Managing Anxiety About the Future — How Will Tinnitus, Hyperacusis and TTTS Affect My Life?

Hi all. I'm 21. From the UK. I'm just after some advice if anyone has any to share.

I've been living with what I would say is mild tinnitus for nearly 2 years. Whilst it was a lot for me to deal with, and I'm obviously annoyed I didn't protect my ears beforehand, I'm pleased with how I got straight into protecting my ears in loud places.

I have been struggling a great deal with anxiety about the future. My symptoms seem to have worsened, developing what seems to be TTTS and mild hyperacusis and finding myself bracing and assessing a sound 'damage' everytime I hear one. I fear this is leading to me worsening, but I also worry that even with all the protection from loud noises, that I'm destined to be a full pain hyperacusis sufferer.

I'm worried that I'm going to miss out on life, like finding a girlfriend/wife and starting a family as I'm struggling to see a future for myself if I keep worsening, even when protecting my hearing in genuinely noisy environments.

The only next step to prevent any more damage that I see is to step back from university and all of my hobbies and just live in a room but I obviously don't want that if possible.

Thanks.

 

Hi @ewsclass66,

I am in a similar situation but I am 44. My tinnitus is already very severe. The only advice I can give you is to live day by day and try not to think too much about the future. Just try to live your life with some sensible level of protection, just read your body, but yes, you will have limitations that you will need to get used to. It will take some time but you will reach a place where you no longer think of these limitations as such.

 

Life almost never goes according to plan. Sometimes it surprises to the upside, sometimes to the downside and sometimes it's just different. You reassess and plot a new course. On any given day we look at what we have to work with and then go make amazing things happen with our lot. We cannot control everything and need to accept this. It may not be what we originally envisioned but there are relationships and good work for every variation of human kind. We are resilient amazing creatures but things go wrong. We get injured, we get sick, we develop limitations, especially as we age. It's natural and normal. It's all part of the human condition. Millions all over the world face these challenges and go on to lead wonderful lives. Hellen Keller was handed some serious challenges, some may even say a galactic shit sandwich but yet she saw life like this:

“Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved.”

― Helen Keller​

Meaningless words, trite throw away lines, psycho babble bullshit? Not for me, especially not coming from someone who was given much less to work with than most of us and overcame her limitations.

It's not lost on me how difficult things like tinnitus and pain hyperacusis can be, I have them both. I have suffered great loss recently and have other illnesses. I understand suffering. Sometimes it's hard to face or deal with these things but we must, what other choice do we have, give up? I for one will never do that, I will never give up. People have overcome far worse problems than mine to go on to achieve great things. For one person who prizes a constant crowded noisy party atmosphere with people everywhere, there is another person who prizes a quiet, relaxed environment so they can write, paint, invent, solve the mysteries of the universe.

Let's get real, if you develop severe pain hyperacusis and you used to be very social or worked in a noisy industrial business then you will probably need to change things up. Treat it like moving to a new town and imagining how much fun that will be. Start imagining what exciting things you can do with your new situation.

BTW, these introverted people, that work in relative silence to achieve great things, often had life long spouses. There is someone for everyone. Sure the party girl may not want to stick around to face the limitations now presented but there are just as many girls (or guys) that want peace and quiet, they like hanging out at home chilling, cooking, reading books, going for walks. There's always a way to work with every situation.

Sure you may not be able to have the life that you originally imagined so imagine a new life that works with what you have. Accept this condition, embrace it, make it your friend or tell it to f&%k off if that's your thing and then figure out the next chapter. There are many techniques taught here to help deal with the sounds to help you cope. They don't work for everyone but I think they can work for most. Then it's on to your new life that respects your challenges. It starts with us. We have to make peace with this and then find what works and get on with it.

George

 

I needed to read this today. Thank you George.

Daniel

 

You are welcome. Let tinnitus be your teacher, not your enemy. You are capable of more than you know.

George

 

Thanks for this George. I will try and stay positive and hope for a cure like the rest of us, I guess.

Thanks.

 

There's a high chance you will get at least somewhat better. Just be extra careful in loud places now, wearing earplugs and earmuffs more so that it won't get worse.

 

You are such a good person George. You try helping others on here whether their tinnitus is severe, moderate or mild. We need more really good folks like you in this world. Your posts are very encouraging, thoughtful, inspiring and just well written. We need more positivity on here so it’s good to have you as a member here.

 

@Ava Lugo, thank you, that’s very kind. You are very kind.

George

 

What's tinnitus trying to teach me?

