Two Year Anniversary

[Alue]

Long and not so positive post warning. If you are new to tinnitus you're better off reading the success stories.

It's been two years since my hearing was damaged and I remember it like it was yesterday. When it happened I immediately knew something felt wrong with my hearing. I thought about reporting it and going to urgent care, but decided to wait until the next day. The next day my hearing had mostly returned to normal and I had an audiogram done at the urgent care (who mostly deals with employers). They told me I was fine and sent me on my way. Noises seemed louder to me but it wasn't till a couple days later that I was struck with this loud tinnitus that has been my companion ever sense.

I went from zero tinnitus and loving silence more than anyone I knew to loud intrusive tinnitus overnight. For as long as I can remember, noises bothered me when I was trying to sleep, study, or relax; and silence was my sanctuary. I was devastated, and even felt suicidal, but I told myself I'd give it 6 months at least.

Early on I obsessively researched tinnitus and the possible treatments. After joining this forum, I determined AM101 was my best chance. I was desperate to get into the AM101 trials, because at the time it looked promising and seemed like the best shot I had. In the first six to nine months it was hope that it would go away on it's own or hope for a cure that kept me going, but after the failure of the AM101 trials I gave up on hope for a cure any time soon. I still held on to hope that I would somehow habituate and return to my normal life. Upon conclusion of the AM101 trials I tried Trobalt, and it does give me temporary relief. I take just enough to take the edge off and not enough to completely numb my brain. For me it has very few side effects, and it reduces my tinnitus and improves my mood. I haven't completely tapered off, but I know I will have to soon and that worries me.

The loud T is bad enough, but the H and not knowing if some loud noise is going to give me another new tone is the worst. This condition has left me very isolated because I'm not able to go out and do the things I could before. T and H has made work difficult to say the least. Despite protecting my hearing as much as possible around loud noises, I have developed a new tone from noise exposure at work; it has been several months and it seems that the new tone is here to stay.

I'm starting a new job soon. It sounds like a great fit for the pre-tinnitus me, but I'm very worried about the noise levels at the new job. It's a much more cerebral and demanding job than my current one, and I also wonder about the added stress and brain fog that I seem to have developed. I just don't know what to do anymore.

I don't know why I wrote all that. I just felt the need to vent. I know there are people that have it worse than me, but this hearing condition isn't the first thing that has happened to me that has had a permanent effect on my quality of life. I'm not really living, I'm just surviving.

 

[Bill Bauer]

Thank you for sharing...

loving silence more than anyone I knew...For as long as I can remember, noises bothered me when I was trying to sleep, study, or relax; and silence was my sanctuary.

Same here...

 

[Alue]

Thank you for sharing...

I thought about deleting the thread as it just seems like a complaint, but I guess I'll leave it up.

Same here...

I think those of us who hated noise before tinnitus have a harder time habituating to it.

Still, if it was just the T without the H and reactive/worsening T, I think I would be able to deal with it better by now.

 

[Cheza]

I'm starting a new job soon. It sounds like a great fit for the pre-tinnitus me, but I'm very worried about the noise levels at the new job. It's a much more cerebral and demanding job than my current one, and I also wonder about the added stress and brain fog that I seem to have developed. I just don't know what to do anymore.

My four-year "anniversary" is in April 2018. Fortunately, my T has gotten a lot better through ACRN and intermittent fasting, plus I really think the Back to Silence method has also helped even though I'm honestly not very good at refraining from describing/comparing my T.

I also had a great deal of apprehension as to whether I could engage in cerebral tasks (especially creative ones) with tinnitus rampaging in my head. What I discovered was that it actually helped to have something which demanded mental concentration. I could work for hours at a time on a project and truly never notice the T, until I got up from my desk and broke the focus. I hope the same is true for you in your new job.

