Introducing Myself at Five Months In...

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.

 

@Mystery Reader ,
Welcome to Tinnitus Talk and lovely you felt like posting and joining in threads.
I am glad you like my posts and hope enjoy your time on here.
Love glynis

 

@Mystery Reader
Welcome to Tinnitus Talk! I am sure you will find it useful and a great support. I know I have.
A couple of thoughts that I have after reading your post.
I share your concern on benzos. Certainly is common that they do have the affect of reducing the volume of the tinnitus, but with the unfortunate side effect of potential addiction. Your dose is quite low, but you would still want to be careful when you do try to stop it.
I very occasionally use them too.
I used to worry about foods and things that spiked my tinnitus. My reality now is I don't worry because nothing actually does. The good news is that if you find something spikes your tinnitus, then the spike usually goes down.
Do you have sound sensitivity? I believe that the tinnitus "reacting" to certain sounds could be an element of hyperacusis. Again, this is frustrating, but normal.
White noise generators are great. I use them to, hardly ever now that I am slowly habituating. I have mild-ish tinnitus, and I prefer to fully mask mine. So I do, even though this goes against the general advice.
I hope you'll stick around and contribute, you write very well and are very thoughtful.
Samantha.

 

"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."

Mystery Reader, I couldn't have said that better myself. I look forward to hearing of your progress and learning from you. You clearly have a grasp on how to get through this and move on with life.

 

@glynis

Thanks for the welcome! Your postings here have helped me through these first months more than you can likely even imagine. Thanks for your compassion and uplifting attitude. I hope you are feeling better after your recent fall.


@Samantha R

I suspect there probably is an element of hyperacusis here as you say, although there are some days where it doesn’t seem as apparent. I’m taking precautions in the meantime. As to the benzo, I know I’ll need to start weaning off that soon (I’ve been consistently taking it since January), but luckily have not felt the need to increase the dosage yet. If it gets to that point, then likely that’s the signal for me to start the discontinuation process. It is the only sleeping aid that has helped thus far, and although I rarely get more than 5 hours of sleep, I’ll take that right now! Sleep has been difficult right from the get-go. I have told my ENT that I know I’ll have to wean off it, though, and will work with him on the best way to do that when the time comes. In the meantime, (as tempting as it is, sometimes, to just add another quarter-pill to the dosage when I want to fall asleep faster) I’m being cautious with it, and sticking to the original dose. Thanks for your response, and I’m glad the WNGs have helped you! I use a LectroFan unit by the bed at night, which has also helped in these early months. Thank you for your response!


@New Guy

It looks like we’re both ‘new guys’ here on the forum. I’ve read through your threads and have found many similarities in terms of the emotional responses encountered, but it seems to me that, at less than two months in, you are really determined to get a hold of this thing, put it in its place, and move on. I’m trying to stay on that road, myself, although it’s a day-to-day challenge –some days are more successful than others. Both being ‘new guys,’ perhaps we can share part of this “t” journey together. There’s great support here on the forum!


Thank you all for your responses.


Mystery Reader

 

@glynis - my PM correspondence with @TracyJS is now disallowed.
Can you help resolve it for us.
Ta
Jazzer
Dave

 

@Jazzer your conversation pm is turned off,make sure you have it turned on and except pm's from members and none members if you want that also.
Love glynis

 

If you visit the American Tinnitus Association website, you will be invited to enter your email address and will receive a free electronic copy of their publication, Tinnitus Today. The entire issue is about Habituation. If habituation is a bit of a mystery to you then this may fit nicely into your genre! Best Wishes. -TC

 

@TuxedoCat
Thank you for that information

 

@Mystery Reader , @emmalee , @Ed209 , @jjflyman , @john paul , @Holly1987 , @HCR123 , @Luman , @John Meyers , @PortalNaut , @DBT , @Bill Bauer

@Michael Leigh Told me once that we shouldn't try for too much in the first 6 months. Our t is still evolving and our reaction to it is very emotional. I'm sure I said that wrong but that is how I feel about the first 6 months (Only 2 months so far for me).

