Anyone Heard of Someone Like Me?

...Or maybe you are someone like me?

If so, I would love to hear from you! Because I'm starting to feel like a bit of an odd case... I realise this isn't a forum of doctors, but I think we can definitely all call ourselves experts in Tinnitus now, so any help/pointers for me would be so so appreciated.

I apologise for the length of this post, but I can usually only get a couple of sentences out with the doctors before they're ushering me out the door!

October 2017, I went to bed with perfectly normal hearing, and woke up in the middle of the night to the sound of ringing in my left ear (like jingling bells). I hadn't been anywhere loud prior to this, but had been listening to my music through headphones earlier in the day. I had also had a flu-like illness a couple of weeks earlier, where I felt so shockingly bad that I called my partner and asked him to come home from a night out. A couple of days before the tinnitus onset, I noticed a couple of instances where my hearing would dip slightly, but then come back up (I still get this intermittently now).

A day or so later, I woke up to find that every time I swallowed my ears would pop really loudly/harshly, and they still do to this day. They don't feel full or anything, just like there is trapped air in there that I can pop if I swallow or move my jaw to the right and sort of push the air with my tongue. It mostly only pops in the left ear.

At first the tinnitus was really loud and I was immediately incredibly distressed by it, to the point where I was referred for emergency counselling because I was a suicide risk. But after a couple of months or so, I found ways to mask it and it dropped down to an almost imperceptible level that I could only hear in quiet rooms.

Then in October 2018 (pretty much exactly a year later) I noticed that the sound was gradually coming into the right ear as well. It started as a kind of metallic sound that I could almost feel between the ear and the neck, and is now multiple different tones that I'm too depressed to list in full. The most distressing is a very high pitched noise that comes in for a few weeks at a time, and rises and falls so that it sometimes can't be masked and is actually very painful. Like zaps of electricity. Then it will disappear for a few weeks. Then back again.

The first ENT specialist said I had slight hearing loss in one ear (gave me Prednisolone but it didn't restore it). However, I think this may be historic hearing loss, as I remember being told I had a loss of hearing in one year as a young child. He also thought it might be TMJ/neck problems (I don't think I have any of the symptoms of it though besides the ringing) and told me to go away and wait for it to go.

MRI scan came back as normal. Pressure in ear tested three times, and found to be normal - not Eustachian Tube Dysfunction apparently, as I suspected it was.

Second ENT specialist thought pressure in ear 'has never been quite right', and advised me to blow up a balloon with my nose to get rid of the popping.

So those are all my symptoms so far. Thank you so much for taking the time to read this - even if I don't get a response, it has helped to write it all down, and when I start my TRT next month I can always take this in with me.

As I say, I would love to hear of anybody who might have something similar - the popping in particular is so odd, and i just can't figure out what it could be.

 

Have you done a recent hearing test? If so do you feel comfortable publishing the results/audiogram in here? (feel free to blank out any identifiable information)

 

Thank you for responding

Yes, I had a hearing test done a couple of months ago; the hearing loss has stayed the same as the first test over a year ago. I don't have the actual results (I will ask for them when I start TRT) but it was very high frequency hearing loss. They say it's pretty mild, just a bit unusual for someone of my age (I'm 29). But as I say, I had hearing loss in that ear as a child, and I don't feel that I've lost any hearing...

 

Your cause of tinnitus has something to do with hearing loss, however their may be an underlying inner ear disorder/disease based on what you said about your hearing fluxating

This is a horrible mistake, TRT holds back research that could lead to curing hearing loss and tinnitus.

TRT literally diverts attention from research for people who need help.

 

How loud were you listening to your headphones?

 

I was afraid it might be. I don't suppose you have any suggestions about what inner ear disorders it could be? I've always thought the same thing, but doctors seem to think my ears look 'normal'.

I understand what you're saying about TRT - I've been reading the forums for a while and I've seen some posters mention this issue. The problem with being this scared is that you'll try anything, especially when authority figures tell you it will help.

What is the best course of action to get people to focus on a cure? I've lost count of the number of doctors who've told me it's my anxiety that's making it worse, and it'll go away if I stop worrying about it. It implies it's our fault for not trying hard enough, or even that we're the ones causing it.

 

Loud, I'm afraid.

I know it could very well be caused by noise, but why the awful ear popping at the same time? Surely that's not related to noise...

 

It is not unusual for T to spread to the formerly good ear, 9-12 months after the onset...

Your T has already faded once, so it can definitely happen again. Have you done anything that might have caused you to get worse a year after the onset? Have you been exposed to any moderate noises or have you taken any medication that might have been ototoxic? Have you continued using your headphones?

