I Give Up

[dfw]

I've tried and tried and tried. It's been almost 2 years and I felt I had been doing great until 3 weeks ago. Then it's been a downhill spiral ever since. This noise phobia, hyperacusis, or whatever in the hell it is. (One f....ing audiologist, without seeing me said it's probably recruitment, no cure) Always makes my tinnitus worse, headaches, add pulsatile to the mix with a nice new higher pitch. Oh, how peachy.

3 weeks and 4 Alarm's going off. Yea!! What more could I ask for.

1st is the stupid alarm company in my house programming, as soon as I'm right next to it. Boom, then a hotel fire alarm, not once but twice, Yea!!! 3rd, a door alarm beeper, and now add a higher pitched car alarm, when I opened it with the proper key, Yea, again.

My positivity is gone, shattered, there are no more f....s to give. Trying to live life but the minute I don't wear hearing protection ALL the time..........

Enough of this pity party. I'm exhausted

 

[Autumnly]

I know I'm not really a role model when it comes to coping with tinnitus but please don't give up. We might be so close to finally getting a treatment. Two devices from two universities (in phase 2), a new medication for epilepsy (soon to be in phase 2) and a new antidepressant (in phase 3) which might all reduce tinnitus.
Hyperacusis on top of tinnitus is just horrible but in most cases, it eventually gets better and the ears/brain can become desensitized to sounds again. Especially if you've been coping well until recently I'd say try to endure the next weeks to see how your tinnitus and hyperacusis react.

 

[Bill Bauer]

Trying to live life but the minute I don't wear hearing protection ALL the time

Do you carry Peltor muffs with you at all times? If so, were you able to put them on as soon as you heard those fire alarms?

If you have done the above, it is a horrible news for all of us, as that would mean that there really is nothing that we can do to avoid getting hurt by those fire alarms...

 

[dfw]

I know I'm not really a role model when it comes to coping with tinnitus but please don't give up. We might be so close to finally getting a treatment. Two devices from two universities (in phase 2), a new medication for epilepsy (soon to be in phase 2) and a new antidepressant (in phase 3) which might all reduce tinnitus.
Hyperacusis on top of tinnitus is just horrible but in most cases, it eventually gets better and the ears/brain can become desensitized to sounds again. Especially if you've been coping well until recently I'd say try to endure the next weeks to see how your tinnitus and hyperacusis react.

I'm really trying & thank you. I'm just tired & exhausted.

Seems like every few days, I'm at the wrong place at the wrong time. Anything to reverse all of my progress.

 

[robHing]

@dfw We understand your frustration and anger.
The loud noise is our enemy but a lot of times,
they just happened suddenly.

Please be patient with tinnitus.
If it bothers you again, please vent your anger here.

 

[Starthrower]

Seems like every few days, I'm at the wrong place at the wrong time. Anything to reverse all of my progress.

I understand also @dfw. It happens a lot and we cannot really avoid the world. Now it has been years for me and I don't view it as reversing my progress just having to deal with it for a few days or a week. Life goes on and so do I.

Hope you are doing okay. Always feels better to vent.

 

[JasonP]

I know I'm not really a role model when it comes to coping with tinnitus but please don't give up. We might be so close to finally getting a treatment. Two devices from two universities (in phase 2), a new medication for epilepsy (soon to be in phase 2) and a new antidepressant (in phase 3) which might all reduce tinnitus.
Hyperacusis on top of tinnitus is just horrible but in most cases, it eventually gets better and the ears/brain can become desensitized to sounds again. Especially if you've been coping well until recently I'd say try to endure the next weeks to see how your tinnitus and hyperacusis react.

I'm curious, what is the epilepsy medication and anti-depressant called? Also, the two devices? I'm not up to date on this kind of stuff.

 

[dfw]

Thanks all. Took something to take the edge off.

It seems worse than when it first appeared. I just don't know.

I know deep down it can get better, but this time it is more intense, at least it seems that way.

 

[dpdx]

Thanks all. Took something to take the edge off.

It seems worse than when it first appeared. I just don't know.

I know deep down it can get better, but this time it is more intense, at least it seems that way.

That Is how our lives are always living on the edge. I swear I developed extreme anxiety from this. I am only 28 but already have so much grey hair.

 

[Gman]

I'm really trying & thank you. I'm just tired & exhausted.

Seems like every few days, I'm at the wrong place at the wrong time. Anything to reverse all of my progress.

I've had terrible luck with noise incidences in the last year and a half too. But most will just seem worse because your auditory system is on high alert (hyperacusis). It will react and make the T seem worse.

I would suggest finding a better audiologist and look at treatment options for your hyperacusis.
The audiologist I first saw talked about recruitment too, which makes you feel horrible. They also made my conditions worse with sound tolerance tests and tympanogram. I no longer see them.

