Anxiety from Tinnitus: How Have You Managed?

[IYIiKe]

Hey fellow TTers,

I'm about 3.5 months into moderate to severe reactive tinnitus and TTTS. While I can confidently say I am dealing with it better, I have a base level of anxiety that never really goes away.

I feel guilty when it saps my attention. I'll be working and it just grabs me like a hand from the heavens. When it gets louder, I fear that it is my new normal. When I get comfortable with one tone, it changes. Even before sleep it will grip at me. I am always fearful it will worsen. Anxious that I will always have this condition forever and my soon-to-be second daughter will never know her father as the outgoing and generally fun man he was prior to tinnitus, and just a carapace who is all consumed by tinnitus.

Medication likely caused mine and while the anxiety sucks, it isn't bad enough to overcome my fear of medications worsening it. My therapist I'm seeing is at her wits' end with me because I can't just CBT my way out of tinnitus unfortunately. I want to exercise but I'm so exhausted by day's end that I just need to vegetate.

I understand some are fortunate enough to not be as affected, but for those who were/are — what changes do you think made a difference, and how long did it take for your tinnitus not to rule you?

 

[AverageJoe12]

Would you say you have hyperacusis or decreased sound tolerance? That's the one that's really taken me out of the game and turned me into a hermit.

Try some Magnesium if you're averse to medication. Magnesium glycinate is a good form. And try a heat pad for your neck and ears.

I know the brutality of this thing all too well this last year. But just do your best to treat yourself nicely with little pick-me-ups here and there. Vegetate if you have to. Say no to some things if you have to. If you get the urge to get up and exercise, do yourself that favor.

 

[IYIiKe]

Would you say you have hyperacusis or decreased sound tolerance? That's the one that's really taken me out of the game and turned me into a hermit.

Try some Magnesium if you're averse to medication. Magnesium glycinate is a good form. And try a heat pad for your neck and ears.

I know the brutality of this thing all too well this last year. But just do your best to treat yourself nicely with little pick-me-ups here and there. Vegetate if you have to. Say no to some things if you have to. If you get the urge to get up and exercise, do yourself that favor.

So I was having TTTS thumping when I heard normal loud high-frequency sounds, and it seems like decreased sound tolerance now. Recently, I have not gotten the thumping but a tensor tympani type of growl when those sounds occur and a tightening of the eardrum. My daughter play screaming, utensils on plates, glassware etc. trigger it. It thankfully doesn't hurt, but I am constantly worried it will worsen.

Thanks for the tips and I hope things improve for you!

 

[RunningMan]

I have low and high-frequency tinnitus, TTTS, hyperacusis, hearing loss, anxiety, and insomnia. But my TTTS is usually not much of an issue, and my hyperacusis is mild.

I'm still dealing with anxiety 2 years since my worsening. It tends to be the worst early morning, starting before I even get out of bed, and the best late evening, but sometimes it might get worse in the afternoon or early evening.

I've only found a couple of ways to reduce it. One is to take Lorazepam (Ativan) 0.5 mg, but I take it sparingly, usually in the morning on a bad day, and I almost always go multiple days without taking it to avoid tolerance. Nortriptyline 50 mg, taken for a few months, and Escitalopram (Lexapro) 10 mg, taken for 7 weeks, didn't help at all with anxiety. I have Hydroxyzine HCL 25 mg, but I only used that unsuccessfully to try to sleep better, so I'm not sure how effective it is for daytime anxiety. I have heard of it helping some people.

The most effective and safest way for me to reduce anxiety is to engage in about one hour of cardio-type exercise. For me, that was usually biking. The benefit seems to last hours but not overnight, and it doesn't improve my sleep. Lower-intensity exercise, like walking briskly, even with short runs from time to time, for the same amount of time, doesn't do much for my anxiety.

I do not have panic attacks or have a high heart rate when experiencing high anxiety.

 

[cullenbohannon]

Hello @IYIiKe, your message resonates with me, as I've walked a similar path with my tinnitus. Those early days were incredibly tough — I remember feeling constantly on edge, locked in a battle with that relentless ringing, to the point where I feared I might lose my mind. Reflecting back, my first year with tinnitus was so challenging that I leaned heavily on Xanax and seldom ventured outside my home. It was a struggle I honestly wasn't sure I would overcome. So, seeing you manage to do some work through these difficulties, speaks volumes about your resilience, even when the tinnitus makes everything feel harder.

Patience has proven to be a vital component of my journey. While three and a half months may seem like an eternity, it's still just the beginning. It took nearly a year before I noticed any significant change in how I approached my condition, and even then, progress was gradual. It's crucial to understand that it will get easier; not every day will be as tough as the ones you're facing now. The overwhelming fear that seems to dominate your life will gradually wane.

It took me close to a year before I began noticing a shift in how I approached the condition, and even then, progress was gradual. Over the span of two to three years, I experienced setbacks but gradually gained control over my tinnitus. It's important to acknowledge that everyone's journey is unique, and while it may be a bumpy ride, living normally with tinnitus is indeed possible.

