Symptoms of POTS | How to Know If You Have Dysautonomia
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- Опубліковано 28 сер 2019
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Hello Friends! It's Aimee Esther here! I am a stay at home mama to a sweet baby girl, and wife to an amazing husband. I also have several chronic illnesses (see below). I am passionate about sharing my story to help those suffering like I do. I have a degree in health education and I am certified in nutrition, chronic disease, and health promotion.
Today I wanted to share the usual symptoms of POTS and dysautonomia. The typical symptoms are fatigue, headaches/migraines, lightheadedness, dizziness, fainting, shaking, heart palpitations, exercise intolerance, nausea, diminished concentration, coldness or pain in extremities (ice cold feet or hands), chest pain, shortness of breath, reddish/purple color in the legs or feet, brain fog, pain everywhere, muscle pain, leg pain, IBS, SIBO, Celiac, stomach pain, nausea, digestion problems, constipation, diarrhea , light and sound sensitivity, heat intolerance, new onset allergies, painful menstruation, eyes not dilating right, orthostatic intolerance. WOW! SO many symptoms! They are all over the body, from the head to the feet. It can be so hard to live with this but knowing this is POTS helps with treatment. Hopefully this video helps you! 😊
** Check out Sara's Family Vlogs: / s4r4b34r **
For more info on my chronic illnesses check out the links below!
POTS (Postural Orthostatic Tachycardia Syndrome)/ Dysautonomia www.dysautonomiainternational....
Fibromyalgia www.mayoclinic.org/diseases-c...
CFS (Chronic Fatigue Syndrome) medlineplus.gov/chronicfatigu...
SIBO (Small Intestine Bacteria Overgrowth) www.ncbi.nlm.nih.gov/pmc/arti...
IBS (Irritable Bowel Syndrome) www.mayoclinic.org/diseases-c...
Leaky Gut Syndrome www.health.harvard.edu/blog/l...
Chronic Migraines www.migrainetrust.org/about-m...
PCOS (Polycystic Ovarian Syndrome) www.mayoclinic.org/diseases-c...
Endometriosis www.mayoclinic.org/diseases-c...
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THANK YOU FOR SAYING NOT EVERYONE FAINTS WHO HAS POTS!!!!!!
I've been feeling awful for a very long time and I've seen over 15 doctors who tell me nothing is wrong. I posted a video on TikTok out of frustration and a nice woman reached out and told me to look into POTS. This is the first video I'm watching and I'm laying in bed crying because everything you're saying I have. I'm going to be an advocate for myself and talk to my doctor about it!
Do some research on upper cervical issues and the vagus nerve could very well be a structural issue
@@matthaines8136 yet there are barely any ways to fixing upper cervical and vagus nerve damage it sucks
That’s terrible. I am so very sorry that you are feeling so unheard and alone. As a nurse I apologies on behalf of the health profession for letting you down. I’m
Very sorry. It really isn’t good enough, and I understand personally. I have gone on for 10 years after an accident where I broke my back, and have had several surgeries, I’ve also been really unwell since. I also have all of these symptoms and no one listens or wants to help you. It’s really frustrating and you do not feel like your living the life you should. I hope you get the help you deserve x
I also began crying while watching because of the same reason. It's like a cry of relief because I finally have answers.
Listen to Cardiologist Sanjay Gupta. He was one of the first to tackle POTS and has lots of POTS patients. He has many videos on POTS on Facebook and UA-cam. His Practice is York Cardiology in England and he works at a hospital as well as his private practice.
My husband and I have realized I don't pass out, I sleep out. Basically my body will go all the way up to about to faint, but I have never actually fainted. Instead I get EXTREMELY sleepy and end up sleeping for several hours. At those times I wake up with similar symptoms as someone who wakes from a faint. It takes me a bit to fully wake and clear the fog from my brain.
Thank you for sharing!!!! This is exactly what I have been experiencing and I thought I was just imagining it! But the scariest moments in the last few weeks have not been anaphylactic shock, but this falling to "sleep" *alone* . Now I realise that there is something in it.
Thank you so much!!! This was so important piece of information. I am still undiagnosed.
This happens to me to. I have to go to sleep because I get so tired and then I wake up feeling confused and weak etc.
This happens to me to. I have to go to sleep because I get so tired and then I wake up feeling confused and weak etc.
Does anyone else have like adrenaline surges? Like the slightest things trigger my flight or fight & I feel my heart start to beat out of my chest, followed by heat flashes, nausea, weakness & exhaustion. It happens so abruptly. Its more of a physical response because I’m usually not anxious prior to the episode.
I haven't been diagnosed yet either,but I'm super healthy in my diet, have no medical issues,I'm starting to peice this all together, It's definitely a physical thing I agree with you 100% I've had a persons say it sounds like anxiety attacks and I know 100% I'm not anxious at the Time at all it just happens, Your heart just starts racing like you went for a jog or someone injected you with something, no matter what I do lay down sit down it continues, Very confused after if the episode gets too long my hands and arms will shake really bad,like convulsions., Then you feel like you could sleep for 2 days. I feel so bad for everybody on here. It's not a nice way to live if someone has it all day everyday. I'm starting to get it more and more now though .
I get all of what you describe if I drink coffee regularly.
Yes. I get about 1 or 2 seconds flash of despair or anxiety. And then extreme hot flash. The back of my neck gets very warm. I've been told that this is a menopause hot flash. Since I started taking estrogen, it has gotten better
im just crying right now because im so done with the sympthoms. i miss it when i felt healthy. 😭
Yes! Totally understand! I feel the same way. Sometimes you just want a break from the pain... Hoping you have more good days than bad!
Sending love 💕💖💕
@@SatumainenOlento kiitos :)
I understand the eye dilation thing. The sunlight hurts my eyes so bad. I went gluten free and took more B vitamins. Drink more water and take cayenne pepper capsules 3 times daily.
Nice! Thanks for sharing!!!
Hi, how does the cayenne pepper help? I’ll take anything that’s natural & will help me feel better but I’m worried this may lower my blood pressure and make me feel worse?
I saw a short from a eye doctor who says to purchase some more expensive "polarized" sunglasses. That the cheap ones dobt do even close to a good job.
I have never passed out either but have gotten close! Aghhh the brain fog it is horrible! (Sometimes I call it brain FROG!🐸) I sometimes feel really stupid because I can not even carry a normal conversation because my brain fails me!
I hope it's true about teen POTS disappearing-I'm pretty sure my oldest has POTS too.
This was a great video! I'm so happy we could collab together-this was really fun! I still can not believe the amount of problems that come with POTS. I'm slowly working towards feeling better and I hope I can manage now that I know what to look for!! Awesome running into you-an answer to my prayers for sure!!😍
You are amazing! So glad we have virtually met :)
@@Aimee_Esther you are too! We'll have to meet in real life sometime! 😘
Id love that!
Same. With brain fog.
I am literally in tears because i was diagnosed with pots today i found your video just by like researching i have literally every symptom you said i am in tears because for years my symptoms was brushed off to be only be anxiety today it has a name thank you so much for your video !!!!
I hurt for you because I don’t know how to deal with my health before I was diagnosed with pots and then I was left feeling alone because I didn’t know of anyone else who had pots!! So I don’t know if I was being sick of being sick that I didn’t know how to feel..? Sorry you had to go through this too! I got diagnosed with pots last summer so I think some of my friends thought I was being lazy when I would say no I didn’t feel like going out today/tonight... but I wasn’t feeling well and didn’t know what to say to them! Because I didn’t understand why?
