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Better, best beta blocker for POTS - mast cells

Discussion in 'Mast Cell Disorders/Mastocytosis' started by soulfeast, Jul 28, 2012.

  1. soulfeast

    soulfeast Senior Member

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    considering mast cell activation might be an issue as well as mito damage. i am reading that especially propranolol and metaprolol inhibit CoQ10-dependent enzymes which can exacerbate mito issues..

    also considering i need to take a binder like charcoal and or csm for biotoxins. finally realized that my tachy crashes while on csm (not for long...) are because toprol xl stays in intestines at least 12 if not 20 hours..

    any thoughts on atenolol and bystolic.. what concerns me about bystolic is that it raises NO levels.

    clonadine???

    i wish there was a natural alternative to getting tachy and adrenaline activity down.

    thank you!!
  2. adreno

    adreno 3% neanderthal

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    Have you considered an angiotensin II antagonist?
  3. voner

    voner Senior Member

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    Adreno,

    What are some angiotensin II antagonist that can be tried for POTS?
  4. adreno

    adreno 3% neanderthal

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    Losartan has been used in at least one study.
  5. soulfeast

    soulfeast Senior Member

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    probably going back on bystolic until I learn more.. ?? I'll ask about the cozaar. Thank you.
  6. Marg

    Marg Senior Member

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    Hi

    Atenolol made me feel terrible, even putting one tablet in water and taking doses with a measured dropped. Dr. Klimas then put me on the Clonadine Patch and it is wonderful, do not even know I am wearing it.
    taniaaust1 likes this.
  7. SOC

    SOC Moderator and Senior Member

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    Atenolol is working okay for me. I've only been on it a couple of weeks, though, so things may change. So far, it seems to be lowering my BP and HR when I'm horizontal, maybe keeping my HR from going really high as easily. However, I'm not seeing much change in my HR during my basic activities like sitting, standing, and brief walking I hoped for more, but I'll wait another couple weeks to see what happens on a longer scale.

    My daughter has had excellent results lowering her HR (by 20-25 bpm) with Florinef (and K-Dur to compensate for potassium loss with Florinef).
  8. xrunner

    xrunner Senior Member

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    The only natural remedy that works similarly to a beta blocker I know of is the herb Stephania root.
    I used it in the past, just 5 drops twice a day, and it surely slowed down my heart rate due to other issues including fatigue/pem. The other benefit I had was that it lifted my fatigue enormously.
    However, I don't know whether it'll work for pots.

    If you want to look up information, search for some of the active constituents such as Tetrandine and Cepharantine.
    It's a very strong herb with some potential side effects, contraindications and drug interactions, in particular beta blockers.

    ps: something that used to work well for me in shutting down adrenaline was Andrographis.
  9. soulfeast

    soulfeast Senior Member

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    Thank you all.. I am reading that mast cells cause dilation and leakage and can contribute to POTS. Also reading on Dr Amy's board about other methylation involved contribbutors.. why is this so complicated! We see a dysautonomia speciaslist at end of month and will ask about clonidine. A patch sounds intriguing.. that would not interfer with binders.

    I had problems with andrographis with itching (i think, or rash) but my daughter did fine on it.. may try that.. thank you.
  10. Marg

    Marg Senior Member

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    I have been using the Clonidine patch for three years. I love it, change it once a week that is it. Do no even know I am wearing it. It is quite small, do not even need the extra cover, sticks fine. It and electolyte drinks and that is it, no problem, not even dizzy bending over any more.
    August59 and taniaaust1 like this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Funny how we all respond to drugs and treatments so differently. I tried Clonidine for about 6 weeks and it really made my version of dysautonomia much worse. I hope it works for you soulfest.

    Sushi
    taniaaust1 likes this.
  12. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Losartan is chosen because it increases NO.

    http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01210430
    Also interestingly:


    Since I am in the minority that tends toward high BP, I might just try lots of C to see how that goes for me in increasing NO.

    Btw, there is also a drug called ivabradine which provides pure rate control, but AFAIK is currently not available in US. Also, CCBs are sometimes used to limit rate.
  13. SOC

    SOC Moderator and Senior Member

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    I said earlier that I'm on atenolol, but I was confused. :redface: My daughter takes atenolol and finds it okay, but not great. She says Florinef +K-Dur work better for her.

    I, on the other hand, am actually taking a calcium channel blocker (CCB). I'm not finding a huge benefit from it yet. Electrolytes and LOTS of extra fluid seem to be doing more for my tachycardia than the CCB.

    My doc said that beta blockers can be dangerous for people with asthma, which is why I was given a CCB instead.
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    alpha adrenergic agonists are a remedy for asthma (expanding airways), so that makes sense - an adrenergic blocker might be the wrong thing, though ones like Toprol are cardioselective while atenolol etc are not

    while on the general subject, the possibility of BBs such as atenolol increasing blood glucose should be mentioned - though using propranolol goes the opposite way and tends toward hypoglycemia, IIRC
  15. Marg

    Marg Senior Member

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    Did you use the patch or take the pill?
  16. Marg

    Marg Senior Member

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    Oh Atenelol made me very sick. I even was told to dilute one pill in water and take it at low measured doses, still felt terrilble. The patch was tried next and it was fine. It must be because it does not go through the liver.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Pill, so it may have worked differently.

    Sushi
  18. CAcfs

    CAcfs Senior Member

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    So...I have been taking Now brand Acai (freeze dried in capsules) and it helps me a lot....the bottle says something along the lines of "modulatory effects on NO" and I was wondering what the heck that means with regards to us.....can anyone explain in 1-2 sentences what's up with NO and CFS? (can't read more than a few sentences). Also bottle says something about supporting heart and blood vessels and I understand why that helps us, since I realize our blood vessels do not pump blood properly. All I know is that I feel a LOT better after I take this stuff, like good enough to get up and do the dishes.

    I am wondering if our NO is too low or too high? Just never had the energy to research it...but saw NO on bottle of something that helps me, so now I"m interested.
  19. CAcfs

    CAcfs Senior Member

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    I mentioned NO because I saw it discussed up above. But in terms of beta blockers, only one I've taken was Pindolol, and I do remember that time in my life being better. I recently read that beta blockers help those with cfs get better quality sleep. So now I'm re-interested.
  20. taniaaust1

    taniaaust1 Senior Member

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    Im going to be asking my specialist about being put onto clonidine too next time I see him (approx 3 weeks time but Im thinking about phoning and bringing the appointment forward as his last appointment suggestion turned out to be bad).

    He's already got me on Florinef (which does help some). and medical support stockings.. . and said he dont like giving his patients betablockers much for POTS, as is own experience with ME/CFS/POTS patients is they dont work well for it. I myself anyway are vary of Betablockers due to a very high probability that I have mast cell disorder so wont be pressing him to trial those anyway.

    To those who are on clonidine due to POTS noradrenaline (or high BP on standing) .. the patches do they just come in one kind of dose? Also anyone on pills of this.. what dose have you been put onto for these issues? (this stuff is above my specialists knowledge..he's about to try to refer me on as he's at loss what further to do for my POTS.. so I will need to be telling him what others are doing).
    soulfeast likes this.

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