Hello!! I have just joined after developing ti... - Tinnitus UK

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Hello!! I have just joined after developing tinnitus

Ross81 profile image
30 Replies

Hi I’m Ross I’m a gardener and about 6 weeks ago I developed tinnitus using loud machines at work along with loud music at work and weekends.

I’m not going to lie this is the toughest test I’ve personally faced in my 39 years of life. I’m averaging 4 hours sleep a night and I’m someone who loves sleep and peace and quiet, it’s very stressful and draining.

In my first fortnight, I contacted the BTA and spoke to Shakeela who gave me a massive help by listening to my story and sharing her knowledge and advice. She was fantastic!

Although I’m only 6 weeks in and at times feel like giving up, the advice and information I’ve gathered from BTA has been priceless and it’s nice knowing I’m not alone. (Thank you to Jessica as well)

I have spent my time researching this affliction, therapies and treatments but it’s so complicated and different for every sufferer it’s a lot to take in. Hopefully we can share experiences together; I’m trying different things and hope to report my findings here.

Love and healing to all

Ross

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Ross81
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30 Replies
GERTRUDEANDDAISY profile image
GERTRUDEANDDAISY

I know it’s difficult, I’ve been there with Tinnitus. I do think with time things will feel better. Apart from some small changes (introducing ear plugs into life and not listening to loud music) I was able to enjoy life like before. My journey has somewhat changed lately due to developing a different type of Tinnitus and I am going through the process of getting used to my new journey but I know these things can be done xo

Ross81 profile image
Ross81 in reply to GERTRUDEANDDAISY

Hi thanks for the reply!

I’m still early stages so I agree it will get better in time, it’s what I keep telling myself at 3am with no one to talk to!! I hope your new type of tinnitus is more mild and eventually disappears. What made it change? And did you do anything to make it change??

Ross

GERTRUDEANDDAISY profile image
GERTRUDEANDDAISY in reply to Ross81

In all honesty, I have no idea. I’m not even sure how common it is to have all 3 types as I haven’t met anyone with them all yet.

SB7516 profile image
SB7516

Hi Ross,

Like you I’m all new to this (3 months in). I’ve recently become a member of the tinnitus association as I too am facing the biggest health challenge yet. It’s great to hear others stories and get reassurance from fellow sufferers on this forum and know we are not alone. Good luck with your journey x

Ross81 profile image
Ross81 in reply to SB7516

Hi SB,

Early stages I was told is pretty acute and mobile so it’s going to be tough but you can do it, we all can get through this.

I’ve spent the last 2 months finding out everything I can about therapy and treatments and about the condition itself. It’s difficult as everyone’s T is so different and what might work for one, may not work for somebody else but there is always hope!

Thanks for the reply

Ross

T-shirts profile image
T-shirts

Hi Ross,

Yes its very distressing at first, and have lots of sympathy for you, it's a horrible condition, have you been to see a hearing therapist, they are a great help, I've had it for over 20 yrs, and now I'm wearing hearing aids, they do help, I haven't lost my hearing, only a small dip in my hearing, Audiology has given them to me, I do have bad times, especially if I'm stressed, my ears are blocked at the moment, trying everything to get some relief, have you seen your Doctor for help, ask to be sent to hearing therapist, and Audiology, they will be able to help you, they will also be able to give you maskers, with white noise on, they are what I use at night, just on my pillow to help me sleep, or look on Amazon for white noise machine, other nice noises on them, help you fall asleep at night, also, I'm on Amiltriptyline, helps me sleep, wishing you all the luck, take care,

Anne

Ross81 profile image
Ross81 in reply to T-shirts

Hello Anne I’m so sorry you’ve lived with it for so long!

I have my first ENT visit next week, I’ve been waiting a month but already know I have tinnitus I just don’t know how bad the damage is yet. Because it’s taken so long to get my diagnosis I’ve had to research what helps myself as mine is pretty much 24/7 incredibly loud and distressing. I needed to do something and the people at BTA were great pointing me in the right direction and I’ve found a lot of useful info about treatments to lessen the noise etc.

I have a small indoor waterfall from amazon which helps me sleep at night as well as two white noise machines. You’re right they’re great but as soon as I move away from them the buzzing comes back immediately and pretty intense so it’s hard to find a balance between total masking and partial.

Thanks for the medicine tip, I’ve been sleeping maximum 4 hours at a time usually just 3 hours for the past 6 weeks and it’s draining!!

Thank you for the reply

Ross

T-shirts profile image
T-shirts in reply to Ross81

Hi Ross,

Yes is very distressing, oh, waterfall machine from Amazon, that sounds nice, I'll take a look at that one, yes Amiltriptyline should help, but all depends on your Doctor, he/she might know something different, good luck to you, white noise very good , I was seeing a hearing therapist for a long time, but can't go now as too many others waiting for help, wishing you all the best,

Anne

catman68 profile image
catman68

Hi Ross

Really sorry to hear that you have been afflicted with tinnitus, there is no cure but there are aids which can help.

