What has been the single biggest thing that has helped you? in Support Forum

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What has been the single biggest thing that has helped you?

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jakatak		#21	[-]
Posts: 2850 08/21/12 6:07 AM Reply Quote More My Recent Posts	I think this thread has a common theme with most contributors. Newbies can take notice. TIME. With the aid of maskers, TRT. CBT, support from others......the one constant......TIME. Don't expect miracles to occur in the first few months. With some effort, diligence, and a big helping of patience, time will be on your side.
Moz		#22	[-]
Posts: 1286 08/21/12 11:04 AM TSMB Supporter Reply Quote More My Recent Posts	jakatak is correct, the constant theme is time. I believe time is the ultimate factor in healing / habituation Think of tinnitus as a wound. At first it's open, very painful & hard to handle. You keep hitting it on something & it drives you nuts. Every movement reminds you it's there But after some time, a scab slowly begins to form over the wound. Now it doesn't hurt so much. It can still bother you, but it isn't the horrible pain of the open wound anymore Time forms a tinnitus scab called habituation. The tinnitus is still there, but time has formed a mental protective coating over it, which is the mind getting so use to it, it no longer hurts so much. It's just there. It's a part of you. You can't help but stop thinking about it so much That's the magic of time How can I continue to freak out day in & day out for months about something that isn't going to kill me & doesn't produce any physical pain? I can't. It's simply not natural to do so. It becomes boring. I finally said to myself "what am I doing, am I going to just sit in this chair freaking out forever"? You start seeing that life is still all around you, just like it was before. You start realizing that you've sat around for months & months feeling horrible, but you're still the same person you were before t & you can pretty much do exactly the same things you used to do Time makes you see all that. Time then get's your butt out of the chair & back into life. Time pushes you into habituation mode So as jakatak said, be patient, work on your mental well being & believe in the process. It happens people. Just give it some time
alex black		#23	[-]
Posts: 1417 08/21/12 11:48 AM Reply Quote More My Recent Posts	With my original tinnitus 21 years ago, the single biggest thing that helped was deciding to "radically accept" it - accept that it was here to stay and "make friends" with it. To do so, I sat for hours one night listening to each and every ringing, hissing, whistling sound reverberating around in my head - and discovering to my amazement that, after months of being distressed by them all, not one of the sounds was truly unpleasant to listen to. As soon as I realized that, they all became a non-issue, and soon just faded from awareness. Unfortunately, the new sound I developed 3 years ago IS extremely unpleasant to hear, so....no habituation yet on that one.
Moz		#24	[-]
Posts: 1286 08/22/12 4:44 AM TSMB Supporter Reply Quote More My Recent Posts	Alex, I know you've went over this before, but as it's been three years with this newest sound, has the passage of time taken the edge off at all? The more I think about your description of the sound, the more it sounds like mine. Mine is so horribly abrasive, so horrifically shrill, so "outer space" foreign, I really can't form a proper description. It's just the most intense, utterly ridiculous noise you could imagine. So I believe my sound might parallel yours But somehow I've moved ahead within the parameters of habituation. So, if indeed our sounds are similar, what is it that makes one of us move ahead & the other not so much? You've even had another sound that you easily habituated to beforehand, which means you understand & have experienced habituation, so you're no rookie. But there has to be something, some psychological element that's holding back any progress at all Could your other medical conditions or problems play a role? I'm just thinking aloud here, because you're a good guy & you deserve to get your life back on track. Somebody somewhere must be able to figure out what's going on
billie48		#25	[-]
Posts: 325 08/22/12 4:20 PM Reply Quote More My Recent Posts	Moz is so good at putting the time perspective into tinnitus habituation equation. I can't do better than that. Time is the majic wand. It does wonder in healing for me. Another thing is that I, like Alex, tried to listen to my horrific high pitch tinnitus scream. It was not easy to stand there listening to it and not wither under the sound. But when I flew on a 16-hr flight to the Orient, I also deliberately concentrated to listen to the loud jet engines and sonic booms from them. It was not easy to focus on the thundering noise too. It definitely drowned out my tinnitus. It was like Goliah against David. Then I imagine what life will be like if my ears roar with the noise of the jet engine for 16 hours a few times per week, for months, for years, for decades. Well, that is exactly some airline hostessess have to face if they hang on the job for long term like they do here in Air Canada. Yet no one working on the plane seems concerned. They don't lose sleep over it. So perhaps it is not the noise level, but the perception of what it will do to us caused so much grief to me. So I figure I need to re-evaluate my reaction to tinnitus, whether I should freak out so much by an innocent sound which doesn't harm & kill me (like Moz said). I can even mask it if I want. Hey, if these airline workers are willing to take on the horrific airplane noises for wages. Perhaps I should accept this tinntisu noise to get my life back. So I come to accept the reality of tinnitus in my life, and habituation becomes a much easier.
