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Paul

My next door neighbour has CH. We always compare war stories.

He and his wife have been provided with the hormone info and expects his Dr. will agree to the testing.

He has done predn. taper and uses Verapamil and Maxalt with some limited success. He has been with different Dr.s and has yet to get an O2 script.

Please keep the reports coming, Paul.  Great News!!

Here's hoping you've found your magic bullet, Paul.


Carol

MY WEEK #5 HRT REPORT

CH free all week....yessssss!

Some very light shadows (enough to tell me that i am still in cycle, so I did not have do the "cologne test" to see if remission has begun...it has not...yet)

Reduced from 40mg to 30 mg amitrip. for sleep.

Off of Topamax completely...(CAUTION - tapering off Topamax any faster than Dr. recommendations results in a strange and unpleasant withdrawal experience)

Enjoying my first winter life in 24 years.

Paul

That's awesome!!!!!! I'm so happy for you!!!

...now, has there been any consensus on how quickly your testosterone levels come back to normal when the cycle ends, or if there's any kind of "effect" on the body?  Or if it's gradual?

where has this post been hiding???  very very interesting. I have a neuro appt next week and will surely ask about this

YESSSSSS......

Ok, how would this work for an episodic with a typical 40 day cycle every 18 months?  Would they just go on the Testosterone for the cycle duration, or would it be year round?  Any input?

Melissa wrote on Jan 25^th, 2009 at 11:36am:



I do not know, however i would assume that if you did not have insurance coverage, HRT could be rather expensive to carry on year round for episodes spaced so far apart, and probably not neccesary.

If you predict with any certainty when you expected a revisit of the beast, you could possibly start therapy a couple of weeks prior and see if the cycle even materializes....otherwise if you wait until he returns, (and you are one of the ones where Hormone therapy works), you could restart immediately at the onset of a cycle and possibly have good results within a couple of weeks, rather than suffer for 40 days.

Another option would be to get hormone injections at the onset of a cycle....i have come to understand that it works immediately since a high dose hits the bloodstream right away  versus the patch or gel which take some days to build up in bloodstream to any significant level for relief.  

The problem with injections is the inconvenience and it tends to spike the hormone high quickly and then drops off until the next injection happens......it may be a good way to "fast track" into the bloodstream and then start on the gel or patch for maintenance of hormone levels during the cycle ( this is how it was explained to me by my doctor.

My Doctor returns this coming week and i am scheduled to review things with him...if i learn anything of value, I will be sure to post in this thread.

Paul

I rarely visit this forum anymore, and just ran across this thread.  After reading the 4 pages, I decided to share my experience.

Last August at the suggestion of my neuro, I started taking clomiphene citrate - 50mg daily.  It's fairly expensive and for the most part only prescribed to women to help them ovulate.  I found that I can get the generic for $49 a month.  It boosts the T-levels.  

I am diagnosed primary chronic CH and am considered refractory.  I have tried all of the traditional meds, as well as the "alternatives."  I have gotten some relief with psilocybin, LSD and LSA.  The only traditional med that has helped at all is verapamil.  I have been taking 480mg of verap daily for years now.  Oxygen also works for me most of the time.

Since starting on the clomiphene citrate, my frequency and intensity has dropped dramatically.  I have gone from an average of 4-5 hits daily, averaging k5-6, to about 3-4 hits weekly with almost all being a K-1 and the worst being a K-2!  I have also had a couple of totally pain free periods lasting a week or more.

This is where my neuro got the idea from:

From the February, 2008 issue of "Headache" magazine, Dr. Rozen writes:

Michigan Head Pain and Neurological Institute, Ann Arbor, MI 48104, USA.

"A treatment refractory chronic cluster headache patient is presented who became cluster-free on clomiphene citrate. The author has previously reported a SUNCT patient responding to clomiphene citrate. Hypothalamic hormonal modulation therapy with clomiphene citrate may become a new preventive choice for trigeminal autonomic cephalalgias. The possible mechanism of action of clomiphene citrate for cluster headache prevention will be discussed."  

I have the full text of this article, but am afraid it is a bit long to post here.  I would be glad to send it as an attachment to an email, if anyone is interested.

As someone said, what works for one person may not work for another.  And BTW, I have another friend who was also chronic that has tried clomiphene citrate with the same great results.

