As someone with pots I can say that not all symptoms go away by just laying down there are a lot of symptoms associated with pots not just tachycardia and being tired
So many times people have said take a couple of paracetamol or a lemsip and have an early night. You’ll be fine by morning! I have a few of the usual comorbidities that go with too, so I take morphine for Ed’s. So sometimes I’ve just said I don’t take paracetamol because I have two kinds of morphine…the look on people’s faces 😂 I’m not bothered if it’s a stranger, but when it’s family or people I’ve known a long time it’s irritating! A few weeks ago an aunt recently diagnosed with fibromyalgia 🙄 said you should take some amitriptyline, I’m on 10 mg…my reply ‘I take 150mg’ which is correct. Then she said I must have fibromyalgia like her…nope, was misdiagnosed with that years ago. It’s EDS, POTS etc. you ought to try co codamol for pain because she has it and she’s not in pain anymore! To have a pain free day is a dream! So I reeled off my medications…😤 she can be bloody annoying! X
I feel like an elephant is setting on my chest when I lay down. I have used a CPAP for nearly 15 years due to sleep apnea. I swear when I lay down it sounds like I’m hearing drums in the attic…but it’s not just at home…it’s anywhere. But back to the laying down and even feeling like someone invisible is choking me around my throat. I am 48 but experienced this 1st when I was 15…I was awake and laying on the couch and couldn’t scream or call for help…it stopped as soon as I finally could push air they my throat again. Felt like it lasted a good 30 seconds. Scared the living shit out of me! Had a scope a week ago and found inflammation in my throat (all over actually) and gut is basically leaky and pockets of diverticulosis. Said I have allergy to nuts and shellfish and is causing the swelling in my throat. Been eating all kinds of nuts and shrimp trying to be healthier lol. Damn 😂😩
Correct. I just got out of the Cardiac ICU after 8 days with this condition. I had my heart shocked twice and about 6 different iv drips. It's a horrible problem.
I was diagnosed with this after having COVID. Never had any issues until a few months ago and now I struggle to do daily activities. I haven’t been able to work and can’t afford medical bills as a result. I’m not convinced it’s just pots because of videos like this that state you just get dizzy when you stand up. I have an overload of symptoms out of the blue. Standing, sitting, laying, sleeping… it doesn’t matter what I do. Nausea, palpations, chest pain, shortness of breath, cold sweats, numbness/pens and needles, clammy/pale skin, tremors, partial loss of vision, incontinence, with a great sense of impending doom. I just have to let it run it’s course and hope for the best. It’s a terrible way to live. I’m hoping for a misdiagnoses because there isn’t any cure for POTS. My heart goes out to everyone that has to deal with this. I pray for you.
Did you ever get answers? I’m currently going through the same thing. It’s horrible. Everything you said is exactly what I’m going through, I can’t live my normal life.. my doctor said I had low B 12, and folic acid so I started taking B 12 and folate supplements, but I continue to take it and my blood work returns to normal but I’m still feeling horrible. I had Covid in March of 2020, and this started happening in April 2021.
@@PokeBrokeX I'm still about the same. I went to get a chest ct for shortness of breath, and turns out I had/have bacterial pneumonia. Which after antibiotic and steroids still has not gone away. 6 months after diagnosis.
Sounds totally like POTS. I have the same symptoms. Some people have just a few symptoms, others like me and you have a lot more. Some people are able to live a more normal life, some are completely bed bound. I'm somewhere in the middle.
This is a huge issue within the medical community because all drs associate POTS with is this little tiny box of symptoms. There are so many other issues even such as having severe palpitations, weakness, fatigue just caused by eating. What you are describing isn’t a POTS attack, it is way less than even a general day in the life of a POTS patient.
Anybody get this immense pressure in their head when dealing with this, was diagnosed with POTS and I have all of the normal symptoms everyone has described here, but I also get this immense inter cranial pressure in my head, sinuses, temples, ears, etc. Best way to describe it, is that it feels like someone put a balloon in my head and is inflating it. Majority of my symptoms die down when I finally can lay down. I’ve been dealing with this problem for over a month now and it’s effecting my new job, any social life I have, and just pretty much kept me in the house. I don’t wish this on anyone… truly anyone
@@PokeBrokeX I’m doing a lot better (knock on wood). Then again I am taking loads of meds now. I’m on Propranolol, Sumatriptan as needed, Clonazepam twice a day, Magnesium, Vitamin E. So yeah, lots of stuff. But luckily the pressure in the head went away, the doctors believe it was associated with a very severe migraine that just continuously got worse and worse, and the sudden bouts of tachycardia didn’t help. I still get heart palpitations here and there and bouts of dizziness, but I’m doing much much better than I was. There were days I couldn’t get out of bed. And I’m 23 years old and workout everyday and have a physically demanding job, it was rough.
An E.R doctor recently diagnosed me with having ‘panic attacks’. But I’ve been looking around seeking for knowledge about the symptoms, and the more I searched the more my diagnosis points towards POTS! I’ve heard that lots of people get misdiagnosed and it takes years for doctors to realize that someone actually has POTS instead of some kind of panic disorder. I hope I can get to the bottom of this soon.. the symptoms can be exhausting!
Hi, I have just been diagnosed with POTS, took a year and a half for a diagnosis. But when I had what you might call a bad POTs period I describe it to me GP and work manager as it's like your having a panic attack (body shaking heart racing, possible hyperventilating) but my brain is complete calm (except for wondering why my body is doing this). I did not know what POTs was at this stage. But I did know my GP did think it was a bit weird and kept asking am I stressed or anxious. But he was a good doctor and managed to eventually set me up with lot of tests and my heart rate was always high when I went to see him. I hope you get the diagnosis you need soon. I think its a bit silly telling someone they have anxiety or depression if they tell you there fine in the brain (if you get what I mean). If you have depression your gonna know about it. (As that's kinda what happened with me, but people may have depression and anxiety on top of POTs, this is just what I experienced)
Did you get it figured out? Cuz SAME. After I had my daughter in December my heart rate spikes everytime I'm standing and I get dizzy. My feet turn purple when I stand/ shower and I feel so short of breath/ chest pain/ palpitations. It freaking SUCKS! it's more than anxiety... a cardiologist looked at me and said "you're tests are normal its not your heart" after doing 1 ecg and bloodwork. Thankfully I found a good doctor who is taking me seriously. I will find out next Thursday.
