Any reason WHY we get these?

[BrokenArrow]

With regard to research done on our condition - WHY?

Has there been any progress with research in recent years?

Can anything be "mapped" within our brain to show a cause?

I'm new here, and I can not believe there are others out there.  I'm happy to find this place and you people.  Nobody in life can come close to understanding how much I suffer.

The monster under the bed...

[Bonkers]

There is much to learn. Stick around. Most of us aren't up this late. Read as much as you can and ask questions tomorrow. Welcome.

[johnny]

the conventions are interesting

[BrokenArrow]

I see a lot of talk about shrooms and acid.

It seems that a lot of the people talk about these things loosely.  I wonder if everyone that has these headaches has done shrooms or acid in their life before?  Could it be a precursor to them or be related or a cause?

I have a million questions, of course.  I'm trying my best to read a lot before asking too much, but this is one of the first things I'd like to cross off the list.

PS:  I am not anti-psychs.  Very pro actually.

[Psiloscribe]

As to what has been mapped in our brains, the only thing so far is that we have a slightly increased hypothalamus mass.

Whether that is a result of something else or a primary factor, who knows.

As to the question of prior use possibly being a factor, you can cross that one off the list, BA.

The vast majority of people trying this treatment had never before used psychedelics.

I would venture a guess based upon discussions with hundreds (thousands?) of people with clusters, that the percentage of people that have clusters and had used psychedelics prior to onset, matches the national averages of psychedelic drug use.

I think its less than 10% of US adults have used them and I'd think that number would match with cluster people.

Bob

[BrokenArrow]

Good feedback, Bob.  Thank you.

I've been "experienced" plenty in my youth.  Not for recreational use, but in a quest for wisdom and insight into the human psyche, as well as spiritual.  A couple people asked me if that could be related, so it's been in the back of my mind.

Personally, my monster came after a vehicle accident, so I always doubted the other theory.  But it's good to cross it off the list.

Glad to be here and looking forward to learning a lot from you all.

[Bonkers]

An MVA took my then 20-year-old son from being an episodic clusterer to a serious chronic. Interesting.

[RunawaySlim]

Really Bonkers?  As an episodic clusterer the thought of chronic is beyond me and my sympathy goes out to those. 

Anyone know statistics of going from epi to chronic?  Or vice versa?

[1961mom]

Interesting about head injuries....

I had my first attack at 17.  No drug use prior to my first attack, however at 2 months old I had a severe head injury.

[shaggyparasol]

My parents always told me that daily masturbation as a teenager causes headaches.  So I guess that is what happened.

--shaggy

ps, I take no responsibility for that remark.  My internal dialogue has been taken over by a demon who made it into my outer dialogue. >  Please send all complaints to OUCH UK.

[johnny]

My parents always told me that daily masturbation as a teenager causes headaches.  So I guess that is what happened.

--shaggy

damn. thats it!  ;D in which case there really is no cure

[birdman]

I have always swore that mine started around the time I had an accident.  Believe there was an untreated concussion. Never went to the doctor because I was fifteen and alcohol was involved.  Afraid at the time that my folks would kill me.  Twenty five years later, here I am.

[Brew]

My parents always told me that daily masturbation as a teenager causes headaches.  So I guess that is what happened.

I wonder if there exist any cluster headache sufferers who, for whatever reason, were born without hands....Might destroy your parents' theory and give you your revenge.

[Guest]

My parents always told me that daily masturbation as a teenager causes headaches.  So I guess that is what happened.

--shaggy

Please send all complaints to OUCH UK.

Bloody Hell!!

