B12 and Trigeminal Neuralgia

[Cankita]

My story follows the usual pattern. Two years, 7 GP’s, 5

consultants, a dozen or more blood tests, 2 ECG’s, 2 chest x-rays, 1 nerve

conduction test, 1 hearing test and 1 brain MRI (involving 2 flights to Glasgow

paid for by the NHS) only to turn full circle to arrive at a diagnosis of

Vitamin B12 deficiency which should have been obvious when my B12 level was 120

two years ago. Finally a diagnosis but then a GP who says the treatment going

forward is injections every 3 months (I have had the loading does). I have

reached the conclusion that only way forward is to do all the research myself

to work out my own diagnosis and treatment protocol which I can then present to

uneducated doctors when needed.

I have already gained a good understanding of B12 deficiency

and its treatment but there is one symptom I have that does not seem to be

widely reported which is Trigeminal Neuralgia affecting the ophthalmic division

of the nerve. Trigeminal Neuralgia seems to be as widely misunderstood by the

medical profession as B12 deficiency but the consensus is that it is caused by

a blood vessel pressing on the trigeminal nerve and wearing away the myelin

sheath which causes ‘short circuits’. In a healthy person the myelin would

simply be replaced or repaired but since B12 is one of components in repairing

myelin it seems reasonable to conclude that a deficiency of B12 would allow the

condition to continue or worsen. Good theory but I can’t seem to find much

evidence (anecdotal or scientific) to back it up.

I would like to establish whether my trigeminal neuralgia is

part and parcel of the B12 deficiency or is a completely separate problem. Does

anyone have experience of trigeminal neuralgia as one of their symptoms or can

anyone point me to any established research?

[Amethyst28]

Hello Cankita,

I am with you on the "usual pattern" having had similar experiences with Thyroid (finally prescribed Levo since 2011) and now currently looking again at B12 due to ongoing symptoms including mouth and tongue soreness, swollen throat, serious jaw pain and strange vision effects, leg cramps, feeling generally dizzy and weak / "unwell".

I had a large amount of bloods taken last Tuesday and due to see GP tomorrow afternoon to discuss results. So we shall see!!

Will also see if I can find any information to help. (I am a Nurse). Where did you read about your theories of the link between B12 and TMJ Pain?

Very interested in your post and following for any updates.

Best Wishes

[Cankita in reply to Amethyst28]

Thanks for the response. I haven't actually read of any connection between B12 and Trigeminal Neuralgia, that's what I'm trying to discover.

There are loads of references to B12 being one of the more important components in the production of myelin (just search 'myelin and B12') and suspicion that the main cause of Trigeminal Neuralgia is the loss of myelin from the trigeminal nerve so it would seem logical to equate the two. B12 deficiency might not necessarily cause trigeminal neuralgia (although it well might) but it may well prevent the body from resolving the issue through its normal regenerative process.

[taka Administrator in reply to Cankita]

Just had a quick check of pubmed and there doesn't seem to be much, sorry. What there is is predominantly from the 1950s-70s and in a wide range of languages (mosty German)... just not in english!

B12 deficiency can cause neurological problems relating to myelin production but I've not come across trigeminal neuralgia as being related to this. Are your B12 injections helping it at all with it?

In short, no clue... sorry!

[Cankita in reply to taka]

Too early to tell at the moment. I have had 8 alt-day injections so far and whilst my mental state and tiredness have certainly improved it hasn't yet touched my neurological symptoms. Then I don't really expect any neurological improvement for quite some time. Good news is I have now actually persuaded my GP to continue alt-day treatment after he initially refused to go beyond the usual 6 loading injections.

[taka Administrator in reply to Cankita]

Yes that is still pretty early on. Fingers crossed it improves with a bit more time. It is great that your GP is continuing beyind the usual 6 loading doses.

[Keylar2000 in reply to taka]

Notably, the Lancet published an article about this, "TREATMENT OF TRIGEMINAL NEURALGIA WITH VITAMIN B12" in Feb, 2954.

