New to tinnitus: any advice?

[CHswim471]

I'm on the start of a horrid journey, trying to work out how to live with tinnitus. It's the interruption to sleeping that really worries me; I'm feeling a bit panicky about getting dementia if I don't get enough sleep. I'm using a sound app I've downloaded which has been helping, but the ringing in my right ear in particular is difficult to mask. I would appreciate any advice or reassurance. Also, do people think it's worth going to an audiologist privately.

[Hidden]

Hi - I'm Sarah and also new to Tinnitus, 9 weeks in. How long have you had Tinnitus for? I think it totally depends on your circumstances as to whether you should see an audiologist privately. Have you seen someone in ENT? Personally speaking I went private for an initial ENT consultation to rule out any structural issue and to diagnose the Tinnitus, (6 month wait list on NHS - was seen privately within a week) and then saw an audiologist privately for hearing test. The hearing test step is often one that can determine next best action - i.e. hearing aids etc. So I would always encourage anyone to take control of their own appointments if they have the resources to do so, as unfortunately NHS can be a long wait. From my limited experience, you do get used to the idea of living with Tinnitus rather than trying to fight it and everyone, literally everyone, tells me it will get easier. Sending you best wishes.

[CHswim471 in reply to Hidden]

Hi Sarah, gosh, you are so much younger than I am! Thank you for your helpful and reassuring advice. I am just about to make an appointment with a private audiologist.

[Hidden in reply to CHswim471]

Tinnitus does not discriminate I hope it works out for you; do go back to your GP with any updates /test results etc, as they can then refer you back in to NHS care afterwards if necessary. All the best!

[doglover1973]

Hi CHswim471 Lovely photo 🙂 One of my sisters is a cold water swimmer and she says it's very good for you. I've not yet taken a dip. Whether or not to go private is a tricky one. Bear in mind private audiologists sell hearing aids whereas the NHS give them out for free. This doesn't mean one service is better or worse than the other. Just be careful what you buy. HA's help if you have hearing loss but they're not a cure all.

[CHswim471 in reply to doglover1973]

Hi Doglover1973, thank you so much for getting back be to me, and for the compliment re my photo! (To be fair the pool I swim in - in the photo - is heated ☺️.) I've booked an appointment with a private audiologist but will be very hesitant about buying anything from them at this stage. I think I'd rather go back to Boots the chemist who have been testing my hearing for a while now for free; but it's quite a cursory examination.

[doglover1973 in reply to CHswim471]

Haha . Very sensible to swim in a heated pool! It's a good idea to have a thorough hearing test if possible. You can always take the results back to your GP and ask for a referral - as Hidden says. It may be you have uneven hearing loss if your tinnitus is louder on one side. This is the case for me. On the other hand it may not be. Always best to check it out. Sleep can be disrupted in the early days but - as you get used to the sound(s) - hopefully you'll sleep better. .

[Hylda2]

I wear NHS aids which enable me to play white noise or music into my left ear. The audiologist told me they were £3k the same as private ones so go careful. I am also waiting for a CT scan as I have pulsatile tinnitus too so they are just doing a brain scan to make sure all ok.

[CHswim471]

Thank you Hylda2. I'm going to consider all my options!

[Hidden]

Hi Sarah

that's a great photo- can't beat a heated pool! I agree with what has been said...re costs and quality of hearing aids being good on NHS.

I went to the Hearing Clinic for the detailed tests- hearing with background noise and speech recognition test along with traditional test.

It was free though they tried to sell me pricey aids afterwards. I got upgraded Danalogic hearing aids last summer from NHS (I've high toned sensorineural hearing loss) and sticking with them.

Good luck with the t - mine's is cyclical and I try to tune out from it - though that is easier at some points than others. Let us know how you get on. Lindsay x

[purenostalgia]

In my case CHswim I live on my own, my Tinnitus went from annoying to horrendous last March, for 2 nights I sat on the side of the bed finding it impossible to sleep(I take it this is the stage you are at?) I saw my local GP and told him I could not carry on any longer and wanted that put on my records. I was fast tracked to the ENT Dept at our local hospital(three weeks) I was now getting little or no sleep and my concentration was nill.

