HELP! - Doc demands convincing data for B12 treatment

I was diagnosed with Trigeminal Neuralgia 7 months ago. This is a neurological disorder which means you have damaged myelin sheaths in your brain which causes extreme electric shocks in your face. It is a rare condition, incurable and degenerative. Because of the degenerative part I am desperately trying to find out what may have caused it. To this end I requested B12 tests as I thought I might be deficient.

After a long hard fight and many lost test results I FINALLY got my result, which the doctor dismissed as 'normal'. However it was, in fact 384, which by many experts' standards falls into the 'grey zone', i.e. it is under the 400- 500 most of these people think is safe & healthy.

The trouble is, my doctor won't treat me. He feels the result is normal and he says I have to prove to him that there is good cause - from reliable sources - that my 380 merits B12 injections. I tried arguing that they can't do any harm, while leaving a deficiency would, but he remains unconvinced and mistrusts 'expert' doctors outside the mainstream.

Does anyone here have ANY data from places like PubMed or the BMJ or ANYWHERE reputable that might convince him to let me have injections? The only thing I have found so far is that Japan has a minimum normal rating of 500, which would place me as deficient in Japan!

I feel desperate about this as both my mother and my grandmother both suffered from possible pernicious anaemia/deficiency. I have had depression/anxiety type symptoms for many years, plus tiredness and forgetfulness which had got a lot worse before the TN struck. I also had other signs which I consider as possibly tell-tale, like dry skin, brittle nails, gastric problems, restless legs, muscle cramps. I agree they are too generic on their own, but when combined with Trigeminal Neuralgia they become much more serious.

Anyway, I am new here and would be grateful beyond words for any help. At the moment I feel completely overwhelmed, like a character in a fairy story who has been told to bring back three golden grains or a snowball in summer. Anyone???????????

P.S. I had a 0, normal result for F1 Antibodies, and my folate is 7.8. I have no idea if that folate result is good or bad but he said that was normal also.

47 Replies

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  • A few years ago I feared I might have something similar to TN. Severe facial pain - always described it as being like a bullet, not that I have the experience to make the comparison. Incredibly sensitive to coolth or draughts. Wore a hat and scarf even indoors in my office.

    Since being about eight years old, I have had tinnitus, and that had worsened considerably. Various sources suggested B12 supplementation could help some tinnitus and I decided to try it. Made not a scrap of difference to the tinnitus. But, over time, the facial pains subsided. After a few months I realised that both the frequency and the intensity of the pain had reduced. If ever I noticed even a slight twinge, I'd grab some B12. I have almost entirely recovered from the pains.

    I took some photos of me full on face, left and right sides, and drew onto them to show doctors where I felt the pains. A surprisingly large portion of my left face had coloured lines on it. Medics did an MRI of my head, offered tramadol (which helped a bit - made me care less about the pain, and I was pretty tolerant of it), but little else.

    No proof whatsoever that I had low B12. None that it resolved my problem. Just a strong feeling that it is a possibility.

    I wish I had been tested for B12, even the standard serum test (active B12 not having been available at the time. As it is, I still take fairly regular B12 tablets. I also wish I had found an answer to tinnitus. :-(

    However, I am really a visitor here from the Thyroid UK part of HU. I later realised that throughout this time I was also slowly deteriorating with hypothyroidism. Worth a thought.

    Rod

  • Hi Rod, that was very interesting that it dealt with your facial pain. I wish I could find so simple a cure! Unfortunately I think it's a bit late now for mine, but that is one of my concerns - time is passing and if the deficiency IS responsible we're sitting here doing nothing, making the chances of it being irreversible even more likely. Sad.

  • I consider myself very lucky. Certainly you are right that doing nothing is ridiculous and expecting you to prove the appropriateness of B12.

    Responding if a patient happens to deliver proof of something is fine but what is happening to you sounds more like dereliction of duty.

    Rod

  • He's a good doctor, generally, but not great when you are suggesting anything that smacks of 'faddy'. He has a hatred of quacks and the like, so if you are suggesting something he can't see a good argument for he digs his heels in. I just need to win him over, but I have to admit I resent this. I have no energy for fighting medical professionals, but sadly that's what you have to do, all too often.

  • I quoted the NICE guidelines which state if there is unexplained peripheral neuropathy then to treat aggressively with B12 injections. Even then it was a struggle but I managed to get 4 injections over 2 weeks, for my husband. It has helped him though so hopefully when he reports back to his GP he may be prescribed more.

