Hello All + My Tinnitus Journey

Hello everyone! I've been lurking a bit in the shadows on this site since first getting tinnitus around 3 months ago. I finally decided to join because I feel like there's a real sense of community and encouragement (in the right places), and it's therapeutic not to feel alone. I've always needed ear plugs to sleep, and silence was a retreat for me until my brain decided that silence was the enemy. Music composition and mixing has always been a strong hobby and passion of mine, and I had been working hard to get enough songs completed for a CD until tinnitus showed up and screwed the pooch on that.

I suspect I've always had a level of tinnitus, but my brain was able to filter it out. I don't know how, and I don't know why, but around 3 months ago everything changed.

To give a brief medical background, since college I've developed intestinal issues and neuropathy in both my hands and feet, and had thought that I'd been dealt all I could handle. Due to this, the medication list I was on at the time includes:
1. Amitriptyline 50mg 1 X day (neuropathy)
2. Gabapentin 600mg 2 X 2day (neuropathy)
3. Loperamide 2mg 1 X morning (IBS)
4. Smattering of supplements that never really felt like they were needed

3 months ago I decided to try and wean myself off of the poisons I was putting in my body, starting with Amitriptyline and Gabapentin. I never really felt like they did much for my nerve pain, so it seemed like a good idea at the time. I halved my gabapentin and cut down my Amitripyline by 10mg (20%, which was probably too much too quick). At the same time I got a really bad sinus infection, so I was put on Amoxicillin and later Prednisone.

A week later I woke up in the morning with what sounded like Morse code in my right ear. I thought it was something electronic in the house firing off, but upon investigation found out if was originating from me. Over the next week it spread to both my ears, sounding like a fire alarm going off in my head + electronic generator zaps that I could literally feel happening in the back of my head. It was terrifying and I couldn't sleep for days, putting my deeper and deeper into depression and hopelessness. I had multiple nervous breakdowns leaving me bent in the fetal position and sobbing, wishing a stray bullet would pass through the house as my amazing wife was helpless but to watch. After four weeks of it, I finally had had enough and saw my primary, who worked with me for over four hours to try and put together a thorough line of attack to address the anxiety and depression.

I was prescribed Hydroxyzine and Clonazepam... when I took it I felt like my brain was numbed of the fight or flight it had put itself in. I truly believe it saved my life. I have since stopped using them as it's not a long-term solution, and I find the anxiety creeping back in again. My neurologist thought it could be due to Amitriptyline withdrawal, but after going back to the max dose for over 2.5 months it hasn't made on ounce of difference. I've long-ago given up on medical professionals saying to 'just wait it out', because it sounds a lot like 'uh no idea' to me.

My tinnitus has consistent elements and varying elements to it, including an oscillating super-squeaky wheel in my right ear that's going constantly and a ringing sound between 3-7 kHz that moves around on its own. There's also a high frequency, almost white noise going on all the time, similar to how it sounds when you can hear electronics turned on. The ringing is the worst, and often the electronic sound I can 'feel', like vibration in my head. Every now and then the sound goes out in one of the ears, there's a lot of ringing, then sound comes back. I've been tested at the ENT and show no hearing loss. The worst part is the hyperacusis, especially in the 2-4K range. Sibilance, and S's in general are really painful. It feels like I have an inner ear infection despite all doctors saying 'nope don't see anything'. It's one thing to hear the noise...it's another to feel pain on top of it.

If I move my neck and jaw, I can change intensity and pitch. I'm currently working with a chiropractor and pulsatile tinnitus to reduce the stress load on my neck and jaw. I've always lifted weights, and found out that some muscles are compensating for others not doing their job, so perhaps there's a muscular issue causing this - who knows? I'm so tired trying to figure it out.

It's so hard when the hobby you love, the ability to create music and feel a sense of accomplishment, is ripped away from you while you're left trying to pick up the pieces and figure out why. Did I expose myself to too much noise with headphones? Was it the sinus infection triggering things? Did stopping Amitriptyline break my brain's noise filter? Was this something that was going to happen anyways? The more I think about it, the more I start to go crazy. It's not worth it, and the pain put on my wife and 1 yr-old daughter due to this is something I have a hard time forgiving myself for.

I am encouraged by reading all the kind words and messages of hope - this is the one life we have, and it sucks that we've been dealt this hand - but we also have a chance to work on ourselves. I've started meditating if only for the calming effect, inspired by the quote I'm sure we've all heard at least once: "You can't calm the storm...so stop trying. What you can do is calm yourself. The storm will pass".

I look forward to our future interactions.

 

Ill tell you that I am also in a VERY similar boat. I got mine in October, and its almost exactly like yours. I have a general buzz in my head (like an old tv) and the Hyperacusis is more just like I hear higher pitched sounds. I will say, Im confident it is a Neurological problem (overactive Neurons in the nerves) and new devices like Nueromod will be a help for people like us. This condition sucks, but the good news is we got it when the rest of the world finally started paying attention, and interventions are being worked on. My best advice is to continue your life, and try your best to lower stress, and it clearly has an affect on all of us.

 

You're absolutely right that stress is a major culprit. It's like the days where you're care-free don't hurt or bother you that much, but then you have one night where your body just ramps up the anxiety for no reason and it lasts for days/weeks/months. It's almost like when you don't hear anything, you react negatively because you're afraid it will come back...and then it does. Self-fulfilling prophecy. I'm an anxious person by default, so I've considered trying some medications even though I HATE adding more crap to my already exhaustive list.

 

Welcome to the forum. Yes the storm will pass. I didn't believe it when my ultra high pitched T hit me and then severe hyperacusis joined in the misery. I was in a mess physically and mentally. I understand what you are going through. So are most members here. We have been where you are. The sufferings are most intense initially as we are resisting this new ailment with strong emotions. But yes, this will pass and hopefully slowly your body will begin to heal, especially with some helpful strategies. Your T is still relatively new. Give it some time. Focus on the positive, especially try reading the success stories where you will find hope and learn some helpful strategies. Mindfulness meditation is quite helpful so you are on the right track using this approach. Good luck to your progress. God bless your recovery.

 

Some thoughts

1. The space between the C1 and C2 vertebrae
2. The atlantoaxial ligament as the dorsal ramus emerges
3. The deep side of the semispinalis capitis, where initial piercing can involve entrapment in either the muscle itself or surrounding fascia
4. The superficial side of semispinalis capitis, where completion of nerve piercing muscle and its fascia again poses risk
5. The neurovascular intertwining of the greater occipital nerve and the occipital artery

This can relate to just about everything (every word) that you posted, minus medications. It appears to be cervical.

Physical Therapy

 

How did you overcome the strong anxiety and depression? It's amazing how something like sound can cause such a strong visceral reaction.

Greg, thanks for all the thoughts. I think it's probably due to my neck/shoulders, as it gets a little better when I stretch my neck back and my shoulders pretty much always feel tight. Would a physical therapist be able to address that (I'm actually seeing one - meant to say physical therapist instead of 'pulsatile tinnitus' as was in my post. Weird autocorrect) or would a neurologist be a better solution?

 

one form of hyperacusis is neurological, the other is peripheral.

 

It was not easy. In fact initially I had to depend on medications just to survive. I don't encourage using drugs unless things are out of control. There are natural alternatives that can calm the mind and combat depression. Try google search on that to get some idea what can be used as natural alternatives for anxiety and depression. I also tried to go back to live my life, trying to enjoy things I used to enjoy. If you wish to know the detail of the strategies I used, here is my success story. Perhaps it can help you. God bless.

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

 

I assumed that you don't have pulsatile tinnitus as primary - otherwise I would have mentioned blood flow within arteries instead of physical somatic treatment.

As neck muscles gradually weaken, the greater the potential for nerve entrapment and dysautonomia, such as tinnitus.

Another cause of cervical physical tinnitus is the rami communication nerves that connect the spinal nerves to the sympathetic plexus. The sympathetic plexus also reside between the alar fascia of the neck and the longus colli and longus capitis muscles.

A third cause is unbalance of the C1 axis that places pressure on jaw muscles and nerves. With this, it's the jaw muscles and nerves that can contribute to tinnitus. For this keep upper front teeth inline with lower front teeth. Keep lips closed with tongue balanced.

You may have all these particular mentions going on.

I would consider a discussion with your therapist about occipital nerve compression which is gentle stretching of neck upwards. Then discuss semispinalis capitis, longus colli and longus capitis trigger point. Maybe the sternocleidomastoid and trapezius muscles as well.

Stay in touch and I hope the best for you.

 

Thank you for the words. It's hard when your routine has become so predictable that you anticipate pain and expect it based on the experiences your mind is now associating it with. I'll definitely read your post.

This is all great information as I see my neurologist today and will definitely bring this up. It sounds like you have a background of some sort in the medical field, or at least sound like you definitely know what you're talking about...I do indeed have insurance if I see a statement from Greg in my mail for a consultation

 

@Chalx I should add the scalene muscles for therapy discussion. There are 300 possibilities for neck problems, but only about 30 associate directly with tinnitus. You may have another issue within your neck and spine as causing muscle spasms besides or in association with a nerve(s).

Release of muscle tension to nerves, often the occipital nerves may help as you mention head vibration. Change in intensity and pitch in your situation would refer to your jaw in association to your C1 area axis and maybe C4- C5 as well, but it's neck muscle compression that reacts to your muscles and nerves of the jaw (minus teeth trauma and independent nerves of mouth) so probably muscle reactions to the ear - hyperacusis. I don't think that medications is cause and hearing loss appeared to be limited.

There are 1500 ways that facial/mouth/thyroid can associate to tinnitus, but only about 30 has most possibility. There's three primaries with the jaw. One is damage to the joints and that gets involved, but yours is more likely jaw muscles and nerves from a reaction of the C1 axal which is being intensified from neck muscle interactions also where there's upper tensed nerves in the neck.

Neck muscle therapy may greatly help along with teaching the mandible to open with protraction instead of retraction. Keep upper front teeth inline with lower front teeth, tongue centered and lips closed.