Hi Everyone

It is nice to find a Tinnitus forum where everyone seems really nice and supportive. After all, we all suffer from the same beast! I have had T since 2008 and it has continued to worsen. Although I feel I have habituated more than once, my T continues to be a daily struggle....

Meghan

 

Hi @Meghan,

Welcome to Tinnitus Talk! It's a pleasure to meet you.

I just joined back in November when my Tinnitus started, and I've been fortunate to have the support of this community and its many knowledgeable, caring, and empathetic members during the start of my condition when the body and brain were in fight-or-flight mode and anxiety was robbing me of sleep and sanity. It's really fascinating the two types of people who join to start - those who have just begun their onset and are desperately searching for help, and those who have had their condition for a while and want to connect with others. In all cases, I find everyone here to be incredibly warm and loving, and I am truly fortunate to have found this place.

Can you share a little bit more about how your Tinnitus onset started? What does it sound like? Is it in both ears? You mention that hearing loss and possible noise exposure are likely causes -- what leads you to that conclusion? Were you diagnosed? How have you habituated over the past few years?

By and large, I find that so little is known about Tinnitus -- and in fact, I am shocked and horrified that most in the medical community only have a very vague and powerless notion of what Tinnitus is, much less how to even evaluate its causes -- that the Tinnitus Community tends to have expertise on this condition far above and beyond that of most medical professionals. There are some practitioners here in our forum, like @Dr. Nagler, who are both -- sufferer and care-giver -- and their balanced, cautious, and honest views are the true beacons of reality here that keep us all grounded as we seek for relief, treatments, and the ever-elusive-cure.

I'm looking forward to getting to know you and wish you a warm welcome here to TT.

-- Kaelon / Juan

 

My experience is 'T' is going to do what it wants. I've had several relapses and have habituated to all of them. I am currently in my 8th month of a relapse. I am having some good days. Which is good. It usually take 12-18 months to calm down.

 

Hi Kaelon,

My T is like a very loud hissing roaring sound in my head 24/7. I have had various other sounds like clicking in one ear and swooshing as well as pulsating but they are not constant. I just woke up with it one morning after a period of great stress. I was diagnosed with Otosclerosis and hearing loss and I had frequented bars and clubs. I believe that it started as mild hissing in my left ear before I knew what tinnitus was and I had fluid and fullness in my ears. Your right about that, docs are completely useless when it comes to Tinnitus and you will find that us suffers are the experts. I recently suffered a severe spike after noise exposure at a busy mall ( I did not wear ear protection) and my T has not recovered. I went back on the meds for about six mths and suffered a even worse spike coming off about 3 mths ago along with some personal stresses. Life has been really rough since. How about your self? What is your story? Have you tried any treatment that has helped?

Meghan

 

Hi Meghan,

I'm truly sorry to hear about your severe spike, and even more sorry to learn that it has continued to endure for more than 3 months. I have read that most spikes that are acoustically-charged tend to dissipate within 3-6 months, so hopefully, you are approaching or passing your zenith so that your brain has an opportunity to adjust.

My story is not unusual to people here: after a month of very high stress and suffering from epigastric pain at night, coupled with heart palpitations, (which I later learned was being caused by a mild case of reactive gastropathy with very mild dyspepsia) I awoke on the morning of November 2, 2014 to hear the high-pitched screaming of Tinnitus in both of my ears. Like many, I had heard Tinnitus come and go through the years -- momentary reactions to either very loud noises, or passing phenomenon, but it never stuck around for more than 5-10 seconds on any given spell. Since then, it's been constant -- both ears, stronger on the left, with a pulsating undercurrent (though the pulsations are just louder pitched whistling with quieter moments in between each heartbeat, perfectly in sync). It's wrecked havoc on my life and my family, as I know it does for all of us Tinnitus sufferers.

For me, it's been a lonely condition -- there are no medical practitioners, even in the Boston Area which is renowned for its medical services (especially at the Mass Eye & Ear Infirmary, or MEEI, which I attended) that really fully understand Tinnitus, much less how to even diagnose it properly (forbid treating it!). My family, friends, and colleagues really can't empathize, though I have found some tools to communicate to them exactly what it is that I am hearing - such as GeneralFuzz.net's ACRN utility; my sound is ~8300 hertz -- and that's what makes it more harrowing, that outside of Tinnitus Talk and some professionals at the American Tinnitus Association, there really aren't any people who fully understand and empathize. For this community, and for the resources it offers, however, I am extremely grateful.

As in most cases of Tinnitus, there hasn't been a defining cause identified -- but I have stumbled across a possible cure, thanks to @engineerLA's protocols targeting the Eustachian Tubes. In my case, my ENT at MEEI initially suspected a Temporomandibular Joint Disorder (or "TMJD"), but follow-ups with a maxillofacial surgeon and my dentist ruled it out -- though they found some inflammation. Brain MRI, Brain MRA, Chest CT w/Contrast, and even Abdominal CT w/Contrast all revealed absolutely nothing -- except for some very mild dehiscence and/or retention cyst in my sphenoid sinus which, I am told, is fairly common (though @Karen has encouraged me to keep checking this one out). The underlying behavior of my Tinnitus, though, was that I can control its volume by moving my bottom jaw to the left and the right (and the opposite ear grows much quieter when I do this). This, combined with other factors such as persistent popping of my ears when I swallow and yawn and a dull ache deep in both ears, has led me and my doctors to speculate I have some sort of prolonged ear infection that might be causing this. Inner Ear Infections are impossible to detect, because typical examinations only check for Outer Ear Canal Infections and signs of fluid retention right behind the ear drum - they can't detect infections of the Eustachian Tubes or the Middle Ear in general, and certainly not of the Inner Ear. Fortunately, I'm testing this theory after nearly curing my Tinnitus in one of my ears with a neti pot experiment several weeks ago -- and began a regimen of Antibiotics and Steroids today to control inflammation and combat the infection. We'll see if, at the very least, this leads to some more answers.

Anyways, that was long-winded way of saying that, for now, I'm in the Eustachian Tube/Inflammation/Infection camp of believing what has caused my Tinnitus. I have good days and bad days, like everyone, though I feel that I have some control over when my days are going to be good and they always involve heavy anti-inflammatories the night before coupled with solid, restful sleep.

Speaking of sleep, how are you doing sleeping? Are you taking anything that helps you at night? What about during the day? How quickly did you previously , and are you seeing similar hopeful signs that you might habituate again soon?

Sending you positive and optimistic hopeful thoughts for a wishful, silence, and blissful new year!

Kaelon

 

It may not be a big deal, but I wouldnt use the term sufferer on @Dr. Nagler since he is no longer suffering from his T. I just think its important to adress, especially for new T sufferers, that T may be lifelong, but suffering from it will most likely not be. And in the end, thats whats important. To suffer or not to suffer, that is the question.

 

Right.

I developed severe intrusive tinnitus in 1994. It was incredibly loud and incredibly high-pitched. It just about destroyed my life. My tinnitus today is still just as loud and just as high pitched as when it pretty-much put me in bed for a year - but it is no longer severe, and it is no longer intrusive. My tinnitus has not changed at all. I have changed, but my tinnitus is the same.

I do not believe that anybody chooses to suffer from tinnitus. But you can most definitely choose not to suffer from tinnitus. In 1994 I made two decisions. I chose not to suffer from tinnitus, and I chose to accomplish that in as short a time as possible. Had I chosen not to suffer from tinnitus by searching for a cure, I would still be suffering today. And to me, it makes no sense at all to suffer any longer than absolutely necessary.

I am not saying that the path I took is the right path for everybody. As I have written on numerous occasions, healthcare choices are very personal choices. But the path I took was most definitely the right path for me.

Here is a roadmap, for your consideration ...

https://www.tinnitustalk.com/threads/overcoming-obstacles-to-habituation.6886/

Dr. Stephen Nagler

 

That's a great point, @Jesse Pinkman, and you're right - @Dr. Nagler is no longer suffering, as he points out in his response. I do believe, however, that all people who continue to be "afflicted" from Tinnitus have perspectives, insights, and experiences that set us all apart from people who haven't been afflicted by this condition before. Even those who have learned to habituate and adapt to their Tinnitus, Hyperacousis, and other related neuro-acoustic phenomena, still have been touched by the reality that they have experienced. It gives them a level of empathy and support that the non-afflicted don't really have. This is an important distinction in my mind, and speaks a great deal to the problem with the medical community today: a lack of a sense of urgency to find a cure because the symptoms are largely unrelatable and subjective, rather than understandable and objective. In those cases where Tinnitus can be objectively diagnosed, there's the hope of a cure and at least an understanding of how one might proceed, even if it's not feasible or technically risky. But in the overwhelming majority of Tinnitus cases, the causes will never be definitively determined and as such, the afflicted are left to their own devices. This, in my view, is what makes the Tinnitus Community incredibly resilient - our sense of shared empathy, our spirit of learning, and our willingness to experiment with treatments, alternative therapies, and habituation and psychological processes to help sufferers stop suffering and return to a regular life. And for that, I am incredibly grateful to Dr. Nagler and others like him.

 

Hello there o/
Great to have you aboard, really nice to know you've also had some positives regarding habituation.