- Apr 24, 2018
- 217
- Tinnitus Since
- 11/2017
- Cause of Tinnitus
- Still Under Investigation
Hello, everyone
I'm not sure how long a standard introductory to the forum should be, but I've been lurking here for a while and have finally gotten to the point where I wanted to say a few things. Scan down, and if this seems too long to bother with, feel free to skip – no offense taken! I promise, future posts will not be as hefty!
Tinnitus in the right ear set in at the end of last November. I was lucky in that I was able to get to a local audiologist right away and get a hearing test, which was read as borderline normal hearing with some high frequency loss. Ear wax was noted, and they required that this be looked at by my PCP in case it was just a matter of buildup and syringing to clear the problem. I was able to get this done quickly, and although the syringing did not solve the issue, I was then given a referral to an ENT, was seen in December and have been working with him and the audiologist in his office ever since.
First was a two-week trial and taper of prednisone, and a prescription for clonazepam for sleep. The prednisone did not work for me, and I hesitated about a week before I took the clonazepam for the first time because I was reluctant to take a benzodiazepine.
In the early days, there were periods when the tinnitus stopped spontaneously. Once for four hours, once for twelve, and then another couple of times for an hour or so. When it got to the point that it was hanging in there, I finally took the clonazepam. Oddly, within a half hour of taking that first dose (0.5 mg) the tinnitus faded to nothing. This lasted about four hours, enough to allow me the first night of sleep I had had in well over a week. It was back in the morning, and as tempted as I was to just take another pill, I didn't do it. I had read up on benzos, know they can be difficult to wean off, and although it has not had the same complete quieting effect it had that first time, it does seem to ratchet it down a notch before bedtime, so I still continue to take it for sleep, still at the original low dose (0.5 mg) and still with the benefit of approximately 5-6 hours of sleep, albeit interrupted. I know that, eventually, I will want to discontinue them, but right now, they are helping me. I've already discussed this with my ENT.
My ENT tried me on several different things, including amitriptyline (made me agitated so I only took it for a few days, although I wonder, now, if I gave it a good enough chance – I've read that some people have had some degree of relief with it while others have not) as well as a prescription for Gabapentin (have not tried it yet – again, so much conflicting info about these drugs and their efficacy and side effects) and recently a diuretic on the chance that there might be fluid in the ear (there is some ear crackling, although [at least so far] not the characteristic kind of "cotton in the ear" fullness I've read about, and only a couple of brief instances where I felt very slightly off-balance. I can't actually ascribe that to anything in particular, as there are several things that could have caused that, and there has, thus far, been no "classic" dizziness. I swallow and hear crackling, and at times (particularly in the morning) there might be a slight flutter of the drum on the left, but so far that is a brief and passing thing.
I have yet to pick up the Rx for the diuretic (spironolactone) but may give it a shot. I'm reluctant to pump myself full of too many drugs, but know that sometimes these things are trial and error.
I freely admit that I'm still in the throes of "spike fear." "If I take this, am I going to make it worse? If I don't take it, am I just wasting my own and my ENT's time?" Reading up on it sometimes confuses the issue for me, because the information ranges from varying degrees of success to horror stories. I have gotten some good food for thought from this forum on all of this, though.
In January, I began working with a white noise generator through the audiologist in the ENT's office. Again – very fortunate. I was allowed to try several different types over a period of a couple of months (Phonak and Seimens), and finally bought the Phonak Audeo B50-312 a couple of weeks ago. At the moment I am only working with the one generator, as the tinnitus has consistently been in the right ear, although recently it seems like it sometimes bounces over to the left. I have a LectroFan white noise generator that I use beside the bed at night, and have found several YouTube videos (again, via this forum) that have been of some help and that I use in the background during the day when I'm not wearing the over-the-ear WNG.
I like the Phonak because it can function as a straight hearing aid, hearing aid with WNG, or just WNG, and the volume is adjustable on all programs. I usually use the WNG at the lowest setting, as I have come to understand (again, thanks Tinnitus Talk!) that you need to be able to hear both the WNG and the tinnitus in order to move toward habituation. (I also know that best efficacy is probably to use two, but at the moment finances dictate the purchase of only one, and I have found it to be of some benefit – enough so that I decided I opted to shift some priorities around and buy one.)
It is always louder in the morning after waking up. It's louder after I remove the WNG for the day although I'm guessing this is not unusual. It's unpredictable and although there have actually been a few days when it seems less intrusive, it is always there, and I know I am thinking and worrying about it too much.
I've decided, in the meantime, as I work to get a hold of this thing, to do (or not do) a few things.
One: I'm not going to think about it in terms of "the rest of my life." I try, instead, to focus on what I need to do today – just today -- to manage it, with the understanding that there are just going to be things that are beyond my control. If I start thinking in terms of "the rest of my life," (which I was doing at the beginning) it's going to overwhelm me.
