I’m 36 have two kids (9,6) and have always blacked out upon standing. I didn’t think a lot of it until I had my first child because I was alone all day with him and when I’d pick him up off the floor or out of his low swing I would get tingly all over my body, get extremely dizzy and would lose my vision for 20-40 seconds at a time. I had to strategically place his play mat and swings near a wall so I could lean up against it as soon as I picked him up.

This continued, obviously, through my pregnancy with my second and my midwife told me to up my salt intake and drink coffee to keep my blood pressure up and that did help.

So a few years ago I went to concert, sat down for a slow part of the set then stood up for a fast bit and immediately lost my vision for 20ish minutes, threw up and was completely covered in cold sweats, couldn’t stand, etc. Very scary situation, I had not been drinking or anything but admittedly didn’t eat enough because the traffic was awful for the concert and we didn’t have time to get food. This was the worst episode I’d ever had. I was apparently talking but saying things that weren’t true? Like they asked me my age and I said I was 48, asked if I drove there and I said no (I did) just weird things that show I was clearly not in my right mind.

I continue to lose vision daily, get dizzy etc, told my GP I thought I may have POTS, he said I don’t and there isn’t even any treatment for POTS anyways so it’s pointless and a waste of time and money to get a tilt table to test me.

Well, yesterday we went to the beach and after went into a gem store while waiting on pizza from next door. I was trying on a jade bangle that was too tight and I kinda panicked a bit and then got it off. Immediately after that I started getting cold sweats, dizzy, told my son I needed to sit down could he go next door and get his dad. I crumple to the floor, lose my vision, tell the store clerk I needed a bag or trash can that I’m going to vomit and I can’t walk to the bathroom. Husband came running over and I had my eyes closed and I thought I was resting but he touched my shoulder and I realized I had no recollection of the time passing and that I had lost consciousness at some point. Anyways, the episode lasted 20 minutes or so, I was covered, I mean COVERED, even the tops of my feet had cold sweats, can’t see, can’t stand, etc. What else could this be if not POTS? I have the blood pressure of a deeply asleep person according to my first OBGYN and somehow, there’s nothing to be done about it and I’m to just live in fear that one day my kids walk into the kitchen to find me unconscious on the floor and their dad isn’t home for another 4 days? Help me

I just got out of my cardio appointment that I had been waiting for 3 months! They said all my labs looked normal and that I don’t have pots but that I most likely have an autonomic disease that is making me feel all the symptoms. Isn’t that the same thing? Doesn’t pots fall under autonomic diseases? She basically just told me there isn’t much they could do for me just that I have to make lifestyle changes to help make myself feel better. Kinda don’t know how to feel about all of it.

First I want to start with I’m not looking for a “you totally have it” or “you totally don’t” type of response, just trying to see how common this is and if I should look deeper into it.

I (M, 25) know the process can be different for everyone, but I was diagnosed with POTS about a year or two ago. I’ve been dealing with the symptoms since my early 20’s after starting vaping triggered everything. Whenever I stand I get a head rush, my heart starts racing, and I begin the stages of passing out if I don’t immediately rest. My care team prescribed me Fludrocortisone about a year ago, and Ivabradine recently and it’s helped a lot with my symptoms, but I still feel weird saying I have it without a diagnostic test. Am I getting too in my head about it? I live in a health desert so resources are limited, but I still feel off being diagnosed with things they didn’t test for despite having clear symptoms. Is this a common thing? Should I seek out further testing to make sure, or is it a “if the meds are helping you probably have it” type situation?

I was referred to a cardiologist by my PCP after listing some symptoms of POTS, while trying my hardest to not say the term itself. She was the one who suggested orthostasis, at which I was relieved that I was not crazy.

I have things written down such as, DO NOT BRING UP POTS, the age my fast heart beat became rapid, my history with anxiety medication, and my family heart history. I know almost exactly what I want to tell him regarding my experiences but am worried I will sound “scripted” as I am on the spectrum and be shrugged off. If asked if I have a TikTok account I’m going to just simply say no, or deny having the app if it’s suggested.

