It really works. I am on my 7th treatment of 31 epiderals to the skull but I swear that the results are worth the pain. I have suffered debilitating migrains since 2003 when I suffered a brain aneurysm. I had to be on pain meds for years only to take the edge off and still put me in bed in a dark room. Now I can ride my horse in the sun and deal with the headaches as they come.
I am SO glad that you’re having good results!!!!! As a horse person myself, I am very jealous that you’re getting the opportunity to enjoy yours, while I am relegated to looking at mine through my tinted house windows.
I am assuming that you are getting Botox, and as such, your injections aren’t epidural, but actually just into the muscles under the skin. Very tiny injections. If you’re getting all 31, it sounds like a good chance that you’re getting the right protocol that was FDA approved and seems to be most helpful for most patients.
It’s interesting that you talk about your seventh treatment too, because although specialists say that a full trial is at least 3 cycles, with time, specialists have noticed that patients are seeing cumulative results through the seventh and eighth cycles – something you have just proven, much to my (and I’m sure your) delight!!!!!
I have received decreased severity, but not frequency. Not yet anyway. I’ve had four cycles and am holding out much hope that by the time I get to eight or nine, I might see even more improvement. Right now I am still debilitated, but better. When you live like you and I have, even the tiniest improvement is worth following up with!
Congratulations on finding something that is helpful, and again thank you for sharing it with our audience!
My doctor was pressuring me to try Botox but my rhuematologist told me not to use it. The doctor and his PA recommended it every visit. I the lidocaine therapy and my rheumatologist ok’d that. Unfortunately it didnt work.
I was considering having it anyway. So I started reading the info ad in neurology now magazine. There were several other diseases and or disorders listed that indicated I should not use it.
The point I am trying to get to is, what if I hadnt read that info? Did my doctor not listen to me about my medical historty or even read my chart I could possibly be injured. I don’t want to scare but I do encourage people to trust that their doctors knows all there is to know. Research treatments before taking them. I was not seeing a run of the mill doctor but a very taleted neurologist who is a member of the headache society( cant recall the name of the headache foundation) i was driving 7 hours one way to see him. I guess the next time I see him I will ask him about it. Doctors have so much to remember that we have to research too.
I just read what I wrote, it came out kinda incoherent. I meant the doc reccomeneded the liocaine and I did it. And I also meant that even the best doctors dont know all there is to know about drug interactions, so we have to be co-active in our care. They have to see so many people a day we have to help them.
Sorry i didn’t get back to you sooner. My rheumy said that i am on a drug that makes me susceptible to illness so she didn’t want we to put a botulin in my system. The other contradictions I read about were not to use if you have a movement disorder or trouble swallowing. Since I have both those conditions, i figure its best not to tempt fate. My autoimmune is rare its mixed connective tissue disease.
Hi, I totally agree that it is important to be certain that you do not have any indications that would cause Botox to be dangerous for you. I am about to get my 3rd Botox course for migraines, and I have numerous medical conditions. So, I, too, have taken responsibility for doing my own research to check the safety of this treatment for my migraines even though I have some very talented, well-respected doctors whom I trust with my life! I am trilled to know that Botox has a cumulative effect because my 2nd treatment was no where near as effective as my first. I would give it a 75% effectiveness grade, whereas the first was 100%. The 2nd could easily be due to a total knee replacement and lots of narcotics in my system mucking up my brain chemistry. However, I’m praying this time will be better. Although I’m on Medicare with fabulous secondary RX insurance, my co-pay is $385 this time, and was $500 last time because I was in the gap. But what can you do? I’ve “lost” 12 days of the past 20 due to the severity of my migraines the past couple weeks. Ugh!
I too have several autoimune diseases (they do like to travel in packs, don’t they!)
There are a couple of things to be aware of re: Botox and our immune systems. Your rheumy is probably concerned because you are injecting a foreign substance into your body which can potentially cause an autoimmune flare. So many things can cause flares that you really need to know your body and be well educated about what causes flares for you. Additionally, what causes a flare once, may not again. And, something else to consider – how bad are your flares? It may come down to trying it because your Migraines are worse than the autoimmune issues. Thankfully, Botox wears off in 3 months, but my own experience is that a flare from the injections will last days to a week. For me this is well worth the benefits I receive. We know about the flares and I keep an eye out for them. You can also raise your DMRD’s before injection which can help with flares. Talk to your rheumy and get a second or third opinion. It’s well worth it in this case I think. If your rheumy isn’t aware of the seriousness of your Migraines (remember, a severe Migraine can stress your body enough to cause a flare too!) nor familiar with Botox itself, that he would *rather not* vs feel strongly about NOT doing it. Does that make sense???
