The fatigue is simply horrible. 3 years of doctors telling me there is nothing wrong with me. Finally one doctor found POTS was the answer for the Fatigue, pins and needles, anxiety and depression. To who ever is reading the comment let’s beat this together
Perezident Tv so sorry you went through that, it’s such a relief to finally know what’s wrong isn’t it! It all starts to get better from there, keep hanging in there! 💪🏽💕
Georgina's Journey I feel the same way. Like “why do I have to go through this” I’m sorry but I go Monday to get my medication. It’s blood pressure pills beta blockers. Did you take the same and did it help? I pray to god that helps
Love this It took me 5 years, 7 different cardiologists, who knows how many GP appointments, but finally at the beginning of this year on my 7th different tablet I got the relief I was looking for. My life has been turned around, thanks to one GP. I've had a crazy year, qualified as a swimming teacher (and absolutely love it) met lots of new people and I'm finally on the way up. Looking back at all the tough times, it was worth it. There were days I don't know how I even functioned and fortunately those days are in the past Whatever your story, and whatever your situation, never lose hope. Never stop trying 💪
Kurtis I loved reading this so much, thank you for sharing! So happy for you that you’re finally doing better after all of that perseverance, it really does pay off, doesn’t it! :)
@@GeorginasJourney when you mentioned you went through a similar thing I could relate to it so much. Life is tough, but yes it definitely does pay off. Perseverance always wins
I was bed-bound for three years, due to my hEDS - combination of the pain, fatigue, and POTS from it. Calf compression sleeves plus a cocktail of Catapres, Cardura, and Adcirca fixed me up really well. Catapres (generic name Clonidine) is emerging as a major help for many people with EDS-related POTS, since it increases blood volume and reduces the overactive sympathetic nervous system response that's so common in EDS people. After getting my compression calf sleeves, medications, and was finally able to put on better muscle mass, I went from bed-bound to walking for 40 miles nonstop during a cancer fundraising event.
What a shame that we have to go onto all of these medications though. Because in time, what nasty side-effects might they all have...? 😞 I've just started on Lifewave patches - so I'm going down the now natural route. I'm gonna see what happens with those instead in time 😉
This was very helpful. Thank you so much! I was just diagnosed 2 days ago. My first POTS attack was 3/1, and was bed ridden at home since 11th. I was in & out of the ER 3 times, thinking it was my heart. But cardiology came back that I was 100% healthy. Wish everyone the best here!
I'm happy to hear you found it helpful, and I hope you start feeling a bit better soon! I found being undiagnosed by far the hardest part! It's slowly going to start getting better from here :)
I had this exact experience as well! I was diagnosed with POTS over a year ago but did not really have an issue with my heart rate. This past week I had an episode and I was so so nervous my heart was not functioning correctly, and I’m only 23. I kept going back to the ER every time I felt something different bc I was so scared but they gave me the same answer - heart was completely healthy. Now I’m adjusting to medications (I’m on a very low dose of metropolol and still working through the correct timing/dosage). I’m hopeful but still anxious.
Thank you soo much. I am watching this from my hospital bed right now. My doctor thinks it's POTS but she want to eliminate anything else before she say for certain that it is pots. They did all the testing and now they are adjusting my meds. I love all the tips you gave. You give me hope. Thank you very much for making this video.
Sounds like this is the start of things getting better for you, Barbara! It takes time to figure out what works, but you can start trying things now that you know what’s going on, I really hope things get better for you from here, I have a feeling that they will ☺️
Hi, you are so wholesome. Thank you for putting hope onto the internet. I'm in USA, and doctors won't listen, and I can't afford the thousands of dollars to keep going back over and over. I've been trying for 4 years. I wish I could guarantee somehow that they would listen and it won't be a waste of money. But maybe it's worth persistence, if I can improve like you have.
Hi lovely, thanks for your lovely words ☺️ My main advice if doctors aren’t listening is to go to your GP/family doctor , tell them about your heart rate fluctuations & ask if you can try a beta blocker. I think this is the only pots med that can be prescribed by a GP, but it’s often a good place to start with treating pots if you can’t see a specialist &/or are struggling to get diagnosed. Keep me updated with how you get on if you’d like to, there is hope that it can get better one day 🤞🏽I also have a video on some natural pots remedies that may be helpful in the meantime too. Keep persevering!
You are right. Doctors here in the US won't listen. But, Vanderbilt University Medical Center in Nashville, TN has an Autonomic Dysfunction Center, where they are considered one of the nation's leading experts in dysautonomia or autonomic dysfunction. It's good to get a referral for an appointment but you don't have to have one. They do accept insurance. Google them. I hope this gives you hope. Best of luck.
Prayers for you! America is a HARD place to live in for health care 😞 (I'm in Australia, my partner/caregiver was from England originally - but he passed away suddenly), and he used to say to me that the health care system in America is like a third-world country. He was right 😞 I really wish that things would change over there for you x
Love your story! It’s not always a boom change for people and people need to hear that. I spent a long time not even knowing what was wrong with me, just that, “ooh yea I do that when I stand up too fast!” when people would be like ARE YOU OK!? But as it got worse and bedbound me, we knew we had to search for answers. Luckily, shortly after my EDS diagnosis, my one doctor, who is knowledgeable about EDS and comorbidities, was like, you have POTS and here’s a doctor that specializes in it 🙌🏻 I was also lucky that most of the standard suggestions do a lot for me (6 grams of salt a day, I mix my own special drink that took some time to get used to but now I don’t even taste the salt, compression garments (which is catch 22, helps till I overheat👍🏻), and doing the morning thing like you do). After several months and heading into the summer, we knew I would need more than that. Midodrine has helped sooo much! So I guess what I’m saying is, don’t give up ever. Sometimes it takes a lot of different things. We spent a year after diagnosis finding just the right amount of things that worked, and some days... they still don’t. But overall, I feel like I can be “normal” (what is that anyways!?) and enjoy my life more. It is very dark feeling stuck to your bed, but even then, there are things and help to make that feel better too. ❤️❤️❤️❤️
Cheylynn17 all of this is so true, I hope other people read it too! Yeah it definitely wasn’t a sudden change for me, but looking back, I’ve now made some really significant improvements :) Glad you’re doing better and have found things that help you too!
So glad you're feeling a bit better, i believe in time your body will continue to adjust. Last year my pots was comparable to yours except my anxiety and depression was so bad that i couldn't eat or sleep. I got back on an antidepressant and it helped quite a bit. Over a few months with the proper care and what exercise i could do, it went away completely. Now due to reckless behavior it came back but pretty mildly (80-90 bpm resting, 110-130 standing and walking around) i don't get lightheaded or pass out and can eat and sleep. I can also do quite a bit of exercise. Anyways, I'd like to point out that for those who don't have an underlying condition like an autoimmune disease or physical condition which directly affects your circulation, a psychiatrist may be of great help, (not saying that it's all in our head) chemical imbalances in the brain can certainly affect the heart rhythm as well as vascular function. And there are many different psyche meds that can correct that. Try to ignore the stigma behind it. Sorry for the long comment but I'd like to say you're amazing and a great role model. When i was at my worst i remember finding your videos and wondering "how is she even smiling" it gave me hope. Thanks so much and God bless.
EZ Duzit I’m so glad you’re doing a bit better now, but sorry you went through so much! Some antidepressants are actually known to help with pots regardless of mental state so that’s a really good point! & if it helps both, that’s even better :) Gosh thank you so much, that means so much to me! I hope this finds you on a good day :)
@@GeorginasJourney the beginning is rough because you don't know what's happening, and i had doctors that had to google POTS in order to understand what i was talking about. But with education and the right steps POTS and IST can be manageable. Anyways, you know what time it is already lol i hope anyone who's struggling finds your channel.
I had my son March 24, 2019 a week later I collapsed. I have been bed bound since. Your the only other person I found who had this severe like me. I havent been able to sit up at all or hold my son. I missed his infant stages. My mom and grandmother and sisters take care of us both. I feel like hes not even mine because he prefers them over me. I know its cause they can stand and hold him but it still so painful. My son is learning to walk and run and Im missing it all cause I cant leave the bed or even sit up. I tried the medicine but it made my heart rate fine when i try to move but I still pass out and have seizor like episodes. They made me feel really bad when I go to bed. I feel so useless especially for my son. With the corona the tests have been put off even further. Thank you I really appreciate this. You made me feel alot better. You are the only one I found who has had pots where its close to mine as far as being bed bound for awhile.
Destiny Mignogna Hi Destiny, you’re not alone. I relate to what you’re saying as I was in the same boat in terms of my symptoms and the first medication I tried didn’t work for me either, but as I said in the video, there are a few options so don’t lose hope just because one didn’t work, and also it can get better again over time (for me it took 2-3 years of being horrifically bad, fainting and collapsing everyday just from sitting up, but then it started getting better!), once all this corona stuff has settled, I hope you can get more tests and try more medications to find something that helps in the meantime!
@@GeorginasJourney Thank you I do appreciate it. Also thanks for sharing your story. I hope I can get to the point where I can sit up at least and share mine. There needs to be more awareness about this disorder. I live in Las Vegas, Nevada in the USA and we dont have the proper testing for me out here. They need to send me to California. It took 4 months to finally get them to start working on it. That was 10 months after I collapsed. As soon as I was gonna make the appointments the corona happened and now I cant. Its crazy how quick that virus even spreaded. The last year doesnt even feel real to me.
Destiny Mignogna are you sure they aren’t testing you for other things? POTS is the easiest condition to test for as you can even do a poor mans tilt table test if necessary, all you need is a pulse ox which is one of the most basic pieces of medical equipment! Hopefully they’re sending you for much more thorough and extensive testing (when you are able to go) and you’ll be able to access more treatment options for whatever they find :)
Destiny Mignogna I’m so sorry to hear you go through this. I also have seizures from my syncope. What has helped tremendously with that is medical marijuana. That has helped me be a lot more functional. I was diagnosed with pots, syncope and hypotension a year after my daughter was born and it was very difficult. It took four years of trying different medications until I found medical marijuana. It’s been a game changer for me. Hope you start feeling better soon!
@@GeorginasJourney I did a tilt table but without the blood work or adrenaline test at the same time. This state doesnt have that. They test me for stuff in my head the found a patoratory tumor but its to small to do anything they said so they leaving it. The did a nerve test with needles but thats ok. They wanna send me out of state cause here they cant test much. So i have to wait for the corona virus to be over before they can send me somewhere else.
Georgina, you are an absolute angel! Thank you so much for this video and your others on POTS. I just had my diagnosis confirmed hours ago. Your video was so incredibly supportive and encouraging. You are such a breath of fresh air! Thank you so much for sharing your experience and knowledge and helping expectation-set that this can take a couple of years to see improvement. I just recently discovered your channel and will be watching more of your videos soon. It looks like you are on another healing journey at the moment. Sending my support and best wishes to you on your road to improved health. ✨💜💫
Thank you for making this video! Dx'd Feb this yr & bedridden x4 months. After mult meds was put on Ivabradine and made a huge difference, but needing to play around with doses bc I got to the point where I was exercising daily 20-30 min + 1hr PT x2/wk , driving, small errands so smaller doses weren't working as well. At my best so far I could walk 1/3 of a mile and 13 min/day on my bike before getting symptomatic. Had some setbacks lately and it's encouraging to see you getting better! Learning to be patient has been my biggest battle.
Danielle H. You’re welcome! I’m so happy things are getting better for you too! I know we’ve got a long way to go still but all of your progress is amazing! 😊 And that’s so true, I’m still learning to be patient too 😅
@@GeorginasJourney Thank you! Yes I'm constantly trying to learn more patience but my gratitude journal definitely helps put me in a positive mindset :). Have you ever tried a mini exercise bike/foot pedlar? I use it a lot especially on bad days when I can't get on my bike- so when I'm watching tv/on the couch I'm still working my legs and that's surprisingly helped a lot bc I can do that longer compared to the actually bike. The one I have is so you can alternate between using your arms and legs!
I was just diagnosed with POTS yesterday and found your videos today. I want to thank you you are very helpful in helping me understand this. I thought my problems had to do with my heart because I have had a triple bypass and 3 stints. My cardiologist diagnosed POTS yesterday and at least now I have an understanding of what is going on. I have been put on a low 20mg dose of blood pressure medicine as i do not have high blood pressure. When you have heart problems they tell you to stay away from salt but In my case, It seems I need it because my blood pressure is normal. Thank you so much, Georgina, for your help I will be watching more of your videos.
Robert Calaway you’re welcome Robert, when you say a blood pressure medication, do you mean a beta blocker? As they affect blood pressure, but I’d imagine you were primarily put on it for it’s effects on lowering heart rate. POTS is actually an autonomic condition (though it affects the heart), and so anyone with POTS is advised to have a lot of salt so that the body retains more water in the blood and thus helps with blood pooling and other POTS symptoms. I hope you find my other videos helpful, I have one on a channel called ‘Georgina Reads’ called Tips for Living with POTS which may be helpful too.
