I just wanted to thank you from the bottom of my heart. Your channel has helped me immensely during one of the scariest, darkest times of my entire life. I use your exercises every single day, and my improvement has been remarkable. Your personal anecdotes and insights are so very helpful. Thank you so very much for being there for me, even though we are strangers. You made me feel not so alone and not so hopeless. I am a neonatal ICU doctor, and I have not been able to work for 9 months after I tested positive for CoViD. One day I will see all of my tiny patients once again. Thank you again, you beautiful courageous soul and fellow POTS warrior.
Hey. I have/had pots. I'm feeling better now but still in recovery process and in reconditioning phase. My HR and BP can be good for few days at a time or bit of a mix depending on weather and hormones. My HR sometimes is 100 while sitting but only 110-116 standing up. Or its 80-115. But due to exercise I can actually walk now and not broken glued to bed or floor. I remember few months ago I thought I was dying, I thought this was permanent, I thought I might as well get a wheelchair. I remember seeing few of your videos and they were truly inspirational. I had my doubts, I genuinely didn't think I'd ever get better. I thought others could, but not me. I didn't think pots and vasovagal syncope were reversible. I didn't think I'd ever have any improvement, but that I'd only get worse. Oddly enough, I'm better. Yayyyy :D I'm not sure what I did to get better. I tried Chinese acupuncture first, I think that did something. Only few sessions. Then i read extra Virgin olive oil was good for heart, so I started taking that. And fish oil for antiinflamitory effect. Also antihistamines and magnesium and vit D. Nice weather of 20-28 degrees at same time came around and my legs slowly started to "unlock". I remember once, walking to mailbox feeling my first step and only that one step feel lighter. I thought... Oh my God! There's hope! Then whenever I could I'd force myself to walk further. Sometimes 200 steps a day. Then whenever in bathroom or kitchen or whenever, any place any time whenever possible, I'd stand on my toes doing calf raises. I remember doing 2-3 thinking 10 would be impossible. Now I lose count how many times I do it per day. Probably 50-100. Now few months later... I can do 1-3 km a day. Depending on weather and hormones. I'm trying to stop my periods as cardiologist agrees that makes everything worse. Hormones expand veins and BP drops HR increases. But yeah...it's a miracle. Someone please pinch me. I still have a long way to go. But thanks for your videos. Even though I didn't believe I'd ever get better, I felt good watching your video, being happy at least someone escaped pots. And it feels like escaping death. So yes. Exercise is the way out. Whenever I feel too tired and go rest and take a day off... I feel terrible. That terrible pots feeling comes back. That feeling of dying is, i believe, lack of fresh oxygen in muscles and organs and that's body begging you to move and exercise. Also I drink minimum 3 liters of water. Sometimes 5+. I've abandoned idea of adding salt to food. I take half to 1/3 of a teaspoon of salt with almost every glass of water or half a litre of water. I'm not sure how much I use daily but I imagine it's 1-2 tablespoons. That may be why I've had this transformation. Key to getting out, escaping pots is, religiously or more like, become your own dictator. Play around with more salt, more water. Measure BP and HR multiple times a day. Eat 3 meals a day. Protein and carbs. And when you feel you can't get out of bed, that's exactly when you have to. And yes you can. It's hard, it's tough.... But it's possible. Oh I also tried box breathing but not too much as it sometimes lowers my already low BP. So for anyone out there thinking it's impossible... Don't give up. You can do it. Just do it. Become your own hero. I would have bet $1000000000 I'd never get better and I'd be bed/wheelchair bound for life. But I can walk now!!!! P.S. I'll have to get a personal trainer or exercise physiologist to help me get further. I should probably do some of those exercises you suggest. I did some of them when I was at my worst. But now I can walk so I just walk walk walk. I know I need to do more. And I will. Something other then walking and calf raises. But... I'm very shocked how much progress I've made in last few weeks. It's still really hard, tough, especially in summer heat. But doable. Patience and perseverance. My heart/chest hurts afterwards. Did you get that at all? I find lying down after exercise causes chest pain. I actually sometimes really dislike lying down. Which is bizzare as that's all I did for few years!!! Thanks for your videos. I'm glad you got better. I'm glad you decided to be a bright shining star for potsies in their time of darkness. Just to know there's hope, is sometimes enough to give it a go. I didn't believe I'd ever get better, I didn't... But I'm better. Still long way from normal health but I can walk now and not need to lye down on floor every few minutes. :* mwah :* thanks for giving us all hope. And to other potsies... You can do it. Maybe try exercise, salt and water before going down path of drugs. Sure take them if you have to that's what doctors are for. But just know there is maybe a chance you can do it without drugs, just hard work.
