I have POTS and I want to thank you for putting this out. I am going to share this with my family and friends. They really don't understand it at all. Sometimes I don't think that I understand it. I am in an area of Canada that the "specialist" said "what does it matter". So it is super tough. I am just trying to suffer through it. It really is so miserable. I have had it for 13 years now, I am so tired of it, everyday being sick...
So sorry to learn about your struggle to get appropriate care, and for 13 years! I'm in Canada too and having difficulty even getting a diagnosis. It began for me after a really bad flu in Dec. 2019; I had a cough for 6 months after with extreme fatigue. My symptoms appeared gradually over the next couple of years. I started going to the hospital when I had heart palpitations and fainted. They all focus on individual symptoms. I've seen a ophthalmologist, gastroenterologist and cardiologist, but no diagnosis. Who gave you the diagnosis? Was it your GP? Hope you are doing okay.
@@triciat2855 I am sorry to hear that, Tricia. For me, I was so sick so much. I couldn't walk, I would pass out, I would crawl on my hands and knee's to the bathroom. I could NOT put my head upright at all. Finally my mom had enough, and called 911. The EMS guys were such jerks. They took my bp while I was laying down, and it was okay. The guy went on a tangent saying that his BP is worst because he has to deal with people like me. They did not want to take me in. My mom insisted. They made me walk, the one guy had a bit less hatred than the other one and he held my arm when I stumbling around. Then when I got to the hospital, there was an internist there who was very bored, he just graduated from it. They did tests, and he checked me over. When he had me sit up, he couldn't believe what my heart was doing. He had me on a heart monitor. Anyway, he was researching what I had. The ems guys kept on coming in, and making jokes about me faking it, and wanting drugs, and just horrible stuff (I was in a bed in an observation part that is right beside the main desk). Anyway, finally the doctor turned to them, and yelled at them that there is indeed something seriously wrong with me, and to shut up if they don't have anything helpful to say. They then left with their tail between their legs. Anyway, by early morning he was able to diagnose me. Unfortunately he was (I can't remember the name of it) but they travel from hospital to hospital. So I never got to see him again. It was a HUGE miracle to meet him. He told me that he might not ever see someone with this again, but he said that he is lucky because now he knows what to look for. He thanked me for coming in and that he got to learn something new. Such a great doctor, I wish that he lived here. So then when I went into the hospital another time the regular internist was here. He said "well, it doesn't matter why you got it, it will never change", and "why bother searching to see what else you have, nothing will matter, a name doesn't help anything". So he refuses to see me, so I only have a gp who has no idea what to do, but to throw medications and see if they shut me up. He will not refer me to any other doctors, I am SK, we don't have my specialists here, and they said that I saw a specialist once and they refuse to see me. I shut up because I really can't handle talking about it over and over. They really don't care. But they do say that MAID would help.... So now my family is telling me to not say anything so that they don't do it.
It matters bc you need to know and understand it so you can do what you can to live your best life. I'm a nurse, I'm researching bc I know nothing about it, but I am being tested now. I like to take charge of my health and do research to know what works best for me. Your Dr is ignorant. Maybe you can do teleheath with someone that knows more than that dude
I was diagnosed with POTS 14 yrs ago. I had a gastric bleed and lost 2/3 of my blood volume at the age of 40. My life changed completely that day. Every symptoms Summer talks about I have to the extreme. After 5 years I was no longer able to work and it still took me 3 yrs to get disability. Went before a judge and within minutes he said I was disabled. I suffer from symptoms everyday. Insomnia, pain, sweating, fatigue, blood pooling are some of my worst. I also was diagnosed with inflammatory disorders at the same time. When given the transfusion from my bleed out the blood cause inflammation that has never been regulated. When someone looks normal but tells you there are serious problems I understand. I look normal on the outside but suffer daily on the inside.
Boy, I know how that feels! I lost my teaching career due to chronic illnesses related to toxins my body couldn’t handle anymore. The judge immediately granted me disability as well. I hope you’re doing ok. I live alone and it’s so hard to take care of paperwork and other things, I find. 🩷🙏
What kind of doctors can help with EDS and pots? I have every symptom for both but whenever I try to ask my doctors for help, they just give me this blank stare and don’t do or answer anything. Everything keeps getting worse. I was always a super limber kid with high anxiety and stomach issues, but just thought it was me. But now I keep getting more and more debilitating symptoms and am at a loss what to do. I’m in my 30s now and I’d never even heard of EDS until 2 years ago.
I could’ve written this. I became very ill after having Epstein-Barr, Mono in 2015. I turned 40 in 2017 and I thought Mono was coming back but I tested negative. I’ve had severe Dysautonomia ever since. It took four years to get a diagnosis. Three more years, trying to get disability. I was granted disability finally this year. I just turned 47. I have all the symptoms she mentions to extreme. It has been so hard to help my family understand what is going on with me. I also have RA, and hEDS
@@JescaPilar it is very difficult to find doctors who are educated on EDS. I see a rheumatologist. There are no specialists near me for POTS, I saw TCI. They had no idea what was going on. But they did diagnose me with POTS from atilt table test. They gave me no information to expect from the diagnosis. I had to do a lot of investigating on my own and looking up different medication’s that have been helpful for some people and suggesting those to my doctor to try. The blank stares are infuriating. don’t give up. There is a large support group here.
Thank you for this video. I was officially diagnosed today, the moment she says “come on brain, words, words” that is my whole life explained In one sentence
Found this video after having a daughter that had 2 years before her POTS diagnosed. We lost her after her second baby to heart failure- not POTS related. But will never forget what she /we went through trying to get a diagnosis…. After having multiple antidepressants thrown at her.. it was a horrible few years. Finally got money together and got her to Mayo Clinic and paying cash- she was diagnosed. Now with Long Covid- this is becoming more prevalent. Each patient needs to be properly diagnosed !
Why has it taken me so long to find this video? Thank you so much for sharing this. It’s been over 20 years since I was diagnosed with POTS and this has to be one of the best videos I’ve seen to describe all of the symptoms and how much they can and do change throughout the day. I don’t want to list myself on the severe sign of the condition, but I unfortunately faint on a regular basis due to my heart rate and blood pressure. I don’t know how many times I’ve ended up in A&E via ambulance due to a fainting episode. Unfortunately today was one of them when my heart rate hit a high of 182bpm & then dropped to 52bpm, causing another faint. I’ve learned to take every day at a time & not plan anything, as I can never anticipate when an episode it gonna happen. I am lucky to have a good support system around me to help me. Thank you again for this video. x
I have all of these symptoms too. It only took the doctors 30 years to diagnose me. I was just labeled an anxiety patient and it was very disheartening.
@@sufyb6432 Mine did too, that is officially that was their one-time pre-diagnosis at the psychology department. At first it was anxiety/white coat syndrome, then a hypochondriac. Once I got an emeritus professor of endocrinology to send me to be tested in a university hospital after I had started vomiting regularly and they realised during sleep tests that my system was screwed - and particularly after COVID - they do not call me a hypocondriac anymore. But I had to buy a recording oximeter to prove that my system was completely effed up even during sleep for the private endocrinologist. But for 37 years it was supposedly all in my head. (Mind you, mine was a slow-onset kind related to genetics and hypermobility (not EDS), so do not think that the more typical POTS patients where the on-set is sudden can deal with this disease for 37 years.)
“Exhausted to the bone” literally just made me teary eyed. I’ve never heard it phrased this way and it very well explains how heavy and weak my entire body feels on a day to day basis. Getting anything done is becoming a chronic issue. Thank you for this. I may have to get a tilt table test.
Your video made me emotional because described my life right now. I had an appointment with my primary doctor today and hesitated to mention POTS. Instead she prescribed me some iron (because I’m anemic) and a follow up in a month. Hope I can bring that up to her next time and she helps me with a diagnosis.
Thank you so much as I have had most symptoms for the last year & it’s has finally been confirmed I have Tachycardia. I would have some doctors looks at me as if I was nuts & I believe that maybe because not a lot know about POTS. Anyway going to see a true specialist & it will be confirmed then.
i also have POTS and i didnt even know about the beir spots! i have them and i was just wondering about it the other day. my jaw dropped when you mentioned them and i was like "THATS WHAT THEY ARE??"
Wow! I need to find out more about this. I went to the ER several months ago with many of these issues, post covid. They said I now have tachycardia with long covid. I told them I just felt woozy headed, weak, tired, nauseated and my ibs was out of control. I felt crazy! Thank God this popped up in my feed!
I love that you are putting all of this out there for people to see. It helps so much to feel heard. My 21 year old has just been diagnosed, (after 11 years of being told there is nothing we can do for you). We finally found a doctor that said yes there is something wrong and I can hopefully help you. She is on the severe side of this illness and passes out a lot and suffers 24/7 migraines, and has all of the symptoms that you talk about. I have a milder case and get a lot of the symptoms but I can still function. Thank you for all that you do to promote awareness of this illness.
Thank you for sharing that with me. I hope you and your daughter see many better symptom days ahead. Promise I’ll do what I can to help the cause with my skillset. ❤️🩹
@@summerdashenews Good on YOU Summer ; please make sure you do. My friend has had POTS for years and does not know it , because they used medications to mask her symptoms. She is gradually getting worse , and no one will ever figure it out. Very difficult situation.
Thank you, Summer! I’m 44 and have suffered from hyperhidrosis and heart palpitations my whole life. After being told it was “just anxiety” and then later having more and more of the same symptoms you mentioned here, I finally decided to find out what’s really been going on. POTS diagnosis provided those “well this makes so much sense” kind of answers, but it also brought a lot of grief. 😔
The worst part is how many doctors don’t understand this “illness.” My wife has been dealing with (more like suffering from) this for many years (over 10) and was just diagnosed with POTS this year. They have a tendency to think the patient is just overreacting or having psychological problems. And it’s really tough on the spouses of those who suffer from this as well. Thank you for making this video and hopefully at some point medical science can come up with some better solutions to help those who have POTS.
Thanks for sharing! This disease has disabled me severely! I have horrible adrenal malfunctioning and can barely function. No one talks about how horrible this can be.
