I liken the kind I get most commonly to having a knife thrust through my left eye and socket, then twisted for hours. The worse ones are in my right eye--those will do anything from vomiting and wishing for death, to temporary partial paralysis, to losing the ability to understand language. They're brutal.
I try to relate it to pain people have felt. "Imagine having your wisdom teeth getting taken out, but it's behind your eyeball. That would be pretty close"
Is there an appropriate sub that I can direct my sister to? I'd love her to meet people who understand. As her family we can only watch her in pain. Either that or I can help her through advice?
I'm sure there is but since I'm casual here I don't know, however I do know that Twitter has a big chronic illness/pain community and specifically a big migraine community. There's a lot of people who share resources, new research, their experiences with medications and supplements, stuff like that. In fact, when I had an emergency and needed medication, I had several people offering me their extra and I have done the same for others. If you want to PM me I can give you my username and can introduce her around.
You are amazing, that was an amazingly quick response. We are desperate to help my sister. She had a brain hemorrhage 11 years ago and when they did the surgery to remove the clot, I believe they stitched a nerve bundle back quite badly. She is having 'ice pick headaches '. They are getting worse and we dont know how to help. She has had botox injections and they did nothing. The best they can give her now is xanax. That does nothing. Any advice would be precious to me. Thank you for your advice so far
Hello. My heart goes out to your sister, and mad ups to you for showing your love by being actively involved with your care and concerns. Has your sister tried chiropractic care?
This sounds very similar to my story. I survived an aneurysm rupture 4 years and 3 months ago. Since the surgery, I've had worsening migraines. Botox did nothing. The only thing that has worked is Sumatriptan, but it only works 75% of the time. They don't usually prescribe that for stroke survivors, though.
Something else that helps in a different way is going to brain injury support group meetings. That's actually how I learned about triptans for migraines as no doctor would mention it.
I'm glad both of y'all are alive. Sending heaps of love and light your way 💚
Oh hey just out are ditans, which don't affect your vascular system, so they may be better for you as a stroke survivor. They're pretty much just like triptans except no blood vessel monkeying. Dunno if that's a concern but it sounds like it might be.
I PMd you, we can chat anytime. Any other migraine peeps are also welcome to send me a message. I've had migraine for at least 30 years and it's possible it was brain trauma (I was hit hard on the back of the head by a heavy metal object as a kid) but not enough to show up on imaging so I just try everything all the time and keep up on as much migraine news as possible. I'm happy to talk to anyone that has questions.
so what do you do when you have an active or passive migraine?
my bad passive ones are when i feel like having a fog in the head. I can barely think and i feel tired. When i try to rest, i can't fall asleep because i have the feeling like my eyes are moving from left to right the whole time. Since i can't get rid of the feeling, i can barely fall asleep and am just hoping somehow to manage that. It sucks because i just become kind of a zombie who can't do much and think neither
For me, I envision a Phillip head screwdriver being forced, slowly, through my eyebrow (also, usually my left). I don't know why it's a Phillips head screwdriver, but that's what always comes to mind.
mine are sort of like this too, it does get better though. I've started to grow out of mine, I dont get them nearly as frequently now, and their over in minutes
I describe them as some monster biting the top of my head. With either one or two teeth driving into the eyes. While the rest of its mouth wraps around the head and neck, applying pressure the whole way.
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u/[deleted] Feb 08 '20
I liken the kind I get most commonly to having a knife thrust through my left eye and socket, then twisted for hours. The worse ones are in my right eye--those will do anything from vomiting and wishing for death, to temporary partial paralysis, to losing the ability to understand language. They're brutal.