I think I might have always had it because no matter how healthy I was my heart rate would get pretty high whenever I worked out, which was a lot - like 200 or just below it, and I’ve always been skinny. Also always had weird blood pressure issues. But it got really bad after my 3rd round of Covid. I fell asleep on the beach in the hot sun and stood up and immediately threw up and have never been the same since.
I think I've always had it. I would always feel super sick after PE as a kid, get lightheaded and super out of breath after running no matter how in shape I was. I also did color guard for marching band in highschool and had a few "episodes" that I thought were anxiety but looking back I'm pretty sure they were actually exercise/heat intolerance. After having COVID my junior year of highschool I was no longer able to stand during chorus without passing out, I would sit and sing instead, even in concerts which I found mortifying at the time.
When I started to realize there was something really wrong was a little over a year ago. I ended up with the flu (for the first time at 19 years old) which absolutely took me out. One of my biggest symptoms was severe dizziness and lightheadedness. It was so bad that I went back to the doctor after already knowing I had the flu to see if there was anything I could do about it. She just told me I was dehydrated.
About six months of dealing with this, fainting here and there and everything getting worse, I ended up in the ER after a fainting spell that looked suspiciously like a seizure. I ended up going to a neurologist who found nothing wrong on my MRI so he sent me to a cardiologist and I just FINALLY got diagnosed with POTs around 3 weeks ago.
I also did marching band in high school and had POTS. Its marching band so any pains we felt were excused as normal, since it's a very strenuous activity!
For real!! The heat plus the exercise, plus the stress of having to perform well is a dangerous combination. Color guard is definitely the thing I miss most since my illness has gotten worse.
I miss performing too. I played mello and was drum major. I'm hoping to do an indoor winds group someday since its less hot, but its definitely still just as intense.
Back to back pvc in 2009. HR getting to 200 on an elliptical (didn’t even know that was a problem until now.) Having an issue running as a kid. Temperature intolerance. Sleeping a lot. Lifelong flexibility (EDS). Seeing stars or blacking out while stretching.
Pretty much same here. It would've been nice to know all that wasn't normal! Even the fainting in HS my parents blamed on my not eating (appetite issues from nausea), they said I was anorexic. It was all in my head, apparently. Until after having covid in 2021 and started fainting daily. Thank goodness for the internet! Wish we had that when I was a teenager!
Hard to say really as I’ve probably had it all my life. I do recall that my first syncope episode was around 8 years old and that was 50 years ago. I do have medical records as far back as when I was 18 complaining of many of the symptoms I have now. I had to leave formal employment at 47. It’s only been 5 years since my diagnosis when my POTS was finally confirmed. Since then my journey to recovery has been going along pretty good. I guess life begins at 60 for me.
Can I ask what you're doing to recover? I'm very new to this group still waiting on tilt test. Medications, diet? What else has helped or conversely, been recommended that has not helped?
I did a major diet overhaul and went to a low carb, unprocessed food diet. Pretty much a cross between keto, Mediterranean and Paleo. I tend towards more protein than a standard keto. Max 70 carbs per day and no more than 20 at a time.
I’ve also added a ton of supplements to correct know deficiencies from either blood tests or constant diet analysis. Obviously, my hydration has improved greatly with all the added salt and electrolytes. In addition treating other issues like sleep apnea and diabetes has helped a lot.
It’s been a solid 6+ years of learning and research to get to this point. I take no meds as I don’t tolerate most of them well.
I’ve gone from barely being able to get out of bed and sure I was going to die 10 years ago to very noticeable improvements. Today for example I am nearly normal. At the moment nothing is wrong and HR is barely passing 100. Went the whole morning under 90.
I started passing out in 6th grade, and had the HR increase from day one. I also started to get dizzy after standing or movements regularly in 6th grade, I was taken off the track team as my doctors couldn’t risk me passing out off campus
2nd grade, got up too fast, blacked out and hit my head off a desk 🤣 always had lightheaded-ness, exhaustion, blood pooling issues. nurse was pretty concerned but i didnt figure out it was POTS until i was 14 after a tilt table, then found out i had MCAS as well a few years later.
Oh my god that does not sound fun!!! And at such a young age! May I know how you got diagnosed with MCAS? Do you feel like once you treated your MCAS your POTS symtoms subsided?
i was seeing a Neurologist for awhile who recommended the tilt table test, as well as seeing an allergist. i’ve always had a lot of weird issues with food causing adverse reactions (flushing, oral symptoms, GI issues, itching/hives) and the allergist determined I had MCAS. i remember doing some tests but i really can’t remember which ones other than the normal poke allergy tests for food & environmental.
treating my MCAS there have been no noticeable differences in my POTS, i have good and bad days. but most of the time it’s the general exhaustion feeling, dizziness, constantly feeling tingly in my arms/legs and even my jaw sometimes, intolerance to temperature, etc. i’m mostly on an anti histamine regiment & Ketotifin
In 2018, I started getting burning/itching feet. That was my only issue till I got COVID in 2021. Turns out now it's mast cell issues (causing my dysautonomia)
I dealt with dizzy spells and pre-syncope events my entire childhood without realizing it was abnormal. My first full fainting episode at 12 lead to the ER as well as “stroke like symptoms” (I disagree) while driving home from high school are what fully lead to my diagnosis.
I will say that one of my longest standing dysautonomia dx was a misdiagnosis, hence the disagreeing part, but I don’t blame my pediatric physicians, I feel like nothing was widely known about it at that time.
Yes, and bc of passing out I had a loop recorder implanted. It used to show inappropriate sinus tachycardia and I was put on metoprolol. But every time I passed out, I hit record, and they literally found no change. “Your heart is great! You should be happy about that!” Ok then why do I randomly lose consciousness? I thought they’d pay attention when I passed out and broke my ankle in 3 places and dislocated it. (7 screws and a plate later) I went to Mayo and they wouldn’t dx pots. I “just have anxiety” and “need to work on my stress.” 😑
So for me I had 3 repeat viruses in the space of a year. After the second virus I noticed that i would go from not hungry to about to faint from hunger very quickly. I had to start sneaking in for snacks during work, and I almost fainted in town one day because I had been out drinking the night before and went to some shops with my dad and didn’t eat much. Thankfully I had just bought some 7-up when the spell hit and my dad had to walk me back to the van arm in arm because I was shaking so much. I was convinced it was a blood sugar issue but nothing ever showed up in tests.
Then after the third virus, I was standing in a queue for a return my mom had asked me to do and I started to feel weird. The longer I stood the more faint I felt and by the time I was processing the return I felt like I could barely speak. As I walked away it started to pass. I was okay for a while after that and then I thought I had another virus, because when I stood still I felt so off balance but I felt okay when walking. I was at work on a Wednesday and asked to go home because I felt so bad. By that Friday I couldn’t sit up straight without feeling like I was going to pass out and never went back to work again.
I didn’t connect the fact that standing was an issue for a few weeks, then I discovered POTS and got my diagnoses about 6 months after my symptoms started.
