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Low dose beta blocker for P.O.T.S. is WORKING

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by BEG, May 2, 2010.

  1. urbantravels

    urbantravels disjecta membra

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  2. toddm1960

    toddm1960 Senior Member

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    Anyone that thinks they may have a mitochondrial connetion to their POTS needs to be very careful with beta blockers. The reason you're getting drop to the floor exhaustion is BB have the same affect on CoQ-10 that statins do. They reduce the amount that's available for our mitochondia to use and produce ATP. I'm just like one other poster on here, it was the first drug I was given to try and I couldn't lift my head off the pillow, I was bed bound the whole time I was on it. Beta blockers and statins are on the DO NOT USE list for mitochondrial disease.
  3. Waverunner

    Waverunner Senior Member

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    NOT all BBs inhibit mevalonate. Take a look at Wiki: "The synthesis of an intermediary precursor of coenzyme Q10, mevalonate, is inhibited by some beta blockers, blood pressure-lowering medication"

  4. toddm1960

    toddm1960 Senior Member

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    So how many of you were taking timolol?
  5. urbantravels

    urbantravels disjecta membra

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    "Anyone that thinks they may have a mitochondrial connetion to their POTS needs to be very careful with beta blockers."

    And how will I know this? Will the mitochondria whisper to me to tell me?

    Atelenol is not mentioned in the study cited above.
    Ocean likes this.
  6. Francelle

    Francelle Senior Member

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    Message deleted - errors
  7. Francelle

    Francelle Senior Member

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    "And how will I know this? Will the mitochondria whisper to me to tell me?"

    Sorry to be flippant but that was funny urbantravels!
  8. TinyT

    TinyT Senior Member

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    LOL Its not like any/most docs actually test for mito disease anyway
  9. toddm1960

    toddm1960 Senior Member

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    I'm very surprised at the number of people that haven't pushed for mitochondrial testing, once I had my POTS diagnosis it was the next thing on my list to rule out. I went to MDA.org, found the closest MDA Clinic to me and made an appointment with one of the geneticist there. After going over everything she felt mito testing was warrented. I mention statins and beta blockers because looking back these were all signs I had of mitochondrial problems, but had no idea. So if these two drugs wipe you out, it might be worth talling your doctor and having some testing done.
  10. BEG

    BEG Senior Member

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    "Dr. Italo Biaggioni (Vanderbilt University) described the results of his studies looking at postural orthostatic tachycardia syndrome in CFS. Treatment with salt, intravenous saline and short-acting beta-blockers has been successful in some patients."

    This excerpt is from Jenny Spotila's excellent summary of ME/CFS State of the Knowledge Workshop.

    I cut my beta-blocker into very tiny pieces and take them as needed now. I've cut caffeine considerably and try to stay cool always. I salt load and drink water constantly. My blood pressure runs normal to low. The only intravenous saline I've had is prior to surgery. I think it might be beneficial on a continuing basis. Has anyone tried it?
  11. TinyT

    TinyT Senior Member

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    The only IV saline I've had is when I was in the emergency department for stomach troubles (vomiting, pain & nausea) as I was really dehydrated. It did help me feel better though, especially as the dehydration was causing a POTS flareup.

    I have a few POTS friends (POTS only not ME/CFS) who often pop in to their local emergency department or hospital clinic for IV if they are feeling really really POTSy.

    They said that they get a letter from their GP saying they need IV saline due to their POTS/dysautonomia and apparently it helps to get seen/treated quickly. I think in some places you can also get access to regular home nursing services for IV therapy (this in all in Australia though).
  12. urbantravels

    urbantravels disjecta membra

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    I've found electrolyte drinks to do OK for me. I have no significant hypotension, so re-hydrating doesn't seem as key for me, though I still try to keep up with hydration and electrolytes.


