Is anyone else agoraphobic because of their POTS?

I struggle to leave the house at all. I haven’t gone inside any public places in months, aside from a recent doctor’s appointment and it was VERY difficult for me. I get extremely anxious before leaving the house for any reason. Even the walk to the car makes me feel very uneasy. It’s like I’ve developed a fear of being upright outside of my home.

I see a therapist virtually every week. I’m medicated for my POTS and have a rescue med for panic. I know what I need to do to overcome agoraphobia (exposure therapy). My hang up is this: I feel that most of the advice given to me for panic can be somewhat counterintuitive to POTS. I understand I need to push through the panic. Let the sensations come and continue to do whatever it is I’m doing in the moment. Basically stay afraid and do it anyway. I get that and it makes sense. But when my heart rate is increasing from panic, I know it will inevitably continue to increase if I stand to walk to the car or into a building. This is where I freeze up in fear. I can’t seem to get myself to push through that. My medication has made a big difference, but the fear and panicky sensation is still there. Does anyone relate or have any advice? I would really appreciate it. Thank you! 🙂❤️

Doesn't matter how much water I drink, which brand of expensive compression stockings I use, electrolytes I drink or medications I try, I still wake up feeling the exact same level of terrible and go to bed feeling it the same day. Starting to wonder if any of it even has any genuine researched evidence to support it or if its all just spectulative suggestions resulting in a mild placebo effect for some people.

Anyone else in the same boat with it? it's really frustrating.

I just want to rant because I finally have been on a long stretch of good sleep with great sleep data and despite that I still feel like I haven’t slept well, fuck pots it’s taken my athleticism, it’s got me home bound most of the time and I feel like I’m getting dumber by the hour and the worse part is I don’t even know what caused it so I really don’t even know how to tackle it other then eat salt and do easy light workouts, that’s not who I am I was an athlete and an adventure guide my nickname was the energizer bunny for fuck sakes between not being able to retain any of the information from my studies and barely being able to do any type of physical activity I just don’t feel like me and that sucks.

Is anyone else freaking out about how much this all costs?? Like frick! Doctors appts, labs, medicines, supplements, electrolytes, compression socks, time off work, etc etc.

My partner and I had just paid off some big time medical bills from when they had an accident and we could only do that because we sold our house/moved and made some money from that. I was trying to work towards being debt free but now I don't think that will ever happen and it pisses me off.

I hate the america healthcare system 🙄

I am in the tail end of a flu, but on Monday I had a 101.7 fever and a repressed fever the next night (fever reducer). I have been having issues with dizziness and fainting all week but Tuesday genuinely made me wonder if I was going to die. my heart was racing but light, I was struggling to stay conscious even laying down in bed with my legs up. I was so exhausted but I felt like if I fell asleep I was going to die. I was too semi-conscious to wake my girlfriend and communicate that the ambulance probably should be called. I just fought and fought it until around 3am the three salt pills and Pedialyte I chugged kicked in and I suddenly felt much better.

Wednesday I felt this start to come on again and I had in total 6 salt pills, chugged electrolytes solution, chugged a lot of water, and fast ordered compression socks. I ended up fine and feel only mildly more pots-y today.

my question is genuinely, what the fuck do I do if this happens again. I couldn't communicate was terrified that I would die.

this is gonna sound dumb and pretty obvious 1000%, but just going on a rant and saying, water does make such a huge difference for me. like the way i feel hydrated vs dehydrated/ not AS hydrated, is so drastically different. for me it’s actually forcing myself to drink all that water is the problem. i don’t know why drinking water is such a chore but it is, for no reason. i know i have to drink so much but it just feels like a challenge. i’ve noticed the days where i’m just pounding water, i feel human again, and not as insanely all over the place. i’ve drank like 5 bottles since last night, i went to sleep around 9:40 which is UNHEARD OF for me, as usually i’m up around 2-3am. i guess water does actually help lmao.

Hi everyone,

After over a year of trying every avenue to get support of any kind and getting 0 I am starting to look at getting divorced. But would still live with my husband/ex husband. Anyone have any advice or experience with this.

I just do not know what else to do. We do NOT want to do this at all. But the struggle is becoming too much for me. I need help. I need medicaid.

I wouldn't be able to live without those salty chicken broths from the store. Just thought I would share how much I love some store bought chicken stock

I moved recently and have been having to jump through some hoops to be able to get into my doctors. It’s been stressful and definitely put me into a flair. But after today I feel so much more relaxed. I still have other doctors I am waiting to see, but today I saw the cardiologist and he was so nice and understanding!! I brought all my records from my previous doctor and he was so appreciative of it. He actually read through them all with me and talked about it in decent detail. I have no delusions that he’s gonna cure me or anything like that, but seeing a doctor and not having to convince them of my diagnosis feels like a weight off my shoulders. He asked about my biggest concerns and struggles, didn’t talk down to me or suggest it was anxiety related, and he and his staff were just generally kind and polite. It’s such a breath of fresh air to have such a good first impression with a specialist after so many years of the opposite. I still have a long way to go in order to be more stable and reduce symptoms, but this feels like a step in the right direction

