Re: What does this blood pressure fluctuation mean?

[Guest guest]

,

Dr. Poesnecker discusses blood pressure changes in his book, " Chronic

Fatigue Unmasked. " As you may know, he's the doctor who says that CFS is

essentially adrenal fatigue. In Chapter 5, he describes the phases of

adrenal fatigue/CFS and the accompanying symptoms. He says that in the

first stage, the blood pressure drops, and " this is especially evident in

the drop in blood pressure the patient experiences when he suddenly stands

up after having been reclining. "

But of the next two phases (Countershock and Resistance Phases), he says the

following:

" What we often find in our patients in this stage is that the postural blood

pressure (blood pressure taken lying down and then standing) will show an

accentuated rise when the patient stands up. In a severe case, the longer

the patient stands, the higher the pressure will go. The adrenal mechanism

has become so oversensitized that even the slightest stimulus will set it

off. . . "

This sounds like what you are experiencing. In a nutshell, it means that

your adrenal situation is worse now than it was before. You may want to

refer to Dr. Poesnecker's book for more information and treatment options.

Some of the chapters are online at www.chronicfatigue.org . I highly

recommend the book -- it has a lot of excellent information.

Take care,

> For years I was plagued with very low blood pressure and a high heart

rate.

> Over the last nine months it has changed. I still have episodes of low

blood

> pressure, low enough to make me feel light-headed and my vision fading out

> on me, and very low when I'm laying down, especially in the morning, but I

> went from having lower blood pressure upon standing to now when I stand it

> skyrockets up to high blood pressure with an increase in heart rate.

[Guest guest]

Hi ,

I suffer from extremely low blood pressure too, especially upon

standing from supine. Before I contracted CFS 11 years ago, I had

high blood pressure.

Although I have not experienced the degree of see-sawing you

describe, I have been studying the mechanisms behind blood pressure

control and would hazard a guess at cause, testing, and even

treatment.

First, three are three main systems that affect blood pressure:

neural (cardiovascular), endocrine (hormonal), and micro-circulation

(cellular level). In my case, BP fluxes throughout the day (--only,

I go from really low to just below normal), depending upon the time

of day and previous activity levels.

My doc and I believe that this is probably due to an endocrine-

related problem. Most likely, an unbalanced circadian rhythm in

regards to my HPA axis--apparently a common condition for adrenal

fatigue and CFS suffers. In other words, cortisol and other even

more powerful BP control hormones are being released at the wrong

times and probably in insufficient amounts because of adrenal

insufficiencies.

In your case, perhaps your adrenals have become recuperated enough to

produce these hormones in quantity, but your circadian rhythms are

still out of whack. If so, your body now has the reserves to release

inappropriate amounts of hormones at the wrong times, which could

explain the wild swings you describe.

So, bottom-line, I would look into your endocrine system first. Ask

your doctor to test the circadian rhythms of your adrenal gland,

using both 24-hour salvia and urine tests. I'm having these very

tests being run right now. If that turns out to be the problem, your

doctor may be able to set up some kind of hormone therapy that will

suppress or stimulate your system at the appropriate times, hopefully

evening out the swings. All of this is, naturally, just guesswork (--

I have no medical training, other than some biochemistry almost

thirty years ago ;-).

Best of luck,

- don

> For years I was plagued with very low blood pressure and a high

heart rate.

> Over the last nine months it has changed. I still have episodes of

low blood

> pressure, low enough to make me feel light-headed and my vision

fading out

> on me, and very low when I'm laying down, especially in the

morning, but I

> went from having lower blood pressure upon standing to now when I

stand it

> skyrockets up to high blood pressure with an increase in heart

rate. I can't

> take high blood pressure medication, because it drops my blood

pressure too

> low. It is currently normal most of the time, except the occasional

low

> blood pressure episode, and high blood pressure episode. But I'm

concerned

> about the episodes of high blood pressure. At times it is as high

as 160

> systolic.

>

> I understand about the hypercoagulation problems associated with

CFS, and

> I've had testing done that put me smack dab in the middle of

normal, (Not

> Hemex ISAAC, though) and I have had occasional blood clots in my

hands and

> feet, but not for a couple months. I've been taking specific

transfer

> factors and colostrum to treat infections, along with some other

things, and

> I've had a lot of improvement over the last few months. But I still

am

> plagued with a lot of problems, so I'm by far not well. But this

just seems

> to be atypical for a PWC, and I've been a moderately severe PWME,

complete

> with all the usual neurological symptoms for so long and fit the

profile so

> well for so long that I'm puzzled by this change, which I don't hear

> described by anyone. I don't know if it is a symptom of improvement

where my

> body is beginning to regulate itself more, and just hasn't reached

a point

> where it can do so coordinatedly, or if it is a new problem

developing.

