I don't get it.  Isn't it worth a try to just have a simple testosterone level blood test and prove once and for all that it has any value to you or not?

We look and search for something concrete that might help, but no one(except one or two of us) pays any attention to this information.

Why?

Here's a quote transferred from another post of mine from Laurie:

Donna, this is gaining recognition, and you're right - it's a simple blood test.

The "original" study I think you're referring to is this one:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There are others:  
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And this:

The Autonomic Nervous System, by By Otto Appenzeller, P. J. Vinken, G. W. Bruyn:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

"The prevalence of cluster headache in males, and the fact that it is extremely rare in the pre-adolescent period, indicates that sex hormones might also be involved in the pathogenetic mechanism.  Testosterone levels have been reported to be normal or low during the cluster headache period (Leone and Bussoni 1993).  Total, free and carrier protein-bound testosterone levels were significantly diminished only in chronic cluster headache patients whose basal and peak FSH levels were significantly increased (Murialdo et al. 1989).  In addtion, a significant reduction of the 24-h integrated mean testosterone level (mesor) and in acrophase delay were found in cluster headache patients.  It was suggested that the stress of the attack caused elevated cortisol levels tand that this, in turn, would reduce testosterone levels (Facchinetti et al. 1986)."


There is an intricate connection between all the chemicals that are being identified as having a role in cluster headaches, especially as regards serotonin, melatonin and testosterone.  Makes sense given the role of the hypothalamus in controlling brain functions related to all of these things.

A very interesting read:  "Melatonin Keeps the Timing Right," by Abraham Kryger, MD, DMD.  It discusses the relationship between melatonin, serotonin, testosterone and other issues of the endocrine system: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And here's another by Bob Johnson

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  

Both myself and my Dr. are paying close attention to this as i write, and expect lab results from a complete hormone blood workup later this week or early next.  

I am one that will not leave any stone unturned.

I am really getting tired and beaten down dealing with CH with no effective abortives in my toolbox...only using ineffective preventers for the past eight years or so...

Paul

Paul, I've been anxiously watching for a post from you....glad you and your dad are following up on it.

Wouldn't it be wonderful if hormone replacement therapy helps the 7 out of 10 people who prove to have an imbalance, as the above research claims?

Perhaps, as the literature cited, this has more to do with chronics than episodics.  

I'm an episodic.  I was tested some time ago (for an unrelated reason) while out of cycle, and it turned out that I was on the high side.  Can't say what it might show when I'm in cycle, however.

Well--high or low, it's still an imbalance.  Perhaps the imbalance itself has something to do with it.  I couldn't say.   :-/

Best,

George

I just copied the main part of the thread and faxed it to my dr and requested a blood test.

Have not turned this particular stone over before.  Might as well give it a shot.

Thanks

if it is a testosterone imbalance, why do some benefit from mushrooms? it has to be a chemical imbalance, but what is it? i havent had a hit in 4 days and it has felt like weeks. i was getting hit, remission i thought, more hits, then i found mushrooms and no more CH for now. not a shadow, nothing. i havent tried the "beer test" yet because it is too soon to be HA free for me to try it. what chemical is missing the mushrooms will fix? kels nor i can fathom what it is but we are happy it worked. im shocked myself. i havent posted in a few days because ive been out of the house. no more prison for me.

*sorry for causing drama the other day, im not right in my head when im in a cycle. i feel and act a little bit off the rocker. its the pain that does it to me.

ChefChris wrote on Dec 2^nd, 2008 at 3:00pm:

if it is a testosterone imbalance, why do some benefit from mushrooms? it has to be a chemical imbalance, but what is it? i havent had a hit in 4 days and it has felt like weeks. i was getting hit, remission i thought, more hits, then i found mushrooms and no more CH for now. not a shadow, nothing. i havent tried the "beer test" yet because it is too soon to be HA free for me to try it.  kels nor i can fathom what it is but we are happy it worked. im shocked myself. i havent posted in a few days because ive been out of the house. no more prison for me. *sorry for causing drama the other day, im not right in my head when im in a cycle. i feel and act a little bit off the rocker. its the pain that does it to me.

This is the first sensible post i have seen from you Chris, since i have joined the family. I think you have raised some very good points and i thank you for that.

Definately some sort of chemical or hormonal (what really is the difference...i certainly do not know...i am in road construction!) is at least partly responsible for CH.

Many report relief with mushrooms, and as you ask "what chemical is missing the mushrooms will fix?" It would be nice to see some research done on this.

As far as the "beer test" that so many talk about on this forum, there is no way in hell that in a remission, I would ever in my life tempt fate with a sip of any alcohol for the fear of beginning another cycle! You guys are nuts! or your abortives work too well.

....and as fas as the other day goes ...*sorry for causing drama the other day, im not right in my head when im in a cycle. i feel and act a little bit off the rocker. its the pain that does it to me. I will not comment since i have nothing positive to contribute!

cheers
Paul

If I may be so bold as to quote myself:


shelticon2 wrote on Oct 2^nd, 2008 at 1:32am:

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.....

Since posting this I have altered my diet to a T. friendly diet and have been able to take myself off of the TRT. I have lived the last month or so PAIN FREE ( almost.....I still get minor shadows and sometimes lite hits if I deviate from my diet plan). Drug free... Pain free...Hey, I can  live with that.

It's worth a try... Take the test, It won't hurt a bit..

PFD's to All

Jim

I have an appointment with my neuro on the 12th, and I will discuss this with him. I am working up a list of pertinent question to be prepared. I am having a lot of problems with my C6-7 partially ruptured disk and suspect it to be related to my extremely active CH attacks lately. I will have him do a blood test to check my T level also.

I can be pretty pig headed from time to time but this is a what can it hurt scenario worth checking. 8-)

ChefChris wrote on Dec 2^nd, 2008 at 3:00pm:

if it is a testosterone imbalance, why do some benefit from mushrooms? it has to be a chemical imbalance, but what is it? i havent had a hit in 4 days and it has felt like weeks. i was getting hit, remission i thought, more hits, then i found mushrooms and no more CH for now. not a shadow, nothing. i havent tried the "beer test" yet because it is too soon to be HA free for me to try it. what chemical is missing the mushrooms will fix? kels nor i can fathom what it is but we are happy it worked. im shocked myself. i havent posted in a few days because ive been out of the house. no more prison for me. *sorry for causing drama the other day, im not right in my head when im in a cycle. i feel and act a little bit off the rocker. its the pain that does it to me.

chris have checked out the clusterbusters website? if i wasn't on this half computer i would cut and paste a link for you. there's alot of usefull information on that site. if you spend some time there you may find some answers to some of your questions ;)

yeah, i got a link to that site my 1st day.  i dont remember the site answering my questions. maybe i need to read again.

ChefChris wrote on Dec 2^nd, 2008 at 4:53pm:

yeah, i got a link to that site my 1st day.  i dont remember the site answering my questions. maybe i need to read again.

be sure to follow all thinks.

Au Contraire, madame, it does hurt- my wallet!  ;D   I'm very interested in the hormone thing, but I found out today it will cost me upwards of $200, and I'm broke as a spoke.  Maybe when insurance kicks in next year.  :-/

And to Chris420- yeah, the site is not too well organized, so you have to really dig around, but there are a lot of links to other sites that have more technical medical info.

I have an appointment this Friday to have the lab work done. Thankfully the insurance co-pay is only $10.00.

Update;  Dr. office called today to set up appointment for this friday to review results of full hormone blood workup and next action plan.

No charge $ for any of these tests or any doctors appointments in Canada (just high taxes   haha)

Will report more Friday.

Dear DonnaH:

I had the blood drawn today for Testosterone level and liver function (I'm on a bunch of meds for various reasons and they wanted to check my liver out).  I should know Monday.

I'll let you know if anything interesting comes of it....

Ray

Thank you for taking this all important step, guys.  I wish a few gals were interested in the testing also.  Maybe some will be.

I'm proud of you for stepping forward for the cause.  If nothing comes of it, at least we tried.  If it proves to be valuable.........WOW.  Wouldn't that be wonderful?

Donna  8-)

Donna-

Thanks for continuing to post this information.  I am very interested in the hormone connection.   I plan to get tested.

My first neuro ordered an estrogen test which I never followed through with because I ended up firing him and going to a new neurologist, got on the right meds etc.  I was seeing him every two weeks while in cycle.   I took so much time off of work for the appts etc that once I went out of cycle,  I tried not to look back much.  I got my stockpile,  got seeds just in case.

The smart thing for me to do would be to call my neuro now, while I am out of cycle and ask him to order this for me.  He probably would , he's very open.   Now its just a matter of following through..... and remembering while I am work to call and talk with him.    My memory still kind of sucks from the verapamil   or from being a mom ? ;) Thanks again for the info and I'll work on following thru

kelly

Quote:

The smart thing for me to do would be to call my neuro now, while I am out of cycle and ask him to order this for me.  He probably would , he's very open.

Knowing him like I do, I'd say he'd do it no problem. Heck, I've had mine checked before as previously stated but I may have it done again...never know. Worst that can happen is he says "it's normal".

B

well i am low testosterone and use patches to raise the level and i still get hit as usual. so for me anyway not much help.

Back from the Dr. and this is getting more interesting.
Both testosterone tests show my levels to be low.
So, now the Dr. is going to prescribe hormone replacement, but not until i take a PSA test which he had me do today while i was at the office (this is one test that for some strange reason is not covered by our universal health system so $30). When the results come back showing that i do not have prostrate cancer (well lets hope not) then he is able to start testosterone treatment...in this case he says not using the patch, since much better results and body absorption and control using gel that is just rubbed onto the arms!
He then plans on monitoring the testosterone levels as well as the headaches until remission arrives whether sooner or later.....then taper off preventers and continue with hormone monitorring ( there may be a hormone level spike after coming off meds which along with the headaches themselves may partially be responsible for supressing the hormone levels) and then achieve a safe remission hormone level and then see when and if ( doesn't that sound wonderful) and at what intensity and frequency the CH return at before meds are reintroduced...prehaps O2 may again work if hormones are stable...who knows!
Another chapter in my personal CH research begins. Thankyou to this forum and those on here that have kept this idea alive so that i may have a chance to explore this avenue, especially Donna and Dennis.
Paul

NOW I have goosebumps.

This will be a most interesting journey.  I can only hope and pray that it turns out to be fruitful.  Thank you, Paul, for sharing this with us.

I hope you are keeping a journal on every detail.  You may want to compare with another's journey, or write a paper someday.

I'm really so happy to finally see interest in this possibility..........YESSS!!!  [smiley=sayyes.gif]

My son John called me from Iowa today (semi-driver) to tell me he got a cluster headache hit last night.  He's another one whose doing the T testing very soon.  As soon as he feels the "presense" making itself known, he starts looking for a place to pull off the road.  This is kind of late for his fall cycle (he thought he skipped it)....or maybe it's his spring one this time, just early.

Atta Girl Kelly!!

In my case, it was also testosterone that I believe to be the culpret. I had too much for a female.......so we can't let that door unopened and just have the estrogen checked. (I don't know if docs today check for just one without checking all possibilities).

I'm anxious, as I'm sure we all in this thread are, to hear others' results.

[quote author=5B7071717E57407E787E76711F0 link=1228226896/21#21 date=1228519144][i]

My son John called me from Iowa today (semi-driver) to tell me he got a cluster headache hit last night.  He's another one whose doing the T testing very soon.  As soon as he feels the "presense" making itself known, he starts looking for a place to pull off the road.  quote]

That sucks!
I have spent many a time parked on a gravel sideroad in agony...but you do what ya gotta do to keep a job in these times. This month's job loss stats were released today for both Canada and the USA are the worst i have ever seen. :o :'(

paul

mezza wrote on Dec 4^th, 2008 at 7:19pm:

Donna- Thanks for continuing to post this information.  I am very interested in the hormone connection.   I plan to get tested. My first neuro ordered an estrogen test which I never followed through with because I ended up firing him and going to a new neurologist, got on the right meds etc.  I was seeing him every two weeks while in cycle.   I took so much time off of work for the appts etc that once I went out of cycle,  I tried not to look back much.  I got my stockpile,  got seeds just in case. The smart thing for me to do would be to call my neuro now, while I am out of cycle and ask him to order this for me.  He probably would , he's very open.   Now its just a matter of following through..... and remembering while I am work to call and talk with him.    My memory still kind of sucks from the verapamil   or from being a mom ? ;) Thanks again for the info and I'll work on following thru kelly

Kelly, I have to find the reference(s), but I'm pretty sure I'm remembering correctly: if you're out of cycle, you're likely to have normal hormone levels.  It's when you're in cycle that they're out of whack.  I'll see if I can find that (though if insurance covers it probably a good idea to get tested anyway)....

Laurie

On a lighter note...

I told my wife, Shade, AKA HerbLady, that I was going to be tested for low testosterone.  She informed me that she can barely keep up with me NOW, and I may wind up sleeping in another room if I get supplemented on my testosterone....


;D

Ray

Ray wrote on Dec 5^th, 2008 at 7:11pm:

On a lighter note... I told my wife, Shade, AKA HerbLady, that I was going to be tested for low testosterone.  She informed me that she can barely keep up with me NOW, and I may wind up sleeping in another room if I get supplemented on my testosterone.... ;D Ray

I hear ya Ray....my wife had a million questions when I came home from the Dr. and informed her that i will be getting some testosterone therapy...she seemed genuinely worried...hahahah!

Found one of them:

Low plasma testosterone levels in cluster headache
Alfredo Romiti , Paolo Martelletti , Maria Francesca Gallo and Mario Giacovazzo
 Headache Service, Department of Internal Medicine, H Clinica Medica, Rome University, Viale del Policlinico, 00161 Rome, Italy


*Data presented in part of the Fifth National Congress of the Italian Headache Society, L'Aquila, July 1981.

"Serum levels of various hormones have been estimated in cluster headache and non-cluster headache controls. Cluster headache patients were studied prior to, during, and after attack. During the cluster phase, plasma testosterone levels were low, whereas levels were within the reference limits in the remission period of episodic cluster headache. LH levels were within reference limits."

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Laurie

Garys_Girl wrote on Dec 5^th, 2008 at 7:16pm:

Found one of them: Low plasma testosterone levels in cluster headache Alfredo Romiti , Paolo Martelletti , Maria Francesca Gallo and Mario Giacovazzo  Headache Service, Department of Internal Medicine, H Clinica Medica, Rome University, Viale del Policlinico, 00161 Rome, Italy *Data presented in part of the Fifth National Congress of the Italian Headache Society, L'Aquila, July 1981. "Serum levels of various hormones have been estimated in cluster headache and non-cluster headache controls. Cluster headache patients were studied prior to, during, and after attack. During the cluster phase, plasma testosterone levels were low, whereas levels were within the reference limits in the remission period of episodic cluster headache. LH levels were within reference limits." START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Laurie

This is exactly what my Dr. wants to track over the next couple of years worth of cycles, and see how hormone therapy affects our existing drug therapy and/ or go back and revisit previously tried therapies with enhanced hormone levels during cycles.

Paul

Well, I can't afford it, but my doc is interested, and I sure am too- because right about the time it started creeping in this summer, I noticed that I was growing a friggin' beard! Now, all the women in my family have one or two beard-type hairs on their chin (as opposed to just some dark "vellus" or body hair)  but I noticed these buggers were coming in in spades- I have about 6 or 7 on each side now.  AND I'm breaking out.  Bad.  I'm 32, and back in college- and I look worse than the freshmen!!! :D

Of course, the worst part was when I found a GRAY BEARD HAIR.  I just went back to bed for the day.  ;D

What about progesterone?  Those levels elevate when a woman is pregnant, and most (not all) women's attacks cease when their pregnant.

From Wiki (take it for what it's worth)


Quote:

Nervous system Progesterone, like pregnenolone and dehydroepiandrosterone, belongs to the group of neurosteroids that are found in high concentrations in certain areas in the brain and are synthesized there. Neurosteroids affect synaptic functioning, are neuroprotective, and affect myelination.[13] They are investigated for their potential to improve memory and cognitive ability. Progesterone as neuroprotectant affects regulation of apoptotic genes. Its effect as a neurosteroid works predominantly through the GSK-3 beta pathway, as an inhibitor. (Other GSK-3 beta inhibitors include bipolar mood stabilizers, lithium and valproic acid.) Other systems It raises epidermal growth factor-1 levels, a factor often used to induce proliferation, and used to sustain cultures, of stem cells. It increases core temperature (thermogenic function) during ovulation.[14] It reduces spasm and relaxes smooth muscle. Bronchi are widened and mucus regulated. (Progesterone receptors are widely present in submucosal tissue.) It acts as an antiinflammatory agent and regulates the immune response. It reduces gall-bladder activity.[15] It normalizes blood clotting and vascular tone, zinc and copper levels, cell oxygen levels, and use of fat stores for energy. It assists in thyroid function, in bone building by osteoblasts, in bone, teeth, gums, joint, tendon, ligament and skin resilience and in some cases healing by regulating various types of collagen, and in nerve function and healing by regulating myelin. It appears to prevent endometrial cancer (involving the uterine lining) by regulating the effects of estrogen.

I've always been an episodic CHer until last week when I got my first ever cycle. I've been on Topimax for about two years and it kept the episodes away, but with this cycle I'm getting a very low level daily shadow that I can live with. I wanted to get into my doc for a complete hormone check, but she has been out. Hopefully I can get it checked before going out of cycle to add more data for the female sufferers.

PSA test came back good and today the dreaded digital prostrate test checked out OK. The Dr. prescribed the gel testosterone which comes in a pump bottle like hand creme. You pump the # of pumps prescribed and then it is rubbed into the shoulders and bicept area of the arms. This provides a more even hormone balance in your system than the injection method, and is better (in my opinion) than wearing a patch around all the time. The stuff is like a clear glycerine gel that disappears into the skin in seconds.

Now the monitorring of both hormone levels and CH begins.

I'll keep you posted of any earth shattering remissions within hours of my first application haha!

Paul

I don't have my results in front of me right now but if I remember correctly I had low FSH level (1 U/L) and low testosterone (but it was still in "normal values"). I am chronic.

I posted about low testosterone during a cycle on the board 2 years ago and was poo-pooed by a lot of people here.

I read several articles on the finding of low testosterone and did the tests on my now late husband. His testosterone level was low during cycle and returned to normal when out of it.

He received testosterone supplement via injections which returned his level to normal, but did nothing for his headaches. Disappointedly he must have fallen into the 30% for which this would not work.

Testosterone is part of the hypothalamus-pituitary-gonadal axis so it can certainly be affected while the whole system malfunctions during a cycle. However, it is but one of the many things that can and do go wrong during a cycle, therefore fixing it may or may not help one particular person's headaches, but its worth checking and following up.

wrote on Dec 12^th, 2008 at 8:25pm:

I posted about low testosterone during a cycle on the board 2 years ago and was poo-pooed by a lot of people here. I read several articles on the finding of low testosterone and did the tests on my now late husband. His testosterone level was low during cycle and returned to normal when out of it. He received testosterone supplement via injections which returned his level to normal, but did nothing for his headaches. Disappointedly he must have fallen into the 30% for which this would not work. Testosterone is part of the hypothalamus-pituitary-gonadal axis so it can certainly be affected while the whole system malfunctions during a cycle. However, it is but one of the many things that can and do go wrong during a cycle, therefore fixing it may or may not help one particular person's headaches, but its worth checking and following up.

I am sorry to hear that you got "poo pooed", but i am not terribly surprised (considering what i have witnessed on the site from time to time with anything suggested other than the good old standard O2 and traditional drug therapies for the majority). Anything else is considered "quackery"
 
I have been lurking here on and off  for several years and just recently thought I should contribute seeing as I feel i have learned alot and then I noticed a post about hormone and a link to additional info which I took to my Dr. and now we are turning over this stone to see if it bears any piece of my neurological puzzle.

Thank you for your post and i agree with your last paragraph.

My doctor is very progressive and treats the whole person, not just the symptoms; as all the complexities of the body interact and the mystery of which imbalance in my body's interconnected systems causes these headaches, the quest that both my medical team and I are chasing. And yes, we are all wired/plumbed different, so what works for one does not always work for the next.

