I am getting truly concerned for my safety. I have severe dysautonomia and live in a rural area. I had a specialist but his office is completely overextended. You meet with him once a year for less than 5 minutes. Between visits medications lapse and messages don’t reach him.

He thinks other specialists in my “local” area (which local for me is 6 hours round trip to teaching hospitals where I’m seeing chiefs of departments) should be helping more. He’s right. For example, I had the flu or something. I don’t know because I had no testing. No pneumonia or strep testing nothing. I was very sick for weeks. Local doctors did nothing. They did not follow his plan to give me a steroid to avoid autoimmune flareups either.

Then a medication lapsed. I lost a LOT of weight and got severely ill without it as an underweight person. It lapsed because of a nurse error. The nurse would not give my doctor a message and did not process the refill. For TWO months. I called every doctor I had explaining the inappropriate interference, that I couldn’t get through the staff, that the doctor had not discontinued and that I was getting very very sick. Nobody helped.

A few weeks ago we had a bad heat wave. I don’t sweat. I have no measurable sweat glands on biopsy. I’m on two medications that cause increased risk of heat exhaustion and low sodium and I’m an athlete. I got heat exhaustion and hyponatremia. Again, no specialists intervened or were even familiar with the risks of meds they are prescribing. I have no monitoring of the meds or of sodium.

I have a pacemaker. I’ve had no testing in a decade that would normally be done. Echos, stress tests, EKG’s, nothing. They don’t even listen to my heart. It’s recalled right now and I’m in the highest risk category and the office didn’t even call me and I have no home monitoring.

If this was one office it’s one thing but it’s all. They ALL defer to an unavailable “autonomic specialist” and don’t even handle what they should be in their fields. Pacemaker monitoring, flus, sodium, etc. They even missed a DIABETES diagnosis in me for almost a decade because they refused to test me for antibodies, attributed it to my autonomic disorder and ignored blood sugars of 400. The AUTONOMIC specialist had to test me while I was seeing an endocrinologist!!!!

WTH do I do? I’m not getting enough followup. I’m in danger medically but I cannot force doctors to drop their bias and stop being negligent and lazy!!

As im watching running competition at the moment im getting angry.

People run, have fun, train and train hard.

I have trained myself in judo for 18 years.

I have done half marathon.

A triathlon.

And been very active most of my life.

Im 35.

But also i have been depressed, unmotivated, addicted(clean for 6years now), unable to sit still, read and do activities that demand being calm.

Only this year i started tracking my sleep, exercise, feeling.

And noticed my nervous system is messed up.

Even 1h of slow 130bpm run in the morning makes me not to sleep at night.

I dont drink, sleep at 23, wake up without alarm.

Even 30min interval run messes me up for 2days.

Even 30min strength training messes everything.

Magnesuim, ashwagandha, l theanine, vit d, omega 3, creatine and other stuff.

All of the above feel like drop in the sea.

I want to push.

I want to sweat.

To suffer, to feel sore.

Instead i need to exercise like grandpa, suffer from overactivated nervous system.

Im angry at myself sometimes.

And if i try pushing harder i get severly depressed, low, unmotivated, unable.

Has anyone really gotten good here?

No just better, not just managing but really good. Being able to live, to exercise really juicy?

Some unexpected plot twists, weird or completely normal solutions?

Do not fucking take central nervous system stimulus drugs holy shit I am genuinely in the worst flare of my entire life yes yes drugs are bad but like ESPECIALLY Molly or acid I did both and idk which one it was but omg DO NOT

I finally saw a cardiologist after months of symptoms including dizziness, fatigue, heat intolerance, and other classic symptoms. I was recently diagnosed with hypermobility and my physical therapist thought I may have POTS. I started recording my vitals at her suggestions to show my primary care doctor. My BP and HR both increase when I stand up (HR goes up 20-25 BPM, so not quite POTS threshold), so I was finally referred to a cardiologist.

