I could really use a narcolepsy friend these days. How long is it going to take until I feel better? From reading these forums, which are a god send, I know the consensus it that it takes a while to find the right "cocktail" and everyone is different, but how long did it take all of you, on average, to find it? I have Narcolepsy with EDS, sleep latency is 2, SOREMS is 4 and I have anxiety disorder (which I feel might dissipate if I ever get my sleep under control). Below is a brief synopsis of my journey so far:
- 1st try was 250 mg of Nuvigil once daily - I stopped after four days, I was really angry and anxious and experienced mania
- 2 was concerta - this had no effect, positive or negative. Even after I doubled the dosage
- 3 was 50 mg of Nuvigil twice daily - it took longer but the same side effects crept up
- At 4, I decided to try natural. I did a bunch of research on vitamins and herbs and was taking about 15 different ones a day, this did almost nothing sadly.
- 5 was Xyrem starting at 2.25 twice daily and increasing .75 each week - I wet the bed once at 3.75 and once at 4.5 and that was it for me
- At this point my sleep doctor said we exhausted all the options...I called BS and found a new doctor
- New doc wants me at 2.25 twice a night for a month and 5mg of Ritalin twice daily as needed. So far on this, I have mostly slept through the second dose. I started using a loud alarm for my second dose and put it in another room which has been working but it also wakes up my boyfriend which I think stinks. The Ritalin gives me a tiny bit of energy, but it is minimal and lasts only about two hours. This has been going on roughly two weeks, though I did take a few nights off from the Xyrem.
I am at the end of my rope here. I am so tired of being tired and the therapies have really drastic side effects. I don't know how much more I can take...This consumes me every single day almost every moment of the day.
How far away is the light at the end of this exhausting tunnel?