 

It would depend on what you mean by moderate I suppose, but I haven't been to any clubs/gigs/loud places - I don't even go to the cinema now. I've definitely not used my headphones since, and won't ever again.

In terms of medication, I was on Sertraline for a little while, but that was mostly when I first got Tinnitus. I'd basically come off of it by the time it spread to the other ear. Now I'm on Mirtazapine, but I started this after the spike to help me sleep. I hope it's OK, because I would hate to try to sleep without it!

Thank you for suggesting it may go back down again - I've been reading through the forum and have found your posts to be really positive and that's helped me a lot.

 

describe the popping please.

 

Ok, sure. When I swallow, there is a loud 'pop' of air. Sometimes it is milder than other times, but mostly it is a strong pop and I can feel the air bursting. When I eat, it is especially painful. My ears don't feel 'full', but I guess there is a big air bubble/pocket in there, because I can 'manually' pop it by moving my jaw to the side and pushing the air out until it pops. Sometimes it pops by itself out of nowhere, and it feels a little clearer in my ear then, and doesn't pop for the next couple of times I swallow.

When I first had it, it would crackle a bit as well, but it is mostly just a strong pop of air.

Hope this explains it ok?

 

do you think it's the little bones in your ear or do you think it's your eustachian tubes not letting you equalize?

 

I don't know anything about little bones in the ear I'm afraid - what would that kind of dysfunction be called?

I thought it was ETD ie tubes not equalising but the ENT specialist tested for ear pressure on three separate occasions and says my ear pressure is fine and it's definitely not ETD. That's why I'm so confused

 

What about things like a blender, food processor, vacuum cleaner, power tools?

It looks like it is ok. In the future, you will want to consult
http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf
before taking a new drug.

 

Hair dryer?

 

Yes, I use a hairdryer. None of the other things. I'll make sure to use the lowest setting on the hairdryer from now on.

I wouldn't have classed them as very loud noises though - I would think it would be really difficult to avoid these kinds of noises in day to day life. And I don't notice an instant spike after hearing a loud noise like some users have mentioned. My tinnitus tends to stay at the same level throughout the day, and get either quieter or louder in my sleep ready for the next day.

Maybe I should get noise cancelling headphones all the same.

 

Thank you for checking, that's great news. I checked with the GP when I was prescribed it, but he wanted to subscribe Sertraline again and I had to tell him it was Ototoxic because he didn't know so I wasn't sure I could trust him!

 

that's actually something I know very little about.

 

I guess if you are not getting any spikes and you haven't experienced a full ear sensation following the use of a hairdryer, it ought to be ok if used on the lowest setting. You can also find some hairdryers being sold that are supposed to be quieter than the average hairdryer.

If a noise like that feels uncomfortable to you or seems to cause any change in your T for the worse, then you would want to do waht you can to minimize your exposure to noises like that. You will not be able to eliminate all exposure, but you can still reduce your exposure. Remember the damage to the ears is cumulative.

The most serious spike I have ever had was a result of me being exposed to a loud phone. The next morning, I woke up to my T changing from a hiss to a high pitch tone that was a lot harder to ignore. So if you notice a pattern of a louder T on the days following, say, your use of a hairdryer, then you might consider experimenting with not using a hairdryer for a while, and seeing whether that reduces the number of the days with louder T. Check out the post below:

 

Hi @Tanni - Thought I'd share a LINK to a video I feel has some of the best images, pictures, illustrations, animations, etc., of the inner ear that I"ve run across. I would have found this video invaluable in my first days of tinnitus when I had little understanding of how the inner ears worked, and how those workings connected with tinnitus. I think watching it could quickly help you get a better sense of what you're dealing with.

I very much appreciated the part in the video where the discussion on tinnitus began (45:38 Mark). Some of his comments included: 1) Tinnitus is essentiallly abnormal activity in the hearing nerve; 2) In tinnitus, the hearing nerve becomes "irritable" and begins to "rhythmically discharge". He also mentions how nerves from our teeth attach to the cheek bone, and transmit impulses to the ears. Obviously, a problem with a tooth or gum infection has the potential to cause tinnitus. -- Do you by any chance have any amalgams or root canals?

His use of the words "irritable" and "irritated" gave me more insight into why tinnitus onset can be so emotionally and psychologically shattering. He mentions that after a certain amount of time, the brain usually comes to some kind of "accommodation" with the discordant rhythmic discharge. If that doesn't happen, then there could be a chronic irritation of the major hearing nerve. As I see it, this in turn would irritate the auricular branch of the vagus nerve; which in turn could irritate the entire vagus nerve. The VN is a major cranial nerve which runs through literally every major organ system in the body, and is the primary orchestrator of the body's parasympathetic (calming) response (it's a master communicator in many other ways as well).

