Two Weeks In and Struggling...

[Tommy Hill]

I see, got it. I shouldn't have been so cavalier about the idea of hoping for a tumor. Being in that situation, as you would know, is no joke. But I'm happy to hear you say "life is good". The t situation will improve, I bet. There is certainly excellent reason to be hopeful.
By the way, can I propose to everyone that we refer to our condition as Pete Townsend Syndrome from now on?!?Just sounds so much cooler.
Best...

 

[Piper the great]

Tommy, I have a hearing aid that plays fractal sound random in my T ear.. didn't like, did Neuromonics, (not pushing it) because I need to believe I was doing all that I could, to be positive, and stay positive, and it worked for me, but I would tell others to just get a good mix of music and some bosie ear buds ($100.00) worth every penny and MP3 player and do it 4 to 6 hours a day.. to break the brain from listening to the T, and also give you a break.... I had a white noise ear buzzer, hated it worse than the T... but time, time, time, time..... and don't hate the T, it will hate you back ten fold...... and it will seem to get better, its all a perspective, because its not even a freaking real noise..... or should I say a percussion wave..... and lean on your family and anyone close... it helps

 

[Tommy Hill]

Thank you PTG, I really appreciate your suggestions. And yes, I'm making friends with it. Actually, I don't even see it as an outsider now, simply part of myself. Makes it much easier. After all, there are plenty of things about myself I'm not crazy about, this is just another one!
And you're also right, there's nothing really there to be bothered by! From the Buddhist point of view, it's just empty vibration. Easier said than done, of course, to experience it that way, but good to keep in mind.
Cheers my friend!

 

[awbw8]

Hi @Tommy Hill . Well let me say it really seems like you have the right perspective from your first (and following) posts. I can promise you I wouldn't have even been able to write a post like yours in my first two weeks of tinnitus - I was a complete and utter mess. However, 11 months later, I really am fine. I'm sitting at work and I can hear the ringing, but it's just a part of my silence now, not a violent intruder. I, too, had that feeling that tinnitus was some kind of karmic punishment. I had that feeling that it was not going to go away in my gut. It hasn't gone yet, but it's not a punishment either. It's been a teacher, though I wouldn't have been able to say that with much warmth in my heart a year ago.

As all the wonderful people here have said, you will likely have ups and downs, be patient with yourself. It will take time and work for your brain to adjust, but it will happen if you keep positive and calm. It sounds like you're already doing a lot of good things for yourself and have the right mindset. I think the best advice I can give after my experience is to look at two possibilities, habituation and remission. Either one is a cure, and to me, habituation has been more of a blessing in some ways. I think if mine had gone away after a month or so of panic, I would have lived the rest of my life fearing it would return. As it is, I've grown to know I can live with it. As you said, this can be an opportunity for growth and from what you've written, you seem like the kind of person who will take this in stride as much as anyone can and reach one of those positive ends in time. Just know that it will get better, one way or the other. So many of us were suicidal and having panic attacks (me at least) and now life is more or less normal, if different.

You're among friends and lots of knowledgeable, caring people here as you've seen. Take care of yourself and always feel free to reach out.

Also, I'm in NYC, too. So feel free to message me on here if you need any psychologist (I know one who has tinnitus and is an angel), doctor, ENT, audiologists, acupuncturists etc. who are good, caring people. It took a lot of trial and error for me to find them, and if anyone can benefit from that hunt, and be spared a couple uncaring doctors and wasted co-payments I'm more than happy to share.

 

[citigirl13]

Hey Tommy.

T is really difficult to deal with. I got mine about seven weeks ago, but I'm telling you now that my T has gotten a ton better. After going to three doctors one of them finally saw fluid in my ear (no surprise to me as I could hear whenever I turned over in my sleep). He told me that there was nothing really I could do, keep trying to clear my sinuses (I had a cold which led to the onset of T) and that it was likely to disappear, so don't worry. Easier said than done, right?

But it does get better. I had one week of pure hell where I was actually throwing up because I was so scared. I got the shakes too. But I forced myself to remain positive. Don't get me wrong, I have had my bad days since then. But people on this forum have been lifesavers. I would be a huge mess if I hadn't found it.

