Misdiagnosed: A Story of Resilience Through POTS

[@Nickelbippy]

Literally my worst nightmare. I went through the same thing on a smaller scale. Now I don't even want to go to the doctor unless I think it's something obvious.

[@saltforpots]

Medical PTSD is a real thing and SO hard to move past. It has been something I have struggled with as well. -Sara

[@patricianoel7782]

I have late stage multiple sclerosis.I am sick all the time.I got divorced. Life is hard. Ive been in assisted living for 2years. I hope many, many people hear your story. It is MOST IMPORTANT TO find a new life’s purpose to keep in your/my mind. Your story is much like my own. so much like my own. I try to show grace to myself and my family and friends. I just read a great book I’ll recommend, “Ikigai”, the Secret to a Happy Life” finding your purpose. ❤🎉Enjoy.

[@lucyannmcwilliams3889]

Thank YOU!! FOR SHARING. I AM 63 AND JUST DIAGNOSED. IT HAS BEEN AN INTENSE JOURNEY. I ALSO AM NOW DIVORCED. IN SICKNESS AND HEALTH. . HMM. . ALOT OF PEOPLE FORGET THOSE WORDS.

[@saltforpots]

Thank you for sharing this!! I will make sure to check that one out! We have some new content coming out this week for families too so make sure to send it to your family

[@janadoverbarlow8542]

Great video! I am so thrilled to have the program. I relate so much❤️ Thank you!

[@saltforpots]

Thank you so much for saying that! Happy you are enjoying it ❤

[@YellowElevenPhoto]

Your video just popped up for me and I have tears in my eyes watching this. I just got diagnosed with POTS less than a week ago by a naturopath who saw through what other doctors and cardiologists haven't. I had my first big flare up last year on November 19, 2023 after visiting Smith Rock on a solo trip, so even the visuals of this video were impactful. It was terrifying and I thought I was dying. I am watching this while laying in bed after having a huge blood panel this morning. I hope I can find relief like you.

[@YellowElevenPhoto]

I am also supposed to run my first 5k of my life on Thanksgiving. I started running a few months ago when doctors were telling me it was just anxiety and panic attacks. Your whole story is so similar to what I've experienced.

[@acer4237]

I’m glad he stuck in there with her, sounds like such a battle…wishing you the best recovery.

[@saltforpots]

Thank you!! He is one of the good ones. He has some new videos coming out soon for families so make sure to check back soon for them!

[@conniegarvie]

I was misdiagnosed for over 45 years! I'm 65 years old. I had my first huge POTS crisis five years ago, fainting, buzzing head, adrenaline surges, super high blood pressure and a heart rate of almost 200. At this moment, I'm hopefully finishing a bad flair. I ended up so weak that the paramedics had to lift me out of my bed to get me onto the stretcher. I HATE POTS! (Hyperadrenergic type)

[@debpaskall]

This is very close to my life story. I was born with EDS/MCAS and developed POTS in my 20s. Misdiagnosed until 4 years ago, after 50. Early arthritis as well. I have Hyperadrenergic POTS, and it's barely under control at the moment. I also beat long covid the first time, as well as Addison's and Hypothyroidism. I had covid again this xmas, and I haven't recovered at all, but I know how to get there. I do know the joy and passion and purpose you are talking about. Fly fishing/tying is my thing. My entire spine is in bad shape. Unfortunately I had to stop going to the gym because of undiagnosed POTS. I do water exercises and am mostly in remission from severe arthritis as well. Nutrition is vital. I don't absorb or metabolize anything properly. Plant based including pain/anxiety meds, lots and lots of vitamins, minerals and antioxidants and just keep moving. I'm allergic to pretty much everything but fresh air, so camping is my therapy. Thanks so much for this video. I'm going to share it with my family. They have been through hell as well, and I really thank you for the husband's perspective. I'm sure mine will, too. And my children are just as traumatized as I am from the insane years and years of me being misdiagnosed, going totally crazy at one point, almost dying many times, and 30 years of almost daily anaphylaxis migraines. And they are all hypermobile and don't want to even get checked out they are so scared. Good news is, I'm also in remission from bipolar disorder and depression. And at 55, I recently found out I have Autism. Both my sons have high functioning Autism, one with Aspergers like me. The allergy and nutritional deficiencies these diseases cause are what they think now is causing Autism. POTS and MCAS are on a rapid rise since Covid. That's why people are dropping dead like athletes and doctors. I know at least 5 people including my husband who developed POTS after Covid or vaccination. Thank you again. Take care.

