In Loving Memory of David Craig Muller

Hi @Codaz , I don't recall exactly but I think he had some very mild H.
When he took Tegretol, his T disappeared after a few days, that meant he was back to 100% T and H free.
He was so happy that he wondered if he should go off tinnitus disability and go back to work. There was absolutely zero depression at that point.
This went on for at least a month and he was very ecstatic.
I don't want to mislead you, I don't remember exactly the dosage, but it was probably either 300 or 600mg per day (?) I can try to verify this from my other friend who spoke to him about his dosage.
Glad to help.

 

i just got a trophy i dont care about that i just want to find a cure for this

 

Also, if its worth anything, Dr.Jeanmonod at the Swiss neurological clinic in Solothrun, Switzerland also recommends T patients try Tegretol before doing any brain surgery.
I would say try Retigabine.

 

These tragic stories need to be sent to the public that does not suffer from tinnitus. CEO's potential investors and current research teams looking for a cure those are the ears it needs to fall upon....not the ones who are crippled from it day to day......

I came here for one reason and one reason only Hope and Support. We all are aware here of the "reality" of this grave situation. But If you want to post stories of tragic suicides due to a tinnitus sufferer of two years who had tried everything but still took his life. Im sorry I feel in the end it does nothing for hope and support especially for those of us that suffer crippling anxiety due to our tinnitus, ultimately this news could set someone seriously back a few hours, days or even months. What about a young boy of 17 who reads this and thinks "If this guy had seen everyone and could not be helped maybe there is no hope for me".....not good

I would seriously recommend that there should be a "Grieving" sub forum where readers can read all they want about tragic suicides and failed attempts to get help. But why post such a thing in a "Support" thread.

Im sure there are other members who read this old and new who have not yet habituated and it did in some way set them back......if I am I wrong please chime in . Im sorry but it makes me want to avoid this forum for a while.....

 

im so sorry for your lost ive thought about it but i will not do that because of my wife and my daughter

 

Thanks, I appreciate your honesty. The truth is always better. Nobody is holding grudges we are all in this together! You said what you felt was right for you at that time, and maybe it was...as this is a democratic forum and nobody here is an "expert" on T and H. Yeah I'm blunt, I admit that hurts me in real life too.
The things I told you before about H, was out of caring for you - believe it or not.
I wanted to try to protect you from all noise! (like you were my baby) so that your H would go away. I know this is not realistic in our world today, but I had to try.
I really hope things will improve for you and I know they will if this Autifony drug really works, as I was told by world class Swiss neurosurgeon (expert on brain disorders) that if T goes away then H will too.
That you can take to the bank.

 

Hi all,

We've got a lot of feedback in the past day.

It's the same thing again as it was earlier this year when the story about Gaby Olthuis was posted. Well, there's one significant difference; some people here personally knew Craig.

Yet a group of people strongly feels threads like this one don't belong to a support forum.

We have still not found the perfect solution that pleases everyone and maybe even can't. But we're trying to find a good compromise.

We are considering all the options among the staff (any ideas and opinions can be sent to us by clicking here).

In the meanwhile, may we ask that this thread is not turned into a debate about whether this topic belongs to the forum or not, or what kind of moderation style is best. It's something that our 5-member staff team will try to figure out, with the help of all the feedback we've gotten and hopefully receive to get.


Most of all, to our newbies (there are thousands and thousands more readers here than just the signed-in members every month), rest assured that the majority of tinnitus sufferers will eventually begin to feel better. Most reclaim their lives in time. We all feel incredibly empathetic toward what happened to Craig, but there's no point in thinking "is this going to happen to me?". Most likely, it won't.

Please read our success stories here: https://www.tinnitustalk.com/forums/success-stories.47/

If anybody thinks that they can't go on, talk to somebody:

http://en.wikipedia.org/wiki/List_of_suicide_crisis_lines

 

I have thought about the final solution and you know its not worth it!!!!!! I can deal with this junk and keep on looking for a cure or just something that might just hide the noise problem. So sorry to read about this person and it easy to see why he took his own life. But with my faith in our maker in check I turn to my inner self and thank god that my life has been good and will continue to be even if the bell of saint mary are ringing in my head.

