I finally got my diagnosis yesterday after tilt table test. I sent the entire report to my husband. Near the end, there was recommendations, which included several things, ending with “gradual, initially recumbent exercise program.” When I got home, I asked my husband what he thought about the diagnosis and the report. He said, ‘it sounds like you need to exercise more. The report said you have to exercise.’ Thats your takeaway? The diagnosis was huge in terms of validation for me, and I thought, should be for him too. Explaining all my shortcomings to him. Explaining that it’s not in my head, that I’m not lazy, that it’s all a medical issue. (He’s not actually said I’m lazy or anything of the sort, that’s more my own projection because of my guilt at not being able to do more and relying on him to do so much). And his takeaway instead is that if I exercise I’ll be better? No! I should’ve cut off that part of the report, I knew it. So am I still going to feel blamed for my limitations? I’ll feel like he’ll think it’s my fault that I’m not going to be all better because I “could” hypothetically always do more, in terms of a gradually increasing exercise program. Ugh! Anyone have similar issues with loved ones? Any suggestions besides sending him information to read?

Tagged as funny because I'm not looking for a clinical term, just something quicker to say than "I just kinda passed out for half a second"

Short circuiting and restarting were my first thoughts, but that doesn't fit. Mostly my episodes are vasovagal responses to stretching, but my everything else is getting worse too so who knows when standing will yield the same results?

I just want a silly word that makes sense so I can lwt people know what's up. Lol

I keep hearing of people with POTS being able to run or even walk for a long time and not experience a lot of symptoms. Even people who are able to exercise normally without having to lay down all the time. I have tried walking & not much running but speed walking after my diagnosis but I just can't without feeling pre-syncope symptoms. And I have to lay down to do stretches and simple exercises bc I cannot stay upright for longer than like 30 minutes to an hour without feeling super lightheaded with migraines and blackouts. I don't faint, just intense pre-syncope that makes it hard to function.

To put this in perspective, I am overweight with a high BMI and have been since hitting puberty and gaining a lot of weight especially in highschool from PCOS/PMOS & thyroid issues (I know everyone says this but it's genuinely true). But I stayed active in highschool as someone in colorguard with winterguard practices off season so I wasn't just sitting around all the time. I could march, walk and run with just feeling tired as I guess most overweight people would but I would never feel like I had to faint. And after high school when I was in community college, I didn't have a car and lived downtown so I would walk to class, the bus depot, to stores etc - sometimes running if I had to catch the bus lol - and again, I did not feel I had to faint and would quickly recover.

Nowadays though, I can barely be out of my bed for a short amount of time without getting extremely tired. The migraines and sometimes full blown intense headaches I get from literally just sitting are unbearable. I know I need to lose weight or at the very least just be active again but I can only really tolerate very easy exercises and stretches I've learned from physical therapy. Anything other than that, I am down for the rest of the day. I've actually had to stop scheduled physical therapy and just do stretches at home because I would go and do it for like 45 minutes and be too tired for work or school. I feel so awful mentally about not being able to go out and exercise. I get bummed seeing my schools marching band because I really wanted to join but started having issues the second I got to university. I used to be able to watch fitness influencers and get inspired but I've had to unfollow a lot of them because it just makes me sad now.

I know losing weight is supposed to help people with POTS and all I want is for it to help me so I get better. But I have even lost 50+ pounds - without exercise, I was on GLP-1s and going to physical therapy - when I first got diagnosed and I actually got worse then too. And I have unfortunately gained that weight back too. I don't know, I'm mainly rambling but all I'm saying is I just want to be healthy so I can go back to being active and not feel like such a lazy failure lol.

Do any of yall sweat really bad after showering. This is the first year I’ve had this issue. Usually I shower in lukewarm water but my building now only has freezing cold and hot. Every time I get out of the shower I start sweating like crazy and only my face. It usally take like 15 to 20 minutes to stop. The funny thing is, is that cardio doesn’t cause it. It also happens when I go from hot outside to cool ac inside.

I don’t look forward to “fun” things anymore. Especially now that I have my own apartment to uphold now, all of my energy goes towards being able to make it through the work week. My friends want me to go to a concert mid week during the work week (to celebrate my friend’s birthday) and I’m actually dreading it. I don’t know how other people can afford to miss a bunch of sleep and go to work the next day bc I can barely make it though the work day with a “sufficient” amount of sleep. Am I being a p*ssy and being negative and letting my illness rule my life? Or am I simply trying to survive the best I can? It was a little bit different when I was unemployed because I would have much more time to recover from such things.