  • I had been going to ask 'what are the NICE guidelines?' but I see someone else has provided them below - so thanks for that tip, I'll look it up straight away!

  • There is an article in the BMJ online. Vitamin B12 Deficiency by Hunt et al. That clearly shows the serum b12 test is not doing the job and gives your doctor information on testing and alternatives.

    One of the aims of the PAS is to improve diagnosis if b12 deficiency and this research paper covers that aim. The PAS are not promoting it.

  • Hi Poppet, thanks for the reply. I'm not able to access the BMJ archive. Do you have a link, or know somewhere where I can read this?

  • You could read, and print off the British Society for Haematology's new Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders, it gives info on how to test further if symptoms suggest a functional B12 def, and to start treatment if symptoms are of neurological nature see:

    bcshguidelines.com/document...

  • I did this for my doctor. The serum result is unreliable, this proves it.

  • There is some (not much) evidence that B vitamins can help with pain/ Trigeminal Neuralgia, see:

    B vitamins relieve neuropathic pain behaviors induced by infraorbital nerve constriction in rats.

    Kopruszinski CM1, Reis RC, Chichorro JG.

    ncbi.nlm.nih.gov/pubmed/229...

    Abstract

    AIMS:

    There is mounting evidence that use of B vitamins can help control neuropathic pain. This study investigated if treatment with B1, B6 and B12 vitamins, alone or in combination with carbamazepine, can ameliorate distinct nociceptive behaviors in a model of trigeminal neuropathic pain.

    MAIN METHODS:

    Male Wistar rats were submitted to infraorbital nerve constriction or sham surgery and received a 5-day treatment with one of the B vitamins, a single carbamazepine injection or the association of both treatments and were tested for facial thermal and mechanical hyperalgesia at different time intervals.

    KEY FINDINGS:

    Repeated treatment with B1 (thiamine), B6 (pyridoxine) and B12 (cyanocobalamin) vitamins (at 180, 180 and 18 mg/kg/day, respectively, for 5 days) prevented the development of heat hyperalgesia after infraorbital nerve injury, but only B12 and B6 treatments attenuated cold and mechanical hyperalgesia, respectively. A single injection of carbamazepine (30 mg/kg) significantly reduced thermal, but not mechanical, hyperalgesia after nerve injury. Combinations of lower doses of each B vitamin (B1 and B6 at 18 mg/kg/day and B12 at 1.8 mg/kg/day for 5 days) with carbamazepine (10mg/kg) markedly reduced heat hyperalgesia after infraorbital nerve injury. Treatment with B12 (1.8 mg/kg/day) combined with carbamazepine (10mg/kg) also synergized to attenuate cold hyperalgesia at some time points, but combination of B6 (18 mg/kg/day) with carbamazepine (30 mg/kg) failed to modify mechanical hyperalgesia.

    SIGNIFICANCE:

    We suggest that B vitamins might constitute a relevant adjuvant to control some aspects of the pain afflicting patients suffering from trigeminal neuropathic pain.

    full free text:

    sciencedirect.com/science/a...

  • Another good one, thank you - you're on a roll! I couldn't get the PUBMED free text to open but you've kindly provided a link with the full text. You're an angel (and I never say that to anyone!). Thanks again.

  • This is a really good one, Marre, many, many thanks for it. I'm going to print it off and have a read right through it. If I can undermine the argument that normal means normal, I reckon I'm in with a chance. What I'm up against here is a doctor treating results rather than the patient!

    ETA: Sorry, didn't realise this would reply out of order. I'm talking about the first one here - the haematology paper!

  • Hi chancery,

    So sorry to hear about your pain. My sister in law had the same thing, and was just being given stronger and stronger painkillers for it. Eventually she felt so tired all the time (from the amount of pills). She did find a doctor who would operate for relieving the pain. One of the London hospitals, I believe. She may even have been made a case study for the surgery, as she had to go back to the hospital afterwards to speak to other patients. Perhaps you can ask your own GP about this option? MariLiz

  • Hi Mariliz, thanks for your reply. Unfortunately I don't qualify for the MVD op (if that's the one you mean) because my MRI found no vascular compressions (the most common cause of TN). This is a problem lots of TN sufferers find themselves in - a 'clean' MRI and no other options than meds.

