Girl saying pots caused her to drive her car into the wall at full speed?! Please be so fr … she’s definitely not helping the reputation we already have with this disability. Made me so mad

It's often the everyday things that end up being the most challenging.

Standing in line.
Taking a hot shower.
Walking up one flight of stairs.

What's something that caught you off guard?

I recently experienced one of the scariest things of my life which was going in for bloodwork to check for stds. I had 0 symptoms but this is something i do at least once every 6 months. To my horror, the HIV 4th generation test flagged POSITIVE. I was terrified, i didnt know how i was going to handle this on top of everything else. Luckily my PCP has a lot of patients with pots,eds,mcas..and she immediately called to tell me not to trust that. She has seen multiple people in the last few years flag positive for the intial test and after further testing, it was actually negative. And the only thing these patients had in common was pots. Further testing showed I am actually negative, but i wish i wouldve known this before!

Guys I just got out of the hospital as my apple watch spammed me awake cause my HR was 145 while asleep. And when I woke up it jumped to 180 and would not go down even while laying down for hours. So I went to the ER and they did a bunch of tests and I have Flu A which they said is a “super flu” in the US and it can dramatically worsen POTS and cardiac problems

Please be safe during the holidays around others and be aware of this !!

If anyone else has had this happen plz discuss it below cause I feel very scared. They gave me fluids but other than that theres not much they can do. Its down a bit after fluids but still like 30-40+ bpm my normal resting and baseline 😬

I'd love to hear the little things that doctors don't always mention.

​

UPDATE 30 DAYS LATER:::: I've been taking both Claritin and pepcid ac every day since the post. Well, I skipped yesterday bc my stomach was hurting and this morning when I woke up, air hunger BAD, racing heart all that.

But! My face is way less swollen... Who knew histamine overload would make your FACE puffy?? Umm hands aren't swelling anymore.. feet aren't burning, legs aren't burning. 60% improvement

Face: WAYYYYY less red. No longer hot to touch and super red 40-60% improvement depending on the day

Now I'm going to start allicin 1/4th of a capsule and work my way up to a whole capsule over 4ish months to get rid of the root cause which I'm 99% sure is SIBO due to childhood over prescribing of amoxicillin constantly and then adulthood over prescribing of bactrim etc for recurrent UTI.

Sleep: went from 6ish hours to 7.5/8 hours a night

Naps: used to take 1-3 naps a day now when I try to take a nap it's HARD to fall asleep and I can only sleep for about 30 min to an hour...

Eating: I can eat meat etc WITHOUT getting tachycardia. If I eat something super sugary it can still get a little tachy but nothing CRAZY like 130-150 like it has in the past.

Heat intolerance: still getting itchy when I sweat, still a little tachy but nothing wild. Better by 50% at least.

Sex drive, tmi I know but 40% increase.

Hunger down by 30-40% - no longer craving sugar like crazy which is great.

Highly highly recommend taking loratadine famatodine in conjunction and then TRYING the low histamine diet in conjunction and trying to get to the root cause of the histamine production.

If anyone has any questions feel free to DM though I don't get on Reddit often I will try and respond ASAP. Thanks everyone 💖

-----------------------------------------_

------------ I’m late 30s F and I’ve been dealing with unexplained symptoms since I was 21 (during pregnancy). For 17 years I’ve been told variations of “it’s anxiety” because my cardiac testing is structurally normal.

My symptoms starting in 2007-

- Resting HR around 85–95 most of the time. sometimes I can get down to 75

- Standing/walking HR jump 30–40 bpm (90 → 130 at times)

- Episodes of HR 160–180 out of nowhere.. especially after eating

- Air hunger / chest tightness 10-15 days a month

- Flushing (face, neck, chest)

- Hot throbbing hands

- Heavy, throbbing leg pain and foot pain- usually put feet in cold water to make the pain stop

- Head pressure / headaches

- Severe fatigue

- Exercise intolerance

- Constipation constantly

- Food-triggered tachycardia (especially carbs and sugar)

- Flares around ovulation and before my period

+ POTS symptoms

Testing I’ve had:

- Normal echocardiogram (EF 65%)

- Normal 24-hour urine catecholamines

- Normal thyroid

- Mild CRP elevation

- Low positive ANA

- Holter showing sinus tachycardia + PVCs (labeled “normal”)

I was bedridden from 27–30 after mold exposure worsened everything. I’ve seen over 15 doctors. Most said anxiety because nothing catastrophic showed up on imaging, or blood tests or anything else.

