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I have nocturnal seizures less than 10 times a year. I switched to zonegran 2 years ago. I am now suffering hair loss and severe weight loss. When I asked my dr about trying a med free approach his responce was "i wouldn't advise that seizues can kill you!!"
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First Helper BangBangPOW
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How much zonegran are you on???? It is known to have a appetite suppressant side effect to it..... When I was on it and topamax togethere I lost so much weight I look like ghostly.
Alot of the meds will cause you to have a hair loss problem, taking vitiamins and folic acid helps.
As for what your doc said about seizures and no meds.... There is a thing called.....
Sudden unexplained death in epilepsy (sudep)?
Sudep is a rare condition in which young or middle-aged people with epilepsy die without a clear cause. It accounts for less than 2% of deaths among people with epilepsy. The risk is about 1 in 3,000 per year for all people with epilepsy, though it can be as high as 1 in 300 for those who have frequent, uncontrollable seizures and take high doses of seizure medicines. Sudep is extremely rare in children.
I hope this anwers your questions.....
There is a wonderful web site full of info at....
Epilepsy.Com
i have learned alot from there.
Jill
Alot of the meds will cause you to have a hair loss problem, taking vitiamins and folic acid helps.
As for what your doc said about seizures and no meds.... There is a thing called.....
Sudden unexplained death in epilepsy (sudep)?
Sudep is a rare condition in which young or middle-aged people with epilepsy die without a clear cause. It accounts for less than 2% of deaths among people with epilepsy. The risk is about 1 in 3,000 per year for all people with epilepsy, though it can be as high as 1 in 300 for those who have frequent, uncontrollable seizures and take high doses of seizure medicines. Sudep is extremely rare in children.
I hope this anwers your questions.....
There is a wonderful web site full of info at....
Epilepsy.Com
i have learned alot from there.
Jill
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Cmac,
sorry when I cut and pasted on the last post it all didn't show up so here it is again....
Sudden unexplained death in epilepsy (sudep)?
Sudep is a rare condition in which young or middle-aged people with epilepsy die without a clear cause. It accounts for less than 2% of deaths among people with epilepsy. The risk is about 1 in 3,000 per year for all people with epilepsy, though it can be as high as 1 in 300 for those who have frequent, uncontrollable seizures and take high doses of seizure medicines. Sudep is extremely rare in children.
The person is often found dead in bed and doesn't appear to have had a convulsive seizure. (about a third of them do show evidence of a seizure close to the time of death.) they are often found lying face down.
No one is sure about the cause of death in sudep. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
A person's chances of dying from sudep are reduced if they take all medicines regularly and as prescribed.
A few common-sense safety precautions may minimize the chances of sudep:
take all seizure medicines regularly, as prescribed.
Avoid heavy alcohol use and recreational drugs.
Get regular sleep and avoid fatigue.
Becuase sudep is extremely rare in children, no special precautions during sleep are needed for them.
Jill
sorry when I cut and pasted on the last post it all didn't show up so here it is again....
Sudden unexplained death in epilepsy (sudep)?
Sudep is a rare condition in which young or middle-aged people with epilepsy die without a clear cause. It accounts for less than 2% of deaths among people with epilepsy. The risk is about 1 in 3,000 per year for all people with epilepsy, though it can be as high as 1 in 300 for those who have frequent, uncontrollable seizures and take high doses of seizure medicines. Sudep is extremely rare in children.
The person is often found dead in bed and doesn't appear to have had a convulsive seizure. (about a third of them do show evidence of a seizure close to the time of death.) they are often found lying face down.
No one is sure about the cause of death in sudep. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.
A person's chances of dying from sudep are reduced if they take all medicines regularly and as prescribed.
A few common-sense safety precautions may minimize the chances of sudep:
take all seizure medicines regularly, as prescribed.
Avoid heavy alcohol use and recreational drugs.
Get regular sleep and avoid fatigue.
