The first time I finally found a doctor who listened to my symptoms and didn't try to gaslight me, I broke down in tears. This has been a terrible experience. We don't need our GP's to have all the answers. We just need them in our corner. We need them to listen to us and to try to educate themselves on long covid. They can say, "I don't know how to help you." They just need to try and not let us feel abanded by the entire medical profession we have access to, which is very little when they are not open to not having all the answers.
This has been the experience of so many people with CFSME. I worked in services as an occupational therapist and heard hundreds of stories of the long frustrating journey to get a proposed diagnosis by a GP or specialist Consultant and get referred to our service for confirmation of diagnosis and therapy.
" you only need one doctor to care" . How very true that statement is . My GP admitted that he didn't know what to do re my post covid symptoms but he acknowledged my brain fog , dizziness and fatigue and instigated a long covid assessment and MRI . I sat in his office in tears explaining that this disease had floored me and that this illness isn't psychosomatic when prior to covid I worked full time and was a busy mum of two . Thankyou for this great video .
@@EllaSloman yes I've seen about 4 different doctors. Some are sympathetic then others. I've been told I'm chasing after a unicorn. They dont have a solution of answer for me cause tests are showing "normal". I'm just relying on jesus and having faith during my recovery
I can certainly sympathize with your case. It's all over my medical records "extremely anxious over covid diagnosis "... My doctor retired. It makes me very upset. I have been struggling to breath intermittently since May 2020. It's aweful
I had long hauler after having severe covid symptoms for 40 days and couldn't breathe properly for 14 months.My nervous system was messed up for many, many months.I had brain fog, sharp pains, cognitive issues, memory issues, crazy high blood pressure, off and on...Everything got much better with time and 14 months later,one day, I woke up, and I could breathe! Have heart that it may just take time for long haulers symptoms to go away.
Thank you for sharing. I'm having really bad postural tachycardia and I'm starting to become depressed and feeling like my life will never be how I wanted it to. Only 27, feels so unfair but I'm trying my best to stay optimistic
Problem is if you get anouther cold or any infection it rears its ugly head again and you go back to square one,that's what's been happening to me,started 2006.
If POTS had been taken a bit more seriously before Covid, we most probably wouldn't be in such a bad situation. Feels like my doctors are running around like headless chickens trying to work out what to do about it. Most long haulers i speak to have this now.
Hello Sami. Exactly. I share your frustration. The only thing we can do is learn everything we can and treat ourselves accordingly. I don't look to the average medical practitioner for validation nor support. Most are useless parasites. How many longhaulers can afford to see these rare specialists like this brilliant physician, or even have access to them? I don't need to be gaslighted by uninformed nuts.
@@barbarawarren9443 You are sadly correct... They often come from afar to live on local populations they have no affinity to - just see them as a means on the the way to filling their international bank account...
@@barbarawarren9443 keep pushing, I had to ask for a new Dr. & he just validated my symptoms, apologized for the "idiotic healthcare system" AND wrote a referral for me for a post-covid clinic, as well as updating my chart! FINALLY!
Wow, knowing that only 15% of people are getting back to normal is a little terrifying. I've been getting back to running for the first time in ~1 year without my inhaler and am noticing some interesting heart rate behavior. My heart rate will spike at the beginning (doing the lightest of jogs) and actually go down as time passes while keeping at the same pace. I found myself able to do an all out sprint towards the end because, as I've been telling myself, my body has readjusted to realizing I'm not being attacked by a bear. Very weird stuff.
I discovered that I have POTS right after Omicron, because I had been wearing a Fitbit for awhile, but suddenly my heart rate would jump into the cardio range just going to the bathroom during the night. I started racking up an hour of cardio range heart beats every day, despite being mostly in bed due to fatigue and dizziness. My cardiologist diagnosed the POTS, but gave me no help other than to tell me to keep doing the yoga classes that I had been doing. Good advice, but I feel like I am going to fall over in the standing condition, and am completely wiped out for the rest of the day after doing it. Looking for help, but we don't have a long covid clinic in my city.
My theory is that it's vagus nerve inflammation, sending the body into fight or flight mode. I noticed that if I take a little electrolyte things calm down. Like my electrical signalling system has become stuck or dysfunctional
As ever, a wonderful and informative video. I have dysautonomia, there is no doubt about it. I am also a clinical psychologist and have been working for years with referrals from people who have suffered from chronic fatigue. The doctor has given a 'diagnosis of depression. Ironically, as a clinical psychologist, I never start with the psychological before I am convinced there is no underlying physical condition. I have often sent people back to their doctors where they have had further tests done. It has almost resulted in serious diseases being missed, including cancer and pernicious anemia. Depression is a symptom, not a disease.
Wow, Wendy, I am going to try to find you . . . what state/country are you in? I am regularly handed anxiety referrals, when I have auto immune inflammatory issues of all kinds. Do you video conference? I am happy to 'apply' - I'd be thrilled.
@@eugeniebreida1583 I live in South Africa. I qualified as a registered nurse before I went back to study Psychology. My own journey started with Chronic Fatigue at a very young age after suffering from Glandular Fever. I remember the humiliation of being told that it was all in my head. It made me very aware of the need to listen.
@@wendyhay1302 Thank you for following the professional path you have- we need so very many more like you. I am sorry to hear you are now? suffering dysautonomia, . . . as a result of Covid.
Depression is the only suggestion for what is wrong with me that I have ever gotten from a doctor, no matter what my symptoms are, no matter how many different doctors I tell. I had mono sixteen years ago, and chronic fatigue best describes what I was left with, not that a doctor would say so. I also started experiencing whole body pain on and off, and over the course of two years it became more and more frequent until it was an every day thing. I haven't had a day without pain for 14 years. The chronic fatigue and pain are the two things that always stick around, but I have had all kinds of other issues, major crises of health that always get ignored. Severe gastrointestinal issues coupled with weight gain while I was only eating around 700 - 900 calories a day. My doctor did not believe that at all. He told me to eat less, exercise more, and quit complaining. Then he offered me antidepressants. It took me years to mostly solve my stomach issues and stabilize my weight so at least I was not gaining, but I find it quite literally impossible to lose weight. What else? When my VERY heavy periods practically turned into hemorrhaging, I was told by my gynecologist to take advil, and maybe consider getting treated for depression. That was it. The last time I even tried to go to a doctor and lay out all my symptoms she didn't say anything to me at, she just gave me a dirty look and walked out. After a few minutes a nurse came in to escort me to the front desk to pay my bill. Four years ago I had a period where I was experiencing shortness of breath, not too bad at first but it slowly got worse until I woke up one night really feeling like I couldn't breath. When my lips turned blue my husband begged me to go to the doctor, but I sent him out to Walmart to buy a can of air, a can of oxygen that they sell to the tourists where I live because the altitude around here can cause altitude sickness. I have left out a lot of the details about what I have gone through with doctors because writing it out would fill a book, but this craziness with the can of air was due to me not trusting that they would do anything for me at the hospital, except maybe give me oxygen. No matter what happens to me doctors claim there is nothing wrong with me and I should look into getting treated for depression anxiety. I didn't see the point in wracking up a huge emergency room bill for a little oxygen with a side of disbelief and condescension when I could get a can of oxygen from Walmart for $15.
If there is a God I hope you are repaid for being such a good and caring person and not just collecting your check. Thank you on behalf of those you have cared for and really helped.
One good thing, one bad thing. I finally got a neurologist to diagnose me as POTS/dysautonomia. Bad thing. He said "There's nothing I can do for you." Still, not knowing was worse.
I put my post covid pots symptoms in remission by doing cold showers for 6 weeks. A doctor I work with says this has seen the best treatment she had seen for those healthy enough to do cold showers. She also recommended weight training once substantial improvements were seen.
I agree, i started cold plunging and have seen huge improvement. I wouldnt say I'm cured, and some days I have bad days. But cold plunging has helped me tremendously with Anxiety and with some other symptoms. By it improving my anxiety it has overalled improved my health. mental health and the other physical symptoms are somehow connected. So less anxiety will improve but not cure you.
I had pots before covid I put it in remission doing this as well in 2019. I have it again after covid, and itz worse than last time, but getting better also taking alot longer. I stopped working out for 2 months in 2019 and just distressed. I wasn't even able to workout at that point without feeling short of breath. I took cbd, did hot baths and cold showers with sauna as well. Smoked a little weed too, I just completely destressed myself as much as possible. Anything you did particular that thinks made a difference? Timing of the shower?
@Lukas Kidd I believe it has to do with forcing your vagal nerve to connect with your autonomic nervous system due to the cold shock. There is damage in nerves from covid and it forces a reconnection and healing and some say a boost of serotonin which also gets depleted from covid. Studies have been showing ssri depression meds can help with covid due to keeping serotonin in the synapses of nerve cells.
@@jarrodmurphy9783 Do you think it's safe to try cold showers for Hyperadrenergic POTS/possibly a higher degree of parasympathetic dysfunction? I feel like if your nervous system is overactive, the best thing you can do is try to achieve a rested state; and cold showers are unfortunately like a short, but incredibly intense, exercise, only cold showers would certainly trigger a massive adrenaline rush. That doesn't seem safe to me specifically for those of us who are hyperadrenergic, even though I'd be willing to try anything if my location was warmer.
I got POTS from covid. I'm holding back tears for the people who had this for many years. I was told I have anxiety and panic disorder. I needed to speak to a psychiatrist... They tried to give me meds. Thankfully I listened to my gut and didn't take it. I was "normal" before this happened. Not was going on to bring me anxiety. They never listened to me. I had to leave the state just to find a Dr. That would. I wish everyone comfort.
My biggest concern is if we have both CFS/ME along with POTS as the exercise won't help and we'll just be stuck in a loop. Really enjoyed the questions regarding the nervous system. Would love to see more studies done on hollistic approaches involving HRV training, breathwork and neuroplasticity stuff.
I had ME DX and the PoTs and find it hard to separate the two. But perhaps my experience is helpful. Exercise was not not safe or do able for me with ME but once I actually had underlying/colying PoTs both recognised and treated (see below) I WAS and am able to exercise. But starting v slow recumbent, lying only. See the Pots UK Exercise video by Dr J Simmonds. Swimming rowing recumbent cycling. Now improved a fair bit and using HR monitor to stay below my threshold I avoid bad PEM. By treatment b4 exercise possible I mean (for me, may not be right for you) fluid salt loading, full leg abdo compression, multiple medications and using HR monitoring (Fitbit or Garmin).
Thanks, Gez! I'm so happy to see you interview Dr. Svetlana Blitshteyn! She is brilliant and one of the brightest lights I found early on with Long Covid thanks to Dr. Noah Greenspan at the Pulmonary Wellness Foundation. He's a colorful character I think you would have a great time talking to :D
According to the homestanding test, I have POTS and am showing signs of MCAS post covid. This is one of the best videos I have come across. Can't thank you enough for this!
POTS is a very very real condition and I’m so sorry that there are so many of you struggling with Drs with this. Unfortunately this is normal. To understand POTS, and to learn how to test yourself with what we call “the poor mans tilt table test”, I’d suggest joining POTS UK on Facebook. Something else I’d like to mention in regards to MCAS, is one of the mediators called tryptase that is released. We have learned this mediator is commonly known as the “meat tenderiser” of the connective tissues, resulting in over dilation of the blood vessels, blood pooling and yep, worse POTS symptoms. As a general rule I believe there are most likely more females than males that have POTS due to the connective tissues in females being less dense. It is also very well known amongst females with connective tissue disorders that progesterone, in the form of contraception, makes POTS unbelievably worse. With this in mind, I seriously wonder if females with long covid may also be affected by this to some extent. Hoping the best for you all. ❤️ (Ehlers Danlos, POTS, GP, MCAS gal)
@@faith_over_fear8896 Fist off, I’ve had POTS for over 30 yrs for a completely different reason to long covid, so a lot of what I do may be completely irrelevant to your situation. The Dr in the video here pretty much covers everything. I’m not sure if she mentioned Hyperadrenergic POTS (that’s POTS with high blood pressure as opposed to low), which is why it is important to firstly get a bp monitor. If the bp is low, then high fluid and salt is one of the first steps. Most tips include: Avoid sports drinks laced with sugar as the ‘crash’ that comes afterwards isn’t going to help. Avoid heat and standing in showers. Eat small regular meals, large meals results in blood rushing to the stomach for digestion making symptoms worse. I do have MCAS which no doubt doesn’t help, so I stick to a low histamine diet and use supplements etc that Dr Afrin suggests. I’d suggest learning as much as possible about POTs, dysautonomia & MCAS bc even after 30 yrs of educating myself, I can still watch a vid like this one and learn something new. Wishing you all the best.
