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panicky and having suicidal thoughts after 2 months of unsuccessfully addressing methyl trapping

fprefect

Ford Prefect
Messages
117
I care about your safety.

I can't say much about the vitamin stuff. When I was first given synthroid it made me super paranoid.

Please keep in touch and say something before you are going to do something.

hi @GONZ0hunter.

thank you for this. i appreciate it.

your synthroid experience sounds very unpleasant. sorry you had to go through that. thanks for the info.

i will try not to do anything drastic. i am trying to address the panic.
 

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
@fprefect I find magnesium very calming. I started it after I felt a bit agitated after starting methylation treatment. I take 125mg twice a day. Others on PR take much higher doses and also use it in footbaths.

Hoping for better days for you.

Sending you love and encouragement.

Best wishes, Andy.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
I send along my compassion. :hug:

If I replace your Berocca Performance with Country Life Coenzymated B Complex, many of my symptoms are identical--certainly the emotional instability, certainly the pain levels, many of the symptoms--and finally understanding that many of my issues most likely had to do with methyl trapping, a couple of months ago I cut back to none, determined to build up little by little, to get to that place of low lower Bs so I could move forward with B-12 supplementation.

But my body had other ideas. Heart irregularities, depression, despair and exhaustion moved in and only began to resolve as I re-introduced the old thing that had worked so well till it didn't. (sort of) In the interim, I tinkered with B2 (as FMN), B6 and B12, Potassium, and though there might have been initial good results, I continued to spiral down. Right to that place where I told my husband and son I felt like walking in front of a truck or driving off the road. Not that I believe I would ever do that. But still.

Yesterday, my (Ok, @Gondwanaland, does DH stand for 'Dear Husband'?!) DH sat down with me and poured over the very careful spread sheet I've been keeping daily for the past couple of months. He was a physics major and understands well the scientific method. His advice to me was: there are too many variables. Go back to the place where you were the most stable.

So, I added another 1/2 B Complex yesterday, and while I was anxious and racy during the day, I was calm and slept better at night than I have in weeks. 2 hours + 3 hours + 1 hour. Wow. (for me) Of course, there was a headache, and my left hand Dupuytrens ached and this morning my sciatica is bothering me. But an emotional center for the moment holds sway.

From where I sit, pain is easier to deal with than all that sleepless emotional stuff.

I have the sense that more of the lower Bs may actually help me tolerate methylation. @Sherpa has certainly commented on this, and I'm sure many others. On the other hand I was jarred out of complacency by all the talk of Vitamin D on this thread. It's actually one thing I am clinically low in. Over the past two months as I bought Fermented Cod Liver Oil, started and stopped it because of stomach upset, I realized yesterday that I'd completely stopped taking my vit D drops. Yikes! Thanks for that. I began with 400 whatevers yesterday, 4 drops. (I have to be careful about how fast I increase anything), so even that may have added to my better sleep/calm last night.

It isn't easy working these issues from the inside out. I really got your house of cards metaphor. I hear that even on your Berocca Performance, you aren't feeling well and I hope you find the combination that supports the methylation that so clearly helps.

Here's to strong foundations, wherever and however we manage to build them.
 

fprefect

Ford Prefect
Messages
117
hi @caledonia.

thank you for your response. sorry about the late and long response. i am not thinking clearly.

band aids sound good.

i am wary of methylation cofactors since they (magnesium, zinc) make symptoms worse that are on Fred's methyl trap list. (ie. confusion / sluggishness, some other things.) i think i have been in a mild methyl trap situation that has seriously built up over 6-8 years due to high folic acid and low b12 intake. Rich's SMP suggests a b12/folate ratio of 5:1. Fred suggests a ratio of more than 1. Ben Lynch suggests about 1.2. my ratio is about 0.2. no one on PR has improved methylation with a ratio like this. i am hopeful the cofactors will have the expected response once i reduce the folic acid so it is lower than the b12. does this make sense?

what other snps do you mean?

