I hope you are well and finding your way to deal with it all.
I am close to making the end of my journey. I have had tinnitus for a long time. Loud, screaming tinnitus. Ironically, i used all the tools i found myself or was given to deal with it and that enabled to live my life well in spite of it for many many years. Sadly, a few months ago another tinnitus monster came along which i haven't been able to tame. I have used every resource to deal with it. I have been to all the doctors and i have had all the precautionary tests. I have used all the cognitive skills i used before and i have revisited them. I have taken further assistance from cognitive experts. I know i have exhausted every avenue of help.However, this time i know i cant live with the noise i am dealing with now. I rephrase that. I can live with it but it reduces my quality of life significantly. I have reached a point where it has made me into a zombie. In part, that is because i have reached acceptance of how bad it is but also because it has ripped my soul and my being apart. I am working now to find acceptance to find my place to end it all. I don't expect anyone around me to understand. I accept that. I understand i cant be helped and no one can have responsibility for it.
My time has come and now i need it to happen.
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Brett_angel
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I am desperately concerned by your post and urge you to contact your GP or go immediately to A&E and tell them what you expressed here. Failing that Mind website offers options to talk especially if you feel you need urgent help.
The Samaritans can be contacted 24 hours a day on freephone 116 123 and will listen.
Please, please speak to friends and family about how you feel.
I am so sorry to hear what you are saying. I have no practical advice to ease this but have the deepest sympathy for what you are suffering. Please seek medical help now and tell them what you have said here. There will be someone who will help you.
Please speak to your doctor or A&E and explain how you are feeling and how your situation has changed since you last contacted them. They are there to help us.
Why not go do whatever u want in life? Losing is the last concern, get a bus ticket across country and visit some peaceful maybe sacred places... No need to give up.. Ypu can go anywhere in the world...
You’re going through a terrible time right now but it isn't true that there is nothing that can help you now.
I would urge you to talk about your situation with your doctor or a health professional you trust so that they can try to help you through this.
I know that you have said you've done this, but it sounds like the situation has changed, and they need to know this in order to be able to help you.
Please hold on and do not give up hope. If there’s no one at hand you can contact:
Samaritans - for everyone, 24/7
Call 116 123
Email jo@samaritans.org
Papyrus – for people under 35
Call 0800 068 41 41 – Monday to Friday 10am to 10pm, weekends 2pm to 10pm, bank holidays 2pm to 5pm
Text 07786 209697
Email pat@papyrus-uk.org
Or please go to the nearest A&E department and ask to speak to the crisis team. If you call 111 they can help ensure that someone is there to see you.
(These details are assuming that you are in the UK as the forum is hosted here – if you are elsewhere there will be similar helplines and services. We can help you locate one if necessary.)
Nothing has changed. I have been to A and E for example and they didnt offer anything to change what im going through. Thats understandable. Sometimes thats how it can be. Acceptance is everything.
Yay Bret_angel, not wishing to sound rude but have you seen a psychiatrist? I know there’s no cure for T but there are stronger drugs that might help you exist with it a bit better? It’s just a thought as you sound depressed? I can’t think of anything else. It is your choice but I sincerely hope you can try to carry on.
choice rests entirely with me. Carry on and suffer or dont carry on. Going to A and E and talking to a person on the end of the phone wouldnt ever influence that decision. Taking a load of sedatives wouldn't either.
Hi Brett-angel. Sorry to hear you're going through it at the moment. While it's true there's no magic pill that will make the noise go away there's no reason to give up hope. You say things only got worse a couple of months ago which to be honest is not very long at all. You need to give yourself time to adjust to the new noise and start to habituate again. I'm sure that in 6 months time you will have experienced periods when you suddenly realise that you hadn't noticed the sound. When this happened for me it was like suddenly seeing the light at the end of a long dark tunnel and it gave me the strength of will to carry on. So please don't do anything in haste and give yourself time to adjust.
Hi John . I.understand your perspective but this noise is very much more complicated in its nature . It is a very confusing sound because frequently the the brain can't differentiate between whether it's an external sound or internal sound.to. To that extent I'm not finding any degree of habituation with it.
