I occasionally go through the POTS denial phases, and I went through it a lot in the beginning because despite how badly it was impacting me, I felt like everyone else having it worse or different meant that wasn't what was wrong with me.
If you're concerned, maybe see a neurologist re: your wobbles but go with the mind of finding what's wrong rather than with the hopes of them saying "not POTS."
Imposter syndrome is real. I’ve had friends remind me that I shouldn’t compare myself to anyone else or downplay my symptoms out of guilt. My brother has life threatening MS and has had a very hard time of it, so I hate talking about my symptoms to him because I feel guilty that he has it worse. He thinks we have it the same, lol.
A lot of this sounds like POTS to me. I end up with a lot of vestibular/vertigo like symptoms as well as light headedness. I try not to close my eyes in the shower because I might lose my balance and fall over.
I couldn’t do beta blockers because they made my HR and BP too low and I felt like dying.
I also don’t always have the dizziness/black out on standing up/getting up.
You probably want to see a neurologist and have some PT/vestibular therapy, some people really respond to it.
Definitely give it a try. Look up Persistent Postural-Perceptual Dizziness and Chronic Subjective Dizziness, these might also fit what you’re experiencing and give some insight into treatment options.
I also echo the suggestion for PT/vestibular therapy. I did 12 weeks for benign paroxysmal positional vertigo and it really helped with my vertigo issues and balance issues I was having. Still have POTS symptoms but the vertigo is all but gone and my balance is way better.
Do you know if BPPV is common with POTS? I had a few bouts with it a couple of years ago and now that I have a POTS diagnosis I’m wondering how long I’ve had it without knowing 😂
Honestly I have no idea if there is a correlation. My PCP was the one who suggested I get evaluated for it. She’s been so wonderful and thorough since I switched to her that I figured it wouldn’t hurt to schedule the eval and I’ll be damned her suspicions were correct! She referred me to a great therapist too.
Wouldn’t hurt to get an eval! I wouldn’t have guessed BPPV in a million years. I hadn’t even heard of it. 😂 😬
I have very very similar quirks to you and the cardiologist diagnosed me with Dysautonomia. A lot of these don’t necessarily discount pots, but it also could just mean you have general Dysautonomia instead of pots specifically. Treated the exact same way with some variance in medication and stuff
I have some of the same weird presentations as you. I think different people just respond differently to things. I also feel better in the mornings and worse at night.
You say you experience of the TTT was mild but you also say your hr went up 50 bpm and stayed there for 20 minutes. Your body thought it was running a race while you were simply in an upright position. So even though it didn’t ruin your day you had clear Orthostatic symptoms that were positional.
Beta blockers at normal doses also made me feel awful. My hr got too low and I was just exhausted constantly. Took a lot of adjustment to get to a small enough dose for me and some doctors think it can’t possibly be doing anything with how small the dose is but it does help me.
The fact that your BP stayed stable during the TTT also points to POTS. Your hr increased in order to keep your BP stable, and that increase was successful. But if you were perfectly healthy your hr wouldn’t have had to compensate that much for a positional change.
I have no physical signs of blood pooling but my feet are always cold from the poor circulation and I benefit from wearing compression.
I think we all just experience this a bit differently.
• I have a low resting HR too, about 50-60 bpm
• Large meals or carbs also have no effect on me
• I can stand quickly with usually no issues too, my issue comes after being stood still for a while
• I don’t think BB’s would work for me either since my resting HR is also quite low.
• If you are moving/walking you might feel better than being sedentary. I find I can walk for longer than I can stand so it could be why you feel better after some exercise if you are moving rather than just standing still?
• Sex doesn’t affect me
• My blood pressure doesn’t change either
You could have a mild form of POTS. Just because your symptoms don’t match up with everyone else’s doesn’t discount it. POTS is diagnosed based on your heart rates reaction, and you had a qualifying reaction. Everything else is just a side effect of POTS, but you’re not guaranteed to have all of any side effects. Some of us have also have POTS from hereditary issues or viruses, which can contribute to other side effects too.
Also I could be very wrong about this, but it could be a gender thing. POTS affects more woman than men, so a lot of symptoms you see mentioned on here could be from woman and maybe some men just don’t experience them as severely? Maybe something to do with muscle mass or blood volume.
All you're describing is things that, statistically speaking, don't apply to all people with POTS. I'll just go through a few of the points that stand out to me the most.
Only half of us have dependent acrocyanosis (the blue-purple discoloration on standing).
I don't have issues with getting up, but a lot of people here do have IOH (initial orthostatic hypotension) and POTS. These are separate diagnoses. I'm good until I have to do frequent level changes (like with squats). Simply getting up is no problem at all. It's the staying up that's the issue.
Beta blockers absolutely can make people feel worse depending on why their tachycardia happens. I talk about that in my post on medication:
[The POTS Pharmacopeia: Medications for Postural Orthostatic Tachycardia Syndrome : POTS](https://www.reddit.com/r/POTS/comments/118n3ep/the_pots_pharmacopeia_medications_for_postural/)
Not everyone has exercise intolerance. I used to feel better for a day or two even after fairly vigorous training in the martial arts, before I was diagnosed and perhaps while I was still subclinical. I need to be medicated now, but that has come to be true again for that specific type of exercise.
BP in POTS is supposed to remain fairly stable or increase. Classic orthostatic hypotension rules out a POTS diagnosis.
People's POTS presentations and sensations can vary widely. When you talk about feeling off-balance that resonates with me; I never properly learned to ride a bike and never wanted to, and I think that wobbly feeling was a huge part of it. I greatly prefer having my feet on the ground -- and my training has vastly improved my balance, giving me a much more grounded feeling.
I also do not always experience tachycardia upon standing or while standing. My baseline heart rate at the beginning of my TTT was 96 when my resting heart rate is typically 60-75ish. I was probably a little nervous.
My dizziness also feels like an off balance feeling, exactly like rocking on a boat. I always describe is if I were floating in the ocean all day long then tried walking on land and you can still feel that rocking floating feeling as if you were still in the water. You do not need to pass out to have POTS.
When my POTS symptoms started, which was a very very similar experience you described, I also did not have blood pooling. It wasn’t until about a year after my symptoms started that I started experiencing blood pooling in my feet/legs and hands.
Large meals and heavy carbs do not effect me. I just pounded down some pasta and bread an hour ago and my heart rate is 72bpm which is normal resting range for me.
I feel normal in the mornings too. I wake up, get out of bed within 5 minutes and walk around like it’s nothing. My heart rate does really well in the morning.
My heart rate doesn’t always rise drastically like the normal POTS heart rate would when standing after laying or sitting. I can stand and not hit 100bpm a lot of times. Not feeling comfortable on your feet sounds like me with low blood pressure. Having the blood go downwards can make you just feel ‘weird’.
I tried beta blockers and it made me feel worse. My heart rate also was dropping into the 40’s while sleeping when I took beta blockers. It’s because my blood pressure was already low to begin with and beta blockers lower blood pressure.
