21 Years with Tinnitus (from Heavy Jackhammers, Paxil) — It's Ruined Me and Taken My Happiness

[KReeder805]

Hi all.

I used to visit Tinnitus Talk frequently. My now ex (thank goodness) used to mock me for posting because she didn't understand, and I don't even think she believed me actually. Thanks to her I haven't dated in 5 years, because I know nobody understands, so what's the point?

My tinnitus started in 2001 when I worked on a construction excavation crew and used heavy jackhammers all the time. At that time it was pretty bad but it was intermittent. A few years later it became constant when I was taking the antidepressant Paxil. It was pulsating and painful at that time and I remember times when I'd just lay in bed holding my ears and crying because it was so bad. The pain and pulsation finally settled down and ever since I've had it in both ears, and it rings at slightly different very high pitches in each ear.

I've been to numerous ENTs who have all practically laughed me out of there offices. I've been to House Ear Clinic in LA where they were actually sympathetic, but naturally they couldn't do anything but tell me to try maskers and Lipoflavonoid. After spending tons of money on both of those without any results I gave up. I've experienced major depression and suicidal ideation, I've lost friends and loved ones who don't understand what I go through. It's ruined me and taken my happiness. I have to force myself to smile about anything if I can even manage to do that.

I'm glad this site is still up because at least I know there are people here who understand. If you read this, thank you. I need to spend more time here because I need some kind of outlet.

Wishing you all peace and silence.

 

[makeyourownluck]

Thanks to her I haven't dated in 5 years, because I know nobody understands so what's the point?

I understand your hesitation, but maybe you should think of putting yourself out there again when you feel ready (in environments that don't harm your ears of course). Another person might not fully understand, but they can empathise and provide support. Not everyone will minimise your experience like your ex did.

Are you still on ADs? It sounds like you're still very depressed.

 

[KReeder805]

Thanks for the reply.

Yes I am. I was off of them for a long time, but mid way through 2020 I made myself talk to someone and was able to find one that doesn't spike my tinnitus. I suppose this is the first step in putting myself back out there.

 

[Leila]

First of all, sorry to hear you're having such a hard time with your tinnitus and pain hyperacusis (?).

I found my way here pretty much because of the same reason you're here at the moment, things got to a point where I needed connect with other tinnitus sufferers because nobody who doesn't is capable to understand what having to deal with ear / hearing related problems 24/7 really means and does to a person's well being and mental health.

Just knowing that there are other people around who know what you're dealing with has made a huge difference to me. It didn't make miraculously cure my ears but it cheered me up a lot to have a place to vent and to get support when I need it but also offer my support to others when I feel strong enough and / or have something helpful to say.

I've lost friends and loved ones who don't understand what I go through. It's ruined me and taken my happiness.

There probably isn't a single one person here on Tinnitus Talk who hasn't lost a family member or friend because of their condition. It's just something you can't relate to if you've never suffered from it. It doesn't make it any easier but I've decided to look at it as a chance to start again from scratch. I know, the older you get the harder it gets to get out of your comfort zone and make new friends. But on the other hand, these new people have never known you without your tinnitus and won't have the expectations the old crew had.

Hopefully being here on Tinnitus Talk will have a positive effect on the frame of mind you're in, too.

All the best,
Leila

 

[makeyourownluck]

Thanks for the reply.

Yes I am. I was off of them for a long time, but mid way through 2020 I made myself talk to someone and was able to find one that doesn't spike my tinnitus. I suppose this is the first step in putting myself back out there.

That's good, I'm glad you've managed to find one that works for you. I feel like I need ADs but I'm too scared to take them. Do you mind me asking which one you take?

I actually have very similar tinnitus, 2 different high pitched tones, one in each ear. My right ear is louder, and a lower pitch than my left. I also have pulsatile in that right, but I've lost more hearing in that ear, so I suppose it makes sense. Do you have any measurable hearing loss?

