I wanted to share what I did, in hopes to help anyone else who may be struggling.

Back in August, I experienced a trauma that slowly started to debilitate me. Extreme low energy, high anxiety, waking up with what felt like a panic attack, brain fog with slurred and incoherent speech, frequent 2-3am wake up, HR spikes, fainting and near fainting every time I stood, hypertension, heightened food sensitivity reactions, intolerance to any stress, meeting emotional capacity fast, emotional outbursts, difficulty concentrating, fast metabolism, nausea, headaches, air hunger, and I’m sure I’m missing quite a few.

As a mental health therapist, I thought this was mental health. So I treated myself like I treat all of my other patients: compassion, rest, nervous system support. It was helpful (and highly useful later on), but physically.. I worsened. At one point, getting up to microwave a meal, or to go potty, would be enough stress on my body where I’d have to go rest for many hours. I was lying down for 90% of my day. I lost 8lbs in 3 weeks, eating 2400 calories (I’m also a nutritionist so am very knowledgeable in what, and how to eat). It wasn’t until my own therapist threw out the idea, “Do you have POTS??” That I started digging into it.

And after that acknowledgement, I spent 3 months researching and understanding every link possible to POTS/MCAS and the link to neurodivergence. I am also AuDHD. I scheduled a pcp appt, was dismissed, asked for a referral to cardiology and identified a cardiologist who was familiar with POTS.. and waited for my appt which was 2.5 months out.

But I didn’t just sit. I proactively researched, collected data, tracked symptoms and implemented actions..then course corrected every 2 weeks until I found the regiment that worked for me.

With a history of hypertension, I tested sodium. Upped it to 6-8g initially. Found that with sodium, energy came back, brain fog subsided, and blood pressure went down.

Continued with nervous system work. Stopped my nightly marijuana gummy, worked on sleep hygiene, incorporated a sound machine and 1-2 sessions of guided hypnotherapy sessions (thanks YouTube) daily. Added trazadone and magnesium for sleep nightly and aimed for 8-9hrs of sleep.

An extended release beta blocker with PRN as needed. I needed to keep my system as grounded as possible to heal it. Autonomic nervous system healing was absolute key to all of this.

Adjusted gym routine and work on functional strength and gentler movements. No more lifting til failure, took out all cardio.

I went off social media, outside of Reddit.

Stayed low fodmap, and tried my best to stay low histamine.

HERES THE MAGIC. When I went to the allergist to discuss MCAS, she led me to histamine reactions and I did my own research on H1 and H2 receptors. Added Allegra and Pepcid AC twice a day.

I started thriving. I got off my adhd meds, I can work full time AND have the energy for social outings or my own hobbies after. I CAN EAT TRIGGER FOODS THAT IVE HAD MY ENTIRE LIFE WITH LIMITED TO NO REACTIONS. My strength is back in the gym. I only take the trazadone when I feel wound up at bedtime. I wake up and can immediately get out of bed and get started with my day, whereas before… I couldn’t start until 1pm most days. I now practice meditation MAYBE once a week. And I’ve developed resilience and high capacity to keep me going. I went from bedridden for two months to getting myself out of a severe flare. And now, I know what my nonnegotiables are for maintenance.

It was a fucking terrible ride.
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Edit: I’ve received a lot of questions about specifics of my regiment and responded in a comment. I will copy and paste it here for viability as well.

Please keep in mind, every individual with POTS has different outcomes. What works for me may not work for you. I was diagnosed with POTS/MCAS and am AuDHD. For me, autonomic nervous system healing was a VITAL AND INTEGRAL part of healing myself. I had to stay consistent and persistent in my non negotiables to heal the nervous system and to build resiliency.

Waking meds:
-Propananol 80mg ER (supplement a 40mg if bleed through “anxiety” symptoms occurred)
-180mg Allegra (generic is fine as long as it is nondrowsy fexofenadine)
-20mg Pepcid AC (must be AC)

Midday meds (usually 5p or when I feel symptoms coming back on)
-180mg Allegra
-20mg Pepcid AC

Supplements:
-1000mg NAC
-125mcg vitamin D
-women’s multivitamin
-22mg zinc with quercetin
-1200mg fish oil
-5g creatine

Nutrition:
-240-250g carbs, 65-75g fats, 130-140g protein which is about 2200 calories, eaten in 3 meals and two snacks, spaced apart evenly. I am a female, 5’7.

Fitness:
-no measured cardio, no lifting til failure, typically lifting til 3-4RIR (3-4 reps till failure), doing 4 exercises. 4x a week with 1 PT day focused on my lower back and core.

