Realism About Progress: The Pitch of My Tinnitus Is the Issue

I’m 5 months in. Although the volume of the original “EEEEEE” has gone down to more of a high pitched electric hiss, I’m not seeing any progress in its ever-presence. The pitch is my issue. Basically, this needs to be gone, or I will hear it over the television, and therefore I will be unhappy and unable to relax. Ever. I do not think habituation can occur with such a pitch. I need some vets to chime in here because I’m thinking my only chance at this point is stem cell therapy. I’ve read and reread all of the success stories I can stomach and I can’t say that mine is really “fading” at all. Some oddities have occurred when I haven’t heard it for some 10-45 seconds or so, but such effects are short lived. Is the idea that these gaps will become more frequent as time passes?

I really need some help with this because I refuse to spend my late 20s pondering pulling the trigger on something that could fix me and restore my quality of life rather than a year and a half down the road. Because I refuse to live like this.

I am an opponent of the habituation hypothesis for cases such as these. Sorry to tag you @JohnAdams but I could really use your objective validation of your own condition for comparison here, because I know you’re adamant that habituation is not the way and that silence and proper medicine is the solution. It sounds like our tinnitus shares similar characteristics and I know you’ve been battling this longer than me. Is 5 months just a trash amount of time to expect this to diminish?

 

I'm right there with you brightside. I'm at 5 1/2 months myself, and also suffer from a high pitch that is on/off maskable. While I think I saw some initial decreases, things appear to have stabilized, and I'm not sure that I'm seeing any further decreases. Or maybe I am; it's so hard to tell.

Mostly I just think I'm getting used to it. Not sure if that's what this magical "habituation" thing is, but it mostly just feels like "resignation". Are you the one who initially coined that distinction? I liked it; may steal it.

From what I understand, people commonly experience decreases up to one year, with some reports beyond that even. So I'd think at 5 months there's still a reasonable chance that things could improve some. But again, it's so hard to know.

Wish I had more answers for you. I agree that habituation seems like a bit of a crock (because, of course, it is). And yet... the only reason it exists is because nothing else exists at all. So... yeah.

 

All of us, including myself would give all we have to have silence. Unfortunately, that is not happening right now. If there is no silence, do we just stop everything in our lives and wait for that possible one day to have it? Meds can be very helpful and they can also carry side effects.

Tinnitus is unpredictable by nature, 5 months is a very short amount of time to measure our progress.

 

I’m mostly concerned with my diminished reading comprehension and need for extensive sleep meds to get to sleep (250mg Seroquel, 15mg Mirtazapine). Again, my concern is that my pitch of the tinnitus is very hard to mask and that I’ve always had difficulty concentrating on scholarly material without complete silence and concentration.

 

It sounds like you have been making progress with the volume and the pitch. Your high-pitch tone became a hiss - that's what usually happens before it switches to a lower-pitch hiss. You ought to continue to improve. You will definitely feel a lot better in a year or two, and probably sooner. You just need to adjust your expectations. It will become easier to ignore, but this might take a long time.

 

Thank you so much for your reassurance Bill. I will remain patient. Hopefully in a years time we will all have access to something regenerative that will expedite this nightmarishly slow healing process.

 

It’s like I’m looking in the mirror whenever I read one of your posts. It is incredibly hard to tell if I’m getting better. Winter is here, which means more isolation (can’t drive—PTSD from accident) which drives deeper obsession and fixation because I don’t have much else to fill the time with. Sometimes it feels like I’m making strides, but then I get brought back down to earth in times like these and it shakes my confidence in my ability to objectively evaluate my progress. God help us. FX-322, Hough, Shore, Pipeline, Thanos help us.

& yes that was me in regards to habituation/resignation

 

I'm sort of at a similar stage, now at 7 months in, with the initial high pitched tone having become more of a high pitched hiss - still pretty annoying but somehow less annoying (perhaps i'm just more used to it now) - I would say that the 5 month point was the time when it stopped impacting on sleep, as it had a big impact on sleep up to about September.

 

@mrbrightside614 vet here

I would not recommend stem cell therapy because it's very unproven, potentially very dangerous, even within the US many providers are suspect (let alone in Thailand or whenever) and overall I think it's extremely unlikely to be helpful and may be harmful based on the information available to date.

