Tinnitus for Many Years, Recently Got Worse: I Don't Know How to Go On

Hi, I‘m new here!
Sorry if my text is difficult to read: English is not my native language.

I know it’s one of the worst mistakes to do, but right now it feels like tinnitus is sent to me directly from the devil. My tinnitus first started when I was 21 (way too early in life, I think), after an infection in the right ear - I'm 27 now.

It was a high-frequency noise, just like when you have an old TV and turn off the sound. It drove me crazy in the beginning (and even more did the cortisone pills that gave me a really bad time), but after some time, I developed strategies to deal with it. The hardest part was and remained sleeping, not only falling asleep, but also not waking up again. The tinnitus was so present, it woke me up many times, and I wondered what was so loud in my room, before I noticed that the noise was coming from my head.

During the following years - hoping that it would eventually get better - I started avoiding loud places (not that I had gone to night clubs a lot before), stopped drinking alcohol (not that I had drunk a lot before) and so on.

I didn't feel restrained by that, because I hoped that my "good behavior" would finally yield some results. On other parts of life, I decided not to get tinnitus in my way and finished university, started a good job and engaged in all kinds of activities.

A couple of weeks ago, when the Corona restrictions started, I moved back home to my family for a couple of weeks, working from home office. In mid-April, the night before my 27th birthday actually, I started hearing some noise coming from the heating. I didn't bother too much, because it was cold outside, so no wonder the heating was put on (although tinnitus has made me sensitive to noise coming from "outside" as well). However, during the next days, the noise remained. I called a mechanic to try and find the cause of the noise, and spent a lot of time in the cellar trying to locate the source of the noise. So much had I processed my tinnitus, that I didn't even consider it could be from inside my head. In fact, it sounded so extremely real!

Last weekend, I was staying at a friend's house - and I was hearing the heating noise there, too. Suddenly it was clear for me: It wasn't real. Since I realized that, I didn't really sleep for more than 3 or 4 hours in a row. Today, I got a cortisone injection into my right ears - Please hope together with me that it has some effect: All my strategies (putting the right, "noisy" ear on top while the "quiet" ear rests on the pillow, etc.) are worthless. The two noises ("beep" from the right, and "heating" from the left) keep fighting each other at night. Has anyone here been in this situation?

In addition, my last 6 years seem like a fraud to me. Why did I give up some experiences hoping to improve, when I only got worse?

I really don't know how to go on.
I'm just so incredibly tired but still can't get enough sleep.

 

Hello!,

Have you recently started or stopped any medications? I always develop a humming noise, kind of like a cargo plane flying by when I take certain medications. I have had this noise start after stopping medications and while taking them.

 

Hi there and sorry for being a member of this unfortunate club here.

Have you tried Melatonin or Valeriana (Baldrian in German, assuming you're from there)?
They help with sleep, but have little/no side effects and don't cause addiction. Exercise during the day helps too. Some people here sleep with a masker (a noise that helps you focus away from the tinnitus). These are the first things I would try out.

I assume your tinnitus is quite loud, do you hear it over anything or is there something that masks it completely?

Good thing is that we can expect some form of treatment in the next couple 2-5 years that should also work for ear infection. It might not be a 100%-cure, but at least should reduce the noise to some degree. Best you check out the research forum in here.

 

Hi Anxinnitus, thank you for your reply! No medication at all - this can be ruled out, I think.

 

Hi Sevv! Thank you very much for your reply as well.
I haven’t tried Baldrian - maybe I should give it a go. When I told her about my inability to find sleep, the doctor prescribed me some pills of Zopiclon, which enhances sleep but also seems to be addictive (which is why I don’t really dare taking them - one night I took half a pill, slept for 6 hours like a stone, and incredibly long time for me during the last weeks, but still felt really exhausted the next day)
From my „older“ tinnitus I know that sports are one factor that drives the noise up - just like alcohol: any activity that increases blood flow makes it louder. Strange, no?

