If you’ve been on propranolol, what was your experience with it?

I’ve just been given a prescription for it.

As soon as I drink water when I have woken up it triggers adrenaline. So tired of this crap. Wtf.

I was diagnosed yesterday with pots and I’m waiting on the results for my Ehlers Danlos test.

I’m very happy I was diagnosed as it explains a lot.

My question is, what are we doing for what I can only explain as body anxiety. Where your heart races and your body feels like it’s in fight or flight?

I don’t want to go on beta blockers as I’ve had a bad experience. I’m thinking things like cold plunges and acupuncture are a must for me because that’s helped when I’ve felt like this in the past. But now that I know what it is, what are we doing that actually works?

Hello everybody I have pots and Health anxiety. I have an up coming trip to New York from Europe. I have very but insomnia when I travel and for this I got prescribed temazepam. I am always very scared to take any new medications previously I’ve used oxazepam and that worked quite well for me. I’m scared to take this sleeping medication because I’m always very scared when I have presyncope episodes usually I don’t faint. I just have a very bad presyncope with my pots and an unreal feeling. My anxiety for my upcoming trip is very bad as well, and I’m actually not excited to go that far from home in a country that is unknown. I’ve been having a flareup since April and I don’t know how to make it better.

Thank you in advance ! 🫶🏻

My life is falling apart. Honestly. There is no other way to describe it. And it's breaking me down to my very core.
6 months ago I got sick. Normal cold. Nothing wierd. Then I started getting these symptoms... 2 months after that I got another infection and boom. Severe POTS. I got fired and lost my dream job against discrimination laws but I was to broke and sick to go to court.

I lost my health, my ability to function, take care of myself, remember simple things and my body hurts so bad. I get exhausted by everything and stress kills me for days.

I got a specialist in april and was so happy as I'd her so much good things about her. But afterwards I've learned that she just made me sicker by making the wrong calls. And now I have to keep rebuilding myself from an even lower baseline which just feels like the weight
on the world on my shoulders. And I don't even know if I will ever be healthy again.

But this last three weeks... It's been absolutely killing me.

First we had a heatwave and my heat intolerance threw me into a horrible flare. My mom chose going to a concert over helping me while I laid in bed alone in my apartment in agony. My boyfriend was at work. He had to, I asked him to go. We are in bad debt because I got sick.

And then the great job my boyfriend got that was finally help fooled him. They lied and withheld information from him to make him quit his old job and take it because they had a staff emergency. So now he works a horrible schedule that is killing us both while he is looking for a new job. He can't quit until he found something new because we can't afford it. It feels like a prison.

Then something else happened with my family that sadly forced me to break contact with them for a while. So my biggest safety net while he was at work disappeared. But I had to and it hurts so bad.

And right before this happened my mom gave me the wrong medication by mistake and instead gave me one that was dangerous for me and I had to spend hours in a hospital and felt like shit for days afterwards.

And my bad neck got a thousand times worse and medical information even had to call an ambulance to check on me so I was in horrible pain for weeks without even being able to sit up most days. And the neck pain made my POTS a thousand times worse.

And when I finally got the call that I was gonna get a physical therapist for my neck after weeks of agony and that I got an appointment in just a few days I said right out "It feels like some good things are finally happening in my life again" AND LITERALLY less than 30 seconds later we heard our cat scream in agony and he got really really sick from out of nowhere so we had to take him to the vet in an emergency which cost us hundreds of euros while we are already broke. And it also broke me to see my baby hurt.

And today. I had a call with my doctor about my sick leave so I can have my small "paycheck". Which just about covers rent and a few of our bills. I missed calling with 10 days. And because of that they refused to do it and said they could only do one from today and start over. I told them about how sick I've been the last month and the horrible memory loss I suffer because of my illness that is also documented in my charts. But they refused to listen. And now I get no money for two months. Because thats how long a new "investigation" into sick leave takes over here. And In the end I lost hundreds of euros because of the 10 days that I will not get back. So this month we are not even sure if we have enough money for food.