As for the noise levels, if you're allowed, get some open-back headphones so you can listen to sound enrichment audio, but still be aware of what's going on. I don't know what kind of noise it is, but maybe you'll eventually tune it out, sort of like we tune out other conversations in a restaurant when we're paying attention to the people we're with.

 

[Bill Bauer]

Have you tried taking supplements like NAC?

 

[Reinier]

I think those of us who hated noise before tinnitus have a harder time habituating to it.

I often wondered if people that were working with sound and well aware of their hearing (people that like listening to Hi-Fi and musicians) can have more problems accepting the new reality.

after the failure of the AM101 trials I gave up on hope for a cure any time soon.

Hope for a cure is something I still cling to. It does help me. But we know it will never be soon enough.
I can relate to many things you wrote in your post.

 

[Alue]

My four-year "anniversary" is in April 2018. Fortunately, my T has gotten a lot better through ACRN and intermittent fasting, plus I really think the Back to Silence method has also helped even though I'm honestly not very good at refraining from describing/comparing my T.

Thanks. The good thing about those is they are all free. Would you say it's gotten a lot better in the past year?

I'm not good at describing my T in terms of how it makes me feel either. I have anhedonia which makes most feelings blunted as it is.

I also had a great deal of apprehension as to whether I could engage in cerebral tasks (especially creative ones) with tinnitus rampaging in my head. What I discovered was that it actually helped to have something which demanded mental concentration. I could work for hours at a time on a project and truly never notice the T, until I got up from my desk and broke the focus. I hope the same is true for you in your new job.

As for the noise levels, if you're allowed, get some open-back headphones so you can listen to sound enrichment audio, but still be aware of what's going on. I don't know what kind of noise it is, but maybe you'll eventually tune it out, sort of like we tune out other conversations in a restaurant when we're paying attention to the people we're with.

The job isn't exactly a desk job. It will require a lot of travel and I don't know the noise levels of all the laboratory equipment I'll be working with or the labs I'll be working in. I don't know what to do if I get flown to a location and it turns out it's too loud for me even with hearing protection. When I developed a new tone a few months ago, I think it was from spending about an hour in a noisy area at work with only earplugs in.

Have you tried taking supplements like NAC?

I've tried all sorts of things. The only thing that works is Trobalt, but that's only a stopgap. I do have NAC. I believe it may be beneficial as a preventative measure, but I doubt it will improve T once it's there. I also have a large kidney stone that has been sitting in my kidney for a couple of years... If it gets much larger it could be too large to pass on it's own. I'm not sure if daily NAC would be a good idea.

 

[Bill Bauer]

I've tried all sorts of things.

What about Magnesium bis glycinate, Vinpocetine, ALCAR (N-Acetyl-L-Carnitine), Ginkgo Gold (Tebonin), and Zinc? I doubt these will promote kidney stones.

Is it the case that you are not a believer in rTMS?

I also have a large kidney stone that has been sitting in my kidney for a couple of years

How did you find out about it?

 

[Alue]

What about Magnesium bis glycinate, Vinpocetine, ALCAR (N-Acetyl-L-Carnitine), Ginkgo Gold (Tebonin), and Zinc? I doubt these will promote kidney stones.

I have chelated magnesium, I take Zink before bet to help with sleep (among other things).
I've tried all sorts of things and supplements, but I don't think any of them will make it better.

Is it the case that you are not a believer in rTMS?

rTMS is a gamble. It can help some, and it can worsen others. I believe it was rTMS that gave @snow86 catastrophic T.

How did you find out about it?

I had a CT scan done some time in 2015.

 

[Bill Bauer]

I had a CT scan done some time in 2015.

Did you decide to get a CT scan done as a result of experiencing kidney pain?

 

[Alue]

Did decide to get a CT scan done as a result of experiencing kidney pain?

Abdominal pain. It really hasn't bothered me in quite a while, though.

By the way, did your new tone ever fade?

 

[Bill Bauer]

By the way, did your new tone ever fade?

It got quieter, but it hasn't disappeared. Sometimes it is louder than the tone in my damaged ear.

