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.
@asdsad63 жыл бұрын
:O
@jiniyogini3643 жыл бұрын
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.
@barbarateresarhiannonsreal17563 жыл бұрын
@@saneben9917 THIS IS PERFECT!
@peanut9522 жыл бұрын
@@saneben9917 Thank you!
@Rinanathar2 жыл бұрын
@@saneben9917 nicely done. Thank you 🙏
@EllaSloman3 жыл бұрын
" 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 .
@faith_over_fear88963 жыл бұрын
I keep getting told its anxiety 😭
@EllaSloman3 жыл бұрын
@@faith_over_fear8896 that so unfair isn't it . Have you tried seeing somebody different ?
@faith_over_fear88963 жыл бұрын
@@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
@shelleylannon22453 жыл бұрын
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
@Cathy-ux9xd3 жыл бұрын
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.
@denisefirth61413 жыл бұрын
Wish we could make this compulsory viewing for British medics. Such an impressive speaker. Thanks to all concerned.
@lcb329993 жыл бұрын
American doctors need to see this as well. This was so informative.
@chesterwilberforce98323 ай бұрын
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.
@wendyhay13023 жыл бұрын
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.
@eugeniebreida3 жыл бұрын
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.
@wendyhay13023 жыл бұрын
@@eugeniebreida 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.
@eugeniebreida3 жыл бұрын
@@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.
@winterinbloom3 жыл бұрын
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.
@juliad83032 жыл бұрын
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.
@samikassou29443 жыл бұрын
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.
@barbarawarren94433 жыл бұрын
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.
@mishablinov65673 жыл бұрын
@@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...
@barbarateresarhiannonsreal17563 жыл бұрын
@@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!
@barbarawarren94433 жыл бұрын
@@barbarateresarhiannonsreal1756 I'm so glad for you, Barbara Teresa. 😀
@tanyawieczorek66032 жыл бұрын
@@barbarateresarhiannonsreal1756 what did the post-Covid clinic do for you?
@FPproductionz3 жыл бұрын
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.
@rudygonzales35893 жыл бұрын
@Sante Fe At Bay how are you now?
@davamckay2 жыл бұрын
Wow- I’ve noticed similar patterns too! It’s so strange! Glad I’m not the only one!
@glisciousful2 жыл бұрын
Exactly my heart rate will race up sometimes and I have to slow down
@paulah.94152 жыл бұрын
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.
@timmyschannel52 жыл бұрын
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
@jarrodmurphy97832 жыл бұрын
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.
@lukaskidd46212 жыл бұрын
What is the theory behind the cold showers? Retrigger an abnormal immune response to perhaps reverse the initial one?
@30bananaguy2 жыл бұрын
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.
@johnnyblockchain42382 жыл бұрын
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?
@jarrodmurphy97832 жыл бұрын
@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.
@lukaskidd46212 жыл бұрын
@@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.
@lynnmcbride92363 жыл бұрын
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.
@RUNDMC13 жыл бұрын
Thank you Lynn!
@jsmcclellan3 жыл бұрын
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
@RUNDMC13 жыл бұрын
Cheers Scott!
@coraleerobyn64023 жыл бұрын
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!
@juliaarambula31536 ай бұрын
What are you signs of MACS
@jelly03692 жыл бұрын
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.
@robgregson89303 жыл бұрын
Dr. Blishsteyn is AMAZING. One of the best, most comprehensive interviews on this channel. Thanks for this.
@RUNDMC13 жыл бұрын
Thank you Rob!
@robgregson89303 жыл бұрын
You have been doing a stellar job, Gez...glad you're getting back to good health.
@trishafrye53 Жыл бұрын
Thank you for this!! Dr. Blitshteyn, we need many more doctors like you!!
@samikassou29443 жыл бұрын
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.
@EllaSloman3 жыл бұрын
I'd second that ... Holistic approach is always great
@RUNDMC13 жыл бұрын
This is where I’m coming out on the subject too
@TheMadebymoi3 жыл бұрын
I’d also love to hear about HRV training
@emilyb55573 жыл бұрын
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).
@petersdotter13 жыл бұрын
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?
@reddawn82303 жыл бұрын
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.”
@phantomtr13 жыл бұрын
What's the probiotic?
