You can live a full and happy life with Narcolepsy Type 1.
How do I know this? Because I went scurrying to a Doctor the minute that I started having cataplexy at age 35. I am now 73.
I used to write on the original Narcolepsy Network and shared many links and thoughts there until they unceremoniously shut it down. It was at a time when Xyrem was the be all and end all of medicines and I wasn't going to touch it after my original meds of Ritalin and Tofranil put me in the worst tailspin of my life. I'm not even sure if this will get published. BUT, not everyone can tolerate Xyrem or even afford it so I want to get the word out there (again) that there is an alternative. Especially now that so many countries have access to legal medical marijuana. Specifically, concentrated Afghani oil. A half a grain of rice worth sublingually (under the tongue) at night just before you get into bed. You won't get high because you're asleep but it is a well studied fact that THC is a REM suppressant and people who have Type 1 Narcolepsy are in REM far too much. So much, in fact, that we hardly ever experience the deep stage of sleep required for basic brain housekeeping so that we can awaken feeling refreshed.
I did not buy the oil for myself, I bought it for my husband who was in the last stages of colon cancer. He decided he wanted to be fully cognizant during his last year of life. So he gifted it to me. He said "try it, I am having great sleeps". So, on November 15th of 2014, I started taking it as described above. I was approaching my 63rd birthday. My hubby was my rock out in the public world. I swear he knew my triggers for cataplexy better than I did and was always there to stop me from hitting the deck. Something startled me on November 30th and I automatically turned to him. Nothing happened. He smiled and said, "You haven't realized it yet". Indeed, I hadn't had an episode of cataplexy in nearly a week but they had just been such an every day occurrence and I certainly wasn't dwelling much on myself while taking care of him. I said "no way" and stopped taking the oil. In another week, I was back to having daily cataplexy. I started taking the oil again and rarely have had cataplexy since December 5th of 2014... unless I stop taking it... and I do that every once in a while just to make sure it really does make a difference.
That story is the best gift my husband ever gave me. I hope it can do the same for you.
I am specifying the cultivar Afghani which is one of the original landrace cannabis strains. It is an Indica as opposed to a Sativa. It may be the terpenes contained in it but I don't know for sure. I only know that it must be full spectrum and extracted with pure alcohol and simmered down to a thick oil. I get it in a syringe and operate the plunger for the small amount that I take.
Others have tried it for cataplexy and it has worked for them too. Up to you to try it or not but I sincerely hope it works. It was a total game changer for me and even helped me deal with the death of my husband. Grief is one emotion that is hell on someone with Cataplexy.
Best Regards,
Maggie Nesbitt (aka Ferret)