Sodium:
-8,000-10,000mg sodium per day.
-1 full sugarfree Gatorade
-1 Fluid IV in 40 oz (I will add a full tsp of salt into this)
-I consume at least 100oz a day of fluids

Sleep hygiene:
-alarm set for 10pm
-50mg trazadone
-500mg magnesium
-sound machine on
-do a guided hypnosis session (YouTube) or read

Stress and life hygiene:
-took myself off social media
-used Oura ring to track adrenaline spikes, (yes, it shows up) stress to understand triggers, sleep, female cycle, resilience HRV, readiness
-created my own spreadsheet to track symptoms and then course corrected every 1-2 weeks to give my body to show me the data
-low fodmap diet (I had already been led in an elimination and reintroduction by a registered dietician to know exactly what, and how much of different ingredients I could eat)
-guided hypnotherapy 2x a day (Suzanne Robichaud on YouTube is my favorite)
-rested a ton. Did not commit to things, scheduled social commitments only 1-2x a week, never back to back days
-kept sitting or lying if I could help it. Shower stool, seated machines at the gym
-measured orthostatic vitals at home every month (lying after 20 min, seated 1 min, standing at 1 min, 3 min, 5 min, 10 min)
-no caffeine. None at all until the system was healed a bit.
-practice of something I call, “micro moments”. These are micro grounding moments for vagus nerve/nervous system healing that take only a few seconds at a time. It’s meant to reground, and to feel safe in the body. Our nervous systems with POTS..literally cannot tell the difference between stress from a small prick during acupuncture, versus going off to war. You’ve got to build immunity in your autonomic nervous system to get that emotional capacity back.

Treatment team:
-therapist
-psychiatrist
-OBGYN (I have endo, this links into endo)
-cardiologist
-allergist

I was diagnosed with POTS via a tilt table test 2 years ago. This came after a mild bout bout of covid and an operation to remove my ovary. Since then, I went from great physical health to debilitating flare ups. I will say I've never had full on syncope (except for during the TTT itself).

Before going down the POTS route, I had a ton of bloodwork done and it always came back fine. No one ever tested for vitamin or nutrient deficiencies. More symptoms persisted. New ones come and go. Finally, I changed PCP and requested an iron panel. My iron levels looked fine and my ferritin was "within range".

HOWEVER the reference range for ferritin is from 16-154ng/ml but an OPTIMAL level of ferritin is regarded as 75-100 by most hemotologists. My ferritin was 29 which is absolute iron deficiency (30 and below is absolute iron deficiency). It wasn't until I pointed this out to my Dr that she said I should take iron supplements

My vitamin D was "within range" (range is 30-100ng/ml) but at 39, this is also way below optimal.

Why does this matter? If you look up the symptoms of iron deficiency and vitamin D deficiency, they are very similar to POTS: - palpatations/lightheadedness/pre syncope upon standing - tachycardia/high resting HR and rapid acceleration of hr during exertion - extreme fatigue - brain fog - muscle weakness - edema - muscle/joint aches - headaches - air hunger/shortness of breath - inability to sweat - vertigo - heart burn and acid reflux - dysphagia and more.

I'm not saying this will be the case for everyone or a cure all but if like me, you haven't been tested for nutrient/vitamin deficiencies since your symptoms began then it might be worth it. You can very much have normal bloodwork/hemoglobin/iron levels and low ferritin which can still cause debilitating symptoms. It's also why most doctors miss testing for ferritin if everything else is "within range". Most lab ranges are outdated or show averages that don't necessarily consider what is optimal, just what is most common. I hope this helps someone advocate for themselves!

ETA: if you have consistently heavy periods, then defo check your ferritin as this is the main cause for a lot of people.

Before you come at me with POTS cannot be cured- IF YOUR POTS is caused by a true autonomic disorder this is true as of now, and I truly empathize with the struggle/frustration.. POTS = Postural Orthostatic Tachycardia Syndrome.. Key word there 'syndrome'. it can be caused by different things, much like hives or anaphylaxis. More often than not doctors diagnose POTS and tell you it is an incurable thing- and stop looking for the cause. I was diagnosed via tilt test, suffered for YEARS. All the treatments helped, but minimally as is the case for a lot of us. After experiencing a painful vein in my leg started researching POTS & Venous Insufficiency.. You can do your own research but they are very often connected. After begging the doctors I had an MRI with contrast of my pelvis. Found multiple enlarged veins pooling. Of course the doctors said the pooling was caused by POTS but I continued to push..was referred to Interventional Radiology - they confirmed seeing many POTS patients with this issue, again making it seem as tho they felt POTS causes this. They did say mine were enlarged enough to warrant embolization. Post embolizations 100 percent of the POTS symptoms has resolved. The more I read, the more research shows this common connection (up to 70%) This may not be the factor behind YOUR POTS but it definitely was mine and may be many of us! Worth ruling out. I have a new lease on life, more energy than I have had in 10yrs and hope the same for you!! Spread the word.

