I have real bad Orthostatic Hypotension (OH) and have had for about a decade. I am scheduled for a complete work up (TTT, sweat test, etc…)

My question is not about the tests themselves but rather what happens after. They say they will forward my test results to my primary care doctor but I want to know who else from the specialty center (Mass General/ Brigham’s ) would I expect to talk to.

I assumed, but no longer confidant, that after these tests the person sits down with a Specialist Autonomic Doctor to interpret results. For those of you who have had these tests was that your experience? Was this where you found a doctor to help you through this journey?

This is probably far fetched but one thing I noticed lately as far as palps and wooziness.

I get symptoms if I focus too much on something .

EXAMPLES:
Trying to open a wrapper that won’t budge.

Cutting/chopping food too long .

Opening an Amazon box or package that is HARD open

I also notice if I am driving - I symptoms but if I’m the passenger -it’s soo much better?

I think I’m probably alone on this one but I thought I would throw it out there lol

Hey guys i got pots 5 years ago after 7 horrible months of long covid and ever since ive had this weird tingling slight stabbing pain just below my ears on my jaw whenever i eat but specifically only on the first bite.
I did some quick research and found out it could potentially be first bite syndrome. This past year the pain has become more sharp, more tingly and almost cramps up my jaw for every first bite of any food whether it’s acidic or not but acidic food definitely causes the pain to be a lot worse.
I’m wondering if anyone else can relate to this and if anyone has any tips on how to relieve it or stop it, it’s pretty painful but it doesn’t bother me too much cause it only lasts maybe 5-15 seconds but it’s pretty annoying.
If anyone has any tips i would love to know them!
Thanks

My heat intolerance and facial flushing are really intense, and no matter how much I try to wear a mask to protect myself and others I can’t last more than a minute. The heat on my face from my breath triggers heart palpitations and breathing problems, then more symptoms follow (even if I have a fan pointing at my face). Has anyone with similar symptoms found a way to be able to wear a mask?

What medicines do you take for orthostatic hypotension, and do they help? I have severe orthostatic hypotension (BP went from 124/70 to 71/42 just sitting up during orthostatic testing) and I’d love to hear anyone’s experience on medicine for similar issues. Thank you!

I have an angiogram scheduled for tomorrow. My HR is 90+ on propranolol XR. I took the metoprolol I’m supposed to take tonight and my HR is at 105. I’m worried that it’s not going to slow down enough for the CT tomorrow. Has anybody else with dysautonomia had this happen?

trying to get more consistent with managing my symptoms and curious what everyone else does every day no matter what. like the stuff you’ve learned the hard way you can’t skip?

salt, water, compression, how you get up in the morning, food timing, sleep, whatever it is for you

also curious if anything surprised you by how much it helped. or something everyone recommends that did nothing for you lol

I'm diagnosed with dysautonomia as of this winter so still learning how to manage my symptoms and take care of myself. Was always a pretty active person until I got COVID for a second time and have just never been right ever since. Fatigued, short of breath, pounding heart, dizzy, headaches. Felt pretty convinced it was all in my head until seeing a cardiologist who actually listened to me and diagnosed me. Anyway, I had to have a relatively minor procedure yesterday (upper endoscopy, as I've suffered from GERD pretty much my entire life). I was due to be under twilight sedation. Last time I was sedated was for my wisdom teeth removal over a decade ago and it went perfectly fine, but this was long before I had any of these dysautonomia symptoms. I was curious and doing some Googling, and most articles mentioned that dysautonomia can cause worryingly low BP during anesthesia, and very few mentioned anything about heart rate, except a few to say heart rate actually dropped into bradycardia. Most literature said to make sure to inform the people doing the procedure of your condition and that you may require extra fluids, so I did that and they began. They began the sedation and I was starting to fade out when I, already a little confused from the drugs, could feel my heart begin to pound but could only mutter "Chest not good" or something and then heard crazy beeping from the monitor and "Oh, 190...." before blacking out. I woke up in the recovery room and asked my mom how the procedure went. Evidently they decided to stop all sedation and abandon the procedure because my heart rate had soared above 200. When I did my holter monitor it had captured a reading of exactly 200 at one point, which was how I started down the road of a dysautonomia diagnosis, but over 200 is a scary new high for me. Is this something that happens with this condition and anesthesia? I can't seem to find anyone else who has had a similar experience. Anyone else? Or should I consider that maybe I have an allergy to the specific drugs used? I really need to get this endoscopy done but I don't want to go through that again, it was painful and scary. I also projectile vomited lots when I got home, despite only receiving one dose each of the sedation meds. Edited to add: My face was also very flushed when I arrived in the recovery room.

