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What can be done to help with hyperacusis?

Hearing Loss | Last Active: Sep 8 6:30am | Replies (106)

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@shelby2019

Hi to all! Forgive my long post but I wanted to share my experience to see if anyone has experienced this as well...here is the shortened version. 1 year ago, I perforated my left ear drum w/ a Q-tip which was painful but at that exact moment I also experienced an immediate shooting pain to my right ear with resultant hyperacusis that hasn't stopped since the trauma (I had NO previous ear or health issues prior to this). So at that point, I had tinnitus in the left ear and hyperacusis in the right ear. Furthermore, my left EXTERNAL ear area is extremely sensitive to any touch. Also, I can't eat, walk, brush my teeth, fix my hair or anything without it causing extreme pain in my left ear. Multiple ENTs have been puzzled by my case and could not provide an explanation for my symptoms. To complicate my case, 2 months after perforating my ear, I began having extreme pressure in both of my ears sending me to the ED in excruciating pain and was seen by a Neurologist who discovered the pressure was responsive to position and my head MRI revealed pachymenigeal enhancement which suggested a CSF leak. So the question was now, is the pressure coming from a CSF leak or was it a sense of aural fullness coming from my ear trauma??? I ended up seeing more Specialists felt that the pressure was coming from the leak and did 3 blood patches. Around 3 weeks post blood patches, the pressure started to improve and was no longer positional in nature so I likely suggesting that I did had a CSF leak in addition to my ear problem. Post patches, I still have the exact same ear symptoms with the sensitivity and tinnitus in LEFT ear and hyperacusis in RIGHT ear. I occasionally still feel like my ears have some fullness but nothing like the pressure that I felt causing me to go to the ED .... however, I would expect that with my ear issues, the sensation of fullness at times could also be symptom. My quality of life is a zero, as I can't go anywhere or even hardly do anything inside my house because of all of the ear pain. I am still trying to find answers and a specialist that can help me. I feel that it is highly possible that when I perforated my eardrum with the hard edge of the Q-tip that I possibly hit a nerve at that time which could explain the shooting pain to the opposite ear and all of the other symptoms that I am having. Has anyone in this group ever experienced anything like this?? I welcome your thoughts and comments. Thank you!

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Replies to "Hi to all! Forgive my long post but I wanted to share my experience to see..."

Shelby2019 I must reply to you and hope this isn't too long. Rarely do I ever hear about spinal fluid leaks because my experience over a long period of time is that so few ENTs know what to do with spinal fluid leaks that I will say there aren't any. First I have questions. Has an ENT told you that you currently have fluid in either ear? Has your hearing diminished? Have you had an audiogram? Our experiences are not exactly the same but we certainly have similarities. When you said that multiple ENTs were puzzled I knew I had to respond to you.For over 50 years I had been to 16 doctors in 6 states who all treated me for fluid in my right ear. I have had over 40 myringotomies with ventilation tubes plus three other major procedures. My ENT sent me to a neuro-otologist for BAHA evaluation and he took one look in my ear and immediately told me I had spinal fluid leaks. Yes, leaks in my right ear not my head, not my spinal column, but my right ear. It was decided the condition was a birth injury. I had a right inner ear nerve section in 1992 and developed a waterfall of spinal fluid in my head and since that time I have a CSF Shunt in my head. After the shunt I still needed the tubes in my ears because although I did not know it nor my doctor I still had spinal fluid leaks. The neuro-otologist BAHA evaluation and his " leak revelation" resulted in surgery two months later and my "ear hero" closed off 12-13 leaks and permanently closed my Eustachian tube. Is it possible to get to your spinal fluid with a q-tip? It doesn't seem likely unless the leak is closer to your ear. I will tell you this less than a month before I had the leak surgery the fluid was coming out my ear and down my cheek. I was stopped at a traffic signal and had to take my ha out and blow the fluid through it. What a pleasant thought! Hyperacusis, single tone tinnitus, pulsatile tinnitus, and Meniere's are mine also. How to find a doctor who will help? I don't know. I struck out 16 times. After the fact I would recommend a neuro-otologist who has experience in ID ing and treating what I have just described perhaps at a sizeable teaching hospital. I went to Mayo in MN a long time ago and can only imagine the progress they have made since. I was given good advise. It takes awhile to tell it and I pray you find the resulting answers and it won't take as long as it did me. I hope this has been understandable and helpful.