Does Tinnitus Ever Become Part of Your Life?

[TinaB]

Hello all. General question to you long-time sufferers of tinnitus. Does it ever get to be just a background noise you get used to?

I've had mine since August 2017 and it came on suddenly (high pitched whistle). I have the usual helps with noise machine for sleeping (train and ocean works best) and even invested $2300 for hearing aids with tinnitus masker. I only have minor hearing loss but was desperate to try anything. I am on a low dose of Elavil due to the onset of anxiety with this condition, which does help as well. Sorta getting used to it but early morning and bedtime is the hardest.

Soooo... does it seem to be more adaptable over time?

Thanks in advance.

 

[threefirefour]

If you can get used to it then congrats. The majority do but some simply can't. The latter (like me) is the small minority so if you think you can don't worry about it. Hope you recover more.

 

[Pleasure_Paulie]

Mine annoys me at night and inside still. I just keep comparing myself on a number scale verse onset. If I was a 0 then, even if I'm a 3-4 now I'm making progress and that's positive.

I think the difference is you stop searching for cures, not that you don't want one. It becomes more about strategies of improving and dealing the condition; which certainly can be achieved.

 

[TuxedoCat]

Great question TinaB. I'd be interested in the answers as well because according to my CBT therapist, without a cure it has to become "part of you". TC

 

[Jazzer]

Does it ever get to be just a background noise you get used to?

All the time I just fretted, sobbed, and cried about it, it got worse. Just so horrible.
I did not think I could live with it.
I thought I was in the last days of my life.

Eventually I decided on a course of action.
Once I truly took on board the fact that my hiss/noise was truly here to stay, I decided I had to educate my self to accept it as normal.
I use meditation, and auto-suggestion to repeat:

"Easy Dave - Hiss Is Normal."

I no longer panic, and I no longer fall into despair.
I am definitely both calmer, and more cheerful.
Dave xx

 

[Tweaker]

The old phrase from arch enemies in films, "Resistance is futile" is kinda true with tinnitus. 10 years for me. I was suicidal at beginning. Now it's a part of me. I don't look for a cure. It is what it is. I still have trouble sleeping cos of the loudness but aniety and depression is not there much now. Being outdoors helps the most. Have made great friends through support group, that I never would have met and my resilience to hardships is a lot better so not all bad. Do I still wish it wasn't there? Yes, I do, but I pity myself much less than I used to.

 

[T Toledo OH]

@linearb, may I ask how the Gabapentin and Klonopin are working for you? How much of a reduction in volume/reaction have you experienced and what is dosage you are taking?

I have been on Klonopin for 9 months since the start of my tinnitus. Originally 1.5 mg a day and now down to .5 mg a day but not getting any relief. I am considering discussing adding Gabapentin if my GP will allow it. Any side effects?

 

[linearb]

@linearb, may I ask how the Gabapentin and Klonopin are working for you? How much of a reduction in volume/reaction have you experienced and what is dosage you are taking?

I have been on Klonopin for 9 months since the start of my tinnitus. Originally 1.5 mg a day and now down to .5 mg a day but not getting any relief. I am considering discussing adding Gabapentin if my GP will allow it. Any side effects?

Ask me again in a month or two; mostly life has continued to be fine but I had a really shitty go of things over the couple weeks so I need to figure out what that's about. I am having a TMJ flare, I believe, which may be contributing to things.

 

[Jack V]

Ask me again in a month or two; mostly life has continued to be fine but I had a really shitty go of things over the couple weeks so I need to figure out what that's about. I am having a TMJ flare, I believe, which may be contributing to things.

Do you use any dental device for your TMJ? If so, does it help?

Thanks (and sorry to hear about your last couple of weeks).

 

[linearb]

Do you use any dental device for your TMJ? If so, does it help?

Thanks (and sorry to hear about your last couple of weeks).

I do, and, in fact, I had been neglecting using it for 3-4 weeks for bad, lazy reasons before all this started. So I think it's entirely possible I flared my own TMJ and that's all that's happening here.

 

[T Toledo OH]

Ask me again in a month or two; mostly life has continued to be fine but I had a really shitty go of things over the couple weeks so I need to figure out what that's about. I am having a TMJ flare, I believe, which may be contributing to things.

How are you now? Are Klonopin and Gabapentin helpful? My doctor said he would prescribe if I wanted to try.

 

[linearb]

How are you now? Are Klonopin and Gabapentin helpful? My doctor said he would prescribe if I wanted to try.

I'd say I feel okayish again and am sort of back to where I was before things got bad for a while there.

If you asked me to explain why any of that is the case, I would shrug my shoulders. I did just have some kind of TMJ flareup, along with headaches that persisted for a f'ing month and then finally responded to Valtrex, so it's possible I had some kind of viral inflammation of TM-linked nerves, either from latent herpesvirus or Epstein-Barr, but it's also possible it's all totally unrelated.

I still have tinnitus. It's still annoying and probably the #1 thing in my life I'd change if I could. But, when I close this forum window, I expect I will go have a normal work day and not think about this stuff too much during it, something that was mostly impossible for years.

