Posted by Michel L (142.169.162.151) on September 23, 1999 at 12:59:25:
Hello again to everyone,
This is for amusement purpose only, for all matters relating to health and medications, consult your competent physician.
I post once and again to submit theories and insights on my own experiences and research on CH. I have suffered from CH for only a few years, so I am not as experienced as others on the subject.
I know how tired some of you are of reading theories and hunches. But since I have refused to let the Demon get me, I am after it with all I’ve got. I hope I won’t be having CH attacks for a long while altough I will be a CH potential sufferer all my life. I do get mild pains for a few minutes now and again, but I can manage them with half a regular chlor-tripolon (2mg), and have a beer afterward just to test myself.
What am I rambling about ?
Management of CH by softer means than Prednisone and heavy artillery drugs. Quite early on it made no sense to me that my head could hurt so much and that it was normal, or occuring normally in people. If I was’nt about to die, then, there had to be an explanation to these horrendous headaches.
If my MRI is normal, no reason for me to have such pain. There as to be a reason outside my head but somewhere in my body. But then, why is it not chronic for me, why are these episodes ? If someone is hit by a baseball bat he will hurt everytime, no exception.
I was taking prednisone and imitrex to the point of thinking my head was a football. The heavyness was unbearable.
On a few occasion on this board people ridiculed or made quite stupid comments on some approaches they did’nt try, as if they were working for drug companies who would try to belittle simple and economical approaches to the CH relief.
This corporate approach is quite simple :
First : Make them believe it’s in their head.
Second : Make it complicated.
Third : Sell expensive drugs to relieve their pain.
Fourth : Never find a cure and make us indispensable.
I would personnaly say THINK for a second about the hypothesis that are submitted, then if you are stupid, respond stupidly. If you are intelligent, just try some of the suggestions and then comment on the results, probably you won’t respond the same day, you may respond or post a few weeks later. Only miracles are instantaneous.
I can’t really respond to stupid comments. I was born and raised using french, I have learned english in school as a second language and by my reading of english documents. My knowledge of english is academic. My knowledge of CH and the treatments I apply are from my own experiences and through contacts with other CH sufferers who no longer post on this board. I discovered that the archives do contain some usefull informations and that those who feel better after months will respond politely to inquiring emails. Sometimes postings were very short and unresponded, but they did contain valuable informations.
Some of you wrote to me directly and sent encouragement to pursue my research and made some of the same connections between the action of the immune system and CH that I forwarded like some others in the past did on this very board.
So I did try on myself my own solutions and avenues for relief after continuing to look around archives, med sites, natural medicines, plants, food supplements, all sorts of sites and trying to make cognitive connections between hypothesis and known facts.
I am no doctor, so don’t hesitate to consult your doctors if you want to be reassured that you are taking the proper medication to relieve the pain in your head. I don’t mind, but I care. This is why I post this today. I strongly believe in free will, so if you want to ruin your lives and your health by taking hard drugs that have doubtfull and temporary effects and give partial relief to a permanent problem, then it’s your head, it’s your pain. And my greatest apologies to all those who cannot try my way because I do also believe that some are too far gone in ruining their own recovery systems after years and years of using powerfull medications.
All this introduction to say what if anything ? (this is not an X files after all and ramblings must stop somewhere).
In a past posting I was on a warpath against viruses-bacterias-allergies, putting forward that our immune system was responding incorrectly to the action of these attacks. I think I was very wrong. Our immune system in generally in good condition.
1) Margi suggests water, water, water. Water is a neutral liquid that is necessary to life. It hydrates the cells of the body, it usually helps after drinking alcohol to releive a hangover by rehydrating or increasing the fluids in the vascular network since alcohol needs more water to eliminate than it brings to the body, it also helps the body to eliminate toxins by saturating them and increasing the flow in the kidneys. So water does give relief, but not enough and not always.
2) Many consume anti-histaminic products : benydril, Chlor-tripolon, all sort of cold remedies containing anti-histaminic drugs and decongestant, and it gives them relief to some point. If increased histamines level is part of the problem, then anti-histamines may be part of the solution, same goes for anti-allergy medicines.
3) Life itself is circadian, sleep, digestion, daily changes in hormones, blood pressure etc. So no surprise that attacks may follow some kind of timetable and even this is not immuable...the proof being that the majority of sufferers can identify triggers that will bring an almost immediate reaction and this, out of their expected timetables,
4) Accidentally, some sufferers were brought to be prescribed anti-fongic medecines for reasons other than CH and got some relief from CH at the same occasion. Some, a very durable relief, repeatable if they took the anti-fongic agent during a later bout of CH.
5) I also was notified by a sufferer that 2 related people, operated on their digestive system, long sufferers from CH who had overconsumed medications over the years obtained full and durable remissions after their operations.
