How I Got Diagnosed With POTS: My Story

How I got diagnosed with #pots syndrome: my story. #dysautonomia
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For this video I went into detail about how I got diagnosed with pots, and I shared my story. I talk about what POTS is, my experience with it, how I got diagnosed, all the tests I did, as well as my symptoms. I had so much fun making this video and I hope you enjoy!
Disclaimer: This is not a sponsored video. All opinions and actions are my own. I am obviously not a medical professional, which is why I wanted to include some Web MD information to ensure accuracy. This video is simply sharing my experience and story with you to hopefully help others out there who are going through the same thing.
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[@breannekuffner9948]

My first cardiologist laughed and told me it was anxiety and to stop wasting people's time. Sense then I have been diagnosed with pots. My symptoms started November 20th or 2017 and I finally got diagnosed with pots in January 31 2019. If you know there is something wrong dont let up! Fight for your diagnosis

[@jpmp7939]

That what me heart doc told me the sun makes it worst 157 just be walk 🤔🤔🤔

[@lexitalbert3003]

People told me that for 6 years! I finally got my diagnosis

[@wiktoriagwozdowska5484]

Exactly that’s what been happening to me for 1,5 years it’s horrible and really bad that all those doctors meant to help us but instead end up killing us :/ I’m not even yet diagnosed it might be I have pots or Multiple sclerosis but I asked my family to get private doctor we raised together 300 pounds I went to see neurologist paid 235 pounds for 30 min consultation and guess what straight away referral for mri scan of my head and tilt test which I begged my nhs doctors for over 1year I got no life and I’m just 22 I even didn’t have work yet or finish school because of this illness and every doctor been saying it’s stress the fact is they making us stress also stress can be a part of illness as a symptom and yet they don’t do nothing:/ I’m sick of them one woman doc said I should go out and count chimneys on my street to stop anxiety HOW I ASK HOW IF I’m freaking fainting all the time no understanding

[@SerndipityMind]

@@jpmp7939 I had a cardio proffesor telling me that! I finally got diagnosed by a god send doctor while he gave me my second tilt table test

[@philiplaw5789]

I am Dr.oguku I use herbs and roots to cure different diseases. I also specialize im curing different ailments like 1. HIV / AIDS 2. Infertility in male and female 3. CANCER 4. ALS 5. HEPATITIS A&B 6. DIABETES 7. HUMAN PAPILOMA VIRUS DISEASE (HPV) 8. ALZHEIMER 9. LUPUS (Lupus Vulgaris or Lupus Erythematosus) 10. FIBROIDS 11. PROSTRATE ENLARGEMENT 12. QUICK EJACULATION AND WEAK ERECTION 13. ANEMIA 14. HIGH BLOOD PRESSURE 15. ASTHMA 16. PNEUMONIA All kind of disease Call / whatapp: [phone]

[@aedwards7730]

Your blood pressure does not have to drop to have pots by the way, you can pass out due to your heart beating so fast it’s not pumping blood properly to the other parts of your body.

[@abbeydawn6678]

A Edwards AMEN, I have pots and I’ve never passed out

[@amberosburn2941]

True

[@als2480]

@@abbeydawn6678 So lucky I am getting tested and I've passed out 6 times today... Yesterday twice, and 5x the two days prior

[@roblaa3198]

hyper pots is much rare instead of low blood pressure you get high blood pressure hypertension

[@philiplaw5789]

I am Dr.oguku I use herbs and roots to cure different diseases. I also specialize im curing different ailments like 1. HIV / AIDS 2. Infertility in male and female 3. CANCER 4. ALS 5. HEPATITIS A&B 6. DIABETES 7. HUMAN PAPILOMA VIRUS DISEASE (HPV) 8. ALZHEIMER 9. LUPUS (Lupus Vulgaris or Lupus Erythematosus) 10. FIBROIDS 11. PROSTRATE ENLARGEMENT 12. QUICK EJACULATION AND WEAK ERECTION 13. ANEMIA 14. HIGH BLOOD PRESSURE 15. ASTHMA 16. PNEUMONIA All kind of disease Call / whatapp: [phone]

[@ameliagardner6230]

Compression socks are a life saver! They raise blood pressure so when you stand up the blood pooling is less significant.

[@katiekame5538]

Hi Amelia Garden, I was just diagnosed with POT's about 6 months ago. Where did you get your compression stocking? Did your doctor size you or did the doctor tell you to go to a medical store that carries medical products?

[@ameliagardner6230]

@@katiekame5538 Hi Katie! You can ask your doctor to get fitted specifically for compression tights just for you (which is really time consuming and expensive and most likely they won’t even have that as an option) or you can get some that are meant for athletes (my favorite brand of athletic compression socks are “CEP compression socks” there are also medical grade compression socks that you can buy online. These are the best option (in my opinion) because you can specifically pick socks based on how

[@katiekame5538]

Thank you Amelia Gardner. 😊😊😊

[@anasierra313]

I feel like compression socks didn't do anything to me. Maybe I had the wrong size?

[@MEMyHookandICrochet]

@@katiekame5538 I like the ones that doc miller makes because they feel good, hold up well and most importantly - they're cute! ;-) amzn.to/2We9sDV

[@faithbeforefear924]

I'm seeing a cardiologist in a few weeks, definitely thinking I have POTS. When I go from sitting to standing my heart rate increases by at least 35 beats. I only feel better laying down and it's been really hard doing school and work like this. Thanks for sharing

[@Catlily5]

I feel better when I lay down too. I do everything I can in bed. Edit: I don't know if it is good to lay down so much.

[@mick7338]

Update? Did you had pots?

[@liles52000]

I wish to thank you for your testimony! I am a 61 yr old Male who is finally getting the help I need. You said yours started after a concussion. In 2007 I voluntary checked myself into a major hospital for shock treatment. I suffered from severe depression! I went through the treatment every Monday, Wednesday and Friday for a month, or 12 sessions! A month after I came home I started passing out. I had never done anything like that before! I have a new dr. I am now scheduled for a tilt table test. I can't wait! Since 2007 I have probably blacked out around 100 times. I never heard of POTS until 2 months ago. God Bless You and Good Luck!!!

[@allielocks9124]

I have POTS too I am 14 it took them 3 years to diagnose me. I love hearing your story we will not be ignored this is a real thing not our imagination!

[@Islaa247]

I'm trying to get diagnosed for POTS currently, medical gaslighting and negligence is absolutely real and I'm so sorry if it's happened to you. 🥺💖

[@Im_Bennythebooman]

Thanks for sharing your story !! I just found out I have POTS after 15 years of struggling with horrible symptoms and no explanation. Getting brushed off by doc after doc. I never blacked out so maybe that’s why. Thanks for posting and raising awareness !!!

[@rosemariealvarado9902]

Wow! I'm learning so much from all you younger ladies. I have had POTS since I was 10. Saturday will be my 71st birthday. I diagnosed myself in 2011 after meeting15 year old twin sisters with POTS. After looking up the symptoms on line I told my chiropractor I have 35 of 37 symptoms. He answered "that's definitive I believe you " Fortunately he knew me well. I had spent most of 17 nearly bedfast. After a series of detoxes, change of diet, lots pf chiropractic treatments and specific supplements I am now able to be my husband's full time caregiver afterhe had two debilitating strokes (from dehydration). When I am under too much stress POTS raises its head but back to lots of distilled water and Himalayan salt and snatching as many naps I am able to care for my dear friend and husband of 50 years. Be encouraged girls. There is hope. Check out Dr. Bergman on KZbin. I've learned sooo much from him .

[@suzihazlove4979]

Thank you so much you have me hope. I recently had stress and now have the tacy. Cardia. Before it was low heart rate and pressure. Now Its low or high pressure and high heartrate. It's scary at my age. Over 55. I've. Had CBS. Dysautonomia. Eds. For years. But tachycardia is new. Stay. And bless you're care to hubby.