Paul

[quote author=5B5F424F44574453160 link=1228226896/35#35
My doctor is very progressive and treats the whole person, not just the symptoms; as all the complexities of the body interact and the mystery of which imbalance in my body's interconnected systems causes these headaches, the quest that both my medical team and I are chasing. And yes, we are all wired/plumbed different, so what works for one does not always work for the next.

Paul
[/quote]


Thanks Paul for the kind words. Its much appreciated.

I have been advocating for a multi-disciplinary course of treatment for CH where the whole person is looked at. Everything should be checked and reviewed from diet to sleeping patterns to musculoskeletal to mental health to even stopping smoking. CH affects many many aspects of the person: physically, mentally and emotionally.

The reason these suggestions have not been well received because each single treatment does not and can not stop CH. In combination they can help but then again the result varies from person to person.

I understand when a person is in the grip of this inhuman pain, he/she is desparate for a silver bullet that will stop the beast in its track. By this, we are talking abortive treatment, for which the best are still oxygen and ergotamine such as imitrex. Some psychometric meds and subtances show great promise also but they are less understood.

Multidiscipline regime is more for preventive. It takes time, it takes a lot of effort and the results can not be seen quickly enough for someone in the midst of pain.

Episodic CHers suffer so much during a cycle that as soon as it stops, they tend to prefer not to think about it and they want to go about living their lives to the fullest, doing all the things they cant do in a cycle like drinking and going out. The last thing they feel like doing is starting to modify their lifestyle, diet and fitness. They feel that having CH is restrictive enough, they dont want to have to modify their lives in any other way. I know because my late husband was like this too. When out of cycle, he did not want to even talk about it, preferring to deal with it if and when it does return. Unfortunately, by the time the cycle starts again, if the body is not in tiptop condition, ready for combat, its too late to start then.

Chronic suffers tend to have worked out their own effective ways of coping and managing, and they dont feel the need to try something new as much as someone first starting. From what I have read here, many chronic CHers already modify their diet, their lifestyle etc from their own experience dealing with the morphing beast. It is not viewed as " alternative medicine" but rather " one has to do what one has to do" to cope.

QUOTE "Thanks Paul for the kind words. Its much appreciated.

I have been advocating for a multi-disciplinary course of treatment for CH where the whole person is looked at. Everything should be checked and reviewed from diet to sleeping patterns to musculoskeletal to mental health to even stopping smoking. CH affects many many aspects of the person: physically, mentally and emotionally.

The reason these suggestions have not been well received because each single treatment does not and can not stop CH. In combination they can help but then again the result varies from person to person.

I understand when a person is in the grip of this inhuman pain, he/she is desparate for a silver bullet that will stop the beast in its track. By this, we are talking abortive treatment, for which the best are still oxygen and ergotamine such as imitrex. Some psychometric meds and subtances show great promise also but they are less understood.

Multidiscipline regime is more for preventive. It takes time, it takes a lot of effort and the results can not be seen quickly enough for someone in the midst of pain.

Episodic CHers suffer so much during a cycle that as soon as it stops, they tend to prefer not to think about it and they want to go about living their lives to the fullest, doing all the things they cant do in a cycle like drinking and going out. The last thing they feel like doing is starting to modify their lifestyle, diet and fitness. They feel that having CH is restrictive enough, they dont want to have to modify their lives in any other way. I know because my late husband was like this too. When out of cycle, he did not want to even talk about it, preferring to deal with it if and when it does return. Unfortunately, by the time the cycle starts again, if the body is not in tiptop condition, ready for combat, its too late to start then.

Chronic suffers tend to have worked out their own effective ways of coping and managing, and they dont feel the need to try something new as much as someone first starting. From what I have read here, many chronic CHers already modify their diet, their lifestyle etc from their own experience dealing with the morphing beast. It is not viewed as " alternative medicine" but rather " one has to do what one has to do" to cope.

[/quote]

Yes, I agree.
A little over two years ago, my mother in her seventies battled breast cancer and had to travel daily a long distance to Toronto for 36 consecutive days of extreme radiation ( more than is "normal" for breast cancer). When I saw what she could do to survive, I had my wake up call to get myself in order.
I enrolled in an extreme weight loss program...lost 85 pounds ...and have not gained any back in over two years..adjusted my eating habits...i am more active now....took up race car driving again ( now i fit in race cars again haha) and I am more focussed than ever to tackle every challenge in my business life and my health. My business had been successful before but in the last two years it has headed into uncharted territory and my health has been better than it has been in 20 years...now the CH is my last big hurdle...i have been resistant to almost every drug out there and in recent years a combo of amitryptilene and Topamax has taken the sharp edge off them ( down to Kip 7/8 or less when I am lucky) but in this most recent cycle the Topamax is losing its effectiveness....same old same old....hopefully the hormone balance issue may provide a base whereby traditional therapies may work...who knows.....maybe the CH will just vanish forever...even a remission would be nice....my longest in 30 years was only 9 months.
I feel like my time is coming soon to get a break with the beast.
Always the optimist
Paul

"Always the optimist.

Paul"

As you should be, Paul. I've been in remission now for 28 years, and have been advocating this testing since I arrived here 9 years ago.

As I explained in the Cluster Headache Specific section under "My experience with testosterone imbalance" on page 2 , I am certain that mine were directly related to hormone imbalance.

Nice to see you Annette.  I enjoy your posts.

Lucky break?
Coincidence?

Four days into testosterone treatment....my 24/7 migraine like constant headache has diminished in intensity....and my 8 to 10 daily CH which last for 15 min to 45 min have in the last two days diminished to 5 per day and intensity has diminished from average of Kip 7/8 to 4/5 ....and I always experience a 2 1/2  to 3 hour major CH at least every other day and i have not had one since friday night/early saturday morning...i am still suffering but compared to "normal" this is a lucky break.

Has the change in weather (has gotten dramatically mild) made the difference?

Has the Topamax started to work again? (it has lost its effectiveness for me this year)

Has the hormone therapy changed something fundamental to the CH or the way in which the meds are working?

Am i just getting a lucky mid cycle break?

Ive seen weather changes before so I'm thinkin this hormone stuff might be doing something.....Thought it was worthy of an update...I am pleased regardless of the cause!

More follow ups as time passes.

Wishing you all pain free time with those you love.

Paul

Well, that made my heart skip a beat!  

So happy to hear of your "little break", whatever the reason. I'm still wishing, hoping and praying that something comes of this HRT.

I'll be waiting for the next update.

Donna  8-)

MITYRARE wrote on Dec 12^th, 2008 at 3:19pm:

I'll keep you posted of any earth shattering remissions within hours of my first application

Is that "remissions" or "emissions" Paul?  heheheeheee  ;)

I know it was only 31 hours since i last posted but the weather has turned very cold and nasty again....and my head has continued to improve...mild migraine and 7 CH in the last 24 hours no more than KIP 4   STOP THE PRESSES...THIS IS MAJOR NEWS FOR ME

So now that the fair weather variable is out of the equation...either the Topamax is doing better than it ever has, or I am being miraculously healed( power of positive thinking maybe?) or HRT is working.

hmmmmmn

Time for an experiment (sssssshhhhh do not tell my neuro   i am going to start to taper off Topamax and see if CH symptoms change) As you know I will only drop 25 mg every 5 days and I will track any changes in CH should they occur and taper back up if trouble should erupt.

Stay tuned  - this is turning out to be the most interesting CH change for me in many years...coincidence or not (maybe just the power of positive thinking....but i am going to make the most of it)

Paul

Reading this post, and with the line of non standard things that seem to help some people, some times, there just seems to be a common thread.

Few of these non drug things are mutually exclusive, like dialing in your diet, avoiding heat of cold, exercise or stretching, chem and testosterone levels, seasonal allergy tests for the seasonal types, maybe working on the muscles or bones, checking other glandular functions; to wit the whole body concept.

Remission in my peanut brain, is a state where somehow your body manages to conquer whatever things went out of sync to let an episode begin, after all, a healthy body isn't supposed to hurt like this.

We tend to try something new, then wait and see if it works, and do not much else. Other than perhaps the psychedelics, most everything we talk about is concentrated on stopping headaches, the O2, the drugs and such, usually while not working on the episode.

While we do all of these headache specific things, it just seems to make sense to keep working on the whole body. While no specific thing will cure everyone, I can't see where an overall group of common sense things, whole body if you will, can hurt, especially when done in conjunction with the standard drugs and things that the doctor has prescribed.

Sort of like standing in the shower after chugging a Red Bull, doing a sub lingual Relpax, while sucking on O2 (yesterday). Figure multi approaches sort of increases the odds in our favor.

Wish you all PF for the holidays, wouldn't it be nice?

Chris

It's funny- the whole talk about working on whole body health- because my mother just doesn't get it yet about CH and aside from all the stupid advice she gives me (and no, she hasn't even looked it up in the internet yet!) she was just bitching at me yesterday about all the CAFFEINE I drink, and how THAT is what's probably causing the headaches!!!  ;D ;D ;D

(come to think of it, I think my MOTHER causes CH.  I'll have to run some tests on that.)

"(come to think of it, I think my MOTHER causes CH.  I'll have to run some tests on that.)"

You might be on to something!

MY WEEK #1 HRT REPORT

No noticeable new hair growing where it shouldn't
Muscles have not bulked up noticeably
Have not worn out my wife any more than usual

Have noticeably decreased pain levels of CH
Have noticeably decreased pain level of 24/7 chronic cluster period migraine
have had a 24 hour CH free period
have trouble sleeping even with increased doseage of Amitryptilene (common side effect of HRT)...have not had one minute of sleep in the past 36 hours and do not feel tired at all....really strange super-human feeling considering i am still at 175mg of Topamax per day....will continue to increase Amitrip. to compensate

I will drop another 25 mg of Topamax this week in my experiment to eliminate the Topamax as a factor in my CH improvement of late.

Till next week
Paul

I want to thank you for doing this, Paul.  This is a serious matter and I'm hoping some will take notice and join you. I wish the professionals would do a study announcing large scale percentages.


Donna  8-)

I have figured out the correct amount of amit. to have good sleep the last three nights now and WOW headaches getting fewer and farther between....is this the power of positive thinking or the HRT?

This is going to be the least painful Christmas in memory. I am looking forward to enjoying it so much this year.

Unbelievable!

Why don't more CH people pay attention to this?

Got home from the docs with not the results I was hoping for. I had all hormones checked. The results were smack in the middle range for someone who has finished with the change of life; I was so hoping the results would be off and we would have a reason for the headaches. I did order a light therapy light in hopes that re-regulating the melatonin and seratonin might help.  

This isn't in the same exact class of things but since you're talking about hormones... how many women with clusters have gynocological problems?

Webgopher (what is your first name?)

Since you "have finished with the change of life", are you on hormone replacement therapy?  

Hi, not on any HRT. There is a history of cancers on my mother's side of the family and I don't want to take risks with that bag of worms. I only had one or two hot flashes during the whole change time - I had a couple of basal cell tumors removed and am thinking I might also be predisposed to cancer. Other than having NO sex drive (thankfully the hubby does, too), I'd say I'm holding up pretty well. No CH yet and is almost noon - maybe a pain-free day today.

Back to the base note looking at the correlation of low testosterone with CH:  my testosterone tested in the normal range and I'm still in high cycle.  Then again, normal is a "cuss" word in my family... :D

Ray

MY WEEK #2 HRT REPORT

No noticeable new hair growing where it shouldn't
Muscles have not bulked up noticeably
Have not worn out my wife any more than usual

Have noticeably decreased pain levels of CH
Have noticeably decreased pain level of 24/7 chronic cluster period migraine
Have had 4-24 hour CH free periods since beginning HRT (3 this week)
Increased doseage of Amitryptilene has solved sleep issues associated with testosterone therapy

I have decreased from 200 mg (pre hormone) to 125 mg (current)Topamax and will continue to taper off in an experiment to eliminate Topamax as a variable in headache condition improvement

I am still very much in cycle with almost no underlying Migraine ( normal for me but most days is now un noticed unless i stop and think about it)

CH hits are low grade pain of KIP 3/4 but i have missed 3 days in the last 7

Yesterday (Christmas) was the most painfree Christmas in 25 years although i did have a 5/6 late in the day which hit immediately when i inhaled some new Ferrari cologne (I never use cologne in cycle). The CH lasted 1 h 15min and then felt achy for an hour afterwards.  Proof positive that i am still in cycle.

Today, nothing..... nadda....... fantastic!!!!!!

WHY DON'T WE PAY ATTENTION TO THIS!

Till next week
Paul

Thats great to hear Paul, I will be following this thread. I am making an apointment this comming week for the GP. My nero had no creedance in this train of thaught so I will have to figure out what to say to the GP to get the test done.

I would write more but the friend is showing up so I'm off to the O2 @ 25 LPM.

Roland.

wrote on Dec 26^th, 2008 at 11:17pm:

Thats great to hear Paul, I will be following this thread. I am making an apointment this comming week for the GP. My nero had no creedance in this train of thaught so I will have to figure out what to say to the GP to get the test done. I would write more but the friend is showing up so I'm off to the O2 @ 25 LPM. Roland.

I had a blood test done the day i told the GP about it and he was all over it (he is really into the cluster challenge and has felt rather defeated in all his previous efforts).

"the friend is showing up" - are you some sort of freak!  I have used lots of words to describe the visitor, but I will die before describing him as a friend!

Remember....O2 is your friend!

Hope you are feeling better soon.  
Paul

MITYRARE wrote on Dec 26^th, 2008 at 11:52pm:

"the friend is showing up" - are you some sort of freak!  I have used lots of words to describe the visitor, but I will die before describing him as a friend! Remember....O2 is your friend! Paul

Part of the reason I say “my friend is coming” is because I have accepted the burden, I can not change it. I will not let him defeat me, for I am stronger than he is. I never worry about how bad it will be, I just think about how nice it would be if he left my home. He has let me know that he will say his part and I don’t waste the energy to evict him, so I accepted his presence.

PFW’s to all,

Roland. ;)

Quote:

Part of the reason I say “my friend is coming” is because I have accepted the burden, I can not change it. I will not let him defeat me, for I am stronger than he is. I never worry about how bad it will be, I just think about how nice it would be if he left my home. He has let me know that he will say his part and I don’t waste the energy to evict him, so I accepted his presence. PFW’s to all, Roland. ;)

If that works for you!

I'm not as at peace with him as you,  and as much as CH are part of me i still enjoy a good fight, and i am always willing to waste the energy in wrestling with the CH and kicking his ass all the way out the door. .....now with extra testosterone I should be able to kick him clear out of the country  haha

I find the fight to be a waste of energy, you can't stop him. Fighting the pain only makes it worse for me. So I bide my time, and he leaves quicker because he can see that he can't get to me. This helps allot in relaxing during O2 therapy…and allows you to better concentrate on your breathing technique, so the O2 works that much faster…

Rolo… ;)

wrote on Dec 27^th, 2008 at 12:43am:

I find the fight to be a waste of energy, you can't stop him. Fighting the pain only makes it worse for me. So I bide my time, and he leaves quicker because he can see that he can't get to me. This helps allot in relaxing during O2 therapy…and allows you to better concentrate on your breathing technique, so the O2 works that much faster… Rolo… ;)

That's exactly my position on it. I don't call it my friend, but fighting it takes too much out of me. I also just end up feeling worse, because I COULDN'T win against the beast in the end... Like I didn't fight him hard enough.

Fighting it leads to my body being more sore afterwards, and it just wears me out. So, I say "Alright. You're going to do this to me, but I don't have to make it worse on me."

You guys are pretty dense if you don’t get the "friend thing"… Like a woman has her "friend every" month!?!

Rolo. :D :-X

"pretty dense" is exactly how my wife describes me...haha

I think of friend in terms of the hymn " what a friend we have in Jesus" and to me Jesus is LOVE and CH is NOT love.....so that is where my "dense" little mind is coming from.

Anyhow... its twenty past two in the morning and this testosterone buzz is still got me wide awake, so its time for some amitript and sleep....goodnite folks..talk to ya soon

Paul, I can't tell you how happy I am for you!!  

All others, refer your doctors to this thread if they're really interested in cluster headache research.  Otherwise, print out and take info with you.

I keep re-reading this thread and getting more out of it.

VERY HAPPY MID-WEEK REPORT!

Last friday - 1 weak CH
Saturday  - no CH
Sunday - no CH
Today - no CH (weak shadow only)

Is my cycle ending two  months too soon? or is the testosterone therapy doing something?....I don't care...I FEEL GREAT!!!!!

Why don't we pay attention to this?

Yay!!  I'm so happy for you!!!

So am I.

Holding my breath..........

Donna   8-)                

Add another pain free day today!

If i am entering remission, it would be 9 weeks sooner than any other cycle in the past twenty two years...the only different variable being that i began Hormone Replacement Therapy on December 12.

I had noticably reduced pain levels on Dec 15 and was amazed enough by Dec 17 to start reducing preventive meds to eliminate that variable from the equation, and see if improvement would continue...and it most definately has.

Why don't we pay attention to this?

I SURE WILL FROM NOW ON!!!

Had the test done for Testosterone levels about 3 weeks ago.  Found out I was basically growing a vagina.

For a man my age one on the levels should be between 241 and 827. I was at 201. For the other level of free testosterone it should be between 7.2 and 24.  I was at 6.3.

I've been taking the lowest dose of Androgel for about 3 weeks and had another test done on Wednesday.  Should know something next week.

One the CH side -------  WOW!!!!!!.  Lighter hits, shorter hits, and getting farther apart each day.  And I'm actually sleeping!!!
Even slept through a thunderstorm the other night.  Didn't hear it, and ole fuck stick didn't wake me up as he has done for 30 years.

There just may be something to this.----

echo wrote on Jan 2^nd, 2009 at 11:25am:

Had the test done for Testosterone levels about 3 weeks ago.  Found out I was basically growing a vagina. For a man my age one on the levels should be between 241 and 827. I was at 201. For the other level of free testosterone it should be between 7.2 and 24.  I was at 6.3. I've been taking the lowest dose of Androgel for about 3 weeks and had another test done on Wednesday.  Should know something next week. One the CH side -------  WOW!!!!!!.  Lighter hits, shorter hits, and getting farther apart each day.  And I'm actually sleeping!!! Even slept through a thunderstorm the other night.  Didn't hear it, and ole fuck stick didn't wake me up as he has done for 30 years. There just may be something to this.----

Thank you for the report Echo...i hope more look into this and perhaps we will hear this message "echo" throughout this thread.

It will be interesting to see if your test results warrant an increased dose that may kick the Ch right out the door...I am so hoping for the best for you!

Thanks for posting.

Paul

This is very interesting.  I always thought my thyroid, wacky hormones, and ch were somehow related.  In hindsight, it's too much of a coincidence since it seemed to begin all at once.  Something to definately talk to the Dr. about.

Thanks for your persistence Donna.

Beth

If it helps just one person, I'll be happy.....but I'm praying that it will help at least the 5 out of 7 that one of the research groups had the good fortune of producing.

I certainly give Paul a lot of credit for his reporting and encouraging of others.  Keep it up Paul!!  I'm right behind you backing you up.

Should we direct the "General Posts" population over here?  Otherwise, they might miss this important trial going on right here on ch.com.

8-)

wrote on Jan 2^nd, 2009 at 9:51pm:

Should we direct the "General Posts" population over here?  Otherwise, they might miss this important trial going on right here on ch.com. 8-)

Done


Paul

MY WEEK #3 HRT REPORT
CH free all week
I am still taking 40 mg amitrip. for sleep to compensate for the testosterone side effect of never feeling tired at all.
Topamax now tapered to 75mg per day...continuing to taper off.

I have the worst head cold i have had in years but still feel great about starting a new year headache free (first time in 24 years)

WHY DON'T WE PAY ATTENTION TO THIS!

Paul

The Mayo Clinic says;

"Studies also indicate that people have abnormal levels of certain hormones, including melatonin and testosterone, during cluster periods. These hormonal changes are believed to be due to a problem with the hypothalamus. Other studies show activity in the hypothalamus during cluster attacks. But it remains unknown what causes these abnormalities in the first place."

Here is a link to the whole write up on CH from the mayo Clinic;

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Some on the board may be getting tired of me already with this testosterone stuff, but i plan on sticking around until we all are pain free one way or another.

