The Truth About POTS: 27 Questions Answered!
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- Опубліковано 30 вер 2024
- #mysteryillness #POTS #functionalmedicine
Postural orthostatic tachycardia syndrome (POTS) is a disease that I commonly encounter every day, but it is often overlooked. In this video, I have answered the top 27 questions that patients, doctors, providers, and practitioners from all over the country are asking me.
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POTS hasn’t killed me, but it has stolen my life.
We are so sorry to hear this. It must be really challenging living with POTS. We hope that our videos and blog series are helpful in providing you valuable insights on how to navigate through this condition.
You have problems when lying down ?
It’s hell but I beat it.
@@comicbossone2411How?
@@CerenYh it mostly took 8 months. A combination. Some will help you with the symptoms, some will help you with the underlying cause depending what it is. I developed mine after severe covid pneumonia. First of all and I can’t stress this enough. Throughout the day when you are awake, sit up. It’s the simplest and perhaps most important way to recondition.
Then look at using the following. H1 blocker centrazine, high dose absorbing acid in water, iron, b vitamins, potassium, magnesium, eat smaller meals, avoid histamine in your food.
Other things you may wish to consider, walking and recumbent reconditioning. I believe sitting instead of lying down during the day and gentle walking on flat surfaces, then stairs with antihistamines (just for a few months), together with ascorbic acid will get you back on your feet. It takes time but you can get it all back, you can beat it, it is not a god, it is not impossible but you are going to have to dig down deep to defeat it. If you do this you WILL win!
Good luck to you.
I had a tick on my neck when I was a kid. Probably completely unrelated. I fainted the first time when I was 11 from a hot bath. I fainted 4 other times throughout my life and so I learned to sit down when I felt light headed. I'd literally just stop dead in my tracks and sit until it passed. I lost mobility in my elbow joints about 10 years ago for no apparent reason, it eventually returned. Nausea is something I've always lived with, headaches, joint aches and memory is something I've struggled with for as long as I can remember 😉 as a child I was diagnosed with anxiety, asthma and plain old "bad nerves" I get tremors, im jerky in movement and extremely clumsy. I'm really hard on myself so the fatigue was just me being lazy and I'd just push myself to go harder. I was a runner. 5 miles a day and ate very healthy, then I opened my own business and could no longer find time for healthy meals and exercise. I've been to the ER via ambulance 5 times from November-January and had countless test by my pcp who's just referred me to a cardiologist. Rapid heart rate and low blood pressure. I've had all these symptoms my whole life and I can't believe there is an actual name for what I may have and I'm not just lazy, clumsy and forgetful.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
i have tachycardia when i have sinusitis 130-150 resting I dont know why I dont feel my heart beating, it doesnt hurt but my heart beat rises by 30-50 and then stabilizes. my eyes feel tired and I feel fatigue for a few days and then my heart rate returns to normal. Anybody else experiencing this after covid, like is the most superficial sinus from saharan dust and the heart rate is out of whack?
Any specifc advice to help POTS from Long Covid?
All of these so called mystery illnesses have causes. My so called mystery illnesses are caused by yrs of having undiagnosed mold and tick diseases that caused my immune system to become compromised, I have bad nuerological problems, pots dysautonomia, autonomic nervous system problems, central nervous system problems and all dismissed by this conventional medical system.
How did you find out please? About the mold and tick bite?
@@christinagrant3252 conventional medicine did nothing to help. I went to a holistic naturopath dr. They ran specialized testing, the testing they used found the tick disease and mold toxins in my urine. There are tests that do work and find these illnesses, but they cost money. The first test that found the tick disease was the western blot and the elisa was negative but the western blot picked 3 bands up, then yrs later the naturopath dr found everything else. Buy treatments for these are difficult and confusing.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
There has to be an underlying cause of POTS. My 16 year old daughter is currently dealing with this. She had a covid type virus 3 months ago. She is now passing out 2-3 times per day, nausea, headaches, fatigue, etc. She was totally healthy before she caught the virus
I started with POTS about 13 years ago. After trying hundreds of different things only Vitamin B complement ando electrolytes have been helpful. I no longer drink plain water. I hope this can help your daughter. BTW. I never got COVID.
@@margaritasaborio4475hi, I was just diagnosed with POTS. Just wondering which brand of electrolytes have been working for you? And vitamin B ?
