Plucky's Life

Yes, it has an appetite increaser in it. Thats good for if you're that down you cant eat but not otherwise. But, if you know about it you just control your appetite. Its well worth it for the sleep. I would never have slept without it. I asked for it because of what you'd said about it Karl so thanks for the tip. This is where these forums score high isnt it? Good tips from people who've been there.

 

Oh, is that the Two Buck Chuck?

 

alcohol has no effect on the T for you then, Thats good

 

Yes, this is "Two Buck Chuck", because it was originally $2 at Trader Joe's. In England, I suppose you would call it "One Pound Charles" - more or less (I don't know the current currency conversion).

In Germany, it could be called "Der Zwei Euro KarlWein", but I'm not quite sure about that (I'm learning German).

This forum has given me a lot of good advice, and I've used it to work out my thoughts. Good advice on tinnitus is hard to find. Tinnitus is sort of the wild frontier of medicine, unfortunately.

I agree with Markku, that we each respond to things differently.

 

Well, Markku, at one point I was worried about or suspicious of everything and was eating such a bland diet that I hardly ate at all. I have been slowly coming back to other foods, old favorites, without any trouble so far. All of my walking was in effort to escape T and in the dead of winter I was walking up to eight miles sometimes, not eating, not sleeping It's no wonder I lost weight and I was already slim to begin with

 

If you can walk 8 miles a day, how many hours is that? (casual or brisk walking?)

 

Alcohol makes mine temporarily worse. I've read that it causes a temporary threshold shift in the hearing (ie. our hearing gets worse) just like with Disco Tinnitus. Apparently that's why groups of people who are out drinking get louder and louder as the night progresses, its because they cant actually hear each other as well as at the beginning due to the temporary threshold shift!

 

You would be about right there - with the 'One Pound Charles' though it doesnt have quite the same ring to it

In our supermarkets a few years ago I saw for sale red wine in a plastic bottle. A plastic litre bottle. And, of course it was dirt cheap. How classy is that? When you told me about Two Buck Chuck it made me think of that

 

I broke it up during the day two three hrs of walking, real steady pace not slow. It felt like I was escaping the T so i kept doing it, along sidewalks with street traffic so it was good masking and it kept me alive and half sane somehow. It's been a cold and horrible winter with this. How are you doing today?

 

Yes. I have heard of that and experienced it too.I've been sleeping through last two nights with six to seven hrs. each night and I feel rested- finally after two months. I'm taking a tbsp of Nyquil in water and half a clonaz, and it does the trick. We'll see for how long. I figured I would reserve the option of taking the other half of clonaz today if I needed it and really thought I would because it was loud when I woke up but I got busy, resisted the temptation to take anything and here I am 4 PM and made it through the day. This was another really busy day with a variety of tasks both inside and out of doors so there was little time to dwell on the T. I am trying to train myself to ignore it, during the day anyway, what do you think and how are you doing?

 

Karen, I read somewhere, here, posted by you, that you found magnesium supplements helpful . Is that right? What are the amounts and what effect does it have?

 

I'm considering everything. It was recommended to me, I bought it and took one expecting the T to go away, frantic state I was in. Now the bottle sits here; "calcium magnesium citrate" and it also says "serving size five tablets" and they are big tablets, Karen.

 

Thats the way to go Frank, ignoring it. Good on yer.

 

Hello Plucky!

On Louise's request I'd like to tell you in short about AM-101 and my experience with it.

AM-101 is an experimental drug based on esketamine that is now in II phase of medical trials. It comes in a gel form and is being injected in the ear. It is supposed to treat noise-related tinnitus not longer than three months since onset. I have underwent this treatment in october 2012 and finished it early this year. There was a 33% chance of getting the placebo but I am almost sure I in fact got the real drug. The treatment consists of three injections but I quit after a second dose because of a very intense reaction to the drug. On the day of injection my tinnitus went up like threefold and I panicked. It resolved itself after few days but it scared me to the point I decided to quit the treatment early.

