Jody's Story: Recovery from Postural Orthostatic Tachycardia Syndrome and Dystonia

Jody has been struggling with POTS, dystonia, chronic pain, and stroke-like events for decades. We were honored to help in her remarkable recovery.
Visit us at www.northwestfunctionalneurology.com to see how you can become your own success story

[@Jennagrays]

I literally just kept saying “yup” throughout the video because I have the same feelings and that no body understands ❤❤❤

[@timcepin3386]

I understand!

[@hannahbell165]

I feel your relief upon validation. I'm trying to heal my POTS and dysautonomia - I'm feeling really discouraged.

[@tomaszzawadzki1238]

I have every single symptom listed by Jody. My pulse rate when standing is 130, I have breathing problems (I can't take a full inhale like Jody couldn't), I have dizziness, vision problems, hearing problems, numbness in my fingers, stroke-like symptoms, pain in my spine, tense muscles all the time especially along my spine and neck, gastrointestinal problems, migraines, brain fog, memory problems... It all adds up. I perfectly understand Jody's emotional reaction. These symptoms take away the joy of life completely and the attitude of the doctors takes away any hope. Too bad I live in Poland and don't have such a place to go like Jody.

[@northwestfunctionalneurolo5250]

Tomasz, we have patients that come to see us from all over the world for exactly that reason. Unfortunately I don't believe there are any functional neurologists in Poland. That said, one of our former associate doctors is in Norway if that's easier, and he would likely be able to give you the help you need. You may want to contact Dr. Haakon Andresen: www.kvantumklinikken.no

[@rosek8393]

Yes I have this too...exhausting and debilitating...not livable..heartbreaking I live in Canada and no help ...still waiting

[@guncontrolisusingbothhands2331]

Tomasz, you have all the symptoms of an extremely low B12 level at the tissue level. When B12 gets low at the tissue level, it causes methylmalonic acid to elevate. When this happens the elevated M acid wreaks havoc on the nervous system and dissolves the myelin sheaths from the nerves. The elevated M acid also blocks enzymes in the urea cycle that convert ammonia to urea, which causes the ammonia to become high, and the elevated ammonia causes a host of problems too. The B12 can be low at the tissue level for 5 years before it shows low in the blood, so a serum B12 test is of little or no value. You need a methylmalonic acid blood test. This acid will always be elevated when B12 is low at the tissue level. Alot of people are getting POTS and all the things you mentioned following a Covid infection and alot of the time it is due to the infection causing a low B12. The body uses B12 to produce white blood cells to fight infections, and it becomes depleted because it's having to produce so many WBC's to fight the infection. You could also have a MTHFR defect. This defect reduces the active folate which is required for B12 to be absorbed. They sell methyl B12 if you have this problem. I have Polish ancestry and this MTHFR defect runs in my family. Good luck and God Bless.

[@northwestfunctionalneurolo5250]

@@guncontrolisusingbothhands2331That was a very cogent description of the mechanism behind subacute combined spinal cord degeneration, which can lead to a host of symptoms similar to POTS. This is usually one of the first things that is ruled out for POTS patients, in most cases at the primary care level. We assess all of our patients for these and other potential causes that may have been missed by their previous providers. The relevance of MTHFR polymorphisms tend to be overblown in the functional medicine community, as roughly 40% of the population carries the C67TT or A1298C mutation without the symptoms described above.

[@robertbrewer1152]

Quit eating all wheats and grains for a month.

[@beckybainbridge4682]

Thank you for sharing your story. I pray for the day to be able to tell mine. I've been through the exact same thing, working on 9+ yrs of getting little to no help. Its exhausting, ive lost so much of me while others have just belittled my health. Meeting with a specialist Feb 9th. 🤞

[@bminus23]

My wife went to Carolina Functional neurology here in NC. She is taking plenty of vitamins for her gut. 24 of her bacteria’s in her gut were out of sync after a TBI from a car accident. This video hits close to home as my wife has been sick for 8 years and 2 years of her body shutting down. Thank you for sharing this story and kudos to your neurology team!! GI Map test and Hbot is a life saver!!

[@rosek8393]

Where do u live? ...my large intestine not talking to the brain...so I have no b.m for days and feel very unwell...wonder if your wife has this...

[@rosek8393]

Bminus23...

