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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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  1. taniaaust1

    taniaaust1 Senior Member

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    such approach should lead to a more "rational" integrated management. .. I think not. Since when is not treating peoples problems rational.
    leela and golden like this.
  2. taniaaust1

    taniaaust1 Senior Member

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    IIve a couple of times strange variations of huge gaps at times too while at other times I have very bad narrowing of my pulse pressure eg 6 or 7, my whole BP thou can be highly unstable so its not surprising to me that my pulse presssure can gave some weird variations happen at times too while my BP and heart is trying to stabilise after Ive stood up.
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  3. taniaaust1

    taniaaust1 Senior Member

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    I tried quite a lot of different monitors and they used to error out on me.. I later realised its cause at times my heart goes into arrthymia cause I've stood up (very short bouts of it with some beats will screw monitors up and have them error out).

    Thou my previous one which did that (along with also my nannas monitor) werent cheaps ones, IveI now got a far better monitor (A Premium Omron brand monitor) which still can give me valid BP reading at times even when my heart beat is affecting things (which then on other monitors would of given me no BP reading if they had been unable to give me a heart beat reading). I'd been so so frustrated with the other monitors not working a lot of the time with those errors cause they couldnt handle my body.

    The itching and the pricking sensations in hands and legs/feet, would I think be blood pooling sensations.
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  4. golden

    golden Senior Member

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    I think I will not go to my g.p. with my bp results.

    I was going to , but as I have read more of peoples awful experiences I think its more likely to be a disadvantage to me.

    Plus, I can only fight when lying down :) so by the time I am at a G.P.appointment It would just be another frustrating frustrating experience.

    Thinking about it - what does the daft NHS think is normal?

    One blood pressure test only on one arm in the seated position.

    So if I go to my G.P. haven taken 3x xbp readings lying down

    followed by numerous bp readings stood up.....

    Can already feel the glares from them now. Cant bear it. Its not anticipatingbad things - its a real reflection of how things really are .

    its having firmly learned that if you put your hand in the fire - it gets burned...

    I found this letter highlighting POTS discrimination:

    http://stoppotsvirginia.blogspot.co.uk/p/letter-to-doctors-regarding-anxiety.html?m=1
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  5. golden

    golden Senior Member

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    Just had to do another of these things to send up to date data to practitioner. Hopefully he will view it as useful? have some insight.
    I have been feeling worse again. Its been handy having the data here.


    Lying Down:

    1) 99/58 pulse 69
    2)97/64 p77
    3)93/60 p77

    Standing Up

    1) 20:12 - 128/81 p 117
    2)error
    3)error
    4)error
    5)error
    6)20:17 137/112 p66
    7)error
    8)20:19 97/67 p101
    9)20:20 99/71 p100
    10)20:21 130/111 p 89
    11) error
    12)error
    13)forced to lie down, neurological twitching, pain in left foot , pins and needles and burning in legs

    Lying Down:
    1) 44/33 p70
    2) error
    3)error
    4) 103/63 p86
    5)93/61 p71
    6)92/65 p71

    Final job now to paste these in my email to practitioner and all done ! :)
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  6. golden

    golden Senior Member

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    I still never got any feedback from the practitioner I sent the results too.

    Yesterday I went to a Pharmacist. I handed over the scientific studies and clearly explained what I needed and why.
    I was pleased in fact as this was good speaking practice for me.

    She read the material and picked out the word 'Anxiety' 'Its an Anxiety condition she informed me.

    No, I said. The controlled studies state that those with POTS have lower levels of anxiety than the general healthy population. I explained to her its a postural condition due to a variety of factors such as low blood volume.

    So after explaining this. She insisted on my right arm for some peculiar reason. Took my blood pressure whilst sitting and declared 127/78 - normal.

    Thats rights I said. Thats what I have been telling you.

    She then passed comment on my pulse being 101. Thats high she said. Do you have palpitations.

    I can feel my heart thumping yes but the burning and prickly sensation in the back of my legs abnd feet is where I took her attention too.

    She then seemed to understand the low blood volume aspect - although I pointed out I was unsure.

    She told me to go to a walk in centre and insist on tests. I said I am not very good at insisting, (ha ha I cant even get you to do it I thought) - But she reassured me I should definately be insisting as my pulse was high. (It was hot yesterday)

    So, that was my trip to the pharmacist. :) I think she may have learned a few more things. I wish I had left her with the material really.

    It would be a good port of call if these chains could test BP properly like this as they have the time and resources.
    Last edited: Jun 24, 2014
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  7. golden

    golden Senior Member

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    So I decided I would video my BP monitor results and this turned out to be easy.

    I think I have some good improvement as it happens from the last time I did this August 2013 - so maybe good that the pharmacist didnt bother testing me afterall!! :)

    The article I read states that for a POTS diagnoses one must have a SUSTAINED rise in pulse of 30 beats...
    Have I got this right...


    Lying Down 1) 84/52 p71
    2) 79/52 p76


    I did have to walk a few steps on standing from lying down.

    Standing: 11:10am 1) 93 /64 p86
    2)133/108 p60
    3) 90/65 p87


    11:15am 4) 89/60 p88
    11:18am 5) 101/66 p89
    11:21am 6) 91/72 p95
    7) 102/70 p106
    8) 101/76 p92


    11:27am 9) 91/74 p103
    11:30 am 10) 111/68 p94
    11:33 am 11) 95/75 p100
    11:36 am 12) 99/78 p100
    11:40 am 13) 92/76 p109

    Overall, I was fairly comfortable, arm didnt hurt at all but had to stop after the half hour. This was a major improvement though from last time I did this. There were no BP errors come up so I think thats a good sign too.

    Is this overall picture looking better? And is it safe to safe that this no longer qualifies as a POTS diagnoses?

    Any advice appreciated.

    P.S. done my best to edit it into readable format but the text keeps on going all over the place.
    Last edited: Jun 24, 2014
  8. Valentijn

    Valentijn Activity Level: 3

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    @golden - Your pulse pressure is pretty awful. At 11:40 it's down to 16 - no wonder you needed to stop!

    It doesn't look like POTS, but it looks a helluva lot like Neurally Mediated Hypotension. POTS sometimes will kick in to compensate for the low pulse pressure, but not for everyone, and not consistently.

    BTW, pulse pressure is the difference between the systolic (top) and diastolic (bottom) reading. 40-50 is pretty normal, and under 30 starts to feel bad.
    ahimsa likes this.
  9. golden

    golden Senior Member

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    Thanks very much @Valentijn - I didnt want to @buzz you directly but am thankful you replied :)

    I will just hope for continued improvement I think.

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