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  1. tomm

    [Danny Boy Memorial Fund] In Loving Memory of Danny Boy

    Logged in to pay my respects. Danny Boy and I got our tinnitus very close together and arrived on the board at the same time. When I was really down he offered a meetup so we could both have a good rage at our misfortune together. That support struck me as a really kind thing to do and I've not...
  2. tomm

    Audion Therapeutics Trial

    Regain trial has opened in UK. Attached is the clinical trial patient sheet.
  3. tomm

    Awareness Idea for Patient Research: Join the Dots

    I initially collected a list of everything that had even the slightest whiff of being able to help: https://github.com/aioue/tinnitus-treatments/blob/master/to-be-sorted.md I attempted to start putting it into a mindmap and it's now left unfinished...
  4. tomm

    Autifony Phase II Trial Participants Experiences

    Finished my 29 days of AUT00063 on the 4th of August 2015 (3 days ago). I had the quietest days of T since it started in this last month. Also some of the loudest. dB requirement is now 25 rather than 40 at the hospital I was at (Royal Ear Nose and Throat, London, UK). My left ear passed, my...
  5. tomm

    AM-101 Clinical Trial — Participants Updates and Discussion

    I was eating very large quantities of vit-D3 for 3 months. Didn't do much, although I know nerves take time to grow.
  6. tomm

    AM-101 Clinical Trial — Participants Updates and Discussion

    @Romain B. Spike for 2 weeks, then moderately quieter than before. I'll be doing all three further rounds.
  7. tomm

    Waking Up With Absolutely Stupid Tinnitus

    Hey RichL, that's a very clear response. Did you ever listen to Kodomo, Concept 1?
  8. tomm

    Communal Treatment List

    Separate from staff, I want to point out this is all cursory data. There are no answers here. This will be updated by me and anyone helping (it's free to anyone globally, forever) probably once a month for the next year, but it is a set of ideas we need to poke holes in. If you have tried...
  9. tomm

    Auris Medical to Host Key Opinion Leader Meeting on Tinnitus Treatments on March 13

    Fantastic link @grandfunk1 . Michael D. Siedman, who is speaking a third into the youtube link is really inspiring. He starts here. He covers some interesting points 10 mins later. He's looking to reduce harm - he's done brain implants that haven't worked, but some that have. He's involved...
  10. tomm

    Waking Up With Absolutely Stupid Tinnitus

    Yep, definitely a big part is sensation rather than sound. Doesn't go off like yours though I think. I'm at a 3-4 most days at work now, probably mostly from habituation. When I get up it's an easy 6. I look really miserable first thing in the mornings now, rather than just normal morning...
  11. tomm

    Waking Up With Absolutely Stupid Tinnitus

    Worst when I get up out of bed, not straight away after becoming conscious - just have to power through the morning routine. Fades to normal over about an hour.
  12. tomm

    First Human Head Transplant by 2017

    Imagined a horrendous image of the neck scar after having a head transplant, bleugh! :eek: Nerves and blood vessels don't just connect up magically (as we know!), I can't imagine how that problem will be solved without science fiction nanobots fixing everything up - by which point transplants...
  13. tomm

    Communal Treatment List

    That's a very good point guys, I'll see if I can find a way to show how strong the evidence for something or whether it's weaker or anecdotally associated with tinnitus. (y)
  14. tomm

    Communal Treatment List

    Hello all, I have a big notebook full of tinnitus treatments (surgical, medicines, supplements) that I've picked up on my travels around the web that are slowly being formalised and would like to invite people to add to. It's public and published in an open 'mind map' format that anyone...
  15. tomm

    Huperzine A and Rose OX — Are These Bad for Tinnitus?

    That very broad statement is untrue, bordering on dangerous. Just because it's 'herbal' doesn't mean it's automatically safe, and just because it's man-made doesn't mean it's automatically unsafe.
  16. tomm

    Slamming Car Door Seems to Have Made It Louder?