Becuase sudep is extremely rare in children, no special precautions during sleep are needed for them.
Jill
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Second Opinion
Hi,
no doubt there are risks with any medical condition and medication, however, for your Dr. To come right out and say seizures can kill you is a bit extreme in my opinion. Is this your regular family dr or a specialist who said this to you? My dr has never even suggested this as a possibility. I would suggest that you look into getting a second opinion. It sounds to me like your dr isn't interested in trying anything new with you. He/she may have their reasons, but again getting another dr's opinion is always wise when it comes to serious situations. Good luck!
Kathy
no doubt there are risks with any medical condition and medication, however, for your Dr. To come right out and say seizures can kill you is a bit extreme in my opinion. Is this your regular family dr or a specialist who said this to you? My dr has never even suggested this as a possibility. I would suggest that you look into getting a second opinion. It sounds to me like your dr isn't interested in trying anything new with you. He/she may have their reasons, but again getting another dr's opinion is always wise when it comes to serious situations. Good luck!
Kathy
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Very Definitely
My wife died 12/16/03, pathologist ruled that she died from a seizure disorder. She was 47, we had been married for 20 years, have three children.
Kathyalison, my post is on these boards, entitled "death by seizure disorder" I suggest you educate yourself before you dispense your opinions.
Each year hundreds of people die from seizures, am finding that many doctors don't like to upset their patients and tell them what a high risk for an early death that epilepsy provides.
Please educate yourself, watch what medicines you take, anything that lowers your threshold or is even remotely proconvulsant avoid, don't let yourself get too tired, refrain from any sort of addictive behavior, consequences of coming down off something or trying to wean yourself from something brings seizures. Only medicines you should take are those that doctor gives you, even then check it out yourself, many doctors and shrinks are willing to play the odds that your system will tolerate stuff that indeed can kill.
I wish that I had been more proactive, I thought like ms. Allison prior to 12/16 and as a consequence of thinking like her my wife is dead and my kids have lost their mother, had I only educated myself I might have said something and she might be alive.
I feel for you, I understand how tough it is to face reality, you cannot treat your disease like you treat your sore throat, the consequences of you screwing up can kill you.
Kathyalison, my post is on these boards, entitled "death by seizure disorder" I suggest you educate yourself before you dispense your opinions.
Each year hundreds of people die from seizures, am finding that many doctors don't like to upset their patients and tell them what a high risk for an early death that epilepsy provides.
Please educate yourself, watch what medicines you take, anything that lowers your threshold or is even remotely proconvulsant avoid, don't let yourself get too tired, refrain from any sort of addictive behavior, consequences of coming down off something or trying to wean yourself from something brings seizures. Only medicines you should take are those that doctor gives you, even then check it out yourself, many doctors and shrinks are willing to play the odds that your system will tolerate stuff that indeed can kill.
I wish that I had been more proactive, I thought like ms. Allison prior to 12/16 and as a consequence of thinking like her my wife is dead and my kids have lost their mother, had I only educated myself I might have said something and she might be alive.
I feel for you, I understand how tough it is to face reality, you cannot treat your disease like you treat your sore throat, the consequences of you screwing up can kill you.
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Responding to Your Comments
Bethesdabob,
it's been 2 days since I read your posting regarding my thoughts. When I first read your response I was shocked at how vicious you were towards me and was hurt. So for the last 2 days i've been mulling over in my head and re-reading what you wrote and what I wrote.
Despite being very hurt by your name calling I want to offer my sincerest regrets on your wife's passing. The date of her death stands out to be because I lost a baby on that very same day. I can't imagine how horrific that must have been for you and your family and I am certain that you must ache for her everyday. Please understand I meant no harm in what I wrote. I am aware that people have died from having seizures. A famous canadian emilee dionne was one. So by no means was I suggesting that this doesn't happen, I was only trying to suggest that if a person is uncomfortable with one doctor's opinion then they should get another.
