New to the Forum, Hello Bonjour

Hi!
My hyperacusis started in 2008 after several years of over exposure to loud music. I had taken prescription ibuprofen and was on major antibiotics once in a while. At first I was in pain all the time and every single noise hurt. Since, my ears have gotten a lot better. I can now go to quiet restaurants and to shopping malls. I have purchased a plane ticket to go back to Canada to see my family this summer (the first time in 9 years). I am worried about the flight...I bought a first class ticket to be right up at the front. Anyone have experience flying a long distance with hyperacusis?
Cora

 

Just wear ear muffs all the time and that's it !

Even economy class is fine with those

A good pair for the best noise reduction possible and comfort are the peltor x5a

Also good for long car drives or noisy places

 

I paint over the white line using a thick black marker and it looks like a pair of big headphones

 

Thanks for the support Bobby. I guess I will be ok. I also have noise-cancelling head phones (they cost 300$!) so I guess I will see what is the most comfortable! But during the safety presentation at the beginning I will have to put in some good old orange foam earplugs (they don't like it when you wear earphones... they think you aren't listening to them!).
I am just worried about the 3 hours in the airport, then the 9 hour flight and then 1 hour getting luggage... that equals 13 hours straight wearing heavy duty ear protection... are my ears going to survive the sensitivity afterwards?

Oh and also the vibrations of the plane motor... my ears really don't like the rumble of big trucks... ouch... for 9 hours ...sigh....

 

Ear plugs dont cut bass much and that's what you mostly get inside a plane or car, truck . Ear muffs are Better for bass especially this type and you can take them out whenever you want.
Most people think they are over sized ear phone but in fact most People don't even care at all everyone is thinking about their own little problems

 

And also - it's hard to insert those foam plugs deep into the ear to get the real 30db reduction - and what's more , you have to be super careful removing those as you could hurt the drum and get more damages by pulling them out too fast
Not to mention the risk to push wax deeper into the ear
If you have real ear issues the look aspect isn't a big priority at least for me

 

That's true... everyone has their own problems to worry about, and I have mine!
Good insight about the foam plugs not blocking out as much bass as earmuffs... that's important to me!
Oh and yeah, putting in and taking out those ear plugs isn't really comfortable. In my country I can get these wax earplugs that are pretty easy to manipulate, in a flash. They just sit in my ears, ready to be used if I need them. But there always seems to be a bit of suction involved each time... that can't be good for ears. I had a doctor 10 years ago who said to let wax gather up in my ears to help me block out sound...??

 

hi! just an update... I went back to Canada and sure it was noisy in the plane, but I wore wax earplugs and my noise cancelling head phones. I couldn't talk to the people around me (ouch!). It was annoying, still a bit painful, and I couldn't sleep, but I survived, no setback , no repercussions after.

 

Hi Cora! I am glad you made it to Canada with no major problems. I am curious about how your H evolved from 2008; did you improve your tolerance a lot over time? Do you still have daily issues with H or is it pretty much gone? Which treatments or medication did you try?

I have had H for many years too and it keeps playing up..

 

Well, I had painful hyperacusis for about 2 years. The pain has mostly gone away, and I can do many more things than I was able to at the beginning. My life is pretty quiet, my job, my life at home, so my ears had a chance to heal. Now I can expose them to more and more, for example dining in a moderately loud restaurant is ''ok'' now. Music/anything through a speaker, computer fans, and also when I raise my voice that all still BURNS immediately. But overall doing lots better. I have found that gingko lessens my tinnitus (but I don't have much tinnitus). I was on clonzepam for a couple years, that helps with the ear pain. But, please people, think twice before going on this med - very dangerous. Took me a long time to wean off it, and the severance caused horrible physical side effects, temporary, as well as long term I have noticed. Other than that, nothing has helped but time and quiet.

 

What sort of pain did you had? Direct pain upon hearing a sound or lingering pain?

 

oh yes contstant pain (ORL's don't get this). And now, pain lingers for a while if I am exposed to sounds my ears don't like.

 

Thanks for your reply! Then you are doing more or less like me.. only a partial recovery after many years of H, and some hearing loss due to unexpected very loud noises. Time and quiet are the only things that work for me too, plus a healthy diet and a bit of exercise (I should exercise more).

Right now things are going so so and after a very loud sound it can take at least 15 days for the pain, pressure etc to subside. Let's hope H will go away at some point!

 

yup, exactly like me!
Well, I find that the pain subsides in shorter and shorter spans of time... so that's a good thing.
I have hope that it will go away. But I have a feeling that I will never go to the movie theater again! That's ok, I didn't like watching long movies anyway!
Good luck to you,

 

ORL = ENT (for those who were wondering)

 

ah yeah! sorry! thanks Greg.

