Tinnitus for 6 months now. So frustrated. Do you have it too?

I have had tinnitus for the entire five months I have been Klonopin free.  Have you experienced long term, chronic, tinnitus as well? During or after your taper?  I really need some support regarding this situation and to talk to some people who are dealing with this too.

 

FYI.... I can't fall asleep with music going or headphones on, so that doesn't seem to be an option for me. :-(

 

Below is a description of my tinnitus. 

 

Tinnitus- I have had constant ringing in my ears for 5 months now.  The ringing started during my last week of Valium and has not given me a moment of peace and quiet since then.  It doesn't seem to be dominate in one ear, and often I feel like it is more "in my head" than in my ears.  It is driving my out of my mind.  Sometimes I sit in bed at night and cry because I am so frustrated by how ridiculously loud it is and that it never goes away. It makes it very hard to fall asleep and hard to focus and concentrate.  I try to focus on other sounds and think of other things, but it inevitably demands my attention.  I often fantasize about beating my head to a pulp with a iron skillet because I am so frustrated by it.  I really worry it will be with me for the rest of my life and I can't imagine that. It is not acceptable.I believe the tinnitus is responsible for the derealization I am still feeling, as I only still feel that awful sensation when my tinnitus is bothering me the most which is when I am lying down or when it is quiet.  Yes, I can even hear it with the television on if I am lying down.  It is stealing what tiny bit of enjoyment I seem to be able to extract from life right now, it is exacerbating my already very severe depression, and is robbing me of peace and quiet.  From the research I have done I see that having tinnitus this far out is not very common; that tinnitus is still not understood well at all; and that no medication has been proven effective in treating it really except benzos that I can see, and taking a benzo to relieve this is NOT an option.  I am seeing an ENT doctor next month.  I am hoping TRT or a masker can bring me some relief.

Hi cc,

 

There have been several threads of discussion on tinnitus. Sorry to sound like a broken record, but if you could type tinnitus in the upper right and corner search box, you will find these discussions. I have not experienced this symptom but quite a few here do.

 

T2

Mine is more of a hissing/buzzing sound most of the time.  I started a thread on it when I got it after tapering:

 

http://www.benzobuddies.org/forum/index.php?topic=8987.0

Yeah, I know how to search.  It is just that I feel like a moron right now and am overwhelmed by it all.. hoping people will come to me with their stories.

I have it but I had it years before my thyroid went nuts and I was put on benzos. It is slowly getting back to my pre-hyperthyroid state. The volume fluctuates during the day but it is much quieter than it used to be. The closer I get to a euthyroid state the quieter it becomes.

 

If I remember correctly, I  believe Dr Ashton mentioned that tinnitus was the last symptom to disappear.

 

rufus

Hi crittercuddler...I'm in the same situation.  My tinnitus, which is severe, started about three months before the end of my Valium taper.  I've had it for almost four years now.  It was so severe, I reinstated.  This, of course, was a really bad move.  You can see from my signature what I went through next.

 

Some say you get used to it over time.  Maybe some do, but I haven't.  I don't believe anyone could get used tinnitus as loud as mine.  However, here I am four years later with no sign of skillet damage to my head or other parts.  It does get better, believe me.  You learn to cope, to take each day at a time and get through it as best you can.  Then you find that you get through some days better than others and you look forward to those.

 

Initially, I made MP3s of nature sounds for masking using programs such as Aire Freshener and Tinnitus Masker Pro.  These helped for a while, but I haven't used any masking sounds for 18 months now.  I also used audio books to help me sleep.  Harry Potter was very effective; I never did get beyond the first chapter.  Now, I fall asleep easily without any need for my MP3 player.

 

My tinnitus is not dominating my life any more.  I have learned to live with it, and I believe it will go away by itself someday. 

 

If TRT is an option for you, you should go for it.  But beware of the snake oil salesmen out there.  There are very few real TRT professionals around.  CBT (cognitive behavior therapy) combined with masking will probably be just as effective, more available and less expensive.

 

All the best,

 

Ed

Hi Critter as you know i have spoken to you before i suffer on a daily basis..ive just about tried everything to escape , but no luck ..ive spent thousands !!  some times i have a few quiteish days but then it comes back with a vengence ..i wish i had the answer for you and every one ..i feel the same way as you do about it ..mine is very loud and still makes my tummy turn over after many years...stress and anxiety will make it worse..its a vicious circle ..i wish you better days ahead Micky ..

