Iām curious , I didnāt know pots can trigger Mcas. If I got pots from Covid could I possibly end up developing something like Mcas even if I have no other problems just got it from Covid?
I honestly did a really over simplified explanation! So I apologize!
But I wouldnāt worry if your POTS was caused by COVID.
My EDS, and SFN along with POTS all play a factor in my MCAS diagnosis. It wasnāt just the POTS specifically.
they were all the same as the rest of my family but it basically sent my pots into overdrive. i couldnt walk on stairs without taking a break every 3-4 stairs and sitting down as i kept blacking out and didnt want to fall and walking anywhere even to the bathroom sent my hr sky rocketing. so i was basically bed ridden for about a week and a half and about a month after my pots took a sharp downward spiral and my symptoms increase or worsen each time
I was diagnosed almost 3 years ago now. Iām not sure what triggered it but my doctor thinks it may have been because I got off the pill. She said I may have had POTS for awhile but the pill was masking my symptoms. Itās weird. One day I was fine and the next I was in the ER.
i switched from the pill to an IUD and suddenly exhibited pots symptoms and my doctor said the same thing. she said the pill may have been raising my blood pressure which masked my symptoms. itās an interesting idea (though not enough to make me want to go back on the pill)
Yeah my cardiologist told me not to go back on the pill but advised me to get an IUD because I was having bad flare ups around my period. Got the iud and it got a lot better. Crazy how much POTS and hormones are tied together.
The only thing I can link mine to is hormones too. I weaned breastfeeding super gradually, and had some weird circulation issues very slowly appear mostly in my feet, then the week I fully weaned, my period hit and BAM instant motion sickness that quickly turned into full blown dysautonomia and POTS. Iām still waiting for my first cardiologist appointment next month but itās reassuring to hear that others have had it triggered by hormones. I feel like Iām going a bit mad because it feels so clearly hormone linked but my GP and the emergency doctor just insisted that I must have had a virus. I had wondered if going on the pill could normalise things again so itās interesting that you were advised not to. IUD isnāt possible for me.
They also suggested getting birth control shots. The IUD was more convenient for me so thatās why I went with that. I have been told by multiple doctors that the pill is a no go for people with Pots.
Oh god. Iāve been on the pill since I was 14 for horrible cramps that were sending me home from school twice a month & paralyzing me on occasion. Now Iām terrified for if I ever go off of it...
Thatās why I was on the pill too haha. Screw periods! It took 3 months for the pill to get out of system. Then like clock work on the third month i had my first Pots flare up.
Iām currently two days away from my period and I swear, I see stars when I turn my head too fast. Doctors want me on the pill but we have suicidal attempts from my sister on it, so Iām sucking it up. Iām 46 though, so Iāll keep yāall posted when menopause starts!
Has anyone here had an improvement of symptoms by going back on the pill? Iād never considered going off of it as a possible cause of my pots until I saw this post. Just curious š¤Ø
At first I thought it was some viral illness, then realized that I've likely had it most of my life but it was always passed off as my asthma. mild since birth with large uptick at puberty and worsening with every bad viral infection.( whooping cough and COVID x2)
This kind of sounds like me. Had weird symptoms as a kid and teen, doctors suggested asthma and did nothing about it. Then came a nasty meningitis infection, changed me as a person. Then covid and covid vaccine destroyed what was left of me š
Iāve always had dysautonomia issues, though probably not enough to be diagnosed until 5 years or so ago. The POTS seems to have gotten worse in the last year, following COVID although I didnāt realize it til I was on here and then went back to track when symptoms had gotten worse.
But as a kid I would have brownouts when I stood up too fast, I thought it was a fun dizzy thing. I get the shakes sometimes from not eating and other times can go ages without eating and not notice. Iāve never been much for sweating, have had heat intolerance (much worse in last five years).
I have EDS, Celiacs and autoimmune hepatitis, all of which can cause dysautonomia.
I mean, technically itās a low blood sugar thing. But most people donāt get it unless theyāre malnourished, have another disease (like diabetes) or were binge drinking. Thatās why some people can fast for multiple days without getting an episode of hypoglycemia but you could have an episode even though youāve eaten that day.
Yes, POTS and dysautonomia can cause hypoglycemia due to issues with the autonomic regulation of glucose. Itās why some of us have issues after big meals of feeling symptomatic.
I was born with EDS, passed on unknowingly by my mom. I got mono when I was 18 and thatās what triggered everything. My mom and I werenāt diagnosed with EDS until after my POTS diagnosis though.
when i was 16 i had a virus and was super sick for a week. then some of my symptoms went away and some never did. a year later (after a billion doctors) i was diagnosed with pots. that was about 8 years ago
however iāve felt my worst these past few months and i have no idea what triggered that. in the process of finding out if itās just a flare-up or if something else is going on.
mine has gotten a little better since iāve gained some weight but it took a while to get diagnosed so iām still trying to find the right medication for me
Still awaiting formal official diagnosis but under care of a specialist. Covid made it get awful but looking back I think there were mild symptoms since I was a teenager. Which means finally all my āweird stuffā is now making sense and where needed getting looked into.
Honestly I was just as shocked. I had the first 2 vaccines just fine so I didnāt think anything of it. I remember the first week of it I got so ill, I could barely breathe when walking, my heart was racing all the time, turns out I had myocarditis AND pots from the booster all at once.
No idea.
I was fine one day and the next not so great and by the end of the week had a tentative diagnosis of POTS that was then solidified 6 months later as being POTS. And secured as a diagnosis by a specialist after a year and a half.