I do really hope that more would give testosterone testing a shot...there potentially is so much to gain for some...maybe many...my life has been transformed this last couple of weeks...even if it does not last for one reason or another as other treatments have been.

I am so grateful for these pain free weeks...it was a blessing to spend tonight at my grandson's first birthday party as an active participant enjoying every minute...my family hardly knows who i am without the CH...time to get reacquainted.

Worth a look....to get the video to work click the man's face NOT the link below the pic


START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE



Paul

Bump
Beat ya!! :D
the bb

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.

14 days completely pain free for me...a new milestone.

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

Experiencing some unsettling light shadows yesterday and today as well as a general queasy, balance issue, unwell feeling...I think it may be the result of dropping Topamax too fast....

Reflecting here, i realize that i should take 8 weeks to taper off my 200mg dose, and here i am three weeks and a couple of days since starting to taper and i am down to my last 25mg...I dropped 50 mg in the last few days...probably not recommended...I will stay at this last 25 mg dose for a few more days until i feel better and then drop it.

Perhaps just a little over anxious to get drug free, to enjoy this CH free time.

Paul

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


Carol

Grandma_Sweet_Boy wrote on Jan 11^th, 2009 at 6:21pm:

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

Thanks Carol...I am hoping so too!  

I am going to have my Dr. contact Dr. Stillman (the one in Cleveland that did the hormone therapy research) and see if there are anymore ongoing studies happening with regards to the CH-hormone relationship and to see how the long term results are doing for those patients in the original study.

Paul

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

Quote:

Enjoying my first winter life in 24 years.

Now that rocks!!
all the best
the bb

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?

UnderTheRadar wrote on Jan 20^th, 2009 at 5:41pm:

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?

I do not know yet...I am still in cycle and the testosterone justs prevents any CH...

.....but i know i am in cycle because twice in this past week i have administered my "cologne" test, and both times it precipitated a faint shadow immediately....without the Testosterone I would have been in a full CH....been there, done that too many times.

I will be continuing to test occassionally to determine when the cycle ends, and based on 24+ years of regular winter cycles ( they were irregular cycles beyond the 24 year mark...had CH 30 years total) I know exactly when they would normally end.

I do know that i will get monthly blood level tests and I will report if any "spike" in hormone happens when my cycle ends, as well as report any changes should I happen to feel or notice, if any.

To this point in time i have not experienced any changes due to HRT other than difficulty getting to sleep ( never feel tired). I do not notice any super strength, have not needed sex 14 times a day and still can't grow a decent beard!  

The dose i am taking in small and the Doc. did not expect me to notice any changes. He may increase the dose if the blood levels are ok later this month in order to see if we can achieve an end to the cycle.

At this point I have a total "supression" of the CH. without the use of any other meds.

How long before my body adjusts to this and they come back???

Trying to remain optimistic, but have been bitten in the ass before when other therapies had very short lived success.....so far, this therapy has surpassed anything in 30 years for me.

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

MY WEEK #6 HRT REPORT

CH free all week....yessssss!

Triggered a shadow to see if I was still in cycle.

Still 30 mg amitrip. for sleep.(testosterone keeps me awake)

No preventers.

Still worried about how long this will last....enjoying every day to the fullest!

Paul

YESSSSSS......[smiley=sayyes.gif] [smiley=thumbsup.gif]

A doctor used to stop my CH attacks by giving me a shot of testosterone with some progesterone. I don't know the amounts and he has since died. The headaches would stop in a few hours rather than slogging on through their every 2 hours for 20-30 minutes day and night for 2-6 weeks.

His reasoning: a whiplash injury was able to trigger the CH because I have a slight pituitary deficiency. The pituitary would demand more thyroid, wouldn't get enough, and the headaches would break out. He said the progesterone helped boost the amount of thyroid hormone but he said he included testosterone to reduce (he said "avoid") risk of causing cancer and to boost the energy needed to get the needed amount of thyroid. Layman language. But he sent me to the head of NYU Hospital's endocrinology dept to double check his analysis before he prescribed Cytomel, a pre-digested thyroid medine. The dept head, Dr. Kaufman, said the tests showed a problem with the thyroid differential, not high or low and minor so most doctors wouldn't consider it significant, but it was. Cytomel led or contributed to osteoporosis so I had to wean off it.

Now what I do to prevent the cycles, as long as I get at least 6 hours of sleep every night - kelp pills (for the iodine that Cytomel, a pre-digested thyroid medicine, also gave). If I get less than 6 hours of sleep for 2 + nights, the CH hit for 2-6 weeks. If I can't go to sleep or wake at 4 and can't get back to sleep before I have to go to work, I now take Tylenol PM or Boiron Quietude (homeopathic sleep treatment) to make sure I get to sleep. I seem to get only about two cycles per year instead of every month.

PS - I'm a woman and the doctor said I still needed the testosterone

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?

1981 wrote on Jan 24^th, 2009 at 11:06am:

A doctor used to stop my CH attacks by giving me a shot of testosterone with some progesterone. I don't know the amounts and he has since died. The headaches would stop in a few hours rather than slogging on through their every 2 hours for 20-30 minutes day and night for 2-6 weeks. His reasoning: a whiplash injury was able to trigger the CH because I have a slight pituitary deficiency. The pituitary would demand more thyroid, wouldn't get enough, and the headaches would break out. He said the progesterone helped boost the amount of thyroid hormone but he said he included testosterone to reduce (he said "avoid") risk of causing cancer and to boost the energy needed to get the needed amount of thyroid. Layman language. But he sent me to the head of NYU Hospital's endocrinology dept to double check his analysis before he prescribed Cytomel, a pre-digested thyroid medine. The dept head, Dr. Kaufman, said the tests showed a problem with the thyroid differential, not high or low and minor so most doctors wouldn't consider it significant, but it was. Cytomel led or contributed to osteoporosis so I had to wean off it. Now what I do to prevent the cycles, as long as I get at least 6 hours of sleep every night - kelp pills (for the iodine that Cytomel, a pre-digested thyroid medicine, also gave). If I get less than 6 hours of sleep for 2 + nights, the CH hit for 2-6 weeks. If I can't go to sleep or wake at 4 and can't get back to sleep before I have to go to work, I now take Tylenol PM or Boiron Quietude (homeopathic sleep treatment) to make sure I get to sleep. I seem to get only about two cycles per year instead of every month. PS - I'm a woman and the doctor said I still needed the testosterone

Thank you for  your post...more and more stories are supporting positive results with hormone use for some hard to treat cluster patients.

Paul

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

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?

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

Paul, thank you for your reply.

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

Sorry y'all, I'm a little confuzed... :D  Can somebody "sum up" what is going on hormonally for a female episodic, and what we need?  

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.

alleyoop wrote on Jan 27^th, 2009 at 5:25pm:

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.

An interesting read...who wrote this information?

Is there a link to find this online?

" 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"

It would be interesting to see the credits for the information cited in the article.

Were the subjects of this report male or female?

What form of Testosterone and in what dose were they administered?

My Dr. relayed to me at today's appointment that Hormone treatment for clusters should not be attempted by anyone that has some success with traditional coping therapies, be that high flow O2 as an abortive or any of the available drugs abortive/preventers.

The only candidates that should try this treatment should be those resistant to all existing alternative options. This is exactly what Dr. Stillman used as his criteria in his study report which is available by looking back to the first post in this thread.

Hormone treatments are not to be taken lightly...there are some serious complications that can arise from this course of therapy, most notably, the increased risk of prostrate cancer in men. My Dr. has me tested (PSA) every three months when taking testosterone.

Considering the risks , this should be a last resort treatment option worth trying based on the published high rate of success for resistant CH sufferers that show low testosterone levels.

Paul

There is no link to find this online without paying for it.  Here is the first part of the article:

Clinical Notes
Clomiphene Citrate for Treatment Refractory Chronic
Cluster Headache
Todd Rozen, MD
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.
Key words: cluster headache, trigeminal autonomic cephalalgias, clomiphene citrate, testosterone, suprachiasmatic nucleus,
headache
(Headache 2007;••:••-••)
INTRODUCTION
Treatment refractory cluster headache is associated
with significant patient disability and even has
led to patient suicide. As such, there is an ongoing
search by headache specialists for new and effective
cluster headache preventive and abortive treatments.
Cluster headache is one of the trigeminal autonomic
cephalalgias (TACs), which along with SUNCT and
paroxysmal hemicrania are a group of headache disorders
considered to be hypothalamic influenced. On
positron emission tomography scanning and functional
magnetic resonance imaging (MRI), each of
these headache syndromes has shown hypothalamic
activation during headache attacks.1-3 Based on these
neuroimaging findings, there has been a recent focus
on hypothalamic modulation for cluster headache
treatment.Agents that directly or indirectly affect the
hypothalamus such as melatonin have shown efficacy
in cluster headache prevention, while direct hypothalamic
modulation with deep brain stimulation has
been effective in some of the most treatment refractory
cluster headache cases.4,5 Hormonal manipulation
of the hypothalamus may also be a possible
treatment strategy for cluster headache. Clomiphene
citrate is an ovulatory stimulant, which actively alters
hypothalamic estrogen receptors. The author has
already shown the partial effect of clomiphene citrate
in SUNCT syndrome.6Atreatment refractory chronic
cluster headache patient is presented who had a dramatic
and sustained response to clomiphene citrate
treatment. The possible mechanism of action of clomiphene
citrate for cluster headache prevention will
be discussed.
CASE REPORT
The patient is a 40-year-old gentleman who began
to develop cluster headaches at the age of 21 years.
The headaches started daily from onset and with no
remission periods. The patient would experience
between 4 and 8 cluster headaches per day.
From the Michigan Head Pain and Neurological Institute, Ann
Arbor, MI, USA.
Address all correspondence to Dr. Todd Rozen, Neurology,
Michigan Head Pain & Neurological Institute, 3120 Professional
Drive, Ann Arbor, MI 48104, USA.
Accepted for publication September 3, 2007. Conflict of Interest: None
ISSN 0017-8748
doi: 10.1111/j.1526-4610.2007.00995.x
Published by Blackwell Publishing
Headache
© 2007 the Author
Journal compilation © •••• American Headache Society
1
The headaches were 100% right-sided in a retroorbital/
periorbital distribution. On the side of the
headache, the patient would develop eyelid ptosis,
conjunctival injection, lacrimation, and nasal rhinorrhea.
He would also become very agitated, pacing the
floors or screaming out in pain. Each cluster attack
would last 60 minutes on average. He would experience
multiple headaches each evening after falling
asleep, being awoken 2 to 3 times per night. He was a
long-standing cigarette smoker since his teens. Neuroimaging
to exclude secondary etiologies included a
brain MRI with pituitary cuts and magnetic resonance
angiography (MRA) of the extracranial and intracranial
circulation. These were normal studies. Multiple
medications were tried for the patient’s headaches as
he had been seen at a dedicated headache center for
12 years.Abortive therapies were sometimes effective
including high flow oxygen (15 L/minute), sumatriptan
injection, and intramuscular dihydroergotamine
(DHE). Past preventive agents (all at top dosing
schedules) included: valproic acid, methysergide,
methylergonovine, verapamil, topiramate, lithium,
gabapentin, baclofen, lamotrigine, mycophenolate
mofetil, levetiracetam, oxcarbazepine, olanzapine,
clonidine, melatonin, nimodipine, tizanidine,
indomethacin, daily frovatriptan and naratriptan,
daily DHE injections, mirtazapine, pregabalin,
memantine, modafanil, ramelteon, as well as daily
opiates.As short courses of corticosteroids would suppress
his headaches, he also, prior to coming to the
headache center, had been placed on a year-long trial
of daily prednisone up to 100 mg per day which caused
a number of adverse events and eventually the cluster
headaches broke through back to a daily occurrence.
The patient also tried a number of anesthesiologic
procedures including: greater occipital nerve blockade,
cervical facet blocks, selective C2 nerve blocks,C3
medial branch nerve blocks, sphenopalatine ganglion
rhizotomy, and trigeminal nerve blocks, all without
benefit. He did not have a greater occipital nerve
stimulator trial or deep brain hypothalamic stimulation.
As most treatment options had been exhausted
the patient ended up on daily DHE injections, with
some improvement but still experiencing 1 to 2 attacks
per day. During this time period, the author was treating
a SUNCT patient with clomiphene citrate and
because this agent appeared to be helping another
hypothalamic influenced TAC, it was decided to try
this hormonal agent on the case patient. Prior to starting
the clomiphene citrate,hormone laboratory testing
was completed and showed normal total testosterone
levels (464 ng/mL; normal range 241-827 ng/mL), low
normal free testosterone levels (9.2 pg/mL;normal for
ages 30-39 years; 8.7-25.1 pg/mL), low normal luteinizing
hormone (LH) levels (1.8 mIU/mL; normal 1.4-
18.1 mIU/mL), normal prolactin, and follicle
stimulating hormone (FSH) levels.Clomiphene citrate
was started at 50 mg/day and the patient’s headaches
decreased from daily to one headache 3-5 days per
week. The dose was increased to 75 mg then 100 mg
and his headaches became 80% improved with rare
headaches 1 to 3 times per week. In addition to an
improvement in pain, he stated his sleeping pattern
was greatly improved, actually feeling rested after a
night sleep for the first time since his headaches began
in his twenties. After being on clomiphene citrate
for 40 days, his hormone levels were retested. Total
testosterone increased from 464 ng/mL to 1221
ng/mL, free testosterone increased from 9.2 pg/mL
to 22.7 pg/mL, and LH increased from 1.8 mIU/mL to
12.5 mIU/mL. Unfortunately, his insurance company
would not cover the cost of the clomiphene citrate,
so he had to stop the medication after 3 months of
treatment. His headaches returned to daily, multiple
headaches per day and he was placed back on
daily injectable DHE, which he remained on for
18 months. His endogenous hormones returned to
pre-clomiphene citrate levels. During his time on daily
DHE,he was given testosterone supplementation with
a testosterone cream but showed no improvement
after 3 months of therapy. Eight months ago, the
patient was placed back on clomiphene citrate 50 mg
per day and after 2 weeks of treatment, he became
pain-free and remains pain-free to this date. Not only
have his headaches completely alleviated with no
breakthrough attacks, but his sleep pattern has also
become “normal again” with the patient feeling completely
rested after a night sleep.

Here is the conclusion and references:

CONCLUSION
In conclusion, clomiphene citrate has now been
shown to be effective in the treatment of both
SUNCT and chronic cluster headache, both hypothalamic
influenced headache syndromes. Hormonal
manipulation may become a standard of therapy for
treatment resistant TAC cases. Clomiphene citrate’s
ability to directly modulate the hypothalamus and
possibly the SCN makes it a very attractive treatment
option when standard TAC therapy does not work.
The suggested starting dose of clomiphene citrate is
50 mg per day. If there is no improvement in headaches
after 1-2 weeks of therapy, raising the dose to
100 mg per day is suggested. Treatment response
appears to occur within 1-2 weeks of starting an effective
dose as demonstrated by our cluster and SUNCT
patients. Higher dosing schedules have not been
readily studied in the gynecologic literature so are not
suggested. The long-term risk of clomiphene citrate
treatment in males is unknown. In short course
therapy, adverse events appear to be minor but there
are reports of gynecomastia, testicular tumors, and
pulmonary embolism in men receiving clomiphene
citrate. Serial prostate-specific antigen levels are recommended
during treatment as well as prostate and
testicular examinations. The role of clomiphene
citrate in female TAC patients is unknown at present.
REFERENCES
1. May A, Bahra A, Buchelk C, Frackwiak RS,
Goadsby PJ. Hypothalamic activation in cluster
headache attacks. Lancet. 1998;352:275-278.
2. Matharu M, Cohen AS, McGonigle DJ, et al. Posterior
hypothalamic and brainstem acivation in hemicrania
continua. Headache. 2004;44:747-761.
3. May A, Bahra A, Buchel C, Turner R, Goadsby PJ.
Functional magnetic resonance imaging in spontaneous
attacks of SUNCT. Short-lasting neuralgiform
4
headache with conjunctival injection and tearing.
Ann Neurol. 1999;46:791-794.
4. Peres MFP, Rozen TD. Melatonin in the preventive
treatment of chronic cluster headache. Cephalalgia.
2001;21:993-995.
5. Leone M, Franzini A, Broggi G, Bussone G. Hypothalamic
stimulation for intractable cluster headache:
Long-term experience. Neurology. 2006;
67:150-152.
6. Rozen TD, Saper JR, Sheftell FD, Dodick DW. Clomiphene
citrate as a new treatment for SUNCT
(hormonal manipulation for hypothalamic influenced
trigeminal autonomic cephalalgias). Headache.
2005;45:754-756.
7. Leone M,Bussone G.Areview of hormonal findings
in cluster headache. Evidence for hypothalamic
involvement. Cephalalgia. 1993;13:309-317.
8. Nicolodi M, Sicuteri F, Poggioni M. Hypothalamic
modulation of nociception and reproduction in
cluster headache. II. Testosterone-induced increase
of sexual activity in males with cluster headache.
Cephalalgia. 1993;13:258-260.
9. Stillman MJ. Testosterone replacement therapy for
treatment refractory cluster headache. Headache.
2006;46:925-933.
10. Nicolodi M, Sicuteri F, Poggioni M. Hypothalamic
modulation modulation of nociception and reproduction
in cluster headache I. Therapeutic trials of
leuprolide. Cephalalgia. 1993;13:253-257.
11. Adashi EY. Clomiphene citrate: Mechanism and
sites of action-hypothesis revisted. Fertil Steril.
1984;42:331-344.
12. Chaube SK, Prasad PV, Tripathy V, Shrivastav TG.
Clomiphene citrate inhibits gonadotropin-induced
ovulation by reducing cyclic adenosine 3,5’-cyclic
monophosphate and prostaglandin E2 levels in rat
ovary. Fertil Steril. 2006;86(Suppl 4):1106-1111.
13. Neulen J, Zahradnik HP, Flecken U, Breckwoldt M.
The effect of clomiphene on the synthesis of prostaglandins
(PGF2 alpha, PGE2, PGI2) in human
endometrial cells in vitro with and without addition
of estradiol-17 beta or progesterone. Prostaglandins
Leukot Essent Fatty Acids. 1989;35:131-134.
14. Nattero G, Franzone JS, Savi L, Cirillo R. Serum
prostaglandin-like substances in cluster headache
and common migraine. In: Clifford Rose F, ed.
Progress in Migraine Research. London: Pittman;
1984:199-204.
15. Jenkins DW, Langmead CJ, Parsons AA, Strijbos
PJ. Regulation of calcitonin gene-related peptide
release from rat trigeminal nucleus caudalis slices in
vitro. Neurosci Lett. 2004;366:241-244.
16. Goadsby PJ, Edvinsson L. Human in vivo evidence
for trigeminovascular activation in cluster headache.
Neuropeptide changes and effects of acute attacks
therapies. Brain. 1994;117:427-434.
17. Kruijver FP, Swaab DF. Sex hormone receptors are
present in the human suprachiasmatic nucleus. Neuroendocrinology.
2002;75:296-305.
18. Kruijver FP, Balesar R, Espila AM, Unmehopa UA,
Swaab DF. Estrogen receptor-alpha distribution in
the human hypothalamus in relation to sex and
endocrine status. J Comp Neurol. 2002;454:115-139.
19. Cohen O, Vinker S, Yaphe J, Kitai E. Hormone
replacement therapy and WONCA/COOP functional
status: A cross-sectional population-based
study of women in Israel. Climacteric. 2005;
8:171-176.

Paul, if you reread my first post, I think that you will see that I am diagnosed refractory primary chronic cluster headache.  Conventional meds do not work with me.  Your Dr. is right in that anyone considering this therapy, should be refractory to conventional meds.  And you are right, hormone treatments are not to be taken lightly.  I actually took 6 months from the time my neuro wrote the first prescription for clomiphene citrate, before I actually filled it.  I read everything I could find on it, and with the prodding of increased CH activity, finally decided to take the plunge.  There is no doubt, but that I am a guinea pig.  We do monitor my hormones regularly, and I am scheduled for a PSA test in Feb.  But we are venturing into unknown territory, taking this drug for an extended length of time.  I do feel like it was a better choice than some of the invasive procedures that were my other options.  

