Can I push for tests ?

[Tgoaway]

Hi, new to this group but been suffering with this affliction since November & am really not coping. Have to use sleeping tablets at night, any relaxation or masking sounds, no matter what volume, just stress me out as the T is dominant.

Long story but T started out of nowhere, was just sitting quietly watching tv. No history of exposure to loud noises, no stress particularly. Had a huge, heavy bathroom cabinet fall on me in August, but didn't knock me out - don't know how ! - just had a cut between my eyes & a bump on the head for a few weeks. GP & Audiology have dismissed that as a cause.

Saw Audiology last week, to have hearing aids. She did what I think was an eardrum vibration test - should be 50, was minus 200, she said. She asked if I'd had a cold recently - no I haven't. Before that, GP I'd never seen before had been harping on about congestion, told me to use a steroid Beconase spray. Used it for 2 weeks before ENT told me there was no point, but GP found out & told me to use it for at least a month. After 5 weeks still made no difference so stopped it. That was before I saw Audiology. Neither have made any more comment about congestion so why did they even mention it ?

Since the day T started I've had a separate "ringing bells" noise in my head when I shake it. Could that be fluid or "congestion", & should someone be doing tests related to this congestion I'm not even aware of ?

When this started, & when I saw ENT in December, the T was just in my right ear. Since then it can be either left or right or - more usually - both, can be different sounds or volume in each ear. ENT said there's "some" apparent high frequency hearing loss in my right ear (I hear perfectly well) &, after the referral to Audiology for hearing aids, that's the end of it as far as they're concerned, but with the hearing aids being programmed to make up for any loss, am I being naive in thinking they should at least dull the T if "the problem" - ie. hearing loss - has been fixed ? It could - & can - suddenly go by itself very occasionally, just for an hour or 2, but then just as suddenly starts again, no obvious trigger. The hearing aids have made little or no difference (which I will obviously tell them at my next Audiology appointment in a few weeks).

Apologies for length of this but ENT dismissed me as soon as they found the hearing loss & referred to Audiology for the hearing aids, & I really don't know which way to turn now.

[perlcoder]

Hello,

I am just a fellow sufferer (long term now), and I can't address all the issues you raise, but from experience and reading many accounts of others, I can say this:

1. The onset of T can occur at any time. The usual case is to wake with this new noise, but any time and circumstance is possible without any form of trauma or other causative event.

2. The sound of T can take innumerable forms, simultaneously, in isolation, changing over time and more. It sometimes happens that the brain is, as it were, experimenting at onset and that the pattern later settles down, but that is not inevitable.

3. Quite a few people (me) who had measurable hearing loss, were not aware of it. It still needs compensation by hearing aids.

4. Hearing aids are not a cure for T and no immediate relief can automatically be expected, particularly if the hearing loss is mild. Some people do, however, find that they help at once, some need weeks, some find that their T actually worsens for a while, before improving. Persevere.

5. Your audiologists seem to have been very thorough - particularly with more than one appointment and tests that are not, so far as I am aware, standard in all cases of T.

6. The only test of which my amateur self is aware that you have not been prescribed is an MRI scan. This is to rule out the, very rare, possibility of acoustic neuroma. Apparently you doctor does not consider that necessary in your case, but you could ask. If you have the money / insurance you could pay for one I guess. That is obviously something to discuss with your doctor / audiologists.

7. It won't feel like it to you, T is horrible and the weeks / months around onset can be extremely difficult, but I would add that you are still in the early stages. Try to be patient, things do usually improve.

Best wishes.

[Tgoaway in reply to perlcoder]

Thank you for replying, do appreciate it.

Most of what you've said I've seen a lot on Facebook groups & another forum, & I wish that helped. I know a few people personally with this awful thing but each one knows why it started & it's consistent, it never changes so they've been able to adapt & accept. This is anything but, it can change hourly. F'instance, I used the microwave briefly this morning - it went ! For ½hr, then was back. Tried the microwave again. Not that time. Not knowing how - why - it happened is half the battle. For me.

I don't actually think they have been thorough, seems to me as soon as they found this "hearing loss" they've just said "well, that's the problem", end of. They seem to have this "obsession" with congestion, but having used the steroid Beconase for so long plus *not* having had a cold, they've dropped that. I would've thought finding the reason for that & maybe actually sorting it, would be a way to go.