>

> I understand that reduced blood pressure upon standing is an

indication of

> adrenal function problems. And for years I had low blood pressure,

so low

> that at times I would pass out, and was bedridden for a while. It

stayed

> below 100 systolic for years, and at times got as low as 60/40. For

a few

> years I was treated for this with adrenal glandulars and licorice

root

> extract, which I stopped nine months ago when I began having the

episodes of

> high blood pressure. But I want to know how my current blood

pressure

> yo-yoing could be associated with adrenal function, or kidney

function, or

> what. If it were a matter of plaque in the cardiovascular system, I

think it

> would be affected constantly by it, and not this yo-yoing effect

that I'm

> seeing, waving between low and high. But then I really don't

understand

> blood pressure quite. Anyone have any idea's? I haven't figured out

how to

> handle this, and my doctor hasn't been any help, either.

>

>

> lindaj@h...

[Guest guest]

,

You mentioned that your systolic blood pressure rises as high as 160

mm Hg when you stand now. What does your diastolic pressure do? In

particular, does it also rise, or does it drop, producing a larger

value of the pulse pressure (difference between systolic and

diastolic)?

Rich

now when I stand it

> skyrockets up to high blood pressure with an increase in heart

rate.

At times it is as high as 160

> systolic.

>

> lindaj@h...

[Guest guest]

,

I have had CFS/FMS for about 5 years now. I have been doing the heparin

protocol since May of this year. I also have adrenal fatigue and have been

on cortef since May. About three months ago I developed tachycardia..I mean

up to 190 beats per minute. The doctors have done a lot of testing to see

what type of tachycardia it is and most say it is sinus tachycardia...well

recently everytime I stand up my heart rate goes up to 160 bpm or higher and

returns to about 100 when sitting down. When I first stand up my blood

pressure goes way up but after a while it plumits. I was wondering if maybe

it is POTS (postural orthostatic tachycardia syndrome) but also think it may

be my adrenal function. I quit the cortef about a month ago because several

doctors recommended it and since then I have gotten worse. I am having an

ACTH stimulation test (does anyone know if these are accurate?) as well as a

saliva test in the works of my cortisol. I am currently on a beta blocker

or else my heart rate would be way to high all the time and I am hoping to

find out what the problem is soon because this is awful. Does your heart

rate go as high as mine? I have been to the ER a couple of times because

the heart rate wont come down if my beta blocker is wearing off, I cant take

too much beta blocker because it knocks my blood pressure way to low and I

have black out spells. Not a fun position to be in as you know. I can't

even get off the couch most days.

Take care,

Suzanne

[Guest guest]

It will be like 130/90 -160/90. The diastolic pressure does not go up as

high as the systolic pressure does. My blood pressure when I'm not having

high/low episodes is usually around 110/90 - 115/90. When it's low, it can

go as low as 80/40, (and on a few occasions got as low as 60/40, though

hasn't gotten that low for at least a year now) when it goes high it will go

as high as 160/90, but that diastolic pressure, which is my normal diastolic

pressure, is a change from the low 80/40 level that it would be just seconds

previous, so it is still a huge increase.

For me, it is strange that when it shoots up I will have the same feeling of

light-headedness and dizziness that I get when it is very low. Both seem to

trigger a rapid heart beat, as well. I can't differentiate between the two

based on how I feel, and other than actually taking my blood pressure, I

wouldn't know that it was high verses low. In fact, the first time that I

discovered it high, I had it taken at an eye doctor, and it was high, and

she asked me if I was being treated for high blood pressure, and I was

surprised, and said no, and then she told me that I had high blood pressure.

I thought at first that maybe she had just misread it, because she used a

standard cuff and stethoscope, but I went home and measured it on my digital

monitor, and it was still high. Since being off the licorice root for a

while, the high episodes only last for brief periods, instead of hours like

they originally seemed to occur, but I know that I have weak blood vessels,

because I've had a number of incidences with ruptured blood vessels in my

hands and feet that just broke out of nowhere, and having episodes with high

blood pressure has me concerned.

lindaj@...

Re: What does this blood pressure fluctuation

mean?

> ,

>

> You mentioned that your systolic blood pressure rises as high as 160

> mm Hg when you stand now. What does your diastolic pressure do? In

> particular, does it also rise, or does it drop, producing a larger

> value of the pulse pressure (difference between systolic and

> diastolic)?

>

> Rich

[Guest guest]

Have you talked to your doctor are trying catapres. It is a drug which

regulates blood pressure. Most people use it for high blood pressure, but I

use it for low blood pressure. If you're goes up and down, it seems like it

might be perfect.

Thanks,

Doris

----- Original Message -----

> For years I was plagued with very low blood pressure and a high heart

rate.

> Over the last nine months it has changed. I still have episodes of low

blood

> pressure, low enough to make me feel light-headed and my vision fading out

> on me, and very low when I'm laying down, especially in the morning, but I

> went from having lower blood pressure upon standing to now when I stand it

> skyrockets up to high blood pressure with an increase in heart rate. I

can't

> take high blood pressure medication, because it drops my blood pressure

too

> low. It is currently normal most of the time, except the occasional low

> blood pressure episode, and high blood pressure episode. But I'm concerned

> about the episodes of high blood pressure. At times it is as high as 160

> systolic.