Robert Calaway okay, yeah that’s a beta blocker that’s really effective for lowering heart rate so you would’ve been put on it to lower your heart rate
@@GeorginasJourney Thank you for the advice and encouragement Georgina. Remember Jesus Christ is the one who created all of us and all creation was made by him and for him. It is not about us it is about him. Always love and trust the Lord.
I actually got accommodations in college to start classes later in the day so I can take my time getting up in the morning. I had been thinking of it as like "oh POTS symptoms are too bad for me to get up right away" rather than a preventative measure so it's neat to hear that it actually helps throughout the day as well! And getting a shower chair was a life-saver for me. I also try to use lukewarm water at most for my showers and aim for cold water bc hot water makes it so much harder. Showers in the winter are way more difficult than showers in the summer! I also try to drink water before taking a shower and have some nearby so I can sit and drink right after showering. Also, the way my shower is set up allows me to turn it on and off and adjust the temp without standing up which is super helpful too
ThatBeccaKid it gets better from there Becca! Even ivabradine isn’t right for you, there are a few different meds you can try to start slowly feeling better! After getting diagnosed and finding meds that worked for me, my life improved so much! I still spend many hours of the day in bed, but am not bedridden anymore! 😊
@@GeorginasJourney Update: the ivabradine is amazing! Its the only medication thats done something for me. I sadly reacted to everything else :( So im only on ivabradine and still bed ridden unfortunately :c Im so glad you're not though!! Keep kicking its butt
ThatBeccaKid that’s great news! You might continue to see improvements, don’t lose hope! I started out only being able to sit up for 5-10 minutes at a time & very slowly worked my way up to being able to sit up for 2-3 hours a day :) The rest of the time I still have to be lying down in bed, but you have to start somewhere! You should try sitting on the sofa for 2 minutes at a time or something now that the ivabradine is settling your heart a bit 😊
Me tooo 45 and growing into pots. I need a minimum of 30 min to get my baring before getting out of bed. I use a shower chair. I eat betablockers (propranolol) plus extra salt and water. If I get a slump in the afternoon I take 1/2 teaspoon of salt with a big glass of water, it helps. Tried CBD oil and it helped with My stomac problems but I don't think it did much for my pots. Great video! Thank you ❤️
Linda-Marie Hamrin it’s such a big adjustment at any age, hope you’re okay and that it’ll settle a bit soon! Sounds like you’ve figured out a pretty good way to manage it though :) I’ll have to try your tip for afternoon slumps, I definitely get those too!
Nice video! Thankfully I only have a mild form of POTS which more or less allows me to get on with my day as usual - really makes me take a different look at my own situation when I hear how bad it's been for people like you. I really hope your journey to recovery continues! For those with a milder form of POTS, I'd really recommend diet as a key thing to watch out for - cutting down as much as possible on carbs and sugar, and for me getting rid of caffeine completely has made a very big difference. Having some salt with every meal (but not too much) seems to manage the symptoms pretty well. Also I used to take propranolol every morning which helped a lot, but have since switched that to 80mg of pure lavender oil - doctors here in Germany were a bit suspicious of me taking propranolol and recommended this instead. It's called Lasea in Germany, think it goes by Silexan elsewhere, and honestly it's been fantastic. Calms my whole CNS down including heartrate, plus it's a natural rather than chemical treatment. Also gentle exercise (if you're up for it) helps massively. Plus it goes without saying, avoid stress at all costs - this does nothing but massively exacerbate my symptoms. Either way I wish everyone a pleasant day and best of luck with this.
Propranolol (a beta blocker) has been a wonder drug for me. I have all the symptoms of POTS, and whilst my GP isn't technically allowed to diagnose me on her own, she basically has done, mainly to save me from the stresses of referrals and hospital visits, which seriously increase my anxiety. (i've been in and out of hospitals since i was 14 and i'm just done with it) It's really improved my dizziness and i feel so much more steady in general, it's reduced my daily migraines/postural headaches to nothing (which personally, was my most concerning problem day to day), and it's even given me a little energy boost, a hard feat since I also struggle with Chronic Fatigue Syndrome/ME. Add to that its adrenaline-blocking effects, and my anxiety has also drastically improved. I spent a while getting the dosage right, I was originally taking it as and when, then my doc put me onto the standard 2 or 3 tablets a day dose and that reduced my blood pressure too much and i could barely stand up! I now take one 40mg dose in the morning, and since my POTS symptoms generally improve as the day goes on, added with increased salt and water and compression socks, i feel so much better. I'm still quite ill by healthy people standards, but i feel so much more like myself, and that's amazing to me. I'm not saying it's going to help everyone, but it's always worth a try as it has fairly minimal side effects for most people too. Wishing all my fellow spoonies well ❤️
Thank you for the video. Can I ask? Do you notice an increase in heart rate and or breathlessness when raising your arms for example when clean your teeth or reaching above your head? My heart rate goes from 70-75 too 128 when standing but does it need to stay high to be pots?
@@Callijon no, it can't. But it can help you not get deconditioned from inactivity, which makes you feel ten times worse. It's really hard coming back from that so something like bed yoga is even better than nothing, even if you don't feel like doing it!
Zoroqt ML there is not a cure for pots. There are treatments to make it where you can function in day to day life and can help with symptoms but there right now is not a cure unfortunately.
You’re welcome! Treatment is more important than a diagnosis anyway, so making the lifestyle changes and trying to get help with treatment is the most important thing!
Thank you for this informative, inspiring video. I am recently (finally) diagnosed, and always open to new tips and tricks to manage. Glad to see you doing better with your POTs! Stay strong!
Dermatillomaniac Hope this helped! I have a couple of other videos on my top tips for pots, on this channel and on ‘Georgina Reads’, hope they help! It gets better from here :)
Thank you so much, vor your good tips, sweet smiling and especialiy for your clean an holy Soul, with you are heliping other people to get new an better hop an better thinkings!
I can’t imagine going through what you did and others, wow! In 6 months I’ve fainted three times. I have only felt my heart really racing and had to lie down a few times, though my heart rate stays 100-120 usually. When I lie down I’ll get in the 70’s but as soon as I start walking or get up quick, it jumps up again. Awesome tips and good content as always. Hope all is well.
Georgina's Journey it never happened before in my life, so it felt so weird. Can’t imagine fainting in the shower though like you, that’s so dangerous. First time I fainted I was watching a game, had some chips in my hand. When I came around, my dog was quietly eating the chips instead of worrying about me hahaha. Can you walk say for like 15 minutes at a time, line go to a movie with friends or shopping, or do you start to feel weak and faint?
Tate Thompson I’m glad you were home, but I can still imagine how horrible that must have been! Your dog’s priorities are funny though 😂 Do you get pre-syncope? That’s the worst part for me as I’m so dizzy, my head feels like it’s about to explode and I’m either on the verge of being sick or I actually am 😷I don’t tend to be sick when I wake up thankfully though, I know that’s common for a lot of people 😬 No I definitely can’t go shopping with friends without my wheelchair or wait in line as I would faint, but I’ve come a long way from where I was a few years ago when I could barely get from my bedroom to the living room and then couldn’t stay there for more than about 15 minutes as I couldn’t sit up 😬 Change and progress is all relative :)
Georgina's Journey it’s amazing the progress you’ve made and I’m sure a positive state of mind goes a long way. By next year I’m sure you’ll be even better off. That’s good you have your wheel chair, most places now are more accessible for them, here in the states anyways. My dog I feel only uses me for treats and toys, haha. My symptoms aren’t everyday, I mean like today I was in Salem (witch trials town) and was walking all day, hr was in the 140’s but felt fine. When I have fainted, yes I get dizzy and like I can feel my body giving out and no matter how hard I try to fight it, I still faint.
Tate Thompson I’d say 90% of the progress I made is due to the things I talked about in the video, being positive is great but I don’t believe it can make you physically better if you’ve got an underlying cause to your illness like a genetic condition (which is the case for me)
I’ve literally just heard about this, and I fit all of the symptoms. They’ve never been that consistent as they are lately, but it was eye opening! I never knew this was an issue. I just always took it as something made me faint or get lightheaded. I just had no idea...thank you for your video!
swtpersianangel you’re welcome :) If you search ‘how to test for POTS at home’ you can watch my video which will show you how to get an indication of whether you have it or not- you can’t tell from symptoms alone & I urge you not to self-diagnose. Many people find it helpful to get a clear indication about whether they have it or not before they see a doctor :)
Thank You for You Sharing, I’ve just been diagnosed with POTS & I’m on Beta Blocker , I’ve only been on the medication 2 days, I Pray it helps, The Bed has been my life for 3-4 yrs.
When you had POTS? Did you get woken up like something scared u. And your catching your breathe. Because that happens to me. And I want to know if I have POTS. And did the medication really help? Also did exercise help? Sorry I have so many questions! Also we’re you always tired? Also I think I have POTS, but I don’t faint. Does that mean I have POTS still?
Yarely Yamulet I still have POTS, it’s just not as severe anymore. I would wake up like that when my alarm woke me, but I don’t remember pots itself ever waking me up, as it’s postural and should be at its most well controlled when you’re asleep/lying down. Yes, my medication helps- I have a video showing that- it’s my second to last one that I uploaded. & I have a video on how to test for pots at home on my other channel ‘Georgina reads’ that can give an indication of whether you might have POTS, and then see your GP if you think you do, although would probably be best to see your GP either way
@@GeorginasJourney thank you for your vidoes. I took a hot bath lastnight and I body went in to overdrive. It was def a rough night. I'm learned that tumeric and black seed oil are anti inflammatory herbs. They help me. I'm suler dizzy driving. Those help me cope. I'm not on medications
Hey great to see that u r recovering well.....but i have a big doubt to clarify georgia....when i stand up my bpm will go from 80 to 130 and comes down without staying there for a long time like itll be coming down in few seconds..and i dont feel any dizziness and all....i attached holter monitor too and the report said nothing....what do u think...bpm rising is the symptom of pots without diziness ?
jawahar venkat thank you! And if you’re not dizzy and your heart rate comes back down quickly after, then it doesn’t sound like POTS, what sort of numbers does it come down to?
jawahar venkat honestly, if you’re not symptomatic, I wouldn’t worry about it :) Although 80-113 is over the 30bpm rise, so you may have it, but still, if you don’t feel ill from it then there’s no reason to worry or do anything about it :)
I could not take beta blockers because my blood pressure was so low to begin with and taking that on top of it, made it worse. I felt even more faint. I also tried midrodine too but it hurt my stomach and my doctor told me that I couldn’t take it long term anyway. I am not certain what could help me other than resting constantly, but unfortunately, that doesn’t earn money. I have EDS, POTS, CFS and Hashimoto’s. Fatigue is my main symptom.
Emily Bradley ivabradine or fludrocortisone would be good options to try next. The first few meds I tried didn’t work for me either and even the ones I’m on gave me side effects to start with, but you have to be willing to give the meds a go and stick with it for at least a week to see if the side effects settle down. In terms of earning money, you can apply for disability benefits if you are unable to work. Hope this helps.
Hi. I have many signs of tachycardia and diagnosed blood pressure. I have a migrena and chronic gastritis and i do not eat many salt. I take beta blockers but it does not help. My doctor has changed my migraine and pressure therapy 4 times already. I'm still not well. My blood pressure is constantly changing but the heart rate is always high. Blood pressure 160/85 and heart rate 110 and then my head hurts. But in a short time it starts to get bad and my blood pressure drops to 110/55 and my heart rate is 140. Then I feel dizzy, buzzing in my ears, my stomach bloating, and can not breathe, I feel a strong heartbeat and chest pain and fatigue. I can not lie down for more than 15 minutes as it starts to get bad and I can stand up to 40 minutes before the first symptoms. I have been struggling for over 5 years with these symptoms. I am 19. Can loss of weight be associated with POTS? Is POTS treated with medication alone? Because of the frequent migraines, any medication has a bad effect on my stomach. I don't know what to do when I'm weak and I'm dizzy? Because it happens to me constantly. Can POTS be detected by lumbar puncture? My doctor still don't know what's wrong. I love all your video.
Petra Filić weight loss can be associated with POTS. POTS is treated with medication &/lifestyle factors such as drinking more water & eating more salt, using a wheelchair in severe cases, etc. No it is diagnosed using a Tilt Table Test- which you can google, or search on UA-cam for more information about that. If you cannot lie down for more than 15 minutes- it is unlikely to be POTS as pots is tachycardia associated with postural changes such as sitting or standing- POTS patients would not be expected to be able to tolerate standing for longer than lying down like you described, please let me know if you have any more questions, I hope you can get some help to make you feel better
I'm just now improving, i got diagnosed 2.5 years ago, but had to wait a year and half for diagnosis before that. I was on bedrest half a year, had to give up college (I was a junior in my second semester), and had constant ER trips. I'm trying to work part time now, its still a harsh struggle, but I'm slowly adjusting. I'm looking into new meds since my last one didn't help and caused a severe deficiency.