But let me again point out the tremendous success that this treatment has afforded me.  I actually have a life now!

alley

Alley,
Thank you for this great information.
The Michigan HPNI is probably one of the best of the best for headaches...my old neuro (deceased) always spoke highly of their research and treatment practices....my neuro gave me Joel Sapers book Help for Headaches back in the 1980s.

I am thrilled at your success with your treatment. I now know what you mean when you say "I actually have a life now!"  AMAZING

I hope this thread offers an alternative for those CH sufferers that cannot find relief any other way...It is definately worth investigating.

Many thanks again for your post Alley.
Paul

Congrats Alley.  Very informative and very interesting.

Clomiphene Citrate
aka Clomid

An overseas name is 'Serpafar'

It appears to be quite easy to acquire.
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Wow, Alley- thanks for all the info- but that's hardly a "summary"!  :D

I'm asking, what is the basic difference between men and women as far as hormonal changes during and after a cycle, and the difference in treatment?

P.S. fair warning to all- if you write anything in hot pink, I can't read it without throwing up!!  :P

UnderTheRadar wrote on Jan 28^th, 2009 at 6:53pm:

Wow, Alley- thanks for all the info- but that's hardly a "summary"!  :D I'm asking, what is the basic difference between men and women as far as hormonal changes during and after a cycle, and the difference in treatment? P.S. fair warning to all- if you write anything in hot pink, I can't read it without throwing up!!  :P

UTR, you ask good questions, but unfortunately I am unable to answer them.  You might want to ask your doc, or do the research yourself.

alley

UnderTheRadar wrote on Jan 28^th, 2009 at 6:53pm:

Wow, Alley- thanks for all the info- but that's hardly a "summary"!  :D I'm asking, what is the basic difference between men and women as far as hormonal changes during and after a cycle, and the difference in treatment? P.S. fair warning to all- if you write anything in hot pink, I can't read it without throwing up!!  :P

There is some difference in treatment for women based on the Stillman report found as the first report sited in Donnas first post that started this thread....here is an excerpt...

"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."



Paul

shelticon2 wrote on Dec 2^nd, 2008 at 3:55pm:

If I may be so bold as to quote myself: shelticon2 wrote on Oct 2nd, 2008 at 1:32am:     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.....     Since posting this I have altered my diet to a T. friendly diet and have been able to take myself off of the TRT. I have lived the last month or so PAIN FREE ( almost.....I still get minor shadows and sometimes lite hits if I deviate from my diet plan). Drug free... Pain free...Hey, I can  live with that. It's worth a try... Take the test, It won't hurt a bit.. PFD's to All Jim

Anyone else using diet to increase Testosterone levels??  I am over 1/2 way through my cycle and am getting pounded, so I am going to covert my regular low carb, no sugar diet into a more carb friendly one including a zinc supplement (creatine is another one I'm going to check into), for now.  I have yet to read more on testosterone friendly diets and if anyone has any good links, please share them!

thanks,
~mel

[/quote]
Anyone else using diet to increase Testosterone levels??  I am over 1/2 way through my cycle and am getting pounded, so I am going to covert my regular low carb, no sugar diet into a more carb friendly one including a zinc supplement (creatine is another one I'm going to check into), for now.  I have yet to read more on testosterone friendly diets and if anyone has any good links, please share them!

thanks,
~mel
[/quote]


Melissa, I have been looking at this very question myself and from what i have found Testosterone is linked to zinc.  

There are tons of places on the net to find out about Test. friendly diets...all the weight lifting and body building sites have information...not sure how accurate all the info is though.

I also have found that zinc found in food along with protein and fat is most likely to help testosterone production. Fat and zinc are both required so adding steak, oysters(yuck), beans and nuts to your diet may result in higher test. numbers compared with just a zinc supplement. Zinc and fat are required.

I have been living  low-carb low-fat for a couple of years since i lost 85 pounds, and i have been successful in keeping it all off, but adding nuts and beans and such is definately not going to happen with me...just too risky and addictive....that being said, I do eat alot of lean steak as an important protein component of my low cal diet.

Paul

MITYRARE wrote on Jan 29^th, 2009 at 4:33pm:
Anyone else using diet to increase Testosterone levels??  I am over 1/2 way through my cycle and am getting pounded, so I am going to covert my regular low carb, no sugar diet into a more carb friendly one including a zinc supplement (creatine is another one I'm going to check into), for now.  I have yet to read more on testosterone friendly diets and if anyone has any good links, please share them!

thanks,
~mel
[/quote]


Melissa, I have been looking at this very question myself and from what i have found Testosterone is linked to zinc and fat.  

There are tons of places on the net to find out about Test. friendly diets...all the weight lifting and body building sites have information...not sure how accurate all the info is though.

I also have found that zinc found in food along with protein and fat is most likely to help testosterone production. Fat and zinc are both required so adding steak, oysters(yuck), beans and nuts to your diet may result in higher test. numbers compared with just a zinc supplement. Zinc and fat are required.

I have been living  low-carb low-fat for a couple of years since i lost 85 pounds, and i have been successful in keeping it all off, but adding nuts and beans and such is definately not going to happen with me...just too risky and addictive....that being said, I do eat alot of lean steak as an important protein component of my low cal diet.

Paul[/quote]

Paul, I had lost 83lbs on LC but eventually gained a bunch back from quitting smoking, a miscarriage and a birth.  Anyway, I'm willing to go off my current diet (LC, wheat & sugar free) in order to get a foothold on this cycle.

I'll let you know how I come out. :)

BTW, I checked the Creatine, and it really wouldn't help out at all unless I want it to sap the water from surrounding tissue to be stored in my muscle. :-/

Anyway, I'm broiling some steaks tonight with asparagus and crescent rolls.

Did you know that one thing body builders do to increase their testosterone is eat 18-20x their bodyweight in calories?? :o

[quote
Did you know that one thing body builders do to increase their testosterone is eat 18-20x their bodyweight in calories?? :o[/quote]

I think i will have to increase my physical activity before i try it!  

Imagining a 750 pound Paul!!!!! jokes

ahhh....so women need testosterone AND estrogen for this therapy... sorry, I tried to dig through and I couldn't find it!  (still getting very nauseous when I read too much on the computer.)  :P

Week #8 HRT Report

Still CH free.

I can still force (trigger) a light shadow, but not a CH.

Livin' it up!!!

Paul

Week #10 HRT Report

Wow... 10 weeks of testosterone treatment and still CH free.

Remarkable.

Hope it continues to work forever (fingers crossed)

Paul

That is awesome news, Paul.  My wish for you is that your PF time lasts forever. :)


Carol

Grandma_Sweet_Boy wrote on Feb 21^st, 2009 at 2:49pm:

That is awesome news, Paul.  My wish for you is that your PF time lasts forever. :) Carol

Thank you Carol.

Bump for testosterone treatment.

very interesting!

odd as I have a metabolic syndrome called PCOS in which there is usually an excess of testosterone.

I was actually on clomid (clomiphine) for 6 months for fertility treatment to make me ovulate, although in the context of CH I'm assuming its for treating men? I know its also given to men to improve sperm counts.

I was headache free on the clomid, but I do think that is probably a coincidence because my current cycle was triggered by some heavy duty meds in hospital (according to my neuro) rather than stopping the clomid a month before.... but who can say for sure...

Steambug, I think you need an endrocrinologist to sort it out, but i believe the Clomid to be directly responsible for your headache remission. Most neuros know squat.

Clomiphene is used by male anabolic steroid users to bind the estrogen receptors in their bodies, which blocks the effects of estrogen ( enlarged breasts which is a side effect of anabolic steroid use and testosterone injections)

It also restores the body's natural production of testosterone.  Testosterone and general hormone imbalances are linked to many suffering from CH because the hypothalamus is involved in regulation of hormone activity.

My fingers are crossed that by getting a blood endocrine workup and finding a hormone imbalance and sorting thru that you may have a shot at long term remission...check into it.

Paul

What an interesting thread.  I've just gotten my doctor to give me tests for vitamin d, magnesium and calcium levels due to reading a post on here about it.  The doc said he doesn't think it'll show anything but I wanted the test anyway, when I'm there I'll get the testosterone, oestrogen and melatonin levels checked too.  
Will update when I know anything.
Hope you're still PF Paul x

southwalessunshine wrote on Mar 25^th, 2009 at 12:15pm:

What an interesting thread.  I've just gotten my doctor to give me tests for vitamin d, magnesium and calcium levels due to reading a post on here about it.  The doc said he doesn't think it'll show anything but I wanted the test anyway, when I'm there I'll get the testosterone, oestrogen and melatonin levels checked too.   Will update when I know anything. Hope you're still PF Paul x

Please report back to us.  Fingers crossed for you.

I am painfree now into week 15!!!!!!!


paul

Paul, I am so cranked for you and any others that have given this a try with success. Thank-You for sharing! [smiley=thumbsup.gif]

WOOHOO!!....week 20 and loving it.


Paul

24 weeks

This was a pleasure to read.
Thrilled for you Paul.
Absolutely thrilled for you Bob (alley)

Feel good

E

Thanks E-Double!

How's life treating you these days? Still married? :)

alley

alleyoop wrote on Jun 1^st, 2009 at 6:39pm:

Thanks E-Double! How's life treating you these days? Still married? :) alley

yuppers she decided to keep me and my kid will be 3 in a week.
so glad u r well

Well,  I Baaaa aaack!  Not happy about it but you all know how this beast does....

Here is what has happened to me in the last 2 years...( Trust me...It will relate eventually to this thread ).  The beast came 2 years ago and my husband and I decided to take our vacation quickly as possible, as it would be vertually IMPOSSIBLE as the cycle continued.  We live in Texas and we packed up the trunk of the car with O2 and headed for the Colorado Rocky Mts.  I was only about 3 weeks into a usual 3 month cycle.  By the time we made it up to Estes Park, the Clusters COMPLETELY dissappeared.  This was absolutlely unheard of in my 18 years of CH.  "Something" broke the cycle...scratching my head, I just thanked God and went cluster free for nearly 13 months.  Another cycle hit and a couple weeks into it we did the same thing....packed off to Estes Park, CO.  They stopped AGAIN!.  Praise God.  Some friends thought it might have something to do with essential oils up there or something.  Who knows?

Now....I have been working at a Bioidentical Hormone Treatment Dr. for a couple of years now.  We have done lots of testing and since I am 55 and though some levels would look " normal " to the untrained classic Dr....they aren't optimal...I HAVE TO STRESS THAT DR'S NOT USED TO PRESCRIBING BIOIDENTICAL HORMONES DO NOT REALLY GO FOR OPTIMAL.....THEY USUALLY THINK NORMAL IS THE USUAL FOR YOUR AGE....and of course it is "usual" for women after a certain age to die of heart attacks, strokes, and get osteoporosis ( all of which can be curbed through hormone treatment ) so I take Progesterone and a very little bit of estrogen and I get a testosterone pellet implant every 3 -4 months.  I am blessed to be able to get it free from my Dr.  I have optimal levels now and physically was feeling better than I have felt in my life.....and then...again the Beast came....unfortunately this time was right AFTER we returned from the Mts.  If the cycle doesn't break soon, I am very tempted to take a 4 day wekend and head for Estes Park to see if it breaks the clcle again.

On another note....I saw a thread earlier about Clomed being used to help clusters.  As you might know it is often prescribed for men to stop the conversion of Testosterone to Estrogen.  It is also used for fertility in women.  I believe it also somehow effects the hypothalmous....As I shared on the other thread I am going to experiment with hcg....a pregnancy hormone that is currently being used off label for weight loss.  I am about ready to start this diet....for the 2nd time.  I lost 20 lbs the first time and have kept it off.  I can stand to lose another 20, but am most interested in seeing if it breaks this cycle.  I hope to start it next weekend.  It is a 6 week thing, so I will keep you posted.  I am currently in week 2 of my usual 3 month cycle...

Sorry for rambling, but it has been a long time since I was here and wanted to catch up.

Hi E-Double...Hi Nani....and everybody that I met in Dallas a few years back!

Hi again folks!

I have not posted for a bit since i have nothing new and work is consumming all my time (I own a seasonal road construction biz)

I do try to keep up with the forum posts the few days per month when I am not living out of a suitcase, and get great enjoyment in the general post area for sure.

I am in my 7th month of remission which I am assuming is the result of hormone therapy breaking my cycle earlier than ever before, in December of 08 (previous earliest remission in 30 years was in March).

My record remission over the past 30 years has been 9 months...so time will tell. There will be a party when i surpass the 9 month mark...fingers crossed!

I have continued on low dose testosterone even in my remission months.


Paul

I got the results of my blood test today. My Neuro ordered the test at my request but had my GP review it as it was quicker since I had an appointment today.

Results were enough to have my GP get more specific blood work ordered as my levels were a little low as were my platlets.

I'm grateful for this post. Thank you

Iddy

Just heard from another Cluster patient that uses 5-Hydroxytryptophan for effective treatment based on the hormone theory.

Basically over the counter health food store stuff.

Anyone ever try it?

Good old unreliable Wikipedia says it can be used for treatment of headache and pretty much everything else.

Experiences?


Paul

Just read this whole thread, and can't wait to see my doctor.

I hope you all keep it going, It is very interesting.

I have been in remision for 2 years, and am just back. Had my first big one last night (k-9) after 2 weeks of shadows....I have been reading and trying to catch up on the latest, before I go to the dr again.

Thanks a bunch     Lorac

Oh! And Paul....thank you very much for sharing.

Great pfds for you!        lorac

still on testosterone and still in remission.

26 more days til I break my "longest remission" period in 30 years.

Fingers crossed!

Paul

Well....After reading this , I was able to talk my Doc into looking into it  further... He ordered up a blood test  which I got ( no results yet) and gave me my first months supply of "gel"...... lets see what happens...

Mark

MarkG253 wrote on Aug 25^th, 2009 at 2:14pm:

Well....After reading this , I was able to talk my Doc into looking into it  further... He ordered up a blood test  which I got ( no results yet) and gave me my first months supply of "gel"...... lets see what happens... Mark

Fingers crossed for you Mark...a one month test should be enough to see if you respond at all to this treatment assuming you are in full cycle now.
Glad to hear your Doc has an open mind.
Paul

still on testosterone and still in remission.

I am already ecstatic about the fact that i have already experienced the second longest remission in 30 years!!

but 16 more days til I break my "longest remission" period in 30 years. (nine months)

Fingers crossed!

Paul

Paul, this is excellent news...!

I thought I would post this journal extract with similar positive results.

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.

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

Lefty..!

Hey Paul and All.....
Just a quick update on myself....
After using T for 2 days....
Within the first use,,, went from a CH every 8 hrs to 1 every 12 hrs..... I call that progress right off the bat...
been getting a little longer between each episode.  Lets see what a week brings!!

Mark

MarkG253 wrote on Aug 27^th, 2009 at 8:00pm:

Hey Paul and All..... Just a quick update on myself.... After using T for 2 days.... Within the first use,,, went from a CH every 8 hrs to 1 every 12 hrs..... I call that progress right off the bat... been getting a little longer between each episode.  Lets see what a week brings!! Mark

Oh man, I hear ya...... but just a caution that my doc told me....that wishing it would work can be enough some time to tip the body's balance in favour of the result you want....the true test is over time.....after three months my doctor conceeded that now he was getting very excited about the effects of the testosterone....and now 8 1/2 months later he is absolutely convinced of the effects of the treatment.

I hope you are every bit as lucky....rock on, and enjoy every pain free minute.  My life has been transformed in such a way that only a chronic sufferer that becomes pain free can appreciate...I wish everyone will get the chance to experience it regardless of which type of treatment does it for them.

Paul

Great news!  Can't wait to hear you when you break your record Paul, and I hope the beast never returns.

Jerry

Hi everyone...it's been a while.

Every day now, I am breaking my own record for the longest remission ever since getting CH about 30 years ago...I am heading into 10 month territory.

I still feel shadows from time to time, but not one has broken through to cause the agony I have historically endured and only you fellow CHers can understand.

My testosterone therapy continues using Androgel and my levels are significantly above the range which would be considered normal....this concerns me somewhat as I wonder at what point the doctor will reduce my dose (to minimize risks associated with too much testosterone)...will a reduced dose result in the return of CH??

I will continue to post from time to time for those interested in this new approach to CH management for intractable cases.

:)

Paul

For me, testostorone suppliment injections made my chronic CH worse. I was tested for testostorone levels.  I was at the low end of normal.  My doc gave me T injections.  Over time I came to realize that the T injections were causing a lot more breakthrough headaches, and so I quit taking them. 

John B wrote on Oct 7^th, 2009 at 1:24pm:

For me, testostorone suppliment injections made my chronic CH worse. I was tested for testostorone levels.  I was at the low end of normal.  My doc gave me T injections.  Over time I came to realize that the T injections were causing a lot more breakthrough headaches, and so I quit taking them.

My doc had heard of this happening and the general concensus of the docs who prescribe hormone  for clusters, is that a slow release gel or pellets are the only way to stabilize and even out the amount of testosterone in the bloodstream. Rebounds are said to occur with injections due to the way they cause rapid rise and fall of hormone levels rather than a constant rate.

That being said, hormone manipulation only works for some just as other medications may only work for some.

P

I hope that you are getting psa tests regularly.

Jimi wrote on Oct 7^th, 2009 at 3:26pm:

I hope that you are getting psa tests regularly.

I am. ;)

Jimi wrote on Oct 7^th, 2009 at 3:26pm:

I hope that you are getting psa tests regularly.

Yes...all the time...just got results back yesterday again.  With my luck, that will be the thing that eventually screws this up for me...but for now i am smiling!

P

Hi

Try taking vitamin-D and get your blood level up between 50-80 ng/ml. It will regulate your testosterone, serotonin and melatonin level to normal. I haven’t had any CH for 8 months now. Another benefit is that my PSA has decreased over 20 %.

Niels   

My first headache-free September and October in 28 years.

"Why don't we pay attention to this"....without reading this 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

Thank you for this post.
I am compiling a list of things for my husband to try as he's only recently been diagnosed, and he has an appointment with doc next week.. so I shall get him to have test.. fingers crossed!

Setting a new personal remission record every day.

PSA tests still great.

Had a polyp removed in a routine colonoscopy last week (a frequent occurrance for me)...just keeping the fingers crossed that the pathology comes back OK so i can continue hormone treatment.

Paul

great news Paul!  You have no idea how happy I am for you!  I'll be praying about that pathology report.

Jerry

Wow post is super long but fantastic info. I apologize for being redundant. But in summary, I want to try this test so I can report back my findings. I need to get a blood test to look at testostorone. Do I want to do this in cycle and out or both.

Thanks

Jrcox

Jason,

I would think in cycle, because it seems to me most effective for those of us who are chronic. 

just my $.02

Jerry

Jrcox wrote on Nov 21^st, 2009 at 11:44am:

Wow post is super long but fantastic info. I apologize for being redundant. But in summary, I want to try this test so I can report back my findings. I need to get a blood test to look at testostorone. Do I want to do this in cycle and out or both. Thanks Jrcox

If you have to pay for the test, then In-Cycle. If you are one of those that testosterone will help then your testosterone levels would be lowest in cycle.

For those in Canada where tests are free or for those of you elsewhere with a insurance plan that pays for tests, it is wise to have a baseline test out-of-cycle so that your doc can assess the hormone change once again when you are in cycle.

Hormones only help some...and if you are prone to dropping testosterone levels while in-cycle, you may be a better candidate for treatment than one whose levels are balanced both in and out of cycle.

P

LONG SIGNIFICANT POST

I experienced an unwanted visit from someone from my past last night. :(

As i have mentioned before in this long thread, I have experienced slight faint shadows that would indicate when I was in my cycle while on this hormone therapy, but i have been 100% CH free since december of 2008....and I am thankful for every pf day.

Last night i awoke to the head/eye pain that I have been so familiar with for 30 years.  Only a kip 5 but very disappointing all the same. :'(

I will continue on with my hormone therapy with a positive attitude in the hopes that this was just a rare exception.

I have always felt that hormone treatment is a therapy for CH... not a cure...just another tool that may work for some.... just as oxygen therapy works for many, and just as pills, caffeine/taurine drinks, or illegal substances work as coping therapies for others.

