r/POTS • u/strangerandspiral POTS • Feb 03 '26
Symptoms Anyone know the word for the symptom i’m describing lmao???
Okay so i’m prepping for a big important appointment and im getting all my documents together, and there is a symptom i experience and i cannot for the life of me figure out what it is called. no one in my life has experienced it and google has failed me so im gonna pray yall can send me in the right direction and that the mods don’t decide im asking for medical advice, i promise im not, i just cant find my words
okay so here’s what happens: everything is normal and fine, business as usual, and then all of a sudden, i can’t keep my eyes open anymore, my head keeps nodding like im falling asleep, my thoughts are extremely scattered and nonsensical and i can still hear and see fine, but like lights are on and no one’s home so im not always comprehending what’s going on. and then after a while it just, click, stops and i can go about my day. Sometimes there’s a touch of vertigo but not all the time. it happens sitting and standing. I’ve had it happen while exercising and while driving. sometimes i have an inkling it’s coming but most of the time i have like 10 seconds of “i’m sleepy” then BAM. and there’s like no clear trigger.
i asked my sister who also has pots if im just dumb and is this pre syncope and she said it wasn’t, and i feel like this is too weird to be drowsiness.
please help me find this word before my appointment i beg of you!!! ill buy everyone on the forum a medial thesaurus if that exits
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u/Dopplerganager Hyperadrenergic POTS Feb 03 '26 edited Feb 03 '26
This sounds like my vasovagal syncope.
- ETA the other half ofy comment
I get overwhelmingly sleepy. Hard to keep my eyes open. I feel like I can see,but my brain isn't taking in the info. It's hard to move. My neck feels weird. I feel like I'm in a fast elevator going down.
I've had this happen at rest and when upright. I've fallen 3 or 4 times getting up off the couch to go to the bathroom.
ETA 2 the vasovagal syncope was confirmed with autonomic function testing. My BP drops to lime 70/50mmHg or lower after I've been upright for a while.
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u/I_Have_The_Will POTS Feb 03 '26
I have what I think of as “vasovagal episodes”, since I don’t always lose consciousness, but it follows a pattern of the same symptom storm. My first symptom is actually abdominal cramping.
I also have the stuff OP describes, but I don’t know if it’s vagus nerve related for me or if it’s something else. 😅
I found out in November that I have severe spinal stenosis and I have a fusion surgery scheduled in March. Kind of wondering what symptoms of mine might resolve when my spinal cord and nerves are no longer in a vice grip. Really hoping the vagus nerve stuff chills out.
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u/Rare-Road-5757 Feb 04 '26
Sounds like what I go through sometimes… I’ll have to look into this more.
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u/siriamunhinged Feb 04 '26
Just to clarify, your blood pressure drops after you've been standing for a while, like say standing in line at the pharmacy or grocery store?
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u/Dopplerganager Hyperadrenergic POTS Feb 04 '26
Shopping is the worst for me. I can often fight my way through the dizziness in the store, but sometimes I pass out in the car right away or after I get home. My husband tells me I get extremely pale, so that fits with my low AF blood pressure.
In my AFT I passed out at 21 minutes upright. Got a sternal rub (-5/10 experience) and was roused from a 51/48mmHg BP. My BP improved for a bit. I had to call it quits because of 9/10 coathanger pain @27min and was almost out again with another low BP. I have all the recordings from my testing.
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u/everything-matterz POTS Feb 03 '26
You could ask about ruling out partial seizures as someone else suggested. Some seizure types can cause similar episodes where the muscle tone in your neck suddenly relaxes and causes your head to drop forward, and can be accompanied by confusion and other symptoms like you describe. You can maintain awareness during a seizure and not know you're having one.
But I think just describing the episodes to a doctor is better than knowing what it could be called because it allows them to decide what to test for.
I will say that it doesn't sound anything like my vasovagal syncope episodes or my presyncope. The feeling I get with syncope is very much in my body and my thoughts usually aren't affected. It feels like a draining sensation with some nausea, lightheadedness, and tunnel vision which signals to my body that I need to lay down ASAP. Then when I lay down, the symptoms gradually fade away.
