Thursday, November 29, 2012

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.


Renee said...

Good news for you and Jamie! So glad you found something to help you more.

Jan said...

That is great news. I thought that OI was due to low blood volume, but maybe there are other causes?

Also, I don't believe 'everyone' with CFS/ME has OI, but perhaps a majority do. Anyway, I can imagine how wonderful it feels to be able to act and move like a 'normal' person. :)

Sue Jackson said...

Actually, studies put the number at over 97% so that is pretty much everyone with ME/CFS. It makes sense - endocrine dysfunction is an integral part of the complex CFS disorder, and if we can't control our hormones, then we can't control BP and HR.

And, yes, you are right - low blood volume is another major factor in OI - also part of autonomic nervous system dysfunction and also controlled by hormones in the endocrine system - so it all ties together.


hkd said...

It is wonderful to find something that works for you!!! Hope your positive results yields help for others - wishing you many many more good days! xo hd

Sue Jackson said...

Oh, and beta blockers help increase blood volume directly, too - they cause water retention...which is a desired state for us!

Unknown said...

Its great to know that you managed to find something to help. I'm 18 and have had CFS for three years now, although I haven't been able to find anything to really help. I'm definitely going to be asking my doctor about this soon.

Also, I don't know if you've tried it, quickly going over your blog, it doesn't seem like it. But I've found that I completely crash after eating refined sugar, which might result from OI or from excess insulin. Right now I'm taking cinnamon pills to see if it has any effect.

Sue Jackson said...

Hi, Nathan, and thanks for taking the time to comment!

Treating OI often dramatically improves symptoms, especially in young people like yourself.

And you might be interested in our Facebook group for teens with CFS:

Despite the name, it has members in their early 20's, too. Check it out and click the join button if you want to join - it is a private group where young people can talk about the challenges of living with ME/CFS and ways to help, too.

If your parents are interested, we also have a parents' group on Facebook:


Sue Jackson said...

Welcome to the teen group, Nathan! I forgot to mention that my own 18-year old son is a member, too. Feel free to write a brief post to introduce yourself.

Jan said...

I guess we must be looking at different studies. The consensus I found while looking into this said that "up to 97%" had some form of OI. So in some studies they could've found a much lower number.

Anyway, I'm glad they're helping you. I couldn't tolerate 'em years ago...they gave me disturbing heart palpitations, so am looking into building up my blood in other ways, and in the meantime, using more salt.

KipperCat said...

This is great news. I'm so glad that Jamie is able to have a normal college experience. I keep my blood volume up by taking a lot of electrolytes - magnesium, potassium and sodium. The salt alone didn't do it for me. With sufficient blood volume, I benefit a lot from my beta blocker, which I take before bed. There are still some days or weeks when my heart acts up & I need to rest more, but these episodes aren't nearly as intense as they have been in the past.

Sue Jackson said...

So glad beta blockers are helping you, too! That has been Jamie's experience, too - he still has bad days but they aren't nearly AS bad and they are much rarer. He's taking just 3 classes each semester for right now, which leaves him time to rest when he needs to.

He takes Mg and K (potassium) too - Dr. Rowe recommends potassium supplements for anyone on Florinef, and he takes the Mg malate at bedtime to help with sleep and pain.

Kilaya Ciriello said...

