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acoustix

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Hello. Name's Mike and I'm 20. I've had seizures now for... around 8 years. They started out as these little strange staring spells that I'd get. I'd be talking, or walking, or sitting, doing whatever and all of a sudden, I'd black out for 5-6 seconds and then just snap back into reality like nothing at all happened (as I've grown used to them, I can now recognize that "fuzzy" feeling afterwards).

As a child, my mother wanted to take me to get them checked out and I begged her not to. I remember crying because I remember hearing that they'd have to do an MRI and I remember seeing my grandfather in one and not wanting to do it.
They eventually became troublesome when I was playing baseball (I was an excellent catcher) and I missed a ball thrown because of one of these "staring spells". I remember waking up, and having everyone around me screaming cause the kid was rounding second base and heading for third so I turned and grabbed the ball and threw to second, even though he was heading for third (this is the "fuzziness").

First time I had a real serious seizure, I was outside playing with waterballoons (we made a terrible mess... neighborhood was covered in rubber) and the last time I remember was talking to someone about Saturday night live. Later I was informed that it was as if I just forgot what I was talking about, looked straight up at the sun, and fell down and started shaking. My Father, who was watching me and my little brother at the time (I'll never forget seeing my brother in tears and being so scared for me), rushed out and carried me in and took me to the hospital a few towns over.

I don't really remember much from that first hospital, I do remember being taken to Boston Medical though and spending the entire day there. The EEG's, the MRI's (that dye that they put into your veins BURNS man...), the repetitious questions, it was enough to make me want to forget the entire experience.

I've had seizures since that day (I was about 13 when that first one happened) and I've been on a couple different medications... Depakote to start, Dilantin, Lamictal, and currently Depakote ER (1,000mg a day). Most recent seizure was a few days before Christmas (my brother pulled me out of the shower after hearing a loud bang). My license is currently revoked after having a seizure behind the wheel of my car (I loved that car...) and crashing into a guard rail on Route 3 on the way to see my dad, older brother and little niece (I'm still alive!). I still have those staring spells even though I'm on medication (medication used to control it, but I believe my body chemistry is changing and I need different meds or higher dosages), and I still have seizures from time to time with or without the meds (more often without the meds than with).

So, there I am in a nutshell. I know, long-winded and terribly graphic but, I've never vented my feelings for this annoying as hell disorder and I felt it necessary. Cheers. (I also apologize for the wall of text :P)
 
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Hi Mike

Welcome to CWE

You have come to the right place to vent about E, or just to chill and hang out. I have made this site my second home, everybody here understands and supports each other.

The staring spells that you have, sounds similar to mine, I have absence seizures, on average I can have up to 50 a day, mine can last anywhere from 2-20 seconds-ish.

I have been through the same thing whilst playing sports, for me it was field hockey and football (soccer). I love sports but I always end up embarrassing myself as my mind is about 30 seconds behind the rest of the game.

Take care

The Crazy Monkey
 
Absence seizures you say huh? I'm in the process of retrieving my medical records... I can't wait to see what they say.
 
Hi acoustix! Welcome to CWE. :) Don't worry about the wall of text. :) You're just letting us know more about you. Now feel free to ask questions, chime in, or just vent in the padded room. Heaven knows that E is frustrating enough. :)

As for your E, have you ever tried to figure out what's triggering the seizures? If not, you might want to. Different people have different triggers. But alot of us find that not getting enough sleep, being stressed, and drinking too much caffeine are fairly common triggers. If you haven't but your interested in trying to figure out what might be triggering the seizures, you might want to start keeping a journal. Write down everything you eat and drink (when and how much), as well as how much sleep you get each night, any stress your under, any odd feeling (deja vu, odd smells or sounds, meigraines, etc..) that you have, any seizures you have as well as how long they last and what you were doing just prior to it. Some people find that specific foods or lights can trigger their seizures. If you can avoid your triggers, you might be able to lower the amount of meds necessary to treat it. Also, check out the alternatives treatments thread. It's worth a good read.

As for your meds, sounds like your seizures got bad when you were going through puberty. Now, my neurologist told me to be careful with weight shifts. He said the more I weighed the more meds I would have to take. Also, you might want to see if any of your meds have interactions with anything that you normally use. For example, one med, can't remember which one, does not get absorbed as well if the person taking it eats grapefruits or drinks grapefruit juice. Also, if it's been awhile since your last blood serum level check, you might want to go in for an appointment. It sounds as though your levels might be off, but it's hard to say for certain. Many people in their 20's don't get enough sleep or drink way too much caffeine. ( I was the poster child for both...:) 9 cops of coffee a day as well as trying to get by on only 4 hours of sleep. Not a good combo. ) Anyway, I hope this helped!
 
Welcome Acoustix :hello: Don't feel bad about the long intro. I think my intro may have been even longer. I've found that it really helps just to let it all out and this is a great place to do that.

As Skillefer suggested, there can be many outside triggers for seizures. I'm currently controlling my son's through food and nutrition. CWE has a lot of information for alternatives that may help your meds work even better. Some alternatives could potentially help you lower the dosages.

Make yourself at home and take a look around :)
 
Hi, Hello

and how do you do? It's very nice to meet you, Acoustix! Welcome to CWE!!!

I'm sure you will like it here, we are quite the friendly bunch. Mr B has built us an AWESOME home here. Plenty of nooks and crannies to check out. Feel free to check them out...

And don't worry about the long intro, trust me, there are others that have been longer...and it's not a problem at all...
 
Welcome Acoustix.
Thanks for the intro. I hope you settle in easily here.
Loads of good info here. Hope it helps.
 
Glad you are here Acoustix. It helps to have a place where you can talk about everything you are feeling and knowing there are people who understand. Yes, "staring spells" are absence seizures.
 
Hi and welcome* You will have great company here.

joan*
 
Hi Mike, welcome to the forum. :hello:
 
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