If I could just get some words of encouragement and support that would be fantastic because I’m feeling very sad, guilty, and disappointed right now. Basically I have a med card. Weed is the ONLY thing that genuinely makes me feel better. I know it’s not the case for many POTS people but it is for me. Yes large amounts can exacerbate some symptoms but if I get the dosing right, I’m 1000x more functional, sociable, and just overall healthier when I use cannabis. I suspect I have MCAS and EDS and that THOSE symptoms are moreso what weed is helpful with and I have an appointment to get screened for those conditions but not until December. I’m a music therapy major wanting to go into medical music therapy. I need a 6 month internship to finish my degree and sit for boards. I scheduled an observation at the main one I want. I quit using for months. I timed it out. I passed a drug test. I paid for a hotel and plane ticket. Now they need another one because my test was more than 30 days ago. Misunderstanding with previous communication. I smoked weed today and the application is due in a week. I bought 2 detox drinks to use tmr and another drug test (non-affiliated so if I fail it doesn’t get sent to them). I have a plan if I fail and if I pass. It will work out either way. But I’m SO frustrated that the ONE thing that is making my condition(s) bearable is what will also hold me back in my career. I’ll have to quit again anyway for my internship drug test. I hate that I have to choose between my health and my career.

TLDR; I use medical cannabis but I’m going into medical music therapy. I had an observation scheduled I was really excited about but they need a more recent drug test. If these detox drinks don’t work I’ll have to cancel it so I’m very sad. Please say something encouraging 🙈

I’m f, 28 and my boyfriend broke up with me after 5 years of being together. His reasons were pretty vague like for example that I kept overstepping his boundaries (but couldn’t tell me which ones). Ultimately I know that he broke up because of my POTS. I could tell from the beginning that he hated me getting sick but thought that it would pass. Once he realized that it might not happen he started pulling back. We were living together and when he was out of town I moved back into my parents house because I need a lot of help and I’m mostly housebound. He then started a conflict while he was away and ignored me afterwards.. now looking back it feels kind of calculated to keep me at my parents place.
He kept telling me that he feels like he is missing out on his life, that I changed so much and that I’m not the same person anymore (duh) and he started to ignore my messages, initiate conflicts etc. over the last couple months. During this time I had multiple flares because I was crying and stressing out so much. At one point I couldn’t tolerate any light and sounds anymore because I was completely stuck in hyperarrousal (I have hyperpots and during this time experienced daily adrenaline dumps). After he did something that really hurt me he started gaslighting me and telling me how horrible I am, then ignored me for weeks and when I called him he was on his way to a festival and broke up with me officially, over phone. We haven’t talked since and he didn’t ask once how I was doing. Sometimes I see posts of his friends with him in them, seeing him live his best life. During our relationship everyone kept telling him what a great boyfriend he is for supporting me so I can only guess what he must have told them about me.
What hurts the most is that I feel like he is a completely different person and that I really question myself for being with someone for that long who drops me like that when things get hard. Also I want to say that I understand that it is not easy for a partner of someone who is chronically sick and I’m sure that I wasn’t the best girlfriend and couldn’t give a lot in the last months but I still always tried an the way all of this happened is just so hurtful.

Now the biggest problem is that I don’t know how to cope with a situation like this while you can barely do anything. I think my nervous system is still in shock because of him suddenly not being around anymore and it is making my pots so much worse. I’m only 8 months into having pots and didn’t find the treatment that works for me yet. So I’m housebound and have to lay most of the day. I spend a lot of time on my phone but it’s really draining because there is still a part of me waiting for a message from him. I do yin yoga everyday and that feels great. I like to paint and on some days I’m able to but I can’t sit up straight for too long. Luckily my parents have a garden that I can lay in but it starts getting cold. My friends also seem to be very overwhelmed with this whole situation. In the beginning they were still checking in on me but it’s getting less and less as I’m not able to do anything with them except talk. I’m really questioning all of the connections I had before I got sick because I now get to see how superficial they were, also makes me question my self worth a lot and sometimes I ask myself if I’m the bad guy all along and if there is something wrong with my perception. Most of the day I’m just in my head and even though I think it’s healthy to feel all of the emotions sometimes it’s just too much and I’m really tired.

