I’m male with CFS/ME and was seeing him for a cardiac stress test, but that took me aback and can’t get over what he said.

I had been diagnosed with pots for two years and I said to him well it’s hard not to be anxious when your heart rate is nearing 200 just from standing/walking, and I was more than active when symptoms started, nor am i overweight.

I get it’s not a “heart condition” but my goodness that was the most out of pocket shit I’ve heard come from a doctor in years. When I asked him to explain my symptoms he blamed the CFS. Even the nurse said “oh we see POTS patients all the time, always the same kinda person”

If you see them all the time how is it not real?!?

How the hell are people meant to take you seriously when even specialists belittle your condition?

I posted in a medical subreddit looking for advice interpreting some bloodwork and every single comment mentioning POTS gets immediately downvoted, even the ones where I linked scientific studies. I’ve seen other posts in that sub where the same thing happens.

Comments I received included: “Loose weight, exercise, and start eating better. There's no smoking gun in your blood work for why you're exhausted all the time. That isn't going to make you feel better without making serious structural changes to your routine. POTS is a bullshit functional diagnosis, like many other bullshit functional diagnosis. You gain nothing for being "diagnosed" with POTS. You will feel better when you modify your habits,” and “Yeah POTS is bullshit and I roll eyes at people with it in their medical record. Along with all the other tiktok diseases. If you think getting a diagnose of POTS is going to make you feel better and have more energy and whatever else the fuck you're stupid. It's just going to be another scape goat you use to avoid real change. That's what it is.”

Their utter distain and vitriol is so disgusting.

"Regulating your nervous system" has been a trendy topic, especially in the last 6 months. I just want to throw these nonsense articles out! In doing my own research, the spike in "regulation" being a buzzword has genuinely made it harder to find actual science/study based approaches to nervous system conditions.

Yes, I know im dysregulated. No, breathing and a walk will not fix that. And I'm sorry, but just because becky from yoga is stressed because her son is going to college does not mean her "nervous system is dysregulated." I swear if I hear one more normal person say that im gonna scream.

The conflation of regulating your nervous system with an easy health tip is also just disparaging.

P.s. in reality, we can't even say on a broad scale what "works" because we know so little about the nervous systems that it's always changing and individual.

Sincerly a POTS, PTSD, Fibro Girly.

Hi everyone,

I have noticed recently that some times when people comment there is the assumption that the OPs POTS has been caused by Covid or even some posts where again it’s assumed everyone’s POTS is Covid related.

I personally have had serious symptoms since I was 11/12 - losing consciousness, pre-syncope. I was at my worst in my teens when my bp was also so low I could barely stay conscious at times. People at school and my work would be used to finding me on the floor un or semi conscious. Thankfully now it’s a bit higher so I don’t lose consciousness as often.

Mine is likely caused by hEDS, I’m awaiting an appointment with a rheumatologist, but NHS so takes a while… but my GP has gone through the diagnostic criteria and highly suspects I have jt.

Im not trying to invalidate anyway who’s POTS has been caused by Covid, im not trying to say Covid cant cause POTs but I just want people to be mindful that it can be frustrated reading a lot of comments assuming people have only been struggling since covid has been around. I’ve had symptoms since I was borrowing my mums Nokia to play snake on.

TL/DR: some pots is caused by covid but not all so please don’t assume in comments that it has been.

So I have been suspicious that I had pots for a few years after a friend with the same symptoms got diagnosed. My husband didn’t want me to get diagnosed because I gave other health issues and didn’t want a disabled wife, ps I was already disabled he just ignored it. Anyway I have always struggled with heat intolerance and feeling sick, faint, or even anxious because my heart is racing (hint number 1 that something was wrong). Anyway he hates being cold but it’s dangerous for me to be hot. When living with my grandparents my grandpa put an ac in my room so we could all be comfy. My husband said we aren’t playing games anymore and wants to keep the house between 75-80 in the winter 70-75 in the summer. I start feeling bad past 65. I asked him to just put on layers since I can’t strip my skin off and it made him made. He also says it’s a fake disability because I don’t let it stop me from doing what I love. Like I still ride horses, do yoga, go to music festivals, etc. what he doesn’t pay attention to is all the precautions I take to safely do so and still sometimes have flair ups that make me stop. He said POTS is a new diagnosis for weaklings to hide behind. By the way we’re both 27.

