I was diagnosed with narcolepsy three years ago, and between the doctors and medications I feel I am worse off now than not knowing why I was so tired. The first doctor put me on Xyrem, Ritalin, and Nuvigil. It worked somewhat for about two weeks. When I saw him the next month and explained that I was still pretty tired he upped the Ritalin. I was still falling asleep at work. The doctor said I shouldn't drive until I have a better handle on the narcolepsy. My primary care physician filled out a functionality questionnaire for my employers because my sleep doctor was above the paperwork. I ended up losing my job because in all honesty I was falling asleep on average every thirty minutes or so.
I was the primary bread winner of our house so we ended up on assistance while my husband who hadn't worked in eight years found a job. I in the mean time decided to go to a second sleep doctor to find out if this was what life was going to be. He changed me to Adderal. That helped for about two weeks but then didn't any more. Unfortunately he left and moved to California and the sleep clinic didn't have a reliable doctor so I went to a third sleep doctor. This doctor wanted to do the sleep study all over again which I didn't care about except it stressed out my entire family. He told his receptionist that I was to take all my medications as prescribed. I did so and I napped on two naps and hit rem in 8 minutes on one nap. He said look there you don't have narcolepsy any more it is because you smoke and keep hours that are opposite the circadian rhythm that is causing your tiredness. At this point I am so frustrated by the medicines, the constant exhaustion, the doctors who try to act like gods but fall so short of that.
The doctors themselves have assisted at destroying everything I had worked so hard at getting and caused such heartache. If just one of them would have said hey this is what it is, this is what to expect, and this is as good as it gets kiddo. Instead I got a lot of you will feel like your old self in no time, this drug will work and everything will work out; trust me.
Since all of that the doctor who thinks he cured me or thought I lied about the narcolepsy (even though I have the test to show it) withdrew my scripts for Xyrem and Adderal. My primary doctor keeps doing the Adderal and Nuvigil, but I can't take them as prescribed or I don't sleep well at night at all and I am never hungry. When I do take them as prescribed I am still half asleep all day long anyways. I couldn't tolerate the Xyrem very well at all and the last sleep doctor completely messed up the disability claim I had put in right before we went to appear for the judge.
I don't know if I hate narcolepsy or the doctors who have screwed up my life because they know nothing about it. I am hopeful that my new doctor who is in Denver (three hours away and not a stupid pulmonologist) will have better answers and solutions. I swear though if she tries to do another sleep study on me my head will literally explode because I have a diagnosis just freakin fix it. Sorry for the rant but it has been three years of scrapping bottom and trying to make something of a life out of the pile of crap I was given.
aisforalot aisforalot
41-45, F
Aug 19, 2014