I was diagnosed b12 deficient around four years ago. Most of my symptoms ceased very quickly once my doctor put me on the 12 week injection cycle but one symptom has continued.
Absence seizures followed by auditory hallucinations!
My doctor refuses to accept that these events are b12 related and whenever I have sought specialist help the conversation has gone down the psychosis route - I must be suffering from stress or mental illness.
The article above explains in great detail how doctors often cause the b12 deficiency by proscribing drugs which, over time, cause it then diagnose all manner of diseases which they attribute to other causes.
Altzeimers and dementia generally are often diagnosed as a product of ageing yet b12 deficiency is rife in post 60 year olds and, as the article explains (and many others) is caused by doctor proscribed medication - ppl’s such as omaprezole which I was prescribed on six monthly recurring prescriptions and took for over 6 years even though I am a vegetarian with fairly low levels of b12 foods in my diet.
I hope you can access the article and that you find it informative and helpful (sorry about all the adverts!).
I would be grateful for your comments as I suffer all alone with my illness as every medical practitioner I speak to denies that my symptoms are b12 related which makes them medical ignoramuses (they can’t know everything but they are at root supposed to be scientists with inquiring minds) and as they have wanted to take me down the mental illness route I have elected to no longer tell them about my symptoms.
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Alfabeta
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You need to get a referral to a neurologist. Your absence seizures are a form of epilepsy, not stress or mental illness. There may be a physical cause that could be fixed, or drugs could help. But it really needs a specialist to check you out.
Thank you for response - did you read the article I was referring to?
B12 deficiency can cause auditory hallucinations- it seems to be well known by people on the b12 site and a range of medical experts- mostly American it appears - and it is well documented!
I looked up the nhs site you put in your email and read it thoroughly - none of the examples cover my symptoms. I call my attacks ‘absence seizures ‘ for want of a more accurate medical term.
No, I didn’t read it. I did what I always do and scrolled to the bottom looking for references to proper scientific papers. I found none. But while down there I spotted something about MTHFR mutations being a common cause of B12 deficiency. That, I’m afraid is nonsense. So I didn’t bother reading the rest.
I’ve found a couple of real scientific papers that link low B12 with visual hallucinations and other signs of psychosis.
Sorry, when you said you had ‘absence seizures’ I thouht that you meant you had absence seizures - what used to be called petit mal epilepsy.
Thanks for your response - I should stop calling them that!
I have read a number of articles which I will upload and, if you have time in the next week, you might give your much more experienced view on their efficacy.
Fbirder, I don't know if you are aware, or care, or if it is intentional or unintentional. But on the off chance that you are not aware how your replies can sometimes come across it might be helpful for you to know that they often come across as dismissive, disdainful and tinged with sarcasm. You obviously have some degree of knowledge to impart (your ability to diagnose epilepsy on the basis of a forum post and in the absence of an EEG is impressive in itself). Many patients give up on even bothering to seek help from doctors as a response to having their concerns dismissed in such a way. This is a support forum. And it is often the place where people who have not been able to find support elsewhere come to be supported. And sometimes your responses are anything but. There are kinder more supportive ways to phrase things. This forum is a lifeline for many so it would be a shame for anyone to be put off asking for help based on the response they get from other forum members. How you say things is as important as what you say.
I could say..."sorry, didn’t read it. I did what I always do and scrolled to the bottom looking for a proper scientific basis for the diagnosis. I found none. So I didn’t bother reading the rest."
But that would be unhelpful. Maybe it's best to leave the diagnosis to the Neurologist.
Alfabeta, fbirder is right in that it might be pertinent to discuss these absences with your GP with a view to getting a referral to a neurologist. It may or may not be epilepsy.
As an epileptic myself since the age of 13 (tonic clonic, absence and myoclonic seizures) I can tell you that the fatigue associated with b12 deficiency is a trigger for my epilepsy symptoms. But that is with epilepsy as a pre-existing condition. It might give you peace of mind to get it looked into and hopefully ruled out. But best to get checked out I'd say.
If somebody tells me that they have a fractured tibia then I don’t fell I need to tell them they need to see an osteologist before I say they have a broken leg.
Thank you for your response- I think f birder was trying to be helpful - one puts ones case out there and people respond- I know enough about my condition to disregard unhelpful advice.
I have sought the advice of a neurologist through the Benenden health service albeit over the phone. She took me down the stress and possible mental illness route - she stated quite forcefully that auditory hallucinations were not a symptom of b12 deficiency which was the same as my doctor nurses and intern at my gp practice told me.
However, on the b12 site, it states quite clearly that it is and I have read numerous academic papers admittedly all American that state that it is a symptom.