Hi crittercuddler...I'm in the same situation.  My tinnitus, which is severe, started about three months before the end of my Valium taper.  I've had it for almost four years now.  It was so severe, I reinstated.  This, of course, was a really bad move.  You can see from my signature what I went through next.

 

Some say you get used to it over time.  Maybe some do, but I haven't.  I don't believe anyone could get used tinnitus as loud as mine.  However, here I am four years later with no sign of skillet damage to my head or other parts.  It does get better, believe me.  You learn to cope, to take each day at a time and get through it as best you can.  Then you find that you get through some days better than others and you look forward to those.

 

Initially, I made MP3s of nature sounds for masking using programs such as Aire Freshener and Tinnitus Masker Pro.  These helped for a while, but I haven't used any masking sounds for 18 months now.  I also used audio books to help me sleep.  Harry Potter was very effective; I never did get beyond the first chapter.  Now, I fall asleep easily without any need for my MP3 player.

 

My tinnitus is not dominating my life any more.  I have learned to live with it, and I believe it will go away by itself someday. 

 

If TRT is an option for you, you should go for it.  But beware of the snake oil salesmen out there.  There are very few real TRT professionals around.  CBT (cognitive behavior therapy) combined with masking will probably be just as effective, more available and less expensive.

 

All the best,

 

Ed

Thanks for posting this, Ed.  I developed tinnitus a few weeks after tapering and keep waiting for it to disappear.  I guess I'd better take some action instead.  I have been listening to audiobooks (Harry Potter  ) or rain sounds at night but will look into the programs you mentioned as well.  It is encouraging to know that I can learn to live with it in time. 

Hi

I wasnt going to answer,because I didnt want to discourge you, as I have had tinnitus for 2 years. As you know you get tested and they say of course you have T because you have hearing deficit at X decibels. No one believes you when you say but I never had it before stopping (x) benzo. I wish I had a cure but I dont, its discouraging , but I guess you just move on, I'm sure you've searched the web and tried everything, ginko seemed to help me for a bit.

I've read that some people have it for years and it goes away. I firmly believe that the stress imposed on the system from stopping benzos is why it started. I hope it ends for all of us

Take care

Bobers

 

Rufus- Thank you for sharing your experience with me.  I am glad it has become quieter for you.  I have had my thyroid checked several times and it is fine, not borderline either.  I didn't know that Prof. Ashton said tinnitus is one of the last things to go away. I remember she has a chart that breaks down symptoms and how long they can last, perhaps it is lumped in there somewhere.  I know she does suggest to you that if your tinnitus persists that you should get it checked out (In Chapter 3 of the Ashton Manual) here is the link http://www.benzo.org.uk/manual/bzcha03.htm#27 and here is the excerpt below:

 

E. Perceptual and Motor Symptoms

 

A variety of perceptual and motor symptoms are characteristic of benzodiazepine withdrawal (Table 1). These usually subside during the acute withdrawal phase, but may sometimes be prolonged.

 

Sensory and motor disturbances. There is no doubt that benzodiazepine withdrawal leaves in its wake a nervous system that is exquisitely sensitive to all sensory and motor stimuli. Usually this state settles in a few weeks but occasionally disturbing sensations persist.

 

One of the most distressing sensory symptoms is tinnitus, a constant ringing or hissing in the ears which has been noted in several studies of benzodiazepine withdrawal. One lady described her tinnitus as a "needle of sound" piercing deep inside her head. Tinnitus is often associated with a degree of hearing loss and is not uncommon in people with partial nerve deafness who have never taken benzodiazepines. Nevertheless, it often makes its first appearance during benzodiazepine withdrawal in people who have had hearing loss for years. Also, it may be unilateral or precisely localised, even in those with symmetrical bilateral hearing loss. Whether people who have taken long-term benzodiazepines are particularly prone to tinnitus and if so why, is not known. It can persist for years and does not always respond to the usual treatments for tinnitus (maskers, etc); nor is it always relieved by restarting benzodiazepines. However, people with persisting tinnitus after withdrawal should seek the advice of a hearing specialist and may be lucky enough to find a clinic which specialises in this symptom.

 

I also found the following from this website, http://www.benzo.org.uk/pha-1.htm, which is also from Prof. Ashton.