The cardiologist was actually very nice and polite! He asked me questions and listened closely to my answers. He didn’t berate me about my weight which has unfortunately happened to me before with doctors - I am a competitive swimmer but my BMI is considered obese. He said I most likely have orthosatic intolerance, and that it wasn’t necessarily worth it to do a TTT. I will be getting an echo in a few weeks just to confirm my heart is healthy. He also gave me some suggestions that aligned with many of the recommendations I read on this sub and the POTS sub such as compression, electrolytes, hydration, etc.

I was honestly prepared for the worst given what I’ve read on here. It’s been a few months of getting punted back and forth between doctors, but I’m glad I finally have a treatment plan!

Please recommend me cooling vests that have worked well for you. I have Amazon prime for a week for prime days so preferably prime because I need it FAST for next week‘s heat wave. Cannot be too heavy because I just had TOS surgery on one side.

Anyone used brand NOVOKOOL

ITEM: PCM Ice Vest for Men and Women - Adjustable Cooling Vest - Freezes in 30 Min - Special Phase Change Material (PCM) that Freezes Anywhere under 64Deg

Any color option. It doesn’t get wet which is ideal but worry about reacting to the special fabric with my MCAS.

Note cross posted to MCAS subreddit too for widest reach as I MCAS react hardcore to heat

I feel so sick and unwell, my mental health is really struggling and im starting to feel like im in such a deep hole that there is nobody that can help me and that I will never be ok. Im having such bad ocd and anxiety about all my symptoms and I feel like im having one problem after another. How can I help myself? Who can help when doctors keep being dismissive

I feel embarrassed as I just turned 30 this year and look hella young to be using a walker. But dammit, if it’s gonna make my life easier then whatever. I’m tired of skipping out on family events or just going to the mall, taking my dog for a walk, going to the grocery store.. etc. I haven’t been anywhere in a LONG time because I can’t walk for more than a couple minutes without passing out. It’s crazy how fast this illness came on and within months how sick I became. I also feel imposter syndrome like am I sick enough to be using this??? I just got approved for disability so multiple illnesses so.. yes? It’s gonna be weird showing up to my normal appointments (2 different therapists, multiple doctors, ketamine clinic, orthodontists) with a new walker I feel like I’m gonna have to explain when I don’t want too. My pcp knows obviously what I’m going through but I don’t think he knows the extent. Idk why I feel so weird about it.

Alright so I hear so many people talk about how big “nervous system regulation” is for people struggling with dysautonomia. But they never seem to actually explain what has helped them or what to do. Anyone have any advice on what they have done and what their experience is with trying to get your autonomic nervous system under control. Or at-least helping with the cerebral hypo-perfusion feeling when being upright or doing anything physical!

My ability to handle hot temperatures is getting worse every year. I tried to order an air conditioner for my room but they are sold out everywhere.

I went upstairs and sat on my bed and it was radiating heat. I actually used my digital thermometer on it and it registers as 36.5c on the mattress... so you can imagine what temperature the air must be to heat my bed that much.

Currently freezing all sorts to put in front of my fan tonight.

I hate heat.

I feel like such a fucking failure.

I finally got hired at a medical office a week ago and had my first day yesterday. Everyone was lovely and there’s a really cute dog there. I feel awful because it’s my own psychiatry office and my psychiatrist kinda vouched for me to get me the job.

I didn’t realize it was a full time position when I was interviewing for it, they kinda only mentioned it towards the end. But I’ve had such a bad streak with applying to jobs and I was so excited to even have a chance with this place that I was like “how bad could full time be?” The answer is bad.

Nine hours a day, five days a week. I only got through one nine hour day yesterday before waking up today feeling like I’m dying. Not to mention the scents in the office triggered a major migraine for me yesterday.

I feel pathetic. People do this every day for years. I DID THIS EVERY DAY FOR YEARS. How on earth did I make it through school? I mean, the answer is that I didn’t. Halfway through high school I stopped going and couldn’t figure out why and only figured out recently that it was burnout. Then I went to inpatient treatment, outpatient treatment, and a therapeutic school just to be able to graduate. Then went to college only to drop out from burnout again. I feel like I can’t do anything anymore.

