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ME/CFS and POTS... are they one in the same?

Discussion in 'General ME/CFS Discussion' started by Legendrew, Dec 4, 2013.

  1. Valentijn

    Valentijn Activity Level: 3

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    Post-exertional malaise. Basically being hit hard with flu-like symptoms 24 hours or so after exertion - not just muscles that are a bit sore from being used, but body wide pain and aches, swollen/painful lymph nodes, feeling sick, etc. My GI system shuts down during a crash, so I get a lot of nausea but only because I'm constipated and there's nowhere for the food to go.
    SOC and xchocoholic like this.
  2. Legendrew

    Legendrew Content team

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    The PEM is something that I get but its more like lightheadedness when standing, internal trembling (especially when in bed at night), insomnia, headaches and stomach upset than outright fatigue. My lymph nodes do swell every now and then when I feel ill but I've read that is something that often occurs in POTS too (probably pointing to an immune element in pots). For me all of that is worse when I'm stressed or when I have a secondary illness (such as a cold). It seems difficult to break apart two such badly defined conditions but the main thing that is leading me towards POTS is the blood pooling in the feet i've noticed every now and then, heartbeat which I can literally see... (very strange sensation...) and as i've mentioned a few times the tremulousness. I've also noticed that after watching tv or playing a game from too long I feel a little lightheaded and unusual and often end up with a headache, perhaps this is a result of insufficient blood flow in the head from the upright position when more is required for the focus and concentration. Interesting if nothing else.
  3. Allyson

    Allyson *****

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    it th
  4. ahimsa

    ahimsa Senior Member

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    Hi Allyson,

    You've had 4 tests -- were all 4 of them Tilt Table Tests? If so, that's a lot! :eek:

    Or were these some other kind of test?

    I know that doctors can do a very simple test for POTS. They just have the patient stand still for 5 -10 minutes and look for increased heart rate. There may also be some change in BP. But this simple office heart rate test won't necessarily be abnormal for patients who have NMH (Neurally Mediated Hypotension, aka, neurocardiogenic syncope and other names). Some patients need a Tilt Table Test (aka, Head Up Tilt, HUT) in order to show any abnormal readings.

    My BP drop never shows up in any of the office standing tests that I've had over the years. But a dramatic BP drop (my BP suddenly plummets to just about nothing, something not measurable) happened to me on two different tilt table tests. My symptoms generally start after a few minutes whether I'm standing or on the tilt table. But it takes between 20-30 minutes before the huge BP drop happens.

    [FYI - My symptoms include nausea, dizziness, cold sweat, blurred vision, desire to move around or sit, and an increased heart rate but not always enough to be POTS, and others I've probably forgotten. These are all pre-syncope symptoms even though I never actually faint unless I'm on the tilt table test. ]

    So this has me wondering, what test has your doctor done 4 times that has been negative 3 out of 4? Just curious to know what kind of tests doctors are doing these days.
    Last edited: Dec 10, 2013
    Allyson likes this.
  5. Allyson

    Allyson *****

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    I see Professor Chris O'Callaghan at theAustin - one of MElburne big four major hospitals nd a Melbourne University professor of Medicine

    I give up - wrote a long reply twic ena lost it eadh time
    srry back ater with more energy and stamina

    Ally
  6. Allyson

    Allyson *****

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    no the pulse rate needs to be tested after a resting period - so you need to lie still in a quieit and dark room for 20 mins thenn stand up and test it straight away

    A
  7. xchocoholic

    xchocoholic Senior Member

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    There's some confusion over pots the syndrome that includes cfs symptoms and pots, postural orthostatic tachycardia.

    When I refer to pots I'm strictly speaking about the condition proven by a ttt. Hr increase of 30 pts after standing for appr 10 minutes.

    btw. My hr doesn't stabilize until I've been laying down for an hour so testing for pots
    any sooner won't catch what's really going on..

    I've been positive for oh since at least 1992 but only found out I had pots by testing myself at home. I knew I felt completely healthy is I laid down for an hour and recovering from pots explained it. Knowing this changed how I live my life now. I lay down flat as often as possible it at least get my feet up.

    tc ... x
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  8. ahimsa

    ahimsa Senior Member

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    Allyson, thanks for your response!

    The office tests I have had also were preceded by a period of lying down (maybe only 10 minutes, not 20?). So that sounds similar. But none of my office tests showed any dramatic drop in blood pressure. Whereas both of my tilt table tests showed a dramatic drop to almost nothing and I passed out. So, very different results. That's why I feel (I'm probably biased) that these office tests may be doing more harm than good.

