Tenacious Tinnitus Club – Ear Pressure, Noise and Hyperacusis

[[ca...]]

Birdman, i got the T bit while i believe i was in Tolance W/D while on Klonopin and a few other nasty S/X `s is why i wanted to get off it but since coming off well almost off the K the T has gotten pretty bad so.... W/D S/X or not i say yeppers ! ~CD

[[pe...]]

I am starting to develop some theories about this. The trouble begins when this threshold shifts. We’ve all been to a loud concert or ballgame and left with our ears ringing. Now imagine if that sound never left, and kept intensifying. A relentless little demon, tinnitus announces itself in the ears but frequently extends its residence to the spirit, where it can have debilitating emotional effects. It can, quite literally, drive one crazy.  It's a spiritual thing too.  We give it all the power and it deserves none, maybe it's just that simple.

 

Amen!  For some people, it can definitely have devastating emotional and spiritual consequences.

 

PD?  Is your tinnitus getting better or are you just getting more used to it?  For me at this point that question is turning into more of a guessing game.  I do not think I am healing any more but I am beginning to deal with it and ignore it more.  I'm at the "crossroads" healing point right now I think they call it.  It's that point where you do not think about feeling sick all the time and one or two hours slips by without thinking about sxs,  it's nice

 

Wishing you continued healing PD 

 

Thanks so much birdman!  I think I am getting used to my tinnitus, but at the same time it is definitely getting better.  I never thought it would be possible to be at this point.  Yes, I agree, I find that there are some times that I don't even notice the tinnitus.  Whereas before, I was constantly focusing on it.  I'm not exaggerating when I say that at one time it was completely debilitating for me.  I have a lot of empathy and compassion for anyone that goes through this.  It is especially tough with tinnitus, because it is an invisible symptom that doesn't cause pain, etc.  So other people just don't understand.  Yet it can cause just as much suffering in a different way.

 

I wish you much comfort and healing also... 

 

Love,

 

PD 

[[Er...]]

B Money:

 

I really feel for you, mine has been bad and it's been a roller coaster of symptoms lately but after (over a 2 week stretch) mild exercise for 20 minutes a day, acupuncture reiki and this new neurostim last week at my Dr's I had a bit of a window today.  Dang I have a lot of appointments. 

 

There was a long stretch you gotta push through of 2nd guessing if it's getting better or if you're getting used to it - I had a lot of those thoughts for a while - probably month 2 to 4 after my c/t.  Hang in there and do you have maskers or trts?  Those saved my behind. 

 

The really tough part for me and probably a lot of us is there's no pattern and not much helps when it's strongest.  Mine changes in tone, strength and pattern weekly or every 10 days and has since the first 2 weeks of its onset. 

 

I'm thinking of you a lot and want to pass good vibes on to you, I think about us all a lot. 

 

Hang in there!

 

 

[[Wo...]]

Hey folks. I just wrote a whole long question and lost it before I could post, so I'll make it quick. Does anyone else here have pulsatile tinnitus, and do you have any thoughts or advice for me? I get it in my right ear mostly when I lay down for bed and upon waking in the AM. Thanks.

[[mo...]]

Hi Wondernova,

 

Since your long version disappeared into the void (don't you just hate when that happens?!) I am assuming you have been to the doctor and had pulsatile tinnitus professionally diagnosed? Although hearing your heart beat or the whooshing of blood in your ears is generally benign, it is my understanding that there are some instances where this is a symptom of other conditions that really should be checked out. A good Ear Nose and Throat doc, or a Neurologist might also be able to give you some help with the symptoms.

 

If you know from medical diagnosis that yours is benign, the only advice I can offer is that I got used to mine and it that it comes and goes. Since I had it before my benzo w/d I don't associate it with benzo use and have had for quite some time. I did develop inner ear myoclonus (a spasm of a muscle in the inner ear) that sounds like a bird or an insect is flapping it's wings and trying to get out of my ear, which is annoying and odd, but I mostly notice that right after a cut and it only lasts a few days. When it gets to me I put on the headphones and listen to something else...

