An introduction from a silent reader

Dear all,

I figured today would be a good today to ''show my face'' on this forum.

I have been suffering from tinnitus from the age of 17. It all started with a high pitch ringing that I first noticed when I was doing my homework on the computer. I panicked. I had definitely been to loud parties a few times and I recognised the ringing from the times I'd been to a party. It took me months to come to terms with the fact that I would have to deal with this sound for the rest of my life, but soon I became unaware of it.

Throughout my twenties, I still had the ringing, but most of the time it didn't bother me too much. It became a background noise and certainly didn't keep me up at night. Sometimes though, after a loud event (with earplugs), a long car journey or a cold, the ringing would get louder for a couple of days or weeks, after which it would go back to its usual level.

And then... just before I turned 30, I decided that it was time to celebrate my 20s with a night out with colleagues. I love to dance, so we went to a lounge with a DJ. I put my earplugs in, my noise cancelling head phones over the top, and danced, away from the speakers. I was in there for four hours and felt I was now ready to turn 30. The following day, my T was at its usual levels.

Things were going pretty well in life, both at work and at home. I was keeping fit by cycling to work and had recently taken up swimming.

And then, exactly one week after the night out, I went swimming and put my head under water. That night I felt some water in my ear, but didn't give it any thought, dried it, and went to sleep.

The following morning I woke up with a strange noise in my left noise. This was on July 15th. It was an irregular semi-low tone. It sounded something like this: eeeee-uuuuu-eeee-uuuu. (Just to give you an idea).

I didn't give it too much thought as I'd had strange sounds before and they had always gone. This one though, seemed more persistent. In fact, it became louder and I started hearing it during the day. Strangely enough, it was in the ear that had water in after swimming.

After a week or so, I started hearing 'cracking' noises in my right ear. I started worrying and went to an ENT specialist, who told me I had tinnitus (something I had known for 13 years, but fine) and he gave me a leaflet. He suggested I should see someone to learn how to deal with it.

OK. So now starts the drama. The noises continues to get worse and I could now feel pressure in my ears, they were popping and I felt little pains in them too. I went to another ENT specialist and was sent home for the second time. He told me my ear drums looked perfectly normal and that there was no sign of infection.

I then decided to get away from it all and on August 9th, I went to stay with my parents in France for a week. The night I arrived my T was terrible. The following morning I was tired and scared, and ended up going to a French doctor. She told me I had slight redness in my ears, and prescribed me Prednisolone 20MG and Cefpodoxime 100MG (they do love antibiotics in France!). I took my first dose that same evening and woke up in the middle of the night with much lower volume T. But one day later it was worse again and I stopped taking the antibiotics as I feared they would make things worse.

Anyway... things continued to get worse since that trip and the strange thing is, the sounds of T kept (and sometimes still keep!) changing. The high pitch ringing, however, was (and still is) always there. The flights to and from France were terribly loud (small plane:-/) and despite wearing my ear plugs, I felt my ears were definitely affected by it. I also had terrible pain in my right ear after the flight for a day or so.

This story is getting wayyyy to detailed for you guys, so a little fast forward!!

In the meantime, I've had a CT scan, hearing test was fine (slight ''dip'') in one of the tones, but otherwise fine. Blood work came back perfect, expect for an allergic reaction to dust mites. I was prescribed Avamys nose spray, later Rhinocort nose spray and Desloratadine Sandoz tablets. But of course, after reading a lot of scary stuff about how antihistamines can also make T worse, I stopped using all of it after two days. I've tried just about every supplement I could get my hands on, but nothing seems to have brought any form of relief so far.

Well it's now October 3rd and my life has taking a drastic turn. I practically stopped sleeping, the high pitch ringing is unmaskable, I've lost a lot of weight and can no longer work.

I keep thinking back of what might have caused this new outbreak, but can only think of:

- The night out (I've read on this forum that the T can have its onset days or weeks later).
- A mysterious undetectable infection after putting my head under water.

I'm not taking any medication at the moment, which I think might have to be the next step. Of course my biggest, biggest fear is to make things worse by taking them.

