Getting MORE nerve pain with loading shots. Why???

Hi, I've had a bit of a disappointing turn of events with my B12 loading shots that are being used to treat Trigeminal Neuralgia. At first, on just self-prescribed sublingual cyanocobalamin tincture I got a marked drop in my neuralgia pain. I was dead chuffed. When I finally got my shots they seemed to help too. They certainly didn't hinder. In fact, by just the second shot I had a day where my mouth was as close to pain-free as it has been in 9 months; not even strong anti-convulsants had managed that, and I was thrilled.

However, the day after that things started to get worse. At first it was just a drop back down to the 'normal' pain. I was disappointed, but not crushed. I hadn't expected it to heal myelin sheath brain damage in a matter of days (ok, I'd hoped, but I knew it wasn't likely). However, today, a day after my third shot, the pain has actually got even worse. Not only worse, but it's gone back to the way it was in the early days of the neuralgia, and it's NEVER done that before. My question is why? What's going on?

B12 is not a drug so it can't be causing a bad reaction with the anti-convulsants, nor can it (surely?) be overriding them in some way (I still take two different anti-convulsants to manage the condition). So what the hell IS it doing? It's too big a coincidence that the pain has gone back to the way it was in the early days of the condition, so what's going on?

I've read on these forums that B12 can sometimes make the pain worse at first, is it possible that that's what's happening? I don't want to be falsely reassured here, so please don't sugar-coat it if you think B12 is not the problem. I could genuinely swear these shots are doing me good. In lots of ways. No more waking up with black dread. No more being unable to get myself out of bed. Except with tiredness, which I'm also getting more severely - I have to say it, almost as if my body is working harder. But on other days I have more energy than I've had in a long time. I feel sharper too - and that's no mean feat when you consider I'm on powerful drugs that effectively recreate dementia. I really don't want to build up some ridiculous fantasy picture here of B12 working when it isn't, so I need to know if anyone has experienced something similar. And if so, when does it get better?

I ask that in particular because I need to know whether to push for more of these shots or not when my loading period expires. Because Trigeminal Neuralgia is not a recognised symptom of B12 deficiency there's no real treatment protocol; I'm on my own, so any experience or insight anyone can offer that might reflect what's happening would be most appreciated.

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  • When to get a B12 jab, depending on how much metabolic backlog has built up, there is a period of "detoxification" in which symptoms, how can I say this, mirror the symptoms of the deficiency. It's almost like you get worse before you get better.

    During this time, you can also become depleted of other minerals and vitamins that have been fairly stable during the backlog. Getting a B12 injection it like releasing a log jam and a whole lot of metabolic pathways that have been blocked are suddenly released. Your urine turns darker at the same time.

    Hence the sequence of loading doses to get this flood over with. You will need Folic Acid and multivitamins (especially other B-complex) vitamins to support the metabolism during this time.

    B12 does reinforce myelin sheath and the pain indicates that the brain is receiving stronger signals. Typically these signals come from damaged tissue, but in the case of B12, the tissue is also improving. It takes a while for the brain to recalibrate (turn down the volume) to the new amplitude it is receiving.

  • Hi Pvanderaa, thanks for the reassuring reply. I'm going to believe in that theory - 'get worse before you get better' - and hope for the best. I'm pretty much writing the book on this one as a TN treatment, so we'll just have to make it up as we go along. Certainly, the other advantages I've had from it have been more measurable (loss of depression and black moods, increased energy, general improved well-being) so that's a good enough reason to stick with it. I just wish I had some damn idea what to ask the doctor for by way of maintenance after the three weeks is up. I am afraid that I will lose all the progress I've made if I drop down to the bi-monthly shots but I don't know what else to ask for...

  • Its to early to make any conclusions I think. I believe its logical that waking up nerves in repair can cause extra pain, you can only tell if the pain is because of repair after a certain length of time, how long I can not say. It takes 3-4 months to have all the blood cells replaced in the body with the increased B12. Hang on in there, it could be very good news for you, so worth waiting to see if it does help you, but be patient!

    B12 is needed by all cells in the body, there definitely is an increased something going on with increased supply and its logical you should give your body time to deal with the increased supply. It takes time, not days, more weeks/ months, I believe, to know what it does, or not, do for you..