BIER SPOTS?! That's what this is called? I am being seen for possible POTS next week and I have always wondered what the heck these little spots are on my arms that I get sometimes. WOW. Thank you for providing this video. I related so much and learned a ton! xoxo
This is so well crafted, factually on point, and I love the moments of humor. Three of my kids have POTS and between them all, we cover most of the symptoms described. 😵💫 POTS is a spectrum illness and they all present differently, exactly as Summer explains near the end. Thank you Summer! This is important work you’re doing.
oh my god thank you!!!!! I've never related more to something. this is definitely what i have. i'm 25 and been trying to figure this out for so long, thinking something might be horribly wrong with me and thats brought on so many mental hurdles. I finally have closure because of you right now. i experience all but 1 of these daily
I had to quit my job it was so bad. I couldn’t stand without feeling like I was going to pass out. Now I found a remote job and am doing what I can to help ease my symptoms w beta blockers compression socks and adding salt to my diet. Thanks for sharing!
I have every single one of these symptoms. Thank you for this video. Useful to show family and friends. I’m having a lot of trouble surviving in the workforce but don’t have money for a lawyer and feel like I’ll never get approved for disability. It feels so hopeless.
This is the BEST video regarding Pots! EXCELLENT! You described everything I am experiencing. It has destroyed my life! Can you do a follow up video of what treatments are available? You're empathic which is rare now a days. Don't let the reptile brain turds effect you. You're wonderful! Thank you for this informative video! ⚘🦋🌷🦋🌞
LOL Your “reptile brain turds” comment made me laugh. I will have more videos up soon. I love the treatment idea! I’m in the middle of a move and job change, so it may take me a few months, but I’m working on more videos! So grateful to be helpful in any way.
@@summerdashenews Thank you for replying, so kind of you! 🙏 No rush re: a video about treatment. I will wait. Especially since I've already spent the last 4 years suffering with POTS and was only recently diagnosed with it. The worst thing about it is that I easily feel faint when going up the stairs, which has forced me to be house bound (I'm afraid of going up the stairs after I return home from being outside). Plus, the EXTREME weakness in my legs, hence I can no longer travel, which I used to do a lot and was the joy of my life! 🏛✈🛩🛫🧳 Thanks again! 🌷🦋🌻⚘🌼🌞🌷
Great info! I just wanted to add tremors :) i have bad tremors sometimes when I have my episodes. Thanks so much for this! I was misdiagnosed for a year and a half with just anxiety…
Advocate for yourself as some docs don't seem to know or don't believe it still...we had to ask for test after test and referral to cardiologist and neurologist then finally got a diagnosis for my kiddo, some take years I've heard so keep going! You know you best so listen to your body.
Hello My son has all these symptoms that you described. He's been suffering since he was a teenager. Heart doctors keep dismissing him even though the table test says otherwise. How can I make him feel better? Is there medication?
@@melissajones9675 Hi Melissa Get a blood pressure machine and measure it along with heart rate , when he’s lying down , sitting and standing , and try to observe the changes. And show him how it differs from a normal person.
@@melissajones9675 The medicine is salty water , and regular meals every 3 to 4 hours. There are lots of helpful videos. Pharmaceutical drugs ONLY MASK THE PROBLEMS and it just gets worse. Not to mention the side effects .
@@melissajones9675 The medicine is salty water , and regular meals every 3 to 4 hours. There are lots of helpful videos. Pharmaceutical drugs ONLY MASK THE PROBLEMS and it just gets worse. Not to mention the side
Thank you for your education I was recently diagnosed with Pots and making my family and friends believe what is going on has been a challenge. This video will make it easy for me to educate them.
This is a first. You named all of the symptoms I have. So many people only focus on the very common symptoms. Like you I have high blood pressure as my heart rate increases and BP drops when standing and gets high when sitting while my heart rate drops to normal. I’m on HBP and a beta blocker to control the tachycardia. I also have the temperature control issues where I just get hot out of the blue even if the room is cold, also urinary frequency and urgency as well as gastric urgency. My appetite is crazy. I typically get hungry in the evening but they say we’re supposed to eat more frequently. I’ve always had insomnia and now I think I’ve invented something else my sleep is so disregulated. The brain fog, trouble focusing, issues with memory, flighty feeling almost like I feel ill, dizziness, blurry vision worse on bad days, headaches, migraines, severe low back pain, neck pain, neuropathy in my feet, nausea and the overwhelming fatigue. Ugh. I really hate POTS.
@@rameshlumb4003 Still on the meds. Energy is improving but I have good and bad days. I started on a Ketogenic diet which I think much better for me. Figured out my gut issues. I was drinking a ton of water and adding too much Sucralose to sweeten the added electrolytes. The Sucralose destroyed my microbial system in my gut. I started on live fermented sauerkraut and fermented pickle brine and it’s nearly back to normal. The company has a ton of tasty products and it was worth it. Just glad I figured it out. I’m not using Sucralose anymore but if I need to it’s just a single drop. On the plus side cutting that out and on Keto I don’t need things to be so sweet anymore. I wish I could say my other symptoms are gone but alas no. It’s an autonomic nervous system condition which affects a lot of different things and although I’m better than most not good as some and it’s a struggle. After I eat my body temperature regulation goes haywire. My body temperature is normal but I begin to sweat and feel overheated. It’s crazy. Trying to get into a program at a neurology clinic to see if they can help. I really would like to beat this 100%. Thanks for your comment. I hope you’re doing ok and not suffering with POTS or any other issues.
@@jaeshasway my friend I m taking metapralol succinate 75 mg and ivabradine for fast heart rate feel low energy sym.ur low energy sym improve my friend or not please answer
Thank you for this information. I used to be very active, but lately I can't walk very far before my heart rate spikes. Uphill and stairs are especially difficult. My EKG and bloodwork all came out normal, so no I'm looking at POTS as a possible diagnosis. Unfortunately I have no insurance so it will be difficult to see a bunch of different specialists. Videos like this are very useful for people like me who can't get a diagnosis.
What age are you? Are you sure you do not have possible slow arterial blockage going on? As in, not a heart attack, but lower-level tightening of arteries? Have you tried doing other type of exercise than walking upright? Basic deconditioning should also be considered, particularly if you have been sick lately. Depending on the severity of your symptoms and the level of fatigue (is it only related to exercise (as in walking or climbing stares, because that can be just because of deconditioning or a post-sickness symptom). -- I'm not saying this to diminish your symptoms, but considering that physical fatigue over 6 months is a diagnostic criteria for both POTS and ME/CFS. In my case, the fatigue was literally not being able to walk to the bathroom, because it felt like my muscle cells were dying of a lack of oxygen on the way and my heart rate would go up and down together with my blood pressure. In the end I started and am still vomiting after 8 years. Yet at the same time my sister was really worried about not being able to climb up six floors without losing her breath and seeing a doctor about it (at her age I could not take a three steps without considering my ability to do so in that instant). And no offense to my sister, given I know that's how my POTS started too... When I was trying to rule out diseases and determine what kind of a specialist I should see with my really really limited funds (because I was not able to work at that point, needless to say) I found some of the more precise symptom checkers helpful. But DO NOT USE THOSE if you are in any way a hypochondriac / or have an anxiety cell in your brain. I could use them to say 'well, that's not what I have' and rule out cancers or other more serious diseases. And it helped me to understand that I should see an endocrinologist because steady examinations by cardiologist over decades had not brought me any good. When I visited the endocrinologists I did a chart of all the symptoms I had or had had and what symptoms had started and ended/continued and when. Also, an EKG does not say anything about POTS, however depending on the (hour of the) day walking can end up in exhaustion or feeling much better. My fitness biking test came out better than average and yet I vomited everything. I do not even know where all that vomit came from, frankly. That is, POTS is diagnosed by a tilt-table or stand-up 10 mins test at home, not by an EKG. A really important thing to consider in your diagnoses is whether you had a sudden on-set of symptoms or a slow one. Mine was slow, which is why it's likely to be genetic (and my sister and nephew keep showing symptoms too) and is not a typical POTS story. Typically POTS comes after a viral disease, a situation in which one loses blood or is subject to shock and extreme stress. Given the underlying cause one can actually have ME/CFS with POTS (viral onset), a slowly progressing genetic hypermobility induced POTS (EDS etc.), a stress/trauma induced POTS or no POTS at all and rather another condition. What I was tested for were some rare muscle cell abnormalities, cardiovascular abnormalities and psychiatric illness. In order to diagnose POTS, or to treat it, the doctors will need to typically rule out other diseases and the treatment of POTS caused by different underlying conditions can be quite different. Sorry if this was long and I hope I did not burden you with my story too much. I was trying to give you some pointers in how to manage your own sense of illness. I had to basically study a minor in human physiology before I could get help for this condition. Well, there is no help really, but at least I now know what causes my symptoms and how to try to control them somewhat. I wish you good luck on your journey. If your heart rate was elevated buy an oximeter and any case a blood pressure monitor would be a good investment. If you do not have joint and muscle pains, it's unlikely to be anything autoimmune. Never forget underlying depression as a cause of deconditioning and hormonal imbalances. Any self-diagnosis of hormonal imbalances is highly dangerous. In order to take any irregular amount of any supplement it has to come with a side dish of supporting vitamins & minerals and can never be taken on without full medical literature research, because most of it is placebo and if not, it can be really harmful if not done right. I hope this helped. If you want to talk, reply with the @ name, and I'll try to pick it up. All the best.
I have POTS and fibromyalgia and it suxs so much. Thank you for doing this video i am going to get friends to watch it. To see some of what i go throughout a daily. Again thanks and take care of yourself 🇳🇿
This is so much of my daughter, who has POTS. She suffered a TBI 4 months ago and this sent her symptoms being much, much worse. I'm so sorry you have to deal with this too. Thanks for speaking loudly about all of this. ❤️
thank you for this. i’m actually in the process of getting a doctors appointment because of my heart rate and dizziness. this video has made me realise how many symptoms i actually fall into, i’ve made a list of all of these so i do g miss any at the appointment (brain fog is one of them)
So interesting: I've had ME CFS for 28 years and many of the symptoms are the same and I also have a few more. I've always been sluggish in the morning however 3 years ago it got drastically worse and I collapsed in my kitchen. I've been to a doctor because I thought I possibly had POTS and was diagnosed with anxiety which about 6 months later I did have because I was terrified of passing out. I had new symptoms - unable to stand in the morning - takes about 2.5 - 3 hours to wear off, blurry vision, brain fog worse and light headed; I already had a weird irregular heartbeat however it got worse. 3 years later and I've done the NASA Tilt Test at home and I definitely seems to have POTS and my doctor still dismisses it as anxiety 😮.
