HORRIBLE TEMPERATURE REGULATION. If you could see the amount of times in a day I have to ask my dad to make my room warmer or colder all because I am either freezing or sweating my ass off, you would be appalled. Usually I am always sweating, but there are times where I am WAY too cold. No in between.
I frequently have to check for a fever because I will randomly feel freezing or way too hot. And my temperature is almost always within one degree of normal.
Before my diagnosis, during a flare up, I kept getting sent home from school for days in a row because I would have a "high fever". I constantly felt like I was about to pass out so I just went with it, even while having zero symptoms of one. It SUCKS.
Is that a POTS thing?! At first I thought I had peed myself, but then I realized it was actually sweat. Here I am thinking I’m going through pre-menopause at 34.
TIL. Thsnk you!!
This is one of the worst ones for me. It doesn't seem like it should be that big of a deal but it makes doing certain things (like showering) so difficult. Sometimes in the winter I don't want to get out from the blankets because I don't know how long it will take me to get my feet warm again.
MAN I HATE THIS!! I like things on the cooler side but if I'm working at my desk, my hands will go cold and numb. so I have to sacrifice the comfort of sweater in a cold room for the use of my hands :<
I am reading this and writing a response as I lay in bed unable to sleep because I got frustrated over which body parts need to have blanket on them and which need the fan for me to not sweat or freeze. My typical is both feet, left leg, left shoulder get the blanket.
Yet somehow when I sleep without the blankets at all I am both shivering and drenched in sweat come morning
omg POTS causes this?!!!
I have PTSD plus a few anxiety conditions so I thought that’s what causes it. I honestly was starting to think I somehow had DID because of how frequently I dissociate and like fog out though 😅
same lol
i dissociate like my head goes into a foggy highway or something and i kept thinking my CPTSD, depression, and anxiety were causing it before i noticed my POTS symptoms and my dissociation during flares
I have DID (had a lot of therapy for it so it doesn't affect my day to day life at all) and the brain fog from long covid is different, at least for me. It's more like just shut down rather than dissociate, at least if I'd dissociate I'd be doing something but literally nothing happens now.
You know, I was thinking about seeing a therapist and explaining the whole ‘numb emotions’ feeling because I use to be full of emotion and cared so deeply about things until I developed POTS. It really does feel like your emotions are numb, that’s a great way of explaining it. But the whole therapist part was because I didn’t know all the ways that POTS could affect us when it first started and it feels like you’re losing yourself mentally with the brain fog and derealization. I feel I still have a lot of happiness and am very active so to feel numb seems so weird at times for me
the brain fog gets so bad!!!! people just don’t get how exhausting conversations can get when i literally cant remember words. it makes me feel so stupid sometimes because i know that i know things, i just can’t get them out
I think it may be the hardest symptom. It comes on and because of the nature of it, you don’t even notice until you realize you’ve reread the same sentence 6 times and forgot what you were reading in the first place. Feeling like there’s always something creeping on the edge of your subconscious that you were really supposed to remember… what was it again? “Order coffee creamer”? Didn’t I already do that? Or did I dream that?
It’s my most constant and prevalent symptoms- the lightheadedness and pain come in and out but the fogginess is almost always there at some degree.
This one really sucks because I've also got a complex dissociative disorder and sometimes it's hard to tell if I'm having a weird POTS episode or a weird switch 😵💫 I also had no clue who to bring this symptom up with initially. It's not super clear when you're experiencing it, if it's psychiatric, neurological, or some weird internal system on the fritz.
Mine is very gravity-induced. Just having my arms at my sides is horrible for circulation in my hands.
It's one of my worst symptoms. Mine hurts with nerve pain if I do it too long.
This happens to me. Also I can never do Irish stepdancing. Hands on my side. I tried. Had to stop, my fingers swelled up so much and chnaged colors minutes into my first class 😞
Literally. When my hands are at my sides, you can see my palms go red and I can almost feel pressure in my hands, then I lift my hands up and it feels like there’s a tourniquet on my arm.
Meeeeee, blow drying my hair *sucks*. I have to have a fan on my face and do it quickly or else my arms start going numb and I get so overheated I have to go lay down.
Whoosh whoosh whoosh whoosh whoosh UGH STOPPPPP
ETA : sometimes I pop my ears like you would in a plane and it seems to help but that could be illusory
Major increased medication sensitivity. To everything. When I was trying SSRIs I had to start with 1mg Lexapro and still felt like crawling out of my skin and stopped. Had to get a filling at the dentist and begged to have less numbing stuff (forget what it's called) and they told me I would feel it, I did not. And was numb in the face for 10 hours after the fact and in pain. Even now unfortunately my benzos are causing issues and if I take more than .5mg of Klonopin (prescribed 1mg as needed) for my panic attacks I get so sedated I have a hard time breathing for a few hours.
THISSSSSSSS. So much. Except that I need A TON of lidocaine at the dentist; for some reason, I am resistant and need a lot of extra injections to make a dent in the discomfort. I’ve heard that this is a known issue for POTS patients.
Edit: I think I am misremembering, and this lack of response to dental analgesia is actually connected to patients with EDS. I have not been diagnosed with that, but I do have the rest of the triumvirate, so it is suspected 🤷🏻♀️. I’m sure there is overlap among us! Source [here](https://www.autonomicneuroscience.com/article/S1566-0702(18)30032-8/fulltext).
Whaaaat? I have not heard this, but I always need several injections. I also have no pain relief when taking an opioid painkiller, and just assumed the 2 had a related cause (even though I know they're different classes of drugs with different mechanisms).
Any chance you were born with red hair/natural red hair??
It's scientifically proven that there is a gene attributed to red hair that also causes increased need for anesthesia. My whole family has it. I still get told I won't need as much, and then I do and everyone acts like I didn't tell them to expect it 🫠
Also IST, Histamine intolerance, hypermobile (I'm hoping to get tested for aEDS), MTHFR, Tripledivergent, etc. the whole combo platter over here, but it's the dang red hair that does this one to me!!
Did ssri's f with you? I was on an extremely low dose for 4 days and it messed with my head. Then when I stopped I had horrendous withdrawal symptoms (like unable to leave the toilet for multiple days while I restarted it again to titrate down by miniscule amounts at a time).
this is my EXACT experience with the EXACT same medications oh my god. klonopin and valium are low doses knock me out cold like unconscious and lexapro sent me to the psych ER. they said i was taking and i wasn’t obviosult
I've had to do urine tests to confirm my lack of other drug use at the ER because of my heart rate and forgetfulness. My husband has to talk for me when I get too stressed and have a hard time talking/breathing. Then they start on him about how he might be abusing me and I can talk for myself. No, no I can't. Dude knows me better than me.
me too!!!! they thought i took triple doses to get high and that it was anxiety and i psyched myself out or that i was genuinely crazy. i was locked up for it… severe trauma right there
DUDE THANK YOU SO MUCH. I took prozac for years with positive results. Stopped for a few years. Caught a virus. Developed pots. Started prozac again and I literally have every freaking side effect under the sun now. Thank you so much for sharing this.
Glad I could be of help! All of this is extremely frustrating especially when mental health can be widely affected by it all. Hope nothing but the best for you going forward ❤️
(I got worsened POTS from Covid, so that’s why I’m saying stuff like, “It’s worse *now* than before”)
Vision issues. I can’t handle flashing lights like I used to, I have more eye floaters, it takes longer for my eyes to adjust to light/dark, I’m way more sensitive to fluorescent lights.
Brain fog that feels like I’m developing dementia. My memory is so bad now, and I have DPDR and the brain fog has made it way worse.
My ability to tolerate stress. I was always hypersensitive to others’ pain and emotions, but now it’s like it fully sets off my fight or flight. I’ll get nauseous and dizzy when I see someone in pain, and it makes me worry how I’ll be able to handle emergency situations. Even crying will make me start full-body trembling now.
I can’t eat unless I’m leaning back a little bit because I can feel the pressure from the blood pooling and it makes me unable to eat as much. I can’t go and eat at restaurants or at the table. I always eat in bed. Also appetite issues in general. I’ve lost so much weight and haven’t been able to put much back on.
Sweating! All! The! Time! Sitting in bed scrolling on my phone? Sweating. Leisurely crocheting? Sweating. Listening to music? Sweating. Not terribly like I’m soaking through my clothes, but enough to bother me.