I blame the girl next door. Never actually did it for myself. 8-)

I wonder if ONSI recipients can increase the stroke.. :-/

[shocked]

The relapsing-remitting course of Cluster Headache, its seasonal variation, clockwise regularity, circadian rhythmicity, low testosterone, reduced response to thyrotropin-releasing hormone, blunted nocturnal peak melatonin, complete loss of circadian rhythm and a range of other circadian irregularities implicated hypothalamic activation as key to CH generation

Researchers used PET. positron emission tomography during in-vivo nitroglycerin-induced cluster attacks and conclude that  “the genesis” of which is to be found in the central nervous system, in pacemaker or circadian regions of the hypothalamic grey matter.”

The experiment was a great success and although it was way back in 98.it still seems to be standing the test of time. Perhaps the only “questionable” part was the “induced” attacks.

Recently, Dr J. Brittain, at University of Oxford recorded neuronal activity from a “spontaneous” CH attack during a surgical implant. Dr Brittain says this supports and extends the current literature.

Cluster headache is commonly stated as occurring in our third decade though it has been reported in all age groups including children. We might be safe to presume them to be “inexperienced”, without previous “head trauma” or history of “self gratification” 

Post-Traumatic Cluster Headache/TAC (Trigeminal Autonomic Cephalgia) is said to have a prevalence ranging between 5% and 37%.

ItÂ’s reported that because usually there is a long interval between the head trauma and the onset of the CH attacks, often many years after the incident, that it is difficult to make the correlation. (see the ballpoint pen x-ray!) 

Apparently, it seems that, one in every ten ECHÂ’ers turns CCH. and that a third of CCHÂ’ers turn ECH.

It is also said that a “substantial” number of us, can look forward to having more PF time -the older we get.

Conventions are interesting.

Its great to meet up with others and you can learn a great deal.

Here is a talk (not from one of our conventions but similar kind of talk) –

Headache 2008

Peter J. Goadsby, MD speaking at The University of Arizona College of Medicine at the Arizona Health Sciences

Part of the Neurology / Neurosurgery Grand Rounds

http://tinyurl.com/ag34o9 webcast

(biocom Biomedical communications. University of Arizona October 31, 2008)

Chose to watch by clicking either “windows media” or “itunes”.

Hope this helps

Shocked

First published in, The Lancet. 1998 Jul 25

Hypothalamic activation in cluster headache attacks

By; May, Bahra, Büchel, Frackowiak, Goadsby

University Department of Clinical Neurology

Institute of Neurology, National Hospital for Neurology and Neurosurgery, Queen Square, London

Quote -

“The relapsing-remitting course, its seasonal variation, and the clockwise regularity are characteristic but unexplained features of the disorder. The striking circadian rhythmicity of cluster headache has led to the suggestion of a central origin for its initiation. Substantially lowered concentrations of plasma testosterone during the cluster headache period in men provided the first evidence of hypothalamic involvement in cluster headache. This finding was further supported by a reduced response to thyrotropin-releasing hormone and a range of other circadian irregularities that have been reported in patients who have cluster headaches. Melatonin is a marker of the circadian system and a blunted nocturnal peak melatonin concentration and complete loss of circadian rhythm have been reported in patients who have cluster headache.

The endogenous circadian rhythm is run by an oscillator in the suprachiasmatic nuclei in the ventral hypothalamus and reacts to temporal environmental cues of light conditions via a retino-hypothalamic pathway. The hypothalamus, or a closely related structure, is a candidate site for triggering the acute attack of cluster headache.

Positron emission tomography (PET) is probably the best technique for visualising in-vivo changes in regional cerebral blood flow in human beings. This approach was therefore used to detect brain regions with increased blood flow during nitroglycerin-induced cluster attacks, focusing our interest on the hypothalamic regionÂ…..

Significant activations in the acute attack compared with the headache-free state were found in the ipsilateral hypothalamic grey area, bilaterally in the anterior cingulate cortex, in the contralateral posterior thalamus, the ipsilateral basal ganglia, bilaterally in the insulae, and in the cerebellar hemispheres.

Significant activation was detected next to the third ventricle slightly lateralised to the left and rostral to the aqueduct. The activation is ipsilateral to the pain side, lies in the diencephalon, and coincides with the hypothalamic grey matter.