Remember: plenty of people in the world get T, but for most of them it goes. And for the people who it stays with, most of them habituate with it. I believe that most people live a good life with T. The onset of T is UTTERLY terrifying and you are right to be scared. You are allowed to cry and rant and get mad and get upset. But keep in your mind that this isn't a death sentence. You can live with this. And for a lot of people the volume of T goes down - I will tell you that mine was incredibly loud at first, but it has gone down. There are some times that I can barely hear my T. So keep the faith. Things will get better.

My doctor also told me that in a year he sees 26 people with T; out of all of them only one actually ever sees the specialist. Those statics are promising. And remember that when you read scary statics, they don't matter to the individual. You could easily get rid of the this and it could all be a horrible memory.

And even if this doesn't go, a lot of people habituate to the noise. I have noticed that even when I am in a silent room, if I am into what I'm reading I don't really notice it. Again it takes time, but you get used to the noise so it's more or less a new version of silence. I know you're thinking "I don't want to get used to it - I want it gone!" I still think the same and to be honest the only way I get through it is that I believe my T will go. But the truth is that plenty of people live with T and don't even care about it.

I would suggest seeing a specialist to make sure there is nothing wrong with your ears, try to keep healthy and don't expose your ears to loud sounds/noisy places e.g. concerts, clubs, noisy restaurants etc. Hopefully yours will disappear. Be aware that this can take time - some people have T after eight, nine months, some people after two years or so. You will read that some doctors consider T to be permanent after 6 months, but I have read stories where people have had it leave after that time has passed, so don't panic. Take one day at a time and try not to stress about it.

Good luck and keep us posted!

 

[Tommy Hill]

Hey Tommy.

T is really difficult to deal with. I got mine about seven weeks ago, but I'm telling you now that my T has gotten a ton better. After going to three doctors one of them finally saw fluid in my ear (no surprise to me as I could hear whenever I turned over in my sleep). He told me that there was nothing really I could do, keep trying to clear my sinuses (I had a cold which led to the onset of T) and that it was likely to disappear, so don't worry. Easier said than done, right?

But it does get better. I had one week of pure hell where I was actually throwing up because I was so scared. I got the shakes too. But I forced myself to remain positive. Don't get me wrong, I have had my bad days since then. But people on this forum have been lifesavers. I would be a huge mess if I hadn't found it.

Remember: plenty of people in the world get T, but for most of them it goes. And for the people who it stays with, most of them habituate with it. I believe that most people live a good life with T. The onset of T is UTTERLY terrifying and you are right to be scared. You are allowed to cry and rant and get mad and get upset. But keep in your mind that this isn't a death sentence. You can live with this. And for a lot of people the volume of T goes down - I will tell you that mine was incredibly loud at first, but it has gone down. There are some times that I can barely hear my T. So keep the faith. Things will get better.

My doctor also told me that in a year he sees 26 people with T; out of all of them only one actually ever sees the specialist. Those statics are promising. And remember that when you read scary statics, they don't matter to the individual. You could easily get rid of the this and it could all be a horrible memory.

And even if this doesn't go, a lot of people habituate to the noise. I have noticed that even when I am in a silent room, if I am into what I'm reading I don't really notice it. Again it takes time, but you get used to the noise so it's more or less a new version of silence. I know you're thinking "I don't want to get used to it - I want it gone!" I still think the same and to be honest the only way I get through it is that I believe my T will go. But the truth is that plenty of people live with T and don't even care about it.

I would suggest seeing a specialist to make sure there is nothing wrong with your ears, try to keep healthy and don't expose your ears to loud sounds/noisy places e.g. concerts, clubs, noisy restaurants etc. Hopefully yours will disappear. Be aware that this can take time - some people have T after eight, nine months, some people after two years or so. You will read that some doctors consider T to be permanent after 6 months, but I have read stories where people have had it leave after that time has passed, so don't panic. Take one day at a time and try not to stress about it.

Good luck and keep us posted!

Thank you so much. All your advice is incredibly helpful and encouraging. It absolutely breaks my heart to think of the suffering this condition causes so many people. The thought of someone vomiting from fear just makes you want to cry. And yet, your message to me proves that one can move from a low point like that to a place where you are able to give others going through their own darkness reason to be hopeful and optimistic. And that is a very great gift. The greatest, in fact!
My latest news is that the MRI of my brain revealed no neuromas that could account for my symptoms, but did show sinus inflammation that would be worth addressing. So for that reason, I will likely be put on Prednisone when I follow up with my ENT this week. I'm trying not to get my hopes up, and honestly, I have a hard time believing that what I've been experiencing for a month now can be explained by sinus pressure, but I will just have to go along and see what comes of it.
Thank you again, so much.

