Sadly no cure😢: Hi guys. This is my first post... - Tinnitus UK

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Sadly no cure😢

Jasons1969 profile image
41 Replies

Hi guys. This is my first post here. I started with tinnitus back in February 2006. You never forget the date do you ?

I have read so many desperate pleas for help but sadly I don’t think there is any. I have tried everything you can think of like hypnotherapy, acupuncture, cranial massage, white noise generators, ear buds, soothing sounds like whale song and so called dream music and of course crank medicine from crank doctors. My tinnitus is as loud and depressing now as it was back in February 2006. I guess I shall just have to accept it like everyone here does. Retiring to bed for a good nights restful sleep is just a memory for me now, as even with prescribed Zopiclone tinnitus wins every time with chronic insomnia joining forces to make my life a living hell.

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Jasons1969
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41 Replies
rabbits65 profile image
rabbits65

Good morning Jason , I am sorry your still feeling so sad and down after all this time . As you say your still going through a “ living hell “. You wonder how we can all virtually accept our tinnitus when there is “ no cure”. whilst I agree with a lot of your comments and certainly for me it’s been a very very long road too , trying my hardest to accept the tinnitus , I do think that when you read about people “ habituating” we do have to believe in the truth and hope about that. I cannot and will not let tinnitus “ win”. It our attitude to the distress of tinnitus that is so important to our well being. I get good days and bad days like everyone else and I do have to fight depression too , my salvation has definitely been my two loving poodles and taking them for l some long walks providing my arthritis allows. I do therefore urge you to please see if you can make a few changes in your life perhaps to see if your tinnitus can be made just a little bit more tolerable for you. I wish you well. 😊

Jasons1969 profile image
Jasons1969 in reply torabbits65

Hi Thank you it is good to know that there are people who can genuinely understand what it’s like to bear this awful curse. Although sympathetic, my family never ask how I am feeling because there are no visible wounds. A hidden nightmare 24/7.

Glad to hear you take comfort with your your poodles. I have an adorable Bengal girl to help when I feel depressed. Only the other day I wondered if our furry friends can also suffer tinnitus! What hell that must be unable to communicate their distress.

Take care and thanks again for taking the time to reply.

msspinner profile image
msspinner in reply toJasons1969

I guess our furry friends can also suffer from T. Sending a hug!

rabbits65 profile image
rabbits65 in reply toJasons1969

Good morning , thanks for your reply , do you know what it hadn’t occurred to me that our dogs and all pets could possibly suffer with tinnitus too. I agree with you that our families and friends don’t say much if anything to us because of course there is nothing visibly to see . In the beginning I did I think drive my sister mad as I kept talking to her about it , that was 2 years ago , now I don’t talk about it so much , but I do think and care about everyone that writes on this site and feel that silently we do have such a lot in common

Jasons1969 profile image
Jasons1969 in reply torabbits65

HiYes I agree, that is why I don’t mention it anymore as in the beginning I was always on about it and like you I gave up as I began to think that my moaning was probably as bad to them as my tinnitus is to me.

At least ‘they’ could tell me to be quiet😂

rabbits65 profile image
rabbits65 in reply toJasons1969

Exactly. Spot on !!!!!

Villagelife profile image
Villagelife in reply torabbits65

I had to reply to your post purely because I have 2 poodles 🐩 😃. Mine are miniature a white boy called Teddy & a brown girl called Kola. They are very loving.

rabbits65 profile image
rabbits65 in reply toVillagelife

Hello Villagelife , thrilled to hear about your two poodles too. I have a black girl called Lulu miniature , 5 years old and loves looking for adventure . The other one is also White boy miniature and guess what he’s called Teddy too . Both of mine are very loving can be quite a handful when they are together let off the lead . Nice to hear from you . Keep in touch . I live Bexhill on sea . From Penny

Villagelife profile image
Villagelife in reply torabbits65

Hi Penny nice to hear from you my girl Kola is 5 in September , Teddy is 6 in October. I think Teddy is an apt name for a white poodle especially when puppies 😃 Mine can be a handle full off the lead as well, Kola will run off looking for rabbits, squirrels etc, Teddy will run off after a girl on heat 😁he is still intact. I live in Lincolnshire about 20 miles from Skegness.

rabbits65 profile image
rabbits65 in reply toVillagelife

I see you private messaged me I’m not sure I can get the full message up . I will keep trying. My Teddy has been ‘done’ as I don’t want him chasing girl doggies!!! My Teddy was born on Christmas Day. He’s 4 and lulu is 5 . She is 19th December birthdate. Shame we live far apart would have been good to meet up for dog walking and talking . Plus of course supporting each other with our tinnitus etc . I am 69 and my name is Penny. 😃

