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Brainskip
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Thank you for the welcome Birdbomb and Bernard, and so good to hear we are JRun free here.
So a little bit about myself lol, Im 35 and have had E since I was around 2 as far as smaller siezures go, then around 6 or 7 I had my first grandmal, was in 2nd grade. It wasnt until I was around 16ish I started having really bad clusters of grandmals. Since then have never gone longer then 6 months without having them.
The last 10 years or so they have gotten worse having snapped my back on 2 different sets of clusters. The first time I broke it, it was pretty bad, I laid here for 6 days before I could get up and go to an emergency room. The people in the ER couldnt believe I had walked in there. I lost an inch and a half in height and broke my t5, t6, t7 and t8 vertabra's. I can still move but everytime I breath in or out to deep or sneeze or caugh it feels like someone is twisting a 3 inch round pipe sticking through me from between my shoulders right out the chest.
When I have clusters of grandmals I can loose anywhere from a week to over a month of memory, and can have anywhere from 10 to 30 or more grandmals in a row lasting for a very long time. I have had this go on for up to 3 days solid before, a friend of mine video tapped me going in and out for 6 hours soild one time. I personally had never seen one before until I saw myself like that, freakiest thing i have ever seen, eyes wide open and cant recall none of it.
I guess thats a lil bit about myself. I really wanted to say thanks Bernard for sharing this site with us, it really is a cool setup.
So a little bit about myself lol, Im 35 and have had E since I was around 2 as far as smaller siezures go, then around 6 or 7 I had my first grandmal, was in 2nd grade. It wasnt until I was around 16ish I started having really bad clusters of grandmals. Since then have never gone longer then 6 months without having them.
The last 10 years or so they have gotten worse having snapped my back on 2 different sets of clusters. The first time I broke it, it was pretty bad, I laid here for 6 days before I could get up and go to an emergency room. The people in the ER couldnt believe I had walked in there. I lost an inch and a half in height and broke my t5, t6, t7 and t8 vertabra's. I can still move but everytime I breath in or out to deep or sneeze or caugh it feels like someone is twisting a 3 inch round pipe sticking through me from between my shoulders right out the chest.
When I have clusters of grandmals I can loose anywhere from a week to over a month of memory, and can have anywhere from 10 to 30 or more grandmals in a row lasting for a very long time. I have had this go on for up to 3 days solid before, a friend of mine video tapped me going in and out for 6 hours soild one time. I personally had never seen one before until I saw myself like that, freakiest thing i have ever seen, eyes wide open and cant recall none of it.
I guess thats a lil bit about myself. I really wanted to say thanks Bernard for sharing this site with us, it really is a cool setup.
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Oh my, I hope you instruct your friends to call 911 instead of just watching you seize over and over for hours with a camera in their hands! 6 hours straight and you stopped? You are indeed lucky.
Stacy (my wife) has also had similar effects on her memory from seizure clusters. Her memory went from awesome (post EEG neurofeedback and during a 4 year seizure free period) to abysmal (couldn't remember our childrens' names while having TCs once a week and multiple drop attacks and myoclonic jerks in between) to pretty much normal again (seizure clusters every month or two currently). I think the longer you go without having a seizure, the more the brain's memory recall system improves. Your memories are still there. It's just accessing them that is not working properly.
Stacy (my wife) has also had similar effects on her memory from seizure clusters. Her memory went from awesome (post EEG neurofeedback and during a 4 year seizure free period) to abysmal (couldn't remember our childrens' names while having TCs once a week and multiple drop attacks and myoclonic jerks in between) to pretty much normal again (seizure clusters every month or two currently). I think the longer you go without having a seizure, the more the brain's memory recall system improves. Your memories are still there. It's just accessing them that is not working properly.
Brainskip
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Actually he just set the camara up on a tripod and let me go. He had called my mom and she told him that it was just normal for me to go like that. I use to have ambulance rides alot but have pretty much stopped going like that if at all possible. On several different occasions in at least 2 different states now they have taken me to emergency rooms. The doctors in 2 states have told my mom that they had never seen anyone have seizures like that, and there wasnt really alot more they could do. They have shot me up with it all and not once have they been able to stop them with any of the drugs without having a fear of killing me in an overdose.
Its kinda crazy I guess, the last eeg I had they counted 6 or 7 spikes in less then an hour. So who knows how many smaller ones Im having on a daily basis.
