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confused ?pots/? oh/ ? normal

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by mobyjoby, Jun 17, 2012.

  1. mobyjoby


    I am waiting for a 24 hr ecg of some sort but in the meantime I am confused about my HR and BP measurements.

    I can easily go from HR 77 lying to 127 standing but it often only lasts 10 -20 seconds before going back down to say 95 or so. sometimes right back down to 78-80.
    Occasionally it has gone from say 77 t0 127 and then reduced to about 110 and stayed there for about 2 mins. This would still class as more than 30 bpm increase.
    I rang the falls and syncope unit in Newcastle where my gp might consider referring me and asked if the raise needed to be sustained and the "sister" said yes and that normal people often have an early spike which settles quickly.

    Since then, using my Blood Pressure monitor I have managed to get some very early readings of my BP when going from resting to standing which have shown a systolic drop of around 25 and a narrowing of pulse pressure to 19. I am presuming a beat by beat monitor may show a further reduction or narrowing that occured one side or other of the reading I managed to get. But if I am just a few seconds longer in geting the reading it shows as fairly normal. So this drop is also short lived.

    I have read that POTS is raised heartbeat without hypotension and that OH is BP reduction without HR increase. So does this mean what is happening with me is just normal and neither POTS or OH?

    If it is some kind of OI but lasting briefly before correcting then why do I feel lousy? Could it be that some kind of reduction in circulation elsewhere then allows the BP/HR to normalise but makes me feel bad. Also as soon as I start moving around my heart rate goes up. so just brief gentle walking around house is about 110 on a reasonable day; going upstairs is around 130+ unless I slow right down: putting shoes on or helping my kids dress can go up to 140.

    I get palpitaions and extra beats; feel dizzy on standing and light headed at other times on bad days. When I have been upright for a while particularly standing I just feel ill and want to lie flat and that eventually makes me feel a bit better. The feeling seems like a hungover/ car sick/ toxic kind of nausea and weakness.

    On days where I do a bit more than usual, my resting heart rate can go from low 70s to high 90s early 100s and stay there for hours. I also have more difficulty sleeping on these days even if exhausted.

    I seem to always want to pass urine when I stand up.

    I don't feel normal although I guess I would say I am probably mild - possibly moderate compared to lots of people. But I don't know if it is worth pursuing investigating OI if my measurements mean I have normal responses.

    Sorry it got long but I would appreciate any comments/ thoughts

  2. xchocoholic

    xchocoholic Senior Member

    Hi moby,

    I'm not sure how much help I'll be since I'm just a patient with oi.

    But ...

    Did you do the diy poor man's tilt table test (pmttt) when you were checking your hr and bp ? Meaning you stood
    completely still. I can't think of how to explain it right now, but if you're moving your blood flow / hr is altered. I started a thread called diy pmttt here if you need instructions. Just be sure to read the
    whole thread because others added some important info.

    I have / had typical oh and pots where your bp drops 20 pts after 3 minutes and your hr jumps 30 pts after
    standing for 10 minutes. Fwiw, my oh actually went away after I switched to the wahls diet in jan. Kow

    I would think that since your bp and hr normalize, you don't have it. Esp since laying down helps a bit. For me,
    there's no choice and it always works. I have to lay down flat for an hour most of the time for it to work tho.
    If I get up too soon, my hr jumps right back up to where it was when I layed down.

    The feelings you're describing can be from
    food intolerances, hypoglycemia, etc. I'd still get tested for this tho. No harm in checking out one more possibility.

    Tc.. X
  3. mobyjoby


    Thanks - its just confusing. I do get to the point where I just have to lie down and not because I want to sleep but because my body just seems to need to be flat. It does make a big difference(especially if I can do it for a couple of hours) but it doesn't get rid of my underlying feelings of being ill which are more or less constant.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque


    It sounds like a really well done TTT would make things clearer. You would need one with various autonomic tests as well as continuous ecg, HR and BP and one where they keep you tilted for 30 minutes or more. These controlled conditions could give an autonomic specialist a lot more clues as to what is happening.

    Good luck with it.
  5. mobyjoby


    Thanks Sushi,
    It would be great to get that done. Not sure where in the UK it is possible or that I could persuade my GP to refer me.
    The Newcastle unit do measurements at rest followed by an"active stand" with continuous HR and BP.
    Will see if I can find out about other places.

    I think I'm just having a bad day and feeling like maybe I am normal and just lazy. The general medical consultant I saw delivered a verdict of idiopathic chronic fatigue and said I had some but not all the hallmarks of chronic fatigue syndrome but not which ones he thinks I don't have. he never questioned me about PEM type stuff or sleep and I forgot to talk about it. So according to him I don't even meet whatever NICE guidelines definition he uses yet I think I easily do and even the Canadian/ICC definitions. If he had another explanation for how I feel that would be different - I'm not attached to being found to have ME but so far it seems to be the best fit!

