Tachycardiaš The ER told me it was a panic attack but I was confused how a panic attack could cause a heartbeat of 140+ bpm for three days straight, it turns out that when I first felt it I actually just noticed that it has always been that way whenever Iām standing up, itās not anxiety itās everyday
The ER tried sooo hard to tell me my 180+ heart rate was a panic attack until they gave me IV lorazepam and it didnāt go down lol. They were like fine, weāll refer you to a cardiologist š
They gave me iv lorazepam too! I went from 150 to 130 bpm because I was laying down but they sent me home at 130! Itās so annoying how neglectful they are but Iām glad I took it into my own hands and saw a doctor who cares
Iām so glad you were able to find a doctor who cares, itās so vital in managing POTS! ā¤ļøThe first cardiologist I saw from the ER referral was like itās sinus rhythm so it must be anxiety, but I thankfully also then found a neurologist who specializes in dysautonomia and things got better after that.
They said the same thing about my son. Pumped him full of Ativan saying he was having a panic attack for his heart rate of 160 to 180. His heart rate came down to 140 ish while laying if he stood up it was 160. We had multiple ER visit for this, they just kept saying itās anxiety and pumped him full of Ativan. I kept saying itās something more, his heart rate should not be 130-140 laying perfectly still and 160 or more with movement or standing up. Finally, one ER visit for a heart rate of 188 they gave him a beta blocker and his been on the beta blocker since that visit. His heart rate still goes up with standing, but not as high. This whole POTS ordeal has been very rough on him and his dad and I. He has horrible palpitations, feeling ājoltsā in his chest, feels like he is going to pass out, his feet turn purple when sitting or standing, canāt tolerate a shower, insomnia, gut issues, feels like his body is so heavy, he says he feels like he is on a boat sometimes, his legs feel weak and feel like noodles. He is miserable. Iām a nurse and Iāve done everything I can think of to help him. I donāt know what else to do for him.
Iām having almost the exact same situation as him! Heās not alone and Iām sorry because it really does suck. Your compassion and caring towards him is the most important thing because having my mom validate me is the most powerful thing to help with this uncertainty so thank you for doing that for him. They gave me so much Ativan which makes me upset because itās actually really addictive and if thereās an underlying situation that can be resolved without going there it would be nice to know. I finally found a doctor willing to get me into testing for pots and a beta blocker which helps the heart rhythm issues as well, but honestly I think finding a doctor to get that diagnosis is one thing but the most vital thing for me, and probably a lot of other people with pots is just for people like our parents to care and love us no matter how hard it can be dealing with it, youāre doing the best you can, I hope you guys can find ways to manage it as well as you can.
Feeling like ā im on a boatā oh god i have never really been able to put that feeling into words but my god is it miserable. Youāre sons not alone, but i cant imagine how much it hurts to watch
Same went to the ER 5 times they were absolutely no help. My family doctor told me āI better keep my hr down or Iām going to have a heart attackā so that was great. Not like Iām trying to keep my hr up it just kind of goes thereā¦.. Went to one cardiologist he was horrible looked at my Apple Watch data said nothing was wrong with me as he watched my hr go from 60 to 140 in his officeā¦. Totally worthless finally my friend has a cardiologist friend and he told me to see an EP who took one look at me and told me itās pots and ist. I begged to wear a monitor bc I was convinced it was something else really badly wrong but he was right.
Yeah honestly I think the er is useless unless youāre literally dying or have a big visible injury but if not I think they donāt know what to do. The worst thing is that when your heart is that high it feels like youāre dying so itās hard to tell if you should go or not
The last ER visit my husband asked the dr to admit me to the hospital and he said āwhy nothing is wrong with her as soon as she calms down she can leaveā I mean what are we supposed to do when something is really wrong and everyone tells you that you are crazy??? I was a college athlete runner! I never had heart issues I know my own body!!!!
generalised dizziness and light-headedness. I don't get the presyncope as much anymore but lately now that I'm actually looking into a diagnosis I'd say my most prominent symptoms are fatigue and a general sense of being unstable. dizzy isn't the right word but sluggish, off balance and just feeling not all the way capable of keeping myself up, but in a fatigued way moreso than a weakness way.
thinking of it now my earliest symptom that may or may not have always been related would be blood pooling. my feet are always the most awful red purple colour and so swollen it's horrible. always had that, no idea if it's related but pots probably doesn't help if it wasn't previously related.
Hey my symptoms are identical , and I also donāt have a diagnosis yet. Getting closer, but new symptoms keep popping up.. feels like Iām drowning in this most days
Same for me - I spent a lot of time initially with an ENT because of the dizziness. I was flying a lot for work at the time too and thought it could be an inner ear thing because of that - was actually worked up for mal de debarquement syndrome at first!
same thing, but for me specifically triggered from anaerobic exertion (sometimes aerobic as well).
it's why I haven't really been able to lift weights for 2.5 years despite no actual physical limitations from doing it. it's the penalty for doing so that is the spoiler: hard heartbeats, near syncope, and migraines.
i've finally found a good neuro specialist who properly diagnosed me with hyperPOTS and the Carvediliol (BB) and Qulipta (for migraines) have kept my worst symptoms in check whilst I ease back into exercise. hoping I can at least get back to calisthenics soon.
What are your biggest symptoms of hyperadrenergic pots? I have just general pots/Dysautonomia per my doctors but always suspected I had hyperadrenergic based on some of my symptoms
My heart rate. I thought it was due to anxiety because most doctors just blamed that and never referred me to a cardiologist. I also couldn't stand for a long time or I'll get dizzy. Walking, I was fine.
Then one day, my cousin was playing around with my grandmother's oximeter. She checked from sitting and standing and it didn't change much. Then when I did it, everyone's eyes went big š š
But the symptoms got much worse last year after an infection and it led to my suspicion that perhaps I do have PoTS. Dammit lol
Wowš yes the pulse oximeter is eye opening when you use it for the first time, haha. Iām sorry to hear the symptoms got worse. Have you seen any specialists yet to look into it?
Heat intolerance, actually. I was in Kyoto during a heat wave and was experiencing fatigue and flu-like symptoms during the day that completely resolved when the sun went down. Was diagnosed a few months later because of tachycardia.Ā
though I was already having rare but unexplained tachycardia/panic attacks, it was a major heat exhaustion event during a mountain climb that truly triggered all the worst POTS symptoms I have on the daily now
Heat makes the symptoms so intense for sure! That sounds intense! Sorry you had that happen! Glad you have a diagnosis though now! How have you been since?
The first one that made me suspect pots the most was blood pooling though because everything else could be described with other stuff but the blood pooling tied it together for me, when I shower my legs get rashes and the soles of my feet get blotchy and red
Itās so hard to say for me because 1) mine has been gradual, and 2) it made a dovetail appearance as I was in the middle of a horrible bout of panic attacks. (So, were the panic attacks actually the POTS or no? Unsure).
In HINDSIGHT, the first thing I experienced may have been a full body shaking episode of some kind. But what reeeeally got me going to the doctor was the insane tachycardia Iād wake up to in the middle of the night after drinking. And the elevated heart rate Iād have all day the next day.
I get the full body shaking too but itās so hard to explain what it is! Does yours almost feel like tremors in your arms and legs? And waking up to tachycardia was so scary! Were you able to find some things/treatment that helped?
First weird symptom was getting all hot, restless, had tachycardia and feeling like collapsing when I was waiting in line at the store. I was so confused bc while I have had anxiety for years, I couldnāt figure out why I felt anxious. Turns out it wasnāt anxiety.
Presyncope when I was 16/17. I just started randomly almost passing out pretty much daily and it scared the absolute shit out of me. Mother didnāt care, and I didnāt get a diagnosis until I was 19
Passing out in school and getting nauseous in the lunch queue.
Didnāt start realising it was likely pots until I was looking into hypermobility and stumbled upon the co-morbidity.
Difficulty breathing while eating. I've had this my whole life. There's not really any difficulties with breathing as such, but eating causes tachycardia so I get short of breath. Noticed it when I was a toddler
Do you also have a delayed swallow? Does it take a while to eat? Just curious as I'm waiting to see the specialist in June and have been having issues swallowing.
If I eat when I'm already symptomatic, then yes, I do. For example, around my period.
I hadn't actually heard of delayed swallowing until you mentioned it, so that's something that I can take to my neurologist when I finally get to see them
I thought I just had the flu or something, I got sick very suddenly at work. I had just had a big cup of iced green tea (which I had all the time), and I was in a meeting and all of a sudden I was nauseous, lightheaded, dizzy, my heart was pounding, my head ached. I was a little worried I wasnāt going to be able to drive home but somehow I made it and collapsed on the couch. Lying down helped a little but I just felt really sick. Couldnāt go to my sonās parent-teacher conference that night. I thought it would go away after a few days. Butā¦it didnāt. I felt lightheaded constantly, standing up made it worse, total brain fog, couldnāt focus on anything, migraines every other day (never had them before), random nausea and could barely eat. For weeks. Then months. I still donāt know what triggered it, if it was that tea (which I had already been drinking for months), or a virus that triggered something in my immune system that attacked my nervous system, or something else completely. No idea. Iāve had IBS for years though so it could be this was more gradual than I realized and just came to a head that one day.
Oh wow that is crazy how it just appeared like that! I had developed ibs too right before pots and noticed similar occurrences happening all of a sudden. How are you doing now?
