New here and Looking for support

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

missapril

New
Messages
4
Reaction score
0
Points
0
Hello :)

The name is April, I'm 20 years and live in Canada.

Epilepsy is fairly new to me, after a serve head injury after being assaulted in October 2010. In December 2010 one night while asleep (had a friend staying over) my friend heard me making a mouth smacking noise and my legs were shaking. She thought I was annoyed and came over to tell me she was going to bed. It was then when she noticed I was having a seizure. She called in my parents, who in turn called an ambulance. I was taking to the local hospital where I was observed for a couple hourse and sent home. About an hour later in my sleep I suffered the same seizure again and was taken to another local hospital where I was kept in for observation.

I came to the next day and do not remember a THING. All I knew was my tongue was bitten, all my muscles were sore, and I had a big headache and the story from what my friend and family told me.

Next month I had my sleep EEG and other tests with my neurologist. She prescribed my Valproic Acid 3 times a day and Elavil to relax me before I sleep.

I had little tiny minor seizures maybe twice a month after that in my sleep but nothing major but in June I went away to England for a month where half way through the trip I had another major seizure in my sleep. I bit my tongue, shook, the works. Nothing changed medwise or sleep wise besides the time change.

Most recently on December 31st, while alseep around 10am I had another major seizure while asleep. My parents called the ambulance but this time I would NOT leave my bed. I refused to go and apparently even told the paramedic to eff off (I swear I don't remember doing that.) the paramedics left and apparently I was looking at my cell phone when I flew back, smashed my head off the wall and started having another seizure. I was all tensed up in the body and face and was shaking everywhere.

This time I apparently went to the hospital because I was so out of it. I came to in the hospital bed when we arrived at the hospital.

I just wanted somewhere to share my experiences and see if anyone else knows what I am going through. It really is terrifying that these happen in my sleep and I have no clue. I'm scared one day I may choke and loose consiousness.

I'm also interested in switching medication, I feel like what I take isn't right.
 
Welcome April

Yaaay, another Canadian. There's a few of us on this site.

I was born with my seizures and even having them for so long I know how weird it is to not remember anything. Mine aren't convulsive but I often don't know if part of the seizure was cut out from my memory.

Meanwhile, make yourself at home & check out the rest of the site.
 
Hi missapril, welcome to CWE!

It sounds like your current medications need to be re-evaluated. Have you talked to your neurologist about adjusting the doses, or trying a different med?

It can also help to keep a seizure diary where you track not only your seizures, but any other things that might be potential triggers. These can include fatigue, alcohol, issues with metabolism/nutrition, low blood sugar, low blood pressure, fluctuating hormones, infections, food sensitivities, emotional stress, flashing lights... Triggers can occur right before a seizure, or as much as 24 hours beforehand. They can be discrete incidents or a cumulative effect.

There's more good info to get you started here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova
 
Thank you!

I have a feeling like my medication is not right but I have an appointment with a brand new neurologist next since my last moved 6 hours away (eek)

I've never thought about keeping a journal but I definitely think I'm going to give it a try!

I will check out the site, thank you :)
 
Back
Top Bottom