Hi I’ve just joined the forum as feeling pretty desperate and depressed about my tinnitus right now! I first heard my tinnitus after an ear infection in my teens so a long time ago. It began with a high pitched ringing noise just in the background and I guess I just lived with it. Over the years I know I have damaged my hearing going to loud music venues and developed tinnitus in my right ear too, which is also a ringing noise at a different pitch to the left. In more recent years I now hear four different sounds in my left ear, the ringing, a white noise hiss, a low droning sound and in the last six months a very muffled sound I can only hear when things are quiet and especially at night. It’s hard to explain as it’s almost like mumbling voices or someone moving around but it comes with a sensation of being touched or the vibration of someone close by and this is very disturbing when I’m asleep So I’m having all these sounds 24/7 in both ears and recently they have become extremely loud in the left ear. Loud to the point of waking me up all night long and being unable to get back to sleep. They are so loud I hear them over the television, conversation etc. it is totally overwhelming. I am having constant headaches, dizziness, can’t concentrate on anything. I’m exhausted with not sleeping and everything is really difficult. It is affecting my whole life right now.
I have tried listening to music, white noise, tinnitus apps on my phone etc but it seems to make it worse and louder. I wake up in the night in total panic thinking someone is in my room due to this strange sensation of hearing and feeling someone moving around. ( I think it could be something to do with my pulse maybe but it feels very real at the time) and the constant roar of the other noises. I am feeling despair and anxiety constantly as I know there’s no cure for tinnitus and I have a real concern how I am going to manage this constant overload of noise in the future. I’ve visited my gp with this sudden change and had a referral to ent but there is a waiting list of up to three years! I’ve been prescribed a very short prescription for temazepam to try and get a few nights sleep but the tinnitus is still waking me at least every hour.
sorry for the long post!
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Rabbitglass
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I am sure people will put some very good posts up soon but have you asked to see an NHS audio therapist? They can be quite helpful. To speed up your referral to ENT let your doctor know how really bad things are and ask him to send a letter to expedite your appointment.
I just want to say that entirely understand your position and feelings. Although I don't have the range of sounds that you experience, I have had T since the early 2000s, with a dramatic worsening in 2017. As in your case, my T is primarily located in my left ear, where I have more severe hearing loss than in my right. I have had an NHS phonak aid plus masker for my left ear since 2017, and recently that was replaced by a pair of more modern phonaks with masker and bluetooth, they are very good. I don't know if you have had a hearing assessment in the past, but years on an ENT waiting list is far too long for a recommendation. Can your GP not make an immediate referral? In my NHS Trust we can self-refer. Even Tthat list is long enough, but not years. Please look into that if you haven't done so already. Aids really do help the vast majority of us.
As is your case, nights are the very worst, both in terms of T intensity, and the lack of rest that leads to a downward spiral in ability to cope. I don't have problems falling asleep - never did - but staying asleep when one's mind is in permanent fight or flight mode due to T is a different matter - and the T invades one's dreams.
My T is highly reactive / catastrophic - so there is no point in a bedside white noise generator or other ambient sounds - even the SleepBand type, that I have tried. Like yours, I can hear my T over TV etc - with which it actively competes. It can, however, be masked by the right frequency of masking in my ear canal. I use wired earbuds in the evenings, which helps, and bluetooth earbuds sometimes during the day.
I am currently experimenting with Soundcore A20 earbuds at night. They work for side sleepers. They are expensive (£125), but less so than the competing Ozlo (£300). My aim is to achieve some low level overnight masking to help with sleep. As I said, this is still an experiment for me, using different masking sounds / volumes, but I have reason to think that it helps and that my protocol may improve.
so far you’ve been doing the right things - seeing your doctor, who will be ensuring as far as is possible that there’s nothing sinister going on. By “sinister” I mean a growth or something, very rare. If you want to see the pathway that a doctor is recommended to follow, go to NICE (National Institute for Clinical Evidence) and put “tinnitus” as a term in their search box top of page.
The aim is to get habituated to tinnitus such that you don’t notice it, or it doesn’t bother you. At the moment you are at the stage when you find this impossible.
Take heart.
Spend some time in the open air especially countryside, where you can hear birds, trees and rain. Breathe slowly and deeply.
There are plenty of breathing exercises you can find to help you calm your mind.
Currently your brain is saying “I can hear something, I don’t know what it is, it could be a lion round the corner, flood the body with adrenaline so that escape is possible”. So training your brain to see that there’s no lion is the goal.
thank you for your replies, I have actually taken in a letter this week to my dr, he asked me to write a statement to describe how this is impacting my life right now. I had a bit of a breakdown with him previously when I was explaining everything to him. He hopes that this statement may expedite my appointment so I hope he is right! I also have a visit to my audiologist at Specsavers booked where I have my hearing aids from and they have told me they will email my readings to send on to the ent too. I’m trying to feel hopeful there’s a plan in place but it’s hard on a day to day ( and night to night) when I feel I’m now not coping well! my aids dont have a masking mode, they are a few years old now. When I first got them they did quieten down my tinnitus for a while and I’d kind of learned to live with it anyway after so many years, it’s this sudden intensity and volume has left me in despair. I am lucky to live near the sea and mountains in Wales and escaping outside does help immensely! I’m going to look at the masking, I’ve not looked into that before and see there are many apps online?
Thank you again for your help and suggestions. It already feels better to have spoken with people who understand how awful this is.
As to the statement you are writing for your doctor, you may know, and your doctor should know that there are several formal, structured questionnaires to assess the effect that T is having on the patient's life. My NHS trust audiologists administer it at every appointment and the record is, of course, added to one's health record. (eg Tinnitus Handicap Inventory Questionnaire). One just sits and responds to a list of questions. I wonder if the Specsavers audiologists can administer one. Just a thought.
Thank you for that information. Nothing has been mentioned to me about any type of questionnaire but I will ask Specsavers and my dr to see if they can help.
I use an earphone and listen to talk programs like LBC. I keep the talking marginally lower than the T and I can ignore the T because I'm more interested in what they are talking about . I also go to sleep with it in my ear. Sometimes I have used the radio but that can disturb my husband. Lots of people use music but it doesn't really work very well for me .
I remember well the desperation in the beginning with T . Then to finally get the appointment with the ENT and to hear these words ...." there's no cure and you will just have to live with it ...." honestly I barely remember anything about the next 3 to 6 months . I drank to excess...did NOT help I played music very loudly on headphones earbuds radio ....did not help I took clonazepam (prescribed) ...did not help i took various other sedating & antidepressive meds meds as well the list is long ....not one of them was helpful
Finally 8 months after onset I was sent to an audiologist who loaned me a phonak device programmed with a masker . Thank God that finally gave me some relief . Too bad it was a little late to prevent me from losing my job my apartment my savings and mind . It has been almost two years now and I've gotten my mind back in order . The rest well .... it comes back or it doesn't. Either way I will keep going . Its a choice and I refuse to give up .
I'm with you on the same journey life with the volume stuck on full. Everything louder than everything else. Permanently makes me look forward to the everlasting sleep. Hopefully rest in peace, because life will never provide any. People often say. "Have you tried meditation, yoga? Errrrm yes have you ever tried doing either of those in a car horn factory? It's impossible.
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