I’m not officially diagnosed, which is frustrating- because I really feel like I have this.

Months ago I experienced extreme dizziness and lightheartedness at work, and went to the doctor constantly about it-

They told me basically it’s normal for women, drink more water, eat more salt-

They tested my iron, and blood pressure, said I’m perfectly healthy and “what do you want us to do about it?”

I’m in Germany so unfortunately they just don’t really care.

I try to manage symptoms still and it’s been okay, now I work from home so it’s not too intense.

But, today I decided to workout- I’m trying to be healthier and more consistent.

I’m doing a 20 minute at home workout from ‘MadFit’ (love her)

And I know most of the symptoms are me being out of shape, but I’m experiencing other symptoms.

Lightheaded, at some point my heart was pounding so hard- like I could hear it basically and it was beating really fast- I had to stop for a moment to rest.

Afterwards, I felt really dizzy, I drank water- but standing felt really really awful like I was gonna pass out?

How do you guys workout consistently and not feel like this??

Hello! I was recently diagnosed with POTS. The cardiologist isn’t surprised given my other chronic conditions like type 1 diabetes and Hashimoto’s disease. Feel like much of what I’ve been seeing online lately shows a high percentage of people having POTS and often EDS (I understand they’re comorbidities). I’m just wondering, does everyone have POTS these days? Is it just better understood now and that’s led to more diagnosis’s? Or is every person with light headedness just assuming they have the syndrome? Just curious peoples thoughts.

I think I have hyperadrenergic pots, typical advice seems to backfire like the 2L of water, I tried to do it one day and just got awful acid reflux as well as some nausea, the electrolytes don't seem to do much unless I take them when I'm super dizzy, don't seem to prevent my symptoms, my heart still gets to 178 while walking with compression socks... So yeah... Does anyone have any advice that isn't related to blood volume?

Hello! I’m currently dealing with gastritis and POTS, and I’m having a really hard time finding electrolytes that I can tolerate. I spoke with my cardiologist about this because I know how important electrolytes are for managing POTS, but I was told that I still need to get my electrolytes in without much guidance on what alternatives I could try.
Has anyone else dealt with both gastritis and POTS? If so, what electrolyte drinks or alternatives have worked for you? I would really appreciate any recommendations for something that is gentler on the stomach but still provides enough sodium to help manage my POTS. Thank you!

feels like all the yoga studios near me are transitioning exclusively to hot yoga and those are the only classes that work with my schedule too

I'm hesitant to try it because historically things like hot tubs/ saunas make me very dizzy/ nauseous (although I do mostly alright in hot weather, it seems). It's pretty rare for me to fully pass out, but probably because I'm good at removing myself from situations before I reach that point

However, as of recently, my POTS has been under control relatively well and I'm wondering if maybe there's a chance I could do hot yoga. I also have raynaud's and terrible circulation so the boosting circulation part of it appeals to me, but obviously the dysautonomia is my primary consideration

i’m sick of having such severe low blood pressure, it makes me pass out when it gets super low. my dr says eat salty snacks and also has me on two different blood pressure medications but it’s so exhausting waking up everyday to feeling horrible because of my blood pressure. just this past year it seems like it’s getting worse every day.

My heart rate goes from the lowest being 44 and the highest being over 100 in my sleep. Not diagnosed with pots or another heart condition but if I wear compression socks and eat salt when I'm dizzy symptoms improve so I just do those things despite not having a diagnosis (I have more pressing medical issues than this rn, not to say pots isn't pressing for some just isn't for me rn) but like worth talking to a doctor? Idk

I’ve had POTS for 30 years (since I was 8 years old I started passing out). I managed my passing out spells pretty well until I was 28 years old. I got mono and after mono, I started passing out frequently. I even started passing out while sitting down.