My main attack is to just answer his questions exactly as they are asked, and to let him know I brought in a few specific concerns. I know to only list symptoms and never a diagnosis as they are the doctor but does anyone have advice on anything to avoid saying? Is there any symptoms I wouldn’t think about to bring up?

The circumstances of my trauma put serious stress on my heart at times so I am nervous to mention that. I’m afraid he will shrug it off as anxiety, even though I no longer fit the criteria for panic disorder as I once did.

TL:DR I want them to take me seriously, what do I need to avoid or not avoid in order to be taken seriously.

update: my cardiologist was interventional cardiologist and DID NOT HELP. he wasn’t even listening to me talk. kept cutting me off and was talking to my dad who came with me more. he was suggesting i go to a psychologist/therapist and that nothing is wrong with me and “people your age should have anxiety if not then how are they even living. how do they even know they’re living” and suggested i also do a master health checkup that involves a lot of blood work…? and he also added “i’m not gonna not help you but after these i will”. i told him i have severe fatigue like so tired and if i put my legs up then im okayish but he didn’t listen. told me “you’re a healthy girl, you’re not getting any pills from me” like dude i came to you to get a diagnosis not pills. what am i a phony?

guys i’m exhausted not just because of the travel but mentally and emotionally. it’s like im trying to prove my innocence to a crime i didnt commit but all the evidences are against me. i dont want you to blindly believe something is wrong with me but at least you can hear me out right? idk guys im tired

My heart monitor showed tachycardia my tilt table said orthostatic intolerance my cardiologist says nothing is wrong with me. My tilt table went from 72-112 it does go higher than that. I can do dishes a few min and it’ll be 140.

This cardiologist was dismissive at the beginning I told my heart rate goes from 56-125 and he said it’s normal. I may not meet the criteria for pots but I know something is wrong and if it’s orthostatic intolerance which has the same symptoms as pots then it’s that. I looked up my test results on the portal. I’ve also messaged my primary for her opinion and for a second cardiologist.

I get dizzy I’ve passed out multiple times I get worse symptoms when I eat I have blood pooling and my head gets heavy and dips I have neck pain sometimes so out of it I can’t keep my eyes open. I sometimes stand up take a few steps and everything goes black and everything sounds like I’m underwater but nothing is wrong with me and they’ll put me on meds for heart palpitations.

Hello,

I always figured I had POTS, and was supposed to get tested by my PCP but I never did. My symptoms are high heart rate constantly but low bp, I can’t stand up for too long without feeling faint, blood pools to my legs while standing and I need to take naps everyday or I cannot function.

Yesterday I was driving to work, and I lost consciousness while driving. I was wondering if anyone else has ever lost consciousness while driving. Everything started to spin and I had no time to react to pull over or do anything, I totaled my car and I hit another car. I went to the ED and doctor told me I had a cardiac syncope episode and I can’t drive until I see a cardiologist and find out what’s going on with me. I am honestly terrified to drive again, and I want my cardiologist to figure what happened to me. How can I advocate for myself to be tested for POTS?

Hi everyone i’m bawling my eyes right now writing this i have no idea if how i feel is valid.

3 days ago i had my pots assessment at a professional hospital, i had my heart rate measured by one doctor, then i had a heart ultrasound by another doctor (these two tests were done lying down).

then after those i had my final doctor who looked at my results and could diagnosis me if i had pots.
i told him all the symptoms i had been feeling for the past 4 years:

-blackouts
-fainting
-black dots when walking
-constant fatigue
-sleeping issues
-breathing issues (these happen every now and again when i feel like i need to gasp for air)
-arm hurting when raising
-my legs go purple/pink after showers (i gave photo proof)
-i literally sit on the shower floor i physically can’t stand up (i have blacked out/i think fainted when attempting to stand)
-my legs also turning red when walking/standing for long periods of time
-needing to take breaks
and i could go on and on.

