taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
such approach should lead to a more "rational" integrated management. .. I think not. Since when is not treating peoples problems rational.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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POTS data
- Thread starter golden
- Start date
such approach should lead to a more "rational" integrated management. .. I think not. Since when is not treating peoples problems rational.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
Thanks Valjentin,
Standing up your pulse pressure is 21, 55(?), 24, 16, 18, and 15.
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.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
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.
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
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
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 !
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 !
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.
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:
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.
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:
@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.
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.