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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. Patrick*

    Patrick* Formerly PWCalvin

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    I've been experimenting with Atenolol for tachycardia and it seems to work well for the first 6 or 7 hours after I've taken it. Then I seem to fall off into this extreme malaise (worse than my normal ME/CFS fatigue) for a couple of hours. I wonder if that could be due to interference with CoQ10-dependent enyzmes, as with propranolol and metaprolol?
    sensing progress likes this.
  2. xks201

    xks201 Senior Member

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    honestly i get more tired of beta blockers.
  3. Tammy

    Tammy Senior Member

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    A natural equivalant to a prescription beta-blocker would be Motherwort. The only reason I know this is because my daughter has Graves disease and she is working with an alternative Dr. who recovered from Graves "the natural way" and Motherwort is the herb that he recommends for fast pulse rate. It has definitely helped my daughter with that symptom. She does however now and then pop a beta blocker if needed...........but now she rarely needs it. She gets medi herb Motherwort 1:2 from standard process.
    I have no idea if there would be any contraindications having CFS/POTS.
  4. Questus

    Questus Senior Member

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    Has anyone tried low dose metroprolol for POTS? A cardiologist is putting me on 12.5 mg twice a day, and then wants to another TTT on the beta blocker. (That's a new one for me, doing a TTT on a bb.) Not sure why he's going to another TTT on the bb, but said he's going to add a drug during the TTT. I had read about this before, but can't think straight right now to remember why that is. Think it's to determine if this is a specific subset of POTS?

    This is the second bb I will have tried. Dr. Klimas gave me Atenolol, 12.5 mg 2x a day, and it caused very low BP, 80 over 40.

    Feel VERY fortunate to have found a cardiologist who understands POTS as well as other forms of dysautonomia. He's an Internist as well, but only practices cardiology.

    Just wondering what experience anyone has had with metroprolol, and any ideas why he's going to do another TTT on the beta blocker with something added...It wasn't nitroglicerin but something else.

    I'll ask him when I see him again, but am curious. I had a horrible night before I saw him with constant vomiting from POTS, and up most of the night, so am very vague about the visit.
    taniaaust1 likes this.
  5. xks201

    xks201 Senior Member

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    Carvedilol is the only beta blocker that does anything for me. I have tried bisprolol and atenolol. Atenolol did absolutely nothing and bisprolol just made me tired. So did nebivolol. Have not really tried the others. I think just blocking beta receptors and not alpha receptors in this disease can be ineffective depending on what is going wrong/the gene mutations.

    Almost every hormone I take induces high blood pressure so carvedilol is a must for me at low dose 2x/day. If I took it without florinef it would just do the opposite and make me bed ridden most likely.
  6. Questus

    Questus Senior Member

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    Thanks xks201, I don't know anything about carvedilol, buy I'll research it for sure. Do you have the opposite problem I have? BB's increase you BP?

    So you're taking a combination of carvedilol and florinef?

    Think many of us need to try a 'low dose' of many drugs. Too much of any drug has an opposite effect for me.

    Thanks for the info!

    Bright Blessings...
  7. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Thought I'd do an update here for those following this thread.

    The specialist did agree to allow me to trial clonidine.. So Ive been trialing Clonidine for a while now at quarter of a 100 microgram pill (so 25 micrograms per day). Just after I started it (day 2) I had a freak out thinking I was going to end up in hospital as when I took my BP when standing it was extremely low (it was at my normal low laying level 80/60 somewhere around there but on standing) and I'd just taken another dose so thought it was about to go much lower.. turns out thou it wasnt an issue.
    It couldnt have dropped my already low laying levels much further or I would of noticed issues there so seems to just be affecting my higher standing BP (and hopefully stopping the high BP spikes I get at times). So yes I do think this seems to be working to balance my BP.

    The issue thou with it is .. thou it seems to be helping to balance my BP.. it hasnt helped my POTS any further and when I do poor mans test.. POTS is still showing up. This sucks.. I dont know what to do next about my POTS (Im worried about trialing better blockers due to mast cell issues being in my family and a strong chance I also have mast cell issues). Due to that I think Im going to start pushing again for doctors to allow me to trial saline IVs and use the new ME international primer to back up my case of trialing that. After 4 years of trying to sort out the POTS, Im competely feed up by it and sick of being basically housebound due to it. I dont feel like I have any more patience to keep trialing meds after trying to deal with it for so long.
    Questus likes this.
  8. xks201

    xks201 Senior Member

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    Honestly guys I am sorry for constantly changing my mind but I am in the midst of this battle with you all. I am not completely cured yet, though I have a good idea of what is going on in my specific case.

    I had to stop the carvedilol. It was giving me frequent urination. I was waking up 2-3x a night and peeing a lot. And that the main factor giving me CFS...my partial diabetes insipidus (which I had before taking that drug). I have noticed that some of the other beta blockers I think are doing this too, if not all of them. So beta blockers in someone with suspected hypovolemia (which probably accounts for a lot of orthostatic intolerance patients) may not be the best bet. I have seen studies where 25mg of atenolol was supposedly helpful in OI patients. I think clonidine at a low dose of say .5mg twice per day could be most helpful as long as the hypovolemia if there is any is being addressed as well.

    The way I see the heart/nervous system function is like... (and excuse me if I am over simplifying this but it is the best I can do for now), Adrenaline is going to compensate for lack of fluid volume. More fluid volume means the heart has to work less to a degree (until of course fluid volume is too much). So by blocking the actions of adrenaline on the heart with a beta blocker it might not help if you are hypovolemic since there is a reason your adrenaline is raising rapidly like that due to the low blood volume it is compensating for.

    Salt will lower adrenaline too. So if you have low aldosterone and low BP you most likely need florinef and that could take care of the need for a beta blocker. If you have partial D.I. (of which I do not know how to test for since the water deprivation test has been inaccurate everytime I have had it as well as others), then you may just need desmopressin. If you have some sort of genetic mutation in your norepinephrine transporter, which I guess maybe a site like 23andme.com or some university like Vanderbilt which specializes in orthostatic problems could test for, they have drugs for that too. If you have low progesterone that could be a problem because progesterone can bind to cortisol and aldosterone receptors to make up for lack of those hormones. Progesterone will lower adrenaline also. You must treat a low progesterone level if you have one.
    ahimsa likes this.
  9. xks201

    xks201 Senior Member

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    The half life of atenolol is 6-7 hours. This could explain why it is wearing off around that time. Most people who take atenolol take it twice a day at 25mg 2x per day. Do you get frequent urination on it?
  10. Patrick*

    Patrick* Formerly PWCalvin

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    Urination was normal.
  11. Questus

    Questus Senior Member

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    I read an interesting article about beta blockers by Dr. Grubb. Different bb's for different forms of POTS.

    Interesting, because xks201 mentioned frequent urination. More frequent urination when standing is a symptom of HyperAdrenergic POTS. Here is a blog that talks about which drugs Dr. Grubb says help as well as drugs that don't help HyperAdrenergic POTS. http://www.potsrecovery.com/2010/05/what-is-hyperadrenergic-pots.html

    Here's another article by Dr. Grubb that gives a list of drugs that can worsen OI and another list of Therapeutic Options for POTS. Both of these lists are in the middle of the article and in a box. You need to click on 'view this table' to see the lists.

    I recognize that many people here have OI, (not just POTS) as well as other forms of dysautonomia, so this article speaks to both POTS and OI.

    http://circ.ahajournals.org/content/117/21/2814.full

    Bright Blessings..
    hystericalwoman likes this.

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