Almost thirteen years ago I contracted CFS and am now writing this comment in hope of helping others by sharing my experience in overcoming it. CFS began, for me, with almost an entire month in bed thinking at first I had a very persistent flu. It was significantly different from past flus in many ways, however. I had feverish nights where I thought I had “sweated” out the flu but when I got up the next day I didn’t feel better. After two weeks I went to a physician and he prescribed an intensive course of antibiotics. I took them but there was no improvement in my condition. After a month at home I had to return to work thinking I would just “tough” it out and the flu would eventually leave on its own. Things continued to be unusual with my condition. I mostly felt chilled to the bone even with a lot of clothing on. I was continually weak and noticed I couldn’t concentrate on what I was doing. There seemed to be a fog in my brain. My nerves were fragile. This was the beginning of my understanding about the “relapse” factor of CFS. If I strained or “pushed” myself my condition got worse the next day. If I pushed myself one day when I was feeling slightly more energetic than the day before I had to “pay” for that exertion over the next weeks as my energy diminished and my conditioned worsened. It might be three weeks or a month later that I might return to that original day of slightly higher energy. The nighttime experience of CFS was also physically and psychologically torturous. On the best of nights I would sleep lightly, getting up barely feeling rested at all. Most of the nights however were punctuated by night sweats. I would sleep no more than two hours and wake up soaked in sweat. I would have to change clothes and sheets in order to get another 2 hours of sleep and do the same thing over again. Most nights I would have to lay out 3 to 4 sets of night clothes and towels to sleep in for one night. Then on top of the very low energy levels, the poor concentration, the frail nervous system, the “relapse” roller coaster and the night sweats there was the digestive problems. Most of what I considered normal foods made me feel worse within an hour after eaten. Almost three years after first contracting CFS I got lucky. I found a book written and published in the UK that was written by a man who had the identical symptoms I had. He had taken it upon himself to find a cure, not just for himself but for others as well. The book was mostly about the failures of different treatments to work but he found something that was so immediately curative that he began to write this book before he had even finished the newly discovered treatment. This man introduced me to the miracle of The Gerson Therapy and recommended it to every CFS sufferer after he had done extensive medical research on its premises and found them sound. I immediately contacted the Gerson Therapy foundation located in San Diego California and started to personally investigate their literature and the medical claims it made. After buying and reading three college level texts on human and molecular biology I was convinced that The Gerson Therapy could work. I saved up money and began the Gerson Therapy in April of 2003. Nine months later I was not only fully cured of CFS but I was restored to the vigorous health I had experienced in my young twenties. Ten years later I can say without exaggeration that my health continues to astonish me. I am still healthier than I ever dreamed possible. The Gerson Therapy not only cured me of CFS but opened up a whole new level of physical and psychological health that I didn’t know existed prior. I only want to share the joy and appreciation of good health that developed in my life after being healed of CFS. Please contact me directly if you have any questions or doubts: Blessings and Health to You! Kilaya

Unknown said...

Thank you so much for your time and patience to share with other CFS sufferers! I have sent you an e-mail message too.

Alisa said...

thanx sue. i take 10 mg propanol in the am and always stay in bed until it takes effect and 5 mg in the pm. i take half in the pm because it seemed to keep me from sleeping. i am curious about using the long acting and wonder when dr rowe began prescribing such high doses. very interesting and i appreciate your time and effort.

Sue Jackson said...

Hi, Alisa -

I am lucky - I'm not one of those with ME/CFS who over-reacts to small doses of medications, so I can normally tolerate normal doses. In fact, I tend to metabolize drugs very quickly so sometimes I need more than most people.

Just to clarify, Dr. Rowe is not my doctor - he only takes on pediatric patients, though we and our doctors have relied on him for years for advice.

60 mg is not actually a high dose for the 24-hour extended release type of propranolol - it is the lowest dose. You have to consider that that amount has to last for a full 24 hours, so spread over that much time, it's actually not very much - about the same as what I was taking before for about 14 hours.

Interesting that it disrupts your sleep - Dr. Rowe advises taking the 24-hour types before bed because he says that some of our night-time waking and light sleep is due to random bouts of tachycardia while we sleep, so many CFS patients feel they sleep better while on beta blockers. I haven't noticed a difference with my sleep, though.


Unknown said...

I just googled and saw that three weeks at the Gerson clinic costs $16500. Then one has to afford the monthly costs of organic products and supplements

Unknown said...

Hi Sue,

How are the beta blockers currently working for you? I just started propranolol but so far am only doing 5 mg at night because I don't know how well i tolerate it yet. I do feel it will be a key in helping, though. I am curious if you are still seeing success.

I'm having a hard time differentiating between the CFS fatigue and the POTS as I have both. I'm pretty sure the POTS is one of the reasons I crash so much if I overdo it, but it's still tricky to know. Prior to beta blockers, were you "crashing" a lot? I am mostly bed-bound. It sounds like your son was also.

Thanks so much! :)


Sue Jackson said...

Hi, Rachel -

Glad to hear you are trying beta blockers. There's really no reason to think of POTS and CFS as separate conditions - Orthostatic Intolerance (including POTS) is an integral part of ME/CFS, so you can't really differentiate between them. Though I completely understand the impulse to analyze - I do that constantly!!

5 mg is a tiny dose of propranolol, so you may not be seeing much effect yet. Though it was smart to start low! Are you taking regular propranolol or the extended release type (that would have ER after the name)? The regular type only lasts 4-6 hours and then wears off, so if you take it at bedtime, it may help reduce HR spikes/tachycardia while you sleep but it will be completely worn off by morning. The ER type - as I explain in this post - you only take once every 24 hours, so if you take it at bedtime, you will wake up ready to go, with a nice low/normal heartrate! As I describe here, I found the ER type much more beneficial.

Again, 5 mg is a tiny dose so you might not be seeing much effect yet - how much does your heartrate decrease after you take it? Mine drops about 30 bpm at the dose I take, which bring me down into a more normal range so that I can be active without going over my AT and crashing.