My tinnitus, much like yours, is constantly evolving. The tones shift unpredictably, and unexpected spikes can throw me off balance. Yet, I've learned to accept these fluctuations as part of the journey. I've discovered that my reaction and attention to my tinnitus can amplify its volume, but for the most part, it's become little more than background noise. Mine is unmask-able and seems to compete with any noise I use to mask it.

Finding ways to reduce overall stress is important. Exercise has been a game-changer for me, not only in managing stress but also in boosting my spirits. Focusing on my diet and sleep. Additionally, slowly reintroducing activities that brought joy before tinnitus took center stage was incredibly beneficial. I understand that it may not be feasible for you right now, and that's okay. Start with small steps — perhaps a brief walk or stepping outside for short intervals, even if it feels uncomfortable.

Meditation has also been a powerful tool for me. Spending time in quiet reflection, especially during those uncomfortable tinnitus moments, has gradually desensitized me over time.

What if, because of overcoming this obstacle, you not only become an even more outgoing and fun dad for your daughter, but also someone who embodies resilience? You will have a sense of toughness and compassion for people that many don't and these will be invaluable skills to pass on to your children. Be patient and kind to yourself, keep exploring what works best for you — the rest will fall into place.

Brighter days lie ahead.

 

[AverageJoe12]

Hello @IYIiKe, your message resonates with me, as I've walked a similar path with my tinnitus. Those early days were incredibly tough — I remember feeling constantly on edge, locked in a battle with that relentless ringing, to the point where I feared I might lose my mind. Reflecting back, my first year with tinnitus was so challenging that I leaned heavily on Xanax and seldom ventured outside my home. It was a struggle I honestly wasn't sure I would overcome. So, seeing you manage to do some work through these difficulties, speaks volumes about your resilience, even when the tinnitus makes everything feel harder.

Patience has proven to be a vital component of my journey. While three and a half months may seem like an eternity, it's still just the beginning. It took nearly a year before I noticed any significant change in how I approached my condition, and even then, progress was gradual. It's crucial to understand that it will get easier; not every day will be as tough as the ones you're facing now. The overwhelming fear that seems to dominate your life will gradually wane.

It took me close to a year before I began noticing a shift in how I approached the condition, and even then, progress was gradual. Over the span of two to three years, I experienced setbacks but gradually gained control over my tinnitus. It's important to acknowledge that everyone's journey is unique, and while it may be a bumpy ride, living normally with tinnitus is indeed possible.

My tinnitus, much like yours, is constantly evolving. The tones shift unpredictably, and unexpected spikes can throw me off balance. Yet, I've learned to accept these fluctuations as part of the journey. I've discovered that my reaction and attention to my tinnitus can amplify its volume, but for the most part, it's become little more than background noise. Mine is unmask-able and seems to compete with any noise I use to mask it.

Finding ways to reduce overall stress is important. Exercise has been a game-changer for me, not only in managing stress but also in boosting my spirits. Focusing on my diet and sleep. Additionally, slowly reintroducing activities that brought joy before tinnitus took center stage was incredibly beneficial. I understand that it may not be feasible for you right now, and that's okay. Start with small steps — perhaps a brief walk or stepping outside for short intervals, even if it feels uncomfortable.

Meditation has also been a powerful tool for me. Spending time in quiet reflection, especially during those uncomfortable tinnitus moments, has gradually desensitized me over time.

What if, because of overcoming this obstacle, you not only become an even more outgoing and fun dad for your daughter, but also someone who embodies resilience? You will have a sense of toughness and compassion for people that many don't and these will be invaluable skills to pass on to your children. Be patient and kind to yourself, keep exploring what works best for you — the rest will fall into place.

Brighter days lie ahead.

Thanks for the shot in the arm here. I am struggling with the avoidance and not wanting to leave home but then being stuck in my own head at home with the inescapable ringing. I have sound sensitivity only in my right ear (hyperacusis ), and it's produced TTTS pain and tension on that side of my face so now I have this gnarly combo of tinnitus, hyperacusis, central pain, and have associated sound with pain.

When you were afraid to leave home, was it because of an underlying sound sensitivity or discomfort caused by the tinnitus? I think my hyperacusis really might just be an incredibly reactive tinnitus that has morphed with my underlying anxiety disorder. The "pain" I feel is likely my own middle ear muscular tension and jaw clenching and tense neck/shoulders that can bring about a migraine. I manage to go to work but come home but my social life has gone away. I never thought life could get so messy.

 

[Ngo13]

I just want to chime in as a parent to a young toddler and soon-to-be mother of 2, that your children will still know you as the fun and loving person you were before - because you still are, you can be. Life isn't the same after tinnitus, don't get me wrong, but the vast majority of people are able to pull themselves out of the anxiety hole after a while.

I'm over 2 years in and just started clawing my way out of my anxiety hole a few months ago. I still struggle, I still cry. But I've learned how to mostly navigate my life with what I have and you will too.