    A tilt table test may be a better choice for many (most?) patients suspected of having orthostatic intolerance. Way back in 1995 Dr. Rowe was suggesting the same thing, at least for patients who had NMH, saying that NMH would not show up in any office tests. POTS can sometimes be detected by office tests but much more data (which may help in deciding how to treat it) is collected during a tilt table test.

    I guess I wonder how useful an office standing test is when it clearly does not show any problem so much of the time! You said that you had no abnormal readings on this test 3 out of 4 times. I've had a "negative" result (meaning no abnormal readings were seen, BP and heart rate seemed within range) on this office standing test every time! (maybe 5-6 tests?) And yet I had two "positive" tests (clearly abnormal results, not even borderline results where it depends on the doctor having a different interpretation) on the tilt table tests.

    So, I wonder how and why the test is used. It should not be used a screening test if a normal looking result makes the doctor think the patient has no problem with orthostatic intolerance.

    Wouldn't it be better to listen to a patient's history and symptoms and, if it sounds like they have symptoms of orthostatic intolerance, refer the patient for a tilt table test? Just some rambling thoughts here.

    PS. Sorry to hear you are having posting problems - that sounds frustrating....Argh!

    [edited to be more clear -- I think the words "negative" and "positive" were confusing]
    Last edited: Dec 14, 2013
  9. xchocoholic

    xchocoholic Senior Member

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    I've haven't had a negative pmttt since getting me/cfs. You may want to look at your diet, supplements and meds to see if there's a connection. I notice my oi is increased if I've taken anything that causes drowsiness.

    tc .. x
  10. ahimsa

    ahimsa Senior Member

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    Hi xchocoholic,

    Thanks for the response (I think it was for me?) but I'm confused. I figured out what "pmttt" means (poor man's tilt table test - a test done at home where you try to stand still and measure blood pressure and heart rate) but I'm not sure it's relevant for my situation. I already have a diagnosis.

    I have had two tilt table tests (actual tests on a tilt table, not just standing still in a doctor's office). Both tests showed clearly abnormal results.

    Maybe you meant that folks should periodically re-test themselves? Do you test yourself regularly in this way? Is that what you mean when you say you haven't had a negative pmttt since getting me/cfs? (and does negative mean "no abnormal results" or "no problems found"?)

    For me, I think doing this pmttt regularly would be a bad idea. It would most likely make me feel very bad, and possibly trigger a "crash" (but maybe not as bad as the real tilt table test), due to my NMH. It feels like a counterproductive way to monitor how I'm doing with my NMH treatment. As an example, the only reason my second tilt table test was even done was for my long term disability benefits claim. My doctor was actually annoyed by their request -- she said there was no medical justification for doing a second test -- but I went along with a second test so that I could get my disability benefits claim approved.

    I am currently working on treating my symptoms with a combination of prescription drugs, supplements, and lifestyle changes (avoiding NMH triggers plus resting). I don't take any medications that cause drowsiness.

    Anyway, sorry for the confusion--maybe the response was meant for someone else.
    Last edited: Dec 14, 2013
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  11. xchocoholic

    xchocoholic Senior Member

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    lol. i blame pem for my post. I'm sorry if I confused the issue here.

    i mean i always have oh during a pmttt. np drops 20 pts within 3 minutes.

    gotta rest. x
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  12. ahimsa

    ahimsa Senior Member

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    Hey, don't blame yourself! I'm very easily confused! :D

    I'm sorry that you're still having BP drops. I guess the pmttt is a useful test for you.

    Unfortunately, my BP drop is a lot more delayed. My body seems to do everything it can to keep it from dropping. So I get all the pre-syncope (pre-fainting) symptoms within a few minutes but the dramatic plummet in BP does not happen until 20-30 minutes later.

    The main point I was making is that there are patients out there (there's at least one -- me! -- but probably many others ;)) who would test "normal" on the pmttt or any standing test in the doctor's office. And yet these patients may have significant problems with OI (Orthostatic Intolerance). Hence my concern that doctors and patients can be misled by these very basic tests. Some patients may need a real tilt table test (TTT) in order to get an accurate diagnosis.

    I don't think a TTT is needed for all patients in all cases. Some doctors will treat OI based on the patient's symptoms.

    But it seems wrong to rule out all types of OI (esp. Neurally Mediated Hypotension, also called Neurocardiogenic Syncope, Vasovagal Syncope, etc) based on these simple tests.
  13. SOC

    SOC Moderator and Senior Member

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    Count me in! I'm one of the delayed BP rxn people. My OI isn't caught on shorter tests, but is clear on longer ones. Our cardio did a TTT on my daughter because he didn't believe "CFS" included OI. Her test convinced him, though. ;) He didn't even make me do a TTT, and treats me based on symptoms.