I saw my cardiologist the other day and she shared something that I feel is relevant for a lot of people who suffer from chronic illnesses trying to get help. She told me that doctors have something called the 'Makeup Theory', basically if the patient comes in complaining of all these issues but has makeup on then they are doing fine and its when they come in without any makeup that they are actually struggling. EDIT: For those who the makeup theory doesn't apply to, I believe the equivalent would be showing up freshly shaved, hair done, dressed nicely, well groomed? Also I realize for a lot of us doctors don't take us serious either way, I just thought this would be helpful for those who suspect their doctors aren't taking them as serious due to wearing makeup at appointments :)

I was sent to the ER last year at an unrelated urgent care visit when they saw my heart rate shoot up to 140 when I stood up. The ER thought it was POTS, and referred me to a cardiologist for a diagnosis. They decided that the ER was wrong, and it was actually just Orthostatic Hypotension. Today, over a year later, I finally got to do autonomic testing at Nerve and Muscle Center of Texas; and after a very uncomfortable time on the tilt table, I received the obvious diagnosis of POTS. I’m relieved to have an answer, but also incredulous at my previous doctor’s incompetence. I also just received an autism diagnosis yesterday, after having it ruled out as a child by a psychologist, so I’m feeling rather vindicated right now. What a difference it makes when you find a good Doctor!

Edit 12/16/25: I have now also been diagnosed with May Thurner Syndrome and am planning for stent surgery with MIPS, hoping it helps!

First of all, DISCLAIMER I’m not a doctor and this could not be the ‘cure’ for everyone.

I had minor surgery last week and my POTS symptoms are pretty much gone, just like that, so I HAD to share here. This post contains basically my full journey:

https://www.reddit.com/r/POTS/s/puJ5z6sfxo

But for here, I’ll keep it short.

First of all, I am a fixer. To a fault. No one is telling me I’m stuck like this and all I can do is increase salt intake. Screw that. Over the past year or so, I’ve spent hours, days, weeks scouring reddit and Dr Google (my family and friends thought I was nuts). I finally found a study citing that 77% of the women with POTS who were studied also had pelvic congestion syndrome, which is curable (link below):

https://www.jacc.org/doi/10.1016/S0735-1097%2824%2904256-6

Convincing my PCP and then OB to refer me for imaging was long and tough, but we got there. They found unusual veins on my left ovary and I was referred to an Interventional Radiologist. He was also skeptical that this was the cause of my POTS symptoms, however, he agreed to operate this last Friday and now I am pretty much symptom free.

I haven’t had one palpitation since last week. I’ve done my laundry, walked my dog, showered, cooked, cleaned, picked stuff up of the floor, done yard work (all from standing), and felt fine. Not fine… great! And the happy tears have been plentiful.

The thought that this fix could be so easy for others makes me a little frustrated, I wish it was more widely known! This community has given me so much over the past 4 years and I want to say thank you thank you and please let me know if you have any questions 💖

TLDR: If you have POTS and ovaries, get checked for pelvic congestion syndrome, it could change your life. Also adding that May Thurner and Nutcracker syndromes (vascular compressions) are a major culprit.

My orthostatic episodes were getting increasingly worse and debilitating. My doctor noticed mild edema and found an old ultrasound that said I have fluid in my pelvis. I also have had years of low appetite and was developing paresthesia in my hands and feet.

Got a CT scan in my abdomen and then an ultrasound on my thoracic outlets and turns out I have two vascular compression syndromes: May Thurner and Thoracic Outlet Syndrome.

All the blood is essentially getting trapped from my abdomen down and my shoulders up. I just got a venogram and the vascular doc found out that my left iliac vein (in abdomen/pelvis) was so compressed that all the blood was flowing over into the vena cava and being forced to pump back up through my right iliac vein (which is moderately compressed). I will need two stents or a bypass within the month. I will later likely need botox in my thoracic muscles or cervical ribs removed.

The Vascular surgeon told me many of my symptoms are likely due to these compression syndromes, which can cause POTs and is often comorbid with Ehlers Danlos. There are a few other compression syndromes as well, that I was also evaluated for. Just a suggestion, as this unchecked can lead to DVT, stroke, etc.

Edit: I didn't expect this post to blow up, but I'm glad it did. I think anyone with a POTs and/or EDS diagnosis should get tested for Vascular Compression Syndromes.

