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Deafness and hearing loss > Recent diagnosis of SSHL - what next?

MarkGritten1
#1 Posted : Saturday, October 22, 2016 9:17:36 AM
Rank: Newbie


Joined: 10/22/2016
Posts: 2
Hello,

37yr old father of 4. Just lost bilateral hearing (110db in both) following ambulance turning on its siren behind me, hearing aids just having been adjusted and volume on max...'wrong place, wrong time' gives the idea of my thoughts now.

History - April 2016 onset of what turned out to be Menieres - vertigo, sickness, dizziness, headaches and hearing loss (30db LH, 100db RH). Off work for 4-5 weeks.

May 2016 - hearing aids (one moulded, one not) and starting to function more normally, but still dizzy, nauseous, severe headaches.

August 2016 - started vestibular rehabilitation physiotherapy (i.e. following printed instructions through with physio who doesn't appear to really know what she's doing). MRI scan of inner ear and full head and neck finds vestibular ischemia (narrowing of blood vessels in inner ear).

Sept 2016 - after repeat vertigo attack late September and subsequent days off work, decided to pause physio as I can't afford to miss work every time I need physio. Work starting to be difficult in requesting paperwork for every appointment I'm attending despite some of them being set up on the phone and no appointment letters being sent through.

Late Sept 2016 - Start experiencing issues related to medication I'm on (Betahistine or Cinnarizine causing this) and having diarrhoea x2 day and up to x3 a week. GP decides to change medication dosage to try and help, but then I start having periods (20-25 mins) of total hearing loss when my tinnitus increases to 100% and blocks everything else out (literally stone deaf). These periods tend to be following loud noises (I work in a secondary school, so not the calmest environment!) but up to this point hearing always returns.

Mid Oct 2016 - go for hearing aid appointment to get 'retubed' for the nth time and after walking out of hospital, ambulance decides to start its fl**ping siren behind me, when hearing aids on max (just put batteries back in) and I'm carry things in both hands. Drop everything to put my hands over my ears, but too late - feel sick, vomit everywhere, fall over and tinnitus increases - short vertigo attack lasting approx. 10 mins. Some people try and help me out but as I can't explain what's going on (can't hear) and feeling so rough, most people ignore me and walk by.

Eventually make my way back to my car and despite feeling dizzy, confident enough to drive back to work (teaching in the afternoon and need to get work sorted). Get back to work, starting to worry that my hearing's still not returned, thinking 'oh s**t'...Still not returned 1 hour later and having to get my classes covered as I can't teach as I still can't hear anything. Tell my boss (typed her a message on my computer screen...) what's going on and she sends me home, saying to go to A&E.

(Consultant's previously advised me after me saying about periods of brief hearing loss, if it lasts past 2 hours, go to A&E)

Tuesday evening, go to A&E and wait 4 1/2 hours to be eventually seen and prescribed Prednisone and an 'urgent' ENT appointment supposedly for the following day.

Next day, ENT secretary disputes what A&E doctor has asked (turf wars) and refuses my wife's (increasingly insistent) requests to get an appointment sorted PDQ. Eventually light at the end of the tunnel and we see ENT consultant on Thursday morning.

Thursday morning, hearing test (bilateral loss to 110db in both ears). ENT consultant prescribes more Prednisone (higher dosage) for a week, repeat appointment in one week. At this point, ENT states 'hearing unlikely to return enough to be workable given how much you've lost'. 'Hearing aids are unlikely to help greatly, but there's no guarantee either way and it's too early to say anything more'.

I'm now stuck in a place where I feel like I've got two pillows held over my head, in a world of my own where I can see what's going on but can't hear anything. My kids are starting to get used to having to touch me to get my attention and are telling their teachers/friends what's going on...bless them. My wife is finding it really hard - she talks to me more than I do to her (she's the chatterbox!) and despite Speech to Text apps on my phone greatly helping, I know it's super hard. What's more, we're in the process of engaging a builder for a house extension which at this point, given my mind's jumping ahead to think 'how am I going to do my job?!' I'm really doubtful whether now's the right time for anything, despite it having taken us months to reach this point with the build.

I'm trying not to think of the worst...really trying...but having been pretty much guaranteed that my hearing's not going to come back to a 'workable' degree, I'm not sure what to do! I'm an Assistant Headteacher so I've got a stressful and full on job as it is, and I'm well aware that there's things going on at work that mean other people having to pick up my responsibilities already.

Just feel like nobody will be able to tell me anything - just take more meds, have an injection or two, possibly cochlear implants...but no idea at all when I can feel back in a place where I know what's next. Just waiting and I'm patient, but not THAT patient.

Anyone experienced SSHL (even better, anyone with experience of this and Menieres?) and able to tell me how long it took you to get some hearing back? I know there's no guarantees, comparison and each case 'presents differently', but I don't mind that - just some idea of what has happened to other people out there and how they coped would help me I think.

Thanks for reading this so far.