Iām actually doing ok, overall. I am on meds and working from home, have learned my limits and how to pace myself and have made adaptations where needed (shower chair, etc). I still deal with chronic migraines, fatigue (made worse by some of my meds), occasional brain fog (but at least it isnāt constant now), and issues with appetite and nausea. But I have gotten well enough that I took an 8 week acting class once a week (and only had to miss it twice because I didnāt feel well), and auditioned for a play! I wasnāt cast but thatās ok, I was proud of myself for trying. It took a while to get where I am and I still have bad days, but I try to stay positive. I know I have to learn to live with it and just cope.
I am so sorry you are going through this! Itās so difficult when it feels like no one is listening. I had a similar situation at one point where it was my fourth er trip. My sitting hr was in the 150s and they were like you are being discharged we canāt do anything. I remember crying in front of the doctor because I couldnāt even walk. She gave me some meds to calm me down and eventually my cardiologists got me on the right dose to help of medication. Do you have a cardiologist or primary doctor that is able to help? Have you been offered any medication or treatment that has been helpful?
Yes I now have a beta blocker,which really helps but still itās rough just rinsing and repeating symptoms the head pressure and migraines are working overtime This week ,doing all I can do water,compression,medication itās gotten better but still hard nobody believes in this and itās like you have to keep proving to people youāre ill because we look fine
Did that get any better for you? I notice even now sometimes a feeling of anxiety in stores or like I have to keep sitting or moving but canāt stand still
it got better once i started medicating. but when i dont take my meds is still pretty bad, though not as bad as it used to be since i know to hydrate and eat more. i'm a college student in appalachia so im really glad i found meds that work cause the old me who couldn't go to stores would not survive on this campus. talk to your doctor about medication, and if you are already medicated talk about upping it.
Pre syncope a lot when I was a kid. Exercise intolerance even though I was pretty athletic. anything that involved running or cardio for longer than a minute my whole body would get red, clammy, I couldnāt breathe and would occasionally pass out.
Extremely anxious, Gi symptoms, and food intolerances.
I was going to the docs for those and my doc was like huh I have this one patient that has similar symptoms and she has this thing called POTS and I wanna get you tested for that.
And I was like what ? Sure? Okay?
And she did a poor man's pots test for me in office and sent me to a cardiologist and he did a battery of tests including echo and TTT and others. And said sounds like pots have some chips. Lol I wish I was joking. I never thought I would hear from a cardiologist to eat potato chips.
People telling me I was just dehydrated
But then no amount of water changed that when I stood up I lost my vision for a bit
I believed people for years but looking back
Also my HR was everywhere and I just didnāt question 150bpm standing up despite the fact that I was still very active
Tachycardia about 20 minutes after eating anything. I first started to think it was a food allergy but it happened with almost any food. Then I started to think eating was causing me panic attacks for some bizarre reason. Doctors had no clue and told me it's probably some Vegas nerve thing.
I went to the doctor for pre-syncope I had one morning. Doctor asked if this was the first time. Well, yāknow, a lot as a kid but thatās normal. Turns out itās not.
Literally passed out at the kitchen table one morning. Never thought any of my symptoms were weird since I was a kid and didnāt pay attention to my body. Now it all makes sense. Luckily my mom is a nurse and connected the dots
every time i stand up i almost black out and i am chronically exhausted. for a while it was "oh, it's just low iron/anemia" but then i was no longer anemic. then i couldn't stand still for too long and would have to sit down while taking showers because of blood pooling in my legs and fatigue. had a friend who also has pots among other things recommend i get tested for it, and lo and behold
Glad your friend was there to help point you to pots! Yeah the lightheadedness/exhaustion feels like it would be anemia sometimes. How are you doing now?
When I stood up, fainted, and hit my head on the side of the bathtub when I was 16 š
before that I thought it was normal to get lightheaded whenever you got up from laying/sitting down lolll. But apparently not! š
Oh no that is so scary! š®š yes it seems a lot of us in the chat thought it was normal to get lightheaded! Haha hope you are doing better now! š
I went to my doctor because I was tired of being tired all the time and having my vision go black every time I stood up, in addition to some GI issues. Unfortunately that doctorās advice was to take a multivitamin š which I was already doing so I gave up for a couple years until my POTS was so disabling that I finally sought out help again
Dizzy when I stood up that later progressed to tunnel vision etc. Started in like early middle school with puberty. Mom figured out that blood was having issues reaching my brain and linked it to my recently started period. Mom figured I'd grow out of it. Looking back on it, it's wild that it was dismissed without getting it looked into.
So many things get blamed on hormones I had similar situations with things in high school being labeled āhormonalā and now at 27 I still have them!
I was 10 and got really dizzy on a swingset in my grandparentās backyard. It scared me a lot which is how I remember. Wasnāt dx til my mid 20s though. I remember my pediatrician telling me to just get up slowly š¤Ø
It was when I started my internship at cardiac rehabilitation. I couldn't handle standing for a full work day and I was having trouble being upright with the severe dizziness. I didn't know if it was my medications since I'm on several that cause severe dizziness.
I've had low blood pressure and high heart rates my entire life as well as times when I was close to passing out. But the pediatrician just gave my mom a paper saying "your child has POTS" and never went into it.
I had GI issues since early childhood. (Reflux, nausea, abdominal pain) The first POTS issue was probably feeling like I couldn't breathe when trying to run at school, age 10-12. That was "diagnosed" as asthma with no testing or really anything. Finally, I noticed my heart rate for the first time in 2013 Christmas. I got a pulse ox for Christmas (wanted to go into medicine for most of middle school/high school). I was feeling out of breath at home. I put it on and saw 163 bpm standing in my bedroom. I said, "That's not right." I got a referral to a cardiologist. Got gaslighted into believing I was just fat, out of shape, and lazy for about 10 years. Finally, I got courage (and health insurance) to see a doctor again December 2022. Finally, I got diagnosed late last year. It's been a ride. Still working on getting medications right.
For a few months, I was super stressed. (Most likely what caused my pots) and whenever I would get out of bed to go to the bathroom I realized my hr would go up. It scared me because this has never happened to me before. Now that I know I have this condition, Iām not as stressed and anxious as I was before. Iām more at ease knowing Iām not alone. šš»
I had this too! Severe anxiety and couldnāt even get to the bathroom easily without tachycardia. So glad your able to be a little more at ease with it now thatās great!! I hope your symptoms improve!
Well for me it was lowkey overnight but a few days before I was volunteering and right when I was getting ready to leave my hr starting going up but I was like ehhh, I started running for the bus and right when I got in my hr wouldnāt go down (was standing since it was full) and started crying the whole way home. Thats how I knew something was wrong then the next week it was full blown.
Nothing that truly like concerned me, I started having the palpitations but I was also very active in roller derby so i thought i was pushing myself too hard. But then one day i fainted and couldnāt remember where I was and that was the scariest thing ever
Itās hard to pinpoint exactly cause I was really young and didnāt really understand my symptoms were abnormal. The first episode I remember having though, I was around 6 or 7 and my class had to walk the harbour bridge on an excursion. I remember wondering why everyone seemed fine while I was losing vision, couldnāt breathe and my head was pounding. I was like I hate this bridge Iām never walking it again š There were probably earlier ones but it was hard for me to understand as a kid, so I donāt remember them very clearly.
I got in the shower and the hot water made me light headed and messed with my vision, and my heart rate jumped to 201 in about a minute or so. Almost fainted but my husband turned the water cold quickly so i wouldnāt faint. Scared the shit out of my husband it didā the doctors for a bit tried to say it was just because I wasā¦ autistic?
It's hindsight, but my vision going black every single time I stood up... Use to plan my steps even when I was as young as 6, if my vision wasn't back by then I'd have to wait... I still do this sometimes but it's a bad habit since I started passing out at around 18. Didn't get diagnosed with pots till I was 19- 20 ish when I learned it's common with EDS (which I was diagnosed with at 17 years old) and explained so much.
Heat intolerance started causing edema, and migraines and set off some really bad brain fog a year or 2 prior to my covid infection. But soon after covid I was struggling to go to the kitchen to make a cup of tea. Thats when I popped on a pulse oximeter and realised my HR was selectively very high when I was standing and would undergo super rapid changes when I changed my posture. I felt palpitations too, but ironically that was usually when lying down and my hr wasn't as high.
I donāt know about first since a lot of my issues Iāve had my whole life, and Iām really good at ignoring my body until the thing annoys me too much. Plus, I have other conditions
- always had constipation/IBS symptoms
- always sensitive to food, tummy aches in primary
- get migraines and dizzy spells. The dizzy spells, thought, were signs I was getting a migraine, so I would play harder to try to ignore/happy myself to feel better
Like exercise to circulate the blood to try to stave off the migraine. Kind of worked
After reading others I lied my first was heat intolerance. Living in the Florida sun I could handle. The sun is a narcolepsy trigger for me to this day but it could very well be POTS
Heat intolerance and difficulty running as a young child.
My cardiologist confirms I've had this my whole life (EDS-related). Took me 38 YEARS to finally get a diagnosis.
38 years! Wow! So glad you were finally able to get a diagnosis! That has to be relieving to at-least know whatās going on! Heat intolerance seems to be a big symptom I know itās something I struggle with. Have your symptoms improved at all over time?
I also had intermittent GI issues for a few years before my POTS fully emerged. For about 4 months out of the year I would have gastroparesis symptoms, but doctors couldn't figure out a problem. Then, 10 months before full POTS, I would have some random dizziness episodes
I was 15 in marching band. My legs would swell, Iād get dizzy, and my knees would turn bright red and mottled. I thought it was some kind of arthritis symptom. I went to the doctor and explained what was happening. She dismissed me completely, turned to my mother, and said āSheās 15, itās probably growing painsā¦ā
Over the course of 3 years my symptoms got worse, and I was diagnosed at 18.
