Brain fog

[Alfabeta]

Hi All

I’ve heard this term used regularly by bloggers and it is used on official sites but do it is a bit of a ‘catch all’ term!

I am not sure if my ‘brain fog’ is the same as other people’s.

My ‘brain fog’ occurs sometimes just after my 12 week b12 injection and then somewhere between weeks 6 - 8.

I go into a semi conscious state then recover in about 5-10 seconds after which I am confused and poor short term memory - the memory of recent events are then gradually recalled.

I used to get tinnitus during these events - the sound of poor radio reception on the old radio sets followed by a sense of euphoria and auditory hallucinations- i haven’t had tinnitus for over a year now and the AH is infrequent.

The ‘events’ tend to occur over five days getting less in severity and frequency each time.

Is this what is meant by ‘brain fog’?

[fbirder]

No. Your symptoms sound more like absence seizures.

Brain fog is a difficulty in thinking clearly. Forgetting words and names, putting the oven timer in the oven or your spectacles in the fridge.

[Alfabeta in reply to fbirder]

Thank you - I do have brain fog by your definition it’s just that the absence seizures precede it.

[clivealive Forum Support]

Hi Alfabeta your "brain fog" may just be one of those symptoms not yet quite "fixed" by the B12.

The "sorry - I forgot what I was going to say" happens to me a lot even after 46 years of treatment so perhaps the 13 year gap between gastric surgery and eventual diagnosis of P.A. caused some irreparable damage.

Hopefully this is not so in your case

I'm not medically trained so cannot give you a definitive answer.

[Polaris]

The neurological, auditory hallucinations you describe are the same as experienced by my relative, (vegan/vegetarian for many years) and misdiagnosed with ME, then much later with dementia. She was only diagnosed with B12 deficiency within the last few years and started on B12 supplements. When these had no effect whatsoever, only then were injections given.

There was a massive physical improvement straight away but it was too little, too late and, when auditory hallucinations, etc. were mentioned, her surgery used this as an excuse to class her under mental health only, stopped her B12 injections and only prescribed antipsychotics, ignoring all other physical and obvious evidence of B12 deficiency.

This type of symptom used to be well known and is well documented in research studies but many medics and psychiatrists refuse to acknowledge this.

b12deficiency.info/media/10...

[fbirder in reply to Polaris]

Note that I’ve spoken with Professor David Smith via email and he says that much of the stuff he is supposed to have said about B12 is fake news.

If anybody would like to check what he really thinks then feel free to email him yourself.

[Marz in reply to fbirder]

OK so was his talk at the PAS Conference also fake ?

[Polaris in reply to fbirder]

What do you mean exactly FBirder ?

The links given were to research papers and BMJ article on megaloblastic madness written by Prof. D. Smith, not the Daily Mail 🙂

[fbirder in reply to Polaris]

Which is why people should look at the original papers.

[Alfabeta in reply to Polaris]

Thank you. . I had exactly the same experience. I was given an ‘expert’ to speak to by Benenden and she took me down the route of depression and psychosis !

I was virtually vegan and was put on Omaprezole for on and off 15 years - not surprising that I became b12 deficient. I won’t speak to the doctors or the nurses about my condition even when they ask me. I just say I’m so grateful for the injections.

I think the problem is that they do not understand that b12 deficiency is an illness in itself with its own defined symptoms some of which cross reference with PA.

They assume that, if you become b12 deficient, then you automatically get PA.

In my opinion and in my case, I think they are wrong to make this assumption.

It does help me to share and receive other people’s experiences- thank you for sharing.

I

[Polaris in reply to Alfabeta]

I'm so glad you did Alfabeta and hope you continue to make good progress with injections.

It is unfortunately sad but true that it is better not to mention any symptoms that could be misconstrued as psychiatric or depression, etc. because the system is set up for surgeries to obtain more income for a mental health diagnosis (top of the list) than say, thyroid disease, which generates very little - B12 def. probably nothing ?

Looking back over the years at my sister's medical history and, indeed, other family history, I can see now there were many obvious signs but we'd never heard of PA/B12 deficiency or, indeed, autoimmune disease back then. There was a lot written about ensuring complete proteins in a vegetarian diet but vitamin B12 was never mentioned as far as I know.

One reason for becoming vegan/vegetarian/gluten free was partly because of having so many allergies (she was possibly coeliac), as well as having had an early gallbladder operation, Hashimoto's hypothyroidism, etc.

In hindsight, although autoimmune disease runs through the family (Northern European ancestry), I believe my sister's long term limited diet not only lacked B12 but also the important amino acids and nutrients that meat would have provided. This seems to be borne out by Dr Terry Wahl, who was at one time in a wheelchair with serious neurological problems and only recovered on changing from vegetarian to a paleo diet!

So, my thoughts as an old crone 😀 having known many vegetarians over the years and respecting their choices, I am very worried now that the long term effects do not appear to make for a healthy neurological old age 😳

[Alfabeta]

I think, to be fair, that the Vegan society make it very clear that one has to supplement b12 if one is Vegan. It’s on their website.

Many extreme dieters - often young women, often schoolgirl anorexics - become b12 deficient and are diagnosed with ME because of having no energy and becoming delirious.

My sister had diabetes 1 and an obstruction in her oesophagus and was on 20 mg omaprezole- she died of a heart attack! My mother likewise - 20mg omaprezole for years - she developed dementia.

One has to have b12, b9 and iron in ones diet but as anyone with PA will tell you, it makes no difference if one has insufficient stomach acid to absorb it.

I find it amazing that one reads time and again about medical ignorance of dietary and absorption problems with b12 and doctors, my own included, continue to virtually wallow in their ignorance despite what their patients tell them - they never seem to treat the symptoms!

My doctor said that tinnitus was not a symptom of b12 deficiency - it is and it’s on the NHS website!

He said that auditory hallucinations are not b12 deficiency related - it is.

To leap from auditory hallucinations to a diagnosis of schizophrenia is unfathomable just as the delirium and lethargy caused by b12 deficiency should be diagnosed as ME.

I see a major scandal in years to come when the facts are fully disclosed.

[Polaris]

I'm so sorry about your sister and mother alphabeta.....

There have been questions asked in the House of Lords about the neurological damage caused by undiagnosed B12 deficiency, petitions, letters to MPs, books, articles in the press, not to mention all the excellent work done by Dr Chandy, Sally Pacholok, Tracey Witty, the PAS and others over the years, so one can't help wondering why there is still what seems like deliberate obstinacy/reluctance to read research and give adequate B12 treatment.