[@TomEatsNC]

She your wife get better with help of the neurologist?

[@Mamaohhh04]

Has she improved?

[@smclemente19]

I have been experiencing for months what I think is POTS they did my tilt table & only found low BP but I still feel like it could be this. It happens to me nearly everyday. I am in CLT area & looking into CFNC.

[@KspeakZtruth]

I have POTS as well; I am currently writing a paper on this video for my college assignment. Thank you for sharing this with everyone who feels hopeless due to experiencing POTS.

[@Roxi78]

All the best for you Jody, I’m feeling with you and I’m so happy to hear you are getting better. Keep on the exercises and the faith ❤

[@shirleybose3143]

it takes courage to do what you have done with the video. You may be helping others who were or still are floundering in the dark. This is the positive power of the internet. I do so wish though that other folks suffering like could get the help like you.

[@Buschcat]

...thank you Jody. So glad you're doing better. This helped a lot.❤

[@mmansoor7010]

Hi Judy, excellent and very courageous video. I really appreciate that you're taking time to share with others to help out with these symptoms. May God help you get better and better. My son, who is 27 years old, has been going through similar issues for the last 2 to 3 years, and it got worse when he got Covid-19 in July this year since then he got worst. We are based in Toronto, Canada, and have been seeing all types of doctors but no relief. Please share the doctor's locations or information so we can contact them to get a consultation. 🙏 lots of prayers for you and your family who are supporting you through these tough times.

[@anastasiageorges]

You seem like a high empathic type. I relate to the breathing stuff. It’s, in my experience, sometimes related to entanglements with others who come into my field. It’s a big responsibility to have great sensitivity and we can bring our healing light and skills to our communities with understanding of our energetic being. You are courageous and authentic, and I appreciate you sharing all this. I validate you and these days, validate my own massive horrendous health struggles more and more…..invisible illness is strange and tough for others to consider and understand! We traverse so much on our journey’s towards wholeness and greatness. Thanks and blessings.

[@selfeffacingbarbie]

I have been dealing with chronic issues just like this for nearly a decade and many doctors completely disregarded me. I am finally getting some answers and it really does make a world of difference when someone finally, finally, FINALLY listens to you and wants to help

[@cindypoole9595]

I’m so thankful to have someone put into words what I go through. It’s hard to explain without feeling I’m just complaining or being a hypochondriac. 😢. I have been diagnosed with Autonomic Dysfunction, Parkinson’s & Dystonia. It ain’t fun! The hard part is I’ve yet to find a doctor that understands it. Thank you for being brave enough to tell your story. God Bless you. ❤

[@dcooper1535]

Pyridostigmine can treat dystonia, some forms of autonomic dysfunction, and the fatigue associated with Parkinson's. That medication is very cheap to buy since it's 75 years old, and it has a long track record for safety.

[@anniezion]

I can relate to this woman. Have herniated discs in my neck and spine and over mobility overall in body. Same issue with ear issues on the side where the neck is bad, having severe tinnitus, dizziness, constant pain, stiffness, fatigue and much more. To me, what strikes me is, you can see interviews with people having deadly deseases and they are often pretty put together (because when they got ill, they got help directly when seeking care, due to obvious reasons, they were not dismissed, they were offered a treatment, and they were believed when feeling very ill) This woman though, (and myself included) is so emotional, due to the history of being rejected by doctors when seeking help, knowing there is something very wrong, not able yo function, losing job, not able to enjoy life, but not being believed or simply dismissed or with a recipe of anxiety meds....The total relief when finally finding help, someone who actually knows what's going on. It's like pulling a cork from a bottle..the emotions explodes. I am not myself to the point were I have found the correct help, but YT has actually led me in a direction to understand, something no drs ever have been able to..I only wish this would have been possible 15 years ago..

[@Dulcimerist]

My POTS and digestive issues responded well to Mestinon (Pyridostigmine). This medication stimulates the vagus nerve and parasympathetic nervous system. Pyridostigmine was developed 75 years ago, making it inexpensive since it's off patent. It also has a long track record for safety. Guanfacine/Clonidine further treated my POTS, since I have the hyperadrenergic type of POTS.

