“You Should Try Yoga”

Not gonna lie, I am struggling hard today. In a few days I will hit exactly 3 months with this and I’m still nowhere close to habituating.

I’m only 26 years old and my entire life has come to a halt. Various attempts to feel normal have resulted in my tinnitus worsening. I tried to get back to working out, and each session ended up in a higher pitched tone. Went out to a couple breweries with ear plugs, and felt normal but the next day was a hard crash, and even though I didn’t experience a spike, I felt even more depressed as I had a taste of my old life that isn’t really real anymore.

Had some friends over for a movie night - including snacks and red wine. The next day woke up with a louder popping sensation in my good ear and pulsatile tinnitus/vibrating that lasted a good 5-6 hours.

I know it’s still early on, but I can’t help but feel like my entire life is ruined. Seeing older people on here say “I can’t imagine getting this in my 20’s” or “I’m so happy I managed to live most of my life before this” makes me even more depressed.

More than anything I wanted to be a mom. To have a happy family, to see my mom be a grandma. To celebrate my friends and their milestones in life (weddings, birthday parties, etc). To get married myself and travel the world, advance in my career. Everything has been taken away from me.

I’m growing increasingly frustrated of family members telling me to try yoga, or try icy hot for my back. To stop “self diagnosing” myself and to see more doctors (I’ve already seen an audiologist and ENT). To get back to my normal social life and stop reading forums.

I know that in a way some of the things above are right, I should see additional doctors to rule out other causes. But I am 100% certain my tinnitus and hyperacusis are due to noise exposure.

For a while I found comfort in thinking my T was due to ETD or TMJ but I’m starting to think the loud popping and crackling I hear is due to Hyperacusis and my jaw pain has developed from all the stress post-Tinnitus.

I wake up with severe anxiety every morning, because every day is exactly the same. I am not strong enough of a person to live like this and I WANT TO LIVE, just not like this. I spend each day thinking about the least painful way I can leave this world when things get too unbearable. I’m struggling immensely, and there is no aid in sight.

 

This is probably not much help to you, but I'm in the same boat and I feel your pain. I deeply sympathize and think I can say that I know what it's like to be in your shoes. It's been 17 months and I've habituated 50-60%, still the trauma and debilitating feeling of having tinnitus is overwhelming. I only have mild tinnitus in one ear, but it's robbing me of sleep and life quality. When you say that you "want to live, but not like this" you really hit home - I feel the same. I'm already on disability pension and not much to show for in my life. I won't have any children, I don't have a girlfriend or a job. Life was already pretty bad when I got hit with tinnitus, now it's nearly unbearable. At the same time I've promised myself that if I ever get rid of my tinnitus, I'm not going to complain about anything for the rest of my life and just enjoy the silence.

Hopefully we will have a cure soon, as it seems more researchers and scientists are starting to take our suffering more seriously. I'm picking up my Lenire device on the 27th of February, still worried that it might make it worse but I have to try. It's the only way I will know if it's going to work.

 

The first 3-4 months are unanimously the worst time you’ll probably ever have to experience in your life. By 6 months some of the anxiety should be abating.

I used to do yoga all the time before my accident and now it’s completely out of the question because prolonged static positions can hurt my neck. Also losing the ability to hear silence greatly handicaps your ability to achieve a blissful mind-body connection.

Our therapy options are shit, and there’s no way around it. No one around you is going to be able to empathize and frankly it’s insulting to me when people try. Do what you can to blow off steam and eat up the seconds that compose minutes that compose hours that compose days that compose weeks that compose months...and you should eventually see progress. This is maddening and an unacceptable response, I know. Read @jjflyman’s stories a little ways back in the success stories. If he can be cured of intrusive, shrieking tinnitus in 18-14months, and reduce his relapse from a 9 to a 1 after another 3 years at his age, there’s no reason why people our age can’t wait and do the same. It’s all we can do until the market gets going with regen tech.

Also, just cut out doctors, full stop. If they couldn’t have the decency to be informed about administering steroids during the acute window in which they’d have actually been a great deal of help, there’s nothing they can do. If heaven & hell are real, I suspect GP’s to be spending a significant amount of time burning in purgatory for their complacency.

Hang tight.

 

To clarify - each spike I had from going out was different. For example, workouts caused an actual ringing tone which I normally don’t have and went down after a few hours. Drinking usually causes my usual hissing to go up to loud crickets but also goes away.

I’ve noticed if I ever have a “quiet day” it’s followed by a really bad day. Ex, yesterday in the office my T was almost undetectable. I sat in our silent conference room and could hardly hear the hisssing/electric sensation I usually get. My noise distortion from the space heater was also notably better.

Today - loud hissing, extreme sensitivity, lots of pressure in my head. I woke up with severe anxiety this morning and my heart was pounding despite me going to bed fairly early and not being anywhere noisy.

I live in the US, and have thought about moving back in with my parents but they don’t really understand the condition much and I know me moving back home will cause lots of arguements over me not trying hard enough to heal - it will be endless “go try yoga, get out of the house, go to church!”

