Botox Injections for Migraines with Autism

My chronic migraine history is extensive and spans around 30 years. I’m disabled because of refractory migraines. I take daily medication for prevention, but I cannot tolerate a therapeutic dose. I’ve tried everything else over the years and now I’m finally trying Botox and wanted to share about the experience from an autistic perspective, since I’m finding it surprising.

Sometimes, while enjoying a conversation, I will intentionally smile in order to convey my enjoyment to my conversation partner.

Other times, I will notice that I’m smiling without having initiated it on purpose. This can happen, for example, after watching a video of an infant giggling, or while watching my beloved give a keynote at a conference or other venue, something she’s very, very good at and so I’m beaming with joy as she does her thing.

And of course the ways in which mirror neurons work to support our social interactions (Bonini et al., 2022) can make joy and laughter literally contagious.

Studies have suggested that our facial muscles provide very important feedback which we use in the formation of emotions as well (Adelmann & Zajonc, 1989).

And I’m sharing my case study of one autistic person who has recently begun receiving botulinum toxin type A (BoNT-A) for migraines in accordance with FDA guidelines in the U.S. for such treatment (Becker, 2020).

According to what’s known about the intervention, people in general tend to experience reduced frequency of migraines and reduced severity of the migraines they do have (Shaterian et al, 2022). That sounds pretty awesome to me, and I’m glad to have begun this intervention.

I just received my first treatment a week before writing this article, so I cannot yet speak to the effects of the intervention on my migraine frequency or severity at this early point. I can expect to see potential benefit in as soon as a few weeks from now, or as long as nine months from now, which will be after I’ve received three rounds of injections.

What I can share early on here is that it has poked me in unexpected ways because it has changed how my facial muscles can potentially contract in order to provide feedback in forming my emotions!

Zero people mentioned these effects, which my autistic self is quite distracted by. Is it because I have prosopagnosia that I’m so thrown for a loop with this? Perhaps it’s alexithymia. Or maybe it’s just autism. I’m really not sure yet, but messing with how my face moves along with my emotions is messing with the experience of my own emotions in ways that range from distracting to distressing. That much I do know.

I don’t know yet how much this will affect my social interactions. For now? I kinda look like an angry pumpkin, one who has a bit of a janky right eyebrow whenever I attempt to raise my eyebrows.

 

And when I am making a neutral facial expression, at rest, the angle of my eyebrows is such that it appears that I am feeling some kind of way other than neutral. One of the two doctors who administered the injections reminded me that if anything weird happened (such as a janky eyebrow) it would only last for about ten weeks, and that the next time could be different.

I will be curious to see how this aspect of the treatment affects me as an autistic person. But if it helps my migraines? I will figure out how to negotiate the variable emotional feedback data coming from my face.

This is assuming that Rachael can handle this angry pumpkin look and know that it’s not anger, as well as whatever the future rounds of it all may bring. We shall see!

I will update this post after the second round of injections, to report whether I had success with it improving my migraine situation.

 

Update After Two Rounds

Well this botox for migraines treatment has been a pretty big success for me, I would say. After the first round of injections, my migraine frequency, severity, and duration markedly declined about a week beyond the treatment. And that relief lasted until my next scheduled injections were about 2-3 weeks away.

It was an abrupt shift back to much more frequent migraines, which caught me off guard. Then I considered the calendar and realized that the effect had likely worn off and I eagerly awaited my second round.

 

Then again about one week after the botox injections, the migraine frequency subsided. And the difference is remarkable, so much more than I’d hoped for or expected going in. This has been a welcomed, pleasant surprise. The downside is dealing with those 3-4 weeks of in between time, but the treatments buy me 9-10 weeks of remarkable relief. I am grateful.

My Migraine Preventions

Botox is now my primary migraine preventative. I also take topiramate at a low dose of 25 mg bid. Any more and I have impossible side effects. Any less and I have impossible migraine frequency, even with the botox (we tried to discontinue – no go). And there are reasons why I cannot take many of the other things that are used for migraine prevention.

Also, I cannot stress enough how much of a difference diet, sleep, and hydration can make for my migraine situation. This matters more than anything actually. Anyone looking for more pills and interventions should first, in my opinion, make the lifestyle changes they can make to lessen the frequency, severity and duration of their migraines.

My Migraine Treatments

When I get a migraine, what do I do? I take Tylenol sparingly due to a rebound tendency I have with it. I use triptans sparingly but as needed, usually zolmitriptan 2.5 mg or sumatriptan nasal spray.

I also use a Cefaly device, which I received from the VA several years ago. Cefaly is definitely not for everyone but I have relief from it about 1/3 of the time. When it works for me, Cefaly puts me to sleep and seems to turn off the migraine. It is sometimes a bit magical, and other times like nothing.

I cannot take ibuprofen, unfortunately, at all, because of GI reasons. When I get a status migraine, I end up taking a Medrol dose pack to knock it out. I always have one on hand so that I can begin it if I need to.

And I absolutely love this thing that I call my eyebrow massager. That is an ad. It is usually around $60 and I absolutely love it. I connect audio to something distracting and it’s like somebody is massaging my eyebrows with heat? For me, it’s so nice.

And another essential in my migraine prevention and treatment is a good light-blocking eyemask. For years I’ve loved this mask. That’s an ad also. It usually costs around $35. I’ve used mine almost daily for three years.

That’s it! Hope this is useful to some folks.

Want to discuss this topic? There is a thread about it on the facebook page.

References

Adelmann Pamela K., Zajonc R.B. 1989. Facial efference and the experience of emotion. Annual Review of Psychology, 40:249–280. DOI: https://doi.org/10.1146/annurev.ps.40.020189.001341.

Becker, Werner J. 2020. Botulinum toxin in the treatment of headache. Toxins 12(12): 803. DOI: https://doi.org/10.3390/toxins12120803.

Bonini, Luca, Cristina Rotunno, Edoardo Arcuri, and Vittorio Gallese. 2022. Mirror neurons 30 years later: Implications and applications. Trends in Cognitive Sciences, 26(9): 767-781. DOI: https://doi.org/10.1016/j.tics.2022.06.003.

Shaterian, Negar, Negin Shaterian, Aref Ghanaatpisheh, Farnaz Abbasi, Sara Daniali, Maryam Jalali Jahromi, Mohammad Sadegh Sanie, and Amir Abdoli. 2022. Botox (OnabotulinumtoxinA) for treatment of migraine symptoms: A systematic review. Pain Research and Management. DOI: https://doi.org/10.1155/2022/3284446.