thank you for your list of supplements.
  • i am considering 5htp, but it depends on b6, which i seem short on.
  • theanine caused paresthesia, poorer sleep, lower mental clarity and increased allodynia and better stools. i think the methyl groups in theanine resulted in more folic acid being metabolised and using up b12. i don't have any better idea.
  • i might test gaba.
  • magnesium made the panic worse and increased paresthesia.
  • i am considering taurine, but vaguely recall some involvement with magnesium.
  • i take about 2g of potassium gluconate.
  • i take Now Super Omega EPA. i will look into the fish oil you mentioned.
  • i am currently wary of the methylation cycle since zinc (a catalyst for bhmt), b12 and magnesium seem to increase confusion / sluggishness. i don't know if everything else in the methylation cycle will do the same. i could test a toothpick worth of phosphatidyl choline / lecithin, i guess.

i can't think of a better approach than to get stable by reducing methylfolate production via reduced b2. however, this causes chest pain and shallow breathing.

Your SNPs are suggesting that B12 is a worse issue for you than folate. (Unless you also have GST (glutathone SNPs) on the Detox Panel and/or mercury issues.
what do you mean?

these are my detox snps: CYP1A2 164A>C +/-, CYP1B1 L432V +/+, CYP1B1 N453S +/-, CYP1B1 R48G +/-, CYP2C9*3 A1075C +/+, CYP2D6 S486T +/+, CYP2D6 100C>T +/+, CYP3A4*1B +/-, NAT2 R197Q +/-, NAT2 G286E +/-, GSTM1 Unknown due to 23andMe.

i have mercury toxicity, but am dependent on 600mg alpha lipoic acid. i tried reducing it, but energy dropped like a stone. sigh. could this cause sluggishness / confusion?

sorry. i know this is a lot of questions. i haven't been able to read up enough on my own recently.

ps. Thank you very much for your guides. they are a source of hope to me.
pps. thanks. i like Ford Prefect since he doesn't get fazed even when the planet he is on is scheduled for demolition. he always finds a way out. haha .. given this thread's title, my username feels like hubris. :rolleyes:
 

fprefect

Ford Prefect
Messages
117

thanks, @PeterPositive. :)


I would be cautious about trying new supplements when feeling vulnerable. 5HTP, GABA, Vit D and fish oils can be stimulating, so may increase anxiety. (And I think I've reacted negatively to all of these supplements, but I may be unusual.) Just suggesting caution.

thank you, @Bob. i will go low and slow.


3000iu should be enough, if it is not working, don't take more of it. Personally I got depression from this amount. How is your thyroid? Red blood cell count?

@Gondwanaland, i meant i was taking 3000iu vit d before this added mess.

sheesh .. sounds like depression has been lurking waiting to pounce on you and your husband. sounds rough. :hug:

my thyroid results are 2 years old. red blood cell count is from 2008! would issues with either explain my paradoxical/recent responses? if so, maybe i should redo these tests.
 
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Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Just a quick one. At about 1200mg a day, I was taking too much potassium for whatever methylation was going on. I kept pumping it in and my sleep got much worse, as well as some heart symptoms. I carefully added higher potassium foods like yogurt and squash and am currently taking no supplemental.

Also, I was pretty sensitive to magnesium, especially at night, but found that by using BodyBio drops and upping by one every few days or longer, that my sleep improved, I did feel calmer and I could tolerate higher levels at first during the day, and eventually at night. I did this over months.

Just my 2 cents.

All the best.
 

Gondwanaland

Senior Member
Messages
5,092
@Gondwanaland, i meant i was taking 3000iu vit d before this added mess.

sheesh .. sounds like depression has been lurking waiting to pounce on you and your husband. sounds rough. :hug:

my thyroid results are 2 years old. red blood cell count is from 2008! would issues with either explain my paradoxical/recent responses? if so, maybe i should redo these tests.
Those are very important results and I draw blood every 2 months to know what to do next.

The basics:
Red Blood Cell panel
White Blood Cell panel
Iron panel
Thyroid panel (including Free T4, Free T3, Reverse T3, Anti-TPO and Anti-TG antibodies)
1,25 vitamin D
25 OH vitamin D
B12
folate
homocysteine
Protein C Reactive
Erythrocyte sedimentation rate
Lipid panel

Taking thyroid hormone replacement (compounded T3 and T4) allowed me to stop taking citalopram.
5-Htp helped my husband for a few weeks, but now he needs more dopamine and vitamin D brought him out of the depression hole.