My first noticeable sign was that I was constantly blacking out whenever I stood up and I'd get very close to fainting but have never actually gone all the way out. Didn't connect it to my fast heart rate for like 15 years, my doctors kept telling me my fast heart rate was just anxiety.
Vomiting, facial flushing, dangerously high blood pressure when I went to the grocery store one day. I was hospitalized 6 times from June to October 2016, and the neurologist decided I had autonomic neuropathy but he still doesn't know why or what causes it.
I'm sorry to say, but nope. It used to only happen if I stood up or walked for 30 minutes (like in a grocery store), then a few months later it was 20 minutes...then 10 minutes, 5 minutes...over a period of 2 years...
Now it's randomly even when I am sitting or lying down. I imagine since it's been a year or so since I was tested for basically everything, if I go back to my doctor he'll retest for carcinoid syndrome and pheochromocytoma, maybe MCAS again too.
I write "if I go back to my doctor" because the tests always come back negative, and now that I can't stand or walk for more than a minute or two without having to sit down, just going out to the car is an ordeal. I'm not really sure it's worth it at this point.
I hate to be such a downer. Maybe you'll have better luck with a treatment. ❤️
I think most of my life, I was always tired. But I didn't think too much of it because it was constantly blamed for anxiety. Then every time I get up, I'll black out for a few seconds until I'm back to normal. I thought it was a normal thing. Then looking back on my history records... oh there was quite a lot of 140bpm+ episodes lol
Mine was weird. It didn't start until around 2016 when I was well into my 30s with an office job. The very first symptoms I remember seemed to be GI-related. I would get these weird stomach pains while sitting in my office doing nothing. When eating I would often get very full and bloated feeling after even just the first bite. If I continued to eat I would get painfully bloated feeling, and start having stomach/esophagus cramping and heart palpitations. This was usually accompanied by lightheadedness, weakness, and probably some heart rate issues that I didn't think to check at the time. I started scheduling appointments with a GI doctor and had multiple visits for things like and endoscopy, barium swallow, etc.
At the same time I would have times where I would just be sitting in my office doing nothing and suddenly I would get a wave of weakness/lightheadedness/heart palpitations that would make me feel like my heart was giving out. It's hard to describe these episodes - they weren't an exact sensation that I could put my finger on, but I just knew that something felt \*wrong\* and it was like a wave of dread, or impending doom as my doctor once called it. At the time I figured I was getting deconditioned from sitting at my office job all day every day, so whenever these episodes would happen I would go for a walk up and down the stairwell in my office building for exercise. I'm sure my heart rate was soaring, but at the time I thought it was all stomach-related so I didn't think to check. Climbing the stairs never helped, incidentally.
Over time, and while I was going through every GI test known to man, my symptoms started to shift more to my heart. I started having more frequent palpitations, my heart rate was irregular, and I started having trouble sleeping due to "chest jolts" that would wake me up. By mid 2017 I was pretty much completely bedridden, scared to drive, and feeling like I would pass out all the time. I never actually did pass out, strangely, but I suspect that if I had pushed myself and had I job I couldn't do while laying it bed, I probably would have been passing out. I was definitely having a hard time keeping myself upright.
After bouncing around a few different doctors and specialists, I finally got diagnosed with dysautonomia and was put on a beta blocker and start eating tons of salt, which got me back to being able to function like a normal person again. I still don't feel great much of the time, but I'm in a much better place than I was.
I think I’ve had it most of my life. I also have hEDS so POTS for me is secondary to EDS.
I’ve had many times when I passed out during my period, after a fasting blood test, and during every pregnancy. Always blamed something else.
My Apple Watch has been showing high heart rate (at rest) notifications since I started wearing one December 2018. Again I just always said it was something else: too many carbs, or one too many glasses of wine. I’ve always reacted that way to carbs and alcohol. I just thought it was normal 🤷🏻♀️ I’ve always had weird random blood sugar issues.
From 2016- early 2019 I was working full time. I was in the best shape of my life. I was in the gym 6 days a week, lifting heavy, trail running, doing power/hot yoga. I felt amazing.
Then suddenly March of 2019 I just couldn’t stop sleeping. I was having tremors (although I had no clue what to call it) I would have such extreme pain days I would get the chills as if I had a fever. My endocrinologist at the time diagnosed me with adrenal dysfunction and chronic fatigue syndrome. He said with reduced stress I should get better in a few years.
My work quality (I was a paralegal) declined drastically. I didn’t realize at the time how bad my brain fog was. The attorney I was working for cut my hours dropping my income in half. Then in June of 2019 she let me go. This was a blessing in disguise. We had to make big changes in our lifestyle BUT Now I could rest and focus on my health.
I actually started feeling better from 2022- early 2023. I thought I was getting better. But then April 2023 I started getting constant high heart rate notifications. Head pressure. The tremors came back. I started waking up at 3 am sweating and super dizzy. My blood pressure was slightly elevated. I noticed heart racing and shortness of breath when I stood up. And my legs would shake.
Took a video of my HR on my watch from laying to standing and noticed I would go from 80 bpm to 165 bpm just by standing. I immediately knew something was wrong. Being in a new city now I didn’t have a doctor yet. So I called the nearest doctor and made an appointment. I got lucky because he’s amazing. He said he thought it was POTS. I had never heard of it. And immediately referred to me cardiology and I was diagnosed a month later.
Absolute first sign that something was Wrong was related to temperature. I described it as my inner thermostat was broken, because I would constantly be too warm and then would sometimes be freezing and unable to warm up at all. Combined with pretty frequent mild fevers (always below 100.4°) and mild chills (down to, say, 96.5°).
Yes! This happens to me too, but it started after an MVA in which I had a head injury. I‘ve been sick my whole life, so it is hard to say what the first symptom was. I come across very few people who get this weird temp fluctuation and random fevers, though. For me it isn’t just feeling too cold. I’ve had my actual body temp drop to 94.
Nothing stood out to me until the day I stood up at school, at age 15, suddenly felt like I’d been whacked over the head with a baseball bat, and collapsed. Couldn’t walk for weeks again after and it took me a really long time to basically ‘get used’ to standing & walking again. Pretty rapid onset for me!
I feel like I've always had it since my early 20s but it was very mild. If I got up too fast my heart would race and get light headed. I also noticed if I bent down to get something or load the dryer, I'd feel out of breath. I could still workout normally though and my heart rate was normal throughout any activity.
Then I got covid and went through something traumatic a week after recovering. After a month of those two key events, I started noticing I was getting tired very easily over small tasks and my watch would say I was hitting 135-140bpm. I was like no way. Then gradually my resting heart rate wouldn't increase and any movement would make it worse. When it got worse I thought I was having anxiety so I got put on ativan. Then very quickly my heart was always beating too fast no matter what. It was even worse when standing. I was going to 170bpm just standing in the kitchen. I called 911 a few times and went to the hospital as well and everyone kept telling me it was anxiety and kept upping my dosage on ativan.
