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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Better, best beta blocker for POTS - mast cells

soulfeast

Senior Member
Messages
420
Location
Virginia, US
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!!
 

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
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!!

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.
 

SOC

Senior Member
Messages
7,849
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).
 

xrunner

Senior Member
Messages
843
Location
Surrey
i wish there was a natural alternative to getting tachy and adrenaline activity down.

thank you!!

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.
 

soulfeast

Senior Member
Messages
420
Location
Virginia, US
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.
 

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
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.


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.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
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.

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
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
Losartan is chosen because it increases NO.

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01210430
There is a treatment arm with a medication (losartan) that reduces the binding of angiotensin and increases NO

Also interestingly:


A major subset of POTS has increased peripheral resistance and low blood flow(LFP) related to increased angiotensin-II (Ang-II), and decreased nitric oxide (NO). NO deficits are reversed by Ang-II type-1 receptor (AT1R) blockade, ascorbic acid (AA) and tetrahydrobiopterin in skin suggesting the importance of oxidative stress.

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.
 

SOC

Senior Member
Messages
7,849
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.

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.
 

Sherlock

Boswellia for lungs and MC stabllizing
Messages
1,287
Location
k8518704 USA
My doc said that beta blockers can be dangerous for people with asthma, which is why I was given a CCB instead.
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
 

Marg

Senior Member
Messages
343
Location
Wetumpka Alabama
Did you use the patch or take the pill?

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.
 

CAcfs

Senior Member
Messages
178
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.
 

CAcfs

Senior Member
Messages
178
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.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

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).