Thanks man. It's really just stuff I learned around here and elsewhere. People are very concerned about labels but for me it doesn't really matter if it's a "cure" or "coping" or whatever, just that it helps you get back to living life!
My Hyperacusis Has Reduced by 80%.
- Thread starter Mike34
- Start date
Thanks man. It's really just stuff I learned around here and elsewhere. People are very concerned about labels but for me it doesn't really matter if it's a "cure" or "coping" or whatever, just that it helps you get back to living life!
I just went to the apparent go-to TRT expert in Madrid Spain and yep, he gave me five minutes, two of which I had to go on the defensive when he gave me a condescending look asking me how I made a living. Walking me out the door after the routine hearing loss check these folk for some odd reason just love doing, I tried to get something out of him as to why laser is a scam, or why these ''phantom pains'' are so similar to objective tensor/stapedius muscle spasms, and all I got were half-assed explanations and a nice brief talk about how what I really have is anxiety because ''anyone who sleeps during the day to concentrate at night is nuts'', by which time I was thinking in my mind ''fuck you sideways''.
I'm thinking of going back to see him do a tympanometry on me. Maybe I can squeeze his highness to explain to me how Jastreboff plans on making me stop thinking about pain like he stops tinnitus patients with sound. Technically if I ever did TRT I'd have to do it at night as the rest of the day I'd be hearing other sounds which would ''evoke negative thoughts'' like their shrinks love to say, but that would go against Jastreboff scientific discoveries about convincing the tribe of reticent tinnitus donkeys to mingle. I'll ask him maybe I should do TRT while being Shawshank Redemptioned up the bum bum, that way my negative thoughts will be elsewhere other than the ear.
MemberI have severe hyperacusis of a very precise kind that affects the startle reflex. All sounds, at the moment they begin, hurt me. So I'm fine in the shower, relatively, I'm OK moving around the house, I don't have serious kinds of ear fullness but there definitely is an echo of sorts, a vibration there as a result of sound. I use a fan or a fanlike sound to cover exterior sounds to sleep with, and I avoid venues with too much sound. But that's not the kind of sound you have to put up with if you need to hustle to survive. I wouldn't call that a success of CBT or habituation. If TRT were to prove a success it would have to make the case for TRT without adding advice like this thread to its winning showcase because that skews their positive results.
My survival methods I invented myself, and I had to question myself thoroughly because of the deep uncertain economic consequences of the needs I discovered I had. All I got from CBT was ridiculous encouragement on adapting to other people and correcting my thought, and I don't think Jastreboff and co were ready for the tremendous difference between getting someone with T and someone with H to do TRT. Back when I tried I was hustling to survive, so I was living in pretty horrific precarious conditions, and that's one of the reasons I didn't do TRT.
I'm not saying TRT is definitely a failure. I downloaded a bunch of books on T and one of them is J's Neurophysiological model, and I've read the odd article by him, and he doesn't want to go deep into the intricacies of what it means to create a positive wall of sound for someone with H. For example, if I did TRT, I would need to do it in silence, because TRT isn't a deep bass sound that covers up the horrible sound of cars passing by, but J is so obsessed with getting the tinnitus folk out of their caves, he can't carve a coherent TRT environment for those with H. And that's another of the reasons why I never did TRT. There are more though, too many to list here, but another is that I did masking, two things in the ears which were a massive scam, so by the time they said ''oh no, we mean TRT, masking is so 2005'', I was rolling my eyes, and still am.
It's too early for me to give a decisive conclusion on this, but things aren't looking good for the sound enrichment science. I'd like to know why the phantom pain of H that Margaret Jastreboff believes in is met by other doctors claiming they've been cutting spasming tensor muscles and eliminating H in the process, and why my local TRT doc tells me I have anxiety and that he believes it would be severely unethical to cut the tensor (he hasn't done me a tympanometry yet but he was talking as if objective T and H was rarer than getting Laura Antonelli as a wife). I'm not saying I have objective H yet, for all I know right now, TRT could be right, and those that talk about botox and cutting spasming muscle are unethical pieces of shit. But I am wondering how many of those with superior canal dehiscence Jastreboff discarded as anxious before the condition was discovered in the early 00s. Time to get my head back into those pubmed abstracts and obscure russian pirated article sites Elsevier has got its knickers in a twist about, I guess.
o.......k........
