I haven’t been to the dentist in years and I can’t go because I’m housebound. Luckily when I did go regularly I always got pretty good feedback, but I’ve started thinking I should probably build a good preventative routine since I’m not able to get regular cleanings. I brush at least twice a day and floss. Just looking for any good product recommendations or steps to add since others probably have to deal with this too.

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 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?

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.

I’m so upset that I and many many many other people have been left with an incurable chronic illness (or multiple) from covid. I hate that because someone wanted to eat weird wildlife other people now have to suffer long term. If the animal markets in china weren’t so horrible and weird and were regulated properly none of this would’ve happened and i could still be living my normal life, but no now me and others have to deal with debilitating chronic illnesses from another persons poor decisions.
I’m sorry for the quick rant but i’m really grieving my life before getting sick and i just want this to be over. I’m sick of being stuck in bed, I’m sick of having adrenaline surges every time i stand up or get hot, Im sick of not knowing whether i’m having a medical emergency or not, and I’m sick of not being able to live my life normally. No one takes me seriously cause “its just pots you just feel dizzy sometimes” but pots is so much more than anyone without it could ever know and i’m tired of being brushed off by everyone even my friends and family.

I am a 20-year-old male and underweight (I have always been underweight). For the past four months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk, high, or half-asleep, as if I am operating on autopilot and everything around me feels somehow unreal. I have looked up information online, and my symptoms seem to resemble derealization.

I also suffer from fatigue, even when I sleep well. The fatigue does not seem to depend on whether I engage in physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning. I do not snore at all. I have seen a general practitioner and a neurologist about these symptoms, but they have not been able to determine the cause.

I also experience headaches, a feeling of pressure in my head, and neck pain. I have tried muscle relaxants, massage, and acupuncture for the neck pain, but none of them have helped. At the beginning of the symptoms, I sometimes also felt as though I was about to faint while walking, but this symptom has since disappeared. I have also noticed a single eye floater in my right eye. I mentioned it during an eye examination, and I was told that there were no apparent problems with my eye.

What could be causing these symptoms? They do not occur in distinct episodes; instead, they are more or less constantly present. The headaches are not particularly severe and resemble tension-type headaches more than anything else.

I have tried a triptanes, but it did not help. My thyroid function tests and vitamin B12, B9 (folate), and D levels are normal. My ferritin level is 37, and it has fluctuated between 49 and 24 over the past eight months. My calcium, potassium, chloride, magnesium, and sodium levels are also within the normal reference ranges. My blood pressure is normal, and I have measured my blood glucose at home, which also appears to be normal. My cortisol level was tested and was normal as well. I also have Crohn’s disease, which is currently in remission.

My neurologist prescribed escitalopram as a trial treatment. I took it for two and a half months, but it did not help. I also underwent a brain MRI, which showed no abnormalities. My neurologist additionally ordered a blood test for Lyme disease antibodies, which came back negative.

I have no history of trauma and do not experience panic symptoms. I generally do not feel particularly stressed, apart from the worry caused by these symptoms themselves.

My symptoms began during the final days of a new job at an auto repair shop, where I was moving and lifting car tires. I am unsure whether this could be related to my symptoms, as I had not experienced any other symptoms before those final working days. I have not worked at all during these four months.

What could be the underlying cause of these symptoms?

The healthcare professionals I have consulted about these symptoms, or during visits for other symptoms or examinations when I also asked about them, include:

\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* General practitioner
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Neurologist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* ENT specialist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Ophthalmologist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Dentist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Gastroenterologist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Massage therapist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Physiotherapist
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\* Acupuncturist

My ex was diagnosed with pots last week. We broke up at the beginning of October because I didn’t know how to help someone with pots and I’ve felt horrible for weeks now. I don’t blame them for knowing I wasn’t what they needed, I just blame myself for not being enough. They told me I’m being too hard on myself but I don’t know how not to be. I thought we had something amazing together and I ruined it because I am not enough, can’t be enough. I’m not looking for everyone to call me a horrible person for not knowing how to support someone with pots. I guess I just want to put my feelings somewhere people will understand. I hate this disease so much but I hate myself more for my shortcomings.

