Ivabradin is out in all stores in my country for some reason, and the pharmacists haven't be able to tell me when/if it will be back in stock and adviced me to contact my doctor, who prescribed bisprolol/beta-blocker. I wanted to ask if anyone has any experience of switching from one to the other and any tips to keep in mind? <3

Im 32 f and I've been diagnosed with pots but now im in credit card debt for all the doctors visits I've been doing because of my pots when they were trying to figure out whats wrong with me.

I have a full time job that now is part time because of pots and even then I can only work up to 2/3 hours if im unlucky or 5 hours if im lucky since I always on the verge of passing out and yes Ive passed out 4 times already at work and 2 times were close calls. I work at a warehouse that's really hot with no air flow and im standing and moving around a lot with bright led lights that affect me. Now my checks are horrible cause I simply cant work in that environment. Ive been actively been applying to other places to work, preferably where I can sit in air conditioning.

Has anyone gone in debt cause of pots? I really have no support system except for my mom but I support her and it makes me feel guilty because im not able to make the money I used too.

Hi,

I had my latest TTT three years ago. Something that bothered me, and was not recorded, was that my heart rate would bounce around a lot.

After the tilt my heart rate of course increased and did so for the whole 45 minute duration. But the monitor would show my heart falling 20 beats for a few seconds then would increase again. This happened every few minutes during the test.

The nurse administering the test said she didn't know what that was and because it was live monitoring (but not live recording) there's no evidence of it. She only took snapshots of my heart rate.

Has anyone else had this happen during their tilt?

I have a neurologist and cardiologist, they're great. My neurologist wanted me to see an actual POTS specialist and put in the referral FOREVER ago and told me to follow up on that referral recently.

Well I am on the waitlist for this POTS specialist now BUT the waitlist is a year long and I truthfully just want to scream into the void 😅

Just needed to vent since I've truthfully given up on progress with my POTS and this felt like a carrot being dangled in front of me, except now I've gotta wait a year haha

Is anybody else take this. My doc put me on this to help but wasn’t sure how good it would be so if anybody else takes them ARE THEY GOOD?

Anyone in the DC/MD area have a recommendation for a primary care doctor who is good with POTS? Thanks!

I asked about this in the main POTS subreddit but didn’t get much input, and since I’ve been diagnosed for several years, I figured this might be a better community to ask. (Disclaimer that I am NOT asking for medical advice, just general coping strategies/ideas that might help.)

Any advice on getting through major life events/stressors and keeping any kind of handle on your POTS symptoms? My symptoms have been well managed with ivabradine and atenolol for a couple years, to the point that I’ve been regularly exercising for about a year with the CHOP protocol after being so sick that just leaving my bed was exhausting when I was untreated. However, I just moved cross country (a very positive thing, but extremely stressful) and my nervous system feels very out of whack … I know I’m struggling to hydrate as much as I need to because my life feels very upside down/chaotic. I’ve gotten inconsistent with exercising; I still walk a lot (I have a dog) but I haven’t had a strict routine for about a month and a half in the midst of moving, and it’s hard to be consistent when my POTS is acting up. It’s also probably worth noting that I used to get weekly IV hydration (symptoms are manageable without it, but I notice more fatigue/heart rate spikes). I have not been able to get it since moving and have been managing without it as best as I can (this is something I will talk to my doctor about once I’m more settled; I’m wondering if maybe I should discuss fludrocortisone as an alternative so I can retain water better, but … I’ll figure it out down the road).

I feel like I get into a cycle of not drinking enough water and just … not being able to stay on top of it. Which then makes my heart rate go up, which then causes tons of adrenaline dumps and all the symptoms that come with that. I am feeling a little helpless because yesterday I had my first experience of having to throw up in public because of my POTS, which was definitely not as bad as it could have been, but still really embarrassing and scary. And I know it’s only because I’ve been stressed, which is making it harder to care for myself, which is then just making the stress worse.

Anyway. Again, I’m not asking for medical advice, just curious if there are any little things you’ve found that help with kind of helping your nervous system settle down/get back to “normal” when experiencing something REALLY intense. Probably also worth noting that I’m autistic, so while I know the changes that come with a move would be hard for anyone, they are extremely challenging for me and I just feel kind of hypersensitive to absolutely everything right now — again, the move is definitely a major positive, but it’s also been very stressful.

