Yet Another Inner Ear Condition Sufferer

[arg_mm]

Hi everyone, I finally decided to stop lurking and participate actively. This forum is extremely helpful, from the support you give each other to the very knowledgeable people and the brave ones that take part on trials and report back. It is simply amazing. We would be quite on our own otherwise. By the way, sorry for my English, I'm from Argentina so I'll try to write as best as I can.

I've had tinnitus since 2008, for unknown reasons. Possibly head or acoustic trauma, but there isn't an exact incident I can blame all this for. It wasn't just the T on my left ear, I also developed H and got real dizzy, my eyes would cross, ears full, etc. I did my round with the ENTs and whatnot, but you already know how all that turns out. All that did was showing me that I had 40-50dB hearing loss at the 2000Hz frequency in both ears.
I started taking Zoloft and Clonazepam to manage my anxiety, Betahistine for the dizzines and a couple of years later all I had was a mild case of T in my left ear that I could only hear at night. I had got my life back. No more H nor dizziness or sensation of fullness on the ears. I gradually stopped taking the meds, finishing Zoloft around mid 2012.

But then, in 2013 everything went seriously wrong. I took a long trip by bus to do some snowboarding. The trip was long and loud, but I always carried my custom made silicon earplugs. I came back home and a week later, hell broke loose on my left ear, all of a sudden while watching TV... sounds going up and down, changing frequencies....My T had established a new baseline. I can now hear it over almost everything, except shower. I'm having H again and get dizzy a lot when trying to run or do some physical activity. After a year and a half, not only have I not habituated, but I've had the T getting worse, developing new tones or increasing volume. H is the same.

I did another round of doctors, MRIs, videonistagmussomething...all to no avail. Everything is fine. Hearing loss in the same levels. I've seen an otoneurologyst last month and he said that what I have is NOT Meniere, which was diagnosed previously by another ENT. So a lot of questions and no answers. I'm now back on Clonazepam and Betahistine, but I'm not sure if they work. I don't really want to go back to Zoloft, though maybe I should, I don't know.

I also have some other weird symptoms that get frowned upon and disregarded by doctors: I can hear the movement of my left eye when reading if it is quiet enough; I hear my voice very loud on my left ear as well. Sometimes it is very bad so I have to remain silent; Pulsatile T when I tilt my head to its side; This will sound crazy, but if I tap on my head on the left side, it sounds different, kind of hollow-ish. I also usually get this crazy, loud fleeting tinnitus that sends me into panic mode for 30 seconds or so...I hate it.
Does any of you experience something similar? I feel something else is wrong, it is not only T that I have to habituate to, there must be something that no doctors have seen. They are not very good around here, and they don't want to spend much time listening to my story and symptoms.

I'm feeling quite desperate about the whole situation. It is making me and my loved ones miserable. It is taking a toll on my relationship with my girlfriend; I'm more isolated each day, losing friendships; I'm having trouble concentrating at work (software development); Not to mention the smalls things we take for granted, like walking on the streets without worrying or protecting the ears, attending weddings, family parties, etc. I just can't stand that I'm not getting any better, quite the opposite. I have stayed indoors a lot, took care of my ears, avoided loud places, all to no avail, because my T is louder...

Well sorry for the long intro, I know most of you have felt the same way... I just needed to put it out there and see if someone relates to my story. Thank you very much.

 

[billie48]

I'm feeling quite desperate about the whole situation. It is making me and my loved ones miserable. It is taking a toll on my relationship with my girlfriend; I'm more isolated each day, losing friendships; I'm having trouble concentrating at work (software development); Not to mention the smalls things we take for granted, like walking on the streets without worrying or protecting the ears, attending weddings, family parties, etc. I just can't stand that I'm not getting any better, quite the opposite. I have stayed indoors a lot, took care of my ears, avoided loud places, all to no avail, because my T is louder...

Welcome from Argentina. Oh, how I love their soccer stars. Messi is the greatest. Sorry to hear you are hurting so much. I am no medical expert on T so I can't explain your new round of T and its tendency. T is unpredictable especially when new or when it changes in level. I can only try to point you to the mental side of the battle. It is every bit as important to manage T in a way that it doesn't eat too much into our life. I have been through hell with my ultra high pitch dog whistle T and severe H. So I know the two conditions are hard to live with together. I also had relentless anxiety and panic attacks triggered by T & H, so much so that I had to depend on meds to survive my darkest time a few years back. I never thought I could recover and have a good life. I suffered a lot because distorted thoughts as well as negative reactions to T tended to paint a bleak future. I made the mistake of projecting my future as a catastrophe based on the worst time of my T suffering. Now I know if I had stayed more positive and learned to manage the mental side of the T battle better, I would have much less sufferings.

