I am wondering if anyone else has had the same
Hi, everyone. I am new to the group, so forgive me if this is redundant, but this one is scary and I just want to know if anyone else can relate.
I will tell you my story and I am not sure all is connected to hemiplegic migraine, but maybe it is.
When I was 3, I had seizures and convulsions due to what they said were my extreme fevers. I not only have a rare migraine, I have a rare gene for inflammatory response, and a rarer condition that is basically "Bubble Boy" Lite and I can't fight off infections. I have immunoglobulin (plasma) infusions that I do at home weekly.
Anyway, at age 12, I have a tbi (traumatic brain injury) and I get "head" migraines for several months after this and they are brutal, but seem to go away mostly.
By 23, I start noticing I am forgetting things and start having trouble reading books as I struggle to understand the words and forget within moments what I have read.
Not long after, I get my first brain zap as I don't know what else to call it, but it feels like lightening hits my brain.
After that I start to struggle with more brain fog, double vision, blacking out and this becomes chronic for forever and I get passed around by doctors who either think I am losing my mind and/or don't know what to do with me. I also, at this time, get a "head" migraine that lasts 6 months without relief.
I deal with these symptoms throughout these years because nothing helps and I just have to.
At about age 40, I had been dealing with all of this over the years and then one day, I can't make sense at all of what people are saying to me and they can not understand me because my left side of my face falls and I am slurring my speech.
I can't stand long on my own and I begin blacking in and out. I go to the E.R and no one can understand me and they are having to get me to stand. I am blacking in and out. Eventually, a doctor comes in and tells me that I had low sodium and what he calls a hemiplegic migraine.
I don't get referred anywhere, but I have issues with sodium sometimes so I think, "The sodium must have caused a weird migraine, I can stand now. Moving on." I didn't know what "hemiplegic migraine" meant.
I continue having severe blurred vision, brain fog, forgetfulness daily. That's life and no one has referred me to a neurologist. Headaches aren't common, but happen occassionally.
Years go by, I start having issues with my arm feeling disconnected. The bones and muscles and tendons feel disconnected. This is off and on. Then my knees start to do much like the arm. I have inflammation issues and arthritis, I think that I must be dealing with arthritis and getting older.
Then one day, while the double vision gets more intense, I get another brain zap ( like lightening in my brain and it is bigger than the last time). Very scary and hadn't happened in like 20 years.
Only a few days later, I can't use my arm to pick anything up. It is fully paralyzed.
I can't wear my wedding band because it weighs my finger down and I struggle to stand and walk at times as I do not feel stable. I start getting numbness in different parts of my body and the twitching/rolling starts to really get bad.
No headache, but it is scary, so I go to the E.R and within hours I get a pretty nasty headache.
This is when they tell me I have "complicated" migraine and finally refer me to a neurologist.
Neurologist tells me certain medications will cause me to have a stroke so I get put on 100 mg of metropolol, steroids, and Nurtec.
This is when my mother admits to me, in the winter of her life, that she gets ocular migraines which I have read can be connected to hemiplegic migraine.
4 months later, I am still dealing with weakness, though not as severe, in my arm and leg. I still can't wear my ring. The blurred vision is still not great, but better. Headaches or "head" migraines are few. The twitching has resolved in my face, but it is literally all over my body still.
The only thing that helps a little is doing redlight therapy. I am beginning to think this is permanent this time or maybe something worse.
The disconnection feeling has gotten better some, though.
Has anyone had the weakness this long or any of the other weird symptoms like feeling disconnected in their bones and muscles? Was anyone passed around for a while? Does anyone relate?