I am absolutely thrilled with the longest remission ever experienced in 30 years...it was a much needed rest....the question is, do I get another 11 months before the next CH?

Stay tuned.

Fingers permanently crossed!
Paul

Sorry to here about that Paul...
I just want to say: Thank you for all the info you have bought us. I will be meeting with my neuro next Thurs, Dec 3rd and have collected much information from you and the others.
Hopefully the unwanted visit does not return and you get back on track pf.

I have been tested both in and out of cycles do to my meds I'm on for my seizures they have not been hugely different for me granted a little lower during the cycle but never enough for the doc to want me to go on hormone therapy but that is just me like somethings work for some while others something totally different works

I was tested extensively for imbalances.  Used bio-identical hormone replacement compounded specifically for me by the pharmacist for 2 years and I never had a break from my clusters.  I did feel better, but stopped due to the long term possible side effects.   

I think I did not read it correctly, so what kind of hormone you used Joni and did they help in reducing ammount of headaches or?

MattyAA wrote on Nov 27^th, 2009 at 4:41pm:

I think I did not read it correctly, so what kind of hormone you used Joni and did they help in reducing ammount of headaches or?

"I was tested extensively for imbalances.  Used bio-identical hormone replacement compounded specifically for me by the pharmacist for 2 years and I never had a break from my clusters.  I did feel better, but stopped due to the long term possible side effects."

I don't remember what all was in my bioidentical replacement therapy, but I do remember that Testosterone was one of them.  It has been a few years ago.  It was no help. 

Oh alright, thanks for explaining, english isn't my native language so... some shortcuts may be hard for me to understand.

Paul,

Sorry for the visit.  Hope it was just a rogue hit that got through, and you don't get any more.  Will be watching with interest to see how you get on from here.

Jerry

Callico wrote on Nov 27^th, 2009 at 10:21pm:

Paul, Sorry for the visit.  Hope it was just a rogue hit that got through, and you don't get any more.  Will be watching with interest to see how you get on from here. Jerry

Thanks Jerry,

I hope you are correct that is was just a random "rogue hit" that got though the hormone barrier...not as much as a whisper of a shadow since.

You knowI willcontinue to post milestones in remission as well as any "rogue" hits or new cluster periods if and when they happen.

Take care.

Paul

One year ago today I began Testosterone therapy for my CH.

...headaches diminished immediately and December 30th 2008 was  my last CH (until one random one broke thru a few weeks ago).

Longest remission ever for me.

I can still tell when "in cycle" as distant faint shadows can be felt with clock-like regularity...they just do not break thru...Ok maybe once in a year!

Paul

That's such good news Paul.  Glad you seem to have found your magic bullet.  Here's hoping that rogue hit doesn't ever find you again.

Carol

MITYRARE wrote on Dec 12^th, 2009 at 9:40pm:

One year ago today I began Testosterone therapy for my CH. ...headaches diminished immediately and December 30th 2008 was  my last CH (until one random one broke thru a few weeks ago). Longest remission ever for me. I can still tell when "in cycle" as distant faint shadows can be felt with clock-like regularity...they just do not break thru...Ok maybe once in a year! Paul

I have had that happen a few times when I started a new medication...it's a great break, but only until they learn how to get around it!  The longest was 3 years.

Joni...I hear you, and I hope you are wrong.

Regardless, it is about quality of life ... and this past year has been a gift... I have been able to attend social functions, purchase a couple more race cars and actually be fit enough to race them, enjoy Christmas and Easter celebrations, and go for winter walks without CH following me home.

I do appreciate every PF day and should CH return, I can still feel great about this last/best year that i have enjoyed.... more than any other in the past 30 years.

Paul

WOW...two consecutive Christmas celebrations without a headache!

Paul
Breaking my personal best headache-free record each and every day!

Keep 'em comming Mitty! Cheers

I was contacted by a Doctor some time ago regarding my testosterone therapy.  He has two intractable patients that he had become frustrated with finding no solution.

I advised that they try the high flow oxygen with non-rebreather mask and see how that goes.   One had already tried that (and I think is on this forum).

I also relayed my personal hormone therapy experience (so far so good...fingers crossed)

I received this email today...

"Hi Paul,

I have had great success with the testosterone in patients. What dose of the androgel did you switch to once the headaches went away with the injections?

Thanks"

To set the record straight, I never received injections first, but just started directly on the gel applications for a more even blood testosterone level.  Some of the studies I referred to the Doc. some time ago suggested injections and I figure that is how he decided to approach the issue. 

Testosterone is highly regulated here in Ontario, Canada and a gel prescription cannot be refilled one day before the dose runs out...so some doctors try by injection in their office and see what result they get before prescribing the gel which sells for a fortune on the black market here.

Thought this may be of interest to followers of this thread. 

Paul

Count me in.  Based on this thread and associated research I had my T level checked.

116 - should be at least 280.

I started gel therapy today. 

-Dennis-

DennisM1045 wrote on Jan 21^st, 2010 at 2:10pm:

Count me in.  Based on this thread and associated research I had my T level checked. 116 - should be at least 280. I started gel therapy today.  -Dennis-

My fingers are crossed for you Dennis

...how much gel are you starting with?  (I have always been on 5 g... also known as 4 pumps of the bottle once per day...2 pumps on the left and 2 pumps on the right)

Please keep us posted...the next two to three weeks should show promise if you are one of the types that respond to testosterone for Clusters.


Paul

I'm on Testim.  Not Androgel.  It comes in single dose tubes.  I'm not sure of the dosage.  I'll have to look at it tonight.

I'm reading a lot of concern over accidental exposure.  It has my wife a bit freaked out.  From what I've read, if you wash your hands thoroughly and don't let anyone come in contact with your skin after application (while it's still wet) you should be safe.  Right?

-Dennis-

-Dennis-

DennisM1045 wrote on Jan 22^nd, 2010 at 12:51pm:

I'm on Testim.  Not Androgel.  It comes in single dose tubes.  I'm not sure of the dosage.  I'll have to look at it tonight. I'm reading a lot of concern over accidental exposure.  It has my wife a bit freaked out.  From what I've read, if you wash your hands thoroughly and don't let anyone come in contact with your skin after application (while it's still wet) you should be safe.  Right? -Dennis- -Dennis-

And signing your name twice is not one of the side-effects. I don't think.

DennisM1045 wrote on Jan 22^nd, 2010 at 12:51pm:

I'm on Testim.  Not Androgel.  It comes in single dose tubes.  I'm not sure of the dosage.  I'll have to look at it tonight. I'm reading a lot of concern over accidental exposure.  It has my wife a bit freaked out.  From what I've read, if you wash your hands thoroughly and don't let anyone come in contact with your skin after application (while it's still wet) you should be safe.  Right? -Dennis- -Dennis-

Hands are good after washing...  BUT ...No direct contact with the "site of your application" with the  opposite sex for five (5) hours after application...or you could risk your wife/girlfriend/significant other, or all three, getting more hairy and deeper voiced.  :o

Once you find the best application time that safely protects your partner from absorbing any hormone, it becomes routine...or you learn to have sex without touching certain areas of your body (application sites)...which can be risky and add an element of adventure to your sex life. ;)


Payl

Any worries about laundry?  I wait till the application site is dry before putting on a shirt but there has to be some transfer.

-Dennis-

Guess who just got their testosterone test results back.
Me!
Guess who's testosterone levels are extremely low!
Guess who has fucking hope. And yes i know that if it doesn't pan out i'm going to crash hard but hey i believe everything happens for a reason and mightrare you may have saved my life. i live in Ontario too and if this works out...well we're going to have to have a long talk on how i can show you my gratitude.

Thank you so much for posting this I simply cant thank you enough.

Very interesting Sam 
I hope your doctor uses your test results wisely and gives you a chance to try hormone therapy.  I sent you an email.
Fingers crossed for you!
Paul

Three weeks today since I started HRT. 

My Oxygen tanks are beginning to gather dust.  I haven't even shot a shadow in over a week.  I

know this is early but my post Christmas cycle is usually getting started right about now.

-Dennis- (cautiously optimistic)

DennisM1045 wrote on Feb 11^th, 2010 at 12:35pm:

Three weeks today since I started HRT.  My Oxygen tanks are beginning to gather dust.  I haven't even shot a shadow in over a week.  I know this is early but my post Christmas cycle is usually getting started right about now. -Dennis- (cautiously optimistic)

Sweeeet Dennis...continued good luck!

If you are like me you may be tempted to try a few known triggers just to see what happens (not recommended)...in my case when I "trigger" even tho I am not getting CH I can still induce a faint shadow... last summer during my traditional summer remission I tried and no shadow developed.... so I guess CH are always there when in regular cycle, just lying below the surface for me....but that is OK as the HRT is doing its job....for now:)  I triggered last week and set off a mild shadow instantly ( definately in cycle).

My staff have been asking why this winter I am so "turned on" and ready to slay the marketplace with new sales campaigns...without CH I can now market all year round and last year's sales (while under HRT with no CH) were up over 25%....and all in a bad economy.
Maybe i'll be able to retire sooner than later:)


Paul

I love the sound of progress!!!

Jerry

Thank you for all of the great info.  My husband has had CH for about 30 years.  Right now is his worst cylce EVER.
We have no insurance right now, and no money, but we're going to try to find a way to get him tested and try the HRT if he's low.
Thank you very much!

Good luck!  Be careful with hormone supplementation.  Keep you CH arsenal handy.

hello all, i have been reading about the low testosterone levels and i had my husband get tested, and lo and behold his levels are low. not sure how low yet he will go see his doctor in a day or two. he is right in the middle of a cluster cycle right now and nothing is helping with the pain! i started him on the kilowatt 3 supplements on Tuesday of this week and they haven't produced anything positive as of yet. he drinks red bull by the 12 pack. and takes the taurine capsules also. oxygen didn't seem to help him either. i have been searching high and low for something, anything that will give him some relief!!! it breaks my heart to see him like this!!! if anyone has any advise on the testosterone or some kind of pain relief we are open to advise!!! thank you all for your willingness to talk about this monster and your advise on coping!!! I'm just a loving wife searching for relief for my husband! when he is in a cycle he gets so down and out and feels like he will never find anything to help get the monster out of his head! thanks again for your help and support this site is a God send!!!!!

kas wrote on Feb 18^th, 2010 at 2:39pm:

hello all, i have been reading about the low testosterone levels and i had my husband get tested, and lo and behold his levels are low. not sure how low yet he will go see his doctor in a day or two. he is right in the middle of a cluster cycle right now and nothing is helping with the pain! i started him on the kilowatt 3 supplements on Tuesday of this week and they haven't produced anything positive as of yet. he drinks red bull by the 12 pack. and takes the taurine capsules also. oxygen didn't seem to help him either. i have been searching high and low for something, anything that will give him some relief!!! it breaks my heart to see him like this!!! if anyone has any advise on the testosterone or some kind of pain relief we are open to advise!!! thank you all for your willingness to talk about this monster and your advise on coping!!! I'm just a loving wife searching for relief for my husband! when he is in a cycle he gets so down and out and feels like he will never find anything to help get the monster out of his head! thanks again for your help and support this site is a God send!!!!!

You didn't mention if he takes medication to prevent and abort?  It might be a better use of your time.

kas wrote on Feb 18^th, 2010 at 2:39pm:

hello all, i have been reading about the low testosterone levels and i had my husband get tested, and lo and behold his levels are low. not sure how low yet he will go see his doctor in a day or two. he is right in the middle of a cluster cycle right now and nothing is helping with the pain! i started him on the kilowatt 3 supplements on Tuesday of this week and they haven't produced anything positive as of yet. he drinks red bull by the 12 pack. and takes the taurine capsules also. oxygen didn't seem to help him either. i have been searching high and low for something, anything that will give him some relief!!! it breaks my heart to see him like this!!! if anyone has any advise on the testosterone or some kind of pain relief we are open to advise!!! thank you all for your willingness to talk about this monster and your advise on coping!!! I'm just a loving wife searching for relief for my husband! when he is in a cycle he gets so down and out and feels like he will never find anything to help get the monster out of his head! thanks again for your help and support this site is a God send!!!!!

Welcome!!
i can relate to your post,  just a wife who feels so bad for what husband is going through and trying to find some relief.   Per Joni's post below,  the testosterone wasn't really found to prevent or abort, but just give some relief.  less intense pain, less frequency, according to most of the studies. 
from what i read, i don't believe low testosterone causes a cycle, but once in cycle, the hypothalmus is not properly functioning and that results in low testosertone.  so the HRT,  just seem to aleviate some of the severe symptoms.

he  started on the androgel last saturday,  the first 3 days he had immediate relief with pain and frequency almost cut in half, but the last 3 days,  they are almost back to the unbearable level as before. 
we're still hopful though that this will help.

thank u both for ur reply! my husband takes hydracodone and oxycodone right now to try to abort. he has been on gabapentin, and one that made him violently sick(i cant remember the name of it right now), he has tried oxygen,nothings seems to work for him. he is very hard to medicate it takes way more for him than it does for most people so that adds to the frustration!!! and meds don't work on him for very long, his body builds a tolerance to everything! he has a wonderful doc, she is willing to try anything to see if it helps! I'm sure I'm forgetting things that he has tried! again thank you!!!

Narcotics will not help and will cause an additional problem!!!

he only takes them at night!! what should he ask his doc for then! he has had clusters for 2 1/2 yrs now. we just dont know what he needs.

any of those meds would only cause my husband to have more headaches.
there's a lot of different meds people take,  i think none are 100% effective.

as a supporter, keep doing your research on here.  print articles and studies,  go with him to the doctor.

possible addiction to pain meds is not the way to go.  its a painful condition but pain meds don't usually help the overall problem.

keep at it girl....you'll never cure it....but keep trying new stuff.

kas wrote on Feb 18^th, 2010 at 7:40pm:

he only takes them at night!! what should he ask his doc for then! he has had clusters for 2 1/2 yrs now. we just dont know what he needs.

Sounds like you need to do a lot of reading here.  Start with the medical info on the left hand side.  Then read other posts by newbies and you will see some answers there.  Also, make a post in the newbie section describing his headaches...chronic or episodic, characteristics, and meds taken, etc.  You will get more answers that way.

I take Verapamil as a preventative and Zyprexa as an abortive.  I have never had a narcotic in my 25 years of headaches.  Many here like oxygen, lithium, Imitrex...etc.  Read, read, read!

Hey Kas, what Litres per minute oxygen is your husband using? What kind of mask is he using? Non-rebreathing type? Try asking him to deep breathe on oxygen as if tyring to hyperventilate, some people report only with higher flow and hyperventilating they acquire relief. Did he try Imitrex inject/nasal spray? Did he got prescribed Verapamil and/or Gabapentin/Neurotonin?

And like Joni said Zyprexa is a nice try to see if it aborts hits too.

But about topic, I think you could give the testosterone a go.

thanks again guys!! i have been reading lots of posts on here and i just get so confused, but u all have helped me so much! my husband will see his doc today and im gonna go with him and i have written down ya'lls suggestions. and im gonna get him to try the oxygen again too!!!! he has a wonderful doc that is willing to try anything to get him some relief, so he is blesssed there!! and im sure she will put him on an hrt since his levels r low and he has not been feeling well in other areas either and im sure that has to do with the low levels along with the clusters! i will keep u updated on what his doc puts him on! thanks all!!!

No problem Kas, one thing you need to stick to, try everything that is suggested here, until something works for your husband, and if something failed try with bigger dose if doc allows or try again.

hello again, went to the doc with hubby this a.m.  she put him on oxygen 15liters. propranolol 40mg. and androgel for the low testosterone. i will let ya'll know if it works.

Hi Kas,

I found the HRT to be very helpful.  It didn't totally kill mine, but gave me about a 50% improvement. (very subjective I know.  Hard to quantify)

He need s a good prevent to go with it.  I've been using Kudzu for the last several years.  Have found it to be more effective than the meds and with out the side effects I was experiencing with the Rx's.

The biggest thing about O2 usage is the method and the mask.  I strongly suggest you get one of the O2ptimasks from the CH.com store.  It costs a little more, but it was designed for clusterheads and has been a godsend for me.  I bought two, and wouldn't go back to the old non-rebreather for anything!  I would also suggest you consider buying a 25lpm regulator (or higher) and using it.  I'm one who said oxygen didn't work for me and quit using it for several years.   I had been on 15lpm with the old non-rebreather mask and had minimal results unless I got to it within a minute or two of the hit.  Once it got beyond a K4 it wass to late to bother.  Now with the new mask and 25lpm I can knock out most hits within 5-8 mins even whin they are in the high Kips.  My next investment is probably going to be a demand valve.

Keep reading and asking questions.  That is what we are here for.

Jerry

I' been away from home for a few days and just returned to see activity in this thread again.

My testosterone therapy (androgel) has resulted in only one CH in the last 14 months... may not seem like a long remission to some but to me this is a monumental positive change.

Throughout the whole time, I have continued to take 30mg of Amitriptyline  at bedtime to induce sleep quickly beyond shallow REM sleep (where CH traditionally have hit me).

This combination has not cured anything, but has kept the clusters to the occassional very faint shadow that can be easily induced by my traditional triggers...but a full blown CH cannot be precipitated even if I try and force my known triggers.

HRT can be life changing for a lucky few....many have spoken to me about their excellent response to this treatment...HOWEVER...about almost as many others have had no change with HRT...in most cases those people have experienced some benefit from traditional drug therapies and /or Oxygen therapy.

  The body of evidence that I have read/ heard and experienced personally, seems to indicate that those most likely to have a benefit using HRT are those where nothing else works at all (drugs, O2 etc) and whose testosterone levels are low during cycle.

For those with positive results, Some have reported complete remissions, some still had CH but with less frequency, and others only experienced substantially reduced pain levels, similar to some of the recent posts in this thread have indicated..

Results, if any, should start to be noticed within three weeks of the start of HRT...if nothing changes after 6 weeks, stop wasting your money.

Just my opinion as a person who is now in contact with quite a few people experiencing different levels of success with this approach.

So far, none that I have spoken with have found that the CH have found a way to come back with a vengance in the way they they often do with other drug therapies....perhaps that will eventually occur and If it does I will report those findings too... just as i did when I experienced a random CH in early November (which scared the hell out of me)...thank God, despite the fact I know I am in cycle, I have not had any other episodes since.

Good luck with this approach, it is not a silver bullit, but it has been documented to help a small population in the CH community.

Paul

Could someone please inform me on how you are dividing up your 6mg imatrex shots into three separte doses? I really need to strech them out as I only receive limited supply from insurance....

There is a list of links to the left hand side of the screen.  Click on the one labeled "imitrex tip".  It's the 7th one down the list.

-Dennis-

Thanks Dennis

Bump

Bad economy resulted in losses in most companies in my industry yet my business sales went up 35% and profits up 40%...

I attribute this entirely to not having to deal with CH... I am finally able to run my business year round (if I so choose) and not be off for months due to CH...

I am still on cloud nine over this therapy...wish it worked for everyone... and I selfishly hope it keeps working well for me :)

Paul

This is a post of rambling....thoughts I've entertained since last talking with you guys. 

I've been watching the progress of this thread and wish to applaud those of you who have partaken in this venture.  I guess venture is the right word because this has certainly been "a course of action that involves risk and uncertainty".

Jerry, Dennis, Paul......thanks for keeping this alive and for your frank and honest answers.  I really believe that this will eventually become a large study and research project, and it is you guys who have created a great deal of interest in it.  I couldn't believe it when I saw the number of "views" to this thread.

Paul, your dairy is a great tool. Don't lose it because it might be valuable to the medical professionals.  Is your own doctor still impressed?  Someone should put a bug in Goadsby's ear.

My son started his therapy last summer and is having sweet success with it!!  Last 2 cycles were "no shows".  Boy, was he surprised when his first test results came in.  He was 2 numbers from the bottom..big 6 ft. tall, muscular man.  Isn't it a shame that the word "testosterone" has such a negative effect on people?

Anyway.....just wanted to stop by and say Hello and keep up the good work.  There's such a long way to go yet.  Just keep rowing.  Maybe start a forum on this very subject.  Get the word out........create interest.

Thanks for being here for others....you're great!

If I can help in any way, e-mail me. 

