Tinnitus since 1990

[wdbirk]

Found this site while searching for information for a new device to reduce tinnitus.

My ENT tells me my tinnitus is caused by otosclerosis. The T started as only a very faint hum and has gradually increased in loudness over the years. I have had two episodes where it had gotten so loud, it was as if it was my first day with tinnitus and I was ready to jump off a bridge. Normally, my T is about equal volume in both ears, which I think has allowed me to cope with it. On those bad days, the sound changed and the "direction". I perceived the sound as coming from my left and from the rear. It was as loud as a low flying jet (what I remember a low flying jet sounding like). So, I go to the ENT... it had been nearly ten years since my last visit... to tell them of my new situation and get some relief if possible. Mind you, I clearly explained that I'm an experienced T sufferer and I'm about to lose my marbles... The response I got? Try some ginkgo?!

I didn't try the ginkgo. I was so damned mad it took my mind off the new T sounds. My normal T resumed in a few weeks, thankfully.

The struggle that I have with T is that family and friends have no clue what it's like. My wife left the room shortly after hearing the audio clips of typical T sounds just before I started to write this. We discuss it maybe once every 6 months. She usually listens but just blinks her eyes till the subject changes. But to get a response from a professional audiologist that T was somehow banal and not of concern? I think they should have some experience with T by putting some earbuds in and listening to T sounds 24/7. Just one week. That's all.

Anyhow, I might have a slim chance at reducing or eliminating my T with surgery to fix the otosclerosis. (Replacing the stapes with a prosthetic) I haven't had the courage yet. There is a chance of complete deafness with the surgery and balance issues etc. Hearing with T is better than no hearing in my book.

If anyone reads this far... thanks for allowing me the rambling rant.

 

[DezDog]

Hi there wd.

Good to meet you.

Sorry to hear you're suffering, though. I hope you can find the support here that you're lacking elsewhere! I'd like to think your audiologist was in the minority; my encounters so far have been compassionate (GPs, audiologists, specialist and therapist) and understanding. God knows I must have looked pathetic and tested the patience of a few of them. I hope you can find some alternative help. Even just talking about it helps, I find (and I'm *not* a talker!!)

I know nothing about otosclerosis, but it seems as if you have a physical reason for your T. I expect there is the "usual" perceptive part that makes it worse for you; I hope you are able to make progress in dealing with it and get back to enjoying life (perhaps you do already - in which case, good for you!)

All the best
DD

 

[calin]

Welcome wdbirk!

Most of us here can certainly empathize with the going out of one' mind due to T!

You will find all sorts of treatments and remedies that most of us have discussed, tried and set aside. Then again, there are other treatments that some of us are being guinea pigs for. If a treatment can at least diminish the T low enough for daily tolerable limits. I think that is what many of us want. Just a measure of relief.


There is a member here named Karen who has your condition - otosclerosis. She will jump in here in a day or so I am sure.

Hope that you find this forum gives you hope and some comfort.

 

[Karen]

Welcome to Tinnitus Talk, W.D.!

I'm sorry you had a bad experience with your ENT. It is surprising that he/she would recommend gingko biloba as a first choice treatment for otosclerosis.

I have been told that I have otosclerosis, too. I've been to two ENT's and three neurotologists, and all have said the same thing, so far. I'm also suffering from both ringing and pulsatile tinnitus, and the doctors have sent me for various tests (MRI/MRA, CT scan, and carotid artery scan) , all of which turned up nothing to explain my pulsating tinnitus.

The neurotologists did suggest stapedectomy as an option. They also suggested trying a hearing aid, which didn't work out that well for me.

Right now, I'm trying to find tinnitus/pulsatile tinnitus relief with natural remedies, before I would consider going in for surgery. I agree that the risks may not outweigh the benefits for this type of surgery.

Have you been to a neurotologist yet? These doctors specialize in otology, but with neurological training. The doctor might be willing to spend more time with you and your particular case, and suggest other options. It may be that your ENT sees many patients and didn't take the time to find out more information about your condition.

We welcome you to Tinnitus Talk, and hope that you'll look around, and read some of the latest information about tinnitus research. There's a lot going on, with maybe some new possible cures on the horizon.

Also, there are some tinnitus clinics out there now, in various large cities, that may be able to spend more time with you, and offer other options. I wish you well; we're here to help and support each other!

 

[wdbirk]

Thank you all for the very nice welcome. I apologize for the late response as well, I am new to forums of any kind and had been watching for an email update on the replies. I did get yours DD (thanks for the encouragement) but not Karen's or DezDog.

I had some regret after my writing my post after it dawned on me that there are many folks here who may be new to the T. experience. My post sounded rather hopeless and bitter. I apologize for that.

 

[wdbirk]

Welcome to Tinnitus Talk, W.D.!

I'm sorry you had a bad experience with your ENT. It is surprising that he/she would recommend gingko biloba as a first choice treatment for otosclerosis.

I have been told that I have otosclerosis, too. I've been to two ENT's and three neurotologists, and all have said the same thing, so far. I'm also suffering from both ringing and pulsatile tinnitus, and the doctors have sent me for various tests (MRI/MRA, CT scan, and carotid artery scan) , all of which turned up nothing to explain my pulsating tinnitus.

The neurotologists did suggest stapedectomy as an option. They also suggested trying a hearing aid, which didn't work out that well for me.

Right now, I'm trying to find tinnitus/pulsatile tinnitus relief with natural remedies, before I would consider going in for surgery. I agree that the risks may not outweigh the benefits for this type of surgery.

Have you been to a neurotologist yet? These doctors specialize in otology, but with neurological training. The doctor might be willing to spend more time with you and your particular case, and suggest other options. It may be that your ENT sees many patients and didn't take the time to find out more information about your condition.

We welcome you to Tinnitus Talk, and hope that you'll look around, and read some of the latest information about tinnitus research. There's a lot going on, with maybe some new possible cures on the horizon.

Also, there are some tinnitus clinics out there now, in various large cities, that may be able to spend more time with you, and offer other options. I wish you well; we're here to help and support each other!

Karen,

I have not been to a neurotologist and have never been given the suggestion. I think I need to find a different ENT! I will look into that further.

I am getting to the point where hearing aids are a necessity, the otosclerosis it catching up to me. My age and occupation are certainly no help.

Thanks again for the kind words and warm welcome.

 

[Karen]

Hi, W.D.,

A question: What does your tinnitus sound like? Is it a high-pitched ringing? Any swooshing sounds in the background? I'm jus curious as to whether yours is something like mine, due to the fact that we both have otosclerosis.

Since you wrote, I did try a hearing aid again. The newer ones are pretty amazing, and I tried out one that is a combination hearing aid/tinnitus masker. I didn't purchase it, but if all else fails, I may go back to that as an option.

Please write again and let us know what you end up doing. I'll be interested to know if you do decide to go with hearing aids.

Also --- your ENT may not have been so far off course when he/she suggested gingko biloba. There is a newer, more absorbable type that seems to work for some people (please see Erik's post about GingkGold. It has an ingredient in it that makes it highly absorbable).

Good luck, and keep us posted on your progress!

 

[wdbirk]

Hi Karen,

The sound I hear is a humming and hissing sound. I don't have any swooshing sounds.

I am about ready to try hearing aids. I was at a party this weekend and my hearing loss is getting to the point that I am stressed out by concentrating so much on what people are saying. Or I avoid conversations entirely. Any particular models/manufacturers of hearing aids you can recommend?