I'm Gutted tonight - rejected for ANM as I'm too anxious...

[Louise]

Scored 2% too high on the anxiety questionnaires. So I was tipped out onto the street crying with my T screeching. But that's the life of a T SUFFERER though isnt it? Just part and parcel. Anyway, got back and turned TV on and flicked around to alight on the Music Channel (which Ive never done since the onset of T) but who should be on but my favourite band? So, I've indulged myself at a VERY LOW volume to the following first link, and then after this a link to one for the Ladies - feast your eyes girls.....

 

[jazz]

Sorry about missing out on the trial!

I wonder what type of correlation they used to reject severely anxious people?

There's just not enough clinical trials for people with tinnitus. But researchers are making progress with this disease! That's what you have to remember. The TRI will be meeting in May; maybe new clinical trials will come from the meeting. This year, the TRI's emphasis is on treatment. That's very positive, for it suggests more immediate action--rather than many years off!

Most people need relief today, while waiting for tomorrow's cures.

Hope you're feeling better tommorow!

 

[Hudson]

It seems like all the worthwhile trials are taking place in Europe. lol

I don't care if they happen on the moon if they lead to some meaningful treatment for us!
I hope you feel better. I am truly sorry about them disqualifying you for some stupid 2% anxiety.
If you're ever in the states and would like to listen to some metal quietly with someone, I'm game! Haha
I'm a big Alice in Chains fan too. The 5th marks 11 years since the passing of Layne Staley and 19 since the passing of Cobain.... I wonder if those guys had Tinnitus. They probably did.

 

[Louise]

Thanks you two. Im still gutted this morning. Had to drink a lot of wine last night to deal with it. Hence the silly post above. Think I'm going to try and delete it. Its had 69 views though so probably too late!

2%.... 2%.... that's just a couple of questions answered too high. Thats a 4.5k treatment and it would have been free and with total experts in T. I loved talking to the research Fellow yesterday about T mechanisms. But, I've blown it.

Ha, I would like to listen to some metal with you if I am in the US. Especially if you are any of those two in the pic

I thought you were going to say Alice.... Cooper! Of whom I am a fan! Just showing my age there I think

 

[Hudson]

As fruitless as this statement must seem, I'll say it anyway: even though you were rejected on a technicality like that, we have to find some solace that there's actually human trials taking place on meaningful treatments that have been shown to have marked improvement in animal studies. In 2003, there wasn't much going on for human trials at all... it was depressing.

I chose that picture as my 'avatar' because it was me back in 06 or 07 on the right. I had tinnitus then, and I didn't care about it at all. We were going out camping (the trailer in the back was probably 1 of 4 buildings in this 1 horse town, a last stop heading up this canyon for a camping trip in the Coeur d'Alene mountains) and I could have cared less about any tinnitus. Granted, I was drinking a fair amount of beer back then haha. So this was probably 3 or 4 years into my tinnitus, and I think I had pretty much habituated to it. I knew it was there, and I didn't care. I like it, because it reminds me that we do really habituate to it after a while. Now, fast forward to now, and whether my tinnitus is slightly worse or it's me stressing about it that's made it worse, I don't know for sure. But from an outside perspective, I find it interesting how quickly a couple days of worry snowballed into exactly the same terrible anxiety about tinnitus I had when I was 18 in 04. It's like my brain never forgot that ability to have bone crushing worry over this stupid sound, and some old 'channels' were reawakened for another romp. I've known lots of old timers who have 'bad' (although that can be relative) tinnitus and have had it for years, some since Vietnam. They say they don't like it, but it doesn't intrude on their thoughts or lives. They certainly aren't posting about it on the internet! If they can do it, I tell myself, so can I.

I signed up for the Microtransponder list... when they start trials for that I'll at least look into it. We're not like the UK here... Dallas, Texas is a solid 13 hour drive from where I live, so I'm hoping maybe they'll use a site somewhat near me as a test site. If they do contact me, I guess that would be the time I would have to think about if I really want a device implanted in me, and if it's worth it to me. That's if they accept me... there's a lot of "ifs" as you may know. Chin up Louise, those trials are Russian Roulette anyway, you may have gotten a placebo and then seen no improvement. Then you would have been crushed that yet another treatment is a failure. Maybe it's a blessing in disguise, because you might possibly participate in something more encouraging soon!

 

[Louise]

I find it interesting how quickly a couple days of worry snowballed into exactly the same terrible anxiety about tinnitus I had when I was 18 in 04. It's like my brain never forgot that ability to have bone crushing worry over this stupid sound

This is a great description of T anxiety. It's just how I feel. Well, mine is controlled by an anxiolytic drug because I couldn't function otherwise.

So you weren't bothered for ages and then boom, bothered again? Did anything trigger that?

It would be cool if you could get on the Microtransponder. Though I understand its quite a big deal to have something implanted and you'd have to give a lot of thought to it.

