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beta blockers and heart rate

Discussion in 'General ME/CFS Discussion' started by MeSci, Jan 13, 2016.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Just saw a post by @Sushi about using a beta blocker to lower heartrate so as to tolerate some activity, and I have wanted to look into this for some time.

    I was prescribed a beta blocker in 2014 for hypertension, and ever since then I have wondered how the reduction in heartrate should be treated when trying to estimate my anaerobic threshold. Should the formula to estimate this be adjusted to take account of the beta blocker, or can we assume that the new heartrate can be treated in the usual way in the formula?

    So basically, if the beta blocker means that I appear to be able to tolerate more activity before reaching my maximum permissible heartrate, can I trust this or do I need to adjust the maximum permissible heartrate downwards?

    From experience, I do seem to be tolerating the usual maximum permissible heartrate since starting the beta blocker, but have not been measuring it very often. (I get very little PEM.)

    Also, others have said that the formula is 0.6 times (220-age), but I have queried whether the '0.6' applies to someone whose function is 0.6 of that of a healthy person, so should be adjusted according to our individual activity levels. See this thread for discussion of these.
     
  2. Marco

    Marco Grrrrrrr!

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    Sorry, I can't answer your question and don't want to divert the thread, but I'd be interested to know if you've noticed any changes in symptoms since starting the beta-blocker?
     
  3. jimells

    jimells Senior Member

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    I have found a tiny dose of atenolol (5-10 mg per day) to work very well for controlling hyperadrenergic POTS. It relieves symptoms such as tachycardia, palpitations, near-syncope, high blood pressure, feeling hot, cold and clammy hands and feet. Just before I started the atenolol in November I could barely stand long enough to prepare one cold meal per day, and I had no appetite anyway. Now I am back up to two meals per day and a shower twice a week.

    The POTS was so bad that it was limiting my activity even more than the ME-caused lack of energy. Now I am back to being limited by the lack of energy instead of the POTS.

    Here's a good article on hyperadrenergic POTS:

    http://www.ncbi.nlm.nih.gov/pubmed/21947988
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Not sure, I'm afraid. I had previously been taking an ACE inhibitor, which I had stopped due to a suspected causal involvement in the severe hyponatraemia I had been suffering, but unfortunately I have had another episode of this recently, although I suspect that this one was triggered by a migraine.

    It's so hard to make causal connections, I find. Maybe when I finally get all my health diaries typed up (I'm still on 1996!) I will be able to make a few more...
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Hmmm...I wonder whether the answer to my question will differ depending on the presence, or absence, or even type, of POTS?
     
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  6. jimells

    jimells Senior Member

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    The beta blocker has such an obvious effect on my heart rate that I no longer use it to help guess when I need to lay down to avoid PEM. I just know that if I do anything much beyond minimal activities of daily living, I'm probably going to get PEM.

    I suspect that any medication that affects heart rate will make it difficult to use heart rate monitors to judge maximum activity levels, regardless of POTS or no POTS.
     
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  7. Old Bones

    Old Bones Senior Member

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    @jimells Thanks for the link on hyperadrenergic POTS. Do you know if a person's systolic blood pressure has to increase by more than 10 mm Hg every day in order to be classified as hyperadrenergic? My heart rate always increases enough in the first 10 minutes to be diagnosed with POTS (sometimes up to 50 bpm). But, my systolic pressure is variable -- sometimes a decrease after standing, sometimes a slight increase, and sometimes an increase of more than 25 within the first couple of minutes.
     
  8. jimells

    jimells Senior Member

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    Probably not. In general, doctors don't appear to worry much about those kind of details when making a diagnosis. Most of them seem to work off-the-cuff or on intuition or something - I've never seen a physician use a checklist, for example. Few doctors know about POTS, and even fewer know about the hyperadrenergic kind.

    I found out about this hyperadrenergic stuff this fall when my POTS got so bad that my symptoms resembled what I learned in First Aid class is call "shock": slow speech and cognition, extreme weakness, cold and clammy hands and feet, tachycardia. I had all the symptoms except loss of blood from an injury, and most POTS patients have hypovolemia.