My doctor also told me that it's just panic attacks so i took anxiety meds and it did not work. I'm now researching about pots all my symptoms point to it.
@@Sam-pg9hr Turns out I was extremely anaemic! The stupid ER doctors didn’t do any blood work to check my haemoglobin levels. I finally got my doctor to look into it. The racing heart, the dizziness and fatigue were all from it. I’m on high doses of iron for the past month and my symptoms have improved a lot! Hope you guys can get properly diagnosed so you can start feeling better!
Soooooo frustrating that PoTS is diagnosed as anxiety! I’m a pretty relaxed person with zero anxiety issues so why does my pulse go up to 135+ and blood pressure stay normal and unaffected when I’m standing but pulse will immediately go back down to 65-80 when I lay down?!?! Am I a fucking magician 🤣🤣🤣
This account of symptoms is massively sugar coated, there are loads more very common issues which are not mentioned & people get symptoms sitting down as well a lot of the time
I have POTS and Celiac , I have had the attacks awaken me during sleep 💤😴 and keep me up for hours ,not dare get up or else wake up on the floor after a the crash. I have B12 deficiency.
@Isabella Ethen Japan and India has banned HPV vaccines based on the pots, side effects and symptoms of the hpv vaccinated girls in those countries . May be HPV vaccine works only for some ethnicity and not for others.
@@cnance1972 There are two types of B12. All say vegetarians have B12 deficiency . There are people who eat and animals which eat only meat also have B12 deficiency. The issue is absorbtion of B12 vitamin if you consume. Unless gastro is good B12 cant be absorbs even if we eat more B12 vitamin food/meat. I am a layman . It is a suggestion.
I have EDS a connective tissue disorder which gives me POTS my autonomic system has failed I also have MCAS mast cell activation syndrome , I have been collapsing since the 80s lol I’m 50 now and I find breathing exercises daily helps pots and leg stockings and I also have a light exercise bike that I can use sitting down in a chair it just cycles your legs but slowly makes them stronger and that helps my POTS .... no matter what our reasons for having it it’s a right pain in the bum ..God bless you all hope this helps ...
It's also associated with spontaneous spinal CSF leaks, the most overlooked association. In a study I read, 100% of people with spontaneous CSF leaks met the criteria for POTS, even if not all people with POTS had a CSF leak obviously. It's very important to pay attention to the story behind the symptoms. If it's related to any sort of physical spinal trauma, even if mild, or if a big feature of it is a positional headache that gets worse when up and goes away when laying flat, a person should be worked up for a CSF leak with imaging and/or trial a blood patch.
@@mikelbrenn111 A leak of CSF through a tear or hole in the dura, or via rogue vein called a venous fistula sometimes. It can occur in the cranium but I was only referring to spine based leaks, as cranial leaks do not cause the same symptoms as spinal leaks. The main symptoms will be orthostatic, much like POTS, and there is a significant overlap in clinical symptoms. Usually a CSF leak will include a headache (and other neurological symptoms) that go away when laying flat but come on when upright, sometimes not immediately if the leak is slow, sometimes it can be made worse by a valsalva maneuver too. Usually the positional element is clear in the beginning, but if the leak becomes chronic, the orthostatic component can become blurry over time. It's also possible to have both, as both POTS and spinal CSF leaks are associated with connective tissue disorders such as EDS too, although from what I've seen via a US expert neurologist only around 4% of people who present with one actually have both. It is possible to determine if it's POTS or a spontaneous spinal CSF leak by closely looking at the story behind the symptoms, and also via the use of imaging. Although, it should be mentioned that there is not a 100% sensitive test for leaks unfortunately, and some tests can be very invasive and even cause a leak despite looking for one, so only people with a good story for a leak should have such tests. With that said, a contrast enhanced brain MRI does show an abnormality via the SEEPS criteria 75-80% of the time providing it's read by an expert who is familiar with the criteria for spinal CSF leaks aka intracranial hypotension, if such an abnormality exists then investigation or treatment is warranted. There has also been an uptick in POTS as it seems that some long Covid patients develop it, which isn't surprising as viruses are known to trigger POTS, amongst other things. POTS can improve over time but tends to be a learn to cope condition using meds and lifestyle adjustments. A spontaneous CSF leak can be a nightmare to diagnose and treat in some cases, but it is technically fixable most of the time.
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I got an attack that lasted 2:30 hours... It wasn't like a gradual thing, it was just a constant, hard-hitting attack that made me unable to breathe. Lost all limb functions and basically turned into a noodle, without any blood flow in my arms and legs. I developed heavy shakes. I couldn't talk for an hour and a half at all. The rest of the time I slurred and stuttered through gasps. Aaaand I'm still unsure if that's how long an episode should actually last.... My episodes are usually anything from 15 to 40 minutes long, but this one left me with a permanent chest pain after it had happened. Should I see another cardiologist ? Mine refused to even give me a jelly test because of there being too many people in the hospital.
I get exactly what you described! My attacks last 15 minutes to 1.5 hours. I'm usually extremely weak and exhausted afterwards, and bedridden for a day or so. My husband has to help me the couple steps to the bathroom, and I struggle to even type on my phone. Reading or crocheting are also impossible at first.
