My POTS story // How I was diagnosed & underlying conditions

[@adamball6886]

I remember that tilt-table test. I passed out so quick. Not being in control of your body is the worst. The common misconception is that the symptoms are only experience upon standing which isn’t the case. Everything is a trigger for it; dehydration, getting too hot, caffeine, alcohol, nicotine, sugar, not enough sleep, too much sleep, eating too many carbs, it never seems to end! This is a terrible condition and I don’t wish it on my worst enemy.

[@nikhilsharma6676]

I had tilt table test today It came out to be negative but I have been observing my heart rate has been shooting till 130 and coming back down to 120 115 110 105 but mostly between 120 to 130 140 resting heart rate was between 95 and 105 I didn’t faint bp was always normal so technician gave the diagnose as negative as my heart beat was fluctuating or maybe he was not aware of POTS and only testing for orthostatic hypotension I want to understand Do I have pots or not I am from India 🇮🇳 I never had covid or viral infection But I am having headache and dizziness from 20 days is it POTS ?

[@muchancie]

@@nikhilsharma6676 there’s so many Drs who misdiagnose POTS & they don’t understand what it is, I wrote down on paper all my symptoms and gave it to my Dr and even before he did anything he said “” SAID YOU HAVE POTS”” but I have other things wrong also so I’m fighting 3 different diseases that are incurable but POTS is keeping Me from having a life, I Pray you find the right Dr. Don’t just take one Drs Diagnosis, and Please be careful of Passing out, it’s totally uncontrollable 😔🙏🏼

[@ashmitasharma719]

​@@nikhilsharma6676 hey did you find out?? I have been having all these symptoms of autonomic nervous system overdrive and I have gone crazy trying to find out what is it and finally heard about POTS . I have gone to n number of doctors and all my bloodwork, echo ecg has come normal..

[@loveconquersall143]

So true!!! 👍👌😭

[@loveconquersall143]

​@@nikhilsharma6676it probably is! All testing is too unreliable. I've even read medical articles saying it 😞

[@rosemariealvarado9902]

I've struggled with POTS m almost my entire life since I was 10. Saturday I will be 71. Not 17. 71. Diet, supplements, chiropractic have made the difference for me

[@milksandwich8560]

What kind of diets and supplements are you taking?

[@HealingWithRachael]

Glad that you found something that helps.

[@ad_9251]

@@milksandwich8560 WoW Wow

[@mustaphabakhti]

Wow, u made it till 71 wow proud of you ❤️❤️❤️❤️❤️

[@basicbarks]

@@user-tb2jy9lu3d our story is almost the same!!! Have you had any progress, I would like to talk to you if you've had Any help!!!

[@shelbyrios2111]

I never thought having pots would feel so isolating but I love hearing other people’s stories with it and know I’m not the only one experiencing/struggling with this. ♥️♥️

[@HealingWithRachael]

You most definitely aren’t alone Shelby!

[@roadcyclingchannel1529]

@@HealingWithRachael Rachel there is a lot of info on POTS from KZbin channels like York Cardiology, Dr Eric Berg, Dr Sten Ekberg reasoning that many heart conditions like SVT abd Afib palpitations are due to too much exercise as the left Ventricle can become enlarged especially from endurance exercise and so damage the corect distance the electrical pathways in the Sinus node in the heart functions. Also diet : caffeine, junk foods and MSG in the takeout foods and camnned soup etc is a big one with many people saying it induces there palpitations. Calcium is put in so many processed foods and its in all milk, dairy and breads, Calcium cause inbalance in our electrolytes. Potasium, thiamine (B1) and magnesium help a lot, Magnesium is a naturtal Calcium channel blocker which calms the heart down.

[@yaroubthayer-752]

Horrible condition. What’s more horrible is I had to diagnose myself and conduct my own research, while incompetent cardiologists screech at me “it’s all in your head” 🤡

[@yaroubthayer-752]

@DroopyWorm SSRIs are their answer to everything, I swear you can replace them with vending machines to the same effect. “I can’t climb the stairs anymore” and their response “you’re a healthy young man, it’s just anxiety” fvcking hell.

[@yaroubthayer-752]

@DroopyWorm Precisely. Haha I fancy ranting about docs every once and a while. Thanks for the ear mate, and best of luck.

[@Dulcimerist]

The same thing happened to me as well. SSRI medications made me sick, and those tend to aggravate dysautonomia. Hoping you can get better doctors. Thankfully I have better doctors now, and I'm able to choose the POTS medications I've wanted to try. Have they tried you on actual POTS medications yet; such as Ivabradine, Mestinon, Guanfacine, Clonidine, or a beta blocker? It sometimes takes time to find what works best for each patient, since we're all unique individuals.

[@yaroubthayer-752]

@@Dulcimerist Yeah I’m on a minuscule daily dose of Bisoprolol since August and it completely does away with the tachycardia, tbh even though I wasn’t prescribed the Bisoprolol for POTS I keep with it for now... it’s a bit complicated - as this things tends to be.

[@Dulcimerist]

@Bad nostalgia Hoping your appointment goes well. The problem with POTS is that it fools doctors into thinking it's anxiety, because POTS involves the sympathetic nervous system ("fight or flight" response) which is the same autonomic function that's involved in anxiety and panic attacks. To differentiate the two, be very articulate in your POTS symptom description. You need to state that your heart rate increases and your symptoms are aggravated simply by standing up or by other postural changes, in the absence of any stimuli that would trigger a "fight or flight" response. Your previous doctors have been destructive to your mental health, since not believing someone's real medical issues and withholding proper medical care meets the criteria for causing PTSD. The irony is that seeing a therapist and getting diagnosed with PTSD could actually put those doctors' medical licenses in jeopardy, due to potential malpractice and medical neglect. If your doctors continue to be dismissive, negligently not screening you for POTS and misdiagnosing it as anxiety, ask them to back up their claims by trying you on low dose nightly Guanfacine. It's commonly prescribed off-label to treat anxiety, and it's also a common treatment option for POTS. Guanfacine signals the body not to dump so much norepinephrine and adrenaline into circulation, which then calms the "fight or flight" panic and anxiety response and reducing tachycardia. It also has far fewer side effects and risk of dependence/addiction than typical anxiety medications - so much less risk, that it's even prescribed to pediatric patients to treat anxiety and insomnia.

[@ryleejulessixx1355]

I haven’t gotten diagnosed with POTS yet, but i’ve been in and out of the hospital these past 2 weeks with rapid heart rate and panic attacks for no known reason, i’ve missed 2 weeks of school and im a sophomore. I live in MN and we have been trying to go to Mayo Clinic. This is absolutely hell, thank you for sharing your story.

[@TheDeeba2]

Same! How are you doing now?

[@carmella88]

Same

[@abbyfellows1716]

I just came back from 12 hours in the emergency room. I have a traumatic brain injury, and after multiple fainting spells and always being dizzy, they told me they think I have POTS. I have to go to a cardiologist this Tuesday to get a heart monitor to see. I'm horrified. The first thing I did was jump on KZbin to see if anyone had ever made a video on it. Thank you so much for this

[@HealingWithRachael]

I'm so sorry to hear that!! I hope they can figure out everything for you soon and that you won't have long-term effects! You're not alone!

[@clairbby1123]

my pcp thinks i have pots but my cardiologist was quite dismissive - i’ve been to the ER, to my pcp multiple times, and i’ve worn a heart monitor for two weeks. i’d love to hear an update on how you’re doing !

[@southerncalifornia3155]

Abby what did the cardiologist told you?