Hugs,
Donna Har

Nice to see you post again Donna,

I know of 11 others that are currently using Testosterone with various degrees of success...from fewer hits, reduced pain, and 4 which have had instant extended remission as soon as they started the HRT...and of course my wonderful experience too!

Glad to hear your son is doing well also.

What we really need is a new CH researcher to take a fresh look...no disrespect to the current researchers and their current lines of research, but there are not enough CH researchers period, to keep up with scientific approach testing new and emerging treatment options such as HRT, psychedlics, occipital treatments etc. 

...all of these have treatments have merit worth proving and improving for better treatment options. 

The CH phenomenon is as varied as the people who have them and multi discipline research by as many reseachers as possible will provide the most relief to the largest population of sufferers in the shortest timeframe.

How does a researcher get intersted in this type of CH work and what is in it for them?

Paul

Your optimism is appreciated, however it is probably naive. 
Research = $$$$$$ = Most affected/Fatal/Contagious, etc., and CH doesn't fit that bill.

Donna.m.har wrote on Mar 18^th, 2010 at 7:47am:

Is your own doctor still impressed?

Sorry I forgot to answer this question Donna. My doc is absolutely impressed.

My business partner's best friend is a doctor and he contacted me to find out about this whole hormone deal. He has now prescribed to three ch patients and two are doing fabulous and one has improved but not in total remission. He is also very impressed and is passing the word in the medical community here in Ontario.

P

"How does a researcher get interested in this type of CH work and what is in it for them?

Paul"

I don't have a clue, but let's think about who would benefit most by such an accomplishment as to prove the relationship between CH, hormone distribution, the hypothalamus and whatever else might be involved. I would think that it would have to be someone not solely interested in the $, but also in the plight of the sufferer.  I am thinking an "educator".  Perhaps a neurology professor teaching in a hospital based university.

I know a young woman (who was an RN for Hospice until an unfortunate injury was inflicted upon her 2 years ago), who  was such a great patient advocate that she is now thinking about going for her Master's degree so that she can teach a specific attitude/treatment she would use if she was able to be a nurse again. Personal experience really motivates.  Mistreatment puts courage in the voice and spirit.

Know any journalists?

We must keep thinking...daring to be vocal....touching people.  I wish I knew the answer.  Brochures and fliers don't work...even in doctor's offices.  We've tried that.

We've tried several things, but just haven't hit the right button yet.

Any ideas out there?

I have a 13 year old grandson who is suffering from severe, disabling "migraine" headaches right now.  His father is my son who also started with "migraines" at age 12, which morphed into episodic clusters when he turned 17.  I guess I have a very selfish reason for pushing this, guys and gals.

Having lived with clusterheadaches for 28 years myself, I can speak first hand as well.

Here's something curious I've just read........offspring with cluster headaches whose mothers were low in testosterone during pregnancy tend to have index fingers that are as long or longer than their ring fingers. (Not necessarily the mothers tho)  They also use the artistic hemisphere of their brains more than those without CH, and are good in math..  This is true in my children....coincidence?

Pop quiz time.....LOL.

PFDN all.

Donna.m.har wrote on Apr 22^nd, 2010 at 3:09pm:

"How does a researcher get interested in this type of CH work and what is in it for them? Paul" I don't have a clue, but let's think about who would benefit most by such an accomplishment as to prove the relationship between CH, hormone distribution, the hypothalamus and whatever else might be involved. I would think that it would have to be someone not solely interested in the $, but also in the plight of the sufferer.  I am thinking an "educator".  Perhaps a neurology professor teaching in a hospital based university. I know a young woman (who was an RN for Hospice until an unfortunate injury was inflicted upon her 2 years ago), who  was such a great patient advocate that she is now thinking about going for her Master's degree so that she can teach a specific attitude/treatment she would use if she was able to be a nurse again. Personal experience really motivates.  Mistreatment puts courage in the voice and spirit. Know any journalists? We must keep thinking...daring to be vocal....touching people.  I wish I knew the answer.  Brochures and fliers don't work...even in doctor's offices.  We've tried that. We've tried several things, but just haven't hit the right button yet. Any ideas out there? I have a 13 year old grandson who is suffering from severe, disabling "migraine" headaches right now.  His father is my son who also started with "migraines" at age 12, which morphed into episodic clusters when he turned 17.  I guess I have a very selfish reason for pushing this, guys and gals. Having lived with clusterheadaches for 28 years myself, I can speak first hand as well. Here's something curious I've just read........offspring with cluster headaches whose mothers were low in testosterone during pregnancy tend to have index fingers that are as long or longer than their ring fingers. (Not necessarily the mothers tho)  They also use the artistic hemisphere of their brains more than those without CH, and are good in math..  This is true in my children....coincidence? Pop quiz time.....LOL. PFDN all.

Donna, great ideas.....

but, I was thinking of a different approach

....the hormone manufacturers certainly have an intestest in any application sales) of their product....the key to studies may be in their ability to grow their market a wee bit on a product already developed and marketed...

what would it cost for them to send out a memorandum to doctors indicating this probable headache/hormone relationship? and asking the medical community to undertake some trials and research?

P

That is a very good idea, Paul, and sounds like a workable idea.

Someone very knowledgeable (like your own doctor who has been working with you on this) might want to contact such a source and explain the success that you, and a few others that you know, have had.

If he isn't interested, I'm not too shy to do some inquiring.  Making a few phone calls...writing a few letters. 

If they were to become interested and informed, they would probably send out sales reps. to doctors offices, etc.  This is one of the things that drug companies do...direct sales to the docs.

When I worked in doctors offices, we had rep's bringing in samples and literature, as well as great lunches, all of the time. They spend lunch time with the doctors and employees as a time for education about a new or improved product.

Is there still a chat room here?  Or on the OUCH site?  It would be interesting to get a group together and toss ideas around. 

Now that we have a some results, and a few people paying attention to this, let's not let it go by the wayside.

Any ideas on how to approach this or any other methods?

Time for an update. It's been 4 months now and I'm still pain free.  Could it be the HRT?  Maybe.  That's the only real change I've made. 

Spring cycle - skipped!!!  Not even a shadow in months now.

1st time in years the beast has lost my address.

[smiley=shore.gif]

-Dennis-

DennisM1045 wrote on May 12^th, 2010 at 10:12pm:

Time for an update. It's been 4 months now and I'm still pain free.  Could it be the HRT?  Maybe.  That's the only real change I've made.  Spring cycle - skipped!!!  Not even a shadow in months now. 1st time in years the beast has lost my address. [smiley=shore.gif] -Dennis-

I am so happy for you Dennis.

Regardless of the source of your skipped cycle, you must be so happy to have the break from the "routine" we are all acustomed to. 

You already know what I think about HRT.

Best wishes for a long term and well deserved remission. (as if any of us did not deserve a remission)...anyhow...enjoy life!!!!!!!!!!!!

Cheers
Paul

When I started the preventive meds I am on now, I went 3 years without headaches.  It is a wonderful feeling, isn't it?!!!  Oh, how I wish it had lasted, but I sure enjoyed the break!!!  It makes me hopeful to have another one some day.  Good luck.

Whatever the reason, that's really great news, Dennis.  Sure hope it lasts!!

I am trying RC seeds right now but once I get my insurance back sometime in June I will DEFINTLEY get my hormone balance checked. I just read through all 9 pages of this post and thanks to all who have been  trying this.

David

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Try these guys. They might have something for you.

    Potter

This is very interesting and new to me. I was misdiagnosed for 39 yrs. and just found out about 3 weeks ago what this was. During the month before this last cycle began with actual attacks, my sexual desire dropped dramatically (no sex for a month) as well as during the cycle. outside of the cycle, there has never been a problem. infact it was more of the opposite. - I am responding fairly well to self treatment 9mg of melatonin every nite at 10pm

davidj35 wrote on May 24^th, 2010 at 12:57pm:

I am trying RC seeds right now but once I get my insurance back sometime in June I will DEFINTLEY get my hormone balance checked. I just read through all 9 pages of this post and thanks to all who have been  trying this. David

So did I!  I couldn't put this post down...even after taking my 8mg of melatonin.  I've enjoyed reading this 2 year, 9 page post.  Somehow I'd missed all the research regarding hormones.  May have been due to the fact that I am female and subconsciously thought "this couldn't apply to me, I'm not supposed to have testosterone" and blew off this whole area.  Many friends have suggested menopause may have been the trigger and as I read this I thought "man could I have been delaying a possible treatment just because of the way research papers structure their opening statement towards males?"

I think I'll take my laptop to my next gynecologist appointment!

Just a little personal update.

Still on HRT and still pain free.

Four years ago I was at my highest weight ever and morbidly obese. I feel that some part of the equation for me was my CH zapping my mental and physical energy and I tended to stay in the house in a very sedentary reclusive lifestyle... and food was a great comfort during those long long CH cycles.

Fast forward to today... with the help of HRT for the CH and a lot of effort on my part, I am now 101 pounds lighter than then and I am fortunate to have enlisted an excellent certified personal trainer to visit my home three times per week in order to bring back a level of fitness that has been unknow to me since clusters hit 30 years ago.

My three weekly sessions are based on this format...45 minutes of cardio on the treadmill at minimum 3.5 mph (up to 8 mph)and inclined between 3 to 8%... 50 minutes of plyometrics interspersed with core training and some free weights and kettlebells thrown in for interest sake....followed by 15 minutes of cardio warm down on the treadmill.

My diet has been drastically modified ( by a certified dietition)and I love the new foods, eat 5 times per day and do not miss most of the "bad" foods that I have pledged to never eat again.

I considered a before and after pic, but the before pics are really too gross for public viewing...I never even realized that I was that big, until my transformation took place.

Anyhow, I have a new life and I am making the most of it and as Doctor Oz might say, my biological age is most likey significantly lower than my chronological age, whereas before I started this my biological age was a ticking timebomb and many years advanced beyond my chronological age (and I really did not care...due to the CH...it messed up my thought process so much)

Anyhow, I hope everyone finds something to provide relief of these horrible CH and please try and keep your selves active as I was becoming plagued with health issues (age 51) until I took control...something I should have never have let get so far off track in the first place.

Take care


Paul

Wow Paul, what fantastic news. Your exercise regime sounds like mine only I can't afford a personal trainer LOL. I too have found being in better shape and eating better seems to help, at minimum with my self esteem. I am getting my insurance this week and I have a Dr's appointment set, however I am going out of cycle and I believe from what I have read that you really need to be in cycle for the hormone test to be accurate? Thanks for this thread it has been very informative.

David :) :)

davidj35 wrote on Jun 16^th, 2010 at 10:39am:

Wow Paul, what fantastic news. Your exercise regime sounds like mine only I can't afford a personal trainer LOL. I too have found being in better shape and eating better seems to help, at minimum with my self esteem. I am getting my insurance this week and I have a Dr's appointment set, however I am going out of cycle and I believe from what I have read that you really need to be in cycle for the hormone test to be accurate? Thanks for this thread it has been very informative. David :) :)

Thanks David.

Yes you will get the lowest testosterone levels when you are in cycle (if you are one of those that have hormone imbalance induced CH)...so it may be a bit of a gamble and if your results come in the mid normal range your doc may be hesitant to retest when you are in cycle in the future.

My tests fell 15 points when I went into cycle (putting me just below low normal)...but now with HRT I am above the high end of the normal range for a guy my age:)

I must caution that as you adjust to hormone treatment, there can be some personality changes, shorter fuse etc that the people around u will notice...this should be closely monitorred by the doctor and your family input should count as they see and experience what u may not notice as a change in yourself... when the correct dose is sorted out eveything should be the same old you...personality wise.


Paul

Thanks for the information Paul, as to the shorter fuse than I have already there will be no fuse  ;D.

Great news Paul!  Glad to hear from you again, and gladder still you are getting hold of life again!  CH sucks the life right out of you if you aren't careful, taking all purpose from it so that you don't want to do anything constructive other than what must be done to maintain life and livelihood.

your comment about the changes in T levels when in cycle or not are something I've been noticing although I'm chronic.  When getting hit hard and often my levels seem to be lower, but when the beast is just cruizing along at a lower level my numbers have been in the normal range.  You've helped confirm what I plan to discuss with my Dr next week.

I did not find hormone therapy made my mood all that much worse.  Perhaps because knowing it was a probability I worked harder at keeping it under control, but I also found after a few days on it and the resultant lessening of CH my mood actually improved.  Right now I'm using it on a sporadic basis, using only when getting hit hard.  It has never totally knocked mine out, just lessened them significantly, so when they are at the lower levels I don't use the hormone.  I just don't see the need for using it when it is not doing anything constructive for the HA's.

Hope you will continue posting periodically sharing your success.  There are a lot of newbies that need to know CH can be beaten.


Jerry
May your PF days never end!

Callico wrote on Jun 16^th, 2010 at 7:14pm:

Great news Paul!  Glad to hear from you again, and gladder still you are getting hold of life again!  CH sucks the life right out of you if you aren't careful, taking all purpose from it so that you don't want to do anything constructive other than what must be done to maintain life and livelihood. your comment about the changes in T levels when in cycle or not are something I've been noticing although I'm chronic.  When getting hit hard and often my levels seem to be lower, but when the beast is just cruizing along at a lower level my numbers have been in the normal range.  You've helped confirm what I plan to discuss with my Dr next week. I did not find hormone therapy made my mood all that much worse.  Perhaps because knowing it was a probability I worked harder at keeping it under control, but I also found after a few days on it and the resultant lessening of CH my mood actually improved.  Right now I'm using it on a sporadic basis, using only when getting hit hard.  It has never totally knocked mine out, just lessened them significantly, so when they are at the lower levels I don't use the hormone.  I just don't see the need for using it when it is not doing anything constructive for the HA's. Hope you will continue posting periodically sharing your success.  There are a lot of newbies that need to know CH can be beaten. Jerry May your PF days never end!

Thanks for your insights Jerry. I think after a few mood issues early on, I now have a more positive and upbeat attitude which may be because i am not currently suffering or perhaps the hormone has provided that extra energy boost both mentally and physically...i dont know.

Just a thought Jerry but if you only use when you are being hit hard you may talk to your doc about getting injections for a quick entry into the blood versus the gel which takes its time and can take a couple weeks to ramp up to max effectiveness (which varies from person to person as you have noted)...just a thought (and here in Canada I have heard the injections are cheaper).

Thanks for posting again Jerry and here is hoping you get the break you need and deserve.

Paul

still setting my personal remission records every day:)

p

I love it!  May it last forever!

Jerry

I have had my first 100 mg testosterone muscle injection last week and can report very positive results. I am chronic, have recently busted with alts and the additional HRT has brought my attack frequency and intensity down by at least another 30% (after only 1 shot).

Even if testosterone levels are within the normal range, I recommend giving it a try. I for one will continue. I have been prescribed 100 mg every two weeks. Does this dosage sound right?

MITYRARE wrote on Mar 20^th, 2010 at 9:24pm:

How does a researcher get intersted in this type of CH work and what is in it for them? Paul

From a personal perspective I can answer this one...
My son who is now 21 has suffered from migraines since the age of two and as you know I've suffered with CH for almost 11 years now.

My son has dealt with neurology issues all his life due to migraines and now me having CH has peeked his interest.  He is now majoring in Nuero-Biology and has been doing research for/with two of his professors for 2 years now.  My son has a personal interest and a very High curiosity level when it comes to Migraines and CH.   He plans on becoming a practicing NLP (neuro linguistics programmer) to earn some cash while he continues research and goes to Grad School.

Someday maybe he will be able to aid in getting Migraine and CH sufferers/survivors a cure or at least better preventatives or abortives.

That is great, Ginger!!!

Aw Thanks!  I have to say my son makes me proud every day.

hello all, just wanted to let you all know that I will be getting my blood drawn tomorrow morning for a testosterone level. I have read through all 10 pgs of this thread and was amazed.  I am extremely happy for the people it has helped break cycles, and in my case I am just going in and hoping for the best!  I will let you know my results.  Thanks again for posting and giving us all another possibility for relief.

Steve

neuropath wrote on Jul 4^th, 2010 at 3:28am:

I have had my first 100 mg testosterone muscle injection last week and can report very positive results. I am chronic, have recently busted with alts and the additional HRT has brought my attack frequency and intensity down by at least another 30% (after only 1 shot). Even if testosterone levels are within the normal range, I recommend giving it a try. I for one will continue. I have been prescribed 100 mg every two weeks. Does this dosage sound right?

excellent... thanks for posting your experience.

P

JustNotRight wrote on Jul 4^th, 2010 at 9:06am:

MITYRARE wrote on Mar 20th, 2010 at 9:24pm: How does a researcher get intersted in this type of CH work and what is in it for them? From a personal perspective I can answer this one... My son who is now 21 has suffered from migraines since the age of two and as you know I've suffered with CH for almost 11 years now. My son has dealt with neurology issues all his life due to migraines and now me having CH has peeked his interest.  He is now majoring in Nuero-Biology and has been doing research for/with two of his professors for 2 years now.  My son has a personal interest and a very High curiosity level when it comes to Migraines and CH.   He plans on becoming a practicing NLP (neuro linguistics programmer) to earn some cash while he continues research and goes to Grad School. Someday maybe he will be able to aid in getting Migraine and CH sufferers/survivors a cure or at least better preventatives or abortives.

It is doctors and researchers with a personal interest that are the ones that get things done..bravo!

You have every justification to be proud..our kids are our greatest asset and society only ever hears about the few bad ones.

I listen to doctor radio on satellite radio and the great specialists at NYU medical facility all seem to have had a personal experience that drew them to their specialty...best wishes for your son's continuing education in this field.

P

ps  I have emailed Dr radio to see if there could be a segment on clusters..stay tuned and I will report if it materializes.
P

plateglass wrote on Jul 6^th, 2010 at 7:55pm:

hello all, just wanted to let you all know that I will be getting my blood drawn tomorrow morning for a testosterone level. I have read through all 10 pgs of this thread and was amazed.  I am extremely happy for the people it has helped break cycles, and in my case I am just going in and hoping for the best!  I will let you know my results.  Thanks again for posting and giving us all another possibility for relief. Steve

Please keep us posted on your experience Steve...good luck!

I wondered is there connection between Testosterone imbalance, oxygen, hallucinogens, serotonine and heart-issues?

Got the results back today....Extremely low testosterone level.  Wow you guys were definitely on to something here.  My Nero would not prescribe me anything but I'm seeing a doc on Wed to hopefully start on the replacement therapy.  280- 800 is the normal level and I tested a 224!  I can't thank you guys enough.  I'll let you know how the therapy goes.  ;D

Steve

MITYRARE wrote on Jul 11^th, 2010 at 9:32pm:

JustNotRight wrote on Jul 4th, 2010 at 9:06am: MITYRARE wrote on Mar 20th, 2010 at 9:24pm: How does a researcher get intersted in this type of CH work and what is in it for them? From a personal perspective I can answer this one... My son who is now 21 has suffered from migraines since the age of two and as you know I've suffered with CH for almost 11 years now. My son has dealt with neurology issues all his life due to migraines and now me having CH has peeked his interest.  He is now majoring in Nuero-Biology and has been doing research for/with two of his professors for 2 years now.  My son has a personal interest and a very High curiosity level when it comes to Migraines and CH.   He plans on becoming a practicing NLP (neuro linguistics programmer) to earn some cash while he continues research and goes to Grad School. Someday maybe he will be able to aid in getting Migraine and CH sufferers/survivors a cure or at least better preventatives or abortives. It is doctors and researchers with a personal interest that are the ones that get things done..bravo! You have every justification to be proud..our kids are our greatest asset and society only ever hears about the few bad ones. I listen to doctor radio on satellite radio and the great specialists at NYU medical facility all seem to have had a personal experience that drew them to their specialty...best wishes for your son's continuing education in this field. P ps  I have emailed Dr radio to see if there could be a segment on clusters..stay tuned and I will report if it materializes. P

Thank you P!

You are right about the personal interest aspect...My current Neuro suffered with migraines as a child and the Neuro I'm hoping to get into see soon also suffers with migraines.  Personal interest wins out on both counts.   8-)

Just to let you all know, I started my testosterone replacement therapy 5 days ago.  The results have been astounding!! ;D  The very first day my headaches went down to 1, (from 3-4 a day)  and the intensity has been nothing compared to before.  I can not suggest enough for all to get the simple testosterone blood test to see where the levels are at.  This has been a Godsend to me and again I can not thank you all enough for bringing it up in this thread.  I will keep you all updated on my progress.