However, our integrative doctor made the mistake of prescribing us Zinc without copper, which made me severely anemic. Anemia causes brain fog, fibromyalgia, weakness, and more. And DH (yes @Kathevans it's dear husband :thumbsup:) got severe IBS-D and depression from zinc without copper. In the very 1st day I gave DH Zinc+Copper his IBS-D stopped.

It would be very helpful to know if you have anemia, because your doctor would supposedly know what to do.

My anemia was severe, but serum B12, folate, iron and ferritin were on the high end of the range, so I knew I needed copper, B6, B1, B2.

:hug:
 
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caledonia

Senior Member
hi @caledonia.

thank you for your response. sorry about the late and long response. i am not thinking clearly.

band aids sound good.

i am wary of methylation cofactors since they (magnesium, zinc) make symptoms worse that are on Fred's methyl trap list. (ie. confusion / sluggishness, some other things.) i think i have been in a mild methyl trap situation that has seriously built up over 6-8 years due to high folic acid and low b12 intake. Rich's SMP suggests a b12/folate ratio of 5:1. Fred suggests a ratio of more than 1. Ben Lynch suggests about 1.2. my ratio is about 0.2. no one on PR has improved methylation with a ratio like this. i am hopeful the cofactors will have the expected response once i reduce the folic acid so it is lower than the b12. does this make sense?

Not sure. I think there are some other things going on, which I will describe.

what other snps do you mean?

I was referring to your BHMT SNPs, which would impede the secondary (backup) methylation pathway. So if the primary pathway was methyl trapped, a way out could be to work on the secondary pathway with sunflower lecithin. Then if that was running better, you would hopefully feel better and be able to adjust the supplements for the primary pathway.

thank you for your list of supplements.
  • i am considering 5htp, but it depends on b6, which i seem short on.
  • theanine caused paresthesia, poorer sleep, lower mental clarity and increased allodynia and better stools. i think the methyl groups in theanine resulted in more folic acid being metabolised and using up b12. i don't have any better idea.
  • i might test gaba.
  • magnesium made the panic worse and increased paresthesia.
  • i am considering taurine, but vaguely recall some involvement with magnesium.
  • i take about 2g of potassium gluconate.
  • i take Now Super Omega EPA. i will look into the fish oil you mentioned.
  • i am currently wary of the methylation cycle since zinc (a catalyst for bhmt), b12 and magnesium seem to increase confusion / sluggishness. i don't know if everything else in the methylation cycle will do the same. i could test a toothpick worth of phosphatidyl choline / lecithin, i guess.

Mag makes panic worse, and you're taking 2g of potass. It's possible that you're not taking enough potass, therefore adding mag will cause potassium deficiency symptoms. (As an example, I'm taking 3780mg of potass split into 4 equal doses throughout the day.)

Note - just saw Kathevans post on too much potass causing issues. There is a sweet spot for potassium. Too much or too little can both make you feel bad.

My low potass symptoms are more like panic type symptoms - bouts of rapid pounding heartbeat, feeling anxious, could also have twitching feet at night like low mag will cause. Also ringing in the ears. Most of this seems to happen at night and it wakes you up.

My high potass symptoms - feeling kind of toxic and nauseous, metallic taste in the mouth, chest pain.

i can't think of a better approach than to get stable by reducing methylfolate production via reduced b2. however, this causes chest pain and shallow breathing.

what do you mean?

these are my detox snps: CYP1A2 164A>C +/-, CYP1B1 L432V +/+, CYP1B1 N453S +/-, CYP1B1 R48G +/-, CYP2C9*3 A1075C +/+, CYP2D6 S486T +/+, CYP2D6 100C>T +/+, CYP3A4*1B +/-, NAT2 R197Q +/-, NAT2 G286E +/-, GSTM1 Unknown due to 23andMe.

Your detox SNPs look ok - there doesn't seem to be an issue with glutathione SNPs. So then you would look at your methylation SNPs. You have an MTRR (B12 SNP) but no MTHFR. Therefore, genetically, B12 would seem to be your worst problem.

i have mercury toxicity, but am dependent on 600mg alpha lipoic acid. i tried reducing it, but energy dropped like a stone. sigh. could this cause sluggishness / confusion?

