I'm Having a Day That Is Not So Good...

but it's still not as bad as some days not too long ago so I won't say it's a bad day. My T is louder than normal now--but I'm not distressed. I may use a bit of white noise masking today as I'm at work (on lunch break now) and it still helps as it is SO quiet in this office.

First, I read the thread on the woman who legally killed herself because of her tinnitus--that made me sad for her but I do not judge--like I said in my post, we all take our own paths--so it wasn't that story that turned my day around. It was seeing habituation referred to as: "'Habituation,' a questionable approach to treatment of a serious condition. " in the same thread. I hadn't realized it was questionable...and that is a rude awakening. Then I read that as we get older our T will most likely get worse--something I try not to think about--but now I'm worried as I doubt I could cope if it gets worse. Also in the Dr.'s Corner Dr. Nagler explained about Xanax and I learned that the Xanax I'm taking is most likely just masking my reaction to my t and I'm not really getting any better. From what he wrote I gather that if I stop taking the Xanax I'll start having the negative reaction again--not to mention the other anxieties I was suffering from. I had accepted that habituation might take longer because of the Xanax but I thought it was worth it as it has made my life better in so many ways--and I don't take that much--just .5 3 x's a day. I'm also worried that as it may be softening my T, that I'll never habituate but then habiituation seems like a questionable thing now.

I was really feeling like I took back my life--my CBT Therapist said I should come every other week and my 2nd ENT (the compassionate one) said I was making great progress--my spouse said I'm smiling and laughing more but today...well, maybe this is just a down day. I hope so. Come to think of it--maybe I'm whining a bit....

 

Im also having a down day, mostly due to the stupid story Also, I developed a low humming in my one ear for no apparent reason
I suggesst you visit a doctor for the meds though. very hard to give advise on a board.

 

Kathi we all have those days. I get them a decent amount. This is where what you learned from your cbt and the tips Dr.naglers letter can help you. As far as the xanax goes once you get your t under control it won't bea problem. I don't use it everyday like I did and im doing way better. Tons of people get better on it. Dr.Nagler said the people who don't address the underlying problems, when they get off xanax they may have problems. As far as I know you're addressing your problems and working on them . The part of habbituating being questionable that is one person opinion. That's not a fact, so take it for what it is. The fact is most people will habituate and I have read studies where som treatments offer very high rates of success 80+ percent. You will have days like this but you'll come through these days as well and knowing how to better handle them in the future.

 

Also no one knows if it will get worse, My father has had T since before i was born. I am 24. His never got worse, him and my unlce are habituated, my uncle has bad t that has gotten worse only because he is continually exposed to loud noise for work over 30+ years. He is still fine @Kathi

@Stina sorry to hear youre bummed out. Hope you feel better soon, and Im sure the hum will go soon.

 

I think for some people the tone actually changes and I might be one of them. I just have to live with somehow anyway. I guess im just bummed out due to the whole political instability and crisis as well which makes it worse
Btw it seems that maybe tinnitus is genetic? I know this board has several members who have T in their families.

 

@Stina Yes i thought that as well. I am certainly one of those people. Maybe there is a genetic component to it. Still so much for us to learn about it. Did youre tone change or is it a new tone added to what you already hear?

 

Its a low hum in your ear. Im not sure what its about.
Yes it seems to be genetic to me as well. Well genetherapy is also lightyears away

 

Hi Kathi. I thought absolutely the same about the sentences you mentioned. If I read the success stories, many have habituated or lost their anxiety. They just accepted the noise as music of their brain. So let us together going that route and support each other until we no longer care. It takes much energy every day.

Regarding Xanax ask your doctor. I have Tavor here (lorazepam), but take it only when I am out of control. Luckily I can go through most days without it.

Thanks to everyone here helping each other.

 

Thanks cullen. My CBT does have me look cognitively at my thoughts and write down the distortions--almost the same as Dr. Nagler's letter's writing exercise. Sometimes I am aware that my thinking is changing and my self talk is more productive and helpful. I've been doing relaxation and self hynosis every morning and night....so yes, I am working on my anxiety. I'm not worried about addiction. I had a long talk with my GP about it and he feels that a small therapuetic dose taken under a doctor's supervision is not a problem--even if I took it for a year or two but maybe I'll speak to him about cutting back to 2x's a day, just to see what happens. I can always resume 3 x's if it's necessary.