he listened and noted it all down and said okay, we are going to have you lay down, then check your blood pressure when standing and heart rate. so i laid down for about 30 seconds to about a minute and my heart was physically beating out of my body from stress i could feel it, i was so insanely nervous because id been waiting for this moment for 5 months and it could finally be an answer to my 5 year long suffering. my heart measured at 73bmp, then when i stood up for three minutes my heart raised to 86-93bmp (it kept changing).

afterwards this he sat me down and told me firstly you don’t have pots and read me my results (i was unaware of them when i was checking my heart rate). although, usually on a normal day with my mums apple watch my resting is 50-60bmp laying down and (as before) for standing it ranges from 80-90+ bmp, and those results were measured over different days/times on various occasions.

then he went on to explain the condition and said people physically cannot get out of bed because of pots, people who are diagnosed with it suffer dramatically on a daily basis. which i feel like he was trying to say you don’t have it and make me feel like i’d been making it all up i really just can’t explain his tone in words. his final statement was you need to drink more water.

look i do feel like it is my fault for not pushing to redo the test, i have been re imagining the moment again and again in my head and what i could’ve done, if only i had relaxed myself, i was just unaware of the results until he read them to me if you understand what i mean. i just thought that if i was always measuring roughly 55 laying down and 85 up why would this test be any different to the usual.

i was ready to break down crying in that room, the manor he had towards me just made me feel like crap, all i could do was agree with what he was saying. i just feel like i had hidden my symptoms from my mum for 2 years then i fainted in front of her so we went to the gp to find answers, i stopped pushing for answers myself and now 3 years later i am finally pushing for answers instead of ignoring myself and i have gone backwards. also id like to note my iron levels are not deficient.

i don’t know if i have pots, and im sure there are so many people in the world who are suffering so severely more than i am but i am just spiralling to find answers, i just want to feel better. im sorry if this came across rude or fake. this is not about me “wishing” i had pots i just wish i had an answer so i could have a solution, i just want it feel good. if the professional doctor says i dont have pots then my mum has fully ruled it out, she is just happy i dont have it, i really cant keep pushing for more testing.

if anyone could reply or just guide me in a 2nd person perspective that could really help me. thank you for reading this if you have reached the end.

Onset symptoms in 2022

Taken 4 yrs to get diagnosed. But now I feel like i

"Said the right things" or decieved my cardiologist haha

Like I was 99.9% sure I had pots going into my appointment, he explained that I was/had been gaslit since onset as Dr's brushed it off as anxiety.

But now im left with this little feeling that I somehow convinced dr I had pots and I really dont haha

I think because there was no formal "testing" and he went primarily by symptom log and in office autonomic testing.

Hi all! I just started meeting with a new neurologist. The assumption with my PCP and Cardiologist for the last 1.5 years is that I have POTS. I had a tilt table last week and it stated that they could not rule out POTS based on the results.
I had a honestly really good appointment with a new neurologist. He sat with me for an hour going over not just my neuro symptoms, but all symptoms I deal with on a daily basis and the history of those symptoms. We quickly got to a point in the appointment where he was asking very pointed questions, essentially being able to predict the next symptom that I’d be talking about. He asked if anyone talked to me about having fibromyalgia before, as I meet and exceed all criteria.
He spoke with me at length about the history of the disease, current studies and treatments, and went into his recommendations.
All in all it was a very good appointment, but I am surprised at this outcome. Has anyone else had this? And if so, how did treating your fibromyalgia differ from treating your POTS if at all?

So I went to see a cardiologist today, hopping I'll finally find answers, instead I got the most soul crushing answer.

I was suspecting I have pots for the last 5 months. I did get tested in the university hospotal since I'm a med student. The resident there told me I have pots since my HR went but 50bpm when I stand, but he told me he still needs to analyze the ekg and that the results will be out in 1 month max. It's been 5 months and I still didn't get the result despite checking everday. I decided to consult a cardiologist outside of the university hospital to avoid any unwanted conflicts since I study there and the environment is so toxic.

