A Sound Incident While in Setback Has Me in Tears with Pain :(

[Street Spirit]

My ears are in horrific burning pain and there is nowhere to go and no one to see to help me. I feel like my strength is running quite low in my fight against this awful condition. I was up all.night in pain, this is horrendous. The trt lady won't see me yet. The ent has no clue. The only hope I have are drugs, time and protection. I don't believe all of us should carry on like normal people as it seems some of us are more susceptible to damage am I wrong? I was doing so well.
..
i thought it was almost gone.

 

[Magpie]

You shouldn't feel obligated to carry on like normal people(whatever that means), you should be yourself. I don't know why your ears are in "horrific burning pain" but I have experienced pain in my ears and it isn't pleasant but the pain is almost always temporary so you get through it. If you have an incident where you are assaulted by a loud sound and your tinnitus or hyperacusis spikes or becomes painfull it will almost always be temporary. It doesn't help if you become anxious or stressed and being that way always make everything seem worse.

 

[Street Spirit]

It means not wearing protection. I was already in a setback when this noise incident occurred. @Magpie do you h? It's a little hard not to become anxious when your ears hurt so.bad you cannot.sleep and they feel like they are on fire and every noise hurts them. I've had h for many mth now and felt almost normal, so this awful experience and massive setback has me pretty shaken up.

 

[lapidus]

What did you do to get better before this happened? And no, I don't think you should carry on like normal. You need a break from everyday life for the time being.

 

[Street Spirit]

Well i started to listen to music daily and slowly exposed myself more to offending sounds. My ldls seem to climb at a rapid rate and i almost felt normal. Things shifted when i started going outside daily, biking and walking.. I also got my hair done and was exposed to loud noise there..i think I just overdid it and put myself in setback. However this burning pain from last noise assualt is the worst! Of which I feel inclined to wear protection for the time being as it helps with the pain. But of course I don't want to fall victim to over protection either but clearly my ears need a rest. Hyperacusis is really hard to deal with. One moment all is going well and the next a complete landslide back into hell.

 

[lapidus]

Yeah I think you overdid it because you made much progress and fast. I don't think it's gonna make things worse if you wear protection for now, until things feel a little better and you're ready too start working with sounds again. To make yourself more sensetive by wearing protection, I think you have to do it for a longer time. I am trying to listen to one CD at whisper volume a day. But I'm also doing TRT. Have only done it for a couple of weeks so havent seen any improvements.

 

[rainman]

How did biking and walking set you back? I totally agree about anxiety, i remember my last pain lasted many months and i overprotected and basicly stretched the pain into one year. I try to listen to music now and then but i get fullness or little sensation so i stop for a few days. Its been 1,5 y since my last setback started, i dont think i will ever be in a normal state where i can listen to music again. Quite interesting as i can tolarate short 70-90 db sounds but wont last constant, even 65db, for half hour. The biggest anxiety starter is the thinking that what if for example the 10th set back wont get better, i'll have to isolate from my family....scares the hell out of me, i feel already so handicapped. Hardly can sustain any job etc.

I come to web, also in here to look for hope via the information i get. There is lots of hope and trials going on about T, is there any hope for H? Autifony Therapeutics have some kind of thing going on in phase 1, it reads that helps with hypersensitivity ion channels iirc. Is this the hope for H?

 

[Street Spirit]

Yea it's a slow process and sometimes frustrating. I really can't say why I made such quick progress aside from music. It was nice while it lasted..Once I feel better I will.try music again but I know I can't handle it right now. That's good you are doing trt

 

[Street Spirit]

My guess @rainman is the constant wind. I live in a very windy place. Also I was out alot too, shopping etc. I felt pretty good, no pain, sounds didn't bother me, basically almost normal. However after my hair appt I noticed a somewhat increase in ear thumping and some mild sensitivity and days later it was full on setback just odd how you can be doing so well and then back to a square one..i dont get it. Setbacks are hard and hard to not worry we will end up in total isolation..there isn't enough people with true h for much hope in a cure..all we have is hope.in trt if you're lucky enough to.find a good qualified clinician.

 

[lapidus]

But if it is as scientists believe , that T and H are just different sides of the same coin, then a treatment for T would probably be beneficial for H too. I really hope Autifony will be our answer.

 

[lapidus]

oh btw @Street Spirit

On The Hyperacusis Research facebook page somone posted this statement:

"I have been a hyperachusis suffer for over l5 years and just had outpatient surgery which has improved my sensitivity about 40 percent in the right ear. Going back to have the 2nd ear done whereby a piece of tissue from beneath your scalp skin is placed over the round and oval windows to reduce sound vibration. Either respond to me or contact Dr. Silverstein at www.earsinus.com. if you have any questions."