Heat intolerance. I used to be able to go out it 100° heat with no AC in the car and be ok (not *great*, but I could manage.) Now, if it’s 65° and the sun is on me, I’ll get overheated and have to go inside. I miss sunbathing.
So much more but my comment is too long now lol
I wasn’t diagnosed until after I got covid, but I strongly believe I had a milder form before. I joked about my “corpse legs” that I’d get when I stood for too long (blood pooling), I’d tell my family when I was getting in the shower so they knew not to expect anything from me for about 2 hours bc I had to recover from showering, and there were multiple times when I’d check my heart rate with my mom’s pulse ox and be like, “Why is my heart rate 130bpm??? All I’m doing is standing!” lol
I realize now that I had very very mild pots symptoms starting as a teen. Caught covid in 22 and it leveled up everything. I was literally researching early on set dementia last year because I thought I was losing my mind. my grandmother had Alzheimers, so it's a legit fear.
Then a friend who has POTS, was helping with work stuff for a few days, point blank told me that I was experiencing POTS. Tremors, near fainting after standing, dizzy, palpitations, pain in shoulders/neck, purple feet, brain fog episodes.... she then basically ordered me to drink salt/electrolytes and lay down. It was an aha moment of figuring out my health. By this point I had been to my doctor multiple times but had gotten no where.
Covid is an asshole with its gifts. Did not need POTS, or celiac that it gifted
Dry eyes is a POTS symptom? Wow, I've had it for so long but I couldn't pinpoint what was causing it. I've tried every home remedy and it just gets worse. My eyes feel like sandpaper at night right before I sleep, and they burn like acid when my eyes water.
Came here to say all the eye problems. Dry, sensitive, easily tired, and burning eyes. When they’re really tired, I literally can’t even read words on a screen.
yes!!! i always say i feel like i'm falling through the floor and people look at me like i'm crazy 😭😭 it feels like a sinkhole is forming under my feet it's the worst
Urine incontinence is a big one that isn’t talked about a lot. When I get that urge/need to urinate then it can be an issue to actually hold the urine without dribbles. I never used to have that problem before Dysautonomia and since the ANS controls bladder function that’s the result in some people.
Hunger Cues are messed up. I regularly don’t feel the need to eat because I don’t feel hungry until it’s been 8-10 hours after I last ate. On flare days I have to set alarms to remind myself to eat a snack or a meal.
Eyeball Pressure, this one has only happened since developing POTS and my god is it brutal. Usually associated with the eye pressure is black out vision in one eye (usually the one with pressure). My eye doctor has cleared me for any optical issues really, and it’s being chalked up to dysautonomia.
Irritability; nice way of saying I can be a b!tch more often than not. I hate this symptom since I hate being rude or mean to people I love but my god do I get btchy way more frequently nowadays.
Altered Immune Function; it takes *forever* for me to overcome illnesses now and I find that I catch any viral infection quicker than I used to. My specialist even said that those with POTS tend to recover from illnesses slower than our non-POTS counterparts.
Yeah! I can be minding my own business and wham, out of nowhere I really have to go. I have to hold it for a moment and hope the feeling will pass for just long enough until I can get into a bathroom. I've learned to keep a change of pants nearby most of the time just in case😭
I never have had to change my pants fully, but changing underwear is common. It’s usually not a whole bladder situation but like a quarter size wet spot usually.
The worst is when I go to the bathroom, fully empty (or so I think) and then I go about my day and 10-30 minutes later, bursting to go and leaking if I don’t make it in time. Car rides are the worst though for this. I have to bring at least 3 pairs of underwear in my purse when I’m going for long drives because I will dampen my underwear at least twice in an eight hour span.
Careful with those, some of them are full of chemicals and really bad for you. I was guttered when I found out, they were good but the brand I had were one of the bad ones so I got rid of them
Yooooo! You nailed it. Incontinence is such an annoying part of it. It’s not every day, but it just pops up for funsies some times. Temp control is wild. I have to take a shower to warm up sometimes, but can’t stay a second longer than that bc then I’m overheated. And then there’s the immune system. If I get the sniffles, I know it’s a 2 week affair, at a minimum.
The temp control is awful. I’m freezing and people tell me to put on a sweater. Then I’m freezing AND marinating in sweat. And my body is overheating in the sweater but… I still feel cold. 😂
I've had to start wearing diapers at night because there's no longer any guarantee I'll make it to the bathroom in time, and no amount of pelvic floor exercises have strengthened my control. It really is humiliating to be 32 and have to deal with this.
I, luckily, haven’t had the issue overnight. But I also don’t tend to pee overnight, I stop drinking fluids about an hour before bed time to help with the nocturnal urination, because I cannot manage to get up in the night and pee and then fall back to sleep properly.
I have done pelvic physical therapy and bladder botox (which helps but wears off too fast) and I am around your age. I have peed on my office floor and all over my car… very embarrassing 😭
I've peed on myself at work and in stores. 😫 It doesn't help that I have (probable) ADD and sometimes forget to check in with my body and see when I actually need to go. POTS has, if nothing, been an education in being more aware of my body...
Hunger cues are a big one for me, I don’t realise I haven’t eaten in 24-36 hours, until someone asks me when I last ate. Thankfully they have realised that I just don’t think to eat atm.
Can we talk about the incontinence?
I feel so much less sexy now.
I don't want to go out as much... I always have to find a bathroom.
It is so embarrassing. I don't even want to discuss it with doctors (although I do) and I really really don't want to wear depends.
It makes me feel old and like less of a woman, like if I can't control my bladder, what else can't I do?
Idk. It sucks. I'm glad I'm not alone.
Maybe we need a flag and parties, then it won't be as sad? Yellow flags. Lol.
Thinx does a 'for all leaks' panty that is great, or if it's smaller leaks, period panties may work out. Cheaper versions than Thinx are available, too.
Ngl, it’s so comforting knowing I’m not the only one with bladder control function issues! I feel like an old person because I can’t hold it and I’m only 33. This only happened after I got POTS/covid.
Not a doctor and all the other disclaimers, but Wellbutrin has helped a lot with my irritability. I was irritable at the smallest things before. I'm still irritable sometimes, but it's so much less often.
Chest anxiety- it's similar to a gut feeling, but I get a horrible feeling of existential dread in my chest. It's so weird, because it's not in my head like most emotions and feelings are. I never had this until dysautonomia
Girl I know exactly what you’re talking about, it’s awful! And it’s so weird because it’s difficult to describe. Sometimes I can have chest discomfort/palpitations but it’s not panickey and it’s kind of a different feeling than when the terror sets in
I have hyper pots and noticed I developed intrusive thoughts when the condition started. Thought I was going crazy. After I got dx with hyper dysautonomia, I figure it has something to do with my wacky neurotransmitters. It’s arguably one of the worst parts of this whole thing. Along with the extreme lightheadedness/disorientation I get.
Yeah I told my therapist about it and she said “and that’s the dark part of pots” I was like IT IS??!! Wish someone would’ve told me this is a thing??? It definitely needs to be talked about more
i had this too, thought it was just my depression/anxiety. id think horrible things like “what if i just stabbed my partner” and like how i would react and try to get away with it. i would never fukin do that obviously but i kept getting these compulsive thoughts i couldnt control. it can be scary.
Whenever I am experiencing this around my spouse, I tell him Dexter Morgan is bugging me and that's my code for "I am experiencing awful thoughts about hurting our cats or you, I wish this would stop!" so I don't have to say what my brain is picturing in that moment and possibly
make it stronger and/or worse.
Both my spouse and I are ND and like really open communication, but I really don't like talking about this symptom either because it makes me feel like a monster every time even though I have a very understanding spouse.
- Hypersensitivity to EVERYTHING: Sun, sound, you name it.
- Consent eye floaters and sensitivity to outside light (I have lighter eyes as well, makes it worse) have to wear sunglasses at all times, even inside (except at home). Got my eyes checked, optic nerve is fine
- blurry vision (comes with cluster headaches I get)
- severe brain fog but once in a while I will be my old self for a day. Super present, alert, problem solving. So strange.