Samantha Clostermery sounds like we went through a similar thing, being able to work part time is a huge achievement after all you went through! I hope you can find something that helps you even more
Hey I’m 31 old guy, been struggling to to find out my diagnosis. I did the old man tilt table test. When lay down my heart rate 85-90 when getting up it’s 110-115. My cardiologist said I have pots and prescribed me ivabrine and propranolol. My blood pressure is usually normal when sitting down and heart rate is still in 89 avg. walking 108-118 on most days. I’m having a hard time figuring out if this is pots or axiety. Do you think trying these meds would help me at all? I have been hesitant for 3 years and seems like my symptoms getting worse. I know your not a doctor but would love some advice ❤
Hi there! Honestly, I don’t think it’s anxiety, I think it is pots. Is there room to up your doses on the meds? That could be easier on your body than adding another as those two are two of the best for lowering heart rate. You just would want to monitor your blood pressure if your dr approves increasing the propranolol, or look out for chest pain & visual changes (like light sensitivity) if dr approves increasing the ivabradine (& certainly don’t increase ivabradine without the go ahead from a dr). This advice may be unhelpful if you’re already on max doses, but I do know the midodrine & fludrocortisone typically have more success in stabilising blood pressure, but it could be worth asking about still & worth a shot!
@@GeorginasJourney thanks. I actually only tried a beta blocker in the past, and I was micro dosing it. I haven’t tried increasing it since I haven’t been on it since then, but I will consider the propranolol to see if that impacts my blood pressure too much because normally it’s 120/70 but heart rate is usually high. If it does then I can definitely consider ivabrine and start with small dosage my doctor said 2.5 mg to start then 5 mg, which are the low dose.
Ah okay, sorry I misunderstood, I thought you were already taking the prescribed medications, but yes, I definitely recommend taking what you’ve been prescribed! You can start them one by one to monitor side effects & and ease your body into it 😊
How do you differentiate between fatigue from ME/CFS and POTS? I've been feeling unwell recently, but I can't tell which condition is flaring up (or if it's both)
Millie it is quite hard to tell, but I have a pulse ox heartrate monitor, so one way is to keep an eye on those readings, if you’re tachycardic a lot it’s likely to be POTS, if you’re not very tachycardic except when standing, then it’s likely ME. Also dizziness, light headedness and palpitations can occur in POTS flare ups, so the presence of any of those symptoms can indicate a POTS flare too. That being said, it doesn’t help to overthink it too much anyway, I just listen to what my body wants (where possible), acting on instinct, such as lying down when fatigued, is usually the right thing to do :)
Link in the Grace I have a video on how to get a POTS diagnosis if you think you have it, it was a few videos ago now but have a look through my channel for it :)
Georgina's Journey I just went on a watching spree of your channel haha I’m currently in college and I can really relate to you, I’m in bed now actually and it’s 4pm lol I’m a collegiate athlete on a scholarship.. I started feeling bad my freshman year of college and now I’m almost 22 so it’s kinda rough...
Georgina's Journey haha yeah I’m a senior in college, i’ll be done in like 5 months. Also a collegiate athlete is someone who is really into exercising (an athlete) and I am getting money by my university to perform for them. I haven’t been able to do that because I got sick. It’s a tough time especially when doctors say I look fine but I’m not lol.
I've found your channel b.c I'm looking into pots for my soon to be fiance. She's been in and out of er visits over the 3 years we have been together and I'm truly worried. She was diagnosed with pots and I've been looking around forever how to help her out b.c she's truly a doll and I hate seeing her get out of breath and feeling weak.
That’s so nice of you to be looking into it and trying to help her! Search ‘pots test at home’ as there’s a test she can do at home that will give her a good indication of whether she has it! I have a video of how to do it on your phone and there are also videos of how to do it with a pulse oximeter if you have one
@@GeorginasJourney thanks will do. She has already been diagnosed with pots a few years back. But they still treat it as a joke or its all in ur head kinda deal at the ER.
@@Odd__Thomas ah okay, I thought you meant looking into her possibly having it. POTS is uncomfortable & difficult to live with, but it’s not actually an emergency or dangerous for someone to have, so that may be why they don’t always take it seriously in the ER, as they are trained to deal with medical emergencies.
I just got diagnosed with POTS recently, and the extra fluids and salt has not been helping me. I've been having chest pain really bad. Did you deal with that too? They're running every cardio test, and it's kind of worrying me. :/
Chest pain is fairly common with POTS, or it may be costochondritis (inflammation in your chest) caused by the high heart rates that POTS can cause, so I don’t think you should be worried at this point & it’s good that they’re looking into it for you :)
Hello! I’ve had Pots for about 2 years now. I started getting symptoms when I was 14 and I’m 16 now. I used to be so active and constantly moving and now I feel glued to my bed. People my age are able to go out for multiple hours on end and I feel so defeated. Does taking the medicine make you feel similar to when you were before Pots? How do you feel normal again?
I didn’t say I felt normal again. I explicitly stated at the start of the video that I feel better than I did before, but I am by no means completely better. I still use a wheelchair and spend a lot of the day in bed
But, with my medication, I’m able to go to university, for 1-2 hours a day, 4 days a week. I wouldn’t have been able to do that if I didn’t have my medication
How do you deal with hormonal fluctuations?? I get very symptomatic during ovulation and my period. Tried birth control and it actually made my symptoms worse
I have pots too, i was in midodrine and atenelol for more than a year already i took also sleep.meds,my symptoms are dizziness fatigue,insomia, anxiety, depression, coat hanger pain or upper depression..today i experience severe dizziness.. Pls help me...
the whole video was me trying to help. There is no cure, we can only try to make it get a bit better, as I explained in the video- I still have these symptoms myself, just not as badly as before. I feel as though I shared all of my information, experience and tips in the video, but do you have any specific questions ?
GRACE GEMINO I talked about that in my video ‘DNRS update for POTS and CFS’, that has a more detailed answer, but it basically depends on the cause of someone’s POTS
Georgina I have pots just like your described. I have gastoeperesis and possible mass cell. I lost 120 lbs in 8 months and I haven't been able to get help bc I can't even move barely or I freak out and almost die lol :( I feel like have no blood supply to my heart. I'm scared my pots is so triggered by my stomach I'll die. In trying to get treated but the aren't taking the gastric emptying scan serious and my blood pressure is alarming I can't calm down. I went t get psych evaluated bc the cop was an ahole an told me I need to be admitted and this has to end and my diagnosis wasnt even anxiety when I went😂 it was pots and sinus tachycardia. I feel like I'm gonna die bc lack of blood flow and insane blood pressure readings. I'm scared :( what if I don't make it in time to the initial Dr visit ..... I cannot calm down . Bless you 🙏🏻 I thought I was the only one who had it THIS badly. It feels like nothing helps the blood flow :(
Sorry you’re not doing well, what blood pressure readings are you getting? And what heartrate? Pots & sinus tachycardia are not normally deadly conditions, but if you tell me your blood pressure readings that will give me an idea of what’s going on I’m not sure why a cop or psych was involved? But yes, I used to feel like this for like 23 hours a day, thankfully now it is slightly better, roughly 20 hours a day that I feel like that now
@@GeorginasJourney with the other stomach stuff and my pots, chronic bedrest, BP is at a general all time alarming low whicj is alarming. It has been as low as 41 on the bottom number and one min later it was almost 200 or so. We called 911. This really started happening so much this week and I took it an hour ago it kept going super low and lower so I waited an hour or so about and it is hypertensive again. I have the most alarming numbers. It goes "deadly" low to "deadly" high. I called 911 again bc I felt like that was the end of my life that night and even to I said don't come I cam actually ok they came anyways and for the second time they told me I needed to be in a mental institution and I felt worse so I spent the night at mental outpatient er to get in the mental institution and I knew it was pots and my stomach diseases an chronic bedrest probably. And of course the diagnosis was not anxiety but sinus tachycardia and POTS. They PROMSIED me that it can't kill me and I haven't died in my sleep like I would think I would when my BP is lower but it keeps feeling worse and I do feel my heart stops beating it seems and I feel my body jump up and freak out and it saves my life seemingly. I dontrhijk it's cardiac arrest or stemi heart attack or whatever bc they didn't keep me long and it wasn't active very much well it was really high but they didn't see it go low bc they didn't check my BP in my sleep but we told them and they said my heart is cleared and the pots and other things can't kill me but I'm horrified with how low my BP is just awake and I guess I've been fine asleep bc I wake up every day nutim worries I'm gonna die today my heart keeps seeming to stop or nearly and my BP got so low for a while m mom made me stop taking it. I told her I need to go back bc all that's wrong and it's so bad my BP and blood flow but she insist not bc the Drs said I'm not gonna die even tho they didn't see it go really low :(
@@GeorginasJourney I told them it goes quite low as well as high tho, and somrtimes changes drastically in less than a minute. I'm so happy you are able to be somewhat better. This is awful and scary as crap
@@GeorginasJourney I don't expireence may symtoms when my BP is low but sees like my heart stops and my BP monitor scares me bc it went to 20 like twice and error while taking it but I was still alive and talking omg :( I'm a mess right now it's hypertensive when I took it.
Let me tell you my story, i had or should i say i think i had pots in 2012, every time i would stand up my heart rate would go up and this lasted for a year or so. But for the past years until now i feel normal, I go to the gym i lift and lift weights etc. what your opinion on this ? Im a male 29 years old
WorldGamingAssociation I’m so happy you’re doing well now! In some cases it does completely get better! Were you aware of if your heart rate was staying elevated on standing & by how much? That’s the only thing that could really indicate whether you had it or not, but either way, I’m so glad you’re doing better now :)
Kaleigh Martin can you see a new doctor? Or even get a GP to prescribe a beta blocker? There’s no reason they should be denying you access to medication when there are options that are known to help
It can take multiple doctors unfortunately before you find the right one. I've seen four different doctors for my dysautonomia. The doctor I see now has done everything he could to help me and I've gone from homebound 4 years ago to currently about 80% functional. I hope you can get the help you need and deserve.
@@GeorginasJourney my issue is that I am not 18 yet (will be in 11 days that I'm typing this!) and I have to see pediatricians. My main doctor dismissed it as anxiety and was saying a bunch of scary stuff that wasn't factual at all. My mom's a nurse here in Texas and pushed for me to go to the Cook's hospital in Dallas where the pediatric cardiologist said that since nothing is structurally wrong with my heart that they didn't want to prescribe me any meds like a beta blocker. we're waiting until I turn 18 to try and get a referral to a cardiologist and I just need a good GP. it's so frustrating. my first doctor didn't believe me and it was my neurologist who diagnosed me with dysautonomia and she's great (and actually a doctor that believes her patients)
@@Snickerdoodle.190 yes! I had to see many doctors just for my neurological problems. it's a long story but I have pernicious anemia (kind of? it's genetic but I was "patient zero" for my family but I have the intrinsic factor that absorbs B12 but I didn't have any in my system despite eating plenty of foods with B12). and I started having neuropathy pain but the nerve damage was so severe that I'm missing reflexes in my legs and it caused my dysautonomia along with fibromyalgia. I had to go through two doctors to find one that would even refer me to a neurologist and then the dysautonomia was triggered a few months later
Kaleigh Martin I hope you can get it figured out soon, age shouldn’t be a factor so I’m sorry they used that as an excuse. And there are functional problems with the heart that aren’t only bad, but are fatal, so not having a structural abnormality should never have been used as an excuse either, so again, I’m sorry you were told that and that was used against you. I really hope the referral goes well, many people like me now have a much better quality of life due to medication (my heart rate increase used to be about 75bpm on standing, but on medication is only about a 35bpm increase, which has made me feel so much better). Many pots patients have been treated with meds and now feel and are doing a lot better, so keep advocating for yourself until you get the help you need 💕
@@GeorginasJourney I am struggling with POTS since September 2019, since then my life is changed completely, i was having suicidal thoughts, but now i decided to live with it.
Justin it can get a bit better, keep hanging in there and trying new things to help it if you can! I also felt like that in the beginning, but it can and will get a bit better!
