I'm a Mess :(

[Street Spirit]

I was doing well, pushing through my negative thoughts towards T and H when on Monday night I learned some very horrible news which caused me to have anxiety/panic. I also spent an hour on speaker phone talking at a level higher then my ears could handle. I woke up with increased H and T and it's not gone down one bit since. I am back at square one, but this time my T is very loud and intrusive. Prior to Monday it would fluctuate and it I would have a bad day here and there but nothing like this. H bothered more.

Obviously either the noise exposure of the day or phone, or anxiety has caused my T to worsen.

My life just keeps getting worse. I don't know how much more I can handle. I just want to get better and it seems impossible. Having H makes it harder! It seems noise exposures will just continue to worsen my T. I can't sleep. I have different sounds going on in my head, it's awful! But aside from that, my poor family is suffering with other stuff. My daughter is very unwell. How can I overcome this? How can I remain strong? I don't have a choice, I can't give up, but I feel like I have to suffer along, and pretend to be o.k, and I am not o.k. I have to say, as a Christian, I am feeling abandoned and it's not just my T or H it's everything that is happening. This is all torture and what the hell is the point?!

How can there be no cure for this crap?! It makes me sad. I am now scared out of my mind again. 2 mths in, and I right back at square one. Can't eat, can't sleep, can't function. I don't even know what to do anymore.....I see other people with H who's T worsens over the years, or months, I know my fears are not unrealistic....I just want things to get better and any progress I make, get wiped out. It's hard enough having H, let alone ringing, loud T and not only one sound but many!! Please if anyone has habituated to different sounds, please let me know. It seems harder.

I want to be well so I can better take care of my family, my daughter. I know it's about my reaction, but this crap keeps changing!! What do I do? I feel like my ears are just so sensitive to everything!! noise/emotions/food-is this normal? I want to help my daughter (and myself) by starting a Yoga class, is this a mistake? I don't know how to live with this, what are my limitations?

 

[citigirl13]

Hi Lynn. I know exactly what you mean. Two days ago I found out that my uncle has lung cancer and that nothing can be done about it, and yesterday he had to be rushed into hospital. If he were to die tomorrow I will have lost him, my beloved pet dog, and my grandmother in less than a year. And after all of this, to get T, pretty much SUCKS.
It's like, how much can we put up with?

I guess the only thing we can do is remember the good times, remember the people who are still in our lives, and push on. I think Yoga is a great idea - it helps relax you and I had wanted to start it before my T kicked in and distracted me. It is not going to do any harm at any rate.

Stay strong and I hope things get better.

 

[Carlos1]

Hi Lynn hey hang in there this whole T thing has its up and downs there have been times I say to myself I can handle this T thing and go a week thinking I'm Habituated and then something happens and I feel like I'm back to square one and its so demoralizing but you have to keep living your life go to yoga classes do things with your child get your mind off of T and the more you do the more you feel in control. Yes we have set backs but just get back on your feet and start living again and again...you'll be ok just give it time and be kind to yourself.

Carlos

 

[Haru]

Hang in there, I'm a mess, too. We have a story in Turkey: One man fell from a horse. People tried to call him a doctor. He stopped them and said "Also bring me someone who fell from a horse previously!"...My point is, I can get you. T is suffocating sometimes.

Yoga class sounds good! I think meditation is good, too. T messes with my nervous system. Anything good for the nerves is a plus, I think.

 

[TinnitusGirl]

Hi Lynn. Reading your post makes me sad because I remember being in the exact place where you are. But, like the others who have weighed in, I can tell you that you will make it through this. T does have its ups and downs, and you will learn how to navigate them in the best way for you. I've been managing it for over 4 years now and the best thing I ever did was a class called Mindfulness Based Stress Reduction (it was created by a doc to help people with chronic medical conditions). I know an awesome psychologist from UCSF who's now offering it as an online course specifically for people with tinnitus, I'd give you the link but the forum won't let me yet. Her name is Jennifer Gans, just look up Mindfulness Based Tinnitus Stress Reduction.

I was totally doubtful as I'm not naturally a calm or spiritual person, and I was like yeah right, meditation is going to help?! But I swear it totally changed my life. I've recommended MBSR to other friends who don't have medical issues and they have loved it too. Anyway, I wish you the best. If you want you can check out my site/blog where I talk about how I've been able to live my life well in spite of tinnitus. You can find me if you search for Tinnitus Girl.

 

[Jeff M.]

