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Seizures while sleeping~

Tue, 01/25/2005 - 17:03
Hello everyone,
 
I am new to this site... It is late, but I thought I would throw this question out -
 
Anyone have grand mals only while sleeping?
 
My apologies if I'm not using the correct verbiage (grand mal, to me, meaning the 'generic' seizures 1 hears about mainly throughout life - full body convulsions lasting a couple of minutes, eyes rolling, etc.). 
 
This encompasses my seizure history, mainly.  Quick summary: If I have a petit mal, it starts in my right arm, electric feeling, tone in the ear, still have full control.  When sleeping, many times I wake up w/ what seems to have started as this right arm petit mal, but has 'spread' into my chest.  Most of the time I can wake myself up out of them...seems if my level of awake/self-awareness is high enough, I can stop a grand mal from happening.  However, there are times when I can not wake up enough.  I then lapse into a seizure, experiencing/remembering far too much (scary!), & then next thing I know I am waking up very groggy, & so on.
 
Some may see this as a blessing in disguise, as I have never had a grand mal when I've not been asleep first.  I suppose it is, but the experience is no less terrifying.
 
Thanks for the feedback,
 
Ache

Comments

RE: Seizures while sleeping~

Submitted by Renezellweg on Fri, 2005-02-18 - 17:16

 

I only have nighttime seizures.  I am 37 yrs. old and the first seizure that I've ever had hapenned six years ago and at that time I went to the hospital and they did a CAT scan, EEG, and MRI and found nothing.  THe next time that I had a seizure was about three years later and had the same run of tests and they said that all my tests were normal again.  Last week was the first time that I've had two seizures in one week, according to my husband because I don't remember a thing, but the seizures are always in my sleep and up until have never been consecutive.  I just had all of the tests again and nothing as of yet, but they are finally referring me to a neurologist.  I just want to get to the bottom of all of this and am praying that they will never not happen when I am sleeping.  That's the only thing that I'm thankful for, but according to things I've read they could happen at any time.  I'm hoping that whatever I have is some kind of sleep disorder and that nothing would ever happen in public or where I could hurt myself!  It's all so scary.  I just wonder if anyone has similar types of seizures to mine.  I believe that they are complex partial seizures in my sleep according to everything that I've read on this site!  Bruce, you are a huge help and very knowledgeable, I appreciate that! 

 

 

 

 

I only have nighttime seizures.  I am 37 yrs. old and the first seizure that I've ever had hapenned six years ago and at that time I went to the hospital and they did a CAT scan, EEG, and MRI and found nothing.  THe next time that I had a seizure was about three years later and had the same run of tests and they said that all my tests were normal again.  Last week was the first time that I've had two seizures in one week, according to my husband because I don't remember a thing, but the seizures are always in my sleep and up until have never been consecutive.  I just had all of the tests again and nothing as of yet, but they are finally referring me to a neurologist.  I just want to get to the bottom of all of this and am praying that they will never not happen when I am sleeping.  That's the only thing that I'm thankful for, but according to things I've read they could happen at any time.  I'm hoping that whatever I have is some kind of sleep disorder and that nothing would ever happen in public or where I could hurt myself!  It's all so scary.  I just wonder if anyone has similar types of seizures to mine.  I believe that they are complex partial seizures in my sleep according to everything that I've read on this site!  Bruce, you are a huge help and very knowledgeable, I appreciate that! 

 

 

 

RE: RE: Seizures while sleeping~

Submitted by batman on Sat, 2005-02-19 - 10:11

Renezellweg,

 

First I want to say thank you for your compliments. But just so you, and everyone else who reads my reply, that I am not a doctor, nor any other type of health professional. I’ve just one of the millions of people with epilepsy. What I’ve learned about has been by surfing the Internet over and over, and then reading what I found over and over again. Even though I’m trying to become a mentor through the Epilepsy Foundation of America, I’m going to share what I found with anyone I can, whether it’s the support groups online or local support group near me. The number one problem people have about epilepsy is ‘FEAR’. And now I personally feel that the reason why is solely due to the lack of communication. Not know what questions to ask, and not finding or getting the ‘common sense’ correct answers to the questions when they are asked. There is one source with someone who discusses a lot of information about seizures & epilepsy, to people in a simple and so easy to understand way. This was at the S.E.E. Program I attended just last year in November 2004. For all the information available online about the S.E.E Program go to www.theseeprogram.com. The speaker, Robert Mittan, Ph. D, not only knows more about epilepsy than some neurologist do, he knows about up-to-date information as well. Dr. Mittan presents his two full day conference on weekends; yes weekends, Saturdays & Sundays. So check the website and look over the scheduled dates and locations by clicking on ‘Programs Dates’.