[@soulpowerful]

I agree with your post. I too have had POTS since I was a teenager and I’m now 50.

[@claireee9231]

thank you for sharing your story. i just got diagnosed with severe pots this fall and i had to step away from school for a month. it is so important that you’re spreading awareness. stay strong :)

[@ChronicallyLindsay]

Thank you so much! It really is, spreading awareness is so important with syndromes like POTS especially because no one can really see them! Im sorry to hear, but you stay strong as well, sending love and well wishes your way

[@leightonsiegal8639]

I’ve been having pots symptoms for over a year now and am in the process of setting up appointments. This video was so incredibly helpful!

[@chinabrown3217]

You are so strong !! Blessings to you and your family ❤️ You will continue to grow and people will always attach to your beautiful soul.

[@ChronicallyLindsay]

Awe thank you so much that means the world!

[@deliasmom6059]

Going through the diagnosis right now. This is great to see what I will be expecting. Thanks for posting this

[@jl8805]

I'm getting to record my first POTS video. I just left the cardiologist office a few hours ago. This is the third video of POTS I've watched. Thanks for making this.

[@baileyb6022]

oh my goodness thank you so much for making this video. I am currently 2 months into figuring out what is “wrong” with me. All of my testing has been going the exact same way. They’re thinking it’s POTS. I was the exact same way. 18, healthy. Boom, passed out for no reason. This video is making me feel so much better about my process and what’s to come. All of this testing kind of makes you feel crazy. I know it may not seem like a whole lot from some random person commenting on your video but I just wanted to say thank you so much ♥️♥️

[@ChronicallyLindsay]

I totally know how you feel, the testing process was so stressful and frustrating especially since I hate seeing doctors, but having the diagnosis is definitely a relief! I am so glad that this video was able to help you and ease your mind a bit during your journey! Sending prayers and love your way!

[@oliviacorcoran316]

I just came across this video and you have educated me a ton! I haven’t been diagnosed but everything you’re saying sounds like what I have.

[@GoFishOffice]

Yes I have pots also. Thank you for this video, you did an excellent job explaining this true but invisible Illness that so many don't understand or believe unless they have it themselves. Thank you again, you're amazing ❤️🙂

[@Seemyshorts]

I finally got diagnosed with POTS, and my HR will skyrocket with ANY exertion. I'm sorry that you have this syndrome and I feel for you. I can't work, and have to take a break between making a peanut butter and jelly sandwich. It's bad! Thanks for doing this video and sharing this with us. I wish you the best.

[@stacyechelberger]

It’s great to see the diagnosis process taking less time than it used to be! It was an almost unheard of condition when I first started trying to figure out what was wrong with me. It took me 25 years of doctor after doctor. Awareness is beginning to pay off! My symptoms began as a small child, but I visited my first cardiologist in the mid 90’s.

[@maplelatte3366]

I'm still without a diagnosis after 25-30 years. Ok, I have plenty of diagnoses, but they're for anxiety, etc. I recently went to a younger, female doctor, thinking she might listen to me instead of declaring me a hysterical female. Yeah, she referred me to counseling. I've gone along with the "it's anxiety and you want to feel this way" thing all these years, despite knowing that there was no way I could CBT my way out of the terrifying palpitations that last for up to 12 hours every day or not being able to walk to the store without having to lie down on the ground (I walk along the river so I'm not collapsing in someone's yard) with sweat dripping off me. My fitness tracker shows my heart rate spiking upon standing, and hitting my "zone minutes goal" for the week by Monday morning, after doing absolutely nothing. I have specifically been asking my doctors about autonomic nervous system symptoms for years. So I decided to do some PoTS self-management techniques this week, like taking packets of salt/electrolyte drink mix. The palpitations stopped within minutes of taking the first one! I'm still not "legitimate," and now I have to find another doctor, since I'm not wasting my time with another one who thinks a therapist will understand and be able to treat a physical condition that actual doctors don't understand or acknowledge, but I'm finally on the right track. I have had so many lost opportunities (had to quit college) and have lost so many relationships (my family thinks I'm intentionally causing this and "won't act right"). I can do what I can on my own for now, and hope to find a healthcare provider who can work with me. I wish everyone else well on their journeys.

[@jackijaxter1272]

I just finally got diagnosed with POTS after four years. I was clueless about what was happening to my body. I fall back into my bed when I wake up in the morning. I passed out in school when getting up between classes. I starting getting the chest pains when I was 13. I'm glad I finally have an answer but it's still a struggle. I have school and two jobs and life just gets difficult and it's scary sometimes. Sometimes I wish everything could be normal, but being normal is boring haha. Hopefully life will get easier now knowing for sure why this is happening to me. And I'm ready to start this new journey lol. Thanks for the video hun.

[@LoveBambina]

I totally feel like I have this. Had my first cardio appt yesterday and they gave me a heart rate monitor to wear the next couple days. I feel so strongly that it’s Pots just sucks that I have to go thru all this testing. Thanks for an amazing informative video!

[@3145pontius]

I’ve had symptoms since probably 2014 and always dismissed it as me overheating or getting anxious or having headache problems. I am being tested soon for POTS as I literally stumbled upon it yesterday and was mind boggled at the symptoms I have experienced for so long never being attached to anything.

[@kc1800]

I was diagnosed borderline POTS from my table tilt because they couldn’t get my resting heart rate lower than 95. (Gotta love anxiety). When they tilted me I only went up 25bpm because I started so high. If you have anxiety, check your bpm at home when you wake up (laying), when you sit up, and when you stand. That, with the table tilt, was what got me the full diagnosis. Thank you Lindsey, these videos help me feel less alone 💙

[@Alex-yy3sk]

I think I have POTS... I'm extremely fatigued with tons of back and chest pain, and my heart rate goes from around 64 while laying to 111 while standing. I have anxiety and depression as well as brain fog and symptoms of amnesia. I need help, but everyone keeps telling me that it's nothing and I'm overreacting. Update 4 years later: So in my case, my symptoms don't come from POTS. I've been tested and I don't have it, but I have chronic fatigue as well as two types of amnesia which is why I have brain fog and memory problems. The increased heart rate is due to chronic atrial fibrilation (irregular heartbeat) which has damaged my heart and made it do some weird stuff. It took me tons of testing and gaslighting to get my diagnosis, and I'll have to do even more when I switch insurance soon. Don't give up and advocate for yourself, you'll get answers eventually

[@miranda0298]

Alec ._. do you feel dizzy or lightheaded? those were my first symptoms.

[@0keyd0kei]

I have similar symptoms, except for a while I almost faint after a shower and I’m nauseous, just to add.

[@rashaetaylor6914]

Thanks for sharing! My 13 year old has POTS and its always good hear about others with this syndrome.

[@robinwatson5697]

This is incredible, your video made me feel like you were reading my mind or something! I just got diagnosed with POTS today after my tilt table test and all i have been doing is researching and drinking water and eating lots of salt 😂 thank you so much for sharing your story, it has brought me feeling of joy and laughter and comfort knowing im on the right track and doing everything you have suggested.

[@owl2368]

Last year I was diagnosed with fibromyalgia, but there were a lot of symptoms they never addressed (dizziness/nausea/out of breath when standing, extremely high heart rate and so on) and listening to this video felt like listening to myself? I might try to bring this up to my doctor and get tested. Thank you for making this video

[@MrsPaigeH]

OwlLight same here. Got diagnosed with fibromyalgia but i suspect POTS so going to doctor tomorrow to push for some testing. I’ve tried to take supplements for a year now for the pain and even recently going gluten free but nothing is helping.

[@collegevloggerv6728]

Thank you for sharing my sister was diagnosed with this and I’ve been trying to find more awareness.