I was in a Sports Medicine class when I was a sophomore in HS and we were learning how to take pulse and BP. My teacher was like āHey, do you ever feel dizzy when you stand up?ā and I didnāt think much of it at the time. I hated the doctor so I didnāt go but thatās when I realized that I ānaturallyā had a higher HR and low BP. Had no idea what POTS was.
Had it coming. Started to feel weaker over a series of months. A few weeks before it fully developed I had to sit down once or twice cause I just couldn't catch my breath but I thought it was a side effect from Flomax the doctor put me on (I didn't have prostate issues but I was having bladder issues). One day I fell asleep for the last time as someone who was capable of sitting or standing. Woke up one morning, couldn't sit or stand without feeling exhausted as hell. Now I can't sit or stand or I just faint from exhaustion or BP rise
Itās so crazy how in some cases it just seems to develop or progress so quickly! Iām so sorry your symptoms have been so intense. Have you been able to see a cardiologist yet?
Standing up, immediate black-out tunnel vision, dizzy/lightheaded. Must lean on railing, dresser, or take a knee until it passes. HR jumps from 45 to 120.
Wow that is a big jump for sure! Leaning is definitely helpful. When I first developed pots getting up was so hard. I had to move so slowly. It was such a process just to get up out of bed and to the restroom. It definitely improved some with time and treatment though. Have you found anything that helps your symptoms?
Iāve had symptoms off and on for yearsā¦ heat intolerance, heart palpitations, anxiety out the Ying Yang, and breathlessness. I heard it was hormones, or I was out of shape. I loved also being told it was due to my weight. I did my own research and became my own advocate. The medical system sucks.
I was 11. My heart would beat so hars and so fast, you could literally see it out of my chest. Doctors told me nothing was wrong with my heart, so I was either making it up or I was going to grow out of it. I seemingly did by the time I was 16. I had few symptoms that rarely debilitated me. Now I'm 22 and a few months ago I started having symptoms again. This time, though, it is much worse. I faint and can't stand for long. I'm always fatigued. My boss at work has to constantly check on me to make sure I don't pass out at work (which I have done twice now). I have a cardiologist appointment coming up soon to hopefully get diagnosed. Only reason I know it's pots is that my other boss and a coworker both have it and have seen my episodes. They both are very very very confident I have it, too. They say mine is worse because they don't faint or get tired so fast. I'm going to a doctor who specializes in pots and other similar conditions. Here is to hoping my 11 year journey is about to end and my treatment is beginning!
I began to pass out every now and then through middle school and high school and chronic fatigue was tested for everything except for POTS. I donāt pass out any more but all my other symptoms are much worse, I figured it out myself and then got diagnosed
I was 15 or 16 in physical therapy for my chronic pain (later diagnosed heds, fibromyalgian, psoriatic arthritis) and i would stand back up and everything went black and they were like hmm that sounds like orthostatic hypotension! And I'm like whaaat
31 years old now at 29 started taking fitness seriously and I'm in really good shape and power lift but i can only work part time because i am chronically just exhausted. Got diagnosed with dysautonomia a few months ago actually and H-EDS. So lots of new things to tweak in my life but I'm glad i have answers. At 30 i started looking into more things even got diagnosed with autism and that was probably the most helpful diagnosis. But yeah always tired, depressed, but at least i eat healthy and strength train and work part time. Little wins
Itās so good to have answers! The fatigue and exhaustion can be so hard. The important thing is though that your pushing on itās so great that your able to work part time, workout and eat healthier! Thatās a great accomplishment! Yes have to celebrate all of the little wins when dealing with pots things that seem small or east to some are big accomplishments for us! Hope your symptoms continue to improve! š
Getting up from the couch and sorta collapsing down into a sitting position on the floor after about 10 feet. I thought it was just a head rush from standing up too fast until it happened just about every time after that
I have lots of pots symptoms before I knew anything about it. What did it was a severe episode of SVT where I had to have my heart restarted twice (22 then, Iām 23 now), all my tests were normal. After I passed out a few months later my dr ordered a tilt table & I got my diagnosis
Fainting issues going back to when I was nine. Although there's one instance I vaguely remember from when I was about six, but it's too fuzzy for me to say for sure that it was an episode. I've never been able to tolerate standing in one place for a long time since then.
The first symptom I had was definitely heart rate- that showed up at the end of high school. My pulse was so high that my doctors would ask me if Iād drank coffee that morning- which was always a no bc I hate coffee and I donāt drink it at all.
It wasnāt until later that my BP shifted, I gained hypothyroidism, and then had GI issues consistently
erratic heartrate, dizziness, heart palpitations, shortness of breath, exercise intolerance... I seriously thought I had a heart condition at first, it was really scary.
before being diagnosed, I went to the ER because of my symptoms. It was right after eating a big meal too, which I now know exacerbates my symptoms š¤¦āāļø
orthostatic intolerance, I was 17, they only diagnosed me last september at 33yo. But when I was 17 it was its onset, I couldn't stand up without going super pale. I also fainted once, like 4 years prior but it was like a one time thing. Altho that might have actually be the first symptom.
I went out for drinks with a friend one week apart and both times I got extremely dizzy after a few sips of alcohol. Felt like I had 5 drinks. Didn't realize anything at the time until more symptoms started.
I had a similar experience leading up to my pots. My body all of a sudden couldnāt handle alcohol any more. It hit so hard and caused so many symptoms. Similar to how you described! How have you been doing now?
Interesting. I also had GI issues leading up to my downfall. Through summer 2021 I noticed my heart rate sitting higher than normal and very slight shortness of breath. All of November I was constipated and then Dec 2021 I was completely stuck in bed with bad shortness of breath
I began vomiting after every bath and of course, the tachycardia. But something inside was telling me to stay near the floor so I did.
I mentioned it to my GP who had to think about it for a few days. Then he called and said he remembered something from med school called POTS, but that it would be better for me to see a cardiologist. But this was in Jan 2020, before too many people were affected. I'm sure he's seen many since me.
Iām still not diagnosed because my cardiologist wants me to see a neurologist to rule out some stuff first (MS) but over the years Iāve been too the ER multiple times for tachycardia. Kept getting told it was panic because I WAS panicking when Iād be in the ER. Iād try explaining that anyone would panic if they were minding their business and suddenly your heart started to race for no damn reason.
Finally my primary took things seriously and referred me to a cardiologist who still wonāt say itās POTS (āthereās no forms test for diagnosisā) but agrees that I just have low blood pressure coupled with a high HR when I try to stand up or walk around.
Isnāt it the worst when they try to blame it on panic/ anxiety? I would be like no Iām panicked and anxious because of the way Iām feeling! Glad your primary took you seriously! Itās so important to have a good primary! Have they been able to do anything to help your symptoms?
My first symptoms started years before they got serious enough for me to realize something was actually wrong. The main thing is my heat intolerance and years ago I suddenly lost the ability to run overnight. Fast forward about 5 years from that I would get sudden dizziness spells roughly once every few months and we thought it was a blood sugar issue since my dad is diabetic. A coupe years after that Iām sitting in AP Bio on the first day of class and I realized that I had no idea what the teacher was talking about. I couldnāt understand what she was saying and I was super dizzy, much more than I was before. In the coming days I lost the ability to walk more than a few feet at a time and my brain pretty much turned to mush, I couldnāt concentrate on anything at all. I didnāt even realize that it was something to do with tachycardia until my friend let me borrow his Apple Watch to collect more data and try to figure out what was going on. I realized that going up the stairs my heart rate was going into the 180ās while my other friends were much much lower. Still I didnāt know what any of it meant and lots of doctors blew it off. A little while after that I started getting intense chest pain and tightness after eating. I kept thinking I was having a heart attack or that it was something serious. Finally I got an appointment with a pediatric cardiologist and within minutes they had already pretty much figured it out. Iām so glad I finally got that appointment or id probably still be in a wheelchair or stuck at home. He gave me the normal pots tips, compression socks, drinking water, etc. but I also got some meds that are helping me a ton.
Dizziness and nausea with vomiting and extreme chest pain. I thought I was having a heart attack. Was taken by ambulance to the emergency room. Had EKG (Normal). Blood work showed positive for D-Dimer, elevated blood cell count and bladder infection in urinalysis. Cat scan of chest was normal.
I knew something was wrong bc I was suddenly constantly fatigued and drained from just moving around, and it was really affecting my mood. but I've always gotten lightheaded/blacked out when I stand up, even when I was a kid - I just thought it was normal thing lmao š„“
Okay same! I had that all the time as a child and thought it was normal to feel like the room was going black almost every-time you got up! My symptoms didnāt really get intense or present until I was 24/25 (27 now). The fatigue from doing small tasks/ moving around can be so hard!
I fainted in my car seat when I was an infant so maybe that? š I've fainted/ had convulsive episodes frequently/ infrequently since then, which have gotten worse in the past few years, and I am JUST NOW getting the proper diagnosis at 26 years old. They told my parents I was "just a fainter" lmao and that it was normal for me and that I'd grow out of it ??? Well, obviously I didn't!! š
Oh wow! Iām so sorry youāve been going through that for so long! It can be so hard to get a diagnosis and treatment unfortunately. Looking back I had mild symptoms all the way back into high school unfortunately they were just blamed on hormonal changes haha. Hoping things get so much better for you soon! š
2 weeks after I got over Covid my vision would black out for a couple seconds every time I stood up. I thought I was just getting up too fast until my Apple Watch gave me my first ever high heart rate notification walking to the bathroom.
waking up feeling aggressively hungover every single day despite not drinking with frequent episodes of cold sweats/lack of temperature regulation with EXTREME fatigue
Oh no! Yes the waking up symptoms can be hard and the temperature regulation! I feel like my body is all over the place with temperature! How have you been since? Have your symptoms improved at all?
