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Reply with quote  #1 

Hi all. I thought I would share my experience of the last 10 months. Since going from almost perfect hearing for 70 years to my present condition, I seem to be fairly unique in that I got a very sudden (and so far permanent) attack of severe Tinnitus, sudden profound hearing loss in one ear and the onset of severe vibrations (Hyperacusis?) in my now deaf ear. So, three apparently separate conditions, but all linked in time elapse at least.

I have pasted entries from my diary of events. Sorry if it goes on a bit, but I wondered if anybody else has had a similar experience. I should add that there was no traumatic event to trigger all this at all.

 04/03/19 Attended Dr. surgery due to 'thumping sound in right ear (Pulsatile Tinnitus?) We went through my symptoms. Dr held a large tuning fork to my forehead and asked what I could hear. I answered noise of fork on left side. Dr. said that confused him! Due to my presentation, he gave me a form to apply on line for an appointment at ENT.

 05/03/19. 1500hrs. Sudden onset of horrendously loud humming/whistling in my head. Particularly on right side. 1900hrs. Put my finger on left ear and noticed I am now profoundly deaf in right ear. I found this quite disturbing.

 07/03/19. Kept awake for long periods during the last two night due to loud tinnitus. Now experiencing tinny vibrations in right ear in sync with voices on TV etc. Have noticed that I can distantly hear sounds like water trickling from a tap, or small fountain in a pond.? Also think I can hear music but cannot determine source. Tinnitus very loud. N.B. Pressure in head feeling has been there throughout.

11/03/19. 1030hrs. Attended urgent ENT Clinic. Checked ears. Carried out hearing tests. Saw Dr. He diagnosed currently profoundly deaf in right ear. Left ear seems OK. They cannot discern a definitive reason, but concerned due to sudden total loss. They do not know if this is permanent or not. Started on course of Steroids. Appointment made for further examination I am also to undergo an MRI scan.

19/03/19.I have now been on steroids for nine days. No apparent improvement to my hearing, and now had intense tinnitus for 15 days continuous, coupled with feeling of general pressure in head. Still hearing music in middle of night.

Tinnitus very loud ringing sound and focused on right side of head. Occasional flashes of mild pain just above right ear. All sounds heard as if I am in a tin can. Getting very worrying. Despite best efforts at staying calm and collected, I feel I am losing the ability to concentrate, i.e. miss spelling words etc on computer.

 23/03/19. Attended for MRI scan today. Now I know how toothpaste must feel when the tube is squeezed.

 27/03/19. Tinnitus just as bad & now frequently getting loud and high pitched vibrations in right ear with medium volume speech (both from myself or others). This affects my ability to hear generally as all sound becomes distorted.

 01/04/2019. 1720hrs. Phone call from hospital consultant's secretary. He has requested that I attend the Emergency assessment clinic at 0800hrs tomorrow for blood tests and the fitting of a cannula, followed by a CT scan of my head!!! No specific reason given other than that my MRI scan was non conclusive. Needless to say, this has somewhat increased stress levels, especially in my wife (who's mum died from a brain tumour!).

 02/04/19. Attended hospital as arranged at 0800hrs. Nurse carried out blood pressure, pulse checks. Took blood for analysis then fitted a cannula to my left arm. I then had my CT scan. This was followed by a 3rd hearing examination in the audiology department (no apparent improvement). I then had an interview with the consultant. The CT scan came up all clear and normal. Due to the lack of any progress and an admission that they have no conclusive diagnosis, the consultant offered me a 'last chance' treatment which involves injecting steroids directly into my inner ear through the ear drum. Following a sleepless night and 7 hrs at the hospital today, I agreed to take the treatment, and opted to come back at 1330hrs on 08/04/19. for the procedure.

 08/04/19. I was given a dose of anaesthetic in my right ear and had to wait 20 mins for it to take effect. I was then injected right through my ear drum with steroid liquid. I questioned re amount as it felt like gallons! The injection was extremely painful. I was then injected a further two times to 'top up' the steroids.

 09/04/19. Spent yesterday evening and last night in absolute agony in my right ear. Tinnitus and resonance much worse. Went to bed early as laying down tends to ease symptoms. This A.M, pain has eased off a bit. I do not think I will want to subject myself to any further injections if offered. (Dr told me last session that he didn't hold out much hope of success anyway)

 12/04/19. No significant change. I note, however, that the symptoms are very much influenced and worsened by the presence of 'outside' noise i.e. TV, boiling kettle, washing machine, more than one person talking, driving etc. Under these conditions, the tinny resonance in my right ear becomes prominent to the point where it overwhelms any conversation and I find it very difficult to understand other people's conversation.

 15/04/19.1500hrs. Attended my appointment at ENT. Protracted & comprehensive hearing test followed by a detailed consultation with a Consultant Otologist & ENT Surgeon. He explained that the hearing loss in my right ear was still profound & that I had ' consonant loss' in my left ear which restricts my ability to comprehend conversation, especially in noisy situations. He does not think a normal hearing aid in my right ear will be of any benefit, indeed, it may make the situation worse! We also discussed the vibrations that I am getting in my deaf ear. He likened it to 'reptilian' hearing. Apparently they don't 'hear' like us humans, but receive just vibrations as a warning of danger etc. He appears to be recommending a trial of the CROS or BiCROS system of hearing aids. Also recommends an appointment for tinnitus therapy in order for me to learn to manage the loud background noise (a separate issue?). I now await appointments for this and with the audiology dept. re hearing aids.