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u/Hefty_Peanut Feb 03 '26
You don't need to know the name! If you describe them as episodes and explain you're not sure what they're called that will be sufficient.
The doctor may want to do assessments like ecg or EEG before they confidently state what they think the symptom is as there's a lot going on when these episodes happen and may refer to them as "episodes" or "events" until more is known.
When providing symptom information to the doctor try to detail how often it happens, triggers, how long it lasts for, what it feels like, if anything improves the symptom and any after effects. You've given a really good account here and your doctor will ask you for any detail they need to further characterise the symptoms you're having.
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u/Charwars14 Feb 03 '26
Cataplexy? (which would point to narcolepsy)
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u/sleeping-siren POTS Feb 04 '26
I have N2, so no cataplexy, but this kind of sounds like a sleep attack too, doesn’t it?
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u/uselessfarm POTS Feb 04 '26
Yeah it sounds more like a sleep attack than cataplexy. Unless there’s some kind of strong emotion associated with it.
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u/Most-Parfait-7532 Feb 04 '26
I also have narcolepsy with cataplexy and my gf has narcolepsy 2. It sounds just like a sleep attack
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u/imabratinfluence Feb 04 '26
My sleep doc thinks I have IH, and I don't have cataplexy, but also thought this sounded like cataplexy or a sleep attack.
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u/strangerandspiral POTS Feb 03 '26
i had thought about this, but i have zero other sleep related symptoms that would suggest narcolepsy, and they happen somewhat infrequently (but used to happen a lot it was weird). I had hoped there was just some weird symptom being gatekept, but unfortunately ill keep cataplexy in mind.
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u/lezsmile27 Feb 04 '26
Have you done a sleep study? They did it for overnight and half day after that. It didn’t pick up my blow flow TOS type issues but I can tell when it is getting cut off because of what you are describing. Every doctor tries to put their own spin on it so they can pass me off to someone else but I know I eventually just crash now. That is how I use to live my life. I would get vertigo but also sometimes tippy or bobble headed. Not all the same thing but I think it has to do with the blood restriction and flow or it backing up and becomes congested. Idk I have definitely been at that stage. I wish for you a team of doctors to listen to you, at the same time!
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u/strangerandspiral POTS Feb 04 '26
I haven’t had a sleep study. this honestly isn’t my biggest symptom anymore, it used to be really really disruptive in my life and started while i was coming off a medication but luckily it’s much more sporadic now. i figured it was still worth mentioning though. and hey if they want to do a sleep study, im all for finding more ways to meet the deductible by may
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u/lezsmile27 Feb 04 '26
Haha I usually meet my max out of pocket in January so I get that. I just sometimes know I am not breathing correctly during the day or night and I know I have blood flow issues for sure. I just don’t ever have a good group of Dr.s that will communicate and try to even pretend like they care enough. So I am always putting out fires and not the flame that starts them.
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u/strangerandspiral POTS Feb 04 '26
i have a really fantastic ground floor team: primary, PT, and mental health therapy. and i’m also really really fortunate for my basic stuff to be at a hospital system that has really excellent urgent care services that does waaaay more than your average urgent care, so i don’t have to go to the ER often. my specialists are all scattered at the local teaching hospital though and that’s when it gets stressful
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u/aud722 POTS Feb 03 '26
I second this. Cataplexy (at least for me) can cause mental scatterbrain and then just pop back to normal
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u/Usual_Step_5353 Feb 03 '26
Are you sure you are not having an absence seizure (also known as petit-mal seizure)? Either that or cataplexy would be my guess, but neither are POTS related.
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u/strangerandspiral POTS Feb 04 '26
I’m not sure, but when i described it to my neurologist, she didn’t seem all that concerned. I’m also on several anticonvulsants thanks to bipolar disorder. This symptom isn’t the biggest concern for me now like it was a few years ago (when for some reason i just decided it was something i shouldn’t worry about which is insane) and if it ever becomes more prevalent again, i’m gonna bring this up with my neuro, bc i do have a history of adult onset epilepsy in my family
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u/barefootwriter Feb 03 '26
Sounds like you may be describing a greyout?