I was wondering what a home NASA Tilt Test is, I have never heard of it? I was diagnosed by a "poor man's tilt table test". Thank God for a brand new specialist who was working in ER on a very boring night shift. He found out that I had POTS.
@@christinagrant3252 Yes I used an oximeter and a BP cuff - I was so fixated on the HR increasing that I didn't realise my BP was falling drastically. I'm in the UK and doctors don't like when we do our own tests. Although I have POTS symptoms it's because of the BP drop.
I had to struggle with this for over two years. Dismissive doctors are the bane of my existence. My recommendation (that may be a little difficult if you live in the US) make an appointment with a cardiologist directly, they may not usually believe you at first, but they will make you do to the tilt test, and that's how I finally got my diagnosis.
I am also in the UK and it took many years for them to take me seriously. They finally referred me to a neurologist when I started asking about Lyme disease and the neurologist told me about POTS and then I told them at the doctors to give me a poor mans tilt table test and after they did they referred me to a cardiologist. Well it was a student doctor actually who didn’t refer me properly so I waited for 10 months thinking I was on the waiting list but I wasn’t so then I had to wait another 10 months but I finally had tests done ordered by the cardiologist and now I’m waiting for results. They really should refer you to cardiology. Tell them you are experiencing syncope or pre-syncope maybe. In the morning and when you stand-up. I was referred to the cardiologist with “syncope”. They need to take that seriously. I also have ME/CFS and they definitely dont take fatigue seriously as you will know but they need to take fainting/passing out seriously. I have never fainted because I sit/lie down before I do.
Thank you for this! It can vary patient to patient and hour to hour. It's such a dynamic disability that it is hard for people to understand sometimes I think.
Omg, I have POTS AND Gastroparesis but I’ve always focused on the GP as the root of all my issues because it was most severe and pronounced. I never considered that my POTS could be the cause so I’ve not treated it or focused on it. Thanks for that information, it’s making me re-think my approach to my chronic illness.
Having POTS can be so frustrating. You can never tell what symptoms are from POTS or other undiagnosed issue. When I got COVID I literally had no idea. I was just constantly tired, it wasn’t until my mum made me take a test did I found out it wasn’t just POTS.
well said, summer! i remember seeing an article about your experience some time ago. i’m happy to see that you’re on youtube, so that more people who are undiagnosed or not properly treated can gain knowledge and confidence. i’m off to look at your other videos. thanks, and many good days to you!☀️
ive been having issues since i was about 14, im 25 now, i always thought i had siezures because i would black out and people woule say when i black out it looks as tho the lights are on but no ones home. My last "Siezure" was this past august and i finally went to a brain specialist, im on medication at this time for anti convultion in case its epilepsy but Ive been experiencing ALL the syptoms that have been listed in this video. I've always have had extreme brain fog, my heart beats very fast, my body struggles to regulate tempature, my memory is very terrible, I have awful hip and back pains, but what i also have most is limb twitching, that one really tampers with my daily life. Ive been researching POTS because epilepsy doesnt seems right, it doesnt line up with anything, the only one that does is Abscence siezures, they seem plausable but POTS feels spot on because my blackouts happen after i stand up or sit down fast, I have Bier Spots as well and have had them since i can remember, my mother has them as well so it may just be poor circulation [?]. Im going to talk to my doctor about this in December but this is a really eye opening thing for me, thank you for making this video!
This video is an excellent description of daily life symptoms with POTS. The video is easy enough for someone first learning about POTS, as well as comprehensive enough, that it validates those living with it. Every day with POTS is so very different, and you did a great job explaining this. Thanks for sharing!
I come a cross this Vid and it sounds like how I feel every day and its a full time battle thank you for shedding light on something that I had no idea was a real thing or that so many people have it and may not know they have it think you for sharing your knowledge.
Good luck, sis! I can't say that diagnosis will help much except in terms of releasing the anxiety of not knowing what's wrong and possibly getting a provable reason to our employers, family and friends explaining what's wrong. Sorry. I do not mean to disappoint you. Just saying that if you are down this road, this road is about mitigation. I went through the huge disappointment of not being able to be cured. It was not nice.
I appreciate your video, and thank you for your efforts. I've tried all kinds of work arounds for my POTS. It changes so much and can be so variable from one moment to the next, that I can't track what works and what doesn't. I was physically very active before the COVID-19 infections and seemed to recover somewhat after a year. But, it's back to square one since January.
Thank you so much for the work you’re doing to raise awareness!! As a fellow POTSie, I stand with you (figuratively, of course-gravity hates my body). 😉
You can sit or lie down by my side any time! 🤪 Thank you for being here. Appreciate the support. I don’t make any difference without all of you helping spread the message. Thank you for being part of the team effort. ❤️🩹
Thanks for sharing this video and raising awareness. I have heard about POTS from other people on UA-cam. I have very mild symptoms that crossed my mind to wonder though they were never diagnosed if they could be related to it or similar economic disfunction. What are the reasons I didn’t think so with because most of the people I heard discussing pods had the form wear their blood pressure dropped when their heart rate rose so it’s interest and to me that you mention your blood pressure rising because that’s more common for me.
My hr increases and goes down when placed in supine position at 99-70% which is significantly high . The sweating profusely and drenching my entire body is so annoying, the daily life is depressing and so prayers to all of us who deal with this daily I wouldn’t wish it on my worst enemy. Hugs everyone bring awareness so others don’t have to to suffer as long as you may have not realizing what happened to your body. It may also be why I have severe small fiber Polyneuropathy as well. Does anyone else have this.I appreciate you sharing so we aren’t alone and yet wish we were bc it’s so horrible and debilitating.
(05:24) We are grateful for you Summer, the best face we can put on POTS is an articulate and talented journalist like you. You inspire us. God I hate blood pooling, and all my other symptoms. It's hard to not feel frustrated. Oh wow, okay another thing the doctors have been stumped by? My left arm, when I walk, turns blue like that and, with the beir spots!!! Nobody has been able to explain that and they get very concerned. Me, it's just a walk in the park with a blue arm with white spots lmao Angiograms and cardiologists later, finally, a competent cardiologist diagnosed me, that lead me here, and now, I can explain to the doctor, those are bier spots. OMG Summer you rock tysm One thing I struggle with is suicidal ideation. That must be common in our cohort. It's only ideation, but it adds to the stress levels when my brain tells me that life doesn't seem worth living, not when I feel like this so much of the time. Love to ya'll.
I've been diagnosed with A-Fib but they never did the tilt table test with me. After watching this, I'm wondering if I have POTS. I've suffered from hyperhydrosis since I was 11, I get extremely dizzy, I have swelling in my feet and hands and wonderful brain fog. Oh and I can't forget the terrible fatigue. I was actually fired from a job for falling asleep while working, it's awful. Think it's time to go to a different dr. Thank you for this video, it was very informative
I had an episode yesterday (Christmas) every time I stood up I felt weak, lightheaded and a bad tremor. My heart rate won't go up much because I'm on Metoprolol and it keeps my heart rate from going up. Even when I'm working hard or trying to exercise, I do good to get my heart rate over 85 bpm. This stuff sucks. I got it after covid, it got worse after the second time of covid.
My gosh, but it's like we are all amazing warriors! I really don't know how we do it. I've got POTS, Emphysema, ME/CFS, Fibromyalgia, Hemachromatosis. I've survived an accident and head injury. I've been diagnosed with C-PTSD (alcohol, narcissism, violence, foster homes) and ADHD and it seems I'm an INFJ. AND I'm pushing 70. Yet, i can get online and read other people's stories and think, what have i got to complain about? But, when i think about another person going through what i go through, I'm not so hard on myself. I think there are a lot of heroes on this earth, its just too bad we all have to get so much rest and prefer not to keave the house if it can be avoided. Imagine if we all got miraculously well and used our life experiences and renewed energy to help the rest of the world! A gal can dream, eh?
Thanks for the content Summer. I’ve been struggling with POTS for a year now. It’s been the biggest challenge of my life. So thanks for allowing me to relate. Do you happen to have muscle weakness/Shakiness/numbness and tingling? This is the one thing that pushes me over the edge mentally.
Vitamin d3 (5,000 to 10,000 in per day) with k1 and k2, plus a good multivitamin (see Dr. Berg's channel for more suggestions) have helped me tremendously. Wish I had known about these things years ago! The insomnia never goes away for me. I was born with it. Unisom tablets and melatonin help there. Felt nauseated and ill every morning, but somehow managed to work full time for 40 years. It's a struggle, folks! Take care of yourself and ignore the haters who think you should just "get over" this horrible disease. ❤
The pupils! I am newly diagnosed (waiting to see one of the only 2 specialists within a 100 mile radius of me) and my current doctor couldn’t explain why my pupils are almost always so small! It weirds me out but I’m slowly getting used to it, and thankfully my eyes are brown so it’s not very noticeable!
I’ve never really been given an explanation for the Bier Spots, only the name and concept behind them. They’re a bit mysterious! I suppose if blood flow is impacted in POTS, a vascular anomaly like this would make sense. :)
Your video was well spoken. I need to get answers from my Doc. I will be writing down the symoptoms here and elaborate a little but I have most of them I think ?
I have been diagnosed with POTS post the Pfz covid vax. Random Tachycardia spikes, brain fog, HR unable to regulate properly during exercise, excessive sweating, mornings are hell - yep, all that and more. The injury occurred back in Nov 21 and those first 18 months were hell but over time, in a two steps forward then step to step and a half back sort of way, things are improving. I have gone from healthy endurance athlete to being thrilled that I can go up and down the stairs a few times before all the issues kick in. In training I have to be careful. I have gone from being able to do 1 hour on a rower while sustaining my HR at 180+ for sprints at the end, to now watching my HR carefully as if it gets over 140 then the crazy HR stuff will start to happen. As for the sleep side of things I can reccomend Melatonin. I recently been prescribed it again to help with the sleep side of things. The insomnia still an issue but when I do fall asleep I do have a much better sleep. That and beta blockers for the HR stuff. Welcome to Club POTS.
