Need Some Hope and Encouragement — Tinnitus and Hearing Loss Keep Getting Worse

As my tinnitus and hearing get worse every few months (my audiologists and other doctors don't know why because everything else about me is normal) I find it harder and harder to hold on and have hope. It doesn't help that the relationship between my mother (who provides for me and gets me to where I need to go) is strained due to me not being able to live up to all the hopes and dreams she had for me and my inability to adhere to her "pick yourself up by the bootstraps" way of getting through her own life. It doesn't help that she also has a lot of past trauma that manifests itself through anger issues and lack of ability to have real compassion for anything aside from animals.

I am unable to fall asleep at night until about 4am-7am. To get to sleep I have to take my 15mg of Remeron, turn on my air purifier, play a 10 hour shower track from YouTube on my laptop at 30 volume and set it on my desk facing me while i turn away from it to cut down on the intrusiveness of my higher tinnitus tones, play an 8 hour frogs croaking track from YouTube on my phone which I have to place screen down on the other side of me by my head so that the speaker faces up and I can hear it to mask some of the other tones (if I'm lucky), and I have to be tired enough. I go to work for 4 and three quarter hours 2-3 days a week where I wear earplugs the entire time and am placed in the quietest part of the building and yet everything about work spikes my tinnitus for the rest of the day to levels that no one should have to endure. Why do I still work? Because getting disability benefits is a long battle and I am being charged $465.08 USD every month for my health insurance that helps me to pay for all of my medical things. This costs me all or mere cents under my take home pay every month. Work also gives me the chance to see my coworkers who care about me as much as I care about them.

I go home after work and sit in my room with my air purifier running and I cry off and on for hours until 4am hits and I'm tired enough to lay down. I am also usually highly irritable due to the noise level in my ears and head and I can't bear to have any human company or hear anyone talking because it bothers me so much and makes my tinnitus even louder.

On my days off I can sleep as much as I want (my one relief) and I wake up with much lower tinnitus that ramps up slowly over the day but at a much tolerable pace than a day where I work. I usually sit in bed and browse the internet or play online games all day long. I do some chores if I feel up to it (much to my mother's exasperation) and I try to actively keep my faith in God.

I am tired. I know that my life is turning into one very much like thousands of people who live with disabilities that make life almost impossible to get through and can't leave their homes very often unless they have no choice. I am turning into one of those people but not for lack of trying.

I often ask God "why me" and then I remember all those people I mentioned and I understand that I am not special compared to them. Why not me? I also believe tinnitus came to me to teach me how to be better and stop being selfish and sinful but I am doing a pretty piss poor job at my lessons. I wonder if the cost of having a normal life and being able to share my gift of singing (I have not sang for five years and I miss it) is worth the lessons I'm being forced to learn. But regardless of how I feel about it, from God's perspective, it is worth it. Now if only I can conform my thoughts and feelings in that direction, I wonder if that would make this all more bearable.

Anyway, I need some hope and encouragement from you all if you have any to spare for me. Please no negative or accusatory comments. I'm trying to continue on just as hard as you all are.

 

@derpytia,
Tinnitus has a lot to answer for as it affects everyday living and sleeping and wears you out.

Let's hope some future relief is not to far away.

Emotions play a big part in dealing with tinnitus as low mood just puts more sadness our way.

Better times will come and we must make the most of them to help get through the down times.

Chin up duck and never give up hope.

love glynis

 

Are you getting any treatment for your ETD?

I know how you feel. My loved ones do not fully understand my T. They also do not want to talk about it because they get depressed.

 

I will definitely pray for you. It will get better.

 

I don’t what to say to make you feel better, I wish I did. It breaks my heart to hear this. You are not being punished I need to make that clear.

I’m so sorry you can’t sing anymore, but you know what I’m hopeful you will one day, maybe write a few songs about this hell you are currently in and how you got through this.

I know I’ve said this a few times now in different threads but hopefully there is promising devices/procedures coming up maybe as close as a few months to a few years.

You need to keep finding that strength from somewhere to keep going, I know it’s eating away at your soul slowly, and it sounds like your quality of life is suffering so much but keep that hope alive as we don’t know what’s around the corner. Do you any type of meditation or exercise? Any breathing exercises?

 

It’s hard to read stuff like this because it’s so tragically sad. You don’t deserve any of this and I understand how infuriating it can be when loved ones around you don’t understand how hard it is just to get through the day let alone do any work. It’s also soul destroying when you lose the beauty of music, especially for a performing musician.

Always look ahead, and no matter how bleak your circumstances may feel, always strive to move forward. Replace your losses with new aspirations and don’t look back. However, it is incredibly hard to motivate yourself to do anything when you’re depressed and anxious, so you must try and find a way to lift your spirits. As JCB said, there isn’t much any of us can say to make you feel better (if only we could ) but you must realise that you are in good company here and are loved. We know the struggle is real and what you described sounds incredibly hard to cope with.

