Is this the end of the road?

I am so grateful to have the loveliest GP. For the last year & more, she has provided me with Hydroxocobalamin ampules for self-injection (And had arranged to 'train' my husband in the administration of the B12 but it's much easier/handier for me to use 1ml syringes).

However, I was with her recently & she seems to think that as it's 15 months on and because the improvement I had experienced at the beginning of the B12 injections came to a halt a year & more ago, she doesn't expect to see any further improvement.

I am absolutely gutted....the injections are all l have left. 7 years of chronic migraine headaches/occipital neuralgia....

Should I keep going with the injections or call it a day?

27 Replies

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  • Can I just check that you've been receiving injections for 15 months and after initial improvements you've seen no progress in more than 12 months?

    However, have you maintained the initial improvement? It's improved the migraines and neuralgia even if they haven't resolved?

  • Yes that's about the height of it... definitely an improvement but nowhere near a resolve thank you 😊

  • WTF?

    So you were unwell. The doc gave you some medicine and you felt better. Now she wants to stop giving you the stuff that makes you feel better?

    Ask her if she stops her diabetic patients from having insulin after they start feeling OK?

  • Lol fbirder! Sorry maybe I didn't explain this very well. I began loading doses August 2016 & towards the middle/end of September I noticed a significant improvement in the headaches/pain. However it was as if the reprieve was temporary as the migraines/neuralgia pain sneaked back with a vengeance Jan/Feb 2017.

    There has definitely been an overall improvement. I just wonder if this is as good as it's going to get.... with my daily headache diary averaging 6/10 (10 being off the scale pain. 😩

  • How often were you injecting after the loading period. It sounds as though you might not be on enough on a regular basis and your levels have dropped. I have to jab about once a week or I start to go downhill.

  • Thank you for your reply 😊

    I've been injecting every other day since the loading doses in August 2016.

  • Gosh. I would be inclined to agree with GP to a certain extent. You are having loads of it. It sounds like you have a really good doctor who has allowed you to inject every other day for so long and I think she maybe right in that something else might be going on. I would go with it and see how you get on with out for a while. See if your symptoms get worse I suspect she will allow you back on if they do. Have you tried epsom salt baths there maybe a lack of magnesium.

    How is your thyroid? as this can cause neurological symptoms as well. Have you any thyroid symptoms such as weight gain, coldness, tiredness, constipation.poor memory People with low thyroid issues often have low B12 issues as well.

  • Thank you for your response :)

  • I would definitely self-inject .

  • Thank you wedgewood 😊

  • Would any of our experts recommend trying Methylcobalamin? The Hydroxy didn't suit my brother and I have read of these gene problems with some folk. Have you been supplementing with Methyfolate?

    Sorry for your pain.

  • Thank you Marymary :)

  • Hi Monimoni04

    It is important that your Folate level is monitored as this is essential to process the B12.

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

    Symptoms of a folate deficiency can include:

    symptoms related to anaemia

    reduced sense of taste

    diarrhoea

    numbness and tingling in the feet and hands

    muscle weakness

    depression

    Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

    I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

  • Have you had any recent bloods done for folate, ferritin, potassium, magnesium and vit d ?

    Having frequent injections as you have could mean you have run out of stores of any of the above.

  • Thank you :)

  • Does having frequent injections mean you get low on the above ?.....how?

  • Take a look at deniseinmilden’s reply lower in this post

  • It seems a bit all or nothing. Why not try weekly, two weekly, monthly?

    It may be time to stop alternate days and see what happens, if you have a big increase in symptoms, log that and take that back to her.

    My sense with migraine/occipital neuralgia (which I have too) is that there is probably longstanding damage which may be too much to repair. But that doesn't necessarily mean you should stop B12 entirely. The other issue is that migraine is very adaptable and it's common for something to work well for a period of time and then it just doesn't work anymore.

    If the B12 is improving other symptoms, or related symptoms, again, it's worth keeping it going I would say. For me it improves everything and makes it easier to deal with the migraine when I get it.

  • Thank you :)

  • Hi Monimon, I am sorry you have made little progress but I think stopping the injections may take you into a worse place and some of your symptoms which have made some improvement could reappear. I was diagnosed in June 2016 and after loading injections have been on 3 per week and then 2 per week since September 2016. I have seen some improvements but the numbness, tingling, burning and ice cold, cotton wool stuffed feet and toes and tight banding have remained much the same after some initial improvement and recently have become worse but If I did not have my injections I feel I would go down rapidly and that now the two a week are no longer enough. The consultant neurologist I saw last September said it can take several years for the nerves to heal, he was confident nerves do heal in time. I try and keep this in my mind when I am feeling negative. Cutting your injections back a little for a time and monitoring your symptoms may give you an indication as to where you are. I know how frightening this is but don't give up. I read these posts every day and there are lots of success stories. So if you have to SI then better this route than stopping altogether. I wish you well.

  • Thank you for this - I really appreciate your response :)

  • Hi!

