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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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Hypertension and ME/cfs

Lou

Senior Member
Messages
582
Location
southeast US
Hi all,

In the long course of ME/cfs things can sure change. For the longest my bp was very low, but in last couple of years has gone in opposite direction. I've tried to lower it with natural methods, but may have to resort at least temporarliy to some bp drug.

For those that have both ME/cfs and high bp may I ask how you are treating it? Are ace inhibitors or beta blockers preferred for ME patients? My concern is having pronounced side effects from most any medicine, and wonder if a particular bp drug works best for us.

I'd really appreciate some guidance here. Thanks.

All the best,

Lou
 

adreno

PR activist
Messages
4,841
Pharmaceutically, I would go for an angiotensin ii receptor antagonist, if possible. Side effects are benign, and they actually have many beneficial effects, like reducing inflammation, decreasing fibrosis and maybe even prolonging life span.

Betablockers are horrible for fatigue, IMO. They are also likely to damage your heart in the long run (but so is hypertension).
 

adreno

PR activist
Messages
4,841
Yes, doesn't this almost sound too good to pass up, lol:

Blockade of brain angiotensin II AT1 receptors ameliorates stress, anxiety, brain inflammation and ischemia: Therapeutic implications.

Abstract

Poor adaptation to stress, alterations in cerebrovascular function and excessive brain inflammation play critical roles in the pathophysiology of many psychiatric and neurological disorders such as major depression, schizophrenia, post traumatic stress disorder, Parkinson's and Alzheimer's diseases and traumatic brain injury. Treatment for these highly prevalent and devastating conditions is at present very limited and many times inefficient, and the search for novel therapeutic options is of major importance. Recently, attention has been focused on the role of a brain regulatory peptide, Angiotensin II, and in the translational value of the blockade of its physiological AT(1) receptors. In addition to its well-known cardiovascular effects, Angiotensin II, through AT(1) receptor stimulation, is a pleiotropic brain modulatory factor involved in the control of the reaction to stress, in the regulation of cerebrovascular flow and the response to inflammation. Excessive brain AT(1) receptor activity is associated with exaggerated sympathetic and hormonal response to stress, vulnerability to cerebrovascular ischemia and brain inflammation, processes leading to neuronal injury. In animal models, inhibition of brain AT(1) receptor activity with systemically administered Angiotensin II receptor blockers is neuroprotective; it reduces exaggerated stress responses and anxiety, prevents stress-induced gastric ulcerations, decreases vulnerability to ischemia and stroke, reverses chronic cerebrovascular inflammation, and reduces acute inflammatory responses produced by bacterial endotoxin. These effects protect neurons from injury and contribute to increase the lifespan. Angiotensin II receptor blockers are compounds with a good margin of safety widely used in the treatment of hypertension and their anti-inflammatory and vascular protective effects contribute to reduce renal and cardiovascular failure. Inhibition of brain AT(1) receptors in humans is also neuroprotective, reducing the incidence of stroke, improving cognition and decreasing the progression of Alzheimer's disease. Blockade of AT(1) receptors offers a novel and safe therapeutic approach for the treatment of illnesses of increasing prevalence and socioeconomic impact, such as mood disorders and neurodegenerative diseases of the brain.

PMID 21035950
 

Shellbell

Senior Member
Messages
277
Betablockers are horrible for fatigue, IMO. They are also likely to damage your heart in the long run (but so is hypertension).[/QUOTE]


Adreno, please tell me more. I have been on a beta blocker now for 12 years. I am taking the lowest dose of atenelol at 25mg. I developed high blood pressure before I got really sick. After balancing my hormones 6 years ago, I was in the process of coming off of my meds until I got really sick from my adverse reaction to cipro. I can't get anywhere near coming off now as I still have tacky issues daily in the am upon wake-up. My doctor really wants me off of them. She wasn't the doc that put me on it to begin with. She said she never would have either.

I find when I start to feel better (like last fall, early winter when I felt like I was making a good recovery), then the need for the BB lessens. But after the paint exposure after Christmas, the need for atenelol went back up. I want off this stuff!!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Beta blockers caused extreme foot swelling for me. Each of my feet was bigger than a shoebox. This was so fast I am surprised I did not get other symptoms from all that sudden fluid buildup.

ACE inhibitors often prevent you from taking potassium I think. I am not sure this is true of all of them, but I suspect so. I was on these for a decade, they were the least problematic for me. Recently I needed to take potassium though. Not all ACE inhibitors worked for me either - I had to try a few.

