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

[bill 112]

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?

A good question Rainman involving the hyperactive ion channels.As Lapidus pointed out its been long believed that T and H are two sides of the same nut,some people with H later develop T or people with T later develop H.Its beleived that if you crack the nut youll crack them both so we can only hope for the best.Interestingly I recently done an experiment with my audiologist regarding the the nature of the two and this is what I discovered,with my H at least I get terrible headaches and things sound way louder than they once did,so we were sitting in a sound proof room and he asked me to describe my T and I did as a hissing sound,then we sat silently for a few minutes the idea that he would make a sudden sound and I would describe what happened and the results were quite interesting,suddenly he banged a piece of metal off his chair and I felt this surge of like electricity through my brain this powerful surge made my head feel like it was about to explode from the pressure.We waited a few moments and until the pressure died off and he asked me to describe what I was hearing now,which freakishly was this strange electrical current going through my head after a loud noise.It was incredibley strange and it proves to me atleast that the two are most certainly connected and it all involves extreme overactivity in the auditory brain,the brain reacted so strong to the stimulous that it sent out like an electrical surge through my brain,I can physically feel the sound going through my brain and it is the weirdest feeling and nearly impossible to describe.Now in Autifonys literature they describe H as being one of the conditions that Aut00063 is targeted for although they dont call it H but a hyperextiability syndrome in the auditory brain.Now the only way hyperactivity can occur in the auditory brain is through increased electrical activity or disrupted electrical activity which occurs through potassium gated ion channels the very channels that Autifony are working on.Now between the electrical surge through my brain and the electrical current noise that follows after I truely believe that these ion channels are at fault and Autifony should have a huge impact on this if successful.

 

[dan]

my work is done!

 

[Street Spirit]

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.

When I take plugs out my ears are more sensitive. I don't go into loud places very often. However when I do I wear them. Pushing boundaries as in, living, exposing myself to a little more sounds at a time. Without doing that how would I know I making progress. I am not looking to debate with you Dan and I'm sure you mean well but I don't have the option of living a life of complete solitude. I also believe in trt. Too many people have benefitted from it.even those with ear pain.

 

[Street Spirit]

I never said I didn't wear plugs in noisy situations. I do, always. In fact some here would say I over protect...As I recently started wearing them Outside while gardening because it can get pretty noisy around my house.

 

[dan]

As I recently started wearing them Outside while gardening because it can get pretty noisy around my house.
Should of done that from the beginning.
Look I also don't want to get into a debate with you, since you don't listen.
What can I say, sometimes what WE want isn't what's best for us.
But go ahead and believe in what you want, just don't be so surprised if things might get worse-but I really hope I am wrong.
All the best.

 

[bill 112]

As I recently started wearing them Outside while gardening because it can get pretty noisy around my house.
Should of done that from the beginning.
Look I also don't want to get into a debate with you, since you don't listen.
What can I say, sometimes what WE want isn't what's best for us.
But go ahead and believe in what you want, just don't be so surprised if things might get worse-but I really hope I am wrong.
All the best.

Do you have H Dan?Im not sure if you do or not but theres no need to go off on Lynn,I for one dont use earplugs now unless there is a noisy situation present but I try to live as normally as I can and build a tolerance to sound by exposing myself to traffic noise and such.If I was to wear earplugs all the time I wouldnt be able to tolerate any sound and im glad I didnt overuse them after my stupid noise exposure at the start of the year or I wouldnt have made any progress at all and would just be curled up doing nothing.Unfortunately I dont have much of a life now just work and come home seems to be as good as it gets for me now and im only 22.What kind of life is this for a 22 year old?All my friends are partying,enjoying college,having kids and starting a family,following their dreams and travelling the world and what am I doing,nothing all of my dreams and goals were whisked away from me in a heartbeat,except for one,being cured of this condition.The last 3 years I tried to keep up with everyone and make a good life for myself just to have 3 years of progress smashed in an instant.I wish I was cured every second of every day and I wont rest until I achieve that goal,after all its the only thing I look forward to in life.Were all frusrated here than Dan buddy and I dont believe your angry with Lynn out of anger but more frustration at our own situation,but keep the chin up,god be good we will have our day.Best wishes Bill.

 

[dan]

I'm not angry at anybody. Why would I be angry at a stranger with hyperacusis, when I already have recovered from severe H and I want to help others. My problem is tinnitus anyways. What I am frustrated is when people cause themselves needless harm. If I had an audiology degree, would you still think I was talking out of frustration?
But if you think my strategy is not worth anything I wont bother explaining it anymore.