Oh my goodness that explains why my prescribed progesterone cream cycle days are way more symptomatic. Thank you so much . Newly diagnosed with POTS 3 weeks after my second Pfizer. I had POTS as a teen after glandular fever. I recovered that time. This time I'm not so sure. It seems fairly unknown.
My second Pfizer dose caused POTS for me. I’m not an anti-vaxer, but I know it to be the case, as I was isolating due to a sick love one so I didn’t catch COVID, I know all my Long COVID symptoms are from the Pfizer dose.
@@markstaud I Was diagnosed with POTS in 2006. As a teen I had mono then a tough Labor with my daughter in 2003. Over the years have been able to be physically active. Got fully vaccinated/ Booster. Same shot as you. I started having frequent flare ups after. The end of Dec. 21 got a severe case of COVID-19 lasting a month and last I knew had scar tissue left at the bottom of my lungs. I am getting worse by the day whereas I am out of bed a few days then down again with what I describe as almost complete autonomic failure. My symptoms are migraines, vision problems, body temp regulation,brain fog, muscle, joint, nerve pain, fatigue, insomnia,tremors,digestive problems nausea and dizziness. Things went south very quick. I am going to my neurologist at Beth Israel Deaconess Center in Boston Mass. He is the Best on the East Coast. Good Luck.
This may be your best video yet. This doctor really understands the problem And has a real determination to treat it. Tons of good information here, thank you as always.
I can’t remember when I’ve ever felt so seen and so validated. Doctors too often hide behind the anxiety diagnosis because they don’t know what else to do. I really wish that this interview could have included the benefits of orthomolecular (vitamin) therapy. I’m finally reintroducing foods after 2.5 months of histamine intolerance after daily high doses of vitamin C, along with vitamins D and E, niacin, thiamin, zinc, lysine, quercetin, magnesium, omega-3, beef kidney, colostrum, a histamine friendly probiotic, and NAC. Also have had some occasional chiropractic adjustments to the cervical spine, massage therapy, and nightly Epsom salt foot soaks. My doctor’s only recommendation had been a beta blocker. I had to figure out that it was histamine intolerance myself and go on a low histamine diet. That, combined with the supplements, has done me a world of good. My energy is great, my sleep is great, and I finally feel like I’m getting back to “normal.”
I went through a similar journey, the beta blocker did not help me, but low histamine diet, no carbs, no gluten, no oxalates, various supplements similar to you and Daofoodplus before a meal is helping me recover. I eventually want to add more foods in. I sleep well, do floor exercises now and also use a rowing machine, started very slow and building those exercises slow. I get the occasional flare and its usually something I ate or overdoing it too much the day before thats the cause.
@@headfullofmusic422 it took 3 days for the effect of DAOfoodplus to kick in. And a few weeks to feel my energy level start going back up again. It was gradual, so much so I thought it wasn't working at first, but kept takng them as I'd bought them by then and thought what have I got to lose. Very glad I did. I still have to eat low histamine gluten free and no carbs as every time I try to switch it up. I react very badly. But if I stay on that diet I can feel that I am very very slowly getting better, with the occasional flare still. Just got to try stay stress free and not overdo exercises. But still increase exercising gradually.
In the USA health is an industry, instead of a service. My Houston's cardiologist told me: 'Do not do Covid research!' And I thought: 'If you were doing it, I wouldn't have to!!' It is so comforting to see her admiting we patients are getting more educated willing to understand what happens with us, without feeling offended. I wish I could afford a trip to UK and be her patient! I am a long hauler twice. First with covid, then with it's vaccine. Thank you so much for being here with this excellent work accesible for all of us!!
Some Doctors are very prideful and they do not read, they’re all say it’s psychological and lack of sleep instead of really taking the time to listen to their patients and actually studying what’s happening to their patients. It’s very sad here in the US that there’s not much help.
Exactly the same in india too , last year i had all the symptoms and my test came negative but now i ma long hauler, i went to numerous hospitals but all of them said i ma phycho, they are saying ur just searching up the symptoms and panicking, seeing in RUclips and panicking, even my family members told that i am gone psycho and they tried to keep me in jail with mad people, what kinda day is this, it was best to die with the active covid 19 infection last year than this kinda day would have never come
Thank you so much! This video made me cry, knowing that someone gets it and advocates for physiology v. Psychology. Every doctor I’ve talked to points to my negative test results and tells me all my sx must be due to anxiety or depression. Is anyone able to ask Dr S if heart rate variability is a reliable indicator of dysautonomia? My Apple Watch has noted my HRV has been chronically low with huge spikes of recovery during or immediately following intense and acute pain. There’s one NIH article noting low HRV indicates overactive sympathetic nervous system, but she didn’t mention this so I am curious. Thx for any info anyone has on this and thank you for these videos which give me such hope!
I’ve been suffering from severe constipation and motility disorders after COVID - and then SIBO, Candida, and then MCAS, and coccigodinia - have not been able to sit for two years now (which for an academic is all the more disabling). I could survive only thanks to my own research, which led me here, and a lot of prayer. I could also recommend micro current devices such as scenar, prolog, and ENART… Standard medicine was totally unhelpful - thank you for all your work 🙏
Our daughter had symptoms start at 13 and 3 years later (now 16) we find out she has NCS and POTS. It is extremely debilitating in her case. Multiple systems in her body are involved. We live in the DFW area and have to drive to Houston where there is the only pediatric dysautonomia specialist in TX. Currently she isn’t responding well to the recommendations and it has affected her life in a MAJOR way. She was gaslighted by the pediatric medical field for years! Our prayer is that she pulls through! Our fear is she is in Autonomic failure not just dysfunction.
Same they say I have anxiety , and I refused to take the medication they give me I know it’s not anxiety , THERES soemthing wrong with the nervous systems causing all these symptoms…
Sadly most doctors are only in it for the pay check and are not willing to do the extra work. It’s easier for them to just say it’s in our heads and just move on to their next patient. Only committed doctors are the ones doing research about it and listening to their patients. Those are the true heroes.
She is so right about doctors not caring enough to help diagnose this. It’s passing the buck and here is some anxiety meds. She is also right about how this is a complex syndrome and there is alot of angles to consider due to overlapping other issues.
Since fall 2020. I worked through the extreme pain and fatigue but it took a long time and started with 2 3 minutes of activity now can do a few hrs with breaks and less pain. This is such a valuable video. The more I understand the more I can deal with this. Thank you so much.
Excellent video and spot on content. I was looking for a comprehensive talk on this subject of long Covid. Your guest ticked off all the boxes to my questions. She is a Stellar physician. Clearly explains all the un answered questions. You fellas asked great questions with good imput. Thanks so much, truly appreciate your effort to bring this to the public.
Such a wise woman! I have learned a lot. Suffering from long covid for nearny 2 years. Being pushed by my GP to take antidepressants that made me much wors and lowered my blood preassure (80/50!). It was very informative video. Great work!
There needs to be Covid Long Haul Clinics in each state, the health departments in each state need to invest in this and put in as much effort as they do pushing the vaccine. This virus affects not only your body, but your livelihood, mental health, not to mention the isolation. So many people are trying to treat themselves, which shows lack of support by their doctors or health care providers, most of us probably go to walk in clinics and you would have to be referred to many doctors to sort this out. It needs a great team of doctors to be able to deal with all the symptoms as there are many. May we all feel well soon.
Triple comment - Gut Issues (needing enzymes in order to digest, loose stool, not sure what I can eat - background of mostly veg all organic non processed . . . but digestion is poor)
I've had horrific gut issues with the dysautonomia and POTS. The gastroenterologist was not helpful, actually hurtful, prescribing PPIs that caused SIBO (Small Intestinal Bacterial Overgrowth). The symptoms always seemed to be those of gastroparesis, but he wouldn't do a food transit time test. I was able to get my GP to try Xifaxan in case I did have SIBO, and sure enough, it cured that. But I still have slow gut transit time. All that on top of most of the other POTS symptoms. All I want to do is lie in bed, but won't let myself do it, as hard as it is. I'm very slowly improving, forcing myself to go to yoga class five days a week even though I feel like I am going to fall over, and exercise intolerance causes me to be wiped out for the rest of the day.
Another excellent video in this series. Really interesting insights into POTS from Svetlana. And yes, the havoc caused by the Covid pandemic is well and truly compounded by the intellectual laziness of much of the medical profession.
If 15% of people are making a full recovery from lond covid, that's a marked improvement over recovery rates from ME, so maybe our health systems are learning! Either way, it may sound terrible for everyone else to see such poor outcomes, but for those of us who've been stuck in limbo for years this is good news.
God Bless you Dr. Blitshtoyn. Wish I could take you to my Drs with me. I have two Drs (Cardio & GI) who each have a small piece of the puzzle. But easily back off. I need ONE to carry it through to healing me. See them each one time in 3 months just doesn’t work! Thank you. Justine in Connecticut USA
I'm very happy and encouraged to see a double blind placebo trial end, and the results are very encouraging! A larger trial will follow soon which will help optimize the dosages. I'm very pleased !
Some feel 70 percent improvement . Some feel improvement with most symptoms . What is Interesting is the improvement over months just keeps getting better. I Saw participants who could not make a meal even due to being so fragile do things again and be out and about , and some return to work made me very excited! Only if the larger trial starts next months hopefully there is a chance by next summer it could be approved for long covid since long covid is like the invisible pandemic affecting hundred of millions likely . I have been looking for treatments since March 2020 and used my connections to see anything that may help and share with the community. I appreciate your work very much as you are the voice of many .
You are truly inspiring and have helped me handle my Long Covid symptoms for the last 6 months. Mine seemed very much like POTS and my hr has now gone back to normal a month ago. You have helped me and others BIG TIME!
@@phantomtr1 I really dont know. I did everything though...diet (organic) with way more veggies. Vitamins that help mitochondrial function. Being on a schedule for sleeping & eating to match circadian rhythm. These all helped my energy levels and other symptoms but not much my heart palpitations. I got IV at the ER one day and they told me all my results looked good and then from there my HR which was stuck in the 90's dropped to 65bpm. Then slowly for a couple months my hr with exercise dropped to normal levels to. I'm still kinda off with dizziness and weird symptoms but nothing like before.
Douglas you are the only person that I have heard recovered from post covid pots!!!! How are you now and out of curiosity which i IV did you get and do you have any ideas what turned you around?
It’s been 6 months since I have had Covid and all my tests came back normal , but I still have shortness of breathe while doing minimal exercise, heart starts racing like crazy during exercise, panic attacks , , some chest and back pain , feeling of rocking back and forth when I am standing still or sitting down , and mental concentration fatigue , . Currently I am adding minor strength training 4 days a week and trying to walk at least 9,000 -10,000 stepsa day , although I am way better than I was 6 months ago I still am not close to where I was pre Covid …I’m a 34 year old male
Be careful with that step count - I would take a few days of lower activity levels and see if it helps. You may be pushing it too hard for where you are in your recovery
@@RUNDMC1 thank you , I am finally going to go to a POST Covid clinic here in the USA and hoping they can help me out . It’s especially made for long haulers
@@patriciabryant8892 no I was never diagnosed with it , the doctors just said things will get better , the doctors really can’t help me anymore , what can they do ? How long will it take for me to feel like I am back to normal . Will I be able to exercise or have the stamina did I have before ? I am only 35 years old . It is very disheartening..
@@glisciousful It's really awful & I have the same fears but........do be careful - I'm with Gez - slowly but surely & don't push yourself as you don't want to crash again -
Thank you for validating my concerns, 12 months after COVID infection I still have no medical professional in my corner who seems to NOT think its all in my head. I can't work and do the other ADL that I used to, am quite sure that I would fail the poor man's tilt test yet its never been suggested to me by a doctor😢
I thought this was an excellent video, - and she kindly highlights neuropathy. Neuropathic pain is my worst symptom by far, and seems to be under-reported.