I currently suffer from severe T 24/7 and at times it is unbearable, sleep can be a problem I use sound oasis sound machine with pillow speakers, it helps.

Living with T is difficult and you will need lots of resolve and determination, also family and friends need to be aware of what you are going through, so they can understand when you are not at your best

Hope this helps

Catman68

Ross81 profile image
Ross81 in reply to catman68

Hi catman thanks for your reply!

My T is on 24/7 as well and I find bedtime to be a nightmare much like yourself. Mines like a low constant buzz with an electrical element to it. It’s like having an electric toothbrush sellotaped to my head it’s nauseating but it has eased from the initial onset and not always dialled up to 11!!

I’ve tried explaining to my boss my girlfriend and family but as it’s an unseen condition it makes communicating what Im going through to others a lot harder! I already feel the tension with my girlfriend as she says I talk about it too much and am giving it too much attention. But then on the other hand I need to know what I’m dealing with and if it wasn’t for the apps and sound machines that manages to dull it or mask it if even for a short time, I would have gone crazy!!

And there is a cure out there I’m sure for all of us. Every tinnitus is unique and so every treatment has to be uniquely suited. I have been researching ‘cold therapy’ and am on my 4th day trying it. Essentially a small burst of cold shower to kind of kick start the immune system and mitochondria production. It may not be for everyone but the science is good in my opinion and anything is worth a shot! Research it sometime and we can compare notes lol

All the best

Ross

Audio1 profile image
Audio1 in reply to Ross81

Hi Ross

Very interested in your cold therapy. Please let me know if you have any success with it.

Dave

Ross81 profile image
Ross81 in reply to Audio1

Hi Dave

Yes I’ve been doing the cold therapy for only a week so a bit early to tell. The research on it is interesting and I advise you to check it out, there’s a few videos on YouTube

All the best

Ross

Audio1 profile image
Audio1 in reply to Ross81

Thanks Ross I will look it up and give it a try.

Please keep me posted on Your progress !

Best regards

Dave

bantams profile image
bantams

Hi Ross, Know what you are going through, I have been suffering from Tinnitus for about 5 months and I really struggled the first couple of months, even feeling at times was life worth living, but eventually I started to learn to live with it, by keeping busy to take my mind off it and spending a lot of time outside so you are hearing different noise.

I did buy hearing aids, but they did not help with my Tinnitus.

Anyhow keep your chin up and hopefully things improve. Alan

Ross81 profile image
Ross81 in reply to bantams

Hi Alan thank you for your reply and am sorry you are in pain as well!

You are so right about occupying your mind with things and being outside. I’m lucky I’m a gardener so am outside for most of the day, it’s bedtime I fear now as I know I won’t sleep! Only in blocks of 3-4hours. Its funny I almost fell asleep on a pile of leaves in somebody’s garden a few days ago coz so exhausted and it was nice not having my T full blast outside, the sound of the wind and birds chirping was a great mask.

Have you tried any other treatments or therapies to help? I’ve tried supplements the past 3 weeks to no avail but anything is worth a try to lessen it

Ross

Finnitus profile image
Finnitus

Read " The Lake Isle Of Innisfree " By WB Yeats.

Ross81 profile image
Ross81 in reply to Finnitus

Hi Finnitus thanks for the cryptic reply and reading tip! It will give me something to focus on in the wee hours I suppose!!

Love and healing

Ross

Finnitus profile image
Finnitus in reply to Ross81

Hello Ross, there is a great poem by Lord Tennyson " The Brook " I recommend it to all Tinnitarians as a means to sleeping. Learn it off and recite it in bed. If you go on youtube the poem was recorded in County Kerry Ireland by an actual brook. I recite every night before sleep, it works. I did hear once that what ever level your Tinnitus is at is for keeps, it does not increase. It may increase as a result of being exposed to noise or after wearing ear protection ie while working a chainsaw etc.

Coffee Tea Alcohol Chocolate after 7 pm is not a good practice as they stimulate the heart and thus increases the blood flow to the ear resulting in more sound.

Avoid centrally heated bedrooms for the same reason.

Should you need any more information on how I deal with it ask, but basically, what I have written above is sufficient to assist you.

One last thing, I am a vegetarian, I do know that there is a lot more energy required to break down a carnivorous diet and that occurs at night which will induce a higher pitch.

Going vegetarian certainly helped me in more that just my Tinnitus.

