Hypertension--not intracranial

MizEllie

New Member
I was diagnosed with ME/CFS in early 2007 after becoming ill with a coxsackievirus infection during the previous December--one that normally only toddlers get. I was taking blood pressure medication (beta-blocker) then.

These days, I see a nephrologist for my hypertension. He put me on an alpha and beta-blocker (Carvedilol), a calcium channel blocker (nifedipine), and an angiotensin receptor blocker (Losartan). Even with all of those medications, my pressure is usually in the mid-high 130s/low 70s. A diuretic (Lasix) is managed by ENT because I also have Meniere's Disease.

Social Security is my only income. I cannot afford to pay out of pocket and I cannot travel farther than I can drive. My family is supportive but doesn't have extra funds to help send me and a helper over a thousand miles away to see even the closest doctor.

My understanding is that most PwME are hypotensive. Has anyone seen or experienced HTN in ME/CFS before?
 

Carl#1

Active Member
My BP was 89/49 for a long time but recently it has risen to 110-130/65-70 which is not a good sign. Raised BP can be caused by circulatory disease and/or kidney disease. These are promoted by inflammatory processes which are common in people with this illness. I do not take any BP medication but I expect that my BP will dramatically rise if I can finally destroy the pathogens which cause my CFS.
[EDIT] before posting just did a BP check and got 96/61/61 pulse which is a little better but still quite a bit higher than it used to be. The Diastolic in particular is a lot higher, 24.5% higher. My pulse used to read at around 55. The time of day here is likely to be influencing ie lowering it ATM.

Do you have confirmed Kidney disease? You say that you are seeing a Nephrologist.

I recently started taking Nettle Seed Tincture because several herbalists recommend it for Kidney health and protection. It is claimed to be an adaptogen which treats adrenal exhaustion which is common to some degree in CFS. I guess that it also raises the bodies antioxidants because my insulin requirement has dropped significantly since I started taking it. I am T1 Diabetic. Nettle seed, not leaf, is what is used. Nettle leaf has different properties.

https://napiers.net/nettle-seed-uses.html

Stephen Harrod Buhner who is a well known herbalist who writes books on treating Lyme disease, Viral & Microbial infections and recently published several pdf's on treating COVID-19. The herbs that he recommends for COVID-19 do work very well because I believe that I had COVID-19 despite not seeing anyone to catch it. I must of caught it from any of the deliveries that I had received and because I have Sinusitis and need to touch & blow my nose quite a lot. Having snot dripping is not an option I want to entertain.

https://www.stephenharrodbuhner.com/articles/

If money is as tight as you say, it might be worth keeping your eyes open or your family doing the same, for nettle seed. It is getting a bit past it's availability but you might just find some if you are lucky. The Napiers site that I linked has recommendations on harvesting it and precautions to take.

There are also some Chinese herbs which can help and improve kidney function. Astragalus is one. I use a Chinese 5:1 extract powder. Red Sage Dan Shen is helpful for the circulatory system. Cordyceps mushroom helps to reduce inflammation, lowering/normalizing cytokines. It is also helpful for COVID-19. I had stocked up on these herbs before I got COVID-19 so I was prepared. I did not have anything to deal with the clotting problems that COVID-19 can cause. I was out of Nattokinase and had very little Serrapeptase. I mention these so that you can look into them in case there is any way that you might want to use them. Research them beforehand!

Treating the inflammatory processes is helpful. It helps me quite a lot. Inflammation as I already said can promote circulatory disease. Things like Serrapeptase and Nattokinase can be helpful but are a not free. Producing some Natto using soya beans and Bacillus Natto would provide large amounts of Natto and important Vitamin K2-Mk7 which also helps to prevent circulatory disease. That would be the cheapest option. You would need to check that it does not interact with your medications. The only problem with Natto is it can be unpleasant for some people. It is a bit of an acquired taste ;)
 

MizEllie

New Member
My BP was 89/49 for a long time but recently it has risen to 110-130/65-70 which is not a good sign. Raised BP can be caused by circulatory disease and/or kidney disease. These are promoted by inflammatory processes which are common in people with this illness. I do not take any BP medication but I expect that my BP will dramatically rise if I can finally destroy the pathogens which cause my CFS.
[EDIT] before posting just did a BP check and got 96/61/61 pulse which is a little better but still quite a bit higher than it used to be. The Diastolic in particular is a lot higher, 24.5% higher. My pulse used to read at around 55. The time of day here is likely to be influencing ie lowering it ATM.

Do you have confirmed Kidney disease? You say that you are seeing a Nephrologist.