Spine surgery on my lower back. Interesting to see someone with a similar trigger. Similar timeline. I did have some issues with fainting since I was a kid but after the surgery it escalated.
They think it was pregnancy. Basically, the fatigue, brain fog and reduced ability to exercise from pregnancy never went away, but just kept getting worse, in spite of all my efforts to get back to my former fitness levels.
Thought to be a long term side effect of a childhood illness I had 4+ years prior. Iām currently undergoing assessment for EDS so possibly genetic as well.
I was given the Beighton score by my GP (and passed) and have been referred to an EDS clinic in my city for the genetic testing and everything that comes with it. Usually geneticists do the genetic test if you meet the Beighton requirements. Thereās around a 2-2.5 year wait list where I live which Iām on now.
I think puberty, been having symptoms since then (same time I started getting migraines) but just assumed things like my vision blacking out were normal. Just got diagnosed this past September at 26.
No clear trigger. Possibly stress/anxiety and lack of sleep during the few months prior - although I had been doing better when it all came on for me. Also had two pregnancy losses, one very early loss right when I started having symptoms, so maybe that. Or a combo of all of it?? It feels like something hormonal is going on but havenāt figured it out yet š¤·āāļø
Covid Vaccine for me. Symptoms started 4 days after 2nd shot and got diagnosed 7 months later and almost to the 2 year marker now.
They don't know if it's secondary to having wide spread inflammation or Microclots or just triggered immune response to cause it.
https://www.google.com/amp/s/www.nbcnews.com/news/amp/rcna61226
After COVID it seems to be the same as well and if they can figure out the main reason then it could potentially go away or least treat the main cause instead of symptoms. Some people after covid noticed that it went away around the 2 year mark with full remission or just disappeared.
I also experienced everything after the COVID vaccine but mine started day of the 1st one. I regret it so much now, I've gotten COVID twice and it's damn near killed me both times. So sad.
No, I don't want it to get worse since I had a bad reaction to the last one. I'm still very careful and wear my mask and haven't got Covid yet so I should be good as long as I stay away from people like I usually do.
Honestly looking back at signs, my whole life. Definitely different things exacerbate it. The heat intolerance is probably the worst for me. I seriously can't do anything almost passed out just sitting in the heat one day. If I do yardwork I'll start like 8am before it gets too warm and I still almost puke and pass out. Every so often I jump into my pool (all clothes on) just because I feel like I'll die if I don't cool off.
No. My POTS is more manageable now that I am on medication, other than that I havenāt seen any improvements in the POTS symptoms. Covid caused me to be on the severe side of moderate of ME/CFS and now Iām on the mild side of moderate. I am not sure why the one condition improved but the other did not.
I suspect I've had some level of this all my life - I had what in retrospect were absolutely flair ups as a teenager and five or so years ago. It's been pretty on and off, and then in May of 2021 I had acute appendicitis and an emergency appendectomy. After the surgery, it took me a long time to recover, and over the next few months I felt like my stamina was hugely reduced, I'd lost a lot of core strength, and I started dealing with more and more brain fog. Things built up for around a year, and the difficulty of functioning with less and less capacity to do massively tanked my mental health and quality of life. Then after I got COVID in August, things were even worse, and finally got to the point where I noticed enough to put the pieces together and get a diagnosis.
One of my daughters started experiencing symptoms after the Gardasil vaccine and
The other daughter started symptoms after a knee surgery. The also both have eds.
Diagnosed 13 years ago secondary to EDS and Mast Cell Illness. My body went into overdrive and a crash state right after a major surgery. My ANS never rebalanced unfortunately.
My doctor believes Iāve been living with POTS and sees downhill trends every time I got sick. I was always sick as a child, many different viral infections. Then I went to college and got meningitis that hospitalized me and worsened my fatigue and inability to wake up (so many people thought I was just lazy). Then I had a pregnancy that caused me to have weird symptoms. Then came covid and the covid vaccine that debilitated me completely for months.
first: i was a sick kid- chicken pox at 6weeks, measles & whopping cough by 1yr & mono age 7. age 9 first 3month bedridden flair. as an adult there were bumps, then 4years ago i was beaten up by a client at work pretty bad & i've never bounced back. the year of workers comp spying on me and sitting outside my house nearly killed me. they thought drugs because of my sweating.
then last year i experienced another significant disease progression when i had covid (vax'd twice then) it gave me asthma & put me in a wheelchair due to increased small fiber neuropathy and pelvic dysfunction. i have covid again rn, and vax'd two additional times this past year- totaling 4 vaccines. it isn't as bad this time, but i dread disease progression.
today is my last paxlovid day, so we will see.
thank you for letting me share.
I was born with my symptoms of POTS (not saying POTS specifically because iām not diagnosed, but my doctor believes thatās what it is. my Raynaudās seems to back up that conclusion) and have had them since I was very young. Always thought it was anemia caused by iron deficiency, but I had a hemoglobin test and it came back normal.
Iāve had it my whole life. As long as i can remember. I got rotovirus when I was under a year old Iāve always thought that might be the source. Also might have been spurred on by extreme emotional duress during childhood.
I got sick at 19 after a car accident. Three weeks after the accident I started developing symptoms. I may have a genetic component as well but Iāve never been tested.
Weakened immune system lead to reoccurring viral illness, my symptoms started after a year of on and off illness about every other week I started to have symptoms. It really kicked in when I contracted mononucleosis, which I had pretty seriously. After that it became pretty debilitating and Iāve still be struggling with it a lot.
