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green

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  1. 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!

  2. 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

     

     

     

     

     

     

  3. 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. 

  4. 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.

  5. 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. 

     

  6. 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. 

  7. 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!

     

  8. 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 

  9. 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. 

  10. I had a sinoplasty and turbinate redcation for a deviated septum and enlarged turbinates that were contributing to sleep apnea.

    I did not have any problems. I don't even remember the recovery, beyond that I was worried that it would be miserable to try to sleep with a stuffed nose filled with gauze, but it wasn't a big deal. 

    I was afraid of the surgery and afraid of the effects of anesthesia, and afraid that I would not remember anything from just prior to losing consciousness and this would be evidence that I am disposed to dementia later in life. None of my worries turned out to have any validity - the surgery was fine, the drugs did not have terrible effects on me, and I remember clearly "holding on" to consciousness for an extended period of time after being given the sedating gas and reflecting that operating rooms are insanely sterile and inhuman places. 

     

     

  11. He says nothing about the ACE issue.

    Am I the only person who has noticed that ACE (Angiotensin-converting enzyme) is implicated in both Covid and POTS? the coronavirus gains access to human cells by plugging its spike proteins into the ACE receptors. ACE receptors are particularly prevalent in the lungs. Well, POTS patients often have altered levels of ACE in their blood plasma. Do we also have higher or lower numbers of ACE receptors? I don't know, but it would seem like having more ACE receptors would make you more vulnerable to the virus and having less ACE receptors would make you less vulnerable to the virus.  I am surprised no one else has commented on this yet on Dinet.  

     

  12. Hello Ckitz (great name!),

    In reply to your inquiry: I have found the answer to be yes. I used to live in St. Louis, Missouri but moved to Connecticut for work in January 2019. I have a much better time in the spring and summer here than I did in St. Louis. The difference is quite striking - last spring I thought I was *cured* and quit taking my medication. By August I realized I was not cured and felt disappointed, but this spring I am again noticing how much better I feel. 

    I live and work in the coastal climate zone. I literally am less than two miles from the ocean at both home and work. I've read that being close to the ocean has a moderating and stabilizing impact on barometric pressure and temperature and I suspect this plays a role in the benefits I'm experiencing. 

    This experience has brought my attention to the significance of the winter as well: I feel about as bad during winters here in CT as I did in St. Louis. I notice less physical symptoms but significant cognitive impairment as the temperature drops below 32 degrees. I don't have a good explanation of why this is - I tried using humidifiers to keep the air from drying out, but this doesn't seem to fix it. I also have moderate sleep apnea and I know that sleep apnea is often worse in the winter, so that may explain it.

    It may also be worth noting that I have a mild case of POTS. I am 36 years old and have had symptoms since I was 18, but it does not stop me from exercising or walking around. I have never fainted. I am a college professor and I had some trouble as a graduate student standing up and lecturing, but that was before I began using medication and lifestyle interventions.

    I hope this helps! 

    Very respectfully,

    Green

  13. Hello All,

    I am very interested in the idea that since the virus interacts with ACE inhibitors, and ACE inhibitors are suspected to be involved in some kinds of POTS, that the coronavirus will have unique effects in POTS patients. I am not saying for ill, necessarily. For all we know, Coronavirus could function as an "upgrade package" that updates the DNA of POTS patients, reducing the severity of their illness! Or we could just be immune to covid!  

    Here is one study on POTS and ACE. I am just posting this to say that ACE is involved in POTS: 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050076/

    Here is one a Youtube video saying that Coronavirus has something to do with ACE: 

    https://jamanetwork.com/journals/jama/fullarticle/2763803

    This is an important thing to watch! I believe there is a good chance we will learn something new about POTS from the way Covid and POTS interact.

    In the meantime, I have my own covid prophylactic treatment program of zinc, vitamin C, brocolli sprouts, sleep and regular walks in the sun!

    V/r,

    Green 

     

     

     

     

  14. Hello All,

    I have been experimenting with the racetams. These are a class of pharmaceuticals developed by the Soviet Union to treat cerebrovascular disorders. They available without a prescription in USA where they are considered supplements. The racetams are popular in USA as so-called "nootropics," alleged to improve cognition in normal people.

    I tried: piracetam, aniracetam, and oxiracetam.

    I can't speak with confidence about piracetam and aniracetam, but it is clear that oxiracetam improves my brain fog significantly. I am a big fan of this drug. I refuse to take it regularly, but only occasionally, because I don't want to become dependent. I take 1,500 mg in a day in a divided dose (two 750 mg pills). 

    I became interested in the racetams after reading that they increased blood flow to the brain. I am convinced that my problem is that I don't get enough blood into my brain.

    In general, I have been doing a lot better lately. I don't engage in high impact cardio exercise anymore and I take mestinon. Mestinon is a huge booster for me and I would not compare the benefit from oxiracetam to mestinon. Mestinon is in another ballpark, although its benefits take a long time to build up. All I've noticed with oxiracetam is that I am a little brighter, perkier, and reaction time seems a bit faster. 

    I would be interested in hearing from other people who have experimented with the racetams or have any knowledge as to why they have not been tried more with POTS patients. 

     

     

     

  15. I found both the article and the original research paper to be misleading on this topic.

    The introduction to the research paper says:

    "The overall results support the existence of a link between reduction of exercise and muscle disuse and metabolism in the brain"

    There is an implication in the news article something about leg exercises is special, but we never see any explicit discussion of this in the original research paper.

