Does Everyone Else with Tinnitus Experience Things I Do? And How the Hell Do You Cope/Manage/Sleep?

Hi All

I have just joined up.

For the past 5 years I’ve been visiting the forum reading other people’s posts and stories which has helped, particularly when I’ve been down. However, I think it’s gotten to a point now where I just don’t know anymore and probably need to talk to people with tinnitus and share my story to see what they think and say.

I am particularly curious if others with tinnitus experience the things that I experience (which I’ve written towards the end of this discussion) – because some of the things I’m experiencing are really making me start to question if what I have is really tinnitus.

This is going to be a long post, but I want to try and paint a good picture of everything. Sorry in advance that I’m not very concise.


So, five years ago, in Sept 2013, I returned home after living on my own for 7 years. I’d just finished studying and the relocation back home was meant to be a brief one (i.e., max 6 months). The plan was to get a job and then set myself up again in my own place once I’d secured a job.

After returning home, I had a few colds over about the first 4 weeks. I started Amoxil and the cold went away, but then it came back so I took Augmentin. I also noticed that my left ear felt like it would close up inside, then my heart would beat and eventually my ear would pop and feel like it would open up – and this whole process would just repeat. I also noticed that when people were talking to me on the phone, my left ear would crackle as they talked. The hardest thing about being back home was that my sister had had children, so there were 2 young nephews crying and screaming all the time. I found myself being woken up every morning by the screams – and sometimes I had only just gone to bed 3-4 hours prior. On the day before (so Sunday) that my ‘tinnitus’ started one of my nephews was chucking a screaming tantrum and my left ear just crackled and popped away. I should probably add too that I did have 2-3 ear infections as a kid and that I’m guilty of scratching/rubbing inside my ears with my index finger when they get itchy.

Anyway, 8 weeks after being back home I went to bed one night (sothe Monday) and I heard this noise. I thought the noise was coming from within the wall and that it was a water or gas pipe squealing. I couldn’t sleep at all and I didn’t get to sleep until 9am Tuesday morning. Tuesday night the same thing happened – I could hear the noise and couldn’t sleep. Wednesday, I went around the house looking for the noise but couldn’t find it. Over the next few days I found myself struggling to sleep even in the day time because I could still hear the noise. After a week I was convinced that the noise was something at the house so I went and stayed in a motel. Excited, I blocked my ears at the hotel and said ‘ah, peace and quiet’ and that was when I realized that there was a noise in my left ear (or head).

I went to a GP and they said it was nothing to worry about and that it would resolve itself. 3 more GPs said this over the course of the next 4 months before I ended up saying I want a referral to an ENT which then took 6 months to get in.

I told the ENT that I had a noise in my left ear and he said we needed to find the cause so he ordered hearing tests, bloods and an MRI. The bloods were all normal except my ESR was 32, my hearing was all normal and good (but I noticed that they said there was a slight high frequency asymmetry though it wasn’t clinically significant). The MRI (and subsequent MRI’s I’ve had) said there was moderate right & mild left mucosal thickening of the maxillary sinuses and patchy opacification of the ethmoidal sinuses. Mild right mastoid air cell opacification and a small amount of fluid in left mastoid air cell. Otherwise nothing to account for the noise. The ENT said he had no idea what was wrong and referred me to a neurologist.

The Neurologist did more hearing tests, and wondered if it might be a Spontaneous oto-accoustic emission (SOAE). The ABR and hearing tests were normal and it did say I had an SOAE in my left ear but then the neurologist said that was nothing to worry about. I was a little confused because the neurologist was suggesting that the SOAE was the noise but then someone else was telling me that an SOAE just means your ear is healthy – which had me wondering then if there was something wrong with my right ear. The neurologist told me that I had tinnitus, there was no cause and that I had to learnt to live with it and use maskers to help me sleep. I was already trying different things to try and sleep without any success so the neurologist trialled some different sleep medications but they didn’t really help.

Anyway, a year went by and I decided to get a part time job to see if I’d be able to work/handle work, and see whether or not I may need to look for a night shift job instead – as any sleep I was getting was only of a daytime. I worked, but I was operating on hardly any sleep, and after a year I just got fed up and felt even more tired and frustrated. So I went back to another GP who ordered another MRI which just said I had fluid in the mastoid air cells/spaces on both sides. The GP referred me to another ENT who then ordered a CT scan that showed the same results as all the MRI’s I’d had. The ENT said that he might have to treat the fluid to see if that made a difference, but then he decided not to and just advised me to try a diet without caffeine, try Serc and Glngko Biloba which didn’t do anything.