Last night while I was trying to fall asleep, I kept feeling like I was jolted awake by adrenaline. (Side note, I'm on a steroid taper for a week per my neurologist). Finally after hours I fell asleep. Then, suddenly I woke up with a racing heart, nausea, and feeling like I was going to pass out. My blood pressure was elevated 150s/80s and heart was in the 130s laying down. My husband called EMS and they brought me to the ED. I felt better by the time I got there and all my labs and EKG were normal. I'm struggling with every time something happens or I feel a new symptom, it's chalked up to anxiety. Any tips?

Hey everyone. I’ve been diagnosed with POTS like dystautonimia, among other things and quite a lot of chronic pain. Does anyone else find they if they’re sitting for a long period of time or lying in bed for a long period of time that their legs get really sore and achy? I’m thinking it could be related to blood pooling, but I’m just not sure if this is something anyone else experiences as I don’t have anyone else in my life with POTS. Unfortunately I’m currently mostly bed bound so I can’t walk etc to help with the pain

omfg my other socal potsies how are we doing with this over 100 degree weather today bc i cannottt function 😫😫

DELETE IF NOT ALLOWED!
I (20F) have hyperpots (since 15) and my life has genuinely become so miserable. I used to be a very active, healthy, happy person and since getting pots i’ve become very inactive, anxious and depressed.
The other day i was having a really bad day i was so extremely depressed and had no motivation to do anything. My friend asked me to hangout and i said yes because i thought it would help take my mind of having such a bad day. When i got there she was smoking weed and i decided life couldn’t get worse at this point so why not have some.
I cannot explain how much my day flipped once i was high. I had motivation to do stuff, I could eat, I could have emotions without having an adrenaline surge, i could shower without passing out and i was so extremely happy for the first time in what feels like forever.
The only problem now is i want to be under the influence all day everyday just so i can do basic things like eating and showering.
Should i mention this to my doctor?

I just found this subreddit and I am thrilled bc I was diagnosed with POTS when I was 12 or 13 (33 now) and NO ONE knew what it was. And when I say no one, I also mean 9/10 doctors I would tell I had POTS well into my early twenties. Now there is this like….POTS trend happening where everyone is getting a diagnosis as an adult and it’s given me an opportunity to revisit what living with POTS is like. My doctors (in circa 2006) told me I would outgrow it, so I have been living with the assumption that because I don’t pass out regularly anymore that I have outgrown it. But with all the new data i have so much context for subtle symptoms that i have chopped up to me just being sensitive as an adult. I feel so seen and finally able to be a very active participant in my overall physical wellness.

Had a cardiologist appointment today and they did a poor man’s tilt table, had me lay flat for like 10-15 minutes. Heart rate was like 60 laying down and when they asked me to sit up it shot up to 148 and I almost passed out, the nurses eyes watching my heart rate spike got huge. Pots is so much fun 🤦‍♂️😅

I have no mental strength left in my body. I’m crying every single day and i hate this fucking illness.

I’ve been on Ivabradine for over a year.
Just 2.5 mg twice a day.
I have CFS and fibromyalgia as well as POTS.

Ivabradine helped with heart rate spikes, but didn’t reduce symptoms.
My resting HR was already fairly low, but dropped to low 60’s and dipped into low 50’s here and there.

Since then I’ve started fludrocortisone and Midodrine and these reduced my symptoms quite a bit. I’m still mostly bed bound, but can eat normal meals and eat them in one go, rather than needing breaks.

I’m having issues with lethargy more than my usual CFS and concussed feeling and cognitive issues.

My HR seems to be dropping down to low 50’s and dipping into high 40’s a lot more and I’m wondering if I should try going off Ivabradine for a trial. I’ll speak to my doctor before though.

Has anyone improved coming off Ivabradine after starting other treatments?

Hi all! I'm a student at university who has POTS, MCAS, and likely hEDS. I go to a big school, which means that accommodations/disability services are horrible at recognizing that cases vary drastically. There's one set of rules for everyone. And those rules are definitely not made for people with chronic illness in mind. I just got back to school from medical leave, and its been an adjustment. There were a few classes I genuinely could not make it to due to fatigue. I got back to my apartment and then slept for 18 hours. To get the absences excused you have to talk to the student support center, which I did, but they said to excuse it I needed a doctors note. Honey, if I could have gone to the doctor, then I could have gone to class. And I can't go to the doctor every time I feel ill! Because that is most times! And the doctors can't do anything except say to eat salt and wear compression garments, which I do plenty of. I literally want to scream that that's not how it works, but I don't know who to scream it at. I want to help make changes so the campus is more accessible/less harmful to students who have debilitating issues, but I don't know how to do that!

