My First Year with Hearing Loss and Tinnitus (Positive Story)

It all started a year ago to this date. It was just a normal Monday morning, I was sat at my desk doing some work then all of a sudden I heard this screeching ringing, I asked if anyone else could hear it and no one could. Within minutes I was being sick and was extremely dizzy so went home. I called the doctor who said it would be a blocked ear and to apply heat and rest. As the hours progressed I could hardly stand and couldn't stop being sick so I went to the local out of hours hospital who advised me my ear looked fine and everything would be back to normal in a couple of days. The next day I was even worse so went to see my duty doctor. I was so embarrassed in the waiting room, crying my eyes out because of the noise, couldn’t stop being sick and could hardly see where I was going/stand up due to the dizziness. My duty doctor advised me I had Labyrinthitis which was a viral infection and would probably last for around 2 weeks then I would be completely back to normal. Even though I felt horrendous I felt a wave of relief as I knew I would be back to normal soon.

Those two weeks where hard but what kept me going was the thought of getting better. Toward the beginning of the 3rd week my symptoms had nearly gone, all apart from the ringing. I felt concerned as the ringing hasn’t gotten any quieter and hadn’t stopped at all since it started; I also started to notice that the hearing in my right ear wasn’t as good as before I got poorly, in fact I could hardly hear out of it at all. I went back to the GP who advised me it was probably a middle ear infection and got me an appointment with the ENT. I was still hopeful at this point that I would make a full recovery.

The day came for my ENT appointment and I went into the appointment with the view that I would have my ear drained any everything would be fine… That was NOT the case. I came out of the ENT in floods of tears, shaking and feeling physically sick. The ENT had told me I had permanent profound hearing loss in my right ear and that the tinnitus would be a lifelong thing. I could literally feel the hope drain from my body as he was telling me my results. I can’t explain in words the effect that this had on me emotionally, I had never felt like that before. I completely shut down and went into a state of despair. It sounds really silly looking back on it now but I had never ever felt so low in my life! I kept thinking about how I would have to listen to this ring 24 hours a day 7 days a week all the time! Also the fact that I was now half deaf… it just not something you expect to happen to you especially after just having a cold that turned into a bit of a virus. I was also a healthy 23 year old, so young to have lost half my hearing!

From that day on I was calling the doctor pretty much every day crying until they put me on Diazepam to try and calm me down, i spent every waking hour searching the internet for a cure, looking at forums and just making myself worse by not accepting it, but I couldn't it was too soon to accept that this had happened I wanted the hope back that I originally had from my first appointment with my GP. I signed up to clinical trials and joined every forum under the sun. I didn't want to go out, I didn't want to see my friends, I didn't want to eat certain things or take certain medicine in case it made the tinnitus worse (I had read online things like certain crisps and Ibuprofen made the tinnitus worse) I just went into a complete meltdown, I was completely depressed. This went on for a few months.

I then had my first Audiology appointment where I had TRT (Tinnitus Retraining Therapy), I cried the whole way through and just kept asking will it go what I can do to stop this ringing! I came away from that appointment with a white noise generator (like a little hearing aid shaped device that played white noise into my ear to try and stop my brain from focusing on the Tinnitus) it was useless, I hated it, I thought people would look at my funny for having what looked like a hearing aid stuck in my ear. I used it for about 2 days and then never used it again; I didn't want to have to rely on something like that to the rest of my life. I was so low, and so depressed. I was a complete mess.

One day something happened, I don't know what it was but I just woke up and for a second I couldn't hear the ringing, I know it definitely hadn't gone but I think it just wasn't the first thing I thought of so for that moment I didn't hear it. It was amazing, I felt so so so hopeful and from that moment I just started to feel a bit better. People said it took years to accept Tinnitus and start moving on so I really felt proud that just for a moment I felt just that little bit better.

