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green

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    Infrared light, vitamin C, to treat POTS.

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  1. Yeah, I've tried floating it is great. It doesn't generate the rebound symptoms that you get from European-style dry sauna. Where the temperature is up over 180 degrees f. I was hitting the European Dry Sauna while I was in another country for work, and it was killing me. I would just laze around and go in-and-out of consciousness for the next day. Very relaxing, but not good at treating POTS symptoms, I guess.
  2. Yes. I've thrown in 10 minutes of Wim Hof at night before sleep. I'm only one day four, but this program is working wonders for me. I think it is definitely helping. I am just noticing that I'm a lot more with it today.
  3. Has anyone had success with respiratory muscle training? I've been backsliding this summer, which I posted about a few weeks ago in a thread on heat and citocoline. One thing that I've been noticing is poor sleep. I have a diagnosis of sleep apnea, and even though it is supposedly under control, I still notice apnea-like sleep symptoms. So I've been looking for someway to improve my breathing, in the hopes this will improve my sleep, in the hopes this will reduce some of my symptoms. I've been looking into respiratory muscle training, specifically I found a book "Respiratory Muscle Training: Theory and Practice." The gist of this book (so far I'm in the third or fourth chapter) is that maximum inspiratory training (breathing in very hard, basically hyperventilating) will enhance both inspiratory and expiratory muscle performance. It's interesting to me to see the book talk about certain themes: (1) Balance and breathing are connected because the same muscles support both. People with poor breathing often have poor balance and vice-versa! (2) Back pain and breathing problems are connected, because the same muscles support both the back and breathing. (3) Any kind of weight training that puts a load on the spine will strengthen the diaphram (squats or carrying weights) Fascinating, right? I am amazed and hopeful. Many of these things resonate with me: (1) I have a lot of weird low-back pain which now I attribute to the POTS causing me to have difficulty maintaining posture. When POTS is worst, I seem to 'melt' into chairs as I have no muscle tone. Clearly, this has been messing up my back for years. (2) I have very weak core muscles, despite being a lifelong runner. A doctor told me this recently. Perhaps my shockingly weak core is part of why I have trouble sleeping through the night. So, my hope is that there's some connection here which I can exploit.My current plan is to do Wim Hoff Training before bed (hyperventilation followed by breath holding), core strengthening exercises (crunches, etc.) and I am wearing a device that makes respiration harder while I work for 30 minutes a day, working up to as much I can handle. I'm already sensing that there must be some connection between POTS symptoms and respiration that we don't understand. I wonder if other people have insights into this.
  4. >For sure worse in summer. What could be hitting us is the change from HOT/Humid to AC. I was able to goto the beach today. Did not feel great until I was there for a couple >of hours, like my body had to adjust to the temp/humidity. Well, that makes sense - your body doesn't handle the stress of the heat and humidity well and you exposed it to heat and humidity, so you felt bad. I'll be out only briefly early in the morning when it's not so bad and then stay in the A/C all day, but still feel terrible.
  5. Hello All, Long-term POTS-ish person here. I'm doing a lot better than I was at my worst over 15 years ago and no longer have classic POTS symptoms of light-headedness, at all. But, I have a question: do you guys feel worse in the summer even if you stay inside with the A/C? It's an important question for me right now because I'm really dragging at work right now and it's freaking me out. Even though no classical POTS-y type problems, I'm really tired and just sort of spacing out. Also: I've been taking citocoline for the past month. I didn't feel anything, but now that I'm off (per A-B-A self-experimentation where you go on/off to make sure you're really benefiting) it I'm noticing that my memory problems were better and I was PERHAPS doing relatively well in June (if I deserve a handicap for the heat!) Some people may be interested in some research saying citocoline can improve BP stability: https://nnp.ima-press.net/nnp/article/view/436 I'd appreciate anyone who can share their experience with heat - even if you're staying in the A/C. I run in the mornings, but it's cool then. Not sure what's going on! Thanks ahead of time - Green
  6. Yes, they said I had ADHD as a child. I took ritalin. In my early 20's I was obsessed with this idea that my problems were ADHD / anxiety and I took a lot of psychotropic medications that, overall, caused more problems than they fixed. It is very strange. As a child I took a low dose of ritalin and I hated it - it killed my appetite but it did improve my school performance (although please note - long-term studies show amphetamines do not really improve performance). I tried it again in college, a higher dose of some amphetamine. And I think that the meds worsened my POTS-like issues (see what I did there?). My issues started in high school and got much better my freshman year of college (no meds), but worsened in my sophomore year when I was taking a higher dose of amphetamine, running cross-country, and definitely not getting enough sleep. What I think now is that a combination of stress, meds, running, poor sleep hygeine may have caused some damage when I was younger - and I had autonomic instability as a result. Perhaps it resolved as a result of improved sleep hygeine (and I got a device to treat my apnea), not taking meds, and laying off on the running. I hope I can get back into running now. The doctor said he thinks I should try to keep my cardiovascular fitness towards the peak end to reduce my susceptibility to orthostatic intolerance issues. I'll look at this research, Pistol. Thanks!