I have no idea how that would work though, it just sounds like you're putting on some sort of "organic ear protection"
Anyway, it's always something too look into maybe.

 

[Street Spirit]

Haha yea that^^ is kinda weird..first time I've heard of such a surgery. .

 

[lapidus]

Yeah me too. And maybe this was the first surgery of this sort to be done on a hyperacusis patient. Who knows? The thing is that this person got better, and it brings at least some hope.

 

[Magpie]

Well i started to listen to music daily and slowly exposed myself more to offending sounds. My ldls seem to climb at a rapid rate and i almost felt normal. Things shifted when i started going outside daily, biking and walking.. I also got my hair done and was exposed to loud noise there..i think I just overdid it and put myself in setback. However this burning pain from last noise assualt is the worst! Of which I feel inclined to wear protection for the time being as it helps with the pain. But of course I don't want to fall victim to over protection either but clearly my ears need a rest. Hyperacusis is really hard to deal with. One moment all is going well and the next a complete landslide back into hell.

It's a slow process and may take many months if not years. I still find certain sounds distressing and painful even after many years. Those tiny hair cells in the inner ear have taken a beating and in some cases will never recover. Others are very sensitive and it takes time for these to also recover. I really can't say anything other than the passing of time helped me. I tried pink noise, white noise, music and just protecting myself around harmful noise and music was the most tolerable if there were no violins, bagpipes, flutes etc... in the tracks. You misread my original post and all I was saying is that we should be ourselves. Anyway I'm sure you will get over your setback so good luck.

 

[Street Spirit]

Sorry @Magpie you are right, i misread your tone. My bad. I am unwell, feeling quite depressed at the.moment and scared. I realize it takes time, I just wish I understood it all a little better. To go from being so well to unwell is gut wrenching. I wish I had proper medical help.

 

[iAzra]

I see this topic now, are you better? What kind of noisy insult did you have? Why didn't you take steroids if being in acoustic trauma, do they prescribe such drugs for acoustic insults in Canada?

 

[Street Spirit]

It was through my phone speakers. The pain only lasted a couple days and I am slowly coming out of setback. To be honest I never thought about steroids. .my doc is more in the thinking that my H is depression induced.

 

[lapidus]

Hey @Street Spirit !
I contacted that doctor in Florida who are doing that surgery I mentioned in this thread earlier and asked about it. This is the reply:

"Thank you for inquiring about surgery for relief of severe hyperacusis. If your noise intolerance is severe and affecting your life, you may be a candidate for a minimally invasive outpatient procedure that I have developed and has worked on other patients. If you are interested, please give us your name and contact number so we may contact you after we receive Institutional review board approval to proceed with the procedure, which is in the works at present. We expect approval in the next several months to proceed. The risks of the surgery are minimal and takes about 30 minutes. Postoperatively there is little pain and we would require that you remain in the area and not fly for one week after witch the packing is removed and the ear tested for improvement in loudness tolerance.
Thanks again for your inquiry. We have been very encouraged about the results of the procedure and hope it will give relief to many who suffer with Hyperacusis.
Best wishes"

So it seem that this surgery is something completely new and he's apparently the only one doing it. Now you live in Canada so that may be too far away from you, but it's closer than for me at least. @demi you might also be interested in this information and you maybe live closer to Florida. This doctor also held a seminar about hyperacusis on a convention yesterday so at least he seems to know stuff about H.

 

[Street Spirit]

Thanks @lapidus I will try to track down woman as well and see how she is doing.

I am doing very poorly. The last couple days were very rough tts and pain wise and every sound started to hurt. Last night i took a percocet for the pain. It worked well but within an hour my h went full blown. EVERYTHING sounds loud. I can't speak or even swallow. Something is very wrong with me. Also t is up. I am actually sick to my stomach from the anxiety. I never had consistent "loud" h..only after wearing ear protection and it would fade quickly. It's like I now really have hyperacusis and I don't know what to do. I want to run and hide..not sure how to keep coping. I have a family that need me. Right now I feel scared out of my mind. Why do my ears get worse? I never over protected, I allowed sounds in daily, went outside for hours, have nature sounds always on...I can't even tolerate the TV now..nothing. I don't know if there is a way out of this.

 

[lapidus]

Hang in there @Street Spirit
It can and will get better for you. You have already proven that it's possible.

 

[lapidus]

@II Packy II
Maybe this will interest you as well, even though you don't know if you have H or not.