I've been struggling a little recently tbh, so I decided to rekindle some old hobbies (the quieter ones), it's helped take my mind off the noise a bit.

I've got my fingers crossed that some treatments become available in the not to distant future. We all deserve a bit of peace.

 

[KReeder805]

I can't seem to figure out how to respond to either of you individually.

To 'make your own luck' - I don't mind at all. The AD I'm taking is called Amitriptyline which is generic for Elavil. There are a couple of side effects I've been dealing with that are a drag, but overall it has really helped and I'm actually feeling pretty good in relation to where I was when I started taking them. I'm actually in the process of backing off of it. The side effects I've been dealing with are dry mouth and slight constipation. The dry mouth has been the hardest to deal with because it can get fairly bad. I've learned to keep water and/or breath mints at the ready. What has also helped is being active and eating right. I've recently eliminated a couple habits that weren't serving me well, vices you might say, and replaced them with exercise and a healthy diet. I'm looking forward to being off ADs again and getting down to my ideal weight. It's interesting that your ringing is similar to mine. I'm already glad to be here connecting with someone who can relate. I'm sorry you've been struggling, and I'm glad you have hobbies to lean into that are helping you. Music is one of the hobbies that helps me a lot, both playing and listening. I'm a fingerstyle acoustic guitar player and anything John Prine soothes me in a way that nothing else does.

To 'Leila' - I already feel better by being here and I appreciate you pointing out that everyone here has suffered losses of friends and loved ones because of our condition. I also like what you said about new friends not having the same expectations as the old crew. It gives me hope to think that new relationships are out there waiting for me to find them, with people who will be more excepting of me in spite of tinnitus. I already feel like my frame of mind is better than the one I woke with this morning. Thank you.

 

[makeyourownluck]

Thank you, for discussing your medication! Sometimes I feel I should just bite the bullet and take something to help, but you know what it's like, the fear is strong!

I'm a fingerstyle acoustic guitar player and anything John Prine soothes me in a way that nothing else does.

I love this style of guitar, my brother is very good. When I was younger I used to listen to him play in his room while I fell asleep, so it became very soothing for me. I really love Andy McKee.

Do you record any songs? Or is it more for fun?

 

[KReeder805]

No problem! I definitely do understand being cautious. It's a big decision and in my case, with the Paxil, although I can't be sure it caused my tinnitus to become constant, I am fairly sure it caused it to spike and throb.

Andy McKee is awesome and Rylynn is one of my favorite tracks by him! There's another guy named Antoine Dufour who also records with Candy Rat who is also amazing. His song Reality really good. Some others I like are Doyle Dikes, Lawrence Juber, Billy Strings is an AMAZING up and coming Bluegrass artist who has had a lot of Jerry Garcia influence along with classic pickers like Tony Rice, Del McCoury and Doc Watson. I also really like Jerry Reed and Chet Atkin. They do a song called Jerry and Chet's Breakdown that is incredible. Arlo Guthrie, Bob Dylan, Glen Campbell... I could go on and on.

I don't do any recording, though I would like to. It's mostly just for fun and relaxation. I don't know my way around the fretboard really well. I've always been kind of stuck in open chords, or cowboy chords as a music teacher of mine called them. My pick hand is pretty well developed and if I could only develop my left hand a little more I would be really happy and then pursue writing and performing much more aggressively.

Do you play at all? Does your brother record?

 

[Leila]

It's great that you're feeling a little better just by being here It made a big difference to me, too, to come across people who just got what I was talking about and not question the state of my mental health because I'm hearing something they can't.

If you have the time, have a look around some of threads around here. Chit Chat is fun (most of the time ) and the picture thread is pretty cool, too. Or if you just want to see if somebody on Tinnitus Talk is going through something similar at the moment, do a keyword search and I'm sure whatever it is you're looking for will come up. If not, you'll just have to start a new thread

I can't seem to figure out how to respond to either of you individually.

