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

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I think if there was one neuro feild of study that should be looked into more its that one for sure... we women would go there go there hands down as first choice patients there would be waiting lists a mile long if it there could be proven effective treatments and a connection between it all.... imagine it...if they could cut down on all of theese drugs, and turn to more things like bio-hormones and things like that, more effective diet, I know I would prefer that over all of theese drugs I take. I am sure many of you are the same. Don't get me wrong I am thankful that the drug regimin I am on is keeping me seizure free for the moment (knock on wood) I still feel like a ticking time bomb every month.

Tina
 
This guy http://doctordavidclark.com/ seems to be a "big picture" neurologist who looks at how all the body systems (including hormonal ones) interact with the brain. But I bet he's a rare breed...
 
Wow. Definitely keep us informed. I hope this works. Just curious... why not a hysterectomy?
 
Hey Julie wishes...I think in the end if the zoladex does vastly improve things after three months the next step would be to remove my ovaries and fallopian tubes. Not my uterus I don't think. Just removing the hormonal aspect would be sufficient from what I've been told.
It would be great if things could be that simple. Can you imagine? No ovaries = no seizures. That would absolutely be a surgery I'd sign up for since I'm all done making babies now.
 
Lol :) I hear ya. But the no ovaries thing isn't so great I've heard. But no seizures would be fabulous :). Seems like if they are in there, why not take it all. Why leave the uterus considering possible cancer risks. Interesting. You know the female hormone system is quite involved. Very complex. Lucky because its how we make babies. But unlucky because so many women experience uncomfortable feelings as we move through our monthly cycles. I see where the thinking is here with your process. I hope it all works out.
 
A friend of mine had her ovaries removed pre-emptively because she was in the genetically high-risk group for breast cancer. No fun for her at all, because of the early menopause brought on by the cessation of estrogen. But it seems to have worked in terms of keeping the breast cancer away, knock on wood.
 
Juliewishes...I'm not absolutely sure about the ultimate plan if things go to the next level but we'll see! Maybe they would take my uterus too. He only briefly referred to it.
My mother-in-law had terrible endometriosis and had the works taken out after her 3rd child and she found the transition to be not so bad but I think she was in alot of pain and had ectopic pregnancies so it would have been different for her. Plus she was able to take hormone replacements.
Nakamova: That must have been difficult for your friend. And I bet she couldn't have hormone supplements because the estrogen was the very thing they wanted out of her system. I hope I didn't make light of the surgery. I'm sure it is no walk in the park. I hope she never gets breast cancer.

I saw my epileptologist today and he doesn't really think this treatment is worthwhile and is a shot in the dark but he doesn't think it's dangerous or anything. So many different viewpoints.
 
I saw my epileptologist today and he doesn't really think this treatment is worthwhile and is a shot in the dark but he doesn't think it's dangerous or anything. So many different viewpoints.
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So many many different viewpoints.. WOW!. Kudos to you LJ for hanging in there and trying to help yourself. What is the epileptologist's feelings regarding your seizures? Even if he does not think the treatment is worthwhile, I hope he keeps tabs on your results for future reference.

Glad you are feeling better and hope the storm has passed.
Take care
Mary
 
Thanks Mary! I believe the storm, the big hormone surge has passed now. Just 3 seizures today which is a good day! I don't regret the Zoladex decision yet...even if it reduces my seizures for a little while it's a good thing! It's hard to know what to think!
My epileptologist thinks perhaps brainstem seizures but the diagnosis from him is still yet to be decided...it's all so very confusing at times!
 
So...if anyone ever tries this do not be surprised if you still have "your friend" visit you within the first month. I thought for sure it would not...but it did. I get my next dose injected August 17th.
But yesterday I only had 1 seizure. They did just start me on Vimpat too so I do not know which to thank yet. But the day before that I did not have any seizures during my work shift (although just 2 in the a.m.) and that hasn't happened yet since I started work since March.
I am hopeful for this trend to continue.
 
I am so glad the seizures are reduced -- that's terrific, really great news. Perhaps your epileptologist will learn a thing or two and the next person with catamenial epilepsy who walks into his office will benefit.
 
It is FABULOUS Nakamova! I'm holding back on celebrating yet but enjoying the changes!
The true test will be once I am off the Zolodex and experiencing hormones once again in October and November.
 
Just wanted to say that after my last dose the surge was difficult yet again but reduced. No hospital visits! We have gone a month without going to the hospital! High fives all around! I had a cluster at work a week or so ago but there were able to break it with 4 ativan. I felt sorry for my coworkers who were stuffing them into my cheeks. I am forever saying thank you to them and I am grateful for understanding employers and coworkers.
I had 2-3 rough days but then it passed and I did miss my cycle this month so I do know that it is working. Yesterday I only had 2 seizures which is awesome. I don't count the simples though. They don't interfere with life and I can handle them. My head nodding and my hand twitching for 2 - 5 seconds are absolutely tolerable.
One more dose and then I have some deciding to do.
 
Anytime you can give the hospital a miss, that's a plus. I hope the seizures will reduce over time -- the cluster at work doesn't sound like much fun...
 
Well, thats good no hospital visits thats a good thing! I hate going to the hospital I am wondering about the Vimpat decision though but if it cuts the seizures down i am all for it. I am just thinking that it might make it diificult to see if this treatment path is really working or not. I was very firm with my neuro about putting me on another rescue med back in januaray when I was in Hospital when they raised my Topamax and Keppra levels I said lets wait and see and see if this holds first. he wanted to put me on something very additictive that i would take for like 2 weeks and then not for 2 weeks I can't do that I need to be able to work 5 days a week to keep my insurance....

Tina
 
It's true. I won't know if it's the Vimpat or the Zoladex that is helping me. Personally, I already feel that the lack of hormones helps me off the roller coaster ride when the hormone surge that I experience after the injection throws me for such a huge loop.
I didn't feel comfortable going with the Zoladex all by itself since I have daily seizures I know it isn't hormones alone responsible for my seizures.
The hormones don't help though, that is for sure.
The Zoladex is not a permanent solution for me...just something to try.
When I am done with the Zoladex I just have to think about whether or not I feel fond of my ovaries or if I want them "gone".
Now...if only I had a solid diagnosis then maybe this would be easier too.

Addictive drug? That sounds pretty potent. I only have ativan as my rescue med but I have tried clonazepam before. By the way, that is great that you can work 5 days a week!
 
Just as an add on...I get hot flashes now. Even in the middle of the night. So far I have been able to handle things without using the supplemental hormones. He said for me to use them only if things became intolerable.
 
That was what he wanted to put me on the clonazepam and I said no way... are you putting me on that drug! The drugs you have me on are bad enough I can barely function as it is and and keep up much less add another to the mix....

Tina
 
So far I have been able to handle things without using the supplemental hormones.
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If the supplemental hormones are estrogen-based, wouldn't that make your seizures worse?
 
Yes! I have free samples of both estrogen and progesterone! I guess the plan was to take an equal amount of both to even things out but I am going without. It is strange to do this through a gynecologist rather than a neurologist. He knows the lack of hormones help but I don't really get a lot of direction otherwise. It's kinda been left up to me.
My epileptologist thinks it's a load of hooey so I can't really ask him.
That's why I am going without the supplements as long as I can. I think I'll be able to hack it. I shall say NO to estrogen. Good on you Nakamova to emphasize that. I plan to embrace hot flashes that is for sure knowing what the alternative could be.
 
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