Yes T can destroy or sour relationship. I learned about that and I used my own approach to put a stop to that. Our love ones don't necessarily have to suffer. In fact, I used my approach to make my relationship with my love ones the best it has been and it turns out to be a ray of hope and light among the total darkness of T suffering. I talked about my approach in my success story. If you are interested about it, for brevity, I list the link here:

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

T is not an end game. The T-weakened or freaked out mind thinks it is. But in reality many people do live a normal life with loud T. I am now living a productive and absolutely enjoyable life and yet my T blasts away most every morning. T hasn't changed. But I have changed. Perception of T has changed. I am not alone, as TT is loaded with success stories. You can read over them to see if you can get some insights. Here is a video of William Shatner (Star Trek Capt Kirk) and David Letterman in 1996. They both have T, believe it or not. In fact Shatner had it real bad at one point he said he was suicidal. However, with some proper treatment and passage of time plus some change of attitude, he recovers. Not saying his T is gone. But he is back to living a normal life and was able to crack some jokes with Letterman who has 2-tone T himself which he jokes like the Emergency Broadcast system in test 7/24, lol. Shatner later became the spokesperson for ATA. As of today, both of these gentlemen are still sane and living normal, productive life. Likewise, many board members who still have their loud T are living normal lives as they post on their success stories. T ringing sound needs not end the good life. How we react to it can dictate how intrusive T is. You can read Dr. Nagler's Letter to a Tinnitus Sufferer here to see if you can get some wisdom out of that about reaction & intrusive T. Make sure you begin to counter all those distorted negative thoughts as he advises (which I strictly follow and it helps me turn around). Here is are the links:

http://www.ata.org/nagler-letter-to-tinnitus-sufferer

 

[arg_mm]

@billie48 Thank you so much for your kind advice. I've read your success story, I can relate to some of your dark moments. Specially the feelings of hopelessness and projecting a bad future...I will try my best to manage my negativity, it is hard though, I've always been pessimistic and very anxious, even before I started suffering from inner ear disorders.

I'm very glad you could overcome this and take control of your life again. I will try to do the same, I don't want my life to be over at 34. Everything is pretty dull right now, life has no kind of excitement at this point. I wish I can achieve some piece of mind. I've been like these for 2 years, it might be time to change my approach...

On un unrelated note, we all love Messi here! Football/soccer is our main sport, too bad the German national team beat us AGAIN on a world cup final! Will they ever let us win one?

Thank you again Billie, God bless you.

 

[billie48]

Yes, Messi is the greatest soccer player of all time (to me anyway). He can score like magic by himself and he can set up his teammates by those deadly, perfectly placed passes. His penalty kicks are also very precise and dangerous. I just watch him and his team Barcelona beat C. Ronaldo's Real Madrid 2-1 on youtube. Well, at least Real Madrid is not losing big to Messi this time. This one a few years ago is ugly for Real Madrid, losing 0-5 to Messi's team. I still get a kick watching it on youtube:

As for how to get more excited in life to beat depression, I recommend you pursue the things that excite or interest you, such as watching Messi or other soccer games on youtube. Hey, it is free, bro. LOL. When I get bored, I just watch sport programs such as Messi on youtube. Just type in search of Messi and you will get to watch his games. It doesn't have to be real time. His games are a joy to watch, even on archive. His skill is simply so beautiful to watch, like poetry. Man, we are so lucky as soccer fan to watch Messi in our life time. Treasure it. So I encourage you to fill your days with interesting things to do. Try some new hobbies or go outdoor. The more you stimulate the brain with interesting things, the more lively those brain cells become and the better mood you will be in. Just don't focus on T. Let T be. Let the rest of your life be. Life is not meant to be perfect. Count our blessings, such as having the ability to see, hear, talk, move around with able body, take good foods, etc. etc. If we focus on positivity, you can write down a long list of things we can be grateful for. For example, I am grateful for Messi playing in my life time. Enjoy Messi while he is still playing. Tomorrow I am going fishing trying to catch a yummy fish for the family. So many things we can do instead of focussing on T. Take care & God bless.