I’d love to see a success story of some kind from you one day. Nobody deserves it more.

 

So much of "ourself" is a part of how we were raised as children. It sounds like your mom's issues keep her from showing love towards you. I understand very well.

Self worth...that took me quite a long time to establish even before tinnitus and hyperacusis took the life I knew and worked hard for. It is difficult to see and feel the goodness within you. I see it @derpytia. I always look forward to reading your words in posts or your threads. There is something special about you.

I am not religious but I have this belief in spirit guides. I have always felt it even as a child. Now as an adult after being through a lot of trauma I believe I always end up where I need to be. Sometimes it is for a moment and sometimes for a long period of time.

I always end up finding a person I was intended to meet.

Yes our health insurance here in CA is so expensive and a lot of people I know are working just to afford the monthly costs of insurance. And I do hope you are able to get disability benefits. But maybe a reason for the delay is because you are supposed to be at your job? And you are right you get the chance to have relationships with co-workers.

Are you able to write the words you would sing? Write songs through poetry? I wonder if writing could be the way you could find that voice for song?

Not sure I had any answers - just offering the thoughts that first come to my mind for you.

 

I cant tell you how many sleepless nights i had reading posts here trying to find some glimmer of hope about this situation. I wear musicians ear plugs all day every day except Saturdays and Sunday's to protect my ears from excessive noise. My tinnitus is really loud with multiple tones and hypercussis as well. Please try to calm down and remember everyone here is listening to the same noise inside themselves 24 7. Before i got this i didnt even know the word tinnitus existed so i can relate with people who dont understand what we are going thru. What are you doing to help yourself ? You need to focus on giving your ears a rest and remember this is going to take quite a while for improvements to happen.

 

See an Otologist and see if there is any thing to do perhaps it is an infection, Don't waste time with an audiologist.
Audiologist are hearing aid salesmen not doctors, Otologist are actual doctors that focus on treating a infected inner ear and they'll eventually be the ones doing procedures to reverse hearing loss once the technology becomes available.

Look forward to Frequency Therapeutics success.

 

This is something you need to stop doing. I hear this a lot so it’s quite common on this forum, but wearing earplugs 24/7 is not going to help you; it will do the opposite.

 

Hi derpytia, I have been reading your posts for a while now.

I know you're suffering, I really feel for you, I'm dealing with a lot of pain as well, so I understand, everyone here gets it.

The only things I can control now, is what I eat and trying to get in some exercise.

Try everything my friend, diet, hot baths, anything and everything.

Don't give up. Please, please, please... it's actually so important for you and for those who care about you, including people on this forum... all of us, me and you, are in our darkest moments of despair and fragility, can not give up. You need to hold on dear, treatments are coming, and maybe you might find a specialist who could help. I wish I could reach through the computer and hug you, massage your shoulders, and take the stress and blues away. I'm really being sincere and honest, I can't find the words, so just know you're loved, your so important, amazing and cool. Sincerely Daniel,

 

Tia have you been tested for LVAS? Or autoimmune inner ear disease? Or even SCDS? I know the auto-immune one can just randomly come on and cause huge fluctuations in hearing, I also wonder if it is like you hear a loud noise and then this triggers your immune system to attack your ear? It could even maybe be like a perilymphatic fistula that isn't causing dizziness, if that is even possible, however, it would explain the reactivity and loss in hearing. I have something similar where my ears to get permanent increases from sound but mine seems to be unrelated to hearing as my audiogram hasn't changed. I hope you find something that helps, reading your stuff brings tears to my eyes because you seem like a genuinely good person.

 

I look forward to the day I meet my maker, whoever that may be so I can throttle them.

Tinnitus is such a cruel beast and I am so sorry that you suffer like this. I believe that life teaches us something and one day you'll look back on this period and say 'Now I see why that happened'.

When I first got tinnitus in 1997 I thought my life was over, but a series of things that happened afterwards would not have happened had I not got tinnitus. I wouldn't have met my wife, bought a house at the right time, had kids, got off shift work etc.

I've had a bad time myself lately but I hope I too will look back and say the same again. I never looked up anything about tinnitus since 1997 and since October I have and now I learn there's a device that may help us on its way. Maybe in 15 months time I'll be free of tinnitus or at least in a better place and I'll look back and say 'If I didn't have that spike, I would never have known'.

The Universe never lets us down in the end.

 

I concur. I am an "all of the above" Tinnitus junkie. I will try anything that sounds promising, or where others have had good results. Just "doing something" even if it doesn't pan out gets me on that road to positivity which is so important for moving forward with positives, instead of a road paved with negatives. Don't get me wrong, T is one giant negative, but my feeling is that if I can start accumulating positives (healthier lifestyle, better food, counting my blessings, discovering that I have some people in my life who really care, trying to help others with this crap, etc...) then hopefully the accumulation of those positives will reach a point where they begin to catch up to, and eventually overwhelm the mighty T. This path is my choice, for I have no other.

