Should I seek a further examination/diagnosis?

Hi everybody. This is my first time on this site, and I just can't decide which forum to post this message on. If anyone thinks there's a more appropriate board, please tell me and I'll re-post it there.

Apologies in advance if this becomes a long post, because I want to include all the info people here might need to assess the problem. But my basic question is: should I seek further diagnosis to see if my tinnitus might be caused by some 'mechanical' issue, by which I mean sinus infection, Eustachian tube problem, muscle tension - in other word, anything non-neural? I'm asking this because I'm still hoping that, if it is 'mechanical' rather than neural, it might yet be curable.

I'm asking this question here because I suspect I haven't been given a very thorough examination yet - but being a layman, I don't know how thorough an examination should be.

Anyway, my story:

I'm 60 years of age, and live in the UK. In the 1990's I had mild high-pitched tinnitus in both ears. It was like the sound of an old-fashioned CRT monitor. It worried me so much that I posted a question on a a tinnitus newsgroup. Well, after a few months, I noticed it had gone, and I was fine again for years.

Then in February 2012 I again got this noise, but much louder, and this time in just the left ear. It's a very high-pitched sound, right at the top of my frequency range, and so high that I can't be sure it's one frequency or several. The noise does have a very slightly 'fizzy' quality, so perhaps it isn't just one frequency.

I noticed at the time that I had a feeling of 'fullness' in that ear, and an urge to swallow hard to try to clear the sinuses, Eustacian tube, and whatever cavities there are in the head on that side. I also noticed that if I swallowed, the noise would get momentrarily louder. A few days later I noticed that if I swallowed really hard, the noise would actually vanish. This only worked now and then, though. I also noticed that if I swallowed, I could feel what seemed like a thick substance being drawn out of somewhere on that left side and oozing down my throat. I should also mention that I've had sinus trouble most of my adult life, especially the kind that gives you toothache in your upper teeth (I think I've had unnecessary tooth fillings because I mistook this for a dental problem).

Anyway, I took all of these signs as hopeful ones, because I figured that tinnitus caused by something like this might me treatable, so I got myself referred to my local ENT department. It was a very dispiriting experience.

First they did a hearing check, and found my hearing to be normal. Then they syringed my ears - there was a pea-sized lump of wax in the left ear. Finally, I was shown in to see the consultant, who wasn't the person I'd been sent to see (as I said, I live in the UK, and if you have to use the National Health Service, you're usually told you'll be seen by a certain named colsultant 'or a member of his/her team'. So you might get a top expert, or some assistant). Anyway, this man wasn't the one I thought I'd be seeing. He asked me only a couple of questions, including 'does it keep you awake?' and when I said it did, he just said I should keep my radio on. That was that - I'd only been in the room 5 minutes.

I told him that I thought it might be sinus-related - mentioned how swallowing sometimes made it go away - and he looked doubtful. He then shone a torch up each nostril and into my mouth, then just shrugged. Then he referred me to the 'tinnitus clinic' where he said I'd get counselling, advice, etc. When I told him I thought he would try to find the cause of the tinnitus, he just said, "Well, tinnitus isn't something you can see". I left feeling very low.

So then I did some online research and it seemed the best ENT place in the UK is the Royal National Nose, Throat and Ear Hospital, in London, so I had myself sent there. I was given another hearing test - again, normal - and then sent to be seen by a doctor. Again, I wasn't seen my the person I was sent to see, but by one of his team. She asked me about dizziness (checking for Meniere's Disease, maybe?) and got me to follow her finger with my eyes. She put an instrument into each ear - I think she said this was a pressure check. She asked me if I felt stuff going down the back of my throat, and I said yes, I did. Then she said she was sending me for an MRI scan to see if a tumour might be forming around the auditory nerve, but assured me that this was very rare.

Her mention of an MRI scan made me think she was going to ignore everything to do with sinus infection, Eustachian tube issues, all the 'mechanical' stuff (if you see what I mean) and just assume this was a purely cerebral, neural thing, and therefore untreatable. So grasping at straws, I told her about how the tinnitus seemed to be associated with this feeling of fullness, how swallowing increased the volume and even seemed to make it disappear on some occasions. But she just said something like, "No, I doubt if it's anything to do with that, because sinus problems vary all the time, so you'd expect the tinnitus to vary as well". I wanted to discuss this a bit more but she wasn't interested. And that was the whole consultation. Now I'm waiting to go for the MRI scan.

One very important point I should make is that this tinnitus very often goes away completely - or at least, it's at a volume that's so low that it's only just audible. Often I'll be walking somewhere, or busy doing something, and think, "I haven't noticed it for a while - is it still there?" Then, because I'm a pessimist, I immediately assume that it is still there, and that the only reason I'm not aware of it is because my attention has been elsewhere. So then I stop what I'm doing and listen very carefully for it. And it's definitely gone. Then I quickly go about my business to distract myself from the dread of it coming back. Yesterday was a good example. It was away all day, then in the late evening, as I was sitting in front of the computer, it started again. I was definitely aware of it starting - I didn't just suddenly notice it was there.

Anyway, to cut a long story short, I've been hoping that all of the evidence above might point to my tinnitus being caused by something actually outside my brain or my auditory nerve - something medical science can 'get at'. I know that if it isn't - if it's neural and nothing else - then there's nothing for it but the long, weary road of trying this or that chemical/herbal/homeopathy/Chinese medicine remedy (probably all 'snake oil' but I'll have to try them), and the various 'retraining' treatments such as TRT, neuromonics, etc. But the success rate of all of this stuff seems so depressingly low that I don't want to go down that road until I'm sure there's no chance that it isn't caused by anything that conventional medicine can treat.