I you don't mind, I would like to ask you a few questions:

- Do you recognise this ''later onset'' tinnitus after a loud event which started with one new sound and has left me with about 4 sounds in each ear? Why would it continue to worsen weeks and weeks after?
- Do you think there might be a link with the dust mite allergy or is that wishful thinking? And would it be OK for me to take the antihistamines? My ears still click and pop.
- Do you have any experience with sleep deprivation literally making T louder or worse?
- Do you have any advice for me with regards to which medications to take (calmants/sleep medication)? I've tried Melantonine but unfortunately it doesn't work. When I lie awake the T just gets louder and louder, and if I wait long enough, even new sounds appear.
- I find it interesting that the Prednisone I took in France seemed to have an effect on my T, do you think it might be worth finishing a course? Or could this also make things worse? Any experience with this?
- Any luck with Betahistine?

For now, my plan is:

- I am looking into the possibility of trying hyperbaric oxygen therapy.
- I have started drinking An Shen Bu Xin Wan tea tonight, a Chinese herb used to treat palpitations and insomnia.
- Trying to get some sleep........ somehow.

Right now I just feel incredibly desperate and have little to no hope that things will ever improve. I'm 3 months in now and from what I read it could be too late for actual reduction in T levels as a result of acoustic trauma.

But I thought I'd ask for your advice and maybe take you on board of my ''journey''!

Thanks so much for reading.

 

Dear Nina,
a therapy based on prednisone (injections) lowered my T after the onset;
in my case, sleeping deprivation made the T worse - or the perception of it, doesn't make any difference, so you absolutely need to take something to sleep, talk to your doctor - as you should see the ENT to start and continue a therapy.
You'll see, your T will improve!
Carlo

 

I don't have anything to add (as I'm new to T) but I just wanted to say that I'm thinking of you and I hope things start to look up for you soon x

 

Dear Nina,
I am in it for about 4 months now. My life has completely changed too. For the first two months I virtually couldn't do anything but read this forum. I could never pinpoint the cause of it to one thing, but I think I have some theory. I have tried Hyperbaric oxygen chamber therapy, only 9 two-hour sessions. The recommended was 15. The ENT told me that it wouldn't work in my case since I had no hearing loss and it works with sudden loss of hearing problems only. However, the HOT doctor has said that they treat all the time tinnitus pacients as well and there's 50-50 chance for improvement. Regarding the timeframe he said that it can work even two years after onset. I am going do the HOT again, the doctor suggested to do at least 10 sessions every six months. It quieted the T alot immediately after the session. For sleep I use Zolpidemi tartras 10mg and sometimes I use mitrazapine 15mg with it. Plus I take ginkgo and zink that seems to help too. I also took Betahistine 16, but I felt no difference and stopped taking it. The first month I thought I would not be able to go on. Reading this forum and my family helped me greatly. Now I am trying to live my life again - with a T. Hope you feel better.
Jay

 

Thank you so much for all your advice and words of encouragement!

Strangely enough, I was able to fall asleep straight away after posting my message (after drinking my Chinese herb tea and giving Melatonin another go), but was woken up by lightening at 2 o' clock with literally screaming ears. The high pitch sound is the worse. The ringing is still bad this morning and I now have another new high pitch sound in my left ear. I'm really wondering what's going on.

Jay, I'm sorry to hear that you have gone through a similar experience. Many thanks for letting me know about the Oxygen Therapy (unbelievable how it quietened your T after the first session!) and also the medication you use. I have an appointment with my doctor this morning and think I might ask for Mitrazapine. I'm scared of using it, but it's comforting to hear that it hasn't increased your T.

Does anyone else have experience with Mitrazapine and could it potentially worsen T?

And Carlo, that's great news about your prednisone treatment having a positive effect. I will definitely ask my doctor about the prednisone Erik, although like you said, it might me too late now. :-/ Interesting what you mention about things getting worse before they get better. I'm just incredibly scared that my brain is, after 3 months, still noticing new sounds and that whatever damage that has been done, is done. I keep waiting for these 'low T days' that are being mentioned, but for now, things just seem to be getting worse.

