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        New Message Board Archives >> 2004 Posts >> Misery loves company
        
(Message started by: Jabeen on Jan 10^th, 2004, 9:07am)

Title: Misery loves company
Post by Jabeen on Jan 10^th, 2004, 9:07am

Hi all and Happy New Year. I haven't been around much-long story...but I frequently check out posts. Anyway-to try and make this short- my story began about 8 years ago when I, after 45 years on this earth, I got cluster headaches out of nowhere. Between the months it took to find out what I had and the cycles of ineffective meds, I finally found something that worked for me and then a few months later they stopped(I'd say the whole ordeal took about a year). I then floated through the next 5 years without the miserable things and hoped they were gone for good...but no! They reappeared on the other side-but this time I immediately went onto the same med I had last time-it worked (not as well) but in the sense that they were not as frequent or as intense, but they did not go away. The thing is now, that after 2 years, I still have them BUT they only come about once every 2 weeks, only one a night and it is about a Kip 6 or so. I do realize that many of you would die for this "schedule" and pain level-I am not "complaining" but my question is that I wanted to know if anyone else out there has this type of CH?? My last round I used to get them several times a week, several times a night and they were Kip 8's or so- so this is better. But it is still frustrating and odd- I feel neither chronic nor episodic at the moment. Anyone out there have this experience-for how long? I know your experience may not be mine, but I am curious.
Jabeen in Jersey :) :) :)

Title: Re: Misery loves company
Post by Bob_Johnson on Jan 10^th, 2004, 9:37am

It appears to be a not uncommon experience to have the site and intensity of your pain change over time. It took my clusters about 5-years to decide where they wanted to set up housekeeping--wandering from spot to spot around my head.

Both reports here and medical literature make it clear that many folks have the frustrating experience of a med stopping being effective. It's just one of those things we have to accept and start another round of trials to find a replacement.

One of the major sources of confusion/frustration are people who read a medical description of cluster and then assume their experience must be that way or something is amiss. Helpful to understand that the book description of any disorder is sort of an "ideal" model. Much of the difficulty in making a diagnosis and/or getting the most effective treatment arises because of this variation. Some folks here still have a problem accepting that one can have elements of both cluster and migraine in their personal experience. But it's also a subtle variation which can mislead the physician.

Patience and tolerance are as important to survival as good medicine.

Title: Re: Misery loves company
Post by roger-uk on Jan 12^th, 2004, 12:25pm

hope you get better soon, i have had them for over 30 years allways in the fall and for around 2 months with 6 to 9 attacks a day mainly at night, the hardest thing i find is it spoils your social life and trying to get friends to understand its not a headace, i have find this site only today i thought i was the only one with this problem but its realy helped to have other peaple who understand, in the uk the doctors just seem to think that its a headace, we cannot buy drugs over the counter they have to be given by doctors and they only give tablets out at the rate of 6 a time per fortnight, as you know thats no good, could uses them in one night, take care all the best roger-uk