    See how you feel with the treatment offered by your GP, see if it works, ask for change if you know you are going down hill is all I can suggest..the meds you take can mean you have low serum folate, increased B12 can cause increased need for folate so in time you may need to have serum folaqte tested top see if that is OK, but again that will be more in 4 months time, and it depends on how much you may need those meds etc by that time. Taking extra folic acid without GP's advise can be bad as it can interfere with you meds, so do not self medicate with anything unless your GP agrees it can do you no harm is what I'd do.

    Kind regards,

    Marre.

  • No, I was worried about the Folate thing, Marre. I keep reading on here that getting more B12 means your Folate will get deficient. I didn't want a whole new problem but the doc hasn't mentioned it so I'm not going to mess around with more supplements at the moment. It's not going to stop the B12 working, is it, if I 'run out'? God, I never seem to stop finding things to worry about...

  • I'd not worry, just try to feel good!

    As I already mentioned increased B12 can cause increased need for folate so in time you may need to have serum folate tested to see if that is OK, but again that will be more in 4 months time, and it depends on how much you may need the meds you take etc by that time. Taking extra folic acid without GP's advise can be bad as it can interfere with you meds, so do not self medicate with anything unless your GP agrees it can do you no harm is what I'd do.

  • First do no harm. Got it. Thanks, as ever....

  • My understanding - building on what pvanderaa has said and rather symplistic is that your body has been suffering and breaking down for quite a while. It's been through a whole process of developing problems and trying to resolve those problems so I don't think we should be surprised that in the healing process you find yourself going back through all those problems.

    Please try to remember that you aren't having B12 because of the TN you are having it because you are showing all the clinical signs of B12 deficiency. How you are treated needs to take the whole of the problem into account - not focus on the TN - though I realise that that is at the fore-front of your mind because it is the most distressing thing.

    The fact that the TN showed some improvement does imply that B12 may be involved. Going backwards in terms of the pain levels is an indication that the B12 is probably working and that nerves are healing - just unfortunate that part of that is elevated levels of pain at certain points in the journey.

    Yes, there is always the possibility that the TN isn't related ... but focus on the other symptoms as much as you can as this is a trial in relation to the TN.

  • I agree, Gambit, but I'm not sure how impressed my doc will be that I feel happier, or brighter, or just generally better. I think he's expecting the cure of the century, and all within three weeks. I think this is why I am worrying so much about what I'm going to do about what comes next, after the loading shots. I shall just have to quote the Haematological Society's guidelines to him and say that you pretty much have to make it up as you go along if the neurological damage is still there. Which is true. I just wish I had the first clue in hell how much B12 my body needs to keep doing its repair work...

  • I have been taking B12 injections now for 10 weeks, 1ml every day that I would split into 2 doses am & pm.

    In the past few weeks, I have noticed my symptoms reappearing, it felt as though I was back at the very beginning of my treatment.

    So, I upped my dose, but the symptoms didn't abate, I wasn't sure what was happening to me.

    I then started to really monitor these symptoms, and noticed, that they went from one part of my body to another, sometimes, no symptoms at all.

    I feel, that this is a sign of healing, and I let my body get on with the job of repairing it self.

    My serum B12 is now 2000, and my new GP thought it best to stop taking it, of course I won't, but perhaps

    I can start to look at injecting less frequently.

    If the B12 wasn't working,the symptoms would stay around, becoming more aggressive and unpleasant.

    If you have felt relief from taking B12, then that is what you need, listen to your body.............

    Pvanderaa has explained it perfectly for you.

    Take care and don't stress, your body will heal better.

    Manukia

  • Manukia, that is a LOT of B12. Have you been injecting it yourself all this time? - I can't see the NHS doing injections with that frequency or for that long. Can I ask what symptoms you were treating with such an aggressive treatment?

  • Hi Chancery,

    No I don't feel I am treating the B12 deficiency aggressively.

    I am, when you compare it to the NHS dosages.

    I was told the dosage to take to start with, then it was up to me, to listen to my body,and inject when I felt my body needed it.

    I have stayed on 1mg daily for the past 10 weeks, I increased my dosage by 1/2 ml when I felt my symptoms were worsening ( they were not ) but I had only increased it for a few days.