I feel like I'm dying. All I do is cry nowadays. I see no sunlight. I don't know what to do.

Hello! I had my appendix and gallbladder removed last Thursday because I had an over reactive gallbladder. But I also have severe pots. I’ve been bed bound for a little over six months and just feel crappy. I’m on ivabradine and fludocortisone and midodrine. I’ve been feeling very out of it and dizzy more than usual but blamed it on just the hydrocodone the doctors gave me, but it’s been two days and I’m still feeling out of it. Almost like I’m falling, and trying to catch onto something. My nervous system is so messed up if someone talks to me I start getting nervous. Tremors are just terrible, and no it’s not my blood pressure because it was 112/70 which is really good for me since mine drops out. If anyone has went through this please comment!

hey y’all! honestly just looking for some answers and want to see if anyone else is dealing with this.

i have very bad episodes of what has seemed like low blood sugar. shaking, nausea, weakness, etc. while i have had these my whole life they have seem to have gotten worse recently and especially since my POTS diagnosis. my dr was concerned and had me wear a cgm and do finger pricks. usually when symptomatic i’m somewhere in the (usually low) 70s, rarely high 60s. with the cgm, it was constantly telling me i was low, waking me up in the night, etc. this was more pronounced with the dexcom than the libre, i tried both. after all this, i talked to my doctor and she said not to worry and to just eat 6 meals a day but i feel concerned still and would like any input from others!

Does anyone else have low platelets with their pots? I'm wondering if there's a connection...

I know this has been asked before but i just had a bad episode of presynscope due to a heatwave where I live and my A/C deciding to malfunction. 🫠

Its a bit better now, put cold water on me, fan, electrolyte water, ginger for nausea.

Any other tips? I get really anxious whenever I have presynscope. :(

Thank you.

Man, it’s been a few months since I’ve had a real proper surge and this one scared me quite a bit.

I felt it coming on as the sensation started to rise in my body. I took a couple swigs of orange juice, water, and electrolytes but it kept building.

Then I literally felt my heart go quiet and then BOOM. It’s show time.

Visibly shaking, panicking, sweating. I thought I was dying even though I’ve felt this before. It’s so freaking scary. My coworker notices and I say that I need to lay down.

45 mins later, the panic is gone but now I am FREEZING and shivering. It’s been over an hour now and I’m still so cold. The brain fog is setting in too. I’m slowly sipping on more water and electrolytes. I knew I shouldn’t have eaten that fucking bagel…

I have an hour long drive home. I hope I can make it…

I'm moving from the southeast US to a Colorado mountain town. I'm used to the humid and hot weather but going to colder weather and the extreme temperature fluctuations aren't something I'm experienced in.

The last time I experienced below freezing weather, I threw up after getting into a warm car and then house. I felt so awful and had never felt that bad before as my body tried so hard to regulate itself.

What are your cold weather tips, especially from those of you with Raynaud's?

So, I'm in a bit of a pickle.

I started a new job last month that is very physically demanding. At first I thought I could tough my way through it as I'm enjoying the work and company, but between the shift pattern changing from early morning starts one week to late afternoon starts the next (sleep pattern being affected, worsening POTS symptoms) to my POTS, EDS and now recently diagnosed plantar fasciitis, I am really struggling. My heart rate basically doesn't drop below 120 during the day, despite me doing my level best to manage my symptoms as much as I can. It gets to the weekend and I crash badly; I have spent all my time off essentially bed bound.

Initially, I asked about working part time but was told the company was only looking to hire full time, and I *desperately* needed the job so I took it. I'm 4 weeks into my 5 week training window, and I don't know how to go about asking for reducing my hours even by 1 day. I don't want to lose this job, it makes my ADHD brain happy, but I feel like I'm actually physically dying. I either need to reduce my working week by at least one day, or I physically burn out. Quitting isn't an option as I need the money.

Idk how to even go about doing this, I'm thinking of drafting a letter or email or *something* where I site my legal rights (UK), but I don't know how to even begin or whether this is the right approach.

