http://www.chat-hyperacusis.net/post/found-cure-6904301 Anyone happen to had a chance to try this? Eg. for tremor and did it help with hyperacusis. Feel free to answer anytime you pop inside this thread, this topic is timeless. If theres more happy "accidents" with this drug, it just might be worth to take a closer look into this, wouldn't you say?
Is this something you have to get prescribed by a doctor? Since it's for parkinsons I really can't see how one could get a doctor to prescribe it for another issue. And also, I think that H just like T is a very complex disorder, and one thing that works for someone will probably not work for everyone. Some people have been completely cured with xanax following this protocol http://www.chat-hyperacusis.net/post/jack-vernon-and-hyperacusis-xanax-protocol-5929777 while it had little to no effect on others. @Dr. Nagler what is your take on this?
Sounds like a heavy drug. I will be seeinh a neuro soon so i will ask about it. (If i can pronounce it ) lol however, doubt most docs would prescribe for h as most don't even know what h is. Cool post though,thanks for sharing
@lapidus posted: Dr. Nagler what is your take on this? Is [trihexyphenidyl] something you have to get prescribed by a doctor? ............... Yes. ................ Since it's for parkinsons I really can't see how one could get a doctor to prescribe [trihexyphenidyl] for another issue [like hyperacusis or tinnitus]. .................. It is called prescribing for "off-label use" and is actually a rather common practice. For instance, back in 2005 the biggest craze in tinnitus treatment was Campral (acamprosate), a drug approved for use in the treatment of alcoholism. What happened was that a couple of investigators from Brazil published a really terrible study showing acamprosate to be 87% effective in providing significant relief in the treatment of tinnitus. Word spread across the tinnitus community like wildfire (through support boards), and everybody was asking physicians for prescriptions based on the study. So thousands of prescriptions for off-label use of acamprosate were written. (Subsequently the flaws in the Brazilian study became evident, and a meticulous reliable conclusive study done by respected investigators at the Oregon Health and Science University in Portland showed acamprosate to be no more effective in the treatment of tinnitus than placebo.) Having been there myself, I can readily understand how in their desperation, tinnitus sufferers will willingly grasp at anything in search of relief. But please trust me on this: When a treatment (acamprosate, lipoflavinoids, ginkgo, LLLT, acupuncture, whatever) is found to reliably mitigate the tinnitus signal in a statistically significant percentage of the tinnitus population, everybody will know about it. ................. And also, I think that H just like T is a very complex disorder, and one thing that works for someone will probably not work for everyone. Some people have been completely cured with xanax following this protocol http://www.chat-hyperacusis.net/post/jack-vernon-and-hyperacusis-xanax-protocol-5929777 while it had little to no effect on others. .................. Well, if you go to the above link and read through the thread, you will see reference to a member who was a close friend of Dr. Jack Vernon. I am that close friend of Dr. Vernon's. But Xanax does not cure anybody with hyperacusis! Dr. Vernon, ever the optimist, noticed that a handful of folks showed improvement and spoke about it. But the effect was no greater than placebo. Just because a person shows improvement after taking drug A, that doesn't mean that the improvement was caused by drug A. Same with Xanax and tinnitus, by the way. Xanax is probably the most common drug prescribed for tinnitus; however, the 1993 Johnson, Brummett, and Schleuning study that stimulated all the interest was poorly controlled, and the findings were never duplicated. Any effects of Xanax on tinnitus are achieved by decreasing anxiety (which is what Xanax does) and not by mitigating the tinnitus signal itself. Hope this helps more than confuses. Stephen Nagler
Thank you @Dr. Nagler for an awesome and educational reply "When a treatment (acamprosate, lipoflavinoids, ginkgo, LLLT, acupuncture, whatever) is found to reliably mitigate the tinnitus signal in a statistically significant percentage of the tinnitus population, everybody will know about it." Yes, that we will. However, I think when it comes to H, it's a bit different. There has been so little research done on H that the "grasping" that you mentioned is somewhat even more understandable because so little things has been tried to treat H medically. If someone reports that they have found relief with some medication, we will be there in a heartbeat, trying to find out stuff about it. Thanks for the info about Dr. Vernon's xanax-protocol, even if it was somewhat of a downer
@lapidus posted [in part]: There has been so little research done on [hyperacusis] that the "grasping" that you mentioned is somewhat even more understandable because so little things has been tried to treat H medically. If someone reports that they have found relief with some medication, we will be there in a heartbeat, trying to find out stuff about it. ................. As I see it, grasping at straws is related to misery and desperation, regardless of whether we are talking about hyperacusis, tinnitus, or whatever. It's the stuff charlatans and scam artists thrive on ... Stringplayer's Second Law: "The degree to which a person will apply common sense and logic in search of relief from a malady is inversely proportional to the square of that person's misery and desperation." Stephen Nagler
@Dr. Nagler said: "As I see it, grasping at straws is related to misery and desperation, regardless of whether we are talking about hyperacusis, tinnitus, or whatever. It's the stuff charlatans and scam artists thrive on ..." Yes, I totally agree. But in this particular case with Trihexyphenidyl, I think we can rule out scam artists since it's real doctors prescribing it. The person who reported success with this has nothing to gain by doing that, so to speak.