    Of course, the leg muscles are key to a wide range of exercises such as running, walking, swimming. Of course, if you lose the ability to use your legs your options for exercising are greatly restricted, you will have atrophy. Of course, if you exercise less you will have a less healthy brain. Consequently, many people who lose the ability to use their legs as much as they used to, lose both some muscle mass and some brain health. 

    But nothing I found in the research article indicated that you couldn't take care of your brain by exercising your non-leg muscles.  

    I just comment on this because, for a long time, I was stuck on this idea that I HAD to exercise my way out of POTS or at least, I had to do intense cardio to keep myself from losing my cognitive abilities. It took a long time to realize that over-exertion played a role in keeping me perpetually feeling worse than I needed to be and that moderation was important. 

    I am not saying you have made this same mistake I have, but just wanted to flag a particular mistaken way of interpreting science research on the relationship between exercise and being healthy, for the sake of others. 

     

  16. lo Dizzygirls,

    Yes. Some seasonal effects. 

    Here's an update: I was FLOORED earlier today by fatigue and a heart that was beating too fast! I'd been fatigued and dizzy for three days. 

    But then I: 

    a) took a nap (I work from home on Thursdays)
    b) ate some salty food
    c) drank a liter of ashwaganda tea.

    I feel scads better now! 

    It occurs to me: I was drinking a liter of rhodiola rosea tea a day until Saturday and then I stopped abruptly. But, no ill effects until Tuesday. 

    In any event, doing a lot better - finally got to work. Well... now I have to work late.

  17. Has anyone tried broccoli sprouts? 

    I have been sprouting them in bulk and preparing them in a way that increases their sulforaphane content.

    My POTS symptoms abruptly worsened three days ago. It's very frustrating because 4-7 days ago I was doing better than usual. Now I am worse than usual.

    I wonder if broccoli sprouts are responsible for the decline in vigor. I started preparing them for their anti-inflammatory properties. I thought they might make me feel better, not worse.

  18. Hello All,

    I actually did OK. In the past six days I've exercised every day. I ran Friday, Sunday, Tuesday. I lifted weights at the gym on the other days. I can't do lower body weight lifting because of a leg injury.

    I'm feeling run down today, and I've felt run down in the past few days, but I also noticed that I've been pretty productive. I am going to take tomorrow off though - six days in a row straight exercise is too much. I'll take a break tomorrow and then run Friday morning again. Thank you for the advice and support!

  19. Pistol,

    Your hypothesis that POTS has been around at comparable levels of incidence in the population throughout the recent historical epoch, and is not, therefore, likely to be the result of some new toxin or pathogen being introduced into the environment, is intriguing!

    Do you have any evidence to support it? I am curious. Without more evidence, it seems just plain impossible to say.

    I see evidence of POTS in my Dad. I've talked to him about his exercise intolerance and told him "it sounds like you have a milder version of the autonomic dysfunction I have," but he doesn't seem interested. I've also seen it in my sister, plus my sister has a history of fainting from orthostatic stressors.

    Despite all this - you know there really isn't FAMILY history. I remember we all used to go to the park as kids and bike around. Every weekend for many years the whole family would be biking or roller-blading several miles. We didn't get sick back then. But, it is possible that it's just that we're all getting older now. And anyway, we are just one sample.

    So, IDK. 

     

  20. >So far so good. I don't usually take afternoon doses of my meds but this one I remember everyday. I got some extra chores done and slept well. As a side bonus, crossing fingers it is real, I> >seem to have better motiliy. That would be incredibly super awesome. I haven't taken it long enough to know if I need to adjust my dose up or down--usually my doctors tweak downwards. >I did have bad leg pains last night, I don't know if it is related. I often have pain in my legs but this was a bit more. I like the extra energy but if it's causing the leg pains at night I need to >stop.

    I had some strange pains in my body in the first two weeks on mestinon. The main side-effect I have is tension in my throat, loose bowels, abdominal cramping and some light-headedness that is somehow, but indescribably, different from the light-headedness I experience as part of POTS. 

     

  21. Wintersown

    I am glad to hear you're doing well on mestinon! It has been helping me too. Please keep us posted as to whether you find your benefits at your current dose taper off.

    Did your doctor say anything about potentially raising the dose? I am curious about other people's experiences - I think my doctor said we could titrate up, but I lost my insurance because my work contract ended. I have a new work contract with the federal government, but we are furloughed for the shutdown. I can't get anymore medical attention until the shutdown ends.

    So, I am taking 90 mg. of time-released mestinon 1X daily. I suspect I need to raise my dose. I could double my dose, but then I'd only have enough mestinon for about another 32 days.

  22. > Shorter - and milder - exercise three times a day is probably - in my experience - much more gentle and healthy for the body than rigorous exercise. 

    Maybe, but if you look at the Dr. Levine protocol, they recommend getting your HR waaay up there (I think it is 145+ bpm) after many months of training. I was definitely at that point of training for awhile. 

    I wish there were some objective biomarker of whether I'm overdoing it or not. I looked into HR variability at one point; I even went to see a researcher at a local University. But she told me: there's no consensus on HR variability and what it means. (weird twist: AFTER telling me to ignore HR variability because it's scientifically unsubstantiated she went on to tell me that I had a traumatic birth and will need to undergo 'rebirth' therapy to recover from my condition. Super-weird, disappointing experience with a top-tier research University)

    True to form: I was insomniac last night after my run. Today I have rubber leg syndrome. 

    This condition is so freaking weird.

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