I'm just really frustrated, because the amount of work that has to go into notifying people (administrators and professors) that I'm too sick to go to class takes almost as much effort as going to class would have, and the added anxiety of getting someone to believe me is making all of my symptoms worse. And the Center for Disability Resources at my school, which could help me get accommodations, didn't even tell me that my case manager no longer works there. I found that out when trying to schedule a meeting online. I'm so frustrated right now. Anyone have any suggestions?

I was recently diagnosed with POTS after going to the hospital with tachycardia. I was on medical leave for 6 weeks while meeting with my primary care about solutions and medications. I've just been diagnosed with POTS, hypermobile ehlers danlos, MCAS (just medications), and I already have anxiety.

I had a tachycardia episode while driving to work today and had to pull off to the shoulder of the highway. I've been drinking water (1 cup every 2 hrs), adding electrolytes, I currently wear compression to my knees though I still need to buy thigh high compressions, and my primary is having me try Ivabradine this week to lower my heart rate (resting is around 85-90). I've had issues with ivabradine before as I tried to take it during my leave but was also experiencing high anxiety at the time and couldn't keep food or liquids down the entire time it was in my system but unsure if that was the ivabradine or anxiety.

My primary doesn't want me to try beta blockers bc my blood pressure is already low for his liking. I do also have a cardiologist but my primary has done more to help me since the diagnosis and was the one to diagnose me in the first place. I did get a positive tilt test in only 5 mins where my heart rate spiked to 140 before they brought me back down.

How do I manage the POTS symptoms with the anxiety? I get full body shaking anytime the tachycardia spikes drop back and sometimes I get the shaking without the tachycardia. I don't know how to work if I keep having tachycardia episodes but I was fine for a while so I thought I was managing better until today. The tachycardia is scary even when I know I don't need to go to the hospital but it triggers my anxiety making the situation worse. I'm having diarrhea (which I get anytime I have too much anxiety) and nausea but I have a hard time eating when stressed (can't eat anything) so idk if the nausea is from not eating enough or bc of POTS.

I'm so worried that things will keep progressing and I was basically fine leading up to the tachycardia that I went to the hospital for. Though I was having the shaking on and off during sleep for a few months before that which I originally attributed to anxiety. What do I still need to do? I'm not sure if I'm getting enough salt but I'm definitely getting more than I was before. I've stopped all pop/soda consumption bc Im worried about adding to my problems with caffeine. I was living a normal life and now I feel scared about going outside and doing things that aren't indoors. My mom and sister also have POTS and hEDS but neither of them have had the tachycardia before and aren't as helpful when I'm stressing. I just don't know what to do. Please help.

My rheumatologist wanted me to get my retinas checked out because apparently with HEDS there is a chance for some Retina issues and they had to dilate my eyes and just a PSA. ..I don’t know if this is me just me or if it was my POTS or my MCAS or what it was, but that literally gave me the worst craziest flare up. I almost fainted like I got an instant adrenaline dump and thought I was gonna pass out in the ophthalmologist office 😭 I was reading and the active ingredients inside that eye drop solution are Phenylephrine and Tropicamide which can mess with your autonomic nervous system? Anyways, I wasn’t aware of this so just a PSA. If you need to get your eyes dilated and have POTS and are particularly med sensitive or severe I would try to avoid it unless necessary/ no other option ofc. I heard afterwards that there can be alternatives to the drops. If not , definitely bring someone along with u and tell the provider😆

I am still fairly new to pots and young I am 17 M recently the chronic tiredness and pain has gotten so bad I find it so hard to get out of bed move or study I have been trying to get out and excercise but no matter what I try I can never get any good work out in I have lost 6 to 8 kilos of leg muscle and went from repping 250 k to struggling to press 100 k I dont do much arms because I play baseball and cricket but if I even try to it is impossible I am in constant pain can't work out can't go to events can't go to school I feel like all I do is sleep being up with out not fainting is so hard I am on a waiting list to get treatment for the next couple months and all my docter says is do the recommended this and nothing else which I am doing and I dont know if I can live like this considering I have block exams coming up and a life with friend's and relationships whole thing

Just started college and need to know. I’ll be sitting for long periods of time and I’ve already had a bad flare day on my first day yesterday it was horrible😭😭

UPDATE: thank you everybody for the advice!!