@reddawn82303 жыл бұрын
@@phantomtr1 It’s called Probiota HistaminX from Seeking Health. www.seekinghealth.com/products/probiota-histaminx-60-capsules
@safjade3 жыл бұрын
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.
@headfullofmusic4223 жыл бұрын
how long have you been taking these supplements before you could notice a significant change in your energy levels?
@safjade3 жыл бұрын
@@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.
@barbarawarren94433 жыл бұрын
The situation in the US is just as pathetic and most medical providers are not interested in genuinely helping patients.
@sethsonofgod72153 жыл бұрын
So true .
@Butterflylovely53 жыл бұрын
Helping people is NOT their job!! Prescribe meds it’s! The only thing they know how to do.
@texasslingleadsomtingwong87513 жыл бұрын
It's always been this way , covid is simply exposing the rats .
@marinavillarino57683 жыл бұрын
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!!
@97kirstiann3 жыл бұрын
I love her ❤️
@TheKayannh3 жыл бұрын
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_fear88963 жыл бұрын
What has helped you just to fucntion day to day
@TheKayannh3 жыл бұрын
@@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.
@kd25333 жыл бұрын
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.
@markstaud2 жыл бұрын
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.
@ingaolsen12652 жыл бұрын
@@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.
@barbarawarren94433 жыл бұрын
Thank you, Gez, for sharing this interview with all of us.
@RUNDMC13 жыл бұрын
It’s a pleasure Barbara!
@mindynewman93623 жыл бұрын
Another great video. You have been an invaluable resource for me and I can’t thank you enough!
@kathrynleaser5093 Жыл бұрын
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.
@GreatFavorit Жыл бұрын
24:00 wow, literally described my entire 1,5 year long GP treatment on point... LITERALLY ON POINT.
@healergodwinks77963 жыл бұрын
Yes. We need more Drs n medical professionals to care
@taniaburton75593 жыл бұрын
Thank you!!! Even I was starting to doubt me!!
@maeb71573 жыл бұрын
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!
@JC-nb2jx2 жыл бұрын
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.
@ladyjayne77711 ай бұрын
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.
@juliaarambula31536 ай бұрын
Agreed
@spiritdoc9263 жыл бұрын
MALADETS!!!! Bravo, Dr. Svetlana!!!! Thank you 🙏🏻
@theancientsancients17693 жыл бұрын
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 !
@theancientsancients17693 жыл бұрын
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 .
@louisejackson19682 ай бұрын
@@theancientsancients1769a yrar on from your comment - what aand where are the results from this trial?
@stephenhocking94673 жыл бұрын
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 💪
@RUNDMC13 жыл бұрын
Thanks Stephen!
@texasslingleadsomtingwong87513 жыл бұрын
Time to fire his lazy butt .
@faith_over_fear88963 жыл бұрын
Did you take the meds did it help?
@glisciousful3 жыл бұрын
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…
@faith_over_fear88963 жыл бұрын
@@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.
@KetanPatel-ol4tx Жыл бұрын
Brilliant episode. Densely packed with clinical pearls and guidance for approaching POTS! Thank you.
@zlnine8272 Жыл бұрын
I love this Dr!!!!!! This needs to be a PSA put on blast. She is amazing as are the interviewers
@RUNDMC1 Жыл бұрын
Thanks!
@isisneteru67133 жыл бұрын
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
@eugeniebreida3 жыл бұрын
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)
@paulah.94152 жыл бұрын
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.
@lvee75693 жыл бұрын
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.
@aniafromlondon2 жыл бұрын
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!
@Jablicek3 жыл бұрын
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.
@glisciousful3 жыл бұрын
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
@RUNDMC13 жыл бұрын
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
@glisciousful3 жыл бұрын
@@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
@patriciabryant88923 жыл бұрын
Thank you that’s encouraging and pleased you are feeling better- did you have POTs?
@glisciousful3 жыл бұрын
@@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..
@patriciabryant88923 жыл бұрын
@@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 -
@MrDjEXPOSED3 жыл бұрын
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!
@RUNDMC13 жыл бұрын
Thanks Douglas!
@phantomtr13 жыл бұрын
How did you get better
@MrDjEXPOSED3 жыл бұрын
@@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.
@patriciabryant88923 жыл бұрын
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?
@phantomtr13 жыл бұрын
@@MrDjEXPOSED thanks for reply. I need to start doing the sleeping schedule. What do u mean by eating to match circadian rhythm?
