Relapse

[tomytl]

Hi,
I have joined this forum about 3 weeks ago, it's far the best forum! I am 39 and from Europe.

In 2003 I got sudden hearing loss with a extrem hyperacusis in thr left ear and some established hearing loss in both. At this tine I really thought it's over! It was far one of my darkest time of life.
I can't say how many days I was sitting in front of the PC and listened hours & hours to music, white noises and and.... (at very low level)
I was depressed a lot, couldn't accept the situation for long time. Until I made a travel arround the world. I guess it was the key to arrange me with new and unknown situations. A few monthes later I could live with the "damaged" hearing and I was fully back in life.

In 2007, big relapse number 2. Again, sudden hearung loss, this time right ear...and Tinnitus....very painful tone in the high 8-10 khz. I felt back in big depression, again, I thought now it's over for sure....
Again, listen a lot to music and noises at low levels, going everywhere also massage, acupressure, hot bathes.... I went again travelling... it took almost 2 years until I was back in life again..still with hearing loss and some fluctuating pressure in the left ear.... But I was back and could do what ever I wanted.....until now..............

I got a relapse of tinnitus & hyperacusis about 3 weeks ago.
Reason for that could be stress and some loudness in which I was, in a full restaurant. Next day when I woke up, very high pitched noise histling tinnitus, hyperacusis and the feeling of some more hearing loss in the deep frequencies. Full pressured ears is also an issue.
I got some panic, took some,medications directly from my rescue box went to ENT, nothing really hepled.
After 3 weeks I can slightly feel a decrease of the ear pressure, but it's still here and it feels like a kind of missing dynamics.
Could it be, that my hearing nerves are generally out of their connections?
I mean, in the audiogram I haven't any noticable new notches...
Anyway, I will give all ti reach the point that I can arrange again.... I saw twice, it's possible, it really needs some more time.

Greets tomytl

 

[LeQuack]

I know the feeling, like a bad dream except you don't wake up and it keeps going.

 

[NeoM]

Wow, sudden hearing loss twice? I'm sorry.

What's your hearing like now? Both low and high losses? Moderate? Moderately severe?

I like your postings in the hair cell regeneration thread, keep them coming.

 

[tomytl]

Wow, sudden hearing loss twice? I'm sorry.

What's your hearing like now? Both low and high losses? Moderate? Moderately severe?

I like your postings in the hair cell regeneration thread, keep them coming.

Hi guys,

thanks for hugging me

I have some,mixed hearing loss, some in the lows
0-2khz slight , 3-6khz seem to be ok, 7-8khz moderat, 9-12 khz slight.

Tinitus always highpitched, secound tone is changing frequency and is more low.
Today humming in the subbasses.....yesterday about 600Hz, another day 1khz.

Yes I will keep posting about HCR, it's something I'm collecting info for almost 10 years. I hope I didn't have to another 11 years ;-)
I'm aware, it's a big vision what all the researcher do, but as Stefan Heller once said: Maybe it's just an eardrop, we don't know yet.

 

[Stina]

Do you know what trigerred it in the first place? Does the hearing loss annoy you in everyday situations? Im hoping there shall be a drug to improve hearing quicker than the hair cell regeneration.

 

[tomytl]

Do you know what trigerred it in the first place? Does the hearing loss annoy you in everyday situations? Im hoping there shall be a drug to improve hearing quicker than the hair cell regeneration.

Hi Stina,
no I don't exactly know why. The first big crash was probably stress, burnout, dehydration or even a blood problem.
Beforde the sudden hearing loss I was sweating a lot during sleep, and once I also collapsed when I stand up in the morning.
After sudden hearing loss, a few weeks later I was in the hospital because of a lung embolie.
At first, I hadn't T. Hearing Loss and strong Hyperacusis.... As I wrote, I learned to live with it within 3 years.
But since then, I think I have very sensitive hearing, so I am always carefully...
After 2. impact 5 years later, I developed less Hyperacusis, but a highpitched Tinnitus. I had again 2 years to accept that.
Now, after 6-7 of a life with coping with Hearing Loss and Tinitus, the new crash with more Tinitus and some Hyperacusis and pressure in the ear....
So I am coping very bad with all parameters and it really concentrates me on my hearing loss.
The strange thing, even I was at least 2-3 times in a similar condition, it have the same hopless feeling about
getting better over time...

And yes, I hope I will relief bevor HCR will be available... But doing research about all the scientific stuff gives me
some hope, even when it's far...

How are you at the moment with your hearing problems? What is your trick to stay positive?

