“Patients come first, definition comes after that”. Mad respect Dr. Gupta. I wish more doctors think like you do. We need to be reminded that definition criteria, tests/ investigations all have the potential of false negative and missing the outliers. Thanks for this amazing session
I love how he admits he went from a doctor with knowledge on how to treat people to a doctor with knowledge on how to care for people, that’s the shift we need to see from many in healthcare professionals.
Wow just wow 🤩 dr. Gupta I’m a personalized precision medicine doctor who treats such patients This is the most comprehensive resource I’ve found I’m so grateful for all your efforts
Omgggg how beautiful he grew so much as a doctor !! 🥺 I love this so much. ❤️ I just got diagnosed after 4 years of educating myself and begged for doctors to listen and I knew it was pots the whole time. Ugh there’s nothing like haven’t your life taken and a doctor loving you like there family to help fight with you.
I diagnosed myself...after 15 years. If you haven't read about leaky gut syndrome please add it to your list. I'm certain it is related to POTS. The diet saved my life. Thank you for being a doctor who takes the time and sorry you had to learn the hard way
You have such a good heart dr Gupta!!! 😊Apparently many drs don’t want to bother learning about this malady let alone treating it! I have experienced POTS off and on for several years now and have ME/CFS. Now my granddaughter has POTS really bad and was blacking out multiple times a day and no one would believe her and help her until she started having seizures. They all thought it was psychological because she’s a teenager. I was absolutely incredulous that no one except the school nurse was taking this seriously!
I have three children with special needs including my son who is severely disabled and in a wheelchair. I would be hopping mad that nobody but the school nurse was taken by it seriously. She should've been receiving better care than that from those dr's, as a parent that's appalling not to mention disgraceful.
What a beautiful & kind heart you have! May you be contagious to Drs everywhere! Thank you from the bottom of my heart. 21 years heath journey with #Myalgicencephalomyelitis #POTS #MCAS
What an amazing example of patient centred care and a clinician that actually wants to help those suffering. POTS is a common symptom in long term (greater than 3 weeks) benzodiazepine use (tolerance, withdrawal, post acute withdrawal syndrome, benzodiazepine induced neurological dysfunction)
Oh. God. I started having POTS after a 10 days benzo use. All doctors dismiss and gaslight me. But I had no tachycardia at all prior to benzoes. Now it's been more than a year since then, my HR standing up is 130. When I lie down it's always 60-70. 4 months before benzoes I went off ssri rapidly. It might have contributed to me developing POTS
@@AlbaLynxQueen, which SSRI did you take? I am hoping that Zoloft will help me. Sea salt does not ALWAYS bring my BP up enough. I am now on saline solution, but it ONLY works while I have the saline put straight into the IV, and I feel ALMOST normal (without bloat, without dizziness, not passing out, good bowel movement, less headaches and body aches, BP & HR is pretty normal. . Yes, almost back to normal.). When the the Saline IV comes out, it’s back to feeling POTSY🙄🙄🙄
@@dva62004 I took Paxil. No POTS prior! When I went off, a few months later I started having tachycardia when standing. Paxil caused a horrible withdrawal and a cascade of new symptoms and health problems!
This was tremendously helpful. I cried during certain parts bc i have been struggling with this for years with doctors dismissing me. It started a few years ago with either COVID or i had a surgery that removed my ovaries and then was put on estrogen/progesterone hormone replacement - i don't know if was covid or the hormones bc they were at the same time. I had all these symptoms to a lesser degree all my life (i thought everyone struggled with them! 🙄). But when those events happened in my life - this condition became literally debilitating. I thought i might be dying. As i listened to this, i cried with relief and validation. Thank you🙏💜
I'm betting it was Covid.. alot of people developed it after a Covid infection.. it exacerbated mine terribly, still struggling... How are you doing now?
I have been suffering with this my entire life! It’s so refreshing to hear a doctor who actually listens instead of dismissing patients who have difficult medical issues! I was told I had fibromyalgia when I was in my 20’s and have carried that diagnosis around since then. It seemed to fit some things but not all my symptoms. My daughter was just diagnosed with EDS and is being sent to a geneticist. It answers all of our symptoms finally! And Dysautonomia is a comorbidity of EDS! Thank you for this information! Maybe now I can take some of this info to my dr and see where we go from here…..wow
What tests what company ? Do you remember price? Did you ge tested and daughter? What helps you ? Do you at all experience internal vibrations? Would love some help
Is it possible to Love a doctor, you've never met, that is half way across the globe because he understands your problems more than any professional you've ever sat with? Why yes.... Yes it is. So you ever visit the USA? I would travel to meet you to just say thank you.
This is amazing. Thank you so much. I was diagnosed two weeks ago by a cardiologist. Wafted a few years of being told by everyone (family and GP!) that I had anxiety.
Dr Gupta has saved my life. I've felt unwell for years and over time my symptoms have worsened and are now so debilitating I'm unable to function. My appointment with Dr Gupta gave me hope knowing that even thought I've been diagnosed with a chronic illness and there is no cure, he will help. I thank you Dr Gupta 🙏 for everything you have done for me this week. I'm so very grateful 🙏. Maria Flower
Wow ! Finally a diagnosis that fits me to the point . All this time I’ve been suffering ( 18 months with no diagnosis or treatment plan. Meds after meds that had nothing to do with the my symptoms , agony . My B12 and Immune system is very high w/inflammation where I am sensitive to too much heat and cold . On top of everything I have neuropathy and a swollen esophagus that feels like I am carrying 50 pounds around my neck . I need peace 😢
I am 79 years old, have had ME/CFS for 50+ years, but acquired POTS (including all those other dysfunctions on the list) a couple years ago when my PCP put me on a diuretic for B/P. He then wanted me on a reconditioning exercise program. I refused, and had a blood test done through another doctor: my electrolytes were severely depleted. Discontinuing the B/P meds and concentrating on intense restoration of electrolytes and other depleted nutrients has helped reduce the POTS heart rate, eliminate IBS, improve sleep,
@@tanyawieczorek6603 I got tired of spending my life in bed while trying to get treatment for POTS, so on my own about a month ago, I started getting IV therapy. Since I know that electrolyte and nutrient deficiency caused the situation, I started with a dehydration IV that includes electrolytes and minerals, not just sodium. Now I have a few days at a time that I can be on my feet long enough to get my laundry done or to load my dishwasher. Besides slowing my heart rate a bit, the IVs provide better pain control, ability to digest food, to read for a short period, sleep better., ability to open bottles and jars. Though my PCP made a referral to cardiology to treat my POTS, there do not seem to be any who treat POTS in this area. So, I am hoping to convince him to at least get the IVs covered as well as periodic blood work to monitor electrolytes better.
I've come to this video after suffering from symptoms like POTS for about 2 months now. It was scary to have my heartrate spike up, going to the ER, not knowing what I had, etc. Working on getting a diagnosis for POTS, but the soonest I can get verified is mid November. I've been trying my best to hydate and take some salt tablets, and keep mobile.
@@zory1111 I'm still having a high heart rate when I'm up right, although I've just been drinking plain water until I get an official diagnosis just so I don't overdo it with the sodium.