You said you tried everything. I'm curious, have you tried hearing aids? Hearing Aids could amplify the sounds around you and drowned out your tinnitus. A lot of tinnitus is a sign of hearing loss. I'm profoundly deaf from meningitis and I have tinnitus. Hearing aids don't work for me so I try to distract myself, deep breathe and mediate. Yes, it is very hard to ignore at times. My tinnitus changes on how I am doing mentally and physically. If I am anxious and getting ready to have a panic attack my tinnitus roars. If I am getting ready for bed it rings. If I concentrate on it I hear it louder than ever. It's overwhelming at times and it makes it hard to concentrate. Please don't give up hope. There is something out there you just haven't found it yet. If you want to talk I am always around. Pm me any time. I wish you the best.
Thanks for your concern and extension of support . The problem is that in allmy time with tinnitus this is an extremely complicated challenging noise . Firstly I can't find a way to deal.with it and secondly I don't care to live with it .
Of course i wanted and want a solution. However, ive had alot of experience with tinnitus and this new low pitched LOUD BASSY noise is extremely complicated. I have been using every technique and resource advised to me and which i have revisited. The outcome is that it is still extremely intense and troublesome. So, i have exhuausted any hope of it getting better.
Hearing aids now a days have a lot of built in tinnitus relief. Here is a link that explains the benefits of hearing aids for tinnitus. It could be an option to consider even you don't have hearing loss. Just something to think about. I do wish you the best.
My dearest thoughts are with you Brett_angel. I fully understand where you are but ending it isn’t the answer. Good luck in the route you choose. Best wishes!
I can totally accept how you’re feeling, but there is hope. I’ve had it for 36 years and every now and then it flares up. Don’t really know why. For a few months I’m literally floored by it, but eventually the brain can choose to ignore it. I still hear it, but it’s no longer a threat.
Please seek the help of a hearing therapist, mine has been invaluable to me for many years.
Please think carefully about what you choose to do and the impact it will have on others around you.
Thanks. So you have my kind of years of experience of it. I did live with it blaring away for 30 years but this new sound is a different beast. The issue lies in its complicated nature. I have seen and spoken to everyone . Taken advice. Used all the tools i had at my disposal. Yes, I can live with it but it's utter misery and so disabling . I can only compare it in.nature by what I already know . I know it's awful. Bizarrely , I'm not feeling anxious right now . I just feel like someone has scooped me out and ground me down. Hey how.
Hi, my noises now are totally different to when I first got t. In the beginning it was horrendous, but over time it faded to the point I only heard it if I covered my ears. Then all hell broke lose when I got pregnant, I was desperate. My GP had to prescribe sleeping pills which for obvious reasons I didn’t want to take because of the baby. After she was born the t calmed again only to return the next time I got pregnant. I was at my wits end, barely coping. Again after my daughter was born things calmed again. Since then I’ve had another 4 really bad spells. Each time the noise seems louder, but eventually I get to the point of it not bothering me. It usually takes me about 3 to 4 months to get through it. My first stop is my GP, then my hearing therapist and then my homeopath. This is what works for me.
Please seek help from wherever you can. Believe me I’ve been where you are and I pray I don’t go back there, but if I do I’ll get through it again.
Hi, I’m at a loss as to what to say to you. I can only reiterate what I and others have said. It’s also worth trying a course of antidepressants, they’ve helped me in the past. Anything is worth a try if it will help you cope. As you start to cope better then hopefully the t will become less intrusive.
I can honestly say I know how you’re feeling right now, but in a few weeks it might be easier to deal with.
Hi Ingrid. Sadly, i have tried all the prescription anti depressants. There was no impact on the sound or how it affected me. If i return to my GP there isnt anything else they can do for me.
Hi it’s always worth a try. New drugs are becoming available every day. I’ve gone from no pills a day to 11 plus homeopathic remedies.
Life is precious. I’m coming through breast cancer and believe me I’ve been seriously down although I try to put on a brave face. Inevitably once in a while I crack, but I’d rather be here with my t than not.
Hi, We know exactly what you are going through. Me personally have exactly the same really loud scream I call it. In fact as I’m writing this is going mega but you me all of us must keep going and never give up to this shxt. One day I really believe someone somewhere will come up with an answer. You must remember that the British T association are fighting every minute of every working day and more. Good luck JB.
Thanks for your understanding. Sadly , this is not something I could get on top of. I think it lies in the fact the sound is very perplexing in its nature because it's not a typically neutral sound like a hissing or a ringing.
Brett, my noises were not those normally associated with T. Difficult to describe. The pain was both an intense laser piercing my temples; a hot pain that crawled over the top of my head, plus the intense pins and needles all over my head. This went on for months.
GP prescribed Zopiclone for sleep and 30mg Mirtazapine to lessen the anxiety, reducing over a 12 month period.