[@robertbrewer1152]

I feel for you so much! I had post traumatic stress because of all the symptoms and sicknesses. Even when I began to heal I would just bawl at the extreme amount of relief I felt. The first time in my life not having extreme pots and CIRS. I’ve cried a lot over the years but today I’m the person I was supposed to be for 35 years of sickness. Still getting over all the pain and suffering but I’m so thankful everyday God led me to my health! Thanks for sharing your story.

[@tomsale5142]

How did yours start and how did you cure it pain for me upper body

[@robertbrewer1152]

@@tomsale5142 I quit eating all wheats and most grains oats rye barleys basically no grass foods. POTS is usually caused by an allergic reaction to an allergen or foreign invader to the body. I’m also allergic to some molds dust mites and dogs which cause me inflammation and muscle pains etc. I clean my sinuses out often even though it seemed like I didn’t have sinus issues that’s where a lot of the allergens get into your body so I use a Nettie pot almost everyday and helps tremendously with pain. A lot of the foods and products we consume are filled with toxic foods and chemicals. It all began with wheats for me it absolutely wrecks your gut health and that leads to inflammation and muscle pain for starters also if your gut is getting sugar and wheat which makes alcohol in your gut it ferments and your good much needed bacteria get overrun with bad bacteria that steal the vitamins and mineral your body needs even eating healthy you body cannot use it so your gut health starves you and have to go after it so even a healthy diet will seem like it’s not working unless you get your digestive system straightened out proper ph balance vitamin b1, b3, zinc, magnesium are usually deficient with muscle pain type issues like fibromyalgia which is just a name for muscle pain. Check out Dr. Osborn he speaks heavily on celiac disease or wheat intolerance which everyone has an intolerance. Try cutting out all wheat for awhile and see how you feel. I fasted for awhile because my gut was so messed up I couldn’t even eat anymore my stomach quit processing food and that’s how I learned I had a gut issue just from not eating anything for a week changed my life tremendously

[@tomsale5142]

@@robertbrewer1152 wonder ful I take ldn but isn't helping with pain Dr Sarah myhill recommends your approach she's in KZbin are you hypermobile the muscle pain is the problem 24/7 armpits blades area gets worse threw the day.i had pots 2006 ton2008 that ok now had haitus hernia op before fybromyalgia or myofacial pain started I must cut all gluten out I've vastly reduced but not totaly gone.how long have you had this thankyou

[@tomsale5142]

@@robertbrewer1152 I had Candida from 2006 to last year in my sinuses but now gone

[@tomsale5142]

@@robertbrewer1152 you fasted for a week?

[@coffeytowing8334]

Same heart issues. This is so frightening

[@melodyrobbins5759]

Trying to save and doing a go fund me to try to come see you guys. I’m so excited for that day and pray it comes soon.

[@SuperElitenub]

I have so much love for you.

[@Louisianagirl_1126]

I’m having a Tilt Table done tomorrow, I’m so hoping that my doctor will be able to give me some answers for the problems I have been experiencing for 20+ years. You talking about what you have been through is so parallel to what I’m going through it makes me so sad to know that someone else is suffering. 🙏🙏🙏🙏🙏🙏🙏

[@RobdeKlerk-qg6lc]

How was your table test

[@thetaijicentre9704]

Jody did u see the youtube by Dr Hauser connecting cervical instability and POTS and offers “Prolotherapy”. He commented re key sign of head cocked to one side affecting functioning that side. Thanks for being so brave relating yr story i can see you’ve been through a lot. You a a beautiful soul..

[@brendanshortt4103]

That’s great your almost fully recovered crossings my fingers for a

[@vinzhang1926]

My god . I can understand exactly how this lady felt . Please how can I get help ?

[@umamunipalle5890]

it feels like a stroke, heart attack, MS, ALS, GBS, and everything else under the sky.

[@_SB_69]

Yes, Yes it does. Truly terrifying to say the least.

[@user-mx5zz7ht1l]

All the best Jodie - glad to hear you’ve found something that helps. Just to clarify - is it just hyperbaric the treatment or neck treatment also?

[@allthingsmaloney5634]

I have stroke/MS like symptoms on my right side as well! All the same symptoms, vision loss, tingling on my face and limbs, palpitations, brain fog, SOB, etc.

