The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Cardiologist and Beta Blockers

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Mya Symons, Jun 4, 2016.

  1. Mya Symons

    Mya Symons Mya Symons

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    My cardiologist offered to prescribe me a beta blocker. She did not explain herself well. I am wondering if you all can tell me about your experience with Beta Blockers. Do they work and what beta blocker works best?

    I am having a hard time accepting her offer. Truthfully, I think it is because I would like to remain in denial for as long as possible.
     
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  2. voner

    voner Senior Member

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    Mya, why is the beta blocker being prescribed? POTS?
     
  3. Mya Symons

    Mya Symons Mya Symons

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    Yes.
     
  4. erin

    erin Senior Member

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    I am on beta blockers since 2012. I tried everything not to take them. In the end I gave in and I feel much better. Beta blocker is the only prescribed mainstream medicine I take together with B12 injections. I don't know what to do without Beta blockers. I never had any side effects as yet. I'd like to come off them one day if possible. But they seriously stopped my scary palpitations at night,used to wake me up violently.
    Good luck with whatever the decision you make. It is hard to decide.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    What are you taking? Are you high- or low-blood-pressured?
     
  6. Old Bones

    Old Bones Senior Member

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    @Mya Symons I, too, resisted the prescribing of beta blockers for POTS -- not by a cardiologist, but by my GP. I finally gave in about a month ago, with mixed results. Yes, they do work to lower and stabilize HR. Without the beta blocker, I was usually able to do nothing upright below my target HR (105 - 110 bpm), and I met the criteria for POTS most days. My HR for gentle activities of daily living (food prep, getting dressed, personal hygiene) often reached the high 120's to low 140's, and up to the 150's for even sedentary activities (talking on phone) if there was an emotional content to the discussion. On beta blockers, my HR has not exceeded the mid-120's, and is frequently much lower -- as low as 52 while seated, and in the 40's sometimes while sleeping. On the medication, I've yet to reach the 30 bpm increase from supine to standing required for a POTS diagnosis, which I previously did in the first minute. I also don't hear/feel my heart pounding anymore. So, it seems my heart is being protected.

    But . . . and it's a big BUT, I feel worse. Fortunately, I'm not as cold as I was during the first three weeks on Bisoprolol (1.25 mg at night), and my hands and feet are no longer going numb. Only time will tell if this is due to warmer temperatures, or if my body is becoming accustomed to the medication. Unfortunately, my other increased symptoms are not resolving. I feel more fatigued and drugged, with a "thick" head, and I'm napping longer. I'm having more difficulty focusing my eyes, and they feel weird (no way to explain it -- congested, perhaps), and have regained the "glassy" look they had during my early years with ME. My cognitive problems have worsened. And, it seems more difficult to hold my body upright, whether sitting or standing, not to mention increased back pain. At my next doctor's appointment, I intend to raise the possibility of decreasing the dose to see if I can achieve most of the benefit without the adverse effects. But, I'm already splitting a 5 mg tablet in four (the lowest dose available at my pharmacy), and can't split it any more.

    It seems people respond differently to various types of this medication, so there's no way to know which beta blocker might be most suitable for you. I hope the above helps, although it's likely to make you even more hesitant to try the medication. Good luck with your decision.
     
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  7. erin

    erin Senior Member

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    metoprolol succinate 50mg. I don't have a blood pressure issue, my problem is tachycardia only. Used to wake me up very violently 2 times a night. Then it was 3 times. Now I don't have this problem anymore since beta blocker use. It took a month or two to take it course. I tried to take the half dose at first. Didn't work, still had the palpitations. I was so miserable I had to take the whole 50 mg tablet and it worked for me eventually.

    I also first started to take it after breakfast, this was ok at first. But then I had a mini scary palpitation on the waking up, in the morning. I got back to the cardio dr, he advised me to take it before breakfast, kind of on the waking up time. It did the trick.

    The other thing is I don't drink alcohol ever since beta blocker use. Two of them does not agree with each other.
     