I wouldnt bother seeing anyone about it,just have to work with it and deal with it.i dealt with it for months but it finally let up and now the symptoms are about every 3 weeks and its very minor now. Keep workin at it,it can be managed
I think I might have POTS. When I was younger, my mom told me that when she was younger she had what she called heat stroke where in the sun for too long she would get dizzy and faint. And I had similar symptoms, so I just assumed that’s what I had and avoided direct sun contact for long periods of time. Then, as I got older, I started to avoid doing anything too strenuous because I would feel dizzy but then I would just chalk it up to me being overweight and being lazy because that’s what Ppl told me I was so I assumed I was. Then one day I was 100 pounds down because I just lost a lot of weight and all I went to the dentist and I had just gotten a root canal done. And I had left the clinic and called my mother and said hey are you going to be here soon and she said give me 15 minutes. So I said OK no problem. I started standing outside of the building for 15 minutes and at first I started getting dizzy and a little nauseous so I started to lean on a railing but that didn’t do anything for me. I just kept getting sicker and sicker so I called my mother and I was like hey are you any closer and she’s like I’m trying there’s traffic and I said OK sorry I’m just not feeling good and I kind of feel like I need to sit down but I’ll just wait don’t worry. Just hurry up if you can. And so I waited and waited and it got worse and worse, and, luckily as she was pulling up, my vision started to black out and I couldn’t really think anymore and only by sheer luck that when I grab the door knob to the car and I sat down all of the feelings didn’t disappear, but it definitely started to go away and I was normal again maybe 10 minutes later. And that’s the first time I was like this isn’t heat stroke because I wasn’t hot. Actually, I was rather cold since it was cold outside. And it’s not because I’m being lazy because I’ve lost a bunch of weight and standing for 15 minutes shouldn’t be strenuous. At that point I was like there’s definitely something wrong and it’s not just what I was falsely diagnosed with by my mother. So I started looking into other things just listing my symptoms on Google and seeing if anything correlated. And I did see POTS early on, but I had heard about this before and I was like no that’s not me. But as I do more research, it seems like it’s most definitely my problem. Because I ignore some of the symptoms because I think it’s normal and I’m starting to realize that it’s not. Apparently when you get up from laying down, you shouldn’t get dizzy. I thought that was just a thing that everyone had happened to them. Apparently excessively sweating is also a symptom which I’ve had for my whole life and I didn’t know that was something wrong I thought I was just overweight.
Working on having an autoimmune disorder diagnosed.. I was told today along the journey that I have this. I feel crappy constantly but if im in bed chilling its not as bad. One more complication for me. 😢
Before I was diagnosed, I'd have heart palpitations lasting for weeks to a month at a time. Got told it was anxiety but like how am I only getting anxiety when standing?!?!
I dont have POTS. I watched in youtube. Is any of the POTS patients had vitamin B12 deficiency . Is any of the POTS patients had HPV vaccine (Gardasil/Cervarix) when they are younger.
Basically it was rediscovered in about the 80s 90s, with the invention of the tilt table test. It was in the medical journals of war physicians in previous wars, but didn't show up on any tests. When a disease is discovered, it takes around 20-30 years to appear in the text books, and another 20-30 years before it is common knowledge amongst doctors. So this will become more commonly known in around 2040-2050. The doctors who do know about this disease are typically ones who have stumbled upon recent publications.
It’s pressure in the forehead like low blood pressure that I keep getting and mental exhaustion. I have ADD and never taken anything for it. It’s a weird combination. My lists of things to do overwhelm. Decision making is not good, either. Taking initiative is always a problem like a inner fight with me. The feeling makes me even more mentally fatigued.
but is it okay if we do have it? It’s not fatal or dangerous right? ( trying to help my anxiety and rule out the fact that if I do have it that I’ll be fine ) 😂
It isn't fatal, as far as I've read and studied. Look up Aimee Esther's course on managing your brain/thoughts while living with chronic illness. She also has a You Tube channel. She has POTS and several other chronic illnesses, and is a life coach. She has helped me amazingly!! It is possible to live a happy life even with POTS. Also, Mindfully Evie's books (on Amazon) have been a huge help to me. 😊
My y neurologist told me when I was diagnosed it’s not fatal itself but if you happen to pass out while standing and hit your head etc you can get injured
I used to faint a lot. Vision would go blury and I would All Ways pass out. It happened when I got arrested, when I was in a cell I got up to press the buzzer and next thing I knew the cell door was open and a police officer looking down at me. They took me to see the Doctor inside the station and I swear to god he didnt have a clue what was wrong with me. All he said was I have an old persons heart????? Can u tell me what this means? I was about 20 when this happened. Im now 24
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You can kinda diagnose yourself with POTS. Look up the huge list of symptoms. Get a finger monitor and watch your heart rate when you lay down, sit up, walk and stand still. Mine bounces up and down constantly. If you don’t have things like brain fog, inability to speak, can’t regulate body temp, legs hurt (blood pooling), and you feel like you need a nap after a shower… you might want to look into blood sugar issues, and see a doctor.
@@kylieshaye6562 I’m not a doctor, just really chatty sometimes. 😬 No, I don’t have issues every time I stand. Since I wrote that the Lord has so graciously healed me a little. For example the morning used to be the worst; trip, tingly head and want to vomit. If your adrenaline glands are forced to fire, then it can cause an episode. For example, a dog runs out in the road and you have to slam your breaks and swerve. That used make me have a bad episode an hour later and wake up the next day a couple hours later than normal. Obviously you may have a much milder case of POTS, so you might be just dizzy a few hours later. Every time you have an episode, think back through your day and even the previous day; were you under stress, were you really angry, or did you eat/drink something that lowers blood pressure? You should be able to pinpoint the cause just about every time. A couple months ago I was drinking pumpkin spice coffee, with real ginger, all of a sudden I was dizzy and couldn’t breathe well. 😆 I know better but.. 🤷🏼♀️ Things that reverse POTS effects are laughing, happiness, walks outside, and exercise.
im 4 months pregnant and ive had the last couple of weeks off work due to dizziness, fatigue, nausea and ive had a few recent episodes of passing out and aparently losing colour in my face. i looked like a ghost according to my boss. ive been to the doctors and they have found white blood cells in my urine and they dont know whats potentially causing me to have a UTI. they said my blood pressure was low but not enough for concern then they tested me stood up and nothing happened. its like he expected a massive change right there and then but it hits throughout the day whenever. I get dizzy spells just standing up and my heart pounds really fast and i have horrendous tremours, sometimes when im in the shower i have to quickly get out when i feel lightheaded. (i dont have hot showers so i know it isnt that), and even doing my makeup or standing at the bus stop triggers those feelings. i just want answers. my job as a factory worker is extremely exhausting and im not allowed to sit down when i need to because chairs arent allowed in the factory. im off to the doctors tomorrow to see if they think its POTS but as far as work is concerned i dont know what to do. i cant change jobs because then ill lose my maternity.
