Hearing noises.

[jackrussell]

A few weeks ago I had a flare, it eventually calmed down with medication, however my symptoms usually involve ( amongst other things ) ears and sinuses with some loss of hearing , but this time I am suddenly hearing almost continual loud humming/ buzzing and music in my ears , I am very concerned about this as I am at a loss as to what to do about it. I suspect it’s some form of tinnitus ,but it hasn’t happened before . I have 2 hearing aids due to the Vasculitis, I just wonder if anyone has experienced this,and what ,if anything can be done about it. I am not feeling I’ll at the moment and I try to ignore it ,but it is very unpleasant.

[KellyInTexas]

I do not mean to cause alarm at all, but please let your doctor know . The temporal lobes are known as the musical lobes.

Temporal lobe epilepsy can sometimes cause you to incorrectly hear music that’s not real. So can a small TIA.

A Small TIA can sometimes be a pre cursor to a more serious cerebral vascular event.

Of course, I’m not a doctor. I do not mean to cause unnecessary stress.

I am , however an epileptic. I have temporal lobe epilepsy, and my neurologist recommended the book The Man Who Mistook His Wife For A Hat to me, by Dr Oliver Sacks. One of his patients hallucinated music. Of course, so have I, since childhood. I never knew it wasn’t real. It’s only with the onset of partial complex seizures.

( I didn’t even know I was having seizures!)

In dr Sacks’ patient’s case, it was stroke damage to the temporal lobe.

So hearing music needs to be seen right away I think.

Vascular swelling in my brain also causes visual hallucinations... currently I’m in Rituximab and steroids to bring it down.

( underlying cause of all these troubles is Lupus / Anti Phospholipid Syndrome-antibodies causing havoc on the lining of the vessel walls for a very over simplified explanation. )

[jackrussell in reply to KellyInTexas]

Thankyou for your reply, I will get in touch with my consultant tomorrow ( hopefully )

[KellyInTexas in reply to jackrussell]

Very good- hopefully your consultant will tell you something very interesting and encouraging. Maybe just some steroids for swelling will resolve your personal Bose system!

[DazVin]

I have GPA and almost deaf now, I do have hearing aids that help. When I was very ill I heard all sorts but the main thing I do remember was a contant electronic tune in my head that was kinda like SuperMario at 100mph! Since becoming deaf I very ofter get a high pitched noise mainly in my worst ear (tinitus), this mainly occurs when I am more tired though and I've learned just to live with it.

[Tbrz]

Oh I feel for you, it sounds like tinnitus to me - but I am not a doctor. It just sounds very similar to my own issues. I have GPA, which was diagnosed in 2016 after 18 months of serious sinus, hearing loss, bleeding ears - a result of this late diagnosis is I have been left with very bad tinnitus. Sometimes it’s so loud that my head feels it is vibrating and will wake me up. Unfortunately the consultant feels it is something I will have to live with, which I admit is hard at times as I have constant loud noise in my head. However, mine was quite an extreme case and was not treated properly for a long time so I have a lot of damage, so I hope for you that this is a temporary condition. Best wishes.

[jackrussell in reply to Tbrz]

Thankyou for your reply, I am hoping to contact my consultant today. ,as this is the first time that it has happened I hope he may be able to offer some help, I am now hearing the same tune over and over again ,and it’s not at all pleasant , and I-was woken up around 3am this morning with the same tune,difficult then to get back of to sleep.

[DaveCop]

Prior to this ailment I suffered with mild tinnitus, I had my hearing tested and was supplied with two earpieces that transmit white noise, this works wonders. Since the Vasculitis reared it's ugly head I have an earpiece in my right ear most nights as this is the worst time for me. When I'm pottering around at home I like to have a radio playing in the background, the trick is to try and avoid concentrating on the ringing/hissing.

[jackrussell in reply to DaveCop]

Thankyou for your reply ,and it is helpful to know that there is some way to at least tolerate the continual noise.I can see how having a more acceptable noise in the back ground would be helpful, although I,m finding it difficult to avoid concentrating on the noise ( which has now become music ). Since this has happened I have been given a further course of steroids and I am hoping this will give some further relief , as usual with this awful illness it’s a case of carry on and take each day as it comes. Thankyou for your time .