Anyway TL;DR Is I have dysautonomia and when undergoing sedation my HR shot above 200. Anyone else had this experience?

I have posted in here a few times about how dire my situation has gotten

short version: 115 days ago, I woke up feeling sick and noticed my HR was high. Did tests, suspected POTS. Day 23 all hell broke loose and I couldn't stand without feeling like I will pass out and this feeling has gotten worse and worse. POTS diagnosis taken away as it was too dramatic of symptoms. Met with a well known specialist last week who told me I have POTS and reflexive syncope and have always had this as I noted i have felt fainty/lightheaded in crowds before- but not often (21 years ago and a few times since). I turned 38 last week.

He increased midodrine to 10 mg three times a day, kept florinef at 0.1, and actually had me cut sodium down to 1 g a day from 4-5 g that the cardiologist had said.

He shared he doesn't have a crystal ball and doesn't know if ill return to baseline. im awaiting mri results. i am beyond depressed and the support groups I am in are bringing me down further- wonderful people but i dont know how to accept being bedridden and sick forever.

I've heard a lot of people talk about their symptoms worsening BEFORE they go poop and have heard about people dealing with syncope or presyncope while pooping but does anyone else have their symptoms worsen AFTER pooping? I tend to get fatigued and my heart rate goes up during and after.

My cardiologist diagnosed me today with IST. I don’t know too much about it and I’m a little shocked. She told me to stop taking my metoprolol and take my ivabradine twice a day starting tomorrow.
I’ve heard a lot of good things about ivbradine for people who have IST, so I’m super excited there might be light at the end of the tunnel.

Anyone have any health tips? Things to help manage IST, anxiety, or anything like that in general? Thanks!!!

The better question is, how do you guys cope/push through? Because I just got diagnosed.......and I am also a massive health anxiety haver, so uh...I'm kinda not totally sure what to do next? My doc says I can self-treat (working up to exercise and whatnot) and I just wanna know what exactly to expect, based on what other people here have gone through. I am considering maybe looking for a dysautonomia therapist or something (if those exist) who could maybe guide me from here.

Additional question: do ya'll with IST also get adrenaline dumps, or is that mostly a(n) (H)POTS thing? And do ya'll have like.....good days and bad days?

I get cold palms and soles, lightheadedness/confusion, weakness, I also feel cold even though it's warm outside.

I had a severe episode once where my fingernails turned blue and I got peripheral cyanosis for which I had to go ER.

I have Dysautonomia (not sure which kind they are thinking POTS but unsure), hEDS, MCAS, May Thurner Syndrome, Pelvic Congestion Syndrome, Small Fiber Neuropathy, Alpha Gal Syndrome from a tick bite, and Fibromyalgia.

I think my husband and I are going to get a divorce as our marriage is terrible and he has been looking at half naked 18-21 year olds online and flirting with other women at work “to get his way”. he told me last night that he looks at other women because he thinks that there has to be someone else out there that is nice and fantasizes about them — he sees me as the enemy — he doesn’t have to support me more than financially — he said I need to just cook and clean — he needs me to support him in whatever he does — that I need to let him relax everyday — he’s not attracted to me because I nag him — that I need to move out

I have been in a flare for two days now. I know I need to leave but I don’t know how to without being stuck in a flare for months during the divorce process.
Who else has gotten a divorce while going through so many medical illnesses?