Another year passed and I found myself in the same situation. Just plugging along, not getting any sleep and no better. So I went and told my GP and said what am I meant to do. They referred me to another ENT who used a camera to have a look up my nose and they said that I had a patulous left eustachian tube (i.e., my left ET was wider than my right and vibrating), but then they said they couldn’t be sure that that came first or whether it was caused by me doing the Valsalva maneuver (which I was doing so much daily in some hope that it would help). They also ordered a CT scan and bloods, and the bloods were all normal and the CT scan said I had mild chronic right mastoiditis. The ENT suggested that I try a nasal solution to try and help glue my eustachian tube closed – but it didn’t really do anything.


So at this point, I’d had ‘tinnitus’/ the noise for 4 years. I’d had 2 MRIs and 2 CT scans and the only thing that I kept seeing come up was fluid in the mastoid area which every doctor said was nothing and not causing the noise/tinnitus, and sometimes there would be mild sinus but other times this would be all cleared up. Every hearing test too that I had showed my hearing to be good/normal.

Since the tinnitus started I decided to have annual hearing tests, and this year when I saw the audiologist and explained all this stuff that I’d noticed over the years to them they said ‘I don’t believe that what you have is tinnitus’. I was speechless when I heard this, because over the years (and like everyone else in posts say) I’ve always been told my problem is tinnitus. However, I’ve been researching tinnitus a lot and have started to question whether my noise/problem really is tinnitus. Because I started to learn that by definition, any subjective noise is defined as tinnitus. For instance, I hear my heart beat (which doesn’t bother me) and always have – well that’s pulsalite tinnitus. I’ve walked out of a night club (only about twice in my whole life and over a decade ago) and had that ringing sound that everyone says they get which then disappears – but the sound I’ve had for the past 5 years even though I describe it as a ringing is nothing like the tinnitus/ringing that I experienced on those two occasions walking out of a night club which everyone describes as ringing. Some people even say that when they just hear nothing which sounds like a microphone on (or an old tape player without a tape playing) they describe that sound of nothing as tinnitus – I hear that too but that’s nothing like the noise I’ve had the past 5 years. Below I’ve pasted some sounds that are nearly identical to what I hear (though a tuning fork is very close to it, or just run your finger around a glass of water). I should probably also say that I myself get ‘tinnitus’, meaning I still get the odd high pitched whistle or low static sound or weird cricket sound for like a second or a minute which then goes away, but this other sound that I have (and have had for 5 years) is constant and always there and overshadows all the other brief 5 second/1 minute tinnitus sounds that I get which only happen maybe once a month anyway.

Vacuum Cleaner Sound and Video 3 Hours -...

(2:18)

how to make noise with a wine glass

(1:58)

Noisy gas meter

Chime Sound

(0.13 & 0.19) when sound lingers

300 Hz Sine Wave Sound Frequency Tone

700Hz - Sine Wave Tone

The audiologist I saw this year said that from what I described to him (which I’ve number below) he thought I had an acoustic neuroma but then he said obviously I don’t given all the scans so he said he has no idea what I have. However, he said I should see another ENT and tell them everything that I told him (which is all the numbers below) because I use to just present to doctors and just say I have a noise. I did see another ENT and mention everything to them and they said its just tinnitus and nothing to worry about. LOL.


So the things that I’ve noticed over the past 2-3 years, which are the things that I told the audiologist and which I am also wondering if other people with tinnitus experience include:

1. When I yawn the noise/tinnitus will increase significantly in volume in my left ear/left cheek area as my mouth opens wider and then it will decrease as my mouth closes.

2. If I stretch while I’m lying in bed/on a couch it will cause the noise to become louder – very similar to what happens when I yawn.

3. If I scratch the inside of my right ear and jiggle my finger around in it, it will cause the noise on the left side to become louder.

4. Before the noise if I looked under a bed (with my head in the upside down position) there was no noise and I would just feel the pressure in my head and my heart beating. However, now if I look under a bed (with my head upside down) all I’ll hear is the noise and it will get louder and louder then decrease as I lift my head up.

5. When I’m in the bathroom with the bathroom fan on, or if I am in any room with an air conditioner or ceiling fan on it will make the noise louder (and the noise will become a bit more ‘bell/ringing/tuning fork’ like, and sound more external/distant). When it rains the same thing also happens (which never use to) the noise gets louder and it’s almost unbearable – there is just this constant hum/buzz sound.

