I sometimes notice that caffeine can make me dehydrated, but I'm also diagnosed with AD. HD so I don't really get anxiety from caffeine. Or energetic, it helps with my bowels but I do notice it kind of does help with pots in the sense of my blood doesn't seem to sit and it seems to flow better but if I drink too much that's where the problem starts to come in.
I prefer to get through my diet. I just got diagnosed with pots, but I have been living with it for about a year and a month now and just like you said, I would strongly recommend getting it through diet and consulting your cardiologist or Doctor before supplementing with potassium pills. Because it can be very, very dangerous, if not done properly.
This is so encouraging. Thank you for sharing your journey. It’s so hard to wrap my head around only doing five minutes at a time as someone who was an athlete, personal trainer - I’m just so hard on myself and it sounds so defeating to only do five minutes a few times a day. But this has been so helpful to watch💛
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.
Thank you for this video! A lot of people in my country(even dysautonomia specialists) often say that your stress is the reason for dysautonomia. And I always wanted to disagree with the statement that "you are sick because of your stress." Because it kinda feels like it is blaming your illness on you. Like you didn't manage your stress well enough and now you're sick because of it. So my question was, "Am I THAT stressed, comparing to other people?" "A lot of people seems more stressful than I am, but why am I the only one?" "I'm a teenager now, and I don't think I'm gonna be less stressful throughout my life. So does that mean I'm going to be sick my whole life?" Well the answer is no, considering that stress is not the only factor, therefore meaning you CAN get better.
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.
Could you please link your bigger claims in the description of this video? Especially claims such as 1% shrinking of heart mass for each week. Not questioning them but I think it's very important to keep health-related suggestions scientific.
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!
for me the most convenient potassium source is LOW SODIUM V-8. (It HAS to be the low-sodium kind, not regular V-8. A small 5 oz can has 600 mg potassium. I drink one everyday and often two per day in the summer. Coconut water is great too!
I had these same symptoms before and running helped a ton probably because it works nearly every muscle simultaneously. But I can't do high impact exercise anymore but I can do some while standing and after some injuries the blood pooling came back. Did you have any blood pooling in your hands and feet with spotty discoloration? What exercises helped the most to improve your circulation and venous return?
Hey! I’ve been watching your channel this week and I love your attitude and energy. I’m in a pretty dark place with my pots symptoms right now, and I’m seeking inspiration. I’m just curious if and how you dealt with brain frog along your recovery journey? I don’t know if this makes sense, but I often have trouble initiating and sustaining tasks because of my mental slowness, which is another challenge I’m facing with exercise routines. Often, I get frustrated when I lose track of what I’m doing or I get angry that I didn’t start my exercise sooner in the day, etc. any thoughts on this??
This is really encouraging to me. My symptoms were never super severe. I'd fall but not faint. I didn't even faint for the tilt table, though I thought I was going to. I just got diagnosed about 2 months ago. I started asking doctors what was wrong when I wasn't able to get out of bed most days with my first pregnancy 6 years ago. I was told it was normal pregnancy, postpartum, depression. Once I got the diagnosis, my doctor and I decided that with my history I've probably had minor symptoms up to 22 years. That's when I started bruising, migraines, fatigue. I'm so frustrated it's taken so many years to get answers but so relieved to have them and anxious to be able to find out what I can actually do to not only live my life but o be fully part of my kids life's too
Fludrocortisone was prescribed to me last week, I’ve been feeling 0.01 better every day. Not much but a little, I was drinking 3 - 4 litres a day, but I could go to the loo 6 times in the time relatives & friends went once. All the liquid & extra salt was just weed out. I’ve tried all the recommended stuff, drink a lot, keep my feet up, take in extra salt & electrolytes etc. I was incredibly ill about 3 years ago and probably 2 + years before that, thanks to slimming world I found out why. I’m very allergic to gluten & yeast, on slimming world nice soft, fluffy white bread is naughty, so I wasn’t having it or the weetabix I liked. Not only had I got POTS, I could be completely knocked out for days, a fever but it didn’t show on a thermometer, spasms in my arms & legs, completely liquid ‘toilet stuff’ barely weeping though. Now I know why, I was so dehydrated from MCAD (mast cell activation) that exacerbated pots. I was told by my gp maybe 6 years ago I didn’t have it, despite having EDS & MCAD, knowing they often coexist. Then when I finally got a tilt table just before covid ugh 🤦🏼♀️ I think my email to my gp practice that the dr I saw about it was lucky I liked & respected him or I’d have complained. Oh, I was blacking out too, all blamed on EDS and of course fibromyalgia I don’t have. 3 cardiology appointments cancelled by the hospital, give them a break they have other priorities…to now which is a whole other story the messing around & sent to this dept, ring this number, no not us, ring this extension 😤
May I ask how active you were other than doing these exercises during this time? Like were you leaving the house and doing things in addition to short exercises? Or mostly homebound? I am in grad school with POTS and I feel like that takes up a lot of my energy so I haven’t been able to increase my exercise more. Thanks for your video!!
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
@@benjames1497 my HR was going silly low so I drank lots of water to flush it. Then I limit myself to 3 to 4 doses/scoops a day. I use the now foods powder form which is extra dangerous because its too easy to overdose if you don't have a measuring spoon
Black strap molasses is also loaded with potassium. I'll use it as a sugar substitute with homemade teas and juices sometimes. I was unaware of this ratio, but I had taken a few spoonfuls throughout my day today and it's helped a good bit. I just found this video and I'm glad I did. Thanks. I've been diagnosed for a few months now but nobody has helped me learn how to manage it. Is it wise to get help from a cardiologist or physical therapist if I've been too weak to do basic daily things? I'm really struggling. I can't wait to try your work outs. I need my life back.
i hope that you’ve found some help. salt-loading doesn’t generally help with hyperadrenergic pots. when approaching exercise, do it lying down first and slowly and minimally, or you’ll overexert. find a pots expert, and they would usually be a cardiologist, sometimes a neurologist. plain old cardiologists just don’t know enough about pots, and a physical therapist would leave you overexerted. potassium is a great and necessary addition to the pots regimen, and coconut water is a good source, but you need much more than a glass a day, unless you're also consuming other potassium-rich foods. do remember what was said in the video about potassium being dangerous if you have too little or too much - approach that aspect of your pots regimen with your family doctor’s help. good luck to you!
i’d like to stress again that potassium should be dealt with with your doctor. using the potassium supplements that you can find online or in stores is not at all a good idea, because supplement companies aren’t regulated, so you never really know how much you’re taking, which could have a very bad result.
I agree about the heart being involved in PoTS, but really what’s at its core is blood vessels. If blood vessels lose their elasticity, how is the blood being pumped from the legs up to the heart & brain?! Your calves. Work your calves, tiptoe every day for as long as you can handle. PoTS sufferer here. Also, cut out gluten!! Gluten aggravates intestinal issues. If the gut is healthy, the intestinal walls won’t be permeating gluten particles and irritating the nervous sys ( which is the initial trigger for PoTS). After 1.5 years, I have very few pots episodes. And that’s a miracle considering I couldn’t get up for 3 whole months.
I take Pyridostigmine during the day since it treats my POTS, gastroparesis/IBS-C, fatigue, and exercise intolerance; plus a low dose of either Guanfacine or Clonidine before bed to treat hyperadrenergic POTS, insomnia, anxiety, restless leg syndrome, and to prevent migraines.
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
