The Blood Volume Paradox in Chronic Fatigue Syndrome (ME/CFS) and POTS

[Merida]

Well, I just finished some tests and have been diagnosed with grade 1 diastolic dysfunction. I am having high blood pressure that can sky rocket when standing - orthostatic hypertension? Also chronic kidney disease in the left kidney only. Blood work on the kidney was normal, but problem showed in ultrasound of kidneys.

This all 'broke loose' after 5 close dental appointments with a crown, 4 fillings, and a cleaning - 5 months ago. It is important to appreciate that the jaw can have profound influence on the upper neck and lower cranial areas. Got to do s blog, but thus great article makes total sense. Thank you, Cort.

 

[Issie]

Well, I just finished some tests and have been diagnosed with grade 1 diastolic dysfunction. I am having high blood pressure that can sky rocket when standing - orthostatic hypertension? Also chronic kidney disease in the left kidney only. Blood work on the kidney was normal, but problem showed in ultrasound of kidneys.

This all 'broke loose' after 5 close dental appointments with a crown, 4 fillings, and a cleaning - 5 months ago. It is important to appreciate that the jaw can have profound influence on the upper neck and lower cranial areas. Got to do s blog, but thus great article makes total sense. Thank you, Cort.

Hope it wasn't the silver - mercury fillings. That can cause all sorts of issues.

You know I reversed Chronic Kidney Disease - stage 3 by going vegan. It also helped my heart function.

Have you done a poor man's tilt test on yourself? HyperPOTS people have higher BPs. Drops that can go into a more normal range - but still give the I'm dizzy, naseaus and feel like I'm going to faint, severe tachycardia. Keep in mind if you have MCAS too - beta blockers don't work at all well for us. I tried them. HUGE mistake.

Issie

 

[Gijs]

Low bloodvolume is objective and very interesting. It could explain almost every symptom of ME/POTS. I have never understand why their is so little attention for this finding. Very strange. Do people with the flu also have low bloodvolume?

 

[Cort]

hey Cort,

Thanks for the article!! You thinkin' of getting some nice new trousers? Could be a trend setter.

 

[Cort]

Low bloodvolume is objective and very interesting. It could explain almost every symptom of ME/POTS. I have never understand why their is so little attention for this finding. Very strange. Do people with the flu also have low blood volume?

I agree! Systrom thinks its vein problems are more important but geez - why are they're just digging into this...One person told me years ago that it wasn't a sexy topic - that it was really old school and they don't fund old school.

At least Medow has got some stuff going.

 

[Diana Maus]

I have seen a cardiologist for CFS since the beginning because many of my symptoms were heart related. My cardiologist said early on that I have a small heart. I thought he meant since birth. but after CFS I couldn't make it through a grocery store standing up. I couldn't stand at a cashier, or in a line. I don't have that now unless I am in a crash.

 

[voner]

Cort,

Are the Norwegians or Ron Davis studying vascular dysfunction? I thought the Norwegians are.

 

[Merida]

Hope it wasn't the silver - mercury fillings. That can cause all sorts of issues.

You know I reversed Chronic Kidney Disease - stage 3 by going vegan. It also helped my heart function.

Have you done a poor man's tilt test on yourself? HyperPOTS people have higher BPs. Drops that can go into a more normal range - but still give the I'm dizzy, naseaus and feel like I'm going to faint, severe tachycardia. Keep in mind if you have MCAS too - beta blockers don't work at all well for us. I tried them. HUGE mistake.

Issie

@Issie
Thanks again. No silver fillings here. Last one removed 15 years ago. Interesting that my very intuitive daughter has been vegan for years. I have found a cardiologist here in L.A. who specializes in dysautonomia. So, I will share what I learn. Hopefully will not be asked to try beta blockers. Interesting the comment in my maternal line family was, "We are short and have heart problems."

 

[Merida]

Comment on the Rhomberg test: This test is often not done by the neurology 45 second neuro exam. I have had an abnormal Rhomberg ( with neurosurgeon) but a recent ( new) neurologist, who is an MD, PhD, failed to do this test, and pronounced a perfectly normal neuro exam. There is a great neurosurgeon in North Carolina who really understands people like us. Spent an hour on my neuro exam, did tests, including very sophisticated urodynamic studies , and identified various issues - including a lower motor neuron bladder with a small upper motor neuro component.

Just making these comments to remind me, and others, how important it is to get to the best experts in this field of study. May the Force be with you.

 

[Cort]

Cort,

Are the Norwegians or Ron Davis studying vascular dysfunction? I thought the Norwegians are.

Fluge and Mella are..I believe they have a substudy looking at that and a hypothesis paper due to be out soon on it.( I don't think its out yet.)

.I don't believe Ron Davis is but Davis is going very molecular - looking for the gene expression, genetic, metabolomics, etc. underpinnings of the disease. He could very well find indications there that indicate vascular dysfunction or other problems are present. I think that's how they would show up in his type of study if I have what he is doing right.

