How Many Horror Stories Is It Going to Take???

http://www.itv.com/news/wales/2015-07-29/family-calls-for-tinnitus-research-after-fathers-death/

 

Hi Dubbyaman,
Thank you for the link,it's just so tragic to see just what length tinnitus drives people too.
My thoughts and prayers are with his family at this devastating time.....lots of love glynis

 

This annoys me quite bit. "In some cases however, as in James', the 'invisible condition', as it's sometimes known, has an often underestimated impact, causing depression, anxiety and sleep problems."

Johns broken leg had the underestimated impact of causing him pain, sleepless night and not wanting to take a walk.

RIP ,fellow sufferer.

 

The person they interviewed said "there's not a tablet" for it, but in the case of James Ivor Jones, why were his physicians so clueless that they didn't even suggest Trobalt? Mr. Jones must have been at the depths of despair and then only to be told, "Live with it."

 

My thoughts and prayers are with the family. Tinnitus really s an incedious thing, more research into more treatments/a cure is defiantly needed to keep this kind of thing from happening.

 

Yup...makes me so angry. I'm not coming from a biased standpoint saying that t should be the number 1 thing scientists focus on. It should simply be on the same scale as every other health condition but oooooh its not life threatening. Let me tell ya something, a condition that will drive you to think about (even carry out in some cases) putting a bullet in your head, THAT IS LIFE THREATENING!!!!!

and by the way RaZaH. It looks like 2014 was a piece of crap of a year for us both eh?

 

Yes, seriously ...man , what can we do to change attitudes toward this horrible affliction?
It is indeed life threatening,if not then it can sure kill your quality of life.

And why on earth did no one suggest Trobalt to this poor guy ?
ENT's are useless..seriously , what do they even do ? Treat infections ?
I am not clued into all ailments of the ear but it seems they do nothing for what seems a very common and serious affliction ?

 

RaZaH Yeah my ENT was a waste of time. He didn't even care about the noise. I think a movie should be made based off one of these stories about sufferers taking their own lives and put it in theaters. Show it from the pov of the sufferer. When theyre outside on a quiet porch. BZZZZZZZZZZZZZZZZZZZ. Trying to enjoy a movie or video game BZZZZZZZZZZZZZZZZ Trying to sleep BZZZZZZZZZZZZ

 

At my first stages of T, i went to the called "best ENT in city" in his radio commercials.

When i talked him about T, he just scratched his head.

 

Anyone who doesn't have the condition doesn't understand it. When I try to explain it to people they're like "oh, that sucks." Well, "sucks" doesn't really begin to cover it. I don't resent them for it. ENTs on the other hand should stop with their antiquated view on the condition and instead try and find progressive, cutting-edge approaches to diagnose and treat T. Unfortunately many ENTs just say "well, you have hearing loss. This tinnitus is common in people with hearing loss. We can't do anything about your common condition. Try to relax and not think about it."

Great advice from someone who has no idea what's going on inside our heads.

 

How many people have been offing themselves due to T and H? how many more will it take?...well..I assume..alot.

 

I've been tempted to put my "screeching" on my iphone and when I'm with people just turn it on and let it play on and on. I know if I play the noise for hubby he screams to turn it off. If only it was that easy huh? And that's externally, it's much worse internally as we all know.

 

Unfortunately most doctors are clueless about tinnitus not to mention Trobalt To make things worse it's hard to get or not even available in a particular country (here in Australia for example).

Second problem is that Trobalt is not prescribed for tinnitus so getting it off label becomes a real challenge.

We need to (somehow) push for this drug to be available for people to try before they get to the stage like this poor man did.

Tragedy!

 

I'm sure doctors know what's going on and they relize the amount of people that go into they're room complaining about tinnitus , but doctors even study physiology and they try to create an environment which will make it seems that tinnitus is not life threatening and won't kill and it's not a problem that's why so many of them seem careless but f--k them for doing that and if they have tinnitus they will know the pain and problem

 

Yes and how many people have clicked and shared on the TT page - so that Team Trobalt can try to do something? So many people post the same thing and yet hardly anyone has clicked and shared on the TT fb post! If the post can be put on the front page of TT perhaps so that people see it all the time whenever they log in or guests too.....maybe that will help get it shared and clicked? Has everyone who posted or read this thread clicked and shared?



60 likes and 12 shares????!!!!!!!!!!!!!! It is just truly pathetic! Front page maybe might be better if it got posted on the front entry page to TT? Otherwise just give up! At this rate it is going to take the next 10 years to get 1000 shares and likes let alone 3000 reads of the professors literature.

 

I asked my doctor for trobalt yesterday. Not only has he not heard of it , we discovered it is not available in my country.

 

Which country is that please?

 

Singapore

 

There is literally no clinical evidence whatsoever that Trobalt is a safe or effective treatment for tinnitus. There are a handful of anecdotes from the internet based on a single clinical study in rats (which was not even trying to address the impact of the drug on chronic tinnitus).

