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  1. Danny Boy

    Audion Therapeutics Trial

    Simply email them or phone them and ask about the dates- For further information, please contact the REGAIN study team: Telephone: 0203 108 9344 Email: ei-regain@ucl.ac.uk
  2. Danny Boy

    Audion Therapeutics Trial

    Someone would need to get on the trial. My hearing loss is mild, so I don't think they'd accept me and I don't need hearing aids. Someone else on here, might be able to, if they don't mention tinnitus or say it doesn't bother them as much as the hearing loss.
  3. Danny Boy

    Audion Therapeutics Trial

    Welcome to the REGAIN Patient Information page! This section is designed for patients who are interested in participating in the REGAIN trial. A drug is in development that may be able to restore hearing loss. The REGAIN study aims to test how safe the drug is and if it affects the ability to...
  4. Danny Boy

    Lipoflavonoid for Tinnitus? Helps or Not?

    Not in the UK. Can't believe they are allowed to advertise something which is at most a placebo effect.
  5. Danny Boy

    Kv3 K+ Currents Contribute to Spike-Timing in Dorsal Cochlear Nucleus Principal Cells

    Neuropharmacology. 2018 May 1;133:319-333. doi: 10.1016/j.neuropharm.2018.02.004. Epub 2018 Feb 5. Kv3 K+ currents contribute to spike-timing in dorsal cochlear nucleus principal cells. Olsen T1, Capurro A1, Pilati N2, Large CH3, Hamann M4. Author information Abstract Exposure to loud sound...
  6. Danny Boy

    Pharmacological Modulation of Kv3.1 Mitigates Auditory Midbrain Temporal Processing Deficits

    Sci Rep. 2017 Dec 13;7(1):17496. doi: 10.1038/s41598-017-17406-x. Pharmacological modulation of Kv3.1 mitigates auditory midbrain temporal processing deficits following auditory nerve damage. Chambers AR1,2, Pilati N3, Balaram P1,4, Large CH3, Kaczmarek LK5, Polley DB6,7. Higher stages of...
  7. Danny Boy

    Retigabine (Trobalt, Potiga) — General Discussion

    They possibly have left over stock. But, only 1,500 people were taking it because of the risks involved. So that's why I'm guessing left over stock.
  8. Danny Boy

    I Probably Will End It All

    It is such a terrible condition and trust me, I've had it seriously bad and had the same dark thoughts as you...But I took trobalt and it worked for tinnitus, lowered it. It's not a safe medication, but there are future analogs based off of trobalt, with hopefully less side-effects. The reason...
  9. Danny Boy

    Retigabine (Trobalt, Potiga) — General Discussion

    I retracted that, as it was temporary. It lowered it however. I still have tinnitus, just not 10/10 with hyperacusis. But as I will say, I got Visual snow from this med, causing me more mental problems...So wouldn't recommend, well it doesn't matter it's been taken off the market. Let's hope the...
  10. Danny Boy

    Retigabine (Trobalt, Potiga) — General Discussion

    I swear I'd be remembered for trobalt forever lol
  11. Danny Boy

    1st Order Pharmaceuticals Inc: 1OP-2198

    This isn't a trial for tinnitus though?
  12. Danny Boy

    Retigabine (Trobalt, Potiga) to Be Discontinued

    I've tried both and it's not like trobalt. Won't give you visual snow though.
  13. Danny Boy

    Struggling Here

    Indeed I do. Sodium Valproate can be useful as it increase GABA in the brain, it also works on the KV2.7 potassium channels and some people have reported a reduction in tinnitus and is a sodium channel blocker and inhibits the re-uptake of GABA by neuronal cells. Gabapentin is unlikely to reduce...
  14. Danny Boy

    Pregabalin (Lyrica)

    That's just to increase GABA in the brain to help with the withdrawal, but lyrica has it own withdrawal symptoms.
  15. Danny Boy

    An ENT Doctor with Tinnitus

    My Doctor told me to wait 3 months to get a referral to an ENT and all they did was give me an hearing test. Wish I got treatment like steroids or carotenoids. Apparently, the audiologist I seen said they'd make no difference. None of them are trained to deal with tinnitus I swear.
  16. Danny Boy

    Pregabalin (Lyrica)

    That's odd because lyrica increased my tinnitus. Well, just watch out wouldn't want you having worse tinnitus. It's great though you're have good results.
  17. Danny Boy

    Can We Fix Our Brain?