[Guest guest]

Doris, this is very interesting. I would like to hear more information on

catapres. I had a doctor 5 yrs ago who gave me oxytocin to help with NMH.

It, however, also raised my bp a bit, so might not be recommended for those

with high blood pressure.

a

> Have you talked to your doctor are trying catapres. It is a drug which

> regulates blood pressure. Most people use it for high blood pressure, but

I

> use it for low blood pressure. If you're goes up and down, it seems like

it

> might be perfect.

> Thanks,

> Doris

[Guest guest]

It is contraindicated in people with depression, and reduces output from the

heart, which I already have a problem with, so I'm not a candidate for using

catapres. But after looking at the potential problems for it, the one that

really threw me was that once people were on catapres, they couldn't get off

it without going ballistic/panic attack plagued or other adrenal problems,

because it multiplies the adrenal sensitivity of the body while suppressing

it, and when you do try to come off it, you are hypersensitive to adrenaline

to the extreme. Are you concerned about eventually trying to get off

catapres?

I don't like the idea of becoming dependent upon any drug, and I've

specifically tried to avoid the use of drugs as much as possible because so

many of these things don't have research to determine what long-term use

does, and also because if there are side effects, I seem destined to have

the worst ones. I've had so many bad experiences with every single drug

prescription I've ever taken, so I'm more than cautious when considering

taking any medications. So often addictive drugs are recommended to PWC's,

such as antidepressants and benzodiazapines, (and I've tried them and had

major problems with them) and then those drugs perpetuate the problem and

people get stuck on them. I've gotten to the point where I'm resistant to

using drugs unless they can get at the root cause of the problem, and aren't

just a cover-up of symptoms. Catapres seems to be a cover-up.

The side effects for catapres are almost identical to the symptoms of CFS,

so I'm wondering why anyone with CFS would want to risk making their

symptoms worse by taking catapres, and then getting stuck on it. It seems

like it would only compound problems with the potential risk to make one

much worse.

And finally, I have major liver detox pathway problems, as do many PWC's,

and catapres does put an additional strain on the liver. So what are you

doing to address the detoxification burden that it adds?

lindaj@...

Re: What does this blood pressure fluctuation

mean?

> Have you talked to your doctor are trying catapres. It is a drug which

> regulates blood pressure. Most people use it for high blood pressure, but

I

> use it for low blood pressure. If you're goes up and down, it seems like

it

> might be perfect.

> Thanks,

> Doris

[Guest guest]

I have had the same problems with my blood pressure since I began

fainting in 1998. I have found Florinef & sodium chloride tablets

with excessive water to be the most helpful. \At times I have taken

proamatine as well. I tried the beta blocker atenolol to regulate my

BP but found it dropped my BP more and made me so dizzy I couldn't

even situp. I have been reluctant to try any other beta blocker after

that.

[Guest guest]

I guess you have to remember that side effects don't affect everyone. A lot

of things they list affect 1 or 2% of people. I have been taking this for 4

years and have never had any side effects. So for me your statement that

the side effects are the same as CFS has no meaning. At the time I started

it, I was unable to work. I felt like crap any time I was standing. Within

a month of taking it I started working and then I was in " remission " for 2

years. By that I mean that I was so symptom-less that I thought I was

cured. If it works that good, I don't care if it is masking the problem

artificially. I don't know anything about getting off it, had never come

across that being a problem (you obviously have found a better source of

drug information than anything I have ever seen... where did you find this

information?) Again I wonder if this is everyone or just a few people,

because the drug is taken by millions and isn't mentioned in any of the drug

books I have. I do know that when I was taking heparin I didn't need to

change my catapres patches as often, and would often go 10-14 days (you are

supposed to do 7 days). That didn't cause me any problems.

Philosophically I believe we disagree on drugs because I also take Klonopin,

it has helped me a lot, and I don't believe you would. I know that klonopin

is going to be difficult to come off, but frankly I don't care. We have to

get through today to be worried about tomorrow. As long as I am sick I will

need it, and if I ever get better I will figure out how to come off it.

Finally on liver support, I do everything that we all talk about for liver

support. My pathways were good last time I checked. But again, I would

like to know your source of information and read more about the effect on

the liver.

Thanks,

Doris

[Guest guest]

I also found no effect from beta blockers. I started florinef one time but

my doctor had scared me a lot about it, and for the 3 days I took it I had

to pee every second so I stopped.

Thanks,

Doris

[Guest guest]

I also had/have NMH. I took atenolol at first and it helped some. Then I

took oxytocin which worked very well. I no longer seem to have a big problem

iwth NMH, but I am very much better since taking Zithromax 5 yrs for

mycoplasma infections.

a

> I have had the same problems with my blood pressure since I began

> fainting in 1998. I have found Florinef & sodium chloride tablets

> with excessive water to be the most helpful. \At times I have taken

> proamatine as well. I tried the beta blocker atenolol to regulate my

> BP but found it dropped my BP more and made me so dizzy I couldn't

> even situp. I have been reluctant to try any other beta blocker after

> that.

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>