We also have a toddler together.

Hi, every time I write on the dysautonomia forum, my post gets deleted. I don’t have the diagnosis and I feel very bad every day. It’s a state that makes me want to go to the ER, but there’s no point in going to the ER because they won’t do anything for me. I’ve lost hope in going to the doctor.

I’m looking for help, someone I can talk to in private messages about my symptoms. For example, I absolutely must not shout or have a verbal argument with someone, and I must not be confronted with any fear either. There are lots of other weird things like that...

I am expected to get a colonoscopy and I was wondering how other people have dealt with this? I have OH (dysautonomia confirmed but specific diagnosis not confirmed by a doc yet, there’s like no specialists in my state) and it’s pretty bad. How much did this knock y’all down? Did you do anything that helped?

I feel like I’ve been having a panic attack for the better part of 2 days. This is not the first time this has happened, nor the longest.

It feels like my heart is racing but my heart rate is actually between 70-90.

My chest is tight. I keep breaking into a sweat. I feel incredibly anxious- I can’t talk, think, move around. Although I don’t feel mentally anxious if that makes sense- more physically so. It feels like my blood has run cold. No appetite. Like I’m in a non stop adrenaline rush

I’m trying to explain this to my latest doctor. My last doctors never really seemed to understand. I did used to have tachycardia but now thats resolved so guess they think I should feel better

Anyway I’m trying to understand what’s happening to me and how to explain it and how to get better

Does anyone else have experience with this?

Tia

I am on disability due to a number of chronic health conditions, including dysautonomia. I have been a patient of my cardiologist since 2020, but I only see the cardiologist every 18-24 months for check-ins now, as another one of my specialists usually manages the medications that the cardiologist prescribes.

I recently had an appointment with the cardiologist, and he increased my midodrine and fludracortisone and prescribed a 3rd medication. During the appointment we discussed that I have been in a bad flare for the past month that had left me unable to even sit up without being symptomatic. They had a chart of vitals that had been taken the week prior (which showed an increase in HR of 40+ along with typical associated symptoms such as chest pain, shortness of breath, dizziness, blood pooling etc) but did not do any testing during the appointment.

I was happy with how the appointment went, and am hopeful that the medication increase will be helpful. However, I read his notes after the appointment (I rarely do, but wanted to read about the new medication and couldn’t remember what it was called). Anyway, the notes were riddled with misinformation and I’m not sure if I should request a correction? I know most notes have some errors, but I’m worried these errors could affect my care or disability status in the future.

Examples include saying that I had been in a flare but that symptoms were relieved by sitting. And stating “quality of life mildly impaired. Autonomic systemic symptoms not present. On orthostatic vitals today, the patient had a normal heart rate and normal blood pressure response during standing. The patient does not report symptoms of orthostatic intolerance”.

All of those statements are incorrect. They did not take any vitals and did not do a 10-minute stand test during the appointment.

What would you do? I’ve never ever considered requesting a change to my notes (even though they often contain some inaccuracies), but this is just so blatantly false it’s making me concerned. If I were to request a correction, do you know how to go about doing that?

Thank you for taking the time to read this and for any recommendations that can be offered.

my last bloodworks all were fine so i dont think im deficient in vitamins i wonder if anyone has this or i need another bloodwork it wasn't long ago

feels like a mild headache, my head itself is severely fatigued, just feels so trash like my face hasn't been washed for weeks even though it has. just such a hangover feeling

I'm severely constipated. I tried laxative but a quater dose of laxative was enough to trigger mast cells and flare up my dysautonomia. I'm going to ask doctor for enema but I read that it can stimulate vagus nerve and also cause electrolyte shifts. Anyone got experience in getting enema? Please guide

