Friday, January 07, 2011

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.


  1. Wow, sounds like you found a good treatment! Nice work. I think I have OI, I think drinking lots of fluids and eating lots of salt has been helping, (advice I got online) but I think I should see a doctor about it. Any advice on what kind of doctor would be best? Or should I just ask my internist? Thing is I don't have any pamphlets, am not as well informed about OI as I would like to be and don't see myself having the energy to accomplish that anytime soon.

    There was one time a rheumatologist sent me to some kind of doctor for a tilt table test, but I never did it. Some other doctor told me not to bother...I forget who. So many doctors...


  2. I'm so glad that it's helping you: every little bit helps. What a timely post - On Monday, I just had my first OI/POTS related doctor's appointment in a few years. I realized my POTS is getting worse, and that there must be something we haven't tried, medication wise (Florinef didn't work for me either). He was going to do some more research (through my records, at the very least), and I have to go back on Monday... beta-blockers were on my list, so I'll have to see what he says about them.

  3. @Allison -

    A tilt table test is the official way to diagnose OI, but most people with CFS don't need to bother with it (and it's likely to make you very sick). CFS causes OI - if you have CFS, you have OI, as further evidenced by the fact that salt and fluids seem to be helping you. Or your doctor can do a simple in-office test: you lie quietly for 10 minutes, the nurse takes your BP and pulse. Then you stand up and stand VERY still - no wriggling or fidgeting, no movement at all, while the nurse takes your BP and pulse again every minute or so. If your BP drops by more than 10-20 within 10 minutes, you have NMH; if your pulse rises by more than 30 beats in 10 min, you have POTS.
    If you e-mail me, I can send you info to take to your doctor, plus forms Dr. Rowe developed for this in-office test.

    @NTE - Also consider midodrine, another med I didn't mention in my post that is frequently used with good success for treating OI in CFS, either with or without Florinef.

  4. I wish there was a way for me to get the VA to do this but they won't. They make you lie, sit, stand and take your pressures at each and declare nothing is wrong.

    Today, I walked around the corner, did my banking thing and came back with dizziness so bad and my chest hurting I had to lie down. My blood pressue was 158/94.

    The VA doctor I see don't think I have high blood pressure because there is no rhyme or reason (in there eyes) to the irratic spikes (or lows) and they won't even consider OI/POTS.

    I'm having a lot of trouble with it lately and have been laying pretty low because of the bad dizzy spells and irratic heart beats.

    I just don't know how to get tested properly. Errr.

  5. Very interesting -- I hope it continues to work wonders for you -- with no nasty symptoms to speak of!

  6. I'm following up with Dr. Klimas soon and will probably ask her to add a beta blocker since Florinef isn't helping me either (although I might still have room to increase the dose on it). Beta blockers do seem to help a lot with OI! See this thread for more discussion:

  7. I had heard of taking midodrine for OI but I don't recall reading about beta blockers in Dr. Rowe's literature. I, too, stopped the Florinef as it wasn't helping. I'd love to have any info you have on beta blockers.

    I'm so glad that this may make a big difference for you!

  8. Please email me the paper. I think I've been having trouble with this. Funny you should write this post Dominique just posted that she has been having tons of trouble with POTS and doesn't know how to treat it. Could you send her some info too please?

  9. David - thanks for the link - I was going to search the web today for experience in using beta-blockers for CFS, so I appreciate you saving me some trouble!