Hi, I suffer from trigeminal neuralgia, a rare neurological disorder. I have been in remission for over a year but the condition is unmistakably coming back. This has coincided with a period of high stress (splitting from a partner of 40 years with all that entails, i.e. getting a new house, clearing out, selling up and general grief and upset) so it doesn't seem like a coincidence to me.
I have always felt sure my TN is a B12 problem and I get monthly injections which sent the condition into remission and have kept it there until this happened. I'm wondering, therefore, what effects, if any, stress has on B12 uptake or even levels. I tried Googling it but all I got was reasons to take B12 to control stress, not the other way round!
Does anyone know of any adverse effects of stress on B12 - uptake or levels -, or any studies/research on this? I'd be REALLY grateful for any input. if I could nip this in the bud before it deteriorates further that would be beyond fab. Thanks!
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Chancery
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Hi there ! Sorry to read of recent events which must be so very stressful for you. I think we need more of everything when stressed and surely that includes B12 The myelin sheath that protects our nerves has quite a need for B12 - so maybe there is an involvement there somewhere. Someone with endless degrees and more knowledge hopefully will be along soon to help. Also your T3 could be lower too - and from memory that was never tested - only the TSH and FT4.
Do be kind and gentle to yourself - pampering treats are the order of the day
Are you taking a B Complex containing Folic Acid/Folate - as the latter works with B12 in the body and enables it to remain there a little longer I have read - before being flushed out.
Thanks Marz, I'm taking a complex sublingual B12 currently to supplement till I see the doc on Wednesday - can't say it's making much difference though. Although I'm saying that - maybe if I wasn't having it I'd be back to full-shock mode instead of the odd one here and there.
I'm going to ask the doc to do a thyroid test as well; I'll stick my neck out and ask for T3 too - that should be fun.
The sub-lingual is B12 only I believe. I suggested the B Complex to ensure the Folic Acid/Folate is adequate to work with the B12 and keep all the B's in balance ....
Yeah, after I answered you I suddenly though folic acid might be a good thing to supplement, because you're right, my supplement doesn't have it. You know, I don't think I've ever supplemented folic acid; it certainly wouldn't hurt. I'll pick one up tomorrow. Right now, to quote someone I saw recently, I'd eat rabbit droppings if I thought they'd help! X
I think stress throws out every chemical in our bodies.
I can trace my recent ill health (B12 deficiency and fibromyalgia) to 3 major stresses (2 bereavements and fighting a court case to recover money owed to me)
If you get B12 injections through your GP could you explain to him/her what is happening and maybe your doses could be made more frequent ? I don't know if sublinguals or a B12 spray would help you, but might be worth trying.
Yes, Hollyberry, I plan to ask for alternate day injections for a month, but I'm worried that if I get too much B12 it will push my MMA & Homocysteine down, if they are elevated. I'd really rather test them first then I can always argue for increased injections, although if my results prove to be normal I'll probably have queered my own pitch!
I definitely feel my need for B12 increases if I am stressed. I usually have a sublingual spray that I can use to top things up during those times.
I'm very sorry to hear what you are having to deal with at the moment. Trigeminal Neuralgia is horrible, my sister in law had it for a long time, and eventually had surgery at one of the London hospitals. Although they didn't guarantee it wouldn't return, she has been ok for about ten years now.
Yes, pvanderaa, I have experienced that many times. My TN always gets 'sparkier' when I'm stressed, but this last decline has been much more severe than normal; I'm getting full shocks. Maybe it corresponds with the severity of my stress!
I too have awful Trigeminal Neuralgia and think that there may well be a link with B12. I take 4000 mg meth sublingual tablets but would like to have injections too. Interested to know what your B12 tested levels were, as my serum test was 328 and I can't see my GP agreeing to injections on the back of that.
Hi Sasha, my B12 was 384, I believe. (or 383?). It was just under 400 and I used the fact that it was in the grey area to help persuade my doc, but it was hard work. I had to provide a dossier of research to win him over.
So yours is even lower than mine and given that you have TN that's absolutely a good argument for B12 injections. I find that doctors, and even neurologists, seem to have no connection in their heads between TN and B12 but there is a strong one, going back to at least the 50s, if not longer.
I'll also just ask if you know about functional B12 deficiency? It's quite possible that you have that, in which case your serum tests would be 'high' and it would mean absolutely nothing about the state of your B12. That's what I'm just about to see my doc about.
Are you taking anti-convulsants to deal with your TN currently? And have you ever had a period of remission?
I've started reading up about functional B12 deficiency but not really sure how that's all tested. I agree with you thst the serum levels can be misleading and that it's all about absorption. Do let me know if your doctor throws any light on this and I'll do the same.