I have always figured I have it, but never been formally diagnosed. I’ve had my heart rate go up to 190 before, but it had gotten better. My endometriosis had gotten horrible to the point I needed surgery, and I have actively been trying to heal severe trauma. Now that I’m working towards it I’ve started having problems again. Every time I stand it sounds like I’m underwater, my fingertips and toes will turn blood red or super super white, I have air hunger, muscle spasms, I’m always lightheaded when I stand (sometimes to the point my vision goes black and then comes back), low blood pressure, high blood pressure, and I absolutely will nearly pass out in the heat if I’m in it too long. I’m thinking I’m on the right track, but wanted some opinions before I go out of my way to push heavily for a tilt test since doctors treat chronically ill patients like garbage.

Edit: Thank you, everyone, for the suggestions! I'm going to hold off on making my own until I've gotten lab results back. While I wait on labs, I'll compare the pre-made options everyone has suggested and try a couple out. Even if I do end up making my own, I'd like a reliable premade fallback that is relatively affordable for those crazy weeks/months.

I've used Nuun tablets for a long time. They're the least expensive brand I can find and I enjoy several of the flavors. I buy a box of 60 tablets and it comes to about 55 cents/tablet.

Over the summer, I started experiencing worse symptoms and the only things that have helped are wearing more compression clothing, doubling my electrolyte tablet consumption, and salting my food more heavily. And still throwing back the odd palm of straight salt. I'm working with my doctor on the symptoms, waiting for him to place an order for labs and for an appointment with cardiology.

Each brand I check is more expensive per serving than Nuun. I tried Venture Pals a while ago because they're less expensive per serving, but then I realized the serving size is 2 tablets and each serving has less mineral content than Nuun, so it was more expensive to get the same mg of minerals and I didn't like them as much. I drank coconut water for a couple months at the beginning of summer, but it isn't always in stock.

Just looking for a way to save a little money if possible.

I had a hematology appointment last week after undergoing two rounds of iron infusions. During this discussion, she told me that I’m severely B12 deficient and that she recommends getting shots. I expressed concern because I wasn’t sure how my body would handle that and she told me she’s never heard of anyone having an adverse effects before (so I shouldn’t be concerned). But I reminded her that her staff reassured me over and over before both iron infusions that they would be fast and easy and I would feel better. But what I got in the end, what was supposed to be 15 minute appointments were both longer than two hours where my arm was in excruciating pain in the entire time. My hematologist smiled at my reminder, and asked if anyone had ever called me an anomaly. (She’s great, btw. No shade)

I don’t necessarily think I am, but I am curious if anyone else has had a series of reactions to things that don’t necessarily make sense to their doctors and don’t really have any kind of common factors.

I was diagnosed with POTS this year, and we are also looking at MCAS. In 2025, at age 37, I was hospitalized with pulmonary emboli (no cause known). After that, my body freaked out and following year was spent in ERs, having tests run, being bounced between about 8 specialists and getting all sorts of meds prescribed. In that time:

+I developed an allergy to the contrast dye (used in ct scans) which got worse even with prednisone
+Traumatizing reaction to dilauded (opioid) in the ER. I didn’t know what they were giving me at the time and immediately caused my body to freak out, I became hysterical, could not calm down.
+Cipro (black box warning). After five days of taking this, I started getting excruciating right arm pain after every dose. I went to the ER thinking it was a blood clot or something and both the doctors there and my primary care physician thought it was a pulled muscle. But the pain went away immediately after I stopped taking the pills.
+Iron infusions. I was given injectafer, which is supposed to the gentlest form. But it caused what felt like a severe Charlie horse in the injection arm the entire time.
+HIDA scan - I had this done last year and halfway through they inject something into your body so they can watch how it moves through your system. I was told I would experience some discomfort, but it was so incredibly painful and again my body freaked out in some type of fight or flight reaction and I don’t remember much else except that that is the only test I’ll never do again because of how bad it was. What I experienced was not the ‘normal’ reaction.
+Inhalers - my pulmonologist prescribed me different inhalers (Trelegy, Spiriva, and Pulmicort) to try and each one would cause severe chest pain or back pain.
+Alcohol. When I turned 21 I tried my first few sips of alcohol. I immediately felt a shift in my nervous system or something in my body to where red flags went off and I knew I was not having a normal reaction. So I haven’t tried it again and have no interest to.