[@ScoobyDoozy]

Hi Deb, firstly I’m sorry for all you’ve had to endure- your ongoing courage is formidable. The reason I’m commenting is a new gene mutation was IDd, which you may wish to test for. Obviously, there is a huge overlap of a constellation of disorders & symptoms in this ‘group’. Repeatedly we see anecdotally, clinically, & in research that there is essentially a Venn diagram overlapping with EDS, POTS, MCAS/MCAD, Autism, ADHD, OCD, paresis ( gut, bowel, and/or bladder), chronic pain, ‘chronic fatigue’, etc. It’s long been known that there is a gene/mutation somewhere which is responsible for this constellation of disorders & symptoms, although we’re yet to find it. I have no doubt that in the next 20 years, we will. What is difficult is that patients spend years or decades suffering, given multiple diagnoses (if they can even get diagnosis beyond ‘psychosomatic’) , & it’s all treated separate from one another. This is because the symptoms & diseases don’t all appear at once, but rather they unfold over the course of a persons lifetime. New symptoms, new problems, new tests, new treatments, new diagnosis, new specialty. Rinse & repeat. It does such a disservice to treat patients as though these are all separate entities. In my personal view, patients suffering with this group of disorders can only benefit from each ‘diagnosis/new illness’ being viewed as a different branch on the same tree. IMO, each separate diagnosis/illness is really more a different ‘symptom’/expression under the one overarching umbrella (let’s just call it the question mark gene lol). Anyway, all of this is to say that a few years ago, a mutation in the gene TPSAB1 was identified as causing an over production of alpha Tryptase, resulting in an elevated baseline Tryptase level. This mutation has now formally been clinically defined as Hereditary alpha Tryptasemia, an autosomal dominant genetic trait In the western/caucasion population, it’s estimated that 5% of the population has extra copies on the TPSAB1 gene, ergo they have HaT. Certainly, this tracks with the population frequency of those suffering with this constellation. of disorders (EDS/POTS/MCAS/Autism etc). Up to two thirds of those with HaT are asymptomatic. However, in those who are not asymptomatic, there is an evolving clinical picture. Due to the frequency of the mutation, understanding the correlating clinical picture is complicated. The earliest studies expressly documented the association of symptomatic HaT patients. Also frequently suffering from joint hypermobility, chronic pain & fatigue, ‘POTS’, autism, adhd, neuropsychiatric disorders etc. Later studies did not have the same findings. However, the most recent studies are showing that there does in fact appear to be a subset of patients with HaT who do suffer from this same constellation of different disorders. This is only anecdotal, but in my experience, there is absolutely a link. The genetic immunologists I’ve spoken to strongly feel that this is a disorder which, amongst symptomatic patients, frequently reveals a group of patients who have been previously diagnosed with MCAS/EDS/POTS etc. It’s very easy to test for. First, you need a baseline Tryptase test (although given your diagnosis of MCAS it’s safe to assume you’ve had repeated Tryptase testing). If it’s elevated, that is indication to proceed for testing for HaT. There’s a lot of info for patients online. For my own family, this has solved a puzzle which has unfolded over several generations of our family (and will continue to do so). There’s no real treatment, although there are therapies to explore for patients e.g suffering chronic severe anaphylaxis. Sorry for the essay, I just thought on the off chance it may help, then it’s worth it. Keep fighting the good fight ❤

[@lucyannmcwilliams3889]

​@@ScoobyDoozy THANK YOU FOR SHARING !! I REALLY APPRECIATE IT. . MY STORY IS 63 YRS OLD AND WE R FIGURING IT OUT. . HAD IT MY WHOLE LIFE. I DO HAVE A POSITITVE GENETIC TEST THAT GOES UNDER EDS. IT HAS BEEN INTENSE!! THANK YOU❤

[@rdallas81]

​@@ScoobyDoozyLyme disease and other vector born diseases should be checked.

[@saltforpots]

Thank you SO much for sharing this! You have some real resilience I can tell. We just posted a new video for families so make sure to send it to yours so they can check that one out too. Hope it helps them understand a bit more.

[@rhondarambeaut7461]

This is so inspiring and also gives hope to those who have this disease or whose loved ones have the disease. I had received my diagnosis of Parkinson’s when my niece found out she had POTS, I wish I had known what I know now and would have reached out to her and my brother and his wife (her parents) if just to have encouraged them as they navigated the difficult road to managing the disease. It is usually fear from lack of knowledge that keeps us from reaching out to people. I know that by having Parkinson’s now and experiencing it from friends and family. Thank you for sharing some private and very emotional truths to get this information out to those who desperately need it. God bless you.

