Why are B12 supplements making my symptoms so much worse?

[sofa]

I apologize up front for being the bearer of bummer news, but it's not as bad as it could be. It just might take longer than you, or any other rational human, would expect.

Early on, I gradually developed bad reactions to almost everything from supps and herbs to basic foods. Pretty much anything I put in my mouth and/or body, and they were things that I'd taken without issue for practically my whole life.

And I think one of the first things that I realized I was suddenly sensitive to was B-comp ..... I say "I think" because so much went wrong so fast, including memory and cognition, that it's hard to remember the exact sequence.

The short version is that it took several years before I could tolerate any of it again, but I was reactive to soooooo much more than just the B-12 that I dont think you'll be facing the same thing. I also didnt have access yet to Phoenix Rising, I didnt even know it existed, so I had no helpful input about what was happening to me or how to deal with it.

You might be facing more than a couple of days or a couple of weeks, but I can almost certainly promise you that it wont be measured in years. Keep reading these threads, re-read some of what was posted here by @Judee , @Pyrrhus , @helen1 , @perchance dreamer, and the links to info that @caledonia posted for you, because it's really solid, good information and might turn the tide for you.

Most of all, don't give in to panic, don't beat yourself up over this, and don't give up !!! A surprizingly large number of members here have faced the same thing with B-12, and B vitamins in general, and we all survived. Some of us did better than just survivie it.

Soooooo ..... onward and upward !!!!

What is the reason that I am so sensitive? Could it be covid or the withdrawal from the antidepressant?

Have never reacted to anything before.

The B12 seems to be making me restless, making me way more anhedonic and making my cognition worse. I did not know it could make cognition worse.

But this will let up and I will get back to my old baseline?

Do you know what would be the best way to treat my B12 deficiency? If all B12 are methyl donors, how do you do it?

 

[sofa]

Can B12 make you feel really restless too, like ADHD almost?

I am really restless. It is not just my body, but my mind is also restless.

I have to constantly get up and walk to relieve some of the restlessness, but it does not go away. I also feel restless in my head, and I cant focus or concentrate on anything. I can just forget reading or watching TV. This makes me really sad and frustrated because I have never had this issue before with being so restless and unfocused.

This just came on a few days ago.
Can it improve? I need to be able to focus for university.
Is it normal for such symptoms to just suddenly show up after quitting the B12, or is it the deficiency itself?

 

[YippeeKi YOW !!]

Can B12 make you feel really restless too, like ADHD almost?

Yes. It can make you incredibly twitchy and restless ....

Can it improve?

Absolutely. But if you're asking if it can improe overnight, probably not without some effort on your part ....

Is it normal for such symptoms to just suddenly show up after quitting the B12, or is it the deficiency itself?

It's hardly unknown for weird reactions to appear almost overnight, especially with ME. Whether it's the deficiency itself (I assume you mean a B-12 deficiency) or the B-12 or the form of B-12 that you took that's creating your side effects is hard to say.

Read @Pyrrhus, @Judee, @caledonia , and @JES 's posts on page one. A lot of issues are addressed there, and I dont know if you saw them or not ... you might find some genuine help and direction ....

As I said in my post to you (also on Pg 1), I went thru violently unpleasant reactions to almost everything, and as well as I remember, the reaction to B-vits, including B-12, was among the first, if not the first, to present.

Just know that this isn't a permanent alteration, and you're not cursed for life, tho I know how easy it is to fall into that kind of fear reaction .....

 

[caledonia]

Yes, B12 and some of the other B vitamins can make you feel overly revved up/anxious.

If what you've inadvertently done is crank up methylation, you can get relief within a few minutes with the correct supplement(s).

If you're having something more like a chemical sensitivity reaction, there is one thing that could help right away.

The solutions for these should work quickly, and shouldn't hurt you if those aren't what's going on.

If those solutions don't help, consider that there is also a discontinuation syndrome that can happen if you've been on SSRI type antidepressants. It can happen while starting, stopping, or changing doses. If you've been on the med for a long time, it may not kick in until up to 6 months after you discontinue. It can cause akathisa which is super extreme. There is help for this, but it takes awhile.

I've had all three situations happen to me. The antidepressant situation is by far the worst. If that is your situation, you should consult with a mental health professional who's good with managing medications and who's used to working with sensitive people.

The thing where you mention you have to pace around makes me think it might be your antidepressant. And the B12 might be a red herring. If you discontinued the med without tapering off very gradually that is another clue.

Even if it turns out to be that, you can still get better, but it might take more like several months to get stable again.

 

[Eastman]

@sofa

Your symptoms appear to be neurological in nature. Such symptoms can sometimes be the result of a thiamine/vitamin B1 deficiency. See here for more info.

If you look around the forum, you would be able to find reports from several members who found that supplementing with thiamine helped with problems that arose after B12 supplementation/methylation treatment. See, for examples, here and here.

 

[sofa]

Yes, B12 and some of the other B vitamins can make you feel overly revved up/anxious.

If what you've inadvertently done is crank up methylation, you can get relief within a few minutes with the correct supplement(s).

If you're having something more like a chemical sensitivity reaction, there is one thing that could help right away.

The solutions for these should work quickly, and shouldn't hurt you if those aren't what's going on.

If those solutions don't help, consider that there is also a discontinuation syndrome that can happen if you've been on SSRI type antidepressants. It can happen while starting, stopping, or changing doses. If you've been on the med for a long time, it may not kick in until up to 6 months after you discontinue. It can cause akathisa which is super extreme. There is help for this, but it takes awhile.

I've had all three situations happen to me. The antidepressant situation is by far the worst. If that is your situation, you should consult with a mental health professional who's good with managing medications and who's used to working with sensitive people.

The thing where you mention you have to pace around makes me think it might be your antidepressant. And the B12 might be a red herring. If you discontinued the med without tapering off very gradually that is another clue.

Even if it turns out to be that, you can still get better, but it might take more like several months to get stable again.

I did quit an antidepressant, I do have so many weird symptoms that constantly change all the time. I dont feel like myself at all and I have no control over what is happening. It is really scary.

Could the B12 that I took have interfered with the withdrawal, and that made my anhedonia, apathy and cognition worse? As well as the restlessness?

What should I do of the B12 is worsening my withdrawal-symptoms? Is it something to do with methylation or dopamine?

I dont want to get permanent damage by the B12 deficiency either, so I don know what to do. I dont want to risk my cognition and apathy/anhedonia to get even worse. My brain and body feels fried.

What would be the correct supplements if my problem is overmethylation? What can I do if the problem is chemical sensitivity?

 

[CSMLSM]

Do you know why the symptoms can last for up to eight weeks? Do you know the mechanism?
Does B12 affect dopamine or serotonin? Since it drastically worsened my anhedonia?

The anhedonia has been getting progressively worse since I took cyanocobalamin two weeks ago.

Hi, first I would like to say you have already been given some truly great advice by other members and it pleases me greatly that others are aware and sharing.
I would like to add from my own experience and research with extreme B12 deficiency-

CyanoB12 as mentioned inhibits the binding of the B12 that can be taken up and prevents utilisation of the B12 you are desperately deficient in, slowing recovery.
B12 is needed for DNA and RNA processes as well as neurotransmitter production. The way you feel is because your body is unable to make brain products it needs and your immune system will likely kick in because it will have been surpressed by the deficient B12. This means your emotions, senses and immune function could be engage more and unbalanced to begin with but will improve. Main thing is to not think of the process as bad but neccesary and just try to ride it out knowing everything thing will balance out soon.
Basically you gotta reboot and its going to be a little unstable for a while, please try to be relaxed as this is happening.
Omega 3 will help with mood as it is needed for certain receptors for feel good products your brain uses to make you feel normal.
As suggested take Folate(B9) and B6 in higher amounts while taking the loading dose course of B12 and a broad spectrum B vitamin supplement.
The bad reaction to the antidepressant is likely because you are B12 deficient depressed and not actually depressed ect for a reason. It is trying to work on a system completely out of balance or non functioning.

