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Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

SourceDepartment of Neurology, Cleveland Clinic Foundation, 9500 Euclid Avenue, OH 44195, USA.

Abstract

OBJECTIVES: To describe the clinical characteristics and laboratory findings of cluster headache patients whose headaches responded to testosterone replacement therapy.

BACKGROUND: Current evidence points to hypothalamic dysfunction, with increased metabolic hyperactivity in the region of the suprachiasmatic nucleus, as being important in the genesis of cluster headaches. This is clinically borne out in the circadian and diurnal behavior of these headaches. For years it has been recognized that male cluster headache patients appear overmasculinized. Recent neuroendocrine and sleep studies now point to an association between gonadotropin and corticotropin levels and hypothalamically entrained pineal secretion of melatonin.

RESULTS: Seven male and 2 female patients, seen between July 2004 and February 2005, and between the ages of 32 and 56, are reported with histories of treatment resistant cluster headaches accompanied by borderline low or low serum testosterone levels. The patients failed to respond to individually tailored medical regimens, including melatonin doses of 12 mg a day or higher, high flow oxygen, maximally tolerated verapamil, antiepileptic agents, and parenteral serotonin agonists. Seven of the 9 patients met 2004 International Classification for the Diagnosis of Headache criteria for chronic cluster headaches; the other 2 patients had episodic cluster headaches of several months duration. After neurological and physical examination all patients had laboratory investigations including fasting lipid panel, PSA (where indicated), LH, FSH, and testosterone levels (both free and total). All 9 patients demonstrated either abnormally low or low, normal testosterone levels. After supplementation with either pure testosterone in 5 of 7 male patients or combination testosterone/estrogen therapy in both female patients, the patients achieved cluster headache freedom for the first 24 hours. Four male chronic cluster patients, all with abnormally low testosterone levels, achieved remission.

CONCLUSIONS: Abnormal testosterone levels in patients with episodic or chronic cluster headaches refractory to maximal medical management may predict a therapeutic response to testosterone replacement therapy. In the described cases, diurnal variation of attacks, a seasonal cluster pattern, and previous, transient responsiveness to melatonin therapy pointed to the hypothalamus as the site of neurological dysfunction. Prospective studies pairing hormone levels and polysomnographic data are needed.

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I know on the menopause blogs those suffering with symptoms finally bite the bullet and choose Bio-identical hormone replacement therapy and it fix's things then they leave the blog. maybe the case here ,, I have found posts where the people taking the testerone (on this and other sites) talk about its success .. then they are gone. so maybe they no longer need support ? dont know

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Hopefully someone will supply an update. I do know that some who have tried it are still here. Likely works for some though not for enough sufferers to make it a RED flag of success.

Besides, what about the ladies??????? Trust me, Progesterone  won't stop 'em! >:(

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From a post written Nov 26, 2010, on the general board titled "Chronic old timers", I (alleyoop) wrote:

[highlight]In April, 2008 my neuro showed me an article written by Dr. Todd Rozen about using clomiphene citrate on a patient with CCH.  My doc wrote me a script for clomiphene on the spot.  It took me about 4 months to finally make up my mind to give it a go.  That was August, 2008 and I haven't looked back.  This drug literally gave me my life back!  I went from about 3 to 6 high kips a day, to 1 or 2 very low kips a week, with all of them coming in the evenings around 7:00 to 11:00.  Before clomiphene, the hits were all over the place, including the dreaded wake-up hits.[/highlight]

Dr. Todd Rozen's article is attached.

Clomiphene_in_CCH.pdf

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Thanks spiny, but it's not all good.

I took clomiphene citrate (brand name, Clomid) for over four years, in all likelihood, the longest anyone anywhere has ever taken this drug.  I went from refractory chronic to episodic.  My last cycle started in Nov, 2011 and ended Jan 11, 2012.  After finding that my vitamin D levels were low, I started supplementing with 100,000 iu's of D3 weekly for two months, and then cut it back to 10,000 iu's daily, where I remain to this day.  I was also busting every five days, and it took about two to three weeks to go PF. 

After being PF for a couple of months, I decided to drop the clomiphene to see what would happen.  Nothing happened CH wise, and I am still PF to this day, but continue to bust whenever I feel a couple of twinges which has worked so far to stay out of cycle. 

But there were side effects that didn't show until I stopped taking the clomiphene.  When I stopped, I developed Peyronie's Disease.  You can google it, if you're not familiar with it.  This could have been very traumatic, but at age 64 and considering that I now have a life again, it is not that big of a deal to me.  I just use my pole to fish now.  ;D

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Don't know why or the eventual long term outcome for those who tried it

I tried it a couple years ago.  Didn't help, but there are definitely people that have gotten good relief.  My thoughts are that anyone with even slightly lowered T levels should try it, just to rule out the possibility... 

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Can you tell me please what is clomid ? 

Clomid is the brand name for clomiphene citrate which is a fertility drug prescribed to women to increase their chances of getting pregnant.  If you read Dr. Rozen's full text article (which I attached above), you will see the reasoning behind the off label use for CCH.

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Not really Kevin, except the timing. 

I developed Peyronies disease within a couple of weeks after stopping taking the clomiphene.  There was also one very noticeable side effect while taking clomiphene -- a marked decrease in sexual drive.  At the time, it was a trade-off that I could live with though, considering how well it worked on the CH. 

I now have my sex drive back, but find it very hard (no pun intended) to do much with it.  :P

If you ever want to do some fishing or just get away for a weekend, you're always welcome to come up to the mountains for a stay.  :)

Bob

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