thing. Still are occurring daily, but the pain level is different, as is the pattern of how they’re occurring, which is a relief.

    ~Ellen

  • #45411
    Profile Photo
    Ellen
    Participant

    ChoctawCharli – First I want to thank you so very much for your service. We are very glad you have found us and hope that we can help in some way.

    Docs usually tell patients that it takes at least 3 sessions before you know the full effects of the injections. However, while at conference, there are many doctors talking about still seeing improvement 7 and 8 cycles down the road. This is what I’m counting on myself.

    There are so few treatments I am able to try, that I’m not willing to give anything up without a super good trial. At this point, I feel like I’ll be doing this for at least a dozen cycles before making any decisions to ditch therapy. It isn’t perfect – nothing is. I’ll likely have to piggyback multiple treatments to get significantly better. I’m okay with that. I didn’t get this way overnight, and I’ll not be getting back any faster. So long as it helps me, then for me, it’s worth it. The 5 minutes of little stings is nothing compared to what a lot of us go through with the frequent, sometimes intractable Migraines…

    ~Ellen

  • #45420
    Profile Photo
    Georgia-R.
    Participant

    Ellen, Its’ been two days and I feel achy all over and weak. Is this a normal side effect? I am thinking it is and will fade as I get used to the Botox?

  • #45424
    Profile Photo
    Shirleyanne
    Participant

    Hi everyone .

    I have been following Migraine.com for some time from England. It’s so good to hear other stories, I feel sometimes that those close to me must get fed up of my migraines. I am 57 and have had them since 8 years old. Anyway I have done all the drugs, plenty of diets, alternative therapies, occipital nerve blocks, and now await Botox. My problem is my fear of needles, I will probably need to be sedated in order to have the treatment. If it does not work my Consultant says I may be able to have the new Migraine Zapper as he called it. (Transcranial Magnetic Therapy) Do you have a blog on this?

  • #45427
    Profile Photo
    ChoctawCharli
    Participant

    Ellen, thank you for the encouragement regarding how many series I may have to have have before I begin to see some relief. In the mean time, I do take multiple meds, both prophylactic and acute. And go to the ER/Acute Care when I need to for my “cocktail”. Fortunately, the VA pays for all meds, treatments, and shots.

  • #45504
    Profile Photo
    Nancy Bonk
    Moderator

    Hi Georgia-R.,

    Yes, the symptoms you describe can be side effects of Botox and may lessen as time goes by. If you are concerned about this, or you find you are getting worse, don’t hesitate to contact your doctor.

    Keep us posted, OK?

  • #45508
    Profile Photo
    Ellen
    Participant

    Georgia-R

    Do you feel achy, as if you are sick, or achey where the injections were placed? There is a difference. The weakness can also be normal, but again, it depends on where the weakness is being felt. For example, if you had injections for Migraine, but can’t move your left leg, that probably isn’t associated with the injections and is a reason to get to your doctor.

    Does that help?

    Let me know how you’re doing. In my own case, the second and third weeks can be the most difficult. It takes a while for my body to get used to the changes.

    ~Ellen

  • #45510
    Profile Photo
    Nancy Bonk
    Moderator

    Hi Shirleyanne,

    We are so happy to see you posting. It’s nice to know there are people out there who truly understand what we go through, welcome!

    The needles they use for Botox are extremely tiny. Have you read any information on people’s different Botox experiences? Maybe this will help put you at ease; http://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/.

    Transcranial Magnetic Stimulation is not approved in the US but is used in Europe. We have a tiny bit of information on it here; https://migraine.com/blog/tms-device-for-migraine/.

  • #45512
    Profile Photo
    Ellen
    Participant

    Shirleyanne –

    Fear usually comes from the unknown. Have you studied carefully how the Botox injections will be done? Once you’re familiar with it, you will be much more likely to be able to breathe your way through the anxiety portion of your first trial.

    Since you know you have these issues, are you addressing them by techniques that might help you, such as distraction, or even meditation or biofeedback? Are you planning to have a friend or relative with you that you trust and can focus on when you feel like you’re losing control?

    Do you trust your doctor? Have you spoken with them and come up with a written plan how this will happen on the big day? I suggest you make a deal with your doctor, that they will talk you through the process as it’s being done. Knowing there will be no surprises will often be very helpful to patients.