 

1. Tinnitus. Tinnitus may initially result from generalised sensory hypersensitivity seen in early withdrawal, but may persist after the symptoms have disappeared. Busto et al.(43) describe two cases of tinnitus persisting for 6 and 12 months after benzodiazepine withdrawal, and they mention a third patient who was unable to withdraw because of severe tinnitus at each attempt. Ashton(1) reported four cases of intractable unilateral or bilateral tinnitus first appearing during benzodiazepine withdrawal and persisting over several years. Three of these patients had symmetrical bilateral hearing defects, which may have been a causative or aggravating factor. Other case reports have appeared sporadically in the literature. Tinnitus, which is often experienced as being precisely localised, can reach almost intolerable levels. One patient described her tinnitus as "a needle of sound" piercing somewhere deep inside her head. 

 

 

Ed- (Lexofree)- Thank you so much for sharing your experience with me and what has worked for you.  I have thoughts (JUST THOUGHTS!!!!) sometimes of reinstating in order to get the tinnitus to stop.  I read a study where a man did that.  His tinnitus was so severe when tapering off of Valium that he reinstated.  It is not an option though.  I will never, ever, put a benzodiazepine in my body again, and I am sure you agree and share my conviction. It does make me mad though that the very medicine that thrust me into this hell could also paradoxically bring me relief from this disabling symptom.  It makes me so mad.  It is hard to not be angry with myself as well because I can't shake the feeling that I have caused this suffering of my own accord.  I know I am not completely to blame... I mean who doesn't want to trust their doctor?  I just can't believe that this is the price I am going to pay for taking that medication... perhaps for the rest of my life.  It is so incredibly depressing and anger provoking.  I have learned a lot from this experience, including that I have to play the role of patient advocate for myself even when a medicine that I am taking seems to not be causing me any ill effects. I HAVE to research it anyhow.  I have also learned that I have to question the training and competence of my doctors, always.  It is sad, but true... and necessary. Perhaps we have been socialized to expect too much from our doctors.

 

It is hard for me to imagine that I could ever learn to cope with it and lead a joyful life, being as loud as it is a lot of the time.  I have a tendency to obsess about things already from having OCD, so I am sure that is contributing to the difficult time I am having adjusting to this or believing that I could ever feel normal despite the fact that I have it.  It is very depressing... I long to hear silence again... sweet silence.  I have a little alarm going off in my ears all the time that I did not ask for and I don't want it!

 

I hope with therapy I can learn to cope like you say... and that a day will come that I don't think about it.  That is great that you can fall asleep now without any help! I need to go get my radio from our old house so I can try listening to music that way while trying to fall asleep.  I just can't do it with earphones on.

 

Thanks for the encouragement and suggestions, oh, and especially for the heads up about the TRT.

...stress and anxiety will make it worse..its a vicious circle ..i wish you better days ahead Micky ..

 

Thank you Micky.  I wish you better days ahead with it as well. They are getting closer to understanding the difference between the brains of people with tinnitus and those without it... so maybe in our lifetime they can come up with an effective treatment.

 

I do notice that stress makes mine MUCH LOUDER as well.  It just becomes unbearable when I get really stressed.  It's awful. I just lie in bed and use every ounce of my will power to not beat my head. UGH.

Hi

I wasnt going to answer,because I didnt want to discourge you, as I have had tinnitus for 2 years. As you know you get tested and they say of course you have T because you have hearing deficit at X decibels. No one believes you when you say but I never had it before stopping (x) benzo. I wish I had a cure but I dont, its discouraging , but I guess you just move on, I'm sure you've searched the web and tried everything, ginko seemed to help me for a bit.

I've read that some people have it for years and it goes away. I firmly believe that the stress imposed on the system from stopping benzos is why it started. I hope it ends for all of us

Take care

Bobers

 

  Bobers- I too know that in my case the tinnitus is from my use of a benzodiazepine.  I didn't ever have a problem with it before then.  I am also young and I don't hardly ever partake in activities that might damage my hearing (like concerts).

 

  I am going to an ENT on December 1st and we will see how knowledgeable he is about benzos and tinnitus.  I am planning on bringing copies of research articles I have to give to him just in case he isn't.  If he doesn't know much about this I will then seek out a professional through the ATA. You can call them and get the names of doctors who express an interest in helping those with tinnitus.

 

  I have been taking gingko biloba for over a week now and have not noticed a difference.  I have also started taking Magnesium and have not noticed a difference from it either.  Yes, I have been doing lots of research.

 

  I appreciate you being honest with me and the others who will read this.  We need people to be honest with us about this so that we don't feel alone.  It won't do us any favors if someone sugarcoats their experience.  Keep telling it how it is.