First, get those custom earplugs. I didn't get them until I was a year in and they vastly improved my quality of life because it allowed me to lessen my anxiety around noise while not cutting it out completely. They are easy in, easy out. I wear them every time I play with my toddler, when they cry, or at "high risk" times like diaper changes and cleaning up after meals. (I do have TTTS/mild loudness hyperacusis too). If your daughter is bothering you, these are a good option. You don't have to use them all the time.

I hit one of my lowest moments around 4 months in. It's when I made my first post here. Know that I'm doing much, much better overall than I was then, even though my condition has actually worsened.

Stick with the CBT if you can. I found it insanely unhelpful for my tinnitus and ear issues directly, but indirectly, it gave me a lot of coping mechanisms that I apply to my life, and that has made a world of difference. Control the things you can control. Learn to recognize catastrophic thinking before you spiral. Use the ReSound app if you can mask. Get outside for natural masking/distraction. Distraction is the key for me, and therapy has helped me change my attitude about it (mostly). For example, instead of wallowing how I can't relax anymore, I focus on the joy of starting a new hobby/project and being so exhausted at night that I pass out. Easier said than done, but know it is possible. You'll find what works for you.

This works well for me when I'm really struggling: reminding myself that I don't have tinnitus tomorrow. I don't have anything tomorrow, as tomorrow isn't guaranteed for anyone. I tell myself to stop adding tomorrow's problems and suffering onto today's. They don't exist yet. There's always a chance (especially as early in as you are) that you could get spontaneous improvement/remission. I tell myself that will be me one day. They will find something and I will cry tears of joy when that happens, but I'm not going to let tinnitus destroy my life. I am a person who lives with tinnitus, tinnitus doesn't define my life. I am more than my problems (including tinnitus).

 

[IYIiKe]

I have low and high-frequency tinnitus, TTTS, hyperacusis, hearing loss, anxiety, and insomnia. But my TTTS is usually not much of an issue, and my hyperacusis is mild.

I'm still dealing with anxiety 2 years since my worsening. It tends to be the worst early morning, starting before I even get out of bed, and the best late evening, but sometimes it might get worse in the afternoon or early evening.

I've only found a couple of ways to reduce it. One is to take Lorazepam (Ativan) 0.5 mg, but I take it sparingly, usually in the morning on a bad day, and I almost always go multiple days without taking it to avoid tolerance. Nortriptyline 50 mg, taken for a few months, and Escitalopram (Lexapro) 10 mg, taken for 7 weeks, didn't help at all with anxiety. I have Hydroxyzine HCL 25 mg, but I only used that unsuccessfully to try to sleep better, so I'm not sure how effective it is for daytime anxiety. I have heard of it helping some people.

The most effective and safest way for me to reduce anxiety is to engage in about one hour of cardio-type exercise. For me, that was usually biking. The benefit seems to last hours but not overnight, and it doesn't improve my sleep. Lower-intensity exercise, like walking briskly, even with short runs from time to time, for the same amount of time, doesn't do much for my anxiety.

I do not have panic attacks or have a high heart rate when experiencing high anxiety.

I was given Hydroxyzine for anxiety before Sertraline -- didn't work for anxiety or sleep. Guess I'm just special.

Thanks for your input. I really do need to get out of the house, thankfully it's starting to warm up here which makes that not only easier but enjoyable.

Hello @IYIiKe, your message resonates with me, as I've walked a similar path with my tinnitus. Those early days were incredibly tough — I remember feeling constantly on edge, locked in a battle with that relentless ringing, to the point where I feared I might lose my mind. Reflecting back, my first year with tinnitus was so challenging that I leaned heavily on Xanax and seldom ventured outside my home. It was a struggle I honestly wasn't sure I would overcome. So, seeing you manage to do some work through these difficulties, speaks volumes about your resilience, even when the tinnitus makes everything feel harder.

Patience has proven to be a vital component of my journey. While three and a half months may seem like an eternity, it's still just the beginning. It took nearly a year before I noticed any significant change in how I approached my condition, and even then, progress was gradual. It's crucial to understand that it will get easier; not every day will be as tough as the ones you're facing now. The overwhelming fear that seems to dominate your life will gradually wane.

It took me close to a year before I began noticing a shift in how I approached the condition, and even then, progress was gradual. Over the span of two to three years, I experienced setbacks but gradually gained control over my tinnitus. It's important to acknowledge that everyone's journey is unique, and while it may be a bumpy ride, living normally with tinnitus is indeed possible.

My tinnitus, much like yours, is constantly evolving. The tones shift unpredictably, and unexpected spikes can throw me off balance. Yet, I've learned to accept these fluctuations as part of the journey. I've discovered that my reaction and attention to my tinnitus can amplify its volume, but for the most part, it's become little more than background noise. Mine is unmask-able and seems to compete with any noise I use to mask it.

Finding ways to reduce overall stress is important. Exercise has been a game-changer for me, not only in managing stress but also in boosting my spirits. Focusing on my diet and sleep. Additionally, slowly reintroducing activities that brought joy before tinnitus took center stage was incredibly beneficial. I understand that it may not be feasible for you right now, and that's okay. Start with small steps — perhaps a brief walk or stepping outside for short intervals, even if it feels uncomfortable.

