Hypertension--not intracranial

MizEllie

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

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 (certainly 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 are 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!
 
Last edited:

MizEllie

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 (certainly 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 are 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!
Thanks for your input, too, Meirav. It's good to hear someone else has HTN and ME.

I'm afraid I wasn't real clear earlier. I was already on a beta-blocker before I contracted the coxsackievirus that resulted in ME. My pressure didn't start trending high enough for multiple meds with multiple modes of action until a couple of years ago.

I read the articles about the NASA lean test and skimmed others about POTS but never considered that I had it because I am hypertensive. I can stand in one place by moving my legs for a few minutes but after that, I have to sit down or I start to feel faint. Now you have me thinking of taking my pressures standing, sitting, and lying to see if I have orthostatic hypertension.

I took stinging nettle elixir for hay fever for many years. Then I moved back to my home town (northern Wisconsin, 45th latitude) and am no longer bothered by seasonal allergies. Probably because many plants that can't survive in winters that reach -30 F for days on end, don't grow here. Whatever the reason, I no longer use it. There are several good sources of bulk dried nettles in town so I will get some the next time I go shopping. I was going to ask if you or Carl#1 could offer some guidance on dosing but realized that is most likely so individualized that I will have to be my own research study. ;)

For about the thousandth time, I mentally kick myself. I had a nice row of nettles growing between the neighbor's fence and mine when I moved in 15 years ago. Not into gardening, herbs, and other such things at that time, I pulled them all out. You would think they would come back because I just yanked on the plants, but no such luck. I don't know how but I must have gotten the entire root structure. I have never used chemicals on my property so there is no crossover. I've never been so successful in eradicating a "weed" since then, either!

Once I stopped closely following the newest, greatest research and hoping this would be the one to lead to a cure or at least a treatment, at the time the ME-universe was wrapped up in retroviruses, I just got on with things and stopped focusing on my symptoms. Now I'm in the You+ME research project and am back to thinking about how I feel every day. While I recognize the importance of this crowd-based research, I am not certain this is a good thing for me as it could be driving anxiety as I experienced earlier. I am definitely more anxious now, even with daily Buddhist practice, but it's impossible to pinpoint a single cause among so many stressors we are all experiencing these days.
 

Carl#1

Active Member
Thanks for your input, too, Meirav. It's good to hear someone else has HTN and ME.
you or Carl#1 could offer some guidance on dosing but realized that is most likely so individualized that I will have to be my own research study. ;)
Meirav has posted some information which looks closer to what you are experiencing.
The link that I posted, which relates specifically to nettle seed rather than the leaf or root is the only link that I have ATM. There might be a little more on that site
Pubmed articles on Nettle
Urtica dioica L. leaf extract modulates blood pressure and oxidative stress in spontaneously hypertensive rats
There is some basic info on dosage on the Medicinal Usage tab

Nettle does have some diuretic activity which might be what influences it's blood pressure lowering effect. That is just a guess. That article does mention that it raises SOD and Calalase activity which might explain the effects that I experienced, however I am using Nettle Seed rather than the leaf which was used in that study.

Nettle is so widespread that if you have access to a uncontaminated source then it might be worth making use of. This time of year is probably past it's most active growth period and seeds might not be still available.

For about the thousandth time, I mentally kick myself. I had a nice row of nettles growing between the neighbor's fence and mine when I moved in 15 years ago. Not into gardening, herbs, and other such things at that time, I pulled them all out. You would think they would come back because I just yanked on the plants, but no such luck. I don't know how but I must have gotten the entire root structure. I have never used chemicals on my property so there is no crossover. I've never been so successful in eradicating a "weed" since then, either!