If you have pots, do you have symptoms every time you stand up? Or do you only get symptoms of lightheadedness sometimes upon standing? I think I have pots but i only have symptoms in episodes, not every day. I'm really trying to find answers from people who are knowledgeable about pots.
Is it normal for anyone to have a dizzy spell when standing up too fast? It's common for me to have dizzy spells when getting out of a seated position my doctor reckons I was having a tia I was spinning out standing in one spot for too long and spinning out putting the lead on the dog.
My pots is caused by tick diseases and mold toxicities I've had for yrs, these turn into nuerological problems and pots and these symptoms are hell to live with, I can't do anything, but conventional drs just play the anxiety depression card and these are just a 16th of the problem. There are many symptoms that cause anxiety and anxiety is not just the stand alone only diagnoses. Keep track of your medical records because drs like to avoid what the tests revealed.
Does anyone get angina like pain with this I'm a long covid sufferer for 2 years and been getting a lot of chest pain. Been to hospital twice and they couldn't find anything.
I had chest pains for abit but that was long time dissapeared. My biggest symptom now is probably just abit of nausea and light headness but thats it and its rare now i get anything after a year of dealing with it
My heart rate gose up 120+when i stand but for some second then its came down.105 to 99. I dont feel other symptoms. Some time its Doesn't go up to 111 when i stand.iam 18 years old
Hello, thanks for contacting us. We inform you that this is not the direct channel of the doctor. To resolve your doubts, we recommend you to get directly in touch with Dr Alessandro Giardini, by clicking on the following link: www.topdoctors.co.uk/doctor/alessandro-giardini. You can contact him by phone or you can request an appointment through the online agenda. Do not hesitate to contact us in case of further requests. Hope you get well soon!
i think i have this i went to the er for a near fainting spell & they said dehydration but its been a few days & i feel that lightheadedness & all ughhh why why why
It depends. Some people respond well to beta blockers (generally used to treat hypertension/high blood pressure) and compression stockings (which makes it easier for blood to return back to the heart). But unfortunately, a lot of times POTS patients are simply told to “drink lots of water and increase salt intake”. Along with tachycardia (high heart rate), POTS patients will frequently experience hypotension (low blood pressure) as well. The HR goes up, the BP goes down, and your body does NOT like that. Lol! Increasing fluid and salt intake is supposed to help by increasing the blood pressure and preventing syncope (or ‘passing out’) due to low BP, but usually does very little to decrease HR. It’s very frustrating when the options for treatment are so limited.
They can't really treat it. You can treat the effects but not the illness. It either goes away on its own or you stay with it for the rest of your life
@@musicluver2410 but is it okay if we do have it? It’s not fatal or dangerous right? ( trying to help my anxiety and rule out the fact that if I do have it that I’ll be fine ) 😂
@@musicluver2410 POTS is due to blood veins are not stiff enough to pump up blood to brain. I heard people taking salt and more water so veins can pump more blood by increasing blood volume. Some tried taking licorice roots powder daily so licorice roots can increase blood pressure by making blood vessel stiff. Licorice roots may reduce potassium and some tried to increase the potassium by drinking coconut water ( dont take from packed bottle or carton they contain preservatives) daily. I am not a doctor. It is a suggestion.
@@musicluver2410 POTS is due to blood veins are not stiff enough to pump up blood to brain. I heard people taking salt and more water so veins can pump more blood by increasing blood volume. Some tried taking licorice roots powder daily so licorice roots can increase blood pressure by making blood vessel stiff. Licorice roots may reduce potassium and some tried to increase the potassium by drinking coconut water ( dont take from packed bottle or carton they contain preservatives) daily. I am not a doctor. It is a suggestion.
As someone with pots I can say that not all symptoms go away by just laying down there are a lot of symptoms associated with pots not just tachycardia and being tired
Agree 👏🏼👏🏼👏🏼
So many times people have said take a couple of paracetamol or a lemsip and have an early night. You’ll be fine by morning! I have a few of the usual comorbidities that go with too, so I take morphine for Ed’s. So sometimes I’ve just said I don’t take paracetamol because I have two kinds of morphine…the look on people’s faces 😂 I’m not bothered if it’s a stranger, but when it’s family or people I’ve known a long time it’s irritating! A few weeks ago an aunt recently diagnosed with fibromyalgia 🙄 said you should take some amitriptyline, I’m on 10 mg…my reply ‘I take 150mg’ which is correct. Then she said I must have fibromyalgia like her…nope, was misdiagnosed with that years ago. It’s EDS, POTS etc. you ought to try co codamol for pain because she has it and she’s not in pain anymore!
To have a pain free day is a dream! So I reeled off my medications…😤 she can be bloody annoying! X
Agreed 👏👏👏 can be quite painful and disorienting I had my heart rate hit 180 during a flare up, took me 2-3 days to recover
I feel like an elephant is setting on my chest when I lay down. I have used a CPAP for nearly 15 years due to sleep apnea. I swear when I lay down it sounds like I’m hearing drums in the attic…but it’s not just at home…it’s anywhere. But back to the laying down and even feeling like someone invisible is choking me around my throat. I am 48 but experienced this 1st when I was 15…I was awake and laying on the couch and couldn’t scream or call for help…it stopped as soon as I finally could push air they my throat again. Felt like it lasted a good 30 seconds. Scared the living shit out of me! Had a scope a week ago and found inflammation in my throat (all over actually) and gut is basically leaky and pockets of diverticulosis. Said I have allergy to nuts and shellfish and is causing the swelling in my throat. Been eating all kinds of nuts and shrimp trying to be healthier lol. Damn 😂😩
Correct. I just got out of the Cardiac ICU after 8 days with this condition. I had my heart shocked twice and about 6 different iv drips. It's a horrible problem.
