Did It On My Own Since 2006, But Need Help Now

[LifesABeach]

I'm new here, obviously.

I started with tinnitus in 2006. Also diagnosed by ENT with bilateral asymmetrical hearing loss at that time. I was freaking out a bit and the ENT spent a little time with me. After no results with non-Rx methods he put me on low dose clonazepam, which I took for something like two years before stepping down and out of the benzos. I thought, at least. At about the same time, my wife was diagnosed with advanced breast cancer and went through that whole thing (mastectomy, chemo etc) with me as her sole caregiver. With the added stress, the tinnitus skyrocketed (at least that's what I thought of skyrocketing at that point) and so I went back on the clonazepam for about six months and then was able to get off of it permanently.

My wife, thank God, was a trooper and we made it through that ugly experience together (our families live on the opposite coast and so we were sort of on our own).

My hearing loss (as far as I know) and tinnitus stayed stable until a few months ago. I had habituated as best as I could. A few days per month the tinnitus was terrible for no particular reason I could figure out. And sometimes loud noises or air travel or whatever boosted the volume, but most days were livable and so I'd made my peace with it.

Then the bottom fell out.

Significant additional hearing loss, bilaterally. And, I'm so sorry to say, about a 4-5 fold increase in the tinnitus volume. And it fluctuates all over the place now. Right is worse one day. Left is worse the next. Sometimes now it's head (central) noise, which it never was before. Sometimes the noise in one side or the other comes in waves, piercing me like an ice pick.

My ENT is not very amendable to drug therapy. That low dose clonazepam is still as far as he'll go. Even with raging tinnitus, headaches, neck pain, jaw pain, ear fullness and pain, nausea, dizziness and an ever increasing number of sleepless nights and days of obsessing over tinnitus and not being able to concentrate or socialize, he was unwilling to prescribe something to help me sleep or deal with this.

Saw my internist for some perspective. He's treated me and the wife for years and took one look and said, "you look terrible." His clinical exam confirmed it. I even had to leave the room to barf halfway through the examination. He took pity on me and prescribed zolpidem (5) for sleep and an anti-nausea med.

After maybe 7 nights on an every other night basis (I did get a lovely 3-4 hours sleep before being woken up by the frigging emergency broadcast system in my head) I stopped the zolpidem b/c I was terrified that it was causing a tinnitus volume increase. It's so hard to know for sure. I want to keep taking it because sleep is my only respite, but I'm terrified that I'll wake up even worse.

Anyway, right now I'm at a low point. My internist tried shifting me to a clinic that handles a lot of ENT stuff, but not necessarily a lot of tinnitus cases. That place prescribed amitriptyline (25 mg before bed) but didn't give me any info about the drug or side effects, etc. It was basically, "try this and if you don't like it or it makes you worse, just stop." Ummm, it's an antidepressant and I'm a newbie ... WTH?!

Sorry for the long stream of consciousness post, but I'm just so out of it right now. Thought I was a man's man, but right now I'm ready to cry. I just don't know what to do. Any hints from those more experienced than me.

Does zolpidem (ambien 5 mg, not controlled release) contribute to tinnitus?
Amitriptyline OK to try or not?
Some other antidepressant do a better job? Nortriptyline? Mirtazapine? One of the SSRIs?????
Benzo instead or in combo with AD? Neither?
I"m going for hearing aids with masker soon ... any preferred brand/model?
Do you put any stock in biofeedback, hypnotherapy and the like?
Other comments?

If not for my family, I'd just give up. At some point, I might even feel like I'm such a dead weight or worse that even they wouldn't stop me. I'm not on the ledge ready to jump yet, but I'd be lying through my teeth if I said I hadn't imagined myself up there.

Your help is much appreciated.

 

[Shaun]

Hi LifesABeach welcome to forum.