  • Hi Chancery,

    Yes it was compression, but I believe it was a nerve that was being compressed, maybe by a vein. Sorry my suggestion was no help. Do hope you find a solution soon, I know from my sister in law how very painful TN is. MariLiz

  • I can't be helpful but I do sympathise as i have this as well. I never thought of taking B12 to help it though. Might try it. BTW my husband has PA, not me so I can take it in pills.

  • Try the B12 spay you can get it from amazon about £12. You spray it under you tong 4 times. It suposed to be absorbed into you bloodstream bypassing the need to get your b12 from your food. Worth trying if you feel an improvement change your doctor. BTW my wife was nearly diagnosed with TN. When brain surgery was mentioned we paid to see a specalist who told us it was not TN but agreed she had nearly all the symptoms. We then went down the b12 route and she never looked back and has injections every 12 weeks and has been fit and well ever since. That was several years ago. Good luck stand up to your GP or sack him and get another one.

  • That's great news for your wife, Rory - wish I could land a similar result! Makes me all the more determined to at least give B12 a try. I have got the tablets/spray versions on the back burner if I can't get the doc to play, but they are supposed to be less efficient, especially for people who are already damaged, so I really want to pursue injections.

  • Chancery, Please keep in mind that if you begin B12 on your own in amounts that are effective, it will probably alter the results of any further testing you manage to have. Catch-22! Best wishes,

    Leilani

  • Hi Leilanilea, yeah, that's just occurred to me, but as I don't actually want any more testing since they all seem unreliable too - I'd rather just go straight into treatment - I figure that should be ok. Once I'm on treatment (thinking positive here!) it will affect results anyway, so I figure I should be okay. What's really sold me on just going ahead is that I've only had two doses and have already noticed a drop in mouth pain, which is a phenomenal result. I'm loath to give the possibility of that up!

  • Hi Chancery, I sure can understand your wish to continue on--Best Wishes, Leilani

  • Here are some extracts from the NICE guidelines for B12 and folate deficiency. They are a little confused as it is driven by presentation of anaemia though if you read it in full it also acknowledges that anaemia may not be present.

    cks.nice.org.uk/anaemia-b12...

    Under symptoms - for B12 deficiency it states

    "Suspect vitamin B12 deficiency if the person reports unexplained neurological symptoms (for example paraesthesia, numbness, cognitive changes, or visual disturbance)."

    .....

    "Information on the specific symptoms of vitamin B12 deficiency and folate deficiency are based on expert opinion in a Canadian guideline [British Columbia Medical Association, 2013]and a review article [Hoffbrand and Provan, 2007]."

    If you go to the article then there are links to the sources

    As sources for symptoms the article mentions

    "Information on the typical signs of vitamin B12 deficiency is based on expert opinion in review articles [Smellie et al, 2005; Galloway and Hamilton, 2007; Hoffbrand and Provan, 2007] and a medical textbook [Longmore et al, 2007]."

    Under interpreting results the guidelines say

    "Interpret the results of the serum vitamin B12 test taking into account clinical symptoms and the following limitations:

    The test measures total, not metabolically active, vitamin B12.

    The levels are not easily correlated with clinical symptoms, although people with vitamin B12 levels of less than 75 picomol/L (approximately 100 nanograms/L) usually have clinical or metabolic evidence of vitamin B12 deficiency. In most people with vitamin B12 deficiency, the serum vitamin B12 level is below 150 picomol/L (approximately 200 nanograms/L).

    There is a large 'grey zone' between normal and abnormal levels and reference values (and units) may vary between laboratories.

    Clinically significant vitamin B12 deficiency may be present even with vitamin B12 levels in the normal range, especially in elderly people.

    Rare cases of false normal vitamin B12 results have been reported in the presence of high titres of anti-intrinsic factor antibody in people with megaloblastic anaemia or subacute combined degeneration of the cord. Therefore, the diagnosis of vitamin B12 deficiency should also include evaluation of the person's clinical state and other laboratory findings."

    and by way of back up for the recommendation above it cites:

    " Vitamin B12 serum concentration

    The recommendation for the interpretation of vitamin B12 serum concentrations is based on expert opinion in review articles [Hoffbrand et al, 2001; Galloway and Hamilton, 2007] and a Canadian guideline [British Columbia Medical Association, 2013]."

    In the BCSH guidelines that Marre sites these are the key recommendations.

    The first and 4th are probably the key recommendations here.

