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What Is Orthostatic Intolerance (OI)?
First, a quick explanation, in case you don't know about OI. The endocrine and autonomic nervous system dysfunction in ME/CFS make OI a natural outcome of our disease. Just about everyone with ME/CFS has at least one type of OI (and many of us have more) - some studies show more than 97%! OI also seems to be very prevalent in patients with fibromyalgia and Lyme and other tick infections.
OI basically means an inability to hold our blood pressure (BP) and heart rate (HR) steady when we are upright (sitting up but especially standing). The most common forms of OI seen in ME/CFS are POTS (Postural Orthostatic Tachycardia Syndrome) - where the HR goes up when you are upright - and NMH (Neurally Mediated Hypotension) - where the BP drops when you are upright. There are also rarer forms of OI, like where the BP rises when upright or where BP and HR jump all over the place. If you can't hold your BP and/or HR steady while standing still for 10 minutes or more, that is OI.
This blog post explains all about OI - what it is, why we have it, how to diagnose it, how to treat it, and our own experiences in treating OI.
This excellent article on OI by Dr. Peter Rowe is more comprehensive, covering all types of treatments for OI. It is written in plain language and can be understood by patients but is also perfect for printing and sharing with your doctor.
If you prefer to watch a video rather than read, here is an excellent webinar by Dr. Rowe on OI.
The gold standard for diagnosing ME/CFS is the Tilt Table Test (TTT), which some doctors will insist on; however, you can more easily (and far more cheaply!) diagnose OI with a simple 10-minute standing test done in any doctor's office.
This blog post explains how to do this kind of in-office standing test and our own experiences doing them. There is a link at the end to instructions and forms to print for your doctor, or you can print more detailed instructions & forms at this link (yes, the test was originally designed by NASA!).
Whether you get a TTT or do the in-office standing test, you and your doctor should be aware that OI testing may not pick up your OI in a single test (as I explained about my own test) - this study documented that OI testing unreliability and also has some tips about what time of day might produce more accurate results.
So, now you know you have OI (told you so!). The good news is that there are many different treatments available, and treating OI often brings dramatic improvement in all symptoms and allows you to be more active without crashing afterward. The most complete and comprehensive review of treatments (both medications and lifestyle changes) is in Dr. Rowe's OI article. Again, share this with your doctor - since Dr. Rowe is at Johns Hopkins, he has instant credibility and most doctors are glad to learn about OI (if yours isn't interested in learning, then you need a new doctor).
One thing you can do to help manage your life is to measure your HR and stay within your limits to prevent post-exertional crashes. This is mind-blowing stuff - once you see for yourself how your HR skyrockets when you stand up, you will wonder how you managed to do anything since getting ME/CFS. Without any treatment for OI, the heart rate monitor (HRM) can only help you determine what is within your limits and what is beyond them, but with treatment, you will see from your HRM that you can do more without going past your limits...which is life-changing! Then, you can use your HRM when you are active to stay within your limits.
One way to bring HR down to normal levels and also stabilize BP is with low-dose beta blockers. This blog post provides detailed information on how to use beta blockers to treat OI (hint: lower doses than normal and LOTS of trial and error) and our own experiences. They have been life-changing for both my son and I, allowing us to be MUCH more active without crashing. Crashes from over-exertion have now become rare for me.
My sons both had excellent results with Florinef, which often works well for kids and teens (and is worth a try for adults). That is covered in more detail in my OI overview post.
For those who are severely ill and/or have significant pain issues, a specialized form of Manual Physical Therapy for ME/CFS and EDS is one option that has helped a lot of patients. Don't panic - this isn't normal PT where you use weights and other equipment to exercise. It starts out with the patient completely passive and incorporates an approach called nerve gliding, which can help immensely with pain and decreased mobility issues.
Other treatment approaches are covered in detail in Dr. Rowe's article.
So, YES! You almost certainly do have some form of OI, and treating it can bring vast improvements to your symptoms and your life.
Have you been diagnosed with OI yet? What treatments have helped you?