Hey Lynn! My heart breaks for you!! I (and all of us here) know how destructive T can be to us physically, emotionally, and psychologically! For me the first few months were by FAR the worst. Right where you are. Before T I was a super upbeat positive person, never any bouts of anxiety or depression. Yet after a few months of constant T, I was a total wreck!!
BUT.....I got better!! And you WILL too!!! Make sure you are getting SLEEP!! Once I was able to get sleep (initially with the helps of some meds) on a regular basis, I really stabilized emotionally and psychologically. Sleep plus exercise and really just focusing on getting thru each day, and not worrying about the future, really helped (and is helping) me to function with T.
I will be praying for you and really hope you can find some relief and strength to get through!!

 

[dan]

Hi Lynn, I'm sorry that you are going thru this. But the fact is we do have limitations- some more than others, some much less than others. Our bodies and pathologies are all different.
I recall you were talking in bad light on here, of a poster named Joyce from a hyperacusis forum and her appearance on 20/20 national television broadcast.
Well I tell you one thing, her hyperacusis is much worse and her husband is on heavy medications for hyperacusis and ear pain. The bad news is that it can get worse like that for some people.
The good news is that you can prevent it from getting worse and you can actually reverse some of the damage. But in order to do that you have to stop listening to a person who will come here and tell you that hyperacusics do not have to protect themselves any more than a healthy eared individual in our day to day life. This is simply not true and in fact can be dangerous advice.
What you need is professional help with a person who is experienced in dealing with hyperacusics and if that person tells you that you can spend for example 8 hours in an 90db environment, according to the OSHA noise exposure standards, and not cause yourself any damage, is totally dangerous.
If you want some advice from me , I can offer anything I know. Thanks.

p.s. I strongly believe your increase had nothing to do with your anxiety and everything to do with your noise exposure...anxiety might be but a small part of the equation.

All thebest.

 

[billie48]

Hang in there Lynn. We feel your pain. It is a tough struggle for most people when T is new. Two months is a short time for T habituation. In my first two months, I was still in a mess but I am doing absolutely great now. In the initial stage, it was all hell. I usually woke up in the morning with loud screaming ultra high pitch tinnitus shrill, something which used to drive my brain into relentless anxiety and panic attacks on auto mode before I was fully awake enough to reason myself out of these attacks. I had to immediately reach for meds, Ativan, Prozac & what have u whenever my loud T woke me up. No amount of will power could stop this process, so much so that I was worrying my doom would be a foregone conclusion. I mean how do you survive something which didn't give you any chance to fight it. The problem was that I had suffered decades of anxiety and panic disorders. My brain tended to react with anxiety/panic mode on life's challenges. So my brain facing these new and alien T sensation had no chance. It was so freaked out by my T (and hyperacusis soon after) that it just caved into panic on auto mode. Each day was a long dark day. Every night when I went to sleep, if I could sleep at all, not wishing to wake up to repeat the 'torture' cycle again. I mean besides dealing with T & H, I also had to deal with repeated episodes of anxiety and panic attacks. I often thought back then I would never get out of this crap. But never say never. Gradually with time and with switching to more positive approach, listening and practising what kind members advised me, I turned around slowly after a year or so and now at 5 years, I am living a normal and enjoyable life. So don't give up and don't lose hope in God. It is a character building process. Hopefully we can grow out of this crucible of fire of living with T and emerge unscathed. Best wishes.

 

[dan]

Billie what does habituation have to do with anything, Lynn is saying her symptoms were getting worse and she wants to know why and how to stop it.

 

[cullenbohannon]

Billie what does habituation have to do with anything, Lynn is saying her symptoms were getting worse and she wants to know
why and how to stop it.

Well she did say "Please if anyone has habituated to different sounds, please let me know. It seems harder". I would say habituation is relevant

 

[dan]

not to hyperacusis it don't. u cannot habituate to hyperacusis lol

 

[cullenbohannon]

not to hyperacusis it don't. u cannot habituate to hyperacusis lol

With respect I don't think anyone claimed otherwise.

 

[here2help]

Lynn is going to be a success story here.

Lynn, it is possible that the speaker phone temporarily irritated your tinnitus and hyperacusis. This should all turn around for you soon. You are not back to square one and God hasn't abandoned you, even if it feels that way at this moment. There are people in your life, as well as here, who are in your corner.

It is normal to have setbacks and normal to be scared after having one. Still, most people with tinnitus habituate it, no matter how loud it is and no matter the number of sounds. Your chances are very good. Most people with hyperacusis improve their tolerance. Sometimes, this happens naturally with the passage of time. Sometimes, it takes getting into a program and getting some help from a professional.

I admire what Carlos wrote to you. He is spot on. I'm also glad to see mindfulness gaining in popularity and being applied to tinnitus, as TinnitusGirl described.

here2help

 

[dan]

"Still, most people with tinnitus habituate it, no matter how loud it is and no matter the number of sounds."