[@AlianaRegos]

WOW. This is me. I have a had chronic neck pain for 4 years and have all the symptoms you have. Room spinning I have had my heart checked several times , populations pain ... Every day im worried I will dye. Who do I see in NZ?

[@user-oo6pg5fm8z]

I was diagnosed in 2017 finally after years of being told there is nothing wrong with me . I almost died. I literally had the same symptoms and heart issues from it .

[@maryboyce5129]

How do you get funding for something like this?? Abd what kind of program is it?? I did not hear you say.

[@SN2903]

I have POTS symptoms after COVID. I am a long hauler. 12.5 months still have the POTS symptoms and resting heart rate has gone up. Have cognitive issues/changes as well.

[@cynthialantzer5057]

Same with my daughter. After covid. She feels lost and frightened. She's going to school and is a medical assistant. She's afraid she won't be able to continue.

[@Mamaohhh04]

I got it after covid too…. I’ve developed Raynauds and neuropathy as well now and yet my POTS symptoms have calmed down now. It’s been about 14 months. I found it odd the other symptoms came later on, It made me scared to think am I going to just keep getting new illnesses as time goes on?

[@tomsale5142]

@@Mamaohhh04 TMS Dr schubiner

[@vanjacalantropo]

@Link86 are you better now? I’ve developed pots post Covid as well. I have difficulty breathing.

[@AP-dn7gc]

Me too. Long covid and pots. Went from perfectly healthy my whole life to extremely ill overnight for the past three years. Have not found something to heal myself

[@mikefranklin2765]

Listening to her story really struck a nerve. I hit my head in 2016 and ever since I have had 95% of her symptoms. Her life sounds so much like mine. I live in Spokane, WA. Is there someone in my area that follows your protocol you can recommend? If not do you see patients from out of state?

[@northwestfunctionalneurolo5250]

Mike, we see people from out of state (and indeed, all over the world) on a regular basis. We have helped quite a few people from the Spokane area. We had a PT that could manage follow up care for us in your area, unfortunately she moved to San Diego last year. We usually recommend a week-long NeuroRescue program for traveling patients. Call us at [phone] or email [e-mail] and we'll see what we can do to help.

[@ilovedogs938]

@@northwestfunctionalneurolo5250 I'm in London, UK. Is there a clinic here, or one you can recommend?

[@zakyvids6566]

You should see if hitting the head affected your neck sometimes hitting the head can make neck unstable and lead to pots syndrome from cervical instability and while this is not similar to your case it does show that people can develop pots from unstable spine and how once fixed pots can literally be gone Off-course this does not apply to all but a must see kzbin.info/www/bejne/r17ImGeqoZipY68

[@layliadoran7430]

Any recommendations for texas?

[@lunamai9909]

Does pots also cause tachycardia’s in the night???

[@Roxi78]

I have POTS since over two years now and one of the doctors told me; yes, it can because the autonomous nervous system is reacting excessively to every stimulus. I know something about that from my own experience. The whole palette of symptoms as well..

[@necroticpoison]

Pain, if it isn't lateral (though it was mentioned as being), especially ligament and joint pain, alongside POTS, is most often EDS (Ehlers Danlos Syndrome). I imagine neck / spine injuries could cause POTS combined with pain, but EDS can cause you to be more prone to those injuries, so EDS is still something to consider. Lateral pain, contraction, dropping, etc. could be caused by hemispherical brain hypoxia, which might/could maybe happen in EDS, but maybe it can happen in those injuries as well. I think most likely, people with lifelong POTS almost always have EDS, or at the least another born-with condition (micronutrient malabsorption, food allergy that has unique affects). Definitely look at EDS if you have POTS.

[@Mindfuljourneywithme111]

How did she get better?

[@SkylarBuckley]

I wish I could afford to see him. And work on my POTS I have all the same issues she has…

[@brendanshortt4103]

I know your pain 🧘🙏

[@leilamoon5879]

So how did she heal then

[@tellitlikeitis5028]

Were mycotoxins part of the testing and B1?

[@SpiritualDivine]

Described me to a T. I was diagnosed with POTS last year but its like finding a needle in a haystack trying to find a Doctor in my area that can help me :(

[@Clothed-with-His-Glory]

I’ve clicked on everything. How do I find a Dr. in Southern CA? Are you in Oregon?