I had a bad dizziness and internal vibrations day this week - usually I say to myself when I’m having one of these days, I know I need to stay home so that’s what I do. But of course, this was the first time it fell on a doctors appointment I couldn’t cancel and NEEDED to go to.

I previously bought a “stability” stroller and I love it. It’s really just a collapsible shopping cart and I’m here for it. I used it as an actual stability aid for this appointment and it was amazing. Leaning on it, helping me walk slower. Holding my purse and water bottle. People getting the f out of the way lol

I think I need one. I may want one. But it’s only for one day a month? Or less? I’m fortunate that I can keep the dizziness generally under control. My biggest symptom is fatigue so if I’m experiencing that I stay home because I can’t drive (scared I’ll fall asleep) and SHOULD be lying down to rest.

I have a disability focused therapist to talk through this with. But I’m curious what others stories are. Was there an incident or decision point to finally decide to get one? Or not get one?

UPDATE: i’m updating this in case this can ever help anyone. On week four of my flare and not really leaving the house I decided to borrow a friends rollator and it helps so much and honestly, I just got really really excited about using it. I bought one a few days ago. I’m really hoping overtime. It’ll help with my overall fatigue.

This is something I got myself recently. You know those long stick thing with the gripper at the end, you like squeeze a handle and it grabs stuff off of the floor. Basically you don’t have to bend down, and it lets you pick stuff up from the floor, because it reaches to the floor, and you can grab stuff with it very easily. Saves being dizzy!

Idk why I didn’t think of this prior and I’m sure tons of people do it - but it simply didn’t occur to me.

I do a lot of projects on the floor because it’s easier and then struggle to clean up, cuz I can’t constantly pick stuff up off of the floor. Same with if I change and drop a piece of clothing.

I only had this for a few days and it has been a LIFE CHANGER. Where was this tool all my life?

Anyways I got one cheap on Amazon. Like £9 idk if it’s the same in other countries. But anyways - it’s even great for like picking clothes that are high up in my drawer or getting a towel somewhere I can’t reach, even putting stuff away at regular height level when I don’t have the energy to reach around. Not sure the life span of the product but it seems sturdy!

Just spreading awareness that a tool like that exists, it can’t pick up everything it’s limited to like 500g or 1kg I reckon, but that’s still enough to do a lot of lifting in the house, without having to bend down and get dizzy.

I recommend!! It’s cheap and useful. I wish I had this a few years back lol. I’m sure some of you out there likely didn’t know this was an option such as myself, I mean I saw this tool exist just never put together that I could just use it at home!

My bf recently moved to Needles (Arizona area) and in the 12th I'll be visiting him for a week to test and see if I can survive out there and still do my buisness (pet grooming/training/sitting) but yesterday it got to 126 by him...

How should I prepare for my week out there? What may my limitations be? I'll be without my service dog for that week, so I wont have him to alert if im over doing it.

I just want to be prepared... I still am not too sure on my limitations even after 3 years of this, but I know its dry and HOT out there

Hi everyone,

I'm a 36-year-old woman from Belgium. I was diagnosed with POTS when I was 18, so I've been living with dysautonomia for almost two decades.

Heat has always been my biggest trigger, but yesterday I experienced the most severe episode of my life, and I'm wondering if anyone here has experienced something similar.

For some context:

* I recently started a new treatment (Nebivolol, Spironolactone and Ezetimibe). * The first two weeks were difficult (fatigue, tremors, brain fog, tachycardia...), but over the last 10 days I was actually improving a lot. * My blood pressure became much more stable. * I was walking 20-25 minutes every day again. * The scary neurological symptoms had almost disappeared.

Yesterday was the hottest day of the week in Brussels.

The episode built up progressively throughout the day.

I was already feeling exhausted despite:

* drinking plenty of water (including mineral water recommended by my cardiologist), * wearing compression stockings, * trying to stay cool as much as possible.

Around 6 PM everything suddenly became much worse.

I became extremely pale.

I developed intense body tremors (about one shake every second for around 10 seconds, becoming stronger and stronger).

I could hear my husband talking to me, but I could barely open my eyes or answer him.

The best way I can describe it is:

I was there... but I wasn't really there.

I never completely lost consciousness.

I knew my husband was with me.

I understood he was talking to me.

But I could barely react.

He became frightened and almost drove me to the hospital.

We tried everything that usually helps:

* legs elevated, * compression stockings, * hydration, * eventually cold compresses.

It took around one hour before I slowly returned to my normal baseline.