I was born I'm with this I was in 15 Forster Homes and my adopted parents said they never would have adopted me if they knew how sickly I was a kid I and still am. And then I got denied for 13 years for SSI and repeatedly tried to kill myself because I was kicked out of my house at 18 for whatever reason, and was to sick to even get out of bed and still am let alone work. I finally got on ssi because of the effects it's had on my body in my 3s❤0s has caused me severe mental and emotional issues were I spent 70 ish times in mental institutions and behavioural instations. I never got to live out my life instead I like my "angel mother from Philadelphia" I had to have my entire life spent in bed and all my relationships were only spent with whoever would show up and hangout. 😢
I really want to add also that with my experience in reading a lot of people's symptoms, that I've noticed most patients with pots or dysautonomia have low heart rate variability. (HRV) not heart rate, but the variability. Low heart rate variability is crucial in this illness. It causes the exhaustion, the irritability the lack of get up! It directly relates to the autonomic nervous system. I got an apollo watch, that seemed to help with it. But I still have HRV in the low 20s most days! There are so many facets to this illness and I'm so glad it is getting the recognition it deserves! There are so many of us suffering that have been diagnosed with anxiety for way too long. It's a debilitating feeling and I am praying that soon I will be able to find a Dr who will help me. Who will listen and not just tell me to drink more water which I already do 😓
My POTS doc says to use my fitbit HRV readings as an early warning if they're significantly low for 3 days in a row - I'm at risk for collapse! Sure enough I'm at a job called "Resto" where I walk a line of people to pick up the detritus left by 80,000 participants at Burning Man... I collapsed. I'm typing this from bed and only ate 1/3rd of my 1st breakfast in 2 days!
What do you consider "low"? I run about 23ms HRV as a midpoint when I'm more functional. I had 14ms HRV for 3 days in a row when I crashed 2 days ago. Is that "low"?
Have had this for years with all sorts of dx from mental, nothing, to finally autonomic disorder. Qigong, yoga, selective healthy eating, supps- well researched, meditation, energy medicine have helped me 99% more than gabapentin, blah, blah. I just love your purity intention to know & serve people the truth. Now have heart failure & just know it is related.❤❤❤
This guy is everything that distinguishes physicians who want to relieve suffering as opposed to those who just want to relieve your insurance company of a ton of money
I'm currently seeking a diagnosis but since some friends have brought POTS to my attention I feel like there is finally hope!!! I have had a mountain of symptoms for 11 years, starting when I was 16. I have been to so many doctors and taken so many trips to the ER but always get turned away without answers. I have been diagnosed with anxiety disorder, but I've always felt there was something more to it. I had covid in September and had horrible brain fog and fatigue that never went away. My other symptoms have worsened as well. In November I had a really bad spell of high heart rate (reached 180 at one point) and extreme lightheadedness and dizziness on top of the worse brain fog and fatigue I've ever experienced. I thought I was dying. I think covid brought out my underlying condition which I'm 100% positive is POTS. That possibility connects ALL of the dots for me, especially all of the things I thought were unrelated such as foot pain & extreme photo sensitivity. My PCP thankfully knew about POTS and was very supportive of me wanting to investigate POTS further and gave me a referral to the cardiologist, so now I'm waiting to see seen by them.
@@tanyawieczorek6603 So much better. I ended up seeing a functional medicine doctor because my pcp couldn’t really treat it. My functional medicine doc knew all about it though and put me on herbals and instructed me on lifestyle changes to make. After his treatment I felt relief from my crazy symptoms in less than a month. Now I’m at a point of just being careful not to aggravate my symptoms, but when I have a flare I know what to do.
What a wonderful doctor the world would be a better place with more Dr Gupta I’ve had rapid heart rates I’ve got CFS and fibromyalgia My son is experiencing the same he’s been checked and heart is ok but they don’t know why he’s generally not well daily
I'm not sure what award Dr. Gupta should get, but he should get something for being such a warm and caring and dedicated physician! I greatly admire his attitude and his work and it's wonderful that he's helped so many people with this condition. I believe I had pots or dysautonomia at a young age maybe around 8 years old because I started to have near fainting episodes when I would stand up too quickly it went on until I was about 50 or 55 years old just maybe 10 years ago. I think because my blood pressure naturally went up as I aged it took care of that near fainting. I never had tachycardia, but I do have intermittent atrial fibrillation and I have a histamine intolerance now. It's all kind of coming together and I've also suffered neurologic pain syndrome. If I had had a doctor like Dr Gupta my life probably would have been a lot different.
Amazing minds and Leaders are rarely satisfied with the Status Quo, especially when there are so many questions and much unknown. And more to be done. Dr. Gupta is one of those people. He's always searching for more. Mediocracy is not his thing. Thank God for people like him in the Medical Field. He sacrificed and worked hard to become the doctor he is. He will never stop growing. 🙏
Awesome presentation. Very clear and well understood. Thank you for caring for the person and take time to make videos an helpful advocation. We need more Drs like you. I wish I could come to you as my Dr. Where are you located?
It seems like Dr. Sanjay Gupta has mostly come to his senses around recommending IV Saline and that's great to see. I was concerned when he thought it was a good solution.
I'm on iv hydration at 100ml and hour for 21 hours a day. I have a CVC central venous catheter, have had it for years . I have severe mast cell activation disorder and Dysautonomia. I'm on a bunch of IV medications for my reactions. I been on SQIG for my Dysautonomia, and it has been a game changer. Thank you for helping us patients with these medical conditions ❤️ Starr Andrews Strong HG Activist Hyperemesis Gravidarum Before During And The Aftermath-HGBDATA
I was fine, about to hike 4000ft mountains. Athletic all my life. At 56 last year got Covid twice and Lyme disease, Bells Palsy. in between that. Never been the same. So long Covid? But my symptoms fit into POTS and MCAS. I take walks but have to walk slow or my heart tachs right up. Forget going up hills. Fatigue, chest pain, guts are a mess and sleep sucks. I am hoping things improve in time but underneath I am don’t believe I will ever be the same. I am trying to learn to live my new normal. I did have to take 6 months off from work because the fatigue and symptoms were too much. I am back to work but can only tolerate a 25hr week. It’s really hard as I am a type A busy kind of person.
Thank you ~ it's not a disease, it's a condition. I can't take those meds because I have low bp and ischaemic heart disease. I have Dysautonomia (worse than ever) following a Covid infection. There are SO many of us.
MCAS is something you want to check into if you got worse from covid. Seems to be a triad with EDS, POTS, and MCAS. They think it's caused from MCAS. Mast cells are behind long covid and the odd overreactions. It's another route to try.
This was an excellent presentation, Dr. Gupta! Long overdue and much needed. Thank you for being the Doctor who was willing and dedicated enough to take it on. A curious, hard working and caring Cardiologist!
Wow you are an amazing Dr , I am a 3rd generation within my family, with fibromyalgia, hypermobility, gastrointestinal and ibs issues, we are constantly anemic and we are getting worse especially my mum
Yes! Hormonal changes are huge! Right before menstruation, longhauler symptoms like muscle weakness & POTS surge to the point of disability. Hormonal pill greatly reduces symptoms & restores my health to the point of almost complete functionality. Had been on the bc pill for ten or so years, but went off of it preCOVID. Now back on it & it *greatly* reduces my POTS symptoms. Life-changing. Thank you for confirming this & please tell everybody! :)
Interesting! I’ve been thinking that’s what caused my symptoms. I’ve been off BC pill for 11 months before I started having POTS like symptoms. I have PCOS so that’s why I was put on bc pill but then decided I want to manage my PCOS naturally. In the last month, my heart rate shoots up so high during the night (while lying down) so that I have not been sleeping for like a month now.. it’s absolutely debilitating. I went to ER twice, did bunch of tests, and nothing would explain why I feel this way. Though they discharged me a cardiologist referral. Still looking for answers :(
I have suffered since a teenager. No doctor could tell me what wrong. Started doing my own research and came across POTs. I was relieved. I was already taking propranolol for fast heart rate and told it would help my anxiety.