@justinesimone53433 жыл бұрын
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
@sethsonofgod72153 жыл бұрын
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.
@shelleylannon22453 жыл бұрын
Agree! You think by now an open mind would be best..Seeing that a large percentage is on this page..
@sethsonofgod72153 жыл бұрын
@@shelleylannon2245 exactly my point.
@madgamerbtr73753 жыл бұрын
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 KZbin 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
@sethsonofgod72153 жыл бұрын
@@madgamerbtr7375 God is gonna heal you, you better hold on because God is gonna shame the devil in your presence … stay faithful 🙏🏽❤️
@jeanalice47322 жыл бұрын
They are not doctors. But hacks. Only there for a paycheck. mediocre hacks. Into gaslighting like Faucci and that ilk.
@juliaarambula31536 ай бұрын
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.
@barbaraosimani62857 ай бұрын
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 🙏
@erwin73713 жыл бұрын
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.
@tavernier98043 жыл бұрын
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.
@theancientsancients17693 жыл бұрын
Many have that too. Niacin may help with that
@ShaeDlyn2 жыл бұрын
Yes I got immediate relief from acupuncture and sublingual B12
@juliesauve6719 Жыл бұрын
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😢
@bobbyosborn9553 жыл бұрын
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
@bobbyosborn9553 жыл бұрын
Also this video was outstanding
@Butterflylovely53 жыл бұрын
You have low blood pressure? Dysautonomia, MCAS go hand in hand with EDS and dysautonomia doesn’t mean Pots.
@tonyg40583 жыл бұрын
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.
@paulah.94152 жыл бұрын
@@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.
@tonyg40582 жыл бұрын
@@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.
@TheShumoby3 жыл бұрын
Excellent book for this: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition
@DrSamanthaH19753 жыл бұрын
Really informative and helpful. Thank you so much! x
@RUNDMC13 жыл бұрын
Pleasure, Em!
@michaelgeorgallis93503 жыл бұрын
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
@RUNDMC13 жыл бұрын
I haven’t heard of that but I have heard of celery being good!
@davidm63833 жыл бұрын
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??
@michaelgeorgallis93503 жыл бұрын
@@davidm6383 that’s good news. I’m investing in a juicer to help increase my celery intake and fruits. Can’t hurt to try
@eugeniebreida3 жыл бұрын
@@michaelgeorgallis9350 I would look up celery juice and oxalic acid, just to be up on that aspect of potentially over juicing .
@theleakefamily55207 ай бұрын
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.
@amandagoodhart15312 жыл бұрын
She is amazing! So thorough!
@xamaqueen19022 жыл бұрын
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
@ayamohammed2293 жыл бұрын
Thanks so much for this video! Great job!
@RUNDMC13 жыл бұрын
Thanks Aya!
@RogueMomma252 жыл бұрын
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.
@maurasantangelo51523 жыл бұрын
Truly informative and helpful
@RUNDMC13 жыл бұрын
Thanks Maura!
@aliashurricane93492 жыл бұрын
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
@markstaud2 жыл бұрын
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.
@aliashurricane93492 жыл бұрын
@@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.
@susanthomas2599 Жыл бұрын
Have you been checked for HHV 6? It is notorious for causing pain and is highly treatable with Valycte.
@SuspectFrozen Жыл бұрын
@@aliashurricane9349how are you now
@SuspectFrozen Жыл бұрын
@@aliashurricane9349how do you take ivermectin
@gt36893 жыл бұрын
Nice work Gez!
@bradfreeman81493 жыл бұрын
Thanks Gez! Incredibly informative once again 🤗
@RUNDMC13 жыл бұрын
Thanks Bradley! How are you doing these days?
@bradfreeman81493 жыл бұрын
@@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? 🤗
@RUNDMC13 жыл бұрын
Bradley Freeman Are you suffering from any PEM after running? I’m doing better recently but not going near exercise yet!
@bradfreeman81493 жыл бұрын
@@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,
@lillianvalentine19753 жыл бұрын
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.
@FPproductionz3 жыл бұрын
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!
@eugeniebreida3 жыл бұрын
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)
@carolmarlin38523 жыл бұрын
cjm
@MrKelso853 жыл бұрын
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
@louellenowen79242 жыл бұрын
Awesome!Thank you !
@JC-nb2jx2 жыл бұрын
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
@sharonereaux16323 жыл бұрын
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.
