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Old 06-17-2002, 08:16 PM   #1
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mermaid78 HB User
Post In need of some info

Hi Everyone!!! My husband just got diagnosed with Epilepsy last weekend. He is 26 and last sunday morning had his first one, It scared me to death. I had never ever seen a seizure in my life to begin with. He woke me up with a long scream into his pillow and he was all purple, at first I thought he was having a nightmare. Then he started shaking and blood was comming out of his mouth so I thought he was dead. We have a 3 yr old and an 18 month old girl, and my 3yr old saw it all because she was in bed w/ us. Anyway, the ambulance came and he got released after a CAT scan, diabetic test and some x-rays and everything was normal. Later on in the day he went to take a nap and had another one, and then a third one in the ER room of the hospital. So he stayed for a couple of days there. They did an MRI on him and that came back normal. He was born premature so the doctor said that is a possibility that he may have scaring on his brain tissue from then. And it is a mystery as to why it has happened now when he is almost 27! The doctor put him on Dilantin....and by the way all 3 seizures were grand mauls. It has been a week and no more seizures so far. How likely is it for him to have another one on this medication? Any input on any info about seizures would be helpful. This is so scary to me right now, Im sure that I will get used to it the more I learn.


 
Old 06-17-2002, 09:02 PM   #2
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Join Date: May 2001
Location: Chicago,Il
Posts: 99
pacemaker HB User
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Hi Mermaid78:
I hope you and your husband are feeling better!!!!
I had my 1st seizure at age 48 just like your
husband ,I had mine in my sleep. My Neuro Doc
dosen't know why it happened, are will it happen
again. I was on dilantin,but known I am on a different
med. I like your husband went through the same test
and they all came back normal. Most of the people
on this board are there to support one another
Keep in touch
Peace
Pacemaker

 
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Old 06-18-2002, 07:49 AM   #3
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mermaid78 HB User
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Peacemaker:
Have you had many since your first one? And...why did you have your meds switched from Dilantin? If you dont mind me asking.

 
Old 06-18-2002, 06:52 PM   #4
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Location: Chicago,Il
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pacemaker HB User
Cool

Mermaid78:
I have had a few since my 1st one. I haven't had
a seizure in about 1 1/2 yrs. I was taken off
dilantin, because it had something to do with liver
enzimes.
Peace
Pacemaker

 
Old 06-23-2002, 05:17 AM   #5
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heatherbellamy HB User
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Hi Mermaid. I hope you and your husband are doing better.
In 20 years I have had grand mal seizures only at night. We dont know why. I have a weird dream and see a bright light before I have it. The same dream for 20 years. I try to put the corner of my pillow in my mouth during the dream so I don't bite my tounge so bad.
I have other types of seizures during the day. I have a sence that these are coming on so I try to put myself in a safe place. I also dont drive when that feeling is coming on, and I wait for a few days after just to be safe.
I have 3 kids that have grown up watching me have them. (I was a single parent for 10 years) If explained, I am sure your kids will grow up to know this is just a part of who dad is. My kids know what to do, when to do it, and do it with no fear.
I was told of two ways I could have developed epilepsy, all of my doctors still to this day are quessing. My meds keep me from having grand mals on a regular basis. Like I said, I have other types of seizures, and I still have them even on meds.
I am sorry to hear about your fear, every one tells me they are scary to see. Good luck and keep us updated.


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heather

 
Old 06-24-2002, 05:29 AM   #6
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mermaid78 HB User
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think that my fear of seeing my husband (Dan) having another seizure has diminished a little. Im now just getting used to the fact that there is NOTHING that I can do to stop it, I just need to make sure that our home is safe. He had the first 3 while he was sleeping. Its just sad watching someone you love go through that, I know a grand maul isnt as bad as it looks, but its pretty tramatic to watch!!! Dan hasnt had anymore since that day he started having them, he had three the same day and no more since. He's on Dilantin and 2 weeks ago got his blood drawn to check his Dilantin level, and it was a 1, when it is supposed to be bwtn 10-20. The doctor upped his medication to taking 5, instead of 3 and today he has to get his levels checked again. I was very suprised and relieved that he didnt have one when his levels were so low!!! One thing that he will never get to do again as long as he is on anti-seizure medication is he wont be able to continue his job as a courier. The company he works for will not allow you to drive for them as long as he is on that medication, and the doctor says that it will probably be for the rest of his life. So he is going to go to school and become a computer programer which is what he has always dreamed of. Anyway, thanks for your responses! Everyone seems to be very friendly and supportive around here!!!

 
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