@@margaritasaborio4475hi, how are you now, do you have POTS yet? And how much your heart rate? Plus answer
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
Has she had the covid vaccine? This is another area to investigate. Many heart issues are being found, especially in young people.
We're finally targeting my GI issues. That kidney action was interesting. I haven't thought much about it except how very very active my kidneys like to be. My comorbidity is ME/CFS, likely triggered by mono. We have a LOT of long COVID suffers in our support group. There's so much overlap.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
Oh my word - I would love to be able to come see you. I’m a long Covid hot mess.
I've been living with POTS for 41 years. If POTS isn't secondary or related to Covid the signs & symptoms can be relapsing or chronic.
POTS doesn't necessarily cause a low BP. Hyperadrenergic POTS is typically associated with an elevated BP and can be worsened by supplementing with salt.
Like for helping me to understand the “pseudo seizures” that I experience with my POTS.
I have diabetes and was placed in the hospital for over a month with Covid and Pneumonia. After, I started to develop symptoms of POTS. It is now undeniable. I can barely stand for a minute and have been going through this for almost two years. No one seems to know enough about it. I'm suffering and can't work and no one understands. I'm also having a hard time with my foot healing from a diabetic ulcer. Imagine wearing a medical cast and boot for over a year in combination with POTS … I'm always off balance.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
POTS absolutely sucks. I have it along with hEDS, fibromyalgia and other things. Some days, I can't stand or even sit. I have to lie down.
A cardiologist can diagnose POTS. My GI doctor suggested it to me. I'd been trying for at least 8 years to get a diagnosis. I suspected POTS and mentioned it to a few doctors. They didn't think it was that.
Well, when my GI doctor mentioned POTS, that was the validation I needed to keep pursuing a diagnosis.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
Great that he did. Personally, as a POTS patient with non-EDS type of hypermobility and life-long gastroparesis symptoms (now including regular/practically daily vomiting etc.), can I tell you to really pay attention to your digestive capability. I have to lay down, if I eat. I have to avoid carbohydrates and eat small meals in volume high in calories unless I want to lay in bed all day. Please do the same, should you find it helps you. Too many EDS & POTS patients who end up on feeding tubes and die too young.
There is still hope! It may be linked to long covid!!
For some people, yes. But mine is because of my hEDS. Everything I have is because of that. That is a congenital connective tissue disorder.
@@Kathyahedrick3 Yes, it's linked to long-COVID just like it's linked to CFS/ME. It should put more funds into research, but they are a long-way from even understanding what causes it let alone curing it.
Please also consider: Studies linking POTS with the Gardasil vaccine, many lawsuits pending. C-19 vaccine needs to be investigated for adverse reactions and increase in POTS Dx..
Your comment about POTS and chest pains is not correct in my personal experience.
I have hyper-mobility (not EDS but adrenergic type of POTS). I started having symptoms basically probably since birth, but already in my twenties I started having chest pains. This was in the 1990s and the doctors were already half-ready to lock me up in an asylum for 'white coat anxiety'. Kidding, yet true enough in the sense that I never mentioned to any of them that I was having pain on the left side of my chest when carrying groceries or books from the library or in other occasions of longer exhaustion causing scenarios. I never panicked about it, because I never died and they went away as soon as the strain stopped. In 1995 the doctors told me that my autonomic system had gone haywire but there was no such diagnosis as POTS in their tool box at that time. The pain is still there in such situations, mind you.
I'm in my 50s now and my heart has right-sided abnormalities as evidenced by ultrasound examinations. It's not genetic, because it had developed between 2005 and 2018, i.e. between my two heart ultras. There is no other reason for them than POTS, given the only real strain to my heart has been excessive heart rate (the latest being 100 bpm in a 24h Holter - I'm an academic, so not really doing strenuous exercise daily including standing up). In 2009 my condition got a lot worse and I became unable to work full-time (most likely related to the autoimmune developments at that point).
I am glad you mentioned the comorbidities with POTS, because in the UA-cam world there have been a couple people with EDS and POTS that have died in their 20s. I have non-EDS hypermobility (no skin or digit symptoms) and mild mast cell activation syndrome (only a couple 'attacks'), but I would like doctors to understand that EDS patients are really sick if they get POTS too. I'm in my 50s, but these people with EDS who get complete gastroparesis do not survive for long. I take care of intermitten gastroparesis with herbs that tax my liver (senna), but these EDS patients with POTS are in dire need of actual medical help. It may be because of over-medication, but please do not make them guinnea pigs.
