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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
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  1. golden

    golden Senior Member

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    hi

    i have recently been advised to look at a pots diagnoses and so came to this forum.

    i did bp readings. i was hoping someone maybe knowledgeable enogh to shed some light on them for me - as i am confused.

    lying down still - 102/58 pulse 75
    108/59 p 88

    standing up still:

    1min - 96/65 p134
    2min - 122/59 p98
    3min - 85/64 p118
    5min- 103/57 p 103
    6min- 83/57 p111
    7min - 98/68 p 108
    8min- 85/69 p124
    9min - 88/61 p132
    12min- 91/68 p123

    if that means anything to anybody i would really appreciate the help.

    thankyou! :)
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    golden

    Have you also discovered: http://potsplace.com/ ? There is a lot of information there and on their forum.

    Generally a rise of 30 beats is considered POTS, but yours seems to go up and down as you stand (as does your BP) so I tilt table test would tell you a lot more.

    Best wishes,
    Sushi
    golden likes this.
  3. Sparrow

    Sparrow Senior Member

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    I'm not a doctor, so take my amateur opinion for what it's worth (probably not much ;)), but that looks a bit dysfunctional to me. Do you have any other symptoms in addition (light-headedness, getting dumber when standing to long, itchy or red feet/legs, etc.)?

    First off, your pulse jumped up pretty significantly going from lying to standing, which is a classic POTS trait. More than 30bpm difference, or over 120 is the official marker, from what I can remember (could be off a bit on that). Does your heart rate jump that high every time you're standing? It seems to have settled into a pretty consistently high rate after the ten minutes or so.

    Secondly, it looks like your blood pressure was oscillating quite a bit while you tried to stand there. Mine climbs up temporarily sometimes when I'm standing, and it always seems to me like it's trying hard to compensate and keep the blood supply sufficient, but then gives out. There was also a big difference in your bp readings. As I understand it, bp is supposed to be pretty consistent over a short duration like that. Mine seemed super variable, particularly when I was super ill. I didn't realize until much later that it might not be supposed to do that. :)

    If you have a doctor you trust at all, I would suggest showing this to them, and letting them know that you were wondering if you might have some POTS issues. There definitely seems to be enough there to wonder.
    golden likes this.
  4. golden

    golden Senior Member

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    hi

    th

    hi :)

    thankyou - if i would need a g.p. for a tilt test then i wont get one. g.p. surgery useless.

    can it be done privately?

    what does it mean if its going up and down? is it normal?

    thanks :)
  5. golden

    golden Senior Member

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    hi :)

    thanks for your reply :)

    i dont have a decent doctor.

    what is the cure?

    i am not sure what my bp is normally doing - i will try doing this again but tbh its taken its toll.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Golden,

    No it doesn't look normal, it looks "dysfunctional."

    G.P.s would not normally prescribe a TTT. What country are you in?--that makes a difference.

    Generally some sort of autonomic specialist or "enlightened" cardiologist would prescribe them. But, many cardiologists who do prescribe them don't know how to set them up to test autonomic function or what to do with the results.

    I had one with an autonomic specialist.

    Sushi
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  7. golden

    golden Senior Member

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    thanks sushi :)

    i am in england uk. only ever had useless doctors.

    what is a TTT?
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    golden

    TTT = Tilt Table Test

    There are a few here from the UK who have succeeded in getting them. Look in the POTS, OI section and look for people from the UK. I believe it is possible there though difficult to arrange. Or, you could start a new thread (something like "TTT in the UK?") or ask to have the title of this thread changed.

    Sushi
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  9. taniaaust1

    taniaaust1 Senior Member

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    You clearly have POTS there..showing by your degree of pulse raise when just standing.

    BP does vary a bit but I dont know if yours is of a variance to say that is an issue... I'd think to focus on that POTS as that is clearly dysfunctional so you do have dysautonomia and should seek to get an offical diagnoses of this. This can be done by a tilt table test OR by a "poor mans standing test" in a doctors office with the doctor taking the readings. (poor mans standing test is what you yourself have just done .... readings done while calmly laying and then on standing).

    If there is no where you can get to who specialist in POTS... try taking the POTS info in to your doctor with your readings u did and if he dont believe you, see if he will spend the time to test it for himself (just make sure he gets a stable laying reading first for you). There is POTS info online put out by well known hospitals with you could print and take in with you. If your doctor tests you..make sure you havent had excessive amounts to drink ..as some of us do that to hold off POTS symptoms and that can interfere with POTS testing.

    Treatment for POTS consists of 1st line treatments are drinking more water or electrolite solutions, increasing salt and getting some medical compression stockings of a pressure suitable for most with POTS (if you have health insurance they may pay for these if prescribed by doctor due to POTS). After doing those things if you still have issues (which most do thou those things can help quite a bit)... one thing needs to trial some prescription meds for POTS. eg Florinef is the most common one used for this but there are others too if that proves not to be suitable.

