In the fifth web seminar produced by the ME/CFS Association in the Netherlands is by Dr. Visser, a Dutch cardiologist. He takes on Postural Orthostatic Tachycardia Syndrome (POTS).
POT refers to abnormally high heart rates in response to standing. The prevalence of POTS in chronic fatigue syndrome is unclear.
POTS refers to an overly rapid increase in the heart rate that occurs upon standing. POTS, which was first described in the 1990s, is a relatively new disorder, but in the last three years a tremendous flood of research has occurred. In fact, forty percent of all POTS publications have been published in the last three years.
POTS is currently diagnosed when your heart rate increases 30 bpm on a tilt table test. For children the cutoff criterion is 40 bpm.
POTS, Dr. Visser said, occurs in fibromyalgia, MS, and a ‘tremendous’ number of other disorders (including hyperventilation… hmmm) as well as chronic fatigue syndrome. More connections and causes will undoubtedly be discovered in the future.
(Recently we saw that problems with the ‘chemoreflex’ that regulates CO2 levels in the blood can cause POTS. Other causes include blood pooling in the legs upon standing. Both result – in one way or another – in reduced blood flow to the brain.)
Wide Variability in Prevalence Estimates in Chronic Fatigue Syndrome
Visser noted that studies suggest from 10 to 40 percent of people with ME/CFS meet the criteria for POTS. Visser’s own personal extensive (unpublished) studies, however, have found it in about 5 percent of his patients. Visser suggested that ‘inclusion bias’ — i.e. people with POTS symptoms showing up more in some practices than others — may be causing the wide prevalence estimates.
(Dr. Natelson has found a much higher incidence of POTS in adolescents with ME/CFS than in adults. I asked him if POTS in adolescence was turning into orthostatic hyperventilation in some adults. Natelson stated he believes ME/CFS in young people is a different disease than found in adults:
“I believe CFS in young people is a different disease from that occurring in older adults. The prognosis for kids and adolescents is much better than for older folks. Their biology is much more reactive too, so that may be why. In kids, finding both POTS and orthostatic hyperventilation is not uncommon.“)
Dr. Visser on POTS
A presentation at a recent conference suggested that many people who have significant increases in heart rate upon tilting, but who do not meet the criteria for POTS, would test positive for POTS if the tilt table test were run again. This suggests, of course, that many more people should receive a POTS diagnosis than currently do.
- Check out Insights from the International Symposium on the Autonomic Nervous System Part I for this and other fascinating studies on POTS and ME/CFS.
Symptoms
As Dr. Visser aptly stated, when your heartbeat rises from 60 to 150 beats per minute, you’re going to feel something. The first thing you’ll notice will be palpitations – but also commonly dizziness, lightheadedness, nausea and other symptoms.
Cognitive problems, not surprisingly, rank high among the symptoms caused by a disorder which is characterized by reduced blood flow to the brain. (Note that the high heart rate often appears to be the body’s attempt to fix the real problem, which is a sudden loss of around 30% of the normal blood flow the brain.)
Treatment
The number of different things that can cause it complicates how to treat POTS. One general recommendation is staying adequately hydrated to keep your blood volume up.
Beta blockers can reduce the rapid heart rate and sympathetic nervous system activation and a variety of other drugs are available. It generally comes down to a process of trial and error to see which drugs work best.
Long Term Complications Affecting the Heart
The heart must be a pretty darn resilient organ. While noting that the issue has not been extensively researched, Dr. Visser stated ‘there is no indication at all’ that a fast heartbeat occurring over a long period of time can damage it.
Blood Flow and the Brain
The Dizziness – The Underappreciated Symptom
Visser finds high rates of dizziness/lightheadedness in his patient – and thinks the symptom should get more attention
One of the first things that struck Visser, a cardiologist, about chronic fatigue syndrome was the high rate of dizziness found, not just when patients with ME/CFS stood up, but when they were standing or walking or after exertion (definitely including mental exertion).
Dr. Visser believes that a symptom that strikes 50% of the people with ME/CFS should get more respect, and he lamented that it was mostly buried in the Canadian Consensus Criteria.