I think in the UK, b12 deficiency is immediately made synonymous with PA - at least that is what I have found even though the NHS site distinguishes between b12 and Folic deficiency and PA seeing them as distinct medical conditions although I assume that the former two can lead to the latter.
I think in the UK medical professionals are generally dismissive of the impact of nutrient deficiencies. Surely it can't be too much of a stretch to believe that something that affects the nerves, can affect the nerves in any part of the body? Including auditory signals to the brain.
Have you considered going down the SI route to see if that improves your symptoms? I'm currently on 12 weekly injections but will likely try the SI route myself very soon.
"tinnitus has reduced dramatically as have my auditory hallucinations but that I am still getting absence seizures 6-8 weeks after my 12 weekly injection".
Might suggest more frequent injections could help or be worth a try? Maybe topping up your GP jabs with an SI inbetween?
Thank you so much for your support and advice. I haven’t tried SI yet although the b12 site exists with the aim of providing b12 injections. I’m a bit wary of my body building up an immunity to the b12 serum - the more you give the more you need!
I think I am getting better although it might just be that my symptoms are changing. Since my last injection on the 11th July, I have had an additional symptom - a numbness in my left hand slightly pins and needles slightly numb. This stopped then it occurred in the right hand several times.
Yesterday, I had 9 short episodes, two in my sleep and seven throughout the day. I’ve got through the night without any events and hope that I will have a day free of them.
By all means be impatient with the 'snake oil' salesmen. But I think it's unfair to direct that impatience towards people who are simply exploring available information in their search for answers. A gently posed word of caution perhaps. Suggestions of more reputable articles perhaps. Alfabeta may or may not be bothered. But as a member of this forum having read that response, (and other members will read it too), if that were my first impression of the response I might get, I might well be put off seeking opinions on articles for fear of being rubbished. It's not an isolated example either.
(Sorry Alfabeta. Not my intention to hijack your post!)
Hi, as a regular reader of this forum, while I do appreciate the time and knowledge fbirder devotes to helping members, I do agree with Portia 1974 that sometimes the replies come across as abrupt. Maybe I am too 'thin skinned' or perhaps just feel a little vulnerable at times, but yes, I would feel hurt and dismissed by some of fbirders posts. I'm sure it's not intentional, but that's how I perceive it. But thanks to everyone, fbirder included, for the excellent support
I tried responding this morning but it doesn’t appeared to have posted. I too was diagnosed with a B12 Deficiency four years ago following what appeared to be severe TIA like episodes that included hallucinations both visual and olfactory, the inability to walk, talk, or swallow for around 14 hours. In addition, I was having small episodes similar to what you describe. I am fortunate to have finally found a fabulous neurologist that is flexible and is willing to work with my symptoms. We started with monthly injections-not enough, every three weeks-not enough, and now I am at every other week with the option for a few additional ones when needed. I supplement with sublingual in between too.
When I was diagnosed my level was 85! My neuro wants me to stay around 1000. I feel my symptoms returning significantly at 700 now that I finally got it stabilized. He says I am the most sensitive person to B12 he has ever seen.
It was not an easy road. Many doctors offered anxiety and depression meds which I refused with the support of my GP who knew something else was wrong. It took almost two years after my first severe episode to be diagnosed. It took three neuros, two endocrinologists, and two allergists before I found this neuro who found the answer. He gave me loading doses until I felt better and has listened to me for four years.
Keep fighting and asking questions. I am not a doctor but I suggest you try self injections if they won’t listen. It is worth feeling better. It will take a while. I finally feel like I am building myself back even though I lost so much (memory, neuropathy, etc). It is a marathon, not a sprint.
I wish you luck and let us know how you are doing!
Thank you so much for your response - at last i know I am not alone on this journey. MyGP and nurses refuse to accept that my symptoms are b12 related and the neurologist I have spoken to wanted to take me down the mentally ill route.
I have accepted that it is a marathon- I supplement daily as well but I still get the attacks. I had 8 episodes on Sunday and theee yesterday and this will continue for about three more days then I will not get any for about four weeks then another five or six days worth - that’s if the previous cycles are repeated.
My assumption is that the first cycle, soon after my 12 weekly injection, is related to the b12 healing the damage and the second set my system calling for more b12. However, what I can’t work out is why, after the second bout, I go about 4 to 6 weeks without any symptoms prior to my next injection.
I do believe that I am getting better, however. I only get the auditory hallucinations occasionally, the tinnitus has stopped altogether and my mental confusion, lucidity and memory are much better than they were before my b12 deficiency was diagnosed.
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