Has anyone ever had testosterone or estrogen replacememnt therapy?

[forward2007]

If so, how did it affect your seizures? I have had low testosterone for at least three years and might be getting testosterone replacement shots.

[Nakamova]

I think clinical studies have shown that supplementing with testosterone hasn't been shown to help with seizures, though it can help with other issues. Are you on an anti-epileptic drug right now?The meds have been linked with causing low testosterone.

[forward2007]

I have been on Tegretol/Tegretol XR since 1987. I recently read that Tegretol lowers a person's Testosterone level.

[Frink]

Testosterone injections and an estrogen blocker is the only thing that has controlled my seizures.

Things have also gotten better since treating my anemia, improving my diet and getting regular exercise.

Tegretol is known to cause low T.

[RobinN]

I don't have seizures, but I have used a bio-identical estrogen and progesterone cream. I was also prescribed testosterone cream which I used sparingly. We were making the attempt to push my hormones back into balance. It actually worked very well, for what I wanted them for.

Rebecca was prescribed by the same doctor some bio-identical progesterone cream. It was to balance the estrogen rich environment her body was creating. This particular doctor did test often to make sure the body was accepting it properly. However, when we began getting the prescription from her Epileptologist, I didn't see any protective testing being done.

Also, Rebecca was not very responsible in using it morning and evening. I had to prompt her (about everything). The missed use, and sometimes daily misuse, was to my mind more problematic. I didn't want to see issues occur that were from non-consistency. So I decided to look into why her body was not balanced in the first place. That led me to hormones, liver function, insulin levels, etc.

I would be leary of a shot. I think the benefit of adding in the hormone slowly and carefully each and every day is much more normal to the system.

** Welcome Frink.... great to know you found a solution.
I offer a suggestion that you post your story up in the foyer, so others can learn from it.
Hearing positive results can be very encouraging to others.

[Frink]

I had tried the Androgel transdermal testosterone, but it was not working properly for me and I had 2 major concerns with Androgel.

1, The cost was way to high.
2, The ease that the T could be transferred to others through personal contact. The though of my wife with a beard was too much to bear:-)

Living on a fixed income, cost is very important.

Like lamictal, the cost of Androgel was to high, it costs the same for a 4 month supply of Androgel (or a 3 month supply of lamictal) as it costs to treat my seizures, hormones and chronic pain for a whole year using the inject-able T, estrogen blocker and pain meds.

The inject-able T is oil based and is slowly absorbed into the body, there is a peak in blood levels after 72 hours and a slow taper down until the next injection.

I have had no negative side effects from this, I had a LOT of side effects on anti-epileptic drug's.

[RobinN]

Very interesting.

I do understand the issue of cost. I no longer see my miracle doctor, because he does not accept my insurance, my insurance would not accept him, and thus my daughters issues took priority over my flatlining.

It is wonderful to hear that you found a more natural approach to your treatment. No need for an anti-epileptic drug when it is not necessary.

[forward2007]

Here's an update on the Testosterone situation with more info:

I was having 4 or 5 symptoms of Low Testosterone (ED, fatigue, lower insulin sensitivity, and most importantly, seizures). I finally went and got tested. The first time I got tested for Low Testosterone was 2 months before I got officially tested and diagnosed for Sleep Apnea (I now sleep with a CPAP Machine). This was back in 2007. I never put it together until now that it could be the Sleep Apnea causing the Low Testosterone. I have now had my Testosterone levels tested 3 times since 2007. The normal range for Testosterone is 241-827. The first time I got tested and my level was at 243. The Endocrinologist said there is no problem!!!!! This is after I had told him about the symptoms of Low Testosterone I had been having for awhile. I have had Epilepsy since I was 5 (I'm 41 now) but the seizures had been under control for 20 years. I didn't realize until very recently that the reason my seizures came back was Low Testosterone.

The 3 times I had it tested, my Total Testosterone level tested as 243, 345, and 255. (The normal range is 241-827). My Dr. said a 41 year old male should be between 400 and 500).

My Free Testosterone tested as 9, and 10. (At least this is in the middle of the normal range).

I have been taking DHEA which is an OTC supplement that converts into Testosterone. Yes it is legal. I take 5mg twice a day. When I tested as 255 for my total Testosterone and 10 for my Free Testosterone, I had been taking the DHEA for a month. I wasn't really happy for testing as 255 while taking the DHEA but at least the Free Testosterone is at 10 which is in the middle of the normal range.

[RobinN]

Why not use a testosterone cream. One that you can control depending on how you feel. With a pill it is one size fits all.

Good to know you have something to target.

[forward2007]

Here's a website that lists the side effects of Tegretol. And yes it mentions lower Testosterone.

http://www.drugs.com/sfx/tegretol-side-effects.html

[forward2007]

The Dr. recently gave me a RX for Testosterone replacement shots. I will get the RX delivered next week. I am already thinking though of getting off the Tegretol in the not so distant future and just take the Lamictal. I will have to see what the Dr. says. That way hopefully I won't need the Testosterone shots forever.

[sbncmo]

My husband doesn't have epilepsy, but he does have low T. He was tested 3 years ago with a level below 200. He chose the injections because of price - no insurance, but because of income, get a major discount at clinic. Anyway, he wasn't feeling any better after all this time & a couple of months ago was retested - barely over 200. So his dosage was doubled. He said he feels good for the first 2 weeks after the injection, but the last 2 weeks before the next injection he feels terrible. He is being tested again next month & may still need an increase. The levels given for a 40-something male are correct here, 400-500. And when it is low, it affects many things in a mans body.

Anyway, like I said, he doesn't have ep, but does have low T. I was honestly surprised that a man would mention low T. I've been on other medical forums asking about low T & nobody will respond.

Well, I hope an increase in your Testosterone will improve your seizures. I'd sure like to see my husband's improve, again even though it isn't ep related.

Shelia