I was diagnosed with this after having COVID. Never had any issues until a few months ago and now I struggle to do daily activities. I haven’t been able to work and can’t afford medical bills as a result. I’m not convinced it’s just pots because of videos like this that state you just get dizzy when you stand up. I have an overload of symptoms out of the blue. Standing, sitting, laying, sleeping… it doesn’t matter what I do. Nausea, palpations, chest pain, shortness of breath, cold sweats, numbness/pens and needles, clammy/pale skin, tremors, partial loss of vision, incontinence, with a great sense of impending doom. I just have to let it run it’s course and hope for the best. It’s a terrible way to live. I’m hoping for a misdiagnoses because there isn’t any cure for POTS. My heart goes out to everyone that has to deal with this. I pray for you.
Did you ever get answers? I’m currently going through the same thing. It’s horrible. Everything you said is exactly what I’m going through, I can’t live my normal life.. my doctor said I had low B 12, and folic acid so I started taking B 12 and folate supplements, but I continue to take it and my blood work returns to normal but I’m still feeling horrible. I had Covid in March of 2020, and this started happening in April 2021.
Have you looked into it being lyme disease? Hope yall get better :(
@@JadedFossil91 same here brother b12 anD vitamin D are low and i get tested and everything is normal but still dealing with pots .
@@PokeBrokeX I'm still about the same. I went to get a chest ct for shortness of breath, and turns out I had/have bacterial pneumonia. Which after antibiotic and steroids still has not gone away. 6 months after diagnosis.
Sounds totally like POTS. I have the same symptoms. Some people have just a few symptoms, others like me and you have a lot more. Some people are able to live a more normal life, some are completely bed bound. I'm somewhere in the middle.
This is a huge issue within the medical community because all drs associate POTS with is this little tiny box of symptoms. There are so many other issues even such as having severe palpitations, weakness, fatigue just caused by eating. What you are describing isn’t a POTS attack, it is way less than even a general day in the life of a POTS patient.
There are 100 identified symptoms.
Anybody get this immense pressure in their head when dealing with this, was diagnosed with POTS and I have all of the normal symptoms everyone has described here, but I also get this immense inter cranial pressure in my head, sinuses, temples, ears, etc. Best way to describe it, is that it feels like someone put a balloon in my head and is inflating it. Majority of my symptoms die down when I finally can lay down. I’ve been dealing with this problem for over a month now and it’s effecting my new job, any social life I have, and just pretty much kept me in the house. I don’t wish this on anyone… truly anyone
Yes I do!!!!! Has anything helped you??
as do as well how are you feeling now ? I have the same things you just described .
@@PokeBrokeX I’m doing a lot better (knock on wood). Then again I am taking loads of meds now. I’m on Propranolol, Sumatriptan as needed, Clonazepam twice a day, Magnesium, Vitamin E. So yeah, lots of stuff. But luckily the pressure in the head went away, the doctors believe it was associated with a very severe migraine that just continuously got worse and worse, and the sudden bouts of tachycardia didn’t help. I still get heart palpitations here and there and bouts of dizziness, but I’m doing much much better than I was. There were days I couldn’t get out of bed. And I’m 23 years old and workout everyday and have a physically demanding job, it was rough.
I also get the pressure in my head. Sometimes it lasts for days.
Not a doctor, but fellow POTSie here...it may be intercranial hypertension...you should definitely discuss with your doctor!!
An E.R doctor recently diagnosed me with having ‘panic attacks’. But I’ve been looking around seeking for knowledge about the symptoms, and the more I searched the more my diagnosis points towards POTS! I’ve heard that lots of people get misdiagnosed and it takes years for doctors to realize that someone actually has POTS instead of some kind of panic disorder. I hope I can get to the bottom of this soon.. the symptoms can be exhausting!
Hi, I have just been diagnosed with POTS, took a year and a half for a diagnosis. But when I had what you might call a bad POTs period I describe it to me GP and work manager as it's like your having a panic attack (body shaking heart racing, possible hyperventilating) but my brain is complete calm (except for wondering why my body is doing this). I did not know what POTs was at this stage. But I did know my GP did think it was a bit weird and kept asking am I stressed or anxious. But he was a good doctor and managed to eventually set me up with lot of tests and my heart rate was always high when I went to see him. I hope you get the diagnosis you need soon. I think its a bit silly telling someone they have anxiety or depression if they tell you there fine in the brain (if you get what I mean). If you have depression your gonna know about it. (As that's kinda what happened with me, but people may have depression and anxiety on top of POTs, this is just what I experienced)
Did you get it figured out? Cuz SAME. After I had my daughter in December my heart rate spikes everytime I'm standing and I get dizzy. My feet turn purple when I stand/ shower and I feel so short of breath/ chest pain/ palpitations. It freaking SUCKS! it's more than anxiety... a cardiologist looked at me and said "you're tests are normal its not your heart" after doing 1 ecg and bloodwork. Thankfully I found a good doctor who is taking me seriously. I will find out next Thursday.
My doctor also told me that it's just panic attacks so i took anxiety meds and it did not work. I'm now researching about pots all my symptoms point to it.
@@Sam-pg9hr Turns out I was extremely anaemic! The stupid ER doctors didn’t do any blood work to check my haemoglobin levels. I finally got my doctor to look into it. The racing heart, the dizziness and fatigue were all from it. I’m on high doses of iron for the past month and my symptoms have improved a lot! Hope you guys can get properly diagnosed so you can start feeling better!
Soooooo frustrating that PoTS is diagnosed as anxiety! I’m a pretty relaxed person with zero anxiety issues so why does my pulse go up to 135+ and blood pressure stay normal and unaffected when I’m standing but pulse will immediately go back down to 65-80 when I lay down?!?! Am I a fucking magician 🤣🤣🤣
This account of symptoms is massively sugar coated, there are loads more very common issues which are not mentioned & people get symptoms sitting down as well a lot of the time
Is any of the POTS patients had vitamin B12 deficiency . Is any of the POTS patients had HPV vaccine (Gardasil/Cervarix) when they are younger.