Given that dizziness is usually associated with reduced blood flow to the brain, the question becomes what’s stopping enough blood from getting to the brain. Visser noted that the cranial nerves might not be getting the right message regarding blood flow. There’s also the problem of low blood volume, and there’s the problem of blood pooling in the legs and abdomen that traps the blood in the lower body, keeping it from getting to the brain.
Measuring the amount of blood flowing to the brain can be expensive and complex (SPECT, MRI, PET scan) but Visser uses a simpler and less expensive method called echoscopy. Visser showed an image that indicated much reduced blood flow (a 23% reduction) to the head upon tilting – something he called ‘considerable’ and a much greater reduction than found in healthy people.
Dr. Visser on Low Blood Flows to the Brain
Visser’s many examinations done on patients lying down, sitting up, and standing revealed that just sitting up resulted in a 12% decline in blood flow to the head, while standing knocks blood flow down 18%, and the tilt table 19% – much greater declines than in healthy people.
Treatment
Substantial declines in blood flows to the brain were the norm when people with ME/CFS sat or stood up…
What can be done about reduced blood flow to the brain (and the resulting dizziness, lightheadedness, etc.)? (Standing on one’s head 🙂 ). Unfortunately, according to Dr. Visser there are ‘absolutely no drugs’ that can enhance blood flow within the brain and he noted if you are experiencing dizziness you should be careful that you don’t end up fainting (and hurting yourself).
Unfortunately, the doctor never mentions the ANS
I have mentioned it many times here, that much can be achieved regarding heart rate and arrhythmia’s, by addressing the dysbiosis with supplements and the Atkins diet, over time, for example. RP
Rich, can you say why the Atkins diet would help heart rate and arrythmias?
My probiotics sure have an impact on my heart rate!
No kidding! Have they calmed it down?
Unfortunately, the doctor never mentions the ANS
I have mentioned it many times here, that much can be achieved regarding heart rate and arrhythmia’s, by addressing the dysbiosis with supplements and the Atkins diet, over time, for example. RP
Rich, might you explain how exactly the Atkins diet and treatment for dysbiosis positively affect heart rate, etc?
Our survey confirms that dizziness is a symptom in about 50% of ME patients.
Thanks Guido…Is that a survey from a certain group?
I don’t get the connection of the Atkins diet either. High Fat, high sodium . Anything that affects the heart to me would be more Fat and Triglycerides. I am doing just the opposite with Gluten free diet.
Really would like to hear this too Cort.
Thanks for any more info.
Carole
That’s what my research uncovered too as for fat in the diet. Animal products are high in fat. And even those that are not, our body has to work over hard to process and break down properly. With me having CKD it was sort of the next in line thing to go to a vegan diet and that’s improving everything for me.
Issie
I can definitely see animal products taking more energy to break down…
I know that some fats are bad for the cardiovascular system. (Are they all bad?)
What do fats have to do with biofilms? (Sorry if I missed that before.)
My doc has found that magnesium, arginine and fat increases the strength of the protozoa and that will increase biofilms. There was a conferemce on this in 2012 and reported on by Betterhealthguy, but I’m just learning how to use this tablet and cant get the link to download. I’m supposed to keep my fat down to 20 g a day. My doc has found that any more than this helps to support what we dont want there. Since I’ve been doing this for awhile now, when I’ve messed up and had more fat or included meat in my diet as a splurge, I can sure tell that the spluge isnt worth how miserable it makes me feel and how much more I hurt and the intestional issues I get from it. To think I was doing this to myself for so many years.
Issie
Since I have a problem with Beta Blockers- If I start to have HR and Palpitations. I can take small amount of Magnesium- 5 mg Valium, drink Gatoraide (sometimes ) Lie down and mine gets better.
Also back with my CPAP machine and it has almost completely alleviated Palpitations at night .
Had machine retitrated to low pressure 5-8 which is all I needed.
Dizziness to me comes with stress and overdoing. I do the same thing . Only sitting up on bed NOT lying with head down and no quick turns.