Yes - this could be the root of many (or all) of your issues.

According to Andrew Cutler, the ALA will chelate mercury, but if it's only taken like once a day, the mercury will then redistribute back into your tissues and brain, causing all kinds of problems.

The correct way to take ALA would be to take a very low dose (like 25mg or even less) every 3 hours both day and night for a couple days, then take several days off. There are several supports that need to be taken along with this to alleviate various symptoms that go along with chelating mercury.

If you stopped the ALA, there would be a redistribution of mercury for awhile, but it should eventually stop and then you should feel better. I did a trial of chelation with ALA (the wrong way) in March, and it took a good month to two months before I felt recovered from that. My symptoms were flu-like muscle and joint aches, extra fatigue and loss of energy, transient anxiety/depression, OCD death thoughts as well as brain fog. So yeah - not good.

Also, if I raise my rate of methylation above the very low amounts I'm using, I get similar flu-like muscle and joint aches and extra fatigue and loss of energy. I believe that, at least for me, methylation is causing more mercury redistribution. However, it may not be going to the brain like with the ALA, so that's a plus.

So I think the way out is to do Cutler style chelation, which I looking into doing for myself.

For you, I think the next step would be to forget everything I said about other supplements, and get off ALA to let all the redistributed mercury settle back down again. You might want to consult with the Frequent Dose Chelation Yahoo Group before proceeding. They might have some ideas on supports that would help you through the redistribution, such as DMSA. https://groups.yahoo.com/neo/groups/frequent-dose-chelation/info

In general, mercury affects methylation by affecting MTHFR and MTR/MTRR as well as CBS. So it's like having SNPs in those areas, even though genetically you may be ok. If you already have some SNPs in those three areas, it makes those areas even worse.
 

Gondwanaland

Senior Member
Messages
5,092
i just remembered other details:
- my husband's serum phosphorous was a little above range, and vit D is needed to bring it back into range due to calcium metabolism.
- you have been taking high dose ALA which chelates zinc and copper, so if you haven't been replenishing minerals this is something to look into.
- I had the same shortness of breath and dark mood when I took B2 last year and this is what prompted me to accept a prescription of citalopram. The activation of B2 involves thyroid hormones, and I think that low thyroid is what made me depressed from taking B2.

Hang in there :hug:
 
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fprefect

Ford Prefect
Messages
117
i am still low on mental clarity and can't respond properly.

on dr's advice, i am getting the hdri methylation test done. i doubt it will do anything other than confirm the existence of the methyl trap.

interestingly, Dr Tapan Audhya from hdri says antihistamines can get rid of folate in serum. i wonder if that might work as a band aid till i can chelate mercury / reduce berocca / whatever.

panic seems better and worse today. weird.

my 42nd post. somehow, i feel like i should have the answer to life, the universe and everything.


Not crying wolf! As others said,
many of us get these feelings. I gave up on methylation after several attempts - it gave me serious suicidal ideology. I was an emotional wreck and I found it really scary.

Glad to hear you are doing better today.

hi @SDSue.

thank you for your kind message. re getting emotional support, i defer to the good sense of everyone who has responded.

i am sorry you went through that misery. pre-cfs, i once had a similar experience. i can empathise to some extent.

i wonder if going super slow, like 1mcg or less at a time, might make methylation workable for you. i can understand your not wanting to go there again. it sounds like playing with fire.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
And let me just say, in defense of potassium: I no sooner increased my B-Complex by 1/2 because of some issues, than on that famous third day, I began to have potassium issues. Since it had been upsetting my stomach, I ignored it last night and today---well, let's just say, I'm playing catch up. Taking extra, drinking lots of water, eating yogurt with an orange (I'd normally try to avoid this much fructose). But here I am. Thank heavens I consulted with my husband this morning and he agreed with me that I ought to lower the B-Complex right away. Only took 1/2 today, though it's possible I should have stopped completely. (I'm not that far along in my experimentation!) Still waiting for the headache to clear... the sick potassium headache, that is, not the tight face and jaw methyl-trap headache...:lol:
 
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fprefect

Ford Prefect
Messages
117
i am still too low on clarity to respond properly.

pain and tremor from low b12 is increasing. i might have to pulse a small increase in b12 tomorrow even though it will make the panic and sluggishness/confusion and other things worse. i think that is mostly reversible, but am not sure. i can't think of anything better, at least till i figure out if antihistamines might be a workable band aid.

i haven't found any mention of antihistamine use for methyl trapping here on PR.


