Golden State Warriors Center Kristaps Porzingis won an NBA championship with the Celtics a few years ago and is a former NBA All star. For the last few years he’s been battling a mystery illness that’s limited him to less than 20 games the last two seasons and missing half of the season before that. It turns out that mystery illness is POTS and he’s now contemplating retirement at 31 years old. Hate to see it, but in a weird way makes me feel less alone with seeing someone in the public eye have to go through this and shed some light on how awful autonomic disorders can be.

https://sports.yahoo.com/nba/article/kristaps-porzingis-reportedly-dealing-with-recurring-pots-symptoms-as-warriors-explore-trade-options-182650464.html

Could it be be due to leg muscles working. Standing at one place is very uncomfortable.

It’s so hard right now.
I went from being able to do so much and genuinely thinking over the summer that my symptoms were completely gone but then over a month ago, they’ve come back and they’re even worse than before. A few years ago I had to leave public school from it and now I’m having to consider if I can stay at my job (which is upsetting since the job I currently have is practically one of my dream jobs). I’m religious so I’ve been somewhat able to hold myself up and stay positive but, I feel like I’m back at square one. I’m in so much physical discomfort and mental pain. I’m having to even figure out if I am able to continue attending my church in person (it’s a long drive since it’s a specific denomination I follow and I’m from a very middle of no where town) how much longer will this slide be ☹️ it’s so hard to imagine any future for me whenever I get like this. The amount of times I’ve been tempted to just give up on life itself has been so hard. I know I wouldn’t do anything, but the thoughts still lingered.
I’m just constantly dizzy and my heart rate is going all over the place but it also feels like it’s super slow when I’m about to sleep to the point where I feel like I’m manually breathing, and I can’t even draw anymore without it feeling like my eyes shaking. 🫨 must really tired. I’m seeing my old friends get to have so much fun in school and such but it hurts even more now since I had for a while the feeling that I was better.

does anyone else get severe facial flushing, specifically at night time? this will probably sound insane but my skin flushes every single night without fail sometime between the hours of 6-10pm. it swells, burns, turns bright cherry red, gets really hot, and throbs. there's also a lot of sinus pressure. recently was diagnosed with pots/dysautonomia and in the process of being tested for mcas. my doctor has me taking 40mg famotidine twice a day and allegra once a day, as well as clonidine twice a day. the clonidine seems to help make the flares a little less intense but doesn't fully stop them. i've read about small fiber neuropathy, erythromelalgia, etc. and i'm honestly feeling so overwhelmed and confused. just curious if anyone else flares in a similar fashion, if they found out the cause and what medications helped them? thanks:)

I posted 2 days ago about my experience after my tilt, and I was told people can feel flu-like symptoms after for a few days up to two weeks.

I am having high fevers up to 103, sore throat, swollen lymph nodes along with palpitations and heart rate 130’s sitting and 170 walking. I have dizziness, fatigue, and lower back pain. All of these are symptoms of legit infections, but everything is coming back negative. COVID, flu, RSV, strep, and even mono are all negative.

I know there should be no way this is from the TTT but it happened the day after and I seemingly have no other explanation. Has anyone had a similar experience?

I'm 21F and currently attending Penn State, and I'm really struggling with figuring out how to have a normal college social life while dealing with dysautonomia.

I recently started taking metoprolol succinate ER 25 mg (at night) and midodrine HCl 2.5 mg (during the day), and they've made a significant difference. My heart rate is much more controlled, my anxiety and racing heart have improved, and I'm finally able to do more things again. However, I still experience dizziness when standing up and feel shaky and weak almost every day.

If you're familiar with Penn State, you know that walking is basically unavoidable. Getting downtown, walking between bars, standing in lines, and then walking home can involve a LOT of time on your feet. Since prolonged walking and standing are some of my biggest triggers, the thought of going out makes me nervous, ultimately making my symptoms worse.

I know there are quieter bars where you can sit down, and that's definitely an option, but I genuinely love dancing and being out with my friends. I'm only 21, and I don't want to feel like I have to miss out on these experiences because of my health. I'm also trying to navigate the whole drinking situation.

I'm curious about:

• Does anyone take metoprolol and/or midodrine and occasionally drink? How does alcohol affect your blood pressure, heart rate, or symptoms? Have your doctors given you any specific guidance?
• Nonalcoholic alternatives: What do you typically order at bars? Has anyone tried nonalcoholic drinks or calming alternatives that don't worsen their symptoms?
• Standing and dancing: How do you manage going to crowded bars, dancing, or standing for long periods without getting dizzy or feeling faint?
• Walking distances: How do you handle getting to and from bars, especially in college towns where everything involves walking?
• Blood pressure: For those who struggle with low blood pressure or orthostatic symptoms, have you noticed alcohol making things significantly worse, even with just one drink?
• General advice: Do you have any routines, precautions, or tips that make going out more manageable?