I went down the usual route of ENT, audiology, CBT, sound oasis machine on rainfall whilst sleeping (still use my sound machine), and surrounding myself with low level ambient noise all of the time. Not loud, just enough to make my ears work to listen.
No one really knows what you're dealing with but yourself. I myself I'm going through the same thing but I'm not going to give up everyday is different I have you been hearing aids special for that noise but at times they don't help and I take it out and the screaming is so bad it's hard to deal with it but I won't give up I won't let this animal tame me. I pray for you and that you find the strength to continue.
Just remembered Brett, that there was a lovely lady on this forum - a long time sufferer with T, plus other health problems - who got another horrible head noise and was at the end of her tether. She was prescribed Nortriptyline which she later posted as having lessened, or got rid of, the head tinnitus.
Brett, people suffering depression don’t realise they are depressed and need someone to tell them, nicely.
My Mirtazapine were prescribed specifically for the anxiety caused by T and somehow the meds did calm my brain/nervous system (whatever) and my T calmed down too. There must be some meds that would help you - I lost count of the number of times I visited GPs/ENTs/audiology/emergency hearing clinic etc etc.
All of your forum friends are rooting for you in our virtual world so keep the faith and you will habituate again.
Angela xx
Ps lovely folk on this forum saw me through my bad time xx
I understand what you are saying. I certainly dont feel depressed. I am a very matter of fact person. The fact is, the complex nature of the tinnitus i have now means i cannot find a way to live and function properly with it. I have used all the resources i know i can call upon from prior experience and sought any available advice. Sadly, none of those have helped me move forward.
I think I can understand where you are coming from but who can be sure. It's impossible to compare what I hear and feel to what's going on in your head right now.
I have concerns that I will be where you are. My symptoms are pretty intense and unpredictable but I am finding a pattern that is reassuring.
I've had annoying T for over 20 years. Then I had a brain scan that gave me hyperacusis and hearing loss. It's currently under investigation but for two months I've been having to adjust to pressure in both ears, low thumping, running engine, vertigo and spikes in the screaming part.
Those spikes are what give me hope. If it can change, it can change for the better.
I've got too much to live for to let it depress me. I'm an artist and spend my days painting to support a family. I've got 5 year old twins and a stenosis that caused neuropathy affecting my hands. Couple that with the vertigo and it takes a lot of piss and viniger to stay at the easel. Last October, I lost my house and studio to a forest fire.
It's not poor me, I thought I was barely holding on. Yes, I've got a glass of wine in hand now and will indulge in any guilty pleasure that I can justify but I've got goals keeping me from slipping in to depression.
As with Van Gough, I'll do my best work in my worst state. I've the advantage of learning from his lesson and my experience with past depression.
You feel that way now, but tomorrow you may feel completely different. It's tough to see it through but amazingly, the human mind can overcome things in mysterious ways.
There is still so much love to be shared with people who care about you and those you've yet to meet. Something great could be in your future. Even if it's just I thought or an appiffany, you may still be able to experience those things.
So, about the spikes, I find my attention span gets exhausted from paying attention to the racket and I start to think about what I'm doing. Then I realize that my increased T is not as fixed as my old constant hissing wring that I'd come to know.
If you can find something to focus on that allows you a minutes escape from the sounds, you can increase those minutes to 1/2 an hour. That's enough time to have a positive experience. Then keep adding those 1/2 hours together. Meanwhile, do something to lift your spirits like a walk in nature or a trip to the museum. Whatever you like to do, give it a chance if you can manage.
As with so many others here, my thoughts are with you.
Thanks for your reply. I get you and i truly sympathise with the issues you are having to contend with in your life at the moment. I admire your ability to forge on. I understand that for you the unpredictability of your symptons is a bog issue. For me, the issue is that since i suffered this new troublesome sound it hasnt ever relented and only ever increased. I have had tinnitus for endless years so i already had all the tools and was aware of the resources i can use to help myself. Sadly, this time i have found no relief or ability to see a way round a huge obstacle.
Know that people care no matter what you think or feel. I am a sufferer and I have habituated to my tinnitus for the most part and for now anyway. Is there no one you can turn to for support?
I can completely sympathise with your position, it's a thankless task trying to put up with it.
I've also noticed some changes recently with my T, it's usually mixture of high frequency noise/screaming, in past couple of weeks have been other strange sounds as well, so may be others similarly affected.
I haven't had any anti-depressants, refuse to go down that route!
