First Major Setback Since Onset Almost a Year Ago

[Lex]

Still in a bad place. Still very painful. The pain now is there almost 24/7, even in silence. It's burning, stabbing, tingling.

Will update and respond to one by one to everybody who offered support when I feel a bit better. Right now, my energy is zapped, along with my hope to get better and my will to live.

 

[lymebite]

Something to consider trying for pain is Palmitoylethanolamide.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

 

[Lex]

Something to consider trying for pain is Palmitoylethanolamide.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/

Thanks, will check that out. By the way, now that they have identified nociceptors in the inner ear, do you think a painkiller will be coming soon in five years or so?

I'm grasping at straws I know, but right now I need something to hold on to.

 

[lymebite]

do you think a painkiller will be coming soon in five years or so?

I don't know. It would be nice if so! Though from the posts about them on TTalk, it sounds like the bio-techs in Boston - Frequency Tx and Decibel Tx - may have actual cures in five years, so would not even need a good painkiller.

The reasons to check out the Palmitoylethanolamide include:

1. It is not a pharmaceutical, it is a supplement found in food
2. Supposedly no side effects
3. Supposedly can be more effective for pain than even opioids

The link to the PubMed article has some of this and easy to find plenty more info with google.

In the United States it can be obtained without a prescription by mail order (I found some on Amazon), I think the same is true for most European countries. I don't know about the rest of the world.

 

[Bill Bauer]

It's burning, stabbing, tingling.

What you are describing is not T. If I were you, I would keep trying to see various specialists about it. I think there is a good chance that they would be able to do something about this condition.

 

[Lex]

What you are describing is not T.

I don't have issues with my T. It's the H that's causing this.

 

[Bill Bauer]

I don't have issues with my T. It's the H that's causing this.

I've never read any posts here where people described burning pain associated with H. In any case, are you sure that doctors can't do anything about H (just like they can't do anything about T)?

 

[Lex]

I've never read any posts here where people described burning pain associated with H.

It's quite common, especially in the hyperacusis-centric support groups/forums.

I can ask a prescription for nerve pain but the success rate for that is low.

 

[Bill Bauer]

I can ask a prescription for nerve pain but the success rate for that is low.

Try all possible treatments...

 

[Sen]

I've never read any posts here where people described burning pain associated with H.

That's really surprising. Burning pain is quite often comorbid with H. Search "burning pain" on the H network to see what I mean.

 

[Vicki14]

Though from the posts about them on TTalk, it sounds like the bio-techs in Boston - Frequency Tx and Decibel Tx - may have actual cures in five years, so would not even need a good painkiller.

Oh my goodness! Now, how many tortured souls would be free should that be the case!! I hope we find a cure for this hideous condition in our life time! @lymebite

 

[Alue]

It's quite common, especially in the hyperacusis-centric support groups/forums.

I can ask a prescription for nerve pain but the success rate for that is low.

Have you ever tried gabapentin? It can temporarily lower tinnitus in some and it's used for nerve pain.

 

[Marc22]

Lex:

I am so sorry to hear that you are still in a bad place.

I have never heard of a case like yours that has very bad ear pain but not an extreme case of hyperacusis (if I understand you correctly). I do not know what to suggest. What is causing your ear pain?! I am thinking about it a lot. I saw an article on ear pain in general, and there is a whole bunch of other conditions that can cause it, but you do not seem to have those.

As far as myself, I had ear pain on and off yesterday. Some strident noise outside for 10 seconds made my ears worse with associated pain. But after an hour the pain would go away. At night, I spent too much time on this computer keyboard and , even with ear muffs, I suddenly was plunged into severe h with ear pain, AFTER I took them off (why? don't now!). All sorts of weird stuff happens.Anyways, I get home in a panic, I gobble 2 mg of clonazepam, and I got way better really fast, much faster than usual. So, often I do not know what the hell is going on even after 21 years with h..

I am pretty good today, but who knows tomorrow?

Marco

 

[Zenyatta]

I've never read any posts here where people described burning pain associated with H. In any case, are you sure that doctors can't do anything about H (just like they can't do anything about T)?

Oh yeah, it does that. Mine feels like I have a sunburn inside my ears.

@Lex I'm sorry you have to deal with this. Wish I could say something to make you feel better but the best we can do is a hug emote. Hang in there, for now.

 

[Lex]

I'm feeling 50% better. I didn't want to post here because I'm scared of jinxing it (knock on wood), but I feel like I owe it to scared sufferers to let them know how I am. Heaven knows I always think of the worst when an active member suddenly stops posting immediately after hitting rock bottom. Also, I received a few messages from members asking how I am.

And for the sake of nostalgia, today, August 1, is the sad anniversary of my hyperacusis.

