Hi PA experts.
I’m looking into links between sudden hearing loss in an ear, tinnitus and PA.
There are many posts on ear pain but does anyone know a link to temporary or variable or just declining hearing loss at all ?
Appreciate your education
Thanks
The tinnitus drives me insane.
You might find this link of interest......... ncbi.nlm.nih.gov/pmc/articl...
Hi PAapr22,
I am laughing at being addressed as a PA expert, definitely not. 🤣
Okay dokey, let’s have a go at this.
So, PA/B12D can cause demyelination of nerves. There is an outer covering on nerves called myelin and vitamin B12 is required. So, when the nerves are missing some of the covering, they do not send signals properly. This leads to your individual symptoms.
The 8th cranial (brain) nerve has a fancy medical name and is to the ear.
So, that is the easiest way for you to understand why you have hearing loss and tinnitus.
People can have a tendency to read lengthy, technical research papers which can be tiresome. Although, I find it is far easier to learn a tiny bit of anatomy to understand why your individual body is being mischievous.
Diolch yn fawr
Thanks. That helps. And I wonder if it can be variable. So as nerves possibly improve so can hearing ?
Absolutely PAapr22,
As the insulating covering grows back, nerves can work more effectively and symptoms can and do improve.
Sori, how re-miss of me, I did not reply to your last post regarding which blood tests to ask for with regards to monitoring AMAG. An oversight on my behalf.
You are now attuned to your own body, symptoms and know your individual requirements for Hydroxycobalamin/cyanocobalamin. You are more than welcome to ring your GP Practice and wait 10th in queue for an appointment. So, they can order what they feel are appropriate blood tests which will be taken by a phlebotomist. The doctor will most probably order the bog standard FBC, Urea & Electrolytes, Liver Function Test, folate, possibly Vitamin D which will most probably all come back ‘within range’.
So, I will cut to the chase. The PA Society and other B12D organisations are working extremely hard on trying to educate doctors about this illness/disease. Although, the NHS are in a sorry state of affairs and are trying their best to recover from a pandemic.
Problem 1 - doctors generally do not understand the disease. Therefore, they do not know how to effectively recognise, treat it nor monitor it.
Problem 2 - if I had a batch of blood tests where I live the results can come back in range. But I went 20 miles down the road, some could be flagged as below range. Different Trusts/Clinical Commissioning Groups/Health Boards/Health Boards and all in one tiny island.
However, if you know some ‘stwff’ there is some Monitoring, Evaluation and statistical tool called a Patient Reported Outcome Measure. In Patient Centred Care, I would say the following :-
Alright PA,
Have a seat. How’s the running ? Children doing ok ? How’s work going ? Still having physio ? Now you had AMAG diagnosed 2 years ago so, tell me any problems in your :-
1. Head area ?
2. Neck/shoulders ?
3. Chest ?
4. Abdomen ?
5. Groin/buttocks ?
6. Legs ?
7. Feet ?
8. Arms/Hands ?
There are plenty of Charts used in Medicine. We like to Keep It Simple by using a plus or a minus. People who have been diagnosed 10 years are reporting that have not been monitored.
So, in your opinion, what do you think would be a good Plan ?
Hi, I wondered what is the difference between having B12 deficiency and PA?Thanks
It is a very good question but rather long winded. I generally write PA/B12D to cover all bases. Although, I am conscious that this is PAapr22’s post.
I enjoyed this explanation 😊 My tinnitus only started once I began EOD injections (or at least that's when I noticed it) and now comes and goes as it pleases. Interesting to understand why!
My hearing is really odd. I went for a hearing test to be told that I needed hearing aids and to go back in a week to speak about it and to have a more specialised test. Went back, had the test, to be told that my hearing was normal! I was asked if I'd had a cold or sinusitis at the time of the first test - no I didn't. The audiologist was totally confused and told me to come back if I had further problems. I get days or weeks when I can't hear properly, then it goes back to normal again. Maybe its due to my P.A., I've never thought about it before. As for the tinnitus, it arrived one night out of the blue many years ago and has never gone away. I wish it would 😔
Thanks. That’s so true for me. Another symptom to add.
I also started to suffer with tinnitus .I still csnt use a landlind phone.Tinnitus goes up yo sn unbearable pitch .
Scalp affected .
Nerves buzzing .
I feel very irritable kn thsrs moments.
Same with s computer scree..
Typing this sets it off also givex visual problems.
I had an ear pressure test .
Normal.
Hearing test normal.
Brain Mri some anomalies but no concerns from the neurologist.
It's definitely brain nerve messaging gone wrong.
Big improvements/ healing but took 3 years before I could watch TV.
Headaches migraines.
There are tinnitus clinics.
I didn't go as bh thenhad found coping mechanisms .
White sounds help some .
Just irritated me-
I've anything mh hearing ix better.
Sensory overload z problem now .
Even unwrapping present impossible now uncomfortable.
Ax fof plastic wrapped things k leave the room.
For me regular B12 is the only thing thats given improvements.
On no other medication.
While most of my symptoms have resolved with 9 years of daily injections, the tinnitus is still there.
My tinnitus developed as my B12 was falling, which I had no idea about at the time. Most symptoms have declined and disappeared with EOD self-treatment. Except tinnitus!
It's been a running joke in my house that I don't hear the doorbell, and as I see clients at home that's a bit problematic! When I started loading doses in December '23 I began to experience bouts of tinnitus and sudden deafness in my left ear, thankfully only lasting hours or even just minutes. I interpreted this as the nerve healing, and with injecting 2/3 times a week it has decreased to being an occasional happening. But I do seem to have lost the doorbell hearing frequency for good, gonna have to get a buzzer!
My wife and I have tinnitus. I have PA, she does not. She has been taking a daily dose of lipoflavinoids for about 90 days she ordered from Amazon, I have not. She says she has noticed a marked improvement in the frequency and volume of the buzzing. I suppose I will give them a go and report back.
thanks. Would really appreciate this.
CBD oil and PA 
Thalassemia and PA
UK NHS - PA treatment & management experiences 
