Q. What is OI (Orthostatic
what is the CFS/FMS and Orthostatic
One of my favorite topics. And some practical help, too! - Elly
Non-technical, Practical CFS/FMS
Orthostatic Intolerance 101
(CFS) was linked to a cardiovascular and
neurological disorder called neurally mediated hypotension (NMH) in
1995, and later, also POTS, postural orthostatic tachycardia syndrome.
Fibromyalgia Syndrome (FMS) patients were also shown to have some POTS
NMH in research as well. NMH and POTS are dysautonomias, dysregulations
of the autonomic
nervous system. They can be thought of as forms of Orthostatic
Intolerance (OI), which literally means being intolerant of being
orthostatic intolerance is considered just one
symptom of CFS, FMS, POTS, NMH, and even mitral valve prolapse syndrome
/ dysautonomia (MVPS/D). Standing still, even standing still,
your circulation isn't up to compensating for gravity, can make a
person feel terrible! Moving around allows your muscles to help push
some blood around.
NMH, where there are sudden drops in blood pressure (BP), triggers
can be things that tend to lower BP such as heat, alcohol, and standing
up or staying still while upright.
POTS, where blood pressure and heart rate tend to
increase with prolonged standing and or high stress, triggers which
make things start or get worse tend to be things raise blood pressure
(BP) and heart rate like stress and stimulants (caffeine, citrates,
aspartates, Vitamin C).
in circulation occur with communication between the heart and the
both of which are structurally normal in typical OI patients. People
with CFS, FMS, or a long history of OI are generally very fatigued, in
a lot of pain, both and/or other. They can be kind of near
limits of what their bodies can handle, so any activity can bring on
old, recognizable symptoms, or sometimes new or a new degree of
factors that can be involved
triggering more circulatory symptoms are:
1) a low level of blood in the
heart due to low circulating blood volume (possibly from dehydration)
and/or blood pooling in the
arms and legs while in an upright position, and
2) increased adrenaline
which causes the heart to beat faster and harder.
The symptoms that
make a person feel terrible from either of these are a built-in
beautifully life saving compensating mechanisms to
help a person know
to lie down, move, or get away from the current situation, drink more
water, adjust electrolyte intake... and that
can be seen a good, survival communication from the body. The better
one gets at
recognizing the symptoms and triggers and adjusting for them, the more
comfortable one can become between episodes. The episodes can become
less frequent (!!!) the better one gets at avoiding the triggers
whether they be physical, emotional, intellectual, related to weather,
stress, environment, or personal biology. While figuring the
triggers out is not always
easy or possible, never mind consistently applying what you've
learned.... we've found having fewer symptoms and less severe symptoms
to be worth striving for and a relief to we can do something
See also from The Children
Venous Pooling in the Standing Position
How the Brain Controls the Heart
is usually identified easier in people who faint than in CFS and FMS.
By fainting, a person
becomes horizontal and blood is redistributed evenly and the body
starts to reset itself sooner rather than try to keep struggling
against gravity, heat, or other strains. If the struggle becomes too
much, a reflex signals the brain that blood pressure
needs to be lowered. The brain complies, causing blood vessels to
dilate and the body to start fainting. With CFS and FMS,
probably do it in slow motion. Generally, OI, CFS and FMS patients have
time as they start feeling worse and worse to notice and start
compensating activities, sometimes without realizeing it: walking or
pacing, sitting, lying down, putting feet up, talking more with hands,
or changing something to stop the actual faint. The more conscious the
effort to use these helpful behaviors, the more functional one can
become... at least up to a point.
Chronically fatigued people who rarely faint or
have never fainted, but get there half way and keep walking around not
really thinking well, might also be suffering from NMH. That was true
for me some of the time. Warning signs that a faint is
(lightheadedness, nausea, pain, changes in
vision, hearing, or other senses, etc.), would probably lead one to
move, sit down, cool off, or
other way abort or interrupt the faint. Even so, the after effects of
starting to faint remain. After effects of just beginning to faint,
withdraw, shut down can include fatigue for hours or
days, more cognitive problems, pain, shakiness, and depression or
irritability. If the NMH
reflex is set off repeatedly, chronic fatigue, chronic pain, and other
chronic problems may result.
can also be what happens after lots of POTS and PANS (problems within
the Autonomic Nervous System). The body provides many hints one must
lie down now after pushing too hard to keep going. That's what my tilt
table tests showed. Because I got to experience POTS as well as NMH on
tilt table tests, I learned what symptoms and feelings happen with
which types of readings. Many episodes of what I called "heat sickness"
and stress overreaction started making sense...with all the fatigue
For more technical discussion
Information Brochure on OI and Its Treatment, 2016 CF Clinic JHMI, Rowe
Dysautonomia Information Network
What are the
symptoms of Orthostatic Intolerance (OI) conditions?
cognitive dysfunction, and weakness are part of OI.
