Tinnitus - posting for traffic

[ISpentTheDayInBed]

My DH had chemotherapy about four years ago. One of the side effects was problems with hearing damage/loss. It didn't happen straight away, but about 18 months after he finished his treatment he developed really bad tinnitus. It may not be chemo related but I suspect it is.

He is suffering really badly at the moment and I have no idea what to do. He has had a referral to ENT and they weren't able to offer anything. I am at my wits trying to help him, but I don't know what I can do now It is such a horrible and distressing condition. I would like him to get a referral for another ENT appointment to look at some help with masking the tinnitus or even some CBT to help deal with it, but he won't do it.

I am so upset, I can't bear to see him suffering in this way, annoyed that he won't go back to GP. Also, he is getting quite deaf and can't hear me and have the TV so loud.

I would be really pleased to hear or anyone elses experiences of this

Do they not have a tinnitus clinic? He needs an audiologist rather than an ENT Consultant.

Has he tried white noise? My clinic issues in ear noise maskers, and white noise machines. These are the ones:

www.puretone.net/pt_generic_tinnitus.html (I have the MM10)
www.puretone.net/tinnitus_accessories.html (I use the relaxation therapy ball)

In my area the clinic referral must come from ENT, not direct from the GP. He should contact PALS and establish why a referral has not been made/ was not deemed suitable.

Hi OP, I am so sorry for what you have both been through. Tinnitus is the nasty sting in the tail for your husband after all he has experienced.

ENT diagnosed my tinnitus shortly after I had a traumatic birth and an epidural. I was also taking heavy pain relief for a broken toe. Oh happy times!

Nobody could say why the damage occured in my ears for sure but I was really depressed about it for a bit. Especially after a tough time. When I was diagnosed they gave me a lot of information about stuff that could help. Check out Action On Hearing Loss' website. The thing that helped me initially was using a white noise machine at night (I choose a natural sound of rainful). I never thought I would get used to it. Four years on I can say honestly that I am only aware of it when in a silent room. Now at night I listen to Radio 4 Extra so I don't have to listen to the hissing and pulsitile tinnitus. Obviously this is only my experience and tinnitus and the level of noise you have to put up with is so personal. There are online support groups nd forums. Action On Hearling Loss has also produced information for partners and family members who live with tinnitus sufferes too. I made my husband read it in the early days. You kind of greive for your loss of peace and loss if hearing. My tinnitus has remained the same from year to year.

• Rainfall!

There are hearing aids available that block tinnitis. A friend of my dad's has one and says it is amazing. Don't know the name of it but they do exist.

I have low level tinnitus (after ear infection) and it can be horrible at times. When it is bad (which is only sporadically) it is very intrusive and tiring and can seem to take the enjoyment out of life. I am too embarassed to tell anyone at work - which is silly, I know, but I feel there is some sort of stigma aound it. Mine gets worse when I'm tired and/or stressed so getting enough sleep/relaxation is key. Music/radio in the background helps, as does being outside in the garden/countryside with bird song, running water, etc (or audiotapes I guess, if you can't get out, but never tried these). I find reading a long book hard now so thinking of switching to audiobooks. It really is a condition you have to learn to live with and adapt to, and weirdly for me this sort of 'acceptance' reduced its impact to some extent. There was an interesting R4 programme on it maybe 6 months ago - might still be available?

My friend developed severe problems with this after returning from tour of duty in Iraq caused by noise of fighter jets etc. Only thing that helps her is white noise machine or low level radio.

I've had it for a few years and fir the most part you do learn to live with it. I struggle with the spikes sometimes.

If they've done a brain mri and all associated tests then it comes down to white noise aids. It's takes at least 6 months to retrain but they do have success.

It's grim whilst trying to get used to the horrendous noise in your head but gradually it does happen.

Ispent my dp also has tinnitus following chemo, he was immediately after his treatment (2 1/2) years ago so we are a bit further down the road in that he has had a couple on ent/audiology appointments. He has been told a hearing aid may help but he doesn't want one and he has a white noise machine. i use it to get to sleep he has only had it a couple of weeks so I've not noticed any change yet. How is your dp getting on otherwise?
Those who use white noise how long did it take to have an effect ? How did you use it ?

My sympathy, I had pulsating tinnitus after an emergency braking incident. It did mainly resolve after a few months, but it was really really annoying and distracting, and loud noises were actually painful.

There are some tinnitus apps which distract your brain, and over time desensitise your brain to the sound. I know someone who developed one (can't remember which) and they're supposed to be very good. I was going to start when my tinnitus went away.

Thanks everyone for sharing your experiences and for the links etc. I've had a quick look at the apps this morning and and will check out the Action on Hearing Loss website tonight when I have time.

It's not bothering him as much this moning, but last night he was lay on his side curled up with hands over his ears, and was really upset. It's distressing for me too when he's in that state.

blamethecat other than the tinnitus he's getting on well. He had grade 3 stage 3 bladder cancer and was told he needed to have his bladder removed. He chose not to and had radiotherapy and chemo. He had a clear cystoscopy last month and has now been moved to yearly reviews. I hope your DP is well

My husband suffers from this. When it first occurred it was very difficult to deal with. As time has gone on (three years now) he can 'manage' it on most days. He plays the radio softly at night to give his ears something to 'lock' on to. White noise, as mentioned upthread, can also help. Depression often comes with this condition as it's so all-encompassing and life changing, so be sure to visit a doc for any medical help if need be (anti-depressants greatly helped a fellow sufferer from the local tinnitus group my husband attends).

Talking to others (and helping newbies) in the same position can also really help. Get in touch with the British Tinnitus Association to find a group local to you and get involved. It's not going to go away, so he needs to adapt and embrace it and find new ways to cope. It will happen in time. Good luck.

I had tinnitus for a short while, and I found a web site (which I can't find now) of a London-based consultant who treated it, which explained that it was essentially caused by the brain rewiring itself to pay attention to random noises that always exist in the inner ear, that would normally be filtered out in the brains of non-sufferers. The site suggested various strategies for dealing with it, including white noise generators, but what I took away from the web site, that apparently worked for me, is that you have to try and stop yourself having an emotional reaction to it. If you are upset or annoyed by it, that means it's an important sound, so the brain will continue to pay attention to it.

I used to mainly get it at night while lying in bed, and when it happened I'd consciously try not to be bothered, tell myself it didn't matter, and to think about something else.

I guess people might be annoyed if you tell them to not let it bother them, as if that's easy, but when you understand this explanation of what causes it, it makes sense that trying not to care could literally fix the problem permanently.

Obviously I don't know if this will work for everyone, or even that it is the reason mine stopped, but I thought it was worth mentioning.