The Noise That Kills

Yes Telis. I agree.
For today, I could only take a Tavor, because the T was no longer bearable.
Absolutely shrill and superloud. Horror.
Are we the ones who will get stuck here forever?

 

Honestly, I try not to think about even tomorrow. One day at a time or even one hour at a time for me. To think about the next 40 years like this is just too intimidating a thought. Try and stay in the moment is the best I can do right now.

 

After days of being so high ,today woke up to low in both ears ,but it's going inwards ,hate today most of all my T days .head screaming day .Dont take meds apart from daily Blood pressure ,so I know it's not that 50 ml tablet doing it ,just can't get handle on it .Yes there's T ,then there's T .So how does one ever get use to it to ignore.?
I've yet to find the reason for how it behaves as it does. Roll on bedtime .

 

@Danny Boy. I don't know if this is of any interest to you but Autifony are starting clinical trials.
Autifony Trials

 

This forum is a blessing. You guys are SO supportive and f*** those that say these boards do nothing but create suicidal ideation for those on it. You are all champions. I get such a warm feeling from reading all your supportive posts to DannyBoy. I think most of us who develop severe, intrusive tinnitus over night contemplate suicide in the first few months. Life can never get back to normal, right? Well perhaps there is a new normal, but we CAN go on to enjoy our lives again. It takes time. Tinnitus is a severe intrusion in life, but most people habituate eventually. @Danny Boy , regardless of how you are feeling now, you will get better. You are four months in. Give it another six to eight months and you will see. The sun will shine for you again. And by the way, your girlfriend sounds less than supportive. You don't need that extra hassle. My suggestion. Give her headphones on and play an annoying sound over and over and over. Ask her to wear it day and night for just a week. Perhaps it will change her perspective of what you are going through. Stay strong, buddy

 

Absolutely spot on my man! I also wanted to say a few things about your girlfriend Danny, but I feel I'd be breaking a few rules here on TT

 

@dboy

Actually it was months ago.......and the support that helped me the most was what I got from a kind lady in the UK who got in touch and spent time speaking with me on skype. That is what helped me through.
People mean well when they send messages of support - of course they do - but sometimes you really need to speak to someone and not just type......actual speaking human contact made the difference for me....


@Nick the Swede

To both of you - you dont know what you are talking about. Please read carefully before you jump on someone because you think that person has said something you dont like.
I did not say that danny boy getting relief now was not good news or depressing. I said that him having to jump from 200mg to 500mg dose (ie being on the highest dose) is the not good news bit, He is now already on the maximum dose and this is not good news. He started on 100mg and it worked great for him and that was fantastic news. When he was on 200mg it didnt work for him, suddenly. He was suicidal, again. Not good news. He has had to jump suddenly from a 200mg dose to a 500mg dose in order to achieve what he was achieving on the original 100mg dose. That is not good news! This drug seems to have no consistent effect and that is the bit that is depressing. And he may run out of trobalt as he is taking a much higher dose than he had originally planned from the supply he received which is not good news....the fact that he may need to be on this drug for life is definitely not good news and may not even be possible or may stop working due to tolerance increase,,,and the end result may not be permanant which is definitely not good news and is depressing.
He is not the only trialee who is suffering again from T whlst on trobalt and having to raise the dosage as it not working suddenly. This is not good news and is depressing. This is what my post is based upon.
This aspect of the drug is what I was referring to when I said it is not good news and depressing. Danny Boy feeling great is great news....but whether it is sustainable for him is now highly questionable especially when you look at other peoples experiences too - and that is depressing.
One cure so far - mpt - that is it!

I am in constant contact personally and privately with danny boy. We spend hours chatting and talking. I understand exactly how he feels and if I was an ''energy sucker'' he would not spend that time with me.
In fact while I am writing this we are speaking with each other.....call just finished (he called me) = 1 hour and 23 minutes and this does not include the hour or so we spent earlier today, chatting.
This is what I call support! and friendship.

I spoke the truth in my post and not some airy fairy assumption........danny boy is completely aware of my post and in fact I read it to him.
He wasnt high as a kite though - I thought he was but he corrected me. He was just trying to be jovial in the face of adversity. He has no side effects (yet) thank goodness. His earlier post of song lyrics was just a funny which I found amusing too and I told him so.
He has quite a dry sense of humour!

I am also in touch privately with other people who are suffering greatly and we chat and help to support each other sometimes just by helping to take each others mind of this awful T. So there again I would not be considered an ''energy taker''.

Personally I just prefer to call a spade a spade rather than a heart....in other words I suffer from honesty as well as T.....and funnily enough all of these people I am in touch with have found me to be an energy giver....they appreciate my honesty and ask for my opinion on stuff. So what do I know....I always say nothing, I know nothing....but if I do know something then I say it.