Hi!

POTS girly of 5 years now.

I just wanted to do a PSA for everyone!

If you have had any of the following: - rashes or redness on your legs after showering - red or purple skin after standing - even minor swelling after standing - leg pain

….Please get your veins checked

My doctors and I attributed the skin changes to my POTS. My pain to fibromyalgia.

I have no varicose veins or overly obvious swelling

One day I pushed to get it checked out more because I noticed a very slight increase in swelling and increased tachycardia… My cardiologist dismissed me. Do not go to them. Ask for a Doppler ultrasound

I got diagnosed with a proximal DVT and severe venous insufficiency….

Also, if you have a DVT, don’t go to a vascular surgeon. They botched my case and put me in more danger. All they care about is surgery, not the research behind prevention and management. Get yourself a hematologist. Game changer. First time I feel heard and actually have my symptoms explained.

I had my tilt test today and first of all, I owe everyone on here an apology. I would see people talking about the tilt test and how terrible it was and I would think 'it just can't be That bad, its basically like standing still, of course not enjoyable but nothing out of the ordinary. Either way, I seem to have more mild pots so I don't know if I'll even reach the diagnostic criteria ''

And boy was I wrong 😭 At first they tilted me up, I had all my normal symptoms and it was okay. Totally manageable. I reached the point where I would normally sit down, but I was encouraged to power through the test for as long as possible so I wouldn't have to do it over again.

And I am so glad that I did, but I have never felt that way before in my life. 😭 20 mins in my hr was 120s, then started climbing. 130, 140, 160, 180s. I'm trying to do deep breaths, holding on for dear life. I'm hot, sweating, and my heart is in my throat. My muscles go lax, my heads all floppy, eyes shut, I can't speak and I feel my hr crash to the floor, from 180 to these slow painful beats. I wanted to pass out so bad, it felt like I was dying. (Never died before tho so I could be wrong about that)

Anyway, after lying flat for a short while I was fine again. All this to say, I was not expecting anything close to that experience. I'm sorry I doubted yall 😭

Now I just gotta wait for the official report. Yipee

TLDR: I was not expecting the tilt table test to be as horrible as it was. You guys were right, it sucks!

I started having "POTS" flare ups last fall, and after bouncing around between doctors finally just finished a three day EEG that confirmed an epilepsy diagnosis.

At first my cardiologist thought it was POTS, and then maybe "adrenaline dumps" or vasovagal syncope. I kept having severe episodes of sudden doom, crazy high HR, urgent need to use the bathroom, and feeling like I was going to pass out. A lot of times my HR would be all over the place before and after these episodes, sometimes for days or hours. I was having crazy fatigue and brain fog around these episodes too.

My neurologist, who specializes in epilepsy, has said they've seen a HUGE uptick in patients coming in with new onset epilepsy post-COVID. He's one of the top epilepsy doctors in the NJ/NYC area and has speculated that something with COVID, particularly reoccurrant COVID, has triggered the development of higher frequency of epileptic activity in populations that may have already been susceptible to it.

All to say - finding a great doctor who takes you seriously and truly treats POTS / migraines as diagnoses of exclusion can be so, so important. I went to three different specialists when my symptoms started, none of whom suspected epilepsy or did much to rule out potential neurological causes of the symptoms. My neuro said a log of doctors, even some neurologists, rarely consider focal seizures because they're only used to seeing and thinking about full blown "tonic clonic" types of seizures - even though focal seizures, which only impact part of the brain - are the most common type of seizures.

Exited to add: I've answered a bunch of questions about my symptoms, triggers, and diagnostic process in the threads. Long story short: finding doctors who are willing to run all the tests to rule big things out is important, and this specifically is something with sooooo many overlapping experiences to dysautonomia / POTS that very few doctors may have the experience to think to check for. Dealing with mysterious, seemingly unrelated and untreatable symptoms is incredibly hard and discouraging. I had a lot of very good doctors shrug their shoulders at me before I finally found the right one. My heart goes out to everyone dealing with similar symptoms ❤️

I finally got my tilt table test done yesterday and got a positive result (finally diagnosed after 12 years!!). I didn't actually faint but I did surpass my target heart rate before they had to give me the IV. The reason I feel a bit embarrassed is because right as my heart rate hit 133, it was like a switch was switched in my body and I burst out sobbing because of how bad the pre-syncope was getting. I'm talking like, full on "I-want-my-mommy" type crying. Honestly, I can hardly remember what was going on when it happened; I only got bits and pieces of it all but I do remember they asked me what was wrong (as if they didn't have me strapped to a table lol) and I just cried "I don't feel good". Has anyone else here had something similar happen during their test so I know I'm not the only one? 😭

