Dizziness and POTS may respond to Choline

[halcyon]

@ahmo and @halcyon and whoever else takes choline.. Are you taking betaine too? The study said we are low in choline AND betaine. If I missed this the first time, my apologies.

I'm not. I could try adding it in.

 

[Sushi]

@ahmo and @halcyon and whoever else takes choline.. Are you taking betaine too? The study said we are low in choline AND betaine. If I missed this the first time, my apologies.

I know of one patient who has a genetic error in her choline transporter. This had a really bad effect for her. I don't know if there have been any studies on this, but, for her, working around this problem has made a huge difference for her.

 

[Helen]

Its been known that here is an acetylcholine problem in CFS (not an ME cohort nor POTS cohort) since about 2000 based on the research of Vance Spence.

Interesting. I searched Vance Spence in PubMed and there where several articles/studies on this topic. Re an acethylcholine problem in CFS, do you know in what way? COMT-mutations have been found to be more common in PWME and with lack of that enzyme there might be a problem with break-down of acethylcholine. A possible connection?

BTW, my doctor prescribes choline to me.

 

[sillysocks84]

I wonder how many pots or pwmes have tried supplementing choline and betaine and or taking mestinon. It doesn't seem to be common knowledge, but if we are all low in choline it seems like it'd be one of the first go-to supplements...

@Sushi so she was helped by supplementing and or medication? That's interesting. I guess you would have to pay a lot of money to find out if you had this genetic issue?

 

[halcyon]

I wonder how many pots or pwmes have tried supplementing choline and betaine and or taking mestinon. It doesn't seem to be common knowledge, but if we are all low in choline it seems like it'd be one of the first go-to supplements...

There is at least decade old papers in the literature discussing use of pyridostigmine in treating POTS so I think it's pretty well known, it might just not work very well relative to the side effects. There are also a couple trials of galantamine in CFS that probably weren't very impressive either.

 

[Sushi]

@Sushi so she was helped by supplementing and or medication?

I PMed you. Unpublished research so can't post about it.

 

[alex3619]

Re an acethylcholine problem in CFS, do you know in what way?

He directly measured an exceptionally prolonged acetylcholine response time.

 

[Wayne]

I wonder what the best source of choline would be?

Egg yoks are rich in choline. I try to remember to put raw egg yolks in my smoothies, as I tend to feel better when I do. I'm going to try to be more consistent with it, and even add more to see if it makes a difference for my major POTS issues.

I also recently started eating more sauerkraut, which is supposedly very high in choline. With it being fermented, it might be more easily assimilable, especially for some of us who have fragile digestion.

 

[Wayne]

The study said we are low in choline AND betaine.

One of the most noticeable improvements I ever made in memory and cognitive function was when I started taking digestive enzymes. I wonder now if the betaine I started taking improved my choline digestion, leading to higher levels of the brain neurotransmitter acetylcholine.

 

[sillysocks84]

Egg yoks are rich in choline. I try to remember to put raw egg yolks in my smoothies, as I tend to feel better when I do. I'm going to try to be more consistent with it, and even add more to see if it makes a difference for my major POTS issues.

I have eaten my fair share of raw cookie dough and never got sick, have you ever been sick from egg yolk? What is the probability of getting salmonella?

 

[skwag]

From the conclusion of Mechanism of choline deficiency and membrane alteration in postural orthostatic tachycardia syndrome primary skin fibroblasts

The cellular characteristics of the POTS
fibroblasts de-scribed here represent the first cell model of CTL1/
SLC44A1 deficiency in which choline transport, general
lipid homeostasis, and mitochondrial function were im-
paired. Choline treatment of the POTS fibroblasts could
restore CTL1/SLC44A1 expression and choline uptake
and offer a promising option for treating this patient. Be-
cause this is the first POTS study,it cannot be applied to
other POTS cases. Whether POTS generally consists of
choline and betaine deficiency and whether it has reduced
choline transport and membrane function need to be firmly
established in the future. The choline deficiency in
this patient may be a result of an impaired supply of dietary
choline by intestinal CTL1/SLC44A1 transporter (10, 43).
However, further experiments on intestinal cell choline
metabolism are needed to confirm this hypothesis.

Would this mean it isn't caused by lack of choline but by problems utilising it? So supplementation is pointless. Or is it a percentage type of thing, so you can only utilise 30% so you need 3x the intake?

I have the same question. So what exactly is this "promising option for treating this patient" in the above excerpt?

 

[halcyon]

If I understood it correctly, introducing choline caused an increase in the activity of the choline transporters.

 

[skwag]

If I understood it correctly, introducing choline caused an increase in the activity of the choline transporters.