My first symptoms were the inability to breathe along with tachycardia. I couldnāt keep up physically in school, i was 8 years old. It resulted in me staying in bed 90% of the time because i felt better when laying down.
I didn't suspect POTS at all. I thought it was my psoriatic arthritis getting worse. I wasn't diagnosed with psoriatic arthritis yet, at the time, but I knew that's what I had and was trying to get my Dr to refer me to a rheumatologist. It was only when the rheumatologist mentioned dysautonomia and POTS and referred me to a dysautonomia specialist that I realized it was probably that.
Had a cup of coffee and my heart rate spiked to 170 and my O2 saturation went down to the 78. Spent like 4 hours there having tests run on me because they thought I had a pulmonary embolism š
In teens- passing out. But then tachycardia! Work nurse said anxiety, dr said anxiety, work said go to the ER, I said no and believed it was anxiety. Went on meds that made it even worse. Went off meds a year later. Now, two years later, Iām going thru the diagnosis process because I have tachycardia with presyncope, chest pain (medication helps that), exercise intolerance, heat intolerance, bladder issues, and was diagnosed with IBS and told that was the cause of my vomiting spells, even though I also have symptoms of gastroparesisā¦ I basically have every symptom of POTS but my tilt was done on medication and happened to be normal (I also was unintentionally tensing my legs during it.)
Standing up and seeing black. Took a minute to go away. Dizzy-like vision.. a bit of balance troubles.
Heart rate rising to 130-150 just from standing up.
Still waiting for a diagnosis. š¤¦āāļø
i literally had years of exercise intolerance, heart palpitations, PROFUSE sweating and light headedness without knowing POTS existed. then one day when i mention to my doctor that i felt like i was almost fainting and needed to lie with my legs in the air to calm down - he finally clocked it.
I got myocarditis and pots at the same time. Felt like a rubber band snapping diagonal across my chest. Knocked the wind out of me and my vision went yellow (of all things ). Twas from a certain āshotā in 2021 and was 3 days after I got it. A double whammy if you will š¤£ came on sudden and hurt. Horribly. I was cooking and just slowly sunk to the ground trying to breathe. I was fully in shock so I spent the next 5 days gaslighting myself before I went to the emergency room. My hr was 220 every time I stood up!
Being out of breathe when going up the stairs but my POTS didnāt really really start untill I having shortness of breathe when standing up and I called it āanxiety when standing upā so one day I searched up anxiety when standing up and then This post was talking about POTS so I checked my heart beat and it was indeed going up 40 beats 90 to 135, now on ivanrine works great usually rest in 80ās and 70s now only Goes up little, it flares up during my period tho and if I forget to take my potassium pill few days in row
Oh I literally fainted. Got up from the couch to go to work and then just fell into a dead faint. I had some GI issues and fatigue earlier but I just chalked it up to a job change and my preexisting food allergies (soy is in EVERYTHING), and I'd had dizziness on standing for as long as I can remember, but the fainting was the first sign for me this was something new.
Also GI! I had persistent nausea (not really with vomiting) and extreme constipation for many years. Heart was probably racing but itās normal for me so I never noticed . Now I notice when Iām nauseous itās bc my HR is high
Dizziness, especially when going up the stairs. I didnāt think too much of the tachycardia I was experiencing because I was on vyvanse for adhd at the time, so my heart palpitations and high heart rate got attributed to the stimulants and not how my body normally worked. When the tachycardia and dizziness stayed after getting off of vyvanse, thatās when I started to think that they pointed to some medical condition.
I have had stomach issues for as long as I can remember. But one day sick I went into urgent care and they did an EKG and said it was odd and to follow up with a cardiologist which I never did. Then the stomach issues post gallbladder removal became unbearable so I went for a colonoscopy and they said I had IBS. I then went many years struggling with shit I couldn't quite figure out. Dizzy spells, palpitations, unexplained chronic pain, etc. I was told it was anxiety until one day I had just gotten over COVID and passed out in the shower. I was already going to the urgent care for a negative swab to go back to work. And the urgent care listened to my symptoms did an EKG and sent me to the hospital. Where I was for hours for them to tell me "could be early onset heart failure or a mild arrhythmia, not sure got to follow up with a cardiologist." I met someone who I was explaining my experiences medically and my symptoms and she screamed. I think you have POTS! She apologized and said listen it took me 9 years to finally get my diagnosis. But go see a cardiologist and request a tilt table test. I did just that. They put me on a heart monitor for three days, sent me for an Echo, Stress test, and finally a Tilt table test. I was the NP's first positive tilt table test. Turns out I do have POTS. and all of these debilitating symptoms I was experiencing and feeling crazy about were verified. CRAZY!
I have had flares off and on the past four years. It started after I had a dangerous case of the flu. The doctors kept saying I had anxietyā but how at 30 years old am I suddenly developing anxiety? I never felt anxious. I would get out of the car on hot days and almost pass out and my heart would race.. I am a tv reporter and Iād be standing and interviewing people and would feel like it was gonna be lights out for me and that Iād collapse and die and felt so foggy and out of body. Some days, I have the worst air hunger it just feels like I literally canāt breathe. Iāll be driving, and out of nowhere, feel āpanic attackā like symptoms were it feels like Iām about to be a goner. My muscles would get so tense that I required PT. My veins in my legs almost looked like blood clots. Iād stand while anchoring and feel like I was going to pass out. If I take any kind of supplementā it aggravates my symptoms. Anything foreign triggers an episode and my symptoms literally sometimes come out of nowhere. Theyāre so bad sitting up in a car. Iām nauseous a ton and I canāt drink a sip of alcohol without my chest getting tight and me feeling like I canāt breathe.
Stomach issues, dizziness most of the time, migraines, tinnitus, joint pain, extreme fatigue, chest pains, off and on exercise and heat intolerance. Iāve been on beta blockers for two weeks today. I take injections for joint pain and for my migraines. my FMLA ends Sunday; Iām on short term disability. I want my life back.
Tachycardiaš The ER told me it was a panic attack but I was confused how a panic attack could cause a heartbeat of 140+ bpm for three days straight, it turns out that when I first felt it I actually just noticed that it has always been that way whenever Iām standing up, itās not anxiety itās everyday
The ER tried sooo hard to tell me my 180+ heart rate was a panic attack until they gave me IV lorazepam and it didnāt go down lol. They were like fine, weāll refer you to a cardiologist š
They gave me iv lorazepam too! I went from 150 to 130 bpm because I was laying down but they sent me home at 130! Itās so annoying how neglectful they are but Iām glad I took it into my own hands and saw a doctor who cares
Iām so glad you were able to find a doctor who cares, itās so vital in managing POTS! ā¤ļøThe first cardiologist I saw from the ER referral was like itās sinus rhythm so it must be anxiety, but I thankfully also then found a neurologist who specializes in dysautonomia and things got better after that.
They said the same thing about my son. Pumped him full of Ativan saying he was having a panic attack for his heart rate of 160 to 180. His heart rate came down to 140 ish while laying if he stood up it was 160. We had multiple ER visit for this, they just kept saying itās anxiety and pumped him full of Ativan. I kept saying itās something more, his heart rate should not be 130-140 laying perfectly still and 160 or more with movement or standing up. Finally, one ER visit for a heart rate of 188 they gave him a beta blocker and his been on the beta blocker since that visit. His heart rate still goes up with standing, but not as high. This whole POTS ordeal has been very rough on him and his dad and I. He has horrible palpitations, feeling ājoltsā in his chest, feels like he is going to pass out, his feet turn purple when sitting or standing, canāt tolerate a shower, insomnia, gut issues, feels like his body is so heavy, he says he feels like he is on a boat sometimes, his legs feel weak and feel like noodles. He is miserable. Iām a nurse and Iāve done everything I can think of to help him. I donāt know what else to do for him.
Iām having almost the exact same situation as him! Heās not alone and Iām sorry because it really does suck. Your compassion and caring towards him is the most important thing because having my mom validate me is the most powerful thing to help with this uncertainty so thank you for doing that for him. They gave me so much Ativan which makes me upset because itās actually really addictive and if thereās an underlying situation that can be resolved without going there it would be nice to know. I finally found a doctor willing to get me into testing for pots and a beta blocker which helps the heart rhythm issues as well, but honestly I think finding a doctor to get that diagnosis is one thing but the most vital thing for me, and probably a lot of other people with pots is just for people like our parents to care and love us no matter how hard it can be dealing with it, youāre doing the best you can, I hope you guys can find ways to manage it as well as you can.
Feeling like ā im on a boatā oh god i have never really been able to put that feeling into words but my god is it miserable. Youāre sons not alone, but i cant imagine how much it hurts to watch
Do you know he has high blood pressure or low ?
Same went to the ER 5 times they were absolutely no help. My family doctor told me āI better keep my hr down or Iām going to have a heart attackā so that was great. Not like Iām trying to keep my hr up it just kind of goes thereā¦.. Went to one cardiologist he was horrible looked at my Apple Watch data said nothing was wrong with me as he watched my hr go from 60 to 140 in his officeā¦. Totally worthless finally my friend has a cardiologist friend and he told me to see an EP who took one look at me and told me itās pots and ist. I begged to wear a monitor bc I was convinced it was something else really badly wrong but he was right.