[@saltforpots]

Thank you so much for your kind words! That is so true. So happy you saw this and I am sure they are thankful for your support in all this now!

[@alisonderrick1067]

❤

[@jessicapotter3518]

Love this! Thank you so much for all your videos and help. I'm 6 months into my worst flare and already putting it into remission.

[@saltforpots]

You are so welcome!! That is AMAZING! Keep up with that effort!

[@ANDREW345JJ2]

Undiagnosed for over 10 years. Without my family I’d either be dead or homeless.

[@blukatzen]

I got POTS after long haul cvd. Im always dizzy, going up and downstairs are frightening. Ive fallen down 7 flights of stairs already. I had a stroke in my sleep a week after watching my husband die from undiagnosed cancer. He died in 1 week. I think that paved the way too. It was the bottom layer and cvd and long haul was the frosting on the cake. The vaccines sealed it in. But i still think POTS is still another thing BEHIND the thing. Like the subject here, i wait to see doctors.

[@rdallas81]

Sorry to hear about your loss and suffering. Bless your heart and hand in there.❤❤❤❤❤❤❤

[@MissMoMoCita]

I'm crying watching this because I feel so defeated by POTS and I don't know what to do. I'm trying to exercise, walking, lifting, water and electrolytes etc etc. I'm not medicated and I truly don't want to be. I just want to HEAL myself. I'm desperate. This has ruined my life.

[@lucyannmcwilliams3889]

HAS YOUR DR. ORDERED YOU TO WORK WITH A VESTIBULAR THERAPIST OR CARDIOLOGIST. I HEAR YOU. I AM 63!! HAD IT MY WHOLE LIFE. DIAGNOSED RECENTLY. IT CAUSES DEPRESSION AS U WELL KNOW. MAYO. . CLEVELAND.. . STANFORD. . HAVE PROGRAM'S TO HELP YOU. I LEFT MY HOME. . MY FAMILY. . TO GET HELP. PLEASE FEEL FREE TO CONTACT ME. I FEEL YOUR PAIN😢.

[@janeshipley6993]

start googling - and please only on good, knowledgeable sites. after you’ve done good, smart research, then you can go onto sites like this one if you want to. sadly, this video shows a very unusual, very unrealistic solution to pots. to work on pots, you need to take very slow steps. you can make it better, but you probably won’t be climbing everest. look up the levine (lavine?) protocol, how much salt to take, how much water to drink each day. if you’re in bad shape right now, if you keep exercising, walking (and lifting?!), you’re making it so much harder to deal with pots. you need to start verrrry slowly and be verrrry easy on yourself. i actually started simply by laying in bed and wiggling my feet up and down slowly. if you’re not in terribly bad shape, you can do a recumbent bike (recumbent being the key). don’t push yourself! and if you’re near a good cardiologist or neurologist or pots specialist, you might make an appt. some young people truly do get over pots, but, for the rest of us, it is definitely possible to live a decent life - but you must stop pushing yourself, because that’s absolutely not making you any better - it’s keeping you from getting better. i wish you good luck. you can do this.

[@MissMoMoCita]

@@janeshipley6993 it's a short documentary... Obviously it's not going to show every little aspect of what she went through or how she got to where she did. And everyone is different. You can't compare you to her or to me or anyone. And if you don't try you'll never get any further than where you are.

[@pizzapartytime1826]

Starts slow. Walk 100 m. And so on.

[@Palestinian-s]

Check your B and D vitamin levels on cell levels. Not where the normal PCP will send your bloodwork.

[@maureenhartnett2953]

Good description of the POTS journey. I've had it for 30 years. It took 25 years before I got a confirmed diagnosis at Hopkins. My presentation isn't exactly common. I always pass the tilt table tests. But I was still quite ill and I still think some Doc should have recognized it. I now have over 45 distinct diagnoses. I must be a diagnosis magnet ;-) It's been an interesting ride. I've learned more than I ever wanted to know about medical things. I'm a trained mural painter so you know I wasn't prepared for this. And it started with the most severe pain of all..CRPS. But I pushed CRPS, fibromyalgia and erythromelalgia into remission. Now, since starting ivermectin for omicron 2 years ago, my POTS is just a whisper of what it was. I can't remember the last time I had brain fog. Since 1994 I've always done 30-45 min of recumbent exercise each day but no exercise took away my form of POTS. I am hindered by many other ortho conditions too including deformed feet. Also, since starting to drink chloride dioxide treated water when I had covid, my MCAS disappeared. There are cures out there. We can improve our health. Never stop trying to find solutions. I now have exocrine pancreatic insufficiency (Dx Feb.2024) and maybe I won't be able to totally reverse that since it killed my digestive enzyme production. But, I'm going to keep trying. Thanks for your video. I know it's going to be very helpful to many patients I'm sure. My POTS Doc at JHU is a physiatrist and he recommends exercise too.

