Search results for query: *

Any idea why your sources would claim this? They have done several double-blind studies with over 500 patients each and rare side effects seem to be headache and urinary tract infections BHV3000-303 (NCT03461757) BHV3000-302 (NCT03237845) BHV3000-301 (NCT03235479) BHV3000-305 (NCT03732638)

Study shows that chronic tinnitus can be measured with ABR (Audiometric Brainstem Response). Also Decibel Therapeutics are mentioned in the article so they are somehow involved. Short article: Constant Tinnitus Is Linked to Altered Brain Activity Long version: Alterations in auditory...

Hi It requires several injections. You can find more links etc. among the posts in this thread. Grate_biff is possibly the second person to get it for Pain H as far as we know, so there is not a lot of data around. You can read this article...

Sounds fantastic! Glad you are doing better. I hade not realised that the SGNB was side specific. But if the noxacusis was bilateral and you noted a one-sided improvement then its strong proof that it works.

I am sorry to hear that, and also glad that i seems to be OK. This spring I was 100% dependent on my mother for surviving and she was there for me every day. Losing that person... I can't imagine. I was a shock when I read the first paragraph. Take care and hope that you and your dad both...

This is a bit worrying... I thought she was doing a trial to follow up on the case study. Did she mention why she and the pain doctor have not continued investigating the SGB? @grate_biff Good luck on Friday!

Just one more month! Really hope it works for you. The impression I got from the email with Myriam was that Botox had the most permanent effect. If you have not done so already I would drop her an email and ask if she has learnt anything more about the procedure. She was very quick to reply. As...

Hi Matt, Do you live in Australia where Myriam is based or is the consultation done online? Also, what is the difference between H and Acoustic Shock Disorder? I have read some papers on these topics but it's still not clear for me...

Hope your condition has stabilized and that you are back to normal. I had lidocaine a couple of years ago during surgery and remember waking up with silence in my ears (Which turned out to be temporary...). Anyway, good news that he is willing to do an actual SGNB! Considering that you...

I have it most of the time, and it is increased after noise expousure. It started out as pure loudness hyperacusis, but hte last couple of months the pain has become more constant. I also have troubles sleeping with my bad ear on the pillow. I might try gabapentin, but my doctor suggests other...

I get pain in my ear, jaw and even tongue after exposure above my LDL. Does the gabapenin affect that pain as well in your case? (Do you also get lower pain after expousre)

There is a Facebook group called "Hyperacusis Surgery Success" where more information is shared, though mostly in anecdotal format. The papers only covered surgeries up until 2017 and there have been many done since then.

@Markku and @Hazel, I realise I am past the deadline. I have not been able to follow the forums lately due to photophobia and I must limit my screen time. If it is not already covered in the surveys I hope it's possible to add a question: What is Bryan Pollard's view on the Round and Oval...

Congratulations Sean! I eat a lot of carbs and dairy.... maybe I should try this. How long after changing your diet did you notice these improvements? Was it 1 month after starting the diet?

I came down with severe Photophobia, primarily from computer screens and phones. So I have basically been offline for 6 weeks now. Just received an e ink moniter (like Kindle) and I am able to surf a bit now. I think my brain has gone haywire since my H became severe because of the stress and...

They are continuing doing this procedure. There is a new FB group that Herbet Silverstein actually joined, though he is not very active. They seem to be doing this surgery at a rate of at least twice a month. Some Q&A: 1 How much does the surgery cost: "We accept most insurance company...

Switch earmuffs to Bose QC35. They are as good as your earmuffs for engine and road noise, and you can play the radio through them. Of course you will still not hear that much from the car, but that is kind of the point, is it not? I have a old Porsche from the 90's, and it is unfortunately...

Fascinating story. Really. I am considering to take "the leap" and stop using plugs at times... but then I hear a sound and feel pain, and decide that its a bad, bad idea. Also, the first time I recovered by protecting my ears. Basically, there are "success stories" from those that use...

