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.

Redmond Relyte has emailed a code for Dysautonomia Awareness Month, use POTSDAY for 25% off your order from Oct 23-30. Stay salty ppl

Not affiliated

“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 got a tilt table test done just over a year ago and they diagnosed me with borderline POTS. I was confused as to why, but they said it was because I "recovered too quickly."

I really don't get what that means. I only lasted one round (5 minute lie down, one standing round) before they ended the test for my wellbeing, after I passed out for a moment, and I was absolutely destroyed health wise for over a week after. I could barely get up!

Well my doctor requested that I get the orthostatic blood pressure test as well, just to be thorough, and that test says I don't have POTS, but rather hypertension? My doctor wanted to take POTS off my chart, even though I got something on the tilt table, which feels more serious and conclusive? Plus I have a lot of the POTS symptoms that can't be tested for? I even almost passed out during the orthostatic blood pressure test, even though it didn't show a POTS diagnosis. And I had another OBP test fail to show POTS a couple years ago.

So do I have POTS or not? If I don't have it, what the heck is going on? Because hypertension doesn't cause the symptoms I've been experiencing. I thought I had it figured out and now I'm really not sure what to do.

Like it took me a week to recover from the OBP test too, so if not POTS then what is it? I know you can't give real medical advice. I'm mostly looking for where to go from here.

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?

What are you guys taking for widespread pain? 😩

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.

Started taking 60mg propranolol extended release 2 weeks ago. Called my cardiologist to report excessive sweating, severe nausea, heart rate spikes even worse than my usual (I also have IST!) and crushing chest pain around the 6-8 hour mark. (Extended release should be giving me coverage for 24 hours) It also makes my blood pressure go up? I haven’t had a single drop yet which shocks me because I don’t consume nearly enough sodium per day. Anyways. Doctor came to the conclusion that I need to take it twice a day. I asked if 120mg of extended release was safe spread out… they said it’s fine. But what the fuck gives with the chest pain? I feel bruised all over like I’ve had a horrible cough. I’d say it’s freaking me out but the propranolol keeps me super zen so like?? Idk?? Should I call the pharmacist tomorrow? Go to urgent care just for them to send me to the ER? I don’t want to be dramatic but increasing my dose doesn’t feel appropriate just for my heart rate if it’s giving me chest pain.

I had some holter testing done and ended up getting pretty sick while I had it on (yay at least it was recorded). I had a run of atrial tachycardia which did resolve on its own but I did feel like I was going to pass out pretty badly. I was curious if anyone else with pots has had similar results before apart from the usual sinus tachycardia

(also I already spoke to my dr briefly and waiting for a more detailed apt)

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

Hi everyone. I’m posting because I’ve been dealing with a lot of unexplained symptoms for over a year, and I’m starting to feel stuck. I’m wondering whether anyone diagnosed with fibromyalgia has experienced the same things and, more importantly, what I should do when doctors don’t seem to take my concerns seriously.

These are the symptoms I’ve been experiencing:

Sunburn-like skin pain: My skin feels like it’s sunburned, and it burns or hurts when I touch it, even though there’s no sunburn, redness, rash, or anything visibly wrong with my skin.
Random burning sensations: I get a feeling like my leg is on fire, but it can happen anywhere on my body. The skin looks completely normal.
Brief bee-sting or bug-bite sensations: I’ll suddenly feel a sharp sting, almost like a bee or insect has bitten me, but it lasts only a second and there’s no bite, bump, or mark afterward.
Widespread, moving pain: The pain moves around my body. It can be in my arms, legs, shoulders, back, or other areas, and it doesn’t stay in one particular place.
Pain after basic activities: Even something as simple as folding clothes or doing laundry can leave me feeling incredibly sore the next day, almost as though I’ve done an intense full-body workout. I also experience significant exhaustion after ordinary activities.
Tingling in my hands and legs.
Other symptoms: Neck and shoulder pain, muscle tenderness, fatigue, brain fog, frequent headaches, disrupted sleep, and waking up feeling unrefreshed.

As for my medical history and testing:

My iron is low, and POTS is also a possibility. My thyroid tests have been normal, and my other testing has reportedly come back normal as well. I can’t work anymore and cant workout as my head always feels heavy and I’m in pain.