Steve

Hi

I'm new here and want to share my experience treating my CH without any midications. My testosterone was very low and I finaly figured out why. My magnesium and vitamin-D level was extremly low, so I started taking 500 mg magnesium citrate and 140 µg vitamin D as a daily dose. After 6 months my testosterone was back normal and my CH was gone. So I think my low testosterone was a result of low magnesium and vit D. I have been CH free for 2 years.  :)

Try goggle "magnesium testosterone".  ;)

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Haug

haug wrote on Aug 6^th, 2010 at 2:04pm:

Hi I'm new here and want to share my experience treating my CH without any midications. My testosterone was very low and I finaly figured out why. My magnesium and vitamin-D level was extremly low, so I started taking 500 mg magnesium citrate and 140 µg vitamin D as a daily dose. After 6 months my testosterone was back normal and my CH was gone. So I think my low testosterone was a result of low magnesium and vit D. I have been CH free for 2 years.  :) Try goggle "magnesium testosterone".  ;) START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Haug

Hello again with the vitamin D, Niels.   ::) 

George

Racer1_NC wrote on Dec 4^th, 2008 at 7:43pm:

Quote: The smart thing for me to do would be to call my neuro now, while I am out of cycle and ask him to order this for me.  He probably would , he's very open. Knowing him like I do, I'd say he'd do it no problem. Heck, I've had mine checked before as previously stated but I may have it done again...never know. Worst that can happen is he says "it's normal". B

Normal T levels do not necessarily mean that 'certain testosterone therapies' won't work for you.  Check out the article written by Dr. Todd Rozen a few years back that I have attached. 

Although there are no long term studies on it yet, I have been taking clomiphene citrate for two years now.  As a primary chronic, I went from an average 2 to 3 high kippers per day down to 1 or 2 very minor kippers per week. 

Oh, and I get my T levels checked every 6 months, along with a PSA and testicular exam.  To date, everything checks normal.

Lovin' Life,

alley

---

Oh please, niels.......you've got to be kidding ;D ;D

We never forget a face around here....

Quote:

We never forget a face around here....

  or a lot of other pertinent information either.   ;D

Damn.  It appears my vacation is over.  Hits have been building all week.  This is right in line with my fall cycle.  I'm very grateful for 8 months off.  My longest break in a very long time.

T-therapy has helped me in a lot of other ways so it wasn't a wasted effort.  I really do encourage every clusterhead to get they're level checked.

-Dennis-

Well that bites Dennis, sorry to hear it, wishing you a short go round.

Joe

Sorry to hear Dennis...perhaps a short break off the T and then a restart might help (just a wild ass hopefull guess).  I hope your revisit with CH remains short.


P

MITYRARE wrote on Aug 17^th, 2010 at 2:39pm:

Sorry to hear Dennis...perhaps a short break off the T and then a restart might help (just a wild ass hopefull guess).  I hope your revisit with CH remains short. P

You-n-me both.  I'm getting my ass handed to me so far. :-/

I'm gonna stick with the T threapy.  I don't see how stopping / starting could possible help anything.  But I appreciate you thinking out of the box.

-Dennis-

DennisM1045 wrote on Aug 17^th, 2010 at 3:59pm:

MITYRARE wrote on Aug 17th, 2010 at 2:39pm: Sorry to hear Dennis...perhaps a short break off the T and then a restart might help (just a wild ass hopefull guess).  I hope your revisit with CH remains short. P You-n-me both.  I'm getting my ass handed to me so far. :-/ I'm gonna stick with the T threapy.  I don't see how stopping / starting could possible help anything.  But I appreciate you thinking out of the box. -Dennis-

I know that it is a different drug, but not a different therapy.  I have been using clomiphene citrate for the last two years with unparalleled success (look at some of my earlier posts in this thread).  But I have had success stopping and restarting this drug a couple of times.  The first time I stopped for a couple of weeks when I wasn't getting the efficacy that I had been.  The second time (recently), I stopped for 6 weeks, but this time mostly to see how much increase in activity I would have.   Both times I seemed to get much better results after the break. 

I think that Paul's suggestion deserves consideration.

bobb

Ray of hope here  :-X

This is a bit long but bear with me.  And in the interest of complete disclosure, Andrea, my wife of 30 years,  bestest supporter and better half put it all together.

I've had a very busy summer.  But in a good way  8-)  My daughter Brigette is getting married in the fall (10/10/2010).  She didn't want a traditional wedding shower and opted instead for a hugh back yard cookout.  It turned into kind of a preview of the recieption.

All summer my work schedule has been nuts and I haven't had time to keep up with the yard work.  Let's just say my Honey-do list had gotten huge.

So with 70 guests arriving on 8/7 and the house/yard looking like a disaster area, I took the week before the party off to catch up.  This was 8/1 - 8/8.  I also started physical therapy for my back the same week.  Yea, I know  ::)

I was so busy sweating through all the gardening, mowing, painting, pruning, wood cutting and replacing a door that I was a tad inconsistent about applying the T-gel. 

One day it was normal but I might have sweated more than usual throughout the day.  The next day I might have forgotten completely.  You know how it goes.  Saturday comes, the party is a huge success and I'm drinking Sam Summer out of the barrel into Sunday afternoon.

On Tuesday (8/10), after a week of being inconsistent with the T-gel, my fall cycle starts up at 100MPH.  :o

However...

For the last two weeks+ since the party I've been real consistent again with the T-gel.  Starting yesterday I went from 3-4 hits a day to not even a shadow in the last 33 hours  8-)  

I know, I know, I could be up dancing again tonight.  I could get 3 hits again tomorrow.  I honestly don't know. 

But for right now ... after a completely pain free day ... I'm hopeful as a pimply faced kid on prom night  8-)

-Dennis-

Wow, that's alot of yard work!  No wonder you forgot a few apps.  Keep us updated with your results.  Congrats to your daughter and you!  :)  I'm wishing ya PFD&N. 

Steve

That's great news Dennis, having recently done the "wed the daughter off"...not too hard to get carried away and forget the nuts and bolts of life!!! ;)

Joe

Dennis,

I hope this works out.

As i have posted many times, the hormone therapy seems to "hide" the CH and they run just below the surface of the pain perceptability and make us feel "healed"...

....i would agree that sweating the gel off before the "5 hour soak in" period could be a problem and missing a dose is an invitiation to trouble as the testosterone levels must remain as consistent as possible to be effective...that is why many that tried needles found relief sporatic as their levels were getting boosted and dropped off quickly allowing the CH to break through.

I hope your lifestyle gets back to normal soon and I trust you will report both positive and negative experiences with the hormone therapy.

Take care


Paul

MITYRARE wrote on Aug 30^th, 2010 at 5:25pm:

As i have posted many times, the hormone therapy seems to "hide" the CH and they run just below the surface of the pain perceptability and make us feel "healed"...

This is exactly how I'm thinking about it now.  The CH is still there but the "normal" Testerone levels are keeping the attacks at bay.  My inconsistency in applications caused the beast to "wake up" at peak cycle.

Until this most recent experience I was honestly still skeptical about wether HRT was really helping with my CH.  I am now a believer.

So I'm being as consistent as I can be.  The only days that apps vary are PT days.  I don't like to put it on before therapy.  They make me sweat and there is no need to expose the therapist who is working on my back.  So I make all the appointments for 8am.  This makes the app roughly 2 hours later days a week. 


Quote:

I trust you will report both positive and negative experiences with the hormone therapy.

You can count on it ;)  This is the only way we learn.

At this point things are still well in hand.  Had an attack Saturday night and another this morning.  Neither were over the top and were easily dispatched with O2.  Some shadows come and go most days.  This is a far cry from the 3-4 hits a day I was getting.  I'm still carrying my tanks everywhere.

-Dennis-

I LOVE it when things come together for one of us.  I'm so glad for you guys!  It hasn't worked quite that well for me, but I'm happy with about a 50 percent decrease in hits and about the same in intensity.  Recently I bumped up my Kudzu by a third, and I've gone a month now without hitting the oxygen and over two weeks with only one 5hr Energy.  Been doing the happy dance for sure!  Keep it up guys.  You give us hope.

Jerry

Yay for you all!!!  Good to hear!

I'm still headache free!!


Paul

And that sir...is a beautiful thing!!!

Joe

As Lawrence Welk used to say, "Wunnerful, Wunnerful, Wunnerful"!  May it never end!

Jerry

I started on the testosterone replacement gel around 3.5 weeks ago. It does seem to be helping with the CH some. Time will tell if it's really that...or just time for my high cycle to calm down.

One thing I am convinced of.....it takes several different approaches to keep it beat down....at least for me. Those that know me know what I do to keep the beast at bay. Mix and match people.......complete the puzzle.

Racer1_NC wrote on Oct 7^th, 2010 at 1:46pm:

I started on the testosterone replacement gel around 3.5 weeks ago. It does seem to be helping with the CH some. Time will tell if it's really that...or just time for my high cycle to calm down. One thing I am convinced of.....it takes several different approaches to keep it beat down....at least for me. Those that know me know what I do to keep the beast at bay. Mix and match people.......complete the puzzle.

Two words for one more approach: clomiphene citrate

Interesting......more reading is in order.... Thanks...

Let me know, and I can send you a copy of Dr. Rozen's article in Headache about using clomiphene citrate for CCH.

Hi alley,

Please send me the link to Dr. Rozen's article too, if you will. I can't find it on the net except in a pay-for form. Thanks. Ron

I'm so happy that some of you really did pay attention to this thread, did some research, found some answers. 

My fellow ch affected people on this board were ticked off by my insisting that someone listen.....for 9 years I kept pushing this issue and finally one day, Paul came along and tried it. 

Every time I come back here to see if this thread is still up, and it is, it just makes my heart sing.  Thank you Paul for taking the lead in this and all of the leg work, research, follow up, etc.  You and Dennis have given others hope in finding some kind of relief from this horrible pain.

I have been free of ch pain since 1987...completely pf, and I hope and pray that at least a few more of you will find the same relief.

lyg's and gals,
Donna Har

Hi Donna!  Miss you around here!

I'm glad you kept pushing this.  It hasn't worked as well for me as for Paul and Dennis, but I'll take a 50% reduction and smile!

Glad you are still PF. Hope the remission never ends.

Jerry

So long as I'm a good boy and faithful with my applications, life is pretty darn close to PF. 

I can't thank you enough Donna for being the stubborn SOB we all love. 

Donna, if you hadn't posted this thread and if Paul hadn't followed up on it I would never have had my levels tested.  And I wouldn't have found significant relief from these terrible cycles of pain.

-Dennis-

Donna you are my hero. You championed this research and treament long before I found this forum...and I am so grateful for everyone that freely offers their experiences with alternative treatments.

Everyone is different, and the management of these things require experimentation.

My life has been changed.

Before testosterone I was unmotivated and less than happy during my cycles, over ate in between hits, and struggled to provide my family with a normal daily life.

Today i ended a record setting profitable work season, I am 100 pounds less than 4 years ago, I walked 8.5 miles today in less than two and half hours whistling as I enjoyed the lake and natural surroundings which are far more inspiring than suffering in my bedroom, and I spent time online sharing good news with my grown children, and i played with the dog...all normal stuff that often suffered during CH cycles.

Life is good.

Thanks Donna.

Paul

Paul,

I hope you feel better soon!   ;D

I'm so glad for you.

Jerry

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Hello all, just checking in with an update on the replacement therapy.  I was on 1 tube of Testim a day and my levels went up slightly, but not into the normal range. So the doc put me on 2 tubes a day, 6 wks later we find out that the levels went even lower than before :-?  Has anyone else had this issue?  We are going to test again in 6 wks, if it don't go up by then he suggested injections. 

Thanks
Steve

Hi Steve,

Here are the rules I follow:
o Take a hot shower and thoroughly drying skin.  This gets the pours open.
o Apply to upper back, shoulders and chest
o Rub it into your skin until the Gel feels tacky
o Allow Gel to dry completely before putting on a shirt. 10-15 minutes.
o Don't work out or do anything else that would cause you to sweat heavily for at least five hours after putting it on.

Beyond application consistency there is the option of trying the other Gel on the market.  T-Gel.  This is the one I use.  Though most here seem to use Testim.  My Dr has seen results vary from paitient to patient with the two products.  If one doesn't work he'll try the other.

The thing my Dr didn't like about injections was the sawtooth pattern that is seen in the level over the course of time.  Your T level spikes right after the shot and then tappers off rapidly until the next shot.

The advantage of the Gel is that it gives your a much smoother T level over time.

I hope you find a simple fix.  Good luck...

-Dennis-

Thanks Dennis, I will try changing the timing of the shower, and waiting a little longer to put on the shirt.  The injections would be a last resort, (ie:changing to Tgel)  and what you say about the peaks and valleys does make alot of sense.  I'll be keeping you posted.

Steve

Good luck steve.


I use Androgel and it absorbs and dries very quickly on my dry skin.

There are also time released testosterone pellets available.


paul

I'm like Paul with Androgel.  However, I use most of mine on my belly and use the excess on my arms and shoulders or thighs.  Like Dennis I try to do mine right after I shower.  I also try very hard not to work hard enough to sweat it off! ;D

Jerry

Hi guys, new to the site but long time sufferer of CH (going on 12 years). I think I may have something interesting to add to this discussion...

I am a user of anabolic steroids, and have been on and off since my early twenties (I am 33 now). I am in the middle of a 12 week cycle of anabolic steroids and have been suffering another cycle of CH for the last 3 months or so.

The dosage and types of steroids I am taking are as follows:

- T400, injectable, dosage: 500mg/week. T400 is a blend of 188mg/mL of Testosterone Cypionate, 187 mg/mL of Testosterone Enanthate, and 25 mg/mL of Testosterone Propionate.

- Anavar (oxandrolone), orally administered, dosage: 30mg/day

While this still obviously creates a testosterone imbalance in my system, it is not a shortage but an excess.

Unfortunately I can tell you that the test does absolutely nothing to help with my headaches. The CH cycle I am in now has been particularly long and painful. I am currently taking 450 mg/day of Verapmil and it's effect is waning by the day/week. I am considering further increasing the Verapmil dosage myself out of desperation, mostly due to sleep deprivation; however, last time (last cycle, last year) I went to 3x 180 Verap pills a day I started to develop irregular heartbeats and I got the feeling my body was warning me to back off.

These things are killin me though. I am an engineer at a refinery and a shift worker. My job requires me to be at the top of my game at all times, and sleep deprivation does not play well into that. Most "nights" sleep occur in a series of 1 to 1.5 hour shifts as I am repeatedly awoken with an all too familiar dull throbbing in my head that quickly escalates into the unimaginable agony I'm sure you are all aware of.

Anyhow, glad to be here. If you have any questions regarding my steroid usage or anything else for that matter feel free to ask.  :-/

Hi Kurtz,

I'm not sure that the injectable / oral combo has been shown to be effective for CH.  So I guess it doesn't surprise me that you would see no benefit.

Someone correct me if I'm wrong here.

The reason gel works (as it was explained to me) is because of the sustained testosterone levels over time.  Injections done weekly provide a spike followed by a fast decay.

Also, like every other CH therapy, HRT dosen't help everyone.

Verapamil:

Have you had an EKG done?  If you are on Verapamil you should have one annually.  CH won't kill you but heart rythm issues can and this is one of the listed side effects of Verapamil.  The good news is that stopping the Verapamil seems to reverse the effects.

IMO it is never advisable to be
Quote:

increasing the Verapmil dosage myself out of desperation

Using the immediate release formulation instead of the sustained release formulation can really make a difference.  It did for me anyway.  Search around for the info posted by Bob Johnson on Verapamil.

I hope you find something that works soon.

-Dennis-

Kurtz wrote on Oct 26^th, 2010 at 12:53pm:

Hi guys, new to the site but long time sufferer of CH (going on 12 years). I think I may have something interesting to add to this discussion... I am a user of anabolic steroids, and have been on and off since my early twenties (I am 33 now). I am in the middle of a 12 week cycle of anabolic steroids and have been suffering another cycle of CH for the last 3 months or so. The dosage and types of steroids I am taking are as follows: - T400, injectable, dosage: 500mg/week. T400 is a blend of 188mg/mL of Testosterone Cypionate, 187 mg/mL of Testosterone Enanthate, and 25 mg/mL of Testosterone Propionate. - Anavar (oxandrolone), orally administered, dosage: 30mg/day While this still obviously creates a testosterone imbalance in my system, it is not a shortage but an excess. Unfortunately I can tell you that the test does absolutely nothing to help with my headaches. The CH cycle I am in now has been particularly long and painful. I am currently taking 450 mg/day of Verapmil and it's effect is waning by the day/week. I am considering further increasing the Verapmil dosage myself out of desperation, mostly due to sleep deprivation; however, last time (last cycle, last year) I went to 3x 180 Verap pills a day I started to develop irregular heartbeats and I got the feeling my body was warning me to back off. These things are killin me though. I am an engineer at a refinery and a shift worker. My job requires me to be at the top of my game at all times, and sleep deprivation does not play well into that. Most "nights" sleep occur in a series of 1 to 1.5 hour shifts as I am repeatedly awoken with an all too familiar dull throbbing in my head that quickly escalates into the unimaginable agony I'm sure you are all aware of. Anyhow, glad to be here. If you have any questions regarding my steroid usage or anything else for that matter feel free to ask.  :-/

Kurtz,

So based on your post you have been dealing with CH ever since you started manipulating your hormones. Did you ever think of it that way?

Body building consumes large amounts of testosterone to build muscle mass...perhaps all your natural hormone plus the injected T is being used to build mass and there is not enough in consistent even quantities to keep the pituitary and hypothalamous happy....just a thought for consideration.


Paul

MITYRARE wrote on Oct 26^th, 2010 at 6:37pm:

Kurtz wrote on Oct 26th, 2010 at 12:53pm: Hi guys, new to the site but long time sufferer of CH (going on 12 years). I think I may have something interesting to add to this discussion... I am a user of anabolic steroids, and have been on and off since my early twenties (I am 33 now). I am in the middle of a 12 week cycle of anabolic steroids and have been suffering another cycle of CH for the last 3 months or so. The dosage and types of steroids I am taking are as follows: - T400, injectable, dosage: 500mg/week. T400 is a blend of 188mg/mL of Testosterone Cypionate, 187 mg/mL of Testosterone Enanthate, and 25 mg/mL of Testosterone Propionate. - Anavar (oxandrolone), orally administered, dosage: 30mg/day While this still obviously creates a testosterone imbalance in my system, it is not a shortage but an excess. Unfortunately I can tell you that the test does absolutely nothing to help with my headaches. The CH cycle I am in now has been particularly long and painful. I am currently taking 450 mg/day of Verapmil and it's effect is waning by the day/week. I am considering further increasing the Verapmil dosage myself out of desperation, mostly due to sleep deprivation; however, last time (last cycle, last year) I went to 3x 180 Verap pills a day I started to develop irregular heartbeats and I got the feeling my body was warning me to back off. These things are killin me though. I am an engineer at a refinery and a shift worker. My job requires me to be at the top of my game at all times, and sleep deprivation does not play well into that. Most "nights" sleep occur in a series of 1 to 1.5 hour shifts as I am repeatedly awoken with an all too familiar dull throbbing in my head that quickly escalates into the unimaginable agony I'm sure you are all aware of. Anyhow, glad to be here. If you have any questions regarding my steroid usage or anything else for that matter feel free to ask.  :-/ Kurtz, So based on your post you have been dealing with CH ever since you started manipulating your hormones. Did you ever think of it that way? Body building consumes large amounts of testosterone to build muscle mass...perhaps all your natural hormone plus the injected T is being used to build mass and there is not enough in consistent even quantities to keep the pituitary and hypothalamous happy....just a thought for consideration. Paul

As far as my anabolic steroid usage being responsible for exposing me to CH, it is simply not a possibility as I did not begin using steroids until one year following to a cluster attack. I remember this very clearly, as when I started taking the steroids my thinking was to give my body an enhanced regenerative state in an attempt to compensate for a lack of sleep - which began to impact my workout schedule. I felt like crap all the time and my friends who were all users at the time convinced me to try a cycle to see if it helped.

