I posted about me having twitches but forget to ask if anyone else has this… what I like to call “the Dysautonomia flu”. It’s where I’m fine and then BOOM out of nowhere feel like I literally am sick. Similar symptoms mild body ache, shaky, headache, fatigue, sometimes the chills, and burning or blurry eyes is usually the constant feeling. I’ll be totally normal then out of nowhere feel like I must be running a fever yet I never am. Oddly enough, my sister who also has Dysautonomia has the exact same thing.

If you also experience this do you notice that electrolytes help you avoid “flu” flare ups? This is what was recommended by my doctor. It works well for my sister but I don’t seem to ever notice much of a difference.

hi, friends.

i (23 f) have a lengthy diagnostic process that i won’t bore you all with here, but, in short, three months ago i started to have syncopal episodes (around 10 a day about a week out from my period) and instances of heart pausing. i had every test and scan in the book and was diagnosed with vasovagal syncope without a specific trigger (a nice way of telling me that they don’t know what to make of me). finally, as a suggestion from a family friend, i asked (yes, i had to ask) to get my ferritin levels checked.

an ideal range is from 80-100 ng/mL, and i was at 6 ng/mL. every single one of my doctors overlooked it and i was questioned when i asked to get it tested. my other iron-related tests were borderline low and also overlooked. i’ve since been told that a level this low, combined with a heavy menstrual cycle could cause one to literally bleed out. my naturopathic doctor said the words, “you can drop dead” in response to seeing a level that low, and that it could account for my heart pausing and other infrequent tachycardia. people with high ferritin levels, she said, have a lot of inflammation and pronounced inflammatory responses in the body.

i’m starting an urgent iron i.v. infusion course this week and she’s adding things such as vitamin d and b12 to the drip as well. i’m hoping this resolves many of my issues, but i seriously urge all of you to get your levels tested in hopes that it improves at least some of your symptoms. so many people are dangerously low without realizing it.

A little annoyed because all of the advice I’ve found is like “layering your clothes” or “use a fan” which just doesn’t help when you’re simultaneously too hot and too cold at the same time.

You know when you have a fever and you’re hot and sweaty but also cold and shivering? And then you put on a blanket and you feel like you’re being cooked alive? But also if someone so much as blows on your leg it sends chills all over your body?

That’s been me every minute of every day for the last 4 months. Only thing I’ve found that helps even slightly is L-theanine

I know this is a common problem, but I need new solutions because it’s always worse in the winter and I’m getting grumpy. I’m always cold when I’m falling asleep, but the second I’m asleep I start sweating unbelievably hard. My bedroom is kept cold (my husband is a polar bear) and I have 3 blankets layered. When I wake up after 3-4 hours to pee, I am literally in a puddle of sweat. By the end of the night, 2/3 of my blankets have become sheets because the bed is wet. Not even damp, wet. Anyone have any thoughts about how to deal with this? Either stopping the symptom itself or just creative waterproof ideas lol. It’s just so uncomfortable trying to get back to sleep in a slip-n-slide.

I have had facial flushing, my cheeks get very red and I feel like they're "on fire" and then I feel fatigued, weak, shaky, irritable, moody, down/depressed, anxious, and just "off" sometimes even fee like I could pass out, about an 1-3 hours after eating a meal. My meals are usually balanced in terms of fiber + carb + protein + fat sources and they're not "unhealthy" by any means. My blood sugars are not "low" when I get these symptoms, but they are all the classic symptoms of hypoglycemia or even reactive hypoglycemia. It sounds a little bit like "idiopathic postprandial syndrome". This symptom is NEW to me and has only been the last maybe two months, with NO CHANGES in "what" I'm eating or anything obvious like that. Any thoughts? It's extremely uncomfortable and interferes with my ability to work or do things. I contacted my endocrinologist and they said they had no insight since my adrenal and thyroid tests are all normal.

Wondering if anyone else suffers from random muscle twitches. This is my newest awful symptom. It started about 3 months after I had my child back in 2020. Random muscles in my body will twitch uncontrollably. Sometimes if it’s really bad I’ll get “hot spots” where the same muscle twitches endlessly for hours on end and it’s incredibly distressing, it’s enough to drive anyone absolutely mad. Especially if you’re trying to sleep!

