Posted by NickD (126.96.36.199) on April 08, 2001 at 10:36:54:
In Reply to: Never went to the ER posted by Ted on April 08, 2001 at 09:10:27:
can happen with improper care, I was touched my Janies post below where she was treated like a nut case with CH's due to ignorant doctors then put on a ton on contraindication medications, my neuro at that time did the same to me and also sent me to the pych ward to learn to deal with the pain, I put my trust in their judgement and was popping pills like an idiot, should mention that both my doctors were canned from the clinic. Besides, the CH's had severe reactions to the many drugs I was on topped off my a contaminated O2 tank, call it luck, but the pain was unbelievable, red hot spikes in both eyes shooting back to both ears, all 32 teeth in severe toothache pain, was weak and dizzy with a tight chest due to the verapamil, half out of my mind with the Xanax, could barely walk with the egostats and the pains were excruiating was going on 48 hours without sleep, fortunately I met a new neuro that was just hired and he had an absolute shit fit when he saw what I was on, he promised to hold my hand, but said I would have to go through a 2 week dry out period, this was 17 years ago, since then, I have been very cautious on any new medications, my bout with imitrex was bad, but I went a week dry before trying it, had this strange idea that some medication would cure these things once and for all, but I was able to deal with the bad reaction of the imitrex and at my doctors request, tried it a second and third time, same effects. Now I am very anti-medications taking an occasional prednisone and amitriptyline, the drug companies would go broke with patients like me, I rely on my O2 concentrator and if that doesn't break it in 20 minutes, will grab my dog and drive 30 miles to the north to a federal reserve area and walk it off, that always works, but in general, my clusters have been managable since I virtually quit the med route, I tried some new drug a year ago and felt like I was crawling out of my skin, could look in my drawer to recall the name, but didn't stay on it like I did before, called my doc and said no way.
My last major bout with cluster was about 3 years ago, former Pres. Ford, Kissinger, and Laird were flying into town and the airports ILS crapped out, had the clinic putting pressure on the mayor, city council, and airport manager that in turn got on my back to fix the darn thing, didn't want to, the field was rented out to a farmer and he just dumped liquid manure, a well known trigger to me, I got the darn thing fixed but started a severe cycle, this time, no meds, no ER, just grabbed my dog and went up north, seems to take a month or more to get that crap out of my system, normally I avoid the known triggers (have fun August if you are reading this) and can function.
Just sharing some of my bad experiences and lessons with others, take it for what it is worth, a true miracle would be meeting a doctor that suffers from CH's or Crohn's and knows how to treat it. As bad as you think CH's are, they can be a lot worse if you are on the wrong medications, even worse if the medications contradict, you yourself have to do the research and learn what works for you. This board has been very helpful in this respect, wish it were around 17 years ago, but that is part of progress.
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