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Posted 10/5/2003 11:10 PM (GMT 0)


Hi!


I am hoping to find other women that are struggling with the same issues. I have had seizures for 10 years now. I had always dealt pretty well with them. However, I find myself going through a hard time now. I am 30 years old, with a wonderful husband. We have 3 children. ( 6 years, 20 months, & 9 months)


I wake up every morning, living in fear of what the day holds. I have always been luck in knowing. I can tell within an hour of waking. So, if need be, I call my husband to come home and take care of everything that I can not handle for the day.


They started, two days before periods. (2 days before to be exact) My OBGYN put me on birth control pills and they slowed down a lot. I never had them during pregnancy. I always had one after child birth. (Usually 2 months after) I feel that mine are cataminal. I would like to find out if any other women have the same problems. I also had my tubes tied after our last child. I have had 2 seizures in the past 9 months. Has anyone had adverse effects from their tubes being tied? Also does a hysterectomy make things better or worse? My doctor suggested removing my ovaries because of cysts.


I need self esteem again, to begin my days. I have responsibilities and I hope to find strength. If you suffer from any of the above, please let me know.


Thanks,

Nikki

Posted 11/7/2003 4:59 AM (GMT 0)
Hi Nikki (and everyone)

I am 32 and female, and was diagnosed with epilepsy when I was 12. I have tried 8 different medications, none of them totally successful. My seizures have changed throughout my life, and I also have them close to my periods. I have been pregnant on Dilantin and had terrible seizures. Was also pregnant on Tegretol with better results. Were you on medication with any of your pregnancies? Were you afraid of birth defects?

Like you, I am also usually able to predict my seizures, and after 16 years of having epilepsy, was finally given Ativan, a valium like drug that can stop seizures within about 30 minutes of you feeling them coming on. It's not a drug that can be taken regularly, as the body builds a tolerance for it and it becomes less effective, but it is a life saver in those situations when you know you're in danger of having a seizure. It's especially helpful with seizures that happen as I fall asleep; I usually wake up out of them, or can sense them like butterflies in my stomach, then I can't sleep for fear of having a seizure. The Ativan will prevent the seizure as well as help me relax and fall asleep. It's a low dosage, too, so it doesn't have too bad of an affect (just very relaxing).

Hormones are a big factor in my seizures, as well as different stresses, such as lack of sleep ESPECIALLY staying up too late or getting up too early, regardless of whether I get enough sleep; lack of food; constipation; being embarrassed or put on the spot or being startled or nervous. When I refer to my seizures I mean simple partial, mostly, except at night I'll have more grand mal type. I've never really had loss of consciousness when I was awake, although I did when I was on Dilantin and pregnant and undergoing other stressors. This leads me to believe that a person's seizure activity can be ever changing.

I work a normal job and live a pretty happy life, although epilepsy has always held me back from doing things and persuing interests because I thought I wouldn't be able to do them. For example, I could never be a doctor or a midwife for fear of putting someone else in danger.

I'm worried about medications and brain damage and dying, but am thankful that I am able to live a fairly normal life. Having a partner who understands and helps out is a huge plus!

Has anyone had or considered the VNS?

Thanks! Deanna
Posted 12/3/2003 5:03 AM (GMT 0)

I am 40 years old and started having seizures 5 years ago.   I had an abnormal eeg and was put on depakote for one year.    About 2 months ago, I had another seizure.   I was put back on depakote and then had another one - one month later.   I believe that hormones are involved because of the timing.  Always one week before my period.   Also-at 40, I'm probably pre-menopausal.   You know what that means-lol   wildly fluctuating hormones.      Maybe thats why I have had two in the last two months.?    I wish I knew more.   Anybody having depression as a side effect of medication?   