    My symptoms:

    Tingling in my feet and legs, muscle twitching on my face around my mouth and on my arms,one of my eyes was blurry and ached, I had pain in my back, which was shooting towards my spine, my whole body had tremors,like shivering, but inside you.

    I felt like I was sitting on an electric pylon.

    And my DRs, ignored all my symptoms, they are a disgrace to the medical profession.

    I have since changed my Medical Practice.

    Why don't you self inject, then your body will get the B12 when it needs it.......

    Kind regards

    Manukia

    PS:

    Trust the B12 to heal you,don't give up on it.

  • Oh, that's bad, Manukia, it's like your whole body was electrified. I have that, but only in my face. In fact, my user name on the Trigeminal Neuralgia site is Woman With The Electric Teeth! How could your doctors possibly have missed all that? It sounds like you were the poster child for B12 deficiency!

    So did your new doctors teach you to inject yourself then? Or did you have loading shots first then they sent you off to do your own thing? Or are you doing this off your own back, and paying for it yourself? I know B12 is cheap, pro rata, as 'drugs' go, but it's still not THAT cheap when you are forking out for it yourself. This is one of my biggest worries, being cut off before I am well enough and not having the money to pay for my own supply.

  • manuika, I can relate to those symptoms. I have had for 5 years, body throbbing in brain stem and spine, nerve tingling everywhere, like I am plugged into a socket that the circuit is wired up wrong so I am electrically fused all day, at nigh t painful pressure ebuilds in my head to the point that it needs to explode to get relief but my b12 is ok, I even had the active b12 tested, ther ei ssuch a thing as ACTIVE B12. I am at a loss.

  • Hi Pettals,

    One question:Have you got any mercury amalgams in your mouth, look into this as a possible cause of these symptoms.

    Mercury toxicity mirror's the symptoms of B12 deficiency, pins and needles, brain fog the list goes on.

    I am well in myself, but my body is slowly being engulfed in tremors, twitching and the pins and needles.

    When I take my B12 shot all goes quiet, but these symptoms, are in the back ground, and getting worse, it does scare me.

    I have duly inquired from a very experienced person in the B12 field and he has already told me to get my amalgams out NOW, but I have hesitated sooo much.

    I have found it very difficult to find a dentist who follows all the safety procedures when doing a removal, as I don't want any more mercury into my system.

    You see, methylcobalamin is very effective at removing mercury from your amalgams.

    This removal of the amalgams, is only part of the journey, but at least I will have stopped any more mercury going into my blood stream.

    If you have no amalgams in your mouth ( lucky you ) then perhaps look into getting some

    blood test on heavy metals in your body.

    If you have had no heavy metal blood test, then, if I was you, I would do so.......

    If your B12 is under control, I would still try and increase the dose, to see if that would reduce your symptoms.

    How is your folate & Vit D, are you taking all the Vit B complex, I also take Vit E selenium and zinc and always always, I take my omega 3 fish oil capsules and the first one I swallow is my Vitamin C, so important a vitamin, it helps remove toxins from your body.

    I now, know why, and where my symptoms are coming from, initially I liked to think, the symptoms was my body healing, from my B12 deficiency.

    Keep stretching further, to find the reasons for your symptoms.

    Keep in touch.

    Manukia

    xxxx

  • hi that ws so kind of you to print all that. I am a dead person I am sooooooooooooo fullof pain everywhere. I have taken so many supps I cant put another in my mouth yet.. the lasttime I had any tests done was last year I think. b12 was enough, over the top they said and feritin I think was ok, I will have toASK FOR TESTS AS I AM SO STIFF AND IN PAIN, I HAVE A MOUTH FUL OF TH E sorry caps on-- I have amouth ful of them but I cannot afford to have them out-I have no way of paying for the removal. not really sure what to do next.

  • Hi pettals,

    The only fee is for the composite filling, they don't usually charge for removal.

    It is finding a good dentist who will not put your health at risk.

    All Dentist charge a varying price for composites.

    You can take it slowly, one a month even, but at least you are reducing your mercury overload ( that is, if this is your problem ) every time one is removed.

    I think perhaps you ought to get a blood test to check your body burden of mercury,this test will only measure what is in your blood, not what is in the cells.

    But it will give you an indication, of what is going on, mercury wise, in your body.