    The key is noradrenaline (aka norepinephrine) goes high and causes all these symptoms of shock, and more, by stimulating the adrenergic receptors. It's fascinating to read about all the stuff affected by adrenaline/noradrenaline - it can even cause constipation!

    https://en.wikipedia.org/wiki/Adrenergic_receptor
    And that's just the beta receptors - there's another list for the alpha receptors.
     
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  9. Sushi

    Sushi Moderation Resource Albuquerque

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    Though I use a beta blocker before a pilates class and it prevents the heart rate spikes that make exercise impossible, I don't use "the formula" when watching my HR monitor--I go by how I feel. So far this has worked in preventing PEM. The way I am seeing it, using the beta blocker only affects the HR spikes, not the HR level that I tolerate.
     
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Would you be able to give a bit more detail? E.g. if you previously tolerated a maximum of 100 bpm, can you still tolerate this? How would you define a spike?
     
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    The HR I tolerate is still the same. It's just that the beta blocker keeps me under this rate unless we get into something really aerobic. So basically my HR tolerance is the same--the beta blocker just prevents me from say getting an HR of 120 with mild exertion.
     
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I have wondered whether perhaps, by causing a little more fatigue, even low doses of beta blockers might reduce our activity a little, and thus prevent our over-exerting ourselves? Or the calming effect might also reduce activity? We might have less 'false' energy caused by adrenaline or nordrenaline, so are just using 'healthy' energy - the energy we have in the bank - so not going overdrawn!
     
  13. jimells

    jimells Senior Member

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    My impression is that the beta blockers actually slow down metabolism, especially compared to a hyperadrenergic state, so that would tend to reduce "energy consumption", and thereby leave a bit more in the "energy bank".
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I have been on a beta blocker since I first became ill in Jan 2013 (now three years.) I had mono/EBV ten months prior to that but recovered and then got a second infection in Jan 2013. This second infection led to extreme tachycardia in the 160's and 170's in my sleep and then POTS. I was put on Metoprolol and then switched to Atenolol which are both cardio selective beta blockers.

    It works extremely well in controlling the tachy and my resting HR is usually in the upper 50's to upper 60's. I take a low dose of Atenolol (1/2 pill which is 12.5 mg AM and 12.5 mg PM) and have never had to increase it beyond this. When I try to taper off of it though even by just 1/4 pill, the tachy returns within 1-2 days at very high heart rates (160 bpm etc) and is unbearable.

    In general I sleep well and do not have fatigue or low energy. However, I have extreme shortness of breath (dyspnea) when I stand which prevents me from walking. My heart rate does not change my ability to breathe when I stand and walk, however, when my HR is in the 160's it is unbearable and my quality of life is even worse than it is now.

    I would love to come off the BB and worry that it could be making my breathing worse (in case the tachy is compensatory) and BB's are not great for people with MCAS (they can degranulate mast cells) but that part is not relevant to everyone.

    I tried a calcium channel blocker one pill about 2 yrs ago and it dropped my BP disastrously low and caused me to throw up and I almost fainted. So, my cardio at the time then felt that CCB were not an option for me and put me back on the BB.

    I have very low BP, and take Midodrine for this, so BB are also not ideal for this reason b/c they can lower my BP even more. I wish the Midodrine alone controlled the tachy but it does not in my case.

    The only other option I know of, which is new to the United States, is Ivabradine and I plan to speak to my cardio about this at my appt in two weeks. However, am about to travel seven hours in Feb to see an autonomic specialist and don't want to mess with my meds prior to that trip in case he has other ideas that my cardio may not be aware of. Ivabradine also has no generic in the U.S. and contains artificial food dyes which pretty much rules it out for me.

    Not sure if any of this helps?!!!
     
    Last edited: Jan 13, 2016
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  15. Old Bones

    Old Bones Senior Member

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    @Gingergrrl Yes, your post was very helpful -- thanks. I can't imagine how awful it would be to have a heart rate as high as in the 160's and 170's while sleeping. The worst mine has been at night (recorded by a pulse oxymeter) was in the 140's. Recently, my "in bed" maximum has been in the 90's -- that was bad enough.