I share your basically dismal take on "habituation therapy". I see habituation as a neurological process that happens, more for some than others, and which can really only be minimally aided by conscious action. I think we can have a lot more control over our distress; that's a separate topic.

I, too, at 29 or 30 said "I REFUSE TO LIVE LIKE THIS!!!"

I'm still here a decade later, eeeeeEEEEEEeeeeeeeeEeee and all. Mostly life has been pretty good the past few years.

 

I agree with this. Seems to make sense.

I think the combination of high pitch and volume makes tinnitus unbearable. It's a combo double whammy. I don't know how else to explain it. Mine is a ringing and only rarely do I faintly head a hiss along with ringing. I don't recall ever having only a hiss. Maybe many months ago when I thought I was improving.

It appears to me that a hiss would be preferable to ringing - if we describe it as "EEEEEE." It's so awful.

 

I respect your position and appreciate your taking the time to address my health concerns. Maybe I’ll get some hearing aids + maskers or something to bridge the time between now and FX-322 because I don’t think I’m where I need to be in the coping process. I’m still obsessing and it’s unhealthy and I don’t know how to stop it.

 

Are you able to get out much brightside? Obviously super noisy environments are no good, but just getting out of the house, going for a walk, going to the library, grabbing a coffee... anything that can get you out of the house and out of your head, is helpful. Yes it's winter, and not being able to drive is a challenge - but it's important to make sure you're staying busy as much as you can.

 

I strength train every day for about 1.5-2.5 hours, depending on the day. I was intending to become a strength coach and am currently in my penultimate semester to complete my Master’s in Sport Science, but I fear that the clanging of weights may be inhibiting progress.

Also, I’m just so fucking nervous all the time I am sometimes literally shaking (usually mornings). I know that there’s nothing I can do about it but let time pass and hope that there will be some meaningful therapy that I can seek out, but the thought of undertaking a new job when my brain is a fucking mess terrifies me. I used to be extremely analytical and detail-oriented (which is very important in program design), but I fear that I will not be able to rise to the level of collegiate head strength and conditioning coach with such handicaps.

I realize this time is probably going to be the apex of my tinnitus disability and inability to cope and distract, but when you’re in the shit you can’t really see a way out. If this pitch were to get knocked down below ambient level I would really have a fighting chance. I hope @Bill Bauer is correct in his analysis, in addition to the four/five big promising therapies coming out sooner rather than later for the sake of my career and life.

 

I agree. At its best it sounds like a tire losing its air, at its worst it’s the searing “EEEE”. Again, there are oddities where I will only hear the low frequency whir for maybe 30 seconds. I pray that these gaps will become more and more commonplace until the hiss is completely removed. Although I’d like the whir to be eradicated, as I’ve postulated that maybe the hiss is a secondary outcome of the whir itself “mutating”, I could probably deal with the whir.

 

That's a good description, a tire losing air. I still it's also close to cicadas noise too but the pitch might be different now but the sound is very close.

 

How long have you had yours? I’m assuming noise exposure? Mine was an airbag. That’s why I know that appropriately administered stem cells are my main chance and recapturing silence and I’m burning alive everyday in anticipation of help/hope. I got hyperacusis mostly in the bad ear, but somewhat in the right although I’m less concerned with fixing this as if my tinnitus were fixed, I would most certainly opt for a safe, quiet job in research. I can only imagine how good I’d be at such a job after being subjected to the discipline one must evolve to concentrate through the hell of tinnitus.

 

I am sorry, I don't know where you got this idea, but I can't find a reason to think it's true. The research which has been performed is preliminary, minimal, and spotty. Unproven invasive novel therapies are as likely to be damaging as helpful.

Beyond that, the general timeframe for arresting the inflammatory processes which lead to tinnitus, is hours to a day or so; after that, excitotoxicity has done its thing.

I know you're very new to this and panicked, and if you want to channel that energy into flying around the world having sketchy doctors jab things into your ears, that's your right, but it sounds like a mistake to me.

I've had a few airbag deployments; for me the whiplash was worse than the noise. Sucks, but on the other hand, in at least one case I definitely would have been dead otherwise (tree @ 75mph).