[Steap]

mdedge.com/neurologyreviews...

There seems to be a link between it and low vit D too.

[Cankita in reply to Steap]

Thanks for the link. If my TN disappears when all my other neurological symptoms are resolved by B12 then I'll consider that to be the definitive study!

[Chancery]

Hi Cankita, someone mentioned to me tonight on the thyroid forum that there was a thread on here about TN and B12 so I checked it out to see if I could help you. I am a B12 TN victim so I speak from extensive experience! I can tell you my story if you want but the short version is I had TN classic Type 1 for about a year and, through my own efforts, discovered the B12 connection. I had to fight very hard with my doctor to get shots but I did get them and my TN turned around and went into remission in about 3 weeks - I kid you not.

However, I am concerned that your B12 treatment protocol isn't enough. You should have got daily injections for 3 weeks then monthly (That's what I got.) These are the NICE guidelines for treating deficiency. It's a general rule of thumb that docs don't have a clue about TN, other than to throw anti-convulsants at it, and they know even less about B12.

If you've had a B12 deficiency for a while (and yours was even lower than mine, which was borderline) you need the regular injections and the full loading doses even more.

It's great to meet another TN sufferer with a B12 connection (not great for you though!). I'm a bit of a zealot for this. I feel that B12 deficiency is a far more common cause of TN then docs realise and it was a great shame that the research into it was dropped when anti-convulsants were discovered. Let me know if I can help in any way; we're a rare breed!

[Gambit62 Administrator in reply to Chancery]

Chancery, not sure where you get daily as the standard treatment in UK.

This is from BCSH guidelines

The BNF advises that patients presenting with neurological symptoms should receive 1000 μg i.m. on alternate days until there is no further improvement. However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternate day therapy after 3 weeks of treatment.

and this is extract from NICE guidelines

For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

not saying that this is correct for every individual, but the treatment Cankita is receiving does appear to follow these guidelines

[Chancery in reply to Gambit62]

I know, Gambit, thanks! About half an hour after I'd shut my computer I suddenly realised I'd had them on ALTERNATE days for 3 weeks, i.e. 9 injections in total. Then I went onto monthly. I was all prepared to fight for continuing the alternate day injections, but I was already seeing improvement, so I used my improvement to barter with my doc for maintaining on monthly instead of every 8 weeks or, worse, every 3 months. To be honest, I don't know if I could get away with less injections - I'm too scared to try in case the TN comes back!

[Cankita in reply to Chancery]

It's encouraging to hear that TN might be resolved with B12. At the moment it is my most aggravating symptom. I've got used to the tiredness and can almost ignore the numbness in my feet during the day (it is most noticeable when I am in bed) but getting an 'electric shock' by scratching your nose or rubbing your face with a towel is something I don't think I will get used to!

I am surprised to hear that you got daily injections, it was fight for me to get beyond the initial 6 alt-day injections .

[Cankita in reply to Cankita]

Gambit62 confirms my own research which is how I got my GP to continue the treatment. He offered the standard 6 plus 3 monthly and when I went back at the end of the initial 6 I had done my research and quoted the NICE and BNF guidelines. He said he had never heard of any treatment beyond the initial 6 and wasn't comfortable prescribing more and would ask advice from the neurologist who initially requested the treatment. I put forward all the research I had done and left saying that I was not at all happy and that he left me with no choice but to buy my own Hydroxo and inject myself which I did not consider the ideal treatment as he was what the Americans call my primary care physician.

Whatever I said must have hit home because later that evening he phoned me and said he would give me a further 6 injections pending advice on treatment from the neurologist. The following evening he phoned again and said that my case had been discussed at the partners meeting (by which time someone must have actually looked at the guidelines) and that he would continue the treatment until there was no further improvement in my symptoms.

Victory! But .. if I hadn't done the research and hadn't been prepared to stand my ground I would have been sent away without the proper treatment. My research also led to the discovery that if my B12 deficiency had been treated according to the guidelines two years ago when it was first discovered I would not now have any neurological symptoms. That's another story for another time!