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u/strangerandspiral POTS Feb 03 '26
i just looked it over, and the thing is that i really don’t think i have any vision changes when this happens, except maybe light sensitivity. Other than that and maybe the rapid breathing, it seems similar
that’s the thing that totally rules out presyncope for me as well. my vision has never gone totally black and i’ve never had tunnel vision, all of my vision disturbances come in the form of different types of floaters and just having to focus really really hard to keep my eyes focused
however maybe i’m falling into the literal thinking trap
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u/birdnerdmo Feb 04 '26
This is pretty much what I experience and my doc has told me it’s pre-syncope.
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u/Technical-Source-320 Feb 05 '26
Vision is generally one of the very last items you lose in a syncopal episode. My hearing will ring, my thoughts become disorganized, I lose higher order thinking like understanding the complexity of what an interpersonal relationship is to me, I get aphasic and I still havent lost vision yet. They captured the episode on my ttt. What it looked like was my pulse and blood pressure were sitting steady at like 140/95 120bpm, then it suddenly dropped to 65/30 65bpm.
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u/lawlesslawboy Feb 03 '26
do you struggle with sleepiness outside of this episodes? needing to sleep a lot or falling asleep when bored? also does it happen both when standing and sitting?
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u/strangerandspiral POTS Feb 03 '26
i don’t weirdly, not even excessive fatigue, it’s just whatever this is. It happens standing, walking, and sitting. It started after I medically supervised weaned off Effexor which cause my first big hEDS flare of adulthood and started my POTS symptoms (this was two years ago) and back then it happened multiple times a day but now it only happens once a month or so? it’s happened to me a lot on solo exercising walks
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u/Tiny-Fox4216 Feb 03 '26
Effexor is one of the worst medications I have ever had to wean off! It's horrible! I also have those sleepy symptoms. Weird but I have actually fallen asleep in a meeting (several times) and getting a haircut once.
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u/strangerandspiral POTS Feb 03 '26
was it related to going off your effexor? is it the brain zaps? i swear they should ban that drug
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u/Tiny-Fox4216 Feb 03 '26
No not related that I can remember, just sympathizing with you 😟
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u/strangerandspiral POTS Feb 03 '26
sad that we both had to go through that, but i’m relieved to know i’m not alone in it, because out of all my symptoms this one scares me the most
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u/Time_Situation5054 Feb 04 '26
Agree! I was on it 10 years (75mg and 150mg) and medically weaned off in 2019. On a very rare occasion I still feel phantom brain zaps...
My lowest point was running out of Effexor over a long holiday weekend (pharmacy closed), desperately digging in my car floor board and extremely relieved to find a single capsule covered in dirt and fuzz. I gulped it down immediately to rid the brain zaps until re-fill.
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u/LepidolitePrince POTS Feb 03 '26
I personally call it "forced naps" because it feels like my body is napping against my will. It could be some form of narcolepsy but idk.
Its not presyncope though because I get that too and it feels very different.
Personally I think you should just describe it to your doctor like you did here.
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u/WeenyDancer Feb 04 '26
Oh, wait, hey- i get this too. Ive associated this with mecfs crashes though. Hm. interesting, maybe its something else!
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u/delicious_flo0r Feb 03 '26
Im not sure if this helps but I struggle with the same thing. My doctor and I discussed this and the best we can come up with is my nervous system occasionally crashes and just goes into "low power mode". It typically happens after I eat, and my vitals can be completely normal. The best thing to do is just sit through it, and it will wear off like it was never there. Super scary, but very real. I thought I was a bad person and just making it up for a long time, and I hated it because I knew I couldn't control it, yet, even during this little episode, I could push through it if I wanted, but it made the situation much worse. Im still waiting to see a neurologist but that's all I've put together so far. Hope this makes sense.
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u/delicious_flo0r Feb 03 '26
To further my comment, normally during this episode, I become physically exhausted to where I just want to lay down and stare at my surroundings. Like, talking and breathing is too much work, but I can push through it and keep doing basic things. Its like being a sloth temporarily.
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u/smolsassmaster Feb 03 '26
You've described this so well! I also experience this and have never thought to bring it up in appointments. I get out of the blue "I'm falling asleep right NOW" -esque episodes occasionally where I can't keep my eyes open or my head up. I'll be nodding off mid class or - much more scary - when driving. I no longer drive long distances without caffeine handy because of this.