Significant activation was detected in the right frontal lobe, bilaterally in the insula, in the cerebellum/vermis and in the hypothalamic grey matter

Our data establish that cluster headache, far from being a primarily vascular disorder, is a condition the genesis of which is to be found in the central nervous system in pacemaker or circadian regions of the hypothalamic grey matter.”

Recently published in Cephalalgia

Distinctive Neural Signature of Cluster Headache in the Hypothalamus

Dr J. Brittain,

Oxford Functional Neurosurgery,

University of Oxford

Quote – “During surgical implantation of stimulating macro-electrodes for cluster headache pain, one patient suffered a CH attack. During the attack local field potentials displayed a significant increase in power of approximately 20 Hz…this is the first recorded account of neuronal activity observed during a cluster attack. Our results both support and extend the current literature, which has long implicated hypothalamic activation as key to CH generation,..”

Cluster headache (updated)

By Dr. Manjit Matharu  9 Feb 2010

Institute of Neurology, London

Cluster headache (updated)

Clinical evidence BMJ.

About this condition - Cluster headache - Neurological disorders

“Onset of symptoms most commonly occurs between the second and fourth decades of life, although cluster headache has been reported in all age groups. Although there is a paucity of literature on the long-term prognosis of cluster headache, the available evidence suggests that it is a lifelong disorder in most people. In one study, episodic cluster headache (ECH) evolved into chronic cluster headache (CCH) in about 10% of people, whereas CCH transformed into ECH in one third of people. Furthermore, a substantial proportion of people with cluster headache can expect to develop longer remission periods with increasing age.

There is an increased incidence of previous head trauma in cluster headache, ranging between 5% and 37%, although there is often a long interval between the head trauma and the onset of the headaches”

Trigeminal Autonomic Cephalgias Due to Structural Lesions

Irene Favier, MD, Department of Neurology, Leiden University Medical Centre

Arch Neurol. 2007

http://archneur.ama-assn.org/cgi/reprint/64/1/25

Shows a x-ray of the skull of a now 43-year-old man, showing a ballpoint pen located at the right side in the region of the cavernous sinus. The patient had been diagnosed as having episodic cluster headache 6 years previously. He reported having had an unintentional injury in his childhood: the pen had perforated his right cheek and the base of his skull during a fall. Neurosurgical intervention to remove the pen was considered impossible because of its location. A relationship between the ballpoint pen and the headache is far from certain, since the onset of the CH attacks was many years after the incident.

[Mad6string]

It's kinda strange that I started getting " child migraines" after a bad accident at 3 years old. It eventually turned into the beast we deal with daily.

[tingeling]

Thank you. This is interesting reading.

[MattyAA]

I remember few head injuries and some traumas aswell in my childhood, I think I started getting headaches at the age of 13 or 14... in age of 12 or 13 I had fight in school which ended with me having nose broken and other guy having black eye.

And since I was 7 or 8 I suffered from Obsessive Compulsive Disorder, which diminished to really not so annoying state  as I grew older, also I took some psychotropic or anti epileptic meds, like Dipromal for a long period of time for that OCD of course.

Also suffered from the youth reumatism or something they mentioned that if meds dont work I would get titan joint in my hip but fortunetly illness stopped even though till age of 23 I am now I feel reumathism pain in joints, my backbone and some other random pains in muscles, sinews at times.

Just though I would give out info in case...

[1961mom]

Shocked.....your posts are always informative.  Thanks for sharing.

Poor guy with the pen in his head!  Dang, I'm like...."can he feel it in there, or what?"

Gives new meaning to my one-liner around the house-

If there is going to be something wrong with me......

It will all be in my head!

[MattyAA]

I liked that article that mentioned some kind of plant, that caused CH attack in patient who was out of cycle, he broke its leaf and sniffed in the aroma of it, seconds later he felt cold feeling in right nostril and a devestating attack came on feeling exactly like cluster headache.