Greets tomytl

 

[Stina]

Ive readthat stress is a big trigger, but it is very hard to control that. I cant even imagine how difficult that must be to get random hearing problems. I find it quite hard to relate to, because I have know hearing problems per se. Ive been of course tested only up to 8000 hz (in Estonia its not possible to test higher levels) but on these levels my hearing is good or very good. Recently Ive actually noticed that many people my age don't hear as well as I do. So I only have mild tinnitus (mostly audible in the silence) and no hyperacusis. I got my tinnitus from listening to loud music via MP3 for years and probably also because 2013 was a stressful year. In my case the main problem was that I was so afraid of the future. I am prone to catastrophic thinking, eg. I think of the worst possible variant and believe its going to happen to me. Now Im trying to teach myself to live day by day and not think about the future too much. Sure I make plans, but I also realize that they may not happen and I try to accept that. I also try to worry less. I recently changed my job so now I have to combine school + work so I hardly have time to think about my tinnitus. I now mainly hear it before bed, also at home but when I study I dont really notice it.
I also visited a psychiatrist and he prescribed Coaxil which seems to be helping a lot (and no side-effects in my case!). I am also considering therapy to change my attitude towards life and to modify my overly hysterical personality. I try not to think about it as a fight with tinnitus, but rather as a possibility to find out more about myself.
And of course I avoid loud noises which is really easy. My daily route now means work-school-work-home so no time for bars/clubs.

 

[tomytl]

Yes, stress is indeed a bad factor at all.... I also took some some tranquelizers for sleeping.
Not thinking about it's impossible at the moment, more because of the sensitive hearing and the
pressure and the notice about the hearing loss. All is focused between the 2 ears...
Maybe I have to try out also an antidep. medication...
It's all about defocus... I know.. but I am sad and angry and really demotivated to take again
this tour (torture), but I'm afraid, I have no other solution.

I haven't been in really noise places for years, I always put some cotton balls in the ear when I am
outside where many people are, just in case... Maybe this made my problem with noise sensitive
much bigger... I got very sensitve ears... damn....

Maybe I must join a TRT or something else...

 

[Stina]

Yes, stress is indeed a bad factor at all.... I also took some some tranquelizers for sleeping.
Not thinking about it's impossible at the moment, more because of the sensitive hearing and the
pressure and the notice about the hearing loss. All is focused between the 2 ears...
Maybe I have to try out also an antidep. medication...
It's all about defocus... I know.. but I am sad and angry and really demotivated to take again
this tour (torture), but I'm afraid, I have no other solution.

I haven't been in really noise places for years, I always put some cotton balls in the ear when I am
outside where many people are, just in case... Maybe this made my problem with noise sensitive
much bigger... I got very sensitve ears... damn....

Maybe I must join a TRT or something else...

I suppose you should find a very good audiologist and psychiatrist and speak to them about this things Professional help is important.

 

[NeoM]

Do you know what trigerred it in the first place? Does the hearing loss annoy you in everyday situations? Im hoping there shall be a drug to improve hearing quicker than the hair cell regeneration.

My hearing loss is actually probably worse than his. I can tell you before tinnitus I didn't have any complaints about hearing, but I know after I got tinnitus things are harder to hear. For instance I used to listen to the TV at volume 7 now I need it at 9 or 10. So I figured, it's either 1) the tinnitus making hearing the TV harder or 2) my tinnitus was actually caused by a mini-hearing loss.

Yeah, so now I don't know whether if the tinnitus went away I would go back to how it was before or whether I need hearing aids.

However, I'll say that talking to people is fine.

 

[Stina]

My hearing loss is actually probably worse than his. I can tell you before tinnitus I didn't have any complaints about hearing, but I know after I got tinnitus things are harder to hear. For instance I used to listen to the TV at volume 7 now I need it at 9 or 10. So I figured, it's either 1) the tinnitus making hearing the TV harder or 2) my tinnitus was actually caused by a mini-hearing loss.

Yeah, so now I don't know whether if the tinnitus went away I would go back to how it was before or whether I need hearing aids.

However, I'll say that talking to people is fine.

Probably its a combination of things... Have you had a hearing test done or not? I think up to 8000 hz measures the sounds we actually use (the highest are bird sing, doorbells and stuff like that)

 

[NeoM]

Probably its a combination of things... Have you had a hearing test done or not? I think up to 8000 hz measures the sounds we actually use (the highest are bird sing, doorbells and stuff like that)

Yeah, mild and moderate loss at higher frequencies with my left ear being the better one (for instance the left 2k is normal and the right is up to 40 db loss).

 

[tomytl]

Yeah, mild and moderate loss at higher frequencies with my left ear being the better one (for instance the left 2k is normal and the right is up to 40 db loss).

NeoM, do you wear hearing aids? I am really thinking about if the noise does not stop soon.
Ok, I mean, my Tinnitus-Attack is a kind of fresh 3 weeks, so I have to wait a little more and hope for decreasing
Hyperacusis...
I see forward to get some information from S. Hellers presentation today in Sacramento. I wrote to this institution if they could pass me some infos. And on Monday there will be the Genvec presentation, there we should get a webcast...
At the moment, I live again in the future with my thoughts, its like escaping....

 

[NeoM]

No, I don't wear hearing aids. I cannot afford to do TRT or even get hearing aids. However, I cannot help but think my hearing would improve probably 5% percent if the tinnitus was gone. I've heard some people say that hearing aids help their tinnitus seem less intrusive, but I cannot state it as an absolute fact.

