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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: RE: RE: RE: RE: Seizures while sleeping~

Submitted by Renezellweg on Wed, 2005-02-23 - 19:19

Cookieparty,

Wow!  We really are similar!  My seizures started when I was 31 years old and they attribute it to a diet pill that I was taking at the time called Diet Fuel which did contain ephedra.  That was a grand mal seizure in the middle of the night where my x-husband gives the same account as my new husband, who by the way is 12 years younger than me, and very handsome also (LOL)!  I never had another seizure until after my new husband and I were blessed with a beautiful baby boy and me being me was desperate to lose the baby weight quickly and tried an ephedra free diet pill called Zantrex 3.  Needless to say the seizures were back, but I had two of them on two consecutive nights where I was taken to the hospital again and the EEG, CAT scan, and MRI were all repeated as they were also given 4 years earlier when I had my first seizure.  Once again they were considered inconclusive because, apparently they found no abnormalities in any of the tests!  It's all so bewildering!  Due to the length of time that had lapsed between the seizures noone seemed very upset or even interested for that matter.  I went to my general practitioner and she just acted like I could see a neurologist if I wanted to but it was probably just due to the diet pills and I must be super sensitive!  Well, my husband witnessed another grand mal seizure last Tues. night and once again he was scared to death, but at least knew what was happening and knew that it would be over in approximately 4-5 minutes, which it was and he allowed me to go back to sleep, thank god!  It's much better to just be able to go back to sleep rather than paramedics standing over you making you scared to death, I mean petrified!!!!  We are leaving for Cancun tomorrow, of course they are expecting snow storms here, which with my luck will delay our flight (LOL), but I have an appointment with a neurologist as soon as I get back to try and get to the bottom of this.  I have not been on any diet pills since 2003.  The only thing I did that night was have 1 glass of wine, but that's nothing compared to some nights, like New Year's Eve for instance!  I have noticed that my period always starts one or two days after I've had these seizures.  I've seen from this site that some people link it to that.  I've never had a doctor ask me that.  I've also never had a doctor ask about my diet, I too am always on Atkins, but had switched to "The Body For Life" diet the week that I had my last seizure.  I wonder if that really has anything to do with it?  Oh!  There are so many questions in my head that it makes me crazy!

I was cracking up when I read that you do Atkins and you excercise regularly, people make fun of me about how committed I am to the gym!  I feel better mentally, though, when I workout!  How are your seizures doing?  Is the medicine making them better!  When I heard that Topamax makes you have no appetite, of course, I wanted to be on that one (LOL)!  I read that your side effects were awful, though, and I didn't like that!  They've always left it up to me as to whether or not I wanted to try medication since the seizures are so infrequent.  To be honest I am just so afraid of the medications because of all of the negative side effects that surround them.  Boy, I could certainly relate to you when you were talking about not being able to remember what you were doing or searching your brain for the right word!  I do it all of the time and I was an English major and feel so stupid!  I think that people that I'm trying to carry on an intelligent conversation with must think that I'm an idiot!  I'm fortunate enough now to be a stay-at-home mom, but I can't even imagine being in the workforce again with the way my memory is!  That's why I wonder if I'll just be worse if they put me on medicine!  It's all so scary!  The only thing that gives me a little bit of solace is the fact that my seizures, so far, have only happened at night.  Tell me more about your seizures and how often you have them.  When did they decide to put you on medicine?  I swear, my doctor acts like it's no big deal, but after I've had the seizure I feel like I've been beaten to a pulp and I workout!  I can't imagine how someone that isn't used to working their muscles must feel!  I guess on the up side, it's a really great workout (LOL)! 

I tend to go on and on and I'm sorry about that, but it's always nice to talk to people that have this strange whatever it is going on inside their brain like me!  I'm not sure if that made sense, but you know what I mean!  Unfortunately, I fear I may never know why these things come over me when they do, but a few answers would be nice.  Keep in touch and thanks for responding! 

 

 