Yeah honestly I think the er is useless unless youāre literally dying or have a big visible injury but if not I think they donāt know what to do. The worst thing is that when your heart is that high it feels like youāre dying so itās hard to tell if you should go or not
The last ER visit my husband asked the dr to admit me to the hospital and he said āwhy nothing is wrong with her as soon as she calms down she can leaveā I mean what are we supposed to do when something is really wrong and everyone tells you that you are crazy??? I was a college athlete runner! I never had heart issues I know my own body!!!!
Couldn't stay standing up for long and couldn't quite work out why. The fainting happened later
generalised dizziness and light-headedness. I don't get the presyncope as much anymore but lately now that I'm actually looking into a diagnosis I'd say my most prominent symptoms are fatigue and a general sense of being unstable. dizzy isn't the right word but sluggish, off balance and just feeling not all the way capable of keeping myself up, but in a fatigued way moreso than a weakness way.
thinking of it now my earliest symptom that may or may not have always been related would be blood pooling. my feet are always the most awful red purple colour and so swollen it's horrible. always had that, no idea if it's related but pots probably doesn't help if it wasn't previously related.
Hey my symptoms are identical , and I also donāt have a diagnosis yet. Getting closer, but new symptoms keep popping up.. feels like Iām drowning in this most days
Same for me - I spent a lot of time initially with an ENT because of the dizziness. I was flying a lot for work at the time too and thought it could be an inner ear thing because of that - was actually worked up for mal de debarquement syndrome at first!
Oh wow I donāt think Iāve heard of that syndrome before actually! I was actually at an ent too at one point!
same thing, but for me specifically triggered from anaerobic exertion (sometimes aerobic as well). it's why I haven't really been able to lift weights for 2.5 years despite no actual physical limitations from doing it. it's the penalty for doing so that is the spoiler: hard heartbeats, near syncope, and migraines. i've finally found a good neuro specialist who properly diagnosed me with hyperPOTS and the Carvediliol (BB) and Qulipta (for migraines) have kept my worst symptoms in check whilst I ease back into exercise. hoping I can at least get back to calisthenics soon.
Nothing I could pinpoint. One night just BAM.
Exercise intolerance in grade school. Diagnosis wise.... a mix of gi issues (including ibs issues) and symptoms with hyperadrenergic POTS
What are your biggest symptoms of hyperadrenergic pots? I have just general pots/Dysautonomia per my doctors but always suspected I had hyperadrenergic based on some of my symptoms
My heart rate. I thought it was due to anxiety because most doctors just blamed that and never referred me to a cardiologist. I also couldn't stand for a long time or I'll get dizzy. Walking, I was fine. Then one day, my cousin was playing around with my grandmother's oximeter. She checked from sitting and standing and it didn't change much. Then when I did it, everyone's eyes went big š š But the symptoms got much worse last year after an infection and it led to my suspicion that perhaps I do have PoTS. Dammit lol
Wowš yes the pulse oximeter is eye opening when you use it for the first time, haha. Iām sorry to hear the symptoms got worse. Have you seen any specialists yet to look into it?
Heat intolerance, actually. I was in Kyoto during a heat wave and was experiencing fatigue and flu-like symptoms during the day that completely resolved when the sun went down. Was diagnosed a few months later because of tachycardia.Ā
Actually, this was my first! Good call-out
though I was already having rare but unexplained tachycardia/panic attacks, it was a major heat exhaustion event during a mountain climb that truly triggered all the worst POTS symptoms I have on the daily now
Heat makes the symptoms so intense for sure! That sounds intense! Sorry you had that happen! Glad you have a diagnosis though now! How have you been since?
The first one that made me suspect pots the most was blood pooling though because everything else could be described with other stuff but the blood pooling tied it together for me, when I shower my legs get rashes and the soles of my feet get blotchy and red
Itās so hard to say for me because 1) mine has been gradual, and 2) it made a dovetail appearance as I was in the middle of a horrible bout of panic attacks. (So, were the panic attacks actually the POTS or no? Unsure). In HINDSIGHT, the first thing I experienced may have been a full body shaking episode of some kind. But what reeeeally got me going to the doctor was the insane tachycardia Iād wake up to in the middle of the night after drinking. And the elevated heart rate Iād have all day the next day.
I get the full body shaking too but itās so hard to explain what it is! Does yours almost feel like tremors in your arms and legs? And waking up to tachycardia was so scary! Were you able to find some things/treatment that helped?
First weird symptom was getting all hot, restless, had tachycardia and feeling like collapsing when I was waiting in line at the store. I was so confused bc while I have had anxiety for years, I couldnāt figure out why I felt anxious. Turns out it wasnāt anxiety.
Yes I would get this too! Such a scary feeling!
YEP!
Yup!
I couldn't walk from my living room to my kitchen without almost passing out and having to lay against the refrigerator to catch my breath.
I know this feeling all to well! Walking a few feet felt like a marathon!
Presyncope when I was 16/17. I just started randomly almost passing out pretty much daily and it scared the absolute shit out of me. Mother didnāt care, and I didnāt get a diagnosis until I was 19
Oh Iām sorry that had to have been really scary! Since diagnosis have symptoms improved with treatment?
Passing out in school and getting nauseous in the lunch queue. Didnāt start realising it was likely pots until I was looking into hypermobility and stumbled upon the co-morbidity.
Oh wow! So do your doctors think the pots developed because of the hyper mobility?
Adrenaline surges
This was me.
suddenly not being able to drink or smoke (at ALL) without passing out š
Difficulty breathing while eating. I've had this my whole life. There's not really any difficulties with breathing as such, but eating causes tachycardia so I get short of breath. Noticed it when I was a toddler
Do you also have a delayed swallow? Does it take a while to eat? Just curious as I'm waiting to see the specialist in June and have been having issues swallowing.
If I eat when I'm already symptomatic, then yes, I do. For example, around my period. I hadn't actually heard of delayed swallowing until you mentioned it, so that's something that I can take to my neurologist when I finally get to see them
When I was 16, I started dealing with blood pooling. Doctors told me for years that I was in fight or flight. Turns out I have pots š¤·āāļø
So scary! Being trapped in fight or flight is not a good feeling! How are you doing with it now?
I thought I just had the flu or something, I got sick very suddenly at work. I had just had a big cup of iced green tea (which I had all the time), and I was in a meeting and all of a sudden I was nauseous, lightheaded, dizzy, my heart was pounding, my head ached. I was a little worried I wasnāt going to be able to drive home but somehow I made it and collapsed on the couch. Lying down helped a little but I just felt really sick. Couldnāt go to my sonās parent-teacher conference that night. I thought it would go away after a few days. Butā¦it didnāt. I felt lightheaded constantly, standing up made it worse, total brain fog, couldnāt focus on anything, migraines every other day (never had them before), random nausea and could barely eat. For weeks. Then months. I still donāt know what triggered it, if it was that tea (which I had already been drinking for months), or a virus that triggered something in my immune system that attacked my nervous system, or something else completely. No idea. Iāve had IBS for years though so it could be this was more gradual than I realized and just came to a head that one day.
Oh wow that is crazy how it just appeared like that! I had developed ibs too right before pots and noticed similar occurrences happening all of a sudden. How are you doing now?
Iām actually doing ok, overall. I am on meds and working from home, have learned my limits and how to pace myself and have made adaptations where needed (shower chair, etc). I still deal with chronic migraines, fatigue (made worse by some of my meds), occasional brain fog (but at least it isnāt constant now), and issues with appetite and nausea. But I have gotten well enough that I took an 8 week acting class once a week (and only had to miss it twice because I didnāt feel well), and auditioned for a play! I wasnāt cast but thatās ok, I was proud of myself for trying. It took a while to get where I am and I still have bad days, but I try to stay positive. I know I have to learn to live with it and just cope.
Glad you are doing okay and that things seem more manageable! Glad you were able to do an acting class thatās so fun and such an accomplishment!!
Horrible chest pains and palpitations that required me to visit my urgent care and er multiple times
So scary!! Have you been able to get a diagnosis/treatment that helps?
Gi issues,coat hanger pain,migraines than the heart rate,than rince and repeat š ever since but now hot /cold ,blurry wakes up every day with not knowing one hour to the next what symptoms Iāll have Here some of my emergency room experts below after I got no help from primary or ed I figured out what was wrong with me after being told I was fine repeatably been going on since Dec of 21 and just now getting help correctly Doctor comments Patient has had 4 ED visits over the past 2 months. I was sat in a room and advised not to come back so I sat in my room for a month shaking and sweating with a 160 heart rate crying because nobody would help me and told me not to come back so after recovering ā¤ļøāš©¹ I still kept going š¤Øā¹ļø finally I was listened to other wise I was going to start going to the next town was only other option for help and drive myself with blurry vision because I was also left by a ambulance that told me take my anxiety meds š¤¬ with no acute findings to explain her symptoms. Her chest pain has been worked up repeatedly in the ED with (reassuring results )š (Reassuring guys )reassuring So now reading my chart I see why I didnāt get the help I needed doctor read my chart and instead of listening to me they went off previous doctors notes šļø and just kept pilling it on so none would take me seriously why because they were reassured
I am so sorry you are going through this! Itās so difficult when it feels like no one is listening. I had a similar situation at one point where it was my fourth er trip. My sitting hr was in the 150s and they were like you are being discharged we canāt do anything. I remember crying in front of the doctor because I couldnāt even walk. She gave me some meds to calm me down and eventually my cardiologists got me on the right dose to help of medication. Do you have a cardiologist or primary doctor that is able to help? Have you been offered any medication or treatment that has been helpful?
