My Auditory Challenges

Hi, all. I figured I might as well post a synopsis of my life for the past year and 4 months. It'll be interesting to hear if anyone here has experienced anything similar and recovered. My life sure has changed a lot, and it'd be nice to have the old me back.

I am currently 25 years old.

In September 2012 I began to experience a spasm in my left ear in response to my own voice. Throughout September, I went to many doctors and tried amoxicillin for a misdiagnosis of ear infection, and meloxicam for a misdiagnosis of TMJ inflammation. I developed hyperacusis throughout this month, and at the time I believed it to be caused by TMJ disorder.

In October my tinnitus began. I remember hearing it over the sound of the car engine on the drive to my ENT. Near the end of October I saw an audiologist and a very well regarded neurotologist. I had many tests done, including an LDL test, and I was diagnosed with hyperacusis and tinnitus. At this time my LDL's were around 70 and 80.

The following months I began to listen to pink noise, and continued to progressively worsen. I made sure to expose myself to gentle, comfortable sounds, and to not use hearing protection in normal environments. I stopped working because it became too painful, and I started experiencing a little dizziness here and there.

On new years eve 2012, I got drunk with a friend and we played with his RC helicopter. At the time the noise felt fine, but the following day the sensitivity had increased as well as my tinnitus.

Near the end of February I got a very severe cold, and the sound of my own coughing once again worsened my tinnitus and hyperacusis. My tinnitus eventually went back down, but the hyperacusis remained. I started experiencing burning pain in my left ear, and an electric shock type pain and fullness in my right ear that happened in tandem with very piercing fleeting tinnitus. The dizziness got much worse at this point as well, and I was stuck in bed for two weeks straight, worrying that I would throw up if I moved too much.

The following months the pain died down, but the hyperacusis did not improve. I purchased in ear sound generators on the advice of my audiologist, and used them for a while, but they began to cause very severe sharp pains in my ears at the lowest volume, so I stopped using them. The same thing started happening when I wore ear plugs for extended periods of time. It appeared my ear canals had become sensitive to touch.

My measured LDL's at this point had lowered to the 50's and 60's. I stopped exposing myself to sound, because at this point it had become obvious that it was only making me worse. I retreated and began to wear hearing protection much of the time. Whenever I cooked or cleaned, whenever I went to the store, whenever I spoke to anyone.

My condition did begin to improve a little bit, and I watched the full series of Breaking Bad in November and December on very low volume with subtitles with much difficulty. Often following episodes my ears were in so much pain I would have to take days off from watching. By the end, my ears were in so much pain I had to retreat to silence once again. Ever since then the pain has been fluctuating. Some days are good, other days are horrible. Sometimes there is no rhyme or reason for the pain, but most often it is caused by uncomfortable levels of noise.

Right now I am in total silence and my left ear is burning in horrible pain. Normal conversation levels of sound causes awful pain in my ears that gets worse the longer I am exposed.

In addition to ear pain, I get very severe, but thankfully transient, burning pains on my face and neck. I have ear fullness, violent spasms in my left ear when I speak, and moderate nausea and dizzy spells that can last for hours at a time. I get very strange numbness and tingling on the entire right side of my head and face, especially in the temple and cheek area. I have had every head scan imaginable, and there is no evidence of a tumor. My neurotologist cannot explain what is happening to me.

There is so much more to my story, but I also have carpal tunnel syndrome and find it difficult to type for long stretches. Because of this, I had to shorten it quite a bit and leave out potentially important details. Ask any questions and I'll try to make my answers as detailed as possible.

 

I can only say how sorry I feel for you Must be very difficult. Is the LDL level 70 and 80 high nd do you have any idea why it was that high?

 

Thank you. My LDL's are very low now. They used to be 70 and 80 back when my condition was mild, but since then I have severely worsened. The last time I had an LDL test was in April 2013, and they measured 50 and 60. It's possible they are lower now, they definitely feel that way.