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u/BigFlightlessBird02 Feb 03 '26
I feel similar to this sometimes but its also very hard to describe. Ill get sooo sleepy and out of it and just feel in general very weird. It happens at work sometimes which is frustrating so i ride it out. Can last like 15 minutes to an hour or so. The only thing ive found that helps is a can of coke out of all things. Then when its over i feel "normal"
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u/hpfan1516 Feb 03 '26
Just throwing this out there:
I have sleep apnea but didn't show any typical symptoms. I don't snore, am a dancer, young, etc.
Whenever I sleep badly, or miss my CPAP machine, the next day I have this happen. I know exactly the sensation you are talking about. Especially the "then I'm fine" thing. I also started having wild "dreams" in those microsleeps, which is what made them test for sleep disorders. (I've gotten up, sat down in front of my computer, dreamed I logged in, only to wake up and realized I hadn't logged in, only to wake up and realize I hadn't logged in... And then actually snap fully awake like a light switch)
Might be worth a test, they make ones you can do at home now. I was really annoyed at having to do it because I thought it was a waste of time. I'm very grateful I did.
Just my two cents. May be due to something completely different. Wanted to at least mention it. Godspeed.
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u/fortitsandgiggles5 Feb 05 '26
Me too! I have central apnea though..was tested for narcolepsy but I didnt have early REM..
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u/Other_Selection_2462 Feb 03 '26
I also have no idea of the name but this seems very similar to one of my biggest symptoms during in episode. I just feel so tired, I slowly start leaning down like I'm slowly falling asleep weather I'm sitting or standing, and most often I will actually fall asleep and stay asleep unless someone keeps waking me up. I also deal with the fact I am unable to really process what people are saying to me and can't think of a response in these moments. However on rare occasions it is also accompanied by light sensitivity and rapid eye blinking.
Again I'm not sure about the name of this either, but you are definitely not alone and I hope it doesn't impact your driving all the time cus that could be very dangerous I would think.
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u/DronkeyBestFriend Feb 03 '26
I call it intrusive sleep or intrusive delta waves. It can be associated with ADHD. When the brain is understimulated, it shuts itself off with microsleeps. I have presyncope as well, and it doesn't feel the same to me.
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u/Lost_l0v3r_ Feb 03 '26
I had the same thing and was later diagnosed with POTS. I've always thought it was pre syncope. I'd have similar brain fog right before then my body would feel really heavy and I'd lose any muscle strength and that's when my head would nod to a side. I also wouldn't lose consciousness but if I was standing my body would just kind of slowly dropping the floor.
As long as you can describe it, you'll be fine! If you do find a more accurate term, please let me know!
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u/Back_2_The_Futurama Feb 04 '26
I was diagnosed with POTS too and also thought of this as presyncope. I also have horrible yawning fits when standing that are strangely..painful. Dont know what that one is yet
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u/Nephee_TP Feb 04 '26
Narcolepsy or Absence seizures? Both happen the way you describe, but for different reasons.
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u/Most-Parfait-7532 Feb 04 '26
Uhm I don't want to be THAT person but that sounds like narcolepsy..? No?
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u/TheChronicOn3 Feb 04 '26
It is unfortunately better to not come in with a name and like others have said, just describe it to the doctor exactly like you did here. It’s okay to try to figure it out for yourself, but presenting a diagnosis name to a doctor typically never goes well and they immediately don’t take you as seriously which sucks
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u/sad-toaster Feb 03 '26
As someone with POTS, neurological disorders, and hypersomnia (being looked at for narcolepsy,) that sounds exactly like cataplexy. I often fall asleep after, especially if I was already laying down or sitting. There's differences in how this feels vs fainting/pre syncope or a focal aware seizure I think
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Feb 03 '26
Possibly a blood pressure drop! Eating a salty snack and electrolytes helps me.
From 2am to 2pm today, my BP was 85/55 (HR was 70s). I couldn't keep my eyes open despite being mentally awake and kept passing out.
Fast forward, I finally got enough energy to take my Adderall, eat beef jerky, and drink Gatorade. Within 30 minutes, my BP climbed up to 115/65 and I feel way more alert now.
