Nothing after 18 years - Epilepsy Message Board

hypobug · 09-02-2005, 12:23 AM

Hi,

I have had epilepsy for about 18 years.
When it first started I would feel nausea and dizzyness. I would get so bad I would crawl to my bed. When I would wake up from what I thought was a deep sleep I would feel awful..extream weakness and fear.
I went to the doctor a couple of times only to be told it was all in my head.

One night my husband woke up to find me having a grand mal seizure.
He rushed me to the ER and I was hospitalized and finaly got some tests run.
Nothing was found. I was told I had a SEIZURE DISORDER. I was put on Dilantin. I did pretty well on that..had some petite mals during the day with occaisional grand mals in my sleep.
A few years ago my seizures seemed to stop (not counting an occasional petite mal). I started having stomache-chest pain. When I went to the Doctor and he did labs he found my liver was irritated, an ulltrasound showed it to be slightly enlarged.
I stopped taking my meds. I have not had any grand mal seizures (that I know of).
All that brings me to the present. I was recently diagnosed with hypothyroidism.
I have no idea how long I have had it. It can be drug induced so I wonder if the Dilantin did it.
Also I am having, and have for some time had random sharp pains in my head.
The did a cat scan and an eeg recently which I was told were normal.
Any thoughts?

neurowreck · 09-04-2005, 01:01 PM

Hi, I was on Dilantin (A LOT- like 700 mg/day) for quite a while, and eventually ended up with abnormal thyroid tests....when I quite taking the Dilantin, because of liver test problems, my thyroid tests went back to normal.
Now I'm on a combo of Tegretol, Klonopin, and Neurontin, and they have helped, but still have night seizures, and I'm not sure how many during the day since I live alone, but know that my auras are a weird chest feeling...so if I"m still with the program enough, I get to bed, sleep it off, and feel like a truck hit me when I wake up. i've got complex partials, and some simple partials. I've had at least one grand mal at age 16, but most of mine stay on the left side if there's any limb movement now, and it's not major movement- more twitching from what I'm told- right side stays limp. Seizures are weird- they can come and go as they want....just important to avoid the known triggers, and take meds as directed- not much else you can do.

hypobug · 09-04-2005, 01:35 PM

Hi, Thanks for responding. I took dilantin for around 18 years. I have been off of it for around 3/12 years. I just got the diagnosis of hypothyroidism a month ago.
I am having those random sharp pains in my head again. Do you get those?
I understand the "hit by a truck" feeling. It is hard to describe how you feel after a seizure. I said weakness. Ha.. weak does not realy cover it. More like..near death,barely there and very very afraid.
I am having and have had fogginess and forgetfulness. That can be caused by the hypothyroidism, however it has been going on for quite a while. One Dr said "oh you are just noticing it more,it is nothing".
I don't quite understand why they can not find anything. I had a lot of grand mal seizures for years.
I would like to know if any one else has those sharp pains in their head and if they know the possible cause.

Guess I am sick and tired of being sick and tired lol. I am also tired of feeling like an idiot because of forgetfulness.

blueowl · 09-04-2005, 01:51 PM

I had a seizure this past monday that I am still trying to recover mentally from. I have had 3 seizures in the past four months, 7 years prior to that. My sense of smell has heightened and my tolerance for meat is lower. I eat because I know I need to but my body is not feeling the hunger. I have also been experiencing nausea in the a.m. and after I take my meds, even on full stomach. The more I read I am finding this to be the experience of many, not just me but I have to say the feeling of non-attachment is greater this time then in the past. The seizure happened monday, tuesday and wednesday were a blur and thursday is remembered only because I worked. Again, slower time coming back. Even in writing this I am not sure what I am trying to say but feel the need to talk.

hypobug · 09-04-2005, 02:21 PM

I am so sorry. I understand. I lost my appeitite and got down to 80 lbs. one time.
Now I am over weight.
I went back to school " at 42 yrs old" It was hard, but I graduated with honors. Now, 4 years later, my forgetfulness, fogginess and depresion are so bad it makes doing that kind of work impossible. Rotten!
I don't know what to do. Give up the dream? Go to work at a fast food place? I need the money. I feel like such a failure.
I also need to talk.