Nothing wrong enough with my hearing to justify any hearing aid, I've always found any type of internal hearing bud gives me hot and then painful ears so wouldn't wear them anyway.
Had to give up work in sales, concentration absolutely shot due to T. Can't get any benefits. Now work for myself, music and machinery on helps to block it to some extent.
Skint but so what, it's only money and life goes on!
I try to keep smiling, even though there's been loads of other crap/s*** happened and it's always seems to be me that it lands on.
But I'm still here, I refuse to be beaten. Maybe I'm just a stubborn "%^&%**".
Now the controversial bit that many people may not like, but hey, I'm being realistic;
Don't know about your family /friends support network, I hope you're not alone.
My brother -in-law ended his own life about 18 months ago, totally out of the blue to everyone - literally everyone. It left a big hole and everyone questioning themselves about why and if we could have done anything to help. He left 2 young children behind.
So if you do decide to go down that route talk to everyone who may be affected, tell them why and how you feel so it's no shock to them if it happens please.
I've lost a load of people over the years, the sudden ones with no chance to grieve are the worst and leave so many unanswered questions for all.
I appreciate everyone replying with their best thoughts, empathy and sympathy. I likewise feel the same for anyone else who has replied who is experiencing suffering ( i have tried to reply to everyone individually). I can only really write that i continue to be tormented every moment of every day and its very real. My overwhelming feeling is exhaustion. It has mentally and physically wiped me out. Other that that the incessant unbearable noise grinds on. I know i have done everything to try to relieve it. The desire for relief is high. I just genuinely hope that no one here feels like i do every moment of everyday because its just ridiculously awful.
I think finding something to live for despite the awfulness is all there is. I know I live for big things such as love - but also for small things such as the roar of the sea and the sunny summer wind in my hair.
Life isn’t infinite for any of us of course - but I think, with all forms of tinnitus and other equally horrible stuff such as Trigeminal Neuralgia, Cluster Headaches or small fibre neuropathy or any number of appalling sensory impairments - there is always some hope for each of us somewhere by living. The burning pain in my gums and lips and Trigeminal Neuralgia and my tinnitus are likely to all be part of my autoimmunity. I can’t bear the idea of not knowing the cause so this keeps me going too.
Ending it would be like not finishing the big story - which could just possibly have a joyful ending if a cure is found. Personally I have to know what’s round each corner - it may be relief because what can come from nowhere can go.
I can see that you have reached a decision that your new tinnitus is impossible to live with along with your pre existing T.
But as others have said - this stuff can change, it can remit and also we can use our suffering to write poems, draw and paint the pain, shout back at tinnitus in effort to raise awareness. I’ve had mine for years now - probably part of broader neurological symptoms and autoimmune disease. What really upsets me most is if I feel disbelieved and invisible conditions are easy to doubt. So I push my doctors to learn and I fight chronic illness every step of the way. Couldn’t you try and do this too perhaps?
I don’t remotely doubt any of the tinnitus experiences you describe - I have had plenty of my own to contend with avdcin not depressed either.
But too many of us are told that invisible conditions with no known cause are due to depression. And when we know that we aren’t depressed of ourselves, but the cause is unknown, then it’s so much harder to process. So for this reason I fight all medical gaslighting every day by reading and researching possible causes of my body wide sensory problems. Bizarre as it may seem this inner and outer battle keeps me going
So if you aren’t innately depressed but you just can’t reconcile yourself to your tinnitus - then could you harness it instead in order to help others perhaps or create something wonderful out of your suffering perhaps?
After all we humans only get one shot at living - so why not try and use your own experience of awfulness to help others through theirs - research, raise awareness, fight for a cure. You never know - one day you might just wake up one day to find it’s gone?
You do need help. More help than we on a forum such as this can hope to give you. I use lots of communities and forums as I have a systemic disease and I see people saying the same as you. I think perhaps it’s not knowing the cause of such an invisible problem that really seems to get people down most?
Have you ever seen a neurologist or had brain MRIs - or proper vestibular testing? There will be a cause, the thing is to find it.
I saw an ENT consultant who’s expertise is balance disorders earlier this year. He was so nice that I relented to some awful testing for him. He said he looks forward to seeing me again but seems too busy. He did reformat my sinus CT and found some structural abnormality and this helped me understand my noises and hyperacusis more.
My tinnitus is an incredibly high pitched whine 24/7. I also have pulsatile tinnitus that scratches to the rhythm of my pulse. I think the pulsatile tinnitus has been explained by ENT finding some high riding venous bulb on my jugular - which is untreatable he says so I just live with it - easier now I know why it’s there.