About the ANM though, that trial is 'cross-over' meaning that if you do get the placebo then after 3 months on that they cross you over and give you the real treatment. So, you cant lose, you're gonna get the real thing sooner or later. 4.5k's worth of treatment - I feel sick!!

 

[Hudson]

I wasn't bothered for a long time about it. I remember even laughing during hard times when my dad died, or girls would leave me or something else was messed up, I would think about my tinnitus and say "you're the only one that doesn't bail out on me, buddy" and laugh about it. I guess all it took to set the tinnitus worry off again was an insult to my ears from some loud music in a bar or my worry that maybe that loud music made it louder. I'm not sure... either way that old anxiety is back. I can't wait for it to go away again. It will in time, I'm sure. I'm on some anxiety meds now too... just because I know that's what it is: anxiety. I want to get a jump on it this time, and not drink a river of beer in an attempt at self medication for anxiety. I suppose it's like anything else, your brain remembers things. My brain never forgot the amount of attention it paid to the T back then, or the worry. All it took was my thinking to slide back into that, coupled with a stressful even like a move, and bam. It was back. Although it hadn't really happened in nearly 10 years.

Don't take me as an example though, really. I'm a person prone to anxiety issues and I've had crazy anxiety over other things (actually between when I got my T first and now!) and used to think "I wish I could go back to worrying about my tinnitus, because this is a real worry this time". Looking at things now, that's a foolish mindset. Whatever is of great concern to you in the here and now is what is really important, because that's all there really is: the here and now. So in the future I won't compare issues of anxiety or which one is more deserving of crazy heart pounding worry (none of them really are, if you think about it).

The real difference between me (and I think a lot of us on these boards) and the millions of tinnitus sufferers out there that are unconcerned by their tinnitus is that anxiety is afflicting us and not them. They could care less about it. We care and want to control something that we have no control over. It's the getting to the "not caring" that's easier said than done though.

 

[Louise]

Absolutely.

Jastreboff himself say's the difference is anxiety and that anxiety makes it worse etc.

I too have always been prone to anxiety, well, since my late twenties probably.

What anxiolytics are you taking if you dont mind me asking?

 

[mick]

Louise,

Sorry to hear about you not getting into the trial. Where ever the line is drawn on anxiety I can't believe that in reality a 2% deviation from that line is really significant. On the other hand, I can understand that in a trial they need to have their controls. Did you ask if you could be reconsidered in light of your strong desire to be in the trial? It would seem me that your desire to be in the trial would negate the effects of anxiety on you. In other words, it seems to me that your anxiety level would be less if you had been accepted so doesn't that count for something in the overall assessment of anxiety?

I have to admit I don't understand why anxiety should even enter the equation for testing a drug unless they are concerned that anxiety over taking the drug might harm you or bias the results. If you feel confident in taking the drug, then it would seem to me that the lessoned anxiety offered by being in the trial would be good for you and good for the trial. On the other side of the coin, it seems like excluding people with anxiety biases the results. I can guarantee that if the drug is approved it will be applied to people who suffer anxiety with their T and if it doesn't work for those people, then the performance of the drug once approved will deviate significantly from its performance in the trial.

Anyway, I'm sorry to hear you're bummed out about it, and hope you get past the disappointment soon.

mick

 

[Louise]

Hey, thanks Mick. I really feel this has set me back. I was decided that it was going to be habituation for me and maybe TRT. Then this came along. I feel like I've failed.

You're right that this device would in the end have to work for people with anxiety so why not include them in the tests. And it would seem to bias the results too wouldnt it? But, he said that its unethical to let someone on the trial with bad anxiety because if the device then didnt work for them they would be in a bad state over it, worse than before the trial. I dont subscribe to that view and I told him that its more unethical to NOT let me try it.Isnt it unethical to reject someone for this who really wants to try and then they just have to walk out onto the street in tears?

Having said this though, their trials are about the device results and not about candidates desire to try it. I understand that, but we are not lab rats with no feelings!!

He also said they exclude people for not being anxious enough (and incredibly there are more rejections for that reason than for people being too anxious!!). They want a cross-section of anxiety in their sample but not any at the extreme ends.

I have emailed the Head of the Trials to see if I can be reconsidered due to me being told to err on the high side with my answers to the anxiety questions. I dont think itll make any difference though.

Thanks for your support

 

[Hudson]

Louise,

In the past, I've been on citalopram, for some of my other anxiety issues. Right now the doc gave me buspirone... it helps to keep my hands from shaking with worry if anything else. You have to take it at least twice a day, I've upped it to half a 30mg pill 3 times a day. It's also supposed to take up to 6 weeks to have a benefit, which I'm only at about 4 weeks of being on the thing.

My sister takes clonazepam and she lives at my place. A few times she's has divided a 2 mg pill into quarters and I've taken a quarter of one of those. It doesn't tire me out or anything, but it definitely has taken the edge off of the panic attack. I really don't want to take those things at all, because they are so notorious for becoming dependent on them. Benzodiazepine dependence and withdrawals are the last thing I want on my plate right now.