6. A cold/flu will make the noise much louder – it will just feel like a low hum/buzz.

7. I’ve done the Valsalva maneuver (VM) many times and I still hear the noise continuing even when I do the VM.

8. If I suck my ears inwards/breath inwards then the noise will become very loud in my left ear like someone blowing a flute hard and loud (like a foghorn sound), so I have to pop my ear (blow my ears outwards) to lessen the noise.

9. My left ear drum/middle ear never feels right. Sometimes it feels hot and sore and sometimes it’s as if the noise can hurt my ear and feel like my ear drum is being stabbed by the noise. For example, if I lie my left ear on a pillow, it’s like the sound has sharp pierces every now and then that feels like the sound or some sort of soundwave is giving me an ache or piercing my ear drum (it’s as if the sound gets turned up for a split second every now and then – or its like someone blows hard into a flute in a blow/stop/blow/stop format, though sometimes it can just be long loud and continious). Sometimes I also swear it feels like there is soundwaves/heatwaves passing through my ear canal that are not travelling through smoothly and like I’m feeling the vibrations.

10. There is always a lot of crackling in my left ear. I only have to breath, move my mouth, or talk and it will crackle.

11. I always use to feel like I could feel & hear everything with my head & face, like I was clear and my head was empty – not now. I’m not sure if this has to do with pressure.

12. A lot of the time I don’t feel like air is travelling through my ear/head properly. For example, when I do a small burp/hiccup with my mouth closed, the pressure goes out my right ear but not my left ear. I also feel like I can feel the air travelling through my right nostril to right ear, but not my left nostril to left ear.

13. Sometimes I feel like the noise I hear in my left ear prevents external sounds from being even clearer, but there have been times when my left ear is completely clear and the tinnitus is still present.

I guess the main things that I’m curious about are:

· Do other people notice that fans and air-conditioners make their tinnitus worse/louder

· Does their tinnitus become louder if they put their head upside down

· I have unilateral tinnitus and I can not sleep on my left side ever, and even when I sleep on my right side the noise can still be heard (just not as bad, but its still loud). Do others with unilateral tinnitus experience this

· It doesn’t matter whether I’m stressed or calm, my tinnitus doesn’t change and it doesn’t get better or worse

· Do others still hear their tinnitus during the day time? Doctors look at me weird and say it should be masked by the day noise but I can still hear it

· When others yawn does their tinnitus get louder – I use to yawn and hear nothing.

* Is others' tinnitus really loud, like to the point that of a night time that its like living next to a highway and hearing the cars (even though i know some people would say they habituate to that and eventually don't hear it).


I’ve spoken to probably half a dozen people that have tinnitus. They all tell me that they get use to it, that they can get off to sleep and that it doesn’t bother them. Well I can’t seem to knock out and get off to sleep because the constant noise (like a mosquito that keeps annoying you) prevents me from dozing off and getting into a deep sleep. All the people I’ve spoken to always seem to have some sort of hearing loss or hearing problem, and its as if what they say is all textbook stuff (which I know fits with tinnitus) but most say they don’t notice their tinnitus unless someone brings their attention to it and that stress makes their tinnitus worse. For me, my tinnitus is just loud all the time so I can never not notice it and only notice it when someone brings my attention – that’s not possible because I always hear it. And being calm/relaxed doesn’t quieten mine down like others report.

Anyway, I’ll leave it here. I’ve gone on and on about everything. I guess I’m just wondering if others are experiencing what I’m experiencing and questioning/wondering. Or better yet, if anyone has any idea what might be going on with me. At the moment, as much as I’m questioning whether I have tinnitus, I’m also starting to concede too that maybe what I have is and I just wonder then if anyone else is having difficulty sleeping and managing.

Thanks for taking the time to read this post if you did, and i really hope things for you are going okay.

 

Lots of stuff there. Sorry you are being bothered and obviously you are a detailed person trying to make sense of the possible causes and effects. It's a real shame the medical community can't be more helpful, even diagnostically.

I'm in the ~9 month and mine is a fairly variable, from ringing to cicadas's sounds, to static or like a leaky steam pipe. I saw you points 1 and 3, the yawn and finger probe business, and after month 6 I did a little bit of investigation in those areas. I think maybe my Eustachian tubes have a slight blockage. Occasionally I could get them fully open and the T morphed a little. The finger tips in the ear....I was investigating tmj interaction, which for some people is a major contributor. For me, it was not significant to the T.