Thank you for this informative video. I’ve had POTS since I was a teen and I have Ehlers-Danlos Syndrome. I always thought the main symptom of POTS was blacking out, which is mine. I can feel the blood leaving my face, my lips feel numb, and my vision going black. I try to sit down immediately or at least squat so I’m not passing out completely and hitting my head. My husband knows when I’m starting to struggle and will come to me to help. My symptoms are worse with hot weather so I have to be cautious when the temperature goes up. My blood pools in the evening and if I’m on my feet a lot, for instance brushing my teeth, my feet will turn purple. I also get a bright red face at times, which may be related. I have evidence on an MRI of my brain of a TBI most likely related to POTS.
Thank you for sharing I just had been diagnosed with pots I understand more my self , but unfortunately my family being mum with kids sometimes I can't bear the fatigue and do all things by my self.
I have a question. My doctor said that POTS patients always feel heart palpitations or they always have (even sitting or resting) the sensation of the heart beating, is that right?
I've never heard of this! I have everything you've listed! I was about to just give up. I've had one thing pop up just 3 days ago. Has anyone had toes turn black? I was going to the DR tomorrow or Monday because I've had my little toe turn black and today a small rash start around it. The brain fog, forgetfulness, the oil in the eyes, the fatigue, lightheadedness, and I've recently in the past 2 weeks gotten extreme dizziness. Nausea almost all the time. This may be a chance that I may get some answers. Thank you so much for this information.
HOW did you FINALLY get diagnosed?? I've been chasing this for almost 3 years, now. I initially brought this up to my PCP but, it was never followed up. Instead, I've had EVERY GI test imaginable. Gallbladder surgery, and a gastroparesis diagnosis. I had an auto accident 26 years ago, rendering me totally disabled. PT was my saving grace until 2020, when i suffered a TIA. I believe it all stems from POTS caused by my vagus nerve being encroached. What kind of doctor finally reached your diagnosis? I'm FINALLY seeing an integrative DO, that does manipulation. He seems to be in the right track. However, IF there's another medical professional that is more capable to diagnose POTS, then i will asked to be referred. THANK YOU SO MUCH! I HAVE EVERY. SINGLE. SYMPTOM. 😢
Hi Paula, so sorry for your lengthy and difficult medical journey. An autonomics specialists is the correct doctor to see for POTS. Autonomics specialists are usually either in cardiology or neurology depending on the hospital system. Dysautonomia International has a list of doctors to find the closest near your. ❤️🩹
THANK YOU, SO MUCH! I really appreciate pointing me in the right direction. As you know, the symptoms are SO scattered. Seeing a different specialist for each thing, NOBODY gets the full picture. PCPs don't seem as capable anymore. They're there to administer antibiotics and steroids for URIs, write refills on maintenance meds, and that's about it. I will reach out to mine, and ask for a referral. She IS really good about passing me along. Thanks again. I finally have some hope. 🙏
Im working on getting a diagnosis and i relate to this so much... specially the heart rate like sometimes im not doing anything was walking and my heart rate goes over 150
If someone has POTS, in my opinion it's vital they get evaluated for CSF leak. Cerebrospinal fluid leaks can make you have secondary POTS. If that's the case then there is a cure. The POTS disappears when the leak is fixed.
@MoparGuy1625 Look into TMS/ 'mindbody syndrome' as POTS can be a big sign of that. Any autonomic nervous system dysregulation can be coming from the brain. Look up success stories on youtube of people recovering from pots using a mindbody approach.
Yes mornings are hardest. May take till 11 or noon to get the water right, the bp right the sodium...fluid to your head.. Mid back pain( extreme muscle cramping after trying to be up working ) Severe foot leg pain with cramping after trying to be up & active 4-6 hours I'm hurting ..
Summer. Thank you for your video. I am trying to get diagnosed. I am totally disabled, with almost all of those symptoms, along with depression/anxiety. So very hard to get diagnosed where I live. Can you provide what medications you take and treatments to help manage. If you are ok with listing those. Thanks so much, and bless you.
kevin - google is your friend - research. there are a few pots experts around, and more doctors are realizing that pots is a thing, but you and google, especially in a difficult area of the world, can figure this out. i’ve seen some knowledgeable and understanding doctors at “academic centers of excellence” and in small towns, but otherwise got blank stares from doctors for decades, til i figured out that i had pots, then saw a pots expert who confirmed it. it’s a difficult disease, but there are meds and lifestyle changes that can help. you can do this.
What can we do? I mean I'm 22 years old and my ECG reports mention sinus tachycardia but when i do any physical exercise my bpm goes from 76 to 110. When I walk it goes above 130. It is not normal i know that. I'm on petril 0.25 mg. But i feel dizzy when i stand for too long with high palpitations and then i sit down out of fear It is horrible
It is interesting that I have a lot of similar symptoms, but I have May Thurner's. My left iliac vein got completely crushed by my right iliac vein. So for 6 months, I had very little blood flow in my left leg until doctors finally figured it out. I had a stent put in. While my symptoms from May Thurner's are mild compared to before, I now have all the symptoms of the damage that it caused during those 6 months. The major damage I have is to my left iliac vein. From where it was crushed, all the way down to my left foot. It is one giant refluxing vein, meaning the gates in the vein that are supposed to help push blood up, are broken. So blood is going down into my leg, then struggling to get back up. It tries, but falls back down. Since it's a major vein, nothing can be done. I deal with vertigo now. It causes brain fog and short memory when it gets bad enough. I also get nauseous and lightheaded from it, and it affects my vision. I have been having a lot of blurriness and it's hard to focus. This can give me headaches to migraines. I struggle with temperature regulation. 75 degrees used to be perfect for me, but now it's way too hot. I will be drenched in sweat. Then when it gets cold, it's horrible. It mostly affects my legs and feet. They will go pale and ice cold. This is very painful. It will take me hours before I can warm them up, then it's a huge struggle to keep them warm. Compression socks, wool socks, blankets, etc. It's almost impossible to warm them up. I have always dealt with blood rushing to my head when I get up too fast, so I already slowly get up and sit as needed. This is now worse. Especially if I have been laying down for a while. I now have constipation issues. Doesn't matter how healthy I eat and exercise, my body just can't and won't go. So I'm surviving off of miralax. I do have appetite issues. I will be starving, take two bites, then I feel full. Even though I'm not and my sugar level is low. I will force myself to eat as much as possible. I am now wasting food because I can't eat all of it. Mornings are the worst for me. My body has to slowly boot up in the first few hours. There are mornings that I literally cannot bend over due to agonizing pain that can make me fall down to my hands and knees. Then the fatigue. From the horrible blood flow, chronic pain, and everything else, I'm always tired. Sometimes downright exhausted. There are days I just can't. I have to plan my day ahead and decide what to spend my energy on depending on how much energy I have that day, which can fluctuate or just drop. I have other symptoms, but these are the ones similar to what you mentioned for POTS.
Yes our pulse is way to high. None of the docs know how to diagnose this. I saw several docs in Europe and america and they all don’t know. Lots of supplements, the pink pepto. It makes sense what your saying about Autonomic NS.
My daughter has POTS and so few people understand it! Thank you for being such an amazing advocate for POTS patients!!
I’m so sorry y’all know these symptoms! I hope she has many good days ahead. ❤️🩹 I promise to keep sharing reliable info.
I don't even bother to try to explain it to my mom, so I envy your kid that you are seeking understanding. Good mom
@@summerdashenews I forget to breath....don't get a sign to breath...is that common ?
Same, new to us and learning so much!
And yes everyone is different as well as different types of POTS.
I have POTS and I want to thank you for putting this out. I am going to share this with my family and friends. They really don't understand it at all. Sometimes I don't think that I understand it. I am in an area of Canada that the "specialist" said "what does it matter". So it is super tough. I am just trying to suffer through it. It really is so miserable. I have had it for 13 years now, I am so tired of it, everyday being sick...
Ronda I am in canada too so no meds for this ?
So sorry to learn about your struggle to get appropriate care, and for 13 years! I'm in Canada too and having difficulty even getting a diagnosis. It began for me after a really bad flu in Dec. 2019; I had a cough for 6 months after with extreme fatigue. My symptoms appeared gradually over the next couple of years. I started going to the hospital when I had heart palpitations and fainted. They all focus on individual symptoms. I've seen a ophthalmologist, gastroenterologist and cardiologist, but no diagnosis. Who gave you the diagnosis? Was it your GP? Hope you are doing okay.
@@triciat2855 I am sorry to hear that, Tricia. For me, I was so sick so much. I couldn't walk, I would pass out, I would crawl on my hands and knee's to the bathroom. I could NOT put my head upright at all. Finally my mom had enough, and called 911. The EMS guys were such jerks. They took my bp while I was laying down, and it was okay. The guy went on a tangent saying that his BP is worst because he has to deal with people like me. They did not want to take me in. My mom insisted. They made me walk, the one guy had a bit less hatred than the other one and he held my arm when I stumbling around. Then when I got to the hospital, there was an internist there who was very bored, he just graduated from it. They did tests, and he checked me over. When he had me sit up, he couldn't believe what my heart was doing. He had me on a heart monitor. Anyway, he was researching what I had. The ems guys kept on coming in, and making jokes about me faking it, and wanting drugs, and just horrible stuff (I was in a bed in an observation part that is right beside the main desk). Anyway, finally the doctor turned to them, and yelled at them that there is indeed something seriously wrong with me, and to shut up if they don't have anything helpful to say. They then left with their tail between their legs. Anyway, by early morning he was able to diagnose me. Unfortunately he was (I can't remember the name of it) but they travel from hospital to hospital. So I never got to see him again. It was a HUGE miracle to meet him. He told me that he might not ever see someone with this again, but he said that he is lucky because now he knows what to look for. He thanked me for coming in and that he got to learn something new. Such a great doctor, I wish that he lived here. So then when I went into the hospital another time the regular internist was here. He said "well, it doesn't matter why you got it, it will never change", and "why bother searching to see what else you have, nothing will matter, a name doesn't help anything". So he refuses to see me, so I only have a gp who has no idea what to do, but to throw medications and see if they shut me up. He will not refer me to any other doctors, I am SK, we don't have my specialists here, and they said that I saw a specialist once and they refuse to see me. I shut up because I really can't handle talking about it over and over. They really don't care. But they do say that MAID would help.... So now my family is telling me to not say anything so that they don't do it.
