Seizures/Sleeping/Menopause

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I have also been having seizures while sleeping. The first was Sept 1999, I was 47 years old (can you peri-menopausal?) is that spelled correctly? Anyway, I woke up in an ambulance wondering what the heck was going on. My husband had called 911, because he could not wake me up, and as I said this was the first time. So we went to the hospital and they poked and prodded for 3 days and found...nothing! But I was assigned a very nice Neurologist who has me on Topomax. I have done sleep studies also. Nothing there either.For the next 3 years or so I had nocturnal seizures sporatically (as my periods wound down) until last year when my periods stopped. Now I get a seizure about once every 4 weeks (around the new moon) followed by 3 or 4 days of absence seizures during the day. The doctors still cannot find anything "wrong". My husband thinks I should see an Endocrinologist (for hormones). I'm game. Does this sound familiar to anyone?

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RE: Seizures/Sleeping/Menopause

Submitted by Renezellweg on Thu, 2005-03-03 - 14:30

Lynn,

I just got back from a wonderful week in Cancun, MX so I am sorry that it has taken so long for me to respond. I know what you mean about waking up in an ambulance and not knowing what in the heck is going on. That's what happened to me the first time when my x-husband was the witness and said that it was the scariest thing that he'd ever seen! That happened in 1999 when I was 30 years old and they did every test possible in the hospital and came up with nothing and since I had been on a diet pill that contained ephedra they just attributed the seizure to that. I thought the same thing and never thought about it again until a few years later after the birth of my son I was desperate to lose weight quickly and tried a diet pill that did not contain Ephedra and was supposed to be safe. They had told me in the hospital that it was probably the ephedra that had brought the seizure on so I thought a pill without ephedra was fine. Well, low and behold I had two grand mal seizures in the middle of the night again. My poor husband who is ten years younger than me was scared to death and he also called the ambulance and I went to the hospital. They ran all of the tests again and attributed it again to the diet pills since they found nothing and warned me never to take ANY diet pills again. Well, about a month ago after not having any seizures for a couple of years I had another grand mal seizure while sleeping. I've had all of the tests again and nothing. I remember being extrememly tired and was pretty sleep deprived and it was also the night before my period started. They've asked me to try and relate it to my period which I'd never considered before. I had also come off of my low carb diet which I do all the time since there is a history of diabetes in my family and that is a highly recommended diet for diabetics so I threw that out there and they said that, that very well may have affected me in such a severe way. My doctor has talked about putting me on Topomax, but I've read about all of the side affects and am scared of them. I think that I'd rather live with having a the seizures since they are so rare. I noticed that you said that you still had one while you were on the medicine. That would highly upset me if that happened. Do you experience the side affects from the Topomax like I hear everyone else talk about?

I'm sorry that this was so long, but just looking for anwers since the doctors seem so clueless. I mean, maybe, they are right and it was attributed to the diet pills and the diet. I guess that, that could make sense. The hormonal thing sounds more believable, though. I just have no idea. It's mind boggling. I am just thankful that they only happen at night. They are grand mal seizures not complex partial as I accidentally referred to them before. I was able to clarify that with the doctor. I've never had the "absence seizures" that you referred to. What is that exactly?

Well, thanks for responding and I'd love to hear more about what you find out, if anything. I'd also like to know more about your experience with Topomax. Best of luck with everything and you are in my prayers! Seizures are so scary so it's nice to have support here!

