Round Two: Migraine Diary

The second cycle of onabotulinumtoxinA (Botox) injections was fast and relatively easy.

Because I was scheduled to attend Headache on the Hill in Washington, DC we had to do my injections a week earlier than the protocol suggests.  We were worried about our insurance covering it, but there seemed to be no problems, which was a relief since struggling with insurance is such a battle these days.  Thank goodness for small miracles!

For more information on the Botox process, here is Part 1 of my Botox diary.

There were only a few changes from round one:

  • I didn’t have to go through and visit all the other treatment modality folks.  No psychology.  No nutrition.  No physical therapy.  I saw my wonderful doctor and was out the door in record time.
  • Pain. The first time I didn’t seem to notice the sting as much as round two.  This time the sting was sharper.  Clearer.  Even more like a bee or wasp sting.  I felt myself wanting to rub the spots more than the first cycle.  Still, the neuralgia is so much worse that this was really nothing to me.
  • My doctor was even more careful to avoid the muscles in my shoulder that got so weak with the first round of injections.
  • The injections in my forehead were slightly shifted to more evenly cover the area I tell people is about the size of a football field, lol.
  • I Migrained on the way home.  I don’t know if the injections triggered this, or if I was just due for another nasty one, but thankfully my meds worked reasonably well and I slept most of the way home.
  • I have had some super good days sprinkled among the icky ones – the last 5 days I have taken Flexeril for muscle spasms, but no daily indomethacin – awesome.  I’m not pain free, but managing my pain has not been as much of a challenge as it would have been a month ago. Is this the result of the Botox?  I really can’t say as it’s not been long enough yet to really know.  I’m just glad for any moments of relative peace in my life.

Some of what happened was exactly the same:

  • Although some of my facial neuralgias (shooting pain) had returned, it got much better after 2-3 weeks post injections again.
  • The coolness of the injections was soothing, and the sting was gone within moments after the injections.  The minimal response I get is still SO worth a couple seconds of the sting.
  • I did still feel muscle fatigue after the first week post-injection, although it wasn’t nearly as noticeable.  This again passed within about 2 weeks with no problems… now that I know just what to do to treat it.

At this point I am still happy with the therapy.  I do wish I was getting miraculous results like some of my online pals have, but I’ll take this little baby step and be happy that at least it’s headed in the right direction.  Sometimes it takes combinations of therapies to be really helpful for us enough to get back into life again.

We’ll keep searching for my answers, but for now, the Botox is helping me get through my days and that’s so very meaningful for me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (21)
  • Bonnie Troop
    6 years ago

    I have chronic daily migraines and tried Botox injections. Unfortunately I had a horrible reaction that included anxiety more intense than I ever felt in my life. It also produced such a severe depression it felt like all the serotonin had left my brain. The doctor’s office said no one had had that reaction. However, some of the nurses trying to help me at the hospital offered to see what they could find on the internet and they found lots of people like me. I think it’s interesting that this side effect is not mentioned. My migraines stopped for about a month and a half but having such an altered state of mind was not worth it for me. I really hope that no one else experiences this, but I tell this so that if someone else experiences high anxiety and the doctor tells you that’s not a side effect of Botox just ask him to look it up on the internet. I filed a report with the FDA on this hoping that if enough reports come in perhaps they’ll list anxiety as a possible side effect that so people will be prepared, rather than being scared. I am so glad that this works for some people, anything that helps a migraine is a God-send, but the side effects must be weighed.

  • Ellen Schnakenberg author
    6 years ago

    Bonnie, filing with the FDA was the perfect thing to do.

    As a dystonia patient as well (this is one of the primary uses for these toxins) I have never heard of that side effect and am not sure how it would occur. However, reporting it was the thing to do so someone can look into it and maybe figure it out.

    I am wondering however, since that first experience, especially in light of your success, did you consider pre-treating the anxiety to see if you could minimize it to the point that you can still find relief from your Migraines?

