Wednesday, March 09, 2011

Treating ME/CFS with Beta Blockers

 (NOTE:  I am not a doctor and do not intend to offer medical advice to anyone.  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'm embarrassed by how long I've been promising to write this blog post!  I've only had one day in the  past month when I didn't have at least one kid home sick.  Craig is still in terrible shape, fighting bronchitis and sinus infection; Jamie is back in school but too wiped out afterward to attempt any homework.

Anyway, back to the subject at hand...this post is about treating Orthostatic Intolerance (OI) with beta blockers.  If you aren't sure what OI is or you think you don't have it, you should first go back and read my post on OI and CFS.  Studies show that over 95% of people with ME/CFS have OI, and it causes many of the symptoms we commonly think of as CFS.  Very briefly, OI causes our blood pressure to drop and our pulse rate to go way up when we are upright.  These effects cause us to feel sicker (and some people actually get dizzy or even faint).

So, my story....in early January, I was in bad shape.  The holiday season had really done me in.  Ken had gotten me a heart rate monitor for Christmas (at my request), and I intended to use it to try some short walks, monitoring my heart rate to keep it below my anaerobic threshold to avoid crashes (for more information on how to monitor your heart rate to avoid crashes, check out my past post).  As I explained in that earlier post, I quickly learned that I was constantly over my anaerobic limit (which is 105)!  No wonder I was constantly crashed - just walking up the stairs or showering sent my heart rate soaring.

In the midst of this bad period and new information about how my OI was affecting my life, I was talking to a friend on the phone (she's one of our local CFS moms - her 15-year old daughter has CFS with severe OI - she used to faint multiple times each day!).  So, she told me that their doctor (who is also my doctor) prescribed beta blockers for her daughter and they had helped to bring her heart rate down.  Then, I remembered reading about beta blockers in Dr. Rowe's article on OI (highly recommended reading!), so I made an appointment with my doctor.

Here's what Dr. Rowe says about treating OI with beta blockers:

Type of drug: a beta-blocker
Indications: NMH and POTS
Action: Atenolol 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.
Common side effects: Some individuals complain of headaches or fatigue after atenolol, and others have worse lightheadedness or worse symptoms in general. If these problems arise, we usually stop the medication. Like other beta-blocker drugs, atenolol can lead to constriction of the airways in individuals with a history of asthma. If cough or wheezing develops soon after starting the drug, it may need to be stopped. For those with mild asthma, our impression has been that an inhaled steroid (eg, Pulmicort, Flovent) may allow patients to tolerate the beta-blocker without increased airway reactivity. Atenolol can also cause emotional depression. Atenolol is less likely than other beta-blocker drugs (such as propranolol [Inderal]) to lead to nightmares, confusion, and hallucinations. Atenolol and other beta-blocker drugs can interfere with the body’s ability to correct low blood sugar, so the drug must be used with extreme caution (if at all) in diabetics. The activity of the drug can be decreased when it is used in conjunction with non-steroidal anti-inflammatory drugs such as ibuprofen (Motrin). We recommend that beta- blockers be discontinued 2-3 days before surgery because it can interfere with the action of epinephrine if that drug is needed to treat an allergic reaction during surgery.

I asked my doctor about trying beta blockers, and she said, "That's an easy one to say yes to!" (as opposed to some of the more experimental treatments I have asked her about over the years).  She thought very carefully about which beta blocker to prescribe and chose propranolol because it is short-acting and comes in a low dose.  She said that would give me some flexibility; she told me I could take 1 or 2 tablets up to 3 times a day (they are 20 mg each).

After the doctor appointment, Ken and I went to the grocery store - he came with me because my stamina had been so poor.  I wore my heart rate monitor.  My average heart rate was 109 and at one point, it shot up to 133.  I was badly crashed the next day.

On the way home from the grocery store, we stopped at the drugstore to pick up my new prescription.  I took 2 pills in the car.  Within an hour, my heart rate had dropped 30 points!

Before beta blockers, my heart rate was often in the 90's just sitting on the couch with my feet up, and it would spike up to the 100's just standing or walking into my kitchen.  Taking a shower would send my heart rate up to 130 or higher!  Now, on beta blockers, my heart rate is usually in the low 70's when sitting (sometimes even 60's!), and it stays below my anaerobic threshold when I walk up the stairs or shower.

Now I can grocery shop on my own: I've gone every week since then!  On a recent grocery trip almost two hours long, my average heart rate was only 80, and the maximum heart rate was 97 - no crash afterward!

I can take walks now!  Since starting the beta blockers, I have been walking, trying to gradually increase how long I walk.  I can now go all the way around my neighborhood without my heart rate going over my threshold.  We went on a hike at the local nature center last weekend - 45 minutes and no crash the next day!

