Methylcobalamin and Headaches - Pernicious Anaemi...

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Methylcobalamin and Headaches

Booksellercate profile image
21 Replies

I was wondering if anybody had any specific advice, information or reassurances regarding getting headaches whilst on Methylcobalamin.

I'm on 2 x 5000mcg/day (15 days so far) and suffering monster headaches.

I've ordered some potassium supplements and dried apricots as some have suggested potassium deficiency might be causing the headaches.

I don't know if I should change the dose, or even the form of B12 I'm taking.

Some have suggested they might be 'transient/start up symptoms' - has anybody any stories on how long these are likely to last?

Thank you!

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Booksellercate profile image
Booksellercate
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21 Replies
Jose651 profile image
Jose651

Hi Booksellercate,

I have read your previous post and would suggest that you go to MTHFR Support.

And;

Gene Mutations that need to be addressed before starting with MTHFR 

I got a test that showed up  MTHFR Mutation. Some people aren't suited to MCobalamin or Methylfolate . 

There are 2 genes that can have a heavy impact on your health that need to be looked at before an MTHFR protocol is started . CBS and SUOX.

Read and learn all you can. It is complicated. A lot of people do just find on Hydroxocobalamin in any form. 

Maybe it would suit you better.

J

Booksellercate profile image
Booksellercate in reply toJose651

I've managed to find some hydroxocobalamin sublinguals as well as injections. I think I'm going to try a switch-if the headaches continue then I'll have to accept that it's my body repairing itself. The level of pain is so severe though (I've just got up after being unable to move for 5 hours) that instinct tells me nothing good is coming of this. I can tolerate a mild headache but to be incapacitated? That's something else.

I know that methylcobalamin is the active, therefore most efficient form (especially for treating neurological symptoms) but I have to also respect my pain threshold!

Allyson1 profile image
Allyson1 in reply toBooksellercate

You don't have to push yourself to think that every bad side effect is a sign of healing. Sometimes it might not be. If your instinct makes you uneasy...

I had horrendous headaches on methylcobalamin, and psych changes too. And cystic acne after a couple of months. It was too destablilizing, I never found a way to tolerate it. Iwish I had just had loading doses of hydroxocobalamin from the start.

I'm not really sure about addressing other polymorphisms. I don't know of any solid evidence and there is a lot of conflicting info. You may not be getting enough adenosylcobalamin.

It is a good idea to try the potassium.

pugdogs10 profile image
pugdogs10

Hi... it really is quite early days to change anything. I would persevere a bit longer. It is easy to get confused if you swap and change too often.

Have you had headaches before you started supplementing? Dr Joseph Chandy says on his website b12.org that symptoms kind of reverse out in the order you experienced them in the first place. I had an increase in my numbness, tingling and oral symptoms when I first started on Jarows 500mcg . But these disappeared in a few weeks. Have a look at the website the info is in the FAQ s. Food for thought!!!!

Good luck.

Booksellercate profile image
Booksellercate in reply topugdogs10

I know headaches are quite common. I was slightly alarmed and confused after reading about methylation.

I didn't have headaches before-just faintness/dizziness. The headaches came on about a week after I started to take methylcobalamin. I don't know how long to wait for them to recede if it's a 'start up'/transient symptom. 

pugdogs10 profile image
pugdogs10 in reply toBooksellercate

Megan is right about trial and error. B12 is the most complex vitamin and the whole business is very confusing....maybe see what happens in a week and then try hydroxocobalamin. Do hope your headaches get better soon. Best wishes.

Booksellercate profile image
Booksellercate in reply topugdogs10

I've just been incapacitated for 5 hours with head pain-instinct tells me that any good being done in my body would not cause this level of pain :( there's 'good pain' and 'bad pain' I think and this definitely doesn't feel right to me. 

I have hydroxocobalamin injections and sublinguals on their way so I might have to switch- if the headaches continue I guess I'll have to accept (somehow!) that my body is just repairing itself. 

I don't know if I can use a combination of these two B12 forms - perhaps reintroduce MC later in a smaller dose...

megan17 profile image
megan17

I have tried methyl  as sublingual tablets, patches and sprays and all have given me a headache so bad I give up after a couple of days. I now self inject hydroxo weekly and have no side effects from this and feel much better for it. We are all different it seems and different forms of B12 work better for some than others. Should also mention I tried adenosylcobalamin lozenges and had no side effects with these ...........but then no positive effects either!