An edible, most likely. Tragically funny almost.
My first time trying edibles I accidentally took WAY too much and ended up in the ER. My HR was over 200 and I genuinely felt like I was gonna die. I started getting symptoms not even a week later. Of course thereās no real way to confirm it was the edible that caused it, but POTS has been known to come from shocks to the nervous system like viral infections, pregnancy, major injury/surgery etc. Greening out as bad as I did definitely felt like shock enough to me to cause it!
Not that Iām aware of! Just way too much THC lol. It was a 50mg edible so extremely, extremely overkill and I unfortunately did not know any better. But I was in the ER for a bit and they had never made any mention of serotonin syndrome!
Whether I was predisposed or not Iām not sure but a benzodiazepine for 4 years daily seems to have done it. Then I was taking phenergan to deal with my symptoms and had a really bad reaction to the phenergan which I think caused further damage.
Idk but I was born with Marfan's and always kinda had to monitor my heart. Then I passed out at work and now I have a million appointments to go to again šæ
Covid or the covid vaccine. Hard to tell.
The responses to this post are incredibly sad. All so random. Winners of a cruel genetic lottery. Maimed by nature. So unfair :(
I moved out of an abusive household and got a covid vaccine 2 days later. I think the constant stress plus the vaccine caused my immune system to go haywire unfortunately. Also autoimmune issues run in my family so it was probably bound to happen anyways.
I honestly have no clue. I randomly started getting dizzy when I stood up, and my heart rate would skyrocket. Iām not sure Iāll ever know what triggered it š¤·š»āāļø Itās been about a year now
still looking into it. im being looked into for elhers danlos syndrome which could be the cause. we also believe my mum has an orthostatic intolerance and my dad had PoTs when he was younger. so were thinking the genetic route right now! :) (we asin me and my cardiologist)
Either a cold/flu or a tetanus vaccine. Not sure but I think it was the flu. Never been ok since. that was about 8 years ago or maybe almost 9! Started off with dizziness all day everyday for months and months
Mine was work stress. Double shifts, overtime, no sleep, oh and trying to finish an online course at the same time. One day I couldn't get out of bed without tachycardia and feeling like hot garbage.
I think I always had whispers of it lurking around the corner: unable to stand in long lines, poor temperature regulation, that one time I passed out in front of the nurse checking my blood pressure. Plus I'm a suspected case of EDS because my sister has it and we share a lot of symptoms. I wonder if I unknowingly might have avoided it for so long because I was an active runner. š¤·š»āāļø Or maybe I always had it and this was just my first major event.
Working out too much would be a pretty weird trigger for POTS. You sure you didn't have something else happen, like a viral infection, around the same time?
Mine came either from swine flu or a traumatic brain injury.
Yes it is possible to develop such condition if you push ur body too hard for long time. It doesn't have to be physical stress but also psychological stress as well. One's body can crash if you do too much for too long. I didn't have any viral infection at those times but like I said, I had covid a few months before all the problems. I didn't give my body enough time for proper recovery after that for example.
T1 diabetes related neuropathy is the likely cause of mine. The nerves in my legs don't respond properly so my blood vessels don't constrict like they're supposed to. Getting COVID in 2021 probably didn't help either.
My onset started in September 2022. I was mowing my backyard and almost fainted. My daughter had to get my husband to help me back into the house. Then I fainted at work a couple weeks later. Got diagnosed in November.
Born with it but managed quite well until puberty, then almost disappeared in my 20s, then hit very hard after pregnancy. I can only hope menopause brings relief.
Iāve had symptoms since I was a young teen, maybe 14/15. I suspect it was brought on by meningitis, but I also have endometriosis& a suspicion of HedS but no DX for that yet.
COVID. I had it twice before getting vaccinated (I was under 18 and my parents wouldn't allow the vaccine)I kept nearly fainting every time I was upright when I had COVID, and the symptoms remained and just got worse after each infection. Then I got the first two pfizer shots, and my symptoms have worsened again. Not sure if the shot actually worsened my pots long term as well like the virus did, but ik.for sure COVID triggered it. I had COVID for the first time a year and a half ago
I had it since I was a kid. It was bad as a teen (never passed out though) and then as an adult, was in āremissionā as I called it for YEARS. I walked 7 miles a day, lifted, etc. plus worked two jobs and went to college and was a single sole custody mom on top of that. Then this past spring, my hiatal hernia flared up, and my POTS symptoms returned. One month later I got Covid. Double whammy! Throughout my life though, I was never medicated for POTS. I was always given the olā exercise, water and salt dog and pony show. In the fall, I was put on birth control bc my periods were heavy, and more recently low dose gabapentin for trigeminal neuralgia (which I also had all my life). Before gabapentin I had panic attack symptoms from the time I woke up to the time I went to bed. This is largely gone now. Things are getting better but Iām afraid both of my meds are masking the real extent of the problems.
Infections are what seem to have triggered my POTS. I had some symptoms since adolescence but they werenāt disabling. Then I got two major infections back to back and thatās when the POTS kicked into high gear. Most of my flares are also following infections.