Plus I will lose my insurance if I don’t work

I worry moving home and deviating even further away from my normal life will cause an even quicker pathway down to ending it all

 

At this point I’m only going through the doctors so my parents empathize more. Doctors and me not having a proper “diagnose” seem to be their favorite thing to reference lately

This is despite them seeing several severe breakdowns. At this point I think the only thing s that will make them understand are a diagnosis from a doctor or a failed suicide attempt. My mom is an amazing, caring person but she really doesn’t understand and refuses to believe this is all from noise damage as she thinks people my age don’t get it

She also refuses to read anything on this
Forum and cuts me off when I bring up examples of young people like me who also suffer

 

I have a loud unmaskable hissing + tones if I really tune in but the noise distortion and sensitivity is what kills me the most.

 

Docs won’t render a formal diagnosis of tinnitus until 6 months out, from my experience.

 

That can be due to a ton of things, blood flow etc

Exercise for me is weird too, sometimes feels good, sometimes spikes tinnitus, or makes me hear worse... it is strange, but exercise is supposed to be good, so I keep my routines.

 

What I've learned in my nine years with tinnitus is that one can live a life with tinnitus and despite tinnitus. What you're going through and what you're experiencing is normal at this stage. It's difficult, but it does get better for most. Please don't give up on your dreams

 

I haven’t seen too many Hyperacusis success stories which is scaring me even more at the moment

I am wasting the best years of my life laying in bed crying. My neck is already starting to hurt from laying down all day flipping side to side but I have no way to spend my time on the weekends otherwise

I’m literally being tortured. I went from being a social person, working out 5 times a week, going on dates, seeing friends at least 3 times and traveling to being an absolute shell of a person. I am so ashamed of what ive become and that this is my reality all because of my love for music

 

Nothing brings me joy anymore. Absolutely nothing. The highlight of my days are the phone calls from my mom. That is it. I am absolutely pathetic and it’s only down hill from here.

I truest don’t see how it can get better. Everyone I’ve spoken to has a ringing noise which is maskable for the most part

How do I go from never ever experiencing Tinnitus, not even after a concert, to this catastrophic hissing that isn’t masked by anything and noise distortion but my hearing is “perfect” for my age?? It just doesn’t make sense.

I want to put an end to this suffering. I don’t know how to find the time for further doctors appointments because I went through the same thing last year for another issue and already am barely hanging there by a thread with my employer and my medical issues. If I quit my job, I lose my insurance. Of course this all happens when I turn 26 so I can’t even be helped with my parent’s insurance.

Life really is cruel.

 

For the first 6 months I had hyperacusis that was bad enough that I couldn't handle being in restaurants and washing dishes, or even the sound of running water. It DID resolve for me, and even though I'm going through the worst spike I've ever experienced right now, my hyperacusis hasn't come back, so I hope that's encouraging.

 

Please don't give up on music. Music gave me tinnitus but it also saved me from my worst time with tinnitus.

 

I can’t handle life if it’s just going to be endless spikes

 

To be fair my tinnitus has been mostly mild for this whole year, and became damn near silent for the past two weeks before this spike happened. So I've been making progress, and even though everything in my head is in freakout mode and it's hard to convince even myself of this, it will probably continue improving. From what I've gathered here, when people make leaps in improvement they still had setbacks along the way that didn't stay forever.

 

Great, I can deal with my mom getting upset with me for my “self diagnosis” for another 3 months before I receive a little bit of sympathy

 

Mine plays games on me. I get days where I almost don’t hear it, and then have a crazy loud day out of nowhere like today, my room might as well be a field of crickets.

Every time I swallow I feel like my ear drum pops up.

I don’t know if anyone remembers these toys called “rubber poppers” but you’d have to turn it inside out and it would pop up, well that’s the sensation I feel in my ear each time I swallow. It used to be mostly my right ear and over the last week it’s moved to the other one as well.

 

I would say normally my tinnitus shifts in pitch and loudness VERY frequently and is extremely reactive to almost anything, but it has gotten better, so yours can too.

Probably your anxiety is causing your eustachian tubes to do that, and it gets worse if you think about it more. My ears get plugged and feel funny when I start thinking about tinnitus constantly. You have to get your mind out of that loop it's stuck in and the symptoms usually get better.

 

Two of my coworkers had their small children in the office all day yesterday and with the terrible acoustics it was just non stop screaming all day. Probably caused my spike. I can’t think of anything else. I literally just came home, ordered take out and went to bed early.

 

I don’t even enjoy those rare good days anymore because they’re 100% always followed by a bad one.

 

I hardly feel qualified to respond since I myself am in the same boat, having recently been afflicted? stricken? attacked? tortured? eviscerated?... by tinnitus as well (not quite sure how to describe it yet).

However, realizing the wisdom of persevering through the next few months, perhaps a doctor and an anti-depressant could help. Some anti-depressants are even prescribed in lower doses for tinnitus, and possibly modulate it (some of the ones I've seen discussed in the forum are mirtazapine, amitriptyline, and nortriptyline). And hey, if it can help cushion what you're going through as well, at least for the next few months, there's that.

