Coincidence or Mind over Cluster?

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Posted by Todd ( on August 29, 2001 at 10:17:50:

In Reply to: looks like the magnet thingy was coincidence after all..... posted by Robin on August 29, 2001 at 05:53:06:

Hi Robin-

I have to compliment you on the way you handled this whole issue. For starters, you didn't even post until you'd had two painfree nights in a row. I can only assume that you were ecstatic after the first night but managed to control your enthusiasm and give it another trial. Admirable.

When you did post, you didn't declare a breakthrough cure, but posted with the honest declaration that you didn't know if it was "real" or a coincidence.

This latest post implies that you got hit again last night - for that you have my empathy.

But taken together, your posts raise an interesting subject - to what extent do we "control" the frequency/severity of attacks?

It has long been known that patients with a positive attitude have much higher and generally faster recovery rates from a broad spectrum of illnesses. In contrast, there are actually studies into voodoo that seem to demonstrate that people have died after having a curse placed on them. The theory is that the victim "thought" or "believed" themselves into death. Whatever the explanations, it seems rather clear that we can influence our health by our thoughts and beliefs.

So, now what? I'm certainly NOT saying that all we have to do is "don't worry, be happy" and the Demon will say "Rats - now I have to go find some miserable SOB to torment".

Rather, I think there are several lessons we should consider. First, hope/belief/attitude such as you likely felt upon getting the magnet mattress may very well provide at least temporary relief. This is a two-edged sword - the upside being the relief, the downside being the likelihood of someone discovering the "cure", if only for themselves. Unfortunately, these cures rarely work next time around.

From my way of thinking, the more important issue is just how much CAN we affect our cycles/attacks? I mean no disrespect or putdown to anyone in this next statement. I just think it's something we should consider:

Many of the most positive "I refuse to let the Demon control my life" posters here are also the ones with the longest remissions, or the chronics with the fewest attacks. Conversely, many of the posters who struggle with keeping a positive attitude seem to be among the longest and hardest hit.

FLAW in this idea! Here we hit upon a chicken/egg thing - does the seemingly more positive attitude help beat back the Demon or do the Demon's dasterdly deeds upon the worst hit cause them to have less-positive attitudes?

It is certainly much, much more difficult to keep a positive attitude when getting trounced five or six times a day for years on end. Like most episodics, I'm thankful every day that I haven't had to be tested in that way. But I'm wondering if there is a self-fulfilling spiral at work here - get hit, hard and often -- start feeling angry/depressed/overwhelmed -- lack of positive attitude causes more/harder attacks -- attitude (understandably) worsens -- and on and on it goes.

Now toss in the difficulties almost all of us have finding the med combos and doses that work for us. Try med A - no help. Try B - no help, etc, etc. Wouldn't take too long for most of us to conclude that nothing will work, right? If we convince ourselves that nothing will work, what are the odds that the next med cocktail will work? At the least, I'd have to think they are lessened.

Okay, assume for a moment that there is some validity to this theory. So what? We surely can't eliminate clusters just by reminding ourselves to "be happy" any more than drinking Mike's Hard Lemonade will let you ignore that rebar through your torso.

Perhaps, though, those sufferers who are having the most difficulty finding relief aren't receiving proper medical assistance. Is it possible that many of us would benefit from counselling aimed at improving coping skills? (In addition to CH meds, of course) Do we need a more "holistic" approach to treatment?

Take a look back over the post archives. There are numerous examples of people who went on vacation, got married, whatever during a cycle or while chronic. Many have posted with glee how they escaped the Demon's grasp during the entire honeymoon/whatever, or went from chronic with multiple attacks per day to one or two hits over a week or two. Coincidence?

I don't have any answers and I'm not even advocating this theory. Just thought I'd toss it out there for consideration and comment.


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