I went back to tell my doctor the good news, and she was overjoyed!  Really, she's usually pretty low-key, but she was grinning from ear to ear as I told her that I'm able to be more active now.  Most days, I take 2 pills in the morning, another 1 after lunch, and sometimes another at dinner, depending on how I'm feeling and whether I have anything to do later in the day.  On Saturday, for our Mardi Gras party, I took the full 2 pills 3 times a day.

As excited as I am by my progress, I want to emphasize that beta blockers are far from a cure for CFS.  I still need my nap every afternoon, still get wiped out if I overdo (like the party Saturday night), and am still prone to crashes for other reasons (like being exposed to a virus).   And they haven't increased my energy levels.  BUT, I can now do things I couldn't do before without crashing the next day.  Being able to walk again feels like a miracle to me!  And I hope that being able to exercise a little bit will help over the long term by improving my overall physical condition and stamina.

Common side effects of beta blockers are fatigue and dizziness (my doctor and I laughed over that - exactly the symptoms we are trying to treat!), but I think my doctor's strategy of using the low-dose, short-acting variety has worked for me - I haven't experienced any side effects.

I just heard from another local friend who uses the same doctor that she is going to try beta blockers also.  It's another avenue of treatment - something to ask your doctor about.  I hope my experience helps you.

23 comments:

  1. Yah!! thats great Sue! I tried Atenolol some time ago and it make my OI worse, but perhaps the short acting one you are taking would work ... I have recently started florinef and it is helping, not up to full dose yet so not sure just how good it will be but so far it's promising :)

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  2. thanks for doing this post Sue. I'm about to try a beta blocker also as an adjunct to Florinef. Hopefully it will do the trick!

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  3. Lee Lee -
    That's great news! Florinef usually only works for kids/teens - how wonderful that it is helping you! And from our experience, getting to the right dose makes a huge difference. Both of our sons have taken Florinef for 5 years. Our older son saw no effect at all at lower doses, then reached his dose, and it was like someone had flipped a switch! Florinef is what allows him to be in school. Good luck and let us know what happens!


    David -

    I hope the combination works for you! Treating OI can make a huge difference, as we've seen with our sons.

    Sue

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  4. great post sue! so happy for you and your family. dr lapp has offered me florinef, but said it doesn't usually help so i passed. given lee lee and i are teens (lol) i may revisit it.
    really thinking of trying the beta blockers, but i am so reactionary to meds. i would like to know if you are typically sensitive to meds.
    thanx!

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  5. Elise -

    Like most people with CFS, I usually need lower doses. That's part of why my doctor chose to go with the lowest dose, shortest acting of the beta blockers. The reason she said this was an easy one to say yes to is because beta blockers have been around for many decades and are very common meds, frequently prescribed for high blood pressure (they work both ways). Since they block adrenaline, the most common side effect is fatigue...again, trying the lowest dose, shortest acting helped avoid side effects.

    Sue

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  6. Sue I'm sooooo excited to read your post and see the amazing success you are having with the beta blockers...it's rare with a chronic illness to find something that works so quickly and overwhelmingly well! Congratulations! I hope all continues to go well and that your kiddos feel better soon!

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  7. I'm very happy for you. I can relate to the excitement about increased mobility since I got mine back after starting HRT in the autumn. Just one thing to improve quality of life makes such a big difference. Having a good doc onside is the best! Congratulations :-) :-)

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  8. Hi,
    Thanks to your post, I started noticing my heart rate, and counting it, sitting down at the computer it wasn't ever less than 120. So i bought a heart rate monitor and found that making coffee spiked it to 150 (as did hanging out the laundry).

    I am off to the doctor today to sort this out (well start trying things).

    No doc or even family (who are really supportive and well read on cfs) thought of this and I only spotted it thanks to this post of yours.

    thanks I think it will really make a difference , now i have a measurement of how sick i am. Great something that shows real boundries :).

    I also use a pedometer to try and measure boundries/what causes flares.

    thanks so much.

    Kiwikchat

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  9. Hi, Kiwikchat -

    Thanks so much for taking the time to leave a comment and share your story!

    Yes, what you're describing is very familiar to me (and to everyone else with CFS).

    What you're experiencing with the high heart rate is POTS, a part of OI. if you're not familiar with that, check out this post as well:

    http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html

    Lots of salt and fluids helps.

    Good luck with your doctor and please let us know how it goes!

    Sue

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    1. I have had this since I can remember.

      My blood pressure is on the high side.

      Taking Salt in water or Fludro just made my heart rate increase even more and gave me weird symptoms.

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    2. Todd - You just have a different form of OI than most - there are a small percentage of people with CFS who have POTS with high blood pressure.