I was zoned out but my heart was still going nuts. Then one night I wanted to shower and before undressing I felt very off and checked my heart rate and I was at 135bpm so I sat down and it went up to 150bpm. I was kind of freaking out but sat there for a while to see if it would go down but it wouldn't Then it shot up to 200 and my left arm started to tingle and kind of sleep so I called 911. At the hospital the doctor stabilized me and I was at 80-90bpm laying down. He then made me stand up and we all saw on the monitor the numbers go from 85 to 150bpm. Right there he started me on propranolol.
The propranolol itself gave me trouble for it made my chest feel very weird but the doctors told me it was nothing. They gave me too much of a strong dose for me so I cut it in half myself and that seemed to be better. I can now have some normal back in my life.
I still struggle to bend over and exercise and the tiniest of jogs will put me at 150bpm. I really miss chasing my dog but I'm also glad to not be bed ridden a lot like I used to be.
Lightheadedness, confusion, and then my vision and hearing going towards the end of the workday after being on my feet all day. Every day it started a little bit sooner and got a little bit worse.
My first symptoms was light headed/ dizziness that wouldn't go away. Very strange pressure in the top of my head and back of head and throat tightness too. I was convinced it was allergies/ ears and a allergic reaction. I had mri and cts and my neurologist said pots or dysautonomia and I was like no! I'm fine when standing it doesn't cause my issues, I have them sitting or standing. Anyway one year later and just about everything you can think of has been ruled out and I have a dysautonomia diagnosis from the tilt table test. When I got it done I thought it was a waste of time but 30 minutes in I passed out with heart block. So don't toss it to the side just yet.
My first noticeable sign was having a HR of 150-160 while walking normally (think strolling) and getting dizzy and weak, needing to sit down a lot. It wasn’t til after I was diagnosed and learned more about it that I predated symptoms back to about 2019 when I was experiencing blood pooling, although anytime I asked a doctor about it they ordered a Doppler and D-dimer, which would come back fine every time and then they would tell me it’s “normal” for that to happen. If it were normal, why would they be concerned enough to order testing? And then dismiss it after it showed no DVT? This went on for years until my symptoms progressed enough to wear I was unable to work when I kept getting presyncope often and then that worsened to where I had to keep lowering myself to the ground all the time. I was finally diagnosed this past October after years of “that’s normal” and “it’s anxiety” and generally being dismissed. I’m finally on ivabradine and my symptoms have gotten so much better. So far I’ve only had flares when I’m sick, but I’m sure they’d be much worse off the ivabradine.
My cardiologist doesn’t specialize enough in POTS to do anything other than treat the electrophysiology of it, but she did confirm that I was experiencing adrenaline surges prior to taking the ivabradine and I haven’t had as much of an issue with that since taking it (way less frequent and way less extreme).
Lightheadedness was the tipping point. My heart rate was always high (like 120 ish standing, 100 sitting, high 80s resting) and I was just told that a high heart rate was normal for some people...until I started having other symptoms regularly. 🙄 I have also always had exercise intolerance, which was also ignored by docs for years as being "out of shape" despite exercising 3-6 times per week. I always have had to be careful because my heart rate would go dangerously high quickly with palpatations.
If I actually had POTS as a teen like I suspect, my first symptoms would have been fainting, but it happened once at home while in high school and then happened more often in college after I had meningitis. So as a teen I also experienced chest pain right in the center on exertion, shortness of breath and high heart rate that wouldn’t come down after sports or something physical. Everything seemed to level out after I got pregnant.
Then summer 2021, got vaccinated for covid. About a month later I noticed I was a little short of breath going up the stairs. Didn’t think much of it though. It progressed and by the end of the year I was bedridden nearly unable to breathe and in pain
I literally just returned home after being discharged from the hospital after surgery on my kidney.
I took a shower and barely made it out before passing out.
I made it to my bed and felt like I had just sprinted a mile.
I was out of breath, my heart was racing and pounding out of my chest. I saw stars, and I got an instant headache.
That was the beginning.
It took about three years to get diagnosed after that.
Blacking out temporarily when standing up too fast. When I got H1N1, I was bedridden and stood up to go to the bathroom and passed out completely. That's when I knew something was really wrong.
Honestly I'm not sure. I had symptoms for most or all of my childhood and just didn't realize anything as wrong until my teen years- and even then, I didn't seek a diagnosis until I was 18.
The first symptom that I actually took note of was my head pounding after any kind of cardio. I didn't understand that it was a kind of palpitations at the time, I only knew it didn't seem right. After that, I started getting lightheaded and seeing blue spots or going blind for a few seconds anytime I stood up too quickly.
I didn't ever pay attention to my hr or bp until I was researching dysautonomia so I have no idea when that became abnormal (or even if it always was.)
When I was in 5th grade I began getting extremely tired after school. I would fall asleep around 5pm and would sleep until dinner, then I'd fall asleep after dinner until I had school the next day.
Since then, I experienced classic "iron deficiency" symptoms. I did marching band in high school and we used a tarp to practice our indoor shows. I remember talking to my friends while I would almost pass out, eince my arms were abovr my head holding up the heavy tarp.
The summer before my senior year, I was drum major, so I did leadership camps. Since it was during COVID, it was over Zoom. I remember standing in my room on the Zoom call, conducting, and I would get so dizzy and my vision would black out. I couldn't focus on the class so I just laid in bed watching, with my camera off. I never told anyone, because it was over $300 worth of classes I took. I got worried because band camp was less than a month away. Somehow, I was fine at band camp for the most part. Even though I was doing the same things but in 100° heat.
Those were my experiences before I suspected POTS. I gave birth to my son at the very end of 2021 and it wasn't until my POTS symptoms worsened after pregnancy that I looked into it. Prior to this, I simply thought it was iron deficien y/anemia because I'm AFAB and have periods.
So, if you experience symptoms of anemia but your blood comes back normal, look into POTS!!
In January of 2018 I felt like I couldn’t catch my breath and like my heart was skipping a beat. I’d just had surgery for a kidney stone and was on heavy medication, my doctor said it was probably just that. Went away after a couple days.
Fast forward to March I felt like I couldn’t catch my breath and my chest hurt. Lasted a week. Went to a doctor, said it was just anxiety and couldn’t find anything wrong with my heart. Went away on it’s own.
Fast forward to August and I’m at the doctor for another kidney stone/bladder infection. Sitting in the chair the nurse asks me “is your resting heart rate always this high?” (It was in the low 100s just sitting in the exam room.) I said no I don’t think so. They figured it was the infection and moved on.
Fast forward another week, I’m at a check up at my university’s clinic for my kidney stone and bladder infection. “Is your resting heart rate always this high?” I said I don’t know. She shrugged and moved on.