Liver is a good natural high dose source.

Here is an excellent video on the subject of misdiagnosed and incorrectly treated B12 deficiency.
Diagnosing and Treating Vitamin B12 Deficiency - YouTube


Hope thats helpful

 

[sofa]

Hi, first I would like to say you have already been given some truly great advice by other members and it pleases me greatly that others are aware and sharing.
I would like to add from my own experience and research with extreme B12 deficiency-

CyanoB12 as mentioned inhibits the binding of the B12 that can be taken up and prevents utilisation of the B12 you are desperately deficient in, slowing recovery.
B12 is needed for DNA and RNA processes as well as neurotransmitter production. The way you feel is because your body is unable to make brain products it needs and your immune system will likely kick in because it will have been surpressed by the deficient B12. This means your emotions, senses and immune function could be engage more and unbalanced to begin with but will improve. Main thing is to not think of the process as bad but neccesary and just try to ride it out knowing everything thing will balance out soon.
Basically you gotta reboot and its going to be a little unstable for a while, please try to be relaxed as this is happening.
Omega 3 will help with mood as it is needed for certain receptors for feel good products your brain uses to make you feel normal.
As suggested take Folate(B9) and B6 in higher amounts while taking the loading dose course of B12 and a broad spectrum B vitamin supplement.
The bad reaction to the antidepressant is likely because you are B12 deficient depressed and not actually depressed ect for a reason. It is trying to work on a system completely out of balance or non functioning.

Liver is a good natural high dose source.

Here is an excellent video on the subject of misdiagnosed and incorrectly treated B12 deficiency.
Diagnosing and Treating Vitamin B12 Deficiency - YouTube


Hope thats helpful

I feet like I have developed som weird dementia after I took the B12. I googled pseudo dementia, and I have all the symptoms. My brain is not working and I dont have any emotions at all.

I just dont understand how B12 could cause more cognitive dysfunction, anhedonia, apathy and personality changes.

I dont recognize myself at all.

Methyl B12 made no difference.

Can B12 lead to overmethylation, which could be causing my problems?
Can the B12 I took cause permanent alterations in the brain?

Afraid that this cognitive impairment is forever and that my personality and emotions never will come back. It is such a scary thought.

I lot of my symptoms before was brought on by a bad reaction to an antidepressant and covid. I dont know if that affected my brain in any way that made me sensitive to B12. I read one should avoid B12 in withdrawal, and that methyl donors is a no no. But I dont understand why.

 

[JES]

I don't think @sofa 's problems are due to B12 deficiency. As mentioned in this thread, lots of people with ME/CFS react badly to all kinds of B12 supplements, whether cyano or methylcobalamin. To view this simply as B12 deficiency is a mistake in my view. My B12 levels are quite a bit lower than 10 years ago, probably due to diet or absorption issues. Yet, even 10 years ago when I had very much in the middle B12 levels, I still reacted negatively to any kind of B12.

I also react negatively to several other B-vitamins, so I don't think thiamine supplementation will necessarily solve anything. The restlessness/agitation I got from B12 incidentally got better with niacinamide (B3). This is the only B-vitamin that doesn't cause side effects for me and actually has the opposite, calming effect. Might have something to do with the over/undermethylation hypothesis, as B3 is supposedly promoting undermethylation, but in reality things are probably a lot more complex. Just make sure you get the niacinamide form and not plain niacin if you trial this, as the latter one didn't work quite the same for me.

 

[CSMLSM]

I don't think @sofa 's problems are due to B12 deficiency. As mentioned in this thread, lots of people with ME/CFS react badly to all kinds of B12 supplements, whether cyano or methylcobalamin. To view this simply as B12 deficiency is a mistake in my view. My B12 levels are quite a bit lower than 10 years ago, probably due to diet or absorption issues. Yet, even 10 years ago when I had very much in the middle B12 levels, I still reacted negatively to any kind of B12.