Diuretics reduce body fluid - which is a bad idea in ME.

I am currently on Clonidine, an adrenal antagonist. This improves sleep quality too though not duration - I have to nap more now. It does mean I can take potassium supplements though.

I have severe NMH, severe enough that I fall down stairs when its out of control and had my heart stop on a tilt table test. I think the high blood pressure serves as a way to counter NMH, but it could just be a lucky coincidence.

Bye, Alex
 

ramakentesh

Senior Member
Messages
534
When you say you have hypertension - do you mean that you suffer from essential hypertension that does not alter whether you are upright or supine? Or postural hypertension? There is a big difference.

In POTS and CFS-related OI you have reduced cerebral blood flow when upright and abnormal cerebral autoregulation resulting in less buffering of peripheral blood pressure fluctuations. Often there can be excessive pressor responses to orthostatic stress manifesting as postural hypertension.

Postural hypertension can be compensatory - in an attempt to maintain cerebral blood flow in the face of reduced alpha 1 or ang II mediated vasoconstriction or perhaps due to abnormal cerebral autoregulation as a primary problem, or this can be part of the primary problem through excessive sympathetic activity or hypovolumia resulting in excessive vasoconstriction and reduced venous return to the heart - which again leads to abnormal cerebral autoregulation through parasympathetic withdrawal.

The point being that many with postural hypertension also suffer from dizziness, feel worse after taking ace inhibitors and occasionally beta or combined alpha/beta blockers.

Hypovolumic POTS patients exhibit postural hypertension as do some neuropathic patients, those with angiotensin II mediated sympathteic excess and perhaps also the NET deficiency. All also exhibit dizziness. The key is determining whether its compensatory or etiological.

Finally, nearly all the dangers of hypertension arent present at least in POTS or NCS - low blood volume instead of high, reduced cardiac and cerebral perfusion instead of increased and importantly most of the dangers of hypertension occur from sustained elevations, not postural fluctuations.

ARBs can work wonders for some POTS patients - particularly those with vasoconstrictive forms. By increasing nitric oxide bioavailability, reducing sympathetic stimulation, they reduce vasoconstriction, increase stroke volume and improve cerebral autoregulation. Exercise also works well to increase ang II catabolism.
 

ramakentesh

Senior Member
Messages
534
Adreno - as Im sure you are aware, 20-25% of POTS patients have elevated angiotensin II levels as a primary etiological problem.
 

adreno

PR activist
Messages
4,841
Adreno - as Im sure you are aware, 20-25% of POTS patients have elevated angiotensin II levels as a primary etiological problem.

Yes, I know this, thanks. And you're right; if Lou has POTS it will be tricky finding the right drug.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Finally, nearly all the dangers of hypertension arent present at least in POTS or NCS - low blood volume instead of high, reduced cardiac and cerebral perfusion instead of increased and importantly most of the dangers of hypertension occur from sustained elevations, not postural fluctuations.

Hi, I have severe orthostatic hypertension.. BP goes up to 170/138 when I stand. There are two others Ive spoken to who had it going up as high as mine (one was going a bit higher) and they both ended up with heart failure due to orthostatic hypertension not being treated. One was only in his late 30s or early 40s. (note.. it is true thou they werent ME patients..but they certainly had the same orthostatic hypertension I seem to have).

There is also study(ies) done on what they refered to as "big dippers"... those who have major swinging BPs like what happens in us (mine goes very low when I lay) ... and they have found that this swingly BP is another risk factor for having a heart attack (on top of the normal high BP one)..

Due to those two Ive spoken to who now have heart failure and also that study.. I wouldnt say this condition isnt dangerous.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Hi all,

In the long course of ME/cfs things can sure change. For the longest my bp was very low, but in last couple of years has gone in opposite direction. I've tried to lower it with natural methods, but may have to resort at least temporarliy to some bp drug.

For those that have both ME/cfs and high bp may I ask how you are treating it? Are ace inhibitors or beta blockers preferred for ME patients? My concern is having pronounced side effects from most any medicine, and wonder if a particular bp drug works best for us.

I'd really appreciate some guidance here. Thanks.

All the best,

Lou

Lou. Essential hypertension is actually rare with ME/CFS... I think the stats are that 86% of us have low BP.

The number of us who have dysregulated BP due to the autonomic system dysfunctions ME issues would be next after that (where BP is going both high and low) but the numbers for that havent been studied. From discussions on this site I think the dysregulation high BP issue is more common in us then essential hypertension (some may also be getting wrongly diagnosed with essential hypertension when they have orthostatic hypertension).