[@strengthwithinme6795]

I got POTS after a severe concussion. My Functional Neurologist was able to assess the functioning of my brain stem and remapped my brain stem to function more properly, in the weeklong treatment. He suspected I had genetic issues with B12, folate and L-glutathione. I need special forms of these. My vitamin D was low. I need Omega 3 fish oil and special forms of Magnesium. I work with a naturopath certified in Functional medicine. I no longer have POTS. My heart rate is normal. neurologicwellnessinstitute.com/dysautonomia/

[@Cindyo227]

This is amazing info. Thank you for sharing.

[@leilabradney2529]

I've been struggling with POTS since I was a child, around maybe 5 or 6. I only got formally diagnosed on Friday (5-13-22). I'm only 15, but my family has been desperately trying to get me diagnosed for years. I would go to doctors sick nearly every month, and doctors would check my heart rate, and usually I was lying down or sitting up, but my BPM would be around 120 every single time. They would only ask "Is this normal for her?" and then move on. Usually they were like "She's got a cold." or something of the like. Dizziness, headaches, nausea, fainting, tunnel vision, confusion, shakiness, etc. It was so frustrating in gym because I would constantly have to stop and apologize to my spotter/teammates and sit down constantly. I would almost always black out when standing up, in worst cases I'd pass out, but I'd be okay. I got put on Propranolol back in November of 2021, I'd take 1 in the morning and 1 at night, but eventually I noticed it just didn't help at all. The highest my heart has ever gone, and usually this happens when I pass out, was 202BPM, but the only time I was able to catch it being that high, was when I went to the nurse in school because I nearly passed out in gym. That was the final push for my parents to make me an appointment to get tested for POTS, or at least SOMETHING to figure out why I'm like this. When I went to the appointment, I got diagnosed, but the doctor was blaming me the entire time. "She needs to take better care of herself, she'll be fine, why isn't she drinking enough water?" but, I take care of myself the best I can. I drink 3 liters of water a day when I can, I shower, I sleep fine, I take care of myself. It was horrible the way she talked to me, it was the first time I ever met her. The doctors don't know why I have POTS yet, it could be trauma, underlying conditions, but we don't know yet. I could've just inherited it. But, that's basically my story with it. Not even my entire experience, but that's mine. :')

[@muchancie]

Bless Your Heart There are some Drs that needs to be Educated on Bedside manner Plus what POTS is, there’s no reason why People gets POTS & it’s not curable, I hope You find Your Answers & soon, I’ve had POTS for at least 2 yrs and it keeps getting worse I’m Beta Blocker & it helps some but not enough, I’m to sensitive to Medication, I got POTS when I was 75 years old so it’s not just for younger People anyone can get it! 😔😪

[@igo7434]

I noticed something is that, when I don’t drink enough water, I get POTs symptoms. So I have to drink about 2 cups of water on my bed before getting up. That makes it go away. I now aim to drink about 3 litres of water a day. I also noticed is that, after eating food, my POTs gets really worse to the point I can’t even stand up and even when sat down my heart beats very fast and loud pounding. So I have to eat small amounts every 15 minutes. That does trick. Another thing I noticed is that, when I first wake up in morning, that’s when the POTs are worse but after getting up and moving about, then everything seems fine. I can sit and get up without a problem. So yeah for me hydration, exercise and eating small meals helps. I really hope doctors finds the cause of it and cure too. Sending good wishes to all who are suffering from all illnesses. 🎉❤

[@thelostknightt2959]

Damn that's what I've been experiencing as well

[@rashaetaylor6914]

Thank you for making this video! My 13 year old daughter has been battling POTS for 7 months now. It took months and many doctors to figure out that she has POTS. She has been slowly getting worse, headaches and stomach aches. She is such fighter and wants to get better sooner than later. Love your truth and advice. You are awesome girl!!

[@HealingWithRachael]

Thank you Rashae! I'm really sorry to hear your daughter is struggling so much, this journey is difficult. Wishing you all the best with finding her help and relief ❤️

[@Dulcimerist]

Sorry she's experiencing this. Does she happen to have hyperflexible joints? That was the case with me, and it turned out that my POTS and digestive issues were being caused by hypermobile type Ehlers Danlos syndrome. Hoping you can get in to see a specialist to determine the underlying cause of the POTS and the other issues.

[@Infinitelyglamorous]

im fighting pots as well

[@HealingWithRachael]

thank you so much!! i’m sorry you have it as well!!

[@lftori6103]

Same here! Hope your blessed with a clear mind and LOTS of energy! :)

[@lftori6103]

For me it's hard enough just sitting in the sun

[@lftori6103]

I had to quit softball

[@snowschnee7121]

Me too.. and i keep passingout so bad :( I pray for both of you🙏💗 it feels awful to have pots..

[@echastee]

I might have POTS. I finally talked to a Dr about it and I'm going to see a cardiologist. I don't even know how long I can stand anymore. I have started laying down a lot. I'm so tired. It all started when I was about your age. I used to be more active. I would run on the treadmill for fun and I liked to play volleyball and ride my bike a lot. But my heart started racing a lot. I felt like I couldn't do that stuff anymore. And now I barely can clean my apartment. Luckily I'm on disability for something else. There's no way I could work a job. I have to keep sitting down. It seems worse than I remember it being before. I'm 29 now. And I can hardly do anything now. I don't ever wanna do anything. I'm depressed. I'm so sorry you are dealing with this. I hope you were able to get back to some of your old activities.

[@HealingWithRachael]

I'm so sorry to hear that. Wishing you the best & hope you find healing!

[@madilynpiper4138]

I am glad that Mayo Clinic was a better experience for you, although I have a very different story from them. They put me into a program for other people with pots and actually took me off most my medication including my beta blocker. They continued to tell me that it was all in my head and that I needed to retrain my brain. It was the worst experience of my whole life. I am so proud of you, I have almost all the same things as you! You’re amazing.

[@alk.9981]

Hi, Rachel! After listening to your story, I definitely have to say that my heart goes out to you. I imagine that it must be absolutely heartbreaking on the inside, not being able to perform activities you love, to climb, run, and exercise at your full capacity. Not to mention how it impacts your regular day-to-day capabilities, for this to suddenly impact you in your youth feels really unfair. However, you seem to be handling all of this incredibly well, which is absolutely commendable; at a relatively similar age you certainly seem way more active than I am, because even for me, learning that running, going to the gym and exercising would suddenly put my health at risk would probably incredibly break me down and demoralize me, so I'm saying kudos to you for handling all of this well, and even educating and sharing your story with people! I really do hope more people get to know about this condition, I actually haven't heard about it until now, just so you know, so thank you for informing me about POTS. And I just saw the other chronic illnesses you listed as having, and I have to say that you really are durable and staunch going through life with all of this, you're really championing your way through, if I may say so, with no cliches intended. I really hope keeping up with the cost of all of this wasn't and/or won't be a big issue in your life. However, what really matters the most, and you seem to be of that opinion as well, is that you're happy in life, that's something that everyone stresses, and I definitely can't help but agree. Seeing how you said that climbing used to be your everyday norm, and made you happy before, I really hope that you found, or that you'll find in the future, something that's there to occupy your mind and make you happy on a daily basis. I honestly wish you the best in life. Even from one brief video like this, it's easy to notice that you're almost certainly an amazing person to talk to in real life, and I hope you're happy with people that surround you in your everyday life, and that you don't have issues expressing what's on your mind to people around you, because you've shown here that you can be a great advocate and a spokesperson for your cause. And yes, feel free to talk about anything that sets your mind and heart free, even if it doesn't get a lot of attention, I hope it means something to you, even if at most a handful of folks care to properly listen to you and respond. At no point should your physical limitations impact your emotional or mental status, you certainly don't deserve that. There's times during the day when a person needs to let things out, even though there's not necessarily someone around to listen to them. So I know I try my best to meet and listen to people no matter where they're from, because I personally know that listening can not just make someone's day, but save someone's life. So yeah, I hope you're happy in life, I really do. I hope that normal life activities aren't and won't be a problem for you in the future, but no matter how unfortunate some things may become, I always admire people with positive outlooks on life and I believe that's the way to go. It may be too risky for me to say that I wish for you to compete in climbing again, so most importantly I'll wish you health and well-being. It's was definitely a pleasure getting to know you, your story, your anecdotes this way. So I hope you make the most out of your life because you definitely have great potential to change some people's lives. Keep fighting, keep expressing yourself, and keep educating!

