Curing Tinnitus ...

That's great to hear that your tinnitus requires no effort or anything. Mine definitely gets my attention still. It doesn't necessarily bother me, but if I hear it, I definitely think about it. And if it gets loud, I will usually do something like listen to music. So it's not driving me insane, but it definitely can get annoying. I also think mine is better now than it was at the very beginning of when I first had it... at least I think it is... either that or I'm just getting better at handling things.

 

Sigh!!! Yeah well, it's a pity but I think that there is a "semantic" issue in this conversation getting in the way of figuring out how to deal or help with, certainly, my type of tinnitus...which is a main reason for being on this site, right? Maybe my ex-Brit language is just different and too out there or something.

OK, I think there is a misunderstanding here and it is probably one that a lot of us tinnitus folks have to come to grips with...The difference between SUFFERING and LOSS. It is pretty core stuff.

Here I quote from Stephen's main premise: "If you get to the point where you don't care, then there is no need to control anything." This is indeed the core of successful adaption or habituation. I have no truck with, or different viewpoint on that. 100% agreed!
Getting to this point is indeed highly possible, and most of us (and the millions of others out there that 'never mention or complain about their tinnitus') are perfect examples of it. Wunderbar! I got there three times in 58 years, so I know this place.

Yes, en route to adaption there is inevitably some suffering and loss. Just look at how most of us freak out and panic at the beginning with tinnitus and feel our lives are over, or whatever...Then some years later we are not really that inhibited and living almost normal lives. Being smart about loud sound avoidance helps. Likewise numerous therapies. Etc., etc. Yeah even TRT for those who can afford it and benefit from it. *[And I beg to differ about me being on thin ice if I have never been in a TRT clinic and as if that invalidates everything I have ever learned and experienced about tinnitus, or those who advised me not to do TRT at the time...(Audiologists' websites given in confidence, if you doubt me)...But I will drop this as it is a petty distraction].

So, once we get over the initial suffering and loss, get our lives back, all is more or less well...until we get MORE tinnitus at louder volume. Now it is not just audible in the quiet but in most normal environments. Uh, OK, we go through the whole process again and eventually get to Stephen's place once more. Excellent!

Then it happens again....but now the screeching is above ALL other sounds AND there is "pain" involved. BIG DIFFERENCE, and I'm not sure how many people have this kind of tinnitus on this board, but the "kick in the kidneys" analogy that Stephen seems to not give credence to is a reality for me. (And Stephen I am not trying to belittle or "argue" with you here, I am just saying you are not understanding me, thus it forestalls help).
Hey, when I get "zapped" by an unexpected sound it HURTS...deep in my soul/body/psyche/nerves/head...God I don't know "where" exactly, but it can almost knock me out. It certainly makes me disoriented, afraid as hell, dazed, traumatized when I recover a bit...as the bloody ringing is of course going through the roof and it is 'all encompassing'. I just get the hell home and curl up and hope, hope, hope it will go down again.
I mentioned elsewhere that if you have ever experienced the "pain" of a broken heart, or deep loss, it is not "physical damage" pain, but it certainly "feels physical" (sore in chest, ache in core, throbbing head, etc,) = real enough for me! Same deal maybe?!

You know, I have to ask (and does anyone else do this???)...if it does not "hurt" (and I don't care why the auditory system is supposedly not connected to the pain pathways) WHY DO I INVOLUNTARILY SHOUT "OOUUUUUWWWWW!!!" (as in "Ouch!!!") when it happens??? Is that a "pain" cry or not??? I can't tell you how many mother's have looked at me in absolute shock when their sweet little Johnny screamed out behind me, and without even knowing it I have yelled out in pain, and am staggering around in a daze. Yeah it goes down real well in a supermarket...Of course, they think they may need to call Security and I'm the idiot who needs caging! Sigh....

So, I beg to differ. Pain modifies behavior. So does fear. As does the fear of pain...which I constantly try and overcome by trying to use earplugs as little as possible because I know in the long run it is better for my hearing brain, etc. Yet, in the meantime, 95% of my life is restricted compared to before the stage 4 volume level.