 

[Cort]

Well, we know that you're not alone (lol)

I have seen a cardiologist for CFS since the beginning because many of my symptoms were heart related. My cardiologist said early on that I have a small heart. I thought he meant since birth. but after CFS I couldn't make it through a grocery store standing up. I couldn't stand at a cashier, or in a line. I don't have that now unless I am in a crash.

 

[Cort]

@Issie
Thanks again. No silver fillings here. Last one removed 15 years ago. Interesting that my very intuitive daughter has been vegan for years. I have found a cardiologist here in L.A. who specializes in dysautonomia. So, I will share what I learn. Hopefully will not be asked to try beta blockers. Interesting the comment in my maternal line family was, "We are short and have heart problems."

Looking forward to hearing how that goes. Good luck with him/her.

 

[Veet]

This is a timely discussion for me. I've just been contemplating ways of increasing blood volume. I don't seem to handle extra salt, doesn't take much for me to experience swelling. I've been thinking I'd try licorice again. It worked well for me for a couple years, but then also caused edema. My condition isn't severe, so I'm leery about trying an rx, which generally make things worse for me. Suggestions anyone?? thx. And thanks very much for another illuminating article, cort.

 

[weyland]

(This study appears to precede any studies on POTS. If so, chronic fatigue syndrome may have birthed POTS.)

They've been talking about orthostatic tachycardia in ME for decades before CFS was created.

In fact the Streeten-Bell study - done on 15 randomly selected ME/CFS patients - may have described postural orthostatic tachycardia syndrome (POTS) before it showed up in the literature.

Phillip Low at Mayo published a paper on POTS seven years before this study. I'm not sure if he was the one to coin the term but it's the first appearance in the literature of the term that I've found. Otherwise it was just called orthostatic tachycardia prior to this and I see that term being used as early as the 1940s.

 

[weyland]

Streeten and Bell found reduced blood pressure, reduced blood volume, increased norepinephrine levels and excessive tachycardia upon standing.

Perhaps I'm missing something (I can't get at the full paper) but doesn't this study say that plasma volume was normal but red blood cell volume was low?

 

[Ian Mills]

@Cort just so you know Miwa is a girl's name. It's very unlikely that this scientist is a he

 

[Cort]

They've been talking about orthostatic tachycardia in ME for decades before CFS was created.


Phillip Low at Mayo published a paper on POTS seven years before this study. I'm not sure if he was the one to coin the term but it's the first appearance in the literature of the term that I've found. Otherwise it was just called orthostatic tachycardia prior to this and I see that term being used as early as the 1940s.

Thanks. I plugged postural orthostatic tachycardia syndrome and postural tachycardia syndrome into PubMed and the first study that came up with those words in the title was in the year 2000. I thought that might have been a little off actually.

Reversible sympathetic vasomotor dysfunction in POTS patients. Freitas J, Santos R, Azevedo E, Costa O, Carvalho M, de Freitas AF. Rev Port Cardiol. 2000 Nov;19(11):1163-70.

 

[Cort]

@Cort just so you know Miwa is a girl's name. It's very unlikely that this scientist is a he

Interesting - thanks. She's a trailblazer in Japan. Although now I notice that Miwa appears to be the last name - unless they're reversed - which I guess they are come to think of it.

 

[Stacy]

I've actually been taking Desmopressin since about mid-May, for new-dx diabetes insipidus (ME/CFS for 20 years). It has brought my nighttime resting heart rate down consistently into the low-60's or lower, when it was often in the upper 70's or higher before. We've been tinkering with dosage, and the low blood sodium problem can be a real issue: totally flattening. POTS symptoms are down but not gone. My HR still soars with exertion like light gardening but not with normal household tasks (laundry, cooking). The Desmopressin's effects seem to be steadying in a good way after a month/6 weeks at the last dosage. No improvement in energy/cognitive/aches and pains (yet), but I am certainly more comfortable not needing 20 glasses of water/day just to stand up.

 

[Cort]

I've actually been taking Desmopressin since about mid-May, for new-dx diabetes insipidus (ME/CFS for 20 years). It has brought my nighttime resting heart rate down consistently into the low-60's or lower, when it was often in the upper 70's or higher before. We've been tinkering with dosage, and the low blood sodium problem can be a real issue: totally flattening. POTS symptoms are down but not gone. My HR still soars with exertion like light gardening but not with normal household tasks (laundry, cooking). The Desmopressin's effects seem to be steadying in a good way after a month/6 weeks at the last dosage. No improvement in energy/cognitive/aches and pains (yet), but I am certainly more comfortable not needing 20 glasses of water/day just to stand up.

Glad to hear it made some difference. I wonder about the connection between ME/CFS and diabetes insipidus / I wonder if there's something going on there.