  • Sonya
    6 years ago

    The first time I had Botox there was no benefit and no side effects. It was a couple years before I had it again because we moved across the country! When I had it the second time it was a headache specialist who was experienced with administering the Botox. There was the minor discomfort during the “sticks” and then I was fine. Drove myself home, a 45 minute drive. But 3 days later I had a horrible headache in the back of my neck. I have never had headaches there. (I’ve had migraines for 27 years)I didn’t know what to do for the headache because it was not a migraine, I didn’t know what it was but it sent me to bed. In the following days the other side effects began to take place. I couldn’t raise my eyebrows (so what?)I couldn’t open my mouth very wide. I could hardly chew. It was extremely difficult to swallow. One side of my head felt numb..yet I could still feel the migraines. In a nutshell I felt as though I had had a stroke!! My Dr. was astonished at all these side effects. He said next time we would avoid the jaw area since those injections caused most of my side effects. I thought I would never be the same again. It took 4 months for everything to get back to normal. The Dr. said he would not give it to me again. I would not have let him anyway!! After a while he “fired” me because he had nothing else to offer me. He referred me to another “older and wiser” specialist more than an hour away. That Dr. tried trigger point injections which I had never had and I had no benefit, no side effects. He tried several medications that I had not yet been on in all my years of being drugged. None have worked. He suggested the nuero-stimulator. My insurance won’t approve it. On my last visit to my Dr. he said “Why don’t you just come in on an ‘as needed’ basis because there is nothing else I can do for you anyway.” I cannot count the number of Dr.s that have given up on me. I have no idea where to turn now.
    As far as the Botox I think it was just me…my body or my medications mixed with the Botox or some freak accident like the couple already mentioned. I don’t want to scare anyone away from it if it helps so many people. But I guess you have to look at it from all angles.

  • Ellen Schnakenberg author
    6 years ago

    Sonya, I am so sorry. I know doctors who would never, ever give up on a patient. Not all doctors are going to be a good match for each patient. I would encourage you to try to find a doctor who is more dedicated than those you have had so far. ((Hugs))

  • Bonnie Troop
    6 years ago

    I get migraines in my neck plus the neck when it’s out of alignment is a trigger spot. The migraines have a path of pain that starts from the front of my forehead to the base of my skull, down to the neck and at times straight on down through the shoulder and down parallel to the upper spine. I am sorry you had such a bad reaction to the Botox, they do list that as a side effect, which I was scared of. But I got a different side effect that I wrote about here. Good luck to you on your quest to end migraine pain.

  • lynnj55
    6 years ago

    I’m so happy to read about all the people who have benefitted from the Botox injections for migraines! I wish I had a better result to report, but they didn’t work for me. I had injections around my forehead and farther back on my head, and around my neck. I have neck pain anyway, and the Botox made it so I could hardly hold my head up. My migraines actually increased to include overall facial and severe neck pain that I’ve struggled with daily for six months since the injections. My neurologist treated me with pain killers and several other meds, but now she is concerned that I have nerve damage from the injections.

    A few days ago she put me on Gapapentin (Neurontin), an anti-seizure medication, and for the first time in 6 months I can actually move my neck. And I’ve some of the best night’s sleep in many, many months. I’m almost off the Percoset and morphine, thank God, and can now touch my forehead and raise my eyebrows without feeling as much pain. I’m hoping the Gabapentin works, even with the side effects, otherwise I’ll be shopping around for a new doctor, because this one has run out of ideas to treat my chronic daily migraine.

    I hope my experience hasn’t discouraged others from giving Botox a try. In its defense, I have unexplained and unanticipated reactions to many drugs and this could be another one of those cases.

  • Ellen Schnakenberg author
    6 years ago

    lynnj55 – Congratulations on finding something helpful. The whole idea of “cookbook medicine” is really not helpful to anyone. Migraine is multi-factorial and what works for one person will fail another. The problem is that we won’t know what will be helpful until we try it. And, that can take some guts.

    Hang in there, and do let us know how you’re doing.

  • taralane
    6 years ago

    Hi Ellen –
    Glad to see all the responses to your blog updates about Botox. My first set of injections was only 100 units instead of the 154 units specified by the Botox protocol for migraine and I know I did not get 31 pricks – perhaps 20 no more. My neurologist deals with headaches and Parkinson’s in my HMO and I am currently trying to get approval for a second opinion since although he is good, he is not truly a migraine specialist. He is a neurologist with migraines and so has experience with headaches, but not a specialist. My first experience started with a 96 hour migraine that I finally got rid of with Migrainal which I had to pay for out-of-pocket to the tune of $546. I am due for my second round which this neurologist has totally left up to me, but I have doubts about it. I had another pain specialist to whom I was referred through the same HMO ask me if the neurologist hit the right spots – something which I would not know. I am going to get the protocol directly from the mfr. and continue to think about the second series. Very little meds work on me now – at present I am without any preventatives or acute rescue meds, and since I have a migraine/headache every day this is worrying. I feel like I am at the helm of my own ship, with no one giving me any navigation information. The last 3 months have been the worst 3 months I’ve had during the year. My migraines have been stronger, lasted longer and been more debilitating. I am very skeptical that Botox is a good way to go. One migraine specialist is thinking about infusions, but I don’t know much about them, and another pain doc thinks I should do the trial neuro-transmitter implants. I’m in research mode – so if you have any info or places to look it would be a great help. Thanks.

  • Chris Hicks
    6 years ago

    I just had my second round of Botox for chronic migraine on May 14th. My first round was in February of this year.

