Read this before trying choline.

[linusbert]

sadly i do not know.

maybe the IV choline is too much in dosage or too fast injected.
IV solution also needs to have right mineralization like nacl in it. but if its a packaged product it should be fine. also your doctor should know how to mix it.

 

[SpinachHands]

Just to jump in this thread, my partner started a Choline with Inositol supplement (containing 400mg of each) on Monday, by the afternoon they were hot, shaky, and felt like their ME was suddenly way worse. Like sympathetic activation combined with PEM. Yesterday they woke up ok but started feeling like that again after a few hours, and after taking the supplement again it got way worse. It starting before taking it was like they had PEM from taking it the previous day.
Now thinking back, they normally sleep better on anticholinergic stuff, anything else and they get sympathetic flare ups in the night. So piecing this together I'm wondering if their choline is already too high, and that could be causing a lot of their issues, so looking into anticholinergics now- may try L-Carnitine too (not acetyl carnitine)
Today they didn't take the choline but still got the sympathetic/PEM feeling, if a little lesser, and slept pretty bad with sympathetic symptoms waking them up. Hopefully should recover within a week or so, but still trying to figure out what caused such a strong reaction. Are there blood tests for choline levels?

 

[ilivewithcfs]

Update

About a week ago I started taking inositol 1500 mg in the evening, and my sleep has been perfect ever since. Couple of days ago I added 500 mg of inositol in the morning, and I started to feel better overall. I'm even less anhedonic than usual (anhedonia is a very difficult symptom to treat). I hope everything stays that way.

 

[ilivewithcfs]

Are there blood tests for choline levels?

I'm not aware of existence of such tests, but if your partner is feeling worse on it, then they should probably give it up. I found inositol to be the most effective in counteracting side-effects of choline.

​

 

[JES]

I would suggest play it safe and first figure out whether it was the choline or inositol that made your partner's nervous system rev up @SpinachHands . I took inositol many years ago and I reacted badly to it like I do to most supplements. It made me sleep worse as well from what I reckon. And yep, that's ME/CFS, the above person has success with something that another person can find worsening their condition.

 

[pamojja]

I would suggest play it safe and first figure out whether it was the choline or inositol that made your partner's nervous system rev up ... And yep, that's ME/CFS, the above person has success with something that another person can find worsening their condition.

Also, in ME/CFS always play save with the initial dose. Always start with the lowest possible doses and increase very slowly only. In this case, it would have been by taking only a fraction of the supplement pill or capsule.

 

[SpinachHands]

Getting a bit worried as yesterday they didn't take the choline/inositol supplement and they still got the same kind of feeling, like they had PEM from when they took it the day before. All day they were at a bad level that they haven't been in a good while, and today it's still like they have very bad PEM. Is it just a waiting game for their levels to balance out? They only took the supplement for two days, and haven't had PEM like this in about 4 months
@linusbert you seem to know a lot about choline, any ideas why it might cause PEM? Thank you

 

[linusbert]

maybe too much acetylgroups or to much methylgroups.
too much acetylgroups can be buffered with either L-carnitine or L-carnitine-fumarate or any other carnitine which doesnt supply a acetylgroup, like acetylcarnetine.
if this thesis is true, acetylcarnitine will make it worse, and l-carnitine(-fumarate) will make it better.

if its too much methylgroups then glycine can act as buffer and make it better.

choline does provide both methylgroups and leads to increased acetylation and will become acetylcholine at some point.

another possibility could be too less vitamins which drive methylation , that would be primarely B12, b6, folate, but the other vitamins come close. as b12 needs b2 and iodine and then b1 etc.
and then also demand for potassium and phosphat go up.
if this is the case then providing multivitamine and plenty potassium and phosphor will help.

there could be multiple things true at once thou.

 

[SpinachHands]

maybe too much acetylgroups or to much methylgroups.
too much acetylgroups can be buffered with either L-carnitine or L-carnitine-fumarate or any other carnitine which doesnt supply a acetylgroup, like acetylcarnetine.
if this thesis is true, acetylcarnitine will make it worse, and l-carnitine(-fumarate) will make it better.

if its too much methylgroups then glycine can act as buffer and make it better.

choline does provide both methylgroups and leads to increased acetylation and will become acetylcholine at some point.

another possibility could be too less vitamins which drive methylation , that would be primarely B12, b6, folate, but the other vitamins come close. as b12 needs b2 and iodine and then b1 etc.
and then also demand for potassium and phosphat go up.
if this is the case then providing multivitamine and plenty potassium and phosphor will help.

there could be multiple things true at once thou.

I've ordered some L-Carnitine so hopefully that helps. I still don't get why it's coming as PEM, like starting up at a consistent time every morning? It's three days without it now and they're still waking up ok then getting hit with PEM a few hours later that lasts all day

 

[ilivewithcfs]

I've read dr. Myhill referring to choline as an "on-switch of the brain". She wrote, that it increases dopamine. So it's not that surprising, that in some PWME choline can cause trouble.
My trouble with choline continued even after giving it up, until I found inositol.

 

[linusbert]

I've ordered some L-Carnitine so hopefully that helps. I still don't get why it's coming as PEM, like starting up at a consistent time every morning? It's three days without it now and they're still waking up ok then getting hit with PEM a few hours later that lasts all day

you started a new thread about the choline, i suppose the l-carnitine did not bring any improvements.
you might wanna add that information to your other thread so people do not make the same advice again.