Also, if helpful (it's helpful to me), in the blur of mixed messages that bubble around the whirlpool of tinnitus wisdom and witchcraft, there do seem to be numerous stories of improvement over time.

So, there's that too.

 

Everything hasn't been taken away! I got this at 27. It was so loud I could hear it over everything and I have it in both ears. Your life is no where near over. The salty snacks may need to take a back seat. The liquor may not be on the menu for a while. Let your body heal, let your mind come to terms and find ways to stay calm. Just focus on staying calm and even comfy. I am on baby two. Babies are not out of the question. You can change so much in a couple of years or a year. But don't give up and don't let this take over your life and make your life choices. I refuse! Message me if you need to vent. I'm here. I have bilateral tinnitus. Its loud to moderate but I can always hear it. Eff tinnitus.

 

I'm really sorry, I can't offer any help, just empathy, and I'm sorry for venting here, in your post.

I had my 4 month anniversary on Valentine's day and I truly feel everything you said, like everything had been taken away from me. I'm still struggling awfully. (No surprise, because I've been wallowing here since October.)

Lately (knock on wood) I have been sleeping more and a bit better than before (like 4-5 hours with waking up quite a lot, but it's better than 2-3 hours), but tinnitus is not improving. Still fluctuates, still migrates between ears, still this shrill, screaching sound.

I'm so freaking fed up with everything right now, I want to crawl out of my skin. I know, that tinnitus is annoying for relatives of sufferers as well, because they just can't understand it, and are unable to help, but I feel like my family is getting mad at me. Like they blame me for "not trying hard enough" to seek treatment options, doctors, alternative options. But for heaven's sake, I went to 4 ENTs, neurologists, MRI, carotid doppler, rtg, 2 audiologists. Where should I go next? I read the Internet, read the thesis of the best tinnitus specialist in my country and it's pretty clear that without a miracle right now there is no surefire way to get rid of tinnitus. I was looking for a cause, but now that I have a chance based on my latest audiogram of having otosclerosis, I'm even more hopeless.

When people who don't have it offer opinion about my depression being the definitive cause, me not being positive enough being the burden of my improving, me not having enough faith being the biggest problem, I just feel totally misunderstood and rage or total frustration depending on my mood.
And they totally don't get my fear of it getting worse, my fear of loud sounds, because "XY has ringing for years and they live a full life, attending concerts, and theirs hasn't changed." Okay... I know, I'm not easy to be around right now, but it's not baseless hysteria to avoid loud noises as much as possible.

 

Completely understand how you're feeling, it devastated me and I was 45 when mine started.

BUT...

Take comfort in the fact that there will be good treatments hopefully with the next five years, maybe sooner.

I've had some benefit from using Lenire, I still have tinnitus and it's still a tough issue for me but definitely not as bad. This is at least evidence that research is on the right path.

I found mediation to be helpful but it's something you have to persevere with, in my case it can drop the level of my tinnitus, strange but true.

Sending a big hug from across the pond.

 

I hear your pain. It's important to remember that in a proportion of cases (no one seems to know what %), tinnitus actually goes away, and can do so up to about the 2 year mark, though I did hear of a few cases of it going after 4 years. If it doesn't go, in other cases it can get much quieter and quiet tinnitus is REALLY different to loud. Yes it does not happen for everyone, but anecdotally it seems a bit more common in the young. Also there is a link with stress so if you try amap not to freak and to ignore it (seems impossible I know) some people think this can help it go.

 

@Orions Pain

Please please please don’t give up hope.

There is a light at the end of the tunnel even though it doesn’t seem like it now, like everyone has said we’ve ALL been in this position and believe me it is caused more by the anxiety than anything else.

You may feel as if your on a vicious cycle but you will feel better given time

I have had tinnitus since early August 19 with no obvious cause (plenty of probabilities though), by September my ears felt sensitive, couldn’t listen to my wee dog barking, female voices sounded shrill and clanging dishes would make me cringe, anxiety was taking over but now while I still have tinnitus (mostly low hum with the odd spike now) my ears are so much better, and what did I do to get here... nothing but time... I have been cautious with my ears re loud noises but I have never overprotected

Believe me I have been there as we all have but as they say ‘time is a great healer’ and it’s true.

Don’t give up on life... don’t let tinnitus win.


Hugs and kisses

Denise x

 

Ya my Dr. started me out on 10mg amitriptyline. Started taking 20mg after two weeks and now I'm up to 25mg. The low dose doesn't seem to help with depression at all but more so just function as a sleep aid. Ironically I wasn't having that much difficulty sleeping but that's what it ended up helping me with anyway. Difficult to say if it's made any impact on my tinnitus at all. There seems to be a slight risk of otoxicity so I wouldn't recommend it unless your tinnitus is noise-induced and you're really struggling for sleep.

 

Thank you so much for this. It’s honestly so nice to hear that it’s not impossible as I’ve always looked forward to being a mom and I love kids. I just fear that I won’t be able to meet anyone with this condition let alone have kids which has been the main source of my depression as I’m just afraid of ending up alone

 

Thank you Denise! If anything having H has made T seem less scary. I pray that this sensitivity goes away, it’s hard but I keep telling myself to give it time.