 

[Dana]

rTMS is a gamble. It can help some, and it can worsen others. I believe it was rTMS that gave @snow86 catastrophic T.

Yes, it was, and after doing that to him, TRI, "Tinnitus Research Initiatives" stopped answering his e-mails. Everybody should know that!
Everybody!
With their research initiatives they destroyed a life! I do not even know why the rTMS thread is not closed yet. This way snow's sacrifice would have served to something, to prevent other people from the same thing happening to them. At least that!

 

[Bill Bauer]

I do not even know why the rTMS thread is not closed yet.

If someone decides to commit suicide, they might as well try rTMS first (after all, it is supposed to help some of the T sufferers)...

It is certainly a good idea to post his story to that rTMS thread. [I just did that.]

 

[Dana]

If someone decides to commit suicide, they might as well try rTMS first...

Why would they? For the miscroscopic chance, in the best case, to improve a little bit a suicidal level tinnitus, which would help at nothing?

 

[Bill Bauer]

Why would they? For the miscroscopic chance, in the best case, to improve a little bit a suicidal level tinnitus, which would help at nothing?

I admit that I don't know much about rTMS. Once I found out that it can make some people worse off, I decided to look into it only if I ever become suicidal.

I remember reading somewhere that it helps something like 30% of the patients. I assumed that by "helps" they meant that it actually makes a big difference, but I can see how I might have been too optimistic...

 

[DebInAustralia]

Long and not so positive post warning. If you are new to tinnitus you're better off reading the success stories.

It's been two years since my hearing was damaged and I remember it like it was yesterday. When it happened I immediately knew something felt wrong with my hearing. I thought about reporting it and going to urgent care, but decided to wait until the next day. The next day my hearing had mostly returned to normal and I had an audiogram done at the urgent care (who mostly deals with employers). They told me I was fine and sent me on my way. Noises seemed louder to me but it wasn't till a couple days later that I was struck with this loud tinnitus that has been my companion ever sense.

I went from zero tinnitus and loving silence more than anyone I knew to loud intrusive tinnitus overnight. For as long as I can remember, noises bothered me when I was trying to sleep, study, or relax; and silence was my sanctuary. I was devastated, and even felt suicidal, but I told myself I'd give it 6 months at least.

Early on I obsessively researched tinnitus and the possible treatments. After joining this forum, I determined AM101 was my best chance. I was desperate to get into the AM101 trials, because at the time it looked promising and seemed like the best shot I had. In the first six to nine months it was hope that it would go away on it's own or hope for a cure that kept me going, but after the failure of the AM101 trials I gave up on hope for a cure any time soon. I still held on to hope that I would somehow habituate and return to my normal life. Upon conclusion of the AM101 trials I tried Trobalt, and it does give me temporary relief. I take just enough to take the edge off and not enough to completely numb my brain. For me it has very few side effects, and it reduces my tinnitus and improves my mood. I haven't completely tapered off, but I know I will have to soon and that worries me.

The loud T is bad enough, but the H and not knowing if some loud noise is going to give me another new tone is the worst. This condition has left me very isolated because I'm not able to go out and do the things I could before. T and H has made work difficult to say the least. Despite protecting my hearing as much as possible around loud noises, I have developed a new tone from noise exposure at work; it has been several months and it seems that the new tone is here to stay.

I'm starting a new job soon. It sounds like a great fit for the pre-tinnitus me, but I'm very worried about the noise levels at the new job. It's a much more cerebral and demanding job than my current one, and I also wonder about the added stress and brain fog that I seem to have developed. I just don't know what to do anymore.

I don't know why I wrote all that. I just felt the need to vent. I know there are people that have it worse than me, but this hearing condition isn't the first thing that has happened to me that has had a permanent effect on my quality of life. I'm not really living, I'm just surviving.

i know exactly what you mean re your comments about surviving Vs living.