Will this keep working long term? Who knows!! Is it dangerous as hell to find out? Yep...

Also, make sure your doctor is woke to benzos and would support a crossover to valium followed by a long, long taper if you ever wanted to get back off the drug. Sometimes people get pulled off abruptly and suffer neurological damage as a result. Benzos are crazytown.

 

[T Toledo OH]

I'd say I feel okayish again and am sort of back to where I was before things got bad for a while there.

If you asked me to explain why any of that is the case, I would shrug my shoulders. I did just have some kind of TMJ flareup, along with headaches that persisted for a f'ing month and then finally responded to Valtrex, so it's possible I had some kind of viral inflammation of TM-linked nerves, either from latent herpesvirus or Epstein-Barr, but it's also possible it's all totally unrelated.

I still have tinnitus. It's still annoying and probably the #1 thing in my life I'd change if I could. But, when I close this forum window, I expect I will go have a normal work day and not think about this stuff too much during it, something that was mostly impossible for years.

Will this keep working long term? Who knows!! Is it dangerous as hell to find out? Yep...

Also, make sure your doctor is woke to benzos and would support a crossover to valium followed by a long, long taper if you ever wanted to get back off the drug. Sometimes people get pulled off abruptly and suffer neurological damage as a result. Benzos are crazytown.

I am only taking .25mg of Klonopin in the morning with 100mg of Gabapentin, and then another 100mg of Gabapentin in afternoon and evening. I have been on and off of Klonopin several times without any issues weening down. I was never taking more than 1.5 mg a day. Adding the Gabapentin is what has changed. I also take 150mg of Elavil and 10mg of Seroquel at night to help sleep. Also doing TRT.

 

[linearb]

I am only taking .25mg of Klonopin in the morning with 100mg of Gabapentin, and then another 100mg of Gabapentin in afternoon and evening. I have been on and off of Klonopin several times without any issues weening down. I was never taking more than 1.5 mg a day. Adding the Gabapentin is what has changed. I also take 150mg of Elavil and 10mg of Seroquel at night to help sleep. Also doing TRT.

The kindling effect exists and some people are able to withdraw from benzos some number of times and then run into a wall. On the other hand, some people take them forever, or go on and off all the time and never seem to have problems. There are likely to be genetic factors we don't know about.

I don't have a source handy but I remember reading that people who were originally prescribed benzos for anxiety-related conditions, have an overall more difficult time withdrawing from them, than any other group. Because fear is directly connected to GABA, this makes a good deal of sense to me. I am someone who was, originally, the first time around in ~1998 or whatever, prescribed benzos because of a protracted and fairly bizarre anxiety state. If you don't have that background and tinnitus is your only problem full stop, we're probably in very different situations.

Good luck finding something that works well for you and hopefully is sustainable!

 

[T Toledo OH]

The kindling effect exists and some people are able to withdraw from benzos some number of times and then run into a wall. On the other hand, some people take them forever, or go on and off all the time and never seem to have problems. There are likely to be genetic factors we don't know about.

I don't have a source handy but I remember reading that people who were originally prescribed benzos for anxiety-related conditions, have an overall more difficult time withdrawing from them, than any other group. Because fear is directly connected to GABA, this makes a good deal of sense to me. I am someone who was, originally, the first time around in ~1998 or whatever, prescribed benzos because of a protracted and fairly bizarre anxiety state. If you don't have that background and tinnitus is your only problem full stop, we're probably in very different situations.

Good luck finding something that works well for you and hopefully is sustainable!

May I ask what is your daily dosage of the Gabapentin and Klonopin?

I do have anxiety disorder and I was on Klonopin for several months about 10 years ago for irritable bowel. That passed and I did not touch them until tinnitus hit me 10 months ago. I never exceeded 1.5mg of Klonopin a day and now weened down to .25mg a day but now back to .5mg of Klonopin a day with the Gabapentin. If I find no relief in the next few weeks I will abandon them both with a taper.

The small amount of Klonopin I was on really doesn't seem to do anything anymore on its own.

 

[linearb]

May I ask what is your daily dosage of the Gabapentin and Klonopin?
...
The small amount of Klonopin I was on really doesn't seem to do anything anymore on its own.

2mg of Klonopin & 600-900mg of Gabapentin.

Doses under 1mg of Klonopin didn't seem to do much at all.

 

[T Toledo OH]

2mg of Klonopin & 600-900mg of Gabapentin.

Doses under 1mg of Klonopin didn't seem to do much at all.

I just started 300 mg Gabapentin twice a day with 0.25 mg Klonopin twice a day. Seems to help. Hopefully I will habituate before they lose effectiveness.

 

[linearb]

I just started 300 mg Gabapentin twice a day with 0.25 mg Klonopin twice a day. Seems to help. Hopefully I will habituate before they lose effectiveness.

Didn't work for me, but, they also haven't lost effectiveness years later.

