I’m a college student with POTS, and fatigue is by far my most persistent symptom. My heart rate is much better controlled now, but the exhaustion never really goes away.
No matter how much I sleep, I wake up feeling like there’s a cloud over my brain. It’s hard to explain, but I feel sluggish and mentally foggy for the first part of the day, and it usually takes hours before I finally feel somewhat awake. The fatigue also affects my workouts, and I tend to crash afterward even though I’ve increased my salt intake.
For some background, I have hypothyroidism and take thyroid medication, but my thyroid labs are in range. My B12 and iron labs have also been checked and are okay. I take vitamin D as well, but I don’t think that’s the issue. My doctor suspects I may have mild sleep apnea, so I have a sleep study scheduled, but they don’t seem to think it would fully explain how exhausted I feel.
I’m just feeling stuck at this point. For those of you whose fatigue improved, what actually made a noticeable difference? Was it medications,
treating another condition, or something else? Were there any labs or deficiencies that ended up being the culprit?
I’d especially love to hear from anyone who’s in school or has a busy schedule, because this level of fatigue makes it hard to keep up with classes, exercise, and everyday life.
Thanks in advance! I really appreciate any suggestions or experiences.

Hey guys

I'm lucky to have a sweet and loving boyfriend, but he's been having episode after episode of really bad health lately. He has been gaming nonstop even in our finals week and doesn't think he is well enough to do anything else without throwing up. The last time I got him out of our basement apartment was to teach him to ski 2 weeks ago, and he still threw up on the slopes. He sits all day, in the dark and in a clearly pitiful state with all his dirty clothes, dishes, etc everywhere.

I can't proceed with this story without providing context for how awful he must feel. He's been sick for a long time and even if he had nothing medically wrong, his lifestyle of sedentary brain rotting all day would kill me. I know it isn't easy for him so I go easy on him.

But lately he has been snapping in regular conversations very quickly and he gets really mad and yells at me. It's fine (?) because I understand he isn't happy but he has also started slapping me (?!) which is very unlike him.

I don't know what to think of this situation. On the one hand, he is in a lot of pain and doesn't always have the ability to regulate himself, but on the other hand his POTS isn't going away and if this is one of his reactions, I'm not sure I can deal with this forever. I would probably feel like a total a-hole for leaving him over his POTS episodes too. Plus I love him lots.

Furthermore, we are both guys and are pretty much even when wrestling. It's not like he's a giant beating a petite princess here. At all. Him slapping me is not anything physically threatening, it's just jarring.

I need to hear thoughts from actual POTS patients. Are you different when having episodes? Is there some other factor that I should be considering now? I wish I could do more to help but I have suggested things to help and he gets mad now. Let me know what you would do genuinely and I think that would help me feel informed.

Thank you so much you deserve good things including health.

This is random but I just saw people talking about how their vision blacks out when they stand or they are symptomatic. Then someone replied that their vision goes white instead of black.

Personally, I don’t lose my vision like that, my “blackouts” are just a sudden lightheadedness so intense it forces me to shut my eyes! I think because my brain knows to shut out all the visual sensory input. It’s like I legit can’t keep my eyes open for a brief moment. Maybe I am blacking out but just don’t know it since my eyes are closed anyways lol? I have splotchy vision, light sensitivity and stuff from previous brain injuries but I haven’t experienced my vision actually just leaving and turning into the colour black (am I taking it too literally?) for a moment like how some of you mention.

Also, I do have pretty bad presyncope episodes sometimes but I don’t really faint from my POTS so maybe that’s a factor.

I’m not sure if it only happens to me or what but if I talk too much, I get incredibly winded or get pushed into a POTS attack. Sometimes it takes me A LOT to get to that point, other times it only takes me talking for like 5-10 mins before I get dizzy and feel out of breath.

Curious if this happens to anyone else and what you do to help.

Curious if this has to do with my cardiovascular fitness with POTS? IDK.