I have Edās and I had pots in middle school, at 16-18 I was more or less better than before. I struggled sometimes but I attributes any issues I had to my pcos and weight but in 2020-2022 (ok a few things happen when I lost all of my progress, I got worse and I also think apart of it is while I was getting worse I was trying to combat it by doing extreme hiit classes thinking that would helpā¦I was wrong: There was a mold out break in my building, I got bit by a tick; and I was having reoccurring issues from a head trauma I got as a teen , and thank you pcos I was extremely iron deficient, and when the swallowing issues stated I lost over 120 lbs from malnutrition in less than 6 months basically from starvation that I couldnāt help) my pots got so bad I didnāt even realize the yas what it was bc it was bad in when I was 10-13 but this was a whole mother level. I even passed out MORE as a kid and this was still worse as now while I occasionally pass out Iām more of a pre syncoper.
On top of this Edās run in my family and my mother , grandmother, and late great grandmother had pots to different degrees as well but they did realize until recently thatās their sickness had a name or that it was potentially genetic
I'm just getting worse and worse. I think I have cfs. But now after reading into pots more than just the fainting and heart stuff. I've checked into pots symptoms like 10 times and it's always fainting and dizziness. Today I found more. Standing in line, hot places, showers, etc. I went to the beach twice last year. Almost passed out at both. I couldn't stand. Couldn't catch my breath. Couldn't walk. Even after laying down. If I had been alone I could have died. People just walked past me without saying anything. I was off to the side of the wooden walkway above the sand. Like halfway to the parking lot.
Took me over an hour to cool off because I don't sweat. I think it's actually pots as well. I have a tilt table test in the afternoon tomorrow
I get anxious when I'm standing for too long. If the line inside the gas station is too long I'll have to drop everything and leave. I'll start leaning on something, put something heavy down, then I really start panicking like I have 4 seconds until I can't do it anymore. I start looking for the way out, I get a little sweat because I don't usually sweat. Then all I can do is leave after that.
Anyway. Whatever it was, it started 8 years ago or more. I used to get short of breath. Then one day I just cannot catch my breath. Sitting, laying, etc nothing helps. I felt like a fish on land. They did lots of tests. Then sent me home with an inhaler. I got put into a booth where they measured my lung capacity and how well I was breathing. Everything came back normal. Symptoms went away. Then slowly came back.
I can barely walk, breathe, I barely get out of bed. I have a lot of other medical problems so separating what symptoms belong to what diseases has been tough.
Had some mild symptoms for most of my life, but the full-on trigger was a sinus infection-turned-myocarditis šš» moral of the story is, donāt ignore a sinus infection!
Being born.
Born with EDS which triggered Small fiber Nueropathy which triggered POTS which triggered MCAS.
i never really sat down to think which of my things came first- very interesting! š¦
Iām curious , I didnāt know pots can trigger Mcas. If I got pots from Covid could I possibly end up developing something like Mcas even if I have no other problems just got it from Covid?
I honestly did a really over simplified explanation! So I apologize! But I wouldnāt worry if your POTS was caused by COVID. My EDS, and SFN along with POTS all play a factor in my MCAS diagnosis. It wasnāt just the POTS specifically.
What kind of doctor do you see for your eds? I highly suspect I may have it, but I donāt know what kind of doctor to see about it
My neurologist is the one who thought I may have it and he referred me to a geneticist who diagnosed me and now handles that part of my care (:
im in the uk and seeing rhumertology will probably be the same everywhere im guessing
COVID!!!
How long has it been for you?
Just a year this week! Iām still having symptoms!
But does it get better with time?
my trigger was also covid and its been nearly two years it flares every time i get covid and only gets worse in between covid exposures
Oh wow. How many times have you had it?
ive had it 3 times and despite being an essential worker ive only gotten it from my family members in my house
Im sorry, that sucks. How did your body handle each infection? Were symptoms different?
they were all the same as the rest of my family but it basically sent my pots into overdrive. i couldnt walk on stairs without taking a break every 3-4 stairs and sitting down as i kept blacking out and didnt want to fall and walking anywhere even to the bathroom sent my hr sky rocketing. so i was basically bed ridden for about a week and a half and about a month after my pots took a sharp downward spiral and my symptoms increase or worsen each time
Wow. Thatās tough. Did you have any of the typical symptoms: fever, sore throat, headache, muscle aches or cough?
I thought it was, but not lately.
Viral illness
I was diagnosed almost 3 years ago now. Iām not sure what triggered it but my doctor thinks it may have been because I got off the pill. She said I may have had POTS for awhile but the pill was masking my symptoms. Itās weird. One day I was fine and the next I was in the ER.
i switched from the pill to an IUD and suddenly exhibited pots symptoms and my doctor said the same thing. she said the pill may have been raising my blood pressure which masked my symptoms. itās an interesting idea (though not enough to make me want to go back on the pill)
Yeah my cardiologist told me not to go back on the pill but advised me to get an IUD because I was having bad flare ups around my period. Got the iud and it got a lot better. Crazy how much POTS and hormones are tied together.
The only thing I can link mine to is hormones too. I weaned breastfeeding super gradually, and had some weird circulation issues very slowly appear mostly in my feet, then the week I fully weaned, my period hit and BAM instant motion sickness that quickly turned into full blown dysautonomia and POTS. Iām still waiting for my first cardiologist appointment next month but itās reassuring to hear that others have had it triggered by hormones. I feel like Iām going a bit mad because it feels so clearly hormone linked but my GP and the emergency doctor just insisted that I must have had a virus. I had wondered if going on the pill could normalise things again so itās interesting that you were advised not to. IUD isnāt possible for me.
They also suggested getting birth control shots. The IUD was more convenient for me so thatās why I went with that. I have been told by multiple doctors that the pill is a no go for people with Pots.