Another thing I have decided is to avoid the use of catastrophic language when talking about it. Again, in the early days, I went through that. I went onto forums and informational websites where people can leave comments, and was exposed to all of that. Some of it was the most frightening stuff I've ever read in my life. All it did was push me into a bigger place of fear.
When I decided to finally post here, I thought: "Someone is waking up with this for the first time, today. Someone is panicking, someone's anxiety has just gone through the roof, someone's life has just changed and they didn't even see it coming, someone is in pain. What if yours is the first post they ever look at on a forum and it's full of the same kind of stuff that caused you to go off the rails in your first weeks of trying to deal with this? What good will that do?"
I'm not saying it's easy. I'm not saying I've habituated. (I'm not sure I even understand the concept of habituation, but I'm trying.) I'm not even saying I'm handling it well from one day to the next. I'm not past the fear and everything else that comes with this. I'm not saying that it has ceased to be a struggle. I know there will be setbacks. I know I'm still thinking about it too much. But I also understand, now, in a way I didn't then, that there are things that can be tried to manage it right from the beginning, and that reading the posts on this forum that encouraged this approach were the ones that were the most helpful to me and kept me going.
Another thing I learned just from reading the hundreds of different comments here over the past few months: Just because something didn't work for one person, doesn't mean it won't work for another. And vice versa. I try to approach each new management attempt with as much objective information as I can get, both from my ENT, audiologist, and my own research (difficult on the internet!) and then make my choice from that. Ultimately, it's up to me what I will and won't do, and what seems worth the risk and what doesn't. I can seek advice if I want, but no one can make those decisions for me.
I have lost a good deal of weight. My appetite went, and I became concerned about "spiking foods" (another marvelous example of tons of research and no real agreement on what-to, how-to, and when-to!) In an odd way, it was reassuring to learn that several people here have gone through this and have since managed to get back to regular eating habits and to regain some of the weight they have lost. I still keep track of what I eat, looking for possible triggers, although some say that doing so is pointless. For me, it is useful right now, because it's something I want to explore as I learn to deal with this. I carry ear plugs and use them if I need them. If I'm in a restaurant, or (as I was recently) at a friend's birthday party and the environment becomes too loud, I leave. I don't worry that I'm "cheating myself out of a good time" or over-protecting myself, or otherwise going overboard. I don't get pissed off about it. Right now the decisions I make are for myself, what feels the most comfortable, and what makes me feel that I am the most fully engaged in my own care that I can be.. I hope (and suspect, actually) that what I will and won't do, what I will and won't eat, and what seems risky and what doesn't will shift back toward more- normal over time, but right now this is the phase I'm in, and is likely just one of many that I will need to get through.
I'm still scared. The tinnitus is intrusive and seems to rise to meet whatever the noise level is where ever I am at any given time. There are days when it gets the better of me. There are days when some outside noises are difficult to handle and days when those same noises aren't bothersome at all. Standing in the shower or running the kitchen faucet seem to be the only things that almost completely mask it. I know that five months in is still considered "early in the game." But I did finally want to post here and thank some of the people whose experience and compassion have been of massive help to me over these past five months.
Glynis has written some wonderfully encouraging and inspiring posts (I was sorry to read of your recent fall, and hope you are doing better). I Who Love Music posted the very interesting 'Back to Silence' thread, which gave me much to think about a few months ago when I found it. The success stories are wonderful to read, and give much needed glimpses at positivity in these early days. Michael Leigh's links to his story and information have yielded some ideas on methods of coping on a day-to-day basis. Even the folks who have rattled me have shown that, if nothing else, everyone's experience of this is different – that there's no one way to feel about this or handle it, and that all of it, ultimately is legitimate because it is how they are feeling at that moment.. How they express those feelings might even change from day to day, because that seems to be what happens with this thing. I can only say that, for the larger part, this forum and the people on it have sometimes been the difference between completely succumbing to fear, and being able to move past it just enough to keep the day going.
The other thing I won't do? I won't give it a capital "T." It's one of many oddball things that started early on. Abbreviating it as capital "T" gave it more importance than I wanted it to have. I get that's it's standard form on the forums, but for some reason it really helped me to just give it that lower case "t" whenever I wrote or thought about it.
There are other things I have been working with, but the post is already well past "too long." You will be relieved to know, if you've managed to get through this enormous, slightly overwrought and self-absorbed intro, that I will likely not be a frequent poster! I know that "less is more" (and I can be brief, when need be!) and I try not to obsess on the forums, just as I am trying not to obsess on the "t." However, there were some things I wanted to say after lurking for so many months, and to express my thanks to all of you who have helped on the days when things aren't going well. I hope that whatever I can add along the way will be of benefit to someone, just as so many of your thoughts and experiences have been of benefit to me.