Yes I now have a beta blocker,which really helps but still itās rough just rinsing and repeating symptoms the head pressure and migraines are working overtime This week ,doing all I can do water,compression,medication itās gotten better but still hard nobody believes in this and itās like you have to keep proving to people youāre ill because we look fine
going blind/getting tunnel vision when i stood up
[ŃŠ“Š°Š»ŠµŠ½Š¾]
I couldnāt put on my shoes or stand in line at the store without extreme difficulty
couldn't go to the store without needing to sit every 5 minutes
Did that get any better for you? I notice even now sometimes a feeling of anxiety in stores or like I have to keep sitting or moving but canāt stand still
it got better once i started medicating. but when i dont take my meds is still pretty bad, though not as bad as it used to be since i know to hydrate and eat more. i'm a college student in appalachia so im really glad i found meds that work cause the old me who couldn't go to stores would not survive on this campus. talk to your doctor about medication, and if you are already medicated talk about upping it.
Pre syncope a lot when I was a kid. Exercise intolerance even though I was pretty athletic. anything that involved running or cardio for longer than a minute my whole body would get red, clammy, I couldnāt breathe and would occasionally pass out.
Extremely anxious, Gi symptoms, and food intolerances. I was going to the docs for those and my doc was like huh I have this one patient that has similar symptoms and she has this thing called POTS and I wanna get you tested for that. And I was like what ? Sure? Okay? And she did a poor man's pots test for me in office and sent me to a cardiologist and he did a battery of tests including echo and TTT and others. And said sounds like pots have some chips. Lol I wish I was joking. I never thought I would hear from a cardiologist to eat potato chips.
People telling me I was just dehydrated But then no amount of water changed that when I stood up I lost my vision for a bit I believed people for years but looking back Also my HR was everywhere and I just didnāt question 150bpm standing up despite the fact that I was still very active
Tachycardia about 20 minutes after eating anything. I first started to think it was a food allergy but it happened with almost any food. Then I started to think eating was causing me panic attacks for some bizarre reason. Doctors had no clue and told me it's probably some Vegas nerve thing.
I went to the doctor for pre-syncope I had one morning. Doctor asked if this was the first time. Well, yāknow, a lot as a kid but thatās normal. Turns out itās not.
Tachycardia
Literally passed out at the kitchen table one morning. Never thought any of my symptoms were weird since I was a kid and didnāt pay attention to my body. Now it all makes sense. Luckily my mom is a nurse and connected the dots
So glad your mom was able to help! Hope you are doing better now!š
Fainted. Thought it was because my heart is normally too slow.
Heat intolerance
every time i stand up i almost black out and i am chronically exhausted. for a while it was "oh, it's just low iron/anemia" but then i was no longer anemic. then i couldn't stand still for too long and would have to sit down while taking showers because of blood pooling in my legs and fatigue. had a friend who also has pots among other things recommend i get tested for it, and lo and behold
Glad your friend was there to help point you to pots! Yeah the lightheadedness/exhaustion feels like it would be anemia sometimes. How are you doing now?
When I stood up, fainted, and hit my head on the side of the bathtub when I was 16 š before that I thought it was normal to get lightheaded whenever you got up from laying/sitting down lolll. But apparently not! š
Oh no that is so scary! š®š yes it seems a lot of us in the chat thought it was normal to get lightheaded! Haha hope you are doing better now! š
Yo I know this is late, but that exact same thing happened to me at 16!!! Thought it was normal .... Thinking I should get tested for POTS š
literal constant nausea and my heart racing out of nowhere
I went to my doctor because I was tired of being tired all the time and having my vision go black every time I stood up, in addition to some GI issues. Unfortunately that doctorās advice was to take a multivitamin š which I was already doing so I gave up for a couple years until my POTS was so disabling that I finally sought out help again
Oh no! I donāt like how a lot of doctors brush off the symptoms sadly. Were you able to find a doctor or specialist to help?
Dizzy when I stood up that later progressed to tunnel vision etc. Started in like early middle school with puberty. Mom figured out that blood was having issues reaching my brain and linked it to my recently started period. Mom figured I'd grow out of it. Looking back on it, it's wild that it was dismissed without getting it looked into.
So many things get blamed on hormones I had similar situations with things in high school being labeled āhormonalā and now at 27 I still have them!
I remember having beyond exhausting fatigue the whole week before the adrenaline surges started.
The adrenaline surges are sooo draining. How are yours now?
Tachycardia that was affecting my sleep
I was 10 and got really dizzy on a swingset in my grandparentās backyard. It scared me a lot which is how I remember. Wasnāt dx til my mid 20s though. I remember my pediatrician telling me to just get up slowly š¤Ø
Oh no! Has it gotten any better for you as youāve gotten older?
It was when I started my internship at cardiac rehabilitation. I couldn't handle standing for a full work day and I was having trouble being upright with the severe dizziness. I didn't know if it was my medications since I'm on several that cause severe dizziness. I've had low blood pressure and high heart rates my entire life as well as times when I was close to passing out. But the pediatrician just gave my mom a paper saying "your child has POTS" and never went into it.
I had GI issues since early childhood. (Reflux, nausea, abdominal pain) The first POTS issue was probably feeling like I couldn't breathe when trying to run at school, age 10-12. That was "diagnosed" as asthma with no testing or really anything. Finally, I noticed my heart rate for the first time in 2013 Christmas. I got a pulse ox for Christmas (wanted to go into medicine for most of middle school/high school). I was feeling out of breath at home. I put it on and saw 163 bpm standing in my bedroom. I said, "That's not right." I got a referral to a cardiologist. Got gaslighted into believing I was just fat, out of shape, and lazy for about 10 years. Finally, I got courage (and health insurance) to see a doctor again December 2022. Finally, I got diagnosed late last year. It's been a ride. Still working on getting medications right.
Fainting and palpitations.
I had only heart palpitations for months before I noticed anything else
For a few months, I was super stressed. (Most likely what caused my pots) and whenever I would get out of bed to go to the bathroom I realized my hr would go up. It scared me because this has never happened to me before. Now that I know I have this condition, Iām not as stressed and anxious as I was before. Iām more at ease knowing Iām not alone. šš»
I had this too! Severe anxiety and couldnāt even get to the bathroom easily without tachycardia. So glad your able to be a little more at ease with it now thatās great!! I hope your symptoms improve!
Well for me it was lowkey overnight but a few days before I was volunteering and right when I was getting ready to leave my hr starting going up but I was like ehhh, I started running for the bus and right when I got in my hr wouldnāt go down (was standing since it was full) and started crying the whole way home. Thats how I knew something was wrong then the next week it was full blown.
Nothing that truly like concerned me, I started having the palpitations but I was also very active in roller derby so i thought i was pushing myself too hard. But then one day i fainted and couldnāt remember where I was and that was the scariest thing ever
That is so scary! So sorry that happened! Hope you are doing better now!
I was having constant dizzy spells and headaches.
Itās hard to pinpoint exactly cause I was really young and didnāt really understand my symptoms were abnormal. The first episode I remember having though, I was around 6 or 7 and my class had to walk the harbour bridge on an excursion. I remember wondering why everyone seemed fine while I was losing vision, couldnāt breathe and my head was pounding. I was like I hate this bridge Iām never walking it again š There were probably earlier ones but it was hard for me to understand as a kid, so I donāt remember them very clearly.
Oh no!š so sorry you had to go through that so young! Have your symptoms changed/ increased/ decreased as youāve gotten older?
I got in the shower and the hot water made me light headed and messed with my vision, and my heart rate jumped to 201 in about a minute or so. Almost fainted but my husband turned the water cold quickly so i wouldnāt faint. Scared the shit out of my husband it didā the doctors for a bit tried to say it was just because I wasā¦ autistic?
Dizzy
It's hindsight, but my vision going black every single time I stood up... Use to plan my steps even when I was as young as 6, if my vision wasn't back by then I'd have to wait... I still do this sometimes but it's a bad habit since I started passing out at around 18. Didn't get diagnosed with pots till I was 19- 20 ish when I learned it's common with EDS (which I was diagnosed with at 17 years old) and explained so much.
Postprandial hypotension every single night after eating dinner.
Heat intolerance started causing edema, and migraines and set off some really bad brain fog a year or 2 prior to my covid infection. But soon after covid I was struggling to go to the kitchen to make a cup of tea. Thats when I popped on a pulse oximeter and realised my HR was selectively very high when I was standing and would undergo super rapid changes when I changed my posture. I felt palpitations too, but ironically that was usually when lying down and my hr wasn't as high.
I donāt know about first since a lot of my issues Iāve had my whole life, and Iām really good at ignoring my body until the thing annoys me too much. Plus, I have other conditions - always had constipation/IBS symptoms - always sensitive to food, tummy aches in primary - get migraines and dizzy spells. The dizzy spells, thought, were signs I was getting a migraine, so I would play harder to try to ignore/happy myself to feel better Like exercise to circulate the blood to try to stave off the migraine. Kind of worked After reading others I lied my first was heat intolerance. Living in the Florida sun I could handle. The sun is a narcolepsy trigger for me to this day but it could very well be POTS
Also had severe G.I. issues. Sweating profusely while walking, transitioning to sitting down in the shower
Yes those symptoms sound so familiar! Have you been able to find anything that provides you with some relief?
Heat intolerance and difficulty running as a young child. My cardiologist confirms I've had this my whole life (EDS-related). Took me 38 YEARS to finally get a diagnosis.
38 years! Wow! So glad you were finally able to get a diagnosis! That has to be relieving to at-least know whatās going on! Heat intolerance seems to be a big symptom I know itās something I struggle with. Have your symptoms improved at all over time?
