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Do I have POTS - (vid/pics) - where do I go from here? (very long post)

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Apple, Jan 26, 2013.

  1. sandgroper

    sandgroper

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    west australia
    Can you tell me more about the less fluid thing....I am fluid loading for POTS issues but i have EDS, so I am curious...sometimes I crave salt and sometimes I don't. My bp went up on florinef but my symptoms did not improve.
     
  2. MishMash

    MishMash *****

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    Georgia
    According to Dr. Bell, the whole Florinef, salt loading, drinking water protocol has had a "mixed" record. That was back in 1990. Not that it hasn't helped some people. But i felt, for me, that Florinef was too much like taking an actual stimulant (like Ritalin), and maybe that was the reason some people were getting benefit. It was just charging up your CNS. But that's just my experience.

    The "brain fluid" theory, I discussed above, assumes that you have compromised neural fluid ducts. They are weak, floppy, get kinked, stenosis, because your tissue is weak, becuse you have EDS. So when that happens, the brain fluid backs up in the brain, and you end up with "idiopathic intracranial hypertension" (IIH) or too much fluid pressure squeezing on your brain.

    According to an iron law of neurology (Monro-Kellie Hypothesis) you brain can only tolerate so much content: be it brain fluid, tissue, or blood. If you have too much brain fluid pressure, due to IIH, then your body will instinctively cut back on the flow of blood ot your brain.

    It's just common sense: your brain is like a sealed box, and if you try and overfill it with stuff, it is going to crack, or start leaking somewhere. http://en.wikipedia.org/wiki/Monro-Kellie_rule#The_Monro-Kellie_hypothesis

    Patients with IIH sometimes show a flattened pituitary gland (Empty Sella Syndrome), because the hyper-pressure on the gland squashed it flat. Usually these patients are obese women. But former owner of this website, Cort Johnson (not an obese female) had it, and he wondered if it had something to do with CFS. Many other patients posted they had ESS also. It does seem to have some correlation with many CFS symptoms.
    http://forums.phoenixrising.me/index.php?threads/empty-sella-syndrome-and-cfs-a-patient-study.8616/

    Dr. Driscoll has, on her website (prettyill.com) has recommended a trial with the diuretic Diamox. Diamox is used regularly by opthamologists for glaucoma patients, because it shrinks the aqueous solution in the eyeball. So there's no doubt it dries out orbital vessels above your neck. It will shrink the brain fluid in your cranium. Within in a week, NASA research has found, your brain will have replaced excess brain fluid with cerebral blood. They learned this from returning astronauts.

    The virtues of trying the Diamox protocol are: it is very cheap, it is non-narcotic, it is a proven diuretic, and if it doesn't work for you, you can quit anytime. There are no tens of thousands to be paid ot specialist docs, or extremely expensive exotic meds that you have to pay for. The key to a Diamox is to start with very small doses, and try and keep your body alkaline, because Diamox seems to work best in a alkaline body.
     
  3. sandgroper

    sandgroper

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    west australia
    thanks....I do vaguely recall trying diamox at one stage and i think it made me ill but that was many years ago...interestingly i have not had so much of the pressure in the head feeling lately but i might try cutting back on the fluids...I think that you are saying fluids are not good?

    will need to reread but wanted to thank you for the post
     
  4. Allyson

    Allyson *****

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    Australia, Melbourne
    thanks so much for this ahimsa

    it is a great basic resource

    but the layout is not very good or is that just my laptop? very large print and you have to keep closing out to go back?

    I might post it onto the EDS link if that is OK

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/#post-310872

    I had the spelling in the link title corrected so the link Mishmash posted may be wrong now - if so try this one.
     
  5. Apple

    Apple

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    Hi thanks for all your responses. I've had a busy couple of months (relatively speaking) so the POTS issue took a bit of a backseat for a while.

    An update:

    I finally saw a cardiologist today, and he is pretty sure that I do have POTS. He seemed quite excited/pleased with himself that he came to that diagnosis. But he is not going to do anything about it.

    I simply have another damn syndrome attached to my name and I just have to learn to live with it. No meds. He just encouraged me to pace(I'm a big boom and bust-er), drink 2L a day (already do) and eat salt (already do) and hopefully I will grow out of it (!)

    I'm having a 48 hour holter monitor put on next week, and at my request - an echo. But he said that he doesn't expect to find anything other than confirmation of POTS.

    I know many of you have left some helpful, interesting replies. I am super grateful for any advice that's been given and when I recover from this outing (may take a while) I will have a good old read to recap and educate myself so thank you. ❤

    I have to say I am pretty disappointed with the lack of medical help available, yet again.
     
    Valentijn, ahimsa and Allyson like this.
  6. Allyson

    Allyson *****

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    Australia, Melbourne


    Hi Apple

    sorry to hear of your porblems - your ability sounds similar to mine,

    treatments for OI include flurinef and midrodinne - flurinef did not work for me and my BP was too high to use midrodine - evenr though I have OI

    also high salt diet - elctrolyte drinks
    Im vit b12 may help and vit C



    have you any of theses sympomt as well could i ask - you or close famly members?

    asthma excema hay fever diverticulitis varicose vines migraines reflux easy bleeding and bruising
    and can nayone touh their nose with theri tongue?
    these can be siiggns of EDS in the family and POTS/OI is ommon symptom of EDS too.

    best,
    Ally
     
  7. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    CA
    Hi Ally,
    I don't know if anyone got back to you on this, but your symptoms are in line with Mast Cell Activation Disorder, which is often linked with EDS and POTS. Dr. Anne Maitland does a great video presentation about it here .

     

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