    "The clinical picture is the most important factor in assessing the significance of

    test results assessing cobalamin status since there is no ‘gold standard’ test to

    define deficiency.

    Serum cobalamin remains the first line test currently, with additional second line plasma methylmalonic acid to help clarify uncertainties of underlying biochemical/functional deficiencies. Serum holotranscobalamin has the potential as a first line test, but an indeterminate ‘grey area’ may still exist. Plasma homocysteine may be helpful as a second line test, but is less specific than methylmalonic acid. The availability of these second - line tests is currently limited.

    Definitive cut-off points to define clinical and subclinical deficiency states are

    not possible, given thevariety of methodologies used and technical issues, and

    local reference ranges should be established.

    In the presence of discordance between the test result and strong clinical

    features of deficiency, treatment should not be delayed to avoid neurological

    impairment.

    Treatment of cobalamin deficiency is recommended in line with the British

    National Formulary. Oral therapy may be suitable and acceptable provided

    appropriate doses are taken and compliance is not an issue.

    Serum folate offers equivalent diagnostic capability to red cell folate and is the

    first line test of choice to assess folate status."

    The guidelines come with about 10 pages of references to studies - though some of these relate to folate rather than B12 deficiency as the guidelines cover both.

    You might also find it useful to look at "Could it Be B12?" Sally Pacholok and/or 'Pernicious Anaemia - the forgotten disease" by Martyn Hooper. Both books are aimed at raising awareness of B12 Deficiency, its prevalence, its consequences and the fact that people don't all respond to treatment in the same way (and any good doctor would be aware that people respond differently to treatment for just about every illness you can mention). A lot of both books are about individual cases but both also contain a lot of references to studies that have been done.

    Good luck on speaking to the GP - wish I had a magic wand that I could wave to banish ignorance completely but ...

  • Hi Gambit, many, many thanks for the detailed reply. I've had a look at the NICE report and I could maybe add it in (maybe selectively!) but I can't see it convincing him. What exactly IS it? Is it a Canadian health guideline of some sort? If so, who are they exactly? He's going to want to know they are legit.

    I already have the two books you mention but they are not mainstream enough for him. He mistrusts doctors who, in short, he sees as duping the needy. He's going to be a tough sell, I fear. That's why I'm trying to find something he might respect. Unfortunately these 'normal' results of mine are complicating the issue. Ironic, because I am taking more and more dangerous, strong, side-effect nightmare anti-convulsants to control the problem but he won't give me a simple harmless vitamin!

  • If your GP is based in the UK and paid by the NHS then he should regard NICE as an authority

    nice.org.uk/about

    NICE = The National Institute for Health and Care Excellence.

    It was set up years ago by the government/NHS to review literature and case studies relating to medicine and provide guidance on what treatments are likely to be most effective and hence should be followed by GPs and the Health Service in the UK. It's changed its name a number of times over the years.

  • Oh, it's British? Excellent. That's a great help - thanks!

  • Sorry about this but need a rant about the attitude of your GP ... who shows every sign of being a narrow minded biggot and a prime candidate for being sent back to doctor school to learn how to apologise (article I saw in papers earlier this week on proposals to train doctors and nurses in the art of apologising because they are so bad at it - think it was Tuesday - was certainly in the Times ... which I really buy for the x-word and killer sudoku :))

    Did he/she actually look at the books or just dismiss them out of hand? Both contain a large number of references to medical research studies in appendices of each chapter ... which was what I was referring to rather than the book itself.

    Martyn Hooper's book is published by the Pernicious Anaemia Society - a registered charity in the UK. Whilst its size and resources are not on a par with organisations like Cancer Research it undertakes a similar range of activities including sponsoring research. Would your GP take the same attitude to something published by Cancer Reasearch?

    I believe 'Could it Be B12?' has a similar relationship to a charitable organisation in the US. Sorry but don't have access to my copy at the moment as it is with a friend.

    Neither of the authors have an agenda with a drug company - and if they did they'd be mad to choose a B12 manufacturer - B12 is definitely one of the cheaper drugs on the market - so not a get rich quick formula.

    Lots of adjectives that I could use to describe your GP but my morning fix of B12 is just starting to kick in now so starting to feel a bit mellower.

    Really hope you can manage to get through to your GP but do bear in mind, if you can't, that you do have other options, such as self supplementation ... and injections aren't the only way of doing that. But whatever you do do, definitely keep a copy of the last set of blood tests and put write down a list of all of the symptoms that you currently have for future reference.