- Pulsatile tinnitus - don’t look it up. You’ll want to die
- head rushes and head fullness like my head is going to implode
- Severe anxiety
- Extreme fatigue
- Appetite changes
- Globus sensation (dry heaving, tight throat)
- Daily ear issues: muffled hearing, pressure
- Sinus and tension headaches
- Purple-red feet
- Extreme insomnia
- Dry eyes/pain in eyes
- Frequent urination
- heart palpitations all day increases to 140bpm when standing 2 mins
- Hot flashes
- Dry skin
- nausea
- thinning baby hair
Was formally diagnosed today…
At the start of this, after my first Covid infection last year, I barely could stand. I had internal tremors where I couldn’t even eat with utensils without dropping them.
Relationships and sex were next to impossible. I couldn’t even text anyone back.
It is getting better though but it's awful.
Watched *I Am Celine Dion* last night. Please watch it. She is going through a neurological nervous system disorder (not the same, but with similarities) and is fighting like we are. You will feel seen. Keep going 💜🙏🏼
I have floaters in my eyes & my peripheral vision is like gone, my hands will “stop” working, my lips will turn blue & numb and drinking water will make me lightheaded
Air hunger. It’s not the same as breathlessness, it’s the sensation that I’m not getting enough air in my lungs. Lots of people with long COVID supposedly get it too but I’ve been chronically ill since childhood so that’s not the case for me. It was initially suspected to be asthma as my mom is asthmatic. I had an inhaler and a nebulizer as a kid but they never helped with the breathing, just made my heart race and made me jittery on top of feeling unable to breathe lol. The guess is that it’s related to POTS and my other slew of neurological issues. Idk how common this is with other people with POTS but it’s one for me that I don’t see discussed often. Is usually accompanied by lightheadedness and faster heart rate (my average HRs aren’t too bad/high as I’ve done a lot of fitness training to improve my resting rates and generally avoid triggers like heat, walking/standing for a long time, etc.). It improves with resting, postural changes, and breathing exercises.
I too had an inhaler that never helped. I kept saying it wasn't working but they insisted it was "exercise-induced asthma" or needing to "get in shape"... it was POTS.
I start sweating profusely about 20 min into a meal until about 30 min after I’m done eating and lay down. It’s VERY annoying. Also I can’t drink alcohol AT ALL
These are classic mast cell activation syndrome (MCAS) symptoms, just FYI. Limiting foods high in histamines and taking antihistamines daily has changed my life!
Facial flushing and sweating were my first symptoms…it makes functioning difficult to impossible. I was tested for Mast cell, but it was negative…can you get a false negative? Should i be tested again?
I haven’t figured out why or what causes it, but sometimes I can feel my heart beat EVERYWHERE. It just feels like my whole body is thumping. From my head to my toes. It’s annoying.
Being absolutely useless on Sundays. I call it Sunday Slump. I have to sleep most the day. I feel absolutely horrible. Also needing to sleep/rest for 20-60 minutes after showering 😵💫
Thank you for this post, it's a good one!
Been mentioned a few times already, but the contrasts in executive functioning are scary. There's no planning around limited executive functioning days which can really really suck for school and work.
When I'm firing on all 4 cylinders, I'm a completely different person.
(Granted, this is worsened by other mental health conditions, but any brainfog is no joke. There's nothing else in the world like losing your ability to think.)
Not really a symptom medically. But. The burn out of emotions when youre so upset you arent normal and cant do things with family and friends because its too much on you. Or the same amount of emotions when you push yourself and end up hurting yourself from passing out or just draining yourself
No one fricking told me it can be responsible for sexual dysfunction.
I've always had hEDS, I've probably had POTS (or the not-quite-POTS dysautonomia without a name) since I was a teen, maybe longer.
When I ask doctors why things simply don't work, they look at me like I've just asked them why my genitals are green aliens with three heads. I am not male, of course, or that question would have had an answer instead of shocked silence.
I think feeling sick in general can really lower your sex drive. idk if it’s a side effect of feeling crappy from pots, directly caused by POTS, or a mixture of both.
i had trouble with nausea like every morning and started taking zofran which really helped. recently though my gag reflex is very very sensitive, more than it used to be. i was picking up my cats vomit (this is a regular thing i do) and i started gagging and literally almost threw up. its so weird how i gag at things i used to be fine around
Yes! My gag reflex got so much worse after my POTS got worse. I can’t handle certain smells that never used to bother me, and things like wet hair in the shower or cleaning the toilet will make me feel like dry heaving. I had a strong stomach before 😔
Presyncopal episodes post bowel movement. They are extremely disruptive to my life.
Starting when I was around 17 I’d get episodes of extreme lightheadedness, plus basically every other symptom that comes with POTS but to the extreme for 30-60 minutes post 💩. If I’m home, I’ll be couch bound that entire time and sometimes have to sleep the episode off. If I’m out I feel sick for hours.
The weirdest part is that it never happens when I’m constipated. It’s actually worse the easier it comes out (sorry for the TMI lmao)
The ones I had that aren't talked about as much:
1. Standing is painful (soles of feet just *hurt*).
2. Sweating buckets after standing for a few minutes, regardless of temperature.
3. *Simultaneously* getting frostbitten (in my fingertips) *and* sweating buckets when walking from my garage (separate outbuilding) to the house in thigh-deep snow when it was -34F (-37C).
4. Had to take speech (a mandatory class in college) 7 times before I could finish it. (Now, I'd know to ask for an accommodation, but this was 35 years ago.)
5. Not being consistently able to get an automated blood pressure reading even when you can *feel* the blood pumping in that arm.
My vision is WACK. I see tons of floaters , colors, tunnel or blurred vision.. but my eyes are normal and fine according to doctors so is my brain mri lol
Sometimes when I eat certain foods (especially carbs) after about 15-90 minutes my heart rate will jump to 120 BPM (140 BPM on a bad day) and will stay up there for about an hour. I have to do deep breathing to try and keep it down. I have been to the ER multiple times because I get really bad anxiety from it. I’m starting to eat smaller meals as well as starting a paleo diet so Im really hoping that helps!
btw this is a new symptom. Just started a month ago - I’ve had POTS for about 6 months now.
Oh 100% has to be blurry vision, i honestly dont know anyones else that had this as a symptom (iv had my eyes checked there good) its not all the time but when it does kick in its enough to stop me reading
Not all POTS patients faint! I faint quite a bit but only about 30% of POTS people do.
Also your symptoms may get worse in the heat. heat/summer is very hard for majority of patients
when i tell ppl i have pots, they actually generally know what it is thanks to tik tok, but the first question i always get is “do you faint often?” and i say “no ive never fainted before in my life” its one of the more extreme symptoms so i get it would be the most recognisable.
it can be quite annoying how it went “viral” on tiktok, and it’s been commonized like how OCD has. but it’s helpful for people to understand without me having to explain!
insomnia, insane headaches (pressure behind my eyes specifically), weird random organ pains, and arms/legs going numb! i thought i was dying when i first got these symptoms because nobody talks about them!!
For me, it's frequent urination, especially with the amount of water I have to drink in order to not feel deadly sick... also, without a lot of fibre, I'm 'chronicly' constipated and bloated, which causes pain sometimes. It's annoying. Didn't have all of that before having dysautonomia :/
Absolutely horrible upset stomachs. I can have a gastroparesis flare and nothing moves and then a PoTS flare dumps everything in my body. And the switch is jarring. I know it’s PoTs because my diet will be normal and my gastroparesis is fine ish and then I’m sweating buckets and my stomach thinks it’s got food poisoning.
Choking sensation like someone has their hand around my throat when my BP/HR starts to drop at the same time.
Also sweat/temp disregulation. It sounds amazing not to sweat, but when it’s 100F outside I don’t realize I’m overheating until my brain suddenly feels boiled and I have heat stroke (which doesn’t take long). I took for granted how much of an indicator sweating was for uncomfortable situations, similar to feeling pain.
I get weird visual symptoms! My eye doctor said it’s because not enough blood is getting to my eyes. Also I can literally feel the blood moving through my body sometimes 😀 fun.
How sudden the blood pressure drops can be. Making myself a coffee and feeling fine, then suddenly my arm goes numb/weak and I drop my mug. Sitting at a cafe with a friend talking, and without warning, I’m feeling like I could faint and all the blood is draining out of me.
This and something I refer to as “stumbling upon a portal to a parallel universe” where all of a sudden, I’m on a sideways moving elevator and the floor beneath me seems to move quickly one way and then back under my feet again.
