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@Johan_L Again, thank you very much for sharing this compelling information. I entirely agree with her on her TTTS points. These periods of myoclonus are episodic and, given such a small muscle, can be difficult to measure. Stellate ganglion blocks are fairly routine outpatient procedures...

@Johan_L Thanks for sharing! In what way(s) did your ENT evaluate your middle ear for inflammation? Was he looking for erythema ? Dilated vessels? How can he look into your middle ear space and not perforate the ear drum? How can he look at your tensor tympani and judge whether it is inflamed...

@Rojo Glad to hear you have an appointment with Jastreboff. Keep it! He has treated many patients with Category 4. Follow his advice closely. Treating cat 4 can be tricky and needs to be done very carefully, perhaps in concert with other clinician involvement, medications or other therapy...

@Johan_L The majority of people with hyperacusis get better with time. Try not to put a time table on it. Recovery can be fast for some and slow for others. No way to tell. If your recovery is slow it does not mean you won’t recover! Try to find some helpful strategies to improve your sound...

@Adriel93 I probably should have said when my tolerance for sound decreases, I have more pain symptoms. Hope that clears it up.

Hi @Adriel93 As @Juan stated, pain radiating to temples, around eyes, cheeks, jaw, scalp and neck are all associated with hyperacusis. I have this too. It is likely referred pain in the trigeminal nerve distribution. Why this occurs is not yet known. A leading theory has to do with...

@Juan Thank you so much for sharing your thoughts. Yes, this is very helpful for me to hear. I have a similar approach to this as you... regardless of what my H is doing, I try to get on with my life. I, too, continue to work and, although it’s been extremely difficult at times, refuse to give...

@Juan Thanks for the advice. 18 months is very new? Feels like it’s been eternity at this point. I’m sorry that you’ve had such a bad case of hyperacusis as well. You mentioned your LDLs were worse than mine at some point, so I am assuming you have made some improvements since then? If so, what...

@Juan 18 months now. Pretty severe, with a LDLs ranging from 60-70 at 1 kHz to 40 at 8 kHz. Lots of mild improvements followed by setbacks, so not much baseline change despite attempts at TRT, modified TRT, music protocol, sound enrichment, multiple meds, etc. My desensitization practice...

@ozgeA Exactly. I think these symptoms are all interrelated, at least for me and probably others.

@Juan I have many increased sensitivities since my hyperacusis began. Light is one of them. Sound sensitivity is the most pronounced, by far, and is quite severe. Your hypothesis is interesting regarding the underlying pathology. I believe my pathology lies within the brain itself, given all my...

@Juan Yes, I do. I experience increased photosensitivity, pain around eyes, and get migraines, associated with hyperacusis. These are amongst several other co-occurring symptoms that I believe to be interrelated.

@Layla23 Levetiracetam (generic Keppra) should cost less than a tenth of what you were quoted out of pocket cost, which likely is brand name. Ask for generic.

Hi @Natashasewast I am sorry to hear of your nightmare too. Thank you for asking about me. It has been about 7 months since the referenced post. I have had better days, where I have little to no pain and reduced H and T, and streaks of setback with pain, worsening hyperacusis and loud piercing...

Hi Andrew, I’m sorry to hear about your struggles! A number of us have pain with hyperacusis and it can be a tricky variable to deal with. It sounds like you have been thoroughly evaluated by an ENT. Have you been seen by an audiologist or neuro-otologist who specializes in hyperacusis and...

Hi @1000 I am assuming you are referring to Rob’s music protocol for decreased sound tolerance? I have tried it but unfortunately had to stop about a month in due to ear pain. The pain was not likely caused by the protocol, but made it uncomfortable to proceed forward. I enjoyed starting to...

Hi @Layla23 Thank you for raising this topic of discussion and I am sorry to hear of your struggles with these challenges. I, too, have the “terrible triad” of severe hyperacusis, sound reactive tinnitus and ear pain, bilateral, for just over a year now. You are doing the right thing by...

Thank you @Audio dad @yonkapin @jimH for sharing your success and encouragement. I just hit the one year mile post on my T&H&ear pain. My gift — random epically painful setback... back to square one sort of! Yonkapin you say it best.. “it’s a wild ride” for sure. Glad to know 1 year is NOT a...

Thank you! @DeepUniverse for sharing your recovery story in such detail and positivity. It is very much appreciated and has provided me hope. Did you experience chronic ear pain in addition to your hyperacusis and tinnitus? I ask because I also suffer from very severe H (LDLs in 40s at higher...

Thanks for your support everyone. I was hoping and praying i'd wake up this morning and it would magically be gone. Not the case. Am incredibly sad, frustrated and agitated. I plan to see an ENT tomorrow if I can get or go to ED. This has been pretty intolerable. The tinnitus makes trying to...

Hi there, I found this forum searching tinnitus online. I developed a persistent tinnitus several days ago and it is driving me bonkers. I feel compelled to reach out for some advice and support, as this is a new one for me. So a little about my case. I noticed an acute onset tinnitus while...