All for now, good luck!

 

@tin2013 Thanks for the detailed information. It does appear that chronic right mastoiditis was present where infection has somewhat spread. I'm surprised that your ENT didn't have you hospitalized to treat the fluid with IV antibiotics, then I guess that I'm not. What he finally decided to advice you to do below is worthless.

Some infection may have spread to various places that could include the facial nerve, numerous veins and muscles. It doesn't appear thru all of this that meningitis or other more serious conditions has NOT developed. I would consider discussing IV antibiotic therapy with a confident doctor. Antibiotics for your conditions are just not going to work unless it's by IV.

Just make sure - real sure that any antibiotics used are safe for hearing/tinnitus.

Just my opinion to discuss with your doctors.

 

Some people on this forum have a slight dip on the audiogram and notice music sounds like broken garbage.

There could be massive damage to synaptic ribbons within cochlear hair cells and it won't show up on a tonal audiogram, because complex noise is different from soft tonal noises.
http://hyperacusisfocus.org/innerear/#hiddenloss

The test they use for hearing loss has strong evidence against to show it is outdated

 

Thanks for the replies.

I’m sorry to hear its been 9 months for you PortalNaut. In 5 years no one has ever mentioned TMJ or investigated that, so I’ve decided to book in with a dentist and pursue that avenue. God i just have one constant loud sound, i don't think i want even try to imagine what it must be like for you to have different sounds - i'm sorry to hear that. So yawning made it louder for you too?


That is exactly what I was thinking too Greg. I just can’t believe none of the doctors (specialists or GPs) won’t treat or at least rule out and eliminate the fluid, because I always think you never know it could be the fluid that's causing it. They always just say to me they doubt the fluid would be the cause - and i always just think but you cant guarantee that. I have a follow up coming up with the last ENT I saw and I think I’m just going to ask if I want to be treated for the fluid can I ... and see what happens. I also ask about IV.


Gez, thanks for that info Contrast – and the link. I had no idea about that difference which you mentioned in your post. One time my GP was looking in my ears and when he pulled out that instrument which they look in your ears with it had a light pale yellowish/white liquid on it, and he said to me ‘what the hell is that’. Someone mentioned to me at the time that it could be lymph fluid or some sort of leak which could be causing inflammation and hence a ringing - I see that the link was talking about leaks. I think I need to follow this up further. I ‘ve always wondered too if any scan exists to look at your hair cells – probably not. I’ve even been thinking about asking if its worthwhile having a MEG or EEG, because I read somewhere that these can identify where activity is occurring in the brain – I don’t know may be they could show something unusual.

I asked the last ENT if my nephews screaming could have done any damage/caused it and he said no. The noise has to be higher than 85db and basically a jack hammer, jet engine or loud music. I was reading up though in journals that kids can scream above 85db and that some paediatricians have gotten tinnitus from their occupations. Funny thing is if i showed the ENT that he'd probably say its wrong or it doesn't matter -- a GP once said to me if it was due to my nephews screaming than every parent would have tinnitus.

I'm even starting to wonder now if stress (maybe even depression or anxiety) could have caused the tinnitus and maintained it. Cause i guess i was stressed (and maybe a little anxious or down) just before i got the tinnitus, and then when you get tinnitus you're just so frustrated because you can't sleep and hear silence that you probably become even more stressed and then depressed and anxious and that may maintain it.

Since i've had tinnitus i've really started thinking that people with tinnitus or pain have it bad - because the two just affect sleep so much. And i just can't believe that a fan, air-cond or running water/rain makes my tinnitus louder.

Lately i've also been wondering does everyone else with tinnitus work full time/part time. I tried full time and fell to pieces - got really sick cause i couldn't sleep. The best i can manage is part time 3 days per week.

 

What are peoples thoughts on TRT - tinnitus retraining therapy? does it work? is it a waste of money? do you need to go to a psych to do it or could you do it yourself. All the Drs just recommend this. I made enquiries but they its just psychoeducation about tinnitus and then relaxation strategies.

 

Hey the variety of sounds to me is a sign that I am adjusting the auditory circuits, and doesn't bother me. The changes are slow. As to the tmj, I just want to point out what I found, that when closing the jaw you can feel the hinge acting on the front of your ear canal if you have your fingertips facing forward. I have messed around with opening closing my jaw and feeling that hinging action when T was loud, but it didn't change anything. As to yawning, it always changes pressures in the ear/tubes and for me usually helps the T go down a little.