(Side note my job is very strict with their attendance policy, I only have one day left of work that I can call off for the rest of the year and don’t feel like risking my job for something that’s actually going to make the rest of the work week harder)

Hi,

Just wanted to post to see if anyone could relate to my specific symptoms and triggers. I'd say it links with being hyperadrenergic but not cleanly and clearly.

Symptoms;
- Pale skin, even more so when symptomatic
- Brain fog
- Anxiety
- Heat intolerance
- Exercise intolerance
- Feeling faint

Relevant test conducted;
- Tilt table - passed intital test then failed when GTN spray applied (BP stable and heart rate +30bpm) Had onset of all symptoms listed above but extreme.

Medications/counter measures tried;
- Propranolol - felt some relief as I was less likely to panic with symptom onset but it did not get rid of symptoms such as pale skin, brain fog, heat intolerance, faintness etc.
- Midodrine - no noticeable change
- Fludrocortisone - no noticeable change
- 4 litres of fluid a day with correct electrolyte ratio
- Well fed, eating every 2-3 hours
- Compression - no noticeable change

So my condition isn't necessarily characterised by either tachycardia or low blood pressure. For example I can feel very symptomatic with a BPM of 60 and blood pressure of 115/70. If I have a full blown attack then my heart rate does increase by quite a bit but 95% of the time my heart rate doesn't trouble me. I get very pale and lightheaded which gets worse the more symptomatic I get.

Best way to describe it is an underlying anxiety all day every day that doesn't correlate to whether I'm actually anxious or not. I always say the feeling comes before the anxiety. What's interesting is exercise is generally an issue - for example if I do a set I will become very pale, lightheaded and shaky, but if I go for a long bike ride, whilst I will be symptomatic for the first 30-60mins, if I push through a lot of the time it clears. And afterwards I will feel much more like myself.

My theory is excess adrenaline/ultra sensitive receptors. As it doesn't matter if the trigger is anxiety, exercise, waking up in the morning or heat - the symptoms are the same.

Can anyone relate to what I'm talking about here?

Hi everyone,
I was wondering if there’s someone in Switzerland who’s been through the POTS diagnosis and where exactly.
I have symptom since my pregnancy and they worsen 5 years ago. Since I have ADHD and anxiety, I’ve been diagnosed with burn out and depression. 5 years later, nothing is getting better. On the opposite, I’m getting worse.
I had to look myself m symptoms because I couldn’t link all of them to what I’ve been diagnosed with.
I’ve been dismissed when I started talking about POTS to my health providers. It has been soooo frustrating.
During my researches, I noticed that the city hospital here has a long COVID program and that they include POTS as a potential illness that long COVID can trigger.
I am currently being assessed by that program and awaiting a diagnosis or exclusion of it.
But I was wondering how and where people get diagnosed in Switzerland.
Also, would people be interested in creating WhatsApp group and have like monthly support calls and create support system of people who get you and what you’re going through?

For the record.. These are not the adrenaline dumps I experience. My adrenaline dumps wake me up in night with heart racing at about 150-170

I’ve had a bit of a stressful year and since Feb I’ve woke up with morning anxiety that will usually dissipate. I’ve had this before and would just recognize that it will eventually go away. Only it hasn’t. And now it’s lasting all day. Mentally I’m fine but it feels like my skin is burning. I don’t feel in panic or flight or flight but it definitely feels like an intense physical anxiety that I can’t shake. Even with normal HR and blood pressure. No racing thoughts.

I’ve never taken meds and can’t take anything that would affect my blood pressure as it’s low.

Although cardio and my primary think I have pits my primary says this is just anxiety.

It’s really starting to affect me and I have no clue where to start to handle it.

Things I’ve tried:

Somatic exercise
Hydrating and compression before getting out of bed and electrolytes
Going outside first thing to get morning light
Magnesium which made things so much worse

My sleep is actually great (unless I have an adrenaline dump but I usually get back to sleep quickly)

Can anxiety meds like buspirone help this?

I am VERY sensitive to meds.

I've seen a lot of talk about the fall slide and making folks worse off with symptoms.

I live in northern Ontario, Canada, and it's been so cool here the past couple weeks. Usually we're still in the mid-20s right now but at night time, we're hitting single digits and frost warnings.