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  8. Kati

    Kati Patient in training

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    Dr Klimas started me on low dose of Atenolol, which is 12.5 mg twice a day about 1.5 years into my illness. I am so ever thankful she did. It helped me tremendously. Recently a local cardiologist added Midodrine which helps a bit but not too much. Higher doses are not possible due to undesirable side effects. My Atenolol dosage has also gone up to 25 mg twice a day which is now a standard dosage.
     
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  9. panckage

    panckage Senior Member

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    Most people I have read about have had positive results with beta blockers. The one side effect i can remember is it diminishes sex drive
     
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I started getting adverse effects after about 2 years from Nebivolol, I think, and it never reduced my systolic pressure enough without causing adverse effects.

    Recently I tried Bisoprolol for 6 days - ghastly. It's no good for me if it takes a few weeks to start working properly and has bad effects in-between, as I have to go shopping!
     
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  11. bertiedog

    bertiedog Senior Member

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    I have been on low dose propananol for probably 20 years or more starting at only 10 mg x 2 but for many years in order to control the POTS symptoms it's 20 mg. I don't have any side effects, it's always helped me to feel better. Many days I only take one dose but if hot weather I need another dose.

    In the summer I do have to add half a tablet of Fludrocortisone too and now I can walk an average of 9000 steps daily whereas without the Fludro and Propananol at times I couldn't even sit upright without severe symptoms. It's been really great for me.

    Pam
     
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  12. Old Bones

    Old Bones Senior Member

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    Hi @MeSci Sorry to hear of your bad experience with Bisoprolol. It seems you're not alone in finding it ghastly, based on on-line reports by patients. Do you mind telling me what dose you were taking? Did you find an effective alternative without the side effects?
     
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  13. ryan31337

    ryan31337 Senior Member

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    Low dose Bisoprolol 1.25mg twice a day here. Side effects were strong at first, very groggy and spaced out for 2-3 hours after taking each day, breathlessness, mild chest pain, mild tinnitus throughout - wasn't good to take directly before bed either. Thankfully these side effects went away after a couple of months.

    I feel like they have been helpful and would definitely be worth a try but personally think treating apparent hypovolemia made a bigger impact for me.
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I was taking just 1.25 mg. I haven't found an alternative. I was using perindopril before Nebivolol, and had severe hyponatraemia which caused physical damage to teeth and bones. (I was taking desmopressin as well, for polyuria.)
     
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  15. Mya Symons

    Mya Symons Mya Symons

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    Thank you for the responses. I also have pretty severe tachycardia. The cardiologist said my heart isn't resting long enough to get adequate oxygen everywhere it needs to be. When I stand up, the blood pressure drops and the heart races even faster. However, the tachycardia is now all the time. It's just worst when it is hot out or when I am standing.

    I guess the best thing to do is to just try a beta blocker to see what happens. If things get worse, I can always go off.
     
  16. Mya Symons

    Mya Symons Mya Symons

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    I have a question on this. Do most Beta Blockers cause hyponatraemia or is it just that one?
     
  17. Mya Symons

    Mya Symons Mya Symons

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    What is the treatment for hypovolemia?
     
  18. ryan31337

    ryan31337 Senior Member

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    Hi @Mya Symons,

    You can start with higher fluid intake combined with salt/electrolytes, if that doesn't help there are several drugs to boost volume, fludrocortisone and desmopressin are commonly suggested. If its really bad there's also IV saline for short boost.
     
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  19. Rrrr

    Rrrr Senior Member

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    i've found low dose atenolol very useful for the last 25 years -- and when i go off it, i'm worse. i take about 7 mg once a day, down from 12.5 mg twice a day. i think i need to up it again to 7 mg twice a day. i strongly recommend it at a low dose. for me. :) but if i take a higher dose, my heart pounds. so...
     
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  20. Luther Blissett

    Luther Blissett Senior Member

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    20mg Propranalol here, with optional 20mg later if needed/wanted which is very rare. They are gastro resistant modified release ?

    No observable side effects for me.

    @Mya Symons , If you go to http://rxisk.org/drugs-a-z/ you can put in a drugs name and find out the common side effects reported, if it helps you make a decision.
     
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