2 years is still not a long time, so far as neuroplasticity, to adapt. youve had the added complication of another tone.

i started of with an awareness of one noise in my right ear, which evolved into a cacophony of different noises in both ears and my head.

it took me a while to adapt. id read stories on here of people habituating after 1 year, and there i was, 3 years in and still struggling at times.

it definately is getting better with time for me, inspite of my changeable t and h. i like to think this can happen for you too Alue.

You might not realise it but you are making progress. i can tell from reading your posts. i can also tell hoe resilient you are.

i havent been able to work that much for bout 7 months due to an illness, but i have a job that demands a lot of mental concentration too. you can do this. if you work in a noisy environment, can you wear ear protection?

i know having tinnitus and hyperacusis can be a life changer, but dont lose hope. many of us learn to adapt. i have. you will too.

 

[Ed209]

My four-year "anniversary" is in April 2018. Fortunately, my T has gotten a lot better through ACRN and intermittent fasting, plus I really think the Back to Silence method has also helped even though I'm honestly not very good at refraining from describing/comparing my T.

I also had a great deal of apprehension as to whether I could engage in cerebral tasks (especially creative ones) with tinnitus rampaging in my head. What I discovered was that it actually helped to have something which demanded mental concentration. I could work for hours at a time on a project and truly never notice the T, until I got up from my desk and broke the focus. I hope the same is true for you in your new job.

As for the noise levels, if you're allowed, get some open-back headphones so you can listen to sound enrichment audio, but still be aware of what's going on. I don't know what kind of noise it is, but maybe you'll eventually tune it out, sort of like we tune out other conversations in a restaurant when we're paying attention to the people we're with.

That's exactly how I feel and is what I have discussed in the past. Getting a hobby that's deeply interesting, absorbing your mind and taking it into a different realm, definitely helps. I once had a post called 'social experiment' that I'll post below. It bullet points everything that worked for me:

https://www.tinnitustalk.com/threads/social-experiment.17658/

 

[GregCA]

I don't know why I wrote all that. I just felt the need to vent. I know there are people that have it worse than me, but this hearing condition isn't the first thing that has happened to me that has had a permanent effect on my quality of life. I'm not really living, I'm just surviving.

I don't have any reassuring words as I know what we're up against, but I am sympathetic.
I hope we will find relief soon. Good that you tried AM101 and Trobalt: you are clearly motivated and action driven.
Did you have anhedonia before T?

Hang in there and good luck!

 

[linearb]

Why would they? For the miscroscopic chance, in the best case, to improve a little bit a suicidal level tinnitus, which would help at nothing?

The number of documented cases where there was some benefit, while not overwhelming, are much greater than cases where there was any worsening, short term or otherwise.

I'm not condoning this, I think it's poorly understood... but unlikely to be very dangerous.

 

[Dana]

The number of documented cases where there was some benefit, while not overwhelming, are much greater than cases where there was any worsening, short term or otherwise.

These statistics don't mean shit. I could guaruantee you that cases like snow do not get "documented". He was put to sign a paper according to which he could not sue if he was not pleased with the results. Being desperate, he signed.

I'm not condoning this, I think it's poorly understood... but unlikely to be very dangerous

So snow is lying. Lying about getting much worse, lying about not getting answers to his e-mails to them.
On the thread there are other members reporting a worsening of the tinnitus after the treatment. Brain2 clinic is not doing it anymore, if Christian is informed correctly.

 

[Alue]

I don't have any reassuring words as I know what we're up against, but I am sympathetic.
I hope we will find relief soon. Good that you tried AM101 and Trobalt: you are clearly motivated and action driven.
Did you have anhedonia before T?

Hang in there and good luck!

Yes, I developed anhedonia before T. It's fairly pronounced. It's not just that I don't get pleasure from once pleasurable activities, I don't get pleasure from medications either. Alcohol does nothing for me. I have oxycodone for my kidney stones, typically opioids give a strong euphoric feeling, but I feel nothing from them now. I know anhedonia can be a "symptom" of depression, but I don't think that's the case for me. It seems like a separate issue.

