r/POTS

I had palpitations and heart racing on day 2, which means no more Vyvanse for me.

Hi all! 29F here and I’ve been on Corlanor since 2019, when I was first diagnosed with POTS. I have been thrilled with it all these years and find it very helpful. I am very fortunate that my prescription insurance covers it 100%. I went to refill it and it was out of stock at every single pharmacy nearby except one. I refilled it and instead of showing Corlanor, it showed the generic, Ivabradine. I spoke with the pharmacist and she told me they will order Corlanor for me. I got an alert that it’s ready for pickup but it says Ivabradine and not Corlanor. I know Amgen discontinued it or something, so I’m wondering if it’s just not available anymore. I’ve heard horror stories about the generic not working as well. I’m wondering if anyone has any positive stories? I will not be able to function if my medication doesn’t work properly and I work an active job, and it’s very hot in Southern California right now. Unfortunately, I can’t afford it from a Canadian pharmacy especially because I take two different dosages for AM and PM. I’m having the worst anxiety over this.

I feel like I may not be drinking enough water and I know it varies by person but I'd like an idea of how much hydration y'all are taking in within the first hour of waking up.

I also just wanna see if it actually makes any difference to pile on the water within an hour of me waking up. I don't really drink enough in the mornings, I feel. Not electrolytes just water alone. Thanks! 😊

Hi, I was recently diagnosed with POTS and have been talking with my doctor about my usage of energy drinks. I’ve seen a few posts about this but none were quite specific enough. I’ve cut back on my caffeine intake by only having one can a week instead of my one can a day since my recent graduation. My doctor is firmly against my consumption and has told me the detriments it can have with this recent diagnosis. However, they are pretty much the one thing that gives me joy in life and I’m not willing to completely give them up. How can I better manage my symptoms and still indulge?

Anyone feel significantly better with compression wear or sodium + fluids, particularly with Orthostatic symptoms? Does it actually make a difference? I never took these seriously, I always thought my condition needs much more than such conservative treatments. Wondering if I’m wrong. Please share if and how compression wear and sodium + fluids help you

After I climbed the stairs at work while struggling with a viral infection that worsened my POTS symptoms, I experienced severe tachycardia and dizziness and ran out to go to the ER. My GP later put me on sick leave for a week, and I wrote to HR to apologize and explain that I have a viral illness which has lowered my physical condition, which was already poor due to underlying POTS. They sent me a very kind and empathetic response, asking me not to worry about work and to put my health first.

I also requested to be placed on the ground floor, so that I would not have to climb stairs anymore, considering that they have strained me since the beginning, but I was trying to endure them silently for fear of being perceived as "difficult" and "problematic" and being accused of seeking attention or whininess. After this episode, I decided that repeatedly climbing the stairs every day - for every tea break, for every bathroom break etc. - was too much, especially since it was already impacting my work - I could not pay attention to my colleagues during video calls because I was distracted by my dizziness and tachycardia. I also mentioned to them that it took me six months to recover the last time this happened to me, so I also requested work from home as a backup plan in case I cannot come to the office at all. HR was very understanding and offered me both accommodations.

A week later, my viral infection has resolved, and I feel mostly as I did before it, but it remains that I find the stairs at work challenging. I therefore informed HR that I would be returning to the office, but that I would like to work on the ground floor. They agreed, and now I feel very guilty and ashamed. I feel that I do not deserve such a generous company; that I should just have put up with all my symptoms without even going on sick leave for my viral infection; and that I should have continued to climb the stairs indefinitely, at least until I fainted on them, which would have visibly "proved" that I have a legitimate problem with such physical exertion. I am afraid that they all see me as dramatic, spoiled and a liability for the company. I am beset by devastating anxiety as I await my return. Rationally, I believe that I ought to be allowed to work on the ground floor because climbing the stairs was objectively harming me, but emotionally, I cannot accept the fact that I requested an accommodation. I had not done this at any of my previous workplaces.

I used to drink a LOT of coffee. Now as I have gotten older, my pots symptoms have increased and they seem at the worst lately. I am really struggling with morning symptoms. About 9 years ago I could drink 3 cups of coffee a day. Now, I can barely drink half a cup without it making me feel crazy (tachycardia / palpitations). Please share your experiences

Hi everyone, looking for a new doctor to manage POTS medications. Dr. Polizzi left NYU and while the office gave me some referrals for other drs none of them take my insurance (Fidelis Care from Ambetter Silver Plan) except for one and they are booking new appts for June 2027. They said they gave me enough refills for a year (but I’ve had issues with the office in the past). So if you all know anyone in the tri-state area that would be most helpful! Thank you!!

I am wondering what people wish existed if you could have a dream world for dealing with POTS. Or, tell me if these things DO exist??

Personally I wish there were online drop in support spaces for chronically ill people. Like a hangout spot where you can help each other brainstorm the same sorts of things we talk about here, but just with the added benefit of using video or voice (or even messaging i guess!) for a slightly more feeling of talking to real humans and being less alone.

