Posted by Brian (188.8.131.52) on January 13, 2002 at 20:42:52:
I am 20yo and have had cluster headaches for five years now. The headaches started out when I was 15yo and were unrellenting for about a year. During this time I was forced to drop out of high school (its very hard to wake up in the morning when you have been up all night with a headache or afraid to go to sleep feering one)and have since recieved my GED and attended community college but have been forced to drop out of college as well for similiar circumstances. I also had headaches during the day that exhibited an odd trait I was able to tell every day what time to expect the headache due to the fact that each day it would come on an hour later. Any way during this first bout I was misdiagnosed twice once as having tension headaches the second as having classic migraine.It was not until I did research on my own that I figured out what these were and at that time approached another doctor who lucky for me happened to be fresh out of med school and very knowlegable about headaches. To make a long story short he was just one of many doctors, specialist and clinics I have been to in the last five years. At one point I had an MRI done that showed I have an enlarged hypothalamus
Which a recent study has shown is standard in all cluster patients. Seeing as how this part of the brain is responsible for regulating the circadian rythym and other cyclic functions this is not suprising. I have tried eighteen different prescription medications in an attempt to abait this devil none of them to much avail. The only things I have found to work somewhat are verapamil and narcotics. O2, DHE NS,worked some of the time for a while but there effectivnes wore off and on top of that it is very dehumanizing and embarising to have to lug around an O2 tank while hanging out with your friends(makes it real hard to meet girls). This brings me to my current dillema. Last february my headaches got so bad that I was considering suicide. I begged my doctor for stadol and when he did not prescribe it I resorted to buying oxycontin on the black market to take care of my pain. The difference it made in my quality of life was amazing. Anyone that suffers from cluster headaches knows that the pain comes on to quickly for oral medication to be effective. So what I would do is crush up the tablets and snort the powder at the first sign of a headache (it sounds bad I know but its better than suicide). The relief was almost instant and would allow me to function in a somewhat normal manner for the durration of the headache. This however presented a problem when my cycle did finaly end I was left dependent on the OC. This was not a problem however until the cost of the OC increased to the point where it was putting a real strain on my finances. I have been able to manage until recently however when I was presented with two problems at once:my headaches return and my mom telling me that unless I quit taking narcotics I would have to find a new place to live. This presents an enourmas problem for me because A.narcotics are the only thing that bring me relief and B.I can't afford to move out of my moms house but I also can't afford to go into a rehab center in the middle of a cycle (no pain relief). On top of it all I can no longer afford to buy narcotics on the black market so I had to endure withdrawls while in the middle of a cycle (talk about hell). So I am at the end of my rope and can once again see no other option but suicide. This is not living it has gotten to the point where I have nothig to look forword to but suffering for five years now a quarter of my life I have dealt with doctors telling me try this, give it time. While I am sick of waiting and out of time and do not see any other option but the apparent one. Any ideas would be much appreciated.
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