I respectfully and deeply disagree with this statement. The truth is quite the opposite, and why on earth would anybody take any chances with "no matter how loud tinnitus"/severe hyperacusis, when they can possibly prevent it - is beyond me.
Still Lynn, if you want to leave your future to "chance", who am I to stop you.

 

[Dr. Nagler]

"Still, most people with tinnitus habituate it, no matter how loud it is and no matter the number of sounds."

I respectfully and deeply disagree with this statement ...

Most people do, indeed, habituate their tinnitus, no matter how loud and no matter the number of sounds. Some don't, that's true. But most do.

Stephen Nagler

 

[DebInAustralia]

what are the reasons for failure to habituate? can we predict who will hab and who wont?

 

[dan]

Most people do, indeed, habituate their tinnitus, no matter how loud and no matter the number of sounds. Some don't, that's true. But most do.

Stephen Nagler

Unfortunately you have no data to back up your false claim.
It is more accurate to say that most people do not have super loud tinnitus, hence they will habituate.
Those who have mega tinnitus are waiting for a cure and are pushing scientists to search harder.

 

[Dr. Nagler]

Unfortunately you have no data to back up your false claim.
It is more accurate to say that most people do not have super loud tinnitus, hence they will habituate.
Those who have mega tinnitus are waiting for a cure and are pushing scientists to search harder.

I do have data, dan. Between 1997 and 2002 I ran a tinnitus center in Atlanta. Patients came to that center from across the globe. Many had super loud "mega" tinnitus - or they would not have come from as far away as Africa, Europe, Asia, and Australia. And the vast majority did just fine with habituation-based protocols.

You have stated elsewhere that you are of the opinion that if a person can habituate. he or she could not possibly have super loud tinnitus. That would be your opinion, and you are entitled to it. But please do not come to a support board - any support board - and try to pass it off as fact.

Stephen Nagler

 

[Dr. Nagler]

what are the reasons for failure to habituate? can we predict who will hab and who wont?

Deb, it's not an exact science. Several factors have been identified, however, that tend to lower the chance of success. For instance, individuals with Lyme Disease tend not to do as well. Another factor has to do with the response to noise - if an individual's tinnitus gets markedly louder upon exposure to noise and if that exacerbation lasts more than 24 hours, the chances of success are lower. These factors do not predict failure; they just decrease the chance of success. There are a number of other factors - but none has to do with the overall loudness of one's tinnitus.

Stephen Nagler

 

[dan]

"You have stated elsewhere that you are of the opinion that if a person can habituate. he or she could not possibly have super loud tinnitus. That would be your opinion, and you are entitled to it."

Sorry Dr. Nagler, you must have the wrong guy. I believe in miracles.
But this thread is about Lynn, not a discussion about tinnitus loudness. So if you have any suggestions to Lynn , I'm sure she would appreciate it very much.
And since you ran a tinnitus clinic for 5 years, I'm sure you would have some practical advice for her- to post on here.

And by the way your data is biased and not peer reviewed, nor published, Sorry.

 

[Dr. Nagler]

Sorry Dr. Nagler, you must have the wrong guy. I believe in miracles.

I believe in reality.

Do you know what David Ben Gurion, the first Prime Minister of the State of Israel, said about reality? He said, "You cannot be a realist if you don't believe in miracles."

So, dan, I guess we both believe in miracles.

The difference is, I don't believe in suffering even one more day than absolutely necessary while waiting for a cure that may or may not ever happen. That's where habituation comes in - for me and countless others with "super loud mega tinnitus."

Stephen Nagler

 

[dan]

Dr. Nagler, you have made the whole world aware of your miraculous recovery from mega loud tinnitus, and I am truly happy for you.
Now you see the original poster's post asking for help? Why don't you do less boasting and do more helping - since you don't want her to suffer one more day than she needs to!
What are you waiting for ??? We are all ears.

 

[Dr. Nagler]

Dan, I really liked what @here2help had to say on the subject. Nothing more to add right now.

Stephen Nagler

 

[dan]

Well that really saddens me Dr. Nagler. I would have wished to hear some input from a person who ran a tinnitus clinic, as opposed to a person who has no clinical expertise in the matter.
Please do come back when you have some practical advice.

 

[Dr. Nagler]

Well that really saddens me Dr. Nagler. I would have wished to hear some input from a person who ran a tinnitus clinic, as opposed to a person who has no clinical expertise in the matter.
Please do come back when you have some practical advice.

OK, dan, you forced me into it.

Here are two pieces of practical advice for @Street Spirit .

The first is that support boards like this can be wonderful, but they are no substitute for being evaluated by a knowledgeable and experienced tinnitus clinician who can then recommend a treatment plan based upon that evaluation. If Lynn will contact me off the board and tell me where she lives, perhaps I will know of somebody in her geographical area.

