menieres

[Bluerose57]

hi I’m new to group

Diagnosed menieres about 8 yrs ago

Suffer from severe hearing loss tinnitus

Recently tinnitus just became very loud and leaving me unable to work and socially isolated

Slowly loosing my confidence

Anyone else feel similar as I feel alone

X

[Happyrosie]

I’m sorry for your problems, though I personally do not have the same. Can I suggest you look at the website of Tinnitus UK?

Do you live in the UK? If not, the following won’t apply

There are support groups, so you might find one local to you, on Tinnitus UK.

Also, your local authority (such as County Council) may have a directory of support groups in your area.

your doctor’s group of surgeries should employ what’s called a social prescriber. You might be able to find out about this by looking at your doc’s website or phoning the receptionists. They should be able to suggest something for you.

[Bluerose57 in reply to Happyrosie]

Hi

Thank you for taking time to reply .

I joined this group thinking it was tinnitus support group ?

I’m not very technical minded so is it not ?

I’m under ENT but they can’t seem to help anymore and nhs hearing aids just not working enough now .

Anyone suggest any good companies to try for private aids ?

I don’t know how I go back to work with this high level noise

I am nurse myself and work was great distraction focusing on other people issues and helping them.

Just want to stay in my room at moment

I just hope this gets better enough for me to work and just watch tv

[Hidden in reply to Bluerose57]

Hi - may i recommend Julian Cowan Hill on You Tube or he has a website and an app 'Quieten' - he had terrible T for a very long time and has recovered...he explains what causes T and the fluctuations and has helped me enormously. He trained as a CST and Psychotherapist and does interactive zoom meetings - i too am off work and have socially withdrawn because of T and all that goes with it, i am on a journey of doing what i can, and i understand how challenging it is.

[TinnitusUKPat Partner in reply to Bluerose57]

Hi Bluerose57

I think ENT have reached the limit of what they are able to support you with. They may see Menieres as having moved past their work area, as there aren't many surgical procedures they can undertake which would make a difference in your Meniere's symptoms, unless your balance has changed.

You don't mention balance difficulties or dizziness, which are common to Meniere's, so in that scenario it would be more likely that an audiovestibular physician could be of help.

The Meniere's Society - another UK charity - has an explainer piece about how the condition progresses which may be helpful to look at for people unfamiliar with it: menieres.org.uk/information...

I'm not certain that purchasing hearing aids privately will make that much of a difference - functions may make it easier to use sound therapy or use bluetooth connectivity to send audio directly to the aids to help with listening, but ultimately their function is to help you hear.

A lot of the impact of tinnitus can be emotional and psychological - wanting to stay in your room and retreat from doing things that are fulfilling or that you enjoy would be an indicator that tinnitus and Meniere's are changing how you feel about yourself.

In that, the 'feel' part is important - how we feel about ourselves, about tinnitus, about big changes to our health are not fixed points. Just as we can feel low or discouraged, we can also move forwards to be able to live with our tinnitus, with changes in our hearing and live a good life despite these challenges.

[tomlwatson]

Hi Bluerose,

I too was diagnosed with Ménière's disease with moderate to severe hearing loss about 10 years. The loss of confidence can sometimes be the worst, especially if you were self confident to begin with. Habituation has been my friend and many UK med centres offer some training to get started. Habituation is not a miracle and doesn't restore your hearing but it's a coping mechanism and for me, 10 years on, coping is good.

I've tried private hearing aids, Widex brand that were very good but have since switched to NHS Phonak brand that are better as technology has improved.

Obviously I'm not a doctor and don't know your exact condition but those with Meneiere's can learn to live a good life. Things will change. Do what you can do. Hope for the best.

[Happyrosie]

this is a support group in its own way, but if you look at the tinnitus UK website you’ll see in-person or Zoom groups.

Many people who’ve been on Health Unlocked here have said they’ve been helped by these support groups.

Are you in UK?

As Seabob has said about Julian Cowan Hill. And he has a very good book.

[Beesmac]

Hello - so sorry to hear all the problems you are having. I see you have mentioned your NHS hearing aids not working as they should but perhaps yours need adjusting?? All this is done on the computer in the audiology department. I don’t have Menieres but do have profound hearing loss and extremely severe tinnitus. I also purchased some very expensive private hearing aids which just sit in the drawer. My NHS hearing aids are far far better. They don’t help with my tinnitus - that is something I have to try to control myself which is extremely difficult as each day is different. Stress and noise are my worst enemies. If you feel you are badly stressed by this then your GP should help you. Hope you feel better soon x

[Enort]

Hey Bluerose, have you tried with the Epley Manoeuvre? Link below:youtu.be/CPLOd6vqWKI?si=V0I...(Not working as expected?)

Clearing your ear canal from earwax, professionally would also help.

Meditation and walks in the forest does help too.

[Tanney]

hello. I have bilateral meniere's disease. I've had it for almost 40 years. Allergies make my symptoms worse...especially this time of year. I've found a couple things helpful in reducing the very loud tinnitus episodes (as well as the other MD symptoms) I get. May I suggest the following:

1. use a nasal flush twice/day followed by a good antihistamine nasal spray. Do not use an oral antihistamine. Make sure you use this twice/day

2. are you taking betahistine for your MD? If not you might want to start a daily dose. If you need specific info on this let me know. I've found that Betahistine helps minimize all MD symptoms.

3. when the tinnitus episodes are particularly bad I take 0.5mg of Ativan. Ativan seems to calm down the tinnitus to a more normal level.

4. are you taking a diuretic for MD? This can help reduce the fluid buildup in your inner ear that can affect tinnitus level.

Let me know if you need more info on MD. I've been through most procedures over the years.

[Bluerose57]

thank you everyone for all great advise

[Bluerose57]

I’m already on betahistine daily and have had diuretic but they didn’t help .

I only occasionally experience vertigo

I use white noise too which helps sometimes

It’s not easy living with all our debilitating invisible symptoms is it guys

Big applause to us all for trying .