Botox and the Superstitions of Chronic Illness

I’m scheduled for Botox injections this afternoon. I’ve spent the last couple weeks considering canceling the appointment.

My hesitation was fueled by superstition — I’ve felt pretty good the last six weeks and I’m afraid to do anything that might mess it up. Just like the baseball player with an elaborate ritual at the plate, I’m grasping to an illusion of control.

Initially I was worried that the injections themselves would trigger a migraine, which happened the last two times I tried Botox. Within an hour of the injections, I had the worst migraine I’d ever had to that point. I don’t recall how long they lasted, probably just a day or two, but I remember the pain clearly. After those initial migraines,the Botox did not appear to have any impact, positive or negative.That was eight years ago, though, and my doctor now uses more of the drug and more injection sites. This new protocol is what convinced me to try again.

My conviction wavered after I discovered that the _proof of Botox’s efficacy for chronic migraine is pretty weak. In the two studies that Allergan, the maker of Botox, submitted to the FDA, the results are less than stellar. Over a six month period, the participants who received Botox averaged 7.8 and 9.2 fewer days of migraine than before the injections. Participants who had a placebo injection reported 6.4 and 6.9 fewer migraine days. There’s not much difference between the actual drug and the placebo. The numbers are an average — some patients have no reduction in migraine days while others experience a significant reduction.

Lack of evidence supporting a treatment isn’t usually enough to keep me away. I’ve drunk scorpion tea, after all. I’m willing to try any treatment unless it is likely to harm me and the risks of Botox for chronic migraine are very slight. The primary side effects are headache and neck pain, but there’s also a chance it will relieve the neck pain I already have.

I was hoping to find clear information that would make my decision obvious. I did not find a resounding endorsement in the research, though plenty of people on forums and who read this blog say that Botox brought a miraculous improvement.

In any case, when I awoke at 5 a.m. today with a migraine and realized it was my sixth migraine in six days, my decision was made. I’ll get the Botox injections. In the last six weeks I have felt better than I was before, but the migraines are still chronic. The Botox could push me into a slump where the migraines worsen again, but I might hit it out of the park. I’ll never know unless I try.

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 (44)
  • Ami
    5 years ago

    Are your migraines usually around your period time? My worst and longest ones are and always have been. I also get them from triggers such as certain alcoholic drinks and use to be just about any stress but now that I have been on Xanax for the past few years only high stresses. My migraines almost always start out with not only a slight pain on one side of the back of my head and out that same side eyeball AND I feel like I have a “kink” in my neck. The “kink” then seems to pull on all muscles around it and they pull on the muscles around them. This has for 20 years sent me to chiropractors, acupuncturists, masseuses …..you name it. After my medicine (Imitrex) has kicked in later on all the muscle stuff goes away by around 95% so I don’t think the muscles are the issue as far as triggering the migraines but obviously like many Im not sure. I was told I am “Estrogen dominate”. I like most of us am just trying to after 20+ years and enough money spent and lost to total the price of a Bentley by now Im sure not to mention basically a life still not lived. My neck stuff is so bad I am hoping Botox might work for me but the fact that the muscle stuff happens along with or right after a migraine starts makes me think it’s not the muscles but perhaps a hormonal thing. I just don’t know. Any feedback would be wonderful. Thank you so much and I hope you and all of us find relief by finding a way to fix the cause and not the effects (as I would like to have a liver and not have a stroke by the time Im 55) 🙂

  • kermi
    5 years ago

    I just wanted to let you know that I had a pain specialst (well his PA) perform trigger point injections on my neck to see if they would help. Once I got past the initial 3 days of neck pain and cramping my migraines have reduced exponentially. Now I am allergic to iodine so I do not know what they used, but the PA said that botox was a crock and didn’t work. If botox works for you great, but if you want a less expensive version the trigger point injections into the muscles of the neck that get tight work great for me. I highly suggest it. I also do injections of sumatriptan and Ketorlac (toradol) myself with onset. If you can find a doctor that trusts you to inject into your hip, toradol is my wonder drug.

    Another oldie but goodie is Methergine (Rx is Methylergonovine.) This was used in the 80’s and 90’s for migraine, but is primarily used for women with bleeding issues during birth. This drug has to be monitored and you cannot use it with triptans and a few others. IF you cannot afford the triptans, this is a good alternative and its cheap because it has been out forever. It is on the $10 tier of my insurance. I wish you all well.

  • Michelle Ann
    7 years ago

    I had my first Botox treatment October 14…though my headaches didn’t magically vanish, I have seen some progress. Instead of my usual 4- 7 day headache, it’s just 1-2 days and to me that’s a huge deal. I wasted my summer and savings because of brutal migraines causing mt to miss out on work & family.

