Questions and Answers (Q&A), Our WayQ. I may have Orthostatic Intolerance, but I don't get it.
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Questions about What it Feels Like to have OI
Did you say I might have OI if ...?
I'm tired, overwhelmed and don't want another condition.
Why does it help to know about OI?
What does it feel like to have the different types of OI?
How can I relate to it, understand when it is happening to me?
A. Great question! Has this happened to you?
You might have Orthostatic Intolerance if….
Sometimes when you feel badly and you go lie down.
After a little while you feel better.
You say to yourself, “Hey, I feel better, I should get up and do something.”
So you do.
After a few minutes, you start to feel badly again.
You lie down again.
Not immediately, but after a little while, you say to lying down self again,
“Hey, I feel better. I should get up and do something. This is weird.”
You go do something else, either sitting or standing, perhaps doing some laundry or dishes or watering the plants, perhaps doing some email at a desktop computer, perhaps trying to gather what you need to make a phone call about bills or something. Maybe you just try to eat at the regular table, in a regular chair, with your feet on the floor.
After a few minutes up and around, you start to feel badly again… maybe in specific ways, maybe just a vague feeling of “I feel bad.”
On your way to lying down, you might say something to yourself like,
“This is strange. What’s wrong with me? Why can’t I keep going. If I feel better after lying down again, I must not be sick, but I feel so sick."
It feels unreasonable because you have never heard of such a thing or been taught about it, yet you keep doing this strange dance of having to recline or lie down and getting up and trying, pushing to do standing or walking things after you felt better from sitting or slouching or lying down.
Orthostatic Intolerance can provide a logical and supportive explanation for this "get up and have to lie down repeatedly dance.”
Or if not that, maybe this has happened...
You go to the grocery store or the post office because you feel okay. As long as you keep moving on your errands, you feel okay for you. You'll get through it.
But, if there is a long line at the checkout, or if you have to stop to fill out address forms at the post office or read labels at the grocery store, your experience starts to change. You could find yourself perhaps getting more impatient, perhaps to the point of irritability. You could find yourself overheating and having to whip off your coat suddenly. You could find yourself wondering why you thought you were well enough to make this trip and doubt your abilities to assess yourself. You could start to feel desperate to withdraw or get away, to only do part of the errand or give up and get back to the car.
-Elly Brosius, 2010
Q. I'm tired, overwhelmed and don't want another condition to learn about!
Why does it help to know about OI?
What is in it for me and perhaps my ME?
Knowing about Orthostatic Intolerance (OI) gives you ways of approaching tasks differently so you can become more consistent and feel less weird. Knowing and using what you know of OI can help you be more understanding of and gentle with yourself. Knowing more about what is going on in your body and how your mind reacts can make both your rest and your activity more productive or efficient and it can make your communication with those around you about what is going on and how to help much clearer and accepted.
you are extra tired and/or have extra tension from extra pain, extra
doing, or from extra stress, the body will be less efficient at
overcoming gravity’s effect on blood circulation. More blood will
possibly stay in the legs than usual, or it could take more energy to
move it around. Blood distribution becomes challenged, especially if
one is already experiencing dehydration.
Orthostatic Intolerance literally means being intolerant - becoming symptomatic - while being upright and still. It is a condition that frequently co-occurs with CS and FMS. Learning more about it and learning to work with it can make a significant difference for some comfort and things making sense while living your life. Understanding about Orthostatic Intolerance and its involvement in CFS and FM helps one find many more coping techniques and strategies for symptom reduction.
Being told to rest is somewhat helpful, but more helpful is being
instructed about how to rest and when and why (e.g. with feet up
reclining, while sipping room temperature water, fidgeting, with head supported and not too much visual stimulation).
Learning how how to do activities so as not to set off the OI that can
lead to a cascade of fatigue, pain and cognitive problems can help you
fill up your reserve tank a little and keep crashes from going so deep.
you can learn just a bit about why some activities like standing to
brush teeth, or lifting plates into an upper cabinet, or doing dishes
while standing still and hands in hot water can make you worse, you
have extra motivation and techniques for taking care of yourself.
You can’t start getting better until you stop getting worse.
Even though it can be overwhelming and inconvenient to learn about yet another condition, it isn't as difficult as it might seem. These syndromes have similar symptom lists and it might be a shift in perspective and focus that is the main thing needed. Learning about this pays off with helping to unravel some of the mystery of feeling so bad and the when and why, with empowerment for things you can do to help yourself feel more stable with increased functioning.
-Elly Brosius, 2010
For more, see our more general and overview Q&A page about OI.