[@northwestfunctionalneurolo5250]

We are. Find us at www.northwestfunctionalneurology.com

[@zeek4749]

Contact Azzolino chiropractor and neurology in San Francisco

[@maziesheppard8599]

​@@northwestfunctionalneurolo5250I have involuntary movement of all my limbs that seem reactive to emf and radio frequency radiation. This involuntary "lifting, levitating, circling mainly through my spinal cord feels like a gravitational pull that began almost two years ago after being in a house that is connected to a problem (continuous exploding) transformer that has exploded 6-7 times in less than a year, and is connected to the roof top of the house in which I begin experiencing electric shocks, suspicious tiny open skin cuts..after random shocks mainly while I'm the shower, or near metals and other "statically conductable" objects of every and any kind. I am suffering severely and was told by an electrician that the grounding of house is not sufficient, and panel/breaker box in this house is completely rusted and a fire hazard. I begin seeing a Neurologist/Chiropractor one month ago, that is treating my residuals from a 34 years ago Bell's palsy, by using an activator and exercises. He said he can start with those residuals and hope it will help the electric shocks, pain, what feels like a 24 hour current in my body, and this very disturbing and bizarre (severe) involuntary movement anomaly. Can we have a conversation and see what might be done at and through Northwest Functional? Thank you so much. Mazie Sheppard [e-mail] [phone]

[@lourdafinn6528]

I have pots, some days after a flare up I think I have had a mini stroke, my balance just goes, heart rate very erratic, breathing issues, chronic pain, think it's all to do with my spine as I have cervical spondylosis from my neck to lower spine, weather changes make it all worse, took years to get diagnosis, I avoid carbs, gluten, dairy, drink water, salt, heart tablet to keep it low, take probiotics, have weeks of ok and then suddenly flare ups, it is difficult to enjoy life, you are not sure if you are going to die, my blood pressure today was so low, I just am full of anxiety and depression, it is a disease that is not well understood and not many doctors know about it, been to them all they haven't a clue. Diet helps, but not being able to go for a walk is so disheartening, afraid to go shopping, being in your own. It is just a daily battle.

[@necroticpoison]

Have a look at EDS (Ehlers Danlos Syndrome) as it can cause spine problems. You may not have it, but it does make people more prone to complications, as well as injuries too, along anywhere where there are joints. It is quiet common for people with EDS to have triggers like you mentioned and almost all people with it have POTS. I'd also recommend seeing an exercise physiologist (they're similar to a physical therapist or a trainer) that specialises in POTS and start any exercises you can tolerate, especially gym muscle building, as increasing muscle mass in for example the calves or core helps return blood up to the top half of the body quiet a bit. An online exercise physiologist might be just as good (video call and getting a plan).

[@Jennagrays]

How did you cure it?? What was the steps? Did you ever do a tilt table test?

[@tellitlikeitis5028]

30000 dollars. Or go carnivore and replenish b vitamins and bind toxins . Mold exposure. Vaccines, dental metals.

[@cynthialantzer5057]

My daughter just got diagnosed with pots. It's a horrible feeling. She cries all throughout the day. She feels hopeless. I wish I could take it away from her.

[@guncontrolisusingbothhands2331]

Have her B12 and methylmalonic acid tested. A low B12 at the tissue level is a common cause of POTS. The only way to test the B12 tissue level is with a methylmalonic acid blood test. This acid will always be elevated when the tissue is low in B12. God Bless.

[@heatherfolts]

@@guncontrolisusingbothhands2331 can a person take B12 supplements to counter this if it be the issue of a low level B12 ?

[@aggarwal545]

Check out dr nathan keiser .

[@robertbrewer1152]

I had pots so bad until I quit eating all wheats since then I’ve learned there’s so far one bread I can tolerate but other then that anything with wheats makes me extremely emotional. Also I had chronic inflammatory response syndrome and GERD and ibs and new allergies popping up randomly Have to learn to detox her. When I get exposed to something and pots hits me I use a shot of apple cider vinegar mixed with a small glass of distilled water and then some cayanne pepper and turmeric it can take my pots symptoms away really quick. I used to react heavily to mold and dust but since learning to detox they hardly bother me anymore unless I don’t detox and clean my sinuses. I use a Nettie pot almost everyday and take things to stimulate mucus flow because they hold toxins near the brain and heart and can be extremely detrimental to your mental and physical health. The main issues is the bodies inability to expel those toxins that are affecting her. Start with all wheats even if not the mains culprit which very often is will help reduce the amount of histamines exposed to the blood and help mitigate effects of other toxins

