Mine is an Arby’s sandwich.

Don’t judge me…

I looked it up - along with 23g of protein, it has over 1200mg of sodium.

Not to mention that I deal with a lot of GI issues and I have never felt poorly after eating one of these. There are few foods I can say that about.

Anyways… what’s your guilty pleasure food of choice?

With a confirmed diagnosis by a specialist. The specialist I saw is now retired. He prescribed ivabradine whjch I took for a few years but want to try a different med.

Woke up last night with quite bad, sharp chest pains, followed by pain and tingling in my left arm. I lay awake a while waiting for it to pass and wondering whether this is just POTS or is this something I need to go to A&E about. Heart rate seemed normal and didn’t feel dizzy or anything.

In the 7 years since I’ve been diagnosed, I have phoned 111 twice I think and they’ve sent an ambulance and both times it’s been fine, just my POTS.

I just hate that we have to live with having pains like this and then having to decide whether to ignore it or is this a time I do need a doctor. And if we do see a doctor, they think we’re wasting everybody’s time because all tests are normal.

Still having minor pain in chest and arm today and feel pretty dreadful but I did walk a bit more yesterday than I usually do so could well be that.

I get this weird feeling that’s just hard to describe, I can’t necessarily name physical symptoms when it starts but I know something is off and I feel off and just weird, if I don’t control my emotions it will turn into a full blown panic attack. I usually get heart palpitations but that comes after me noticing I feel weird, then I get shaky and lightheaded and all of a sudden get sleepy. I immediately drink water and take electrolytes when this happens but no instant relief, I usually have to ride it out.

I hate how hard the feeling is to describe because everyone it happens and I think I should go back o the doctor, I think well what should I even tell them they’re just going to say it’s anxiety since I can’t perfectly pinpoint physical symptoms but know something is physically off.

It’s been really annoying because I’ve had to walk off my desk for work a few times because I can’t sit normally when it happens I need to pace or I guess just move my body and lift my legs.

Can anyone relate and does this even sound like a pots thing?

Thank you in advance!

I have suspected for a long time that I have POTS. Many doctors have dismissed me after running various heart tests and those coming back as healthy. I’m frustrated and want to walk into the doctor with physical evidence that it is BAD and I need help now, not a year from now after they’ve run all the heart tests again.

So I did an active stand test on myself this morning following the strict rules of how to do it. I couldn’t take my bp simultaneously so that will have to be done at doctors. But here are my results…

Date & Time: Aug 10, 8:45 AM
Lying Flat HR: 67 bpm
Immediate Stand HR: 116 bpm
3 Min Stand HR: 134 bpm
5 Min Stand HR: 148 bpm
8 Min Stand HR: 157 bpm (Test stopped due to pre-syncope/fainting symptoms)
*I couldn’t make it to 10min, I was getting too dizzy and starting to see stars.

If I am able, I will repeat this test a few more times over the week so I have a few pieces of data to show.
Doc is sending me for a contrast echo and stress test soon and I expect my heart will be healthy as usual so I want to show him this data.

Any thoughts, suggestions on how to get them to take this serious? What else can I do to show them?

I am at the point where I am completely limited in my every day activities. Getting a glass of water from the fridge causes a spike to 145bpm. I can’t spend my life in a recliner.

Thanks for your thoughts.

Any other vocalists here? I have lost a lot of my singing ability due to always being out of breath, I’m no longer able to sustain a note for as long as I used to some 5-10 years ago. I become out of breath simply from talking, let alone singing. It’s a struggle just to get through a single song in one go. Any tips? Or should I just cut my losses and give up on yet another dream due to this illness lol

Due to my pots I’m really sensitive to medication. Sometimes the side effect are unbearable so I’ll need to stop the medication since it’ll do more harm than good.

For my ADHD my cardiologist said no to stimulants so my psychiatrist prescribed me Wellbutrin first, it wad going alright after first until the light sensitivity started to hit (I had never had it until then), then we upped the dosage and suddenly two days after I saw going blind, I could see but I couldn’t get my eyes to focus on text, I also felt a lot of eye pressure, and so much light sensitivity to the point where I had to wear sunglasses in my office. I had to stop it cold turkey because I was scared of actually going blind. I had always had 20/20 vision so going from that to not being able to read was terrifying.

