Botox for Chronic Migraine : My Diary Introduction

Last Monday I experienced two new things: A new Migraine and headache specialist I adore, and a new treatment for my chronic Migraines… Botox injections.

Many patients are discovering that this injection treatment might be an option for them, yet might experience some fear or curiosity about what the Botox experience is like. Not everyone has the option of taking a physician’s workshop on Botox and nerve block injections as I was able to experience, so I decided to keep a diary here on Migraine.com where I’ll tell about my personal experience as it happens, and to share information from a personal perspective about Botox as a therapy.

The Story

I have been chronic since the mid-1990’s with precious few days break in my pain since it all began. My transformation from episodic Migraine to chronic Migraine came courtesy of an autoimmune disease that made it necessary to treat an overactive thyroid. Treatment for my condition changed my metabolism irrevocably, leaving me struggling with not only a permanent thyroid problem, but also chronic Migraine attacks and other health issues.

Several years ago, a headache specialist who was involved in onabotulinumtoxinA (Botox) research had seen me three times and then given up on me, telling me the only future he saw for me was the injection therapy I could not hope to afford. I was devastated. Unwilling to uproot my family who was already feeling the pressures of a chronically ill mom, then sell my home for a procedure that was not FDA approved or would even be guaranteed to help me, I began the long wait for approval and adoption as a treatment by my insurance company. All the while I prayed through every attack for aaaall the pieces of the puzzle to fall together so I could at least try the procedure that might finally help me.

I was thrilled when the FDA approved onabotulinumtoxinA for chronic Migraine, and began to plot and plan my attack on the beastie in my head.

Unfortunately, it was a long time before our insurance added onabotulinumtoxinA to the formulary, making it a treatment that was available to me. Additionally, my new and improved headache specialist changed specialties and moved elsewhere. I was up a creek without a paddle.

When we learned of the formulary change, I immediately contacted a new doctor *nearby* whom I had been told would be a wonderful fit for me. An appointment was arranged at her office about seven and a half hours drive away, and the wait began.

The Visit

Before my visit, I received paperwork typical of a new patient visit to most any headache clinic. The information they asked was both generalized about my medical history and that of my family, as well as more specific information about my Migraine and headaches.

My new Migraine clinic

My new Migraine clinic

At the appointed time, hubs and I appeared at her office. It had subdued incandescent lighting, all on dimmers – just right for my head. We met with her and discussed my history and the treatments I had already tried. Because I had been a Migraineur for so long, there weren’t many treatments I had not yet attempted. Botox seemed like a logical fit, and although she expected me to take some time and contemplate the injections, I had already had a very long time to think about them, and a workshop to teach me the ins and outs as well as pros and cons of the procedure to answer my most of my queries.

I had only one question for my new Migraine specialist regarding the injections before we got started: I was most concerned with my pain getting worse. Most patients with pain as a side effect after onabotulinumtoxinA injections suffered weakness in their necks that Botox exacerbated. Because I have a weak neck due to cervical injuries and other assorted problems, was there anything we could do to try to prevent the possibility of painful side effects due to fatigue from other muscles overworking and causing pain?

I liked her answer, and my journey began…

Next – The Injection Process

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 (17)
  • Stace31601
    4 years ago

    I have had my 2nd “session” now and I am having relief. Not sure how much yet…. Still nervous to get my hopes up too much

  • Cindi
    6 years ago

    I love a cliff hanger…!! Thanks for this Ellen. Not only am I a few weeks behind you, but I love the discussion it generates!

  • Ellen Schnakenberg author
    6 years ago

    Cindi – I would love to know how you’re doing as you go along too. Feel free to add comments about your experience as we go forward! ((Hugs!))

  • jo17151
    6 years ago

    Ellen, I look forward to reading this series. I also have Lupus and in May 2010 the chronic migraines began. After trying many different medications, life style changes, complementary treatments without any relief, I finally found my way to a Neurologist I just love who recommended Botox. I just had my 3rd treatment at the beginning of January.

    It’s made a huge difference to the migraines. Unbelievable as a matter of fact. However, there is a “but”. . . having my neck muscles frozen was a tipping point for me and a number of other problems with muscles surfaced.

    On the plus side, I’ve found a wonderful physio therapist who put together all the pieces of quirkly little odd symptoms that completely explain the severity of “bobble head” I experience after injections. My neurologist was pretty impressed with her findings.

    So I’m really looking forward to hearing your experiences with fatigue from other muscles being over worked (a big part of my problem. . .and certainly having Lupus doesn’t make it any easier). I hope you’ve found a solution for relief.