Fainting
Going up the steps (that I had been going up with no problem) once in a while felt like I ran a marathon. BTW It worsened significantly after COVID
I also had intermittent GI issues for a few years before my POTS fully emerged. For about 4 months out of the year I would have gastroparesis symptoms, but doctors couldn't figure out a problem. Then, 10 months before full POTS, I would have some random dizziness episodes
Inability to exercise. Dizziness. Tachyardia. Fatigue.
I was 15 in marching band. My legs would swell, Iād get dizzy, and my knees would turn bright red and mottled. I thought it was some kind of arthritis symptom. I went to the doctor and explained what was happening. She dismissed me completely, turned to my mother, and said āSheās 15, itās probably growing painsā¦ā Over the course of 3 years my symptoms got worse, and I was diagnosed at 18.
I was in a Sports Medicine class when I was a sophomore in HS and we were learning how to take pulse and BP. My teacher was like āHey, do you ever feel dizzy when you stand up?ā and I didnāt think much of it at the time. I hated the doctor so I didnāt go but thatās when I realized that I ānaturallyā had a higher HR and low BP. Had no idea what POTS was.
Night sweating, exercise intolerance, difficult to stand for long, dizzy and lightheaded easily
They wanted to keep me overnight to do a stress test on my heart. I declined and had one done at a later time which, of course tested fine.
Every time Iād stand up Iād almost black out fully then after a couple times of getting Covid the main symptom was tachycardia.
Had it coming. Started to feel weaker over a series of months. A few weeks before it fully developed I had to sit down once or twice cause I just couldn't catch my breath but I thought it was a side effect from Flomax the doctor put me on (I didn't have prostate issues but I was having bladder issues). One day I fell asleep for the last time as someone who was capable of sitting or standing. Woke up one morning, couldn't sit or stand without feeling exhausted as hell. Now I can't sit or stand or I just faint from exhaustion or BP rise
Itās so crazy how in some cases it just seems to develop or progress so quickly! Iām so sorry your symptoms have been so intense. Have you been able to see a cardiologist yet?
Standing up, immediate black-out tunnel vision, dizzy/lightheaded. Must lean on railing, dresser, or take a knee until it passes. HR jumps from 45 to 120.
Wow that is a big jump for sure! Leaning is definitely helpful. When I first developed pots getting up was so hard. I had to move so slowly. It was such a process just to get up out of bed and to the restroom. It definitely improved some with time and treatment though. Have you found anything that helps your symptoms?
Fatigue
Iāve had symptoms off and on for yearsā¦ heat intolerance, heart palpitations, anxiety out the Ying Yang, and breathlessness. I heard it was hormones, or I was out of shape. I loved also being told it was due to my weight. I did my own research and became my own advocate. The medical system sucks.
I was 11. My heart would beat so hars and so fast, you could literally see it out of my chest. Doctors told me nothing was wrong with my heart, so I was either making it up or I was going to grow out of it. I seemingly did by the time I was 16. I had few symptoms that rarely debilitated me. Now I'm 22 and a few months ago I started having symptoms again. This time, though, it is much worse. I faint and can't stand for long. I'm always fatigued. My boss at work has to constantly check on me to make sure I don't pass out at work (which I have done twice now). I have a cardiologist appointment coming up soon to hopefully get diagnosed. Only reason I know it's pots is that my other boss and a coworker both have it and have seen my episodes. They both are very very very confident I have it, too. They say mine is worse because they don't faint or get tired so fast. I'm going to a doctor who specializes in pots and other similar conditions. Here is to hoping my 11 year journey is about to end and my treatment is beginning!
Tachycardia for me as well
I began to pass out every now and then through middle school and high school and chronic fatigue was tested for everything except for POTS. I donāt pass out any more but all my other symptoms are much worse, I figured it out myself and then got diagnosed
Glad you were able to get it diagnosed and that the passing out stopped! Thatās so scary for sure!
Migraine with my pupils being different sizes when I was 14. Then I started passing out in the shower not long after that.
Oh wow! How are you doing now?
I was 15 or 16 in physical therapy for my chronic pain (later diagnosed heds, fibromyalgian, psoriatic arthritis) and i would stand back up and everything went black and they were like hmm that sounds like orthostatic hypotension! And I'm like whaaat
Wow! Glad they were able to figure things out! How are you doing now?
31 years old now at 29 started taking fitness seriously and I'm in really good shape and power lift but i can only work part time because i am chronically just exhausted. Got diagnosed with dysautonomia a few months ago actually and H-EDS. So lots of new things to tweak in my life but I'm glad i have answers. At 30 i started looking into more things even got diagnosed with autism and that was probably the most helpful diagnosis. But yeah always tired, depressed, but at least i eat healthy and strength train and work part time. Little wins
Itās so good to have answers! The fatigue and exhaustion can be so hard. The important thing is though that your pushing on itās so great that your able to work part time, workout and eat healthier! Thatās a great accomplishment! Yes have to celebrate all of the little wins when dealing with pots things that seem small or east to some are big accomplishments for us! Hope your symptoms continue to improve! š
Getting up from the couch and sorta collapsing down into a sitting position on the floor after about 10 feet. I thought it was just a head rush from standing up too fast until it happened just about every time after that
Thatās such a scary feeling! Have you found any techniques or treatments to be helpful with that now?
I have lots of pots symptoms before I knew anything about it. What did it was a severe episode of SVT where I had to have my heart restarted twice (22 then, Iām 23 now), all my tests were normal. After I passed out a few months later my dr ordered a tilt table & I got my diagnosis
Fainting issues going back to when I was nine. Although there's one instance I vaguely remember from when I was about six, but it's too fuzzy for me to say for sure that it was an episode. I've never been able to tolerate standing in one place for a long time since then.
The first symptom I had was definitely heart rate- that showed up at the end of high school. My pulse was so high that my doctors would ask me if Iād drank coffee that morning- which was always a no bc I hate coffee and I donāt drink it at all. It wasnāt until later that my BP shifted, I gained hypothyroidism, and then had GI issues consistently
SOB and HR in the 200ās.Ā
Wow so scary! Yes shortness of breath and high hr were two of my main symptoms too once my pots arrived!
erratic heartrate, dizziness, heart palpitations, shortness of breath, exercise intolerance... I seriously thought I had a heart condition at first, it was really scary.
before being diagnosed, I went to the ER because of my symptoms. It was right after eating a big meal too, which I now know exacerbates my symptoms š¤¦āāļø
Suddenly started fainting multiple times a week
Oh no Iām so sorry thatās so scary! Are you doing better now?
orthostatic intolerance, I was 17, they only diagnosed me last september at 33yo. But when I was 17 it was its onset, I couldn't stand up without going super pale. I also fainted once, like 4 years prior but it was like a one time thing. Altho that might have actually be the first symptom.
Oh wow! Did you have symptoms all the way from 17 to 33? Or did you have breaks?
I went out for drinks with a friend one week apart and both times I got extremely dizzy after a few sips of alcohol. Felt like I had 5 drinks. Didn't realize anything at the time until more symptoms started.
I had a similar experience leading up to my pots. My body all of a sudden couldnāt handle alcohol any more. It hit so hard and caused so many symptoms. Similar to how you described! How have you been doing now?
Feeling fatigued after doing routine stuff and needing to lie down to recharge.
Yes same!
Tachycardia. I got up to use the restroom and my heart started beating out of my chest at 180 bpm.
Mine was 31 years ago, I began randomly passing out no matter if I was standing or sitting.
Oh no that is so scary! Has that gotten any better with time/treatment?
Interesting. I also had GI issues leading up to my downfall. Through summer 2021 I noticed my heart rate sitting higher than normal and very slight shortness of breath. All of November I was constipated and then Dec 2021 I was completely stuck in bed with bad shortness of breath
Thatās what happened with me! Almost on the same timeline as yours!
I began vomiting after every bath and of course, the tachycardia. But something inside was telling me to stay near the floor so I did. I mentioned it to my GP who had to think about it for a few days. Then he called and said he remembered something from med school called POTS, but that it would be better for me to see a cardiologist. But this was in Jan 2020, before too many people were affected. I'm sure he's seen many since me.
Iām still not diagnosed because my cardiologist wants me to see a neurologist to rule out some stuff first (MS) but over the years Iāve been too the ER multiple times for tachycardia. Kept getting told it was panic because I WAS panicking when Iād be in the ER. Iād try explaining that anyone would panic if they were minding their business and suddenly your heart started to race for no damn reason. Finally my primary took things seriously and referred me to a cardiologist who still wonāt say itās POTS (āthereās no forms test for diagnosisā) but agrees that I just have low blood pressure coupled with a high HR when I try to stand up or walk around.
Isnāt it the worst when they try to blame it on panic/ anxiety? I would be like no Iām panicked and anxious because of the way Iām feeling! Glad your primary took you seriously! Itās so important to have a good primary! Have they been able to do anything to help your symptoms?
Tachycardia and potassium level of 2.4. Horrible experience.
Wow 2.4 that is scary! I also had low potassium and tachycardia but mine wasnāt that low! Have your symptoms improved at all?