 

Ok, let me work more with what youÂ’ve explained.

 

Inside your two replies here so far, in the first one you said that youhave the complex partial seizures; and then in your second reply you said youbelieve that they are complex partial seizures, but you also mentioned in this same second reply that “they are finally referring [you] to a neurologist”.

 

Here’s some questions I’d like to ask just to find out more indepth details about what you’ve said. Have you ever been seen by a neurologist or epilepsy specialist? What was the type of doctor who told you that your diet may be contributing to the frequency of the ‘nighttime seizures’? Was this doctor a neurologist? Have you actually been diagnosed of having complex partial seizures, or any seizures at all?

 

You said that your husband informed you that you had seizures on a particular night. Ask him what heÂ’s actually seeing you doing and please pass that on to explain it to us. When a person is having a complex partial seizure, it can look like theyÂ’re sleep walking. But if what youÂ’re doing only happens while youÂ’re asleep then you may be actually sleepwalking, and not having any complex partial seizures. Yes, it is highly possible to have seizures due to sleep deprivation. This can happen even if the person having them doesnÂ’t have epilepsy at all.

 

My number question is this. Did you have any seizures and/or seizure-like feelings before you started working with any special diet/weight loss programs? If so, then what were those feelings and were they diagnosed by a neurological doctor as being actual seizures?

 

The scary part might not be from the seizure medications, but from the diet pills that could be the actual source, or part of the source, for the feelings youÂ’re having and possibly appearing to be seizures.

 

Please tell us your answers to these questions, and then we can explain information about the seizure medications if itÂ’s going to be necessary for you to be taking them. Drag on as much as you want, because the more you can tell us, gives us more of a chance to try and help you. ThatÂ’s what the support groups are here for, to communicate and help others to loose the fear about epilepsy.

Bruce J

Renezellweg,

 

First I want to say thank you for your compliments. But just so you, and everyone else who reads my reply, that I am not a doctor, nor any other type of health professional. I’ve just one of the millions of people with epilepsy. What I’ve learned about has been by surfing the Internet over and over, and then reading what I found over and over again. Even though I’m trying to become a mentor through the Epilepsy Foundation of America, I’m going to share what I found with anyone I can, whether it’s the support groups online or local support group near me. The number one problem people have about epilepsy is ‘FEAR’. And now I personally feel that the reason why is solely due to the lack of communication. Not know what questions to ask, and not finding or getting the ‘common sense’ correct answers to the questions when they are asked. There is one source with someone who discusses a lot of information about seizures & epilepsy, to people in a simple and so easy to understand way. This was at the S.E.E. Program I attended just last year in November 2004. For all the information available online about the S.E.E Program go to www.theseeprogram.com. The speaker, Robert Mittan, Ph. D, not only knows more about epilepsy than some neurologist do, he knows about up-to-date information as well. Dr. Mittan presents his two full day conference on weekends; yes weekends, Saturdays & Sundays. So check the website and look over the scheduled dates and locations by clicking on ‘Programs Dates’.

 

Ok, let me work more with what youÂ’ve explained.

 

Inside your two replies here so far, in the first one you said that youhave the complex partial seizures; and then in your second reply you said youbelieve that they are complex partial seizures, but you also mentioned in this same second reply that “they are finally referring [you] to a neurologist”.

 

Here’s some questions I’d like to ask just to find out more indepth details about what you’ve said. Have you ever been seen by a neurologist or epilepsy specialist? What was the type of doctor who told you that your diet may be contributing to the frequency of the ‘nighttime seizures’? Was this doctor a neurologist? Have you actually been diagnosed of having complex partial seizures, or any seizures at all?