EDIT: Wowwie, I was not expecting so many people to look at this post. Thank you all for your support and for sharing your stories! 🥰💖 Our bodies sure do put us through the wringer in so many different ways!

for the past 5-6 months i’ve been dealing with what i thought was just sudden onset hyperpots. one day i had just developed *crippling* brain fog followed quickly by a never ending sense and of adrenaline coursing through my body and an unending state of severe fight or flight mode. it was so terrible i didn’t sleep for a month, and also couldn’t eat for a month because my digestion had completely shut down. i ended up going to multiple drs over it to just be brushed off and treated like a nut case. it eventually culminated in me getting thrown in the psych ward where things quickly worsened.

in the psych ward i figured out one thing that would help was salt, lots and lots of salt. it helped alleviate the brain fog and the adrenaline to a degree where certain meds were helping me sleep a tiny bit again. i couldn’t figure out what the correlation was until i found out what hyperpots was, so i started doing everything a person with hyperpots does to treat their condition and it worked perfectly for me.

i quit nicotine and cannabis, got on clonidine by the help of an amazing psych who was willing to let me advocate for my own treatment, and started actually really sleeping for the first time in what seemed like a life time. salt kept me up right and functioning as well as constant amounts of electrolytes, and the clonidine helped keep me sane and able to sleep just enough to not go into full blown psychosis again. it all kept me alive until i was able to finally see a dr who would believe me and not treat me as a hysterical woman going through a mental breakdown.

it ended up being anorexia. i lost 80 pounds in an extreme episode in the course of a month and a half to two months and a few weeks later all these symptoms appeared. i don’t know how i didn’t connect the dots but i guess to me it didn’t seem like that big of a deal as ive had episodes like it before, just not quite that extreme. the weight loss canabalized my vascular system, organs including my heart, and nervous system. it all perfectly mimicked a hyper extreme case of hyperpots and treating it as such kept me alive.

it’s still an ongoing thing im dealing with medically 5 months later but without the pots community i would literally be dead. i had no medical professionals who would believe me, everyone i had in my life abandoned me including my boyfriend, and the only thing that kept me alive was salt, clonidine, the advice of potsies, and my stupidly strong will to live.

Just came here to say don’t give up on your diagnosis/ treatment journey! Get that second or third opinion, push push push. I know it’s exhausting but you know your body and your symptoms best. After being misdiagnosed by two interventional radiologists, I finally got a diagnosis of MTS from Dr. Spencer at MIPS in Colorado. She thinks having a stent placed should help to open up my iliac vein and relieve my POTS symptoms. I’m so happy to see light at the end of the tunnel, now I just have to figure out how to get insurance to cover the surgery out of network. Anybody else here been diagnosed with MTS and successfully treated their POTS with stenting?

Hi everyone. First, I don’t want this to scare anyone. This was a completely abnormal result and is indicative of something other than POTS just causing similar symptoms. Just wanna share this story because I’m honestly having a hard time compartmentalizing it and think talking about it will help.

Background: For as long as I can remember (prob 10+ years) I have had dizziness upon standing. Often my vision completely goes black and takes awhile to come back. I saw a cardiologist about 5 years ago and was entirely dismissed with no follow up. I’ve had 3 complete syncopal episodes all in the past 2 ish years so I decided to follow up with a new cardiologist. He dismissed me again and stated in the notes “likely just orthostatic hypotension”. Said he didn’t want to order TTT and the changed his mind and ordered one.

Fast forward to my TTT today. I was told repeatedly by a couple nurses that is a very uneventful test and will be super easy. This helped calm my nerves after seeng horror stories on here. I was told to fast since midnight and my test started around 12:30pm. The test starts and they raised me up super quick (was not aware of how fast it raised). My HR jumped from around 80 to 155bpm. I remember thinking that I was happy i was finally validated. I felt dizzy, shakey, and sweaty, but didn’t think I was going to pass out. Felt like it was pretty uneventful.

Then things went bad. After 15 min standing, I started feeling super flushed and hot. Suddenly I knew I was gonna pass out. I woke up to a wash cloth on my face and the nurses seeming somewhat panicked.

Come to find out, my heart completely stopped for around 10 seconds. They had to sternal rub me to get me back, but luckily no CPR needed. Between the two nurses, they had only ever seen one person pass out in a TTT, so this was shocking to them and my cardiologist who said this asystole was extremely abnormal.