dragonaut		#26	[-]
Posts: 173 08/22/12 4:36 PM Reply Quote More My Recent Posts	Well, Rob x 2, Moz and shawnph were probably the most helpful on this board, their posts probably helped me the most at the beginning, when I was almost suicidal.
Lynnears AB		#27	[-]
Posts: 9005 08/22/12 7:02 PM TSMB Supporter Reply Quote More My Recent Posts	I was helped by my psychiatrist, Celexa, Freddie, and everyone else here, many of whom are no longer posting. Coming here made me feel that I wasn't alone with this awful noise in my head. Doctors did tell me that I would get used to it, but I didn't believe them. How could I possibly get used to hearing an annoying noise, day and night ? I was envious of my friends who didn't have tinnitus and talked about it a lot. That helped,but when I came here, I found others like myself, to whom I could talk. That was better than talking to my friends. I guess that my first sentence stands as what helped me the most. This was a good thread to start, Greg.
alex black		#28	[-]
Posts: 1417 08/22/12 9:44 PM Reply Quote More My Recent Posts	hi, Moz, Thanks for your concern and your persistence in asking insightful questions about my situation. I always appreciate the intelligence, empathy, and open mind that you bring to discussions here. The simple answer is, no, my other medical conditions aren't the reason why I'm not habituating to this newer tinnitus sound. Here's one clue that tells me why - when I got my original tinnitus, among all the sudden new sounds in my head, I would sometimes get this exact same sound that is now my problematic one - the sound of chalk screeching down a chalkboard. It would only be very low volume, and would never last for more than a few hours - and I'd only get it once a month or so. One thing that helped me understand that all of my other tinnitus sounds werent' really that unpleasant was thinking "Well, God, at least they're not THAT sound" THAT sound just stopped showing up after the second year, so I never had to deal with it. Until it came on again, 17 years later, and came on to stay. The reason that this sound is so much harder to deal with is simple, and if you ever heard it, obvious. Some sounds are just far more naturally obnoxious than other sounds. There, I said it. The ultimate Heresy on TSMB. The quality of the tinnitus signal makes a huge difference. Saying this in the past has resulted in people telling me, both in public posts and in private messages, to get the hell off of this board. Since none of the admins ever said it, I'm still here, and I'm saying it again, now that you asked. Jastreboff writes that an essential step in habituation is the patient coming to regard their tinnitus as a "neutral" sound (that turned out to be quite easy with all of my other ringing, hissing, buzzing, whistling sounds). But some sounds just aren't "neutral" to the vast majority of humans. When one of those sounds occurs as chronic tinnitus, it's a whole different ballgame. I'm not sure where the answer is for this.
smn		#29	[-]
Posts: 3116 08/23/12 6:34 AM Reply Quote More My Recent Posts	I don't know anybody on this board who has said that the quality of the sound is irrelevant to habituation. I certainly do not feel that way. Habituation is all about reaction. If the quality of your tinnitus affects your reaction, then that is an additional barrier to be overcome. As I understand it, Alex, your other conditions make it difficult to take advantage of the sound-based strategies that would be recommended by most knowledgeable tinnitus clinicians in a case such as yours. smn
MarcusLF		#30	[-]
Posts: 127 08/23/12 6:44 AM Reply Quote More My Recent Posts	alex black wrote: There, I said it. The ultimate Heresy on TSMB. The quality of the tinnitus signal makes a huge difference. Saying this in the past has resulted in people telling me, both in public posts and in private messages, to get the hell off of this board. Not "heresy" at all, but a self-evident truth for many tinnitus sufferers. To learn that someone told you to "get the hell off this board" is, to me, utterly disgusting. Rather, the people who told you that should get off this board. This strange judgmentalism of other people's reactions is pointlessly combative and must stop. Rather, we should all simply accept that each of us will have different experiences in dealing with tinnitus. Someone who has habituated can say to someone who hasn't, "This is what has helped me. I hope in time your suffering might ease too." But to claim that any one person's experience or reaction is somehow more valid or acceptable than another's is repugnant.