 

[GregCA]

Yes, I developed anhedonia before T. It's fairly pronounced. It's not just that I don't get pleasure from once pleasurable activities,

What did you use to derive pleasure from before?

I don't get pleasure from medications either.

I never got pleasure from any meds either... perhaps I never got the "right" meds.

Alcohol does nothing for me.

Same here, but I think there could be a correlation vs causation confusion here. Usually we ingest alcohol in a social setting that is prone to "fun" (parties, dinners, etc), so we associate alcohol with pleasure because it helps us loosen a bit and enjoy company a little more. I wasn't aware that alcohol on its own was supposed to provide a pleasurable experience.

I have oxycodone for my kidney stones, typically opioids give a strong euphoric feeling, but I feel nothing from them now.

I've had those for kidney stones too, as well as after surgery, and they never did anything to me either.

I know anhedonia can be a "symptom" of depression, but I don't think that's the case for me. It seems like a separate issue.

Those associations are purely statistical, so it's very possible that it's a separate issue. Do you recall the circumstances when you developed anhedonia? Any trigger?

 

[Bill Bauer]

Alcohol does nothing for me.

Same here. I just feel like I have been poisoned.

 

[Dana]

I don't know why I wrote all that. I just felt the need to vent

I am glad that you did. You know, posts like this are good for us, the people that are not doing that well either.
I could relate so well to some things you said, like

It's a much more cerebral and demanding job than my current one, and I also wonder about the added stress and brain fog that I seem to have developed.

or

I'm not really living, I'm just surviving.

 

[Alue]

What did you use to derive pleasure from before?

You know, the usual things: music, sex, entertainment, outdoor activities, etc.

Same here, but I think there could be a correlation vs causation confusion here. Usually we ingest alcohol in a social setting that is prone to "fun" (parties, dinners, etc), so we associate alcohol with pleasure because it helps us loosen a bit and enjoy company a little more. I wasn't aware that alcohol on its own was supposed to provide a pleasurable experience.

Really? Why do you think people drink it then? It stimulates dopamine receptors in the brain and causes the release of endorphins.

I've had those for kidney stones too, as well as after surgery, and they never did anything to me either.

They used to give me a strong euphoric feeling.

Those associations are purely statistical, so it's very possible that it's a separate issue. Do you recall the circumstances when you developed anhedonia? Any trigger?

Most psychiatrists see anhedonia as a core symptom of depression, whereas most neurologists look at it as a separate symptom. People with Parkinson's and other neurodegenerative disorders can get anhedonia, but I'm sure most psychiatrists would tell them that it's just an adjustment disorder or a symptom of their depression. It's kind of like telling people that hyperacusis is all psychological.

Before getting T, I actually saw a psychologist about my anhedonia. She did an assessment and said that I has pronounced anhedonia, but I did not show many of the signs of depression, and that it could be more neurological.

I don't have any neurological disorder that I'm aware of, but I do wonder if the way my brain is wired makes me more susceptible to developing tinnitus and hyperacusis following an insult to my hearing. I think tinnitus is a maladaptive neurological response to a loss of input (or loss of fidelity).

All that being said, anhedonia isn't even in my top 3 medical complaints. When I mentioned tinnitus wasn't the only thing that has happened to me that has had a negative effect on my quality of life I wasn't even thinking of the loss of ability to experience pleasure.

 

[GregCA]

Really? Why do you think people drink it then? It stimulates dopamine receptors in the brain and causes the release of endorphins.

Yeah, but I didn't think that was enough to derive pleasure from it alone. I thought it would be a catalytic enabler to enjoy other sources of pleasure such as social sources.
I have no reason to disbelieve you thought: maybe the sole ingestion of alcohol is enough to create pleasure with some people indeed.

