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As some of you know I have tinnitus and pain hyperacusis. I have been in treatment at the Metro Tinnitus & Hyperacusis clinic in Mississauga for the past three and a half months (will be for two years) after being assessed as "catastrophic." The ear pieces I wear dampen sounds while still...

@Vassili, wow, pretty excited to see you posted. Have been checking to see if you have been posting and haven't seen anything from you since Christmas (nice post by the way!). Those are pretty big time teeth. Probably still needs time to settle down. How are you doing? How are the...

Where did you find this information? I am waiting for changes to MAID in Canada (if it does not take too long) and hopefully qualify for medical assistance in dying if this does not get better. I don't want to go through the torture and time for TRT if it is going to do nothing or make...

Book recommendation: If you haven't seen the movie or read the book, "Catch Me If You Can" is a great read. It's the true story of Frank Abagnale Jr., one of the greatest con artists in history. He impersonates a: copilot, doctor, lawyer, sociology professor, FBI agent, and U.S. Bureau of...

@Vassili I'm so sorry you are feeling down. I don't want to sound like a Pollyanna, it's just that sometimes when we are down, we see everything negatively and don't see the positive (even if it's minuscule sometimes). You have come a long way, and there is still time for more...

@Rosie-ORose Thank you for sharing your story. Your attitude is inspiring and gives us hope to cope.

@Ava Lugo With ear plugs I can still hear sounds and still get pain. If I wear ear muffs, then most sounds are pretty quiet. The sounds that are the worst are people's voices outside of the home (too loud even while wearing ear plugs AND ear muffs). I tried to cook with just ear plugs but...

Yes, it is reactive.

I did not find a difference in the tinnitus & hyperacusis with the taper. I know your appointment with the neurologist isn't until February... Have you been waiting long? If less than a year, would you care to share his/her name? I'm pretty scared right now as I have been put on Azithromycin...

@PeteJ My deepest sympathy for the loss of your father. May you find comfort from family, friends, and this community.

@David Vance I am in Simcoe County.

@David Vance Hello David. I have discontinued the Gabapentin. I was put on 300 mg a day, then 600 mg, then 900 mg, then 1200 mg and it wasn't doing a thing for the burning/nerve pain on the top and back of my head. I am on 50 mg of Trazodone and I am finding no issues with it aside that it...

@Jazzer My sincerest, heartfelt condolences to you on the loss of your beautiful wife, Sylvia.

I got tinnitus back in April. At first it fluctuated but then seemed to settle down. It also got quieter. I was doing really good. Then, I had a setback, then another one. Since then, it does not seem like I'm getting better. Now my tinnitus is fluctuating again.... most sounds will make...

It sucks big time not being able to listen to music or watch TV. Actually, I do watch my two favorite TV shows every week but with no sound (captions only). Yesterday was the first time I listened to music ( 3 songs really low volume) but today I tried it again and it caused me burning pain...

@Michael Leigh I find great comfort in corresponding with you. Thank you for taking the extra time to look up my previous posts in order to help me. Yes, being a caregiver is hard. You are a good person to have looked after your parents. I have a grown son. I was a single parent for him...

I cannot use sound enrichment to distract from the tinnitus noise. I get burning pain and the tinnitus gets louder. My hyperacusis seems to be getting worse with pain in the top/back of my head almost constant now and burning sensation in my ears on and off. I try not not overprotect from...

@SummerDreamer Thanks for the info. I get a lot of burning pain top/back of head (even in silence). I sure miss it... my sewing room is my "happy place'. Sometimes I go there and just play with fabrics. I try not to overprotect in the house but have to for certain sounds and when I'm...

Thank you sharing. Your story gives hope.

Hello LilSass Thank you so much for the information! I will look in to this. How are you doing?

I'm glad you found the book "The Girl With The Dragon Tattoo"". Sometimes I have trouble reading too. So I don't. Then, I will pick up a book at a time of day when I'm not in too much pain to read even for a short time. We just have to listen to our bodies. If you are able to read it, I...

@Rjbookworm Hello Ava Thank you for posting to me. I have not been able to see anyone yet. I was told getting in to see the other ENT who knows something about tinnitus & hyperacusis will take 2 years. Getting in to see a neurologist in my area is anywhere from 18 months to three years...

Yes. I am in Canada and the wait times for specialists are obscene. I called around a number of offices, and one neurologist had a wait time of three years!!!! 18-24 months was average for the others.

I am so tired of the pain. The tinnitus, which gets much louder at night is bad enough (sometimes fire alarm loud) but the burning pain on top/back of my head for most of my waking hours and the burning ears on and off several times a day (even in silence) is getting to be almost too much...

Awesome! I am so happy for you! :)

@100Hz I am so sorry to hear of your plight. Like you, I am unable to live a normal life. I am housebound. Inside 98% of the time. I cannot drive, shop, conversations can cause pain, can't do many of things I loved doing. Never know what seemingly every day sound will cause me pain...

@100Hz Your avatar states you have had tinnitus since 2015. Have you had pain hyperacusis since then as well? Are you able to live a somewhat normal life? Do normal every day sounds cause setbacks? (Just wondering if it can improve with time)

@SummerDreamer You wrote: I actually had a measure for this when I used my sewing machine (I’m making a quilt!) - before it would cause me some burning straight away but then it completely went away after that week. I have pain hyperacusis and have been afraid to try my sewing machine...