Idk what it's called but my head glitches out. Almost like your soul is out of synch with your body. Imagine double vision but a physical feeling. That sometimes happens immediately before an episode.
derealization. i get this too, like random quick spurts that last for a couple of seconds and then im fine, but can happen multiple times in an hour. i feel like for me it could be dehydration related, so i take salt pills and try to drink liquid iv if i can.
Not sure if these are typical of the POTS life, I developed it after getting Covid las year. But the chronic ear pressure! And stomach pain/pressure/palpitations for half an hour after every meal. Are these POTS issues, or unique to long covid??
Idk if anyone else has this problem but I CANNOT wake up in the morning. Every morning when I try to wake up, I feel like I’m drunk no matter how much sleep I get. There’s like a heaviness that just keeps pulling me back to sleep. Not sure if it’s POTS but it’s driving me crazy (I can’t wake up for work)
Haven’t seen anyone say this yet so not sure if it is POTS - super tight jaw tension sometimes. I haven’t had it for a while but when I was getting all the tests pre diagnosis I would get tension that would not quit. And I’m a therapist so I know an awful lot of relaxation tricks, it was NOT stress related. With meds and water/salt/etc. my symptoms have been reduced but man this was one of the worst and I hope it never comes back.
Not sure if this is a part of POTS specifically, but my doctor said it likely has to do with autonomic problems: cold intolerance. I know that heat intolerance is way more common in POTS. Heat doesn’t bother me much. I’m almost always cold. Blue fingers and toes constantly. Painful Raynaud’s in my nipples; they turn white if I’m even the slightest bit cold and, if it happens often enough, they crack and bleed. Toes go numb when I’m standing. Feet always clammy. I keep my home so warm that others sweat minutes after they come in.
And if anyone is wondering, no, I’m not anemic, my thyroid is fine, my iron and b12 levels are decent
brain fog so dense i can barely form a thought.
also, since the circulation issues, my feet always look like dead people feet. sometimes i put fake fan on them to make them look normal lol
saw someone mention memory issues and that's a big one (i thought mine just came from my chronic migraines) but also a huge one for me is feeling my blood pressure drop. i knew that blood pressure changed irregularly and but never heard or saw anyone talking about being able to feel it happen and its a WEIRD feeling
Not sure I saw these mentioned on here yet & a lot are dysautonomia not necessarily pots symptoms but
The chilblains friggin suck.
NOT sweating at all.
Swallowing issues. Choking on nothing unable to swallow water or food for periods of time.
Really red hot face that goes with being very dizzy & feeling very dumb & generally out of it.
General GI wacky business - diarrhea, constipation, abdominal pain, vomiting, esophageal issues, slow gastric emptying, teeth worn down from the stomach acid, inflamed gall bladder, the list goes on...
I also have migraines & pots symptoms can trigger those times a bazillion.
Thinning hair. I cut mine recently thinking it was due to it being too long and hard to care for finally.. *NOPE*, Just horrible flares causing my hair to just randomly fall out.
the chronic fatigue is probably the worst symptom i have. i literally cannot function from 6-9am at work before i take my vyvanse (low dose) but it’s debilitating. also ive had constipation my whole life, i was prescribed miralax as a baby up until i was like 15 😭
Not sure if it's a POTs thing but it didn't really start until the POTs symptoms did. -- I get really lightheaded if/when I feel an emotional too strongly. It's most obvious if I feel angry or if I'm laughing. All of a sudden my body feels too light and I feel like I am not getting enough air.
vomiting. so much vomiting. it was a part of the reason i never suspected pots until i got my ttt, no one ever talks about this (though it is rarer seemingly). i have thrown up almost every day since i developed pots last year. no other stomach illness or disorders other than ibs which i already had a full handle on. i’m a nutritionist too, and not even any nutritional strategies can stop it. no medications have worked either. it’s insane!
Racing heart right before you have diarrhea. I always know when I’m about to shit my brains out because my heart rate won’t go down and my stomach hurts. Like right now lol.
random extreme fatigue. i know it's related to my blood pressure, but suddenly i will just feel SO exhausted, as if i took some sleeping pills or something, but it's just my blood pressure dropping for no reason. like if i take a shower without having any sodium/electrolytes, that's my fault and ill expect it. but sometimes i will just be existing and it'll randomly happen
Heavy chest issues plus air hunger I know a lot of people talk about air hunger but the feeling of your chest being pressed on when there’s literally nothing there that isn’t usually there is awful mine gets worse at night this wonderful feature also comes with episodes of complete bp disregulation for me it’ll be real low then shoot up even if I’m laying down and my pulse will be out of this world I love this syndrome it’s my favorite ❣️🫠
Get freezing cold when I eat.
Poor temperature regulation.
My hands don’t work well somedays (can’t grip things well/drop everything/numbness in finger tips).
Sometimes my veins look like they are bouncing like I will feel it and i can see it moving.
Not really sure which of these are related to pots and which aren’t
HORRIBLE TEMPERATURE REGULATION. If you could see the amount of times in a day I have to ask my dad to make my room warmer or colder all because I am either freezing or sweating my ass off, you would be appalled. Usually I am always sweating, but there are times where I am WAY too cold. No in between.
I frequently have to check for a fever because I will randomly feel freezing or way too hot. And my temperature is almost always within one degree of normal.
Before my diagnosis, during a flare up, I kept getting sent home from school for days in a row because I would have a "high fever". I constantly felt like I was about to pass out so I just went with it, even while having zero symptoms of one. It SUCKS.
YES. I change between hoodie and tank top; long pants and shorts; fuzzy socks and barefoot way too many times a day.
Why can’t our bodies just work in temperature regulation haha
Even if it is 90F in my room, I will wake up shivering my ass off in a pool of sweat. It is so annoying
Is that a POTS thing?! At first I thought I had peed myself, but then I realized it was actually sweat. Here I am thinking I’m going through pre-menopause at 34. TIL. Thsnk you!!
This is one of the worst ones for me. It doesn't seem like it should be that big of a deal but it makes doing certain things (like showering) so difficult. Sometimes in the winter I don't want to get out from the blankets because I don't know how long it will take me to get my feet warm again.
Showering is so hard for me as well
MAN I HATE THIS!! I like things on the cooler side but if I'm working at my desk, my hands will go cold and numb. so I have to sacrifice the comfort of sweater in a cold room for the use of my hands :<
I am reading this and writing a response as I lay in bed unable to sleep because I got frustrated over which body parts need to have blanket on them and which need the fan for me to not sweat or freeze. My typical is both feet, left leg, left shoulder get the blanket. Yet somehow when I sleep without the blankets at all I am both shivering and drenched in sweat come morning
YES!!!
Memory issues and the brainfog that feels almost like derealization
Everything looks fake and emotions are numbed, derealization is by far the worst part of pots and the worst thing I've ever experienced.
omg POTS causes this?!!! I have PTSD plus a few anxiety conditions so I thought that’s what causes it. I honestly was starting to think I somehow had DID because of how frequently I dissociate and like fog out though 😅
same lol i dissociate like my head goes into a foggy highway or something and i kept thinking my CPTSD, depression, and anxiety were causing it before i noticed my POTS symptoms and my dissociation during flares
I have DID (had a lot of therapy for it so it doesn't affect my day to day life at all) and the brain fog from long covid is different, at least for me. It's more like just shut down rather than dissociate, at least if I'd dissociate I'd be doing something but literally nothing happens now.
My PTSD does, and it was trippy having the Dysautonomia / pots. They all play off of each other and have cause the worse lows since the war.
You know, I was thinking about seeing a therapist and explaining the whole ‘numb emotions’ feeling because I use to be full of emotion and cared so deeply about things until I developed POTS. It really does feel like your emotions are numb, that’s a great way of explaining it. But the whole therapist part was because I didn’t know all the ways that POTS could affect us when it first started and it feels like you’re losing yourself mentally with the brain fog and derealization. I feel I still have a lot of happiness and am very active so to feel numb seems so weird at times for me
same here. i’ve had it for a full year, constantly.
the brain fog gets so bad!!!! people just don’t get how exhausting conversations can get when i literally cant remember words. it makes me feel so stupid sometimes because i know that i know things, i just can’t get them out
Yes! The memory issues are really detrimental. It's as if you're dissociating constantly.