[Chancery in reply to Cankita]

Sorry, Cankita, entirely my fault. Like I said to Gambit above, I realised a soon as I shut my computer that I might have had them on alternate days. I asked my partner, whose memory is a whole lot better than mine, and he confirmed they had, in fact, been every other day. But I was right about the 3 weeks. I had nine injections in total. Actually, I think I had 10 since they came in a pack of 10 and my doc was up for giving me one last injection! I remember I had it on a Monday (why the hell I remember that, I don't know!), which would kind of back up that I had 10.

Again, like I said to Gambit, I used the NICE guidelines, and two or three other sets - I had a huge dossier of research which my doc made me give him before he would try it - to back up my argument that I should go on getting injections on alternate days but as I was already improving I used it as a negotiating tool to get monthly injections - "Well, if you're not going to continue alternate injections like it recommends in the guidelines then how about giving me monthly injections?" and I had all this (I think anecdotal) evidence on how deficiency was better treated with monthly injections. I think he gave me them to shut me up!

I think what you say about being treated promptly is crux. I think that's why I was 'lucky' that I was treated relatively promptly when my TN was diagnosed. I had diagnosed it myself off the internet when I wasn't happy with my dentist's take on the pain and I was on anticonvulsants within a fortnight. I then started researching it like a dervish and eventually found the B12 connection. I can't remember how long it took me to ask for B12 but it wasn't a full year, I don't think, so I'm sure that helped too. Some people go years without diagnosis and I think by then the damage is too far advanced for B12 to be able to reverse it properly. I think the reasons for my B12 deficiency were fortunate too, in that they were kind of artificially induced (long-term VLFD diet) rather than an inherent weakness in my own biology so I think that maybe helped make me more resilient too; I reckon my body was already trying to repair itself because when my B12 was tested I was borderline, not officially deficient like you were. I don't doubt had it been tested when I first had TN it would have been officially deficient, I'm sure it would have, but like I say my diet had already improved by then and thus I think my B12 was probably already better, if still very low.

Of course, I'm saying all this but quite possibly the TN will come back tomorrow and I'll be stuck with it for life! My doc is convinced it is a placebo effect - the longest known placebo effect in history - but that's doctors for you.

Best of luck with your treatment - hope it works for you.

[Chancery]

P.S I should just say I had the huge dossier of research for ages and only threw it away recently. Sorry about that. I could have been more coherent about my own treatment but also given you the names of the various studies I used. Most of the biggest ones were from the 50s but I did have two modern ones. I can't remember one of them, although I suspect it was Japanese, but I know I had an Australian one from, I think 2002(ish) which they'd tested on Capuchin monkeys. I remember this because my doc was very sneery about how it didn't prove anything because it was only on monkeys, and I'd shut him up by pointing out that no-one tested things on humans any more so what else could I cite? I got most of my info from PubMed so I'm sure if you wanted to read the studies that have been done just type in Trigeminal Neuralgia, B12 (that's what I did) and plough through them all.

I'll also just mention that I got my initial 'tip off' from Sally Pacholok's book "Could it Be B12?" In there she mentioned a man with B12 deficiency who had TN and it was so rare to see the disease mentioned that I jumped on it and took off from there. If I hadn't read that book I would never had made the connection, got the data to fight my corner or had the first clue it was my problem. If you don't know the book I recommend it heartily. X

[Banjodeb0914]

I had atypical left side facial pain (neurologist called it trigeminal nerve irritation) after some failed cracked root canal tooth procedures. My B12 was 146 when I went through the emergency room. I felt like I was dying. I also had shingles a few months later on the same left side of my face. Fast forward 18 months later and I am doing well now. No more facial pain, just itching occasionally. I supplement with taurine (which is supposed to help nerve pain), D3, and 9,000 mcg of oral B12 weekly. I tried Lyrica in the beginning for the atypical facial pain, but had a bad reaction so that is why I ended up trying the taurine instead. I saw improvement after about three weeks of starting the taurine. I hope you feel better soon.