Recover08-

 

    Thank you very much for your input.  It is encouraging to hear from others who have had tinnitus for many years and have learned to live a fulfilling life despite it.  I am glad that it doesn't bother me so much during the day. I should be thankful for that.

 

    I am going to an ENT on December 1st.  We will see how it goes.  I'll let y'all know.

Hi

I sincerely hope you find an ENT that is knowledgeable about Benzos, in my case the ENT I went to disregarded my insistence about benzos being the initiator of my T, in fact there is a study that says AD's are an acceptable treatment for T and rattled off depression as a T initiator. I only tell you this to be prepared and not to get frustrated if you hear this explanation. There is very little knowledge about bad benzo reactions in the medical field, probably because in reality so few of us respond as negatively as most people. The first medical reaction is WE are addicts, when in truth we would "sell the farm" to get off of benzos.

Take care

Bobbers

I've read where some experts believe that tinnitus is a result of needing to retrain the hearing mechanism, that somehow it has gotten too sensitive. I'm not sure about that but I do know that two things have helped me-- whistling reduces the tinnitus for a bit, and listening to the radio. Not loud enough to drown out the tinnitus but still enough to make me pay attention to the music rather than the tinnitus.

 

My tinnitus is a lot less than it was a year ago. There is hope.

 

rufus

Oh my goodness!  I am sooooo happy to have just discovered that I live near a Tinnitus Clinic, where they practice TRT (Tinnitus Retraining Therapy) under the Dr. Pawell Jastreboff model.  I feel so fortunate because from what I understand not many clinicians are formally trained in the technique.

 

It is interesting too, to note that I have been inside this clinic at another point in my life!  My nursing school was right across the parking lot from this clinic and I used to go over there and eat lunch sometimes in their cafeteria (they have a day program for deaf children).  Small world.  Wow.

 

After I get my official exam by an ENT/Audiologis I am going to look into starting TRT therapy at the Callier Center.  Here is the link in case anyone lives in the DFW, Texas area...

 

http://www.callier.utdallas.edu/tinnitus.html.

 

Also, I learned a lot about tinnitus and TRT from this website today as well-

 

http://www.tinnitus.org/

 

If I am understanding the concept of TRT correctly, then using a masker would be contraindicated.  Anything that completely masks the tinnitus will not allow for habituation which is an important principle in the theory of TRT.  Well, hmmm!

Here is a link to the online accesible version of THE BOOK on TRT, written by By Pawel J. Jastreboff, Jonathan W. P. Hazell.

 

http://books.google.com/books?id=uyv39bcdWCYC&pg=PA118&lpg=PA118&dq=Wearable+Sound+Generators&source=web&ots=Sfxe2DObhU&sig=poXU5mR_Jaty4LhqD4gd1PnjdIA&hl=en&sa=X&oi=book_result&resnum=4&ct=result#PPA116,M1

 

I think everyone will find the information in the book very helpful, as you can browse topics related to tinnitus that are frequently discussed on this forum.  You can't access every page online, but you can read some of it.

 

 

Oh my goodness!  I am sooooo happy to have just discovered that I live near a Tinnitus Clinic, where they practice TRT (Tinnitus Retraining Therapy) under the Dr. Pawell Jastreboff model.  I feel so fortunate because from what I understand not many clinicians are formally trained in the technique.

 

It is interesting too, to note that I have been inside this clinic at another point in my life!  My nursing school was right across the parking lot from this clinic and I used to go over there and eat lunch sometimes in their cafeteria (they have a day program for deaf children).  Small world.  Wow.

 

After I get my official exam by an ENT/Audiologis I am going to look into starting TRT therapy at the Callier Center.  Here is the link in case anyone lives in the DFW, Texas area...

 

http://www.callier.utdallas.edu/tinnitus.html.

 

Also, I learned a lot about tinnitus and TRT from this website today as well-

 

http://www.tinnitus.org/

 

If I am understanding the concept of TRT correctly, then using a masker would be contraindicated.  Anything that completely masks the tinnitus will not allow for habituation which is an important principle in the theory of TRT.  Well, hmmm!

I'm so glad for you!  You are very lucky.  The closest TRT place to me is 300 miles.    Thanks you for those links, too.  Did you know the book you provided the link to is nearly $100!  If I knew it would alleviate the distress of tinnitus, I'd find a way to buy it but it's a bit much for a mere book to do IMO.  Anyway, I wish you good luck with the TRT and hope you will come back and tell us about how well it is working for you.