I am 78 years old and then had a hearing test the doctor at ENT told me for my age about 60% of my hearing was normal but the other about 40% of the high frequency sounds were poor.

I was sent to an Audiologist and asked it I would like to give hearing aides a try. I was so lucky to find an audiologist who himself suffered from Tinnitus. Like you sleep and bedtime was the worst time(and still is) he recommend that I try and help learn that amazing organ my brain to adapt to the situation.

He advised me to go to bed at the same time every night if possible after midnight, to have some sound in my bedroom either under the pillow or in the room.

After a few weeks it worked, I now still find bedtime like torture, I go to sleep within 30 mins and do not wake up until about 5/6pm.

Your body is an amazing piece of kit, with your help it will fight back against this terrible Tinnitus.

You are on the right track by joining this forum.

Sorry for being so long winded Take Care

Mike

[CHswim471 in reply to purenostalgia]

Mike, thank you! Your experience is so useful to know. Today my tinnitus is much quieter and I feel human again. You, and others, suggest really pushing their GP and I will do so as a last resort. The GP I spoke with also had tinnitus and she was really sympathetic and has given me something to try. Her experience made such a difference to how she listened to me. I am so glad you are coping better now. (I have already adopted a 'sleep hygiene' option and it seems to be helping.)Caroline

[rowanbovis]

Hi CH, I have had tinnitus for about 8 months now. There are foods which aggravate tinnitus - caffeine and salt being at the top of most lists, but I recently found an article which sited phenols as a culprit for some sufferers.theeardepot.com/tinnitus-gr...

I immediately cut beloved honey, garden peas and olives from my diet and the pitch of my tinnitus went higher and the volume decreased - more like fairy cicadas than shrieking hydraulics.

I have found that overdoing Magnesium makes it worse. Do you know what has caused your tinnitus? I ask because thyroid dysfunction has caused mine. I have intermittent bouts of hyperthyroid and am not on any medication but I was, I think the tinnitus would fade so if there's any chance you can pinpoint a treatable root cause, do address it.

My overriding obstacle is in believing that this racket is coming from inside my body and not from outside. Why does my body sound so much like the electronics of a manmade machine? I've gone down the EMF wormhole and stare sadly at the 5G mast 100m from my house. But it probably is my own body's 'music'.

Sometimes I can meditate on it.

Very best of luck.

[CHswim471 in reply to rowanbovis]

Hi 'Rowanbovis', I have roamed the internet and wondered about food and other medicines. I've an appointment next week and I will ask for a view from the audiologist. I have slightly high blood pressure, a B12 deficit and I am hypothyroid (if that's the correct term). However my suspicion is that slight deafness is the cause. I intend to gradually rule things in/out and will try anything I can think of to manage this. Meanwhile I hope you manage to stay on top of this problem and thank you so much for your advice.Caroline

[rowanbovis in reply to CHswim471]

Hi Caroline, high blood pressure has turned up in my internet trawlings for answers. Fish oils are supposed to help with that (though steer clear of cod liver oil re. overloading the liver - I use an expensive one from Nature's Best). Also regular excercise is good for high blood pressure. But thyroid dysfunction is a common cause of tinnitus. I have told my endo about this 😂😪

[CHswim471 in reply to rowanbovis]

Thanks for your further advice rowanbovis. I am off to do a bit of exercise.

[Tanney]

have you been told why you have tinnitus? It can be caused by many things such as allergies, diet, stress/anxiety, circulation problems, inner ear disease such as Meniere's Disease, etc. I'm sure the stress you feel right now is aggravating the tinnitus and making it worse. I have several suggestions:1. definitely see both an allergist and ear/nose/throat doctor so they can try to determine cause. Allergies could be your cause. ENT doctor will help with that. I suggest you see the ENT first if they are available.