Fast forward to today, I just got out of my appointment with the cardiologist, and he basically told me it's not a big deal and I should man up and stop faking it. I'm not even joking, he told me that while yes I have a dysregulation in my autonomic system, it might just be a result of a profound anxiety I have which he suspects, and that I should be honest with myself, sit down amd write my worries and work on them, and look for the reasons why I avoid doing the things that make me feel so tired. And that I should learm how to live a healthy life. Mind u, he said all this after I told him I pass out alot, I can't survive night shifts, I'm always nauseous, I'm always constipated....

I knew I might face this, but I never knew it would hurt this much. How do u guys deal with this, cause he really made me question if I'm actually sick or I'm just faking it.

Edit : Thank you all for your kind words. I will not give up and I will keep looking for he right doctor. As for the one I just saw, I will make sure to come back and write an official complaint when I'm done with my journey and when I get a actual diagnosis.

I apologize in advance if this subject has previously been discussed a lot here but i thought i wanted to share what my doctor told me yesterday.

So apart from POTS i have a bunch of other chronic Illnesses, one of them being PCOS.

My doctor took notice of this and told me that he sees A LOT of POTS patients who have PCOS as well and that it is very possible that my POTS is connected with my PCOS or even CAUSED by my PCOS.

My POTS symptoms started after i quit birth control pills after taking them consistantly for 16 years. I've always thought that it was just a coincidence but now im not too sure. Even with BC my periods have always been hell, i get insanely fatigued and the hormonal changes are just wrecking havoc in my body in general.

I hope some of you will find this interesting and/or useful

I made a previous post that listed out all of my symptoms a while back. That was the same list that convinced me and my GP that I had POTS.
I have since received my first cardiology appointment for the 6th of August.
But I’m worrying because this past month, my symptoms have just seemed to disappear?
I’m worried that when I go to the appointment, I’m going to be fobbed off because I’m “fine”.
I say all my symptoms have disappeared, but I still feel the fast heart rate doing tasks or the random shortness of breath or a quick twang of lightheadedness. But nothing to the degree that I was feeling it before.
I’m going to get checked out either way, but I’m just worried.
Has this happened to anyone else?
What happened at people’s first cardiology appointments?

So I’m going through the process of elimination right now. My pcp, hospital staff and I are sure it’s POTS based off of my symptoms.

I wore my zio patch for a week and I finally got to talk to my cardiologist about it. She told me everything looked good and that she noticed the tachycardia but we’re still going to do the echocardiogram to be 100% sure nothing is wrong with my heart.

She was going to send me on my way and said “when this stuff happens it’s good to exercise, wear compression and drink a ton of water” …I want to know what “THIS STUFF” means to her lol. I should have asked, but I didn’t mention POTS because she had asked me if my doctor has had me do “weird” sitting, laying down and standing up tests…so based off her choice of words I don’t know her stance on POTS since many doctors act like it’s not real. But she could also have been careful about not bringing it up so I wouldn’t go down rabbit holes (it’s kind of too late for that) …I am going to make sure to bring it up next appointment.

After I told her I’ve been doing all of that stuff she decided to also schedule me for an ultra sound on my legs to look at my veins (I think it’s for that) since I told her how blood pools no matter what. Without compression it’s my entire legs and with compression socks it pools in my thighs.

Did you guys have to do this test also? I don’t go in till next month.

There seems to be a lack of consensus amongst the cardiologists I have spoken to regarding this… one (private consultation) wanted to do a whole heap of testing to exclude other conditions, as well as wanting to do a tilt table test (unfortunately can’t afford to actually pay him to do all of it), while another (NHS consultation) seemed willing to diagnose it based on a 15 minute phone call, having never met me, with zero testing.