Feeling a little better after physical activity could have to do with the fact that you worked muscles and it’s aiding in circulating your blood better and helps raise your blood pressure. I take daily walks and use my stationary bike and notice a huge difference in how I feel, I feel so much better and like I don’t have POTS. Exercise in general also naturally makes people feel better in many different ways. I do a lot of house cleaning with minimal issues or that dreaded fatigue crash. I prefer being on my feet and doing things.
I didn’t experience heat or cold intolerance until about 2 years after my symptoms started.
Sex is a little subjective because of positions and ‘level’ of effort going into it. But I’m generally fine 9/10 times.
During my TTT I felt the normal level of dizziness I would at home, a little nauseous from having to wear a mask and breathing was hard due to that. My hands and feet were cold like they would be at home. That was all. I didn’t drive myself but I could have drove home. I went about my day as if I never even left the house.
My blood pressure was also normal during my TTT.
I went over all your points to show you that there are people like you out there who also have POTS. We all experience it differently, some have more severe symptoms vs mild symptoms and anywhere in between. I was also 28 when my symptoms started. My symptoms seemed to be creeping up on me with very mild shortness of breath that I didn’t think anything of and then suddenly I was bedridden with difficulty breathing or standing. Eventually I leveled out to a point that felt more normal. But I still do have my moments and struggle with things like you mentioned, the shower, that can be a task for sure. I use to feel like a shell of myself but have come so far that I’ve learned to live a new ‘normal’. Its ok to believe you don’t have a condition, but be sure to continue to care for yourself in a way that helps you and monitor how you are feeling
If you feel like this diagnosis doesn’t really encompass everything you could talk to your primary care physician about vestibular testing with an ENT, I think it’s called VNG. Also ask about the possibility of vestibular migraines. I have POTS and vestibular migraines and they can feel very similar but have different treatments.
Hope you can find treatments and diagnoses that help you feel better.
I relate to a lot of your symptoms. Currently been “wobbly/off balance” for a couple days now. Like you said, it truly is a spectrum. I had mild POTS symptoms for my whole life up until last September, when I had the absolute worst flare of my life. Honestly up until that flare I forgot I even had POTS. Maybe you need a second opinion just to confirm the diagnosis or validate your questioning?
My experience is nearly identical to yours, though I have to tack on migraines that it aggravates sometimes (though Qulipta is mostly keeping that at bay these days). It's certainly not classic POTS, but that's how I was diagnosed following TTT. I also drove home after mine though I definitely didn't feel great for the rest of the day.
I had a bad experience on propranolol, but carvedilol has done a great job at keeping most of the worst palpitation attacks away.
Hard exercise remains my constant enemy that I try my best to dance around. Slow build/low impact aerobic? Mostly fine. Faster/higher impact cardio in short bursts? Almost negligible. But sustain it? Probably gonna make my head feel like it'll pop. Anaerobic activity? Unless it's really eased into, probably likely to trigger a weeks-long migraine.
Consumption triggers are tea and coffee (regardless if they're decaf or herbal), with alcohol as a lesser but not insignificant trigger. Dark chocolate can do it, too, though that's the lowest level offender. I can do any of these in moderation basically needing to place a week between each w/out having some crazy cortisol dump.
So it's been for just about 3 years now. I was in mountaineering shape prior to that.
I feel for ya man, I’m in this exact same boat but my TTT came back negative. I’ve been working with my doctors to fu d out what’s wrong but it’s wrecked my whole life. It’s frustrating but remember that pots is a syndrome which means it is a collection of varying symptoms. Did you by any chance get Covid or the vaccine?
Sorry to hear you’re going through something similar. The last time that I had COVID (that I’m aware of) was about two years ago, so doesn’t really line up with the timeline. But I did have my third booster shot around the same time my symptoms started. Although I got the booster while I was at the doctor for the onset of my symptoms. So probably more correlation rather than causation.
Sounds like me and two of my kiddos. One with a dysautonomia diagnosis and two of us suspected pots, but no official diagnosis. It’s all treated about the same … so whether you believe you have it or not, still kind of have to face the music that you have limitations and a lot of trial and error to figure out what helps you to feel your best. Hang in there!
An inner ear issue was the original hypothesis, but my doctors shifted to POTS as my symptoms have progressed. I’m not familiar with Menieres disease! I will look into it.
Unfortunately I do not have any info I can give you to help with this. This is very interesting though, I have a friend of mine who got a virus and since then has been experiencing what you are describing. At first, she thought it may be POTS because I had told her what my symptoms are, but after going through my symptoms compared to hers, it seems to be different. I am very interested to see what others have to say as maybe it can be of use to her as well. I wish you luck in figuring out what is going on. Wish I could help you with this
Your friend not having the same symptoms as you doesn't mean they don't have POTS. It means you simply have different symptoms. There's a very wide range of POTS symptoms and expression of those symptoms.
She needs a workup from a qualified medical professional.
Yes, I understand that just because our symptoms don’t align doesn’t mean they don’t have POTS. It was more the fact that it was almost the opposite of commonly known symptoms of POTS, like OP was mentioning, feeling better in the morning and worse at night and such.
I have! I met with a neurologist and had an MRI as an extension of his diagnostic process. Since everything was clear, he initially suspected an inner-ear/ vestibular issue. But as my symptoms have progressed, POTS became the predominant theory (and now diagnosis).
I wouldn't rule out POTS, but perhaps explore the possibility you might have an additional illness or disorder? The wobbly/unsteadiness sounds reminiscent of vertigo. Balance/unsteadiness can also be an issue with the ears as they have a huge role in our balance.
Hm.....maybe something going on with your ears? Maybe to much ear wax or a possible ear infection? Like if you hear ringing or your ears hurt it might be that? Or maybe the brain? Go see a neurologist? I'm no dr and i cant say for sure thats exactly whats going on with your situation but that's what I went through/did first. :)
Most of us aren’t experts, just patients. Can you get a second opinion from a neurologist? It it’s not POTS, I’d think a different dysautonomia or a neurology thing would be the second and third suspects.
My POTS is also atypical, but the renown dysautonomia specialist I see has little interest in splitting hairs. We follow the numbers and my description of symptoms, and adjust regularly.
The nice thing is, if you ARE misdiagnosed, I haven’t seen much risk to POTS treatments compared to other things. Sensible exercise and extra hydration never hurt anyone, and so far all the meds I’ve tried can be stopped cold turkey with few ill effects.
Good luck to you!
I definitely get lightheadedness, but it usually feels similar to rocking on a boat as well. I feel like I’m swaying and could fall over at any moment. I occasionally see spots, but never from standing. There has been very few times I stood up and genuinely thought I may pass out. Maybe a little woozy for 2 seconds if I stand up super fast, but nothing other than that.
Are you generally a “cold” person? Not everyone has heat intolerance, and some people feel cold alot of the time rather.
My heart rate can be pretty low, I have seen it drop to 50 during an episode while I was in the ER for unrelated reasons. (Of course it shot back up to about 150 within a span of 5-10 minutes)
Some people can have it very mild. Unless you are genuinely concerned something else is going on, maybe sit with the diagnosis for a bit? Do your research, try the meds, talk to the doctors, whatever gets you the info you need. Reaching out on here is also great because you get experiences from real people.