As the weeks went on I started feeling a lot more “normal” again. I was arranging things with my friends, eating what I wanted, watching telly again and most importantly I STOPPED TRAWLING THE INTERNET FOR A CURE! That’s my strongest piece of advice DON'T keep looking on the internet, once I stopped that I felt so much better, it’s like I had learnt to accept this had happened and not keep looking for false hope. The more I got back to doing normal things the less I thought about my Tinnitus until the point where I didn't hear it all day long, don't get me wrong it was and still is to this day very loud and intrusive… but only when I'm thinking about it like I am now writing this. If I was watching my favourite soap or having a conversation with my friends then I wouldn't hear it unless I thought “Oh where’s the ringing gone” then I would hear it again. It’s so hard to describe but because my brain was focused on something else it just didn't acknowledge the Tinnitus as something I should be focusing on/a threat on therefore I just didn't hear it even though it was there. I had read about people that also experienced this and called it “habituation” I never ever thought that I would reach this stage. To have tinnitus and not hear it, what a crazy thought but yet within 3 / 4 months I had habituated to the tinnitus.

Once I had habituated to the tinnitus that’s when I really started to notice the effects of my hearing loss. The labyrinthitis had killed the hair cells in my inner ear, these hair cells carry different pitches of sound to the brain and then the brain interprets them into words/actual sounds. Because these hair cells don't regenerate, like your skin does when you get a cut, and you can't operate on the inner ear I have been left with permanent profound hearing loss on all decibel scales to my right ear. Basically I'm completely deaf in that ear; all I can hear are mumbles of sound that bounce off my ear drum. I found it increasingly difficult to hear people in crowded places, if someone was talking to me on the right side I found myself zoning into other conversations that people were having to the left of me because my ear/brain couldn't pick up what was being said to me from the right. I also found (and still do find) that certain noises/songs/places give me a kind of beeping noise in my ear, this is where my brain is basically having an overload of sound and it can't cope with it, this really upset me to start off with because all I could hear was beeping, I couldn't drive 10 minutes down the road without hearing the beeping all the time, because my job involves a lot of driving this really did upset me. Losing my hearing was stressful but not as stressful as the tinnitus. I thought if I could tackle that then I could tackle hearing loss. Firstly I found myself being thankful that I wasn't completely deaf, I could still listen to music, talk with my friends and lead a normal life. I'm currently in the process of having a hearing aid fitted but because of my type of hearing loss it’s really hard to find one that will help me. I also try and help myself by sitting to the right of people at large dinner parties and walking to the right of people so I can hear them. My family and friends have been amazing and most of them remember that I can't hear and will automatically walk to the left of me.

Sometimes it does get hard; because you can't see/hear tinnitus/hearing loss other people don't understand how difficult some days can be or think there is anything wrong with you, but as long as you explain to people what you are experiencing they usually are really understanding and accommodating.

I just wanted to write this post to advise people that are in the same position I was a year ago it’s not all doom and gloom, yes your tinnitus might not go away but like me writing this post now, I can hear it but I'm not bothered by it one bit. Maybe 1 or 2 days a month I'm bothered by it for a bit but in the grand scheme of things I'm doing very very well leading a pretty normal life. Since having Tinnitus I have been on holiday twice (on an airplane), I've still been on nights out to bars and clubs, I still relax, I still do everything I did before getting Tinnitus and I still enjoy all those things just as much. I hope that if you are reading this and you have Tinnitus or hearing loss this may have given you just a little bit of hope.

It’s unlikely I will be visiting this forum again but I want to thank all those members that helped me when I was finding things really hard. I'm more than happy to speak to anyone that needs support or has any questions. My email is – Catherine-clifton@hotmail.co.uk or find me on Facebook - www.facebook.com/caff.clifton

Caff xx

 

Great post!!!! Give us all newbies hope that we can overcome T abs live our normal lives again!!!! Thanks!

 

Very encouraging success story for the newer sufferers indeed. It is amazing that you come so far from being so low with intense suffering to now being normal, all within a few months. That should give new sufferers hope for their future. Thanks very much for coming back to share your success story. Take good care.

 

Thanks Caff - great post! I've had T since puberty (so almost 40 years). It sounds (pun intended) like you are well on your way to learning to live again. Keep your chin up, the days that you wake up and "forget" about it happen more and more frequently!

