Tell ya what, I have an appt on the 9th and I will request the test be done. It was well in the normal range last time, but it's worth a shot.

B

I am not promoting a c_ _ _  but rather a better management solution that may work for some.

There appears (in what I have read and heard from my Dr.) to be a correlation between poor hypothalamic function and poor response to traditional meds (incl O2)and slightly lower testosterone. In these cases the testosterone therapy seems to have been shown to have a high success rate for those that have tried it.

I would encourage those that struggle to find relief with the arsenal of meds available to be first in line to get their testosterone checked.

My case definately fit the profile of unresponsive to all treatment methods...and when tested my testosterone level was low (I was in cycle already so we did not have a baseline testosterone level from a remission period to plot the change...which usually occurs during CH cycles)

...how many doctors are out there have tried testosterone with their patients or are trying it (like mine) and then do not follow up with a published report so that the world gets another reference to find on the internet?

Hopefully we will get some more results to share here.

UnderTheRadar wrote on Jan 1^st, 2009 at 6:32pm:


I guess it depends what a test costs. Here in Ontario where the tests are free (well not really....you should see my high taxes  haha) I wish I had a test done out of cycle for a comparable base line...to gauge how much the testosterone drops when in cycle....the Dr. said this would have been nice info to have.

After i am in remission for 6 weeks he will do another blood test, expecting to see the levels spike up and then adjust the testosterone dose lower or maybe eliminate it entirely until the next the cycle is due.
My Dr. won't talk about it until early February because he has gone on a one month medical research trip to the Antarctica!!!
Paul

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 

No way, Max, that can't POSSIBLY work.  I've been taking those "supplements" orally for YEARS....

I did get my testosterone tested and was within the normal range.  I was hoping for a "silver bullet", but for me, this was NOT it.

I hope and pray that the testing for Testosterone and replacement therapy is helpful for many!

Ray

Ray wrote on Jan 2^nd, 2009 at 12:13pm:



I am glad you had it tested Ray.

You should have a test done "out of cycle" and "in cycle".

Low testosterone is not the real factor here as much as is the difference or drop in level beyond which a cluster threshhold will get kicked into action.  A person with a high testosterone level out of cycle could have a significant drop in serum testosterone "in" cycle and still be in the middle of the "normal" range....It is the change which is significant.

However...if your Dr. does not know your out of cycle Testosterone result, there will be little chance that he/she will prescribe a supplement if your "in" cycle number is in the normal range.

If he/she has the base line information and sees a significant drop when clusters kick in, then a testosterone therapy may be tried to keep you in line with your normal "out of cycle" results.

TESTOSTERONE WILL NOT HELP EVERYONE'S CLUSTERS....but it may help some...possibly many.

Paul

UnderTheRadar wrote on Jan 2^nd, 2009 at 8:28pm:



Good question. 

If you know how long you expect your remission to be, split the difference, ....if not ...you may want to wait a month or two before doing the "out of cycle" test.....just a guess on my part.

Wonder what hoops the VA will put me through for this   Sounds promising for some and for those who have had success-congrats!!!

PFDAN y'all
kathy

It's interesting to read this today, as a pharmacist that I work with told me yesterday that she has a client that comes in for CH meds due to her labile thyroid. I don't really get the pathophysiology of it, but this woman's thyroid goes from hyper to hypo active and it causes her to have CH's.
Have to review my anatomy to rememebr how the thyroid influences sex hormones.....