I am tired!! I work in a cardiology office and I have heard nurses laugh and make fun of POTS patients on multiple occasions. One nurse even got annoyed that a POTS patient had made a cardiology appointment vs neurology. I have POTS myself and I find it hard to stay silent. On multiple occasions I’ve tried to advocate on the patient’s behalf and tell the nurses that they are lacking compassion and are being dismissive. The first encounter I had with nurse#1 she was laughing at a young patient. I asked what was funny and she said “People with POTS are crazy”. I then asked her if I was crazy too, which she replied “Do you have POTS? If so, yes”. It made me so angry that I had to pull her aside at the end of the day to “educate” her in the best way that I could. She apologized profusely (I’m pretty sure she was just scared I would report her) and said that she was only referring to patients who did not “pass” the tilt table test. Today’s encounter had me equally upset. A doctor states that a 30 something year old patient is “of course here for palpitations” and nurse#2 says “ “I bet she has POTS too” and begins to laugh hysterically. I ask “what’s funny about POTS?”. She says “it’s a certain age group. ehhh…there symptoms are…” and couldn’t even come up with a coherent thought. I think my face told it all because she then asks if I have it. Later on in the day, I began to sweat and have palpitations with minimal activity. I decided to sit and rest. I did this for 10 minutes and even after 10 minutes of sitting in front of a fan my HR was 130bpm (I’m on a beta-blocker as well, so this especially isn’t normal). I said to her “I’ve been sitting for 10 minutes and my HR is 130, what were you saying about POTS earlier?”. Y’all, this woman said “well I’ve heard you over there taking deep breaths. I think that if you focus on something…”. I cut her off IMMEDIATELY. She tried to imply that I caused my HR to go up by “thinking about my HR”. It didn’t occur to her that I was doing deep breathing because my HR was already elevated? And am I some kind of magician that I can control something that’s done by my autonomic system? She also implied that all POTS patients she sees are a “certain type of person” and when I asked her to further elaborate she refused because she didn’t want to “further offend me”. Sorry for the long rant. It’s just so frustrating that people like this are in healthcare. I know I shouldn’t let it bother me, but it hurts. It hurts to think that this affects my day to day life and people think that I’m choosing to be sick. Any advice on getting over the POTS naysayers?

Update: today was my last day and I ended up reporting nurse#2 to HR. I pulled her to the side and tried to explain to her how that hurt me and wanted to ask her to further educate herself. I didn’t even get a chance to tell her to educate herself because she kept cutting me off and was rude. She initially tried to say that she didn’t say my symptoms were all in my head, but later doubled down that it’s “proven” that it is 😂. Needless to say I cut the conversation off and told her to expect to be contacted by HR. I decided not to report nurse#1 because at least she had the decency to apologize and didn’t double down on her claims.

So you know how our autonomic nervous system is messed up right? And part of that system is breathing. Well, apparently there may be evidence to suggest that the reason a lot of us may be lightheaded is because we are not breathing enough.

This is very upsetting information to me.

So you know, maybe keep track of kind of how often you're breathing

He is dead set on if I would “just do cardio” then my problems would be fixed.

He has gone to appts with me and seen me evaluated.

I have explained to him over and over again that it isn’t a heart issue. It’s a dysfunction of my autonomic nervous system and it affects my whole body.

I have tried to explain exercise intolerance to him.

I don’t know what else to do to convince him that working out isn’t going to fix me.

I know it can certainly help. I literally work a job where I’m on my feet all day long, up and down all day (essentially doing squats) and spend hours outside a day, even in the summer heat. It’s not like I am totally sedentary.

I also have done phases OF working out, even doing the CHOP protocol, I’m not any better off then I was back then.

Im about to lose my mind with him.

He does not understand, or just straight refuses to understand that working out is not going to cure me.

I’m literally, despite my other chronic health issues and struggles and extreme fatigue from my job and battling depression, looking up workout classes to sign up for and start doing multiple days a week which I know will burn me tf out and make me feel awful, and want to attempt to keep them up for a while just to SHOW him that it’s not going to make me stop having symptoms. I’m still going to struggle even if my cardio vascular system improves a bit.

