New CH.com Forum - Print Page

New CH.com Forum
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Testosterone replacement makes CH worse http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1347620880 Message started by John B on Sep 14^th, 2012 at 7:08am

Title: Testosterone replacement makes CH worse
Post by John B on Sep 14^th, 2012 at 7:08am

I have low T so started getting shots every 3 weeks. I found that the CCH got much worse at the peak plasma level point, then got a bit better until the next shot. My urologist put me on Androgel so that I could better titrate dosage. After a couple of years, I can say for sure that, in my case TRT of any kind leads to the worst CH with 6 or 7 attacks per day. If I stop taking any testosterone, I get one, maybe two or three, but always at night and not as hard to abort

Reading up on TRT and CH I find that many of us are having the opposite experience, where replacement therapy is effective in reducing or eliminating attacks.

Does anyone have any insights about what is going on here? BTW, I'm chronic 23 years, and definitely NOT a newbie.

Title: Re: Testosterone replacement makes CH worse
Post by Bob P on Sep 14^th, 2012 at 8:31am

Hi John. Been a long time. Sorry to see you're still fighting the battle. Best to you.

Title: Re: Testosterone replacement makes CH worse
Post by IndianaJohn on Oct 10^th, 2012 at 11:18am

I've taken Andrgel too. It was fairly neutral, neither making things better or worse. However, I did come off of the andrgel and have NOT had any hits at all.

Title: Re: Testosterone replacement makes CH worse
Post by ttnolan on Oct 10^th, 2012 at 6:48pm

There is a study being done in Florida now with results out next year that will be interesting. I know of one person getting good relief from the treatment.
As for your question, I have a theory but nothing really to back it up. I think it is all about "free testosterone". While our total T level may be good, having elevated levels of SHBG (binds to the T making it unavailable), would cause the low "free T" problem. I know of several cases where total T was looking pretty good, and free T was low.
It could be your body is for some reason not able to benefit from the extra T, and having too high T does make CH worse for you. Just food for thought.

Title: Re: Testosterone replacement makes CH worse
Post by John B on Oct 11^th, 2012 at 7:24am

Thanks to everyone for your replies. Bob P, great to hear from you. I'm going to visit with a new neurologist and headache specialist on Friday and plan to discuss Possible endocrine disorders. About six months before the chronic cluster headaches started, I suffered a skull fracture. This is never been considered to be a factor in the origin of the cluster headaches, but with the new focus on traumatic brain injury, I think it's worth another look.