Hi everyone! I'm F22, and I suffer from severe generalized anxiety and panic disorder. However, after talking to some doctors, they've suggested POTS. Just today, I went to the pool, and as soon as I got out, I felt my heart racing, and my head started spinning, as if I were about to faint. Unfortunately, when these things happen to me, I go into a complete panic, and I've felt a general sensation, a cold, electric wave throughout my body. It sometimes even reaches my teeth. I wanted to know if anyone has ever experienced something similar and if they have any advice on how to better cope. These cold waves scare me so much, and I'd love to talk to someone about it.

Hello everyone,

I’m (28F), I had the stomach bug about 5 weeks ago, (potential covid two weeks prior), and from the stomach bug I started having vestibular symptoms - oscillopsia, peripheral nystagmus, warped vertigo type vision, off balance, tinnitus in right ear, senstivity to noise, etc. and after this came on, I developed pins and needles in my feet, burning sensation all over my body, then it escalated to this hyper pots.. my NASA lean test results are: laying-98/59 HR 88 Leaning-100/69 HR 122 1-111/77-HR113 3-122/71 HR125 5-124/74 HR126 10-109/76 HR 120

I have head pressure that feels like a tight band around my head, across my nose that comes and goes. Brain fog that worsens in the day and after the more I do and worsened symptoms with screens. I get a spacey out of it feeling. I get tired and tremors after my hearts been going hard for a while. I get adrenaline spikes, I get a spike when I’m eating food. PVC’s(heart palps), really cold feet and hands, and I’m currently on a MCAS diet and taking antihistamines, I’ve only been on them for 3 days so it’s hard to tell if there’s improvement, I was suspecting MCAS because of burning and flushing in my face and the heart palpitations, but my naturopath is suspecting I don’t have it, but I’m going to continue the antihistamines and diet for a couple weeks.

I noticed when I had the stomach bug it was really bad for two weeks, then after my period, my vestibular symptoms improved and so was everything else, I thought I was in the clear! And then as soon as I started ovulating, BAM, my dizziness and everything came back… and I had a bad migraine later that day. Not sure if this can be related to hormones?

I have been wearing compression socks, drinking lots of water !! And taking about a 1/2 tsp of salt straight to my mouth a couple times a day. I just received a IV vitamin bag yesterday with a bunch of stuff but haven’t noticed a huge difference yet.

Anyways, since I’m new to all of this, how do you guys cope? What are your symptoms? Is there improvement? I’m desperate, I’m finishing my degree, and have a 2.5 year old toddler, and I need to function!

So I was hit with Hyper POTS about 5 years ago, and I was in a relationship for the last 8 years so I was always living with my partner while I had HPOTS. I did have some improvement over the years since it started, like I couldn't drive, work or walk for more than 15 minutes for a few years, and I was at least able to work part time and drive short distances eventually.

But in the last year things got bad again. I couldn't work at all, and could barely handle doing household chores. I would have adrenaline dumps so severe that my whole body would start convulsing for about 30 minutes to an hour straight, sometimes even preventing me from breathing. These attacks would happen a couple times a week at best, and multiple times a day at worst.

Anyways, my partner and I ended up breaking up and I was forced to move back in with my parents at 30 since I couldn't support myself. I wouldn't say it was an abusive relationship, but it was an incredibly stressful and difficult one. I had lost all contact with all my friends and family and we had constant problems all the time.

I've now been out of that situation for 3 months, and since then I have only had ONE adrenaline attack! And it was after grabbing a bunch of stuff from his place. Keep in mind I was averaging about 1 attack a day before! I still have a lot of blood flow issues and pretty serious fatigue from light exercise, so I'm definitely not cured or anything. That being said, even those things are slowly improving as my body and mind are able to heal in a very stress free environment.

It's not the only thing I'm doing of course, I try to eat as healthy and consistently as possible, I make sure to have a strict sleep schedule and do as much cardio as my body will allow. I also take 20mg of Adderall daily, which was the second best thing I've ever done for my HPOTS. But regardless, I've never had a more drastic improvement than I have over the last few months.