 

Threads about suicide are always difficult for admins of boards and regardless of what they do or their policy they will always be criticised. It has been said many times in the past that suicide rates are no different among those with tinnitus or those in the general community. There are usually contributing factors but often they are never reported and so some people who have newly acquired tinnitus become even more fearful and anxious. I really feel for those readers of this thread who said they are more anxious after reading it but hope they understand that tinnitus can be beaten and life can still be wonderful.

 

My worst fear ! Because sometimes I want to remove my head off my sholders just for a short while.
Please God help find a cure soon. Rose

 

Dan I am so sorry for your loss.
Craig, my thoughts are on you tonight and I hope you are at peace.
Don't let this scare you if you're new here btw...

 

I have earlier decided not to comment anymore. But your reply is bordering on a personal attack on the intention of my post. I am only thinking of those who are struggling and the adversed effect on them by reading the tragic news in the Support Forum. I have said I will leave it to the admin of TT to decide if we will continue to have news of tinnitus suicide for the benefit of the newer T sufferers. You are implying or saying I am happy and habituated and I don't want to hear any thing about people's misery or that they are thinking about suicide. I don't know where you are coming from and getting such conclusion that I am aloft or indifferent about people's suffering and suicide ideations.

Believe me, you don't want to know how often I dealt with suicidal T sufferers who approached me via PMs here and Yuku, and how many even came close to really doing it. One person from Toronto Canad told me he already made his will and had told the wife that he would any day find a place to jump. Realizing the mortal danger with this person, I had to persuade him to reconsider and we chatted over the phone to counsel him with the little untrained skill I had on crisis counselling. I don't know about you but he is one of many I deal with in the last few years when I decided to come back to support the struggling newer sufferers. Every month I received and exchanged PMs with people who have suicidal ideation and tried my best to talk them out of it. So if you consider that I am happy, habituated and indifferent to people who are on the border line of suicide, I respect your opinion. You are entitled to your opinion.

It actually hurts me that after all that I have tried to help the struggling newbies, that I deserve such harsh comment from someone who doesn't know a thing about what I do to support struggling newbies here & in Yuku. But it is okay. I am going to stay positive and will be ready to help where I can when a suicidal newbie thinks my experience will help them. Saving any soul from the brink is well worth it if I succeed to help them.

But don't get me wrong. I am not alone doing this. I am only one of the many members here and those on Yuku who are offering help to newbies. I am no special person with special knowledge. I just happened to survive my T & H horror story and have a positive message to tell like those members who write their success stories. I don't have a lot of time besides my FT work & family. But I try to help whenever I can. I can't promise what I can do to help a person suffering as bad as Craig. But I will try what I can and I will ask the kind members at large to collectively help the struggling member.

 

And that's probably why the suicide rate is so high because of the attitude of people to sweep it under the carpet and pretend it's not happening.
This thread was started as an obituary for some members friend, I seem to recall Robin Williams thread didn't get any negativity on it the way this has because he happened to kill himself because of Tinnitus!

Out of respect for Craig and his friends on this forum and to his family, I really think peoples personal opinion should be expressed on a different or new thread!

Rich

 

I agree with Rich, @billie48 your last post has no place on this thread. If you wish to debate your point of view, you need to start your own thread.

"I realize where your heart lies, and I said I really respect your presence here at TT..but sometimes the otherside of the story needs to be told too." Street Spirit

I don't see any hint of personal attack here, on the contrary. I think you are way overreacting.

 