My best to all of you.
I'm not sure how long a standard introductory to the forum should be, but I've been lurking here for a while and have finally gotten to the point where I wanted to say a few things. Scan down, and if this seems too long to bother with, feel free to skip – no offense taken! I promise, future posts will not be as hefty!
Tinnitus in the right ear set in at the end of last November. I was lucky in that I was able to get to a local audiologist right away and get a hearing test, which was read as borderline normal hearing with some high frequency loss. Ear wax was noted, and they required that this be looked at by my PCP in case it was just a matter of buildup and syringing to clear the problem. I was able to get this done quickly, and although the syringing did not solve the issue, I was then given a referral to an ENT, was seen in December and have been working with him and the audiologist in his office ever since.
First was a two-week trial and taper of prednisone, and a prescription for clonazepam for sleep. The prednisone did not work for me, and I hesitated about a week before I took the clonazepam for the first time because I was reluctant to take a benzodiazepine.
In the early days, there were periods when the tinnitus stopped spontaneously. Once for four hours, once for twelve, and then another couple of times for an hour or so. When it got to the point that it was hanging in there, I finally took the clonazepam. Oddly, within a half hour of taking that first dose (0.5 mg) the tinnitus faded to nothing. This lasted about four hours, enough to allow me the first night of sleep I had had in well over a week. It was back in the morning, and as tempted as I was to just take another pill, I didn't do it. I had read up on benzos, know they can be difficult to wean off, and although it has not had the same complete quieting effect it had that first time, it does seem to ratchet it down a notch before bedtime, so I still continue to take it for sleep, still at the original low dose (0.5 mg) and still with the benefit of approximately 5-6 hours of sleep, albeit interrupted. I know that, eventually, I will want to discontinue them, but right now, they are helping me. I've already discussed this with my ENT.
My ENT tried me on several different things, including amitriptyline (made me agitated so I only took it for a few days, although I wonder, now, if I gave it a good enough chance – I've read that some people have had some degree of relief with it while others have not) as well as a prescription for Gabapentin (have not tried it yet – again, so much conflicting info about these drugs and their efficacy and side effects) and recently a diuretic on the chance that there might be fluid in the ear (there is some ear crackling, although [at least so far] not the characteristic kind of "cotton in the ear" fullness I've read about, and only a couple of brief instances where I felt very slightly off-balance. I can't actually ascribe that to anything in particular, as there are several things that could have caused that, and there has, thus far, been no "classic" dizziness. I swallow and hear crackling, and at times (particularly in the morning) there might be a slight flutter of the drum on the left, but so far that is a brief and passing thing.
I have yet to pick up the Rx for the diuretic (spironolactone) but may give it a shot. I'm reluctant to pump myself full of too many drugs, but know that sometimes these things are trial and error.
I freely admit that I'm still in the throes of "spike fear." "If I take this, am I going to make it worse? If I don't take it, am I just wasting my own and my ENT's time?" Reading up on it sometimes confuses the issue for me, because the information ranges from varying degrees of success to horror stories. I have gotten some good food for thought from this forum on all of this, though.
In January, I began working with a white noise generator through the audiologist in the ENT's office. Again – very fortunate. I was allowed to try several different types over a period of a couple of months (Phonak and Seimens), and finally bought the Phonak Audeo B50-312 a couple of weeks ago. At the moment I am only working with the one generator, as the tinnitus has consistently been in the right ear, although recently it seems like it sometimes bounces over to the left. I have a LectroFan white noise generator that I use beside the bed at night, and have found several YouTube videos (again, via this forum) that have been of some help and that I use in the background during the day when I'm not wearing the over-the-ear WNG.
I like the Phonak because it can function as a straight hearing aid, hearing aid with WNG, or just WNG, and the volume is adjustable on all programs. I usually use the WNG at the lowest setting, as I have come to understand (again, thanks Tinnitus Talk!) that you need to be able to hear both the WNG and the tinnitus in order to move toward habituation. (I also know that best efficacy is probably to use two, but at the moment finances dictate the purchase of only one, and I have found it to be of some benefit – enough so that I decided I opted to shift some priorities around and buy one.)
It is always louder in the morning after waking up. It's louder after I remove the WNG for the day although I'm guessing this is not unusual. It's unpredictable and although there have actually been a few days when it seems less intrusive, it is always there, and I know I am thinking and worrying about it too much.
I've decided, in the meantime, as I work to get a hold of this thing, to do (or not do) a few things.
One: I'm not going to think about it in terms of "the rest of my life." I try, instead, to focus on what I need to do today – just today -- to manage it, with the understanding that there are just going to be things that are beyond my control. If I start thinking in terms of "the rest of my life," (which I was doing at the beginning) it's going to overwhelm me.