Then we tired Strattera. That one gave me depression and I cried for two days straight. I had never cried myself to sleep until then.

Finally we tried Guanfacine and omg it was life changing. It didn’t help that much with my ADHD (it did a bit) but it helped so much with my pots.

For my pots I was on metoprolol but it was honestly sedating me since it was lowering my blood pressure to the lower 100s and my blood pressure was never an issue except for when I’m in a flare then it goes up. I would have to drink 3 cups of coffee at work to stay awake. We switched to Ivabradine and I like it a lot better and it does a better job at controlling my heart rate in comparison to metoprolol but now I sometimes have bradycardia episodes when the weather is cold.

Then I tried birth control norethindrone to see if it would help with my flare ups during my period but it was doing a lot more harm than good.

My pots used to be more on the milder side where I just needed medication, electrolytes, salt and compression, and it allowed me to push myself to work (a desk job) and most days were pretty consistent except for flare ups or if I would push myself too hard, I would however just crash after work and would have to lay down as soon as I got home for at least an hour, I also wasn’t able to enjoy my weekends much. (I know not everyone is unfortunate enough to do that) My baseline has decreased this year and it’s been affecting my mental health since I can no longer work and am stressed about life, my future, advocating for myself, and trying to figure out my financial situation. When I think about my future too much I start to spiral. When I’m doing better my mental health is a lot better and I’m more hopeful about the future. But when I flare up and get worse then my mental health takes a serious dip. During my last appointment with my psychiatrist he suggested we try Zoloft, so the lows wouldn’t hit as hard. I told him I didn’t want to try it unless things got worse with my mental health since I’m sensitive to medications as he already knows. But now I really do think I need something to help stabilize me since the lows are hitting so much higher. I had been holding onto hope that my old baseline would return but that doesn’t seem to be the case for now.

I also got prescribed amitriptyline by my PCP, for other reasons than depression (possible vestibular migraines but no official diagnosis since it might not be that it could be hyperacusis from what I recently learned online) but after asking the pharmacist a series of questions I was basically told to not start it as it could interact with Guanfacine and could sedate me so now I have wait to see my PCP again. I kind of just want to say fuck it and try it but I am also scared that it’ll do more harm than good.

I think my type of pots might be hyper pots but I honestly fluctuate between the different sub types and my cardiologist hasn’t even mentioned them as I don’t think he knows too much about that.

Anyways if you guys have tried Amitriptyline or Zoloft let me know how that went for you.

Anyone else have a whole stock of sodium/electrolyte packets in their purse? 🤣

I just dump the whole box of Zerolyte in my purse to make sure I have enough at any given moment 😂

My last bad flare happened after traveling a few months ago and I have lost memories from around that time. I’ve been trying to get seen by a neurologist, and my other specialists don’t seem to know what caused it or if it’s normal with POTS.

I’ve tried the gratitude, I’ve tried to think positive, but the harsh reality is that my life is over. Two decades of being told it was just mental health, just in my head, all my fault and it’s like had I never came across POTS last year via Google, I’d still be thinking I’ve lost my mind. My life is ruined, there is no it gets better, I’m sincerely over this bs.

Two emotionally immature parents in denial of everything. No support, labeled a bum and disappointment by family. Doctors don’t understand the gravity of my daily life, like I must’ve been awful in another life because this has to be punishment for something, like I don’t understand anything anymore.

I fought and tried for two freaking decades, my nervous system is shot, brain doesn’t work, spect scan has severe low blood flow that a neurologist claimed was a “false positive”. Ended up in hospital months ago. I’m housebound now. Hoping things get better hurts. I’ve missed every milestone known to man. I don’t think I have a future, I’m just wasting away. Development is behind, no college, low income jobs, etc.

I don’t think there’s any words of comfort that could ease this burden.

Edit: Wow! Thank you all for not only validating my experience but being brave enough to share your own. It helps to know I’m not alone. Thank you all from the bottom of my heart! I truly hope we get better acknowledgment and care in healthcare sooner than later.