 

I feel for you brother. I also quitted job due excessive noise and my tolerance havn't got back to normal. I know i abused my ears a lot with music and I'm 30, how did you get to your severe condition in the age of 25. People are different, i know, but was it with music also. Damn its hard to get this beaten up by your favourite hobby/passion. Wonder how guys like Richard D. James hold their ears together with putting up so much machine noise(in a good sense) lol

 

yeah, it was from noise as far as i can tell. i've been to hundreds of concerts and i played drums regularly for over 10 years.

good to hear there are other Aphex Twin fans hanging around. =)

 

Are you taking any meds to help you? Sounds like TTTS and I know I have the same thing. Personally for me it's only become worse and I believe it's from my super high anxiety. I think I have H too and some mild tinnitus. You are having pain from the aggravated TN nerve. Has doc considered a med like Tegretol? Or a benzo? Did you also have CBT alongside wearing your gens? Do you think you have phonophobia perpetuating your TTTS? I am just wondering, not saying this is what I believe..looking for answers myself, but it wasn't until I became very scared of noises that my TTTS symptoms worsened..

 

i can't respond to your whole post because my wrists are in a lot of pain from RSI, but i will respond to this.

my symptoms significantly worsened long before i even considered noise could be causing them. i'm still not afraid of noise, i am afraid of pain.

 

Have you tried any medications?

 

Matt I would just like to say that all your symptoms sound like TTTS, which by eating or talking can be set off, alongside of noises, and some say by even thinking of noises. Trigger point therapy would be a good non med option for you, alongside CBT. Also meds such as clonazepam and perhaps Tegretol for the burning nerve pain as the TN nerve is directly involved. TTTS happens frequently in Hyperacusis and Tinnitus, along with TMJ dysfunction. I would suggest you find a better doctor familiar with the symptoms of TTTS, so you can get proper help. Also a good med would be Lyrica.

 

i went to a very well regarded neurotologist and he suggested i have the tendon controlling the tensor sympani muscle surgically severed. upon researching this suggestion, i found that many were not helped by it, and some were made worse. he gave me gabapentin (very similar to lyrica,) of which i took 300mg and it made me very sick even and made my T temporarily spike. it reduced my H slightly, but not appreciably, and not enough to be worth the horrible dizziness and nausea from the drug.

i sought out trigger point therapy in the beginning, and went to both an osteopath and an RMT. nobody around here really does much trigger point work. my hands are too messed up to do it myself, but i don't know how so i couldn't anyway.

i was exposed to too much noise last night so today my tensor tympani muscle is in constant spasm, i can hear it thudding and snapping away. it's been on and off today, seems to come in clusters with breaks in between. it is aggravating and painful.

 

Hi Matt, No I would not suggest surgery either, however I have read some accounts of people who have had great success from it. Though it would be VERY last resort for me too...and even then..The thing about those strong drugs is that initially they are hard to handle, like SSRI's, but your body does adjust. There are many to choose from and one might be better than the other (for you). What DOES help me is a benzo, It stops the darn muscle from thumping and brings great relief! Have you tried that? Also do you take magnesium supps? I am sure you do...

 

i've been on benzos for months at a time and they don't really make me feel much better. i feel very relaxed, which is a positive, but they do not affect the spasm in my left ear, nor the non-spasm related sensitivity and pain in my right ear. i tend to build tolerance to benzos quickly and experience very severe withdrawal as well, which ends up in a drawn out and unpleasant taper.

i took magnesium citrate and liquid magnesium glyconate for months, no changes there either.