 

[citigirl13]

Thank you so much. All your advice is incredibly helpful and encouraging. It absolutely breaks my heart to think of the suffering this condition causes so many people. The thought of someone vomiting from fear just makes you want to cry. And yet, your message to me proves that one can move from a low point like that to a place where you are able to give others going through their own darkness reason to be hopeful and optimistic. And that is a very great gift. The greatest, in fact!
My latest news is that the MRI of my brain revealed no neuromas that could account for my symptoms, but did show sinus inflammation that would be worth addressing. So for that reason, I will likely be put on Prednisone when I follow up with my ENT this week. I'm trying not to get my hopes up, and honestly, I have a hard time believing that what I've been experiencing for a month now can be explained by sinus pressure, but I will just have to go along and see what comes of it.
Thank you again, so much.

Hey @Tommy Hill

I know what you mean - I can't believe that my T is still around because my sinuses have been blocked up. I think what happened was my sinuses got blocked which led to a fluid-build up. Seems like such a silly thing to cause this, but it's true. I have had pressure headaches and it's only a few weeks since they have become less frequent. I cannot believe it takes this long to get sorted. But my mum told me about a friend of hers who experienced dizziness/vertigo after a cold, and it took her about 6-7 months until that went away. At one point she fell to the floor and couldn't get up, and had to call her husband home from work.

I think it is a good sign that you have this sinus inflammation - it explains why you have T and hopefully once it has been taken care of your T will go. Good news that you do not have any tumors either. Hopefully it will go once your sinuses get better.

I know it is hard to believe but people can get through the "dark" period where they are not bothered about the T. I must admit I can get annoyed at mine - "when is it going to go already?" - but it is a far cry from when I would collapse in a heap upon hearing it. I still have bad days but like I said, mine is decreased in volume and I am hopeful it will pass. Just have to wait it out.

Glad to hear the good news about your MRI scan! Keep us posted!

 

[Tommy Hill]

Hi @Tommy Hill . Well let me say it really seems like you have the right perspective from your first (and following) posts. I can promise you I wouldn't have even been able to write a post like yours in my first two weeks of tinnitus - I was a complete and utter mess. However, 11 months later, I really am fine. I'm sitting at work and I can hear the ringing, but it's just a part of my silence now, not a violent intruder. I, too, had that feeling that tinnitus was some kind of karmic punishment. I had that feeling that it was not going to go away in my gut. It hasn't gone yet, but it's not a punishment either. It's been a teacher, though I wouldn't have been able to say that with much warmth in my heart a year ago.

As all the wonderful people here have said, you will likely have ups and downs, be patient with yourself. It will take time and work for your brain to adjust, but it will happen if you keep positive and calm. It sounds like you're already doing a lot of good things for yourself and have the right mindset. I think the best advice I can give after my experience is to look at two possibilities, habituation and remission. Either one is a cure, and to me, habituation has been more of a blessing in some ways. I think if mine had gone away after a month or so of panic, I would have lived the rest of my life fearing it would return. As it is, I've grown to know I can live with it. As you said, this can be an opportunity for growth and from what you've written, you seem like the kind of person who will take this in stride as much as anyone can and reach one of those positive ends in time. Just know that it will get better, one way or the other. So many of us were suicidal and having panic attacks (me at least) and now life is more or less normal, if different.

You're among friends and lots of knowledgeable, caring people here as you've seen. Take care of yourself and always feel free to reach out.

Also, I'm in NYC, too. So feel free to message me on here if you need any psychologist (I know one who has tinnitus and is an angel), doctor, ENT, audiologists, acupuncturists etc. who are good, caring people. It took a lot of trial and error for me to find them, and if anyone can benefit from that hunt, and be spared a couple uncaring doctors and wasted co-payments I'm more than happy to share.

Hi... Thank you for your kind and supportive words. They are incredibly uplifting for me, so I thank you from the bottom of my heart.
So happy to know that you are also a New Yorker (or at least living here now) and if not a fellow meditator/ practitioner, a fellow Pema fan at the very least!
I would love to take you up on your offer to share some resources. I actually have a pretty great team forming around me now, so you never know, perhaps I could recommend someone to you as well.
Could I ask you to message me? I couldn't quite figure out how to do it. Like I said, I'm not part of the Facebook generation and sites like this are not my native terrain. I get easily lost.
But again, thank you for taking the time to reach out.
Hope to hear from you if you have the chance...
Bows...

