First Major Setback Since Onset Almost a Year Ago

I just have to write this down because I wouldn't know what I'd do otherwise. Almost a year into T and H, and things got worse over the weekend. My first real setback, and now I'm feeling the effects.

I was walking past a stack of speakers at the mall when they suddenly blasted loud music. I didn't have earplugs on because I know that area of the mall is normally quiet. Just sucks that the speakers came on. But worse was that I froze in place, like a deer caught in headlights. I got exposed for I dunno, 20 to 30 seconds before survival instinct took over.

I've been in horrible pain in the last couple of days. Stabbing, burning ear pain plus cold and warm itchy sensations. I can't get a prescription of prednisone.

I don't know what to do anymore. I feel so defeated and broken and tired. I don't want to give up, I want to fight. But the firmer my resolve gets, the harder things become for me.

 

Why no steroidal medication? Can you not access an urgent prescription from an ENT? What about the ER at your local Eye and Ear Hospital? If you feel you've suffered some damage, it really is an emergency situation.

 

Dear Lex:

I absolutely totally sympathise with what happened to you. Unless one stays at home, one can't avoid unpredictable situations. I have had this 21 years and all sorts of stuff has happenned. I had a lawnmower go off right next to me a few weeks back, and I already was having a bad day. You just have to let it heal, and that can take time.

We are with you and understand, if that can help.

Marco

 

@Fabrikat Hard to get a prescription when the ENTs I went to don't even know what hyperacusis is.

@Marc22, thanks! I read your recent update, about how things got better since your January setback. I'm letting time and carefulness do the healing.

 

Those episodes are unavoidable, they are unpredictable situations than happen. Maybe you can get and try deflazacort. It is a powerful steroid anti-inflammatory, and the dose has to be adjusted to your weight. For a noise incident like this ENTs usually prescribe a high dose, for like 5-7 days. It is a strong medication and has to be administered and taken with care.

 

Go to emergency at any hospital and tell them you had a noise trauma. They will give you some kind of corticoid, in pills or injection. In theory, the sooner you start treatment, the better chances you have to avoid permanent damage or try to reduce the damage

 

Occurrences like this are what I find so strange about the TRT advice to stop using hearing protection in "normal" sound environments. It's not uncommon for a normal sound environment to turn into an abnormal one in an instant. Sudden sirens, mufflers, loud motorbikes, fireworks or firecrackers set off in someone's yard as you walk past, fire alarms. The list is exhaustive.

Please take care @Lex, chances are things will get better again for you.

 

Dear Sen:

Only when my h. is bad do I put on protection outside my home. If my h. is light, I don't need protection because sudden sounds will not affect me long, even the very loud like lawnmowers, alarms. Of course I move away fast from them. These days I always have muffs on outside because I am not back to "normal" even if better.

What helps me temporarily with bad h. is clonazepam. Seeing a real even if temporary improvement always gives me hope.

To all: I am worse today for reasons I cannot fathom. Woke up like that even if I slept during the night. I have been waking up OK for a while, unlike every day when I was at my worst. I started everyday day a bad, and so down that I would drink a beer to forget...at 8 am! No beers or pills these days for the most part. Hope this is a little setback within my general good recovery. I don't know. As I said in my own thread, my condition is generally much better but fragile.

True ,I went to bed at 6PM, maybe someone mowed their lawn near me during the early evening, which does happen, but it was not loud enough to wake me. Sigh... so many unknowns with h..! After such a great day yesterday. It can be so discouraging!

Marco

 

HI hear you @Sen and can't help thinking your words are aimed at me..lol You make a valid point. However, I'm still not a believer in using earplugs around normal everyday sounds. @Lex Sorry to hear about your situation and hopefully the discomfort will pass. Carry on using gentle sound enrichment if possible. To help with stress that tinnitus and hyperacusis cause try St John's Wort. It can be helpful and won't increase your tinnitus. I still believe in your hyperacusis will improve.

All the best
Michael

 

Here is a passage reproduced from a post on Lex's new thread, about overprotection:

I have had h. 21 years and I have never heard people say not to overprotect against REALLY LOUD SOUNDS, except for idiotic extremists like some at the Hyperacusis Network site. You don't overprotect against every day LOW sounds like at home or in a library or on a quiet street. An example, I put on ear plugs today to avoid the annoying sound that my DVD player makes with some DVDs. It was annoying because I am having a bad day. After taking the plugs out, my ears were worse. Should not have done that. But I will put on my muffs outside today to minimise all the truck sounds, lawnmowers etc... on my way home on my bike. When my ears were really good I never put muffs on outside because even all those trucks and lawnmowers could not hurt me as long as I fled pass them fast.

