Some researches suggest that CH may be associated with some type of para influenza virus that affects the brain. Did anyone hear anything about this? Any citations or link to an authenticated full research?

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One patient.

Doesn't make my nipples hard.

Yeah exactly, hence I am looking whether there is more research on that. It just got me thinking.

I read about a similar study several years ago involving complex types of migraines.

The older study alluded to a possible connection with CH's, but I wasn't convinced that the subjects in the test really had CH's. Don't know the details of this study.

I've been blasted on this board many times times for saying this, but I'll say it anyway: I have seen a dramatic increase in CH being diagnosed when the doc simply doesn't understand the condition.

Marc wrote on Sep 2^nd, 2009 at 8:20pm:

I've been blasted on this board many times times for saying this, but I'll say it anyway: I have seen a dramatic increase in CH being diagnosed when the doc simply doesn't understand the condition.

Just who the f*** do you think you are anyhow?

(jes kiddin, big guy)

I've suffered with many doctors as a kid (most of them were professors unfortunately) who diagnosed it as migrane. One of them even -and I will never forget this - told me: "You have nothing, just some headache, c'mon deal with it!!!" and I cried as soon as I got out of his practice, but my mother comforted me and told me that she believes me there is something too extreme. This was like in 1990 or 1991.

I visited MANY other doctors during the years that followed, until my good doctor "who lectures in Switzerland, U.K, U.S.A, India, and Finland" and who is now the dean of the faculty of medicine in Alexandria, told me: "What you have is not a common thing, this is PURE SADNESS."

And I still remember his words until today. However, I was so glad while he was asking me questions, that someone FINALLY seems to understand what I am talking about, and since that day my proper treatment has started.

Viral? I doubt it but this is my first cycle in 6 years and it immediately followed a bout with the flu.

Brew wrote on Sep 2^nd, 2009 at 8:16pm:

One patient. Doesn't make my nipples hard.

[smiley=crackup.gif]  [smiley=crackup.gif]  [smiley=crackup.gif]  [smiley=crackup.gif]


Viral?  Hmm what does that do to the fact that in some it's hereditary ?    :-?   :-/   

This one case statistic is 11 years old and hasn't sprouted since then.

Publish or perish ....


                 [smiley=smokin.gif]

seaworthy wrote on Sep 2^nd, 2009 at 9:07pm:

Viral? I doubt it but this is my first cycle in 6 years and it immediately followed a bout with the flu.

:-?
Coincidence? or no?

Marc wrote on Sep 2^nd, 2009 at 8:20pm:

I read about a similar study several years ago involving complex types of migraines. The older study alluded to a possible connection with CH's, but I wasn't convinced that the subjects in the test really had CH's. Don't know the details of this study. I've been blasted on this board many times times for saying this, but I'll say it anyway: I have seen a dramatic increase in CH being diagnosed when the doc simply doesn't understand the condition.

You want to see a dramatic increase in diagnosis..... let the National Media do a prime time story on it..... all of  a sudden everyone thinks they got it.

Even if a trigerminal nerve inflamation caused CH in this guy it appears that it went away after the infection subsided.

So even if we accept that it did cause him a CH attack, it does not seem to be a good possible cause for CH. Since CH is episodic I would find it extremely rare that some of us get Parainfluenza every October or every 3 years and so on and so forth.

I have only recently been diagnosed with CH, so am in my first cycle 8 weeks on.

I was very ill with flu about 9 weeks ago. My Neuro thinks because I was so ill it triggered CH as I am prone to HA and suffer with tension/migraine. It wasn't to do with the virus itself though but more the fact I was seriously ill which triggered off CH.

Don't know if this means anything really and of course it could be just chance that I had flu before this cycle actually began.

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Title: "Cluster Headache Mimics"--useful article. Post by Bob_Johnson on Jul 30th, 2004, 2:04pm
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This is an important article to obtain and take to your doctor if you are having a difficult time getting a diagnosis of the type of headache problem you have and/or finding medications which give consistent relief for cluster. It is a technically difficult read for someone not educated in medicine. Its value is in providing case studies about uncommon conditions which appear to be cluster headache but which are, in fact, not.

Broad signs which may signal that the problem being treated is a cluster mimic are: having made a diagnosis of cluster, the standard medications do not work OR they work for an episode or two and then stop being effective. Second, if the diagnostic signs differ in important ways from the standard signs for cluster (and this is a subtle issue which requires a physician with sophistication).

One of the striking findings reported: Cluster can arise from head trauma as long as 30-years after the trauma!

Some conditions which can mimic primary cluster headache:

Infections
     Aspergillus
     Inflammatory disorders
     Wegener's granulomatosis
     Orbital myositis
     Plasmacytoma
     Multiple sclerosis
Head trauma
Vascular abnormalities
     Arterial dissections
     Arteriovenous malformations
Neoplasms
     Pituitary tumors
     Metastases
Other trigeminal autonomic cephalgias: SUNCT syndrome; Paroxysmal hemacrania; Hypnic headache

"Cluster Headache Mimics", Dale M. Carter, M.D.. CURRENT PAIN AND HEADACHE REPORTS, 2004, 8:133-139.
(Take this citation to your public library and they can order a copy of the complete article for you.)
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Brew wrote on Sep 2^nd, 2009 at 8:16pm:

One patient. Doesn't make my nipples hard.

Out of curiosity, how many patients does it take to make your nipples hard?

Pixie-elf wrote on Sep 3^rd, 2009 at 6:25am:

Brew wrote on Sep 2nd, 2009 at 8:16pm: One patient. Doesn't make my nipples hard. Out of curiosity, how many patients does it take to make your nipples hard?