[@HealingWithRachael]

This is so thoughtful of you to say. Thank you so much 💙

[@tanzieluv]

I was just diagnosed with POH/Orthostatic Hypertension which the cardiologist who was present during my tilt table test explained that since both my heart rate and blood pressure shoot up positionally, I have orthostatic hypertension. Staying hydrated, staying cool and taking time getting up and down are helpful for me... my neuro thinks I also have SIH spontaneous intracranial hypotension (spontaneous csf leaks) caused by my EDS and thinks it caused my Chiari so she is looking over my past scans... sending you positive vibes!! Finding fb groups is also a wonderful tool, that has helped and given me much needed knowledge! 💜🦓💜

[@Dulcimerist]

I have orthostatic hypotension from my hypermobile type Ehlers Danlos syndrome as well. Have they tried you on Mestinon to treat it? drsanjayguptacardiologist.com/blog/mestinon-a-glimmer-of-hope-for-pots-patients/ My doctor put me on it, since it also helps with the digestive issues that EDS often causes it, and it's been working really well. Hoping that your doctors can get things figured out, and can find good treatment options for you!

[@emilywarren3053]

I have a tilt table test and a cardiologist appointment next week. My symptoms seem like hyper PoTS and I had a subclinical EDS diagnosis in 2006, so might be HSD?

[@Dulcimerist]

@@emilywarren3053 The diagnostic criteria for hEDS and classifications for the 13 types of EDS were completely overhauled in 2017, so it might be good to be re-evaluated for hypermobile type EDS (hEDS) under the current diagnostic criteria. If you don't fit the new criteria, you might meet the criteria for HSD.

[@emilywarren3053]

@@Dulcimerist Wow, thank you so much for that information

[@thebiglebowski4309]

I totally get you. I used to hit the gym at least 5 days a week. Have trained since I was a kid. I got covid twice, only 8 weeks apart. The second time, I just never got well again. 9 months later, I was lucky to get referred to a great exercise Physiologist who actually has POTS and he knew right away after looking at me. Did the Malmo tests etc and boom. Now on the journey to understand and hopefully get well. Thanks for sharing.

[@coffeesweatersbooks9340]

I related to this video so much!! My heart goes out to you!! Nobody except ppl who have gone through it know just how horribly terrifying and painful and experience it can be! (Especially with many doctors blaming real symptoms on anxiety, when u waited months to see them.) and the spending months at a time stuck in bed staring at one spot on the wall because you head is so foggy and you have 0 energy. It’s like getting stuck with the flu but add ✨fainting✨! I really wish there was more awareness out there for us, we deserve more research! It’s a lonely experience.. u lose friends and years of your life! And the little things you did without thought have now become daunting... I found it made me more thankful for all the little things in life... and though I don’t know if or when I’ll be better I’ll continue to put it in all the work I can and live my life to MY fullest in my current condition! Sending love and hugs 🤗 💕!

[@hannabuehler4072]

I know this is an older video but thank you for making it! i have been experiencing increased dizziness, heart palps, blurred vision, digestive issues, shaking, etc. for the past few years and juts assumed this was all normal! i finally made an appt. with my doc to talk about it (after she had dismissed my dizziness the past few visits and juts said it was my anxiety or that i needed more salt). but i know that since i haven't been able to hike or run as well or as much as i used to due to these symptoms, so something is up! they definitely fluctuate daily, some days are worse than others (which makes me think its not POTs but ill still ask haha). ill send good vibes to all you warriors out there and thank you again Rachel for putting yourself out there to educate those like me!

[@Dulcimerist]

Definitely get a second opinion. Too often doctors will quickly dismiss issues as anxiety when it isn't. It sounds as though you might have the hyperadrenergic form of POTS, which is an overactive sympathetic nervous system ("fight or flight" response) and too much norepinephrine and adrenaline in circulation. This interferes with the parasympathetic nervous system, which is in charge of sleep and digestion. Medications which reduce the amount of norepinephrine in circulation, such as Clonidine or Guanfacine taken at night, can help if this is the case. Both of those are often also prescribed off-label to treat anxiety, so they'd even help if your doctor happens to be correct. Definitely get things checked out, as your issues could be something else. Sometimes a rheumatologist can help get to the bottom of things like you describe.

[@matthaines8136]

I think this happened to me I had sinus tachycardia and high blood pressure and exercise intolerance hot feet etc brushed off as anxiety got in a wreck shortly after my legs started feeling like jelly shortly after when standing might not be pots though cause I don't think I sustain the 30 bpm increase

[@whitheeres86]

I am readjusting to new levels of illness this year & also studying at all all over again. Thank you for sharing your story with us! God bless!

[@HealingWithRachael]

Best of luck to you as well, Whitney! :)

[@muchancie]

You are the first one who really hit Pots on the nail, I’ve had POTS for 2 years I’m in Bed now 24/7, I can’t stand alone and when I was able to still stand I’d stand about 10 minutes and would Black out, it’s a terrible disease, I have done so much Research as You have & Actually your the only one who actually has a bad Case of POTS too, I’m hoping it will go away just like I got it, I was really fortunate I wrote down exactly how I was feeling and My Dr. Knew immediately that I had POTS, l also take Beta Blocker but I’m to sensitive to medication that I’m on the lowest dose it helps a little bit but not enough to be up on my own, My Prayers are with You that You will get through this too 😔

[@s4r4b34r]

Hey I just found your blog post and have recently discovered I have POTS-i also did a recent video on POTS. So we live very close to each other and I just wanted to reach out to you! Having POTS sucks and I am struggling so badly right now! Based on your blog posts it seems you're able to stay positive! 🌷🌷

[@HealingWithRachael]

Thank you so much 💚 Sending love and spoons to you!

[@pallavimehta9445]

Suffering from dysautonomia for the last 6 years. Its so difficult to live like this 😭

[@mariec4275]

Pallavi Mehta it’s heartbreaking to live like this.

[@biaanibeu4471]

Yes it is.

[@2wheelAdv]

Thank you for sharing, finding the right doctor is always a challenge.

[@HealingWithRachael]

It certainly is!

[@debkiehm7634]

OK I did get your reply to me thank you very much. You did mention that your ferritin was low but you didn’t say what the number was I also think that if you can get your ferritin level up to at least 70 I think u would feel a lot better. I use the Gaia plant force liquid iron as it does not have any negative side effects. Take it with vitamin C every other day. Also I really love the liquid vitamins by Mary Ruth’s. The multivitamin formula during the day and the multi-minerals at night. Sending love and light wishing you all the best on your healing journey. Xxoo

[@karlamalcolm9249]

Rachael thank you so much, this was super helpful. Thanks for being such a great researcher and advocate- super inspiring!!

[@HealingWithRachael]

Glad it was helpful!

[@adelate6362]

Before 3 days doctors diagnosed me a POTS i don't know what it is but i have the same symptoms just like you before this i was reallyy really really active but after i started to be so "lazy" i had headache and lot of syncopes you know..sry for my english im from Croatia so. And also good luck ❤GET WELL SOON!😜

[@HealingWithRachael]

So sorry to hear you've been struggling with POTS, too 💙Hoping you can find the help you need!!