When I post on this site my only intention is to try to be encouraging to others. I apologize for upsetting you and again after having re-read the postings, do understand what you're saying. Please also understand though, that although I know you are very angry, I was hurt by what felt like slander towards me.
I hope you and your family find peace with what has been a terrible tragedy in your lives.
Kathyalison
it's been 2 days since I read your posting regarding my thoughts. When I first read your response I was shocked at how vicious you were towards me and was hurt. So for the last 2 days i've been mulling over in my head and re-reading what you wrote and what I wrote.
Despite being very hurt by your name calling I want to offer my sincerest regrets on your wife's passing. The date of her death stands out to be because I lost a baby on that very same day. I can't imagine how horrific that must have been for you and your family and I am certain that you must ache for her everyday. Please understand I meant no harm in what I wrote. I am aware that people have died from having seizures. A famous canadian emilee dionne was one. So by no means was I suggesting that this doesn't happen, I was only trying to suggest that if a person is uncomfortable with one doctor's opinion then they should get another.
When I post on this site my only intention is to try to be encouraging to others. I apologize for upsetting you and again after having re-read the postings, do understand what you're saying. Please also understand though, that although I know you are very angry, I was hurt by what felt like slander towards me.
I hope you and your family find peace with what has been a terrible tragedy in your lives.
Kathyalison
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My Apologies Kathy
I appreciate your kind remarks, sorry to have come down on you like a ton of bricks, as a parent I think that the only thing worse than losing your spouse would be to lose your child, am very sorry for your loss, hope that you and your family have found the strength----
there exists within me a great sorrow and a large amount of pain, I feel very lost without my wife, I witnessed her having many seizures -- never believed however, that something like epilepsy killed, much less my wife.
I saw your response and felt that perhaps you were downplaying the seriousness of the poster's concerns, and felt it was necessary to let people know of my experience, if only one person takes cognizance of the possible implications of theirs or their loved one's disease, and by becoming more proactive saves themself or that person they love, then
the world benefits.
I apologize for allowing my personal feelings to rise, it was not courteous to address you in the manner that I did. I should have taken a deep breath before I wrote what I did and offended you, I understand from reading your reply back to me the point that you were trying to make, my point is just that epilepsy kills, and families suffer.
there exists within me a great sorrow and a large amount of pain, I feel very lost without my wife, I witnessed her having many seizures -- never believed however, that something like epilepsy killed, much less my wife.
I saw your response and felt that perhaps you were downplaying the seriousness of the poster's concerns, and felt it was necessary to let people know of my experience, if only one person takes cognizance of the possible implications of theirs or their loved one's disease, and by becoming more proactive saves themself or that person they love, then
the world benefits.
I apologize for allowing my personal feelings to rise, it was not courteous to address you in the manner that I did. I should have taken a deep breath before I wrote what I did and offended you, I understand from reading your reply back to me the point that you were trying to make, my point is just that epilepsy kills, and families suffer.
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My Apologies Kathy
I appreciate your kind remarks, sorry to have come down on you like a ton of bricks, as a parent I think that the only thing worse than losing your spouse would be to lose your child, am very sorry for your loss, hope that you and your family have found the strength----
there exists within me a great sorrow and a large amount of pain, I feel very lost without my wife, I witnessed her having many seizures -- never believed however, that something like epilepsy killed, much less my wife.
I saw your response and felt that perhaps you were downplaying the seriousness of the poster's concerns, and felt it was necessary to let people know of my experience, if only one person takes cognizance of the possible implications of theirs or their loved one's disease, and by becoming more proactive saves themself or that person they love, then
the world benefits.
I apologize for allowing my personal feelings to rise, it was not courteous to address you in the manner that I did. I should have taken a deep breath before I wrote what I did and offended you, I understand from reading your reply back to me the point that you were trying to make, my point is just that epilepsy kills, and families suffer.
there exists within me a great sorrow and a large amount of pain, I feel very lost without my wife, I witnessed her having many seizures -- never believed however, that something like epilepsy killed, much less my wife.