Regardless of what this forum might make you think, in the vast majority of cases, tinnitus calms and quiets substantially over the first 3-6 months, which is why it's not even considered a chronic problem unless it's still present past that. This has been the experience of dozens of rock musicians, rave kids, motorcyclists, lumberjacks and firearms-users I know. I think the best thing you can do is avoid further noise trauma, eat and sleep well, get medical treatment for any neck or jaw issues which may arise secondary to the accident trauma, and then beyond that put whatever time and energy you have into consciously trying to calm yourself down and get through this difficult initial period.

 

I don't know what the cause of your T is, but keep in mind that whenever neck issues are involved, some training exercises can actually worsen the situation. After my minor whiplash, I've been doing specified neck exercises to help my neck recover. It took two to three months before I started noticing true results. Yet, although my T improved a massive amount by now, I'm not gonna pick up any activities that are heavy for the neck, not before I'm sure it has completely healed.

Just wanted to point out that piece of info, ignore it if it is irrelevant in your case.

 

I’m investing confidence in FX-322, Hough, and Pipeline. I think Shore and Thanos could provide complementary support in time and knock out the whole thing. I will be getting a settlement in time, by which I should be able to afford all meaningful therapies to restore my minimal (in comparison) hearing loss. Unless the reports that come out this summer/fall indicate that these therapies will be way out of reach, I will not go forward with StemCells 21. However, you can not minimize the success they’ve had in treating @attheedgeofscience and @undecided and the third guy who’s handle eludes me because it’s like 4 initials or something.

As I’ve said, I cannot drive, so this severely limits my options in terms of seeking meaningful therapy. These are white knuckle times. The reason I’m growing more concerned as of late is because I am nearing that 6-month mark, and although commonly proposed practice is to not timetable your progress, this is in my very character. I’ve always analyzed everything in terms of variables against time—a former gift, that has now become my curse in battling tinnitus.

 

Yep I went through physical therapy for it. My neck is tight but not often is it painful. All heavy compounds have never affected the character or perception of my tinnitus—the only thing that changes that are loud noise exposure, and (sometimes) benzodiazepine usage, but I do not use them because effects are inconsistent and they’re just overall fucking bad for your brain.

 

You can do whatever you want; I absolutely minimize them as unattested anecdotes which are, at best, single self-reported case studies with no placebo control and no way of knowing how their conditions would have progressed without these interventions.

Some of the pictures from the clinic that ATEOS posted were nuts; machines designed to fix your "energy fields" or some nonsense that were using basically stock clip-art computer graphics. Even he admitted he was deeply dubious of that angle of things. So, "clinic that talks about energy fields and is clearly offering some treatments which are definite nonsense, also claims to be able to isolate mesenchymal stem cells effectively and inject them, something which they do not meaningfully and in a bullet-proof way demonstrate to the patient that they are actually doing, operating way outside of FDA jurisdiction whose major clients are rich, desperate foreigners"?

That basically checks every "be very skeptical" box for me. None of these places have published research, and even if half of them are actually trying to do the procedures they say they are, I'm skeptical they are succeeding.

 

I believe I suffered an acoustic trauma which was the likely trigger on February 15 of last year. I had immediate left ear pain after the loud noise and I don't quite recall the exact recognition of tinnitus but I think it was a day or two later, not more. It fluctuated widely back then and rarely does now. Changes including changes in volume or intensity is very minor and subtle while being brief. I got worse from April on.

I don't blame you for wanting to try treatments but I want to see real data released and an announcement that treatment ABC has helped severe tinnitus sufferers with tinnitus volume reduction among other things.

 

Undecided was both a skeptic and a malcontent who suffered for 5 years before his breakthrough. Sure, untested, sure, sketchy. But Thailand is ranked sixth in health care index, where the U.S. is ranked 30th.

 

ABC?
Edit: oh, like general treatment “X”

Further, you mean February 2018 I assume? Sorry to hear things haven’t gotten better for you. Mine originally got way worse before getting a little better. Now it just seems to be a stabilized, but moderately severe level.

 

I currently have an orthodontic appliance to fix my TMJ. It’s my hope that the SC21 therapies may address issues in my neck in addition to the tinnitus. That’s the major reason why I would opt for SC21 over other therapies coming down the pipeline, in addition to time preference.