 

Hi Cora:

I was wondering if you could save me some time and suggest any French forums, if any, where one could exchange with others in the francophone world about hyperacusis. Obviously, I speak, read, and write French. And I live in Quebec.

I remember many years ago there was a forum called SOS-Audition but it has shut down a long time ago.

Marco

 

Hi Marco
I am signed up in the forum: Info-acouphenes.com. But they talk about ENT's, Hyperacusis centers, etc. that are in France. You can chat with others within the forum, live.

 

Thanks Cora. I will look them up.

Marco

 

Cora:

Referring to your experiences with clonazepam: how often did you use it, and at what doses? Did you need higher doses at some point for the effects you wanted? Did it actually help temporarily with the hyperacusis, as it did for me (not to mask as alcool does, and not just for pain) ? What were your withdrawal symptoms? I have used it a lot over 20 years but never had any withdrawal symptoms? These days ,as I go through a traumatic setback, it is having little effect on me, even 1.5mg unlike before. Why , I do not know.

Oh also, about the effects of speakers on you: lousy tinny speakers like on cheap TV or "ghetto blasters" wreck my ears quickly. This has what led to my present trauma. But music through good high-end speakers usually never bothered me. I really miss listening to music..sigh.It was sneaking in some music on my cheap TV that lead to my current trauma.



Marco

 

Clonazepam helped me with the ear pain, not total remission, but it helped. And it helped me sleep of course. If I could do it over again, I would have used the clonazepam while doing TRT/pink noise/? so the brain doesn't get habituated to the ear-pain connection. But only for the first 2 weeks. Then clonazepam gets addictive.

I took clonazepam for a couple years, every night. It was the liquid form, 2 drops a night, I am not sure what the equivalent would be in pill form, but it was very small (I believe my presciption said 10 drops a night!). I have heard that withdrawal doesn't effect some people, or as much, but it did me. I felt like every nerve in my body was shaking. It took me many months to withdraw completely. I was a wreck, it was terrible. Near the end, I started to become allergic to certain foods, out of the blue, and to alcohol: shortness of breath, apnea, numbness in hands, then painful nerves running down the right side of my body. Of course I can't say (nor any doctor) for sure that it was the clonazepam, but considering how powerful this neurological drug is, how it affected my body during withdrawal, and how it is supposed to affect nerves, in my opinion, it was the drug and/or the withdrawal process itself that caused these problems.It would have been a huge coincidence, having happened all at the same time.
Yes, your body gets accustomed to the dosage, and will need more and more to have the same effect. And I notice that today, if I take a drop of it (once in a while if I had a loud incident), it doesn't take the pain away like it did in the very beginning.

 

Cora: Thanks for relating your experience.

Well I never took the drug regularly, but only at times I was having setbacks, like the bad setback these days. But even at those restricted times I never had any addictive reactions, and my doses (1 to 2 mg) always had the same effect: actual temporary improvement of my hyperacusis, which was good for the morale ( it means I can actually get better!!) . Let me repeat: the h. actually was improved for a few hours, NOT masked as alcool would do . But now for the first time in 20 years, the drug is having little effect even after months having never used it. Could it be that the old pills lose their potency ?I will ask my pharmacist.

I have never experienced the drug as powerful except once: I was in a psychiatric hospital for a very acute panic attack in the first months of my h. due , I suppose, to the worry about my hyperacusis. They gave me clonazepam, and boom! panic all gone. I was astounded. Luckily I never have had to go back to a psych hospital for such an attack. It is something you do not want to experience. You feel like you are going to die...ugh

Even though I have never had any addictive reaction, I take your warnings seriously, especially since I had a long time girlfriend who was addicted to this drug. I mean she HAD to have a dose every day. I think with her it started because this drug was part of her epilepsy treatment but I cannot remember. I remember she was practically begging me to give her some of my stash when she was running out. I tried to get her to detox but she was not interested. Now I do not know what is happening to her since she is back in Poland and we are not together anymore. Lovely lady. Beautiful dancer.

Gotta go because the noise of tapping on the keyboard is now hurting my ears and burning pain is starting. That is the first time that has happened in 3-4 years. So I am not a happy camper, and very very worried, and getting really depressed.