I saw your response and felt that perhaps you were downplaying the seriousness of the poster's concerns, and felt it was necessary to let people know of my experience, if only one person takes cognizance of the possible implications of theirs or their loved one's disease, and by becoming more proactive saves themself or that person they love, then
the world benefits.
I apologize for allowing my personal feelings to rise, it was not courteous to address you in the manner that I did. I should have taken a deep breath before I wrote what I did and offended you, I understand from reading your reply back to me the point that you were trying to make, my point is just that epilepsy kills, and families suffer.
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Bethesdabob, Thanks For Your Response
Hi,
even after I responded to you, I continued to think about how difficult things must be for and and how difficult it must have been to think that I was downplaying something very serious. Again, I do apologize. I have to admitt when I originally responded to this post I had only read the first one, and only skimmed the other responses. Had I carefully read them I probably would have written something very different. I guess I only read the words and not the whole meaning of the post. You were right in saying that I should educate myself more about this part of epilepsy. I have been fortunate to not have experienced such tragedy but you have made me more aware of this and I thank you for that. After responding to your comments on this post, I went back and found your original post and got an even clearer idea of where you were coming from and what you experienced and I have great respect for you. What you have gone through and have said has impacted me by making me realize things that I otherwise wouldn't have and for that I thank you as well.
I am so so sorry for your loss and I hope you find the strength you need. If ever you need an ear to vent, please contact me and i'll be more than happy to read what you have to say. I mean that sincerely.
Bless you and your family,
kathy
even after I responded to you, I continued to think about how difficult things must be for and and how difficult it must have been to think that I was downplaying something very serious. Again, I do apologize. I have to admitt when I originally responded to this post I had only read the first one, and only skimmed the other responses. Had I carefully read them I probably would have written something very different. I guess I only read the words and not the whole meaning of the post. You were right in saying that I should educate myself more about this part of epilepsy. I have been fortunate to not have experienced such tragedy but you have made me more aware of this and I thank you for that. After responding to your comments on this post, I went back and found your original post and got an even clearer idea of where you were coming from and what you experienced and I have great respect for you. What you have gone through and have said has impacted me by making me realize things that I otherwise wouldn't have and for that I thank you as well.
I am so so sorry for your loss and I hope you find the strength you need. If ever you need an ear to vent, please contact me and i'll be more than happy to read what you have to say. I mean that sincerely.
Bless you and your family,
kathy
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siezure disorders
hey guys, im 17 years old i began having seizures last year october 30,2010, my seizures make me forget things even what i did up to an hour ago i have lost a lot of weight and am very sickly i am currently on 1000 mil. of keppra i have hair loss as well as the obvious weght loss, and it is hard on my family i am always tired, and have severe headaches what can i do please somone give me advice you can email me maybe im too overdramatic but i feel like i am dying i look so different and am always out of school how can i graduate like this? i need advice asap and is there better medication for me to take perhaps supplements to make me pretty agsin or make my wieght come back,
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Hi, I'm 17 as well and began having seizures again about two months ago that have the same side effects. I was on kepra but it gave me a rash so my neurologist put me on levetiracet and it is helping. I haven't had any bad side effects and it seems to be working. There are diets you can research and other things like getting enough sleep that will help. I know what it's like and I feel for you. I hope it gets better.Balso talk to your neurologist about it. He or she knows best
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And remember that you're beautiful no matter what. No one can change that. I know what's its like to not feel pretty and trust me when I say you're not ugly
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Appreciate Your Remarks
Now I feel like a real heel for leveling the big guns and broadsiding you like I did, you are not anything like the person I thought you would be, I see you're a sweetie after all.
Sorry for your loss.
Sorry for your loss.
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Appreciate Your Remarks
Now I feel like a real heel for leveling the big guns and broadsiding you like I did, you are not anything like the person I thought you would be, I see you're a sweetie after all.