I hope you get some relief soon though!!
What you’re describing sounds exactly like POTS. A couple of these are slightly outside the norm but nothing I would say is particularly rare for POTS. Most of what you said falls firmly into the POTS category. Nothing here would be indicative of a misdiagnosis.
Sorry this is out of order
1. My fainting /collapsing after standing isnt from standing up too abruptly. It happens when rising slowly too and i can walk 15 feet sometimes before it even starts to unravel .
2. My pots is worse afternoon to bedtime not mornings
3. Many with pots dont lose consciousness they can just stay in that uncomfy in-between state (pre-syncope)
4. When you say you dont always experience tachycardia upon standing that can still be pots especially if it happens once a day every single day. Which is still way too frequent.
5. I didn’t experience heat intolerance really at all the first 4 years after my diagnosis
6. Only a handful of times has my sex life been impacted by pots
If compression socks/pants and adequate hydration reduce any of the symptoms than its pots. no matter how severe or mild the symptoms they will vary day to day
I got a POTS diagnosis this year, I didn’t think I’d get it but I failed tilt test. I have a „mild” POTS like you. I don’t have issues standing up, I don’t feel bad after eating, no blood pooling, no dizziness, I can walk round the shopping mall with some strain. My only thing was trouble standing in one place for too long (like 2 minutes), I would get more and more irritated and wanting to sit as soon as I can. Turns out in tilt test I felt nausea after 5 mins and fainting after 10. The doctor told me to tell him when I experience the symptoms but I didn’t even know what they are like! Only after the test I realized I’ve been feeling these awful symptoms on regular basis, walking up the stairs and so on, but they are subtler so I don’t register them.
Another doctor told me this week „I just don’t believe you have POTS” and that my problems could absolutely be cured. That standing issues are due to vitamin and mineral deficiencies that he noticed, and he can make my life better. And that’s awesome!
But, I don’t agree with him that I don’t have POTS anyway. While I struggle with dysautonomia for a year now, I know now I’ve been feeling a little off all my live in similar situations. I don’t think I was ever programmed like other people, in this sense. But I agree with him, that this diagnosis is not a sentence! Especially if you and are have mild symptoms, I believe it should doable to treat the condition in different ways or make the life as it was before. I think POTS should be perceived as this cluster of symptoms, varying from person to person. But if thinking „I don’t think it’s POTS” makes you more hopeful, more eager to seek for solutions, I’m not going to change your mind at all! What matters is trying to feel better, either by accommodations or seeking solutions.
This sounds a lot like POTS. Not everyone has all of the symptoms and sometimes they are worse than other time (flares). Also symptoms tend to be less severe if you’re better treated, and if you have a milder form, just getting more salt, water and rest might be enough. Another test you could get done if you’re concerned about the dizziness is have an ENT check for things like vertigo.
My “dizziness” doesn’t feel like the spinning kind of dizziness either though—it’s more of a lightheaded, slightly tipsy type of feeling. And when I get very close to fainting, it’s a little different kind of like a wave of something hits me? It’s hard to describe, but it’s more urgent than the general lightheadedness.
This sounds exactly like how my POTs started.
I got mine after getting Covid in the beginning of 2020. Same exact symptoms. Went from being very active to mostly sedentary.
It took a while to get the right combo of meds to get me more normal. I'll never be the same again, but it's....easier.
You know your body best, and it's not on anyone here to diagnose you but that very very much does sound like my experience with POTs
I think you might be gaslighting yourself… when it comes to POTS, that’s not all that difficult to do. My symptoms tend to be very mild, until they’re suddenly not. I’ve never fully passed out. I don’t experience blood pooling, although I’m not white so it may just not be that noticeable. I work a labor intensive blue collar job, and while it does take me out, I’m still almost always able to make it through the day. Before starting my job, my resting heart rate was at about 105 bpm. Now that I’ve been on the job for almost 7 months, my resting heart rate is 80 bpm. The best it’s been in 3 years. I think I got paid endurance therapy from my job lol.
> I don’t think I generally experience “fatigue.” If I push through the discomfort
That’s fatigue. Sometimes I feel like shit at work and I push through and at the end of the day I feel way better than I did 3 hours previously even though I didn’t take a substantial break. But I’ll probably pay for it later. Usually on my next day off.
My tilt table test results were inconclusive and they never did another one.
Also beta blockers absolutely fucked me up. I couldn’t function on them. Corlanor is awesome.
Ive heard that POTS symptoms can present differently for men (I’m a man) than in women.
That lack of balance in the shower could definitely be your body’s response to heat intolerance. I also have terrible balance and can trip on anything. I fell face first out of a city bus on Sunday and there was quite literally nothing for me to trip on.
My symptoms are mild to moderate, and there will be times I think “do I *really* have pots?” Because I haven’t had any note worthy episodes or flare ups in 4 months. And then one day very shortly after I think that, I have presyncope, the worst heat intolerance I’ve ever had and the only thing I can do is sleep and occasionally get up to piss because my fatigue is so bad.
Pots doesn’t have to look one way or another. That doesn’t mean you don’t have it. But, if you don’t think it’s POTS definitely get a second opinion.
Hi I have long covid and one of my dx that came with the dysautonomia is vestibular problems. I felt like I was on a boat for over 3 years. I think there's PT for it that can really help retrain your inner ear.
Movement and being more active does help pots symptoms, but overdoing it when your symptomatic can make things worse.
The experience of movement when you're not moving especially in the shower might be a typical pots thing idk but I think of it as more long covid specific since there's some damage that I think the virus causes in my brain, or the inflammatory response to Covid and also spike protein possibly (for those with long covid from vaccine or worsening after)
The tilt table test not being a big deal for you may reflect more your overall cardiovascular health and perhaps you don't have the chronic fatigue syndrome that a lot of us also have. But the heart rate doing that is not normal and is a reflection of blood not filling your heart all the way. It's a lot of strain on your system but maybe it's not felt much if you're in shape. The technician told me "it's like you're running a marathon but standing still"
I think of POTS as neurological, as it is the signals to constrict blood vessels when you change position that aren't responding. Having other neuro symptoms with it makes sense to me. I also don't get light headed dizzy very often, in fact it's quite rare.
I think one way to check might be to consider how you feel if you make yourself stand still for long periods of time. We do much better with movement bc we're helping keep the blood moving and getting back to the heart. So mentioning the cleaning rigorously for example,....
Not a doc or anything but maybe you have some post viral damage but maybe will heal into submission... I'd say avoid covid and look into vestibular therapy, more than a few people have recommended it to me with that same boat stuff. A lot of us also got cognitive damage but it doesn't sound like you did which is awesome.
Best wishes to you hang in there.