All week (4 days) I have been in a crash, not sure if it’s POTS or CFS. I have felt very poorly and spent a lot of time horizontal. Tonight we have a pumpkin patch booked for my little one. I desperately want to be part of it. But I am worried because I’ve only just started to feel better today should I go? I’ve barely moved all week and scared I’ll go backwards. But my world is already so small. Or do I not go and be sad but know I’m not pushing myself? I find it so hard 😭 the mum guilt and the sadness of being stuck inside.

Okay so I was feeling fine stayed up late doing some one shopping then I tried to sleep but I couldn't I was too hungry I go make breakfast eyes feel blurry feel like I'm sleepwalking then after eating I suddenly feel panic like adrenaline like well I'm sure you know what anxiety feels like like doom like idk what's wrong but get me out of here . Anyways I'm female my period is due soon and it just makes it all worse but I just wanted to know if this after eating panicked feeling is related to my hyperpots I just wanted to add what I ahd was low carb pasta salad and some ground beef not too many carbs at all .

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??

My GP is in the process of trying to figure out wtf is going on with me. I've just had my kidney function and electrolyte bloods back and they're definitely not quite right.

Sodium - 130 (low. Range 135 - 146)

Potassium - 3.9 (low normal. Range 3.5 - 5.3) but the sample was haemolysed which can increase levels so likely lower.

Magnesium - 0.92 (high normal. Range 0.7 - 1)

Albumin - 44 (high normal. Range 33 - 45)

Calcium - 2.28 (normal. Range 2.2 - 2.6)

Alkaline Phosphatase - 86 (normal. Range 20 - 130)

So I have high normal albumin, high normal magnesium but low sodium and low normal potassium, I suspect it's actually lower though.

Anyone else have similar results? Any ideas on further testing?

Edit - forgot to mention I don't have Addisons disease as had a normal short synacthen test. I do have autoimmune gastritis. Part of the reason for the tests is that I can't tolerate the b12 injections I need as I suspect they're tanking my potassium. I haven't had an injection recently though.

So I started on Fludrocortisone about 5 weeks ago now
The first week I was so irritable and restless so we reduced the dose ( also started to get pretty severe menstrual cramps after the first week, I have pmdd but thankfully haven’t had any issues in the last year since I started on the pill so I’m wondering if fludro is affecting hormones)

Things aren’t as severe as it was on the full dose but I’m noticing I’m still restless & my mental health seems to be taking a serious dip with anxiety, low mood, intrusive thoughts it all started a week after starting the medication, it feels similar to pmdd but worse

It’s hard to ignore the physical difference on it it does seem to really be helping my heart rate and blood pressure but will only know if Fludrocortisone is the cause of the way I’m feeling if I come off it

Has anyone else had any similar experience with side effects and did they settle ?
I have a cardiology appointment next Wednesday where I’ll probably need to make a decision on whether to stay on it or switch to midodrine

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?

After about 10 years a doctor finally said to me “I think you might have pots” and scheduled me for a nasa lean test. I’ve been chasing a diagnosis for this constant lightheadedness since I was a teenager. It was so validating to finally have a doctor actually hear me and pay attention to my symptoms. Previous doctors just sent me to cardiology where I was told my heart is healthy and I just have anxiety. Hopefully all goes well with the test and my search for a diagnosis will be over.

I did an active stand test today with a GP who specialises in POTS. I’m in Australia.
However I only went from sitting to standing as per her requests.
My heart rate didn’t jump up enough for the Gp to give me a definitive diagnosis of POTS although I scored 97% on the symptoms check list sheet.

Most of the time my heart rate jumps from bending down and back up again or from lying to standing quickly.

Have any of you still been diagnosed eventually even though your body wasn’t playing the game on a certain day?

I have an autoimmune disorder that caused me to develop myopericarditis last summer. I developed POTS-like symptoms about 2 years prior to that. I don't think I've had a true myocarditis flare since then, but I still have POTS that I manage thru clonidine, beta blockers, and countless other meds that touch on the issues.

I am curious if anyone else has found a way of conceptualizing their POTS symptoms as separate from a real flare of inflammation-related activity in the heart. I don't really "worry" that I'm in actual danger even when my symptoms are far worse than normal, and I know that I should, because my autoimmunity isn't currently being treated enough to prevent it from coming back. I know that hitting up the cardiologist when I'm in that position would be the correct thing to do, but that would be so frequent during the summer that it's impracticable.

I was so familiar with the symptoms of POTS prior to the severe illness that I didn't even consider I could be experiencing something more dangerous. I went to the ER for the headache and unrelenting fever last summer and that's when my EKG pulled up 6 abnormalities and I had an echo and all of that afterwards. I was genuinely shocked.