This explains why therapies such as vagus nerve stimulation, cranial sacral work, meditation(s), and other calming techniques can help a number of people with tinnitus. Results vary however, mostly likely because of how seriously irritated the whole system is to begin with. If it's ultra-irritated (as in my case), it's likely going to take longer, with progress being frustratingly slow. This can lead to a time where our bodies and nervous systems are trying to tell us something is very wrong, and we end up starting on a whole new learning curve of how to address those alarm signals the best way we can. Many factors affect how well we do, but I continue to be optimistic that with patience and persistence, I can get my own tinnitus to become a relatively minor factor in my life.

 

Just to mention, there have been reports on this forum of people getting or aggravating tinnitus with this drug. Below is a snippet from THIS LINK. -- Sorry to tell you this.

NEIL BAUMAN, PH.D. says

February 4, 2018 at 7:47 PM

Hi Carole:

Mirtazapine, according to the testing done before it was released said its tinnitus rate was the same as a placebo, supposedly meaning that Mirtazapine doesn’t cause tinnitus. However, a number of people have reported to the FDA database as getting tinnitus from taking this drug. Thus, obviously the initial studies (which weren’t looking for tinnitus in the first place, but just recorded it IF someone happened to mention it) were in error. (Note: initial studies are often deficient as borne out later after the drug is released to the public and reports from users start coming in.)

Actually, Desipramine is much less ototoxic than Mirtazapine (30 to 60 TIMES less ototoxic) and doesn’t cause tinnitus in many people at all. If it is doing the job, you’d be better off on Desipramine than on Mirtazepine from your ears point of view.

Cordially,

Neil

 

I had a quick look and it threw up something called Otosclerosis, which does have tinnitus as a symptom, but nothing about popping so I would say I don't have that.

 

The most serious spike I have ever had was a result of me being exposed to a loud phone. The next morning, I woke up to my T changing from a hiss to a high pitch tone that was a lot harder to ignore. So if you notice a pattern of a louder T on the days following, say, your use of a hairdryer, then you might consider experimenting with not using a hairdryer for a while, and seeing whether that reduces the number of the days with louder T. Check out the post below:[/QUOTE]

I think I'm going to start keeping a Tinnitus diary so that I can monitor it a lot better. I've never really associated my spikes with anything before, so makes sense to keep a check.

Reading your comment above, I never thought to describe the new, horrible high pitched Tinnitus in my ear as a hiss, but that's exactly what it is! It's so painful that my ear burns and itches sometimes from hearing it for so long.

 

Sorry, it looks like I 'quoted' you wrong in my post above - still getting the hang of it here!

 

I have otosclerosis and know quite a bit about it. Did you ever do any test to determine if your losses were conductive vs sensorineural?

 

Thank you for taking the time to post this for me Lane. I'm going to sit down later and read it all properly, but it really resonates with me because I have felt from the beginning that my ears are trying to tell me that something is wrong. The problem is that I don't know what it is! No matter how much I Google, I can never find anything that exactly matches my symptoms.

Funnily enough, I have just been down the dental route after watching 'Root Cause' on Netflix (give it a watch if you haven't already!). I don't have any previous dental work, but they have fitted me for a mouth guard in case my issue is TMJ related (they can see I grind my teeth), and advised that my front tooth is about 7% rotten/decaying. My last dental checkup was a few months before tinnitus onset, so I wondered if this rotten tooth might have something to do with it, but seems unlikely.

I've also been told that my neck doesn't bend right where I've obviously injured it at some point, so this could also be a factor. So many possibilities, but what 'Root Cause' really highlighted for me is how something can manifest itself in one part of your body, but the actual cause can come from somewhere else. The body is all connected. Problem with this is knowing how to treat it!!

 

Sometimes a hiss loses its intensity and high pitch as time goes on (so it goes from a "sss" to a "sh")

 

Oh no

I hope maybe that it's just a case of correlation and not causation? I did a search for Prednisone once and found some people saying that that had caused their tinnitus. All the same, I think maybe I will check with my doctor about using something different. The ideal would be not to use anything at all of course, but that's not really a possibility for me at this stage.

 

No, I would never have thought to ask about that! I just looked the two definitions up and that's fascinating. I thought hearing loss was just hearing loss.

I'm seeing my doctor soon so I will ask then. I assume they will know from the hearing tests I have already done, or is a special test needed?

 

God, I hope so! That's comforting to hear, thank you. I actually hate the hissing tone so much more than the lower tones, which I can mostly mask.