Can this be me?

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henhouse

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Hi! My name is Bill. Age, 52. Married, two kids (9 and 11) and shaggy dog (Elvis). Seizures began almost ten year ago. Partial complex. I understand I have "kindling epilepsy". Until recently, I had seizures every 4 - 6 weeks. Typically 45 - 60 minutes apart for 6 to 8 hours. They have evolved over time, up and down in severity with different manifestations. How did they start? As far as I am concerned: I have asthma.

In October of 1998 I had a "prednisone burst" prescribed, 2 meds and 2 inhalators. I suspect I accidentally OD'd on an inhalator. Seizures was a listed side-effect of OD on one of them. I went to see my intern about six months later because after I had these not unpleasant "spells" I could not remember simple things, such as my dad's phone number or where the on button was on my computer. I was able to re-trace when I had my "spells", e.g. the night I was out to dinner with the guys - so I was able to see the 4 - 6 week pattern. Coincidentally, at the same time as the prednisone burst I began getting allergy shots, every 4 - 6 weeks.

Sounds simple, huh? But the allergy shots and the seizures didn't otherwise have a connection, e.g. it wasn't as though I would have a sezure 14 days after every allergy shot. And my allergist had me skip an allergy shot and I had a seizure anyway. I have never had control with medication. I started on Tegrotol then added dilantin. My seizures got worse over time. Eventually I went to lamicatal. For about six years I faithfully took my pesribed medications. Then, when I thought I was seeing some improvement, I went off my meds for one wonderful month.

After about four weeks I confided in my wife. On the 42nd day (6 weeks) I had severe seizures, I bit my tongue, I was a bloody mess. The paramedics asked my wife if I was taking my meds. She said "yes", so they pumped me full of lamictal. 3 and 1/2 days later I came out of the coma!!! Something good did come out of it. I had been taking sleeping pills, temazepan. I had tried to take one every 7 - 10 days. Then I learned I could take 1 - 3 every night. I have taken 1 a night ever since. Afterward I went on lamicatal and keppra. I had nine months of control, but at the doseage I couldn't function, e.g. to work. So the keppra was removed and the seizures returned. There is a connection with my seizures and my sleep. However, I could have stayed up all night for 4 weeks, no problem.

Between 4 to 6 weeks, big problem. My previous sleep pattern was that I would fall asleep no problem, then wake up after an hour and a half or so, and be awake for a couple of hours. The sleeping pills break that pattern. There have been dramatic changes in my work and play; but I (Pollyanna now speaking) would say they balance out EXCEPT for the d$#@&d meds!!! Now I take lamicatal 400 per day. Pretty much every time, after 4 weeks I think I am cured. After July 07, I had only seizure, not a bunch on one day. Then I had one three weeks apart. Two weeks ago I had them in my sleep (first time).

Also, I think I am feeling warnings a couple of days before. Depending on the severity, it can take me 4 - 5 days to get back to being mentally normal, about a 20% improvment each day.

Well, if you have read this far, I look forward to meeting you. Bill
 
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Well Hello there Bill!

Nice to meet you! The prednasone you were taking was for asthma, how much was the dosage? I take it now about 10mg in the am for RA. Can't get the flares to stop, always hurting some damn place or another.

I've been sezure free for 2 1/2 years and off all AEDS for 14 months. Mine is idiopathic that began suddenly at age 47. It's been a wild adventure!

I think you'll like it here, there is a slew of wonderful people from evey aspect of Epilepsy so our experiances are broad-reaching.
 
:hello: Bill

Welcome to CWE! Hope you didn't
mind me editing your post a little
bit to space it out for people to be
able to read it easier. Sorry you had
to undergo all of those harrowing
experiences!

But like Birdy posted - you'll find
a lot of friendly folks here who have
all different experiences and degrees
and angles and so on!

You'll love it here!
 
Hi Bill, welcome to the forum. :hello:

There is a ton of information here in the forum about the realtionship of seizures and sleep, sleep apnea, seratonin, 5-HTP, etc. A good place to start reading is the best threads index.

Make yourself at home here. :)
 
Hey Bill -
sounds like you have a regular chemical factory going on there.
Have you ever seen any info on how diet can play a part in all of this? Even more so when you went 40+ yrs without.
What was working then and isn't anymore?
 
Hello Bill!...

...work that sleep man...I found out I had sleep apnea. Made a huge diff.

Also, RELAX...best you can anyways....it'll help more than anything else!

Good Luck!
:rock:
 
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