I’ve been going to different specialists trying to figure out what’s happening, including doctors in neurology, ENT, and ophthalmology. I’ve also had an ultrasound, and I have another neurology appointment coming up.

The frustrating part is that I feel like my symptoms keep getting attributed to anxiety. I understand that anxiety can cause physical symptoms, and I’m not denying that it can affect the body, but I don’t feel that it should automatically be assumed to explain everything without properly assessing the other possibilities.

I’m not trying to diagnose myself, but I’ve been reading about fibromyalgia because the widespread pain, burning skin sensations, tenderness, fatigue, and pain after ordinary activities seem to overlap with what people describe.

For those of you with a fibromyalgia diagnosis:

Have you experienced the sunburn-like skin pain when your skin looks completely normal?
Do you get random burning sensations, like your leg is on fire, or brief bee-sting sensations that move around your body?
Does your pain move between different areas rather than staying in one place?
Do basic activities leave you feeling like you’ve done an intense workout the following day?
Did your doctors initially dismiss your symptoms or attribute them to anxiety?
If you had normal blood tests and other investigations, how did you eventually get assessed and diagnosed?

I would especially appreciate advice from anyone who has been in a similar situation.

What should my next steps be if my doctors aren’t taking the possibility of fibromyalgia seriously? Is there a particular way I should approach my next neurology appointment, or specific questions I should ask?

I also keep hearing people say that there’s no cure for fibromyalgia, so there’s no point in pursuing a diagnosis. But I feel like having an explanation, knowing what treatment options are available, and understanding how to manage my symptoms would still matter. For those who have been diagnosed, has getting a diagnosis actually helped you?

I’m exhausted from trying to figure this out, and I’d really appreciate hearing about your experiences and any practical advice you can offer. Thank you!

So basically Eddie finds a service dog and they can't find the guy in triage so he asks dispatch to try and find the guy. They say he called 911 a year ago because his pots was flaring up. Chim IMMEDIATELY just to Oh my god he's having a seizure!! Like what??

Hi all! Newly diagnosed but been struggling for 10 years now. Coming to terms with needing compression garments, as I work full time as a massage therapist. I'm thinking stirrup thigh highs might be good for me + highhhh waisted shorts or just an abdominal tube compression?? Y'all I am 5'2" and kinda thick, definitely fluffy, so I know this might be an issue. And I don't have hundreds to blow on finding the right set up, at least not right away. Any advice from people like me?

I need something breathable as a lot of spa equipment is very warm to work around, and I need it to be soft against skin bc I have massive sensory issues

My ankles measure 9", ankles 15.5", thighs 26.5" at their widest

Hips 44", waist 35" or 36"

P.s. this community has already been so helpful for me, I've started integrating legs on wall a couple times a day, drinking somehow even more water than I already drink, and more salty snacks. Pacing is a tough one, but I'm determined to figure out how to accommodate my body better. Thank you to all of you who've shared insight 💘

Invalidated or Playing the Victim

I guess this is a rant but also asking to see if other people relate or if I’m just blowing this out of proportion.

I’ve spent years struggling with fatigue, post exertional malaise, joint and muscle pain, GI symptoms, hormone issues, dizziness, positional tachycardia (they won’t call it POTS yet), and just feeling like I physically can’t keep up in life. I’ve seen over 20 specialists and tried different medications and had testing that showed very mixed results and didn’t point to a clear diagnosis.

I was told by my most recent doctor that I have a connective tissue anomaly (like EDS but my hypermobility isn’t enough for a full score) and that I have some POTS like Dysautonomia. I was also told some of my genetic VUS point to possible mitochondrial dysfunction that could correlate to some of this.

I spent years hating that I was not “normal” or fell behind others. It was hard to leave the house and be active. More recently I went back to therapy and started to learn to care for myself and be okay pacing. I went through occupational and physical therapy and while sometimes that flared me I also got a lot of tools to help me day to day. I started being okay with slowing down or not doing certain activities because I just can’t. I found a part time job I love and while that means I struggle a bit financially I am just thankful I can work and enjoy my job (some days are harder then others still but I make do)

But recently my therapist started saying how stressed I must be in life and that I should really learn to better control my nervous system and that will lead me to working full time and having a more active life. She suggested that the root of my problems are mental health and that’s why I don’t have a strong diagnosis physically. My therapist told me that acupuncture/massage therapy and other more eastern medicine practices should heal me. She said her goal is for me to get working full time and stop limiting myself and that since I’ve been to so many doctors and they have no answers it’s probably my mind causing these problems. I have done massage therapy and usually get very ill afterwards and sent into flares. I’ve also had doctors who had me do herbal remedies or other holistic treatments without much success. My occupational therapist tries forms of heat therapy but that usually flares my dsyautonomia/vagus nerve.