    If your doctor is "not familar" with POTS but is willing to listen and start to treat you and does prescribe meds.. I strongly suggest to check with those at this site in regards to what he's told you about dosing (some doctors try to start people off too high on the POTS meds instead of doing a slow dosage work up and that can cause issues esp with Florinef which should be started in small amount). Take care.
    golden likes this.
  10. Valentijn

    Valentijn Activity Level: 3

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    In addition to your other results showing likely POTS, your pulse pressure (difference between systolic and diastolic values) gets pretty narrow at some points. In the samples quoted, your pulse pressure is 21 and then 16, and quite a few of your other samples are under 30. Normal pulse pressure is 40, a pulse pressure of 25 is "very low", and even 30 can feel pretty nasty. So you might have some Neurally Mediated Hypotension to go with (or causing) your POTS.
    golden likes this.
  11. golden

    golden Senior Member

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    thanks :)

    one thing is for sure -

    i am not going back down the rabbit hole to visit those crazy nhs doctors again! lol

    this condition again sounds like m.e. in that its met with ignorance, stupidity, misdiagnoses of psychological issues and treatment including c.b.t.!

    will try the salt, fluids, stockings, and more detoxing :)
    Valentijn likes this.
  12. Shell

    Shell Senior Member

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    golden I don't blame you wanting to avoid doctors. Sometimes I think my 5 year old has more sense and knowledge than the average medic.
    Anyway on the question of POTS. It's a variable disease. So you may need to get yourself doing more than one poor man's tilt table test. Look at an overall pattern.
    As NICE (NASTY) have said TIlt Table Tests shouldn't be done unless there's a terrible reason or somthing you will find it mighty difficult to find a cardio who will send you for one. They cost money you see - and the people doing them need to know what they are actually doing , and well... :whistle:

    Good luck with the salt fluids and stockings. :)
    golden likes this.
  13. Sea

    Sea Senior Member

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    Dysfunctional as others have noted. Also, the changing figures show an automonic system that is in a continual struggle to balance itself. Lots of compensation happening as your body tries unsuccessfully to stabilise in a standing position.

    While the majority of doctors do not understand this condition, there are some who do. Though I fully understand the need to take some time out from stressful interactions with drs it is worth pursuing a tilt table test at some point.

    I hope the salt and fluid make a difference for you, they can be quite helpful.
  14. golden

    golden Senior Member

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    just updating -

    salt is delicious :) yum yum

    i have had a few warm pleasant body flushes after increasing salt. but my body goes back to beinv cold afterwards.

    in addition to lyinv down - elevating my legs to a 45 degree angle is bliss. i cant believe i have only just discovered this.

    in those periods were i have been able to physically do more - although i didnt test it because i have only just learned how to - i do believe that exercise is making pots worse for me. i believe a thought is that this condition is brought on by sedentary lifesstyle. i dont think this is the case.
    Valentijn likes this.
  15. lnester7

    lnester7 Seven

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    The specialist is called electrophysiologyst.
    golden likes this.
  16. golden

    golden Senior Member

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    Thought I would do this test again to see , have not wanted to cos its like torture.

    Lying Down
    1) 90/64 pulse p74
    2)97/62 pulse p74
    3)92/60 p76

    standing :

    12:00 1)91/72 p140

    2) 109/54 p113

    12:03 Error
    Error

    12:06 error
    Error (cant breathe trying deeper breathing adjusting spine)

    12:07 88/64 p105
    12:10 pins needles (prickles) tops of feet

    Error
    Error
    Error


    12:12 91/75 p103

    12:13 Error
    Error

    12:15 82/64 p113

    Itching legs Badly itching - air hinger trying to get breath


    Error
    Error
    Stupid machine reallu hurting my arm - error

    12:20 84/69 p126

    HAVE to lie down Immediately

    Very itchy legs n arms

    12:28 taking some nice breaths itchiness subsidize.

    it doesnt seem much difference to me.
  17. Valentijn

    Valentijn Activity Level: 3

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    Laying down your pulse pressure (difference between the systolic and diastolic reading) is 34, 35, and 32.

    Standing up your pulse pressure is 21, 55(?), 24, 16, 18, and 15.

    Your pulse pressure seems to drop quite badly when you stand up. Again, 30-50 is normal, and you're getting to under 25 immediately after standing. Your systolic reading is dropping a bit when you stand, and your diastolic reading is rising a bit, bringing them too close together.

    The net result is that when your pulse pressure gets low, you are moving blood around very inefficiently, and might not be getting much at all to your brain. And since blood delivers oxygen and nutrients to the brain, this slow/weak movement of blood can mean that your brain cells get deprived when you're upright for long.

    The "error" readings are probably due to your pulse being too weak for the BP monitor to detect it often enough.
    ahimsa, golden and Shell like this.
  18. golden

    golden Senior Member

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    Thanks Valjentin,

    Standing up your pulse pressure is 21, 55(?), 24, 16, 18, and 15.

    I Have typed in the (55?) reading correctly. So dont know what its doing . Its like a jumping frog lol :)

    The deep breathing exercises my doctor suggested ages ago - i was told to vigorously do...

    i did

    i had terrible problems and i collapsed twice ...

    pressure and dizziness in my head like it would explode and like i never experienced before
    i got lumps appear around my right ear and some relief of head pressure . months later lumps went.

    also my left face went numb ish andfront left brain numb too .

    was wondering why the aggressive breathing caused this and if its connected to these bp readings


    I can clearly understand the numbers pattern - thankyou - i would have never spotted it...

    but i dont really know what it means and why in practical terms

    What is causing it?

    the neurally mediated hypertension - but i am emotionally stable....?

    I will try the pots forum Sushi said - i forgot at the time

    :)
  19. golden

    golden Senior Member

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  20. golden

    golden Senior Member

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    Is this advice because its from a UK site :

    *
    *
    *
    * logical to consider assessment of psychiatric status in patients with overt psychosomatic complaints
    * such approach should lead to a more rational integrated management of these complex patients although the clinical dilemma is confounded by the frequent rejection of any psychiatric aetiology by many patients"

    Because that sounds a bit iffy to be ....coupled with CBT as a treatment

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