 

Hopefully someone else will chime in here with some ideas for you!

 

Best,

 

Mo

[[Wo...]]

Thanks for the reply mosart. Sorry you have this stuff too. The myoclonus sounds annoying. I've had both ringing and the pulsatile T before benzos too. Both went away while I was on Klon. The ringing doesn't bother me so much because I'm used to it. The pulsatile freaked me out cause it just came back worse than ever at about 6 months out. It does seem to back off when I'm not focused on it though so I think that's my clue. I think I'll get it checked out just to be safe, but at this point my docs are rather sick of me.

 

Since I'm new to the group, a little background: I first noticed ringing in both ears about 5-6 years ago. I'm a musician and was playing in rock bands so I freaked out and went to the doc right away. Tests showed I have no hearing damage, but no explanation for the T. I was put on benzos for panic/anxiety, but the T went away too, so it must be nervous system related. So far I have no methods for relief or any idea how or why it comes and goes. All I know is it's worse in waves for sure.

 

I look forward to reading everyone's tips and advice, and I hope we all get relief from this asap. Take care.

[[mo...]]

I think I'll get it checked out just to be safe, but at this point my docs are rather sick of me.

 

Wondernova - I know exactly what it is like to feel as if your docs are sick of you, but having worked in the medical profession I have decided that this is really THEIR problem and you just have to hang in there and advocate for yourself. I would think that if you tell your doc that you are having sxs of Pulsatile Tinnitus, which is a very distinctive form of tinnitus, and you have not already had this checked out by a specialist, that your doc would get right on that. From my understanding of the condition, it is important to have someone check you out just to be on the safe side. In addition, there are supposedly things that can be tried to help your sxs such as TRT, relaxation exercises, sound therapy, etc., which you might want to try, but you would want to see a specialist for this. In case you haven't seen this, here is a link that might be helpful to you:

 

http://www.tinnitus.org.uk/pulsatile-tinnitus

 

As you are a musician, I can imagine that this must be especially difficult to deal with so here's hoping you get some relief soon!

 

Best,

 

Mo

[[Wo...]]

Thanks For the info! Very helpful. I'm going to email my doc soon.

[[li...]]

Hi there, I am quite new to the Forum and I've got some questions and I would appreciate if someone could give me some good advise:

 

10 Years ago a docter prescribed clonazepam (klonopin) because of my tinnitus (started in the 80-s because of acoustic trauma) . Until a year ago I took 0.5 mg clonazepam a day and I was  (kind-off) all right. My tinnitus was bad but I could still function as a private guitar teacher and I did have a social live. I tapered very very slowly. Now I'm on 0.43 mg a day (since beginning of december) and my tinnitus makes it impossible to work or do anything socially. Hyperacusis all the time. Can't stand the sound of my guitar.

 

Suppose I go back to 0.5 mg; - will my tinnitus go back to "normal"?

- If I stay on 0.43 how long should it take before things get back to normal again?

Has anybody got any experiences??

 

[Guest [...]]

Lion26,Welcome!I wish I could help you,but I got very bad tinnitus from taking benzos.I never had it pre benzos.Im now off them,but still have tinnitus at almost 10 months off Lorazapam.I hope it goes away for both of us!

[[Er...]]

Hi there, I am quite new to the Forum and I've got some questions and I would appreciate if someone could give me some good advise:

 

10 Years ago a docter prescribed clonazepam (klonopin) because of my tinnitus (started in the 80-s because of acoustic trauma) . Until a year ago I took 0.5 mg clonazepam a day and I was  (kind-off) all right. My tinnitus was bad but I could still function as a private guitar teacher and I did have a social live. I tapered very very slowly. Now I'm on 0.43 mg a day (since beginning of december) and my tinnitus makes it impossible to work or do anything socially. Hyperacusis all the time. Can't stand the sound of my guitar.

 

Suppose I go back to 0.5 mg; - will my tinnitus go back to "normal"?