Does anyone have experience with eating disorders such as anorexia or bulimia causing POTS? I’ve had anorexia with bulimic tendencies since I was about 9 years old, I’m 19 now, and I started getting POTS-like symptoms when I was 14. They persist even though I’m active, have been in recovery or at least trying it, etc. I haven’t felt actually well since I was a young kid... there’s always some sort of fatigue or pain or palpitations that give me anxiety. I’m undiagnosed, but I’ve been told my ekgs look weird, my thyroid looks overactive, and my blood pressure is all over the place. My bpm raises about 40-50 (sitting will be about 50/60bpm, immediately upon standing it goes to 90-120)upon standing almost everytime, sometimes worse, sometimes better. No doctor takes my pots concern seriously and they just say it’s anxiety. Can anyone relate?
I'm scared because there isn't any doc aware about it in India. Im just suffering in silence everyday and its becoming worse. Docs keep calling it anxiety but I've ticked every criteria for pots.
@@jettagliturbo glad to hear that! I still have pots, & I have had it since I was around 17 (as far as I’m aware, it may have been a lot earlier, but I didn’t start fainting regularly from it until I was around 17). And I get red feet from standing or sitting, but my feet aren’t red while lying down!
@@GeorginasJourney Wow, thank you so much for telling me this. You have no idea how much I am impressed and the level of gratitude and admiration I have for you. You do not know how much resilience you have, you are so strong. I got your reply on Instagram, let's talk on there please, God bless you, and just know there is someone out there, there are many others I am sure but there is a guy out there who is cheering you on, who is so in awe of you, impressed by your strength and courage to keep fighting every day and is so amazed by your strength, determination, and power!!!!!!! God and Jesus Christ will heal all of us, I know it. He did not make any of our bodies with any sickness or ailments and will heal us. God bless you and talk to you soon. Daniel
My daughter has POTS she is 22. She needs to move home so I can care for her. She was sixk for 2 years before they found it. I don’t even know where or how to start caring for her. Please some advice.
POTS affects everyone differently, the best thing you can do is ask her what she needs the help with :) Common things I need help with are getting a glass of water & something to eat, drying my hair after a shower & any household chores that require standing!
Was just diagnosed with pots but usually only affects me when I lay down and I have to lay on my side cuz I get sleep paralysis when on my back and on my side is what true gets my pots the most(
that's really not typical of POTS, as the p in pots stands for for postural, so symptoms and tachycardia is typically best when lying down. I'd really recommend contacting your doctor or cardiologist about this to see if there is anything else going on
Florinef is fludrocortisione, I’ve got a few friends who are on it and it really helped them 😊 Atenolol is a beta blocker and has very similar effects to propranolol, which I take and has given me a much better quality of life 😊 You have nothing to lose by trying them- I’d say to try to give it a week to see how it goes, if you have any side effects, you can always just stop it. But if you don’t try them, you’ll never know. It also could be a good idea to try one for about a week and then add the second one, that way you’ll be able to you‘ll be able to pinpoint which one you’re having problems with if you have any side effects!
@@GeorginasJourney I was prescribed 25mg once daily for pots however I cut it in half to see and the first half was fine, 98/79 bp. hR controlled for the most part however I didn’t really do much today but I was wondering if I should take the other half like every 8hrs?
@@gabriellebecerra1690 unless it has an indented cut line on it, the active ingredient isn’t necessarily even distributed in the tablet, so I’d recommend taking the full tablet as instructed, or asking if you can get lower dose tablets if you feel like you need them. I take midodrine to counteract the effects of beta blockers on my BP, but florinef could have a similar effect for you, assuming the results you mentioned above were about the atenolol
Maybe I'm overanalyzing, and I'm sorry if I am... About what you said to which you added "nobody needs to know about it." Why would that even be an issue? If you need something, whether or not it's because of a disability, who cares if someone sees it? Heck...maybe it could even prove useful to someone who sees it. Admittedly, I do have one exception: dentures. Maybe I'll get used to seeing them at some point, but so far... *shudder*
Bert Visscher it’s not an issue for me, but it is for a lot of people, especially when they first start adjusting to their new adaptations, so it’s an important point for those people. Both my friends and family have seen all of my mobility aids (since I live with both at different times of the year), and although it doesn’t phase me at all now, it would have when I first got sick
Georgina's Journey the cardiologist gave me metoprolol but honestly I don’t want to be taking those pills ... I read that you have to take them forever!!! I don’t want that I’m scared tbh I just want to start a good diet or something before taking any medication
Araceli Rebollar you’re holding yourself back by not taking them. Metoprolol isn’t a hardcore medication, so to speak, idk how to describe it but it’s so mild that all sorts of doctors prescribe it all the time. You don’t have to take it forever, whoever told you that is wrong. If you feel better and no longer need it, you can come off it. Or if it’s not helping you, for example, you just stop taking it. There’s no risks with dependency or withdrawal or anything like that since it’s so mild and safe. You’ve got the option to potentially make your situation better with that, it’s only you who’s stopping yourself.
Zoroqt ML but it depends on the cause of it. There are probably some cases where it might help. But if it’s caused by a genetic condition like EDS, then no exercises won’t cure it
@@GeorginasJourney people with pots are low on vitamins and minerals: sea salt , B1 , Magnesium , Zinc , B12 , Iron , Omega 3 , Vit c , iodine if you buy magnesium malate or glycinate supplements you fell much better , i bought b1 supplement but they gave me diarrhea so i just eat sunflower seeds and pistachios for b1
fffds1 you can’t generalise people with pots like that. I’m not deficient in anything. I only have pots because my blood vessels are too stretchy and don’t contract properly, nothing to do with my vitamin and mineral levels. And this is the case for everyone who has pots caused by a connective tissue disorder, which is a huge percentage of cases
@@GeorginasJourney when you stand up your heart beats faster but beats harder too? if yes you are low on magnesium you should try high doses of vitamin c (3-6g per day) , vitamin C heals the incurable if you are not low on vitamins and mineral the only thing that probably can help you is auto-hemotheraphy ua-cam.com/video/5AFovKm-XAw/v-deo.html&t
Hello who did you visit in India? I'm tired of the doctors saying I'm just suffering from anxiety and keep recommending me psychiatrists! My mom dad keep believing these docs and keep telling me it's all in my head, while I struggle to walk in my house holding doors and walls trying to not fall down and drag my body around since last 5 months
Hey! I have some serious questions I have no resources right now if you could dm me on instagram id appreciate it @alexandranooch I just got diagnosed with POTS except im skeptical given the extreme nature of the shortness of breath and tachycardia while sitting thank you
I always wonder what on Earth they mean when they say you can “grow out of” pots. Wtf does that even mean? How are they getting that info? Are they diagnosing patients with pots and then telling them they’ll grow out of it and then assume they’re correct when that patient doesn’t come back to them?
Because they don’t look for the cause, but rather the symptom regulator ( aka medications). In my case I was severely deficient in b1, vit D, unfortified nutritional yeast, calcium, magnesium, iron. It took me 1.5 years to get better. Heart palps, POTS, loss of muscle mass, crashed autonomic nervous sys , debilitating anxiety and panic attacks, fluctuating Bp all regulated themselves slowly but surely. EDS is horrible but has triggers…
My doctor told me that their patients get diagnosed and then usually don’t come back to see them, and he assumed this meant they had grown out of it. As someone who very much still has it, but who hasn’t been offered an appointment for a couple of years, my guess is that it probably just looks like people are growing out of it because they’re not being offered follow up appointments
@@GeorginasJourney I am so sorry this happened to you. I don’t mean to put the blame on you in any way, just a suggestion to look for maybe an integrative doctor? At my lowest point last year, I found that my acupuncturist, my chiropractor and my integrative medicine doc were the ones that helped me keep my sanity and ultimately get better. Somehow docs that see the body as a whole organism and not just try to treat a part of it, are more helpful in my case.
@@GeorginasJourney I understand. I’ll be 40 in a few months, but was forced to withdraw my pension prematurely and I’ve spent most of it on doctors, supplements and trying things. Kudos to you for doing research and connecting with us over the internet. You will find an optimal solution!!
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The fatigue is simply horrible. 3 years of doctors telling me there is nothing wrong with me. Finally one doctor found POTS was the answer for the Fatigue, pins and needles, anxiety and depression. To who ever is reading the comment let’s beat this together
Perezident Tv so sorry you went through that, it’s such a relief to finally know what’s wrong isn’t it! It all starts to get better from there, keep hanging in there! 💪🏽💕
Georgina's Journey - was depression an issue you had. Like when blood wasn’t circulating properly did you feel very depressed with Brian fog?
Perezident Tv I felt very down due to my circumstances, but the lack of circulation and brain fog didn’t make me depressed
Georgina's Journey I feel the same way. Like “why do I have to go through this” I’m sorry but I go Monday to get my medication. It’s blood pressure pills beta blockers. Did you take the same and did it help? I pray to god that helps
Perezident Tv blood pressure pills and beta blockers? Or just beta blockers? Yes, as I said in the video, both help me
Love this
It took me 5 years, 7 different cardiologists, who knows how many GP appointments, but finally at the beginning of this year on my 7th different tablet I got the relief I was looking for.
My life has been turned around, thanks to one GP. I've had a crazy year, qualified as a swimming teacher (and absolutely love it) met lots of new people and I'm finally on the way up.
Looking back at all the tough times, it was worth it. There were days I don't know how I even functioned and fortunately those days are in the past
Whatever your story, and whatever your situation, never lose hope. Never stop trying 💪
Kurtis I loved reading this so much, thank you for sharing! So happy for you that you’re finally doing better after all of that perseverance, it really does pay off, doesn’t it! :)
@@GeorginasJourney when you mentioned you went through a similar thing I could relate to it so much. Life is tough, but yes it definitely does pay off. Perseverance always wins
Kurtis really sorry you could relate, but so happy for us that things seem to be getting better now 😊
@@GeorginasJourney POTS warriors for sure 😂💪
Kurtis definitely 💪🏽😂
I was bed-bound for three years, due to my hEDS - combination of the pain, fatigue, and POTS from it. Calf compression sleeves plus a cocktail of Catapres, Cardura, and Adcirca fixed me up really well. Catapres (generic name Clonidine) is emerging as a major help for many people with EDS-related POTS, since it increases blood volume and reduces the overactive sympathetic nervous system response that's so common in EDS people.
After getting my compression calf sleeves, medications, and was finally able to put on better muscle mass, I went from bed-bound to walking for 40 miles nonstop during a cancer fundraising event.
Are you recovered now?
@@TheBushRanger. Yes. Adding Pyridostigmine to treat the slow digestive issues and to further treat my POTS and fatigue was the miracle for me.
What a shame that we have to go onto all of these medications though. Because in time, what nasty side-effects might they all have...? 😞
I've just started on Lifewave patches - so I'm going down the now natural route. I'm gonna see what happens with those instead in time 😉
This was very helpful. Thank you so much! I was just diagnosed 2 days ago. My first POTS attack was 3/1, and was bed ridden at home since 11th. I was in & out of the ER 3 times, thinking it was my heart. But cardiology came back that I was 100% healthy. Wish everyone the best here!
I'm happy to hear you found it helpful, and I hope you start feeling a bit better soon! I found being undiagnosed by far the hardest part! It's slowly going to start getting better from here :)
I had this exact experience as well! I was diagnosed with POTS over a year ago but did not really have an issue with my heart rate. This past week I had an episode and I was so so nervous my heart was not functioning correctly, and I’m only 23. I kept going back to the ER every time I felt something different bc I was so scared but they gave me the same answer - heart was completely healthy. Now I’m adjusting to medications (I’m on a very low dose of metropolol and still working through the correct timing/dosage). I’m hopeful but still anxious.
Thank you soo much. I am watching this from my hospital bed right now. My doctor thinks it's POTS but she want to eliminate anything else before she say for certain that it is pots. They did all the testing and now they are adjusting my meds. I love all the tips you gave. You give me hope. Thank you very much for making this video.
Sounds like this is the start of things getting better for you, Barbara! It takes time to figure out what works, but you can start trying things now that you know what’s going on, I really hope things get better for you from here, I have a feeling that they will ☺️
@@GeorginasJourney Thank You🤗
Hi, you are so wholesome. Thank you for putting hope onto the internet. I'm in USA, and doctors won't listen, and I can't afford the thousands of dollars to keep going back over and over. I've been trying for 4 years. I wish I could guarantee somehow that they would listen and it won't be a waste of money. But maybe it's worth persistence, if I can improve like you have.
Hi lovely, thanks for your lovely words ☺️ My main advice if doctors aren’t listening is to go to your GP/family doctor , tell them about your heart rate fluctuations & ask if you can try a beta blocker. I think this is the only pots med that can be prescribed by a GP, but it’s often a good place to start with treating pots if you can’t see a specialist &/or are struggling to get diagnosed. Keep me updated with how you get on if you’d like to, there is hope that it can get better one day 🤞🏽I also have a video on some natural pots remedies that may be helpful in the meantime too. Keep persevering!