    Here are two links I want to encourage you to read over and over again until you know what will be happening, by heart. The idea isn’t to make you more afraid, but to help get you used to the idea of each step that will occur.

    http://migraine.com/blog/the-injections-chronic-migraine-and-botox-diary/ A step by step and pictorial

    http://migraine.com/blog/botox-chronic-migraine-experience/ This post contains a link that shows you exactly where the injections will be placed. You can use this *map* to ask a friend to touch those spots frequently so you can work on getting used to the feeling of having those areas handled.

    Good luck, and I hope you’ll write back and let us know how it goes!! Hang in there. You can do this!!

    ~Ellen

  • #46233
    Profile Photo
    nancym
    Participant

    I am new to this forum and I must say that this entire website has been a Godsend. The information and people here are invaluable to a chronic migraine sufferer. I have suffered from migraines for over 20 years now. I am almost 50 and have tried just about every preventative medication, procedure and therapy out there. I have recently gone through my second round of Botox injections. The first round did not go so well as for several days afterwards I was in miserable pain. I didn’t notice much of an improvement in either the number of headaches or the severity. My second round was done a month ago. So far, I still haven’t seen much of a change. This has been the hardest year yet for me as I am having to see my neurologist almost once a week (sometimes twice) for pain injections. I am thankful that his practice offers an alternative to the ER; however, nights and weekends can be pretty brutal as my ER co-pay is ridiculous. My neurologist told me that he would not put me through a third round of Botox if the second one isn’t successful. It is discouraging for me but I am so glad to hear that it has helped others.

  • #46264
    Profile Photo
    Ellen
    Participant

    nancym,

    I’m so sorry you haven’t yet found relief from the injections. They don’t work for everyone, and even when they do, the results can be very inconsistent from one person to the next.

    When I hear about patients getting their Botox for Migraine from a non-Migraine specialist, I am always concerned that the injections are being done properly. There is a fairly new protocol that is more helpful to patients, and if your neurologist isn’t doing all 31 injections in their appropriate placements, that may be why you aren’t seeing any improvement. Additionally, a full trial of Botox is considered to be 3 rounds. In fact, I’ve heard specialists at conference discussing that they are finding that some patients continue to have improvement through the 7th and 8th rounds.

    Let me give you a couple of links to look at re: Botox injections and why having a specialist is so important, as well as how to find one near you:

    Botox: The Injections http://migraine.com/blog/the-injections-chronic-migraine-and-botox-diary/

    Botox: My Experience: http://migraine.com/blog/botox-chronic-migraine-experience/

    How are Migraine Specialists Different? http://migraine.com/blog/how-are-migraine-specialists-different/

    Where to Find a Specialist: http://migraine.com/blog/looking-for-a-migraine-specialist/

    I hope this is helpful :)

    ~Ellen

  • #46347
    Profile Photo
    marabelle
    Participant

    I just want to share a little bit about my current response to Botox. I had my first round in July 2012. I had my 6 th round of Botox 10 days ago. Only one migraine the next day. Right after the 5 th round, the improvement was immediate. I only had 7 migraine days in August, September and October. It felt like a miracle. The migraines were less intense and responded better to abortives.

    The last two months were complicated by hospitalization 2x for appendicitis and Bell’s Palsy. I just underwent Laproscopic appendectomy yesterday. I delayed the 6th round a week due to the Bell’s palsy. My migraine frequency shot up and luckily my headache specialist had an opening.

    I just wanted to encourage those considering or starting Botox. For me the treatment has definitely made my life less unpredictable and stressful. The injections are painful, but worth the effort needed for a full trial to see if it helps.

  • #46350
    Profile Photo
    Teri-Robert
    Participant

    Thanks for sharing, marabelle! It’s always helpful to be able to see how things work for others.

    Teri

  • #46353
    Profile Photo
    Georgia-R.
    Participant

    It’s been almost 2 months since my first Botox injections. The side effects have pretty much gone away. I had all over muscle aches and my neck was weak and sore for about a week. My Rheumatologist thinks the Botox triggered my Fibromyalgia to flare up. I have had a few less migraines each month but not sure yet if its coincidence or the Botox. I have another treatment scheduled the end of December.

  • #46358
    Profile Photo
    Ellen
    Participant

    Hi Georgia,

    As you know, Fibro can flare with most any change within our bodies. Any stress (including illness, etc) can make a body flare. Even the stress of exercise can cause a flare.