As I have both high and low BP, the doctor who did see this issue wouldnt treat my high BP (as it would then drop my low BP when I lay down lower.. Ive had 24 hr BP monitoring done). I also have POTS. Im about to try Fludrocortisone for the POTS which is actually contraindicated for hypertension. But in my case low blood volume is probably causing both my POTS and the orthostatic BP

Have you got POTS or NMH with the ME as well?
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I have genetic hypertension (3 genes cause it) and with a boatload of vitamins many supposedly to help I have bp 176/117 and was scared to sneeze in case I burst a blood vessel (seriously it hurt to move my eyes, turn my head). I get nonetheless low b.p. during allergy season (adrenal fatigue). I take cal/mag 1:1 plus DHEA to keep my bp normal and I take that year round allergy season or no and it does not seem to cause my bp to go lower during allergy season.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,098
Location
australia (brisbane)
I had hypertension from chronic sinusitis, my normal bp was 130/80 and when sinusitis was at its worst with severe facial pain, probably frontal sinuses, my bp was 150/120. valium initially helped with pain and bp for the short term but treating the infection with antibiotics has my bp return to normal again.

cheers!!!
 

triffid113

Day of the Square Peg
Messages
831
Location
Michigan
I had hypertension from chronic sinusitis, my normal bp was 130/80 and when sinusitis was at its worst with severe facial pain, probably frontal sinuses, my bp was 150/120. valium initially helped with pain and bp for the short term but treating the infection with antibiotics has my bp return to normal again.

cheers!!!

Wow! Thanks for the info heaps. I am trying to learn all the things that will throw my b.p. off. Now a new one - sickness. sheesh! Good thing I did get a prescription 4 those times that something like that comes along.

Trif
 

meadowlark

Senior Member
Messages
241
Location
Toronto, Canada
Hello.... better late than never to the thread, I guess.

I had slow onset ME/CFS, and from 1983 to 2000, the primary symptom was extreme migraine with fierce pain/numbness down the left side, every day, lasting all day. Migraines/hemiplegia continued on most days after my M.E. became full-blown. I'm now 75% bedbound.

Well, I woke up one morning earlier this year and had no migraine for the first time in 30 years. So (ironically) I went to the doctor. Turns out BP was in the low 180s over low 120s. (I assume that uniformly constricted blood vessels had eliminated the migraine.) My BP steadily descended to normal over the course of ten days (and then, of course, the migraines and hemiplegia returned). I had to wait a month to see a cardiologist, who put me on an apo-candesartan regimen.

Two weeks ago I woke to a pain-free head again, and my new home BP device clocked me at the 180/120 range. The first appt. I could get with my cardiologist is now a month away. Meanwhile, my reading hasn't gotten lower than 163, sometimes bouncing from 180 to 163 and back in the course of the day. (In the previous episode, it fell steadily and predictably.) I have the usual list of grotesque hypertension symptoms, and my whole body feels keyed up and chaotic. Unfortunately a friend of mine just had a stroke. That is terrible all on its own, but it also makes me edgy regarding my BP. But other than not exerting myself (which I don't do anyway--I have M.E.!) I don't know if there's anything I can do as I wait for the doctor. Any suggestions?
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Hi--both magnesium and arginine might help a bit, as might meditation or any other relaxation technique, including slow, measured breathing. Good luck! I had bursts of very high BP sometimes after a little exercise, but thankfully that symptom seems to have quieted down. Chris
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
The first appt. I could get with my cardiologist is now a month away. Meanwhile, my reading hasn't gotten lower than 163, sometimes bouncing from 180 to 163 and back in the course of the day. (In the previous episode, it fell steadily and predictably.) I have the usual list of grotesque hypertension symptoms, and my whole body feels keyed up and chaotic. Unfortunately a friend of mine just had a stroke. That is terrible all on its own, but it also makes me edgy regarding my BP. But other than not exerting myself (which I don't do anyway--I have M.E.!) I don't know if there's anything I can do as I wait for the doctor. Any suggestions?

sending you some ***hugz*** , that would be very worrisome. I do worry about my own high BP but at least I know it comes back down.
 

meadowlark

Senior Member
Messages
241
Location
Toronto, Canada
Thank you, Tania. It does worry me. That said, I was raised in an "anti-drama, anti-fuss" family, so at the same time I am scoffing at my worries. I have a dear friend in hospital with Guillain Barre syndrome. In contrast to her, I actually feel lucky (though I envy her for the fact that she will recover in a year or so.) I can also advise her on some coping strategies.