I'm from Scotland, I've had ME for 28 years and had Covid very mild during the first wave before testing; long story short 3.5 years later, thanks to people like you and RUclips I've proven that I have Orthostatic Hypotension and POTS like symptoms - my doctor waved my evidence away saying it proves I have anxiety despite my BP dropping by well over 20 - at times even 30, my pulse pressure being as low as 12 and my HR 118 trying to compensate, I'm told my bloods are perfect, BP sitting is amazing 115/75 and HR is 65 while I'm sitting so why am I testing myself, I clearly have mental health issues 😮. Come on UK, why are patients eager to learn more about this than doctors?
Propranolol has been invaluable to me for managing my POTS, exercise intolerance, and fatigue - I definitely fit in the dysautonomia side of the LC spectrum tho
I asked my doc for Propranolol but they are not prescribing it because I have a history of childhood asthma (even though I am in my late 30s now). I think it may help my POTs like symptoms but I also need it for severe situational anxiety which has devastated my work life in particular. Not quite sure what to do.
@@tonyg4058 Propranolol helps my POTS tremendously, and well as extra salt and about three liters of water a day to keep my blood volume up so the heart doesn't have to work so hard. That asthma thing sure does sound lame. I used to have asthma too, and can't imagine how propranolol could bring it back. It certainly has not.
@@paulah.9415 I managed to get Propranolol in the end. Gave me devastating depression. Had to come off it, no way I could carry on with it. Glad that it's helped your POTS.
I sent this to my GP bc I was her first POTS patient. Thank this was amazing. I have POTS for the past 7 years. It took me 5 years to get a proper diagnosis. I knew if I got Covid I would be dealing with all this.
I have a grand daughter who has suffered her whole life. Spent hours, time and money doctor after doctor and she has all of these symptoms but no doctors has helped. They don’t know what they always say they can find nothing. It’s heartbreaking watching her lay in her bedroom alone, depressed and feeling hopeless. I need a good doctor for her. Breaks my heart. It makes the whole family feel hopeless.
Hi Gez, keep up the great work. I have also been told by doctors that my HR abnormalities were due to anxiety due to ecg’s /heart scans/X-rays/blood work/ being all clear. Very interesting that pots has some form of medication to help. The biggest thing for me is the sleep degradation After a week of work and being in such a fight or flight state that I struggle to sleep. I’ve also noticed I feel worse with certain pasta so avoiding gluten makes sense. Have you heard of medical median? Talks about using celery juice to help clear the body. Worth a try. Michael
HI Michael, been sick since 3/2020, last year consuming low amount of celery juice ( 2 ribs) helped. I also gargled with it, maybe cleaning the tonsils helps??
Thank you for such an educational video. I’m dealing with post vaccine POTS and I’m still waiting for my tests for a diagnosis but I’m so incredibly sick and it’s been 6 months. I pray we start studying both because I’m convinced that Long Covid and adverse reactions are very similar. I have excruciating pain, neuropathy, neurological symptoms and Mono just like Long Covid as well as obvious to me Mass Cell or something else that has activated my autoimmune response and it won’t turn back off. I pray we are studied asap because getting treatment or even a diagnosis has been impossible in the last 6 months. I had to explain to my neurologist that I wasn’t too young to have POTS (I’m 41) and that Mono was absolutely happening Post Covid or post vaccine. She didn’t believe me until her med student googled it. We need help ASAP! Thank you
@@markstaud I’m so sorry 😢 since I commented I was diagnosed with Dysautonomia:parasympathetic withdrawal and sympathetic withdrawal, small fiber neuropathy and MCAS. After a few months of IVERMECTIN and medication for the dysautonomia I’m doing so much better! If you are still suffering find a good Cardiologist who can help diagnose your dysautonomia with a tilt table test or a standing EKG test. They have excellent medications for it like Midodrine and Fludrocortisone. It was also my 2nd Pfizer vaccine.
I developed and recovered from dysautonomia after COVID when I found out the cause (the medical profession is clueless). My dysautonomia turned out to be caused by wireless electronics, also known as electromagnetic hypersensitivity. When I eliminated all wireless devices from my immediate environment. I recovered fully. No cell phone, no wifi, no laptops, no apple watches, no I pad, no smart utility meters, etc. These devices all run on high frequency electricity that travels at the speed of light through the air we breath. These high frequency electromagnetic fields are what transfers data between wireless devices. Unfortunately, EMF's can also disrupt the autonomic nervous system. I am a retired physician, previously a board certified general surgeon. I doubt my profession will ever figure this out. I have tried to tell them.
May I ask you for your symptoms please? I’ve been having shortness of breath more than a year now but my lungs and heart are ok. Do you also have shortness of breath?
@@Hudson.. nausea, dizziness, feeling off balance, tachycardia, pressure inside my head and behind my eyes, ears ringing, brain fog, not being able to focus or think or follow a conversation, chest pain, shortness of breath, headache, blurred vision, near fainting, and the list goes on...
Thank you so much @savedbygrace338! It’s been quite stressful the symtomps! I will try to reduce as much as possible the time using these devices! Beside that do you have any advices? Thank you so much once again!
I have a hunch that POTS is not the most common but rather just the most commonly observed and acknowledged and recorded version because of the simple test. Doctors like something that fits into a nice clean box where they can just run a standardized test and it spits out a yes or no. I would even suspect that POTS itself (if it can be distinguished fully from other possibly related ailments) is often not even the biggest problem in those experiencing POTS; as it seems they/we all have other undiagnosed issues also
Agreed! I feel better standing than lying down; can't sleep at all despite zero anxiety, etc. POTS doesn't really describe my symptoms but autonomic dysfunction must be the case if I can't sleep even when I'm actually tired.
@@lukaskidd4621 Yeah, luckily we have the POTS test at least for those of us that need a diagnosis for one reason or another. The medical community's misunderstanding of this condition is quite sad, we are still so primitive in our medicine. We have some brain scans of long covid patients showing gray matter loss - validating our neurological issues as something other than psychosomatic, but we are truly at a pathetic time for brain medicine - they don't even know what gray matter does. They're just grasping for clues at the few parts they can produce an image or scan on without any deep understanding. Future humans will look back at this period of medicine with the same pity and disdain we look at doctors using leaches and proclaiming yellow bile levels are too high lol. We're not far off that. I just wish doctors would have the perspective to realize where we are rather than the arrogance to assume we're in an excellent age of medicine and understanding now.
Amazing advice Dr Svetlana Blitshteyn am watching in the background whilst busy bit will watch again tonight later on whilst relaxing Think I have long COVID….. Checking with drs atm
Something strange... I had all those symptoms chronically and severely precovid. I could barely stand, 10 minutes. Fell asleep everywhere. Heart would suddenly race. Over 150s at times! Scary. Then after 3 weeks fighting serious covid infection, and a month more, I feel better than precovid!! I used supplements which I continue in much lower doses. Temp in covid was 103.8 for about 4 days. Mostly water diet bc I could not stand up to get food, but was hungry. Not sure what changed, but I fell better than full year precovid. Theres hope! 🙂
I’ve never had a positive TT test or stand test, I was however diagnosed with inappropriate tachycardia. It’s very upsetting, I can ride a recumbent bike for an hour yet bending over or doing anything that involves stooping/bending over or crouching wipes me out. Just cleaning the house or picking something off the floor and I have to lie down. I pace myself by resting on my back. I wish there were a name for this. The heat really wipes me out, I’m not long haul, but I’ve been watching your channel be yo have MCAS/ME/CFS post viral issues after EBV.
Gee, it does seem as if you've been suffering 'long haul' - from ebv, no? Like me you are leaving no stone unturned (myself with an autoimmune condition that overlaps w/the overactive sympathetic and various neuro issues which are increasing)
Anyone else with an overactive parasympathetic nervous system also? I would love to hear this side acknowledged and spoken about too. Some call it Complex Dysautonomia. This video is fabulous, and Dr Svetlana mentioned of course that the parasympathetic can also be dysfunctional as in underactive, but in some it is overactive. I have POTS/OI but when I get a big parasympathetic slump, sometimes my heart rate doesn't rise at all when I stand up and it's too slow.
It is not under active..it is being suppressed by the sympathetic system..fight flight system is more dominant for obvious survival purposes… stimulate your vagus nerve
@@jaydonnelly3224 thanks for replying but I think you misread my comment, I said an over-active parasympathetic, not underactive. It's also called high vagal tone.
I have POTS and i have noticed that when my HR DOESNT jump 30+ upon standing and maybe only raises 10, i am more symptomatic generally. Thanks for the comment, i may look into complex dysautonomia
@@connormahan1907 Yes exactly. I experience the very same thing. The Dr whose videos informed me about Complex Dysautonomia is Dr Artour Rakhimov. He has an easy '6 minute standing to lying down' HR test to assess it. And he advocates Buteyko breathing techniques for treatment. I haven't tried that yet though.
Thank you to Gez and Asad and neurologist. Very interesting and helpful 🙏 That explains why I had a bad reaction/ intolerance to Bisoprolol. Perhaps too high a dose!
I have hyperpots from covid. I cant even take a claritin or an antibiotic without my heart skyrocketing. Yes, I'm better than I was a year ago, but still no where near where I need to be. I research... research... research... and have to educate doctors what is going on. I keep gluten out of my diet and eat more fruits and oats and feel better for changing my diet.
My God I loved this video she summated my whole experience with the UK Medical sector - tests are fine A +B = C Socratean logic = Doctor says I’m absolutely fine
I am a taichi and Qigong praticitioner and I know that those are ancient internal martial arts that empower autonomic system and decrease sympatatetic system, the is for taichii you must use a stand position but for Qigong you can do it seated on a chair specially zhineng Qigong.Maybe it will be a good option.
Also I was diagnosed with dysautonomia in 1990 with tilt table test. My dysautonomia improved when I started taking thyroid hormone when a test said my TSH was high
@@angelagarner1904 awesome that's good to here , I have an auto immune marker showing up for hashimotos and anxiety is front of the list for this issue so I hope I get resolution to this as well 🙏 ty
@@champ92868 I hope it helps you! Make sure you test free T4 and freeT3 also and make sure numbers are at least halfway in the range that is given you can order at home tests I get mine through everlywell but they have been a bit slow lately, best of luck!
Having cfs for yrs unable to relax most of the time I know my sympathetic system was on high alert 24 7. I found thc and it puts me in a deep relaxed state so well ..it allows me to recover more during the night.
@@RUNDMC1 I’m doing well thanks!! Still incredibly frustrated by the lack of running, it’s mainly just my lungs/breathing still being laboured, but It’s not an issue when running super slow- so I’ve been building up plod miles for a while haha! Seems anything moderate or intense sends me into a relapse of more symptoms still though. Interestingly I’m able to do strength work (including high loads) with no issues How’s things with you mate? 🤗
@@RUNDMC1 Great to hear that you’re feeling a-bit better! Re PEN, not since I’ve been doing lighter paces, I’ve tended to mix most of the runs up with hiking (In the Peak District) to be honest, so it’s more run/walk (keeping the HR low), but it’s made such a difference. Once the heart rate is high the I struggle with PEM though. Found it crazy how fast symptoms cascade when fractionally above tolerance so just been weary of that,
It's one positive outcome that's arisen after this terrible illness , learning how to regulate your own autonomic nervous system and strengthen the immune system by trying to stay calm . I'd be interested to hear of any recommendations re breathe work . I do Win Hoff techniques every night and most mornings and the 478 breathing . I'm trying to be mindful about breathing in through the nose too. I had to gain control back as I was definitely in fight or flight mode for months due to the severity of the ongoing symptoms.
I am so grateful for this. I’m about to undergo a lumbar puncture to discover the source of my new seizures which seem to be associated with long Lyme and long COVID’s chain of events and no one has ever done a PoTS test on me. I recently was in the hospital and asked if they would take my blood pressure standing up because I got so dizzy and the nurse said she wasn’t allowed to. I’ve done this PoTS test twice myself now and it’s clear I have that syndrome. That may lead to some much more clarity and I’m so grateful. I’ll be seeking out the NIH study and looking into Serum Immunoglobulin. I have had good improvement with Hydroxychloroquine and an alkaline diet including Burdock root (I’ve been gluten and dairy free for 30 years) and jivamukti yoga modified to 20-45 minutes and walking 20-30 minutes. With two days of rest per week. Best of luck!