Ross81 profile image
Ross81 in reply to Finnitus

Hi Finni thanks so much for the pointers and I’ll definitely give the brook a go, I love the sound of water it’s what I play the most on my noise machines.

I gave up caffeine over 3 weeks ago as I heard it can exasperate the symptoms. I was always a big Coca Cola drinker but not anymore! I found the vibrational aspect of my tinnitus was so terrifying in the early days, felt my whole head was buzzing and I haven’t had it that bad since I ditched the Coke so that has improved but it’s still here 24/7. Any way to dial down the volume is great as mine is so loud it’s hard to concentrate or even speak when it’s full blast, it’s like a constant low frequency buzz but very loud almost like an electric generator. In fact before I even heard there were machines to mask tinnitus I had to stick my head in the airing cupboard as the water heater masked my T!! I just didn’t know what to do or what was happening to me it was scary and still is at times.

I’m guessing from your posts you’re a big poetry fan. I think that’s a great way of focusing the mind. I thought about writing about my tinnitus as a kind of therapy. I hate it so much I think it would be a release to but writings not my thing, I get hung up on words too much. I’d definitely title it ‘the song of Satan’ if I did write about my tinnitus haha!

Thanks again for the words of wisdom

Ross

Pixie56 profile image
Pixie56

Hi Ross

I have had Tinnitus for just over 12 months. Some days are better than others,but I have it 24/7, I also have trouble sleeping. I feel I want to escape but know it’s impossible.

It definitely is better outdoors with all the different sounds so a good long walk helps.

I suppose I’m learning to live with it now. I have seen an audiologist who was lovely and gave me a masking hearing aid plus pillow speakers, which I need to get an attachment for to play music from my phone, I sometimes listen to an audiobook which also helps.

Good luck with yours

Mary

Ross81 profile image
Ross81 in reply to Pixie56

Hi Mary thanks for your reply and I’m sorry you’re here too!

I’m 6 weeks in so am new to this world of insomnia and stress! I am a gardener so I’m lucky I spend most of the day outside, bedtime is not something I look forward to anymore. I have a couple of sound machines and apps that help and I find a fan on the bedroom floor is ideal for my low frequency buzz.

I have a bit of Gregorian chanting in the background to help wind me down for sleep, there are some great sound therapies on YouTube and I have them playing all night!!

Have you tried any diet changes or supplements or anything else to lessen your T? I feel it’s all about finding what works for you as tinnitus is very unique to everyone.

We will get through this together.

Ross

Hi ross81

Sorry to hear you are struggling with T.

Briefly, after 'having' T for 40 years, I don't 'have' it anymore.

I know this sounds far fetched, but I did it by simply 'redefining' my T as an ILLUSION, that the brain created for what ever reason.

So, when I accepted that it was NOT A NOISE, but just an illusion

It rapidly faded away.

And, the proof, I haven't had Benzos to sleep for over 6 months now!

If interested, please read my T post.

All the best!

Alps

Ross81 profile image
Ross81 in reply to

Hi Alps thanks for your message of hope and I’m so happy you’ve conquered this terrible affliction!

I read your post and am encouraged by it as I feel this is the way the sound machines work whilst you sleep, training your brain to listen to the REAL noise in the bedroom rather than the IMAGINARY noise in our brains!

I do honestly believe there is a way out of this for everyone through mental training, science, biology, diet changes or a combination. The condition is so unique to everybody, I think the treatment has to be tailored to the individual and this unfortunately takes a lot of time. When you’re suffering time passes slowly!!

Thanks again for the inspiration and I’ll check out your other posts

Ross

Hi Ross

Excellent you have an open mind, that will surely help

Here's a copy of my post on tinnitustalk

**********************

"Hi All

I've had T for 40 years now and and am very pleased to say it's GONE!

Here's how I did it.

From my early 30's, I started to note a background 'sssss'.

Straightaway, I attributed this sound to T, as some of my peers had related something similar.

I can say that, initially, I could completely ignore it, as it was 'background'.

And continued ignoring it, despite occasional spells where the T notched up ever so slightly.

Absolutely got on with my Life.

Then, about 4 years ago, I was experimenting with some supplements and the T ramped up to a MUCH higher level.

I know this is all subjective, as one person's HIGH 7/10 level may well be another's 0/10?

Anyway, couldn't sleep. Tried the usual herbal remedies.

Then, as the sleep was still not good, submitted to benzos, which I took for a few years.

And, continued to 'look' for a Cure. Nothing found.

So, looked at it from a new Angle.

There are 360!

I looked at the 'mechanics' of sound.

Which is very basic. An Event happens that creates Sound waves, these travel all round and our ears pick it up, send it to the brain, which interprets it as the Sound sensation we all know.

However, in the case of T there is NO Event.

So, where does the Sound come from?

