I have narcolepsy and I am starting Xyrem this coming week. It's supposed to be the ONE drug that hits Narcolepsy in the bullseye.

I've heard lots of people with Narcolepsy claim that after getting it under wraps their mental illness either drastically reduced or went away. It's a neurological disorder, so it's understandable to say the least. I just wonder how many people out there, like me actually have narcolepsy and are spending their lives not ever getting better from their mental illness, because they aren't treating their narcolepsy. For years I was told my tiredness was just "depression". And all the weird body sensations were anxiety. And the lack of attention span was ADHD and after getting stimulants for ADD I was suddenly bipolar, because I would have energy and after the stimulants wore off I would drop and not be able to speak very much and I appeared very depressed when I am actually tired. People always say to me "why do you look sad" and "smile more" even when I'm not upset. I just cannot hold a smile with my muscles when I am fighting a sleep attack. It's a very misunderstood illness. They say it takes an average of 7-8 years to diagnose a Narcolepsy case, for onset of it. It took 6 for me and it was only because I started having cataplexy and they seriously questioned why I would collapse suddenly. But not all narcoleptics have cataplexy and so that makes it even hard to diagnose.

Mine started as young as 16. I remember suddenly I couldn't keep my grades up. I went from distinguished student to barely graduating highschool. I would sleep right through my class after lunch and could never figure out why. When I got put on Concerta for supposed "ADD" my grades skyrocketed for that marking period. I went from 2 straight Fs in calculus to an A. Before it was determined I was just depressed, put on anti depressents and taken off the concerta and I ended my calculus class with another F. I barely walked across stage. My English teacher wanted to keep me back for 5 points. And the fact that "I missed too much school". It was funny to say the least because the years previous to my narcolepsy I would strive for perfect attendance and usually always hit it. I still have nightmares about not graduating and it's been 5 years!

So it was easy to just "pin" it on depression. Or the meds I was taking for it. Of course I don't doubt that I have issues with my mental health. I just think that the fact that I've spent years in a daze and never responding to any treatment has in large, been due to the narcolepsy. And after it's taken care of it, it will be much easier to work on mental illness.

I really hope that the Xyrem works for me as all the other treatments didn't. The ones that cover up the symptoms. Stimulants. Ritalin, concerta, adderall. Provigil, Nuvigil. I am crossing my fingers.

can you cross yours for me too?

[slinks]

I will keep you in my thoughts and I hope the best for you!

[tohelpafriend]

Yes, I hope the new meds work for you, too. I've often wondered about the tiredness and depression, or if something else neurological was going on. My therapist suggested I see a neurologist, which I will, in June, so I'll ask them about that.

I agree several neurological conditions get categorized as depression, and changing meds hasn't helped for me. I've been on Paxil and feel terrible; then stop it and I get motivated to do short tasks, then have to rest.

There are also, I've read, DNA and other tests for people who have treatment resistant depression, or TRD.

Have a great weekend.