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Treatment suggestions for Orthostatic Intolerance (POTS or NMH)

Discussion in 'Treating POTS and Orthostatic Intolerance' started by ahimsa, Dec 4, 2017.

  1. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I thought I'd start a thread where folks can post links to documents, videos or websites that have treatment suggestions for Orthostatic Intolerance.

    I hope this is not duplicating any existing thread that is in one of the library sections. I looked but did not see one.

    Also, by having this thread in the treatment section I am hoping that it will be found more easily by newcomers. :)
     
    Last edited: Dec 4, 2017
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  2. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I have found that this patient handout by Dr. Rowe of Johns Hopkins is a good overview document

    http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

    (edited to add a brief extract)
     
    Last edited: Dec 4, 2017
  3. ahimsa

    ahimsa Senior Member (Voting Rights)

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  4. Hip

    Hip Senior Member (Voting Rights)

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    A severe ME/CFS patient on the PR forum was able to fully cure their POTS with a vigorous cardiovascular exercise regimen; POTS and NMH respond well to cardiovascular exercise.

    How you might ask was a severe ME/CFS patient able to perform this exercise? He found he was able to completely eliminate all PEM repercussions of intense physical exercise by taking corticosteroids 30 minutes before he began exercising. In this way, he was able to do a once weekly cardiovascular workout after taking a dose of corticosteroids, which after many months started to pay dividends for his POTS (but the exercise did not help improve his ME/CFS at all).

    I think this is quite a revolutionary idea, because if it works with other ME/CFS patients, it may enable them to perform vigorous exercise once a week, which will then likely show benefits for POTS and NHH. Note that taking high doses of corticosteroids every day usually leads to worsening of ME/CFS in the long term, probably because the immunosuppression allows pathogens to proliferate. But once weekly use of corticosteroids seemed to be safe and cause no adverse effects in this patient. Al

    More info in the corticosteroids section of this post.
     
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  5. Mij

    Mij Senior Member (Voting Rights)

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    https://my.clevelandclinic.org/heal...-dysfunction-syncope-information-instructions

    Lifestyle changes to improve vascular tone:

    • Use physical counter-maneuvers such as leg crossing, leg raising, toe crunching, and lower extremity muscle contracting to increase blood pressure and help pump venous blood back to heart.
    • * Not for M.E but general info Perform lower extremity exercises daily to improve the strength of the leg muscles. This will help prevent blood from pooling in the legs when standing and walking. Preferred exercises include walking, jogging, swimming, and/or using a stationary bike.
    Medications to improve vascular tone:
    • Fludrocortisone: improves blood vessel response and causes fluid retention
    • Midodrine: produces increase in vascular tone and elevation of blood pressure; has no effect on heart rate
    • Beta-blockers: prevent veins from opening excessively and help lower heart rate
    • Pyridostigmine: causes blood vessels to constrict which causes slight increase in blood pressure; has no effect on heart rate
    Lifestyle changes to improve blood pressure:
    • Drink 500ml (16 oz.) of water quickly and all at once, first thing in the morning (before getting out of bed) and when bad symptoms occur. This will result in an increased blood pressure within 5 minutes. The effects should last up to 1 hour and may improve orthostatic intolerance (OI). This condition involves symptoms associated with standing upright and improved by lying down.
    • Avoid large meals that can cause low blood pressure during digestion. It is better to eat smaller, more frequent meals throughout the day than to eat three large meals.
    • Avoid excessive caffeine intake, as it may increase urine production and reduce blood volume.
    Lifestyle changes to improve blood volume:
    • Raise the head of your bed by 6-10 inches. The entire bed must be at an angle. Raising only the head portion of the bed at waist level or using pillows will not be effective. Raising the head of the bed will cut urine formation overnight, allowing for more volume in the circulation in the morning. You may use cinder blocks or bed raising kits.
    • Drink 2-2.5 liters (about 8.5 to 11 cups) of fluids/day.
    • Increase the sodium intake in your diet to 3-5 grams/day. If no improvement is noticed and blood pressure remains stable, you may increase sodium intake to 5-7 grams/day. This will help the body retain fluid in the blood vessels to compensate for low blood pressure or excessive pooling of blood in veins. Please note that 1 teaspoon of salt equals 5g and 1/2 teaspoon of salt equals 3g.
    • Use custom-fitted elastic support stockings. These will reduce a tendency for blood to pool in legs when you are standing and may improve OI. An abdominal binder or Spanx® may also be useful. Thigh-high stockings are best with some abdominal compression, with pressure of at least 20-30 mmHg (30-40 mmHg pressure is ideal). Put them on first thing in the morning and remove before going to bed.
     