 

[dan]

I wish to apologize if I sounded heated up. Just want the best for all and want this cured.

 

[bill 112]

"BUT IF YOU THINK MY STRATEGY IS NOT WORTH ANYTHING I WONT BOTHER EXPLAINING IT ANYMORE"
Dan I never stated that your strategy was worthless and of no use and I would never state such a thing as I have a high amount of respect for you.If my comment was demeaning to you I apologise.
"IF I HAD AN AUDIOLOGY DEGREE,WOULD YOU STILL THINK I WAS TALKING OUT OF FRUSTRATION?"
Audiology degree or no degree it doesnt make a difference,you sounded frustrated with Lynn as she wasnt following your advice.If a doctor with 20 degrees tells a patient with a broken ankle not to walk on it and he walks on it anyway,the doctor is going to be pretty frustrated with the patient for not following his advice when he turns up complaining his ankle is still sore.

 

[lapidus]

I'm not angry at anybody. Why would I be angry at a stranger with hyperacusis, when I already have recovered from severe H and I want to help others. My problem is tinnitus anyways. What I am frustrated is when people cause themselves needless harm. If I had an audiology degree, would you still think I was talking out of frustration?
But if you think my strategy is not worth anything I wont bother explaining it anymore.

How did you recover Dan? And how severe was it?

 

[dan]

It was severe in the sense that I had daily ear burning sensations, sharp knife pains and everything seemed x2 as loud.
I protected my ears from all painful noise. One day you will notice that things bother you less and less.
That's it in a nutshell.
Bottom line is if your strategy is working, keep doing it, if it doesn't, change it.

 

[Street Spirit]

From the beginning? It is the beginning. I JUST started going outside to do gardeninhg with the nice weather and I live behind a hardware store and beside a sometimes noisy neighbor. I also live off a very busy highway with loud trucks and motorbikes. So naturally I will protect myself. I'm not an idiot.

You keep warning me but have failed to even say what your strategy was to get better. Also keep in mind we all have h for different reasons.

 

[Street Spirit]

As I recently started wearing them Outside while gardening because it can get pretty noisy around my house.
Should of done that from the beginning.
Look I also don't want to get into a debate with you, since you don't listen.
What can I say, sometimes what WE want isn't what's best for us.
But go ahead and believe in what you want, just don't be so surprised if things might get worse-but I really hope I am wrong.
All the best.

I dont listen? I seem to listen well enough to continue to respond to someone who has insulted me from the beginning and why I don't know. You have not said what to do..wear plugs all the time Dan? Stay inside away from family DAN? ?? What??? Why don't know you explain yourself a little more clearly and I will attempt to "listen"

Btw, has your t always been loud? Cause wearing plugs makes mine temporarily louder. Also, just because what you did worked for you doesn't mean it will work for me. Your could of just been the type that goes with time, like the majority of people with h. You are not an expert on the matter. I see more people IMPROVING with trt and those who protect 24/7 are living lives of hell because they cannot handle noises at all. Even WITH their protection ON. You are taking little snippets of my post and insulting me. You don't see the whole picture and I have worked hard at looking for a balance while taking care of my kids. Do you have kids Dan?! You insult then apologize. Doesn't make it right. Clearly you have an agenda, your mood is set to "murderous" and you are taking it out on me.

 

[Street Spirit]

I haven't been able to do trt. I have had to muddle through this on my own and with
The very generous help of kind strangers. I have read pretty much all the archives at h network, visited other h websites (some scary) saw an audiologis, and talk to people who have improved on a daily basis. None of those people over protect. My problem like many others involves learning balance of this hideous thing. Awhile ago I felt almost normal. Why would I think to start wearing plugs then when not wearing them got me to feeling almost normal? ? My problem is I guess (and I use that term loosely as this is all guesswork) I overdid it and I really see that now. I should of taken exposure more slowly, but I didn't know. I thought I was well, even told doc at last appointment my ears were almost better, no issue. So I had no reason to fear nor think that continued exposure to life/noises would of put me into a setback. However I also think stress plays a big role in setbacks too and I have an uunderlying medical condition that may be responsible for my h and t. I did not get mine from a noise trauma.

 

[lapidus]

Hi @Street Spirit !

I asked that doctor i Florida if that procedure would be spread to other places as well. He replied:

"Yes, we are hoping that the procedure will be widespread and available soon. It is not a difficult procedure to do for an ENT physician, and we hope after publishing our experience and results, that more people will benefit from it.
Best wishes."

