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Thread: Living Life with Epilepsy

  1. #26
    Member Punkrockerchick's Avatar
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    I am so sorry to here that. yes seizure can be caused by drinking. so sad because they don't tell people that they can develop that.
    Quote Originally Posted by kathystaind View Post
    My 23 year old nephew has started having seizure recently, after trying to stop drinking. If he goes up to 3 days without drinking he starts seizures. Its really kinda sad that he has created this problem due to drinking according to the doctors.

  2. #27
    Member Punkrockerchick's Avatar
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    I am so sorry to here that! its scary that she doesn't ware a helmet people should always ware one while riding not just because they have a illness. cant she get into trouble for not waring a helmet i know here in ny you can. im sorry you and your family are going through this
    Quote Originally Posted by leapfreak View Post
    To be honest we aren't really on speaking terms. The only time we speak is when forced to by our parents and that is pretty rare. My mum keeps me up to date on how she is but she lies to them too so they often don't know what's going on either.

    No she doesn't wear a helmet. I'm pretty sure she thinks she'd look stupid in one

  3. #28
    Senior Member leapfreak's Avatar
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    Quote Originally Posted by Punkrockerchick View Post
    I am so sorry to here that! its scary that she doesn't ware a helmet people should always ware one while riding not just because they have a illness. cant she get into trouble for not waring a helmet i know here in ny you can. im sorry you and your family are going through this
    I don't think it's illegal to not wear a helmet here. I think it's personal choice.

  4. #29
    Senior Member morbidT's Avatar
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    Quote Originally Posted by Punkrockerchick View Post
    Yes about 20 mins I have gone to the hospital but due to a TBI and two strokes that I suffered as a young child I have no brain active on my left side, The hospital say if it lasts more than four hours to go there. So I was just started on the med i listed in another post on here but there not helping much i dont see any changes.
    This is soooooo concerning because most people stop breathing during a seizure because of the muscle retractions. I stop breathing, according to witnesses, and I don't have Grand Mals. I feel for you. I think it's crazy that your health practitioners tell you that 20 minute seizures are ok and 4 hour seizures are hospital worthy. Despite the strokes, TBI, and other medical problems you may have, a 20 minute seizure is worrisome.

    From the Epilepsy Foundation website:

    "Unless your doctor has advised otherwise, a seizure in a child with epilepsy that ends after a couple of minutes does not usually require a trip to the emergency room.

    However, if it lasts more than 5 minutes without any sign of slowing down, is unusual in some way, or if a child has trouble breathing afterwards, appears to be injured or in pain, or recovery is different from usual, call 911 for emergency help."

    Again:

    "If you have no specific directions from the doctor, call for emergency aid if the seizure continues for more than 5 minutes and shows no sign of slowing down, or if another seizure begins shortly afterwards."

    http://www.epilepsyfoundation.org/ab...pilepticus.cfm

    I think you need a new healthcare team. The website really only discusses children with epilepsy, but the patient management is the same. I hope things work out for you, and soon!

  5. #30
    Member Punkrockerchick's Avatar
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    As i child i would go to the hospital wehn they would last that long but the seizure doctor said if they last for more that 1 to 4 hours to go to the hospital, like today i have had no seizure and im okay. he has been playing with the levels of the meds and they say it does cause increased seizures but when they last that long for more than 10 mins they start to slow down and im back to normal. but i see him this month i am going to be talking with him about a medician you take to slow them down when you go into one. its a nasal spray
    Quote Originally Posted by morbidT View Post
    This is soooooo concerning because most people stop breathing during a seizure because of the muscle retractions. I stop breathing, according to witnesses, and I don't have Grand Mals. I feel for you. I think it's crazy that your health practitioners tell you that 20 minute seizures are ok and 4 hour seizures are hospital worthy. Despite the strokes, TBI, and other medical problems you may have, a 20 minute seizure is worrisome.

    From the Epilepsy Foundation website:

    "Unless your doctor has advised otherwise, a seizure in a child with epilepsy that ends after a couple of minutes does not usually require a trip to the emergency room.

    However, if it lasts more than 5 minutes without any sign of slowing down, is unusual in some way, or if a child has trouble breathing afterwards, appears to be injured or in pain, or recovery is different from usual, call 911 for emergency help."

    Again:

    "If you have no specific directions from the doctor, call for emergency aid if the seizure continues for more than 5 minutes and shows no sign of slowing down, or if another seizure begins shortly afterwards."

    http://www.epilepsyfoundation.org/ab...pilepticus.cfm

    I think you need a new healthcare team. The website really only discusses children with epilepsy, but the patient management is the same. I hope things work out for you, and soon!

  6. #31
    Senior Member morbidT's Avatar
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    Quote Originally Posted by Punkrockerchick View Post
    As i child i would go to the hospital wehn they would last that long but the seizure doctor said if they last for more that 1 to 4 hours to go to the hospital, like today i have had no seizure and im okay. he has been playing with the levels of the meds and they say it does cause increased seizures but when they last that long for more than 10 mins they start to slow down and im back to normal. but i see him this month i am going to be talking with him about a medician you take to slow them down when you go into one. its a nasal spray
    I really feel for you. I hope it works out at the doc appt.

  7. #32
    Senior Member leapfreak's Avatar
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    Quote Originally Posted by Punkrockerchick View Post
    As i child i would go to the hospital wehn they would last that long but the seizure doctor said if they last for more that 1 to 4 hours to go to the hospital, like today i have had no seizure and im okay. he has been playing with the levels of the meds and they say it does cause increased seizures but when they last that long for more than 10 mins they start to slow down and im back to normal. but i see him this month i am going to be talking with him about a medician you take to slow them down when you go into one. its a nasal spray
    I hope they can sort things out for you

  8. #33
    Member Punkrockerchick's Avatar
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    Thank You hugs=)
    Quote Originally Posted by morbidT View Post
    I really feel for you. I hope it works out at the doc appt.

  9. #34
    Member Punkrockerchick's Avatar
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    will update when i go
    Quote Originally Posted by morbidT View Post
    I really feel for you. I hope it works out at the doc appt.

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    Someone left me reputation asking me who my friend was. I'm certain that her mother had the article removed so I'd rather not bring it up again. Sorry if that's lame.

  11. #36
    Member Punkrockerchick's Avatar
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    Well update I have gone to the seizure doctor and he has increased all my meds and added another one but on a bad note i have received bad news regrading my kidney i was told I have RTA type 1 &2 which is too much acid in my blood and my kidneys cant filter it it causes kidney stones electorate imbalance, poor kidney function and total renal failure so they will be putting me on meds to try and correct it but the downfall is my insurance does not cover it at all and it will cost $225.00 a month not a happy camper at all :(

  12. #37
    Senior Member morbidT's Avatar
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    Check with the medication manufacturer. There are programs available to help with costs that are not paid for by insurance. You can still have insurance and be eligible for assistance. Good luck to you!

  13. #38
    Member Punkrockerchick's Avatar
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    thanks :)
    Quote Originally Posted by morbidT View Post
    Check with the medication manufacturer. There are programs available to help with costs that are not paid for by insurance. You can still have insurance and be eligible for assistance. Good luck to you!

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