Thank you for sharing your experience and giving a larger context to how symptoms can show up based on the complexities of one's health. We appreciate the insight, and wish you the best of outcomes.
Thanks for commenting. Being an academic I understand how difficult clinically valid research into POTS is given the multiple factors influencing the body's performance. Hence the importance of patient interviews/qualitative research for developing strands of quantitative research into the syndrome.
hello, what are your thoughts regarding regular iv fluids for pots? 3 to 4L per week.... 1L administered over 4hrs. thank you..
Hi there, getting IV fluids for POTS two to four liters per week is a sign that the person has a very unstable vasculature requiring large-grade fluids to help maintain their blood pressure. It's more of a marker of the degree of severity of their condition as far as getting these fluids long-term can have some issues but those people have bigger problems with actually just living because those POTS are so severe. So it becomes a risk-benefit thing. What's the best risk-benefit as determined by them or with their specialist usually it's determined that for them to function or have better activities of daily living IV fluids are the next thing to add on. But usually, that is one of the things done after multiple other therapies and things have been tried.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
I've watched A LOT of videos, this is the best, thank you ❤️
Thanks
Lyme 😔
Thank you for this video! You helped fill in some of the gaps in my POTS understanding, such as why to lie on an incline. Very helpful details!
You are welcome! We are so glad you found this video helpful.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
Pots patients have a life quality similar to COPD and chronic heart failure - worse than HIV and cancer, according to studies. Mine is long covid based, so I do hope it will go away (took 2 years to get diagnosed). If it doesn’t, I will probably go to Switzerland within the next 2-5 years. I am only in my early thirties - I have no interest in living another 50-60 years with no quality of life.
Got this from taking the covid vaccines
I developed POTS after I had Covid 12/24. I developed a sinus infection after that, I still have it. In March I caught pneumonia and the POTS got really bad after that. Any amount of strenuous work exhausts me, and I feel like I can't catch my breath. Also, when I get up from sitting or lying down, I get lightheaded, and it takes a while to catch my breath. I have been to a pulmonologist, and they put me on Advair. My breathing is better and less labored. My primary care Dr. diagnosed me with long covid. I need help getting over this condition. I also have psoriasis and was taking Skyrizi until I caught Covid.
Thank you for sharing your experience. It's not an easy condition. I invite you to check out our blog that has over 200 articles on how to improve chronic conditions. Simply type in the keyword your looking for (in your case "POTS" or "long covid" in the search bar and read the articles that come up: richmondfunctionalmedicine.com/blog/ I wish you luck on your journey toward a healthier life.
Can Pots swell your hands ?
Yes, some types of dysautonomia. People with third space or have fluid build up in their hands and legs.
I got it after covid pneumonia. I beat it!
That's amazing to hear! 💪 It's incredible how resilient the human body can be. If there's one thing that you learned and you would like to share, what would that be?
@@RIFMAdmin thank you. I wish I’d seen your vids some time ago. Too many things to narrow down, it’s a combination. People will tell you not to do this or that in terms of effort, they will say “stay within yourself”. They are well meaning but I would still be afflicted to this day if I’d adopted the same attitude.
I was mentally very strong before it happened. However, anyone who has had pots at its worse will tell you it takes the joy out of every aspect of life. It took 8 months and over that time I forged s new mental toughness, I did not give up and I used my 12 year old son for motivation as I’m all he has.
I am from a research background. Which proved to be both a blessing and a curse. Early on I found very little reason to be optimism with positive outcomes seemingly rare. However, I initially found one case and that was the moment I knew it was possible and if something is possible I knew I could do it.
As I studied further it became apparent there was probably an underlying cause. Given my symptoms and history I landed on MCAS and started stripping food and treating accordingly. Aware that it would take time as cell regeneration/recycling took place over months. So I knew it would be at least 6 months before I noticed any appreciable changes.
As well as stripping histamine from my diet I used s H1 blocker, B-complex vitamins, iron and water filled with vit c. The latter used as scaffolding to directly help the blood vessels on a daily basis.
