New to the Forum, Hello Bonjour

[Marc22]

Dear Juan:

I got hyperacusis after driving a car without a muffler from Ottawa to Montreal here in Canada, a 3 hour ride. The muffler broke while I was riding the car on a rutty country lane. I suppose a wheel went into a depression and the muffler scraped the ground and busted. Anyways, I said to myself: well I will drive it back to Montreal and get it fixed there , maybe not having enough money to get it repaired in Ottawa. It never occurred to me that I might hurt my ears. After all, how different is a 3 hour drive without a muffler from a 3 hour rock concert, or hours in a dance bar? BIGGEST MISTAKE OF MY LIFE!! Actually I got only tinnitus at first , but 2-3 months later the hyperacusis started. I was noticing hypersensitivity in movie places at first. Then I got the diagnosis. I of course did not know how bad this could get in my case, so the first months were an agony of worry. I was so tormented that I lost 25 lbs on an already skinny frame, and went to the psych ward 3 times for acute panic attacks and suicidal depression. Then I stabilised physically and started to adjust psychologically to a new life. Thinking back I actually had a mild case, but I still had to be careful.

Now, over the last 21 years , 95% of the time I have had a moderate case. By that I mean, most sounds do not bother me (except sounds from cheap tinny TV speakers, which is what caused this present setback). But I still have to stay in quiet areas because if I overexpose to noise, I can quickly go into severe hyperacusis, which is what I have these days. And by that I mean: every sound is annoying...water coming out of the faucet, newspaper ruffling, spoons clinking on a plate (ugh!), swallowing sounds, floor boards squeaking... Any improvement I have had has not come from hearing loss but from actual improvement of the h..

Cora:

I have had intermittent parasthesias for about a year. Before that, about 4-5 years ago, I had some that seemed to fit the pattern of peripheral polyneuropathy, but the official diagnosis was that I did not. And anyways those parasthesias went away. It would not have surprised me that I had came down with peripheral polyneuropathy because I drank a A LOT of alcool over the the last 21 years mainly due to my distress about having h.. And excess alcool consumption can screw up your nervous system big time, not surprisingly (had I known, I would not have cared to tell you the truth). But there were other reasons. I hardly drank over the last year, but now , with this setback it's back to the beer and pills. I can't help it: I just get too distressed and I don't care if it messes my body up. However, I can't say that 1 or 2 bottles of beer a day is going to kill me off tomorrow! or 1. mg of clonazepam. It's not like before when it was a bottle of wine per day, or equivalent in cheap beer. Went to AA: totally useless in my case. They could not understand me, and I am not a spiritual person. And alcoholism is not a disease. People drink because they are unhappy for various reasons.

My parasthesias are: burning sensations in the thighs, arms, prickly sensations all over, numbness after lying in certain positions, more than what affects most people etc.... Once I thought I was having a mild stroke,because some sensations are similar. So off to the emergency ward. No stroke luckily. The neurologist says they see people regularly in emergecy with mild stroke-like symptoms like some of of these parasthesias. They do not know what causes these, so they write them off as "stress" related. It comes and goes. Been quite OK since Xmas.Never saw any relations of these sensations to clonazepam. One day water from the shower on my skin hurt me! That never recurred luckily.

Sorry to hear about that 7 hour car ride incident. Please don't do it again! I would never ride in a car more than one half hour even with protection, even when things were OK with my ears. I am freaking out just thinking of 2 upcoming 10 minute rides back and forth from the doctor on Tuesday.

By the way, how are you now generally, when things are "normal"? It's not quite clear to me from your posts (unless I am dense, which is possible ) Does water out of the faucet bother you? Voices? Newspaper crinkling?

Interestingly, started off really bad today even in silence at home ....utter freak out ( it's like OMG...!!!) , and now , a few hours later ,much better for some reason. Weird how it fluctuates sometimes for no apparent reason. But my setback is not over of course.

Again, thanks a lot for your support. And thanks to everyone else also.It really helps.

