Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Tired of being sick, May 20, 2014.

  1. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,947
    Likes:
    1,676
    Florida
    Thanks. Being dehydrated from puking isn't any fun. Thankfully I'm not dehydrated right now.

    I'm trying to understand how hypoperfusion varies. I vaguely remember, I think ?, someone saying veins become dilated? when we have an allergic reaction. When I first started a mast cell treatment (wal-zyr) my OI lessened. I had to stop because it because it started making me waaaaay too drowsy.

    I'm trying to find a treatment for my OI and hypoperfusion. I don't know why I'm affected by standing so quickly or why it takes my body an hour to recover. My bp stabilizes quickly upon laying down but my heart needs about 45 minutes to reach resting hr.

    I tried using ice on my lower back and heat on my upper body to shorten my recovery time but it didn't work. Logic being that ice causes blood to move away from tissues and heat draws blood to an area. It was relaxing tho.

    It sucks being sick and trying to learn all this medical info.

    Tc .. x
     
    Last edited: Jun 1, 2014
  2. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    Thanks.

    Sush.Val and Hip
     
  3. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    New description about Postural Tachycardia Syndrome ...
    New description about Postural Tachycardia Syndrome (PoTS) at Dept for Work and Pensions website
    The Department for Work and Pensions has posted a helpful description of Postural Tachycardia Syndrome (PoTS) on their website. POTs – also known as Postural Orthostatic Tachycardia Syndrome – is a condition that can be experienced by people with moderate to severe ME/CFS.

    The posting, in the Department’s list of medical conditions, describes the impact on people’s lives and indicates some coping strategies that could be adopted at work and at home. It has been reviewed by Julia Newton, professor of ageing and medicine at Newcastle University, and by Birmingham GP Dr Lesley Kavi.

    Diagnosis
    Diagnosis is usually made by Tilt T
    able Test or Stand Test. There should
    be a sustained increase in heart rate
    of 30 beats per minutes within the
    first 10 minutes of upright tilt or
    active standing. Blood pressure usually
    remains stable or increases slightly, although some patients will also
    experience a drop in blood pressure


    Differential Diagnosis

    As there is limited awar
    eness of PoTS within the medical communities, it
    can be mistaken for other conditions including vaso-vagal syncope,
    chronic fatigue syndrome, anxiety, pani
    c attacks or depression. Symptoms
    are similar to those found in pheochr
    omocytoma (noradr
    enaline secreting
    tumour) and hyperthyroidism and it
    may be necessary to exclude these
    conditions.
     
    Last edited: Jun 26, 2014
    WillowJ and merylg like this.
  4. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    My blood pressure/ pulse record

    (Note: all recordings that are not described in parenthesis are sitting)


    Thursday June 12th

    5;00pm: 141/79/91
    6:00pm: 143/83/122 (While in the middle of eating dinner)
    7:30pm 138/83/105
    8:00pm 146/94/114 (upon standing)
    8:05pm 134/79/91 (within one minute of lying down)
    9:45pm 123/76/82 (lying down)
    11:30pm 118/65/82 (lying down)
    Friday June 13th
    8:45am 110/65/77 (Lying down upon awakening)
    11:30am 137/82/89 (in the middle of eating breakfast)
    12:30pm 136/77/84
    2:30pm 147/90/145! (Directly after taking shower standing)
    3:15pm 142/87/106
    4:00pm 138/97/95
    6:00pm 145/96/85
    6:01pm 122/92/106 (upon standing)
    7:30pm 137/79/74 (lying down)
    8:30pm 133/72/87(lying down)
    9:30pm 134/75/85 (lying down)
    11:00pm 131/70/88 (lying down)
    Saturday June 14th
    9:30am 118/73/74 (lying down upon awakening)
    11:30am 124/72/84 (lying down)
    12:30pm 127/85/89
    5:30pm 148/95/88
    5:31pm 134/100/106 (upon standing)
    5:45pm 133/96/86
    6:10pm 147/100/123 (in the middle of cooking dinner standing)
    6:20pm 142/96/112 (within one minute of sitting down to eat)
    6:25pm 143/97/111
    6:26pm 129/94/122 (upon standing)
    6:40pm 133/97/103
    7:00pm 146/96/107
    7:01pm 145/98/116 (while reading out loud)
    7:02pm 130/90/123 (upon standing)
    Sunday June 15th
    6:15am 124/72/76 (lying down upon awakening)
    1:15pm 142/90/84
    2:15pm 141/89/80
    2:16pm 129/87/93 (upon standing)
    3:00pm 152/99/99
    5:30pm 135/90/99
    9:00pm 126/79/73 (lying down)
    Monday June 16th
    9:30am 123/73/79 (lying down upon awakening)
    1:00pm 127/83/113
    1:01pm 121/86/126 (upon standing)
    2:10pm 116/84/166! (Directly after taking shower standing)
    3:10pm 116/80/137 (standing)
    3:30pm 123/82/114
    4:00pm 129/82/109
    4:30pm 135/82/102
    5:00pm 132/86/104
    7:30pm 131/97/112
    8:30pm 132/84/112
    8:40pm 119/75/109 (within 10 minutes of lying down)
    Tuesday June 17th
    8:00am 116/72/73 (lying down upon awakening)
    9:30am 125/88/81
    12:30pm 136/81/100
    2:30pm 134/87/120
    3:30pm 148/92/100
    4;30pm 142/94/101
    5:30pm 143/91/98
    7:00pm 137/91/115
    8:00pm 141/86/109
    9:00pm 121/76/87 (lying down)
    10:00pm 126/71/85 (lying down)
    Wednesday June 18th
    8:45am 117/71/75 (lying down upon awakening)
    10:00am 131/89/150! (Directly after taking shower standing)
    11:00am 142/86/107