Must be the Brain?

Which, for whatever reason, 'invents' the T sound that you then perceive to be a Real sound.

So, the definition of something not real is an ILLUSION or DELUSION!

It DOESN'T EXIST

And I was kicking myself for Paying attention to something that didn't even exist at all, for 40 years or so!

Now, I can honestly say it's GONE!

Thanks"

***************************

I wish you all the best Ross!

Alps

London20 profile image
London20

Sorry to hear Ross, I've has it for 8 years now, almost constant high pitched scream across my entire head. as you say its an unseen affliction and thus not understood unless you are suffering. It alters every aspect of your life. I dread going to bed and I have forgotten what silence sounds like but, i long for it. I use white noise and crackling vinyl to mask at night and after so long I do manage to sleep most of the time except when "t" dials itself up to level google plex! You just have to learn to live with it, accept and manage it. It is not a terminal disease. Good luck

Ross81 profile image
Ross81 in reply to London20

Hi thanks for the reply,

Yeah I’m only 7 weeks in now and have my first ENT visit next week to assess me. I just want to lessen it, when it’s loud it’s nauseating and can’t sleep it’s a constant cycle.

Have you tried Austin Goh on YouTube’s massage technique? It worked for me one time then not again but at least I had a few hours no buzzing!

Take care

Ross

Hi, ross how did you get on with your ent?

I have had bad tinitus 3 weeks. Multiple noices.

Any tipsadvise for when i get my appointment? Did rhey offer any treatments?

I hope you are doing ok..

Laura

Ross81 profile image
Ross81 in reply to

Hi Laura so sorry you have been suffering.

My ENT visit was ok they locked me in a soundproof booth and played me different tones through headphones, then I pressed a button when I hear the tone. The audiologist said I have minor hearing loss in what I thought was my good ear (the ear without tinnitus), and overall my hearing is good for my age.

For 2 days after my hearing test I had a pain in my non tinnitus ear, and I was worried there may have been damage but that went away.

They don’t really offer any treatments because tinnitus is so different in every case, different causes, different symptoms and people react differently to the treatments. I’ve personally researched treatments over the 5 months I’ve had this and found sound therapy and sound machines are the only way I can sleep. My GP has been pretty useless.

I’ve had a couple of blissful days with no tinnitus at all but unfortunately it always comes back. I find what’s been working the best for me is a sound therapy album I found on YouTube. Just type tinnitus sound therapy in the search bar and find one that will at least calm your tinnitus, there are lots of apps too which help to relieve your symptoms but you need to find one that works for your specific tinnitus.

Any more questions I’m here and the BTA guys are great if you give their helpline a call, lots of information.

Best wishes

Ross

in reply to Ross81

Thanks ross, im trying to find somthing to mask my right ear noice changes constantly like its tuning a radio so its hard to find anything to mask it. Iv tried lots of youtube videos but it seems to jump up and down over yhe top of anything. Last night had no sleep feeling very miserable today. People say it gets better but im really struggling

X

Ross81 profile image
Ross81 in reply to

Trust me I know what you’re going through, I’ve had it for just coming up to 5 months, the first few weeks will be your toughest test but believe me and others when we say IT WILL GET BETTER IN TIME, it does.

My T took weeks and weeks to improve but it did improve and there are so many apps and sound machines out there I’m sure you can find something that relieves your poor fluctuating ear! Try the apps that are specifically designed for tinnitus as the stuff on YouTube can be a bit generic and there’s a lot to search through.

It can be overwhelming but keep searching and listening to different tinnitus therapy solutions and you will find something, it just takes time to find what works for you, don’t give up.

Most nights I only sleep for 2 or 3 hours then awake for 1 or 2 then sleep for 2 and then have to get up at 7am and go to work exhausted. It’s a struggle it really is, maybe your GP can help you with some medication to get you to sleep? Seek help and tell them what you’re going through.

Also you say your tinnitus jumps over the top of what you’re trying to mask it with. It sounds like you’re putting the mask on to drown out the tinnitus completely, which is wrong. Try and use whatever mask you’re listening to at the same level or slightly BELOW the volume of your tinnitus, then focus, concentrate on the mask rather than the tinnitus. Your tinnitus will constantly fight for your attention so if you’re playing something too loud, the tinnitus will get louder to compete.

Think of it like you’re trying to listen to a conversation (your mask) in a busy noisy restaurant (your tinnitus). You don’t want to hear the restaurant noises so you filter them out to listen to the conversation.

It’s exhausting but remember you are early stages where your T will be at its worst. Don’t give up, get to know the condition without fear and we will all be here for you if you have any questions or just need to chat. We all have tinnitus here so you’re not alone in what you’re going through.

You will get through this.

Ross X

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