I imagine that migraine has worn grooves into my brain, creating a map that will help researchers explore the wilderness of migraine. Although I know the changes are not so literal and visible, I’ve talked about donating my brain to migraine research for at least a decade. I want the agony I have endured to be used to further the understanding of migraine. I know my work does that to some extent; I want to do more. I want to impact the science. The American Registry for Migraine Research, which is getting up and running this year, will provide a place to do that. (Not only by donating brain tissue, but donating blood and saliva samples as well as data.)
I was interested in donating my body to science since well before chronic migraine disabled me. Then I started to read Stiff: The Curious Lives of Cadavers. It was so disturbing that I didn’t get beyond learning that cadavers are used for all sorts of science, including cosmetic surgery and crash testing cars. To me, donating my body to science is a way to advance medical knowledge. Having someone practice a nose job or tummy tuck on my dead body is less idealistic. I know those procedures are not always for cosmetic reasons, but the vast majority are.
I remain undecided about donating my entire body to research. Fortunately, this is not a decision I have to make. Not only because I don’t plan to die soon, but because the migraine registry will allow me to donate brain tissue to migraine research without committing the rest of my body to science.
Would you donate your brain to research?
I would hope my brain could lead researchers down the road to a cure, not just palliative care. There HAS to be something wrong with the way my brain functions. The blood paths. That is the only thing left to look at. But I have had no doctor even explore that option. I’m so sick of this. Every day it’s another headache or some other subtle symptom that makes me want this all to go away. People don’t have full lives with Migraine disease. Migraine is a joy and life stealer. How many of us have taken grave risks with treatments? And what are we subjecting are bodies to in the search for pain free days? God only knows.
Thank you so much for writing this! I have had the same crippling migraine for over a decade now, and I think I may be close to my own, personal answer – I always knew that I was VERY sensitive to MSG, but had serious trouble finding out what my food triggers were, until I looked up the many varieties of ways the food industry is allowed to hide MSG in their labels. For others like me, if your migraines seem out to punish you after eating just about anything, yet working on a food triggers list seems like water is your only truly safe substance to ingest, look into glutamates and other excitotoxins. After nearly 3 decades of migraines, and going from occasional, to chronic, to transformed, and nursing all of my kids through their own battles with such a merciless beast, the idea of donating my body to research has been on my mind for many years. However, I also shared your concerns about my old (fairly fat, if I die soon) carcass being utterly wasted on tummy tuck practice, or worse, forensic decomposition experiments, left me feeling very wary. Also, I’m an organ donor, and haven’t looked into the fine print on who gets what, even having a few humorous dreams about people in lab coats playing tug-of-war with my corpse! So glad you were far more proactive about finding out how to ensure that the right people get our brains at the very least. This article instantly joins my personal list of most helpful articles I’ve ever found in cyberspace. Thank you, Thank You, THANK YOU!
LaSayle – THANK YOU for the information about the excitotoxins. From researching that term I found out hydrolyzed protein is a trigger under the “salt substitute” category. READ everything: labels, articles AND comments. You never know what might lead you to the answer!
I hadn’t thought about donating my brain to migraine research before. I’m interested in pursuing this! The American Registry for Migraine Research link you include (https://americanmigrainefoundation.org/programs/american-migraine-patient-registry/) goes to an unfound page. Could you please update it? Thanks!
Thanks for pointing that out, Amy. I’ve updated it. The program isn’t ready for donations yet, but they expect to announce details sometime this year.
Take care,
Kerrie
Yes! I like knowing my brain might help someone avoid the pain and suffering of migraines.