 

You said that your husband informed you that you had seizures on a particular night. Ask him what heÂ’s actually seeing you doing and please pass that on to explain it to us. When a person is having a complex partial seizure, it can look like theyÂ’re sleep walking. But if what youÂ’re doing only happens while youÂ’re asleep then you may be actually sleepwalking, and not having any complex partial seizures. Yes, it is highly possible to have seizures due to sleep deprivation. This can happen even if the person having them doesnÂ’t have epilepsy at all.

 

My number question is this. Did you have any seizures and/or seizure-like feelings before you started working with any special diet/weight loss programs? If so, then what were those feelings and were they diagnosed by a neurological doctor as being actual seizures?

 

The scary part might not be from the seizure medications, but from the diet pills that could be the actual source, or part of the source, for the feelings youÂ’re having and possibly appearing to be seizures.

 

Please tell us your answers to these questions, and then we can explain information about the seizure medications if itÂ’s going to be necessary for you to be taking them. Drag on as much as you want, because the more you can tell us, gives us more of a chance to try and help you. ThatÂ’s what the support groups are here for, to communicate and help others to loose the fear about epilepsy.

Bruce J

RE: RE: RE: Seizures while sleeping~

Submitted by Renezellweg on Tue, 2005-02-22 - 12:18

 

Bruce, thanks again for all of the information, it's always very helpful.  I did send you a private email with more details of my situation and look forward to hearing from you again.  In regards to what another lady said a little earlier, I also find there to be somekind of hormonal link between my menstrual cycle and the seizures.  I have the seizures very rarely, four over my entire 37 years.  The first ever seizure was in 1999 and then the next was three years later and then the two consecutive ones were just last Monday and Tuesday night.  They have always happened a day or two before my period starts, though, and I have never had a doctor ask me about my menstrual cycle in relationship to the seizures...never!  I think that I also mentioned that I live my life on Atkins and last week due to a plateau had changed my diet to more of a low fat, low calorie diet and was wondering if maybe that may have contributed to my most recent seizure.  That's another thing that the doctor's have never asked me about.  I am just thankful that so far my tonic-clonic seizures have been only at night when I'm sleeping.  I also excercise regulary and try to eat right for the most part so I am just baffled by how I could have started having seizures after no history of them at age 31.  They do think that the ephedra containing diet pill that I was taking may have brought the seizures on, but no definitive answers and that's what drives me so crazy.  I hate seeing my husband so horrified over these things, as for me, I don't even remember them.  I just suffer from the memory loss and having my body feel like it's been used as a punching bag in the few days afterwards!  Well, good luck everyone and I will update as to whether or not they put me on medication or if I decide to take any of these medications.  I'm just not sure if the side effects of these medicines are truly worth it.

 

 

 

 

 

Bruce, thanks again for all of the information, it's always very helpful.  I did send you a private email with more details of my situation and look forward to hearing from you again.  In regards to what another lady said a little earlier, I also find there to be somekind of hormonal link between my menstrual cycle and the seizures.  I have the seizures very rarely, four over my entire 37 years.  The first ever seizure was in 1999 and then the next was three years later and then the two consecutive ones were just last Monday and Tuesday night.  They have always happened a day or two before my period starts, though, and I have never had a doctor ask me about my menstrual cycle in relationship to the seizures...never!  I think that I also mentioned that I live my life on Atkins and last week due to a plateau had changed my diet to more of a low fat, low calorie diet and was wondering if maybe that may have contributed to my most recent seizure.  That's another thing that the doctor's have never asked me about.  I am just thankful that so far my tonic-clonic seizures have been only at night when I'm sleeping.  I also excercise regulary and try to eat right for the most part so I am just baffled by how I could have started having seizures after no history of them at age 31.  They do think that the ephedra containing diet pill that I was taking may have brought the seizures on, but no definitive answers and that's what drives me so crazy.  I hate seeing my husband so horrified over these things, as for me, I don't even remember them.  I just suffer from the memory loss and having my body feel like it's been used as a punching bag in the few days afterwards!  Well, good luck everyone and I will update as to whether or not they put me on medication or if I decide to take any of these medications.  I'm just not sure if the side effects of these medicines are truly worth it.

 

 

 

 

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