Anyone on here experienced autoimmune inner ear disease?

[Auntbessy]

Hi, having a terrible time trying to sort out an ear problem which includes constant tinnitus and fullness in one ear. I am not dizzy but do go off balance sometimes. My experience of ENT has been hopeless. I stumbled across autoimmune inner ear disease on a mad google search. Symptoms sound similar.

[humanbean]

You might have this condition - Eustachian Tube Dysfunction :

patient.info/ears-nose-thro...

I've got this condition and I've been prescribed a steroid nasal spray as treatment for it several times. To be honest it doesn't really help much, and what little effect I do get doesn't last for very long before I'm back to square one again.

I'm considering paying to get balloon dilatation done, but the NHS has decided not to pay for this treatment for anyone. They still claim it is experimental, and have said this for several years (since 2011 I think) as far as I can work out.

nice.org.uk/guidance/ipg409...

[Auntbessy in reply to humanbean]

How did they detect your issue?

[humanbean in reply to Auntbessy]

By my symptoms.

1) I can hear crackling, ticking, and popping noises in my ears a lot.

2) My ears feel uncomfortably full almost all of the time.

3) The doctor who looked inside my ears said that the ear drum looked like it was "sucked in" towards the middle of my head which suggests that the pressure inside my ears is not balanced with the pressure outside my head. I can swallow, and I can hold my nose, shut my mouth and "blow", but the pressure balance between one side of my eardrum and the other is still not normal.

[ILR2019 in reply to humanbean]

I get blocked tube a couple of times a year. Im always perscribed Beclometasone although its useless. Im currently taking one spray twice a day for a month. Takes about 2 weeks to kick in but only after I spray numerous times throughout the day and even then the difference is minimal. I've never head of the balloon inflation or autoimmune inner ear disease though. But certainly blocked inner ear causes those symptoms

[DippyDame in reply to humanbean]

Thank you for the link humanbean ...I think you have solved the mystery of my occasional blocked left ear.

I wonder what the NHS will cut next!

Best...

DD

[humanbean in reply to DippyDame]

I don't think they've cut the balloon dilatation procedure. As far as I know they have never done it as a standard treatment. It can be done privately. Although I haven't investigated, I suspect it will cost thousands because it has to be done under anaesthetic.

[TSH110]

A hypothyroid friend has Meniers disease that causes balance problems might be worth checking out. I only got tinitis and some deafness the deafness improved on treatment. I just ignore the tinitus I am lucky that I can ignore it tho.

[mistydog in reply to TSH110]

My friend was told she had Menieres but once on NDT it disappeared

[TSH110 in reply to mistydog]

That is really interesting I will tell my pal cos o think she is on Levothyroxine only

[mistydog in reply to TSH110]

My friend wasn't even properly diagnosed with hypothyroidism. We worked through it together

[HLAB35]

My mother in law was never diagnosed in time nor was she optimally treated for her thyroid. The symptoms you are experiencing are what triggered an ear doctor to check her thyroid (her GP was hopeless). It was a rapid decline from there through dementia as well. She never took anything other than what she was prescribed by her GP and stuck to a very bland, dairy filled diet with basic salads and copious cups of tea (no chocolate, nor cooked veg or nutritious seeds and beans). I know b12 is important for hearing, but I also think she needed Magnesium as she was on diuretics that robbed her of electrolytes and her diet was low in it anyway (tea also binds to Magnesium). Dr Carolyn Dean has researched that giving IV Magnesium to patients who have been on diuretics with early signs of dementia can reverse these symptoms. She also finds that the same occurs with tinnitus. No big pharma money is going into researching the benefits of Magnesium injections to prevent our biggest health issues. Problem with Magnesium supplements when hypo is not much gets absorbed or sent to the right places, so maybe rubbing Magnesium gel on the area around your jaw could help a bit.? Checking RBC levels of Magnesium will find out if you have a deficiency.

[Mantras131]

I have regular problems with one of my ears (blocked, deafness, itchy) and use a Nettipot to help clear my nasal passages which seems to help the pressure in my ear. GP thinks it's down to wax build up. Sounds as if your concern is more complex. Hope it gets resolved soon.

[Auntbessy]

Thanks everyone, I’m definitely gonna try checking my magnesium levels as I have never done this before. I don’t think it’s menieres or wax build up. ENT and my GP has been so unhelpful ☹️

[HLAB35 in reply to Auntbessy]

RBC is the gold standard test used by functional doctors. Serum Magnesium tests will only show up a truly dreadful deficiency and you would probably already be in hospital if serum Magnesium was low.

[Fruitandnutcase]

Your question is really interesting Auntbessy, my left ear feels what I can only describe as ‘full’ all the time and I have constant tinnitus, I had my ears vacuumed last January and the same again this year so wax build up isn’t the problem. I often feel a bit light headed not dizzy and I’m sure it is my ear. I wouldn’t say I have a hearing problem, I feel as if I have but I’ve done that telephone hearing test the RNID offer and I’m always amazed that I can hear and I had one with the hospital audiometrician a while ago after I suddenly went deaf in that ear and that was ok too.

I have a lot of sinus problems and according to a specialist I saw at the dental dept recently it isn’t my teeth that are the problem, I was given a beclomethasone spray but like you I’m not sure it’s much help and I remember years ago the use of nasal sprays was a big ‘no, no’ and was stopped so I’m not sure about taking them now. I used to use a netti pot then they got bad publicity too.

