B12 deficiency

[Alfabeta]

Hi All

I was diagnosed around three years ago with b12 deficiency and receive injections every 12 weeks.

Most of the symptoms ceased pretty quickly but I did have one main symptom which remained.

My main recurring symptom was all of a sudden to go into a semi conscious state when tinnitus would occur (the sound of static interference); this would last for up to 10 seconds followed by a euphoric dream like feeling which seemed to make sense but as it abated after about 10 seconds made no sense at all. If I was reading a book during this time or someone was speaking to me it would make no sense.

After an attack I was confused I talked gibberish and my balance would affected.

In a 12 week period, these symptoms would occur soon after the injection - this cycle I received the injection on Monday 5 February and the symptoms occurred on the Thursday.

The symptoms then cease and tend to return about weeks 5 - 7 of the injection cycle then cease.

I get one day when I have 5-6 events then the events reduce and after five days cease all together and my speech, thinking etc cease to be a problem

The symptoms have changed, however. The tinnitus has ceased and the aural dream like sequence does not always occur. I usually just go into a mild semi conscious state and then it abates lasting about 5-6 seconds.

I have, however, started to develop pressure headaches but and someone on the site suggested this might be a reaction to one of the ingredients in the tablets - the cyanide I think was suggested.

I am aware from my other posts and from reading posts regularly on here that my symptoms do not appear to be common - in fact every doctor I have spoken to has said that they are not symptoms of b12 deficiency- which is not true according to the b12 deficiency site.

Am I getting better or still experiencing the development of the problem?

Please don’t waste your time telling me to seek medical advice - I have tried and failed. When I spoke to a consultant I was being taken down the depression mental illness route neither of which relate to me. I am not depressed or mentally ill.

[Gambit62 Administrator]

what tablets are you taking? Even if you are taking cyanocobalamin it is very very unlikely to be cyanide that is the problem - could be a filler or a preservative but not cyanide.

what you describe sounds a bit like silent migraine/migraine

how do the pressure pains relate to the fits of unconsciousness?

[Alfabeta in reply to Gambit62]

They are occurring at the same time or between episodes but the headaches are a newish symptom.

[Gambit62 Administrator in reply to Alfabeta]

it may be that you are experiencing migraine like symptoms and the character of the migraines is changing - which it can do. The timing is strange. Is there something else - diet or environment changes that fits with the pattern you describe?

[Alfabeta in reply to Gambit62]

I don’t think so. I am a vegetarian and my diet has been pretty consistent over the years. I am not sure that I have an absorption problem. I was on omaprezole with six monthly resupply for many years which, coupled with the low b12 in my diet, is as likely a cause of the absorption problems as the lack of stomach acid which, I understand is the main cause of b12 deficiency for the over 60’s - I am 69.

I am not sure if you were referring to the occurrence timing of my symptoms.

To repeat, I tend to get my symptoms soon after the injections and after 6-8 weeks; I get a day when up to seven events as previously described occur which reduce in frequency over a five day period then cease.

For example I had two events during sleep early Thursday morning them five events during the day; three events on Friday and only one on Saturday - so far none today.

[Gambit62 Administrator in reply to Alfabeta]

symptoms of low stomach acidity are pretty much the same as high stomach acidity - and include acid reflux - so omeprazole may have been masking a symptom and making the underling cause worse rather than being a specific cause.

I'm clear on when the symptoms occur - just saying that it would be easier to understand if it was a regular pattern - say every 6 weeks - though it sounds a bit off from that.

There is a forum on HU run by the National Migraine Centre - a number of PASoc forum members are also members of the forum. You can self refer to the NMC I believe - might be worth looking into.

Some women do experience onset of post-menopausal migraines ... which isn't to say that B12 might not be involved somewhere.

healthunlocked.com/migraine...

[Alfabeta in reply to Gambit62]

Thank you Gambit you’re a saint.

Enjoy Sunday