I personally would want video and body doubling of some kind while i make all my stupid medical calls etc. Where someone who gets it could just sit w me while I do it!

I also wish there was a free service that would locate disability services in ones area. I just learned today that theres a way to sign up for a van service to my appointments in my area. It made me wonder if there are other programs or even places that give Lyft and Uber vouchers???

Has anyone lost weight and found that it helped their POTS symptoms? I’m 5’4” and 190 lbs and I have hyperadrenergic POTS. I know my weight it definitely contributing to my blood pressure being high but I was wondering if losing weight would help with the POTS fatigue as well. Has anyone lost weight and found it helped their POTS fatigue?

Normalyte electrolytes. I’m posting this as a genuine warning because I really wish I had known this before placing my order.

NormaLyte’s website says they ship to Europe, but their European orders are currently fulfilled from a warehouse in the UK, which is outside the EU.

This means that when your package arrives in an EU country, it is stopped at customs and you are then asked to pay the applicable import VAT/taxes and customs/handling fees before the package can be delivered.

In my case, I ordered €47 worth of product, and the import taxes and customs/handling fees came to €50 extra, more than the value of the products themselves.

Many other websites outside the EU that collect the VAT at checkout through the appropriate system, so you know what you are paying upfront and don't get an unexpected customs bill when the package arrives. With NormaLyte, that isn't currently the case. The VAT/import charges are not collected at checkout, and there was no clear warning at the point of payment telling me that my order would be shipped from the UK and could incur almost another €50 in charges. I only discovered the actual cost once the package arrived and was stopped by customs.

I ultimately decided not to pay the additional charges, so the package was returned and I never received the product. As a result, I can't even tell you whether NormaLyte works or not, I never got the chance to try it.

I'm not posting this to attack NormaLyte. I contacted them directly, and they explained that they are a small business and are working on improving their international fulfillment and tax/shipping setup.

But I still think EU customers deserve to know this before placing an order, because finding out about a €50 additional charge only after your package has arrived at customs is a very different experience from knowing the total cost upfront.

TL;DR: If you're in the EU and considering ordering NormaLyte, know thar your order will be fulfilled from the UK (not EU) and import charges will apply in your country when it arrives at customs.

Maybe I’m spiraling, maybe I’m just frustrated and sad but I’ve recently gotten diagnosed with pots after years of undiagnosed symptoms.
I’m at a point where I’m so tired. I’m so lightheaded. I’m so dizzy. My neck hurts. I’m anxious to exercise, anxious to go to work, anxious to hang out with friends, anxious to go out because I’m scared I’ll feel sick.
I just want a normal life. I’m not even like a terrible case either but it’s affecting my life. I used to be healthy and active and energized.
I’m feeling a little hopeless lately. My doctor prescribed iron for a year so I’m hoping this helps as my ferritin levels were extremely low, but is there anything else I should be doing? I’m drinking my electrolytes, wearing my compression socks, eating less carbs and more salt, eating more smaller meals. And although these things help, I don’t feel normal still.
My eyesight bugs me the most? I always feel dizzy or like crosseyed or something.
Help please? Should I talk to my PCP about physical therapy or more tests? I just don’t know where to go from here.
Thanks! 😩

I’m having constant heart palpitations … I’m sick of it they feel like my heart is stopping then restarting with a flutter. I just had one that felt like my heart rate went rapid and then fluttered about in my chest and stopped. It was so frightening I stopped everything I was doing (I was playing a video game in bed eating some cheesecake) how can I convince myself that I’m not going to drop dead? Because they feel so intense and scary

It’s interfering with my ability to work. I’m waking up every day tachy, nauseous, needing to vomit or have some kind of GI episode in order to reset. I just lost my brother 3 weeks ago and now I’m starting a job as a new grad nurse. The stress is unreal and I don’t know how to manage this. I don’t know why I’m posting this or what the point is, I just feel like shit 😭 any recommendations for being tachy at rest?

I had a tilt table test today and the administering doctor told me I definitely didn't have POTS, but did have vasovagal syncope. I've never fainted at home, but have severe chronic fatigue, and my primary has been concerned I have POTS. I was satisfied with this diagnosis because the doctor who did my TTT said my fatigue should improve with the usual POTS-style lifestyle changes. I've seen some improvement previously with increasing sodium intake and compression garments, but I wasn't doing enough of either of those according to this provider.

However, I got home and checked my record, and my record says I've been diagnosed with POTS specifically. I'm very confused, and the MyChart system won't let me contact the doctor who oversaw the test. I've reached out to my regular cardiologist, but he specifically does not treat dysautonomia, so I don't know how much help he'll be. He's also going to be on vacation for the next few weeks. Oof.

I'm willing to post the TTT notes if anyone is able to help me understand them. I'm not asking to be diagnosed, but I need to be able to communicate to my other providers what I'm actually experiencing, and I don't know if I need to find another cardiologist (although my local POTS specialist has a 2+ year waitlist). I have a premed degree but honestly I am having such a hard time comparing the literature and my procedure notes.