Marco

 

[CoraFrance]

Marco it's weird, we are almost going through the same thing, as well as having hyperacusis.... now I am getting convinced that perhaps this nerve stuff is really coming from the benzo. I read something again today that it is connected. When you drink, do you feel anything happening to your nerves? The scan they did showed nothing; I am super scared of having to get an MRI ... I will suffer until, until, until I have NO choice but to get one.
As far as I am hyperacusis-wise, I think I am doing pretty good these days. I can drive my car for hours with my wax ear plugs just sitting in, cutting out maybe 25% of the noise. No, water running doesn't bother me too much. Voices do bother me. I have a 7 year old daughter and well she talks loud My boss talks very loud and it resonates with the tile floor in the office, I have to wear my headphones when he is talking on the phone. Newspaper, no, not really. Porcelain dishes touching, ouch, makes my ears crackle with pain. I am ok shopping, but if there is music, I put in the earplugs. Oh don't you hate the TV's in stores that advertise products!!?? I unplug them when no one is watching! I can go to quiet restaurants. Still don't have my life back, I used to love to salsa dance, and go places, and was a real dynamic person. Now talking (loud) hurts! I used to be a teacher. But I guess I am getting better and better, so I do have hope!
How are your ears today? I find that my ears are worse in the middle of night, and only slighty better in the morning. They get less sensitive as the day wears on.
Do you have ear pain as well as sensitivity?

 

[VRZ78]

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

When you take clonazepam you find that no sound bother you but maybe that doesn't mean that they are not damaging your ears and that's why you have a stepback the next morning ?

 

[CoraFrance]

How was your doctor's appointment today, Marco? Did everything go ok?
Regarding our discussion on parathesia, this is what wikipedia says:
''Benzodiazepine withdrawal may also cause paresthesia as the drug removal leaves the GABA receptors stripped bare and possibly malformed.''
Great! I wonder if doctors know this before they prescribe this poison. And I wonder what the treatment is.... it's all a guessing game, just like hyperacusis, we have to figure out our own solutions.

 

[Marc22]

Dear Cora:

Well first some good news: just got back from the neurologist and they could find no source for my parasthesias, which ,in any case, have been non-existent since Xmas. So, no diabetes, lupus, or, like, whatever. .The bad news is that I was a wreck all day worrying about the possible neurological diagnosis, my h. of course, and the taxi rides to and fro. My neurologist could sense my nervousness and suggested a psychiatrist. Oh, right...like how is a psychiatrist gonna help physically damaged ears and the resultant understandable anxiety from worry? What you could do, I asked ,is to give me a prescription for more clonazepam , which he refused. Let your regular doctor do that, he said.

I do not find that alcool affects my nerves in a parasthesia way. What does a bit is my tap water at home which produces some weird sensations. But if I boil the water it is OK. I should really get that water tested but I have found that getting many things done , besides just pure survival stuff, is too much of a drag over the last few years, especially because of the h. . Like getting new glasses made , or buying clothes, or buying a new sound system that won't wreck my ears: you have to phone them up, explain the h., ask to stop the music in the store, travel through traffic on a taxi, etc.. Too much hassle.

Next thing: DO NOT GET AN MRI DONE!! I hear they are way too loud, and many persons have wrecked their ears permanently into extreme irreversible hyperacusis. Some things can be tested with a CT scan, which is quiet I found (low humming for 5 minutes). Ask about quiet alternatives. You may remember that I mentioned a few posts ago that I went to the hospital for a possible stroke. They wanted to do an MRI. I refused. So they did a CT scan instead, which is not as good but adequate. Just last week I was talking to a fellow h. sufferrer and he had a MRI done, and he had a bad 3 month setback. He was lucky he recovered to a tolerable level. Some are not so lucky. I would rather possibly die than have an MRI. The resulting extreme h. would probably kill me indirectly anway so why take the chance?

You certainly have an interesting mix of sounds that do and do not bother you. In my case, when I am OK, no sound in quiet environments bothers me (except for tinny sounds from cheap speakers, which led to my current crisis). That being said ,I never expose myself to loud environments except very temporarily. When I am not OK, as these days, all sounds bother me. When I walked into the clinic-minimall for my doctor apt today, every sound there just hit me bad , because of the echo effect I think. Not to mention that some impatient snotty rich bourgeois lady with shades blasted her horn at me and the taxi driver as I was paying the taximan, just before. Got out of the car, gave her the finger, her expression did not change at all. A total uncaring mask. Like I was in no mood today for any moron to hassle me, let me tell you.