@Isabella Ethen Thank You for your reply.
I have POTS and Celiac , I have had the attacks awaken me during sleep 💤😴 and keep me up for hours ,not dare get up or else wake up on the floor after a the crash. I have B12 deficiency.
@Isabella Ethen Japan and India has banned HPV vaccines based on the pots, side effects and symptoms of the hpv vaccinated girls in those countries . May be HPV vaccine works only for some ethnicity and not for others.
@@cnance1972 There are two types of B12. All say vegetarians have B12 deficiency . There are people who eat and animals which eat only meat also have B12 deficiency. The issue is absorbtion of B12 vitamin if you consume. Unless gastro is good B12 cant be absorbs even if we eat more B12 vitamin food/meat. I am a layman . It is a suggestion.
I have EDS a connective tissue disorder which gives me POTS my autonomic system has failed I also have MCAS mast cell activation syndrome , I have been collapsing since the 80s lol I’m 50 now and I find breathing exercises daily helps pots and leg stockings and I also have a light exercise bike that I can use sitting down in a chair it just cycles your legs but slowly makes them stronger and that helps my POTS .... no matter what our reasons for having it it’s a right pain in the bum ..God bless you all hope this helps ...
I'm so tired of having to live with this. It's been 8 years and i'm only 19, I can't find the energy to do basic things anymore 😕
My heart rate goes up when I stand up and goes down when I lay down .I think I have pots.
It's also associated with spontaneous spinal CSF leaks, the most overlooked association. In a study I read, 100% of people with spontaneous CSF leaks met the criteria for POTS, even if not all people with POTS had a CSF leak obviously. It's very important to pay attention to the story behind the symptoms. If it's related to any sort of physical spinal trauma, even if mild, or if a big feature of it is a positional headache that gets worse when up and goes away when laying flat, a person should be worked up for a CSF leak with imaging and/or trial a blood patch.
What is csf leaks?
@@mikelbrenn111 A leak of CSF through a tear or hole in the dura, or via rogue vein called a venous fistula sometimes. It can occur in the cranium but I was only referring to spine based leaks, as cranial leaks do not cause the same symptoms as spinal leaks.
The main symptoms will be orthostatic, much like POTS, and there is a significant overlap in clinical symptoms. Usually a CSF leak will include a headache (and other neurological symptoms) that go away when laying flat but come on when upright, sometimes not immediately if the leak is slow, sometimes it can be made worse by a valsalva maneuver too. Usually the positional element is clear in the beginning, but if the leak becomes chronic, the orthostatic component can become blurry over time. It's also possible to have both, as both POTS and spinal CSF leaks are associated with connective tissue disorders such as EDS too, although from what I've seen via a US expert neurologist only around 4% of people who present with one actually have both. It is possible to determine if it's POTS or a spontaneous spinal CSF leak by closely looking at the story behind the symptoms, and also via the use of imaging. Although, it should be mentioned that there is not a 100% sensitive test for leaks unfortunately, and some tests can be very invasive and even cause a leak despite looking for one, so only people with a good story for a leak should have such tests. With that said, a contrast enhanced brain MRI does show an abnormality via the SEEPS criteria 75-80% of the time providing it's read by an expert who is familiar with the criteria for spinal CSF leaks aka intracranial hypotension, if such an abnormality exists then investigation or treatment is warranted. There has also been an uptick in POTS as it seems that some long Covid patients develop it, which isn't surprising as viruses are known to trigger POTS, amongst other things. POTS can improve over time but tends to be a learn to cope condition using meds and lifestyle adjustments. A spontaneous CSF leak can be a nightmare to diagnose and treat in some cases, but it is technically fixable most of the time.
Csf means cerebral spinal fluid. You're welcome.
Csf means cerebral spinal fluid. You're welcome.
Csf means cerebral spinal fluid. You're welcome.
Literally what I've told my doctors....and so far I've just been told I'm lazy and fat
Good morning Paula, thanks for contacting us. If you'd like to receive a second medical opinion, we recommend you to get directly in touch with Dr Alessandro Giardini by clicking on the following link: www.topdoctors.co.uk/doctor/alessandro-giardini. You can contact him by phone or you can request an appointment through the online agenda. Do not hesitate to contact us in case of further requests. Have a good day!
Have you gotten any help yet? Any diagnosis?
I got an attack that lasted 2:30 hours...
It wasn't like a gradual thing, it was just a constant, hard-hitting attack that made me unable to breathe.
Lost all limb functions and basically turned into a noodle, without any blood flow in my arms and legs.
I developed heavy shakes.
I couldn't talk for an hour and a half at all.
The rest of the time I slurred and stuttered through gasps.
Aaaand I'm still unsure if that's how long an episode should actually last....
My episodes are usually anything from 15 to 40 minutes long, but this one left me with a permanent chest pain after it had happened.
Should I see another cardiologist ?
Mine refused to even give me a jelly test because of there being too many people in the hospital.
I get exactly what you described! My attacks last 15 minutes to 1.5 hours. I'm usually extremely weak and exhausted afterwards, and bedridden for a day or so. My husband has to help me the couple steps to the bathroom, and I struggle to even type on my phone. Reading or crocheting are also impossible at first.
Yeah I’ve been there multiple times :( I’m so sorry you’ve had to deal with this too
Wow how are u now 1 year later
I wouldnt bother seeing anyone about it,just have to work with it and deal with it.i dealt with it for months but it finally let up and now the symptoms are about every 3 weeks and its very minor now.
