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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
Res Commun Chem Pathol Pharmacol. 1977 May;17(1):157-64.
Bioenergetics in clinical medicine XV. Inhibition of coenzyme Q10-enzymes by clinically used adrenergic blockers of beta-receptors.
Adrenergic blockers for beta-receptors were studied for inhibition of mitochrondrial CoQ10-enzymes. These enzymes are indispensable for the bioenegetics of the myocardium. Propranolol is frequently used to treat hypertension; in some patients, it depresses myocardial function as an adverse reaction. This side effect may be related to the inhibition by propranolol of CoQ10-enzymes of the myocardium. Timolol showed negligible inhibition of the CoQ10-enzyme, NADH-oxidase. Metoprolol was less inhibitory than propranolol. Five alprenolols showed inhibition which approached that of propranolol. The 1-isomer of alprenolol showed weak inhibition of another CoQ10-enzyme, succinoxidase, but the other beta-blockers were essentially non-inhibitory to this enzyme. The drug of choice is timolol, based on negligible inhibition of these bioenergetic enzymes of the heart, which correlates with its pharmacologically low cardiac depressant effects.
PMID:17892[PubMed - indexed for MEDLINE]
"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.
"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?
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.