  7. Hello All, Thank you, Pistol for the link. I went back for my final consultation today: I am pretty normal on ALL tests. Even tests for auto-immune problems. The only slightly abnormal thing was some venuous pooling which they said was probably genetic since my Mom has varicose veins. The doctor said that neither POTS nor dysautonomia explain my problems with fatigue. So there you go. He said it could be mitochondrial disorder but he doubts it. I am inclined to accept this. I do feel better when I drink a lot of water, and I don't handle heat well, and I have brain fog and fatigue, but maybe I have sufficient hardware to succeed at life and I have been having so much trouble because I am not properly organized and/or not channeling my energy effectively. best, GREEN
  8. Thanks for your support, everyone! It IS possible that I DON'T HAVE POTS. And maybe it is worth the money to know. I finished the last of the tests today - sweat test. Clearly, I am normal for everything. Pretty fit, pretty normal. It is sad because I was just talking to my Dad on the phone yesterday and he describes the same kind of fatigue issues that brought me here. He also says he "gets woozy sometimes" and can't play pickelball (strange game popular with my parents and their friends), so he'll sit out rounds. It reminds me of me not being able to move fast enough in the warm summer weather to play sports when I was younger. This is some sort of familial problem that we have no explanation for - it is impacting more than just me.
  9. Hello All, I went to a main hospital in Rochester, MN. In fact, I am still here. They booked me across the weekend, so I came to my first appointment last Tuesday and my last appointment is this Tuesday. They have run a lot of tests: stress tests, autonomic tests, oxygenated blood test, catchecholamine test, blood tests. So far my consultations have been a real bummer. First the neurologist said that while I may have POTS, he doesn't think so, and even if I did, my POTS wouldn't explain my symptoms. I told him I have generalized fatigue independent of autonomic stressors like heat/cold, standing, stress, etc. (I also get worse from all those things: heat/cold, standing still for more than a few minutes, stress). He said that POTS doesn't explain general fatigue. I guess I felt like...this was kind of a lame answer from a supposed autonomic specialist. Arn't they supposed to understand that POTS causes fatigue? And then I had a bunch of tests and the exercise consultant said: you can either do high-intensity short-duration exercise OR you can do a lot of low-intensity exercise...either is equally supported by evidence and neither works for everyone. This did not strike me as particularly insightful, but rather a rehash of the old: POTS is due to deconditioning so exercise your way out of it. And in general, I did not find the exercise consultant to be helpful - this is stuff I've tried before. I tried Dr. Stewart's gradated exercise program years ago and it did not help. I am looking over all my tests too - they are all negative. Stress test was normal, autonomic tests normal, catchecholamine normal.... normal. So, one thought is: maybe I don't have POTS?? I even suggested that in the opening interview with the dude. And he was not helpful. Maybe they could have checked for something else if he was so confident that I don't have POTS? I tried communicating that to him but I had a lot of trouble understanding his english. He sort of barked at me that he could refer me to the chronic fatigue clinic, but that didn't seem like a smart move. I also just had trouble understanding what he was attempting to communicate in general. Anyway, I haven't done the final consultation. That is Tuesday. But it seems pretty clear that I haven't learned anything about my condition that could justify the incredible expenditure of flying to Rochester, MN and spending a week at an AirBnB, and paying for thousands of dollars of tests. I am incredibly bummed! I am thinking of asking the doctor to write a letter saying "this man clearly does not have POTS" because a year ago I was denied entry to the Peace Corps because I reported POTS. I guess if I don't have it, then I can go start a new life in the third world? Absolutely baffled! Thoughts would be appreciated, but I do not know if it is even coherrent what I am asking. Here is my central question: Is this clinic terrible or is it me? 1.) They poo-pooed my diagnosis at the start. 2.) Despite having serious doubts about my diagnosis, they didn't run any other tests or explore anything interesting. They plowed ahead with the full battery of POTS tests. 3.) They taught me nothing except: you no longer qualify as having POTS. 4.) I have spent an incredible sum of money and have nothing that could help me, except possibly evidence that I do not not have POTS. I am bummed about it because - I still feel bad! I wouldn't have wasted all this money if I were high energy and getting things done! I am low energy and struggling at life! I am not going to do this clinic thing again if they want to refer me to the chronic fatigue clinic - it is too late, dude. I spent massive amounts of cash already.