    If you stop and think about it, the Botox probably weakened your neck, which is what created the soreness and weakness for you. This soreness and weak feeling usually happens because muscles are being overworked, just as when you exercise a great deal. I would definitely talk to your doctor about it, but as an autoimmune patient who has to be uber careful about flares too, I can tell you that I had to make some interesting adjustments to my lifestyle to help prevent flares triggered by my injections. The Botox didn’t reduce my Migraine frequency, but did help with severity, so I do consider it a winning situation, and wouldn’t change my decision for a thing.

    ~Ellen

  • #48144
    Profile Photo
    larissataurins
    Participant

    Hi everyone,

    My 6th round of botox is scheduled and coming up next week but I am having serious second thoughts about continuing with it. I am wondering what you all think of my situation because I am having a really hard time making this decision.

    Since I started getting botox last February, it initially helped my migraine severity a little but the past two rounds have not helped at all. I am receiving the injections from a board certified headache specialist, so it is the correct protocol and dosage.

    The thing is, ever since starting the injections last year I have really unwell with unexplained symptoms. I have episodic attacks at least once a week of intense fatigue, chills, and nausea, that makes me equally disabled at this point as migraines do. Sometimes these attacks last a long time, and each time I get the botox injections it flares (same reaction to the flu shot as well). I have also had severe asthma, dripping sinuses/sinus congestion, and asthma. I brought all this up the the advance practice nurse who is the person who I have to communicate with at my headache specialists, and she said that the doctor believes that there is absolutely no connection between botox and these symptoms and wasn’t willing to discuss it further with me.

    I’ve had massive amounts of tests in the last year to try and determine other causes, seen a naturopath regularly, worked extensively with my GP who has given up. I just can’t live like this and I’m scared of getting another round.

    What do you all think? What would you do?
    thanks,
    Larissa

    • #48362
      Profile Photo
      Ellen
      Participant

      Larissa,

      Have you ever been evaluated for autoimmunity?

      ~Ellen

    • #48404
      Profile Photo
      larissataurins
      Participant

      Hi Ellen,

      I have Hashimoto’s thyroid antibodies – - not quite sure what you mean re. evaluated for autoimmunity. Is it a certain test? Or is it just the confirmation of having an autoimmune disease?

      thanks,
      Larissa

  • #48226

    I have been suffering from near daily migraines for over 25 years. Have had my fourth round of botox and it is helping lessen the pain, but not so much the frequency. I have been experiencing some side affects such as fatigue, muscle weakness and sinus problems, as well as the feeling of a heavy head that someone posted. I plan to continue as the migraines are worse but these symptoms worry me. The other day I fed the animals then went back to bed and slept from 9 am to 1 pm. I have no energy to do anything and have to force myself to clean and feed animals. I am also so weak that it is a challenge just to scrub out a dirty pan with a brillo pad. Is anyone else having these kind of problems?

    • #48241
      Profile Photo
      larissataurins
      Participant

      @migrainemigrainemigraine: I am having similar fatigue symptoms as you are since starting botox (see my post above). Not sure if it is the botox that is causing it though.

    • #48795
      Profile Photo
      Nancy Bonk
      Moderator

      Hi migrainemigrainemigraine

      The symptoms you describe can be potential side effects of Botox. Have you spoken with your doctor about this? If not please contact him/her and express your concerns, then let us know how it goes, OK?

      Nancy

  • #48600
    Profile Photo
    Amethyst
    Participant

    I am so happy to have found you all! I have been searching for information as I am new to the chronic migraine “scene”.

    Six months ago I had sinus surgery and woke up with a migraine (had very few before this point), which has been unrelenting since. The pain is variable in nature, so I get a break when it goes down to the lower levels of the pain scale.

    My neurologist has told me that if he didn’t see a change in frequency with my preventatives this month, he would be recommending Botox treatment. Although I’m feeling a little desperate for some pain releif at this point, from what I’ve read, I’m wondering if he is rushing into this treatment?

    I understand no one here can give me medical advice, however, I would love some opinions on this. I’m quite lost. Six months ago I had only experienced a handful of migraines in my 26 year lifespan, and suddenly I’m dealing with daily chronic migraines. I just don’t want to jump the gun…

    • #48800
      Profile Photo
      Nancy Bonk
      Moderator

      Hi Amethyst,

      Welcome! We are so happy you are here and you are correct, we can’t give you medical advice but we can provide you with support and education. So let’s get started!