Sorry for your loss.
Sorry for your loss.
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Thanks Bethesdabob!
Thanks for the compliment! It was really touching. I'm glad we've got this sorted out and again apologize for upsetting you. Remember, if you ever need as ear, i'm here!
I give my best to you and your family,
kathy
I give my best to you and your family,
kathy
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Epilepsy And Death..
From my readings, I never read that a person could die because of a seizure. But a person could die because the conditions that the person has the seizure under. Example: if a person has a seizure while they are alone taking a bath.
I suggest, as I have read, to take precautions on doing things like:
being in a bath tub
being in a swimming pool
being up on a ladder.
I suggest, as I have read, to take precautions on doing things like:
being in a bath tub
being in a swimming pool
being up on a ladder.
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You stop breathing during a seizure. If it goes on long enough, it's obvious it can kill you...
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Actually you don't stop breathing during seizures. You definitely may have trouble breathing, but I've never heard of anyone actually stop breathing completely. But because of peoples' trouble breathing during seizures, witnesses should roll them on their side to free their airways, and cushion any part of their body that is banging against hard objects so that they don't hurt themselves. My mom has numerous brain tumor which cause seizures sometimes, and she has never stopped breathing during seizures.
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Some other precautions are either choosing not to use a pillow or using one that can be breathed through.
Most often, a person who dies from sudep or sudden unexplained or unexpected death due to epilepsy, dies alone. Often they are subtherapeutic on their medications (never skip doses!! Take them as dr directs),
some deaths are due to an accident either in car, falls, swimming etc...
Latests statistics are that between 25,000 and 50,000 individuals with epilepsy die of some related cause each year. There are 2.7 million americans treated for epilepsy now.....
Most often, a person who dies from sudep or sudden unexplained or unexpected death due to epilepsy, dies alone. Often they are subtherapeutic on their medications (never skip doses!! Take them as dr directs),
some deaths are due to an accident either in car, falls, swimming etc...
Latests statistics are that between 25,000 and 50,000 individuals with epilepsy die of some related cause each year. There are 2.7 million americans treated for epilepsy now.....
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Idk Wat Im Doing!
(i dont think I did this right)hi.I have epilepsy, and I know very little about it. I keep looking things up online, and im having a hard time finding exactly what I want to know. Basically, I was wondering if seizures can kill you, and I also was wondering, does anybody know of an epilepsy support group for teens, or anybody for that matter, anywhere near western new york, in the springville-buffalo area? Sometimes I have total breakdowns, and I dont like to tell anybody, because I absolutly hate to burdin the people I love. Im really hoping this will help, ive been reading some of the posts and such, and the majority of the people seem to be very nice, and I just hope somebody will help me, that would be wonderful, and if you cant, thats ok too. I guess thats it!
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Re-wording of the Pervious
I think I worded that wrong. I have had a grand mal seizure, and I have the smaller seizures almost daily, (the eye flutters, body jolts, and such), and I was just wondering, if seizures will kill you. My mom told me this morning that she doesnt like to leave me alone, because she doesnt want me to have a seizure and die, and I knew they could kill you, but then she said that I would die any ways, and that she really doesnt know why its helpful to call and see if im alright. Will seizures kill me? I would like a percentage, or a website, or something, if anybody has one, that would be just great! Again, thanks to anybody who could possibly help me, and this website, I think will help me alot in my life, because im not dealing with epilepsy to well.So, will they kill me, not can they, and thats all. Thanks:)
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There is no clear answer to that. No one can usually predict for certain. Percentage of those dying of epilepsy is fairly small, but it does happen. Best to use what precautions you can to try and stay safer.
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My first seizure lasted for about 45 minutes and I had to be intibated for 26 hours before I started breathing on my own. Had I not already been in the hospital, I surely would have died.
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| Tags: seizures, Hair Loss, approach, Epilepsy, weight, hair, loss, about hair loss, epilepsy seizures, about epilepsy | ||
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