@billie48
I personally don't think that anyone here questions your intention to help, you are an inspiration to many of us struggling to cope.
I'm sure many can also relate to your struggle with anxiety and panic in the past and the suffering you endured when t hit.
I certainly can.
The point of this topic is not different to people suffering depression who don't find relief by taking meds.
Same with t, many recover and go back to normal living, some don't and never will, contributing factors are different for everyone.
When I was suffering anxiety in the past there were two suicides due to the same condition.
That is the reality!
We can't or shouldn't sugarcoat this awful condition. Men and women in their prime years are brought down to their knees due to some "sound".
It's wrong to call it "just a sound", it's wrong to tell people it's their reaction causing the problem, this "old school" of thinking is responsible for no cure or something that can reduce the noise, in 2014 that's unacceptable.
If Craig was my friend I would send his tragic story to every t association in the world, to every current t research, to dr.jastreboff and every bloody ENT and medical doctor who possible treated Craig and denied him medication.
Medical world must come out of their bubble and realise that this condition is not a joke, they should think twice before they dismiss a desperate person like Craig who took matter into his own hand.
Whose to blame?
If we as TT members can't have understanding for this tragic event, if we choose to swipe it under the carpet, what hope is there for ever finding a relief.
Some people here are hurting because they lost a friend, they are scared and grieving!
Do we turn our back on them as well?
Sorry I'm dragging on but we must be prepare to face the reality which may not be what we want but it is what it is.

By the way at my very first consultation with ENT he said: it will never go away and as a matter of fact some people commit suicide!
That's my luck

 

@billie48 I don't understand why you keep using words like "debate" and "personal attack"

You have an opinion, as do I and I wanted to clarify I was NOT trying to debate you. I felt that needed clarification. .

I KNOW how much you've helped others including myself I also lived through ( and still going!!!!) H Hell and now worsening T! anxiety and depression..I am only 10 mths in..

Last September I was diagnosed with "Trigeminal Neuralgia" do you know what the other name for it is? " suicide disease"

Then in December I got even luckier and got Hyperacusis and Tinnitus. Lucky me huh?! First thing I read about H, was a widely known buzzfeed story regarding suicide and
H...It sent me into a tailspin of terror..Here I was with now TWO incurable ( I thought at the time) horrible, torturous conditions! ! one of extreme pain and torture and the other well with extreme pain and lets face it, H is torture. ..

But Guess what?! I don't give up that easily and I searched for answers and help..THANKFULLY I found hundreds of loving people to guide me into this new terrifying world of TN and also H..and my TN has gone into remission for the most part for now. .but my H is still there with ups and
and downs and my T has worsened and I don't know why..

This last month I became very ill, was hospitalized, had emergency and very painful surgery on my abdomen, was with my grandmother alone as she passed away, husband and I separated, he claimed bankruptcy and we've lost our vehicle, I am alone and awaiting to find out if I qualify for disability, and Friday my bday, Craig killed himself. ..

So forgive me if I sound a little fed up ( in my post) and when reading about hiding posts to protect newbies...I AM A NEWBIE!!! I am still trying to grasp T and how invasive its become this month..the fear will it get like Craigs? afterall I have TN too!

Anyways I didn't mean to go on..I just don't want Craigs story hidden..and it's not in our fb group where he spent his remaining time posting and for that I am thankful we can openly grieve without being told to go someplace else..I just want his story out there, like I wanted docs to give a damn and at the very least prescribe him Potiga!! but they wouldn't. .even knowing he was on the brink-his last hope..it was devastating and for all the members who are in living hell still, it's devastating.. I am just saying. .you are one of the " lucky" ones..no its not lucky to have severe T but you state you are alive happy and habituated? but not everyone with T is and not for years and its tearing their lives apart. .like Craigs life, so what about them? It's stories like Craig's that get noticed, or Gaby's but not if its hidden.

So Craigs family asked for donations to be made to The American Tinnitus Association, so perhaps we can all shift this thread back to honouring him and make a donation.

I am a good person @billie48 and I understand your intentions, I was that newbie being petrified over a story online, but I suppose now I live in reality and see that not everyone will get better..not everyone will survive TN or even severe T or H and some jsut wont get better, but worse with all available help.....it just is what it is abd thankfully for the newbies with T and H, chances are you and hopefully I will get better!...
.again and truly...peace out

We will see what mods do.

 

So sorry to hear about your sufferings, Lynn. It is heart broken to hear what happen to you & your family. Just hang in there, Lynn. Wish better days await you and never lose that hope. I pray that treatments will become available in the near future for those in dire need of relief for their T & H related sufferings. Sometimes, with the best of intention about the need to be positive and to soldier on, it is not enough to save some from the unfortunate ending. I recognize there is a limitation on the mental approach for some and sure hope more treatments from the medical fields will be forth coming to help out the extremely severe case.