    Hi @geg1992, We all get spikes from loud noises occasionally - if you're out and about and getting on they are pretty much unavoidable over a long length of time. Don't worry about the spike, it'll settle without you noticing given time. Maybe slap some earplugs in an help with the washing up...
  17. tomm

    Background Sounds in the Forefront

    Hearing loss, even hearing loss that you don't notice causes your brain to have difficulty picking out speech and useful sounds from background noise. You'll probably perceive this as background noise being louder or more intrusive than before, because for all intents and purposes, it is.
  18. tomm

    AM-101 Clinical Trial — Participants Updates and Discussion

    Please keep the thread to constructive questions and answers. Since my second round of injections I experienced a week long spike, then a reduction in tinnitus intrusiveness. The volume between ears is no longer the same, the right ear has gone down more than the left. So far, a positive response.
  19. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    The LD50 for benzodiazepines is pretty high. That doesn't mean you should push it though. Please keep the topic on track.
  20. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    Using this info I've now contacted them and re-booked for April. Fingers crossed I should get on with the relaxed requirements. Thanks for keeping us up-to-date @2131e :)
  21. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    $461,925 at the current exchange rate. You could buy an average 2-bed detached house in the South of the UK for that. Nothing On the upside, your hearing is first rate :) I'm due to visit on the 17th of Feb. Wonder if it's not worth postponing till the new trial...
  22. tomm

    AM-101 Clinical Trial — Participants Updates and Discussion

    Would you mind adding the cause for your T to your profile please sergerold? Thank you! https://www.tinnitustalk.com/account/personal-details
  23. tomm

    CIMETIDINE Rx for My Toddler?

    Is it to stop the itching? There don't seem to actually be any treatments for the illness beyond not scratching and letting it resolve. If that's the case you could ask your doctor for an alternative anti-histamine.
  24. tomm

    CIMETIDINE Rx for My Toddler?

    Hi Jay M, What's the prescription meant to target? There are plenty of OTC allergy meds to choose from.
  25. tomm

    AM-101 Clinical Trial — Participants Updates and Discussion

    Second day of second (real) round of injections. Had a headache for a few hours during the night after the first injection yesterday. T was louder this morning and all today. Increase not enough for me to bail given the chance it might get softer.
  26. tomm

    I'm Losing My Battle...

    Geo, get out of the house. Take earplugs or some headphones with nature noise and just go for a walk to your friends house. Sit outside in the quiet a shoot the breeze. Have a few beers. After four months of solid sound and bouncing off the walls at home, what caused me to have moments where I...
  27. tomm

    In Defence of the P-value: Understanding Trial Results

    https://scientistseessquirrel.wordpress.com/2015/02/09/in-defence-of-the-p-value/ (graphic by Chen-Pan Liao via wikimedia.org) The P-value (and by extension, the entire enterprise of hypothesis-testing in statistics) has been under assault lately. John Ioannadis’ famous “Why most published...
  28. tomm

    Retigabine (Trobalt, Potiga) — General Discussion

    I had a BUN test done before ret and about 2-3 weeks in. My values didn't change.
  29. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    If you can measure the results using a machine, you don't need to rely on the unreliable values people give. 1 person's 6 is another person's 10 etc. If the signal went down 20% as measured by a machine you have reliable indicator of just how much effect you're having, and if you can...
  30. tomm

    Tinnitus from Phenibut/Kratom Use

    That's great seren607, you sound a lot better than you did in December! Glad you're sleeping well as well - wouldn't be surprised if the healthy eating and exercise is actually giving you a better night's sleep than you were having originally :) You've made some really good changes, so keep...
  31. tomm

    Asthma Medication and Tinnitus?

