Hi, I've been trying to read up on the subject myself, but there's a lot of conflicting information on the web, so thought it would be helpful to get some advice on the matter on a forum such as this.
I've had a health issue for the last 20 or so years. I was diagnosed with CFS about 12 years ago. The diagnoses of CFS is an unsatisfactory process, no diagnostic test exists, and I know many with it who have subsequently been found to be suffering from something else entirely.
When initially trying to understand my illness, I felt narcolepsy stood out, but I ruled it out because I understood its main symptom appeared to be sudden episodes of cataplexy - something I've never had. But recent events caused me to re-investigate the issue, and I've read it's possible to have narcolepsy without cataplexy.
I'll try and summarise my symptoms and history and hopefully avoid being overly verbose.
1) Began with no obvious cause - some speculation of infection/virus may have been involved in it both initially and during a major relapse, perhaps stress as well, but nothing definite.
2) Has fluctuated, I've had periods of improvement, followed by relapses. Can narcolepsy follow this pattern or is there a consistency to it?
3) Sleep problems - varying from a total inability to sleep for a day or more at a time, a difficulty staying asleep, and and difficulty recovering from have been asleep. Since the onset of my ill health I, to varying degrees, have had a lot of trouble properly waking up, which no amount of coffee guzzling can seem to help with, and can last half the day.
4) Hynogogic Hallucinations - had an isolated one before I felt the onset of any illness - visual. On the point of going to sleep. a man dressed in black broke into my window and was about to attack me (no such thing happened of course). They became pretty frequent after the definitive onset of ill health. Mostly auditory, though some physical sensations as well - I once felt my body being sucked into the middle of my bed at the point of sleep. They subsided when I experienced a period of improvement in my health, and began to recur again following a major relapse about 12 or 13 years ago.
5) Sleep paralysis - These became a particular problem after I suffered the major relapse mentioned above. There was a particular recurrent episode I had countless times, initially it began like a hypnogogic hallucination - which I was able to "catch" sometimes and prevent it continuing.. But if I didn't, it would continue and became an extended nightmare, where I was conscious but asleep, and I began - this may sound bizarre - to levitate above my bed, and my body began to start rapidly rotating around in all kinds of implausible ways. I felt the sickness and even pain associated with such physical contortions - I was aware of what was going on and desperately trying to snap out of it. I was aware it was not real... but yet at the same time it felt entirely real. I'd say they went on for 15 minutes, 30 maybe or more. It's difficult to say.
6) Fatigue and brain fog. My complete lack of energy and the brain fog I experience - constantly to a varying degree for last 20 years - is what led to my diagnoses of CFS .(That and the muscle pain I experience, particularly in my legs.) It was even there during my longest period of remission. But it was more manageable then. It has always been the case that my energy and mental alertness have increased notably towards the end of the day, even to the point of feeling somewhat hyper, with a million different thoughts going through my head.
7) Seizure - This happened out of the blue recently. It lasted between 6-8 minutes said the person who witnessed it. It was a full on tonic-clonic seizure. I had an EEG and MRI scan recently and have the follow up appointment later this month - are seizures associated in anyway with narcolepsy?
8) I have an almost constantly feeling of unreality - it's hard to explain. Sometimes I feel like I'm seeing the world through the lens of an old cine film.
Finally, is there a definitive test to determine whether or not I could be suffering from Narcolepsy? I ask this because the fact there isn't for CFS causes doubts in your own mind about what is really wrong with you, and, worse, doubts in other people's mind - about whether you're really ill at all indeed.
Sorry for that being so much longer than I intended and thank you to anyone who took the time to read it all and comments in any way.