Choline supplement causing daily PEM even after stopping?

[SpinachHands]

Moving away from my original thread where I asked about choline supplements as I need urgent help with my partner.

For two days they took a choline and inositol supplement (400mg of each in one tablet) and they started getting PEM so they stopped. It's now day seven with daily PEM hitting several hours after waking, around the time they were taking the choline.

They haven't had PEM in around 4 months. They are fully bedbound since December, no activity. They are terrified this has undone nearly a year of rest, as their ME had been slowly improving. They had tried taking daily potassium for the past three days, it's seems to minorly improve the PEM but its still not stopping. They also increased their ketotifen dose a few weeks ago, can that play into this? It seemed to be going ok and has been the main source of their ME improving until now.

Why is this happening? How do we stop or undo whatever damage it's caused? I can't find any mention of choline causing PEM, just general fatigue issues.

 

[Hope_eternal]

Hi Spinach,

I came across this post today and wanted to share it with you in case you hadn’t seen it .

Hi, everyone. I want to write about my difficult fight to overcome horrible side effects of choline.

I started to take choline bitartrate about a month ago. It seemed to help at first, but after a few days I started to have trouble sleeping. I gave up choline right away, and yet my insomnia...

https://forums.phoenixrising.me/threads/read-this-before-trying-choline.92336/

 

[SpinachHands]

Severe daily PEM is still ongoing and worsening. It's been eight days now, I don't know what to do.
Tried increasing potassium, B1 and niacin, but nothing. Can anyone please help

 

[Alix]

Hey Spinach,

Have you guys tried nicotine patches or oral nictotine pouches? I’ve found that if I allow too much parasympathetic tone that I get stuck in a low energy pem loop.
The choline supplements may be having a strong parasympathetic response that doesnt allow for nerve stimulation from weakened sympathetic tone.

Nicotine interacts with nicotinic acetylcholine receptors and increases sympathetic tone and raises blood pressure and HR. So when I find that I am feeling stagnant and in a pem loop, nicotine can be that sympathetic kick for me to return to baseline energy if I’ve been in a parasympathetic swamp. And its easy to dose because you can feel when to take it off (avoiding nic high) and maintain good autonomic balance.
- Alex

 

[SpinachHands]

Hey Spinach,

Have you guys tried nicotine patches or oral nictotine pouches? I’ve found that if I allow too much parasympathetic tone that I get stuck in a low energy pem loop.
The choline supplements may be having a strong parasympathetic response that doesnt allow for nerve stimulation from weakened sympathetic tone.

Nicotine interacts with nicotinic acetylcholine receptors and increases sympathetic tone and raises blood pressure and HR. So when I find that I am feeling stagnant and in a pem loop, nicotine can be that sympathetic kick for me to return to baseline energy if I’ve been in a parasympathetic swamp. And its easy to dose because you can feel when to take it off (avoiding nic high) and maintain good autonomic balance.
- Alex

Thanks for your reply. Unfortunately they already have issues with dysautonomia and the PEM actually seems to be flaring up a sympathetic response, so on top of the PEM they have an increased HR, high temperature, and bad adrenaline dumps/anxiety. It's tricky having both as anything that would boost energy, especially something as intense as nicotine patches, would worsen the sympathetic overload.

 

[ilivewithcfs]

Have you tried inositol? I had exactly the same problem, and inositol fixed it for me.

 

[SpinachHands]

Have you tried inositol? I had exactly the same problem, and inositol fixed it for me.

Thanks I've been looking at your recent posts actually, unfortunately the supplement they took was choline with inositol, so we actually don't really know which has caused the problem.

 

[SpinachHands]

Ok so interestingly their private doc has said this sounds more like a mast cell reaction than PEM, which makes sense since there's not really been any exertion involved, and why it seems more inflammatory with the spike in HR and temperature. Reading on the MCAS subreddit a lot of people say their MCAS flares can feel identical to PEM. They also severely react to a lot of medicines, but never quite like this... It also doesn't explain why the reaction is still happening despite stopping the choline, apparently most mast cell flares only tend to last 3-7 days. Trying some mast cell related treatments in addition to the increased potassium just to see, like vit C and maybe some H1 antihistamines like cetirizine or loratadine, but we are worried about potential reactions, as they did badly when trying cinnarizine not long ago. Also considering getting some quercetin, but again no way to predict how they'll react.

 

[almost]

Severe daily PEM is still ongoing and worsening. It's been eight days now, I don't know what to do.
Tried increasing potassium, B1 and niacin, but nothing. Can anyone please help

You and your partner are certainly warriors. The body is just Sooooo complicated, and you are moving your way through this admirably. Unfortunately, there always seems to be unplanned retreats.

My only thought here, is maybe it is the form of choline that may be the problem. Here is an excerpt from a Chris Masterjohn article:

The Three Most Important Forms of Choline
Before we dive in, here are the three most important forms, all of which occur in foods, and all of which are also sold as supplements:

• Betaine or trimethylglycine (TMG) is the best form to support methylation. Technically it isn't a form of choline, but rather a substance that we make from choline in order to use in the methylation process.
• Phosphatidylcholine is the best form of choline to support liver and gall bladder health and to support fat digestion.
• Alpha-glycerophosphocholine (alpha-GPC) is the best form of choline to boost levels of acetylcholine. Acetylcholine is a substance that supports cognitive performance under sustained, focused attention; learning and memory; relaxation (it is used in the "rest and digest" parasympathetic nervous system, the opposite of the "fight or flight" response), and muscular power
  ...
  
  
• If you have fatty liver disease, elevated liver enzymes, any issues with your gall bladder, or trouble digesting fat, emphasize phosphatidylcholine.
• If you feel like your brain doesn't perform well when you need to focus for long periods of time, like you're always in a fight-or-flight mode, or like your muscles are weak, emphasize alpha-GPC.
• If you feel like none of these apply to you and methylation is your one big issue, emphasize TMG

https://pdfcoffee.com/mthfr-protocol-personalization-by-chris-masterjohn-pdf-free.html

Edit: add second set of bullet points.