For your consideration, once more LONG POST

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Posted by Michel L ( on November 02, 1999 at 22:35:48:

DISCLAIMER : Before using, changing, trying or modifying medications, you should always consult a competent health professionnal. Before believing anything you read, you should ask yourself if it makes any sense. This posting is for your entertainment only and shall not be seen as having any scientific value. This can all be BS but at least it entertains me and I can practice my english. * Very unscientific terms and don't check my spelling * sometimes I write english words in french because they sound the same in my ears *
I have made a few postings in the past based on what I saw as reasonable. For a while I was on my virus trail, then on my candidia trail. This time, I am trying to put together all the commonnality I have encountered and these do not exclude my previous beliefs, they are now just more refined and I am trying to target the basics. I am trowing my hypothesis in this forum, hoping to find organised opposition by those who think differently and can base their assumptions on their own experiences and help me confront my own shortcomings in this unscientific endeavour.

Hypothesis :

For the vast majority of CH sufferers the root cause of the ailment is an injury to the myelin sheath that insulates the nerve fibers. When the myelin sheath is injured and the nerves are inflamed or irrititated, electrical impulses are either activated, short circuited or reverberate, resulting in increased and intense electrical traffic in the nerves. The cause of the myelin injury can be compression by a tumor, aneurysm, vascular malformation or other vessels. Other causes include multiple sclerosis, toxins and viral infections. Some cervical traumas could also be a cause of injury. Without myelin sheath injury, no true CH possible. I did not look at my own nerves, but some litterature suggests that electrical short circuit and ready use of sodium by nerves comes from nerve injury. A normal nerve would not short with such regularity or such intensity.

This being said, it is not because a nerve's myelin sheath is injured that someone will necessarily suffer from CH. Vascular sensitivity to inflammation is an important component that permits a cycle to take hold and mainly what nerves are "uncoated".

For a cycle to begin, certain elements must be present; the affected nerves or the main nerve implicated in the effect must be first in an irritable state and second, a trigger is needed. If the main nerve or related nerves are not in an irritable state, then, no cluster cycle will occur even if multiple triggers are present. The person may get HA, migraines or other forms of cerebral vascular pain but no CH. If it's only nerve irritation with myelin defect without the vascular irritability, then the person may suffer from bursts of Trigeminal neuralgia but no classic CH attack. Some CH sufferers have these sudden pain flashes without duration; that's because the vascular system is (temporarily) under control and the nerves firing electrical impulses can't rally the response system of the vascular environment. At other times, we go in a slow burn mode, being on the treshold of an attack for hours, suffering from a dull and constant pain, without actually having the attack until we are exposed to a rapid acting trigger or the nerve environment does'nt have the necessary quantity of sodium-potassium fuel to refire, Topamax users may have this feeling of being on the treshold but the sodium blocking effect of the medication prevents the initial burst.

For some of us, the problem is that the neural irritation agent is also the trigger, this is why the antifungal (candidia theory) therapy tried by some is working and not for others who have tried it. In most cases, wathever the triggers, prednisone will help because it reduces the irritability and inflammability of the nerves. Verapamil will reduce the blood vessels inflammation and interaction with the nerves by constricting them. The dangers with these therapies appear multiple. If the cause of irritation is not identified and resolved, they will only mask the problem for awhile and inflamation will persist and will soon reappear after the clusterhead stops using those medications. The irritation may become so prevalent as to require very high doses of pain killing medications. Oxygen acts the same way, by provoking the constriction of blood vessels and bringing needed oxygenation and relief of the irritated nerves. It takes out temporarily one part of the CH component but will hold back the next attack only as long as the irritated nerve refuels itself for the next firing and restart an attack; since the nerve as not really been deeply calmed by the oxygen, the attack may follow quite soon after the treatment. This may be why also coffee could be counterproductive in the long run; it may temporarily relieve vascular dilation but at the same time stimulate the nerves that are about to refire a pain signal with more intensity and on the whole, increase the duration of a cycle.