    A check list of symptoms is available on the PAS website

    pernicious-anaemia-society....

    You may also find the B12 Deficiency support group website useful - has a lot of information on B12 deficiency - including research articles. Again another UK registered charity ...

    b12d.org/

  • Hi Gambit, I definitely know where you are coming from with your doctor rant. This doctor I have now is actually quite good - he does listen and consider what you say - but cursed with the same problems many of them have - not least a reluctance to believe anything they didn't learn for themselves, combined with a singular lack of knowledge in many fields!

    I have to admit I found my visit to him very depressing, chiefly because it went exactly as I expected. It sounds crazy but I was dreading a low 'normal' B12 result because I knew I would have a fight on my hands. I was hoping for either a result so bad it couldn't be ignored or one so high I could be sure I was fine and score it off my list. But sure enough it turned out to be in the dreaded 300s, which I somehow knew it would - I don't know why. My illogical brain tells me it's because I already knew there was something wrong with my B12 but that it wasn't wrong enough to cause the more typical pins and needles etc.

    Personally, I feel that's how I've ended up where I am, because it's been a low grade problem for many years, which has led to this sneaky myelin damage in my brain. My grandmother died of Alzheimer's and as soon as I started suffering with brain fog in my forties I started worrying. The deterioration had ceased to be funny by 50. But this new problem of TN is such a catastrophic diagnosis and is so rare that it doesn't really show up on B12 deficiency lists often, because it's not as common as many other symptoms, but I really do feel there's something to this when you combine it with all the other problems I've had over the years that have often seemed inexplicable. Little things like constant brittle nails that got deeply ridged in my forties. Constant dry skin. Depression, phobias, anxiety. None of them were important enough for any doctor to take seriously on their own but I feel the TN changes all of that and they should be taken seriously now as part of a bigger picture.

    I didn't actually show him the books, incidentally, I just told him that's where I'd read it, but he didn't know either of them and when I reassured him that they were written by doctors and nurses, and the president of the anaemia society, and had no affiliation to a business that I knew of, he told me that if I brought him in some evidence to prove it had a scientific backing (to treat someone with a normal result) he'd consider treating me, so the ball's in my court. I just want to put up a convincing argument because I want to treat this aggressively, as if it is a real problem. I don't want to go at it half-heartedly because I want to stave off more damage before it is too late.

    Anyway, thanks, as ever, for all the links. I mentioned Dr Chandy to him as well but all I got was a lecture on dubious real doctors! I think he needs to see some hard facts - not an easy thing to provide for such a tenuous illness as TN, with even more tenuous connections to B12. Although that's due much more to the fact that virtually no research has ever been done on TN rather than because the connection's been tested and found wanting. Anyway, thanks for letting ME vent. I really appreciate a listening ear.

  • I really ought to go back and look at the NICE guidance on depression - something I've suffered with almost all my life and I just find it really difficult to believe that there aren't any references to the possiblity of B12 Deficiency being a cause ... as mine has gone in the last six months since I started treating myself at the dosages that I needed - which are much higher than the standards ... an issue in itself. One of the things that tipped me over the edge was being given, again the standard test for depression that the print off and realising for the first time that you could easily score over 20 from being B12 deficient without actually having anything that I would have recognised as depression ... my GP is a really caring individual and I must have been with him about 30 minutes and he wasn't kicking me out I just couldn't bear wasting any more time beating my head against a brick wall.

    I mainly use a nasal spray but I do also use sub-cutaneous injections ... and if I haven't topped up my B12 for 8 hours then I start to get quite cranky - usually I have a spray in the middle of the night but last night I didn't so cranky was order of the day. I did a sub-cutaneous injection just before I started typing and actually by the time I got to 'lots of adjectives' the B12 was kicking in and I was really starting to feel less cranky and mellow out.

    It is really difficult to get to grips with how much effect a vitamin can have on your life and if you haven't seen it yourself you don't believe it. I've never really hidden my depression from people so people that I work with and play bowls with have really noticed the difference in me ... I don't think I could really believe it when I got to the point where I realised that actually the black dog was no longer howling at my feet.

