Still suffering

I was diagnosed as b12 deficient and told my levels were very low but not the actual level. I had 6 injections and, although symptoms existed during that period, I have enjoyed two months without any. Now, in the past two weeks I have had 7 events lasting less that 10 seconds of auditory hallucinations. To describe them: my body goes into shock and feels like it is shutting down, then I hear voices jumbled up with something like static noises.

I then regain consciousness and, although there was a sort of logic within the trauma, like a dream, there was no rational sense afterwards.

The administrator referred me to the BSCH site which said that I should have alternate day injections for neurological symptoms and a new injection every two months rather than six injections spread - one every three days.

The last two incidents, Friday and today, were different inasmuch as the process began then faded before the hallucination happened.

I am having a blood test on Monday to see what my b12 level is after the injections and my top up in jettison is on November 3rd

Does anyone know - am I getting better or worse? Should I just continue with my treatment or seek help at consultant level?

I must say, apart from the hallucinations, all the other symptoms have not repeated. My energy levels are really high with all fatigue gone; no blurred vision; steadier on my feet; my brain fog and inability to remember words are much improved and getting better daily.

Any help would greatly appreciated.

6 Replies

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  • HGi Folkestone I would see your doctor about your "7 events lasting less that 10 seconds of auditory hallucinations." as they may have nothing to do with your B12 injections, but then I'm not a medically qualified person.

    Do you know why you were diagnosed with Vitamin B12 Deficiency?

    Are you vegan/vegetarian, have you had gastric surgery, what other medications are you on?

  • Thank you for your response. I was on omaprezole for around four years . I had six monthly ongoing prescriptions and never saw a doctor for check ups.. I am a vegetarian and although I eat eggs but very little dairy I do have soya products. I possibly get around 50% of a omnivores b12. I have told my doctor hence he is getting my b12 levels checked to see if the injections have had an effect. I have been taking 1000 mg b12 tablets to keep me going until my next injection

  • People vary a lot in how they metabolise B12 - sounds like you probably ought to be on 2 monthly maintenance - not just because of BCSH guidelines - but also because that seems to be when the symptoms started to creep back (as I'm assuming the hallucinations were part of what you had before rather than something completely new).

    The blood tests will only be significant if they come back showing low B12 levels - which would mean you need more frequent B12 because your kidneys are removing it from your blood. However, high levels won't mean that everything B12 is okay as it isn't the levels in your blood that count - its what is going on at the cell level and the serum B12 doesn't give you information about that - but your symptoms do.

    Have you kept a diary at all of symptoms, what improved and what came back and when.

    Sublinguals may help but they don't work for everyone.

  • Thank you for your response. The hallucinations are exactly the same as before the injections. They only seem to occur in the morning I have only had one in the evening - I don't know if that's significant? And my body always feels slightly in shock for hours after.

    I did wonder, however, that today's and Fridays events did not develop into hallucinations and that this might meant that the healing process has begun. I live in hope.

    Chris

  • I had undiagnosed problems with B12 deficiency for years and would have periods when I just couldn't move. I never had hallucinations but did have periods when I just couldn't filter out signals the way we normally do so being around people a lot of people or in a space with lots going on would be very difficult and disorientating. These are things that for me indicate that my B12 levels are starting to get low again.

    B12 is used by a lot of systems in the body and there is so much about the genetics and biochemistry that is unknown territory that it's not surprising that people respond in different ways.

    As clivealive it is always possible that it isn't related to B12 though if you think it is actually improving then it may just be it's something that needs time to sort itself out. Worth talking it through with your GP if you can.

  • Personally, Folkstone, I would be inclined not to mention the hallucinations yet if other neurological symptoms are improving. They could well ease off, being another symptom of B12 deficiency and part of the healing process.

    I only say this because our family's experience is that the surgery used this symptom to class my (vegetarian) sister under mental health, stop injections and only prescribe anti psychotics for schitzophrenia (I notice this has also been labelled as such under your post) ignoring the fact that she had a tremor, memory loss and couldn't walk. These drugs only made everything worse and it has been downhill ever since.

    See also my reply here:

    healthunlocked.com/pasoc/po...

    I hope all continues to go well for you.

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