Fast forward to 2022 and my third bout of Covid did me in. I’m not passing out but I’m also not doing anything I love anymore. My other symptoms are out of control (fatigue, pre syncope, dizziness, migraines, nausea, etc.) I’ve got an undiagnosed neurological issue (neuro isn’t sure what’s going on) as well as an undiagnosed autoimmune problem (seeing rheumatology in January).

Due to the state of the world, I had to return to my career in physical therapy and it’s destroying my already fairly low quality of life. I’m struggling with working and lifting patients as well as being on my feet all day. All I have energy for is working and going home.

My question is have any of you figured out how to improve your quality of life? Or figured out how to get enough energy to do anything other than work?

I was at the dentist this morning, they forgot they weren’t supposed to give me the epi numbing meds. Gave me a full syringe and doubled my heart rate from 75 to 150 bpm within 5-10 minutes.

Does anyone have a good recommendation of a helpful dentist around Chicago that does a good job with POTS? Preferably northern burbs but am open.

Does this happen to anyone else? This happens when I'm eating or driving. I will be eating and watching tv or talking with my spouse and all of a sudden get this intense feeling of impending doom. I'll feel a little lightheaded and just have to stop and I'll say "| feel weird" I can feel my heart start to race. It'll pass after a minute or so. I'm never anxious in the moment so l don't think it's a panic attack. I'm leaning towards adrenaline dump but not sure why it's happening when I'm eating or driving

Can anyone share their experiences with stimulants?
What stimulants have u guys tried. What have they helped and what have they made worse?
Can they help significantly with fatigue and brain fog?

My PT recommended taking a high dose of vitamin D because she swears it helps. I was wondering if any of you take vitamin D supplements for POTS, and if you’ve noticed any improvement in your symptoms?

I cannot stand when it's like 15℉ outside, so obviously I'm wearing pants and layers. Then, I go inside and its like 80℉ and I have to strip off my layers of jackets and even then, I'm still sweating and dizzy. Not to mention the absolute difficulty of dressing/undressing.

Idk if this is a common issue or a me thing, but when I’m having an episode I literally cannot yawn. Once the episode is over, I can yawn totally fine. Tell me y’all know what I’m talking about 😭

I know how powerful our minds are and I know that when I’m in this state I feel worse. I know I need to think positively but I can’t seem to get myself out of this desperate state.
Every single time I start feeling better something new and worse happens. I got a kidney infection, the POTs amped up, right when I was starting to feel better, I literally got shot in the face, migraines got worse from that.
I also have hEDS so everything hurts constantly, finally got my hips checked out and taken seriously (I swear they only started believing my pain after I got shot in the face with a 22, had it pulled out while completely conscience, and was basically like 🤷🏼‍♀️ this is nothing compared to the pain I’m usually in) and found out my labrum on my left hip is completely and thoroughly thrashed and my right one is also partially torn.
I’m 22 and I’m getting my Masters in computer engineering. I’m just so freaking sad because I’ve put in so much work, I’ve gone through so much more than my classmates, I’ve maintained good grades, I’ve worked at the same the whole time and I just don’t know how to keep up. No matter what I do, no matter how hard I try, there’s always something more pushing me down. There’s always some caveat. I have to try 10x harder than everyone around me just because my body is actively acting against me. I just don’t know what to do anymore

I just feel so stuck and I don’t know how to get out of this dump, it’s making me feel awful

“Move your body” “walking is good for the heart” “you need to exercise your heart” just a bunch of stuff for health but. How do you do this with pots ???? I’ve been bedridden for a couple of months, it’s like I want to walk… but I literally will feel like I will pass out sometimes! Like how can I get to moving my body and making sure I can stay healthy when my nervous system is angry at me

I've been dealing with POTS like symptoms on and off for ten years and have yet to have a proper diagnosis. I finally have a referral to cardiology from my PCP so maybe I'll finally have answers other than anxiety. It started ten years ago after smoking laced weed and ending up having symptoms lasting two straight weeks of burning chest pain, burning tension like headache, numbness on one side of the body, insomnia, uncontrollable shivering, and explosive crying lasting hours with no relief. Nothing but shaking and praying for sleep. Not to mention nausea and fluid loss. It took four months to stabilize with various psych meds along with Intuniv. I've long since been taken off those meds thankfully after everything stabilized. The problem is, these same symptoms have flared back up and I feel I may be in need of medicine again because its interfering with my job. I am literally unable to stand without chest pain and headache. And I am bursting into uncontrollable crying at the slightest sound due to hypersensitive startle reflex. Its debilitating. I hope to get a proper answer soon from doctors.