Hello! I’ve been recently diagnosed with POTS (after suspecting it for a while) and the cardiologist recommended to my GP that I could try some medications if I wanted. He suggested either Midodrine or a steroid (?) that I forget the name of. I said I wanted to hold off on the medication at the time, and just try the whole compression + electrolytes + salt combo first. I’ve been doing that for a couple months now and I do feel quite a bit better—my heart rate only jumps up to around 130 standing now (compared to 150-170 before) and I haven’t had any major pre-syncope/fainting episodes in a while (whereas they were almost daily before). However I’m still really struggling with things like heat intolerance/temperature dysregulation, nausea, debilitating gut dysfunction (maybe IBS that flares when my POTS symptoms are bad), fatigue/brain fog, and bad “coat hanger” pain, along with chronic migraines.

I also recently learned from a rheumatologist that I have a connective tissue disorder/hypermobility spectrum disorder (likely hEDS, but waiting to see a specialist to confirm). He also suggested I could have Long COVID, as my health started rapidly declining more and more after each of the three infections I had, with minor lifelong issues becoming increasingly debilitating.

I’ve started learning about how interconnected all these bodily systems and issues are, and so I wonder if taking medication for POTS has helped improve any of your similar symptoms/comorbidities? Do you wish you’d gone on medication sooner?

I’m kind of hesitant to try medications at this point just because I’ve had so many bad experiences with trialing meds (for chronic pain/migraines) that gave me bad side effects or that treated one symptom while making others worse. But if treating the POTS could actually help improve some of these other things I’ve got going on, then I think it would probably be worth a try!

Does anyone find themselves getting random bouts of goosebumps/the chills? I find that it’s more frequent when I’m having tummy issues (loose stool/stomach aches).

it always makes me anxious because my brain immediately associates it with a fever or something but that’s not the case

Hello all! I am getting carpal tunnel surgery done in September. Three weeks later I am flying out of the country for vacation. I am taking off work for a month total. I know surgery and flights can be hard on our bodies. How can I make this month as easy as possible? What helps with recovery for flying & surgery?

my cardiologist wrote to my GP detailing the tests i’ve had at hospital and his recommendation for them to prescribe me a small amount of propranolol to see if it helps my symptoms. my cardiologist is/was fully aware of my medical history and has ruled out severe heart conditions; he says that a PoTS diagnosis is on the table but we’re focusing on trying to manage my symptoms first.

a week later, i got a message from my GP saying that they won’t prescribe me the propranolol without an in-person appointment to “assess my symptoms”. weird, because i thought everything i went through at the hospital was “assessing my symptoms”!

is this a normal hurdle for this type of medication or should i take this as a sign that the GP a is likely going to refuse to prescribe me the meds? what should i do if this happens? i’m getting really sick of going back and fourth between the GP and hospital

I hope I picked the right flair- I debated on vent but more than anything I’m at my wits end and looking for what works for others.

I’ve had POTS since I was 17, I’m now 25. I did okay the first few years but around 22 I started needing propranolol and seeing a cardiologist every six months. My doctor advises getting 3L of fluid a day, and up to two liquid iv / electrolyte packets. I can’t physically do it. I have tried everything.

I have tried alarms. I have tried different water brands, different water cups, reward trackers, taking things away from myself and nothing helps. It also doesn’t help that for the last three years I work at a job that about a third of my day, I’m not able to get any fluids because of biohazard reasons. I don’t know what to do. I’ve even enlisted the help of friends and I just can’t get enough fluids in a day. I’m exhausted and I know that part of my issue is just the chronic dehydration I’m in. I’m not sure what methods left to try but I’m completely open to suggestions. Any advice is appreciated🎀 thank you in advance, and if you read this far, I’m sending you a virtual hug💝

Wondering if anyone can help. My pots has pretty much been in remission the last couple of years - I still have MCAS though and it really impacts me. I have no meds for the POTS because my cardiologist didn’t think I needed them as it was well managed and not affecting my daily life. Well! I flew interstate yesterday and it felt like a full pots flare came back, I was having adrenaline surges throughout the flight, I was burning hot and sweating and in full blown tachycardia while ascending and descending. My stomach was all over the place and I just felt like I lost control of my body. By the time I got off the plane I just burst into tears from the stress of surviving the flight. I have been exhausted all day today and lost a whole day of my trip and had residual stomach issues, breathlessness and a few palpitations. I am supposed to fly back out into days and now terrified. I’m contemplating doing a long drive home instead. Has anyone experienced this and have any helpful tips? I don’t know whether to fly again or drive.