There is also the possibility of becoming immune to Botox. This isn’t discussed much in the Migraine community yet, because usage of onabotulinumtoxinA is still fairly new I suspect. I also have dystonia, a condition for which Botox has been used for a long time. Your body can eventually become immune to the Botox. In these cases, there are other toxins similar to Botox that are given. One doctor I have talked with actually prefers Myobloc (like Botox, but not FDA approved for chronic Migraine, and I’m told, not likely to become approved due to the expense of seeking approval) and finds that it’s cheaper. All toxins can eventually trigger an immunity in the right person.
Hi, Cassaundra. I am so sorry you are fighting your own battle against this disease as hard as many of us are. Yes, it does get very expensive sometimes. You should see if you have one of those insurance policies that has an “Extra Help” provision . I know that Medicare & some private plans do for certain income-qualifying people. Also, it sounds to me like you are on some “duplicate” meds. I.e., if you’re taking all of those you listed at the same time – I don’t mean swallowing them all at once – but if they are all prescribed for you together, it would seem to me that you’re taking too many meds that shouldn’t be taken with one another. Check into that. The co-pays for Botox are high if you have health insurance, but you can call your insurance company to find out exactly how much. However you are likely to find it very worth it. My migraines are extremely difficult to treat, but with Botox, all I need is topiramate, (Topomax), with Maxalt on hand if I ever have a “break thru” migraine. ( however I’ve always suffered from chronic depression, so I take an SSRI, which helps migraine, too. Be sure to investigate your safety re: the combo of meds you’re on, and I’d be interested to know about that. Feel better!
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. I’ll let you know how it goes.
Didn’t see your msg. until today – why??? struggling with daily migraines, of course!!! and severely limiting computer time to business only! Since I’m on Medicare, Allegran won’t cover me with their Help program. But thx for posting the link. Hopefully others will see it. It’s pretty obvious on their ads – I hope others here will see it and take advantage of it. Botox is good even if it doesn’t give a migraineur 100% relief, like with me. ANY % of relief is gladly welcome! Thx again for the link! You’re a sweetie!
I have had Botox injections 6 times. They are the only treatment that helped my migraines. I had injections a month ago. I felt like I was dying!!!!! The last two days are better. My side effects this time to the Botox have been terrible..
The Botox changed where and how my head hurt. My neck and back are weak and ache. I had to use a heat pack several times a day. I’m nausea. Dizzy, light headed. My vision is blurry. My heart pounds when I try to do anything. My heart races. My head explodes with pressure and pain!! I’m hot I’m cold.
My headache did get better last week but the other symptoms were bad.
I don’t think I will ever get Botox again. I say that now , but in 3 months, if the migraines are daily again and at a pain level 4-9..who knows what I’ll do or if the doctors will allow me to get them after having these side effects.
At this time I don’t recommend Botox at all. My first 5 treatments I did push everyone to try them.
Its a tough decision. Daily pain causes us to weigh our battles with the treatments we try.
First of all, I am so sorry you have had such a horrid reaction to your Botox treatment this time around. How awful. I hope this isn’t a stupid question, but did you contact your Pain Management doc – or whomever administered the injections to tell her/him you’ve had this reaction? I get my injections from my Pain Management doc who helps with managing my migraines along with my neurologist, and he contacts me after my treatment to check on how I’m doing. His nurse does, anyway, and if I’m having problems, they call me back into the office. I haven’t had a “bad” reaction – just the treatment not working as well as it did the first time. I would think whatever doc you saw would treat you for these side effects. You shouldn’t have to manage these symptoms alone. In fact they might be dangerous. I would be worried that you may have some type of reaction to the toxin and should be under a physician’s care NOW. If you haven’t already, I would urge you to call right away. As for having the treatment again, I, too, am going to continue treatment with Botox even though I’m only having a 65%-75% relief from them that seems to last only 2 months or so. And my co-pay is very high, even though I have great insurance. I’m older, and I have fibromyalgia, and my nerves are so “good” at firing away in there after so many years of migraines, I’m extremely difficult to treat. I’m slowly building up to more and more aggressive med management dosages – being monitored very carefully; reading a lot myself to keep VERY informed – and am hoping I reach a dose that works – but will consider the surgery Ellen has written about if my insurance covers it eventually. Anyway, you sound like you are struggling mightily, if you’re on your 6th course of Botox. Please get help for these side effects and let us know how you’re doing! MEGA HUGS from another 4-9!!!