I recently started taking Nettle Seed Tincture because several herbalists recommend it for Kidney health and protection. It is claimed to be an adaptogen which treats adrenal exhaustion which is common to some degree in CFS. I guess that it also raises the bodies antioxidants because my insulin requirement has dropped significantly since I started taking it. I am T1 Diabetic. Nettle seed, not leaf, is what is used. Nettle leaf has different properties.

https://napiers.net/nettle-seed-uses.html

Stephen Harrod Buhner who is a well known herbalist who writes books on treating Lyme disease, Viral & Microbial infections and recently published several pdf's on treating COVID-19. The herbs that he recommends for COVID-19 do work very well because I believe that I had COVID-19 despite not seeing anyone to catch it. I must of caught it from any of the deliveries that I had received and because I have Sinusitis and need to touch & blow my nose quite a lot. Having snot dripping is not an option I want to entertain.

https://www.stephenharrodbuhner.com/articles/

If money is as tight as you say, it might be worth keeping your eyes open or your family doing the same, for nettle seed. It is getting a bit past it's availability but you might just find some if you are lucky. The Napiers site that I linked has recommendations on harvesting it and precautions to take.

There are also some Chinese herbs which can help and improve kidney function. Astragalus is one. I use a Chinese 5:1 extract powder. Red Sage Dan Shen is helpful for the circulatory system. Cordyceps mushroom helps to reduce inflammation, lowering/normalizing cytokines. It is also helpful for COVID-19. I had stocked up on these herbs before I got COVID-19 so I was prepared. I did not have anything to deal with the clotting problems that COVID-19 can cause. I was out of Nattokinase and had very little Serrapeptase. I mention these so that you can look into them in case there is any way that you might want to use them. Research them beforehand!

Treating the inflammatory processes is helpful. It helps me quite a lot. Inflammation as I already said can promote circulatory disease. Things like Serrapeptase and Nattokinase can be helpful but are a not free. Producing some Natto using soya beans and Bacillus Natto would provide large amounts of Natto and important Vitamin K2-Mk7 which also helps to prevent circulatory disease. That would be the cheapest option. You would need to check that it does not interact with your medications. The only problem with Natto is it can be unpleasant for some people. It is a bit of an acquired taste ;)

Thanks for your detailed and informative reply, Carl#1. I appreciate the time you took.

The puzzler is that I do not have kidney disease. I see a nephrologist because blood pressure is regulated by the kidneys and I require drugs with three different modes of action to control it. I also have a normal cardiac history. I had an ECG and ECHO cardiogram last year that showed clean vessels and valves that were functioning normally. No hypertrophy. Nothing that would cause an otherwise (except for ME) healthy 68 YO to have high blood pressure. As far as I know, I am the only person in my immediate family with this degree of essential HTN. I am 30 lbs above my ideal weight, overweight but not morbidly obese. I was a nurse practitioner with mild hypertension before manifesting this damn disease 14 years ago.

While I don't take the herbs you mention for inflammation, I understand the importance of controlling it. Consequently, I use Black Cumin Seed Oil, alpha lipoic acid, fish oil, Vit D, acetyl l-carnitine, glutamine, ashwaghanda, and CBD for inflammation. (There's where the "extra" money goes.) ;)

Sadly, I'm left to my own devices when it comes to uncovering the root cause of my high blood pressure. My primary doc and nephrologist don't have the time, and maybe inclination, to dig around and figure it out. I poke around a bit here and there in PubMed and other medical sites but I've never thoroughly researched possible causative factors in my particular case. Then again, I'm also in the first stages of dementia so I don't fire on all cylinders at all times any longer. ;D

So maybe I should stop trying to solve this problem and devote my time to less intensive pursuits.
 

Meirav

Member
Hi!

You were put on the beta blockers because of high blood pressure when you first got sick?

Some do have high blood pressure - specifically related to Postural Orthostatic Tachycardia Syndrome (POTS). Properly it should maybe be called orthostatic hypertension. Some have labile blood pressure.

I myself have problems along these lines. In the last years, my 'resting' measurements are on the higher side as well. I would have to lay down for a long time (more than 10 minutes) for my BP and HR to come back down. To the untrained eye, they may say I have high blood pressure.
I don't. It's orthostatic (and it also can dip down to low, hence, labile BP).

if you are interested in finding out if this affects you, Cort has great posts on this.
Recently, he's had a few on the more current research
- (though they don't really mention the high blood pressure, most of the studies forget to include this group unfortunately, we do exist) -
and even a potential treatment accessible to all.
Given your conditions (Demenier's and salt intake, etc) you would know best what you can tolerate or not. Maybe consult with your doctor first.
There's an older, informative post on hyperadrenergic POTS as well.
Maybe this applies to you, maybe it doesn't. If you inclined to find out.
Read through the comments as well.

I drink nettle infusions too. They don't impact my HR and BP directly - it does do something to my POTS and other symptoms. Definitely there are others for whom nettles does something good too.
I started taking it for allergy symptoms, and found it addressed more than that.
You can make infusions from the leaves. The seeds, you can have them fresh too.
I prefer fresh/dried forms. The alcohol and glycerine in tinctures do not sit well with my constitution.

Here is a good primer how to identify and harvest the leaf and seed:

Someone posted recently on their use of cumin seeds - that may be even cheaper than the oil?

Good luck!
 

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