Brai3n Tinnitus Clinic

As for people with tinnitus "topping themselves left right and centre...." this is another often-quoted myth. The only actual study of suicide with tinnitus was a VA study in the US by Martz et al (2018) that looked at more than 750,000 veterans with and without tinnitus. This study showed that suicide rates were LOWER in veterans with tinnitus than without.

 

Unfortunately, there are no end of charlatans and con-artists who will try and profit from the victims of chronic incurable disorders, and tinnitus is no exception. This has been true throughout human history. The only 'good' news is that tinnitus won't kill you and, contrary to the widespread belief, does NOT increase your risk of suicide.

By the way, I too suffer from tinnitus - it started in September 2013 and is associated with age-related hearing loss.

 

I actually meant people were topping themselves left right and centre because of depression or easily surmountable life problems. Whereas we have a really nasty problem that we cannot fix or aleviate.

I cannot for a second believe that study. How on earth could that be possible? The military and governments just don’t want to acknowledge the problem because it would firstly put people off signing up, and secondly would then need addressing and money spent on a cure.

 

I beg to differ. I had and still have in many respects a wonderful life before severe tinnitus. Now I’m giving very serious consideration to killing myself because I feel absolutely tortured by noise 24/7. I have zero other problems in my life that I cannot foresee being able to overcome so on that basis I surmise with some accuracy that tinnitus can kill you.

 

I am sorry to learn that you feel that way but the research shows what it shows. Without wanting to trivialize what you feel, thinking about suicide is much more common that committing suicide (thank goodness). Your emotional state may suggest you should discuss this further with your doctor.

 

And that’s the problem I guess. Which is why my death will be chalked up to depression and the frustration of every other sufferer around the world is exacerbated still further. Because the ‘research’ says we shouldn’t be in the least bit bothered by this.

So how come I got through 37 years of life one of the happiest, most outgoing and fun people you could care to meet who never took happy pills and had a passion for life and now suddenly after the advent of screaming noise arriving in my head, I want to die every single day?.....What does the research say about that doc?

 

Published research, and my own clinical practice, shows that the emotional and mental state is a HUGE element in tinnitus. I just don't understand how you could possibly interpret what I said as "the ‘research’ says we shouldn’t be in the least bit bothered by this."

Antidepressants are no more 'happy pills' than insulin is an diet pill. Your current emotional state sounds like a significant depression which is an illness in its own right and treatable but I cannot diagnose over a forum chat line so you must consult your own doctor.

 

With all due respect, I have been analyzing all sorts of websites on tinnitus ever since I got this condition on 01/2014 and I have encountered so many tragic, heartbreaking notices of suicides that I eventually lost count. This includes reporter's articles from interviews with the ATA, personal stories on all sorts of YouTube Sites, reports from the British News Media, and most tellingly the number of sufferers who once posted on this forum who were never heard from again (or who we learned about for a fact).

Let's not forget the consequential pathologies from this condition such as alcoholism, drug addiction, divorces, incapacitation that led to lifelong reclusiveness, domestic and other forms of violence, lives generally ruined that led to homelessness, and misdiagnoses that led to treatments for unrelated mental illnesses.

 

Dave until Dr’s like Ancill accept that this is the reality we are constantly fighting an uphill battle to have our condition recognised as life destroying. This thread is basically my worst fears confirmed once again. Another Dr telling me it’s my depression and mental state that is the problem and not the god awful constant noise searing through my head on a never ending loop. I’ve almost gotten to the point where I wish the entire world was suffering this so I don’t feel like I’m screaming in to a brick wall.

 

I totally understand your pain and frustration. I read your introduction post and see you have been through a lot, have you ever tried a stellate ganglion block for PTSD and your chronic pain? There is even a thread about it here.

I know someone who went to Chicago and had very good results with doctor Lipov.

Treating PTSD with the Stellate Ganglion Block...

There is one more clinic in the world that provides this procedure and it's in Bristol in the UK by Dr Krishna.

Interesting stuff.

https://www.painspa.co.uk/procedures/stellate-ganglion-block/

 

You sure about that?

 

If we are talking about using it for PTSD which requires a different approach than a standard procedure of a SGB, yes, I believe so.

I know thousands of clinics offer a standard SGB.

 

Well I went to Brai3n but only did the qEEG and consultation. About 300 EUR, plus the consultation for Dr. De Ridder, which was also a lot. That plus the travel expenses is already a month's salary in some countries.

I heard that there are a lot of patients, about 230 patients in the last 6 months since the centre was opened. In my opinion it's quite a young organization with a lot of organizational problems.

I'm hesitating to bring my good money to them just for some neuromodulation. I am in fact in direct contact with some of the patients that went to the centre.

The thing is that this field is very new, unproven, there are absolutely no guarantees it will help, or even get worse, so your best bet is to bring your wallet and pray that it doesn't get worse when they start. And yes they stop when it gets worse but it's already too late then.

Maybe I will go there when my financial status is better. Oh and by the way they first let you try Deanxit & Rivotril to see if that helps. There are topics on Tinnitus Talk about this already.

Also @Jan64 went to Brai3n.

 

Is Dr. De Ridder back in Europe? He moved to New Zealand some years back?

 

Yes he's apparently back in Belgium.

 

He is from time to time. 3-4 times a year he is able to see patients in Ghent (Belgium). I visited him and he did 2 things:

-Requested my MRI images
-Prescribed Deanxit and Rivotril

The rest of the time he is flying around the world attending conferences, maybe doing brain surgery, who knows. I don't have his agenda haha. He is quite friendly but other than prescribing the pills, looking at your MRI to look for brain malfunction and recommending the neuromodulation there is not much he can do AFAIK.