[@abbyfellows1716]

Oh my. So I just got out of the ER after 12 hours. I have a traumatic brain injury, and have had a few episodes of fainting and dizziness and everything. Two of the episodes happened in public, at my university, one being tonight. I'm getting a heart monitor on Tuesday, and a echocardiogram soon, because they think its POTS. Today at the ER, my heart rate went from 72 to 155 when I stood up from sitting. I decided to jump on KZbin right now, to see if anyone had posted about it. So thank you for this.

[@joanapplewhite7691]

Thanks Lindsay you have been extremely helpful cause what I went through last Wednesday sounds very much what caused me to visit the hospital. Nothing was wrong but the doctor told me to drink lots of water and take extra salt. Mist of the symptoms you mentioned I experienced. Please keep us up dated as you progress. I live in the Caribbean where one is not given enough information about ones condition but I ended up doingy own research on Google and this is how I can to the conclusion I may have POTS. Thank much much love as always.

[@nyuriheals]

Just finished this tilt table test (autonomic reflex screen). I feel like I ran a marathon so out of breath. My heart is tired. I wish I watched this before! I thought it wasn’t going to be an issue. OMG I feel like I got hit my a train I just got finished CRYING hysterically in pain and exhaustion... thank you!

[@iHeartPiMore]

Thanks for sharing this!! I got a really bad concussion where I was knocked out and am currently being tested for pots. My sister also has pots that was triggered by a neck injury, so I called my doctor. I have had an EKG and an echo. Both have been normal, and my blood was normal, too. This is validating. Thanks!

[@maddysassaman8074]

Ahh I’m going through this exact process right now, thank you for posting!!

[@haveahappymealjunk3483]

I've been dealing with this for almost 6 months now going back and forth with doctor visits, was in the hospital just today, currently wearing my heart monitor... Finally getting answers it's so difficult but I'm happy I finally can figure out ways to manage my pots.

[@livingwithhope235]

I have POTS too. I’m Sorry you went through that! It’s definitely a daily battle! ❤️🙏

[@melissahemphill5048]

Yes... officially diagnosed with POTS. I was told that I probably had it for a very long time. I just didn't realize it. Dealt with strange things through the years. But, after being diagnosed with a Pulmonary Embolism it came out in "BEAST MODE". Passing out and dizziness upon standing. At first thought to be orthostatic hypotension. Severe fatigue is so random. Good days and then really bad days. Increased my fluids.. now taking saltsticks Vitassium and wearing compression stockings. Still learning. Love your videos❤

[@tessendicott]

I'm really glad I watched this because my cardiologist's nurse forgot to put my chest monitor on yesterday!!

[@abbeydawn6678]

I HATE MORNINGS TOO AND NO MATTER HOW TIRED I AM I CANT FALL ASLEEP YOURE THE FIRSG PERSON IVE SEEN WITH THE MOST SIMILAR SYMPTOMS TO MINE!! I feel the same exact way. OH AND TRY TAKING A STIMULANT ON DAYS YOU NEED AN EXTRA BOOST vyvanse really helped me

[@demetriarogers6324]

Loved ur video very informative. I'm currently experiencing all the pots symptoms but waiting yo see a doctor to get diagnosed. I've already had to wear a heart monitor for 72 hours waiting on results but did have to press my symptoms button on it a few times for palpitations. Thank you for your video.

[@caitlinlittle7803]

I just got diagnosed with POTS it was so frustrating not knowing what was wrong. I kept trying to explain to everyone what i was feeling and why I couldn’t do everything that i used to. I can now finally tell others why i feel the way that I do and hopefully I’m on the way to learning how to manage it.

[@troublezmalone8591]

Everything you described, is what I am going through. I was thrown across a room when I was three years old by one Parent, and again when I was ten by the other, since then I have had symptoms. I didn't pass out very often when I was younger but the faster heart rate, feelings like I would pass out, and heat intolerance has always come and go. I've always had headaches. I have had multiple head injuries over the years and after an accident, it got much worse. Many doctors treat me weird because my heart rate goes up and I get antsy. They do not even know what Dysautonomia is. I finally got a woman to look it up. I was trying to see if she could help me. Their website even says they help people who have not been able to find an answer. She looked up Dysautonomia and told me that I should try in another state. It's hard enough going through the sickness, and exhaustion, but the dismissal and misunderstandings of professionals is really disheartening. I can literally go from being ok one day and then not ok for the next 2 to 21 days and it seems that no one understands. It's really hard to get things done too. I appreciate you making this video.

[@nessycupcakes1225]

Omg I never realized the connection between the pots and sweating heaps!!! This makes so much sense!!! I've always been super super sweaty (especially my hands?) Hahaha thank you for giving me answers I didn't know I needed 😭🤣

[@Dulcimerist]

Interestingly enough, the POTS medications Clonidine, Guanfacine, Atenolol, and Propranolol are often prescribed off-label to treat excessive sweating, night sweats, and hot flashes.

[@candidawojcik6356]

I was in the ER recently because of passing out. The doctor there said he thought I had POTs syndrome and it was the first time I had heard of it. I am 48 and have been having symptoms since I was 15 and have passed out multiple times. Every time it happened I got told it was anxiety or the flu. I am going to be getting scheduled for a tilt table test by my PCP. I am just glad that someone is finally listening to me when I tell them something is wrong and that I was feeling fine prior.

[@vickyshininger]

I can relate 100%!! The cyclical thing with it can be annoying, especially if I’m ignoring the warning signs.

[@sabrinacozine8]

I think I may have POTS. I have so many symptoms, my heart rate goes from like 70 to 120-140ish when I stand, I get chest pain, i get dizzy, lightheaded, and like my hearing like clouds up and ringy like I just passed out, I haven't passed out from standing but I have passed out kinda randomly once, if I stand for a while my feet and legs get red and kinda itchy, insomnia, heat intolerance, I don't sweat a lot, I often feel really hot or cold, my toes and hand can get cold for no reason, and a lot of fatigue, and headaches like a lot. But like some days it's better and some days it's far worse so I'm not sure. I know you aren't a medical professional and all but just curious what you think?

[@miranda0298]

Sabrina Cozine I have pots. This definitely sounds like you have it. Make sure to go to your primary care doctor'

[@ChronicallyLindsay]

Definitely sounds like you may have POTS, however as you pointed out I am not a medical professional but I highly recommend talking to your doctor about getting tested for it!

[@oakleytori]

Make sure you get that looked at by a cardiologist. Do you get chest pains? that can be a symptom too. Thats one of mine on top of fainting, dizziness, brain fog, cold limbs, memory issues,... you get the idea. My POTS is brought on by a genetic disorder known as Ehlers Danlos Syndrome (type 3). type three of EDH means my bodily tissue is too loose or elastic and it causes serious blood pooling and is one of my POTS triggers. both of those together sometimes means i lose control of my limbs. EX: recently my leg had serious blood pooling and without the blood actually moving, it was as bad as not having any blood in that limb. well that caused my leg to get weak from lack of oxygen circulating. my leg gave out and my ligaments were too loose to regain my footing. i was also on the stairs at the time. i fell really really badly. my ankle, which i landed on at the bottom of the stairs, was damaged seriously. i tore ligaments and pulled muscles. according to the doctors i should have snapped everything. if my ligaments were not stretchy from my EDS, i would have required surgical repair. it is SUPER important that you get this checked out so it dosnt lead to serious heart damage or dammage to other parts of your body. PLEASE, PLEASE, PLEASe take care of yourself

[@madarasausa5600]

I legit have the same symptoms like you

[@sabrinacozine8]

I've been having a lot of other health problems too, and I brought it up to one of my doctors and he just said that sounds like dysautonomia and just brushed past it. He did diagnose me with fibromyalgia but I'm supposed to go back to see him soon do hopefully I can ask some more questions

[@joanrosario8517]

Thanks for sharing your story. I’m from the Philippines. I was also diagnosed POTS a few weeks ago and my symptoms are the same as yours. I’m also sweating very cold before I passed out.