Q. What does it feel like to have the different types of OI
A. That will probably vary from person to person, but giving some of the common sensations I have experienced and heard others mention may be of help here.
heard some experts say you can't have more than one type. Bah! I've
experienced more than one, alternating or provoked with different
triggers. Perhaps it is true you can only meet one definition at a
time. They want the convenience of treating only one kind or testing
for only one kind, but that may not reflect the complexity of what you
feel and have going on. Treatment for one kind often makes another kind
worse (see Q&A Anesthesia page about dental experiences).
The feels kinda good, get things done fast until you crash kind of OI / dysautonomia
This one is the go go go part of the nervous system. Hyper. Hyper-adrenaline. Can't relax. Always have to be doing something or doing something while doing something else, too. It is set off by an increase in stress and need for circulation which could include just trying to stand still. Exercise can trigger this one. The heart can get going a bit fast and sometimes you can feel it directly as heart beats or maybe as palpitations. If you are forced to stand or sit still like at a formal dinner or concert, standing in line, the urge to get up and move can become very big. Sometimes a leg or both leg will start to bounce under the table or they might seek railings or boxes to put the feet up on. Walking or doing makes you feel more calm because the mind gives praise for doing and more doing and because the muscles moving and flexing helps circulation so the heart doesn't have as much to do. This feeling better from doing only works until you run out of energy and collapse, but feels so worth it even if you know the collapse is coming. Sometimes you can’t lie down because you are too wired and tired. Many people like this state because they get more done, but it does deplete you in the long run. Perhaps. without realizing it, those in this state are inviting the crash, relapse, flare because they don't know how to rest or deal with what the nervous system is doing in any other way yet.
These feelings are commonly described by people with POTS, postural orthostatic tachycardia syndrome. POTS is the condition where if one is forced to stand still, the heart rate and sometimes blood pressure go up more than is normal. The triggers are usually stress or stimulants. Caffeine is one stimulant to the heart we are familiar with, but there are many more, including many mediations and supplements which tell you they are "for calming!" With POTS, the feeling to pace back and forth is stronger than the one to pace your activities. There are desires to keep moving, to get away or desperately get to something. It feels nervous, or as the saying goes, like you are "on your last nerve" and as it gets worse, at the end of what you can handle.
People with POTS having a POTS episode are the ones I hear talking about that sudden overheating flash. They have to finish other people's sentences and have trouble stopping talking. They really want to feel in control of their situation and maybe even other people because inside more and more feels out of control. They want to share all they have learned and help others even when not asked.
Popular but misguided treatments after one crashes often are about getting you back to squeezing every last drop out of yourself so you can feel productive again while not having to feel the desperation of the nervous system though it is likely still there. Some of these treatments might help in the short run, but such an approach rarely leads to having healthy balanced energy and long term success. Feeling extra wired, using stimulants often makes for more dehydration which increases symptoms of the next kind of dysautonomia described.
The collapsing within, withdrawing, fading out kind of OI / dysautonomia
This one feels like the stuffing inside you is gone. No strength left. Hollow inside and you can't go on. Nothing is even interesting anymore because can't think. Zone out. Going, going, gone and yet it isn't relaxing either. It feels bad. Awful sick and depleted. Sometimes the trigger for this one is breathing warm air. Sometimes the trigger is getting too cold and can't warm up. Can't seem to do anything, never mind finish a task. It can be set off by alcohol in some people or dental anesthesia if it feels like everything inside just oozes to a place of non-functioning, especially if sitting up. It can happen starting in the brain if asked a question about a topic that you have shut off from thinking about. The probe to that subject can change the circulation and be experienced as cognitive dysfunction or fog. Not moving enough while sleeping or lying down can trigger this. If you ever suddenly wave an arm or a leg or turn over, you circulation might be too slow from being too still and the body is so smart and trying to help.
It is difficult to hold up one's head and you find yourself propping it up on an arm or lying it down on the head. You can't hold yourself up but there is relief with head supported or down. Eating can make one nauseated from the blood having to divert away from the heart and head. Heat can produce nausea and more hollow feelings and scattered thinking.
Dehydration adds to the feeling bad.
Eating sugar adds to dehydration and more insulin in the blood which can add to more fatigue and slower circulation.
Many people hate this state because they feel so useless, like burden, with no insight into when and how can feel better, stay out of this collapsed inward place.
