I was diagnosed with narcolepsy in 2015 from a MLST in which I slept 4 out of the 5 naps, going into REM sleep for all 4. I do not have cataplexy or hallucinations. For me, the main impact of narcolepsy is being so sleepy and tired during the day that I don't like to participate in activities that sap my energy. Sometimes I take 2-3 hour naps and still feel tired.

So I can relate to your description!

Great question, Sydney. Thank you.

I still haven't bothered with the MSLT because the current treatments are so similar to the bi-polar treatment I was already benefiting from when the Narcolepsy dx started showing up all over my family tree. Whether I actually have it myself, or knot, I need to understand it --at least a little-- in order to be supportive.

If my ifs are in alignment, I have had severe trouble with hypnogogic hallucinations and night terrors. I have sudden sleep attacks that I have wondered might be cataplexy, but I am far from certain. As I understand it, cataplexy (sleep paralysis?) is hard to diagnose because it happens outside the realm of what the MSLT screens for. Ditto for the hypnogogic hallucinations.

I fully understand your fear of the dx, but I continue to be hopeful that we can find our ways past that with open, honest dialogue. Once we get past our own fear of it, maybe we can work our way past the highly inaccurate social stigma.

Hi all

I have not been diagnosed with Narcolepsy (yet). I have read that cataplexy occurs during times of strong emotions such as fear and laughter. In some people the muscles go weak and in the worst scenario they may fall to the floor as if in a faint. However, they are awake and can see and hear but simply cannot move. Sleep paralysis occurs on either falling asleep or waking up. It is said that during dreams our bodies are temporarily paralysed so that we don't act out or dreams. A Narcoleptic may not have cataplexy but suffer from EDS and sleep paralysis. They are two different symptoms of Narcolepsy. This message was really for Arfie as he wasn't sure if cataplexy and sleep paralysis are the same thing. I have Sleep Apnea and use CPAP but am still experiencing very bad daytime sleepiness, microsleeps, and brain fog and i have been looking into Narcolepsy and Hypersomnia, although neither one may be found to be whats causing my problems.

I was diagnosed with narcolepsy in the beginning of 2015. I slept fine over night, but they discovered the narcolepsy during my nap study. I couldn't stay awake. After I was diagnosed, I researched as much as possible and realized I had actually been suffering from this since I was 12 (I am 26 now). I have extreme EDS, but I do not have cataplexy. We fall in the rare percentage of narcoleps that don't have it. It takes me less than 3 minutes to enter Dream state, and I do not stay in a deep sleep for long. Im always waking up. I'm constantly changing dosage and/or medicine. I'm miserable if I don't take my medicine and I feel completely alienated from the world. I have described, shown, and talked with my boyfriend about it but still I get pulled the "you're always tired blah blah blah". It's frustrating not having anyone close to you relate to how you are feeling. Nothing is severely wrong with you; it's just part of the disease that we have. It is absolute hell. I work 2 jobs, one being a kennel worker (which is a lot of physical labor for about 12-13 hours a day), the second is a bartender/server on my half days or off days. EDS kicks my butt more than half the time; especially when driving or after eating, and hits in general between 1pm to 5pm. I have memory loss during the time if I have not taken my medication and still do if it hasn't kicked in yet. I lack so much energy. More than 90% of the time I feel like lead, and just want to sleep for forever. It's okay to be scared, but just know you are not alone in this world. Even when we feel like it.

Thank you so much for all the replies!

Hang in there....dealing with EDS and severe sleep apnea discovered during 2015 my 5-hour lumbar spine fusion surgery. In recovery I kept falling asleep and heart would stop. Previously, I noticed sleep issues like 2008 but attributed that to working 3rd shift. Sometimes I would have to leave work cause I had to sleep...thankfully I was the manager & could explain the absences.

Thankfully my family understands and we do have a good laugh when I fall asleep while their talking or playing games.

Work with ur doctor....