 

That life ain't fair, and that we shouldn't take life and being healthy for granted. Life is fragile, and our path can be unpredictable and challenging at times. However, in the end, even though you may feel "beaten up" now, it can make you stronger.

 

We are all different and when tinnitus arrives we are all at a different place in life so I don't know the exact answer to your question for you, you will have to go on a journey of discovery. That said, here are some general situations that I have experienced, have read here, or learned on my journey of loss, health and suffering. I am not a medical professional and these are just my person experiences and observations. There are many great books and/or professionals that can help with these things. I don't know your situation so I don't know if these apply for you but might get you thinking about what does. Tinnitus can really test us as can all chronic illnesses like chronic pain or trauma. These can be connected for some as they have been for me:

Control. For some they exert extreme control over everything and claim perfectionism as a badge of honor while all this time they have made perfect the enemy of the good. It can strain relationships, work and prevents getting to the bottom of the real issue. Perfectionism is a coping mechanism for fear and anxiety sometimes brought on by trauma or deep insecurity, issues with self worth. Tinnitus is an extreme loss of control and if this has been an issue (not everyone) then the emotional reaction to something 24/7 so impossible to avoid that you have no control over can really bring on a crisis. This can be turned into a positive, the wake up call to face constant perfection as a coping mechanism. Learn to accept that in life sometimes shit happens and we have to roll with it. Of course if the result is a serious problem like tinnitus then we need to address it but not by fighting it, fearing it, panicking over our inability to keep it away from the start.

A need to be sick, actually fearing its departure. Some here panic if the tinnitus starts to go away and go to a quiet room to find it again. It defines them, they are drawn to it. Why is this? What mechanism has drawn someone to something that most people would be glad to get rid of. What can be learned is why does this happen? It has probably been happening in many other places in that person's life. Resolve this and potentially resolve many other issues.

Relaxation. Some people are naturally hypervigilant, they can't relax. They are always on high alert in fight or flight mode. This has been affecting them negatively for years. Generalized anxiety, depression, panic attacks, ... When tinnitus arrives all hell breaks loose because they go into a panic/fear/anxiety loop. Can't sleep, can't relax, can't concentrate, can't even work in some cases. The need for containment of this situation can send us to finally learn how to break that cycle, discover why we have had this for years, focus on breathing and be in the moment more relaxed.

There are so many examples but this can get you started. Many here have reported that as a result of working on this they "are a better person", "appreciate life more", "have learned a lot about myself", ...

As always, these and any other discussions may not apply to everyone and for those at the extreme end of the tinnitus scale I am deeply sorry for your suffering. I am sorry that you have struggled to find something to help you. If my words here do not help you find relief I hope that you find something in time. Maybe even a cure.

BTW, there are hundreds of examples to choose but I made sure to pick examples that have applied to me.

I hope this answers your question.

George

 

@MindOverMatter, @GeorgeLG, thanks for your responses. I don't know why I even asked that question. I guess that's what happens when you're awake in the middle of the night. I don't think tinnitus is trying to teach me anything, just asking how much suffering can you put up with?

What a vile condition this is. Sorry...

 

No problem. I hope you find many good days. I can also tell you that getting sick has helped me develop more empathy, I am kinder to the good people in my life and it has made those relationships closer. I now understand better what other people go through. Take care.

George

 

Hey man. I'm around your age too and have what would probably be described as towards the worst end of moderate tinnitus and also mild hyperacusis along with some other health issues. I am still in university now and still managing some crazy work loads even for a person without these sorts of issues and it's pretty difficult not to fixate on such things especially after reading some of the scary stuff on this website. It's definitely good to heed warnings and take precautions but being obsessed with it as I learned the hard way amplifies it a lot. The endless distractions of staying busy help.

I also have a couple friends who I was in school with that are also out doing rather difficult things in university who have tinnitus and hyperacusis ranging from mild to moderate that are not on this forum. You certainly need to adjust and avoid really loud places entirely but it doesn't exclude you from living your life. I still do my hobbies for the most part and socialize. I personally don't have a significant other at the moment but have gone on dates and a few of my friends that have hyperacusis have good relationships. It's totally doable despite it being more difficult so don't lose hope yet.

 

@GeorgeLG, thank you for sharing the beautiful post above. It's very inspiring, and gives me hope. I just developed tinnitus recently, and it's been scary and debilitating. But so far I'm still battling, and have hope.