      Botox is one of five medications FDA approved for chronic migraine prevention. It works wonders for some, not so much for others. You can read about some experiences in this post; http://migraine.com/blog/botox-chronic-migraine-experience/ and http://migraine.com/blog/botox-for-chronic-migraine-my-diary-introduction/.

      Has your doctor suggested a migraine diary to try and identify any triggers you may have? That would be an important step to take, here is that information; http://migraine.com/blog/keeping-migraine-diary-basics/.

      It’s important for anyone with migraine to have an accurate diagnosis as this will allow us to get the proper treatment and learn all we can about the particular migraine and/or headache we have. This link is has good information on doctor and diagnosis; http://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/.

      I understand you not wanting to jump into anything quickly. Seeing a neurologist at this point may not be enough and here’s why. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions. These conditions include multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache disorder specialists ARE experts in one area, migraine and headache disorders. They have extra board certification in headache medicine, take extra courses, attend conferences, and are current in headache medicine research and treatment. The thing is migraine/headache specialists are not always neurologists, and neurologists are not always migraine/headache specialists – even if they claim to be. Here is information I’d like to share with you in why these doctors are so special and then how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

      Do you currently have anything to take so you are able to abort an attack? This is one of the goals of a good migraine management plan. Abortive medications include triptans and ergotamines such as Imitrex, Axert, Maxalt and D.H.E. 45. I can share information with you on abortive medication in this article;http://migraine.com/blog/migraine-management-essential-5-abortive-treatment/.

      I’m going to stop now before I overwhelm you further!

  • #48836
    Profile Photo
    Lesley Lyle-Stenico
    Participant

    In May I will have my 5th round of Botox. I am in a 2 year Botox trial to show the insurance companies the long term benefits. I’ve had a mixed bag of results. First round didn’t help much. Second round help the most so far. Third round felt like someone hit me with a 2×4 for about a week then I was better…until the 4th round. OMG for 2 weeks I was down with the worst migraines ever. I even went in for 3 days of IV meds. I was good for a day then I got a rebound from He!!. I finally just stayed in bed for 5 days and didn’t move. I woke up one day and it was gone. That was episode lasted most of February, but I have only had to treat 2 headaches since. Will I get the fifth round…I think so. Over all my headaches are less frequent. I’ll let you know how it goes.

    Lesley

  • #48842
    Profile Photo
    ChoctawCharli
    Participant

    Lesley, Thank you for your update. I am going in for my fourth round in about four weeks.
    Like you, 1st round was almost a waste of time. All it did was get it in my system. Second round was delicious until the last three weeks before the third round was due. I described as a CRASH. I spent most of that time in bed. That is, when I was wasn’t going to the hospital for treatment! I had to have FIVE hospital treatments in those three weeks. Including one of my way home from the VA where I get my Botox treatment! I still spent about four more days of home treatment after the Botox, but it finally kicked in. I didn’t have to go back to the hospital until Mid March (then again this past Sunday). But even that is not bad compared to my usual March/April/Early May migraine reaction. So, I am waiting to see what the next couple of weeks will bring as the time for the next BX treatment draws nigh.
    My Headache Specialist was very concerned about my “Crash” and she and I are both praying and hoping it doesn’t happen again this time. Or at least get out of control like before.
    CharliAnn

  • #50290
    Profile Photo
    edealb@mail.com
    Participant

    Hi I am new to this but I have suffered migraines for as long as I can remember and I just did Botox for the first time 9 days ago and I have had a constant migraine since the treatment. Has anyone else suffered from this or just me?

    • #50305
      Profile Photo
      MelissaS
      Participant

      I did. My doctor even warned me to take an imitrex just before my appt. because the shots were likely to give me a migraine. That migraine lasted me four days. I had a single migraine-free day and then it was followed by another migraine that lasted three more days. You’re not alone, I can tell you that.

      I hope the shots work for you!!
      p.s. If you’re interested, I wrote a blog post about my first round of shots :P

      Melissa

    • #50308
      Profile Photo
      ChoctawCharli
      Participant

      My first time with botox, I showed little to no improvement in my migraine episodes. They were just as bad as ever! The second shot was much better, but DEFINITELY did not last the full three months. The third series oerformed as advertised. Only three tripsbto the hospital in the whole three months! Just had my forth series. Expecting good things. Give it time. My Dr told me to give it a years trial before we made the decision to proceed or stop. I think we will proceed. Still have the migraines. But, they are milder, and my at home mees usualky take care of them.