@weab00 I feel for you. Like you, I too have noxacusis and find it extremely difficult to know what will set off pain/setbacks as it is usually delayed. Recently, a conversation with one person outside where we had to talk a bit louder, caused me 6 days of burning pain in my head and...

@100Hz Thank you for the great article. Just want to clarify the portion below. I am cautiously optimistic that FX-322, OTO-413 and SPI-1005 will bring relief to us, but I have also read OLD posts that said cures was coming and they never came for one reason or another. I have noxacusis...

@Marin Marin, I am so sorry about your setback and hope that it will improve soon! I will be thinking of you. :huganimation:

@Marin Ditto. I am so sorry that you have to deal with this as well. Like you, I do find that some days my ears can't tolerate being outside. I live in the country and you would think it would be quiet, but there are trails beside us and across the street which are used by dirt bikes and...

I have found this to be true for me as well.

@Marin Our tinnitus & hyperacusis situation sounds very similar. Not sure what kind of ear plugs you have. I have custom musician ear plugs so I can still hear sound but they really help cut the bird noise when outside. I find being outside in nature is the one thing I can tolerate when I...

Some things make you laugh out loud even when no one is around.

@serendipity1996 I believe I read that you had pain hyperacusis but it has improved? How long did it take to improve? Did you do anything specifically to improve? (Just wanted to start this thread for anyone suffering pain hyperacusis/noxacusis to find some hope).

@Kirstystired I too am so very sorry to hear about your friend.

What an awesome idea!

I like the way you think! :beeranimation:

@Zugzug Not sure, but I thought I read you had noxacusis that went away. If, this is correct, how long did it take to go away? If I am mistaken, I am sorry for that. Just trying to find some hope for all of us who suffer from pain hyperacusis/noxacusis.

@Vassili How are you doing these days? Is it next month that you see your neurologist?

I have come across many success stories for tinnitus and some for hyperacusis but looking specifically for success stories from pain hyperacusis/noxacusis. Are there any out there?

@Juan You mentioned in one of the posts above that you had severe hyperacusis at one time. Was it pain hyperacusis? How long was it severe for you? How did you cope during that time? What did you do or what helped you? I am hoping your story can give me hope and help me.

I'm still experiencing nerve pain on the top/back of my head and either burning or stabbing pain in my ears and cannot get in to see a neurologist for at least 18 to 24 months. The nurse practitioner at my family doctor's office knows nothing about pain hyperacusis. She finally put me on...

@Juan Thank you for clarifying and the additional information. I think I am going to wait until the spring to visit to give my ears a chance to get stronger. (It's only been 5 months). I am dismayed. I read that that hyperacusis goes away within 12-24 months but it does not appear this is...

Can you clarify your comment above please. I have pain hyperacusis. My son and his family live 1 hour and 40 minutes away. Since the onset of tinnitus and hyperacusis I have not gone to visit them. Are you saying that anyone with hyperacusis should not be travelling on freeways at all? I...

@David Vance Hello David I too have pain hyperacusis and get burning pains in my head and like you I am also on Gabapentin and Trazodone. I just started the Gabapentin and was told that it will take some time before it may work as it takes time to build up in the body. Is it working for you...

@Vassili Are you still experiencing head pain? I am still experiencing pain (still sometimes burning) on the top and back of my head. And for some reason, some days my ears feel fine and other days they feel almost raw even though they haven't had loud sounds. Like you, my tinnitus ramps up...

@simb999pe Thank you for your post. I am dealing with tinnitus and pretty bad hyperacusis and your post gives me hope. I have bookmarked it to re-read when I need a lift. Thank you:)

@Jazzer Hi Dave I look forward to your posts. I am so sorry that you are on this forum (sorry that you have this affliction like the rest of us) but I'm glad you are on this forum... for the rest of us to look up to. The written word sometimes does not come across as it is meant. I mean...

I suffered a setback almost two months ago (bowl accidentally dropped on granite counter). I'm still getting burning ear and burning head pain daily... even in silence and still get aural fullness at times. I try not to protect from normal every day quieter sounds in the house (I do protect...

@HolyKnight94 You are very early in this. The best person to speak to on this forum is @Michael Leigh. He has numerous well written, informative articles for people who have acquired noise induced tinnitus and or hyperacusis. As I have put the @ before Michael's name, he will receive...

@xyz I've wondered this too (Inflammation) and feel that I should be cutting back on everyday noise. Your avatar mentions mild tinnitus in 2016. Then worsening of T and onset of worsening H in 2019. Do you know what caused your tinnitus to worsen and hyperacusis to start then worsen? Do...

@Contrast Thank you for replying. I'm sorry you are having other health issues. I read through some of your posts but couldn't find anything. I hope that whatever it is will improve for you. :huganimation:

@Contrast Do you still have trigeminal nerve issues or have you had improvement or has it gone away? I have a lot of pain and would be grateful to you for this information.

@xyz Silence is exactly what I crave but everything I've read says that will make it worse. I have no idea what I should be doing!

I thought it would be nice to have a place to go to when your spirits need a lift. Where every one could post something that helps them. So, what do you do to lift your spirits when you are down? I've come up with three things that really help me when I get down in the dumps or lose hope...