It matters bc you need to know and understand it so you can do what you can to live your best life. I'm a nurse, I'm researching bc I know nothing about it, but I am being tested now. I like to take charge of my health and do research to know what works best for me. Your Dr is ignorant. Maybe you can do teleheath with someone that knows more than that dude
I am from canada also and its been very difficult with all these symptom what do you take for POTS please ??
I was diagnosed with POTS 14 yrs ago. I had a gastric bleed and lost 2/3 of my blood volume at the age of 40. My life changed completely that day. Every symptoms Summer talks about I have to the extreme. After 5 years I was no longer able to work and it still took me 3 yrs to get disability. Went before a judge and within minutes he said I was disabled. I suffer from symptoms everyday. Insomnia, pain, sweating, fatigue, blood pooling are some of my worst. I also was diagnosed with inflammatory disorders at the same time. When given the transfusion from my bleed out the blood cause inflammation that has never been regulated. When someone looks normal but tells you there are serious problems I understand. I look normal on the outside but suffer daily on the inside.
Jesus loves you
Boy, I know how that feels! I lost my teaching career due to chronic illnesses related to toxins my body couldn’t handle anymore. The judge immediately granted me disability as well.
I hope you’re doing ok. I live alone and it’s so hard to take care of paperwork and other things, I find. 🩷🙏
What kind of doctors can help with EDS and pots? I have every symptom for both but whenever I try to ask my doctors for help, they just give me this blank stare and don’t do or answer anything. Everything keeps getting worse. I was always a super limber kid with high anxiety and stomach issues, but just thought it was me. But now I keep getting more and more debilitating symptoms and am at a loss what to do. I’m in my 30s now and I’d never even heard of EDS until 2 years ago.
I could’ve written this. I became very ill after having Epstein-Barr, Mono in 2015. I turned 40 in 2017 and I thought Mono was coming back but I tested negative. I’ve had severe Dysautonomia ever since. It took four years to get a diagnosis. Three more years, trying to get disability. I was granted disability finally this year. I just turned 47. I have all the symptoms she mentions to extreme. It has been so hard to help my family understand what is going on with me. I also have RA, and hEDS
@@JescaPilar it is very difficult to find doctors who are educated on EDS. I see a rheumatologist. There are no specialists near me for POTS, I saw TCI. They had no idea what was going on. But they did diagnose me with POTS from atilt table test. They gave me no information to expect from the diagnosis. I had to do a lot of investigating on my own and looking up different medication’s that have been helpful for some people and suggesting those to my doctor to try. The blank stares are infuriating. don’t give up. There is a large support group here.
Thank you for this video. I was officially diagnosed today, the moment she says “come on brain, words, words” that is my whole life explained In one sentence
Found this video after having a daughter that had 2 years before her POTS diagnosed. We lost her after her second baby to heart failure- not POTS related. But will never forget what she /we went through trying to get a diagnosis…. After having multiple antidepressants thrown at her.. it was a horrible few years. Finally got money together and got her to Mayo Clinic and paying cash- she was diagnosed. Now with Long Covid- this is becoming more prevalent. Each patient needs to be properly diagnosed !
Pots it’s diagnosis?
I'm 50, found out that I have pots. It sucks at times and I don't wish this on anyone.
What are your symptoms ???
Did u always have Pots?!
Why has it taken me so long to find this video? Thank you so much for sharing this. It’s been over 20 years since I was diagnosed with POTS and this has to be one of the best videos I’ve seen to describe all of the symptoms and how much they can and do change throughout the day. I don’t want to list myself on the severe sign of the condition, but I unfortunately faint on a regular basis due to my heart rate and blood pressure. I don’t know how many times I’ve ended up in A&E via ambulance due to a fainting episode. Unfortunately today was one of them when my heart rate hit a high of 182bpm & then dropped to 52bpm, causing another faint. I’ve learned to take every day at a time & not plan anything, as I can never anticipate when an episode it gonna happen. I am lucky to have a good support system around me to help me. Thank you again for this video. x
I have all of these symptoms too. It only took the doctors 30 years to diagnose me. I was just labeled an anxiety patient and it was very disheartening.
Just anxiety? 😂 Most of my doctors think I'm a hypochondriac, I believe.
Welcome to the club.
@@sufyb6432 Mine did too, that is officially that was their one-time pre-diagnosis at the psychology department. At first it was anxiety/white coat syndrome, then a hypochondriac. Once I got an emeritus professor of endocrinology to send me to be tested in a university hospital after I had started vomiting regularly and they realised during sleep tests that my system was screwed - and particularly after COVID - they do not call me a hypocondriac anymore. But I had to buy a recording oximeter to prove that my system was completely effed up even during sleep for the private endocrinologist. But for 37 years it was supposedly all in my head.
(Mind you, mine was a slow-onset kind related to genetics and hypermobility (not EDS), so do not think that the more typical POTS patients where the on-set is sudden can deal with this disease for 37 years.)
@@samhartford8677
Yes , very disheartening . 😢
“Exhausted to the bone” literally just made me teary eyed. I’ve never heard it phrased this way and it very well explains how heavy and weak my entire body feels on a day to day basis. Getting anything done is becoming a chronic issue. Thank you for this. I may have to get a tilt table test.
Your video made me emotional because described my life right now. I had an appointment with my primary doctor today and hesitated to mention POTS. Instead she prescribed me some iron (because I’m anemic) and a follow up in a month. Hope I can bring that up to her next time and she helps me with a diagnosis.
Thank you so much as I have had most symptoms for the last year & it’s has finally been confirmed I have Tachycardia. I would have some doctors looks at me as if I was nuts & I believe that maybe because not a lot know about POTS. Anyway going to see a true specialist & it will be confirmed then.
When it goes wrong we actually learn just how awesome our bodies are.
😢
i also have POTS and i didnt even know about the beir spots! i have them and i was just wondering about it the other day. my jaw dropped when you mentioned them and i was like "THATS WHAT THEY ARE??"
Wow! I need to find out more about this. I went to the ER several months ago with many of these issues, post covid. They said I now have tachycardia with long covid. I told them I just felt woozy headed, weak, tired, nauseated and my ibs was out of control. I felt crazy! Thank God this popped up in my feed!
I agree! I have Lyme and put this in my watch later folder, and today it came up. One more thing I probably have, but it explains a lot❣️
My friend got pots from the innoculation.
I was told that POTS is associated with long Covid. Mine started after I had Covid.
I love that you are putting all of this out there for people to see. It helps so much to feel heard. My 21 year old has just been diagnosed, (after 11 years of being told there is nothing we can do for you). We finally found a doctor that said yes there is something wrong and I can hopefully help you. She is on the severe side of this illness and passes out a lot and suffers 24/7 migraines, and has all of the symptoms that you talk about. I have a milder case and get a lot of the symptoms but I can still function.
Thank you for all that you do to promote awareness of this illness.
Thank you for sharing that with me. I hope you and your daughter see many better symptom days ahead. Promise I’ll do what I can to help the cause with my skillset. ❤️🩹
@@summerdashenews
Good on YOU Summer ; please make sure you do.
My friend has had POTS for years and does not know it , because they used medications to mask her symptoms.
She is gradually getting worse , and no one will ever figure it out. Very difficult situation.
has she had any help with it, or is she still suffering
Thank you, Summer! I’m 44 and have suffered from hyperhidrosis and heart palpitations my whole life. After being told it was “just anxiety” and then later having more and more of the same symptoms you mentioned here, I finally decided to find out what’s really been going on. POTS diagnosis provided those “well this makes so much sense” kind of answers, but it also brought a lot of grief. 😔
The worst part is how many doctors don’t understand this “illness.” My wife has been dealing with (more like suffering from) this for many years (over 10) and was just diagnosed with POTS this year. They have a tendency to think the patient is just overreacting or having psychological problems. And it’s really tough on the spouses of those who suffer from this as well. Thank you for making this video and hopefully at some point medical science can come up with some better solutions to help those who have POTS.
they blame anxiety for everything when they don't have answers
i was thinking "hmm she looks like a news lady' then you said you had to leave ur job as being a news ancer and i felt like a wizard
Thanks for sharing! This disease has disabled me severely! I have horrible adrenal malfunctioning and can barely function. No one talks about how horrible this can be.
BIER SPOTS?! That's what this is called? I am being seen for possible POTS next week and I have always wondered what the heck these little spots are on my arms that I get sometimes. WOW. Thank you for providing this video. I related so much and learned a ton! xoxo
This is so well crafted, factually on point, and I love the moments of humor. Three of my kids have POTS and between them all, we cover most of the symptoms described. 😵💫 POTS is a spectrum illness and they all present differently, exactly as Summer explains near the end. Thank you Summer! This is important work you’re doing.
Emily!!! Thank you for such an encouraging comment. Means the world. I am so thankful to have a chance use my skills in this way. ❤️🩹
OMG THE OILY EYE THING 😫 I’ve literally been thinking my face oil was somehow in my lashes randomly every other day 😂
oh my god thank you!!!!! I've never related more to something. this is definitely what i have. i'm 25 and been trying to figure this out for so long, thinking something might be horribly wrong with me and thats brought on so many mental hurdles. I finally have closure because of you right now. i experience all but 1 of these daily
Thank you for sharing. This helps not to feel so alone. It’s extremely hard. Thank you
I have POTS I had so many symptoms. I was grateful to finally be diagnosed.
What helped you? Nobody talks about how to get relief
B1?@@VULPEX_Knives
I wish every primary care doctor watches this!
You have literally described me since having covid… it’s almost reassuring to finally hear someone describe my every symptom.
I had to quit my job it was so bad. I couldn’t stand without feeling like I was going to pass out.
Now I found a remote job and am doing what I can to help ease my symptoms w beta blockers compression socks and adding salt to my diet.
Thanks for sharing!