Looking back I don't think it was a good decision to quit because in the end, my tinnitus has greatly improved. It is not completely gone but I can go for hours and days without even noticing it. Even today I took a walk in the park, it was really quiet there with just some leaves rustling and birds chirping. I intentionally tried to listen to my tinnitus and I were unable to hear it

That is to let you know that there is hope, there are experimental drugs being researched that actually work and they might be a "gate" to the whole new line of tinnitus treatments in the future.

Do not worry about the 3 months limit. So far it is arbitrary and while the drug did indeed work better the earlier it was used, I think EVERYONE might benefit from it to some degree regardless of how old their tinnitus is.

Just to clarify - I am not related to the company manufacturing this drug in any way.

 

Thanks Fish

I wish I had know about it when mine started after the night out.

Are they still taking people on the trial do you know?

 

As far as I know the study is over now and depending on the outcome they will start phase III or not. Results will be available this summer:

​

Auris Medical announced today that enrolment has been completed for its TACTT1* study, a phase II clinical trial with AM-101 for the treatment of acute peripheral tinnitus. A total of 85 patients were enrolled in the study to receive either AM-101 at 0.81 mg/mL or placebo. In Stage 1 of the trial, a single dose intratympanic injection was administered, while in Stage 2 each study subject received a total of 3 intratympanic injections over 2 weeks. ​

​

The study recruited patients suffering from tinnitus following acute noise trauma, inner ear barotrauma, middle ear surgery or otitis media up to 3 months after onset. Results from the TACTT1 study, which is being conducted in the USA, Belgium, Germany and Poland, are expected to become available in summer 2013.​

 

TACTT1 patient here! thanks for the update!

 

Fish, I had 3 injections thru my eardrum At Paparella in MN in 2010 and 3 at Shea Clinic in Memphis,TN in 2011.

They used Dexamethasone at Paparella on 3 consecutive days in my left eardrum only. (I only had ringing in my left ear) I can't honestly say it helped me but I did have some off balance feelings that could have affected my vestibular in my left ear.

Thinking Shea had refined this procedure and pioneered it from what I read, I decided to go to Shea. At Shea, I also had 3 injections in consecutive days of Xylocaine/ Dexamethasone and in addition had a IV with Xylocaine/Dexamethasone. It was a much longer procedure at Shea than Paparella, primarily from the IV and recovery.

Can you be sure Fish that you positively had the AM-101 injections? Can you get final proof that no one is led astray? Also, how did Dykey from Florida ever come out of his injections? There was no follow up posts to my recollection. I don't mean to put you on the spot here, but was just curious.

I cannot give a real definite answer yes or no if the injections at Paparella or Shea helped, but at least there was no placebo involved.

And please no "eggheaded" responses to posts that think they have to talk like a doctor to get their point across. Didn't mean to say that lol.

 

Dale, you really are Columbo

 

Were you also part of the trial?

 

Not even close.

 

bro-fist! How are you doing? Did it work out for you?

Dale - I will have a definite proof when the study results are published, then I am allowed to make a call and ask whether it was placebo or a real drug.

I think it was real because of my reaction to it and my doctor mentioned that it likely was real. He discussed this with other investigators and apparently I wasn't the only one who had something like this happen.

As soon as I have the definite proof I will let you all know, I promise!

 

"Bro-fist" - must start using that one myself!

 

Dale - Bro-fist buddy!!

 

sup brah - bro fist to Fish with secret hand shake Yeah Louise I was in the trial as well last year. Had a one time injection but didn't really have any change in my T. Hopefully find out what trial group I was in this summer.

BTW needles through the ear drum are not fun, I did get dizzy for a bit and couldn't hear at all for about 2 hours.

 

I cant imagine the treatment is no fun at all. Do you think you got the placebo then? Why did you only have one injection when its supposed to be 3 isnt it?

I've always wondered if these intertympanic injections make you have a perforated eardrum. Guess the needles are too fine for that.

Bro-fist!

 

Louise, It really hurt at Paparella, but at Shea they used a laser and wasn't bad at all. Do I get any likes on egghead comment? Was not directed at Fish at all, just some lashing out.