Meditation has also been a powerful tool for me. Spending time in quiet reflection, especially during those uncomfortable tinnitus moments, has gradually desensitized me over time.

What if, because of overcoming this obstacle, you not only become an even more outgoing and fun dad for your daughter, but also someone who embodies resilience? You will have a sense of toughness and compassion for people that many don't and these will be invaluable skills to pass on to your children. Be patient and kind to yourself, keep exploring what works best for you — the rest will fall into place.

Brighter days lie ahead.

Thank you for the insight, kind words, being gentle and for your experience. It is very much appreciated. I am very sorry to hear you've had to go through much of the same.

I am starting to have better days, I think I will end up around your timeline for feeling better about things. The weather being absolutely frigid from onset til just about now has been a factor -- I know I need to get out of the house but just really can't right now.

Love the perspective.

I just want to chime in as a parent to a young toddler and soon-to-be mother of 2, that your children will still know you as the fun and loving person you were before - because you still are, you can be. Life isn't the same after tinnitus, don't get me wrong, but the vast majority of people are able to pull themselves out of the anxiety hole after a while.

I'm over 2 years in and just started clawing my way out of my anxiety hole a few months ago. I still struggle, I still cry. But I've learned how to mostly navigate my life with what I have and you will too.

First, get those custom earplugs. I didn't get them until I was a year in and they vastly improved my quality of life because it allowed me to lessen my anxiety around noise while not cutting it out completely. They are easy in, easy out. I wear them every time I play with my toddler, when they cry, or at "high risk" times like diaper changes and cleaning up after meals. (I do have TTTS/mild loudness hyperacusis too). If your daughter is bothering you, these are a good option. You don't have to use them all the time.

I hit one of my lowest moments around 4 months in. It's when I made my first post here. Know that I'm doing much, much better overall than I was then, even though my condition has actually worsened.

Stick with the CBT if you can. I found it insanely unhelpful for my tinnitus and ear issues directly, but indirectly, it gave me a lot of coping mechanisms that I apply to my life, and that has made a world of difference. Control the things you can control. Learn to recognize catastrophic thinking before you spiral. Use the ReSound app if you can mask. Get outside for natural masking/distraction. Distraction is the key for me, and therapy has helped me change my attitude about it (mostly). For example, instead of wallowing how I can't relax anymore, I focus on the joy of starting a new hobby/project and being so exhausted at night that I pass out. Easier said than done, but know it is possible. You'll find what works for you.

This works well for me when I'm really struggling: reminding myself that I don't have tinnitus tomorrow. I don't have anything tomorrow, as tomorrow isn't guaranteed for anyone. I tell myself to stop adding tomorrow's problems and suffering onto today's. They don't exist yet. There's always a chance (especially as early in as you are) that you could get spontaneous improvement/remission. I tell myself that will be me one day. They will find something and I will cry tears of joy when that happens, but I'm not going to let tinnitus destroy my life. I am a person who lives with tinnitus, tinnitus doesn't define my life. I am more than my problems (including tinnitus).

I'm sorry you had to deal with all of that while going through all of the typical parenting challenges simultaneously. My daughter is my world, and while I get those moments where I fear I won't be able to hear the "dada?" that melts my heart right now, I know that it's mostly unfounded fear that will dissipate with time when I can dig myself out.

It's definitely a journey though.

 

[cullenbohannon]

Thanks for the shot in the arm here. I am struggling with the avoidance and not wanting to leave home but then being stuck in my own head at home with the inescapable ringing. I have sound sensitivity only in my right ear (hyperacusis ), and it's produced TTTS pain and tension on that side of my face so now I have this gnarly combo of tinnitus, hyperacusis, central pain, and have associated sound with pain.

When you were afraid to leave home, was it because of an underlying sound sensitivity or discomfort caused by the tinnitus? I think my hyperacusis really might just be an incredibly reactive tinnitus that has morphed with my underlying anxiety disorder. The "pain" I feel is likely my own middle ear muscular tension and jaw clenching and tense neck/shoulders that can bring about a migraine. I manage to go to work but come home but my social life has gone away. I never thought life could get so messy.

Thanks for sharing what you're going through — it really does take guts to open up about these struggles. I've been there, dealing with a mix of sound sensitivity and the discomfort of tinnitus that made leaving home feel like running into a bee hive. The constant ringing in my ears, along with intense stabbing sensations and facial spasms, made the thought of facing loud or unpredictable noises outside pretty daunting. For a while, staying in felt like the safer option, and honestly, it was necessary to give my nervous system a breather. My hyperacusis started like 6 or 7 months after my tinnitus and I dealt with it on and off for years.

Eventually, I mustered up the courage to venture outside, but I stuck to quieter places like parks and avoided bustling streets or restaurants like the plague. Nowadays, I hardly ever wear earplugs unless it's a particularly noisy event, like a wedding. It's been a journey, but I've learned that giving myself time to destress is crucial. Things do get better, and slowly exposing myself to gentle sounds like white noise or the rustle of leaves, sounds that made me slightly uncomfortable helped a lot to build tolerance again. It's all about training your nervous system to chill out, even if setbacks happen along the way, which they will. To this day I have reactive tinnitus unfortunately, but it does little to control my life.