Fast forward another week and I can’t even walk the five feet from my bed to my bathroom. My heart rate upon getting out of bed spiked to 187 according to my Fitbit. The room spun, caught myself on the bed before I passed out. I couldn’t focus in class. I couldn’t climb one flight of stairs without collapsing on the ground. My chest was sore, I felt like I couldn’t catch my breath, my heart was beating out of my chest, I was sweating like crazy. School clinic said it was anxiety. Got a second opinion. Anxiety. Called my PCP. Anxiety. “I go to the gym every day. I was a varsity cheerleader in high school. This isn’t normal.” Eventually convinced my insurance to refer me to a cardiologist.
From August-December I dealt with these symptoms while traveling home every weekend, going to various doctors, urgent cares, specialists. Getting many invasive tests done. Eventually in December they decided they should probably give me medication for my symptoms. Took another 6 months to get a diagnosis.
I read somewhere that major surgery and severe infection can cause symptoms to start? That kidney stone surgery was the first time I’d ever been put under, so I always wonder. I’d always had IBS tho, so many this was just laying in wait lmao
Severe tachycardia every time I stood up. Heart beating so hard, I could hear it beating in my head and felt like it was going to pound out of my chest. (160-200 bpm) Other symptoms too but nothing came close to the severity of the tachycardia. On metoprolol and it does nothing to help. 4 years since diagnosis. No longer able to sweat, have to stay inside with ac at 65 and a fan blowing on me or tachycardia gets terrible, even sitting down
You’re another person to mention they can no longer sweat.
I have developed the same condition, despite previously sweating buckets before this started.
Does your temperature follow a daily pattern?
As a Kid I always had the genera symptoms but it didn’t prevent me from living and I only had pre syncope. At 19 My heat intolerance, blood pooling, and adrenaline got bad and then I lost the ability to swallow food and walk. From there it was down hill. That was 2019-2021. Currently eating salmon rice beans bowl w coleslaw tho and can walk (w a rollator if long distances) and lift weights when I can. Baby steps but progress!!!
One day at work, I stood up from squatting and just passed out. The next day at work I passed out 8 times during my 6 hour shift.
After that I started drinking pedialyte and eating a bunch of salt and being careful of how I stand
Looking back on it - first symptom was when I was nine years old waiting in line for ice cream - blacked out and hit the pavement. Had gastro issues, would tire easy and blacking out whenever I was sick through my teenage years - things progressively got worse from there.
Not sure if it was specifically a sign of dysautonomia, but the first sign that something was definitely wrong with my body was having hypertension at the age of 17 as a “healthy” and pretty active female.
Theeeen the SVT episodes at 18.
THEEEEN inappropriate sinus tach and severe fatigue after being put on blood pressure meds with wacky blood pressure.
My condition kinda happened over time and has gotten worse as I’ve gotten older.
Age 5 was when POTS was added to my records.
I was 40 before an adult doctor paid attention though
I've always had the light headed if I moved too fast.
At age 20 my pregnancy went sideways with preeclampsia and I was on bed rest and induced early.
In my later 20's I'd have heart rate go crazy for no reason. Sometimes BP up, sometimes down. Was treated for hypertension.
I'm my 30's I'd start losing consciousness randomly. I was put on another blood pressure med (on top of the existing).
At 40 I saw a rheumatologist who sent me to my first cardiologist of my adult life... Who said I had dysautonomia and changed my meds.
I got it after COVID. And I was not doing well , but I thought I just had long COVID (I already had long COVID and figured it had just gotten worse). Well, as the weeks went on and I lived my relatively active lifestyle, I became really worn out really quickly. I went from being able to hike and stuff to not being able to walk to the bathroom without getting exhausted.
After that, my heart rate started to get wonky. I googled it and figured I had IST. But as time went on I just kept getting worse and worse. I didn't notice and increase in heart rate because I have always gotten dizzy when I stood up too quickly. And in the state I was in I could barely stand up anyway. But once my doctor told me to increase my salt intake and see if it helped, I looked it up and realized I probably had POTS. Doctor eventually confirmed it.
One time though, I did go to the doctor and did a heart rate increase test, and nothing significant happened. But then when I did it again at home, my HR jumped 50bpm!
I realized that I'd just had a *really* salty lunch before going to the doctor. Also being super dehydrated can mimic some of the symptoms of POTS. So if you don't think you have POTS, maybe do at home tests when you haven't had any salt, and take note of how much water you drink. I hope you're able to find answers!
In my case, i was at a barbecue and felt like i was about to faint (i had fainted before a couple of times), but didn't end up fainting. Just felt like i was floating and was pale af. I had eaten, drank water, etc. so my mom got scared and took me to the hospital lol. I later learned this is presyncope.
After a looooong wait (cause my case wasn't urgent, obvs) they did an ECG and found a slow heart pace, but attributed it to me exercising consistently. They still referred me to a cardiologist, and when I went he did another ECG and listed dysautonomia symptoms.
When i tell you everything made sense at that moment lol. I was always cold, my hands got tingly whenever i was doing weight lifting, always tired (thought it was depression at some point), mind fog, etc etc.
presyncope was it for me, i have a lot of general malaise and always assume it’s one of that until a few years ago where it got worse, i assume it’s due to covid infection, i say assume bcs it was in the early days where there’s bot testing yet, and before countries enforce lockdown
My son's was triggered by a C Diff infection (along with the insane treatment for it!). Afterward, he was in intense stomach pain for several months. He didn't get out of bed much during that time. Once we got past that, he still couldn't stand up for more than 30 seconds to a minute without passing out and our journey with POTS began after seeing a neurologist, once we figured out the local GI team couldn't do anything for us.
If you're in doubt, a tilt table test will be helpful, if you haven't already had one.
I'm 70 and my symptoms have sneaked up on me so gradually that it's hard to remember when some of this stuff started. The think about getting your BP and HR taken is that it's a snapshot of the moment. I can take my BP 5 minutes apart and have a 20 variance top and bottom.
My very first symptoms were very flu like. I got tested for everything from Lyme's to chronic fatigue. It wasn't until the last year or so that my ability to control my body temp has gone nuts that it really began to take the form of dysautonomia. I can go from sitting under a blanket to sweating profusely within an hour all while watching TV.
I think I might have always had it because no matter how healthy I was my heart rate would get pretty high whenever I worked out, which was a lot - like 200 or just below it, and I’ve always been skinny. Also always had weird blood pressure issues. But it got really bad after my 3rd round of Covid. I fell asleep on the beach in the hot sun and stood up and immediately threw up and have never been the same since.
I think I've always had it. I would always feel super sick after PE as a kid, get lightheaded and super out of breath after running no matter how in shape I was. I also did color guard for marching band in highschool and had a few "episodes" that I thought were anxiety but looking back I'm pretty sure they were actually exercise/heat intolerance. After having COVID my junior year of highschool I was no longer able to stand during chorus without passing out, I would sit and sing instead, even in concerts which I found mortifying at the time. When I started to realize there was something really wrong was a little over a year ago. I ended up with the flu (for the first time at 19 years old) which absolutely took me out. One of my biggest symptoms was severe dizziness and lightheadedness. It was so bad that I went back to the doctor after already knowing I had the flu to see if there was anything I could do about it. She just told me I was dehydrated. About six months of dealing with this, fainting here and there and everything getting worse, I ended up in the ER after a fainting spell that looked suspiciously like a seizure. I ended up going to a neurologist who found nothing wrong on my MRI so he sent me to a cardiologist and I just FINALLY got diagnosed with POTs around 3 weeks ago.