Villagelife profile image
Villagelife in reply torabbits65

Hi Penny I'll send another private message to see if it works.

rabbits65 profile image
rabbits65 in reply toVillagelife

I read part of it , then they said it wasn’t someone I followed , it then got blocked. How can we communicate ? My poodles are my life and help me cope with tinnitus . Lots of walks is good therapy . 😃 🐩 🐩

doglover1973 profile image
doglover1973 in reply torabbits65

Hi Penny. If you follow Villagelife you'll be able to read the message. To follow someone click on their name and then click on follow - in the blue box on the top right hand side of their profile page.

rabbits65 profile image
rabbits65 in reply todoglover1973

Thanks Jo, sometimes when I press on things they don’t work , if I press on their picture it should send me to their profile . Think I’ve tried pressing on Villagelife picture and it didn’t go to profile . I must try again. Hope your ok and well , 😃

doglover1973 profile image
doglover1973 in reply torabbits65

You're welcome 🐶

Villagelife profile image
Villagelife in reply torabbits65

Hopefully you have received my private reply.

rabbits65 profile image
rabbits65 in reply toVillagelife

Yes . I have , I am replying now 🐩 🐩. thanks. 😃

rabbits65 profile image
rabbits65 in reply toVillagelife

I have managed to read your private messages . Doglover kindly suggested I press to follow you . Did you press follow on mine ?

Rangersdad profile image
Rangersdad in reply torabbits65

December 16, 2016....

Hi Jason1969,

Sorry to hear that you are struggling with your tinnitus, it can be hard when its so loud. I wonder if it would be worth talking to your doctor about exploring a therapeutic approach, like CBT to help you manage it? This I suggest, as so far, getting CBT from a professional has the most evidence of helping manage tinnitus, as it provides an emotional outlet and can treat other aspects of tinnitus like depression or insomnia. You can read more about CBT here: tinnitus.org.uk/tinnitus-an...

Similarly, perhaps a support group would be useful, as they can be great places to receive reassurance and emotional support. Tinnitus can feel quite isolating, and these groups provide the opportunity for you to meet and talk with likeminded people about how it's making you feel. There are plenty of face-to face and online support groups which you can access on our website: tinnitus.org.uk/find-a-supp...

doglover1973 profile image
doglover1973 in reply to

Hi Hidden Where's TinnitusUKPat these days? I haven't seen him recently 🐶

rabbits65 profile image
rabbits65 in reply todoglover1973

Hi , yes I was wondering where Pat was too !!!

MOLKO1972 profile image
MOLKO1972

Hi Jasons1969 and welcome to this forum,

I agree with you about never forgetting the date your T started. It is pretty much etched in my mind!

I am just over a year with T and it has been a struggle at times for me. I searched the Internet for that 'miracle cure', but I think after about 3 months in I knew I was wasting my time. The more I focused on a cure, the more I noticed my T. I decided then that I just had to learn to live with it. Everyday I wake up and my T isn't too bothersome, but by the evening it's raging! It seems to spike as the day goes on. Habituation is proving a bit difficult, but I hope I get there one day.

Despite everything I still walk around with a smile on my face. You see I won't let it beat me or drag me down. I know it is difficult to live with and I know there are many people who are suffering...I have been one of those people, but I made a promise to myself that I had to make the best out of a bad situation.

I wish you all the best :)

perlcoder profile image
perlcoder

Hi Jason,

I have suffered from T for a few more years than you, and yes, the date becomes as important as that of other key events in our lives.

Obviously, people's sleep is affected to a different extent, but for me, as for you, it is absolutely crucial. Ambient sounds and SleepPhones do not work for me and I am quite sure that the majority of my (our) problems with T would be so much easier to cope with if restful sleep was possible - that haven at the end of a difficult day as something to look forward to, and which would actually recharge one's batteries. The reality is that many of us achieve some approximation to that only (and unpredictably), when the sheer combined exhaustion of insomnia and daytime coping knocks us out for a while.

Pending a better solution, any safe prescription medicine that would induce deep sleep would be the best possible help. I am not aware of any such thing. Maybe one day.

Jasons1969 profile image
Jasons1969 in reply toperlcoder

Hi Pericoder What can I say? It’s quite clear that we are similar if not the same.

