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POTS info webpage useful basics

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Allyson, Feb 28, 2013.

  1. Allyson

    Allyson Senior Member

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    I think this has been posted elswhere but it is a very good and comprehensive so worth re-posting

    Website: If you are looking for detailed information on Dysautonomia/POTS gottaycheck it out !!

    www.dinet.org/symptoms.htm

    cheers
    Ally
    sianrecovery likes this.
  2. xchocoholic

    xchocoholic Senior Member

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    I'm not a fan of this pots definition. It's leading patients to think that any symptom they're
    having is due to pots the syndrome. When actually many of those symptoms are from treatable
    problems. The digestive problems are seriously misunderstood. Many of us have food intolerances
    which is treatable via diet. But most of my neuro problems were from gluten too.

    I prefer thinking of pots as just a 30 pt increase in hr after standing up for 10 minutes as proven
    by the ttt. And of
    course there will be symptoms that accompany an increase in one's heartrate or the reason one's
    Hr made that jump to begin with.

    Tc .. X
  3. taniaaust1

    taniaaust1 Senior Member

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    The dinet site doesnt define POTS by that page, that page is just a symptom list. (the site explains elsewhere how POTS is defined.

    Ive found that by treating my POTS some.. it has helped with quite a few different symptoms.. eg less nausea, less headaches, less weakness, less tremors, less tiredness, no dizziness. POTS also puts my noradrenaline up and all that improvement is just from my POTS being half treated. Many of us suffer from LOTS of POTS symptoms for years before discovering they are due to the POTS.

    POTS can and often does cause many different symptoms. If a person has POTS symptoms from POTS, they are usually only really treatable throu treating the POTS.
    WendyM, Allyson, golden and 1 other person like this.
  4. lnester7

    lnester7 Seven

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    I am so glad this is been talked about, I wish people look into it too. So many are symptomatic and told they don't have it like in my case. I am glad I didn't take a no for an answer and ask for one month trial!!!
    SOC likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    I'm not sure what you're saying. That page does say it's the definitiin of pots the syndrome. It's
    not pots the condition identified as a 30 pt increase in hr during ttt. And many of those symptoms they're
    referring to can be from food intolerances, bad bacteria, etc.

    It's a wastebasket dx just like cfs. They never look for causes for symptoms.
    This is where integrative / functional doctors come in. They realize symptoms can have treatable root causes.

    Several of us at the dinet forum have been trying to make this clear for others for years now. Tc .. X
  6. ramakentesh

    ramakentesh Senior Member

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    I dont agree that POTS is a 'waste basket' diagnosis. Unlike many other conditions associated with CFS there are repeatable and measureable abnormalities in POTS patients. Elevated angiotensin II, decreased aldosterone, small fibre neuropathies and reduced norepinephrine transporter function.
    And unlike nebulus theories from 'intergrative medicine' about leaky guts and food intolerances, these fidings have been published in reputable medical journals subject to strict peer review protocols.
    SOC, Allyson and Questus like this.
  7. xchocoholic

    xchocoholic Senior Member

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    Hi ram,

    Maybe we differ on the definition of a wastebasket dx. I consider it that because
    so many of the conditions listed on this page are treatable and unrelated but
    this definition doesn't explain that. It's misleading.

    Take any large group of people and you'll find commonalities. That doesn't mean there's a trend.

    So those markers you mentioned, what causes those ? If I remember correctly these correlate with
    pots proven by ttt not pots the syndrome. Tc .. X
  8. ramakentesh

    ramakentesh Senior Member

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    Most of the conditions listed on that page rarely cause POTS. Most of the causes of POTS are still undetermined but progress is being made.
    Allyson likes this.
  9. ramakentesh

    ramakentesh Senior Member

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    The markers I mentioned seem to be:

    Abnormal QSART sudomotor results suggesting small fibre neuropathy (and by inference neuropathic POTS);
    elevated serum angiotensin II/Low aldosterone as found in a subset of the hypovolumic/low flow POTS subset;
    Reduced cardiac MIBG reuptake suggesting Norepinephrine transporter deficiency.
    Allyson likes this.
  10. xchocoholic

    xchocoholic Senior Member

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    HI ram,

    I'm sorry but I'm really too tired still from Levafloxin damage to keep up with this thread. I can't seem to understand much of what I read anymore.