I wish my daughter could find a doctor like you in San Diego. They all want you to fit in their box for their specialty. It has taken a year to even get an appointment. Most doctors just don't care or won't take the time it takes. The patients aren't able to fit into a 15 minute appointment.
Watching from the US . Enjoyed the education. You are not only a great Doctor but an incredible human being. God richly bless you as you take care of his children. What happens if you have high blood pressure and on a sodium restricted diet regarding sodium intake? Thanks so much.
I feel I also have this, started after COVID in November 2020. A year ago after much researching multiple symptoms, my PCP basically laughed at me and said no way. Mine start when I wake up and walk to bathroom, by the time I get to the toilet I am tingling from head, down my arms, across my chest feeling as if I am on fire, start pouring sweat and have actually passed out several times, losing control of my body and functions. I am constantly tired, do not sleep well or normal at all. Have a flutter in my sternum often and heart rate goes up and down regardless of what I'm doing. It's scary and debilitating. Actually my chiropractor and his naturopathic brother have told me they're sure this is what I have.
I was able to maintain mine with clean eating and exercise, haven't had an episode since June of 2022....when I'm not eating well I can feel it creeping in and it gets me back on track in a flash. I never ever want to feel like that ever again.
@@aaltimore522Good for you but it’s hardly the solution for everyone. While most people have a different understanding what „clean“ means, I was certainly eating very heavily and exercising 6-7 days a week. After Covid triggered Pots, exercise makes me ill. I love it, but any time I go back to my old hobbies, I gain 10 lbs in water retention and get really sick (6 cases of severe bronchitis in 2 years and 8 courses of antibiotics, which then led to repeat deconditioning and a worsening of Pots). Post exercise malaise is a huge issue for many patients with Pots.
I wish I could get an appointment with you, I'm so frustrated with my GP. It took me 6 years to finally get an M.E diagnosis, and the last few years (worse now) I've been having dysautonomia symptoms, POTS especially. Pounding heart just from standing, often losing my balance and feeling really sick. My heart rate raises from 80 bpm to 130 just standing. I also get the pounding heart after eating, and night time anxiety. 6 years of feeling ill and not being believed . 😞
It’s important to know that preemies experience dysautonomia because their automatic reflexes do not coordinate well, this often does does ‘catch-up’ especially if you were born less than 32 weeks GA. Under stress or stimulation of any kind they experience orthostatic hypotension (bradycardia), while late preterm (34-37 weeks) experience tachycardia. Abnormal Baroreflex sensitivity, Whereby the baroreflex does not coordinate with the parasympathetic or sympathetic reflexes, resulting in episodes of hypertension (tachycardia) and/or hypotension (bradycardia). This helps explain avoidant behavior-must stop, rest, recover.
I wish I lived in England. I ironically live in Calgary Albert where Dr Raj is located but not only does he not have any time for his patients but he doesnt seem to give a single shit AT ALL about us. I wish I could see Dr Gupta. 😢 I dont even want to be alive anymore because this illness has stolen everything from me and no one has been willing to help me for 3 years now. I'm in a prison that is literally my own bed.
Been there and living it still 26 years HDS Asperger's add how are you now have you got much pain check out Dr lenz Dr schubiner where us Dr Raj based England is not good for these conditions
Good Doctor, You are making this world a much better place. I wanted to report that I sustained triple negative breast cancer in 2013, 2013 while leukoplenic caught a respiratory infection. This post-viral illness segued into ME (myalgic encephalomyelitis). 2014 advanced basal cell whilst immunocompromised on my left scalp>split thickness skin graft to approximate the head wound slightly larger than the size of an adults palm. 2016 triple negative breast cancer chest-wall recurrence. Bedridden for 8 years. Severe chronic pain. Hence CIPN chemotherapy induced peripheral neuropathy, Dysautonomia, right-sided low atrial pressure, negative full cardiac work up but continued with incessant, sharp, chest pain. Now, finally to the point!! My ME/CFS MD in Boston, Ma, David Murray Systrom and his PA have RX’d Pyridostigmine (Mestinon) now for over three years. Chest pain 100% treated. My current dose is 30mg three times a day. I feel much better, can be somewhat active-ish, and drive again. You and Dr. Systrom are of the same cloth>practicing patient-centered medicine. Respectfully, Katie
Your comment broke my heart. I also saw Dr. Raj but he didn’t have any advice for me other than the basics. I had to become carnivore. Only beef and salt. It’s changed my life. It is awful, but I can stand for many hours now. It took 3 months to adapt and it was really hard. I also treated a double MTHFR mutation, went to NUCCA to realign C1 and C2. Don’t give up! We are all laying in our beds crying with you. You aren’t alone! We all will keep fighting to get better and fighting for more solutions!
I was finally diagnosed with Pots after suffering for 2 years after Covid. Unfortunately, I was told to decrease my exercise and increase salt and that was it. Even though I have the Pots black on white, my other doctors I tried to see about MCAS and other issues often associated with Pots still dismissed me. Am printing out all the studies I have read and going back next week. Really hoping they can do something because I cannot and will not live this way for another 50-60 years. With Ivabradine, I can swim a bit without a HR of 180, but now the fatigue and brainfog are so bad again, I can’t work at all anymore. It’s ridiculous.
It was only after LAD stenting did my heart beat strong enough to feel the pulse in my head did I realize what was happening. As I stand, my heartrate skyrockets and my blood pressure plummets
I spent over 14 years saying that I thought I’d got Pots. No one listened to me and no one believed me they thought that the Cardiologists knew best. I was like a broken record but I never gave gave up. Then two doctors individually in A&E told me that that’s what I’d got. One said that I had symptoms that I didn’t know about and the other one gave me a print out. What did my doctor do? She sent me to a cardiologist for two years and when I told him what the two doctors had said he said “What do they know?” and he kept prescribing medications which made me so ill. I made an appointment with my doctor. She asked me how I’d got on and said that he can be a bit strange. I said that I still thought that I’d got Pots and she said “So do I.” But she didn’t know where to send me. I told her that I wanted to be referred to Cardiology at the LGI. I saw a doctor with a special interest in Pots and he diagnosed me. He also wrote a letter that I could take to A&E asking if they’d give me IV fluids. No one had heard of Pots. I’m relieved that some Pots sufferers don’t have to fight as long as I did these days.
Wow the other, I am not crazy, on top of 4 autoimmune conditions realising that this also is part of what I have been living with and telling drs who don’t believe me 💚💜💚💜
I have every symptom listed. Raced professional motocross for 15 years and get winded carrying my 8 month old to the car now. What got me was when you stated patients complain of palpitations when standing still but go away when walking. Testing today my heart rate was 60 bpm sitting with my feet up. I stood up and walked around and it went to 115-120. As soon as I stopped walking I felt pressure in my body and my heart went to 140. It took a couple minutes for the racing to stop and as soon as I stated walking again it would go back to 90. It's so frustrating. I wonder if it goes down when walking because muscles contract and vessels pump the blood back to the brain and heart easier. Also could the delay in vasoconstriction cause too much adrenaline to be released giving anxiety attacks?
Im a 73 year old woman. I got covid for the 3rd time in march. Sence than i have been suffering fron all the systomes you talked about. It has taken all my energy to type this. What is going on. I was VERY active 3 months ago i could out work any man. Now im weak as a kitten.
I'm seeing Optic Nerve Atrophy at age 51 after decades of random visual dimming. Any connection to lack of blood to brain and a die off of Optic Nerve? Referral to Neuro-Opthamology, but 4 month wait list.