  • Ellen Schnakenberg author
    6 years ago

    jo17151 – Thank you so much for telling us about that! I was afraid that might happen to me as well. I am flaring now, however it has been a few weeks since my injections, so tend to think it is something else that has likely triggered this ickiness. Immunizations tend to be a trigger for autoimmune flares for me. I am keeping fingers crossed that it won’t be a problem for me. If it is, you’ll see me writing about it, lol!

  • jo17151
    6 years ago

    Ellen, the Lupus flare was the very next day. I woke up and could barely move. Even walking hurt – I could feel the vibration from my foot touching the ground run up my body to the top of my aching head. I hadn’t had Lupus symptoms that bad since 2008-ish. (first Botox injections were July 2012). The injections sites were so sore (particularly on the back of the head and temples) that even laying down wasn’t comfortable. The fatigue for the first couple of days was also severe.

    I forced myself to get up and out for a couple of short walks – but they were very short and it wasn’t easy.

    In injections were on a Thursday and by Monday, I was clearly on the mend and didn’t need intervention from the rheumatologist for the flare.

    Second set of injections were in October 2012 and the Lupus reaction definitely not that bad. More tired than anything, but not the systemic body pain like the first time.

    Third set was Jan 3/13 and there was a bit of fatigue for a few days – but I’d call it a couple of sleep Lupus days rather than an actual flare.

  • Ellen Schnakenberg author
    6 years ago

    jo17151 – May I ask… How quickly did you notice a flare happening after the injections?

  • jo17151
    6 years ago

    (hope this shows up properly).
    After my first set of injections I had a few bad Lupus days. Actually the first 2 days were really really bad (Lupus wise).

    It wasn’t as bad after the second set and by the third time I think my immune system was thinking “ho hum, Botox again, no biggie” and didn’t kick off in to over drive.

  • Ellen Schnakenberg author
    6 years ago

    I know it might sound strange, but I love that you commented, and that we have so much in common – including the autoimmune/lupus diagnosis to contend with. I worried about that aspect because my immune system is already a problem, and adding onabotulinumtoxinA I feared might complicate things further. So far that hasn’t been my experience, but I am keeping fingers crossed.

  • davidgarrison
    6 years ago

    I hope you have better luck than me. I tried it 3 times at Headache Institute at Texas Neurology (Dallas). Yeah you neck is little stiff for a week, but it went away fast. I didn’t notice any change. I have have suffered for over 10 years with migraines, and almost everyday for past 3 years. I have tried all meds out there, and only thing helping so far was reading a book called “heal your headache”. With special diet in book i still have one almost everyday but there so minor, i can take butalbital-Caffine to get rid of it. No more tripians or hospital visits. Hope it helps, I know everyone if different.

  • Ellen Schnakenberg author
    6 years ago

    Hi David – I’m glad you’ve found something that helps you! You’re right, the method in the book you mention is helpful for some patients, but I wish it was helpful for us all.

  • sonjamohr
    6 years ago

    Looking forward to reading about your experience. After I see that, then I’d like to share mine. Look what we will endure to prevent migraines!!

  • Ellen Schnakenberg author
    6 years ago

    sonjamohr – I actually consider these injections to be one of the lesser things I have been reduced to trying. I’ve had some serious reactions to other medicines/preventives that make a Botox injection look like a day at the beach. I’m looking forward to seeing your experience too!!! I think these help others who are nervous about the process. Knowledge is power!

  • Camper Jen - Paincamp.com
    6 years ago

    I’m curious to know what her answer was re: the possibility of increased pain in the neck? I was referred for Botox injections and that is when I decided to seek Complementary and Alternative Medicine options. I never went through with the Botox for many reasons and the added pain was one of them (I have herniated discs in my neck and TOS and arthritis there etc etc). I’m looking forward to hearing how your journey has been! Thanks for sharing! 🙂

  • Ellen Schnakenberg author
    6 years ago

    valeriefago – I’m glad to hear you’re getting some results from the injections. I know the protocol says every three months, but I really wish this could be done on a case by case basis, as we all metabolize medicines slightly differently. What works for one may not be ideal for another.

  • valeriefago
    6 years ago

    I have been getting Botox injections for over a year now. Increased neck pain and weakness was a side effect that I haven’t heard of until now. I haven’t had any issues with either but then again, I have no other problems with neck or spine. The results have been beneficial to a degree. I get the injections every 3 months and the first 2 months afterwards are good ones. The closer I get to needing my next round, the worse the migraines become. I also do much better in the warmer months. This winter (and many others) I have been admitted to the hospital for the migraines. I’m not sure what it is about this winter but I have had a migraine daily since the beginning of October. What alternative therapies do you use for treatment? I use chiropractic therapy as well. I do believe my next step is seeking treatment at John Hopkins in MD.

  • Ellen Schnakenberg author
    6 years ago

    Hang in there with me – I’ll explain it in the very next post in the series! 😀

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