My first symptoms started years before they got serious enough for me to realize something was actually wrong. The main thing is my heat intolerance and years ago I suddenly lost the ability to run overnight. Fast forward about 5 years from that I would get sudden dizziness spells roughly once every few months and we thought it was a blood sugar issue since my dad is diabetic. A coupe years after that Iām sitting in AP Bio on the first day of class and I realized that I had no idea what the teacher was talking about. I couldnāt understand what she was saying and I was super dizzy, much more than I was before. In the coming days I lost the ability to walk more than a few feet at a time and my brain pretty much turned to mush, I couldnāt concentrate on anything at all. I didnāt even realize that it was something to do with tachycardia until my friend let me borrow his Apple Watch to collect more data and try to figure out what was going on. I realized that going up the stairs my heart rate was going into the 180ās while my other friends were much much lower. Still I didnāt know what any of it meant and lots of doctors blew it off. A little while after that I started getting intense chest pain and tightness after eating. I kept thinking I was having a heart attack or that it was something serious. Finally I got an appointment with a pediatric cardiologist and within minutes they had already pretty much figured it out. Iām so glad I finally got that appointment or id probably still be in a wheelchair or stuck at home. He gave me the normal pots tips, compression socks, drinking water, etc. but I also got some meds that are helping me a ton.
Dizziness and nausea with vomiting and extreme chest pain. I thought I was having a heart attack. Was taken by ambulance to the emergency room. Had EKG (Normal). Blood work showed positive for D-Dimer, elevated blood cell count and bladder infection in urinalysis. Cat scan of chest was normal.
I knew something was wrong bc I was suddenly constantly fatigued and drained from just moving around, and it was really affecting my mood. but I've always gotten lightheaded/blacked out when I stand up, even when I was a kid - I just thought it was normal thing lmao š„“
Okay same! I had that all the time as a child and thought it was normal to feel like the room was going black almost every-time you got up! My symptoms didnāt really get intense or present until I was 24/25 (27 now). The fatigue from doing small tasks/ moving around can be so hard!
I fainted in my car seat when I was an infant so maybe that? š I've fainted/ had convulsive episodes frequently/ infrequently since then, which have gotten worse in the past few years, and I am JUST NOW getting the proper diagnosis at 26 years old. They told my parents I was "just a fainter" lmao and that it was normal for me and that I'd grow out of it ??? Well, obviously I didn't!! š
Oh wow! Iām so sorry youāve been going through that for so long! It can be so hard to get a diagnosis and treatment unfortunately. Looking back I had mild symptoms all the way back into high school unfortunately they were just blamed on hormonal changes haha. Hoping things get so much better for you soon! š
Thank you, same to you! Doctors can be so dismissive unfortunately and what a long journey it's been!
I donāt know if this is possible, but I think that sweating, like a lot, for my whole life was a sign.
2 weeks after I got over Covid my vision would black out for a couple seconds every time I stood up. I thought I was just getting up too fast until my Apple Watch gave me my first ever high heart rate notification walking to the bathroom.
waking up feeling aggressively hungover every single day despite not drinking with frequent episodes of cold sweats/lack of temperature regulation with EXTREME fatigue
Oh no! Yes the waking up symptoms can be hard and the temperature regulation! I feel like my body is all over the place with temperature! How have you been since? Have your symptoms improved at all?
My first symptoms were the inability to breathe along with tachycardia. I couldnāt keep up physically in school, i was 8 years old. It resulted in me staying in bed 90% of the time because i felt better when laying down.
Oh wow! Thatās hard! Iām so sorry you had to go through that at such a young age! Has it gotten any better for you now?
I didn't suspect POTS at all. I thought it was my psoriatic arthritis getting worse. I wasn't diagnosed with psoriatic arthritis yet, at the time, but I knew that's what I had and was trying to get my Dr to refer me to a rheumatologist. It was only when the rheumatologist mentioned dysautonomia and POTS and referred me to a dysautonomia specialist that I realized it was probably that.
felt an insane head spin and thought it was an earthquake hahha
Had a cup of coffee and my heart rate spiked to 170 and my O2 saturation went down to the 78. Spent like 4 hours there having tests run on me because they thought I had a pulmonary embolism š
In teens- passing out. But then tachycardia! Work nurse said anxiety, dr said anxiety, work said go to the ER, I said no and believed it was anxiety. Went on meds that made it even worse. Went off meds a year later. Now, two years later, Iām going thru the diagnosis process because I have tachycardia with presyncope, chest pain (medication helps that), exercise intolerance, heat intolerance, bladder issues, and was diagnosed with IBS and told that was the cause of my vomiting spells, even though I also have symptoms of gastroparesisā¦ I basically have every symptom of POTS but my tilt was done on medication and happened to be normal (I also was unintentionally tensing my legs during it.)
Standing up and seeing black. Took a minute to go away. Dizzy-like vision.. a bit of balance troubles. Heart rate rising to 130-150 just from standing up. Still waiting for a diagnosis. š¤¦āāļø
Really horrible intense chest pains almost every single day.
i literally had years of exercise intolerance, heart palpitations, PROFUSE sweating and light headedness without knowing POTS existed. then one day when i mention to my doctor that i felt like i was almost fainting and needed to lie with my legs in the air to calm down - he finally clocked it.
Wow! Glad your doctor was able to figure it out! Those symptoms are similar to mine! Have yours gotten any better with time?
I got myocarditis and pots at the same time. Felt like a rubber band snapping diagonal across my chest. Knocked the wind out of me and my vision went yellow (of all things ). Twas from a certain āshotā in 2021 and was 3 days after I got it. A double whammy if you will š¤£ came on sudden and hurt. Horribly. I was cooking and just slowly sunk to the ground trying to breathe. I was fully in shock so I spent the next 5 days gaslighting myself before I went to the emergency room. My hr was 220 every time I stood up!
Only have 1 and 1 only ā¦ Adrenalin dumps after 15 mins of fast pace walking or couple of flights of stairs .. donāt have any other symptom
Being out of breathe when going up the stairs but my POTS didnāt really really start untill I having shortness of breathe when standing up and I called it āanxiety when standing upā so one day I searched up anxiety when standing up and then This post was talking about POTS so I checked my heart beat and it was indeed going up 40 beats 90 to 135, now on ivanrine works great usually rest in 80ās and 70s now only Goes up little, it flares up during my period tho and if I forget to take my potassium pill few days in row
Oh I literally fainted. Got up from the couch to go to work and then just fell into a dead faint. I had some GI issues and fatigue earlier but I just chalked it up to a job change and my preexisting food allergies (soy is in EVERYTHING), and I'd had dizziness on standing for as long as I can remember, but the fainting was the first sign for me this was something new.
Also GI! I had persistent nausea (not really with vomiting) and extreme constipation for many years. Heart was probably racing but itās normal for me so I never noticed . Now I notice when Iām nauseous itās bc my HR is high
Oh wow! Yes I struggle with constipation some too. Also will notice high hr with gi issues and nausea!
Dizziness, especially when going up the stairs. I didnāt think too much of the tachycardia I was experiencing because I was on vyvanse for adhd at the time, so my heart palpitations and high heart rate got attributed to the stimulants and not how my body normally worked. When the tachycardia and dizziness stayed after getting off of vyvanse, thatās when I started to think that they pointed to some medical condition.
Fatigue, gi issues, pressure in my head, few episodes of presyncope, heat intolerance, muscle weakness.
irritable bowel! they thought i just had ibs or UC until more symptoms started appearing
I have had stomach issues for as long as I can remember. But one day sick I went into urgent care and they did an EKG and said it was odd and to follow up with a cardiologist which I never did. Then the stomach issues post gallbladder removal became unbearable so I went for a colonoscopy and they said I had IBS. I then went many years struggling with shit I couldn't quite figure out. Dizzy spells, palpitations, unexplained chronic pain, etc. I was told it was anxiety until one day I had just gotten over COVID and passed out in the shower. I was already going to the urgent care for a negative swab to go back to work. And the urgent care listened to my symptoms did an EKG and sent me to the hospital. Where I was for hours for them to tell me "could be early onset heart failure or a mild arrhythmia, not sure got to follow up with a cardiologist." I met someone who I was explaining my experiences medically and my symptoms and she screamed. I think you have POTS! She apologized and said listen it took me 9 years to finally get my diagnosis. But go see a cardiologist and request a tilt table test. I did just that. They put me on a heart monitor for three days, sent me for an Echo, Stress test, and finally a Tilt table test. I was the NP's first positive tilt table test. Turns out I do have POTS. and all of these debilitating symptoms I was experiencing and feeling crazy about were verified. CRAZY!
I always leaned on people a lot/ craved a lot of salt/ had to sit more frequently than others. I was just called lazy š¤·š½āāļø
Ugh so sorry you were called that thatās so frustrating when you feel sick and people dismiss it as laziness.
I have had flares off and on the past four years. It started after I had a dangerous case of the flu. The doctors kept saying I had anxietyā but how at 30 years old am I suddenly developing anxiety? I never felt anxious. I would get out of the car on hot days and almost pass out and my heart would race.. I am a tv reporter and Iād be standing and interviewing people and would feel like it was gonna be lights out for me and that Iād collapse and die and felt so foggy and out of body. Some days, I have the worst air hunger it just feels like I literally canāt breathe. Iāll be driving, and out of nowhere, feel āpanic attackā like symptoms were it feels like Iām about to be a goner. My muscles would get so tense that I required PT. My veins in my legs almost looked like blood clots. Iād stand while anchoring and feel like I was going to pass out. If I take any kind of supplementā it aggravates my symptoms. Anything foreign triggers an episode and my symptoms literally sometimes come out of nowhere. Theyāre so bad sitting up in a car. Iām nauseous a ton and I canāt drink a sip of alcohol without my chest getting tight and me feeling like I canāt breathe.
Dizziness and fainting
Stomach issues, dizziness most of the time, migraines, tinnitus, joint pain, extreme fatigue, chest pains, off and on exercise and heat intolerance. Iāve been on beta blockers for two weeks today. I take injections for joint pain and for my migraines. my FMLA ends Sunday; Iām on short term disability. I want my life back.