I don't know if I am shielded from my T suffering 100%. Last night I was woken up by extremely loud and ultra high pitch dog whistle. It is absolutely insane loud in the silence of the room. Usually, in my semi conscious state my anxiety/panic prone brain is most vulnerable. It has been programmed to panic from the past 30 years of suffering the panic disorder and it would pound me hard in that semi awake state. I had no choice but to put in the ear buds of my ipod just to keep on sleeping. But that prevented me from hearing my wake-up alarm in the morning so I am late to work this morning, LOL. So, even with positivity stance, I am not shielded from T suffering all day. But at least thinking in more positive way, it has helped me in my waking hours.

My apology to you and to Dan for interrupting this thread. I was only echoing the feeling of others after reading a few posts from struggling members who get more anxious about their prospect of surviving their severe T. Again, I am saddened like everybody else about Craig's passing and the devastating grief of his family. I have lost my only son at 5 years of age to a freak accident and I had the misfortune of watching him die in my arm covered in blood. I know how immensely painful to lose a love one. My condolences to his family and I hope Dan's grief of losing a dear friend will ease in time. RIP Craig.

 

Was Craig a member here on TT?

I'm so sorry to hear about the loss of your friend. My heart breaks at the loss of anyone because of damned tinnitus.

 

@billie48 thank you and how truly and very sorry I am to read about the loss of your son. As a mother I can not imagine

I have dealt with anxiety disorder since age 11..I know how the brain gets hardwired into panic mode as first response..I also wake up to very loud T in the middle of night. .I swear it's physiological. .anyways....peace be with you.✌

 

according to Dr Nagler tinnitus sufferers commit suicide no more frequently than the general population--- where's that data from Dr?-- seriously... I know of anecdotal evidence of 3 tinnitus sufferers commiting suicide since the first of this year... I'm on other forums and haven't heard of one person ever committing suicide... the truth is the truth even if its ugly... perhaps we should send the ATA a notification every time someone with tinnitus decides to end their life

 

My point exactly. This tragic news needs not to fall not so much on our ears but the ears of the public who are completely unaware of this terrible condition. I agree Mpt, The ATA should be notified. We need to advocate a sense of urgency in the medical community as to how debilitating this is. I did not know Craig but now that he is in spirit and finally at peace Im sure his message is one of please make the medical community more aware of the urgent need for a cure! We need to use his struggle and the other T sufferers that have taken their lives as a message to others in power in the medical field to take this more serious. The admins should draft a letter with Craig's story and send it to all the CEO's of corporations that could possibly help find a cure for this condition.

I feel that the US Government is also to partly to blame, spending millions and millions on weapons designed to destroy others but not even spending a fraction of that to research funding to help the courageous soldiers that are debilitated by tinnitus in which they caused......and yes the suicide rate among veterans with tinnitus is most likely a lot higher than any media statistics that they release..my guess.

 

My neurologist suggested upto 1200mg of Tegretol / Carbamazepine. Make you sleepy / drunkish he said.
You slowly need to build it up and slowly taper off. 1200mg seems ridiculous as they give 2000mg for patients with epilepsy. My Dental surgeon suggested 200 or 300 or so.

 

I didn't know the man, but we don't owe it to him or ourselves to fall apart. Our chances haven't changed.

 

300-600mg sounds about right. 1200mg is ridiculously huge.

 

Sorry to hear that

There really needs to be a cure. Tinnitus is torture. I feel so sorry for anyone that has the smallest form of Tinnitus. I really cannot believe there is not a cure for this. There are lots of dieseases which can make you very sick but you can have moments of peace and silence regardless. With Tinnitus there is always noise 24/7 and there is not a second of peace and silence. If I was rich I would donate so much money to find a cure. I hope they find a cure and soon. It will save so many lives and make life so much better for people like us.

R.I.P Craig

 

That's what I thought too,but he says you don't even notice low dosages.

 

1200mg isn't ridiculous..believe me..but many are on around 900mg

 

I was prescribed 900mg for my nerve pain..some are in 2000's with TN

 

http://reference.medscape.com/drug/tegretol-xr-equetro-carbamazepine-343005

 

oh thanks for posting that @dan I may have been thinking of Teg..