Most people that visit Brai3n either visit their ENT Dr. Boedts or request the neuromodulation that is done by Jan Ost. Their female assistent helps with administration and some people also got a hearing test.

In some years time I see the centre as a machinery where people go in and out for the Neuromodulation. For now it's just a villa with some rooms but in a few years time if this pace of patients keep coming they certainly will move to a bigger location.

 

I find that hard to believe. Was the tinnitus rated or 'scored' as mild/moderate/severe?

 

That does not seem to be true, according to this study:
https://journals.lww.com/thehearing...l_Ideation_Among_Patients_with_Chronic.6.aspx

In particular, see Suicide Ideation rates in US
- over 50 years old: 2.7%
- adults: 3.9%
- tinnitus sufferers: 16%

Wouldn't you say that a jump from 2-3% to 16% in suicide ideation can be fairly interpreted as a significant increase in risk of suicide among tinnitus sufferers?

 

The increase in suicidal ideation may be correct, but that does not necessarily translate into actual suicides. It is currently recognized that not all suicidal thoughts reflect intent and many may be ruminating and being more obsessive than self-destructive. Because we cannot ask them, it is also not clear if successful suicides have lengthy periods of suicidal thinking or are impulsive.

That 16% figure is often quoted but is not from published epidemiological research. Actual research into the incidence of suicide risk in patients with tinnitus has failed to find any increase. Having said that, I take suicidal ideation in any patient very seriously and arguing about numbers does not alter my clinical practice.

 

Dr. Ancill, with all due respect, please can you describe the tinnitus sound or sounds you hear?

Personally I hear extremely piercing screeching in both my head and ears nonstop. It’s very physical as the screeching hurts my ears and disrupts my sleep. I am slowly deteriorating because it’s so intense and I never had to take any meds to get by in my life and rarely had to visit a Doctor.

If you would kindly describe what you hear I would appreciate it.

 

Mine is more of the classic complex hissing sounds, around 9,ooo Hz. It runs about 30 decibels in volume. This is the more common form associated with age-related hearing loss.

 

Thank you.

 

@Dr. Ancill, as a psychiatrist, what is your view on the long-term use of benzos?

Do uou have an idea what percentage of your patients have trouble coming off them or what percentage can keep taking the same dose for a lifetime without hitting tolerance?
Are there any statistics about this?

 

Oh great. Better to live in so much suffering that you want to kill yourself, than actually going through with it and killing yourself... Glad we cleared that up doc.

 

That is true, and can be said of any condition - the suicidal ideation for people with Chronic Pain also doesn't necessarily translate into actual suicides.

However, your claim was on the risk of suicide, not the actual "going through with it". For reference, this is what you said:

It seems to me risk is isomorphic to ideation, irrespective of the conversion rate.
I understand risk to be, by definition, not a sure thing, and to represents the likelihood of an outcome instead.

I don't understand the comment about "actual research". Do you mean that the research paper I quoted cannot be trusted?

If so, can you explain how you can tell the difference between studies you can trust and those you don't? It's not completely apparent to me, because it seems to have been conducted by a Ph D researcher and published in a journal that appears to be legit. I am not an expert in the field, so I'd welcome pointers.

 

I think that arguing about actual incidence and whether is is higher, lower or the same in tinnitus sufferers is not a useful exercise as statistical data does not help with an individual case. Any level of suicidal ideation must be taken seriously and approached with urgency. One general and sobering finding is that the majority of successful suicides have seen their GP or therapist in the 3-4 weeks before killing themselves.

 

Their GP probably told them to “live with it”.

 

This is a great question but one that does not have a simple answer.

Some people have a lack of intrinsic 'benzodiazepine' and, like diabetes, require a benzo medication to normalize their neurochemistry and they might well be on the benzo for life. This is, fortunately, only a small proportion of patients. Another group is patients who are being prescribed the benzo incorrectly, say for a chronic anxiety or depression where an antidepressant is better indicated. For those that benefit from the proper prescribing of a benzo, it is the clinical response of the patient that determines what is done. Some will need perhaps one dosage increase and many can reduce (slowly) the dose and come off the medication without a problem in time. The main issue with withdrawal from a benzo or an antidepressant is that it is not done slowly enough - it might require many months to do this.

At the end of the day the important issue is whether or not the patient is better on the treatment, however the patient defines 'better'. The rule is the dose that works for the time it is required.

 

Perhaps not on an individual case basis, but it does serve as a good proxy for a distress level of sufferers.

Why is that useful? Because many actionable items derive from the perceived importance of a condition, and the resources invested behind them directly correlate with that perception.

It also means that practitioners should be wary of making the usual "it's no big deal" comments to a sufferer, or "the good news is that it won't kill you", because it trivializes the condition and creates a gap in perception between the doctor, who is an undeniable authority figure when it comes to health, and the patient, who generally entrusts the doctor with his/her biggest asset that is his/her health.

When there is such a gap between what the doctor and the patient assess in terms of distress, the patient loses hope that his/her distress is going to be taken seriously, and therefore addressed appropriately.

I'm not sure why it's sobering. It seems to tie into the point I'm making above: if we find that patients see their doctors before they commit suicide, there may be some causality to investigate there, in particular if they feel they don't acknowledge how bad they are suffering.

Acknowledgement is the prelude to a cure, since we don't fix what we don't acknowledge. Denying such acknowledgement can easily be perceived as denying any relief for the sufferer. From that hopelessness, it does not seem too contrived to connect the dots with suicide.

 

Thanks for your answer.

So in your experience most of the long term benzo users do not have to increase their dose to achieve the same anxiolytic effect?

If you do a search for benzodiazepines you only get the bad experiences but if you look at the research it isn't common to hit tolerance or to have bad withdrawals.