 

[Jeff M.]

Hey Tommy,

I just now read your initial post. How are you doing now?? Coping any better?? It was a trip to read your post, because when my T first set in (about a year and a half ago), I was thinking the exact same thing about hoping to have a tumor!! My wife thought I was nuts, but I went in for an MRI hoping for a tumor that could be removed (I guess that kinda is nuts HOPING for a brain tumor!!). But that's how gnarly T can be, especially early on!!

With me, no tumor, and no silence. But I am living and coping with it WAY better!! I hope and pray you are doing better too!! If not, you will soon!!

Best to you!!

 

[Tommy Hill]

Thanks Jeff. I bet we're not the only ones to have had that same thought. I actually just got the MRI results and as expected, all clean. Except for some sinus issues that I'm going to talk to my ENT about tomorrow. He said over the phone he wants to give me an anti-inflamatory like Prednisone to treat it, might buy some relief fro the t symptoms.
In any case, it's always so encouraging to hear from people like yourself who let me know that in time, you will learn to cope with it to a much greater degree, and those early days of fear and torture will seem like a nightmare that passed.
And to your question, yes, I am doing better now, much better. But I don't want to kid myself and pretend I wont still go through more ups and downs. But the trend right now appears to be up.
Spring is making a brief appearance here in NYC today, with temps in the 60's, after the longest, toughest Winter any of us can remember. Got out on the bike, riding around the city, best therapy I've had in a long time. Probably like surfing for you.
Thanks man!

 

[Ray Seddon]

Hi Christine - love the emoticons!
Could you also send me details of your white noise generator? Did you get the sounds custom-made to your T, or is it generalised noise? I'm also listening to Stevearrison's T Talk Player, but I'd really like something that is customised to my particular T. Generalised white noise has helped with some of my T but not the high-pitched whistle. Any details you can send re your machine would be greatly appreciated. Trouble is, I don't know what is best for me. Trial and error I guess. Good to know you guys are all out there... "We are not alone!!" Cheers Christine and thanks.

 

[ned sydney]

Hi Tommy,

in July last year I noticed ringing in my ears. It wasn' bad at firstand I wasn't too concerned. The more I googled and read about tinnitus the more I began to fear that there was no cure and I could find a single person who said it had got better or gone away. The ringing also got steadily worse. I saw 2 doctors and finally an audiologist. I was prescribed some histamine drugs that did nothing to help. I was also taking antihistamines taht the audiologist said to continue as i thought it may be related to hay fever. Unfortunately these did not help either. I was despondent.

I stopped taking the drugs and resigned myself to the fact I would always have it. A few months after that I noticed I had stopped thinking about tinnitus and in fact that it had got a lot better. Now I would say it has gone away entirely. If I listen very hard in the quiet I can maybe notice a sound but I probably could before the tinnitus so I would say I am better. I just wanted to tell someone this as I could never find a good news story! There were a few things I did to help but not sure if it was them or time that healed, one was to stop holding my nose when I sneezed! I used to do it all the time. All that pressure shooting into my ears was surely bad! I also suited water up my nose a few times then equalized to push it into my ears and clean them. The other weird thing I did was rubbed a crystal glass to make it sing and held it up to my ears!

Anyway. It can and will get better. Hang in there, you will be OK.

Ned

 

[Tommy Hill]

Hi Tommy,

in July last year I noticed ringing in my ears. It wasn' bad at firstand I wasn't too concerned. The more I googled and read about tinnitus the more I began to fear that there was no cure and I could find a single person who said it had got better or gone away. The ringing also got steadily worse. I saw 2 doctors and finally an audiologist. I was prescribed some histamine drugs that did nothing to help. I was also taking antihistamines taht the audiologist said to continue as i thought it may be related to hay fever. Unfortunately these did not help either. I was despondent.