Regarding tilt table, esp. for kids: it is not necessary to strap someone to a tilt table. You can just have the kids lie down for 5-10 min, monitoring hr and bp, then have them get up very quickly and again monitor hr and bp. If hr shoots up more than 30 beats per min while bp stays steady, it’s Pots. If bp plummets, it’s orthostatic hypotension.
On Midodrine here FANTASTIC DRUG ! ❤❤❤ I think slowly getting my life back…..been hell for years with POTS. A MIRACLE I NEVER FELL DOWN OUR 2 flights of stairs in this house. Felt drunk half the time couldn’t walk straight. YEARSSSSSS WITH POTS. Lower dose did zilch for me , got on to 10 mg 3x daily fast. No results on lower dose. Sleep on an incline pillow.
I was prescribed that medication but I was scared to take it because the doctor mentioned that it raises your blood pressure greatly if you lay down so you can’t lay down for at least four hours after you take it. And since laying down is my biggest relieve it kind of scared me. Can you please share your experience with mitodrine in more detail? Also, did you have any success with adding extra salt and water into your diet? And are you taking any other medication’s for pots? Thanks I’m desperate for help I’m supposed to also start on a new medication guanfacine to replace metoprolol, but that one has some weird side effects that scare me as well. I tend to be the type of person that gets all of the weird side effects. The one percent chance of getting I usually get and it’s not psychosomatic 😊
@ I have been on midodrine since summer . It isn’t a bad drug. What drs missed with me is I have invasive Candida that has affected my blood pressure. Had a blood test that showed positive for Candida. Now on antifungal medication. Have had Candida all my life I think passed on from my parents. Especially my mom she too has been chronically sick her whole life. I don’t even check my bp anymore as it works nice and slowly. What your dr prescribes should be ok for you. I take mine 2-3 times a day.
Glad you were able to find out about the candida problem. I’m hearing you’re saying basically you did not have any issues with midodrine you can lay down if you want or stand up if you want and no massive increase in blood pressure? If you don’t mind me asking, how is your level of functioning? Are you able to walk normally get around drive etc ? Sorry for all the questions and if it’s an inconvenience, you don’t have to answer but it sure would help me out a lot. I’m trying to figure out what to do. I’m pretty much debilitated at this time. Just want to get better.
Yes - my POTS appeared immediately after a prostatectomy cut a lot down there and now the top theory of my docs is my Vagas nerve was cut and disconnected my brain from the bottom half of my body. So ... NOW what? I can't just plug it back in!
I didn’t get POTS Til I was 52 had to diagnose myself til I went to Cleveland Clinic and was finally diagnosed by a Cardiologist there, three Cardiologist in California said it was panic attacks 🤷♀️
I had terrible tachycardia that landed me in the hospital after taking nortriptyline for neuropathy. Never understood what happened there and the doctor didn’t either but watching this made me realize I think I might have POTS. dizzy fatigue tachycardia random episodes but also postural. Tachycardia wakes me up in the middle of the night sometimes. It all makes sense now. I’m a nurse always suspected I had an issue with vascular laxity, don’t seem to adjust physiologically to a change in posture though my BP is fine my heart rate shoots up. And seem to be sensitive to anything that increases my adrenaline meds caffeine stress. I’m also quite hyper mobile. Too many symptoms more to list here but this has been eye opening. Interestingly I started ballet 8 years ago and always feel better with the symptoms on days I do class or am physically active. If I’m sick and lying around for a couple days the palpitations get so much worse.
Thank you for a most informative talk! In the 15+ years that I’ve had POTS, I’ve never heard any of this, or had any help from my GPs. Self help and Dr Google have been my only remedy. Some of the advice given is in direct opposition to that given for managing my heart failure and damaged mitral valve, e.g. use of diuretics/gliflozins. I think I’ll just have to carry on putting up with the POTS 🙃
@@Chris-g9i Thankyou, I have a friend with ehlers danlos and don’t have any of her symptoms. I’ve had m.e. for over 25 years and heart disease for about 15 years. The mitral valve damage happened after heart attack #8. I’m presently dealing with the surgical impacts of Dupuytrens disease, so collecting yet another medical label isn’t on my agenda 🙂.
@@corrinneloudon525 Oh, very sorry to hear that. Just fyi, there are 13 different types of Ehlers Danlos, so the friend comparison might not be the best way to self diagnose. Good luck; sounds like you’ve been through a lot.
I had a little cry hearing this angel of a Dr speak. He understood! He understood! How lucky are those POTS patients who get him as the Dr.
Me too!!!
I too had a cry and I believe it was because of this doctor's sweet manner and genuine concern for people struggling with this.
I wish he were my dr. Wonderful, exceptional human being, so caring 🙏🏻🙏🏻🙏🏻
I feel exactly the way you do
“Patients come first, definition comes after that”. Mad respect Dr. Gupta. I wish more doctors think like you do. We need to be reminded that definition criteria, tests/ investigations all have the potential of false negative and missing the outliers. Thanks for this amazing session
I love how he admits he went from a doctor with knowledge on how to treat people to a doctor with knowledge on how to care for people, that’s the shift we need to see from many in healthcare professionals.
I wish more docs were like this!
The more i search for medical content the more i find from this dr. He is what the system should be .
Understanding and listening is comfort for patients, so many are misdiagnosed and dismissed. Thank you
Wow just wow 🤩 dr. Gupta
I’m a personalized precision medicine doctor who treats such patients
This is the most comprehensive resource I’ve found
I’m so grateful for all your efforts
I love this man's spirit. I wish he was my doctor
@brainwithani5693 . . I wish that this Cardiologist could be my POTS Cardiologist, too. Dr. Sanjay Gupta is phenomenal💗
Omgggg how beautiful he grew so much as a doctor !! 🥺 I love this so much. ❤️ I just got diagnosed after 4 years of educating myself and begged for doctors to listen and I knew it was pots the whole time. Ugh there’s nothing like haven’t your life taken and a doctor loving you like there family to help fight with you.
I diagnosed myself...after 15 years. If you haven't read about leaky gut syndrome please add it to your list. I'm certain it is related to POTS. The diet saved my life. Thank you for being a doctor who takes the time and sorry you had to learn the hard way
You have such a good heart dr Gupta!!! 😊Apparently many drs don’t want to bother learning about this malady let alone treating it! I have experienced POTS off and on for several years now and have ME/CFS. Now my granddaughter has POTS really bad and was blacking out multiple times a day and no one would believe her and help her until she started having seizures. They all thought it was psychological because she’s a teenager. I was absolutely incredulous that no one except the school nurse was taking this seriously!
I have three children with special needs including my son who is severely disabled and in a wheelchair. I would be hopping mad that nobody but the school nurse was taken by it seriously. She should've been receiving better care than that from those dr's, as a parent that's appalling not to mention disgraceful.
How are you doing with your POTS/CFS? How is your granddaughter doing now?
What a beautiful & kind heart you have!
May you be contagious to Drs everywhere!
Thank you from the bottom of my heart.
21 years heath journey with #Myalgicencephalomyelitis #POTS #MCAS
Was diagnosed today, great info. Been walking around clueless since 2019
What we're your symptoms...
May God bless you. There sure aren't many doctors left like you!
You made me cry Dr Gupta, you are sooo compassionate. God Blessed you!!!
Wow. What a doctor. I wish I met such a doctor just once.