And I can assure you that the tro is making danny boy feel much better now and I sincerely hope it continues. But he is as aware as I am that it may help him permanantly (great news) OR indeed it may not or it may be temporary (that is the not good news and depressing side of it)....So far it is working again for him but he is on the highest daily dose and I pray to all the gods there are that he finds permanent and sustainable relief...in the meantime we chat and exchange ideas and hope to find a brighter future.
Danny Boy really is a lovely lad and only deserves the best that life can offer him.....but I can say that with knowledge and honesty as I have taken the time to get to know him personally......as he has with me....

 

Marlene, please read my above post and you will get a full perspective and hopefully a true understanding on my post....thank you...
danny boy and I are in touch with other quite often. Not only would danny boy see my post but I in fact read it to him......he wasnt bothered in the least....he understood it.....
by the way, he has changed his photo....looking good danny boy!!

 

@amandine, The leak thing was not just in this thread, more like your total efforts on this site.

 

@Nick the Swede
What are you talking about? and what leak?
Makes no sense.

 

@amandine, I am sorry if you did not find the huge amount of patient support, suggestions and indulgence you received from people here helpful when you were struggling. That is surprising.

Regarding your post above, it was on the public forum without any of the context of a private discussion. I do not wish to cause offence to you, but your post was very jarring in the context of this thread and if left unchallenged may have created the impression in anybody reading it that TT is not a supportive place. Which it is - something very special and worth exercising care to preserve.

 

@amandine, if you dont know what i mean read through your 444 posts in this forum and then get back to me again.

 

@dboy
yet again you are making assumptions.
I did not say that, not once did I say that!
What i said was that the most helpful support to me personally was the speaking and interaction with someone as opposed to typing......quite normal really. People like to speak with people more than type. In fact I just had a chat with the lady just now....we became friends which is the nicest part of TT....
I did not say that the posts people sent were not helpful or did not provide support or were unappreciated. I did not say that once. You are putting your preferred interpretations on it.

As to people reading my post and assuming it is not a supportive place....well ok i can give you that one...didn t think of that and I wouldnt want anyone to come on and read my post and make a negative impression of the entire forum.. i guess a person may come on and read it and be upset thinking that the forum is not supportive....I can understand this point of yours. I was expressing my opinion is all. And am actually in communication with the person involved so have a good understanding of what is happening too.

People should be allowed to express their opinion on here...i think....yes i can understand your point....so will take that on board and wont risk upsetting the potential person coming on here and thinking it is unsupportive forum...

So now I suggest leave it please....there is no need for an argument. If you wish to discuss this further then pls do so in private messaging. I dont think that the public forum is the place - but if you wish to discuss then i am more than happy to explain my side of things privately and we can exchange ideas and opinions privately. Ok with you?

@Nick the Swede

Same goes....not getting into any kind of argument with you....life is short.....we are all in the same space here....we dont need arguments....i expressed an opinion and that is all and because you dont agree with it you want to start an argument. No thanks! I repeat as above...if you wish to continue this and discuss with me then please do so in private messaging...I shall be more than happy to offer you my opinion and you can tell me yours. After all - it was a discussion about trobalt was it not? By the way, while you were typing to me, danny boy and I were having a real nice chat with each other on skype. He was not offended at all!!We do not need to take up any more of the public forum with this as it benefits no one.
Please private message if you would like to discuss further...

 

dannyboy is not even at 50% of the maximum daily dose so if he's experiencing relief(volume wise) at half of what's recommended , that's a very good news to me.

 

@Valentin

he is on 1200mg per day
500 plus 500 plus 200

 

@Nick the Swede and @dboy, please take it easy on Amandine.
I personally know she is supportive of Dannyboy on Skype (ofc you couldn't have known that), she is just as worried about him as we all are. The wording she used sounded negative because she is worried for the future. Of course it is good news that Trobalt is working again, but it is worrysome that he now maxed out his dosage to 1200mg per day in such short time, and that's what she meant to say.
Probably it was misguided in terms of time and place, but it is the sad reality. A better place would probably be in the Retigabine thread etc.
Lets not go on to throw tomatoes at each other (too quickly ;-) lol and give each other the benefit of the doubt). Thanks.

 

Fair enough @dan. I did explicitly say that I did not mean to cause offence, and ended my last post with a . We are all in the same boat with T and life is hard enough without needing to fight each other.

 

I agree, this is very depressing...Danny boy has to get high and take a known dangerous substance just so he doesn't off himself. Yay...great news!! Let's celebrate!!!