  • Lisa Jurcich Kovach
    7 years ago

    When I first started my botox, It didn’t help me until about 3 weeks later, I was very confused as I thought it would work faster. The secound round I have only had 1 attack. But I have been taken off my topomax this last round(#3) and My pain has come back a bit, but not as intense. I also found that having a live tree triggers them. I will get an artifical one after the season is over when they are on sale. LOL

  • Sydney Cole
    7 years ago

    Best of luck to you, Kerrie, I hope that it makes some difference for you!

  • Michele Ott
    7 years ago

    Its worth a try. Just be aware there is a chance of side effects, and it takes 3 or more to wear off. I’m one of the smaller percentage that gets a chronic daily headache from botox, it felt like a bowling ball was sitting on my forehead 24 hours a day. On the flip side, during the 3 months my migraines were much better, and I got no tension headaches at all. Its all about perspective, and I’d rather take the chance that it might help. I find that dealing with chronic migraine, I’m my own worst enemy. Its difficult to keep the depression, frustration and anger at bay. Best of luck to you, I hope today this is the treatment that works!

  • kermi
    5 years ago

    try trigger point injections instead of botox.

  • Melissa Crowe Johnson
    7 years ago

    I am scheduled for Botox in mid January, already tried the occipital nerve block, helped some but didn’t last long. I really hope the injections help, I am so tired of being stuck in bed with my head killing me!

  • Patty Forrest
    7 years ago

    I was just approved for Botox by my insurance company and my migraine specialist, but after reading some of these post……………..I think I might wait. I don’t think I can handle the chance the migraines could get worse.

  • Louise M. Houle
    7 years ago

    I take an abortive med just before the treatment so that it does not trigger a migraine. The treatments do not reduce frequency of daily migraines, but they DO help reduce my face/neck/shoulder muscular pain – which is something. It’s worth it for me.

  • Deborah Easterling
    7 years ago

    Is Botox administered differently for migraines – different location, different amount? Where are the injections given?

  • Migraine.com
    7 years ago

    Deborah-you can learn more about Botox here:http://migraine.com/migraine-treatment/botox-for-migraine/

  • Cherri Johnson Milligan
    7 years ago

    I have been getting Botox for several years after suffering for 20 years, I have found relief not a cure. they have really helped me get my life back and my insurance pays for them.

  • Lisa Jurcich Kovach
    7 years ago

    Its been 9 months for me, and I’m doing well, except smell is a big trigger for me, and I’m not dealing with that now.

  • Elaine Gross
    7 years ago

    My doctor told me the more treatments I get, it will become more effective in relieving pain. I go next month for my third round. It definitely helps the occipital nerve pain. I was near suicidal with that pain at one point. I have cervical dystonia and it’s supposed to help that, but I still have pain there, and not just with migraines. I always say one thing to remember – Botox does not stop migraines. It may help relieve the pain associated with a migraine, but you still get all the other symptoms. Still, relief from pain is welcome.

  • Barbetta Reedy
    7 years ago

    just wat ch out on the botox it can give the side effect of acid reflux because I had that done about 6 yrs ago for my pain management and being so close to my throat that is what I got from it just wished that it helped me it didn’t.

  • Scott Robertson
    7 years ago

    Botox seems to be an answer for people with Occipital Neuralgia, which often gets misdiagnosed as migraine. I have both. I’ve just been waiting for my insurance to change so I can find someone that offers this service. But Scorpion Tea? Is that like that Cobra Venom stuff?

  • Leticia Amado
    7 years ago

    Ive had a migraine everyday for the last 4 wks now..I’m saving my money to get Botox, to bad Insurance companies can’t pay for this.

  • Migraine.com
    7 years ago

    Hi Leticia – Many insurance companies are paying for Botox now that it has been approved for Chronic Migraine. It depends on your plan and your diagnosis…. and a prior authorization is often needed. You can learn more about insurance coverage for Botox here (Allergan also has a patient assistance program): http://migraine.com/blog/botox-for-chronic-migraines-will-my-insurance-cover-it/

  • Barbara Leibforth Downes
    7 years ago

    I work with migraine patients daily, and find the ones for whom this toxin helps are the ones with considerable anger which relates to facial tension, particularly between the brows…that look of scowl..the injection apparently breaks the vicious cycle between the emotional brain, the facial muscles, and their reflexes into cranial blood vessels and nerves.

  • Ellen Schnakenberg
    7 years ago

    This particular errant and not especially helpful tangent is but one of the many reasons it is always best to be seen by a Headache and Migraine Specialist who is experienced and well versed in the latest diagnostic methods for Migraine and other headache disorders, as well as treatments and research.

