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 on March 5, 2005 3:59 PM
Just trying to do some research because my wife has narcolepsy and it's tough for me to understand what she's going through. She's same age as you and also not tolerating her meds well at all. Lost a lot of weight and it's like a spiraling effect. Feeling worse and worse.
This test for FM. Did you request it? What prompted the Dr to check for it? Part of the problem with docs is that if you find something out online, etc... they don't like you telling them how to 'practice'. So they discount the things you may suggest.
Thanks for your site. Hope you feel better every day.
k.
Posted by: k. at April 15, 2005 2:07 AM
I too have narcolepsy and suffer daily...not only from the narcolepsy and my other medical problems but also because no one in my life or around me understands what life is like for me. Everyone insists that I normal and that I'm just lazy and over-exagerating my symptoms. I have no one ! I also know that narcolepsy is a genetic disorder and the thought of one of my three children having to suffer the way that I am is tearing me up inside. I told my parents " If you knew before I was born that I was going to end up this way...I hope you would have loved me enough to terminate the pregnancy!" I know If My narcolepsy had started before I had children I probably wouln't have had them. It's not fair to me or to them. I can't paly with my children... I can't take care of them. They don't even live with me and are split up in three different homes but all with family!
Posted by: Shelby at April 12, 2006 12:29 PM
I have 33 in PA with Narcolepsy as well. Oh the conversations we could have LOL!
Posted by: Terri at March 19, 2009 4:54 PM