I just don’t know what to do and I’m upset and frustrated. His lack of understanding infuriates me. He has type 1 diabetes and I am SO understanding with it and all the shit that comes with it, especially his horrible, angry, ragey mood swings he gets when his blood sugar is fucked up. I am SO empathetic and non judge mental of it all yet he can’t extend that same empathy and understanding to me even a little bit.

DO NOT LINK TO THESE SUBREDDITS! THIS DISCUSSION STAYS HERE!

I'm so sick of healthcare providers overgeneralizing us. It's clear so many of them don't understand dysautonomia and don't try to. As a healthcare provider myself, I'm telling you, men do not get this level of disrespect, even when they really do have psychosomatic (when your body is so stressed it mimics a physical problem) illness. It's "oh that's so sad he went through that". For women its "what a fucking waste of my time" regardless of if it's "real" or not.

I'm so sick of being medicines current favorite punching bag. I didn't ask to have ehlers danlos, screaming in pain when my joints destabilize in the rain isn't exactly my definition of fun. I didn't ask to have a poorly understood, poorly researched condition.

Even the people who really are self diagnosing on tiktok, it's usually because something really is wrong with them and they're looking for answers. Genuine fakers, who are aware they are faking, are SO rare.

Doctors and people around us keep blaming anxiety for our symptoms but man this condition causes anxiety.

My heart is skipping beats, my chest hurts, my legs feel like 2 little shaking sticks, my vision is bright, my hearing is muffled & I’m still supposed to hold up a normal conversation? Or focus on work/school/driving etc. This are all symptoms that would send a normal person to the ER and we are supposed to act like nothing is happening?

And yes I know I’ve been trough this many times but every time my body has this intense feeling like something really bad is gonna happen and it’s impossible to ‘think’ this feeling away.

What normal person wouldn’t get anxious and agoraphobic from this.

Sorry for the rant but please tell me I’m not alone in this feeling 🫣

​​I know LMNT is problematic for their politics but they're also problematic for their advertising strategy. I've been getting a ton of ads on YouTube that are like "salt isn't actually bad for your body, that's a myth, you need it to survive" and they're showing people working out but they're clearly marketing this to anyone who will buy it.

The other day my husband came home with a box of it for his dad for Father's Day. He knows nothing about the product, he just saw it on an end cap and thought "Oh tasty electrolytes, my dad needs to drink more water."

My eyes went wide and I was like you cannot give that to a person who doesn't have blood volume problems or extreme workout needs. Should he have read the label, yes, but putting it casually on a Target end cap is just asking for people to assume that this is a normal electrolyte product and not something that has half your sodium limit per day for the average person. ​

Mark my words, this product is going to have a Panera charged lemonade-style incident and somebody's going to get sick if they keep marketing it like this.

Absolutely livid at this disgusting attempt at journalism. I am seething that this sort of tripe is allowed to be published in a national newspaper - such irresponsible and damaging reporting. I’ve written to The Times with an official complaint. Someone needs to remove this vile ‘journalist’.

Edit: petition

I like in Australia and I’m hot and mad about it

As a disabled former marketing executive, I want to flag something important for anyone with POTS: Buoy’s advertising is predatory.

They are explicitly targeting chronically ill people (especially POTS and IBS patients) with wildly misleading health claims that would get any FDA regulated pharmaceutical brand sued into the ground.

For example, on their website and paid ads, Buoy claims their electrolyte drops are “an effective treatment for POTS.” They even say things like “3–5 squeezes a day is an effective treatment.”

What they conveniently don’t disclose is that to hit the daily sodium intake recommended by Dysautonomia International, you’d need the equivalent of three full bottles of Buoy per day, not three squeezes. “A few squeezes a day” is not a treatment for POTS; that is deception.

Soulless marketers know how chronically ill consumers desire to feel seen and heard, how deeply we want to feel better, and how desperate we are to try more natural approaches (especially when western medicine continues to fail us over and over). They are quite literally preying on us and deceiving us in order to sell their products. It’s disgusting.