I took a total of two weeks off from work to rest my ears. I wear earplugs almost 24/7 now, even at home or the office which I didn't use to do. I also wear earmuffs and earplugs when walking on the street. I bought a pair of Howard Leight Impact Sport because it's slim and also has built-in headphones. I don't listen to music when I use it, but I still hook it up to my smartphone so that I look like I'm just chilling with my jam. Yes I still have personal issues with wearing eamuffs in everyday life. I know I shouldn't care when people stare but I haven't reached the zero-fucks-given level yet. Hopefully I can lessen the use of ear protection in time but that's not an option now.

I'm also back on Lyrica (50 mg 2x a day) to remove the edge of the pain.

I haven't listened to music or watched any videos with sound since my setback. I noticed that artificial sounds cause me the most pain.

I really wish I would get back to baseline soon because delayed, lingering burning and stabbing pain sucks. But since I managed to improve, I'm trying to keep my hopes up.

 

[Michael Leigh]

Still in a bad place. Still very painful. The pain now is there almost 24/7, even in silence. It's burning, stabbing, tingling.

Will update and respond to one by one to everybody who offered support when I feel a bit better. Right now, my energy is zapped, along with my hope to get better and my will to live.

Nice to see you back @Lex I did wonder what had happened to you. Sorry to hear of your discomfort and hope you're back to full strenght soon.
All the best
Michael

 

[Marc22]

Lex:

Glad to hear you are feeling better! Most people do improve if they are careful.

You mention"artificial sounds" cause you the most pain. By this , do you mean like sounds coming off a phone, tinny cheap speakers etc.. If so, I am the same. Those sounds are the WORST for me! Worse than trucks for instance. My current setback was caused by listening to music from a movie off my cheap TV speakers for 3 minutes! I knew those sounds were bad, but 2-3 minutes was usually OK. But this last time for some reason, I was plunged into my worst setback in 21 years. Although I am better now after 7 months, I still am not back to my previous level, and don`t know if I will ever get back to it. All this because of 3 minutes listening to TV!!

I could just scream!!!

Marco

 

[PaulBe]

I've never read any posts here where people described burning pain associated with H.

I've seen that description. I never had it but others have described it, often as being part of a cluster of symptoms.

 

[Lex]

TRIGGER WARNING

(Don't read if you want to feel encouragement and hope)
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Although I improved, I'm just very tired of this whole thing. I feel hopeless, scared, anxious, terrified, angry, and overall exhausted. I feel like I'm living in a minefield. I cry several times a day. I barely eat because I lost my appetite. Taking a shower and getting dressed are huge chores. I can't talk for long, can't laugh, because both hurt.

So talking to a therapist is out, though I plan to get my hands on some anti-depressants. But really, those will act nothing more than a band-aid. My issue is lingering pain in reaction to even supposedly harmless sounds.

How do people who are in the same situation go on? I can't do this for longer. Six months max and I'm out of here. This is not living. I don't intend to suffer pointlessly because a life like this is pointless anyway.

 

[Bill Bauer]

Although I improved

If you have been improving, don't you think there is a good chance that you will continue getting better over the coming months? If this might be the case, does this make you feel any better?

 

[Lex]

If you have been improving, don't you think there is a good chance that you will continue getting better over the coming months? If this might be the case, does this make you feel any better?

That's why I'm willing to wait six months. But the experience made me realize how a setback can happen any time and turn my life upside down. And how 30 seconds can cause months of misery (and only time will tell if I can ever go back to baseline). So physically I am better now, but mentally, I'm not. Just the thought of living my life like I'm on a minefield is enough to drive me crazy.

 

[Bill Bauer]

First of all, you can wear earplugs when you are at public places with lots of people like the mall. Second of all, you froze. Now you know not to freeze, but to run. You could even carry Peltor muffs everywhere you go with you (this is what I have actually been doing for the past three months now). It takes 2 seconds to slip those muffs on. If you were to do that on the day you got your secondary acoustic trauma, surely you would not suffer this much. If you learn from your mistakes, it is unlikely that you will experience a massive setback again.

 

[Lex]

@Bill Bauer I just hope I can survive this trauma. This illness doesn't give much hope for second chances.

 

[Michael Leigh]

So talking to a therapist is out, though I plan to get my hands on some anti-depressants. But really, those will act nothing more than a band-aid. My issue is lingering pain in reaction to even supposedly harmless sounds.

How do people who are in the same situation go on?

HI @Lex

I am sorry that you are feeling this way at the moment and believe when I say I understand. Not only from my personal experience dealing with loud intrusive tinnitus and very painful hyperacusis but also counselling people with our condition.

Please try and not close the door on talking to a therapist. I believe you mentioned that Hearing Therapists are not easily accessible at your location? However, if you can, try and talk to a counsellor, Psychologist or Physiotherapist. They may not have personal knowledge of tinnitus or hyperacusis but there is plenty of information available that they can read to bring them up to speed on how you feel. At least by talking to someone who's trained in listening to people gives you the opportunity to release all your pent up feelings on how you've been affected by tinnitus and hyperacusis. Over time you will be able to talk more and hopefully laugh.