I am not really "suffering" (screeching IS my 'silence'). I never or very, very seldom complain about it. I am slowly adapting (1.5 years so far) I guess. I have seen some specialists and so forth (read my "Eyes Like Saucers" post for one, and Acupuncture in Bangkok)...but my main problem is what to do with the rest of my life.
Hey, POW's adapted to the most horrendous conditions in WWII camps in Japan for instance....But was that a"life"???
I am stumped. Seriously.
[And the TRT clinicians are still too far away for me to go through that torturous drive...let alone the fee (which has come down from the $6,000 I was quoted years ago)...I agree that I cannot judge it accurately if have not done it, but I do know that if it was the be all and the end all, it would have filtered through this forum like wildfire and everyone would be directed to it as THE WAY!]...plus I need to get a sugar daddy/mommy too for that one.

Best, Zimichael.

 

Hey @Zimichael

Im sorry to hear about your situation and im sorry to hear that your T has gotten worse over the years. And this is just my opinion but for those who seem to have it worse then others, and from your posts it almost seems if you don't have any hope in getting better. If i were in an awful situation as you described to me at least it would make sense to seek the advice and help from professionals who have experience in dealing with t. I understand its expensive and difficult but it almost seems like your running out of options. You said "Hey, POW's adapted to the most horrendous conditions in WWII camps in Japan for instance....But was that a"life"???I am stumped. Seriously." If i felt this way i would I would reach out to someone who specializes in some sort of T treatment. It doesn't have to be TRT. At the moment these type of treatments are the best we have. If your doing as bad as you say what do you have to lose? Also i should add people who successfully complete or habituate to T probably would not be on here at all would they? So they wouldn't be here to preach about trt. But on this board we have a Doctor who used TRT and treated many patients with TRT. I could understand people being suspicious about it if he was trying to recruit patients, and telling everyone to do TRT. He does neither. Many treatments exist, I understand the personnel difficulties you have pointed out, but it seems to me like you almost don't have a choice. Hope you understand that this comes from a place compassion and hope. Good luck and I sincerely find a way.

 

cullenbohannon... Hey thanks, I really appreciate your response here.

With regard to getting help from a 'professional'. Well, the wee problem is that the professionals I have seen have all been less informed almost than me, or, if not, pretty much conclude what I have. That I am my best "adaptogen". My "Eyes Like Saucers" post was a more recent example of at least not giving up on new ideas, etc., etc.

I have been around tinnitus for so long that this board is about the best possible source of help I could ask for in terms of information and any news of a "cure", or what helps the most. I have also done a lot of counselling work both as a "patient" so to speak and as a "doer/organizer". I organized my own support group (7 people) that met every weekend on Sunday's for seven years, nonstop. There may have been an odd day we missed due to snowed in roads or something, but for a self-organized support/growth group I know that is an amazing track record. People flake out continually in this kind of endeavor, but we all got so much from it we kept wanting to do it. Often up to four or five hours a time, when supposed meet time was two hours.
Why am I saying this??? Because to be honest, any professional counselling I ever did never came close to the help level and understanding that us "unprofessionals" generated for each other. Hence I have become much more jaded with what I have found 'professionally'...not least that it is so darn expensive for so little return. And at my current income, there is no way I can add that to the bills. Also, there is no-one here where I live who has a clue about tinnitus specific counselling as I have asked all the ENTs and audiologists. For more choice in that arena I would have to do that commute to hell and back of maybe three hours each way if not at rush hours (impossible to avoid if going to see anyone in business hours), and I hate driving and road noise. It's not worth it to me. It may even be more harm than good.

