Trying a New OI Treatment

(NOTE: If you don't know what I mean by OI or POTS or NMH or think OI doesn't apply to you, take a look at my previous post on Orthostatic Intolerance in CFS - OI is behind many symptoms of CFS and is treatable).

So, I've mentioned several times here this week that I've been stuck on the couch, with my heart pounding as if I were running all week.  I got a heart rate monitor for Christmas (a topic for another post), so besides feeling like my heart was going to burst out of my chest, I could see that my pulse rate just sitting up on the couch was around 100-105.  Standing up and doing something simple, like putting in a load of laundry, shot it up to 120.  I got out of the shower this morning and strapped the monitor back on, and my heart rate was 135!  It was like I was running when I was barely moving.

Although POTS this severe is not typical for me, this week got me thinking about my OI.  I drink lots of fluids and ingest huge amounts of salt (lots of V-8 this week and even mugs of chicken bouillon!), but it's been years since I've tried medication for OI.  I briefly tried Florinef years ago, which has worked miracles for my sons, but it rarely works for adults, and I didn't see any effect.  I've thought of trying SSRIs (a type of antidepressant sometimes used to treat OI), but that would require changing my sleep medications, and I can't do that.  My sleep dysfunction is the one aspect of CFS I have effectively treated, and I don't want to mess with my sleep!

That leaves beta-blockers.  I'd read about using beta-blockers for treating OI, and a friend was telling me on the phone this week that it has worked for her 15-year old daughter (whose POTS was so severe, she was fainting multiple times each day).  We share the same doctor, so I went to see her today, and brought along my hand-outs!  I always bring hand-outs to my doctor's visits.  She read the information I brought and said, "This is an easy one to say yes to." (as opposed to most of the treatments I ask her about!)

So, are you ready for this?  I picked up the medication and took my first dose in the car.  Within 1 hour, my heart rate had dropped by 25 points!  It was in the 80's for the first time all week, and sitting up at my kitchen counter, it settled down to about 75.  Unbelievable!  I was stunned.

I should emphasize that, of course, I need to give this new treatment more time before I draw any conclusions - there could be side effects I can't tolerate or maybe it won't affect how I feel very much.  But just from this one-day trial, I am very excited!

Here's what Dr. Rowe, CFS/OI expert at Johns-Hopkins, says about using beta-blockers to treat OI in CFS patients:

Beta-blocker medication " blocks the effects of adrenaline (epinephrine), and acts both to decrease the heart rate and to prevent the forceful heart contractions that may help trigger NMH."

So far, so good!  I am really hoping this works for me so that I can try to gradually increase my activity level, take short walks, etc.  My life has been pretty restricted lately.  I've been trying to get to the grocery store since Tuesday!  My husband finally went with me today and did all the pushing, lifting, etc. because we had run out of food.  Don't worry - I'll keep you posted!

P.S. Dr. Rowe's article on OI, referenced in my earlier OI post, is no longer available at the link I posted.  An updated version is available here for downloading.  I highly recommend you read this article and share it with your doctor, whether you are interested in trying medication to treat OI or would prefer to stick with non-pharmacological approaches (he provides details on all of this and more).  If you prefer, you can listen to Dr. Rowe's presentation on OI or view the slideshow.