Any in remission after taking Vitamin B12?

Hello Everyone!

I first experienced the awful facial shock of TN years ago when I was sitting with my husband and kids around the dinner table. I started laughing at something that was said and instantly felt like I was being stabbed in the face/rt. jaw with an ice pick. I had no idea what was happening. It sure scared my family as well. So I went to see a neurologist in Hillsboro, OR. and she asked me if I’ve ever had my Vitamin B12 level checked. Turns out that I was low. Not extremely low, but below normal. If you have TN, I highly recommend that you have testing because it does play a huge role in nerve function and it’s a simple blood test. (Don’t supplement with B12 first, or it will throw off the results.)
At first I had B12 shots but then I found out very quickly that I was allergic to something in the solution, not specifically B12 itself. So I switched to Jarrow’s Methyl-B12 SL 1000 mcg 2 tabs per day (chewable) and the stabbing stopped after several days. I didn’t know it then, but I was heading into remission. Over the years I’ve had “warning stabs” every now and then but they are extremely rare. Each time that happens, I get my B12 level checked and it’s below where I need it to be. I found out by trial and error that I need to keep my B12 levels between 850-980 (considered high) in order to not get stabbed. It has worked wonders for all these years…and for that I am extremely grateful.
Dr. Kim Burchiel is my TN neurologist here at OHSU and he said that my TN is extremely rare. In fact, he took samples of my saliva because they are doing research. My gut feeling is that there are many people out there who may have either the same experience as myself (remission with B12) or could be helped by it. That is my wish in making the decision to reach out to you. I can’t say that it will work for you, but at the very least, consider asking your doctor/neurologist to add a B12 level to your next blood work to see if you’re low or not. When you’re B12 deficient, it can also cause symptoms similar to MS, so I was checked for that as well and I don’t have MS. I just thank God that I had a neurologist who had a gut feeling that it should be checked because it literally changed the course of my TN. I’ve been in remission, literally for years. That is my wish for everyone of you because this is a scary pain that no one should have to deal with, but many do, on a daily basis. I can’t even imagine what that would be like, and my heart goes out to you who experience it often. If there is a chance that my post will help even one person, it’s all worth it. Because of how crazy busy my life can get (my husband has leukemia and I prefer to spend any spare time with him), I am unable to have a lot of ongoing conversations with people via this site, but I thought if I could reach out and let people know what has worked for me, it might do some good. God bless you all!

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Hi Cirrus,
Thank you for sharing your story. I know that over the time I have been here (3 or so years?) many have mentioned that they have gone into partial or complete remission because of B12. I would guess that those who are in remission don’t hang around here too much. It is certainly something that every one should try, and one of the few “natural” remedies that I have heard of.

Unfortunately I can’t take a B12 supplement, as they give me severe insomnia. So instead I take dessicated beef liver and dessicated organ meats in a capsule form. I think it helps somewhat but has not gotten rid of my constant atypical trigeminal neuralgia.

Best wishes on continued remission, and I hope that B12 supplements will help others get to a better place.

I needed to take an anti spasm medication called cyclobenzapine 10 mg for my back and legs for 3 weeks. The side effect has been a remission of my normal pain cycle. If my pain kicks up I return to the medicine for a few doses and my pain stops. I hope I can continue to manage my pain in this way and maybe it can work for others with atypical facial pain. I also work with keeping my muscles loose in face shoulders and back always watching my posture and sleeping positions.

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I’ve been taking B12 for about two years now and haven’t had a bad flare up in that time. Now, I’m also taking gabapentin and vitamin D and use the lidocaine patch if the nerve twinges in the slighest. Can I relate it one thing specifically? No. But I’m largely pain free right now.

(fingers crossed)

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Thank you for sharing!

Hi Cirrus, can I first say how great it is to meet someone else for whom B12 was a lifesaver. I sometimes feel like I am the only one in the world and that people think I am imagining it. Even my own doctor, who saw it with his own eyes, didn’t believe it was real and thought it was just a placebo effect. I try to proselytize for it whenever I’m on here if I think it may be relevant for someone.

I think it is a hugely overlooked (and underestimated) area of nerve damage and it was sheer luck that I did my own research when I was first struck down with TN and discovered it as a potential cause. I won’t detail the medical history that led to my B12 being an issue, but like yours, when it was finally measured, it was low, though still considered ‘normal’. In the UK, and in the US too, I believe, the low end of the scale is far too low, and was created historically from a handful of people, ALL with pernicious anaemia, so it’s a very inaccurate and unhelpful scale, but it still persists.

I had to fight very hard, and literally present my doctor with a thesis on the subject, to get shots but I ‘won’ and did get them and it turned my severe, heavily medicated TN around in 3 weeks. That was a few years ago now and though I’ve never completely lost my TN it’s never been as bad as it was then and I manage to live with it just by careful management. I don’t use medication (the greatest gift!) and treat it with a 4-weekly B12 injection (I’ve had to fight for those too).