Maybe I will load up on smack and take a nice big hit, I'm sure this would help me forget about my T for a while. But, oh right, a white coat gave it to him so it's allll positive and the people that show concern are just negative. I see how this works. Let's keep it positive, keep getting high! Don't worry about the consequences, after all that would be negative and who wants that!!!

 

@Telis

I totally agree with you. I am not negative but god knows i cannot cope any more either. I know exactly how you feel and I am the same. My situation is intolerable. it was intolerable before but with this is it just too much. I am have no security even where I live and i live with someone who is not supportive and tells me he cant cope. He tells me to buck up and sort myself out and pretty damned quickly. I am having to take half a xanax every day now just to be able to function. The noise is getting louder and louder and I wonder if this is the stress doing it to me. I dont know what caused it but everyone keeps saying stress. How can stress cause this? I never in my life thought i would get this and now i am with this and dont know how to make it from one hour to the next but yet i still try to help other people. Like you telis I cannot go on...............no one understands of offers any help whatsoever. Written words on this site are not doing anything to help me.......i am still left here alone stuck in france in a terrible situation with no help......just words........I am not a negative person and I dont think you are either Telis. We are just absolutely afflicted with this and neither of us know a way out.....that is the problem....there is not way out or any way to cope.............TRT well I would do it if I could find it but they dont have anything here. And the medication that is prescribed is the very stuff that has the potential to either cause it or make it worse!
And when the trobalt stops working for danny boy, what then? what will happen to him? for now he is ok...but that is for now........so yes you are absolutely right Telis...........you have posted the truth.......i now take a pill every day just to get up. I cant get sleeping pills cos the stupid doctor prescribes ones that are killers in the end. I cant get anti depressant cos of the same reason. She the doctor prescribes the ones that can cause deafness so cant take them either. And when i go there begging for help she gets angry cos i am a difficult patient who she cannot help so she gets angry.......what am i supposed to do. I think there is no hope whatsoever even though this forum is supportive and all that how is it helping us? And where is the proof that stress causes this? Where? But trobalt is now seen as the answer? How is it the answer when danny boy starts to go blue or loses his sight or gets hand tremble or kidneys start to mess up? God we are all doomed and all the words under the sun are not going to make any difference to us whether they are positive or negative. So now everyone have a go at me for being negative. And what difference will that make either? There is no cure and there is no help and there is no future.........yes telis you are absolutely right!

 

@amandine, you have some points in what you are saying and i appologise if i was rude before. Of course it´s sad when a person needs drugs just to stay alive. But all we can hope for is that this Trobalt thing is a start for something that can bring lasting relief for us all.

 

@Nick the Swede

thank you for your post. Appreciated.
Not being rude so please dont take it this the wrong way. But in the end what good does it do? Not being rude to you at all, please understand me, but in the end it is only words and words are not solving anything. There is only so much a person can cope with as we all know.

 

I would just rather hope that the benefit is lasting as it was for Mpt.

I stand by the idea that in the context of suicidal feelings then it is not a good idea to draw attention to the negative sides of a situation.

 

@dboy

but you still have a stash of suicidal drugs! That is the most worrying thing that I have read on this forum. Dont you think that this is incredibly dangerous to post on this forum. Jeez, things are getting worse for all of us...........

 

@amandine you might be right. I will edit my post. If you feel the way you say then you could do the same.

 

I talked to a girl that was absolutely positive that she got tinnitus from severe stress.. SHe had it for 1 year before it went away.. I too believe stress can cause tinnitus.. Maybe not directly, but indirectly.. Somehow..

 

I guess I'm the opposite...by looking at a problem from all sides (even the negitive) maybe there can be a better way. The fact is that drugs can be just as dangerous as suicide and can lead to increased chances the next time. So in the context of suicidial feelings to ignoire "the negitive sides " could be very dangerous IMO. But no one likes to hear these things...so sure let's ignore the potential down sides and put the blinders on. It may be costly in the long run but I understand people don't want to hear it.

 

@Telis sure, we all have our opinions and if you had read what I deleted from my post because of amandine's objections you would understand that I am not advocating blind positivity at all.

I hope you will forgive me not commenting further as I thought this matter was closed days ago and it seems like unnecessary drama to keep it alive.

 

@dboy I agree with most of what you say here at TT, you have many insightful points but this time I guess it's just a difference of opinion.

 

I think at least the thought of suicide is very very common among T sufferers. But in my opinion you don´t need to be closer to actually do it if you have a stash of pills. Could be as bad to live close to the railroad track or on the fifth floor+. Or Close to a lake or have any kind of gun at home

 

I agree. My point was more to do with the physical and phycological risks rather than actually being able to end it specifically with a hand full of trobalt. I'm not even sure if that is possible.