Hi everyone, I’m new here and very pleased I have found this forum.
I have had tinnitus for about 20 years but was able to cope with it, now it is so bad it’s more of a roar than ringing, I have seen endless neurologists and had several scans which have all been clear, which I am relieved about as had a brain haemorrhage in 1999, all the consultants say it is nothing to do with the aneurysm but they cannot seem to give me anything to cope with it, I am also lightheaded and have daily migraines, I am on Betahistine 16mg 3 times a day but have they have had no effect, I hardly sleep and now quite depressed, my Doctors are trying their best but don’t really know what to do, just wondered if anyone else has been successful in finding something that relieves the tinnitus.
Many thanks.
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Yoga62
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Hello Yoga62 I was in your place this time last year and yes mine is more like a roaring , humming fan oven continuously. BUT my brain is and has adjusted accordingly . Some days are worse than others and I seem to tire quickly. You may have to just “ ride it out” as I’m doing. I have found this site very helpful and if you look back on previous messages from everyone you will find some very useful information. SO. - plenty of walks through rustling trees and the wind , bird song , sound of the sea . Just keep going. The more you relax the better it should be .
Hey !!!! You know more than me after 20 years. 😂 😂. Don’t let the tinnitus win. , take care xxxx
Hi rabbits65, thank you for the advice, I don’t know why I am suddenly more aware of the roaring but it’s definitely got worse, stress plays a big part and having no sleep doesn’t help, I live next to a busy main road which is very noisy and doesn’t let up so going for walks helps,Have already read other posts and it really helps to know I am not alone.
We are actually in process of looking to move, my husband has just retired and the house is too big now children have grown up, the idea of the upheaval of moving fills me with dread but it will be worth it.
Persevere with the idea, move to a quieter road, plus the fact it will give you something more to focus on , because tinnitus is worse the more you dwell on it. I know moving is an upheaval but it’s not too bad , you can pack boxes and also get some help packing too .
Thank you, yes I am sure we will be moving, it’s a very busy A14 which doesn't let up , constant day and night, as I just said to msspinner, I am now worried about not being able to appreciate silence as all I can hear is roaring but I must stay positive.Thank you for your support
Just to add tonight, my tinnitus always seems worse in the late evening , like as you say “ a roar”. It’s 10.30 pm . I live on my own and the roar is louder than the TV . Look your not alone with this . I get scared in the evening on my own too. I am much better in the earlier day. Goodnight from me, Penny
Hi, yes we are thinking of moving probably next year now but now I am worried because when I sat in my sons garden the other day my husband said it’s so peaceful here perhaps we should also move to the countryside, I didn’t like to tell him all I can hear is a roar, it’s like I almost need loud noise to drown out my own loud noise in my ears! It’s sad to think I will never know what silence is like again,Sorry don’t mean to be so negative when you are all so positive.
Hi Yoga62. Welcome. This can sometimes be the way with tinnitus. Have you had a hearing test lately? It might be worth a go. My T got louder as my hearing got worse. Hearing aids are of some benefit. Otherwise it's all about coping strategies - as rabbit says. Sound therapy, relaxation therapy, CBT etc. There's lots of info on the BTA website. It's trial & error really to find out what works for you. All the best 🙂
Hi, yes I have had hearing test last year and I always tell them my tinnitus is so loud I am not sure if I will be able to tell the difference between bleeps on test and tinnitus, it always comes back as ok, like you my hearing has got a lot worse so will book to have another one.I find mindfulness a great help but once again the ringing is so loud I can’t relax and end up getting upset, I think what rabbit said about walking where there is background noise is a good idea , so glad I have found this forum with lovely people to help me.
Yes. I have the same problem with hearing tests but no one seems to mind. It is upsetting when T gets louder all of a sudden and it can be very difficult to relax. This acute phase usually eases over time as you get used to the new volume. Please take heart. You won't always feel the way you do now. Things will get better.
You’ve been given betahistine, Yoga62, and this is NOT now recommended in the UK to be given for tinnitus.Please explore the website of the British tinnitus Association for hints and tips on how to cope.
