New here and Looking for support

[missapril]

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.

[epileric]

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.

[Nakamova]

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: Proactive Prescription for Epilepsy

Best,
Nakamova

[missapril]

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