2 replies to this topic

[roned]

I have only been diagnosed since September although I have been to several phsyicians trying to find out what is wrong with me for over 15 years. I have been told countless times that there was no medical reason for how I felt so therefore it must be psychological and was thrown several brands of depression or anxiety medications which were of little or no help at all. I happened to go to a sleep clinic after a discussion with my girlfriend over the problems we were having sleeping and daytime discomfort. Narcolepsy was confirmed by a blood test and observation. I also suffer from chronic insomnia. I am on the edge. Cataplexy almost forced me onto the freeway in rush hour traffic as I pulled over to the side of the road to close my back car door and struggled to maintain my balance. I'm irritable, in pain, lack concentration and focus; in general I horrendous most of the time.

I was prescribed Provigil of which I see no real improvement and just recently prescribed Xyrem (2 days). Day one was better than day 2, allowed me to sleep for 4 hours with no problem. I was anticipating day 2 (maybe I could get a good sleep) unfortunately I only slept for 3 hours took my second dose and I never went to sleep after that. To make a bad situation worse I was extremely dizzy, fell off the bed, and realized I need a diaper at night. I spent the remainder of the early morning with a severe headache, vomiting and frequent trips to the bathroom. I was an hour late for work because I felt so bad, although I was up since 2 a.m.

I am grateful for the diagnosis and treatment. I appreciate the attention the nurses and pharmacists at Xyrem give the patients, they check in from time to time to see how the program is working. Although last night was horrendous I will continue the treatment and pray it works and the side effects dissipates. I need to believe that feelings of normalcy are in my future. Had I been diagnosed properly earlier maybe I wouldn't be feeling so bad so long.

[greatbig47]

Hey Roned!

Sorry no one replied to your post until now. Sounds like you've been through a lot!

Still trying the xyrem? Did it get any easier? I've been thinking about trying it so your point of view is good to hear (athough every one is different!).

VERY best of luck, Man...Hit me back!

-Stu

[eldestpenguin]

Hi! I have both empathy and sympathy for your position. I have struggled with something for 14 years; it has been a long, hard road. I ignored it at first. Eventually, I sought help. I was crazy. I got extremely sick. I was tested for Multiple Sclerosis. The MRI showed nothing. I was crazy again. I would get sick again, tested for MS again. This went on for about 3 years in the process. I was finally given Provigil and Neurontin; this improved the quality of my life greatly. I carry the diagnosis of Fibromyalgia, as they have to name a reason for the meds. Nobody believes that I actually have Fibromyalgia. Now, they are looking at Narcolepsy. I agree with you; I need a correct diagnosis. I don't even care what I have, but I want to know what it is. I have not been diagnosed with Narcolepsy yet. I have had the panel; it was positive. I am supposed to have a MSLT soon. Even if I am diagnosed with Narcolepsy, I don't know that I will feel confident that it is accurate. There are no words to explain the frustration of living with something unknown this long. I am sure that there is far more to your story than your brief post. I would love to hear it if you are willing to share.