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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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HIGH BP

Jimbo39

Senior Member
Messages
405
Location
San Deigo, CA
I'd be interested to hear how you get on with your home monitoring, specifically how you feel if you have periods of 'healthy' blood pressure. My normal is similar to you (135/80) but on occasion when it drops to healthy levels (110/60) I feel terrible with very noticeable orthostatic hypotension - general fogginess & immediately dizzy upon standing etc. So perhaps not a

My BP is only normal in the mornings or after a moderate exercise. Never 110. In the afternoons, it's usually in the 140-150 range. I think I need to get on meds until I stumble on someway to lower it naturally.

Do you have suspicion of mast cell activation

I do. I usually have a histamine reaction when I eat the smallest amount of food that sets it off. I've read that mast cells can become hyperactive in which they'll react to the smallest stimuli. I started taking Quercetin which is supposed to calm mast cells.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Have you been evaluated for POTS @Jimbo39?

I think I need to get on meds until I stumble on someway to lower it naturally.
I'd caution against allowing a run of the mill Cardiologist treat your high BP at this stage. If you have POTS, especially with hyperadrenergic tendencies, and MCAS, your treatment will be quite different to a standard hypertension patient. These conditions overlap and drive each other. You might find beta blockers for example make everything worse.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
If it remains persistent and fairly constant I wouldn't hesitate to try anti-hypertensives; hypertension is serious. The ACE inhibitors, or alternatively the angiotensin receptor antagonists (in Australia the latter are only available on our pharmaceutical benefits scheme if the former are ineffective or not tolerated) are pretty clean drugs - well targeted with few side-effects.

On the drug issue, I find a low dose beta blocker is invaluable in controlling tachycardia.
Just want to point out a possible serious side-effect from ACE inhibitors (seriously low blood pressure) that they are aware of in Scotland and which I have had severely: http://forums.phoenixrising.me/index.php?threads/warnings-about-taking-some-meds-when-ill.33367/

I'm on a beta-blocker - Nebivolol - now. I am tempted to try other things but the last two I tried were awful, so I am put off. The Nebivolol doesn't affect the systolic pressure as much as it might, but often brings the pulse below 60, so I'm not tempted to try a higher dose.
 

Jimbo39

Senior Member
Messages
405
Location
San Deigo, CA
Just want to point out a possible serious side-effect from ACE inhibitors (seriously low blood pressure) that they are aware of in Scotland and which I have had severely: http://forums.phoenixrising.me/index.php?threads/warnings-about-taking-some-meds-when-ill.33367/

Interesting. This was going to be my choice. I suppose if one were to drink plenty of fluids and keep their electrolytes levels up it might be OK? This is the reason I don't want to be on diuretics.

I don't want anything that affects the CNS like beta blockers. They not only slow down the heart (and reduce blood flow) but other muscles as well. It seems like they will affect respiration and gut motility.

It seems like calcium channel blockers also do this but by a different mechanism i.e. blocking calcium and reducing constriction.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
No but I don't think I have it. I don't get light headed when I stand up and my BP doesn't drop.
Neither of those are particularly relevant to POTS, they are more specific for orthostatic hypotension.

POTS is simple to screen for at home, just track your heart rate before and during an active stand test. If your blood pressure stays constant (or increases) and your heart rate increases over 30bpm within 10 minutes you'd do well to look into it further.
 

perchance dreamer

Senior Member
Messages
1,699
My husband's BP was really high, with the systolic around 160 with one reading. He didn't want to get on meds even though maybe he should have with BP that high, so he started exercising more regularly and drinking beet juice and taking magnesium. He's healthy, so exercising is no problem for him.

It took awhile, but his BP came down, with the latest reading 130/ 80. That's still entirely too high, but it did come down a lot.

The beet juice is supposed to really help lower BP. He takes Beet Elite, a powdered extract you mix with water. I suppose he could just eat beets, but that might require my putting a gun to his head. They are his most despised food.

https://www.amazon.com/HumanN-Beete...TF8&qid=1483393153&sr=1-2&keywords=beet+elite
 

Jimbo39

Senior Member
Messages
405
Location
San Deigo, CA
The beet juice is supposed to really help lower BP. He takes Beet Elite, a powdered extract you mix with water. I suppose he could just eat beets, but that might require my putting a gun to his head. They are his most despised food.

It makes sense if it's a NO booster which leads me to question why taking it and other vasodilators wouldn't be just as effective?