You know, maybe I am appearing to be more screwed up than I am in how I write? I am indeed in a pretty shitty situation as life has thrown some pretty heavy duty suffering my way for many many years. Two periods of long undiagnosed illness were pure hell. First in the 90's - which actually turned out to be chronic Giardia from contaminated domestic water supply at the winery where I was a director. Incredible that the GI docs I saw did not even order a stool test!!! Almost malpractice. It was my girl-friend physical therapist who ended up diagnosing it c/o a radio show she heard 18 months after I got very, very sick. The next illness of over 7 years (wherein I got the antibiotics that caused jump number 3 in tinnitus and the new, hyperacusis) was far worse. I am a real "lifer"...I go for it in life. To be laid up like that for so long with no diagnosis was more suffering than I want to remember. So many things tried, so many docs, so many false hopes dashed. It was just cruel...no other word for it.

Ha, ha...Why again am I saying this? Because the tinnitus and hyperacusis that I have now is in a way light duty compared to all that. Don't get me wrong, it sucks big time. And indeed it stops me from doing almost everything that I want to do. (Because yes it does cause "pain")...but in a way I am not really "suffering" that much. Sometimes the feeling of loss is incredible, but it passes. I am not fighting my tinnitus at all. Hell I have had it for so long that I know that does not work. And I also know that my best support is not really "professional" (especially as I can't afford it - you would not believe what I live on, yet feel rich...and thank God for Obamacare as I now have this novel thing called health insurance!!!) I am trying to get a support group going here again, but it will have to be "depression" related as there is not much market for "tinnitus support". I have drawn a blank with that one.

As for TRT...Like I keep trying to say, it is just not feasible. Too far away and too hard to get to. And read the Treatment section on it. Kind of strange that it is so little attended and reported on? Not a lot of posts. Maybe that's because treatment is so successful that no-one comes to this board as has no need? But you would think that there would be people who do come here, then do it, then want to share the fantastic results with us all. I sure would!!!
I'm not knocking it more than to say it is an option out there. I did in fact research it quite thoroughly back in 2006 and attempted to set it up in Henderson NV...where my brother lives, but I was too much of a mess.
The main audiologist I was seeing at the time was a super guy and very top of the field for our area (bigger city south of me). We evaluated the choices together, including his experience with TRT and decided against it. I was just too darn fragile...Anything we tried that had anything to do with sound generation, masking, hearing aids, electronics, white noise, pink noise, whatever, freaked me out and I would turn white as a sheet. Plus most cost a ton. (TRT quote was $6,000).
Later, by the time I was strong enough to consider doing it I was already progressing so well on my own version of sound enrichment etc. and my own research, I skipped it.

To my mind I "fully adapted" to my tinnitus withing the limits of common sense re volume and noise exposure. I'm serious about dancing on stage to hip-hop music and such with a dance troupe 6 years after I was so sensitized I could not even get in a car!...I LOVE modern dance and that is indeed the thing that pains me most and miss the most. So yeah, that is depressing if I think about it, but I don't let myself as it does not do any good.

So enough, I'm rambling...Ha, ha. As you can tell I am alone and I have no-one to talk to and that is more of a problem than the tinnitus in a certain way. The tinnitus/hyperacusis is what causes me to be unable to meet people, go and volunteer in the Peace Corps (I speak some foreign languages), or even help in the the local library - as people are dangerous... They make noises!

Hence my "I'm stumped" is the crux of the matter...I have tried to think of what I can do and what may bring me some enjoyment or meaning for the rest of my life, and so far I have come up totally blank. The things I have tried (attempts at volunteer work) have bombed as like I said, people are noisy...even with my very sophisticated and long experienced "noise alert detection internal warning system". Sigh!

There's an old Brit saying..."Carry on".

That's what I seem to be doing. Some of this stuff is in the hands of the Gods, and maybe they will give me a few breaks down the road. Meanwhile, I will keep "carrying on".

Again, thanks so much for your kind words and maybe one day there will be a "cure" that works for my very weird brand of tinnitus. As my docs have said: "Michael you never seem to get anything 'normal' only these totally bizarre things that no-one can figure out!!!" But you know, I had 42 years without hardly even knowing what a doctor was...never needed one except to take out my tonsils and stitch up some hazards of being too much a 'go for it' guy! Many, many people I met later, in my last 2o years in doctors offices or IV rooms, etc. never got that! They have been ill in some way since they were kids. I don't take that lightly...it gives some perspective to my current predicament.