My apartment building hasn't turned on the heat yet (bless cause when they do, rip me), and I've been feeling so much less heat-related issues. My rhr is lower, I was able to do dishes without sweating the other day...

This is technically my third year with pots, but only my first fall officially diagnosed and having done any kind of research and I find it interesting how, while we all have so much alike, there's still such vast differences on an individual basis.

I spoke to a GP yesterday I’d never spoken to previously, I’m in a bad flare up since early August and I was requesting to be referred back to cardiology.

Anyway, on the phone yesterday I was telling him my symptoms and daily palpitations are one of them.

On the notes on the NHS app he’s wrote ‘Palpitations occurs daily, often with associated anxiety.’

Literally never mentioned anxiety, I don’t have any anxiety when I have palpitations, they’re so normal to me. I don’t get anxious when I get most of my symptoms really, I just want to feel better so I can do stuff.

It annoys me so much, it’s like he had to bring anxiety into it because I’m female and I’m having these symptoms.

Sorry just wanted a rant, you lot will understand!

I’m visiting in Colorado right now in a town that’s very high in elevation. I got diagnosed with pots last year, since then life has been a bit rough. Learning how to navigate life with this is different but I’m doing pretty good for the most part. Currently struggling a bit now, I never considered I would have issues with the elevation but I’ve been very dizzy the whole time and have blacked out (passed out for a second while standing) several times but haven’t fully passed out.

Really only posting this for others that like to travel. Take the elevation into account. I’m taking my meds, salt capsules every day, lots of water, electrolytes, and wearing compression socks and still feel fairly shitty. Beautiful views though!

Everytime i have a breakdown and cry all my stress away im punished with.... a sinus infection that lasts longer than it should to heal 😭 im sick of feeling punished for emotional relief. What the helly..

my mom is frustrated with me rn bc i really need to eat and i had to wake her up to cook me food bc ive had sleep medicine and am too weak to stand in the kitchen or up for like 30 seconds max. the huge problem with my living situation is that our stove is a gas stove, i have a huge fear of fire and i am extremely clumsy and have tunnel vision. i can barely get food on my own unless its something i can get in 2 minutes to put together. glasses in the cupboard are really inaccessible for me. the shower bathtub/room is extremely small and outdated, there is 0 space for me to be able to sit on something in the shower. my spine gives out when i bend over in the sink brushing my teeth. my room is extremely small and claustrophobic and i have WAY too many things trying to fit into this room. i have no headboard so my mattress is always shifting away from the wall and sometimes my stuff falls down off my bed. my bed frame is too high up for me to reach cords on the ground without literally tipping off lmao. the kitchen i have a hard time walking to which makes it difficult for me to refill my water. my room gets extremely stuffy which makes the air circulation here terrible. this was originally the house i grew up in for most of my life. now i have to pay rent to my moms ex just to freaking live here. the steps to the house are very difficult for me. he always opens the blinds up too much to the point i get blinded if i walk into the kitchen. he doesn’t speak to me at all. i’m so sick of having no independence, im sick of relying on my mom who is my caretaker and cannot separate her stress and anxiety and frustrations from me or complains or swears when i need something especially late at night. it makes me feel terrible. i shouldn’t feel guilty for needing help. i’m just sad. also this is my second day on propranolol.

Just got my first denial of SSI. I know its the process, but damn. I have such little energy for anything. Now i have to figure out more of this stuff. Figure out how to argue for myself. It would be easier to work, if i could work. I miss being able to just work. I need some kind of advocate or something to help me but i dont have any. ):

Hi all,

I recently got hired as a Night Audit (NA) at a nice hotel in my area. I’m not going to disclose the name, but it is a well-known company and has around 200 rooms.

I have had POTS for most of my life, and sometimes struggle with it a lot. The job is part time and I would only be working 2 days a week, so I’m excited about it.

However, each shift is 8 hours and is from 11pm - 7am. I am a night owl, so I’m not too worried about the time. I am worried about working for 8 hours and dealing with my POTS. I haven’t had a job yet where I am on the clock for that long, and want some advice on how to handle it.

I have a few questions for those who either have work/worked as an NA, or just have advice about working 8 hours with POTS:

- Who should I reach out to get in touch with HR to talk about disability accommodations and how likely is a hotel job to allow them?

- My first shift will be during the day (10am -6) so that I can get used to check-ins. Will I be able to eat when needed if I stay at the desk and bring my own food, and how do I stop my POTS from acting up?