      In that case, you are a perfect candidate for beta blockers...in the general population, they are normally used in people with high blood pressure.

      So, if used appropriately (and your doctor can help choose the right one), beta blockers can help to both lower your heart rate AND your BP.

      It can take some trial and error to find the right beta blocker and the right dose (always start low), but it is well worth it!

      Sue

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    3. yeah I am in the same basket as Todd - Ill have to wait a few more days / weeks to avoid the placebo effect (little red pills in a jar from a chemist will do that!) but when I stepped outside to do my daily watering of the plants it felt like it was far less stress to be in the standing position, as if i was indeed burning energy but that this was muscular load, not my heart going crazy.

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  10. Anonymous9:10 PM

    Hi,

    I'm not sure if you'll see this since it's an older post, but I wondered do you take the beta blocker with florinef or just on its own? Thanks.

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    1. I take just beta blockers. Florinef rarely works for adults.

      My younger son takes only Florinef and that leaves him symptom-free about 95% of the time (his CFS is milder).

      And my older son has been on Florinef for 7 years - it helped a lot early on but has become less effective now (he is 18). So he is taking beta blockers AND Florinef for the moment, but he plans to try gradually going off the Florinef because the beta blockers are working so well for him.

      Any CFS treatment requires a LOT of trial and error (and patience!) to find exactly the right meds and dose for you because we are all so different. Even within the category of beta blockers, there are dozens of different types. Always start with a very low dose, but don't get discouraged if the first one you try doesn't work well for you or has side effects - just make sure you have tried the absolute lowest dose (many people with CFS have to cut pills in half) and if it still doesn't work, move onto another beta blocker. It is worth the patience and effort!!

      Hope that helps! Good luck!

      Sue

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  11. Anonymous9:53 PM

    Thanks a lot Sue. I hope my doctor will agree to try different ones if the first try doesn't work. I didn't know adults didn't usually do well on Florinef for POTS. Thank you for the info!

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  12. Hi sue
    I took beta blockers for about 18 months and they successfully bought my tachycardia under control. I still have POTS and notice a high heart rate when fatigued. My heart consultant has twice now recommended a drug to me which he says has had a lot of success with POTs, it's called Ivabradine, I wondered if you've heard of it? It's actually an angina drug and apparently has far less side effects than beta blockers I general. It works on the sinus node which is slightly different to beta blockers I believe.

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    1. I have heard of Ivabradine, but it is not yet available in the United States, so I don't have any personal experience with it. I have heard of lots of patients in Australia taking it. It's supposed to work as well or better than beta blockers with fewer side effects. Certainly worth a try!

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  13. Anonymous11:17 PM

    Beta blocker will make you worse .... just give it a year or two :((

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    1. I've already been on them for more than 2 years and still doing well!

      If you got worse, then you should try a lower dose or a different beta blocker. Just because 1 doesn't work for you, doesn't mean the entire class of meds won't work. There are DOZENS of different types in several different categories - lots and lots of options to try! Also, too high a dose will cause fatigue, so always start with the lowest dose and/or lower the dose if you are having problems.

      It often takes a lot of trial and error to find the right treatments in the right doses for you personally, but it is well worth the effort! Good luck...and keep trying!!

      Best -

      Sue

      Check out this follow-up post I wrote about my own trial and error and switch:

      http://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html

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  14. Anonymous1:07 PM

    Well i have just come off atenolol. I felt fatigued all the time while on them. I feel as if i have just been cured of chronic fatigue syndrome since coming off the drug which i took for over 20 years for hypertension. Funny old world

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    1. Sounds like your dose was too high. Beta blockers DO cause fatigue at higher doses, so people with ME/CFS need to be especially careful to start with the lowest possible dose - sometimes even cutting a pill in half or in quarters. You want a dose that will help to maintain a steady HR and BP without causing fatigue.

      If atenolol at its lowest dose still caused fatigue, then you should try another beta blocker. There are dozens and dozens of them with different actions, so it can take some trial and error to find just the right one and the right dose for you - but it is worth the patience and persistence!

      Sue

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  15. hi! great blog, has really helped me find new treatments to try. wanted to ask , do you take the propranolol at the same time as immunovir? is it ok to do so? and what about the ldn? thanks! Steffan

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    1. Steffan -

      Yes I take beta blockers, Imunovir, and LDN. None of them interact. In fact, in some ways, it is synergistic to take them together. The LDN and Imunovir both help to normalize the immune system, while the beta blockers help to lower my heart rate (as described in this post) to improve OI.

      Sue

      P.S. No need to leave multiple comments - your comment will appear after I approve it (to prevent spam). Thanks for stopping by!

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