    There are a few factors to consider.

    The body uses a number of different vitamins and minerals together to function. Initially when you get more B12 you may have plenty of everything that is needed for the cells to work again and they go into overdrive and you feel much better. However this can only last so long before the plentiful resources are used up and instead of the B12 being the limiting factor, something else is and stops further improvement. It is therefore important to take extra vitamin and mineral supplements to ensure that your body has all it requires to continue the repair. Most things are needed in small quantities and a good multivitamin and mineral supplement can provide these but it is common for additional folate, potassium and magnesium, maybe iron, to be needed too. You can use Google to find out what foods you like that are rich in these and take folic acid tablets.

    You might actually need more B12 than 1mg every other day to effect a repair of the damage caused by the deficiency. I need 1.5mg daily and there are some people who need 2mg every day. The reason for this is unclear but may be due to problems with cellular uptake.

    There may be another problem with your body which is limiting your improvement. If the B12 deficiency is due to an auto-immune problem you may well have others. More than one deficiency is possible too.

    Much less common is needing different types of B12 and folate - cyanocobalamin and methylcobalamin suit a few people better than hydroxocobalamin (particularly in cases of headaches) and methylfolate and folinic acid work for others where folic acid doesn't.

    Your options are:

    * to try reducing the B12 and see if you get any worse. If you do it suggests that it is required and can be confirmed by an improvement when you increase it again.

    * to add in the additional minerals and vitamins that are required to make the B12 work fully again

    * to do the above AND increase the amount of B12

    * investigate other possible problems and solutions (e.g. I get migraines for 3 weeks out 4 if I don't take progesterone tablets).

    For more information, including sources of supplies, you could look up my profile by double clicking on my name and scroll down to see my post "My Experiences".

    Good luck!

  • Hi there Denise :) - Thank you so much for this. I had been taking folic acid, magnesium, iron, Vit D and Vit K but I decided to stop all this 4/5 months ago 'just in case' this was too much for my system - no change either way.. It is really interesting what you say re: progesterone, the migraines are much worse a week or so, pre-menstrual.

    I have cyanocobalamin so it might be worth trying this instead for a while, taking some progesterone and possibly back to the Vitamins :)

    Thank you again - this has been really helpful.

  • Sometimes a calcium and magnesium supplement will help with migraine. As you have been low in B12 it is likely that you are low in these too.

  • Hi Monimoni04. In short, I'd keep going with the every other day injections.

    As potter5 says, neurological repair can take a long time (as per neurology Consultant) and in the scheme of things, fifteen months is not long (although it probably feels like it).

    One problem with the treatment of B12 deficiency is the 'one size fits all' model of prescribing...and you'll see in the forum that the frequency of injections people need to get and keep well varies widely (some people need to inject every day, on a permenant basis... very few people manage on eight weekly or three monthly (the two maintenance regimes following loading doses and the neurological / non-neurological regime, respectively).

    Several months ago there was a delighted post from a forum member who had had initial improvement (like you), then seemed to 'plateau out' for many months. After injection every other day for well over a year, she then reported that the neurological symtpoms that has been pretty consistent...were suddenly beginning to resolve.

    There's obviously no way of knowing whether this will happen to you...but while there is still a possibility, then why stop. B12 is safe, non-toxic, an effective treatment...and extremely cheap (so no gr3st cost implications for the NHS).

    By the sounds of it, you have had some quite severe neurological symptoms, and these will be the ones that take the longest to repair, especially,if you've had them for some time.

    It sounds like you GP has been very supportive, so far...and perhaps she is just not aware of just how long recovery can take, especially from neurological symptoms.

    Here's some links to information about B12 deficiency, neurological symptoms and repair:

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms).

    And here's a paper published by an American Consultant Haematologist that should re-assure your GP - extract from the last page of the paper:

    It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice.

    bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

    If you share these with your GP she should (hopefully) be happy to continue to prescribe your every other day injections.

    You could also direct her to the Pernicious Anameia Society website which details some of the problems with the 'one size fits all' approach to treatment (there's also section for medical practitioner's).

    pernicious-anaemia-society.org

    If all else fails you can always resort to purchasing B12 and continue injecting as often as appropriate for,your own needs - so no need to despair 😉.

    We can advise about reliable sources for B12 if this is a route you choose (or are forced) to take.

    Good luck and post again if you need more help 👍

  • Ahh Foggyme!!! This is the best news and thank you a million times over for the time you have given and the effort you have gone to. I am extremely grateful.

    (My G.P. has thankfully kept me on a repeat prescription - I had referred her to this forum, along with the PA website a year and more ago but when I was with her the other day she definitely seemed to think if the B12 was going to help me get better there would have been a much more significant improvement).

    Thank you again :)

  • No problem Monimoni04. Really pleased that your GP has kept you on a repeat prescription - phew 😀.

    Fingers crossed for you -sounds as if you’ve had a truly dreadful time.

    Take care 👍

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