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  6. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Are there any electrolyte drink recipes people use? I'm thinking potassium, sodium, magnesium ? I drink 1.5 -2l fluids per day and I'm thinking of adding my potassium and magnesium supplements to the water so I drink them continuously through the day? Not sure if this is a good idea or not so would welcome other people's experiences.
     
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    Do they, though? I wonder how well established that is, given that any trials wouldn't be blindable and so would need objective measures.
     
  8. Trish

    Trish Moderator Staff Member

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    If you're in the UK, you may find POTS UK a useful organisation. They are set up and run by patients and doctors.
    http://www.potsuk.org/
     
  9. Hip

    Hip Senior Member (Voting Rights)

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    Think about how POTS is diagnosed.
     
  10. Mij

    Mij Senior Member (Voting Rights)

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    @arewenearlythereyet

    1. Dr. Cheney’s Homebrew
      • 1 cup filtered or spring water
      • 1/8 teaspoon of Sea Salt
      • 1/8 teaspoon of “No Salt” salt substitute (potassium).
      • Add lime or lemon juice for flavour.

      Cheney recommends 4-8 glasses Homebrew a day.
     
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    Objective measures are available but I wonder if they've actually been used in the trials (as opposed to questionnaires).
     
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  12. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I mix up my own electrolyte solution.

    It started as an attempt to be close to what is in Pedialyte (but with a bit less dextrose) so it uses potassium chloride and sodium citrate along with table salt (sodium chloride).

    1/2 teaspoon salt (sodium chloride)
    3/8 teaspoon sodium citrate
    3/8 teaspoon potassium chloride
    1 to 2 teaspoons powdered dextrose
    Add 1 liter of water, mix well and chill.

    Here's a slightly different recipe that uses baking soda:

    3/8 teaspoon salt (sodium chloride)
    1/4 teaspoon salt substitute (potassium chloride)
    1/2 teaspoon baking soda (sodium bicarbonate)
    1 to 2 teaspoons powdered dextrose
    Add 1 liter of water, mix well and chill.

    I hope I didn't make any typos here....

    I think these are probably different ratios from the updated WHO recipe for oral rehydration solution with different osmolality (don't ask me what that means, exactly). I'm not sure how much the ratios matter.

    My biggest concern when I started was that I was already on prescription potassium and didn't want to be taking too much (since there are so many warnings about it). I checked with my cardiologist and he didn't seem to think there was any problem with drinking Pedialyte, or the equivalent, even if I drank it every day. Your mileage may vary so check with your doctor(s).

    I have not noticed much difference between these two recipes. I have noticed a difference when I don't use any dextrose in the recipe.

    According to several folks on a thread at PR there shouldn't need to be any sugar in this solution for POTS/NMH folks unlike what is needed for typical patients using these solutions. However, maybe because I often skip dinner (empty stomach means better sleep for me) it seems to work better for me if there is some dextrose included.

    See this thread for a discussion of what sugar does to aid absorption - http://forums.phoenixrising.me/index.php?threads/the-role-of-sugar-in-electrolyte-solutions.22300/
     
  13. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Here's another website that talks about dysautonomia:

    https://thedysautonomiaproject.org/

    They have a book called The Dysautonomia Project: Understanding Autonomic Nervous System Disorders for Physicians and Patients.

