Extreme Tinnitus/Distorted Hearing Episodes

Hi everyone,

I would like to share this with you and seek advice and ask if there is anything that can be done to help me.
I am severely deaf since birth and wear BTE hearing aids.

I have always had low tinnitus when I take my hearing aid, out all my life, never once bothered me. But in the last couple of years I have been getting a massive increase of tinnitus and now I get these weird attack episodes that come at complete random and last for days at a time (Usually 3 days before my hearing is reset back to normal and the ringing has subsided). I call them tinnitus attacks. When I get one of these episodes, It is a weird sensation in my head (Similar to a head rush but an auditory seizure) and then it a extremely loud ringing starts in my head and is so loud that all my hearing becomes muffled and distorted. Everything is high pitched, like the ringing.

It is like someone has turned down my hearing and turned up the ringing. It is so loud, I mean really loud, it is all I can hear, and affects my concentration, due to my head being overwhelmed by this ringing. My general speech understanding and hearing becomes distorted and messed up and I really have to focus on what the person is saying as everything is a mess of sounds that my brain cannot process properly. It makes no difference if I have my hearing aid in or out. My ears become so sensitive to sound and it goes right through my head.

I have to ride it out and wait for it to go. So that means I suffer from that one episode all day, from the time it happened and then I go to bed and wake up the next day, and I am still suffering so I have to put up with it another whole day and hope that the next day it has reset. One episode lasts an average of 3 -4 days before I wake up and check my hearing and it is back to normal.

I have no warning or cause anything to trigger them. I have had an episode when having a bath, an episode when driving my car, sitting at home resting on the sofa, talking to a friend, walking down the street, etc… It is so random and it hits me out of nowhere.

It is really is getting me down.

I can go months without an episode (first time I started getting these was in 2015 and I only had 2 episodes that year but now they are getting more frequent and I am getting them every other month now, sometimes 3-4 times in a month.

My general hearing on good days has changed. Some days, voices sound robotic and weird and I can get certain sounds that really cause my hearing to react to it. A bit like my brain has tensed up to that sound, like the sound has caused my brain’s processing of sounds to flinch/react momentarily.

My low background tinnitus is a lot different now and 24/7, I get a droning sound that is really noticeable and sometimes clicking sound that happen in really fast bursts. In general my tinnitus is a lot more noisy and different mix of sounds now come with it.

Not sure if this is related but sometimes I have pressure in my ears sometimes and when wearing hearing aid, it is noticeable that I have pressure in my ears. but I can never seem to pop my left eardrum, when pinching my nose and swallowing. The right eardrum always pops every time. Some days my neck and upper back feels so stiff and tense, It is really noticeable especially the back of my neck can be warm to the touch. Sometimes there is a shooting nerve sensation near my lower neck/upper back.

I am worried that there is something going wrong in my brain where it processes sounds and I have had this since 2015.

You have my sympathy - A_Unhappy_Deaf_Bloke… I think u should go to your local ENT for a check up, as the earlier poster stated there are many similarities with “Meniers Disease” fluctuation in your hearing, distortion, cluster attacks, severe tinnitus; only things that are missing are the vertigo, balance problems, nausea and sickness… I lived with Meniers for many years, so please get yourself checked out, good luck. Cheers Kev.

It feels like something vascular for a strange reason, but I do not know what it it could be.

Hi Meewilson… Can’t truthfully attribute my Meniers cure to anything specific, although I believe there are many triggers, I tended to get cluster attacks which could last up to a week or so at a time… but mainly they lasted a couple of days. I believe the Doctor whom first diagnosed me, he said that Meniers sometimes burns itself out, I guess I am living proof that this can happen! I learned to avoid certain things: salt, caffeine, tea, alcohol and any other stimulants, avoid or try to avoid stress, flying was a big no, no for me! I listened to my severe tinnitus very carefully and eventually I used this as my guide as experience told me an attack was imminent and it was time to lay down and ride it out, vertigo, walls moving, unable to focus my eyes, I would be unable to stand up as my balance would be gone, severe nausea combined with almost unbearable Tinnitus, severe distortion in my hearing… all this was the order of the day and eventually depression reared it’s ugly head, but I held on to that thought that someday it would burnout and fortunately for me it did after approximately 6 years or so, but unfortunately it also took most of my residual hearing with it, but in all truth I would easily have excepted extreme profound deafness just to get rid of the Meniers, it was a living nightmare as the apprehension and stress caused to myself and especially my family was significant and without their understanding I don’t think I could ever have coped as I was unable to help myself as you tend to wallow in self pity, I could not work for anybody, for whom would employ me? We could not plan anything as a family because as soon as we did it would be ruined by another cluster attack… Nowadays I am fine, my balance is occasionally not great, but mostly fine, Tinnitus is moderate, my hearing is in the severe/profound threshold, I have little or no distortion, no vertigo, no nausea and in truth life is sweet… been working full time since 2007 in a mostly supervisory capacity in the last 8 years with criminal justice and yes I am very deaf, but I have adapted and coped well… we are all very resourceful human beings and we will find a survival route, the trick is not to try to run until you can walk, be patient with yourself and you will eventually make it, I am not saying life is going to be easy, what I am saying is you have to fight it and eventually you will win… Good luck, cheers Kev;-)