Anticholinergic Syndrome matches our symptoms remarkably. Is CFS/ME a low Acetylcholine issue? 10 Symptoms listed below. Including PEM!

[Raba]

Anyone supplementing with Phosphatidyl Choline?

Symptoms of Anticholinergic Syndrome:

From:https://vagusnervesupport.com/top-ten-symptoms-low-acetylcholine/

“1. “Brain Fog”, Poor Short-Term Memory:
Acetylcholine is the neurotransmitter needed by the neurons of the brain to communicate with each other. Low acetylcholine causes difficulties with cognition, “brain fog”, and mental fatigue.
2. Fatigue, Especially Fatigue That Worsens With Exertion:
Acetylcholine is required by the peripheral nervous system allowing muscles to work. Insufficient acetylcholine levels result in muscle weakness that worsens with exercise or exertion. The muscles may work for a while, then exhaust their supply of acetylcholine, leading to extreme fatigue.
3. Constipation / Gastroparesis (“can’t poop”):
The vagus nerve uses acetylcholine to assist every aspect of digestion including peristalsis (movement of food or stool through the digestive tract). Stomach acid production, the opening of the pyloric sphincter at the bottom of the stomach, gallbladder function, some pancreatic function, and opening of the Sphincter of Oddi (which allows bile and pancreatic enzymes to pass into the intestines). Therefore, low acetylcholine levels are especially detrimental to the digestive tract.
Because the vagus nerve is such an important part of the digestive tract low acetylcholine levels can be especially detrimental. Chronic constipation and/or gastroparesis. are very common symptoms of low acetylcholine.
Poor digestion and poor absorption of critical nutrients are also common symptoms of low acetylcholine potentially leading to malnutrition.
4. Dry Eyes (“dry as a bone”):
Normal tear production is a process of our autonomic nervous system. Acetylcholine is required by the lacrimal gland to produce tears. Acetylcholine is also used by the nerves to tell our bodies when to produce tears. When levels of acetylcholine are low, dry, painful eyes can result. Dry eyes due to insufficient acetylcholine are resistant to conventional dry eye treatment unless acetylcholine levels are restored.
5. Orthostatic Hypotension:
Suboptimal acetylcholine levels can cause low blood pressure when standing, causing dizziness and weakness.
6. Flushing (“red as a beet”):
Patients with low acetylcholine often experience episodes of flushing (redness) on the face. The neck and other parts of the body may also appear flushed. It is common for flushing to be misdiagnosed as rosacea or mast cell activation.
7. Emotional Instability (“mad as a hatter”):
People with low acetylcholine levels often suffer from the inability to cope with their emotions. Their emotional state can be unpredictable.
8. Chronic Inflammation:
Acetylcholine is needed by the vagus nerve (the anti-inflammatory pathway of the body). Low levels of acetylcholine contribute to consistently high inflammation which can cause pain, atherosclerosis, fatigue, hypercoagulation (easy blood clotting), and premature aging. Chronic inflammation is an often overlooked symptom of low acetylcholine which results in accelerated aging.
9. Fast Heart Rate (Tachycardia):
The parasympathetic nervous system is the body’s “rest and digest” system. When levels of acetylcholine are insufficient, the vagus nerve no longer slows down the heart. If the heart can not be properly slowed the body cannot rest. The vagus nerve relies upon acetylcholine to stimulate the sinoatrial node of the heart to normalize the heart rate.
10. Large Pupils (“blind as a bat”):
Pupil size is a function of the balance between the sympathetic nervous system (large pupils) and parasympathetic nervous system (small pupils). Suboptimal acetylcholine levels upset this balance. When the balance is upset, the sympathetic nervous system overrides the parasympathetic nervous system, resulting in large pupils. Large pupils often cause light sensitivity and difficulty focusing.
If you have some of these symptoms and yet you have not been poisoned, you could be dealing with less than optimal levels of acetylcholine, perhaps due to genetics, aging, or inflammation.”

