Does this sound like narcolepsy?
Hi. 32YO male. Around one year ago, I suddenly started developing some weird symptoms where I kept randomly passing out during the day. I felt like I weighed 1000 pounds are, and throughout the day I felt so disoriented it was worse than being drunk. At the time I was also experiencing some G.I. symptoms so the doctor did an ultrasound and said they thought they found a blood clot in my liver. Eventually I went to CT and they said it was gone or was never there in the first place. Even though my symptoms were persisting, the doctor basically said we don’t know, and that was the end of their involvement.
For a month or two the symptoms seem to lighten up quite a bit but still, we’re definitely present
A couple weeks ago I experienced a terrifying event, where I was laying supine, watching TV, unable to sleep, and I suddenly started having loud snoring respirations like sleep apnea and couldn’t move while I was completely awake.
The next day I started googling around and discovered sleep paralysis/cataplexy which let me down the narcolepsy route. After going down the rabbit hole with hours of seminars on YouTube and reading, I felt kind of silly for never considering this before because it sounds pretty similar. Also, I’ve had a handful of TBI‘s, which I guess can cause the same affect on the Orexin.
I’ve gone multiple days with only three or four hours of sleep, where I am wide awake at night, despite being completely deprived of sleep. I have also gone multiple days with 8+ hours of sleep and still experienced sleep attacks during the day.
When they hit me, it feels like someone has a rope attached to the back of my head and is pulling it down unless I actively fighting by moving around. I will pass out within seconds. As far as I know, I haven’t experienced any other cataplexy outside possibly that sleep event.
I may have experienced some automatic behaviors during school in tutoring when I start scribbling something on homework and then don’t know what I just did, but it’s hard to know if that’s really what’s happening because I am so disoriented trying to fight a sleep attack.
I only have VA medical care which is absolutely terrible. Most of the time I find myself having to do the doctors homework myself.
The only thing that makes me think this may not be narcolepsy when I pass out it does not seem like deep REM sleep to me. And I’m still aware somewhat of my surroundings to the point I can tell my respirations immediately change when I sleep, and can typically pull myself out of it. However, if I pull myself out of it before my brain has “RESET” I will be extremely disoriented until I finish. I’ve noticed a few times despite feeling like I’m semi aware of my surroundings, my eyes have felt like they are darting around in my eyelids. Can I be experiencing REM sleep well consciously aware of it?
Thoughts or advice? This would really screw up everything career wise I worked hard for years to achieve. This is debilitating and I keep getting “of course you’re tired and falling asleep, you’re in a tough school program.” But I was in the military and experienced severe sleep deprivation along with many other extremely challenging things, and this is nowhere near the same feeling.
Ended up going to the ER. Labs were normal, no clot. EKG was fine.
It’s going to be probably quite a while before I get an MSLT if I even can convince them
In the meantime, I’m really just curious if people can still be semi-alert when they are having a narcolepsy nap, or if this sounds nothing like one.
When I racked out today, I rested my fingertips on my eyeballs. I could definitely feel my eyes darting around like REM. Is it even possible to be alert enough to feel that if you’re in actual REM sleep??
Hi
. It is possible. There is a state of sleep often experienced by people with narcolepsy (and sometimes by people who do not have sleep disorders) called lucid dreaming. Lucid dreaming is a type of dreaming in which you are aware that you are dreaming. You might even feel like you are awake and that what happens in the dream is real. Some people find it scary while others learn to manipulate the dreams to better control the outcomes. Lucid dreamers, and people with narcolepsy in general, are often very creative people. I am glad you went to the ER even though they found nothing. It's always best to play it safe. Keep in mind that a normal EKG does not rule out cardiac issues. It is simply one perspective of your heart health. Don't let those finding stop you from going to the ER again in the future if ever you feel at risk. I hope you are able to get that sleep study and see a specialist soon. I'm am sure you are more than ready for answers. - Lori (Team Member)
Hi
. It is tough when you have to work within the VA system. My heart goes out to you. It sounds like you would benefit from a visit to a sleep specialist, preferably one who is also a neurologist. What you are experiencing could be narcolepsy with cataplexy or it might be something entirely different, like a circulatory issue. We are not medical experts, so it is hard to say. Whether you are dealing with the VA or private health care, you really, really have to advocate for yourself to get answers. The VA does have sleep specialists on staff, so please push to get an appointment with one even if you have to travel a bit. You might also benefit from a full cardiac workup, especially since you have had previous TBIs. Don't let your doctors give up on you. Something is wrong and you know it. Go with your gut and push for those answers. Thank you so much for your service. Wishing you the best. - Lori (Team Member)