I think I've just let negativity affect me. Thanks so much for telling me about your father and uncle too. That really makes me feel better. You know, I know 7 people with T and none of them are affected like me. They all have to stop and listen for their T--they eat and drink whatever they want and don't worry like I do! It's maddening!

 

Thanks you Martin. Yes, we all can go down the path together. I am getting to where I don't care a lot of the time--sometimes my T can just buzz along and I'm ok but today, it got to me because I think perhaps it's not a true reaction if the Xanax is masking it.

I did see my doctor--he put me on Xanax back in December when I was very much on the edge and had very dark thoughts because of my T. First he gave me a week's worth of sleeping meds then he gave me the xanax. He started me on .25 mg for a couple of weeks to get used to it then upped it to .50 mg. My ENT also agrees about the xanax--says it will help. .

Thanks for being here.

 

I sure am glad we were able to feel uplifted today in the SUPPORT forum... seriously, this is why I am annoyed about that story. Like I've been asking, what purpose does it serve here? We all know t sucks and what it can make people do. We don't need to go through this crap of being reminded of it. If awareness needs to be made, like someone else said, it's easy enough to just post it on FB or some other social network.

Kathi: habituation is not a myth. Though I think some claims are exaggerated, the fact is people with severe tinnitus have been able to habituate and live normal and happy lives. And there are more good treatments coming out. Researchers are only beginning to scratch gthe surface. One of the more promising ones in my opinion is neuromodulation.

Also my dad has had tinnitus for over 30 years from the military. And he told me he doesn't even think about it.

 

Maybe I ask your opinion about why you think neuromodulation might me successful? I have a hard time understanding medical stuff.

 

Because it seems to make sense to me. Basically it's a sound therapy that essentially tricks the brain into thinking it can still hear the lost frequency. It does this by interupting the tinnitus signals. This supposedly over time will make it so that the brain no longer hears the tinnitus. And while that wouldn't be treating the underlying cause, it would stil be awesome.

Also, on generalfuzz.com/acrn, I've been able to closely match my frequency and from time to time, I do the neuromodulation for a few minutes. It really does seem to temporarily quiet my t. I can see how following the proper protocol may have a much longer effect. I just don't currently have a way to listen to it for 6 hours straight every day.

 

@MattK yes it seems quite uncomfortable. Also, if one has several tones it can be quite hard to find the right tones. I suppose this type of "soundhabituate" might be beneficial anyway. Not very invasive and no side-effects

 

I don't think that this is the rule at all. I think it is much more common that it gets better and stays that way. We must remember that most people use forums like these when their symptom is bad, when it gets better they usually won't stick around. They have better things to do. So it's only natural that we will get more negative reports here. If you look at older posts you will see that there are loads of people who don't post any more, and I like to think it's because they are feeling better and don't feel the need to come here anymore. You seem to be doing quite well, with support around you, so just keep that up and you will be fine.

 

Yeah, my guess with several tones would be to tackle one at a time. Probably with the most annoying one first. But it turns out that neuromodulation doesn't pan out, the point is that it is just one of the promising treatments coming out. There are other sound therapies, drugs and even hair cell regeneration that are being researched.

So there is hope. Inevitably there will continue to be more effective treatments. Until then, we can rest assured that the treatments that are available like TRT have helped many tinnitus sufferers.

Also, keep in mind that every day you get out of bed and function. The more you do this and actually return to the things you enjoy doing, the more your brain will realize tinnitus isn't a danger to you.

 

of course there are various treatments, the most powerful of them is obviously the mind. A pill would be the simpliest one though, as it takes no time.

 

lol... it'd be so nice if there was a pill to quiet down tinnitus for at least several hours... then again, I'd probably start poppin pills like a junky

 

Think about member Meeruf here on the board. According to his Profile, His T started in 2010 and recently he wrote it was gone for three days. Maybe it is completely gone, I don't know. It is in the positivity thread.