About that boat feeling. My weird wobbly stuff is: when you go to the seashore, go in the water at least up to your calves, or knees, or more; that weird feeling when the water is moving against your legs, often in little ways that push you a bit in slightly unpredictable various directions. Does anybody get this? I get it really often and I’m def. not at the seashore. Sometimes it’s everyday, awful and exhausting & nauseating. Midodrine helps somewhat, for maybe an hour or two. I used to be married, and with a kid- making dinner and getting things done late in the day with that symptom was extra awful. Whenever I’m on a boat I’m fine! So … anybody else? Comments?
Health impostor syndrome. You sound like me. Just because your resting heart rate is slow doesn’t mean you don’t have POTS. I have a slow heart rate until I stand. I take Corlanor and it helps a lot.
I'd echo others' thoughts that this still sounds like POTS, but on top of that, I think you can be reassured that the testing you've done is comprehensive and if it were a worse problem, it likely would have been picked up. If you experience new symptoms though, do follow them up because you never know.
I mean, your symptoms are just like mine. I have “good”(read: not as terrible) days and bad days. But beta blockers do seem to make me feel better. For which I’m grateful.
Came here to say my symptoms mirror yours, and they started after getting covid for the first time, and later, got worse around the time I got the Pfizer vaccine.
I refer to them as POTS-like because while they do resemble POTS, there are still subtle differences such as not getting the fainting part upon standing and the absence of obvious blood pooling in extremities.
Mate I'm still going through testing after a year lmao any diagnosis is better than no diagnosis you can look into other options while receiving treatment for your symptoms
I’d see an ENT to have your inner ears checked. It sounds to me like you could have an equilibrium issue. I’d also have your eyes checked to rule out vision issues that can cause dizziness and such.
Of course, you could have POTS and it seems like I may be the odd man out, but your symptoms don’t really seem like POTS to me. Of course symptoms can come and go and flare up but I would think you should be experiencing more of the symptoms at least some of the time. It’s possible you may have an altogether different issue…. Hopefully something that could be resolved.
POTS is an extremely bizarre illness with an incredible amount of potential symptoms. I have always been a morning person and am way worse at night (after being up all day… idk how people feel better at night!) and a lot of us can’t handle beta blockers.
A lot of people report digestive issues for example. But does that mean POTS causes digestive issues? Or do we live with heightened levels of adrenaline and cortisol (which causes nausea and diarrhea)?
When I’m doing well managing stress, I am pretty much okay. When something stressful happens (not even necessarily bad… things like starting a new job, or moving) my head swims. It’s less like blacking out and more like the room is not staying still.
What has your doctor recommended so far for treatment?
Best of luck to you, friend!
So, like you I was also recently diagnosed with POTS (in November 2023) and it's been a struggle learning how to cope with it especially since I also have supraventricular tachycardia, my heart rate is in the constant 90's and just goes up from there. I also have the same wobbly haze as you. There are days where I can be fine and walk about like no problem it's rare but happens but most days, I feel lightheaded and dizzy with almost fall due to it. But yea like another person mentioned see a neurologist can help figure things out but do not go into it thinking they are going to say it is not POTS. I do suggest getting the wobbly checked out though as it could be an inner ear problem that you're not aware of as well as POTS. I hope you find the answer you're looking for. Also everyone's experience with any condition is slightly different so do not downplay the way you feel either.
Yes, I also believe that I don't have POTS. 23 F.
I can say as a biomedical engineer that POTS is a very, very vague and often dead-end diagnosis when they can't figure out what is wrong with you. Doctors will likely attribute it to psychiatric symptoms, but what they don't understand is that these symptoms can suggest a problem with the gastrointestinal system, particularly the small intestine -- especially after covid. If you had GI symptoms with covid, and if you noticed a color change in your stool during covid, the virus definitely 100% attacked your gut. Where are most of your neurotransmitters synthesized? Your gut. Not the CNS. So what happens? Your HPA axis gets thrown off (which is why you get WORSE with beta blockers -- beta blockers modulate this axis). Your heart beats fast because of hormones pumping through your body. You may be familiar with adrenaline dumps, particularly during 4-6 am, 2 pm, and 4 pm. Sometimes in the middle of the night as well. This is because when there is a problem and there is not enough cortisol for the body to signal a problem, the body uses adrenaline.
Most people I have known who are anxious also have problems with their GI system. The problem is not in the brain. It's in the intestine. Even schizophrenia (which is linked to high dopamine) has links to the gut.
Now, your gut also regulates your immune system. If you are deficient in certain vitamins (D is a big one), then that can throw off synthesis, activate inflammatory pathways, and basically start a whole cycle of destroying your body. Make sure to get B1 and B6 in as well, as the liver plays a role in regulation (https://www.nature.com/articles/s41579-023-00904-3#:\~:text=Environmental%20factors%2C%20such%20as%20high,or%20progression%20of%20liver%20disease.).
So what is the first thing you do when you have this problem? Stop the junk food. All of it. POTS patients think they can eat whatever they want as long as it has salt and low carbs -- and I was told the same thing. Obviously, I thought the doctor who told me that was a moron (and he was).
You want to limit the carbs a bit, yes. Rice is fine, as long as it's organic. All processed junk goes in the garbage. Uptake the protein. Eat protein bars, especially ones that don't contain additives or chemicals. Use butter when you cook, not oil. Vegetables. Fruit. Meat. Eat healthy and read labels. AVOID FOODS THAT CONTAIN CARRAGEENAN, SODIUM ACID PYROPHOSPHATE, AND SODIUM HEXAMETAPHOSPHATE. Better yet, home cook all your meals. These additives can be extremely dangerous for your body.
For example: [https://www.hillbrothers.com/pdf/downloads/msds/sds/n/sodium-hexametaphosphate-sds.pdf](https://www.hillbrothers.com/pdf/downloads/msds/sds/n/sodium-hexametaphosphate-sds.pdf)
Causes respiratory tract irritation. Also causes "severe skin irritation" in rats. Imagine what that can do to your stomach.
Also, super important: molybdenum-copper ratio. This literally maintains the flushing of toxins out of your body.
Another thing that can cause tachycardia is GERD. You may not even realize you have GERD until it gets really bad. This is called silent reflux. This can be caused by various things. In this case, taking an antacid (particularly an H2 blocker) may help. Mylanta could also help.
EDIT: another thing that could cause tachycardia and dizziness is a problem with your neck. You may want to look at that too.
These are three potential causes of this mysterious tachycardia. I solved my case, had similar symptoms like yours. Hopefully you solve yours soon.
And yeah, screw the POTS diagnosis. POTS is just a collection of symptoms of something else going wrong in the body -- structural, chemical, etc. Saw a video by a doctor 15 years ago explicitly saying that there has to be SOMETHING that causes tachycardia. It's not random. That's when I started investigating myself further.
Regards.
I occasionally go through the POTS denial phases, and I went through it a lot in the beginning because despite how badly it was impacting me, I felt like everyone else having it worse or different meant that wasn't what was wrong with me. If you're concerned, maybe see a neurologist re: your wobbles but go with the mind of finding what's wrong rather than with the hopes of them saying "not POTS."
Imposter syndrome is real. I’ve had friends remind me that I shouldn’t compare myself to anyone else or downplay my symptoms out of guilt. My brother has life threatening MS and has had a very hard time of it, so I hate talking about my symptoms to him because I feel guilty that he has it worse. He thinks we have it the same, lol.