You don't need to go anywhere to stressful, maybe grab a coffee or go to a bookstore with someone, walk around the block. Just make yourself get out of the house from time to time. I used to wear earplugs when walking my dog, and everytime she barked, my face tensed up and my ears went fuzzy and numb from the hyperacusis. I thought my life was over — but I am still here. Here's the thing, when you do leave the house, you will unavoidably run into loud noise that will put you into a panic. With hyperacusis and TTTS it can cause serious discomfort and pain... but you will be ok.

You're dealing with a whole whirlwind of challenges — hyperacusis, tinnitus, central pain — and I get how it can make simple things like socializing feel like climbing a mountain. And your insight about hyperacusis possibly being linked to your anxiety disorder is spot on. Our bodies and minds are pretty incredible in how they create these intricate connections, huh?

But here's the thing: that reptile brain of ours can really throw us for a loop, putting our nervous systems on high alert for anything and everything. It's in protective overdrive that can treat everything like a threat, producing anxiety and other strange symptoms like hyperacusis and TTTS, and then we react to that with... MORE ANXIETY. It's a vicious cycle. But recognizing that is a big step towards breaking the cycle. It's a slow process with ups and downs but your life is not over. Be patient with yourself, meet yourself where you're at, it's okay to take your time with recovery.

 

[IYIiKe]

As an update, I've had an MRI—clean. I've been on Astepro for a couple of months with no effect.

I still have ETD, reactions to dishes clanking, and occasionally light switches (decreased sound tolerance) that my doctor seems to ignore when I explain them. The loud thump (I suspect it was my stapedius) that used to occur has decreased/doesn't happen; just the temporary ear fullness from those noises remains.

I have given up trying to find a cure or that it might get better. I am trying to acknowledge to myself that the noise is harmless and I am safe when I hear it. I am trying to reframe it from the negative connotations I assign it. I can't say it's necessarily helping, but I do seem slightly less distressed as of late. The volume fluctuates, but it's always there. The lowest it'll go is a two sometimes if I get lucky and get good sleep. Sleep has been a significant problem, as well as morning anxiety in particular. I am unable to sleep more than 4-5 hours without waking. I am practicing ways to remedy it. Changing beds previously didn't help. I am trying progressive muscle relaxation but without the frustration, if it doesn't work that sends me into a spiral, and the same goes for breathing exercises. I was able to get a solid 6 hours last night, which is amazing for me, as I've survived on several days of 3 or less. It still scares me sometimes, mostly when I'm alone at night, and it's quieter. I am a night owl, and the night was my favorite time of day because it was/is so peaceful. I am hoping continuing to reframe my feelings about it may lead to a day I will regain my happiness at night again some day.

I went to an audiologist, and they set me up with a woman who not only has tinnitus but two cochlear implants. She has helped me gain some perspective and understand how hard it is to deal with the condition.

 

[momus]

Feeling anxious about one's tinnitus is perfectly normal. Who wouldn't be? Especially in the beginning. I've had tinnitus for decades, so that fear that it will always be with me at very loud levels and could lead to suicide has resided. It has not disappeared, but it is almost never present. If it hasn't happened after all this time, I can let go of it.

It goes up and down, going pretty crazy sometimes and almost disappearing other times. I hear this from other members, too. It's the nature of tinnitus.

Reminds me of relationships. They can go along fine, then go completely off the rails. When they're going well, they're lovely; when they go to hell, they're awful. Thank goodness all things are impermanent. That's something we can rely on. If things go really bad, eventually, they will change.

 

[MidnightOilAudio]

Jiu Jitsu and weight-lifting.

 

[Pinhead]

Jiu Jitsu and weight-lifting.

I miss weightlifting. I'd gone four or five times a week for roughly four years. It started to spike my tinnitus every visit. I would ignore it, knowing it would go down soon after I finished training. Then, I had a permanent tone appear at the gym one day.

Now, it's traumatic just for me to walk in the front door of the gym. I haven't found anything that helps with my anxiety. I spend every day on high alert.

 

[MidnightOilAudio]

I miss weightlifting. I'd gone four or five times a week for roughly four years. It started to spike my tinnitus every visit. I would ignore it, knowing it would go down soon after I finished training. Then, I had a permanent tone appear at the gym one day.

Now, it's traumatic just for me to walk in the front door of the gym. I haven't found anything that helps with my anxiety. I spend every day on high alert.

I mean, you'll never know whether it would have appeared anyway, gym or not. But yeah, there's no way NOT to associate that new tone with the gym.

To be clear, I hear mine at the gym the entire time. And like yours, mine spikes during my workout and for about a good hour afterward.

But Jiu Jitsu is the time where I have the longest stretches of time where I don't think about it because I am literally fighting for my life in 5-minute increments (rounds). It's dangerous but paradoxically very therapeutic for me.