Has this worsening of T happened to anyone else before it started to get better? Pfff it really is a scary thing.

 

Hi Nina,

If you have access to French consultants because of your parents living in France then this could be something that you should do.

I know that the treatments given in France are different from the UK - they follow through on investigative procedures far more.

I also know of one French lady who was diagnosed with 'crystals' causing her tinnitus. I don't have the details but I do know that if 'crystals' caused my tinnitus I wouldn't even know because the UK system doesn't even seem to investigate possible causes.

I think it could be worth an extended stay with your parents to take advantage of the French medical system - you may at least find out more.

Click

 

Hi,

I strongly support Erick's statement, sleep deprivation and heightened Anxiety will increase the perception of Tinnitus, I am quite certain that Nina'a symptoms will reduce once her sleep and anxiety stabilises.

 

Nina,
Welcome, Sleep deprivation will cause my T to spike and often sleep is the only way to reset to a lower level.
I am paranoid about taking any med. that might increase my T. but realize I must take something.

REMERON seems to be the only thing that will help and not be ototoxic. I slept great last nite but woke up with loud T anyway and became so depressed that I got up and took 30mg of Remeron and went back to bed. The T is a low level now.

I am currently not on any anxiety meds. having not found any that seem to work. Hoping to start on LYRICA shortly.

 

Nina,
The first and best advice that I can give you is do not dwell on the noise. I don't claim to have any answers relative to quieting the ringing in your ears. If I did, I would share them. I had an acquaintance that made himself crazy worrying about it and worrying about how badly he needed it stop. He could not sleep and it is pretty much all he ever talked about. Basically, he allowed it to ruin his life.
It started for me about 3 years ago and my approach has been to keep a positive attitude and not allow it to dictate the quality of my life. I have found that if I keep my mind very busy (occupied).....I mean intensely occupied, I don't hear it. It is still there, but I don't hear it. That is relief that I need. When I am not occupied, and the noise is present, I remind myself that there are pleasant things I must think about instead of the ringing in my ears. I am saying, please try to keep a positive attitude...only until you/we find a cure. You have a life to live, you have a choice to make. Make it a positive one!

 

Dear all, thank you so much for your kind words. I've been having a tough few days and wanted to wait until I felt slightly better, but thought I should write anyway seeing you have taken the time to do the same for me.
Sleep is still a tricky one. I continue to take the Chinese herbs and they do allow me to get a few hours without waking up, but when I do, I hear intense high pitch ringing and all sorts of other noises.
I'm sure we all go through this phase, but I have spent so much time trying to figure out what might have worsened it and all the decisions I made along the way which were probably the wrong ones (not finishing my course of antibiotics, putting my head under water in a dirty pool, going to a loud party).
But I realise that there is no point in doing any of that and if anything, I'm just making things worse with the danger of, like you said David, ruining my life.
So yes, I need to keep a positive attitude! Absolutely. the only thing that scares me is that the high pitch ringing has been getting louder lately and I don't understand what could be making this happen, unless there is some horrible lingering infection somewhere in my middle ear. I went back to my GP again today and explained that I was still experiencing little pains in my ears and that my ears keep popping like mad.
He then agreed to put me on Amoxicilline 750MG and Prednisolone 30MG as my ear drums were still retracted and he noticed some redness in my right ear. Assuming that neither of these antibiotics are ototoxic, I took my first dose today to make sure there any possible infection is whipped out.
Click, thanks for your note on crystals, I had no idea. It seems that this might be linked with Meniere's disease though? Also, unfortunately my parents don't live in France, but they were there on holiday!
So... another piece of big news is that I'm going to give Hyperbaric Oxygen Therapy a go!! I have my first session booked tomorrow. I'm very anxious about its, especially since I don't actually know the exact cause of my new onset AND my ears popping all the time, but I thought I'd give it a go anyway in case the reason IS noise trauma and the slight hearing loss. The fear of making things worse is definitely there, but I hope I will be OK!
I will keep you updated!!
Nina