You are right. Doctors here in the US won't listen. But, Vanderbilt University Medical Center in Nashville, TN has an Autonomic Dysfunction Center, where they are considered one of the nation's leading experts in dysautonomia or autonomic dysfunction. It's good to get a referral for an appointment but you don't have to have one. They do accept insurance. Google them. I hope this gives you hope. Best of luck.
Prayers for you! America is a HARD place to live in for health care 😞 (I'm in Australia, my partner/caregiver was from England originally - but he passed away suddenly), and he used to say to me that the health care system in America is like a third-world country. He was right 😞 I really wish that things would change over there for you x
Love your story! It’s not always a boom change for people and people need to hear that. I spent a long time not even knowing what was wrong with me, just that, “ooh yea I do that when I stand up too fast!” when people would be like ARE YOU OK!? But as it got worse and bedbound me, we knew we had to search for answers. Luckily, shortly after my EDS diagnosis, my one doctor, who is knowledgeable about EDS and comorbidities, was like, you have POTS and here’s a doctor that specializes in it 🙌🏻 I was also lucky that most of the standard suggestions do a lot for me (6 grams of salt a day, I mix my own special drink that took some time to get used to but now I don’t even taste the salt, compression garments (which is catch 22, helps till I overheat👍🏻), and doing the morning thing like you do). After several months and heading into the summer, we knew I would need more than that. Midodrine has helped sooo much! So I guess what I’m saying is, don’t give up ever. Sometimes it takes a lot of different things. We spent a year after diagnosis finding just the right amount of things that worked, and some days... they still don’t. But overall, I feel like I can be “normal” (what is that anyways!?) and enjoy my life more. It is very dark feeling stuck to your bed, but even then, there are things and help to make that feel better too. ❤️❤️❤️❤️
Cheylynn17 all of this is so true, I hope other people read it too! Yeah it definitely wasn’t a sudden change for me, but looking back, I’ve now made some really significant improvements :) Glad you’re doing better and have found things that help you too!
So glad you're feeling a bit better, i believe in time your body will continue to adjust. Last year my pots was comparable to yours except my anxiety and depression was so bad that i couldn't eat or sleep. I got back on an antidepressant and it helped quite a bit. Over a few months with the proper care and what exercise i could do, it went away completely. Now due to reckless behavior it came back but pretty mildly (80-90 bpm resting, 110-130 standing and walking around) i don't get lightheaded or pass out and can eat and sleep. I can also do quite a bit of exercise. Anyways, I'd like to point out that for those who don't have an underlying condition like an autoimmune disease or physical condition which directly affects your circulation, a psychiatrist may be of great help, (not saying that it's all in our head) chemical imbalances in the brain can certainly affect the heart rhythm as well as vascular function. And there are many different psyche meds that can correct that. Try to ignore the stigma behind it. Sorry for the long comment but I'd like to say you're amazing and a great role model. When i was at my worst i remember finding your videos and wondering "how is she even smiling" it gave me hope. Thanks so much and God bless.
EZ Duzit I’m so glad you’re doing a bit better now, but sorry you went through so much! Some antidepressants are actually known to help with pots regardless of mental state so that’s a really good point! & if it helps both, that’s even better :) Gosh thank you so much, that means so much to me! I hope this finds you on a good day :)
@@GeorginasJourney the beginning is rough because you don't know what's happening, and i had doctors that had to google POTS in order to understand what i was talking about. But with education and the right steps POTS and IST can be manageable. Anyways, you know what time it is already lol i hope anyone who's struggling finds your channel.
EZ Duzit that’s so true! Thank you so much!
I had my son March 24, 2019 a week later I collapsed. I have been bed bound since. Your the only other person I found who had this severe like me. I havent been able to sit up at all or hold my son. I missed his infant stages. My mom and grandmother and sisters take care of us both. I feel like hes not even mine because he prefers them over me. I know its cause they can stand and hold him but it still so painful. My son is learning to walk and run and Im missing it all cause I cant leave the bed or even sit up. I tried the medicine but it made my heart rate fine when i try to move but I still pass out and have seizor like episodes. They made me feel really bad when I go to bed. I feel so useless especially for my son. With the corona the tests have been put off even further. Thank you I really appreciate this. You made me feel alot better. You are the only one I found who has had pots where its close to mine as far as being bed bound for awhile.
Destiny Mignogna Hi Destiny, you’re not alone. I relate to what you’re saying as I was in the same boat in terms of my symptoms and the first medication I tried didn’t work for me either, but as I said in the video, there are a few options so don’t lose hope just because one didn’t work, and also it can get better again over time (for me it took 2-3 years of being horrifically bad, fainting and collapsing everyday just from sitting up, but then it started getting better!), once all this corona stuff has settled, I hope you can get more tests and try more medications to find something that helps in the meantime!
@@GeorginasJourney Thank you I do appreciate it. Also thanks for sharing your story. I hope I can get to the point where I can sit up at least and share mine. There needs to be more awareness about this disorder. I live in Las Vegas, Nevada in the USA and we dont have the proper testing for me out here. They need to send me to California. It took 4 months to finally get them to start working on it. That was 10 months after I collapsed. As soon as I was gonna make the appointments the corona happened and now I cant. Its crazy how quick that virus even spreaded. The last year doesnt even feel real to me.
Destiny Mignogna are you sure they aren’t testing you for other things? POTS is the easiest condition to test for as you can even do a poor mans tilt table test if necessary, all you need is a pulse ox which is one of the most basic pieces of medical equipment! Hopefully they’re sending you for much more thorough and extensive testing (when you are able to go) and you’ll be able to access more treatment options for whatever they find :)
Destiny Mignogna I’m so sorry to hear you go through this. I also have seizures from my syncope. What has helped tremendously with that is medical marijuana. That has helped me be a lot more functional. I was diagnosed with pots, syncope and hypotension a year after my daughter was born and it was very difficult. It took four years of trying different medications until I found medical marijuana. It’s been a game changer for me. Hope you start feeling better soon!
@@GeorginasJourney I did a tilt table but without the blood work or adrenaline test at the same time. This state doesnt have that. They test me for stuff in my head the found a patoratory tumor but its to small to do anything they said so they leaving it. The did a nerve test with needles but thats ok. They wanna send me out of state cause here they cant test much. So i have to wait for the corona virus to be over before they can send me somewhere else.
Georgina, you are an absolute angel! Thank you so much for this video and your others on POTS. I just had my diagnosis confirmed hours ago. Your video was so incredibly supportive and encouraging. You are such a breath of fresh air!
Thank you so much for sharing your experience and knowledge and helping expectation-set that this can take a couple of years to see improvement.
I just recently discovered your channel and will be watching more of your videos soon. It looks like you are on another healing journey at the moment. Sending my support and best wishes to you on your road to improved health. ✨💜💫
Hope things are going as smoothly as possible for you, Jen 💗 Thanks so much for this lovely comment, it’s really made me smile this morning ☺️
Thank you for making this video! Dx'd Feb this yr & bedridden x4 months. After mult meds was put on Ivabradine and made a huge difference, but needing to play around with doses bc I got to the point where I was exercising daily 20-30 min + 1hr PT x2/wk , driving, small errands so smaller doses weren't working as well. At my best so far I could walk 1/3 of a mile and 13 min/day on my bike before getting symptomatic. Had some setbacks lately and it's encouraging to see you getting better! Learning to be patient has been my biggest battle.
Danielle H. You’re welcome! I’m so happy things are getting better for you too! I know we’ve got a long way to go still but all of your progress is amazing! 😊 And that’s so true, I’m still learning to be patient too 😅
@@GeorginasJourney Thank you! Yes I'm constantly trying to learn more patience but my gratitude journal definitely helps put me in a positive mindset :). Have you ever tried a mini exercise bike/foot pedlar? I use it a lot especially on bad days when I can't get on my bike- so when I'm watching tv/on the couch I'm still working my legs and that's surprisingly helped a lot bc I can do that longer compared to the actually bike. The one I have is so you can alternate between using your arms and legs!
love your channel and your content! ty for advocating for so many illnesses ppl don’t even know about ❤️❤️
Sylvie Meadowgrove thank you so much! 💗💕
I was just diagnosed with POTS yesterday and found your videos today. I want to thank you you are very helpful in helping me understand this. I thought my problems had to do with my heart because I have had a triple bypass and 3 stints. My cardiologist diagnosed POTS yesterday and at least now I have an understanding of what is going on. I have been put on a low 20mg dose of blood pressure medicine as i do not have high blood pressure. When you have heart problems they tell you to stay away from salt but In my case, It seems I need it because my blood pressure is normal. Thank you so much, Georgina, for your help I will be watching more of your videos.
Robert Calaway you’re welcome Robert, when you say a blood pressure medication, do you mean a beta blocker? As they affect blood pressure, but I’d imagine you were primarily put on it for it’s effects on lowering heart rate. POTS is actually an autonomic condition (though it affects the heart), and so anyone with POTS is advised to have a lot of salt so that the body retains more water in the blood and thus helps with blood pooling and other POTS symptoms. I hope you find my other videos helpful, I have one on a channel called ‘Georgina Reads’ called Tips for Living with POTS which may be helpful too.
@@GeorginasJourney propranolol 20 mg
Robert Calaway okay, yeah that’s a beta blocker that’s really effective for lowering heart rate so you would’ve been put on it to lower your heart rate
@@GeorginasJourney Thank you for the advice and encouragement Georgina. Remember Jesus Christ is the one who created all of us and all creation was made by him and for him. It is not about us it is about him. Always love and trust the Lord.
Robert Calaway thanks Robert
I actually got accommodations in college to start classes later in the day so I can take my time getting up in the morning. I had been thinking of it as like "oh POTS symptoms are too bad for me to get up right away" rather than a preventative measure so it's neat to hear that it actually helps throughout the day as well!
And getting a shower chair was a life-saver for me. I also try to use lukewarm water at most for my showers and aim for cold water bc hot water makes it so much harder. Showers in the winter are way more difficult than showers in the summer! I also try to drink water before taking a shower and have some nearby so I can sit and drink right after showering. Also, the way my shower is set up allows me to turn it on and off and adjust the temp without standing up which is super helpful too
Riley Hartmann sounds like you’ve got it all figured out! I’m glad your college was accommodating!
@@GeorginasJourney Thank you! They've definitely been super helpful!
Love your videos
ThatBeccaKid it gets better from there Becca! Even ivabradine isn’t right for you, there are a few different meds you can try to start slowly feeling better! After getting diagnosed and finding meds that worked for me, my life improved so much! I still spend many hours of the day in bed, but am not bedridden anymore! 😊
@@GeorginasJourney Update: the ivabradine is amazing! Its the only medication thats done something for me. I sadly reacted to everything else :( So im only on ivabradine and still bed ridden unfortunately :c Im so glad you're not though!! Keep kicking its butt
ThatBeccaKid that’s great news! You might continue to see improvements, don’t lose hope! I started out only being able to sit up for 5-10 minutes at a time & very slowly worked my way up to being able to sit up for 2-3 hours a day :) The rest of the time I still have to be lying down in bed, but you have to start somewhere! You should try sitting on the sofa for 2 minutes at a time or something now that the ivabradine is settling your heart a bit 😊
Hey how are you doing now?
@@vissiv8614 I'm doing so much better! I can finally stand for a lot longer and walk for a bit! Ivabradine has been a game changer!
Great video, Georgina! At 55 I seem to be growing INTO POTS at the moment, but thankfully I don’t faint xxxxxxxxx
Penelope Polins née Meyer thank you! Oh no, hope it gets better again soon! xxxx
Me tooo 45 and growing into pots.
I need a minimum of 30 min to get my baring before getting out of bed. I use a shower chair. I eat betablockers (propranolol) plus extra salt and water. If I get a slump in the afternoon I take 1/2 teaspoon of salt with a big glass of water, it helps.
Tried CBD oil and it helped with My stomac problems but I don't think it did much for my pots.
Great video! Thank you ❤️
Linda-Marie Hamrin it’s such a big adjustment at any age, hope you’re okay and that it’ll settle a bit soon! Sounds like you’ve figured out a pretty good way to manage it though :) I’ll have to try your tip for afternoon slumps, I definitely get those too!
There are 3 types of pots. You could have the adrenal kind and we don't typically get the blood pressure drop or pass out
High starch lunch makes the afternoon worse.
Only just found this video but wow it’s so helpful. So many people have no idea what POTS is. Thank you 🙌🏻🙌🏻❤️❤️
Joshua Baker thank you so much! And you’re welcome, glad it’s helped 😊
and i LOVED the ending!!!!
Izzy Kornblau 😂😂
I’m so thankful for your channel. Thank you!
Nice video! Thankfully I only have a mild form of POTS which more or less allows me to get on with my day as usual - really makes me take a different look at my own situation when I hear how bad it's been for people like you. I really hope your journey to recovery continues!