[Amethyst28]

Dear Cankita,

Just found this link and thought of you:

mdedge.com/neurologyreviews...

[InfoAddict]

Hi Cankita, How have things been going with your Trigeminal Neuralgia experience? Has the B12 been helping?

I just started getting the TN pain on October 8th (2017). I have noticed when I take B12, it substantially reduces or eliminates the shocks I get (TN1). I haven’t seen my GP yet. I have an appointment with her next week. Although I believe I inadvertently triggered this condition by a week of binging on too much sugar caffeine & theobromine; I have long suspected I have a b12 deficiency. I do feel I need to get my doctor to order an MRI to rule out the cause of the condition being something like MS or a tumour.

I look forward to finding out what you have learned and expereinced with TN and B12.

[Psulion]

Just wondering Cankita if your tn has improved. Just diagnosed with low b12 no anemia, and I have some tn issues along with everything else.

[Keylar2000]

I learned about my B12 deficiency years ago when researching SIBO. I suffered Rosacia for years without treatment, but a friend mentioned the connection. I'm in a small town and my GP's were unaware of a condition called SIBO (Small Intestinal Bacterial Overgrowth). SIBO is also co-morbid with Thyroid deficiency as well. After bringing a printout of the National Institute of Health's publication about Rosacia and SIBO to the GP, I was able to pry a test request from her - only to find the local hospital unequipped to administer the test. One symptom is low B12 deficiency due to malabsorption.

I found SUBLINGUAL B-12 vitamins in my local drugstore vitamin section. I decided if I was low, perhaps I should try taking them. The response was immediate and instant! For 5 years, I used them as "wake-up pills" because I had difficulty waking in the mornings. I have since been diagnosed with Fibromyalgia and Trigeminal Neuralgia by specialists in other fields after my GP flailed and sent me wandering for diagnosis.

I have received ZERO treatment from my GP for either condition. The local doctors are clueless and helpless. But I have found B12 SUBLINGUAL vitamins to be a huge help in my own treatment. Since I started taking mine daily (maximum available dosage and ONLY by sublingual pill) - I have no relapses of TGN unless I fall off the B-12. I also fought for access to treatment for SIBO through another way: Rosacia is now treated with the non-absorbed anti-biotic medicine that kills the SIBO. Hopefully, this helps absorb more B12 naturally in addition to my supplements .

I also stumbled onto the (FDA approved) TENS treatment method as a last ditch effort for TGN. I use it for other nerve pain in my back and for the fibromyalgia. While traveling without my B12 pills, I had a TGN attack and used the TENS in desperation. It did help. I prefer not to stick electrodes to my face but everyone here knows how desperate we can become when in that horrible pain.

TRY THE SUBLINGUAL B12 VITAMIN PILLS. THEY HELP MORE THAN ORDINARY B12 PILLS IF YOU AREN'T ABSORBING PROPERLY FOR WHATEVER REASON.

[Lilacc]

I know it’s a while since you posted but I’ve only just seen your request for info. As far as more recent research goes, a study looking at the connection between B12 levels and trigeminal neuralgia was done in Australia a few years back. You can find it on the TNAAustralia website or just google Irene Wood and b12. The results were promising - ie many if not most participants found their pain reduced significantly after taking b12 (sublingual and/ or injections ).

I also found some reference to it on the Facial Pain Association (USA) website.

Hope you’ve found some help - it’s a horrible condition I know.

[subtlewhisper]

I was diagnosed with Trigeminal Neuralgia in the late 90s.The pain was almost constant.

I wasn't diagnosed with Pernicious Anemia until 2008.

My B12 was at 68, and I was started on injections. My numbers were slow to climb, and my injections were increased. For a while I was at three needles a week.

When my numbers started to climb, my doctor ordered my shots down to once a week, then my levels started to decline.

Eventually I got into the mostly successful routine of a double shot once a week.

