Sleep Attacks - narcoleptic or dissociative, maybe both

[RainbowSearchParty]

Just wondering if this is an issue for anyone else, and if anyone has any advice.

I keep having these moments of uncontrollable tiredness where I fall asleep without control. Sitting in a chair in the afternoon, or sometimes when I'm up and moving and it is all I can do to get to a bed or flat surface before I nearly collapse. And then I only sleep for a few minutes, but I always dream, no matter what. It's always happened but had gotten better in recent months as I focused on eating better, sleeping better, exercising more. The normal sleep hygiene. But in the last week I can't see, to control these attacks at all and they are happening nearly daily, sometimes more than once. I know this is in part because I'm on an extended visit with family, which is always hard at best and so triggering, and definitley has me in old patterns of poor sleep hygeine. And there is an emotional component to these attacks, too, as they are more likely to happen when I'm totally overwhelmed.

Years ago I had a doctor suggest that this sounded like narcolepsy, namely because I always start dreaming the moment that I fall asleep (even when it's on purpose, in bed at night). And I don't know for sure, but it feels like I nightmare all night long. I do know that I don't move at all in my sleep: what ever position I fall asleep in is the position I wake up in, with a perfectly made bed still in the morning. But I've also had therapists suggest that this is dissociation, because of the emotional component.

I guess it doesn't really matter, except that depending on what it is there may be different solutions. Any one experience similar, or have any advice on managing these sleep attacks? Ideally I would be able to see a sleep specialist, but things are a bit of a mess in terms of access to health care right now for me, and that won't happen for at least a few years.

 

[Sideways]

I guess it doesn't really matter, except that depending on what it is there may be different solutions.

It does matter - driving is a good example.

Dissociation at high levels is typically pretty safe to drive with. Loads of people become dissociated while they’re driving.

If it’s narcolepsy, you can’t drive until you get it stable on meds because you’re out, sleeping, spontaneously, and are liable to crash.

Definitely worth a sleep specialist.

 

[RainbowSearchParty]

Definitely worth a sleep specialist.

Yeah, I agree. But the country I'm living in has extraordinary wait times for medical procedures, so this is basically never going to happen.

I'm not driving these days, as I live in a city with public transit. So at least that doesn't pose a problem.

It's also just always so complicated with having DID, because I don't always know how to sort out what is parts trying to communicate and what is just a biological illness that has nothing to do with them at all.

 

[Sideways]

I'm living in has extraordinary wait times for medical procedures, so this is basically never going to happen.

This is very fatalistic. It’s worth a trip to the GP, and getting a referral, and getting on a wait list to see a sleep specialist. Even if that takes a few months.

It's also just always so complicated with having DID, because I don't always know how to sort out what is parts trying to communicate

DID doesn’t make you fall asleep spontaneously, so at least that element isn’t really complicating it.

 

[RainbowSearchParty]

This is very fatalistic. It’s worth a trip to the GP, and getting a referral, and getting on a wait list to see a sleep specialist. Even if that takes a few months.

It is a bit fatalistic. I'm working on that. But I'm not sure that it is unrealistic -- currently I'm living abroad, and I not only am unfamiliar with the system, but can't access the normal, governmental care and am working with a sub-par insurance. Wait time for a GP appointment is upwards of four months, and I just get so overwhelmed thinking of it. And the last time I asked for a referral, I was told no, straight up. So I guess I'm feeling overwhelmed at the thought of trying to find a specialist, and maybe secretly hoping for a confirmation that this is just dissociation.

 

[brokenpony]

hmm. sometimes something similar happens to me but not exactly the same. i will go from normal-awake to heavily falling asleep, can’t keep my eyes open, as if i were hit with a tranquilizer dart. seemingly without a trigger. it also doesn’t seem to depend on my sleep habits or hours.

it mostly happens in therapy, also seemingly without a trigger (probably there is one i don’t know yet, maybe delayed reaction). but for a time period it was happening randomly in places it shouldn’t that were dangerous or embarrassing (like driving or in a work meeting). i would pinch myself as hard as i could and have to keep finding new spots to pinch myself because the shock would wear off. in the car i would scream at myself to stay awake and a few times pull over. i did doze once while driving and it was scary. it was truly distressing and i felt helpless. then they just stopped being so frequent.

for me they are not narcoleptic sleep attacks. i believe in those you actually immediately fall asleep, out of nowhere, and this is different for me. i can keep myself awake with a lot of… work. then after some time it passes and i’m normal-awake again.

