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 beccause I have prosopagnosia that I’m so thrown for a loop with this? Maybe it’s alexithymia. Or maybe it’s just autism. I’m really not sure yet, but messing with how my face moves 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, scheduled for 14 June 2024, to report whether I had success with it improving my migraine situation.

 

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.