CH, drugs and sex drive...

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Posted by Steve A ( on February 14, 2001 at 15:59:12:

In Reply to: where did the sex go???? posted by maddog on February 14, 2001 at 12:43:35:

I am 40 years old and have had CH since I was 15 or so. I used to try a lot of headache drugs, including verapamil and sansert, and I never got any lasting relief. I don't remember the effects of those drugs specifically, but I often found that the drugs made it harder for me to get erections. And my sex drive would decrease during clusters anyway, as TomM & Riccardo said.
After several years of trying drug therapies, I finally gave up because it seemed like the drugs didn't help, and I was very susceptible to the side effects.
Then, in 1997, I experienced a complete loss of sex drive, lasting several months, and asked my doctor for a testosterone test. Doctor tested DHEA, which is not the right test for testosterone. At the same time, test showed I was hypothyroid. I switched doctors after a year or so, and got a testosterone test, and found out that was too low also. Had no CH for the two years where my testosterone was too low. Then, I got testosterone injuections, and after a few months, the CH came back. Normally I would have one 6-week cluster starting in November or December, but this new cluster was in summer.
I did not like taking the testosterone, and stopped after several months. I believed that my own level would pick up if I stopped taking testosterone, and it did. Now I have a low normal level, which turns out to be enough to have a sex drive, and erections. Also, enough for CH: I am just finishing a cluster.
I tell all this because I personally believe that all the drugs I took for CH screwed up my system. My doctor doesn't agree. But I feel like my system may have been sensitive in the first place, and the drugs knocked it out of whack.
Maybe you want to check out your testosterone level. If you do, it is important to get your "bioavailable testosterone" checked, not just your overall level. My overall level was not too bad, but bioavailable was way low, and that's what made the difference.
I agree with what TomM and Riccardo said, but it is also possible that something is wrong, and you should check it out.
If I had ever found a drug that worked for CH, obviously I'd still be taking it. But I am unwilling to experiment, when nothing seems to work. On the other hand, I just found this site, and tried the LSD cure, which seemed to have weakened the cluster, although it is hard to tell since my cluster should be over anyway). I am also experimenting with aromatherapy, which also seems to be helping. GOOD LUCK, ALL!

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