[@saltforpots]

This is wonderful! Thank you for taking the time to share this! Never give up, always keep trying! Even 1% better adds up FAST over time.

[@debpaskall]

That hiking part was amazing ❤

[@saltforpots]

Thank you!!!! It was something else for sure.

[@trudy2686]

I walk 7000 steps a day. But With pots I can’t stand in one spot for 20 mins. without high heart rate. I also have heat intolerance. I don’t sleep well. As soon as I think I am better something knocks me down.

[@StockVisionHub]

Sure seems like my symptoms as well

[@clauthequeen]

You described what I went through for a year… now low bp and shortness of breath (after minimal physical exertion) are the remaining symptoms.😢

[@4EvaStrawberry]

These are my symptoms for the past 2 years

[@lindasplaylist100]

I am dealing with this now. God bless you it is awful. But starting to get help. Salt is life.

[@myshkanyt]

Have you looked into ashwagandha?!

[@vee9133]

Did you ever suffer from vertigo/dizziness? What are your struggles now?

[@saltforpots]

Yes I had major vertigo/dizziness. We are adding some new videos this week going over some updates!

[@nektariosandmagdalena4985]

So sad, 3 years being gaslit and laughed at by doctors. All these symptoms plus blood pressure spikes huge ones, body pain, widespread twitching, body pain that migrates, joint pain and ligament pain, migraine auras, bloating and stomach tightning, i used to have adrenaline surges huge increase in hr and high hr when standing until they put me on a beta blocker also get adrenaline dumps no change in heart rate but big increase in blood pressure with teeth chattering shivering and hot flashes, daughter has severe hEDS my dad has it and hes fine just found out i have it but no problems until after covid. I know i have some type of dysautonomia. I wish i was taken seriously.

[@janeshipley6993]

my comment ((to momocita, i think) was not allowed for some reason, but maybe it’ll come up later. basically, this is a lovely story, and i’m happy for this woman, but it’s a very unrealistic approach for most people with pots. pots needs very slow, minimal exercise - pushing yourself only makes you sicker. please do some good googling on appropriate sites, and then, if you still want to, you can come back to sites like this one.

[@saltforpots]

This is a short documentary and it is not possible to show my whole journey. I trained for TWO YEARS for this. It doesn't get much slower than that. It was very slow and very much geared to avoid PEM. I kept moving forward. Never anywhere in here did we say that it was a good idea to push to the point of a flare. That is actually the opposite of the program we created. Your words are very assuming and totally dismissive of my experience. As someone with a chronic illness you need to do better and not jump to assumptions and accusations. What is sad is you wrote this rather than just asked, which I am happy to answer. I hope you were just having a bad day to see this in such a negative light. Please feel free to google our website where it very much goes over all of this, as does our app.

[@conniegarvie]

Were are the documentaries about those of us whose POTS don't get better with exercise? We're are the stories of people like me, who exercise makes me worse, significantly?

[@victoriamelisa301]

Check for ME/CFS I have both and if I try to exercise I get a lot more worst

[@MarySmith-gd7bj]

Nov 5, 29018 I was misdiagnosed. Never had pneumonia or asthma. Dr told me I did and fave me chem antibiotic with a steroid. I almost died lost my job, income , friends and family never understood. No responsibility from Dr’s, six years of intense pain hard walking if can . Only wanted to give me anxiety drugs. I was what is called now “Floxied” poisoned from the drugs. No help from Drs been to more then seven

[@michellemarini5128]

I wonder how much of POTS is actually pharma damage. I'm in BIND and was "floxed" for what I believe now is a second time, by a fluoroquinolone antibiotic! I was diagnosed with POTS in 2002. I definitely can't get out in the heat and light, let alone train for a marathon. Lol. 😂

[@julielarson430]

I watched and listened with enthere's a has, Em, but you never gave any helpful.What to do for pots very disappointed😊

[@julielarson430]

. My comment was done verbally on Bluetooth while driving.There aren'typos you never gave any helpful ideas.What to do for pots?This is very disappointing.It's like listening to an information for an hour with no punch line

[@saltforpots]

We have an app and program for this as well as MANY other videos with things to do for POTS. This is not a self help video but my story and experience with remission. Our website is in the bio :)