I also react negatively to several other B-vitamins, so I don't think thiamine supplementation will necessarily solve anything. The restlessness/agitation I got from B12 incidentally got better with niacinamide (B3). This is the only B-vitamin that doesn't cause side effects for me and actually has the opposite, calming effect. Might have something to do with the over/undermethylation hypothesis, as B3 is supposedly promoting undermethylation, but in reality things are probably a lot more complex. Just make sure you get the niacinamide form and not plain niacin if you trial this, as the latter one didn't work quite the same for me.

The original question asked about B12 and how it can affect you. The doctor was also mentioned as prescribing B12.

 

[JES]

The original question asked about B12 and how it can affect you. The doctor was also mentioned as prescribing B12.

Yes, and my experience is B12 has not provided particularly useful to ME/CFS patients. We have this whole section on this forum dedicated to methylation treatments and over the years very few persons I am aware of recovered this route. I spent several months wasting my time on this treatment approach, which in my view has been given an over-hyped "cure all" status.

B12, obviously, is useful and necessary to supplement if you truly are deficient, which is mainly the case if you have pernicious anemia or have absorption issues, which is more likely with old age. I have vitamin B12 levels in low 200's these days, but supplementation always made my ME/CFS worse. It did not get better with time either. That echoes the original poster's experience of worsening mood and neuropathic pain when taking B12.

Based on my experience with experimenting with supplements, my view is that it's not worth putting a lot of effort hoping that a treatment for ME/CFS will magically start working weeks or months later if it produces zero or negative side effects at the beginning.

 

[caledonia]

I did quit an antidepressant, I do have so many weird symptoms that constantly change all the time. I dont feel like myself at all and I have no control over what is happening. It is really scary.

Could the B12 that I took have interfered with the withdrawal, and that made my anhedonia, apathy and cognition worse? As well as the restlessness?

What should I do of the B12 is worsening my withdrawal-symptoms? Is it something to do with methylation or dopamine?

I dont want to get permanent damage by the B12 deficiency either, so I don know what to do. I dont want to risk my cognition and apathy/anhedonia to get even worse. My brain and body feels fried.

What would be the correct supplements if my problem is overmethylation? What can I do if the problem is chemical sensitivity?

I've already posted links to my methylation documents twice. Please read them.

I'm not sure if I have the chemical sensitivity info in there or not. The thing to try for that is a baking soda solution. Follow the antacid recipe on the box. It's something like 1/2 tsp in 4oz of water.

 

[YippeeKi YOW !!]

I lot of my symptoms before was brought on by a bad reaction to an antidepressant

Anti-d's play merry hell with your CNS, brain, and neuro-transmitters. Coming off them adds a whole new layer of Hades. And the only cure is time and VERY CAREFUL trialing of vits and supps.

I'd also recommend that you READ CALEDONIA'S LINKS AND INFO.

You might also want to add magnesium glycinate, which will help with the rebalancing of your neuro-transmitters, and is generally beneficial to a lot of issues and systems. Most people, especially those who've been on meds and psych meds particularly, are deeply deficient in magnesium, which is utilized by almost every system in your body and is involved in over 600 different enzyme actions and conversions. It should calm many of your reactions, but it won't work over night. You should, however, sense an improvement fairly quickly, within the first week or two.

 

[CSMLSM]

Yes, and my experience is B12 has not provided particularly useful to ME/CFS patients. We have this whole section on this forum dedicated to methylation treatments and over the years very few persons I am aware of recovered this route. I spent several months wasting my time on this treatment approach, which in my view has been given an over-hyped "cure all" status.

B12, obviously, is useful and necessary to supplement if you truly are deficient, which is mainly the case if you have pernicious anemia or have absorption issues, which is more likely with old age. I have vitamin B12 levels in low 200's these days, but supplementation always made my ME/CFS worse. It did not get better with time either. That echoes the original poster's experience of worsening mood and neuropathic pain when taking B12.