Yes I do get pain only when I am in a setback. Otherwise, never. I have no idea what brings it on. Like this morning, reading in my room in the quiet, it started coming on. Why?! As far as overnight, that is my best time ear-wise these days. No sounds bother me ; that is why I look forward to sleeping so much these days (had some beautiful dreams last night, involving discussing music with Spike Lee and singing with some other singer, wild colors etc... ). It is when I get up that it is the worst for me. As soon as I hear sounds, like brushing my teeth, etc.. I start to get worse. Then I improve somewhat as I leave the house for the local library, and then usually I am even better towards the end of the day. Watching good movies, and reading interesting books helps a lot, even when I am OK (like this film called 'Adam' last night; artists and intellectuals seem to care about what I care about , so.. j'ai presque tout le temps le nez dans un livre ou en train de regarder un film profound ou loufoque) .Then sweet oblivion...

Marco

PS: Just got your second message . That info about the benzos freaked me out. You see, alcool, can do the same in its own way, leading to alcoholic polyneuropathy. Part of me cares ...and part of me does not unfortunately. When I am in in high anxiety I want relief NOW, and to hell with the consequences.

Damm, forgot to ask my neurologist about reversible and irreversible nerve damages. I was just too anxious to remember everything. If this is any consolation, there are people who drunk a zillion times more than me and suffered no nerve damage...other stuff though of course like liver damage. So who knows what is going on? Better to keep away from all drugs if possible. But when the urge is on...goodbye baby. It is amazing what the body can take. I am reading the autobiography of a heavy metal artist Ozzy Osbourne, and it is amazing what the guy put in his body and he is still alive and kicking at 69 years old. Not that I was ever into heavy metal music, but I liked reading this book. He is SSSSOOOO FUNNY!and a very sensitive guy.

 

[VRZ78]

Dear Cora:

Well first some good news: just got back from the neurologist and they could find no source for my parasthesias, which ,in any case, have been non-existent since Xmas. So, no diabetes, lupus, or, like, whatever. .The bad news is that I was a wreck all day worrying about the possible neurological diagnosis, my h. of course, and the taxi rides to and fro. My neurologist could sense my nervousness and suggested a psychiatrist. Oh, right...like how is a psychiatrist gonna help physically damaged ears and the resultant understandable anxiety from worry? What you could do, I asked ,is to give me a prescription for more clonazepam , which he refused. Let your regular doctor do that, he said.

I do not find that alcool affects my nerves in a parasthesia way. What does a bit is my tap water at home which produces some weird sensations. But if I boil the water it is OK. I should really get that water tested but I have found that getting many things done , besides just pure survival stuff, is too much of a drag over the last few years, especially because of the h. . Like getting new glasses made , or buying clothes, or buying a new sound system that won't wreck my ears: you have to phone them up, explain the h., ask to stop the music in the store, travel through traffic on a taxi, etc.. Too much hassle.

Next thing: DO NOT GET AN MRI DONE!! I hear they are way too loud, and many persons have wrecked their ears permanently into extreme irreversible hyperacusis. Some things can be tested with a CT scan, which is quiet I found (low humming for 5 minutes). Ask about quiet alternatives. You may remember that I mentioned a few posts ago that I went to the hospital for a possible stroke. They wanted to do an MRI. I refused. So they did a CT scan instead, which is not as good but adequate. Just last week I was talking to a fellow h. sufferrer and he had a MRI done, and he had a bad 3 month setback. He was lucky he recovered to a tolerable level. Some are not so lucky. I would rather possibly die than have an MRI. The resulting extreme h. would probably kill me indirectly anway so why take the chance?

You certainly have an interesting mix of sounds that do and do not bother you. In my case, when I am OK, no sound in quiet environments bothers me (except for tinny sounds from cheap speakers, which led to my current crisis). That being said ,I never expose myself to loud environments except very temporarily. When I am not OK, as these days, all sounds bother me. When I walked into the clinic-minimall for my doctor apt today, every sound there just hit me bad , because of the echo effect I think. Not to mention that some impatient snotty rich bourgeois lady with shades blasted her horn at me and the taxi driver as I was paying the taximan, just before. Got out of the car, gave her the finger, her expression did not change at all. A total uncaring mask. Like I was in no mood today for any moron to hassle me, let me tell you.

Yes I do get pain only when I am in a setback. Otherwise, never. I have no idea what brings it on. Like this morning, reading in my room in the quiet, it started coming on. Why?! As far as overnight, that is my best time ear-wise these days. No sounds bother me ; that is why I look forward to sleeping so much these days (had some beautiful dreams last night, involving discussing music with Spike Lee and singing with some other singer, wild colors etc... ). It is when I get up that it is the worst for me. As soon as I hear sounds, like brushing my teeth, etc.. I start to get worse. Then I improve somewhat as I leave the house for the local library, and then usually I am even better towards the end of the day. Watching good movies, and reading interesting books helps a lot, even when I am OK (like this film called 'Adam' last night; artists and intellectuals seem to care about what I care about , so.. j'ai presque tout le temps le nez dans un livre ou en train de regarder un film profound ou loufoque) .Then sweet oblivion...