[@necroticpoison]

@@heatherfolts Late reply but: Some people with insufficient B12 in the body is due to lack of absorption, no matter how much you take. There is a specific thing required called "intrinsic factor" or something, and that's what isn't working properly in that case. I don't know much else about it. Feel free to take B12 as is recommended on a package, for as long as you want, as any excess of it will just be removed from the body so you can't overdose it.

[@jackjones3657]

My question is how does one maintain their state of wellness after the treatment considering that we continue to daily be exposed to new variants of the virus that are more contagious and could set this whole vicious cycle back in motion!?

[@engjelllulaj3497]

Hello my name is engjell im from albania i have been diagnosed with pots, anxiety, i have all of those symptoms that this girl have since december 21 i wake up in the middle of the night my body was feeling a little shake and then i get pannic wake up my chest was numb i couldnt breathe my musscles contract barely couldnt want than i was sitting in the couch i had bed filling inside my body than my neg got numb and tham my head than i had like a shoc in my upper head and feelt like electricity released through my head i have done brain mri my brain was okay i fell tightnes in muscle every day i have fear and a lot of other things like when i walk my hed hearts like my head is blocked feeling dizzy all the time a lot of blood test and cardiological visits and today i went to a different cardiolog and he told me i had pots please can you help me ??

[@necroticpoison]

I would recommend looking up Ehlers Danlos Syndrome (EDS). EDS commonly causes POTS, I think especially a type where there's panic, anxiety and other panic symptoms, which is the hyper-adrenergic type of POTS.

[@z-manneversleeps900]

Ive lived this for 2 and a half years and basically had to diagnose myself because the docs just pushed pills for anxiety.

[@snwyn]

What did you do to better your condition 😢

[@z-manneversleeps900]

@@snwyn so far I've been going to a chiropractor and eating salt pills also wear compression socks and take a beta blocker. These are all microscopic fixes. When it's bad it's bad.

[@thomascrews8598]

Are you still severely symptomatic?

[@josefin5079]

"There is nothing wrong with you, here is a prescription, come back if it gets worse." Yep yep. And also: "it you, you are doing it you make yourself tense. It is GAD". I psychologist is trying to explain to me and also want me to read about what anxiety is. Because i dont seem to understand what it is, because I told here I dont feel anxious. And so on.

[@youness8288]

The chest pain make me depressed cause i have panic disorder and anxiety when i stand or move i get chest pain i don't know if it pots or something else

[@stuartmaclennan4432]

I suffer with health anxiety also and I get the chest pain on standing . It's like an annoying pressure that stretches put to cuffs of shoulders . Especially when exert

[@shadowwylde]

I feel the same. Having anxiety with these symptoms is a nightmare because my mind goes to the worst case scenario and I can’t control it.

[@necroticpoison]

Chest pain with POTS is very very common (it can happen during movement/standing too), especially left sided chest pain, but both sides happens often too. Have a look at Ehlers Danlos Syndrome as well, it can cause more frequent and more wide spread chest pain (even down to ribs), and is a common cause of POTS in the first place.

[@youness8288]

i get pots after covid @@necroticpoison

[@rosek8393]

Where is this place...I have the same problem..nerve problems..I don't have bm for days..my breathing is bad...so on

[@guncontrolisusingbothhands2331]

Rose, those are all symptoms of an extremely low B12 at the tissue level. The only way to test the tissue level of B12 is with a methylmalonic acid blood test. This acid will always be elevated when tissue B12 is low. Have you had these problems for very long?

[@sunnyd6019]

What is weird is I have something similar not sure POTS. When I stand my pulse goes from 74 to 107 but I have high blood pressure? So I am confused on POTS since it is mostly low pressure no? My issues are when I wake in the morning I get shaky and tremble, I feel dizzy/lightheaded, basically I feel intoxicated. This has been going on for 12 mos and I was normal prior. I am horrible when I get out of a car or in stores, feels like I cannot think I am so out of it feeling. My nose is blocked all day and I wake up a lot at night. Life is not fun.