Keep workin at it,it can be managed
I think I might have POTS. When I was younger, my mom told me that when she was younger she had what she called heat stroke where in the sun for too long she would get dizzy and faint. And I had similar symptoms, so I just assumed that’s what I had and avoided direct sun contact for long periods of time. Then, as I got older, I started to avoid doing anything too strenuous because I would feel dizzy but then I would just chalk it up to me being overweight and being lazy because that’s what Ppl told me I was so I assumed I was. Then one day I was 100 pounds down because I just lost a lot of weight and all I went to the dentist and I had just gotten a root canal done. And I had left the clinic and called my mother and said hey are you going to be here soon and she said give me 15 minutes. So I said OK no problem. I started standing outside of the building for 15 minutes and at first I started getting dizzy and a little nauseous so I started to lean on a railing but that didn’t do anything for me. I just kept getting sicker and sicker so I called my mother and I was like hey are you any closer and she’s like I’m trying there’s traffic and I said OK sorry I’m just not feeling good and I kind of feel like I need to sit down but I’ll just wait don’t worry. Just hurry up if you can. And so I waited and waited and it got worse and worse, and, luckily as she was pulling up, my vision started to black out and I couldn’t really think anymore and only by sheer luck that when I grab the door knob to the car and I sat down all of the feelings didn’t disappear, but it definitely started to go away and I was normal again maybe 10 minutes later. And that’s the first time I was like this isn’t heat stroke because I wasn’t hot. Actually, I was rather cold since it was cold outside. And it’s not because I’m being lazy because I’ve lost a bunch of weight and standing for 15 minutes shouldn’t be strenuous. At that point I was like there’s definitely something wrong and it’s not just what I was falsely diagnosed with by my mother. So I started looking into other things just listing my symptoms on Google and seeing if anything correlated. And I did see POTS early on, but I had heard about this before and I was like no that’s not me. But as I do more research, it seems like it’s most definitely my problem. Because I ignore some of the symptoms because I think it’s normal and I’m starting to realize that it’s not. Apparently when you get up from laying down, you shouldn’t get dizzy. I thought that was just a thing that everyone had happened to them. Apparently excessively sweating is also a symptom which I’ve had for my whole life and I didn’t know that was something wrong I thought I was just overweight.
Working on having an autoimmune disorder diagnosed.. I was told today along the journey that I have this. I feel crappy constantly but if im in bed chilling its not as bad. One more complication for me. 😢
thanks for the wonderful information... best!
Before I was diagnosed, I'd have heart palpitations lasting for weeks to a month at a time. Got told it was anxiety but like how am I only getting anxiety when standing?!?!
Bro I got told the same thing I've even been put on meds😖
@@Mary-Anne0 Medical gaslighting at it's finest 👌
There's a lot of people out there that claim they have POTS and that doctors KNOW nothing about this medical issue. How true is this?
I dont have POTS. I watched in youtube. Is any of the POTS patients had vitamin B12 deficiency . Is any of the POTS patients had HPV vaccine (Gardasil/Cervarix) when they are younger.
Basically it was rediscovered in about the 80s 90s, with the invention of the tilt table test. It was in the medical journals of war physicians in previous wars, but didn't show up on any tests.
When a disease is discovered, it takes around 20-30 years to appear in the text books, and another 20-30 years before it is common knowledge amongst doctors. So this will become more commonly known in around 2040-2050.
The doctors who do know about this disease are typically ones who have stumbled upon recent publications.
It was the opposite for me. I had no idea POTs exist and then got diagnosed with it. And was like well what this. So looked it up and made sense
If doctors don't have the therapeutics/medicine for any medical issue , they call the medical issue as syndrome.
@@sparklingmoota4568 me too! Made lots more sense
Good book about POTS
POTS: What It Really Is & Why It Happens
By:Patrick Ussher
It’s pressure in the forehead like low blood pressure that I keep getting and mental exhaustion. I have ADD and never taken anything for it. It’s a weird combination. My lists of things to do overwhelm. Decision making is not good, either. Taking initiative is always a problem like a inner fight with me. The feeling makes me even more mentally fatigued.
but is it okay if we do have it? It’s not fatal or dangerous right? ( trying to help my anxiety and rule out the fact that if I do have it that I’ll be fine ) 😂
same here brother the anxiety this brings is unreal .
@@PokeBrokeX we woke up again keep pushing 🤝
It isn't fatal, as far as I've read and studied. Look up Aimee Esther's course on managing your brain/thoughts while living with chronic illness. She also has a You Tube channel. She has POTS and several other chronic illnesses, and is a life coach. She has helped me amazingly!! It is possible to live a happy life even with POTS. Also, Mindfully Evie's books (on Amazon) have been a huge help to me. 😊
My y neurologist told me when I was diagnosed it’s not fatal itself but if you happen to pass out while standing and hit your head etc you can get injured
Same. Im constantly worried ill pass out and leave my kids motherless.
I used to faint a lot. Vision would go blury and I would All Ways pass out. It happened when I got arrested, when I was in a cell I got up to press the buzzer and next thing I knew the cell door was open and a police officer looking down at me. They took me to see the Doctor inside the station and I swear to god he didnt have a clue what was wrong with me. All he said was I have an old persons heart????? Can u tell me what this means? I was about 20 when this happened. Im now 24
Hello, thanks for contacting us. We inform you that this is not the direct channel of the doctor. To resolve your doubts, we recommend you to get directly in touch with Dr Alessandro Giardini by clicking on the following link: www.topdoctors.co.uk/doctor/alessandro-giardini. You can contact him by phone or you can request an appointment through the online agenda. Do not hesitate to contact us in case of further requests. Have a good day!
You can kinda diagnose yourself with POTS. Look up the huge list of symptoms. Get a finger monitor and watch your heart rate when you lay down, sit up, walk and stand still. Mine bounces up and down constantly.
If you don’t have things like brain fog, inability to speak, can’t regulate body temp, legs hurt (blood pooling), and you feel like you need a nap after a shower… you might want to look into blood sugar issues, and see a doctor.
@@KristiTalk is it pots if you don't get symptoms every time you stand? I get symptoms in episodes, one week with symptoms and a few days without.