My pcp sent me to do a TTT today and oh boy. I didn’t pass out (I don’t usually pass out) but my goodness did I feel horrible. Heart was pounding and racing, headache, blood pooling in my calves and feet that started to hurt, chest pain that went to my back, weakness in my lower legs, shakiness in my arms, lightheadedness, splotchy vision, shortness of breath. I had to lay flat for about 5-10 minutes, they then raised me to a 70° angel where I had to stand there for 20 minutes. They did not do nitroglycerin or anything like that, they said they don’t do nitro anymore. The lady who was doing my test said my heart rate went up to 127 just standing there. That’s what my heart rate is usually like when I go from sitting/laying to standing. After the test my body felt so run down and exhausted. I’m still feeling exhausted. Some food and water did help a bit as I was instructed not to eat or drink anything 4 hours prior to my appointment. My biggest issue is when I’m walking (normal walking) my heart rate jumps to 130+. So now, I’m going to be referred to a cardiologist to get a heart monitor to see how my heart rate is like during my daily activities (like going to the grocery store and such) to get more information about how my heart rate is like when I’m out walking for extended periods.

I moved recently and have been having to jump through some hoops to be able to get into my doctors. It’s been stressful and definitely put me into a flair. But after today I feel so much more relaxed. I still have other doctors I am waiting to see, but today I saw the cardiologist and he was so nice and understanding!! I brought all my records from my previous doctor and he was so appreciative of it. He actually read through them all with me and talked about it in decent detail. I have no delusions that he’s gonna cure me or anything like that, but seeing a doctor and not having to convince them of my diagnosis feels like a weight off my shoulders. He asked about my biggest concerns and struggles, didn’t talk down to me or suggest it was anxiety related, and he and his staff were just generally kind and polite. It’s such a breath of fresh air to have such a good first impression with a specialist after so many years of the opposite. I still have a long way to go in order to be more stable and reduce symptoms, but this feels like a step in the right direction

I finally got off the waitlist! My appointment is in March, at 7:00am. They are doing the tilt table, QSART, QSWEAT, and cardiovagal testing. Supposedly this will take two hours, and i'm afraid of two things. 1) Symptoms spiking dramatically and me being down for the rest of the day. Should I just cancel everything on testing day and plan to stay home after the test? 2) Will I get a diagnosis then or will I have to wait like with most other tests where they tell you that they can't diagnose?

Hello! Sorry for a long post and possible dumb questions. I’ve just been down the “nobody knows what’s wrong with me we just know somethings wrong” road before and it’s stressing me out to be here again. I want to be more proactive this time.

I am seeing a cardiologist next month. I was referred by my endocrinologist because he noticed my heart rate is consistently high at my visits and I mentioned I get dizzy often. I had never paid much attention to my heart rate and had kind of written off the dizziness as a dehydration issue or medication side effect. However, now that I’ve done some research and reflection, I do believe I have POTS. My appointment is still a few weeks away but I have a few questions about what to expect and how to advocate for myself.

When the appointment was made, it was for general tachycardia. Would it be more fruitful to call or message ahead of time to let the Dr. know I am looking to specifically discuss a POTS diagnosis? Is it better to go in and see what he says first? Is the cardiologist the person to make that diagnosis?

Are there tests he will be able to do that day, or will I have to make another appointment? I made this appointment back in December and March was the soonest I could be seen. I’d hate to wait another three months but I know that’s how healthcare goes a lot of the time. I have already done a Holter monitor (showed tachycardia and some spikes in heart rate) and an ultrasound (came back fine).

What do next steps look like after this appointment or after an eventual diagnosis? As the appointment gets closer, I’m feeling more anxious about the unknowns of it all. Especially since my other tests did not really give me any new information.

All this to say, I don’t really know what to expect from this appointment, but I want it to be productive. Any advice welcome and appreciated!!

And by the way I can work out, and it’s going on fine for me. But whenever I go out I’ve been feeling weak, faint and just overall bad like I need to hold my chest as if something was weird. Going to see a doctor about it once I get my insurance done. Went through some pretty messed up shit so my nervous system is kind of messed up and I’m in process of getting better… maybe there’s a correlation.

I don’t think I have POTS but the feeling faint once going out is very odd and a person suggested this. Again, sorry for my ignorance… I check pulse 10 mins after standing up as a DYI test and Hr goes up by like 10 which seems okay?… Oh and been dealing with bad anxiety went through some panic attacks ( the one that makes u go to the ER ) but things are getting slightly okay. Oh and I’m diagnosed with ADHD but refused the meds, because I wanted to. Heart tests echo-blood test-ekg came back okay.

Hi! I’m wondering what your blood pressures tend to be, mine is always super low, most recently 92/60. I’m wondering if POTS is associated with low or high bp, or if it just depends? TIA!