[@titomurat1015]

Are you better now?

[@sunnyd6019]

@@titomurat1015 I am still dealing with this issue, some days are a little better but mostly the same. It is a weird issue for sure, no idea what is causing it.

[@kearly7800]

That sounds like hyper Pots. Where your HR and blood pressure go up when you stand/sit-up. You should have an electro-cardiologist check you out. It’s a form of Dysautonomia.

[@sunnyd6019]

@@kearly7800 I will have to mention this to my Dr. Looked it up and sure sounds similar to me less the cold/sweaty extremities. It is the weirdest thing, no clue where it came from, can this start from infection or something, I never had symptoms my entire life now wham, cheers.

[@rameshlumb4003]

​@@sunnyd6019do you take beta blocker now

[@adamhaaaq6113]

I had pots for 3 years now and I can’t even walk or stand for more than 5 minutes!! Everyday I feel like I will die! My heart rate hits 170-180 😔 I live alone and everyday feels like it’s my last day. Can someone help me ? I’m really on the edge. Do they treat people in London ?

[@trayon4reel]

Do some research on Doctors. Don’t give up.🫶🏽

[@tawney6569]

Look up a brain retraining program called DNRS. Type in on youtube sucess pots stories with DNRS

[@necroticpoison]

There's a small chance it may be caused by a condition called Ehlers Danlos Syndrome (EDS), which normally causes POTS from start of life, but for some is only noticeable at all at adulthood. With no EDS though, I would recommend looking up (KZbin) Dr. Maggie Yu, she helps plenty of people with POTS that have it come out of supposedly nowhere. Her video "The Real Cause of POTS and how to end it" might be really good.

[@stephencarlsbad]

How was she treated?

[@ghassenbohli4056]

I guess you have to pay

[@trishcovich1923]

Sorry but what exactly was the plan step by step. Chiropractor? Hyperbaric? Is this who you went to?

[@Whitewillow221]

Kinda frustrating

[@maryr8830]

What medication was given to her to get better?

[@northwestfunctionalneurolo5250]

Mary, our therapy for POTS involves rehabilitation of the involved neurological systems and pathways. Medication is not part of our treatment.

[@maryr8830]

@@northwestfunctionalneurolo5250 ok, i was diagnosed with dysautonomia and Pots . Been very ill by it and they prescribed me fludrocortisone. It doesnt seem to get better. 😭

[@northwestfunctionalneurolo5250]

@@maryr8830 we would be happy to take a look and see what we can do to help.

[@shanellecauchi6037]

Do you accept overseas patients

[@Whitewillow221]

She references ‘this is the starting point’ what?? I have Dysautonomia and POTS, what did you do it wasn’t shared clearly. ‘Stuff’…‘things taking place’…’intense program’, ‘take home treatment plan’ but no details and info. Ok hyperbaric chamber…

[@Dragolo99]

hi, do you have recommendations for clinics in switzerland? i'm really losing hope.

[@northwestfunctionalneurolo5250]

Hey there, unfortunately we don't know of anyone in Swizerland that can provide this treatment. There are a few clinics in Norway and around Amsterdam that might be able to help. Contact us and we will set up a consult to discuss options. We see people from Europe on a regular basis.

[@ryanh4707]

I.e - give us your money and we’ll tell you who in Europe can help you with your devastating health issues if you too give them your money.

[@rosek8393]

Need help...can't even get a neurologist ...

[@brendanshortt4103]

Similar outcome

[@GraveyardGirl1991]

Identical to me

[@trishastargirl]

There's a common thread with the women providing testimonials about their recovery from POTS. My takeaway is that it's my misfortune that I'm likely not going to be able to recover by receiving any kind of treatment like that which was received from "Kim" and "Jody". This isn't a "woe is me" post. I'm just being honest. I have no mom,cdad, aunt, uncle, sister, brother, child, husband or in person friend to provide even basic emotional support. No insurance anymore. I'm alone. I'm trying to not lose hope. I can only hope that mine is one of the very few cases where the symptoms just go away. Sadly, that seems to be my only hope.