[@nikkidr4765]

Where in the Philippines did you get diagnosed?

[@saturninocantillon7548]

Hi joan !! I'm from the Philippines too . currently lives in NJ USA how's ur pots now ??.could give me an update I've had pots too .

[@leilehua5230]

I find it interesting how you said you’re an athlete and active but experiencing pots, but i think that could also be why yours is so manageable like you said. Regardless you should stay active, im sure they’ve told you this but sticking to a regular schedule (as much as your pots will allow ofc) that includes all of what you mentioned and exercise can usually be enough for pots patients to sustain normal lives with little to no episodes or symptoms. I was misdiagnosed with “Orthostatic hypotension “ when i was in 4th grade which is literally just a drop in blood pressure when standing, basically pots. but these doctors passed me on for years not correctly identifying the condition or telling me anything to help other than “stand up slowly” so it got worse over the years especially in high school, but the past three years now have been the worst. It affects my appetite and i have severe episodes every single day. If I’m not too nauseous to eat, i probably have no appetite at all and for years I was nearly starving myself. Its triggered by stress and during that time i was VERY stressed and not able to maintain a routine, only last fall did i finally get a correct diagnosis and already I’ve been improving now that i know what can help. I used to be plagued with not just fainting spells but numbness over my entire body, but mostly in my face and eyes, i lose my vision and hearing and collapse until the blood can get back to my brain, and most times im still left disoriented with splotty vision and fuzzy hearing. I get a migraine almost every time, and by the time i try to stand again it happens all over. I’ve slammed my head into things and woken up bleeding, when the episodes start i lose control over my body and cant move my arms or legs or speak properly, and i have gone into convulsive syncope, but most of my symptoms are much better now. I’m still working through it though just no longer the worst of it, and I’m finding it hard to even just go on a walk every day or eat but I’ve already noticed a difference from what little I’ve managed to do so I know that over time i will improve if i slowly increase my activity. If i do too much then I suffer a flare up and am bedridden for days at a time and have to start all over. My advice to you, again if you didnt already know, is to maintain some sort of schedule. Also keep water at your bedside to start your day with as much water as you can (im so terrible at this😂) compression stockings and water retention pills can help but they aren’t technically necessary unless its really getting harder to manage, whats most important is diet, sleep, hydration, just normal human things lol. The thing with pots as you said is that it can be very random, but also if you experience mental or physical trauma in the future, or they say “extended bed rest”, sometimes pregnancy, can be the start of pots for some people, but for those who already have it they may experience the same or worse symptoms they’ve had even if they havent had any symptoms for years. Pots is not life-threatening, but it is incredibly life-altering, you’re likely to always have some sort of battle with it but as long as you know how to help you’ll be good! 💖💜💘 this is my first time actually looking on youtube for other people with pots so thank you for speaking out on this! Like i said in the beginning of this very lengthy message 💀 since i have to recondition my body and exercise more i was interested to hear how you are not only active but an athlete, but everyone’s pots is different! Im glad you’re able to manage yours well and hope i can get there someday soon 🥰💞

[@thegraveyard1858]

It's been a theory that I have POTS since the summer of 2017 and now it's December 2018. I've been experiencing symptoms of POTS for so long that I thought the majority of these things were just normal and a part of growing up. I only suspected something was actually wrong when my friend who has POTS was talking about her symptoms and I explained how I experience those things all the time and wondered "that's not normal?". I finally have a cardiologist appointment that is now coming up in less than a month and my symptoms are honestly slowly getting worse, or I'm just recognizing them more. I'm honestly so excited and nervous but this video really helped by giving me an idea of what the test may be like. Thank you and I hope I can inform you of an update after the appointment (if you even care lol) and that if I truly have POTS or Dysautonomia that I could be a part of this community.

[@ChronicallyLindsay]

I felt the same way! When my doctors started telling me that things I got used to living with are actually symptoms of POTS I was pretty mind blown! Good luck with your test, I hope it gives you answers! I'm glad this vid was able to offer you some piece of mind prior to your test! Please do keep me posted and comment back letting me know how it goes! (Plus even if your test is negative you are always welcome in the famurray

[@talktothemoon2023]

I've had POTS for 2 and a half years now. I would faint maybe 3 or 4 times a day. I was still in school, only 15 when I first started fainting. It was just a week and a half into the new school year, on a Wednesday afternoon after lunch. I was walking across the hall and just went down. I don't remember anything from what happened. I also did the tilt table test and had the heart monitor on for only 24 hours and not 2 weeks. I've been on medication since and it cut it down to about 3 or 4 times a week. Right now I haven't fainted in a few months but I only faint when I get really anxious or nervous so I try to keep cool about everything and not get myself worked up. Keep going with your everyday life and don't let it get you down 💜💜

[@kateburger2001]

i got diagnosed with pots about 3 months ago, and the tilt table test felt like the death of me. Absolute worst feeling i’ve ever felt. i didn’t pass out either but my blood pressure went from 160/110 to 97/60 when they laid me back down. i’m the same way about complaining so the nurse was so surprised i never said much, even though she could see what i was going through. it’s insane what 70° can do to you 🙄

[@norakvarefelt7851]

I’m going to the doctor tomorrow because my heart has been going haywire for the last 20 days. It had been wonky before but I’m seriously worried this time. I suspect POTS or a similar condition. Resting heart rate at around 110 BPM (not good at all) and when I stand up it rises to 150 BPM and above. Today it went to 176 so I’m not waiting anymore. Hopefully the doctor won’t dismiss it as anxiety... This video was helpful to calm my nerves a bit. Very informative!

[@kimberlytippen4436]

Nora Kvarefelt Same answer as same doc they will said u anxiety anxiety anxiety bla bla bla i hate these doctors..

[@SandraEKitchen]

I have been fainting randomly and through triggering events off and on since I was 10 with it really picking up around 20. My heart rate is normal at resting but at standing jumps by 25-30 when I'm feeling great and higher when I'm not, they have generally said it is POTS but it is triggered by so many things that it is an autonomic disfunction based on the tests. When you have had symptoms for this long you can pin point as soon as you get up in the morning if it is going to be a good day or not. It has chosen my career because I can't stand for more than 20 mins without feeling sick and getting up and down multiple times is a NO GO, I also have other illnesses that cause sitting difficult. Since my autonomia is triggered by emotional stress, physical stress or randomly, it is usually a slow progression. Here are some tips I have found to know if you may be in danger of fainting (sitting down and eating helps 90% of the time!): legs feeling numb/uncoordinated/stiff, pressure behind knees, stiff jaw/yawning (when you aren't tired), ringing in ears or feeling like your ears are clogged, legs feeling itchy, sinus pressure/squinting for no reason, etc. The stories I have of fainting in places are terrifying and ridiculous, moral of the story: people with autonomia should not go to crowded, standing only locations.

[@ImJustTerri]

I am now convinced I have PoTS after watching your video. I have been having "floaty" feelings off an on for 2 years now. I was hospitalized in March for an extreme dizzy episode. All tests were fine but referred to a cardiologist and wore a Holter monitor for a week. They diagnosed me with SVT. I'm on a beta blocker now to control that, but had a complete passing out episode this past weekend after standing around at a party and was rushed to the hospital, where, surprise, they said everything looked normal and I may just have a tendency to be "fainty". WTF?! I'm going to bring this up to my doctor today during my appointment and hopefully have a tilt table test. I looked at my smart watch yesterday multiple times going from sitting to standing and my HR shot up over 30 bpm every single time. I always thought that was normal :-o ! If you're still monitoring this, were you standing up when you passed out playing the game? Or were you sitting/lounging? Thanks for sharing your story!