    Unfortunately it also creeps up on you so slowly ... and can manifest itself in so many ways. I'd probably be dead by now if I hadn't had a fall at the end of 2012 and had to be hospitalised with a broken ankle ... which was where a blood test was done that showed I was B12 deficient - but I haven't been able to get hold of the blood test. Looking back through the notes from the hospital it probably got picked up and tested because my MMA was astrononically high at one point in one of the printed blood tests. I will be eternally grateful to the consultants assistant who drew his attention to the comment in the notes otherwise I'd probably have been discharged none the wiser ... though I wasn't really any the wiser ... was a teaching hospital so 'what does B12 deficiency mean' and the only thing I remember from the answers was something about irregular bowel movements ... so if that's the level of knowledge that is out there in a teaching hospital it's no wonder things are so difficult.

    Anyway, started out with the NICE guidelines - NICE can be quite controversial at times but generally they get things right however they are trying to simplify and provide digests for GPs and the like and sometimes the GPs don't bother to go behind the very top-level because my experience of problems has been that the answer was there in the guidelines but just at the level below the one the GP was looking at - handing them a copy of the guidelines relevant on one occasion did shut the GP up on a drug combination that I wasn't happy about so hope that you get some results from pointing your GP at that.

  • Ah yes, depression's a weird one. A couple of times in life I've sort of snuck it into conversations with doctors as a passing mention; I've never had the guts to bring it up as a serious problem. I've always been too ashamed of it. But it's always been my experience that none of them pick up on it or ask you about it. Ever. It's like it's such a general thing that none of them ever take it seriously. Either that or it's such a can of worms they don't want to entertain it. With this complaint of TN, one of the things they can use to treat it is an anti-depressant and I've been itching to try it, partly because I have such ferocious side effects from the anti-convulsants but partly because my little heart beats faster at the idea of taking something that just might lift me out of my constant sub-existence doldrums.

    As I've got older I've slid further and further into it and it's got really frightening. Again, with the anti-convulsants, which can cause "suicidal thoughts", I quote from the packet insert, this has got even worse yet again, so much so that I have occasionally despaired of being left alone in case I take a walk off my fourth floor veranda just on a whim. I was on a drug called Lamotrigine for a while, which was a real nightmare, and it really changed my personality, which I scarily didn't realise till I came off it. But it made the suicidal thing worse still and I'd find myself showering and suddenly thinking I should just kill myself - randomly, for no reason at all: not feeling particularly blue, not in pain, in the middle of summer, good weather - like I say no reason, and there it would be. But even without the anti-convulsants making this worse, it's been a tough crawl through it. And it never really lets up. I've got to the classic stage of no friends, not wanting to go out, being overwhelmed in shops, not able to get out of bed before noon - you know the protocol. The worst thing about it is it's all through choice - I haven't been pushed into this by circumstances, so I've no-one to blame but myself. And that's just what you need, more shame to heap on your head for your 'failings'!

    Whereas I had a troubled childhood (who hasn't?) there have been times without number when I've thought 'That just doesn't explain this - it's too sudden, too random': you know the times when you're not thinking anything negative, when you're trying your best and there it is - that old black dog just dogging your heels. No getting rid of it. But can I discuss this at a doctors? No way. It's just too shaming, and I feel that once you get the 'crazy' label slapped on you, that's it, no-one will ever take you seriously again.

    Anyway, now I AM depressing myself discussing this. On a more positive note, I went out today and bought myself some 1200 microgram sublingual B12 drops from Holland & Barrett, while I'm waiting for this whole dance with my doctor to be gone through. It occurred to me I could get proactive now; I wasn't waiting for blood test results any longer. I don't know if they are any good; I know many people don't believe oral medication does the job, but at least it won't hurt anything other than my finances.

    Are you giving yourself B12 injections, by the way? Are you buying your own supplies on the internet? I take it you were treated though (and still are assumably) on the NHS?

  • sublingual is a bit different from oral as the intention is for it to be absorbed in the mouth through saliva rather than being absorbed in the gut - and people do find that it works for them. However, taking it now may complicate things as it may mean your next test result looks normal but totally understand where you are coming from - sometimes you just need to get yourself into the driving seat and be in control not at the mercy of medics who so often don't seem to listen and don't understand

    I source from a company in germany for ampoules of B12. Do go and have maintenance shots just because I'd like to have the malabsorption on the record in case something does crop up in the future. Mainly though I find a nasal spray does the trick for me ... and it really was the nasal spray that really saved me.

    Reading through your post the bit about isolation is typical of B12 even without depression. I can see it in a colleague at work but she hasn't got to the point of frustration with the medics that I did yet, and she doesn't have a diagnosis. It isn't something to beat yourself up.