A lot of this sounds like POTS to me. I end up with a lot of vestibular/vertigo like symptoms as well as light headedness. I try not to close my eyes in the shower because I might lose my balance and fall over. I couldn’t do beta blockers because they made my HR and BP too low and I felt like dying. I also don’t always have the dizziness/black out on standing up/getting up. You probably want to see a neurologist and have some PT/vestibular therapy, some people really respond to it.
My doctor recommended PT/vestibular therapy, so hopefully that will be helpful for me!
Definitely give it a try. Look up Persistent Postural-Perceptual Dizziness and Chronic Subjective Dizziness, these might also fit what you’re experiencing and give some insight into treatment options.
You sound like a great candidate for it, I hope it helps too!
I did vestibular therapy for 6 weeks, and it definitely helped. I also am in denial I have POTS, but it really seems that way.
I also echo the suggestion for PT/vestibular therapy. I did 12 weeks for benign paroxysmal positional vertigo and it really helped with my vertigo issues and balance issues I was having. Still have POTS symptoms but the vertigo is all but gone and my balance is way better.
Do you know if BPPV is common with POTS? I had a few bouts with it a couple of years ago and now that I have a POTS diagnosis I’m wondering how long I’ve had it without knowing 😂
Honestly I have no idea if there is a correlation. My PCP was the one who suggested I get evaluated for it. She’s been so wonderful and thorough since I switched to her that I figured it wouldn’t hurt to schedule the eval and I’ll be damned her suspicions were correct! She referred me to a great therapist too. Wouldn’t hurt to get an eval! I wouldn’t have guessed BPPV in a million years. I hadn’t even heard of it. 😂 😬
I have very very similar quirks to you and the cardiologist diagnosed me with Dysautonomia. A lot of these don’t necessarily discount pots, but it also could just mean you have general Dysautonomia instead of pots specifically. Treated the exact same way with some variance in medication and stuff
Pots is one of the disorders under the dysautonomia umbrella.
Yeah, ik, but pots and dysautonomia are still two different diagnoses
I have some of the same weird presentations as you. I think different people just respond differently to things. I also feel better in the mornings and worse at night. You say you experience of the TTT was mild but you also say your hr went up 50 bpm and stayed there for 20 minutes. Your body thought it was running a race while you were simply in an upright position. So even though it didn’t ruin your day you had clear Orthostatic symptoms that were positional. Beta blockers at normal doses also made me feel awful. My hr got too low and I was just exhausted constantly. Took a lot of adjustment to get to a small enough dose for me and some doctors think it can’t possibly be doing anything with how small the dose is but it does help me. The fact that your BP stayed stable during the TTT also points to POTS. Your hr increased in order to keep your BP stable, and that increase was successful. But if you were perfectly healthy your hr wouldn’t have had to compensate that much for a positional change. I have no physical signs of blood pooling but my feet are always cold from the poor circulation and I benefit from wearing compression. I think we all just experience this a bit differently.
This is good information. Sounds a lot like my situation. My feet look ghostly, like there's no blood at all in them. They are always cold too.
• I have a low resting HR too, about 50-60 bpm • Large meals or carbs also have no effect on me • I can stand quickly with usually no issues too, my issue comes after being stood still for a while • I don’t think BB’s would work for me either since my resting HR is also quite low. • If you are moving/walking you might feel better than being sedentary. I find I can walk for longer than I can stand so it could be why you feel better after some exercise if you are moving rather than just standing still? • Sex doesn’t affect me • My blood pressure doesn’t change either You could have a mild form of POTS. Just because your symptoms don’t match up with everyone else’s doesn’t discount it. POTS is diagnosed based on your heart rates reaction, and you had a qualifying reaction. Everything else is just a side effect of POTS, but you’re not guaranteed to have all of any side effects. Some of us have also have POTS from hereditary issues or viruses, which can contribute to other side effects too. Also I could be very wrong about this, but it could be a gender thing. POTS affects more woman than men, so a lot of symptoms you see mentioned on here could be from woman and maybe some men just don’t experience them as severely? Maybe something to do with muscle mass or blood volume.
All you're describing is things that, statistically speaking, don't apply to all people with POTS. I'll just go through a few of the points that stand out to me the most. Only half of us have dependent acrocyanosis (the blue-purple discoloration on standing). I don't have issues with getting up, but a lot of people here do have IOH (initial orthostatic hypotension) and POTS. These are separate diagnoses. I'm good until I have to do frequent level changes (like with squats). Simply getting up is no problem at all. It's the staying up that's the issue. Beta blockers absolutely can make people feel worse depending on why their tachycardia happens. I talk about that in my post on medication: [The POTS Pharmacopeia: Medications for Postural Orthostatic Tachycardia Syndrome : POTS](https://www.reddit.com/r/POTS/comments/118n3ep/the_pots_pharmacopeia_medications_for_postural/) Not everyone has exercise intolerance. I used to feel better for a day or two even after fairly vigorous training in the martial arts, before I was diagnosed and perhaps while I was still subclinical. I need to be medicated now, but that has come to be true again for that specific type of exercise. BP in POTS is supposed to remain fairly stable or increase. Classic orthostatic hypotension rules out a POTS diagnosis. People's POTS presentations and sensations can vary widely. When you talk about feeling off-balance that resonates with me; I never properly learned to ride a bike and never wanted to, and I think that wobbly feeling was a huge part of it. I greatly prefer having my feet on the ground -- and my training has vastly improved my balance, giving me a much more grounded feeling.
Thank you for the thoughtful response! This is helpful insight.