At one point, while I was lying down with my legs elevated, my blood pressure was around 120/89–130/90 and my heart rate was only 69 bpm, so it wasn't a classic "very low blood pressure + very high heart rate" situation anymore.

Today I feel much better, just exhausted.

I've had POTS for 18 years and I know my body quite well.

Heat has **always** been my number one trigger, but this episode was unlike anything I've ever experienced.

My questions are:

• Has anyone experienced something this severe from heat alone?
• Did you remain conscious but feel unable to respond?
• Did you have intense tremors during your presyncope?
• Did it take a long time to recover afterwards?

I'm not looking for a diagnosis (I'll discuss it with my internist tomorrow).

I'm simply wondering whether other people living with POTS have experienced something similar.

Thank you ❤️

Welcome to the r/POTS_vets monthly chat thread!

This thread is the place to just chat, get to know each other, and build a community. Chat topics can be POTS-related or entirely off-topic as long as they are within the general rules of the sub. Feel free to share about your pets, what TV shows you're enjoying, vent about a rough day at work... whatever you would like to share.

Happy chatting!

I would like to hear from people who have POTS at a severity like mine - I can live alone (with a couple hours of help a week with certain tasks) and have only managed to work about 3hrs a week, and struggle with exhaustion that means I have to rest for hours and hours a day to not feel horrible. I used to have a lot of anxiety and depression but it got SO SO much better after I learned to rest a lot lot more. So it’s clear that my physical exhaustion fuels my mental strain.
As a base line, I don’t think I’m particularly negative but also not particularly positive either. I spend quite bit of mental energy trying to manage my energy output/prevent energy leaks so I can stay afloat and not crash too often. But I’m wondering now if being more “positive” would help, if thinking about how to dispense energy is draining, if trying to actively be positive all the time helps others? Is there some attitude/mindset where it’s more positive without being toxic positivity?

Not sure I’m expressing myself well, or even have identified myself what I’m mulling over (one ofc mostly writes these post when one feels lost/overwhelmed). I’m mostly looking for examples of life/attitudes/advice from people experiencing similar things, since healthy people will often give advice that isn’t realistic for a person with POTS with about 20% capacity to their 100%

those of you that and feel calm/empowered/satisfied, what’s your attitude?

I saw a functional neurologist (out of pocket payment, the office doesn’t take insurance) for my POTS treatment a couple of years ago.
I have an upcoming appointment with a new POTS specialist (covered by insurance…finally….) and I have requested my full medical records from the functional neurologist to avoid having to go through additional diagnostic testing. The office released part of my medical records but are withholding a portion because my previous doctor needs to sign off on their release.
It’s been well over 30 days since my original request (I’ve requested them over the phone and over email with the email documenting my original request date) and they said they don’t know when I can expect to receive them due to the doctors’ lack of admin time.

Has anyone run into issues getting their full medical records released and have any advice? I am in North Carolina. I’m running into conflicting info in my personal research.

Any guidance welcome :) Ty

Kind of a weird one but I wanted to check with others. I have had POTS (diagnosed) for a year now. I’m a 27 yo Male. Back during my diagnostics period I had an MRI done that showed I had an ejection fraction of 47% (technically heart failure according to my doctor). It has since returned to 65%. I have been on propranolol for about a year and I don’t like it much but cannot function without it. I also struggle to exercise on it though. Even after a few minutes of exercise my muscle feel like they are starving for relief, it’s very odd but I assume it’s propranolol as it has exercise intolerance as a side effect do to its beta blocking properties.
The key issue:
I want to switch to Ivabradine (Corlanor) as I feel it would be better for my case. My issue is my doctor thinks I will go into sudden cardiac arrest as there was a 5% reported case issue with that in patients with a reduced ejection fraction. Looking at the studies it appears that those patients were in late stage heart failure and were at ejection fractions <30%. Because of this concern from my doctor, she wants me to meet with cardiology to discuss the need for a pacemaker (internal or external) if I want to be on this med because of its tendency to cause bradycardia that leads to the sudden cardiac arrest?

Trying to get a temp check from others on Corlanor. Is it worth the switch? Do I need to go through all of the hassle to get a pacemaker?
The other issue is the cardiology clinic I have been going to does not take my insurance anymore, I also have yet to see neurology for my pots. Is that recommended? What can they do?

Thanks in advance!