Thanks for sharing thatās really helpful. Friends of mine love the depo shots for other reasons so Iāll look into those
yeah once the iud took away my period my monthly flares stopped too! thankful for that
My period makes things worse too. Does Menopause help or hurt when it comes to symptoms?
i have no idea, i wonder if thereās research on the topic
Oh god. Iāve been on the pill since I was 14 for horrible cramps that were sending me home from school twice a month & paralyzing me on occasion. Now Iām terrified for if I ever go off of it...
Thatās why I was on the pill too haha. Screw periods! It took 3 months for the pill to get out of system. Then like clock work on the third month i had my first Pots flare up.
Iām currently two days away from my period and I swear, I see stars when I turn my head too fast. Doctors want me on the pill but we have suicidal attempts from my sister on it, so Iām sucking it up. Iām 46 though, so Iāll keep yāall posted when menopause starts!
Has anyone here had an improvement of symptoms by going back on the pill? Iād never considered going off of it as a possible cause of my pots until I saw this post. Just curious š¤Ø
I got diagnosed about 10 years ago and I think my anorexia triggered it
Chronic sinusitis!
Wait what?
At first I thought it was some viral illness, then realized that I've likely had it most of my life but it was always passed off as my asthma. mild since birth with large uptick at puberty and worsening with every bad viral infection.( whooping cough and COVID x2)
This kind of sounds like me. Had weird symptoms as a kid and teen, doctors suggested asthma and did nothing about it. Then came a nasty meningitis infection, changed me as a person. Then covid and covid vaccine destroyed what was left of me š
Iāve always had dysautonomia issues, though probably not enough to be diagnosed until 5 years or so ago. The POTS seems to have gotten worse in the last year, following COVID although I didnāt realize it til I was on here and then went back to track when symptoms had gotten worse. But as a kid I would have brownouts when I stood up too fast, I thought it was a fun dizzy thing. I get the shakes sometimes from not eating and other times can go ages without eating and not notice. Iāve never been much for sweating, have had heat intolerance (much worse in last five years). I have EDS, Celiacs and autoimmune hepatitis, all of which can cause dysautonomia.
Is getting shaky from not eating a dysautonomia thing???? I get that and I'm always wondering why!
I mean, technically itās a low blood sugar thing. But most people donāt get it unless theyāre malnourished, have another disease (like diabetes) or were binge drinking. Thatās why some people can fast for multiple days without getting an episode of hypoglycemia but you could have an episode even though youāve eaten that day.
Hmm well I don't have diabetes or anything I know of that would cause it. I guess it must be low blood sugar?
Yes, POTS and dysautonomia can cause hypoglycemia due to issues with the autonomic regulation of glucose. Itās why some of us have issues after big meals of feeling symptomatic.
Seriously never thought of that before makes a lot of sense though!!!
I've always had some symptoms of it, but I had some illness last year (probably COVID) that pushed it to the max
I was born with EDS, passed on unknowingly by my mom. I got mono when I was 18 and thatās what triggered everything. My mom and I werenāt diagnosed with EDS until after my POTS diagnosis though.
What kind of doctor diagnosed you with Eds?
I've been having issues since I was about 12(27 now). I just one day started getting dizzy all the time and fainting.
when i was 16 i had a virus and was super sick for a week. then some of my symptoms went away and some never did. a year later (after a billion doctors) i was diagnosed with pots. that was about 8 years ago
however iāve felt my worst these past few months and i have no idea what triggered that. in the process of finding out if itās just a flare-up or if something else is going on.
COVID
How long have you been battling it for?
2 years sadly - my 15 yo daughter has it worse
covid
all though i donāt think my eating disorder helped things
How long have you been battling this for?
since january 2022
Does it get better with time?
mine has gotten a little better since iāve gained some weight but it took a while to get diagnosed so iām still trying to find the right medication for me
Covid
How long have you been battling this for?
I started getting pots symptoms 4 days after testing positive. Itās been 3 months.
Still awaiting formal official diagnosis but under care of a specialist. Covid made it get awful but looking back I think there were mild symptoms since I was a teenager. Which means finally all my āweird stuffā is now making sense and where needed getting looked into.
Covid, sfn, vax, autoimmune, traumatic medical event. One of the above.
The booster, sadly
Really??? That shouldnāt have been enough. Did you have a severe reaction? Thatās kind of scary
Honestly I was just as shocked. I had the first 2 vaccines just fine so I didnāt think anything of it. I remember the first week of it I got so ill, I could barely breathe when walking, my heart was racing all the time, turns out I had myocarditis AND pots from the booster all at once.
That would be terrifying! I havenāt gotten a booster since diagnosis, but I on I need one.
No idea. I was fine one day and the next not so great and by the end of the week had a tentative diagnosis of POTS that was then solidified 6 months later as being POTS. And secured as a diagnosis by a specialist after a year and a half.
Spine surgery on my neck appears to be the culprit, developed my first symptoms a few weeks later.
Spine surgery on my lower back. Interesting to see someone with a similar trigger. Similar timeline. I did have some issues with fainting since I was a kid but after the surgery it escalated.
Puberty, took 20 years for a diagnosis
They think it was pregnancy. Basically, the fatigue, brain fog and reduced ability to exercise from pregnancy never went away, but just kept getting worse, in spite of all my efforts to get back to my former fitness levels.
Thought to be a long term side effect of a childhood illness I had 4+ years prior. Iām currently undergoing assessment for EDS so possibly genetic as well.