Lightheadedness, nausea, and dizziness are also very common. Extreme
stress sensitivity as well. Some other features are exercise
intolerance, alcohol intolerance, feeling too hot or cold, heat
intolerance, air hunger, and difficulty with quick movements,
especially those that send blood to the feet. Not all symptoms have to
be present for diagnosis. NMH and POTS and a similar cousin, Mitral
Valve Prolapse Syndrome / Dysautonomia (MVPS/D) seem to run in
families, and viruses or extreme stress or trauma often start a chronic
bout with symptoms. For our longer list, see symptom
section of the MVPS/D and OI page.
Can I have high
blood pressure & NMH, low blood pressure and POTS?
hypertension does not
exempt one from having neurally mediated
hypotension, nor does having hypotension exempt one from having
postural tachycardia and climbing BP upon standing.
The communication between the heart and brain
to fight or flee or give up and pass out are events and usually
triggered by something, what your regular BP and heart rate are isn't
the most important thing. It can be quite relative. If your regular BP
is very low and you have a sudden drop, you could feel worse than
someone who has high normal BP and has a drop.
What is OI's
relationship to CFS?
appeared and research has been done since the
first one I saw was published, "Is neurally mediated hypotension an
unrecognized cause of chronic fatigue?" appeared in the Lancet on March
11, 1995. In fact, there was one before that by David Streeten in 1992
that asked if delayed orthostatic hypotension might be involved in CFS,
but none of us found it. Dr. Streeten then collaborated with some CFS
researchers and did some fine studies. A good recent discussion of CFS
& OI is in an article by David S Bell, MD, The Symptom of
Orthostatic Intolerance in CFS that appeared in the Spring
Action Newsletter. In it, Dr. Bell states, “In this paper, I
like to suggest that the central and most disabling symptom of CFS is
not fatigue but the symptom of orthostatic
How is Orthostatic
OI can be
diagnosed with a
detailed history, but a tilt-table test can
confirm it. The short description of a tilt table test is imagine your
self standing still for 45 minutes. People without OI usually say,
"What's hard about that?" People with OI say, "Groan.... I couldn't
possibly do that!"
sudden drops in blood pressure
that stabilize quickly can be tricky so it is important to report
feelings and sensations during the test as well, without moving too
much or getting too excited. A measurement must take place while the
happening; after an episode is too late. Since BP cuffs are used and
measurements only taken every few minutes, it is still not a perfect
test. Because blood pressure
stabilizes quickly, it is nearly impossible to measure in a routine
setting like a doctor's office. Also, simple standing, sitting, and
lying-down blood pressure readings are not adequate for the diagnosis
of NMH or POTS.
people are often very stressed in testing environments so
their resting blood pressure and heart rates may be elevated. This may
make difficult to show the increases that typically happen and would
allow for a POTS diagnosis.
usually done in a hospital setting and may take
a few hours. Specialized cardiologists called
electro-physiologists, are physicians that most often do tilt-table
tests. Every center seems to do tilt tests in their own manner, varying
the number and length of stages. Doctors interpret the results in the
different ways as well. Be cautious. Many involved with tilt testing
are probably not knowledgeable or accepting about CFS yet. Also, many
CFS experts are still not yet knowledgeable about what it means to live
with OI, even if they are somewhat more experienced with some kinds of
tilt-table testing than they were 10 years ago.
They might do what
during a tilt-table test?
phases of the test, heart-rate and -rhythm data, blood
pressure, and symptoms are recorded while the patient is strapped to a
special table. The table has a board to place your feet on so you can
support your weight when tilted up as in standing. One popular protocol
for CFS patients, which has four phases, consists of lying on a flat
tilt-table for several minutes; tilting at 70 degrees (head up) for 45
minutes; lying flat again while starting and adjusting to an
intravenous (IV) adrenaline-like drug; and tilting again for 20 minutes
while still taking the drug. Symptoms can fade in and out at any time.
At some point if the body cannot compensate for position anymore, the
person may begin to pass out. The test is completed and the tilt-table
is lowered. Note: some protocols do not include the
drug part, or stress challenge. Some CFS patients will not
positive test without it, even if symptoms develop.
test, the patient should try to be as still and relaxed as
possible. Talking, shifting weight, and answering questions are
activities which can prevent blood pressure from changing a much as it
could and a false negative test may result. So if taking the test
brings on symptoms, but is considered negative, treatment for OI may
still be effective.