Hey dude, your habituation is fine for you, I'm happy you got it working. Unfortunately though, and it has little to do with you, you've used a couple of polemical terms like sound enrichment or habituation that have been subject to a lot of debate over the years. Unfortunately the storm for some reason ended up in your thread.
I have seen nothing yet to invalidate these courses of action as legitimate therapies. I have searched the guts out of OpenAthens/Pubmed etc for papers on these things, and, rare though they are, they provide more positivity than most of the TRT papers I've seen......then they have the hide to decide ethics on us when they know next to nothing about the subject anyway. Not giving these therapies a proper airing and serious study is where the unethical behaviour lies. TRT will not work for everyone, and there needs to be more for those who need it.
Fair enough. I wouldn't say that invalidates anything I said. Do these techniques actually CURE H? Most likely not. But I believe they put the mind/body in a state that allows healing - maybe not for all - but for some. Works for me.
Well I'm getting through a couple of studies like these a day. I'm getting mixed signs from the articles themselves, at some points saying they cured H and others saying they worsen H.
I think the problem lies with there being not enough understanding to develop a proper set of criteria for surgery. (I do sometimes think that the existence and mediacl convenience of TRT delays the development of better understanding and therapies). From what I can gather a lot of it is based on an educated form of "OK lets do it and see what happens". The Botox angle is potentially good diagnostically, but as ever the problem is access and vision. Have you come across anything where the Stapedius has been successfully botoxed? I know of cases involving the tensor tympani that have had good results.
From my limited experience on info about myoclonus, I have read articles where they say that tensor tympani spasm can actually be seen through endoscopy but stapedius cannot, that stapedius cutting would in theory give you hyperacusis but in practice it doesn't (wtf), that symptoms are usually but not only clicking for the tensor and buzzing for the stapedius (I have high pitched tinnitus but also low pitched so maybe the latter can be considered buzz I dunno), that botox causes heart problems, that cutting these spasming muslces might affect facial nerves. I've pretty much followed the hyperlinks on this thread:
https://www.tinnitustalk.com/threads/ear-pain-triggered-by-sound-need-help.3125/
In person, I've talked with a doc from the TRT camp that may have said that this is a terrible idea but I can't specify if he meant that because back then I didn't know about this. And in forums I've read a guy called supersmooth at chat-hyperacusis dot net who says he got worse H from getting both the stapedius and tensor cut, but then I could've sworn in another post says he was very happy with it (again wtf)...
On stapedius, I think I read you say you knew someone who had gotten their stapedius botoxed, or that it was too small to get botox.
Well, what I saw was that Botox had been applied using some kind of micro-gelfoam compress because the stapedius is just too small to inject into. It wasn't the original paper I saw, but a lit. review of papers concerning use of Botox in non-cosmetic head and neck conditions. It referred to improvement lasting four months, which is what you'd expect from Botox. As a recurrent treatment it's cumbersome and expensive, but as a diagnostic tool to test one's response to the absence of an active Stapedius (normal or pathological function) it seems to have remarkable value as prep for the big cut. I saw similar to what you note there about the difference between TT and ST symptoms as well. Makes sense. The bigger muscle being more clunky (clicking) and the smaller one being finer (buzzing). One paper I have talks about the Stapedius spasming at such a rate as to cause a fine, semi-constant tinnitus and sound intolerance (which is where I think I'm at). I think a lot of people confuse their middle-ear myoclonus and don't recognize the fundamental differences between the two implicated muscles.
I have both of these distinctly - a clicking which I believe is the tensor and the buzzing which is the stapedius. It's more like a very quick spasm that feels like a buzz. When my nerve pain in my head goes down, so does the spasming, so I'm pretty sure mine is tied to nerve dysfunction. I get the clicking randomly, but the spasming/buzzing comes as a direct result of spontaneous sound (like dropping silverware) rather than continuous sound.