I’m guessing that the other high whine tinnitus relates to my body wide neuropathy, high inflammation and vestibular issues that are due to faulty proprioception and degenerative discs in my neck.
In fact I guess my whole body is a mass of dying tiny nerves and multiple faulty signals and I’m sort of used to them although I do hate them very much!
And yes sometimes it is very hard to bear so much sensory crap - but at those times I focus on memories of sunshine and gentle breezes and the sea sounds and my dogs.
I carry a fold out seat stick and avoid being near moving vehicles and don’t let anyone try and fob me off with functional diagnostics. I have severe fatigue so i work on managing that better with an occupational therapist too.
Yes It’s all a bit hellish I concede - especially the burning lips and gums and loss of taste and smell. But at least it’s my very own private Hell and you know, it’s amazing what we get used to given time. I still love my loves and make artwork to deal with the rest.
I doubt any of this will make any odds to how you are feeling but I’m saying it anyway, just in case.
I am truly tormented by it. It's that loud, heavy, physical and distracting. Just ugly. I really do know what severe tinnitus is. Can't be many people keen to go on like that .
It’s so horrible isn’t it? Very hard to understand if you’ve never suffered from it.
I’ve been where you are several times before, but I always come out the other side. When mine’s been bad in the past I’ve literally been unable to concentrate on anything. It just becomes the focus of everything in day to day life. I guess I’m lucky as I’ve just been through another massive flare up and even as I’m writing this I can hear my noises, but I’m ok. If I keep busy then I don’t actually notice them at all.
I wear 2 hearing aids which are a great help in reducing my t. They’ve got built in maskers for when things get really bad, but I’ve only used this for a couple of weeks. Without my hearing aids I can hear my t above every other noise and it’s very loud.
I’m not sure why my t becomes loud again or if it’s just because my brain just latches onto it and then once again I’m in the never ending cycle of despair.
I guess we all hear different things and what’s loud for one person isn’t for another.
I hope you can find a way to help you cope better. Last time mine was bad I went on holiday and just being away from everyday routines was enough to get me back to where I am now.
I honestly don’t know what else to say. I can only speak from my own experiences with my t over the past 36 years. It’s not always a problem, but when it is it floors me.
Please take care and if you need any support you can always private message me.
Hi Brett, re the hearing aid post....you don't have to have anything wrong with your hearing to have a hearing aid fitted for tinnitus, you can have one made that has a different low noise that you can cope with therefore taking away the one you hate ....it's worth a try surely. Take care.
Hi Brett...not sure if a sound generator is the same as the link below...let me know how you get on please. Take care.
Tinnitus? Try hearing aids with relief sounds | Oticon
oticon.global › Hearing aid users › Hearing loss › Tinnitus
Specially designed programs in the hearing aids allow you to play various sounds that can help you move your attention away from your tinnitus. ... You can adjust the volume level of relief sounds directly on the hearing aid or via the Oticon ON App. We know that people with tinnitus require different sounds
Please seek someone to talk too ! I understand how you feel I often say this to myself to end it rather then deal with this the rest of my life. It’s good to talk and talk every min if you have too!!! All the best my friend !!
I found this old thread and it left me worried and very sad. Life can be so cruel for no reason. I am hoping that you reply to this, just to let me know that you are alive.
I have been to very low periods with my T and it is a burden.
Hi Brett . I too have just found this post. I was only saying earlier today how we all have varying levels of being able to cope. and why finding a cure is so important I have been to very dark places even before this T began.
Love to you all
Are you still on here Brett Angel
Dear Brett _angel people living with Tinnitus will reach out and give you support and help as will The BTA I dare say Tinnitus sufferers have gone through their own hell and still living with the monster I know This may sound Cruel but I think a Negative post of your plight is hardly going to be easy reading for all who visit this site Do you not want to see another sunrise or a sunny day or enjoy what you enjoy to distract yourself from your Tinnitus when I first got Tinnitus I was very frightened and I had to face each minute and every hour of everyday but it gets easier and I cherish my family and friends and my dog who gives me so much joy and I enjoy what I like doing , as before I got Tinnitus I got my life almost back to normal and okay Tinnitus is a intrusive and it can wear you down at the same time I look forward to being able to do what pleases me I never thought I would have got to the position I am but I have achieved it and so can you So stop being so Negative and work through it and with the right help you can find peace and strength and enjoy life again .
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