Posted by Todd (216.199.5.158) on February 28, 2000 at 20:57:33:
In Reply to: People are missing and we need them! posted by Elaine on February 28, 2000 at 16:28:27:
Elaine, I feel very safe in saying that you need not worry. I can't imagine that anyone would leave the board due to anything you may have done.
I do believe I can offer some insight, however, as to the reason some have chosen to end their participation. It has been over a year since I found this site. As I recall, at that time there were only a few hundred responses to the survey. There are now thousands. This is, on the surface, a good thing. I have met countless new clusterhead friends due to the increased popularity of the board.
Lately, however, I see increasingly undeniable evidence that many of the people posting here do not suffer from clusters. No, I'm not a doctor and no, no self-respecting medical professional would presume to make a diagnosis based on internet posts. Nor do I.
But I have a pretty well-developed instinct for clusters. 17 years of episodic suffering and countless posts and emails with others who have even longer terms and in some cases chronic conditions has helped me refine this.
I feel for every migraineur, every sufferer of tension headache and every victim of sinusitus. I truly hope they find the help they so obviously need.
But (here's the part that confirms my post title), I really don't want them here. I want them to go find places where they can share their problems with other sufferers of the same problem, just as ch.com was once a place I could share mine. I can't relate to someone with allergies or tension headache....don't have either. They can't relate to me.
I don't care if a clusterhead vents, curses, uses HTML, cracks jokes, plays games or suggests dried ostrich manure (shaken, not stirred) as a possible remedy. I'll read and ponder any and every thing a fellow sufferer has to say.
But I can't offer anything to a non-clusterhead and they (excepting supporters, of course) can offer nothing to me. Shiatsu massage cured your tension headaches? Great. Be happy and live well. What does that have to do with me?
One more time (though I recognize the futility of pouring words on deaf eyes [yes, that was an intentional mixed metaphor])...cluster headache is a very specific disorder..not a 'family' of disorders, not a 'catchall category' for lazy docs, not the country club's "Hypochondriac's Choice of the Month". Don't ask me, ask Carld, and sailpappy and Elaine and drummer and Ueli and all the other (true) chronics out there. If clusters haven't taken your life (at least significant pieces of it, in the case of episodics) and turned it totally upside down; if you haven't seriously contemplated suicide more than once; if you haven't tried med after med after med in a nearly futile attempt to find one that works; if you haven't been brought to your knees (or worse) with a pain that makes unmedicated childbirth and voluntary amputation pale by comparison, you need to get a second opinion. The pain of cluster is indescribable, and a lot of people think I communicate fairly well with the written word.
When a clusterhead says he/she has thought about 'ripping my face off', they aren't engaging in hyperbole. They have reached up to the afflicted side of their head and dug their fingernails into the skin. Hours later, they still show the marks.
When they speak of pacing during an attack, they refer to walking endlessly, heedless of all danger, until they literally cannot take another step, and yet they do. To stop is unthinkable, and so the legs and back and feet will just have to suffer, because nothing they can feel will approach that which they must fight.
The children of clusterheads occasionally post. Invariably, they speak of the pain in their hearts when they have to watch or listen to Dad or Mom endure the onslaught of the Demon. They don't mention the difficulty of staying awake in school the day after they got but a few hours sleep, due to laying awake in bed half the night, listening to their loved parent scream in agony. Interestingly, I don't recall a single post from the child or spouse of a tension headache sufferer.
Yes, Elaine, we've lost many friends, and many of them had much to offer us. Sadly, I understand all too well their frustration. You once said that you were glad to be chronic, because you didn't think you could handle the periods of remission an episodic has, always knowing that it was just temporary. The hope/despair cycle is the penalty episodics pay for remissive periods, while the constant assault is the penalty chronic's pay.
The penalty we all have paid here is much like that of the episodics...a 'remission' when we found this fabulous site filled with fellow clusterheads, dashed by a 'cycle' when other headache sufferers discovered us and jumped on board, despite not having this disorder.
Each must do what they feel most comfortable with. Personally, I'm going on to E-bay. As popular as clusters seem to have become, I think I can auction mine off and not only rid myself of the Demon, but make a nice little piece of change in the process.
But you, dear Elaine, had nothing to do with any of it.
KTSSU,
T