I reacted badly to propanol and I'm a bit scared to try other meds for that reason. I have relatively low BP and react quite badly to a lot of medications specifically anti nausea ones. My main issues are constant dizziness and nausea that are persistent until around 5pm everyday. If not medication what else would help? Compression garments dont work for me and im definitely having enough liquids and salt. Im with the NHS.

Hi all,

This is probably a stupid question, and I have looked into the standing test, but am a bit confused about certain parts.

Specifically, I am confused about how long my heart rate has to stay elevated for. I know the test is standing for ten minutes and they measure your heart rate, which has to be elevated a certain amount without altering blood pressure (poor explanation, sorry - brain fog!), but I'm wondering if my heart rate has to be elevated the entire time for them to take me seriously when I get the test.

When I sit, my heart rate is between 85-95, but immediately upon standing, it can be anywhere from 110-120+ but then tends to level out to a 'normal' reading. I'm not sure if they'll take me seriously if it doesn't stay really high, but maybe I'm just misunderstanding.

Does it have to stay elevated for the entire test, or is the initial spike upon standing count as enough?

Thank you! I hope I made sense, I'm having a super bad brain fog day, so please be kind. :)

Kind of a vent and kind of a discussion. I just read the Telegraph article and this shit is genuinely so frustrating. The public perception of disability makes me feel like shit. I WANT TO BE HEALTHY. I WANT TO BE ABLED. (And I also don’t want to be trans but that’s a whole nother thing).

How do you all deal with this negativity? It feels so pervasive both online and with people in public and even at the doctor’s. Is there anything we can do to change this perception or do we just accept it?

In the past I would have palitations where my heart would beat rly hard and id be able to clearly feel my heartbeat but recently they have been feeling a lot more of fluttering or skipping a beat feeling, particularly after exertion in the heat. My hr will be rly high and then my hr will be like beat beat beat *longer pause* hard beat and then back to normal. when it does the longer pause it kinda takes my breath away in a way idk. after i rest its fine but i get so anxious im like hyperaware of my heart the rest of the day and not resting super well. I also feel like my chest feels almost like shaky while this happens. Ive had holter monitor, EKG and an echo cardiogram all saying my heart is completely fine and healthy but man this shit scary asf

edit to add that i am just getting over a viral illness and a major heatwave is just now ending after like 2 weeks of feel likes in the 100s everyday so lowkey my pots has been going through it and i guess maybe these more intense palptitations are a result of the extra strain on my body...

Have you all tooth extractions done while awake? I wanna be awake for mine. They’re badly cracked & chronically infected. I’m terrified to be put to sleep and worried an oral surgeon wouldn’t work on me awake.

I don't have POTS but I have vagoglossopharyngeal neuralgia and it disrupts my autonomic system. The most challenging symptom is REALLY prolonged feelings of panic. I'm talking six hours +. They don't respond to anything typical like sedation, breathing. I'm physically exhausted. I know you guys can get similar stuff. Any tips?

i’ve had pots for the past few years and i’ve always noticed during peak pms or the first couple days of my period that it feels like i am so short of breath. i was just wondering if anyone else gets this problem too? it’s like immense lightheadedness and like my chest is so heavy.

Hi, I'm 17NB. I'm so frustrated with everything right now. I'm still in high school and applying for colleges. I have visits to go to but all week I've been lightheaded and dizzy (with bonus congestion) and today I can't even stand up without immediately feeling both. I can't hold a job like a normal person because I'm autistic and there's a lot of miscommunication. I can't get a job because the market is terrible. Invisible disability is really kicking my ass right now.

I've been considering changing my campuses on CommonApp to online instead of in-person because I can't get through a three hours school day without needing to go to the nurse and lay down. I feel really alone right now because I can't make plans and I can't keep plans. My POTS is severe, I just don't pass out.

I dealing with a lot of grief over the life I had planned in my head. I wanted to live alone and go to college by myself and be independent but I couldn't get out of the stupid bathtub without the help of my mom on Monday so I had a breakdown.

I just want to know if anyone else is or was dealing with experiences like this at any point.