Sorry to hear about your current situation in sure it will resolve in time,don't beat yourself up about what is happening it's not your fault,we all go through it with t it's how you come out the other end is what's important.
I don't know much about zoplidem,but I tried zoplicone once they made my t worse so stopped them straightaway.
Amitrytipline sorry again not sure perhaps someone might have some experience with that.
I wouldn't take an antidepressant for months but finally gave in and took mitrazapine they really helped to get my sleep back on track,I still take them from time to time if I'm having a rough nite I have experienced no sides and wake up with low t,and no sides.
This is just my experience and and everyone's way dealing with t is different but this is partly is what has helped me in dealing with t.
Don't give in to it LifesABeach your stronger than you think,draw strength from your family I'm sure you will get better and get back to living.
Sorry I can't answer other questions maybe someone else will help.
Take care
God bless
Shaun

 

[Beth]

LifesABeach, my heart goes out to you. You are in good company here as many of us have been in your position. I have been on the ledge many times over the past few years but now I'm glad I didn't jump because although the t isn't much different, my attitude to it is. I never thought it was possible to be OK with really loud t and always believed other people who said they'd habituated to loud t were either lying or they hadn't got it as loud as I had.

Not reacting to it is the hardest thing ever but if you can do it for a few minutes at a time and increase it bit by bit it will help. I used to go into meltdown several times a day; I couldn't go out because I was dry retching all the time, sweating, fainting etc, etc, etc. Now I do whatever I want to. I thought it was impossible NOT to react to such torture but it can be done, if I can do it with my extremely anxious personality then you can too.

Do you use white noise generators? Have you been checked for TMJ problems? I'd get everything checked out though in my opinion seeing an ENT for tinnitus is as much use as seeing a gynaecologist as it usually has very little to do with our ears. I don't know where you live but is there any chance you could do TRT or have you looked and read (and listened to) the information on tinnitus.org, the TRT site? It helped me in my darkest days.

Stress is the real problem for most people with tinnitus and after what you have gone through with your wife, I am not surprized that you feel the way you do. Keep away from the ledge, you don't know what will happen in the future and like many on this site, there's a very good chance you'll be fine. The brain is very adaptable and you have lived many years in the past without hearing those sounds so will be able to do so in the future. Your body will still have all its sounds; music of the brain, random firing of the nerves of hearing, muscle noises, blood flow etc VERY highly enhanced because of the anxious state you're in but they were there before and you didn't notice so you'll get there again.

My thoughts are with you. Beth.

 

[LifesABeach]

Thanks to Shaun and Beth for your responses and kind words.

Shaun, glad you had success with mitrazapine. I've read generally good things about it re: helping those with T to get some sleep. Some even seem to say that it quiets T a bit. What dosage level did you use to get results? What type of doc prescribed it for you?

Beth, it was good to read that you've been able to habituate to loud T. At this point, my reasoning mind believes you but my emotions (which are right on the surface these days) keep telling me it's fantasy and there's no way I'll ever be able to habituate my current level of T even though I did it once before at a lower level. (Funny you should mention dry retching ... I've been doing that myself, along with actual vomiting ... party time :-(

Yes, I do use white noise or nature sounds at night. They helped during my earlier battle with lesser T, but now it's like shooting a spitball at a freight train ... just doesn't help much. I need to get hearing aids and I'll get some sort of masker built in. Hopefully it will help at least a little.

As for TMJ, yes, I have an appointment scheduled with somebody in a few weeks to have that checked out. Hoping for the best, but if they just want to try a guard, I know that's not going to help. (I'm like a dog with a bone - if you put something in my mouth it's just going to make me want to chew it and that just tightens up my jaw more.)

Yes, I do live in an area were TRT is a possibility. I just see so many mixed reviews of it that I hesitate to commit, especially when it takes 18-24 months to see any results.

Thanks again for your thoughts, Shaun and Beth. (I guess my post was too long to prompt many relies!)

 

[Paul201]

Sounds like you have quite a bit of hearing loss, maybe the hearing aid and masker will do the trick for you. I know it has for some people, a relative of mine included. If the t stays as loud as it is then maybe you can take inspiration from other members on here who deal with real loud t and seem to live with it and more. If not then trt may be your best option, but the masker may be enough on its own to eventually get your brain used to the louder t, hopefully