Main » March 2005

March 5, 2005

Still Narcoleptic

It's been so long since I've been here last. I've been so busy using my little spurts of time to try and get things done around here...yet they never seem to be finished, lol. I've been having some tough days this winter. After almost six years of chronic and undiagnosed muscle pain along with five of those years suffering like hell with the crappy medication treatments for Narcolepsy (pain surfaced upon first beginning medication treatment for Narcolepsy), it took one final doc (of many) to check my trigger points for fibromyalgia. (which were positive) I'm so pissed yet so relieved at the same time. It was left untreated all of this time as a result of nothing showing up in any of the many bloodworks that were ordered by multiple docs. My stupid sleep doc has suggested at times that the pain I suffered with might be "psychological" as a result. I never once conceded to that and I'm so damned glad I was stubborn enough not to. I was in agony, and those medications that I could not tolerate time and again only made it worse. I don't know if this crap will ever go away now. Sometimes I just want to curl up and die in my sleep just for relief. Then again, I wouldn't want to leave my kids like that. I guess that's where my "mysterious" high blood pressure that surfaced along with the pain upon beginning med treatment for Narcolepsy came from. I'm thankful for some of the relief I am finally getting now as I take these pain meds...as well as a steadily decreasing blood pressure. I just wish they worked better and lasted longer. Med adjustments are not finished yet though. I'm hoping that by the time they are finished, I won't have to waste my money any more on blood pressure pills that I wouldn't have needed in the first place if my complaints of pain were taken a little more seriously....correction...a lot more seriously. I'm so pissed...sorry I have to vent. Sooooo...at this time I still continue to take selegeline twice a day for the Narcolepsy and xyrem at night for cataplexy. I guess I won't know how effective each of those meds truly are until the fm is more under control. Who knows? Maybe the N isn't as bad as first thought..some of this crap could be the FM....only time and appropriate treatment shall tell. Until then...

Posted by Lis at 3:59 PM | Comments (3)