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50 weeks and better (Read 2630 times)
shelticon2
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Greensboro NC
Gender: male
50 weeks and better
Oct 2nd, 2008 at 1:32am
 
Hi all,

    I would like to share my story with you and fill you in on what I have discovered. I cannot tell you that I have found a cure, however I can say that I have found the underlying cause of MY CHs and maybe my headaches are the same as yours and therefore this could help you. I wish that post helps everyone reading it.
    I would like to start by saying that I AM NOT A DOCTOR. However due to the rarity of this condition and the lack of knowledge of medical professionals about this condition, I have had to become my own personal physician. I would also like to point out that, I believe that although the symptoms of different people may be the same or similar, the underlying cause may be different.
    I am a 44 year old male diagnosed with CH about 1 year ago. In that time I have had NO periods longer than one day without pain. I believe that that would classify me as chronic CH.
    By the end of my third month, I discovered why these are called "suicide headaches" This, I'm ashamed to say, was a frequent thought of mine back in those days. God, I'm glad that I've past that. At 6 months I have seen 5 Docs ( my family Doc and 4 specialists) I was taking 15 pills a day ( Verapimil, Topamax,Depacote,melatonin and at least 2 others that I cannot recall the names of.) Still the only Pain Free Day (PDF) upto this point was 1 day following an occipital nerve block one of my headache specialist Docs gave me.
    It was at that point I got off of the meds and stopped going to my Docs. I figured that I couldn't do any worse than they. So I researched things and came to a conclusion ( which was later confirmed by blood tests).
     What I found MY problem was, is a low level of Testosterone. I had none of the other symptoms ( sexual) one might equate with low T. Since having this confirmed by my Doc, I have been on T. Replacement Therapy(TRT). In the last 6 months ( on TRT) I have had countless PFDs. I still have pain most days, but it is extreemly mild compared to what it was. I have my life back.... I can play with my children again.....
    A few final thoughts.... Before recieving prescription T. I used a product called "Amidren" It is sold in the men's health dept of many nutrition stores. It worked pretty well but not as good as prescription T. ...Like I said earlier, this is MY story. I, being male, have no idea if any of this is applicable to females. I also believe that in my case the low T. is a symptom of another condition which I accept and will have to live with.

Hang tough..... Don't give in to bad thoughts.... things will get better.
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Cage the Beast
 
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CH-HELL
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Re: 50 weeks and better
Reply #1 - Oct 2nd, 2008 at 7:55am
 
Hi,  Thanks for the story.  I have also found a connection between testosterone and CH.  My story is a little different,  about 12years ago I was into body building and I tried anaboclic steriods(Deca) this trigger one of my worst cycles ever it was short but I got hit 2-3 times a day with kip 9's and 10's.  The cycle lasted two weeks witch is about how long an injection of Deca would stay in your system.  Havn't tried it again and I have never had my T. level tested.  If you were taking an herbal T. increaser before you had your levels checked that may have been the reason your levels were low,  they are known to spike the T. levels and then it drops and blocks the natural production.     Phil
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Bob Johnson
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Posts: 5965
Kennett Square, PA (USA)
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Re: 50 weeks and better
Reply #2 - Oct 2nd, 2008 at 9:10am
 
We had a brief discussion of this issue several months ago. (You can locate that run of messages on the old site.)
===========

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 
=====================

Your experience of multiple docs has been a significant issue for a good number of us and reflects just how small a minority we are.

The two most common ways of responding has been finding a new doc, and hoping, and/or learning about how to treat ourselves and then "teaching" the doc how to treat us. Several of us have been blessed with a doc whose ego will tolerate accepting medical literature which, in effect, teaches them.

Thanks for sharing your experience.
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Bob Johnson
 
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ClusterChuck
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Posts: 5394
Greenville, North Carolina
Gender: male
Re: 50 weeks and better
Reply #3 - Oct 2nd, 2008 at 6:56pm
 
There have been several clusterheads that have reported good results from testosterone supplements.  I keep bringing it up to my neuro, and for some reason, she is against even looking into it (which is surprising, as she is usually very open to looking into new avenues)

Let's hope that it continues to help you out.

Chuck
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