41-60. ;)

Emma_s wrote on Sep 3^rd, 2009 at 4:22am:

I have only recently been diagnosed with CH, so am in my first cycle 8 weeks on. I was very ill with flu about 9 weeks ago. My Neuro thinks because I was so ill it triggered CH as I am prone to HA and suffer with tension/migraine. It wasn't to do with the virus itself though but more the fact I was seriously ill which triggered off CH. Don't know if this means anything really and of course it could be just chance that I had flu before this cycle actually began.

If your Neuro believes something like the flu can trigger a cluster, or like you said "the fact that u were seriously ill" is saying that whatever abnormality that spawns clusters was already inherent within you, but laying dormant so to speak. Just because you are prone to migraine doesn't mean you should have developed clusters just because you got "sick enough".

I dont know, it just sounds bizarre...your neuro.
We know how to abort these things, O2, imitrex, Zyprex, whatever...i'm more so interested....in what causes them in the first place......and more importantly....what makes them go away on their own when a cycle ends.....whatever internal hormonal changes that are being processed involuntarily need to be replicated manually at our own discretion.

Lawrence wrote on Sep 3^rd, 2009 at 7:54am:

Emma_s wrote on Sep 3rd, 2009 at 4:22am: I have only recently been diagnosed with CH, so am in my first cycle 8 weeks on. I was very ill with flu about 9 weeks ago. My Neuro thinks because I was so ill it triggered CH as I am prone to HA and suffer with tension/migraine. It wasn't to do with the virus itself though but more the fact I was seriously ill which triggered off CH. Don't know if this means anything really and of course it could be just chance that I had flu before this cycle actually began. If your Neuro believes something like the flu can trigger a cluster, or like you said "the fact that u were seriously ill" is saying that whatever abnormality that spawns clusters was already inherent within you, but laying dormant so to speak. Just because you are prone to migraine doesn't mean you should have developed clusters just because you got "sick enough". I dont know, it just sounds bizarre...your neuro. We know how to abort these things, O2, imitrex, Zyprex, whatever...i'm more so interested....in what causes them in the first place......and more importantly....what makes them go away on their own when a cycle ends.....whatever internal hormonal changes that are being processed involuntarily need to be replicated manually at our own discretion.

I am not saying that is the definate reason I got CH - my Neuro only thinks it may have played a part in it only because I have flu around the same time. There is no knowing really, but in my case it might have been played a part. Who knows!

Hope that makes sense!! Sorry if I wasn't clear in my post :) To be honest I am glad my Neuro knew about CH he told me to OUCH and get as much info as possible so I understand as much as I can from other sufferers.

As long as the neuro is helping you, and learning, give him a break. We are all guessing when it comes to ch. We don't know what causes it.  As long as he has an open mind and will research for you, I say good for the doc.

Charlotte

Well said Lawrence.
   My cycle started early this year(2 mo's) and I have been wondering why...I speculate that before this I went on a trip to France, and learned then about melatonin.  So I had taken it for a week or so after the trip, then quit.  I wondered if that little adjustment could have triggered it to come early.
    Just speculation of course,  any one else feel like something they took or a change in rhythms or routines may have triggered them to start a cycle early, or otherwise?  ??? :-/

Charlotte wrote on Sep 3^rd, 2009 at 8:28am:

As long as the neuro is helping you, and learning, give him a break. We are all guessing when it comes to ch. We don't know what causes it.  As long as he has an open mind and will research for you, I say good for the doc. Charlotte

oh dont get me wrong....i'm not condemning the neuro...i'm just saying that really his guess or his estimation is just another tab on our long list of possible triggers....which really isn't saying a whole lot.

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.....
the question to be begged.....can something with no cause really be cured?.......

thats just going out on a limb.....an extreme limb.....

Lawrence wrote on Sep 2^nd, 2009 at 11:09pm:

seaworthy wrote on Sep 2nd, 2009 at 9:07pm: Viral? I doubt it but this is my first cycle in 6 years and it immediately followed a bout with the flu. :-? Coincidence? or no?

In that we are discussing Ch then the answer would be yes/no/maybe

It has been known for decades that clusterheads as a group have high levels of antibodies to a variety of viruses ... viral infections can cause inflammation of the nerves.  Viral infections can mess up serotonin.


Quote:

Ann Ital Med Int. 1990 Jul-Sep;5(3 Pt 3):303-11.     New findings in cluster headache.     Giacovazzo M.     The clinical profile of cluster headache, in Italy better known as "Horton's histaminic headache" is described. The Author makes an inventory of all pathogenetic theories about this excruciating pain syndrome that strikes men more than women. On the basis of findings of the Author and his School over a ten-year period, there is a "periodic lack of immunitary oversee". The salient points of various stages of this study are: low frequency of HLA-B14 antigen with, in contrast, high frequency of the HLA-DR5 antigen of the major histocompatibility system. The HLA B18 antigen of the same major histocompatibility system has been found in patients who respond to lithium therapy. A lack of the HLA-B18 antigen has been found in cluster headache patients who are "non-responders" to lithium therapy. Low titers of antibody response in the pain free periods of these subjects, and high titers in the painful periods has also been found in the serum of cluster headache patients; the lack of alpha 1-antitrypsin in basal conditions; increase of IgE (PRIST) values in painful periods; high titers of C1qSp and KgBt circulating immuno-complexes. The cellular immunity studies of the patients showed an increase of the leukocyte subpopulations Leu7+ and Leu M3+. Besides, the natural killer function that contributes to the defense-mechanism against viral disease, was very low. High titers of anti-herpes simplex 1 and 2 viruses and anti-Epstein-Barr virus have been found in cluster headache patients and in a few observations of Burkitt's lymphoma with associated cluster headache.(