I hate this so much.

So, the summer has started and as usual in the heat all of my symptoms are going crazy, however Im experiencing something odd?? The joints in my fingers (especially ring and pinky) have been aving and even hurting after a few minutes of homding mg phone. I never hold my phone with just my fingers, and usually hold it pressured between my palms insteag of the average 'Smarthphone pinky' pose.

Ive tried just not holding my phone as much as possible and it does help. But Im just very confused by this. Ive only been diagnosed with POTS, and havent looked at all into EDS, but I haven't really had much reason to suspect it.

If anyone has any idea or suggestion I would be so grateful bc Im truly about to quit holding my phone altogether

Please bear with me on this because I am desperate to find somebody who relates, as I have been dismissed every time I bring it up.

When I (AFAB) get turned on, I get increadibly nauseous. Hot flashes, a bit dizzy, but the nausea is the biggest thing. I've had to put down multiple romance novels because of how bad it gets, and it's not because I'm disgusted or asexual. I also have a problem where the day after sex, I get very depressed. Lack of energy, wondering why I exist, easy to upset/overstimulate. Both things have gotten worse as my POTS has.

Both things have made it hard to have normal relationships. I've brought it up to my gyno and primary, and both have just shrugged and said I'm probably just sensitive to the fluction in hormones(I also have PMDD). No solutions given, no further testing, just kinda dismissed like it's a quirk and not a life altering thing.

I don't know if it's a POTS thing, but at this point, I'm out of ideas of what else it could be. Does anybody else relate to this or know somebody who does? I just feel so alone with this.

I'm on vacation. I made dinner for my parents and sister, out of the kindness of my heart. I am now debilitated and can't even eat my own dinner because I am nauseous from being on my feet too long. That's the entire post. I do find this hilarious in some ways, I hope they enjoy dinner before I crash for the next day and a half. Wish I could too lol. I'll have reheated leftovers tomorrow. Currently having my father fetch my cane from downstairs so I can flop into bed asap. Genuinely cannot see my vision is tunneled so bad lol. Hope you all are having a better night than me. Remember your electrolytes. Love you <3

I was diagnosed with POTS and GERD in the emergency room 3 years ago. The doctor didn’t write it down and my Mom gaslit everyone into thinking that I was completely normal and healthy. My symptoms have been flaring up. I get nauseous easily, I keep fainting after getting up, I got random anxiety attacks when I was in Florida, I throw up stomach acid, and I sleep like 15 hours a day. There’s no food in the house, he acts like it’s a chore to buy me anything other than dinner. Breakfast and lunch items run out fast, and he blames it on me “eating too much” despite me losing over ten pounds in around two months. I’ve been trying to get a diagnosis again but none of the doctors believe me and swear on me getting an H.Pylori test or blaming it on my low iron. I’m tired.

I am newly diagnosed and waiting to see a cardiologist. I have noticed a wide range of these symptoms to some degree since I was a teenager and am now 36. I’ve told myself it’s all in my head - the anxiety and dizziness fatigue brain fog or just symptoms of generalized anxiety. The heart problems I thought were due to anxiety. The agitation and irritability were postpartum hormones and anxiety (probably a bit true but not to the degree I have been experiencing them). I’m trying to keep expectations realistic on what will improve if I can manage this but wanted to see what everyone’s experience has been?I know there is no “cure” but assuming somethings must get better? Because I have felt like garbage for a long time and it’s gotten significantly worse after my most recent baby and I’m feeling a little hopeful to have maybe found some answers but I don’t want to get my hopes up for nothing 😩also if anyone has experienced dry eyes along with this please share!! I’ve read that can be related and have had horrible issues with that the last few months. I’ve tried every form of treatment that exists and nothing helps!

For the past six months my POTs has been so bad that I've not been able to shower in the conventional way. My shower is old and couldn't support a chair (even just a cheap stool from amazon) so my shower was totally inaccessible to me. I've been stripwashing with fresh wipes and soapy rags, and washing my hair in the sink but hair in particular is a trigger (mine is really thick and takes ages to wash thoroughly) so I recently went three weeks without washing it because my symptoms were so bad.