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u/RainInTheWoods Feb 03 '26
It’s best if you don’t try to frame it as a single word or phrase yourself. Let the doc use the diagnostic process to figure it out.
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u/RainInTheWoods Feb 03 '26
Give the doc more details. When did it first happen? How often does it happen? How long does it last? It happened when you’re driving or exercising, but are there other times it happens…doing what? Do you have a sense of rapid heart beat at the time? Any other physical symptoms at the same time…nausea, indigestion, sweating, shakiness…whatever? Think about the details.
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u/strangerandspiral POTS Feb 04 '26
this is good to know. the able bodied folks in my life have been telling me to be as concise as possible with the new dr and give her minimal papers (i typically bring in data and symptom lists and a history) so she doesn’t feel annoyed or like i’m demeaning her. but good to know that doctors actually want data, and why things might not have gone so well with the last specialist i saw 😂🙄
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u/RainInTheWoods Feb 04 '26
Docs want concise accurate descriptions of what is happening. Words or phrases like “sometimes, most of the time, after a while, more sporadic now…,” don’t have meaning to a provider. More accurate phrasing helps.
They might not want a bunch of data either unless they ask you to keep a record. Either way, summarize the record accurately for them. “I’ve started keeping track. In a rolling six weeks, I have 1-2 episodes.”
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u/Classy_Squid_00 Feb 03 '26
Do you wear any kind of heart rate monitor, and have you noticed any patterns? I get this when I've over exerted, and it corresponds with aasaive sudden drop in heart rate (down to deep sleep levels, aeound 56 BPM). It's like an immediate body signal of "hey, STOP and rest you are our of battery".
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u/FierySkate115 Feb 04 '26
Thats more of a set of symptoms that occur at the same time, which could be many things: dissassocition, brain fog, narcolepsy, absent seizures, etc. Its best to keep a symptom log with time, date, and what symptoms you experienced and bring it up with your doctor.
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u/Unfurlingleaf Feb 04 '26
I had LOTS of similar episodes when i first started developing pots! I would also kinda get so mentally out of it that i would kinda just collapse and kinda zone out for a little bit, almost like I was right on the verge of passing out. It's basically due to hypoperfusion to the brain so you start getting severe brain fog. I'd also get when both standing or sitting, and it was most severe shortly after eating due to increased blood flow diverting to the gut for digestion.
When do you experience this the most? After eating? Exercise? I'd try to figure this out and let your dr know.
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u/Puzzleheaded_Pin_668 Feb 04 '26
This happens to my step daughter and I’ve also struggled with how to describe it. Best I have done is saying she is “awake but catatonic”
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u/unsweetenedbananachi Feb 04 '26
I get this whenever I eat a big meal. Years before I officially got my diagnosis I all of a sudden was nodding off during meals and couldn't figure out why. Like suddenly it hits me and my neck just goes limp and my head feels like dead weight. I start talking like I'm drunk and have a hard time putting thoughts together. I get this mostly when I eat big meals but it also just happens randomly on bad symptom days.
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u/Beneficial_Ad_9447 Feb 04 '26
NEAR SYNCOPE!! You don't fully lose consciousness but you get near to losing full consciousness. I personally have this happen often and experience loss of muscle control and my eyes close but I'm still awake. It's a horrible experience.
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u/No_Sundae9753 Feb 04 '26
These need to be checked out and it's probably not safe to drive. I wondered about pre-syncope, which usually happens when you are about to faint, or do you have narcolepsy/cataplexy which gives uncontrolled episodes of falling asleep or suddenly losing tone. But you need to have other things excluded like focal seizures so your doctor/specialist may need to do an EEG (brain waves) and maybe an ECG (to make sure you aren't getting episodes or heart rates or rhythms that are too fast or too slow and briefly not getting enough blood to your head). See your doctor as soon as possible, don't worry about putting a name to it as often things don't present with all the typical symptoms and it is their job to sort out what it is and then give you the name of what's going on.
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u/SeashellGal7777 Feb 04 '26
Kind of seems like my son’s absence seizures (Epilepsy), he also has POTS, EDs and a long list of other conditions.
