Switching to Long-Acting Beta Blockers

(NOTE:  I am not a doctor and do not intend to offer medical advice to anyone since we are all different.  In this post, I am just hoping to share my own experiences with a medication that has helped me.  You should talk to your doctor before trying any treatment yourself to make sure it is appropriate for your own particular circumstances.)

I made a change in my medications last week that has so far yielded great results and a definite improvement in my quality of life!

[For those who aren't regular readers of this blog:

First, go back and read this post on Orthostatic Intolerance (OI) if you don't know much about it or think it doesn't apply to you.  Everyone with ME/CFS has some form of OI (difficulty maintaining a steady blood pressure and heart rate when upright, whether they go up or down or all over the place) which is caused by autonomic nervous system dysfunction. Check out my post on In-Office OI Testing if you want to get tested yourself.

Then, read the post that explains how OI relates to exercise intolerance aka post-exertional crashes.  And finally, catch up on my past experience in using beta blockers to treat my OI.]

 So, almost two years ago, I started taking beta blockers to help treat my OI.  They helped me immediately and since then, I have been able to be much more active - taking walks, using light weights, and even going to the grocery store, all without crashing later.  My doctor started, in January 2011, by prescribing propranolol which is a short-acting beta blocker.  She figured that would give me the best flexibility for adjusting the dose throughout the day.  I settled into a pattern of taking 20 mg as soon as I woke up in the morning, another 20 mg after lunch, and occasionally, a third 20 mg dose after dinner, if I was going to be active or out in the evening.

But there were some problems.  The biggest problem was that by the time I woke up in the morning, I had no beta blockers in me, so my POTS would be in full-on attack mode - just getting out of bed, brushing my teeth, and getting dressed would send my heart rate soaring up to 120, 130 or higher (in fact, my POTS may have been worse at that time, due to a rebound effect from going without them all night).  I had to severely restrict activity in the first hour after I got up - couldn't shower or carry the laundry basket downstairs or anything else.  I had to lie quietly on the couch and wait for the beta blockers to kick in.  My friends like to take walks in the morning, and one of them works and needs to walk early, but I was here in the house, waiting for my heart rate to calm down.

Meanwhile, my son, who was barely able to get up of the couch for the past 18 months, started long-acting 24-hour beta blockers at the end of August.  He started college a week later and is doing GREAT.  He not only walks all over campus, he also plays Frisbee with his friends, has only missed 3 days' of classes all semester, and is even doing a workout video called Insanity (!) with his friends.  Beta blockers weren't the only factor in his improvement, but they were one of the biggest causes of this miraculous change.

Finally, besides my son's experience, I heard that several other young friends of ours with ME/CFS were also much improved with long-acting beta blockers, most of them prescribed by Dr. Peter Rowe, who is one of the world's foremost experts on pediatric CFS and OI.  He recommends taking a 24-hour beta blocker at bedtime; he says when taken that way, it will help improve sleep as well as overall functioning because random bouts of tachycardia disrupt sleep during the night for people with POTS.

So, given all this, I asked my doctor if I could switch to a long-acting beta blocker.  She considered the ones my son takes and others that other patients of hers take, but decided the best thing for me was to stick with propanolol which - surprise to me! - comes in a long-acting variety also.

The first night I took it (60 mg), I woke up the next morning and put my heart rate monitor on immediately.  Right out of bed, my heart rate was only in the 70's!  I washed up, got dressed, and even carried a load of laundry downstairs, all the time with my heart rate varying between 70 and 90 - a huge improvement!  However, during the morning, I noticed that my heart rate would suddenly jump up above my AT (about 103) - when loading the dryer, cooking, etc.  I called my doctor and asked her if I needed a higher dose (I had encouraged her to start with the lowest dose available), but she told me to be patient and give it a week or so, that it would build up in my system and become more effective over time.

She was right!  I have had a really good week and a half - so much better than my last two months.  We spent the weekend up in Rochester, visiting my family for the holiday.  Normally, those visits completely wipe me out, and I barely make it through each day.  I did great last week!  I actually enjoyed all the family gatherings for the first time in years because I felt so much better.  And now, back at home, I have been taking walks, lifting weights, cooking, etc.  I LOVE being able to get going in the morning without waiting for my meds to kick in.  I can shower when I first get up!  Woohoo!  And I do think I am sleeping better, too.

I'm not saying beta blockers are a cure-all, but they have really allowed both my son and I to be more active, do more, and enjoy our lives more.  Even better, we have both discovered there is a positive domino effect.  Being able to exercise more improves muscle strength, cardiovascular health, and overall physical condition...which in turns helps us to feel even better and do even more!

A couple of tips to remember if you want to try beta blockers (or, really, any ME/CFS treatment):

• There are dozens of different beta blockers out there, of several different types.  Wikipedia has a long list of uses for beta blockers, with this warning: "Large differences exist in the pharmacology of agents within the class, thus not all beta blockers are used for all indications listed below."  It can take a lot of trial and error to find exactly the right one for you, so DON'T GIVE UP!  If one doesn't work for you or has side effects, try another!
• As with most meds for CFS, it is usually best to start at the lowest possible dose, then go up gradually, if you need more.  With beta blockers in particular, one side effect is fatigue (yes, the exact thing we are trying to reduce!).  So, if you feel worse on beta blockers, then your dose is almost certainly too high.  Try reducing to the lowest dose possible, even cutting tablets in half or quarters if needed, especially if you are one of those people who always overreacts to meds.  If even the lowest dose is too much, try a different beta blocker (see #1).
• Beta blockers are commonly used to treat high blood pressure, so you might be concerned that taking them will lower your already too-low blood pressure.  That hasn't been the case for me nor for my son (we both have NMH as well as POTS) or any others I've spoken with.  In fact, my BP has been steadier on beta blockers, just as my heart rate has, and it has not gotten lower.
• Beta blockers do not actually lower blood pressure, per se.  They work by blocking certain hormones in the body that affect heart rate and blood pressure.  The one I take, propranolol, is a non-selective beta blocker that blocks the action of both epinephrine and norepinephrine; others work differently.  We know that people with ME/CFS have messed-up endocrine systems that don't release the right amounts of hormones at the right times (which contributes to everything from sleep dysfunction to emotional swings to autonomic nervous system dysfunction aka OI).  Anything that helps to control and maintain steady levels of any hormones helps improve our symptoms, in our experience.
• Did I mention...DON'T GIVE UP?  It often takes many trials of many different meds and doses to get the effect of the beta blockers just right, so keep trying.  My doctor was thrilled when I asked her if I could try beta blockers.  She said, "that's an easy one to say yes to," because they have been used safely for decades for many types of conditions (as opposed to some of the new research I sometimes bring her!).

So, that has been our experience.  I wanted to share my excitement with you, of being able to do more and feel better, in the hopes that perhaps it will help you, too.