And so I'm posing this to ask people's opinion. From what I've described, have I had a thorough enough examination and been given an adequate diagnosis?


Thank you for reading this very long message.

 

Hi MisterD.
You and I are about the same age, so I thought I'd jump right in here. Just reflecting on my own experience with tinnitus, it was a long learning process. I tried perhaps most of the things you mention:
- Ear drops (There's a sucker born every minute)
- Lipoflavanoids (Fool me once, shame on you. Fool me twice, shame on me)
- Mirtazipane (great for sleep)
- UST (don't ask)
- Acupuncture (eh)
- Fasting (anybody need some extra conconut oil pills on my desk?)
- Messaging my ear with an electric toothbrush (they call this "Alternative Treatments")
- Tinnitus Tamer (actually a nice little tool)
- Making my own MP3 files (good therapy)
- Purchasing hearing aids (the best thing for me)
+ Other ongoing experiments.

There are two resources that I found to be the most helpful:

• TinnitusTalk. This website has a lot of knowledge which you may not be able to find elsewhere. Interesting discussions. We're all on a journey here, tying to find the Holy Grail of how to fix tinnitus. It may be the blind leading the blind, but that's better than nothing. A good place to get your thoughts together - and rack up those message counts.
• "Tinnitus Retraining Therapy" by Jastreboff and Hazell. By far the most important reference on tinnitus that I've read.

The problem that you will find is that there is little consensus about the cause of tinnitus. After 42 years, the ATA hasn't made an official decision about what is THE CAUSE.

However, what is well understood is the neurophysiological model of tinnitus, which Jastreboff developed in the 1980's. That's explained in the above book.

Here's a link to an excellent paper which gets to the heart of the matter:
http://oxfordlearning.org.uk/westbe...ationswb/pdf/A/L_Waite_GP talk powerpoint.pdf

I'm happy that your's sometimes goes away. Mine is also pretty light on the Richter scale. Nevertheless, if you are a "listener" like I am, it's annoying. I think this has a lot to do with how much people analyze sounds in their conscious thoughts.

The goal is "habituation". Typically this takes 18 - 24 months for the brain to restructure (through neuroplasticity) so that the tinnitus sound becomes a non-issue.

 

Thank you very much for that very thoughtful reply, Karl

I'd really appreciate anyone's thoughts on my main question though: should I seek a further examination/diagnosis?

 

Your doctor should give you several routine tests to determine if there is a physical cause for your tinnitus: They look for inflamation of the inner ear, excessive wax. They look for ear disorders such as acoustic neuroma, eustachian tube dysfunction, pulsating tinnitus. Most of us get an MRI to check for abnomalities, such as a brain lesion.

For a small percentage of people with tinnitus the cause of their tinnitus can be identified and can be treated through medicines and surgery.

However, about 95% of us have "subjective tinnitus", which is something that accompanies hearing loss. Hearing loss can be be due to age, ototoxic medicines or exposure to loud noise. Be sure to get an audiogram. If your audiogram shows hearing loss at the tinnitus frequency that you hear, you have subjective tinnitus.

Another bunch of people have "somatic tinnitus", which is somewhat different than subjective tinnitus. Sometimes people with TMJ, neck injuries, and hard-to-determine reasons get this. It seems to involve different neural pathways than subjective tinnitus. The end result - noise - is the same, but the noise is different. If your tinnitus seems to vary from day to day, changing frequency, sometimes going away, if it can be varied by clenching your jaw - then you may have somatic tinnitus.

I have read that some people have gone to as many as 30 specialists trying to find the "right one". In my opinion, most of the medical community does not know how to treat tinnitus. In fact, some physicians are downright discouraging. There are a few scientists/audiologists/physicians who seem to understand it better than others.

Learn as much as you can. The more you learn, the less mysterious your condition will be to you. In the beginning it can be very confusing, creating a lot of anxiety. Don't expect changes overnight. Stay positive.

 

Karl,

I'm new on the forum so I'm picking up posts here and there, I hope you still read or get messages cause I see this thread is from 2011.

I think you are touching on some interesting strategies to T and I needed to read that myself. I'm just a month into my condition and I'm also interested in going to new medical visits to get "a better answer" - perhaps I'm just hoping for "the right" answer that will be the lifesaver. However, the more I read and research the more I find rehabilitating my brain to accept the signals to be one of the best paths to walk. Of course I'm hoping for the magic pill but I so agree with you that most ENT "experts" are not very understanding or clever about T. I've been chocked about the lack of interest from the so called medical expertise and I've been to three doctors so far.

I also want to disagree a bit when u write that 95% have T cause of hearing loss, I don't think thats correct. It seems to be very common to have the condition with no hearing loss at all, like myself for instance. My hearing test wasn't perfect but it was quite okay according to the ENT surgon. He never said the results was bad and many ppl. with no T has much worse results according to him. I also want to say that somatic tinnitus doesn't necessary come with the things u described - "If your tinnitus seems to vary from day to day, changing frequency, sometimes going away, if it can be varied by clenching your jaw - then you may have somatic tinnitus." I don't know this but by reading up on it it doesnt seem like this has anything to do with the type of T. (?) I'm very interested in finding the cause of my T and I have this inner feeling that its because of mental trauma and severe stress etc. My T sound is very high pitched and some times it varies in strength and volume, for days it can be so loud that I'm just in chock, and some mornings it can be lower, but it does vary like that with people that has a severe hearing loss as well?

Any comments to that?