Ladies only...catamenial question

[LJ-Bain]

So I am going to see a gynecologist who has an interest in the way hormones affect seizures.
He goes to my church and apparently he has helped other women.
He likes to place women on birth control pills permanently that cause you never to ovulate.
I was only on the pill once when I was 18 (many years ago now I admit)
and they made me depressed but he says that it really helps some women reduce their seizures.

I'm a little skeptical because mainly I have heard people mention progesterone cream on here.

I'll ask him lots of questions but I don't want to be railroaded into anything.

Have people heard of this or tried this technique themselves?

[MaryK]

LJ: When I started perimenopause and then menopause my gynecologist put me on progesterone pills only. Not a birth control pill that often combines estrogen and progesterone. I did this for a few years. I know there is some information on the web about the use of progesterone for this. For me extra estrogen was not a good thing. Birth control pills used to be much stronger than they are now though. Not sure. You are right to ask lots of questions, because just like seizure meds every woman reacts to hormones a little differently. There was someone who asked a similar question a week ago or so. I will have to look for that thread for you. I also used progesterone during my 30s to regulate my period, but again not the standard birth control pills. Maybe he has a study he has been doing that will show you his results, age of patients, etc. Good luck at your appt. Will be looking forward to what he says and what you decide to do. MaryK

[Nakamova]

Haven't tried this myself, but I would recommend that you ask a lot of questions. My guess is that he's recommending the mini-pill (which is progesterone-only) as opposed to the regular pill (which has both estrogen and progesterone). The mini-pill is synthetic progesterone, which is considered to be less effective than the bio-identical progesterone found in the cream or lozenge form. There's good info about it here: http://professionals.epilepsy.com/pa...treatment.html

You might be interested in the discussion found here (scroll down): http://www.epilepsy.com/discussion/968346 It has positive comments about the use of progesterone cream to reduce seizures

[LJ-Bain]

I saw the Dr. and he wants to inject a pellet under the skin of my belly, it's called zolodex and force my body into menopause and supplement with progesterone and estrogen to keep an even non fluctuating flow to avoid the side effects of actual menopause. The pellet slowly absorbs over 30 days.
I'm not sure what to think. I'm going to see what the neurologist thinks but it really sounds like it would be truly altering my body without being able to stop the effects if I don't like it.
The Dr. said that oral lozenges and creams were ineffective.
It may be worth a shot but they have only tried me on one anti-epileptic drug and I wonder if this is premature.

[JLogefeil]

So I am going to see a gynecologist who has an interest in the way hormones affect seizures.
He goes to my church and apparently he has helped other women.
He likes to place women on birth control pills permanently that cause you never to ovulate.
I was only on the pill once when I was 18 (many years ago now I admit)
and they made me depressed but he says that it really helps some women reduce their seizures.

I'm a little skeptical because mainly I have heard people mention progesterone cream on here.

I'll ask him lots of questions but I don't want to be railroaded into anything.

Have people heard of this or tried this technique themselves?

The only thing that comes to my head when I read this is that, you should be carefully. Do a lot of research on this Dr., look online and read about how the pros and cons and treating seizures with BC, and listen to your body, and don't let them fool you into doing something crazy.
This is very interesting to me please keep us/me posted.
Good Luck

[Nakamova]

You might want to read this article http://www.internalmedicinenews.com/...-seizures.html

It discusses different studies, and concludes that at least with some types of catamenial epilepsy, progesterone lozenges CAN make a difference. I would be wary of your doctor's plan, and agree that you should be persistent in demanding more information before going ahead with something like this.

[jonsey]

hi im so interested in this subject , having years of telling my daughters doctor and nurse at the hospital that her trigger is her cycle. Only these last few months once getting our family doctor on the case there has been some action . We found that when Amy had her depo which she has every 10 weeks came towards the end she would seziure . No month is the same for any woman. After six years we are waiting on an appointment with the gynie .

[MaryK]

Please approach this treatment option very carefully. I spent about an hour reading about the drug Zoladex and it does really appear that it will cause a dramatic change in your body.

It is a drug that is used to treat prostate and breast cancer and also for endometriosis and preparing the uterine lining before an ablation procedure.

I would continue to research and definitely talk to my neurologist before doing this therapy, only echoing what everyone else has said. It might be a good idea for your neurologist to talk with your gynecologist.

And as far as the progesterone not working, I did have very good results as stated above. Standard birth control pills (estrogen/progesterone) were seizure triggers for me and also increased my migraines. Menopause does have benefits such as only an occasional migraine now.

You bring up a good point that you have only tried one seizure med at this time... maybe that might be the better option trying a different seizure med.

Take care
MaryK

[tinathesingergirl]

How very intersting sounds a lot like depro-provera here in the U.S. at least in the delevery method or something that came out about 10-13 years ago or am I thinking of something diffrerent that they took off of the market? Anyway let us know what you find out and what you decide.

Tina

[LJ-Bain]

Thanks Nakamova for the article link and wow, Mary K, thanks for reading up on Zoladex! I did the same and it really seems like an extreme measure. I have the script on my fridge but I have some serious considering to do before I take the next step.
Jonsey: I hope that they start listening to you now! I don't understand when they think that we don't know what happens to our own bodies.
Tina, my sister who doesn't have epilepsy took depro-provera but went off of it when she started to lose her hair!
I'll keep you up to date!