 

[IYIiKe]

My ENT has me scheduled for Eustachian Tube balloon dilation.

Honestly? I'm kind of excited. It's the only symptom that seems treatable. My Eustachian tubes simply don't work. If I drive and encounter ~50 ft in elevation change, I have negative pressure, and apparently, my ENT was able to see my eardrum sucking right back when I popped my ears in the office.

There are not too many negatives or drawbacks, so I am trying to view it as a positive. Thankfully, I have good insurance, so it should only run me ~$200-300 out of pocket with the Propofol nap included.

 

[Jammer]

My ENT has me scheduled for Eustachian Tube balloon dilation.

Honestly? I'm kind of excited. It's the only symptom that seems treatable. My Eustachian tubes simply don't work. If I drive and encounter ~50 ft in elevation change, I have negative pressure, and apparently, my ENT was able to see my eardrum sucking right back when I popped my ears in the office.

There are not too many negatives or drawbacks, so I am trying to view it as a positive. Thankfully, I have good insurance, so it should only run me ~$200-300 out of pocket with the Propofol nap included.

It's good that your ENT has scheduled you for Eustachian Tube balloon dilation.

Tympanostomy tubes is the other surgical approach to ETD. Unfortunately, many people has issues with tubes even after their removal.

 

[PennyCat]

Your story sounds similar to mine, although I don't think my tinnitus is reactive (but certain sounds cause distortion - I hear a Morse code beeping over fans, A/C, etc). I had pretty severe TTTS to the point where I couldn't even talk without my left ear thumping. My ear burned from the constant flexing of the muscle. My tinnitus would also get worse every three months like clockwork; 1-3 new tones would appear.

I have pre-existing anxiety disorders and OCD, and all of this drives me over the edge. All of this started for me in December of 2022. By April of last year, I was such a mess that my therapist said I really needed to consider an outpatient program. And so I joined one pretty much exactly a year ago. It was 3 hours a day, 3x a week, and I did it for ten weeks. One of the rules of the intensive outpatient program was you have to be on medication. I was terrified it would make my tinnitus worse, but I'd been on antidepressants since I was 13 and stopped them when my tinnitus started, so I knew I really needed to be on them.

A few weeks into the program, my TTTS went away. Then it came back a few weeks later, then went away again, then came back... discouraging, but it was progress! I fully believe my TTTS was activated by my severe anxiety around my tinnitus. This isn't the case for everyone with TTTS, but for me, working on the anxiety helped a lot.

Today, my TTTS is mostly nonexistent. I have a few flare-ups here and there where it'll come back for a few days, but it is SO much better than it was last year. I was crying constantly over it, worried that it would never go away and I'd never be able to speak without discomfort again. But time + working on my anxiety helped.

I still have multi-tonal tinnitus. I hear it 24/7, but sometimes I don't "hear it" (I am able to tune it out). For people with tinnitus, this is a big win. I guess I have habituated to a certain extent. It still bothers me sometimes, I still get anxious over it sometimes, and I certainly don't enjoy having it. But compared to how I was last year, where I was throwing up from anxiety, losing weight rapidly, not sleeping, and crying constantly, I'd say I'm doing okay.

Sorry for this novel of a read. I really hope it can bring you some comfort or reassurance. I guess the TLDR is - medication (which is a gamble, I know), therapy weekly, doing an intensive outpatient program geared towards anxiety, and the passage of time helped me cope. I wish you the best of luck and hope you hang in there.

 

[dipp]

My ENT has me scheduled for Eustachian Tube balloon dilation.

Honestly? I'm kind of excited. It's the only symptom that seems treatable. My Eustachian tubes simply don't work. If I drive and encounter ~50 ft in elevation change, I have negative pressure, and apparently, my ENT was able to see my eardrum sucking right back when I popped my ears in the office.

There are not too many negatives or drawbacks, so I am trying to view it as a positive. Thankfully, I have good insurance, so it should only run me ~$200-300 out of pocket with the Propofol nap included.

Will you report when the dilation is done? Recently, I was diagnosed with pressure in the left ear through tympanometry. I was referred to the allergy doctor, but I would like to know more about my options in this regard.

 

[IYIiKe]

Will you report when the dilation is done? Recently, I was diagnosed with pressure in the left ear through tympanometry. I was referred to the allergy doctor, but I would like to know more about my options in this regard.

Sure. I don't have any hopes of it helping with my tinnitus, because my tinnitus came after a pretty obvious reaction with Sertraline. However, I hadn't noticed when Eustachian Tube started being dysfunctional. I work from home, and unless I'm driving, I don't experience sudden elevation changes on the day, etc. But it's very noticeable when driving. I anticipate it will either help with that one symptom and potentially alleviate some other minor symptoms -- or, at worst, be ineffectual.

You can read up on the procedure here:



As someone else mentioned, grommets are simply not necessarily a great option. There aren't any risks associated, and recovery is quick. I can return to work the next day and should see some benefit within two weeks.