This relates to Hyperacusis in particular: There is basically no research. There is are some CBT studies and low quality sound therapy/TRT studies. There are anecdotal reports of ADs and Anti-seizure drugs that help sufferers. These drugs are sometimes used in clinics where the doctor has...

I have had an mild impingement in my left shoulder for many years, and yesterday I made some movement so that I injured my healthy shoulder. I now cannot reach for anything above my head with either arm. I'm hoping to get a cortisone shot tomorrow. I have had them before and its not considered...

Liberman et al. wrote that. If it is that simple to regenerate just to inject, why is the drug still in "Drug Discovery" phase of Decibel Therapeutics? https://www.decibeltx.com/pipeline/ There is a reason those bright minds at Decibel Therapeutics have decided to not yet initiate Phase 1...

The Swedish equivalent to the FDA has Tinnitus as a "Common" side effect for Venflaxine, meaning 1% to 10%. Im sure this is based on something more than two case reports? Venflaxine is an SNRI and Fluoxetine an SSRI. I guess there is some difference there?

*Update* I have not read all the chapters. My view so far is that as a book it is a schizofrenic mishmash. There are many high quality components though. Each chapter is contributed by a different author. Some chapters are technical and/or science focused, such as the "Peripheral Mechanisms of...

I bought the book. There are 16 very interesting pages in the chapter "Peripheral Mechanisms for DST". They cite Liberman many times when discussing synaptopathy. They thoroughly discuss possible mechanisms for loudness increase as well as pain. I will put in some paragraphs later, but this is...

Hi, I had been using Peltors X5A and X4A constantly from October to Jan. I never felt any problems... Then one night in January I slept with the Optime 95, which I will regret. I woke up with Jaw pain and it has not settled. I cannot use earmuffs anymore, which is a huge issue with severe...

There are millions of Americans with hearing loss, and only 16 of them had a FX-322 injection. I guess there are a couple of thousand active members on Tinnitus Talk. Also the NDA as mentioned!

Are there any statistics on this? I realize they all might be clueless, but the ENTs I've met (some with Tinnitus focus) all say. "Take ADs and you will get better" I mean, they are like 70, so they must base those statements on their long experience of treating patients, right?? (I just go...

It can get extremely bad. I went to clubs and concerts for four years after initial onset of mild tinnitus and hyperacusis, and I was fine. I got some increased tinnitus before going to bed, but that was all. Until one day, it wasn't.

https://www.entandaudiologynews.com/reviews/book-reviews/post/hyperacusis-and-disorders-of-sound-intolerance-clinical-and-research-perspectives I smell TRT: "A key strength of the book was the range of case studies which will remind clinicians of cases they have been involved with. The...

Do they actually have this at your library? This book is only about hyperacusis, while the other one was about tinnitus and hyperacusis. That's a difference... So I hope that it's not just an update. I am curious about this "evidence-based clinical research, and case reports provides...

Maybe... "This book highlights the importance of a multidisciplinary approach and discusses the importance in creating clear definitions of each type of DST. The concise chapters of the book make it easy to dip in and out of each subject area. The reader gets a detailed overview of a variety of...

Fascinating statements. I wonder how they view cases like us. I got my 2nd relapse from a restaurant that had safe levels (i'd say 75 to 85 dB) for 2 hrs. It's like they just ignore us because it does not fit in their model. And I agree... our "normal" world such as supermarkets or walking the...

Can you link to this article? I am seeing an ENT tomorrow because of my jaw pains... I don't know what to say when I read this. Going back to Hazel's original question: How can we educate ENTs/the tinnitus research community in these things that are "no brainers" for us sufferers? Of course...

I read your post now. I was in your position... I had had very mild tinnitus for 4 years and it had basically disappeared. I thought I was OK. However, there was damage and the threshold for new damage had been lowered. Life as I knew it is now over for me. I cannot go outside without 100%...