My T is very loud in the morning. When I take my morning xanax it softens--a lot. This seems at odds with what you said above as I am not anxious upon awakening so the xanax is not just decreasing my anxiety. I do agree that it does help my anxiety thereby helping my T, but I also know that it softens my T noise itself. Is it a fluke?
Well now we are sort of getting into the issue of what is loudness and how is it best determined. There is absolutely no reliable and verifiable evidence suggesting that Xanax lowers the strength of the tinnitus signal as reflected in the tinnitus loudness match. But how loud the tinnitus sounds to you at any given point in time as reflected in the tinnitus loudness rating is related not only to the strength of the tinnitus signal but also to what your brain does with that signal (i.e., central auditory processing) though any of a variety of mechanisms - some obvious and some not-so-obvious. Bottom line: If you perceive benefit, that's what matters. Whether or not it is the direct result of the pharmacological action of the drug on the tinnitus signal is largely irrelevant in that regard. Stringplayer's First Law: "No tinnitus sufferer who found even a moment of relief cared one iota whether or not there was any science involved." Stephen Nagler
I agree that in the case of trihexyphenidyl there is no scam. Of course, that doesn't mean the drug actually works for hyperacusis. Now, as far as your suggestion that real doctors can't be scam artists (if I understand you correctly), I beg to differ. I myself have been scammed by two real doctors, which is one of the reasons I happen to feel so strongly about the issue. Stephen Nagler
I love that quote! This weekend when I don't have to go to work, I will try delaying my morning Xanax and see what happens. It could be that my T is loud in the morning because our bodies pump a hormone into us that says WAKE UP? The reason for my concern is that it softens my T so much sometimes that I'm afraid I'll never habituate. I've seen Stringplayer on another board in my research. Good guy, that Stringplayer.
Turns out that he and I live in the same town. I have gotten to know him quite well over the years. Stephen Nagler
Interesting. thi, post: 47542, member: get. 531"]I love that quote! This weekend when I don't have to go to work, I will try delaying my morning Xanax and see what happens. It could be that my T is loud in the morning because our bodies pump a hormone into us that says WAKE UP? The reason for my concern is that it softens my T so much sometimes that I'm afraid I'll never habituate. I've seen Stringplayer on another board in my research. Good guy, that Stringplayer.[/QUOTE] Interesting..my t is quietest upon waking..
That sounds horrible I don't think that even can happen in Sweden since we have free healthcare that is regulated by the state and private clinics are few and far between.
Apparently the moderators at the H network deleted the thread recently about trihexyphenidyl. I have no idea why. @Dr. Nagler I don't know if you've read this yet as it was released very recently, but it have some interesting info regarding our earlier conversation in this thread about treating H with alprazolam and Dr Vernon's Xanax-protocol. part 1: http://hyperacusis.net/resources/hyperacusispart1.pdf part 2: http://hyperacusis.net/resources/hyperacusispart2.pdf If you look at part two there is a section titled "medications". This is what it says: "The use of medication to treat hyperacusis has not been investigated in clinical trials, but interest is high. The published work is limited to clinical case reports. Johnson, Brummett, and Schleuning (1993) described the use of Alprazolam (a short-acting anxiolytic) in five patients presenting with tinnitus and hyperacusis. A complete remission of hyperacusis was observed after 8 weeks of treatment. Nields, Fallon, and Jastreboff (1999) described the use of Carbamazepine (an anticonvulsant and mood-stabilizing drug) for the relief of hyperacusis in two patients diagnosed with Lyme disease. Gopal, Daly, Daniloff, and Pennartz (2000) described the use of selective serotonin receptor inhibitors (Fuvloxamine and Fluoxetine) for one patient with complete remission of hyperacusis and increase of ULLs. Some anecdotal success has also been reported for Citalopran (another selective serotonin receptor inhibitor). Controlled studies are needed." Now this says "a complete remission" and you stated that no one who benefited from xanax was cured. What exactly does "complete remission" mean then?
Sorry, but I really have no idea. There are a number of problems with those two review papers. The reference to a "complete remission" is but one of them. Dr. Stephen Nagler
@lapidus I know this thread is very old, but I had not come across it before. Do you happen to recall what the poster on the deleted Chat H had said about trihexyphenidyl? I did a search on trihexyphenidyl at Chat H but the deleted thread was not reposted (once in a while they seem to repost threads that had been deemed controversial and deleted, but not in this case apparently). Many thanks in advance if you happen to recall.