    It's the timing of the neurons we need to fix, which is quite difficult at the moment as we have no available potassium channel activator (modulator). If you want to create new new neurons I heard Lion's mane is fantastic at doing just that.
  18. Danny Boy

    Turmeric with Curcumin Seems to Be Helping

    Interesting as I have a post already on this matter. https://www.tinnitustalk.com/threads/turmeric-compound-boosts-regeneration-of-brain-stem-cells.18930/
  19. Danny Boy

    Struggling Here

    Not from what I remember and I was on the highest dose, however lyrica increased my tinnitus
  20. Danny Boy

    Struggling Here

    Gabapentin will help penetrate GABA medication. In my opinion, you have to look at the withdrawal symptoms which include tinnitus.
  21. Danny Boy

    Struggling Here

    I feel really sorry, I take it they did an carotid IMT test too? Yeah, you'd be stuck on blood pressure med from what I'm reading.
  22. Danny Boy

    Struggling Here

    Oh, sorry never read that part. She should go to hospital asap.
  23. Danny Boy

    Brain Regions Responsible for Tinnitus Distress and Loudness: A Resting-State fMRI Study

    Of course more people are getting tinnitus, but there's no awareness of it really. Like on headphones, just says loud volumes may cause hearing loss, should be loud volumes may cause hearing loss and tinnitus. Not too much to ask for.
  24. Danny Boy

    Struggling Here

    I wouldn't have an MRI unless you have a tumor, as it can cause hearing loss, which in turn can worsen tinnitus. I have first hand experience in an MRI worsening my tinnitus. Also, Lipoflavonoid is a scam, doesn't work, if it did we'd all be cured and wouldn't need this forum. Also, stay away...
  25. Danny Boy

    Chinese Herbalist

    I wouldn't fall for snake oil. No herbal treatment has helped with my tinnitus and I've taken a lot of supplements in my lifetime. I wish it could work, but nada.
  26. Danny Boy

    Habituated Once Before, but Trouble Coping with Worsening Symptoms

    First of all, thank you for your service. Right, I see people doing mindfulness as a method of treating of habituation to tinnitus and gaining accepting, I have never tried it myself so cannot comment. There's also the white noise generator route, I know Canada has a universal health service...
  27. Danny Boy

    Tinnitus Research Initiative (TRI) 2018 Conference

    Cheers Steve for doing all this legwork for us, truly a legend. Admire all the work you do for us <3
  28. Danny Boy

    Tinnitus Research Initiative (TRI) 2018 Conference

    Really? Because most GPs in Bath have no clue how to deal or are not educated in tinnitus, maybe she should get them all together and do a lecture.
  29. Danny Boy

    Tinnitus Research Initiative (TRI) 2018 Conference

    If the Prime Minister or Boris Johnson had tinnitus, heck even Jeremy Corbyn you can bet your ass they'd be a substantial funding towards a cure.....
  30. Danny Boy

    Brain Regions Responsible for Tinnitus Distress and Loudness: A Resting-State fMRI Study

    The only thing that truly lowered my tinnitus was trobalt, but it's dangerous and can cause Visual snow. Drug trials take longer than 3 years, even 5 years. If they have an FDA fast track maybe, but I don't see a drug targeted for tinnitus as of yet. Well, AM-101, but that turned out to be a...
  31. Danny Boy

    Brain Regions Responsible for Tinnitus Distress and Loudness: A Resting-State fMRI Study