Thank you Gez, you are incredibly knowledgeable, every time you name symptoms, a light bulb goes off, like your analogy of the jellied spine weakness, I have it.. any chance of putting together a massive hybrid Visio flowchart the would reflect the knowlege gained from all there videos.
Thanks for the video as per Gez! Though a little frightening to hear only 15% recover, the thought of never being able to exercise again is a pretty grim prospect😞 What’s your thoughts on if we tackle the viral debris, then the dysautonomia part might work itself out, as the ‘trigger’ per day has been removed?
I think that’s a good shot - the alternative is training the body to not respond to the viral trigger. Although the methods of doing that are less conventional!
@@RUNDMC1 very true! I must say, with a bit of a mindset shift and almost ‘telling’ myself that nothing is wrong when I feel symtpoms coming on after exercise etc. I have certainly felt they grip me less. Ability to do this is also trained by things like meditation, breathing etc. Definitely think there’s contributing factors from both sides, also would be interested to see why viruses I know I had (EB) lay dormant and un triggered and what differentiates them to covid, or if maybe Covid triggered them too! Sorry for the brain dump, it’s nice to have somewhere to bounce these ideas around😂
@@harryboby7563 Hey Harry, I agree with this. Find doing activity then having a small break and breathing really helps. Maybe a bit impractical but allows me to at least do some normal things.
@@harryboby7563they can be reactivated. My teen daighter with long.c was found by big immune blood test done ny her nutritionist to have reactivated chickenpox and human parvovirus. Now treatrd with microimmunotherapy for general immune response, mitochondria probs and the reactivated vira one at a time, over some months
I am 75 years old, fully vaccinated and have had long Covid for 12 weeks. It presented just 7 days after I had a very mild case of Covid. I am now completely disabled due to long Covid. So I don’t fit any criteria for long Covid, but here I am.
I've lived what I think is POTS for over 50 years. When I first brought this to a doctor's attention when I was 14, he suspect Addison's and predicted I'd end up with Addison's. I don't know if POTS was known back then, but no one picked up on it and he was the only one who took me seriously. Eventually it was debilitating and even my pillow was too much of an incline. I'd pass out if I tried to cross a room. I never got a diagnosis because at the time, the standard was a tilt table test and the only one available was about 5 hours away and I was too sick to travel (couldn't sit up in the car) and I was already disabled with ME/CFS. I'd added salt to my water, but apparently it wasn't enough. It wasn't until I added 3/4 tsp of salt to 55 ounces of water (any more salt than that and I retain too much water in my hands and ankles) and continued to salt my food (whether I care for it or not), and then, I went gluten free did I experience much relief. I still get the symptoms; I can't stand long due to the ME/CFS anyway. I do better when walking if I have the energy, but standing for any length of time is still difficult and will really do me in. I do breathwork and meditate... as much because I have time on my hands and because it's stressful being disabled. One of my problems is low heart rate (it's always been low and I have at least 3 genes for this) - bradycardia - , and most doctors don't understand that a 30 beat increase can be indicative of POTs. (Besides most see the low heart rate and take it as a sign that I'm super healthy.) Most look at a range of numbers based on women's average heart rate. Well mine is in the mid 40s to 50s. This generally means for me that a heart rate over 80 some when upright begins to get too much. When my heart rate exceeds about 84 beats when I'm moving around it's a sign I'm doing too much with my ME/CFS (that is, if I'm trying not to be anaerobic and stay within my energy envelope). I shouldn't have to train doctors on POTS and people with low heart rates as their norm. This information is easily found on the Internet. Another is that I finally moved to an area where there was a tilt table. It was offered to me and I was told I'd need to stop taking the salt to do the test and get the diagnosis. Well, if I don't get enough salt I have horrible low blood volume cramping at the tops of my feet as well as debilitating symptoms. The idea of going off the salt bring tears to my eyes. I can't tolerate the cramping - I'd need to arrange someone to take me to the appointment and manage a wheelchair (because I couldn't remain upright). If I even fail to get all of the salt I need each day the cramping will start. I don't understand why these symptoms and how I manage them can't be enough to get an official diagnosis.
Maybe this helps??? Doesn't hurt to ask them - ruclips.net/video/JwjJs5ZHKJI/видео.html Maybe Hawthorn Berry and Ajuna Bark powders for heart palpitations? Other MCAS info - ruclips.net/video/sICD0Kn6pR4/видео.html
Plummeting salt levels are dangerous. This can cause seizures or death. I know because I have hyponatremia (low blood sodium) along with the POTS, and was needing 4 teaspoons of salt per day, taken all throughout the day, to keep my blood pressure at a normal level. My doctor prescribed fludrocortisone at 0.1 mg each morning. It corrected the problem, and I no longer have to take my blood pressure every hour. I didn't have hyponatremia before my first case of covid, March 2020, so I don't know if that could have caused it. The POTS didn't start until I was reinfected with Omicron. I will see an endocrinologist next month and perhaps learn more. Currently my GP has been treating me. So far other specialists have been useless, other than the cardiologist who diagnosed me with post-Omicron POTS.
In Canada my GP's eyes glaze over with any of this... there are no tests for small fibre.. , MCAS, or any blood makeup specifics outside of the standard tests.
There is a test for small fiber neuropathy. A neurologist can perform it. It’s called a skin punch biopsy. It will confirm if you have SFN, though I’m not sure how reliable the tests are, rate of false negatives, etc.
Thanks Gez. After 6 month of covid, my anxiety has really increased. I've tried sertraline, losartran, lexapro, amitriptyline and busbar. They all made my anxiety extremely worse. Lorazepam is the only thing that helps but it is not a long term drug. Hopefully there is something that works. My body seems very sensitive to any stimulus since covid. Any suggestions. Thanks
My body hates all meds now too but especially most ssri..i have had horrible anxiety since covid including ptsd and depression ..mirtazapine has allowed me a mostly normal mental state with flare ups occasionally but the mirtazapine is easy for me personally to tolerate when i started and helped within a month and has continued to help after a year.
Breathwork is important..but you really have to dig deep..try buteyko or wim hof. You need to rehabilitate your breathing patterns. Also reduce inflammation with pynagenonal, black seed oil, but c etc etc.
I wish I could talk to these three experts and my doctor on a zoom call because I’m so confused and worried the specifics of what I have and would pay a fortune for it :(
My father kept being told he was an alcoholic cus he got such severe shakes after covud infection a month later, he kept losing his balance and said it passes after a couple minutes but fell (pushed over feeling) finally got meds to treat it! He was very active before hand
Whoa! This is the first time I heard the term post-bacterial. I've struggled most of my life with fatigue, intermittent fainting as a child, bradycardia as an adult finally treated w/a pacemaker when I was 54. My symptoms became much worse after pacemaker surgery and I blamed the pacemaker or the surgery, for a long time. Drs said that surgery was too minor to trigger anything, and I'm not aware of having had a virus. But I did have scarlet fever as a child and wonder of that might be responsible and the pacemaker surgery, though minor, was just too much.
Cardio MRI, yes yes yes and more yes. This could be the key to unlocking the puzzle. My doctor said it is a expensive test but I was in the MRI scanner for a back problem whilst exhibiting Long Covid symtoms and experiencing heart discomfort and shortness of breath, fatigue, tinnitus, pins and needles and more. The outcome was the discovery of a torn disk in my lower spine and compressed nerves. I am suprised that while I was in the scanner, a heart scan was not conducted also. I was scanned for a duration of 25 minutes. I did have the Echocardiogram test but it was normal, although the cardiologist kept telling me to breathe during the 20 minute test , I was underbreathing. I have had these symtoms for many years now and pre Covid infection, no vaccinations. My symtoms worsened after a second Covid infection which was a lot more severe than the first . Drinking carbonated water regularly and gentle cycle rides in the fresh air. The more active I am , the less I notice the symtoms but walking up stairs really exacerbates the shortness of breath. My sinuses have been congested for years since Non Specific Urethritis diagnosed in 1995. Never recovered from. Thank you for your valuable insight and patient empathy. Best wishes.
What a great video. I don’t know where to start though. I can’t even imagine trying to explain this to my GP. Who should I see? I am 4 months post covid. I am having a lot of issue with my heart rate and breathing
Drs are merely low ranking employees in a large corporation regulated not to think but to adhere to a standard plan that optimizes profit. At least in the US.
My son has been suffering 2 years now and what he doesnt understand is that while he suffers this disorders, me as a mother is completely depressed not being able to help him not able to do anything
![Stromae, Pomme - “Ma Meilleure Ennemie” (from Arcane Season 2) [Official Visualizer]](http://i.ytimg.com/vi/1F3OGIFnW1k/mqdefault.jpg)
The first time I finally found a doctor who listened to my symptoms and didn't try to gaslight me, I broke down in tears. This has been a terrible experience. We don't need our GP's to have all the answers. We just need them in our corner. We need them to listen to us and to try to educate themselves on long covid. They can say, "I don't know how to help you." They just need to try and not let us feel abanded by the entire medical profession we have access to, which is very little when they are not open to not having all the answers.
:O
This has been the experience of so many people with CFSME. I worked in services as an occupational therapist and heard hundreds of stories of the long frustrating journey to get a proposed diagnosis by a GP or specialist Consultant and get referred to our service for confirmation of diagnosis and therapy.
@@saneben9917 THIS IS PERFECT!
@@saneben9917 Thank you!
@@saneben9917 nicely done. Thank you 🙏
" you only need one doctor to care" . How very true that statement is . My GP admitted that he didn't know what to do re my post covid symptoms but he acknowledged my brain fog , dizziness and fatigue and instigated a long covid assessment and MRI . I sat in his office in tears explaining that this disease had floored me and that this illness isn't psychosomatic when prior to covid I worked full time and was a busy mum of two .
Thankyou for this great video .
I keep getting told its anxiety 😭
@@faith_over_fear8896 that so unfair isn't it . Have you tried seeing somebody different ?
@@EllaSloman yes I've seen about 4 different doctors. Some are sympathetic then others. I've been told I'm chasing after a unicorn. They dont have a solution of answer for me cause tests are showing "normal". I'm just relying on jesus and having faith during my recovery
I can certainly sympathize with your case. It's all over my medical records "extremely anxious over covid diagnosis "... My doctor retired. It makes me very upset. I have been struggling to breath intermittently since May 2020. It's aweful
I’ve suspected I’ve had POTs for a few years (I have EDS) but COVID has made it so much worse. I wouldn’t wish this on anyone.
I had long hauler after having severe covid symptoms for 40 days and couldn't breathe properly for 14 months.My nervous system was messed up for many, many months.I had brain fog, sharp pains, cognitive issues, memory issues, crazy high blood pressure, off and on...Everything got much better with time and 14 months later,one day, I woke up, and I could breathe! Have heart that it may just take time for long haulers symptoms to go away.
Thank you for encouragement. It made us all have hope. did you take any treatment/supplement. share if you do.
Thank you for sharing. I'm having really bad postural tachycardia and I'm starting to become depressed and feeling like my life will never be how I wanted it to. Only 27, feels so unfair but I'm trying my best to stay optimistic
Problem is if you get anouther cold or any infection it rears its ugly head again and you go back to square one,that's what's been happening to me,started 2006.
So ur back to normal??
@@tjsshooting1926 how are you now?
If POTS had been taken a bit more seriously before Covid, we most probably wouldn't be in such a bad situation. Feels like my doctors are running around like headless chickens trying to work out what to do about it. Most long haulers i speak to have this now.
Hello Sami. Exactly. I share your frustration. The only thing we can do is learn everything we can and treat ourselves accordingly. I don't look to the average medical practitioner for validation nor support. Most are useless parasites. How many longhaulers can afford to see these rare specialists like this brilliant physician, or even have access to them? I don't need to be gaslighted by uninformed nuts.
@@barbarawarren9443 You are sadly correct... They often come from afar to live on local populations they have no affinity to - just see them as a means on the the way to filling their international bank account...
@@barbarawarren9443 keep pushing, I had to ask for a new Dr. & he just validated my symptoms, apologized for the "idiotic healthcare system" AND wrote a referral for me for a post-covid clinic, as well as updating my chart! FINALLY!
@@barbarateresarhiannonsreal1756 I'm so glad for you, Barbara Teresa. 😀
@@barbarateresarhiannonsreal1756 what did the post-Covid clinic do for you?