For those with a milder form of POTS, I'd really recommend diet as a key thing to watch out for - cutting down as much as possible on carbs and sugar, and for me getting rid of caffeine completely has made a very big difference. Having some salt with every meal (but not too much) seems to manage the symptoms pretty well. Also I used to take propranolol every morning which helped a lot, but have since switched that to 80mg of pure lavender oil - doctors here in Germany were a bit suspicious of me taking propranolol and recommended this instead. It's called Lasea in Germany, think it goes by Silexan elsewhere, and honestly it's been fantastic. Calms my whole CNS down including heartrate, plus it's a natural rather than chemical treatment. Also gentle exercise (if you're up for it) helps massively. Plus it goes without saying, avoid stress at all costs - this does nothing but massively exacerbate my symptoms.
Either way I wish everyone a pleasant day and best of luck with this.
George Moore thanks, George!
Propranolol (a beta blocker) has been a wonder drug for me. I have all the symptoms of POTS, and whilst my GP isn't technically allowed to diagnose me on her own, she basically has done, mainly to save me from the stresses of referrals and hospital visits, which seriously increase my anxiety. (i've been in and out of hospitals since i was 14 and i'm just done with it) It's really improved my dizziness and i feel so much more steady in general, it's reduced my daily migraines/postural headaches to nothing (which personally, was my most concerning problem day to day), and it's even given me a little energy boost, a hard feat since I also struggle with Chronic Fatigue Syndrome/ME. Add to that its adrenaline-blocking effects, and my anxiety has also drastically improved. I spent a while getting the dosage right, I was originally taking it as and when, then my doc put me onto the standard 2 or 3 tablets a day dose and that reduced my blood pressure too much and i could barely stand up! I now take one 40mg dose in the morning, and since my POTS symptoms generally improve as the day goes on, added with increased salt and water and compression socks, i feel so much better. I'm still quite ill by healthy people standards, but i feel so much more like myself, and that's amazing to me. I'm not saying it's going to help everyone, but it's always worth a try as it has fairly minimal side effects for most people too. Wishing all my fellow spoonies well ❤️
This is almost exactly the process and the results I had from it too! So happy it's helping you so much!
Thank you for the video.
Can I ask? Do you notice an increase in heart rate and or breathlessness when raising your arms for example when clean your teeth or reaching above your head? My heart rate goes from 70-75 too 128 when standing but does it need to stay high to be pots?
L B you’re welcome :)
Yeah that happens to me all the time!!
You’d expect it to stay above 100 ish for it to be POTS from your resting rate
Remember there is also a diagnosis called "hyperPOTS" as well! Some people have different tachycardia thresholds as well.
@@DandyBeingTandi Can exercises Cure pots?
@@Callijon no, it can't. But it can help you not get deconditioned from inactivity, which makes you feel ten times worse. It's really hard coming back from that so something like bed yoga is even better than nothing, even if you don't feel like doing it!
Zoroqt ML there is not a cure for pots. There are treatments to make it where you can function in day to day life and can help with symptoms but there right now is not a cure unfortunately.
Thank you! This helped me soooo much. I haven't officially been diagnosed with POTS, but it is definitely the cause of my symtoms.😕
You’re welcome! Treatment is more important than a diagnosis anyway, so making the lifestyle changes and trying to get help with treatment is the most important thing!
Thank you for this informative, inspiring video. I am recently (finally) diagnosed, and always open to new tips and tricks to manage. Glad to see you doing better with your POTs! Stay strong!
Dermatillomaniac Hope this helped! I have a couple of other videos on my top tips for pots, on this channel and on ‘Georgina Reads’, hope they help! It gets better from here :)
Thank you so much, vor your good tips, sweet smiling and especialiy for your clean an holy Soul, with you are heliping other people to get new an better hop an better thinkings!
Rainer-JGS thank you! 😊
The propranolol didn't help my daughter. She is now on nadolol (+midodrine) and doing better. Not "good" but better.
usbpphillips thats good to hear
I can’t imagine going through what you did and others, wow! In 6 months I’ve fainted three times. I have only felt my heart really racing and had to lie down a few times, though my heart rate stays 100-120 usually. When I lie down I’ll get in the 70’s but as soon as I start walking or get up quick, it jumps up again. Awesome tips and good content as always. Hope all is well.
Tate Thompson Sorry you went through that, fainting at all is horrible, even if it’s only happened a few times!
Thanks!
Georgina's Journey it never happened before in my life, so it felt so weird. Can’t imagine fainting in the shower though like you, that’s so dangerous. First time I fainted I was watching a game, had some chips in my hand. When I came around, my dog was quietly eating the chips instead of worrying about me hahaha. Can you walk say for like 15 minutes at a time, line go to a movie with friends or shopping, or do you start to feel weak and faint?
Tate Thompson I’m glad you were home, but I can still imagine how horrible that must have been! Your dog’s priorities are funny though 😂 Do you get pre-syncope? That’s the worst part for me as I’m so dizzy, my head feels like it’s about to explode and I’m either on the verge of being sick or I actually am 😷I don’t tend to be sick when I wake up thankfully though, I know that’s common for a lot of people 😬 No I definitely can’t go shopping with friends without my wheelchair or wait in line as I would faint, but I’ve come a long way from where I was a few years ago when I could barely get from my bedroom to the living room and then couldn’t stay there for more than about 15 minutes as I couldn’t sit up 😬 Change and progress is all relative :)
Georgina's Journey it’s amazing the progress you’ve made and I’m sure a positive state of mind goes a long way. By next year I’m sure you’ll be even better off. That’s good you have your wheel chair, most places now are more accessible for them, here in the states anyways. My dog I feel only uses me for treats and toys, haha. My symptoms aren’t everyday, I mean like today I was in Salem (witch trials town) and was walking all day, hr was in the 140’s but felt fine. When I have fainted, yes I get dizzy and like I can feel my body giving out and no matter how hard I try to fight it, I still faint.
Tate Thompson I’d say 90% of the progress I made is due to the things I talked about in the video, being positive is great but I don’t believe it can make you physically better if you’ve got an underlying cause to your illness like a genetic condition (which is the case for me)
I’ve literally just heard about this, and I fit all of the symptoms. They’ve never been that consistent as they are lately, but it was eye opening! I never knew this was an issue. I just always took it as something made me faint or get lightheaded. I just had no idea...thank you for your video!
swtpersianangel you’re welcome :) If you search ‘how to test for POTS at home’ you can watch my video which will show you how to get an indication of whether you have it or not- you can’t tell from symptoms alone & I urge you not to self-diagnose. Many people find it helpful to get a clear indication about whether they have it or not before they see a doctor :)
Georgina's Journey thank you very much! I’ll have to take a look and watch your other video 💕
swtpersianangel :)
Great tips! I’m lucky to be in a good stretch now :)
Fiona M thank you! & I’m so happy to hear that you are too!
Thank You for You Sharing, I’ve just been diagnosed with POTS & I’m on Beta Blocker , I’ve only been on the medication 2 days, I Pray it helps, The Bed has been my life for 3-4 yrs.
Just replied to your other comment :)
You give me hope
@@ANDREW345JJ2 we’ve got this 🫶🏽
Thank you for sharing your experience...very helpful 👍💜
You’re welcome! Thanks for watching 💕
I have well managed pots, but my symptoms get so much worse after being ill.Is it the same for you?
Steph L yes, that’s completely normal! Happens to me too
@@GeorginasJourney thanks for your reply, at least I know its normal, well for fellow pots sufferers anyway
Me too
Steph L your welcome! Yeah, good to know you’re not the only one :)
When you had POTS? Did you get woken up like something scared u. And your catching your breathe. Because that happens to me. And I want to know if I have POTS. And did the medication really help? Also did exercise help? Sorry I have so many questions! Also we’re you always tired? Also I think I have POTS, but I don’t faint. Does that mean I have POTS still?
Yarely Yamulet I still have POTS, it’s just not as severe anymore. I would wake up like that when my alarm woke me, but I don’t remember pots itself ever waking me up, as it’s postural and should be at its most well controlled when you’re asleep/lying down. Yes, my medication helps- I have a video showing that- it’s my second to last one that I uploaded. & I have a video on how to test for pots at home on my other channel ‘Georgina reads’ that can give an indication of whether you might have POTS, and then see your GP if you think you do, although would probably be best to see your GP either way
Georgina's Journey Thanks!
I go through this. I was diagnosed with dysautonomia not necessarily pots @yarely yamulet
AHope Wade I have dysautonomia/autonomic dysfunction as well as specifically having POTS
@@GeorginasJourney thank you for your vidoes. I took a hot bath lastnight and I body went in to overdrive. It was def a rough night. I'm learned that tumeric and black seed oil are anti inflammatory herbs. They help me. I'm suler dizzy driving. Those help me cope. I'm not on medications
Hey great to see that u r recovering well.....but i have a big doubt to clarify georgia....when i stand up my bpm will go from 80 to 130 and comes down without staying there for a long time like itll be coming down in few seconds..and i dont feel any dizziness and all....i attached holter monitor too and the report said nothing....what do u think...bpm rising is the symptom of pots without diziness ?
jawahar venkat thank you! And if you’re not dizzy and your heart rate comes back down quickly after, then it doesn’t sound like POTS, what sort of numbers does it come down to?
Like itllgo upto 130 from 80 stays there for 5 secs amd comes back to 120 then 113 and stays at 113 .....and gradually reduces
And even if i feel dizzy once in a blue moon it only lasts for 5secs or something and itll be normal again..but most of the time no diziness
jawahar venkat honestly, if you’re not symptomatic, I wouldn’t worry about it :) Although 80-113 is over the 30bpm rise, so you may have it, but still, if you don’t feel ill from it then there’s no reason to worry or do anything about it :)
Thanks gerogy
loved this video!!!
Izzy Kornblau thank you!
I could not take beta blockers because my blood pressure was so low to begin with and taking that on top of it, made it worse. I felt even more faint. I also tried midrodine too but it hurt my stomach and my doctor told me that I couldn’t take it long term anyway. I am not certain what could help me other than resting constantly, but unfortunately, that doesn’t earn money. I have EDS, POTS, CFS and Hashimoto’s. Fatigue is my main symptom.
Emily Bradley ivabradine or fludrocortisone would be good options to try next. The first few meds I tried didn’t work for me either and even the ones I’m on gave me side effects to start with, but you have to be willing to give the meds a go and stick with it for at least a week to see if the side effects settle down. In terms of earning money, you can apply for disability benefits if you are unable to work. Hope this helps.
Georgina's Journey thank you for the suggestions! Wish you healing.
Emily Bradley you’re welcome, let me know if you have any specific questions!
Hi. I have many signs of tachycardia and diagnosed blood pressure. I have a migrena and chronic gastritis and i do not eat many salt. I take beta blockers but it does not help. My doctor has changed my migraine and pressure therapy 4 times already. I'm still not well. My blood pressure is constantly changing but the heart rate is always high. Blood pressure 160/85 and heart rate 110 and then my head hurts. But in a short time it starts to get bad and my blood pressure drops to 110/55 and my heart rate is 140. Then I feel dizzy, buzzing in my ears, my stomach bloating, and can not breathe, I feel a strong heartbeat and chest pain and fatigue. I can not lie down for more than 15 minutes as it starts to get bad and I can stand up to 40 minutes before the first symptoms. I have been struggling for over 5 years with these symptoms. I am 19.
Can loss of weight be associated with POTS?
Is POTS treated with medication alone? Because of the frequent migraines, any medication has a bad effect on my stomach.
I don't know what to do when I'm weak and I'm dizzy? Because it happens to me constantly.
Can POTS be detected by lumbar puncture?
My doctor still don't know what's wrong.
I love all your video.
Petra Filić weight loss can be associated with POTS. POTS is treated with medication &/lifestyle factors such as drinking more water & eating more salt, using a wheelchair in severe cases, etc. No it is diagnosed using a Tilt Table Test- which you can google, or search on UA-cam for more information about that. If you cannot lie down for more than 15 minutes- it is unlikely to be POTS as pots is tachycardia associated with postural changes such as sitting or standing- POTS patients would not be expected to be able to tolerate standing for longer than lying down like you described, please let me know if you have any more questions, I hope you can get some help to make you feel better
I'm just now improving, i got diagnosed 2.5 years ago, but had to wait a year and half for diagnosis before that. I was on bedrest half a year, had to give up college (I was a junior in my second semester), and had constant ER trips. I'm trying to work part time now, its still a harsh struggle, but I'm slowly adjusting. I'm looking into new meds since my last one didn't help and caused a severe deficiency.