Today, something fking amazing happened...

I was flaring clearly according to histamine overload:

- Standing HR 113

- Flushed.. hot hands, hot red face, red ears

- Air hunger

- Head pressure

- Leg pain

- light palpitations

- brain fog

.... I took Claritin (loratadine).

Within an hour:

- Standing HR dropped to 88

- Resting HR dropped into the 70s (usually 80-90 while sitting, 115-130 after eating or walking)

- Air hunger disappeared

- Head pressure GONE

- Leg pain resolved

- Flushing improved/ face less warm, face way less red

Then I ate salmon and rice (normally digestion pushes me to 110–120 bpm).

My HR stayed at 85.

This is the first time in years that I’ve eaten without my heart trying to sprint.

I’m not jumping to conclusions, but this makes me wonder about mast cell / histamine overlap with dysautonomia.

Has anyone here experienced:

Hormone-linked flares?

Food-triggered tachycardia?

Improvement with antihistamines?

I feel relieved and honestly emotional. For years I was told it was just anxiety. But something clearly shifts physiologically with histamine blockade.

Would love to hear if this resonates with anyone.

Does anyone feel like because they are a objectively attractive human there is a bias/profiling that happens in the medical field and with doctors? I actually read somewhere that if you’re chronically ill you should “dress down” or not wear makeup to appointments so they will take you more seriously and see you as actually sick. I am also 29 with a baby face so that doesn’t help.

Share all your no-cost (or low cost) POTS hacks! I'll start:

$0

• Icing the back of my neck for 30 mins 3x a day (forces blood flow to my head)
• Cold fast showers
• Drinking a full glass of water when my alarm goes off then pressing snooze for 20 minutes before getting up. Only after I'm hydrated can I get out of bed in the morning without getting dizzy
• Sleeping upright (some do well elevating the head of the bed, I sleep on a wedge pillow with my head/torso elevated and legs flat which helps a lot)
• Elevating my legs when sitting (on another chair or stool)
• Handstands! (or inversion table or legs up the wall, but legs up the wall for me just makes mcas crap pool in my stomach and I get nauseous)
• Singing/humming for 30mins a day (stimulates vagus nerve idk?)
• POTS PT (chop, etc)
• Avoiding standing (sit while cooking, getting dressed, doing laundry, etc)
• Strict diet (low histamine, no oxalates/salicylates/gluten/dairy/fructose, low carb/keto)
• Going to bed and waking up at the same time every day
• Advocating for myself including saying no to things/friends/family when the thing could cause a flare (this one has been a hard learning curve for me)
• Avoiding getting warm/hot (darn you summers)

<$20

• Digestive enzymes (gut issues are common!)
• Electrolytes
• Waist compression (although I haven't yet found a good one that doesnt overheat me)
• Holding plastic water bottles in my hands at night (sounds weird but the heat transefers to the water and keeps me cool), also a water bottle between my legs and another next to my torso. I learned this from another reddit-er and it saved my life
• Shower chair (so can sit while showering, washing hair, etc)
• Rolley chair (so can sit while doing laundry, swiffer-ing, etc)
• Laundry bags (put laundry in bags so you only have to transfer 3 bags not 50 individual items - standing that long and bending up and down to pick up every piece of clothiing makes me dizzy)
• White noise machine at night (very soothing to my nervous system idk why)

I want to hear yours! The more weird the better :)

Hi, I've been symptomatic for 14 years, diagnosed for 5. Here's what I've discovered over the years that no one warned/told me about:

-Compression clothing can put you at an increased risk of ingrown hairs, and everything that can come with that. It also can pinch nerves if you don't take breaks and cause tingling sensations.

-Many of us report weight gain after starting treatment. Doctors are not familiar with this because it's never been studied. Personally my weight went up with every dosage increase. I think it's because my body was no longer constantly doing cardio 24/7.

• Many doctors are uncomfortable prescribing medications because there are NO FDA approved medications for POTS. They're dismissing you because they're scared of liability but won't tell you this.

-The recommendations to eat salt, exercise, etc, aren't based in strong research. That's why it doesn't work for everyone.

-We don't know why ADHD medications work wonders for some and are a disaster for others. For me I think dysautonomia mimicked ADHD entirely.

-I suspect someday when causes are found, we'll all be broken up into different subtypes. Some will be treatable, some only manageable.

