Posted by anonymous (220.127.116.11) on January 25, 2002 at 19:36:13:
i've been dealing with episodic ch for about 25yrs now, my pattern seem circadian related, so my episodes usually occur autumn/winter. for the most part i've avoided doctors over the yrs, since there's no cure. i've used a lot of methods to abort pain, over the years these headaches have become resistant to different methods i've used and recently required me to make doctor visit.
in attempting to get help i've had some of my worst headaches ever! taking all these different vaso-drugs, steroids, anti seizure meds,etc.
i've become very frustrated with doctors experimenting on me with these different drugs that don't work, then i have to run back to doctor and demand/beg for some type of pain killer. this has been the 3rd yr of this mess. i'm tired of being treated like a junkie, tired of condesending doctors incapable of any real empathy for the pain that ch have to deal with. so i've done some reading trying to understand what these doctors have been giving me, since they try so hard to keep you away from pain meds. it actually a catch 22, cuz, addiction is valid concern, but so is death; a lot of these vaso drugs are deadly and these anti seizure, etc drugs that they percribe for ch have some serious potential side effects. a doctor recently prescribed topomax, imitrex, stadol. i start on the topamax, imitrex, they didn't provide relief i had to use the stadol. i stop taking the topomax which can cause permanent blindness according to a recent release by fda. i also also found that perfectly healthy people have died because of imitrex, if you read the lit with imitrex they have a sort of diclaimer that says it's not really for ch. so my deliema is do i risk being a so called junkie for 1,2, maybe 3 months out of the year or risk death of doctor experimentation. i call the doctor tell them i stop taking vaso drugs and could they just prescribe an alternate to stadol just in case cuz the stadol got me past my peak i think;stadol, which is very strong, made me nauseous, and kept me awake, and it's supposed to be 10x stronger than morphine, but it knock headache out. of course their junkie shields went up and they want to prescribe verapmil, the very medicine i've told them caused some of the most intense ch i've ever had, and some type of ergot. forget it!, sorry i asked. i didn't tell them that, but no more experimentation. i just hope i don't have a flare up and i'm grateful that my headaches are episodic.
dam! it must be a miserable experience for the chronic ch who has to deal with these doctors when nothing seem to work except pain killer. and i do understand why the chronic suffer has to/is willing to risk the experimentation syndrome with risky drugs.
well if you made it this far, i'll end my rant with wishes of painlessness you all, and if my season is truly over, then i suspect i'll be angry/frustrated next season, since i've seemed to have settled for being a eposodic "junkie", oh well, so be it, for me eradicating that pain is all that matters, and i don't use pain meds or any other drugs in between season cuz i have no ch pain.
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