 

[KaiT81]

I hear it 24/7, but sometimes I don't "hear it" (I am able to tune it out). For people with tinnitus, this is a big win. I guess I have habituated to a certain extent. It still bothers me sometimes, I still get anxious over it sometimes, and I certainly don't enjoy having it. But compared to how I was last year, where I was throwing up from anxiety, losing weight rapidly, not sleeping, and crying constantly, I'd say I'm doing okay

Thank you for your post. It gives me some hope.

I've got tinnitus from an ear infection in February 2024. Now I am in my sixth month with it and still heavily struggling with anxiety and still often have mood swings, depressed feelings, anger, and sleep problems. I am eagerly "waiting" for the habituation to kick in.

As I understand you, you had to go for over a year until things really got better and you could start to tune that noise out. Is that right? Can you give me a few tips on how you persevered or what helped you to habituate?

 

[IYIiKe]

It depends on the website you're looking at. Still, I see anywhere from 6 to 24 months. Keep in mind that relapses are inevitable; get comfortable with that fact and with the fact that it's okay, and you will eventually recover.

I am at month 8. Over the past couple of months, I have only begun to realize that there is a future again.

I won't sugarcoat it or lie to you and say my tinnitus is any better than day one because it's not. It's the same, sometimes mostly loud, sometimes super intrusive, but briefly occasionally like today -- sometimes not so bad loud noise that doesn't bother me either.

I have extremely bad spikes right before I get sick, for example. I don't even feel sick, but I am only now realizing that this is a sign that I may not be feeling well. Sure enough, a cold starts up, and ironically, I actually get a few days where it is less than normal when that starts, only to return to high pitch about a week after I start feeling symptoms and then back to baseline.

I think time also helps you realize you haven't died or anything, and you start feeling better about how you deal with the lows, too.

I would stop expecting improvements at arbitrary dates and try to focus on how you are slowly getting better at dealing with things daily. If you keep trying to measure against arbitrary "I should be better" dates, and you're on Tinnitus Talk and likely are impacted severely -- you will be disappointed. Try to stay positive even when it sucks. Do what you need to to get through the day.

 

[bobvann]

I'm in my 8th year and not even close to any form of habituation. I'm glad it works for some.

 

[PennyCat]

Can you give me a few tips on how you persevered or what helped you to habituate?

I'm not sure if there's any particular thing that helped me; I think it was a combination of things. I focused a lot on distraction. I watched a lot of YouTube and TikTok, read a lot of books, played a lot of video games, discussed my tinnitus in therapy, and did an outpatient anxiety program.

• I think the distraction helped me a lot. I started playing video games again about 5-6 months after my tinnitus onset. At first, I was constantly aware of my tinnitus - thinking about it and checking on it frequently as I played. As the weeks and months went by, I slowly began having periods where I wouldn't be monitoring it as often; short periods at first and then longer. It got to a point where although I could/can hear it 24/7, I wasn't constantly "hearing it." It's like how you might not consciously notice the sound of a fan or the AC all the time, even though you can hear it.
• Another big thing that helped me was reading a book outside. I would sit outside all afternoon and into the evening reading, as the outside sounds helped distract me and slightly drown out my tinnitus. It was also relaxing, which helped ease some of my anxiety levels.
• Therapy was, and is another big help. I learned coping skills that apply to everyday life as well as coping with tinnitus. But I know therapy is not accessible to everyone.
• I sleep with a fan on + fall asleep with ASMR playing softly from my phone speakers. I used to use a sleep headband (headband with speakers) to play some brown noise and cricket noises to fall asleep to. Both of these things helped me a lot at night. And I still fall asleep to ASMR - although I probably don't need it to sleep anymore, it's relaxing and a pleasant noise distraction.
• The last is just the passage of time. It was hard for me for the first year, especially because of how my tinnitus consistently worsened every three months. It's hard to hang on and to persevere. I know that because I experienced it. And I still hate having tinnitus. I still think about it daily. But when I think about it, it's with much less anxiety and more just plain annoyance. It's there, and it sucks - I can hear it right now, and I wish I didn't. But I am doing much better now than I was last year. And I bet next year I will be doing even better than this. It's a long process, and I had many setbacks, much of which are documented on my profile page. But if you can hang on and push through, I would say the odds are in your favor!

 

[Utdmad89]

My tinnitus was getting slightly better, but 13 months after its onset, I got hyperacusis, and now I have noxacusis. I'm incredibly jealous of those who don't have hyperacusis/noxacusis.

 

[ScrollDownPlease]

Another big thing that helped me was reading a book outside. I would sit outside all afternoon and into the evening reading, as the outside sounds helped distract me and slightly drown out my tinnitus. It was also relaxing, which helped ease some of my anxiety levels.

During the first few days of my spike, I frequented this little pond with running water, which created a nice ambiance. It was nice to visit since it didn't feel like I was turning on a sound machine to drown out the tinnitus. I brought my Kindle and was able to read for a bit. It was quite calming.

I still think about it daily. But when I think about it, it's with much less anxiety and more just plain annoyance. It's there, and it sucks - I can hear it right now, and I wish I didn't. But I am doing much better now than I was last year. And I bet next year I will be doing even better than this.