Since you have a partner perhaps he might be able to spend more time with you? Again, just talking not necessarily about tinnitus can help with the healing process so that you don't feel so isolated. I also advise that you talk to your doctor or ENT consultant. Medication can be very helpful. Clonazepam for instance or antidepressant. Trying to go it alone when tinnitus or hyperacusis is severe is a huge task, try and make it easier on yourself. Please click on the links below and read my posts on mental health and tinnitus.

If you are using sound enrichment and find it hurts your ears? Try setting the volume low and use nature sounds from a sound machine or download them from the Internet. Music draws attention to itself and evokes emotions so is not the ideal source for night-time use. During the day music will suffice but keep the volume low especially if you're sensitive to sound. Try not to become too dependent on using hearing protection. I believe your first port of call is talking to your GP and getting a referral to a counsellor.

I wish you well
Michael

https://www.tinnitustalk.com/threads/can-tinnitus-counselling-help.22366/
https://www.tinnitustalk.com/threads/life-is-problematic.12317/

 

[Bill Bauer]

I just hope I can survive this trauma.

I was very happy to read that you are feeling better now compared to how you felt a month ago. This is such a good sign. You ought to be able to survive, as long as you don't get another acoustic trauma...

 

[Lex]

as long as you don't get another acoustic trauma...

The thing is, I can be very careful and that can still happen. I suppose that's true about life in general -- bad things happen no matter how you plan everything out. But I'm just so anxious and scared about getting another acoustic trauma on top of the pain I'm dealing with. And now I don't know what constitutes acoustic trauma for me, because almost all sounds cause pain. The thing that improved is the duration of pain and the time of onset. I notice that if I cough, the back of my ears will almost hurt immediately (as opposed to hurting much later) and it will stay that way for a few minutes (as opposed to hours).

Ah I'm so messed up now.

 

[Sen]

That's why I'm willing to wait six months. But the experience made me realize how a setback can happen any time and turn my life upside down. And how 30 seconds can cause months of misery (and only time will tell if I can ever go back to baseline). So physically I am better now, but mentally, I'm not. Just the thought of living my life like I'm on a minefield is enough to drive me crazy.

It's possible that setbacks may lessen in frequency, intensity, and length for you as time passes. In the beginning my setbacks would be unbearable and could last for 6+ months at a time, but now they are usually much shorter and less severe.

I don't know if this is due to sound therapy or just the passing of time, but at least it shows it can happen. I've read about other people having the same experience as well.

 

[Bill Bauer]

it will stay that way for a few minutes (as opposed to hours).

Sounds like a big improvement.

You managed not to hurt your ears for a year before the incident at the mall. If you are careful, it should be possible for you to avoid further injury.

 

[Yashin]

@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?

@Lex

I remember you from another thread. Have you found out something about the earlobes? Have you asked a doctor? I just googled and apparently you are not the only one with this weird symptom, which could have different causes. I have no time to read about it, and probably you have already done it.

I think that you should see if there is a separate pathology going on, like an allergy, a skin problem or something, but if you notice that these reactions are part of the same audiology problem, if they are somehow connected/analogous/proportional to your other symptoms, probably you don't have to do anything special about it. It seems that not only your tensor tympanis are affected, but also a zone around them is.

You are the one who must find out what is going on, I just give you my first impression knowing nothing about earlobes.

 

[Yashin]

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

@VRZ78

I have never read anything about "unhealthy" cochleas being less resistant to sound pressure, nor anything about the qualitative difference between natural aging cell death and sound-induced cell death, or drug-induced cell death. I suppose a death is a death (a dead hair cell, synapse, or whatever), and anyway, what are important are the still living cells, so from this point of view, there is no difference in sound resistance. But probably you have another information?

Everyone has "damaged" cochleas. If we follow your logic, everyone would be deaf, and would have tinnitus and "hyperacusis", as you call it.

The onset or worsening of tinnitus in people with "hyperacusis" has nothing to do with cochlear damage. These cases, precisely, are interesting to study the true causes of tinnitus. I don't know if cochlear damage has something to do with the possible chronicity of the tinnitus, I am talking about the onset (or worsening) itself.

It is not the first time that I read in forums references to the so-called "hidden hearing loss" as an important factor for explaining sound intolerance. I find this incredible, especially because what is written about it is meaningless.

The idea of a fragile cochlea is perfect as an alibi for phonophobic people. What is a bit "fragile" and uncomfortable, and sometimes painful, is a tensed tensor tympani mechanism. The level of intolerance is proportional to the level of tension/displacement/abnormality of this mechanism. Overlapping "hyperacusis" and "ttts" is beyond surreal.