I managed to persuade my doctor to prescribe Zopiclone and Amitriptyline for my insomnia. It worked and I was enjoying seven to eight undisturbed hours sleep but sadly he would not continue this past two months stating the issue with addiction!

I explained that I would rather have an addiction to medication than an unwanted addiction to alcohol and Nytol which I need to take prior to taking on morning shifts as I am a registered nurse.

My plea fell on deaf ears excuse the pun!

Take care.

Jasonn69

Villagelife profile image
Villagelife in reply toJasons1969

Im a retired nurse I used to work nights and took doxylamine with a shot of brandy in the mornings to help me sleep in the day.

Jasons1969 profile image
Jasons1969 in reply toVillagelife

Sounds good to me😁 Do you miss nursing ? I do big time. Theatre was my specialty not scrubbed but anaesthetics. Best job ever although I am now working two afternoon a week in a veterinary practice which I equally love. I couldn’t be a veterinary nurse though as the few occasions I have witnessed cats and dogs being euthanised kills me! Take care.

perlcoder profile image
perlcoder

Hi Jason,

I was lucky in the sense that these severe sleep problems have occurred only over the past 5 years or so. For the most part I was able to sleep through the night in the earlier period, though I do ask myself now whether that sleep was truly restful. Be that as it may, I was asleep, and if I woke I could easily drop off again.

I had prior experience of amitriptylene (pre-T), for post-herpetic neuralgia, and it made me sleep very well. When the T deteriorated 5 years ago my GP was more than happy to prescribe it at my request, and there was no time limit (at least not initially). The fact was though, that it didn't work to keep me asleep. Even with the worst T, I always go to sleep within 10 minutes of my head hitting the pillow - that has been true all my life, but staying that way is the issue, and so we agreed to discontinue. I haven't tried zopiclone, but for the reasons you give, I doubt that there would be any point to asking for it now.

I have tried valerian based propriety tablets, but they are pretty much useless. I have considered Nytol but never tried it. Maybe I will one day.

Anyway - good to talk with you.

Chokdee profile image
Chokdee

Try Mirtazapine for sleep. Its had good results for tinnitus sufferers

Jasons1969 profile image
Jasons1969 in reply toChokdee

Hi I’ve tried Mirtazapine and many other benzodiazepines but nothing helps reduce the constant intensity. As previously mentioned the only meds that have been of any use are Zopiclone and Amitriptyline tiger which gave me a good nights sleep but sadly my doctor would only prescribe for two months. It’s medication that would help during waking hours is what we all could do with!Thanks for replying and you take care.

Pita profile image
Pita in reply toChokdee

I take Mirtazapine for moderate depression, but has made my T a lot worse. We are all different.

bantams profile image
bantams

Hi, Really feel for you to hear you are still struggling with your Tinnitus after so long.It took me 2 years to accept my Tinnitus, and at one time I was in a bad place thinking no way can I carry on living with this constant high pitched ringing in my head, but partly due to being on this forum and reading how people had "learnt to live with it " eventually things started to improve. Now my Tinnitus does not bother me but I still get the odd day when it seems louder so I just try to find something to take my mind off it, having 5 grandchildren helps!

I understand that what works for one person will not for another, just hope that you can accept your Tinnitus soon, Good Luck Alan

Spurdog1 profile image
Spurdog1

Dear Jason, I hope that you have read your comments above with a fine toothcomb. It strikes me that you have been searching for that elusive product, but i read it as a battle.Then you look at the start and it's submissive. "No, I can't find anything".

This to ,me suggests you have put yourself under pressure. Tinnitus is tinnitus, rarely if anytime going away (rarely it does, very rarely). Will you now relax, because the more you relax, rather than search a lot of your problem will disappear (you won't notice it, because you are getting on with your life. I'd like a posh electric car, a new one...but that's not going to happen, so I get into my Nissan and get on with driving, not looking at electric. Does this make sense to you?

The sooner the battle ends, rest and relaxation arrives. I've been living with T for 20 years, 2002 though i cannot recall which month. I know stress from a difficult work colleague caused this prob for me.

AldoArgentina profile image
AldoArgentina

Hello!! Yo can't imagine how I comprehend you!!! My life was a living hell too! Perhaps these things might help you: 1. You must keep your blood pressure low as you can and is important to control whether you snore. 2. Take Magnesium L. Threonate (Only this Magnesium!!!) 3 hours before bed. Look for information, this magnesium is really good for relaxing your brains. 3. Do you know Mimicking fasting diet of Walter Longo? In Argentina there aren't doctors to guide us with this diet, perhaps you can find one 4. Take large amounts of VitB. And finally homeopathy might help you too. I’m doing all of these and my T is going down little by little. I wish you much luck!!