I’ve been symptomatic from POTS for pretty much all of my memory but I was diagnosed when I was twelve. I’ve met some people with POTS that only have a few of the symptoms. I have nearly all of the symptoms, short of syncope. I’ve only passed out on one occurrence and it’s what led me to be diagnosed. But my main symptoms are near-syncope nearly every time I stand up, dizziness, migraines, fatigue, exercise intolerance, heart palpitations, lightheaded ness, nausea, and chest pain. I have gotten frustrated with doctors telling me that I would grow out of POTS and not taking me seriously because I’m a teenager, but my POTS has only gotten worse as I’ve gotten older. I know it’s a possibility, but it shouldn’t be told that someone WILL outgrow it. We just don’t know. It’s hard dealing with stigma, because I could be having a really symptomatic day where I can’t hardly get off the couch or I need to sit down in public or in the middle of walking to a class, etc. and being called a “lazy teenager”
I totally understand that. No one can see our pain! It makes me feel like no on believes me. Its so hars to deal with. Thanks for sharing your story with me. I know how you feel. We will fight this together!
My POTS has only gotten worse as I’ve gotten older too! Mine is both caused by EDS and another type that causes my heart right to plummet while walking. I can go months without passing out, and then have months of going down many times a day. I’ve gotten a service dog who has changed my life!! He can smell it coming, alerts and helps me up, uses pressure to get my blood back up. If a dog could help you, go for it, I highly recommend.🐾
I am so sorry 😞 I kinda understand what you mean. I was told that there’s no way I have all these health problems and for that reason didn’t get diagnosed with any of my chronic illnesses til last year. It’s only gotten worse for me too. You’re a trooper❤
Okay, to start, your audio is amazing, your background is amazing, basically you are crushing it!!!
Oh stop. You are perfect!
POTS is also correlated with EDS. If you're having POTS symptoms and pain, definitely look into EDS (Ehlers Danlos syndrome)
My mom has EDS and we think i have POTS
I have hypermobile type Ehlers Danlos syndrome, and POTS was the first major sign of it. POTS/dysautonomia has historically been the most prominent EDS issue I've had, but thankfully Mestinon and a small dose of nightly Clonidine has fixed my POTS. The Mestinon also knocked out my gastroparesis/IBS-C, which is a bonus!
@@Dulcimerist that's so great!! I'm still struggling to find a doctor who's willing to treat any of my EDS/DYSAUTONOMIA. I've been through too many and I now dread my dr appointments.
@@macgirl1234 I've experienced that - doctors passing me off to other doctors without treating me. It feels like a carousel of wasted time, money, and energy. I ended up having to learn all I could about EDS, the various health issues EDS causes, and the latest treatment options for them. I found doctors who would listen and who were willing to learn how to treat my health issues.
There's a really good physician directory on the Ehlers Danlos Society website, which lists doctors worldwide who are interested in treating EDS patients. Perhaps one of them is close to you.
I was diagnosed at 12, I'm 14 now still have it. Pots became an issue for me when I moved across the country because I was stressed out a lot and then that lead to major anxiety. I am going to a school in The Children's Hospital made for sick kids, I am doing better, the reason it took so long for me to get better is because I was lazy and fel lethargic and told myself I can't do anything. I am doing more than I ever have now. So if you are scared I was too, but now I have hope. Hope is all you need and you will believe in yourself and get better.
I have 17 of the symptoms you just described.I’ve had these since my 20’s…I’m 60 now.
This is terrifying
My doctor told me I have fibro but listening to the pots symptoms this sounds more accurate to my situation. Thank you Amiee ❤❤❤
I've been diagnosed with fibromyalgia too but I don't so and my daughter is exhibiting POTS symptoms but is not diagnosed.
Aimee you are still a teacher- I learned sooooooo much!! Thank you so much.
My daughter was diagnosed two years ago but the doctor said she barely had it. Her symptoms have increased this year drastically. She’s 20. It’s frustrating because we need a good doctor that doesn’t say she “barely” has it. Thank you for the video. It just confirmed her diagnosis all the more.
A lot of doctors dont know much about POTS... which ia frustrating.. Just treat her as if she has it, whatever severity she feels! Thats what i do!
Carnivore diet!!
Do you ever get excessive sweating? I do. I think this is part of Dysautonomia as its to do with the nervous system. Really informative vlog! It's great to see people speaking out about this condition! Also, I've fainted a lot and it's incredibly scary especially when no one is around.
YES! I sweat so much! Didn't even think of it as a symptom but sound s like it is! So sorry you have such bad fainting. that is so hard! I've never fainted just feel like i will.
They often prescribe Clonidine to treat excessive sweating, dysautonomia, and POTS. It calms the sympathetic nervous system ("fight or flight" response) by reducing the amount of norepinephrine and adrenaline circulating in the body. The sympathetic nervous system is the connection between the sweating and dysautonomia/POTS.
They say covid 19 flips the switch on for pots and dystatonomia . After I had covid the first time I had this horrible 2 months straight horrible then it was Barley getting better then I caught covid again. 7 months later wasn't as bad as the first infection bit symptoms were there and am still dealing with this
@@sharpadilla6801 so sorry you experienced this. When I had covid I had the most terrible time with Pots, it really flared my Pots and gut symptoms, I didn't really have any breathing issues or normal run of the mill cold symptoms, it was mainly affecting my pots and gut. I feel different strains of covid affect people differently but I did read somewhere that it causes Pots in some people who otherwise didn't have it before.
Ya I didn't have any of those symptoms till I caught covid the first infection was horrible I thought I was going to die. And second was that bad but iam still dealing with shortness of breath heart racing sweating a whole lot nervousness shaky exiety dizziness cold hands fatigue and now I'm sick with something else and it increases these symptoms and iam very sensitive to heat it like throws these symptoms in to over drive its scarey
I was diagnosed with persistent postural perceptual dizziness which greatly impacts my balance, but I also think I have POTS because I have many of the symptoms you mentioned and have watched my bpm rise 30-40 beats upon standing when I’ve conducted my own tests at home. When I’d go to the doctor about my symptoms, it was always that I was anxious and there was nothing they could do but give me some pills to help, which didn’t.
All same here, pppd too. And yes doctors have no idea
I’m having these symptoms and have for the last 3 years this week I’m getting tested you make the best vids and the other day I told my dad I had brain log instead of brain fog
Thank you. Drs brushed me off twice now. I have everything but one of those symptoms. I only fainted once so they didn’t care. I have fibromyalgia and chronic migraines. As well as another autoimmune disease etc. I’ve always had dizzy issues esp in summer time and have a very hard time standing in showers. I start seeing gold glitter ✨ i have heart palpitations. And in so much pain every day and every night. I just found your videos and watched a couple. Thank you!
Omg I had no idea about pots until tiktok, when I was a teenager I passed out twice from standing up too fast and my parents thought it was low blood sugar/pressure but I had/have still quite a few of those symptoms and now I’m thinking I had it for a few of my teen years, thankfully I only have a dizzy spell maybe every two weeks, but I’ve suffered from the aforementioned (by you) migraines since I was at least 16, and still do quite badly, idk if I still have it or ever did, but if I did then I’m glad I clicked on your video to be informed about it (:
I love your video. I was in the severe category back around the time I was first diagnosed but through treatment became functional enough to work though I still feel symptoms all the time daily.
Girl I feel silly I commented on your other video talking about your pots asking about leg pain but you answered my question in this video thank you again for creating such great content.
Girl! Yes! Whats weird is it seems like others with pits dont get as bad of leg pain as me. I also have hashimotos disease which can cause some muacle pain too so i dont really know if its a pots symptom or hashi but if you have it too then i dont feel so alone. Its my worst symptom for sure!!
I was recently diagnosed with POTS after getting my second vaccination. I get irregular heart beats...feels like I'm having a heart attack at times. Chest pain, fatigue, dizziness, standing up quick triggers it...eating food triggers it...heat triggers it. Im constantly fatigued and find it difficult to stay motivated. After a year of searching for answers at least I now know that it's not in my head
Had the same symptoms. Especially eating food triggered me soo bad . I was not eating food for the longest time 😢😢
@@sarasb5314 do you mean you started getting heart racing or palpitations when you eat? Because that happens to me and I have no idea what's causing it! 😥
Have yet to be diagnosed with POTS but almost everything you said in this video is true for me. I went through a process to get tested a few years ago and because I said the words “I think I have POTS” the doctor just decided to write off all my symptoms as dehydration (which isn’t true lol) so I’ll have to find another cardiologist soon
Yes I've been told it's probably dehydration too. But I drink plenty of fluids and water intake is above normal and still get these symptoms.