Here's another excerpt:

Interestingly, choline supplementa-
tion in the cell culture medium increased the amount of
choline transporter (significantly after 5 mg/L; Fig. 1B)
and choline uptake (at both 2.5 and 5 mg/L choline) into
deficient POTS fibroblasts (Fig. 2C).
The increase in choline uptake after 2.5 mg/L choline likely resulted from
translocation of CTL1/SLC44A1 from intracellular com-
partments to the plasma membrane because the total
CTL1/SLC44A1 content did not change significantly.

Any guesses on how much choline would be required for human supplementation based on this in vitro result?

 

[Dufresne]

I think the cheapest way of getting choline into one's system is a regular old phosphatidylcholine supplement. Although the PC doesn't survive digestion, you still get a hefty dose of choline.

Choline acts as a stimulant for me, especially in concert with an alkalizing regimen. It clears my brain fog, and significantly enhances cognition. Methylphenidate and alkalinisation achieves the same effect. These combinations also raise my PEM threshold considerably. Unfortunately it seems they accomplish this by stimulating some mystery substance in short supply. Persisting with this for weeks has gotten me into trouble. If I knew what was being exhausted, I'd know what was causing my PEM.

 

[sillysocks84]

Unfortunately it seems they accomplish this by stimulating some mystery substance in short supply. Persisting with this for weeks has gotten me into trouble. If I knew what was being exhausted, I'd know what was causing my PEM.

I'm sure somebody would know how it's metabolized and broken down and what is effected in this process. You could seek out researchers and email them. I have done this before myself and 50% of the time get a response. Who knows? Maybe you'll spark something of importance.

 

[skwag]

Any guesses on how much choline would be required for human supplementation based on this in vitro result?

I'll try to answer my own question here.

The culture medium concentrations that were tested are 2.5mg/L and 5mg/L, which converts to roughly 25 uM/L and 50 uM/L. ( uM = micro Mole , The molar mass of choline is roughly 100g/M )

The normal serum concentrations of choline are between 6 and 15 uM/L.

Based on the in vitro result, we might try to push serum concentrations up towards those 25 and 50 numbers. But this looks like it would require a huge dose. In this paper, Effect of Oral CDP-Choline on Plasma Choline and Uridine Levels in Humans, the largest dose of citicoline given to a subject was 4000mg. In this case, the choline serum concentration was raised from roughly 11uM/L to 18uM/L.

Lower doses were also tested and from the look of the graph in the paper, peak serum concentration is proportional to dose. So we might expect an 8000mg citicoline dose to give us a 25uM/L serum concentration.

We are talking crazy amounts here! Apart from this study, I've only seen citicoline trialed at doses of 2000mg and below, so there is no information on safety I'm aware of. Without more information, this is not doable, especially considering the slim chance that our POTS has the same cause as the case that was studied.

I'll continue to trial citicoline at much lower doses. Hopefully it'll just take a bit more time.

 

[sillysocks84]

@Wayne I put two eggs in my normal smoothie this morning. Pretty good! How many do you use?

 

[Dufresne]

I'm sure somebody would know how it's metabolized and broken down and what is effected in this process. You could seek out researchers and email them. I have done this before myself and 50% of the time get a response. Who knows? Maybe you'll spark something of importance.

It's pretty tricky as these substances can really light up the whole brain. For sure it's some kind of anti-inflammatory hormone. It's the same one, without a doubt, that deals with biotoxin inflammation. Thus I believe it's toxins and the inability to manage the inflammation from them that leads to PEM. It can also cause shortness of breath, burning muscles, and various sensitivities. My best guess is something along the lines of what Shoemaker suggests: MSH, VIP, whatever. I've just ordered some melanotan II (MSH) to see how that goes. It's interesting that Shoemaker insists patients follow a step by step protocol to reduce inflammation before benefits from something like VIP can be seen. In my case I had to address terrain (pH/oxidation) before I could enhance the other system and raise my PEM threshold. It's my opinion too few people understand the importance of pH in oxidative stress and reduction of disease, and this should be an obvious one. Certainly there are folks on the forum who've raised their PEM threshold by simply addressing pH.

But all this is tangential to the subject of this thread. Hopefully something will come of my experimentation and I'll be able to report back something really interesting on a new thread.

 

[sillysocks84]

@Dufresne if you make a new thread link it to this one please! And did you first test your ph? I tried finding ph tests at my walgreens in the past, they don't sell them but said try using the pool kind. Is this information reliable? I do feel my ph should still be tested.

 

[Dufresne]

@Dufresne if you make a new thread link it to this one please! And did you first test your ph? I tried finding ph tests at my walgreens in the past, they don't sell them but said try using the pool kind. Is this information reliable? I do feel my ph should still be tested.

PM sent.