If doctors were in general more willing to throw extremely dangerous drugs at people based on random posts from internet forums, I think the world would be more scary, not less scary.

It's an extremely low-market-penetration drug, because it's extremely dangerous, and hasn't proven to be very effective for the exact conditions it's approved to treat (treatment resistant partial-onset seizures). My experience was that it was pretty easy to get in the US, but that's because doctors here are, in general, drug happy.

Personally, I very quickly found the side effects worse than the tinnitus. I believe people should be able to try this stuff if they want to, because I'm essentially a libertarian when it comes to drug policy, but we absolutely need to stop the "trobalt cures tinnitus!" meme that seems to keep popping up here, because it's not true.

 

I agree..I think it's scary how often people go on about this drug..Yes it certainly has evidence to support it helps with T but at the cost of losing your kidney function? or other major health compromises? It isn't the right drug for T, period.

 

@amandine lets be realistic, who is going to read "Pharmocodynamics whatchamacallit" ?
Keeping things factual and scientific is fine , but why would I share something that not even I am going to read?
A successful push for awareness is something everyone will share without being shamed into it.

 

I read all of the pharmacologic / pharmacokinetic documentation I could find prior to ingesting it, and I don't think that's an especially unusual thing to have done. I don't have any formal background in organic chemistry, nor is such required to gain useful information from clinical drug research.

I take a rather dim view of ingesting experimental drugs without taking such steps; I think it's due diligence. It's a lot less important if you're taking an established drug with a good safety profile for an obvious ailment. For instance, I don't think you need to do too much homework to safely take a course of mainstream antibiotics for a demonstrated bacterial infection.

Trobalt is a lot different. It's far more dangerous than probably 90% of the drugs on the market. Even if people have no interest in learning about potassium channel subtypes, they probably should -- especially when there's at least one recent documented case where a trobalt user ended up with a permanent need for a catheter as a result of Kv channel mediated muscle dysfunction/atrophy...

 

Yes, but for sharing on Fb to raise awareness ... not it.

 

My God! That is something I did not know!

RaZaH hi! Look without spelling it out - surely a read constitutes opening and closing the document (and being exposed to the contents so can read it). ATEOS says he needs 3000 reads of the document.....how they count that I have no idea at all....but if one opens it and closes it then surely that counts as a read....who knows what you read of it - maybe just the title before the little hoods folded over the eyes but it is still a read no? But he needs 3000 people to have opened it and closed it (and hopefully to have read it too). Personally I am exhausted mentally from all the stuff I am sent which is scientific and I dont understand most of it unless I read it several times and make notes too..so I know exactly what you mean......but this is to get Team Trobalt in action again and this click and share 1000 times and read of the scientific document 3000 times is what is required.....so if we dont read / open it or click and share then Team Trobalt will cease to be active at least as far as ATEOS is concerned and he has done a lot to help with this - all he is asking is a show of interest and intent to support team trobalt an the work that is being done for our benefit....in my view not a lot to ask....to prove intent of support for this.

Say that to Danny Boy or Locoyeti or Preslys or others who have either got rid of T or reduced it substantially.
Why Autifony has not worked have no idea but Trobalt is doing something which is why Team Trobalt became active.
Dangerous yes but Team Trobalt is trying to get scientists to look into it.............which requires a click and share on the TT FBook page on June 8th article plus a read of the professors literature. Have you done this yet? Anyone reading this done that yet? Or shall we just continue to moan about it all and this time next year we shall be saying exactly the same things with a few more deaths behind us due to no hope and despair.....with no improvement and no changes.....''too much time spent sitting means there is nothing left to say'' - a line from a song which sums it all up for me......sorry to go on but PLEASE go and click and share June 8th TT article on FBOOK....

 

Fb..especially. .Keep it quick, with a major impact (sympathetic vote) hit their emotional heart strings..thats it. I wouldn't read it and I wont share it. I will tell you one thing, even the worst of diseases, the ones that kill you quick, the average person doesn't give a shit unless it happens to them..C'est la vie.

Fb is for my friends. .some other support groups..Me sharing it won't convince any of my non scientific/ researchers with grants to study tinnitus and potassium channels to read it..I don't know. maybe someone has better connections.

Just a quick recap..we can't know if Tro cured Danny Boy. I've read most of his posts. .I don't know the others..what I know is how dangerous it is.

 

@amandine the document has been 'read' 1735 times

 

If 1000 people on here like or share the FB page then team trobalt will continue with ATEOS. You are using TT - dont share it with all of your friends - share it with your close friends only......this is to help this group of which you are a member......please!

Wow! How did you know that - please tell me? So 1065 reads to go! Thank you for telling me that.

 

@amandine you can see the count on the left at the bottom. Now i have noticed one can 'read' it more than once....

 

My close friends or family don't give a shit about my health issues..If ai thought it could help, I would share it. I only come here for a bit of support, and some knowledge.

 

It's a personal choice. It's not on the black box list and since I already take a few on that list I'd be willing to try Trobalt to see if it helps. I'll try and get a prescription and report back if it helps.