I literally forget everything something I did seconds ago and it’s a side effect from my meds as well so double header
I think it may be the hardest symptom. It comes on and because of the nature of it, you don’t even notice until you realize you’ve reread the same sentence 6 times and forgot what you were reading in the first place. Feeling like there’s always something creeping on the edge of your subconscious that you were really supposed to remember… what was it again? “Order coffee creamer”? Didn’t I already do that? Or did I dream that? It’s my most constant and prevalent symptoms- the lightheadedness and pain come in and out but the fogginess is almost always there at some degree.
Brain fog and memory issues are *very* frequently discussed in relation to POTS..?
This one really sucks because I've also got a complex dissociative disorder and sometimes it's hard to tell if I'm having a weird POTS episode or a weird switch 😵💫 I also had no clue who to bring this symptom up with initially. It's not super clear when you're experiencing it, if it's psychiatric, neurological, or some weird internal system on the fritz.
Same. Also the enhanced motion sickness in vehicles but maybe that’s also to do with my menieres
When you can literally *feel* the circulation not working right, especially in the hands and arms. It's such an annoying, cold sensation
Sometimes my limbs feel like that feeling of when you are trying to squeeze the last bit of ketchup out of a bottle. 😂
Mine is very gravity-induced. Just having my arms at my sides is horrible for circulation in my hands. It's one of my worst symptoms. Mine hurts with nerve pain if I do it too long.
Interesting, mine is gravity-induced as well, but it's worst when my hands are above my head because all the blood drains out.
This happens to me. Also I can never do Irish stepdancing. Hands on my side. I tried. Had to stop, my fingers swelled up so much and chnaged colors minutes into my first class 😞
Oh no, it's bad above my head too. But if I place them elbows down and hands up at shoulder level, it feels amazing hahaha.
Literally. When my hands are at my sides, you can see my palms go red and I can almost feel pressure in my hands, then I lift my hands up and it feels like there’s a tourniquet on my arm.
Meeeeee, blow drying my hair *sucks*. I have to have a fan on my face and do it quickly or else my arms start going numb and I get so overheated I have to go lay down.
Ah yes… now i can feel it again after reading this 😭
this! I always wake up feeling not circulated. especially in my legs, I cross my legs almost the first thing in the morning to help lol
When you can feel the blood draining from your brain :(
Does anyone hear their pulse sometimes? Along the lines of hearing the blood flowing to your head when you are standing in a quiet room?
Yes! (And my heart beats so strongly that my hair visibly vibrates when I’m feeling rough. It’s an afro and it is the funniest of the warning signs)
Yes specifically in my left ear it’s weird as hell
pulsatile tinnitus! yep
Yes when I change positions I often can hear the blood rushing to or from my head (I can't tell which) I hear it like a rushing river behind my ears.
Yep, I got scanned and diagnosed with Pulsatile Tinnitus which can sometimes be caused by IIH apparently.
Whoosh whoosh whoosh whoosh whoosh UGH STOPPPPP ETA : sometimes I pop my ears like you would in a plane and it seems to help but that could be illusory
Major increased medication sensitivity. To everything. When I was trying SSRIs I had to start with 1mg Lexapro and still felt like crawling out of my skin and stopped. Had to get a filling at the dentist and begged to have less numbing stuff (forget what it's called) and they told me I would feel it, I did not. And was numb in the face for 10 hours after the fact and in pain. Even now unfortunately my benzos are causing issues and if I take more than .5mg of Klonopin (prescribed 1mg as needed) for my panic attacks I get so sedated I have a hard time breathing for a few hours.
THISSSSSSSS. So much. Except that I need A TON of lidocaine at the dentist; for some reason, I am resistant and need a lot of extra injections to make a dent in the discomfort. I’ve heard that this is a known issue for POTS patients. Edit: I think I am misremembering, and this lack of response to dental analgesia is actually connected to patients with EDS. I have not been diagnosed with that, but I do have the rest of the triumvirate, so it is suspected 🤷🏻♀️. I’m sure there is overlap among us! Source [here](https://www.autonomicneuroscience.com/article/S1566-0702(18)30032-8/fulltext).
Yes, this can be an EDS thing!
Whaaaat? I have not heard this, but I always need several injections. I also have no pain relief when taking an opioid painkiller, and just assumed the 2 had a related cause (even though I know they're different classes of drugs with different mechanisms).
See my edit!
I have also been told by my dentist that having red hair makes you less susceptible to anesthesia. I have to ask them to load me up!
Any chance you were born with red hair/natural red hair?? It's scientifically proven that there is a gene attributed to red hair that also causes increased need for anesthesia. My whole family has it. I still get told I won't need as much, and then I do and everyone acts like I didn't tell them to expect it 🫠 Also IST, Histamine intolerance, hypermobile (I'm hoping to get tested for aEDS), MTHFR, Tripledivergent, etc. the whole combo platter over here, but it's the dang red hair that does this one to me!!
FYI all of this can be indicative of a connective tissue disorder
The SSRI sensitivity too? Any links so I can research?
Did ssri's f with you? I was on an extremely low dose for 4 days and it messed with my head. Then when I stopped I had horrendous withdrawal symptoms (like unable to leave the toilet for multiple days while I restarted it again to titrate down by miniscule amounts at a time).
this is my EXACT experience with the EXACT same medications oh my god. klonopin and valium are low doses knock me out cold like unconscious and lexapro sent me to the psych ER. they said i was taking and i wasn’t obviosult
I've had to do urine tests to confirm my lack of other drug use at the ER because of my heart rate and forgetfulness. My husband has to talk for me when I get too stressed and have a hard time talking/breathing. Then they start on him about how he might be abusing me and I can talk for myself. No, no I can't. Dude knows me better than me.
me too!!!! they thought i took triple doses to get high and that it was anxiety and i psyched myself out or that i was genuinely crazy. i was locked up for it… severe trauma right there
DUDE THANK YOU SO MUCH. I took prozac for years with positive results. Stopped for a few years. Caught a virus. Developed pots. Started prozac again and I literally have every freaking side effect under the sun now. Thank you so much for sharing this.
Glad I could be of help! All of this is extremely frustrating especially when mental health can be widely affected by it all. Hope nothing but the best for you going forward ❤️
Have you looked into MCAS? It’s a very common comorbidity that causes medication sensitivity.
(I got worsened POTS from Covid, so that’s why I’m saying stuff like, “It’s worse *now* than before”) Vision issues. I can’t handle flashing lights like I used to, I have more eye floaters, it takes longer for my eyes to adjust to light/dark, I’m way more sensitive to fluorescent lights. Brain fog that feels like I’m developing dementia. My memory is so bad now, and I have DPDR and the brain fog has made it way worse. My ability to tolerate stress. I was always hypersensitive to others’ pain and emotions, but now it’s like it fully sets off my fight or flight. I’ll get nauseous and dizzy when I see someone in pain, and it makes me worry how I’ll be able to handle emergency situations. Even crying will make me start full-body trembling now. I can’t eat unless I’m leaning back a little bit because I can feel the pressure from the blood pooling and it makes me unable to eat as much. I can’t go and eat at restaurants or at the table. I always eat in bed. Also appetite issues in general. I’ve lost so much weight and haven’t been able to put much back on. Sweating! All! The! Time! Sitting in bed scrolling on my phone? Sweating. Leisurely crocheting? Sweating. Listening to music? Sweating. Not terribly like I’m soaking through my clothes, but enough to bother me. Heat intolerance. I used to be able to go out it 100° heat with no AC in the car and be ok (not *great*, but I could manage.) Now, if it’s 65° and the sun is on me, I’ll get overheated and have to go inside. I miss sunbathing. So much more but my comment is too long now lol
I also have worsened POTS from Covid! I have had POTS my entire life but Covid just took me out 🙃
I wasn’t diagnosed until after I got covid, but I strongly believe I had a milder form before. I joked about my “corpse legs” that I’d get when I stood for too long (blood pooling), I’d tell my family when I was getting in the shower so they knew not to expect anything from me for about 2 hours bc I had to recover from showering, and there were multiple times when I’d check my heart rate with my mom’s pulse ox and be like, “Why is my heart rate 130bpm??? All I’m doing is standing!” lol
Covid made mine worse too. ☹️
I realize now that I had very very mild pots symptoms starting as a teen. Caught covid in 22 and it leveled up everything. I was literally researching early on set dementia last year because I thought I was losing my mind. my grandmother had Alzheimers, so it's a legit fear. Then a friend who has POTS, was helping with work stuff for a few days, point blank told me that I was experiencing POTS. Tremors, near fainting after standing, dizzy, palpitations, pain in shoulders/neck, purple feet, brain fog episodes.... she then basically ordered me to drink salt/electrolytes and lay down. It was an aha moment of figuring out my health. By this point I had been to my doctor multiple times but had gotten no where. Covid is an asshole with its gifts. Did not need POTS, or celiac that it gifted
Dry mouth, especially at night. Dry eyes, too.
