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Seizures with sensitivity?

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Posted 4/26/2012 12:50 PM (GMT 0)
Hello again everyone. I would like to tell you all about my day yesterday because ones like it happen pretty often and I would like to know if anybody else goes through the same. When I woke up I felt off. Not sure how to explain that. Then my family and I went to visit my sister. In the car I started getting very sensitive...to lights and touch but ESPECIALLY sound. We got to my sister's and I was ok just very restless, coulldn't sit down and I still felt off in my brain. Sounds like I'm saying I'm crazy...but its like my thought processes change. Then back in the car to go home and the sensitivity to smell and sound got extreme. Then I freeze. No movement or sound. Yesterday I was putting food in my mouth when it happened so my hand was in mid air. Thankfully my husband realized and came to hold on to me so that when the jerking starting I wouldn't hurt myself or anything. When it happens I hear people ask questions (like they're in the distance) but I can never make myself answer or talk. Then my muscles start jerking. Many times my head throws back and I hit it...which is why my husband holds on to me. Its terrifying. I can't control my body...make it talk or stop jerking...I hate it. I just sob while its happening (and usually awhile after) because its so scary and embarrassing. Many medical professionals have thought it may be seizures but I've yet to get a diagnosis. I don't have the money for an EEG yet (stupid disability) but these episodes are driving me crazy and absolutely wear me out. Does anyone experience this? Is it connected to Fibro? Is sensitivity a big issue for anyone? Any comments would be so helpful!
Posted 4/26/2012 2:11 PM (GMT 0)
Kagendo- I suffer from seizures. There are different kinds of seizures also. I have had 4 grandmals so far. They ordered EEG on me and always showed normal. The EEG were always done few days later. I lost conscience and I was taken to the hospital by albulance. It does sound like seizures. I get very senstive to noise when my seizure activity is going on. I take depokote for my seizures. Seizures meds are no fun to be on, but it might keep yo safe and alive. After having a seizure they did a brain scan and my brain was swelling. Have you seen a neurologist or had a scan on your head? Medication can cause seizures very easily. Mine started out related to medications and turned into epilepsy. We have a hospital in our town that is gov. funded. I get my test done there because they will help you out financially, even if your middle class income. They have hardship forms to fill out and you can work out very small payment plans.
Posted 4/26/2012 4:48 PM (GMT 0)
Hi, Kagendo...my daughter has Epilepsy. This subject is front and center for me right now, because her last Grand Mal was just a week ago. She has had 4 of those, and maybe smaller ones inbetween., where she brushes her hand across her forehead, without doing it consciously - always in the sunlight. She also gets the feelings you describe (feeling "off," extreme sensitivity to light, not being able to react to what people say) without actually having a full-blown seizure.

She's been on meds for it since her first seizure at age 14 (8 years.) These days, they are definitely alcohol-related.

The sooner you can get an EEG, the better. You need to know what's going on. Guess I don't need to tell you that! :( I feel for you, it's such a hard thing to go through, and so scary.

Another thought - do you get migraines? My daughter and I both do, and we were told that seizures and migraines were part of the same disorder, especially if you get an aura with the migraine. I also have weird reactions and sensitivities to lights, sounds, movements, and smells.

Debbie
Posted 4/26/2012 9:21 PM (GMT 0)
YES, I get migraines!! They are awful and probably 5 times a week. And they can last 48 hours with no relief if I don't have meds. I'm young so its been very difficult to get doctors to prescribe me the meds I need and the amount I need. I get extremely sensitive to everything and the pain is horrendous on the left side of my neck and head. And before my seizures or whatever it is...its almost like I have superpowers. That sounds silly. But I can hear what no one else can, smell stuff 3 rooms over or I can tell what someone had for breakfast and lights are just awful. Especially in the car when the light from the sun blinks through the trees. I've blacked out a few times. Unconscience once. I thought it lasted a minute and my husband said it was about 15 minuted and the worst I'd had. I strain a lot and my hubby has to keep telling me to breath. Its so hard to breath. One time it happened when I was in a bubble bath and I hit my head on our cement wall and had a nice goose egg. My hubby jumped in the tub fully clothed to keep my head above water. If I had to say something sets it off though...I'd definitely say a sudden loud noise will do it if I'm already feeling off.

And what were you saying about alcohol? If a doctor hasn't given me Xanax or Valium to stop these, I have a glass of wine to relax because it feels like my brain is going 100 miles an hour without me. But you think that makes it worse?
Posted 4/27/2012 2:56 AM (GMT 0)
Kagendo make sure you don't takes baths or swim by yourself. This is what my Dr. told me. I guess I could take a bath if I was supervised. I am sure my husband wouldn't mind to watch or help. Lol
Posted 4/27/2012 4:03 AM (GMT 0)
Kagendo,

I don't want to make a guess about what's going on with you...I was just saying that in my daughter's case, drinking too much alcohol is a trigger for seizures. Everyone is different, so with something this serious, I hope you're under a good doctor's care, one who knows your history, how you react to different meds, etc.

The strange thing is, my daughter's migraines pretty much stopped about the time she had her first seizure, when she was 14. Now she only occasionally gets one, and it's much milder. The same with me, but that is more easily explainable, since I've gone through Menopause.

Debbie
Posted 4/27/2012 5:51 PM (GMT 0)
Actually, I'm not under any doctors' supervision or care. I went to a great Fibro clinic for a year in Atlanta...but after that contract was up, my parents were broke and I was married and broke. Then I bobbed back and forth to low income clinics just trying to get prescriptions refilled. Obviously, that hasn't been working well. My meds took up all of our money so my hubby and I had to move back home and are now living in my parents camper in their backyard. He's still job hunting. Applied at probably 30 places and no call backs. He's also trying to finish school. And I don't have disability...or any kind of benefits. Just food stamps. So, we are pretty stuck. I don't say all of that for pity. God has blessed me with a great man and very generous parents who love me. I say all that because maybe some of you have gone through that and have some advice or encouragement. I won't be prideful and pretend like I don't need it.

Kagendo
Posted 4/27/2012 6:28 PM (GMT 0)
That's got to be tough. It's such a hard job market out there today, not like when I was young (if we wanted a job, we could always find one.) But I'm very glad that you have an understanding husband and parents. Families are the most important thing in life, I think.

I had wonderful parents, too. They're gone now, but what they gave me can never be taken away...understanding, caring, unconditional love. My hubby is a good guy, too, but not the most demonstrative in the world! ;) We are pinching pennies these days, too, so I hear you....

It's a sad commentary on our healthcare system that we have to be afraid of getting sick. We have insurance, which we pay through the nose for, and the medical bills are still almost breaking us! Something's very wrong here.

Debbie
Posted 4/27/2012 6:32 PM (GMT 0)
I totally agree. The economy is a mess. And the people who need help the most seem to be getting the least. Or perhaps thats just how it is in my world at the moment. Just can't seem to catch a break.
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