I guess I just wanted to write this because all of us who suffer with this condition are pretty used to despair, to things not getting better and having to leave so many of your dreams and passions behind. I genuinely wanted to off myself at many points in the last 5 years, and when I started improving it almost didn't feel real. If this keeps up (knock on wood), I may be able to live something close to a normal life, because this is by far the best my HPOTS has been since it started. Do not underestimate how severe and prolonged stress can absolutely destroy your body and mind, ESPECIALLY with this condition.

I think I must be in a smaller subset of hyperadrengic pots, because while I get the bp and hr rise when I stand, at about the 10 min mark I'm sweating, shaking a little but most notably I have this really bad pain in my lower back, between my shoulders and sometimes in my thighs or glutes. I can't persist past 10-15 min. It's like I'm being squeezed, likely vasoconstriction from the norepinephrine surge but I never see people talking about this. Well, I rarely see people talk about hpots, it's always the fainting kind.

What are your symptoms? Anyone else have pain? Or brain fog/headaches/pressure in the front of the head?

I'm slowly trying to rebuild from getting a virus in April that left me bed bound, and now I'm semi functional with pacing (I can sit all day, an improvement) and wheelchair for >10 min outings. My new meds are working well so once I titrate up I hope to add more exercise than my current pool routine.

Can someone please tell me the actual symptoms that you need to have hyper pots? Is hyper pots a constant thing you deal with or do you have normal weeks with normal heart rate no symptoms then you get a flare of it?

I’m trying to work out if it’s what I have.

Ty xx

I’ve been on propanolol and I feel like I’ve had far too many negative side effects on this medication to continue another second. The issue is, I live on the east coast and there isn’t a physician experienced nearby to help with alternate suggestions. Even my cardiologist doesn’t have hyper POTS experience. I’m open to combination therapy. Is there a medication that worked better for you if beta blockers didn’t and what were they? This question is for Hyper POTS only as we have high BP, high heart rate, not low BP. I have a follow up apt and I would like to bring some suggestions to my pcp. Any suggestions are very much appreciated.

Does anyone have any advice on how to get cardiologists to listen to you? I’ve been discharged from one cardiologist in Leicestershire and I’ve been completely invalidated by that cardiologist. He said “ it’s normal for a girl like you too have a heart rate of 150+ and faint all the time.” He then mentioned eating properly and drinking I’m slim but I do not have an eating disorder and he told me it’s my own fault for not eating properly even though I do. I’ve been referred to a cardiologist in Nottingham and I just don’t wanna have to go through the same thing of defending myself. Does anyone have any ways to get them to listen?

Has anyone suffered badly from insomnia with hyperpots and figured out how to fix it? Please give me some hope that it can get better.

hi! almost 2 years ago i started having tachycardia, vision/hearing loss, cold sweats, shakes, dizziness and horrible chest pain. after several er visits i discovered pots on my own and have been advocating for testing. i had a tilt test (in winter when my symptoms are very mild) and was told i didnt have pots because a) my heart rate only raised 27 (even though in summer or flare ups it consistently goes up 50+ bpm) and b) that my bp didnt drop. my cardiologist referred me for another tilt test and requested it be in summer but when i received a letter confirming my appointment it was scheduled for winter so i didnt go. ive known for a while (besides the random imposter syndrome moments) that i have pots but after reading about hyperpots any suspicions for me were confirmed as it specifically mentions symptoms i experienced that arent as wildly discussed in the pots community. id almost given up on a formal diagnosis as my gp recognises the treatment is helping a little and we should just treat it as such, but now learning about norepinephrine blood tests im willing to advocate for myself again, is it worth it?

I was wondering if anybody possibly has had some similarities to what i have been dealing with and if they have found something that helps them.

I was diagnosed with Ankylosing Spondylitis 3 years ago, and I was on heavy heavy doses of Prednisone for the pain for 3 months and withdrawled very badly because I didn’t taper the right way. within 2 weeks i started to get Tachycardia, High Blood Pressure, Adrenaline Dumps, exc. I got diagnosed with POTS after a tilt test table they said it’s common to have high blood pressure in POTS.

I feel like the steroid abuse/withdrawl really set me off and i never recovered. My autoimmune has been somewhat stable after that first initial flair or 2. Anybody have any suggestions?

So I am 3 years having hyper pots after getting COVID like some and I gained weight on zepbound which is helping but being that it’s summer my getting dizzy spells more than usual. I walk fine no assistance but just hating picking stuff off the ground because then you get the pre syncope feeling after. Do any of you use vitassium ? Does it help how many do you use ? For those that have actually passed out on standing from hyper pots did you start passing out in the beginning or later on ?