Villagelife profile image
Villagelife

I find there isn't any respite from Tinnitus. I've tried various apps but I still here the high pitched ringing over it.

doglover1973 profile image
doglover1973

Hi Jasons1969 Sorry to hear of your struggles. I remember the date very well - 13th July 2020 . After a decade of mild T I woke up to troublesome T . The difference was unbelievable. Like everyone else I scrabbled around on the internet trying to find a solution but there isn't one - as you know. Habituation is elusive. I'm not there yet although I've come a long way . I hope things improve for you.

purenostalgia profile image
purenostalgia

Hi Jason, I have accepted that there is no cure or relief from my Tinnitus, I now call my bedroom a torture chamber and live one day at a time, this has helped me come to terms with tinnitus.

Jasons1969 profile image
Jasons1969 in reply topurenostalgia

Hi You are so right! A restful place to sleep to dream. The reality is a torture chamber. It has become the very worse part of my day. Might sound crazy but I actually loathe this room.

purenostalgia profile image
purenostalgia

Jason I took my audiologists advice, "try to teach your brain to follow a regular sleep pattern" I go to bed at the same time every night (midnight) put my phone under the pillow my tinnitus is still deafening but I do drop off, usually have about 4/5 hours, I am happy with that.

Take Care

Mike

Onedge profile image
Onedge

Morning Jason,I’ve had tinnitus for years and it’s so distracting and continuous with some better days but never good days I’m afraid. I’ve tried all sorts too. There was one video on you tube by a doctor who pulled on the ear lobe, down and slightly forward 6 times. My doctor recommended I buy Otovent. It’s a middle ear equaliser. Helps sometimes when pressure builds up and you have a symphony going on in your ear! Last December I went to an Hearing centre and the specialist did micro suction on the ear. It did indeed stop the popping that I had 24/7. He insisted that I had middle ear dysfunction and that I had mucous collecting behind the ear drum from the sinuses that wasn’t draining away and that a nasal spray and anti histamines might help until I get a scan done. I think we are all going mad with trying everything possible to ease this horrible problem. I only suffered for years in the left year and miserably I’m starting to get it in the other ear. Perhaps the silver lining here, for me, is it will stop me falling over to the left all day long and equalise the pressure and constant pain- wishful thinking but what else can any of us do!! So pleased we can share our problems on this forum though. Good luck 🤞

Hi Jason

I just joined this forum and was struck by the battle you are facing, one that I and others here recognise all too well - you aren't alone in this :) My tinnitus is also screaming loud for almost 30 years, I've tried to explain to others the large extent it occupies the "bandwidth" of everything I hear. Its truly awful not to be able to hear silence or the intricacies of delicate music etc.

Over that time I've found that since there is no cure I had two choices 1) to find coping mechanisms to accept it 2) continue fighting it by searching for relief through medication, white noise etc etc. Fighting is stressful 24/7 : it hasn't resolved it, any cure is outwith my control, and actually it gives the tinnitus the focus time you actually want to avoid.

I chose option 1) by asking myself what do I need to be happy, both generally and in what I want to hear. Also I found what makes it worse and avoid those, e.g. There is no silence so avoid silent environments /make them non silent if you have to. So I love walking in nature and listening for the birds and buzzes, the wind, the clouds, appreciating the visuals and smells, the sun on your face and the rain on your skin - tinnitus is always there but youre intentionally appreciating the many other things at that moment. It has to be things you yourself enjoy, so if nature isn't your thing don't force yourself to enjoy it! By rewarding yourself with enjoyable things/times whatever they are and however small it is all time in the bank that you aren't giving your attention to tinnitus. Just talking about it here is aggravating mine because that's what I'm mostly thinking about at the moment. But it's OK because conversely the other thing I try to do is when it's really strong is just let it scream for a few minutes listen to it without judgement, breathe deeply through it and then go on to do something else rewarding, fighting just makes it worse in my experience.

For me as I get older my hearing is getting worse and the prominence of tinnitus is getting stronger so I've decided to stop fighting it, I've accepted that worse case scenario that even if it's only thing I'll ever hear in old age I'll want a "bank" of things/experiences to offset - it doesn't have to be the thing to destroy your happiness,maybe try let it be and find the balance for the other side of scale for your happiness.

I hope this helps

John

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