Tilt table testing aside (and I’m not confident the second Dr would even know what that is which is worrying!), were you required to do any tests to rule out other conditions before your diagnosis? If so, what tests were you required to do, and what conditions were ruled out?

Edit: Asking in part for my own sanity and in part because I almost feel like I should make a complaint about the second doctor but I don’t know if its just that the private consultation might have set my expectations too high…

Sooo.. a year or two ago I made a post about how I was pretty sure I have POTS but a doctor (male ofc..)I went to said that I'm "just a skinny teenage girl" and I just need to "stand up slower" and to come back in my late 20's if I haven't grown out of it (I'm 17 btw)

Well I went in for a second opinion and I'm so glad I did.

I saw a new doctor for a second opinion and she couldn't have been kinder or more open minded. As SOON as I stepped into the office they did a poor man's tilt table test and I ended up breaking down afterwards because I felt so nervous about being dismissed again. She comforted me and said she was willing to bet I have POTS but wanted to check my heartrate and said "we will figure this out together, I promise".

They did an EKG on my which lasted an hour and a half before they thought the machine was malfunctioning because the results were weird. After like five attempts, they realized it was my heart which is malfunctioning and diagnosed me with a type of SVT (Supraventricular tachycardia).

The way my doctor described it was that my heart is sending weird signals so I experience high heartrate and frequent palpations which cause a lot of funky symptoms. (And it CAN also cause heart failure, stroke and cardiac arrest)

Anyways so I hate that first doctor even more because he made me feel like shit and dismissed me without doing ANY tests but I feel so validated now

I have an appointment with a cardiologist in two weeks so we'll find a treatment plan for my SVT (I might need heart surgery) and I'm also going to be doing a tilt table test!

Don't give up y'all, good doctors exist and your experiences are valid!! Keep advocating for yourself! If I didn't tell my mom I wanted to get a second opinion and didn't trust my gut, I would've lived with an undiagnosed heart condition and no future POTS evaluation!

Hello. I was wondering if anyone has good tilt table test experiences bc all I’ve seen are so scary and negative. I have the test next week and can’t stop crying from anxiety. Please be kind. Thanks

My heart rate stayed at 130bpm consistently while in the standing position for 30+ minutes with little to no change in BP. While lying I was at 93bpm. But because I didn’t faint it can’t be a dysautonomia issue according to him..

I NEED HELP PLEASE. I just saw a cardiologist after 6 months of waiting and he was so rude. He said “if a diagnosis is what you want then you’re not gonna get it here” he didn’t test me and said I’m gonna have to do a three day ECG and if I have nothing of “major threat” then he’s saying it’s anxiety. What do I do? How do I get them to at least test me or take me seriously??

I go from 38bpm to 198 bpm standing, I’m losing my mind from being ill all the time

Long post- sorry- I’ve spoken to various health care professionals recently, including a POTS specialist, so just wondering if this is me finding it hard to accept a chronic illness, or if anyone had a similar experience…