Posted 10/23/2004 5:05 PM (GMT 0)
This is something that I am hoping Christine DBG will catch. I believe she has some knowledge to share on this subject. I myself do not suffer from this kind of E. I find the relationship between hormone levels and seizures quite amazing. Sorry you have to go threw this. Take Care. Tracy
Posted 10/23/2004 6:00 PM (GMT 0)
I'm really fascinated by this connection too. I seem to have my auras closest to my period as well. Its awful.. I pretty much feel like I should just call in to work when I know my period is coming and telling them I will undoubtedly be unwell for a few days :(
Posted 10/23/2004 10:18 PM (GMT 0)
Hi gals,

I'm the exact same way. 10 days before my period, the seizure activity always goes up. I get simple partials with auras and bad smells. During the rest of the month I have no seizures. So even being medicated I get these break-through seizures. The connection is really something isn't it!

Posted 10/26/2004 11:32 AM (GMT 0)
 

Do any of you that suffer from this have children? Did you notice the situation change any after having a baby? My husband and I are finished having children and I am still considering the partial hysterectomy. I am trying to research how this may affect my situation. I am hoping that without a cycle I will not have these episodes.

What do you think?

Nikki

Posted 1/28/2005 1:02 AM (GMT 0)
Nikki, my wife has been dealing with epilepsy for 8 years now. It hasn't been an issue until our second child who is now 1 year. After she was born Anna had her tubes tied. It seems like the seizures have been around only since then. Do you think a reverse surgery to untie her tubes is an option. I don't like to see her scared and want to help. Jeff
Posted 2/2/2005 9:40 PM (GMT 0)
I never had any seizures before last year. (I'm 37.) I also began using the Nuva-Ring birth control last year. Connected? Don't know. My neuro said it might be possible that I was always just below the threshhold for having seizures and then having the low dose of birth control might have taken me just above the threshhold.

I started taking Trileptal in January (god, January was a long month!) and had not had a seizure until yesterday. Had a SP in the morning and a CP last night.

I also removed the last Nuva Ring 10 days ago.

I'm very interested in the connection between hormones and seizures. I'm not sure if they're related in my case, but my husband is convinced. We'll see.
Posted 3/5/2005 5:55 PM (GMT 0)
Hi, was reading your post about how you ladies had seizures before you started your period, it is definetly a change in hormones which can cause an onset of seizures. I had brain surgery in 2002 for my complex partial seizures, which I had, had for about 30 years of my life. I had been on several medications and none of them worked for long until I would start to have what the neurologist call breakthrough seizures. I have been seizure free for almost three years now, and I can honestly say it has beent the best decision that I have ever made. I didn't have to really think twice about the surgery, I had come to a point in my life, that I knew something had to be done, my quality of life had been effected so much by the seizures. Now I am driving again and have my freedom back! it has truly changed my life. my only concern is when I go through menopause, which probably wont' be long because I am 41, and I just wonder if the onset of menopause could set off seizures in me again. If any of you know of someone that has had the surgery and has went through menopause without any complications please e-mail me and let me know. [email protected]
I can't imagine going through that again, but this is where I have to put my faith in God. I wish the best for all of you.

Many Blessings,

mercyme/cindy
Posted 3/5/2005 6:59 PM (GMT 0)
Hi everyone....I too have noticed an increase in my seizure activity around my period. This cycle I actually had 3 CP's...the first I have had in a while and a vicious migraine which my neuro says is part of my E....during my cycle as well. I will definetly be mentioning this to my doctor as a trigger factor for my seizures. Thanks for the info and good luck all....(((Sheena))) tongue
Posted 3/7/2005 3:10 AM (GMT 0)
I would get a seizure the day before or the day of my period.  As my periods were often irregular, it was often the only way I knew when my period was going to start! 

When I became perimenopausal, that's when my seizure activity really went wild.  Hormones have helped me, I think, but my neuro tells me since my seizure activity has been stimulated by my changing hormone levels, things may never be the same again.  Now where have I heard that story before?                   Glenda

Posted 3/9/2005 2:04 AM (GMT 0)

Hi,

My seizures are specifically catamenial, before my period and 1 day after. I have also had migraines around this time since I was in my 20's. The migraines were very predictable (several the 2 weeks before my period) and then the seizures began about 4 yrs ago. I'm thankful I have an aura so I can prepare myself for what's going to happen next. Sometimes it can be somewhat confusing...I'm not always sure if it's the migraine that triggers the seizure or the seizure that triggers the migraine. I don't know about the rest of you but I have a whopping migraine after every seizure.