    I have not read this book so
    I can't comment on whether it's helpful. I think it's only in print but maybe there's an ebook out there somewhere that I missed.

    And I haven't looked around the website very much. But the reason I'm posting is to share their book resource page which has some useful summary documents:

    https://thedysautonomiaproject.org/tdp-book-resources/

    The documents were .DOC files so I converted them to PDF files and attached them to this post.
     

    Attached Files:

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  14. ahimsa

    ahimsa Senior Member (Voting Rights)

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    This is a testing document, not a treatment document, but I thought it was good to add to this thread.

    https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf

    Related blog post:

    https://batemanhornecenter.org/learned-from-the-nasa-10-minute-lean-test/

    An excerpt:
     
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  15. Dial It In

    Dial It In Established Member (Voting Rights)

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    Is this an electrolyte substitute?
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    If POTS and NMH are due to poor autonomic regulation then I do not think it makes any sense to supplement with salt and water. The kidney will simply restore what it thinks is the 'right' volume but if the autonomic nervous system is not keeping vascular tone right then it is not going to be the right volume anyway.

    I strongly suspect that none of these advice documents are based on any reliable evidence. They look like they have been made up by physicians who are not that good at physiology but think that what ought to work (in their analysis) must work.

    I am pretty doubtful that orthostatic intolerance in ME/CFS is a cardiovascular problem anyway.
     
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  17. Mij

    Mij Senior Member (Voting Rights)

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    It replenishes and helps to increase your blood volume. Best taken in the early part of the day.
     
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  18. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I have no idea what is causing my orthostatic problems. And I completely agree that extra salt and water is a short term solution (and it only helps bit, nowhere near a cure). It's sort of like how it's easier for me to do things on an empty stomach, or when it's cold. It doesn't make my ability to stand still go back to normal. It just makes things that are very difficult a little bit less so.

    At any rate, if extra salt and fluids do nothing, why would so many doctors recommend this over so many years? I first heard about this back in 1995 after Dr. Rowe's medical research. A lot of mainstream doctors / organizations suggest this option.

    For example, see this video by Dysautonomia International which features several doctors:
    (treatment recommendations start at about 2:40)



    By the way, with my complete lack of medical knowledge, and inability to retain facts (brain fog), I'm really not a good person to debate this topic. I'm just passing on information. I'm hoping someone with more brainpower can provide an actual debate.

    [edited to remove my suggestion to make a new thread]
     
    Last edited: Dec 31, 2017
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This is a reasonable question but we can also ask why homeopathy has been recommended for centuries when it does no good. The fact that lots of doctors recommend something is I am afraid not very useful. Doctors used to recommend tonsillectomies or spending six weeks in bed after heart attacks or protein infusions for nephrotic syndrome and so on and so on.

    An awful lot of doctors do not really understand physiology well enough to know what to expect of a treatment. The fact that many recommend treatments that do not make physiological sense simply demonstrates the tendency to recommend things because it seems 'common sense' despite not having any evidence. Over the years I rubbed shoulders quite a lot with doctors with a special interest in 'autonomic dysfunction' and pretty much without exception they were the ones who did not really understand the physiology. There may be doctors out there who do but I strongly suspect there isn;t actually any reliable evidence for these things.

    The problem for me is that if I see a list of disinformation I feel obliged to say so. I realise that patients are posting with good intentions but if the stuff is bogus science then surely saying so needs to be mixed in with the list in order for it to convey real information?
     
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  20. MErmaid

    MErmaid Guest

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    I think looking at your recent lab work, done with fasting, is a good place to start to understand OI with ME. Are you usually low in sodium and potassium? How about calcium?

    I feel treatments need to be customized for each person, under the supervision of your doctor.
     
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