 

[Woundedwarrior]

My experience of people with ME certainly isn't 'mad as a hatter' or even particularly emotional liability, though it can happen (if only because of feeling chronically exhausted?). There's the normal range of mental health conditions in the ME community just as there is in the healthy population - given we are living with a devastating disease I think we are all remarkably ok in terms of mental health -just fogged, poor concentration, memory may not be brilliant etc. I've not noticed large pupils and think that would be quite obvious when people are checked by doctors, sensitivity isn't just to light, it's to sound, touch, taste, movement etc. PEM is characteristically delayed by 12-24 hours, and also characteristically multi symptom and includes 'feeling as though you have flu' or malaise. Having said that some find TVNS helpful. Where is the low blood volume explained? And while this could be part of a much bigger problem there are other theories about how and why the vagus nerve is impacted. I think the theory is interesting but not something to get particularly focussed on? (I'm not a doctor or a research scientist, just someone with the disease).

 

[spark_matter]

Acetylcholine iirc is an amino acid based neurotransmitter, so there may be a connection to metabolic pathway stuff? It doesn't quite explain all of it but may be a part of the overall picture.

 

[Raba]

Thanks for your thoughtful comments. The names used above in parenthesis are for nemonic purposes only, so ”mad as hatter” for example is not literal. But many PWC have milder versions of all of the above symptoms except for 3 and 10. That is noteworthy. The idea that PEM can be caused by reduced Acetylcholine is very interesting. That in light that issues with Acetylcholine have been repeatedly identified in ME/CFS. Some researchers have tried medicines that inhibit the breakdown of Acetylcholine. They found that is helpful. For example with POTS symptoms. Please kindly see:

Mestinon Moves the Needle on ME/CFS in Exercise Study - Health Rising

An unusual one-shot, proof of concept Mestinon exercise trial in chronic fatigue syndrome stopped the energy drain and increased peak energy production.

www.healthrising.org

I do not believe we have full anticholinergic syndrome. However our symptoms have a strong correlation to reduced Acetylcholine conditions. I have had ME/CFS and POIS for 30+ years and I never tried Phosphatidyl Choline, a supplement that increases Acetylcholine. I was wondering if fellow PWC had.

 

[RisingStar]

My clinical symptoms were the result of Chlamydia psittaci a bacterial infection - Yes Phosphatidylcholine supplement was one of the supplements advised to repair the damaged cell membrane caused by the pathogen. If anyone is interested Garth L. Nicolson, Institute for molecular medicine his life work about cell membrane and the treatment.

 

[ruanmalan]

My acetylcholine drops easily to very symptomatic levels, it has been my worst problem at times. I need to be careful with anticholinergics like antihistamines, there are many.

I use Alpha GPC a lot and it often makes a big difference to raise acetylcholine. Try it if you havent yet.

I have had to learn many somatic exercises for my vagus nerve to not be in dorsal stuck state, but they do work.

 

[Raba]

My acetylcholine drops easily to very symptomatic levels, it has been my worst problem at times. I need to be careful with anticholinergics like antihistamines, there are many.

I use Alpha GPC a lot and it often makes a big difference to raise acetylcholine. Try it if you havent yet.

I have had to learn many somatic exercises for my vagus nerve to not be in dorsal stuck state, but they do work.

Thank you for your reply Ruanmalan. Could you please elaborate on what you experience when you say your symptoms of low acetylcholine get worse? What do you experience?

 

[ruanmalan]

Thank you for your reply Ruanmalan. Could you please elaborate on what you experience when you say your symptoms of low acetylcholine get worse? What do you experience?

Hi @Raba
What I experience as low acetylcholine feels like my brain comes to a standstill, and its ability to command my body, and that something it needs to function is missing.
I then feel brain fog as very poor drive and ability to do anything, poor concentration and memory.
I feel a kind of fatigue where I lack the energy to try to do anything
My digestive system would also come to a standstill I used to be very dependent on amino acids because my body wouldn't digest proteins much, and would need to be very careful with constipation.
My eyes were so dry that surgeons and optometrists kept trying different things with limited success.
My orthostatic hypotension would be worse too.

Since I started reading up on anticholinergics and avoiding them whenever possible, and the next day always following up with Alpha GPC and amino acids, I haven't really struggled with any of the above nearly as much, it certainly hasn't fluctuated as much.

