TCP Posted August 21 Report Share Posted August 21 Hi! I know many people who either make a good recovery or manage their symptoms well often disappear from groups or forums as they are out there living their lives, but I’m curious to find out what really helped in getting their lives back. Is it a combination of things or one thing in particular? In real life I know of two people who with exercise and dietary changes have pretty much got normal lives, as long as they stick to the diet and exercise regimes. Quote Link to comment Share on other sites More sharing options...
MikeO Posted August 22 Report Share Posted August 22 15 hours ago, TCP said: Hi! I know many people who either make a good recovery or manage their symptoms well often disappear from groups or forums as they are out there living their lives, but I’m curious to find out what really helped in getting their lives back. Is it a combination of things or one thing in particular? In real life I know of two people who with exercise and dietary changes have pretty much got normal lives, as long as they stick to the diet and exercise regimes. For me getting back my life was and still is a bit of a journey. Once i realized that support for folks with chronic issues is very limited i starting taking the approach of chasing after what bothers me one item at a time. Trust me there was enough to deal with. i have completely changed out the meds that were giving me problems, pushed Gastro for my GI issues and have made notable progress as to how i feel, worked out what was not working for me in my diet, discovered i have a metabolic dysfunction so have made progress with that, we found that i am sensitive to histamine so have a plan to deal with seasonal allergies, We also what my BP and thankfully my Cardiologist will not let the health care over med me again chasing after some of the high readings. have worked hard on exercising or at least staying active. Sure there is more but this gives you an idea what i did to improve my life. Best, Mike Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted August 22 Report Share Posted August 22 I’ve developed a group of actions which have brought my Dysautonomia under control. After years of being bedridden from my symptoms, and suffering from scary BP numbers, I can now sit & stand for long durations, walk 1 mile, leave the house, shop and visit friends. My program includes: 1. The CHOP exercise program. 2. Hydration, was at 2 gallons/day, now at 1. 3. Sodium, was at 10 grams/day, now at 3. 4. Box breathing exercise 30 minutes/day 5. Visualization, image my individual organs and systems healing, 30 minutes/day. 6. Chanting Mantras, 30 minutes/day. 7. Meditation, 60 minutes/day. 8. Mediterranean Diet , NO cheating! Yes, my program is time consuming and requires diligence. But it works for me! With steady practice I feel much better and my BP is stable at 110/70! If I miss one or two days it’s okay. But if I miss more than that I begin to feel ill again and my BP becomes unstable, with values in the 180/95 range. So I do my program every day! I wish you and everyone else luck in finding solutions which help you! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 23 Report Share Posted August 23 I have distinct flare ups, that can be very disabling, and then long periods of minimal symptoms. I am not sure that anything I do gets me out of a flare sooner, but when in a flare up I get IV fluids, drink 2-3 liters daily plus extra salt. I eat a strict Mediterranean diet with no added sugar and very limited processed food. I also do a lot of meditation and breathing exercises. As I get better I admit a lot of this goes by the wayside. In this last flare up I got regular acupuncture--mainly at first bc of headaches. I believe it helped and I plan to continue to do some regular acupuncture as maintenance. I hope to continue with daily meditation and excellent diet as well for general health as well as to fend off another flare up if possible! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 30 Report Share Posted August 30 I’ve achieved complete resolution of my symptoms three times. Unfortunately, in each case, the treatment proved to be unsustainable longer term, as serious side effects set in and I had to either reduce the dose (still getting lesser benefits but not normality) or cease the treatment. Not quite what you were asking, but just goes to show that significant improvements are possible if not scuppered by pesky side effects. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 10 Report Share Posted September 10 Had POTS since 2003 and had several periods of almost complete remission, periods where i was complete cactus and unable to drive, work or do much, crashes that have changed nearly every time they have occured with quite different presenting symptoms. Its pretty darn weird. For about 12 years I did very well on Midodrine even in my dodgy periods when I swapped to med authorised psuedoephedrine. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 10 Report Share Posted September 10 28 minutes ago, ramakentesh said: crashes that have changed nearly every time they have occured with quite different presenting symptoms. Its pretty darn weird. Yes this is my experience too. I've had some pretty strange symptoms with some crashes that never come up again, and each crash seems to offer a unique kaleidoscope of symptoms for me too. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 13 Report Share Posted September 13 On 9/10/2024 at 10:43 PM, MomtoGiuliana said: Yes this is my experience too. I've had some pretty strange symptoms with some crashes that never come up again, and each crash seems to offer a unique kaleidoscope of symptoms for me too. Yes same here. One crash i even had dreaming while I was still awake and all these really strange sleep symptoms. Strange illness for sure. Quote Link to comment Share on other sites More sharing options...
bunny Posted September 13 Report Share Posted September 13 I wouldn't say I'm cured, but I'd say that I can live a full life... Perhaps I can't do everything all the time, as my body has its issues at times, but I've been able to do anything want to. While I have dysautonomia/POTS/NMH/bradycardia, my causes are due to physical damage and dain bramage, so YMMV. For me, #1 priority is exercise & diet. I don't always get to exercise as much as I want every week, but I try for 3x-4x a week. My body is weird in that I can do cardio for hours on end, but when I stop, my heart rate drops from 120-160 down to 60 within a couple of beats. Very unpleasant. For diet, mostly carnivore/keto/low carb, but not as strictly as I should. We've cut out seed oils and processed foods, which makes a big difference. Same with bread. If I want bread, we get it from the Amish or make it at home. Feed me a typical American diet with processed foods and my body turns to rubbish about 30-60 minutes after. NO meds. Tried various ones for awhile and felt far worse than before. When I discontinued the meds, I felt quite a bit better. BUT the Dr suggested a combo pacemaker/defib. I told them where they could shove it, especially with me being in my early 20s. The Dr scolded me and said I'd die if I didn't get one. It's been 20+ years since then. I used to send the guy a birthday card every year, "Nope, not dead yet." Sleep and hydration. I can't underscore the need for appropriate sleep enough. I try to get as much out of myself and my body as I can, which sometimes means 3-4 hours of sleep a night, sometimes even less. Well, that completely throws everything off. Hydration. Nowhere near as much as MaineDoug, but more-or-less making sure I keep a cup of cold water nearby all the time and taking notice of how much I'm sweating. Avoiding high humidity. This will sink me faster than just about anything. I ran into this yesterday when it was 92F outside with 75% humidity. I went downhill quick. I still get dizzy and still pass out sometimes, BUT not as often and with plenty of warning. Hours of warning. I know my body's triggers and signs and progression before I pass out and put myself in a safe place to recover. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted September 15 Report Share Posted September 15 On 9/13/2024 at 3:32 AM, bunny said: dain bramage My old dr diagnosed me with that too 🤕 didn't take my condition too seriously so I moved on to a different one for better guidance lol That's really wild that they tried to get you on board with a pacemaker that young.. and also that they wrongly tried to convince you that you'd be dead without it, that's terrible. Good for you for going with your gut 💪 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.