All that being said, anhedonia isn't even in my top 3 medical complaints. When I mentioned tinnitus wasn't the only thing that has happened to me that has had a negative effect on my quality of life I wasn't even thinking of the loss of ability to experience pleasure.

Sorry about that. It really sucks that difficult conditions can easily be cumulative: it's not like we can think "Well I got crappy T, so I will probably not get cancer" as if there was some kind of balance somewhere that had to be reached.
I hope you'll find some relief sometime soon, for T and/or some of your other ailments.

Take care.

 

[Cheza]

Thanks. The good thing about those is they are all free. Would you say it's gotten a lot better in the past year?

I'm not good at describing my T in terms of how it makes me feel either. I have anhedonia which makes most feelings blunted as it is.

Alue, it's gotten much better! Yesterday it was a bit too intrusive for my comfort level, but the prior 5 or 6 days it barely bothered me at all. Once in a while during the day if I left my work table and got up to do something, it would increase in volume a bit. However, my tinnitus is nowhere near the level as it was in the first couple years, and especially the first six to eight months were horrid.

It has taken a long time to get to this point, though. I started the ACRN and intermittent fasting in March 2016 and April 2016, respectively. I don't think it's habituation, because nothing changed very much before then. After the first 6 to 8 months in 2014, it had remained fairly constant at a 7 to 8 out of 10, and occasionally dropping lower than that. The ACRN gave me the first signs of true improvement.

I understand a little about anhedonia. I think maybe you do have the emotions but they're blunted and not rising to a conscious level. Just from my point of view, the emotions that still come through in your posts are apprehension and frustration. So you could say, "I hear the tinnitus and I feel apprehensive." I always add why I feel what I feel. For example, "I hear my tinnitus and I feel annoyed because I want to enjoy this walk with my dog." Maybe you could say, "I hear my tinnitus and I feel frustrated because I want to concentrate on my work." I think that makes the prefrontal cortex a bit more involved in the process.

The Back to Silence method can take a long time if your limbic system has become too "attached" to your tinnitus, but I found that if I stick with it, it does make a bit of difference.

I hope this helps.

 

[Alue]

Alue, it's gotten much better! Yesterday it was a bit too intrusive for my comfort level, but the prior 5 or 6 days it barely bothered me at all. Once in a while during the day if I left my work table and got up to do something, it would increase in volume a bit. However, my tinnitus is nowhere near the level as it was in the first couple years, and especially the first six to eight months were horrid.

It has taken a long time to get to this point, though. I started the ACRN and intermittent fasting in March 2016 and April 2016, respectively. I don't think it's habituation, because nothing changed very much before then. After the first 6 to 8 months in 2014, it had remained fairly constant at a 7 to 8 out of 10, and occasionally dropping lower than that. The ACRN gave me the first signs of true improvement.

I understand a little about anhedonia. I think maybe you do have the emotions but they're blunted and not rising to a conscious level. Just from my point of view, the emotions that still come through in your posts are apprehension and frustration. So you could say, "I hear the tinnitus and I feel apprehensive." I always add why I feel what I feel. For example, "I hear my tinnitus and I feel annoyed because I want to enjoy this walk with my dog." Maybe you could say, "I hear my tinnitus and I feel frustrated because I want to concentrate on my work." I think that makes the prefrontal cortex a bit more involved in the process.

The Back to Silence method can take a long time if your limbic system has become too "attached" to your tinnitus, but I found that if I stick with it, it does make a bit of difference.

I hope this helps.

That's good to hear you continued to improve after the first few years. Do you keep a pen and paper with the BTS method?

 

[Jake007]

T and H has made work difficult to say the least.

I can really relate to that.

I don't know what to do if I get flown to a location and it turns out it's too loud for me even with hearing protection

Double up man, I do every time at work

I'm not really living, I'm just surviving.

I feel this, I feel like I'm just going through the motions of daily life in a blurr and feeling no emotional response to anything.