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Mechanism of choline deficiency and membrane alteration in POTS


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5 hours ago, Muon said:

I know the patient in this study and indeed, being treated with choline made a big difference though dosing took a lot of experimentation. This person had a specific genetic profile involved so it is probably not a helpful treatment for those with normal choline metabolisation. 

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  • 2 months later...

Has anyone else tried choline?  I started it in early December 2020 and it's been life changing for me.  

I have POTS and CFS.  I take propranolol 10mg 3x/d, drink 1-2L Trioral daily, did nearly a year of antivirals.  Midodrine was of no help. I've tried all kinds of meds for pain.  I've taken a number of supplements.  Choline has been the most impactful and longest lasting effect so far (tbf it's been about 4 weeks).  I have gone from temperature sensitive and serious PEM to being able to swim outside in Florida in 50 degree weather (in a heated to 82 degree pool) with a wet suit with no issue.  I can move vigorously and not get PEM.  I still have POTS symptoms, but am hoping to minimize that by now being able to exercise.  I'm on day six of swimming daily and I feel great and can't wait to go again today.  I've noticed positive changes in mood, digestion, brain fog, pain, and slept much better (until I increased the dose, see below). 

My understanding is that choline is a necessary ingredient to making acetylcholine, which is the primary neurotransmitter for the parasympathetic NS.  So taking it as a supplement would increase the amount of acetylcholine available to the body.  This is similar - though different mechanism of action - to Mestinon, an acetylcholinesterase inhibitor.  My doctor has been reluctant to try Mestinon as it's primarily for myasthenia graves, even though it's in the POTS literature.  I'm on the internet doing research on diagnostic testing to discuss with my PCP at my appt this week and saw this post and had to comment.  

For some more information, there is this article by Dr. Milner about his Acetylcholine Protocol for patients with dysrhythmias: https://www.townsendletter.com/FebMarch2013/milner0213_2.html

He mentions it also being applicable to patients with ANS imbalance:

"Several noncardiac indications for MAP also exist, including anxiety, hyperactivity, reactive attachment disorder, PTSD, and other deficits of neurotransmitter and ANS balance."

I found his comment about nature not having a beta blocker to be very interesting:

"There are no naturally occurring beta blockers," Dr. Milner often says in reference to the use of beta-1 adrenergic receptor blockers (beta blockers) in the treatment of arrhythmias and in control of the heart rate. "Nature doesn't block receptors," Milner asserts. "It augments antagonist pathways. Acetylcholine is 'nature's beta blocker.'"

This article gives more information as well as a dosing schedule.  

FWIW, I've been taking choline daily since 12/9/20.  I started out with 300mg and noticed an effect after two doses.  I then took 300mg 3x/d until I found this Milner Information and have been taking 600mg twice daily (600mg three times per day made for poor sleep, so I'm skipping the third dose).  I am working on getting vit B5 and a bulk source of choline.  You can get choline from dietary sources as well as sunflower lecithin.  From what I have read from other users, the alpha GPC version is the most bioavailable and crosses the blood brain barrier.  The dietary sources do not seem to give the same effect if one needs choline for treating an issue.  

I completely understand that we are each unique and different.  I also know how much I struggled and searched for any help.  I hope that this information can be helpful to someone else.  I know that we've all bought the latest wonder supplement to be disappointed.  I can't tell you who is going to benefit, but I paid $20US for a bottle of Alpha GPC choline online and it was the best $20 I've spent on my health yet.  I truly hope that it can help many of you as well.  

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  • 5 months later...

@brainchild, I've been meaning to ask you whether this continued to help. I know you wrote a reply to me describing how treatments tend to work for you for a while and then peter out. I am hoping this one is still working for you.

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