[@nicolebroesch4716]

Thank you for sharing your story. I see that you posted it three years ago, how are you doing now? Have been living with POTS for almost 8 years and have been having difficulty managing it. I ended up having to leave teaching as I physical could not do it anymore. Currently I am trying to see what my next steps are as trying to find a job that will allow me to work when I feel well and take time off when I don't is a real struggle.

[@channelforanartlover1293]

Disclaimer: all this info I found online and by reading so please forgive me if I am incorrect, I just want to bring some comfort since we all feel this way. I think I have PoTS, I have chest pain, palpitations, dizziness and increase in heart rate, breathlessness when standing up I’m scared but this video has helped me a tremendously and the same time I know that this condition can get worse until you are like 16-18, but after it gets better, or 80% of teens grow out of the condition and don’t have any symptoms at all. Oh and I also searched up that this condition doesn’t affect life expectancy and is NOT leathal and it’s NOT deadly, so 😅 phew. Yes it can be tough but at least we’re not gonna die. ❤️

[@Hellylou]

Channel for an Art Lover I’ve had pots from the age of 11, I’m 28 now and it’s only got worse for me to the point of being bedridden having no life.

[@SpFrSpaZ]

I watch the whole video and I appreciate it, thank you

[@luxsarrazine1141]

I completely understand the whole telling people what to do when you pass out. I always tell people I may pass out due to POTS. I can normally call it when I’m about to pass out so I tell who I’m with before I pass out that when I pass out just get me a glass of water because I’m probably dehydrated and to DONT MOVE ME like people don’t get that by moving me they’re marking my life harder. When I wake up I’ll move to a better position but if they move me it’ll hurt my scoliosis and could cause my blood pressure to act up even more

[@ailynrosado6257]

I’m so confused I don’t know if I have POTS but when I fall asleep and move from my right side to my left side or viceversa my heart races . And sometimes when I stand up from my bed too ... I’m so confused and scared not sure what’s going on...calling my primary care doctor. Thank u for ur video very informative.

[@ChronicallyLindsay]

Ailyn Rosado Yeah I would definitely look into getting tested for it! Im so happy it was informative, i hope it was able to help ❤️

[@ailynrosado6257]

Lindsay Murray Thank you❤️🙏

[@oakleytori]

every case is different but heart health is something everyone should take seriously. take care of yourself and see a doctor if you can

[@annapatty4608]

Yep me too.

[@emilygrace534]

Passing out sucks, I haven't been diagnosed with anything but I've passed out 12 times before (I know, its a lot). But God it's like the most disorienting feeling in the world, it's so strange waking up and not remembering where you are or why you're on the floor and someone is probably yelling cause they're scared but got it's so scary waking up at first.

[@ChronicallyLindsay]

Emily Grace you should definitely see a doctor but yes I definitely relate & understand, I was so confused, disoriented, and scared when I woke up it’s def Not fun, I’m sorry you have passed out so many times :/

[@als2480]

The doctors think I have MS and/or POTS. Today I passed out 6 times. Average for me per day is 2-5x a day. A few minutes at a time is normal. I have about a second of well shit let's try not to hit my head. Then I'm out before I hit the floor. When my dad went to get my brother I was out for 4 min (I sent my bf a text right before getting up to use the restroom and I passed out walking into it). It's frustrating.

[@paigesimpson8930]

I have POTS but I haven’t had a tilt table test because when I had a stress test my heart rate went from 75bpm too 200bpm and I fainted so my consultant said that I do have it

[@amayarae686]

I was standing up to switch classes and my apple watch alerted me that my heart rate went from 67bmp to 200bmp and I got really scared and I almost passed out

[@mamabear8565]

This video was very informative. I had no clue a concussion could trigger it...

[@jessicalingo4346]

Im going through the process of getting a diagnosis. I just went for my 1st cardiologist appointment yesterday. I did a simple ekg in his office. Came back normal. I told him i suspect pots. He said its possible but i want to rule out all other issues before an official pots Diagnosis. I got for a heart ultrasound next week. Hopefully i dont have to do test after test like you. Heres to hope

[@tuvamyren8434]

Love your Videos❤️😭stay strong💪🏼💪🏼

[@ChronicallyLindsay]

Tuva Myren Thank you so much 💕💕

[@Obsessivedisaster]

I have POTS. I met the 120 or above stipulation in the criteria (my hr went from 97 to 123 in first 3 minutes). I see a POTS specialist this April. I currently follow all suggestions for POTS and also get IV fluids once a week and take Propranolol. POTS is hard to cope with sometimes :(

[@SleepyCatLadyy]

Soo I’m very VERY sure I’ve had pots for about 8 years now it used to be so horrible I couldn’t do anything! I was always tired and had episodes 1 a week almost it was so scary! I’m finally seeing a cardiologist in the 3rd :) and now my heart only really skips at night I do get tired and my feet get a bit fed when standing but it’s definitely not as bad as it was I’m so happy I’m getting better and having less episodes, I read that you can grow out of pots around the age of 20 and I really hope I do it’d be nice to be able to get up and do things!!

[@margicates553]

“ you can feel blood pooling in your legs” she says, and I’m suddenly aware of my feet tingling. 😆 I was diagnosed a month ago. Im mostly fatigued and dizzy, I haven’t passed out since August.

[@riley9038]

I have many of the symptoms, I get very dizzy almost every time I stand up, my vision gets blurry or everything starts to go black, my arms feel numb, fatigue, and I’ve passed out once. I have my tilt table test tomorrow, and I’m honestly hoping that they diagnose me with POTS so I can finally understand what’s happening.

[@jenasr9875]

I passed out during my tilt table test! Went to the cardiologist after I started passing out, particularly in my college library again and again. Just diagnosed with POTS!

[@IgiveZEROfksaboutapredator]

I just diagnosed MYSELF with POTS on 9/11/22 after passing out on a Saturday night gor 3 hours, and then several more time's the next few day's. After 2 MI's 8 day's apart, fainting for no reason, and having the looks as if someone threw a bucket of water on my. I was told I had the 2 MI's (heart attacks) because I lost 102 pounds in 2 1/2 month's all on my own. My Cardiologist who is the best in the several counties around me that took me to the CATH lab during both heart attacks. He found absolutely nothing at all. No coronary disease, heart was normal size, no blood clots, no plaque buildup, congestive heart failure (that's what my Mother passed away with in 2016 in her sleep). He also diagnosed me with "Broken Heart Syndrome" at the time as well. This is caused by mountain's of stress like the sudden death of a loved one, anxiety from public speaking, or even walking into a room where every yells "surprise!" I still cannot figure out what stressor(s) caused mine because I live a very peaceful life with hardly zero stress whatsoever! When I did mention to him about POTS, he looked at his Nurse Practioner & said "I don't even know why we're here, she's been correct with her last 3 diagnoses (the 2 heart attack's and the Broken Heart Syndrome), they BOTH agreed with me 100%. I'm a big nerd because I read the American Journal of Health 4 hrs a day, 7 day's a week because I'd rather be proactive, rather than reactive. To anyone that's reading this. I pray that you stay strong, and that you will LISTEN TO YOUR BODY, only YOU KNOW when you're feeling like something is not right. Thank God my intuition is extremely strong & I never discount those feel's because my intuition has never steered me wrong. If if you're being told "everything is normal please hold these Dr's accountable and do not allow them to dismiss you, because you have every right for them to run ad many test's as possible to figure out why you're having the signs, symptoms, pain, or whatever else you may be having! Again, please remain PRO-ACTIVE rather than REACTIVE! God Bless You All! We really are in this together!