😊don't give up
Recently found your channel after being diagnosed. I have had Chronic Fatigue Syndrome/fibro for almost 10 years. I never realized POTS was a thing because I just assume it was CFS because the symptoms all overlap. Wasn't until I saw a new specialist that he picked up the irregular heartbeat 10 years into having CFS and sent me to a Cardiologist. Your videos are helpful and I cant wait to watch more
Totally understand that! I was tested for everything and no one ever brought up my heart beat! It was life changing to know that I had POTS causing all these issues. Wishing you luck! Keep me updated!
Thank you so much for this video! My POTS-like symptoms have been getting too severe to ignore anymore, so I’ve been doing a little digging and I’m glad I found your channel. Looks like I’m gonna be emailing my pain doctor...
Seriously tho, thank you
Good luck! I hope you find some answers!!
Hi Amy, I am Nicole, I’ve actually had parts since I was 14 years old. And I stopped my medications when I was 16 because I was being stubborn, and in denial. Now that I am 20 my part is flaring up, so bad that now I have to restart my medications and I can barely do activity, it’s really really sucks. I’m thinking of doing a video on my UA-cam channel on pots as well. I recently started using compression socks like you have recommended, and they work pretty well, because my feet are always numb. So I am grateful that there are people like you out there, who can really inspire us people, who have parts. I have parts, and I’m blind, so the sound to sensitivity is now completely and horribly extreme. I jump for anything. LOL
Wonderful video as always 😊 love you Aimee ❤ . Anytime I stand up my feet instantly change colors they turn a dark purple dark red and sometimes the tips of my toes would be really white like you could tell it had to do with blood circulation . Standing is awful for me and brain fog is so relatable because it's like I know what I am saying but how can others not even if it is the wrong word . 12 more days until diagnosis day !!! Your videos will help so many people ❤ including me !! It's true that when you look up your symptoms and try to type every symptom in and search for videos it's hard to find any to even fill out one hand you know if you counted how many videos there are . Big hugs and kisses ❤
Awe. You are the BEST! Can't wait for your diagnosis day! Keep me updated! Let me know if you have any videos you want me to make :)
🎉I'm definitely having a lot of these symptoms!
Thank u so much for making this video
I found out that I have POTS
Edit: about a year or ago I started to get almost all these symptoms and I never knew why so thank u so so much
So sorry you have to deal with POTS 😔 but also so happy you have answers. We are in this together!!!
Aimee Esther yeah we are!
I am grateful to find this channel. I didn't know this existed and I have many of these symptoms. If i don't drink enough water, I get shaky, when I stand up, I get dizzy I feel like Im going to fall down, so tired after standing up for a little while, brain fog, I forget words, heat intolerance, random pains, chest pains, stomach issues. It feels to me that my doctor thinks I need to work on my stress and maybe that can contribute but I keep thinking there is something else going on. I don't know if I have this but hearing this gives me hop that maybe I can do something about it. thanks for posting this.
I feel the same way… I have all those issues you said too. I thought getting shaky from not eating was my blood sugar but I’m not diabetic and my heart always acts up when I’m fatigued or haven’t eaten etc. I’ve been told I need to work on my anxiety and stress too which I know is part of it but there’s more to it than that
@@annablair6903 it's happens to me, I started going to therapy and some things get better, but I'm still worry
Ty. One been looking. I just learned abt pots. And watched ur vid to see the symptoms
Ive typed in all my symptoms. Binocular vison come up but my doctor said my eyes are fine. Finally found something that describes everything i feel.
I haven't been diagnosed with POTS yet, but you've described everything I have been experiencing! Thank you! I have Lupus and Fibromyalgia, but I've been having all of these symptoms, including crazy fatigue and leg pain when climbing stairs, and I just knew there was something else. My rheumie is sending me to a cardiologist who specializes in POTS and Lupus, so hopefully I can get some treatment soon.
I hope you can find some answers soon! Keep me updated!😊
@@Aimee_Esther For pots and lupus -
auto-hemotherapy
1 or 2 teaspons of baking soda in water per day
Mineral and vitamins - Sea salt , Magnesium , B1, Vit C , B12 , Iron , Omega 3
Hoping you can get adequate treatment soon! POTS is very common with Lupus.
Thank you. I’ve had almost every symptom you mentioned on and off since I was about 15. Then they went away for awhile, or I helped regulate them with things like sitting on a stool when I needed to (majority of my shift) when doing hair for 15 years. Went away for the most part besides small things like being dizzy when standing, heat intolerance, the purple feet when standing. Then since I had my lastborn baby never has gone away lol. Had no clue it could be this! Will bring it up to my pcp at follow up this week ❤
Hi Aimee! I’ve never been formally dx with pots(dysautonomia) but I’ve known this is a problem for me. I nutritionist I went to for Small fiber neuropathy said it came about due to dysautonomia. I too have purple feet and ankles. I’m currently on a keto gaps lectin free diet that has helped. The downside is loss of energy which is so vital to healing. I advise you watch the upcoming summit on mast cell activation syndrome & histamines. I believe I most likely have this ( and you). See if you pick up any ideas. I just finished watching my doc Dr Kelly mccanns summit on the same and realized I most likely am dealing with this. Thank you so much!!
I hv Autonomic neuropathy & SFN which r also Dysautonomia. Affects my entire GI system, my heart, and i cant sweat at all, which is very danger. Im glad Dysautonomia is getting more exposure. Tyfs!
Thank you for the informative video. I suspect I might have POTS. I have all the symptoms mentioned and I'm constantly fainting. I can't even take a warm bath anymore. I have to sit in the shower and not exceed 15 minutes or I faint. The palpitations are so uncomfortable. I can literally see my chest pumping and feeding tube dancing
Sorry you experience this. Is your feeding tube due to gastroparesis? Do you have one of the types of Ehlers Fanlos syndrome?
I have hypermobile type Ehlers Danlos syndrome, along with POTS, digestive dysmotility, the usual pain and fatigue, and other issues.
Thank you! My Fiancé has it
My POTS/dysautonomia, IBS-C/gastroparesis, migraines, exercise intolerance, temperature dysregulation, heat intolerance, chronic and severe pain, chronic fatigue, brain fog, Raynaud's (cold feet), and other health issues are all caused by my hypermobile type Ehlers Danlos syndome (hEDS) - a connective tissue disorder witch affects the collagen in the body. My hEDS was initially misdiagnosed as fibromyalgia and chronic fatigue syndrome, which is a common mistake that doctors make since most are unfamiliar with EDS. Thankfully I don't have Mast Cell Activation Syndrome, which is very common with Ehlers Danlos syndrome.
My POTS/dysautonomia has been effectively treated with the vagus nerve stimulating medication Mestinon, which also treats my IBS-C and gastroparesis. I also take a small dose of Clonidine before bed, which increases blood volume by reducing blood pooling, and reduces the amount of norepinephrine the body releases into circulation, which in turn calms the sympathetic nervous system and "fight or flight" anxiety and panic response.
Thank you for talking about different severities in this illness! Some don't talk about this. I pass the diagnostic criteria but years ago didn't think I had it because I have a lower resting heart rate. I also have pretty much all the symptoms and have my entire life. I also have had it as long as I can remember but have managed it well. I have flares but it's not too bad. I only do yoga and Pilates and aerial dance for exercise. I make sure I teach night classes so I can go to sleep when I get home because I'm too tired afterward. Never felt energized from exercise.
Edit: Have you ever left your phone in the fridge or in a closet? How about putting a dish in the garbage instead of the dishwasher? Or taking an item out of the fridge and putting it back in a cabinet instead of back in fridge? The other day I poured the last drops of detergent I had left for a much needed laundry load into the softener area instead of detergent area. I had to run an extra rinse and spin cycle because, even with all my efforts, I couldn't empty the softener thingy completely. Oh yeah, and forgetting how to spell an easy word like table because it looks weird even though it's spelled correctly. Yep, love the brain fog.