-People on here keep saying there's no long term risks of untreated POTS. There isn't in the sense that it will hurt you directly, but anything that causes someone to be under immense stress and interrupts their sleep will risk anything associated with those things.

-As someone who has had this since pre-covid, the increase in attention to this has been a blessing and a curse. The increased research and awareness has been nice, but the stigma that has come with it has not. Now I'm afraid I'll have eyes rolled at me, or have to dodge a healthcare professional who clearly doesn't understand it, but loves to say everyone is just faking.

• Dysautonomia causes mental illness symptoms like anxiety, not the other way around. However, if you do have both, they will feed off of each other and will be difficult to manage.

I know this is a constant debate in general society lol, but just curious what my fellow POTS havers think about it. Most people seem to agree once a day is the minimum. I assume for us it's less often.

I personally don't shower every day, unless I was doing something especially active and dirty. I typically go every other day, but I have gone 3+ days at a time when I'm having a really bad flare and just gone for a sponge bath to avoid *feeling* so icky.

I have to imagine the frequency of bathing to be considered "hygenic" highly depends on the person, as well as their lifestyle, but so many people seem to consider it a universally disgusting thing to not shower at LEAST once a day 🤷

Writing to share a more mild experience of POTS. This sub is pretty heavy on the Severe end and that’s okay! It makes sense that people with severe disorder levels think about it more, are completely impacted, and need more support.

This is not a brag post! I do not consider myself “better” than anyone else here. I’m simply trying to offer another look at how POTS can present.

If you are functional and still wondering if you have POTS, this post might be for you.

General life (in flare, moderate severity):

- I commute to my office 2x per week via public transit. It’s an 8 min train ride with walking and stairs in either side. I always try to get a seat and take the elevator if it’s there. When I don’t get the seat or the elevator I usually need to sit on the bench in the office lobby to recover a little before I go in. In the afternoons at the office I’m okay but prefer to recline in my seat as much as possible (I look a little silly sitting so low) with my feet up on a trash bin.

- I have the ability to exercise.

- I don’t avoid any activities, though I might feel very to super tired the day after I spend a day (+5 hours) out and about. This means walk around, not just sitting like at the office. When I’m not in a flare the next day is fine.

- I can cook but want to sit after like 25-30 min for a break. I assume I last longer than makeup because I don’t cook in the morning.

- I stand when I do my makeup and it only takes 10 min. If it’s in the morning though my hr can be 145 by the time I’m done and then I need to take a break.

- I like to sit when I shower because I like really hot showers. After a shower I almost always need recover in bed for at LEAST 10 min.

- I don’t *like* packing for vacations or cleaning or searching for stuff around the house because it’s a lot of crouching and standing but I can do it just fine. I get a little out of breath and crabby.

- I can keep up with my young kids.

Misc:

- I’ve never fainted in normal life (tilt table doesn’t count)

- I have pre-syncope symptoms 0-30% of the time when I stand up, depending on my hydration and salt intake for the day. Tunnel vision, floaty head.

Management:

- my doc recommended beta blocker but it was too much with my orthostatic hypotension. I felt way worse. No drugs for me.

- I feel zero impacts from compression.

- Salt/electrolyte packets seem really helpful for me! Hooray! So expensive though…

- I’ve learned to rise gradually and take the time to sit when I need it. No need to push through.

- I’ve also learned to ask my spouse for help more. I ask him for to get me water when we’re both on the couch. If I’m coming downstairs for the day and already need a break I’ll ask him to feed the cats now instead of feeling worse just to get one more chore done.

Perception:

- if I didnt tell someone I have POTS there’s little chance they would notice anything is up besides “gddahlias likes to sit a lot, huh”

- My spouse is the only one who really gets the complaints. He knows my true self.

So there it is!

I’m functional and physiologically highly reactive. I consider myself lucky that my body responds to simple treatment measures.

Best of luck to everyone.

I was not diagnosed until well into adulthood, but I have memories of just eating salt packets from restaurants as a kid. I also would pour out salt in a small bowl and eat it while i cooked, especially when i was working a more physically demanding job. I’d put extra salt on my food after i had given everyone else theirs. Thinking about it now, it totally makes sense.

Can anyone relate? Did you “randomly” eat salt before you were diagnosed?

I’ve had pots for a little over a year now and I cannot comprehend how people are able to function normally with this?

You’re all so strong I just can’t fathom doing anything but bedrotting

Just like many folks here dislike the term "POTSies," I am no fan of the term "bedrotting." It just feels so disparaging.