    I've taken salbutamol and salmeterol (beta2 adrenergic receptor agonists), fluticasone and beclometasone (steroids inhalers) for two decades. I only take the beta2 agonists since about 4 years ago. Neither affect my T. Steroid meds are unlikely to affect your T. Uncontrolled asthma can directly...
  32. tomm

    Retigabine (Trobalt, Potiga) — User Experiences

    Progress Report Progress Report Date: Jan 16, 2015 Current Retigabine Dosage: Single 200mg dose on 8th Jan to test 'painkiller' theory. No regular doses since Dec 30th 2014 Current Side Effects: Retigabine has had no subjectively lasting negative effects. Current Tinnitus Severity: 5 out...
  33. tomm

    Benzos and Tinnitus

    This is important. Diazepam has a half life of "20–100 hours (36–200 hours for main active metabolite)". Alprazolam "Immediate release: 11.2 hours. Extended release: 10.7–15.8 hours". Your body will have much more time to adjust to diazepam leaving your system. As an aside, please could you...
  34. tomm

    Spell check

    Quite a lot of browsers have it inbuilt now. I'm running Google Chrome and it underlines any spelling mistakes in red. If you right click the word it will offer suggestions.
  35. tomm

    Retigabine (Trobalt, Potiga) — General Discussion

    Regarding sounds overnight, I tried ARCN twice while sleeping. It helped if I had it on for an hour while awake, but after my overnight sessions, both times it caused me to wake up with a loud spike that went away after about an hour. Don't know why that would happen but I've gone back to fans...
  36. tomm

    Changing Tinnitus?

    Hey 2131e, You profile doesn't list a cause for your T and the since date is 19/2014 - is that the first of September last year? If that's the onset it's probably still settling. Have you changed your diet or sleeping patterns? Been more relaxed?
  37. tomm

    Benzos and Tinnitus

    Over the past week or two, I've occasionally had 1mg of the benzodiazepine 'diazepam' (valium) and a few beers before bed. The following day my T is normally easier to deal with and with none of the insensibility that retigabine gave me. It's less than ideal taking benzos forever - but the...
  38. tomm

    Famous YouTube Rapper Dan Bull Reaches Out to Fans

    No tinnitus, just hyperacusis plus the other symptoms mentioned above.
  39. tomm

    Low-Level Laser Therapy (LLLT) for Tinnitus — Experiences (Dr. Wilden, etc.)

    That looks good. Pleased we have some engineers who know what they are talking about!
  40. tomm

    Working Out and Its Effect on Tinnitus

    I'd say the health rewards and happy endorphin feelings completely outweigh the light spikes you occasionally get from workouts. Exercise will lower your blood pressure! Keeping exercising, keep active, take earplugs :)
  41. tomm

    Famous YouTube Rapper Dan Bull Reaches Out to Fans

    Top YouTuber Dan Bull, famous for excellent gaming rap comedy videos has reached out to his three-quarters-of-a-million fans for help with hyperacusis, tensor tympani syndrome (TTS), temporomandibular joint disorder (TMJ) and eustachian tube disorder that is harming his music and video...
  42. tomm

    Steroids: Prednisone / Dexamethasone / Others (Oral and Intratympanic Injections)

    Prednisone is very strong - the side effects are broad and powerful. One of the few things that it pretty important to have a doctor's oversight on. Stay safe.
  43. tomm

    Retigabine (Trobalt, Potiga) — General Discussion

    Thanks to helpful members on the board, there is now another potential option for UK residents seeking retigabine. For those struggling to get a UK prescription, Mark Weatherall at the London Headache Centre is accepting NHS referrals as a Neurologist. If you go private you may be able to get...
  44. tomm

    AM-101 TACTT1 Results Released

    You're a researcher, you've seen the phase I results and the limited anecdotal evidence on these forums so you know the what the probabilities look like. When I spoke to the study lead at Guy's Hospital, Mr Obholzer, during my last followup I asked how much of the drop in loudness could be...
  45. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    Well that's very interesting. Do you have any hearing loss at all? Maybe a recent audiogram?
  46. tomm

    Scam?: Bioenergy

    I signed up for hearing loss and T but accidentally put a typo in my address. My neighbour can now hear me cough through 3ft of brick wall.
  47. tomm

    Low-Level Laser Therapy (LLLT) for Tinnitus — Experiences (Dr. Wilden, etc.)

