Posted by Michel L (142.169.160.99) on August 30, 1999 at 21:56:19:
Sorry, I never posted before, also excuse my english, I’m a French Canadian who works and live in French in Quebec City.
A few months back, I did’nt know what was the problem. I am 44 years old and only a few years ago I started to have those extraordinarily painful headaches. I would enter the office about the same time, and around the same time I would get these sinus-eye-ear and head burns that would drive me out to take a walk with a kleenex to pick-up the tears coming out of my right eye. This condition would last a few weeks and then go away. I must have had some sinus problems, since sinus and cold remedies seemed to give me some relief. Probably it was a symptom of being burned out, since I did work a lot...but strangely I was’nt really depressed.
Then, one autumn, same thing again, and this time I was off work due to back problems. In the morning, I would take a walk since it was good for my back, and coming back, at the same time, each morning, those crazy attacks (probably some at other times, but I don’t remember), would make me ramble around the house, holding my head, putting my fingers in my ears...anything.
Went and saw my doctor, could’nt see what it was and precribed something with codeine. I still had the attacks, but those pills helped and it finally gone away...those pills were good I told myself.
Next spring...ouch again, this time I found a day cap that gave me fast relief but it still did hit me with regularity...at least I tought, I have those pills as back-ups.
I requested an emergency visit to my dentist and explained my pain to him, must come from my molar...the pain that irradiates from there is terrible. Xrays and all, sorry, your molar and surrounding teeths are okay...must be your trigeminal nerve that is irritated. Doctor says, don’t think so, it should be painfull all the time, not bursts. Why not have a sinus Xray...nothing there. And why not, I told myself...I’ll have my eyes examined. I must have an eye problem...it makes sense since I work a lot on computers. And the pain goes away...
Few weeks before Chritmass...bang again. Emergency, I want to see my doctor. You must suffer from migraine. Sorry doctor, I know migraines, I have lived with them since I probably was 10 years old but none for the last few years. I know what a migraine feels like; it’s bad, but it’s not like crucifixion. Well then, let’s say it’s some kind of migraine and I know of this product that seems to work...imitrex.
First attack...wham bam...magic...no pain and no afterpain; I can read a whole novel the same night. Well, it’s not so great anymore...it still works but I no longer so painfree. But back to my story.
Imitrex : My good wife checks the internet to see if that medication was about to kill me. What’s that, it’s also usefull for clusterheadaches ???....link to clusterheadaches.com
I was sitting at my desk in my office and the phone rings...Hey Mike, look at this site, it looks like what you have. She had sent me the link on email. I checked it out...what a discovery...that’s me...I’m not crazy, this description of the pain, this other description of the frequency...my God, other people have it and best of all there’s a website, links, resources.
I am not a very shy person, so I print out everything significant, make a nice folder to the attention of my beloved doctor and stop by is office to give him some reading material.
(As a comment, I would say that Dr’s generally have no imagination and only beleive what they read in an official medical book. They can’t link information in their head, they just repeat what they read, what they saw, and they will simply repeat treatments that have worked in the past for others.)
Again, lacking any initiative, I had to recontact my good Dr. to ask him what he tought. It made sense to him...so he prescribed more imitrex. Imitrex are good doc, but how about you refer me to a Neurologist...there must be someone in this City with good knowledge of headaches, migraines, brain tumors I don’t care (In this province, to see a specialist, you must be referred by a general practitionner or another specialist since the governement pays any and every consultation...they’re so busy it seems).
Lucky me, he really new the name of a top neuro. So for this cycle (it just ended a few days ago...(I hope)), I got the prednisone treatment...felt I little puffy, heavy head...but only a few crisis.
All this to say what ?
Well, I have been observing this site for a few months, reading the board, following medical links, searching about all those medications, how they act, on what they act. Reading those “home remedies“ and mainly asking myself how come I got these clusters at around 40 and most got them a lot younger. And my neuro telling me that I quite old to start having those, but he had a patient who started at 60. So? why not at 20,25, 15, 30.