@@kylieshaye6562 I’m not a doctor, just really chatty sometimes. 😬 No, I don’t have issues every time I stand. Since I wrote that the Lord has so graciously healed me a little. For example the morning used to be the worst; trip, tingly head and want to vomit. If your adrenaline glands are forced to fire, then it can cause an episode. For example, a dog runs out in the road and you have to slam your breaks and swerve. That used make me have a bad episode an hour later and wake up the next day a couple hours later than normal. Obviously you may have a much milder case of POTS, so you might be just dizzy a few hours later. Every time you have an episode, think back through your day and even the previous day; were you under stress, were you really angry, or did you eat/drink something that lowers blood pressure? You should be able to pinpoint the cause just about every time. A couple months ago I was drinking pumpkin spice coffee, with real ginger, all of a sudden I was dizzy and couldn’t breathe well. 😆 I know better but.. 🤷🏼♀️ Things that reverse POTS effects are laughing, happiness, walks outside, and exercise.
im 4 months pregnant and ive had the last couple of weeks off work due to dizziness, fatigue, nausea and ive had a few recent episodes of passing out and aparently losing colour in my face. i looked like a ghost according to my boss. ive been to the doctors and they have found white blood cells in my urine and they dont know whats potentially causing me to have a UTI. they said my blood pressure was low but not enough for concern then they tested me stood up and nothing happened. its like he expected a massive change right there and then but it hits throughout the day whenever. I get dizzy spells just standing up and my heart pounds really fast and i have horrendous tremours, sometimes when im in the shower i have to quickly get out when i feel lightheaded. (i dont have hot showers so i know it isnt that), and even doing my makeup or standing at the bus stop triggers those feelings. i just want answers. my job as a factory worker is extremely exhausting and im not allowed to sit down when i need to because chairs arent allowed in the factory. im off to the doctors tomorrow to see if they think its POTS but as far as work is concerned i dont know what to do. i cant change jobs because then ill lose my maternity.
i have everything you just pretty much describe even the hot shower thing and getting out fast . has anything helped you so far ?
I’m 4 months pregnant and you just explained the same feelings I’m having to a T
If you have pots, do you have symptoms every time you stand up? Or do you only get symptoms of lightheadedness sometimes upon standing? I think I have pots but i only have symptoms in episodes, not every day. I'm really trying to find answers from people who are knowledgeable about pots.
Maybe it's a vitamin B1 deficiency
Omg, I feel like you're describing my life! Has anything changed for you in the past year?
Is it normal for anyone to have a dizzy spell when standing up too fast? It's common for me to have dizzy spells when getting out of a seated position my doctor reckons I was having a tia I was spinning out standing in one spot for too long and spinning out putting the lead on the dog.
Thank you
My pots is caused by tick diseases and mold toxicities I've had for yrs, these turn into nuerological problems and pots and these symptoms are hell to live with, I can't do anything, but conventional drs just play the anxiety depression card and these are just a 16th of the problem. There are many symptoms that cause anxiety and anxiety is not just the stand alone only diagnoses. Keep track of your medical records because drs like to avoid what the tests revealed.
Does anyone get angina like pain with this I'm a long covid sufferer for 2 years and been getting a lot of chest pain. Been to hospital twice and they couldn't find anything.
Get a ct angiogram and also an endopat test checks for endothelial dysfunction/microvascular disease
@@jamberry1135 listen in the UK you have to actually wait till the heart attack happens before they will do the tests you mention ffs.
I had chest pains for abit but that was long time dissapeared.
My biggest symptom now is probably just abit of nausea and light headness but thats it and its rare now i get anything after a year of dealing with it
I start seeing black and very light headed like I’m gonna pass out and I have to sit down or lay down for the blackness to go away
My heart rate gose up 120+when i stand but for some second then its came down.105 to 99. I dont feel other symptoms. Some time its Doesn't go up to 111 when i stand.iam 18 years old
Hello, thanks for contacting us. We inform you that this is not the direct channel of the doctor. To resolve your doubts, we recommend you to get directly in touch with Dr Alessandro Giardini, by clicking on the following link: www.topdoctors.co.uk/doctor/alessandro-giardini. You can contact him by phone or you can request an appointment through the online agenda. Do not hesitate to contact us in case of further requests. Hope you get well soon!
Me too, I don't feel like passing out every time I stand, it's about every other time. Not sure if this is pots.
Feels like I'm allergic to gravity straight up like shit tbh
I say the same about myself lol
i think i have this i went to the er for a near fainting spell & they said dehydration but its been a few days & i feel that lightheadedness & all ughhh why why why
Is it life threatening because pots is happening with me😢
How is it treated
It depends. Some people respond well to beta blockers (generally used to treat hypertension/high blood pressure) and compression stockings (which makes it easier for blood to return back to the heart). But unfortunately, a lot of times POTS patients are simply told to “drink lots of water and increase salt intake”. Along with tachycardia (high heart rate), POTS patients will frequently experience hypotension (low blood pressure) as well. The HR goes up, the BP goes down, and your body does NOT like that. Lol! Increasing fluid and salt intake is supposed to help by increasing the blood pressure and preventing syncope (or ‘passing out’) due to low BP, but usually does very little to decrease HR.
It’s very frustrating when the options for treatment are so limited.
They can't really treat it. You can treat the effects but not the illness. It either goes away on its own or you stay with it for the rest of your life
@@musicluver2410 but is it okay if we do have it? It’s not fatal or dangerous right? ( trying to help my anxiety and rule out the fact that if I do have it that I’ll be fine ) 😂
@@musicluver2410 POTS is due to blood veins are not stiff enough to pump up blood to brain. I heard people taking salt and more water so veins can pump more blood by increasing blood volume. Some tried taking licorice roots powder daily so licorice roots can increase blood pressure by making blood vessel stiff. Licorice roots may reduce potassium and some tried to increase the potassium by drinking coconut water ( dont take from packed bottle or carton they contain preservatives) daily. I am not a doctor. It is a suggestion.
@@musicluver2410 POTS is due to blood veins are not stiff enough to pump up blood to brain. I heard people taking salt and more water so veins can pump more blood by increasing blood volume. Some tried taking licorice roots powder daily so licorice roots can increase blood pressure by making blood vessel stiff. Licorice roots may reduce potassium and some tried to increase the potassium by drinking coconut water ( dont take from packed bottle or carton they contain preservatives) daily. I am not a doctor. It is a suggestion.
Wow-that was a waste of time
You have no idea 😂
Good book about POTS
POTS: What It Really Is & Why It Happens
By:Patrick Ussher