 

[iAzra]

I hope you will be better soon. Every time I'm worse I say to myself that if everything gets back to "normal" I would be more apprichetive and happy and not nag so much about it. Right now I am doing that again. It seams I have some increased sensibility for some psssttt sshhhh sounds and I'm hoping it is something temporary and if everything will be OK I will be living normal as much as I can. I really hope tomorrow would be better for you!

 

[dan]

Thanks @lapidus I will try to track down woman as well and see how she is doing.

I am doing very poorly. The last couple days were very rough tts and pain wise and every sound started to hurt. Last night i took a percocet for the pain. It worked well but within an hour my h went full blown. EVERYTHING sounds loud. I can't speak or even swallow. Something is very wrong with me. Also t is up. I am actually sick to my stomach from the anxiety. I never had consistent "loud" h..only after wearing ear protection and it would fade quickly. It's like I now really have hyperacusis and I don't know what to do. I want to run and hide..not sure how to keep coping. I have a family that need me. Right now I feel scared out of my mind. Why do my ears get worse? I never over protected, I allowed sounds in daily, went outside for hours, have nature sounds always on...I can't even tolerate the TV now..nothing. I don't know if there is a way out of this.

I mean no disrespect but didn't I try to warn you on about how to not end up like this a few months ago?
People just don't listen, its so frustrating. Now i'll probably get banned for saying this. If you feel this post offensive please ask for it removed.
I hope you feel better soon.

 

[Street Spirit]

@dan can you refresh my memory cause I don't remember your "warnings"???

Also, I am almost certain it was the percocet as morophine im hospital did same thing i suspect. My h returned to "normal" by the next day. H is hard to deal with but I have made excellent progress on my own though sadly I do have setbacks. Not going to give up though and I honestly don't remember your advice. Thanks for you well wishes

 

[demi]

@Street Spirit I am so happy you are still fighting the good fight and know that you are just in a setback. I am currently also in a setback, but I know it gets better. Setbacks will be normal during our return to "normal". WE CAN DO THIS!

 

[Street Spirit]

Yes, we can!! Just have to keep working at it!

 

[dan]

@Street Spirit , refresh your memory in this thread:
https://www.tinnitustalk.com/threads/im-a-mess.3836/#post-35894

Unfortunately certain people give dangerously bad advice and then disappear... until they do it to somebody else all over again. I hope you can learn from your mistakes Lynn and that its not too late to correct them.
I wish you recovery from all my heart.

 

[dan]

p.s. I am also Canadian.

 

[Street Spirit]

Oh yes that's right. Well I think I have done the best I can on my own in this. I don't know 100% what the answer is Dan. Of course I would like to believe that sound exposure is good for hyperacusics however realize there are limits. i know for certain fear does make me worse. I know the silence in the beginning made me more sensitive but I also know now that a healthy dose of quiet is important every day FOR ME. I have a family, so I am exposed to noise daily. They do their best to be careful but let's face it, no one is as careful as the hyperacusic themselves and even I drop crap on the floor etc.every once in awhile. Yes I try to push boundaries at times and will get away with it or not..my setbacks, well I can't always attribute to noise. Maybe stress at times?? Or else overdoing it. In fact only twice so far could be from noise. My ear pain comes and goes, however I also have tmj which does make my ears hurt. Hard to always know which is which. For instance today when moving my jaw I have ear pain, so that means tmj today.

Anyways I do appreciate where you are coming from. I also understand it. I know not everyone gets better. I know for some trt made them worse. In other words my eyes are wide open. I do what is best for me but my ears pretty much suck now. They are super sensitive so it seems I am always trying to climb my way out of setback. I am also a very active person. Sitting at home and doing nothing is just not living to me. Its very difficult. This is when I will say screw it
And hop on my bike or go for walk or do gardening. I wear plugs on bike rides because of wind. I wear cotton in my yard and sometimes plugs when it's noisy. However wearing them does make me worse. It's tough.

Anyways I'm kind of rambling now. I know i
Have to keep working at it and hope I am one of the lucky ones. I have improved with music, exposure, losing fear etc..but I have to learn to take it slow. I am also grieving my old life. Last summer I was riding my motorcycle and attending concerts and amusement parks, beaches, my trailer spot and most importantly spending time with friends and loved ones. Now one visit at my mother house who talks very loud caused me a mild setback. I havent even attempted friends. Everything else gone for now.Life is tough, but I am adapting and slowly accepting.

 

[dan]

However wearing them does make me worse. It's tough.
I think you are very mistaken. Wearing earplugs in NOISY situations cannot possibly make your hyperacusis worse.

Yes I try to push boundaries at times and will get away with it or not..my setbacks
Do NOT push boundaries. When you break a leg, do you push your boundaries by walking on it while it mends? The point is to take all the load off of it for a length of time.