Cookieparty,

Wow!  We really are similar!  My seizures started when I was 31 years old and they attribute it to a diet pill that I was taking at the time called Diet Fuel which did contain ephedra.  That was a grand mal seizure in the middle of the night where my x-husband gives the same account as my new husband, who by the way is 12 years younger than me, and very handsome also (LOL)!  I never had another seizure until after my new husband and I were blessed with a beautiful baby boy and me being me was desperate to lose the baby weight quickly and tried an ephedra free diet pill called Zantrex 3.  Needless to say the seizures were back, but I had two of them on two consecutive nights where I was taken to the hospital again and the EEG, CAT scan, and MRI were all repeated as they were also given 4 years earlier when I had my first seizure.  Once again they were considered inconclusive because, apparently they found no abnormalities in any of the tests!  It's all so bewildering!  Due to the length of time that had lapsed between the seizures noone seemed very upset or even interested for that matter.  I went to my general practitioner and she just acted like I could see a neurologist if I wanted to but it was probably just due to the diet pills and I must be super sensitive!  Well, my husband witnessed another grand mal seizure last Tues. night and once again he was scared to death, but at least knew what was happening and knew that it would be over in approximately 4-5 minutes, which it was and he allowed me to go back to sleep, thank god!  It's much better to just be able to go back to sleep rather than paramedics standing over you making you scared to death, I mean petrified!!!!  We are leaving for Cancun tomorrow, of course they are expecting snow storms here, which with my luck will delay our flight (LOL), but I have an appointment with a neurologist as soon as I get back to try and get to the bottom of this.  I have not been on any diet pills since 2003.  The only thing I did that night was have 1 glass of wine, but that's nothing compared to some nights, like New Year's Eve for instance!  I have noticed that my period always starts one or two days after I've had these seizures.  I've seen from this site that some people link it to that.  I've never had a doctor ask me that.  I've also never had a doctor ask about my diet, I too am always on Atkins, but had switched to "The Body For Life" diet the week that I had my last seizure.  I wonder if that really has anything to do with it?  Oh!  There are so many questions in my head that it makes me crazy!

I was cracking up when I read that you do Atkins and you excercise regularly, people make fun of me about how committed I am to the gym!  I feel better mentally, though, when I workout!  How are your seizures doing?  Is the medicine making them better!  When I heard that Topamax makes you have no appetite, of course, I wanted to be on that one (LOL)!  I read that your side effects were awful, though, and I didn't like that!  They've always left it up to me as to whether or not I wanted to try medication since the seizures are so infrequent.  To be honest I am just so afraid of the medications because of all of the negative side effects that surround them.  Boy, I could certainly relate to you when you were talking about not being able to remember what you were doing or searching your brain for the right word!  I do it all of the time and I was an English major and feel so stupid!  I think that people that I'm trying to carry on an intelligent conversation with must think that I'm an idiot!  I'm fortunate enough now to be a stay-at-home mom, but I can't even imagine being in the workforce again with the way my memory is!  That's why I wonder if I'll just be worse if they put me on medicine!  It's all so scary!  The only thing that gives me a little bit of solace is the fact that my seizures, so far, have only happened at night.  Tell me more about your seizures and how often you have them.  When did they decide to put you on medicine?  I swear, my doctor acts like it's no big deal, but after I've had the seizure I feel like I've been beaten to a pulp and I workout!  I can't imagine how someone that isn't used to working their muscles must feel!  I guess on the up side, it's a really great workout (LOL)! 

I tend to go on and on and I'm sorry about that, but it's always nice to talk to people that have this strange whatever it is going on inside their brain like me!  I'm not sure if that made sense, but you know what I mean!  Unfortunately, I fear I may never know why these things come over me when they do, but a few answers would be nice.  Keep in touch and thanks for responding! 

 

 

RE: RE: RE: RE: RE: RE: Seizures while sleeping~

Submitted by pongosmommy on Wed, 2005-02-23 - 19:48
Cookeeparty & renezellweg,Did either of you also drink the "energy drinks"? I Was never asked about the Diet pills I used to take. It has been a while...but I started drinking those high energy drinks just before my seizures started getting really bad.Dayna

RE: RE: RE: RE: RE: RE: Seizures while sleeping~

Submitted by cookieparty on Thu, 2005-02-24 - 15:46
hi Renee About the medicines, and the monthly cycles...oh and the younger husband (go girl!)..... Now, the cycles, the only doc who has treated the hormonal and menstral cycle theory as a serious one has been female and I find her to be extremely credible. Catamenial (SP?) seizures are associated with menstral cycles. While my newest 'female' doc says that she thinks that my nocturnal seizures are not being 'caused' by the onset of perio menopause (that is the time of craziness in your hormones before you actually are menopausel...some months you have a period, some months you don't, some months it happens for about 5 minutes, some months for about 15 days, etc., the hot flashes for some, seizures for others!!!!!) , that they are probably GRAN MAL seizures because of the hormonal imbalance of periomenopause. When your estrogen level is high, 'closes the door to seizure activity' and when your progesterone level is high, it 'opens the door to seizure activity' per my new lady doc. As for the Lamictal, I am looking forward to weaning off of the Topamax and being just on the Lamictal. With the Lamictal in my system, it seems to have counteracted some of the negative effects of the T-max I could never have written these notes before). But, I am hoping that once the T-max is completely out of my system, things will be even better.By the way, just got a transfer to a bigger better position in my company so it better work!

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