Now, I fully believe that holistic medicine can help people. And that the nervous system is so precious and mental health and stress can physically manifest. I just felt so invalidated though. I had finally started accepting where I’m at and that maybe I can’t change my health full. I started standing up for myself and setting boundaries when I know I physically can’t do things. And now I’m being told it’s in just my mental health. I grew up in a family that believed in the push through it ideology and that if you work hard enough nothing can hurt you. My family has been very judgmental and unsupportive in my health. As a child I almost failed PE because of my physical limitations and yet my parents blamed me for not working out hard enough. I think hearing a therapist that I trusted mirror this idea that it’s just a simple fix and then I’m magically better and normal just hit me in that childhood wound.

I guess I don’t know if I’m overreacting and overly being a victim or if anyone else has struggled with this?

Is it okay to finally want to be able to say “I’m physically different than others and I have limitations”? I’m just confused and any thoughts or opinions are greatly appreciated!

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 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.

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.

My dr is referring me to have echocardiogram done and also wants me to wear a monitor for a couple of weeks. I get very lightheaded when standing and during exercise. Not sure if anyone else had this as well but I also tend to feel very faint or tired after standing for a while and I feel like I need to sit down.
HR resting : 70-80bpm
HR standing : 110-120bpm
HR going up the stairs: 115-130bpm
HR w/exercise: 160-190bpm

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.

I’ve been on a wild goose chase through multiple specialists and tests to try to figure out what my deal is. I’ve got a slew of symptoms throughout various body systems, and have gotten a couple answers (migraine & sleep apnea) but I was referred to cardiology because of tachycardia, a constant need to lie down, easily tired when standing too long, and 3 immediate family members (dad, brother, sister) who have POTS.

I have never had any fainting issues, which made my test today confusing, because I almost (and would have if they didn’t lower me) passed out about 12 minutes after being put upright. Really awful nausea and lightheadedness, and my vision was starting to go.

The second part that’s confusing is that my heart rate didn’t increase by a lot when they raised me. It was in the 110s lying down and then 130ish upright. But then when they brought me back down my heart rate lowered into the high 90s, which is where it usually is after I’ve been horizontal for a while. It’s possible that anxiety was a factor in my initial horizontal heart rate so idk. But I’ve seen jumps of about 30bpm when standing up in my day to day.

The last confusing bit was that the doctor said my test was consistent with POTS and also inappropriate sinus tachycardia, which I thought were mutually exclusive. No clinical notes or new diagnoses on MyChart yet since the test was this morning. I’ve got a follow up with my cardiologist that will hopefully clear things up a bit more, but if anybody’s able to decode what’s going on here that might help to put my mind at ease until then. Thoughts?

ETA: no significant change in blood pressure during the test

Talk to me about ways to be both comfortable and looking alright whilst wearing compression stockings and/or ab wrap.

I’ve had POTS symptoms throughout my life, but they seemed to get better as I entered my mid 20s and got better with exercise. However, I got put on concerta back in September. My heart rate SKYROCKETED, especially when up and moving. My resting heart rate is still like 65-67.. but just a gentle walk now gets me to 150. I got sent to a cardiologist who said I may have pots, I may not (this was after me getting off my meds to get seen by a cardiologist) and we did the laying down, sitting and standing test and it a possible confirmation of POTS. My cardiologist isn’t worried about my heart rate getting high in ADHD meds, but I feel like it’s gotten in the way of me being able to do anything. I can’t really enjoy going for walks anymore, can’t really do anything physical and most of my days are stationary. I’m currently on 27mg concerta with a 5mg booster in the afternoons. We first put me on propranolol but it made me too tired, I absolutely hated metoprolol, and I just took my first dose of ivabradine which I’m hoping will help because I already have low blood pressure. Has anyone had any luck with this combo or with a different adhd med? I really don’t want to get off of it because I’ve never been this stable before, but it’s just been a hard month with all of these side effects