    But I googled qsart and saw that it was related to sweating. My ability to sweat returned to normal about 5 years ago. I can't imagine this isn't seen in a lot of patients not just potsies. I'm too tired to verify this tho.

    I'm going to pass on googling the other results you mentioned.

    My point was that pots the syndrome is full of symptoms that can be true for most of the population. And can be treated by eliminating toxins like junk food or chemicals or foods people are intolerant of. Or by testing and treating bad bacteria or parasites. Or by treating nutritional deficiencies. Or hormone imbalances.

    Now that I've eliminated most of these symptoms via diet, etc I think this is obvious by just looking at the list of symptoms. I think you'll find this is true for others who've gone down the healing path I have. There are plenty of stories on the web about this now.

    I'm not saying I cured my pots (30 pt hr jump during ttt) just the other symptoms listed here.

    tc .. x
  11. Allyson

    Allyson Senior Member

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    Thanks for the useful info, Ram.

    I would add here though that IBS has been studied and documented by univeristy research at Monash / Box Hill
    I took part in a randomised double blind trial for them and they were very thorough; not sure if the results have been written up yet but I know the dietician Sue Shepherd has written some great and very helpful books based on this research. I was referred to them by the coeliac clinic at Royal Melbourne Hospital which I would also highly recommend.

    Ans I know I became so ill on the "induce IBS" diet - high in brocolli, apples, pears, grapes caulifower etc - that I had to stop it .....while the other diet did not make me ill.

    Whether treating the IBS helps the POTS though - no they were not making that connection, just looking at IBS.
    But a diet to avoid IBS symptoms cam ae you less ill overall, and they have demonstrated that - not just for ME/EDS patients.
  12. Allyson

    Allyson Senior Member

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    Thanks for this Ram, cam we be tested then for this kind of thing do you know?
  13. Allyson

    Allyson Senior Member

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    HMmm but many symptoms ARE likely from POTS/OI/

    treating the digestive issues say by low FODMAPS diet will not alter the fact that if you stand up and walk around slowly on a hot day, say , you will crash badly the next day or soon after...as well as feeling pretty crapola at the tie if you stand up long enough. Treating IBS or food intolerances will never reverse that IMHO.

    I think the EDS theory covers it for many - The viens are not elasticy enough so they don t get vblod back to the heart and brain, and no amount of dietary care will prevent that. Gutissues may e related - the gut wall is also connective tissue - but i dont see how they can cause the POTs problems. I think a high protein diet may helpin building better collage an thus stronnger blood vessels but it needs to be persistently high in my experience - high protein every day.
  14. xchocoholic

    xchocoholic Senior Member

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    They're aren't any studies on the effects of dietary changes on most diseases because there's no
    money in it. Most studes being conducted are in the hopes of finding a patentable drug. And
    typically are full of holes. Or they lie about the results. Just one obviuos example is that exercise is recommended for pots. But there are articles on the web about this too.

    I don't feel bad from getting hot anymore but I still have pots the 30 pt hr jump after ten minutes. I started sweating normally about 5 years ago. It was after I went on the paleo / low oxalate diet but I'd been gfcfsf + toxin free for 2 years already and most of my neuro symptoms were gone.

    If you look at the posts at celiac dot com or other websites where people are reversing their symptoms
    via diet change you'll see what I'm talking about. Imho, it's obvious. BUT keep in mind that these people may say that they were tired or light headed or needed to lay down frequently NOT realizing they had oi. How many doctors would do a pmttt on a patient who complained of being light headed, tired or needed to lay down frequently ?

    When I first started going to my celiac support group meetings I heard many of them say their balance was off too until they were gf. That was probably gluten ataxia. But you won't see that if you google celiac disease. Most doctors aren't taught this and many of them are not smart enough to listen to their patients.

