Friday, February 05, 2016

New Study: Difficulty of Diagnosing POTS

A new study confirms what I have heard from hundreds of ME/CFS patients: Testing for Orthostatic Intolerance (OI) is not fool-proof and often shows a normal response even when OI (in this case POTS) is present. This is great news for those who have the symptoms of OI but whose doctors dismissed it when a single test came back negative. There is a summary at this link that you can print to share with your doctor (and he or she can access the full article).

As a quick recap for those new to these terms:
Orthostatic Intolerance (OI) is a group of conditions where the patient has trouble maintaining a steady blood pressure (BP) and/or heart rate (HR) while upright.

OI is an integral part of our disease, occurring in over 97% of ME/CFS patients and about 75% of those with fibromyalgia (and many of those with Lyme Disease).

The two most common forms of OI in ME/CFS are Neurally Mediated Hypotension (NMH), where the BP drops while the patient is upright, and Postural Orthostatic Tachycardia Syndrome (POTS), where the patient's HR gets higher when he or she is upright. Most ME/CFS patients have NMH, many have POTS, and quite a few of us have both conditions.

OI underlies much of what we think of as ME/CFS and fibro symptoms - brain fog, low energy, lightheadedness, post-exertional crashes, and more. The good news is that treating OI often brings dramatic improvement to ALL symptoms. You can read more about OI and how to treat it in this excellent article by an expert on OI in ME/CFS, Dr. Peter Rowe from Johns Hopkins. This article is also perfect for printing and sharing with your doctor. Here are links to a webinar Dr. Rowe did on OI, along with some Q&A.

So, what does this new study mean? It clearly shows that a single OI test (typically a tilt table test or an in-office standing test) is NOT always sufficient to show POTS (this study focused only on POTS but the same applies to NMH).  The study showed differences depending on the time of day the test was administered and concluded that the diagnosis can be missed with only a single test. For this reason, they conclude that multiple tests at different times of day (or in the morning when their study showed POTS showed up more clearly) are best. While tilt table testing is expensive (and really unnecessary), any doctor can do a simple standing test in his or her office in under 30 minutes. Dr. Rowe can provide instructions and a form for this (or you can e-mail me).

Bottom line? If you have ME/CFS, you have some form of OI, so don't draw conclusions based on a single OI test. Further, if you have the symptoms of OI but your test says you don't have it, then additional testing or just treating would be advisable.

If you are in that situation, where a single OI test did not show either POTS or NMH, then show this study to your doctor and request another test...or list your symptoms related to OI and ask to try treatments. That's what Dr. Rowe suggested when we were having trouble testing our 8-year old son many years ago - he said that kids that young just can't stand still enough for a valid OI test (especially true for our son!), so he advised our pediatrician to try treating his OI based on his symptoms. After a month on Florinef, he was mostly symptom-free (his ME/CFS was milder), much as treatment with Florinef allowed our older son to go back to school full-time. Florinef works less often for adults, but my older son and I have had excellent results with beta blockers, which have greatly reduced our post-exertional crashes and allowed us both to be much more active.

One more note from personal experience: I have had clear NMH and POTS ever since I got ME/CFS, and my doctor has seen my BP drop many times, even with just a few minutes of standing up. However, when her office did an "official" OI standing test for me for my Social Security Disability appeal, the POTS showed clearly (I was actually scaring the tester because I looked so bad within 10 minutes of standing!), but my results did not meet the official criteria for NMH. Fortunately, my doctor recognized the limits of a single test and explained in the letter she wrote for me that she had witnessed the BP drop on many other occasions. So, I was glad to see this study and that someone finally confirmed what experience has shown!

Have you been tested or treated for OI yet?


Unknown said...

Hi Sue

Off for an emergency cardiology appointment tomorrow.

Before realising that I had CFS 7.5 yrs ago I had an erratic heart rate along with the fatigue. This righted itself after many months but left me with the exercise intolerance - it was your article that I found on this (remember me electric mountain bike in the highlands of Scotland).

A few months ago I started having problems again with my heart rate all over the place. Had a few bad episodes that end up with me a couple of weeks ago ending up at docs A&E. I was lucky to see my doc that day and she said that I shouldn't be that bad and it is had to tell where the heart condition and CFS kick in.

Was put onto POTS by a doc at the CFS association in UK and couldn't believe how many symptoms matched mine. Showed my doc this morning she found it very interesting. So going armed with articles to show the consultant tomorrow as I don't know how much he will know about CFS.

My doc is great and we have to see how this pans out

Sue Jackson said...

I'm glad to hear you are finally looking into OI, Alice (POTS is one type of OI) - it is an integral part of ME/CFS, not a separate diagnosis, and causes many of the symptoms we experience as a part of ME/CFS. Glad to hear you are seeing a cardiologist, but be sure he/she is looking at more than just POTS and also evaluating you for NMH, the blood pressure side of the OI equation (NMH is even more common in ME than POTS is).

This is an excellent summary of OI as a part of ME/CFS, written by the world's #1 expert:

Besides reading this article yourself, this is also excellent for printing & sharing with your doctor. Usually, even cardiologists who are familiar with POTS do not understand how OI (both POTS and NMH) is a part of ME/CFS, and this document helps explain it.

The good news is that there are LOTS of different treatments for both POTS and NMH - and they will help to improve all of your ME/CFS symptoms, often dramatically.

Good luck & let me know how it goes!