What lies ahead for me? - Epilepsy Message Board

f1seb · 08-30-2006, 01:22 AM

I am a 27 year old male. Healthy, at least that's what I had been told. September 2002, I suffered my 1st seizure. I spent a night in a hospital, the next day I was hooked up to an EEG and then had an MRI. The final analysis was that my brain showed after effects of a seizure on the EEG, MRI came back clean, no brain damage, blood came back clean as well. The cause of the seizure remained unexplained. I shook it off pretty easily, from the encouraging words of the doctors, chances were that this would be my 1st and last seizure of my lifetime. I truly believed in that statement, even when it wasn't a gurantee, and jumped into the next day as if nothing ever happened. I lived an uneventful life for the last 4 years until Saturday 26th of last week. I came home from work, kissed my girlfriend, and jumped into the shower. Cleaned myself up opened the shower door and reached for the towell to dry myself off. I put it over my head to start drying my hair. The next thing I remember is a place filled with strange people who knew my name and were putting a neck brace on me which I belived was purpusly choking me. I kept trying to tell them to take it off and they just kept asking me how much I weigh and if this has ever happened before. I heard somebody say 4 years ago, and then I just remember myself repeating to everybody that asked me the same thing, "4 years ago" Then I recognized my mother in tears asking me what is wrong? Strange she lives over 30 minutes drive away from me, I couldn't piece anything together. My brother was there too, that made a bit more sense since he lives about 5 minutes drive from me. Anyways when the ambulance drive was over I noticed all bunch of things connected to my arms and chest and hips, but the thing I was most greatful about was that stupid neck brace was no longer trying to choke the life out of me. My girlfriend talked to the doctors and said that I had suffered an epileptic seizure, so I'm thinking great a 2nd one, next question was from me how long was I out? She said from the time I heard the crash in the bathroom and the time the paramedics showed up and I woke up 15 minutes had passed. She asked me about other things which I had no recolection of at all, the 1st policewoman on the scene talking to me for about 9 minutes, telling me that I'm only 1 day older than she is, my girfriend accidentaly breaking the mirror in the bathroom when the 2 of them tried to lay me out flat on the floor, she said that I moved my head violenty into the direction of the sound but didn't respond to anything else. I seemed to have recovered after the arrival in the hospital quite fast, or so I thought, I had a cat scan, blood work and a chest x-ray, all of them came back clean. I was told to swallow 10 pills of Dilantin which I did and then they gave me a prescription for an entire months supply. Then I was told that since it's my 2nd seizure I might have to take that or some other medicine for the rest of my life. To me it seemed like the time I spent in the hospital was about 1 hour, I was wrong, I didnt get home till 1:30am, the seizure began around 8:30 that night. I guess my brain was playing tricks on me still. I haven't taken the medicine yet, I've been staring at that bottle for a few days. For some reason I know I'm headed for depression and I don't realy care......not realy sure how to bounce out of this one, although I know it's not my fault, and the reason behind my seizures may never be found, I just can't seem to shake the feeling of being some sort of defect. That the chances of me not having another seizure in my lifetime are still there, but knowing that I had my 2nd one in 4 years.....to me seems like there are more waiting for me down the road and if it was a bet I had to make, I'd put my chips down on more to come. Losing the ability to drive myself around and still be told to my face that I can be a happy self dependable person and nobody will treat me different seems like a story full of BS. And driving a car is not just a ways for me to go around, it's my favorite thing to do, my hobby, I dump money into my cars while people look at me and scratch their heads thinking he's lost his marbles. Now, fading away rapidly. The idea of still being a normal person but hey wait did you remember to fill your magic bottle of pills so you can remain normal, doesn't sit well with me either. I don't know, right now it sucks being me.

IJUSTWANNANO · 08-30-2006, 09:52 AM

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Travis from MN · 08-30-2006, 03:33 PM

Your system may have a close balance so your seizures seem rare from what you said; but you will need medication because you will never know when the seizure will strike.

You need to maintain a consistant level of the med in your system or you will have "peaks and valleys" of the drug causing a shock to the system by all of a sudden introducing a substance then withdrawing it (stopping). As much as it seems worthless, it is preventative to try and keep the seizures under control.

Last I knew NY was one year seizure free for driving, but there are exceptions from what I know. (you'll have to look those up) Dr's are NOT required to report seizures of patients by law in your state (some states require it).

So as for the driving game, up in my state anyway, it was 6 months seizure free. So I had to have Dr fill out the form submit it to the Department for my license when I first obtained my license (and an annual jump through the hoops as well). Basicly I was on the books from the beginning with the state. If yours are that rare I wouldn't worry about it as long as you take your meds. Your case sounds pretty stable.

Hope it keeps your seizures under control... As long as the flashing lights/flourecent lights don't cause you more problems that the EEG may have shown if they did the strobe test... you should have one less to worry about for "triggers" (causes of seizures).

Welcome to the board,
Ask if you have more questions.

--Travis

IJUSTWANNANO · 08-30-2006, 03:39 PM

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neurowreck · 08-30-2006, 09:29 PM

Yeah, with meds (and it may take trying a few out, or more than one), you can often do what you normally do- if your seizures are controlled, life goes on- but keep ID in your wallet, so if you do have a seizure somewhere, the info will be there for the ER.

Can't even count anymore how many times in the past 2 1/2 years I've been EMS'd to the ER (can't work now, but plan to go back after moving
'home')....before moving back up north, I might go over a year without seizing...I've had weird infections here, and other stuff that I didn't down south.

Keep track of the dates and times, and if someone is around, ask them to help you fill in what happened for the parts you don't remember- that can help the doc sometimes more than EEGs and MRIs. And most people don't ever know the cause of their seizures, while others have a clear cause. But eyewitness information is very helpful for the docs.

But hang in there- it's not the end of the world. At least with the meds, you can still function (once they get them right). Consider a Medicalert necklace- they fit under your shirt (some people prefer the bracelet- I don't). It will help anyone who helps you know what's going on- but you may go years without having seizures again. I did, until relocating to a different climate.