I have thought about sleeping with a masker, but I have to change my sleep position first (which is quite hard given that I can’t even sleep in my usual position) - until a few weeks ago, I had my „noisy“ ear up and the other one on the pillow. Now, the one on the pillow hears the noise no matter what music I play next to it...
My tinnitus is masked when there are above-average noises, e.g. a close TV or a hair drier. Not sure I can have that running all night.

 

Quick question. You mention working from home, is this behind a PC/laptop all day? If so, how is your posture? Any issues with your neck?

My tinnitus is at least partially due to neck issues (neck trauma + forward neck posture) and at times I'd describe mine as a heater/radiator too.

Not saying this is your cause, but neck issues are known to cause tinnitus, so it's worth checking out.

 

Hi ASilverLight, thanks a lot for your reply!
Yes, I work behind a laptop all day. At first, I didn't pay a lot attention to my posture but now, when the new noise started, I adapted it to recommended standards. I went to a physiotherapist, too, he was checking my neck and head and said that muscles were all fine and not unusually tense or anything. So maybe this new posture will help a bit with it. On the other hand, I can hardly concentrate on work, currently...would love to fall asleep in front of the laptop - I just can't.

 

By the way - does anyone of you experience extreme sensitivity to background noise, but only when trying to sleep (kind of a night-time hyperacusis)?
Masking sounds during the day are really helping me, but at night they drive me just as crazy as my tinnitus. Any ideas what I could do?
Also if someone was willing to just talk a bit, that might help me.

 

Welcome to the forum. I wouldn't view it like that. Tinnitus and hyperacusis can always get worse (and better); there's no karma system. It's possible that it would be even worse today if you didn't take those precautions. You did nothing wrong.

 

Hi Zugzug, thank you very much for your words! I know it doesn’t make any sense to think about what I could have done differently in the past, it just feels so unfair. I also know that feeling unfairly treated doesn’t help either, which is again unfair. A perfect cycle...but I try not to get into it too often.

 

There's lots of people in here who had bad luck. I was similar to you, being very cautious and still misjudged a situation that increased my tinnitus from very mild/mild to moderate-ish. I still consider myself as one of the good cases in here because my life is pretty much normal, just have some difficulty relaxing. I just hope not to screw up again in the next two years, otherwise I'm fucked.

 

I know all about unfair -- I have life altering hyperacusis to the point where I haven't left my house, worked, conversed (without tons of symptoms), and many other things in about a year; I often struggle to tolerate even the sound of a pencil writing. I had just bought house, landed my dream job (professor) that took a decade to achieve; I was optimistic about the future.

You will find that most of the people on this forum are exceptionally kind and smart. One of my favorite things about this forum is that there's something for everyone. If you are feeling really dark, there are people on here who can relate. If you start to improve and want more chit chat, there's that as well. If you're new and scared, there are people for that too. It's a pretty versatile group, but you have to navigate around as you see fit.

 

I hope this is not what’s waiting for me now. The past few weeks at work were really hard (corona restrictions helped me out a bit). At first I thought I might go on sick leave, but what would I do all day then? So I‘m clinging to my position, hoping that I don’t make more mistakes than usual.

Thank you for your introduction to the community here. I was reading on here for a bit, but finally decided to register to talk to people with similar issues.

 

But isn‘t that a self-fulfilling prophecy? Always trying to avoid a mistake, when it‘s coming in the end anyway. I‘m really struggling with this. If it gets worse no matter how hard I try, why try at all?

 

Doing this definitely isn't a good idea. We'd all do things differently in hindsight. I, for example, would've stayed home from work after my incident/the moment my body was telling me I was doing too much. I didn't, and things kept adding up and now I'm here. To think I protected my ears all these years only to end up here for (mostly) different reasons...

It's fine to feel like you don't deserve this now and then, because no one does deserve this. But try to find distractions. Do things that make you happy, and clear your head. For example, I've picked up art again, a hobby I lost many years ago and am now getting back into. It certainly helps me focus on something else for a while.