 

@JohnFox

Good words my friend, I'm gonna listen to you.

Sometimes I say inspiring , and profound words, and the next minute I'm in handcuffs for beating up a guy who hit his wife.

I've got serious PTSD and brain damage, do yourself a favor, take the good things I say and the rest flush down the toilet, I'm a loose cannon, just trying to support my kids, stay a free man, and avoid the looney bin.

Thanks again for your kind words, I'm gonna listen to you.

Wish you well friend.

 

Allan I’m so jaded by this awful crap but i’m really glad you’re having a moment of positivity.

I too have glimpses of being free of this cruel nightmare and managing to get my life back on track, and it’s these moments that help me slave on.

God I seriously hope you’re right and help is on its way.

How on earth has a cure for this been so overlooked for so long? I watched a doc yesterday about a guy who infected a load of other guys with HIV. None of them was even remotely tortured like us lot. All of them led healthy, happy lives taking just one pill a day...... If only that were the reality of living with tinnitus instead of constantly battling suicidal thoughts and daily torment.

 

MY positivity has slipped today. I'm switching anti depressants, my noise is loud and I feel like having a breakdown.

 

As usual, very insightful BAM. It is incredible that with the exception of hearing aids there have been no virtually no developments in treatment within the last 40 years that an ENT doctor can recommend. Even such intractable conditions as ALS, autism and schizophrenia have had revolutionary studies and approaches developed within this time. In fact, I do not know of any other medical condition that is so pervasive and so woefully neglected.

 

It’s horrifying that so many of us are literally left to suffer years of excruciating noise torture and the attitude of the world is to simply shrug......it can’t be that bad.

And sadly by struggling on with incredible strength we are actually propagating the myth of if being a condition you ‘get used to’.

The insane cruelty is beyond all comprehension.

 

I am replying to you but to Bam as well.

I am wondering if it is a combination of money and promotion of addressing it - in this case, a lack thereof? The reason it's neglected or overlooked is the same as usual: t sufferers look normal. Other people can't hear your t either (usually) and can't relate to you. There are no 'severe tinnitus' special interest groups or organizations to speak or become vocal on our behalf.

I think someone has to get the issue in the media, especially on TV. But, repeatedly.

Finally, when you compare to the research, financing and treatment on the other conditions you mention above, most of those have a visual component, you can see something. Again, it's about the visual experience and organizations that use that to influence research support?

Even those in the field, audiologists and ENTs say little about those who have severe cases of t. Researchers and experts who acknowledge this need to make the public more aware that it exists and that includes those in the ear/brain professions.

 

Really the only way to promote how bad this is in the way that Gaby Olthuis did. She didn’t kill her self, she managed to convince doctors to kill her....based on tinnitus. And then she made a documentary where she eloquently explained why. That’s a major thing and although very sad and tragic should have been a huge shift in the way this condition is treated. But one person isn’t enough. There are still too many people (understandably) who broken, unheard and despairing just revert to suicide. As I probably will soon (depending on Neuromod doing anything) because I have no option or support for euthanasia from my family - they don’t see how bad this is.

The real problem is that the powers that be do not want to acknowledge this as a life ending condition. (Even our own families and friends don’t!) They do not want to spend money on it. They want us to suffer in silence or just fuck off and kill ourselves so they can blame depression and move on to curing cancer.

 

I will be praying for you... and all the people on here

 

I have been in your shoes before and still am to some degree. No matter how hard it is, we still have to try to move forward. Life is not easy at all, taking it day by day and just giving life a try, is a great step in the right direction. We may not always get things right, but as long as we try then things can eventually fall into place. Tinnitus is tough, but we are tougher! Tinnitus may want us to become the underdog in life, but I am always rooting for the underdog and I know all of us have the hearts of champions!!!!

 

I don't.

 

Thank you for having the courage and the integrity to tell the truth of this hateful condition my lovely friend.

The tragedy of Gaby Olthuis was not her death, but the horrible way in which this vile illness forced her to live her life.

You are never out of my mind Bam,
love
Dave x
Jazzer

 

@derpytia I am very sorry to hear you are having a rough go of things. I don't think I could say anything as eloquently as been said. What I do know is that people are out there working on a solution for these conditions as we try to come to terms to live with them in the meantime. While I can't offer much more than has already been said, perhaps it would bring you some good feelings to help in the research process. A bunch of us are currently voting for Susan Shore's research to receive a write-up in a research magazine. Perhaps during some of the time that you are playing video games you could also vote to assist in this process and that may provide some positive feelings. I know I am looking to volunteer more and it can have good feeling properties, so it may help you some? If you're interested below is the thread. I truly wish you well and pray for all of us.

https://www.tinnitustalk.com/thread...itus-research-—-winner-gets-a-write-up.34021/

 

Great quote!! I'm going to make this my new mantra. Past few days have been lousy with T. in the mornings far worse than before. But I can do it!