Wish we could make this compulsory viewing for British medics. Such an impressive speaker. Thanks to all concerned.
American doctors need to see this as well. This was so informative.
Wow, knowing that only 15% of people are getting back to normal is a little terrifying. I've been getting back to running for the first time in ~1 year without my inhaler and am noticing some interesting heart rate behavior. My heart rate will spike at the beginning (doing the lightest of jogs) and actually go down as time passes while keeping at the same pace. I found myself able to do an all out sprint towards the end because, as I've been telling myself, my body has readjusted to realizing I'm not being attacked by a bear. Very weird stuff.
@Sante Fe At Bay how are you now?
Wow- I’ve noticed similar patterns too! It’s so strange! Glad I’m not the only one!
Exactly my heart rate will race up sometimes and I have to slow down
I discovered that I have POTS right after Omicron, because I had been wearing a Fitbit for awhile, but suddenly my heart rate would jump into the cardio range just going to the bathroom during the night. I started racking up an hour of cardio range heart beats every day, despite being mostly in bed due to fatigue and dizziness. My cardiologist diagnosed the POTS, but gave me no help other than to tell me to keep doing the yoga classes that I had been doing. Good advice, but I feel like I am going to fall over in the standing condition, and am completely wiped out for the rest of the day after doing it. Looking for help, but we don't have a long covid clinic in my city.
My theory is that it's vagus nerve inflammation, sending the body into fight or flight mode. I noticed that if I take a little electrolyte things calm down. Like my electrical signalling system has become stuck or dysfunctional
As ever, a wonderful and informative video. I have dysautonomia, there is no doubt about it. I am also a clinical psychologist and have been working for years with referrals from people who have suffered from chronic fatigue. The doctor has given a 'diagnosis of depression. Ironically, as a clinical psychologist, I never start with the psychological before I am convinced there is no underlying physical condition. I have often sent people back to their doctors where they have had further tests done. It has almost resulted in serious diseases being missed, including cancer and pernicious anemia. Depression is a symptom, not a disease.
Wow, Wendy, I am going to try to find you . . . what state/country are you in? I am regularly handed anxiety referrals, when I have auto immune inflammatory issues of all kinds. Do you video conference? I am happy to 'apply' - I'd be thrilled.
@@eugeniebreida1583 I live in South Africa. I qualified as a registered nurse before I went back to study Psychology. My own journey started with Chronic Fatigue at a very young age after suffering from Glandular Fever. I remember the humiliation of being told that it was all in my head. It made me very aware of the need to listen.
@@wendyhay1302 Thank you for following the professional path you have- we need so very many more like you. I am sorry to hear you are now? suffering dysautonomia, . . . as a result of Covid.
Depression is the only suggestion for what is wrong with me that I have ever gotten from a doctor, no matter what my symptoms are, no matter how many different doctors I tell. I had mono sixteen years ago, and chronic fatigue best describes what I was left with, not that a doctor would say so. I also started experiencing whole body pain on and off, and over the course of two years it became more and more frequent until it was an every day thing. I haven't had a day without pain for 14 years.
The chronic fatigue and pain are the two things that always stick around, but I have had all kinds of other issues, major crises of health that always get ignored. Severe gastrointestinal issues coupled with weight gain while I was only eating around 700 - 900 calories a day. My doctor did not believe that at all. He told me to eat less, exercise more, and quit complaining. Then he offered me antidepressants. It took me years to mostly solve my stomach issues and stabilize my weight so at least I was not gaining, but I find it quite literally impossible to lose weight. What else? When my VERY heavy periods practically turned into hemorrhaging, I was told by my gynecologist to take advil, and maybe consider getting treated for depression. That was it. The last time I even tried to go to a doctor and lay out all my symptoms she didn't say anything to me at, she just gave me a dirty look and walked out. After a few minutes a nurse came in to escort me to the front desk to pay my bill. Four years ago I had a period where I was experiencing shortness of breath, not too bad at first but it slowly got worse until I woke up one night really feeling like I couldn't breath. When my lips turned blue my husband begged me to go to the doctor, but I sent him out to Walmart to buy a can of air, a can of oxygen that they sell to the tourists where I live because the altitude around here can cause altitude sickness. I have left out a lot of the details about what I have gone through with doctors because writing it out would fill a book, but this craziness with the can of air was due to me not trusting that they would do anything for me at the hospital, except maybe give me oxygen. No matter what happens to me doctors claim there is nothing wrong with me and I should look into getting treated for depression anxiety. I didn't see the point in wracking up a huge emergency room bill for a little oxygen with a side of disbelief and condescension when I could get a can of oxygen from Walmart for $15.
If there is a God I hope you are repaid for being such a good and caring person and not just collecting your check. Thank you on behalf of those you have cared for and really helped.
One good thing, one bad thing. I finally got a neurologist to diagnose me as POTS/dysautonomia. Bad thing. He said "There's nothing I can do for you." Still, not knowing was worse.
I put my post covid pots symptoms in remission by doing cold showers for 6 weeks. A doctor I work with says this has seen the best treatment she had seen for those healthy enough to do cold showers. She also recommended weight training once substantial improvements were seen.
What is the theory behind the cold showers? Retrigger an abnormal immune response to perhaps reverse the initial one?
I agree, i started cold plunging and have seen huge improvement. I wouldnt say I'm cured, and some days I have bad days. But cold plunging has helped me tremendously with Anxiety and with some other symptoms. By it improving my anxiety it has overalled improved my health. mental health and the other physical symptoms are somehow connected. So less anxiety will improve but not cure you.
I had pots before covid I put it in remission doing this as well in 2019. I have it again after covid, and itz worse than last time, but getting better also taking alot longer. I stopped working out for 2 months in 2019 and just distressed. I wasn't even able to workout at that point without feeling short of breath.
I took cbd, did hot baths and cold showers with sauna as well. Smoked a little weed too, I just completely destressed myself as much as possible.
Anything you did particular that thinks made a difference? Timing of the shower?
@Lukas Kidd I believe it has to do with forcing your vagal nerve to connect with your autonomic nervous system due to the cold shock. There is damage in nerves from covid and it forces a reconnection and healing and some say a boost of serotonin which also gets depleted from covid. Studies have been showing ssri depression meds can help with covid due to keeping serotonin in the synapses of nerve cells.
@@jarrodmurphy9783 Do you think it's safe to try cold showers for Hyperadrenergic POTS/possibly a higher degree of parasympathetic dysfunction?
I feel like if your nervous system is overactive, the best thing you can do is try to achieve a rested state; and cold showers are unfortunately like a short, but incredibly intense, exercise, only cold showers would certainly trigger a massive adrenaline rush.
That doesn't seem safe to me specifically for those of us who are hyperadrenergic, even though I'd be willing to try anything if my location was warmer.
I got POTS from covid. I'm holding back tears for the people who had this for many years.
I was told I have anxiety and panic disorder. I needed to speak to a psychiatrist... They tried to give me meds. Thankfully I listened to my gut and didn't take it. I was "normal" before this happened. Not was going on to bring me anxiety. They never listened to me. I had to leave the state just to find a Dr. That would.
I wish everyone comfort.
My biggest concern is if we have both CFS/ME along with POTS as the exercise won't help and we'll just be stuck in a loop. Really enjoyed the questions regarding the nervous system. Would love to see more studies done on hollistic approaches involving HRV training, breathwork and neuroplasticity stuff.
I'd second that ... Holistic approach is always great
This is where I’m coming out on the subject too
I’d also love to hear about HRV training
I had ME DX and the PoTs and find it hard to separate the two. But perhaps my experience is helpful. Exercise was not not safe or do able for me with ME but once I actually had underlying/colying PoTs both recognised and treated (see below) I WAS and am able to exercise. But starting v slow recumbent, lying only. See the Pots UK Exercise video by Dr J Simmonds. Swimming rowing recumbent cycling. Now improved a fair bit and using HR monitor to stay below my threshold I avoid bad PEM.
By treatment b4 exercise possible I mean (for me, may not be right for you) fluid salt loading, full leg abdo compression, multiple medications and using HR monitoring (Fitbit or Garmin).
We CSF/ME people don't seem to be able to convince theorists that EXERCISE DOES NOT HELP. How long will this keep going on?
Thanks, Gez! I'm so happy to see you interview Dr. Svetlana Blitshteyn! She is brilliant and one of the brightest lights I found early on with Long Covid thanks to Dr. Noah Greenspan at the Pulmonary Wellness Foundation. He's a colorful character I think you would have a great time talking to :D
Cheers Scott!
According to the homestanding test, I have POTS and am showing signs of MCAS post covid. This is one of the best videos I have come across. Can't thank you enough for this!
What are you signs of MACS
POTS is a very very real condition and I’m so sorry that there are so many of you struggling with Drs with this. Unfortunately this is normal. To understand POTS, and to learn how to test yourself with what we call “the poor mans tilt table test”, I’d suggest joining POTS UK on Facebook.
Something else I’d like to mention in regards to MCAS, is one of the mediators called tryptase that is released. We have learned this mediator is commonly known as the “meat tenderiser” of the connective tissues, resulting in over dilation of the blood vessels, blood pooling and yep, worse POTS symptoms. As a general rule I believe there are most likely more females than males that have POTS due to the connective tissues in females being less dense. It is also very well known amongst females with connective tissue disorders that progesterone, in the form of contraception, makes POTS unbelievably worse. With this in mind, I seriously wonder if females with long covid may also be affected by this to some extent.
Hoping the best for you all. ❤️
(Ehlers Danlos, POTS, GP, MCAS gal)
What has helped you just to fucntion day to day
@@faith_over_fear8896 Fist off, I’ve had POTS for over 30 yrs for a completely different reason to long covid, so a lot of what I do may be completely irrelevant to your situation. The Dr in the video here pretty much covers everything. I’m not sure if she mentioned Hyperadrenergic POTS (that’s POTS with high blood pressure as opposed to low), which is why it is important to firstly get a bp monitor. If the bp is low, then high fluid and salt is one of the first steps. Most tips include: Avoid sports drinks laced with sugar as the ‘crash’ that comes afterwards isn’t going to help. Avoid heat and standing in showers. Eat small regular meals, large meals results in blood rushing to the stomach for digestion making symptoms worse. I do have MCAS which no doubt doesn’t help, so I stick to a low histamine diet and use supplements etc that Dr Afrin suggests.
I’d suggest learning as much as possible about POTs, dysautonomia & MCAS bc even after 30 yrs of educating myself, I can still watch a vid like this one and learn something new. Wishing you all the best.
Oh my goodness that explains why my prescribed progesterone cream cycle days are way more symptomatic. Thank you so much . Newly diagnosed with POTS 3 weeks after my second Pfizer. I had POTS as a teen after glandular fever. I recovered that time. This time I'm not so sure. It seems fairly unknown.
My second Pfizer dose caused POTS for me. I’m not an anti-vaxer, but I know it to be the case, as I was isolating due to a sick love one so I didn’t catch COVID, I know all my Long COVID symptoms are from the Pfizer dose.
@@markstaud I Was diagnosed with POTS in 2006. As a teen I had mono then a tough Labor with my daughter in 2003. Over the years have been able to be physically active. Got fully vaccinated/ Booster. Same shot as you. I started having frequent flare ups after. The end of Dec. 21 got a severe case of COVID-19 lasting a month and last I knew had scar tissue left at the bottom of my lungs. I am getting worse by the day whereas I am out of bed a few days then down again with what I describe as almost complete autonomic failure. My symptoms are migraines, vision problems, body temp regulation,brain fog, muscle, joint, nerve pain, fatigue, insomnia,tremors,digestive problems nausea and dizziness. Things went south very quick. I am going to my neurologist at Beth Israel Deaconess Center in Boston Mass. He is the Best on the East Coast. Good Luck.
This may be your best video yet. This doctor really understands the problem And has a real determination to treat it. Tons of good information here, thank you as always.
Thank you Lynn!