The second is something she should keep in mind while reading through various threads. Suffering from severe intrusive tinnitus as like being in the bottom of a deep dark pit. There are three populations on this board and boards like it:

One population has successfully made it out of the pit and deeply wants all the others here to be able to do the same. If they didn't, they would have no reason to be here at all!!!! These are folks like @here2help.

The second population is on its way out of the pit. They are offering help and in some cases looking for more themselves.

The third population cannot figure its way out and, quite understandably, comes up with all sorts of reasons to justify why they are stuck. Some are quite bitter about it. Also understandably.

The interesting thing is that many of the folks in the first two populations came up with the very same sorts of reasons for why their tinnitus was so unique and so horrific that they could never overcome it ... until they figured out an effective strategy for getting out of the starting gate and beginning to make meaningful progress themselves.
​

Assuming that all posts on the board are sincere and come from the heart (which on any board is a huge assumption), Lynn's job is to figure out whom she wants to actually listen to ... as opposed to whom she might want to commiserate with but otherwise ignore.

Stephen Nagler

​

 

[Street Spirit]

Hi Lynn. I know exactly what you mean. Two days ago I found out that my uncle has lung cancer and that nothing can be done about it, and yesterday he had to be rushed into hospital. If he were to die tomorrow I will have lost him, my beloved pet dog, and my grandmother in less than a year. And after all of this, to get T, pretty much SUCKS.
It's like, how much can we put up with?

I guess the only thing we can do is remember the good times, remember the people who are still in our lives, and push on. I think Yoga is a great idea - it helps relax you and I had wanted to start it before my T kicked in and distracted me. It is not going to do any harm at any rate.

Stay strong and I hope things get better.

So sorry to hear of your uncle, grandmother and beloved pet. I lost a family member this past summer and it was the worst thing I've been through. In fact, it's been pretty tough for me since, with anxiety, depression, TMJD worsening, then T and H. Yes, I believe stress/anxiety/depression played a big role in this.

You stay strong too!

 

[Street Spirit]

Hi Lynn hey hang in there this whole T thing has its up and downs there have been times I say to myself I can handle this T thing and go a week thinking I'm Habituated and then something happens and I feel like I'm back to square one and its so demoralizing but you have to keep living your life go to yoga classes do things with your child get your mind off of T and the more you do the more you feel in control. Yes we have set backs but just get back on your feet and start living again and again...you'll be ok just give it time and be kind to yourself.

Carlos

Thanks Carlos! I agree with you and in fact said the same thing to an Audiologist yesterday. When I go walking and do my usual things, I feel more in control and seem to get better (H wise). Yes setbacks are insanely hard, but realize they are going to occur. Last night my T reduced, and I slept. I feel better today mentally. I am still going to keep moving forward! Thanks again for your response, it was very helpful!

 

[SueR]

@Street Spirit ,

I feel I'm having great success with dealing with my H. While I am not in the same boat as you with still having any young ones at home, I wanted to share some of my thoughts with you, some you already know about.

I have setbacks. If I was on a speaker phone for an hour, I'd be having a bad day. Last night, I wasn't home 15 minutes before I went off to bed, exhausted. I couldn't stand the sound of one more dish clanging.

For me, I feel that my overall trend is "upward" (improvement).... my setbacks have been noisy family members, phone calls, going to a convention, and MRI, and a fire alarm. I anticipate I will have more bad days, but as long as my trend is upward, I'm good.

I hope you get the relief you need.

 

[Street Spirit]

@Street Spirit ,

I feel I'm having great success with dealing with my H. While I am not in the same boat as you with still having any young ones at home, I wanted to share some of my thoughts with you, some you already know about.

I have setbacks. If I was on a speaker phone for an hour, I'd be having a bad day. Last night, I wasn't home 15 minutes before I went off to bed, exhausted. I couldn't stand the sound of one more dish clanging.

For me, I feel that my overall trend is "upward" (improvement).... my setbacks have been noisy family members, phone calls, going to a convention, and MRI, and a fire alarm. I anticipate I will have more bad days, but as long as my trend is upward, I'm good.

I hope you get the relief you need.

So happy for you @SueR!! But I especially love your attitude! I am feeling much better today, and finally saw an Audiologist yesterday. I will continue to move forward, despite setbacks, stress, etc. I won't give up, I have no choice!

 

[SueR]

"I will continue to move forward, despite setbacks, stress, etc. I won't give up, I have no choice!"

[I don't know how to do a partial quote....]

...exactly! We have no choice but to try to get better/cope. I tend to be positive, so this damn well won't be taking me down!