Sadly, I think many people are probably suffering unnecessarily with TN pain, and others have probably made the condition worse through receiving no treatment for something so easily and cheaply fixed. When someone presents with TN it should be tested routinely, as the very first test. Instead you are lucky to have it tested at all!

Hope your remission continues - and keep spreading the word!

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Thanks for your share. I do know that B12 can be very helpful. I have heard in China they inject B12 right in your face.
By the way Dr. Kim did my MVD last year unsuccessful for me lasted only 1 month. So I do not know how good he really is!
I am on Oxcarbazepene now works 90% of the time, Better in the summer so I am looking forward to it.
Good luck to you Just keep in mind if it does come back Oxcarbazepene is a good one to look in to it.

I am on Ox

I am on B12 1000mg methylcobamine shots every week for years and years now and it didn’t do anything for my TN1 at all.

Ellis.

I am taking VitB12 liquid spray under my tongue.
But I want to address your “this is a scary pain”. I cannot explain to people how scared I am of this pain!
They just nod and will then tell me of the ‘tension headaches’ they get!

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I started taking B12 last month and I cannot believe the difference it has made. So far my pain level is 0. Thank you Lord Jesus.

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I have type 1 and 2 TN and the B12 has put type 1 almost completely into remission! Thank you Lord! I get shots monthly.i was very low, now I’m high, but plan to stay that way!

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Same for me. A lot of relief. Also, thank u Lord.

TN2 for me. This is the first I’m hearing of B12 and you better believe I ordered it before I reached the bottom of this discussion. If it helps just marginally I will be ecstatic. Thanks.

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Hello Naughty, Greetings from Oregon! I hope the B12 works for you like it has for me! I just wanted to quickly say that it’s also important to get your B12 level checked first before supplementing (usually the doctors will throw in an MMA and homocysteine level in with it) to see if you are truly deficient and to get an idea of where you’re at. I had some slight “warning” stabs the other day very briefly (0 pain since then…), but my last recent level came back way too high (1400!) for some unknown reason, so I am adjusting things down slightly a bit between 1-2 chewable tabs of Jarrow’s Methyl B12 1000 mcg every am, to try to get it back in the 800-900 range, which for me is ideal to keep TN at bay. (Before I was taking 2 each am and it has been working well for years.) Don’t ever let doctors insist that you have to have shots. I’m allergic to the stuff in B12 shots and have been fine supplementing with these chewables all these years. I wish you all the best! The good news is that there are options out there for this and I have no doubt that you will find the treatment that works best to kick that pain to the curb where it belongs! :slight_smile: Best wishes!

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Hi Cirrus52:
I live in Portland, Or and have seen Dr Burchiel for TN. He has never mentioned using B12. How did the option of B12 come up with him? Is it something that he knew about or did you find out about it from another source? (ModSupport edit: You can message me directly by clicking on my “avatar”, in this case the S in a circle.)

Thanks for your post.

SwedeP

Thank you for this information. I will definitely have my GP check out my B12 level… Happy New Year and well wishes to u and your family!!

Hi, I am glad that you are in remission. I would like to interject that most people who are in remission are there because of TN going into remission on it’s own without using B-12. Most of us who have TN are not low in B-12. Yes, B -12 is essential for proper function for nerve function, however it is not that which causes TN. It usually caused by a blood vessel or something else wearing away the myelin sheath of the nerve. Have you ever had a MRI scan using a CISS, VIBE, FIESTA, or similar protocol? If not, you may have been misdiagnosed and had something else.
Reasons for Facial Pain

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Vitamin B12 Deficiency Anemia | HealthLink BC.

Hello hlt069, Thank you for your response and I’m very grateful for being in remission, that’s for sure! I do understand that most people who have TN might not be B-12 deficient like I am, and I’ve never stated that B-12 deficiency specifically caused my TN, but I did go into remission after I started taking it, which really surprised me. Over the years I found out by accident that it has to be in a certain range or I’ll get “warning” stabs. All I can say is that for me, supplementing with Methyl B-12 put me into remission so if it can help anyone else, then that was my goal for putting it out there. It is important for anyone to have their B-12 levels checked before supplementing, because the person might not be deficient at all. I did have an MRI before receiving the TN dx from Dr. Kim Burchiel who is an expert in the field (blood vessel compression) and the lightning-type stabbing in my face certainly matched up with TN, according to him. I truly hope that your TN goes into remission soon if it hasn’t already. Personally, I feel it’s one of the most awful dx a person can receive but there is hope (in all different forms) and each person has to find out what works best for them. My hope for you and everyone with TN is that there is a cure…and soon!

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