@fprefect,

You seem like the kind of frood who know where his towel is. Listen to these clever folks and take good care of yourself.

Like others here, I need very high Vitamin D to feel cheerful, focused and energetic. I'm on about 4,000IU and my levels are in the 80s at last check.

I take a bit of Vitamin A with that, too.

At least from my perspective - and do take it with a grain of salt - B-Vitamins seem to be what I need if I feel sorrowful for no reason. Early on in my illness, before I had the first clue what was going on, my mood was all over the place. Taking B12 fixed it like magic, as @WoolPippi describes regarding her taking Vitamin D. It is creepy-weird-fast... like flipping a switch.

This doesn't happen to me anymore because I am on a daily dose of pretty high B-Vitamins and antioxidants, which I take twice a day to ensure that levels remain consistent. If I miss a dose now, I feel less energetic, but not sorrowful.

It's not as instantaneous for me with Vitamin D, though. I have to be off for at least a week before I notice I feel less cheerful and focused.

Part of the reason acute onset was so scary for me - my emotions were all over the place. Once I applied the right supplements, I was okay, and it was all temporary - but it was so frightening while it was happening. Hang in there, okay?

-J

hi @JaimeS.

haha .. thank you. i'd like to think so, but i feel like i have been forgetting where my towel is.

i seem to need the extra vit d. not sure why i don't tolerate it though. i haven't read up on vit a. i don't supplement any, other than 1/16 of a centrum advance multivit pill. i wonder if a deficiency would explain anything.

it must have been very difficult for you dealing with acute onset, mood difficulties and not knowing what was happening. it is very good that you figured it out. i hadn't realised quite how much i depend on my usual personality in dealing with cfs until this panic started. the depression is unpleasant, but familiar. this panic requires much more effort to deal with.

i have had the same experience with b12. a sufficiently large dose lifts depression within 15 minutes or so. unfortunately, it now also causes panic, amongst other things.

it is good you have found some balance with the b vits.

i will hang in there. thank you for your support.

Ford
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
other than 1/16 of a centrum advance multivit pill.

Centrum?! Try some sawdust instead, @fprefect ! I had a colleague in nursing who informed me that those "come out exactly the way they went in" - i.e. they go totally undigested. Far from being a one-time anecdotal thing, Centrum often shows up on 'worst vitamins you can buy' lists.

Getting a better multi = high on the list. Perhaps others could recommend? I take so many tiny doses here and there that I actually have pretty much everything covered without touching a multi... however, I did find these people. Maybe someone can speak to their experience with Pure Encapsulations if they've used them before?

[Edit: if your sensitivity is to the Centrum pill, that may be due to one of the fillers or colorants they use rather than to the vitamins themselves. Though perhaps you're taking a separate B12 and we're talking apples and oranges.]

-J
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Please be careful with DMSA or DMPS. Chelation for Mercury. Everyone is so different but it totally messed me up big time. EDTA, too. You need a lot of vitamins in you to handle it.

I did tons of IV minerals to be able to handle it.

Yes, Centrum is crap. There are other better multis out there. Anything you can buy in a grocery store...stay away from.
 

Gondwanaland

Senior Member
Messages
5,092
Please be careful with DMSA or DMPS. Chelation for Mercury. Everyone is so different but it totally messed me up big time. EDTA, too. You need a lot of vitamins in you to handle it.
Agree. The person must be well in order to start chelation. Adrenals and thyroid must be 100% working, and minerals well balanced.
 

Misfit Toy

Senior Member
Messages
4,178
Location
USA
Agreed. Those meds knocked me on my a$$. DMPS caused me to go to the ER. I was so weak and sick with heart flying. Sweating....ugh. No way.
 

aturtles

Senior Member
Messages
129
Location
Seattle, WA
I would get away from folic acid. I know from personal experience that it can interfere with the methylation cycle in some disastrous ways. Within an hour of taking it, I was in a nightmare land.