 

@Jonnie, welcome to the forum. Many get better with time and you are new to this so there is much reason for hope. In the meantime stay relaxed and distracted with fun or constructive things, stay out of the scary threads and try to imagine being perfectly able to handle this, that it can’t hurt you. Your emotions and reaction to this have a lot to do with your outcome. Be sensible and protect when it makes sense to give your system the opportunity to settle down. Now if I have a spike or loud exposure I protect up and go do a project with a positive outcome. It flips the script so that every event results in something good. My tinnitus is still there but I don’t care about it anymore, it almost never bothers me. It is loud and crazy enough to distract me a few times a month but that’s completely manageable. I have no idea what the future will hold but I have learned how to deal with it better in the present so that’s what I focus on. More good days.

George

 

I had/somewhat still have catastrophic reactive worsening tinnitus that gets worse from noise that wouldn't even make a normal person flinch. I still keep my head up and enjoy life as much as possible, see friends, go places, even though my life is extremely limited. I am lucky that I did not enjoy places like concerts or bars/clubs anyways, so I'm not missing out on much.

I'm hoping XEN1101 really pulls through for us catastrophic sufferers, and there are some other promising things that will be available not too far in the future.

 

Years ago, I took two college courses with the American Psychological Association. I still have material given by them. This awareness was very helpful with medical care employment.

After high school, but before college, I was a crisis hotline volunteer - Friday and Saturday nights. We had six weeks of training, homework, coaching scenarios and exams. I was unsure of the crisis hotline Director, because he didn't want us saying - I understand. He didn't like us showing compassion, and with that, he said, you probably don't know the severity of the person without meeting them.

According to the American Psychological Association, the characteristics of anxiety include tense feelings, worried thoughts, and physical changes such as increased blood pressure and body heat.

Oxidative stress is considered to be one of the molecular underlying causes of tinnitus.

The results of this study reveal that in tinnitus cases, the oxidative stress and antioxidant enzyme imbalance were more significant than in the healthy control group.

A Comprehensive Study of Oxidative Stress in Tinnitus Patients - PubMed (nih.gov)

Experiences can make someone more prone to tinnitus: Oxidative stress and antioxidant enzyme imbalance, fear trembling, rapid heartbeat, immune system, hypersensitivity, separation anxiety disorder and heredity is at 45 percent. Much on this list can cause brain chemicals to change. Cells and nerves near the ears can become sensitized. Central and peripheral nervous systems are more alert.

Anxiety is not the same as fear, but they are often used interchangeably. Anxiety is considered a future-oriented, long-acting response broadly focused on a diffuse threat, whereas fear is an appropriate, present-oriented, and short-lived response to a clearly identifiable and specific threat.

For the last several years, I volunteered with a community healthcare group. My contribution was online and it was mostly for physical tinnitus. I had to quit because of my health.

They have promising results for many with tinnitus with anxiety association. The program consist of: Oxidative and antioxidant enzyme imbalance control, improving immune system, blood pressure control, hypersensitivity counseling, separation anxiety counseling, radiology review, posture, blood and hearing tests.

 

@Greg Sacramento, as usual, eternal thanks for the work you have done and continue to do in the service of others.

Can I ask: are you aware of the reasons behind the link between separation anxiety and tinnitus? Or do you have anything to add on that?

I hope that whoever is up there gives you comfort as you have given so much to others.

Best wishes.

 

@Greg Sacramento, thank you.

George

 

With tinnitus - not wanting to be separated from others or the unfortunate condition that separates them from others. Wanting to belong, but not able. Includes physical - hyperacusis, reactive tinnitus and noise.

They treat difficult emotions, feeling of doom, and development of phobias. Agoraphobia - panic disorder.

They use dialectional behavioral therapy and cognitive behavioral therapy - talk therapy.

There is no known way to prevent separation anxiety disorder, but it can diagnosed and treated.

Patients include infants with hearing loss and apparent tinnitus.

Tinnitus caregivers have tinnitus.

Patients are seen in a pleasant office setting, but they often visit patients who wish not to leave home.

Patients can reach caregivers by cell phone, but no online assistance for emotions. Patients records are confidential.

 

@Greg Sacramento, I am reading a book now by a trauma expert discussing the effect of traumatic stress on physical health and treatment strategies, fascinating stuff:

“The Body Keeps the Score...”

Your life’s work is fascinating.

I’m 100 pages in and can’t put it down.

George

 

Hi George, I haven't read the book, but will see if there's an online summary.

 

@Greg Sacramento, are you asserting (or stating that others have found) that in some people, tinnitus may well stem from their separation anxiety? As if the fear (read "anxiety") of separation may somehow create a physiological response in the body that, in a figurative sense, drives a wedge between the sufferer and the representative "other"?