    I had no success with trying to get a blood test from my GP for mercury testing

    but you may have more luck.

    Goggle mercury toxicity, and see if you see your symptoms there, then show that connection to you GP.

    You can't dismiss this connection you have with amalgams, you must check this out...

    In the mean time, take all your supplements, including selenium, zinc omega 3 Vit E Vit C.

    Do you self medicate your B12 if you do, then I would up the dose, and see how the symptoms are.

    If not, and you get your shots from your GP, then again, I would ask for an increase in the frequency, to see if that is where the problem is, not enough B12 in your body.

    I know you said you have enough B12, I have over 2000 in my blood,but I still have these symptoms that mimic B12 deficiency, and yet my levels appear that I have enough B12 in my system.

    But my symptoms are getting worse and scary.

    Go back to your GP and explain your symptoms.

    These symptoms are there for a reason, something isn't right....

    PS:

    You are not a dead person Pettals, you have symptoms that are making your life a misery,and you have to find out what is causing these dreadful symptoms.

    Take care and keep searching for an answer, these symptoms of yours won't go away on there own.

    Keep in touch.

    Manukia

    xxx

  • hello M, my doc wont give extra b12 as I have plenty in my body- I reckon I have spent their budget on various specialists they send me to on my asking. then the clinic letter comes in== we reviewed this lady, she has seen many specialists----- say no more .... it looks so bad and I cringe if ihave to go in to the doctors, I have such bad experiences with 2 surgeries and a neuro at my local hosp who didnt tunderstand the trembling , nerve fluttering tingling and head pressure, what the f***k was she doing being a neuro-- helloooooo your profession you quack, is supposed to be the nervous system! so then the registrar at the spinal unit told me not to go back as he had 'looked into the opinion of the neuro! I had been at the spinal unit for 10 bloody years with regular checkups as my multi level disc degeneration, degenerative facet joint disease of the spine, lumber fracture, lumber spondylolisthesis ( slipped vertebrae and lumber nerve compression spine needed an op but my surgeon delayed it due to my poor health and said he would keep an eye on me and then I see the moron orthopaedic registrar after the moron neuro! what a show down! I hate going anywhere now and to write direct to the hosp consultants rather than go into gp. I feel intimidated now as my notes are awful.

  • Hi Pettals,

    I agree wholeheartedly with your sentiments, sometimes you meet DRs, and you are left wondering why they took up this profession.

    Don't allow yourself to be intimidated, it takes your strength away, and you need all your resources to fight this.

    I still feel, that perhaps you need more B12 your symptoms reflect a deficiency.

    If I was in your shoes, the first step I would take is to self inject, and to see how that goes.

    The level of B12 in your blood is high, but that does not reflect what is in your cells, just what is floating around your blood doing nothing.

    I know it sounds a bit frightening to inject oneself, but needs must.

    If doors are closed to you, then open doors, you know you can open to help yourself.

    You cannot keep going like you are with these symptoms, you must step forward and take action by yourself ( with support from the forum).

    This forum is an absolute life saver, if it hadn't been for this very forum, I would not have known about B12 deficiency.

    I would hate to think, where I would be now, if it wasn't for this forum.

    You have so many individuals here, that will support you, in self injecting.

    I would delay getting a mercury test, and to focus on your B12 possibly being deficient.

    These symptoms may be all due to a lack of B12, and that, is so easily fixed.

    Keep in touch

    Manukia

    xxx

  • heck I admire you- as for self injecting I wouldn thavethe first clue of where r to stick the needle just in cas ei damaged a vein or infected myself.. what about bilingual b12? is that no good? these horribl esymptons die down every so often and them emerge again an di am wonderingif I have got some sort of infection wandering about my body..

  • Hi Pettals,

    There are many of us on this forum who self inject, we have no alternative.

    I often put the needle into a vein, leaves a bruise and stings, but I don't do it often.

    When you said earlier, that you could relate to my symptoms, well, I had those symptoms, when I was at my worst, begging my GP for B12, so you must be B12 deficient..............

    Yes, you could use sublinguals, I used the spray under the tongue, very effective, but eventually, my B12 deficiency couldn't cope, I needed the injections, to keep things under control.

    It is also, far less expensive to inject, than to use sublinguals.