    Trust me, they say that a cure will be out every 5 years, doesn't happen sadly. It's to instill hope, to those people who have it severe. So they can measure loudness of your tinnitus now? I thought they just normally place a headphone on you with frequencies and once those frequencies surpasses...
  32. Danny Boy

    Announcement Welcoming Glynis as a New Moderator of Tinnitus Talk

    She's such a lovely person and am glad she's a manager now and I'm sure she'll do a fantastic job Best wishes Danny Boy
  33. Danny Boy

    Xenon Pharmaceuticals' XEN1101 — Kv7 Potassium Channel Modulator

    Yes, I understand that... However, I would be willing to do the trial, but honestly, it'll be beneficial if they knew the medication has potential for tinnitus. But with how scattergun trobalt was, I guess it makes it harder to tell which channel worked better for tinnitus. This medication it...
  34. Danny Boy

    Xenon Pharmaceuticals' XEN1101 — Kv7 Potassium Channel Modulator

    Interesting, so there's no exclusion criteria if you have tinnitus?
  35. Danny Boy

    Dublin Tinnitus Trial

    Hm...We'll see the results of the trial and who knows it could work. We won't actually know until some actual clinical results come out. Best to have some hope, at least it keeps us going. If it fails, it fails. If it succeeds, then more investment will come tunneling to tinnitus research...
  36. Danny Boy

    Don't Want to Go Deaf? High Levels of Iron Helps to Prevent Hearing Loss, Study Finds

    Unfortunately, most multi-vitamins aren't absorbed by the body as they aren't that bioavailable. They typically aren't absorbed by the body and most of it is found in your urine (This is why they call Americans urine the most expensive in the world lol). There are supplements which are bound to...
  37. Danny Boy

    Pregabalin (Lyrica)

    What gabapentin? It's quite easy to get, just show them the study on its effects on tinnitus. Also, if you have GAD they'd definitely give it to you off-label.
  38. Danny Boy

    Pregabalin (Lyrica)

    Ah, are you referring to this study? https://www.ncbi.nlm.nih.gov/pubmed/28393057 "Iran J Otorhinolaryngol. 2017 Mar;29(91):95-100. Short-Term Effect of Gabapentin on Subjective Tinnitus in Acoustic Trauma Patients. Goljanian Tabrizi A1, Safavi Naini A1, Baradaran N1. Author information...
  39. Danny Boy

    Pregabalin (Lyrica)

    For trobalt. There isn't really a substitute at the moment, but there are other medications which are targeting the potassium channels, specifically KV7 (KCNQ), unfortunately investment is slow and other conditions are taking precedence over tinnitus.
  40. Danny Boy

    Pregabalin (Lyrica)

    Trobalt doesn't exist anymore. Can't believe you've forgotten about it, it was the talk of the town for so long on here.
  41. Danny Boy

    Pregabalin (Lyrica)

    Lyrica actually made my tinnitus worse, even whilst I was taking trobalt. However, as soon as I changed over to gabapentin+trobalt I had a massive decrease in tinnitus reduction. Also, gabapentin on it's own has been trialled and not been proven to be an effective treatment for tinnitus.
  42. Danny Boy

    Hello, I wouldn't suggest or recommend trobalt to anyone, even if you could obtain it. One of...

    Hello, I wouldn't suggest or recommend trobalt to anyone, even if you could obtain it. One of the more serious side-effects is Visual snow and you honestly, do not want that.
  43. Danny Boy

    Christmas and New Year Wishes

    Thanks @glynis. May 2018 bring you joy and prosperity.
  44. Danny Boy

    Christmas and New Year Wishes

    Happy belated New Year everyone! Hope 2018 is fabulous ^^.
  45. Danny Boy

    Knopp Biosciences

    Trobalt definitely worked, but had an higher affinity towards GABA vs the Potassium channels. Plus the side-effects were extreme! I'd warn anyone off that stuff. If they get Visual Snow, it could be worse than tinnitus. Too risky.
  46. Danny Boy