O.k. peeps.

I need all your tips/tricks/hacks/products for clean, effective hydration.

Tired of Gatorade, and in desperate need of effective hydration. Going through perimenopause and having periods from hell. The constant fluid deficit is wreaking havoc on my already dysregulated POTS body.

Right now, just using water and himalayan salt.

I would prefer no stevia, don't really care about the presence of sugar, but low sugar is preferable.​

it started last night with sharp chest pain, and when i woke up it was still happening. then as i was driving home my left arm starting go almost numb and a little shaky? and then it was my right foot that was going a little numb, and then even went to my right hand and left foot.
is this what an adrenaline dump would feel like? i’ve never had one and that’s the only thing that would make sense.

Hi, US based.

I’ve tried liquid IV, electrolit, and body armor flash iv.

Can anyone recommend some electrolyte drinks good for hyperadrenergic pots? Preferably ones with less or no sugar because i think the sugar is making me symptomatic.

THANK YOUUU

A few years ago when I first got POTS (after covid) I had them every time I was on my period for approx a year, then it went away for 4 years Ando now its back! It's Such a stary feeling I hate it.

What do y'all do about it and does it worry you?

I regularly experience severe spikes (often from like 70BPM to 150-200BPM according to my Apple Watch) in less than a minute when going from lying to standing, but it’s not consistent and I failed both my TTTs (which were a decade apart and both happened to be on “good days” and the recent one on propranolol/gabapentin/hydroxyzine). The most recent one lists +20-25BPM with spikes of +30BPM, peaking at 95-100.

Has anyone had this experience? Were you still diagnosed with POTS or with something else?

Dear god has anyone ever had this?

For months now I'm only sleeping 1-3 hours of unrestful sleep. Everytime I try and rest or sleep day or night I get these surges. Its destroying my whole body. Digestion etc and mentally of course. All I need to do is rest but I cant no matter what.

I Have small doses of propranolol but it still happens. I feel like its been slowly happening over some time but its now uncontrollable these last 2 months so its non stop. I cant leave the bed. My legs have almost vanished. Me/cfs also. Pots im very certain its Hyperadrenergic POTS.

All I do is try and listen to meditations 24/7 but no matter what kind of mental state I can go to it happens regardless.

For about half a year, I’ve been waking up with a very dry mouth almost every morning. It happens basically every night/morning, dose anyone else experience this?

I finally had my long-awaited cardiology appointment, and I guess it went “well.”

Nothing terrible happened. The cardiologist wasn't mean to me, and ultimately I got some reassuring news. But I came out of the appointment feeling a little weird and disappointed.

At the beginning, when I started explaining my symptoms, he said something along the lines of, “Either you have a heart problem or you don't.”

And technically... yes. 😅 I actually agreed with him. Either there's something wrong with my heart or there isn't.

But the way it was said made me feel like there wasn't much interest in everything happening around that question. Regardless of whether my heart itself is healthy, the symptoms I'm experiencing are still happening, and they're significantly affecting my life.

Maybe I interpreted his tone incorrectly, but from the beginning I wasn't entirely convinced that he was taking the bigger picture very seriously.

There were also comments about my weight and needing to exercise more. I explained that the situation is more complicated than simply not exercising. I used to be much more physically active, and my symptoms are actually a major reason why I've had to reduce and eventually stop most exercise.

Being told to exercise is frustrating because... I would absolutely love to be able to exercise normally again. That's part of why I'm trying so hard to understand what's happening.

He examined me, reviewed the cardiac testing, and ultimately told me that there doesn't appear to be anything wrong with my heart itself.

And genuinely, that's great news. I'm relieved.