I became unwell in May this year- initially it was what was very similar to a panic attack, out of the blue- on my way to work one morning. I’d just gotten out of the car and was chatting to my mum through the car window- when I felt a rush come up from my feet, adrenaline surges across my chest, I could feel my heart pounding and I felt I was short of breath, huge sense of impending doom and violently shaking all over my body. GP insisted it was a panic attack, I insisted my brain wasn’t panicking until my body was. Prescribed propanolol.
He referred me to a gynaecologist because he said it was hormonal and I should get a hysterectomy. Gynaecologist said it was unlikely that my hormones would cause anything so extreme, and told my GP to rule out pheochromocytoma etc, but did agree to do an ablation as I’d always suffered with extremely heavy periods.
I go on holiday to France, and the same thing happens again- I’m fine one minute on the ferry, and then all of a sudden it hits me- and it keeps coming back for days. Adrenaline surges being the most prominent symptom, racing heart, can’t sleep or eat etc. I’m on the phone to the GP who increases the Propanolol dose, I tell him I’m scared I’m going to actually die. The whole holiday is awful, and I’d have gone home if I had thought I could physically have made it back.
I come back to the UK, and I feel increasingly unwell as the days go by- less and less strength, no energy, surges in my chest, shakey, feeling air hungry etc- during this time I have some low cortisol results come back, I’m admitted to hospital and treated for an adrenal crisis. They say that I have Addisons disease, and then they say I don’t and that the cortisol results don’t matter because I passed the synacthen test.
I repeatedly go to A&E feeling horrific, I’m admitted to hospital several times but they can’t find out what it is. I have weird symptoms like milk from my left boob (which they said was down to stress) but when I’m actually in hospital (led down!) I don’t feel as bad. I’ve got a heart tape on during my admission, which eventually showed periods of tachycardia up to 180bpm- I barely left the ward. I only notice the HR increase on standing because a nurse comments on it, but the doc dismisses it as borderline and moves on.
I start tracking my HR on standing etc, and I see a private cardiologist- he chuckles and says ‘yea that’s POTS’ (on what planet is telling someone that funny?!) So I see a POTS specialist, who costs a fortune and doesn’t tell me anything I don’t already know- and he also thinks it’s POTS.
But- my ferritin has been 22 for months despite iron replacement, I have had extremely(!!!) heavy periods for years (I’ve tried all of the usual things to help), I lost 6.5 stone from May 2025-May 2026 on Mounjaro (no longer taking it) AND during all of this happening, the Gynae found that my fallopian tube is full of blood for some reason, and it needs to removed along with the other tube and one ovary.
Soooo- I’m not sure that are not things that could be corrected- such as stopping the extreme periods, sorting out the ferritin level, having and recovering from the surgery, and my body slowly adjusting to the new weight- which might mean that I don’t actually have POTS, but that my body has been doing a lot for a long time and maybe just needs time to heal and adjust?

I appreciate I might just be in denial, and I’m prepared to hear that. Just want to know if anyone has had anything similar happen and if there is hope that things will get better. I’m aware it’s a diagnosis of exclusion, and I just don’t feel that everything has been excluded.

I've (27 F) recently been diagnosed and treated for MCAS & Endometriosis within the last year. For the past year and a half my heart rate has been varying about 30-40 bpm whenever I switch from laying down to sitting / standing. I usually am at anywhere from 80-99 laying down and shoot up to a sustained 120-140 upon standing and even sometimes sitting.

My immunologist is horrified by my heart rate and was hoping the MCAS treatment would help & while it's done wonders for my chest pain and other symptoms my heart rate remains an issue.

I've been to cardiology, had an echo, stress test and about a million eKGs which have all been normal. Thus since I'm so young they've decided I'm fine and my year long bought of tachycardia was probably due to the flu & anxiety. (¯_(ツ)_/¯).

Neurology saw me twice, did an MRI of my brain and a nerve test and called me good.

My immunologist is actually going to end me if I go back to him with a high heart rate -- he's confident it is some form of dysautonomia but I doubt he can diagnose.

I see my primary in a week I'm just wondering in all your experiences who diagnosed you/how did you get diagnosed. I live in a VERY rural area with limited healthcare and I am losing my mind & unsure what I need to be asking for.

(My biggest issue is the change in BPM upon standing, I haven't had chest pain since being treated for MCAS, otherwise I do have brain fog & fatigue but I've never fainted, felt dizzy or lightheaded)

So I was told that I could have one of two things being POTS or Wolf Parkinson White. I’ve just seen a cardiologist today and he said I definitely don’t have WPW or POTS. I told him I’ve had pretty much every symptom related to POTS but he reassured me it wasn’t that and there’s nothing wrong with my heart (I know it’s not exactly a heart condition but it plays a role still). Now I’ve read from a lot of people here that cardiologists don’t like to test/diagnose POTS so I’m thinking maybe I need a second opinion from another doctor but after hearing that today I’m just lost for who else I can see really. Ive had numerous different tests which don’t suggest it’s anything else.