2. sedatives such as Ativan works quite well in reducing stress (you mentioned that you are panicky) and tinnitus. I take 0.5mg Ativan when my tinnitus is particularly loud. Put the pill under your tongue and it will work within 40 minutes.

3. try Lipoflavonoids. You can buy this on-line or at your pharmacy.

Good Luck!!

[CHswim471]

Hi Tanney. Thank you so much for your tips for drugs. I will discuss with my GP. Today I feel much more positive as I managed to sleep and the sound is much less today. IAnd it occurred to me that stressing myself out was not helping!)

[oldskir]

Most private audiologists seem to say that a hearing test with them is "without obligation".Some seem to offer a kind of free trial on hearing aids, or more usually something like a 30 day money back offer.

I only recently read that most of the big name national companies are owned or have a connection with certain specific hearing aid manufacturers. So they aren't able to offer a full choice across the whole range of aids. Boots, for example, I think are part of the same company as Phonak, Hidden Hearing are linked to Oticon.

So you will probably get a better choice across the full range of hearing aids available by going to a local independent audiologist. These independents got the highest satisfaction rating in the last Which magazine survey.

I'd be interested to hear other people's thoughts on this.

[CHswim471 in reply to oldskir]

Hi 'Oldskir'. I will bear in mind what you say. I'm seeing a private audiologist next week. Thank you for your suggestions.Caroline

[LisV]

I've suffered from tinnitus for around 14 years, have found a sound generator and sound pillow helpful when trying to relax or sleeping, however, today my tinnitus has been especially loud, I'm wearing hearing aids that include a very subtle sound generator to mask the tinnitus, though today it hasn't! when I'm absorbed in an activity (I practise music and art) I don't hear it. i think the pandemic and now a war too close for comfort has stressed me out. i purchased my hearing aids from the Tinnitus Clinic in Harley Street. they cost £3,000, and are still working well after 5 years, private hearing aids seem to be always around that price. on the whole, I'm managing the tinnitus quite well.

[surreycccfan]

Hi CHswim471, welcome to the forum. This initial 'phase' when we first get T can be so upsetting, confusing, etc. and when we can't sleep it can sometimes cause us to be anxious, which then makes us focus more on our T which then makes us more anxious, etc.

When I got my T I initially saw an NHS audiologist and then I went private for ENT. As the wait times for audiology was so long (you can check your local trust here myplannedcare.nhs.uk/ ), luckily I had health insurance.

In regards to sleep, like you I really struggled. Below is something I have posted before on what I did. I can now say I can sleep well and in fact I am managing my T so well I am back to sleeping with ear plugs so the only sound I can hear is my T (I am at point in my management journey that my T no longer invokes a flight/flight emotional reaction, I habituate and can live well with my T).

• I used a sound generator app (I used ReSound Relief but plenty of others out there). I mixed sounds that (1) I found pleasant and (2) mapped well to my T. Audiologists tell us to map the volume of the sound to just below the volume of your T. As time went on and I felt more 'positive' towards my T I slowly reduced volume until I no longer needed the sound generator

• I tried to use positive reinforcement in relation to the sound from the generator app. The sound I had chosen was beach, waves, and rain, when I would go to sleep, I would listen to the sound and think of lovely holidays I have had walking on the beach. As T creates such a negative emotional reaction, these types of thoughts allowed me to calm down and think about something other than my T

• When I was lying in bed if I felt stressed and my mind was focused on my T I would follow a mindfulness body scan and/or progressive muscle relaxation. I found this very calming and did take my mind off my T

• I used BTA support group to help me learn more about T and techniques to move towards living well with T. As I learnt more and managed to reduce the negative emotional reaction to my T I would even say 'hello' to my T when I first settled down to sleep. The reason I did this is I found when I was stressed by my T it was always at the forefront of my mind so I found that if I said hello to it then (1) I had acknowledged it and my mind could move on to something else (2) by saying hello I was reducing my fight/flight reaction to it and this helped me to 'normalise' it for me.