[RobinN]

My daughter has had a hormonal imbalance. I believe it to be connected to her hypoglycemia. She used the bio-identical hormone cream for a while. It seemed to help some, was not the only answer for us. Making nutritional changes has helped even more. However, she has also since gone on the pill, and it is one that eliminates her period for three months at a time. It is higher in progesterone, I believe. It has certainly helped how she feels each month. However, on the third month, she is usually caught off guard. I believe balancing these hormones is extremely important for those that are sensitive. Start with nutrition first though, because the role insulin plays is huge.

[aaron]

Sorry to jump into the "ladies only" chat but my girlfriend and I have just realised that her seizures (usually Grand Mal) seem to coincide with her cycle.

I will have to get her to go through her diaries to make sure but I know the last 6 months or so that I can remember off hand, there has been a span of 1 - 2 days in which she will have anywhere from 1 - 4 seizures which always happen around the same time.

It has come to the point where she pretty much counts down. Last week she was saying "I'm due for seizures" and in the last 30 hours she's had 1 Grand Mal and 2 not so severe seizures. Between her periods she is perfectly fine and no seizures of any kind at all.

Can't see her neurologist until late June but will certainly be mentioning it to him. I hope he has some info.

This has given me some hope of finding a trigger (if indeed she has one).

Cheers

[Alexandraog]

Hi, I am new to the forum, but have been reading it for some time now.
I have complex partial seizures, usually once a month... Presumably catamenial epilepsy. I am going to try prometrium (progesterone in a pill form) and will report after a couple of months with an update.
By the way, anybody here had the onset of epilepsy after pregnancy? It looks like my seizures started after the second pregnancy, and I must add that the two pregnancies were right together, like only 7 month between the first delivery and the second pregnancy...

Want to add that this is a great forum, very supportive.

[jyearta]

It may be worth a shot but they have only tried me on one anti-epileptic drug and I wonder if this is premature.

It has always taking 2 medic. for my E. I know all medic. have side effects, just thinking you might want to talk to your neur. before going the other route. I'm saying this, because hormones have added to my seizures in the past. I'm 60 now that was a LOOOONG time ago.

[LJ-Bain]

Aaron: of course you are welcome to comment on the ladies only chat! Especially if it helps a lady friend! My seizures are really sensitive to my cycle and to many women I beileve and if a trigger can be found then perhaps seizures can be avoided or at least decreased! I hope that will be the case for your girlfriend. Those seizure diaries really work.
Alexandraog: Let me know how the mini pill works out for you for sure! I know there are some ladies on the forum who are pregnant right now or who were pregnant after their diagnosis. My seizures began 1 year after my first pregnancy and has gotten significantly worse after my 3rd pregnancy. My littlest one is 1 now but things really went south 6 months ago. I am SURE there is a connection. My 2 youngest are 20 months apart...and welcome to the forum!
jyearta: I am totally holding back on the zoladex for now. I've called my neurologist twice but have yet to hear back but I'm still not ready to go forward so aggressively right away. Maybe one day in the future though. Hormones really do wreak havoc on our poor noggins.
RobinN: I do have to pay more attention to my nutrition...food is unappealing to me right now and I know it doesn't help when I don't eat. Plus, easter chocolate binges sure didn't help. It's hard to take care of ME when my whole family leans on me but if I did then everyone would benefit. What's the saying? If Momma ain't happy then ain't nobody happy!

[Alexandraog]

LJ-Bain: Hi LJ, looks like our cases are very similar. Just a question: were u able to keep the seizures under control with your meds? I have only tried Lamictal and could not bear the side effects... This is why trying to go the "progesterone way" now... PS. I have three daugthters, 8.5, 7 and 2. Each pregnancy made my seizures worse... But love the girls to death!

[LJ-Bain]

Hi Alexandraog!

So far I have only had a moderate amount of success with my meds. They have only had me on Keppra for 2 months though. It helps for 4 or 5 hours and then they (mainly simple partials, sometimes complex) return and increase in strength till my next dose. I get about 5 daily on average and then during ovulation and the week before my period they increase. It took them years to figure out they were seizures because they weren't really recognizable at first.
LOVE my kids too. But my goodness they do take a toll on our bodies, don't they?

[Merc]

Sorry. Another man reading this post. I thought i was noticing a pattern with my 12 year old daughter and from what i have read/understand (I am a man!!!!) It confirms my suspicions.

[jonsey]

Amy had a very small seziure last night , seconds really. She due her cylce 29th . All the symptoms present , back ache, stomach cramps . On keppra since febuary , but been experiecing seziures once a month since march .

[LJ-Bain]

Bringing this one back to the surface again. Feeling a little desperate and I'm going to fill my Zolodex order tomorrow. It'll just be a test for one month.
Still scared scared scared. But my life is becoming just shy of untolerable to I'm going to take a stab at it and I will let you all know. I still have to get it, and then make the appointment for it to be injected but I will be a guinea pig for anyone else interested.