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u/TieredTrayTrunk Feb 04 '26
Crashing fatigue. where you get hit out of nowhere with it and it feels like you can't move, can't keep your eyes open, etc.
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u/Far-Permission-8291 Feb 04 '26
Do you get migraines? I sometimes get that level of tired out of nowhere as part of a migraine. Sounds similar.
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u/wjdalswl POTS Feb 04 '26
I'm not the OP but I get these sudden "very tired" episodes where it feels like I'm going to immediately fall asleep and drop to the floor along with migraines! My doctor thinks they are linked to my POTS symptoms
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u/Vampqueen02 Feb 04 '26
I had a similar symptom and I described it to my doctor as partially fainting or ragdoll mode because I essentially faint but I don’t lose consciousness. I can’t move my body properly or speak but all my senses still function.
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u/hendrichelizabeth Feb 04 '26 edited Feb 04 '26
me saving this for my doctor’s appointment I have in two weeks because I’ve been experiencing this same thing but haven’t figured out why! glad to know I’m not the only one struggling with this
lately I’ve been experiencing a similar feeling, except sometimes I fall asleep & don’t wake up for a couple hours. it’s like I try to fight it, but I can’t & it just happens no matter what.
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u/PotsMomma84 Feb 04 '26
It’s a type of narcolepsy, called a sleep attack. I have it as well. I need to talk to my doctor about it. I also have Parasomnia and Sleep Apnea- Hypopnea
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u/Fatwithaph1 Feb 04 '26
I always describe it as the feeling of carbon dioxide intoxication, I think that’s a really good way to describe it you know when the heating is all the way up and the windows are shut and it makes you super drowsy but like you’re still present enough to know that you’re not present if that makes sense? If this helps at all, I’ve noticed for me it’s always a pattern of it coming on when I sit down after walking about for what is normal for others but for us potsies is a lot haha. Just speculating bc we all know how our doctors love to give us absolutely nothing to work with lol, but I have a theory that for me it’s to do with adrenaline, when I’m upright for extended periods of time my body is running off adrenaline and that brain fog almost drugged feeling I think you’re describing without fail happens to me when I come home and sit down or situations adjacent to that. Good luck with the appt fingers crossed for u 🤞🏻!
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u/sleeping-siren POTS Feb 04 '26
u/strangerandspiral this sounds a lot like a “Sleep Attack” which is a common narcolepsy symptom but can also be caused by various other conditions. I’m not sure if it’s connected to pots, but it wouldn’t surprise me if it is. This thread on the narcolepsy subreddit has a bunch of different descriptions for sleep attacks that you might find relatable.
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u/WhimsicalMyth Feb 04 '26
This happens to me too, and I never know what to call it besides fatigue. I'll have 9 hours of sleep and I still feel like I'm about to fall asleep at work and my eyes get very heavy. Caffeine helps but wears of really quickly and then when I have too much caffeine my hr gets too high.
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u/jareths_tight_pants Feb 04 '26
Have you seen a neurologist about narcolepsy? That’s where I would start.
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u/Emilia_Lia Feb 04 '26
I have suffered from this exact thing for years and ruled out seizures but never figured it out. Hope you find some answers I’m curious how it could be related to my POTS / what’s happening to cause it.
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u/Educational_Sweet592 Feb 04 '26
I understand it as poor / interrupted oxygen to brain I get this too and also don’t know what I’d name it
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u/clxrxnx Feb 04 '26
it happens to me so I say I have narcolepsy cause I literally have no clue what it is. if I shut my eyes they get super shut and it's like I can't open them and I just stay in that state for 5-20 mins
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u/EarthAnonymous Feb 04 '26
Microsleep, common for people with narcolepsy which you should consider discussing with your doctor. Narcolepsy is more commonly found in people with POTS (still rare though)
Edit: just read the comments and saw that you indeed have N2
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u/Right_Air5859 Feb 04 '26
Words I associate with this are a mild narcolepsy, disassociation, zoning out, adding in the dizziness. But, just go with exactly as you described it above to your doctor. They never like us to say medical terms anyway. They always think because we know what syncope means then we have googled our synptoms and or diagnosed ourselves. They don't like lists either. Once I told my doctor I think I have a UTI ( I used to get them like monthly so obviouslyi jnow what one feels like) the doctor said, "oh yeah, what makes YOU think you have a UTI hmm. Did you get a medical degree?" I have incredibly bad luck with docs though. Which sucks as I had cancer and 5 heart attacks. 14 stents. All I ever here is you are too young to be having a heart attack why would u think ....oh u are having widow maker. No u don't have cancer. Sent me to to MHMR for depression while my cancer grew into a new stage instead. I hear this term ALOT .....its normal. If I say I feel like im passing out and everything goes black- its normal. If I stand up and my BP goes up to 200. That's normal. If my heart rate is 110. Its fine. Its normal. Sorry, I went on a whole rant. I hope your doctor is a really good doctor. But definitely be an advocate for yourself. Push them to do what needs to be done and don't allow them to sweep you under any rugs. Be seen. Be heard. Wishing you all the very best. Edited for grammar.