Did you manage to get in contact with the woman who had the procedure?

Also, I'm in a terrible state today. My right ear is in extreme pain. Been to two doctor appointments. They talk too loud and I also did a tympanometry test. The clinician lied to me and said that there would be no sound involved. Well there was sound alright. 80-90 db for some seconds I figured out when I got home and read about it. Talk about breaking the hippocratic oath.

Whish you the best Lynnie!

 

[Street Spirit]

Oh no @lapidus why would they lie to you?! That is awful.

I did message that woman but have not heard back.Maybe she doesn't use Facebook much. Very interesting though. She did comment a couple times in my group and say she was doing better, even hosted a gathering of 25 people in her home and did really well.

I hope you feel better soon.That really does make me angry to see someone treated so carelessly and without compassion towards your ailment.

do you have something you can take for the pain? Hang in there!

 

[lapidus]

Oh no @lapidus why would they lie to you?! That is awful.

I did message that woman but have not heard back.Maybe she doesn't use Facebook much. Very interesting though. She did comment a couple times in my group and say she was doing better, even hosted a gathering of 25 people in her home and did really well.

I hope you feel better soon.That really does make me angry to see someone treated so carelessly and without compassion towards your ailment.

do you have something you can take for the pain? Hang in there!

Yes, I am quite chocked that she told me that there would be no sound, just pressure. At first there was a low sound, I pulled the thing out of my ear and said that i don't want any sound. She replied that the sound wasnt gonna get any louder than that, which was exactly what it did. I only did one ear since it caused so much pain. The test didnt show anything abnormal so it was pointless anyway. I don't want to take any form of medication, including painkillers since everything seems to be ototoxic and I just don't wanna take any chances. Besides, I don't know if it would make any difference since what I am experiencing isnt really normal pain. I can't explain the pain really. My ear just feel broken.

Well, it sounds like good news that she is making such statements. When people who arent on your contact list on facebook sends a message they sometimes end up in the junkmail inbox. Maybe your messages has end up there so she doesnt notice them.

 

[Street Spirit]

Good point. I will tag her in group. Once again I'm sorry. That really sucks. I've taken benzo (clonazepam) and it did help with pain. I also took percocet and while it took my pain I did end up with bad (loud) h for the evening. Can't say for sure it was that though. Sometimes my ear just feels "open" and sore...If that's what you mean. .

Maybe try magnesium and a heating pad..and lots of quiet rest. Feel better

 

[iAzra]

Actually @dan , with all the respect, you're wrong. When bone is broken best think for the bone is to keep using it. Every animal does so. And you know what, the bone is never as strong as before. It is even stronger! Western medicine teach us stuff which do not necessarily correspondent with the nature and human nature. But one think you can use from this medicine is some antidepressants because reading you I feel depressed and I can only imagine how YOU feel. Meaning no offense. Al the best!

 

[SueR]

@Street Spirit how's the TRT going?

 

[lapidus]

@Street Spirit @demi
Here's an update on that procedure invented by Dr. Silverstein in Florida:
http://www.earsinus.com/inventions-and-procedures-developed-by-herbert-silverstein-m-d/

It also contains testimonials from that woman who reported about this on Facebook. Hope this procedure will be widespread so we who don't live in Florida maybe can get the procedure.

 

[Ken219]

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.

'we may contact you after we receive Institutional review board approval ' Not familiar with terms. Does this mean it is in testing? Does insurance coverage this?

 

[lapidus]

'we may contact you after we receive Institutional review board approval ' Not familiar with terms. Does this mean it is in testing? Does insurance coverage this?

After my mail correspondence with Dr. Silverstein he said that this procedure will be approved and thereafter widespread. He has been doing the procedure a couple of times I guess, since he invented it. But I guess it have to be approved by some kind of board before other hospitals start to do it. I don't know if insurance would cover it, I'm not american. You could always contact Dr. Silverstein. Do you have hyperacusis Ken?

 

[Ken219]

After my mail correspondence with Dr. Silverstein he said that this procedure will be approved and thereafter widespread. He has been doing the procedure a couple of times I guess, since he invented it. But I guess it have to be approved by some kind of board before other hospitals start to do it. I don't know if insurance would cover it, I'm not american. You could always contact Dr. Silverstein. Do you have hyperacusis Ken?

@lapidus I have severe T. I thought it would be a good question to ask on the board. One never knows when.....