Consider supplements that can possibly help protect your ears from noise damage (NAC, nicotinamide riboside, alpha lipoic acid, coQ10, vits C, A, E etc, melatonin, magnesium etc).

Don't give up because things can turn around and possibly not be as bad as they seem. I know this from experience, as I'm finding things are improving after a year and half of hell.

 

[dpdx]

I've had terrible luck with noise incidences in the last year and a half too. But most will just seem worse because your auditory system is on high alert (hyperacusis). It will react and make the T seem worse.

I would suggest finding a better audiologist and look at treatment options for your hyperacusis.

Consider supplements that can possibly help protect your ears from noise damage (NAC, nicotinamide riboside, alpha lipoic acid, coQ10, vits C, A, E etc, melatonin, magnesium etc).

Don't give up because things can turn around and possibly not be as bad as they seem. I know this from experience, as I'm finding things are improving after a year and half of hell.

How intrusive is your T? What caused your T?

 

[Gman]

How intrusive is your T? What caused your T?

It was triggered by ear wax solution when I had ear wax build up. In terms of loudness it was very very low for the first 6 months then as a result of unrelated surgery complications I had a kind of nervous breakdown of sorts and it became unhinged. I've experienced it at 10/10 all the way down to a 1/1. I've experienced it going up to 10/10 rapidly during a panic attack.
I've had monotone T, multiple tones across the frequency spectrum, even pulsatile at times, frequencies changing quite often, H, TTTS fluttering and total cramping with conductive hearing loss (temporary) as a result of cramping caused by acoustic shock disorder thanks to noise incidences including by audiologist performing tests, ENT microsuction, MRI, car alarms, thunder, office alarms, I could go on and on. Multiple instances of vertigo.

 

[dpdx]

It was triggered by ear wax solution when I had ear wax build up. In terms of loudness it was very very low for the first 6 months then as a result of surgery complications I had a kind of nervous breakdown of sorts and it became unhinged. I've experienced it at 10/10 all the way down to a 1/1. I've experienced it going up to 10/10 rapidly during a panic attack.
I've had monotone T, multiple tones across the frequency spectrum, even pulsatile at times, frequencies changing quite often, H, TTTS fluttering and total cramping with conductive my hearing loss as a result of cramping caused by acoustic shock disorder thanks to noise incidences including by audiologist performing tests, ENT microsuction, MRI, car alarms, thunder, office alarms, I could go on and on.

I think my T was worsened by caloric test (ear irrigation), VEMP (100-110decibels), Fire Alarm two times, and a plane flying low. But my bet is on the first two. I like you have experienced mild, moderate, severe, and extreme tinnitus.

 

[Gman]

I think my T was worsened by caloric test (ear irrigation), VEMP (100-110decibels), Fire Alarm two times, and a plane flying low. But my bet is on the first two. I like you have experienced mild, moderate, severe, and extreme tinnitus.

Yep, we all need to really be careful even with so called medical professionals. Ask as many questions as possible about risks and decline if it doesn't feel right. I have zero faith in them now. Zero. I feel stupid for being so trusting in the past.
But anyway we are digressing from the OPs post.

 

[dpdx]

Yep, we all need to really be careful even with so called medical professionals. Ask as many questions as possible about risks and decline if it doesn't feel right. I have zero faith in them now. Zero. I feel stupid for being so trusting in the past.
But anyway we are digressing from the OPs post.

I lost my respect for medical community. I think docs are incompetent, especially ENTs. Yeah lets gt back to the topic.

 

[Autumnly]

I'm curious, what is the epilepsy medication and anti-depressant called? Also, the two devices? I'm not up to date on this kind of stuff.

• Device 1: University of Minnesota (in phase 2)
• Device 2: University of Michigan (phase 2 anticipated to start in 2H of 2018)
• Epilepsy: Xenon Pharma - Xen-1101 (improved version of retigabine/trobalt, phase 2 anticipated to start by the end of 2018)
• Depression: Sage Therapeutics - Sage-217 (one additional Phase 3 pivotal trial anticipated in 2H of 2018)

 

[valeri]

• Device 1: University of Minnesota (in phase 2)
• Device 2: University of Michigan (phase 2 anticipated to start in 2H of 2018)
• Epilepsy: Xenon Pharma - Xen-1101 (improved version of retigabine/trobalt, phase 2 anticipated to start by the end of 2018)
• Depression: Sage Therapeutics - Sage-217 (one additional Phase 3 pivotal trial anticipated in 2H of 2018)

All great news, I just wish they would hurry up!

Have any of these been trialed on humans?

 

[Autumnly]

All great news, I just wish they would hurry up!

Have any of these been trialed on humans?

Please check the threads, I linked all of them.