Mark
Cornishandy
#2 Posted : Saturday, October 22, 2016 11:40:43 AM
Rank: Pro Member


Joined: 11/10/2011
Posts: 1,873
Woah! You've been in the wars! You are in good hands here, don't worry.
Yes we do occasionally get people with SSHL and we do understand how alarming it is. A little bit of hope... yes, it can and does restore itself to some degree. We have had people come back here and report that they have regained some possibly all of the loss. So be hopeful, you might get lucky.

If you hang around other people will come along and give their views but to me what you have described is largely down to the Menieres. I don't think the ambulance siren was the cause of the problem, I think it was a trigger for existing hyperacusis caused by the Menieres.

Hyperacusis is oversensitive hearing. Hearing aids have built in sound limiting devices so that they can't get loud enough to cause harm. Early hearing aids could make you deaf but modern ones have a limiter, otherwise it would blow your head off if someone slammed a door. So I think the siren was a trigger not a cause. Bad luck though, it's really not what you need!

Action for the future... I think you should ask to see a specialist in Menieres. It is not a very common condition and so your average ENT do not get to see many cases. You are entitled to ask for specialist help and I think you should do that. Don't lose hope, there are treatments and you can be helped to get by, if not make some kind of recovery.
Fiona1
#3 Posted : Saturday, October 22, 2016 7:31:33 PM
Rank: Active Member


Joined: 9/11/2013
Posts: 234
Excellent reply Andy.
To Mark: what a dreadful experience Mark and I understand your problems with coping as I was a teacher also and was diagnosed properly as having Menieres and it's accompanying problems. After several years I was granted early retiral which was a relief.
Good to read you have a wife and kids to help you get through the next few months and I wish you all the best . Stress does not help so do try to relax......I know that can be difficult
Fiona
MarkGritten1
#4 Posted : Monday, October 24, 2016 8:48:34 AM
Rank: Newbie


Joined: 10/22/2016
Posts: 2
Andy/Fiona,

Thank you so much for your replies and for taking the time to respond.

It's interesting to hear that asking for a referral to a Menieres specialist would be something worth pursuing - it's amazing that these extra 'layers' to the NHS aren't made clear and it's only on advice from others that anyone would realise there's something else worth asking about!

You're right in stating that my family are a huge help - can't believe just how much and how lucky I am to having married into a wonderful set of in laws. The difference between the two sides of the family is quite apparent at this time - my in laws happily turning up to help out, be around, be sociable, and my own family asking 'when would be the right time' to come and see us! Not complaining, just makes me smile thinking about it.

It's strange that at this point in time I'm not really that interested in finding out the 'why' behind all of this - what I want answered is the 'when'. Not 'when will be it be sorted out' (although that would be great) but the 'when' I'll have some clarity on what I'm having to face, even if it is much longer term than I want it to be. To not know when I'll be in a place where I can decide on what I can tell work, whether I'm able to do my job or whether we can plan as we have done for the future is the hardest part of it.

I'm also reluctant to go into work, even for a conversation with my Headteacher. She's normally pretty supportive, but I know that a situation like this will lead her to sending me back to Occupational Health (already been once after initial 4-5 weeks absence after first Menieres attack). Occy Health can only say that at present I'm unable to do my job and I'll either (a) be signed off long term or (b) be forced into a situation that I can't confront at this point which is to leave my job altogether. I know that Occy Health are 'there to support the employee', but when the employee can't hear anything and is a teacher (languages teacher no less!) it makes it pretty impossible to see a way forward.

What's more, I love my job and particularly the people contact, the social side of what I do, be it kids or staff or parents. To be in a place where I can't do that any more just sucks (nabbing words kids I teach would use...).

Patience...I know...as it's still early days. Keeping as busy as possible and mind off the million + 1 things rushing through the emptiness in my head. (Keep waking up super early thinking it's snowed heavily outside as everything's muffled!)

Onwards and upwards...

Mark
Marble
#5 Posted : Monday, October 24, 2016 12:04:12 PM
Rank: Newbie


Joined: 4/24/2015
Posts: 3
Very sorry to hear about your situation, Mark.
I don’t have Meniere’s Disease but another vestibular disorder (I had labyrinthitis) and have balance issues, tinnitus and hearing loss. Your hearing loss might be fluctuating, hopefully it will improve.
My balance is greatly affected by stress and I have had help from NHS counsellors for that. The ENT consultant was able to get me this help as well as for tinnitus.
I was a teacher (primary science) and the NUT were very helpful when I had time off work in the last couple of years , returned on a phased return and eventually helped support my application for ill health retirement.
For my last year at work, Access to Work funded Deaf awareness training for my school and also paid for a Communication Support worker to help me in class, to identify where sounds are coming from .I can’t tell as I am single sided deaf.
My head teacher initially was supportive but when HR got involved I was very grateful that I had a union rep with me in the meetings I had.
When it first happened roughly 20 yrs ago, aged 40 with 3 children, I was teaching 2 days a week. I had lost all the hearing in my right ear and I had to work hard on my balance. I didn’t do VRT. I went back to work and I managed to keep teaching, but it was tough and very tiring. I kept teaching for 16 more years.
Hearing aids didn’t work as the loss was too great in my deafened ear but I eventually had a bone anchored implant (BAHA) about 8 years ago which did help alot. This made things so much better. I discovered the BAHA myself, doctors were unaware of it. I read about it in a magazine and thought it would be perfect for me.
I am sure you are looking everywhere on the internet. Don’t forget facebook groups too, the Meniere’s Society have one, VEDA (Vestibular Disorders Association), Hearing Link as well as AOHL.
The Meniere’s society may help you find consultants in your area that are knowledgeable about Meniere’s. They have support groups around the country and may have people who have Cochlear Implants in the group. They also have booklets on VRT exercises.
I do hope things improve for you. Best wishes Hilary