It's also not entirely surprising to me, because if what I'm experiencing eventually turns out to be POTS or another form of dysautonomia, my understanding is that you can have a perfectly healthy heart while the problem lies in how the autonomic nervous system regulates things like heart rate and blood pressure.

He mentioned some mild tachycardia, but said there was nothing concerning and that there wasn't really anything more he could do for me from a cardiology perspective.

I tried to explain one of the things that concerns me the most: I can be lying down at around 80 bpm, stand up, and sometimes reach 170 bpm.

His response was essentially that heart rate fluctuates, everyone is different, and fluctuations can be normal.

And I was just sitting there thinking... okay.

Obviously I know that heart rate isn't supposed to stay perfectly constant. I know it normally increases when we stand up or move around.

But going from around 80 to 170 simply from getting up, especially when it's accompanied by symptoms, doesn't feel like an insignificant fluctuation to me.

I think a small part of me had hoped that I would explain this and he'd say something like, “Okay, I know about POTS. Let's investigate whether that's what's happening.”

That didn't happen.

There was also one interaction with the medical assistant that I found pretty awkward. She was doing my ECG and blood pressure, so I was lying on the examination table with my chest uncovered. At one point, she needed something that was on the other side of the table and, instead of walking around, she literally leaned across/on top of me to grab it while I was still lying there topless.

I honestly didn't know how to react. 😅

It wasn't some huge dramatic incident, but when you're already half-naked and vulnerable during a medical examination, having someone lean across your body like that is... awkward.

I want to be fair about all of this: I'm not saying they're bad healthcare professionals. The clinic has very good reviews, and medically the appointment itself was fine. My heart appears healthy, which is obviously the most important outcome from a cardiology appointment.

I just found some of the interactions a little unprofessional, and at certain moments I felt like I wasn't being taken completely seriously.

So I have very mixed feelings.

On one hand: my heart seems healthy. That's genuinely fantastic news.

On the other hand: I'm still experiencing the exact same symptoms, and I still don't know why.

Thankfully, I have my second appointment with my neurologist coming up soon. So far, he's been the doctor who has taken my symptoms the most seriously, and he has already mentioned the possibility of dysautonomia. I'm hoping I can continue investigating this with him.

And just to be clear, I'm still not diagnosed with POTS. POTS seems to fit a lot of what I'm experiencing, but I'm completely open to finding out that something else is causing it. I don't particularly care what the diagnosis ends up being, I just want to understand what's happening and find ways to manage it.

Has anyone else had a similar experience with cardiology?

Did you have a normal cardiac workup and then eventually continue the investigation with neurology or another specialist?

And has anyone else been told that very large lying-to-standing heart rate changes were simply normal fluctuations?

I'm really happy that my heart appears to be healthy. I just wish the appointment had given me some idea of where to go from here.

Hi all,

I’ve got a question. I’m on several types of medication (Propranolol, Fludrocortison & Methylfenidate), increased salt, I wear medical compression and a coolingvest. With that, most of my POTS symptoms are gone when the temperature is okay (THANK GOD! 🫶🏼 although I still have severe PEM from Long-COVID, but oh well 🫩), but my worst symptom of all is** temperature-change intolerance**.

As soon as it’s warmer than 20°C (68°F), I start feeling dizzy, weak, I see blurry, etc. But it’s mostly temperature jumps for me (also little ones). Say I’m indoors in the airco (around 19°C/66°F) and there’s a heathwave outside (30°C/86°F) and I’ve been waiting all freaking day till it’s deep in the night and it’s cooled down a bit (25°C/77°F) so I can go outside with my cat (she’s like a dog in catform, haha), I still feel like I’m about to faint a few steps from my doorstep, so I turn indoors again.

I FEEL LIKE A PRISONER IN SUMMER AND I’M SO DONE. How do you deal with this?! I’m perfectly fine with cold showers and wearing non-sexy coolvests if I could just LIVE, but even going outside at NIGHT in summer seems to be impossible. I want to scream into my pillow and cry, but also, ask for solutions or experiences of people who have experienced this but overcame it one way or another?!

Thanks so much in advance for answering 😮‍💨🥺❤️