I have every single one of these symptoms. Thank you for this video. Useful to show family and friends.
I’m having a lot of trouble surviving in the workforce but don’t have money for a lawyer and feel like I’ll never get approved for disability. It feels so hopeless.
I wear a baseball hat all the time I find it keeps the pressure on my head so much better . Worth a try?
@@gavinlitchfield1928I tie a scarf around my head tight when I get the worst headaches
This is the BEST video regarding Pots! EXCELLENT! You described everything I am experiencing. It has destroyed my life! Can you do a follow up video of what treatments are available? You're empathic which is rare now a days. Don't let the reptile brain turds effect you. You're wonderful! Thank you for this informative video! ⚘🦋🌷🦋🌞
LOL Your “reptile brain turds” comment made me laugh. I will have more videos up soon. I love the treatment idea! I’m in the middle of a move and job change, so it may take me a few months, but I’m working on more videos! So grateful to be helpful in any way.
@@summerdashenews Thank you for replying, so kind of you! 🙏 No rush re: a video about treatment. I will wait. Especially since I've already spent the last 4 years suffering with POTS and was only recently diagnosed with it. The worst thing about it is that I easily feel faint when going up the stairs, which has forced me to be house bound (I'm afraid of going up the stairs after I return home from being outside). Plus, the EXTREME weakness in my legs, hence I can no longer travel, which I used to do a lot and was the joy of my life! 🏛✈🛩🛫🧳 Thanks again! 🌷🦋🌻⚘🌼🌞🌷
Great info! I just wanted to add tremors :) i have bad tremors sometimes when I have my episodes. Thanks so much for this! I was misdiagnosed for a year and a half with just anxiety…
Same! ❤❤❤
Same here
Thank you so much! This is a fantastic video that I can send to my friends and family regarding my illness.
I can't find anyone to listen to me when I explain these symptoms. Where are all the POTS Docs?? Thanks for mention the white spots on arms too.
Advocate for yourself as some docs don't seem to know or don't believe it still...we had to ask for test after test and referral to cardiologist and neurologist then finally got a diagnosis for my kiddo, some take years I've heard so keep going! You know you best so listen to your body.
Hello My son has all these symptoms that you described. He's been suffering since he was a teenager. Heart doctors keep dismissing him even though the table test says otherwise. How can I make him feel better? Is there medication?
@@melissajones9675
Hi Melissa
Get a blood pressure machine and measure it along with heart rate , when he’s lying down , sitting and standing , and try to observe the changes.
And show him how it differs from a normal person.
@@melissajones9675
The medicine is salty water ,
and regular meals every 3 to 4 hours.
There are lots of helpful videos.
Pharmaceutical drugs ONLY MASK THE PROBLEMS and it just gets worse.
Not to mention the side effects .
@@melissajones9675
The medicine is salty water ,
and regular meals every 3 to 4 hours.
There are lots of helpful videos.
Pharmaceutical drugs ONLY MASK THE PROBLEMS and it just gets worse.
Not to mention the side
Thank you for your education I was recently diagnosed with Pots and making my family and friends believe what is going on has been a challenge. This video will make it easy for me to educate them.
Okay, you just described a lot of my symptoms. Good thing I have a doctor’s app today.
This is a first. You named all of the symptoms I have. So many people only focus on the very common symptoms. Like you I have high blood pressure as my heart rate increases and BP drops when standing and gets high when sitting while my heart rate drops to normal. I’m on HBP and a beta blocker to control the tachycardia. I also have the temperature control issues where I just get hot out of the blue even if the room is cold, also urinary frequency and urgency as well as gastric urgency. My appetite is crazy. I typically get hungry in the evening but they say we’re supposed to eat more frequently. I’ve always had insomnia and now I think I’ve invented something else my sleep is so disregulated. The brain fog, trouble focusing, issues with memory, flighty feeling almost like I feel ill, dizziness, blurry vision worse on bad days, headaches, migraines, severe low back pain, neck pain, neuropathy in my feet, nausea and the overwhelming fatigue. Ugh. I really hate POTS.
How r u now
@@rameshlumb4003 Still on the meds. Energy is improving but I have good and bad days. I started on a Ketogenic diet which I think much better for me. Figured out my gut issues. I was drinking a ton of water and adding too much Sucralose to sweeten the added electrolytes. The Sucralose destroyed my microbial system in my gut. I started on live fermented sauerkraut and fermented pickle brine and it’s nearly back to normal. The company has a ton of tasty products and it was worth it. Just glad I figured it out. I’m not using Sucralose anymore but if I need to it’s just a single drop. On the plus side cutting that out and on Keto I don’t need things to be so sweet anymore. I wish I could say my other symptoms are gone but alas no. It’s an autonomic nervous system condition which affects a lot of different things and although I’m better than most not good as some and it’s a struggle. After I eat my body temperature regulation goes haywire. My body temperature is normal but I begin to sweat and feel overheated. It’s crazy. Trying to get into a program at a neurology clinic to see if they can help. I really would like to beat this 100%. Thanks for your comment. I hope you’re doing ok and not suffering with POTS or any other issues.
@@jaeshasway my friend I m taking metapralol succinate 75 mg and ivabradine for fast heart rate feel low energy sym.ur low energy sym improve my friend or not please answer
@@jaeshasway my friend which medicine u take for high blood pressure. Please answer
Thank you for this information. I used to be very active, but lately I can't walk very far before my heart rate spikes. Uphill and stairs are especially difficult. My EKG and bloodwork all came out normal, so no I'm looking at POTS as a possible diagnosis. Unfortunately I have no insurance so it will be difficult to see a bunch of different specialists. Videos like this are very useful for people like me who can't get a diagnosis.
What age are you? Are you sure you do not have possible slow arterial blockage going on? As in, not a heart attack, but lower-level tightening of arteries?
Have you tried doing other type of exercise than walking upright? Basic deconditioning should also be considered, particularly if you have been sick lately.
Depending on the severity of your symptoms and the level of fatigue (is it only related to exercise (as in walking or climbing stares, because that can be just because of deconditioning or a post-sickness symptom).
-- I'm not saying this to diminish your symptoms, but considering that physical fatigue over 6 months is a diagnostic criteria for both POTS and ME/CFS. In my case, the fatigue was literally not being able to walk to the bathroom, because it felt like my muscle cells were dying of a lack of oxygen on the way and my heart rate would go up and down together with my blood pressure. In the end I started and am still vomiting after 8 years. Yet at the same time my sister was really worried about not being able to climb up six floors without losing her breath and seeing a doctor about it (at her age I could not take a three steps without considering my ability to do so in that instant). And no offense to my sister, given I know that's how my POTS started too...
When I was trying to rule out diseases and determine what kind of a specialist I should see with my really really limited funds (because I was not able to work at that point, needless to say) I found some of the more precise symptom checkers helpful. But DO NOT USE THOSE if you are in any way a hypochondriac / or have an anxiety cell in your brain. I could use them to say 'well, that's not what I have' and rule out cancers or other more serious diseases. And it helped me to understand that I should see an endocrinologist because steady examinations by cardiologist over decades had not brought me any good. When I visited the endocrinologists I did a chart of all the symptoms I had or had had and what symptoms had started and ended/continued and when.
Also, an EKG does not say anything about POTS, however depending on the (hour of the) day walking can end up in exhaustion or feeling much better. My fitness biking test came out better than average and yet I vomited everything. I do not even know where all that vomit came from, frankly. That is, POTS is diagnosed by a tilt-table or stand-up 10 mins test at home, not by an EKG.
A really important thing to consider in your diagnoses is whether you had a sudden on-set of symptoms or a slow one. Mine was slow, which is why it's likely to be genetic (and my sister and nephew keep showing symptoms too) and is not a typical POTS story. Typically POTS comes after a viral disease, a situation in which one loses blood or is subject to shock and extreme stress. Given the underlying cause one can actually have ME/CFS with POTS (viral onset), a slowly progressing genetic hypermobility induced POTS (EDS etc.), a stress/trauma induced POTS or no POTS at all and rather another condition.
What I was tested for were some rare muscle cell abnormalities, cardiovascular abnormalities and psychiatric illness. In order to diagnose POTS, or to treat it, the doctors will need to typically rule out other diseases and the treatment of POTS caused by different underlying conditions can be quite different.
Sorry if this was long and I hope I did not burden you with my story too much. I was trying to give you some pointers in how to manage your own sense of illness. I had to basically study a minor in human physiology before I could get help for this condition. Well, there is no help really, but at least I now know what causes my symptoms and how to try to control them somewhat.
I wish you good luck on your journey.
If your heart rate was elevated buy an oximeter and any case a blood pressure monitor would be a good investment. If you do not have joint and muscle pains, it's unlikely to be anything autoimmune. Never forget underlying depression as a cause of deconditioning and hormonal imbalances. Any self-diagnosis of hormonal imbalances is highly dangerous. In order to take any irregular amount of any supplement it has to come with a side dish of supporting vitamins & minerals and can never be taken on without full medical literature research, because most of it is placebo and if not, it can be really harmful if not done right.
I hope this helped. If you want to talk, reply with the @ name, and I'll try to pick it up. All the best.
I have POTS and fibromyalgia and it suxs so much. Thank you for doing this video i am going to get friends to watch it. To see some of what i go throughout a daily. Again thanks and take care of yourself 🇳🇿
This is so much of my daughter, who has POTS. She suffered a TBI 4 months ago and this sent her symptoms being much, much worse. I'm so sorry you have to deal with this too. Thanks for speaking loudly about all of this. ❤️
I’m so grateful this was helpful. I’m sorry your daughter knows these feelings. Wishing her many better symptom days ahead. ❤️🩹
There’s definitely a POTS, EDS connection as well as underlying connection from Lyme, mycotoxins, etc.
thank you for this. i’m actually in the process of getting a doctors appointment because of my heart rate and dizziness. this video has made me realise how many symptoms i actually fall into, i’ve made a list of all of these so i do g miss any at the appointment (brain fog is one of them)
Thank you for the knowledge...have a newly found friend that I just want to be there for her as much as I can be...knowledge is power...thx again ❤❤❤
So interesting: I've had ME CFS for 28 years and many of the symptoms are the same and I also have a few more. I've always been sluggish in the morning however 3 years ago it got drastically worse and I collapsed in my kitchen. I've been to a doctor because I thought I possibly had POTS and was diagnosed with anxiety which about 6 months later I did have because I was terrified of passing out. I had new symptoms - unable to stand in the morning - takes about 2.5 - 3 hours to wear off, blurry vision, brain fog worse and light headed; I already had a weird irregular heartbeat however it got worse. 3 years later and I've done the NASA Tilt Test at home and I definitely seems to have POTS and my doctor still dismisses it as anxiety 😮.