Thank you for sharing your story!! You are a rockstar! My brain fog is so bad haha. I forget everything and always say the wrong words when having conversations haha!
Yes! I put my blood pressure monitor and car keys in the fridge. I laughed so hard. Have crawled up stairs, hugged a tree once because of dizziness, people approached me asking if I was ok,I said yes I'm perfectly fine thank you, lol.
Yes! It was fantastic to mention the different severity levels as I have all the symptoms, but I am not sure if I would pass the tilt-table test at all. Yes, 29-30 beats increase when getting up, but my other symptoms are very strong. It also could be the blood pressure problem or something else all together.
@@SatumainenOlento yes, my Dr also thinks I have circulation issues. But there is a dysautonomia type that has low blood volume. I think it’s referred to as hyper POTS? I’m not sure. Been awhile since I’ve learned about it and the brain fog is real. There are so many things under the dysautonomia umbrella and we aren’t just limited to one. I have really low BP and my Dr thinks that also has something to do with it. But my heart routinely jumps 50+ bpm when I stand. Sometimes it doesn’t but most times it does and it increases with the heat (though I love the heat because I’m always cold). I just have to up my salt intake and use salt pills. There are definitely varying symptoms. I’m not as severe as some whose HR goes really high. Mine usually caps at 145ish if I’m just standing but will increase up to 160/170 with movement. I’ve heard some get that increase solely on standing. I also didn’t think I had POTS for a long time because I didn’t know it was 120+bpm upon standing OR an increase of 30+bpm from sitting HR. That made the difference for me because my HR wouldn’t always increase to over 120 upon standing but would always increase 30 bpm or more, mostly 50 bpm. But my HR can go so low when I’m sitting or lying that the increase wouldn’t make it hit higher than 120. But there are also times for no apparent reason it will increase while I’m just sitting or laying down and it gets pretty high. I don’t know all of what’s going on with my heart but at least there’s known that something is going on. I’ve had 2 echos now and am waiting the results of the 2nd as it was just last week. It’s a long road but once answers start then it seems the ball gets rolling. Sorry for rambling lol Hope your ball gets rolling and you start to find answers. It’s a long road but just keep pursuing answers! They will come one day
Omg I can’t believe I finally found someone who understands having freaking multiple chronic issues… and some of mine are just suspected issues not fully diagnosed. I finally got the diagnosis of fibromyalgia last year bc all my pain and fatigue was taken seriously after so long of being told it was growing pains. Now I’m 21 yrs old, was told I have ovarian cysts ruptures monthly and possibly endometriosis (haven’t had the exploratory surgery yet). My cardiologist said I might have POTs but when they tested me for it I didn’t have as dramatic changes in HR bc I take metoprolol. Yesterday I checked my HR from laying to standing before metoprolol and it increases 30-50 bpm. On my metoprolol it only goes up by 20-30 or if I’m lucky and get up slowly and have had enough meds/water / salt it’s only increased by 10 bpm. I don’t actually pass out but I’ll get dizzy and start blacking out and end up on the floor sometimes… I feel stupid but sometimes I crawl if I don’t want to fall on my bad days or just hold onto an object for 2 min after standing for dear life.
Thanks for the video!
I quite working December 2019, I believe something was wrong...😰 I don’t feel good!
And was hoping to get better then I got diagnosed with pots in the summer... and then I covid into the fall and I don’t feel good enough to get out of bed! My heart was hurting so bad 🥵 so the specialist put me on a med for it! So if you have pots don’t want covid!!
I basically have all of the symptoms that you've mentioned, and highly suspect that I have dysautonomia as well. But, when I went to see a cardiologist and told him about this, he immediately cut me off and said: "don't waste your time on me", and referred me to a psychiatrist instead. I suppose he mistakenly believed that I suffer from anxiety disorder. Like seriously? I'm definitely gonna get anxiety one day if my symptoms keep getting written off like that.
What in the world?! Not okay! I am so sorry you were treated that way. 😥 I hope you can find someone who will help you!
Is the same for me, they symptoms get better when I went to therapy but I still have some of them
I have POTS and arrhythmias. Before starting my medication and changing my lifestyle I don't have nearly as much symptoms as I used too. I would be dizzy and lightheaded all the time. Vertigo to the max, I would faint often. This went on for years until I finally saw a cardiologist and had a bunch of tests done and got diagnosed with POTS and also an AV block second degree type 1 which is what causes my arrhythmias.
This video was great thank you!
All your diagnosis sounds alot like me! I have Ehlers danlos syndrome...curious if you have ever seen someone to ask about this? Eds can cause or increase the likelihood of getting almost all of what you have xx
I think I have POTS I have a couple symptoms but yeah very informative video Aimee
Hi Aimee, I have just been diagnosed with POTS, for me, I faint a lot. Without warning. The Dr was very excited about (finally) diagnosing me. I'm having trouble coming to terms with this because I gave up on being diagnosed. It's just as well he has enough confidence for the both of us! You said that you were happy to hear stories, mine is that I don't know my symptoms because no one told or asked me the right questions. I don't yet know what isn't normal. I never questioned things like a racing heart while standing, I thought it was anxiety. Fell through the gaps. The symptoms fit me, I'm struggling to come to terms with this diagnosis. (You would think I'd be relieved, I'm actually stunned instead.)
I am sorry thing diagnosis is hard for you! Just know we are in this together!! Do you have an;y questions about POTS?? I will be doing a POTS Q+A soon and would be happy to answer any questions you have about it to help you better come to terms with it. :) Keep fighting, my friend!
Thanks for a positive video and prompt reply. :)
I have all the questions! I will be discussing this with my Dr, ofc, but there are things that I haven't figured out yet. I'm scared that he's wrong and I'll be back to "Undiagnosed fainting spells" again!
What are "digestion issues?" What does that look/feel like?
What is abnormal sweating?
Why are some days worse than others, how do we deal with this?
Can you get your fitbit to alarm you when your pulse is high? My pulse will increase, but I never knew that was an unusual thing and am having to re-learn to take notice of it. I haven't had all the tests yet, but I'll get towards 130bpm while standing and that (only happened 2x while being monitored, so far) and that is lights out for me.
Dealing with alot of dizziness from last few years. I almost pass out few times but never. I have alot of symptoms similar to msa but my doctor tells me that i am too young for that and i may have pots.
I hope you get it figured out! Bring up pots with your dr!
Aimee Esther this video helped me sooo much! I have been having such INTENSE symptoms lately.. I have Crohn’s disease Brain fog/very dizzy(I had to sit down) my heart RACES when I stand up(my resting HR is typically 65-70 & it jumps up to 130’s. My chest starts hurting sooo badly /brain fog has been intense & (I notice all the symptoms get worse around my period) my legs/arms ache /light sensitivity/heat sensitivity/ I also get these weird almost like electrical current feelings in my arms/legs & sometimes in my face. I also have panic attacks out of absolutely nowhere(it starts in my arms & its sooo painful then it moves to my chest) & it varies in intensity. I get soooo exhausted to the point I have to lay down immediately.. and then on the opposite side I go through bouts of insomnia. I also start sweating profusely.. speaking of cold feet/hands I also get that in my thighs(it’s such a weird sensatioñby
@@misssamhain4334 That sounds like hyperadrenergic POTS. Have they tried treating you with Clonidine or Guanfacine to reduce the norepinephrine and adrenaline surges that keep leading to your issues? Those two medications are also often prescribed off-label to treat insomnia and anxiety, since they calm the "fight or flight" anxiety response.
I needs friends who understand. It's been terrible, treated like trash by doctors private sector and hospital
Trying praying a fundamental doctor can help.
Have zero support system and my whole life has been turned inside out
Dr. Clemens with the PKD diet. Addresses many of the symptoms you mention. I use to have fibro, gut issues, chronic pain, excess weight, all gone .
