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POTS or what, based on these heart rate figures?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sasha, Nov 5, 2012.

  1. Sasha

    Sasha Fine, thank you

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    That's my question, really - is that heart rate pattern normal? It wasn't that it jumped up to 106 and stayed there for half an hour - it was that it was rising, and rising, and rising... and 35bpm above baseline after half an hour.

    It would be great not to have OI but not so great to have it and not know I've got it and miss a chance of treatment... not that there's necessarily a good treatment...

    Glad you're doing well on your allergy meds. I'm on MAF 878 and am hoping that it might tackle whatever issue this is.
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    That does make it harder. I figured that. Goes so fast when you can just find the best doctor yourself. I hope you get help soon.
  3. Sasha

    Sasha Fine, thank you

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    Thanks! Will have to give this one some thought. :)
  4. xchocoholic

    xchocoholic Senior Member

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    Hi,

    I've never been able to stand up past ten minutes during a pmttt so I don't know if it's supposed to keep climbing.
    I wonder how many people dx with oi can stand up past 10 minutes .. Granted, we're the ones easily dx with oi so we've
    never had to think about this. Sorry, I got off track .. Lol ..

    I was suggesting you lay down longer prior to doing the pmttt. My numbers are very different if I lay
    down and let my body stabilize first. That's one of the benefits of having your own bp / hr cuff.

    My hr is normal for at least 8 minutes after standing during a pmttt. Then it races up to the 120 range and
    I have a petite mal and sob. Then I can be wiped out for a few hours. When I'm not doing a diy pmttt, I typically lay down before I get a full petite mal and sob.

    Does laying down make you feel better ? If so, how long after laying down do you feel healthy ?
    Laying down is the one thing I know that alleviates my cfs brain fog symptoms and heavy feeling most of the time.

    Tc .. X
  5. taniaaust1

    taniaaust1 Senior Member

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    umm is that heart rate pattern normal or not if it has a delayed response and keeps increasing.. I myself dont know.
    *note some doctors/researchers test for POTS over a 12 min period and not 10 min.

    20mins lay down time if you were relaxing, should of been plenty for most to then do a test from there (its just a case of making sure the heart rate is stable before starting the test.. some autonomic specialists only have people lay and relax with eyes shut for 10 mins before testing.. I personally find that my heart rate dont always stabilise in 10 mins thou does much of the time).

    I do suggest to do the poor mans POTS test on a few more occassions in your case (making very sure you arent wiggling toes or moving), as sometimes POTS may not show and other times it may (it may not always be consistant).. and I dont know if that increase after that amount of time is normal or not so suggest to do it again (maybe at a couple of different times of the day or on one of your worser days). Stop the POTS test at the 12min mark. (if you are testing for BP problems thou, standing test needs to be longer)

    There is also several different kinds of OI issues.. so thou you may not have POTS causing the OI.. you could have one of the BP OI issues. One thing about POTS I like, is that unlike CFS it is testable and if you have it, it should show up. If you cant see POTS on your poor mans tests, I myself wouldnt suggest asking a doctor for a TTT for suspected POTS. (Ive never had a TTT but find my heart rate does up to a 67 beat per minute increase on poor mans test as long as I havent been sculling a lot of water just before the test to ward off the symptoms). Maybe a TTT thou would be good to look for other orthostatic issues.
  6. taniaaust1

    taniaaust1 Senior Member

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    Note.. if anyone is taking measurements that often.. it could interfere with the test by a person doing too much movement each time one is taking the measurement, movement can stuff up the test. It would be better if ones arm is resting up with another taking the readings and writing them down if the readings were being taken that often. (on proper tilt table testing..the person isnt to be moving around at all).
  7. taniaaust1

    taniaaust1 Senior Member

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    Sounds like you do have mild POTS then ... some wont diagnose it without POTS symptoms. There are also some which dont diagnose POTS unless one has higher then norm adrenaline/nor adrenaline level as well and have that as part of the diagnostic criteria (that's a stricter POTS defination then the standard one..over time they do seem to be getting stricter with the POTS definations.. originally one just needed a heart rate increase of 25. then that got moved to 30).

    POTS people have the tendancy to suffer from dizziness. Salt and water loading often does help POTS people a t least a bit if one drinks more then peeing out (thou if one had the hyper kind of POTS rather then the low blood volume kind, it may not). I pee out too but if Im constantly drinking (eg drinking in my case if I drink a glass every 15mins).. I do pee right out.. but the blood volume starts to get boosted if body has a "constant supply" of fluid going to it. Unfortuanately it is unpractical and dangerous to keep drinking that amount and hence drugs are used to help stop the pee out.