I completely understand that alcohol can worsen dysautonomia and that medication changes should be discussed with a doctor. I'm not looking to stop taking my medications just to drink, and I plan to ask my cardiologist about what's safe for me.

I'm mainly interested in hearing people's personal experiences and how they've found ways to enjoy their social lives while managing this condition. I feel like I've already missed out on so much because of my symptoms, and now that I'm finally starting to improve, I really want to find a balance between taking care of my health and enjoying being a college student.

Hi everyone,

I have dysautonomia, and for at least five years, my blood tests have shown abnormalities suggesting chronic compensated hemolysis (premature destruction of red blood cells).

My results include:

- Low haptoglobin

- Elevated indirect bilirubin

- Increased reticulocytes

- Normal hemoglobin levels

- Negative direct Coombs test (no evidence of autoimmune hemolysis)

I also have a history of vitamin deficiencies and some abnormalities in my cholesterol levels.

I'm trying to understand whether there could be a connection between dysautonomia and red blood cell destruction, or whether these are two separate conditions.

Does anyone here also have chronic hemolysis, low haptoglobin, or unexplained abnormalities in their red blood cells?

If so, have your doctors identified the cause? Has anyone found a possible connection with dysautonomia?

I'd really appreciate hearing about your experiences.

I am bed ridden from severe MCAS and dysautonomia flare up. I barely walked these past few days. I need to start walking more but the problem is my heart rate spikes to 120-130bpm so I'm scared. What do you guys do? Do you walk or work out despite the high heart rate? At what heart rate should I stop and rest?

Hi all! After years of unexplained symptoms, I’m finally in with a neurologist who specializes in dysautonomia. I went to my first consult, which they believe to be either POTS or NCS, but they can’t confirm until we do my testing (including a tilt table test) in January. The problem: my symptoms are the worst they’ve ever been. Especially the chronic fatigue. I am really struggling to make it through work days, and it’s seriously impacting my productivity at work, which concerns me. It also doesn’t help that my insomnia is terrible right now, so even when I am exhausted, I still feel “wired” when it’s time to go to bed at night. I rely on an electrolyte powder, B12 vitamin gummies, and increased water intake. However, that doesn’t necessarily help with the fatigue.

I’m listing my symptoms below. Any and all symptom management advice is so appreciated. I have an appointment with my PCP in November to see if we can do something about the sleep/fatigue until I get an official diagnosis. I’ve seen people recommend low dose stimulants, etc. I’m just so overwhelmed and struggling to get through daily life.

heat intolerance & excessive sweating
Excessive fatigue/insomnia that I feel in my chest
Anxiety
Frequent headaches/migraine attacks
Recurring nausea
Feeling faint after standing from a deep seated position or laying down
Frequent syncope and presyncope episodes
Digestion issues
Overall days or feeling “off” or like something is wrong
Heart racing/out of breath during normal activities (walking up stairs, going on a walk, even waking up)
High resting heart rate & BP jump ~30-40 BPM from sitting to standing
Feeling shaky, lightheaded, and nausea standing in lines/standing for long periods of time

Does anyone have this? Im wondering if it could be dysautnonmia. Very often when I go to drink from a bottle especially I'll get a sudden head rush/slight disorientation. Its always very alarming. Any ideas?

I’ve had this condition for well over a year. When I first developed dysautonomia I had to do the classic “lay down with your feet up” to digest any food, plus adrenal dumps and ice cold extremities.

All of that is mostly behind me, so I have improved! But I still have big issues lately especially GI issues, possible gastritis at the moment, but anyway, my question.

Since I still deal with brain fog/nerve sensitivity/feeling overstimulated after meals, is it possible that I can have post prandial symptoms even with regular blood pressure? Or what else would be causing this?