What an amazing example of patient centred care and a clinician that actually wants to help those suffering. POTS is a common symptom in long term (greater than 3 weeks) benzodiazepine use (tolerance, withdrawal, post acute withdrawal syndrome, benzodiazepine induced neurological dysfunction)
Oh. God. I started having POTS after a 10 days benzo use. All doctors dismiss and gaslight me. But I had no tachycardia at all prior to benzoes. Now it's been more than a year since then, my HR standing up is 130. When I lie down it's always 60-70. 4 months before benzoes I went off ssri rapidly. It might have contributed to me developing POTS
@@AlbaLynxQueen, which SSRI did you take? I am hoping that Zoloft will help me. Sea salt does not ALWAYS bring my BP up enough. I am now on saline solution, but it ONLY works while I have the saline put straight into the IV, and I feel ALMOST normal (without bloat, without dizziness, not passing out, good bowel movement, less headaches and body aches, BP & HR is pretty normal. . Yes, almost back to normal.). When the the Saline IV comes out, it’s back to feeling POTSY🙄🙄🙄
@@dva62004 I took Paxil. No POTS prior! When I went off, a few months later I started having tachycardia when standing. Paxil caused a horrible withdrawal and a cascade of new symptoms and health problems!
He is the best doctor ever! God bless Dr Gupta!!!
This was tremendously helpful. I cried during certain parts bc i have been struggling with this for years with doctors dismissing me. It started a few years ago with either COVID or i had a surgery that removed my ovaries and then was put on estrogen/progesterone hormone replacement - i don't know if was covid or the hormones bc they were at the same time. I had all these symptoms to a lesser degree all my life (i thought everyone struggled with them! 🙄). But when those events happened in my life - this condition became literally debilitating. I thought i might be dying. As i listened to this, i cried with relief and validation. Thank you🙏💜
I'm betting it was Covid.. alot of people developed it after a Covid infection.. it exacerbated mine terribly, still struggling...
How are you doing now?
I have been suffering with this my entire life! It’s so refreshing to hear a doctor who actually listens instead of dismissing patients who have difficult medical issues! I was told I had fibromyalgia when I was in my 20’s and have carried that diagnosis around since then. It seemed to fit some things but not all my symptoms. My daughter was just diagnosed with EDS and is being sent to a geneticist. It answers all of our symptoms finally! And Dysautonomia is a comorbidity of EDS! Thank you for this information! Maybe now I can take some of this info to my dr and see where we go from here…..wow
Look up dr Sarno TMS for your fibromyalgia
Same
What tests what company ?
Do you remember price?
Did you ge tested and daughter?
What helps you ?
Do you at all experience internal vibrations?
Would love some help
Wow! I have suffered my entire life too! Drs just give me the look.. it is miserable
@@TheBushRanger.Yes with asperger's were sarnos.ultra perfectionist s
Is it possible to Love a doctor, you've never met, that is half way across the globe because he understands your problems more than any professional you've ever sat with?
Why yes.... Yes it is.
So you ever visit the USA?
I would travel to meet you to just say thank you.
Wow. This apology made me tear up. Thank you.
This is amazing. Thank you so much. I was diagnosed two weeks ago by a cardiologist. Wafted a few years of being told by everyone (family and GP!) that I had anxiety.
WOW FINALLY SOME ONE WHO TRULY UNDERSTANDS POTS
Dr Gupta has saved my life. I've felt unwell for years and over time my symptoms have worsened and are now so debilitating I'm unable to function. My appointment with Dr Gupta gave me hope knowing that even thought I've been diagnosed with a chronic illness and there is no cure, he will help. I thank you Dr Gupta 🙏 for everything you have done for me this week. I'm so very grateful 🙏. Maria Flower
I love his honesty 🙏 & integrity
Thank you so much! I developed severe pots after the covid vaccine, but I have had raynauds, ibs, anxiety, and hyper mobility my whole life.
Same with me
Any pain
There is a link with hyper mobility.
How are you doing now?
This is the most detailed thorough explanation of living with pots I’ve ever heard.
Wow ! Finally a diagnosis that fits me to the point . All this time I’ve been suffering ( 18 months with no diagnosis or treatment plan. Meds after meds that had nothing to do with the my symptoms , agony . My B12 and Immune system is very high w/inflammation where I am sensitive to too much heat and cold . On top of everything I have neuropathy and a swollen esophagus that feels like I am carrying 50 pounds around my neck . I need peace 😢
Thank you for taking time to help us. It’s hard to deal with , honest human being willing to help .
Look up MCAS
Same here B12 is high, esosonfilia found in biopsy after colonoscopy, ME/cfs, fibromyalgia, ADHD and long covid
I am 79 years old, have had ME/CFS for 50+ years, but acquired POTS (including all those other dysfunctions on the list) a couple years ago when my PCP put me on a diuretic for B/P. He then wanted me on a reconditioning exercise program. I refused, and had a blood test done through another doctor: my electrolytes were severely depleted. Discontinuing the B/P meds and concentrating on intense restoration of electrolytes and other depleted nutrients has helped reduce the POTS heart rate, eliminate IBS, improve sleep,
How are you doing now?
@@tanyawieczorek6603 I got tired of spending my life in bed while trying to get treatment for POTS, so on my own about a month ago, I started getting IV therapy. Since I know that electrolyte and nutrient deficiency caused the situation, I started with a dehydration IV that includes electrolytes and minerals, not just sodium. Now I have a few days at a time that I can be on my feet long enough to get my laundry done or to load my dishwasher. Besides slowing my heart rate a bit, the IVs provide better pain control, ability to digest food, to read for a short period, sleep better., ability to open bottles and jars. Though my PCP made a referral to cardiology to treat my POTS, there do not seem to be any who treat POTS in this area. So, I am hoping to convince him to at least get the IVs covered as well as periodic blood work to monitor electrolytes better.
1:24:00 Your compassion is incredible. Bless your heart.
I've come to this video after suffering from symptoms like POTS for about 2 months now. It was scary to have my heartrate spike up, going to the ER, not knowing what I had, etc. Working on getting a diagnosis for POTS, but the soonest I can get verified is mid November. I've been trying my best to hydate and take some salt tablets, and keep mobile.
How are you doing right now??
@@zory1111 I'm still having a high heart rate when I'm up right, although I've just been drinking plain water until I get an official diagnosis just so I don't overdo it with the sodium.
I was born I'm with this I was in 15 Forster Homes and my adopted parents said they never would have adopted me if they knew how sickly I was a kid I and still am. And then I got denied for 13 years for SSI and repeatedly tried to kill myself because I was kicked out of my house at 18 for whatever reason, and was to sick to even get out of bed and still am let alone work. I finally got on ssi because of the effects it's had on my body in my 3s❤0s has caused me severe mental and emotional issues were I spent 70 ish times in mental institutions and behavioural instations. I never got to live out my life instead I like my "angel mother from Philadelphia" I had to have my entire life spent in bed and all my relationships were only spent with whoever would show up and hangout. 😢
finally, a real doctor. rarely you find those.
That would be me! 2 years of ER visits and constant research! Today I realize this is what I'm experiencing for the past 2 years.
Me too! I feel this so much! Really hits home!
I really want to add also that with my experience in reading a lot of people's symptoms, that I've noticed most patients with pots or dysautonomia have low heart rate variability. (HRV) not heart rate, but the variability. Low heart rate variability is crucial in this illness. It causes the exhaustion, the irritability the lack of get up! It directly relates to the autonomic nervous system. I got an apollo watch, that seemed to help with it. But I still have HRV in the low 20s most days! There are so many facets to this illness and I'm so glad it is getting the recognition it deserves! There are so many of us suffering that have been diagnosed with anxiety for way too long. It's a debilitating feeling and I am praying that soon I will be able to find a Dr who will help me. Who will listen and not just tell me to drink more water which I already do 😓
How do we find put our heart rate variable? Low? Does it worsen at night?
