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Please help with chart before I see GP for cardio ref

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Shell, Sep 28, 2012.

  1. Shell

    Shell Senior Member

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    bptach.jpg I'm off to the GP today (he has asked me to go back). I have done two days of hourly BP and pulse as a baseline for whether I have PoTS. I did the poor man's pots test and pulse went up by 37 and I have the leg rash.
    I will repeat the pots test today before I see the doc.

    If anyone can see anything on this chart I need to point out please let me know. Anyone with PoTs or other dysautonomic disorders see anything here?
    Thanks in advance
  2. taniaaust1

    taniaaust1 Senior Member

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    If you are doing the POTS test correctly eg comparing laying to just standing.. and its going up 37 which is clearly POTS, I suggest to focus on that with your doctor... the leg flushing is another indication of it and of blood pooling in your legs.

    You dont need to keep testing yourself for POTS if its showed up and you know you can trust your monitor. (sometimes POTS can be intermittant and not show up on every tilt table test .. and of cause poor mans test is even less sensitive then a TTT.

    I suggest to take some info on POTS into the appointment with you and focus on that part of your dysautonomia. Note.. if you are going to ask for a referal anywhere.. make sure its to somewhere which does tilt table testing.
  3. Shell

    Shell Senior Member

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    Thanks Tania. I don't think I'll get a TTT as apparently NICE guidelines say not to use it!
    My GP is a good man but this is the UK and the NHS and I just don't know what'll happen.

    Did repeat PMPots Test and got some weird results. My pulse/SATS metre couldn't cope with the erratic pulse so I ended up doing pulse by hand. So my pulse evens out at around 110 t0 120 but misses beats. I am such a weido!
  4. Sea

    Sea Senior Member

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    You have quite high Diastolic blood pressure (the lower number).

    You've also picked up a significant narrowing of pulse pressure at times (the difference between the Systolic and Diastolic) Normal seems to be around 40 although the range of what is considered normal does vary a bit. One possibility is lowered blood volume which is common in us and contibutes to POTS
    Valentijn likes this.
  5. Sea

    Sea Senior Member

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    I notice your lowest blood pressure readings were at 12:30 and 6:30. Were these after eating? This is known as postprandial blood pressure drop and is another indicator of autonomic dysfunction
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    By SATS, do you mean oxygen saturation? If so, it is a bit low.

    And, as others have said, your BP is varying a great deal and sometime you have a narrow pulse pressure and also high diastolic. Definitely something going on!

    Sushi
  7. taniaaust1

    taniaaust1 Senior Member

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    missing beats= arrhythmia can just be another symptom of dysautonomia. There is a good symptom list on POTS at http://www.dinet.org/symptoms.htm

    As someone else said.. you do have narrowing of the pulse pressure (a difference of17 or under.. Dr David Bell (me/cfs specialist) who studied under Dr Streeten (world specialist in autonomic disorders..he write the medical textbook on this).. is said to be abnormal.. your graph shows one at only 10 difference between your pulse rates. Too much narrowing of the pulse pressure can cause a pass out. This is another abnormality ME/CFS can cause (but something which you are very unlikely to find a doctor to worry about at all as they are even less knowledgable in that area then even with POTS).

    So you have multiple autonomic abnormalites..
  8. Shell

    Shell Senior Member

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    Sea - than you for that info, very interesting. Yes the 12/30 and 6/30 times were post eating. I did wonder about the narrowing between sys and dia, so thansk for heads up (no pun intended) on that.

    My GP has concurred with my self made PoTS dx and is referring me to a cardio who specialises in PoTS.
    He told my my EEG was normal but the epilepsy neuro is "interested" in my case.
    I have learned over the last ten years not to get hopeful - but the fact that the pulse and BP seem to clearly weird should help my cause.

    I too wondered about the oxygen SATS dropping like that. I have noticed it a few times but it's not a regular thing. I hover mostly around 96 but can drop out to 89 - 91 especially with things like going upstairs.
    I am supposed to be seeing a lung specialist but I was too ill to go in August and I haven't heard anything from my canelled appt. The usual NHS crap.

    I decided to take my life in my hands yesterday and tell my GP exactly what is happening and how I feel about it.
    He asked if I was afraid of dying of this and I said no because death would get me out of it; what really scares me is becoming bed bound and not being able to take care of my children.
    I thought he would laugh it off, but he didn't.
    I think I have found one of the few really good'uns out there. God bless him!

    Sushi and taniaaust1 Thank you for the support here as well. I really felt worried yesterday and having the support here makes so much difference.
    Sea, Valentijn and taniaaust1 like this.
  9. taniaaust1

    taniaaust1 Senior Member

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    That's great to hear.. if he/she tests you.. you should have that part of the battle to get it recognised won. (dont drink any excessive amounts of water before your appointment as it can stop POTS from showing up if he does a poor mans test while you are there).

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