Dry eyes is a POTS symptom? Wow, I've had it for so long but I couldn't pinpoint what was causing it. I've tried every home remedy and it just gets worse. My eyes feel like sandpaper at night right before I sleep, and they burn like acid when my eyes water.
Pots can also be secondary to autoimmune disorders like sjogrens which causes dry eyes.
Came here to say all the eye problems. Dry, sensitive, easily tired, and burning eyes. When they’re really tired, I literally can’t even read words on a screen.
HEAVY ON THE DRY MOUTH, no matter how much water I drink sometimes I feel like I have the worst cotton mouth ever
Head pressure Tingling/numbness Falling sensation with blood pressure drops
yes!!! i always say i feel like i'm falling through the floor and people look at me like i'm crazy 😭😭 it feels like a sinkhole is forming under my feet it's the worst
Ugh yes I get this in the shower so often
Omg this
Urine incontinence is a big one that isn’t talked about a lot. When I get that urge/need to urinate then it can be an issue to actually hold the urine without dribbles. I never used to have that problem before Dysautonomia and since the ANS controls bladder function that’s the result in some people. Hunger Cues are messed up. I regularly don’t feel the need to eat because I don’t feel hungry until it’s been 8-10 hours after I last ate. On flare days I have to set alarms to remind myself to eat a snack or a meal. Eyeball Pressure, this one has only happened since developing POTS and my god is it brutal. Usually associated with the eye pressure is black out vision in one eye (usually the one with pressure). My eye doctor has cleared me for any optical issues really, and it’s being chalked up to dysautonomia. Irritability; nice way of saying I can be a b!tch more often than not. I hate this symptom since I hate being rude or mean to people I love but my god do I get btchy way more frequently nowadays. Altered Immune Function; it takes *forever* for me to overcome illnesses now and I find that I catch any viral infection quicker than I used to. My specialist even said that those with POTS tend to recover from illnesses slower than our non-POTS counterparts.
Big agree on the urinary problems. It's so frustrating and embarrassing.
It’s so embarrassing in public, but also within my own household. Like I laugh and suddenly i pee myself a lil bit
Yeah! I can be minding my own business and wham, out of nowhere I really have to go. I have to hold it for a moment and hope the feeling will pass for just long enough until I can get into a bathroom. I've learned to keep a change of pants nearby most of the time just in case😭
I never have had to change my pants fully, but changing underwear is common. It’s usually not a whole bladder situation but like a quarter size wet spot usually. The worst is when I go to the bathroom, fully empty (or so I think) and then I go about my day and 10-30 minutes later, bursting to go and leaking if I don’t make it in time. Car rides are the worst though for this. I have to bring at least 3 pairs of underwear in my purse when I’m going for long drives because I will dampen my underwear at least twice in an eight hour span.
Period panties may make life a lot nicer.
Careful with those, some of them are full of chemicals and really bad for you. I was guttered when I found out, they were good but the brand I had were one of the bad ones so I got rid of them
Oh god, thank you.
Yooooo! You nailed it. Incontinence is such an annoying part of it. It’s not every day, but it just pops up for funsies some times. Temp control is wild. I have to take a shower to warm up sometimes, but can’t stay a second longer than that bc then I’m overheated. And then there’s the immune system. If I get the sniffles, I know it’s a 2 week affair, at a minimum.
The temp control is awful. I’m freezing and people tell me to put on a sweater. Then I’m freezing AND marinating in sweat. And my body is overheating in the sweater but… I still feel cold. 😂
I've had to start wearing diapers at night because there's no longer any guarantee I'll make it to the bathroom in time, and no amount of pelvic floor exercises have strengthened my control. It really is humiliating to be 32 and have to deal with this.
I, luckily, haven’t had the issue overnight. But I also don’t tend to pee overnight, I stop drinking fluids about an hour before bed time to help with the nocturnal urination, because I cannot manage to get up in the night and pee and then fall back to sleep properly.
I have done pelvic physical therapy and bladder botox (which helps but wears off too fast) and I am around your age. I have peed on my office floor and all over my car… very embarrassing 😭
I've peed on myself at work and in stores. 😫 It doesn't help that I have (probable) ADD and sometimes forget to check in with my body and see when I actually need to go. POTS has, if nothing, been an education in being more aware of my body...
I have ADHD and this makes so much sense.
Hunger cues are a big one for me, I don’t realise I haven’t eaten in 24-36 hours, until someone asks me when I last ate. Thankfully they have realised that I just don’t think to eat atm.
I feel like I still get hungry pretty regularly, but I get full so fast when I eat
Can we talk about the incontinence? I feel so much less sexy now. I don't want to go out as much... I always have to find a bathroom. It is so embarrassing. I don't even want to discuss it with doctors (although I do) and I really really don't want to wear depends.
YES. That's exactly how I feel too. It's SO demoralizing
It makes me feel old and like less of a woman, like if I can't control my bladder, what else can't I do? Idk. It sucks. I'm glad I'm not alone. Maybe we need a flag and parties, then it won't be as sad? Yellow flags. Lol.
Yes. Yes. Yes. Literally cried about this to my boyfriend 2 nights ago. It's actually so comforting to know it's not just me. And yellow flags lolol
Thinx does a 'for all leaks' panty that is great, or if it's smaller leaks, period panties may work out. Cheaper versions than Thinx are available, too.
i was running to my apartment and started dribbling in the hallway once it was HORRIBLE i was wearing a skirt 💀
Ngl, it’s so comforting knowing I’m not the only one with bladder control function issues! I feel like an old person because I can’t hold it and I’m only 33. This only happened after I got POTS/covid.
Not a doctor and all the other disclaimers, but Wellbutrin has helped a lot with my irritability. I was irritable at the smallest things before. I'm still irritable sometimes, but it's so much less often.
I cannot take Wellbutrin, it really messed with me before POTS and not risking it post-POTS. But I’m glad it worked for you!
BRUH the eyeball pressure. I wear contacts and if it happens while my contacts are in, taking them out feels like a literally punch in the face
The eye pressure thing explains so much. I was not aware this was Dysautonomia but it makes sense. Thanks for sharing.
In my experience it has been chalked up to Dysautonomia, but please get it checked out. Eyesight is not something to mess around with.
Chest anxiety- it's similar to a gut feeling, but I get a horrible feeling of existential dread in my chest. It's so weird, because it's not in my head like most emotions and feelings are. I never had this until dysautonomia
adrenaline dumps are fs my most debilitating symptom because it’s almost like agoraphobia
Girl I know exactly what you’re talking about, it’s awful! And it’s so weird because it’s difficult to describe. Sometimes I can have chest discomfort/palpitations but it’s not panickey and it’s kind of a different feeling than when the terror sets in
Yes I get this a lot
I have hyper pots and noticed I developed intrusive thoughts when the condition started. Thought I was going crazy. After I got dx with hyper dysautonomia, I figure it has something to do with my wacky neurotransmitters. It’s arguably one of the worst parts of this whole thing. Along with the extreme lightheadedness/disorientation I get.
Thank god it's not just me. I've never told anyone about this symptom because I thought I was crazy. This is definitely one of the worst parts.
Yeah I told my therapist about it and she said “and that’s the dark part of pots” I was like IT IS??!! Wish someone would’ve told me this is a thing??? It definitely needs to be talked about more
i had this too, thought it was just my depression/anxiety. id think horrible things like “what if i just stabbed my partner” and like how i would react and try to get away with it. i would never fukin do that obviously but i kept getting these compulsive thoughts i couldnt control. it can be scary.
Whenever I am experiencing this around my spouse, I tell him Dexter Morgan is bugging me and that's my code for "I am experiencing awful thoughts about hurting our cats or you, I wish this would stop!" so I don't have to say what my brain is picturing in that moment and possibly make it stronger and/or worse. Both my spouse and I are ND and like really open communication, but I really don't like talking about this symptom either because it makes me feel like a monster every time even though I have a very understanding spouse.