Samantha Clostermery sounds like we went through a similar thing, being able to work part time is a huge achievement after all you went through! I hope you can find something that helps you even more
@@GeorginasJourney thank you!! I hope we can both improve and accomplish our goals💝
Samantha Clostermery we’ll get there! 💕
@@GeorginasJourney yes we will💝
I am going for my first TTT which is terrifying
InfernoFire oh good luck! When is it?
Georgina's Journey Wednesday
InfernoFire I’ll have my fingers crossed for you that it goes as smoothly as possible on the day and that you get the answers you’re looking for!
Hey I’m 31 old guy, been struggling to to find out my diagnosis. I did the old man tilt table test. When lay down my heart rate 85-90 when getting up it’s 110-115. My cardiologist said I have pots and prescribed me ivabrine and propranolol. My blood pressure is usually normal when sitting down and heart rate is still in 89 avg. walking 108-118 on most days. I’m having a hard time figuring out if this is pots or axiety. Do you think trying these meds would help me at all? I have been hesitant for 3 years and seems like my symptoms getting worse. I know your not a doctor but would love some advice ❤
Hi there! Honestly, I don’t think it’s anxiety, I think it is pots. Is there room to up your doses on the meds? That could be easier on your body than adding another as those two are two of the best for lowering heart rate. You just would want to monitor your blood pressure if your dr approves increasing the propranolol, or look out for chest pain & visual changes (like light sensitivity) if dr approves increasing the ivabradine (& certainly don’t increase ivabradine without the go ahead from a dr). This advice may be unhelpful if you’re already on max doses, but I do know the midodrine & fludrocortisone typically have more success in stabilising blood pressure, but it could be worth asking about still & worth a shot!
@@GeorginasJourney thanks. I actually only tried a beta blocker in the past, and I was micro dosing it. I haven’t tried increasing it since I haven’t been on it since then, but I will consider the propranolol to see if that impacts my blood pressure too much because normally it’s 120/70 but heart rate is usually high. If it does then I can definitely consider ivabrine and start with small dosage my doctor said 2.5 mg to start then 5 mg, which are the low dose.
Ah okay, sorry I misunderstood, I thought you were already taking the prescribed medications, but yes, I definitely recommend taking what you’ve been prescribed! You can start them one by one to monitor side effects & and ease your body into it 😊
@@GeorginasJourney thank you so much. Your videos help a lot. ❤️
I’m so happy to hear that, thank you so much ☺️
How do you differentiate between fatigue from ME/CFS and POTS? I've been feeling unwell recently, but I can't tell which condition is flaring up (or if it's both)
Millie it is quite hard to tell, but I have a pulse ox heartrate monitor, so one way is to keep an eye on those readings, if you’re tachycardic a lot it’s likely to be POTS, if you’re not very tachycardic except when standing, then it’s likely ME. Also dizziness, light headedness and palpitations can occur in POTS flare ups, so the presence of any of those symptoms can indicate a POTS flare too. That being said, it doesn’t help to overthink it too much anyway, I just listen to what my body wants (where possible), acting on instinct, such as lying down when fatigued, is usually the right thing to do :)
@@GeorginasJourney thank you!
Do you know where you got the small black wrist brace you wear a lot? I’ve been looking for one as I don’t want to wear my regular bulky one to class
Fiona M possibly PhysioRoom.com, but just search wrist support online and loads of options will come up!
I stay in bed on no school days. I use a shower stool too.
Sophie Amarant that sounds like a good idea!
I was just diagnosed with pots and have had to use a shower chair because the symptoms get worse in the shower
I’m three years in and my doctors still don’t know what’s wrong... I have many signs of tachycardia but I need a diagnosis...
Link in the Grace I have a video on how to get a POTS diagnosis if you think you have it, it was a few videos ago now but have a look through my channel for it :)
Georgina's Journey I just went on a watching spree of your channel haha I’m currently in college and I can really relate to you, I’m in bed now actually and it’s 4pm lol I’m a collegiate athlete on a scholarship.. I started feeling bad my freshman year of college and now I’m almost 22 so it’s kinda rough...
Link in the Grace ah that’s so tough, are you nearly finished with it now? Sorry I don’t really know what a collegiate athlete is 😅
Georgina's Journey haha yeah I’m a senior in college, i’ll be done in like 5 months. Also a collegiate athlete is someone who is really into exercising (an athlete) and I am getting money by my university to perform for them. I haven’t been able to do that because I got sick. It’s a tough time especially when doctors say I look fine but I’m not lol.
You are amazing you really are
VERONICA CHRISTOPHER-FELLOWS thank you so much!
Thank you your video was very helpful I’m subscribing 🤩🤩🤩🤩🤩🤩🤩💖💖💖💖
Thank you! ☺️
I've found your channel b.c I'm looking into pots for my soon to be fiance. She's been in and out of er visits over the 3 years we have been together and I'm truly worried. She was diagnosed with pots and I've been looking around forever how to help her out b.c she's truly a doll and I hate seeing her get out of breath and feeling weak.
That’s so nice of you to be looking into it and trying to help her! Search ‘pots test at home’ as there’s a test she can do at home that will give her a good indication of whether she has it! I have a video of how to do it on your phone and there are also videos of how to do it with a pulse oximeter if you have one
@@GeorginasJourney thanks will do. She has already been diagnosed with pots a few years back. But they still treat it as a joke or its all in ur head kinda deal at the ER.
@@Odd__Thomas ah okay, I thought you meant looking into her possibly having it. POTS is uncomfortable & difficult to live with, but it’s not actually an emergency or dangerous for someone to have, so that may be why they don’t always take it seriously in the ER, as they are trained to deal with medical emergencies.
How are you now?? Thank you for your video!
You’re welcome ☺️ sadly not doing as well these days, but I still make videos every few weeks ☺️
hahahaha Georgie!!! That ending is gold! =)
Jim Jahey glad you liked it aha :)
I just got diagnosed with POTS recently, and the extra fluids and salt has not been helping me. I've been having chest pain really bad. Did you deal with that too? They're running every cardio test, and it's kind of worrying me. :/
Chest pain is fairly common with POTS, or it may be costochondritis (inflammation in your chest) caused by the high heart rates that POTS can cause, so I don’t think you should be worried at this point & it’s good that they’re looking into it for you :)
Hello! I’ve had Pots for about 2 years now. I started getting symptoms when I was 14 and I’m 16 now. I used to be so active and constantly moving and now I feel glued to my bed. People my age are able to go out for multiple hours on end and I feel so defeated. Does taking the medicine make you feel similar to when you were before Pots? How do you feel normal again?
I didn’t say I felt normal again. I explicitly stated at the start of the video that I feel better than I did before, but I am by no means completely better. I still use a wheelchair and spend a lot of the day in bed
But, with my medication, I’m able to go to university, for 1-2 hours a day, 4 days a week. I wouldn’t have been able to do that if I didn’t have my medication
How do you deal with hormonal fluctuations?? I get very symptomatic during ovulation and my period. Tried birth control and it actually made my symptoms worse
I use the progesterone only birth control pill and it’s amazing for me. It helped all of my hormone-related POTS flare-ups so much
Natural Progesterone cream
I have pots too, i was in midodrine and atenelol for more than a year already i took also sleep.meds,my symptoms are dizziness fatigue,insomia, anxiety, depression, coat hanger pain or upper depression..today i experience severe dizziness.. Pls help me...
the whole video was me trying to help. There is no cure, we can only try to make it get a bit better, as I explained in the video- I still have these symptoms myself, just not as badly as before. I feel as though I shared all of my information, experience and tips in the video, but do you have any specific questions ?
@@GeorginasJourney why others had cured their pots using neuroplasticity? So u think all the testimonies in dnrs youtube are all legit or true?
GRACE GEMINO I talked about that in my video ‘DNRS update for POTS and CFS’, that has a more detailed answer, but it basically depends on the cause of someone’s POTS
Georgina I have pots just like your described. I have gastoeperesis and possible mass cell. I lost 120 lbs in 8 months and I haven't been able to get help bc I can't even move barely or I freak out and almost die lol :( I feel like have no blood supply to my heart. I'm scared my pots is so triggered by my stomach I'll die. In trying to get treated but the aren't taking the gastric emptying scan serious and my blood pressure is alarming I can't calm down. I went t get psych evaluated bc the cop was an ahole an told me I need to be admitted and this has to end and my diagnosis wasnt even anxiety when I went😂 it was pots and sinus tachycardia. I feel like I'm gonna die bc lack of blood flow and insane blood pressure readings. I'm scared :( what if I don't make it in time to the initial Dr visit ..... I cannot calm down . Bless you 🙏🏻 I thought I was the only one who had it THIS badly. It feels like nothing helps the blood flow :(
Sorry you’re not doing well, what blood pressure readings are you getting? And what heartrate? Pots & sinus tachycardia are not normally deadly conditions, but if you tell me your blood pressure readings that will give me an idea of what’s going on
I’m not sure why a cop or psych was involved?
But yes, I used to feel like this for like 23 hours a day, thankfully now it is slightly better, roughly 20 hours a day that I feel like that now
@@GeorginasJourney with the other stomach stuff and my pots, chronic bedrest, BP is at a general all time alarming low whicj is alarming. It has been as low as 41 on the bottom number and one min later it was almost 200 or so. We called 911. This really started happening so much this week and I took it an hour ago it kept going super low and lower so I waited an hour or so about and it is hypertensive again. I have the most alarming numbers. It goes "deadly" low to "deadly" high. I called 911 again bc I felt like that was the end of my life that night and even to I said don't come I cam actually ok they came anyways and for the second time they told me I needed to be in a mental institution and I felt worse so I spent the night at mental outpatient er to get in the mental institution and I knew it was pots and my stomach diseases an chronic bedrest probably. And of course the diagnosis was not anxiety but sinus tachycardia and POTS. They PROMSIED me that it can't kill me and I haven't died in my sleep like I would think I would when my BP is lower but it keeps feeling worse and I do feel my heart stops beating it seems and I feel my body jump up and freak out and it saves my life seemingly. I dontrhijk it's cardiac arrest or stemi heart attack or whatever bc they didn't keep me long and it wasn't active very much well it was really high but they didn't see it go low bc they didn't check my BP in my sleep but we told them and they said my heart is cleared and the pots and other things can't kill me but I'm horrified with how low my BP is just awake and I guess I've been fine asleep bc I wake up every day nutim worries I'm gonna die today my heart keeps seeming to stop or nearly and my BP got so low for a while m mom made me stop taking it. I told her I need to go back bc all that's wrong and it's so bad my BP and blood flow but she insist not bc the Drs said I'm not gonna die even tho they didn't see it go really low :(
@@GeorginasJourney I told them it goes quite low as well as high tho, and somrtimes changes drastically in less than a minute. I'm so happy you are able to be somewhat better. This is awful and scary as crap
@@GeorginasJourney I don't expireence may symtoms when my BP is low but sees like my heart stops and my BP monitor scares me bc it went to 20 like twice and error while taking it but I was still alive and talking omg :( I'm a mess right now it's hypertensive when I took it.
Btw, I meant the reading was still undetected when the number hit 20 then said error. My BP is really really low and really really high tho horrific
Let me tell you my story, i had or should i say i think i had pots in 2012, every time i would stand up my heart rate would go up and this lasted for a year or so. But for the past years until now i feel normal, I go to the gym i lift and lift weights etc. what your opinion on this ? Im a male 29 years old
WorldGamingAssociation I’m so happy you’re doing well now! In some cases it does completely get better! Were you aware of if your heart rate was staying elevated on standing & by how much? That’s the only thing that could really indicate whether you had it or not, but either way, I’m so glad you’re doing better now :)
Mestinon helped me a lot
Are you from the US? I’m not sure if I’d be able to try that here!
I have POTS when I wake up I sit on the edge of bed for maybe 5 minutes before I stand
In my other pots tips videos, I explain how I sit up in bed before getting up too
@@GeorginasJourney thank you
my doctor won't put me on any meds for my POTS but it I'm so tired of feeling like this. I want to do things other people my age can do
Kaleigh Martin can you see a new doctor? Or even get a GP to prescribe a beta blocker? There’s no reason they should be denying you access to medication when there are options that are known to help
It can take multiple doctors unfortunately before you find the right one. I've seen four different doctors for my dysautonomia. The doctor I see now has done everything he could to help me and I've gone from homebound 4 years ago to currently about 80% functional. I hope you can get the help you need and deserve.
