Acamprosate (Campral)

As a physician, let me support Dr. Nagler who is being honest and helpful to everyone who reads and posts on this board. I agree that a cure is well beyond our current medical and therapeutic technologies. I worry about those who are waiting for a 'cure'. I am especially concerned about the 'snake oil salesmen' who infest these boards offering treatments that cannot possibly work and false hope to tinnitus sufferers who are not coping well with the condition. I too have tinnitus. In my case it is age-related and after 2-3 months, I did habituate. It is just as loud as it always was but it does not bother me nearly as much and I have learned various techniques to use when it does.

 

You have to understand the statistical basis for a trial. Typically, a study will be published and show a so-called positive result if the result has a significance value of 0.05 or less. That means that this result could only have occured by chance 1 out of 20 times. That sounds pretty convincing, but it also means that for every 20 such studies, one at least occured by chance. All positive results should be replicated by a different research team and if they too get a singificant result, then we may be onto something. Unfortunately, more that 20 years ago, the British Medical Journal reported that almost 30% of published studies had either methodological or statistical errors.

 

In post #25 above, @Dr. Ancill makes an excellent point about the importance of verifiability.

And then there's the issue of reliability: Was the methodology of the study itself robust enough to justify that "so-called positive result" in the first place?

Stephen Nagler

 

Some excellent points in these last few posts. Speaking for myself, I also tend to favour results from triple-blind (or at least double-blind) placebo controlled studies, replicated by more than one research group. Gotta love the peer reviewed literature! But as the saying goes...to each his/her own.

Mike, PhD

 

',to

I think crowdsourcing is as apt find a solution to tinnitus as medical research. I am 100% for it. It's a bit of a shame that researchers don't tap into crowdsourcing more often. Hopefully they will someday recognize the value of it, and learn to harness it.

I know this is a bit off-topic for the title of this thread, but this thread has taken a turn towards the issue of reliability of information found on forums like this, so I would like to state my 2 cents worth (well, maybe 2 dollars worth since its a long post).

I find it pretty easy to sort out what is valid and what isn't when I am reading postings in internet forums. TT is a great site with little dis/misinformation in my opinion; that's why I come here . What I find difficult to sort out at times is the dis/misinformation that I've gotten from supposed experts in the medical community. (I'm not referring to any particular such posts on this site; I am referring by and large to information I have gotten from practitioners that I have paid money to).

My experience with such people goes beyond tinnitus, and in general I believe the professional medical community, as a whole, should be ashamed of itself. Clearly I don't mean to accuse everyone in that community of being a bad practitioner. Their are good practitioners, but they are far and few between. My unscientific guess based on my experience is that the bad practitioners outnumber the good ones 8:1.

In general, I find it much easier to get reliable medical information, and, for lack of a better way to express it, serious effort, from internet based sources than I do from talking to medical specialists. I find that few are as well informed about my medical problems as me. That is a bit of a frightening thing for me especially when I run across a medical professional who tells me something that I know with great confidence is flat out wrong. It's not an infrequent occurrence, and I have learned there is no point to even try to educate them, or provide counter arguments. No amount of fact based information from a mere patient ever gets through to them. Its an odd scenario when you run across a person whose profession is supposed to be science based who ignores scientific evidence. They are typically the ones who want to remind you that medicine is more art than science. I say "poppycock". If you believe it is an art, then you are not doing it right. What makes the difference between a good medical professional and a bad one is skill, innate talent, experience, craftsmanship, knowledge, perseverance, curiosity, great attention to detail, and most importantly, paying attention to the patient. None of those characteristics fall into the category of art in my opinion.

The other part of the problem when it comes to figuring out what is reality in the medical health world is, as someone else posted here, that many studies simply are not done well. Often times the professionals latch on conclusions from poor studies and put them to use without ever informing the patient of tenuousness of those conclusions. What is more often the case is when for financial gain tenuous study outcomes are foisted onto consumers as providing safe solutions when in fact they are not. You may think I'm referring to fly by night operations. In fact what I am talking about is a great number of prescription medications foisted on us by supposedly reputable sources. Never forget that these companies, despite all their corporate slogans are after money, not your health. There is some synergism there - i.e., if their product solves your problem they can make money. But that is not always the reality. They can also make money by selling you stuff that can hurt you as long as no one ever finds out about it. We've seen many times the selected data collection, and even falsified data scenarios that happen in the name of money. We've seen many times the cover-ups and selective ignorance of facts when these companies are called on the carpet. I'm not saying that when these these sort of things happen they are the result of diabolical plans to deceive. they are not. They are the result of laxness that sets in when the goals of the patient and the goals of the provider (whether it be a researcher, drug company, doctor, or hospital) are not perfectly aligned. The patient's goal is perfect health. The provider's goals are not as pure. Money, pride, status, prestige, laws, convenience, etc. all come before the customer's health, and clouds things even when the intention is to not let those things interfere.

There are also honest mistakes in the medical world as well. You don't have to do much research to find medical information that was once universally thought to be true to only later find it wasn't.

My point: the medical community is not pure, is not perfect, and is not that much less likely to steer you wrong as crowdsourcing or the internet. It's caveat emptor (buyer beware) at all times. You've got to be a critical and well informed consumer of all things, including medicine. It's sad that you have to do this while you're also dealing with being sick. At this point in time, we as consumers of healthcare have little control over the quality of care we get. In the US, we are at the mercy and ethical standards of healthcare providers, the government, and the insurance companies. Except in the most egregious cases where we can resort to law suits, there is little we can do to address the "imperfections" (to put it mildly), other than complaining and being selective.

 

Interesting.

I find that there is quite a bit of dis/misinformation here ... and that is why I come here.

