I'm back ! and Epilepsy question
#360263 - 08/12/10 12:31 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Hey everyone! I'm back today and surfing the net for info about epilepsy... does anyone have knowledge of the subject?  I've had an undiagnosed seizure problem since I was 1.
My crazy symptoms: I have a seizure when I'm around strobe lights or smell something pungent like rubbing alcohol or ammonia (hair coloring, cleaning fluid). If I'm dehydrated or have caffeine, I'm more likely to seize.
I black out during my seizures and don't breathe. I wake up hyperventilating.
Does anyone know what this is?? All my EKGs and EEGs are normal, my MRIs don't have anything abnormal either.
~nelly~  
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Oh, and also this
#360264 - 08/12/10 12:42 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I should mention my seizures involve me falling to the ground and convulsing, my eyes rolling back, my hands cupping at my chest and my back arching.
I'm told they're quite dramatic-- I take people's word for it as I don't remember anything.
And also I don't get phantom smells, mouth foaming or deja vu or jamais vu. I just get dizzy and seize. That night I'll sleep like 20 hours, which i'm told is classic post-seizure behavior.
Anything? Is this epilepsy??
~nelly~
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grand mal
#360270 - 08/12/10 06:40 PM
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Double J
Reged: 03/09/06
Posts: 900
Loc: High Rocky Mountains ibs-d
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Nelly it's always good to see you post ...
Sounds like a grand mal seizure. Are you taking any medication for them? And nothing shows on any scans?
Who have you seen ... a neurologist?
My last seizure was Feb 1972. Controlled by taking Phenytoin.
Just like IBS ... not the end of the world if you take care of yourself.
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 Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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Re: grand mal
#360273 - 08/12/10 06:56 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Hey Double J! Nice to see you!  Thanks so much for your reply, I was feeling very alone. No I'm not taking any medicine for my seizures... I've seen many neurologists over the years, but all my scans were negative my whole life. Story of my life with IBS too!!
My last seizure was in '95. The description of the grand mal seizure is about the same-- I've never lost control of my bladder tho, and that's what they always ask me in the hospital right before they tell me they're not going to give me medication.
I have been having pre-seizure activity in the last year... I make myself lie down and go to sleep and when I wake up it goes away... It's happened 2ce in the last year and I don't know why...
What are the side effects of the medicine you take, and does insurance cover it? Thanks so much for the support!
~nelly~
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Re: grand mal
#360274 - 08/12/10 09:47 PM
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Double J
Reged: 03/09/06
Posts: 900
Loc: High Rocky Mountains ibs-d
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Phenytoin has many side effects but the ones that have affected me the most are osteomalacia and osteoporosis. I've been told that I have bones of an old woman, and don't fall (so what … I'm an old man!). And my gums have become softer. But it certainly has been better than bouncing off the ground for 40 years.
Although my seizures are service related I'm lucky to have private insurance that pays most of the bills, including medication. Most of the VA clinics I've been to are not competent.
Nelly … I would think that a doctor would prescribe something as a preventive measure for you. Certainly I can't see the big medical picture, but I don't understand why they don't. I know that there is concern about long time use of anticonvulsant medication, but it's still better then the concrete sidewalk, or having an accident with a motor vehicle.
It's good that you have "pre-seizure activity"... a warning.
During this time have you been to a doctor?
Possibly when you are having "pre-seizure activity" they could find something.
We are always … always wishing you the very best.
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Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow”. Mary Anne Radmacher
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I started having grand mal seizures when I was a pre-teen. I haven't had one in around thirty years (I'm 62). My symtoms were about the same. Strobe lights will set one off. I had one once while riding in a car on a sunny day and the flickering of the sun through the trees triggered one.
I am on Dilantin and have been since I was diagnosed. BTW... old time family Dr. that came to the house in the middle of the night the first time I had one diagnosed it. I had a tiny scar on my brain. Last time I had an EEG they didn't see anything.
It was pretty bad being a kid in a tiny town where everybody knows everything, but things are different now. Much more is known and anti-seizure drugs really do work.. Find the right Doctor and get meds.
I'm assuming you don't drink too much because of the IBS. Drinking isn't the best idea for Epilepsy.
Take care....
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Carol
nós somos o que nós somos e o descanso é merda
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Thank you
#360293 - 08/13/10 02:02 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Thank you so much for your kind words-- I really needed them today. I know what you mean about VA hospitals, and without belaboring it, it's very good that you have private insurance and that you have better options for your treatment!
Oftentimes, people don't believe I have seizures until they see one. I've been with my BF for 14 years and he doesn't believe me. I told a school nurse in elementary school I was going to have one over and over one morning... The last thing I remember before blacking out was her scolding, "No, you're not!" and I hit the floor. She was VERY NICE to me after that!
I had one in the emergency room once. They didn't believe I was going to have one either, but the doctor had a nurse hold my hand anyway while he stitched up my leg. While I was out, evidently my eyes were open. I burned my eyes on the lights because those people didn't have the sense to close them. Now I tell people, "If I go out, PLEASE CLOSE MY EYES if they're open."
I think I should have some medicine, but no doctor has ever given me anything when I asked if there was something I could take. It's good I have warning signs, but I've had trouble interpreting them. I don't know if I'm going to have a seizure in 1 minute or 1 hour ...unfortunately, I'm worried about driving to a doctor and seizing at 55 mph. It's already almost happened once.
I have a checkup in a few weeks so I'll ask my doctor about the different meds. I'm going to do some Internet research now first! 
~nelly~
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Re: grand mal
#360296 - 08/13/10 02:24 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Wow, I've almost had one in a car too for the same reason, fast tree shadows moving over the car.
Also what gets me is a light shining through a ceiling fan... in a restaurant making flashes on the table, and even in my doctor's waiting room. (?!) Why people don't have the good sense to install those stupid lights under the fan is beyond me. I just turn those fans off-- I'm not even polite about it anymore. I used to apologize to the people around me, but I guess it's more like a pet peeve now. Sigh.
Seeing Saving Private Ryan sent me running for the door, stranding my date. When I came back, a man in the theater had passed out and they had to stop the movie. Later, they issued a warning to people with seizure disorders that the movie had flashing lights ...I think this was a huge oversight because I know there's a computer program broadcasters can use to screen out harmful flashes on TV shows.
Thanks for the information about your medicine! I'm going to research it to see if it's something I could take. Best,
~nelly~
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