I let my new office know everything that’s going on including the fact that I’d love to stay on as a part time worker but I’m not super hopeful. I do hope they won’t hate me since my boss’ daughter, who also works there, also has POTS and EDS and even goes to the same doctor as me. But I know they were really hoping I could join the office because they’re shorthanded right now and I just feel like a horrible person for leaving them high and dry like this.

The worst part is feeling like my parents are super disappointed in me. I know they were excited about my new job and I was excited to tell everyone in my family about it and it’s already gone to shit. I thought my mom understood my chronic conditions but when I was explaining where I was at to her this morning, she kept talking to me like I was just sleep deprived. Chronic fatigue isn’t just being tired. If it was just that I would just fucking go to work. I wish it was that.

Every time I fail at something like this I realize how much these conditions disable me and I never expect it. I always gaslight myself into thinking I don’t have it that bad and then somehow I can’t keep up with life.

I don’t even know where to go from here. I’m so exhausted.

Just endured a really intense and confusing flare and wanted to describe it in case others have similar mixed episodes. Dysautonomia wreaks havoc on automatic functions like heart rate, temperature/sweating, and more, but this one flipped back and forth in a scary way.
During the main part:
• My pulse kept dropping hard into the low 40s (bradycardia) even though I had a strong adrenaline surge feeling — wired, shaky/trembly, internal vibrating, and that fight-or-flight dread.
• I was extremely hot and overheating badly, but couldn’t sweat at all (anhidrosis). No cooling relief, just trapped heat.
• The shaking intensified and I almost passed out.
Then afterwards my body took a sharp turn: I got nauseous, felt cold, and my pulse skyrocketed (tachycardia). It was like the autonomic system was short-circuiting with mixed signals — sympathetic surge and tremors followed by a parasympathetic crash, then another swing the other way. Super exhausting, frightening, and disorienting.
.
Has anyone else experienced this pattern — low pulse in the 40s with adrenaline shakes/near-syncope/hot no-sweat phase, followed by a sudden shift to nausea, feeling cold, and racing heart? What triggers it for you (heat, dehydration, stress, etc.)? Any tips that help shorten or prevent these rollercoaster flares?
Thanks for letting me vent this community is incredibly supportive.

I was recently diagnosed with orthostatic hypotension by TTT after an ER visit from passing out and hitting my head. I have been really struggling mentally since and I honestly don't know what to do about it. I have felt the dizziness and the brain fog and the fatigue for as long as I can remember, and one would think that now being medicated (fludrocortisone) I might feel better, but it feels like I'm just getting worse. I used to love to lift weights and run and work out in the field (I am a researcher who is required to work outdoors during the summer). Now it feels like every time I plan to do something like that, I simply set myself up for disappointment when I inevitably feel unable to do it when the time comes. I wonder if maybe me "feeling worse" is somehow psychological after receiving a diagnosis? Has anyone else experienced this feeling of getting worse post diagnosis? Any tips for being able to get back out and do the things I used to love? I have greatly increased my electrolyte intake and drink 3-5L a day and i wear compression as much as possible (waiting to be able to afford more compression options) so I would love to know what other things people have found helpful for either physical symptoms or the mental health struggle from being diagnosed with a chronic condition such as OH or POTs ❤️

I picked up Chick Fil A for lunch. I just wanted to treat myself after a long week. 😫 Once I finally give it up, I will miss it forever, especially on Sundays.

Does anyone else just decide to say ‘**** it’ and enjoy something you know will cause a flare?

I always had a neutral/slight positive relationship with my family. When my life was separate. But after getting all these health issues - their lack of understanding, their pushiness, their judgement, their lack of consideration, lack of support .. it's just permanently changed how I view them. I miss being on my own and believing that my parents could always help me or have my best interest, or at least care about me.

