Struggling with Severe Tinnitus and Seeking Hope After 16 Months

[bdr]

I am new to the forum and have had severe tinnitus for about 16 months. I have seen at least 20 specialists, including the Lauer Institute in Boston (I live in New York), but I have received virtually no meaningful direction.

I was first diagnosed with venous sinus stenosis, which after a surgical procedure was revised to cerebral venous sinus thrombosis. Both are directly tied to pulsatile tinnitus. My symptoms range from pulsatile to inexplicable and highly variable. Some days the noise is more in the background, while other days it can be utterly excruciating at a decibel level that is hard to describe.

I was prescribed the anticoagulant Eliquis and may be facing potential stenting surgery to relieve symptoms, although it is unclear whether this will resolve the tinnitus and other issues. I have also tried CBT and continue to work with it. On the days when the sound and volume become a horror show, I am looking for better coping skills.

This condition has robbed me of virtually all joy in my life. I am not asking anyone to reinforce that I should feel this way, but rather seeking some form of hope and real advice on better ways to cope and improve the quality of my life.

Thanks very much for any insights or assistance.

 

[Sydnears]

Seek out success stories and read them over and over again, whether on this forum or elsewhere.

I don't know much about the surgical options or their chances of success, so I'll leave that to your doctors. What I do know is that at some point we have to stop pushing for an answer or a solution and start working on acceptance. That's the only way to learn to live with it, and then try to push it aside in our minds. I'm certainly no expert on this, only five months in, but I believe it to be true.

What works for me is a deep soaking bath and meditating to my sounds, which range from two to five depending on the day. I've also given up masking, since it just adds extra noise and my tinnitus is reactive. I'm hoping this will help me habituate more quickly.

Best of luck on your journey.

 

[SueX]

Sorry to hear your story. I'm in a similar position. I don't have any special insights to offer, other than to keep seeking advice from clinicians, since each piece of information is part of the puzzle. And remember, there is comfort in numbers.