Well I posted a couple of weeks ago that my doctor was looking into a possible diagnosis between seizures, narcolepsy, and migraines. I am still waiting to see how that goes.
Wednesday I had my consult with the sleep clinic which flagged me a lot for narcolepsy, which may or may not be relevant as I know these intermesh a lot with each other.
I have continued logging all of my seizure like episodes since I've noticed that they were more than just typical chills. If I knew how to link that post I would .The gist is for those who have not read it is it a chill like feeling in the back of my Neck, head and shoulders. My eyes would roll back and eye lids would flutter. Started out lasting roughly 2-3 seconds then progressed over time to 3-5 seconds. There was a cold shiver included with the eye roll and my head would snap backwards.
As time passed by symptoms slowly progressed. Some nights I would have 5 or 6 back to back, mainly if I were in a vehicle that had wind and ac sometimes none. Seems to be triggered by wind and cool/cold air. I cannot induce it nor does it happen all the time. Afterwards, I am sometimes sick or have aa headache, but I am always sleepy for the rest of the day.
I have continued to maintain awareness. In the last week or so my arms have begun to jerk upwards during these 'episodes' and shake a touch. Not long. Like I said they only last a couple of seconds.
Now...the newest thing that would freak me out if I were not on an awesome bipolar regimen that squashes my anxiety.....
Yesterday I had an epidose. The heat index was about 100 degrees and I was sitting in front of a huge fan trying to stay cool. Hair was pulled up. Next thing I knew my arms, shoulders, neck, and head tensed and jerked. My head snapped back. Eyes rolled. Lids fluttered. I can't remember if I felt the usual cold shiver or not because when my arms jerked upwards I felt a warm tingle that felt like electricity [best way I can describe it] go all the way to my finger tips of both arms. It matched perfectly. It was not painful like neuropathy, not pins and needles, just a warm electrical tingly feeling if that makes sense... I don't know how else to describe it. It started and stopped with the episode.
Does anyone have any ideas on this???
Hey! This is actually my first time creating a topic, but I've been googling this all day. I have medicare, so it's super hard for me to get a hold of my neurologist when I want to! He actually has to get special permission from the hospital to call me because I have an out-of-state number (whhhhaaaaattt!?), so I'm turning to you guys for some help and hopefully peace of mind in the meantime. I just started taking Topamax for migraines a couple months ago and went from an initial 50 mg to 25 mg a day when my pop culture trivia started going out the door. Everything seemed to be going a lot smoother minus a few *regular* headaches every so often UNTIL the past week. Suddenly, I finally started getting that pins & needles side effect I had been warned about... or at least I think that's what it is... My feet seem to be tingling on and off for the whole day sometimes. I try to drink a whole glass of water when I take the pill too. Sometimes the pain is actually painful and distracting. I'm a bit worried this is neuropathy and not a side effect as my grandfather had diabetes and hashimoto's thyroid disease runs in my family....BUT I'm led to believe that topamax is given to patients suffering FROM neuropathy sometimes?? Sooooo....does this type of tingling as a side effect sound normal? Do some people feel the tingling on and off for the whole day and is it almost painful or actually painful for some people??
so... i think the one time i've ever been taken seriously in this whole thing is when i mentioned i have little blips in my memory. the first few times it happened it was something as little as standing up and then suddenly finding myself at the door and not remembering walking. over the past year and a half it's gotten worse - i've forgotten entire days and i've suddenly found myself in the middle of doing really important tasks, like in the middle of a line on stage or taking a curve in marching band. once i was getting dressed for school and then i was making out with my boyfriend and there's obviously a lot missing in between those two points. i still don't know if those were whole days in between or if they were just hours or even minutes.
i told our chinese medicine specialist this while my mom was out of the room and she said it was probably some kind of brain seizure and i would need to go in to be scanned for that kind of thing. she also said my uncle had a history of the same kind of thing.
what am i supposed to do about this? is this a seizure? will it get worse or damage my brain?
Do you get pre seizure notification?
If so what happens and what does it feel like.
I have become a bit twitchy lately, but I am on a ton of anti seizure meds. I am not epileptic.
I have two,cavernous cerebral hemangiomas, and cannot afford another brain bleed/seizure.
I do have an appointment with my neurologist.
But really wanted to hear what other people experienced.
My last seizure I became very twitchy along with hand curling.
So far I am just a bit twitchy.
Thanks in advance for sharing your experience.
Oh one more thing when I do seize it's a grand mal.
By Monica Jansen
They lasting in about up to 10 seconds. And only during sleep when i wake up. Its numbness in my half left body and it happends Even if i have not layed on the left site. I very often wake up on my back. And after i was on the toilet this night, i had a attack of numbness/tingeling in my left arm when i went to bed again. Is this sensory seizures epilepsy or something?