I also seemingly have a viral based, and persistent microclot involving, ME/CFS that has over time responded to a persistent detox regiment and NO stimulation for microcirculation and anti-clotting and anti platelet-aggregation supplements like Turmeric and Dan Shen.
That ME/CFS also amongst other things has similar symptoms for me, but those have been a much slower cycle to improve.
During my recovery from those the fluctuation with anticholinergics was very marked, very similar across different anticholinergics, and much reduced with taking Alpha GPC.
The ME/CFS brain fog was different in that it was a bit more busy and confused and less passive and kept me awake and sleep would make me even more tired. With the anticholinergics it felt more like I was largely gone and struggling to return.

 

[Katherine Autry]

Anyone supplementing with Phosphatidyl Choline?

Symptoms of Anticholinergic Syndrome:

From:https://vagusnervesupport.com/top-ten-symptoms-low-acetylcholine/

“1. “Brain Fog”, Poor Short-Term Memory:
Acetylcholine is the neurotransmitter needed by the neurons of the brain to communicate with each other. Low acetylcholine causes difficulties with cognition, “brain fog”, and mental fatigue.
2. Fatigue, Especially Fatigue That Worsens With Exertion:
Acetylcholine is required by the peripheral nervous system allowing muscles to work. Insufficient acetylcholine levels result in muscle weakness that worsens with exercise or exertion. The muscles may work for a while, then exhaust their supply of acetylcholine, leading to extreme fatigue.
3. Constipation / Gastroparesis (“can’t poop”):
The vagus nerve uses acetylcholine to assist every aspect of digestion including peristalsis (movement of food or stool through the digestive tract). Stomach acid production, the opening of the pyloric sphincter at the bottom of the stomach, gallbladder function, some pancreatic function, and opening of the Sphincter of Oddi (which allows bile and pancreatic enzymes to pass into the intestines). Therefore, low acetylcholine levels are especially detrimental to the digestive tract.
Because the vagus nerve is such an important part of the digestive tract low acetylcholine levels can be especially detrimental. Chronic constipation and/or gastroparesis. are very common symptoms of low acetylcholine.
Poor digestion and poor absorption of critical nutrients are also common symptoms of low acetylcholine potentially leading to malnutrition.
4. Dry Eyes (“dry as a bone”):
Normal tear production is a process of our autonomic nervous system. Acetylcholine is required by the lacrimal gland to produce tears. Acetylcholine is also used by the nerves to tell our bodies when to produce tears. When levels of acetylcholine are low, dry, painful eyes can result. Dry eyes due to insufficient acetylcholine are resistant to conventional dry eye treatment unless acetylcholine levels are restored.
5. Orthostatic Hypotension:
Suboptimal acetylcholine levels can cause low blood pressure when standing, causing dizziness and weakness.
6. Flushing (“red as a beet”):
Patients with low acetylcholine often experience episodes of flushing (redness) on the face. The neck and other parts of the body may also appear flushed. It is common for flushing to be misdiagnosed as rosacea or mast cell activation.
7. Emotional Instability (“mad as a hatter”):
People with low acetylcholine levels often suffer from the inability to cope with their emotions. Their emotional state can be unpredictable.
8. Chronic Inflammation:
Acetylcholine is needed by the vagus nerve (the anti-inflammatory pathway of the body). Low levels of acetylcholine contribute to consistently high inflammation which can cause pain, atherosclerosis, fatigue, hypercoagulation (easy blood clotting), and premature aging. Chronic inflammation is an often overlooked symptom of low acetylcholine which results in accelerated aging.
9. Fast Heart Rate (Tachycardia):
The parasympathetic nervous system is the body’s “rest and digest” system. When levels of acetylcholine are insufficient, the vagus nerve no longer slows down the heart. If the heart can not be properly slowed the body cannot rest. The vagus nerve relies upon acetylcholine to stimulate the sinoatrial node of the heart to normalize the heart rate.
10. Large Pupils (“blind as a bat”):
Pupil size is a function of the balance between the sympathetic nervous system (large pupils) and parasympathetic nervous system (small pupils). Suboptimal acetylcholine levels upset this balance. When the balance is upset, the sympathetic nervous system overrides the parasympathetic nervous system, resulting in large pupils. Large pupils often cause light sensitivity and difficulty focusing.
If you have some of these symptoms and yet you have not been poisoned, you could be dealing with less than optimal levels of acetylcholine, perhaps due to genetics, aging, or inflammation.”

It is certainly worth a try. Safe and affordable. Interesting about the dry eyes.