@mick, I consider myself to be a reasonably bright guy. But if I were to go to an aeronautical engineering site, I imagine I'd have a tough time teasing the good information out from the bad - since most all of it would make sense to me in view of my lack of foundation in aeronautical engineering.

I suggest that the same thing happens here (as well as on other tinnitus support sites) for bright folks who come looking for information about tinnitus. How are they supposed to know, if they lack a foundation in the discipline?

Stephen Nagler

 

I think some of the posters can be too hard on the medical profession. The only reason we know so much is because we have the damn condition.

 

Since doctors are a minority on this board, I shall take their "side" in this sentence or two and state that I think the work done by the emergency services is very impressive. I also think surgeons and the advances in the field of surgery is impressive. Surgeons tend to be what I call no-nonsense doctors. They are down-to-earth, pragmatic, and speak clearly - providing essentially "yes or no" answers. I like that.

So ER personnel and surgeons at the top of my list. At the bottom you will find ENTs, GPs, and Neurologists.

Here are some quotes that doctors I have seen over the past year have made (in relation to tinnitus appointments):

"You should have a beer instead"
--Neurologist in Leipzig, when I asked for mild sleeping pills during the first few weeks of my tinnitus onset. Clearly this fool did not have any idea about the potential severity of tinnitus. His only interest was to rule out something serious (and I even saw him as a privately-insured patient).

"I have never heard of that"
--ENT in Leipzig, when I asked her about the AM101 clinical trials and explained to her that the active component is Ketamine; not only did she not know, but her day-to-day colleague - whom I saw the next day - is directly involved in the clinical trial rollout of AM101 in Germany.

"I think there might a psychological component to your tinnitus"
--My GP in Leipzig; her argumentation seems to be that tinnitus is something "old people" get and my audiogram "looks normal" - therefore my tinnitus must be due to "stress" or even "depression" (needless to say I have now given her "the boot" since this is the fourth time she mentions it...). Oh, and did I forget to mention that I have (also) had tinnitus since birth; according to my doctor's "philosophy", I guess I must have had a depression when I was in my Mother's womb.

 

Hi Jakob,

Regarding you are living in Leipzig,do you know or have ever contacted leipzig-kopfzentrum ? They seem to provide treatment of tinnitus such as intratympanalen Kortisontherapie injection.But not sure if it is effective.

Best Regards
Jacob

 

Hi @Dr. Nagler (and welcome back)

On the Acamprosate wikipedia page it says the following:

"Acamprosate has been successfully used to control tinnitus, hyperacusis, ear pain and inner ear pressure during alcohol and benzodiazepine withdrawal due to spasms of the tensor tympani muscle"
http://en.wikipedia.org/wiki/Acamprosate

Since violent/agressive tensor tympani spasms seems to be one of my worst symtpoms because of severe H, I was wondering if this might be worth trying? I doubt it would work on T, but could it treat TTTS and maybe H? Would you consider this safe to try?

 

I tend to take everything I read on Wikipedia with a huge grain of salt. I am unaware of any quality studies that substantiate the above assertion regarding acamprosate.

Dr. Stephen Nagler

 

I took campral for a few weeks, based on some of these studies. I believe I started at 150mg/day and worked my way up to 600mg/day.

It had no discernable effect on me, either on my tinnitus or in general.

 

Yes I am aware there are flaws in wikipedia as a source. But my question was if you, as a doctor, would consider this medication safe to try. Or could it worsen H, TTS and T?

 

@lapidus, I am unaware of any studies suggesting that taking acamprosate would worsen tinnitus, etc.

Dr. Stephen Nagler

 

Its in german: http://www.fid-gesundheitswissen.de/hno/tinnitus/tinnitus-bald-ein-medikament/


In English:

Soon, a drug to treat tinnitus?

Currently, no treatment for tinnitus is approved. However, the active ingredient may Acamprosate, which is normally used in the treatment of alcohol dependence, may prove effective.

Recently a study was conducted with patients suffering from tinnitus with hearing loss. In 87% of study participants who had been taking Acamprosate, the symptoms improved significantly. In addition, the drug caused fatigue, which for patients in whom the tinnitus causes sleep problems, can be positive. However, further studies are required to explore the potential of Acamprosate for the treatment of tinnitus.

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

 

I'm gonna get some Campral soon, so I'll see if it works. I heard it can help some people, so worth a shot.

 

Is it a herb

 

No, it's meds

 

mammal these things have side effect stay away from it

 

That's cool. It's your decision after all.

 

Why are you negative

 

I'm not? I don't want to encourage anyone to try drugs they don't want to. I'm not like that.

 

@attheedgeofscience tinitus since birth does not exist.
Because acoustic memory does not exist.
If you mean T in small age yes does exist but it is rare.
In general T does not exist in totaly deaf people from birth
because they not develop acoustic memory.

 

I take comfort in knowing that I can always rely on your infinite wisdom of just about anything and everything. With such superior knowledge I am, however, a bit perplexed as to why you still have not picked-up a Nobel Prize, for instance.

Perhaps you have?

 

Ok if you have memory & acoustic memory and you remember your T as newborn i have nothing else to say.

 

I was able to remember my earliest sounds heard in the womb, but, to be fair, doing so required a lot of LSD and tantric sex.

 

Hahaha!

Anyway, has anyone thought that this may work in a limited timeframe like AM-101?

 

I don't think there's much evidence that it works at all. A couple low-impact papers in obscure journals that suffer from various methodological problems...

 

Still, AM-101 is basically the same thing...So as I said, is there a timeframe?

 

No it's not, even slightly? I've taken campral. I've taken ketamine. They are not remotely similar. Yes, they are both NMDA antagonists. Big deal, so is chamomile tea, go cure yourself with that.