Impaired Blood Pressure Variability as Potential Biomarker for CFS

[Esther12]

Anyone know if the matched controls were sedentary? I think that Newton does has used sedentary controls in the past.

Anyone read the whole paper and feel able to comment upon it? Thanks for the link Gamboa.

 

[ramakentesh]

I might have misunderstood your point, though. Maybe by "easily assessed" you meant that it's relatively easy to diagnose NMH or POTS by doing a tilt table test? (assuming the doctor doing the test understands how to read the data)

Exactly.

The vagal withdrawal may be occuring in some patients and effect baroreflex function. Also those with elevated angiotensin II levels and reduced renin may have impaired baroreflex function. Most POTS have very little parasympathetic input often in either peripheral or central vasculature activity posturally.

 

[beaverfury]

im confused. i read....shumwhere.....that 97% of cfs patients have orthostatic intolerance. The yellow Wiggle,(greg page) retired due to some orthostatic intolerance issue(not sure what). the australian press treated it rather seriously, as they should. If its clear enough to be diagnosed with a tilt table test, or as this article suggests, a task force moniter(?), why arent cfs suspected patients routinely checked for POTS when they go to their doctor? i havent had this suggested in three years of illness. Is POTS always considered an autonomic issue, or is a damaged heart sometimes the problem?

 

[biophile]

Why aren't CFS suspected patients routinely checked for POTS when they go to their doctor?

Perhaps a lack of awareness, not wanting to encourage medicalization, assumptions that the patient can manage it if it isn't severe, such symptoms being drowned out by the obsession with fatigue and illness beliefs, and (mis)attributing orthostatic intolerance to 'anxiety' or 'deconditioning'. IIRC, out of all the doctors I've seen, none was particularly interested in investigating POTS or other forms of orthostatic intolerance. I didn't know enough at the time to push it.

Just the notion of seeing a doctor now makes me cringe.

 

[GcMAF Australia]

This is so interesting. My systolic reading has been in the 40s a couple of times in the last year and I got some pretty funny looks. At the dentist office, they decided there was something wrong with the BP cuff and at the hospital, the nurse was stunned and I said, "I have CFS", and she said, "well, the body does adjust, doesn't it? - we'll get you on some IV fluids" and I felt so much better. I wonder if this has something to do with blood volume but have read it's the HPA axis that's screwed up. Don't know, but wish I could get a bag of fluid every morning - IV, please.

There was some information around years ago that CFS patients had low volume of fluids in their bodies. I have agreed with this and to me this means that the concentrations of any "toxins" or other problem chemicals is increased. Not only could this include blood volume but also the spaces between cells (extracellular space). I think this is a great post.
By considering this effect i have been able to correct a symptom.
GcMAF.

 

[GcMAF Australia]

Impaired blood pressure variability in chronic fatigue syndrome—a potential biomarker

Thanks Gamboa.
This is very important.
It explains a lot. from my understanding-
When CFS people stand the heart has to work very hard to pump the blood. (for whatever reason).
then the actual electrical wave patterns are different. The heart can use up so much energy doing this.
So CFS people cant stand for long.
Also this is apparently very important in POTS, where this is affecting the blood flow to the brain.
I hope this is clear and helps.
GcMAF

 

[Sushi]

Thanks Gamboa.
This is very important.
It explains a lot. from my understanding-
When CFS people stand the heart has to work very hard to pump the blood. (for whatever reason).
then the actual electrical wave patterns are different. The heart can use up so much energy doing this.
So CFS people cant stand for long.
Also this is apparently very important in POTS, where this is affecting the blood flow to the brain.
I hope this is clear and helps.
GcMAF

My autonomic doctor told me that it takes 30% more energy just to try to maintain some kind of homeostasis for patients with impaired autonomic systems. That is what it feels like too!

