ramakentesh Posted December 22, 2009 Report Share Posted December 22, 2009 Yesterday was a great day for me as I did NOTHING.....had a stomach ache so I sat on the couch all day. Felt better than usual with POTS stuff. But I know that is not the cure ...it is like cheating on your diet...the instantanious reward..i.e. sitting doing nothing is doing nothing for me even if I feel better in the short run. Erikayeah seems to be the case. Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted December 22, 2009 Report Share Posted December 22, 2009 Awesome! Great to finally hear that someone is recovering or has recovered. Are you standing for two hours straight, or is the standing spread out throughout the day? Quote Link to comment Share on other sites More sharing options...
cathielu Posted December 22, 2009 Author Report Share Posted December 22, 2009 Either all at once or spread out is fine. If I go to a social event, I stand most of the time, which works out well. Love, Catherine Quote Link to comment Share on other sites More sharing options...
roseannecl@gmail.com Posted December 23, 2009 Report Share Posted December 23, 2009 Yesterday was a great day for me as I did NOTHING.....had a stomach ache so I sat on the couch all day. Felt better than usual with POTS stuff. But I know that is not the cure ...it is like cheating on your diet...the instantanious reward..i.e. sitting doing nothing is doing nothing for me even if I feel better in the short run. Erikayeah seems to be the case.It's odd. The opposite seems to be true for me. When I go through really bad POTS phases I find the only thing that helps is intense rest. I'm generally completely bed bound with the severity of the POTS symptoms. During those phases, which can last 6 months, if I try and do anything, my POTS gets worse for weeks and I get very violently ill to the point of not being able to eat at all. Yet after complete solid intense rest for months the symptoms do eventually abate and I become semi functional again,.ie able to shower, get around the house and outside occasionally. This happens over a course of maybe 2 or three weeks once it seems to click into getting better. I never know when the rug will be pulled from under me again though and when I'll spiral into disaster. Longest good phase I've had in a row was 6 months. Quote Link to comment Share on other sites More sharing options...
cathielu Posted December 23, 2009 Author Report Share Posted December 23, 2009 After I propped up over a period of weeks, I eventually started walking for a few minutes at a time. I measured how many minutes I could comfortably walk at a time, and gradually increased it over time. Eventually I was able to stand, following the same pattern of measuring how many minutes I could comfortably stand at a time. I gradually increased that over time too.Love, Catherine Quote Link to comment Share on other sites More sharing options...
bella27 Posted December 24, 2009 Report Share Posted December 24, 2009 I'm a bit confused because I always found that doing headstands (to get the blood to the brain) every morning helps with brain fog. Perhaps this is just the placebo effect. If a raised bed and standing for 2 hours helps with POTS, am I actually hurting myself by doing the opposite (headstands)? Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 24, 2009 Report Share Posted December 24, 2009 bella27,Don't fret, I am like you in that I cannot tolerate tilting the head of the bed. I get less sleep and more problems. It makes lymph fluid pool in my legs, makes me wake with a headache too. I can't do the handstands (good for your flexible body!) BUT I have an inversion table and when I am so out of it and sleepy and need to get blood to the brain I go on the inversion table! It works for me. So you are not alone.Also, I am delighted for all those who experience permanent healing. I try/have tried/retry every remedy for many years and have only been blessed with "periods" of remission. Some remissions have lasted many months. I need to remind myself that for some of us, the "relapse" that comes after a wonderful remission is not of our failing or fault.with peace and love,tearose Quote Link to comment Share on other sites More sharing options...