[@adelate6362]

Thank you ❤

[@fanidurdov7057]

Hej! Vidim da si iz Hrvatske. I ja sam isto. Imam isti problem, dijagnosticiran mi je prije godinu dana, ali se borim odavno. Mislila sam da sam sama u hrv. Mogu li te kontaktirat privatno?

[@coachsteve9467]

My 24 year old daughter also has POTS... She has had it since the age of 12.... we are praying 🙏 that she will outgrow it... she can hardly function on a daily basis

[@avam2903]

i have pots as well! I have it at a very young age compared to most so it been a challenge- thank you for sharing your story!! i hope you're feeling better or have had better luck managing symptoms and things since you posted this video!

[@HealingWithRachael]

Thank you so much, Ava! Best of luck with everything!

[@avam2903]

Thank you! You too!!

[@unicornadrian1358]

Thank you for your videos! For 28 years doctors have repeatedly told me that the neck pain and the clunking and grinding in my neck were nothing to worry about. Sleep apnea diagnosis and I ask if neck might be issue. “No” Reflux? “Don’t be silly, couldn’t possibly be your neck” Arrhythmias that only occurred when I was really relaxed, never from exertion. “Nope can’t be your neck.” Waking up with burning pain in my hands. “Nope can’t be your neck, must be carpal tunnel “ Constant fatigue. “No, can’t be your neck, check B12 levels” they were fine btw. Then 6 days ago I learned about the existence of CCI/AAI. Mind blown.

[@fashionbecomesher1665]

Hi, I'm in the proces of being tested for pots, so I was watching some videos and reading comments. I saw your comment about the grinding and cluncking in your neck. I was wondering if you could tell me more about that? I can make the weirdest noises with my neck, like a squigy / grinding sound. It's so hard to explain, especially in a foreign language. I have never thought that wasnt supposed to be like that. I'm going to google CCI/AAL now. Your comment is exactly why I always read comments on KZbin videos! Thank you!

[@unicornadrian1358]

Fashion Becomes Her I’m no expert and I’m working on a diagnosis at the moment. The most disturbing sound I get is like when you pull the leg off a roast chicken, a sort of grinding tearing sound that I hear through my skull. Other sounds are grinding sounds as I turn my head or a noticeable clunk if I lay my head over to the side.

[@katejackson6502]

This sounds very familiar I will be looking into this! Thank you!

[@unicornadrian1358]

Update. Neurosurgeon ordered MRI and xrays. Took no measurements and barely looked at MRI. Did a reflex test of major reflex points, about half didn’t respond at all and she just said stuff like great, good etc as if they responded normally. Then she got me to hold arms and legs out and tried to push them. When they didn’t move she proudly announced that my motor function was fine, despite me explaining to her that my legs give out while walking sometimes, I usually catch myself before I face plant. I also explained that I’ve had things fall from hands without realising until I here something hit the floor beside me. The discs down to C5 showed as black spaces and the next couple were only thin white lines until T2 onwards where they were quite visible. She mentioned the deterioration of the discs and both arthritis and wear of the facet joints. When I asked her what could be done, she just said it’s not compressing your spinal cord and I can’t see any loss of function. When I asked her what could be done about the severe pain in my neck and head, she told me to exercise it as much as possible and “manage” the pain as best I could. She concluded by saying that if there is a noticeable loss of motor function then I could get in touch again. So all in all, incredibly fucking disappointing.

[@Dulcimerist]

@@unicornadrian1358 Hoping you can get a second opinion. Sorry you had to experience that. You don't happen to have hyperflexible joints, or a history of joint subluxations or dislocations, do you?

[@KoolAidDinkyTV]

Pots has to be the worst disease, im a boy im going to be 17 almost and i been suffering from it for 11 months. Its hard to study and focus in the school work.It just makes me sad feeling well for 15 years and unexpectedly this happens and ruins your life. I hope they get a cure by 2030

[@HealingWithRachael]

I am sorry to hear that you’re struggling so much-I hope you find relief soon.

[@KoolAidDinkyTV]

Rachael Elizabeth thank you

[@Dulcimerist]

I'm a male and my POTS started at an early age, too. Mine is due to being born with hypermobile type Ehlers Danlos syndrome. Which medications have they tried with you? There are several treatments available. Beta blockers, Clonidine, Guanfacine, Ivabradine, and Mestinon are some popular POTS medications. My POTS was cured with Mestinon and a small nightly dose of Clonidine.

[@coffeesweatersbooks9340]

We’re in a similar boat 🚣‍♀️.. I’m 17 yr old girl.. I’ve been out of school for a year I can’t focus on any amount of school work and can barely get out of bed most days.. 😔 I was actually put into a special physical therapy program for POTS recovery.. praying that it will work! I just want my life back! Seriously I go from what seemed like unlimited energy, to barely making it up a flight of stairs.. and needing help to make breakfast..

[@Dulcimerist]

@@coffeesweatersbooks9340 Sorry you're going through that. Age 17 is when my POTS and Ehlers Danlos issues knocked me out of school as well. See if you can find some compression calf sleeves like marathon runners wear, as those can help a bit in preventing blood pooling in the legs and reducing POTS symptoms. Do you happen to have joints that are more flexible than average? If so, have they screened you for hypermobile type Ehlers Danlos syndrome or Hypermobility Spectrum Disorder? I went through a physical therapy program for POTS as well. It helped a bit, but I still needed POTS medication in order to treat it well enough to not impact my life.

[@NMW80]

Omg my mum and I have these symptoms! Even my daughter has had symptoms sometimes but not often thank god. My nan also did too and she ended up so bad in the end she couldn’t walk at all. My mum is getting so bad now just like my nan did. I’m so worried, I get dizzy when I stand up and feel like I’m going to faint at times. I’m treating it naturally which is helping a lot but not a cure by all means. I have low blood pressure and so does mum and my daughter. I think nan did too or maybe it was high in the end due to her kidneys but I can’t remember. I am looking into this now, thank god I seen your video. I have noticed anything that boosts your immune system helps with my dizzy spells etc. I honestly think this started from a nasty infection that I caught off mum. My daughter and I caught this infection off mum when she coughed all Over us a while ago and we started getting the same symptoms that my nan and mum had for years which I now know was due to my poor nan catching this crap off my mother. My mother is always sick and used to cough all the time and literally has spread her germs to us all. She just coughed all over us pre much. She is now much better and doesn’t cough as much as she is on vitamin d etc now which has improved her health a heck of a lot. I am also on vitamin d and other supps and thyroid and parathyroidism meds due to a bad case of mono which has left me chronically fatigued and unwell all the time. I have now got pains all over on n off, fluid retention is also a symptom of this nasty infection from my mum. It’s nasty it also causes chronic post nasal drip and thick nasty phlegmy throat. But thank god I have found thjnsv to help keep it under control. It’s all about boosting the immune system and keeping infections at bay. I have shocking brain fog and find it so hard to email/text etc these days too. Anyway I’m glad I seen your vids as I had no idea what this pots was so now I know I will ask the GP but they are always useless where I live and do nothing to help me get better. I hope I can find a better doctor here in Victoria Australia Cos I am sick of my local negligent doctors I have seen. It makes you just want to give up when you get no where’. God bless. Will watch some more of your vids soon and sub. I will message you some of my tips to help my symptoms if you like. It may help you too who knows 😊

[@michaelkirkham8950]

Thank you for sharing your story!