I was diagnosed with Chiari 1 a few years ago. We thought that was the reason for all my symptoms. Which are : brain fog, muscle and joint pain, weakness, excessive sweating, extreme fatigue out of blue. I can't stand withouth a high heart rate and feeling like passing out. Just to do dishes or stand to put on make up is horrible. In the sun my eyes will not stay open if it's bright unless I wear sunglasses. It's like they automatically try to shut. Along with many others. I feel I need tested for POTS but my primary is not putting at the top of the list to get tilt table test done. I'm getting frustrated. I am still trying to work. I am 39. I have been fighting these symptoms for a couple years now. I have been through many many jobs just trying to make it. I'm just starting another 3rd shift homecare job. Just so I can work at more of my pace, but it's getting really hard to do the simple things and during flare ups it's impossible. I'm so stuck and don't have a clue where to start or what to do. I just wanna make it. For my kids and myself. I need help in a real way😢😭😭
I definitely have "undiagnosed" POTS. Literally have all the gut problems you do, and the cold extremities makes for a tough time when I want to do outdoor winter sports. But in the summer, or hot weather, I actually find worse than cold hands at times, because I feel like I can't regulate my temperature and get lightheaded sooo quickly. I have body pains, aches, cracking.
All that said, after starting my gut balancing treatments and switching to mostly a whole food diet predominantly meat and greens, I feel much better!
thank you for sharing, I went to the ER yesterday because I had a high heartbeat, and I was feeling really tired and couldn't catch my breath, my leg pain started today:( thank you for sharing about the sensitivity to sun light, I thought I was going nuts because they keep telling me I'm healthy! and I feel really bad. I'm experiencing a lot of sadness at the thought that I might have to quit my job like Aimee did, I'm just not the type to sit there! and this thing is like ending my way of life.....Any natural treatments out there???
Hydration with electrolytes and compression calf sleeves can help. Finding the right medication that works for you might take some experimentation with your doctor. Usually beta blockers are first line treatment. If that doesn't work out, Clonidine or Guanfacine can be tried. If beta blockers helps, but lowered blood pressure too much, Ivabradine is often used. Mestinon is a newer treatment option, especially if gastroparesis or IBS-C is present, and is an older medication that researchers have repurposed as an effective POTS/dysautonomia treatment.
Good Chinese Acupuncturist can be very helpful! Both the needle and herbal treatments.
And homeopathy!!!
But research the practitioner and follow your gut-feeling! The best healers are always going to be the ones which make you feel heard and cared for ❤
And take your time with all of these alternative ways as they work more subtly than Western medicine. But the effect might be longer lasting as well (if not full cure in some cases!).
sounds like low potassium/ electrolytes.
i found this out when i went to the er 4 times
I am pretty positive I have POTS. I told my doctor and she said it’s over diagnosed and diagnosed me with long Covid. I had POTS symptoms before Covid. I was put on Metoprolol, but I’m now experiencing dizziness, nausea, vomiting, and feeling faint. I wish I could find out what’s going on. I also have Fibromyalgia. I have IBS. I was dealing with Tachycardia and feeling shortness of breath and feeling like I would faint, so I believe it’s POTS (brain fog is terrible). I am very heat intolerant. Metoprolol worked until I started all these new symptoms. I don’t go out during Summer.
Wow i random pain as well. It happens in my arms, legs, neck, and even head sometimes. Its worse in my legs but my anxiety can exentiuate my pots which causes arm and neck pain. Usually exercising gets rid of it tho.
I can relate to everything you are dealing with. Everything. I just had my genome sequenced and it said I have the MTFHR mutation and Orthostatic Intolerance, possibly Classic EDS and I have suspected Mast Cell. I have never been able to explain why I can't stand for very long. I have to keep my feet moving and I have to sit for at least 25 minutes of my massage sessions. It is so hard for me. I have had to taylor my sessions around my ability to stand. I about die if I have to hike in the heat much less walk up my driveway. I used to pass out a lot as a teenager. I was diagnosed with FMS and CFS as well as GERD, ADHD, Adrenal Fatigue. I also get what I can only describe as POTS attacks. They started at age 22 and they progressively got worse. It's like head to toe parasthesia in shock waves. Like I'm being electrocuted. They completely stopped when I started a beta blocker but the pausing still happens and that makes me super tired. I don't know what that is. I had an inconclusive tilt table test because they told me to take the meds I was taking to control them. When I was measuring them and my heart rate was dropping below 45 and then spiking up while I was asleep. I was diagnosed with so much of this so many years ago and I treat myself that they don't believe that anything is wrong. Save my hormone doctor. She's been great. I wish she could be my primary care physician. But why on earth would anyone take 20 supplements for fun? I don't even want to take my thyroid meds. I just want to do normal. It seems clear, though, that my genes had other plans. Are you on disability?
Hoping you can get screened for Ehlers Danlos syndrome, so you can know for sure whether or not you have that as the root cause of the majority of your health issues. I was diagnosed with hypermobile type EDS, which was a unifying diagnosis for my POTS/dysautonomia, pain, fatigue, digestive issues, etc.
My doctors switched me from beta blockers to Clonidine instead, and it works much better for me. Beta blockers keep norepinepherine and adrenaline off of the beta adrenergic receptors, while Clonidine signals the body not to dump so much norepinephrine and adrenaline into the system in the first place. Mestinon has also been a huge help for my POTS and dysautonomia, and is a new treatment option - dysautonomia researchers have recently repurposed this older medication as an effective POTS/dysautonomia medication.
I read somewhere that taking meds for ADHD helps calm down POTS.
Maybe look into that?
I've suspected I have POTS (or some similar dysautonomic disorder) for a while now. I started to experience chronic pain in my legs and lower back several years ago, but last year it got to be so bad that I started to use a cane (and I later got a rolling walker, too, for if I needed to be out for a lengthy period of time). Other symptoms, like bladder issues, recurrent nausea, difficulty maintaining body temperature, and chronic fatigue have come and gone at different times, but have gotten more noticeable in the past year. It's hard right now to see a doctor, with COVID being what it is. I did manage to get a video appointment with my PCP next week, which...is better than nothing. At least I can tell her about the symptoms I've been having.
Do you have hyperflexible joints? If so, have they screened you for one of the types of Ehlers Danlos syndrome? That causes POTS, pain, fatigue, dysautonomia, bladder issues, and a lot of other possible issues.
have you ever been tested for chiari malformation?
My cardiologist diagnosed me with Autonomic Nervous System Dysfunction back in 2012. My neurologist rediagnosed me with dysautonomia (essentially the same thing as Autonomic Nervous System Dysfunction) in January 2022.
My symptoms are- high blood pressure-> specifically malignant hypertension because of damage to vessels in my eyes, kidneys and liver; tachycardia-> have had three episodes of SVT as well; poor temperature regulation; my circadian rhythm is trash; central sleep apnea; poor tolerance for being vertical; and my least favorite-> bladder control issues.
Central sleep apnea with pots ??? I have that as well....
How do you mage central sleep apnea ??
This is the first thing I've seen about POTS that mentions digestional issues! I've been wondering for a while now if I have POTS, because I have dizzyness on standing, multiple fainting spells in the past (especially when I was pregnant and standing all day at work), as well as heat intolerance and very low stamina for cardio. But I've also been dealing with fairly severe abdominal pain and other digestional issues for years now, and have never been able to identify a reason. But maybe this indicates I do have POTS...
From POTS people I've talked to (and my own experience) it seems like most of us have a lot of different problems all over the body that seem unrealated.
I’ve had pots since 10 but wasn’t diagnosed till 15. Was told that it was so many other things before a doctor did blood work and referred me to a neurologist who then referred me to a cardiologist and that’s when I got diagnosed.
I hate how hard it is to get diagnosed! Glad you finally got answers!