alex black		#31	[-]
Posts: 1417 08/23/12 10:10 AM Reply Quote More My Recent Posts	smn wrote: I don't know anybody on this board who has said that the quality of the sound is irrelevant to habituation. This is a great thread that Greg created, and I don't mean to veer from his original intent of having a thread in which people relate what worked for them. This isn't the best place to get into a discussion on old arguments, or on my particular condition - but I'd like to respond - but I recommend that anyone who wisely wants to just read about what has worked for other people should just skip this tangent. smn, you were in the middle of that scrum (the "loudness matters" thread). If you don't recall people saying with conviction that the T signal is irrelevant, I'm genuinely concerned for your memory. Several people asserted that, vehemently and dogmatically - and a number of people disagreed with them, and then all hell broke loose - 600 posts worth. It was insane. I certainly do not feel that way. Habituation is all about reaction. If the quality of your tinnitus affects your reaction, then that is an additional barrier to be overcome. As I understand it, Alex, your other conditions make it difficult to take advantage of the sound-based strategies that would be recommended by most knowledgeable tinnitus clinicians in a case such as yours. Difficult, yes, but not impossible. I can't wear in-ear devices, but I can do any sound therapy by having sounds created and played through a stereo at home, and can listen to it 8 hours a day (or 16 if during sleep as well). I can't listen to music, but I can listen to any white noise (I do now - at least 16 hours a day -but it's not white noise that either masks my tinnitus, or "interferes" with it, as I understand white noise should do in TRT). Masking has proven difficult for an odd reason. My one problematic sound is intermittent, and when it comes on, it is a combinatino of a high-frequency hissing noise (which is what I used to have 24/7 as part of my original tinnitus symphony - and which is no problem at all), and the problematic sound of chalk down a blackboard. When I mask it, once i stop listening to the maksing high-frequency white noise, I get a huge amount of residual inhibition of the non-problematic hissing noise, which leaves only the problematic sound of "chalk down a blackboard", which, by itself without the hissing noise, is much MUCH more annoying. It turns out that the hissing noise is acting almost like a WNG would in TRT!! It "interferes" with the one problematic sound - I can still hear that sound, but the hissing noise partially masks it. Sooo... masking will only work if I do it constantly while this intermittent sound is on (usually 2 out of every 3 days). TRT is still an option -but not with an in-ear WNG - only with an external sound which further "interferes" with my one problematic sound. I was going to start a thread at some point on "Self-administerd TRT" and ask questions about how to best set the external "interfering" sound. I can get any white noise frequency band created to play through my stereo, so this is doable. Since it's come up in this conversation, I guess I can pose that question now. Any thoughts on that?
llilly		#32	[-]
Posts: 9885 08/23/12 2:35 PM Reply Quote More My Recent Posts	Can you point to a public post where you were told to "get the hell off this board"? It would be easy for you to search the archive for it because you know the author and content, alex black.
alex black		#33	[-]
Posts: 1417 08/23/12 3:23 PM Reply Quote More My Recent Posts	llilly wrote: Can you point to a public post where you were told to "get the hell off this board"? It would be easy for you to search the archive for it because you know the author and content, alex black. llilly - that one was a private email and I assume it's not proper to reveal those without the author's consent. If he wishes to grant it, I'll tell. I received two private emails telling me to leave, and one public post. I'm not neurotic enough to go fishing for the public post. Since it's public, I can reveal that the public post was from Cushbart, telling me that I should leave here and go start up my own support board for "people with unbelievably horrible tinnitus", followed by his signature, showing everyone how hilariously he finds himself to be. It's in the "loudness matters" thread. Thanks for your interest!
llilly		#34	[-]
Posts: 9885 08/23/12 7:29 PM Reply Quote More My Recent Posts	The rolling smiley means someone is joking.
Fantine		#35	[-]
Posts: 410 08/24/12 4:40 AM Reply Quote More My Recent Posts	I think that most objective observers would agree that higher-pitched sounds can be more irritating, and produce more stress ("fight or flight" reaction) than lower-frequency sounds. Our bodies just seem to react to them differently, and maybe that's a product of evolution. But once you realize that you're just having a natural reaction, I think that that would help you neutralize the reaction.

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What has been the single biggest thing that has helped you?