 

I have to respectfully disagree with this. There are some published studies, not on a large scale, but still peer reviewed studies. It is definitely experimental, but that doesn't mean it's necessarily unsafe. Susan Shore's device is experimental and to my knowledge it hasn't 'hurt' anyone. Stem cells have a very good safety profile compared to many of the pharmaceutical products out on the market. People currently have to go outside of the US to get expanded cells (the more powerful ones), but this is only the fault of the FDA for not encouraging the progress of safe regenerative medicine in the US. The landscape is changing though, and pretty soon they will be forced to change their attitude and the legal framework surrounding it as regenerative medicine, gene editing, etc is where we are headed.

Also as someone familiar with the scientific process, you know that SC 21 technically cannot really publish their results in any credible peer reviewed journals because they charge for their treatments and their treatments are not set up like clinical trials. Stem Cell Institute in Panama who uses stem cells for treatment of childhood autism recently published in a scientific journal (only safety data) and got heat for it, even though it wasn't even about efficacy! You had best believe they have the efficacy data, but again Duke will beat them to publishing it (Duke is running a clinical trial for stem cell treatment for autism), because it's difficult to publish when you charge for treatment and don't have an IRB.

However if you are interested in some data from research institutions. I can attach those. I don't have time atm, but just ask.

There are four on Tinnitus Talk who have posted about going to SC 21, and all experienced significant reduction in sound. @LJMD and @FERNANDO GIL are the two that you are missing. I will also say I think SC 21 is the best place to go for treating tinnitus/hearing loss at the moment. They aren't a small time gig, in fact they recently treated Russell Simmons for chronic back pain. I think that is saying something.

 

That's because healthcare is astronomically expensive here. To their credit Numbeo is really open about the algorithm they're using; to their detriment, this algorithm doesn't actually say much about what I, as a person of average-or-better-than-average means, should expect in terms of treatment in one country versus the other.

Getting to the bottom of that is a thornier question. Cynically, I would say there's a reason that people often go to Thailand for experimental things which are not available in the US -- and there's also a reason that people in the US with good health coverage do not go to Thailand to get a heart bypass.

Actual data is plentiful, but analysis of such is long and difficult and we can find lots to argue about. It's not hard to find lots of metrics where the US looks better, though, and I think if the question is, "is a person who either has real good insurance or is independently wealthy, going to get better healthcare in the US or in Thailand", the answer is pretty equivocally the US.

https://www.who.int/healthinfo/paper30.pdf

US beats Thailand by a bit in overall efficiency per WHO's analysis; obviously their methodology is different and might value safety and efficiency of treatment higher than costs compared to the Numbeo model.

This paper attempts to make a comparison and does a good job, IMO, sketching out the difficulty in doing so:

http://d-scholarship.pitt.edu/27746/1/Dulin_A_MPHessay_4_2016.pdf

My takeaway is that Thailand has such monumentally better access to care for lower income people, that it skews all kinds of indexes heavily. Finding comparative data on, say, hospital mortality rates following a group of people admitted with the same ICD-9 codes for the same operation, would be super helpful.

 

No, February 2019. I meant this year.

ABC meaning any treatment but it can more than one too.

 

I don’t necessarily agree with this statement. It may be true for acute trauma care, but I don’t think it’s true for chronic conditions. And I think it’s a draw for conditions like cancer where we do develop the most cutting edge treatments but that doesn’t translate to US citizens having better access to those treatments (for a variety of reasons).

Again I think that’s partly the fault of the FDA that the quality of medical care in the US has really slipped in comparison to Asian countries in the last few years whose health care has gotten better, which is borne out by the latest life expectancy data showing a minor decline in the US life expectancy for the third year in a row.

 

Hey guys, I really need some help here. On Dec. 18th I will be through 5-6 months of tinnitus (6months ago original onset—5 months ago searing eeee sound that woke me up in the middle of the night).

I still can’t focus on anything that isn’t tinnitus related. Whenever I try to read for school, the tinnitus intrudes and is difficult to focus my attention away from it and stay on task. My tinnitus varies from 3 (first thing in the morning) to 6 (can hear it over the television and over music).

I think that while tinnitus intrusion and loudness are likely correlated, that they are somewhat separate entities. How do you guys with moderate to severe tinnitus even function? I used to pride myself on the quality of my research reviews and ability to self-educate, but this is another facet of my character that is—pure and simple, dying.

It’s really hard to weigh the “I could get better” against “there could be a cure soon” against “I still can’t do shit right now”. How the hell do you function?