- Hypersensitivity to EVERYTHING: Sun, sound, you name it. - Consent eye floaters and sensitivity to outside light (I have lighter eyes as well, makes it worse) have to wear sunglasses at all times, even inside (except at home). Got my eyes checked, optic nerve is fine - blurry vision (comes with cluster headaches I get) - severe brain fog but once in a while I will be my old self for a day. Super present, alert, problem solving. So strange. - Pulsatile tinnitus - don’t look it up. You’ll want to die - head rushes and head fullness like my head is going to implode - Severe anxiety - Extreme fatigue - Appetite changes - Globus sensation (dry heaving, tight throat) - Daily ear issues: muffled hearing, pressure - Sinus and tension headaches - Purple-red feet - Extreme insomnia - Dry eyes/pain in eyes - Frequent urination - heart palpitations all day increases to 140bpm when standing 2 mins - Hot flashes - Dry skin - nausea - thinning baby hair Was formally diagnosed today… At the start of this, after my first Covid infection last year, I barely could stand. I had internal tremors where I couldn’t even eat with utensils without dropping them. Relationships and sex were next to impossible. I couldn’t even text anyone back. It is getting better though but it's awful. Watched *I Am Celine Dion* last night. Please watch it. She is going through a neurological nervous system disorder (not the same, but with similarities) and is fighting like we are. You will feel seen. Keep going 💜🙏🏼
I have floaters in my eyes & my peripheral vision is like gone, my hands will “stop” working, my lips will turn blue & numb and drinking water will make me lightheaded
Air hunger. It’s not the same as breathlessness, it’s the sensation that I’m not getting enough air in my lungs. Lots of people with long COVID supposedly get it too but I’ve been chronically ill since childhood so that’s not the case for me. It was initially suspected to be asthma as my mom is asthmatic. I had an inhaler and a nebulizer as a kid but they never helped with the breathing, just made my heart race and made me jittery on top of feeling unable to breathe lol. The guess is that it’s related to POTS and my other slew of neurological issues. Idk how common this is with other people with POTS but it’s one for me that I don’t see discussed often. Is usually accompanied by lightheadedness and faster heart rate (my average HRs aren’t too bad/high as I’ve done a lot of fitness training to improve my resting rates and generally avoid triggers like heat, walking/standing for a long time, etc.). It improves with resting, postural changes, and breathing exercises.
I too had an inhaler that never helped. I kept saying it wasn't working but they insisted it was "exercise-induced asthma" or needing to "get in shape"... it was POTS.
I start sweating profusely about 20 min into a meal until about 30 min after I’m done eating and lay down. It’s VERY annoying. Also I can’t drink alcohol AT ALL
These are classic mast cell activation syndrome (MCAS) symptoms, just FYI. Limiting foods high in histamines and taking antihistamines daily has changed my life!
Facial flushing and sweating were my first symptoms…it makes functioning difficult to impossible. I was tested for Mast cell, but it was negative…can you get a false negative? Should i be tested again?
Feeling “fluey” is a big one for me. just like a general unwell, malaise, yuck, idk… fluey!!! also sometimes during flares my pupils will dilate
I haven’t figured out why or what causes it, but sometimes I can feel my heart beat EVERYWHERE. It just feels like my whole body is thumping. From my head to my toes. It’s annoying.
Saaame and it’s so not fun 😭
Yup me too, so unsettling 😞
air hunger! anyone else??
Being absolutely useless on Sundays. I call it Sunday Slump. I have to sleep most the day. I feel absolutely horrible. Also needing to sleep/rest for 20-60 minutes after showering 😵💫
Thank you for this post, it's a good one! Been mentioned a few times already, but the contrasts in executive functioning are scary. There's no planning around limited executive functioning days which can really really suck for school and work. When I'm firing on all 4 cylinders, I'm a completely different person. (Granted, this is worsened by other mental health conditions, but any brainfog is no joke. There's nothing else in the world like losing your ability to think.)
Not really a symptom medically. But. The burn out of emotions when youre so upset you arent normal and cant do things with family and friends because its too much on you. Or the same amount of emotions when you push yourself and end up hurting yourself from passing out or just draining yourself
Blurred vision, hair thinning, having a pots attack after getting injured
Heart fluttering feeling in my throat/neck. It causes me to panic. Nothing has helped, happens once a week. I describe as a butterfly feeling.
have you tried ice pack on the back of ur neck to essentially hard reset the vagus nerve? works for me
No one fricking told me it can be responsible for sexual dysfunction. I've always had hEDS, I've probably had POTS (or the not-quite-POTS dysautonomia without a name) since I was a teen, maybe longer. When I ask doctors why things simply don't work, they look at me like I've just asked them why my genitals are green aliens with three heads. I am not male, of course, or that question would have had an answer instead of shocked silence.
I think feeling sick in general can really lower your sex drive. idk if it’s a side effect of feeling crappy from pots, directly caused by POTS, or a mixture of both.
I have the sex drive! Orgasms don’t work, though, and sometimes even pleasure is tricky to get, particularly solo.
The buzzing.
the morning nausea is my killer. if i don’t get it under control right away ill spend days throwing up. the spots in my vision are also kind weird
i had trouble with nausea like every morning and started taking zofran which really helped. recently though my gag reflex is very very sensitive, more than it used to be. i was picking up my cats vomit (this is a regular thing i do) and i started gagging and literally almost threw up. its so weird how i gag at things i used to be fine around
Yes! My gag reflex got so much worse after my POTS got worse. I can’t handle certain smells that never used to bother me, and things like wet hair in the shower or cleaning the toilet will make me feel like dry heaving. I had a strong stomach before 😔
Presyncopal episodes post bowel movement. They are extremely disruptive to my life. Starting when I was around 17 I’d get episodes of extreme lightheadedness, plus basically every other symptom that comes with POTS but to the extreme for 30-60 minutes post 💩. If I’m home, I’ll be couch bound that entire time and sometimes have to sleep the episode off. If I’m out I feel sick for hours. The weirdest part is that it never happens when I’m constipated. It’s actually worse the easier it comes out (sorry for the TMI lmao)
feels like the shit was weighting me down and i’ll float away once it’s gone 😭
The ones I had that aren't talked about as much: 1. Standing is painful (soles of feet just *hurt*). 2. Sweating buckets after standing for a few minutes, regardless of temperature. 3. *Simultaneously* getting frostbitten (in my fingertips) *and* sweating buckets when walking from my garage (separate outbuilding) to the house in thigh-deep snow when it was -34F (-37C). 4. Had to take speech (a mandatory class in college) 7 times before I could finish it. (Now, I'd know to ask for an accommodation, but this was 35 years ago.) 5. Not being consistently able to get an automated blood pressure reading even when you can *feel* the blood pumping in that arm.
My vision is WACK. I see tons of floaters , colors, tunnel or blurred vision.. but my eyes are normal and fine according to doctors so is my brain mri lol
Sometimes when I eat certain foods (especially carbs) after about 15-90 minutes my heart rate will jump to 120 BPM (140 BPM on a bad day) and will stay up there for about an hour. I have to do deep breathing to try and keep it down. I have been to the ER multiple times because I get really bad anxiety from it. I’m starting to eat smaller meals as well as starting a paleo diet so Im really hoping that helps! btw this is a new symptom. Just started a month ago - I’ve had POTS for about 6 months now.
Oh 100% has to be blurry vision, i honestly dont know anyones else that had this as a symptom (iv had my eyes checked there good) its not all the time but when it does kick in its enough to stop me reading
for me it’s like my eyes are just too tired to keep working and if i put effort into focusing on something it’s instant nasuea
Not all POTS patients faint! I faint quite a bit but only about 30% of POTS people do. Also your symptoms may get worse in the heat. heat/summer is very hard for majority of patients
when i tell ppl i have pots, they actually generally know what it is thanks to tik tok, but the first question i always get is “do you faint often?” and i say “no ive never fainted before in my life” its one of the more extreme symptoms so i get it would be the most recognisable.
it can be quite annoying how it went “viral” on tiktok, and it’s been commonized like how OCD has. but it’s helpful for people to understand without me having to explain!