I’ve had four good days. 🙂 I talked to the nurse yesterday. She said she never heard of anyone having my symptoms. I hate to sound negative but that is what I was expecting her to say and this is why I don’t seek help often. She said that its possible that they are side effects but she just hasn’t ran across them. I know that there are others that have them because I google it and found out. I’ll go to my primary doctor and see what he thinks.
Thank you for writing.
I was concerned that you might be having a reaction to the toxin itself. Be sure your primary physician answers that specific question. I am quite concerned that your nurse hasn’t heard of those symptoms, too. I really. hesitate to question the qualifications of someone’s physician, but perhaps you should consider using another headache or pain management specialist next go-round??? Or tell mr to mind my eon business…
Thank you so much for your input. I’m so glad I have found a site where there are people that understand what I’m going through. It has been so hard for me to find a doctor that knows anything about migraines and how to treat them. I never heard of a pain management doctor until the last year. It wasn’t a doctor that told me about them. It was a friend.
I think I have tried almost everything out there. Botox has been the only treatment that has given any relief.
You may have more luck with a qualified headache specialist than a pain management doctor. Headache specialists tend to be the most knowledgeable doctors for using Botox for migraine prevention, so they will be most familiar with side effects and injection protocol.
I’m new here but wanted to chime in on what has been a really rough response to my first round of the 31 prescribed migraine injections. I had them on June 20th, 2014 and for one day I felt great. However since then I have a persistent, throbbing headache that starts up the back of my neck and then consumes my whole head. Before the treatment, I was getting about 15 headache/migraine days a month. Now I have had 11 in just 15 days. The pain has become excruciating, it’s accompanied by nausea, and I finally called the answering service at the doctor’s office where I had the procedure done. The doctor on call prescribed muscle relaxers for me, so we’ll see how that works. Given my results after this first round, I doubt I will go back for round two. This is really upsetting for me, as I had my hopes up that this would be a miracle cure after suffering for 30+ years with chronic migraine. Has anyone else had such a bad result in round 1, then gone on to have success in round 2?
I had the same problem the first time I got Botox. As hard as it is now, stick with it. After the 2nd round of injections, it got much better. And with the 3rd, I had optimal results. I’ve heard this from a lot of patients. Your reaction should get better in a couple of days- sometimes takes 2-3 weeks to get over the flu-like symptoms, but then you should get some relief. I know it’s hard to think about it, but I tell everyone you should give it at least 3 rounds before deciding it’s not for you.
I wish you the best!
Hi, my name is Debbie and I too am getting botox for my migraines. I amdue to get my 7th set, I started March 2013. My last set of injections was 4 weeks ago but they did not take andI have to go next week for more injections. I have found the botox great and it is the only treatment that has worked for me and I have suffered from severe migraine for about 10 years. I have been hospitalised many times for pain relief once for one month on iv drip to try to relieve pain. I am hoping that this was a once off for the injection to not work as I have started to hope that I was finally managing my migraine and it was not managing me. Ilivein Ireland and am treated by a neurologist. Has anybody else found this with botox.
I just talked about the “wearing off effect” of Botox with my Headache Specialist. I’ve been getting injections every 10 weeks for the past 3 years. My last round seemed to not help me at all. I usually get at least 4-6 weeks of lower intensity headaches, but this time I never got a break.
My doctor said that she’s seen this happen over the years. For an unknown reason, one cycle just doesn’t take hold. But she said, the next one might work just as well as before. I know that doesn’t help you any when the pain hits, but it’s nice to know that you are not alone in feeling like this is an issue.
