Posted by Geoff (206.18.113.67) on June 12, 1999 at 20:39:06:
Well guess what Rodney, I have HIV too and I have had cluster migraines for eighteen years. HIV for thirteen of those. So you think we are a bunch of whiny assholes? Look buddy, you don't have a clue what disability is until you have gone through a ten week cluster of non-stop pain. My clusters started in 1981 and have continued on a regular basis (episodic, usually every eighteen months or so) since then. They have been totally incapacitating. I have done all of the preventive stuff such as O2, tricyclics, Migranal, ergotamine etc. Guess what buddy. Some of the "life saving" medication that I am on right now (Protease Inhibitors) restrict me from using any vasoconstrictors such as Migranal or Imitrex. The only thing I can do when the cluster starts now is to go to the ER and get demerol shots. Been there done that with all of the other prophylaxis stuff. It has only been since January of this year that the last cluster ceased and I am getting the aura that another cluster is about to begin. Im scared to death...as I don't know if I can go through this again. Tell me something else buddy. To all of the other people reading this, feel free to email me. Like I said, I am getting the sense that the cluster is coming back and the last one had a ten week duration. Can't even begin to go into that in this post...but I was ready to throw in the towel. I could use some support now so if anyone else wants to write, please feel free to do so. I need some friends who have gone through this stuff. No one else seems to know the extreme pain except another Cluster Headache person. HELP!