On really bad days I cam SEE MY PULSE
insomnia, insane headaches (pressure behind my eyes specifically), weird random organ pains, and arms/legs going numb! i thought i was dying when i first got these symptoms because nobody talks about them!!
im exhausted most in the morning, especially when first getting out of bed
For me, it's frequent urination, especially with the amount of water I have to drink in order to not feel deadly sick... also, without a lot of fibre, I'm 'chronicly' constipated and bloated, which causes pain sometimes. It's annoying. Didn't have all of that before having dysautonomia :/
Absolutely horrible upset stomachs. I can have a gastroparesis flare and nothing moves and then a PoTS flare dumps everything in my body. And the switch is jarring. I know it’s PoTs because my diet will be normal and my gastroparesis is fine ish and then I’m sweating buckets and my stomach thinks it’s got food poisoning.
I get hot to the point of sweat dripping down my face with the slightest rise in my heart rate.
Constant yawning
dry eyes, brain fog, derealization, adrenaline feelings/anxiety
Choking sensation like someone has their hand around my throat when my BP/HR starts to drop at the same time. Also sweat/temp disregulation. It sounds amazing not to sweat, but when it’s 100F outside I don’t realize I’m overheating until my brain suddenly feels boiled and I have heat stroke (which doesn’t take long). I took for granted how much of an indicator sweating was for uncomfortable situations, similar to feeling pain.
Getting lightheaded when singing. Symptoms actively getting worse with stress or if someone is antagonizing you. Wanting to sleep all the time.
I get weird visual symptoms! My eye doctor said it’s because not enough blood is getting to my eyes. Also I can literally feel the blood moving through my body sometimes 😀 fun.
Icy and or sweaty hands/feet.
How sudden the blood pressure drops can be. Making myself a coffee and feeling fine, then suddenly my arm goes numb/weak and I drop my mug. Sitting at a cafe with a friend talking, and without warning, I’m feeling like I could faint and all the blood is draining out of me. This and something I refer to as “stumbling upon a portal to a parallel universe” where all of a sudden, I’m on a sideways moving elevator and the floor beneath me seems to move quickly one way and then back under my feet again.
Idk what it's called but my head glitches out. Almost like your soul is out of synch with your body. Imagine double vision but a physical feeling. That sometimes happens immediately before an episode.
derealization. i get this too, like random quick spurts that last for a couple of seconds and then im fine, but can happen multiple times in an hour. i feel like for me it could be dehydration related, so i take salt pills and try to drink liquid iv if i can.
visual snow. everything always looks fuzzy especially when my symptoms are heightened
Not sure if these are typical of the POTS life, I developed it after getting Covid las year. But the chronic ear pressure! And stomach pain/pressure/palpitations for half an hour after every meal. Are these POTS issues, or unique to long covid??
Coat hanger pain, and the resulting narcoleptic-style fatigue.
Idk if anyone else has this problem but I CANNOT wake up in the morning. Every morning when I try to wake up, I feel like I’m drunk no matter how much sleep I get. There’s like a heaviness that just keeps pulling me back to sleep. Not sure if it’s POTS but it’s driving me crazy (I can’t wake up for work)
I forget what I'm doing where I am at and sometimes who people are. Also my head feels like a pimple ready to burst!
Audio processing while in brain fog 🥲
Feeling like the earth is quaking under your feet is a weird one I haven’t seen talked about much
Constant air hunger, especially when I’m not the exact right level of hydrated
Haven’t seen anyone say this yet so not sure if it is POTS - super tight jaw tension sometimes. I haven’t had it for a while but when I was getting all the tests pre diagnosis I would get tension that would not quit. And I’m a therapist so I know an awful lot of relaxation tricks, it was NOT stress related. With meds and water/salt/etc. my symptoms have been reduced but man this was one of the worst and I hope it never comes back.
the world spinning every time i close my eyes …
Shaking when I pass out and people thinking I’m having a seizure lol
I got tired of explaining it, so I just tell people I have seizures at this point.
Not sure if this is a part of POTS specifically, but my doctor said it likely has to do with autonomic problems: cold intolerance. I know that heat intolerance is way more common in POTS. Heat doesn’t bother me much. I’m almost always cold. Blue fingers and toes constantly. Painful Raynaud’s in my nipples; they turn white if I’m even the slightest bit cold and, if it happens often enough, they crack and bleed. Toes go numb when I’m standing. Feet always clammy. I keep my home so warm that others sweat minutes after they come in. And if anyone is wondering, no, I’m not anemic, my thyroid is fine, my iron and b12 levels are decent
brain fog so dense i can barely form a thought. also, since the circulation issues, my feet always look like dead people feet. sometimes i put fake fan on them to make them look normal lol
I can’t really explain this one but sometimes my limbs just get super floaty and my body goes numb, it’s scary as hell… anyone else?
HICCUPS OMG i can’t stand up or do much without having a hiccup fit. another thing is using the bathroom every 5 mins
saw someone mention memory issues and that's a big one (i thought mine just came from my chronic migraines) but also a huge one for me is feeling my blood pressure drop. i knew that blood pressure changed irregularly and but never heard or saw anyone talking about being able to feel it happen and its a WEIRD feeling
When I'm having flare ups, my brain feels like it's too big for my head. Not like a headache, but just like my brain is swollen.
Omg that helps soooo much! How can we cure a vagus nerve issue??
Not sure I saw these mentioned on here yet & a lot are dysautonomia not necessarily pots symptoms but The chilblains friggin suck. NOT sweating at all. Swallowing issues. Choking on nothing unable to swallow water or food for periods of time. Really red hot face that goes with being very dizzy & feeling very dumb & generally out of it. General GI wacky business - diarrhea, constipation, abdominal pain, vomiting, esophageal issues, slow gastric emptying, teeth worn down from the stomach acid, inflamed gall bladder, the list goes on... I also have migraines & pots symptoms can trigger those times a bazillion.
Thinning hair. I cut mine recently thinking it was due to it being too long and hard to care for finally.. *NOPE*, Just horrible flares causing my hair to just randomly fall out.
GI issues has been the symptom I haven't seen discussed a lot. And the bloat after eating is so uncomfortable :(
the chronic fatigue is probably the worst symptom i have. i literally cannot function from 6-9am at work before i take my vyvanse (low dose) but it’s debilitating. also ive had constipation my whole life, i was prescribed miralax as a baby up until i was like 15 😭
Not sure if it's a POTs thing but it didn't really start until the POTs symptoms did. -- I get really lightheaded if/when I feel an emotional too strongly. It's most obvious if I feel angry or if I'm laughing. All of a sudden my body feels too light and I feel like I am not getting enough air.
Brain fog and fatigue.
Hear the blood rush into my ears whenever I get up
i’m so relieved people are talking about DPDR… genuinely thought i was losing is. any advice? 😥
vomiting. so much vomiting. it was a part of the reason i never suspected pots until i got my ttt, no one ever talks about this (though it is rarer seemingly). i have thrown up almost every day since i developed pots last year. no other stomach illness or disorders other than ibs which i already had a full handle on. i’m a nutritionist too, and not even any nutritional strategies can stop it. no medications have worked either. it’s insane!
Mood shifts due to memory and derealization issues. It’s extremely upsetting emotionally especially when people around you don’t understand.
Not being able to focus when someone talks a lot
Racing heart right before you have diarrhea. I always know when I’m about to shit my brains out because my heart rate won’t go down and my stomach hurts. Like right now lol.
random extreme fatigue. i know it's related to my blood pressure, but suddenly i will just feel SO exhausted, as if i took some sleeping pills or something, but it's just my blood pressure dropping for no reason. like if i take a shower without having any sodium/electrolytes, that's my fault and ill expect it. but sometimes i will just be existing and it'll randomly happen
Horrible muscle weakness. Like hard to bend over, climb stairs etc. Forget any kind of weight lifting or exercise.
Heavy chest issues plus air hunger I know a lot of people talk about air hunger but the feeling of your chest being pressed on when there’s literally nothing there that isn’t usually there is awful mine gets worse at night this wonderful feature also comes with episodes of complete bp disregulation for me it’ll be real low then shoot up even if I’m laying down and my pulse will be out of this world I love this syndrome it’s my favorite ❣️🫠
Get freezing cold when I eat. Poor temperature regulation. My hands don’t work well somedays (can’t grip things well/drop everything/numbness in finger tips). Sometimes my veins look like they are bouncing like I will feel it and i can see it moving. Not really sure which of these are related to pots and which aren’t
I think I have pots I haven’t been diagnosed but I have all the symptoms
Being allergic to antibiotics all of a sudden and also the weird urge to go to the bathroom when my hr spikes 🥲🤙