    You could try the sublinguals for a few weeks, and see if the symptoms improve.

    You will have your answer then.

    If you are having nerve fluttering, pins and needles, tremors

    these do sound B12 deficiency.

    If these symptoms of yours, are signs of B12 deficiency, then Pettals, do something soon, other wise, you are hurting your body.

    I hope, you keep searching to find the cause, of your unpleasant symptoms.

    It has been nice chatting to you, look after yourself,

    no one, can do it better than you.

    Kind regards

    Manukia

    xxxx

  • yes thanks M, I WILL GET SOME spray first, I do have symptoms of pots too and possibly excess substance P, which also causes trembling etc as it is produced in brain brainstem and spine, I am having acupuncture at the moment so willgeta b complex and b12 too and thanks M.

  • Eat lots of greens for the folate.

    Keep in touch with the forum, and take good care of yourself.

    Manukia

    xxx

  • yes eat kale a lot is is super food, eat veg everyday an di will order some spray ,thanks M you take care an I will keep I n touch..xx

  • They didn't miss my symptoms, I had my hubby with me as well, I was at this point unsteady on my feet as well as being very dizzy, the symptoms frightened me.

    My husband was pleading my case with the DR, to help me, but she chose to go by the ( Holo TC ) test which was in the grey area, even though I was suffering badly from B12 deficiency symptoms.

    Her words were ( my hands are tied ) I can do nothing to help you.......................

    If I had received the loading shots from the DRs and accepted there 1mg every 3 months, I don,t think that

    I would be as well today, as I am, so a blessing in disguise for me.

    My loading doses were 1mg every day for 1 week, then every alternate day.

    The day I was to miss a shot, by the end of that day my symptoms were back, I had to inject.

    My first few days of B12 had the symptoms receding to the background,dampened down, just waiting to

    start up again.I found splitting the dose very beneficial, as I had both ends of the day covered.

    I taught myself to inject from a video on YouTube, it took me a few hours of viewing, to actually feel confident enough, to insert the needle, and when I did, it was painless, but I do have many bruises on my thigh,s, from my mistakes!!

    I purchase all I need from Germany, excellent service and very reliable.

    Keep taking what you can get from the NHS, but start also, to acquire your own stock of B12, you may need more than they give you, for your body to repair itself.

    I would hate to have that pain in my teeth and face, you have my sympathy,it must be horrible for you.

    If you had a choice where not to have pain, the face would be my first choice.

    Other places on our body, we can attempt to alleviate the pain in some way, but not the face.

    I am not recorded by my DRs as B12 deficient, am I missing out on anything, yes, { 4 ampules per year }

    All the very best Chancery, take good care of yourself.

    Manukia

    xxx

  • You have my endless admiration, Manukia, I wouldn't have the courage to inject from a Youtube video. I'd be absolutely certain I was going to give myself an embolism. And what a fibber your doctor is (or was!, if she's the one you dumped). They absolutely can give you B12, as long as there are symptoms, and you had symptoms. Too many docs treat the test results and not the patient. It's very sloppy, irresponsible medicine.

    No, if I think I need to source my own B12 I'm going to be upfront and ask the doc to teach me how to inject myself. I'd feel MUCH more confident if someone supervised my first couple of injections!

    I also get a version of the return of symptoms by late in the day. What I get is a craving; it's the best word to describe it. It's almost like an addictive urge, something I'd never say to my doc in case he believes all the old wives' tales. It feels like I really, really NEED the injection and my body is craving it. I don't have any symptoms, per se, I just really want it, and look forward to getting it, even although I have to get up at bloody silly hours and it makes me feel poorly all day. I think that in itself indicates it's doing something right, even if we can't see it (yet!)

  • I was desperate to have the B12, I had no other option.

    There are people on this forum, who self medicate B12, and have learnt to do so on the YouTube,

    you ought to have a look.

    I will ask my New Surgery if they would show me where to inject, as it really is a hit or miss with me, and I do hit veins sometimes.

    I think you are wise to ask your GP to show you, you will be more confident in your ability then.

    You know your body better than anyone, so be guided by what you feel, I suppose you could say, it is your intuition, at work.

    Keep a daily journal of how much B12 you have taken, and your symptoms.