Another thing I have decided is to avoid the use of catastrophic language when talking about it. Again, in the early days, I went through that. I went onto forums and informational websites where people can leave comments, and was exposed to all of that. Some of it was the most frightening stuff I've ever read in my life. All it did was push me into a bigger place of fear.
When I decided to finally post here, I thought: "Someone is waking up with this for the first time, today. Someone is panicking, someone's anxiety has just gone through the roof, someone's life has just changed and they didn't even see it coming, someone is in pain. What if yours is the first post they ever look at on a forum and it's full of the same kind of stuff that caused you to go off the rails in your first weeks of trying to deal with this? What good will that do?"
I'm not saying it's easy. I'm not saying I've habituated. (I'm not sure I even understand the concept of habituation, but I'm trying.) I'm not even saying I'm handling it well from one day to the next. I'm not past the fear and everything else that comes with this. I'm not saying that it has ceased to be a struggle. I know there will be setbacks. I know I'm still thinking about it too much. But I also understand, now, in a way I didn't then, that there are things that can be tried to manage it right from the beginning, and that reading the posts on this forum that encouraged this approach were the ones that were the most helpful to me and kept me going.
Another thing I learned just from reading the hundreds of different comments here over the past few months: Just because something didn't work for one person, doesn't mean it won't work for another. And vice versa. I try to approach each new management attempt with as much objective information as I can get, both from my ENT, audiologist, and my own research (difficult on the internet!) and then make my choice from that. Ultimately, it's up to me what I will and won't do, and what seems worth the risk and what doesn't. I can seek advice if I want, but no one can make those decisions for me.
I have lost a good deal of weight. My appetite went, and I became concerned about "spiking foods" (another marvelous example of tons of research and no real agreement on what-to, how-to, and when-to!) In an odd way, it was reassuring to learn that several people here have gone through this and have since managed to get back to regular eating habits and to regain some of the weight they have lost. I still keep track of what I eat, looking for possible triggers, although some say that doing so is pointless. For me, it is useful right now, because it's something I want to explore as I learn to deal with this. I carry ear plugs and use them if I need them. If I'm in a restaurant, or (as I was recently) at a friend's birthday party and the environment becomes too loud, I leave. I don't worry that I'm "cheating myself out of a good time" or over-protecting myself, or otherwise going overboard. I don't get pissed off about it. Right now the decisions I make are for myself, what feels the most comfortable, and what makes me feel that I am the most fully engaged in my own care that I can be.. I hope (and suspect, actually) that what I will and won't do, what I will and won't eat, and what seems risky and what doesn't will shift back toward more- normal over time, but right now this is the phase I'm in, and is likely just one of many that I will need to get through.
I'm still scared. The tinnitus is intrusive and seems to rise to meet whatever the noise level is where ever I am at any given time. There are days when it gets the better of me. There are days when some outside noises are difficult to handle and days when those same noises aren't bothersome at all. Standing in the shower or running the kitchen faucet seem to be the only things that almost completely mask it. I know that five months in is still considered "early in the game." But I did finally want to post here and thank some of the people whose experience and compassion have been of massive help to me over these past five months.
Glynis has written some wonderfully encouraging and inspiring posts (I was sorry to read of your recent fall, and hope you are doing better). I Who Love Music posted the very interesting 'Back to Silence' thread, which gave me much to think about a few months ago when I found it. The success stories are wonderful to read, and give much needed glimpses at positivity in these early days. Michael Leigh's links to his story and information have yielded some ideas on methods of coping on a day-to-day basis. Even the folks who have rattled me have shown that, if nothing else, everyone's experience of this is different – that there's no one way to feel about this or handle it, and that all of it, ultimately is legitimate because it is how they are feeling at that moment.. How they express those feelings might even change from day to day, because that seems to be what happens with this thing. I can only say that, for the larger part, this forum and the people on it have sometimes been the difference between completely succumbing to fear, and being able to move past it just enough to keep the day going.
The other thing I won't do? I won't give it a capital "T." It's one of many oddball things that started early on. Abbreviating it as capital "T" gave it more importance than I wanted it to have. I get that's it's standard form on the forums, but for some reason it really helped me to just give it that lower case "t" whenever I wrote or thought about it.
There are other things I have been working with, but the post is already well past "too long." You will be relieved to know, if you've managed to get through this enormous, slightly overwrought and self-absorbed intro, that I will likely not be a frequent poster! I know that "less is more" (and I can be brief, when need be!) and I try not to obsess on the forums, just as I am trying not to obsess on the "t." However, there were some things I wanted to say after lurking for so many months, and to express my thanks to all of you who have helped on the days when things aren't going well. I hope that whatever I can add along the way will be of benefit to someone, just as so many of your thoughts and experiences have been of benefit to me.
My best to all of you.
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