    I've often wondered if a Medic Alert bracelet would be warranted for people with OI. I've never passed out from OI, but I suppose it could happen in a public place (or I could at least get woozy enough to be non-responsive). Would EMTs even know what "POTS" means or what to do about it? I have no other obvious reasons to need a bracelet, like medication allergies.
  13. TinyT

    TinyT Senior Member

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    I've got a few POTS friends (POTS only, not ME/CFS) as well as ones with NMH and other forms of dysautonomia, and this topic has come up a few times. Its tricky to put POTS or dysautonomia on your medi alert bracelet if the docs/ambos have no idea what it is. A medi-alert bracelet is probably a good idea if you are prone to passing out (especially in public).

    Asking your doc might be a good idea about what to put on the bracelet. Some suggestions could include: tachycardia, postural syncope, low blood pressure, seizures, fainting, tremors (if you get bad shakes), cardiac, autonomic dysfunction, labile BP & HR. You could also put check wallet and have a card with more info about your meds, conditions and specialists.

    I dont have one myself as I'm not usually a fainter with my POTS, unless I'm really dehydrated & sick.
  14. urbantravels

    urbantravels disjecta membra

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    Yeah, I actually don't faint. The worst I've gotten in public is somewhat lightheaded and spacey, and a few short spells of vertigo. I suppose I can't really think of a compelling need for a bracelet since I also don't have drug allergies - if I'm ever found unresponsive for some other reason (i.e., hit by a car) there probably isn't anything different they'd need to do for me than for other patients....it's not like I'd be upright anyway :sofa:
  15. ramakentesh

    ramakentesh Senior Member

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    Eucommia bark from TCM contains a long-acting, gentle beta blocker
  16. BEG

    BEG Senior Member

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    New development for me with the beta-blocker. I now get bradycardia (heart rate in the 40's) as well as tachycardia. I had to drop the beta-blocker per my doctor who said that it would cause the low heart rate. My doctor gave me the common heart tests (from Ekg, Holter Monitor, to echocardiogram.) All results were normal except with some bradycardia showing on the Holter.

    I dropped the beta-blocker but still experience low heart rate when I've pushed through a P.O.T.'s episode, stayed upright and finished the physical task before sitting down. Then my heart rate tumbles.

    Are any fellow P.O.T.s sufferers also experiencing bradycardia?
  17. sensing progress

    sensing progress Senior Member

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    That sounds a bit frightening. I experience POTS but had never heard of bradycardia before. Don't think I've had it happen before.
  18. bertiedog

    bertiedog Senior Member

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    I have just read through this interesting thread and wanted to add that I have quite severe POTS but it is more or less controlled by 20 mg Propananol every morning around 10 am and an occasional dose in the afternoon when needed plus because my adrenals are shot and I have to take a replacement dose of Prednisolone every day this affects the salt balance so I also benefit from 1/2 tab Fludrocortisone. These meds virtually stop the horrible high heart rate and other symptoms provided I don't get too hot when it will become a problem or drink tea that is too strong (caffeine),

    It is pretty universal that people with ME/CFS have underfunctioning adrenals and I think this might well play a part in POTS. With the steroid, thyroid meds and low dose beta my blood pressure is perfect but it used to be very low and I used to react to everything in a negative way but that doesn't happen anymore thankfully so for me it is all positive.

    Pam
  19. ramakentesh

    ramakentesh Senior Member

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    Prednisolone would also help if you were suffering from autoimmune mediated POTS through supression of the immune system disregulation.
  20. Questus

    Questus Senior Member

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    Interesting thread.

    Dr. Klimas diagnosed me with POTS last summer, and prescribed Attenol 5.5 twice a day.

    It did lower my heart rate, but my blood pressure which has always been extremely low got lower. When it measured 80 over 40 at a doctors office a few weeks ago I decided to stop the Attenol.

    I feel better off of it, but will ask Dr. K what do try next.

    The most interesting thing she told me about POTS...I asked her why the doctors at Johns Hopkins focused so much on CFS patients who were hyper-mobile. She explained that it was because CFS patients with 'floppy' joints also have floppy veins that don't vasoconstict well. Interesting.

    Is anyone else with POTS hyper-mobile?

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