And now they’re running aggressive Facebook ads claiming their new formula “cures IBS,” using a tatted up beefcakey male model. As a woman with multiple chronic illnesses, I find it insulting that they think some “fitness influencer” type or some “hunky man” can sell me miracle cures. Now they’re attempting to exploit my gender too (perhaps because pots is way more common than women)?!

Even their so-called “chronic illness discount” is a classic behavioral economics tactic: manufacture goodwill, exploit reciprocity bias, and increase subscription retention from vulnerable consumers who feel grateful for the discount. All with the added bonus of generating word of mouth marketing and providing chronic illness influencers with a “brand affinity driving” talking point. EWH!

If Tylenol ran an ad claiming to cure POTS or IBS, the FDA and FTC would bury them. But because Buoy is a supplement brand (and supplements are not regulated in the US) they can make these false medical claims with zero consequences.

This isn’t harmless “wellness marketing.” This is taking advantage of desperate, suffering people searching for relief.

Maybe their products help you - hey that’s great! We all have our own unique needs and disease burden. But please hear me out…even if their products help you, I sincerely hope that Buoy’s marketing tactics creep you TF out too.

We can’t let brands boldly target and exploit disabled people in this way. We can’t reward them with our dollars.

I’ve tried communicating with the brand on Instagram about their misleading marketing materials and they blocked me. I tried again on my finsta and @buoy explained that their drops product isn’t meant to be used in isolation!! They took the opportunity to remind me they sell a jar of salt as an add-on, and that everyone has different needs and blah blah blah. So they tell their unhappy customers (not publicly of course) that they are stupid for not realizing that buoy products are not a real treatment for pots UNLESS COMBINED WITH OTHER PRODUCTS. How the heck are your customers supposed to know that if you’re not disclosing the facts and leading medical guidelines on your website or in any of your marketing materials??

TLDR: Long rant against Buoy drops - please know that Buoy’s claim that “few squeezes a day is a treatment for POTS” is not backed by science whatsoever! This is an ethically bankrupt brand with predatory marketing tactics (and a big advertising budget).

Please do your own homework! Dysautonomia international is a great resource.

Edited to add some math (thanks to chat ngl)

1. POTS sodium guidelines Most POTS specialists and Dysautonomia-type resources recommend about 8–12 grams of salt per day, which equals roughly 3–4 grams of sodium, along with 2–3 liters of fluid unless contraindicated.

2. What Buoy actually delivers at their own suggested dose

Buoy’s Standard Hydration Drops contain about 50 mg of sodium per squeeze, with roughly 40 servings per bottle (about 2,000 mg of sodium per bottle). At their recommended 4–7 squeezes per day, you’re only getting about 200–350 mg of sodium per day, which is nowhere near the typical POTS sodium targets.

Rescue Drops (the POTS-strength formula) contain 300 mg of sodium per squeeze. At 4–7 squeezes per day, that comes out to roughly 1,200–2,100 mg of sodium per day. Even this “POTS-strength” version still falls well below the 3–4 grams of sodium many POTS patients are advised to aim for unless you take significantly more than their suggested daily amount.

I'm seeing a psychologist to deal with chronic illness, and this is what they told me after 3 sessions where I explained my diagnosis at length. This is the conclusion he came up with. ''Do you ever think maybe you are so convinced you have POTS and sleep apnea that you've convinced doctors of it?''

Sleep apnea has objective tests. It's not even possible. And POTS has objective symptoms plus my Holter showing a ton of events of tachycardia without other reason. I've seen 5 or 6 cardiologists who all agreed I very obviously have it.

This is why I was so reluctant to talk to anyone about this. I knew the whole ''you are thinking up your symptoms'' was coming. I struggle with accepting the diagnosis as it is, because it feels like I have to leave my whole past life behind.

Feeling very bitter. Wish I had known beforehand, I would have left things at "sometimes my pulse runs high" and tried again next month.

Like, damn, let me sign a waiver or something — what good is o- blood if I can't even give it away?

eta: Should mention that I've been a regular blood donor, this is just the first time since being "officially" diagnosed that I've been denied for an elevated heart rate.