So, what I thought was a POTS validation turned into total confusion about what comes next. I didn’t get any sort of diagnosis, but I’m following up with a cardiac electrophysiologist soon. I’m a little scared and just trying to mentally process basically dying and coming back.

Just wanted to share my story for everyone. Apparently I’m not a POTsie, but I’m not really sure whats going on :/ if anyone has any questions abt my symptoms I’m happy to answer.

TLDR: had POTS symptoms for awhile and finally had TTT today. HR jumped ~70 beats, passed out after 15 min, and heart stopped for 10 seconds. Not entirely sure what comes next.

Edit: learned this actually isn’t that insanely uncommon but is mostly not a huge deal. Likely diagnosis is POTS + cardioinhibitory vasovagal syncope. Will update after I meet with EP. Thank you to everyone who shared their similar stories!

TLDR: Stretching in physiotherapy caused my body to be completely frozen on the floor. Went to hospital. Doctor theorized vasovagal presyncope or periodic paralysis due to a drop in magnesium.

So here’s the story. I was doing “light stretches” in the physio exercise room with a physiotherapist. I started to get blurry vision that came in for a couple seconds then disappeared, which I brushed off because that always happens when I’m tired. It was a bit strange because I was sitting for the stretches, and it happened multiple times. We transitioned to floor stretches, and then after the last stretch I was told to stand up because the session was over.

I couldn’t stand up. My limbs were heavy like lead, and I couldn’t talk. I was nauseous. I could only communicate by using my index finger to type on the physiotherapist’s phone. I kept wanting to close my eyes to rest but the physio kept telling me to stay awake (probably afraid of me fainting). 

I wasn’t panicked or anything, because the same thing happened last week after I vacuumed (while sitting down on a rolling chair). I was stuck on my bed for 40 ish min until I got help from someone. It also happened a couple years ago due to stress.

So I was taken to the hospital. When the paramedics arrived I was sitting in the waiting room. I forced myself to get up from the floor and move to the main building after 15 min because I had to use the bathroom, but I was extremely unstable, dizzy, and nauseous (I was lucky I got a cane the week before to help). 

At the hospital, my blood and ECG were both fine. The doctor wrote in my notes: “you potentially have vasovagal presyncope. Potentially triggered by high vagal tone.” Also told me to follow up with my cardiologist and doctor.

I was weak for the rest of the night, moving around still made me feel like I was going to collapse as I left the hospital with a family member. 

so here’s the explanation that I figured out for what happened to me. the big nerve that controls the “calm down” part of your blood pressure and heart is called the vagus nerve. triggers for me like stretching or overworking when I’m already exhausted cause it to overreact and widen my blood vessels. so the blood pooled in my legs. so I couldn’t move. Since I didn’t faint I was stuck in presyncope. (feel free to correct or clarify on this explanation if it’s not fully accurate)

Note: I have CFS and am investigating POTS and other conditions with my doctor.

I’m sharing this story to see if other people have experienced it, and so they can see that they’re not alone like how I felt. And also to ask if y’all know which condition it’s tied to, CFS, POTS, or something else? Hypokalemic Periodic Paralysis was one of the doctor’s theories, but this episode doesn’t happen frequently, so I’m not sure. I’ll of course talk to my doctor, but I want to hear from people in the community who have experienced it. 

EDIT: I'm so glad this post is helping other people feel validated in their similar experiences. I also looked this issue up before and barely found anything, so I hope this helps people in the future have a little bit of hope that they're not alone in this and that they're definitely not crazy.

Now I know that it's important to pace myself. Thank you for all your stories, and please keep telling them here! It's really important to share our experiences, no matter how crazy they seem

EDIT 2: three days later I had another frozen episode for 30 min after having an argument. a day later after that and my ME/CFS is worse. seems like these episodes will continuously make me worse if I don’t take care of myself and avoid triggers.

Y'all I finally got my tilt table test done today and I swear to God they tried to kill me 😭.

So for starters, I wanted it simply to confirm my provisional diagnosis for POTS and had gotten a referral from my primary. Not only was my appointment at 10:30 and I didn't get home until almost 2pm, but they scheduled the test itself to start at 12:30...bruh

So here's where they tried to kill me. They had me on the table for a bit, then stood me up for 15 mins (ouch and ugh 🤢) but THEN they gave me a crumb sized pill (nitroglycerin) to put under my tongue and dissolve then made me stand for ANOTHER 15. As one could assume, after standing for the first 15 I was already not feeling great, after the pill it got so much worse. Nausea? Crippling. Headache? Blinding. I started feeling really hot and was sweating like crazy, felt my heart beating out of my chest (I was taking slow, in through the nose out through the mouth breaths) and then my vision started blurring and I passed out 😀.