Take care...Zimichael

 

Then perhaps you have not seen the right 'professional.'

Just out of curiosity, have you seen Malvina Levy?

Stephen Nagler

 

You know, I was not going to reply to the above, but I must admit that human curiosity got the better of me.

I don't know how many times I have said that long drives and distance and road noise (let alone ability to pay) are a genuine problem. I am just dumbfounded that this is not getting through!!! So let me make it more specific:

San Francisco where Malvina is, is a horrendous drive and being (or was) self employed I know well the IRS mileage rate is around 55 cents a mile (and the IRS gives no freebies away so that is a "real driving cost")...OK, to get to San Fran it would cost me around $140 round trip, as her office is thank goodness on the north side.
Then Malvina's initial fee is $150 just for start up consult.
Lets' throw in the bridge toll and before I begin and know whether it is going to get anywhere I am out $300.
Also, interestingly, Malvina apparently does not do TRT, but does do bio-feedback (which is not new to me).

You may say..."That's nothing!" For a "professional" in the big city, indeed it is not. For an unemployed ex-landscape design/landscaper 'professional' with 6 years of college but severe tinnitus, living on Social Security and the rental income from his garage that thank God I turned into a studio before the "second long illness" (and number three level tinnitus)...it is a significant amount!

Look I am not a shy guy (if you don't believe me I will send you my 1040 by fax with SSN redacted)...my annual GROSS INCOME is around $15,000. Yes really. And have the normal Americana requirements of car & house insurance, property taxes, electricity, water, internet connection, road dues, food, etc., etc. yeah, I live REALLY light, yet feel not at all poor. However, I do try and make sure if I spend $$$ that it is going to be worthwhile or that I can't do it or fix it myself.
And oh....I do NOT grow dope. In fact I hate the whole enterprise up here in N. Calif. with a passion despite my 40 years of experience with eco-agriculture, organic farming, and so on. I could grow the finest dope in the county, but it is morally (despite so called 'legal medical grow cards') not acceptable for me...The film "Traffic" explains it all quite well.

So, here is one of the guys I saw for a while... A bit of a drive but nothing like the SF nightmare. I would hazard a wild guess that he may be in the same class as Malvina: http://www.audiologyassociates-sr.com/
The guy is no slouch and was very compassionate, informed, smart, counselled me, gave lots of advice, discussed options, discounted options, and all that. (See previous posts).

You know, finding the "right professional" is something I have also had way too much experience with...medically. If I count, maybe I saw over 30 in my quest to find out what the hell was wrong with me (not including any hearing stuff). I wanted my life back, or at least a diagnosis!!! I saw some top names and was not always impressed. In fact seldom impressed. But I did go broke...Like I said, with my first illness period in the 1990's my bleedin' girl-friend diagnosed me by hearing a radio show on intestinal parasites. I demanded an O&P test the next day and had three of the bastards at phenomenally high levels. And had for at least 18 months and probably years! (Contaminated water supply). Let me tell you I was NOT impressed with the list of professionals I had seen - yes including GI docs. Unbelievable!!!

Are we done here? Am I finally making myself clear? This TT Forum offers me a ton of stuff that fits my 'budget and limitations' let's say.

And yes, for the hell of it Malvina is due to call me back as she has been on vacation for a month.

Zimichael

 

Hope this start to look up for you soon, good luck.

 

I guess your answer to my question is: "No."

To review ...

You live in Northern California and posted: "Well, the wee problem is that the professionals I have seen have all been less informed almost than me."

So I gave you the name of a well-regarded tinnitus audiologist in Northern California and asked if you had seen her.

However, instead of responding along the lines of 'No, but thanks for the lead. I'll look into it,' you chose to compose a 650+ word multi-paragraph treatise culminating with an: "Are we done here?"