She also mentioned that she had seen patients get Botox from other sources in between their scheduled injections with her. Increased frequency of Botox can lead to building up a tolerance and the potential for the drug not to work at all. I’m not sure how it is in Ireland, but in the US most insurance companies will only pay for injections every 10-12 weeks.
Are you getting nerve blocks in between your Botox injections? That shouldn’t mess with the efficacy of the Botox. It should actually help it to last longer.
Hi Debbie, I am glad Botox is working for you as it had very little help from all those shots. I am also new here, just joined earlier this week. I am not sure this forum sees a lot of input which is a shame since migraines are so horrible. Each of use need all the support we can get.
Hi Lisa, thanks so much for coming back to me. Are you not finding botox helpful. Do you live in Ireland or are you in the US. I know most of the names of the medications that are mentioned but some obviously are under different names in different countries. Botox seems overall to work for people and in Ireland you can only get it if you have been prescribed every other migraine (and other meds) and of course it is mainly private care but some of the public hospitals can offer it through the pain management dept. but it takes a long long time to get that far. As I said i have suffered severely for 10 years.. Debbie
Hi Debbie, no I did not find it helpful at all. I live in the US. I took the full 31 shots every 3 months for 9 months. I was keeping a migraine journal and there was very little difference in the number or severity of attacks. I have chronic migraines with episodes 21 out of 30 days a month.
Hi Debbie, I’m not sure I’m understanding correctly, but are you saying that Botox has worked before but isn’t working this time? Are you also on any preventive meds, like Topomax, for example? I had my 3rd course of Botox yesterday, and I take Topomax and Cymbalta (I also suffer from chronic depression & fibromyalgia). The 3 of these preventives work pretty well for me if we get the dosages right! We’re almost there. I take Maxalt as an abortive. I would hope your neurologist could help cut down those hospital admissions by prescribing some preventives in addition to Botox. Also, are you getting the full 31 injections at once when you get your Botox? I’ve never heard of going back for more Botox before 3 months. Luckily you can see your posts are coming through, and you don’t have to struggle with this alone!
Yep, we can see you! 😉 The thing to keep in mind here, is that many of us have a lot of time where we can’t get here due to our own Migraines, so patience is really important. We really do try hard to get here as often as we can, but sometimes it doesn’t happen every day.
Here are a few things to be aware of with Botox:
You can have an immune reaction to Botox that renders it useless. This can unfortunately happen at any time and can be gradual, or seem to just suddenly happen. Trying another cycle is important in case something else is going on. Discarding a potentially helpful med would be a terrible thing if it wasn’t necessary. There are other types of similar toxins that were designed for people who have this problem. My neuro/headache specialist is having luck with insurance covering these, so they are a potential option if things seem to be going downhill.
There is need to be careful regarding things like massaging the injection areas, using a heating pad, etc. Please discuss these with your specialist to be sure you’re not accidentally sabotaging your treatment.
There are two ways to do Botox for Migraine. One is to follow the 31 injection protocol, and the other is called “follow the pain”. This means that there may be some injections that don’t follow the exact protocol, and doing them where you feel the pain may be a way to help alter your response.
I hope this has been helpful. Please let us know how you’re doing…
Hello, I’m new, my name is Cassaundra and have come to terms that I indeed have this disease for over 20 years. My doctor has recently recommended Botox for me. I have been on so many meds and he wants to get me off of them. I currently take preventatives: Topiramate/amytriptyline, abortives: Zomig/Sumaval/Naratriptan.
What’s *insane* is that since the health care reform (which I’m not debating here), my insurance has had a significant change. Now my abortives are terribly expensive. What used to be $10-$30 every 3 months, now is $400 – $1400. You read that correctly.
So that said, I need to start considering Botox, yes, but I’m nervous about the cost. Additionally, I’m considering other alternatives including THC because I can’t even foot that cost.
Anyone else experience spikes in co-insurance costs? Thoughts?
Hi, Medicare Part B does not cover prescription meds, and Botox is a RX med. It is a Tier 5 med on my plan, which is ” the best” AARP supplemental insurance & RX plan available. I need to be on that one due to the number of conditions I have. So my co- pay fo Botox is several hundred dollars. I am having some benefit from it, and will continue to get more courses of treatments even tho the cost is difficult for me, but I am hoping I will see a cumulative effect, as suggested by some here. My migraines have proven to be extraordinarily difficult to treat.