Tinnitus is driving me mad!!!

I’m lay in bed With this ruddy tinnitus. I have no idea if it’s ms related… I just needed a moan Wanna put my hands over my ears so I can’t hear the noise. It really does sound like my husband should be able to hear it but no just me. Argghhhhh Mandymoo xx

Hi

I have this too. Never goes away, just sometimes louder or quieter.

Have had audio tests and nothing wrong with my ears or hearing. Used to put it down to going to nightclubs with very loud music in my youth. Have researched it and is apparently a symptom of a number of things - MS, Fibromyalgia, ME etc etc. Think mine is, especially as I have recurrent dizziness and vertigo that they initially thought was labrynthitis. Do you get this too?

Can still hear it if I put earplugs in so it is definately ‘all in my head’. Suggestions over the internet are to listen to music, white noise or pink noise. Maybe worth a try. Didn’t work for me at all, just annoyed me, but sounds like you’ll give anything a go at this stage. Your GP may refer you to an ear, nose and throat specialist for the audio test stuff to rule anything else out.

Wishing you a ‘quieter’ day.

((Hugs))

Cx

I get this all the time - much louder at the moment as I am going through a bad attack. I’ve had it for years so I can switch off to it a bit but I find listening to someone talking on an audio book that I know really well (so I don’t have to concentrate to follow the plot as I am too tired for this) helps me a lot.

The other suggestions sound good. I had to find something that helps as it is horrid.

Lynn

I have tinnitus in both ears thanks to my MS. It is unbelievably annoying in the beginning, but believe it or not, you actually get used to it after a while.

The worst thing to do is to try and drown it out. The best thing to do is to accept it - there is no treatment and it ain’t going anywhere, so better to get used to the new sound of silence! However, if you are struggling to sleep because of it, you can buy things like long playing white noise, rain, wind, etc, noises which, when played quietly, help to mask the tinnitus.

The reason it’s a bad idea to try and drown it out is because of the way the brain works. Basically, the brain ignores stimuli that are constant - it is much more interested in change. (That’s why you don’t feel your clothes or your watch or jewellery on your skin all day; only when your attention is drawn to them.) So, crazy as it might seem, it is best to try and always be able to hear the tinnitus noise. Playing something that is always subtly changing keeps the brain focused on it instead of the tinnitus and so the tinnitus isn’t processed so strongly and stops bugging you! If you change your concentration to focus on the tinnitus, it will suddenly seem much louder - this is because the brain is now focused on that noise, processing it as if it is important to you.

Of course, there are physical causes of tinnitus which can be fixed, so if you haven’t seen ENT, you should - it might be fixable!

Karen x

Hi Mandymoo, I have it all the time too. Have had audio tests and have mild hearing loss but they say the tinnitus is probably caused by MS. Mine is a high pitched hissing sound. Does go up and down in volume but is there all of the time and usually loud.

I bought a ‘sound box’ from Action On Hearing Loss (online). It has various noises, rain, sea, white noise etc. The one that’s best for me is ‘summer night’ which is the sound of crickets singing and very high pitched. As Karen says, it’s recommended to have the volume below the volume of your tinnitus so it does not drown the sound out, but distracts the brain.

It is very distressing sometimes when my symptoms are bad when it is very loud. Sometimes there’s actually a sort of click in my head and the volume goes up. Feels like my head will explode. Actually of all my symptoms, and I have many, I find this one the most relentless and upsetting.

Also many drugs I have tried for MS symptoms put the tinnitus up… so I’m now struggling without any drugs.

I have also joined the British Tinnitus Association which sends a quarterly magazine called Quiet. There is lots of research going on into it and can only hope they find a cure one day. But I think there are so many different causes of it, it might be a long way off.

I’m trying now to use the sound box less in hope of getting used to it.

Pat x

Hi everyone, Ive had tinnitus for years now and hadnt connected it with ms so I didnt mention it to my gp thanks for that. I have my first neuro consult next month so will add it to the long as your arm list of symptoms. Thanks Mandymoo and Friends. (((hugs))) F.xx

Thanks all,

When i first wrote this post I didn’t think it was syptomatic of MS but it now sounds as though that too could come under the massive umberella of MS.

If I’m honest I’m too scared to add it to my list and the list can sound very very long and that has already proven to go against me when it comes to diagnosis. ie “your syptoms don’t fit neatly into a box”.

Do I tell the GP and Neuro about this or just keep quiet?

Biggggg Sigggghhhhh

Mandymoo x