How do you cope?

I am trying to get a picture of what life if like for you guys. I find lack of sleep is the most difficult thing I have to put up with; I have erythromelalgia and often spend nights walking round the kitchen and daytime wanting to sleep but fearing to relax in case it makes the nighttime worse. I am also fearful of dropping off because like some of you have written here I have day and wakeful night hallucination-type ‘daydreams’ which disconcertingly I remember as if they really happened and have difficulty sorting from reality. I can move about during such episodes and worry what I might do without knowing it.

I understand that what you are dealing with day in day out is far more difficult and wonder what is the worst part of Narcolepsy for you and how do you handle it?


I have adapted to the hallucinations, especially the more I understand them. Waking up multiple times a night and feeling as though you are never sleeping, yet you are accused of constantly sleeping is pretty frustrating for me. Sleep attacks are the worst. I know when they are coming more times than not and can generally fight them off until an appropriate time. However, there are times where "N" just takes over and i can do nothing. Mid conversation, sitting in a waiting room, shoot I have even had it happen getting my blood drawn (they thought I passed out until they looked at me medical ID) I just fall asleep. I can't stop it, I don't know how long I will be out and when it is this bad sometimes I am not even aware it is coming. I also have a lot of microsleeps which I preform automatic behaviors during. So basically, my brain has gone into REM sleep and I can even remember dreams a lot of the time, but my body continues to function, not up to par but still functioning. These can happen without warning as well and sometimes I am not even aware they ever happened unless someone tells me.

I know cataplexy can also be very bad for some. By the grace of God, mine started late and is mild right now, only triggered by strong emotional responses. However, my doctor warned me I am at risk for it getting worse now as I am at the right age. I just do my best not to laugh in public anymore, it seems to keep me "on my feet" lol.

I just can’t imagine what cataplexy feels like. I remember as a child having night terrors and desperately trying to move and not being able to but I don’t know if I was really awake or asleep. I have had more surgeries than I can count and my major fear since I have been an adult has been waking up to find the anesthesia not working and me paralysed and unable to tell them. Beyond that I can’t imagine.
If I were now researching my symptoms and looked up only the sleep difficulties, the constant slipping into daydreams after a really bad night, the morning I came downstairs in the morning to find drawers pulled out, a cutlery holder tipped over, obvious stuff moved to strange places and so on, I might stop and wonder whether narcolepsy was a possibility. However these symptoms only started when I was given medication for the myoclonic jerks which accompanied the erythromelalgia.

But going to sleep having blood taken, that was surely a first for the phlebotomist Kristin Lol

Hello Nel,
I think what you might be describing are intense sleep paralysis episodes? Which I have certainly had. And they are quite a trip. I have read some very recent research in recent years suggesting narcolepsy can also be the result of a few things or situations or environments or injections. Perhaps digging around for info on narcolepsy that results from injections of certain kinds ? Mine is genetic and run in my family so I don’t know much about the post-injection narcolepsy.

Cataplexy I am very familiar with and it is quite terrifying. I didn’t have it start until about 10 yrs after narcolepsy began. But it is terrifying. Mine presents in what I think can be best described as the appearance of a grand mal seizure although I have been tested and am not epileptic. Neurologist says it’s just my version of cataplexy. I can’t move for days after an episode. Literally every muscle from my forehead to my toes are on fire for the next few days from the convulsions, sometimes my arms blow out and when I come to they are out of my shoulder sockets and just kinda … Lying there. On the plus side, I became very good at putting them back in heh heh.

I have had one or two cataplectic episodes where my muscles seized & froze head to toe instead of flailing about. For me it has gotten worse over the last 10years but I only usually get them when I’m under great stress. So part of my self care is eliminating stress and stressful people and stressful situations as much as possible. I left career in financial services for a career in massage and now yoga and meditation. And it’s amazing. Kundalini yoga specifically has had a significant & surprisingly consistent positive effect on my excessive sleepiness. I’m not “cured” but I have found a way to boost my energy a bit on days I practice Kundalini. I have been doing the trainings and they have been truly amazing. I highly recommend finding a form of kundalini yoga that works for you for all narcoleptics. One heads up: Kundalini is not your traditional yoga. It’s very very very unique :slight_smile:


Have you read this article ? Someone posted it on here / pls read it as I think by the end of the article, you might find it exceptionally intriguing :slight_smile:


Hello Moonsmiles,

It could be a problem with my iPad which doesn’t always show me what my PC does, but I don’t see an attachment and I would really like to read the article.

I have looked up Kundalini yoga and I can imagine why it helps. Attaching a link in case anyone would like to see what it is about.
No good for me unless I can do it sitting in a chair Lol

Cataplexy sounds as you say quite terrifying. It isn’t always possible to avoid stressful situations but you are clearly doing the best you can to stay calm. I am full of admiration.

Until I volunteered in this site I had no idea that narcolepsy, like my condition, can be an inherited disease or result from many different happenings. I have no real idea where mine came from and decided not to waste my energy trying to work it out. Doctors have ruled out any real nasties and that is good enough for me:)