 

How can i chat with the community with this app

 

@HAMZA what app are you using? On the desktop website there is a section to chat, just click CHAT on the top banner.

Would be interesting to know if you could access TTalk on an app

Caff

 

@caffclifton

Thanks for your great post!

I'm pretty used to my T after having it for 16 months but it is hard when other people cant understand because they can't see that you have a condition especially at a young age because I don't know anyone who is 23 in my area and has the condition! But this forum is great to speak to people who are going though the same thing!

 

Hi @Rachiejo, I completely agree because you don't look like you have anything wrong with you people don't seem to understand. I find that it's quite hard to explain though as everyones T sounds are different.

I was watching Emmerdale the other day with my partner (i'm not sure if any of you watch it either) one of the characters was hit by a car and the show played the sounds that this character was hearing it sounded just like one of my T noises, i kept playing it over and over to my partner so he could get a glimpse of what i heard day in day out.

His sadness for me made me feel a little bit sad but only for a few moments after that u carried on watching telly and forgot all about my T again until bed time.

Yes this forum is great for connecting with people that just get your situation and how your feeling.

Im based in Oxfordshire but travel the country a lot with work if you ever need to chat or fancy a TTalk Coffee chat

Keep strong x

 

@caffclifton

I don't like to tell people about my T apart from family cause I don't want people to feel sorry for me cause I think then it makes it worse and I don't have a boyfriend so that makes it hard to meet anyone cause I'm afraid to tell them!

I live in Devon if you ever travel down here? I could add you on Facebook? X

 

Got to love Devon! I <3 Devon Cliffs.

 

@Rachiejo yeah I am in Devon sometimes. Feel free to add me

I find I have to tell a lot of people I have meetings with as sometimes when they are takin I can't hear them so I don't want them to think I'm rude haha! X

 

@caffclifton could you tell how much hearing have you lost across various frequencies? Audiogram would be perfect

 

@Xorthian I am pretty much deaf in that ear I have very very mild hearing on low pitches but have no speech recognition at all. For some reason I wasn't aloud a copy of my audiogram. Next time I go to audiology I'll ask for one again [emoji4]

 

Ohh okay no need, you just explained how brave you were during this year and how much i can look up to you as example. I understand it is severe loss.

I agree with you that trawling for cure doesnt help. Having hope thst there will be is good and healthy but in the end we have to accept reality as it is and not live with hopes that lie so much in the future we cant even see it clearly.

 

Aw thank you [emoji4] yes having hope for a better day is far better and more realistic than looking for an immediate cure x

 

@caffclifton - Hi Caff. just discovered this forum yesterday, and noticed your post today, and it partly caught my attention as you are in Oxford, and I am not many miles away in Abingdon. I wondered if you'd been to the JR for your ENT appointments? With "Choose and Book" these days we can (sort of) go anywhere, but I thought Oxford would be the easiest (despite my having heard some less than positive reports).

My history is a bit different to yours, but I can strongly sympathise. It's pretty tough to be hit by bad hearing loss and tinnitus at a tender age. I'm 65 now, and was (I think) in my early 40s when tinnitus struck me, almost certainly as a result of an ear infection, and possibly (probably) exacerbated by hard wax build up. I didn't really notice a hearing loss at the time, but eventually I had a hearing test, and it showed up high-frequency loss in both ears (not just my "tinnitic" ear), which surprised me. They said this was not normal at my age then, so I presume it was the ear infection that caused it.

The hearing loss was (thankfully ) not enough to affect my everyday life, but of course, the tinnitus, as we all know, affects the quality of one's life. I don't think the internet, as such, had really got going at that stage, but where I worked was connected to the UK academic network, and indirectly to that of Europe and the USA, and there were things like mailing lists and Usenet and some other tools that one could use to find online information, and for a while, I used to search and search to see if I could find any help or information about tinnitus cures. When the web proper came along, for some years, I continued this search until one day I realised that the more I did this sort of thing, the more I thought about my tinnitus, and the worse it (subjectively) got, so I stopped. I figured that if any major breakthrough came along, I'd read about it in the newspapers!