    Anyone who's going, get an independent audiogram (up to high 16-20kHz if possible) before you go, and when you are done. By independent, I mean not the person who is doing the treatment.
  48. tomm

    Low-Level Laser Therapy (LLLT) for Tinnitus — Experiences (Dr. Wilden, etc.)

    I emailed the company selling the full unit - they said the lens on the front could be removed which I'm guessing would widen the beam a little. Tempted to try it - do we think 650nm is a decent starting point?
  49. tomm

    Hi Anny. I'll message you the contact I had separately.

    Hi Anny. I'll message you the contact I had separately.
  50. tomm

    Low-Level Laser Therapy (LLLT) for Tinnitus — Experiences (Dr. Wilden, etc.)

    It's the beam focus doing that. The ones in the photos from Anne etc all have a wide spot. That's the only difference.
  51. tomm

    Low-Level Laser Therapy (LLLT) for Tinnitus — Experiences (Dr. Wilden, etc.)

    You can buy a 650nm 150mW laser diode for about $40. A full unit costs $105. I can't a good reason why I couldn't purchase the full unit, take the collimator and focussing components out of the front so it's defocussed and doesn't burn a hole through my head, and hold it up to my ear for a...
  52. tomm

    The Gastrointestinal Tinnitus Connection

    If you think there's a GI connection to your T, you might consider fasting. The 5:2 diet fast has received a lot of attention recently, and the BBC Horizon video from 2012 with my favourite Doc Michael Mosley about the subject was fascinating.
  53. tomm

    Inner Ear Hair Cell Regeneration — Maybe We Can Know More

    Really keen to know if our idea that regenerating hearing will fix existing T is correct.
  54. tomm

    Retigabine (Trobalt, Potiga) — General Discussion

    Interesting you mention that, I've been off retigabine for getting on for a fortnight and had a progressively worse day today to the point where it was screaming when I left work. I came in and immediately ate dinner and afterwards had 200mg to try and get a hold of it. That was about 2 and a...
  55. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    Confirmation of the hearing loss requirement. "The trial requires a participant to have an average hearing loss of 20-60db across the frequencies between 250Hz and 4000Hz." If your audiogram is perfect at those low frequencies, you'll have to hold on.
  56. tomm

    What Works for Sound Sensitivity/Acoustic Trauma from Loud Music?

    My bad hyperacusis lasted just over 2 months after noise trauma. It's dropped down to only hurting when there are loud plates or road noise etc. Retigabine caused it to go away very quickly.
  57. tomm

    Will My Tinnitus Get Better With Time?

    Hi Aeryes, You're doing the right things. Eating well and exercising will help your body repair itself and keep you healthy and happy to boot. Protecting your ears is very sensible too. Being tired or stressed can aggravate T and colds are notorious for making you feel worse. Hang in there...
  58. tomm

    Autifony Therapeutics Phase II Study for AUT00063, for the Treatment of Hearing Loss and Tinnitus

    UCL came back to me. UK people can call Nottingham for a telephone pre-screening, prior to a GP referral and proper screening. As far as I can tell, Nottingham can screen you for all UK sites and then tell you who to contact closest to you. Call 0115 823 2600 between 1000 and 1500. Ask to...
  59. tomm

    Researchers Discover an "Off Switch" For Pain In the Brain

    Some academics think tinnitus is similar in nature to phantom limb pain. Stop the 'pain' and your T goes away.
  60. tomm

    Retigabine (Trobalt, Potiga) — Petition to the ATA

    Has the paper mentioned by the researcher been published yet ATEOS? How is the project progressing?