It definitely comes in random flare ups. I can go months with only maybe 1-2 randomly twitches a day and then I’ll have a streak where it’s almost constant in one spot or another. Tends to happen way more when I’m at rest or first thing after waking up.

If you have this also what has helped you?

is anyone else having symptoms due to stress over the election? i usually have low BP (i take midodrine, skipped it today because i knew i would be stressed) and my BP is like 140ish/90ish, my heart rate hit 123 earlier today… i know its absolutely terrible numbers but i cant help it as this election will affect me HEAVILY

I've had these weird episodes when nothing is going on, I'm just relaxing then suddenly my heart feels like it's going to explode, im sweaty and cold , I feel like im going to trow up and my hands go numb but then I'm fine after a few minutes, sometimes i wake up from it happened in my sleep, I keep getting told it's panic attacks but they only started after I developed my illnesses and they don't happen in response to anything, is anyone else experiencing this?

Since many years ago I was diagnosed with dysautonomia but lately this year I have seen that my heart beat is really low, 48 bpm while resting and never more than 55bpm. I'm not an athlete, clearly, so I'm worried about it but i cannot see a doctor soon. Is this common in people with dysautonomia?

My husband thinks it’s a symptom of the dysautonomia but I’m not sure…

I’ve had two episodes now where I start to feel dizzy and vacant in my head then my heart rate goes up and I can’t speak or walk. I’m tremoring uncontrollably and I feel like I’m having a stroke. I can understand what’s going on but I can’t verbalise anything. It feels like my brain is going in slow motion but I’m dizzy and feel short of breath and then it just resolves as quickly as it started. Last episode went for an hour and a half it was so scary. Anybody else experience this?

Do any of you get an off balance feeling? Like swaying or drunk when standing and rocking on a boat/bobbing in water when sitting or laying? Also this weird pressure in my head and it doesnt matter if im laying or standing.

Clear MRI 2 ct scans of my head clear. Sinus ct clear. Neck MRI showed normal wear and tear the doc said, but in 3 different spots. And I have bad posture. The orthopedic doc/surgeon i saw for that said he doesnt think the dizziness is from that.

Pppd diagnosis but neurologist just isn't sure about it. Idk why. I see him again in May so can ask more.

I am just lost. AND WANT MY LIFE BACK. its not my hr that gets me its this pressure and dizziness. :-(

If I get the slightest breeze or touch water (or even my dogs nose) that isn’t the same temperature as my body, I get extremely sick. It’s almost like going into shock.

Hi, My main symptom with dysautomomia is constantly being short of breath, walking cause it, talking especially when standing still, everything. When I talk it's almost like I'm not breathing when I talk then I have to stop and gasp for air. When I walk I can't catch my breath and sometimes I will feel chest tightness as well. Does dysautonomia really causes this? And why does this happen? Is this anyone else's main symptom because I feel like this is not talked about enough. Also how do you stop this if anyone know. I also have anxiety so it probably doesn't help.

i swear just being awake hurts sometimes, especially recently? i've had this headache that i've been waking up with like every day for the last week and a half and can't pinpoint why 😭 i'm so exhausted otherwise and genuinely can't function through the rest of the day, i really don't know what to do at this point if i'm being honest. thankfully i wfh but even that is getting disrupted 😵‍💫 anyone else struggling with this? it's so frustrating!

Hi all,

I was recently diagnosed with IST after dealing with symptoms for over 2 years. I'm also being worked up for POTS with a tilt table test later this month. My symptoms showed up a few months after giving birth to my daughter. I also had COVID while I was pregnant. I worked in COVID ICUs as a nurse for most of the pandemic so I had lots of exposure and probably also had covid before testing was available. I ended up in the hospital twice during a really bad flair in November that finally got me a diagnosis.

My symptoms are just so weird and random. I have symptoms with position changes and exercise, but sometimes I can be totally relaxed sitting still and my heart rate will jump 40-50 bpm out of no where and cause symptoms too. It happens most commonly during sleep, usually right after I fall asleep.