@@GeorginasJourney my issue is that I am not 18 yet (will be in 11 days that I'm typing this!) and I have to see pediatricians. My main doctor dismissed it as anxiety and was saying a bunch of scary stuff that wasn't factual at all. My mom's a nurse here in Texas and pushed for me to go to the Cook's hospital in Dallas where the pediatric cardiologist said that since nothing is structurally wrong with my heart that they didn't want to prescribe me any meds like a beta blocker. we're waiting until I turn 18 to try and get a referral to a cardiologist and I just need a good GP. it's so frustrating. my first doctor didn't believe me and it was my neurologist who diagnosed me with dysautonomia and she's great (and actually a doctor that believes her patients)
@@Snickerdoodle.190 yes! I had to see many doctors just for my neurological problems. it's a long story but I have pernicious anemia (kind of? it's genetic but I was "patient zero" for my family but I have the intrinsic factor that absorbs B12 but I didn't have any in my system despite eating plenty of foods with B12). and I started having neuropathy pain but the nerve damage was so severe that I'm missing reflexes in my legs and it caused my dysautonomia along with fibromyalgia. I had to go through two doctors to find one that would even refer me to a neurologist and then the dysautonomia was triggered a few months later
Kaleigh Martin I hope you can get it figured out soon, age shouldn’t be a factor so I’m sorry they used that as an excuse. And there are functional problems with the heart that aren’t only bad, but are fatal, so not having a structural abnormality should never have been used as an excuse either, so again, I’m sorry you were told that and that was used against you. I really hope the referral goes well, many people like me now have a much better quality of life due to medication (my heart rate increase used to be about 75bpm on standing, but on medication is only about a 35bpm increase, which has made me feel so much better). Many pots patients have been treated with meds and now feel and are doing a lot better, so keep advocating for yourself until you get the help you need 💕
You're so pretty girl ♥️
Justin thanks!
@@GeorginasJourney I am struggling with POTS since September 2019, since then my life is changed completely, i was having suicidal thoughts, but now i decided to live with it.
Justin it can get a bit better, keep hanging in there and trying new things to help it if you can! I also felt like that in the beginning, but it can and will get a bit better!
Does anyone have experience with eating disorders such as anorexia or bulimia causing POTS? I’ve had anorexia with bulimic tendencies since I was about 9 years old, I’m 19 now, and I started getting POTS-like symptoms when I was 14. They persist even though I’m active, have been in recovery or at least trying it, etc. I haven’t felt actually well since I was a young kid... there’s always some sort of fatigue or pain or palpitations that give me anxiety. I’m undiagnosed, but I’ve been told my ekgs look weird, my thyroid looks overactive, and my blood pressure is all over the place. My bpm raises about 40-50 (sitting will be about 50/60bpm, immediately upon standing it goes to 90-120)upon standing almost everytime, sometimes worse, sometimes better. No doctor takes my pots concern seriously and they just say it’s anxiety. Can anyone relate?
Can we get pots without any other underlying medical condition?
Yes, you can develop it as a teenager or after a viral illness (like a common flu or something)
@@GeorginasJourney I've gotten mine suddenly at age 25 without any prior illness or flu. Does that too happen?
I'm scared because there isn't any doc aware about it in India. Im just suffering in silence everyday and its becoming worse. Docs keep calling it anxiety but I've ticked every criteria for pots.
@@srujutanaik7263 I’d recommend looking into Ehlers Danlos Syndrome, that’s a common cause
Yes because it has to do with our Nervous System
May I share your story? Many people don't know what my daughter is going through
Of course! You’re more than welcome to share it ☺️
God bless you 🙏. Did you have blood clots? Did anyone have them?
I didn’t
@@GeorginasJourney neither did I that is wonderful how long did you have pots and what were your symptoms do or did you have the reddish feet?
@@jettagliturbo glad to hear that! I still have pots, & I have had it since I was around 17 (as far as I’m aware, it may have been a lot earlier, but I didn’t start fainting regularly from it until I was around 17). And I get red feet from standing or sitting, but my feet aren’t red while lying down!
@@GeorginasJourney Wow, thank you so much for telling me this. You have no idea how much I am impressed and the level of gratitude and admiration I have for you. You do not know how much resilience you have, you are so strong. I got your reply on Instagram, let's talk on there please, God bless you, and just know there is someone out there, there are many others I am sure but there is a guy out there who is cheering you on, who is so in awe of you, impressed by your strength and courage to keep fighting every day and is so amazed by your strength, determination, and power!!!!!!! God and Jesus Christ will heal all of us, I know it. He did not make any of our bodies with any sickness or ailments and will heal us. God bless you and talk to you soon.
Daniel
What if u have high blood pressure, would salty snacks be a good idea for me with POTS ?
You should talk to a doctor about that. Beta blockers and ivabradine could both be options for you though
My daughter has POTS she is 22. She needs to move home so I can care for her. She was sixk for 2 years before they found it. I don’t even know where or how to start caring for her. Please some advice.
POTS affects everyone differently, the best thing you can do is ask her what she needs the help with :) Common things I need help with are getting a glass of water & something to eat, drying my hair after a shower & any household chores that require standing!
Was just diagnosed with pots but usually only affects me when I lay down and I have to lay on my side cuz I get sleep paralysis when on my back and on my side is what true gets my pots the most(
that's really not typical of POTS, as the p in pots stands for for postural, so symptoms and tachycardia is typically best when lying down. I'd really recommend contacting your doctor or cardiologist about this to see if there is anything else going on
@@GeorginasJourney I still have episodes
@@GeorginasJourney I actually have my cardiologist appointment again tmw :)
@@SleepyCatLadyy hope they can help! It’s definitely worth telling them what you’re struggling with!
Anyone on atenolol and florinef? I was just prescribed these 2 meds the other day and I’m nervous to take it
Florinef is fludrocortisione, I’ve got a few friends who are on it and it really helped them 😊 Atenolol is a beta blocker and has very similar effects to propranolol, which I take and has given me a much better quality of life 😊 You have nothing to lose by trying them- I’d say to try to give it a week to see how it goes, if you have any side effects, you can always just stop it. But if you don’t try them, you’ll never know. It also could be a good idea to try one for about a week and then add the second one, that way you’ll be able to you‘ll be able to pinpoint which one you’re having problems with if you have any side effects!
@@GeorginasJourney I was prescribed 25mg once daily for pots however I cut it in half to see and the first half was fine, 98/79 bp. hR controlled for the most part however I didn’t really do much today but I was wondering if I should take the other half like every 8hrs?
@@gabriellebecerra1690 unless it has an indented cut line on it, the active ingredient isn’t necessarily even distributed in the tablet, so I’d recommend taking the full tablet as instructed, or asking if you can get lower dose tablets if you feel like you need them. I take midodrine to counteract the effects of beta blockers on my BP, but florinef could have a similar effect for you, assuming the results you mentioned above were about the atenolol
Maybe I'm overanalyzing, and I'm sorry if I am...
About what you said to which you added "nobody needs to know about it." Why would that even be an issue? If you need something, whether or not it's because of a disability, who cares if someone sees it? Heck...maybe it could even prove useful to someone who sees it. Admittedly, I do have one exception: dentures. Maybe I'll get used to seeing them at some point, but so far... *shudder*
Bert Visscher it’s not an issue for me, but it is for a lot of people, especially when they first start adjusting to their new adaptations, so it’s an important point for those people. Both my friends and family have seen all of my mobility aids (since I live with both at different times of the year), and although it doesn’t phase me at all now, it would have when I first got sick
Droxidopa & Propanol are the only meds that helped me!
That’s great 😊 are you outside of the U.K.? Droxidopa is rarely prescribed for pots here, if at all
@@GeorginasJourney Yes I am In Michigan in the United States!!
Salt water all day and sunlight. Eat less carb and keto. Gluten free and sugar. Just whole foods
None of this worked for me, but I’m glad you’ve found something that helps you & it’s always worth a shot trying things!
Vitamin b1 help to cured pots
Possibly in some people! But not all- it depends on the cause of POTS! There is no one size fits all cure!
@@GeorginasJourney yes you alright I discover I have low iron
You're correct because POTS always goes back to our nervous system
You're so beautiful and you seem so lovely!
Thank you so much!
Can we cope without medication?
Shelly Simmonds some can, everyone’s different. Depends on how you feel and how severe your POTS is
Georgina's Journey thanks
So.. are you taking any medication??
Araceli Rebollar yes. But what works for me won’t necessarily work for someone else. Any of the meds here are good options to try
Georgina's Journey the cardiologist gave me metoprolol but honestly I don’t want to be taking those pills ... I read that you have to take them forever!!! I don’t want that I’m scared tbh I just want to start a good diet or something before taking any medication
I’m tired of this tbh... how long you been having POTS?
Araceli Rebollar since I was around 17. I’m now 22.
Araceli Rebollar you’re holding yourself back by not taking them. Metoprolol isn’t a hardcore medication, so to speak, idk how to describe it but it’s so mild that all sorts of doctors prescribe it all the time. You don’t have to take it forever, whoever told you that is wrong. If you feel better and no longer need it, you can come off it. Or if it’s not helping you, for example, you just stop taking it. There’s no risks with dependency or withdrawal or anything like that since it’s so mild and safe. You’ve got the option to potentially make your situation better with that, it’s only you who’s stopping yourself.
Can Exercises cure pots?
Zoroqt ML generally no
Zoroqt ML but it depends on the cause of it. There are probably some cases where it might help. But if it’s caused by a genetic condition like EDS, then no exercises won’t cure it
@@GeorginasJourney people with pots are low on vitamins and minerals: sea salt , B1 , Magnesium , Zinc , B12 , Iron , Omega 3 , Vit c , iodine
if you buy magnesium malate or glycinate supplements you fell much better , i bought b1 supplement but they gave me diarrhea so i just eat sunflower seeds and pistachios for b1
fffds1 you can’t generalise people with pots like that. I’m not deficient in anything. I only have pots because my blood vessels are too stretchy and don’t contract properly, nothing to do with my vitamin and mineral levels. And this is the case for everyone who has pots caused by a connective tissue disorder, which is a huge percentage of cases
@@GeorginasJourney when you stand up your heart beats faster but beats harder too? if yes you are low on magnesium
you should try high doses of vitamin c (3-6g per day) , vitamin C heals the incurable
if you are not low on vitamins and mineral the only thing that probably can help you is auto-hemotheraphy ua-cam.com/video/5AFovKm-XAw/v-deo.html&t
My doctor said that saline therapy is for people who can’t drink
That’s usually the case in the U.K. I’ve only had saline in medical emergencies. That’s why this video really isn’t focused on that
Here in India almost everyone uses a stool in the shower 🤷🏾♀️
Really? I didn’t know that!
Hello who did you visit in India? I'm tired of the doctors saying I'm just suffering from anxiety and keep recommending me psychiatrists! My mom dad keep believing these docs and keep telling me it's all in my head, while I struggle to walk in my house holding doors and walls trying to not fall down and drag my body around since last 5 months
Hey! I have some serious questions
I have no resources right now
if you could dm me on instagram id appreciate it
@alexandranooch
I just got diagnosed with POTS except im skeptical given the extreme nature of the shortness of breath and tachycardia while sitting
thank you
Hey, Alexandra , I've sent you a dm :)
💚💚💚
thanks!
🌹
ROXI 😊
Yiu don’t mention DNRS helping. I thought you did it too?
Because it didn’t help me. You can watch this video if you’d like to know why it didn’t work for me... ua-cam.com/video/-EmcykHw8Rk/v-deo.html
I always wonder what on Earth they mean when they say you can “grow out of” pots. Wtf does that even mean? How are they getting that info? Are they diagnosing patients with pots and then telling them they’ll grow out of it and then assume they’re correct when that patient doesn’t come back to them?
Because they don’t look for the cause, but rather the symptom regulator ( aka medications). In my case I was severely deficient in b1, vit D, unfortified nutritional yeast, calcium, magnesium, iron. It took me 1.5 years to get better. Heart palps, POTS, loss of muscle mass, crashed autonomic nervous sys , debilitating anxiety and panic attacks, fluctuating Bp all regulated themselves slowly but surely. EDS is horrible but has triggers…
My doctor told me that their patients get diagnosed and then usually don’t come back to see them, and he assumed this meant they had grown out of it. As someone who very much still has it, but who hasn’t been offered an appointment for a couple of years, my guess is that it probably just looks like people are growing out of it because they’re not being offered follow up appointments
@@GeorginasJourney I am so sorry this happened to you. I don’t mean to put the blame on you in any way, just a suggestion to look for maybe an integrative doctor? At my lowest point last year, I found that my acupuncturist, my chiropractor and my integrative medicine doc were the ones that helped me keep my sanity and ultimately get better. Somehow docs that see the body as a whole organism and not just try to treat a part of it, are more helpful in my case.
@@asathora1819 I can’t afford to see private doctors, I have to just use the NHS and they said they can’t help me any more than they are already
@@GeorginasJourney I understand. I’ll be 40 in a few months, but was forced to withdraw my pension prematurely and I’ve spent most of it on doctors, supplements and trying things. Kudos to you for doing research and connecting with us over the internet. You will find an optimal solution!!