- If I stay on 0.43 how long should it take before things get back to normal again?

Has anybody got any experiences??

 

I have a question for you, Lion.  Does your T feel or sound different from your post trauma T?  If so I think it would be worth contacting your Dr about a Valium taper since it seems that Tinnitus is reactive to changes in your levels of benzos if it's anything like mine and I would say from my experience with other folks on this board. 

[[li...]]

Dear Eric,

 

Before 2012 my tinnitus was a constant sound in my head which only got louder in reaction to sound/noise. It started in 1984 with an acoustic trauma and very slowly, over the years got louder and louder. In 2005 I was desperate and a docter prescribed clonazepam.

 

In 2012 I started to taper and I got this 5 day cycle: first day is terrible, I wake up in the morning with an explosion of tinnitus in my head; 2d day a bit better; etc and the last day is okay. Then it starts all over again. This started the moment I took the first step (from 1 to 0.95 mg). From summer 2012 till 2014 I've been on 0.5 mg and things haven't improved: after 2 years till this 5 days cycle.

 

So yes, the  tinnitus that I have now has a different character than the post-trauma tinnitus. But the real change came when i started tapering.

[[li...]]

And maybe I should add that the Doctor I visited in 2005 is not a local Doctor but one of specialists in the world in the field of tinnitus, related to an academic hospital. Isn't it strange that this Doctor prescribes clonazepam? Which eventually seems to produce more tinnitus the moment you start to withdraw from it?

 

And I read the Ashley manuals and there was also a bit about a man who couldn't make the shift from clonazepam to valium. It resulted in more tinnitus. So apparently for some (and maybe also for me) clonazepam does suppress the tinnitus.

 

 

 

 

[[Dr...]]

Sorry to ask anything here but I am curious about something. Somebody brought a box of "Ring Relief" fast dissolving tablets over to me thinking they would help. They even tried to shove a pill into my mouth. Naturally, I put a stop to that. After being screwed by a "doctor" with the clonazepam bit there is no way I'm ever just going to swallow anything again without research first. Even then I'm going to be very wary.

 

So I did look it up. The first few words from the company let me know right off the bat that they had no idea what they were talking about. They wrote about the problem in the "ears". Never mentioning that tinnitus is a problem in the brain. Etc, etc...

 

However I would still like to ask if anyone here has ever tried this "Ring Relief" stuff.

 

Thank you

Dream

[[Er...]]

Dear Eric,

 

Before 2012 my tinnitus was a constant sound in my head which only got louder in reaction to sound/noise. It started in 1984 with an acoustic trauma and very slowly, over the years got louder and louder. In 2005 I was desperate and a docter prescribed clonazepam.

 

In 2012 I started to taper and I got this 5 day cycle: first day is terrible, I wake up in the morning with an explosion of tinnitus in my head; 2d day a bit better; etc and the last day is okay. Then it starts all over again. This started the moment I took the first step (from 1 to 0.95 mg). From summer 2012 till 2014 I've been on 0.5 mg and things haven't improved: after 2 years till this 5 days cycle.

 

So yes, the  tinnitus that I have now has a different character than the post-trauma tinnitus. But the real change came when i started tapering.

 

Lion:

 

I think that my T gets better every month but I can't judge it day to day or even week to week.  I c't'd so that may not help you much.  Are there any Ashton taper friendly docs in your area?  I think there is a list on these board somewhere. 

[[li...]]

Dear Eric, I don't think so. I live outside of England and docters here are less familiar with Ashton. Last one I saw advised me to go from 1 mg to 0,5 in 1 step. "Then you're making some progression".

[[Er...]]

Lion:

 

Have you tried this thread on these boards?

http://www.benzobuddies.org/forum/index.php?topic=26129.msg394562#msg394562

 

[[Bi...]]

A pill that can stop tinnitus is in trails now.  Trouble making protein identified.

 

http://www.dailymail.co.uk/health/article-2956195/Pill-stop-hearing-loss-tinnitus-tested.html

[[ca...]]