Marco

PS: Just got your second message . That info about the benzos freaked me out. You see, alcool, can do the same in its own way, leading to alcoholic polyneuropathy. Part of me cares ...and part of me does not unfortunately. When I am in in high anxiety I want relief NOW, and to hell with the consequences.

Damm, forgot to ask my neurologist about reversible and irreversible nerve damages. I was just too anxious to remember everything. If this is any consolation, there are people who drunk a zillion times more than me and suffered no nerve damage...other stuff though of course like liver damage. So who knows what is going on? Better to keep away from all drugs if possible. But when the urge is on...goodbye baby. It is amazing what the body can take. I am reading the autobiography of a heavy metal artist Ozzy Osbourne, and it is amazing what the guy put in his body and he is still alive and kicking at 69 years old. Not that I was ever into heavy metal music, but I liked reading this book. He is SSSSOOOO FUNNY!and a very sensitive guy.

Could you tell me what sound system does not wreck your ears ? Thanks

 

[Marc22]

Dear VRZ78:

I was just going to write back to you in reply to your first message to me. I am sorry that I did not reply earlier because I was confused as to whether that message was addressed to me or not. In reply to the first message: it is possible that my ear is being damaged anyway but I do not think so. The anesthesing of alcool would be more likely to have that effect since the h. stays but you don't care if you feel it. Still, any artificial diminishing of pain would seem to be suspect . I suppose no one knows truly about these things.It is not something I want to make a habit.

In reply to your second question: high quality sound systems do not wreck my ears. That does not mean that I would expose my ears to them for a long time. To give you 2 more concrete examples: I used to go to a friend's place to listen to jazz with him and I could easily withstand the sound at a reasonable level for a half hour because his system was good. Another example: my local natural food sore has a so so system and I can easily withstand it for 15 minutes. What I never do is go into a clothing store with loud disco industrial music even if their systems are good. That would kill me fast. As a result I have few clothes: 2 pairs of jeans and 3 shirts. I ask people to go buy me some clothes when I am on the verge of nakednes.!

Take care.
Marco

 

[Juan]

Dear Juan:

I got hyperacusis after driving a car without a muffler from Ottawa to Montreal here in Canada, a 3 hour ride. The muffler broke while I was riding the car on a rutty country lane. I suppose a wheel went into a depression and the muffler scraped the ground and busted. Anyways, I said to myself: well I will drive it back to Montreal and get it fixed there , maybe not having enough money to get it repaired in Ottawa. It never occurred to me that I might hurt my ears. After all, how different is a 3 hour drive without a muffler from a 3 hour rock concert, or hours in a dance bar? BIGGEST MISTAKE OF MY LIFE!! Actually I got only tinnitus at first , but 2-3 months later the hyperacusis started. I was noticing hypersensitivity in movie places at first. Then I got the diagnosis. I of course did not know how bad this could get in my case, so the first months were an agony of worry. I was so tormented that I lost 25 lbs on an already skinny frame, and went to the psych ward 3 times for acute panic attacks and suicidal depression. Then I stabilised physically and started to adjust psychologically to a new life. Thinking back I actually had a mild case, but I still had to be careful.

Now, over the last 21 years , 95% of the time I have had a moderate case. By that I mean, most sounds do not bother me (except sounds from cheap tinny TV speakers, which is what caused this present setback). But I still have to stay in quiet areas because if I overexpose to noise, I can quickly go into severe hyperacusis, which is what I have these days. And by that I mean: every sound is annoying...water coming out of the faucet, newspaper ruffling, spoons clinking on a plate (ugh!), swallowing sounds, floor boards squeaking... Any improvement I have had has not come from hearing loss but from actual improvement of the h..

Cora:

I have had intermittent parasthesias for about a year. Before that, about 4-5 years ago, I had some that seemed to fit the pattern of peripheral polyneuropathy, but the official diagnosis was that I did not. And anyways those parasthesias went away. It would not have surprised me that I had came down with peripheral polyneuropathy because I drank a A LOT of alcool over the the last 21 years mainly due to my distress about having h.. And excess alcool consumption can screw up your nervous system big time, not surprisingly (had I known, I would not have cared to tell you the truth). But there were other reasons. I hardly drank over the last year, but now , with this setback it's back to the beer and pills. I can't help it: I just get too distressed and I don't care if it messes my body up. However, I can't say that 1 or 2 bottles of beer a day is going to kill me off tomorrow! or 1. mg of clonazepam. It's not like before when it was a bottle of wine per day, or equivalent in cheap beer. Went to AA: totally useless in my case. They could not understand me, and I am not a spiritual person. And alcoholism is not a disease. People drink because they are unhappy for various reasons.