Michael, I feel bad for you. Really I do. But this is a tinnitus board, and with all due respect it seems to me that your problems go way way beyond tinnitus. I sincerely hope you find the relief you seek, but whether or not "we" are done here, I certainly am. To borrow from Churchill: Hostility is 'something up with which I will not put.'

All the best to you.

Stephen Nagler

 

My own personal thoughts, is people with varying degrees, of depression, anxiety, and tolerance to change, don't handle T very well.... we seem to lock onto it, commiserate over it, and make it define us. When we realize, its just a simple thing, we can let go of it, and move on with our lives. Yes, I am part of my own problem, but I am trying to deal with the T that was given to me......... and I totally agree with the Dr.. and P.S.... I found your web page when I first got the T, and I thank you for posting it......

 

Hi Piper -

I am so glad my website was of help to you when you first developed tinnitus. That's why I put that website together in the first place. You just made my day!

And I totally agree with you when you say that "people with varying degrees, of depression, anxiety, and tolerance to change, don't handle T very well.... we seem to lock onto it, commiserate over it, and make it define us." My tinnitus surely defined me during that awful time in my life. But as miserable as I was - as depressed and anxious as I was - I was never rude to those who were trying to help me.

All the best -

Dr. Stephen Nagler

 

Dr. Nagler:
I am assuming that you are a physician, as I am. I woke up with tinnitus one morning last September and struggled with this for the first 2-3 months until I appreciated that it was starting to control me. I realized the 4 elements to living with tinnitus - (1) get educated, (2) get sleep - using whatever works, (3) reduce anxiety and (4) using sound to retrain my brain. What do you know - it worked !! Now, here I am 7 months later and I still have tinnitus (age-related). Most of the time I am able to ignore it. I know I will get sufficient sleep on melatonin 5mg + dyphenhydramine 25mg. When it gets a bit intrusive, I put in my hearing aids and bluetooth some nature sounds from my Galaxy 4 phone. This is the 'new' normal. After all, it is only tinnitus. Looking for a cure is like Waiting for Godot.

 

Agreed, why be rude, it has no place here, when all we are trying to do is help ourselves and others. I waited a while before posting anything, but I know how hard the first few months/weeks were.

 

Zimichael, I really do feel for you. I know you're having a very hard time both with your tinnitus and financially. However, it would people on here help you if you didn't bite their head off every time they make a suggestion. Obviously we don't know what your financial situation is. And I think a response to Dr. Nagler would be more fruitful if it was something like, "Sorry, I don't have the means to see this professional yet, do you know of some other way for me to get help without having to fork out so much cash?"

But anyway, if I were in your situation, I wouldn't rule out any type of help method even if you think it is an "old hate". TRT seems to have worked very well for others, so I'd keep an open mind.

 

I habituated after nearly two years. It got worse and Im starting over again. Meantime Im wearing out.
The meds are another topic that needs to be discussed more. I feel Im taking some meds that are exacerbating the problem yet how do I get off them without going off the deep end. I cant sleep without meds. I got problems that drive my depression the T/H are the icing on the cake. I pray there is some realistic relief soon. Just some relief would be a prize. Also I tried some TRT, my insurance wouldnt pay for it and it was too expensive for out of pocket.

 

Really interesting! I've seen Tinnitus the Loud Silence and other videos of Dr. Schaette discussing this phenomenon.

 

I agree with Matt's observations. If the tinnitus is virtually nil when I wake up it proves that the level is variable.
In other words there should be the hope for some reasonable relief. Why do we wake up with little or no T then it increases. I believe its not the meds, as if I take meds in the afternoon or evening the T is still up.
I believe Tinnitus has a bad rap from the media and the medical world. Its not sexy! Hell Ive seen a Dr. that didnt know what hyper acusis was. There are over 60,000,000 with T over 20 mil who are chronic. This is significant and deserves more attention. Before I came down with T I didnt know about this and how people are suffering.
The Gov. spends more on commercials for the military than for research. This is pathetic, as many vets are suffering as well. Some day some one famous will get chronic T then the word will reach more. Meantime millions continue to suffer.