From everything I've read there is a strong connection between hormones and seizures (women and their cycles and kids going thru puberty). I don't know exactly how that's going to help all of us...I think we can all agree we know there's a connection....Now what?

I couldn't help but notice a post that mentioned using Ativan along with their anticonvulsant. My husband has mentioned this to me, wondering if it might help to use something like that right before my cycle. It wasn't a problem until last month when everything went out of control, seizures almost every other day, my Lamictal level dropped and I was totally uncontrolled. I've been hesitant to introduce anything new into the mix, since I'm already taking Lamictal 750mg and Fiorcet for the migraines which have been more frequent than not. Has anyone else used Ativan in this way? If so, I'd like to hear more.

To answer the question of un-tieing tubes, YES it can be done. My friend had her's untied after 14 yrs to have another child. I'm sure if you discussed your concern with your OB-GYN he would consider it to be more than just elective surgery.

cm

Posted 3/21/2005 3:26 AM (GMT 0)
I have seizures (absences) EXCLUSIVELY during my periods. In fact this is not all that bad, if you think a little. I don't need to live in fear all the time ;) I try to be more at home during the periods and to take it easy ...

Best

Axa
Posted 5/30/2006 7:57 PM (GMT 0)
confused  I had been diagnosed with a "seizure disorder" 7 years ago. I have been taking Dilantin since. I an now up to 6oomgs/day. I don't know the names of all the types of seizures since I have no insurance and therefore little contact with specialists. I have what I know now are grand mals (without warning) at least 6x/year. I also have many bouts of "tunnel vision/hearing". At least 10x/day to start and now maybe 5x/week. I also have episodes of severe, debilitating shaking while fully awake. I have determined on my own that lack of sleep or not eating enough and definitely stress seems to bring them on. I'm afraid to drive. I lost my job of 6 years due to absences at work resulting from the 10-15 hours of sleep needed after a grand mal. My children are 19 and 13. I recently found out I am pregnant!!  I am so scared.....My dr feels I should continue on the Dilantin since a seizure may cause more damage than the meds. What should I do? I have been to see many specialists since becoming pregnant (thanks to a state sponsored insurance program) and they keep telling me about all these birth defects I should expect. My husband and I decided not to take all the tests they offer since we will have a new baby in November regardless of it's condition. Does anyone have any "real world" information regarding these birth defects and if they are as prevalent as the drs tell me? Is there anything I can do to help prevent or reverse these defects?  Any help or support would be completely appreciated!!!!
Posted 6/1/2006 11:15 AM (GMT 0)

MommaMary..

I was diagnosed with a seizure disorder when i was 18.,... i am now almost 27,, have 2 kids (6 and 4) and am 6 and a half moths pregnant now. I am on Tegretol 400mg twice daily. My babies were born healthy and happy.  I have GERED, Mitral Valve prolapse and undiagnosed Anxiety/panic. And believe it or not.. birth defects are the one of the things i am not worried about. I know that i am not on the same meds as you but it helps to hear others stories and i am sure there will be more ppl to respond about it. The best thing you can do is think positively about your new baby and do all the research you can.. Look at it this way,,, sometimes the meds outweigh the risks way more. I  have been seizure free since i was 2 months pregnant with my 4 yr old (knock on wood). Anyways just thought that i would share my story.. hope it helps.

Posted 6/5/2006 9:29 AM (GMT 0)
thank you so much for your response!!!  I also have an anxiety disorder. I have tried just about evry pill available for it. The last was xanax. I was on it for about 3yrs--up to 6 10mg pills per day with very little results. Since I have been off it, I have tried my own "cures" which are basically stress relief practices---you know, slow breathing, thinking happy thoughts, less caffeine, trying not to get into stressful situations (haha) and so on. I do have a very positive attitude towards my pregnancy. I feel great. I keep telling the doctors how I know my body and I think I would know if something was wrong, but again, they keep attacking me with all this negative stuff. I was just a little emotional when I posted the original message and had just been to the doctor and,. well.....you can understand. But, thank you again!!!!!

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