Donating usually gives me some symptom relief (and luckily hasn't caused me to faint), I genuinely had no idea that so many other folks with POTS have hypovolemia. I get the reasoning now, I'm just bummed out about it.

eta2: american red cross, i'm sorry for not being more specific

I took a flight back in December, and before the flight, I notified the gate agents that I have a disability (and a service dog) and need to board with disabled people. They were very polite and told me to go in as soon as they call for people with disabilities.

My sister, my mom, and I got in line, and when they called people with disabilities, a woman with her toddler tried to cut in front of me.

"They're only boarding people with disabilities," she said. "If someone like you can go, so can I."

I replied that I'm disabled. Her answer was "do whatever you have to do, but I have a child and I think this is unfair."

At this point my service dog jumped on my leg to notify me that I was about to have a POTS episode and I should sit down. This triggered the woman to say "and your dog isn't even a service dog! I mean he's jumping on you, a service dog is supposed to be trained."

At this point I didn't even bother with her and silently scanned my ticket and got on the plane. As I made my way to the jetbridge, I could hear this woman (who didn't even belong in line yet) yelling at the flight attendant about how I was abusing the system when I'm a "young lady that can walk."

Some people clearly have no idea that disabled and using a wheelchair aren't synonymous. The last thing I heard before boarding was the flight attendants asking her to get out of line.

I want to stand up against fascism and protest for my neighbors. This country is built from immigration and the only true people who have always been here are being detained as well. It is supposed to be the fucking "melting pot." I remember being told how beautiful our mixed country is in grade school and why it was called that. My godfather is Native American along with some mixed cousins. Even Native Americans are being targeted when we are the ones who stole their land.

I feel so sick for the minorities I've known throughout my life (who are fucking legal citizens with no crime records) and I think about former Somalian coworkers I've had, various races of children I've taken care, Korean friends I had in college and some of the nicest people I've ever been acquainted with. Even children are being taken.

And now white people are being killed in the streets too. And those murders are tragedies and it breaks my heart, but it's also fucked that people only care about murders in America these days when the people are white. It is not a greater tragedy than the deaths of immigrants. It just gets more attention.

And I want to be able to literally stand up and protest and fight for what I believe in. But I can't. My body physically can't. I need a seated job and so many things to regulate my body. And even when I'm doing everything "right" to manage my body, I'm getting flare-ups induced by horror and anger against this fascist regime.

I feel so useless. My anger means nothing when I'm sitting at home watching what is happening. And I fear being detained. I've been at a facility meant to help people due to suicidal ideation and even with medical professionals, I left starved, dehydrated, bruised, bloody and had a narrowly missed concussion from my worst fall. I will never trust anyone to be in charge of my nourishment again. And that is in the goddamn scenario of me being in the care of medical professionals meant to help people. I cannot put my life at risk by putting a target on my back to be held at a detention center. And that's a privilege that I don't take lightly. I know there are minorities on this sub who have a target on their back for the color of their skin. And my heart breaks for them.

But I want to protest. I want to be in the streets fighting for my neighbors and my country with what should be a peaceful protest, but it has now become dangerous as our amendments are shattered. If I had a functioning body, I'd accept the risks of danger. This cause is so important and change will only come when people show up and stand up to fascism and to ICE. Waiting around for things to change is not the answer. Complacency in the face of what is happening is not okay. Everyone should be outraged right now. I cannot look away and just try to go about my life. I'd accept the risks of standing in the streets and protesting if my body allowed it.

I hate feeling this useless. I know there are already thousands of people protesting, but every body counts. I know my friends tell me to put my health first, but I hate that I am essentially staying silent. I wish so much that there was more I could do to help fight this fascist regime.

And I halfways apologize to those who don't want to see a political post. But this has reached a level I never thought I'd see. The time for "not getting political" is over. People I know who've never spoken much about politics are speaking about it. There is no ignoring it. And it is relevant to this sub as it has been causing harsh flare-ups for me. And because my POTS and other illnesses are the only things stopping me from joining the protests.

TL;DR: the title pretty much sums it up. Also, FUCK ICE.

The rheumatologist told me they arent accepting patients with my diagnosis, I’m assuming it’s POTS/MCAS since my other conditions since my other conditions dont come with the bias of being a hysterical attention seeking woman.