I have this too. It doesn't agitate my tinnitus, but I find masking at night horrible as it blends in with my tones and gives me even less peace than just my tones do. Mind you, I tried masking therapy for insomnia many years ago and it bothered me a lot, too. Although I did used to love the sound of real rain at night... fake, not so much.

If you ever want a chat, you can PM me.

 

Hi ASilverLight, thank you for your message!

I also thought about this: Maybe my body is sending me the signal to go slower or decrease the pace. I'm working for a strategy consulting firms, and 60+ hour work weeks are not rare. However, my impression is that I suffer from Tinnitus the most when I don't have enough things to do/enough stress, just like in the current Corona shutdown week. I'm just not sure how sustainable drowning Tinnitus in (stressful) activity is. Probably not really.

Which solution did you find for this? Some hints would really help me.

I'd really like to, but I don't know how I can do this. Do I have to have a certain amount of posts in the forum before this is activated? Thank you .

 

@Gluecksritter

I can't do absolutely nothing, either, so I do keep busy. I just make sure I don't pressure myself and avoid stress as much as I can. When I do things that calm me down and entertain me I feel better, and in turn I'm less bothered by my tinnitus. So it's finding a balance, I guess.

I'd been working a pretty physically taxing job for 13 months when I got my tinnitus, and in the 2 months or so before onset I was regularly incredibly drained, which was definitely my body telling me to slow down. Unfortunately I wasn't able to, but I really wish I had. My best advice is listen to your body, give yourself rest, but stay busy with daily life.

Honestly I just don't mask at night. If I keep up good posture, eat well and do my physical therapy exercises etc 3x a day, my tinnitus is lower and settles much quicker. That's not to say I don't hear or notice it, but mine fluctuates a lot based on my mood and whether I keep up with my treatment plan. I know that doesn't apply to you though, so I guess you're going to have to experiment a little.

If white noise bothers you, try some soft instrumental music, or see if there's anything like a fan you can leave on at night. If it all bothers you, try and see if not masking at night works.

As for PMs, if you click my name next to my post you should see a ''Start a conversation'' option. I'm not entirely sure what you need to do to send PMs though, sorry.

 

Hi all, I went to a doctor‘s appointment today and he said that it may be worth looking into the connection between tinnitus and eyesight. I‘m quite short-sighted (~-7 dioptrien on both eyes). Does anyone of you have experience with that? Could that be an explanation or rather just another dead end?

 

Do you have gaze-evoked tinnitus? In other words, with a stationary head, eye movement laterally or vertically causes a spike in the ringing.

 

Thank you for your reply!
I just tried it (never did before): When I move up my eyes really strongly, the tone becomes slightly higher for parts of a second. All other directions: No changes. When I close my eyes really strongly, there is also a spike. But I‘m not sure if it really comes from my eyes or if it’s just because of the movement...

 

@Gluecksritter -- I highly recommend the following technique for anybody who does a lot of sitting at the computer:

The Simplest and Most Effective Exercise For Thoracic Extension -- 5 min.

Also, I could only sleep about 5 minutes at a time, and about 20 minutes/day total in the beginning of my tinnitus. One night I took a 1/4 tablet of Tylenol (3/4 codeine) for a headache, and I slept several hours that night. It was a godsend that spelled the end of my extreme inability to sleep. I mostly sleep 8 hours/night these days. I would encourage you to experiment with different sleep promoting supplements (melatonin is very good). Even something like codeine, if used in moderation, can be very helpful, as it was for me. -- Take care!

 

Hi Lane! Thank you very much for your reply. I‘m going to try out the exercise you sent me!

My sleep pattern since the new Tinnitus started is a bit different. Usually I go to bed at around 11pm, fall asleep rather quickly for around 10 minutes, then wake up again (from my „own noise“ I guess) and lay in bed awake until around 4am. Then I get like 2 hours of sleep, and after that lay in bed for 2-3 more hours struggling to get up. So my „total bedtime“ actually has increased because of my inability to sleep, but the next morning I‘m enormously tired anyway.