Once I stopped closely following the newest, greatest research and hoping this would be the one to lead to a cure or at least a treatment, at the time the ME-universe was wrapped up in retroviruses, I just got on with things and stopped focusing on my symptoms. Now I'm in the You+ME research project and am back to thinking about how I feel every day. While I recognize the importance of this crowd-based research, I am not certain this is a good thing for me as it could be driving anxiety as I experienced earlier. I am definitely more anxious now, even with daily Buddhist practice, but it's impossible to pinpoint a single cause among so many stressors we are all experiencing these days.
I have removed Nettle from my garden too before I knew of it's benefits.
 

Meirav

Member
I also used the nettles to treat hayfever in the springtime.
I more or less stopped having that and asthma when I removed wheat (not gluten) and dairy from my diet.
I'd dip into them every few years, and the allergies would follow.
Until eventually I had an anaphylactic attack from a small pastry with both.
I then learned about Mast Cell Activation Syndrome, and dug up the nettles.
I make a batch of three cups at a time - 1 heaping tablespoon of dried leaves per cup.
I pour boiling water over them, close and let it sit overnight.
I then put in in the refrigerator and drink a cup a day.
Sommmmmmmmetimes I get a reaction when I take a bite of something, and so it's always there when I need it.

In traditional herbalism (old medicine, before industrial times) it was regarded as a blood tonic,
fir after the long winter months.

I find it helps to remember a lot of this is... hypotheticals.
There is research, some findings.
A bit more is known now, but as to why the known happens...
And when you learn a new piece of information, suddenly you see everything from that angle,
and then things make sense in a different way.
And sometimes much less scary than what it seems at first.
And more often that we think, correlation is mistaken for causation.

I also like solving puzzles - literally. Word games, physical puzzles, conundrums, design problems, maths, etc. SO like a health detective going about figuring things out.
I'm chewing on some bones now...

Looking after your health is important.
Making yourself more anxious doesn't help with the blood pressure :)

I sometimes get overwhelmed and I just need to feel it and process it.
I know in a day or two I will be over it and back in business.

if you do want to investigate your orthostatic status -
I tried doing the standing test that they have you do at doctor's and it didn't show much.
and another time, my HR went up when I laid down, and then down when I stood up
(by now I understand better what the dysautonomia does when we laying down...)
The NASA lean test was key for me.
Do have rehydration oral liquids at hand, and if you feel that you need to lay down before the 10 minutes are up, do so. Maybe do it with a doctor if you know a friendly one.

Let 'em weeds grow!
If you are in cold lands, maybe you can try Solomon's seal and if it works, you can grow it!
Or blue vervain. You can have your own medicinal garden! That is, if you have energy to do it, and the joints/muscles/bones for it.
Blue vervain looks really interesting because it's for neck pain. And many of us have that problem with the not enough blood reaching our brains.
Or ostheoarthritis? solomon's seal may help with that.
I haven't had the chance to try them myself yet.


Cheers!
 
Last edited:

MizEllie

Member
Meirav has posted some information which looks closer to what you are experiencing.
The link that I posted, which relates specifically to nettle seed rather than the leaf or root is the only link that I have ATM. There might be a little more on that site
Pubmed articles on Nettle
Urtica dioica L. leaf extract modulates blood pressure and oxidative stress in spontaneously hypertensive rats
There is some basic info on dosage on the Medicinal Usage tab

Nettle does have some diuretic activity which might be what influences it's blood pressure lowering effect. That is just a guess. That article does mention that it raises SOD and Calalase activity which might explain the effects that I experienced, however I am using Nettle Seed rather than the leaf which was used in that study.

Nettle is so widespread that if you have access to a uncontaminated source then it might be worth making use of. This time of year is probably past it's most active growth period and seeds might not be still available.


I have removed Nettle from my garden too before I knew of it's benefits.
Thanks, Carl#1!
All information gratefully received.
 

MizEllie

Member
I also used the nettles to treat hayfever in the springtime.
I more or less stopped having that and asthma when I removed wheat (not gluten) and dairy from my diet.
I'd dip into them every few years, and the allergies would follow.
Until eventually I had an anaphylactic attack from a small pastry with both.
I then learned about Mast Cell Activation Syndrome, and dug up the nettles.
I make a batch of three cups at a time - 1 heaping tablespoon of dried leaves per cup.
I pour boiling water over them, close and let it sit overnight.
I then put in in the refrigerator and drink a cup a day.
Sommmmmmmmetimes I get a reaction when I take a bite of something, and so it's always there when I need it.