Then I read some more about that and found also another page stating non-headache person experienced very strong one-sided sharp throbbing pain around his eyesocket.

Which seems there is some mechanism to the one-sided orbital pain that is launched all over the trigeminal nerve.

Very interesting.

[MJ]

Recently published in Cephalalgia

Distinctive Neural Signature of Cluster Headache in the Hypothalamus

Dr J. Brittain,

Oxford Functional Neurosurgery,

University of Oxford

Quote – “During surgical implantation of stimulating macro-electrodes for cluster headache pain, one patient suffered a CH attack. During the attack local field potentials displayed a significant increase in power of approximately 20 Hz…this is the first recorded account of neuronal activity observed during a cluster attack. ,..”

Thanks shocked.

I hadnt seen or heard of that one before but makes some sense.

I am far from informed on this but I think I heard normal brain frequencies run in the 7-12 HZ range and above that is considered to be the frequencies of extreme relaxation. Those periods are often associated with an attack onset. 20HZ would be a fight response against sleep.

Many of us have noted short periods of extreme exhaustion before an attack or in periods just prior.

Interesting way to measure a jump in the brains own electrical frequency with the stimulator electrodes as the reciever that were designed to input their own currents.

Maybe some of those many who have the implants not helping would want to hook up some potential meters for better clarification and analysis during attacks.

Frequency modulation or occilation in a clusterhead- something for the engineer types to mull over.

A faulty electro chemical frequency modulation circuit? Are the alternates providing that correction? A review of some earlier research on the effects of phsycadelics, may reveal something profound from what we allready know, who knows. Maybe more than a receptor issue. Maybe an input or absorption beyond the receptors. Just thoughts.

[tingeling]

I have been wondering, electrical shock, to shock system back in place, since implants are done, is it tried with "old fashion" type of electrical shock? Just been wondering. Because of the fact that it is still used to bring balance back in other disorders. Electricity from the outside, maybe stronger, but with years apart maybe better than small every day from a implant inside?

Far far from knowing anything at all, i just ask because i been wondering about it for a long time.

It sounds stupid, i know..... :

[MattyAA]

There was also somewhere on internet case of soldier who got struck by lighting when on train-camp with no cover who got lighting struck through his arm and hip, he was in critical state but survived and developed CH-like headaches.

[tingeling]

Yeah, but in controlled most likely lower el. And maybe he didn`t have a wrong balance in the first place.

But, who knows, just been wondering ;D

[shocked]

Thank you for your interest.

More on oscillations and frequencies -

Beta-oscillations in the posterior hypothalamus are associated with spontaneous cluster headache attack

Nager Wido

http://www.springerlink.com/content/l2313844417720u0

Journal Journal of Neurology

SpringerLink May 14, 2010

And this piece is an interesting read, donÂ’t let the title put you off -

Microrecordings within the posterior nucleus of the hypothalamus in pain and aggressive behaviour

By Roberto Cordella

A thesis submitted in conformity with the requirements for the degree Doctor of Phylosophy

http://www.openstarts.units.it/dspace/bitstream/10077/2573/1/RCordella%20PhD%20thesis.final-1.pdf

And this one -

Hypothalamic Deep Brain Stimulation in Positron Emission Tomography

Department of Systems Neuroscience, University of Hamburg

Arne May

http://www.jneurosci.org/cgi/content/full/26/13/3589

The Journal of Neuroscience, March 29, 2006

Â…..the pain of cluster headache does not arise from a primary dysfunction of the trigeminal nerve itself, but is generated directly from the brain, involving a complex neuronal network.

Â…Â….it may be hypothesized that the symptoms of CH are caused by a low threshold "oscillator" that is generated by the hypothalamus and subsequently activates cortical structures of the pain-transmitting system leading to the characteristic short-lived trigemino-autonomic pain.

shocked