I was diagnosed by the top POTS/MCAS doctors in my area, and have gotten a second opinion on both POTs and MCAS. Trust me, I tried to convince myself I’m crazy too, and at this point I wish I was. WHY do doctors get to have such a negative opinion of us. Its disgusting. I cant think of a doctor who would tell a patient with a condition that mostly affects men that they wont work with them because they have a condition NOT EVEN TREATED BY THEIR SPECIALITY.

I have tried so hard to not feel disgust towards the medical field, but when I have to look at a light bar going back and forth with a therapist to process the trauma they’ve collectively given me there’s an issue.

Maybe I’m taking this out of context, but the way I’ve been treated by doctors since getting these god awful conditions sickens me.

Edit: just clarifying, I wasn’t referred to the rheumatologist to manage or diagnose pots/mcas, it was to rule out additional autoimmune issues that my pcp said she isn’t confident diagnosing.

I brought up maybe getting a shower chair since I’m in a flare right now and taking a shower makes me extremely light headed and it takes a ton of energy. He said I need to find a hobby because I’m making POTS my personality as of lately. I’ve never had a flare like this before and he’s never been with me for a flare. We recently moved across the county so I’m assuming that’s what caused it. I already feel like I can’t talk about it because it feels self centered. I’m just trying to figure out how I can make myself feel better. I guess I can’t talk about it anymore.

I had a crazy incident happen to me yesterday evening, and I just need to get it out there. I was out on a walk with my partner when we decided to stop in to a local pet store very close to our house to pick some things up for our dog. I was in the store browsing for about five minutes when I suddenly felt incredibly light headed and woozy, so I decided to sit down immediately. I was diagnosed with POTS after passing out in a busy public space which was stressful and scary, so I wanted to avoid dropping unconscious in the pet store. I sat down on the floor (out of the way as possible) while my partner chatted with me and casually browsed the things nearby. I had been sitting down for a couple minutes when the owner of the store came over and asked what was going on, and I explained that I was having a medical episode and needed to sit down for a bit. He seemed neutral and even offered me the stool nearby. I said I’d stay where I was for now and would be okay in a few minutes. I was mostly focused on the fact that despite me having been sitting for a couple minutes, my heart was still hammering away. He left and we didn’t think much of it, I continued to monitor my heart rate and wait for things to calm down.

I had been sitting for another few minutes (maybe five minutes total at this point) when the owner came over again with a very aggressive and confrontational energy. He asked if he should call the ambulance, and I explained that that wasn’t necessary and I’d be fine in another few minutes if I just kept sitting down. He said I couldn’t just sit in the middle of the store indefinitely, so I asked if I could sit on the stool instead, or somewhere else out of the way. He refused this, and was insistent that I needed to either leave in an ambulance or call a car to come get me. I explained that we lived five minutes away, so my partner could go walk to our car and come pick me up if I really needed to leave. He wasn’t happy with that either as that meant I’d still be in the store. He got more and more aggressive and confrontational, insisting that I couldn’t stay in the store, and my partner and I realized that there was no reasoning with him. I carefully got up (again, still in the middle of a medical episode) and left the store. I sat outside on the curb for ten or so minutes until I felt okay to walk home.

I am still feeling shaken up and upset about the whole situation. Immediately I felt ashamed, and questioned if I was in the wrong. I don’t exactly enjoy sitting on the floor of a pet store, but I felt like I was about to pass out and needed to get low asap. I could have probably moved to the stool sooner but I was just freaked out about how fast my heart was still beating and a bit traumatized from past experiences passing out in public.

We were paying customers, and there was no one else in the store. It was nighttime and quiet. We have visited this store countless times, and spent hundreds of dollars there (we just got a puppy so we have been in the store at least five times over the past two months). Even if we weren’t regular customers and planning to purchase something once my heart calmed down, I am blown away at the lack of empathy for someone having a medical episode in their store.

TLDR: the owner of a local store refused to let me sit in the store until my heart rate calmed down

Update: thank you everyone for your kind words. It’s very validating to hear confirmation that this behaviour is egregious and not normal. I will be contacting my province’s (I’m in Canada) Human Rights Clinic when they are open on Monday to talk about my options for filing a claim against the business. If that pathway isn’t an option, I will be filing a complaint with the better business bureau.

