arrow29 Comments
  1. Jill
    Aug 06 - 4:00 pm

    Thanks once again Cort. I don’t know how you manage to keep up with everything! One thing, do you know how to do the tilting exercise Julia is talking about? Maybe we all need a board against a wall tilted at a certain angle?

    • Sasha
      Aug 07 - 4:48 am

      I heard this described in another of her talks – you stand with your shoulders against a wall and with your heels 6 inches from the wall so that your body forms the hypoteneuse of a right-angled triangle, with the wall and floor making the other two sides.

      You stand there, absolutely still, not talking, for up to half an hour, twice a day, until you get symptoms and then you stop. You aim to build up the time you can spend standing there. It’s called “tilt training” or “home orthostatic training”.

      Here’s the abstract of a paper of hers on this from a few years back:

      Eur J Clin Invest. 2010 Jan;40(1):18-24. Epub 2009 Nov 12.
      Home orthostatic training in chronic fatigue syndrome–a randomized, placebo-controlled feasibility study.

      Sutcliffe K, Gray J, Tan MP, Pairman J, Wilton K, Parry SW, Newton JL.

      UK NIHR Biomedical Research Centre in Ageing – Cardiovascular Theme, Newcastle, UK.

      Abstract

      BACKGROUND: Orthostatic (Tilt)-training is an effective treatment for neurally mediated hypotension (NMH). NMH is a frequent finding in chronic fatigue syndrome (CFS). We evaluated home orthostatic training (HOT) in CFS in a randomized placebo-controlled feasibility study.

      METHODS: Thirty-eight patients with CFS (Fukuda Criteria) were randomly allocated to daily tilt training (n = 19) or sham training (n = 19) for 6 months. Haemodynamic responses to standing were performed in all subjects using continuous technology (Taskforce) at enrolment, week 1, 4 and 24. Symptom response and compliance were assessed using diaries.

      RESULTS: Two patients (one from each arm) withdrew from the study. Fourteen patients in each group complied completely or partially, and patients found the training manageable and achievable. Compared to the sham group, blood pressure while standing dropped to 8.0 mmHg less in the HOT group at 4 weeks (95% CI: 1.0 to 15.0, P = 0.03). At 4 weeks, the HOT group had higher total peripheral resistance compared to the sham group; mean difference 70.2, 95% CI: -371.4 to 511.8. Changes were maintained at 6 months. There was no significant difference in fatigue between groups at 4 weeks (mean difference 1.4, 95% CI: -13.5 to 16.2), but there was a trend towards improvement in fatigue at 6 months. Compliers had lower fatigue compared to non-compliers.

      CONCLUSIONS: A placebo-controlled study of HOT in CFS is feasible. HOT is well tolerated and generally complied with. A likely physiological rationale for HOT in CFS is related to reductions in orthostatic intolerance. An adequately powered study including strategies to enhance compliance is warranted.​

      • Sasha
        Aug 07 - 4:52 am

        BTW, a cushioned “drop zone” is recommended when you’re doing this in case you pass out.

        Although I have OI I don’t faint so I’ve dispensed with a drop zone, partly because there’s no room in my flat for one – it’s either that or not try it. I started to try this a few weeks ago but caught some bug so have had to suspend my trial of it.

        • MarthaLauren
          Aug 07 - 11:35 am

          Hi Sasha,
          Thanks so much for posting a description of the exercise. I’m going to try it as well. Sleeping on a wedge has really seemed to help for me as a passive re-training of my system. Right away I could feel the difference in my heart rate when I’d get up in the morning (typically it soars when I first get up, but not any more). So maybe the wall tilt exercise is the next step?…retraining my body to actually be upright…comfortably. Imagine that! Good luck with your standing (once you can get back to it)! Martha.

          • Sasha
            Aug 07 - 4:08 pm

            Hi Martha – that’s great that you got a result with the bed tilt! I tried that for three months but it made no difference at all. It would be great to be able to subgroup us so that we’d have some indication of what was going to work!

  2. MarthaLauren
    Aug 06 - 4:20 pm

    Hi Cort!

    I’m very interested in any/all non-drug solutions for regulating POTS and the ANS. Do you have any idea what Dr. Newton specifically means when she talks about having patients lean up against a wall at a tilt? As in, leaning on their shoulder? Or, on the backs of their necks? If you (or someone else out there) don’t happen know the answer, I will try emailing Dr. Newton. I think I saw her email, and the offer to contact her flash by at the end of the video. (It was in German, but I think that’s what it said!)

