I suffer with unusual seizures, would like to know if anyone else does?

(4 Posts)
kellysmadhousewonder Thu 09-Apr-20 22:47:49

I was diagnosed by the neurologist in March with a condition called migralepsy. Basically migraines but I get seizures with them . I'm taking 100mg topiramate a day which hasn't seemed to help yet as I'm having seizures nearly everyday still .

I know they are coming an hour or 2 before hand I get like a drunk wobbly feel, light headed so I know I need to get home or somewhere I can sit down for awhile.
The seizure takes over my head like pins and needles tingling all over my face specially my jaw and lips makes my face feel paralysed. (As if Iv been injected by the dentist)

My heart palpitates and I get this sudden tiredness and I'm fighting to stay awake I use to be out for 2 hours at a time but since my medication I'm only sleeping afterwards for 30mins an hour tops .
Within my seizure my heart rate drops down to 43beats per minute. It's really scary .

I google to find out about this and I find so little about it . I don't know anyone who suffers with my type of seizures . Be nice to know if any one has any experience .

X

OP’s posts: |
mrwalkensir Thu 09-Apr-20 22:58:59

www.facebook.com/groups/726009120941409/ might be a help (apologies for no other help, but didn't want you to get no response(

MilleniumHallsWalledGarden Thu 09-Apr-20 23:47:56

Bump for you op

Ispywithmycynicaleye Tue 14-Apr-20 04:25:00

I cant help either but think I've been having seizures in my sleep.
Weirdest thing ever, despite being fast asleep for hours, I get a couple seconds warning from my subconscious to brace myself, then I bite down on the tip of my tongue hard. I know I'm biting and I feel the pain but my jaw us clamped and I cant open it confused

Hopefully your thread keeps getting bumped up until someone comes along who can relate to your experience flowers

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