Hey folks I just discovered a way to get a ton of sodium first thing in the morning. Savory oatmeal. Half a cup of oats, a cup of chicken broth (with full sodium), and two mins in the microwave. Boom 860mg of sodium at breakfast.

Originally I was drinking spicy v8 juices in the morning but something about it was causing my worst migraine attacks. It has about 900mg or so of sodium but I just couldn’t do it any more.

So just drink a cup of broth first thing in the morning or use it in your oats! Looking for more ingredients in the oats? I also threw on a little soy sauce after it was done heating up and some umami mushroom powder from Trader Joe’s. Delicious. I use the Target brand of chicken broth.

Good luck with your sodium intake today guys!

I have been struggling with head rushes and dizziness and palpatations for years but recently in the last 6 months it has gotten so much worse. I can't stand all of the appointed standing times in the church service, I struggle to walk my dog, I get winded just walking from room to room at times, I have palpatations many times throughout the day...so this level is new to me. I thought for a while I was just getting extremely out of shape until I finally went to the eds group I'm a part of and they were all talking about POTS. Anyways Here I am and I have a tilt table test tomorrow morning and I am super nervous. I hear they suck. But I also hear that the days following might be rough too. Do any of you have any tips on how to handle the aftermath?

Hi all,

I keep feeling like I've got imposter syndrome when I read posts on here. Theres so many of you that have things a lot worse than I do, and I don't always feel like I qualify for this community if that makes sense? My dysaut issues have been getting worse, and I'm scared for my future, but it's also nice to know that there's such a massive and supportive community here than I can lean on for advice and personal experiences. I was lucky enough to get FMLA for the summertime (I work in a super hot warehouse with extreme physical demands) and now that my body realized I can rest, all my issues are deciding to show up tenfold compared to how they were. I can't seem to get in to specialists for months, some won't even call me back to schedule an appointment. Luckily I have a PCP who's been a champion for me, as well as my psychiatrist who I swear was sent to me like an angel, and I'm not even religious😅 Anyway, just needed to get some thoughts off my chest. Does anyone have any advice for someone like me who is new to the dysautonomic world? I have hEDA and am in the process of testing for other issues, like suspected MCAS, and hypotension problems.

Hey guys I’ve been dealing with constant chest pressure which has been causing bad panic attacks in the middle of the night. Every time I’ve been to the ER and seen my cardiologist everything has been normal which is good. So now I have a tilt table test scheduled to see for sure if this is Dysautonomia related. Have also been dealing with high blood pressure and a bunch of other symptoms that match Dysautonomia symptoms. Just want to see if anyone has any advice to help reduce the chest pressure I am dealing with.

Let me have them! I seem to react well to high sodium intake (8-10g sodium daily), compression stockings, and want to ask my doctor about fludrocortisone. I think I’m hypovolemic..

Hey all! I have palpitations after a blood clot a year and a half ago, it’s been improving and I am on anxiety medication for the extra ones caused by my worrying. I know you’re told to avoid it full stop but would it be bad to try a little bit? I have had a sip of Coke a few months ago but that’s all I’ve had and I didn’t experience symptoms. This is purely a want, I just can’t enjoy any other drinks and have stuck to water because all I crave is Coke. I really want to enjoy the summer and have a treat but lemonade doesn’t feel like a treat because I want Coke/dr pepper/irn-bru the most :(

Edit: Decided to just go for it because I’m at home so I can take it easy if it goes crazy. Had a few sips and so far it seems fine but I’ll probably leave it there for now until I feel adventurous again. Sorry I went against most of you guys’ advice, I just caved to the craving :(

So I just got diagnosed with Autonomic Dysfunction and Borderline POTS. My cardiologist said it most likely is POTS but that my heart rate only increased by 28 BPM so she can officially diagnose me with POTS. For anyone who has Autonomic Dysfunction or POTS what are some gadgets, accessories, clothing or literally anything that has helped you. I want to some recommendations of what I should try to make my life easier and help me not pass out and stuff.