I'm currently on Tegretol (been as high as 900mg in the last week) and trying to get it down. My TN only started in January this year, and I haven't had any periods of remission yet although there's definitely been an improvement in the last week. I'm not sure if that's linked to my now taking daily Vits D, omega 3 and multivitamins. I had an MRI recently which showed lesions. I have an appointment with a neurosurgeon on Wednesday, but like you, I'd rather cure myself with vits and diet if at all possible.
My neurologist was not particularly interested in the fact that I'm taking Vit B12 either. Like you, I think there's a definite link and I want to explore this before going down the surgery route, if at all possible.
I just can't see my rather unsympathetic surgery helping out with b12 injections so I may have to self inject...
Do let me know how you get on at the doctors. Any shared information is so invaluable.
Hi Sasha, don't lose hope for a period of remission. I just checked my records and I had TN, at full electric shock strength, for 18 months, although for part of that it was actually in remission; my doctor just wouldn't let me come off the tablets! I was on 600mg of Tegretol and 900mg of Gabapentin when I was at full dose, but the pain wasn't fully under control. Within 3 weeks of B12 it was well under control. Didn't convince my doc though.
My remission period has been just under two years, but probably about 2 actually when you count the extra time under my doctor's neurosis about me giving up the tablets.
What kind of lesions did your MRI show up? The standard 'front foci white matter lesions'? I had those but they were dismissed as being "normal for her age". It always kind of worried me, that! Or do you actually have proof of a nerve pressing on a vein, or is it vice versa? I know that's actually quite rare, to see it on an MRI. I don't know if that makes you luckier or not!
I've just heard that it looks as if I have multiple dymyelination suggesting MS. I'm taking sublingual b12 but need to establish whether b12 shots would be useful.
I hope all is ok with you despite your frustrations with your GP.
Oh Sasha, that's bad news, I'm very sorry to hear that. By a weird coincidence I just got Sally Pacholok's "Could It Be b12?" out the library and I see it has a heading "Speculation: does true MS involve a B12 abnormality?" in a chapter about how B12 deficiency sometimes masquerades as MS. Perhaps if you haven't read the book you might glean something useful from it.
Best of luck with your diagnosis. Let's hope they're wrong with their early prognosis. I'll keep my fingers crossed for you.
Thank you Chancery, that's kind of you. I've really been thinking about the whole B12 link myself as I see much debate about the symptoms being the same. My eye tests were clear which is great news so I'll see what happens with the lumbar puncture next week. I do wish it were a bit easier to get B12 shots. I may have to SI though not so keen on that.
I hope that all is ok with you as I know you've had your fair share of hurdles too recently.
Right back at you, Sasha. Hopefully your lumbar puncture will give you a definitive answer. Whichever way it turns out, it's always a relief just to know. Very best of luck XXXX
That's really interesting, pv. It shows that the '400 is normal' level is finally being questioned in the USA - I wish I could say the same for the UK. And I'm definitely in the 10% disaster zone of something - if only I knew what!
Just to add that, part of the characteristics of TN is that it goes into remission and then often comes back worse than before. I do think that it is linked to stress levels as well though.
I'm not aware of any studies around B12 and stress - only that anecdotally many of us do find that we seem to need more B12 to cope with stress but that might not necessarily be because B12 gets used up more quickly - could be to do with some of us having process that handle stress that aren't quite as efficient so it pushes up the amounts needed to handle those processes.
To be honest I think it would be rather a difficult one to design a study for.
Yeah, you're right, Gambit - can you imagine stressing people to then try and monitor their B12 levels? Not to mention the fact that long-term stress is a whole different animal from short-term. I should think any testing would be forbidden just on the strength of subjecting humans to stressants for months being inhumane!
I've always felt the cortisol levels of stress tend to trash everything in sight. No scientific evidence for that one, just the fact that when I get wound up I can't sleep, my gut hurts, I start shaking, and I jump at every loud noise. Keep it up long enough and it's sore teeth, sore joints and catching every infection going. What body system doesn't stress wreck?
Yeah, the army would be a good choice since stress is rather obligatory for them, if they are in combat, and sometimes it's long-term too. I think the problem though would be testing in the field, and also being able to control other factors, like their diet - and drinking!
I've never seen any studies about cortisol and B12, but then B12 is not well-studied full-stop. I had the devil's own problem when I first brought it up with my doc in getting past pernicious anaemia. He never lost that idea either. As far as he was concerned B12 deficiency = pernicious anaemia, and this was when I had trigeminal neuralgia, and low haematocrit, indicating anaemia. I even had irregularly shaped red-blood cells at one point - but he still couldn't see any potential for a B12 problem because I didn't have pernicious anaemia.
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The myelin sheath that protects our nerves has quite a need for B12 - so maybe there is an involvement there somewhere. Someone with endless degrees and more knowledge hopefully will be along soon to help. Also your T3 could be lower too - and from memory that was never tested - only the TSH and FT4.
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