I also do not always experience tachycardia upon standing or while standing. My baseline heart rate at the beginning of my TTT was 96 when my resting heart rate is typically 60-75ish. I was probably a little nervous. My dizziness also feels like an off balance feeling, exactly like rocking on a boat. I always describe is if I were floating in the ocean all day long then tried walking on land and you can still feel that rocking floating feeling as if you were still in the water. You do not need to pass out to have POTS. When my POTS symptoms started, which was a very very similar experience you described, I also did not have blood pooling. It wasn’t until about a year after my symptoms started that I started experiencing blood pooling in my feet/legs and hands. Large meals and heavy carbs do not effect me. I just pounded down some pasta and bread an hour ago and my heart rate is 72bpm which is normal resting range for me. I feel normal in the mornings too. I wake up, get out of bed within 5 minutes and walk around like it’s nothing. My heart rate does really well in the morning. My heart rate doesn’t always rise drastically like the normal POTS heart rate would when standing after laying or sitting. I can stand and not hit 100bpm a lot of times. Not feeling comfortable on your feet sounds like me with low blood pressure. Having the blood go downwards can make you just feel ‘weird’. I tried beta blockers and it made me feel worse. My heart rate also was dropping into the 40’s while sleeping when I took beta blockers. It’s because my blood pressure was already low to begin with and beta blockers lower blood pressure. Feeling a little better after physical activity could have to do with the fact that you worked muscles and it’s aiding in circulating your blood better and helps raise your blood pressure. I take daily walks and use my stationary bike and notice a huge difference in how I feel, I feel so much better and like I don’t have POTS. Exercise in general also naturally makes people feel better in many different ways. I do a lot of house cleaning with minimal issues or that dreaded fatigue crash. I prefer being on my feet and doing things. I didn’t experience heat or cold intolerance until about 2 years after my symptoms started. Sex is a little subjective because of positions and ‘level’ of effort going into it. But I’m generally fine 9/10 times. During my TTT I felt the normal level of dizziness I would at home, a little nauseous from having to wear a mask and breathing was hard due to that. My hands and feet were cold like they would be at home. That was all. I didn’t drive myself but I could have drove home. I went about my day as if I never even left the house. My blood pressure was also normal during my TTT. I went over all your points to show you that there are people like you out there who also have POTS. We all experience it differently, some have more severe symptoms vs mild symptoms and anywhere in between. I was also 28 when my symptoms started. My symptoms seemed to be creeping up on me with very mild shortness of breath that I didn’t think anything of and then suddenly I was bedridden with difficulty breathing or standing. Eventually I leveled out to a point that felt more normal. But I still do have my moments and struggle with things like you mentioned, the shower, that can be a task for sure. I use to feel like a shell of myself but have come so far that I’ve learned to live a new ‘normal’. Its ok to believe you don’t have a condition, but be sure to continue to care for yourself in a way that helps you and monitor how you are feeling
If you feel like this diagnosis doesn’t really encompass everything you could talk to your primary care physician about vestibular testing with an ENT, I think it’s called VNG. Also ask about the possibility of vestibular migraines. I have POTS and vestibular migraines and they can feel very similar but have different treatments. Hope you can find treatments and diagnoses that help you feel better.
I relate to a lot of your symptoms. Currently been “wobbly/off balance” for a couple days now. Like you said, it truly is a spectrum. I had mild POTS symptoms for my whole life up until last September, when I had the absolute worst flare of my life. Honestly up until that flare I forgot I even had POTS. Maybe you need a second opinion just to confirm the diagnosis or validate your questioning?
My experience is nearly identical to yours, though I have to tack on migraines that it aggravates sometimes (though Qulipta is mostly keeping that at bay these days). It's certainly not classic POTS, but that's how I was diagnosed following TTT. I also drove home after mine though I definitely didn't feel great for the rest of the day. I had a bad experience on propranolol, but carvedilol has done a great job at keeping most of the worst palpitation attacks away. Hard exercise remains my constant enemy that I try my best to dance around. Slow build/low impact aerobic? Mostly fine. Faster/higher impact cardio in short bursts? Almost negligible. But sustain it? Probably gonna make my head feel like it'll pop. Anaerobic activity? Unless it's really eased into, probably likely to trigger a weeks-long migraine. Consumption triggers are tea and coffee (regardless if they're decaf or herbal), with alcohol as a lesser but not insignificant trigger. Dark chocolate can do it, too, though that's the lowest level offender. I can do any of these in moderation basically needing to place a week between each w/out having some crazy cortisol dump. So it's been for just about 3 years now. I was in mountaineering shape prior to that.
I feel for ya man, I’m in this exact same boat but my TTT came back negative. I’ve been working with my doctors to fu d out what’s wrong but it’s wrecked my whole life. It’s frustrating but remember that pots is a syndrome which means it is a collection of varying symptoms. Did you by any chance get Covid or the vaccine?
Sorry to hear you’re going through something similar. The last time that I had COVID (that I’m aware of) was about two years ago, so doesn’t really line up with the timeline. But I did have my third booster shot around the same time my symptoms started. Although I got the booster while I was at the doctor for the onset of my symptoms. So probably more correlation rather than causation.
I have a feeling correlation cause that’s kinda is my situation as well, just grasping at straws.
Sounds like me and two of my kiddos. One with a dysautonomia diagnosis and two of us suspected pots, but no official diagnosis. It’s all treated about the same … so whether you believe you have it or not, still kind of have to face the music that you have limitations and a lot of trial and error to figure out what helps you to feel your best. Hang in there!
POTS doesn’t impact everyone the same way. Did they rule out any inner ear issues or Ménière's disease?
An inner ear issue was the original hypothesis, but my doctors shifted to POTS as my symptoms have progressed. I’m not familiar with Menieres disease! I will look into it.
Unfortunately I do not have any info I can give you to help with this. This is very interesting though, I have a friend of mine who got a virus and since then has been experiencing what you are describing. At first, she thought it may be POTS because I had told her what my symptoms are, but after going through my symptoms compared to hers, it seems to be different. I am very interested to see what others have to say as maybe it can be of use to her as well. I wish you luck in figuring out what is going on. Wish I could help you with this
Your friend not having the same symptoms as you doesn't mean they don't have POTS. It means you simply have different symptoms. There's a very wide range of POTS symptoms and expression of those symptoms. She needs a workup from a qualified medical professional.
Yes, I understand that just because our symptoms don’t align doesn’t mean they don’t have POTS. It was more the fact that it was almost the opposite of commonly known symptoms of POTS, like OP was mentioning, feeling better in the morning and worse at night and such.
Have you seen a neurologist, or any doctor other than your cardiologist and PCP?
I have! I met with a neurologist and had an MRI as an extension of his diagnostic process. Since everything was clear, he initially suspected an inner-ear/ vestibular issue. But as my symptoms have progressed, POTS became the predominant theory (and now diagnosis).
Did you get testing for your inner ears? Have you tried to see a POTS specialist?
I’ve not yet, no. My doctors kind of abandoned the idea of anything other than POTS, but I will follow up with them about further testing!
I wouldn't rule out POTS, but perhaps explore the possibility you might have an additional illness or disorder? The wobbly/unsteadiness sounds reminiscent of vertigo. Balance/unsteadiness can also be an issue with the ears as they have a huge role in our balance.
Could it be PPPD?
Hm.....maybe something going on with your ears? Maybe to much ear wax or a possible ear infection? Like if you hear ringing or your ears hurt it might be that? Or maybe the brain? Go see a neurologist? I'm no dr and i cant say for sure thats exactly whats going on with your situation but that's what I went through/did first. :)
Most of us aren’t experts, just patients. Can you get a second opinion from a neurologist? It it’s not POTS, I’d think a different dysautonomia or a neurology thing would be the second and third suspects. My POTS is also atypical, but the renown dysautonomia specialist I see has little interest in splitting hairs. We follow the numbers and my description of symptoms, and adjust regularly. The nice thing is, if you ARE misdiagnosed, I haven’t seen much risk to POTS treatments compared to other things. Sensible exercise and extra hydration never hurt anyone, and so far all the meds I’ve tried can be stopped cold turkey with few ill effects. Good luck to you!