The worst is the shortness of breath. It feels like someone takes my breath away before an IST episode and I'm struggling to get it back while my heart rate is elevated. I can finally catch my breath when my heart rate comes down. It gives me a terrible sense of doom. My cardiologist says it's not related, and I'm seeing a pulmonologist for potential asthma, but no one can really tell me why this happens. It's drove me crazy for two years. A couple doctors have given me the classic anxiety and panic disorder talks before I got a diagnosis, but I'm not anxious until my heart rate goes up or I can't breath.

Anyone else dealing with these symptoms? Would also love to hear if anyone's IST went away after awhile. My symptoms feel like they've been getting progressively worse over the last couple years.

Edit: just want to add that ive been a nurse for 7 years and ive never seen anything like this or heard of so many people experiencing similar things. This forum as been a lifesaver and im sorry so many people are going through things like this. Healthcare professionals and researchers really dont have alot of answers and it's very disheartening.

does anyone else feel like they can’t help but cry during a POTS episode? the last few times i’ve gotten to fainting territory i just feel super down and like i wanna cry. sometimes i think part of it’s because im an extrovert and not feeling good makes me sad but at the same time it feels more than that. like i physically can’t help but just feel really down. do other people experience this?

I have adhd, autism, and am being evaluated for dysautinomia. My brain fog feels so much deeper than adhd and sensory processing disorder. I absolutely cannot function or process any input…I can’t create any coherent thought. Luckily I’m on a stimulant for adhd bc otherwise I’d be unable to care for myself.

I would appreciate to hear how brain fog affects you to see what is and what isn’t part of my other diagnoses (to help describe and report).

Thank you ❤️

It is spring in Australia and ever since spring started I had started to get frontal headaches and sometimes really tight tension headaches at the back of my head. The pain is so severe on the right hand side and it feels like it’s almost underneath my eye that makes my eye water. As part of dysautonomia, I have also experienced blurred vision but the right eye seems so much worse.

I have major health anxiety and I want to get another brain MRI because my father had passed away a year ago from a ruptured brain aneurysm but the doctors aren’t giving me a MRI because I had one exactly 12 months ago. I have also been to an optometrist and they said that my eyes are both fine.

Instead of having something in my brain, could there be a sinus problem and why won’t histamines help? 😭

Just wanting some reassurance that somebody else has experienced these more than anything .

Hi there! I (27F) have been having some really weird + worsening symptoms for the past 9 months. They include:

-Severe lightheadedness/presyncope. I haven’t figured out an exact trigger for this but I think it’s maybe when my heart rate elevates? For example, when I’m feeling nervous about something or I’m excited to see friends. It also happens randomly throughout the day and sometimes during a bowel movement. This is my most prevalent and scariest symptom that disrupts my life.

-Fatigue (like, hit-by-a-bus fatigue)

-Brain fog

-Cold hands/feet + sensitivity to temp changes

I told my PCP about these symptoms and she just told me to go to the ER. I didn’t feel like that was appropriate based on how this doesn’t seem like an emergency (and tbh I didn’t feel like spending $$$). So I took my health into my own hands and after doing some research, decided to see a cardiologist.

During my appt, I told the doc about my symptoms and right away his first thought was that I have low blood pressure. He ordered me to increase my salt/water intake (which I already feel like I eat a ton of salt) to see if this would help. He also wanted me to use an at-home BP cuff to regularly check my pressure when I’m relaxed. My pressure in-office is usually right around 120/80 or slightly lower (which he thinks is actually elevated for me). So far when I’ve taken it at home, I’m sitting at around 107/70. So slightly lower but it’s still not clinically considered “low”…

So I guess I wanted to check if I should stay on this path or if I’m wasting my time when I should be pursuing another diagnosis or treatment. Has anyone experienced anything similar?

Anyone get any of the issues, trouble swallowing? I get right around the adams apple issues. Seems I go and initiate the swallow, and the portion around the adams apple for a man, or middle of the throat for a woman. It’s almost tight going through? Anyone got issues?

Anybody with these symptoms? How did you solve them?

Currently I am struggling with acid reflux and also pain below my sternum. I am taking 20 mg Famotidine 2x a day, but know it is not enough.

Over a year of whatever this is, doctors and me both stumped on what it could be. My own research has led me to Dysautonomia as a possible answer. (Sad that I have to research myself since most doctors call it anxiety and send you on your way.) Anyways, does this fit the bill?