I think I initially was trying too hard to find a solution and that comes across in my earlier posts. If there's a problem I try to solve it. I knew t kicked me to the ground and laughed at me. I knew I was depressed and anxious. I knew I had to move forward to try and find some relief.

One simple tip I gleaned from the TT was to use background noise slightly below the t to mask it. While this is painfully obvious to people with t new guys like me never heard of the concept. I was sitting in a quiet room of my house listening to this screaming EEE and doing nothing about it. The thought of hearing that the rest of my life was terrifying, it was paralyzing. I dreaded going to bed because I would be alone with my t.

I would carry my cat upstairs and put her on the bed and pet her to soothe myself and try to get my mind off my t. Her purring helped but I was trying to do anything I could to get my mind off of t. Do something you enjoy! I enjoy petting cats.

Once I learned about Sound Enrichment I jumped on board. Why would I subject myself to the torture of listening to my t when I didn't have to? That was half the battle right there.

I still haven't figured out how to walk into a room with no background noise. My t amps up but luckily I'm starting to get used to it so it's not as much of a fear response. I still intently listen to it (Which is wrong, I know) to see if it's changing.

What I'm trying to say is I haven't got a hold of this thing. I'm still very much in the dark (I got teary eyed when I typed that sentence).

I'm learning what I can from this site and trying to put it into practice. Right now I'm seeking quick fixes. Sound enrichment, do what you love, take it one day at a time, it's ok to be emotional, it's ok to take antidepressants if you need them, try to get back to work if you can, don't do anything drastic.

I'm also a hypocrite. I want to write a success story that my t went away after so many months or years. I want to come back here and share my success story. I want to help people with t but not have t. I feel like a bad person for saying that but it's the truth (I weeped aloud when I typed this paragraph).

Please don't think I've got it all under control. It's ok for me not to have this thing under control and it's ok for you not to have it under control too.

In time we'll get better at it.

 

Have you experienced any fading?

 

The EEE sometimes turns to a hiss/static noise. The hiss/static started to last 10-15 minutes but can go up to an 1-2 hrs now. Once in a while the EEE completely turns to a lower static and leaves me with high pitched crickets. These are my most hopeful moments when I have them.

 

You’re on the right path new guy and I just know that you will be fine.

 

@New Guy

I’ve had mine for three weeks now. I get the high pitch eeee noise then it shifts to static inside my head. This happens throughout the day. Then it’ll be silent when I don’t pay attention. It repeats itself throughout the day. Hopefully we are in the road to recovery???

 

"Please don't think I've got it all under control. It's ok for me not to have this thing under control and it's ok for you not to have it under control too.
In time we'll get better at it."

@New Guy
Everything in your response is so familiar to me. What I really liked about your initial thread was that, despite being in the initial upheaval of t, there was a determination there to get a handle on it and move forward. I'm trying to go that route, myself. The past couple of days have been challenging -- earlier in the week, there was a "better day." The emotional aspect of this thing is as unpredictable as the t itself, and I'm trying to learn to ride it out and learn something -- anything -- from that. I agree with you -- "In time, we'll get better at it." I'll keep up with your threads to learn how you're progressing.

Mystery Reader

 

I didn't notice that in my initial thread but I'm glad you did. It means a lot that you're getting something from my time on this forum besides what a wreck I feel like.

I had no idea I was capable of such emotion until I got t. I said somewhere else on this site that TT is the only place where a man can admit he cries and no one will think differently about him.

It's great you're noticing progress. From what I've read progress comes very slowly but any sign of progress is good because that means it can continue.

I look forward to our time together on TT.

 

@New Guy

Please, you are not a hypocrite, you are human and you are allowed to feel what you feel. How wonderful that you can come here and express your emotions and thoughts to others who absolutely feel the same way.

Let the tears flow, this is how your body comforts you.

My "up day" yesterday was short lived.....the T is back to its old self today. Better days are ahead for both of us, patience is needed, lots and lot of patience.