Deborah

Lynn,I just got back from a wonderful week in Cancun, MX so I am sorry that it has taken so long for me to respond.  I know what you mean about waking up in an ambulance and not knowing what in the heck is going on.  That's what happened to me the first time when my x-husband was the witness and said that it was the scariest thing that he'd ever seen!  That happened in 1999 when I was 30 years old and they did every test possible in the hospital and came up with nothing and since I had been on a diet pill that contained ephedra they just attributed the seizure to that.  I thought the same thing and never thought about it again until a few years later after the birth of my son I was desperate to lose weight quickly and tried a diet pill that did not contain Ephedra and was supposed to be safe.  They had told me in the hospital that it was probably the ephedra that had brought the seizure on so I thought a pill without ephedra was fine.  Well, low and behold I had two grand mal seizures in the middle of the night again.  My poor husband who is ten years younger than me was scared to death and he also called the ambulance and I went to the hospital.  They ran all of the tests again and attributed it again to the diet pills since they found nothing and warned me never to take ANY diet pills again.  Well, about a month ago after not having any seizures for a couple of years I had another grand mal seizure while sleeping.  I've had all of the tests again and nothing.  I remember being extrememly tired and was pretty sleep deprived and it was also the night before my period started.  They've asked me to try and relate it to my period which I'd never considered before.  I had also come off of my low carb diet which I do all the time since there is a history of diabetes in my family and that is a highly recommended diet for diabetics so I threw that out there and they said that, that very well may have affected me in such a severe way.  My doctor has talked about putting me on Topomax, but I've read about all of the side affects and am scared of them.  I think that I'd rather live with having a the seizures since they are so rare.  I noticed that you said that you still had one while you were on the medicine.  That would highly upset me if that happened.  Do you experience the side affects from the Topomax like I hear everyone else talk about?  I'm sorry that this was so long, but just looking for anwers since the doctors seem so clueless.  I mean, maybe, they are right and it was attributed to the diet pills and the diet.  I guess that, that could make sense.  The hormonal thing sounds more believable, though.  I just have no idea.  It's mind boggling.  I am just thankful that they only happen at night.  They are grand mal seizures not complex partial as I accidentally referred to them before.  I was able to clarify that with the doctor.  I've never had the "absence seizures" that you referred to.  What is that exactly?Well, thanks for responding and I'd love to hear more about what you find out, if anything.  I'd also like to know more about your experience with Topomax.  Best of luck with everything and you are in my prayers!  Seizures are so scary so it's nice to have support here!Deborah      

Lynn,

I just got back from a wonderful week in Cancun, MX so I am sorry that it has taken so long for me to respond. I know what you mean about waking up in an ambulance and not knowing what in the heck is going on. That's what happened to me the first time when my x-husband was the witness and said that it was the scariest thing that he'd ever seen! That happened in 1999 when I was 30 years old and they did every test possible in the hospital and came up with nothing and since I had been on a diet pill that contained ephedra they just attributed the seizure to that. I thought the same thing and never thought about it again until a few years later after the birth of my son I was desperate to lose weight quickly and tried a diet pill that did not contain Ephedra and was supposed to be safe. They had told me in the hospital that it was probably the ephedra that had brought the seizure on so I thought a pill without ephedra was fine. Well, low and behold I had two grand mal seizures in the middle of the night again. My poor husband who is ten years younger than me was scared to death and he also called the ambulance and I went to the hospital. They ran all of the tests again and attributed it again to the diet pills since they found nothing and warned me never to take ANY diet pills again. Well, about a month ago after not having any seizures for a couple of years I had another grand mal seizure while sleeping. I've had all of the tests again and nothing. I remember being extrememly tired and was pretty sleep deprived and it was also the night before my period started. They've asked me to try and relate it to my period which I'd never considered before. I had also come off of my low carb diet which I do all the time since there is a history of diabetes in my family and that is a highly recommended diet for diabetics so I threw that out there and they said that, that very well may have affected me in such a severe way. My doctor has talked about putting me on Topomax, but I've read about all of the side affects and am scared of them. I think that I'd rather live with having a the seizures since they are so rare. I noticed that you said that you still had one while you were on the medicine. That would highly upset me if that happened. Do you experience the side affects from the Topomax like I hear everyone else talk about?

I'm sorry that this was so long, but just looking for anwers since the doctors seem so clueless. I mean, maybe, they are right and it was attributed to the diet pills and the diet. I guess that, that could make sense. The hormonal thing sounds more believable, though. I just have no idea. It's mind boggling. I am just thankful that they only happen at night. They are grand mal seizures not complex partial as I accidentally referred to them before. I was able to clarify that with the doctor. I've never had the "absence seizures" that you referred to. What is that exactly?

Well, thanks for responding and I'd love to hear more about what you find out, if anything. I'd also like to know more about your experience with Topomax. Best of luck with everything and you are in my prayers! Seizures are so scary so it's nice to have support here!

Deborah

RE: RE: Seizures while sleeping~

Submitted by Lynn610 on Wed, 2005-03-02 - 11:28

Hi RenePlease read my post under Seizures/sleeping/menopause just so i don't have to retype itThanks, Lynn610