• All of them have tested on humans before which they have to in order to pass phase 1. These trials are the first stage of testing in human subjects.
• However, phase 1 is usually more focused on making sure the drug/device is safe rather than effective.
• Phase 2 and 3 are where it gets interesting when it comes whether a potential treatment might help or not.

Will stop derailing the tread now!

 

[Bobby B]

Just carry earmuffs on hand ready to put on

10 minutes ago I was riding a mall elevator and a bunch of loud small children came in shouting - in 1 second I had my ears covered with those muffs and end of the story!

 

[dfw]

That Is how our lives are always living on the edge. I swear I developed extreme anxiety from this. I am only 28 but already have so much grey hair.

I'm so sorry you're having to deal with this at such an early stage in life. I lived through a challenging time during my 20's as the aids epidemic took hold of an entire community.

But, as with that, I am hopeful things will change and advancements will be made. Already, I have seen more and more people agree with the fact it's more complicated than the "hair cell" analogy of past. Deep down, I firmly believe mind body medicine is the future and is the key to T, in some form or fashion.

Best to you, by the way grey hair is the "new" blonde!

 

[dfw]

I've had terrible luck with noise incidences in the last year and a half too. But most will just seem worse because your auditory system is on high alert (hyperacusis). It will react and make the T seem worse.

I would suggest finding a better audiologist and look at treatment options for your hyperacusis.
The audiologist I first saw talked about recruitment too, which makes you feel horrible. They also made my conditions worse with sound tolerance tests and tympanogram. I no longer see them.

Consider supplements that can possibly help protect your ears from noise damage (NAC, nicotinamide riboside, alpha lipoic acid, coQ10, vits C, A, E etc, melatonin, magnesium etc).

Don't give up because things can turn around and possibly not be as bad as they seem. I know this from experience, as I'm finding things are improving after a year and half of hell.

Looks like you joined this wonderful club about the same time I did. I was actually surprised at how well it went for me after the initial 6 months. Unfortunately, I don't handle « dealing with it » very good, although that's a much better term than setback. (Thank you Starthrower)

Your first paragraph is soooo true.
It is hard to find doctor(s) that know much about this condition. Yes, they can make you feel worse than before you went in.

So I (we) are left to our own to weed out all the crap & find what works best for our individual situations. I have been doing supplements, which seem to make me feel better. I did get a full 8 hours of sleep, with a tad bit of help, so I am in a better place today.

Thanks for everyone reaching out. I try to help other people, but sometimes I get in an overwhelming situation and can't convince myself of what I tell others.

Hugs to everyone & its a new day!!

 

[dpdx]

I'm so sorry you're having to deal with this at such an early stage in life. I lived through a challenging time during my 20's as the aids epidemic took hold of an entire community.

But, as with that, I am hopeful things will change and advancements will be made. Already, I have seen more and more people agree with the fact it's more complicated than the "hair cell" analogy of past. Deep down, I firmly believe mind body medicine is the future and is the key to T, in some form or fashion.

Best to you, by the way grey hair is the "new" blonde!

I honestly don't know how much more I can endure.

 

[dpdx]

I'm so sorry you're having to deal with this at such an early stage in life. I lived through a challenging time during my 20's as the aids epidemic took hold of an entire community.

But, as with that, I am hopeful things will change and advancements will be made. Already, I have seen more and more people agree with the fact it's more complicated than the "hair cell" analogy of past. Deep down, I firmly believe mind body medicine is the future and is the key to T, in some form or fashion.

Best to you, by the way grey hair is the "new" blonde!

I don't know how much more of this I can endure. My T was a blasting 10/10 last night. I hardly slept at all it has become so bad. I was doing so much better in Dec than now in July.

 

[JohnAdams]

I've tried and tried and tried. It's been almost 2 years and I felt I had been doing great until 3 weeks ago. Then it's been a downhill spiral ever since. This noise phobia, hyperacusis, or whatever in the hell it is. (One f....ing audiologist, without seeing me said it's probably recruitment, no cure) Always makes my tinnitus worse, headaches, add pulsatile to the mix with a nice new higher pitch. Oh, how peachy.

3 weeks and 4 Alarm's going off. Yea!! What more could I ask for.

1st is the stupid alarm company in my house programming, as soon as I'm right next to it. Boom, then a hotel fire alarm, not once but twice, Yea!!! 3rd, a door alarm beeper, and now add a higher pitched car alarm, when I opened it with the proper key, Yea, again.

My positivity is gone, shattered, there are no more f....s to give. Trying to live life but the minute I don't wear hearing protection ALL the time..........

Enough of this pity party. I'm exhausted

Just chill. They have successfully restored hearing in rodents. Mammals. That's amazing. That is something that has never been accomplished in the history of the earth. They are now testing their drug in humans. They aren't sharing info because it's a tightly controlled FDA trial. The cure is coming. Please be patient.