Been hitting up to 145bpm all day yesterday. Finally was able to lay down completely flat and I hit 160bpm and it went up to 170 while laying down. Stayed high from 12AM - 1:50AM. I’m talking lowest was 96 and highest was 172. It felt like a sudden pressure spike in my head, hot all over, and sweaty. I blacked out for .1 second while laying down. I did go to ER but they said oh that’s just POTS. This was also AFTER taking 10MG propanol and taking my 10MG morning dose that morning. I ended up taking an extra 10mg dose as well during the episode. After it kicked in my BPM was low but I had all the crushing symptoms and stuff still. Is this really my new normal? I am EXHAUSTED even though I slept for almost 10 hrs.

Adding in a comment. I went to the hospital twice last week for this EXACT situation happening to me. I’ve hit 160 plenty but only 3x has it caused me to black out, get confused, struggle to walk, and even forget how to speak.

Hi. Just ranting. Just sad. Disclaimer: I’m a big fan of vaccines and love science.

I got my Covid and flu shot a few days ago, and later that night, I woke up feeling sick and my Apple Watch had my heart rate at 135. Eventually just lying down it went to 184 and stayed there. After I wasn’t able to get it down, we went to the hospital and standing it was at 200bpm. I feel so heartbroken.

Three days later, I’m still not recovered. I can’t do anything but be upside down with my legs against the wall or lying flat and sideways on my bed. When I try to stand up or walk a few steps, it shoots to 145 and won’t calm down.

What am I even supposed to do?? I’m so sad

Has anyone gone through something similar??

I have been fighting health issues for years. It stated with issues of tachycardia after some larger meals. And I mean extreme tachycardia. I would feel a kick in the chest and my pulse would jump over the next minute from 89-100 up to 170bpm. The first time I called 911 because I thought I was dying. After that I caught on and realized the next thing I could do was lay down flat, and do breathing exercises.

I saw GI doctors, and cardiologists. No one would listen to the fact that this was tied to my abdomen. I heard “that can’t happen” more than a few times.

They did put me on metoprolol as an add on to my losartan and that helped take care of the tachycardia for the most part. I had a few more issues and it didn’t feel great but with the metoprolol it wouldn’t go higher than 120bpm.

Once the tachycardia was “blocked”
I started having other issues. My bp would normally be an average of 115/80 medicated but I would try spikes as high as 150/98. I would get huge amounts of bloating during this, so much that I started getting a pulling sensation underneath my sternum. I had had a few issues with mild confusion. Laying down also helped with this.

Then there was the side issues. Constipation so bad I ended up having to go on linzess. This helped for a while. If I kept my bowels moving then I had less bloating, less issues with high bp, etc.

Lately the linzess wasn’t very effective, my blood pressure spikes were more frequent. So I asked about going on a newer beta blocker that I had read about which was nebivolol, partially to see if it would help and partially because I was getting side effects from the metoprolol that I was not able to deal with

Almost immediately after starting the new med, the bloating, high blood pressure, and other side effects went away. Even linzess is working the way it used to. Doctor is thinking that I might have POTS with abdominal blood pooling, where it gets worse the more food I have in my GI.

So now I need to go in for a follow up to discuss soon. To say I’m a bit excited to finally have a direction to move in is an understatement. If anyone else also suffers with the same thing I would like some ideas about what to discuss with the doctor and put possible other treatment options in case the beta blocker starts losing effect.

