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WHY don't we pay attention to this? (Read 94601 times)
DonnaH_again
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WHY don't we pay attention to this?
Dec 2nd, 2008 at 9:08am
 
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:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

There are others:  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

And this:

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

"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: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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  

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MITYRARE
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Re: WHY don't we pay attention to this?
Reply #1 - Dec 2nd, 2008 at 9:57am
 
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
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« Last Edit: Dec 2nd, 2008 at 11:04am by MITYRARE »  

Paul
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DonnaH_again
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Re: WHY don't we pay attention to this?
Reply #2 - Dec 2nd, 2008 at 10:47am
 
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?
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George
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Re: WHY don't we pay attention to this?
Reply #3 - Dec 2nd, 2008 at 12:18pm
 
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.   Undecided

Best,

George
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Re: WHY don't we pay attention to this?
Reply #4 - Dec 2nd, 2008 at 1:49pm
 
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
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Re: WHY don't we pay attention to this?
Reply #5 - Dec 2nd, 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.
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Re: WHY don't we pay attention to this?
Reply #6 - Dec 2nd, 2008 at 3:20pm
 
ChefChris wrote on Dec 2nd, 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
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« Last Edit: Dec 2nd, 2008 at 3:22pm by MITYRARE »  

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Re: WHY don't we pay attention to this?
Reply #7 - Dec 2nd, 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
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Rolomatic
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Re: WHY don't we pay attention to this?
Reply #8 - Dec 2nd, 2008 at 4:17pm
 
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. Cool
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Re: WHY don't we pay attention to this?
Reply #9 - Dec 2nd, 2008 at 4:49pm
 
ChefChris wrote on Dec 2nd, 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 Wink
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Re: WHY don't we pay attention to this?
Reply #10 - Dec 2nd, 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.
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Re: WHY don't we pay attention to this?
Reply #11 - Dec 2nd, 2008 at 5:01pm
 
ChefChris wrote on Dec 2nd, 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.
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Re: WHY don't we pay attention to this?
Reply #12 - Dec 2nd, 2008 at 9:12pm
 
Au Contraire, madame, it does hurt- my wallet!  Grin   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.  Undecided

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.
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Re: WHY don't we pay attention to this?
Reply #13 - Dec 3rd, 2008 at 3:13pm
 
I have an appointment this Friday to have the lab work done. Thankfully the insurance co-pay is only $10.00.
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Re: WHY don't we pay attention to this?
Reply #14 - Dec 3rd, 2008 at 5:10pm
 
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.
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Re: WHY don't we pay attention to this?
Reply #15 - Dec 4th, 2008 at 5:43pm
 
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

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DonnaH_again
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Re: WHY don't we pay attention to this?
Reply #16 - Dec 4th, 2008 at 7:12pm
 
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  Cool
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Re: WHY don't we pay attention to this?
Reply #17 - Dec 4th, 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 ? Wink Thanks again for the info and I'll work on following thru

kelly
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Re: WHY don't we pay attention to this?
Reply #18 - Dec 4th, 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
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Re: WHY don't we pay attention to this?
Reply #19 - Dec 4th, 2008 at 9:02pm
 
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.
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MITYRARE
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Re: WHY don't we pay attention to this?
Reply #20 - Dec 5th, 2008 at 3:14pm
 
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
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Paul
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DonnaH_again
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Re: WHY don't we pay attention to this?
Reply #21 - Dec 5th, 2008 at 6:19pm
 
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

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.
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Re: WHY don't we pay attention to this?
Reply #22 - Dec 5th, 2008 at 6:27pm
 
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.
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Re: WHY don't we pay attention to this?
Reply #23 - Dec 5th, 2008 at 6:39pm
 
[
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. Shocked Cry

paul
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« Last Edit: Dec 5th, 2008 at 6:40pm by MITYRARE »  

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Re: WHY don't we pay attention to this?
Reply #24 - Dec 5th, 2008 at 6:50pm
 
mezza wrote on Dec 4th, 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 ? Wink 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
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