    I’ve been re-focused on ANS dysfunction and POTS ever since getting the flu this winter and seeing a marked return of my Orthostatic Intolerance issues with it. It was really something to see that symptom complex return in full force after having watched it slowly (and so stubbornly!) get better over the many years since its initial onset. My experience this winter eradicated any question in my mind about the involvement/power of OI/POTS in my own condition….

    …I’ve been wearing “Nike Sculpt” compression leggings every day ever since (in addition to sleeping on a tilt, drinking salt water, and taking other recommended measures). I don’t know what a true OI expert would think of my wearing compression leggings that don’t have feet, but I’ve never seen the blood pooling in my feet, and they allow me to look/feel somewhat normally dressed, even in the summer (as opposed to true compression “hoes”). When I did the at-home POTS blood pressure test (as described by Dr. Bell), the compression leggings reduced my pulse change (from lying to standing) by 20 BPM (from 45 to 25). So, I still meet the general POTS criteria, even with the leggings on, but they definitely help, and make me feel better. Just throwing that out there. For a long time I put off pursuing the compression stocking angle because I couldn’t figure out how to make that work logistically. But the current compression craze in fitness gear may offer more people (including men!) more options. The Nike Sculpt leggings have the added benefit of coming way up to your belly button, so they seem to help with abdominal pooling too. That’s my two cent review!

    Thanks, as always, for all the good information! Martha.

    • Cort Johnson
      Aug 06 - 6:28 pm

      Thanks for the information on the compression stockings.

      A study was done on Tilt training and found it to be effective but I’m having trouble finding it…

      It’s really something to see something like return after the flu. Dr. Newton in the video said, I believe, that many peoples POTS occur after an infection….

      Of course now we have the autoantibody connection with POTS, and if you missed the autoimmune connection with pain blog, they found that an infection kicking off the production of autoantibodies was a critical part of some peoples CRPS.

  3. Ros
    Aug 06 - 5:37 pm

    Hi Cort,

    Great article. Really working on O.I at the moment due to better sleep from the herbal article from last year! l have started on skullcap & chamomile & it is working- l am sleeping better and therefore l am less dizzy & can manage better throughout the day. l am 3/10 now from 2.5 but still mostly house bound but improving. l look & feel better. l take gabbapentin too 100mg.

    l am doing air exercises on my back 20 cycling one way then then the other, also putting my arms back and deep breathing really helps. l do deep breathing now throughout the day helps to expand the lungs.

    l have lactic acid burning a bit but l stretch straight away & and it goes away. l can manage to do some more house cleaning than before, do some shopping and walk to a nearby park-2mins- away. Also noted not so much nausea as well – small blessings!

    l don’t look as washed out and feel better in myself – l know it is a combination of things that is helping me. Especially the Dr wahl’s diet as the right nutrition is key to everything else. But also key supplements too. l drink water all day & have salt but need chia seeds & phsyillium husks(soaked over night) to help me keep me regular.

    l really want to try the wall exercise but will wait for further instructions.

    Thank you & have a great day.

    • Cort Johnson
      Aug 06 - 6:31 pm

      I find deep breathing helps as well. I don’t know why my system is so stuck on ‘not deep breathing’ but for some reason it is. It’s lovely when that releases. Good luck with all you’re doing.

  4. Karen
    Aug 06 - 5:55 pm

    Hi Cort,

    Like you, increased fluid intake leaves me heading to the bathroom constantly. But, increased water consumption with even a few pinches of salt throughout the day (or eating salted foods) causes fluid build-up in my inner ears — especially the right ear. This results in severe hearing distortions and, at times, almost unbearable stabbing pain in my ears.

    I am wondering if anyone else has experienced this.

    Karen

    • Cort Johnson
      Aug 06 - 6:33 pm

      It’s really tricky isn’t it. I basically just don’t do a lot of fluids. I salt everything enormously and I should probably salt my water too…but I forget to.