THE INTERESTING PART :
At around 35, in spring I had an acute pericardium inflammation (that’s the envelope of the heart getting inflamed) the cause, determined after serious blood analysis was determined as a reaction to a cytomegalovirus. The good cardiologist told me that this may reoccur but with less intensity as years would pass. So I asked, why did it cause this reaction ? Well he said, it may have come out as a cold, or you may have had some flu like symptoms, but your immune system as decided to let it infect your heart envelope and fight it there. Next spring, as deemed possible, I began to feel the same heart constriction phenomenom, so I jump started treatment and took massive doses of entrophen (coated aspirin), since that’s how it was treated the first time, and it went away.
Let’s go back in time : In autumn 1992 I really hurt my back and my good family Dr. put me on a 2 Voltaren per day regimen. Plus why not, some flexaril to relax my back muscle...3 per day. I took those for months since my back was hurting all the time, everyday, always. I got fed up and stopped at the end of the winter....spring : acute pericardium inflamation. I got back problems again the next year and let’s go again for the Voltaren-Flexeril mix for awhile...stopped and a few weeks later...slight pericardium inflamation again.
I strongly beleive that there is no link between taking these pills and the inflamation. But I strongly beleive that these pills did put my immune system out of wack and caused my system to react wrongly to the virus infecting me. Subsequently, one or two years after that I started having the clusterheadaches ‘at my advanced age’.
I think, after reading a lot of messages on the board, what seems effective medication, effective prophylaxis, people taking ‘cold remedies’, looking at average lenght of a cycle for those who are episodic, the usual time of the year when it seems to strike, altought it appears that many have some freak episodes out of timing with their usual cycles, that clusterheadaches are the results of an immune system disorder originally caused by an unusual response to a viral attack. This original unusual response may have been caused by different factors, namely some medications, stress, fatigue at a certain point in your life...and this out of whack response continues today in the form of clusterheadaches cycles.
Why do some experience remissions for years, and then, suddenly, they have a cycle. Why is it that out of a cycle nothing will trigger an attack ? My God, when I am out of a cycle I can drink 10 beers on a Friday night and have a good hangover on Saturday but no cluster.
Why is it that this summer everybody at the office had a cold, some missed work because of it, and all I had to show for was a terrible cycle of clusterH and a cold that finaly surfaced after everybody and began to signal the end of my cluster cycle.
We are exposed, at different times of the year to viruses or contagious ailments of many kinds, brought in by our co workers, friends, family members . I beleive that the cluster cycle is an expression of the fight by our immune system to something and most probably a virus. Not one in particular, many possibly. Our immune system has at a certain point been disrupted in the way it fights certain sickness that should be ordinary, and now we pay for it by experiencing excruciating pain in our head, the fight must be going on in our vascular system, in our brain cells, our chemistry goes awry. The next guy may get a sniff, light headache, some fever or no reaction at all.
I don’t beleive that one morning our system decides that it’s time to release massive amounts of histamines in our body, inflame our brain vascular system and generally wreck our lives. I do think our immune system is responding to an attack of some kind at a certain time. Ask any doctors, even if they don’t know much, any virus, for anybody, will take weeks to fight by the immune system. The response by the body may be on a curve during that time, from strong fight et lighter fight to the point where the sufferer thinks it’s finished. But when the response is from a cluster sufferer, there is’nt much of a curve, the fight is painfull from the first day onward... But we do have generally a few day’s notice at the beginning and at the end.
I will continue to explore this avenue, this link that I beleive reasonable between cluster and immune system response. Even if it’s only for my own personnal satisfaction, because what I did’nt really discover yet is what I should do ? Reduce the strenght of the immune system (as is being done with prednisone during a cycle) or find a way to reinforce it before the onset of a cycle and risk 10+ attack.
You may not read from me for months, but I will read the board and consult this site regularly. It as been a real life saver for me. When you start to doubt your saneness, think you are unique and alone, and no one else in the whole wide world suffers this stupid, unexpected and cruel ailment and you find this site...well, your head does’nt feel better...but your spirit is lifted and you finally know you are not going crazy and you don’t have a mental illness. You just have an illness and it as a name : CH.
Thank you DJ, merci
Michel L’Ecuyer
Quebec - Quebec - Canada