Wishing everyone out there fighting this disease -- all the best!

alley

Maybe this will help explain (if it all makes it on the post):

DISCUSSION
Prior to the advent of functional neuroimaging,
cluster headache was already deemed a hypothalamic-
2
influenced syndrome based on the multitude of hypothalamic
hormonal changes noted in cluster headache
sufferers.Melatonin, cortisol, prolactin, LH, and testosterone
levels can all be altered during a cluster
headache cycle and some of the hormone levels
remain abnormal in the interictal period.7 The idea of
treating these hormonal alterations to see if they
would change the course of cluster headache is not
new with clomiphene citrate. Low testosterone levels
documented in cluster headache sufferers led Nicolodi
et al8 to give testosterone supplementation to chronic
cluster headache patients in the early 1990s. Most of
the treated patients showed no change in headache
intensity or attack frequency, but all subjects had a
dramatic increase in sexual activity. A more recent
investigation, however, did demonstrate a positive
influence of testosterone administration for treatment
resistant cluster headache with some treated patients
having a total remission of attacks.9 The conflicting
treatment response to testosterone may reflect that
testosterone levels are not always low in cluster headache
patients and in some studies testosterone levels
have been found to be normal.7 Leuprolide, a gonadotropin
releasing hormone (RH) analog, was looked at
in a single-dose study and led to a decrease in cluster
headache pain intensity and attack frequency in 26 of
30 chronic cluster headache patients studied.10Twelve
patients had complete resolution of their headaches
17 days after leuprolide administration. Prior to treatment,
all patients had normal testosterone and LH
levels,with an initial rise in serumLHand testosterone
levels (Day 1-5) after leuprolide injection, followed by
a marked reduction in both. The testosterone levels
remained low for 30 days while the duration of headache
improvement lasted 3.25 months. This study in
which testosterone levels were actually persistently
lowered rather than raised gives more credence to the
thought that altering testosterone levels alone may not
be the prime effect of hormonal manipulation therapy
for cluster headache.This investigation was the first to
suggest that giving a medication that can directly
alter the hypothalamic-pituitary-gonadal axis can suppress
cluster headache. Based on these promising
results, it is somewhat surprising that leuprolide has
not been looked at further for cluster headache
prevention.
Clomiphene citrate is a synthetic non-steroidal,
ovulatory stimulant that can raise testosterone levels
in males by competing with endogenous estrogen at
hypothalamic estrogen receptors.11 In essence, clomiphene
citrate blocks the endogenous estrogen feedback
inhibition of LH-RH, thus leading to a rise in
LH and FSH levels with subsequent leydig cell stimulation
and testosterone production. The manner by
which clomiphene citrate prevents cluster headache
can only be speculated. The ability for clomiphene
citrate to elevate testosterone levels would appear to
be its primary mechanism of action in cluster headache
modulation, but as stated previously, testosterone
supplementation alone does not always improve
cluster headache and in the case of leuprolide, cluster
headache frequency decreased after a lowering of testosterone
levels.10 In addition, the case patient had no
change in his headaches after direct testosterone
supplementation. Could an elevation of LH levels by
clomiphene citrate in some manner suppress cluster
headache? There are conflicting reports on LH levels
in cluster headache patients with some studies documenting
normal levels while in others LH levels are
reduced.7 It is unlikely that raising LH levels alone
plays a role in cluster headache prevention as LH
levels were markedly reduced in the study subjects
who responded to leuprolide. In addition to altering
testosterone and LH levels, clomiphene citrate has
been shown to reduce prostaglandin E2 levels in a rat
model of ovulation and also in human endometrial
cells.12,13 Prostaglandins are known to have vasoactive
properties and serum prostaglandin E2 levels are
elevated during cluster headache cycles.14 Recently,
prostaglandin E2 was shown to enhance the release of
calcitonin gene-related peptide (CGRP) in a capsaicin
evoked CGRP release model involving the rat
trigeminal nucleus caudalis.15 CGRP is an integral
component to cluster headache pathogenesis. There
are elevated CGRP levels in jugular venous blood
during cluster headache attacks.16 Clomiphene citrate’s
ability to block prostaglandin E2 and thus theoretically
block CGRP release may help explain its
preventive effect in cluster headache. However, there
are no studies to date looking at the direct effect of
clomiphene citrate on CGRP levels in humans or
animals.