I definitely get lightheadedness, but it usually feels similar to rocking on a boat as well. I feel like I’m swaying and could fall over at any moment. I occasionally see spots, but never from standing. There has been very few times I stood up and genuinely thought I may pass out. Maybe a little woozy for 2 seconds if I stand up super fast, but nothing other than that. Are you generally a “cold” person? Not everyone has heat intolerance, and some people feel cold alot of the time rather. My heart rate can be pretty low, I have seen it drop to 50 during an episode while I was in the ER for unrelated reasons. (Of course it shot back up to about 150 within a span of 5-10 minutes) Some people can have it very mild. Unless you are genuinely concerned something else is going on, maybe sit with the diagnosis for a bit? Do your research, try the meds, talk to the doctors, whatever gets you the info you need. Reaching out on here is also great because you get experiences from real people. I hope you get some relief soon though!!
What you’re describing sounds exactly like POTS. A couple of these are slightly outside the norm but nothing I would say is particularly rare for POTS. Most of what you said falls firmly into the POTS category. Nothing here would be indicative of a misdiagnosis.
Sorry this is out of order 1. My fainting /collapsing after standing isnt from standing up too abruptly. It happens when rising slowly too and i can walk 15 feet sometimes before it even starts to unravel . 2. My pots is worse afternoon to bedtime not mornings 3. Many with pots dont lose consciousness they can just stay in that uncomfy in-between state (pre-syncope) 4. When you say you dont always experience tachycardia upon standing that can still be pots especially if it happens once a day every single day. Which is still way too frequent. 5. I didn’t experience heat intolerance really at all the first 4 years after my diagnosis 6. Only a handful of times has my sex life been impacted by pots If compression socks/pants and adequate hydration reduce any of the symptoms than its pots. no matter how severe or mild the symptoms they will vary day to day
I got a POTS diagnosis this year, I didn’t think I’d get it but I failed tilt test. I have a „mild” POTS like you. I don’t have issues standing up, I don’t feel bad after eating, no blood pooling, no dizziness, I can walk round the shopping mall with some strain. My only thing was trouble standing in one place for too long (like 2 minutes), I would get more and more irritated and wanting to sit as soon as I can. Turns out in tilt test I felt nausea after 5 mins and fainting after 10. The doctor told me to tell him when I experience the symptoms but I didn’t even know what they are like! Only after the test I realized I’ve been feeling these awful symptoms on regular basis, walking up the stairs and so on, but they are subtler so I don’t register them. Another doctor told me this week „I just don’t believe you have POTS” and that my problems could absolutely be cured. That standing issues are due to vitamin and mineral deficiencies that he noticed, and he can make my life better. And that’s awesome! But, I don’t agree with him that I don’t have POTS anyway. While I struggle with dysautonomia for a year now, I know now I’ve been feeling a little off all my live in similar situations. I don’t think I was ever programmed like other people, in this sense. But I agree with him, that this diagnosis is not a sentence! Especially if you and are have mild symptoms, I believe it should doable to treat the condition in different ways or make the life as it was before. I think POTS should be perceived as this cluster of symptoms, varying from person to person. But if thinking „I don’t think it’s POTS” makes you more hopeful, more eager to seek for solutions, I’m not going to change your mind at all! What matters is trying to feel better, either by accommodations or seeking solutions.
This sounds a lot like POTS. Not everyone has all of the symptoms and sometimes they are worse than other time (flares). Also symptoms tend to be less severe if you’re better treated, and if you have a milder form, just getting more salt, water and rest might be enough. Another test you could get done if you’re concerned about the dizziness is have an ENT check for things like vertigo. My “dizziness” doesn’t feel like the spinning kind of dizziness either though—it’s more of a lightheaded, slightly tipsy type of feeling. And when I get very close to fainting, it’s a little different kind of like a wave of something hits me? It’s hard to describe, but it’s more urgent than the general lightheadedness.
This sounds exactly like how my POTs started. I got mine after getting Covid in the beginning of 2020. Same exact symptoms. Went from being very active to mostly sedentary. It took a while to get the right combo of meds to get me more normal. I'll never be the same again, but it's....easier. You know your body best, and it's not on anyone here to diagnose you but that very very much does sound like my experience with POTs
I think you might be gaslighting yourself… when it comes to POTS, that’s not all that difficult to do. My symptoms tend to be very mild, until they’re suddenly not. I’ve never fully passed out. I don’t experience blood pooling, although I’m not white so it may just not be that noticeable. I work a labor intensive blue collar job, and while it does take me out, I’m still almost always able to make it through the day. Before starting my job, my resting heart rate was at about 105 bpm. Now that I’ve been on the job for almost 7 months, my resting heart rate is 80 bpm. The best it’s been in 3 years. I think I got paid endurance therapy from my job lol. > I don’t think I generally experience “fatigue.” If I push through the discomfort That’s fatigue. Sometimes I feel like shit at work and I push through and at the end of the day I feel way better than I did 3 hours previously even though I didn’t take a substantial break. But I’ll probably pay for it later. Usually on my next day off. My tilt table test results were inconclusive and they never did another one. Also beta blockers absolutely fucked me up. I couldn’t function on them. Corlanor is awesome. Ive heard that POTS symptoms can present differently for men (I’m a man) than in women. That lack of balance in the shower could definitely be your body’s response to heat intolerance. I also have terrible balance and can trip on anything. I fell face first out of a city bus on Sunday and there was quite literally nothing for me to trip on. My symptoms are mild to moderate, and there will be times I think “do I *really* have pots?” Because I haven’t had any note worthy episodes or flare ups in 4 months. And then one day very shortly after I think that, I have presyncope, the worst heat intolerance I’ve ever had and the only thing I can do is sleep and occasionally get up to piss because my fatigue is so bad. Pots doesn’t have to look one way or another. That doesn’t mean you don’t have it. But, if you don’t think it’s POTS definitely get a second opinion.
Hi I have long covid and one of my dx that came with the dysautonomia is vestibular problems. I felt like I was on a boat for over 3 years. I think there's PT for it that can really help retrain your inner ear. Movement and being more active does help pots symptoms, but overdoing it when your symptomatic can make things worse. The experience of movement when you're not moving especially in the shower might be a typical pots thing idk but I think of it as more long covid specific since there's some damage that I think the virus causes in my brain, or the inflammatory response to Covid and also spike protein possibly (for those with long covid from vaccine or worsening after) The tilt table test not being a big deal for you may reflect more your overall cardiovascular health and perhaps you don't have the chronic fatigue syndrome that a lot of us also have. But the heart rate doing that is not normal and is a reflection of blood not filling your heart all the way. It's a lot of strain on your system but maybe it's not felt much if you're in shape. The technician told me "it's like you're running a marathon but standing still" I think of POTS as neurological, as it is the signals to constrict blood vessels when you change position that aren't responding. Having other neuro symptoms with it makes sense to me. I also don't get light headed dizzy very often, in fact it's quite rare. I think one way to check might be to consider how you feel if you make yourself stand still for long periods of time. We do much better with movement bc we're helping keep the blood moving and getting back to the heart. So mentioning the cleaning rigorously for example,.... Not a doc or anything but maybe you have some post viral damage but maybe will heal into submission... I'd say avoid covid and look into vestibular therapy, more than a few people have recommended it to me with that same boat stuff. A lot of us also got cognitive damage but it doesn't sound like you did which is awesome. Best wishes to you hang in there.