this was maybe 1-2 years ago that i started having these attacks outside of therapy. my psychiatrist-neurologist didn’t believe it was narcolepsy. he didn’t know what it could be. my therapist thought it was dissociative. i do also have a DID dx. i have a lot of somatoform symptoms that tend to come and go like this (for years i had dissociative seizures/pnes and don’t seem to anymore, they stopped after leaving an abusive household, and i wonder if it was something similarly “functional neurological” here). at the time i think i was experiencing a lot of stress/ptsd aggravating stuff.

but you don’t want to just attribute everything to dissociation or ptsd and miss a big diagnosis. i do think this could be a dissociative response or severe hypoarousal trauma response but just because it can be doesn’t mean it is. one difference here is that you don’t have seem to have control over falling asleep and instantly dream. i could stop myself from falling asleep with a lot of frantic effort. so idk if what we’re experiencing is the same thing.

i have had several long waits for specialist healthcare that turned into short ones due to being on a cancellation list.

 

[RainbowSearchParty]

it mostly happens in therapy, also seemingly without a trigger

This is the same for me. My therapist (when I was actually in therapy) thought that it was in response to a strong emotion -- that before I even could be aware of the emotion, a part took over and just shut everything down. And right now I'm feeling particularly emotionally charged, as I'm dealing with my family -- always a huge stressor. For me, there is definitely an emotional component, but I'm just always wondering if there is a medical component, too.

 

[Tinyflame]

Not sure if this is helpful but what's caused it for me is profound stress/ confrontation and extreme physical (and therefore also emotional) exhaustion.

 

[brokenpony]

Not sure if this is helpful but what's caused it for me is profound stress/ confrontation and extreme physical (and therefore also emotional) exhaustion.

yes i’m pretty sure i was in the middle of an exceptional acute but long-term stressor when this was happening frequently. not physical exhaustion, but possibly it was the inverse, where emotional exhaustion was causing episodes of physical collapse. and now that is more relegated to the therapy room again.

This is the same for me. My therapist (when I was actually in therapy) thought that it was in response to a strong emotion -- that before I even could be aware of the emotion, a part took over and just shut everything down. And right now I'm feeling particularly emotionally charged, as I'm dealing with my family -- always a huge stressor. For me, there is definitely an emotional component, but I'm just always wondering if there is a medical component, too.

yes it is weird because i don’t always understand what has triggered it. i haven’t thought of it as a part shutting things down, more like brain/nervous system shutting down to avoid whatever it has (rightly or wrongly) perceived as a threat but possibly a part is being triggered outside of surface awareness or something like that. or coming forward? i’m still new to the diagnosis and unsure. i just know that i will be awake and then suddenly my eyes will be closing like i have been suddenly sedated. and this is what was happening in my daily life for this period, and now it doesn’t anymore.

 

[AngryGinger]

Just wondering if this is an issue for anyone else, and if anyone has any advice.

I keep having these moments of uncontrollable tiredness where I fall asleep without control. Sitting in a chair in the afternoon, or sometimes when I'm up and moving and it is all I can do to get to a bed or flat surface before I nearly collapse. And then I only sleep for a few minutes, but I always dream, no matter what. It's always happened but had gotten better in recent months as I focused on eating better, sleeping better, exercising more. The normal sleep hygiene. But in the last week I can't see, to control these attacks at all and they are happening nearly daily, sometimes more than once. I know this is in part because I'm on an extended visit with family, which is always hard at best and so triggering, and definitley has me in old patterns of poor sleep hygeine. And there is an emotional component to these attacks, too, as they are more likely to happen when I'm totally overwhelmed.

Years ago I had a doctor suggest that this sounded like narcolepsy, namely because I always start dreaming the moment that I fall asleep (even when it's on purpose, in bed at night). And I don't know for sure, but it feels like I nightmare all night long. I do know that I don't move at all in my sleep: what ever position I fall asleep in is the position I wake up in, with a perfectly made bed still in the morning. But I've also had therapists suggest that this is dissociation, because of the emotional component.

I guess it doesn't really matter, except that depending on what it is there may be different solutions. Any one experience similar, or have any advice on managing these sleep attacks? Ideally I would be able to see a sleep specialist, but things are a bit of a mess in terms of access to health care right now for me, and that won't happen for at least a few years.

Oddly, Ive been going through this as well. I just had a nightime sleep study and daytime sleep study done and get my results in 2 weeks. Pretty sure I have narcolepsy. I slept through all 5 naps on cue.
Even if the appt is 4 months away, it’s better to get it started.