    If I'm really diligent with my pacing, if nothing interesting is happening in my life, (and if the stars and the moon align properly!), my resting heart rate is in the high 50's/low 60's, even without a beta blocker. So, I'd be concerned about it going too low on medication. At times, it seems I need the high heart rate to be functional. At other times, I feel exhausted and out of breath at the same heart rate. So, I'm really variable.

    Your comment about BB's and MCAS was especially helpful. Although I haven't been diagnosed by a specialist, I have 39/58 symptoms on a MCAS checklist, and my reactions to the triggers, food and other, are consistent and quite severe.

    I sincerely hope your appointment with the autonomic specialist next month provides some answers. There is a new POTS clinic in my city. With an undisputed ME diagnosis, I hesitate asking for a referral until I know they are aware of this complication.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    @Old Bones Thanks and am glad it was helpful. Yes, the super high tachy was unbearable and was the first sign that anything was really wrong back in Jan 2013. My highest HR captured was 177 bpm in my sleep. It would wake me up every time and at first it was a few times per week and then it was happening multiple times per night and often took days to recover from it.

    I saw a cardio and we captured multiple episodes on a Zio Patch (like a holter monitor but better) and it was all in sinus rhythm and I was diagnosed with IST (inappropriate sinus tachycardia.) That cardio said that she had seen IST in females in their 30's & 40's who had mono/EBV the prior year (which was me!) and that it should resolve in 6-12 months and put me on a BB. I continued to work full-time until the end of Feb 2014 (another full year) while taking the BB and believing it would completely resolve but it didn't.

    Unfortunately during that period, the tachy shifted over to POTS and instead of happening in my sleep, it happened with positional changes. I would stand up from a chair and my HR would jump up to 120 or 140. My blood pressure would drop really low (80's/50's) and I noticed that my breathing was getting worse. First I could no longer walk a few flights of stairs and it just kept getting worse until Oct 2014 when I got a wheelchair for longer distances. Now I use the wheelchair inside the home, cannot climb a single stair, and my shortness of breath occurs any time I stand/walk even when my HR is perfect (on the BB.)

    I no longer see that cardio (even though I liked her as a person) b/c she failed to tell me that I had ischemia on a treadmill test b/c she decided it was a "false positive." She told me my issues were autonomic and the severity was outside of her expertise so she referred me to my current cardio (who is not great but is more knowledgeable than her IMO.)

    Pacing doesn't help me and I will explain why. I have no shortness of breath when I am lying flat. I could rest in bed for an hour or I could rest in bed for weeks/months but the moment I stand, the dyspnea is immediate. I can usually walk from bed to bathroom (my legs are fine) but if I push it much further, I get extreme shortness of breath and chest pain. It feels like a belt is tightening around my chest and back. The only thing to regain my normal breathing is to lie flat again.

    If the episode was minor, I can regain breathing in the supine position fairly quick, but in a bad episode, it can take hours. I have no delayed PEM and my autonomic and breathing issues are immediate and severe. I do not have a motorized wheelchair but this is where it is headed. If I am home alone and need something in another room, I either skip it or face the consequences which are severe. I cannot walk to the elevator of our bldg let alone to the lobby or garage and completely dependent on being pushed in wheelchair to leave the home.

    My HR is only in the upper 50's to upper 60's with the BB and without it would be in the 70's or 80's so I have never had it drop too low. On a 15 minute TTT my BP very quickly dropped to the 70's/40's but in a regular day it does not drop that low. With Midodrine it now stays in the 90's/60's and my breathing gets a slight improvement so I know there is an autonomic component. Several docs think the Midodrine is bringing more blood perfusion to my lungs and heart when I stand and I agree with this.

    The confounding variable is that I have failed four PFT/spirometry tests which show a "restrictive pulmonary physiology." A lung cat scan ruled out any intrinsic lung issue so this means that the restriction is caused by something "extra-pulmonary" like diaphragm weakness or 5-6 other potential causes. This is what I am currently trying to solve and I am laser focused on this issue b/c if I could breathe enough to stand and walk, I actually feel normal. But I am so impaired by the breathing issue that I am completely dependent on family for help.