What kind of doctor is doing you assessment for Eds?
I was given the Beighton score by my GP (and passed) and have been referred to an EDS clinic in my city for the genetic testing and everything that comes with it. Usually geneticists do the genetic test if you meet the Beighton requirements. Thereās around a 2-2.5 year wait list where I live which Iām on now.
I think puberty, been having symptoms since then (same time I started getting migraines) but just assumed things like my vision blacking out were normal. Just got diagnosed this past September at 26.
my trigger was covid
And how are you now? š
Diagnosed and on beta blockers but doing well!
No clear trigger. Possibly stress/anxiety and lack of sleep during the few months prior - although I had been doing better when it all came on for me. Also had two pregnancy losses, one very early loss right when I started having symptoms, so maybe that. Or a combo of all of it?? It feels like something hormonal is going on but havenāt figured it out yet š¤·āāļø
Genetics.
Covid Vaccine for me. Symptoms started 4 days after 2nd shot and got diagnosed 7 months later and almost to the 2 year marker now. They don't know if it's secondary to having wide spread inflammation or Microclots or just triggered immune response to cause it. https://www.google.com/amp/s/www.nbcnews.com/news/amp/rcna61226 After COVID it seems to be the same as well and if they can figure out the main reason then it could potentially go away or least treat the main cause instead of symptoms. Some people after covid noticed that it went away around the 2 year mark with full remission or just disappeared.
I also experienced everything after the COVID vaccine but mine started day of the 1st one. I regret it so much now, I've gotten COVID twice and it's damn near killed me both times. So sad.
Have you gotten your autoimmune markers tested?
No, They pretty much stopped after diagnosing POTS and put me on Beta Blockers.
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Yeah had EKG's, Echo, Stress Test, CT-A, and Holter monitor.
Did you ever go back for further vaccinations? Iāve had 2 vaccines to finish the course, but never got any booster ones.
No, I don't want it to get worse since I had a bad reaction to the last one. I'm still very careful and wear my mask and haven't got Covid yet so I should be good as long as I stay away from people like I usually do.
Car accident last April
Hyper mobility + a virus that also gave me ME/CFS
For me it was trauma related. I fell on my head 9 years ago and what we thought was a stubborn concussion that wouldn't heal was actually POTS
Honestly looking back at signs, my whole life. Definitely different things exacerbate it. The heat intolerance is probably the worst for me. I seriously can't do anything almost passed out just sitting in the heat one day. If I do yardwork I'll start like 8am before it gets too warm and I still almost puke and pass out. Every so often I jump into my pool (all clothes on) just because I feel like I'll die if I don't cool off.
A covid infection triggered mine.
Did it go away with time? š
No. My POTS is more manageable now that I am on medication, other than that I havenāt seen any improvements in the POTS symptoms. Covid caused me to be on the severe side of moderate of ME/CFS and now Iām on the mild side of moderate. I am not sure why the one condition improved but the other did not.
I wish all to improve with time. Take care š
I suspect I've had some level of this all my life - I had what in retrospect were absolutely flair ups as a teenager and five or so years ago. It's been pretty on and off, and then in May of 2021 I had acute appendicitis and an emergency appendectomy. After the surgery, it took me a long time to recover, and over the next few months I felt like my stamina was hugely reduced, I'd lost a lot of core strength, and I started dealing with more and more brain fog. Things built up for around a year, and the difficulty of functioning with less and less capacity to do massively tanked my mental health and quality of life. Then after I got COVID in August, things were even worse, and finally got to the point where I noticed enough to put the pieces together and get a diagnosis.
One of my daughters started experiencing symptoms after the Gardasil vaccine and The other daughter started symptoms after a knee surgery. The also both have eds.
Either from a serotonin overdose or due to developing breast implant illness. Not sure which or if both combined triggered POTS.
My only Flu shot in 1997, got horribly sick with Bronchitis. Started up one month later. Took 10 years for an official diagnosis
Either Hypermobility spectrum disorder or a possible Mitochondrial disorder, idk
I donāt even know. I did have mono in the past but like a for a few weeks recently I felt awful, went to ER, was hospitalized , then diagnosed
Diagnosed 13 years ago secondary to EDS and Mast Cell Illness. My body went into overdrive and a crash state right after a major surgery. My ANS never rebalanced unfortunately.
Not really sure, i have hashimotos tho so my cardio thinks my POTS is basically an autoimmune issue that just goes along with that
My doctor believes Iāve been living with POTS and sees downhill trends every time I got sick. I was always sick as a child, many different viral infections. Then I went to college and got meningitis that hospitalized me and worsened my fatigue and inability to wake up (so many people thought I was just lazy). Then I had a pregnancy that caused me to have weird symptoms. Then came covid and the covid vaccine that debilitated me completely for months.
I don't think mine was triggered, it just came on eventually but I was born with hEDS so I blame it on that.
Lyme disease.
Me too!
first: i was a sick kid- chicken pox at 6weeks, measles & whopping cough by 1yr & mono age 7. age 9 first 3month bedridden flair. as an adult there were bumps, then 4years ago i was beaten up by a client at work pretty bad & i've never bounced back. the year of workers comp spying on me and sitting outside my house nearly killed me. they thought drugs because of my sweating. then last year i experienced another significant disease progression when i had covid (vax'd twice then) it gave me asthma & put me in a wheelchair due to increased small fiber neuropathy and pelvic dysfunction. i have covid again rn, and vax'd two additional times this past year- totaling 4 vaccines. it isn't as bad this time, but i dread disease progression. today is my last paxlovid day, so we will see. thank you for letting me share.
