Three years since my last seizure - all ended this morning. Steroids???

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Regular Member

Date Joined May 2008
Total Posts : 61
   Posted 7/5/2008 11:39 AM (GMT -7)   
Hi All,
I am really sorry as this is a pity post, and it's long.  I am really frustrated right now and need somewhere to turn.
I had a seizure this morning, it was the first one since I started medication (Lamictal) three years ago. 
I got out of bed to answer the phone and was still tired, so I went to lay back down.  I could feel it coming on and I tried to lay really still and breathe deep, but there wasn't anything I could do. In what felt like a couple of seconds I started feeling myself drawing up. 
This was the worst one for me.  I could feel my body jerking, I could feel my mouth grinding and clenching, and I could feel the froth coming out of my mouth.  It was horrible.  My husband was with me, and I can remember the horrible look of fear on his face.  He was in tears and I think that was the worse part of it all.
With the other two, I passed out and I didn't remember anything until I woke up.  I know that the others seizures were also grand mal because people were there with me.
Well, I have ulcerative colitis as well.  It's been flaring for a good while now.  I have been seeing a new doctor who prescribed Prednisone (steroids) to try and get in under control.  When I looked on the information sheet that came with the Prednisone, I noticed seizures listed as a rare but possible side effect.  I thought about it when I read that, but then I thought, "rare."  Okay.  Stupid, stupid, stupid, stupid.
I have been taking 40 mgs of Pred, and today is my day to start weaning off 10 mgs at a time.  I want to stop them all - NOW!  But, I know if I do that my colon will flip out. 
This has me wondering.  I mean, it's been THREE years.  I was doing so well.  What if it is the steroids?  Anyway, I am calling my neurologists and my gastro doc Monday morning to try and figure something out.
Also, I watched fireworks last night.  But, if that was going to trigger a seizure, it would have happened while I was watching them, right?
Thank you all so much for your time.  Again, I am sorry this is so long and whiney!
40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night

Regular Member

Date Joined Sep 2006
Total Posts : 159
   Posted 7/6/2008 11:44 AM (GMT -7)   
You are not whiney, for feeling terrible for having a seizure after 3 years seizure free. I would be feeling upset too. The only reason that I am putting my two cents worth in here being new and all is that I take a lot of immunosupresent drugs with lupus and every once and a while they bump me up to 60 mg from my usual 5mg a day. Maybe they don't effect me because I am used to them, but pred doesn't cause seizures in high does in me, for what it is worth. I am sorry you are feeling bad right now. Monte

Veteran Member

Date Joined Jan 2006
Total Posts : 2408
   Posted 7/7/2008 12:36 AM (GMT -7)   

Hi Beth,

I dont think its whiney at all. If you have done 3 years without a sz and then suddenly it all changes, I would be annoyed as well. (Normally I would use a stronger word, but there are children on HW and I'm supposed to be setting an example!). I have to be honest and say im not sure of the effect between epilepsy and steroids, but it sounds like a big coincidence if they are not linked. Have you tried posting in the UC forum as well? The steroids may have increased your liver function which means your AED levels would drop quicker. Just a thought. Calling the doctor is definately a good idea.


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Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 7/31/2008 9:52 PM (GMT -7)   
i also HAD uc (had surgery all better now!) and strangely enough there seem to be lots of people who have both things, wonder if there is a connection?
Anyway, i am on lamictal and phenobarbital, and before i had surgery there were times when i would be on up to 100mgs of pred at a time. I never actually had a seizure from it, but i would get more confused when i was on it. So i think it could def cause that.

New Member

Date Joined Jun 2008
Total Posts : 4
   Posted 8/8/2008 2:18 PM (GMT -7)   
I had a seizure 3 years ago, was put on medication. A year went by so I stopped taking medication. Just last month in June I had a second seizure, Mind you I hadnt been on medication ,and It had been 3 years since. Never went back to the hospital. I did allot of research, and seizures are easily caused. When I had my 2nd seizure, my boyfriend decided to pop the question, of course I said yes. yay!
So I went to sleep late like at 4:30AM and woke up by 8:00am not allot of sleep and I had a seizure. I rarelly ever get enough sleep, so I dont know whats up. I went to the Dr he said it was clonic tonic epilepsy. However I dont believe tha, cause i was fine all along. Never had a seizure went to Vegas and never slept did the collage drinken and stuff and nothing. So I get engaged and I have a seizure do you think it could have been anxiety and not enough sleep?
Another thing s was I found my old bottle of medication lemictol. I had my first seizure 3 years ago in the same mont. isn't that I ronic? June of 2005 and then a recurring of June 2008 has this happen to anyone, do you think its from anxiety or asomething?

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