    My blood pressure/pulse is normal only when lying down
     
  5. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    Adrenal Fatigue and Blood Pressure - DrLam® - Body. Mind ...

    About the Author:
    [​IMG]

    Adrenal Fatigue and Blood Pressure
    By: Michael Lam, MD, MPH
    www.DrLam.com
     
    Last edited by a moderator: Jul 5, 2014
  6. kevinj

    kevinj

    Messages:
    13
    Likes:
    5
    It is a lot to take in. Complicated. But I do get very cold feet and hands that go blue sometimes. But not much blotchiness I don't think. I will look out for that. And will start measuring my pulse. Then go to the doctor and get tested. Very interesting though finally To hear some possible reasons.
     
  7. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    @Kev
    Finding a Dr who has the the knowledge/authority to diagnose POTS is as rare as the disease itself..
     
  8. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    Poorman's tilt table test> Standing for 10 minutes
    without medication
    Sitting at rest:
    6:32PM 152/91/92
    Upon standing:

    6:33PM 128/81/115
    6:33PM 131/84/114
    6:34PM 126/87/116
    6:35PM 137/88/114
    6:36PM 137/86/116
    6:37PM 125/84/118
    6:38PM 134/81/118
    6:38PM 116/79/119
    6:39PM 125/84/122
    6:40PM 144/84/118
    6:41PM 122/81/123
    6:42PM 142/82/122
    6:42PM 118/79/122

    BPM increased by 30 and over 120 @ 122 meeting both criteria for POTS
    POTS is a heart rate increase of
    30 beats per minute (bpm) or more,
    or over 120 bpm,
    within the first 10 minutes of standing.

    With the medication Lisinpril


    Sitting at rest:

    5:24PM 122/71/83

    Upon standing:

    5:24PM 104/74/110
    5:25PM 110/76/116
    5:25PM 115/79/122
    5:26PM 119/80/126
    5:27PM 133/79/125
    5:28PM 113/83/126
    5:32PM 113/82/125
    5:32PM 126/79/126
    5:33PM 113/79/128
    5:34PM129/77/131
    5:35PM 116/75/131

    As you can see my BPM increased a whopping 48 bpm! and way over 120 @ 131!
     
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    11,286
    Likes:
    26,522
    Amersfoort, Netherlands
    @Tired of being sick - Are you able to go for longer? Your pulse pressure gets down to 29-30 a couple times, and might go lower if you stand for longer.
     
  10. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    I don't quite grasp your question,Val..
     
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    11,286
    Likes:
    26,522
    Amersfoort, Netherlands
    What happens to your blood pressure if you stand for more than 10 minutes? Have you ever tried 30 minutes?
     
  12. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    I can barely go ten minutes let alone 30...

    I can't stand standing still..

    I always pace while waiting in lines..

    Maybe I can try,we'll see..
     
  13. alkt

    alkt Senior Member

    Messages:
    162
    Likes:
    238
    uk
    getting your blood pressure to drop to far will result in fainting or worse/best avoided.
     