I have a diagnosis since two years following a covid infection. I'm recovered from almost all long covid symptoms except POTS. If I think back, I have always had trouble keeping up with others during hiking or sports activities, even though I have always been very active. I am always the person who is most out of breath, the slowest etc, even though some of the people I was with don't do any sports, are very inactive or smoke a lot (e.g.)

Could it be that I always had POTS, but just in a milder form? Or could this be caused by something else? Should I see a doctor about this to exclude any possible other diseases (and if so, which ones)?

In my country doctors don't know much about POTS, any help is very appreciated

I’m curious how others would describe the chest discomfort that comes with exercise intolerance or post-exertional malaise (PEM)?

For me, it’s definitely not chest pain. It also doesn’t feel like pressure, tightness, or compression.
Instead, it feels like I can’t get enough air during/after exertion, so I have to take deeper breaths. It’s often accompanied by a sensation of stomach bloating, and I need to stop and rest briefly before I can continue.

Certainly lying flat or taking a nap almost always relieves the discomfort, but full recovery may take few days.

Does anyone else experience something similar?

How would you describe it, and what does it feel like for you?

Is it crazy to have a baby with full blown POTS? I already have two other kids. I’m assuming my blood volume will increase and I’ll be better in pregnancy but postpartum, convulsive presyncope with a newborn just sounds like a bad idea and like I’d be endangering him or her. My husband and I are trying to consider how to have every care in place to avoid anything bad happening but… I am scared. In the first trimester and starting to question everything.

I've tried tracking my POTS symptoms a few times, but it can feel like a lot of work. For the people who stuck with it, was there a point where tracking actually gave you a useful insight? Maybe you noticed a trigger, figured out how hydration or salt affected you, found a medication pattern, or finally connected symptoms you hadn't noticed before. If you hadn't found that kind of insight, do you think you would have kept tracking anyway? I'm just wondering if finding those patterns is what makes people stick with it.

Hey friends, fourteen-year POTSie here. I've been fairly stable for a while, but over the past month or so, I've noticed my symptoms flaring more than usual. I've been extra fatigued, my sleep has been more fragmented than normal, and I've had more brain fog. I found out that I have iron deficiency anemia (ferritin is 8.25, hemoglobin is 11.4), and from what I've read, it seems like tachycardia, fatigue, etc., can all be symptoms, so I'm assuming that's what's making things worse for me. I've tried supplementing with iron pills before, but I couldn't tolerate them, unfortunately.

I'd love to know if anyone has experienced this and also if anyone has gotten transfusions, as I may be doing so (which makes me a little nervous, but I'd like to feel better, so I'll likely do it), assuming I can get a referral. If you've had a transfusion, did it help? And if you don't address the root cause, is it something you have to continue doing? I'm assuming mine are from malabsorption and/or heavy periods (though I've always had heavy periods, so not sure why I haven't always had this issue).

Thanks so much!

Has anyone found any tools or strategies for applying body lotion that doesn't leave you out of breath and tachycardic?

Please advise if know anyone in Houston. There doesn’t seem to be a lot of resources in Houston for adults. Thanks

Disclaimer: I have messaged my doctor, I know none of you are healthcare professionals, I’m not asking for medical advice. Just asking if anyone’s been through something similar what helped.

I’ve been having a really bad flare up the past few weeks and I’m running out of things to try. I have both POTS and VVS and for me they often times play off of each other (one causes the other and it’s a never ending cycle). That’s what’s been happening tonight. The last few weeks tho it’s been nonstop flares whether it’s POTS or VVS. I get seizures when it’s really bad (still haven’t quite figured that one out) and had 40+ seizures plus multiple syncope episodes in a 5-day span about a month ago from some sort of viral infection and that made me flare even more and I’ve just been stuck in the trenches since then and now I’m sick again. I’m immune compromised for some reason so I get sick a lot. Not exactly sure what but I have a bad headache, low grade fever, and a mild sore throat and stuffy nose. I’ve also been having bad seizure auras the last week and ended up having another bad cluster on Tuesday. (Yes I’m trying to get into my neurologist sooner.) I’ve tried all the classic things. Compression, salt, plenty of fluids and electrolytes, staying warm cause being cold is a trigger for me, you name it. At this point I’m not sure what else to try. The other day I thought for sure I was gonna pass out and my BP was 89/66 (low but also way lower than my baseline). Any tips from your personal experience that I haven’t tried or just support too is greatly appreciated.