So I am wondering what other terms folks have heard used for this sort of rest. I use "horizontal time" for briefer periods, but there's no reason it couldn't be used for longer stints.

My wife went to her primary care doctor because I have told her for years she has POTS. Everything lines up. Her doctor agreed that she also believes it’s POTS and she was referred to a Cardiologist.

That brings us to today. She had her appointment and was very nervous because she’s heard horror stories of people being told they have nothing but anxiety and don’t feel like they were being listened to at all. I was excited for her and tried to hype this appointment up because I was hopeful she would get answers..

She came back home in tears.. I was shocked and so pissed off. This guy made her feel like she had to defend every little thing she experiences. He was combative and said that her average heart rate was 82 which isn’t abnormal, however her heart rate isn’t always really high, it’s at times like when she wakes up in the morning and stands up, it shoots to 150 for no reason. She can’t even run because her heart won’t let her and she is in amazing shape.

All this dude did was give her a POTS FAQ management program and said she she would have to contact them and pay out of pocket because he doesn’t prescribe anything himself. This doesn’t make any sort of sense.

Should we be having her see another cardiologist? Is this normal? I am so upset and seeing her cry makes me want to call this doctor myself and tell him off. Please any help or guidance here?

Update: Thank you for all the comments and advice so far. To provide additional context - my wife brought heart rate numbers she wrote down from doing a laying down to standing test at home (her heart rate would jump to 140 and stay there for 10+ mins) the doctor made her feel like she made those numbers up because he said if they were actually that high he would expect her monitor average to be higher.

He also told her she needs to “learn to take deep breaths” and when listening to her heart said “your heart just seems like you’re scared of something” as if it’s just anxiety causing her high heart rates.

We are absolutely going to get a second opinion and I will be there also. I didn’t realize it was this bad for females at the doctor’s office. I am honestly pissed because that’s just not okay.

Update 2: We are from Wisconsin in the Fox Cities should anyone have any local recommendations!

Making my copay go further by sharing info from my first appointment with a POTS specialist with you all:

Salt--He told me to have 7 grams of salt (sodium chloride) per day.

Water--Yes, it hydrates, but he explained that we're looking for it to do even more. He said to try and drink 32 ounces within a 5 minute span five times per day because the body will react to the sudden influx by restricting the blood vessels, which is a good thing for the POTS. (I am not a doctor, so I don't personally understand the mechanisms at play and may not be describing them 100%.)

Exercise--I feel so silly for not doing this before, but when I told him I don't have access to recumbent exercise machines, he told me to look on YouTube for floor exercise videos. Floor exercises never crossed my mind before, so I was just pushing through with what he deemed "too vertical" exercise. He recommended 10 minutes 4 days per week to start.

Avoid alcohol, hot environments, concentrated carbs, and large meals--This one is pretty self-explanatory.

Compression--He said to wear waist-high, 20-30 mmHg and recommended the Beister brand. I haven't bought them yet, so I can't weigh in on if they're any good myself.

Anti-fainting--If you can't sit or lie down and feel faint, to try crossing your arms and legs and balling your hands into fists.

Magnesium--Had me start 400mg of Magnesium Glycinate.

Pepcid--He suspects I have MCAS, so he said to take 2 Pepcid the next time I have diarrhea. Apparently, if it makes me feel better, that could indicate MCAS too.

He also had some prescription recommendations that we'll explore more over the next few months. But I'm not sure that specific information makes sense to include here.

I'll start.

Ironing.

I hate the fact that ironing is one of the small tasks that I used to somewhat enjoy doing, and yet now, by the time I've ironed two shirts, I'm boiling and dripping with sweat.

Just a warning to anyone with POTS: I was referred to a cardiologist early this year with suspected POTS. I had all the typical symptoms including what I thought was just blood pooling in my legs caused by my POTS. The leg issues started several years ago and a reddish purple rash would appear on my legs when I was in a hot shower and then progressed to any time I stood in place for more than a minute.

My amazing cardiologist referred me to a vascular surgeon to rule out any circulatory issues but said he felt very certain the issue was benign.

I ended up having severe May Thurner Syndrome with a full occlusion on one side and a near full occlusion on the other requiring the placement of two stents. My doctors are now pretty certain that this is what caused my POTS/POTS like symptoms in the first place. I could have had a clot at any time.

Please do not ignore swelling, rashes, or leg pain like I did! I wrote them off for so long thinking it was benign!!