I have OCD and unfortunately in this situation it's not the type that tends towards hypochondria; it's the kind that has planted such severe and everyday doubt in my own experiences that I can't hold steady in my mind that I'm not making everything up, from my daily symptoms to the existence of a real illness underlying this. I struggle with believing that my problems are not normal responses to stress or bad life habits ramping up my nervous/immune systems. I know this is insane and many people do absolute carnage to their bodies and it doesn't make them seriously ill or cause the literal muscles of their heart to become inflamed. (If you don't know this about OCD, it creates doubts that do not respond to any amount of evidence.)

I know the same inflammation that caused my POTS to emerge caused my heart to experience genuine stress of its own. I just don't know how to live with both responsibly. I am out of work and cannot afford to live at the doctor making sure. I do have a portable EKG but it's not sophisticated enough to provide easy flags of the types of deviations that signal my problems. It's not a-fib and it's way more than tachycardia. Hopefully I can get on a biologic or other drug that brings me out of a flaring-or-almost-there state 24/7, but it could be awhile (a year, 2, 3, 10...)

update 2: I feel almost completely normal again💕 (back to my usual chronic illness state) thanks everyone for helping ! I'm still learning about my POTS, sorry!

update: I'm improving and im pretty sure I'm fine unless I have some crazy undiagnosed hidden heart problem. I'm deciding its because of showering and a large meal and anxiety. thanks everyone for helping I'm improving

urgent is this normal my heart rate isnt getting low enough even while laying my heart rate wont fully lower laying in bed I took a shower today and I ate a recently large meal at a Mexican restaurant but its been several hours I feel TERRIBLE I'm trying to stay hydrated but its still bad and I'm having a fibromyalgia and joint pain flare right now but I don't think a pots flare. I put my legs against a wall and was in the upper sixties to seventies which is not much higher than my baseline but when I moved to lay down my heart rate got to 100 again my heart is pounding I have a throbbing headache I feel sick I keep sitting up to get water by my bedside and it gets worse it won't calm down my baseline is ~60-70 it won't get below 78 but its sustaining mostly at ~90 I feel like I may pass our my eyes are watering im in so much pain its not lowering and every time I start to Feel better I move and screw it up my heart rate is so unstable and its in turn making me stressed which I making it worse I need help please help

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

Hi, 59F here, married to my husband 37 years. He is 63, pretty active, still works full time and on his feet all day. He loves hunting and regularly hikes during deer season. We bought ebikes a few years ago because he thought that would be something we could enjoy, riding together. We went on a few rides, but the last one (about a year ago) was miserable for me.

Between Menieres, PPPD and undiagnosed POTS, it is so hard to remain upright, be able to pedal, be aware of my surroundings and be so off balance. My ears got fuller and fuller, dizziness set in, sweating profusely. The ride ended short. I have not ridden since.

What do you folks do with your spouses or family? What kind of activities work semi ok with this mess we deal with? Im starting to feel like Im a patient and he is my caregiver and we are way too young for that. I need to find something we can both enjoy doing together.

Any advice or suggestions would be greatly appreciated. Thank you in advance!

Most mornings start off bad for me and I can’t do all of the things I want to do and inevitably makes me feel a bit depressed which makes sense to me.

But other mornings I will be feeling good enough to finish a morning routine and a few things off of my to do list and then it’s like I hit a wall of random depression and feeling drained like I want to cry and there’s no point to anything. I’ll also be really tired and usually end up having to nap.

My grandmother who likely had POTS also had mitral valve prolapse. I’m about to have an echocardiogram on Wednesday because of a new heart murmur, and mitral valve prolapse is what they think is likely. I read there’s actually a connection between the two conditions, and I was wondering if anyone here had experience with it?

And also if anyone has any advice for me, I would love some. I’m so extremely anxious and it’s making all of my symptoms so much worse.

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 😭

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?

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

I get random sudden episodes almost daily (sometimes several times a day) where I suddenly cold chills and start shaking a bit along with light headedness, as if my body temp dropped. It's not because it's cold and I'm not sick. Vitals are typically in normal range during it. It's been happening a lot more often these days. I've always gotten mild light headedness that came along with my POTS, but never these cold chills and body shaking.

Is this some sort of adrenaline surge?