Viral attacks should also be considered differently. A viral attack must have in most case been the initial factor causing an individual to be a CH sufferer, but virus do not cause individual cycles all the time or at any time. They may cause them because they render the nerves irritable and most probably the vascular system too; then individual triggers perpetuate the cycle and these may include in those instances our own immune system defenses creating or generating toxins that will inflame the nerves and cause short circuits and other electrical impulses.

The attack does'nt last very long generally (altough minutes may appear to be hours), the reason is quite simple, the nerve sending the primary pain signal with very high intensity as burned all the sodium-potassium fuel it had available and must pause to recharge. (Some have found that eating pure salt on chips, or adding salt or being in contact with msg laced foods increased the frequency or the intensity of attacks, in fact their providing fuel to the nerve to refire sooner or with more intensity so these should be put in the fuel category and are not the triggers). Every other nerve in the hemisphere seems to be joining the party and they all send their pain signals, making the sufferer believe that someone is trying to enter his skull with a rusted screwdriver. This also explains why Magnesium is believed to be effective in reducing frequency or intensity of cluster attacks by interfering with the sodium at the nerves receptor level and since the pain becomes debilitating at even low levels, Magnesium is rarely sufficient enough.

So what I am saying basically, is that all cluterheadaches sufferers have the same organic defect, myelin sheath deficiencies. A period of elevated neural irritation or excitability and a drop in the irritation level will bring the end of a cycle. Depending on the irritation agents, relief may come in many forms and from one cycle to the next, this agent may change explaining why some drugs don't give the same results from one cycle to the next and why some cases have no real conclusion. I myself have some crushed or pinched nerves in my neck since my mid-teens, I became a clusterhead in my late 30's because that's when I had my myelin coating affected by a Cytomegalovirus. As my nerves were prone to inflammation, so my cycles began and became closer and closer instead of being more and more apart. Chicken pox and related viruses do have this characteristic of causing some mild to extended myelin sheath damage and even if the virus is inactive, the damage once done is irreversible; what varies from a CH'er to the next is the ponctual irritant and the lenght of time before the irritation is low enough for the cycle to stop.

A biotech company based in Montreal (Quebec-Canada) know as Theratechnologies is close to bringing on that market a compound that will signal the brain to produce and release natural growth hormones. The presence of this hormone in large enough quantity in the adult person may help the system to repair itself more efficiently and accelerate the healing process in many cellular 'accidents'. This is to be followed.

As for my immediate comments about treatments, again, these are only SPECULATIONS and not suggestions : depending on your general health, blood pressure, heart condition never try any of these without MEDICAL SUPERVISION :

Your cervical region may be checked if you have neck and neck to shoulder pain. Nerves in that area may be stuck, compressed and irritated; physiotherapy or chiropracty could help, coupled with anti-inflammatory medication (non-steroidal if possible) steroidal like prednisone if necessary. If the job is well done, you should have relatively long lasting result. (If any of what I wrote before is true).

If the inflamation is biotoxin dependant like candidia yeast residue caused by a reaction of your immune system, then medication like Diflucan can help clean up your system, decrease the immune system reaction and bring the inflamation level under the CHcycle level.

If the inflamation is caused by vascular friction due to the proximity to a nerve, then something like Verapamil may help, but then, short of having a specific operation to push the vein or artery away from the nerve, relapse will be frequent upon stopping the medication.

If the inflamation is viral or immune dependant, the virus will have to run its course anyway; all the regular arsenal can be applied, from prednisone to Topamax.

In every case, Oxygen should be effective during a cycle, but real metabolic oxygenation (the ability of your own blood stream to carry oxygen) is way more effective; a person in top physical shape should have short cycle and probably less than a level 10 pain and less regular attacks during a cycle.

Night attacks are easily explainable, poor breathing while you sleep makes your nerves oxygen deprived at a time they need it the most, i.e, when they are inflamed. The pain slowly builds as your defective nerves start to burn sodium, your whole head gets on fire and you wake up screaming murder. You are agitated, trying to get oxygen in your system by breathing hard...the pain goes away, and may start a few hours later when you fell asleep again.

So, ladies and gentlemen, what about this myelin sheath defect hypothesis and nerve inflamation cycle ? Any takers ? I almost persuaded myself.

For Margi's benefit, I will say that water always helps.

Pain free days and nights to all, and thanks for being there.

Michel L

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