    Blood volume is usualy only tested in research labs. There are also some common signs of low blood volume eg thirst and needing to drink more then is usual. Dizziness caused by lack of blood volume getting to the brain. From the symptoms alone one can usually tell if one has a low blood volume issue (I clearly knew I had POTS even before I did poor mans test to see it.. POTS symptoms with POTS triggers setting my symptoms off eg heat, raising the arms above the head can trigger POTS in some etc etc). In low blood volume POTS, standing is worst then walking as walking helps to move the blood to the brain which dont happen with standing..

    There can also be quite a relief and symptom shift when one lays down ..thou other orthostatic issues too may feel that symptom relief on laying so this doesnt necessarily indicate POTS. (POTS recovery happens far faster then ME recovery).
  8. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    I only picked up in the fact that my hr would go right back up to my pots hr (120 ish) if I got up before at least an
    hour after I had a pots episode by testing for this. I kept trying to get up before an hour was up and felt just as bad as I did
    prior to my pots episode and had to lay back down.

    Before doing the diy pmttt I didn't know what the heck was going on. I would just say that my cfs was bad today. Duh ! Elevated hr, petite mal and sob is a much clearer picture.

    My pots episodes include having a petite mal and sob so the time it takes my body
    to undo these is what it is. Somedays it takes an hour sometimes longer. Never less tho.

    A rushed ttt where I wasn't allowed an hour to recover first would have different outcomes. For one, if I'd just had a pots episode before the test, they'd think my resting hr was around 120. I understand they're only goal is to run the ttt so they can get paid so I doubt they would allow this. But at least I know this and I can tell my doctors this now. Do they care ? Probably not .. Lol .. Tc .. x
    Sasha and taniaaust1 like this.
  9. taniaaust1

    taniaaust1 Senior Member

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    That probably happens to me too.. I tend to need to lay after pots episode longer then I feel like I actually have to as I can get the POTS coming back real fast otherwise. I actually often lay for few hours after a bad POTS eposide (thou will start getting relief right away when I lay). (a POTS crash one day, ive found can cause a ME crash the next day too.. this took me 5 years to realise)

    nods and that is why they say the heart rate needs to be at a stable point when laying before POTS testing... one needs to lay till that occurs. When a so called autonomic specialist did a POTS poor man test on me.. what she did is she left me laying for 10 mins (eyes shut relaxed, she told me to think relaxing thoughts) and then she came back and took my heart/BP .. then she took again after 3-4 mins to see if it was stable yet (she was going to do that every 3-4 mins until it was stable). It was so she then did the test.

    (that poors test thou my POTS nearly always shows on a test done at home, it was a flop as what I didnt know at that time and obviously she didnt know either is that one shouldnt be sculling a lot of water right before doing a POTS test as it can stop the POTS from showing up.. I drink 12 glasses of water during the 3 hrs before I got there, like Im used to doing so I can usually get anywhere (as long as I wont be long) without dizziness and POTS symptoms occuring.. doh.. I didnt think about the boost in blood volume interfering with the POTS test).

    People doing POTS tests really need to know what they are doing.. Ive noticed that some places which TTT for POTS now give out guidelines so patients know not to do what I did which ruined my standing poor mans test.
    Sasha likes this.
  10. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    Yep, 10 minutes of thinking happy thoughts is all anyone needs to get over a pots episode / hypoperfusion or stop
    a petite mal and sob. Lol..

    My hr stabilizes after I lay down long before my petite mal, etc are over. I'm assuming it's hypoperfusion from oi
    causing the delay in my recovery.

    Simply measuring someone's hr doesn't give a clear picture of how their hearts
    or other organs are working after hypoperfusion. Once our upper organs start struggling for everything blood brings and takes
    away, they need time to address the damage.

    If just getting over having a foot fall asleep from loss of blood
    takes time and is so painful, imagine what our upper organs must be going thru. These are much more complicated
    than a foot.

    If you add a petite mal or sob, that adds another level of complication for the body to unravel.

    It amazes me how little medical professionals know about their own areas of expertise. Lol.

    Why are you drinking so much water ? It depletes electrolytes.

    Tc .. X
    Sasha likes this.
  11. xchocoholic

    xchocoholic Senior Member

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    Hi again,

    I forgot to say dr peckerman explains how hypoperfusion from oi can cause a lot of cfs symptoms.
    The article is here. Just search for peckerman. Or you can google peckerman cfs hypoperfusion.

    His info really helped me piece together why I feel like crap. Tc .. X
  12. Sasha

    Sasha Fine, thank you

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    Hi x - maybe if I've really got OI it should be obvious like it is with you and some (all?) of the other people who post about POTS/OI on PR - I don't recognise my experience as being the same because I can be upright for longer, don't get immediate/almost immediate symptoms on being upright, don't faint or get dizzy, etc. Maybe I plain old just don't have it.