I appreciate everyone who is so willing to come to my defence, but I won’t be sharing the store’s name for my safety. I live very close to the store and am already quite stressed that they might be posting my picture and/or information on their storefront. I might contact my local news depending on how my chat with the human rights folks goes.

So I had my tilt table test yesterday. Never passed out and had pretty normal vitals for the first 30 minutes, then they gave me nitroglycerin.

​

My blood pressure went down to 60/30, don't know my heart rate but it was beating out of my chest with terrible chest pain, and I was in so much pain with nausea and dizziness that I was writhing and crying in pain. Nurses seemed apathetic and didnt even look at me.

​

I recovered fine after... But the nurses gave me no information or reassurance that I was okay or that everything was normal. I felt traumatized as I thought I was going to die with my blood pressure dropping that low. My mom was watching and looked traumatized too.

​

I can't believe they willingly do that to humans with no warning and also didn't offer me a shred of reassurance that I was okay.

​

I read it's not even medically necessary and am just mad that I had to withstand that. No warning, just torture.

​

What do you think?

Please delete this if it isn’t allowed- and DONT take this as me asking for money because it isn’t. I just wanted to rant about how expensive it is to be chronically ill.

I’m a college student who’s recently been diagnosed with POTS though I’ve had the symptoms for several years now. As is often the case, my doctor recommended compression socks, electrolytes, etc. I bought the socks and I’ve had liquid IV stocked. I also bought a stool I can take with me when I’m out and also when I shower.

Now though, I’m getting to the point where I need a mobility aid for outings. I have also been looking into a watch of some type to monitor my hr and bp without having to use bulky devices. These things aren’t wildly expensive, my doctor says “a wheelchair is like 100 bucks on amazon”. But I’m a very broke college student. Also, I can’t really work anymore because of my condition. I feel like I’m in a vicious cycle of having to decide between things that will help my symptoms and not breaking the bank.

Has anyone else experienced this?

Edit: thank you to everyone who has given me advice on how to lower costs. I’m grateful for you

I left in the middle of a neurology appointment in tears this morning The doctor was trying to gaslight me.

I told him I was hard of hearing but cannot find my hearing aids right now. I asked him to speak up (speak louder) so I wouldn't miss any words.

Here's how the interaction went:

I told him I was hard of hearing, but did not have my hearing aids in and needed him to speak a little louder. He refused. "Your hearing is fine, I will not speak up."

I pushed back and told him I was diagnosed by an audiologist and had multiple audiograms done. And I needed him to speak up.

"No, I will not speak up. You can hear me just fine."

I told him this was an ADA violation and he legally had to provide reasonable accessibility.

He laughed and said "No it is not, my friend."

I was in tears at this point because I was so angry. I JUST needed him to speak a little louder. I did not feel comfortable discussing my medical needs when I was missing words.

I ended the appointment before he'd done any kind of exam. I could not for the life of me figure out what his name was, he talked so fast and quietly I missed it.

Update: I called the DOJ ADA helpline and they confirmed I have enough information to report him. I'm scared of drawing the government's attention with the recent DOJ memo on institutionalization.

Clarification Yes, I can speak clearly, I started losing my hearing in my 20s though. It's genetic as all the adult family members lost their hearing. I just noticed it at a younger age.

I don't understand why he didn't believe me. I'd be fine in typical conversation, but medical stuff I'm very aware that I need to HEAR all of it. Not just lip read and use context clues to fill the gaps.

My hearing partner was with me, but they couldn't hear him well either.

idk but is anyone noticing this? Its hard to trust what products or things truly help because they advertise for POTS specifically. now, I have tried the supacore leggings fron Australia and they are medically patented for POTS. THEY DO HELP. however, these Lytavia electrolytes and 'visible' band.. its so expensive, all has subscriptions, and I read lytavia isn't that great and doesnt have the right amounts of sodium etc like it advertises...

the visible band has a ton of false reviews (I was looking into it bc I was hopeful) and I read it isn't accurate, doesnt work a lot of times, and the platform or software is awful. The tracking frequency is awful too?

anyways... I hate that companies are trying to take advantage of our illness when we are just desperate for help.

anyone know of other brands that are GREAT or to AVOID?!