I also experimented a bit with sleeping aids, tried Zopiclone (since I never took any calming/sleeping aids before, I thought this might really knock me out), but the only effect was that my „awake time“ between ~11:30 and ~04:00 was a bit calmer. I‘m a bit hesitant to take this or other medications for a longer period of time because I don’t want to get addicted to any of it.
It’s good to read your success story of restoring your ability to sleep! Do you still take any supplements/medication or can you even go without them now?

 

Sorry to read about your situation, this thing is a real fucker. Mine is pretty bad and some days horribly loud but after some months of trying to cope with it, I have learnt to sleep again, not really like 8 hours in a row, which could not even do before T, but at least 6 / 7. I am not taking any pills because I fear to really become addict. I took Zopiclone prescribed my doctor on alternate days, it truly helped but cannot be a long term solution.

I have learnt to control my anxiety and this grants me that I fall asleep quickly and also that when I awake in the middle of the night, can go back to sleep. Your tinnitus does not awake you, is your excessive alert state. You must learn to stay calm when going to sleep, knowing that the noise will disappear. I often awake and go to the toilet, the sound increases in volume progressively, but I control my anxiety and then go back to bed knowing it actually goes away when you are in the other side

Seems cheap philosophy but it works for me. For calming down before going to bed I avoid exciting TV series or reading, and many times take a glass of red wine, that leaves me KO.

Posture is super important, my T comes mostly from my constant neck pain, at least my HNO told me that, who knows, so I try to have good habits behind the computer or even walking.

Anyway, most important advice, try not to get anxious about it, you must learn to live with it, sounds depressing but man, there is nothing else to do for now. Some people even make it disappear by achieving their brain to ignore it, that must be a cool superpower

 

@Gluecksritter -- My "philosophy" is that if a person can get relatively normal sleep, and can find some effective ways to "calm" their brain and neurological system, that in itself is about 90%+ of being able to meet the challenge(s) of tinnitus. -- That said... I take 3 mg. of melatonin every night, and that's usually all I need.

When I suspect I may need a little more help, I also take a product by Irwin Naturals called Melatonin plus 5-HTP & Rhodelia. This company has other sleep products such as Power for Sleep, which is at the abpve link. If I think I'm going to need even more help, I then take just a 1/4 tab of Tylenol 4. Not only does it help me sleep better, but I generally feel better the entire next day. -- @goodfella032

My wife is a counselor, and just mentioned last night one of her clients got a prescription from her doctor to help her sleep. And what was that prescription for? Tylenol 4! I thought I might be the only one in the world who got so much help for sleep from it, but apparently not. I would actually prefer a straight codeine product, as I feel certain that's what helps me sleep. But doctors are getting more skittish about prescribing opioids since the opioid crisis.

Another thing that is helpful for me is to make a stiff batch of poppy seed tea. It has a variety of opioid compounds in very small amounts, but when taking enough of it, it can also induce a sense of relaxation and sleepiness. Be aware however; in case you have to do drug tests for employment or anything like that, you will get a positive drug result if you've been eating poppy seeds.

Regarding your laying in bed for hours while awake. Here's something to consider: Various kinds of meditation techniques can induce such a deep relaxation and sense of rejuvenation, that it's considered by some to be more restorative than sleep. I heard a story once of a monestary where the monks would sing and chant for up to 8 hours a day, do a remarkable amount of work, get less than average amounts of sleep, and literally never got sick.

A new "director" came in at one point, and thought those 8 hours were mostly a waste, and ordered a halt. Guess what? The monks became much more lethergic, needed way more sleep, and got sick way more often. Singing stimulates the vagus nerve, which in turns orchestrates the body's parasympathetic (calming) response to excitatory stimuli, thus improving sleep for some people.

The person who told this story tries to get the word out about the healing and calming effects of singing a spiritual mantra HUUUuuuuuu. He made the claim that singing HU for 20 minutes (outwardly, or silently) is roughly equivalent to singing up to 8 hours a day. Who's to say? I discovered this spiritual mantra many years ago, and it helps me considerably in dealing with tinnitus, and helping me wall it off so I can sleep much better. I described how it works for me in these posts: Post 1 Post 2 -- I wrote more about what works for me in THIS POST.