As you live in the UK you’ll be aware of National Institute for Clinical Excellence (NICE). Go to their website and insert Tinnitus to the search box. The information shown is based on research and input from the charity BTA. As this guidance was published just as Covid started your GP probably isn’t aware of this guidance.
Thank you for that very important info on Betahistine, will definitely be contacting my Doctor about it. I was prescribed it originally for the fullness in my ears and lightheadness as they said it would ease the ringing but it hasn’t, I know there is no magic cure but am going to try other coping strategies like relaxation and mindfulness, this forum is the best thing I have ever come across, thank you so much for your support.
Hi. I was in the same place as you a couple of weeks ago. I thought it was the end of the world and I would never sleep properly again. I had mirtazapine for two weeks to help me sleep. It also helped to alleviate the perception of tinnitus. It managed to break the bad sleeping cycle and I can now sleep. Not perfectly, but a lot better. I stopped the mirtazapine as it made me very hungry and I didn't like the grog feeling during the day. But it did help to cope. Other people here have used other antidepressants. I hope you find something that helps.
Glad to hear you are able to sleep better, I might suggest mirtazapine to my Doctor, they seem to prescribe whatever I ask for which is a little worrying as I requested Betahistine which I tried last year and gave up on because it didn’t do anything so I thought I would give it another go but Happy Rosie has informed me it should not be used if you have tinnitus, I don’t think my Doctor knows what to do, in fact last time I saw her she actually said “ What would you like me to do. “ came out of there crying! Thank you for your kind support
When you’re seeing /speaking to your doctor, tell them you’ve come across the latest guidance from NICE and that, as they might have missed it because of Covid, they might like like to have a look!
Hi, in response to letting my Doctor know about Betahistine not being recommended on the Nice website for Tinnitus patients ( which I found very interesting, so thank you ) they were adamant that there is nothing there to say so and it wouldn’t have any affect on tinnitus at all! I mentioned it to the pharmacist who prescribed it to me for dizziness ( this is how my doctors are working now) he is interested in it and going to look into it further as like you mentioned, it could have been missed as it was published at beginning of lockdown, I await his phone call and will let you know,.
The Doctor has now told me not to take anymore Betahistine if my dizziness has improved , just wondering if he said that to cover himself.
Hi Yoga62 Strange that the one thing I crave for (silence) make my Tinnitus worse. I live next to a busy road and find the ambient sounds help my brain concentrate on them instead of the Tinnitus, also my new hearing aids help.
Yes it’s strange you should say that because I sat in my sons garden the other day and my husband said it’s so peaceful here we should move into the countryside but all I could hear was a roar coming from my ears!Now I’m worried that moving will be the wrong thing, it’s almost like the roar from the traffic is in my ears, it’s very sad when I can’t hear the silence, don’t think I ever will.
Hi Yoga62, sorry things have gotten worse. Hopefully you feel like you have had all the adequate tests, if you are in the UK it may be worth checking the Tinnitus NICE guidelines to ensure you have had all the pertinent tests nice.org.uk/guidance/ng155.
Here are some of the things I have posted before on how I handled my T in regards to sleep, hopefully may help...
• 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. 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.
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 behavioral 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.
Thank you so very much for sharing such a lot of very useful information, I haven’t even heard of a sound generator app, that sounds like just what I need, I have tried Headspace where there is a mindfulness body scan but I just kept focussing on the T, so gave up, I need to research the BTA for more help in sleeping and may invest in the sound pillow, I would love to get to the place you mentioned you go when you sleep to the new sound of silence, that sounds like heaven.I hadn’t thought about moving the alarm clock as I always look at it and know I am never going to sleep, so that’s the first thing I am going to do tonight.
Thank you again for your support and I am glad your sleep patterns have improved.
headspace is a great meditation app but I found the sound generator apps a god send when I first had T, it takes a little while to get used to them but I found it a great part of helping me cope.
Another great place to learn distraction/behavioral techniques as well as getting empathetic support are the BTA support groups tinnitus.org.uk/online-supp....
Hope some of the above helps
Hi yoga62
If interested please see my Post from about a year ago where I describe how I got rid of the T I had for 40 years, just by redefining what T actually is
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