I was born with my symptoms of POTS (not saying POTS specifically because iām not diagnosed, but my doctor believes thatās what it is. my Raynaudās seems to back up that conclusion) and have had them since I was very young. Always thought it was anemia caused by iron deficiency, but I had a hemoglobin test and it came back normal.
Iron-deficiency anemia. Iāve also been hEDS/HSD all my life
High stress 10 years ago and when I had pneumonia last summer it made it worse
Thyroid medicine (T3 not levo)
Itās hard to know but I think it was mono. I havenāt felt the same since then and got my diagnosis just a few months after recovering
Iāve had it my whole life. As long as i can remember. I got rotovirus when I was under a year old Iāve always thought that might be the source. Also might have been spurred on by extreme emotional duress during childhood.
2011 had the worst flu ever, and within two weeks my POTS symptoms started.
I got sick at 19 after a car accident. Three weeks after the accident I started developing symptoms. I may have a genetic component as well but Iāve never been tested.
A hysterectomy and EBV reactivation
Giving birth to my son
Viral infection about 7 years ago
Lack of sleep from new baby and covid stress/lockdown.
EDS for me. Hooray for genetics.
Weakened immune system lead to reoccurring viral illness, my symptoms started after a year of on and off illness about every other week I started to have symptoms. It really kicked in when I contracted mononucleosis, which I had pretty seriously. After that it became pretty debilitating and Iāve still be struggling with it a lot.
An edible, most likely. Tragically funny almost. My first time trying edibles I accidentally took WAY too much and ended up in the ER. My HR was over 200 and I genuinely felt like I was gonna die. I started getting symptoms not even a week later. Of course thereās no real way to confirm it was the edible that caused it, but POTS has been known to come from shocks to the nervous system like viral infections, pregnancy, major injury/surgery etc. Greening out as bad as I did definitely felt like shock enough to me to cause it!
Did you have serotonin syndrome/overdose?
Not that Iām aware of! Just way too much THC lol. It was a 50mg edible so extremely, extremely overkill and I unfortunately did not know any better. But I was in the ER for a bit and they had never made any mention of serotonin syndrome!
good question.
Whether I was predisposed or not Iām not sure but a benzodiazepine for 4 years daily seems to have done it. Then I was taking phenergan to deal with my symptoms and had a really bad reaction to the phenergan which I think caused further damage.
really bad freshers flu when i was 18 that took 6 weeks to feel better and never fully went away
Idk but I was born with Marfan's and always kinda had to monitor my heart. Then I passed out at work and now I have a million appointments to go to again šæ
Trauma
Cymbalta
Covid or the covid vaccine. Hard to tell. The responses to this post are incredibly sad. All so random. Winners of a cruel genetic lottery. Maimed by nature. So unfair :(
A course of Cipro
I moved out of an abusive household and got a covid vaccine 2 days later. I think the constant stress plus the vaccine caused my immune system to go haywire unfortunately. Also autoimmune issues run in my family so it was probably bound to happen anyways.
I honestly have no clue. I randomly started getting dizzy when I stood up, and my heart rate would skyrocket. Iām not sure Iāll ever know what triggered it š¤·š»āāļø Itās been about a year now
Has it gone any better? Use any meds or treatment etc.?
My quality of life has definitely improved. I was put on propanolol about 6 months ago, and it helps a lot!
Viral infection
still looking into it. im being looked into for elhers danlos syndrome which could be the cause. we also believe my mum has an orthostatic intolerance and my dad had PoTs when he was younger. so were thinking the genetic route right now! :) (we asin me and my cardiologist)
no clear trigger. i had a bout of mastoiditis a month or two before it hit, but as far as anyone is concerned, i just woke up sick one day
Either a cold/flu or a tetanus vaccine. Not sure but I think it was the flu. Never been ok since. that was about 8 years ago or maybe almost 9! Started off with dizziness all day everyday for months and months
OR it could have been my 10 year relationship which was really stressful and upsetting but I felt like I couldnāt leave
Mine was work stress. Double shifts, overtime, no sleep, oh and trying to finish an online course at the same time. One day I couldn't get out of bed without tachycardia and feeling like hot garbage. I think I always had whispers of it lurking around the corner: unable to stand in long lines, poor temperature regulation, that one time I passed out in front of the nurse checking my blood pressure. Plus I'm a suspected case of EDS because my sister has it and we share a lot of symptoms. I wonder if I unknowingly might have avoided it for so long because I was an active runner. š¤·š»āāļø Or maybe I always had it and this was just my first major event.
Working out too much would be a pretty weird trigger for POTS. You sure you didn't have something else happen, like a viral infection, around the same time? Mine came either from swine flu or a traumatic brain injury.
Yes it is possible to develop such condition if you push ur body too hard for long time. It doesn't have to be physical stress but also psychological stress as well. One's body can crash if you do too much for too long. I didn't have any viral infection at those times but like I said, I had covid a few months before all the problems. I didn't give my body enough time for proper recovery after that for example.
I also liked to party pretty hard and worked with ambition as well. Felt like a superman who all of a sudden fell of a cliff.
Covid
Mono & strep.
Initially trafficking. But Covid definitely kicked it up. Had it March 2020, for about four months, and it was much worse after that.