I’ve been random waves of feeling super cold and then really warm lately. I just tested my blood pressure with a monitor and it said 148/70 pulse of 65.

seeking an SSDI attorney in WA that has a good understanding of dysautonomia, especially how to leverage abnormal tilt table test results

For the background I used to be a healthy person, and I exercised regularly for the past 8 years. Then one day I had unexplained fatigue and tachycardia after exercise(it was just different and I could feel something was wrong), rushed to the ER and all tests came back normal. After the same thing happened for the third time from just walking my hr shot from 100 to 150, I got really scared and thought something was happening to my heart. Since that day I can't function. Any slight physical activity like cooking or walking shoots my HR up. It is the worst in the morning, some morning are so bad I can't walk, I need to sit down, and some mornings my HR does not shoot up that high. However I feel very weak and can't tolerate physical activity, and I know if I try to exercise I will feel so sick that I am even afraid to try. I feel like my body has betrayed me. All this diet and exercise that I have been doing for years to stay healthy was useless. It has been going on for almost a month now.

This took mental toll on me. Prior to that I had health anxiety but nothing ever like this happened so I do not think it is anxiety. I know my body and I can feel something is happening. Multiple cardiologists told me there is nothing wrong with my heart and their conclusion was "autonomic dysfunction" or "exaggerated sympathetic system response". (because I did a stress test 7 days before the third tachycardia episode and the symptoms onset, after that I had echo and holter). This entire thing made me super anxious. I saw 5 different cardiologists and 3 different psychologists. I am also tired of going to the hospital multiple times a week.

So now I am depressed, I lost 2-3kg of weight, I can't work on my research and I constantly try to read and find the cause / solution. My girlfriend said my ER visits and anxiety give her a lot of pressure and she is tired of it. She also says she does not know how to support me. She told me she would want to stop communicating for a while. It is the third day of no contact and I really miss her, putting this on top of what I am dealing with is destroying me and I literally see no escape. I am not playing a victim but I feel like she left me in the time when I needed her the most, so I do not know what to think about it.

For anyone who has had a tilt table test done, how does
it feel? I have mine scheduled for Nov. 4. Thanks in advance!

Anyone else have a HR of over 100 BPM every morning right when you wake up? Even when not in a flare and your HR is mostly controlled during the day with meds such as beta blockers?

I’m wondering if this is just a normal symptom for us (I have POTS and IST) or should I have my medication dosage adjusted? 🤷🏻‍♀️

Hi everyone!

Since May, I've been experiencing a wide range of symptoms that seem to align with dysautonomia. I've seen numerous doctors, and two have suggested that dysautonomia could be a possibility. I'm currently waiting for my neurology appointment.

I also had a tilt-table test, but my heart rate didn't increase significantly during the test, despite having experienced noticeable heart rate increases upon standing in the months leading up to it. One thing I did notice during the test was that my blood pressure increased.

I was also diagnosed with H. pylori and completed treatment, although my symptoms had already started before that diagnosis.

Here's where things get confusing. My boyfriend has also started experiencing many of the same symptoms, including skin rashes, headaches, brain fog, feeling disconnected or out of it, gastrointestinal issues, and fatigue. He also tested positive for H. pylori, which was treated and confirmed eradicated.

My symptoms started first, and his developed sometime afterward.

I'm struggling to understand how we could both develop such similar symptoms around the same time, especially when some of them seem consistent with dysautonomia. I know dysautonomia itself isn't contagious, which makes the situation even more confusing.

Has anyone experienced anything similar, or does anyone have suggestions about what could potentially explain this? Could there be a shared environmental factor, an infection, or something else triggering these symptoms in both of us?

I'd really appreciate hearing about anyone's experiences or suggestions. It's been an exhausting and confusing few months trying to figure out what's happening.

i did a sit-stand test at the doctor last week, and it was normal (no significant heartrat or blood pressure change), it probably lasted 3-4 min total.

I know from being at home my bpm from lying/reclining to standing leaps around 50 immediately, my blood pressure doesnt change really, maybe increase. should I be concerned that the sit stand test was normal? he originally thought POTS, still thinks dysautonomia, im on urgent referral for holter monitor. i had a lot of data directly from monitor app, so he saw that. if i sit for like 30 min to an hour and stand i sometimes get the same symptoms especially if i stand with urgency.

I have dysautonomia. I am unsure which type. My tilt table results were normal 10 years ago when I did that testing. My GP said I have dysautonomia unspecified. I also have hEDS. I took up smoking 6 years ago during quarantine. Never noticed a significant difference.

My blood pressure tends to run low. Every time Ive gotten my blood pressure checked at the Dr the nurse says "you have the blood pressure of an athlete!" ? Weird because I'm not very active lol.