EVEN WHEN I DO CARDIO, IN THE EARLIER DAYS, I COULD NOT GET MY HEART RATE UP TO 120. I THINK YOU HAVE A VALID POINT HERE!!!
My POTS doc says to use my fitbit HRV readings as an early warning if they're significantly low for 3 days in a row - I'm at risk for collapse!
Sure enough I'm at a job called "Resto" where I walk a line of people to pick up the detritus left by 80,000 participants at Burning Man... I collapsed.
I'm typing this from bed and only ate 1/3rd of my 1st breakfast in 2 days!
What do you consider "low"?
I run about 23ms HRV as a midpoint when I'm more functional.
I had 14ms HRV for 3 days in a row when I crashed 2 days ago.
Is that "low"?
Yes, my HRV is very low
Have had this for years with all sorts of dx from mental, nothing, to finally autonomic disorder. Qigong, yoga, selective healthy eating, supps- well researched, meditation, energy medicine have helped me 99% more than gabapentin, blah, blah. I just love your purity intention to know & serve people the truth. Now have heart failure & just know it is related.❤❤❤
Do you mind sharing your supplements regime? I'm just dealing with this now
This guy is everything that distinguishes physicians who want to relieve suffering as opposed to those who just want to relieve your insurance company of a ton of money
If not forDr Gupta I would have never had a clue what was wrong! Eternally grateful! ❤
How are you doing now?
I love this man!! What a hero!!
I'm currently seeking a diagnosis but since some friends have brought POTS to my attention I feel like there is finally hope!!! I have had a mountain of symptoms for 11 years, starting when I was 16. I have been to so many doctors and taken so many trips to the ER but always get turned away without answers. I have been diagnosed with anxiety disorder, but I've always felt there was something more to it. I had covid in September and had horrible brain fog and fatigue that never went away. My other symptoms have worsened as well. In November I had a really bad spell of high heart rate (reached 180 at one point) and extreme lightheadedness and dizziness on top of the worse brain fog and fatigue I've ever experienced. I thought I was dying. I think covid brought out my underlying condition which I'm 100% positive is POTS. That possibility connects ALL of the dots for me, especially all of the things I thought were unrelated such as foot pain & extreme photo sensitivity. My PCP thankfully knew about POTS and was very supportive of me wanting to investigate POTS further and gave me a referral to the cardiologist, so now I'm waiting to see seen by them.
DR ROB WILSON AT CLEVELAND CLINIC HAS BASICALLY SAVED MY SANITY AND MY LIFE.
@@lizinawe how did he help you?
Autumnrose, how are you doing now?
@@tanyawieczorek6603 So much better. I ended up seeing a functional medicine doctor because my pcp couldn’t really treat it. My functional medicine doc knew all about it though and put me on herbals and instructed me on lifestyle changes to make. After his treatment I felt relief from my crazy symptoms in less than a month. Now I’m at a point of just being careful not to aggravate my symptoms, but when I have a flare I know what to do.
What a wonderful doctor the world would be a better place with more Dr Gupta
I’ve had rapid heart rates I’ve got CFS and fibromyalgia
My son is experiencing the same he’s been checked and heart is ok but they don’t know why he’s generally not well daily
Do your muscles hurt everyday sure fybromyalgia is a symptom of cfs
How are you and him doing now?
Thank you thank you thank you for this. You have no idea what this video meant to me. 🙏
Outstanding video. The most helpful thing I’ve heard applauding you Dr.Sanjay
Dr Sanjay Gupta, Thank you so much for taking the time to help educate/inform us♡. This was an excellent presentation.
#drsanjaygupta
I'm not sure what award Dr. Gupta should get, but he should get something for being such a warm and caring and dedicated physician! I greatly admire his attitude and his work and it's wonderful that he's helped so many people with this condition. I believe I had pots or dysautonomia at a young age maybe around 8 years old because I started to have near fainting episodes when I would stand up too quickly it went on until I was about 50 or 55 years old just maybe 10 years ago. I think because my blood pressure naturally went up as I aged it took care of that near fainting. I never had tachycardia, but I do have intermittent atrial fibrillation and I have a histamine intolerance now. It's all kind of coming together and I've also suffered neurologic pain syndrome. If I had had a doctor like Dr Gupta my life probably would have been a lot different.
Rewards in heaven for Him
Thank you Dr Gupta 😘
Amazing minds and Leaders are rarely satisfied with the Status Quo, especially when there are so many questions and much unknown. And more to be done. Dr. Gupta is one of those people. He's always searching for more. Mediocracy is not his thing. Thank God for people like him in the Medical Field. He sacrificed and worked hard to become the doctor he is. He will never stop growing. 🙏
Thank you so much!
Awesome presentation. Very clear and well understood. Thank you for caring for the person and take time to make videos an helpful advocation. We need more Drs like you. I wish I could come to you as my Dr. Where are you located?
This is incredible thankyou so much for sharing your expertise
It seems like Dr. Sanjay Gupta has mostly come to his senses around recommending IV Saline and that's great to see. I was concerned when he thought it was a good solution.
Please put another video on RUclips!! This one is for Pots patients and there are many more of us with other problems who enjoy your presentations.
Thank you so much Dr. Gupta! For this video.
I'm on iv hydration at 100ml and hour for 21 hours a day. I have a CVC central venous catheter, have had it for years . I have severe mast cell activation disorder and Dysautonomia. I'm on a bunch of IV medications for my reactions. I been on SQIG for my Dysautonomia, and it has been a game changer.
Thank you for helping us patients with these medical conditions ❤️
Starr Andrews Strong HG Activist
Hyperemesis Gravidarum Before During And The Aftermath-HGBDATA
Wonderful doctor wish they were more
Fantastic interview, thanks 🙏
Thanks so much my prayer is : MORE Dr.s like u!!!!!! 🫶🏿
A Remarkable Doctor!
My favorite Doctor
I was fine, about to hike 4000ft mountains. Athletic all my life. At 56 last year got Covid twice and Lyme disease, Bells Palsy. in between that. Never been the same. So long Covid? But my symptoms fit into POTS and MCAS. I take walks but have to walk slow or my heart tachs right up. Forget going up hills. Fatigue, chest pain, guts are a mess and sleep sucks. I am hoping things improve in time but underneath I am don’t believe I will ever be the same. I am trying to learn to live my new normal. I did have to take 6 months off from work because the fatigue and symptoms were too much. I am back to work but can only tolerate a 25hr week. It’s really hard as I am a type A busy kind of person.
This is what happened to me also. But my fatigue is more severe and I am partially bed bound.
Thank you ~ it's not a disease, it's a condition. I can't take those meds because I have low bp and ischaemic heart disease. I have Dysautonomia (worse than ever) following a Covid infection. There are SO many of us.
MCAS is something you want to check into if you got worse from covid. Seems to be a triad with EDS, POTS, and MCAS. They think it's caused from MCAS. Mast cells are behind long covid and the odd overreactions. It's another route to try.
Yup 2 bouts of covid messed up my POTS greatly.. bloody effing man-made bioweapon!!
How are you doing now?