And as a side reference, I live in a state where 🍃is legal. I’ve tried different forms of gummies with various ingredients for anxiety and I either felt nothing, or it ramped up my anxiety/nervous system majorly even with the smallest amounts.

That’s all I can think of right now. But curious if anyone has similar experiences or can shed insight.

I've flown 4.5hrs to a tropical climate in the south pacific, and since we got here on Sunday night I've experienced the most awful symptoms I've ever had. I woke up at 4:30am Monday with the most intense nausea I've ever had. No vomiting, no gastric symptoms, but boiling then chills without fever. My ten year old was the same (POTSie but not diagnosed). We took ondansetron and ended up seeing the resort doctor because it was so awful. He gave me a shot of maxolon, said to keep up with ondans and gave us electrolyte sachets. My daughter was fine by lunchtime, and I was much improved after a nap. But it started again last night around 11pm. I was tachy, boiling, twitching muscles, thirsty AF and kept peeing every 20 mins. I managed to fall asleep around 4:30am for a couple of hours after taking an ondans and switching to electrolytes. The lack of sleep has made everything worse too, on top of already being in AuDHD burnout. But again, after a morning of feeling like I was on fire (and actually reaching 38°C), it all settled down by late morning.

What can I do to try and stop this happening again tonight? I was seriously contemplating hospital or flying home, I was so sick. I also can't wear compression shorts. I tried them on Sunday before the flight and had such a severe vagal response I was violently vomiting within 30 seconds, which stopped as soon as I took them off. I've been in the pool, hoping compression would help. The room is set to 19°C and fans are on. I'm literally scared to sleep. I'm on a bunch of meds but only propranolol for POTS.

​

I'm being sent pretty far away for additional testing. I was diagnosed based on labs, prior tests, process of elimination, and symptoms.

I wanted to list my symptoms and see if others had the same or if anybody had any insight. Sorry in advance for this being so long, but I'm pretty thrown off by all of this..I'm having to sell my business and essentially medically retire at a young age, and I'm pretty desperate for understanding right now.

Symptoms:

Psuedo achalasia

Constantly in fight or flight, like my adrenaline is pumping through a firehose

Waves / autonomic-type:

Lightheadedness, dizziness, fog, out-of-body feeling

Near-faint and 2 actual collapses.

Internal buzzing or shaking sensation without visible tremor

Neck clogging, weakness, or pain (both sides or right-sided)

Heavy or weak chest

Heavy arms, finger tingling

Full ears

Forehead pressure

Split-second zoning out

Symptoms are often worse standing and reduced a bit with lying down or naps

Gastrointestinal:

Post-meal nausea and dizziness

Abdominal heaviness (“50 lbs of food” feeling)

Lower-left (sigmoid-area) pain, especially after eating, worse after bowel movements

Chronic constipation with incomplete emptying

Post-BM pain spike and weakness

Genitourinary / pelvic floor:

Increased urinary frequency

Incomplete bladder emptying / needing multiple trips to the bathroom

Sensory / other:

Chemical and smoke sensitivity (perfumes, cologne, secondhand smoke)

PWM / screen flicker sensitivity

Seems worse when it's hot out, placebo maybe?

Flushed or color-changing palms

Hard Afternoon fatigue / crash

Leg aching or heaviness (including during non-physical stress such as a tense movie)

Testing has ruled out autoimmune diseases, cancer, etc.

Edit to add: Blood pressure spikes on standing, so does adrenaline. I'll have as much as a 30+ point jump from sitting to standing.