Today I said fuck it, I'm having an okay symptoms day and I don't have plans for the rest of the week as my work is on break til August. So I got in that shower and did a full wash- three hair washes, 2 full body scrubs and a face wash. I had to come out and take a breather half way through, the water was tepid as I could make it and I feel like I've run a marathon now- but I fucking did it. I'm clean.

POTs people, you get me. Thanks for letting me share this win. I hope you get some wins soon too.

My mom is desperate to find a “specialist” for me. I keep explaining it’s most likely a scam when it comes to these clinics that want a few thousand up front.

I have diagnosed POTs. My doctor gave me the option of Beta Blockers, but I wanted to try lifestyle changes first. I have gone without them for about a year but it’s starting to get worse with the heat and I’m debating going back to ask for them. BUT I’m so scared about the fatigue getting worse. How has or hasn’t your specific beta blocker affected your fatigue?

What do you do when you just keep burning out you take weeks sometimes months off only to come back and burn out the same all over again how do you finish your complete anything when you just keep burning out I’m genuinely asking cause I’m curious how you get through it

Haven't posted here in years. Last time I did I was constantly stressed and anxious about everything to do with my body. I developed an unhealthy addiction to monitoring my heart on my apple watch, with the paranoid fear that one day out of nowhere, my meds would simply stop working. Well not anymore.

I've accomplished great strides in the past year. I moved myself and my furniture out of my apartment and back home after college, no issue. I conquered a ludicrous hike called the "dragons back" up in mammoth mountain; 1.5 miles of switch backs, low oxygen, and generally low cardio training, but i did it. Now i'm back in the gym, hitting legs and arms, and slowly introducing cardio via bike machines and swimming. For once in the last 5 years of having pots, I feel good, and excited. I have energy for once, and I'm finally not worrying about my heart, or what foods i can eat to mitigate flairs. I feel i function like a "normal" person again, granted, I do take medication.

To be honest, I'm not really sure what changed... It's almost as if over the course of a couple months a year ago, my body just started adapting, like it understood my condition and is doing its best to function despite it. Maybe it's remission? Not sure, don't think so, cuz i still need my meds, or i'll feel terrible. Maybe age? I was formally diagnosed at 20, now i'm 24. Honestly no clue, But it's improvement, and i'm so happy to finally have some of that.

I'd say my biggest help has been ivabradine. My biggest issue wasn't my heart racing during exertion, but that it would continue to race, for hours and hours after the fact. Taking out the trash when i was at my worst, would result in a resting rate of 105+ bpm for atleast 3 hours. It was horrible, but ivabradine really got my heart beating steady.

I'm curious on other peoples' progress. Did you feel your symptoms get better with age? Did it just randomly get better?

Hope everyone here is finding their peace and improving, even in the smallest of ways.

Not sure about anyone else but a shower just is a monumental task for me. It will be the one thing I do that day and it really knocks me flat. As a result I usually rely on sink washing and wet wipes to clean and I just discovered that I can use my water flosser to wash my hair in my sink. I wet my hair with a spray bottle, lather the soap and then lean back over the sink to rinse off using the highest jet on the water flosser. It was a little messy but next time I will sit back and get help to do it so I’m not leaning over so much but it was ok.

Just wanted to share because I live somewhere where we don’t really have winter so it’s hot all the time and hair gets sweaty and oily quickly. It’s not nice having dirty hair and I know it’s summer in a lot of places.

This might be common knowledge or common sense to some, but be careful which cold and flu medication you take!! I just found out today that most OTC medication contains pseudoephedrine and/or phenylephrine which can greatly exacerbate symptoms. Obviously it's not the case for everyone but something to consider

I had no idea and only found out today after I've been taking them and have had a serious flare up which has made me feel even more ill.

Heres a source but there's lots of other info online:https://chronicallysalty.com/2018/06/12/got-a-cold-with-pots-5-tips-for-a-faster-recovery/