These feelings are commonly described by people with NMH, neurally mediated hypotension. It is also known as DELAYED orthostatic hypotension. There is a sudden and short-lived (difficult to capture even on a tilt table test) drop in blood pressure that is like what would happen in a faint, but not that severe. It is like getting half way there and then staying conscious but not quite being about to snap out of it and reset. It is not the same as a drop in blood pressure that happens immediately upon becoming upright. It can take up to 45 minutes of pure standing still to develop. Doctors and nurses often think we are referring to the short, no delay kind called plain orthostatic hypotension when we try to explain about orthostatic intolerance or NMH. They often have no experience or training in the delayed kind, and they don't often don't want to know or be taught by a patient. If you are asked to have blood pressures taken while lying down and then after standing and only after a couple of minutes of standing, they are looking for plain OH and won't get a reading that reflects how badly you might be feeling. Then you might get dismissed which can add to the collapsing within feelings.
Deep breathing can be a trigger for this kind of OI / dysautonomia. It is supposed to help you relax, but for some they cannot handle it as it precipitates many other feelings, including perhaps starting an episode of POTS. See Q&A breathing.
With NMH, the way the circulation and nervous system and brain are interacting, the feelings persist where it is too scary to try something new or that it wouldn't be worth it. One's capacity to get involved is exceeded. There are desires to get to a safe place, hidden, because how you might be with other people would be judged as not good enough by yourself and/or by others. It feels weary and weak and why bother-ish and all is lost and yet there is still hope and optimism in a weird way even if you can't yet act on it.
Vomiting, if one gets nauseated enough, sometimes resets the nervous system and helps it find its normal for you center again. Sometimes fainting all the can reset this, but that would have other consequences including some post fatigue.
People with NMH having an NMH episode in which lost their blood pressure for a second or two are the ones I hear talking about that sudden having trouble while driving or sitting at the computer after awhile. They lose the words they were going to say or pick the wrong word, maybe they even stutter. They really long for when they felt in control of anything, especially their body, because it feels so uncoordinated. These are the folks who talk more of strong smell sensitivities, food reactions, and sensitivities to sounds and conversations.
Another kind with heart focus
There is another group patients, or times in patients with other labels lives, where the focus tends to be more on the palpitations and chest area pain that doesn’t quite go with an organ or specific muscle. There is extra talk difficulty or shallow breathing. There is worrying that what they are experiencing is a heart attack. There are emergency room visits or paramedics called sometimes. There is more panic and anxiety discussed.
This group of people may come to learn they have, are labeled with Mitral Valve Prolapse Syndrome (MVPS/D) Dysautonomia. The consensus is that the symptoms come from the autonomic nervous system and circulation, not from the heart valve even if the blood regurgitation there is severe. Some have been told they have a heart murmur, and sometimes that heart mummer is there and sometimes not. It can be heard more if one is dehydrated, in different positions, or ate or drank different things one day!
Reviewing the kinds of Orthostatic Intolerance (O.I)
One of my favorite articles listed four things under the umbrella of Orthostatic Intolerance, POTS - postural orthostatic tachycardia syndrome, NMH - neurally mediated hypotension, MVPS / D - mitral valve prolapse syndrome / dysautonomia, and Idiopathic (of unknown cause) Hypovolemia (low blood volume).
The names and technical descriptions are somewhat interesting and helpful to know about, but talking to each other about them and how they feel might be more illuminating in a support group setting, especially when we include our compensating behaviors, treatments, and observations of triggers and causes that may have started earlier in life than we first put together.
Some say CFS and FMS are conditions, states of being, that one can end up with after years of undiagnosed and untreated OI. Some say OI is a symptom or collection of symptoms within CFS and FM. You get to decide for yourself if either of these or something else makes more sense and helps you cope.
Management is a strategy employed with things you can do to maintain the level of functioning you have. Drinking more water and having more salt to maintain more blood circulating is a management strategy. It doesn't get to the root of the problem or make it go away. It helps you function with the problem, and that might be more than you've ever been able to do before. Much of what doctors prescribe are managements, not treatment for resolving syndromes and chronic conditions. Note that there are some who have recovered from orthostatic intolerance, and some who have recovered attribute it to specific things. One key recurring theme in that area is learning how to handle stress in new ways and to learn to perceive fewer things as stressful. That is when the nervous system and other systems will have a chance to express their healing and recoordination abilities.
OI overlaps or co-occurs with TMJ, IC, IBS, Chronic Lyme, MCS, more. When the body is undergoing other syndromes and symptoms, it is another set of things for the autonomic nervous system to keep up with, and sometimes it can't anymore. You can help it out. You are the one with you all day. You have the most influence. You can use your talents and skills in new ways to support your own recovery.
-Elly Brosius, 2010
For more, see our more general and overview Q&A page about OI.