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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Testosterone follow-up
        
(Message started by: Squanto on Nov 5^th, 2006, 9:34am)

Title: Testosterone follow-up
Post by Squanto on Nov 5^th, 2006, 9:34am

Several months ago there was information on this board regarding a small study (9 patients who were suffering "intractable" cluster headaches) done at the Cleveland Clinic. Some of their patients had measured low or below normal testosterone levels. Some got relief - others didn't. I have the complete article, that was published in the journal Headache, in pdf format. If anyone's interested send me a PM. I don't know how to link a pdf on this board.

Anyway, in the course of trying to diagnose another problem my serum testosterone was found to be "borderline low." And verfied upon repeat testing. I've had no signs or symptoms of low testosterone. I posted a note on this board saying that I was going to discuss with an endocrinologist the possibility of a trial of testosterone supplementation/replacement.

Bottom line:
She has vetoed the idea. Her reasons: (1) the study is "too small." (2) over the 9 patients there was no consistancy of treatment (3) there's been no follow-up information - i.e. no long term information.
When I gave a copy of the article to my neurologist, his response was the same with one addition. If the testosterone works, "What's next?" He feels this treatment holds a lot of hazards for person my age (71) and long term treatment with testosterone would not be a good idea in my case. My counter was, "But at least one of the meds you've prescribed has sudden death as a possible side-effect!" He just gave one of those grimaces we all hate to see.

So, until Cleveland Clinic does a more detailed study - I won't be getting testosterone supplementation.

Anybody else had any recent experience treating CH with testosterone?

Squanto

Title: Re: Testosterone follow-up
Post by BB on Nov 5^th, 2006, 6:16pm

Low or borderline testosterone in otherwise healthy males with no symptoms are occasionally found incidentally while doing general blood tests, not just in clusterheads.

Drs at the Sydney Pain Clinic are keeping an eye on my husband's testosterone levels but he is not getting any hormone treatments.

Unless the level is clinically and/or symptomatically low, there is little in the way of literature and practical experience amongst the endocrinologists that treating it brings any effective results, but risk exposing the patient to potentially grave side effects.

If your level is borderline, maybe its a good idea to monitor and see if it drops further, if it does then discuss it again with your endocrinologist.

Good luck and painfree wishes to you.

Annette

Title: Re: Testosterone follow-up
Post by Squanto on Nov 5^th, 2006, 7:29pm

I guess I didn't make my self clear in my first post in this topic. (not a big surprise, huh ?)

I'm not worried about the lowish testosterone lab results. I was asking the endocrinologist to possibly let me try a short course to see what effect, if any, exogenous testosterone supplementation would have on my cluster headaches. As far as I can determine, I don't have any contraindications to the hormone except that I'm a 71 yr old male. Prostate, liver, heart, etc are okay.

If it weren't for the Cleveland Clinic study I wouldn't even be talking about this. In my view, most recently trained MDs in the USofA treat lab results more vigourously than they do patients. They'd rather read a lab test and treat based on that than do an adaquate history and physical. I'll probably be dead of old age (or shot by a jealous husband) before the Cleveland Clinic study is confirmed or refuted. End of rant.

Squanto

Title: Re: Testosterone follow-up
Post by Gator on Nov 5^th, 2006, 8:41pm

Here are a couple articles that lead to the interest in testosterone therapy for clusters:

Quote:

Eur Neurol. 1985;24(1):53-6.

Use of testosterone in the treatment of cluster headache.

Klimek A

The study was carried out on 15 men suffering from the episodic form (12 patients) and the chronic one (3 patients) of cluster headache. Before treatment the patients did not receive any drugs, and after determining the index of attacks the treatment was commenced. For 7-10 days patients were given testosteronum propionicum (25 mg) once a day intramuscularly, and then for the same period of time testosterone (10 mg). Before treatment the index of attacks was 3.66 (total number of attacks 308). In the 1st week of treatment the index decreased to 1.11 (total number of attacks 94) and to 0.16 in the 2nd week. In 3 patients with the chronic form of cluster headache testosterone was ineffective.

PMID: 3967676

Quote:

Headache. 2006 Jun;46(6):925-33.

Testosterone replacement therapy for treatment refractory cluster headache.

Stillman MJ.

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.

PMID: 16732838

Title: Re: Testosterone follow-up
Post by rhino on Nov 5^th, 2006, 11:08pm

I tried it and it helped, I have been in cycle 7 months and have ingested every drug associated with cluster headaches.
I was ay my regular doctor for another reason and told him that I had read about people using testosterone as a treatment. He scratched his head and said it sounds reasonable to me. He gave me an injection that day.
About 3 days later I experienced my last Kip 7 or 8 headache. I recived another injection about 3 weeks later.
I am still experiencing Kip 3 or 4 shadowing.
I went to my neurologist to talk to him about this and was given a wave of the hand and told he did not want to talk about it,, nothing proven.
I am not sure where I am going with this. All I know is I am in this cycle and about 2 months ago I "think" I got a little help from those injections. [smiley=cowboy.gif]

Title: Re: Testosterone follow-up
Post by unsolved1 on Nov 6^th, 2006, 12:20am

My level was within the normal range but on the lower half. After seeing the article above posted, I mentioned it to my local neuro who said we'd give it a 'shot'....so I recieved a 100mg injection of testosterone. I recieved a 2nd dose of it a few weeks later. I saw no noticable difference in the 'headaches' either way. I did seem to curse more though :-X ;;D

UNsolved

Title: Re: Testosterone follow-up
Post by BB on Nov 6^th, 2006, 12:24am

Hi Rhino,

Thats interesting !

Was there any blood test done to see what the level was? and was the injection Sustanon 250mg given as deep muscular injections ?

Thanks for the info.

Annette

Title: Re: Testosterone follow-up
Post by chopmyheadoff on Nov 6^th, 2006, 3:02am

iv used testosterone in varying amounts for bodybuilding on and off for a number of years.

it has no effect whatsoever on ch.

although the info sheet in the box says that high levels can agravate(sp) migrane

edited to add ==> hey , where has my picture gone ??

am i too handsome 8)

Title: Re: Testosterone follow-up
Post by Squanto on Nov 6^th, 2006, 7:11am

on 11/06/06 at 00:20:10, unsolved1 wrote:

I did seem to curse more though
UNsolved

Bloody Hell! I get that without extra medication!

Squanto

Title: Re: Testosterone follow-up
Post by rhino on Nov 6^th, 2006, 8:30am

Hello Annette

Did I get a blood test,, nope. What did he shoot me up with? I just did not ask, I guess it's a guy thing.
If it is of some importance to you or this group, I will ask and get back to you.
I am really reluctant to say to this group, it worked, I am not sure myself, maybe it was just time for my cycle to change.
I do not under how I can have this condition for 30 years and today I am still not sure what helps me. [smiley=cowboy.gif]

Title: Re: Testosterone follow-up
Post by chopmyheadoff on Nov 6^th, 2006, 10:05am

on 11/06/06 at 00:24:24, BB wrote:

Hi Rhino,

Thats interesting !

Was there any blood test done to see what the level was? and was the injection Sustanon 250mg given as deep muscular injections ?

Thanks for the info.

Annette

would the sustanon be the doctors first choice due to the 3 esters with different lenght half lifes ??