[@HealingWithRachael]

:)

[@SynthesisSerenade]

Thanks for sharing your story! 💕

[@starvolcano2549]

Mono causes Pots as does Lyme,Covid etc… Ive never been diagnosed but have been suffering for 20 + yrs! I so relate to your story especially since I too was super fit and loved the outdoors. I started drinking pedialyte instead of salt tablets and more water. L-lysine helps me tremendously maybe because mono is herpes related. It helps me with my headaches and the hypertension. There is so much that triggers it. 🙏🏼♥️

[@sarahorme9415]

So, I've probably had POTS for years, but it wasn't bad enough for us to earnestly search for an answer until July of this year, when I started having severe dyspnea whenever I moved, especially when I was standing, but often when I was just shifting positions on the couch. Naturally, since shortness of breath is kind of an unspecific symptom, and could be indicative of some dangerous things, like a heart problem, we started frantically looking for an answer. I did an X-ray, and it showed I had pneumonia, but after two weeks of anti-biotics, I felt the same. We did another X-ray, and it came back perfectly normal. We did more tests, and they all came back normal, including an EKG we did. Finally my doctor sent me to a Cardiologist, who diagnosed me with POTS. I was relieved, because I had a diagnosis only a few months after my shortness of breath, and I could start working on treatment. I went to a physical therapist, followed the training regimen, took it easy, and I was making progress. However, about a month ago, I started having a low-grade fever every day, multiple times a day, seemingly at random. I went to a doctor who wasn't my normal doctor, and he told me it was probably a virus, or an infection, and ordered a few tests to prove it (including a COVID test) and they all came back normal. We waited another week, then went back to my regular doctor and told him all my symptoms (In addition to my fever, my joint and muscle pain has increased in intensity and frequency) and he ordered a bunch more tests, and sent to me an infectious disease specialist, who told me he doubted that it was an infectious disease, based on my situation, and the duration of my symptoms. I don't know what I have, but I can tell you what it's not: It's not the Coronavirus, it's not the flu, it's not mono, it's not tuberculosis, it's not cancer, it's not any sort of heart problems, liver problems, kidney problems, thyroid problems, or lung problems. All the inflammation markers came back negative. I'm going to see a rheumatologist at some point to investigate some type of arthritis. Honestly, I think it might be an underlying autoimmune disorder that could be causing my POTS, but I'm not a doctor, so... I don't know. It's tricky. I'm feeling a little confused, and I don't have a ton of control over what's happening. Has anyone had similar experiences? Any ideas for what to look into?

[@Dulcimerist]

Sorry you're going through this. Did you see a rheumatologist? Autoimmune diseases such as Lupus, Sjogren's, Hashimoto's, and others could cause issues. Do you happen to have hyperflexible joints? If so, that could indicate a collagen disorder like one of the 13 types of Ehlers Danlos syndrome. Definitely get a second opinion from a rheumatologist, as they can be good at solving mysteries like this. Have they tried you on any POTS medications, to see if you respond well to anything?

[@sarahorme9415]

@@Dulcimerist My Rheumatologist doesn't think that I have any kind of autoimmune disease, and she also doesn't think I have EDS (despite my suspicious number of symptoms) and for the time being, I'm gonna believe her. She diagnosed me with something called AMPS, or Amplified Musculo-Skeletal Pain Syndrome, which is kind of like Juvenile Fibromyalgia I guess? She didn't explain it very clearly, and every website I look at says something different. The fevers eventually went away, but lately I've been having them every once in a while, coinciding with me becoming allergic to almost everything, and a return of the undiagnosed stomach issues I've had since I was six, that kind of come and go. *mystified shrug* I'm currently seeing a GI doc, and I see an allergist in a week.

[@Dulcimerist]

@@sarahorme9415 Definitely get a second opinion, preferably from a geneticist. My rheumatologists have all been behind the times on EDS, especially since the criteria and classifications were all updated in 2017. It gets confusing since there are 13 different types of EDS. Wishing I had gotten a second opinion when my first rheumatologist erroneously ruled out EDS in 1996, as the delayed diagnosis until 2013 caused a lot of issues for me and delayed proper medical treatment. AMPS is the newest "fad diagnosis" and probably doesn't have well-defined criteria and classification yet, which is why sources talking about it are so varied. It might turn into one of those "cop out" diagnoses where doctors can just throw patients into that label, so they don't have to deal with learning about connective tissue disorders like EDS, Loeys-Dietz, Marfan, Stickler, Lupus, Sjogren, Hashimoto, etc. Have they ruled out Mast Cell Activation Syndrome (MCAS) as the cause of your odd allergic reactions to things? That's super common with EDS, and can also pop up by itself or with other health conditions.

[@sarahorme9415]

@@Dulcimerist I've been hesitant to try and see a geneticist, since I don't quite fit the criteria for any of the 13 types. I am hypermobile, and had frequent (minor) injuries as a kid, but no dislocations. Also, my chronic pain definitely follows a more Fibromyalgia -like pattern, with lots of nerve pain along with muscle and joint pain. I also don't have any family history of EDS (though I know that that's not something that all people with EDS have) I do suspect MCAS as a potential cause for my explosion of allergies, and my allergy history, however, to my understanding, it's kind of hard to diagnose, especially since I haven't had any kind of anaphylactic attack.

[@Dulcimerist]

@@sarahorme9415 I have hEDS, but have had no dislocations. (Sprains and a freak knee injury as a kid, and mild subluxations of both shoulders in high school.) My pain is muscle and joint. Your allergies sound more like an autoimmune issue. Could you get a second opinion from a different rheumatologist, who could evaluate you without reading what the other rheumatologist wrote so the second opinion is unbiased? It could very well be AMPS, but if you have doubt, having another set of eyes on your symptoms would be nice.

[@hannahlack1061]

over 2 days ago I started experiencing symptoms of what might be POTS it's a long list: Constant shaking when sitting or standing, palpitations, chest pain, nausea, exercise intolerance (collapsed from jogging up the stairs even though I usually run up them), some brain fog, headaches, stomach ache, shortness of breath sometimes (dw I tested negative for covid) and really cold feet (which did turn purple once). So far they have told me it's anxiety. I have told them I am so relaxed but the symptoms stay but they brush it off. Hopefully I can go back at the end of the week and get them to listen to me.

[@SnowySpiritRuby]

If you know for sure it's not anxiety, keep pushing - lots of doctors will write off POTS symptoms as anxiety when they aren't, although there are other things besides POTS that can cause those (for me, we tested for (and ruled out) thyroid and blood sugar issues, as well as Lyme, just to cover our bases, so when those came back negative we knew it was something else) - I had to see 4 cardiologists before I finally found one who was willing to actually order a tilt table test (my primary and neurologist had been pushing for one for months, but no one listened).

[@katejackson6502]

This sounds very much like my experience with the shaking as well! They tried to push the anxiety and stress angle with me as well. Just keep pushing! Also compression socks can be a godsend! And recently I learned of salt tablets as well.

[@Dulcimerist]

Yeah, anxiety is what doctors say when they're being lazy. Keep pushing until a doctor listens. For me, my POTS turned out to be an indicator that I had hypermobile type Ehlers Danlos syndrome - which also causes me exercise intolerance, brain fog, headaches, stomach aches, shortness of breath, and Raynaud's (cold feet with purple colors). Maybe a doctor can try you on Mestinon, so see if it reduces your POTS and exercise intolerance: www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/

[@elvisedimo5694]

@@Dulcimerist HELLO DID IT HELP YOU?