    With all due respect, having a degree in Neuroscience or a license to practice chiropractic – or even medicine or neurology which you have not indicated you possess – is no substitute for the specialized and concentrated training in this arena that true specialists have worked their lives to gain. In fact, we frequently discuss here the serious lack of knowledge and ability within the highly specialized practice of neurology where Migraine and headache specifically is concerned. (Attend a Headache and Migraine conference and you’ll see what I mean first hand.) Research has come a long way – thankfully. I suggest that no headache specialist subscribes to this particular *anger theory*, but I would of course back down on that statement should any peer reviewed research be offered here.

    Botox itself is far from a first line treatment. In fact, it is one of the last treatments offered to chronic Migraineurs. See this link for more details: http://bit.ly/tjfHBz Physicians have to work extremely diligently and spend inordinate amounts of time trying to get their patients approved for its use, with no guarantees their work will even be fruitful. They are not interested in trying this expensive and time exhaustive treatment on patients who have not previously failed preventive therapies and aren’t likely to respond. That said, it is an imprecise treatment, and each patient is different.

    As to the “scowl” lines which are often attributed to squinting in sunlight or with incorrect vision, few injections actually occur in this area at all. The majority of injections are actually given behind the area of the face, particularly the occipital area and neck/shoulder regions. Additionally, it is currently thought that the toxin works outside the scope of freezing muscles as many would think, by actually interrupting pain signals: http://bit.ly/tnmhGl . The paralysis of facial and other muscles is seen as a side effect of the treatment, not the primary endpoint as in plastic surgery techniques or treatment for Dystonia.

    Additionally, allodynia and central sensitization http://bit.ly/pCvE99 is part of the neurological Migraine process and should in no way be mistaken by patients as the result of anger.

    If you would like to backtrack and explain your theory in terms easy for our general readers to understand and learn from, backed by peer reviewed articles that speak directly to Migraine and onobotulinumtoxinA therapy, I would encourage you to do so in the forum section of our website here: http://migraine.com/forums/ Respect for our members includes making sure we make each contact as effortless a learning experience for all that we can.

    It’s important that we not put conversations here (Kerrie’s personal blog post) back into the stone age where sometimes a simple answer “Please be careful, it may not work for everyone” will suffice.

  • Teri Robert
    7 years ago

    Barbara Leibforth Downes Nobody posting here is disputing that. That doesn’t negate what your comments about anger can infer to people, and not everyone reading will comment. When asked for studies to demonstrate your point, you posted a link to an abstract that didn’t prove it at all. It would appear that there’s really no point to my continuing this discourse.

  • Barbara Leibforth Downes
    7 years ago

    It is a very real neuro-biological phenomenon, I don’t think anyone is disputing that.

  • Teri Robert
    7 years ago

    Barbara Leibforth Downes that’s not all, Barbara. Not when you make statements that can help strengthen the misconceptions about and stigma associated with living wit this disease.

  • Barbara Leibforth Downes
    7 years ago

    Thanks, we are only discussing which person might gain relief, that is all…

  • Teri Robert
    7 years ago

    Barbara Leibforth Downes btw, if you think you anger gives you a Migraine, consider looking for underlying triggers that occur when you’re angry — dehydration, poor sleep, skipping meals, etc. Also, stop to consider that because of the fluctuation of neurotransmitters such as serotonin and norepinephrinem, your anger could actually be Migraine prodrome.

  • Teri Robert
    7 years ago

    Barbara Leibforth Downes Allow me to quote from the abstract you posted, “These findings cast serious doubt upon many psychological theories regarding the etiology of headache and on the relationship between affect and headache in general.” It hardly supports your position. I’ve had Migraines for over 50 years and have worked with Migraineurs every day for nearly 12 years now. And, yes, I feel quite comfortable dismissing your comments about anger. That’s nonsense.

  • Barbara Leibforth Downes
    7 years ago

    So I do get angry at stuff, and have no thought at all of that being a psychological disorder. I am ok being angry enough to do something about it, and if that gives me a migraine, well, at least I know there are avenues out of it…

  • Barbara Leibforth Downes
    7 years ago

    As we know there are many etiologies and no migraine sufferer is exactly the same as another. Some have myospasm and may need to increase hydration and mineral load. Some have highly inflammatory diets, or hypersensitive immune systems which make their tissues likely to react with inflammation. Some vascular anomalies come from NSAIDS and the down-regulation of inflammation which is generally meant to heal. Some suffers have extraordinarily tiny spinal canals in the upper neck which by itself leaves no room for error and the vertebral arteries become occluded just by changes in barometric pressure affecting the linings of the tiny joints there.. Some have head or neck injuries. it goes on and on…but for these folks, the btx probably wont help. Many have rebound headaches from all of it, and I tell you that makes me angry…because no one should have to live with that. It is truly miserable and I spend half my life helping others get out of that personal h*ll.