But yeah, I know what you mean about living in the future. Come on Genvec...

 

[tomytl]

No, I don't wear hearing aids. I cannot afford to do TRT or even get hearing aids. However, I cannot help but think my hearing would improve probably 5% percent if the tinnitus was gone. I've heard some people say that hearing aids help their tinnitus seem less intrusive, but I cannot state it as an absolute fact.

But yeah, I know what you mean about living in the future. Come on Genvec...

I am sorry about your situation not affording to joing TRT or buy hearing aids.
Yes, all these therapies and hearing utils are so expensive, even if we have a good insurance system here,
everything costs so much... and I tried so many stuff...

By the way, I got answer from an event manager from the Sacramento Hearingloss Assosication.
She will search and send some material if available.

 

[Stina]

No, I don't wear hearing aids. I cannot afford to do TRT or even get hearing aids. However, I cannot help but think my hearing would improve probably 5% percent if the tinnitus was gone. I've heard some people say that hearing aids help their tinnitus seem less intrusive, but I cannot state it as an absolute fact.

But yeah, I know what you mean about living in the future. Come on Genvec...

How about ordinary therapy? Some therapists have experience with tinnitus patients and therefor know how to help. Sure its not TRT but it might help anyway. Would the insurance cover that?

 

[tomytl]

Hi,
I am very desperated this night, can't sleep, can't laugh, can't have positive thinking!!!!
Just depressed and desperated, feeling in a hopeless situation....
I have Tinnitus, Hyperacusis and slight to mild hearing loss.....
What are you doing in such situation?????

I am trying to relax in the bath, at 3 am.....

Greets Tom

 

[Karen]

Hi, Tom,

I'm so sorry you're having a tinnitus relapse. What works for me at times like that is taking a shower, taking a sleep aid or herbal tea, even trying to read (if that's possible) to help you get sleepy. Also, do you have some form of white noise that you can play in the background? Noise to drown out your tinnitus can really help. Have you heard about pillow speakers? You can order those online, and then you can play music or any sounds you'd like to help you relax.

Do you have any sort of medicine or supplement that helps you relax, such as melatonin? Also, I've found that taking magnesium helps with relaxation, and it may calm down the tinnitus a little bit, as well. I am also taking B vitamins, plus extra niacin. For some people, those vitamins help calm down tinnitus.

I hope you're able to get some sleep tonight. I know exactly what you're going through right now, and it can be difficult. Please try to relax and don't let the tinnitus take over!

Best wishes for a good night's sleep,
Karen

 

[tomytl]

Hi Karen,

thank you very much for your hints, I really really appriciate.. I am now in the bath with my laptop hearing
some pink noise over headphones... I am still very not tiered...unfortunately...
Yes, I got some medications, but I have very much respect to take them. It's Zolpidem, I took a half pill
yesterday, after it didn't work within 1 hour, I took the second and I got some sleep from 6 am to 4 pm....
Tinnitus was very bad today, I would not say it's more bad than before, but my nerves seems to be
very stressed... I really don't know how to handle the situation, even this whole stuff is not new to me..
But very strange, it's like it's new to me, also after the third big relapse... it's like
to start in a hopeless future, even I could manage it the last 2 times...
So now it's 4:23 am, and I am very awake...

I also take Magnesium, B12, NAC and and and... but at the moment I am just very deperated...
Maybe it's because I am back from 3 weeks of vacations, back to reality...

Something strange I also experienced, when all started again, I got the perception of
an oxygen inhalation mask (gum) again, like I experienced in my HBO-Therapy 10 years
ago... it's very weird... but it's here all the time...

Ok, I will try to get out of the bath and drink some tee... Hope I can sleep without sleeping pills.

How is your state of Tinnitus? When does it start to get better?

Thanks and alle the best to you
Tom

 

[Karen]

Hi, again, Tom,

I'm glad you have the pink noise, and hope you're able to get to sleep without taking any medicine. I am like you in that I don't like to take Zolpidem, either. I'd rather take something natural than to take a prescription drug that may have long-term side effects. What I do is take two magnesium chloride tablets (I order them online) and 4 tea pills of a Chinese herbal called An Shen Bu Xin Wan that someone recommended to me. I take them about 1 hour before bedtime, and they help me relax naturally.

I've had tinnitus for many years. The first time, it was noise-induced and I habituated to it pretty quickly. The second time has been much harder for me; four years ago, my tinnitus got worse after I took a blood pressure drug. So, I am not anxious to take any more drugs, if at all possible! Mine has gradually improved over these 4 years, and I am living with it. I have both hissing tinnitus and pulsatile (sound of heartbeat) tinnitus in my right ear only. It was very severe when it first started, but it has calmed down quite a bit since then. It varies with the individual, but hopefully yours will begin to calm down in the next several months. I don't have hyperacusis, but the people who do say it gets better with time.

I wish you well, and hope you have a good night's rest!

Best wishes,
Karen