For those of you who have access to physiotherapy, please do give it a try. With regular physiotherapy over a long period of time, my symptoms were minimized to the level I can do everything - in fact I can walk more at a stretch now compared to pre POTS (7-8 miles). I still have very very mild symptoms (eg my heart rate is relatively high - 110-130 when I walk but I don’t feel dizzy or shaky). Not promising that it will work for everyone but it may help some.
I think my experience was similar. Took a year and a half to two years until I was “normal” and then maybe once or twice a year in heat I’d have a moment. But since covid it was a downhill spiral until a really bad episode and I had two weeks in bed and now I’m climbing out of it again. Been six months. Moving faster this time but now it’s summer I’m feeling like I’m getting worse again. I’m eating so much salt it seems crazy. But I’m trying to do things even if I feel off because I know it helps get me stronger. I feel like right now my brain and nervous system just need to catch up. 🤷🏻♀️ Your exercise video was helpful for ideas. Thanks!
I did several forms of lifestyle-based treatment that are available everywhere. The most important thing for me was exercise and reconditioning my muscles. I also needed to increase my blood volume which I did through drinking tons of water and increasing my sodium and potassium intake (check with your doctor before messing with potassium because too much can be dangerous). I also tried to manage stress, avoid processed foods, get a lot of sleep, etc. Medications can also help in addition to the other changes, but I honestly think that lifestyle alterations are the most important things for reversing your POTS long-term.
Hi. I was diagnosed with pots about 15 years ago and have continued to struggle with this chronic illness to this day. I have seen a ridiculous amount of doctors and specialists, tried different medications, and have been misdiagnosed more times than I could count. Even after my diagnosis, the doctors Ive seen have all been clueless on as how to treat me. After being passed around from doctor to doctor with zero help or answers and feeling like I lost hope, I became a mom and just like that, my health became not only about my quality of life, but also my sons. With the internet being such a huge source of information, I have learned everything I know about POTS through my own research. I need to take control over my health and over my life and I'm searching for any answers or tips that can help me to become a normal functioning human being. What Ive come to understand is that exercise and diet play a huge role in recovery. My hope is that you could tell me a bit more about what regiments have worked for you. Any tips or advice you have would be deeply appreciated. Thank you!
I'm sorry I didn't reply sooner-- I have been inactive for a while and haven't checked this channel in months. I'm so sorry that your experience with pots has been so hard-- I can relate. Sending you lots of love! In terms of specific regiments, I would say exercising as much as possible was hugely helpful for me. I found it really helpful to do frequent, short, and intense bursts of exercise throughout the day. For example, I would go into the bathroom in between classes at school and do 1-2 mins of squats or jumping jacks several times per day. Before I was well enough to do upright exercise, I would do short reconditioning exercises every couple of hours. That really helped with my fatigue, brain fog, and blood pooling. Managing stress is also huge (that can look different for everyone). Increasing my potassium intake was really helpful (I have a video on that for more info), and limiting any highly processed foods. Also, this might sound weird, but one of the most important things for me was changing my mindset about my illness. Hope is one of your strongest tools (There's an awesome book called "The Anatomy of Hope" if you're interested. "Mind Over Medicine" is also a good read). Your thoughts can actually affect your physical health, so believing that you will get better can actually help improve your health and vice versa. People can and do recover from POTS. Online chatrooms and such can often be skewed toward making it look like the prognosis is dire, but that's not always (or even usually) the case! Wishing you all the best!
This might be a bit of a personal question, but...Did you notice if your symptoms were worse during your monthly cycle? I'm on the upward trajectory in terms of POTS recovery, but every month during my cycle it's like a 100% regression. Do you have any recommendations to counter this? Thank you; best wishes❤.
I noticed my symptoms getting worse the week before menstruation...never figured out why. I have definitely heard people say their POTS is worse when they're on their periods, though. I unfortunately don't have many good recommendations other than push extra fluid because if you have POTS due to low blood volume, and you're losing blood on your period, then that would understandably make symptoms worse. Best of luck!
She’s likely on medication. People love to talk about recovery from pots. There’s no cure for it she’s just managing it like everyone else. She didn’t recover, she still has it. There’s literally not a cure and I hate when people come on here and claim they’re “recovered” no you’re managing symptoms like the rest of us
Look into the levine protocol! I have POTS as well and 5 months ago I was in the same position i couldn't care for myself I could only shower twice a week and use a shower chair I thought my life was over. But I got started on meds such as a beta blocker and some blood pressure medication since mine was so low and doing the levine protocol and I can actually care for myself now shower standing up again whenever I want to, cook and clean it has really given me my life back i still have a ways to go as I am only in month 3 but I definitely recommend! I still have the occasional tachycardia but it's nothing compared to what it used to be
@@Jennaxm____But you’re medicated…so that’s likely what’s helping the most. Exercise can help but it’s not a cure. The meds are likely what got you back up and showering