    My OI diagnosis -- and treatment that gave me a big increase in functionality -- was delayed for years because simple or short tests didn't catch it. :mad: So I agree ruling out all types of OI based on those tests is wrong. It's like they do it backwards. If you fail the simple test, it should be clear you have OI and shouldn't have to suffer from a long TTT. If you have symptoms, but pass the simple tests, then the more sophisticated test would be in order... wouldn't you think? o_O
  14. Allyson

    Allyson *****

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    my specialist said you may have OI and Not show any measurable drop in BP til you are in your 80 s - years that is


    ou can buy a good BP machine for about 50 dollars now and test yourself at home - no need to stay upright for ling time if that will cause a crash

    eg do your BP on awakening and again on standing then at 1-2 min inntervals for 5- 10 mins after that

    that will also show if your RESTING pulse goes up by 30 BPM on standing


    the first time mine showed up as a drop I had been resting quietly for a good 15 mins before the first BP measure

    the first attempt to measure my BP on standing the Machine went haywire and alarmed so it took 2 - 3 mins to get the first actual standing reading which as 20 mm lower than my lying one - so the alarmed reading may have been even lower - by the next read a minute later the BP had corrected itself up to normal - lots of adrenaline!

    Ally

    A
    Last edited: Dec 17, 2013
  15. Allyson

    Allyson *****

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    and that is one reason why I suggest doing the PPTTT - or equivalent !several times - but no need for it to be for 30 mins 5 - 10 mins upright is enough. (Poor PERSON'S tilt table test)


    also I never have swollen lymph nodes for the record, whether I have PEM or not; any one who does may want to rule out LYme IMO
  16. SOC

    SOC Moderator and Senior Member

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    That's exactly the kind of test that doesn't catch my OI. I'm sure it works fine for more classic types, but some of us have a delayed reaction that takes a longer time standing to show up.
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  17. ahimsa

    ahimsa Senior Member

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    Ditto. None of these simple tests ever show any problems for me.

    @Allyson, I'm so glad these tests work for you. And these tests work for a subset of patients. But (I'm sorry to repeat this so often!) there is a set of patients with OI who do not show any abnormalities on these simple standing tests. That includes the "poor man's tilt table test."

    For me, simple standing tests = nothing. TTT = huge drop in blood pressure. I don't know how to make that any clearer.

    Also, 5-10 minutes upright is not long enough even for the TTT. Recommendations range from 30-45 minutes for the first phase of the TTT (the passive part of the tilt test, before any drug is given to induce symptoms).

    I think I'm missing something. This quote makes it sound like your specialist agrees that standing tests are not useful for a subset of patients who have Orthostatic Intolerance. Does your specialist ever use a Tilt Table Test (TTT) as part of the diagnostic work-up? I was only 34 during my first TTT (nowhere near 80!) and I had a huge drop in blood pressure.

    (quick tip for online searches - TTT is often listed as HUT, Head Up Tilt, in medical journals)
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  18. Allyson

    Allyson *****

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    yes I am agreeing with you- he said many do not show a measurable drop in BP even thought they DO have OI

    mine showed no drp on 3tests
    but on the fourth one it did

    what I am saying is that the testing is often not done correctly

    itisnot done form a true resting initial reading so a drop wil nt show as we already have an adrenaline surge happening when the testing occurs

    we already have many stresors forma trip to hosopital , wsiiting wating, elevators, bright lights
    so unless we are rested and calm fully and completely throughtout the process we are not just testig the positional changes but other factors that affect BP are present as well
    also do the tests control for things like compression clothing and ambient temperature?
    these also affect our BP

    so I f you are wearing ay compression type sports gear during the test you may get not drop - which you may do with no supports

    likewise if the test is done in cool room you may get no drop but on a very hot day you may - heat intolerance results from this difficulty to adapt to heat

    likewise hydration status - if you are dry you may show a drop - if you just had IV saline hydration you probably won't

    A
    Last edited: Dec 18, 2013
  19. Allyson

    Allyson *****

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    yes Soc and so many of us have never been tested for POTs at all there is so much unknown still

    it is only when more of us get tested - and several times - that we will have any data on this

    any person's blood pressure varies a lot at diiff times and in different circumstances

    on cardiologist got my as having HIGH BP when it is usually 120/75 maximum - she tired to prescribe me anti hypertensives as a resut of 10 consecutive BP readings showing high - effectively a PPTTT. but she had made my BP go up by insulting me, saying she did not believe in "CFS" and asking intrusive questions and making a psych diagnosis - "it's all in your head" ! as she took the readings !


    A
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    :aghhh: What an idiot!

    It is advisable not to talk while having your BP tested, but I have often had docs and nurses asking me questions during the test! It must also be the case that they should shut the **** up while doing the test unless they are saying neutral things.

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