And that's more or less how it's been until relatively recently. However, I'd always had a fear in the back of my mind, well, two fears: a) That my tinnitus would get worse and b) That I would go deaf (my father became very deaf in older years). Well, fortunately, (a) didn't happen, although over the last 5-10 years, I have noticed my hearing getting worse, and actually, was kind of psyching myself up last year to get a hearing test with a view to hearing aids.

However, then fate stepped in and at the end of last year I had what felt like the worst cold (or cold + flu) of my life, and in a short time, I seemed to have lost most of my hearing in both ears. The T also went up several notches. For logistical reasons I wasn't able to get medical help for some time, but eventually I saw my GP. She gave me Amoxicilin and Beconase nasal spray, and also organised for me to have my ears syringed because, as once before, I also had an ear wax build-up.
(If I had known what I know now, I would have insisted on an emergency referral to an ENT - doh. Actually, I would have done that a lot sooner, logistics or not - double doh).

I didn't have much faith in the Amoxicilin or the Beconase, but actually I think they must have helped, because I did gradually recover at least some hearing (and it improved over the coming months, though never to its former level). I was also megadosing on Vitamin C.

By the time I finally got to see an ENT (months after the original event), my hearing had improved quite a bit, although still not to its former level. He managed to suction out more wax from both ears (despite my having been syringed twice by my GP's nurses). This didn't help hearing but it made my tinnitic ear feel less "full".
He couldn't see any sign of infection at that point in time, and thought as a precaution I should have an MRI scan.

It took a while for the MRI appointment to come through and in the meantime we had a (very exhausting) translatlantic holiday, and (as I often do after air trips) I caught a cold. It didn't seem too bad, but even so, it seemed to set back my hearing in both ears. Not to the same extent as at Christmas, but bad enough. A few days after we came back it was time for my MRI scan. I saw the ENT 3 weeks after that and he said that they could see "congestion" (he didn't say where exactly, and I didn't have the gumption to ask, but I assume in the middle ear and probably Eustachian tubes. He didn't prescribe any medication, but did talk about the possibility of grommets, and also hearing aids. In the end we mutually agreed to try one hearing aid and see how it went, and I have an appointment for it to be fitted in a couple of weeks.

In the meantime, I have gone back to researching on the internet, not so much for tinnitus, but for hearing loss, and specifically how to try to deal with the "congestion" that I seem to have, and it was while searching on how to clear blocked Eustachian tubes that I found this forum (and a couple of very relevant and interesting threads).

I think my congestion has in fact improved somewhat since I saw the ENT, and my hearing is slightly better. With luck it will continue to improve and I've learned about some accupressure techniques and other tricks that might help.

Having said that, like you, I (almost certainly) have dead or dormant hair cells in my cochlea that are responsible for at least part of my hearing loss and (probably) my tinnitus. I have not totally given up hope that these are recoverable, but for the moment, I have to proceed on the assumption that they are gone, and try to do something about things that possibly still can be helped, like the eardrum-middle-ear-Eustachian-tubes, and also try to keep infection and inflammation at bay. (Oh, almost forgot, the MRI scan seemed to show some possible nerve damage (well, thickening), which might account presumably for both the tinnitus and some of the hearing loss...hmm.)


Anyway, I think it's very mature of you to not be desperately searching for an instant cure. However, you are easily young enough for there to be some progress on hair cell regeneration (or replacement) in your lifetime, so stay hopeful, and in the meantime, good luck with your hearing aid. Might bump into you at the JR hearing-aid clinic one of these days!

Cyfarchion cynnes,
Best wishes,
Mike

 

Hi @MontmorencyTT
I actually go to Audiology in Reading. I had the choice between Oxford or Reading and was advised my by ENT (at the circle) that the Reading audiology department where a lot better.

(Sorry for the short reply not very well at the moment so having a very early night)

Thanks
Caff x

 

Gosh, thanks for the quick reply!
Actually, someone told me that Reading was better before I booked (online), but it was looking as though I'd have to wait longer, so I went for the "easier" and slightly sooner option.

