The Northern Virginia
CFS/ME, Long Covid, FMS, & OI
Support Group

A. Great question! Has this happened to you?

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.

I've 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).



With blood circulation struggling due to gravity, not being able to maintain enough hydration, and increasing sensitivities among other things, imagine for a moment how it makes sense that there might be increased fatigue and fog, stiffness, pain, tension, feeling like can’t get enough oxygen, and more could happen. Think for a few moments about some of your episodes and stressful times... and then compare and contrast....

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)

The most general term that includes OI is dysautonomia, dysfunction of the autonomic nervous system. The autonomic nervous system used to be called the Involuntary nervous system years ago while many of us were in school. They had to change that name because some people really can influence and control things that were thought to be always automatic including breathing, sweating, heart rate, blood pressure, pupil dilation, digestion, urges for hunger, thirst, having to urinate or defecate or burp. Anytime we get symptoms in these area it can be a sign that the autonomic nervous system is overwhelmed a little and struggling to take care of what is automatic.

There are other kinds of dysautonomia that do not overlap with CFS and FM, some genetic types for example. Be careful when googling those as they won't not apply.

Under the umbrellas of dysautonomia is another umbrella term encompassing many syndromes or symptoms, Orthostatic Intolerance, OI for short.

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.

For more, see our more general and overview Q&A page about OI.