 

total waste of money, holds back bio-medical research that could soon cure us.

audiologist shill for it.

 

Give yourself some time, looks like you're busy rushing from one doctor to the next, hoping one will give you anything to cling on to that isn't tinnitus. The fact is that you are willing to risk a procedure that might make your tinnitus worse. Let time do its thing, there are so many horror stories on here regarding bad ents and doctors experimenting on people's ears and making their T worse in the process. Remember these people are there to make a profit off of you.

 

Hi All (posters and viewers)

I just had a follow up appt with the last ENT i saw - i decided to keep the follow up because i just wanted to ask about the TMJ, treating the fluid and basically why they said i have tinnitus after everything i told them (so how they concluded it and how they're sure).
So no TMJ, and apparently (which i didn't know) ear infections leak fluid into the mastoid, and if you've got patulous ETD fluid is likely to leak to the mastoid as a result -- so to me it started to sound like everyone gets a bit of fluid if they've had an ear infection ever and everyone then has a little bit of mastoiditis. So my couple of ear infections seem to be linked to the fluid i have.
I Was told that a small amount of fluid wouldn't cause the noise i experience and that the issue or problem is with the auditory cortex and that's why masking isn't really working for me.

Not sure what to think of it all - the only message i seemed to really get/take away was that its my brain/the auditory cortex and it doesn't seem like there is anything that can be done for that. I did say well how come no other ENT or dr told me this - i guess it seems to come down to the dr and how they do things. Alot i've seen i guess have been focused on ruling out sinister things and a cause and once they've done that they've just said its tinnitus without explaining why.

The doc said there were a couple of other avenues that could be pursued but honestly, they sounded pointless and when i said that they kind of agreed to. One was to try grommets, but i was pretty much told that wouldn't help or get rid of the noise so i was thinking why bother or do that then. Apparently it could help with the patulous ETD and fluid - but i'm a chicken so i wouldn't go down that path. There was some other freaky things mentioned but again they didn't sound like they would really help.

The doc just said it was strange that i can hear the noise during the day - i was thinking the only people who i think can answer this (and that i would believe 100%) is other people with tinnitus. I know it bugs me but its the night time and lack of sleep that's killing me.

 

Hi there,

I get very much the same as you on these points.

1. When I yawn the noise/tinnitus will increase significantly in volume in my left ear (RIGHT EAR FOR ME)/(RIGHT CHEEK FOR ME) left cheek area as my mouth opens wider and then it will decrease as my mouth closes.

2. If I stretch while I’m lying in bed/on a couch it will cause the noise to become louder – very similar to what happens when I yawn.

3. If I scratch the inside of my right ear and jiggle my finger around in it, it will cause the noise on the left side to become louder.

I have high frequency Tinnitus both ears. But when I move/manipulate my jaw - it produces an additional lower deeper tone below the high pitched sounds.

All the best to you! ;o)

 

Is mastoiditis always bacterial? If it is then for sure IV antibiotics would be the way to go, there is a risk to worsening T with most antibiotics, but leaving a chronic bacterial infection is even worse.

What? Why on earth is that strange? I thought only very mild tinnitus could only be heard at night or in quiet places. It sounds like hasn't seen many patients with tinnitus.

 

I discovered some research on body temperature and sleep. I tried it and after 6 years of terrible sleep, I have cracked the puzzle. This information is from this Joe Rogan podcast with a sleep specialist and it helped me enormously.

Joe Rogan - Sleep Expert on Insomnia

I have depression co-dependent tinnitus. It is a loud ringing noise that never abates.
I struggle with sleep continually and for the past 5 years has been slowly dragging me down.

I did not know this at all, but by cooling the body you can induce sleep. For the past two nights I start by turning all the lights out for an hour before bed. I put a fan right next to me, in bed, no bed clothes but a blanket, and wear a warm hat and socks. For the first time in a long time I wake feeling rested. Is the average body temperature of a person with tinnitus hotter than those who don't have it?
I really hope this link helps

 

Yes. Suspect mastoiditis needs quick attention. See an ENT. If an ENT office can't give a quick appointment, I would head to the ER.

Cefriaxone - Rocephin USA, I believe is 0.25% chance of getting T. The number would be higher having T. Flouroquinoline Ciprofloxacin which is less powerful than Cefriaxone is more T dangerous.

Check for fever.
White blood cell count and then a CT is sometimes used.

Actually an ER can give treatment faster by IV, blood work and CT.
Bring hearing protection.