Social Anxiety Support Forum banner
1 - 12 of 12 Posts

·
Banned
Joined
·
12,147 Posts
Discussion Starter · #1 ·
Anyone else have epilepsy? I've had it since I was 15. It embarrasses me to no end. I'm terrified of having seizures where people can see. I can barely even bring myself to talk about it with my doctor to get my prescriptions refilled.
 

·
Banned
Joined
·
12,147 Posts
Discussion Starter · #3 ·
^ I've had more either in my sleep or when I was in the process of drifting off to sleep than I have at other times in the past few years. But they could still happen anytime.
 

·
Banned
Joined
·
12,147 Posts
Discussion Starter · #5 ·
Mine used to be very infrequent (with Depakote). Are you taking meds for yours sparkationsgirl?

I did OK with mine until about 2004 and they just started happening more often despite the meds.
 

·
Registered
Joined
·
218 Posts
I have actually lowered my dosages. I figured out which vitamins and mineral supplements I needed, as well as diet modifications required, to control the seizures.
 

·
Banned
Joined
·
38,431 Posts
It embarrasses me to no end. I'm terrified of having seizures where people can see. I can barely even bring myself to talk about it with my doctor to get my prescriptions refilled.
I can certainly see how having a seizure would be quite embarrassing especially for those with SA who definitely don't want to be the center of attention in public.

I assume it's SA that makes you uncomfortable with doctors though, right? Out of all the medical problems one could have I'd rate seizures as not at all an embarrassing issue to discuss with doctors. After discussing erections & hemorrhoids and all other sorts of sensitive issues all day I bet a doctor welcomes hearing about something like epilepsy.
 

·
Hated by all females
Joined
·
539 Posts
yeah with you on this one. I don't have epilepsy per se, I just have a generalized seizure disorder. One of my biggest fears is having a seizure out in public. So it makes my SA even worse. I've had to have 4 ambulances called for me because I had a seizure around someone who didn't know about them. I'm always 100% back before the ambulance even arrives, but it is still humiliating and not to mention costly.

If you ever want to talk, then just pm me

sux
 

·
Registered
Joined
·
21 Posts
Hey PickleNose, I also have epilepsy. I can empathise with the embarrassment - just yesterday I had a fit while taking a sip of coffee. I dropped the mug and broke it, and the coffee was all over me, the floor and my friend's new couch. And the coffee was hot too!

I'm sorry to hear that the seizures are starting again - could you try different meds, or perhaps Taurine supplements?

Good luck with everything!
 

·
Banned
Joined
·
12,147 Posts
Discussion Starter · #10 ·
I can certainly see how having a seizure would be quite embarrassing especially for those with SA who definitely don't want to be the center of attention in public.

I assume it's SA that makes you uncomfortable with doctors though, right? Out of all the medical problems one could have I'd rate seizures as not at all an embarrassing issue to discuss with doctors. After discussing erections & hemorrhoids and all other sorts of sensitive issues all day I bet a doctor welcomes hearing about something like epilepsy.
Well, it's a little complicated. I really have no idea why it embarrasses me so much. It just does. The SA does make it harder to talk about anything with a doctor. I've always been the type who would practically die before getting help for something because I was too embarrassed to even speak.

What meds are you on?
Depakote. Worked well for years. Still works pretty good but I sometimes have them.

yeah with you on this one. I don't have epilepsy per se, I just have a generalized seizure disorder. One of my biggest fears is having a seizure out in public. So it makes my SA even worse. I've had to have 4 ambulances called for me because I had a seizure around someone who didn't know about them. I'm always 100% back before the ambulance even arrives, but it is still humiliating and not to mention costly.
Yeah. I've had people call ambulances because they didn't know I had epilepsy and didn't know what to do. My family knows so they won't call an ambulance unless the seizure lasts longer than it should.

Hey PickleNose, I also have epilepsy. I can empathise with the embarrassment - just yesterday I had a fit while taking a sip of coffee. I dropped the mug and broke it, and the coffee was all over me, the floor and my friend's new couch. And the coffee was hot too!

I'm sorry to hear that the seizures are starting again - could you try different meds, or perhaps Taurine supplements?
Never heard about taurine being good for epilepsy but I might try it. I haven't ever burned myself (yet) but I can imagine that would suck pretty bad. Sorry to hear that. I have, however, whacked my head on many assorted objects. It's so strange to wake up in the floor and not really know what's happening. It seems like they're nocturnal more now than they used to be. I'll sometimes wake up in bed with a bitten tongue, a headache and a few assorted scrapes
 

·
Registered
Joined
·
218 Posts
ha ha,

i forgot to mention-when i wake up from a seizure-i get red spots ALL over my face. they go away in a few days, but quite embarassing indeed. Thank goodness I don't get these seizures often.
 

·
Hated by all females
Joined
·
539 Posts
Well, it's a little complicated. I really have no idea why it embarrasses me so much. It just does. The SA does make it harder to talk about anything with a doctor. I've always been the type who would practically die before getting help for something because I was too embarrassed to even speak.
yeah, I don't say anything to the dr because it's just to hard to talk about sometimes. Of course he's a neurologist so he probably sees 10 cases like mine a day. But still embarrasses me... It took me 3 visits(span of 18 months) to finally ask why I can't sleep. Which was good b/c that led me to psychiatrist, which led to psychologist(I've known I need therapy for 15 years but was way too embarrassed to ask)

Depakote. Worked well for years. Still works pretty good but I sometimes have them.
Tried depakote once...did not work too well...Had a full out gran mal seizure, ironically in the waiting room at my neurologist's office. Woke up about 30 minutes later in the hospital. I'm now taking Lamictal and Tegretol
 
1 - 12 of 12 Posts
Top