[@oakleytori]

I was finally diagnosed with POTS a few months ago. Some of my, worsening, symptoms include heart palpitations, random adrenaline shots, loss of limb control, chest pain, dizzy/lightheadedness, food intolerance, inability to sit or stand for long periods of time, extreme fatigue upon extensive exertion, etc... i was seriously concerned about heart damage and it took me about a year to convince my parents to set up an appointment with a cardiologist. when i was finally diagnosed I actually broke down crying in front of my mother and the doctor in the exam room and then again when i got home. I had been struggling with my heart doing terrifying things when I stand or even if I'm sitting still for too long for over a year. my parents thought I was making it up. for an ENTIRE YEAR, they didn't believe me. I was so scared I was going crazy. I felt awful all the time, I was told I was lazy because I couldn't stand or work hard for long periods of time, I couldn't really play sports, or focus in class or on homework, and I had to spend a lot of time sitting or lying down. I wound up struggling with some serious depression because of it. it got so bad that I nearly took my own life. I felt sick, couldn't do anything, and I was told i was useless and lazy when i worked myself literally as hard as i could, occasionally leading to me to passing out. But i finally had confirmation that i was not crazy and i actually had a condition called POTS. i had never heard of it. As it turns out, the doctors suspect my POTS is caused by bad genetic pairing. Doctors believe that my POTS is the, probably permanent, result of Ehlers Danlos Syndrome type 3 which is a genetically inherated connective tissue disorder (from dad) and a small but existant history of heart issues (mom (who has an arithmia and may also have pots)). its why i have bad joint pain and bad knees. Because of all the connective tissue, and even a lot of tissues that aren't "connective" are too elastic (stretchy/loose). it means my veins can't pump the blood back to my heart propperly and my circulation is so poor it can cause my brain fog, headaches, blood poling,... My body literally thinks im bleeding out at times and gives me a "life saving" shot of adrenaline. Since im not actually in any danger, all this adrenaline does is hurt like hell. when this happens i lock up (no not a seizure, just a reaction) and my chest gets so tight and painful that i cannot breathe until the worst of the adrenaline wears off. It causes me to pass out at times. before i was diagnosed I started passing out in class my junior year. it would either be full-blown unconsciousness or i had slight consciousness, enough to know what was going on but i couldn't move at all or open my eyes. it was like a paralysis attack. i also dont like people touching me. there was a minor incident when i was younger and, while it was relatively minor and only happened once, it causes me to have mild panic attacks if i cant see whos touching me. well my teacher, refusing to believe me when i could speak and said to her i was awake and listening (often times i could still focus on the lectures in class) would stop the entire class, often mocking me for "falling asleep" and have people poke at me or shake me "awake". i was already a shy person and didnt like to be called out in front of the class. hell, i couldnt say three words in front of everyone without feeling like passing out. this didnt help my depression and the poking and shaking only triggered serious and, because of the adrenaline, painful panic attacks. i would pass out often due to these if i wasnt already unconscious. as time went by these got worse. recently, my POTS struck while i was at work and completely unprepared. type three of EDH means my bodily tissue is too loose or elastic and it causes serious blood pooling and is one of my POTS triggers. both of those together sometimes means i lose control of my limbs. ive lost use of my arm while using it to suport my body as i bent down to pick up laundry so i didnt have to crouch and stand and deal with my heart jumping and as i was pushing back up my arm gave out. I wound up taking a face plant into my pile of dirty laundry and my brothers discarded socks. ABSOLUTELY DISGUSTING, but i was left uninjured thanks to the soft landing. Unfortunately not every event like this has ended well. i have wound up with some mild to serious injuries. EX: recently my leg had serious blood pooling and without the blood actually moving, it was as bad as not having any blood in that limb. well, i didn't notice it until it was too late but that caused my leg to get weak from lack of oxygen circulating. my leg gave out and my ligaments were too loose to regain my footing. i was also on the stairs at the time. i fell really really badly. my ankle, which i landed on at the bottom of the stairs, was damaged seriously. i tore ligaments and pulled muscles. according to the doctors, i should have snapped alot of ligaments and tendons in my ankle. if my ligaments were not stretchy from my EDS, i would have required surgical repair. Im not sure if i should look into it now or later when im away at college but im wondering if having a service animal can help me protect myself from injurys in the future. Is that something i should look into or concider? does anyone know? because this happens more often that i like to admit.

[@katiekame5538]

Hi WonderingOakTree, I was just diagnosed with POT's about 8 months ago. I have all of the same symptoms as you. I still feel like I'm going crazy because my family thinks I'm making all my symptoms up. My sister is a nurse and she tells my parents I'm fine and doesn't understand how I'm feeling all the time. It's crazy because she's never once asked me if I'm ok or how I'm feeling. I think I've only seen her six times and she only spoke with me maybe three times but only a few sentences each time. I admitted myself to the hospital because I thought I was going crazy. Some how she convinced my parents I was just making it up? She's awful and she thinks she's a neurologist or a doctor? It's crazy. My parents want me to move out of there house because they said they're sick of me being sick. I'm scared and feel so lost.

[@emmas5724]

I have a service animal for POTS. I can answer any questions you may have

[@rochellea.9084]

WanderingOakTree

[@rochellea.9084]

WanderingOakTree

[@aubreyperrette357]

When you were explaining everything that happens when you have pots I was shocked because everything that you were describing was something that happens to me that I just thought was normal

[@ChronicallyLindsay]

Aubrey Perrette I was the same way! When I got the diagnosis and saw the other symptoms it was crazy realizing that day to day stuff I dealt with which I thought was normal and I got used to was also caused by pots! It blew my mind and a lot of things made sense after my diagnosis!

[@aubreyperrette357]

@@ChronicallyLindsay I would love to try to tell my mom and get an actual diagnosis so it doesn't get worse but when I tried to talk to her about possibly having ADHD she said it was for attention so I'm kind of scared to ask her to get diagnosed or go to the doctor but I have an appointment coming up soon so I might just talked to the doctor in private about it but it's a little bit concerning because now I think about it I'm not normal

[@evagoodfellow4987]

I have been diagnosed with Pots a few weeks ago I am always drained and have no energy 😒😒

[@lesliej.williams1596]

I am currently going through testing. I have had: echo, treadmill stress test, Heart cath, Pulmonary Function test, and table tilt test. On the table tilt test, I had a reaction that I do not believe it normal, after they gave me the Nitro pill to speed my heart up, I had numbness all over and then went into a state where I could not move or speak, I could hear the nurse call for another nurse but could not respond to their commands. When I came out of "seizure like" state my blood pressure was 80/30. I have not been diagnosed with anything yet. I am supposed to go see a Vein Specialist this week. Wish me luck. By all the symptoms on your blog, I have those same symptoms.

[@laurentalyor]

Did your stress echo/holter monitor come back healthy? I did both recently and was told the results showed no issues... but my symptoms are driving me crazy and POTS sounds so much like what I am experiencing.