    What I have noticed so far is that about three weeks out from the first round I started seeing some improvements. By a month out I was seeing just about a 50% reduction in intensity and frequency. When you start out with litteraly a migraine every day this is a great improvement but still far from where I would like to be!

    I am two weeks and a couple of days out from round two and I have yet to see any improvement. Things are pretty bad right now. I am struggling with frequent and intense migraines. I am extremely hopeful that I will begin to see relief here in the week!

    As for side effects, I have noticed anything significant. The worst of it for me is a lack of movement in my brow. I notice that my eyebrows simply do not move very much as the Botox begins to take hold. This is obviously a very minor thing in exchange for decreased migraine.

    The injections themselves are not too bad. There were a few of the 30 or so that I felt a bit more. Walking out of my neurologist’s office I really did not feel any discomfort.

    I suppose the most frustrating thing in all of this is the lack of understanding and therefore the lack of treating the cause rather than the symptom.

    Aside from the Botox I am happy to say I am only on a couple of preventative medications. I cannot say much about their effectiveness, but at least I am not constantly dosed up on a bunch of meds. A couple of years ago I was on very high doses of multiple medications. I refer to this time as my Zombie Years. I had a healthcare professional comment on not seeing anyone on such high doses of so many medications. I have “divorced” that neurologist and now see someone who is much better (and less prone to over prescribing medications).

    All in all, the Botox has been positive so far.

    I just wish there was something more, something more effective.

    Take care.

  • Ellen Schnakenberg author
    6 years ago

    I am personally praying for a cure!

  • migraine mistress
    6 years ago

    Ur lucky ur neurologist is accommodating. Mine will NOT give me the shots before 90 days. Even last fall, I was traveling to Tokyo to visit my son working there…chance of a lifetime & he wldn’t do it a wk early. I was feeling sick the whole way thru my 11 day trip, even throwing up while out pushing myself thru events. Been doing Botox for abt a yr. & 1/2 & particularly, this past cycle, got no relief at all.

  • Ellen Schnakenberg author
    6 years ago

    migraine-mistress – Oh I am so sorry to hear about that. A good doctor is worth their weight in gold… and then some. Have you tried asking your doctor why he/she will not help you out about this situation?

  • barb
    6 years ago

    I really want to get these injections but need to find a doctor to do them, even if it’s a two hour drive away. I’m glad that most people I’ve talked to say they really help.

  • Nola
    6 years ago

    I had my last round of Botox on Monday. I’ve been getting the treatments every three months for two years. At first, they dramatically reduced the frequency of my chronic migraine – by about half! Gradually, however, the efficacy has diminished to the point now where it is basically worthless for me to continue. My neurologist told me during my visit that since we already had the medicine we may as well do one last treatment. I was already having a migraine – NOT a good time to have that many injections. I was so hypersensitive, that the ouchies were quite noticeable. I have a massage scheduled for this evening and my doctor is admitting me to the hospital for I.V. therapy this weekend.

  • Ellen Schnakenberg author
    6 years ago

    nola – I would highly suggest that you not only get to see a headache and Migraine specialist who has additional training in dealing with these difficult situations, but that you don’t give up. The fact it helped for a while is an important clue to where you should be looking next. Did you know that some patients can actually develop antibodies, and that there are other similar toxins available to some patients?

  • migraine mistress
    6 years ago

    Would u share w/ me what the IV therapy in the hospital is like?

  • Ellen Schnakenberg author
    6 years ago

    migraine-mistress – There are several different types of IV therapy that can be given in the hospital. Which one might apply to you needs to be a decision made between you and your specialist team. Have you ever had a discussion with your specialist about IV therapy?

  • casrak
    6 years ago

    I was going to try Botox a few weeks ago. I went in, had the medical safetly brief and decided i would give it a go. I have been suffering for sooo long now, I was willing to try anything. Unfortunatley I was unable to complete the process. 2 shots in and I about came out of my skin because of the pain I was feeling before the proceedure. The 2 shots above my left eye just made the pain that more excruciating. I had to stop the session and was told I could possibly revisit this at a later date. Well, after what I went through I don’t think i will. I am so happy for those that can tolerate the session, unfortunately I am not one of those people. What makes it even worse, I do have a rather high pain threshold, but this was just too much.

  • Paintchip
    6 years ago

    Casrak, I just want to share with you a similar experience I had. First let me tell you that I’ve been getting Botox treatments for about 4 years now. For the last three years the procedure has been done by my current neurologist (who was trained by my much loved previous neurologist). I have a great deal of comfort with the level of care I receive.

    We always apply ice to numb the injection sites before hand. My doctor happens to start my shots in the front. This is per my request as I prefer to get the more sesative ones out of the way first. She tells me I’m the only one of her patients with that prefernce. LOL.

