Posted by SteveY (195.102.27.103) on October 09, 2001 at 08:59:36:
Having recently visited Proff Goadsby's research unit in Queens Square London, I feel I must post my experience and views on the future of research and cure of CH.
The following is a combination of my experiences, my views and the views of the Queens Square research team.
The reason we suffer the intense pain of CH is that a signal sent by the hypothalamus in the brain instructing the blood vessels and arteries on one side to dilate. The mechanism of which I'll touch on later.
This signal is a fault, not unlike the faulty signal sent by the brain in sufferers of epilepsy.
What happens next is that the vessels on the affected side swell to up to 20 times their normal size, crushing the tri-geminal nerve and producing excrutiating pain. Bear in mind that the hypothalamus controls the lower functions of brain activity, heart rate, breathing, sleep etc.
So the signal to dilate has been sent, you're in agony from the pain, what should happen now?
Because the higher centres of the brain ( thought process, reasoning etc) are saying help were in pain, a signal is sent back to the hypothalamus via the tri geminal nerve indicating pain.
The hypothalamus itself although not split into two halves, works as two individual units, that is to say although connected by neurons and the presence of neuro transmissions, when one half of the hypothalamus is active, the other half is predominantly dormant.
Back to the signal for help I'm in pain, this signal hits the active side of the hypothalamus asking for relief. No says the hypothalamus everythings ok as it continues to send out its faulty signal to dilate the vessels. What should happen is the signal requesting pain relief should be sent to the dormant side not the active. In essence "faulty wiring" or as some refer to it as too many cells around the hypothalamus.
If the request for pain relief was sent to the correct site i.e the dormant side, endorphins would be released to kill the pain or even make the sufferer pass out. This explains why the body doesn't respond to the pain of CH and release endorphins. In other words it doesn't see the pain due to faulty wiring in the brain.
Future Research
The cause of CH, i.e the condition not the mechanism of pain, is now almost certainly hereditary. We (sufferers) all carry this gene, which when triggered starts the process of CH. Future CH sufferers have the gene, but it is currently dormant. How it is activated is not known.
The incidence of CH in the general world population is 1:1000 or 0.1%, when this incidence rate is conducted within familly groups the ratio is 30:1000 or 3% quite an increase. The familly incidence tends to be 3rd or 4th generation i.e not mother, father, brother etc but more likely to be a cousins grandchild for example.
The cure is to identify this gene and switch it off.
Queens Square are currently trying to isolate this and when this is achieved I belive the cure will come.
Just a quick note on the shroom therapy, again my view only,(there are others here who know more than I do on this subject) the initial mechanism, or the faulty signal to swell the vessels is started by yhe hypothalamus in conjuction with serotonin snowstorms.
To reset this mechanism something with a very similar anatomical structure to serotonin is needed to bind with certain 5htp receptors. this is psilocin, which has the effect of resetting the initial faulty signal and stopping it from being sent.
This therapy works better in eposodics than chronics(of which I am one) I believe this is because eposodics have periods when their hypothalamus is normal or out of cycle.
Chronics are advised to do half rereational dose then quater. I feel the result for chronics would be better on quater dose, re doseing as many as 6 to 10 times over as many weeks (other peoples views on this appreciated, Flash, Pinky etc)
Nearly finished now.
The ultimate cure will come I believe on identification of the afore mentioned gene, and I can assure you all that the research team at Queens Square are totally commited to finding "the silver bullet".
The reason for this post is to give hope to all my fellow sufferers and if it is of some comfort to anyone then it has been worth the hour it's took me to type it(secretary I am not)
PFDAN to All
God Bless the Allied Forces
Steve