    The pulmonologist described my lungs as passengers on a train and even though the passengers are healthy, if the train is broken, the passengers are not going anywhere. He also described a lung restriction as feeling as if a tight belt is around your chest and this is what I feel every time I stand up but never when I lie flat.

    Am glad this was helpful and MCAS had been the other thorn in my side since March/April of 2015. I also looked at the Masto society check list and matched on like 30 of 50 symptoms like you including things like life-long allergy to aspirin, allergy to food dyes, severe period cramps, unexplained bruises, histamine surges, and things you would never think of. BB's are on the absolute "no" list but all my docs including my MCAS specialist who is phenomenal does not have an alternative for me. My MCAS is now better than I ever dreamed of (while still on the BB) but I don't know if this is a temporary reprieve or permanent.

    Thank you so much and I will keep sharing the details hoping it will help someone else. I thought I had an undisputed ME diagnosis as well but now am not as sure. The autonomic docs I have seen were both cardios but the one I am seeing in Feb is a neurologist and am hoping he will look at my total picture with a fresh set of eyes.
     
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  17. jimells

    jimells Senior Member

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    Without the atenolol, my baseline heart rate is 60. With the atenolol, it drops to maybe mid-50s. For me the key seems to be dosage and timing. I take 1/4 of a 25 mg tablet when I get up, and then 1/4 tablet later in the day if I start feeling hot or if I'm going to do an activity like run the plow truck up and down the driveway a few times (the only driving I do anymore). I know I've taken more than I need when I feel cold all over.

    I have found that I get a (somewhat) better response from the medical machine if I can talk about POTS and not mention ME. There is some effort to promote POTS as psychosomatic (Mayo Clinic) but most doctors I've run into are willing to consider it to be a "real" illness.
     
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  18. jimells

    jimells Senior Member

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    :(
    It's rather frightening to me to think that a person can have such an acute, observable problem and the doctors have no idea what is wrong or how to treat it.
     
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  19. Old Bones

    Old Bones Senior Member

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    @jimells Based on your experience, perhaps I'm more concerned than I should be that beta blockers would lower my resting heart rate too much -- that instead, they would stabilize it and take out the peaks.

    I wonder how I'd be able to protect myself from a severe exercise-induced crash based on the write-up about our city's POTS clinic. It describes POTS as a "debilitating heart condition". The main treatments listed are dietary advice and a "supervised exercise training program" held at a cardiac rehab facility. Sounds rather like GET to me. If I were required to provide a reason for declining the exercise component, and their knowledge of ME is based on the PACE study, I'd no doubt be labelled non-compliant. I've been yelled at many times by various medical practitioners when their guaranteed intervention not only didn't help, but made me worse. I hesitate to potentially place myself in this position again. I may reconsider, however, if my intent to be more disciplined in pacing using a heart rate monitor isn't doable, or doesn't achieve the hoped-for results.

    Thanks for your response.
     
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  20. jimells

    jimells Senior Member

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    It's really helpful that we can easily monitor our own pulse and BP without needing blood tests, etc. If a person starts with a small dose, they can easily stop if it doesn't help. The first beta blocker I tried was propanolol, but I'm allergic to that - it made me itch all over. Fortunately it's pretty easy to get BP pills from doctors - they are always anxious to give blood pressure and cholesterol pills to everyone in the world, it seems like.

    Sounds like a horror show for sure. Is the dietary advice to take more salt and liquids, or the generic "Eat Right, Exercise More, Don't Smoke" advice that is the magic cure-all for most everything?

    I've never had treatment from a POTS or autonomic specialist. A Family Nurse Practitioner agreed that I have POTS and prescribed Florinef. Unfortunately her clinic is a 70 mile round trip, which too far for me to travel anymore.

    My current GP says my illness is "mostly psychological" - I suspect the only reason she renewed my Forinef prescription is that doctors are reluctant to discontinue medication prescribed by other doctors - except evil pain pills, of course.
     
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