I can’t remember when I’ve ever felt so seen and so validated. Doctors too often hide behind the anxiety diagnosis because they don’t know what else to do. I really wish that this interview could have included the benefits of orthomolecular (vitamin) therapy. I’m finally reintroducing foods after 2.5 months of histamine intolerance after daily high doses of vitamin C, along with vitamins D and E, niacin, thiamin, zinc, lysine, quercetin, magnesium, omega-3, beef kidney, colostrum, a histamine friendly probiotic, and NAC. Also have had some occasional chiropractic adjustments to the cervical spine, massage therapy, and nightly Epsom salt foot soaks. My doctor’s only recommendation had been a beta blocker. I had to figure out that it was histamine intolerance myself and go on a low histamine diet. That, combined with the supplements, has done me a world of good. My energy is great, my sleep is great, and I finally feel like I’m getting back to “normal.”
What's the probiotic?
@@phantomtr1 It’s called Probiota HistaminX from Seeking Health.
www.seekinghealth.com/products/probiota-histaminx-60-capsules
I went through a similar journey, the beta blocker did not help me, but low histamine diet, no carbs, no gluten, no oxalates, various supplements similar to you and Daofoodplus before a meal is helping me recover. I eventually want to add more foods in. I sleep well, do floor exercises now and also use a rowing machine, started very slow and building those exercises slow. I get the occasional flare and its usually something I ate or overdoing it too much the day before thats the cause.
how long have you been taking these supplements before you could notice a significant change in your energy levels?
@@headfullofmusic422 it took 3 days for the effect of DAOfoodplus to kick in. And a few weeks to feel my energy level start going back up again. It was gradual, so much so I thought it wasn't working at first, but kept takng them as I'd bought them by then and thought what have I got to lose. Very glad I did. I still have to eat low histamine gluten free and no carbs as every time I try to switch it up. I react very badly. But if I stay on that diet I can feel that I am very very slowly getting better, with the occasional flare still. Just got to try stay stress free and not overdo exercises. But still increase exercising gradually.
The situation in the US is just as pathetic and most medical providers are not interested in genuinely helping patients.
So true .
Helping people is NOT their job!! Prescribe meds it’s! The only thing they know how to do.
It's always been this way , covid is simply exposing the rats .
In the USA health is an industry, instead of a service. My Houston's cardiologist told me: 'Do not do Covid research!' And I thought: 'If you were doing it, I wouldn't have to!!' It is so comforting to see her admiting we patients are getting more educated willing to understand what happens with us, without feeling offended. I wish I could afford a trip to UK and be her patient! I am a long hauler twice. First with covid, then with it's vaccine. Thank you so much for being here with this excellent work accesible for all of us!!
Dr. Blishsteyn is AMAZING. One of the best, most comprehensive interviews on this channel. Thanks for this.
Thank you Rob!
You have been doing a stellar job, Gez...glad you're getting back to good health.
Thank you for this!! Dr. Blitshteyn, we need many more doctors like you!!
Some Doctors are very prideful and they do not read, they’re all say it’s psychological and lack of sleep instead of really taking the time to listen to their patients and actually studying what’s happening to their patients. It’s very sad here in the US that there’s not much help.
Agree! You think by now an open mind would be best..Seeing that a large percentage is on this page..
@@shelleylannon2245 exactly my point.
Exactly the same in india too , last year i had all the symptoms and my test came negative but now i ma long hauler, i went to numerous hospitals but all of them said i ma phycho, they are saying ur just searching up the symptoms and panicking, seeing in RUclips and panicking, even my family members told that i am gone psycho and they tried to keep me in jail with mad people, what kinda day is this, it was best to die with the active covid 19 infection last year than this kinda day would have never come
@@madgamerbtr7375 God is gonna heal you, you better hold on because God is gonna shame the devil in your presence … stay faithful 🙏🏽❤️
They are not doctors. But hacks. Only there for a paycheck. mediocre hacks. Into gaslighting like Faucci and that ilk.
Thank you so much! This video made me cry, knowing that someone gets it and advocates for physiology v. Psychology. Every doctor I’ve talked to points to my negative test results and tells me all my sx must be due to anxiety or depression. Is anyone able to ask Dr S if heart rate variability is a reliable indicator of dysautonomia? My Apple Watch has noted my HRV has been chronically low with huge spikes of recovery during or immediately following intense and acute pain. There’s one NIH article noting low HRV indicates overactive sympathetic nervous system, but she didn’t mention this so I am curious. Thx for any info anyone has on this and thank you for these videos which give me such hope!
I’ve been suffering from severe constipation and motility disorders after COVID - and then SIBO, Candida, and then MCAS, and coccigodinia - have not been able to sit for two years now (which for an academic is all the more disabling). I could survive only thanks to my own research, which led me here, and a lot of prayer. I could also recommend micro current devices such as scenar, prolog, and ENART… Standard medicine was totally unhelpful - thank you for all your work 🙏
Another great video. You have been an invaluable resource for me and I can’t thank you enough!
Our daughter had symptoms start at 13 and 3 years later (now 16) we find out she has NCS and POTS. It is extremely debilitating in her case. Multiple systems in her body are involved. We live in the DFW area and have to drive to Houston where there is the only pediatric dysautonomia specialist in TX. Currently she isn’t responding well to the recommendations and it has affected her life in a MAJOR way. She was gaslighted by the pediatric medical field for years! Our prayer is that she pulls through! Our fear is she is in Autonomic failure not just dysfunction.
Yes. We need more Drs n medical professionals to care
Thanks Gez, excellent as usual. I have all the symptoms but my Dr refuses to refer me as it’s just anxiety! Keep fighting the fight 💪
Thanks Stephen!
Time to fire his lazy butt .
Did you take the meds did it help?
Same they say I have anxiety , and I refused to take the medication they give me I know it’s not anxiety , THERES soemthing wrong with the nervous systems causing all these symptoms…
@@glisciousful same I refuse so now each time I go, they say well you didnt take the medicine so it's most likely anxiety 😭 no its not.
Sadly most doctors are only in it for the pay check and are not willing to do the extra work. It’s easier for them to just say it’s in our heads and just move on to their next patient. Only committed doctors are the ones doing research about it and listening to their patients. Those are the true heroes.
I love her ❤️
She is so right about doctors not caring enough to help diagnose this. It’s passing the buck and here is some anxiety meds. She is also right about how this is a complex syndrome and there is alot of angles to consider due to overlapping other issues.
Thank you, Gez, for sharing this interview with all of us.
It’s a pleasure Barbara!
Since fall 2020. I worked through the extreme pain and fatigue but it took a long time and started with 2 3 minutes of activity now can do a few hrs with breaks and less pain. This is such a valuable video. The more I understand the more I can deal with this. Thank you so much.
Thank you!!! Even I was starting to doubt me!!
Excellent video and spot on content. I was looking for a comprehensive talk on this subject of long Covid.
Your guest ticked off all the boxes to my questions.
She is a Stellar physician. Clearly explains all the un answered questions.
You fellas asked great questions with good imput.
Thanks so much, truly appreciate your effort to bring this to the public.
Such a wise woman! I have learned a lot. Suffering from long covid for nearny 2 years. Being pushed by my GP to take antidepressants that made me much wors and lowered my blood preassure (80/50!). It was very informative video. Great work!
There needs to be Covid Long Haul Clinics in each state, the health departments in each state need to invest in this and put in as much effort as they do pushing the vaccine. This virus affects not only your body, but your livelihood, mental health, not to mention the isolation. So many people are trying to treat themselves, which shows lack of support by their doctors or health care providers, most of us probably go to walk in clinics and you would have to be referred to many doctors to sort this out. It needs a great team of doctors to be able to deal with all the symptoms as there are many. May we all feel well soon.
Agreed
Thank you so much for this work. I really do hope that in your expert series, you also cover gut issues and how to sort them out. Much love to you
Triple comment - Gut Issues (needing enzymes in order to digest, loose stool, not sure what I can eat - background of mostly veg all organic non processed . . . but digestion is poor)
I've had horrific gut issues with the dysautonomia and POTS. The gastroenterologist was not helpful, actually hurtful, prescribing PPIs that caused SIBO (Small Intestinal Bacterial Overgrowth). The symptoms always seemed to be those of gastroparesis, but he wouldn't do a food transit time test. I was able to get my GP to try Xifaxan in case I did have SIBO, and sure enough, it cured that. But I still have slow gut transit time. All that on top of most of the other POTS symptoms. All I want to do is lie in bed, but won't let myself do it, as hard as it is. I'm very slowly improving, forcing myself to go to yoga class five days a week even though I feel like I am going to fall over, and exercise intolerance causes me to be wiped out for the rest of the day.
Another excellent video in this series. Really interesting insights into POTS from Svetlana. And yes, the havoc caused by the Covid pandemic is well and truly compounded by the intellectual laziness of much of the medical profession.
If 15% of people are making a full recovery from lond covid, that's a marked improvement over recovery rates from ME, so maybe our health systems are learning! Either way, it may sound terrible for everyone else to see such poor outcomes, but for those of us who've been stuck in limbo for years this is good news.
MALADETS!!!! Bravo, Dr. Svetlana!!!! Thank you 🙏🏻
God Bless you Dr. Blitshtoyn. Wish I could take you to my Drs with me. I have two Drs (Cardio & GI) who each have a small piece of the puzzle. But easily back off. I need ONE to carry it through to healing me. See them each one time in 3 months just doesn’t work! Thank you.
Justine in Connecticut USA
I'm very happy and encouraged to see a double blind placebo trial end, and the results are very encouraging! A larger trial will follow soon which will help optimize the dosages. I'm very pleased !
Some feel 70 percent improvement . Some feel improvement with most symptoms . What is Interesting is the improvement over months just keeps getting better. I Saw participants who could not make a meal even due to being so fragile do things again and be out and about , and some return to work made me very excited!
Only if the larger trial starts next months hopefully there is a chance by next summer it could be approved for long covid since long covid is like the invisible pandemic affecting hundred of millions likely .
I have been looking for treatments since March 2020 and used my connections to see anything that may help and share with the community. I appreciate your work very much as you are the voice of many .
@@theancientsancients1769a yrar on from your comment - what aand where are the results from this trial?
Brilliant episode. Densely packed with clinical pearls and guidance for approaching POTS! Thank you.
You are truly inspiring and have helped me handle my Long Covid symptoms for the last 6 months. Mine seemed very much like POTS and my hr has now gone back to normal a month ago. You have helped me and others BIG TIME!
Thanks Douglas!
How did you get better
@@phantomtr1 I really dont know. I did everything though...diet (organic) with way more veggies. Vitamins that help mitochondrial function. Being on a schedule for sleeping & eating to match circadian rhythm. These all helped my energy levels and other symptoms but not much my heart palpitations. I got IV at the ER one day and they told me all my results looked good and then from there my HR which was stuck in the 90's dropped to 65bpm. Then slowly for a couple months my hr with exercise dropped to normal levels to. I'm still kinda off with dizziness and weird symptoms but nothing like before.
Douglas you are the only person that I have heard recovered from post covid pots!!!! How are you now and out of curiosity which i
IV did you get and do you have any ideas what turned you around?
@@MrDjEXPOSED thanks for reply. I need to start doing the sleeping schedule. What do u mean by eating to match circadian rhythm?
It’s been 6 months since I have had Covid and all my tests came back normal , but I still have shortness of breathe while doing minimal exercise, heart starts racing like crazy during exercise, panic attacks , , some chest and back pain , feeling of rocking back and forth when I am standing still or sitting down , and mental concentration fatigue , . Currently I am adding minor strength training 4 days a week and trying to walk at least 9,000 -10,000 stepsa day , although I am way better than I was 6 months ago I still am not close to where I was pre Covid …I’m a 34 year old male
Be careful with that step count - I would take a few days of lower activity levels and see if it helps. You may be pushing it too hard for where you are in your recovery
@@RUNDMC1 thank you , I am finally going to go to a POST Covid clinic here in the USA and hoping they can help me out . It’s especially made for long haulers
Thank you that’s encouraging and pleased you are feeling better- did you have POTs?
@@patriciabryant8892 no I was never diagnosed with it , the doctors just said things will get better , the doctors really can’t help me anymore , what can they do ? How long will it take for me to feel like I am back to normal . Will I be able to exercise or have the stamina did I have before ? I am only 35 years old . It is very disheartening..
@@glisciousful It's really awful & I have the same fears but........do be careful - I'm with Gez - slowly but surely & don't push yourself as you don't want to crash again -
Thank you for validating my concerns, 12 months after COVID infection I still have no medical professional in my corner who seems to NOT think its all in my head. I can't work and do the other ADL that I used to, am quite sure that I would fail the poor man's tilt test yet its never been suggested to me by a doctor😢
I thought this was an excellent video, - and she kindly highlights neuropathy. Neuropathic pain is my worst symptom by far, and seems to be under-reported.