I have *begged* for an MRI. I had hypercalcemia 4yrs ago & calcium has already been found where it shouldn't be. The GP's aware of that but says a referral has to come from ENT, ENT seem to think they've "found" the problem so it's no longer their's. Audiology say I don't fit - "the criteria". I did actually look into a private MRI (can ill afford it) but it looks as tho' you still need a referral.

Had a problem with a nerve start right before this all began. Google says it can be related (I know to take that with a certain dollop of salt, but it gave me hope). GP dismissed it - ENT looked at me like I was from Mars - & will not refer me to Neurology as he says there's a 2 year waiting list. I know someone whose referral took 3 months.

I am trying to be patient, I'm told "it's only been a few months", but as you will know - on a day to day basis, it's HARD, especially hardly sleeping. I'd just like my life back, I can't function like this. All I can think now (particularly at night) is if I can't then I don't want this life. GP knows that, was actually told how I'm feeling in no uncertain terms (I took someone with me 2nd time as he was horrible 1st time I saw him, on my own, & I was too busy sobbing). He wasn't interested, no one is. It's absolute torture.

[perlcoder in reply to Tgoaway]

You are welcome.

I won't say that unpredictability is the worst part of T, because some sounds are almost unbearable, but it is certainly a close second. Mine started in 2000, a very annoying hiss, and always reactive (competing successfully with ambient sound at almost any volume). It was, however, day on / day off - like clockwork without any reason at all for that periodicity. It stayed that way through my work (lawyer) and in 2011 through treatment for Stage 4 Cancer. Then in 2017 it worsened considerably, for no good reason, particularly at night (before then I had been able to sleep reasonably well). This provoked a major crisis. I took Sertraline for some time with Lorazepam as a back up. The crisis went away, but gradually the day on / day off was lost, with "on" becoming slowly the default. In all this time it felt as if night was the test bed for new sounds or deterioration. Even now though, it can vanish for a full day - returning within minutes of falling asleep - never in my life was it hard to fall asleep (10 minutes tops, come what may), but the T can now wake me, and does so often. In my case the key to the occasional daytime vanishing is the need to concentrate on something - almost anything absorbing - but I can't force that to happen - like a fairy or ghost that can only appear when one is not looking for it.

I relate my own experience in that degree of detail only as evidence of the highly variable nature of T, and of the fact that each of us has a unique experience. There are commonalities, but one cannot rely on any other person's life with T as predictive of your own.

There isn't much more I can say, except that I entirely understand and relate to the intensity of your suffering at the moment. Very probably (in my inexpert opinion), an MRI would be negative. Acoustic neuroma has its own typical symptoms (I won't go into them), and your doctors don't think that they are yours. An ENT might see one case per year on average, and in any case you would rather not have the neuroma because treatment can leave the T worse than it was.

I think that you will begin to stabilise and improve when, consciously and subconsciously, you stop looking for a cause or for predictability in pattern. Eventually we all do that, but one cannot make it happen.

Again, Best Wishes.

[EarHealth2024]

welcome to the bare facts of Tinnitus there arnt any. ENT don’t know and neither do audiologists. Same has happened to me and I’ve tried lots of things. I do find hearing aids help a bit, but I know your pain and frustration.

I’ve had it come on unexpectedly since April 2024. I went through months of extreme worry and fear and have only now accepted it and every day decide I’m going to get on and try not to focus on it.

[Rumana2025]

I do hope you find some relief.

I had a hearing test and all clear. I used eardrops for the wax. I'm waiting for my audiology appt which is end of March.

I'm new to this ailment and thought I could beat it, but it's been 2 months now!

While waiting for the appointment, I've started yoga, following Dr. Mandell's daily suggestions religiously on Youtube, practicing meticulous bedtime hygiene—something I never had to do before—supplementing, and I’ll resume cold water swimming next week, which might help with a factory reset for my body - the colder the water the better; it helped enormously with my sciatica.

I'll keep trying different things. I don't hate the ailment because it's part of me and I am in my early 60s, so part of wear and tear maybe? I'll also give acupuncture a try, that too helped with my sciatica, so it might help here.