Posted by Dale W. Key (204.119.61.57) on March 11, 2000 at 23:46:54:
I received a note from Bennie Sue today asking that I post my story, so here it is.
I first started having clusters when I was 12 years old, it seems that back in those days they were not as bad, maybe because I was young I could handle the pain better. I haven't done so well in later years with the pain.
My pain is always on the left side, starts behind the eye and then into the cheek, back to the ear, down the back of the neck and if it really gets going it goes into the shoulder.When it is really bad my eye swells shut, my ear swells shut and the Carotid Artery gets like a boil, the tissue on the left side of my head gets spongy to touch. Many has been the time that I thought about the "S" word to stop the pain.
I have found very little medication that will controll the pain, some are "SANSERT" amd "PREDNSONE" both of these have such serious side effects that I don't use them anymore. My best defense has ben OXYGEN at the rate of 6 to 8 liters with a tight fitting mask. Tne nasel tube apperatus doesn't work because of the plugging of the nostril. I use over the counter pain meds and Vicodin fwhen I can get the Doctor to prescribe it. LITHIAM three time a day seems to slow the number of headaches per day maybe.Thats all the medication I take except a trip to the Emergency room for a shot now and then.
I tried "IMATREX" injections two times without result other meds, "WIGRAIN, ERGOTOMINE" preperations have become allergic to my system so those are out.
When I was about 35 years old I had all my teath pulled because the Doctor thought it might help, let me tell you that it had no effect on the headaches. I was put on Prednesone in the very early 80's at the rate of 80mg day for a year and it controlled the pain most of the time. However I had every side effect associated with the medication. I don't recomend this to anyone except for short term use.
I have just changed Doctors because the one I have had for 12 years retired, one of the worst things with these headaches is finding a Doctor that really understands how to treat Cluster headaches. I already know that this doctor isn't the right one, it seems that most of the doctors are afraid to prescribe pain relivers, let me just say this, I have taken pain medication for these headaches for almost 50 years and I not hooked on these things yet.
My wife of 42 years has been very supportive and understanding, I don't know what I would have done without her.
My fathers side of the family all had Migrain headaches, a first cousin has Clusters, my son has clusters and his son of 12 is either having Clusters or Migrains, I hope a cure is found soon.
This story could go on to become a book if I told you about the Mini Strokes, the double vision problems, the joint problems all caused from medictions that I have taken.
If I can be of any help to anyone out there please drop me a note.
Dale W. Key
Stayton, OR