Fast forward to today. I quit nicotine 3 days ago, cold turkey, because I started Vyvanse recently for my ADHD and figured I would be stressing my heart out too much on 2 stimulants. I went to get blood drawn today for my labs at the psychiatrist, and they couldn't get enough blood! My veins simply were not pumping enough blood to my extremeties!!! Half a vial. Then they said let's try again in an hour, after i chugged a couple bottles of water. An hour or so later, same thing, my blood was just NOT pumping enough to get a full vial, let alone the 4 they needed. They said we will try again in two weeks.

I'm also on Guanfacine which I started 2 weeks ago, but my blood pressure has remained the same on that (not concerningly low).

Now, I'm a little worried it's TOO low, and they whole reason I quit was because I was worried my blood pressure would be too high.

The other weird thing I've noticed with quitting is I keep getting rashes/hives in random places on my body that get extremely itchy. I have suspected MCAS but I haven't had further testing, it's something my GP mentioned for why I get randomly itchy hives on and off but it has not flared for YEARS until yesterday (day 2 of no nic)

What gives? Anyone else experienced something like this?

I was 160 pounds perfectly healthy. I got food poisoning and then I fell all the way down to 130 pounds and it’s been such a pain to climb back up and I’ve slowly made my way back up a little bit. I’m currently at 136 pounds. But as a 6 foot male that is still underneath the healthy BMI threshold. I’m really struggling with a bunch of different symptoms, but mainly my stomach. I also have screen sensitivity with computer screens and TVs and can kind of be on my phone. I’m just hoping that once I get over 140 pounds things can lighten up and get easier. Has anyone been through this?

My dysautonomia/hyperpots was mild in the beginning. I was stupid and tried the thiamine protocol and it flared up my dysautonomia severely. I also have MCAS. Both my MCAS and dysautonomia are flared up right now. It's been 3 months. My symptoms are fast heart rate, lightheadedness, body stuck in fight or flight mode, heart palpitations, heart racing in the sleep, chest tightness, tunnel vision and 100 times worse dysautonomia symptoms. From playing sports to bed ridden. Just a small walk makes my heart beat at 130bpm. I did not expect a single dose of thiamine HCl to cause this much damage. My theory is that my sensitive nervous system got shocked from the sudden thiamine supplementation. Has anyone experienced a similar reaction to thiamine and does it get better?

I got diagnosed like two months ago. Here are my symptoms:

- Orthostatic hypotension when changing positions
- Wild and scary blood pressure crashes out of nowhere
- Coathanger pain
- Can’t stand in place for too long
- Exercise intolerant
- Tachychardia

What I’m doing:

- Compression socks
- Beta blocker
- Water and salt
- Electrolytes
- Cardiologist has me wearing a heart monitor for two weeks
- Sitting down and laying down as much as possible

My cardiologist recommended recumbent bike exercise but I haven’t found the time or energy to do that.

I know there’s lots of tips out there but the wealth of information is a bit overwhelming so I just want it all in one place.

Getting desperate for help. Need recs of your best GI doctors that treat dysautonomia and small fiber neuropathy. Live in MA but at this point will do anything. Share anyone you know, please. Thank you all 💙

First i need to clarify i am seeing many doctors right now to figure this out since dysautonomia testing and labs are typically non existent in my country.

So i wanted to ask has anyone else faced what i am facing right now-

Had holter in June and got diagnosed with POTS/dysautonomia and also have potential Long Covid/Mcas

Baseline Bp reduced from 140/90 to 105/65 since the beginning of this year on the same medicine propranolol 40 mg which i have been for 3 years for high Bp and tachycardia. Can't figure out till now why it's happening done all cardiac tests (only cta left) very frightening and i am thinking of all sorts of bad things like PAF,liabele hypotension etc etc about my body gradually falling.

Also i think my get more reduced when i sleep it dips further because i get chills in my chest when i try to sleep and i get tachycardia.

I'm from Wisconsin - due to ongoing issues I have wanted to investigate dysautonomia/small fiber neuropathy further. Saw a neuromuscular neurologist at one of the leading university hospitals in my state back in May who talked me out of getting a skin biopsy because he said he would treat my symptoms the same whether or not the results came back positive for SFN. And for further testing I would have to go somewhere else as their dysautonomia clinic had been shut down.

I asked my pain management doctor last week for a referral to Mayo or Cleveland Clinic as these seem to be some of the main places people go for dysautonomia. She said lately Mayo has been rejecting every patient she has referred, so she would send one to Cleveland Clinic. Called Cleveland Clinic today to be told they are not accepting patients with a dysautonomia diagnosis right now. I asked if there was a wait-list or anything, and was told the same thing - sorry, they won't take me.

Has anyone been able to get into Mayo, or know of another place I could ask to be referred to?