 

Well, I have the same thing..my right ear was just burning intensely, so I turned off the rain sounds on you tube..my face is also numb and burning too. It's quite evident that it's the Trigeminal Nerve. TMJ can also cause these symptoms. I know it's tough. When using the sound gens, did you also have CBT? that can be quite affective from what I have read. I think you should attempt the gaba drug again, or a similar one, like Lyrica..also have you applied hot compresses on your ears? I have done alot of reading and I am suggesting what has helped for others, incl myself. I am only 5 weeks in, so I have no idea why my ears are so bad..it started in the right, and moved to the left, which now gives me more trouble. I imagine it's all par for the course in terms of H... I am going to start up with cranial sacral therapy again too..I will keep you updated, since we are similar. I will be seeing ENT soon too.

 

after 5 long years im sure i do have a lot of trigger points which is the main cause of my T and dizziness :/

 

i've tried setting it off by thinking about loud noises and it doesn't do anything. i once spent about an hour trying to envision myself inside a loud rock concert setting, fireworks and pyrotechnics included, without ear plugs. absolutely no effect on my ears. i've had dreams where i actually believed i was being exposed to very loud noises and woken up with zero negative change in my ears.

i simply do not buy that my condition has anything to do with my 'beliefs' or thoughts about sound.

my condition severely worsened long before i believed sound was involved.

 

Hope you find the help you need Matt. Take Care.

 

To Matt I wanted to say how awful his condition sounds and to let him know, although it is nearly two years since his post, that I have been going through a very very similar affliction complete with ear pain, hyperacusis so severe I can not leave home, huge startle reflex for a number of sounds that are not particuarly loud, including my own coughing and sneezing, and raging tinnitus which worsens with each sound exposure. I also found that pink noise and white noise made it worse and was unable to tolerate the white noise sound generators, which simply introduced a new tinnitus noise. There is also hearing distortion for certain sounds. It has taken nearly two years for me to figure out this is acoustic shock disorder and tensor tympani syndrome. An excellent research study by Dineen Westcott Moore gives a succinct summary of the disorder and its symptoms. Treatment is very slow once the condition is entrenched (and I hope yours is better by now) and can include osteopathic treatments (only just started), cognitive behavioural therapy, and sometimes muscle relaxants. I have no success story yet, just a slow and careful climb out of an awful condition, always with ear protection when needed and low ambient sound at all times when in safe parts of the house but not too close to the ear. The ttts is very susceptible to escalation of hyperacusis and tinnitus according to a behavioural therapist in England I consulted with, until you start to get it under control. That has been exactly my own experience. With treatment she suggests maybe a year to get betteris. Let me know how you are making out and maybe you learned some things I would find helpful.

ljj

 

hi, ljj. i actually only made my original post about a month ago, and i am doing roughly the same.

since i made my original post, i've begun to experience very bad headaches along with new and more recent spells of vertigo that have twice put me in bed for days at a time. these headaches and vertigo spells come on suddenly and seem to have nothing to do with exposure to sound.

to treat my hyperacusis/ttts i try my best to not wear hearing protection at home. i can't handle the direct sound of my computer fan (it is a very loud gaming PC that i have measured at 70db) so i use extension cords and USB hubs and run the cables to outside my room. i can still hear the fan, but it is muffled enough to be bearable. i use this as my sound enrichment, as i find that white noise and music make my tinnitus spike to unbearable levels and often make my ears and face burn in pain. i try to listen to the muffled computer fan for at least 2 hours a day, but i often go much longer.

i tried going to an osteopath long ago when my issues first began. it was very relaxing, but very expensive, and i saw no real relief.

i am considering saving money to travel out of province and see a TRT clinician in Ontario, but i'm very low on funds so it may take a long time. i am also wary about the treatment, as i've tried generators before and although the sound was bearable, the physical touching of the device inside my ear canal caused intense pain. also, as i mentioned before, white noise aggravates all of my symptoms. i am usually okay while i am listening, but later when i stop, my tinnitus is SCREECHING and my ears are burning and full.

 

Can't you find a state funded psychiatrist / psychologist in your area? I know they mostly have no TRT training but a lot of them have experience in helping patients with tinnitus and other health issues.