Yeah, I feel the same way too. Fortunately, it didn't take too long for my anxiety to manifest into annoyance. I remember being so anxious about whether I could sleep that night, but now I'm just slightly annoyed, and it's more of a passing thought. I'm fortunate that my tinnitus isn't that bad, which made me habituate sooner rather than later, but it still gives me that underlying sense of anxiety every now and then

I'm glad you're able to push through this tinnitus

 

[KaiT81]

• I think the distraction helped me a lot. I started playing video games again about 5-6 months after my tinnitus onset. At first, I was constantly aware of my tinnitus - thinking about it and checking on it frequently as I played. As the weeks and months went by, I slowly began having periods where I wouldn't be monitoring it as often; short periods at first and then longer. It got to a point where although I could/can hear it 24/7, I wasn't constantly "hearing it." It's like how you might not consciously notice the sound of a fan or the AC all the time, even though you can hear it.

• Another big thing that helped me was reading a book outside. I would sit outside all afternoon and into the evening reading, as the outside sounds helped distract me and slightly drown out my tinnitus. It was also relaxing, which helped ease some of my anxiety levels.

Thanks a lot for the tips! I've often heard about reading a book (especially outside) and playing a video game, and I enjoy both!

So far, I have mainly masked my ear noise, and only in the last few days have I started to face and listen to it more. Complete masking was certainly not conducive to habituation.

When I sit down and read and hear it all the time, it annoys me that I can't block it out. But the whole thing is probably a matter of practice. Can you confirm that the fading out for 2 minutes, 5 minutes, and hours only happens gradually? Can you encourage me to stick with it again, do something I enjoy, and give it time to improve?

 

[RunningMan]

If your tinnitus gets worse, you can slowly or suddenly dishabituate. I had been pre-habituated to mild tinnitus for 20 years or so, but as it slowly got worse year by year, I started noticing it more and a little more bothered by it, particularly during the evening in a quiet room or when trying to sleep (fans/filters didn't mask it).

So I was slowly dishabituating already, and then my tinnitus suddenly turned severe 2 1/2 years ago, and that caused me to become completely and permanently dishabituated. In addition to being severe, my tinnitus varies a lot from day to day and can vary in sound and intensity even over the course of a single day. I also have hearing loss, TTTS, loudness hyperacusis, anxiety, insomnia, and pains (stomach).

My baseline anxiety is pretty much as high as it ever has been in the last 2 1/2 years. However, it varies, and it is helped temporarily with exercise or low-dose Lorazepam on occasion. To sleep, I'm currently using two sleep medications to get a fair amount of broken sleep. I tried Melatonin and many other supplements, even a few antidepressants, which never helped me.

 

[Cmspgran]

I feel your suffering from your posts @RunningMan. I'm praying for you, myself, and many others that Dr. Shore's device returns some form of quality of life.

 

[PennyCat]

Can you confirm that the fading out for 2 minutes, 5 minutes, and hours only happens gradually? Can you encourage me to stick with it again, do something I enjoy, and give it time to improve?

Of course! It definitely was gradual for me. I remember last summer, I was getting back into Skyrim, and I could hardly focus on the game because of how much I was actively listening to and checking on my tinnitus. The stretches of time where I wouldn't think about it or "hear it" were very small at first, but they did gradually increase. It wasn't linear, though; I had many setbacks while I was habituating, which is normal (but upsetting). If you can forget about it for a minute, 5 minutes, 10, then that shows your brain is capable of tuning it out to some degree and that eventually you will be able to go even longer stretches of time. That's what I would try to tell myself when I was really anxious and caught myself monitoring it.

I cannot stress enough how much of it really is just the passage of time and kind of a waiting game. It's slow, and it's painful. As I mentioned, I had many setbacks during my first year because my tinnitus would worsen/add new ones every three months. Every time I thought it couldn't get worse, it did. But now I'm relatively okay with my tinnitus. I still have my moments - I'm listening to the orchestra of sounds and distortions as I type this. I'm a bit anxious about it. But I know in a little while, I will stop actively listening to it again and be okay. I didn't think I would ever get to this point. I have autism, OCD, and a large collection of other disorders. I thought I could never adapt to life with tinnitus, not because I think my tinnitus is worse than everyone else's, but because of how my brain functions (and/or doesn't function). Tinnitus is a sensory nightmare, and my autism and OCD have had a field day with it. But I have adapted to it with time. I still think about it sometimes and hear it periodically throughout the day, but 90% of the time, I don't. I try to take that as a win!

I hope that habituation won't be the best option in the near future. I hope we can have a cure for tinnitus, or at least a way to significantly reduce the sound levels and suffering that come with it.

But for now, hang in there and stick with it! Distract yourself, play some soothing sounds to help you sleep, and do things you enjoy despite having tinnitus. If I can do it with my extremely disordered brain, I believe you can

 

[Anthony2019]

If you have moderate to severe hearing loss, a pair of hearing aids may help. They have dramatically helped me. You will know within 10 minutes of trying them if they will help you or not.