"Why don't we pay attention to this"....without reading the above named thread a year ago, what state would I be in today?

Thank Goodness people on this forum freely post any tidbit of CH information and personal CH experience on here, so we can each experiment and find the best coping strategies for these very individual headaches....one size definately does not fit all.

Thanks CH.com and all who visit this forum.

Paul
Headach free since December 2008, beginning exactly two weeks after starting hormone replacement therapy as suggested in the "Why don't we pay attention to this" thread.  Now I have far surpassed the longest remission of the last 30 years

Quote:

Now I have far surpassed the longest remission of the last 30 years

Which is absolutely cool in my book. But you are an experiment of one, to which I'd only warn that correlation does not necessarily equal causation.

Not that you shouldn't be happy. I think we all are. Just be on guard.

Bill,

There have been others who have also experienced relief w/hormone therapy, although not to quite the same extent.  I think it is definitely something that needs to be paid attention to.

Jerry

Callico wrote on Oct 21^st, 2009 at 3:31pm:

Bill, There have been others who have also experienced relief w/hormone therapy, although not to quite the same extent.  I think it is definitely something that needs to be paid attention to. Jerry

Never said it shouldn't, my friend. But each one who is doing this is participating in their own experiment of one. Waaayyyy too many variables. If one experiences relief, it might be due to something other than the hormone therapy.

Don't get me wrong - I'm all for whatever causes relief. But when the research is spread so thin and done in a onesy-twosy fashion, it doesn't really advance the cause.

Great news Paul... ;)

Since I became a member on this site I have read with great interest all the different treatments and therapies available to us as cluster patients. I also read with great interest the fore mentioned post on hormone replacement therapy.

I also believe it is worth exploring and hopefully it could be the silver bullet  for some individuals visiting this site today.

Below is an abstract on some other individuals who have gained relief through this method:

Author: Stillman MJ
Journal: Headache: The Journal of Head & Face Pain
Pub.: 2006-06-01
Volume: 46


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.




Lefty..!

Paul, that is the best news I could have heard today! May you remain PF for ever!
Doing the happy dance for you and any others that this treatment is helping.
Thank-you for the update. :)

Brew wrote on Oct 21^st, 2009 at 2:29pm:

Quote: Now I have far surpassed the longest remission of the last 30 years Which is absolutely cool in my book. But you are an experiment of one, to which I'd only warn that correlation does not necessarily equal causation. Not that you shouldn't be happy. I think we all are. Just be on guard.

Thanks Brew,

I absolutely agree with you.  I believe everyone has to approach their trials and failures of different strategies as an "experiment of one" and whenever one experiences relief we should "just be on guard"

I have enough years under my belt with CH to know  that "you never know" what is coincidence and what really works for any given period of time.

The first few months after starting this treatment, both my doctor and i felt that i might be experiencing relief because i really wanted that outcome (power of positive thinking)...as time passes and all previous remission records for me fall, I become more hopeful that this may be it for me....cautiously, for now.

I feel something has really changed...quite possibly a result of the treatment...maybe a miracle....or maybe God just said "lets give this guy a break for a little while"

Regardless, I am running with it and I am enjoying every pain free minute, living life to the fullest, thankful for the help/reassurance/prayers of many on this forum, through the times when CH had me in the darkest despair to the sharing of my present state of peace with my brain.

Hope it continues....scared to death of when it will return (I believe they always return)...concerned about the health side effects of maintaining such a high level of testosterone ( I am way above the high end of the chart for a male my age now)..but very grateful for this last year.

Paul

I hope it continues, too. And I'd LOVE to see studies in the future that might help to validate this. There's nothing I love more than research that helps us all.

From the bottom of my heart, I really am happy that you've found this level of relief.

[quote author=1F2F382A5D0 link=1256149123/7#7 date=1256170094]And I'd LOVE to see studies in the future that might help to validate this. There's nothing I love more than research that helps us all.quote]

Brew,
Here are the published links that persuaded my Doc to give it a try on me.  I do not know of any CH hormone studies going on at this time.  Wish a research doc would try and verify past findings.

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Paul