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

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LJ-Bain

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So tomorrow am I going to be given my first injection with Zoladex.
For those of you who are unaware this is a drug in pellet form that will be injected under the skin on my abdomen to be absorbed that will force my body into a menopausal state for one month.
I will be given hormones at an even rate to balance out the side effects that naturally will occur.
This is usually given to men with prostate cancer or women with breast cancer whose hormones worsen their cancer or I have heard also of people with horrible endometriosis using this.

I will let you know my personal experience with this if you are interested!
Now, to be fair, I may not be the best person to judge how this will change my seizures because there is an ongoing debate whether or not my seizures are psychogenic.
They are connected with my cycle though.

I do not know of anyone else attempting this personally (if you have tried this...please let me know your experience!!!) except a handful of others who also see this particular gynecologist who have catamenial epilepsy.
 
So is the idea that your levels of estrogen will drop, and you will be less vulnerable to catamenial seizures? Will they be keeping an eye on your progesterone levels too (since you don't want those to drop more than the estrogen ones)?

I really hope this works for you LJ, I've got my fingers-crossed.
 
Hope this goes well for you!

Please keep us updated.
 
For the heads-up on side effects and how to deal with them, check out the Hormonal Treatments section of discusiion forum at Breastcancer Dot Org
Meantime arm yourself with a big notebook for when your memory goes out the window and a little spray bottle of water to keep you cool through the power surges.
 
Yes, please keep us posted most interested in this journey with you to see how it goes. My thoughts and prayers go with you : )

Tina
 
Thanks guys!
Nakamova...I think you have the concept bang on. From what I have been told they will be giving both estrogen and progesterone so that I will have an even steady flow of the hormones with no fluctuations.
Because the first 6 months after my babies were born (not ovulating due to nursing) I did not have any seizures and they are hoping to duplicate this pattern.
Fingers crossed indeed!

Thanks for the side effects info bathtub!
 
I really hope this works for you LJ, I've got my fingers-crossed.

I am chiming in with Nakamova. I so hope this is the answer for you LJ. Keep us posted.

Mary
 
Interesting form of treatment :)
I'm curious to hear how it goes! Keep us updated :)
 
I really hope this is the answer you have been searching for! :)
 
So the injection of the pellet isn't too painful. They freeze the area and then just use a bigger needle to insert it under the skin of my abdomen. It will take a month for everything to fall into place and then I will take oral progesterone and an estrogen transdermal gel.
This will be a 3 month trial.
Things may get worse for the first 2 weeks with how the medication initially works so we'll see.

Thanks for the support! I'll keep you guys up to date.
 
So tomorrow am I going to be given my first injection with Zoladex.
For those of you who are unaware this is a drug in pellet form that will be injected under the skin on my abdomen to be absorbed that will force my body into a menopausal state for one month.
I will be given hormones at an even rate to balance out the side effects that naturally will occur.
This is usually given to men with prostate cancer or women with breast cancer whose hormones worsen their cancer or I have heard also of people with horrible endometriosis using this.

I will let you know my personal experience with this if you are interested!
Now, to be fair, I may not be the best person to judge how this will change my seizures because there is an ongoing debate whether or not my seizures are psychogenic.
They are connected with my cycle though.

I do not know of anyone else attempting this personally (if you have tried this...please let me know your experience!!!) except a handful of others who also see this particular gynecologist who have catamenial epilepsy.



Good luck LJ! I hope this is your magic bullet solution! *fingers crossed*

Jay
 
Thanks for the finger crossing.

I think I am now entering the initial increase of hormone production phase. Holy hannah.
Yesterday I had a slight increase in my seizures but today I had about 8 regulars and two clusterathons. One was 3 hrs and one was 1 hour. It isn't too bad. The seizures are under a minute but when they cluster I am so sleepy afterwards. My poor hubby had the kids all to himself for most of the day.
Apparently this will be 14-21 days of this and then hormone production will be next to nil.

No major side effects yet. I am grumpy but I can't say that I wasn't before! Ha ha ha! My husband is a saint.
 
So....I landed in the hospital for 3 days. My seizures had been picking up and increasing in strength and longer recovery. Then I had a clusterathon at work. They were stuffing ativan in my cheeks to no avail and when my hubbie came to pick me up he couldn't shake me out of it either. If I was at home it would have been different but because I was at work and he couldn't exactly peel me off the floor they had to call an ambulance. It was a different hospital who had never seen me before so they insisted on keeping me for "observation". My magnesium and calcium levels were low. I understand that Zoladex is not recommended for those with a history of osteoporosis. This is probably why.
Let's hope it's only 14 days of increased estrogen instead of 21. It is taking it's toll.
 
Oh my so sorry....Praying for you and the recovery periods sounds really rough. Sorry to hear you eneded up in hospital thats always the worse...The last time I was there for 4 days. Nothing. They didn't even do an exteneded EEG. MRI, EEG, CT all clean they did say I was slightly anemic though. I had 5 seizures the day I was admited though 2 in the emergency room. 2 at home, and 1 the room. Hang in there baby....

Tina
 
I would think there would be a better way to do this. I hope things get better soon...
 
Thanks Tina. It's amazing how even slight differences in our blood levels can trigger seizures. And sometimes it's amazing how little can be done...or how little is done. It sounds like that was a frustrating stay for you.
Nakamova: It does seem like there should be a better way of doing this, I agree. When I asked the Dr. about the initial surge of hormones because I did my research on how the drug worked he brushed me off saying...no, no it causes your hormones to cease. They don't always know how drugs work. Plus this is a gynecologist, not a neurologist so he really is not a specialist in seizures...just hormones. They are only human. And this is a gamble.
 
Very interesting.

We're pretty sure, even though I've had fewer than 5 seizures, that it's cycle related.

Just yesterday I thought I found an OB/GYN that was also a Neuro, I almost peed my pants. But then a little further research found that he probably isn't it was just a crappy listing. I'm still calling anyway, just in case.

I hope you're doing well, thanks for sharing.
 
LJ: So sorry this is happening. Maybe today will be better. Did anyone at the hospital call your doctor who prescribed this to let him know what was going on. Possibly he could augment with a little more progesterone to get you through the next few days. Don't know.. just thinking out loud.. I know you'll understand.
Take care.
Mary
 
Hey Mary K. My GP will get the report but not the gynecologist...I'll inform him but seizures really aren't his thing. Just hormones and acknowledging the connection between hormones and seizures. I have the progesterone and estrogen but I'm not supposed to start them just yet. I am seeing my neurologist on Thursday and I will ask his opinion. So many dr.s...so many specialities. I have stabilized which is good. Today was better thanks! If I can just keep my electrolytes balanced I'll get through this rough patch I think.
Thanks for thinking of options for me!

Chargingbird: Do you think there really are ob/gyns who are neurologists too? That WOULD be amazing! That would be one specialized field that's for sure. One can dream!
 
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