    Knopp Biosciences

    That's from their website. "ION CHANNEL BIOLOGY Pursuing Novel Drug Treatments Ion channels, proteins that regulate the excitability of cells, represent an important class of drug targets. Drugs that modulate ion channels play an important role in treating a variety of neurological and...
  47. Danny Boy

    Autifony Therapeutics and Boehringer Ingelheim

    Hm, so maybe a combination of KV3.1 and 3.2 could be the answer. Also, I still believe the medication has the potential to treat tinnitus, even through injections. I believe Autifony used a KV3.1 potassium channel and from my reading, both KV3.1 and 3.2 have importance in hyperexcitability in...
  48. Danny Boy

    1st Order Pharmaceuticals Inc: 1OP-2198

    I have no clue, as I couldn't find any information which channels they are going to use. But their original video mentions KV7.2 and 3. Website lists tinnitus, so I would expect this is the channels they are targeting.
  49. Danny Boy

    New Here... Had Tinnitus for 39 Years. My Volume Just Spiked Not Sure Why?

    A hearing test from an ENT won't do much, as there can be hidden hearing loss. Tinnitus has been proven to be hyperactive neurons, from mice tests. We have to restore the timings of the neurons or reduce their excitability. It is a neurological condition which stems from the brain.
  50. Danny Boy

    Levetiracetam (Keppra) Worked for My Hyperacusis

    I was up to 4,000 a day. Side-effects- sleepiness and weakness.
  51. Danny Boy

    It's much milder than before, to the point where I barely hear it. Sadly I have Visual Snow...

    It's much milder than before, to the point where I barely hear it. Sadly I have Visual Snow, from trobalt....
  52. Danny Boy

    Epilim (Sodium Valproate)

    Although the mechanism of action of valproate is not fully understood, traditionally, its anticonvulsant effect has been attributed to the blockade of voltage-dependent sodium channels and increased brain levels of gamma-aminobutyric acid (GABA). The GABAergic effect is also believed to...
  53. Danny Boy

    Retigabine (Trobalt, Potiga) — General Discussion

    I only take it in emergencies.
  54. Danny Boy

    Retigabine (Trobalt, Potiga) — User Experiences

    Progress Report Progress Report Date: Feb 11, 2017 Current Retigabine Dosage: 0-400 Current Side Effects: Visual snow, floaters Current Tinnitus Severity: 2 out of 10 Changes in Tinnitus: I would warn people, that I got Visual snow from this and a few other, so take at your own risk...
  55. Danny Boy

    Retigabine (Trobalt, Potiga) — General Discussion

    I would take trobalt at your own risk, say a last line drug. It caused me to get Visual snow. I thought they were floaters, but sadly they weren't. But my t is low hyperacusis gone, so I guess it was a trade off. Anyway, take at your own risk.
  56. Danny Boy

    The International Tinnitus Journal

    Official Journal of the Neurootological and Equilibriometric Society Official Journal of the Brazil Federal District Otorhinolaryngologist Society http://www.tinnitusjournal.com/
  57. Danny Boy

    Alternative Treatments for Migraines

    Feverfew is fantastic for migraines and been scientifically proven to help. Great stuff.
  58. Danny Boy

    Saffron Cure for Tinnitus?

    For anyone interested in how saffron works, well here it is- "Safranal also attenuated the acute experimental absence seizures which was attributed to modifications of benzodiazepine binding sites of GABAAreceptor complex" "Safranal is an effective anticonvulsant shown to act as an agonist...
  59. Danny Boy

    The Effects of Crocus Sativus and Its Constituents on Nervous System: A Review

    "Safranal also attenuated the acute experimental absence seizures which was attributed to modifications of benzodiazepine binding sites of GABAAreceptor complex" "Safranal is an effective anticonvulsant shown to act as an agonist at GABAA receptors.[1][2] Safranal also exhibits high antioxidant...