I don’t know what to do. My doctor at the long Covid clinic is basically insinuating he won’t see me anymore if I don’t get compression garments that fit. My measurements don’t fit a single size chart I can find for 30-40mmhg thigh high, pantyhose, or even knee highs. I’ve tried several brands of thigh highs and because my foot is so small, the foot ends up in my ankle even the petite lengths are too long to and end up in my crotch.

I’m a size 6 shoe and only 5’1” and have extremely skinny ankles and huge thighs. (And no, none of my clothes fit).

My ankle is 6.5”. I have not found a single pair not visibly loose in the ankle. He says this is not an acceptable fit.
My calf is 15.5” and every knee high I have has rolled down because my calf is too big.
My thighs are 26”. I can’t even pull up most garments that fit the rest of my body.

I don’t know what to try. I’m beyond frustrated. I will literally buy something custom sized but can’t find any. Please tell me if there’s a place that does custom. My measurements are so far out of the size range for half of these garments that the companies won’t sell them to me (for stuff that needs a prescription).

Hey everyone, I have just been prescribed my first medication for POTS and just wanted to hear your experiences (positive and negative) regarding Ivabradine. And anything you wish you knew before you started - thanks in advance! ♡

Has anyone else experienced an increase in dental issues? Over the course of the last 7 years since being diagnosed my cavities are bad. I brush, water-floss, regular floss, you name it. It’s so frustrating because I had such nice teeth after braces and now I’m riddled with cavities in all of my back teeth.

My lovely cardiologist told me I was too old to be diagnosed with POTS at the grand old age of 42. He told me it was a 'young ladies' illness and that women over the 40 don't get it so I couldn't have it. Although I had all the symptoms he diagnosed me with OH instead and told me to wear compression socks and add salt to my water. Since then my health overall has gotten worse, I also have progressive MS, ME, Endo, and lots of other things (like many of you do). But my heart rate is now rising from around 60 to over 125 every time I stand up and take the smallest of steps and I just don't know what to do?? I feel horrendous, my body is already weak because I've been throwing up a lot lately (due to other illnesses) and I'm struggling to get much food in. Can anyone give me advice on what steps to take next please? Is there anything I can do at home or do I need to asky GP to refer me to a specialist? I should still be on the cardiologists list so getting an appointment back there might be an option. I just need some help and you guys are the experts! Thanks so much.

*UPDATE*

I don't know how else to answer the questions asked so I'm hoping this works and you'll see it. - My blood pressure drops any time, I can be stood up, sat down, lay down etc. I'll normally get a warning wave (the only way to describe it, sorry). Sometimes it just hits like a brick wall though! I just feel horrifically sick, dizzy, my sight can disappear, sound can go or it can range from double vision to full on fainting. My blood pressure drops to, for eg, 82/47 (today's reading), it does improve if I put my feet right up and just sit still for a bit. I do tend to get it happening more when I am more upright than flat but it can happen literally anytime. The doctor diagnosed me with OH because I had to give him 2 weeks of monitored readings and because my blood pressure did change slightly from lying to standing when I was in the appointment. But considering everything I was telling him about the HR changes it was just a bit confusing. At that time it wasn't as bad as it is today, but it went up from a resting rate of mid 50s to around mid 90s on standing (he didn't get me to try and walk as I was in my wheelchair that day so we just did sit/stand). He told me that because it didn't go above 100 was another reason it couldn't be POTS. It's obviously gotten worse since.

I have also been diagnosed with hEDS, dysautonomia, ME, endometriosis, progressive MS, osteoarthritis and my GP thinks MCAS because of all the random things I'm allergic to. But she has no idea where to start with diagnosis because her protocol said I had to go for a blood test while I am in the middle of a reaction. Obviously, she didn't want me to do this as it meant exposing me to something I was allergic to first. It all seems a bit backwards to me, surely there has to be a better way or a specialist I can be referred to? I know they are trying to save money and do more things in primary care but it doesn't always work.

To those of you with PMDD, ADHD, MCAS, and/or POTS/dysautonomia who take (or have taken) a gestagen (progestin-only) pill: I know I can't ask for medical advice but I'd appreciate if you could share some experiences (or give me a reality check).

My POTS symptoms get much worse during my period, and basically everything else gets worse during luteal (especially ADHD, also mood, brain fog, but also physical stuff like fatigue). About 10 days before my period, I'll be in a flare. So my idea was to try a BC pill (I don't need birth control though). Went to the gyn and sadly they don't have much experience with my conditions.

My hope is that I'd no longer have a cycle, therefore:

- no blood loss (which I guess worsens POTS)

- and more importantly, no more luteal crash.

My concern is: can I expect my symptoms to be as they are now on "good days"? Or will I actually be in constant luteal, so even worse than now? I know an estrogen pill would probably be a bad idea, hence I'd go for the progestin only option.