      • Ros
        Aug 06 - 8:45 pm

        Cort l have puzzled about the why l found it so hard to breathe too, feeling so heavy and weighted down and it has been quite the struggle to do more than what l could do in the past. The coat hanger effect really does feel like the energy goes down my arms and not not my through my spine & legs enough like it should. But l have found through taking NADH- not every day- but l can feel my lungs opening, it is interesting as the B’s are so important for Brain function. But also L-Glutathione is key too & B1 100mg X 3 a day.

        Thankyou for the encouragement & Thank you to Dr Newton for putting this together. :-)

  5. Greg Cutler DVM
    Aug 06 - 6:11 pm

    I’m sorry, is it just me or am I reading the same theories over and over with no real treatment. If we’re to believe that a cure for an illness as severe as ours lies in smaller meals or horizontal exercises we’re in bigger trouble than we can even imagine.

    I certainly hope there’s some more in depth study going on behind this rehashing of ANS dysfunction.

    Greg

    • Cort Johnson
      Aug 06 - 6:36 pm

      Most of this is a basic rehashing of OI, POTS and blood flows – although I like to think that the Shungu/Newton connection is interesting and it’s encouraging that similar research is showing up in other disorders.

      Come to think of it the tilt training may be and I thought the effectiveness recumbent exercising for POTS was rather astonishing.

      No big breakthroughs though!

    • Corinne
      Aug 09 - 3:15 pm

      I agree Greg. Obviously this is for a subset of patients to which I do not belong. I got this same sort of ‘treatment’ at the Mayo clinic (my next blog) and was appalled at the suggestion that exercise on a recumbent bike would be an important part of the treatment protocol for me. I was dismissed as partially crazy when I said I could not exercise and refused to follow through. Apparently the glaring lesion on my spinal cord which suggested a neuro-immune issue that could not have been caused by POTS and which would have severely affected using my legs, did not matter. I too have slept in tilted beds for years, eaten tons of salt and drank liters of water, with no results. In fact the only thing that helps me is my IV saline infusions, which because of a nationwide shortage, I was unable to get for three weeks…result? A HR of 45 bpm(not resting!) after being up 4 hours, making breakfast, dressing, feeding my cats, etc, etc, which required my home health nurse to call my physician as a precaution. I knew it was my blood volume, which had gotten really low again because of the missing saline infusions. I had loaded up on salt and water and even added fludrocort that week!
      Some ME patients may have POTS as the primary component of their illness, like Dr. Bateman suggested. For them, this may help. But their many of us to which this is like a bandaid.

      Corinne

      • Anne Ö
        Aug 11 - 9:17 am

        I agree with Greg that there is a danger in presenting these things as effective treatment for the ME/CFS group – especially horizontal exercises, since many ME/CFS patients are likely to get PEM and deteriorate.

        Excellent comment, Corinne! Looking forward to your next blog.

      • MarthaLauren
        Aug 13 - 1:30 pm

        Hi Corinne,

        I absolutely agree that there are many subsets of CFS/ME (symptom expression, symptom severity, and probably, basic underlying illness process), and the fact that many highly educated and decorated health care professionals are yet to understand even just that is extraordinarily frustrating, and often even dangerous for patients. (I’m sorry to hear that you had such a terrible visit at the Mayo Clinic: what a disappointment to learn that our “leaders” are lagging so far behind.)

        I have felt, and continue to feel, this same basic frustration myself. Just recently I started seeing a new physical therapist at the glowing recommendation of another health care professional. After just one visit, I had the distinct feeling that her approach and my understanding of my condition were out of sync. So she sent me home with a book on pain, to help better explain the viewpoint that she approaches patient care from. My point here is not to review that book (or her approach to care), but just to say that on page 83 of the book I ran across a little side chart that lists all of the common diagnoses that people with chronic pain are often given: Fibromyalgia, Somatoform Pain Disorder, Chronic Fatigue Syndrome, Myofascial Syndrome….eight in all. And then the chart shows the translation of these terms under another column labeled “what the words actually mean”. (To quote…) Fibromyalgia: Pain in the Muscles and Ligaments. Somatoform pain disorder: Pain due to neurosis. Chronic Fatigue Syndrome: Always tired.

        When I got to that last one, I just felt like, “What The F***!” Excuse my language, but how are we ever supposed to make any progress when even highly respected (and published) professionals in relevant fields are handling every aspect of this entire debacle so extraordinarily sloppily?! I’d always thought the general sentiment expressed in that chart regarding CFS was just something that got aimed at patients in private: to see it in print was actually quite shocking. (And this is a textbook that is used in the training of new physical therapists.)