Carole
Beta blockers can cause a degranulation of mast cells and most of us with MCAS cant take them.
Issie
Another nice review. I appreciate that you are bringing to light problems assocoated with POTS, as that’s why I joined this site to try to get the word out about it. The more people are aware of something the more chances we have of others taking notice and us finding a cure.
One thing that is happening with myself and my quest for better health is I have noticed that my neuropathies are getting better. Since my blood flows are improving and I dont have as much pooling in my legs and feet. I find that a neoprene abdominal binder is a great help for splanic pooling. (Got mine at Ross.)
I know there are alot of opinions on diet, but what I’m doing is working.
Issie
thanks Cort for finding the best info, and making it easy to read 🙂
Thanks Snu!
Greetings-
Cfs :childhood(concussion), CFS, age29,Hong Kong flu,relapse and 1975,concussion,permanent disability. Limited time available for site but find it helpful. I would note following concussion I had multiple auto-immune symptoms. Needless to say I find the viral origin vs. other causes not useful.
Currently re-researching as accident(5 broken ribs) precipitated relapse with new symptom of air hunger. Recently was in Palm Springs and was ‘normal’,eg,3 glasses of wine ( normally one sip makes me I’ll l),dancing ,etc.. Amazing! At high altitude total inertia. Did hyperberric research and was disappointed. Any recommendations?
I discovered years ago pms Midol was better then codeine etc. for migraines,ankle spasms,etc. It contains pyriline maleate,an anti histamine ,for cramping. In France,cfs was referred to as spasmophilia( considered psychosomatic but does capture common symptom). I also had an hiatal hernia and continue to have esophageal spasm. I have a rarely prescribed and effective treatment ,if interested.
My question: Is there info on subject of antihistamine in CFS. I found old(don’t have date) article where a physician treated CFS S with pyrilamine maleate resulting in significant improvement re:cfs he considered a neuro inflammatory condition. I would take it daily for brain fog but it is only found in combo. Any suggestions much appreciated.
I’m a retired psychologist,background in neuropsychology,clinical hypnosis.
This sounds like mast cell stuff. I will pass this one…
I have diagnosis of FM, not CFS, and dysautonomia. I had a TTT several years back as an EP noted clinical symptoms of POTS at my first office visit (I had already figured that out). My TTT was ‘negative’, I was up for 45mins, and will never understand how my h/r remained at 76 (considering my anxiety) but, my b/p went high 167/112, and, I was somewhat symptomatic during. I was having a really good day. My PCP and Neuro do not agree with the TTT being definitive, neither do I. I live it. In my self studies the past 12 years I’ve read that POTS does not always behave the same when patient has FM also. I ‘believe’ FM and dysautonomia to be one and the same.
I read a comment on a YouTube lecture about dysautonomia from a patient in the Netherlands mentioning that a Dr Visser was measuring blood flow to the brain with transcranial Doppler. Presume it is the same doctor. Readers will remember Dr Peter Novak (US) being mentioned on this blog. He has been using this to measure lack of blood flow in OI patients and even named some new syndromes while using it.
For those in Canada and the US, there are now a few more places this is being used thanks to Dysautonomia International grants:
Tae Chung, Johns Hopkins – neuromuscular physiatrist https://vimeo.com/483090164
Melissa Cortez, University of Utah – neurologist with an interest in headache and migraine
https://vimeo.com/359102751
Nate Robbins, Dartmouth Hitchcock – neurologist
https://www.dartmouth-hitchcock.org/findaprovider/provider/2145/Nathaniel-M-Robbins
Satish Raj, University of Calgary – cardiologist and POTS researcher, frequent speaker at DI conferences
https://vimeo.com/589514511
I totally get where you’re coming from. My dad had arrhythmia too, and once we started paying attention to his gut health with the right supplements and a more balanced diet, his heart rate became more stable. The Atkins-like diet really helped over time. However, I’d still recommend getting a heart scan, like an echocardiogram or even a CT scan, just to be sure there’s nothing else underlying. It gives a clear picture of how things are functioning and might provide additional peace of mind.