My parasthesias are: burning sensations in the thighs, arms, prickly sensations all over, numbness after lying in certain positions, more than what affects most people etc.... Once I thought I was having a mild stroke,because some sensations are similar. So off to the emergency ward. No stroke luckily. The neurologist says they see people regularly in emergecy with mild stroke-like symptoms like some of of these parasthesias. They do not know what causes these, so they write them off as "stress" related. It comes and goes. Been quite OK since Xmas.Never saw any relations of these sensations to clonazepam. One day water from the shower on my skin hurt me! That never recurred luckily.

Sorry to hear about that 7 hour car ride incident. Please don't do it again! I would never ride in a car more than one half hour even with protection, even when things were OK with my ears. I am freaking out just thinking of 2 upcoming 10 minute rides back and forth from the doctor on Tuesday.

By the way, how are you now generally, when things are "normal"? It's not quite clear to me from your posts (unless I am dense, which is possible ) Does water out of the faucet bother you? Voices? Newspaper crinkling?

Interestingly, started off really bad today even in silence at home ....utter freak out ( it's like OMG...!!!) , and now , a few hours later ,much better for some reason. Weird how it fluctuates sometimes for no apparent reason. But my setback is not over of course.

Again, thanks a lot for your support. And thanks to everyone else also.It really helps.

Marco

Hi Marco,

Thanks for your detailed reply! It seems to me that you are doing well, if you have been suffering from H for so long and still managed to keep it at a moderate level.

Alcohol acts on the nervous system. It depresses the central nervous system and therefore acts on brain activity, cells, tissues, etc So it can affect how you perceive sound, as it would have an impact on the central processing of sound.

Avoid the MRI if you can; I do not recommend it to anyone unless there is a reasonable suspicion that something may be physically very wrong and they need to check (accoustic neuroma and stuff like that, but these are rare things).

Try to keep your hearing, as H seems to be harder to deal with when there is a bit of hearing loss, as there is less sound input that one wants to hear (sounds with a low and medium decibel level) and the loud sounds still hurt a lot.

Best wishes!

Juan

 

[Marc22]

DearJuan:

Thanks for your reply.

I try to avoid all drugs if possible, including alcool. Unfortunately, over 21 years of h. , I picked up the habit of reaching for a drink often when I have a setback of h.. I try to resist but usually cannot. It's not as bad these days as many years ago, but old habits die hard. I think that when I come down from the alcool it makes the h. worse but I am not sure. Best to avoid all drugs if one can, and forgive yourself if you do use. If I am OK physically and psychologically, I use no drugs

Marco

 

[Marc22]

How come one cannot vary one 's mood indicator from post to post? I like those mood indicators: they're funny mostly, at least to me.

 

[VRZ78]

Dear VRZ78:

I was just going to write back to you in reply to your first message to me. I am sorry that I did not reply earlier because I was confused as to whether that message was addressed to me or not. In reply to the first message: it is possible that my ear is being damaged anyway but I do not think so. The anesthesing of alcool would be more likely to have that effect since the h. stays but you don't care if you feel it. Still, any artificial diminishing of pain would seem to be suspect . I suppose no one knows truly about these things.It is not something I want to make a habit.

In reply to your second question: high quality sound systems do not wreck my ears. That does not mean that I would expose my ears to them for a long time. To give you 2 more concrete examples: I used to go to a friend's place to listen to jazz with him and I could easily withstand the sound at a reasonable level for a half hour because his system was good. Another example: my local natural food sore has a so so system and I can easily withstand it for 15 minutes. What I never do is go into a clothing store with loud disco industrial music even if their systems are good. That would kill me fast. As a result I have few clothes: 2 pairs of jeans and 3 shirts. I ask people to go buy me some clothes when I am on the verge of nakednes.!

Take care.
Marco

I see thanks for replying. Maybe buy clothes online ?

 

[Marc22]

One factor no one has mentionned about benzos is possible depression resulting from the regular slowing down of the nervous system.

Marco