This was an excellent presentation, Dr. Gupta! Long overdue and much needed. Thank you for being the Doctor who was willing and dedicated enough to take it on. A curious, hard working and caring Cardiologist!
he's soooo nice. i want to cry
Wow you are an amazing Dr , I am a 3rd generation within my family, with fibromyalgia, hypermobility, gastrointestinal and ibs issues, we are constantly anemic and we are getting worse especially my mum
Yes! Hormonal changes are huge! Right before menstruation, longhauler symptoms like muscle weakness & POTS surge to the point of disability. Hormonal pill greatly reduces symptoms & restores my health to the point of almost complete functionality. Had been on the bc pill for ten or so years, but went off of it preCOVID. Now back on it & it *greatly* reduces my POTS symptoms. Life-changing.
Thank you for confirming this & please tell everybody! :)
Wonder what the male hormonal equivalent is?
Interesting! I’ve been thinking that’s what caused my symptoms. I’ve been off BC pill for 11 months before I started having POTS like symptoms. I have PCOS so that’s why I was put on bc pill but then decided I want to manage my PCOS naturally.
In the last month, my heart rate shoots up so high during the night (while lying down) so that I have not been sleeping for like a month now.. it’s absolutely debilitating.
I went to ER twice, did bunch of tests, and nothing would explain why I feel this way. Though they discharged me a cardiologist referral. Still looking for answers :(
I have suffered since a teenager. No doctor could tell me what wrong. Started doing my own research and came across POTs. I was relieved. I was already taking propranolol for fast heart rate and told it would help my anxiety.
Has it helped??
@@MaxPayne-fi1mz yes it does
@@Kb-mx8lv Do you think you will have to be on beta blocker for life?
Is there any way to download a transcript of this video? Great information!!! Thank you!!!!
I wish he could be my doctor. Developed POTS due to Covid and none of the doctors I see can help me.
I wish my daughter could find a doctor like you in San Diego. They all want you to fit in their box for their specialty. It has taken a year to even get an appointment. Most doctors just don't care or won't take the time it takes. The patients aren't able to fit into a 15 minute appointment.
Hi, have you found a good doctor in San Diego for this ? I am in SD and looking for one. Thx !
Watching from the US . Enjoyed the education. You are not only a great Doctor but an incredible human being. God richly bless you as you take care of his children. What happens if you have high blood pressure and on a sodium restricted diet regarding sodium intake? Thanks so much.
I feel I also have this, started after COVID in November 2020. A year ago after much researching multiple symptoms, my PCP basically laughed at me and said no way. Mine start when I wake up and walk to bathroom, by the time I get to the toilet I am tingling from head, down my arms, across my chest feeling as if I am on fire, start pouring sweat and have actually passed out several times, losing control of my body and functions. I am constantly tired, do not sleep well or normal at all. Have a flutter in my sternum often and heart rate goes up and down regardless of what I'm doing. It's scary and debilitating. Actually my chiropractor and his naturopathic brother have told me they're sure this is what I have.
Anyone else have these or similar symptoms?
@@aaltimore522Yes, I have very similar symptoms and I am diagnosed with POTS
I was able to maintain mine with clean eating and exercise, haven't had an episode since June of 2022....when I'm not eating well I can feel it creeping in and it gets me back on track in a flash. I never ever want to feel like that ever again.
@@aaltimore522Good for you but it’s hardly the solution for everyone. While most people have a different understanding what „clean“ means, I was certainly eating very heavily and exercising 6-7 days a week. After Covid triggered Pots, exercise makes me ill. I love it, but any time I go back to my old hobbies, I gain 10 lbs in water retention and get really sick (6 cases of severe bronchitis in 2 years and 8 courses of antibiotics, which then led to repeat deconditioning and a worsening of Pots). Post exercise malaise is a huge issue for many patients with Pots.
@@aaltimore522Can I ask how are you now ?? And what kind of diet did you have ??
Thank you!!!
I wish I could get an appointment with you, I'm so frustrated with my GP. It took me 6 years to finally get an M.E diagnosis, and the last few years (worse now) I've been having dysautonomia symptoms, POTS especially. Pounding heart just from standing, often losing my balance and feeling really sick. My heart rate raises from 80 bpm to 130 just standing. I also get the pounding heart after eating, and night time anxiety. 6 years of feeling ill and not being believed . 😞
Consider having your iron levels checked, anaemia can cause similar symptoms.
I’ve had POTS for over 25 years and still can’t find a way to control it.
It’s important to know that preemies experience dysautonomia because their automatic reflexes do not coordinate well, this often does does ‘catch-up’ especially if you were born less than 32 weeks GA. Under stress or stimulation of any kind they experience orthostatic hypotension (bradycardia), while late preterm (34-37 weeks) experience tachycardia.
Abnormal Baroreflex sensitivity,
Whereby the baroreflex does not coordinate with the parasympathetic or sympathetic reflexes, resulting in episodes of hypertension (tachycardia) and/or hypotension (bradycardia).
This helps explain avoidant behavior-must stop, rest, recover.
Thank you
I wish I lived in England. I ironically live in Calgary Albert where Dr Raj is located but not only does he not have any time for his patients but he doesnt seem to give a single shit AT ALL about us. I wish I could see Dr Gupta. 😢 I dont even want to be alive anymore because this illness has stolen everything from me and no one has been willing to help me for 3 years now. I'm in a prison that is literally my own bed.
Been there and living it still 26 years HDS Asperger's add how are you now have you got much pain check out Dr lenz Dr schubiner where us Dr Raj based England is not good for these conditions
Good Doctor,
You are making this world a much better place. I wanted to report that I sustained triple negative breast cancer in 2013, 2013 while leukoplenic caught a respiratory infection. This post-viral illness segued into ME (myalgic encephalomyelitis). 2014 advanced basal cell whilst immunocompromised on my left scalp>split thickness skin graft to approximate the head wound slightly larger than the size of an adults palm. 2016 triple negative breast cancer chest-wall recurrence. Bedridden for 8 years. Severe chronic pain.
Hence CIPN chemotherapy induced peripheral neuropathy, Dysautonomia, right-sided low atrial pressure, negative full cardiac work up but continued with incessant, sharp, chest pain.
Now, finally to the point!! My ME/CFS MD in Boston, Ma, David Murray Systrom and his PA have RX’d Pyridostigmine (Mestinon) now for over three years. Chest pain 100% treated. My current dose is 30mg three times a day. I feel much better, can be somewhat active-ish, and drive again. You and Dr. Systrom are of the same cloth>practicing patient-centered medicine. Respectfully, Katie
Your comment broke my heart. I also saw Dr. Raj but he didn’t have any advice for me other than the basics.
I had to become carnivore. Only beef and salt. It’s changed my life. It is awful, but I can stand for many hours now. It took 3 months to adapt and it was really hard. I also treated a double MTHFR mutation, went to NUCCA to realign C1 and C2.
Don’t give up! We are all laying in our beds crying with you. You aren’t alone! We all will keep fighting to get better and fighting for more solutions!
I was finally diagnosed with Pots after suffering for 2 years after Covid. Unfortunately, I was told to decrease my exercise and increase salt and that was it. Even though I have the Pots black on white, my other doctors I tried to see about MCAS and other issues often associated with Pots still dismissed me. Am printing out all the studies I have read and going back next week. Really hoping they can do something because I cannot and will not live this way for another 50-60 years. With Ivabradine, I can swim a bit without a HR of 180, but now the fatigue and brainfog are so bad again, I can’t work at all anymore. It’s ridiculous.