[@getartsy1067]

For ever my doctors where telling me it’s axiaxty after 3 years they have finally found out that I have pots and it was the most reliving thing in my life and this video I related to so much

[@allysonburke8555]

I’m almost 21 and I’ve been struggling with the symptoms like 8 years but had now but I’ve only been diagnosed for 6 years. Everyone tells me that I will grow out of it because I got it at such a young age, but my POTS has gotten increasingly worse over the years. I used to be able to manage it really well, but now I’m pretty much starting from square one because none of those things alone help anymore. 😕

[@debrakleid5752]

I was diagnosed with POTS in February of this year. It’s been an ongoing struggle for a few years and I’m also older than when most get diagnosed with POTS I think. I was diagnosed at 43. I’ve been admitted to the hospital a lot due to heart rate and blood pressure among other problems. I didn’t do a table tilt test but I was admitted to the hospital for 9 days including being in the ICU. They contacted cardiology who looked at my heart rates especially when standing and my heart rate was soaring. The hospital had been suspecting this for several months before I was finally diagnosed. They didn’t want to put me through the strain of the TTT. I have high and low blood pressure. I’m on 4 meds for high blood pressure and 1 medication for low blood pressure so I always have to keep an eye on y blood pressure so I take the appropriate medication. I get very symptomatic with high and low blood pressure especially with the low. It used to be dizziness and being sleepy but now if I’m standing with low blood pressure I get a lot of bad muscle pain but as soon as I sit it gets much better. The high blood pressure tends to give me bad headaches. I’m on Metoprolol and Cardizem to try to control my heart rate because when my heart rate is around 95 or above I can’t breathe well at all and I already have lung issues. I have a central line that I’ve had for almost 6 years now (I’ve had a few different ones especially since PICC lines don’t stay in usually past one year and my port got me septic so now I have a Hickman which I like the best. I can do my own IV fluids and IV Zofran and Benadryl at home instead of going to the hospital all of the time. I also have CVID so I’m immunocompramised and I’m on monthly IVIG at the cancer center and I will be on that for life and I’m very prone to pneumonia. I’ve had pneumonia once prior to 2016 and it was minor and since 2016 I have been getting it 1-3 times per year with some being minor like walking pneumonia to some being very bad nearly getting me intubated. Lots of hospitalizations. I’m usually hospitalized 1-3 months per year when added all together each year with 2016 being the worst so far with 8 hospitalizations and a total of 3 months in the hospital. This year it’s been 9 admissions but only a month or a month and a half in. Many times I don’t go because I hate going in with a passion. Any fevers get me an automatic admission to the floor, PCU, or ICU so I wait until I can’t take it anymore. It’s been very bad for me and I pray for a cure one day. This isn’t having a life and now we have a pandemic and because of CVID and POTS I can’t work especially the job I was doing as my risk of COVID would be very high and the risk of dying would be very high as well!

[@Kay-ok7qv]

I have been diagnosed with P.O.T.S a few months ago now I can barely run or walk long distances, which really sucks is that I use to be an athlete who can run 12 miles an hour.

[@sav2823]

"I passed out apparently..." That was exactly me a month ago when I passed at work for the first time. I declined the ambulance because 1. I know it would be expensive as hell and 2. It felt ridiculous to call an ambulance for me, especially when I recovered quickly. I also did not want to be strapped into a bed in a truck with strangers flocking me, yeesh. Getting diagnosed with POTS... hopefully soon. Thanks for sharing your story! Ok your story sounds really similar to mine, I'm 18. This is crazy but really reassuring

[@faithalley5976]

I've been living with the same symptoms and more for about 4 years 5 in October, I wish a doctor would listen to me

[@MadeleineHenderson]

tilt table test here today after about 5 years of feeling awful. Got insomnia too. They had to stop my tilt table test coz i felt so ill but they had enough info, my hr goes up to 150. So crap it stops me just doing normal daily things. Thanks for the vid

[@MsJacquese99]

I think I have POTS. Just the other day in church nonetheless... I was sitting down and at the end of service the preacher wanted to sing a song, then say a prayer and invited us all to stand. I stood up and immediately I felt palpitations. According to my Apple Watch my heart rate was 130. I felt super dizzy and showed my mom the reading on my watch. I immediately sat down, closed my eyes and took a couple deep breaths. After a minute or so I opened my eyes and had black spots all across my vision. I know I was about to pass out...even while sitting down!! I just continued to try to take slow deep breaths. After a couple more minutes everything went back to normal. This has happened before but never this severe.

[@lotrhpnmask]

I have had several things constantly happening what is described for pots. Doctor sent me to cardiologist or test for manly balance. So often feel like I’m gonna fall. Already had basic office tilt with blood pressure cuff only. Getting my stress test soon. Looking into my test stuff and just randomly checking out KZbin came across your video. I have SO many symptoms of it. I don’t know if the dr is thinking it or not. No idea what is causing my issues yet till dr says. Not looking forward to the test.

[@Raven.bek219]

Im curious about this and wanted to ask. When i stand up (even if i do it slow) i get light headed and almost pass out every single time. I constantly feel dizzy and sometimes nauseous. I struggle to get to sleep all the time, and constantly wake up during the night. I get leg pain a lot, not exactly sure why. I cannot do alot of physical excersize without being completely out of breathe and nauseous, i get chest pain quite often and am in discomfort majority of the time. If i just walk for a little bit it feels like ive just ran, even if i havent. I also get headaches almost every single day and more than once a day, something pain killers dont get rid of. I hope this is enough info. Is anyone able to help me?

[@annaswanson5903]

I haven't been formally diagnosed with PoTS. I had a fainting and black-out episode over the summer and was actually referred to Oncology and then a GI doctor. I was having a very hard time retaining liquids and staying hydrated. The GI said that I have PoTS or some type of dysautonomia. I, like you tolerate exercise better than many PoTS patients. He told me to run for 30 mins every day, eat lots of salt with my food, drink liquid IV, and take anti-histamines when my symptoms are flaring. It is possible to have PoTS that presents mostly with GI symptoms and that seems to be the case for me. We discussed the tilt-table test which is the main criteria for diagnosis and he was happy to make the referral but did say it was very expensive, there is a long wait to go to the only clinic in SF Bay Area that has a tilt-table and it is unlikely that a positive PoTS test would affect my treatment. He also said that the disregulation caused by the testing and hearing your story is something to consider. I am really on the fence about pursuing it and to be honest I am not sure my insurance would cover this or if it would be out of network

[@emmablankestijn3495]

Im in the process of seeing if I have it. I have my tilt test on the 14th

[@Imtheone84]

So when you stand up from laying down and your heart rate goes 30 beats a minute higher does it go back down to what it was as you're continuing to stand and walk around? I think I might have this but I'm not sure.

[@GinaLay]

I have terrible leg pain when I stand. It’s so bad that I almost cannot stand. It’s worse first thing in the morning and evening. My legs feel so tight in my thighs and calves. My heart rate goes up when I stand. Sometimes I get a little wobbly when I stand and feel dizzy. If I close my eyes in the shower I feel like I’m going to fall over. Sometime when I am walking I will get very dizzy. My chest hurts mid sternum. It feels heavy and I cannot lay flat because of the feeling. I am going to the cardiologist in a week for an echo and appointment. I’ve done the poor mans tilt table at home and my heart rate goes up 30 + points after standing.

[@DoorDashers791]

Just got diagnosed with sinus tachycardia. 3 weeks ago I have multiple sclerosis since 2003

[@anoushkafoltier9056]

I think I might have pots but I'm not sure. I've had 3 seizures after standing up and every time I stand up I'm very dizzy and love my vision for a bit. When I'm in the shower my feet turn blue, I get very tired and out of breath from walking up the stairs and other simple activities and am quite tired, I get migraines a lot. I've had a blood test and it was all clear, my blood pressure is also normal. I dont know what it is but I think it could be this? Any advice?

[@brigittehp1589]

My daughter finally got this diagnosis recently, your story sounds like you are her twin! Do you have an update to your video since it was published last year? What have you been doing? Just compression socks and eating lots of salt? Or are you using Midodrine? She also was told POTS and then dysautonomia. Do you find it is getting better as you are nearing your 20's? We also did an endoscopy as she used to have very sharp stomach pain and a tightened esophagus. After an endoscopy, she felt horrible afterwards and all looked normal. Well as it turns out, after a 6 week elimination diet, we have figured some foods to be the culprit, dairy, etc. Thank you for sharing your story. P.S. Love your haircut. Love your sunshine personality.

[@natalietippetts4394]

Hi, my name is Natalie Tippetts and I also got diagnosed with POTS 2 weeks ago. I was wondering if you could tell me, in your opinion the worst part about having it and how you would get people to understand what you're going through. I am doing a project on POTS so it would be very helpful. Thank you.

