How to balance methylation and sleep?

[bpcat]

New here! Thanks to 23andme and Freddd and Rich’s protocol I’ve been healing! (Was bedridden at one point, severe PEM, etc.) I’m using the deadlock Quartett, have followed @ahmo great guide (thank you)!

The issue is that when I take enough methylfolate/B12 to feel really symptom free, I have anxiety and trouble sleeping. So then I start to feel horrible with lack of sleep (and I never have anxiety otherwise). I’ll take Niacin every 15-30 min, and slowly back down the methylation, and the anxiety goes away and I sleep deeply again. But then I go too far and all the pain, lack of energy, light/noise sensitivity returns, etc.

I’m hetero for COMT, so use mostly hydroxo and adeno B12, but still seem to need methylcobalamin. Potassium and magnesium help with anxiety, but never truly eliminate anxiety and insomnia. Really, it’s when I ramp up B12 and/or methyfolate, I feel great but then can’t sleep. And only Niacin seems to get me back to a deep calm and sleep.

What am I missing? I feel so close. But this yo-yo cycling is exhausting! Does it just take a while to get the balance right? It’s been maybe 5 months of up and down. And is it really healthy to take Niacin to slow methylation just to ramp it back up again?

Thanks!!!

 

[Learner1]

How are your amino acids? B2, B6, B1, and molybdenum?

Using a "canned" protocol is a recipe for trouble. Rich's protocol is a guess, like "one size fits all" pantyhose, and Freddd had some unique genetic challenges that msfe him react differently to what might work in other people.

The best thing to do is to get a comprehensive nutrient test, like a Genova Diagnostics NutrEval and build a protocol that's right for you and not someone else.

And, as methylation can mobilize toxins, understanding your level of toxicity and addressing that properly, if necessary would be wise.

 

[bpcat]

Thanks @Learner1 ! That’s a good point to do some more testing. I’m not against it, I’m just currently looking for a MTHFR literate doctor, and hoping I could order the tests then and have him/her help evaluate the results. (Each doctor seems to have their favorite set of tests and I don’t want to order a test just to have a doctor recommend a different test.)

I’m taking 4mg B1, 50mg B2, 30 mg B6/P5P, 75 mcg molybdenum each day (seeking health).

B12 seems known to cause insomnia. So how do people balance methylation and insomnia?!

 

[Mary]

B12 seems known to cause insomnia. So how do people balance methylation and insomnia?!

Actually, I think it can go either way. A B12 deficiency can cause insomnia too.

I take methylcobalamin and methylolate, I need them both. I do take niacin, but only at night before bed and in the middle of the night, and it does help me with sleep. If I take it during the day however, it makes me tired. So for me the timing is very important.

@Learner1 has a good point, Nutreval testing would be a very good way to go.

Also, I'm sure you know that sleep, or, rather, lack thereof, is a huge problem for most people with ME/CFS. I take a cocktail of amino acids and herbs which help with sleep. I can't tolerate sleep meds and would rather avoid them anyways. Also magnesium is very important for sleep. I learned this year from hair analysis that my calcium/magnesium ratio was very badly skewed in favor of calcium, and when I cut out my calcium and increased my magnesium (at night of course!) I started sleeping better. So there are a lot of factors involved with sleep and several threads about it too, you might do a search and check them out.

 

[bpcat]

Thank you @Mary! Yes I’ve found taking niacin a couple hours before bed and then in the middle of the night really helps, but not during the day. I’ve upped my magnesium quite a bit because I found I was always worse if I reduced it. So now I take it in the morning, throughout the day, with sprays, the calming magnesium powder before bed, and an Epsom salt bath every night. It really helps with muscle pain and sleep.

Sleep was always easy for me until I got sick, and just since discovering Niacin have i really slept well again! I seem to not do well with melatonin, even tiny amounts, and other herbal remedies don’t really touch the tired but wired feeling I can get with B12 and methylation.

I’ll peruse the forums again for sleep recommendations and look at a nutreval test. Thanks!

 

[PennyIA]

I've found that I really couldn't take any b vitamins after 10am... taking them earlier in the day helped me with a lot of my sleep issues.

 

[bpcat]

Good point @PennyIA! I will try having them earlier. I’ve pushed methylfolat and B vitamins earlier, so now they’re spread out 7am-1pm, but will try 10am. Thanks!

 

[Learner1]

(Each doctor seems to have their favorite set of tests and I don’t want to order a test just to have a doctor recommend a different test.)

I've been to conferences with doctors abd the NutrEval is by far the most comprehensive test. An OAT test would be helpful second choice.

I’m taking 4mg B1, 50mg B2, 30 mg B6/P5P, 75 mcg molybdenum each day (seeking health).

Everyone is different, but you may not be taking enough of these. By contrast, I take 600mg B1 (benfotiamine), 250mg B2 (R5P), 350mg P5P, and 1-2mg molybdenum a day. Plus 2g TMG, 800mg magnesium malate, and 200mg potassium.

I'm not saying to do what I do, but just illustrating that there's a wide range of doses. I've had all sorts of symptoms and worked with 2 excellent doctors and lab tests to fine tune my protocol so that I only have positive effects now.

B12 seems known to cause insomnia. So how do people balance methylation and insomnia?!

You shouldn't have insomnia if you have a balanced protocol.

Niacin will reverse methylation, but that's not necessarily the right answer. You need to be having the MB12 working in the methionine cycle, then making glutathione, which can mobilize toxins, and then the transsulfuration pathway needs to be working to flush all of it out.

If that's not all happening, you might have insomnia or other symptoms.

My doctor has me taking B6 and B2 at night, B1 in the morning and other Bs between 1 and 6pm.

 

[bpcat]

Thank you for all of that @Learner1. Obviously although I’ve improved a lot, it’s time to get some more testing and expert help based on the results. Would your doctor be available for Skype appointments? My biggest challenge right now is finding a doctor that has a lot a of experience with CFS/ME and MTHFR.

You’re right, my pathways are probably blocked somewhere else - possibly transsulfuration - and I need to figure that out. Dr. Ben Lynch’s Strategene report has been helpful, but I’m really not sure how to proceed, and the trial and error isn’t going as far as it was before!