Was given a sample of this stuff from a ENT Doc who himself suffers from Tinitus i have not tried it but he swears by it and this Doc was from N.Y.U.  Google it  LIPO-FLAVONOID Plus ~CD

[[pr...]]

Bird,

 

are you still taking the amiptrip? i had tried 10mg once again because i had 5 nights of no sleep -- it didn't help me sleep and made me too sedated. my pdoc is actually interested in having me try "tiny doses" of flumazenil -- do you know anything about that med? let me know if the amiptrip is working for you? -- i was interested in using it, but i don't think i will, makes my brain float around too much. literally made my brain undulate forward and back to where i couldn't sleep for the life of me.

[[Bi...]]

Bird,

 

are you still taking the amiptrip? i had tried 10mg once again because i had 5 nights of no sleep -- it didn't help me sleep and made me too sedated. my pdoc is actually interested in having me try "tiny doses" of flumazenil -- do you know anything about that med? let me know if the amiptrip is working for you? -- i was interested in using it, but i don't think i will, makes my brain float around too much. literally made my brain undulate forward and back to where i couldn't sleep for the life of me.

 

Hi Pretty,

 

Here's my final med regime I settled on after testing 132 meds.

 

Amytrip - 25mg at bedtime.

Remeron - 15mg at bedtime

Gabapentin - 300mg at bed time.

 

My healing almost 98% done and even the tinnitus has been eradicated for the most part.  I am a very happy girl these days and I really had my doubts it could go this well for me.  I still have to taper the support meds or just stay on them for life and I'm OK with that too.  I'm just happy the nightmare is finally over for me.  It does end after all and I'm the old me again

 

I also did some very unorthodox 'drug things' which are too controversial for open forum viewing called 'gabiniod bombing' (Occasional High Dosing),,, don't even ask about my high dose levels, ridiculous   but it worked out great for me! Felt the healing power coming on quick after the "bomb" treatments the addiction doc had me do. I file this under 'highly controversial' with a triple mouth zipper  :-X

 

Everything started going better ever since I started the Amytrip too and it was a big turning point for me but it takes a few months of treatment, or I could just be healing, I did so much 'stuff' it's hard to point to any one winning strategy now but I AM DONE!  YIPPY!!!  In any case I am writing my success story as it's time now (more like a success novel  )

 

Slow tapering is still 'king' in my book and the cornerstone of healing.

 

 

I also really believe in the modulation exercises too.

 

SEE  http://www.livestrong.com/article/339659-jaw-exercises-for-tinnitus/

 

Max Opening

Open your mouth as wide as possible, then with your hand on your chin, pull your mouth open even wider. Hold the position for 30 seconds. As with all jaw exercises, don't do this if you're feeling pain--expect to feel pressure during exercises but stop if you feel pain or real discomfort. Repeat  all day long,  month after month and you will heal like me

 

Assisted Opening

Assisted opening works much like the max opening exercise. Open your mouth, then hook two fingers over your lower front teeth. Pull your mouth open even wider and hold for a few seconds. Repeat 100 times per day.

 

THIS BIRD IS HEALED (we all heal given enough time)   

 

Take care pretty 

 

P.S.  How my soul feels 

 

 

 

 

 

[[pr...]]

that's great Bird! and yes, the only way off the benzo's is a slow taper.

[[Bi...]]

Hi everyone. I'm yet in another tinnitus free window. 

Now getting longer and longer with each passing week.

If I can heal anyone can since my tinnitus was of epic magnitude complete with bleeding ears!

I still have light tinnitus but it's at tolerable levels now

32 months and 24 days, what a LONG haul it has been!

I'm amazed and relieved at the same time.

It does get better so never lose the faith people 

[[...]]

Great to see you doing so well Birdie

Bart

[[mi...]]

Hi Birdie....

 

I do not come on here much anymore......but jeez I am happy to read about you feeling so much better......are you under the tree hearing the wind and the birds? Hope so....

 

My t is gone now

 

Take care Birdie....minnie :smitten: :smitten: