Horrible reaction to b12 cyanocobalamin

[pinkpapaya]

Hello!

I posted an introduction here a week ago about my reaction to b12. Unfortunately, my symptoms have remained the same. I had to fly back home from grad school, which I'm really self-concious about, but I need to be home. I'd like some advice on things I can do. Here is an overview:

-I am female and 24 years old, 98 pounds.

-On January 18th I took 1000 mcg of b12 to help with energy. The container said it's recommended to take 1 daily, so that's what I did. That night was the first night I had ever insomnia and a panic attack.

-It was Walgreens brand, and contains: dicalcium phosphate hydroxypropyl methylcellulose, microcrystalline cellulose, contains 2% or less of cyanocobalamin, magnesium stearate, silicon dioxide, starch

-I took the b12 for 10 days over the course of 2 weeks.

-Throughout that time, I had brain fog, disassociation, anxiety, depression, and worst of all, insomnia. Everytime I was about to sleep, adrenaline flooded me and I was forced back awake. I figured it was just the stress of grad school.

-When I figured out it was the b12, on Feb 1 I stopped and I was able to sleep for 2 nights. But it was only those two nights.

It's been 21 days since I stopped taking the b12, and I am sitting here with extreme derealization, head pressure, brain fog, panic attacks vision sensitivity, random lip and eye twitching, increased tinnitus, and sometimes random burning sensations. I am still having trouble sleeping and have to take Ativan I got from the ER to help. But I still don't feel like I'm getting good sleep. I don't know if the brain fog is from the b12, lack of quality sleep, the Ativan, or what.

I don't know if I'm undermethylated, overmethylated, or what. All I know is that taking 10 doses of 1000mcg b12 changed me. I literally feel like I've been poisoned.

I am seeing a doctor tomorrow. I really hope they can help, but I haven't had much luck with the doctors back at school so I'm a little nervous.

Has anyone else experienced this? Is 21 days too early to be expecting to feel better? Is there anything I can do to help? I've bene upping my electrolytes but I don't feel like that's helping.

 

[Mary]

@pinkpapaya - you may be overmethylated - your symptoms certainly sound like it. Niacin can slow down or stop methylation.

See: https://mthfrsupport.com.au/2020/07/neutralising-a-methyl-reaction-niacin-antidote-instructions/

You can see the list of symptoms linked with overmethylation, including insomnia. They recommend taking 50 mg. of niacin every hour or 2 until symptoms subside. Niacin can cause a flush which is considered to be harmless. I take niacin at night before bed, it causes a flush (which is temporary) but it helps me sleep.

Since you're so sensitive to B12, I would go slowly and carefully with any supplements you introduce until you know how you react.

I wouldn't expect help from your doctor unless they are exceptional. Methylation is complicated and there are members here who are fairly knowledgeable. Hopefully the niacin will help you calm down and once that happens, you can get more info about methylating and how to go about it.

 

[pinkpapaya]

@pinkpapaya - you may be overmethylated - your symptoms certainly sound like it. Niacin can slow down or stop methylation.

See: https://mthfrsupport.com.au/2020/07/neutralising-a-methyl-reaction-niacin-antidote-instructions/

You can see the list of symptoms linked with overmethylation, including insomnia. They recommend taking 50 mg. of niacin every hour or 2 until symptoms subside. Niacin can cause a flush which is considered to be harmless. I take niacin at night before bed, it causes a flush (which is temporary) but it helps me sleep.

Since you're so sensitive to B12, I would go slowly and carefully with any supplements you introduce until you know how you react.

I wouldn't expect help from your doctor unless they are exceptional. Methylation is complicated and there are members here who are fairly knowledgeable. Hopefully the niacin will help you calm down and once that happens, you can get more info about methylating and how to go about it.

I didn't know you could get overmethylated with cobalamin b12.

Now I'm worried that I should've taken Niacin immediately when I stopped taking b12. Will niacin still work even though it's been 3 weeks since I've taken b12?

 

[pinkpapaya]

Another question: my b12 levels were never tested before I took the supplements. Could my reaction mean I was deficient?

 

[Mary]

niaI didn't know you could get overmethylated with cobalamin b12.

Cyanocobalamin is a synthetic form of B12 which the body converts into methylcobalamin or adenosylcobalamin. So it should be able to cause overmethylation.