    I'm feeling so poorly but thinking maybe I'm just a fraud. I guess we all have days where self pity gets the upper hand. Probably will feel different in the morning as it is not often I feel like this.
  6. xchocoholic

    xchocoholic Senior Member

    Hugs .. We all have those days. Fwiw, if I had to start trying to understand my me/cfs from the
    beginning again, I'd start with my diet. I've had this since 1990 and am shocked at how much
    better I feel now since I started addressing this in 2005.

    All of the cfs specialists I know of recommend the elimination diet but fall short of explaining the importance
    of nutrients. They also only recommend trying this for x amount of time when in reality, it's a life long
    change. Dr myhill recommends the paleo diet because it eliminates
    the common food intolerances, including gluten, dairy and soy. Personally, I like dr wahls diet.

    5htp is good for mood and sleep.

    tc .. X
  7. taniaaust1


    Sth Australia
    That used to be classified to be in the normal range so I assume unless things have changed that that still is.

    I'd check into that more as Ive never read anywhere that it has to be "sustained".. all the online info ive ever read online just says it is defined by an abnormal degree of raise...

    edit.. I just did a search and to my surprise some places do say "substained" .. Im now trying to find out "exactly" what is meant by that term in this.

    yes.. POTS diagnoses has nothing to do with what the BP is doing.

    Yes OH is diagnosed on the BP and diagnoses of it is nothing to do with what the heart is doing.

    BUT One can thou have both OH and POTS thou together.. but they are two separate diagnoses

    Anyone who has OI should have a proper tilt table test done and I too think you need to find somewhere to have one done.

    It is common for POTS patients to feel better when they lay down (sometimes it is a very rapid improvement.. other times it takes longer.... recovering from POTS crash is far easier then recovering from general ME one).

    I get the same kind of feeling from all this... along with often dizziness and sometimes a headache.. but that hungover, nausea weakness feel often in my case can happen first (thou sometimes dizziness is first for me.. it really varies).
  8. taniaaust1


    Sth Australia
    mody.. i spent a lot of time trying to research the exact POTS defination today and from what I found out it and have read in places, that there isnt actually an offically set definition of it other then that increase of over 30 beats per minute when standing .. none of the different definitons one sees arent like set defination (its like CFS with the mess there with many definitions).

    Interesting one of the major well known places which deal with POTS.. has added to their POTS definition that one also has to have an increase in plasma norepinephine. Their defination is at page 85 Table 1 http://www.ndrf.org/PDF Files/pots_raj.pdf (and that is different to nearly all others one comes across.. they also dont mention substained in their actual defination but do mention that afterwards (and that they dont consider the heart rate in the first minute of standing).

    Interesting that link above.. they say in their article that testing should be done in the morning when the issue is worst.

    The following web page from the national dysautonomnia foundation may interest you http://ndrf.org/orthostat.htm . On that page it states

    "Standing upright results in a series of reflexive bodily responses, regulated by the Autonomic Nervous System, to compensate for the effect of gravity upon the distribution of blood. These conditions are a result of an inappropriate response to this change in body position.

    The normal response for a change in body position, results in a stabilization to the upright position in approximately sixty seconds. During this process, the normal change in heart rate would include an increase in heart rate of 10 to 15 beats per minute, and an increase in diastolic pressure of 10 mm Hg, with only a slight change in systolic pressure.

    So by that it appears they also would put an increase of 30 in an abnormal catagory as from that sentence it still appears they are refering to how much raise is normal in 60 seconds when a normal body is adjusting to standing.

    I hope you manage to get tilt table tested.
  9. ahimsa

    ahimsa Sick since 1990

    Oregon, USA
    The terms used for various forms of Orthostatic Intolerance (OI) are not very consistent between different experts. Here's a quote from http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/
    (the bolding was done by me)

    There are many sources for information about OI but here are a few links that I like:

    A short overview, helpful if you ever have friends or family members who want the basics:

    A much longer overview on medscape.com by Dr. Julian Stewart

    Johns Hopkins patient handout (PDF file):

    Vanderbilt University "Autonomic Dysfunction Center"

    A patient web site that's just about POTS (not sure when it was last updated...)

    I hope this helps! It can be hard to figure things out -- I wish you all the best.
  10. xks201

    xks201 Senior Member

    I would always start by testing for urine wasting...aka diabetes insipidus. Always start with blood volume problems like low aldosterone or vasopressin...then RBC count/mass, then onto calcium supplementation for the vertigo...b vitamins...then other hormones.
  11. Sasha

    Sasha Fine, thank you

    Hi mobyjoby - the Newcastle unit have published a paper on the high % of people referred to their unit who they test and find to have non-ME but identifiable illnesses. They seem to be much better at diagnosis than the GPs referring patients to them (for supposed ME) but I don't know if they'd outperform your own consultant. It might be worth viewing them as a second opinion on your diagnosis, in addition to getting their expertise on your possible OI.

    I was referred to a local cardiologist for testing and was appalled at their lack of knowledge about OI. The Newcastle unit specialise in it.

    You are wise to try to seek an accurate diagnosis. Good luck!
  12. mobyjoby


    Thanks for all your replies.
    I'm not up to writing a long response just now but all the info and thoughts have been very useful.
    Jo x

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