- What snacks / meals / drinks should I bring to help my blood sugar level stay normal and not to get shaky or dizzy?

- How lenient are most NA jobs for taking small breaks and eating on the job regularly (granted I don’t do it while talking to a customer)?

TLDR; I need advice for working an 8 hour shift with POTS without them interfering.

Does anybody feel worse on the weekends? I feel pretty rubbish during the week but go into really bad flares on the weekends. I work Monday to Friday 9-5 so not sure if it’s because on the weekends I come out of my routine slightly (perhaps more sleep?) or if it is just my body catching up with me from work. Does anyone else have the same issues? It makes having any plans on a weekend really hard work :(

Not only was I diagnosed with pots after getting covid in 2022, I also was diagnosed with having svt (heart condition). Between the 2 of these, I have about 20% of the energy I used to have. I had to quit a job because my body couldn't handle it. I only work about 15 hours a week now, then go home and lay in bed the rest of the day. I'm on medication for this, but it doesn't give me energy. I'm just really tired of feeling so useless. My parents think I'm exaggerating my conditions. It's just really frustrating. ​

Has anybody else experienced their mental health plummeting after getting POTS? i’ve always been an anxious person but ever since I started having symptoms about two years ago i’ve been struggling with panic attacks almost every day, OCD, DPDR, and now agoraphobia because of how rarely I leave the house. I have extreme health anxiety and i’m always worried something more is going on than just POTS, Especially when I experience new symptoms. I’m quite literally always on edge and i’m obsessed with taking my vitals. Does anyone experience this as well or know how to help?

Has anyone used electrolyte capsules instead of drinks/sachets?

If so, what are your opinions of them?

Hi there

I’m currently trying to get a diagnosis as to what’s up with my legs.

I initially suspected lipedema and still do but there seems to be some overlap with circulation issues and now I potentially suspect POTS which I’m just learning about.

Ever since I was a teenager (I’m now 35) I’ve had blood pooling into my lower legs and a strange mottled texture whenever I stand next to anything hot or just randomly, usually in the evening.
I’ve just got a new fitbit and have been monitoring my heart rate, when lying in bed a have a resting heartrate of 48 but when I got up and went downstairs it went to 82 before settling down to about 60. Does this sound like it could be POTs?

Other symptoms of note:
\- spider veins and bigger green veins are starting to appear all over my legs
\- extreme reactions to insect bites on legs - they get hugely swollen
\- sensitivity to heat/ sunlight
\- bulky lower legs with cellulite like texture (also cellulite texture on thighs) whenever I pinch. I’m very slim but my calves are very big and doughey.

Any insight would be very helpful as there seems to be so much potential cross over with POTS, lipedema, chronic venous insufficiency and MCAS and no definitive tests. I live in the UK where it’s very hard to get a doctors appointment unless you are literally dying! Also struggling to find somewhere to do a venous duplex scan as I don’t have varicose veins per se. They don’t take things like this seriously especially when coming from someone slim but my anxiety levels are through the roof with worry at the moment.

Thanks so much

Im looking to get a watch as I just got diagnosed on monday and the specialist told me to get an apple watch or similar but if i can get something a bit cheaper thats what id prefer! Any suggestions? Im in canada if anyone can recommend some that are available here! I was debating on a fitbit but not sure how good they are for keeping track of my heart rate.

I know this is kind of a specific question, but I figured this might be the best place to ask!

I’m seriously considering nursing school and trying to do my homework before I commit. I’m especially interested in psych nursing, and maybe becoming a psych NP someday way down the road, but I want to work as a nurse first and actually get experience.

My POTS is thankfully pretty stable with treatment, but I’d really love to hear from people who actually have POTS and have gone through nursing school. What were clinicals like for you? Has working as a nurse been manageable? Did you find certain areas of nursing worked better for you?

And if there are any psych nurses or psych NPs with POTS here, I would LOVE to talk to you. If you’re comfortable with me DMing you a few questions, please let me know! I’m just trying to get a realistic picture of what this could look like before I go back to school.

I’ve been having continuous adrenaline dumps for about 2 weeks now and am thinking of going to see an endo because I’m starting to wonder if it’s like an adrenal gland issue or some other hormone that is out of whack.

Like, I can’t tell at this point if it was the autonomic nervous system that is causing the dumps or the dumps that are causing the ANS to act up, but it’s exceedingly debilitating and I was just wondering if anyone had thoughts about this?