I was wondering what a home NASA Tilt Test is, I have never heard of it? I was diagnosed by a "poor man's tilt table test". Thank God for a brand new specialist who was working in ER on a very boring night shift. He found out that I had POTS.
Did you use an oximeter and record it and perhaps show them the results? Are you in the UK?
@@christinagrant3252 Yes I used an oximeter and a BP cuff - I was so fixated on the HR increasing that I didn't realise my BP was falling drastically. I'm in the UK and doctors don't like when we do our own tests. Although I have POTS symptoms it's because of the BP drop.
I had to struggle with this for over two years. Dismissive doctors are the bane of my existence. My recommendation (that may be a little difficult if you live in the US) make an appointment with a cardiologist directly, they may not usually believe you at first, but they will make you do to the tilt test, and that's how I finally got my diagnosis.
I am also in the UK and it took many years for them to take me seriously. They finally referred me to a neurologist when I started asking about Lyme disease and the neurologist told me about POTS and then I told them at the doctors to give me a poor mans tilt table test and after they did they referred me to a cardiologist. Well it was a student doctor actually who didn’t refer me properly so I waited for 10 months thinking I was on the waiting list but I wasn’t so then I had to wait another 10 months but I finally had tests done ordered by the cardiologist and now I’m waiting for results. They really should refer you to cardiology. Tell them you are experiencing syncope or pre-syncope maybe. In the morning and when you stand-up. I was referred to the cardiologist with “syncope”. They need to take that seriously. I also have ME/CFS and they definitely dont take fatigue seriously as you will know but they need to take fainting/passing out seriously. I have never fainted because I sit/lie down before I do.
I have all the symptoms you do - thank you for sharing this as it helped me a lot! Long covid is complicated . You made my day 🙏💪♥️
Thank you for this! It can vary patient to patient and hour to hour. It's such a dynamic disability that it is hard for people to understand sometimes I think.
Omg, I have POTS AND Gastroparesis but I’ve always focused on the GP as the root of all my issues because it was most severe and pronounced. I never considered that my POTS could be the cause so I’ve not treated it or focused on it. Thanks for that information, it’s making me re-think my approach to my chronic illness.
Having POTS can be so frustrating. You can never tell what symptoms are from POTS or other undiagnosed issue. When I got COVID I literally had no idea. I was just constantly tired, it wasn’t until my mum made me take a test did I found out it wasn’t just POTS.
Met someone recently reason why Im.watching your video. Her is severe, we thought we would.loose her. Thank you for this video.
Thank you for spreading awareness and sharing your symptoms!
❤️🩹❤️🩹❤️🩹
well said, summer! i remember seeing an article about your experience some time ago. i’m happy to see that you’re on youtube, so that more people who are undiagnosed or not properly treated can gain knowledge and confidence. i’m off to look at your other videos. thanks, and many good days to you!☀️
ive been having issues since i was about 14, im 25 now, i always thought i had siezures because i would black out and people woule say when i black out it looks as tho the lights are on but no ones home. My last "Siezure" was this past august and i finally went to a brain specialist, im on medication at this time for anti convultion in case its epilepsy but Ive been experiencing ALL the syptoms that have been listed in this video. I've always have had extreme brain fog, my heart beats very fast, my body struggles to regulate tempature, my memory is very terrible, I have awful hip and back pains, but what i also have most is limb twitching, that one really tampers with my daily life.
Ive been researching POTS because epilepsy doesnt seems right, it doesnt line up with anything, the only one that does is Abscence siezures, they seem plausable but POTS feels spot on because my blackouts happen after i stand up or sit down fast, I have Bier Spots as well and have had them since i can remember, my mother has them as well so it may just be poor circulation [?]. Im going to talk to my doctor about this in December but this is a really eye opening thing for me, thank you for making this video!
This video is an excellent description of daily life symptoms with POTS. The video is easy enough for someone first learning about POTS, as well as comprehensive enough, that it validates those living with it. Every day with POTS is so very different, and you did a great job explaining this. Thanks for sharing!
Wow! What a meaningful compliment! Thank you!
@@summerdashenews You are so very welcome! ☺️
I come a cross this Vid and it sounds like how I feel every day and its a full time battle thank you for shedding light on something that I had no idea was a real thing or that so many people have it and may not know they have it think you for sharing your knowledge.
Thanks for sharing. It’s a tough road for sure! I have all these symptoms trying to get diagnosed.
Good luck, sis! I can't say that diagnosis will help much except in terms of releasing the anxiety of not knowing what's wrong and possibly getting a provable reason to our employers, family and friends explaining what's wrong. Sorry. I do not mean to disappoint you. Just saying that if you are down this road, this road is about mitigation. I went through the huge disappointment of not being able to be cured. It was not nice.
I appreciate your video, and thank you for your efforts. I've tried all kinds of work arounds for my POTS. It changes so much and can be so variable from one moment to the next, that I can't track what works and what doesn't. I was physically very active before the COVID-19 infections and seemed to recover somewhat after a year. But, it's back to square one since January.
Thank you so much for the work you’re doing to raise awareness!! As a fellow POTSie, I stand with you (figuratively, of course-gravity hates my body). 😉
You can sit or lie down by my side any time! 🤪 Thank you for being here. Appreciate the support. I don’t make any difference without all of you helping spread the message. Thank you for being part of the team effort. ❤️🩹
Thanks for sharing this video and raising awareness. I have heard about POTS from other people on UA-cam. I have very mild symptoms that crossed my mind to wonder though they were never diagnosed if they could be related to it or similar economic disfunction. What are the reasons I didn’t think so with because most of the people I heard discussing pods had the form wear their blood pressure dropped when their heart rate rose so it’s interest and to me that you mention your blood pressure rising because that’s more common for me.
My hr increases and goes down when placed in supine position at 99-70% which is significantly high . The sweating profusely and drenching my entire body is so annoying, the daily life is depressing and so prayers to all of us who deal with this daily I wouldn’t wish it on my worst enemy. Hugs everyone bring awareness so others don’t have to to suffer as long as you may have not realizing what happened to your body. It may also be why I have severe small fiber Polyneuropathy as well. Does anyone else have this.I appreciate you sharing so we aren’t alone and yet wish we were bc it’s so horrible and debilitating.
(05:24) We are grateful for you Summer, the best face we can put on POTS is an articulate and talented journalist like you. You inspire us. God I hate blood pooling, and all my other symptoms. It's hard to not feel frustrated.
Oh wow, okay another thing the doctors have been stumped by? My left arm, when I walk, turns blue like that and, with the beir spots!!! Nobody has been able to explain that and they get very concerned. Me, it's just a walk in the park with a blue arm with white spots lmao
Angiograms and cardiologists later, finally, a competent cardiologist diagnosed me, that lead me here, and now, I can explain to the doctor, those are bier spots. OMG Summer you rock tysm
One thing I struggle with is suicidal ideation. That must be common in our cohort. It's only ideation, but it adds to the stress levels when my brain tells me that life doesn't seem worth living, not when I feel like this so much of the time. Love to ya'll.
Mornings are Hell and the headaches. I saw a doctor and was told to correct my uric acid levels
What did u
You do for acid levels
I've been diagnosed with A-Fib but they never did the tilt table test with me. After watching this, I'm wondering if I have POTS. I've suffered from hyperhydrosis since I was 11, I get extremely dizzy, I have swelling in my feet and hands and wonderful brain fog. Oh and I can't forget the terrible fatigue. I was actually fired from a job for falling asleep while working, it's awful. Think it's time to go to a different dr. Thank you for this video, it was very informative
I had an episode yesterday (Christmas) every time I stood up I felt weak, lightheaded and a bad tremor. My heart rate won't go up much because I'm on Metoprolol and it keeps my heart rate from going up. Even when I'm working hard or trying to exercise, I do good to get my heart rate over 85 bpm. This stuff sucks. I got it after covid, it got worse after the second time of covid.
My gosh, but it's like we are all amazing warriors! I really don't know how we do it. I've got POTS, Emphysema, ME/CFS, Fibromyalgia, Hemachromatosis. I've survived an accident and head injury. I've been diagnosed with C-PTSD (alcohol, narcissism, violence, foster homes) and ADHD and it seems I'm an INFJ. AND I'm pushing 70. Yet, i can get online and read other people's stories and think, what have i got to complain about? But, when i think about another person going through what i go through, I'm not so hard on myself. I think there are a lot of heroes on this earth, its just too bad we all have to get so much rest and prefer not to keave the house if it can be avoided. Imagine if we all got miraculously well and used our life experiences and renewed energy to help the rest of the world!
A gal can dream, eh?
Thanks for the content Summer. I’ve been struggling with POTS for a year now. It’s been the biggest challenge of my life. So thanks for allowing me to relate. Do you happen to have muscle weakness/Shakiness/numbness and tingling? This is the one thing that pushes me over the edge mentally.
My daughter gets the shakiness in her lower half of her body.
WOW! This is a GREAT video! SO helpful and validating! Thank you!
Unrelated, but you are GORGEOUS
Thank you so much I am 36 years old and I can’t work anymore cuz of it I don’t have how to cope with it at all !
Vitamin d3 (5,000 to 10,000 in per day) with k1 and k2, plus a good multivitamin (see Dr. Berg's channel for more suggestions) have helped me tremendously. Wish I had known about these things years ago! The insomnia never goes away for me. I was born with it. Unisom tablets and melatonin help there. Felt nauseated and ill every morning, but somehow managed to work full time for 40 years. It's a struggle, folks! Take care of yourself and ignore the haters who think you should just "get over" this horrible disease. ❤
Dr Berg just did a very good series on B1 and connected it to POTS.
Thank you for this video!