screening test for
OI can be done under a doctor's
supervision. It involves leaning perfectly still against a wall and
reporting symptoms as they occur, usually within 5-15 minutes. Have the
doctor watch for blue hands and feet, a sign of blood pooling or not
moving as well. A negative
result is not conclusive because there is no stress challenge or the
time may not be long enough. A good predictor of OI is hearing a person
groan with fear at the thought of physically having to stand
on line at a crowded grocery store. See also:
for Taking Standing Blood Pressure For POTS
treatment for OI?
available, but it is not often easy or
straightforward. Since there are two main triggers for NMH (improper
blood distribution and elevated adrenaline), many treatments focus on
one or the other. Unfortunately, sometimes treatments that help reduce
one trigger could make the other worse. So, often a combination of
therapies is required. As with CFS treatments, what works for one
patient will not necessarily work for another. There is a
amount of trial and error, demanding patience from doctor, patient, and
family members. Note that treatment ideas and strategies vary from
doctor to doctor.
There are many
types of treatments: medications, lifestyle changes,
diet modifications, and more. The goal of management is to prevent the
abnormal reflex from taking place and to support the body if it does.
Even simple changes can make a big difference. Medications available
for treating different forms of OI are numerous and quite varied in how
they work and none appear ideal. Working closely with a physician is
very important because people with OI and CFS are very sensitive to
drugs (and everything else!). Start with tiny doses to prevent adverse
reactions; often a low dose is all that is necessary.
lifestyle modifications, examine all of your activities for
their potential to set off an OI episode. Do you often stand or sit
still? Try fidgeting or walking around every so often. Do you feel bad
after scary or suspenseful books or movies? Giving them up until your
stress response is under control may help. Do hot showers make you
extra tired or lightheaded? Try cooler water or baths. As with
anything, make changes slowly and keep notes.
favorite all time helpful prescription medication for my types of OI
doesn't appear or not by itself on most of the places that list OI or
POTS drugs: time release prescription potassium (KCl CR). I went on it
because of Florinef, which make some lose too much potassium. I had to
stop the Florinef as it made me much sicker, even at minuscule doses. I
couldn't take beta blockers either. I did okay on Norpace for awhile,
but then it stopped working and we realized that required potassium to
be effective, too. When I stayed on just KCl CR for OI and other gentle
mineral OTC supplements, especially chelated calcium and magnesium in 4
small doses per day, I was the most stable. [Since starting the Chinese herbal protocol with FM/CFS
specialist Jonathan Gilbert, I've been able to come off all
meds and supplements and keep improving.]
Do try more of
these to reduce OI symptoms
Measure it, though. You can overdo it.
More liquids to choose from: Vitalyte,
Selectrolytes, E-lyte, CeraLyte or bone broth!
Fidget! Move often.
Add calm enjoyable entertainment, humor into your life.
Increase sodium and potassium - back off if have more
lightheadedness or anxiety.
Fluid and salts raise circulating blood volume.
(Salted nuts & potatoes as well as tomato juice are
great sources of sodium and
potassium to experiment with.)
Chelated calcium and magnesium supplements can help with sleep problems and anxiety.
Stay cool: use air conditioning, ice packs, and desk, floor, and portable fans;
Wear hats and white clothing in the sun.
Move constantly: shift, fidget, squeeze toes. Eat small, frequent meals of simple foods.
Try more protein and fewer carbohydrates. Or shift carbs to later in day.
Wear support hose or socks.
Tilt your bed frame with the head up - this helps retain water and salts during night.
Use relaxation techniques.
Even if you're not thirsty, drink more.
Keep arms low and legs below horizontal.
Walk regularly in a cool place.
Try easy water movements or only 30 seconds at a time on a mini-trampoline.
Evaluate current medications for effects on OI.
Increase fluids if attempting exercise or if under increased stress.
Start a gratitude journal/attitude.
Add more heart into your decision making
to Recline: Our Tips for Managing OI by Toni Marshall and Elly
Information Brochure on OI and Its Treatment
Do try less of these to reduce OI symptoms:
standing or sitting still: waiting in line, driving, desk work, doing
relationships, situations, movies, etc.
sun or other heat on the skin, hot showers, getting overheated.
meals or missing meals.
Foods that make
you feel strange.
Going from a
cold place to a warm place.
send blood to your feet.
may worsen NMH or dehydration (check with your doctor).
What to Avoid
working with these ideas and others, it is possible to
find ways to minimize fatigue, pain, thinking problems, nausea,
lightheadedness, anxiety, odor/chemical sensitivity, sleep problems,
Resources: Orthostatic Intolerance NOVA CFS/ME, FMS & OI Support Group
Orthostatic Intolerance (OI) CFIDS Association
Based on a
tri-fold brochure on NMH and CFS from 1995 by Elly Brosius, MS.
CFS/FMS/OI Support Group
provided by patients sharing experience with other patients. We are not
health or legal professionals. Please confer with knowledgable
professionals. Follow any suggestions from there or here at your own