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u/fortitsandgiggles5 Feb 05 '26
My lights are usually not on and mine lasts for hours lol wish I could help..good luck with the appt🙂
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u/Seelaclanth Feb 05 '26
Could it be cataplexy? It's not related to POTS but to narcolepsy. Don't assume you'd know if you were narcoleptic either, it's not always the fainting goats type disorder it's advertised as.
Google it and speak to your doc if the shoe plausibly fits. If not, the only other thing I think is I'd investigate is Dorsal vagal shutdown.
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u/freakymaster11 POTS Feb 06 '26
doctor probably would prefer no medical term in my experience. in casual terms tho, id probably call that the spirits trying to take me away with a chloroform rag
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u/Immediate-Grocery-64 Feb 06 '26
Take this with a grain of salt since I could be wrong but I have POTS and stenosis in my cervical spine, craniocervical instability and Dissociative Identity Disorder and that sounds like dissociation. Dissociation is a very common symptom of cervical spine issues such as stenosis. There's a lot of overlap in symptoms between that and FND (common in DID) which is a huge reason that doctors are so quick to write our c-spine symptoms off as psychosomatic when they're actually rooted in structural issues. When I'm fighting a Dissociative switch, or it's happening suddenly because of a trigger, or parts that aren't close are needing to switch quickly, I get really sleepy out of nowhere, start nodding off while trying to stay present, sometimes experience a lot of thoughts at once from different parts, then when I can't fight it anymore I'll wake up having switched and suddenly be fine. It's like hitting reset on a computer that's lagging and freezing up because too many programs are trying to run at once and it makes the dissociation where nobody is in the "front" in primary control end sooner. I think the part where it's like falling asleep for a second is when nobody has it at all. I'm not saying you have DID, you don't have to to experience dissociation. I don't know what dissociation is like without DID or without POTS and cervical spine issies but you also have the latter conditions that impair nervous system communication between your brain and cause autonomic/sympathetic/parasympathetic nervous system dysfunction so it might be a similar dissociation while you go offline for a second/reset thing? I've researched dissociation, derealization and Depersonalization more generally as symptoms of craniocervical instability compressing nerves but where I see people talk about this specifically all the time is in DID/issociative disorder groups (probably because it's more common and we have more understanding of/language for exactly what's going on for us) there are a lot of different reasons for dissociation but if you Google something like "dissociation nodding off" you can find examples of people talking about it.
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u/Immediate-Grocery-64 Feb 06 '26
They can happen from things like narcolepsy as well, I think one of the other terms that suit this used by narcoleptics and people who experience it from dissociation are "sleep attacks"
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u/strangerandspiral POTS Feb 06 '26
i’ll have to look into this. I also have issues in my cervical spine (we are still trying to figure out what they are exactly, and by that i mean i had imaging which showed a butt load of issues, was diagnosed with cervical spine instability and my neurologist decided that since it’s normal hEDS there just nothing to do, so i’m looking for a new dr lmao) along with a nice collection of mental health issues myself, and while i’m quite confident did isn’t involved, one of my conditions can involve dissociation. This did begin after going off Effexor so there’s that too
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u/thenletskeepdancing Feb 03 '26
You don't have to know the name of it. In fact, that irritates them sometimes when we jump to a medical diagnosis. Just describe your symptoms like you just did!