I haven’t even reached ENT to be investigated. I’m now going to do what you did and look into autoimmune inner ear disease. I’m pretty sure my magnesium is ok, I know my B12 is and I’m going to try the suggestions everyone has made for you. Good luck with it and I hope you get somewhere with it all soon.

[DippyDame in reply to Fruitandnutcase]

Gosh...I've been getting a blocked left ear periodically. ...wondereded if It was hay fever but sprays don't help. It starts very suddenly and can last for either short spells (less than an hour) or longer. No wax. (recently checked) but I'm finding my hearing is occasionally a bit dull....until recently I could hear the proverbial pin drop!

Must do the RNID test

I have wondered if it is connect to my thyroid problems.

My B12 is good but I'm working on Mg.

Good luck

DD

[HLAB35 in reply to Fruitandnutcase]

I think if I took t3 it would have helped my sinuses and possibly saved me money on all these supplements as undertreated thyroid does seem to be the culprit for things like chronic sinusitis. I used to use NAC as it thins mucus and also helps detox the liver, but Serrapeptase seems to target sinus issues especially if you have polyps. It is an enzyme and breaks down the layers of dead tissues. The main problem with it is finding the time to take it on an empty stomach! Another thing is Goldenseal which eliminates candida - which, surprisingly, is often the cause for chronic sinus inflammation. Serrapeptase is not recommended for anyone with abscesses of any kind as in its 'enthusiasm' for breaking down dead tissue an abscess can burst which is especially bad if in the mouth or throat and drains into the lungs. Nor should it be taken if you are on blood thinners.

[Fruitandnutcase in reply to HLAB35]

I agree, when my Graves was being treated and my TSH was low I had no sinus problems at all, it’s only as my TSH has crept up that they are starting to come back. Unfortunately I’m still ‘within range’ so I know nothing will be done about it. Same as my cholesterol, when I was hyper my cholesterol was at its lowest ever, now I’m not my cholesterol is creeping up. I’ve discussed this with my GP who knew what I was on about but said I was ‘within range’. I’m always saying the NHS doesn’t go in for fine tuning. More’s the pity.

I’m just waiting for someone to offer me statins again (I tried them for a week with no knowledge of the side effects ) I very quickly had terrible muscle problems, so next time it is brought up I’ll mention the link between thyroid and cholesterol - ideally I’d like some levo to reduce my TSH to 1 or slightly below.

Suspect I’ve got no chance, I imagine my GP would expect me to have a heart attack or spontaneously combust should my TSH drop (and I reach my optimal point!)

Will go look up the things you have mentioned might help.

[Auntbessy]

That’s really interesting. Do you ever get ear pain deep inside or pressure behind that particular ear?

[Fruitandnutcase in reply to Auntbessy]

Occasionally get sharp pains deep in my ear but not all the time. It generally feels as if there is pressure below and around the ear. The easiest way to describe it is that I’m always ‘aware’ of my left ear and I never notice my other ear. When my body is running well I tend not to notice it, it’s only when something isn’t right I do - try explaining that to a doctor 😉

[Inishowen]

I do have Eustachian Tube Dysfunction with the symptoms you describe. I now use an ear plug when showering and washing my hair, which has really helped.

[Ell17]

Do you have a food sensitivity?

Dairy, for example, is known to cause a variety of ear issues in susceptible individuals. Gluten can cause a host of neurological issues, as well. Your immune system may very well be attacking your ear. But, if so, then something is triggering it. Investigating a possible food sensitivity seems a logical place to start.

Of course, quite a number of other things plus the kitchen sink could be a cause of the issues, as well. More often than not it's like going on a dig without a map, isn't it?

Best of luck.😊

[Batty1]

I have autoimmune inner ear disease had it for 30yrs was originally thought to be Meineres Disease. I was told during AIE attack only treatment is high dose of steroids, I refuse the steroids my personal choice. I go through episodes of complete deafness and it can last for few days or few hours and my attacks have gotten worse after I lost my thyroid but of course the ENT says no.

[Bing314]

I have PET....which means that the eustachian tube is stuck in the open position. There really is no cure. Once you have it, it's one more miserable thing you have to learn to live with. Very few specialists can even diagnose it. It took about 4 years to find out what it was. I have fullness in BOTH ears, whereby some lucky people only have it in one. I hope this is NOT what you have, but you might want to ask to be examined for it. I had no idea that it might be related to my Hashimoto, but it wouldn't surprise me one bit!

[Auntbessy in reply to Bing314]

What symptoms do you have?

[Junep]

I have Menieres disease have had it for around 17 years . I used to have what you described as fullness , with pressure as well , and mine was dealt with , successfully, by having a small tube inserted into the eardrum . Actually at first I had a grommet ,to test if it helped or not , well it did , greatly . I used to think of it as the effect of having a pressure cooker and turning that little thing on the top to let the steam out . Well it worked like magic for me .

Also I was told to watch the sodium / potassium balance . Funnily I have a dairy and gluten intolerance too . I know yours is not Menieres , but the fullness is the same I would think . Of course you have to find a consultant to do it as I found some I saw say they couldn't understand the concept of the tube helping . I assured them it gave me a life back .