    For 16 years I blamed all of my symptoms on CFS despite my oh (orthostatic hypotension) dx. My dr didn't bother to do a pmttt for pots just for oh. And no one explained how that worked. I had too figure this out by googling oi.

    Learning that I had pots and laying down would eliminate my symptoms has helped me tremendously. I'm symptom free after laying down. Typically it takes an hour tho if I've pushed myself. I can tell becuase I start to shake when I finally lay down and the blood gets back into my heart, lungs, brain, etc.

    Our specialists are telling people to lay down for 15 minutes prior to do a pmttt but that's not going to work for everyone. Dr peckerman has a great article on hypoperfusion which explains why laying down for 15 minutes won't work for everyone.

    The nih states cfs can actually be misdiagnosed celiac disease tho. That was in 2006. And gluten is an ingredient found in food.

    FWIW, please don't get sucked up into believing traditional medicine is always right like I did. They're trained by big pharma to dispense drugs not heal patients.

    Tc .. X
    Valentijn and golden like this.
  15. ramakentesh

    ramakentesh Senior Member

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    There is no peer reviewed research that suggests that POTS in many or any cases is caused by junk food, toxins, food intolerances, bad bacteria, parasites, nutritional deficiencies.

    POTS is simply a disorder of neurovascular circulatory control. its the second most common neurovascular disorder. However the neurovasculare system and the endothelium are highly complex.

    QSART abnormalities demonstrate small fiber neuropathies via abnormal acetylcholine-mediated sweating. This is a finding in approximately half to a third of POTS patients and has been inferred to represent a selective autonomic neuropathy (neuropathic POTS).

    More recently a major subset of POTS patients were found to have elevated angiotensin II (a peptide) in some POTS patients who also have low aldosterone and low blood volume. This type of POTS has been termed 'Low Flow POTS'

    Some researchers have also suggested an epigenetic mechanism - gene silencing of the norepinephrine transporter protein in a subset of POTS.

    There may be other etiologies being investigated.

    So I guess my point is research is slowly drawing a picture of the causal factors in POTS. Neuropathy could be autoimmune or pro-inflammatory cytokine mediated - and potentially here one could make a guess that diatery factors and stress may play a role in potentiating autoimmunity but even that statement is conjectural.
    ahimsa likes this.
  16. ramakentesh

    ramakentesh Senior Member

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    I think symptoms of orthostatic intolerance are a major factor in many cases of ME/CFS. Most patients have autonomic symptoms and perhaps higher markers of central sympathetic activation and sympathetic-mediated increases in pro-inflammatory cytokines may cause many of the flu-like symptoms.
    ahimsa likes this.
  17. ramakentesh

    ramakentesh Senior Member

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    I think now days that traditional medicine will eventually have the answers but patients are so used to running their own research and investigation that they will be too busy professing their own views.

    I can understand many long suffering patients are jaded by past medical treatment in relation to these disorders but patience is a virtue and in the last ten years the amount of research focus on POTS/OI is massive.

    But one has to be careful about closing their mind to views that dont fit their preconceived ideas about what might be causing an illness.
  18. voner

    voner Senior Member

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    ramakentesh,

    I would like to educate my doctor on "abnormal acetylcholine-mediated sweating." He is not clued into the actions of acetylcholine and POTS. Can you cite a reference for two that I can look up at my local university's library and give to my doctor? I am hoping to push them to give a trial of Mestinon.
  19. xchocoholic

    xchocoholic Senior Member

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    Patients professing their own views aka experiences is helping change the way the medical profession is looking at diet and toxins as a possible causes of many illnesses. My goal has been to inform patients as we're the ones most likely to be interested in our health.

    I found the info in "theglutenfile" on the web back in 2006 and yet our medical profession has yet to totally embrace it. I'm soooooo happy that I didn't wait for them. :D As are all the other patients who haven't waited for the medical profession to recognize how foods and toxins affect our bodies.

    tc ... x
    ramakentesh likes this.
  20. ramakentesh

    ramakentesh Senior Member

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    You aren't dizzyceliac on another forum by any chance? The information being gluten ataxia?

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