• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome

xchocoholic

Senior Member
Messages
2,947
Location
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:

Tired of being sick

Senior Member
Messages
565
Location
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:

Tired of being sick

Senior Member
Messages
565
Location
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
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
Adrenal Fatigue and Blood Pressure - DrLam® - Body. Mind ...

About the Author:
dr_lam.jpg

Michael Lam, M.D., M.P.H., A.B.A.A.M., is a western trained physician specializing in nutritional and anti-aging medicine. Dr. Lam received his Bachelor of Science degree from Oregon State University, and his Doctor of Medicine degree from the Loma Linda University School of Medicine in California. He also holds a Master’s degree in Public Health. He is board certified by the American Board of Anti-Aging Medicine where he has also served as a board examiner. Dr. Lam is a pioneer in using nontoxic, natural compounds to promote the healing of many age-related degenerative conditions. He utilizes optimum blends of nutritional supplementation that manipulate food, vitamins, natural hormones, herbs, enzymes, and minerals into specific protocols to rejuvenate cellular function.

Dr. Lam was first to coin the term, ovarian-adrenal-thyroid (OAT) hormone axis, and to describe its imbalances. He was first to scientifically tie in Adrenal Fatigue Syndrome (AFS) as part of the overall neuroendocrine stress response continuum of the body. He systematized the clinical significance and coined the various phases of Adrenal Exhaustion. He has written five books: Adrenal Fatigue Syndrome - Reclaim Your Energy and Vitality with Clinically Proven Natural Programs, The Five Proven Secrets to Longevity, Beating Cancer with Natural Medicine, How to Stay Young and Live Longer, and Estrogen Dominance. In 2001, Dr. Lam established www.DrLam.com as a free, educational website on evidence-based alternative medicine for the public and for health professionals. It featured the world’s most comprehensive library on AFS. Provided free as a public service, he has answered countless questions through the website on alternative health and AFS. His personal, telephone-based nutritional coaching services have enabled many around the world to regain control of their health using natural therapies.


Adrenal Fatigue and Blood Pressure
By: Michael Lam, MD, MPH
www.DrLam.com
Introduction

Blood pressure is an important indicator of adrenal health and function. Mild adrenal weakness is usually accompanied by normal to high blood pressure. As Adrenal Fatigue advances, low blood pressure, at rest or related to posture becomes more prevalent. This paper will attempt to examine how a weak adrenal can drastically alter the blood pressure landscape in the body. In particular, we will examine the physiology behind low blood pressure within a setting of advanced Adrenal Fatigue and the wide variety of symptoms such as dizziness, lightheadedness, orthostatic hypotension and heart palpitations that accompany this state.


Adrenal Fatigue and Blood Pressure

Adrenal Fatigue should not be confused with another medical condition called Addison's disease, where the adrenal glands are not functioning. While Addison's disease is often caused by autoimmune dysfunction, Adrenal Fatigue is largely caused by stress. Adrenal Fatigue is the non-Addison's form of adrenal dysfunction in a sub-clinical form. If you have symptoms such as tiredness, fearfulness, allergies, frequent influenza, arthritis, anxiety, depression, reduced memory and difficulties in concentrating, insomnia, feelings of being worn-out, and the inability to lose weight after extensive efforts, you may be suffering from Adrenal Fatigue (technically known as hypoadrenia).

Typical blood pressure of a person in Adrenal Fatigue ranges from normal to high in early stages and then progresses to low in later stages.


A relatively easy tactic of increasing blood pressure is simply to take in more salt and water. Salting food liberally as well as taking salt-water drinks can be very helpful. Sea salt is better than table salt because it contains trace minerals. Drinking more water will increase blood volume. This helps those who have chronic hypotension, chronic orthostatic intolerance, neurocardiogenic syncope, and POTS.
 
Last edited by a moderator:
Messages
13
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.
 

Tired of being sick

Senior Member
Messages
565
Location
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!
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
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,
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)
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:

Scarecrow

Revolting Peasant
Messages
1,904
Location
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.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
@Scarecrow
The Shock Index is used for a range of assessments
e.g.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3628475/
Screening for severe sepsis in adult emergency department (ED) patients may involve potential delays while waiting for laboratory testing, leading to postponed identification or over-utilization of resources. The systemic inflammatory response syndrome (SIRS) criteria are inaccurate at predicting clinical outcomes in sepsis. Shock index (SI), defined as heart rate / systolic blood pressure, has previously been shown to identify high risk septic patients. Our objective was to compare the ability of SI, individual vital signs, and the systemic inflammatory response syndrome (SIRS) criteria to predict the primary outcome of hyperlactatemia (serum lactate ≥ 4.0 mmol/L) as a surrogate for disease severity, and the secondary outcome of 28-day mortality./QUOTE]

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.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
It seems to be a good indication that the body is not doing well.
I agree.
I don't know how often healthy people have a Shock Index of over 1.
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.
 

Tired of being sick

Senior Member
Messages
565
Location
Western PA USA
What happens to your blood pressure if you stand for more than 10 minutes? Have you ever tried 30 minutes?
getting your blood pressure to drop to far will result in fainting or worse/best avoided.
@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

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:

Tired of being sick

Senior Member
Messages
565
Location
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.