        My point is that I often feel the same basic source of frustration echoed in your comment, and Greg’s, and many others, when blogs like this are posted. This entire situation is maddening.

        That all being said, I feel that it is important to point out that while (yet to be officially determined) sub-sets obviously have a big affect on the actual usefulness/appropriateness of any treatment strategy, the timing of those treatments does as well. In my own experience, there are many things that I’m beginning to have great success with – which are the same things that had no effect (or poor effect) when I was at my sickest – now that I am out of the most acute stages of illness.

        This issue of using re-training techniques to affect POTS is a prime example. My POTS was most definitely caused by some aspect (maybe a triggered auto-immune state) of a virulent infectious process. I have no doubt about that. For me, it is part of a larger dysfunction of the Autonomic Nervous System: it has not been a pretty picture. But as I’ve worked to bring back balance to the microbial population of my gut, (manually) regulate my blood sugar, address musculoskeletal issues that were contributing to my pain, and many, many, more things, I’ve gradually gotten better and better. And now, those same treatments, which are often suggested to patients to help re-regulate the autonomic nervous system, finally make more sense, are far more tolerable, and are proving more effective. Because…I believe…I’ve gotten further away from the primary cause (and perpetuating factors) of that nervous system dysfunction, and now appear to be mostly in a re-training, or re-habilitation mode.

        Much of the information that is known about Autonomic Nervous System Dysfunction comes from NASA; because of their interest in helping astronauts overcome the condition once they are back on earth (the prolonged lack of gravity de-conditions the autonomic nervous system, and can make astronauts very unwell once they return to earth).

        So, the way I’ve come to think of it is this: all the sleeping on a tilt, compression pants, salt water jugging that a person can do, isn’t going to do much of anything if the person is still in “space”, i.e. under the influence of the primary force which is disrupting the function of their nervous system. But once back on earth, they may find those same techniques to be genuinely useful in assisting their bodies as they go through the readjustment phase.

        I just wanted to throw that out there. Personally, I’m glad I didn’t dismiss such suggestions entirely, and had them stowed away in my “tool shed” to apply at a more appropriate time.

        Of course, the challenge for patients is how to know if your ANS dysfunction reflects the fact that you are still “in space”, or merely suffering the effects of being out there for so long? (And I guess this genuine point of confusion should make us all somewhat more forgiving of our health care providers who often jump to the wrong conclusion too quickly, deliver their advice in a sloppy and disrespectful manner, and use words like “de-conditioning” without any awareness of how that sounds on the other side of the exam room table.)

        Anyway, those are just my two cents for the day! Martha.

  6. MsJustice
    Aug 07 - 5:30 am

    I think I must be one of the minority of people with OI that doesn’t tolerate an increase in salt. I need regular fluids and more in the morning, but just regular amounts of salt is best for me. I used to avoid salt, so I’m probably about right now.

    I don’t know if it’s because I don’t sweat as much as others-it takes great exertion or heat to make me sweat and I still don’t sweat that much. It could also be some other physiological reason. Anyone have any ideas?

    • MsJustice
      Aug 07 - 5:31 am

      Oh, I have a diagnosis of Orthostatic Hypotension, not POTS, diagnosed by Porf Newton’s team.

  7. MsJustice
    Aug 07 - 5:41 am

    My understanding, is that Prof Newton thinks that a subgroup have OI or POTS as a reults of deconditioning, hence the exercise and tilt training. Is it only the other subgroup who have mitochondrial dysfunction then? It would be good if Prof Newton could give more information on common presentations, onset and symptoms in each subgroup, so that inappropriate advice isn’t given to the wrong subgroup.

  8. Gijs
    Aug 07 - 6:18 am

    I think POTS is due to Autoimmunity.