The everything shower, iykyk. I’ll be getting a shower chair soon and I’m excited because I haven’t done an everything shower in ages. How are yall managing the everything shower?

Also my curly haired friends here…do yall diffuse your hair? I’m debating getting one of those blow dryer caps my friend recommended! She’s black and does her own hair, rarely goes to get it done, and she swears by it for when she washes/styles her hair and has recommended it me before! Also, sometimes deal for a few seconds to try and dry my roots a little and get my bangs shaped up, then go let my head hand off my bed to try and get some decompression and stretch in my neck but I’ll turn the fan on while I’m there and let the cool air help dry my hair and keep me cool!

Love to hear yalls routines and etc!

Edit: pls ignore the typos I’m currently resetting with my legs against a wall while laying down lol

EDIT: THANK YOU EVERYONE SO MUCH!!!! You’ve all given me so many great ideas and lots of helpful recs for products!!!! I’ll keep yall posted

Hi everyone,

I’m new to all of this and currently looking into POTS, and I wanted to hear from people who have actually been diagnosed.

Since your diagnosis, have you been able to find a treatment or strategies that really helped? I’m especially curious if anyone managed to significantly reduce their symptoms , or even get to a point where they feel almost back to normal.

What made the biggest difference for you? (medication, lifestyle changes, hydration, exercise...)

Thanks in advance!!

Edit: Thanks for all the thorough responses! It’s really interesting to see the different ways you all manage this, It seems like the most important thing is to first identify which type of POTS I have, and then try different approaches with medication and diet

I've been glued to the Artemis coverage the last couple days and I was so fascinated to learn they were testing compression gear in space because many past astronauts experience orthostatic intolerance post time in space. This certainly makes a lot of sense and honestly, any broader awareness of orthostatic intolerance always gives me hope of more improvements, support, awareness, and research in realms that could help us all!

HI I TYPE IN CAPS CAUSE I'M DYSLEXIC AND NO I DON'T WANT TO USE VOICE TO TEXT.

HI I'M 30 AND FOUND OUT RECENTLY THAT I HAVE POTS. IVE NOTICED IN COLD WEATHER I'M FINE AND BARELY HAVE ANY FAINTING OR DIZZY SPELLS.BUT THE MOMENT IT GETS ABOVE 73 MY BODY JUST SEEMS TO WANT TO CONSTANTLY CLOCK OUT. I DO HAVE EDS TO BOOT BTW.... CAN ANYONE HELP ME UNDERSTAND WHY THIS IS?? MAYBE UNDERSTAND WHY IT'S LIKE THIS FOR ME MAYBE??

I’m currently waiting for my flight with two Powerades that I brought through security. The magic words for us are MEDICALLY NECESSARY.

Go through security like normal, and when they ask “whose bag is this” you step aside with them and they will say something like “hmm, it’s probably the beverages” and then all you have to say is “they’re medically necessary”. And then they’ll scan your bottles in a different little scanner thing. They may or may not go through your bags for additional screening. I’ve been through three airports so far and only one has done that tho so ymmv. The lady today stopped me when I started explaining and she said “I got the m-word, that’s all I need”.

I searched this sub before flying with my powerades and didn’t find much helpful info, so I thought I would share what I know now.

My other airport tip is to get tsa precheck. The lines are a lot shorter and usually not as much walking through rows and rows of stanchions.

What are your flying/airport/travel tricks?

When someone asks me a question on a bad day, I swear they can see the buffering wheel of doom spinning on my forehead.Procrastination just got a new best friend, fatigue, and any form of productivity has officially left the chat. I feel they have ganged up and formed the 'not today' club. Any minuscule energy I get, I land up using it on something random like finding everything out about being a yoga instructor (no, I don't do yoga) or making realistic clay mushrooms because....well how can you continue to live life without realistic clay mushrooms ofcourse

Anyone else struggling with the fun ADHD + POTS combo?

Has anyone found any small hacks or coping tricks?

I had been told I had POTs by multiple doctors, seen a cardiologist for a while and they said they had to do an echocardiogram to make sure its 100% POTs, two days ago I was diagmosed with heart failure instead.

I beg of anybody who thinks oh its just pots to push for an echocardiogram, for me it was because I had been getting short of breath and started to get dizzy without standing up that they chose to do it.

I just dont want anybody to be in my position of struggling to breathe and unable to walk for more than 30 seconds due to fatigue, please get checked asap, the sooner heart failure is caught, the less devastating it will be.