    Be patient, don't stress your body, it is doing a delicate job of repairing the myelin sheath, so take good care of yourself.

    Manukia

    xxxx

  • Yep, I think you're right, we pretty much only have my hearsay to rely on, which pretty much means my intuition. There is definitely not much documented evidence for the use of B12 in TN. The only stuff that's there is in research studies, and I've certainly never encountered any that have A) done them for long enough or B) used a big enough research group. I am pretty much writing the book on this one, so I shall just have to soldier blindly on!

  • Sometimes,we get aches and pains and can't find a reason why, B12 deficiency is very subtle, in its advance

    that little annoyances, aches and pains, we just accept, and get on with life.

    These now have to heal.

    I was unaware,of many things that was happening to my body, due to B12 deficiency, until I started to get the tingling etc etc .

    My hand was tingly but only lightly, what was more noticeable was the numbness.

    The other day,I had sharp shooting pains into my hand, it came out of know where, then vanished

    within a couple of hours,the numbness in my hand,is much better, hardly noticeable.

    This is the repairing work being done,I accept it, things are not getting worse, and I don't need to increase my dose, the B12 is doing its job and I let be.

    You are a trail blazer in this Chancery, don't forget to keep a journal, and enjoy your life, it all helps in the healing process.

    Keep in touch with the forum.

    Kind regards

    Manukia

    xxxx

  • Hah! A trailblazer - I like that. It certainly sounds a lot better than scared shitless and blundering blindly on in a state of doubt and fear. But hey, I'll take anything positive that's going, thanks!

  • That's the only way to look at these health problems that come barging, unwelcome, into our lives,

    there is no other way.

    Be patient with B12, and listen to your body.

    It has been nice talking to you.

    Take care of yourself.

    And, keep in touch.

    Manukia

    xxxxx

  • Right back at ya', and thanks for all your help!

  • Don't you need folate to help along side B12 though?

  • Hi Nichola, yes, you do, but my folate was okay at starting, as per the blood tests, and I've been advised on here not to mess with folate supplementation unless my doc advises it, so that's what I'm doing!

  • What was your folate level?

  • Hi Engels, I had to dig that out! But my serum folate was 7.8

  • What was the lab's "normal" range? It's usually something like 3-20. If so, then in my opinion your folate was too low to start with and will probably now be lower due to the extra demand on it from the B12 injections.

  • Taking extra folic acid can interfere with the medication Chancery is taking (anti-convulsants) , so I think it safer if its only added with GPs agreement..

  • Hi Marre, can I ask you where you saw/heard that folate can interfere with anti-convulsants? It's only just occurred to me I should have asked you that at the outset, but I thought my folate was at a high level. It was only Engels alerting me to the possibility that made me realise it's not THAT high, and if B12 is draining it...

    I've checked my Tegretol leaflet and it does cite B12 as a potentially 'dangerous' interaction. Ironic, because I didn't know that, but as the doc prescribed it I assume I'm safe, which I probably shouldn't because it's been my experience that a) they don't know shit and b) they don't check. I suspect it's probably because it makes Tegretol work more rather than less. I'm assuming that on the strength of an article you alerted me to where they were testing B12 on rats along with carbamazepine (Tegretol), and they found B12 injections made the drug work better. But I will ask a doc on Monday, when I get my next injection. Better safe than sorry.

    But there's no mention of folate on the Tegretol leaflet or the Gabapentin leaflet. The Gabapentin doesn't mention B12 at all so that maybe only interacts with carbamazepine. Sorry, I should have asked you this sooner because some of the drug interactions, like antihistamines for example, are so minor they really don't count, it's just the drug companies "covering their asses" to quote my doctor!

  • All I know is that antiepileptic drugs can help deplete a body of folate, but adding folic acid can interfere with the working of that drug.

    I've looked some of your drugs up, not nice reading see:

    medicines.org.uk/emc/medici...

    medicines.org.uk/emc/medici...

    Here some discussion about the drugs and B12;/ folate:

    pernicious-anaemia-society....

    pernicious-anaemia-society....

    Lots of post about people on Gabapentin on the old PAS Forum, just put it into the search option.

    But what ever you do first see how the B12 helps, then if that is good slowly reduce with support from GP is what I'd do, nothing self medicating at this time because you can then not tell any more what helps you and what it does or not do to your body etc,

    I hope this all makes sense,

    Kind regards,

    Marre.