My blood pressure rises when I sit or lay down, but it drops when I stand up. 😂
The pupils! I am newly diagnosed (waiting to see one of the only 2 specialists within a 100 mile radius of me) and my current doctor couldn’t explain why my pupils are almost always so small! It weirds me out but I’m slowly getting used to it, and thankfully my eyes are brown so it’s not very noticeable!
This is a great explanation! And the white spots, I get them but I have never been given an explanation. Thanks
I’ve never really been given an explanation for the Bier Spots, only the name and concept behind them. They’re a bit mysterious! I suppose if blood flow is impacted in POTS, a vascular anomaly like this would make sense. :)
@@summerdashenews yes that would definitely make sense, thanks
Your video was well spoken. I need to get answers from my Doc. I will be writing down the symoptoms here and elaborate a little but I have most of them I think ?
Amazing video 📸👏🏻 unusually faint and fall to the floor in the mornings fifth fall this month..i have other conditions.. but now i suspect POTS..
Do you have fybromyalgia
Great video! Thank you for spreading awareness. I’m over here with pots insomnia, watching you talk about pots insomnia at 1:15am, lol! 😂😭🥱
LOL I am so tempted to host a midnight snack party on Facebook Live over on my FB someday…I know we’re all awake!
I have been diagnosed with POTS post the Pfz covid vax. Random Tachycardia spikes, brain fog, HR unable to regulate properly during exercise, excessive sweating, mornings are hell - yep, all that and more. The injury occurred back in Nov 21 and those first 18 months were hell but over time, in a two steps forward then step to step and a half back sort of way, things are improving.
I have gone from healthy endurance athlete to being thrilled that I can go up and down the stairs a few times before all the issues kick in. In training I have to be careful. I have gone from being able to do 1 hour on a rower while sustaining my HR at 180+ for sprints at the end, to now watching my HR carefully as if it gets over 140 then the crazy HR stuff will start to happen.
As for the sleep side of things I can reccomend Melatonin. I recently been prescribed it again to help with the sleep side of things. The insomnia still an issue but when I do fall asleep I do have a much better sleep. That and beta blockers for the HR stuff. Welcome to Club POTS.
Thank you for this informative video. I’ve had POTS since I was a teen and I have Ehlers-Danlos Syndrome. I always thought the main symptom of POTS was blacking out, which is mine. I can feel the blood leaving my face, my lips feel numb, and my vision going black. I try to sit down immediately or at least squat so I’m not passing out completely and hitting my head. My husband knows when I’m starting to struggle and will come to me to help. My symptoms are worse with hot weather so I have to be cautious when the temperature goes up. My blood pools in the evening and if I’m on my feet a lot, for instance brushing my teeth, my feet will turn purple. I also get a bright red face at times, which may be related. I have evidence on an MRI of my brain of a TBI most likely related to POTS.
I have same problem i have self diagnosis HEds because i have craniocervical instablity
Thank you for sharing I just had been diagnosed with pots I understand more my self , but unfortunately my family being mum with kids sometimes I can't bear the fatigue and do all things by my self.
I have a question. My doctor said that POTS patients always feel heart palpitations or they always have (even sitting or resting) the sensation of the heart beating, is that right?
A million thanks!
I've never heard of this! I have everything you've listed! I was about to just give up. I've had one thing pop up just 3 days ago. Has anyone had toes turn black? I was going to the DR tomorrow or Monday because I've had my little toe turn black and today a small rash start around it. The brain fog, forgetfulness, the oil in the eyes, the fatigue, lightheadedness, and I've recently in the past 2 weeks gotten extreme dizziness. Nausea almost all the time. This may be a chance that I may get some answers. Thank you so much for this information.
HOW did you FINALLY get diagnosed?? I've been chasing this for almost 3 years, now. I initially brought this up to my PCP but, it was never followed up. Instead, I've had EVERY GI test imaginable. Gallbladder surgery, and a gastroparesis diagnosis. I had an auto accident 26 years ago, rendering me totally disabled. PT was my saving grace until 2020, when i suffered a TIA. I believe it all stems from POTS caused by my vagus nerve being encroached. What kind of doctor finally reached your diagnosis? I'm FINALLY seeing an integrative DO, that does manipulation. He seems to be in the right track. However, IF there's another medical professional that is more capable to diagnose POTS, then i will asked to be referred. THANK YOU SO MUCH! I HAVE EVERY. SINGLE. SYMPTOM. 😢
Hi Paula, so sorry for your lengthy and difficult medical journey. An autonomics specialists is the correct doctor to see for POTS. Autonomics specialists are usually either in cardiology or neurology depending on the hospital system. Dysautonomia International has a list of doctors to find the closest near your. ❤️🩹
THANK YOU, SO MUCH! I really appreciate pointing me in the right direction. As you know, the symptoms are SO scattered. Seeing a different specialist for each thing, NOBODY gets the full picture. PCPs don't seem as capable anymore. They're there to administer antibiotics and steroids for URIs, write refills on maintenance meds, and that's about it. I will reach out to mine, and ask for a referral. She IS really good about passing me along. Thanks again. I finally have some hope. 🙏
Really great info. Thank you!
Thank you for watching!
I have so many of these symptoms and have yet to find a doctor that actually listens.😢
Im working on getting a diagnosis and i relate to this so much... specially the heart rate like sometimes im not doing anything was walking and my heart rate goes over 150
Thank you so much this is such a help .. Love and Blessings xxx
Seeing this right now I feel like has and will change my life I have every symptom I’m calling my Dr Monday to make an appointment I am so miserable 😭
If someone has POTS, in my opinion it's vital they get evaluated for CSF leak. Cerebrospinal fluid leaks can make you have secondary POTS. If that's the case then there is a cure. The POTS disappears when the leak is fixed.
Thank you for sharing! More here: ua-cam.com/video/kRdjRN5400Q/v-deo.htmlsi=U8STXt3WEgnoSX01
@MoparGuy1625 Look into TMS/ 'mindbody syndrome' as POTS can be a big sign of that. Any autonomic nervous system dysregulation can be coming from the brain. Look up success stories on youtube of people recovering from pots using a mindbody approach.
Yes mornings are hardest.
May take till 11 or noon to get the water right, the bp right the sodium...fluid to your head..
Mid back pain( extreme muscle cramping after trying to be up working )
Severe foot leg pain with cramping after trying to be up & active 4-6 hours I'm hurting ..
Summer. Thank you for your video. I am trying to get diagnosed. I am totally disabled, with almost all of those symptoms, along with depression/anxiety. So very hard to get diagnosed where I live. Can you provide what medications you take and treatments to help manage. If you are ok with listing those. Thanks so much, and bless you.
kevin - google is your friend - research. there are a few pots experts around, and more doctors are realizing that pots is a thing, but you and google, especially in a difficult area of the world, can figure this out. i’ve seen some knowledgeable and understanding doctors at “academic centers of excellence” and in small towns, but otherwise got blank stares from doctors for decades, til i figured out that i had pots, then saw a pots expert who confirmed it. it’s a difficult disease, but there are meds and lifestyle changes that can help. you can do this.
@janeshipley6993 Thank you for your support. I'm trying to get autonomic testing now.
@@kevinsomers2541 you’re on your way - trust your gut - much luck to you ☀️.
What can we do?
I mean I'm 22 years old and my ECG reports mention sinus tachycardia but when i do any physical exercise my bpm goes from 76 to 110. When I walk it goes above 130. It is not normal i know that. I'm on petril 0.25 mg. But i feel dizzy when i stand for too long with high palpitations and then i sit down out of fear
It is horrible
Thank you for this.
Why wasn't anxiety mentioned?
Sounds like all my symptoms 😢 still trying to get a diagnosis
It is interesting that I have a lot of similar symptoms, but I have May Thurner's. My left iliac vein got completely crushed by my right iliac vein. So for 6 months, I had very little blood flow in my left leg until doctors finally figured it out. I had a stent put in. While my symptoms from May Thurner's are mild compared to before, I now have all the symptoms of the damage that it caused during those 6 months. The major damage I have is to my left iliac vein. From where it was crushed, all the way down to my left foot. It is one giant refluxing vein, meaning the gates in the vein that are supposed to help push blood up, are broken. So blood is going down into my leg, then struggling to get back up. It tries, but falls back down. Since it's a major vein, nothing can be done.
I deal with vertigo now. It causes brain fog and short memory when it gets bad enough. I also get nauseous and lightheaded from it, and it affects my vision. I have been having a lot of blurriness and it's hard to focus. This can give me headaches to migraines. I struggle with temperature regulation. 75 degrees used to be perfect for me, but now it's way too hot. I will be drenched in sweat. Then when it gets cold, it's horrible. It mostly affects my legs and feet. They will go pale and ice cold. This is very painful. It will take me hours before I can warm them up, then it's a huge struggle to keep them warm. Compression socks, wool socks, blankets, etc. It's almost impossible to warm them up.
I have always dealt with blood rushing to my head when I get up too fast, so I already slowly get up and sit as needed. This is now worse. Especially if I have been laying down for a while. I now have constipation issues. Doesn't matter how healthy I eat and exercise, my body just can't and won't go. So I'm surviving off of miralax. I do have appetite issues. I will be starving, take two bites, then I feel full. Even though I'm not and my sugar level is low. I will force myself to eat as much as possible. I am now wasting food because I can't eat all of it.
Mornings are the worst for me. My body has to slowly boot up in the first few hours. There are mornings that I literally cannot bend over due to agonizing pain that can make me fall down to my hands and knees. Then the fatigue. From the horrible blood flow, chronic pain, and everything else, I'm always tired. Sometimes downright exhausted. There are days I just can't. I have to plan my day ahead and decide what to spend my energy on depending on how much energy I have that day, which can fluctuate or just drop. I have other symptoms, but these are the ones similar to what you mentioned for POTS.
Omigosh, you're me! I have pretty much all these symptoms.
Im 61, being tested for POTS or seizures, not sure yet
Yes our pulse is way to high. None of the docs know how to diagnose this. I saw several docs in Europe and america and they all don’t know. Lots of supplements, the pink pepto. It makes sense what your saying about Autonomic NS.
Thank you for your video. Does pots affect your breathing at all in a negative way?