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fxneuro

Testosterone Study

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The Florida Center for Headache and Sports Neurology has a current ongoing open label study on the use of testosterone in episodic and chronic cluster headache. If you are interested in paraticipating please call 1-877 OI THROB or 772-337-7272. As this study is investigator driven and does not have any pharma or federal support we cannot offer any reimbursement, only free care.

I plan on presenting the results at the IHS meeting in Boston next year.

Dr. Frank Conidi

Director.

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Hey David. Did you have the procedure that You had scheduled?

I've been wondering about you man. I hope you are doing relatively well. Good to see you on the board.

Your friend

Dan

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I just left a voicemail, then I dialed 0 for the operator. The office manager said she didn't know anything about the study...go figure.

They have my name and number >:(

Dan

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Ok, I Have a few details.

I talked with the doctor in Florida.

He wants blood work showing PSA and Testerone levels. If they are normal or high, one is disqualified from the study.

One also has to be IN Florida to participate.

I'm out but to quote RP McMurphy:

At least I tried goddamn it, at least I tried :)

Rons son Michael aka  Bonkers, has had some good results from testosterone so it might  be worth a try for any floridians.

Dan

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This is sad because most cant make it to Florida. I see no reason why the tests cant be done in the state you dwell in and have results sent to this guy in Florida.

It's a shame because his test is only localized, having less patients and less data making his study, basically a wash.

So my next question may be... How does psilo, lsd and lsa some how regulate hormones long enough after the substances are completely rid from the patients body for weeks,or months at a time?

Personally steroids were the only thing that has ever really worked for me, and this might be of benefit for someone like me. But if its just hormone testing and therapies, this can be done anywhere, even with your GP

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Could you go into detail just a bit of how boosting testosterone levels would control cluster headaches?

Personally i just don't see how it could do anything but worsen the condition. Speaking for myself I'm into bodybuilding for many years now. And i've noticed that an increase in hormones , or a supplement that boosts testosterone , can really make the headache condition extreme . Or lets say it can give u a headache on steroids.

my experiance anyways..

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There are several studies that support the idea this works for some.

Google testosterone cluster headache.

For one:  http://www.ncbi.nlm.nih.gov/pubmed/16732838

There is also a lengthy thread on ch.com with a good discussion.  All 18 pages:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1228226896

I applaud this new study, the researcher is funding this himself.  I too wish those in other areas could participate.

Hopefully those clusterheads in Florida will contact the Doc and get involved.

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Hey David, and all.

I was born in a male body with normal testosterone levels. About 6 years ago I started on a high dose of anti-antigen, to reduce my testosterone levels, and at the same took high doses of Oestrogen. It is believed that this change in my hormone system is what triggered my clusters, and I've had them ever since.

There is strong indication that such changes in hormones affects the hypothalamus, which we all know is the centre for triggering clusters.

I believe there is a strong and direct link between testosterone and clusters. I now have a normal T level for a woman, but it is naturally lower than it was when I was a man. My doctors don't think that if I raise my testosterone it will help my clusters, and quite possible cause other unwanted changes. :(

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Thanks for that reply i really wanted to ask that question. But certainly didn't want to pry into anything personal. I will find out Thursday what my levels are and whether i will be in this study. I am so excited to have met a good doctor and found this site. I am truly starting to feel like I am not going to hopelessly suffer with this forever. It doesn't hurt that with the prednisone i have had 4 days without any pain so i feel like i'm getting my sanity back. Sucks we all had to meet up here but i'm glad to have found good people willing to help

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just got another set of results. looks like my free testosterone is super low. I don't know the difference between that and the testosterone results i got yesterday. But maybe this free testosterone could be the culprit.

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Shot on thursday. Got hit that night but only like a kip4. Friday was a good day, Saturday an unbelievable day not even a slight shadow. The rest of the week has been awesome!!!! I'm so excited. My kids told me to tell the doctor they love him for giving them dad back. Went surfing and playing ball with my son all day sunday and not even the slightest shadow after a full day in the sun!!!!!!! If it is that easy for me to get back to normal after 4 years of hell. I'm gonna be so happy ;D

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Several times I have had the same feeling. I've got this thing whipped.

Be careful not to bet the ranch on it...yet ;)

I REALLY hope it works for you, if I were in Florida; I'd be right there with you.

Just know that it might not be the cure that  you ( and the rest of us)  are looking for.

Again, I hope you are fixed. You will also help others of this works.

I have had my heart broken more times than can count by getting relief from one thing or another only to be WHAMMED when I least expected it. It is devastating.

Those are the times when I was at my absolute lowest

I hope you don't take my post the wrong way. I will watch your posts/progress for continued success. Thanks for sharing your story :)

Nothing but love, Captain.

Dan

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I definitely don't take your post the wrong way. I have that same feeling lingering in the back of my head. If i do have to fight again this break has given me some much needed strength. I really appreciate this site and the support i have gotten from all.

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Good on you Scotty.

If there is any truth to the saying...What doesn't kill you, makes you stronger

We are a bunch of strong dudes and dudettes :)

Continued pain free time Captain. Please keep us up to date.

Dan

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Ok so 7 days completely pain free. then friday i got a visit. saturday shadows all day visit that night. sunday shadows all day another visit that night. went to neuro today he suspects testoterone level dropped again so i got a shot today. Hopefully that will get me into some more pfd. Keeping everyone posted with the good bad and the ugly. After being chronic for 3 months the 7 days were awesome. Hopefully we can adjust levels to keep me pain free. 

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