Together with very gradual but consistent and persistent reconditioning and the love and willing on of my little boy I managed to make it back, at first to functionality which took 8 months (record territory I was told) to where I am now 2 and a half years later which is pretty normal. Now I have added potassium and magnesium rich food to my diet and I have no fear. It truly is a debilitating curse, it felt like being allergic to gravity. Imagine that, every second of every day. I felt totally pathetic and broken, now I am reforged. Videos like this, discussion, success stories and a positive outlook together with the details outlined above are the pathway forward. There is hope, there is a pathway and you must make it your mission to find it. I knew what it was and had regained functionality before meeting my cardiologist and having him diagnose it. I was very lucky, I only told him the symptoms and he got it in one. There had been an influx of patients post covid so he was familiar.
Thanks again for the work you put into making these videos, you will never know how much hope it brings the people searching for them and for answers.
How?
@@543Molly hi Molly/Cherie, I’m sorry if you or a loved one is struggling with this. Nutrition and reconditioning is key. First of all look at the possible underlying causes as very often the underlying cause is treatable while they say pots isn’t. I’m my case and at my time a lot of people were finding they had an underlying illness as well called MCAS. Basically histamine was a problem for me. I stripped histamine from my diet for a few weeks then started adding back. It takes 6 months before you start seeing improvement. In addition to that I took a H1 blocker, it’s an over the counter antihistamine. Then specifically for the pots took High dose vitamin c, plus regular doses of b vitamins and iron. If you incorporate gentle and regular walking after you start. At the 8 month market I was functional again and no longer bed ridden. Improvement started at the five month mark but I was only properly functional at 8 months. 3 years 3 years on I’d say I’m back to normal and I’ve noticed by taking a small but daily dose of magnesium and taking potassium through my diet (I can now eat bananas again) I feel like I did pre-illness.
When I first worked out what it was all I came across was story after story saying how impossible it was to beat it but I found one article on a case showing someone had beaten it and that was enough for me to research it.
By the time my cardiologist appointment came I knew what it was but kept my mouth shut and just went through the symptoms. He confirmed it was pots. He offered me all sorts of meds but that was at the 6 month market and I knew I could do it without. Don’t lose hope. It can feel like your life is over but it isn’t. There’s a way back.
❤ no you don't beat it. It goes dormant..its what happened with me ..I thought it was gone and I got stressed for awhile and some of it came back.
Thank you! 😊
You're welcome! Thank you for taking the time to watch the video.
great examples...
If you've had issues for 15 years - is it possible to recover any health....or only to maintain the current level of health if disease is stabilized?
Your body was made to heal and self-repair. There is always hope and you can always get better. It's just finding a path forward and implementing it and not getting discouraged. If someone's been sick for a long time they also tend to have a trauma response, which needs to be addressed as well.
Herbal products from Dr Oyalo have been a staple in my routine now. They help me feel more in control of my POTS and live a more normal life.”
What do you use to treat the SIBO?
I typically use FC-Cidal and Dysbiocide by biotics research. This is a great combination of herbal wise, that works for many patients. Sometimes a little extra oregano can be added in for extra support.
I’m afraid I’m going to die
@@lisamccullough5150 It would be best to see a healthcare provider or meet with a Lyme literate doctor or someone who's familiar with it to get treatment.
@@lisamccullough5150Cape searching so the best method for you. I am 74 years old and I am finally getting out of the long Covid symptoms I have had for over three years. I’m saying a prayer for you.
Where in Texas? Where did the person get treatment ?
There was actually a pilot study showing treatment. I don't recall which university the pilot study was on. The issue is that unless you're in a study like that at a university, you're not going to get IV IgG but you can do it by mouth. Here's the link to the article just in case you want to check it out casereports.bmj.com/content/2018/bcr-2017-221405.short
Long covid created this. Thank u
Incredibly helpful thank you
POTS isn't it's own disorder. It's DISGUSTING how medical "professionals" dismiss patients by naming a group of symptoms as a "condition" 🙄
Did y'all know arthritis translates to joint inflammation? Psoriasis translates to itchy condition😂 If diagnosed in plain english the patient would have FAR too many questions 😡
Low vagal tone from chronic stress coupled with forward head posture interfering with the carotid baroreceptors in the neck are two BIG factors in the widespread phenomenon outside of people with connective tissue disorders
Yet another Doctor more concerned with a mythological god than his profession. Huge red flags.