Head noise/tinnitus???

[Esperanza]

I was wondering how everyone copes with head noise/tinnitus. 

I didn't have any significant tinnitus (slight high pitched noise in that ear only occasionally noticed) before I had my sudden hearing loss and now I have a constant wooshy roar which is affecting my getting back to some normality while I wait and watch. 

I keep being advised that tinnitus is an 'emotional' noise or rather that emotions can affect it but then the Dr's also say that my brain has to adjust to the heaing loss and re-wire itself.  So I am a bit confused? 
Mine doesn't noticably change throughout the day - it just is...  Actually it is slighly worse when I first get up and I wondered if that had something to do with blood flow but I have been told no...   
There does seem to be a blanket theory to tinnitus but is it really the same if you have AN (and hearing loss)??
Do we all suffer from a wooshy white noise  after hearing loss anyway  - I have read that some people find it stops and the feeling of pressure goes after surgery??
How can I realistically make this better now so I can get back to a bit of normal???
Still not sleeping well either - I can get off to sleep but I keep waking up!
It is hard to stay positive when trying  to cope with this without seeing an end to it...

Thanks.

[Charlotte Lady]

Hmmm... dealing with "that noise". . .   Every person is different.  For me, I "embrace" it.  Through the years, I've had several head colds during which i've lost all hearing on one side.  I hated that empty feeling, like half of my head was gone because I had NO auditory input on one side.  So I"m kind of relieved I have my little ringing going on.   This doesn't mean I enjoy it.  not in the least.  It took a long time of thinking what I could have ended up (bad things) with compared to what I got. 

I have a fairly constant whistling/ringing which varies in volume depending upon the sounds around me.  I just have assumed it represents several still functioning bundles of nerves reacting to the noises around.  For example, at night I can "hear" my better half snoring in direct changes in the volume.   But it never sounds like snoring. 

I'm also learning that when the noise increases without cause, I'm probably going to have problems with balance.  I haven't figured that part out but it seems to be a truism for me.   When I have periods of louder than normal ringing, I also have problems with balance. 

I'm not sure about the emotional part.  I"ve not heard that before...even with my good ear.   Emotions do dictate how you react to it.   Like a dripping faucet, if you let it get into your awareness too much, it'll drive you nuts.  If you push it away (and that does take effort), eventually it because a background noise, not a foreground noise. 

I hope all this makes sense and is helpful.  Changing your thinking isn't easy.  It took me close to eight months to accept the changes. 

Oh and the change when you get up might not be blood flow but positional.  You've been lying down and now you're upright.  Just a thought.  I don't know if that happens to me; I"ve never noticed.

I never had any fullness pre op.  My balance improved significantly after surgery.  It's still not perfect but I can stand up from bending over and not go staggering backwards.  Things are definitely better for me after surgery. 

Donna     

[Jim Scott]

Hi, Esperanza:

I'm not sure if there is much you can do about your tinnitus other than to learn coping mechanisms, as most of us do, eventually. The condition does not simply disappear, there is no permanent, effective treatment I'm aware of and it seems to be very prevalent with AN patients, before and after surgery and/or radiation.  Mine has been a part of my life for a long time but it isn't overbearing in intensity and frankly, I long ago absorbed the condition into my psyche, as it were, and barely notice it anymore.  That might be dismissed by some as a simplistic 'mind over matter' approach but it works pretty well for me.  Yes, I have tinnitus but it isn't too bad and I refuse to let it bother me much or become some huge distraction in my life. 

I realize that kind of accommodation with this condition may not be exactly what you hoped to read, Esperanza, but it's a response based on my experience and so, the best I can offer.  I doubt there are any 'magic bullets' to 'fix' tinnitus.  If there are, I'll be eager to learn about them. 

Jim

[Boppie]

Esperanza, I agree completely with Jim.  Some things we just "go with".  Worse things can happen. 

The tinnitus fixer will make lots of money if his pill doesn't create a worse problem of its own.

Charlotte Lady hits on some ideas that we might learn from.  Maybe there is a purpose for tinnitus.

[HCSTARWIND]

Hi Esperanza

When I was first diagnosied with AN, my first symptom was deafening ringing in my ear not the hearing loss. I also have worked in a Neonatal Intensive Care where for 19 years have been subjected to constant alarms from monitoring equipment so it made it worse when I would go home at night. It never stops and sometimes is so loud that I experience balance issues at that time. How have I coped? Well first of all , I excepted this annoyance over time. Months and months. I found using a fan at night to sleep does mask the noise. Meditation and prayer. When I have a stressful day in the unit , I resort to a med called Serax 15mg. It is use to relax  and therefore , I sleep for a good 4 hour stretch. Also I found hydrating myself has helped me alot. Yes, there are times I have cried and screamed and said, " would you please give me a break , even for 5 min." You will learn your own coping mechanisms. This is all knew for you. Take care and stay  posted here. Helen

[GM]

For me I approach tinnitus like..."kids that are playing in the next room"...there there but you tune them out...if you know what I mean.  This works the best for me....

Gary

[Boppie]

Gary, I like your approach.   I don't acknowledge it.  I fegeddabatit, we donmenshunit.  And like the grandson's owee, we ignore it.