• I tried to follow a good sleep hygiene pattern (maintain a regular sleep routine, avoid daytime naps, don't watch TV or use the computer in bed, no caffeine after 18:00 and as I am a clock watcher I put the alarm clock out of sight so I wasn’t constantly looking at it.

• Exercise was also important as this allowed me to be physically tired

It took me quite a while to get into a better sleep pattern but as I said I can now sleep with my 'new sound of silence'. The BTA has some excellent resources on sleep tinnitus.org.uk/tinnitus-an... and has good links to products such as sound pillows, headbands, etc. In the above link the vicious cycle graphic really highlights how the fight/flight reaction to our T inhibits our sleep. I found by practicing other distraction and behavioural techniques in the day I slowly shifted how I thought about my T (I saw it as less of a threat which took its power away) and in combination with the things I did at night I slowly got back to normal sleep patterns.

I hope the above may help in some small way. Take care

[CHswim471 in reply to surreycccfan]

Hi 'surreycccfan'. Thank you so much for your welcome and for your detailed and enormously helpful advice. I think I've already moved a long way towards habituation of the tinnitus, just by following a lot of good advice from people like yourself, the British Tinnitus Assoc. and Which magazine (for hearing aid advice). I've also linked in with a site called Stuffthatworks, which I think might be based in the US, and I'm shocked by the amount of different drugs people mention on that site that they seem to be trying. Thank goodness for the NHS!I've seen a private audiologist and will probably buy hearing aids there, although I now understand that a lot of support is available on the NHS. (It's the wait time that concerns me with the NHS.) The private audiologist also struck me as very knowledgeable and had good reviews. I have sent her a lot of questions though (thanks Which magazine).

Most of the time in the day I don't notice the T., except when I am doing some quiet work and then I listen to music or some ambient sounds that 'drown' the T. Sometimes I can hear nothing at all, but wonder if this is simply that I am busy with something else. Now I have a ringing in my ears - noisier on the right than the left, but I will go for a walk and forget about it. I'm physically quite active and I think that's going to be a great help.

My greatest fear was around sleeping. What I've found is that, by following good sleep hygiene practices such as those you suggest, I generally sleep very well and, occasionally, do not need any background sound (the exception is if I've drunk some alcohol, but that's no different from before T.). I am contemplating buying one of those sound pillows as being easier to manage than my iPhone stuck under the pillow at night (thank goodness my husband can sleep whatever the noise around him: 'ah, rain' he says as he falls asleep). Do you think they are worth it?

I can see that stress makes things worse (and there is a lot to think about in the world at present!) and I stop scrolling, watching TV etc at least 30 minutes before going to bed. I also don't get into bed if I don't feel tired.

Unlike you I haven't 'made friends' with my T. but I am trying my best to accommodate it in my life.

Thanks once more for all your helpful advice.

Caroline

[Persevere99]

Hi Caroline

Sorry to hear you’re going through a rough patch.

I ‘had T’ for many years, had to take benzos to sleep.

Then, 5 years ago, I finally realised that if you concentrate entirely on anything bad, T for example, for sure it’ll seem like the end of the world.

So, I started thinking about others and the far worse problems they had to face.

And, slowly, the rating I formerly gave my T fell from 50 to Zero and No benzos now for many years.

Please see my own T post for the detail.

All the best!

Persevere99

[DianaSGE2719]

Hello Caroline - I just wanted to say how helpful it was for me to be directed to your post by one of your responders. So much advice and wisdom in the thread. I hope your journey has become easier lately. I'm at the start of mine, and the onset of several tinnitus related symptoms at once is a big body blow (well, almost literally!). I also swim in a beautiful heated outdoor pool, a little like the one in your photo, and I've tried to keep that going even though other activities have decreased. It's such a wonderful feeling to be in the water in the open air. A peaceful 2024 to you and everyone else here.Di