Hello it started about 6 years ago.. I had some sort of bacterial infection atleast i thought thats what i had the doctors put me on antibiotics then about a week after id taken the antibiotics id started having all these bowel issues with constipation diarrhea which i was able to deal with went to the doctor they its ibs well about a month or so later i came home one day and i got so dizzy and started vomiting that was the start of it although i havent vomited since then at first i thought maybe this is just a flu and it will go away nope i was wrong i continued to get this severe dizziness any timw i would go on long walks at first my systems werent as bad i could still do some things as long as i wasnt outside on longer walks then i started getting to the point that every thing i did id get dizzy and im not talking just a lightheaded im talking drop you to your knees and cant move your head at all.. Then it just kept getting worse like more and more things would trigger this like for instance playing a game of darts walking to the end of the driveway temperatures above 68 degrees ill notice an attack coming on ill start feeling really hot my vision will start going blurry my heart will be beating so hard and so fast thst it litterally hurts with every beat. Sometimes my heart will pause for a second like its skipping beats ill get very weak especially in the legs and it got this sever over the course of 2 years there have been days where ive been so bad that im stuck on the floor and i cant move in the slightest bit at all or the dizziness intensifies i cant even take a sip of water if someone speaks to me during the severe episodes i cant talk back to them or it gets worse i pretty much have to lay there helpless for sometime 2 hours untill the dizziness eases up then theres days ill be in the middle of doing something an ill forget what or why i was doing it. Ive went to over 15 different doctors and always got the same awnsers its just anxiety or its just migraines here take these meds they should help and notthing was helping ive even cussed some doctors out because they tried saying my symptoms are made up they cant possibly be that bad. And after dealing with this for so long and not having any awnsers id just about given up was having suicidal thoughts because it was looking like i was never going to get an awnser nobody could tell me what was wrong with me why i was feeling this way im not even able to do the things i love to do like play horseshoes or go fishing i cant make plans with anyone because i never know when im going to be feeling bad and going to a grocery store that makes things worse especially standing in line... I just cant do anything i would like to do i had to quit my job as a CNA lose everything id worked so hard to get... Lost my wife over it because she didnt understand she would get mad at me when we had plans and then id start feeling bad she would accuse me of making it up and there would be times when her and i would argue and that stressed me out big time and id get bad shakey and collapse to the floor she would say i did it for attention. Nobody in my family believed me they all said its all in your head or i was lying it was just a week ago i got a breakthrough i posted in online groups looking for help explaining what i was going through and someone replied and told me to look into chronic fatigue syndrome so i. Checked. Online for it it had some symptoms so i looked up diseases simular to cfs and the first one i came to was POTS i looked into it and every single symtom id been experiencing was there and how its diagnosed was a simple test so i got my pulse oxy and blood pressure machine sat down took a reading my pulse was 84 stood up took it again it was 121 and waited a few minutes took it again it was 124 i took pics of everything sent it to my cardiologist he had me come in for an appointment and he then told me based on all the test he did it sounded like i deffinately could have pots. That was yesterday so i went to my regular doctor for a second oppinion and he agreed. And said that definitely explains all my symptoms. I litteraly left there in tears i was soo relieved to finally have an awnser maybe one day ill be able to have a somewhat normal life i was given metoprolol and some info on lifestyle changes not to confident in the metoprolol though but only time will tell at this point
I have pretty much all the symptoms, but not diagnosed yet. I was finally diagnosed with fibro several years ago. I was recently referred to a disautonamia clinic near me recently, but they stopped accepting new patients due to a 2 year waiting list! The next 2 closest clinics are in 2 different states! Not sure what to do next.
Thank you for the informative video.
I'm 12 and have many of those symptoms however when i stand i feel most of those symptoms but my heart rate doesn't rise too much but it does still feel horrible .
Anyone any idea what it could be
To be honest, my POTS began after my recovery from an eating disorder in July of this year, which I believe is an "aftermath" of the disorder I delt with for 4 years (I'm 21 now)
I also noticed stress/anxiety can make the conditions much worse. I'm not sure if it's common for PoTS patients, but it was an interesting observation.
Stress and anxiety can aggravate hyperadrenergic POTS, which is triggered by norepinephrine, adrenaline, and the body's "fight or flight" stress response. That's why beta blockers, Clonidine, and Guanfacine are common treatments of POTS. Ivabradine and Mestinon are also popular POTS treatments, but work in alternate ways.
Just found this video. No diagnosis. Butni have like all those symptoms minus fainting. Though some days my heart rate stays in tachycardia and i almost faint everytime i get up with those. Went to the hospital the other day they ran a ton of tests. Everything was normal despite high heart rate. It was stuck at above 100 sitting and as soon as id stand it would go to 135 150. And my bp was elevated. Idk all my pcp says is anxiety but the hospital tested that theory. Ive been battling these episodes for 2 years along with like all the symptoms you mentioned. I lost my job and everything. I was housekeeper physically demanding and then boom i couldnt do anything physical. I know your not a dr. But it puts my mind a little at ease hearing this stuff. Im going friday to a new cardiolgist who will hopefully listen. My last one diagnosed me with PVCs a couple months ago but didnt want to do any other testing besides the holter moniter. Its so frustrating.
Totally understand feeling that way, It is so hard! You are so strong!! Keep me updated!:)
@@Aimee_Esther thanks so much for seeing my comment. I went to the cardiologist. She gave me the orthostatic tension test i think its called? She said its the hyper version of pots where my bp rises and she also suspects Inappropriate sinus tach. Shes still got me set up for more testing to rule anything else. Im so relieved unlike any dr this one actually listened to everything i had to say and ive finally got spme answers. So ill deff be watching slme more of your videos as a newly diagnosed potsie. Thank you for what you do and hope all is well :)
It's funny because I overthink a lot, so when this first started happening I thought I had early dementia lol but no, it was just my brain fog. It's frustrating that not a lot of doctors know about it but I'm going to keep fighting until I get treatment.
I have heat intolerance like breathless in heat and cold intolerance like shivering with normal water bath or wet in rain always shivering excessively very badly and breathless after physical activity but is it disautonomia or pots or autonomic dysfunction
I just watched a video explaining the eye dilation thing. It's more common with hyperadrenergic- pretty sure I spelled that wrong. But it's when your sympathetic nervous system is activated and norepinephrine is triggered and your put in a state of fight/flight mode. This is why people with pots experience adrenaline rushes. Apparently with this dysautonomia, your body can't regulate or balance between the types of nervous system states. So if you're a car, the wheel is constantly being fought over by the parasympathetic nervous system (responsible for rest and digest) and the sympathetic nervous system (the protective over-prepared fight or flight mode). When your body perceives a threat, in the case of someone with pots, this could look like walking to the mail box, your super sensitive nervous system kicks into fight/flight mode. It may be perceived as anxiety, but it's physical, not mental. This is why the eyes dilate irregularly sometimes.
I'm still learning about my pots and am grateful I came across your channel. Thanks for the awesome content.
Yeah, I got the other version of this... the "HYPERtention" one. So everytime I stand my systolic goes from 128/136is normal to 154/158! It's crazy! I also have SVT just to make things worst. Normal life is just not available.
My symptoms are near fainting but I catch myself. So it looks more like temp weakness/light headed. Sometimes I do get the "have to go to bathroom to pee effect".
Still trying to find a route to help myself with this. My DR said, come back in 6months to see how things are going! like wt.... I have to live with this and work with this...no worries I guess. It's just unreal how some DR assume life with these symptoms are just "normal" and will brush off patients.
My feet always turn purple and get so cold. It freaks my husband out. I started to noticed I likely had POTS when I almost blacked out once. I got tunnel vision and couldn't hear normally. Checked my BP/pulse and found out my BP was really low and my pulse was really high. I had been diagnosed with sinus tachycardia years early but this much and low BP was new. Still trying to get the official diagnosis. Cardio just said eat more salt and drink more water but didn't officially diagnose.
