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Shakey Mom

Hysterectomy reduce seizures??

Good morning ladies...

I like, many of you, have catamenial epilepsy.  My seizures are completely controlled except for 1-7 days before I start my period.  I have been on several different meds and several different combonations of meds for several years, but nothing works around the time of menstration.

I am 33 and a handfull of doctors have said because of the epilepsy, my baby making days are over.  That is perfectly fine w/ me.  Since I am no longer contemplating children there is no reason for me to continue to ovulate/ menstrate... especially since the menstration is the reason for the seizures I continue to have.

If I were to have a hysterectomy and didn't have to worry about menstration anymore,  would there be a good chance that my seizure amount would reduce/ be eliminated? 

If anyone has had any experiences or have comments/ suggestions/ ideas .... I would love to read them.

 

Many thanks to all!

Shakey Mom=> Omaha, NE

Comments

Re: Hysterectomy reduce seizures??

Although I can't speak with hysterectomy expierence, I can say that menopause did for me what medications never could and that was improve my seizures. Like you, my seizures were always worse and more frequent around that time of the month. Doctors said I had petit mall seizures but hormones played a big role in them. I could always tell when "that time of the month" was approching by my seizures. I couldn't take birth control pills or anything that had hormones in it because it made them worse and more frequent. Now that I've gone through menopauase, they have improved so much it's unreal! Menopause has done what none of the medications I've taken over the years could do. As I stated in another thread here today, if I had known this, I would
have had my "plumbing jerked out years ago". I hope this helps you and good luck!

Re: Hysterectomy reduce seizures??

I am new to this site and just saw this today, and i am glad to see that i am not the only woman out there who goes through this, I have petit-mal seizures as well and before they got my gran-mals under control i was just horrible couldn't do anything i was having them in my sleep while was awake and my blank out seizures as i call them are so bad, I also wonder if a hysterectomy would be good b/c during all 3 of my pregnancy's I had a hard time, I just don't know how to bring it up to my Dr. b/c he has tried me on 5 different meds and none have worked, and I have told him when they get worse.

Re: Hysterectomy reduce seizures??

I just had a hysterctomy 5 days ago, i was hoping i would wake up to seizure free days but to my disappointment they're still here. i keep telling myself maybe my body needs to recover, needs time to heal and then maybe my body will realize my new lack of estrogen and stop giving me seizures... i will keep you posted. 

Re: Hysterectomy reduce seizures??

Diana73,

I had a complete hysterectomy in May 2011 for my catamenial seizures.  I suffer from simple partials that affect my speech and spatial relationships.  This occures when I would ovulate and again when I would get my period.  I thought the surgery would "cure" me.  Unfortunately, my pattern has reemerged.  The intensity of my seizures is about half of what it was, but it is still happening in a very predicatable pattern of 12 days of normalcy and then 4 days of difficulties.  I am so frustrated!  My problems began with perimenopause and have been going on for four years now.  I don't know what to do next....  Can you please give us an update on your condition?  Hopefully it is better than mine and can give me some inspiration!  I am trying hard to give the reduction in my symptoms a lot of positive energy and not dwell on the fact that it is still happening.

Sincerely,

Carped

Re: Hysterectomy reduce seizures??

Carped- I have a few questions for u...what kind of hysterectomy did u have
(Partial, whole, what is left)?, how soon after the hysterectomy did u go back to
Seizing? Did it ever stop? Are u on any HRT? What AED's are u currently on? And
Last how old are u now? Sorry for the personal questions but I needtl to know so
I can best assess what's going on w your situation. With my experience together hopefully
we can figure this out.

Re: Hysterectomy reduce seizures??

Just wanted to update you all..my hysterectomy was the best thing ever coulve done for my epilepsy. It took about 6 months to
recover hormonally but my seizures disappeared after about 2-3 months. I had one ovary and my uterus removed.
I am no longer on AEDs. I was only able to get the surgery by crying "pain" in my pelvic area. I was
desperate for a life of quality. I must state this is what worked for me. Not everyone is alike but I had
notice more seizure activity around my period. I was in tune w my body and just knew
It was hormone (estrogen) related. By the way if anyone on here does get it done know
this, DO NOT CONSSUME ANY ALCOHOL FOR AT LEAST A YEAR TO THREE AFTER SURGERY!
You're seizures WILL come back w a vengeance. Good luck to you woman suffering w this illness.

Re: Hysterectomy reduce seizures??

Diana73, that is great news!!!!! I wish I had taken that route years ago instead of waiting for it to happen "natually". But, at least the natural way has helped. Maybe in time, yours will improve more! I know this makes you so happy and I'm happy for you!!!!! Take care!!!

Re: Hysterectomy reduce seizures??

That is what I figured...  but I didn't know whether or not there was hormore fluxuation even though ovulation was no longer an issue. 

My seizures are well controlled except at 'that time'...  Every month I have at least 1 seizure in my sleep and I know when that happens I am going to start withing the next few days...  It is so irritating. 

I know w/o a doubt I will be on meds for the rest of my life, but it would be so wonderful not to have to worry about breakthrough seizures.  My last child had to be delivered by C Section (almost 6 years ago). I asked my dr. if he would just take everything out because of the issue w/ the seizures.  He said "No.  There is no point in taking parts out unless it is necessary."  I know now that I should have insisted.

Thanks for the feedback!!  I might see if there is a way to induce menopause!!

Re: Hysterectomy reduce seizures??

Hi ladies, I too have petite mal seizures around "that time", but I HAVE had a hysterectomy with conservation of my ovaries.  The uterus isn't the culprit, it seems to be a lack of progesterone, an ovarian hormone produced after ovulation but which then goes away when you are not pregnant each month.  When you have progesterone it raises the threshold for seizure, making them less likely.  Lack of progesterone lowers the threshold, making them more likely.  Is this making sense?  Go over to google scholar for a whole bunch of information on catamenial sezures, written in a way that should speak to your doctor quite well.  The answer isn't necessarily surgery, which your insurance company would probably deny, but using progesterone supplements during that vulnerable time.  The higher doses need to be prescribed by a physician or nurse practitioner, since the over the counter progesterone creams may not be strong enough.  Also, maybe a visit to the gynecologist for this would be better than your neurologist.  I just found all this info yesterday, so waiting to hear back from the nurse practitioner's office to make an appointment.  Still started the cream from the health food store any way.  Keep you posted!

Deborah

Re: Hysterectomy reduce seizures??

Hello Deborah,

Please recheck this data. It is not the progesterone, but the estrogen, that

facilitates seizures. In reality, it's likely the balance (or imbalance)

between the two. Either way, it is obvious that hormones have a direct

correlation with seizures. Be it a hysterectomy, menopause, or anything else

that may cause major hormonal changes in our systems, they can be very beneficial or

debilitating to our seizure conditions. There are some women whose seizures end at

menopause and others whose worsen (me being one). Some remain the same. There

is really no way to predict how a hysterecomy would effect one woman versus

another. The types of seizures and the AED's each woman is taking also likely

play a role, as they affect various hormones differently. I once had an ovary

and fallopian tube removed, which did not affect my seizures at all. However,

menopause reeked havoc on the number and severity of my seizures for a few

months.

Re: Hysterectomy reduce seizures??

I had a hysterectomy 25 years or so ago but they left my ovaries in because I was so young. I have been through the menopause I did not have epilepsy until 8 years ago around the tail end of the menopause.Maybe it is just different in different people. I have secondary left temporal lobe epilepsy. I take Lamotrogine at he moment I am not seizure free meds getting raised slowly but seizures definitely lessening.