I appreciate your honesty New Guy. Thanks for the post.

emma~

 

@Chris M

I'm still the New Guy but the EEE changing to static sounds like a good thing to me. Only time will tell for both of us.

 

@New Guy are you able to sleep through the night?

 

@emmalee

A little progress is always a good sign. Thank you for accepting my emotions. I think we've been taught to hide emotions so we don't share how hard this is with each other.

I hope you have another good day soon.

 

@Chris M

Yes, I sleep though the night but I don't go to bed as early as I used to. I stay up until I'm exhausted then go to bed and crash. I get 6-8 hours of sleep a night with no meds and may wake up once or twice but fall right back to sleep. If you don't have a sound machine next to your bed you should get one. If my t went away tomorrow I would still use a sound machine to sleep. I enjoy any form or rain or streams. Not a big fan of the ocean or trains.

 

I love this, so much truth, I feel you man. Iv had periods of anxiety and depression in my life but it really did go to the next level for a while with this condition. Iv always tried not to dwell on it by not looking for ways to treat it, I'm just that way inclined but even i was considering asking the doctor for something just incase i needed it. My anxiety was off the charts for a good couple of months. Then the depression kicked in all i wanted to do was sleep the day away that was maybe 2 months ago i felt like a total basket case, but i seem to be coping much better now that ive noticed more improvement. Iv read about people with noise induced T that only started to see improvement around 8 months in but then were pretty much ok after 18 months. I was always negative thinking my time is running out for this to go away but I'm learning that there is no time limit, it just will get better in time. It either dissolves completely or dissolves enough for our brain to adapt to it and push it somewhere out of our sound scape. The most important thing for me now at the stage I'm at is to not obsess over it, which is some sort of magic trick in its own right i feel. I feel like if i was not totally clued up on Tinnitus i may not even realise there was anything wrong some of the time. Not always but its getting more and more that way. I slept all week without masking which for me is all the encouragement i need for now.

 

@New Guy you're a wonderful and kind man who has taken the time to chat to me during dark days. You're doing so well and I appreciate you very much. Stay strong xxx

 

@john paul

I couldn't imagine sleeping without masking. You're doing great and giving me hope.

I almost asked for meds too and I assure you I would, and will, if needed.

I had a day about a month ago. It was a rainy day. I woke up, didn't bother taking my PJ's off and I lay on the couch in front of the TV and watched two morning movies. I didn't want to move. The fight was gone.

@Holly1987

Chatting with you helps keep my mind off of things. I believe you when you say they're dark days but I don't see it when we chat.

 

@glynis @New Guy @TracyJS @emmalee @Samantha R @TuxedoCat
Head CT scheduled for this coming Friday - no contrast, so relieved about possible spiking in that regard. Not allowed to use ear plugs, but have heard CT is quieter than MRI. Some noise sensitivity lately, so will bring the plugs for before and after. Had three good smacks to the head over the past year and a half (moved into an apartment with slanted ceilings and stood up right into them, one collision, which, in retrospect, might have actually resulted in concussion) so ENT wants to run the test. The t started well after these events, but worth checking anyway, I think. Got the call today and happy it was able to be scheduled so quickly. Not sure what, if anything, it will find, but probably good to be getting one done. Just letting you folks know as you have been so supportive since I joined up, and wanted to thank you for that, again. Hoping it was a better day for all on the forum today.

Mystery Reader

 

I hope everything comes out ok for you.

 

@Mystery Reader
Sounds like getting a CT Scan is a good idea.
Good luck and let us know how it goes.

 

@Mystery Reader
And thanks again for being supportive of me

 

@Mystery Reader
Good luck with the CT scan.
Sounds like a good idea to have it done. Your ENT sounds very thorough.
No, they are nowhere near as loud as an MRI, so you should be fine with noise.

 

Good luck with your CT scan.
I had 2 a couple of years ago on my head while in hospital and went on fine.
let us know how it goes.
Love glynis