- CASE FILE
Both my twin sister and I, suddenly (and with no real prior history) became ill with extreme and rare forms of chronic migraine.
ABOUT THIS CASE FILE
I am 40 years old. I am a wife and mother. I am also an identical twin. A few years ago my sister suddenly became ill with a horrible vertigo that doctors couldn’t help and couldn’t explain. Eventually after a slew of tests and specialists and medicines, they realized she was having vestibular migraines without pain. She has them every day. She has many triggers she has to watch out for. She walks with a cane, she can’t drive, and many days must stay in bed because the vertigo is so bad. Her neurologist is doing what he can but she’s tried every medicine out there and they just aren’t designed for her type of migraine.
Not long after she became ill, I also became ill. I got a classic migraine (which was unusual for me) and it wouldn’t go away. This classic migraine evolved into several forms of migraine and headache conditions that strike over and over throughout the day. I have vestibular, hemiplegic, and classic migraines. I have paraxilmal hemicranial and cluster-type headaches. I takes many medications and injections. I’ve seen several doctors and tried different procedures. I’ve stayed at the Diamond Headache Clinic in Chicago for two weeks for in-patient treatment. They were incredibly thorough and exhaustive, but in the end all they could say was, “we’re sorry but there’s really nothing more we can do for you. “
None of this has included my biggest problem and mystery. My migraines are triggered by all eating and drinking. All. Even water. Currently my medicines allow me to eat a few foods and drink 2 different drinks with minimal pain which is a huge victory. But I need help to fix this. I know it sounds absurd but somehow my brain is so broken, it won’t even let me drink water.
When I first started getting my migraine and I went to my first neurologist, he had me do an elimination diet to see which food triggers I might have. Very standard, right? I slowly started taking foods out based on my body’s response to them. My nose would burn, my lips and face would go numb, pain and stiffness would shoot down my neck, sometimes my jaw would freeze up. I could tell these foods or drinks were triggering migraines for me. I was slowly losing things like berries and soda and oats and citrus and other things. But it wasn’t that concerning until I got down to my 5 foods. I was stuck with my 5 foods but at least I had those and water of course. It’s not like I could ever lose that, right? But then potato’s started to trigger me, and then rice, and then butter, and then chicken. Then I lost all my foods and all I had left was water and I remember driving and drinking from my straw and my lips going numb and my face and neck stiffening up and trying not to panic and the tears welling up. All I could think was, what happens if I lose all foods and water too? Also...I gotta pull over. :) My doctor and I worked out a plan for me to eat and drink once a day and take a pain killer as a rescue. That worked for a while but I have a new doctor now and we’ve adjusted some medicines and I’m able to eat several foods ( probably 10) and two kinds of Gatorade (still no water) without taking a rescue med.
So I walk with a cane, I can’t drive, but most of all, I’m still losing weight because I can’t get enough calories. Eating and drinking triggers my migraines and I need help.
Both of us do.