 

Hi davidmp, thank you for your message!
I'm not really sure if the noise really disappears during sleep (although this would be a calming idea): Recently, I haven't had many dreams (mainly because of the lack of sleep), but before my "second tinnitus" started, I even heard the noise in my dreams sometimes (or always, maybe sometimes I wasn't aware of it). Kind of like if you hear someone snoring and include this in your dreams.
It's interesting that you report the sound increasing and decreasing, my impression is that this is true for the majority of people here on this forum. For me it's the same - almost always. When I drink alcohol, it increases a bit (or my perception of it). So the glass of red wine is not an option.
Posture is definitely important, and I try to work on it strongly, currently. Not so sure how I can combine this with my job, but time will show.
Please tell me how to get this superpower .

 

You gave yourself 6 years when it hasn't gotten worse. Also there is no limit how loud it could be, or how many tones/hisses/sounds you could be hearing at the same time. So I think you should be happy about your decision not to test your body's ability to get permanent spikes.

Are you sure you haven't been taking any medication that might have caused this?

 

Hi Lane, thanks again for your really helpful post and the links to your other posts!
I read that melatonin is a hormone that regulates the day-night-rhythm - Looks like something that may be helpful to me, and shows me one more time that just making my bedtime longer will not be the solution to my issues because it may ruin this rhythm. No wonder my body is confused when it's used to 7-8 hours bed time and currently gets more like 11, but only sleeps in 3 of them.

I'm a bit skeptical about opioids (probably mainly because of the media coverage about it, in Germany the use of opioids may have increased during the past few years, but is a lot below the US levels, so I'd say, there is no obvious opioid crisis here, but certainly there are people addicted to them here like everywhere else) - the idea of drinking poppy seed tea is interesting; and I'm not afraid of drug tests (they're not that common here after all, and if my long-term employer really asks for that, I guess I have a different set of problems - actually the only time in my life I had to do a drug test did my exchange semester to the US as a student).

Meditation is definitely a technique that I should look into more deeply. There are a lot of different schools of thought and the whole array of offerings is a bit unclear to me so far, but if it helps I'm ready to become an expert in meditation as well. Since I don't have time for 8-hour-shifts of singing, I may start out with a nice Huuuu this evening .

 

Hi Bill, thank you very much for your message!
Of course you can look at this topic both ways, and the one you write is the healthier one.
It's just that the 6 years you talk about are between the ages 21 and 27 - I know it's not helping to think about that, but actually these should be ages when you don't have to worry about health, I think.
But you're certainly right - It could always be worse and I should be happy it's not, it's just difficult to take this position when I'm not really happy in general, currently.
Actually, last night my sleep was quite okay for the first time in weeks (maybe also because of the mental help from this forum, thank you all!) - which in turn causes thoughts like "tonight it will certainly be a lot worse, because for the first time in weeks I'm not tired enough to fall in a coma". Not helpful again, I know .

My "first noise" from 2014 could have some connection to medication - I was taking antibiotics to heal my cold/flu/whatever it was (but the tone only came to me some days after the infection was over). For my "second noise", I'm absolutely certain that it can't have anything to do with medication, because I haven't taken any medication for at least the entire year 2020.

 

The rule of thumb that I use when I get spikes is to wait at least a month before getting worried about it being permanent. If it doesn't begin fading after a month, then that's a bad sign, but most spikes are temporary spikes.

In your case, it is a weird sound - I don't know what to think.

 

Hi Bill Bauer, the month is not yet complete, so there’s still some hope it’s going to begin fading - however, I never had a sound fade before: 6 years ago, the first noise came and stayed pretty much unchanged, and now, the second one joined a couple of weeks ago. There were no other episodes of other noises in between.

Why do you think the sound is weird? It’s like a heating device, or maybe a bit like running water with some metallic sound. Unlike my first noise, it’s not constant, but going up and down (which is even worse for me, because I can „follow“ it hoping for it to go away or change frequency).