  • Barbara Leibforth Downes
    7 years ago
  • Barbara Leibforth Downes
    7 years ago

    Certainly not a blame, and in fact emotional affect is likely healthy, so there is no criticism of anyone intended. The intention is only to break a reflex, and one that works really well if that particular relflex is in play. There is no implication of a psych disorder. It is just a component of looking for the person to whom this modality may be useful. If those muscles aren’t overly contracted, even on a micro level, the injection won’t produce the desired relay. If it is only the botox doing the chemical change, why is there a particular pattern needed in particular muscles, they could just be injected anywhere. Those particular muscles have meaning to the CNS, and as part of the chicken/egg analogy can cause or be caused, who cares which it is if you can make it stop.

  • Louise M. Houle
    7 years ago

    Barbara Leibforth Downes I’d be curious to know if you have any studies backing up these claims, both about the affects of anger on migraine & the longterm effects of receiving botox injections. While I agree being angry can contribute to facial tension, among other ill effects, this is not the only reason the face hurts – and not THE cause of migraines. Chronic migraineurs often live with allodynia (in the face, neck, shoulders) from the constant muscle contractions and inflammation surrounding the blood vessels that accompanies being in chronic head pain. Botox helps reduce that pain for me. I agree that there is a strong body/mind connection in us humans, but we have to be careful about the way we talk about that to not BLAME the patients or overstate the misconception that migraine is a psychological disorder. Certainly working toward being healthy in body and mind can only help us feel better – but it is not necessarily a cure all, nor is it THE cause of all illness. Just putting in my 2 cents worth 🙂 Be well.

  • Barbara Leibforth Downes
    7 years ago

    Sorry if it came across that way Abi, as I am a woman who lived a life of migraines, am a neuroscientist and physician. You may want to read up on neuropeptides and IS, information substances and the chemical cascade from the limbic system and the facial muscle ramifications of particular emotions (affect). That said, a person whose headache is relieved by botox is not necessarily an angry person, s/he may be a victim of someone else’s anger, or sensitive to someone else’s anger…who knows. It is complex and each an individual. In my 27 years as a physician working with these MEN and women I find this to be a significant differentiator as to who may and who might not respond positively to that sort of intervention. The article was about concern about going in and potential for making things worse. I would hope to learn every angle known before making such a bold move, and that is what I sought to offer, yet another lesser known pathway and differentiator.

  • Abi Addison
    7 years ago

    Barbara Leibforth Downes I’m sorry, but that statement is just wrong. Read up on how botulinumtoxin works. It has nothing to do with anger or how anger might lead one to tense between the brows. Statements like that one, when made to people who don’t know better and don’t have migraines helps feed the misconceptions that go way back to the old stereotype of hysterical women having “sick headaches.”

  • Barbara Leibforth Downes
    7 years ago

    That said, if you are not harboring anger, it probably won’t help the headaches, and may give some dastardly toxic sequelae that is not always apparent in the short run.

  • Dawn Sims
    7 years ago

    I am scheduled for Botox injections in 2 days. I too am skeptical and leery. After having migraines for 20+ years, and the fact that my neurologist uses it himself, I will give it a try.

  • Renee Starkey
    7 years ago

    Go for it Dawn Sims! I have had it done twice now and it has helped me a lot! I am glad your neurologist is knowledgeable about it. They all should be of course, but well….

  • Migraine.com
    7 years ago

    Best of luck and please let us know how things go!

  • Teresa Schippers
    7 years ago

    Ive Tried the botox. needless to say, I’m still looking for a answer!

  • Nicole Caglioti
    7 years ago

    I recently had my first treatment of botox. I was scared to try, but I had felt that I run out of options, and at 27 that alone was a scary thought. After having a constant migraine for 3 months, and being out of work and in bed. I finally got approved for botox. I’m feeling better. Not completely healed, but better enough to where I am back to work. It took 3 weeks for me to feel better but it has help. I don’t know if Botox is for everyone but it has help me. The only side effect is occasional muscle pain in my neck.
    Best of luck to everyone of there suffering from this horrible condition.

  • Selinitii Dilley
    7 years ago

    I also am schduled for botox soon, but really unsure after hearing many stories it can make the headaches worse.

  • Louise M. Houle
    7 years ago

    Renee Starkey Where did you read that? I get mine every 2.5 months. For some people Botox works for longer periods, 3 months on average. For me it is less. And I receive them from a reputable migraine specialist who has been around, let’s say, for a very long time 🙂

  • Renee Starkey
    7 years ago

    It helped me and I was getting them every day! Just make sure you wait the full three months in between otherwise you become immune to the Botox!

  • theresadz
    7 years ago

    Keep us posted on how it goes!! *huge hugs*

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