I've seen a paper that talks about nerve damage occurring soon after cochlear damage, kind of like a progression of the same pathological process, but becoming evident some time after, which is possibly why many of us develop H sometime after T (which would rebut a lot of the psychology-based theories if true). The paper was called "adding insult to injury" funnily enough. My tinnitus began about a week after my last substantial sound exposure, and the H/sound intolerance started about a fortnight after that, slowly winding up. At first I just thought my car stereo was damaged, then I realized it was me.
Those of us who have put in weeks, months, years of night-shift working to provide complex medical/nursing services at such hours would like a word with your TRT "expert".
I'm ready for those kinds of accusations these days, but a decade ago no, it was a disaster. I was redeemed and habituated by them through anti depressants, motivators and CBT so that they could claim improvements in their highly biased Tinnitus Handicap questionnaires, and told in front of a family member, just like today, that what I really had was anxiety. That meant the opportunism and domestic darwinism you'd find in a drunk pious violent catholic irish household went off the charts, and set me back years in trying to find a strategy for survival. This time I was better-read and ready for such nonsense, and was more preoccupied with finding out what he thought of botox and laser, and this week I'm going to another that holds his beliefs to see what he knows and how they build positive thinking environments for H sufferers if they're so preoccupied with telling them to be normal, with shrinks correcting thoughts in a condition that lateral sclerosis and epileptics have, ie not really shrink material...
What was disgraceful about this doctor is the hour waiting time he made me go through, and the literally 3 or 4 minutes he gave me, the fact I had to go twice, one so he could do a ECOG and the other so he could interpret the results, and that for the tympanogram/immitance test he wants me to go a third time because he didn't have the right equipment there that day, if I were thinking conspiracy I'd be wondering if he's trying to collect consulting fees from the insurance company...
Well the idea is the neural networks get rewired by the excitoxicity and that that's what manifests T and H. Things like biofeedback or magnetic stimulation base themselves on these theories. TRT believers probably believe that this rewiring is what creates the spasming in the tensor or stapedius muscles.
I would think that the vibration of my ear might be related to the low frequency tinnitus I have. I remember back before I had noticeable H, and I only had T, that this low frequency tinnitus would turn off in silence and that it would only be on when exposed to sounds. But when H came in, it went permanent. I believe you said elsewhere that you don't know if the vibration is the cause of the pain, or if it might even protect us from more pain, I too am not sure at all.
The part that irks me about TRT, of course, is the obvious consequences they have had in that ENTs have not been educated to warn against sound exposure. When I got T in 99, I wasn't warned, and then a year later went to a night club and got H. When I read stories of audiologists saying T is all just perception anyway don't worry, it's obvious this is still going on.
I don't think anyone has a clue, but health is a business, and the model doesn't have to be therapeutic to be profitable. I'm just glad we don't treat other symptoms, like chest pain, with a sound machine and a pamphlet on CBT.
Interesting. My T started 6 weeks after the nerve injury in my head and about a week after I had several MRIs in a row. H started several months after my T as well.
noisebox
Member
- Jul 4, 2015
- 319
- Tinnitus Since
- 04/2012
- Cause of Tinnitus
- West End show. Came back 2015 vitamin D overdose prescribed
The problem is GP's wont give it. I don't have seizures so cant get it. I wont buy off the net either due to not knowing what we get.
How long did it take to cure H and how much did you take? If you are cured of H and have retigabine for T why do you still hanker after autiphony drug?
Who said buying them off the internet? You go to Spain and go to an official pharmacy and you'll get them without a prescription.
My H is almost gone by itself...took full 2 years to get to this. So it can go away by itself.
noisebox
Member
- Jul 4, 2015
- 319
- Tinnitus Since
- 04/2012
- Cause of Tinnitus
- West End show. Came back 2015 vitamin D overdose prescribed
Firstly I could never get on a plane right now with H, haha. Besides if they work so well cant you get your gp to prescribe or a neuro?
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