I ran out of l-methyfolate, you see, and on my doctor's advice that folic acid was just as good, used it instead, and -- bam! Dark lands here I come. It was awful. Three days of hell.

That was 11 months ago. I won't touch folic acid ever again. My research and personal experience tells me that, for me at least, it's a disaster. Maybe for you, too. Consider getting off it.
 

fprefect

Ford Prefect
Messages
117
i am still not thinking clearly enough to respond properly.

it turns out histamine h2 antagonists deplete not only folate, but calcium, iron, b12, vitamin d, and zinc. an antihistamine might be like a band aid with thumbtacks embedded. perhaps 1/16 of a pill might be worthwhile to see if it depletes more folate than everything else.

I notice that a number of people are advising fprefect to take various supplements, and many of these supplements are stimulating. If fprefect is experiencing prolonged overstimulation, agitation and panic, then I wonder if it is wise to suggest/advise adding further heavy doses of stimulating supplements? Could the stimulating supplements be contributing to the prolonged panic? I might be an unusual case, but I'm sure I'm not unique, and from my own experience, small doses of b12, vit d, and folic acid all cause me uncomfortable agitation and overstimulation. I'd probably be a wreck if I took large doses of all three, simultaneously. I'm not sure if it's a good idea to assume that our own positive experiences with supplements will automatically be experienced by someone else who may have different biological needs.
@Bob,

thank you for counselling caution. in my situation, the panic seems related to reducing berocca and not replacing b6 adequately. when i replaced some of the b6, the panic decreased within 20 mins. however, i can't add more b6 without added pain from low b12 and added tremor in my limbs. currently, the choice seems to be between letting combined subacute degeneration develop faster or deal with the panic. it would be worse if i didn't have the choice. :)

We have a special section for emotional support also. This section is, for the sake of privacy, only visible to those who have more than 100 posts, and you are not quite there yet, but I wanted to let you know about it. It is also in a Members Only section which means it is not indexed by search engines.

In this thread you are also discussing emotions as related to nutrient levels, which is fine too.

I am so glad that you are continuing to dialogue with other members when you have the energy.
@Sushi,

thank you for the info. that is good to know. :)

@fprefect

What a awful experience. This person sounds very unprofessional. You might not have the energy right now, but it sounds like he/she needs to be reported. Maybe your sister could help?

If the therapist feels it's not a right fit, he/she needs to refer you to someone else and not be so dismissive.

Don't give up on the therapy. It sometimes takes several therapist before finding the right match.

I had a similar experience and I eventually found someone who has really helped.

I am so sorry you have gone through this. It's especially hard dealing with something like this when not feeling the best. There is absolutely no excuse for being treated like this!

Barb
@barbc56

thank you for your support and advice. i was a bit less accepting of my therapist's behaviour after i saw your message. i agree his behaviour that day was unprofessional. i am not keen on reporting him as he has helped quite a lot at times over 9 years.

despite this miscommunication, he is still more effective than other therapists i have seen. i am less impressed with him now though. if therapy with him is no longer effective enough, i will find someone else.

one good thing is that after this experience, i am more aware of how the panic has been straining my relationships. i try not to let it in the way.

Uhm... yes :D you read very precisely.
I'll edit it.

I take 4000 iu per day. One pill of 75 mcg in the morning and 25 or 15 mcg at 14 o'clock.

Btw, I take mB12 and methylfolate maybe once a fortnight, in a very low dose. It stimulates very much and takes 3 days to get calm again. At a very low dose, maybe 200 mcg.
Once the reaction lessens I'll increase the frequency. Maybe next year. I'm in for the long game.
@WoolPippi,

thanks. i think. :p

3 days sounds rough. your patience sounds like a good idea. i want to do the same thing, on the same timescale if necessary, but with much lower doses.

@fprefect I find magnesium very calming. I started it after I felt a bit agitated after starting methylation treatment. I take 125mg twice a day. Others on PR take much higher doses and also use it in footbaths.

Hoping for better days for you.

Sending you love and encouragement.

Best wishes, Andy.
hi @AndyPandy.

thank you for your kind message.

adding magnesium currently increases panic and other symptoms. reducing magnesium causes a splitting headache, but i think it improves mental clarity, oddly. i currently take somewhere between 600mg and 1000mg. i am glad it works for you.

Ford