  9. Gijs
    Aug 07 - 6:23 am

    Cort, this study is also interesting:

    Epitopes of microbial and human heat-shock protein 60 and their recognition in Myalgic Encephalomyelitis

    Elfaitouri A, Herrmann B, Bölin-Wiener A, Wang Y, Gottfries CG, Zachrisson O, Pipkorn R, Rönnblom L, Blomberg J

    Section of Clinical Microbiology, Department of Medical Sciences, Uppsala University, Uppsala, Sweden

  10. Ros
    Aug 07 - 8:01 pm

    Good Morning….well that was interesting exercise..l had to try out the wall exercise for 15mins being careful not to over do it. My pulse went up to 90 so that is why l stopped at 15mins, then when l pulled away from the wall …well l felt lighter all over & not dizzy but a good feeling.

    l walked around a bit to see if it was for real and then layed back down & my brain was so much more clearer …less fog infact l could think & all these thoughts came to me about did l do something similar when l was young at primary school because the feeling was the same??? Holding your breathe or something?

    Anyway after 15mins my pulse was back at 70 then by another 15mins down to 62 planking on my back and by then that feeling had passed a bit and my thinking slowed but not as heavy.

    So l called it AUP that stands for Ancient( cos my ancient brain has gone missing in action-numb) or Angled – U(upright) & P (planking) :-) And that is another thing l felt happy too.

    Could it also have been that l tried a 50mg B vit this morning with B1 as l am trying to rotate them and see what happens. l hope this is useful to someone…looking forward to seeing what happens tomorrow…and btw l lent on the wall at a gentle angle that felt comfortable not over stretching.:-)

    So l am wondering about the science of this phenomena? :-)

    • Cort Johnson
      Aug 08 - 10:31 am

      It would be great if such a simple thing could be so helpful. Please update us on how it goes and thanks for sharing that.

  11. Andy
    Aug 08 - 1:09 am

    hello,

    Karen, I experience the same exact thing when I eat salt. My ears will hurt, ring, and I will feel more dizzy and disoiented. I read that people with minearies disease need to limit salt intake.

    • Cort Johnson
      Aug 08 - 10:30 am

      Lots of subsets in ME/CFS!

  12. tandrsc
    Aug 09 - 4:45 am

    Yet another extremely helpful article!

    I’ve been doing the tilt thing for 5 mins several times a day for the last few days and the difference has been huge, my fatigue levels are way down. I followed the instructions as per an earlier comment…

    ==========
    I heard this described in another of her talks – you stand with your shoulders against a wall and with your heels 6 inches from the wall so that your body forms the hypoteneuse of a right-angled triangle, with the wall and floor making the other two sides.
    ==========

    I can’t do salt either, but I find diluted tomato juice very helpful (1 part juice, 2 parts water). Tomato juice is briefly mentioned in one of Cort’s articles on blood volume, which is how I came across it – http://www.cortjohnson.org/treating-chronic-fatigue-syndrome-mecfs/enhancing-blood-volume-in-chronic-fatigue-syndrome-mecfs-and-fibromyalgia/

  13. Anne Ö
    Aug 11 - 9:20 am

    >>My experience with coffee is also different; coffee is like a drug for me. Small amounts of it usually send me flying. But I pay for that later with jittery feelings, gut cramping and crashing, and then feeling exhausted the next day.

    Cort, I have the exact same reaction. I use a cup of coffee to “dope” myself when I have to manage something, such as writing a text. It makes my brain clearer and increases energy – very temporarily. Then comes the crash, the complete sleeplessness, massive stomach issues, etc.

    A couple of hours of relative function which is paid for dearly.

  14. Sian James
    Aug 26 - 12:49 am

    Great article, thanks. I have POTS as part of my dysfunctional and also a genetic kidney issue – I drink a lot of water, but introducing salt is more recent -it has helped. Am going to try the wall exercise. Tilted beds – do people mean raised at the head or foot?

    Coffee isn’t like a drug – it is a drug. I was addicted to it, stopped for fourteen years – then thought ‘I’ll just have one..’ Two years on, I am still reliant on it. It’s a real seesaw relationship – it really seems to help with POTS and mito issues, but from my 23andMe test I know it is likely I am a poor metaboliser of caffeine and that it may add to my risk of a heart attack. Separate research suggests it may also increase the risk of glaucoma for genetically-susceptible women. I already have macular degeneration and a family history of glaucoma. The 23andMe info suggests that poorer metabolisers get a bigger ‘hit’ off coffee. But it does seem to jump the gap in terms of energy production. Obviously it’s bad news for the kidneys and adrenals if you are vulnerable.

    Guess I need to just bite the bullet and stop again. But not today….

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