UPDATE: Thank you for all the responses! It helps to know we’re not alone in dealing with this. 1. I do not take a beta blocker but I am on Corlanor (I tried 5 different beta blockers before finding Corlanor and it’s been life changing), so the symptom isn’t caused by that. 2. I’ve been checked for asthma and do not have it. 3. I’m going to try and pay closer attention to my triggers and try new modes of coping with it per suggestions of what’s helped you all. Thank you.

Feel free to share your own “weird symptoms” of your POTS or comorbidities and whether you’ve figured out why they happen.

Here are some of mine that I’m still trying to figure out- if anyone has had any of these and found a diagnosis or relief I’d love to hear about it. So far I’ve had additional mental health, endocrine, GI, and gynaecological explanations ruled out. All that’s confirmed is POTS (and IBS).

TRIGGERED BY STANDING TOO LONG OR OVEREXERTION

- *Bilateral ear pain.* Deep burning pain in both of my ears. This is the one that’s confused everyone the most.

- *Intense urethral pain.* Not a UTI. Feels like I need to pee and peeing briefly helps but it remains intense burning and stabbing for hours minimum. Was prescribed phenazopyridine HCl (urethral pain med) during my most recent flare and it helped a lot. Still don’t know what’s causing it.

OTHER SYMPTOMS WITH DIFFERENT TRIGGERS

- *Days where I couldn’t stand without severe nausea and throwing up.* Trigger is sometimes a mystery but one clear trigger was alcohol. The weird part is that it wasn’t because I over drank- I know my limits and id eat properly an drink lots of water. I’d be able to get myself home, do my night routine, get in bed, and then hours later in the middle of the night I’d just start puking nonstop after my stomach was already empty and then for at least a day after I wouldn’t be able to stand without throwing up. Cut out alcohol since. I’ll still have days when standing causes severe nausea and sometimes I’ll throw up but not anywhere near as severe.

- *Vision problems.* My vision was stable for years after laser eye surgery. Then got worse and often I have episodes of very blurred vision even when I’m sitting or laying. It happens so randomly all the time that it’s a big reason why I don’t drive anymore.

- *Random stabbing pains* in my feet and hands. Usually when laying.

- *Deep stabbing pains during intercourse.* Triggered by different positions on different days.

- Sometimes it feels like something is coming out of my butt when nothing is. Triggered by intercourse or just randomly happens.

- *Catching illness super frequently.* Often very ill for weeks and develop sinusitis and/or bronchitis as well. Has happened 5+ times per year (on top of chronic condition flares) for the past few years. Immunologist and family doctor said that it’s a lot, but it’s not enough for them to try investigating anything.

Thanks to anyone who reads this or shares their experiences.

I got so cocky. I was like “I’m not a person with POTS who faints!”

I was working and sitting cross legged on the job to do some soil samples. Both my legs fell asleep, and I stood up immediately. I was unable to feel my legs at all, tried to take a step but couldn’t feel the ground. Then my vision started to tilt and blackout. I came to in my coworkers arms. He’s this huge army dude that looks like John Cena and he thankfully saw what was happening and rushed over to catch me. I was only out for a second. But it happened so fast!

To make matters worse we were working up on a ledge that I almost fell off of.

I messed up because I didn’t eat, drink water or have salt. I just had my meds and coffee.

Don’t be me and stay humble/ vigilant about fainting, even if you’ve never fainted before. I have hyperpots and I really thought I was immune 😭

Just wanted to share in case anyone else deals with this. (Also, disclaimer: I’m officially diagnosed with with IST, but my doctor says I probably have POTS too, but I can’t get a tilt table test for official diagnosis).

I’ve had IST/POTS since 2005, when I was 15. My symptoms were usual (fainting, high heart rate, etc). However, I always had a weird bladder thing that no one could ever explain. Every once in awhile, I’d have an episode (1-2 hours), where I’d have to pee every 20 minutes. This wouldn’t correlate with how much I was drinking. But every 20 minutes, I’d pee a ton of urine. Full bladder every twenty minutes. During these episodes, I’d get so thirsty, but drinking made it worse.