In traditional herbalism (old medicine, before industrial times) it was regarded as a blood tonic,
fir after the long winter months.

I find it helps to remember a lot of this is... hypotheticals.
There is research, some findings.
A bit more is known now, but as to why the known happens...
And when you learn a new piece of information, suddenly you see everything from that angle,
and then things make sense in a different way.
And sometimes much less scary than what it seems at first.
And more often that we think, correlation is mistaken for causation.

I also like solving puzzles - literally. Word games, physical puzzles, conundrums, design problems, maths, etc. SO like a health detective going about figuring things out.
I'm chewing on some bones now...

Looking after your health is important.
Making yourself more anxious doesn't help with the blood pressure :)

I sometimes get overwhelmed and I just need to feel it and process it.
I know in a day or two I will be over it and back in business.

if you do want to investigate your orthostatic status -
I tried doing the standing test that they have you do at doctor's and it didn't show much.
and another time, my HR went up when I laid down, and then down when I stood up
(by now I understand better what the dysautonomia does when we laying down...)
The NASA lean test was key for me.
Do have rehydration oral liquids at hand, and if you feel that you need to lay down before the 10 minutes are up, do so. Maybe do it with a doctor if you know a friendly one.

Let 'em weeds grow!
If you are in cold lands, maybe you can try Solomon's seal and if it works, you can grow it!
Or blue vervain. You can have your own medicinal garden! That is, if you have energy to do it, and the joints/muscles/bones for it.
Blue vervain looks really interesting because it's for neck pain. And many of us have that problem with the not enough blood reaching our brains.
Or ostheoarthritis? solomon's seal may help with that.
I haven't had the chance to try them myself yet.


Cheers!
 

MizEllie

Member
Great information, Meirav. Thanks much.

I am fortunate that I have never had Mast Cell Activation Syndrome so I continue, like a good Wisconsin girl/woman, to drink milk in my decaf coffee and 16 oz of homemade kefir daily. I tried going gluten-free when messing around with SIBO and IBS diets but it didn't make a difference.

Last fall blood tests were done that showed I have an issue with the bran on wheat and other grains. So no more of my homemade whole wheat bread with a sourdough starter that came West on the Oregon Trail. After nine months of no whole wheat or other bran-containing foods like brown rice, I have slowly re-introduced some whole wheat from a commercial sourdough bakery about 30 miles from here that uses organic flours and seeds. So far so good. In truth, her breads are as good as mine and I don't even want to go back to baking my own.

I had Soloman's Seal growing in a perennial border in the back yard but I think it got crowded out with Black Cohosh and Cup Plants in the same area. I will have to look and see. When I was younger and healthier I was starting an herbal garden. We have a native plant nursery, PrairieNursery.com, here in the great north. I got many natives from them.

Thanks also for the links. I went to McDonald's site and, with a quick skimming, was impressed with his knowledge and how he presents information. As it's now after 6 pm, I don't have the spoons for any intensive reading tonight. However, know I will get to it.
 

Meirav

Member
You've got the right climate to grow all these herbs!

If you are interested in medicines,
Cort had posted about this on hyperadrenergic POTS:
(Maybe make sure that is what you have first.. )
Screenshot_20200106-021230.png
 

JameDiagonal

Active 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?
This is very informative, but get well soon.
 
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?
Hypertension was one of my first symptoms. I originally controlled it with clonidine because it also helped with other symptoms. It went away for a year or so but returned, and clonidine no longer worked. Now I take lisinopril, but it doesn't always work.
 

MizEllie

Member
Interesting that your BP waxes and wanes like that, Helen. Have you spoken with the healthcare provider who prescribed lisinopril?
 

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