As far as the test "spiking", while to some small degree this is true, the "spikes" you would find are very small. There is 2 reasons for this. First of all, T400 is a blend of 3 different types of Test, as noted. This cocktail if you will, is a blend of medium and long-estered test molecules. The length of the ester determines the amount of time a compound will remain active in your system, as the longer estered test takes longer to process, while the shorter esters are used up quicker.

Also, I administer one half mL shot every three days, so the test levels in my system remain high, and constant. Having wildly fluctuating levels of test in your system would wreck havok on a serious bodybuilding program.

As an added note, these steroids are supplied to me and their administration regulated by a professional bodybuilder/fitness trainer who also holds a degree in biochemistry. I have known him since my youth and trust his knowledge on the matter of steroid usage much more than I ever would the word of my doctor even. This man has built a living around steroids and their effects on the human body.

I know a lot of people are holding onto hope that test replacement is a possible cure, and it is by no means my intent to disappoint anyone. It should be noted that what I do to my body is by no means a scientific study and I myself am no expert on this subject. Don't discount this treatment based on my words, rather I hope within there is information to somehow help in this important research.

The sooner we can beat this thing the better. Hopefully it's sooner cuz lately I think I am losing my mind. I can't think of a more terrible thing one could suffer though.

Quote:

Kurtz, So based on your post you have been dealing with CH ever since you started manipulating your hormones. Did you ever think of it that way? Body building consumes large amounts of testosterone to build muscle mass...perhaps all your natural hormone plus the injected T is being used to build mass and there is not enough in consistent even quantities to keep the pituitary and hypothalamous happy....just a thought for consideration.

I think you are mistaken regarding the function of testosterone in the body. It is a hormone, responsible for the regulation of a great many things such as sex drive, protein synthesis etc. It is not "consumed" by bodybuilding or anything else for that matter, rather its levels naturally fall due to mechanisms such as aromatization to estrogen etc.

Kurtz,

You said you have probs with Verap if you go any higher.  Please don't increase it without working closely with a Dr.  The side effects, plus the lowering of the blood pressure are not something to be done on your own. 

since you are having issues with Verap let me suggest one of two things.  Talk with your Dr about adding Lithium to the Verap.  Many get relief in this manner.  The second would be to try Kudzu.  If you look in the Meds and Treatment page you will find numerous mentions of it.  I've posted a number of times about it, but if you will go back into the archives and do a search you will find a long thread, almost as long as this one, concerning Kudzu.  Nani is the one who started that post, and you will find a great deal of info there.  That is when i started after having been on Verap and Lithium, but having difficulties with the side effects.  I've gotten as good of results with Kudzu as I did with the combo and without side problems.

Jerry

Just to keep all updated, I was getting 3-4 ha's per night. The T gel knocked out all the daytime hits.   I was prescribed Clomiphene citrate @ 50 mgs per day.  It has been 10 days since I started and to my amazement  :o  I haven't gotten ANY ha's...(knock on a friggin redwood!!)  Thanks again to AlleyOop for the information on the medication and well wishes!  Again I will keep you all updated.   :)

plateglass wrote on Nov 4^th, 2010 at 6:10pm:

Just to keep all updated, I was getting 3-4 ha's per night. The T gel knocked out all the daytime hits.   I was prescribed Clomiphene citrate @ 50 mgs per day.  It has been 10 days since I started and to my amazement  :o  I haven't gotten ANY ha's...(knock on a friggin redwood!!)  Thanks again to AlleyOop for the information on the medication and well wishes!  Again I will keep you all updated.   :)

I love it!  [smiley=thumbsup.gif]

Just to keep the update rolling I have great news.  It's been about a month on the Clomiphene Citrate and I have not gotten any ha's or shadows... :) The testosterone test came back and I'm off the charts at around 900!  up from 270 ish.  This stuff really works to trigger the testosterone boost and keep away or actually end the cycle.  OOh yeah I almost forgot I haven't used the T-gel in 10 days!  More people should give this a look, it has worked wonders for me.  Tks again Allyoop.

Lord knows we love hearing success stories like this. Doesn't work for everyone but sure worth getting tested. [smiley=thumbup.gif]


Joe

You're most welcome Bro!

And you are right -- more should give this a look!  Clomiphene gave me my life back.  It's been over two years now since I started on it, and I'm not looking back.  :)

Okay, I just went to the end of the post and hope your not too irrated that I might be asking question that have been already answered. 

Did you get any kind of test that showed low testostrone?  Can I get the report that you offered someone else earlier on in the post?

My son has never had any blood test, we are seeing a new doctor and I would like to see this and show it to the new doctor.

I posted the entire article by Dr. Rozen several pages back in this thread.  I think I did it in two separate posts. 

If you want to pm me with your email address, I will be glad to send the article as an attachment.

Best,
bobb

thanks all.. I am not looking back either Bob.  Here is the report on Clomiphene Citrate that opened my eyes. 

Steve

---

Thanks Steve for posting the attachment. 

I must have had a brain fart.  :P

No problem, and as for Ericsparents.  I had a testosterone test done by my neuroligist.  It is a simple blood test which indicated low Testosterone while I am in cycle.  As of now I am not sure if the headaches cause the low T or the other way around, all I know is for me it is connected and this medication has completley ended my pain.  Any questions just ask. 
Steve ;D

Way kewl!!!

Happy Thanksgiving Steve! :)

We may have to retitle this thread from "why don't we pay attention to this?"....

to

"Nice to see so many having success with this!"


I will have an update on my ch in a couple weeks.

stay tuned.


Paul

I agree Paul, I am anxiously awaiting your update, I hope all is well with you. 

Steve ;)

I hesitate to write this as it offers no solution.However i am almost certain that this pain has to do with both hormones and the liver.unfortunately the meds present a vicious circle as they dont help the liver but i cannot live without them.In Holland it is scientifically proven that at least in women the ch sufferers decrease by 90% after menopause.That screams hormones.I believe for some the shrooms work as there are more than one cause to this monster.The shrooms wake up a part of us that we seem to have repressed  or buried but for many of us that is not enough.There is the factor of anger in us that plays a significant role as well ,in my 14 yrs experience of daily confrontation of repeated hits with this monster.Being a female I totally agree we should check our hormone levels and our diet and our mind and our heart.For I believe or should I say in my experience, it seems to me they all play a role . Plus checking the parasite and candida levels in the intestines.
May we all beat the beast one day
Until then lets keep trying!!!!
We will overcome ,I pray!

OK...I've got an appt. for Eric Thursday.  I gave the neurologist the document that is attached on this thread about Clomiphene Citrate and low testosterone.  I going to ask for a blood test (more like demand it). 

Question though, what is the normal range for testosterone.

Also got a dr. appt. with another dr. for a second opinion. 

LONG UPDATE

This coming Sunday will be two years since i began HRT for clusters... and my clusters ended on Dec 30 2008 (after 30 years of clock-like regularity).

Since then I have had a total of 4 singular clusters come randomly...no explanation other than perhaps ineffective absorption of Androgel due to sweating it off before complete absorption.

I always know when I am in cycle as I do get very faint/distant shadows...nothing enough to impair me in any way...very faint. 

I have been able to precipitate a cluster shadow using my traditional triggers (colognes, gasoline fumes etc) whenever in cycle and for some strange reason i seem to want to verify my cycles this way...so the CH are not gone but are just deeply buried by the hormone.

This past week I spoke to my doctor about Clomophene Citrate and he agrees that it will cause testosterone levels to spike in men (thats why weightlifters use it). 

HOWEVER, he cautioned that he would rather I stay the course with Androgel as it works (for me) and has decades of use under its belt versus Clomiphene Citrate which has scant history of long term use documented to date in men.

My doc took the copy of the report I printed off (thanks Alleyoop) and will see if any clinical trials or research is being done here in Canada that would indicate a preference over Androgel for long term use.

No doubt that with long term Androgel there is some atrophy of the testes, but reports of reduced ejaculate and other sexual disfunctions have been unfounded by my experience. My sex drive has not changed either (always has been strong) although a friend that is also using HRT for CH has said his poor sex drive has improved significantly with HRT.

I continue to have regular prostrate tests including PSA so that should something change, the HRT would have to be stopped...the same would be true of Clomiphene Citrate.

If HRT proves only partially successful but not completely for you, then I would most certainly campaign your doc to try the Clomiphene.

My experience has been great...but I never take one day for granted as we all know how the beast can often find a way to get around successful treatments over time.

Hopefully this hormone connection can provide docs with the key to sorting out the cause of these headaches and find a therapy that will be effective in all cases.

.... it may seem like a dream, but i can assure you I am living one right now and I am living it to the fullest every day.

Be vigilant and try everything at your disposal so that you can get your share of pain free days.

Best wishes to all.

Paul

Paul,

You have no idea how happy that report makes me!  May it never end!

Jerry

Callico wrote on Dec 7^th, 2010 at 10:14pm:

Paul, You have no idea how happy that report makes me!  May it never end! Jerry

Thanks Jerry



Paul

We just got Eric on Clomiphene citrate.  PLEASE, PLEASE, PLEASE let it work.

I have my fingers crossed for Eric and his parents.

Wouldn't that be the greatest Christmas present ever.



Paul

Thanks, I'll keep you updated.

sorry I havent been around in a while.  Glad to report NO ha's since my last update.  My doc is having me cut the clomiphene tabs in half now.  My test level was over 900 with no gel and just the clomiphene.  Erics parents... I have my fingers crossed for you and your son.

Steve

Thanks for the update Steve, and glad you are still PF.  Please keep us posted on how the 25mg doses go.

Bobb

plateglass wrote on Dec 15^th, 2010 at 5:31pm:

sorry I havent been around in a while.  Glad to report NO ha's since my last update.  My doc is having me cut the clomiphene tabs in half now.  My test level was over 900 with no gel and just the clomiphene.  Erics parents... I have my fingers crossed for you and your son. Steve

Excellent news Steve.



Paul

Really glad to hear it Steve.  Hope it lasts forever.

Jerry

Thanks all I hope it lasts forever too.  As of now this Clomiphene Citrate is the best medication I've ever taken.  Not even one shadow!!  Thanks again all.   ;D

Steve

Hey Alleyoop - I just noticed your from PTC.  We are in Senoia.  What Dr. do you use?  We just went to see a Dr. in PTC for a 2nd opinion and she told me that my Expectations were to high and asked me what I expect her to do.....I was SOOOOOOOO mad.

Anyway, I don't know if the Cholmid is working.  It seems he was getting CH but he was able to abort them easier.  Until the last couple of days.  The only thing that I know has been working has been the Melentonin that he was taking; 9 mg. of reg. and 3 mg. of Time released (2 staged).  This had taken away ALL of his night time hits, which in turn made less day time hits, and not as hard.

Well, he ran out of time released so we got another brand but it was 5mg and it was just time released.  The first night on the new melantonin he got a hit at 8am the next day, took O2 and it went away for the rest of the day.  The next day he got a MAJOR hit at 6am and he look horrible for the rest of the day and got more hits.  He was afraid to fall asleep but some times he would lay his head back and he was instantly asleep.  But the weird and scary thing is that the time he was asleep his eyes lids would flutter constantly and his eyes would roll back in his head.

I went instantly to get the stuff I usually use and he was able to sleep through the night without a hit but because of the day before, he was not 100%.  Well see how tonight is?

The one thing I have not posted is that Eric is a wrestler, a really good wrestler.  He has worked all summer to have a great year.  It has been his choice to try and work through this but I don't see his wrestling career to continue, which is very very sad.  He was good enough to have a chance for a scholarship by the time he graduated.  His dad and I have told him that we are ok if he can't do it anymore and that he should continue just so he won't disappoint us. He's still  having a tough time with this.  With all my heart, I wished I could be the one to get the CHs and not him. 

Well glad to hear that at least the melatonin has been working for Eric.

Winning a battle on one front like that makes it sound like things are moving in the right direction anyway, and that a more comprehensive victory could be achievable in 2011.

Hi,

It's almost a year now since I started HRT with TGel (1/21/2009).  This has easily been the most pain free year of the last 15.  I am very grateful and try to make the most out of every PF moment.

I went to my Urologist today for another PSA screening.  He has become increasingly concerned with the velocity of my PSA #s.  They've gone from a 1.5 to a 2.5 and no up to a 3.5 since starting HRT.  Based on the rate of change he wants me to have a prostate biopsy.  The procedure is scheduled for 2/1.

There is no family history of prostate cancer in the family and I'm only 50.  My Father also had an elevated PSA.  He had a biopsy done which was negative.  Though he was at least 15 years older than I am at the time.

I believe that my PSA was artificially low because of my initially very low Testosterone levels (116 then, now 375).  So I'm not overly worried and will report back when I get results.

Why am I telling you this?  Because there may be another clusterhead going through the same thing now or will in the future. 

I have to admit that the thoughts of losing my magic bullet are all I'm really worried about at the moment.  But, if I do then at least I'll have had a great year off from CH.

-Dennis-

Praying it comes back normal.

Jerry

Thanks so much for posting this Dennis!

Although our therapies are different (clomiphene citrate vs TGel), they are also very similar.  Since starting with the clomiphene some two and a half years ago, I have been having my PSA checked semi-annually.  So far, so good.

Wishing you a negative biopsy...

Bob

Bob,

If you don't mind my asking ...

Did your PSA bump up at the beginning of your therapy? 
How consistent has it been over time?
How many points did you recover on your Testosterone level overall.

-Dennis-

Dennis,

Let me request my past results from my GP and neuro, and I will get back to you.

Bob

No worries Bob.  I was just curious if you knew.

Thanks...

-Dennis-

Dennis, I'm glad you have had a "better" year recently and also that you are monitorring PSA.

I am hoping it is just an adjustment to the therapy and my best wishes are with you.

You bring up a good point regarding PSA and I know I have had mine checked a few times over the past two years and my doc says eveything is OK but I have never asked for the numbers to track any change myself...so i don't know if I did change and it was  still within the "normal" range or whether mine have remained the same. I will ask for my numbers at my next visit.

I too have wondered at what point the rug will pulled out from under me with the HRT as the past two years have been a "gift" to me.

I do hope you share your experience with the psa followup with us either here or through pms especially for those of us in the same Testosterone boat (which includes synthetic testosterone or natural induced by Clomiphene)

Thanks for posting Dennis.

Paul

Count on it paul ;)

If it's just a normal outcome of the body adjusting to normal Testerone levels and I can help another clusterhead avoid the stress of "not knowing" that I'm going through now, I'll be happy to do it.

On the other hand if it turns out that there is something to be concerned about, I'll be very thankful that I turned to HRT and uncovered it as early as possible.  Without the close monitoring over the last year, it might have gone undetected for quite a while.

I've been doing more reading on "PSA velocity" and why it concerns Drs.  Scary stuff.  Any jump of than 2 points or greater in the year preceeding diagnosis of prostate cancer is a bad sign for 3 year survivability.

Still hoping this is all just my body adjusting...

-Dennis-

I don't want to hi-jack the thread but I wanted to add this.

Doctors used to use "as long as it is below a 4.0, it falls under the normal umbrella. They now say that it is more important to be watching if it is rising each year.

For me, mine went from a 1.5 to a 2.5 to a 3. My urologist did a biopsy and discovered prostate cancer. My psa would have still been considered normal under the old criteria.

So, yes us guys need to be checking the rise in numbers even if they are still small numbers, especially if you are taking testosterone treatments.

Jimi,
Thanks for that input.  and Dennis thanks for the information.  I am getting my levels checked now, both bits of info will help in my case, and I am sure others situations as well.  Ohh yeah by the way ... not one headache yet.  Still goin strong.

Steve

Thank you all so much for sharing your info. My first post, my hubby has suffered CH for about 12 yrs now. He tends to go about 2 yrs inbetween his 2-3 wk cycles. He is getting hit again hard now and I started to research again (though didn't find much helper info in the past, i just cant bear to see him in so much pain and feel so helpless) I am soooooooooo thankful to have found this site! I have already gleaned so much on how to be a better supporter and how to be a better advocate for him. I am eternally grateful. Even just talking to him in the "lingo" I have learned here makes such a great difference. Him knowing he is not alone and there is hope and help. No more grasping at straws.(At least we will be grasping at better straws)after reading other post and info, I went out at 2 am night before last and got him four extra ice packs, 2 bottles of melatonin and as much redbull as i could find. next night he actually slept all night (the previous nights he was dancing at 9/10k with with maybe some 2/4 occasionally through the days and always shadows) today was the first day in weeks that I saw him WITHOUT an icepack tucked under his shirt! He has been so afraid of getting a CH he hardly ever goes with out one. Even sleeps with them during his cycle. God bless you all. I am off to study more about the meds. Just found this thread too interesting to put down!

Praying PFD&nights for all of you.
sorry if I rambled....

Hi Dereksgirl!
Welcome to this great place and the caring people within...
He is SO Lucky to have someone like you in his corner, fighting for him!  ;)

It amazes me still about the number of people here that have had CH for 10-20 years even, and have only recently been diagnosed correctly!
I am sure this Forum is and will be, a Major force in getting the Medical world more 'clued up' on this terrible, life-altering problem.

With your research here, you have fast tracked his recovery and eased his suffering!
Well done to you!

Best Wishes

Gary

Prayers going out to you Dennis for a good outcome.  Jimi, I hope you are well too.  Good luck to all others going through something similar and thanks for sharing your experiences.  I'm sure you know you are helping others by doing so.

Welcome Dereksgirl!  I'm a supporter too and as you've learned there is so much great information here.  I know that helpless feeling of watching your loved one suffer.  You've taken the right steps by coming here.  Definitely read up on the O2 and ask away.  The people here are wonderful.   ;)

Thank you and I will!
Praying for all of you and picking up my oar to row alongside you...

dereksgirl wrote on Jan 30^th, 2011 at 3:22pm:

Praying for all of you and picking up my oar to row alongside you...

That is THE sweetest thing I have heard recently!

Many Thanks

Gary

Thinking of you, Dennis!

Biopsy yesterday.  Results in a week.  Fingers crossed ;)

Thanks everyone...

-Dennis-

We'll be praying for you Dennis...keep us posted.

Joe

Yes Dennis.....keep me posted.

DennisM1045 wrote on Feb 2^nd, 2011 at 5:24pm:

Biopsy yesterday.  Results in a week.  Fingers crossed ;) Thanks everyone...

Hoping all best for you, Den. 

I've waited out four of them.

The newer biopsy is a more thorough 48 sample all at once, which they put you under for I hear, has been recommended as another follow up.  It saves multiple incursions if they think maybe they missed it with previous samples through time of 10, 12, 12, and 14.  With a prolonged PSA over 9, still negative somehow.

Not a comfy procedure.  Yer a touch sore and seeing blood, both ways.    

Kevin_M wrote on Feb 3^rd, 2011 at 7:55am:

DennisM1045 wrote on Feb 2nd, 2011 at 5:24pm: Biopsy yesterday.  Results in a week.  Fingers crossed ;) Thanks everyone... Hoping all best for you, Den.  I've waited out four of them. The newer biopsy is a more thorough 48 sample all at once, which they put you under for I hear, has been recommended as another follow up.  It saves multiple incursions if they think maybe they missed it with previous samples through time of 10, 12, 12, and 14.  With a prolonged PSA over 9, still negative somehow.

I hope you are negative forever.


Quote:

Not a comfy procedure.  Yer a touch sore and seeing blood, both ways.

Yea, they're not too forthcoming with that info before you have the procedure...

48 samples?  They'd have to knock me out.  12 was painful enough.

-Dennis-

Dr's office just called. They got the results back early. 

NO CANCER!

I can continue my HRT and follow up with him in 6 months.

Everyone here is very relieved. Thank you all for the vibes and juju...

-Dennis-

Another prayer answered with a resounding "YES". Great news Dennis. [smiley=hug.gif]

Joe

Great news...happy for you!   [smiley=sayyes.gif] [smiley=thumb.gif]

Great new Dennis. I bet you're over the moon.

Excellent news!







paul

FANTASTIC NEWS!!!

Thats what we were hoping to hear. :)

Good deal, Dennis.