  • #55507
    Profile Photo
    Lynsilea
    Participant

    I had my first round of Botox a month ago for my migraines. This morning I woke up with sharp pains in the front on my head. Has anyone else experienced Botox wearing off after a month?

  • #56144
    Profile Photo
    silverkrystal1
    Participant

    After 39 years of migraines and somewhere between 22-28 migraine days per month I have completed the process and been approved for Botox. The question I have is has any one been on Botox since the initial approval and find that it no longer offers the relief it once did and is back to considering other alternatives. Thanks so much for any input you may have.

  • #56336
    Profile Photo
    sgirl
    Participant

    Just had my first round of botox 3 weeks ago. I was so hopeful but nothing, actually I think they have been more intense since. 31 units in my head, scalp, and neck. I am told it takes a few rounds. I hope they work soon.

    • #56340
      Profile Photo
      Lynsilea
      Participant

      I am about to get my second round on Nov. 3rd. The first round did nothing. You get really stiff. That’s the medicine. After about a month and a half it starts to wear off. I have done some MAJOR research and a ton of people have said the first round does nothing but it’s mainly just to get in your system. And to be honest the 3rd and 4th round is when it really hits you for the positive. I have had a migraine every second of every day for almost 2 years now with not one second of relief. Stay positive! It will happen!!

    • #56349
      Profile Photo
      monkeybrew
      Participant

      Hello to everyone following this thread!

      I have been working with a neurologist specializing in headache and migraine for a number of years now. She is about forty minutes from my home, which is extremely convenient. I must admit that she referred me to a specialty clinic in Ann Arbor Michigan (The Michigan Head Pain and Neurological Institute). For the most part I work with the team at MHNI (about 4 hour drive one-way). The exception is my Botox injections for chronic intractable migraine.

      My local neuro continues to administer these injections every three months. I believe I am up to the seventh round (received at the end of August). I had, prior to that round, begun to think that there was little impact to the migraines from the Botox injections. As I hit the end of the three-month “wait” period between Botox rounds I seemed to notice a definite increase in migraine intensity.

      For me, I opted to keep the appointment for the Botox round in late August. I am likely to keep the appointment for December as well unless something miraculous occurs between now and then. And, believe me, I am holding out for something miraculous. Honestly, it is more like holding out for a more effective, “impactive” treatment. Having recently left a two week-long inpatient head pain unit ran by MHNI in Chelsea I can honestly say that there are some nerve blocks that appear to interrupt my migraine process.

      The bottom line for me is that, like any treatment, one’s approach to Botox should be constantly evaluated and balanced through working with qualified, experienced, knowledgeable healthcare professionals as well as sharing experiences with friends, family and online communities like Migraine.com

      Please feel free to reach out with any questions or concerns.

      Take Care,
      MB

    • #56626
      Profile Photo
      ChoctawCharli
      Participant

      My first round did nothing either. My second round wore off after six weeks. My third round round, I was like oh? It’s time my for my fourth already? My fourth wore off a little early (but it was a very stormy time which is always bad for me). I just had my 5th. Give it time.

  • #49687
    Profile Photo
    MelissaS
    Participant

    Hi there!
    After deciding that botox was not for me, I took to the internet to find alternatives to it and found this forum! I can’t tell you how wonderful it is to find others like me.

    I went through two rounds of botox and after a lot of thinking and weighing of pros and cons, I’ve decided it’s not for me. :One: all the shots did for me was lesson the severity of the migraine, not eliminate any. At all. :Two: About three weeks after my first round I developed a rash on both of my legs. Spreading like wildfire, the rash is so horrible I just can’t take the scratching and bleeding anymore.

    I’m currently about two weeks past when I should have had my third round and am now starting to notice the affects of botox wearing off. And with that, the severity of my migraines seems to have doubled. For the past five days I’ve been a walking zombie, either crying because I’m so pissed off, or wishing for sleep to come so I can forget the agony in my head. But the pinpricks of pain that dance against my skull are so sharp I haven’t been able to fall asleep lately until way into the wee hours of the morning.

    Before starting botox, I averaged around 16-18 migraine days a month. While on botox nothing changed, except the severity of the pain.

    Does anyone here know of what happens after botox? What other treatments are suggested when it doesn’t work? I have an appointment with a headache specialist in about three weeks and I would like to have some things to ask him.

    At this point, I’m willing to try just about anything.

    Thank you all in advance for reading :)
    Melissa

  • #49693
    Profile Photo
    Kerrie Smyres
    Moderator

    Melissa,

    I’m so sorry you’re going through this, both having to give up something that provides some relief and that horrible-sounding rash. Can you tell us more about the rash? How long did it last after the first round of Botox? Did it come back after the second round? Do you still have it? If so, has it reduced in severity at all?

    I’m not sure what else you’ve tried, but here are preventive recommendations from the American Academy of Neurology. They are based on that are based on a review of many different studies: http://migraine.com/blog/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/. It is a great place to start with treatment.

    When you try a new treatment, keep in mind that even though meds are called “migraine preventives,” they don’t always change a person’s migraine frequency. Headache specialists say the goal of a preventive treatment is to reduce the frequency, severity and/or duration of attacks. It’s not unusual to only have a reduction in one of these areas and, depending on the degree of reduction, it is often considered a good outcome. Some people need multiple preventives, both because some are more effective in combination and also because one might reduce the severity of attacks while another reduces the frequency.

    Take care,
    Kerrie

  • #49696
    Profile Photo
    MelissaS
    Participant

    Hi, Kerrie

    Once the rash settled in, it stuck around. It is only now starting to slowly become less itchy and annoying. But my legs are still quite covered. At first, I thought nothing of it, thinking it was just an eczema flare. But when it didn’t go away with medication, I had to think of what had changed to cause such a rash. Toward the end of the second month I thought it might be the new prophylaxis I had started at the same time of getting the first round of botox. After talking to my dr, I stopped that particular drug and started another, hoping the rash would go away. But it didn’t. By the time I was ready for the second round of shots, the newest preventative was making me sleep all day, so it was out. I found out then that the dr didn’t have any other ideas as far as a new prophylaxis. When the rash still didn’t go away, and the only consistent thing was the botox; that made my decision for me.

    Having suffered migraines since I was about 11 or 12, I’ve been put on all sorts of medications in all sorts of combinations, and so far, sadly, none seem to work. In addition to the pharmaceutical meds, I take natural and OTC ones, too. Like Tylenol, aspirin and Aleve. Magnesium and flax seed, to valerian and fish oil. (yuck!) I’ve even tried massage therapy, which helped to ease the pain, but only after the fact. After looking over the link you posted above, I have tried almost all listed. I feel as if I’m at the end of available options. I do plan on asking about the cefaly headband. I just hope I’m a candidate and able to try it out.

    Thank you for such a quick reply!
    Melissa

  • #49798
    Profile Photo
    Kerrie Smyres
    Moderator

    Melissa,

    That sounds miserable! I’m so glad it’s letting up some. And I’m glad that you have an appointment with a headache specialist — they should have some more ideas for you.

    Botox is a brand name for onabotulinum toxin A, but it is sold under other names. I’m wondering if you could be reaction to an additive used in Botox rather than the toxin itself. Not sure if you’d want to risk it, but you could ask your doctor about other brands (Xeomin, Dysport and Siax are the other ones I know of) and if they are appropriate for migraine prevention.

    I just realized that the link I gave you only lists some of the meds in the American Academy of Neurology’s recommendations. You can print a journal article of the study to take to your doctor for other possibilities (http://www.neurology.org/content/78/17/1337.full.html). And here’s another article published at the same time that looks at non-pharmaceutical/alternative preventives (http://www.neurology.org/content/78/17/1346.full.html). And, since that was published, another study has found good support for candesartan for migraine prevention (http://migraine.com/blog/candesartan-preventives/).

    I know how frustrating it is to try treatment after treatment with little relief, but keep in mind that there are more than 100 possible migraine preventive drugs. This is both frustrating for the patient — to have to try so many different ones — and good — because there are so many possibilities. You may need to go off the beaten path, but there are still many treatment options for you. A headache specialist should be well-versed in these and able to help you figure out which one is a good fit for you.

    Please let us know how it goes with the specialist.

    Kerrie

You must be logged in to reply to this topic.

advertisement