6 Many it seems, after being afflicted with some bacterial or viral infestation were prescribed antibiotic and were soon after suffering from CH or started a cycle.
7) Some, have worst cycles if accompanied by a cold or a flu.
8) Some others notified this board that they started a cycle after getting a booster shot against a possible viral infection; chicken pox for instance.
9) Some of you may have eard of the fetal cytomegalovirus, it may account for Dr. Goadsby’s find about the larger than normal hypothalamus of some sufferers.(On this one I have’nt the foggiest idea and I don’t mind)
10) Many of us it seems, those who got CH after 20 years of age, remember suffering from migraines or frequent headaches before suffering from CH...so we are sensitive in that area; we tend to have pain in the head region when the proprer elements are in place. Those who got CH very very young and are now mature can’t really remember the before CH era for them.
11) By some incredible phenomenom they can’t explain or replicate, some sufferers have remissions that may last for years and suddenly fall again in a CH cycle, mild or violent depending. Some maintain their pain free days and are still pain free not knowing why.
We may all believe what we want, I have chosen to believe that I suffer from an intoxication and that my body is simply responding to it. Some medications, most viral infections, some bacterial infections, will lower our capacity to treat what we consume correctly. By destroying part of our digestive or intestinal flora, we give way to the opportunistic presence of other organisms in our digestive tract and react badly to some foods or drinks and may even fuel these organisms and perpetuate the CH cycle. Most of you will admit that the medications you take and that I take, relieves only one attack at a time, a few hours at a time. Then, suddenly, attacks are getting less frequent, and disappear for a few weeks, a few months, a few years...and they come back.
I don’t believe in a final cure for CH, I simply think it is very manageable if proper attention is given to it. You may eventually forget you have it. The organism, let’s call it Candidia (the BEAST little helper) for the purpose of this discussion, is a pathogenic fungus that likes warm and moist places (how about your intestines). The little bugger likes to be left alone and will feed itself on sugar and complex carbohydrates. It is a great season for it if other ailments are assailling you, a cold virus, a flu bacteria that you will fight with your immune system and you destroy part of your normal friendly elements in your digestive tract and give more space to the little devil to expand its territory and is family of relatives, since it seems to be quietly living its life in your abdomen, you won’t be looking for it and your doctor won’t either.
If you put water in your gasoline and the motor of your car stops, don’t fix the motor, it’s fine. Purge the gas line, put new gas and the car should be ok.
I don’t wan’t to detain you for hours, and I am an impatient person myself so I won’t cite every documents, email, web sites I consulted. I will give you the general idea, if you wan’t specific details, you can go to med school, see your local doctor (who hase’nt done much it appears) and why not, your gastroenterologist who may even believe this story.
I am not inventing anything, all of this has been said, written on many occasions. The connections were not all there and they were not necessarily applied to CH since CH is not a common occurence in the general population. Do not forget that not only do you have terrible headaches, you have muscle aches, are more sensitive to temperature variations, you’re easily cold, irritable, hyper, down you name it...it’s never only the headaches. You are intoxicated or on the treshold of being intoxicated.
First : Prepare yourself for war. Ingesting Echinacea, feverfew, B2 and Yogourt bacteria (you don’t have to actually eat yogourt, some of you have suggested that eating ‘14’ yogourt per day would give them gas, and drink a lot of water. Concerning the yogourt bacterias, try to find a formula, usually refrigerated capsules sold in health food store, containing billions of bacterias, not thousands, that’s too few. This will replenish your gastrointestinal flora, and also give you the primary effect expected from these products (boosted immune system, reduced inflammability of the intracranial blood vessels. For myself I add cat’s claw....and a little magnesium.
Do not drink if at all possible soft drinks or eat spaghetti and products containing msg. Egg yoke at this stage should be avoided. Anything than can ferment and that contains a lot of sugar will boost the bugger.
Second : After a few weeks, hit hard by adding Diflucan, it is a very effective antifungal agent that must be prescribed. It will eradicate most of the candidia in your digestive system. Some will remain it seems; candidia is never totally eradicated, but it is very opportunistic in its growth if not limited by the healthy environment you have prepared.
During all this will you still have pain ? Sure you will if you are in an active cycle, you have billions of cells to flush out of your system. I did’nt say to cut the rest of your medication...but eventually you will be out of cycle and I hope in a long remission. Stay alert to seasonnal events, like the flu season, control your histamines if you are allergic and mostly keep your digestive system in top health, it may keep you away from the emergency room for awhile.
If I am totally wrong, then, as I stated in the beginning, this is for your amusement only. You can choose to read it as you would read a magazine sitting on the can.
Pain free days to all of you. May someone arrive with the magic medication someday.
Michel L
Québec