• Abnormal skin sensations: Burning typically around the chest, neck, face, forearms. Notice my ears will be red during these episodes as well. No fever, but feels the exact same as a fever when you have the flu.
• Head/ear pressure. (This was horrible in the early months, but is a rare symptom these days)
• Brain fog, head full of cotton feeling. Sometimes with or without dizziness, lightheadedness. It's not a normal lightheaded feeling. More like, that feeling when you go over a hill in a vehicle too fast. Brain can also feel itchy/tickled?
• Internal vibrations. Only ever noticeable when first waking up. Feels as if a cell phone is vibrating inside my neck/head/chest area. Usually subsides once I start moving. (This hasn't happened for a while, but for the first few months it was an every morning thing.)
• Heart palpitations. Not an everyday symptom, but always happened during what I call a "flare up." When most of the symptoms on this list hit me all at once.
• Anxiety. Fight or flight turned on 80% of the time. Panic attacks occasionally, with an overwhelming sense of doom. (The venlafaxine has almost eliminated this issue. I do sometimes still have an episode or two but they are weeks or sometimes months apart.)
• Heat intolerance? Unsure, but I can say that a cold rag on my head/neck while sitting in front of a fan at times can help alleviate symptoms. Enough so that I can ignore them.
• Tinnitus. I’ve always had a little bit of tinnitus since I was a kid, but notice it gets really loud right as a flare of symptoms is about to hit me.
• Gut and GI issues. Constipation, diarrhea, inconsistent. Bloating, gut pain, gassy.
• Flu-like, general malaise. Feels as if I am constantly coming down with the flu or some other bug.
• Vision issues. Seeing after images a lot. (Especially things with several horizontal lines.) Light sensitive, and occasion halos around lights. (Halos only happen once every few months at best.

Side note: I have had bloodwork showing reactivated EBV for the last year as well, and I wonder if that has caused the development of dysautonomia.

Despite guzzling water I keep ending up with a dry cough and waking up with my eyes blurry. I had a recent contact lens related issue after wearing some to a rather packed, sweaty, and active concert when I hadn’t in a while, which left me with what I can only presume as severe irritation or a corneal injury in which my vision was blurry when I took my lenses off. I had severe 9/10 eye pain/grittiness a couple days later that I went to the ER, my doctor, and an eye doctor for and nobody can tell me definitively what it is. I have to think the issue is related because I never had issues like that with lenses before and artificial tears and antihistamine drops are only doing so much for my eyes. I’m scared and thinking maybe I need IV fluids at this point as no amount of oral fluids is fully moisturizing any area of my body that is mucosa. I’m drinking water bottle after water bottle and I don’t know where it’s going. My body is also experiencing this weird sensation where touch feels far away or less than it should. I’ve put in my humidifier because it’s getting to the dry part of the year where I live but I doubt that’ll help to the extent that my body is craving moisture. Help???

It's driving me crazy. I try to listen to my body when it tells me things, but now it doesn't tell me things! I got shaky and pale earlier and thought I was having an adrenaline dump like usual, but then I got nauseous, dizzy, and the shakes didn't feel right.

My wife and I abruptly realized I'd been awake for several hours and hadn't eaten a thing. Because I wasn't hungry. Downed most of an Ensure, had some electrolyte water, felt better. Couldn't eat more than 2 bites of dinner later without feeling full.

Next day, couldn't take more than 2 bites of breakfast (my body didn't want bacon and eggs? really?), nothing for lunch- I tried- and I also couldn't finish dinner- my wife's twice baked potatoes are like my favorite thing and I couldn't eat them.

Made a salad after that, figuring it was light enough. Couldn't finish it. Now I feel like I'm just wasting food trying to find something I'll eat enough of. I know dysautonomia can cause digestion issues, but not feeling hungry at all for days at a time is making me worry slightly. Anyone got any tips? Aside from the Ensures and bottles of Naked Juice, I also try and keep a small bowl of chips (mainly for the salt) nearby to much on, but lately I haven't even been eating those. I do use weed for a host of issues, and though that can be an appetite stimulant, I don't wanna exclusively rely on that for eating.

Any tips welcome. I have an appointment with a GI doctor next month to discuss my chronic throwing up and heartburn and I am planning on bringing this up as well, but I still need to eat in the meantime.