 

[Yoshi]

I know how you feel. Avoiding noise is like trying to avoid second-hand smoke in the early 20th century. If it's not an alarm, it's a dental drill. If it's not a dental drill, it's a loud vehicle passing by. If it's not a loud vehicle passing by, it's something heavy dropping next to you. We're encouraged not to wear hearing protection all the time, only to use it when we know we're going to be in a loud situation beforehand, yet it's always noise from the things we least expect that complete undoes all the progress we made. It's just a given that going outside will eventually result in you being caught off guard by a loud noise without any protection on, and that makes doing anything a struggle.

 

[dfw]

I don't know how much more of this I can endure. My T was a blasting 10/10 last night. I hardly slept at all it has become so bad. I was doing so much better in Dec than now in July.

That was my feeling in the 80's. Friends dying weekly, myself, living in fear daily. People were dying in their 20's. For the most part, people didn't care, because of the population that was dying. But....you know what, the sun rose again.

Have you tried hearing aids?
Have you tried meditation DAILY
Have you tried diet changes
Have you tried counseling
Have you tried supplements
Have you tried muscle relaxation
Have you tried massage

I can't rcommend any medicinal, but it helps me through during the tough times, then I follow through with all natural healing methods.

There are so many things that can make our lives better, maybe not perfect, but certainly better. I am t'estiment to that, as I did improve, just a « deal with it » moment now. Remember everyone you pass by today has a challenge, you may not see it, but it's there. Some easier than ours, some harder.

Reach out stay strong, you will prevail as I did in the 80's.

 

[dfw]

I know how you feel. Avoiding noise is like trying to avoid second-hand smoke in the early 20th century. If it's not an alarm, it's a dental drill. If it's not a dental drill, it's a loud vehicle passing by. If it's not a loud vehicle passing by, it's something heavy dropping next to you. We're encouraged not to wear hearing protection all the time, only to use it when we know we're going to be in a loud situation beforehand, yet it's always noise from the things we least expect that complete undoes all the progress we made. It's just a given that going outside will eventually result in you being caught off guard by a loud noise without any protection on, and that makes doing anything a struggle.

Isn't that the truth!!
The person I talk to tells me I can remember every loud noise now, not something I'm proud of, but it's true right now. She says, part of healing will be the point when I can let that go.
Let's see, a bus in Paris at 10 feet with a loud horn, dishes at a restaurant, alarms weekly, pipe s banging etc etc.
I remember them all, which in previous they would not be memorable. That's why I feel phonophobia is a very real possibility, as I'm becoming more afraid of sounds. But I haven't found an audiologist who has the serious ability to differentiate hyperacusis, phonophbia, or any of the other RST.
I have made it a point to wear over ear headphones in noisy restaurants, airplanes and any other environmental areas of concern. They are a life saver to continue living Life at this moment (I have a soft spot for great restaurants) there are a lot of chef owned establishments where I live and travel to.

 

[dfw]

I'm a month in and it starting to seem like this is never going back to baseline. My right ear has started being being noisy, when it wasn't. This spike or (permanent) loudness has me back to horrible feelings. I back to the point of such despair, I just don't know what to do. This is the most horrible I have felt since my onset. I've always tried to be positive to everyone on here, but it's getting really hard to be positive. All I read is spikes can be permanent.

What is most people experience to longest spikes, mine have been limited to a week or so. This time it feels so different.

 

[Autumnly]

The majority of spikes seems to eventually go back to baseline from what I've read. Spikes can last from days to weeks to sometimes even several months.

 

[jimH]

I'm a month in and it starting to seem like this is never going back to baseline. This spike or (permanent) loudness has me back to horrible feelings. I back to the point of such despair, I just don't know what to do. This is the most horrible I have felt since my onset. I've always tried to be positive to everyone on here, but it's getting really hard to be positive. All I read is spikes can be permanent.

What is most people experience to longest spikes, mine have been limited to a week or so. This time it feels so different.

The longest severe/debilitating spike I've experienced was four months. For me, there is a direct correlation between my levels of anxiety, fear and stress to the severity of my T. In addition, I experienced severe H with that spike for the first time.

Only after reducing my anxiety level by the use of an AD did the spike gradually subside and my T return to its previous baseline.

The fear that it was permanent and that I might have it at that level for the rest of my life was the biggest stressor. Almost identical to what you are going through now.

You need to take steps/action to get your anxiety and stress levels down asap. If you haven't already done so, go and talk to your doctor about medication that might be helpful.

Additionally, begin to repeatedly reassure yourself that it's probably just a prolonged spike rather than it being permanent. What we think and believe is very important and effects our emotions during such times.