What can be done to help with hyperacusis?

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!

I have read what others are experiencing, like horrible red hot pain when I touched the outside of my ear, not knowing what was causing it. I have also experienced feeling the small hairs inside the middle of my ear. moving, and I can feel the hair slightly cracking, so don't know if they are dying or maybe the inside of my ear is swelling because I have had fluid inside of my ear that is not going away. I am really irritated by barking dogs a couple of blocks aWAy. If the dogs are closr, I can't stand it. People drumming their fingers on the top of the table sends me ballistic.

Hi @sherlorraine, you may notice that I moved your message to this existing and active discussion about Hyperacusis. I did this so that you can meet other members discussing similar issues heightened sensitivity to sound and how sounds are perceived. Click VIEW & REPLY in the email notification to read through past posts and take part in the conversation.
How long have you been dealing with this?

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.

Thanks @dorothynoz45 for you reply. I am sorry you have had to deal with this condition for so long! To answer your questions: I do not have fluid in my ears. I do have hearing loss in the ear that I perforated. I have had audiograms. It is believed that I had two issues going on at the same time - 1. perforated eardrum with resultant tinnitus in that ear and hyperacusis in the opposite (likely from nerve damage at the time of puncture) 2. Spinal CSF leak.

With your Cranial CSF leak, did you ever have extreme pressure in your head and ear? Did they do a brain MRI and if so, did you have pachymeningeal enhancement?

Also, did you ever try pink therapy or white noise or TRT for your hyperacusis? If so, did it help?

Hi! Is your hyperacusis in the opposite ear that you have 90% hearing loss in?

Hello everyone,
I am part of the 'Migraine', 'Hearing loss group' and am crossing over to your group. I am a member of HLAA and have had hearing loss since birth but didn't know about until I was 48 years old. I had gone through life knowing something was wrong but couldn't pin it down, until one day, a Medical Director at the place I was working - told me I was hard of hearing. WOW - what a revelation. I was dumbfounded and it was never the same after that. The years after that brought many diagnoses including moderate to severe hearing loss, hypercusis, tinnitus, vertigo and migraine syndrome. They can't test me for Meniere's disease because I have two aneurysms in my brain stem. I have a sister who has Menieres and is treated for it. I am not treated for it but instead have medication for the migraines.

Because of my brain history which includes three Motor vehicle accidents including one time coma, the neuroscience physicians and audiologists have only been able to provide me with physician therapy, water therapy, neck therapy, vision therapy; I can use a cane for stability, and I have bilateral hearing aids that I use to tone down the noise level to be sure I am not exposed to loud noise or vibrations. The hypercusis acts up when there is loud booming noises and vibrating music. I do not attend any concerts, music festivals, large crowds where their is noise above 90 dBs or any blinking lights since they will start my migraines. Sensitivities to anything that is strobe like will bring on migraines that are hard to stop,
https://www.nidcd.nih.gov/health/listen-infographic
https://www.hearingloss.org/hearing-help/hearing-loss-basics/

My audiologist has worked with my hearing aids to tone them down so that I can comfortably hear wherever I go. I know where I can go and where I should not go which of course limits me. If a place is too loud, I have programs on my hearing aids that I can use and lower my hearing aids to accommodate the noise level. However, if it is too loud, I don't stay too long or I just leave and try someplace else. I usually then write a letter to the establishment and let them know they are a hazard to the people who are going there and tell them I will not be a customer to their place -giving them information from the national websites on hearing health statistics to show what happens to ears over time.
https://www.nidcd.nih.gov/health/hearing-loss-older-adults
https://www.hearingloss.org/hearing-help/hearing-loss-basics/

48 million Americans have some sort of hearing loss and you / I are in that number. Our kids are in that growing number as well. Sobering isn't it?
Eloise /Hearing Loss Support Specialist
and HLAA Member

I have hyperacusis and tinnitus in both ears and it is constant never stops. Have had it since about 1988 I believe, have been to different ent’s and had ear surgery to help relieve the tinnitus but made it worst. I have tried multiple things to no avail. Would sure like to find a treatment that works but so far no.

@lhester10 Welcome to connect.If we can help we try I have tinnitus and the only thing that helps me is Mullein it's a tincture ,herbal, or there is Mullein tea

@lhester10 I just read a great article today in the latest edition of Hearing Health magazine, which is the quarterly publication from the Hearing Health Foundation (hhf.org). They are currently doing research into hyperacusis and part of their funding is coming from a non-profit called Hyperacusis Research Ltd. (hyperacusisresearch.org). The article was written by a founder of Hyperacusis Research, Bryan Pollard, who decided to start the Foundation when he couldn't find adequate information online. Their website has a lot of good info also. HHF also is doing research into Tinnitus, so it is worth looking at both websites for info. Another source is the American Tinnitus Association (ata.org). Good luck.