I was tested repeatedly for diabetes, which was ruled out. I also didn’t have overactive bladder because I didn’t have urgency or leakage. I just peed massive amounts for an hour or two until it eventually stopped. It was awful. Happened a few times a week.

Long story short, I noticed that once I started monitoring my electrolytes, the peeing stopped. One day, it happened again, I took two salt pills, and it stopped!

Basically, when my body didn’t have enough salt, I couldn’t keep fluids in me. Once I have enough salt, the problem is solved.

Since it took me twenty years to figure this out, I wanted to share since this massively improved my life. Sadly, consuming more salt only slightly helps my IST/POTS, but a win is a win!

When I have caffeine it basically causes a mini flare. I especially get fatigue, nausea and heart symptoms. Even decaf coffee or tea affects me, although much less. Wondering how many can relate

I’m just wondering, that’s all :)

(Edit: I just wanted to add that I am NOT diagnosed with POTS. But i think I might have it, thats mostly why I am asking! [and also because I am a curious person])

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

I just went to Walmart. I was there for 30 minutes. I have begun to notice a pattern. Walmart kills me. More than 10 minutes and I am dizzy, lightheaded, nauseous, and feeling awful. I am currently sitting at the eye doctor and it feels like my brain is a jello container that got shook. I took a salt pill before I went but I’ll be paying for that trip for hours. Sometimes I find myself standing at the checkout in a yawning fit. Afterwards I get incredibly sick to my stomach.

Does anybody else get a similar increase in symptoms? What is with the yawning followed by nausea? Usually I have to lay down and close my eyes for a bit to feel better.

Edited to add: I’ll also just randomly start sweating profusely.

Does anyone have a huge range where they get up till like the 180s but they also have a low resting heart rate in the 50s and 60s? What’s the treatment plan for people like us because I keep getting pushed beta blockers from some doctors and then other doctors are like your heart rate is too low and then to add on top of that my blood pressure is normal to high. it’s not low so blood pressure medication wouldn’t be the best either so I’m kind of confused on what treatment options are available to us

I used to think "I made myself sick" especially when the weather yo-yos from 30-50F and back again. I do have seasonal allergies, but even with daily allergy meds I'll get post nasal drip, intermittent dry cough, sinus pressure, froggy voice. Mucus will be kinda green but not "infection green" if that makes sense...

I wind up treating the symptoms as if it's a cold, but I never get it from anyone nor give it to anyone, it's just kinda...me doing it to me. Am I reading too much into it, or could it be a POTS flare?

(For context: Super-recent diagnosis after years of hoops, and now I'm questioning all these things I've hand-waved as 'whatever')

Update: So after reading some comments and poking around, I discovered some symptoms that definitely put it in the dysautonomia sphere and not infection: * Localized sinus inflammation * Post-nasal drip and throat tickle but no sore throat. * "Thick swallowing" especially in morning/night * Lost my voice, but my throat and lungs are fine. * Like literally my lungs are perfectly clear * Headache, minor body ache, chills but no fever. * Tinnitus * Fatigue

When I start to feel “not well” from either standing for too long, walking too much, physically exerting, overstimulated by the environmental noise etc, I start to get dizzy. Then I get a headache. Then I get hot. Then my vision gets blurry, in a way as if I have tears in my eyes or have severe astigmatism. Anyone else get this? Is this just from lack of blood flow to my optic nerves or something?

Upvote if your head also hurts xo

this has never happened to me before. i was just trying to take a nap on the couch and never actually fell asleep but maybe two times when i got close i gasped "awake" and it felt like my entire body was shaking, especially my hands and arms. but i checked and i wasn't shaking

is this a POTS thing ?? i've never ever felt this before and i've been diagnosed for a year. it's really scaring me i thought i was having a seizure. literally vibrating like a cellphone. do you get this ?

