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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Questions about time when NOT in an episode?
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Message started by void on Sep 12th, 2009 at 7:08pm

Title: Questions about time when NOT in an episode?
Post by void on Sep 12th, 2009 at 7:08pm

After reading I get the impression that the hormonesystem is messed up for CHs. Basically I have the perception that even though you are painfree you are still "sick". There are problems with CH that are there always regardless if you are in an episode or not. My reasoning is this: If your hypothalamus is messing up your circadian rythm -doesnt it do it always?

I am not a doctor and I don't know anything about doctoring. I just got curious about if there might be other issues.

I for example have always had terrible problems getting tired and going to sleep. Doesnt matter if I am in an episode or not - I just don't go tired until like 0330 in the morning - and when I sleep I am very active. Talking :-) , turning, moving and so on - then I read about the melatonine treatment and figured that fits with the bad sleeping as it regulates sleep.

Anyone know more?

Has anyone here had their hormone levels checked?
Were they "normal" or were they odd in any way?

How about heart-problems? Palpitations? High heartrate?

How about tremors? Anyone have problems with that?

How about problems sleeping/fitful sleep/problems going to sleep (even if not in pain episode?)

Bellyproblems?

Strength/stamina issues?

Metabolsim issues? Always fat or always skinny?

Memory/concentration issues?

Inflammatory problems?

Title: Re: Questions about time when NOT in an episode?
Post by Lawrence on Sep 12th, 2009 at 7:51pm

void wrote on Sep 12th, 2009 at 7:08pm:
After reading I get the impression that the hormonesystem is messed up for CHs. Basically I have the perception that even though you are painfree you are still "sick". There are problems with CH that are there always regardless if you are in an episode or not. My reasoning is this: If your hypothalamus is messing up your circadian rythm -doesnt it do it always?

I am not a doctor and I don't know anything about doctoring. I just got curious about if there might be other issues.



I hinted around at this very notion about a week ago....nobody really responded to it....i know its far-fetched, but then again it might not be....
heres what I wrote:

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I know we don't know what causes it..but i would like more doctors to research what causes it than spending time wondering what triggers it...we only know what happens while its happening......with that being said.....

i could just go out on a limb and say....that the cluster headache is a hormonal process taking place in my brain....
it happens all the time....all year 'round....i dont even feel it most of the time...but for some reason this process starts to become painful...thats when I feel it......and only painful for 3 months out of the year....
with all other things being equal, and no change in my lifestyle, no change in exposure, diet, stress level, ANYTHING.....the change is internal with no known cause.....


i dont know what to think anymore....it remains a mystery...
i guess i'm reaching, or playing devils advocate....i dunno

Title: Re: Questions about time when NOT in an episode?
Post by DennisM1045 on Sep 13th, 2009 at 10:55am
There is a thread on testerone deficiency that runs along these lines.  Some folks have had success going the hormone replacement therapy route.  Though I'm unaware of any long term success.

There has long been the theory that our condition is always there below the surface but that it only breaks through into a cycle at certain times.  This makes sense to me.

Here is a link to the thread: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

-Dennis-

Title: Re: Questions about time when NOT in an episode?
Post by void on Nov 7th, 2009 at 9:43pm
I've been reading more since I posted this, and have become even more certain there are bad effects of CH even when in remission.

Found several studies that indicate this:
Meyer EL, Waldenlind E, Marcus C.
Diminished nocturnal lipolysis in
cluster headache: A sign of central
sympathetic dysregulation? Neurology.
2003;61(9):1250-4.

Given the abstract I read it seems lipolysis does not work as it should.

Other study indicates brain & mitochondrial respiration dysfunction both during and after episodes.
(Welch 1989, Barbiroli 1992, Montagna 1994)

Yet antoher study seems to indicate messed up GH hormones -

A chronobiological study of melatonin, cortisol growth hormone and prolactin secretion in cluster headache.

Chazot G, Claustrat B, Brun J, Jordan D, Sassolas G, Schott B.

I do not have references - but I remember I read another study that indicated that at least part of the CH population also had messed up testosterone levels.


I do not know about you but I think the smart-doctor-people-persons should look more into cases of remission. I can't believe it is healthy for any person to have messed up hormone levels and secretion for their entire life. It would not surprise me if this in turn means we have shorter lifespan as well.

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