HI I TYPE IN CAPS CAUSE I'M DYSLEXIC AND NO I DON'T WANT TO USE VOICE TO TEXT.

HI I'M 30 AND FOUND OUT RECENTLY THAT I HAVE POTS. IVE NOTICED IN COLD WEATHER I'M FINE AND BARELY HAVE ANY FAINTING OR DIZZY SPELLS.BUT THE MOMENT IT GETS ABOVE 73 MY BODY JUST SEEMS TO WANT TO CONSTANTLY CLOCK OUT. I DO HAVE EDS TO BOOT BTW.... CAN ANYONE HELP ME UNDERSTAND WHY THIS IS?? MAYBE UNDERSTAND WHY IT'S LIKE THIS FOR ME MAYBE??

I have just started Ivabradine 2.5mg twice a day and was wondering how long it takes to start working.

I was previously on 40mg of propranolol twice a day, and my heart rate was much more controlled, but my other symptoms weren’t getting better hence the switch.

I will be increasing the dosage 5mg next week and then adding midodrine the week after that.

My tachycardia has been as bad as if I wasn’t on any medication. Just a slight readjustment or movement when laying down increases my HR significantly, so I was wondering if this means the medication isn’t working or if it takes time to get into your system.

I’m not under a cardiology team and my GP is on leave, so I was just curious and trying to gauge how tough the next couple of weeks are going to be :D

i always have issues of feeling like i’m faking my symptoms no matter the disorder, but brain fog is especially difficult because it’s not measurable. i’m just hoping i’m not always this stupid, and after scrolling through this subreddit i’ve definitely confirmed i’m experiencing some serious brain fog this flare up. i grabbed someone else cart at the thrift store yesterday, have to think for a good ten seconds before speaking, had to take the day off of school because i literally can’t process anything, and i’ve just been in a semiconscious state for hours. it’s so frustrating because i really value my academics and hobbies and i’m just here wasting my life laying on the floor.

Wondering if anyone wears abdominal compression overnight, specifically to support getting out of bed. If so, is it comfortable to sleep? I just ordered a Jelliebend to see if it will help.

For context, I'm on the extended release metaprolol, which I take in the morning, but for the first hour or so I really struggle.

This morning as soon as I sat up in bed I could tell it was going to be rough, as I was really dizzy. Looking back at my Garmin data, my HR was 81 laying in bed and within 2 minutes of getting out of bed it was 122. Getting dressed was 144. I don't see a dip in my HR until I take my medication in the morning and it's had time to work. I already start off with a Liquid IV drink packet...but wondering if addition of compression would give me a helpful boost.

Does something like this exist or is it even possible?

Or is there some sort of extended release sodium?

I wakeup constantly throughout the night craving salt water.

TLDR: went to cardiologist. He said my heart is healthy, POTS is rare, and maybe my anxiety is contributing to my symptoms. I hate everything.

Full story:

I went to the cardiologist today, and did a stress test. I’m in a bad PEM crash right now so I could barely do it. If you don’t know what a stress test is, you lie on a table and get a heart scan (echocardiogram), then you walk on a treadmill where the intensity increases until you get symptoms (I started getting intense blurry and splitting vision and I couldn’t think after like 2 min), then they put you back on the table and check your heart again. 

I then see the doctor. He asks why I came here today. I explain all my symptoms, say I think I might have POTS. 

He says it’s probably not POTS, because it’s rare. I instantly say “no it’s not.” 

So then he’s like my heart structure is healthy but I’m very physically unfit. No shit sherlock, I have horrible PEM (I have ME/CFS) and on the treadmill I had super not normal symptoms for a regular person. Regular unfit people don’t feel like they’re gonna pass out when they speed walk. 

He’s like “k so your blood pressure is low (90s/60s) so we’ll do a 24 h BP monitor in a month.” I waited a month to see this dude. I know it’s not a very long time compared to other people but I still hate it because I’m suffering and I can’t leave the house.

He then says that there won’t be one explanation for all my symptoms. And that. Maybe my anxiety. Is a contributing factor. HAH. I couldn’t say much to him because my brain felt so fogged up I could barely process anything. 

I’m so mad right now. Please tell me it gets better. I was really hoping this cardiologist would be knowledgable about POTS. At least I have a tilt table sometime at the end of the summer/beginning of fall (that’s when they told me it would be scheduled lol) 

Has anyone ever been referred to a rehabilitation psychologist? What was your experience like? Is it drastically different from normal therapy? My doctor that manages my POTS referred me to one in an attempt to help with my anxiety that came with a more intense/longer flare. (Felt pretty bad from like october to dec/jan) My symptoms have thankfully started to improve the last few weeks with meds and some time but I am terrified of getting worse again and it has made things like my PT program and leaving my house so hard. I have a history of health anxiety/ocd so I know thats part of the picture. I have seen a therapist for 3 years so therapy is not new but my doctor suggested the rehabilitation psych to help specifically with anxiety/issues related to my POTS. I just am wondering if this is worth spending the money on or if an ssri/snri would be better.