[@Dulcimerist]

@@elvisedimo5694 Yes, Mestinon has been a miracle cure for my POTS and my digestive dysmotility. I started out at a very low dose of 30mg twice daily, and slowly and gradually worked up to the normal dose of 60mg three times per day. I'm currently at 60mg four times per day, which seems to be perfect dosing for me. This medication needs to be started at a low dose and slowly increased during the course of several weeks, to avoid digestive discomfort. I've had zero bad side effects. It's given me extra saliva production as the only side effect, which is actually a benefit since it cancels the dry mouth one of my other medications gives me.

[@nickfitz9800]

Good video. Stay strong. I really like your advice about advocating for your health... and Drs. are not perfect.

[@l0verc0re]

I know I have POTS but nobody, not even my doctor believes me. My POTS test came back positive, but they blamed it on a medicine that I took (even when I told them the POTS symptoms happened before my medicine) and told me to exercise, even though that makes me feel sucky, and eat a lot of food. They won't let me drink any ice tea, and just everything sucks, I'm even starting to doubt myself, who do I talk to?

[@HealingWithRachael]

I'm really sorry you're struggling so much! I'd recommend looking in Facebook groups for doctor recommendations in your area. Most states/countries have a dysautonomia or POTS FB group. Good luck!

[@elletheblacklabservicedog7293]

Thank you for talking about underlying conditions! I just got diagnosed with Epstein-Barr virus and CFS and I know that Epstein-Barr and POTS are related and I flipped when I found this out as I’ve been showing signs for a few years.

[@HealingWithRachael]

I'm glad it was helpful in some way, but am sorry to hear you're struggling! All the best to you!

[@elletheblacklabservicedog7293]

Rachael Elizabeth thank you sm! I checked my heart rate lying down (69 bpm) and then standing up(119) I thought I had mono a few months ago but I was diagnosed with chronic Epstein-Barr virus and then found out POTS was typically caused by EBV. So I’m pretty sure I have POTS and will check with my doctor soon! 💗🤍

[@Dulcimerist]

Sorry you have POTS, EBV, and CFS. Have they tried you on Mestinon to treat your POTS and CFS? www.healthrising.org/blog/2016/06/17/mestinon-chronic-fatigue-vagus-nerve-stimulation-exercise/

[@KulAcoustics]

Anyone who is suffering right now please look into thiamine, magnesium and vitamin D. Magnesium helped me with my dysautonomia but it was thiamine and a decent b-complex that made a big difference :)

[@elizabethvandeventer5487]

Keep up the good fight! 😁😁♥️

[@HealingWithRachael]

Thanks Elizabeth!!

[@christinatyler5051]

I was wondering if you ever had a sacrum MRI to see if you have perineural cysts or sometimes known as Tarlov cysts? This is a common issue that causes Chiari Malformation, craniocervical instability, and goes hand and hand with EDS.

[@natalietippetts4394]

Hi, my name is Natalie Tippetts and I also got diagnosed with POTS 2 weeks ago. I was wondering if you could tell me, in your opinion the worst part about having it and how you would get people to understand what you're going through. I am doing a project on POTS so it would be very helpful. Thank you.

[@miasnowbelle]

Natalie Tippetts I know I’m not the response your asking for, but I also have pots and i would say the worst part for me would be being extremely fatigue, and migraines. I want people to know they never know what’s going on with someone so be kind!! (:

[@harleystevers9289]

I have it too I was diagnosed in January 2019 the symptoms started November 2017 so at least I know now.

[@HealingWithRachael]

I’m glad you finally have a diagnosis + hope you’re able to find ways to manage. 💚

[@marshagreene7926]

Harley Stevers hi can I ask what the doctor gave you for your symptoms?

[@Dulcimerist]

@@marshagreene7926 My doctor prescribed me Mestinon and a small nightly dose of Clonidine to treat my POTS. Other options to treat POTS include Guanfacine, Ivabradine, or a beta blocker.

[@scottcampbell5536]

I had myriads of Doctors tell me Salt + water. I was guzzling sports drinks with electrolytes every day. No change - CPAP did nothing as well and I was diagnosed with Mild OSA, the machine just irritated my sinuses. God help you if you have kids and a family like me. Its an absolute nightmare.

[@Imtheone84]

How are you doing now? I'm going to be getting checked out for this.

[@sophiaf8438]

Hey guys. Ive been kinda sick lately and heres a list of my symptoms: Shaking, Palpitations, chest pain, nausea, dizziness, lightheadedness, brain fog, headaches and stumbling when walking. This happens mainly when im walking around/doing chores. Should i see a doctor?

[@HealingWithRachael]

Hi Sophia, I'm sorry to hear you're struggling with those symptoms! I would definitely see a doctor if you can.

[@coachsteve9467]

Yes... a cardiologist has to diagnose you

[@bellaburda8597]

Did you hit your head prior to? How is your posture?

[@abbycardenas2617]

@@HealingWithRachael I had mono a few months again to and then a lot of the symptoms with pots

[@monicamoreno302]

I recently started feeling the exact symptoms of POTS what specialist diagnosed with POTS?

[@JewelRNelson]

Thank you for sharing! I’m curious with pots does your heart rate decrease after standing or moving? I have an elevated heart rate when I stand, but it decreases with movement and the longer I’m up.

[@Sara-world]

I've been following your channel for awhile and am just now seeing this video. Crazy I got epstein barr too and was never the same. Diagnosed after 8 years struggling with pots this year. I'm currently working my way down the csf leak route too and am trying to make an appt at Duke. Hearing you talk about cranial hypertension is interesting. I thought I might have cranial hypotension because I get these seizure like attacks. Did you have the needle inserted at Duke to read your pressure? What was your number? My headaches are usually at the top of my head and feel like pressure and brain freeze. More numb disturbing feeling than aching or throbbing pain and they come on as the day goes on never in the morning. I hear headaches at the top of your head are associated with cranial hypertension. What do your headaches feel like and are you still having them after your cervical instability injections and dnrs therapy treatments? Did you ever treat the cranial hypertension? I know for a fact I have a massive herniation in my thoracic spine. I hope I can get into Duke soon.

[@maryjaneV9]

Thank u for your story and info..I hope you have been successful in managing this condition and only using it as an empowering boost than a fear based situation....i’m guessing that you did try Craniosacral Therapy, right?

[@HealingWithRachael]

Thank you! I'm doing much better now actually. I have some recent videos about what's helped me. Brain retraining has been huge for me as I recover from POTS!

[@mrs.2214]

Hey there. Did you happen to see Dr. Goodman at the Mayo? Did he not help you further and thats why you ended up at Duke for additional testing?

[@SirNancelot]

I have POTS too. :/ My electrophysiologist has me drinking 2L of H2O per day with NaCl tablets. It helps. My BP was freakishly low before and I felt awful. I feel a lot better now.

[@HealingWithRachael]

I'm glad to hear you found something that helps!

[@elvisedimo5694]

Was yours caused by low Sodium levels? How many NaCL tabs and what mg? And for how long ? Have you been healed now? Pls share. Tnx

[@magicalpatterns]

What’s it hard to adjust to the beta blockers? I just stared recently and I’m not diagnosed yet. Thank you

[@HealingWithRachael]

For me, it wasn't difficult to adjust to beta blockers. But I started on a very small dose. I saw the benefits within the first day. I hope they help for you!

[@Dulcimerist]

Hoping you adjust to the beta blocker, and that it works for you. They don't work for everyone - I had an adverse reaction to them. If they don't work, there are several other options - Clonidine, Guanfacine, Ivabradine, or Mestinon. I ended up responding best to Mestinon and a small nightly dose of Clonidine. (My POTS is caused by hypermobile type Ehlers Danlos syndrome.)