JamesStacey1
#6 Posted : Sunday, March 19, 2017 12:41:00 PM
Rank: Newbie


Joined: 3/19/2017
Posts: 4
Hi Mark (and Hilary),
I wonder how you're getting along now, Mark, almost a year on?
I confess, my question is asked not motivated purely out of concern for you (though I do sincerely hope things are working out well for you!) but for personal reasons.
I, like you, am a secondary school teacher (English in my case), aged 40. Like you, I suffered from vertigo/ tinnitus/ hearing loss associated with Meniere's (though I have still not found a doctor/ENT specialist who is willing to say for definite that it is/was Meniere's). That first affected me more than ten years ago and was very worrying and upsetting at the time. I lost a fair amount of hearing in my right ear, which I never gained since. However, the hearing in the left ear remained fine, the tinnitus in my right reduced to almost nothing, and the vertigo attacks stopped happening - so I got on with life and put it behind me ('life' being family - wife and three kids - teaching, voluntary work with a local church, time out working for a charity for a while, then returning to teaching two and a half years ago). Apart from having to occasionally ask people to repeat something, or explain that I'm 'hard of hearing in one ear', life went on as normal...
THEN - two months ago (end of January 2017), I noticed some hearing loss in my 'good' left ear. As you can imagine, it was hard not to panic. Hearing loss in one ear was one thing, but both would be catastrophic, or so it seemed to me. After some initial faffing about with the GP prescribing antibiotic sprays while the hearing fluctuated (few days good, few days bad), I had a proper hearing test and it was confirmed I had sensorineural loss in both ears (moderate to severe in the long term poor right ear, but also mild to moderate in the left ear) and recommended for hearing aids. It was a blow. I was off work following this (like you I know the struggle with 'feeling bad' as colleagues cover for me etc.)
At the beginning of March, after fluctuating hearing (and fluctuating mood swings from optimism when hearing was better to fear and foreboding when it was worse) I had hearing aids fitted. For the first few days, though odd, it was good and did noticeably improve my hearing But four days later (ironically, the day before I had arranged to go to work to teach albeit a reduced timetable), my hearing went really bad - even the hearing aids didn't seem to counteract the loss. I lasted only three days back at work before going off again. I haven't been back since - a fortnight ago.
The hearing continues to fluctuate, but now a new difficulty has arisen - a kind of tinnitus that is not so much loud as distorting. Sounds are off key (playing scales up the piano keyboard sounds all wrong for instance) - and worst of all, speech is over-resonant and distorted. It makes me really sad that my wife and kids' voices are distorted, almost uncomfortable. I derive a lot of comfort from the love and support of friends and family - but naturally, much of this is through words!..
Anyway, Mark (and Hilary, too, if you're there), my question is - can you offer any hope when it comes to teaching? and the otjer challenges of SSHL? I dearly love the profession - that's why I returned to it. But I'm not sure if it can really be possible to continue if my hearing continues to be so unpredictable (or worsens).
Any words of comfort or advice?
Thanks,
James
Marble
#7 Posted : Monday, March 20, 2017 11:12:55 AM
Rank: Newbie


Joined: 4/24/2015
Posts: 3
Hi James
Just happened to check back onto the forum and saw your post. Sorry to hear what has happened to you. Teaching relies so much on you being able to hear what is going on in the class so you must be feeling very stressed about what has occurred. I wonder if you could get to see a consultant again about your fluctuating hearing loss and get some more advice about how to manage this. The consultant or your own doctor may be able to get you some help with managing the tinnitus and stress too.
The Meniere’s Society will probably have a list of names of consultants who have specialism of Meniere’s – not sure if you have this but even if you don’t some ENT’s have different expertise.
Hearing Link has programmes to help support people who have lost some hearing – maybe there is something you could do if you are close enough to them. The National Association of Deafened people could help too.
Facebook is worthwhile to be able to gain access to more people/organisations that have experience of hearing loss. There are lots of different groups on there which could support you.
To help with any potential issues at work I would get in touch with your union and get some info about how they can support you.
With my hearing loss ( single sided deaf) I cannot tell where sound comes from which makes a classroom full of children difficult to manage. Access to Work paid for a person to be in the class with me identifying where the sound came from and then I dealt with whatever was required. It took a while to get that sorted but it meant that I was able to go back to work again.
Hopefully your hearing will settle again and you are able to get back to teaching. Best of luck ,Hilary.
JamesStacey1
#8 Posted : Monday, March 20, 2017 5:51:45 PM
Rank: Newbie


Joined: 3/19/2017
Posts: 4
Thanks, Hilary, some really helpful leads there.
James
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