    For me the intrusiveness of suicidal thoughts was a growing problem - though I had learnt to cope with it using mindfulness meditation and actually figured out that it was a stress response but I had a choice about how I responded to them. I realised that what I was doing was the equivalent of hiding in the house when an unwanted visitor came to call and getting pretending not to be there in the hope they would go away, whereas what I really needed to do was open the door and politely tell them that I wasn't interested. I thought it was going to take me months to retrain my response from one of getting caught up in anxiety loop that meant my brain was sending me more 'warnings' of suicide to actually just saying to myself 'hey up, I'm a bit stressed - I need to relax' but in fact it took about a week. Yes, still get the thoughts from time to time (much less so now that the anxiety is better controlled) but I can deal with them and don't turn into the rabbit in the headlights that I was before.

  • I didn't realise that sub-lingual was absorbed through the saliva - I thought it was something to do with more absorbent skin being under the tongue! I'm ashamed of my own ignorance. I'm only now thinking of the ramifications of leaping ahead with self-medication but I'm going to persevere for at least another couple of days because I SEEM (I feel very anxious about getting over-excited here) to have had a rather remarkable result from it. I get residual mouth pain (from the TN) even with medication and it's that that we are always trying to get rid of with new drugs. The latest one I'm on, Gabapentin, has made zero impression so far. I've been on a dose of 600mg for 9 days now, with nothing to show for it but a list of increasingly serious side effects, but suddenly on day 2 of B12 I have reduced mouth pain.

    This HAS happened before, but it's a very odd coincidence, so I want to at least take a few more doses and see if this result continues. I can always stop then, if needs be, although truthfully I don't want more testing; I want to go right in for aggressive full-scale treatment. Paradoxically, it will actually give me more evidence for the doctor if I can say that B12 had an effect on my mouth pain when months of anti-convulsants have not. But, like I say, it could be a (cruel) coincidence so I'm trying not to run round the house dancing. I haven't even mentioned it to my partner yet - no need for two of us to be crushed if it doesn't pan out.

    But it would be nothing short of a miracle if it has helped already. Let's face it, this is concrete myelin sheath damage we're talking here, not just 'vague' tiredness or depression. It would take months, maybe years, to repair that, I would have thought - if it ever happened at all. So deep breath...

    And yeah, the isolation thing. Dreadful. I started mine while living on the island of Orkney. We had a large circle of friends and a very active social life and I actually moved house to an isolated part of the island just to avoid bumping into people. I turned down every social function and actually took to hiding on the upper part of the house and even hiding the car (no, I'm not kidding) just to avoid speaking to people or having to go out. My partner now has an active social life here in Edinburgh, in which I take no part whatsoever. I use the fact that I'm not a fan of poetry (he does performance) to avoid going to his gigs, but truthfully it's a LOT more to do with not wanting to have to deal with people at all. It makes you feel like a freak and the most anti-social person on the planet, but how do you even start talking to a doctor about that? It's not like your brain hurts. It's so tragic it's almost blackly funny. In fact, that's how I deal with it, by laughing with my partner about my anti-social, cultural philistine nature!

  • Think the absorption is a mixture of the two - saliva and then the membranes in the mouth.

    I've suffered from migraines for years and one medication that has really helped comes as a wafer that you let dissolve on the tongue. The migraines got a lot worse with the B12 ... and then subsided but got a bit worse with the supplementation so tried some B6 (working on theory that I'm probably using a lot of B9 and if B9 is low body will convert B6). It's helped quite a bit but still left with some sort of hormonal migraine ... but now at different time and although the nausea was bad it has diminished a bit so guess it is carry on tinkering with possibilities. Anyway, point is that delivery through mouth/tongue can be quite an effective route.

    I got to the point where I'd started avoiding social gatherings because I just found them too difficult (a degree of psychosis added in to the mix that meant it all felt like everything was screaming at me all the time) but now starting to find it a lot easier to be around people again so you may get there as well.

  • EEK! No! Not migraines. I sincerely hope not. I had six weeks of them while on Lamotrigine. Six bloody weeks. Awful. I noticed my first two doses of B12 made me feel odd, slightly high and hyper. And the first dose made me REALLY, REALLY tired, which is something coming from someone permanently zonked on antic-convulsants, and ironic considering the drops were sold as energy givers. But I read somewhere on here that they can make you feel worse at first, so I wasn't unduly worried. Second dose wasn't so bad, just felt sick with that one, and third one this morning made me feel sick again (and kind of hot too) but otherwise nope, side effect free. But I expect the clinical intramuscular injections might be more severe?