I hope you find a supplement / regime that suits you. It seems to me that it's trial and error before you find the right one.

Booksellercate profile image
Booksellercate in reply tomegan17

Thank you-I'm waiting for a supply of hydroxycobalamin ampoules so I can inject. I'm not sure I can tolerate these headaches for much longer-I've never known anything like them!

Jose651 profile image
Jose651 in reply toBooksellercate

I do think that is a wise decision B. If I were you, I would not take MCobalamin at present. 

Look up (when you have the energy) sites re methylation that have been suggested on your previous post as well and you will come across Methylation side effects. Dr Ben Lynch recommends NIACIN for Over methylation which could be what you are experiencing at the moment. 

Hope you are feeling a bit better soon

I am not a Doctor, just someone who had to learn for my own wellbeing.

J

Booksellercate profile image
Booksellercate in reply toJose651

Thank you-I'll look into niacin-desperate to get rid of these headaches now. 

Some have suggested that the headaches are the result of my body repairing itself-but these headaches do not feel good in any way!

I don't know if there's any way of combating a potential methylation problem eg through dose or pairing with something else-or if it's just to be avoided altogether..

Booksellercate profile image
Booksellercate in reply tomegan17

I'm glad (in the nicest possible way!) I have a fellow headache sufferer!

Did you have neurological symptoms as well? I've heard that hydroxocobalamin isn't quite is effective or quick in treating them as methylcobalamin..which is why I initially opted for MC. Do you know if there are any supplements to take which might help your body out in converting the hydroxocobalamin?

Booksellercate profile image
Booksellercate

Hey,

I'm new to methylation..and not really in the right state for computer screens and reading (the head).

Are you suggesting that I could try taking methylfolate and this is one way to fix a possible methylating problem (which might be causing headaches)?

fbirder profile image
fbirder in reply toBooksellercate

Yup. I didn't like methylcobalamin the one time I tried injecting it. But I've felt a lot better soon nice I started taking methylfolate and injecting hydroxocobalamin.

ndodge profile image
ndodge

I agree with you, booksellercate and Jose 651, that perhaps another form of B12 is the better way to go. Headaches that bad don't sound healing! You just have to listen to your body and to your instincts. Everyone is so different. I tried Cyanocobalamin for a year and it did nothing for my neuro and other symptoms. That's before I discovered this wonderful & amazing site and learned so much from the kind and knowledgeable folks that post here. Or I wouldn't have stayed on it for so long! I switched to methyl which works great for me; no side effects and relief from my B12d symptoms. I recently tried sublingual adeno which made me feel tired and one of my neuro symptoms came back and I only used it for 2 days! So, it's trial and error to find the right form for you! Best wishes for a successful outcome.:-)

megan17 profile image
megan17

In answer to your question, I had a lot of neuro symptoms around the time of diagnosis nearly three years ago. All have disappeared except some remaining fatigue. Some mild tingling and muscle weakness does return sometimes before my next injection is due but on the whole I'm tons better! Hope it's not too long before you say the same!

Megan

Lily73 profile image
Lily73

I get headaches when I take methylcobalamin sublinguals but not when I take hydroxocobalamin.  Headaches were what caused me to switch types.

(Methylfolate makes me feel unwell too - nausea and diarrhoea.)

Clarealbinson profile image
Clarealbinson

Dear Booksellercate,

I've had those awful headaches - the ones that nothing seems to clear. I've tried Niacin too and it makes no difference.  I cut my dose down to 5000 and upped the potassium. I would have a banana and 600mg in the am and another 400 in the evening and the headaches stopped.  Strangely, potassium didn't help the headaches go, just stopped them recurring. 

Lilnicki profile image
Lilnicki

Did you type that correctly, 10,000 daily ? That does seem quite a lot?! Methyl at 1,000 causes me headache for a day after the injection, so it could just be you could try a lower dose.

Booksellercate profile image
Booksellercate in reply toLilnicki

Yes, 2 x 5, 000/day. I think it's quite a common dose, especially with sublinguals to start with...but I don't think it worked for me. I might try to reintroduce it at a much lower level at a later date..

Lilnicki profile image
Lilnicki

Ah apologies.... I miss-read your original post and thought you were doing injections !

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