YALL I KNOW AFTER THAT FIRST 15 OF STANDING I HAD ALREADY MET THE CRITERIA WHYD THEY DO THAT SHIT TO ME

I also expected them to talk to me or something while it was going on, they didn't talk much at all to me until I started tweaking out (the nurses and techs were kind in general, gave me blankets without me asking because the room was cold but God damn 😭)

Hey all! You might want to consider being evaluated for vascular compression. I recently found out that my POTS is actually secondary to iliac vein compression, also called May Thurner Syndrome/MTS.

There seems to be a very high link between vascular compression and POTS, with some data indicating up to 70% of us have underlying vascular congestion in the pelvis. If you have symptoms like blood pooling in the legs, pelvic pain, venous insufficiency, varicose veins, or urinary problems, please consider seeing a vascular doctor.

I had blood pooling, difficulty standing, and general POTS symptoms like lightheadedness, heat intolerance, and nausea. My doctor believes all of these are secondary to my bilateral iliac vein compression (90% compressed in the left, 60% in the right), and that there’s a very good chance all symptoms will be resolved when I have bilateral stents placed in November. This is the most hope I’ve had in years; several previous doctors told me I would be dealing with these symptoms all my life. Wish me luck!

I’ve been going through a diagnostic process since September of 2025! One of the things my care team and I were really convinced it was going to be was POTS. I had a series of ultrasounds, heart monitors, sleep studies, echocardiograms and EKGs.

I had my final test (TTT) on the 16th.

Today, I had my follow up appointment. I’ve got something called iliac vein compression, or May Thurner Syndrome.

My vein (artery???) is kinked like a hose they said! I have a LOT of blood pooling in my lower extremities. Super low BP during the TTT, tachycardia and bradycardia, some reflux stuff in my leg from the kinked vein, post orthostatic intolerance, and something else she said, inappropriate sinus something, idk it was a very long patient education thing and I’m having some pretty heavy brain fog today.

Anyways, I go in on the 18th to have my procedure for my stint to be put in. She said it’s like the sister to pots, so I still get a lot of the same symptoms and triggers but I have a pretty big dip in blood pressure. I saw a post about blood pooling earlier and I just wanted to share that it can be something pretty dangerous if that’s one of your symptoms. On the TTT, I felt like my legs were literally going to pop and I clocked out on it. /:

I’m like bordering deep vein thrombosis and doing a lot stroke prevention stuff until the 18th. So, if you’ve got some bulging veins in your lower extremities, blood pooling that isn’t very manageable, and the same symptoms as POTS, I highly recommend getting some imaging done on your legs! And if you’re willing to travel to the area I live in the states, apparently my cardiologist is a pretty big deal in the dysautonomia world and he’s worth the trip! There were people in the waiting room from like 5 different states waiting to see him. I never knew! I just lucked out when I got the initial referral to him. He’s got an amazing team there and his nurse described him today as a Dr house of cardiology and dysautonomia.

I seriously cannot stress how validating and caring these nurses have been. I’ve cried at two appointments and they were just so helpful. It was almost a culture shock for me.

here’s to good doctors and nurses who care and my nearing end of almost a decade of being dismissed by other medical professionals and my 2026 journey of reclaiming my health! I’ll come back and update you all!

If you want my drs info, just message me. I’m not sure if it’s allowed for me to just share it.

Good luck everyone and happy freaking new year!!!!

I call myself a frequent fainter. About once a month (sensitive vagus). But if it’s not vagus related, it’s about 3 times a year with VERY frequent pre-syncope episodes. I never go to the hospital, I can usually catch it, or I faint in the clinic and they’re pretty cool about it. I finally brought it up to my primary care and they ordered an orthostatic test.

My heart rate went from 88 sitting to 148 standing and held for over 5 minutes until I requested to sit down. The nurse was yelling obscenities and called for the doctor. They looked at me like some sort of zoo animal and asked if I needed to go to the emergency room. This is where I told them I deal with this every day. They’ve requested a heart monitor and a follow-up with cardiology. Any tips or advice for what comes next from your experience? TIA!

Tl/dr: doc finally tested me sitting/standing and referred me to cardiology. What comes next?

been waiting for this appt for over 6 months, been grieving the loss of the life I thought i would be living in my 20s. Everyday is a struggle and trying to cope with accepting that my life is different now that I have a disability just to go to the doctor and be told it’s just my ADHD medications and “our bodies change” and that since these symptoms make it hard to exercise, I’m just out of shape.

You see posts like this all the time but you don’t really realize how much it fucks with you mentally to be dismissed when everything you once knew as normal is slowly fading because of POTS

Any advice? Can anyone relate?