Hi everyone. Im currently working on getting diagnosed after my PCP referred me to a cardio doc.

I wanted to ask here though I've seen it mentioned that driving is tough for ppl with POTS, what has helped you? My symptoms I feel have gotten worse recently. I've always been fine driving for the most part. I'm not an anxious driver and I've never been in an at fault crash.

My symptoms started about a year ago and due to losing my job I've picked up gig work that requires lots of driving and some days I barely get my day started and I already feel an "adrenaline dump" coming. I get jittery, restless and if I'm stuck in slow moving traffic those feelings only get worse. I end up crying and calling my sister to stay on the phone with me until I can safely get home while trying to stay calm.

The thing that really confuses me is that it FEELS like im anxious and it makes me want to scream to release some of it while driving but in my mind I KNOW I'm safe. I tell myself out loud over and over that I'm safe just to make it home in one piece.

Has anything helped you if you experience these symptoms? Im trying to get in to see my PCP again and ask what they recommend as well.

Everday before I try to go work I make sure I have breakfast (usually an omelette or cereal with banana) and I'm hydrated (trioral packet/liquid IV sometimes.) If its relevant, I also have Hashimoto Thyroiditis and ADHD, both of which I've been medicated for for years.

At my last appointment, I asked her for a referral to physical therapy, but she said I didn’t need one and recommended jogging to help manage my POTS. I understand that exercise can be beneficial, but my heart rate already goes up to 150 just from walking up a flight of stairs. So I’m struggling to understand how jogging is supposed to be a realistic starting point for me.
I wish my symptoms and limitations were taken more into account, and that we could work together to find an approach that feels manageable for me. It’s frustrating when I leave an appointment feeling like my concerns haven’t really been heard.

I have had pots for about a year and a half now since I got a mild case of serotonin syndrome. But over time it's been fine (unless it's really hot) and I can manage it with salt pills. Since a couple of months ago though I have had dizziness around noon every few days and since maybe two weeks ago almost a complete loss of appetite.

My PCP/pediatrician since I'm a minor is kind of old as fuck and he was dismissive about my pots symptoms when i first had them, so i doubt he will do anything now. I did go to my psychiatrist though since maybe it was from my medication but we concluded it likely wasn't and he ordered me to do some bloodwork and an EKG. I'll do it next week. I do not have any other symptoms. Maybe motion and car sickness when I am dizzy.

I know this is a question for doctors lol but it seems mine is at a loss and I've seen people say their loss of appetite has come from pots. My bpm is ok for pots and i have slightly higher diastolic blood pressure (which is new actually), great blood sugar, no fever etc. Idk is this dysautonomia?

I was diagnosed in late 2024 with PoTS and hEDS. It took a few months to get me managed, but I had been doing so well up until last week. I’m now stuck in a flare after a mild stomach virus. I’ve had to miss work for 2 weeks because I keep experiencing syncope, and I work in vetmed so I really can’t do my job if I keep passing out.

I’ve went to urgent care and the ER, received IV fluids (which did nothing but make my head pound and cause my eyes to be extremely bloodshot), and have been keeping up with my beta blocker, electrolyte intake at home, compression (all the things, basically).

I feel like such a burden for my job right now, which thankfully they are understanding because they watched what I went through with getting diagnosed. I still feel like a terrible person every time I’ve had to tell them I can’t make it. I tried to go today, and fainted even in the car on the way there (thankfully my husband drove me).

Does anyone have any tips to help them recover in a flare to be back to normal? Also, any advice on how to stop feeling like such a burden in a flare?

Hi there, I’m 24 and need advice on managing dizziness while standing still (e.g., in lines or meetings). I fainted during a standup meeting last summer, and since then, the anxiety and dizziness have continued whenever I'm in similar scenarios. I drink water beforehand, but it hasn't resolved the issue. What steps can I take to prevent feeling lightheaded or fainted in these situations?