(Not sure what you mean by "the circle" though).

No need for apologies!
Hope you are feeling better soon!

Best wishes,
Mike

 

The circle is a private hospital In reading. They see some NHS patients when then NHS are too busy. The ENT I saw was there. He was really abrupt but he was the one that recommended reading

Caff x

 

How's everyone getting on with their T at the moment?

 

Not so good , but coping

 

@uae96 What aspect is troubling you most today. You can reach out to any of us here at Ttalk for support.

 

The volume has gone up a bit not sure why , the sound is like in my head more than my ear doing fine in the day but worst when I wake up or go to sleepD:

 

I usually find that mine is the quietest in the morning as im well rested and the noise reaches its peak by the end of the day (that's only when i notice it though, usually my brain is occupied with other things) Can I ask do you have anything to help you sleep at night. I usually have a fan on every night, i don't think is "helps" as such but i think physiological knowing the fan is on helps me to sleep as my brain is focused on other noise and doesn't see the T as a threat.

 

Hey @caffclifton o/

Just Saw you audio-gram this morning & re-read your first post here. How are you coping at the moment, still good I hope?
My tinnitus also happened out of the blue & took me completely by surprise. I was at first angry, upset but then eventually, after months of thinking about the impact it will have on my life & the lack of support I too became very numb & depressed, not seeing anyone or doing anything much like you. I've threw away the pills I was given to me for my depression & have learned not to 'try' so much at taking my mind of it but just letting it be. I've found this much more effective ^_^
I've recently had an appointment with a private ENT & had my hearing checked again, with a slight loss in the higher & lower frequencies in the right ear, although only slight. He mentioned the the use of a small hearing aid to help with the 'balance' issues that come from only having one ear that's not so good, waiting to hear back from them to discuss it.
I'm really glad you've had a lot of support from friends & family, I know lots of people that haven't & it makes a real difference!
Hopefully being on TT doesn't make it worse because I think a lot of people can take from your story & find a lot of inspiration from it, I for one certainly have

All the best.
J.

 

Hi @Kopesy, thanks for your kind message.

Yes I am doing very well thanks

Im glad that you are trying to just "get on with it" i have always found relying on something takes away your control over the situation. I'm still trying to phase out having my fan on at night but to be honest i had it on all night before having the T anyway so im not too worried about relying on that.

Yes i have had alot of support, its been hard for family and friends at times because they can't see or hear the T its hard for them to understand but they have all tired very hard and i cant thank them enough.

I will be popping on TTalk every now and then just to post the odd encouraging message and help those that need it as others did for me when I first had this. You hear so many horror stories online but not many of the good as people forget to come back and share their story.

If i can help just a handful of people feel positive that will make me very happy.

All the best for the future

Caff x

 

@caffclifton bad to be honest. Only meds getting me through a day and night. can't mask. can't sleep. wish I was coping like you.

 

@Markl how long have you had your T for and how was it caused.
Accepting and habituation to T can take a while but I am more than sure that you will get there one day. I know it's hard to stay positive x

 

I am looking for positive stories. I am 43 and have been suffering with T for nearly 2 years after a bad ear infection - same thing happened, my audiologist says the cells were damaged and just last week she gave me the news that it is PERMANENT. I guess I was in denial thinking I was going to get better. I am going to try a hearing aid to try to help with the hissing/buzzing. I am SO hopeful that I will habituate but after that audiologist appt. I feel really down. I saw he a year ago and my hearing was not nearly as bad. It has gotten much worse. I can hear sounds and voices with the left ear but can't make out the words they are saying.....
I appreciate your story, I hope i can get used to this and be happy again. Did you ever try the hearing aid?

 

@Ms Sandy I really hope that now you have been given a diagnosis this will help you come to terms with the fact its permanent. I think that's what did it for me, I lived in hope for so long and once I realised it was permanent that's when i could accept it. 2 years... that's along time not to have clarification from your doctors!

I did try a hearing aid but I didn't get on with it. It itched and I didn't get any sound benefit from it. Plus i had habituated by that point so felt like I didn't need it.