[@asalaices1]

Very helpful, thank you so much. Propranolol has helped, somewhat but I am getting to the point where I am losing some of my core functionality, as I have to be very careful how I move around. Migraines haven't been better tho, and that is bad news for me. God Bless and hope you get better

[@rachelarc8837]

Love love love this! Mine didn’t start until I reacted to metronidazole antibiotic... which cases a B1 deficiency.

[@imamgry5554]

Omg, Iv just been diagnosed with this. And also it happened to me just after I took an antibiotic that I had an allergic reaction too! I wonder how many people have got this after antibiotics x

[@rachelarc8837]

FlaMe BlitZ it’s from toxicity. Antibiotics are very toxic. B1 should help the heart palpitations and electrolytes

[@SnowySpiritRuby]

@@imamgry5554 Mine kicked in full force because of mold.

[@southerncalifornia3155]

Rachel yes B1 ...have you seen Dr Eric Berg

[@rachelarc8837]

@@southerncalifornia3155 yea I have!

[@justinrogers8350]

If you haven't I highly recommend checking out Caring Medical on youtube. I'm no doctor, former army medic, but given the high intercranial pressure and POTS you may have an issue with your cervical spine. I feel like I may be having the early onset of POTS as I notice a pretty decent jump in heart rate when I stand. 60 to 100ish and when I lay I am bradycardic < 55bpm lowest I have seen is 44. Doctors are making no progress in figuring this out. Seems like if you don't have something "cookie cutter" they are clueless. Praying for your recovery and healing from that terrible disease, God Bless!

[@HealingWithRachael]

I'm literally at Caring Medical getting treated right now haha. I have lots of new videos about it :)

[@justinrogers8350]

@@HealingWithRachael that is great news, I pray you find all the answers you need to get on the road to recovery!

[@aicetaylor8332]

i exactly have those symptoms! but the doctors here in the phils cannot say what my problem is since my other tests turned out to be normal except that i still have to do the tilt table test, i am actually starting to get anxious and really worried cause i know i have a problem because of what im feeling but no one can tell me what's exactly the problem! i hope i can find someone who ca really help me

[@HealingWithRachael]

I hope you can find help soon 💚💚

[@lynettelaroche8868]

aice taylor I am going through the exact same! I’ve been sick my whole life with dizziness, migraines, chronic fatigue, blood problems & now for the past few years I’ve been diagnosed with tachycardia syndrome but my heart is fine? I’ve seen 3 cardiologist ‘s and none can fix the problem. I’ve been put on meds for high blood pressure & to slow my heart rate but it’s not working. When I stand I get really dizzy & my heart jumps up 30-40 beats! No dr has given me a tilt test & I asked to be monitored & the dr said there’s no need because I know for a fact it’s gonna raise your heart rate when you stand,walk or are active. I’m already 42 & I don’t know what to do? I’ve never actually fainted but came close, I see stars & I get super weak & trouble breathing & have to sit back down right away. Good luck , I hope you can get a diagnosis soon!❤️

[@kimbellschneider749]

You need a cardiologist who has diagnosed POTS before or you need to go to an autonomic specialist to receive a tilt table in your area or you may have to travel to do so, Lynette . If you have POTS, even though you could be hyperadrenergic (due to blood pressure spikes), you shouldn't have to be on blood pressure meds for hypertension, as I was also. I took myself off of my angiotension antagonist, Losartan. I'm still on Clonidine for blood pressure spikes and adrenal surges, and I'm on a long acting Beta Blocker; everyone is different, but you need to find a doctor that will work with you, even if it is your primary doctor, who is willing to experiment. I became sick when I was your age, although I believe I always had this, even when I was younger, and I compensated by exercising and being active. It took 13 years for me to be diagnosed, even after going to all the right doctors, and I've been diagnosed for 8 years now, and I'm still making changes, and still being diagnosed with other illnesses; I stopped going to some of my doctors, because they weren't helping me anymore, so I decided to make changes. You have to advocate for yourself, because no one else will do it for you. It may be that it may take awhile, but we have the rest of our lives, I have two grandsons, and I'm not a quitter. My faith in Jesus Christ and the power of prayer has helped me immensely, but I'm also a retired RN, and I just want to continue to feel better. Exercise is imperative, too!! Never give up; keep fighting the good fight!! Take care!

[@lynettelaroche8868]

Kim Schneider Thank You So Much!!! Take Care of Yourself & God Bless!!❤️

[@Dulcimerist]

@@lynettelaroche8868 Hoping you can find good treatment options! My POTS is from my hypermobile type Ehlers Danlos syndrome, and was fixed with Mestinon and a small nightly dose of Clonidine. Other treatment options for POTS include Guanfacine, Ivabradine, or a beta blocker.

[@BlueSolarMonkey5]

Hey thanks for sharing this! I believe I also have POTS and EDS but having trouble getting proper diagnosis. For me the underlying problem is mold illness and I know this is the case for many EHS/POTS sufferers. Just thought I'd throw that out there for you and anyone else looking for answers. Sometimes the mold can be hidden behind a wall so you can't see or smell it but it can wreck havoc on your health.

[@HealingWithRachael]

Thank you for sharing! I actually just recently watched a video about mold toxicity and found it very interesting. Definitely something to consider.

[@SnowySpiritRuby]

That's what caused my POTS to kick in full force (I was living in an apartment that had been flooded - twice); yeah, it's not easy, and it took over a year for me to get diagnosed with either one. Thankfully things are going better now (POTS is definitely not gone, but the major mold symptoms have reduced a fair bit, thanks to meds), but I still can't go in my parents' laundry room without an N99 mask on - my legs give out instantly if I do - because there's so much mold in there (the more I detox, the more sensitive to mold I get, which is a huge pain, but it's proof that I'm doing better than I was). Have you read Neil Nathan's book *TOXIC*? My Dr. suggested it to me when I first got diagnosed - it's an interesting and informative read.

[@inscoredbz]

I got it after COVID. It sucks. The fatigue and being off balance sucks so bad. I still work 10 hours a day and it is so hard.

[@kyleepikee]

To be honest I wish that when I got diagnosed it wasn’t through the actual tilt table test because not even 8 minutes in being tilted 80 degrees I passed out for the second time in my whole life. hated it. the nausea feeling before passing out is the worst.

[@Needless2say]

Just random thoughts like mold exposure, candida infection, deficiencys ( and other B's) thiamine .Thank you Dr Peter Osborne, and EO nutrition channels.

[@pinklemonade6597]

I think I might have it, I have enemies and whenever I stand up my heart beats really fast and I get nosebleeds a lot. I hope I don't tho

[@Kevin-bi9wj]

Good Morning, So what therapies are you using currently...did not resume the beta blockers? did you use the CPAP device? Thanks

[@jfkj1695]

I'm Trying to get diagnosed. They kept brushing me away. I finally realised why. Because I am a man. I have bought loads of kit to record my heart rate when standing.

[@Cw-wi6uj]

I am also suffering from pots I have the cranial pressure! I haven't confirmed exactly what I have yet but the 2 possibilities are pots or cervical instability! Have you looking into cervical instability?

[@basicbarks]

Question!! Is anyone here prior military?? I am and I've been having the same issues. It's the reason why I've got out the military after 10 years....had a promising career and all of of a sudden I was hit with these symptoms!!! Just would like to know if any other vets are going through this!!!

[@DoorDashers791]

I have multiple sclerosis since 2003 I just got diagnosed with pots 2 weeks ago

[@Mmk5353]

Up until recently I legit thought blood pooling and rashes on my legs after a shower was normal and that everyone gets lightheaded and dizzy everytime they get up

[@TheHumanChopHuman]

My eyes look the same, and I'm pretty sure I have this. Is there a certain look that people have when afflicted with POTS? Seems to be a dark eye, with puffiness with most people I see with it. Thanks to anybody that feels like responding

[@katejackson6502]

I have the exact same look as well.