    I lie down roughly every hour for 15 mins and that's usually enough to get me back to baseline. Maybe I'm recharging my mitochondria or something rather than reperfusing my circulation. I didn't feel particularly ill after the PMTT although I had some bug and felt horrible before I started and horrible when I finished so it was a question of differentiating between degrees of horrible.
  13. Sasha

    Sasha Fine, thank you

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    Thanks, Tania, that's a good idea to repeat the test at home a few times. I didn't realise it wouldn't necessarily show up all the time.

    Good point about the other kinds of OI issues. What's got me stuck is that the HR pattern I showed already in the PMTT looks weird and yet it's being called normal so even if I do some more self-testing and show some more funny patterns, I'm not sure it's going to get me a diagnosis. Maybe I shouldn't have a diagnosis: maybe I haven't got OI. Just don't know.
  14. Sasha

    Sasha Fine, thank you

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    Yes, arms above head is a problem for me, I'd forgotten that - another reason I thought I'd got POTS.

    Maybe you're right that I've got mild POTS - I'd been thinking of it as black and white and obviously the criterion is a manmade one on a continuum of HR changes. Maybe it's too mild to get a diagnosis. Certainly I use the countermeasures automatically (avoiding standing, sitting with legs crossed, keeping my arms low, etc.).
  15. Sasha

    Sasha Fine, thank you

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    That's interesting! Here's the link:

    http://www.cfids.org/archives/2003rr/2003-rr2-article01.asp
  16. xchocoholic

    xchocoholic Senior Member

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    Oh good, you found it. Did you google hypoperfusion yet ? I thought wiki was good years ago.


    Arms over head was a problem for me when I had ataxia but not now. Dr Hadjivassilou explains this
    as a part of gluten ataxia. This can be found in theglutenfile or by googling. This may be what you have.

    Did you
    have a rhomberg ? It's a neuro test where you stand up, arms out and eyes closed. And see if you fall
    over. Don't try this by yourself just in case. I used to fall immediately but I haven't since 2006.

    He also includes ocular ataxia as a common symptom of gluten ataxia. Within days or weeks
    of my ataxia disappearing, 1 year post gfcfsf etc diet, my arms were fine and I could wash my hair without
    taking breaks. Same for my vision being off focus esp when walking. My legs felt like they weighed a ton too and my r foot would drop.

    I'm finding out that I still fall over
    from time to time. Anything that makes me drowsy, like benadryl, brings it on. I don't realize I'm off balance
    until I've hit a wall or trip. Lol. I can laugh now but this wasn't funny before it went away or before I knew what it was.
    I just chalked this symptom up to "cfs". Duh ! I can't believe how the info on cfs lacks all these details.

    I hope all this is helping you decide if you have oi or not. Did you look at nmh ? I understand it's different than
    oh or pots but I don't know the details. Someone explained it in my diy pmttt thread tho.

    Tc .. X

    Eta. I'm going back to sleep. I'm not sure what's been waking me up the last couple of nites but I took more klonopin. : )
    Sasha likes this.
  17. Sasha

    Sasha Fine, thank you

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    Thanks, x, I'll look into all this.

    Sleep well!
  18. taniaaust1

    taniaaust1 Senior Member

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    I had all the symptoms mentioned above diagnosed ataxia, positive rombergs and all the reest mentiond there.. but they all went away themselves over time (cant rememeber how long now.. maybe 2 or so years). Just wanted to say that as from my experience just the ME can cause all that to happen to which can go away itself.
    Sasha likes this.
  19. Sasha

    Sasha Fine, thank you

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    Having looked at this I don't have ataxia and I don't think I'd have a positive Rhomberg's - I saw a documentary a few weeks ago where they were testing a guy's health for his age and had him stand on one leg with his eyes shut - I could do it for 30 secs easy and could have kept going forever.

    I had a ten-year remission before this relapse and all my symptoms went away (apart from flare-ups which I thought were colds and turned out not to be). All I need is a remission!
  20. xchocoholic

    xchocoholic Senior Member

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    Hi tan,

    Congrats. From what I've seen on the ataxia forum, you were lucky. Of course, they wouldn't be on a forum
    if their ataxia had gone away. These people have a lot of our symptoms.

    How consistent were your tests ? How many years were you positive ? Did you have a motorized cart ?

    I'd test positive nowadays on a bad day now but I was positive 24/7 from 1990 up until Sept 2006.

    Maybe this is the criteria for someone with permanent ataxia. Aka more likely to respond
    to the gf diet. The damage to the cerebellum takes time to reverse if it's going to. I've met quite a few
    who were positive for gluten antibodies who didn't respond.

    Tc .. X

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