Ringing ears

[Ljbillo]

Hey guy's.

Is there anything I can do for ringing in my ears? I have pa and know this is 1 of many symptoms. Just wondering if theres anything I can do/take to help with the noise. Would be nice to hear silence when sitting in a empty quiet room 🙃

[Sleepybunny]

Hi,

My first thought was are you getting enough B12?

I have more than one type of tinnitus. If I get enough B12 then the high pitched tinnitus disappears totally although I seem to be stuck permanently with the pulsing form.

Are you in UK? I'm asking because patterns of treatment and type of b12 used can vary from country to country.

I wrote a very detailed reply in this next link to another thread which hopefully will have some useful info. There are links to b12 websites, B12 books, UK B12 documents/article etc. Some of the info may be UK specific.

healthunlocked.com/pasoc/po...

[Ljbillo in reply to Sleepybunny]

Hey sleeping bunny.. I am in the uk and currently on b12 injections every 8 weeks. I have a constant ringing in both ears and every so often the left ear changes and goes more deeper but soon stops after a day or 2 going back to the usual high pitched ringing tone. Just seems to not go or get any better even after a injection.

[Sleepybunny in reply to Ljbillo]

Hi again,

How many loading doses did you get when first diagnosed with b12 deficiency?

Links below have info about UK recommended treatment.

I assume your GP is giving you jabs every 8 weeks due to the presence of neuro symptoms.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

[Ljbillo in reply to Sleepybunny]

I had the loading dose for 2 weeks when I started back in the summer then put on 8 weekly due to neuro symptoms which wasnt getting any better so was giving another 3 weeks of loading doses that I finished 2 weeks ago and now put back on every 8 week injections.. I have asked to be referred to a neurologist but they said they're isn't a lot they will do as I'm on the correct plan of injections every 8 weeks

[Sleepybunny in reply to Ljbillo]

Hi again,

loading dose for 2 weeks when I started ... then put on 8 weekly due to neuro symptoms which wasnt getting any better so was giving another 3 weeks of loading doses ...put back on every 8 week injections..

Did you have neuro symptoms at start of treatment?

Neuro symptoms can include tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, memory problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc.

Does your GP have a list of all your symptoms, especially any neurological ones?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.

Link about PN

nhs.uk/conditions/periphera...

UK recommended treatment for b12 deficiency with neuro symptoms is

An every other day loading jab for as long as symptoms continue to get better then a jab every 2 months.

There is not set time limit for these every other day loading jabs; if improvement continues so should the every other day jabs. They could go on for weeks or even months.

See BNF, BSH, NICE CKS links in my other post. GPs can check this info in their BNF book Chapter 9 Section 1.2

BSH guidelines does suggest possibility of a review of every other day loading jabs after 3 weeks worth. My understanding is that if there is a review after 3 weeks of every other day loading jabs, the jabs should continue if improvement (symptoms getting better) is continuing and only change to every 2 months/8 weeks if improvement in symptoms has stopped.

Do you know why the GP put you back on 8 weekly jabs after you had three weeks of every other day loading jabs?

Not getting optimal treatment could put a patient at risk of further deterioration and increase chances of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

I wonder if your GP has misunderstood BNF guidance as with neuro symptoms I would have expected you to have been on every other day jabs for at least several weeks at start of treatment not just have them for 2 weeks.

"I have asked to be referred to a neurologist"

I suggest putting referral requests into a brief, polite letter to GP that also contains evidence to back up request eg symptoms list, test results, family/personal medical history, extracts from UK documents etc.

Have you also been referred to a haematologist?

NICE CKS link in other post suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

Do you keep a symptoms diary that tracks changes in symptoms from day to day and when you get jabs? This can be useful evidence of deterioration/improvement in symptoms.

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

It can be useful to take a supportive person with you to appointments if relationship with GP/specialist is strained. Even better if person has read about b12 deficiency/PA and understands what you are going through and what is advised in national guidelines.

3) Some parts of UK are using out of date guidelines on treatment of B12 deficiency which do not match the advcie that is in BSH guidelines.

I suggest you track down the local guidelines for your part of UK and compare them with national guidelines eg BSH.

"I have pa "

Have you considered joining PAS and ringing them?

They can suggest useful info to pass to GP. May also be worth joining a local PAS support group if you become a PAS member.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Help for GPs

May be worth pointing out the following to your GP.

1) PAS website has section for health professionals. It is free for your GP to join PAS as an associate member.

pernicious-anaemia-society....

2) PAS website has section with useful leaflets that some PAS members print off and pass to their GPs eg

" An Update for Medical Professionals: Diagnosis and Treatment "

pernicious-anaemia-society....

I am not medically trained.

[Nackapan in reply to Ljbillo]

I get temporary relief by pinching my ear. Also different head movements can help

I still csnt talk on a landline telephone as the pitch goes up so high it hurts and then goes into a headache. Mine actually gets worse after an injection

I call it the b12 buzz.

I can now manage to 'zone out' with my eyes shut which calms it down.

Been bad today as tried to wrap a few presents. Couldnt do it .

If you csn best to listen to an app. Someone suggested to listen to 'white noise' its supposed to help.

Sometimes if my ears pop it gives relief. I used to get it constantly but I do notice quiet times now.

[Ljbillo in reply to Nackapan]

Thanks Nackapan all advise helps and will definitely try the white noise app.. my ringing doesn't seem to disappear at all which really irritates me especially when I'm having an hour piece from the little ones or as I'm winding down for bed. Forgotten what it was like to hear nothing but silence

[Gambit62 Administrator]

This is an article by ACtion on Hearing Loss (formerly - some years ago now) the RNID) on Tinnitus.

actiononhearingloss.org.uk/...

I haven't looked at it in any detail - but tinnitus tends to be a condition that GPs dismiss as untreatable whilst there are actually a number of different things that people can try.

There are probably some forums on HU specifically for tinnitus sufferers that may be worth taking a look. (Go to My hub - click on view all of my communities and then click on the Find a community link).

I've had low grade tinnitus for year - generally I only notice it if there is silence or a focus on it - so I'm lucky - but I know many others aren't so lucky.

[Fine]

I was given Betahistamine for my tinnitus, has helped with the pulsating when laying down, have the odd moment but definitely an improvement.

[Yogijo]

Tinnitus can be caused any number of things not necessarily B12 deficiency. I developed tinnitus after an ear infection. The British Tinnitus Association also has a forum on Health Unlocked if you’re interested. There is no cure for tinnitus but there are practical steps for managing it and also ways of dealing with the psychological aspect e.g. relaxation, mindfulness, CBT, yoga. If you’re interested in knowing more about it take a look here takeontinnitus.co.uk/#home or here tinnitus.org.uk