Will niacin still work even though it's been 3 weeks since I've taken b12?

I think it should. Niacin helps slow down or stop methylation and if overmethylating is your problem, I don't see why it wouldn't help now.

Another question: my b12 levels were never tested before I took the supplements. Could my reaction mean I was deficient?

I don't know.

Methylation is complicated and I've read one should take folate along with B12 but I can't advise you on this. I think it's something you should research and ask about here before trying B12 again.

 

[Bluebluesky]

Another question: my b12 levels were never tested before I took the supplements. Could my reaction mean I was deficient?

I'd say that is very like that you were deficient. I have a long history with b12 deficience and I've read along in a b12 deficiency forums for several years. Your reaction is quite extreme, but not unheard of. And such a reaction from someone who wasn't dficient is pretty much unheard of. B12 is water soluble. It should be perfectly safe, it should just be washed out.

And the bad news is that the proof that you were deficient will now be likely to be gone since the b12 level in the blood will rise as soon as you supplement with b12 and it may stay high for years even if you're still deficient.

And another bad news is that a lot of doctors know very little about b12 deficiency and even less about methylation. They might tell you that you can't be deficient in b12 if you don't have anemia. They might even try to tell you that it wasn't b12 that caused your reaction.

Beside b12 and folate you should ask to have blood tests for iron and ferritin and potassium and vitamin d at least. Maybe others have more suggestions. Iron and vitamin d is almost always low or border-low if you have b12 deficiency, so that might be a sign.

 

[Seadragon]

Hello!

I posted an introduction here a week ago about my reaction to b12. Unfortunately, my symptoms have remained the same. I had to fly back home from grad school, which I'm really self-concious about, but I need to be home. I'd like some advice on things I can do. Here is an overview:

-I am female and 24 years old, 98 pounds.

-On January 18th I took 1000 mcg of b12 to help with energy. The container said it's recommended to take 1 daily, so that's what I did. That night was the first night I had ever insomnia and a panic attack.

-It was Walgreens brand, and contains: dicalcium phosphate hydroxypropyl methylcellulose, microcrystalline cellulose, contains 2% or less of cyanocobalamin, magnesium stearate, silicon dioxide, starch

-I took the b12 for 10 days over the course of 2 weeks.

-Throughout that time, I had brain fog, disassociation, anxiety, depression, and worst of all, insomnia. Everytime I was about to sleep, adrenaline flooded me and I was forced back awake. I figured it was just the stress of grad school.

-When I figured out it was the b12, on Feb 1 I stopped and I was able to sleep for 2 nights. But it was only those two nights.

It's been 21 days since I stopped taking the b12, and I am sitting here with extreme derealization, head pressure, brain fog, panic attacks vision sensitivity, random lip and eye twitching, increased tinnitus, and sometimes random burning sensations. I am still having trouble sleeping and have to take Ativan I got from the ER to help. But I still don't feel like I'm getting good sleep. I don't know if the brain fog is from the b12, lack of quality sleep, the Ativan, or what.

I don't know if I'm undermethylated, overmethylated, or what. All I know is that taking 10 doses of 1000mcg b12 changed me. I literally feel like I've been poisoned.

I am seeing a doctor tomorrow. I really hope they can help, but I haven't had much luck with the doctors back at school so I'm a little nervous.

Has anyone else experienced this? Is 21 days too early to be expecting to feel better? Is there anything I can do to help? I've bene upping my electrolytes but I don't feel like that's helping.

You mention Ativan - did you change your dose or stop taking it? This sounds a bit like benzodiazepine withdrawal symptoms.

Hope you feel better soon - it might be wise to avoid B12 if your reaction was so severe.

 

[Tammy]

Should you ever decide to try B12 again, I would purchase methylcobalamin with adonsylcobalamin and preferably a liquid. That way you can carefully adjust the dosage.

 

[pinkpapaya]

You mention Ativan - did you change your dose or stop taking it? This sounds a bit like benzodiazepine withdrawal symptoms.

Hope you feel better soon - it might be wise to avoid B12 if your reaction was so severe.

I did stop taking it. It was .5 mg and I've probably only taken like 10 of them...but I know you can get withdrawl from a small timeframe/dosage.

I hope I feel better soon, too. I was completely normal before this