Never Too Late to Fight This

[bwee]

Diagnosed with "a seizure disorder" in 1980, I refused to go on medication until I absolutely had to the following year when I was hospitalized after a seizure. I could not call it "epilepsy" for 20 years; I was too embarrassed to admit it. Dilantin controlled the seizures but I would occasionally have a breakthrough seizure during the night. I was switched to Tegretol when I was diagnosed with osteoporosis and my neurologist at that time believed it was due to the Dilantin I had been on for about 18 years.
I only have nocturnal seizures since being on medication. I married in 1999 and my husband will tell me in the morning if I had a seizure during the night, usually occurring in the early morning hours. I typically will know before he tells me because of the headache, aching muscles and confusion. The more serious seizures have left me feeling out-of-touch for a week afterward. Food doesn't taste the same; I lose my appetite, sometimes have a metal taste in my mouth (blood? amalgam fillings?) I have the feeling of being outside my body watching myself. Of course, no one will understand what I'm going through so to them I just say, "Just not myself today."
I don't care for my neurologist, but I am limited in my area. However, I do have D.O. that is trying to help me with nutrition and supplements and I am reading 'Treating Epilepsy Naturally' and 'Epilepsy: A New Approach'.
I'll be 60 next year and I'm grateful after so long to have someone to 'talk to' about my epilepsy. I'm already understanding so much more about this just from reading various threads and books and have hopes of at least cutting back on meds, if not cutting out altogether. Thanks.

[Endless]

Bwee,

Welcome to CWE! There are lots of folks in here that use natural methods to try and improve their seizures. You'll have lots of company. Are you trying any of the methods or diets?

Many of us in here are unhappy with our neurologists. It's kind of a merry-go-round trying out new ones until we find one that is great.

Well, make yourself at home in here, hang out, vent, read, ask questions.... It's a great place to be, even if it is for a really stinky reason (epilepsy).

[bwee]

I've just started reading about the various diets, in particular the G.A.R.D. which seems to have helped a lot of people. I ended my nightly glass of red wine when I read this week about a woman who quit having nocturnal seizures when she quit drinking her daily glass of wine. So far, that's all I've done. I follow a very healthy lifestyle with exercise and a good diet, but I see there is a huge difference between 'good diet' and the GARD. And I've started taking a few supplements recommended by my DO, namely phosphatidylserine, methylcobalamin, and vinpocetine. I'm game for anything that will help.

[Nakamova]

Hi bwee, welcome!

I tried taking vinpocetine to see if it would help, but it was hard on the digestion, and I ended up stopping. Let me know if it works out for you.

Best,
Nakamova

[PhylisFeinerJohnson]

Hi bwee, glad that you could join us...

There's a whole section here about the GARD Diet and the Modified Atkins Diet (MAD) and look for RobiN's posts. She' the goddess of seizure control by nutrition.

[NYC Mom]

Welcome! I found this place yestersday, and am in love with it. I also took a while to accept the diagnosis as "Epilepsy" It took me about 5 years to accept it, and my first seizure was when I was 13. I started on Dilantin, and switched to Tegretol when the Dilantin was making my gums all swollen and bleeding. I am now 37 and the seizures are totally controlled by the meds.

[Cint]

Diagnosed with "a seizure disorder" in 1980, I refused to go on medication until I absolutely had to the following year when I was hospitalized after a seizure. I could not call it "epilepsy" for 20 years; I was too embarrassed to admit it.

Hi Bwee,

I had my first tonic clonic in 1980. I was hospitalized for 2 months due to 2nd and 3rd degree burns from the miserable seizure on my way out of the shower. Prior to that seizure, I had been to a dr. because of the unusual sensations I was having, not realizing I was experiencing simple partial and complex partial seizures. That fool said it was hypoglycemia and didn't even check my blood levels at the time. When I was in the hospital, the blood levels were fine, but the EEG wasn't fine. I will never go off medication because dealing with my type of seizures and being in and out of hospitals due to tonic clonic seizures and injuries isn't much fun! I'm more embarrassed when people see my arm and asked how I was burned.

I wish you success with whatever method of treatment you choose!

[RobinN]

Welcome Bwee -
My daughters quality of life plummeted at the age of 14 when she was put on anti seizure meds. I didn't accept that this was a viable answer.
Finding nutritional means to eliminate seizures, she is now remaining seizure free and med free.

[douglas]

hi there welcome to the forum.

i have had partials all my life but never knew when they were. until i had my first tonic clonic around 1998/99. was no dilatin for about 3 months then they tapered me off it. i have another tonic clonic the following year. them them put me on Dilatin for about 5 years. they took me off it. i was sezure free for about 3 years, then they put me back on meds after i have a could of tonic clonic seizures a few days in a row. been on keppra at my request for over a year now.

luckily, i have not inured myself too badly during my tonic clonic. on here to get some ideas to maybe change diets or eating habits. also i keep requesting MRIs in the hope that maybe they find something and can remove it. nothing has shown up on MRI's for over 10 years.

best of luck,