I Think I Have Orthostatic Intolerance (OI)-Now What?

You have probably already checked out the symptoms. If not, start there - Symptoms.
Do any of them sound familiar? If the answer is yes, there is a good chance you have orthostatic intolerance.

• If the symptoms sound familiar and you have fainted more than 1 or 2 times in the last couple of years, there's a good chance you have an orthostatic intolerance condition.


• If your problem started after you had an infection or an injury that had you on prolonged bedrest to recover, there is a good chance you have orthostatic intolerance.


• If you have been diagnosed with Chronic Fatigue Syndrome (CFS) or Fibromyalgia, and the symptoms sound familiar, there is a good change you have an orthostatic problem.


• If you have been under treatment for cancer, or if you have been in the hospital and in bed for more than 14 days, there is a good chance you have OI if any of these sound familiar:
  • you get dizzy when you stand up too long or too fast
  • you are exhausted after you walk a short distance - can barely get back home,
  • standing up, kneeling and sitting in church makes you dizzy,
  • you are dizzy, get other symptoms included tired just sitting at the computer.

You need to know

It is not "all in your head". You are not "crazy". It is probably not due to anxiety or a panic attack either..

You did not make it up.

You are not "lazy" or "avoiding work or school" because you have fatigue or exercise intolerance.

You are not imagining it that you get tired after exercising.

You are not imagining it that you feel like you are in a mental fog sometimes, or that you can't find words or you substitute words, or that you can't do math anymore.

The other good news - It is not a fatal condition. (It can cause injury and problems if you faint and injure yourself)

The other good news - There is no known cure for these conditions but - there is hope for better management and reducing symptoms. Depending on what causes it, it can heal over time.

The other bad-good news - If you have it, you have a medical condition. You cannot go back to your old life - it has changed your life. BUT - you can go forward, deal with it, heal and have a life!

 

Need more information to see if you might have it?

You can do a simple Standing Test at home - if you have a blood pressure cuff, a clock with a minute hand, and someone to be with you in case you faint.  Just remember, if you get symptoms during the 10 minutes test, there's more information to share with your healthcare professional. If you don't get symptoms, that doesn't mean you don't have an orthostatic problem. It could mean your body takes longer to get symptoms, you wiggled or something with the test didn't work. You still need to talk with your healthcare professional about this.

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If you have been told you have a heart problem, it is better if you do NOT do this test at home. Get checked out by a physician.

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You can find instructions here - Standing Test - Symptoms, Blood Pressure & Pulse

What do you do now?

    •  Keep reading! Go over the pages and sections that interest you.

    •  Diagnosis -  OI can be diagnosed & managed by primary physicians but they do not always have the experience or
        resources to provide the education & guidance you will need.

    •  What kind of orthostatic condition you have

We have collected information about OI & put it in in one place to help you, your physician(s) & your other healing team members. Let us know if there are topics you would like learn more about.
    •  Over time, we will be holding webinars for people with OI, caregivers & healing team members to share information and find ways to create & implement realistic recovery plans. Check out Events

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