 

[EddieB]

@linusbert
@ilivewithcfs
Hello, hoping to restart this discussion....
First off, thank you all for the information posted, very helpful.
I believe I’m in a situation where I might have lots of choline but am unable to utilize it. I found that I have a genetic defect with chAT/ choline acetyltransferase. If I understand this correctly, the process of producing acetylcholine is being disrupted. Therefore rather than trying to increase choline, is there a way to try and make use of what’s already there?
Has anyone checked to see if they carry this chAT gene defect?

30+ years of me/cfs, with muscle weakness/ fatigue a major problem.
Thanks, Eddie

 

[ilivewithcfs]

@linusbert
@ilivewithcfs
Hello, hoping to restart this discussion....
First off, thank you all for the information posted, very helpful.
I believe I’m in a situation where I might have lots of choline but am unable to utilize it. I found that I have a genetic defect with chAT/ choline acetyltransferase. If I understand this correctly, the process of producing acetylcholine is being disrupted. Therefore rather than trying to increase choline, is there a way to try and make use of what’s already there?
Has anyone checked to see if they carry this chAT gene defect?

30+ years of me/cfs, with muscle weakness/ fatigue a major problem.
Thanks, Eddie

I don't have anything useful to say here, sorry. Maybe someone else does.

 

[EddieB]

I don't have anything useful to say here, sorry. Maybe someone else does.

That’s ok. Thank you for responding.
Interesting though, that inositol improved your choline overload. When I tried inositol on its own, it made me quite sick. But I would guess that taking choline would not go well for me either.

 

[linusbert]

i can only say try some l-carnitine and add all cofactors required for methylation, the most prominent b12,b6,folat.
maybe in your case the acetylated carnitine , acetyl-carnitine might be positive. i'd try both forms.

 

[ilivewithcfs]

Inositol stopped working for me. Insomnia came back and I'm feeling really bad overall. I'm back to being partially bedridden. Very often I don't even have the strength to sit, let alone do anything else.
I'm going to try l-theanine next. If you have any advice on how to get my sleep back, please share.
I also want to note, that I'm already on fluvoxamine and clozapine (these drugs had been keeping my sleep stable for 9 years, until I decided to try choline).
I've never known, that taking one supplement for a couple of days can screw me up so badly.

 

[EddieB]

Inositol stopped working for me. Insomnia came back and I'm feeling really bad overall. I'm back to being partially bedridden. Very often I don't even have the strength to sit, let alone do anything else.
I'm going to try l-theanine next. If you have any advice on how to get my sleep back, please share.
I also want to note, that I'm already on fluvoxamine and clozapine (these drugs had been keeping my sleep stable for 9 years, until I decided to try choline).
I've never known, that taking one supplement for a couple of days can screw me up so badly.

Gosh I’m sorry to hear that. It sounded like you had things sorted out.

I’m learning and know very little about all this, I can only offer opinion and support. It sounds like the inositol depleted something? Also, I believe inositol messes with blood sugar, is there possibly something going on with that?

I was on low dose amitriptyline for several years for IBS (didn’t help but stayed on it to appease the doctor)
then later Mirtazapine. Both had strong effects on sleep, I became dependent even though I didn’t have trouble sleeping prior to use. After weening off mirt, I still needed a tiny crumb of it in order to sleep for a year and a half before I could finally get off it. But what puzzles me is that both act as anticholinergenics at lower doses. I found that the lower the dose, the stronger the effect on sleep. Do the medications you’re on work in a similar way?

 

[ilivewithcfs]

I was on low dose amitriptyline for several years for IBS (didn’t help but stayed on it to appease the doctor)
then later Mirtazapine. Both had strong effects on sleep, I became dependent even though I didn’t have trouble sleeping prior to use. After weening off mirt, I still needed a tiny crumb of it in order to sleep for a year and a half before I could finally get off it. But what puzzles me is that both act as anticholinergenics at lower doses. I found that the lower the dose, the stronger the effect on sleep. Do the medications you’re on work in a similar way?

Thanks for support.
I did notice, that some psych meds I was on did have a stronger effect on sleep on lower doses. I believe clozapine did this for me for 9 years without fail (i take the small dosage of 50 mg).
I've also read that adding low dose of sedating antidepressants (like mirtazapine) can improve sleep. I will discuss my options with my psychiatrist.
Currently I plan to try natural things (like l-theanine and maybe thiamine), if it fails, then I will try psych meds under the guidance of my psychiatrist, and if that fails - i will try ect.

 

[EddieB]

Thanks for support.
I did notice, that some psych meds I was on did have a stronger effect on sleep on lower doses. I believe clozapine did this for me for 9 years without fail (i take the small dosage of 50 mg).
I've also read that adding low dose of sedating antidepressants (like mirtazapine) can improve sleep. I will discuss my options with my psychiatrist.
Currently I plan to try natural things (like l-theanine and maybe thiamine), if it fails, then I will try psych meds under the guidance of my psychiatrist, and if that fails - i will try ect.

I was just messaging with someone on another forum. They said B12 helped reverse their bad effects from choline supplements. Maybe?
If you did end up with mirt, I would suggest starting with a microscopic dose. Like I got down to using the pill splitter and taking little fragments. The withdrawal from higher doses I was on was absolute hell. And never had benefits. Hang in there .

Edit,
“If you did end up with mirt”
I meant if you were using it for sleep aide only.

 

[linusbert]

sorry to hear. get weller soon again.