  • Hi Marre, thanks for the info. Very interesting to see that people have been prescribed anti-convulsants for headaches! Good grief, is all I can say. I can understand giving it for bona fide migraines, but anything less than WWIII starting in your brain, I'd say no. Bad idea.

    I was aware that they damaged B12 and folate levels, along with nuking your white blood cell count. Mine's drops with every blood test I take, but I have a hell of a job convincing my doc it's important. If I hadn't asked him to have it checked he'd never have bothered. He's never had liver function tests taken for me either and he's supposed to have them done regularly. I know I should ask, but I just can't face it. More bloody tests and needles. And my doc is good too, decent - what would it be like with a bad one?

    Unfortunately I can't see me being able to live without the drugs. I've never been able to reach the nirvana of 'a pain free state' that you are supposed to get to before they wean you off the drugs to the lowest maintenance level, so it's not really an option for me. However, I am going to discuss getting my folate supplemented with him tomorrow. I don't doubt he'll never have heard of it, and off we'll go again.

    I've written you a long reply on the other forum about the problem with trying to decide how I'm feeling, so I won't repeat it here! But I am worried that I'm having a problem with folate levels. About halfway through the second week of shot-loading I noticed I wasn't getting the 'highs' from the injections any more. More worryingly, I was slipping back into depression and feeling more exhausted and now I don't feel like I'm getting the injections at all. The 'craving' for them has gone; I just dread them, so I'm wondering what's changed.

    As soon as folate was mentioned I thought, 'Aha! I wonder if I'm short on folate, because of the demands of the big B12 loads coming into my system, and the B12 can't work as well now?' I know this is going to sound bonkers, but I was also craving breakfast cereal, particularly bran flakes and anything malt flavoured. I know they supplement breakfast cereals with folic acid, and there might be more in bran and malt cereals? Or iron perhaps? I can't look the damn things up because I keep my cereals in tubs and throw the boxes away!

    Anyway, I apologise for that eccentric line of thought, but I always find food cravings suspicious. I'll discuss folate with my GP tomorrow and make sure it's ok to take. But I really do want to shuck off this Gabapentin. I'm going to discuss doing it really, really slowly and we'll see what he says.

  • Chancery,

    There are lots of food that contain folic acid.

    I started taking folic acid supplements when I started with B12.

    I stopped the supplements after a month, when my DR said, to increase it now, by eating food rich in folate.

    My folate was 14.5ug/L 4.6- 18.7

    My level after a month soared to over 20ug/L.

    I ate spinach daily lots of it, and also lentils have lots of folate

    in them as well, brussel sprouts, peas broccoli,orange juice,

    avocado,dark green leafy vegetables.

    Your level needs to be near the top of the range.

    Keep well.

    Manukia

  • Hi Manukia, the doc okayed me taking folic acid tabs today, but he was of the opinion I didn't need to; he wasn't interested in the idea that B12 shots deplete your folate.

    I got a general multivitamin that contains 200ug of folic acid so I'm taking that twice a day. I'm hopeful that that will be good enough. Also going to step up the veggies, although I've always eaten plenty. I'm aiming to have one dark green veg a day!

    The problem for me is, I think, that my anti-convulsants deplete folate stores, hence my not very high 7.8 test results. Considering that I eat a lot of folate-rich foods it's not a wonderfully high result and I expect the anti-convulsants are to blame. There's no fixing that unfortunately.

  • Taking 200ug of folic acid, and eating foods rich in folate, hopefully, this will keep you topped up.

    See if you can worm, another folate test out of your GP in 3 months time.

    Have you had your Vit D and Ferritin tested ?

    Take care of yourself Chancery

    Kind regards

    Manukia

  • No, I've had nothing tested except general blood work, F1 antibodies and serum B12 - that's my lot. Yesterday I ran the idea of having my Parietal cell antibodies tested. That did NOT go down well, so I want to do these things slowly. One at a time. Don't want to overwhelm the poor creature. He considers all this stuff "going to the dark side" - I quote.

  • Hi Engels, digging it out again, and I see the lab's range is 2.8 - 20, so why do you feel that the 7.8 is low? Because it's under the halfway point?

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