Mick,

I would assume that they want to control for anxiety issues as much as possible in a trial like this. Considering the subjective nature of tinnitus, any bothersome anxiety could very possibly throw off a measurable, statistically relevant decline in T loudness or improvement in the THQ. That in mind, I agree with Mick that your anxiety issues might decrease substantially in the presence of a clinical trial where you feel like you're at least being proactive about your tinnitus instead of stagnating. But of course, none of these clinical trials have any intention of treating an individual patient. They are conducting them for one reason alone: to see if there's a benefit to a decent amount of people, and to see if they can make money. If you are perceived to endanger their ability to show effectiveness in any way, they're going to DQ you from being allowed in the study.

 

[Louise]

I've never come across Buspirone in my research. Just read about it - it sounds like a really good one. It compares well to the Benzos and without the withdrawl etc. Also its antidepressant. Have you used it before?
I was going to give you a tip about mine (well, I still am going to ) but it sounds like you have it covered with Buspirone. I found an anticonvulsant that is used for anxiety and is as effective as a Benzo, especially on the somatic features of anxiety (I think that means the shaking and physical feelings of panic). Its called Pregabalin (Lyrica). Its very, very good. Its also instant, doesnt have to build up in the blood. It saved my life. I couldnt cope with the panic, I had it all the time, just all the time.

I took Clonaz and its certainly good but stops working at the same dose after about 3 weeks. Does your sis just take it ad-hoc? (If you dont mind me asking).

You're spot on about the trials not being about treating us as individual patients. We are just numbers. Its how it has to be.
The other interesting thing about the anxiety thing reducing by actually being accepted onto the trial, is that this actually skews their results and they dont like it. I emailed about some other test results (Neramexane it could have been) and was told that because of this phenomenen it has ruined their results and the trial was cancelled!!

 

[erik]

I don't think Lyrica is approved in the USA to treat GAD like it is in Europe but I may be wrong

 

[Louise]

I think you're right actually. I think I read that about it. But couldnt a psychiatrist prescribe it 'off-label' still? Some of them are willing.

 

[Hudson]

I'm having some terrible Tinnitus related anxiety tonight! I found my way to this thread and I am listening to November Rain now.

After all, nothing lasts forever... even cold November rains.

 

[Hudson]

Interestingly enough, my little sister's boyfriend talked to me tonight because he's been having tinnitus. He works in the construction industry. It seems that more and more people have this all the time!

 

[Louise]

Ha, I love that you enjoyed that tune. Its just so...... dramatic and emotional.

When you start talking to people you find lots of folks have it. Yesterday I was talking to an older guy, ex-forces, who has it. He says he's trained his brain to ignore it. And he said that the main difference between me and him is that he is not anxious AT ALL about his! Well, he has had it a long time. Also his is a constant 'eeee' rather than this rubbishy full ear static, radio tuning in, dentists drill with a full head buzz that I have.

I wish you could get Pregabalin Hudson, it really does help.

 

[carlover]

Hudson that post above ,take no notice of that guy saying hes trained his brain to Ignore it. It all depends how loud it is ,do NOT feel a failure if YOU cannot train YOUR brain OK.

I habituated for 22 years after the first months of going mad ,the noise I have for the last 3 years is so much higher it is impossible to ignore.

VOLUME is the problem

 

[Louise]

I would tend to agree Pete. Its just common sense isn't it that volume makes the difference. When I first started taking Clonazepam it reduced the volume by at least half and I could've coped with that. Now its back up and getting louder and I cant ignore it like I could when it was quieter.

 

[calin]

Hudson that post above ,take no notice of that guy saying hes trained his brain to Ignore it. It all depends how loud it is ,do NOT feel a failure if YOU cannot train YOUR brain OK.

I habituated for 22 years after the first months of going mad ,the noise I have for the last 3 years is so much higher it is impossible to ignore.

VOLUME is the problem

You are absolutely right! Volume makes a difference on whether you can ignore or habituate or not.

 

[Karen]

I totally agree!! When my tinnitus volume was much lower, I had habituated to the tinnitus just fine, and hardly ever noticed it. But back in 2010, my volume increased ten-fold. It's better now than it was then, but still hard to ignore at certain times of the day. Volume is definitely the key.

 

[Louise]

Jastreboff would be fuming if he read this Of course volume makes a big difference, you don't have to be a scientist to work that out.

 

[Aisling]

Was this for the drug AM101? Which trial was this for?

 

[Louise]

It was for the ANM device - as per the title of the thread.

 

[Ellen]

Hudson that post above ,take no notice of that guy saying hes trained his brain to Ignore it. It all depends how loud it is ,do NOT feel a failure if YOU cannot train YOUR brain OK.

I habituated for 22 years after the first months of going mad ,the noise I have for the last 3 years is so much higher it is impossible to ignore.

VOLUME is the problem

Pete, despite the increased volume, making it tough to habituate, do you still find yourself able to not hear it a large percentage of the time due to distraction etc.? Did you find out the cause for the suddenly increased volume?