I'm taking 8x as much Klonopin as you, though

 

[T Toledo OH]

Didn't work for me, but, they also haven't lost effectiveness years later.

I'm taking 8x as much Klonopin as you, though

I am pretty certain if I increased the Klonopin I would have better results but scared to increase much more and doubt my GP would be ok that.

 

[linearb]

I am pretty certain if I increased the Klonopin I would have better results but scared to increase much more and doubt my GP would be ok that.

My GP is only okay with this dose because I was on it from 1999-2005.

 

[Michael Leigh]

Doses under 1mg of Klonopin didn't seem to do much at all.

This may be the case for some people but not for me. I was prescribed Clonazepam/Klonopin in 2010 and advised to only take it when the tinnitus is severe. Dosage 2x 0.5mg tablets, that will reduce it to a manageable level over 12 hours or complete silence. I take it once or twice a month for one or two days and then stop. I haven't had any problems with it over the years and still have it on prescription.

 

[linearb]

This may be the case for some people but not for me. I was prescribed Clonazepam/Klonopin in 2010 and advised to only take it when the tinnitus is severe. Dosage 2x 0.5mg tablets, that will reduce it to a manageable level over 12 hours or complete silence. I take it once or twice a month for one or two days and then stop. I haven't had any problems with it over the years and still have it on prescription.

Benzos are super unpredictable. After years of being on them and off them and posting too much about them on the internet -- more than almost any other class of drug I can think of, everyone seems to have their own reaction both in terms of how useful they are, and how difficult they are to withdraw from.

It's very hard to make general statements, but I will always wonder if having been scripted Klonopin at the same relatively high 2mg/day dose that I take now, during my late teens and early 20s, impacted my brain development in some way, in terms of how my nervous system functions with and without these drugs present.

I was abstinent from benzos and related drugs for years before I went back on, so I do not believe I was in some sort of protracted withdrawal which would eventually have self-corrected. Likewise, as much as I don't believe that tolerance from daily use has eliminated the benefit I get, it's diminished it, and also the side effects have certainly not been eliminated so there is a minor hit to my memory and gross motor skills.

I'm sorry that either of us has to use these drugs, but, I'm generally glad they exist. If people can avoid ever using them, that is probably optimal. Failing that, the sort of use pattern you have is generally a lot more sustainable and comes with much less of a cost, than the way I use Klonopin: if push comes to shove and you cannot take it anymore for some reason, you can simply walk away, only having to accept the loss of benefit. I'm looking at either an extended and still uncomfortable taper, or, coming off rapidly and dealing with possible neurological damage and certain short-term extreme suffering.

 

[KWC]

I just started 300 mg Gabapentin twice a day with 0.25 mg Klonopin twice a day. Seems to help. Hopefully I will habituate before they lose effectiveness.

Do you feel like you are still getting benefit from the Klonopin/Gabapentin combination?

 

[T Toledo OH]

I seem to be doing a bit better... intensity not as bad most days but too early to tell... mine changes a lot so I could just be having a mild week.

 

[KWC]

I seem to be doing a bit better... intensity not as bad most days but too early to tell... mine changes a lot so I could just be having a mild week.

@T Toledo OH, thanks. Keep us posted on your progress. Hope it works for you.

 

[T Toledo OH]

My GP is only okay with this dose because I was on it from 1999-2005.

I upped my dosage to .5mg Klonopin and 300mg of Gabapentin twice a day and actually the tinnitus has been worse. I wonder if I should just taper down and forget it or increase...

 

[KWC]

I upped my dosage to .5mg Klonopin and 300mg of Gabapentin twice a day and actually the tinnitus has been worse. I wonder if I should just taper down and forget it or increase...

What did you decide to do? I took a 300mg Gabapentin last night and my tinnitus seems much worse today and I have tingling/burning in my hands and feet.

KWC

 

[T Toledo OH]

What did you decide to do? I took a 300mg Gabapentin last night and my tinnitus seems much worse today and I have tingling/burning in my hands and feet.

KWC

I am probably going to get off the Gabapentin. The experiment failed. I am no better. I will just stay on Klonopin.

 

[Greg Sacramento]

I took a 300mg Gabapentin last night and my tinnitus seems much worse today

Been thinking about you Ken.

It may be that you have some peripheral neuropathy which can happen when we get older. Over half of those treated with Gabapentin will have some nerve pain relief, but may experience adverse effects such as tingling/burning in hands and feet before improvement. Walk around a bit after taking Gabapentin before going to bed. Unfortunately Gabapentin can mess with tinnitus. Like with me, it appears that you are nerve and vein sensitive - most likely there's family history. Your TMJ - jaw does appear to be nerve activated. It appears this started by fluid travel from sinuses. You have a deep mandibular plane, so any jaw trauma after previously resolved infection may be cause of TMJ. Improve circulation by walking and consider trying compression stockings while doing so.

 

[KWC]

I am probably going to get off the Gabapentin. The experiment failed. I am no better. I will just stay on Klonopin.

Does the Klonopin help your tinnitus any...?

I have not had any volume lowering benefit from Klonopin.