I stopped taking the drugs and resigned myself to the fact I would always have it. A few months after that I noticed I had stopped thinking about tinnitus and in fact that it had got a lot better. Now I would say it has gone away entirely. If I listen very hard in the quiet I can maybe notice a sound but I probably could before the tinnitus so I would say I am better. I just wanted to tell someone this as I could never find a good news story! There were a few things I did to help but not sure if it was them or time that healed, one was to stop holding my nose when I sneezed! I used to do it all the time. All that pressure shooting into my ears was surely bad! I also suited water up my nose a few times then equalized to push it into my ears and clean them. The other weird thing I did was rubbed a crystal glass to make it sing and held it up to my ears!

Anyway. It can and will get better. Hang in there, you will be OK.

Ned

Thanks Ned. It is indeed heartening to hear a story like yours. It gives us hope, and I'm sincerely happy that you were able to put your experience behind you. It is rare, but can and does happen.
I had a pretty good day today, and a good night's sleep last night. Now, though, it's really cranking up again. Ah well, I'll just stay calm and carry on!
Cheers Ned, I really do appreciate your encouragement...

 

[Tommy Hill]

Tommy
Not sure what they have in NY (probably a lot) but I got my hearing aids with white noise generators in Nebraska; I was in such a messed up state-of-mind when I landed there that I had no idea how they compared to other devices. I'm finding out they are state of the art (truly exceptional); I was just very glad they offered instant relief. I've used mine continuously for a year (my T was in the profound range); I'm habituating just fine now (whew!).

If you're curious contact Nebraska Hearing Instruments (Omaha, NE) @ 402-933-1453 (mention my name if you want -- hopefully they don't hang up immediately ). They can likely refer you to an office in NY.

Mark (McDill)

Hey Mark... I wanted you to know that, thanks to you, I've been in touch with the guys from Nebraska Hearing Instruments. I gave them a call and they couldn't have been nicer and more willing to help. In fact, Ed called me back from the road, where he was out making house calls. I mentioned your name and of course they said they know you well and spoke highly of you.
Anyway, I think I've found a place here in NYC that offers the same kind of treatment that they do, as far as in-ear devices like the one you got and a program of how to use them for maximum effectiveness and habituation. I'm eager to get started, as my symptoms have recently intensified, but in the meantime, those Granger boys have really blown me away with their knowledge and willingness to help. They are a great resource, and I thank you for passing their contact along to me!
All the best... hope you're well.

 

[Jeff M.]

Thanks Jeff. I bet we're not the only ones to have had that same thought. I actually just got the MRI results and as expected, all clean. Except for some sinus issues that I'm going to talk to my ENT about tomorrow. He said over the phone he wants to give me an anti-inflamatory like Prednisone to treat it, might buy some relief fro the t symptoms.
In any case, it's always so encouraging to hear from people like yourself who let me know that in time, you will learn to cope with it to a much greater degree, and those early days of fear and torture will seem like a nightmare that passed.
And to your question, yes, I am doing better now, much better. But I don't want to kid myself and pretend I wont still go through more ups and downs. But the trend right now appears to be up.
Spring is making a brief appearance here in NYC today, with temps in the 60's, after the longest, toughest Winter any of us can remember. Got out on the bike, riding around the city, best therapy I've had in a long time. Probably like surfing for you.
Thanks man!

Yo Tommy,

Glad to hear you are on an uptick!! Yes, you will learn to cope with it better . And Yes, you will still have rough moments for awhile . There are still times that I break down, freak out a bit, or get pissed. But they are fewer and more far between, and shorter in length.

Also glad to read about and eager to hear how those in ear devices work for you!! I hope they bring you some relief!!

Best to you!!

 

[Mark McDill]

Hey Mark... I wanted you to know that, thanks to you, I've been in touch with the guys from Nebraska Hearing Instruments. I gave them a call and they couldn't have been nicer and more willing to help. In fact, Ed called me back from the road, where he was out making house calls. I mentioned your name and of course they said they know you well and spoke highly of you.
Anyway, I think I've found a place here in NYC that offers the same kind of treatment that they do, as far as in-ear devices like the one you got and a program of how to use them for maximum effectiveness and habituation. I'm eager to get started, as my symptoms have recently intensified, but in the meantime, those Granger boys have really blown me away with their knowledge and willingness to help. They are a great resource, and I thank you for passing their contact along to me!
All the best... hope you're well.

Tommy
Awesome dude!! It really makes my day hearing I may have been a help to someone.

Ed Granger is a very unique and amazing individual; I 'won the lottery' when I crossed his path (a year ago when I got hit by the T-express). He 'talked me off the ledge'.

So glad to hear!

Mark