Oh, and yes, the beta blockers still work great for my son and I - once you find the right one at the right dose, it shouldn't lose effectiveness over time. He and I both take the 24-hr kind at bedtime once a day.

And, yes, they significantly reduced my crashes from exertion. I still have limits. If I am active (walking, etc.), I wear my heart rate monitor and keep my HR below my AT (not too hard to do with the BBs). But I know I still can't go forever. When I am doing well, I can manage up to an hour of exercise/exertion without crashing afterward - far better than I was before BBs.

The BBs won't necessarily make you feel better right away - it's more of a positive domino effect. They bring down your HR, allowing you to be more active. Then, as you are able to do more - walk, light weights, getting out and about, etc. - your physical condition and muscle strength will improve gradually, which will help you to feel better and will further reduce the effects of OI/POTS.

But first, you have to find the best dose for you - one that brings your HR down to normal levels, without any additional fatigue as a side effect. You've done the right thing by starting nice and low - see how much your HR drops on this dose and if it isn't enough, then gradually increase the dose until you find the best one for you - we are all different.

Hope that helps!


Fred said...

Sue I was on atenolol (25mg twice a day), which was great with my HR, but I started getting urticaria, if I slightly scratched/touched myself. I changed to propranolol - (10mg twice a day) - it seems weird but the propranolol seems to be making my heart race and I feel anxious??
I was told we can't get long acting propranolol in Australia.

Sue Jackson said...

That does sound weird, Fred - I would check that out with your doctor. Propranolol, like all beta blockers, should slow down your HR not make it go faster! Strange that you can't get the long-acting type there if you have the short-acting type.

I know this must be frustrating for you, but be patient and persistent. It can take several trials to find exactly the right beta blocker at the right dose for each person - and we are all different. Be sure to try different doses (usually for us, less is better - too much can increase fatigue) and if one (or two!) doesn't work, try another - there are about 3 dozen different ones and some are entirely different types. Good luck & let me know how it goes!


Fred said...

Thanks, Sue. 10mg of propranolol sent my heart rate soaring 40bpm- lying down. The pills are dark red and I wonder if it might be the colouring that is causing the reaction rather than the drug. The main problem is needing to revisit my doctor and the 4 day payback, from the doctor's visit.

Sue Jackson said...

Hmmm...I don't recall them being red pills when I took them. One thing you could check on your own, with the pharmacist, is to make sure they gave you the right pills and/or check to see if there is the same med available from a different manufacturer (that might not contain the dye or whatever is affecting you). I have to do this with certain meds that contain lactose - some manufacturers use lactose while others don't. In any case, the pharmacist is a good person to start with.

Unknown said...

The wrong ones gave me palpitations, the right one (Bisoprolol) helped lower my heart rate and raise my blood pressure to normal. What a difference. No more anxiety or sweaty palms

Sue Jackson said...

Good for you for sticking with until you found the right one! It can take a lot of trial & error for some people, so patience & persistence is REALLY important.

You also bring up an excellent point - many people with ME/CFS are diagnosed with anxiety when it's really OI causing it - treat the OI and the feelings of anxiety disappear!

Glad you found a solution for yourself!

Denise B said...

It's years later, but my daughter had a similar response to 10 mg twice a day of Propranolol. She had more anxiety, emotional issues (like PMS) and more nightmares. She has PTSD, and believes that has to do with it.

Denise B said...

Not sure if anyone reads these replies long after you wrote the post, Sue, but I'll try. I was dx with POTS last year, as was my 33 year old daughter, when we began working with a new ME doc. We did the NASA lean test. My daughter isn't really able to do any treatment, she reacts to many meds. I notice a difference with compression (yoga pants) and increasing salt intake, already drink lots of water. I wonder if a BB would be appropriate and will ask doc next time. She said my HR is low. Though it does increase by the right percentage standing for more than several minutes. I have only had tachardyia one time that I'm aware of, i the night. very rarely during daytime, perhaps for a minute or so when I suddenly used a lot of muscles after lying down. So, perhaps I don't really have POTS. If it's just OI, can BB still help? Another Q, it sounds like your increase in ability to exercise and be active hasn't caused PEM, if you stay in your new limits. I have PEM from mental exertion, not only physical. Or emotional stress. Do you notice you can read longer or have longer conversations with someone on BB too? I'm much more debilitated than you, so not sure I should compare. My ME has progressed steadily over 28 years, particularly the past 15. Thanks, Sue!

Sue Jackson said...