My feet don't turn purple but they do get cold sometimes ur symptoms sound almost exactly like mine, I was told by my cardiologist that I've got an abnormally fast heart rate and to increase my salt intake but it's not helping I still get the really fast heart rate and it can be a PITA sometimes
I started noticing that something is wrong with me years ago. I’ve been diagnosed with anxiety many times but I started realizing that it might be pots. My heat tolerance was getting worse and worse, and it got so bad that I moved to Norway 😂 I am thinking about leaving even more up north as heat flares up my symptoms 🥲
Hello! Two years ago I was diagnosed with anxiety disorder. At the beginning, I couldn't even standing or walking without feeling bad, my heart beet to fast and I feel dizzy. I started to go to therapy and all get better, sometimes when I am standing too much time I feel out of breath and with my heart beating fast, other times I feel nothing. It's happens with exercise, I feel good doing it but then is really difficult for me...I don't know what is happening to me, I want to tell my mother but she has spent a lot of money while we were trying to figure it out what was happening to me...also in my county is very expensive
Mast cell activation. Would explain onset of allergies with other symptoms. Also HPA axis.
Dysautonomia is an umbrella term for 15 different types of illness which includes POTS. Some types of dysautonomia are very difficult to diagnose and that is because it is so insidious. I was treated by so many specialists, for so many symptoms until a cardiologist became involved and referred me to a dysautonomia specialist. There is Pure Autonomic Failure, Multi System Atrophy so if you think you have symptoms please see a specialist!
I faint my heart rate was 108 resting got up to go to the bathroom spiked to 184 I’ve also have had it drop to 20 my legs are very often like purple and hurt I have ibs I have often had to craw to use the bathroom because I can’t stand it’s to much I get way to dizzy today been in bed all day trying to not faint if I stand I start to but still no dignosis had a positive tilt test also
Not sure if I have pots but lots of the time if I stand for too long one of my legs will “lock up” and hurts sooo bad that I need to sit down, and I’ve never been able to squat/bend down without being extremely dizzy when I stand back up straight. I did have a heart surgery when I was a baby to repair a valve. Should I get tested for POTs, or are these things normal?
ayy thank you for this video! My aunt hots POTS and i’ve talked to her multiple times about it with her and my grandma. both agreed I might have it.
I dont get severe symptoms or anything, I do get fatigue definitely though. Mostly when I dont eat enough that I usually do i get very light headed, also when i stand up most the time. i go through phases/episodes where My hands and feet get PAINFULLY cold, i cant warm them up no matter how hard i try, my friends have told me my hands are painfully freezing lol they’re quite pale from the rest of my body. Heat too! Im sensitive to heat, i’ll get random hot flashes that then combine with sudden tiredness. and i believe acid reflux is one too im not sure, i get that badly and it sucks ass. Sorry for the long rant of a comment haha my parents dont listen to me about anything nor take it seriously. Is all of what i’ve listed heavily signs of POTS? I’m trying to get as much info as possible!
Hi Aimee, I had similar situations as you (my name is Lori), look into DNSR, this is a brain issue in your limbic system. Correct that and that will be huge, Annie Hopper is the creator of DNRS. Also, there is another program similar Gupta. You have your choice. I was diagnosed with lyme disease and mold toxicity. There is a great doctor in Wichita that I have worked with that deals with chronic illness, he has helped me huge as well. If you want his info, just reply; seriously look at the brain retraining. It is not a life coach, but exercises, huge huge benefits. Hope you try it. PS. Was also diagnosed with POTS. You can get rid of this as well.
thanks for the info!
Is getting dizzy when you stand up the main symptom? Because I have almost everything else except for that
Fibro would be a comorbidity. There is alot of overlap which sorta makes sense because they are both issues thought to be caused by issues with the nervous system
I have had the symptoms of pots CFS and fibro for years. No diagnosis yet. POTS wise I have alot of the dizziness, nausea, exercise intolerance, migraines and headaches, vision problems, pain in legs from standing too long. I fainted when I was 8. All of a sudden my vision got covered in like coloured tv snow and I was out for a few seconds. When to the er and nothing. Went to a specialist. They didn't even look at me just said I guess you have fainting spells and left. I had a few almost faints, and fainted again when I was 18. Luckily I can tell the difference between fainting spells and dizzy spells. The fatigue, allergies, fibro, and cold intolerance came later. I've always had heat intolerance and migraines. I'm sick of doctors acting like it's not a problem just because I don't faint often so I bought a heart rate monitor. On a good day I was 70 lying down 120 standing. I'm gonna gather some data on my digestive issues and possible fibro too and try to finally get my family doctor to pay attention. If that doesn't work I'm old enough to get my own doctor now.
Also thanks for sharing good info. I can't count how many youtubers and even some of their doctors think you have to faint or it's a blood pressure problem
Do you happen to have hyperflexible joints as well? That was the case for me, and it turned out that that I have hypermobile type Ehlers Danlos syndrome.
Anyone else have pots their whole life, but either ignored symptoms or thought it was normal? Apparently not everyone can feel their heartbeat in every cell of their bodies when they stand or lay down. Lol who knew? I got diagnosed recently. My physical therapist told me he couldn't diagnose me but that I had this and to talk to a cardiologist. I was supposed to have been treated for vertigo (dizziness I have had forever but ignored). I think the biggest problem was whenever I would list more than 3 symptoms, I would be treated like a hypochondriac. And I have been told by drs "I think you are making correlations between things that aren't correlated" -- fast forward to pots and all these symptoms are correlated. Drs has to stop making people feel like they are making up their symptoms. At least that has been my experience. Now that I'm an adult, I am taken much more seriously.
I have heard that there is a huge association with sibo and pots. Has to do with the Vegas nerve
Hey I think I may have pots. When I stand up sometimes I get really dizziness and even start to see everything go black but have never fainted because I feel like I can control myself before I faint. In that moment I also feel this intense pressure in my head along with a hard time breathing. I give it a couple seconds and I usually am able to regain control. This happens especially when I am using the bathroom and get up or I am lying down on the bed and get up. I also have digestive issues, I have a lot of heart burn and bleaching my gi doctor thinks I may have Gastroparesis. So I don’t know if this could be related to pots I just know that I had this for a long time and because lab results were normal I never really considered to be a possibility.
Do you also happen to have hyperflexible joints? Any of the 13 different types of Ehlers Danlos syndrome can cause POTS, gastroparesis, and many other issues. Often the dysautonomia and digestive issues are noticed first.
Has your doctor tried you on Mestinon? It can treat both POTS/dysautonomia and digestive dysmotility issues such as gastroparesis. It does this by stimulating the vagus nerve, which is involved in digestion and blood pressure regulation. Mestinon has fixed my POTS and gastroparesis.
When you say treating your pots, please can you share what you take? I am one of the crawl to the bathroom types & would love to discover an effective treatment! Many thanks for your inspiring videos xx
Yes. So I actually have a video on my channel called "No Drug POTS treatment" but it was one of my first videos so ignore the crappy quality lol. I'll be making a new one of treatment for POTS soon!
Me too, I can only crawl. I can’t stand more than 1 min 😥
If you end up having to try medications; the most popular POTS medications are beta blockers, Clonidine, Guanfacine, Ivabradine, or Mestinon. I reacted adversely to beta blockers, so trying medications does have risks. However, my POTS was eliminated with Mestinon and a small nightly dose of Clonidine.
I'm so sorry for you young people who have this debilitating disease. Mine could be regulated by beta blockers at this stage. Not anymore, they actually made me sicker in the end. But I'm almost 50. It's sad seeing people with EDS and POTS die so young.