 24/04/19. I think the 'alien' noise on the right side is getting worse. Being anywhere near road traffic is horrendous, in that it now seems to vibrate right through my head. Conversation is becoming harder due to this vibration distorting reception, and perception, of what is being said, even my own voice!

28/04/19. No contact from the Audiology clinic to date. No change in tinnitus. Still very loud. The sensitivity to vibrations on the right side has increased. The 'rolling thunder' that I experience in a car, is really off putting. Unfortunately, I can't open a window due to the vibrations created by traffic etc. in my right ear. If I want to boil a kettle, I have to switch it on and leave the kitchen. I am also experiencing mild head pains around my right temple area, for which I am taking 'over the counter' painkillers. Also getting occasional 'pulses' of what feels like pressure in my head.

 07/05/19. Symptoms gradually getting more acute. Still cannot hear anything through my right ear, although the alien noise is now much more sensitive. This quite severely affects my ability to hold a conversation. The 'pressure' feeling in the right side of my head has increased.

 21/05/19. Attended audiology dept at RSH today. Had another hearing test plus a speech recognition test. Did not do very well at that. Had to cut short the test on my right ear as the 'vibration' was almost unbearable. Hyperacusis was mentioned.

14/06/19. There has not been any noticeable change in my symptoms during the last three weeks, apart from increased sensitivity to noise in my right ear. I understand this symptom to be Hyperacusis, but I am not suffering any severe pain from sounds like I have read up in any research.

15/07/19. I have been carrying out some further research re Hyperacusis. I am now beginning to wonder if that may be a misdiagnosis. I have drawn the conclusion that the symptoms align more with a form of Dysacusis, sometimes called Auditory Dysaesthesia. I will mention this at my appointment at the Hospital tomorrow.

 17/07/19. Got my CROSS hearing aids yesterday. I am now trying to get used to them. The audiologist says that it can easily take a couple of months to adjust to the sound etc. They certainly enhance my hearing but do not, at this stage, reduce the vibrations that I am still getting in my deaf ear. I mentioned my theory regarding Dysacusis,. I was told it may be a good idea to mention this at my next review. Patience is a virtue so enthusiasm reigns at the moment!

24/08/19. Attended for my therapy session yesterday at Audiology Dept. Not much use for me personally, as I apparently have the right attitude to coping anyway!

 06/09/19. It is now 6 months since my hearing problem started. No improvement on my Tinnitus/Hyperacusis since last report. In fact the vibratory sounds have got worse. Sometimes it is so bad that, though wearing my aids, it completely blocks out my ability to hear a conversation with my wife, even in an otherwise totally quiet room.

 List of very noticeable peripheral noises that virtually nullify my aids, and cause severe discomfort, in order of disruptive affect:-

a) Driving/travelling. (Really bad. Can't hear the radio, or conversation over the horrendous noise)

b) Supermarkets/larger shops etc. (Terrible noise. My wife has to be on my left side if she wants to say something. This often makes us laugh as we seem to be dancing around each other, and the trolley, in the isles!)

c) Vacuum cleaner. (have to leave the house)

d) Washing machine (spin cycle in particular)

e) Kettle boiling. (Have to leave the kitchen)

f) Water splashing (showering, urinating etc.).

g) Social 'chit chat ' in or out doors. (Incomprehensible)

I would probably put cinemas at the top of this list, but have not found the courage to try it yet. A few weeks ago I took my wife and grandchildren to the cinema, and had to wait in the car park while they watched the movie!

Can't even think about travelling abroad, due to sound of jet engines. (About half an hour in a car is my limit)

One of the things I really, really miss is listening to stereo music. I have to assume that I will never hear that again!

I also note that it is now taking some time for my hearing to readjust following one of the above interventions i.e. up to 10 minutes following the boiling of a kettle.

 26/12/19. Nearly 10 months now since all this started. Sensitivity to vibrations in my right ear getting worse, although I am still coping with it. Determined not to become a recluse, but it is pretty hard sometimes!

Saw it described recently as BSS, or 'Broken Speaker Syndrome'. Very apt!







Posts: 400
Reply with quote  #2 
First off..Im sorry you are going through this.
Im also sorry that absolutely nobody has even stepped in with any assurance. I am a long time member here that also suffered with some of your symptoms but not nearly as severe. Your case is definitely intimidating to those here that may not share the same plight. Years ago in 2008 ,I was stricken with hyperacusis and used tinnitus retraining therapy by a qualified TRT Dr. (audiologist). I also moved on to my own forms of sound therapy to help re establish my sensitivities.
In the beginning of my plight...many weird oddities also emerged into play. You can read a lot of my posts here such as tinny sounds...reverse sound direction.. inability to perceive sound direction etc. I had a loss of hearing but it was temporary and regained within 24 hours..Sensural hearing loss. I hope you find answers as they may never come. But...keep in mind that these weird anomalys you have can lessen in time by natural or controlled measures. Please find a qualified audiologist who specializes in Hyperacusis . Best of luck and fortune .

Posts: 710
Reply with quote  #3 
My hyperacusis is very different from your experience, though like the saab1216 said it may be helpful to see if sound therapy can reduce the hyperacusis-like symptoms.  I would give it a detrmined try.  See a hyperacusis therapist.
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