WHAT IS ORTHOSTATIC INTOLERANCE (OI)?

FIRST:   Orthostatic Intolerance is about the symptoms a person gets with standing up because there is not enough blood getting up to the head and the rest of the body. Orthostatic Intolerance is not a medical condition or a diagnosis. It

NEXT:   When someone has Orthostatic Intolerance (OI), it means two things:
     1) they have dizziness, lightheaded feeling, change in vision, weakness and other fainting-type
         symptoms when they stand up and
     2) these symptoms improve or go away when they lie down again. But there are many other symptoms
         with orthostatic intolerance that don't go away with lying down, or don't go away right away. These are
         symptoms that don't seem to be related - like mental fog, chronic fatigue, being unable to exercise
         without getting exhausted afterward to tolerate exercising, and more.
        

It isn't as important or serious as high blood pressure, right?

It depends on what you consider "serious". People are aware that high blood pressure can be a serious medical problem. They know that high blood pressure can cause kidneys to fail. It can cause heart disease, heart attacks and strokes. It is a potential killer if it gets high and isn't treated. But people with high blood pressure don't usually 'feel' their high blood pressure. It doesn't interfere with everyday life and activities. It is serious and needs treatment, but it isn't disabling. It doesn't interfere with walking or showering or working.

Wrong - Orthostatic Intolerance is important and serious

We need blood to get to our head - to our brain and the rest of our body when we stand up - or we can't do things standing up!    Getting symptoms with standing up has a major impact on a person's life. It is essential to everything we do, everyday, all day. True - it not usually a direct threat to our life; it isn't linked to strokes or heart disease. People do not generally die from it - although accidents can happen with fainting and falling and from the conditions that might be causing it.

It interferes with a person's everyday life - at home, school and work. The reality is that far more people are disabled by orthostatic problems than they are by high blood pressure - whether the high blood pressure is under control or not.

Having orthostatic intolerance is as disabling as major chronic medical conditions like heart failure and COPD.

Think about it - if you do not have the problem, imagine what it would be like if you got dizzy, had tunnel vision and felt weak every time you stood up or sat up too long? Everytime you tried to brush your teeth or take a shower? What about fixing a meal, doing dishes or the laundry?

When it is out of control, people cannot even do the most ordinary of things - like stand at the sink and brush their teeth - without feeling dizzy, getting headaches, short of breath and fainting or nearly fainting. If that isn't enough, there is the fatigue (pure exhaustion) that comes afterward and can last for hours or days. There are also mental symptoms - brain fog, problem reading, finding words, doing math, remembering things.

It interferes with being able to go to school or to work and to do what you need to do while you are there. This is critical because many of the conditions affect teen-age girls and other young adults. It affects school, vocational goals, earning ability and normal social activities and development.

Yes, it can be serious

When the orthostatic problem is caused by other conditions or other medical conditions are also there, it can lead to earlier death. Orthostatic intolerance in the older person, especially someone who has neurally-mediated hypotension that is due to to another condition (like diabetes or Parkinson's or Multiple Sclerosis), is a much more involved situation. It has a bigger impact on the person's life and their overall health. How well a person does depends more on how the main condition is doing, whether it is stable or getting worse. Having orthostatic problems can also increases the chance of death.

Everyone says 'you don't look sick' - is it an 'invisible disease'?

No! If you look at it as an individual - nearly all medical conditions are 'invisible'. If you look at the people around you, you can't tell by looking at them who has had a heart attack, who has a high blood sugar and diabetes, who has Crohn's disease - or most of the medical conditions out there.

Yes! As a condition that is recognized, diagnosed and managed by healthcare professionals.
It would be more accurate to say that it is missed, it isn't thought of. If you don't think of something as a possible diagnosis, it's not as likely to be found and diagnosed. It's more of an 'overlooked' or 'missed' condition and diagnosis.

Why getting a diagnosis helps. There are many who argue we shouldn't label conditions or diseases, it makes people think of themself as "sick" But there are times when getting a diagnosis for your problems is exactly what you need. This is one of those times. It confirms your belief that something is wrong and it starts the ball rolling for managing/treating it.

Getting a diagnosis provides information about the problem is, how all the symptoms are connected, why you feel the way you do and what needs to be done. It helps explain why you behave the way you do - why you can't always make it to the things you planned, etc..

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This website has been created to help people with OI, their family, friends, caregivers, health professionals and healing team learn more about OI and share ideas.

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To find out more about the types of orthostatic conditions, like fainting, low blood pressure, fast heart rate, 3 Types by Orthostatic Problems

To learn more about what causes conditions in general, go to Is it the Heart or Nervous System Problem?

If you need to get a diagnosis or want information about medications, check out the section on Medical Care.

The section on Taking Care gives details on all the basics for everyday living.

If you want to know more about the symptoms, follow the articles listed here.

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