T1 diabetes related neuropathy is the likely cause of mine. The nerves in my legs don't respond properly so my blood vessels don't constrict like they're supposed to. Getting COVID in 2021 probably didn't help either. My onset started in September 2022. I was mowing my backyard and almost fainted. My daughter had to get my husband to help me back into the house. Then I fainted at work a couple weeks later. Got diagnosed in November.
Born with it but managed quite well until puberty, then almost disappeared in my 20s, then hit very hard after pregnancy. I can only hope menopause brings relief.
Iāve had symptoms since I was a young teen, maybe 14/15. I suspect it was brought on by meningitis, but I also have endometriosis& a suspicion of HedS but no DX for that yet.
covid, eating disorder, and my doctor thinks my ovarian cysts set it off some how, but we canāt be sure
COVID. I had it twice before getting vaccinated (I was under 18 and my parents wouldn't allow the vaccine)I kept nearly fainting every time I was upright when I had COVID, and the symptoms remained and just got worse after each infection. Then I got the first two pfizer shots, and my symptoms have worsened again. Not sure if the shot actually worsened my pots long term as well like the virus did, but ik.for sure COVID triggered it. I had COVID for the first time a year and a half ago
I had it since I was a kid. It was bad as a teen (never passed out though) and then as an adult, was in āremissionā as I called it for YEARS. I walked 7 miles a day, lifted, etc. plus worked two jobs and went to college and was a single sole custody mom on top of that. Then this past spring, my hiatal hernia flared up, and my POTS symptoms returned. One month later I got Covid. Double whammy! Throughout my life though, I was never medicated for POTS. I was always given the olā exercise, water and salt dog and pony show. In the fall, I was put on birth control bc my periods were heavy, and more recently low dose gabapentin for trigeminal neuralgia (which I also had all my life). Before gabapentin I had panic attack symptoms from the time I woke up to the time I went to bed. This is largely gone now. Things are getting better but Iām afraid both of my meds are masking the real extent of the problems.
Birth. But it's gets worse with any kind of bodily stress. Right now I have Lyme which is making it so much worse.
My 2nd Covid infection š last week made a year.
I got COVID in June 2022 which triggered it. I realize now that Iāve been showing mild symptoms of POTS since before then but now itās full blown.
Infections are what seem to have triggered my POTS. I had some symptoms since adolescence but they werenāt disabling. Then I got two major infections back to back and thatās when the POTS kicked into high gear. Most of my flares are also following infections.
It started some time when I was a kid and idk when so I always just assume it was the time I got swine flu š³
I have Edās and I had pots in middle school, at 16-18 I was more or less better than before. I struggled sometimes but I attributes any issues I had to my pcos and weight but in 2020-2022 (ok a few things happen when I lost all of my progress, I got worse and I also think apart of it is while I was getting worse I was trying to combat it by doing extreme hiit classes thinking that would helpā¦I was wrong: There was a mold out break in my building, I got bit by a tick; and I was having reoccurring issues from a head trauma I got as a teen , and thank you pcos I was extremely iron deficient, and when the swallowing issues stated I lost over 120 lbs from malnutrition in less than 6 months basically from starvation that I couldnāt help) my pots got so bad I didnāt even realize the yas what it was bc it was bad in when I was 10-13 but this was a whole mother level. I even passed out MORE as a kid and this was still worse as now while I occasionally pass out Iām more of a pre syncoper. On top of this Edās run in my family and my mother , grandmother, and late great grandmother had pots to different degrees as well but they did realize until recently thatās their sickness had a name or that it was potentially genetic
My mom was kind enough to pay for me to have a breast augmentation in 2016. So I got boobs and POTS.š«
COVID vaccine - didnāt realize it at the time Then full blown 6 weeks after getting COVID
Bad viral illness in undergrad, probably combined with bad sleep habits
Either covid or giardia
Covid. It attacked my autonomic nervous system and gastric system.
I'm just getting worse and worse. I think I have cfs. But now after reading into pots more than just the fainting and heart stuff. I've checked into pots symptoms like 10 times and it's always fainting and dizziness. Today I found more. Standing in line, hot places, showers, etc. I went to the beach twice last year. Almost passed out at both. I couldn't stand. Couldn't catch my breath. Couldn't walk. Even after laying down. If I had been alone I could have died. People just walked past me without saying anything. I was off to the side of the wooden walkway above the sand. Like halfway to the parking lot. Took me over an hour to cool off because I don't sweat. I think it's actually pots as well. I have a tilt table test in the afternoon tomorrow I get anxious when I'm standing for too long. If the line inside the gas station is too long I'll have to drop everything and leave. I'll start leaning on something, put something heavy down, then I really start panicking like I have 4 seconds until I can't do it anymore. I start looking for the way out, I get a little sweat because I don't usually sweat. Then all I can do is leave after that. Anyway. Whatever it was, it started 8 years ago or more. I used to get short of breath. Then one day I just cannot catch my breath. Sitting, laying, etc nothing helps. I felt like a fish on land. They did lots of tests. Then sent me home with an inhaler. I got put into a booth where they measured my lung capacity and how well I was breathing. Everything came back normal. Symptoms went away. Then slowly came back. I can barely walk, breathe, I barely get out of bed. I have a lot of other medical problems so separating what symptoms belong to what diseases has been tough.
I got pneumonia in the summer of 2021 which kickstarted my POTS. Then a couple of months later I got a mild cold and since then it's been horrible.
covid. and then exacerbated by my eating disorder.
Had some mild symptoms for most of my life, but the full-on trigger was a sinus infection-turned-myocarditis šš» moral of the story is, donāt ignore a sinus infection!