Many have that too. Niacin may help with that
Yes I got immediate relief from acupuncture and sublingual B12
24:00 wow, literally described my entire 1,5 year long GP treatment on point... LITERALLY ON POINT.
I love this Dr!!!!!! This needs to be a PSA put on blast. She is amazing as are the interviewers
Thanks!
I'm from Scotland, I've had ME for 28 years and had Covid very mild during the first wave before testing; long story short 3.5 years later, thanks to people like you and RUclips I've proven that I have Orthostatic Hypotension and POTS like symptoms - my doctor waved my evidence away saying it proves I have anxiety despite my BP dropping by well over 20 - at times even 30, my pulse pressure being as low as 12 and my HR 118 trying to compensate, I'm told my bloods are perfect, BP sitting is amazing 115/75 and HR is 65 while I'm sitting so why am I testing myself, I clearly have mental health issues 😮. Come on UK, why are patients eager to learn more about this than doctors?
Excellent book for this:
Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition
Propranolol has been invaluable to me for managing my POTS, exercise intolerance, and fatigue - I definitely fit in the dysautonomia side of the LC spectrum tho
Also this video was outstanding
You have low blood pressure? Dysautonomia, MCAS go hand in hand with EDS and dysautonomia doesn’t mean Pots.
I asked my doc for Propranolol but they are not prescribing it because I have a history of childhood asthma (even though I am in my late 30s now). I think it may help my POTs like symptoms but I also need it for severe situational anxiety which has devastated my work life in particular. Not quite sure what to do.
@@tonyg4058 Propranolol helps my POTS tremendously, and well as extra salt and about three liters of water a day to keep my blood volume up so the heart doesn't have to work so hard. That asthma thing sure does sound lame. I used to have asthma too, and can't imagine how propranolol could bring it back. It certainly has not.
@@paulah.9415 I managed to get Propranolol in the end. Gave me devastating depression. Had to come off it, no way I could carry on with it. Glad that it's helped your POTS.
I sent this to my GP bc I was her first POTS patient. Thank this was amazing. I have POTS for the past 7 years. It took me 5 years to get a proper diagnosis. I knew if I got Covid I would be dealing with all this.
I have a grand daughter who has suffered her whole life. Spent hours, time and money doctor after doctor and she has all of these symptoms but no doctors has helped. They don’t know what they always say they can find nothing. It’s heartbreaking watching her lay in her bedroom alone, depressed and feeling hopeless. I need a good doctor for her. Breaks my heart. It makes the whole family feel hopeless.
Hi Gez, keep up the great work.
I have also been told by doctors that my HR abnormalities were due to anxiety due to ecg’s /heart scans/X-rays/blood work/ being all clear. Very interesting that pots has some form of medication to help. The biggest thing for me is the sleep degradation After a week of work and being in such a fight or flight state that I struggle to sleep.
I’ve also noticed I feel worse with certain pasta so avoiding gluten makes sense.
Have you heard of medical median? Talks about using celery juice to help clear the body. Worth a try.
Michael
I haven’t heard of that but I have heard of celery being good!
HI Michael, been sick since 3/2020, last year consuming low amount of celery juice ( 2 ribs) helped. I also gargled with it, maybe cleaning the tonsils helps??
@@davidm6383 that’s good news. I’m investing in a juicer to help increase my celery intake and fruits. Can’t hurt to try
@@michaelgeorgallis9350 I would look up celery juice and oxalic acid, just to be up on that aspect of potentially over juicing .
Thank you for such an educational video. I’m dealing with post vaccine POTS and I’m still waiting for my tests for a diagnosis but I’m so incredibly sick and it’s been 6 months. I pray we start studying both because I’m convinced that Long Covid and adverse reactions are very similar. I have excruciating pain, neuropathy, neurological symptoms and Mono just like Long Covid as well as obvious to me Mass Cell or something else that has activated my autoimmune response and it won’t turn back off. I pray we are studied asap because getting treatment or even a diagnosis has been impossible in the last 6 months. I had to explain to my neurologist that I wasn’t too young to have POTS (I’m 41) and that Mono was absolutely happening Post Covid or post vaccine. She didn’t believe me until her med student googled it. We need help ASAP! Thank you
I got POTS from my second Pfizer dose. I’m struggling in a very similar manner to you. I’m at my whit’s end to be honest.
@@markstaud I’m so sorry 😢 since I commented I was diagnosed with Dysautonomia:parasympathetic withdrawal and sympathetic withdrawal, small fiber neuropathy and MCAS. After a few months of IVERMECTIN and medication for the dysautonomia I’m doing so much better! If you are still suffering find a good Cardiologist who can help diagnose your dysautonomia with a tilt table test or a standing EKG test. They have excellent medications for it like Midodrine and Fludrocortisone. It was also my 2nd Pfizer vaccine.
Have you been checked for HHV 6? It is notorious for causing pain and is highly treatable with Valycte.
@@aliashurricane9349how are you now
@@aliashurricane9349how do you take ivermectin
I developed and recovered from dysautonomia after COVID when I found out the cause (the medical profession is clueless). My dysautonomia turned out to be caused by wireless electronics, also known as electromagnetic hypersensitivity. When I eliminated all wireless devices from my immediate environment. I recovered fully. No cell phone, no wifi, no laptops, no apple watches, no I pad, no smart utility meters, etc. These devices all run on high frequency electricity that travels at the speed of light through the air we breath. These high frequency electromagnetic fields are what transfers data between wireless devices. Unfortunately, EMF's can also disrupt the autonomic nervous system. I am a retired physician, previously a board certified general surgeon. I doubt my profession will ever figure this out. I have tried to tell them.
May I ask you for your symptoms please? I’ve been having shortness of breath more than a year now but my lungs and heart are ok. Do you also have shortness of breath?
@@Hudson.. nausea, dizziness, feeling off balance, tachycardia, pressure inside my head and behind my eyes, ears ringing, brain fog, not being able to focus or think or follow a conversation, chest pain, shortness of breath, headache, blurred vision, near fainting, and the list goes on...
Thank you so much @savedbygrace338! It’s been quite stressful the symtomps! I will try to reduce as much as possible the time using these devices! Beside that do you have any advices? Thank you so much once again!
Thank you so much for this podcast! It is the best structured and informative video on Pots / Long Covid I have ever seen
🙏🏻🙏🏻🙏🏻
Really informative and helpful. Thank you so much! x
Pleasure, Em!
I have a hunch that POTS is not the most common but rather just the most commonly observed and acknowledged and recorded version because of the simple test. Doctors like something that fits into a nice clean box where they can just run a standardized test and it spits out a yes or no. I would even suspect that POTS itself (if it can be distinguished fully from other possibly related ailments) is often not even the biggest problem in those experiencing POTS; as it seems they/we all have other undiagnosed issues also
Agreed! I feel better standing than lying down; can't sleep at all despite zero anxiety, etc. POTS doesn't really describe my symptoms but autonomic dysfunction must be the case if I can't sleep even when I'm actually tired.
@@lukaskidd4621 Yeah, luckily we have the POTS test at least for those of us that need a diagnosis for one reason or another. The medical community's misunderstanding of this condition is quite sad, we are still so primitive in our medicine. We have some brain scans of long covid patients showing gray matter loss - validating our neurological issues as something other than psychosomatic, but we are truly at a pathetic time for brain medicine - they don't even know what gray matter does. They're just grasping for clues at the few parts they can produce an image or scan on without any deep understanding. Future humans will look back at this period of medicine with the same pity and disdain we look at doctors using leaches and proclaiming yellow bile levels are too high lol. We're not far off that. I just wish doctors would have the perspective to realize where we are rather than the arrogance to assume we're in an excellent age of medicine and understanding now.
Amazing advice Dr Svetlana Blitshteyn am watching in the background whilst busy bit will watch again tonight later on whilst relaxing
Think I have long COVID…..
Checking with drs atm
Something strange... I had all those symptoms chronically and severely precovid. I could barely stand, 10 minutes. Fell asleep everywhere. Heart would suddenly race. Over 150s at times! Scary.
Then after 3 weeks fighting serious covid infection, and a month more, I feel better than precovid!! I used supplements which I continue in much lower doses. Temp in covid was 103.8 for about 4 days. Mostly water diet bc I could not stand up to get food, but was hungry.
Not sure what changed, but I fell better than full year precovid. Theres hope! 🙂
I’ve never had a positive TT test or stand test, I was however diagnosed with inappropriate tachycardia. It’s very upsetting, I can ride a recumbent bike for an hour yet bending over or doing anything that involves stooping/bending over or crouching wipes me out. Just cleaning the house or picking something off the floor and I have to lie down. I pace myself by resting on my back. I wish there were a name for this. The heat really wipes me out, I’m not long haul, but I’ve been watching your channel be yo have MCAS/ME/CFS post viral issues after EBV.
I learned to tie my shoe standing on one foot specifically because bending down made me feel faint. Glad I'm not alone on this!
Gee, it does seem as if you've been suffering 'long haul' - from ebv, no? Like me you are leaving no stone unturned (myself with an autoimmune condition that overlaps w/the overactive sympathetic and various neuro issues which are increasing)
cjm
Anyone else with an overactive parasympathetic nervous system also? I would love to hear this side acknowledged and spoken about too. Some call it Complex Dysautonomia. This video is fabulous, and Dr Svetlana mentioned of course that the parasympathetic can also be dysfunctional as in underactive, but in some it is overactive. I have POTS/OI but when I get a big parasympathetic slump, sometimes my heart rate doesn't rise at all when I stand up and it's too slow.
It is not under active..it is being suppressed by the sympathetic system..fight flight system is more dominant for obvious survival purposes… stimulate your vagus nerve
@@jaydonnelly3224 thanks for replying but I think you misread my comment, I said an over-active parasympathetic, not underactive. It's also called high vagal tone.
I have POTS and i have noticed that when my HR DOESNT jump 30+ upon standing and maybe only raises 10, i am more symptomatic generally. Thanks for the comment, i may look into complex dysautonomia
@@connormahan1907 Yes exactly. I experience the very same thing. The Dr whose videos informed me about Complex Dysautonomia is Dr Artour Rakhimov. He has an easy '6 minute standing to lying down' HR test to assess it. And he advocates Buteyko breathing techniques for treatment. I haven't tried that yet though.
Thank you to Gez and Asad and neurologist. Very interesting and helpful 🙏
That explains why I had a bad reaction/ intolerance to Bisoprolol. Perhaps too high a dose!
Thanks so much for this video! Great job!
Thanks Aya!
I have hyperpots from covid. I cant even take a claritin or an antibiotic without my heart skyrocketing. Yes, I'm better than I was a year ago, but still no where near where I need to be. I research... research... research... and have to educate doctors what is going on. I keep gluten out of my diet and eat more fruits and oats and feel better for changing my diet.
Hey how are you doing now
I hear you I have cfs/me and any meds I take messed with my heart and makes me worse. Even ibuprofen messes me up 😭
@@KatieBarboza much better. I just cant eat avocados or bananas. If I keep my diet low histamine I feel pretty good.
Hi! How did you no you have hyperpots
My God I loved this video she summated my whole experience with the UK Medical sector - tests are fine A +B = C Socratean logic = Doctor says I’m absolutely fine
Thank you so much. This may be the link to year's of disorders for me as well as the effects of long covid. Tytyty
I am a taichi and Qigong praticitioner and I know that those are ancient internal martial arts that empower autonomic system and decrease sympatatetic system, the is for taichii you must use a stand position but for Qigong you can do it seated on a chair specially zhineng Qigong.Maybe it will be a good option.
Truly informative and helpful
Thanks Maura!
Thank you all so much x
She is amazing! So thorough!
Also I was diagnosed with dysautonomia in 1990 with tilt table test. My dysautonomia improved when I started taking thyroid hormone when a test said my TSH was high
Did symptoms improve
@@champ92868 yes they did my mitral valve prolapse got better my anxiety got better and my orthostatic hypotension improved when I treated my thyroid
@@angelagarner1904 awesome that's good to here , I have an auto immune marker showing up for hashimotos and anxiety is front of the list for this issue so I hope I get resolution to this as well 🙏 ty
@@champ92868 I hope it helps you! Make sure you test free T4 and freeT3 also and make sure numbers are at least halfway in the range that is given you can order at home tests I get mine through everlywell but they have been a bit slow lately, best of luck!