After a couple of years of B12 injections my Trigeminal Neuralgia went into remission.

I believe the high doses of B12, over a prolonged period of time repaired the myelin sheath.

[RayRo]

Hello Everybody, I just wanted to share my story on here as this link is where I started investigating B12 for Trigeminal Neuralgia. In the summer of 2020 I started having a feeling in my ear like there was a bit of fluff in it, all summer it was there and then it started to hurt by the autumn, like an ear infection, in my ear and part of my jaw. I went to the doctors to get some antibiotics and the Dr looked in my ear and said it wasn't infected so I should go to the dentist which I duly did. The dentist said my teeth were fine and that it was probably TMJ a condition affecting the Temporomandibular Joint. It continued bumbling along, painful sometimes and sometimes not so much but not too bad. Then in January 2022 it erupted into excruciating pain, 10 to 15 times a day (like childbirth, so so painful I couldn't speak and seemed to moan and rock while it was going on for 5 minutes and then it would go away for an hour maybe and then another terrible 5 minutes. Reluctantly I rang the doctors and he diagnosed Trigeminal Neuralgia and prescribed epilepsy medication (2 a day, increasing every week till I would get to about 10) I duly started taking the medication (TN is called suicide disease as its so painful and I had no hope at that point) and started looking on Duck Duck Go for an answer and found this post which led me to buy a couple of books and find a buried study from the 1950s which showed good results plus other more available studies which mentioned TN but weren't specifically studying it. Even the books don't really say it works but I can say now that it does. I found a UK online skin clinic with a doctor that would send out a box of B12 and all the kit to get me started which arrived on the Friday and by the Saturday/Sunday there was a noticeable difference in my pain level. I ignored the every two days and did every day as it was just unbearable and reading testimonies where people were saying "I've had this for 7 years and the epilepsy medication although it turns me into a zombie and I can't drive or think, is the only thing that helps" just really made me want to die to be honest. Anyway less than two weeks down the line of daily IM and I was pain free. I can't believe it! I went back to the Dr and had blood tests, telling him that I was 'taking B12' rather than self injecting as I didn't want to alarm him (!) and all my bloods were fine (sky high B12 of course which he was worried about......he was so disinterested in my recovery and told me that I could just drop the epilepsy meds when I felt I wanted to (you're not supposed to just stop them dead but he didn't know that, luckily I had read up). I left a copy of Dr Chandy's book on the surgery coffee table for them. I do feel that I am rather responsible for my deficiency as I had given up dairy and eggs and don't eat much meat, however I think it is more complicated than that and having read that you can't metabolise B12 from the diet if you don't have enough HCL (I have acid reflux and alternative practitioners believe that this is an HCL shortage rather than a valve malfunction) I am trying to do better with my diet and combat that in order to help. I am down to IM a couple of times a week but can't leave it longer than that as the neuralgia starts to come back but I am hoping to try and eek it out a bit more to weekly at some point. I wanted to say thank you to you lovely, caring, sharing people on health unlocked as I wouldn't be in such a good place if I hadn't found this message board. xxx

[Donna1962carol in reply to RayRo]

hi Ray

I have been suffering with this evil disease since last year.

Do you think B12 vitamins would offer me any help at all? I can’t get the injections

[RayRo in reply to Donna1962carol]

Sorry for this late reply! I think if you can't get B12 injections then the best way to take it is sublingually so your liver doesn't filter most of it out, there is a very good one from a company called Vimergy. However its pretty expensive and I'm guessing you would have to take quite a lot to get the required amount. x

[Litatamon in reply to RayRo]

I was diagnosed with it, after years of excruciating pain. The words moaning and rocking hit home.

Fortunately my b12 deficiency was found at almost exactly the same time as my MRI.

Everything with it disappeared not long after loading doses. Poof. So it is sad to know people are suffering needlessly.

Do note that trigeminal neuralgia can have remission periods. But it has been three years for me. I have had maybe two times where I could feel it trying to come - jut trying , nothing like before - but I have just tightened my schedule.