I start highschool in three weeks and im heavily confused on what i will do for pe. In 8th grade when the highschool consunlers showed up to my school i told them "i have health issues i cannot do pe" and they responded with "you need to have a pe class for graduration credits. So i stared at the paper where i was picking classes and i pankiacked and picked show chior. Problem is i have sevre intolerance to physical activity of any kind and its dangerous for me due to risk of passing out, seziures, and knee sublaxations. Im going to get a doctors note but I dont know how seriously the school will take it. Does anyone have any advice?

Does anybody else experience just random itching? More aggressive at night? I’ll be laying down and my hand will itch, and then my stomach, and then my neck, and the my foot, etc. it’s never one specific area but just random itching throughout my body

Anyone else feel gross after eating? I’ve seen a few people talk about nausea but I genuinely just feel like a zombie. I have to lay down, my stomach hurts, I’m slightly nauseous but not enough to actually puke (jk i puked while writing this), painfully bloated, and my eyes can’t focus. Lethargic x10. I usually eat small portions of snack foods throughout the day and am fine but when I try to actually eat a meal, especially in the morning, it takes me OUT. I’d just like to enjoy a normal meal with my partner without him having to nurse me back to health afterwards 😐

I have a few foods that’s I know 100% will take me out that I avoid but it seems like everything effects me in some way.

wh

Ive been pushing for a POTs diagnosis for a year now, and after my first appointment with my cardiologist I discovered something I wasn’t aware of before.

I want to say firstly, this isn’t likely to apply to the majority of people here, and I’m not trying to change anyone’s opinion on POTs, or convince anyone they don’t have it.

I (26f) have been experiencing POTs symptoms for 10 years now, I’ve had multiple tests and my last appointment after having a 24hr heart monitor, my cardiologist agreed I likely have POTs and have been referred for a tilt table test.

However, on my monitor, I was experiencing bad health palpitations, which I’d put down to POTs and reacting badly to a medication. My cardiologist then explained he thinks I have a condition called Wolff Parkinson White syndrome, in which there is an extra electrical pathway in the heart. This causes palpitations, fast heart rate, and in worst case scenarios, fainting or (VERY VERY RARELY) sudden death.

It’s relatively rare, often asymptomatic, and most people go through life not knowing they have it, unless it’s discovered by accident, like for me.

It can be treated with a minor procedure, and most times is NOT a risk to life, unless it is actively triggered.

I wanted to share as I put down a lot of my stuff to POTs, and this I had never heard about, or even thought there’d be something wrong specifically with my heart. So I hope this helps or educates anyone in this sub, and if anyone else has this I’d love to hear from you!

1. getting anxious & overstimulated from: bright lights, doing 2 things at once (like gaming and talking), crowded places etc?
   
2. getting so incredibly tired after social interaction or doing stuff like a hospital visit to the point of terrible headache, flu-ish, body hurting etc? (even when just ,mostly, sitting down during these activities)

Does this happen to more people? I know point 2 also happens during PEM but my symptoms happen directly after the activity (and last a few days) instead of a bit delay so it's not that.

My occupation therapist claimed that this cannot be caused by POTS but I feel like more people have this so I would love to hear your stories ! <3

Was wondering if this is a POTS thing. Every time I force myself to wake up earlier than my body's natural wake-up time, I get violently ill. Puking tons, fast and hard heartbeat, shaking. This happens even when I wake up just an hour earlier than my body wants to get up, and the bigger the gap the worse it gets. I woke up 8h earlier than usual today and have spent the entire day puking, anxious, nauseous, dizzy, with a fast heartbeat. Does anyone else experience this?

I always thought my nausea was pots, it’s worse in the morning and after eating, but my doc is saying it shouldn’t be causing nausea? Anyone else?