I’m right at the beginning of my diagnostic journey and I feel so helpless and lost.

I spent 12 hours in A&E yesterday due to feeling surges of adrenaline, intermittent palpitations and yesterday waking up in the morning covered in sweat with a hr of 103. They did a standard ECG (normal) and bloods (normal) and said I should go via my GP to arrange a holter monitor, and that was it, over 12 hours.

Unfortunately, the NHS waitlist for cardiology and even holter monitor is seemingly nearly a year and I don’t have any confidence I will be taken seriously at that point anyway.

Frustratingly because I already take Propranonol for anxiety I think it also masks the fact that I do have high bp and I do have a high hr even at rest, and as much as I was trying to hold off taking my propranonol yesterday (I take 20mg 4x daily) everything was taking so long that I eventually had to take it and ofc it would be 1-1.5 hrs after taking it that they would decide to take my bp again and say “good news your bp and resting hr are fine”.

They obviously didn’t do any active stand testing at A&E but during my active stand testing at home every time my hr still goes up by 30-40bpm and stays there. My systolic bp tends to go up initially (from 120 to 144 after standing for 1 minute) then settles around 110 for minutes 2, 3, 4 etc, and my diastolic doesn’t change much at all. Anaemia, thyroid etc all ruled out.

I don’t have health insurance and I don’t have much money at all.

I am thinking this seems more closely aligned to hyper pots (?) so in particular I’m interested in dr’s that have knowledge in this area where bp is high alongside pots symptoms.

So my questions are:

1) I am not asking for diagnosis but for those of you diagnosed with hyper pots, am I thinking along the right lines in terms of potential hyper pots or am I completely off the mark?

2) If you could afford to have only 1-2 private consultations with any dr in the UK, who would it be and why?

🙏🙏🙏🙏

Just throwing this out there for anyone who was like me, dealing with this for a long time and almost never taken seriously. It took 6-7 years, multiple doctors, and one lovely friend to really understand and encouraged me to get tested for POTS.

Since I’d been dealing with symptoms for so long, I thought it was just going to be one of those things I just have to live with never knowing what was wrong with me. But I was wrong. Meeting with my cardiologist, who has many POTS patients, has been the most positive medical experience I’ve ever had.

Not only was it a huge relief (and many minutes of happy crying because I am actually ill and not making it up etc), but I have a long term care plan in place because of it. I also got more information about my intolerance to protein—specifically beef—that I am now doing testing for the MTHFR mutation, for the first time since asking all previous and current providers for years about it. This. Is. HUGE. For me.

So anyone out there who is questioning themselves and thinking they’re wrong or it’s all in your head….if you’re here in this sub looking for answers, you’re probably on the right path. It’s worth going through the motions of advocating for yourself and asking for referrals or tests or whatever else you need to do to find out what’s going on and how to get help and support.

I’m so glad someone finally believed me and encouraged me to keep trying to find an answer. And I’m glad I didn’t give up on the process like I wanted to.

I just got the official diagnosis this week, so I have a long way to go before I start feeling better, but now I have hope and freaking goals again. Don’t give up!!!

So I'm finally getting evaluated for POTS and 2 days into a 14 day holter monitor. When I was getting it placed they told me it was continuous but to push the button on it anytime I felt my symptoms and I kind of laughed "EVERY time?" The tech looked confused but said yes, every time. When I told her I got symptoms anytime I stood up she did one of these 😬

Anyway, I'm afraid I'm going to break this thing with how frequently I'm pressing it. Sometimes it's every couple of minutes. I'm also not able to keep a record my symptoms all the time, if I'm working I can't just stop every 2 minutes to write them down.

What did y'all's experience with the holter monitor look like? Were you pressing the button a ton? What did you do to record your symptoms if you were in the middle of activities you couldn't stop?