  10. Hello, Yes. I often feel better if I move and sink into a torpor from sitting or standing. At least I can go for long walks even when I feel bad. It is a strange way to be ill: no matter how bad I feel, I can almost always feel better by continuing to move. I had a strange experience last summer. I went for a hike on the Devil's Path in New York. It is among the top 10 hardest public hiking trails on the East Coast. My hiking partner does not have POTS and does not really know about my condition (I think I've told him: sometimes I get dizzy and I take medicine for it). Devil's Trail takes several days for an experienced hiker and it is mostly like walking up (or down) a flight of stairs. So imagine walking up and down stairs all day, but with a 20-lbs backpack containing a tent, sleeping bag, and water on your back. When we started out I was SCARED because I felt dizzy and was greying out. For the first 5 hours as we walked along flat ground from the car to the start of the trail (we left our car at the END point and then planned to HIKE along flat public road to the start, then hike the trail back to the car). But by the second day, I was doing well and my FRIEND was struggling! Really badly. I think he was in danger of heat stroke. Long story short: we ran out of water and he was dying of thirst. I was really quite fine. We ditched the trail at the end of Day 2 and went home 1 day early. So what is going on there? I can barely focus at a computer during the summer - needing to get up and move around and being almost incapable of focusing. I drink coffee or take stimulants to break the topor and then end up bouncing from website to website or doing stupid things and not focusing. But....I can GO GO GO on my legs like some kind of pack animal. I guess it is just a lucky thing. My therapist says: be grateful for what you have. Focus on the positive: you can walk. Lots of people with chronic health conditions cannot walk. So that is a great thing. I suppose if I ever lose my job and become completely unemployable I could get disability and then just hike the country forever like Forest Gump did. In fact, I wonder if some of the homeless people we see who are just perpetual vagrants are people with POTS. They can't hold jobs because they can't sit or stand and focus, so they just keep moving. Hard to say. Take care of yourselves, everyone.
  11. Hello. I seem to have trouble with downward changes rather than absolute pressure. But in general this pattern holds: Rainy weather = feel relaxed or sedated and less able to work. High pressure = more energy, sometimes too much.
  12. I also have good and bad days. And I have good and bad seasons. And good or bad years. I suspect that there is some kind of "unstable equilibrium" phenomena in our autonomic systems. That is, our autonomic systems respond to the variable stressors by striking up some kind of equilibrium, which is sometimes good for our functioning and sometimes no good. I've noticed that after I exercise, I may be tired for two days. I tend to feel worse when I fly, but once I flew to Orlando Florida and when the plane landed I was electrified with energy and went sprinting through the airport. Nothing makes sense. It is crazy and frustrating.
  13. Interesting, I don't like breathing out, so breathing 1:1 is usually much easier than 2:1. You can also speed up your breaths or your counts and that also helps to achieve the ratio you want. Over time you get used to it and you can slow down naturally. Absolutely! I am in the early stages of experimenting. For whatever reason 1:1 has always been agonizing for me. I do wonder if my seemingly-unusual comfort zone of a 5 second inhalation, 5 second hold at full, 10 second exhalation, 5 second hold at empty, might be suboptimal. I remember when my POTS symptoms were the worst in adolescence, I had INCREDIBLY SLOW and uncomfortable breathing. I would basically hold my breath between each breath...I wonder if I was unconsciously doing that to raise my blood pressure!
  14. Hello katyroq, I don't know why you would have a paradoxical reaction to square breathing. But, I used to practice Zen meditation at a local Sangha and a big part of the Soto tradition is following the breath while you meditate. I quit practicing Zen because I was getting agitated by the way my breathing would deepen and I would become uncomfortable, light-headed, and get red in the face. When I practice square breathing today I am still noticing that it is something uncomfortable. It is not as a natural feeling as I would like it to be. Indeed, I am using a slightly modified system of 1:2 (twice as long breathing out as breathing in). So, perhaps I will never be able to totally square breathe. But something has changed between today and when I was practicing Zen: I had surgery on my sinuses to increase clearance including correcting a deviated septum. I am sure that the sinus surgery is responsible for the decreased discomfort associated with breathing exercises. Here is why: I sometimes take modafinil (provigil) which is very stimulating for me, causes some shortness of breath and ups heart rate. When I took modafinil BEFORE sinus surgery, I also turned red in the face and had the same kinds of discomfort that I would have while practicing meditation. Today, I do not have nearly such a reaction to modafinil (I took some today!) I think breathing is important and lots of things can interfere with our ability to breath comfortably. Hello Chuske You asked about HRV. I have struggled to find people who are experts in HRV and gotten nowhere. It seems to be a theoretical thing with little practical implementation. Commercial instrumentation exists that offers to help you monitor your HRV, but the science is not settled even on what "HRV" means. Respectfully, Green
  15. Hello All, Recently I learned about square breathing, which involves matching inhalation time to exhalation time. I was advised to use square breathing for anxiety. I have had success at temporarily reducing my POTS symptoms by using square breathing. What I've found is that if I square breath for two - five minutes, then the weakness in my limbs, dizziness, and inability to focus, improves for up to an hour. This is just a very basic thing anyone can try without a doctor and it does not cost any money.
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