So true but we wouldn't be dieing so young if doctors would believe us you wouldn't believe how many doctors put this off saying "oh it's just anxiety" It gets really annoying but I get that it's because it's basically a new disorder the first time it's been seen was 30 years ago
@@mikaelathompson Oh believe me, I know exactly what you mean. I got the betablockers 20 years ago only because 24h Holter showed 'that the system had gone out of wack' according to the FEMALE doctor. There is no treatment for POTS in my country still and I am still being offered anxiety medication even, if I've gone through full psychiatric tests that came out clean. With the amount of cortisol in my blood all the time, what that does to me is wanting to punch the assholes in the face.
hey, so December 2018 I started to feel dizzy and I got rushed to hospital as my heart rate increased loads as I stood up , they did some tests and they said it was pots, when it got to the summer I wasn’t as dizzy as much and the heart palpitations were not as regular. However when I started school again the dizziness came back and it was just about manageable but the heart palpitations came at different points even when sitting up, I can’t do exercise anymore because it tires me out so much and I’ve noticed a lot of brain fog especially when I’m trying to do school work, my feet are always cold and I get a lot of headaches and shakes, however when I’ve been to the doctors since all it started again they said it wasn’t pots and it was anxiety so I’m confused and I spend most of the time in bed x
Hey! So sorry you are dealing with this! It is SO hard to live with! I just posted a video about how I do daily chores with POTS and I have a video about how I exercise with orthostatic intolerance that may help you as well! I totally understand that anxiety. I get that too! I really think you have POTS. that's what it sounds like to me, however I am not a doctor so take that with a grain of salt. POTS is hard to diagnosis. but I would just treat yourself as if you have it because treatment is totally natural. :) YOU GOT THIS GIRL. Feel free to reach out to me on IG @aimee_esther if you need more help! :)
Aimee Esther thank you so much I will check the video out! x
We were told my son might have dysautonomia pots. He has seen 6 doctors and has been misdiagnosed multiple times now. It started with double vision, went onto dizziness, headache, nausea, severe fatigue, muscle pain and weakness, chest pain, sensitivity to light and sounds, heat, gets cold on 80 degree weather. We were told it is not an autoimmune and that it might be dysautonomia. He gets dizzy after eating or is thirsty, has a hard time going on hikes or walking for a long time. He has a lot of anxiety with it all. Before he was treated with a medication from the naturopath he would have episodes where he couldn't walk and he would curl up on the floor and just be dizzy and sick.
Have they screened him for connective tissue disorders?
Hello! I do not expect a reply, but if you have the time I would really appreciate it. I have so many pots symptoms such as weakness, fatigue, concentration issues, IBS, Brain fog, Purple cold feet, heat sensitive, palpitations, shortness of breath etc and I get very dizzy and faint and lose my vision when I stand or crouch or bend over, however, my doctors won’t diagnose me because I only have an increase of 27 bpm when standing. I’m finding daily life harder and harder and I feel I’m not being taken seriously. What is your opinion?
I am also convinced I have hEDS as I have all symptoms associated with it and they are obviously closely linked. My mum has fibromyalgia. Thank you x
Hi new friend! Short answer...just treat yourself for those conditions as if you have them. Theres tons of natural things you can do for them, especially POTS! Just see if the treatment works!
Long answer.... every wednesday i answer all the questions i get in a live Q+A. So in 1.5 hours im going live on YT to answer and will answer your question. Replay will be on my channel! 😊
Aimee Esther awesome!!! I will probably be asleep then as it’s much later where I am.... but I will catch up tomorrow, thank you so much! I’m so happy I’ve found people like you to get second advice from so that I don’t have to do it alone 😊
Hi, I don’t know if you’ve seen a doctor yet but I was diagnosed with POTS and my heart rate only increased 28bpm! So we’re very close! However, when I measured myself at home, I had an increase of 37. Each time can be different. I’ve only come close to passing out twice, where my heart rate would’ve been much faster. My doctor called those “episodes.” So you could still have it even if you’re not catching your episodes at the right time!
Hi beth! I know it’s been a while but how did you get you diagnoses for h EDS ? was it blood work or did you run other test?
@@vilmaelvir4805 hEDS is diagnosed by going through this simple diagnostic criteria checklist:
www.ehlers-danlos.com/heds-diagnostic-checklist/
I have POTS and most of the other symptoms mentioned, and it turned out that I do have hEDS as the root cause of it all.
Cam pots come and go? I had these symptoms for a few years and have been able to get them somewhat under control with beta blockers and stomach meds and antidepressants etc. Now I still get most of them but the extremely high heart rate doesn't happen everrhtime I stand up anymore. I can't even go grocery shopping without sweating bullets the whole time and getting extremely shaky. Shopping or doing anything else. Is it possible the beta blocker is controlling the heart rate spikes to some degree? Before beta blockers HR would be 70-80 laying and 130-150 when i stand. If I get warm or try to do anything before beta blockers it would be 190+. After beta blockers HR is typically in the 50s layong down and 90s standing. Sometimes higher, especially if im tryinf to move even a little bit. I've fainted a few times. Only diagnosis so far is inappropriate sinus tachycardia and I've been dealing with it all for almost 7 years. I have major GI issues, panic disorder, fibromyalgia, migraines...but nobody can seem to explain to me why my heart rate does the strange things it does or why I get so many palpitations. I also get the brain fog really bad. Most of the time I need my husband to help talk to people because I can't remember words and he's learned how to decode my "language"
Sibo..& Leaky gut too
I am so sick of doctors looking at me like I'm crazy.
Me too
Me, too.
I have soo many symptoms... forr 2 months i was bedridden.. it was extremely difficult, i had tachycardia and sometimes it felt like i was in a ruller coaster. But my symptoms disappeared slowly and after that i had severe lightheadedness.. i couldnt even get out of bed.. even eating food made me light it was just hell idk how to feel about all this I did my own research after no answer from drs and am 90% sure i have dysatonomia
Wow this video was 4 years ago i just learned about pots from tiktok.
these symptoms been happening to me for around a year now I’ve went to my doctor about it he said it can happen with tall ppl I’m tall and also a girl he wanted me to get blood work done and I did the results went out fine as expected but now for the past month or two it has been very bad when I have to mow my lawn I have to take like 10 breaks even though my lawn is not big at I feel a very sharp pain in my chest area and it’s hard to breath my heart will also go very fast and well im laying down to getting up it’s gotten way worse to no matter if I try to get up slow I still feel that I’m gonna faint I always feel exhausted when I’m doing nothing I feel very tired all the time too feeling that I need to close my eyes all the time I do want to go to my doctor again he told me if you still feel like this in a few months come back but I don’t know I feel he will just think I’m lazy btw I’m not over weight at all I’m 5’11 and 130 pound my diet is fairly good so yeah idk
I had never heard of POTS before.... I’m trying to find out why I wake up with my right thigh numb, I sleep on my back. It’s been a month, I’m going to see my doctor about it, because I have other weird symptoms:
Knuckle pain
Loose stool ( I used to be constipated)
Tired all the time
Restless feet
My skin is sensitive ( nothing extreme)
I get dizzy easily, when I stand up, if I bend over
Migraine
Tension headaches
My nose is always clogged (I think allergies)
My neck hurts
My back hurts
All over body ache like flu
Brain fog, I forget where I was going
Light sleeper
Frequent pee
🙀 so much
Oh and constant tummy ache 😖
That is so strange! Sounds so similar to POTS though! Its a problem with blood circulation, and can cause all kinds of wacky symptoms. You should check out dysautonmiainternational.org . They have lots of good info on dysautonomia and POTS! I sure hope you find answers to ypur problems!!! Its so hard. Ive been there before!!
Aimee Esther thank you!
@@wakeupstylellc Do you happen to have hyperflexible joints as well? If so, that could point to one of the 13 different types of Ehlers Danlos syndrome.
No sibbo for me but all the other symptoms. My blood pressure drops 14mm I get syncope with convulsions.
I was noticing a couple years ago I can't take heat for a long time my legs and my body will feel heavy My legs will feel shaky and weak and it can last for a few hours also notice I can feel my heartbeat especially when I lay down also I can lay in bed or stand up from sitting in a chair I will feel very dizzy for a few seconds I deal with constipation bloating belching digestive problems and I found out I have acid reflux gerd shortness of breath chest heaviness it seems like my body is sensitive to sounds touch and feel like I have a nerve condition and sensitive to light I have muscle twitching that cause my legs to feel weak I wake up sweating sometimes or hard time falling asleep or staying asleep wake up to heart racing feels like I'm having a anxiety attack or about to have one sometimes I feel like my heart is beating too fast I can have the heat on and undercover but my feet still feels cold I can't take sunlight on my eyes I will get a headache I also noticed that I can't take life at home for some reason when I'm under too much light it makes me feel nauseated or my body feels jittery I can't take too much heat I feel very woozy even just going to the bathroom