  14. Hutan

    Hutan Senior Member

    Messages:
    508
    Likes:
    1,922
    As well as:
    POTS criteria: increase of over 30 beats per minute within 10 minutes of standing; and
    pulse pressure: difference between diastolic and systolic blood pressure; 40 is normal, less than 25 is a problem

    I've just found
    shock index: heart beats per minute/systolic blood pressure
    'The shock index (SI) is a bedside assessment defined as heart rate divided by systolic blood pressure, with a normal range of 0.5 to 0.7 in healthy adults.

    Allgöwer and Buri13 first introduced the concept in 1967 as a simple and effective means of gauging the degree of hypovolemia in hemorrhagic and infectious shock states. Experimental and clinical studies have shown that SI is linearly inversely related to physiologic parameters, such as cardiac index, stroke volume, left ventricular stroke work, and mean arterial pressure.14 A SI ≥ 1.0 has been associated with significantly poorer outcomes in patients with acute circulatory failure.'​

    My shock index quite often goes over 1, even just upon standing, and at those times I often feel quite unwell, confused (more so than my usual state :) ) and I can't get warm.

    @Tired of being sick, you'll see that your shock index goes over one when you have a shower. For example,
    so you had a shock index of 1.4 (166/116) which is, well, it's pretty impressive.

    My doctor stopped using words like 'hypervigilance' when I started talking about my pulse pressure sometimes being 20. It made a difference to how she views my illness and she has me do a standing test every time I see her now. The Shock Index might be another number that means something to some doctors and helps you to convince them to take you seriously
     
    Last edited: Sep 1, 2015
  15. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    4,987
    Scotland
    @Hutan. Shock Index looks to be a measurement used when someone has suffered trauma. It's an indication of internal bleeding which may not be immediately obvious and predicts need for transfusion.
     
  16. Hutan

    Hutan Senior Member

    Messages:
    508
    Likes:
    1,922
    @Scarecrow
    The Shock Index is used for a range of assessments
    e.g.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3628475/
    It seems to be a good indication that the body is not doing well. I don't know how often healthy people have a Shock Index of over 1. Would be interesting to know.
     
  17. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    4,987
    Scotland
    I agree.
    I'd hazard a guess at 'never', not even during exercise.

    It's interesting that you should pick sepsis as another example of circulatory shock given Montoya's mRNA gene expression findings.

    I'd be wary of mentioning 'Shock Index' to a doctor unless you knew them well and could be sure of their response. It isn't something that would go down well with the average GP. It may be better to talk about the general principles of hr being close to or higher than systolic pressure when showering or making a cup of tea. If they dismiss you with the usual tripe 'oh that's perfectly normal', it's a pretty fair guess that if you had jumped in with 'Shock Index', their contempt for you would have been unbounded.
     
    ahimsa, Sidereal, Valentijn and 2 others like this.
  18. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    To bring you guys up to date on my diagnosis I had 2 tilt table tests done
    1 at UPMC and the other done at the Cleveland Clinic, both conclusions were that I have the Hyperadrenergic
    with late stage of neurally mediated hypotension form of POTS.

    Cleveland Clinic also performed a blood volume test showing my volume was a little low....

    I was put on Midodrine, compression stockings, and at least 60 oz's of sport dink per day
    My blood pressure is pretty stable now but the tachycardia and symptoms did not change much..
    Any time I'm doing something on my feet using arms, my Tachycardia stays above 140 BPM most
    of the time..
    My doc said anything above 140 BPM is a risk for heart failure..
     
    Last edited: Sep 1, 2015
    ahimsa, Hutan and Valentijn like this.
  19. Tired of being sick

    Tired of being sick Senior Member

    Messages:
    556
    Likes:
    394
    Western PA USA
    I blame all of my fatigue,weakness,pain,cognitive trouble,sleep problems and Osteoarthritis on the monophasic blood circulation to my limbs and brain upon any exertion associated with my 2ndary POTS....

    SEID/ME is the primary but POTS is the main disabler.
     
  20. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    6,093
    Likes:
    12,214
    USA
    @Hutan thanks for posting the info on the shock index and that is very interesting. I often have a very low pulse pressure between 23-26 and rarely go over 30.
     
    ahimsa and Hutan like this.

See more popular forum discussions.

Share This Page