@jaydonnelly32242 жыл бұрын
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
@sharonereaux16322 жыл бұрын
@@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.
@connormahan19072 жыл бұрын
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
@sharonereaux16322 жыл бұрын
@@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.
@godsgrace57772 жыл бұрын
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.
@elizabethevangeliummusicpr87302 жыл бұрын
Thank you so much for this beautiful channel I’m a long hauler
@chihuahuapixieprincess2482 Жыл бұрын
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 KZbin 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?
@dareks80003 жыл бұрын
Thank you so much for this.
@RUNDMC13 жыл бұрын
Thanks David!
@savedbygrace338 Жыл бұрын
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.
@Hudson.. Жыл бұрын
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?
@savedbygrace338 Жыл бұрын
@@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...
@Hudson.. Жыл бұрын
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!
@MichelleGray-n1n12 күн бұрын
I know what your saying because I too have those problems after Covid. The Long haul post covid symptoms are horrible. My Dr is researching and trying his best to help me. He is sending me to another Rheumatologist for second opinion since my other Rheumatologist has done nothing to help me. I see a Neurologist and Cardiologist as well. All my tests show normal. I have no underlying conditions so Drs know it's all post covid symptoms. I get pain/inflammation, heart palpitations, chest pains, shortness of breath, my HR will jump up high for no reason, I have nerves that run through my body, I get migraines, pressure in my head/behind my eyes, have ringing in my ears and if I do too much I'm down for days. Nothing has seemed to help with my pain/inflammation. I just started using Tumeric 1,000mg with black pepper. After taking it for a month I have noticed it's not as bad. My flares ups are less frequent. I'm going to talk to my Cardiologist about a tilt test. I know that I have POTS from covid. I loved this video and the information was very helpful. Best video I've seen that explained what's happening.
@savedbygrace33811 күн бұрын
@@MichelleGray-n1n These are the same symptoms that I experienced prior to realizing my symptoms were being caused by wireless radiation. Wireless radiation disrupts the autonomic nervous system in susceptible people. You may want to turn off all your wireless devices at bedtime so your body can rest and heal while you sleep.
@miamicatdull3 жыл бұрын
Interesting points
@rebecca-vii11 ай бұрын
Thank you all so much x
@dawnknight57273 жыл бұрын
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!
@withheart76622 жыл бұрын
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! 🙂
@angelagarner19043 жыл бұрын
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
@champ928683 жыл бұрын
Did symptoms improve
@angelagarner19043 жыл бұрын
@@champ92868 yes they did my mitral valve prolapse got better my anxiety got better and my orthostatic hypotension improved when I treated my thyroid
@champ928683 жыл бұрын
@@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
@angelagarner19043 жыл бұрын
@@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!
@champ928683 жыл бұрын
@@angelagarner1904 ty I appreciate the advice
@MissBlue8u Жыл бұрын
Thank you for mentioning SFSN!
@NoNo-zf6tz2 жыл бұрын
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.
@mikecook63023 жыл бұрын
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
@RUNDMC13 жыл бұрын
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.
@EllaSloman3 жыл бұрын
Learning to breathe properly and deeply has helped me to stay calm
@angelicabaez66003 жыл бұрын
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.
@marieparker38223 жыл бұрын
Great, great video. Great doctor!
@neverseenblue113 жыл бұрын
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.
@KatieBarboza2 жыл бұрын
Hey how are you doing now
@charliegordon22662 жыл бұрын
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 😭
@neverseenblue112 жыл бұрын
@@KatieBarboza much better. I just cant eat avocados or bananas. If I keep my diet low histamine I feel pretty good.
@RachaelStronger Жыл бұрын
Hi! How did you no you have hyperpots
@asdfjklasdfjkl19883 жыл бұрын
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
@lukaskidd46212 жыл бұрын
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.
@asdfjklasdfjkl19882 жыл бұрын
@@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.
@paulaproenca61682 жыл бұрын
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.
@jayswitzer98713 жыл бұрын
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.
@evilredbubble75573 жыл бұрын
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.
@davidm63833 жыл бұрын
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.
@RUNDMC13 жыл бұрын
I’m not sure I could get my head around what that would look like!