Just use @ and add the name of the person you wish to address. Usually you only have to type a letter or two for a little window to pop up and offer you a list of user names to choose from.

Take care!

 

[makeyourownluck]

Andy McKee is awesome and Rylynn is one of my favorite tracks by him!

This is probably my second favourite, the things he does with a guitar is insane.

There's another guy named Antoine Dufour who also records with Candy Rat who is also amazing. His song Reality really good. Some others I like are Doyle Dikes, Lawrence Juber, Billy Strings is an AMAZING up and coming Bluegrass artist who has had a lot of Jerry Garcia influence along with classic pickers like Tony Rice, Del McCoury and Doc Watson. I also really like Jerry Reed and Chet Atkin. They do a song called Jerry and Chet's Breakdown that is incredible. Arlo Guthrie, Bob Dylan, Glen Campbell... I could go on and on.

So glad you have something you feel this passionate about. Your enthusiasm for it is literally thumping out the screen. That is how I feel about photography. I've not heard of Billy Strings, but will definitely give it a listen.

I don't do any recording, though I would like to.

I think you should go for it, and if you do, give me a shout so I can listen I've found acoustic guitar music to be one of the easiest to listen to since developing tinnitus.

My pick hand is pretty well developed and if I could only develop my left hand a little more I would be really happy and then pursue writing and performing much more aggressively.

Seems like a good goal. I've found giving myself a goal for the day, even just little ones, improves my mood a little. However, I don't work at the moment, so you are probably considerably more busy than I am.

Do you play at all? Does your brother record?

I wish, I've literally not got one musical bone in my body, the buck stopped with my brother lol. I'm more into visual art. When we were younger my brother sound proofed his bedroom and turned it into a proper recording studio (his bedroom was tiny). He had no formal training but could pick up any song by ear, and he naturally moved on to making his own. I've not really seen him pick up a guitar for years though, which makes me sad. He got married and got 'proper' job. Money makes the world go round...

We are having such a nice chat here, and I hate to bring tinnitus back into the conversation, but since you have very similar tinnitus to me, I would like to know if you get spikes due to loud noise? I feel quite odd on the forum because I don't really get spikes, just constant (moderate/mildly severe) noise in my ears 24/7, sometimes it seems louder, but I think it's just when I let it get to me. Also, since you're somewhat of a veteran as far as tinnitus goes, have you ever had any further worsenings caused by noise?

 

[kingsfan]

I also went to House Ear Clinic in LA within the first week of my tinnitus. The doctor just told me to stop drinking coffee, but he was very nice and took the time to listen to me. I should have just listened to him though, because I made my tinnitus way worse by continuing to go to doctors and investigating the cause.

 

[Damien666]

Hey dude!

Great to hear you are feeling a bit better. I know exactly how you feel when you say that people don't understand what you are going through. If you had a limp or a bad back people would fall over you with sympathy but when it comes to tinnitus they say it's a terrible thing and forget about it in seconds. For the most part I don't think it's done on purpose, it's just hard to imagine something you can't see or feel. I also think that's part of the reason finding a cure is so difficult. It's hard for doctors to understand because they can't see or feel it themselves.

My opinions are probably of no help but I have found a couple of ways to explain to friends and family what it's like having to deal with this horrible condition and it has helped somewhat.

I ask them to imagine they are in their house on a Saturday afternoon watching TV. Suddenly the next door neighbours car alarm goes off. After 30 seconds you can deal with it. 60 seconds in you're out of your chair and looking out the window. 90 seconds in you become agitated. Two minutes pass and you want to smash up the car with a sand iron and anything after three minutes the TV gets switched of and you head to the pub.

Also when I am in conversation I sometimes ask people to repeat what they just said. If they become indignant I calmly explain that in order to hear what they said I have to firstly concentrate and then try and block out the imaginary man who is screaming loudly in my ear.

Both work most of the time but when it doesn't I follow up by saying... imagine having to deal with that non stop for an hour. When they nod I then say... now imagine dealing with that every second of every minute of every day. That usually gets the message across.