[JeWeL41]

Esperenza, here are some techniques I tried at the very beginning. Wear an iPOD or walkman in the effected ear but 'tuned out' so it is just white noise. My audiologist told me that the brain has to re-train to realise that the tinnitus is not an external noise and it can do this if a true external noise is coming in. I did this a lot in the three months before I got my hearing aid and it was comforting and it did help. Hearing aids are another thing, obviously as I have been diagnosed with SSHL the focus has been only on my hearing loss so I have a hearing aid and in the beginning it masked the tinnitus really well (as you know it does not any more) but my friend with Menieres has had a hearing aid for 21 years and her tinnitus is well masked by it. This may sound odd but if I get too hot at night the tinnitus is louder! so I sleep with the window open and then if I lie on the effected ear I can hear distant traffic noises which distract me from the tinnitus, rain is good too!

I think the strategies really are masking with other noise or devices and positive thoughts. Incidentally, I have not noticed anything that specifically makes the tinnitus worse and I work in a noisy school environment. I know you have AN and not SSHL but still think it is very early days and your brain is adjusting and you WILL get some improvement. I was off of work for three months when this happened to me because I was so disorientated and my head was full of all sorts of weird noises - I couldn't travel in my husbands car because the noise of the tyres on the tarmac was like a pneumatic drill , I couldn't go into supermarkets because of the noise of the freezers and air conditioning/heating system which drowned everything else out- of course noone else heard this and I don't hear it now either.

Can I ask you, how can your ENT know that you had a bleed to cause your sudden hearing loss, did this show on your MRI?

take care x

[LADavid]

Hi Esperanza
I've had tinnitus for 23 years.  I tried every new treatment that came along -- for the first 10 or so years.  Then I started to look at it as a part of me.   Other than the hearing loss that accompanied it, I really don't notice it any more.  The whistling is always there but unless someone brings attention to it, I don't pay any attention to it.  I can tell you that smoking and drinking increases the volume of the whistle -- I quit smoking 8 years ago.  I also started recognizing fellow suffers because of the slight head turn to listen -- to know someone else with it seems to help cope -- it helps to share experiences.  I've also heard that white noise does mask the sound at night.  Best wishes.
David

[danijake]

When I "hear" the whooshing noise, I just imagine I'm at the beach with a big seashell to my ear and try to relax. Of course it is a lot nerve wracking when you're trying to have a conversation or watch TV.

[Esperanza]

Many thanks for your kind words...

I know it is early days for me and that positive thinking is the way to go, I am taking on board your suggestions - I know I will get there eventually!

J - I think the specialist thought it was a blood vessel because of the suddeness of the symptoms - from very slight tinnitus and slight fullness/pressure to a sudden vertigo attack and profound ssd within a couple of days - would be due to a more sudden swelling?  I can't see anything on the MRI personally but then what do I know! 
The thing is  - when I went for the appointment I was so geared up to talk about surgery (my local ENT man suggested that they would say to remove it..) that it threw me a bit when he said wait and watch and 'get on with your life for now'....

I AM trying to get on with my life but the SSD (and tinnitus) are playing havoc for now...   Went back to my pre-AN diagnosis life today and this pm had a noisy group situation to contend with  - couldn't really make out what anyone was saying (even those right in front of me) what a nightmare - is this something that will get a bit better???   I really miss hearing with both ears....    If I could do nothing else I would wish for some of that back...


Thanks all again..

[JeWeL41]

Hi Esperenza - you are brave trying to get back to normal so soon - well done. But give yourself some time, be kind to yourself. You say your SSD was over a couple of days, I went to bed with no problems and woke up with it! You have an AN so you know it is linked but I'm sure I'm right to say that without looking in your inner auditory canal the specialist can't say exactly what caused it wether it be a bleed or pressure from the AN. This is why so many of us are diagnosed with IDIOPATHIC sshl - they just don't know. Incidentally, I've got my referral and Mr Wareing in London has been in touch so I'm just waiting for the actual appointment date. Keep busy, keep smiling if you can and keep in touch! x

[Esperanza]

Today was better but I have an awful head and that screwdriver in the ear feeling again on the AN side, I do tend to feel I want shot of this thing....

I am so pleased you will be seen (hopefully soon!) by someone who will, agan hopefully!, give you a proper idea as to why you suffering the way you are...    of all the things that can go wrong with the body though, the ears seem to be an area that i now realise they know so little and can do so little about..... (or am I being infair?? ).

[JeWeL41]

No, that seems a very fair assessment and I suppose its because in order to understand the problem they really need to go in and have a look and because it is all so small and delicate this would invariably do more harm than good so they don't. The other huge issue is that deafness and tinnitus is completely invisible to everyone but the sufferer. I've lost count of the times work colleagues have made comments like 'oh are you still having problems' or 'are you still deaf', even my husband forgets and we can't constantly remind them or have it tattoed on our foreheads so to others around us its not much of an issue. If we had woken up suddenly blind rather than deaf I suspect a lot more notice would have been taken! This 'screwdriver' sensation you have- does it hurt? Do you remember my 'fullness' started off feeling like a tennis ball and has gradually diminished to a gobstopper? Hopefully yours will settle to a more bearable level too.

I got a new hearing aid today and it's been turned up but the tinnitus is still wooshing over it. On the bright side, only four more days of school and then a wonderful week off x

[danijake]

The head noise is starting to drive me nutt loud. It's  really loud. There's nothing I can do about it, though. The AN ear is very sore and achy. Could it be an infection?