Marco

 

Hang in Marco. I have had setbacks too, in the past year, and have bounced back. And it takes me less and less time to bounce back (I have had hyperacusis since 2008).
Oh yes I think that pills in general get less effective after the expiry date, or did they have an expiry date? I know the liquid stuff I have has a 2 year (about) shelf-life.
If only there was a natural way to ease the pain and the startle responses as I know I experienced at the beginning, and at each setback.... quiet, sleep.... hypnosis?

 

Yeah, that's a sign that things are improving: shorter recovery times! Did you get any hearing loss as a result to random noise exposures, or just as a result of H maybe?

 

Hi Juan
Yes, the word recovery is a magical word for us, isn't it? No I have absolutely no hearing loss. My hearing tests have always been perfect, as with many with hyperacusis.

 

a cause of benzo withdrawal: https://en.wikipedia.org/wiki/Paresthesia

 

Cora:

Wow, thanks for that link about the parasthesias. Finally I have a word to describe what I have experienced a lot over the last year. In fact I went to see a neurologist about these sensations a few months ago, and I will be seeing him again next tuesday after results of blood tests. Because of my setback I am so afraid to take a taxi to get there even if it is only 10 minutes away and I will have ear protection. I have had hyperacusis 21 years and it never gets easy. Another worry is that my parasthesias might be due to diabetes, but I have no other symptoms indicating that. Five years ago I had all sorts of such symptoms and they seemed to indicate a condition called peripheral polyneuropathy, but then they went away. Since last march, after an eye laser surgery for a retinal tear, these symptoms came on again ( anxiety?), and they have been on and off since.

Next thing:

Yesterday, I tried 1.5 mg of clonazepam from a fresh batch and I got the effect I wanted. No sound bothering me at all for a few hours. Maybe my old batch was not as potent due to time, since I rarely ever take any if my h. is OK.

Woke up today tough, and I am having a bad day again.I am actually typing with ear protectors on, something I have not done in years. So I am getting steadily worse for some reason. One possibility is that everytime I have a setback I have to re-arrange my daily routine to avoid situations that I can usually tolerate. So it's like: should I go that store later tonight or as usual this afternoon when there is more traffic? Should I talk on the phone less? Should I wear protectors while on my bike and take a risk not having my head protection? Should this message to you have been shorter, (but I need to share with others who understand me)? Am I making the right decisisons ? Etc.. It drives me nuts. Even after 21 years it is hard. And it is especially hard since I have been relatively OK for 3- 4 years since the last major setback . I mean, usually water coming out of a faucet or the crinkling of newspaper never bothers me. Now it does, and so does every little sound!

Anyways, thanks for your encouragement. I have always recovered from many of these more difficult setbacks, but sometimes it is long , and it always agonising.

Marco

 

Hi Marco!

I can relate to all those examples, newspaper, plastic, adjusting my schedule, when to go out, the possible presence of loud noise on the way, etc

What was the cause of your H, if I may ask? did you lose hearing over time due to noise? (I would like to compare my experience with other suffering from H for a long time)

My H stopped reacting to things like plastic, some dish noises, kitchen beeps and stuff like that only as I was losing hearing progressively. Before, the tolerance improved very slowly and from a very low level, in my particular case, and I never fully adapted to the sounds that were giving me trouble, even though I tried to live as normal a life as possible.

 

Hi Marco
oh you have this parasthesia too? I have been looking at diabetes too (but blood tests say everything is normal), and for sure the term peripheral polyneuropathy is familiar to me. Where do you have these sensations? Do you find that the clonezapam helps it or makes it worse?
About your keyboard, my colleague at work used a clunky keyboard that made my ears hurt. We found him a different keyboard that is quieter when you type.
Ah the challenges of having hyperacusis. I hear you. A year ago my sister and her husband came to visit me in France, and the ride up to Paris in a noisy diesel car put me in a hyperacusis depression with horrible pain. I thought, how am I going to manage going out to eat with everyone, let alone talking with my sister who I hadn't seen in 7 years, and taking the 7 hour trip back to my home? This is all going to be horrible, I thought. But the pain didn't get worse. I suffered, but it didn't get worse. I just lived day by day and protected my ears as I could. We even went to eat in a super noisy restaurant (no choice, we were starving), I ate with my ear plugs in all the way, and I could only whisper in my sister's ear during the meal. But the sharp burning pain went away. Sure it was suffering, but the pain was ''tolerable'' and it didn't get worse. There are sounds however that, for me, would make the pain and sensitivity worse: talking on a phone (especially a cell phone), listening to anything out of a (poor) speaker, rumbling of a diesel vehicule, computer fan... I guess the catalysts are different for everyone. Of course you want to avoid the pain that ensues after you are exposed to certain noises, soooo understandable. Good luck with your appointment. Keep us updated.