    Just spent the day doing my dossier to my doctor. In fact I was just on here to get a couple of your links when I saw your reply. I'm dizzy with it (doing the dossier - not your reply!). It's knowing what to put in and what to leave out. I was going to include Doctor Chandy till I discovered he was banned by the medical council from giving his patients B12 for fatigue. NOT good. So he didn't make it in. I stuck with the Haematological Society; their's is best, NICE and the study on rats.

    Let's hope it does the job!

  • Hope it goes well.

    Not good news about Dr Chandy ... but also not the first time he's been investigated so hoping it all gets sorted out. Really need a lot more GPs like him.

  • Gabapentin made me want to kill myself. It's one of the side effects!

  • Oh yes, Mumzie, I went full suicidal on anti-convulsants (mine's was Carbamazepine then Gabapentin, but they are all known for it). I actually consider that I went a little mad when I was on them - my journals certainly back that up. It was difficult, of course, to separate out the effects of having an incurable illness (depressing enough) against what the drugs were inducing, but I do remember very clearly that I got a lot of suicidal urges randomly. My favourite one was a strong urge to throw myself off the balcony of my flat! The fact that a lot of it was drug-induced was 'proven' by the fact that I used to get suicidal urges when I was perfectly happy. I still remember vividly standing in the shower, feeling perfectly cheerful, all things considered, and having a very profound and convincing thought of 'I should just kill myself'. It was the first time I realised that the drugs were definitely playing a real role. Perversely, I felt more confident about them after that! But I did get scared when I was on my own in the evenings - I used to worry I'd just do it one night on a whim...

  • I was diagnosed with atypical TN many years ago. I took many different anti-epilepsy drugs to control the pain with little success. Since beginning B12 therapy in August, the pain has subsided. I am hopeful it will reduce further.

  • Terriergirl, that's REALLY interesting, and a chink of light at the end of the tunnel. I'm actually afraid to allow myself to think B12 would actually cure anything, just stop the degeneration. But if B12 actually helped the TN, that would be amazing. Of course I have classic TN, not atypical, but that does give me hope. Can I ask why you began B12 therapy? Was it for the TN or were you diagnosed with some other condition that needed it?

  • A routine blood test showed a B12 deficiency earlier this year. My level was 120 (range 197-866). I suspect that I have been deficient for years though as I was originally diagnosed with MS, which I now believe to be mistaken. I think my symptoms were due to a lack of B12 all along.

    I hope that B12 provides the same relief for you too.

  • Ah, you were 'lucky' enough to get a low result! I feel absurd saying it, but I envy you. A nice low result would have spared me this fight. And I agree, just like you I too think I have had a longstanding problem - hence the TN.

    Thanks for the good wishes - the same back at you!

  • I suspect that a few years ago my levels would not have shown the deficiency. It's terrible that we have to end up feeling so ill before the problem is addressed. Do you think your Doctor would agree to a trial of B12? I do hope you manage to convince him

  • Well, I'll deliver my package of scientific facts to him and keep my fingers crossed. He's a reasonable bloke and I'm hopeful. Failing that it's going to be OTC supplements!

  • Oh, and I should say, a new bloody doctor! Because I'd never trust him again.

  • Opening address of last years PAS conference - which references study published in 2012 that concluded that the results of Serum B12 test is very inaccurate - wrong in 35% of cases ...

    Sorry but didn't manage to write down the study details but they are referenced on the sides showing in the presentation

  • This is a great little video, Gambit, thanks a million for it. Just watched half of it and already got a lot of ammo. Can't thank you enough - you're a one-man resource team!

  • Not really - came from watching another post that looked at another part of the conference and just decided to go through all of the rest of it - lots of really interesting stuff in there ... what struck me most was another presentation on the genetics because it mentioned links to fungal infections ... something that have plagued me a lot in the last 10 years and I'd sort of twigged that they had diminished in the last few months but hadn't really twigged. Doctors had mentioned diabetes as a possibility - which it never was (there is a history in my family but I didn't get that gene). There was also a load of stuff on alzheimers/dementia and B12 ... which makes me even more determined to try and get my mother onto B12 (though probably not the GP route).

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