Marco

 

It's hard to anticipate when a loud sound can occur. In those instances I'm always reminded that life has no checkpoint saves. Too bad right? . If only tho haha. Best of luck in getting better. I believe it will

 

I was walking down a quiet street once and someone revved their racing bike in their driveway over and over for no reason about 6 feet away from me as I was walking past. It was mindbogglingly loud. Thankfully I was wearing protection, but it still hurt and it still caused a setback. What if I hadn't been wearing protection?

When I go for walks now I avoid protection as much as I can, but what if this were to happen again?

I've also been out walking and kids have set off fireworks very close to me. What if I were not wearing protection then?

It really is only a matter of time before it happens while I'm not wearing protection. These occurrences are not rare.

 

LIE. Tell them something to get it. And take high-dose strong antioxidants. Acoustic trauma causes damage via free radicals.

 

Got my prednisone after much lying and acting, hope it's not too late. And also the hospital noise added another layer to the pain. I just want to curl myself into a ball and never wake up.

How long do you guys think I have to hold out for a passable treatment, even just management of delayed and lingering pain? Five years? Do you think it's worth hanging around for five years of this? Because right now, I seriously don't want to live anymore but I want to find reasons to stay.

 

Wait at least two years after your secondary acoustic trauma (until summer 2019). You might improve spontaneously. After two years your chances of improvement in the following two years might be a lot lower than they are now.

You might also try rTMS before deciding that there is nothing more you can do.

I wear ear protection whenever I am outside of my home, and every single time something loud happens to make me feel good about wearing ear protection.

 

Lex:

More specifically, how bad is your h.? Does water out of a faucet bother you just a little or a lot? How loud do other people's voices sound? Does the ruffling of paper bother you a lot or a little? Knowing that ,I might be able to tell you how long it MIGHT take for you to recover to a more tolerable level, based on my 21 years experience.

Also, I have found that taking 2mg. of a tranquiliser called clonazepam helps my h. temporarily when it is really bad.Experiencing that gives me much needed hope that I can get better. NOTE: the tranquiliser IMPROVES the h. temporarily; it does NOT anesthesise a person like alcool would do ,so that they feel less what is already there , like a drunk who would feel a cut much less.

Marco

 

IMO 5 years is realistic, at least for a hearing loss treatment but it might help H and T.

There are also several companies working on hidden hearing loss and H, some of them who might start a trial in the next five years.

 

@Lex

Prednisone is used when cochlear damage is suspected. As far as I know, there is no serious evidence that it helps in reducing the damage. As any drug, it could have unwanted side effects.

Cochlear damage happens in very extreme scenarios. There are tables that represent the risk of damage based on the combination of sound pressure (measured in decibels) and time of exposure. These tables are different from one another, and also people’s cochleas are different, so there is not too much objectivity about that. But, for example, according to these tables, 90db must be heard for 4 hours or so before it could damage the cochlea. 100db for 15 minutes. In 30 seconds you should have heard an extremely loud noise, like 120db or so, to have the possibility to damage your cochlear cells. If the music from those speakers measures 120db, all the clients of the mall would be deaf.

How strong could a mall speaker be, if you are close to it? 80db, 90db? If you have distorted/increased loudness perception, that doesn’t invalidate the objective conditions needed for cochlear damage to occur (certain level of sound pressure for certain amount of time).

Your setback was probably produced because your tensor tympanis and/or the zone around them got too tensed or irritated. That is why you feel pain. You pushed too much. Also, if you reacted very negatively to the experience, as in a trauma, this could reinforce the physical aspect of the problem. It’s a psycho-physiological problem.

Your “hyperacusis” and your setback have nothing to do with cochlear damage.

All the best.

 

Hi lex, I hope you're feeling better. Hang in there.

 

@Marc22 My sensitivity is the same, the pain isn't. For example, voices are the same volume to me, not louder. Car honks are still annoying. The sound of crumpling plastic still grates my ears. That's what I've dealt with in the last year, and that's what I'm dealing with now.

But I notice that there is a considerable increase in pain in silence, almost as if my ears are experiencing delayed pain after a noise exposure. Even in silence, my earlobes feel like they're burning, and there's a deep stabbing pain or a deep itch inside my ears.

@Yashin, yeah I get those tight pain inside my ear which I think may be TTTS, but what causes the hot/cold/itchy/prickly sensations on my earlobes and outer ear? Are those caused by nerves?