@GeorgeLG, let us know if you come across tinnitus in there. My therapist spoke about a sort of "trauma" with me today - as in so many things happen that, at some point, things become overwhelming and may trigger a sort of reaction as if one had suffered a trauma. It's very interesting.

 

Sometimes I still feel jealous of people that don’t suffer from intrusive unmaskable reactive tinnitus. Yesterday, online, I read people with reactive tinnitus commenting about how they miss being able to listen to the rain. I told them I feel jealous of people that are able to listen to rain without the tinnitus riding on top of it making it hard to clearly hear it and another person responded that they feel the same that others don’t have to go through this type of tinnitus everyday.

I mean there are times I hear it reacting and riding on top of external sounds a lot but I try to change my emotional response to it competing with sounds but sometimes it’s hard because the tinnitus is hard to ignore. I have to be really busy and interested in what I’m doing to not notice it for like 7 minutes. I hear it most of the day though.

Some people say it’s impossible to habituate to reactive tinnitus unless it becomes maskable but I have had mine for almost 3 years now and I personally feel like I can cope a little better but still have days where I mourn my old mild tinnitus life.

Other health issues are starting to come up for me as well like gritty dry eyes. I’m only 26 years old but the older I get, the more other health issues are starting to show. When I had mild tinnitus back when I was 23, I had no health issues besides hearing loss. Now I have dry eyes and worse floaters and reactive tinnitus.

Sorry, I’m just getting stuff off my chest. Didn’t have the greatest night last night lol.

 

I fully understand your feeling, and it's okay to have such days. We all have them.
To me though, it seems like you're heading in a direction where it will become less bothersome to you.

I don't agree with those "other people". When unmaskable reactive tinnitus comes to a point where it's pretty much non-intrusive to you anymore - for pretty much most of the time - you are, more or less, habituated. Meaning that you can live a normal life, even though heavy rain sounds and such is felt on top op your tinnitus. Your brain won't treat it like a threat no more.

Stay strong, @Ava Lugo.

 

Tinnitus is mostly caused from noise, certain medications or from medical problems. Other list of things that may have weight is a mile long, comparable to what causes headaches.

It's hard to prevent headaches and it's also hard to know everything that may be a tinnitus causing factor. To know and do everything, or not, to live a safe life is impossible. Heredity - genes - can we change them - no.

Most who come to Tinnitus Talk have tinnitus and few come here to find ways to prevent tinnitus. We talk about what to do next.

You do have a valid question, I just don't know how to answer.

 

Oh yes the fun anxiety and anticipation of when and if your tinnitus will get worse. My husband has had tinnitus for years. Doesn’t bother him. If he concentrates he can hear it over everything. Last week we took her 18-year-old to an outdoor concert. Tickets I bought over two years ago pre-COVID-19. My husband went with no ear protection unlike the rest of the family. His tinnitus level was not affected. The noise didn’t bother him. All good. Until maybe someday in the future it isn’t all good.

I had a very specific plan for myself. I was going with double ear protection. My custom musician’s earplugs with solid inserts and sealant. And over the head ear defenders. I’ve used this method for two other events - one for a Broadway show and then another show I took my son to. I was fine. I had no problems. Volume very low. Like sitting in my living room.

Well my double ear protection plan did not work out so well at the concert. Upon putting on my over the ear defenders I noticed that the percussion was way too loud and was reverberating through my body. It’s at that point that I realized I was a high risk for bone conduction hearing loss so I took them off. That left me with my ear plugs. I kept taking breaks and walking to the concession stand, to the restroom but it was an outdoor venue so the sound traveled. In the end I was only on the field for maybe 6 or 7 songs.

Anyway, now I’m here dealing with a spike. Now my tinnitus does spike on and off for no reason but now I’m dealing with a spike. I didn’t have any threshold changes, I didn’t have any ear fullness, any sense of hearing loss, I felt fine when I left the concert. But now I’m in a spike. And I’m home hoping and praying it will go back to baseline.

My ENT, who also has tinnitus, said protect your ears and live your life. But actually that’s not always true for everyone. I reviewed my plan with her and by rights everything I was doing was correct.

So my point is that it’s very individual. And here I am trying to work with what feels like two bandsaws going off in each ear.

 

I had a similar experience recently, though not a concert. I went on a pontoon boat. The decibel level was 78-80 dB. I wore foam 32 NRR earplugs. I still got a nasty spike immediately afterwards and my tinnitus has just felt overall worse since.

On paper, 80 dB - 32 dB = 48 dB seems like it would be no issue, but we have to learn our tolerances the hard way.