Zoladex guinea pig reports for those with catamenial epilepsy...

[LJ-Bain]

I had my third injection today of Zoladex.
Apparently this is the injection that is really going to tell us if it is making a difference.
We shall see.

Also he told me to start the estrogen and progesterone tonight and that I should see the effects in 3 days. I am terrified! It feels like I will be undoing everything that I have strived to do.
Since this therapy stops ALL estrogen and progesterone production this is not healthy.
Even in menopause there is some estrogen production.
Arrrrgh!
Things remain the same. I still have yet to have a seizure free day.

[Nakamova]

Good luck! I hope you get some positive results.

[KarenB]

I know next to nothing about hormones, but wondering...what about going on the pill, but on the week that you don't take any (or taking the placebo tabs) to have your period -- just keep taking the regular ones...haven't taken birth control pills in 12 years, so can't quite remember how it works...

...but I'm thinking, can't you just use the pill to regulate your periods and prevent periods -- so you're still getting all the hormones, but just not having that big change during your period?

[LJ-Bain]

I went to this gynecologist hoping for something simple like that.
I wanted to have a progesterone only birth control with it taking estrogen out of the picture altogether but I think he wanted there to be absolutely no hormones to really see if this helped.
No roller coaster hormone ride. Just nada. Just to rule out any catamenial connections.

And actually...I only tried birth control pills once when I was 18 for 3 months and then never again. Almost 20 years ago now!

[LJ-Bain]

Irritating and painful side effect of the hormones...stomach cramps.
It is a common side effect. Like wake you up in the middle of the night cramping.
I know it's the meds and not just a bug because it's been like this ever since I have started the hormones a week ago.
On a positive note though I haven't noticed an increase in the seizures due to the hormones. The estrogen and progesterone really do seem to cancel each other out.

[Nakamova]

Sorry about the cramps. Is there anything you can take for them, or do you just have to deal? Glad the seizures are stabilized though.

[LJ-Bain]

I try to take tylenol. They happen mainly at night and in the morning since I take the hormones right before I go to bed. I was very happy to find the hormones aren't increasing things. Normally just 3 seizures daily.

[Nakamova]

If it's a muscle cramp, sometimes a little bit of heat can help -- like a heating pad or a warm bath. A magnesium supplement might help too.

[LJ-Bain]

Today I had an appointment with the gynecologist and we have decided not to do anymore Zoladex injections and see what happens. So the catamenial connection has been solidified with this experience. It will take 4-8 weeks to get back into the normal swing of things. Soon I will be making my own hormones again. Yippee??
I hope this will be an easy transition.
If things greatly increase again then he suggests an ovary removal although I'm not a big fan of that idea. My body though. My decision.
I'm not sure if I would do this again but for those whose seizures are only catamenial then perhaps this is a good experiment for them to try.
It certainly did not bring me back to the seizure free days when I was solely nursing my babes for their first 6 months of life. Oh well. It was worth a shot. No pun intended.

[Nakamova]

So no discussion of the progesterone option?

[LJ-Bain]

In his opinion just giving progesterone will not balance out the rollercoaster ride of hormones enough.
He's of the all or nothing mentality.
I suppose I could push him on that and see if he would consider that route at all but quite honestly, I think I will ask my epileptologist next time.
My epileptologist does think there is a catamenial connection so perhaps he would have some ideas. If not, then I would have to stand my ground with gynecologist and push for that option. Not oral progesterone though. He even agreed that those unpleasant side effects I had were not great and that a differently inserted method would be the way to go.

[KarenB]

I keep thinking that if you do a low dose birth control pill, and then skip the week where you're supposed to have your period, that it might work. Basically, it would be keeping the hormones at a steady level. The only thing...if you never have a period, what about all the build up in the uterus that isn't getting sloughed off?

I had uterine ablation surgery about 7 years ago (it was a new thing back then, don't know how many gyns do it now). They call it rollerblade surgery -- it's outpatient, and they go in and burn the lining of the uterus, so you don't have periods anymore (or very light ones), but still have hormones doing their thing.

So...maybe a combo of uterine ablation and birth control pills that skip the period week?

[LJ-Bain]

I would love to try that method of a low dose birth control, or progesterone only mini pill.
I just have to have someone prescribe it. The thing is, I have had my tubes tied. I do not need birth control so I would only be having the birth control for treating the seizures so it is trickier for me to get the prescription. I would have to push for that. My GP is friends with the gynecologist so he doesn't want to step on his toes. Argh!
The uterine ablation surgery sounds very interesting! I'll have to look into that.
I guess when you don't have any hormones the build up in the uterus doesn't occur because it isn't preparing for a baby so it doesn't need to shed anything when it finds there is no baby? But I wonder what does happen when you are on constant birth control?
It's all so confusing.
I'm not sure what to do...especially because my seizures are not just catamenial.
I wonder if it is all worth it just to avoid a few bad days when things happen daily anyways?

Thanks for the info though KarenB!! More food for thought which is always good!

[KarenB]

What are the chances of finding a neurologist that specializes in the "CAT" seizures? We actually drove 2 counties over (3 hour roundtrip), to get Jon to better doctors.

You might want to try googling or just calling around the neurologists connected with teaching hospitals to see if you can find someone.

[LJ-Bain]

It's a little different here in Canada but I should fish around and see what I can find.
Thanks.

[MaryK]

LJ... Hope you do not have a difficult time returning to 'period status'. Glad to see you are willing to give a minimal dose of progesterone each month a try. The research is really quite good regarding catamenial seizures and periomenopausal seizure activity along with menopausal seizure activity..

PS Thanks for giving it your all in trying something that could hold promise for other women.

Mary

[LJ-Bain]

Thanks MaryK!
Once my hormones return and things turn upside down I will try quite a few different things to reign them in. I'll have to have a nice chat with the gyno!