Also wanted to say I hope Stacy has been doing better I think I had read that she had some seizures not to long ago and had to go to the ER? I know its extremely difficult but am glad that she has someone like you around. Your caring for her is more than words can explain.
Brian
Its kinda crazy I guess, the last eeg I had they counted 6 or 7 spikes in less then an hour. So who knows how many smaller ones Im having on a daily basis.
Also wanted to say I hope Stacy has been doing better I think I had read that she had some seizures not to long ago and had to go to the ER? I know its extremely difficult but am glad that she has someone like you around. Your caring for her is more than words can explain.
Brian
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Sorry to hear that your seizures don't respond to any meds/stabilization efforts in the ER. Have you tried any of the seizure control diets?
Stacy is doing pretty well right now. She's been pretty busy lately and hasn't had much time for the forum, but she will pop in here again soon.
She's now alternating her dose of Dilantin between 300 & 400mg every other day per the hospital neuro's suggestion. She also recently started neurofeedback again. I should probably make another blog post with an update soon.
Stacy is doing pretty well right now. She's been pretty busy lately and hasn't had much time for the forum, but she will pop in here again soon.
She's now alternating her dose of Dilantin between 300 & 400mg every other day per the hospital neuro's suggestion. She also recently started neurofeedback again. I should probably make another blog post with an update soon.
POSITIVEPERSON
Playing With Angels
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HI Brain: Welcome to t he board. I have epilepsy since I am 11 yrs ,been on Aeds till 2 yrs ago when I ran out of meds and started on homeopathy. I was able to get off my last
tab of mysoline because I added on the Gard diet. Have you thought of trying homepathy
or the Gard diet to help with control your szs? Or neurofeedback?
Lots of pple on this board you can ask questions too.
Riva
tab of mysoline because I added on the Gard diet. Have you thought of trying homepathy
or the Gard diet to help with control your szs? Or neurofeedback?
Lots of pple on this board you can ask questions too.
Riva
Brainskip
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Howdy and thanks Bernard, Sharon and Riva. As far as trying any of the diets havent tried any of them yet. The Homepathy and neurofeedback I havent heard of before, so havent tried them either. I have gone through the typical meds dilantin, pheno, tegratel, topamax and a few others I cant think of right now, with no luck.
Hope yall are all doing well today and thanks for the welcomes and info.
Brian
Hope yall are all doing well today and thanks for the welcomes and info.
Brian
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You can find more info on the diets and neurofeedback in the chart linked in my signature. And here's Riva's post about homeopathy.
execwife2002
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Brian,
My son who is 19 yrs. old has had epilepsy since the age of 12 1/2. He did go 2 1/2 years without seizures. The day we moved the seizures came back. In fact the first seizure occured the first time we moved. Anyway, he has started on a gluten free diet. If you decide to try this or the GARD diet and have a WHole Foods Store near you they have a great selection of all types of things. I just did a major shopping there and couldn't believe the choices I had to pick from. In fact I ran into several people who had a family member on the GARD diet and they couldn't say enough good things about it. I believe Bernard has posted several options of different programs one could look into.
Wishng you and your girlfriend much relief.
Marian
My son who is 19 yrs. old has had epilepsy since the age of 12 1/2. He did go 2 1/2 years without seizures. The day we moved the seizures came back. In fact the first seizure occured the first time we moved. Anyway, he has started on a gluten free diet. If you decide to try this or the GARD diet and have a WHole Foods Store near you they have a great selection of all types of things. I just did a major shopping there and couldn't believe the choices I had to pick from. In fact I ran into several people who had a family member on the GARD diet and they couldn't say enough good things about it. I believe Bernard has posted several options of different programs one could look into.
Wishng you and your girlfriend much relief.
Marian
Brainskip
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Thanks for that info Marian and Robin sorry its been a few, also changed my icon for ya Drew, sorry bout that hope my new one is more fitting. I have been in and out of seizure land again or here recently and been trying to relearn a bunch of stuff about myself.
Again thanks for all the info,
Hope everyone is been doing ok
Brian
Again thanks for all the info,
Hope everyone is been doing ok
Brian
RobinN
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Glad to see you have been able to join the party again.
I am being so strict about certain food additives this month, and I see an incredible improvement. To keep the teen from roaming into bad food land, I have to be a creative chef and shopper.
I am being so strict about certain food additives this month, and I see an incredible improvement. To keep the teen from roaming into bad food land, I have to be a creative chef and shopper.
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