cathielu Posted December 24, 2009 Author Report Share Posted December 24, 2009 The path to recoery is a very narrow road. When I was in the propping up process, I could only increase the tilt at the most 2 inches every four days. If I increased it even a couple of inches too far too soon, I would have so much adrenaline pumping into my bloodstream that I couldn't sleep all night and had to lower the bed back down a couple of inches. Propping up my bed caused me to have swelling in my legs and feet, so I had to wear "firm" support hose for 24 hours a day until I finished the proppng up/walking/standing therapy months later. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted December 24, 2009 Report Share Posted December 24, 2009 I personally get bradycardia in the evening and must remove my compression. I can not mange 24 hours without causing many other problems! Clearly we are all different.I am happy you are doing so well cathielu! Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 30, 2009 Report Share Posted December 30, 2009 Bella- That's funny that you mentioned doing headstands. I've been in the habit of doing handstands over the past few years when I start feeling like not enough blood is getting to my head. At work I used to go find a corner in the office and do a handstand for as long as I could. (Good thing I wear scrubs at work and not dresses! ) Recently I've been playing with handstands before I get in the shower to see if it would help me get thru a shower without having to sit on the floor to keep from blacking out. Quote Link to comment Share on other sites More sharing options...
cathielu Posted January 5, 2010 Author Report Share Posted January 5, 2010 There were some times when my legs swelled up and I had to wear the "medium" stockings instead of the "firm" ones. It took a few days for the leg swelling to go down if I was wearing the "medium" ones. That's why it worked better to wear them all the time, and not let the swelling set in.When I was doing the propping up, it helped to have both a bed and a recliner propped up at the right angles, so I could change positions/rooms occasionally. I measured the difference in height between my feet and the top of my head, and had both set to the same height difference.After I recovered my circulation, I was able to improve through strength training, aerobic exercise, and cardio intervals. Over time, my strength and energy have improved a lot, much more than I had hoped. I am so grateful and relieved. Love,Catherine Quote Link to comment Share on other sites More sharing options...
cathielu Posted January 6, 2010 Author Report Share Posted January 6, 2010 After I improved with the propping up sequence over six weeks, I moved on to the next phase of orthostatic training. Standing up a few minutes at a time, according to comfort level, stimulated my the blood vessels to strengthen themselves, and improvement could be seen each week. Building up to a total of two hours standing per day was the key to my recovery. When I was able to eventually stand for two hours at a time without any circulatory symptoms, I was convinced that I was healed, and I was able to move on with my goals of education and career. The entire recovery period took me 7 months, including the six weeks of propping up and the 5.5 months of the standing therapy. If I had it to do again, I could probably do the standing portion in a much shorter time frame. I kept getting infections and it slowed my progress, and I didn't know how to carry out the orthostatic training program. My feet had to get used to the increased heel pressure. I had some athletic shoes with gel heel cushions that were very helful. Love,Catherine Quote Link to comment Share on other sites More sharing options...
cathielu Posted January 16, 2010 Author Report Share Posted January 16, 2010 If anyone has improvement with this propping up therapy, please let me know. Love,Catherine Quote Link to comment Share on other sites More sharing options...
futurehope Posted January 16, 2010 Report Share Posted January 16, 2010 Cathielu,I'm so happy for you that you managed to improve your quality of life! Congratulations!For me, my symptoms encompass more than orthostatic intolerance. I can feel badly from lying in bed all night, probably from brachyardia or poor circulation while supine. I tire easily. I have digestive difficulties. My body is sensitive to medications and I get out of breath from speaking or singing. I could go on, but what I'm trying to say is....I do not have simply orthostatic intolerance......my problem is autonomic nervous system malfunction....in any position...which includes other things besides standing. For instance, I have heat intolerance and easy dehydration, and I dislike bending over.I wrote this post because I suspect that for many of us, addressing the orthostatic intolerance issue is not really correcting all the other issues that can be manifest with autonomic difficulties. We are different from each other.But, I do not want to minimize the success you've had from not being able to stand to finally being able to. That is rewarding! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted January 16, 2010 Report Share Posted January 16, 2010 Futurehope,Thank you for writing about the OI issues. My symptoms sound a lot like yours, and everyone is different and struggles with their own personal set of complications. But I want to offer my sincere congrats to Cathielu!Cheers, Jana Quote Link to comment Share on other sites More sharing options...
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