    I have a high pain threshold, but still have a bit of anxiety whenever I go in for the shots. This anxiousness is directly related to me hating needles, and I dread the rebound headache I almost always experience the day of my shots. By the way, we have found that a hip-injection of Toridol on my way out the door has proven to lesson the severity of that bad-boy down to about a “pain level 3” migraine headache -which I can mange quite easily.

    Now here’s the point I really wanted to share (sorry it took me a bit to get here)….
    About a year ago my doctor started the procedure as she always does. But with the first injection I felt a severe difference. It caught me (and her) completely off guard. I grabbed the sides of the table, let out a tribal scream, and I think there was a cus word in there too. After a taking a moment to recompose myself I let her know it felt like she just injected me with fire. The pain was short lived lasting probably less than a minute. And it wasnt the needle placement that caused the pain, as it didn’t start until the solution was going in. I had never felt anything like that before….. Nor since. Thankfully!

    Is this similar to what you felt?

    My surprised doctor took some time to ponder the situation and finally said the only thing she could think would cause that is if the solution (that’s mixed with the BOTOX) had been a “bad batch”. She (and I) checked the expiration date on it, and it was fine. Now I will also tell you that I bring my own Botox to the appointment, because I can get it at no-cost from the MTF pharmacy. Admittedly I’ve had a couple of “issues” with them in the past. She didn’t think this was related to the Botox.

    So after a brief consultation on my options, I opted to press forward with the procedure. We did a re-icing session to numb me again and she mixed up a new batch. I braced myself and we went for round two. I am very happy to report that the rest of the shots were accomplished without a hitch. Everything went exactly as it had during past visits. Very minimal discomfort, even with the extra nervousness I had at that point. I’m also glad to report that I had no lingering side affects in the hours, days, or weeks following!

    Surprisingly, my insurance picked up the cost of second Botox.

    I can tell you this – if that “bad fiery shot” had been the first one I had ever experienced, I probably would be very leery of ever trying it again. But since I had had so many positive experiences before that one and with the same doctor – I trusted her to complete the procedure with the changes made (ie additional numbing and a new batch of Botox/solution).

    I think my unusual experience might help show that even with an experienced practitioner, sometimes things may go a bit off kilter. It’s my experience and understanding that (generally speaking) this procedure does cause a minimal amount of discomfort in the needle stick; maybe a bit of residual tenderness in the injection areas; and possibly a rebound headache. Other than those few side affects, most people won’t experience much discomfort at the time of the procedure when it is performed correctly. For me, the long term benefits I gain are well worth these small side affects.

    Of course every patient is different as are our health conditions, pain tolerance, and treatment options!

    I totally agree with Ellen that it is important to find an experienced doctor to perform the procedure, and work with them to determine ways to lesson any fear or pain that may accompany the event.

    If you are still open to the possibility of this treatment providing you with benefits, I would encourage you to not give up on it just yet. And I also encourage you to seek out another provider, and work with them closely to determine any possible reasons for the reaction you experienced. I think it may have been unusual and worthy of additional research/consideration. If you are a chronic migrainuer, Botox may still be a viable option for you.

    I send healing thoughts your way and hope you have a pain-free day!
    Cindy/PaintChip

  • casrak
    6 years ago

    Thanks for the reply Ellen. I’m sure most doctors to start elsewhere. I have to go through the VA and it was a RN that does the procedure for them. She has done numerous ones and I had to be the first one to not be able to do it. After 2 years of my migraines getting worse, I was finally seen by a nuerologist through the VA and as of a few weeks ago I was seen by a headache specialist that was recently hired.

  • Ellen Schnakenberg author
    6 years ago

    casrak – Oh I do hate to hear this. I hope you get a chance to go back through the rest of the diary because it talks about these issues.

    First off, Most doctors will start at the back of the head which tends to be less painful. By working forward, it gives the patient a little time to get used to the feel.

    Secondly, it is okay to use ice or even lidocaine gel to put on the injection sites to ease the pain.

    Thirdly, I would check with your doctor to be sure they’re using the smallest needles possible (at least 23 gauge or smaller).

    It can also be helpful to pre-medicate with a hefty dose of diazepam or another drug that will help to sedate you through the process. It’s possible that you have allodynia and that made the process even more painful, as it normally should not be that severe. Allodynia makes EVERYTHING hurt though. You can read more about it here: https://migraine.com/blog/migraine-allodynia-and-central-sensitization/

    Lastly, please be sure you are seeing a Migraine and headache specialist. *Operator error* is easy to have happen when a doctor gets the angle of the needle wrong, or simply mis-judges where they think it should go. Someone who does these all day long every day is going to be much less likely to create this kind of problem.

    Good luck. I hope you do get the chance to try it again sometime. It is not a cure, and it doesn’t work for everybody. But if you’re like me, any tiny little bit of relief is worth it.

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