 

Hiya Kathi. We all have bad days, trust me. But as you go on you will have less and less. People without T have bad days, so why shouldn't people with T have tough days? Things will get better. Some days are just hard. What I would do is try to lose yourself in something, like a favourite book or funny film. Right now I am watching My Big Fat Greek Wedding. I haven't seen it for a while and I am laughing my head off! Have you seen it?

 

Exactly. People can have T for months and it suddenly disappears, without any warning. This happen for people after years. According to research T goes for at least 25% of people, and to be honest this is low. I know a woman who had T for "months" as she said, and it sounded like a generator. She tuned it out and one night realised it disappeared. She has never mentioned it on the internet etc, so she is not in that statistic. Think of how many people have had T for months and not mentioned it? The woman I know never even went to the doctor, and it went away! Our bodies are amazing at healing ourselves.

 

I almost missed your reply--I already saw a doctor for the meds--he gave them to me. I'm sorry you're having a down day too. Yes--that story reminded me so much of the first month I was dealing with T--it drove me to type that I wanted to end it all because of t in Google and thank god, it led me here because even though I'm having a not so good day--it's way better than it was and mostly I'm happy and doing things that I didn't think I would be doing anymore.

I hope the hum goes away soon--any pain?

 

Hi there! Just want to let you know that almost half of my friends have experienced long term T from months to a couple of years for then to resolve completely. They got it from loud music, accidents at work and for unknown causes. I think this is a fairly common thing to experience at least once in our lifetime. I even read that roughly 30% of the population has experienced T lasting for more than 6 months. Not sure about the number, but after talking to my friends, I wouldnt doubt it.

The funny thing is how we percieve it.. When I was talking to them, I was like - didnt you completely freak out? (as I did) But they were kinda smiling and said nah, it was annoying, but I was hoping it would get better.

One of them has a faint T left though, but it's so faint that he can only hear it if he tries and concentrates very hard about it.

Just wanted to let you know as it might cheer you up a little

Stay strong! We are all here right by your side!

 

Stina, you've probably already seen this video, but it's what got me interested in neuromodulation:

Tinnitus Treatment - Causes and treatment of...

 

No, I've never seen that movie. I'm better now--home and comfy. I know that sleep will make this very loud t quieter. You're right--I have less bad days now than I used to and weekends are always better as I keep busy doing things we like to do. At work it is too quiet --I play a music channel on my computer but it's so low as to be almost useless.

I am watching a tv show called Fringe--I'm on the final season. It's on Netflix.

 

Thank you Mr. Cartman--it does cheer me up to think my t might resolve someday but I'm not counting on it. On some days lately it is very low--just a squeal or sometimes a tinkling sound--so I know I'm better. Today it was very loud but hopefully tomorrow will be better. Just having you all here is great comfort.

 

Thank you MattK--you made me feel a lot better--especially by telling me about your dad who is habituated and doing well.

Thank you for being here--this is a very supportive place.

 

You're welcome. And the thing about my dad is that growing up, I didn't even know he had tinnitus. I guess I had no reason to ask, but he always just seem to function normally. It wasn't until I got my tinnitus 2 months ago that he ended up telling me he has it along with 30% hearing loss from the military. But he told me that when he first got it, it drove him crazy. But he said amazingly enough, he got used to it, and now he never even thinks about it unless he is specifically thinking about it.

But we can all live normal lives. There is no reason why we can't live life to the fullest as if we didn't have t. Eventually you will too.

 

I think the thing with the story is that it is grotesque to read such things whether you are sick or not. Kind of puts you in touch with the other side.
I had a lecture on Tuesday with a media expert and she said that the society nowadays is extremely sensitive towards verbal expression. She said that many times media has helped serious conflicts along by using wrong word and titles or constantly posting online (I think most papers do it nowadays to "stay in the picture".) For example in 2007 a quite serious conflict between nations in Estonia actually started because of false media alerts. Freedom of speech does not mean that anybody should be allowed to say anything - it comes with a responsibility.
Yes the hum is gone. It was 16 degrees out yesterday and it turns out that i still got as little cold Maybe i should wear a winter hat with 25 degrees as well? great climate!