Aside from that I think the most IMPORTANT thing is that you are still here, still fighting. You are not alone!

Best,
Damien

 

[KReeder805]

@kingsfan, you're the first person I've ever talked to that also went to House Ear Clinic. I thought it was interesting, the great big ear with the videos that teach you about the inner workings of the ear, and the display of all the antique hearing devices were my favorite things about it.

I've heard coffee makes it worse too. The part of your response that real stood out to me was that you feel like pursuing help for it actually made it worse. I've thought that many times, but never actually voiced it. It seems to me like the times when I thought about it the most and trying to get help were the times that it bothers me the most. I've gone through long periods of time when I just keep it to myself and do my best to ignore and those seem to be the times when it bothers me the least. Funny how the brain works.

 

[KReeder805]

@Damien666, thanks for the tips. Your opinion does matter. It's hard to make people understand. Even when we're able to explain it thoroughly, I still don't think they really get it. I had an app at one time that would generate feedback at any pitch. I was able to put it on both of my phones and set them to the exact pitches my ears ring at. I showed it to my sister and put my phones right behind her to give her the full experience. It was funny because she really didn't have much of a reaction and we haven't talked about it since.

I agree the most important part is staying in the fight and working toward a time when we can get some relief.

Thanks again!
Kevin

 

[KReeder805]

@makeyourownluck, I do get spikes from loud noises. The worst spike I ever had was at a jam session. The guy running the sound board had just gotten a new on and wasn't savvy with it yet. He accidentally blasted feedback through it and it literally almost brought me to my knees. It was super painful, gave me a headache and made my ringing so much louder that it caused me to panic because I thought it would be permanent. I also had a spike from listening to loud music in my headphones. You know how some music is recorded at different volumes? I put on an album that was much louder than the last, and it caused a spike. Again it was painful and gave me a bit of a headache in addition. Ironically enough it was an Audioslave album.

 

[Garfields60th!]

I also went to House Ear Clinic in LA within the first week of my tinnitus. The doctor just told me to stop drinking coffee, but he was very nice and took the time to listen to me. I should have just listened to him though, because I made my tinnitus way worse by continuing to go to doctors and investigating the cause.

How did the tinnitus get worse after going to the doctors?

 

[kingsfan]

How did the tinnitus get worse after going to the doctors?

I went for an extended high-frequency audiogram, and they performed an acoustic reflex test without informing me.

 

[Badger55]

My tinnitus went from moderate to severe reactive after a high-frequency hearing test in April of this year. It seems you had a similar experience. What impact did that have on you?

 

[kingsfan]

My tinnitus went from moderate to severe reactive after a high-frequency hearing test in April of this year. It seems you had a similar experience. What impact did that have on you?

Immediate, head-exploding unilateral 4 kHz pure tone, followed a few days later by an additional 6 kHz pure tone.

 

[Badger55]

Immediate, head-exploding unilateral 4 kHz pure tone, followed a few days later by an additional 6 kHz pure tone.

What I meant to ask is, did this high frequency test cause a permanent spike? Was that the reason for your suffering all these years?

 

[kingsfan]

What I meant to ask is, did this high frequency test cause a permanent spike? Was that the reason for your suffering all these years?

It wasn't the extended high-frequency test. In fact, I don't believe I was given anything other than a standard audiogram. I think it was the acoustic reflex test, and it was unbearably loud to me.

Yes, it gave me a permanent spike with two new tones.

At the time, it was the reason for my suffering, since I had been habituating fairly well. But even that tinnitus has worsened to a state that's very hard to deal with.

 

[Badger55]

Thanks for your detailed reply. This is further evidence that the reckless and thoughtless actions of incompetent audiologists are a major cause of tinnitus suffering. My high frequency audiogram in April turned my moderate and manageable tinnitus into severe multitonal reactive tinnitus, which has left me housebound and worsening week by week.