Fred -

I don't know if you'll see this so much later, but I just re-read your question and it hit me that it sounds like you are describing Sudafed aka pseudoephedrine (little red pills), which is a common decongestant sometimes used for OI - but, as you described, it can sometimes increase your heartarte (its effect is to constrict your blood vessels which can be helpful - I sometimes take it - but not everyone can tolerate it. Given that your HR went UP when propranolol and other beta blockers will definitely DECREASE your heartrate, it sounds like the meds might have gotten mixed up.

Sue Jackson said...

Two thoughts on that, Denise -

1- Re-read this blog post about using a long-acting beta blocker instead of the short-acting one (which your daughter took, given the dose and the fact that she took it twice a day) - it is common, as I explain in this post, for the short-acting ones to make things worse because everytime they wear off, your HR goes even higher than it was. And twice a day is not nearly enough to keep it in her system 24/7 - much better off trying the long-acting version of propranolol or some other type that lasts for 24 hours.

2 - As I explain here, there are over 30 different beta blockers on the market (plus some other meds that aren't exactly beta blockers but in similar classes and used to treat OI). Just trying 1 beta blocker at 1 dose is just the beginning! She can try the long-acting propranolol, as I explained above, or try something else entirely, like nadolol or atenolol or something entirely different (there are several different categories within those 30+ types). It can take a lot of trial and error, so you don't want to give up after just trying one. It is SO life-changing, it is worth the time and effort to keep trying. Patience and persistence really pay off!

Sue Jackson said...

Yes, I still see comments even years later - thanks for stopping by and taking the time to comment, Denise.

It is unusual to have a low HR with POTS but since you said it increased while standing and met the POTS criteria, then yes, that is still POTS. I was curious that you didn't mention what your BP did during the standing test...? NMH, where the BP falls while upright, is even more common that POTS and many of us have both. Knowing which conditions you have can help to guide which treatments to try.

Beta blockers might not be best for you, given that your HR is normally low - I would check with your doctor on that one (i.e. HOW low is your resting HR, etc). There are other, newer options, like ivabradine and mestinone, that are used to treat all kinds of OI.

Yes, you understood my statement correctly - I rarely crash from exertion anymore! :) Treating OI CAN improve your ability to socialize for sure because OI affects you while sitting up as well as while standing up - any upright position makes it hard to hold your BP and HR steady. Treating OI is a big part of that, but only one piece. Here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again:

So, my improvements over the past 17 years have been from ALL of those treatments combined, not just treating OI.

From your description of crashes from mental exertion plus how debilitated you are plus that you are getting worse, it is VERY likely that you have some infections behind the scenes. Diagnosing and treating those infections - whether they are tick infections or reactivated viruses or molds or fungal - can greatly improve your condition...and having infections can prevent you from improving no matter what you try. You mentioned that you are seeing an ME specialist - can you ask him or her to test you for the common infection culprits in ME/CFS?

In the meantime, from among all the treatments listed in that post above, you might want to start with inosine. It's an inexpensive supplement that helps to normalize the immune system, thereby helping to improve ALL symptoms, since immune dysfunction is at the heart of our disease. It's explained on that treatment post I linked to above, but here is a direct link to more info:

Sue Jackson said...

Just to be clear, in addition to trying inosine, I would definitely talk to your doctor about treating your OI - those two things have had the biggest positive impact on our lives.

Unknown said...

Hi Sue
Thank you for sharing your experiences with CFS and beta blockers,I started 10mg propranolol for the last few days,feeling very tired,nauseous and dizzy will this eventually settle Thank you in advance

Kind regards


Sue Jackson said...

Hi, Glenda -

10 mg is a very low dose (which is good, that's how you want to start), but it is also the short-acting type of propranolol. As I explain in this post, most of us do better with long-acting beta blockers taken at bedtime (they last 24 hours), rather then the short-acting ones that you just started, which wear off after about 4 hours.

So, my question is whether you are getting these side effects immediately after taking a dose? Or a few hours later, as it is wearing off? Those are common symptoms of OI itself, so the beta blocker should reduce them, not cause them.

If you are getting those side effects within an hour of taking it, then you should try a different beta blocker. There are almost 40 different ones available, and propranolol is just one, so there are lots of options to try. Everyone reacts differently, and it often takes some trial and error to find the right one. Ask you doctor to try nadolol (it's a long-acting one, so take it at bedtime) or perhaps atenolol or metropolol 9again, ask for the long-acting or extended-release ones, at the lowest possible dose). If none of those work for you or all cause side effects, try something different - not one of the ones ending in -olol. Besides beta blockers (though, again, there are about 40 to try and some act in entirely different ways), there are also newer drugs like ivabradine that might help.

Bottom line is that it can sometimes take a lot of persistence and patience to find just the right med and right dose for you, but it is worth the effort!