Sushi

 

[taniaaust1]

im confused. i read....shumwhere.....that 97% of cfs patients have orthostatic intolerance. The yellow Wiggle,(greg page) retired due to some orthostatic intolerance issue(not sure what). the australian press treated it rather seriously, as they should. If its clear enough to be diagnosed with a tilt table test, or as this article suggests, a task force moniter(?), why arent cfs suspected patients routinely checked for POTS when they go to their doctor? i havent had this suggested in three years of illness. Is POTS always considered an autonomic issue, or is a damaged heart sometimes the problem?

The yellow Wiggle (Greg Page) had a dysautonomia/ POTS diagnoses.

Many of us even who have severe POTS.. cant get tilt table testing done. Ive tried for about 4-5 years and know I have POTS. Instead of tilt table testing. For what are POTS collapses, Ive been sent for brain EEGS and to various heart clinics over and over, who dont do tilt table tests and which dont even know what POTS is!! (When I tell them about the condition.. they just go "what's that?").

Now Im on Florinef but just from a CFS doctor believing me as he knows of the connection of ME and POTS (and from my own home self monitoring) . I still want to be tilt table tested thou so I could have that piece of paper, a test result to prove it to doctors who dont/didnt believe me. If something happened to the doctor I see now, I would be left again with no POTS treatment at all for the severe POTS I have (Ive been unconscious at times due to it).

 

[jeffrez]

I can hear the mainstream doctors now: "Blood pressure changes all the time. That's normal. I'm concerned about this fixation you have on your BP, though - have you seen a psychiatrist?"

 

[HowToEscape?]

The yellow Wiggle (Greg Page) had a dysautonomia/ POTS diagnoses.

Many of us even who have severe POTS.. cant get tilt table testing done. Ive tried for about 4-5 years and know I have POTS. Instead of tilt table testing. For what are POTS collapses, Ive been sent for brain EEGS and to various heart clinics over and over, who dont do tilt table tests and which dont even know what POTS is!! (When I tell them about the condition.. they just go "what's that?").

Now Im on Florinef but just from a CFS doctor believing me as he knows of the connection of ME and POTS (and from my own home self monitoring) . I still want to be tilt table tested thou so I could have that piece of paper, a test result to prove it to doctors who dont/didnt believe me. If something happened to the doctor I see now, I would be left again with no POTS treatment at all for the severe POTS I have (Ive been unconscious at times due to it).

You could make a reasonable tilt table with 3/4" plywood, and a pair of heavy A frames to hold it.

 

[GcMAF Australia]

I can hear the mainstream doctors now: "Blood pressure changes all the time. That's normal. I'm concerned about this fixation you have on your BP, though - have you seen a psychiatrist?"

Ahhh but has he??? LOL
very good point
GcMAF

 

[taniaaust1]

You could make a reasonable tilt table with 3/4" plywood, and a pair of heavy A frames to hold it.

thanks for the post. I dont need to make one thou as I know a tilt table can make me pass out or bring me to a collapse as one of my chiropractors had one.. and if raised up on it (but in that case from laying to standing) ..I just instantly collapsed. That raise on a tilt table is far worst then doing a laying and standing poor mans test and physically getting up. (not sure if making tilt tables and trying them at home is good as some have been known to collapse and have their heart actually stop.. oxygen equipment etc should be on hand if using a tilt table).

The poor mans test shows my issues well enough but unfortunately most doctors wont even do that (it took 4 years for me to convince a doctor to a poor mans test..something thou my current specialist still hasnt done. Then cause it was just a poor mans test showing abnormality which caused the doctor to refer me on.. the specialist he then sent me to due to it.. didnt believe it).

Doctors just believe something better if one has had some kind of offical test done, hence why many of us push doctors for an actual tilt table test.

 

[Sushi]

You could make a reasonable tilt table with 3/4" plywood, and a pair of heavy A frames to hold it.

Having had a tilt table test in a hospital, I have to agree with Tania: not something you would want to try at home without emergency medical support handy! The tilt is apt to induce the kind of extreme responses that you might not be able to manage at home.

Sushi