[@kaymel9786]

I'm not sure my doctors often say I'm hypochondriac so i don't wanna say anything but for years since i was a teen I'm now in my later 20s I've had panic attacks randomly. However they increased after i went through a lot of stress. Before i took propranolol my heart rate would go to 130 just resting and I've always had trouble standing up too long. But now even on propranolol if i stand up i feel my heart beating. I dunno if it's worth saying to Dr or not because they will likely say its just anxiety I've never passed out from my heart racing but I've come close to it... 🤔

[@Rachel-sm6fk]

Thank you for sharing. (has your dysautonomia affected your GI system at all, besides the nausea?); this was my prior year and a half.. I started getting sick in Dec. 2018 with a sinus infection and still have migraines, light/noise sensitivity, and fatigue to this day; then I got Norovirus and acquired tachycardia and pneumomediastinum; then I got acute pharyngitis/tonsillitis with sore throat since then; then I ended up with Strep throat, which made me have to go through 2 rounds of antibiotics & this gave me a localized spot of stabbing stomach pain (LUQ of abdomen) - THIS IS STILL MY WORST SYMPTOM ; (along with all the symptoms compounding with Strep... I’ve gone through every test, lab, scans, etc (a lot for my extreme chronic pain) and GI docs gave me antacids, which gave me acid reflux- leading to costochondritis. I was in the hospital a lot last year, because I was losing weight, due to my stabbing stomach pain. They didn’t help, only pushing rehabfrom June-end of 2019. This was counterintuitive to me because of the dizziness & lightheadedness, tachycardia, shortness of breath, fatigue. I have also noticed increased allergies since I’ve been sick, as well as the hot/cold intolerance. My mom has spent her every minute trying to find something to help wit my pain.. We have tried a lot of natural approaches because she is a chiropractor, but unfortunately they haven’t helped yet. I will take any advice you have since it sounds like you have experienced some of the pain I have with POTS/Dysautonomia as well. I’ll take literally ANY advice, recommendations, help you maybe can offer! Thank you.

[@freyaburgess1031]

Had my tilt test last week and was a good day so my heart only went up by 29bpm!

[@marcgomez6404]

I go for my tilt table next month. My cardiologist said I don't meet strict criteria for pots but I do have autonomic symptoms that are consistent with pots

[@bitsurfer0101]

Did your stress test show any signs? How high did your heartrate get during the tilt-table test? Do you ever wake up and have a hard time getting back to sleep?

[@fabfuller4370]

I had the same thing happen to me. But they never did a tilt table test or the other things you said. Only a EKG and a heart moniter and those came back "normal". But i never saw the Cardiologist just a nurse of the doc.

[@prettyrecklesdes]

I am 21 and had my 1st baby march 24, 2019. The day before i had walked miles to grocery stores, restaurants, other stores, and bused. I felt fine nothing wrong. I went into labor the next morning and long story short had a epidural. Felt fine going in but wore off extremely quickly like I didn't even push that long and it was out. I tore in 3 places 20 stiches like owe. A nurse came in sat me up and tore off the whole tape and epidural in one big swoop 2 the side. I screamed and cried it felt like someone tore out my spine and i said that. She said the whole piece was out though. Yelled at me to get in a wheelchair and hurry and get out. I couldn't move i hurt so bad somone had to help me. Flash forward 24 hours later I was released. My mom says I was very grey and pale the only way to describe it. For a week I was just really exhausted. I missed my sons 5am feeding the last 3 days before the incident. My mom thought i was ignoring her but i couldn't remember her trying to wake me. So now one week and one day after having my son. April 1, 2019 I couldnt breathe i called my mom's phone downstairs; i was holding my son sitting on the bed, I told her she ran up stairs. Her and my cousin gave me a allergy pill maybe an allergic reaction. It didn't help my throat felt like it was closing really quickly. I passed him to my mom and she passed him to my sister. They were going to take me to urgent care. My bed was a mattrice on the ground i was staying with them just for a bit so I thought. I stood up from the ground and I got extremely light headed and almost passed out i fell and my mom caught me. I thought i was having a stroke or heart attack. My chest hurt i was having trouble staying conscious. I remember seeing my brand new baby in my sisters arms as the paramedics wheeled me away and not having the strength to say goodbye. I was back and forth between 10 different hospitals and rehab facilities. No one knew why my heart was up so high. Laying down 90 moving arm 120 sitting 125- 135 standing 160 and up. They thought i had post partum. All i wanted was my son though. That whole almost 7 weeks I missed his little infant cries and it turning to a baby cry and all his features change. I missed his first Easter and my first mothers day. The baby i held in me for 9 months was ripped away from me. He was at home with my cousins. Who acted like he was theirs. Anyway, I ended up going home I had almost died in one hospital a week before I had full body charlie horses i looked like i stoke patient. My tongue was out of my face i couldn't eat or drink and sometimes couldnt move. The hospital said let me die to my mom. That made her mad and I felt hopeless i thought i was going to die and never see my baby again. I prayed and they sent me to a new facility they stabalized me there. After I was home i did out patient stuff the heart monitor, check ups, months after fighting for it a tilt table. I only got that in November so months after all it started i was confirmed to have a severe case of pots. This whole time it got worse real quick. After the first 2 weeks i couldnt even sit up without passing out. I have been bed bound laying flat since. I tried some blood pressure medicine and beta blockers all they did was make it worse. If I try to go to sleep I get jolted awake my heart falls in the 40s and even went to 25. I'm getting attraphy. I cant go anywhere. My son is starting to walk but I am missing it because there is no room for his walker in my bedroom and i cant get out of bed. Not only do i faint but I started having seizor like episodes so im on seizor meds and i never had a seizor in my life prior. I want to stand and walk i can't go outside i cant hold my son he doesn't like laying down so he screrms out of my arms. This has been very hard. My inssurance doesn't pay for a mayo clinic and my doctors want me to go to Scottsdale for some special autonomic testing because in Nevada we don't have it. The insurance doesn't even pay for UCLA that their second pic. I only can go to Keck in L.A. They don't even think that school can help me because of how severe my case is. On top of the school says they won't do that sspecial tiltable because my state should do it but we explained they cant. Also my referals keep getting lost and the school doesnt know which area to send me neurology or cardiology or what. They think its an ANS disorder but cant test out here. I been fighting with them for 2 months almost 3 about this now. I'm affraid i won't get any better and ill be stuck like this forever. I'll miss out on my life and my sons. I can't go outside i use a bed pan and do sponge baths because i cant sit up.my mom and sisters and grandmother all take care of my son and i. I can't not only do nothing for myself but not even for my son. I been like this almost 10 months now. I drink alot of electrolite water Gatorade and regular water and salt. I dont know what else to do and my doctors dont either. If anyone has any advice on how to get insurance to pay for mayo or ucla let me know. I have Health plan of Nevada Smart Choice. I don't know what to do or how to get better. Im only getting worse. I didnt have depression most of this whole journey it has been seems like 2 or 3 months ago I just feel like there's no hope. I feel like sad because i feel like im a 21 year old who is suck in a very elderly and helpless body. I should be taking my son out and hanging out with friends. Not bed bound all day everyday using a bed pan and having somone bathe you in bed. I feel helpless. If anyone has any advice on anything please I'll take it and would appreciate it.

[@th3m4dh4tt3r]

ok hi recently when i stand up from laying down or sitting for awhile i get reallly dizzy ive been falling into walls or just falling so is this something i need to worry about i just thought i was dizzy

[@magicalindigoadult3838]

Brianna yes do u have heart pain

[@SpFrSpaZ]

I’m not sure if it’s my anxiety or I have pots because when I stand up I my chest feels weird like it’s pumping hard and then I feel a bit dizzy and I start breathing rapidly