Based on my experience with experimenting with supplements, my view is that it's not worth putting a lot of effort hoping that a treatment for ME/CFS will magically start working weeks or months later if it produces zero or negative side effects at the beginning.

OK your experience but maybe not this person and a DOCTOR prescribed it and we were asked about B12.
Just because someone thinks they are B12 deficient and needs B12 does not mean they think it cures everything. Me having actually had severe B12 deficiency that caused all the major symptoms and I had lost feeling in body parts among other really bad stuff I know all about B12 recovery and what is needed to reverse nerve impairment along with all the struggles that go with it and just how very long it takes and the effort and struggle against the real lack of doctors that treat it properly (may have changed by now).

 

[JES]

OK your experience but maybe not this person and a DOCTOR prescribed it and we were asked about B12.
Just because someone thinks they are B12 deficient and needs B12 does not mean they think it cures everything what are you talking about I am confused. Me having actually had severe B12 deficiency that caused all the major symptoms and I had lost feeling in body parts among other really bad stuff I know all about B12 recovery and what is needed to reverse nerve impairment along with all the struggles that go with it and just how very long it takes and the effort and struggle against the real lack of doctors that treat it properly (may have changed by now).
I do not understand why this was posted.

OP has stated B12 made them much worse. Therefore, the sensible course of action is to avoid B12 or at least lower the dosage. With ME/CFS, I found it very risky to continue taking drugs or supplements that made me worse, so cautioning against it makes perfect sense.

ME/CFS is also not B12 deficiency and B12 deficiency is not ME/CFS, was my other point, even though they share certain symptoms like fatigue. Most people on this forum are not fatigued due to B12 deficiency though, but due to ME/CFS, which goes much deeper.

 

[CSMLSM]

Doctor prescribed B12 and doctors can only prescribe something that is appropriate (a test maybe) and B12 can make you feel worse at first or after an initial feeling better and can be all over the place for a while depending how bad it is as ligands and receptors find homeostasis among the multitude of biological processes that WILL nave been affected and sent out of balance (homeostasis).

My opinion will not change

 

[Zahr82]

Guys. I think I've just got the same thing. I started a load of supplements today, including a b12 patch. O feel over stimulated , and generally terrible

 

[JohnMichels086]

Guys. I think I've just got the same thing. I started a load of supplements today, including a b12 patch. O feel over stimulated , and generally terrible

You are not alone. I took 4 capsules of b12 complex and Im 3 months now overstimulate. I cant nap during the day, very strange feeling. My libido and sexual feeling increased to premature ejaculation. My sleep during night is not refreshing... Because my sleep is not deep, Im not feeling generaly okay... I sleep 6 hours a night but the deep of sleep is poor. I wake up tired. CNS is overstimulated and who knows what that is... After 3 monthes i feel better but I think I need 3 more, or 6 more to completlly heal, and never touck that b12 ever again !

 

[Zahr82]

You are not alone. I took 4 capsules of b12 complex and Im 3 months now overstimulate. I cant nap during the day, very strange feeling. My libido and sexual feeling increased to premature ejaculation. My sleep during night is not refreshing... Because my sleep is not deep, Im not feeling generaly okay... I sleep 6 hours a night but the deep of sleep is poor. I wake up tired. CNS is overstimulated and who knows what that is... After 3 monthes i feel better but I think I need 3 more, or 6 more to completlly heal, and never touck that b12 ever again !

Damn, it hit you hard. Yeah thats really strange how it can effect us like it does. I thought it was just a supplement

 

[JohnMichels086]

Yes it is.
I need time to recover now. Its already been 2 months and 22 days.
I will recover overtime. As soon as my sleep get better, I will recover.
Now I sleep 6 hours but waking up tired.
So need my sleep to recover and be my old self.
I will make it.