When I first saw a neurologist who mentioned they thought I had narcolepsy, they recommended the med xyrem for my sleep issues saying it was the best around for narcolepsy. However it was very tightly regulated & I hadn’t yet been officially diagnosed as I had just been told I may have narcolepsy then. Anyways I moved…was diagnosed…and the different sleep aids my pdoc had been giving me weren’t working so I was like wait I have a doctor for my sleep problems now so I asked my neurologist if he had sleep aid suggestions and he said xyrem was the best med for narcolepsy and sometimes people didn’t even need to be on stimulants anymore once starting it. So I was like awesome lets do it I’m diagnosed and everything and he was like it’s very tightly regulated so hard to get on but I’ll check your insurance to see if you qualify and found my insurance covers it. Then he said let’s try other things first.
This made no sense to me. If I already qualify for the most effective med, why am I being put on meds less likely to work first? This is prolonging the period of time I have to have crap quality sleep. Also I have already tried so many prescribed sleep aids, benzos, trazodone, a number of over the counter stuff, supplements, etc. The new meds he prescribed didn’t work at all and I was frustrated because they function through the same mechanisms as other sleep meds I have tried but didn’t work did so I probably could’ve guessed they wouldn’t work.
I feel like the only reason why he is putting off prescribing the xyrem is because they’d have to fill out a lot of paperwork since it’s regulated, which pisses me off. You’re prolonging my suffering & putting me at risk for my symptoms acting up constantly because you don’t want to fill out paperwork.
Right now I’m on seroquel for sleep. Seroquel puts me to sleep but doesn’t keep me asleep, I wake up constantly and am definitely not sleeping efficiently as I feel very tired upon waking up until I take my modafinil. Also it gives me incredibly vivid dreams which is a ticking time bomb for me as in the past when I’ve had vivid dreams they either make me depressed (because they are good & so much better than reality) or send me into psychosis because I confuse them for reality or they are terrifying and I stop sleeping and get insomnia. Also seroquel is not something I want to be on forever just because if I can avoid being on an AP long term I will since I know the health issues associated, even if I am on a small dose.
I can use benzos or sometimes the other stuff the neurologist prescribed me to help keep me asleep in addition to the seroquel but they only work temporarily before I gain tolerance leading to a weird constant switching out process & plus why would I want to stay on 2 meds when I could be on one? That is supposed to be the most efficient and could even make it so I don’t even need modafinil anymore? That would be replacing 3 medications for 1.
Instead the neurologists med assistant just says “keep trying” & doesn’t even listen to my messages properly because she didn’t understand that I’d already tried the new med they prescribed.
So so frustrated.
Summary:Neurologist putting off putting me on clinically most effective med for narcolepsy, 90% sure bc he doesn’t want to fill out paperwork for it, I’m sick of being prescribed a bunch of kind of effective or not at all effective intermediate meds that I have to use in combination when I could just be on that one. Feel like doc just isn’t listening to me.