[@TheHumanChopHuman]

@@katejackson6502 btw, I got my pots diagnosis. 🙃🙃 now they think EDS is part of it

[@Dulcimerist]

Dark eyes are an Ehlers Danlos trait.

[@AWARNESSTHRUMOVEMENT]

Yes i have puffy dark eyes.

[@Truerealism747]

Minerals cause dark eyes I used to have this but not now

[@ratfacekick]

You're so much smarter than me. Been dealing with with this on my own with diet and whatnot for 10 years, finally realizing Its not enough. Any chance you wanna be by new primary doc? :)

[@GTX970TI]

I have been struggling with Pots for 2 years now. Has your cardiologist told you if there are any surgical procedures eg pace makers etc ?

[@cammag4619]

I also have POTS, I eat betablockers and this summer with extreme heat I got overheated several times, read you should avoid being in to much heat in the summer when you take betablockers.

[@craftyaddie7388]

What if when you stand it happens then goes away and then be fine?

[@bitsurfer0101]

It's strange you should mention tunnel vision. I experienced that before the fatigue really set in. I'm not sure what I have but I'm wondering if I do have POTS now. I also experienced some light-headedness, and dizziness as well. Did you ever have Epstein-Barr virus apart from the POTS symptoms? I'm wondering if it's related to something in the immune system. I started feeling the fatigue when I was out for a bike ride and hasn't been the same since then.

[@HealingWithRachael]

Yes, I have had chronic EBV since I was 10. I wonder what roles it plays. Best of luck to you in finding answers! Local FB groups have been helpful for me in finding doctors.

[@James_David]

Went down the UARS route too, then discovered I had CCI.

[@sarahherrmann2357]

I have pots too and it’s not fun hahah love you guys

[@pilar689]

I struggle with feeling lightheaded and almost to the point that I'm going to pass out when lying down, could this be the same thing? Have Tachycardia due to Covid.

[@TheDeeba2]

You might have IST

[@martinward6463]

You are so pretty !!

[@jadec7722]

What I dont understand is why my HR can be a good 125 while sitting at rest. It doesn't add up with the description.

[@DoorDashers791]

I got diagnosed with inappropriate sinus tachycardia

[@LivingFree207]

Me too. I understand it can overlap with POTS.

[@otheracc5831]

I was recently diagnosed with pots. I’m going back to my doctor for meds and more information, but it may be a while because of the holidays. I’m a competitive dancer so I am very active and I was dancing when I realized there was something wrong. Do you or anyone have advice for me?

[@siaserenity]

Penelope Byng it really depends on what your doctor says, but just try to drink lots of water eat tons of salt and the rest is up to your doctor to help you with honestly

[@HealingWithRachael]

Hi Penelope, I'm sorry to hear you were diagnosed with POTS! My best advice would be to continue to research your symptoms and try make sure you don't have any underlying conditions causing your POTS (if possible). Be open to trying new treatment methods until you find something that works. You aren't alone!

[@mandybutnotpatinkin]

How did you take your pulse for the "poor man's tilt test"? Or- do you (or anyone) have any recommendations for budget-friendly heart monitors (like fit bits, etc)?

[@leiabethune955]

Mandy H download the app “instant heart rate” but it will only let you test 5 times for free. Which is long enough to find out if you have it basically.

[@SnowySpiritRuby]

I use a small finger tip pulse oximeter that I got on Amazon for $20. There are ones out there with all sorts of features and at all price points, but my simple one works for what I need, and was more than enough to do the PMTTT.

[@fashionbecomesher1665]

@@SnowySpiritRuby I second this suggestion! With my simple oximeter from aliexpress I found out about my weird rising heartrate when I stand up. Its so easy to test yourself and you will have something your primairy doctor/gp/huisarts cant ignore.

[@DoorDashers791]

It messes with my blood pressure also high.

[@southerncalifornia3155]

@Rachael Elizabeth and how are you doing now?? ....it must suck not being able to exercise... again

[@sixstringcaffeine]

Have you tried supplementing with B1? There is an oil-soluble version called Benfotiamine that works well for me.

[@hannahlulu-tr2tt]

I have this happening to me. After covid I have pots and having further test now to see if I have anything else going on

[@loveconquersall143]

Sounds definitely like adrenal fatigue - most probably due to overexercising. That's what happened to me too! 😢 xo

[@jainendramishra6855]

My pulse rate in resting is 70 and when i stand my pulse goes to 130 is it disautonomia or pots or autonomic dysfunction

[@pizzapartytime1826]

Different for everyone

[@DoorDashers791]

Having multiple sclerosis and pots it's bad. Unbelievable

[@Among_the_ashes]

Do you have a port? I am wondering how it impacts CCI? I have it at C1/C2 and going to try stem cells this year.

[@HealingWithRachael]

I don’t have a port, as I personally do not feel comfortable with having a central line and it’s risks and will do anything to avoid it. I hope stem cell works well for you! All the best!

[@jl8805]

Is POT a chronic illness? Can you have just POTS and no other underlying condition?

[@HealingWithRachael]

It is a chronic illness! I am actually not sure if you can have POTS without an underlying cause.

[@jl8805]

@@HealingWithRachael thanks for replying to my comment. :)

[@Truerealism747]

Have you got pain to I got over this but fybro symptoms nowadays

[@DoorDashers791]

How are you doing now

[@Needless2say]

Thank you for sharing and thank you Dr Eric Bergs, and EO Nutritions talks about B1 and other B vitamins reguarding Pots channel and

[@toletstalkalilmo6330]

How are you feeling now ?

[@angela1981]

How are you feeling now? Have you looked into b1 deficiency? Alot of people with lots are deficient in b1

[@aza3921]

Im worried i have this had after been to my first cardiologist appointment cause im 17 and my walking and standing time is getting lesser and lesser throughout my life and now im using a wheelchair not just cause of pain in my legs but because i get really dizzy and fatigued after 10-15 minutes of standing / walking i used to be a lot more active as a kid and im hoping to mention some of the symptoms i experienced like these that i didnt consider to mention before

[@aza3921]

Cause they tested me but had no explanation for my extremely high blood pressure, aswell as ive had so many symptoms, so ill probably attempt that test and see if i should bring it up with my doctor

[@romascopa8461]

I think I deal with this, not 100% sure. I just know my heart, body, and head do really weird things when I stand up. But if I do something like crossfit, it seems ok. Not 100% sure. It makes me nervous to push it to the limit, feel like I'm gonn have a damn heart attack.

[@tomaschazarreta1263]

One question and please respond because I need to know if I have pots or not? Do you guys sleep like excessive amounts of time. I have symptoms similar to POTS and I'm always tired and I sleep like 10+ hours per day

[@Alex-px6md]

2K Doctor well i would talk to your neurologist about wanting to giver tested for pots. Being tired can mean multiple things. You could have POTS or you can have cfs( chronic fatigue syndrome)

[@aligaming7666]

Also check your thyroid

[@sarahorme9415]

On a really bad POTS day, I can be really exhausted and sleep a lot, but taking naps is not recommended for POTS, so I try not to.

[@elvisedimo5694]

@@sarahorme9415 Really? Why?

[@sarahorme9415]

@@elvisedimo5694 *bewildered shrug* I guess it just messes up your sleep schedule?

[@brianzimmerman4710]

What are you taking/doing to manage your symptoms?

[@HealingWithRachael]

I've tried lots of things & have more videos on my channel explaining what I've done. Lately I have been doing a very strict elimination diet of beef, salt, and water. Hoping for great results!