@bejul22 жыл бұрын
Thank you so much for this podcast! It is the best structured and informative video on Pots / Long Covid I have ever seen 🙏🏻🙏🏻🙏🏻
@richardmock31983 жыл бұрын
She described my sleeping patterns to a T 😁👍 my dreams are off the chain 🙃
@reggiedodson3353 Жыл бұрын
None of my specialist ever gave me nothing to help me I was just hoping that it will go away
@katybee25523 жыл бұрын
Good stuff thanks
@marycollins82152 жыл бұрын
Thank you
@balnazzar1233 жыл бұрын
i believe after 6 months of not being well i am in the state of dysautonomia , i have shortness of breath unexplained chest pain (heart checked with echocardio and ekg docs said heart is fine) lungs are fine but i am 7/24 irritated my sleep is fcked up , i have dizziness lightheadedness some days worse some days better , i have diarrhea in 2 days of the week have weird GI symptoms etc. what to do ?
@kp9683 жыл бұрын
Try amitriptyline low dose 5mg , this will help
@andrewstrakele68153 жыл бұрын
Dr. Blitshteyn suggests in this video that Dysautonomia may result from an Autoimmune response in the Brain. A Ketogenic Diet with Intermittent Fasting (great for weird GI issues).may be useful in reducing Brain Inflammation and correcting a dysfunctional Immune System. Vitamin D, Zinc, Vitamin A, and B Complex Vitamin supplementation may also be useful in optimizing the Immune System. A NO SUGAR Electrolyte added to drinking water and avoiding alcohol, coffee, soda pop, and fruit juice is also recommended.
@carmentorijacarpintero41303 жыл бұрын
Thanks a lot!!!!
@harryboby75633 жыл бұрын
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?
@RUNDMC13 жыл бұрын
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!
@harryboby75633 жыл бұрын
@@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😂
@MrEdkirby3 жыл бұрын
@@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.
@jeanalice47322 жыл бұрын
I was wondering the exact same thing.
@louisejackson19682 ай бұрын
@@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
@dianecarubia10993 жыл бұрын
standard medications??? i have been given NOTHING!!! for 20 years of me/cfs! my body systems are all over the place! i have lost my career and had a breakdown after my mother died as i wasn't able to help her. My mental health is horrendous and every single GP i have seen ( 15) have just looked at me and sent me packing with nothing to take except antidepressants! its disgusting and i wonder if it wasn't for my kids if i would have ended it all. IT is so devastating when you are not believed!
@IExpectedBSJustNotThisMuchBS3 жыл бұрын
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.
@tlebryk3 жыл бұрын
Maybe this helps??? Doesn't hurt to ask them - kzbin.info/www/bejne/gKjNe6Zrj61-gKs Maybe Hawthorn Berry and Ajuna Bark powders for heart palpitations? Other MCAS info - kzbin.info/www/bejne/qXqmdWOBo5ujiJY
@paulah.94152 жыл бұрын
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.
@amandafox293 жыл бұрын
I was diagnosed with neurocardiogenic syncope when I was 12, I wonder if that actually predisposed me for long COVID.
@Purplebluegreen23033 жыл бұрын
I got POTS after my first dose of the Pfizer vaccine. I am unsure whether to take the second dose and what that will do to my POTS. I am a mild case (for now) and have been able to continue a relatively normal life. Any advice?
@asdsad63 жыл бұрын
still with vaccine...vaccine stops the epidemy...dont turn imortal...I think that I had anafilatic reaction with vacina...but I will take 2nd shoot
@asdsad63 жыл бұрын
watch movies...do what they say in comments things.that may improve your health...find help...I try to avoid from psicotropics to not toxic my body
@asdsad63 жыл бұрын
and pfizer seems so soft...pregnants in brazil just take pfizer seems
@asdsad63 жыл бұрын
all people from world need imunize to stop the efect flick flack boomerang...
@patriciabryant88923 жыл бұрын
I have wondered if my POTS was post vaccine and never tested +ve & no natural antibodies to covid - has your POTs improved at all?
@amandafox293 жыл бұрын
Can dysautonomia cause low pulse ox/oxygen?
@emilianosintarias73372 жыл бұрын
The only thing that has really helped my LC brain fog and depression has been modifinal. But I am concerned that it may cause problems given the role of histamine in how it works, and that it stimulates the peripheral nerves. Anyone know about this?
@waitaminute20153 жыл бұрын
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.
@Jojoma4492 жыл бұрын
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