 

Sometimes one has to pull out all the stops @Lex in order to get what they want and I agree with you.
Hope the meds work.
All the best
Michael

 

Not so sure about that to be honest, this is only for healthy ears. Once your cochlea has been damage it get much more vulnerable. Some people with T and H get permanent increase of T, permanent or temporary hearing loss from lower durations.

Plus it has been shown that damage to the cochlea happens at lower volume and shorter duration, but the damage are not to the hair cells but to the synapses, which may be responsible for T and H.

So yeah if you have T don't stay in a 100db area even for less than 15 minutes

 

Dear Lex:

If the sound of crumpling plastic grates your ears AND is not unbearable, then there is a good chance your h. will recover slowly to a more tolerable level if you are careful. Unless that is your base level, and you were even worse before. But even then I have heard of very bad cases recovering (see the book "Tortured by Sound" , and some people at the Hyperacusis Network). Although such cases are more difficult.

As far as ear pain, that has always been a mystery to me. Sometimes I have bad h. with ear pain, and sometimes bad h. without. I have no idea why the difference. Sometimes also sounds inside my mouth really bother me, and sometimes not, even if outward sound is tough on a certain day. WHAT I DO KNOW FOR SURE is that if h. overall improves, any associated pain also dimishes, at least in my case. So , my own personal opinion (and it is only my own based on my personal experience) is that your prognosis is good. And I am NOT lying to try to make you feel good artificially.

You may also wish to check the opinions of the people with h. at he Hyperacusis Network. but do NOT mention suicide there, because it is against their stupid rules. They will ban you in a flash. The guy who runs the site can be a "Christian" jerk ( suicide is a sin !), even if he has a good side in having founded that site that has helped a lot of people out including me.

Personally I am feeling better today, after two really bad days.

Take care.

Marco

We are all rooting for you.

 

Have you ever had dental work post-H @Marc22 ?

 

Dear Sen:

To answer your question about dental work, I have to separate my 21 years of h. into 2 parts. During the first 10 years I had a light case, which did not mean that I could be complacent. I could do a lot more than I can these days. During that time, I am pretty sure I had some cavities done with a regular strident drill, because my ears could take it. After a major setback after 10 years, part of which was permanent ,I still had a moderate case, but I could do much less. One thing that I absolutely would never do in that more disabled state was to expose my ears to any dental drill. Luckily in the last 10 years I have had no cavities, or any other condition requiring drills. I suppose because of good dental hygiene and luck. If it should arise that I get a painful cavity, I would refuse any drilling, and have the tooth pulled out. I would not take the chance of getting worse, because of a drill right near my ears.

A few years ago, I researched into quiet laser drills, and quieter regular drills. I have to do that again to see if any technical improvemnets have taken place so as to perhaps save any future tooth or correct whatever dentail ailment. Also, I am treated by an itinerant dentist who comes to my home with basic equipment, but he cannot do everything that may be required, just the basics. I could go to a regular dentist around here for routine stuff but it is such a hassle to get them to turn off all the unnecessary office noises . Luckily all noises can be turned off without affecting the dental work. Like , cleaning can be done manually for example.But, as I said it is a hassle with the personnel because they are so used to those sounds.

Hope that helps.

Marco

 

Hope your feeling better lex

 

Eventually, the pieces of yourself will start to reattach. Once that happends, foster a bit of paranoia. I never go outside without foam earplugs. Inserting them deep enough to get full protection make my inner ear hurt, but I always make sure they at least enter (which offers five decibels protection at a minimum, maybe as much as ten.)

My T has grown worse regardless because I've been hit by sirens and fireworks. Accordingly, I no longer walk around in large citites without foam earplugs AND earmuffs. In a months time, I'll recieve tailor-made earplugs that I intend to carry everywhere outside my home. My second couple; the first one had a poor fitting and didn't feel very effective.

The bottom line is that you'll suffer loud noices and setbacks even if you go to lengths to avoid it. Carrying at least some protection will make you feel a bit better.

You're inside a room with one door only. Eventually, you'll have to leave through it. On the other side, there will be another kind of room. Probably. You won't be able to return to exacly the same room where you are now. Ever. So you can just as well stay as long as you're allowed, even if things are getting crazy painfull.

"TRT advice" is disguised propaganda invented by the same demons who created T. If you think such recommendations appear dangerous, the reason is that they actually are.

 

Wait, what? Was this a typo?

Pawel Jastreboff and Jonathan Hazell didn't create tinnitus. C'mon now.

 

Dear Sen;

You're welcome.

Marco

 

Yeah, that's... what?