It was only after LAD stenting did my heart beat strong enough to feel the pulse in my head did I realize what was happening. As I stand, my heartrate skyrockets and my blood pressure plummets
I spent over 14 years saying that I thought I’d got Pots. No one listened to me and no one believed me they thought that the Cardiologists knew best. I was like a broken record but I never gave gave up. Then two doctors individually in A&E told me that that’s what I’d got. One said that I had symptoms that I didn’t know about and the other one gave me a print out. What did my doctor do? She sent me to a cardiologist for two years and when I told him what the two doctors had said he said “What do they know?” and he kept prescribing medications which made me so ill. I made an appointment with my doctor. She asked me how I’d got on and said that he can be a bit strange. I said that I still thought that I’d got Pots and she said “So do I.” But she didn’t know where to send me. I told her that I wanted to be referred to Cardiology at the LGI. I saw a doctor with a special interest in Pots and he diagnosed me. He also wrote a letter that I could take to A&E asking if they’d give me IV fluids. No one had heard of Pots. I’m relieved that some Pots sufferers don’t have to fight as long as I did these days.
Wow the other, I am not crazy, on top of 4 autoimmune conditions realising that this also is part of what I have been living with and telling drs who don’t believe me 💚💜💚💜
Wow i really wish my daughter could see soy😢meone like Dr Gupta, he really understands n explains everything
I have every symptom listed. Raced professional motocross for 15 years and get winded carrying my 8 month old to the car now. What got me was when you stated patients complain of palpitations when standing still but go away when walking. Testing today my heart rate was 60 bpm sitting with my feet up. I stood up and walked around and it went to 115-120. As soon as I stopped walking I felt pressure in my body and my heart went to 140. It took a couple minutes for the racing to stop and as soon as I stated walking again it would go back to 90. It's so frustrating. I wonder if it goes down when walking because muscles contract and vessels pump the blood back to the brain and heart easier. Also could the delay in vasoconstriction cause too much adrenaline to be released giving anxiety attacks?
Can you please send the slides from the talk? I can’t see it on your website thanks 🙏🏽
31:25 I'm listening to this during Christmas 🎄 season. I look over at my phone and see the Grinch 😂😂
Im a 73 year old woman. I got covid for the 3rd time in march. Sence than i have been suffering fron all the systomes you talked about. It has taken all my energy to type this. What is going on. I was VERY active 3 months ago i could out work any man. Now im weak as a kitten.
COVID 19 is not just a cold and each time we get it you get more damage!
Check out M.E/CFS to learn more about your condition...
This man is Dr God .........x
He is not a god at all
Thats not for you to say. He's a wonderful Doctor and a God to some!
@@peggymicsky8607 it is for me to say there’s only one God creator of heaven and earth. I would never call a man a God.🙄
I'm seeing Optic Nerve Atrophy at age 51 after decades of random visual dimming. Any connection to lack of blood to brain and a die off of Optic Nerve? Referral to Neuro-Opthamology, but 4 month wait list.
Regarding tilt table, esp. for kids: it is not necessary to strap someone to a tilt table. You can just have the kids lie down for 5-10 min, monitoring hr and bp, then have them get up very quickly and again monitor hr and bp. If hr shoots up more than 30 beats per min while bp stays steady, it’s Pots. If bp plummets, it’s orthostatic hypotension.
Stay positive. We are too hard on ourselves.
On Midodrine here FANTASTIC DRUG ! ❤❤❤ I think slowly getting my life back…..been hell for years with POTS. A MIRACLE I NEVER FELL DOWN OUR 2 flights of stairs in this house. Felt drunk half the time couldn’t walk straight. YEARSSSSSS WITH POTS. Lower dose did zilch for me , got on to 10 mg 3x daily fast. No results on lower dose. Sleep on an incline pillow.
I was prescribed that medication but I was scared to take it because the doctor mentioned that it raises your blood pressure greatly if you lay down so you can’t lay down for at least four hours after you take it. And since laying down is my biggest relieve it kind of scared me. Can you please share your experience with mitodrine in more detail? Also, did you have any success with adding extra salt and water into your diet? And are you taking any other medication’s for pots? Thanks I’m desperate for help I’m supposed to also start on a new medication guanfacine to replace metoprolol, but that one has some weird side effects that scare me as well. I tend to be the type of person that gets all of the weird side effects. The one percent chance of getting I usually get and it’s not psychosomatic 😊
@ I have been on midodrine since summer . It isn’t a bad drug. What drs missed with me is I have invasive Candida that has affected my blood pressure. Had a blood test that showed positive for Candida. Now on antifungal medication. Have had Candida all my life I think passed on from my parents. Especially my mom she too has been chronically sick her whole life. I don’t even check my bp anymore as it works nice and slowly. What your dr prescribes should be ok for you. I take mine 2-3 times a day.
Glad you were able to find out about the candida problem. I’m hearing you’re saying basically you did not have any issues with midodrine you can lay down if you want or stand up if you want and no massive increase in blood pressure? If you don’t mind me asking, how is your level of functioning? Are you able to walk normally get around drive etc ? Sorry for all the questions and if it’s an inconvenience, you don’t have to answer but it sure would help me out a lot. I’m trying to figure out what to do. I’m pretty much debilitated at this time. Just want to get better.
How can contact you.. I have chronic symptoms and need help please
Is there a c1q deficiency connection? My daughter also has mass cell disease and ehlers danlos, now lupus
POTS isn't a heart condition. It's a problem with the Vagus nerve.
Yes - my POTS appeared immediately after a prostatectomy cut a lot down there and now the top theory of my docs is my Vagas nerve was cut and disconnected my brain from the bottom half of my body.
So ... NOW what?
I can't just plug it back in!
I NEED TO FIND A DOCTOR WHO UNDERSTANDS THIS CONDITION 😡 😢
I didn’t get POTS Til I was 52 had to diagnose myself til I went to Cleveland Clinic and was finally diagnosed by a Cardiologist there, three Cardiologist in California said it was panic attacks 🤷♀️
How are you doing? Have you found any relief and if so, please share what you’re doing that is helping.
I had terrible tachycardia that landed me in the hospital after taking nortriptyline for neuropathy. Never understood what happened there and the doctor didn’t either but watching this made me realize I think I might have POTS. dizzy fatigue tachycardia random episodes but also postural. Tachycardia wakes me up in the middle of the night sometimes. It all makes sense now. I’m a nurse always suspected I had an issue with vascular laxity, don’t seem to adjust physiologically to a change in posture though my BP is fine my heart rate shoots up. And seem to be sensitive to anything that increases my adrenaline meds caffeine stress. I’m also quite hyper mobile. Too many symptoms more to list here but this has been eye opening. Interestingly I started ballet 8 years ago and always feel better with the symptoms on days I do class or am physically active. If I’m sick and lying around for a couple days the palpitations get so much worse.
Check into MCAS as well.
Thank you for a most informative talk! In the 15+ years that I’ve had POTS, I’ve never heard any of this, or had any help from my GPs. Self help and Dr Google have been my only remedy. Some of the advice given is in direct opposition to that given for managing my heart failure and damaged mitral valve, e.g. use of diuretics/gliflozins. I think I’ll just have to carry on putting up with the POTS 🙃
Have you been evaluated for Ehlers Danlos? Mitral valve problem + pots is usually a dead giveaway
@@Chris-g9i Thankyou, I have a friend with ehlers danlos and don’t have any of her symptoms. I’ve had m.e. for over 25 years and heart disease for about 15 years. The mitral valve damage happened after heart attack #8. I’m presently dealing with the surgical impacts of Dupuytrens disease, so collecting yet another medical label isn’t on my agenda 🙂.
@@corrinneloudon525 Oh, very sorry to hear that. Just fyi, there are 13 different types of Ehlers Danlos, so the friend comparison might not be the best way to self diagnose. Good luck; sounds like you’ve been through a lot.
1:07:23 aren't rigid veins associated with heart disease?
Where does Dr Gupta practice?