Author |
Topic: New therapy for chronic/unresponsive CH?? (Read 2204 times) |
|
Bob_Johnson
New Board Hall of Famer
Gender: 
Posts: 1796
|
 |
New therapy for chronic/unresponsive CH??
« on: Jun 8th, 2006, 11:06am » |
 Quote  Modify
|
Folks who have not found an effective treatment for their CH might wish to print this article and give to the doc.
--------------------------------
Headache. 2006 Jun;46(6):925-33. Related Articles, Links
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
|
|
 IP Logged |
Bob Johnson
|
|
|
unsolved1
Guest
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #1 on: Jun 8th, 2006, 1:53pm » |
Quote Modify
 Remove
|
After a series of devestating attacks this morning, I'm going to point my neuro at this and have some tests done. I'll see him today.
UNsolved
|
|
IP Logged |
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 4556
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #2 on: Jun 8th, 2006, 5:23pm » |
Quote Modify
|
I'll be taking a copy to my doc as well.
|
|
IP Logged |
|
|
|
floridian
Guest
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #3 on: Jun 8th, 2006, 6:28pm » |
Quote Modify
Remove
|
Not a new therapy, but a new study confirming older work. But definitely worth talking about - both testosterone and testosterone blocking drugs have helped some.
Neurol Neurochir Pol. 1985 Nov-Dec;19(6):486-9.
[Treatment of Horton's headache with testosterone]
Klimek A.
|
|
IP Logged |
|
|
|
Katherinecm
New Board Old Timer
  
Gender: 
Posts: 266
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #4 on: Jun 8th, 2006, 6:32pm » |
Quote Modify
|
Please keep us updated as to how this works for you all... I'm a little scared of messing with hormones- various formulations of birth control pills seem to cause either depression or weight gain in me. So I think I'll wait it out on this one, but I am VERY interested in your results!
Good luck!
Katy
|
|
IP Logged |
http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
|
|
|
godsjoy777
New Board Veteran
HIS name is above clusters
Gender:
Posts: 122
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #5 on: Jun 9th, 2006, 10:16am » |
Quote Modify
|
Very nteresting....Though I've been a CHsufferer for about 15 years.....The last couple of years as I have been going through menopause, I've noticed the hot flashes being a trigger..Of course that could just be the rise in temp or.......something more....
I've been off most everythingfor awhile....I still take meletonin and O2 for abortive....Just don't want all that other stuff in my system anymore....especially when it only increases my cycles...with little to no relief...
Blessings and keep investigating,
Karen
|
|
IP Logged |
|
|
|
floridian
Guest
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #6 on: Jun 9th, 2006, 12:26pm » |
Quote Modify
Remove
|
on Jun 9th, 2006, 10:16am, godsjoy777 wrote:Very nteresting....Though I've been a CHsufferer for about 15 years.....The last couple of years as I have been going through menopause, I've noticed the hot flashes being a trigger..Of course that could just be the rise in temp or.......something more....
I've been off most everythingfor awhile....I still take meletonin and O2 for abortive....Just don't want all that other stuff in my system anymore....especially when it only increases my cycles...with little to no relief...
Blessings and keep investigating,
Karen
|
|
CGRP is a main chemical that spikes during a hot flash, and it also spikes with a cluster headache. Several researchers have predicted that CGRP inhibitors will be the next generation of meds for clusters/migraines. And there is an herbal therapy that has been shown to block CGRP:
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Keishi-bukur yo-gan
|
|
IP Logged |
|
|
|
tanner
CH.com Alumnus
New Board Hall of Famer
Adopt a POW/MIA I have
Gender:
Posts: 2449
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #7 on: Jun 9th, 2006, 5:27pm » |
Quote Modify
|
I am definitely going to take this to my doc on Monday, but I don't get it. Are we talking about increasing testosterone levels or decreasing them?
btw; getting creamed right now at an unusual time for me and some other unusual characteristics
am on new drug (for me) Lyrica still taking the verap, forgot to take this am's dose and slam hit at 4 with a short but severe and can feel the next one coming.....tim
|
|
IP Logged |
I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
|
|
|
mynm156
New Board Hall of Famer
hope life isn't a big joke, because I don't get it
Gender:
Posts: 1708
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #8 on: Jun 10th, 2006, 2:11pm » |
Quote Modify
|
interesting! I may have to check it out as well THANKS!!!
|
|
IP Logged |
"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
|
|
|
Pinkfloyd
New Board Hall of Famer
comfortably numb
Gender:
Posts: 1406
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #9 on: Jun 11th, 2006, 2:14am » |
Quote Modify
|
Thanks Bob.
I'm wondering if its common among "treatment resistant" patients to have these abnormal hormone levels or if they weeded out 90% of the "treatment resistant" sufferers to find the 9 that had the abnormal levels.
Did the study you cited Flo, make any mention of this? Are there numbers on the commonality of the two; treatment resistance and abnormal hormone levels?
Abnormal levels and "all" sufferers?
Bobw
|
|
IP Logged |
"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #10 on: Jun 11th, 2006, 11:04am » |
Quote Modify
|
BobW: This is the entire abstract; would have to get the original article to see what's there.
Nice thing about this potential treatment is that a simple blood test will give your current level.
|
|
IP Logged |
Bob Johnson
|
|
|
rhino
New Board Newbie
I love YaBB 1G - SP1!
Posts: 50
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #11 on: Jun 11th, 2006, 4:58pm » |
Quote Modify
|
I would love to investigate this Testosterone treatment but first I have got to find myself a new Doc. the guy I am with is worthless.
Can anybody recomend a good Neuro or headache clinic in Houston Texas?
|
|
IP Logged |
|
|
|
mynm156
New Board Hall of Famer
hope life isn't a big joke, because I don't get it
Gender:
Posts: 1708
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #12 on: Jun 19th, 2006, 2:32am » |
Quote Modify
|
I went to my doc and had these levels tested and they were ok. So no HGH for me. hahahahaha Its just a blood test and took two days to get results.
PFDA
MYNM156
|
|
IP Logged |
"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #13 on: Jun 19th, 2006, 7:26am » |
Quote Modify
|
Rhino:
1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
|
|
IP Logged |
Bob Johnson
|
|
|
unsolved1
Guest
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #14 on: Jun 20th, 2006, 8:58pm » |
Quote Modify
Remove
|
I had the blood test done while in the hospital. The levels came back in the 'low normal' range. It seems that there were more than 1 test for the levels. Are there several different levels to consider when measuring testosterone levels? I was also told that there are several differnet ways for which to administor testostrone ... how are they doing it and at what doses? My neuros are going to research it and get back to me for possibly an outpatient procedure.
I'll let ya all know what they do and if it helps.
UNsolved
|
|
IP Logged |
|
|
|
kcopelin
CH.com Alumnus
New Board Hall of Famer
good grief
Gender:
Posts: 536
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #15 on: Jun 21st, 2006, 11:39am » |
Quote Modify
|
Threads like this one are the reason I think this site ROCKS! Am taking info to my doc-I also am menopausal with hot flashes and there does seem to be a coorelation.
PFDAN y'all,
Kathy
|
|
IP Logged |
Words count, chose carefully.
|
|
|
cberry5102
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 2
|
|
Re: New therapy for chronic/unresponsive CH??
« Reply #16 on: Jun 26th, 2006, 3:40pm » |
Quote Modify
|
my husband has been in the hospital since friday..they are doing this test on him today
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss