ISSHL,Tinnitus, Hyperacusis and Facial Nerve Symptoms

[Jake5]

Hello to all,

I have been aware of this forum for about a month now and thought I would introduce myself posting to see if anyone else has had success with a similar situation.

I have been diagnosed with Idiopathic Sudden Sensorineural Hearing Loss with Tinnitus.
As well, I have Hyperacusis which I have dealt with since the hearing loss. What is worse is I am a professional musician and this whole thing has upended my life as I am sure all of you know all too well.

My hearing loss happened two months ago so this has all been evolving over the past weeks. It is just one ear (right side) and my hearing dropped to just about nothing.
I was able to catch this pretty quickly and after one week of Prednisone I gained 20%. However the hearing has been the same since then.

The tinnitus I have is a loud hiss like white noise, along with a very high frequency that just hangs in the background. What hearing I do have in the ear is distorted and with the Hyperacusis I'm very sensitive to high frequency sounds. As well, I have this sort of pseudo-numbness feeling in my head. It is not real numbness as I can feel my face etc... yet it sort of feels like the acoustics of the ear with the tinnitus adding some aggravation will resonate throughout and cause the neurological symptoms. The symptoms go into my top teeth, sinuses, right side of the head and a little down in the right cheek. Sometimes if I graze my fingers across my head the symptoms light up. Or I can tilt/move my head or look up with my eyes. Also my right eye is a bit twitchy.

I have done my protocol of oral steroids, then 3 intratympanic steroid shots in the ear,
20+ hyperbaric oxygen treatments and also just started acupuncture, rolfing with cranial osteopathy. I have also been taking turmeric, vitamin D and fish oil.
I am not sure the alternative medicine stuff will work but I'm throwing anything and everything at this.

I have had my MRI to check for vestibular schwanomma tumor and also did an MS protocol for the neurological symptoms. Those were all clear. I just saw the Neurologist today about the numbness symptoms but he thoroughly checked me out and didn't really have any ideas for it. I also did balance testing at my ENT office and they checked out all that which I passed pretty well.

So far I have come across a few posts in this community with similar facial nerve symptoms. I am pretty confident to rule out Bells Palsy, Meniere's disease, MS, Ramsay Hunt Syndrome. I have no other symptoms. Did not have any illness, or fever etc through all of this.

I have a hard time conveying to my doctors what is exactly going on as they seem a little clueless. I do believe the Hyperacusis/Tinnitus is somehow aggravating the Trigeminal nerve. Anecdotally I feel like it all calms down when I use my new AirPod Pros with noise cancellation. I have read that some anxiety medication can help and I may try that for a month to see. I also have an appointment with the audiologists that specializes in hearing aids next week so I will see if that helps too.

If you made it through this entire posts thanks for your time and if anyone else has had a similar situation as mine, I would like to hear if they have had any success treating this neurological issue.

 

[Mister Muso]

It's a special kind of torture for musicians. I was able to resume playing the piano again after 3 months of resting my ears, but only using earplugs or earmuffs. Your symptoms sound similar to mine but they should ease over time. I'm 8 months in and the first 3-4 months were rough but it's gradually getting more bearable. Doctors have helped very little. We have to become the experts on our own condition.

 

[Jake5]

Yes it is truly a crushing predicament for a musician. Not to take anything away from anyone else as this is a terrible medical problem for anyone. However I think the statistic for ISSHL is something like 4K-5k out of the 300+ million people in the USA/year.
For it to happen to someone who makes their living with their ears? It's like some cruel joke. It is like winning the opposite of the lottery!

Glad to hear you are still trying to play. I am determined to not let this define me and will try to push forward with all my musical endeavors.

 

[billie48]

Warm welcome to the forum.
Sometimes matching other members who are reading your post and who have similar symptoms may not bring enough response as the readership of the Introduction is not as much as the main support forum. I recommend you do searches of your symptoms/problems to see if there are prior discussions on them. For example here is a search on Idiopathic Sudden Sensorineural Hearing Loss and it yields quite many prior threads on it:

https://www.tinnitustalk.com/search...Sudden+Sensorineural+Hearing+Loss&o=relevance

It seems your musician background may exposure your ears with repeated episodes of acoustic traumas which can accumulate the damage until one day the tinnitus and hyperacusis just surface. Hope you find some useful info to you in the searches. Good luck. God bless.