@@angelagarner1904 ty I appreciate the advice
Having cfs for yrs unable to relax most of the time I know my sympathetic system was on high alert 24 7. I found thc and it puts me in a deep relaxed state so well ..it allows me to recover more during the night.
Thanks Gez! Incredibly informative once again 🤗
Thanks Bradley! How are you doing these days?
@@RUNDMC1 I’m doing well thanks!! Still incredibly frustrated by the lack of running, it’s mainly just my lungs/breathing still being laboured, but It’s not an issue when running super slow- so I’ve been building up plod miles for a while haha! Seems anything moderate or intense sends me into a relapse of more symptoms still though. Interestingly I’m able to do strength work (including high loads) with no issues
How’s things with you mate? 🤗
Bradley Freeman Are you suffering from any PEM after running? I’m doing better recently but not going near exercise yet!
@@RUNDMC1 Great to hear that you’re feeling a-bit better!
Re PEN, not since I’ve been doing lighter paces, I’ve tended to mix most of the runs up with hiking (In the Peak District) to be honest, so it’s more run/walk (keeping the HR low), but it’s made such a difference. Once the heart rate is high the I struggle with PEM though. Found it crazy how fast symptoms cascade when fractionally above tolerance so just been weary of that,
Thank you so much for this.
Thanks David!
Thank you so much for this beautiful channel I’m a long hauler
She described my sleeping patterns to a T 😁👍 my dreams are off the chain 🙃
Nice work Gez!
I find breathe work massively helpful to calm the nervous system down
Agree 👍
Me too
It's one positive outcome that's arisen after this terrible illness , learning how to regulate your own autonomic nervous system and strengthen the immune system by trying to stay calm . I'd be interested to hear of any recommendations re breathe work . I do Win Hoff techniques every night and most mornings and the 478 breathing . I'm trying to be mindful about breathing in through the nose too. I had to gain control back as I was definitely in fight or flight mode for months due to the severity of the ongoing symptoms.
I am calm still can't sleep at all :(
Yes!
I am so grateful for this. I’m about to undergo a lumbar puncture to discover the source of my new seizures which seem to be associated with long Lyme and long COVID’s chain of events and no one has ever done a PoTS test on me. I recently was in the hospital and asked if they would take my blood pressure standing up because I got so dizzy and the nurse said she wasn’t allowed to. I’ve done this PoTS test twice myself now and it’s clear I have that syndrome. That may lead to some much more clarity and I’m so grateful. I’ll be seeking out the NIH study and looking into Serum Immunoglobulin. I have had good improvement with Hydroxychloroquine and an alkaline diet including Burdock root (I’ve been gluten and dairy free for 30 years) and jivamukti yoga modified to 20-45 minutes and walking 20-30 minutes. With two days of rest per week. Best of luck!
Thank you Gez, you are incredibly knowledgeable, every time you name symptoms, a light bulb goes off, like your analogy of the jellied spine weakness, I have it.. any chance of putting together a massive hybrid Visio flowchart the would reflect the knowlege gained from all there videos.
I’m not sure I could get my head around what that would look like!
Thanks for the video as per Gez! Though a little frightening to hear only 15% recover, the thought of never being able to exercise again is a pretty grim prospect😞
What’s your thoughts on if we tackle the viral debris, then the dysautonomia part might work itself out, as the ‘trigger’ per day has been removed?
I think that’s a good shot - the alternative is training the body to not respond to the viral trigger. Although the methods of doing that are less conventional!
@@RUNDMC1 very true! I must say, with a bit of a mindset shift and almost ‘telling’ myself that nothing is wrong when I feel symtpoms coming on after exercise etc. I have certainly felt they grip me less. Ability to do this is also trained by things like meditation, breathing etc.
Definitely think there’s contributing factors from both sides, also would be interested to see why viruses I know I had (EB) lay dormant and un triggered and what differentiates them to covid, or if maybe Covid triggered them too!
Sorry for the brain dump, it’s nice to have somewhere to bounce these ideas around😂
@@harryboby7563 Hey Harry,
I agree with this. Find doing activity then having a small break and breathing really helps. Maybe a bit impractical but allows me to at least do some normal things.
I was wondering the exact same thing.
@@harryboby7563they can be reactivated. My teen daighter with long.c was found by big immune blood test done ny her nutritionist to have reactivated chickenpox and human parvovirus. Now treatrd with microimmunotherapy for general immune response, mitochondria probs and the reactivated vira one at a time, over some months
Interesting points
Awesome!Thank you !
I am 75 years old, fully vaccinated and have had long Covid for 12 weeks. It presented just 7 days after I had a very mild case of Covid. I am now completely disabled due to long Covid. So I don’t fit any criteria for long Covid, but here I am.
Older people can get it too, although it’s less common.
I've lived what I think is POTS for over 50 years. When I first brought this to a doctor's attention when I was 14, he suspect Addison's and predicted I'd end up with Addison's. I don't know if POTS was known back then, but no one picked up on it and he was the only one who took me seriously. Eventually it was debilitating and even my pillow was too much of an incline. I'd pass out if I tried to cross a room. I never got a diagnosis because at the time, the standard was a tilt table test and the only one available was about 5 hours away and I was too sick to travel (couldn't sit up in the car) and I was already disabled with ME/CFS. I'd added salt to my water, but apparently it wasn't enough. It wasn't until I added 3/4 tsp of salt to 55 ounces of water (any more salt than that and I retain too much water in my hands and ankles) and continued to salt my food (whether I care for it or not), and then, I went gluten free did I experience much relief. I still get the symptoms; I can't stand long due to the ME/CFS anyway. I do better when walking if I have the energy, but standing for any length of time is still difficult and will really do me in. I do breathwork and meditate... as much because I have time on my hands and because it's stressful being disabled.
One of my problems is low heart rate (it's always been low and I have at least 3 genes for this) - bradycardia - , and most doctors don't understand that a 30 beat increase can be indicative of POTs. (Besides most see the low heart rate and take it as a sign that I'm super healthy.) Most look at a range of numbers based on women's average heart rate. Well mine is in the mid 40s to 50s. This generally means for me that a heart rate over 80 some when upright begins to get too much. When my heart rate exceeds about 84 beats when I'm moving around it's a sign I'm doing too much with my ME/CFS (that is, if I'm trying not to be anaerobic and stay within my energy envelope). I shouldn't have to train doctors on POTS and people with low heart rates as their norm. This information is easily found on the Internet.
Another is that I finally moved to an area where there was a tilt table. It was offered to me and I was told I'd need to stop taking the salt to do the test and get the diagnosis. Well, if I don't get enough salt I have horrible low blood volume cramping at the tops of my feet as well as debilitating symptoms. The idea of going off the salt bring tears to my eyes. I can't tolerate the cramping - I'd need to arrange someone to take me to the appointment and manage a wheelchair (because I couldn't remain upright). If I even fail to get all of the salt I need each day the cramping will start. I don't understand why these symptoms and how I manage them can't be enough to get an official diagnosis.
Maybe this helps??? Doesn't hurt to ask them - ruclips.net/video/JwjJs5ZHKJI/видео.html
Maybe Hawthorn Berry and Ajuna Bark powders for heart palpitations?
Other MCAS info - ruclips.net/video/sICD0Kn6pR4/видео.html
Plummeting salt levels are dangerous. This can cause seizures or death. I know because I have hyponatremia (low blood sodium) along with the POTS, and was needing 4 teaspoons of salt per day, taken all throughout the day, to keep my blood pressure at a normal level. My doctor prescribed fludrocortisone at 0.1 mg each morning. It corrected the problem, and I no longer have to take my blood pressure every hour. I didn't have hyponatremia before my first case of covid, March 2020, so I don't know if that could have caused it. The POTS didn't start until I was reinfected with Omicron. I will see an endocrinologist next month and perhaps learn more. Currently my GP has been treating me. So far other specialists have been useless, other than the cardiologist who diagnosed me with post-Omicron POTS.
Thank you for mentioning SFSN!
In Canada my GP's eyes glaze over with any of this... there are no tests for small fibre.. , MCAS, or any blood makeup specifics outside of the standard tests.
There is a test for small fiber neuropathy. A neurologist can perform it. It’s called a skin punch biopsy. It will confirm if you have SFN, though I’m not sure how reliable the tests are, rate of false negatives, etc.
Thanks Gez. After 6 month of covid, my anxiety has really increased. I've tried sertraline, losartran, lexapro, amitriptyline and busbar. They all made my anxiety extremely worse. Lorazepam is the only thing that helps but it is not a long term drug. Hopefully there is something that works. My body seems very sensitive to any stimulus since covid. Any suggestions. Thanks
Sounds a bit ‘light’ but I would suggest meditation and breathwork. Find an app that you get along with. I can recommend Flourish and Headspace.
Learning to breathe properly and deeply has helped me to stay calm
My body hates all meds now too but especially most ssri..i have had horrible anxiety since covid including ptsd and depression ..mirtazapine has allowed me a mostly normal mental state with flare ups occasionally but the mirtazapine is easy for me personally to tolerate when i started and helped within a month and has continued to help after a year.
Ashgawanda, lions mane, d3, cold showers, cbd oil.
Breathwork is important..but you really have to dig deep..try buteyko or wim hof. You need to rehabilitate your breathing patterns.
Also reduce inflammation with pynagenonal, black seed oil, but c etc etc.
I was diagnosed with neurocardiogenic syncope when I was 12, I wonder if that actually predisposed me for long COVID.
I wish I could talk to these three experts and my doctor on a zoom call because I’m so confused and worried the specifics of what I have and would pay a fortune for it :(
My father kept being told he was an alcoholic cus he got such severe shakes after covud infection a month later, he kept losing his balance and said it passes after a couple minutes but fell (pushed over feeling) finally got meds to treat it! He was very active before hand
Great, great video. Great doctor!
Whoa! This is the first time I heard the term post-bacterial. I've struggled most of my life with fatigue, intermittent fainting as a child, bradycardia as an adult finally treated w/a pacemaker when I was 54. My symptoms became much worse after pacemaker surgery and I blamed the pacemaker or the surgery, for a long time. Drs said that surgery was too minor to trigger anything, and I'm not aware of having had a virus. But I did have scarlet fever as a child and wonder of that might be responsible and the pacemaker surgery, though minor, was just too much.
Look up Group A Streptococci GAS. There is a syndrome associated with it in children. I can't remember the name but I read about it
I wished they talked more about small fiber neuropathy . :( I don't have pots or mast but I have nerve pain in hands and legs
Cardio MRI, yes yes yes and more yes. This could be the key to unlocking the puzzle. My doctor said it is a expensive test but I was in the MRI scanner for a back problem whilst exhibiting Long Covid symtoms and experiencing heart discomfort and shortness of breath, fatigue, tinnitus, pins and needles and more. The outcome was the discovery of a torn disk in my lower spine and compressed nerves. I am suprised that while I was in the scanner, a heart scan was not conducted also. I was scanned for a duration of 25 minutes. I did have the Echocardiogram test but it was normal, although the cardiologist kept telling me to breathe during the 20 minute test , I was underbreathing. I have had these symtoms for many years now and pre Covid infection, no vaccinations. My symtoms worsened after a second Covid infection which was a lot more severe than the first . Drinking carbonated water regularly and gentle cycle rides in the fresh air. The more active I am , the less I notice the symtoms but walking up stairs really exacerbates the shortness of breath. My sinuses have been congested for years since Non Specific Urethritis diagnosed in 1995. Never recovered from.
Thank you for your valuable insight and patient empathy. Best wishes.
Did you do Cardiac MRI and what did it show?
What a great video. I don’t know where to start though. I can’t even imagine trying to explain this to my GP. Who should I see?
I am 4 months post covid. I am having a lot of issue with my heart rate and breathing
There are private neurologists who ought to be very familiar with dysautonomia. Cardiologists too.
Drs are merely low ranking employees in a large corporation regulated not to think but to adhere to a standard plan that optimizes profit. At least in the US.
My son has been suffering 2 years now and what he doesnt understand is that while he suffers this disorders, me as a mother is completely depressed not being able to help him not able to do anything
From covid?