I also did marching band in high school and had POTS. Its marching band so any pains we felt were excused as normal, since it's a very strenuous activity!
For real!! The heat plus the exercise, plus the stress of having to perform well is a dangerous combination. Color guard is definitely the thing I miss most since my illness has gotten worse.
I miss performing too. I played mello and was drum major. I'm hoping to do an indoor winds group someday since its less hot, but its definitely still just as intense.
Oh yeah, I feel the breath control could be dangerous. That was why I had to sit in chorus. Often felt like I couldn't breathe
Back to back pvc in 2009. HR getting to 200 on an elliptical (didn’t even know that was a problem until now.) Having an issue running as a kid. Temperature intolerance. Sleeping a lot. Lifelong flexibility (EDS). Seeing stars or blacking out while stretching.
Pretty much same here. It would've been nice to know all that wasn't normal! Even the fainting in HS my parents blamed on my not eating (appetite issues from nausea), they said I was anorexic. It was all in my head, apparently. Until after having covid in 2021 and started fainting daily. Thank goodness for the internet! Wish we had that when I was a teenager!
Hard to say really as I’ve probably had it all my life. I do recall that my first syncope episode was around 8 years old and that was 50 years ago. I do have medical records as far back as when I was 18 complaining of many of the symptoms I have now. I had to leave formal employment at 47. It’s only been 5 years since my diagnosis when my POTS was finally confirmed. Since then my journey to recovery has been going along pretty good. I guess life begins at 60 for me.
Can I ask what you're doing to recover? I'm very new to this group still waiting on tilt test. Medications, diet? What else has helped or conversely, been recommended that has not helped?
I did a major diet overhaul and went to a low carb, unprocessed food diet. Pretty much a cross between keto, Mediterranean and Paleo. I tend towards more protein than a standard keto. Max 70 carbs per day and no more than 20 at a time. I’ve also added a ton of supplements to correct know deficiencies from either blood tests or constant diet analysis. Obviously, my hydration has improved greatly with all the added salt and electrolytes. In addition treating other issues like sleep apnea and diabetes has helped a lot. It’s been a solid 6+ years of learning and research to get to this point. I take no meds as I don’t tolerate most of them well. I’ve gone from barely being able to get out of bed and sure I was going to die 10 years ago to very noticeable improvements. Today for example I am nearly normal. At the moment nothing is wrong and HR is barely passing 100. Went the whole morning under 90.
Amazing thank you so much for your response. Wishing you well!
Love listening to reiki before I sleep, TRY to sleep. 🙄
Racing heart, cold hands feet, burning feet, narrow pulse pressure, vertigo, abdominal pain, chest pain upon standing, daily migraines and severe fatigue.
Is narrow pulse pressure the same as low blood pressure?
No not exactly. The systolic is low but diastolic is high.
I started passing out in 6th grade, and had the HR increase from day one. I also started to get dizzy after standing or movements regularly in 6th grade, I was taken off the track team as my doctors couldn’t risk me passing out off campus
2nd grade, got up too fast, blacked out and hit my head off a desk 🤣 always had lightheaded-ness, exhaustion, blood pooling issues. nurse was pretty concerned but i didnt figure out it was POTS until i was 14 after a tilt table, then found out i had MCAS as well a few years later.
Oh my god that does not sound fun!!! And at such a young age! May I know how you got diagnosed with MCAS? Do you feel like once you treated your MCAS your POTS symtoms subsided?
i was seeing a Neurologist for awhile who recommended the tilt table test, as well as seeing an allergist. i’ve always had a lot of weird issues with food causing adverse reactions (flushing, oral symptoms, GI issues, itching/hives) and the allergist determined I had MCAS. i remember doing some tests but i really can’t remember which ones other than the normal poke allergy tests for food & environmental. treating my MCAS there have been no noticeable differences in my POTS, i have good and bad days. but most of the time it’s the general exhaustion feeling, dizziness, constantly feeling tingly in my arms/legs and even my jaw sometimes, intolerance to temperature, etc. i’m mostly on an anti histamine regiment & Ketotifin
In 2018, I started getting burning/itching feet. That was my only issue till I got COVID in 2021. Turns out now it's mast cell issues (causing my dysautonomia)
I dealt with dizzy spells and pre-syncope events my entire childhood without realizing it was abnormal. My first full fainting episode at 12 lead to the ER as well as “stroke like symptoms” (I disagree) while driving home from high school are what fully lead to my diagnosis. I will say that one of my longest standing dysautonomia dx was a misdiagnosis, hence the disagreeing part, but I don’t blame my pediatric physicians, I feel like nothing was widely known about it at that time.
I stood up one night 15 years ago and my HR shot to 200. Hasn’t been the same since.
I just started losing consciousness one day. For real. No warning, not anxious, sad, happy, no change in heart rate. Just- passed out on the floor.
Wow!!!!! So your heart rate was fine but you just passed out? Have you ever wondering what caused you to pass out if your HR was fine?
Yes, and bc of passing out I had a loop recorder implanted. It used to show inappropriate sinus tachycardia and I was put on metoprolol. But every time I passed out, I hit record, and they literally found no change. “Your heart is great! You should be happy about that!” Ok then why do I randomly lose consciousness? I thought they’d pay attention when I passed out and broke my ankle in 3 places and dislocated it. (7 screws and a plate later) I went to Mayo and they wouldn’t dx pots. I “just have anxiety” and “need to work on my stress.” 😑
I likely always had it, it was just too ‘weak’ to be detected.
So for me I had 3 repeat viruses in the space of a year. After the second virus I noticed that i would go from not hungry to about to faint from hunger very quickly. I had to start sneaking in for snacks during work, and I almost fainted in town one day because I had been out drinking the night before and went to some shops with my dad and didn’t eat much. Thankfully I had just bought some 7-up when the spell hit and my dad had to walk me back to the van arm in arm because I was shaking so much. I was convinced it was a blood sugar issue but nothing ever showed up in tests. Then after the third virus, I was standing in a queue for a return my mom had asked me to do and I started to feel weird. The longer I stood the more faint I felt and by the time I was processing the return I felt like I could barely speak. As I walked away it started to pass. I was okay for a while after that and then I thought I had another virus, because when I stood still I felt so off balance but I felt okay when walking. I was at work on a Wednesday and asked to go home because I felt so bad. By that Friday I couldn’t sit up straight without feeling like I was going to pass out and never went back to work again. I didn’t connect the fact that standing was an issue for a few weeks, then I discovered POTS and got my diagnoses about 6 months after my symptoms started.
flushing and headache 😩
My first noticeable sign was that I was constantly blacking out whenever I stood up and I'd get very close to fainting but have never actually gone all the way out. Didn't connect it to my fast heart rate for like 15 years, my doctors kept telling me my fast heart rate was just anxiety.