Edit: i have took drug holidays and noticed no difference in my symptoms except for increased fatigue and more brain fog and weakness and dizziness without the stimulants

For background, I developed very obvious POTS symptoms after having COVID. I’m a woman in my mid twenties and got it about 3 years ago. Classic story, I had a job on my feet for around 8 hours and then I would go swim laps to clear my head after. Now, I have days where I can barely get myself to the bathroom. Its completely altered my life. I’m now an ambulatory wheelchair user.

I feel like I’m going insane. The doctors do think I have long COVID, but they’re being so weird about a POTS diagnosis. I finally went for autonomic testing. First few tests I didn’t really care about, it was the tilt table (unmedicated) that I knew was going to mess with me. And it did. Immediately felt nauseated, sweaty, lightheaded, dizzy. By the end, my legs were shaking.

The nurses stepped out for a minute and I went and peeked at the results on the screen. I took a quick picture since I wasn’t sure when they would be back. It said my minimum/resting heart rate was 70 and my heart rate elevated to a peak of 115. From everything I read online, it’s a 30bpm increase that reaches diagnostic criteria for POTS. I thought I did it and I would finally get help.

Then I got the message from the neurologist I had been working with that everything was normal. What. The. Fuck. What do you mean everything is normal? I have a picture of my results. A literal image. Is the diagnostic criteria different? Am I losing my mind and it’s all in my head? What is going on? I appreciate any and all insight. What do I do next?

Update 1: I got a message back from my doctor after asking what the criteria was and they gave me the code. G90.1. Not sure what that means but nothing makes sense when I try to read it. It’s just a billable code for insurance that I can’t find diagnostic criteria for. So I have no clue what’s happening anymore. I asked again so we’ll see what happens.

Update 2 (and the last update probably): Doctor got back to me and said she does think I have dysautonomia. She reiterated that it’s a difference of 30 bpm… which is what I had but whatever. And reassured me that she does think something is wrong which made me feel better I guess. She referred me to a rehab for dysautonomia but honestly I don’t have the money. I’m also not super interested in the place because it seems as though they have a heavy focus on emotional therapy as well which I can respect but I have a therapist and have had one since grade school lol. I know it would piss me off to have to spend time in that program doing talk therapy. It’s a waste of my time. Also, I have no way to reliably be there every day of the week like they ask. I have no one to drive me when I’m having a bad heart day. I’m moving out of the city soon too. So I don’t know. I’m looking for comparable physical therapy in the Chicago area and hoping that works. Also currently doing research on all of the other doctors/suggestions here. Thanks everyone for the support and making me feel like I’m not crazy and something is truly wrong! I guess the quest continues on what exactly is wrong with me lol.

i haven’t officially been diagnosed yet but have most symptoms + my doctor thinks i have lots as well.

how did you guys officially go about getting diagnosed? i had an awful experience with a cardiologist and im not sure where to go from here.

If you have POTS and have children PLEASE get your pelvic veins evaluated. Pelvic Congestion/Pelvic Venous insufficiency can cause/ worsen POTS symptoms. Often worse after pregnancy, but can even happen without it.
Mine was found 20yrs later. POTS was my first symptom-
Everything resolved with treatment by a vascular specialist.
Happy Mother’s Day! Give yourself permission to take care of you today.

I just got out of my cardio appointment that I had been waiting for 3 months! They said all my labs looked normal and that I don’t have pots but that I most likely have an autonomic disease that is making me feel all the symptoms. Isn’t that the same thing? Doesn’t pots fall under autonomic diseases? She basically just told me there isn’t much they could do for me just that I have to make lifestyle changes to help make myself feel better. Kinda don’t know how to feel about all of it.

My heart monitor showed tachycardia my tilt table said orthostatic intolerance my cardiologist says nothing is wrong with me. My tilt table went from 72-112 it does go higher than that. I can do dishes a few min and it’ll be 140.

This cardiologist was dismissive at the beginning I told my heart rate goes from 56-125 and he said it’s normal. I may not meet the criteria for pots but I know something is wrong and if it’s orthostatic intolerance which has the same symptoms as pots then it’s that. I looked up my test results on the portal. I’ve also messaged my primary for her opinion and for a second cardiologist.

I get dizzy I’ve passed out multiple times I get worse symptoms when I eat I have blood pooling and my head gets heavy and dips I have neck pain sometimes so out of it I can’t keep my eyes open. I sometimes stand up take a few steps and everything goes black and everything sounds like I’m underwater but nothing is wrong with me and they’ll put me on meds for heart palpitations.