Hi,

I also have had tinnitus. I've had it mildly before benzos. Now it is extremely loud and it is always that way. I due notice it goes up and down a little. It gets so loud I can't hear people talking. I'm going to try accupunture, after I buy all my x-mas gifts. Hopefully that will work. Good luck on what you are trying. Kel

 

I'm so glad for you!  You are very lucky.  The closest TRT place to me is 300 miles.    Thanks you for those links, too.  Did you know the book you provided the link to is nearly $100!  If I knew it would alleviate the distress of tinnitus, I'd find a way to buy it but it's a bit much for a mere book to do IMO.  Anyway, I wish you good luck with the TRT and hope you will come back and tell us about how well it is working for you.

 

No, I didn't know it was 100.00.  I believe though that book is intended as a resource for treatment providers rather than a guided book for patients.  I am sure though that reading it and learning the techniques yourself could be useful, and if you don't have a TRT professional in your area I guess that would be the next best option.

 

People were speaking highly of this book on the Tinnitus Support Message Board,

 

Tinnitus: A Self-Management Guide for the

Ringing in Your Ears by Jane L. Henry and Peter H. Wilson (Paperback - Jun 13, 2001).

 

This book is supposed to guide you through cognitive therapy lessons to help you habituate to your tinnitus.

 

Also, here is the link to success stories on the Tinnitus Support Message Board.  There is a story on there from a recovered benzo user, that was nice to read.  It is the post by griffis20.

 

http://tinnitussupport92262.yuku.com/forums/3?page=1

 

http://tinnitussupport92262.yuku.com/forums/3?page=1

 

 

I will definitely let you all know how everything is going.    While feeling more hopeful than I did earlier this week regarding the tinnitus I am still very worried and concerned if it will ever be better for me.  The last two nights I have tried to sleep with relaxing music and the other night with the radio tuned between stations.  Neither went well.  I feel asleep a little bit but I kept waking up and the sleep quality was horrid. Ugh. It concerns me because I know I will have to be able to learn to sleep with the WSG's on or some other acceptable sound enrichment under the TRT method.  I hope I can do it. I do get discouraged so easily.

Hi,

I also have had tinnitus. I've had it mildly before benzos. Now it is extremely loud and it is always that way. I due notice it goes up and down a little. It gets so loud I can't hear people talking. I'm going to try accupunture, after I buy all my x-mas gifts. Hopefully that will work. Good luck on what you are trying. Kel

 

I am sorry you have tinnitus too and that it is loud.  It sounds really loud if it keeps you from hearing people talk.  I am so sorry.    Your signature says you are doing great though and I am assuming that is with tinnitus included, so it seems like you are dealing. You should check out some of the links I posted.

 

Let us know how acupuncture goes!

 

  Update- I went to the ENT doctor today.  We discussed my tinnitus and then I had a hearing test and tympanometry (where they measure how your ear responds to pressure).  My hearing test came back normal, so they could not blame it on "hearing loss at high frequency". I was glad for that.  The doctor was not familiar AT ALL about benzodiazepines and their dangers. He kept asking me if I was taking something now for my anxiety.  He seemed more concerned about my anxiety disorder than my tinnitus. I suppose he thought if I was less anxious it would bother me less. Whatever.  He didn't even bring up TRT or Neuromonics and when I brought it up myself he said that they "sometimes can be helpful to those whose tinnitus is a serious problem to them " or something along that order. 

 

I am not suprised by my visit with the ENT today. I figured he wouldn't know much about it and that my tests would come back normal. It was just a formality that I went. They say you should get basic testing done if you have tinnitus for a long time.

 

It is CRAZY how much healthcare costs.    It was 218.00 just for him to stick a tongue depressor in my mouth and quickly inspect my nose and ears. It was 100.00 for the hearing test and 50 for the tympanometry.

 

Oh, great news, I found the book by Henry and Wilson at my local used book store for 8 bucks.  A far cry from the outrageous prices they are asking online for it since it has gone out of print.

I have bad Tinnitus and what I do at night is turn on my box fan in my bedroom on high, and it helps because the noise from the fan cuts out the ringing.

 

Good luck,

Michael

 

 

It is incredibly difficult for me to fall asleep with any noise beside the gentle rush of air from a ceiling fan.  I have been trying to sleep with a sound generator with little success at any volume loud enough to give me some relief.  I don't think I could sleep with a box fan on, although it would be great if I could. I suppose I could give it a try.  In the past I haven't been able to, but who knows.

 

Thanks for the suggestion.