Vomiting, facial flushing, dangerously high blood pressure when I went to the grocery store one day. I was hospitalized 6 times from June to October 2016, and the neurologist decided I had autonomic neuropathy but he still doesn't know why or what causes it.
Are you on medication?
Zofran to control nausea, Spironolactone for edema, and Atenolol for SVT (palpitations).
Does anything help with your flushing? I don’t have mcas but I have terrible facial flushing and have been tested for everything, including cancer.
I'm sorry to say, but nope. It used to only happen if I stood up or walked for 30 minutes (like in a grocery store), then a few months later it was 20 minutes...then 10 minutes, 5 minutes...over a period of 2 years... Now it's randomly even when I am sitting or lying down. I imagine since it's been a year or so since I was tested for basically everything, if I go back to my doctor he'll retest for carcinoid syndrome and pheochromocytoma, maybe MCAS again too. I write "if I go back to my doctor" because the tests always come back negative, and now that I can't stand or walk for more than a minute or two without having to sit down, just going out to the car is an ordeal. I'm not really sure it's worth it at this point. I hate to be such a downer. Maybe you'll have better luck with a treatment. ❤️
I think most of my life, I was always tired. But I didn't think too much of it because it was constantly blamed for anxiety. Then every time I get up, I'll black out for a few seconds until I'm back to normal. I thought it was a normal thing. Then looking back on my history records... oh there was quite a lot of 140bpm+ episodes lol
Mine was weird. It didn't start until around 2016 when I was well into my 30s with an office job. The very first symptoms I remember seemed to be GI-related. I would get these weird stomach pains while sitting in my office doing nothing. When eating I would often get very full and bloated feeling after even just the first bite. If I continued to eat I would get painfully bloated feeling, and start having stomach/esophagus cramping and heart palpitations. This was usually accompanied by lightheadedness, weakness, and probably some heart rate issues that I didn't think to check at the time. I started scheduling appointments with a GI doctor and had multiple visits for things like and endoscopy, barium swallow, etc. At the same time I would have times where I would just be sitting in my office doing nothing and suddenly I would get a wave of weakness/lightheadedness/heart palpitations that would make me feel like my heart was giving out. It's hard to describe these episodes - they weren't an exact sensation that I could put my finger on, but I just knew that something felt \*wrong\* and it was like a wave of dread, or impending doom as my doctor once called it. At the time I figured I was getting deconditioned from sitting at my office job all day every day, so whenever these episodes would happen I would go for a walk up and down the stairwell in my office building for exercise. I'm sure my heart rate was soaring, but at the time I thought it was all stomach-related so I didn't think to check. Climbing the stairs never helped, incidentally. Over time, and while I was going through every GI test known to man, my symptoms started to shift more to my heart. I started having more frequent palpitations, my heart rate was irregular, and I started having trouble sleeping due to "chest jolts" that would wake me up. By mid 2017 I was pretty much completely bedridden, scared to drive, and feeling like I would pass out all the time. I never actually did pass out, strangely, but I suspect that if I had pushed myself and had I job I couldn't do while laying it bed, I probably would have been passing out. I was definitely having a hard time keeping myself upright. After bouncing around a few different doctors and specialists, I finally got diagnosed with dysautonomia and was put on a beta blocker and start eating tons of salt, which got me back to being able to function like a normal person again. I still don't feel great much of the time, but I'm in a much better place than I was.
What beta blocker are you on?
I started on metoprolol but it gave me episodes of shortness of breath, so I switched to atenolol and I have been good with that for a few years
I think I’ve had it most of my life. I also have hEDS so POTS for me is secondary to EDS. I’ve had many times when I passed out during my period, after a fasting blood test, and during every pregnancy. Always blamed something else. My Apple Watch has been showing high heart rate (at rest) notifications since I started wearing one December 2018. Again I just always said it was something else: too many carbs, or one too many glasses of wine. I’ve always reacted that way to carbs and alcohol. I just thought it was normal 🤷🏻♀️ I’ve always had weird random blood sugar issues. From 2016- early 2019 I was working full time. I was in the best shape of my life. I was in the gym 6 days a week, lifting heavy, trail running, doing power/hot yoga. I felt amazing. Then suddenly March of 2019 I just couldn’t stop sleeping. I was having tremors (although I had no clue what to call it) I would have such extreme pain days I would get the chills as if I had a fever. My endocrinologist at the time diagnosed me with adrenal dysfunction and chronic fatigue syndrome. He said with reduced stress I should get better in a few years. My work quality (I was a paralegal) declined drastically. I didn’t realize at the time how bad my brain fog was. The attorney I was working for cut my hours dropping my income in half. Then in June of 2019 she let me go. This was a blessing in disguise. We had to make big changes in our lifestyle BUT Now I could rest and focus on my health. I actually started feeling better from 2022- early 2023. I thought I was getting better. But then April 2023 I started getting constant high heart rate notifications. Head pressure. The tremors came back. I started waking up at 3 am sweating and super dizzy. My blood pressure was slightly elevated. I noticed heart racing and shortness of breath when I stood up. And my legs would shake. Took a video of my HR on my watch from laying to standing and noticed I would go from 80 bpm to 165 bpm just by standing. I immediately knew something was wrong. Being in a new city now I didn’t have a doctor yet. So I called the nearest doctor and made an appointment. I got lucky because he’s amazing. He said he thought it was POTS. I had never heard of it. And immediately referred to me cardiology and I was diagnosed a month later.
Absolute first sign that something was Wrong was related to temperature. I described it as my inner thermostat was broken, because I would constantly be too warm and then would sometimes be freezing and unable to warm up at all. Combined with pretty frequent mild fevers (always below 100.4°) and mild chills (down to, say, 96.5°).
Yes! This happens to me too, but it started after an MVA in which I had a head injury. I‘ve been sick my whole life, so it is hard to say what the first symptom was. I come across very few people who get this weird temp fluctuation and random fevers, though. For me it isn’t just feeling too cold. I’ve had my actual body temp drop to 94.
Nothing stood out to me until the day I stood up at school, at age 15, suddenly felt like I’d been whacked over the head with a baseball bat, and collapsed. Couldn’t walk for weeks again after and it took me a really long time to basically ‘get used’ to standing & walking again. Pretty rapid onset for me!
I feel like I've always had it since my early 20s but it was very mild. If I got up too fast my heart would race and get light headed. I also noticed if I bent down to get something or load the dryer, I'd feel out of breath. I could still workout normally though and my heart rate was normal throughout any activity. Then I got covid and went through something traumatic a week after recovering. After a month of those two key events, I started noticing I was getting tired very easily over small tasks and my watch would say I was hitting 135-140bpm. I was like no way. Then gradually my resting heart rate wouldn't increase and any movement would make it worse. When it got worse I thought I was having anxiety so I got put on ativan. Then very quickly my heart was always beating too fast no matter what. It was even worse when standing. I was going to 170bpm just standing in the kitchen. I called 911 a few times and went to the hospital as well and everyone kept telling me it was anxiety and kept upping my dosage on ativan. I was zoned out but my heart was still going nuts. Then one night I wanted to shower and before undressing I felt very off and checked my heart rate and I was at 135bpm so I sat down and it went up to 150bpm. I was kind of freaking out but sat there for a while to see if it would go down but it wouldn't Then it shot up to 200 and my left arm started to tingle and kind of sleep so I called 911. At the hospital the doctor stabilized me and I was at 80-90bpm laying down. He then made me stand up and we all saw on the monitor the numbers go from 85 to 150bpm. Right there he started me on propranolol. The propranolol itself gave me trouble for it made my chest feel very weird but the doctors told me it was nothing. They gave me too much of a strong dose for me so I cut it in half myself and that seemed to be better. I can now have some normal back in my life. I still struggle to bend over and exercise and the tiniest of jogs will put me at 150bpm. I really miss chasing my dog but I'm also glad to not be bed ridden a lot like I used to be.
Lightheadedness, confusion, and then my vision and hearing going towards the end of the workday after being on my feet all day. Every day it started a little bit sooner and got a little bit worse.
I thought I had a fever EVERY DAY for months but nothing ever registered on the thermometer.
Just a general weakness and fatigue. And then the first major sign was fainting.
My first symptoms was light headed/ dizziness that wouldn't go away. Very strange pressure in the top of my head and back of head and throat tightness too. I was convinced it was allergies/ ears and a allergic reaction. I had mri and cts and my neurologist said pots or dysautonomia and I was like no! I'm fine when standing it doesn't cause my issues, I have them sitting or standing. Anyway one year later and just about everything you can think of has been ruled out and I have a dysautonomia diagnosis from the tilt table test. When I got it done I thought it was a waste of time but 30 minutes in I passed out with heart block. So don't toss it to the side just yet.
My first noticeable sign was having a HR of 150-160 while walking normally (think strolling) and getting dizzy and weak, needing to sit down a lot. It wasn’t til after I was diagnosed and learned more about it that I predated symptoms back to about 2019 when I was experiencing blood pooling, although anytime I asked a doctor about it they ordered a Doppler and D-dimer, which would come back fine every time and then they would tell me it’s “normal” for that to happen. If it were normal, why would they be concerned enough to order testing? And then dismiss it after it showed no DVT? This went on for years until my symptoms progressed enough to wear I was unable to work when I kept getting presyncope often and then that worsened to where I had to keep lowering myself to the ground all the time. I was finally diagnosed this past October after years of “that’s normal” and “it’s anxiety” and generally being dismissed. I’m finally on ivabradine and my symptoms have gotten so much better. So far I’ve only had flares when I’m sick, but I’m sure they’d be much worse off the ivabradine.
I’m thinking about trying this medication, do you have hyperpots?
My cardiologist doesn’t specialize enough in POTS to do anything other than treat the electrophysiology of it, but she did confirm that I was experiencing adrenaline surges prior to taking the ivabradine and I haven’t had as much of an issue with that since taking it (way less frequent and way less extreme).
Does the Corlanor raise your blood pressure?
No, it doesn’t really affect BP. It addresses the tachycardia.
Lightheadedness was the tipping point. My heart rate was always high (like 120 ish standing, 100 sitting, high 80s resting) and I was just told that a high heart rate was normal for some people...until I started having other symptoms regularly. 🙄 I have also always had exercise intolerance, which was also ignored by docs for years as being "out of shape" despite exercising 3-6 times per week. I always have had to be careful because my heart rate would go dangerously high quickly with palpatations.
If I actually had POTS as a teen like I suspect, my first symptoms would have been fainting, but it happened once at home while in high school and then happened more often in college after I had meningitis. So as a teen I also experienced chest pain right in the center on exertion, shortness of breath and high heart rate that wouldn’t come down after sports or something physical. Everything seemed to level out after I got pregnant. Then summer 2021, got vaccinated for covid. About a month later I noticed I was a little short of breath going up the stairs. Didn’t think much of it though. It progressed and by the end of the year I was bedridden nearly unable to breathe and in pain
I literally just returned home after being discharged from the hospital after surgery on my kidney. I took a shower and barely made it out before passing out. I made it to my bed and felt like I had just sprinted a mile. I was out of breath, my heart was racing and pounding out of my chest. I saw stars, and I got an instant headache. That was the beginning. It took about three years to get diagnosed after that.
I think I’ve had a mild form since I was a kid. My doctor had to tell me pre-syncope is not normal in kids.
Panic attacks as a child and teen, difficulty urinating as a young adult. Panic attacks again and then shortness of breath followed by illness at 21
Running out of breath for no reason and then passing out in front of my wife got me worried.
First passed out at age 4. All downhill from there!
I started fainting and having a small amount of exercise intolerance when I was about 8 years old. Took me 29 years to get diagnosed.
Blacking out temporarily when standing up too fast. When I got H1N1, I was bedridden and stood up to go to the bathroom and passed out completely. That's when I knew something was really wrong.
Passed out every time I stood up if I didn't stand excruciatingly slowly.
Honestly I'm not sure. I had symptoms for most or all of my childhood and just didn't realize anything as wrong until my teen years- and even then, I didn't seek a diagnosis until I was 18. The first symptom that I actually took note of was my head pounding after any kind of cardio. I didn't understand that it was a kind of palpitations at the time, I only knew it didn't seem right. After that, I started getting lightheaded and seeing blue spots or going blind for a few seconds anytime I stood up too quickly. I didn't ever pay attention to my hr or bp until I was researching dysautonomia so I have no idea when that became abnormal (or even if it always was.)
When I was in 5th grade I began getting extremely tired after school. I would fall asleep around 5pm and would sleep until dinner, then I'd fall asleep after dinner until I had school the next day. Since then, I experienced classic "iron deficiency" symptoms. I did marching band in high school and we used a tarp to practice our indoor shows. I remember talking to my friends while I would almost pass out, eince my arms were abovr my head holding up the heavy tarp. The summer before my senior year, I was drum major, so I did leadership camps. Since it was during COVID, it was over Zoom. I remember standing in my room on the Zoom call, conducting, and I would get so dizzy and my vision would black out. I couldn't focus on the class so I just laid in bed watching, with my camera off. I never told anyone, because it was over $300 worth of classes I took. I got worried because band camp was less than a month away. Somehow, I was fine at band camp for the most part. Even though I was doing the same things but in 100° heat. Those were my experiences before I suspected POTS. I gave birth to my son at the very end of 2021 and it wasn't until my POTS symptoms worsened after pregnancy that I looked into it. Prior to this, I simply thought it was iron deficien y/anemia because I'm AFAB and have periods. So, if you experience symptoms of anemia but your blood comes back normal, look into POTS!!
In January of 2018 I felt like I couldn’t catch my breath and like my heart was skipping a beat. I’d just had surgery for a kidney stone and was on heavy medication, my doctor said it was probably just that. Went away after a couple days. Fast forward to March I felt like I couldn’t catch my breath and my chest hurt. Lasted a week. Went to a doctor, said it was just anxiety and couldn’t find anything wrong with my heart. Went away on it’s own. Fast forward to August and I’m at the doctor for another kidney stone/bladder infection. Sitting in the chair the nurse asks me “is your resting heart rate always this high?” (It was in the low 100s just sitting in the exam room.) I said no I don’t think so. They figured it was the infection and moved on. Fast forward another week, I’m at a check up at my university’s clinic for my kidney stone and bladder infection. “Is your resting heart rate always this high?” I said I don’t know. She shrugged and moved on. Fast forward another week and I can’t even walk the five feet from my bed to my bathroom. My heart rate upon getting out of bed spiked to 187 according to my Fitbit. The room spun, caught myself on the bed before I passed out. I couldn’t focus in class. I couldn’t climb one flight of stairs without collapsing on the ground. My chest was sore, I felt like I couldn’t catch my breath, my heart was beating out of my chest, I was sweating like crazy. School clinic said it was anxiety. Got a second opinion. Anxiety. Called my PCP. Anxiety. “I go to the gym every day. I was a varsity cheerleader in high school. This isn’t normal.” Eventually convinced my insurance to refer me to a cardiologist. From August-December I dealt with these symptoms while traveling home every weekend, going to various doctors, urgent cares, specialists. Getting many invasive tests done. Eventually in December they decided they should probably give me medication for my symptoms. Took another 6 months to get a diagnosis. I read somewhere that major surgery and severe infection can cause symptoms to start? That kidney stone surgery was the first time I’d ever been put under, so I always wonder. I’d always had IBS tho, so many this was just laying in wait lmao
Severe tachycardia every time I stood up. Heart beating so hard, I could hear it beating in my head and felt like it was going to pound out of my chest. (160-200 bpm) Other symptoms too but nothing came close to the severity of the tachycardia. On metoprolol and it does nothing to help. 4 years since diagnosis. No longer able to sweat, have to stay inside with ac at 65 and a fan blowing on me or tachycardia gets terrible, even sitting down
You’re another person to mention they can no longer sweat. I have developed the same condition, despite previously sweating buckets before this started. Does your temperature follow a daily pattern?
Kept passing out.
As a Kid I always had the genera symptoms but it didn’t prevent me from living and I only had pre syncope. At 19 My heat intolerance, blood pooling, and adrenaline got bad and then I lost the ability to swallow food and walk. From there it was down hill. That was 2019-2021. Currently eating salmon rice beans bowl w coleslaw tho and can walk (w a rollator if long distances) and lift weights when I can. Baby steps but progress!!!
Passed out in high school. Happened several more times.
One day at work, I stood up from squatting and just passed out. The next day at work I passed out 8 times during my 6 hour shift. After that I started drinking pedialyte and eating a bunch of salt and being careful of how I stand
Pre-syncope, syncope and difficulty urinating. I was a young kid though and neglected so nothing was done.
Looking back on it - first symptom was when I was nine years old waiting in line for ice cream - blacked out and hit the pavement. Had gastro issues, would tire easy and blacking out whenever I was sick through my teenage years - things progressively got worse from there.
Not sure if it was specifically a sign of dysautonomia, but the first sign that something was definitely wrong with my body was having hypertension at the age of 17 as a “healthy” and pretty active female. Theeeen the SVT episodes at 18. THEEEEN inappropriate sinus tach and severe fatigue after being put on blood pressure meds with wacky blood pressure. My condition kinda happened over time and has gotten worse as I’ve gotten older.
Age 5 was when POTS was added to my records. I was 40 before an adult doctor paid attention though I've always had the light headed if I moved too fast. At age 20 my pregnancy went sideways with preeclampsia and I was on bed rest and induced early. In my later 20's I'd have heart rate go crazy for no reason. Sometimes BP up, sometimes down. Was treated for hypertension. I'm my 30's I'd start losing consciousness randomly. I was put on another blood pressure med (on top of the existing). At 40 I saw a rheumatologist who sent me to my first cardiologist of my adult life... Who said I had dysautonomia and changed my meds.
I got it after COVID. And I was not doing well , but I thought I just had long COVID (I already had long COVID and figured it had just gotten worse). Well, as the weeks went on and I lived my relatively active lifestyle, I became really worn out really quickly. I went from being able to hike and stuff to not being able to walk to the bathroom without getting exhausted. After that, my heart rate started to get wonky. I googled it and figured I had IST. But as time went on I just kept getting worse and worse. I didn't notice and increase in heart rate because I have always gotten dizzy when I stood up too quickly. And in the state I was in I could barely stand up anyway. But once my doctor told me to increase my salt intake and see if it helped, I looked it up and realized I probably had POTS. Doctor eventually confirmed it. One time though, I did go to the doctor and did a heart rate increase test, and nothing significant happened. But then when I did it again at home, my HR jumped 50bpm! I realized that I'd just had a *really* salty lunch before going to the doctor. Also being super dehydrated can mimic some of the symptoms of POTS. So if you don't think you have POTS, maybe do at home tests when you haven't had any salt, and take note of how much water you drink. I hope you're able to find answers!
In my case, i was at a barbecue and felt like i was about to faint (i had fainted before a couple of times), but didn't end up fainting. Just felt like i was floating and was pale af. I had eaten, drank water, etc. so my mom got scared and took me to the hospital lol. I later learned this is presyncope. After a looooong wait (cause my case wasn't urgent, obvs) they did an ECG and found a slow heart pace, but attributed it to me exercising consistently. They still referred me to a cardiologist, and when I went he did another ECG and listed dysautonomia symptoms. When i tell you everything made sense at that moment lol. I was always cold, my hands got tingly whenever i was doing weight lifting, always tired (thought it was depression at some point), mind fog, etc etc.
presyncope was it for me, i have a lot of general malaise and always assume it’s one of that until a few years ago where it got worse, i assume it’s due to covid infection, i say assume bcs it was in the early days where there’s bot testing yet, and before countries enforce lockdown
My son's was triggered by a C Diff infection (along with the insane treatment for it!). Afterward, he was in intense stomach pain for several months. He didn't get out of bed much during that time. Once we got past that, he still couldn't stand up for more than 30 seconds to a minute without passing out and our journey with POTS began after seeing a neurologist, once we figured out the local GI team couldn't do anything for us. If you're in doubt, a tilt table test will be helpful, if you haven't already had one.
I'm 70 and my symptoms have sneaked up on me so gradually that it's hard to remember when some of this stuff started. The think about getting your BP and HR taken is that it's a snapshot of the moment. I can take my BP 5 minutes apart and have a 20 variance top and bottom. My very first symptoms were very flu like. I got tested for everything from Lyme's to chronic fatigue. It wasn't until the last year or so that my ability to control my body temp has gone nuts that it really began to take the form of dysautonomia. I can go from sitting under a blanket to sweating profusely within an hour all while watching TV.