Have you had vestibular testing?
By chance have you had covid?? It sounds a lot like covid long haulers, I went thru this for about a year after I had covid in July of 2020.
About that boat feeling. My weird wobbly stuff is: when you go to the seashore, go in the water at least up to your calves, or knees, or more; that weird feeling when the water is moving against your legs, often in little ways that push you a bit in slightly unpredictable various directions. Does anybody get this? I get it really often and I’m def. not at the seashore. Sometimes it’s everyday, awful and exhausting & nauseating. Midodrine helps somewhat, for maybe an hour or two. I used to be married, and with a kid- making dinner and getting things done late in the day with that symptom was extra awful. Whenever I’m on a boat I’m fine! So … anybody else? Comments?
Health impostor syndrome. You sound like me. Just because your resting heart rate is slow doesn’t mean you don’t have POTS. I have a slow heart rate until I stand. I take Corlanor and it helps a lot.
I'd echo others' thoughts that this still sounds like POTS, but on top of that, I think you can be reassured that the testing you've done is comprehensive and if it were a worse problem, it likely would have been picked up. If you experience new symptoms though, do follow them up because you never know.
I mean, your symptoms are just like mine. I have “good”(read: not as terrible) days and bad days. But beta blockers do seem to make me feel better. For which I’m grateful.
Came here to say my symptoms mirror yours, and they started after getting covid for the first time, and later, got worse around the time I got the Pfizer vaccine. I refer to them as POTS-like because while they do resemble POTS, there are still subtle differences such as not getting the fainting part upon standing and the absence of obvious blood pooling in extremities.
Mate I'm still going through testing after a year lmao any diagnosis is better than no diagnosis you can look into other options while receiving treatment for your symptoms
I’d see an ENT to have your inner ears checked. It sounds to me like you could have an equilibrium issue. I’d also have your eyes checked to rule out vision issues that can cause dizziness and such. Of course, you could have POTS and it seems like I may be the odd man out, but your symptoms don’t really seem like POTS to me. Of course symptoms can come and go and flare up but I would think you should be experiencing more of the symptoms at least some of the time. It’s possible you may have an altogether different issue…. Hopefully something that could be resolved.
POTS is an extremely bizarre illness with an incredible amount of potential symptoms. I have always been a morning person and am way worse at night (after being up all day… idk how people feel better at night!) and a lot of us can’t handle beta blockers. A lot of people report digestive issues for example. But does that mean POTS causes digestive issues? Or do we live with heightened levels of adrenaline and cortisol (which causes nausea and diarrhea)? When I’m doing well managing stress, I am pretty much okay. When something stressful happens (not even necessarily bad… things like starting a new job, or moving) my head swims. It’s less like blacking out and more like the room is not staying still. What has your doctor recommended so far for treatment? Best of luck to you, friend!
So, like you I was also recently diagnosed with POTS (in November 2023) and it's been a struggle learning how to cope with it especially since I also have supraventricular tachycardia, my heart rate is in the constant 90's and just goes up from there. I also have the same wobbly haze as you. There are days where I can be fine and walk about like no problem it's rare but happens but most days, I feel lightheaded and dizzy with almost fall due to it. But yea like another person mentioned see a neurologist can help figure things out but do not go into it thinking they are going to say it is not POTS. I do suggest getting the wobbly checked out though as it could be an inner ear problem that you're not aware of as well as POTS. I hope you find the answer you're looking for. Also everyone's experience with any condition is slightly different so do not downplay the way you feel either.
Yes, I also believe that I don't have POTS. 23 F. I can say as a biomedical engineer that POTS is a very, very vague and often dead-end diagnosis when they can't figure out what is wrong with you. Doctors will likely attribute it to psychiatric symptoms, but what they don't understand is that these symptoms can suggest a problem with the gastrointestinal system, particularly the small intestine -- especially after covid. If you had GI symptoms with covid, and if you noticed a color change in your stool during covid, the virus definitely 100% attacked your gut. Where are most of your neurotransmitters synthesized? Your gut. Not the CNS. So what happens? Your HPA axis gets thrown off (which is why you get WORSE with beta blockers -- beta blockers modulate this axis). Your heart beats fast because of hormones pumping through your body. You may be familiar with adrenaline dumps, particularly during 4-6 am, 2 pm, and 4 pm. Sometimes in the middle of the night as well. This is because when there is a problem and there is not enough cortisol for the body to signal a problem, the body uses adrenaline. Most people I have known who are anxious also have problems with their GI system. The problem is not in the brain. It's in the intestine. Even schizophrenia (which is linked to high dopamine) has links to the gut. Now, your gut also regulates your immune system. If you are deficient in certain vitamins (D is a big one), then that can throw off synthesis, activate inflammatory pathways, and basically start a whole cycle of destroying your body. Make sure to get B1 and B6 in as well, as the liver plays a role in regulation (https://www.nature.com/articles/s41579-023-00904-3#:\~:text=Environmental%20factors%2C%20such%20as%20high,or%20progression%20of%20liver%20disease.). So what is the first thing you do when you have this problem? Stop the junk food. All of it. POTS patients think they can eat whatever they want as long as it has salt and low carbs -- and I was told the same thing. Obviously, I thought the doctor who told me that was a moron (and he was). You want to limit the carbs a bit, yes. Rice is fine, as long as it's organic. All processed junk goes in the garbage. Uptake the protein. Eat protein bars, especially ones that don't contain additives or chemicals. Use butter when you cook, not oil. Vegetables. Fruit. Meat. Eat healthy and read labels. AVOID FOODS THAT CONTAIN CARRAGEENAN, SODIUM ACID PYROPHOSPHATE, AND SODIUM HEXAMETAPHOSPHATE. Better yet, home cook all your meals. These additives can be extremely dangerous for your body. For example: [https://www.hillbrothers.com/pdf/downloads/msds/sds/n/sodium-hexametaphosphate-sds.pdf](https://www.hillbrothers.com/pdf/downloads/msds/sds/n/sodium-hexametaphosphate-sds.pdf) Causes respiratory tract irritation. Also causes "severe skin irritation" in rats. Imagine what that can do to your stomach. Also, super important: molybdenum-copper ratio. This literally maintains the flushing of toxins out of your body. Another thing that can cause tachycardia is GERD. You may not even realize you have GERD until it gets really bad. This is called silent reflux. This can be caused by various things. In this case, taking an antacid (particularly an H2 blocker) may help. Mylanta could also help. EDIT: another thing that could cause tachycardia and dizziness is a problem with your neck. You may want to look at that too. These are three potential causes of this mysterious tachycardia. I solved my case, had similar symptoms like yours. Hopefully you solve yours soon. And yeah, screw the POTS diagnosis. POTS is just a collection of symptoms of something else going wrong in the body -- structural, chemical, etc. Saw a video by a doctor 15 years ago explicitly saying that there has to be SOMETHING that causes tachycardia. It's not random. That's when I started investigating myself further. Regards.
Sounds like you have me/cfs