[@ElizabethMillerTX]

Uh....I am going to acknowledge the elephant in the room and say that pain, POTS, cervical/spinal issues, poor propioception, dystonia, among other stuff, is very reminiscent of Hypermobile Ehlers Danlos. Js. When you can't connect the issues, think connective tissues. *rimshot*

[@northwestfunctionalneurolo5250]

Elizabeth, EDS is a common complicating factor in POTS, as is mast cell activation syndrome. All three are commonly seen in the same presentation. Dystonia, not so much.

[@zakyvids6566]

Exactly like this for example does not apply to all potsies but definitely to a subset kzbin.info/www/bejne/r17ImGeqoZipY68

[@necroticpoison]

@@northwestfunctionalneurolo5250 An injury coming from EDS I imagine may have the potential to cause something like dystonia, coming from a spine or surrounding injury (EDS making joint and ligament injuries much easier to occur). Point being that injuries and the level of severity can be caused by EDS. And small amounts of (if it can be considered dystonia) can seem to be caused by inflammation at a joint for small things like say trigger thumb, where a nerve goes through a highly inflamed area (or whatever the cause is in such a case). The original commenter's point still stands though; all of those symptoms (except maybe dystonia) are incredibly common in EDS and based on what the describer in the video talked about, EDS should be looked into, undoubtably, whether there's an explanation like a spinal injury or concussion or not, given that those can be caused by EDS. I may not be interpreting all of it correctly as I don't have context, but "[...] Brain trauma has been reported to be a triggering factor for the onset of symptoms in patients with EDS. [...]" a direct excerpt from "Underlying Ehlers-Danlos syndrome discovered during neuro-ophthalmic evaluation of concussion patients: a case series" by Abhishek Gami & Eric L. Singman, July 2019 published in the journal bmcophthalmol.biomedcentral.com/articles/10.1186/s12886-019-1174-2#:~:text=Brain%20trauma%20has%20been%20reported,documented%20%5B6%2C%207%5D. It is the responsibility of all Doctors of Medicine to properly evaluate all of their patients given the opportunity/time. EDS is a real, and most likely vastly under-diagnosed condition that has serious implication on the treatment and causal understanding of a patient's pathology.

[@northwestfunctionalneurolo5250]

@@necroticpoison that's a great comment. It is absolutely true that EDS can play a huge role in dysautonomia. We see it present in roughly 20% of our dysautonomia patients. It is one of the primary complicating factors in refractory dysautonomia along with MCAS and similar central inflammatory disorders. Of course we evaluate for all of these factors and incorporate their management into our treatment protocols. That said, EDS has nothing to do with dystonia. Dystonia is a movement disorder that develops as a consequence of impaired central neurological integration: pubmed.ncbi.nlm.nih.gov/27324878/

[@necroticpoison]

@@northwestfunctionalneurolo5250 Perhaps people with EDS are more likely to experience a TBI. It certainly seems that people with EDS experience long-lasting effects from concussions, and perhaps there is a frequency of cooccurrence between long-lasting concussive effects and TBI. TBI being implicated in the onset of cervical dystonia if I understand correctly. Also, if I remember correctly, the person in this video experienced multiple (3?) concussions, and perhaps people with EDS are more susceptible to receiving them in the first place. Given the link between certainly the longitudinal effects of concussions in people with EDS, and the presence of other symptoms, which, minus the dystonia if you want, scream EDS, it seems like there's a reasonable chance that it is EDS. From info that you said in the reply, you evaluate all contributing factors and take them into the treatment protocols, I just hope that EDS is spotted with 100% frequency for when it is the case, even when the susceptibilities inherent in it lead to presentations that might cast a shadow over it.

[@meltsinthecity5211]

How many £££ is this though?!

[@aggarwal545]

A lot . 1000$ a day for a week or maybe 2 . Depends on your condition

[@ajneedhams]

I would like to know how the chiropractor helped in this condition. I have compression on the vagal nerve. Does a chiropractor help with that or would the two places (nw functional) work together on a plan?

[@dan__________________]

But what is the treatment? Just a 20 minute video of a woman crying.

[@psychicandmediumniccielois4730]

I’m crying listening to this as I have had stroke like symptoms my body seizes up and I go stiff I can’t breathe. My abdomen seizes up and I can’t open my diaphragm to take breathe I want to heal and need answers I’m part of a pot’s clinic and get no help. I want to know I can get better ❤️‍🩹