@marge Exactly! You might have hearing loss. But it does not mean your T will not get better which is what matters. And whatever hearing loss you have is probably not an issue in your daily life (except for the T it is causing). One reasons ENTs don't know much about this is because there is...

What parts specifically do you dislike about their view?

https://www.amazon.com/Hyperacusis-Disorders-Sound-Intolerance-Perspectives/dp/1944883282/ This book was published half a year ago. Has anybody read it? Do you think there might be any insights that are worth the 70$?

When reading this I just think of how far the scientists are from understanding tinnitus and hyperacusis.

There is a risk you will get pain from this test (if you dont say "stop" early enough) The value could be to measure improvement or if you are getting worse over time. However, I certainly don't need an LDL test to know if I have improved or gotten worse.

Thanks for the great input and research. Some comments and questions: Do we know that this compound is difficult to manufacture? Or reasons to believe it would be? I think these are median years, and there are drugs that take longer time and that take shorter time. The fact that the trials...

Just an example: Say it turns out you need the cochlea to be continuously exposed for 10 days for a hair cell to fully grow. If an injection stays say two days in the cochlea, one injection would have zero effect as the hair cells would not develop within that time. Two injections would also...

True as well! Conclusion: We have no idea :)

True, assuming a linear improvement. However, the effect might be exponential...

True. Still. If they had absolutely zero improvement in phase 1, I doubt they would be so cocky to talk about fast tracking the drug (?). They treated enough patients to have a reasonable understanding if the drug works or not with the current injection method. And remember the $50M cash...

https://www.wcvb.com/article/local-company-working-on-treatment-to-reverse-hearing-loss/26596728 Frequency Therapeutics is a Massachusetts company hoping to reverse hearing loss using a cutting edge treatment. We first introduced you to the company almost two years ago as it was developing the...

This was discussed a couple of weeks ago. Frequency Therapeutics has had their current CMO since Spring 2018, so Weber did not leave them recently. http://www.frequencytx.com/news-events/news-events-press-release-04-13-2018.php

Pain Doctors https://www.smartkliniken.eu/om-oss/personal/l%C3%A4kare-3321285

I think it went on from 2016 to 2018 as there were several inections. She is soon finished with the case study paper. No info on the trial. Might be ongoing, might not have started. I would go for a nerve block first. If it has good effect I might ask for botox in the stellate ganglion. I think...

If you speak Dutch and live in the area, maybe this is of interest? https://www.brai3n.com Over at ChatH there is a guy who got a patch on his eardrum from them... He thinks it might be helping

There is a risk... but I the most likely scenario is that you will get better unless you have a another noise accident during recovery. I actually think I have improved in my left (my good ear) somewhat. But my right ear has had more accidents during these 4 months so it is in pretty bad shape.

I might have mentioned this before, but same thing happened to me. Things got better after 4 weeks, started using less and less earplugs, and then... BAM. Now 4 months in this setback, no progress. Constant burning pain in ear and jaw. Don't like have earplugs in 24/7, so I slept with earmuffs...

I had the same thought... We don't want to suddenly experience the setback of our life after the nerve block wears off... On the other hand, if that was the case I think it would have been mentioned. I hope so at least.

Seems to work for acute pain: "For five days after the first stellate ganglion block, the stabbing sensation disappeared. “That night, I noticed people were clanging things and I wasn’t having pain,” says Charlotte. “It was amazing.” " But maybe not for the lingering pain if thats what is meant...

I have exactly the same... a spike since 10 days has irritated my right ear's ear canal combined with the Trigeminal nerve. If i put in an earplug it causes pain in my ear canal and also my cheeks/jaw. After a while I also get some slight spams in my cheek. I hope it will settle down. You have...

I stress at work, but no spike. But after a dinner I enjoyed with friends... why would I get the worst setback ever? I had not exposed myself to that much noise for that long period since I came down with severe hyperacusis. Pretty sure its noise. But who knows? Maybe I'm stressed and don't...