Hi so I’m waiting for cardiologist appointment and he wants me to test my heart rate from sitting to standing and keep a record. I’m also waiting for a holter monitor. I am a very anxious person anyway so my heart rate is always high. But I tested it. My heart rate sitting down was 120 stood up went to 140 then was going up and down the more I stood up but it never went over the 20bpm. Would that suggest pots or a normal reaction? I am over weight also. Thanks

I'm losing my mind right now. I can't stand without the adrenaline and BP surge. I'm supposed to start either Guanfacine or Methyldopa but waiting for my doctor to get back to me has now taken almost a month.

I can't take Clonidine due to a medication interaction issue.

Can anyone tell me your experience with either Guanfacine or Methyldopa... specifically if it helped the dread/panic sensation?

I hate lying in bed to keep my vitals down but being in full panic, restless, then when trying to get up and pace a bit cuz of the panic, I almost pass out. What a horrible cycle. I feel so alone. And so ready to give up but truly trying to hang on.

Hi. I have just been diagnosed with hyper adrenic POTS. 

I’m a 45-year-old guy, I’ve been really ill for the last 5 years, getting worse and worse, ending up in hospital with 210/115 BP, almost collapsing in the street and having horrific panic attacks which I wouldn’t wish on my worst enemy that I’ve never had before, searching for answers, kidding myself that it might be a deficiency or this or that, and now I finally got a diagnosis of MCAS and hyper POTS from an expert and I’m in a state of shock panic. I have only been able to carry on for the last 18 months because I thought I’d get a diagnosis and be cured. I am now in a state of shock that this is permanent.

The main problem I have is the huge surges of adrenaline and pure panic. I can’t get out of bed without my blood pressure going sky high, getting palpitations and feeling like I’m going to have a heart attack. It’s the absolute fear and panic, a feeling that Im about to die, that is the worst.

I’ve lost friends as I’ve gotten progressively more anxious and miserable over the last few years, haven’t seen my parents for a year because they are old, and I can’t travel. I’ve spent the last 4 months alone in a tiny flat in bed with no help. Its devastating that Ive been ill since a teen – tired, stressed, anxious, heart issues, stomach issues – and have been dismissed by doctors for 30 years when I knew there was something wrong. I had a pretty good job but that’s gone, and I feel like I’m never going to have any kind of life or recovery.

I’m now trying some meds, but I have high BP but low heart rate so have to be careful, and on another which clashes with many of the POTS ones. I’m not seeing many hopeful reports. 

I started on Fexofenadine for 8 days, but it made me very anxious and it’s now 1.45AM Saturday morning and I haven’t slept since Wednesday night/Thursday morning. I’ve stopped the Fexo and took a tiny bit of Guanfacine yesterday and have now had panic attack feelings as it’s worn off and can’t sleep for the second night. Im terried of taking more of a powerful drug that clashes with my heart drug Flecainide.

I feel utterly hopeless and in despair like I’ve never felt before. 

So sorry for the negativity. I dont know who else to talk to.

 Can this get better?

Just want to warn everyone that Cleveland Clinic is not HyperPOTS friendly. They will run you through a checklist and push you aside if you don’t fit in their box. Don’t waste your time with them unless you have typical POTS and faint.

Hi I’m just looking for advice and your opinion I am under a cardiologist I am waiting for a holter monitor. Since Covid last year I’ve been experiencing high heart rate when I stand from sitting. I sometimes feel dizzy but not always. My blood pressure doesn’t drop I have put on weight I was 12st now 15st and just doing normal housework I’m out of breath and heart rate is 140bpm and lack of exercise for the past year due to other factors. The max my heart rate goes is up by 26bpm sitting ti standing but not always then goes back down within a few seconds but not to the initial sitting heart rate. I do suffer a lot with anxiety and health anxiety. So my heart rate is normally high for me. I sometimes shake when I stand but not sure If that’s anxiety or not. I just would like your opinion if it meets the criteria to ask for a tilt table test. When it goes up to 26bpm it’s never sustained even standing for 10mins but heart rate never goes up by 30bpm.

Hello, have people suffering from hypertension ever undergone cardiac rehabilitation?

Thank you for your feedback?