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Hey all Apologies for the disappearance. Just moved house and no internet. Tethering at the moment but should be fully back up and running on broadband Weds this week. Currently I am Day 14 after the first injection (Day 1) of the real drug. The weekend was good t wise but unfortunately i...

It was that the question came from OddV asking us about fluctuating t. Then your response was asking him about his fluctuating t. SO i didn't follow. If you were referencing from a previous snippet then ok, my apologies. re the trial centers - yes, it seems very cold when suffering people get...

Were you able to ask Dr. Jeanmonod any of our questions re Retigabine?

You'll have to scroll back in the posts to see benyru. He has a firm grasp on the science of Kv and glutamate. The guy is taking time out so we don't get his informed posts anymore. However, from what I have gleaned from reading about Kv channels, trobalt affects the inter-spike interval mainly...

Agreed. However, the cost of an MRI is significantly less. Reel back to the earlier posts on state subsidized treatments and i get it. I just don't have that non-subsidized money to spend on a potential no-go and be told my t is emotional, which would have cost me 1 or 2% that amount. But like i...

I never said my T was fluctuating. My t is very loud after the injections. After injection day 1 - 8/10 After injection day 2 - 9/10 After injection day 3 - 10/10 day 4 - 9/10 will report day 5 tomm I don't think you can make that conclusion. I said above i popped my ears during the placebo...

Hey Danny Boy. Autifony targets Kv3 and Retigabine Kv7 so they are not the same drug. They just both potentially have the ability to kick open the potassium channel gates. We don't really know what is inside AUT00063 so we are really all just guessing. They do aim to trial 63 for both tinnitus...

I'm no expert so don't take my word for it. My understanding is that Autifony is not regenerative medicine. So it is not regenerating hair cells. My guess is that they believe Kv channels play a role in hearing loss too. But i could be wrong.

From the NHS clinical trials website: 4. Sensorineural hearing loss (Pure Tone Average (of thresholds at 250, 500, 1000, 2000 and 4000Hz) >20 and <60 dB Hearing Loss (HL)); If a hearing aid or sound generator user, then confirmed consistent daily usage of the device over past 6 months; However...

yes - that is exactly what they think. This drug is also targeting hearing loss.

It's difficult to say exactly. Last time, by mistake, i held my nose and popped my ears to get rid of the blocked deaf feeling. The ENT said i should not have done that because it delays the healing process of the hole in the eardrum. By blowing it, you are effectively, opening the hole again...

Thanks for your detailed report. I don't have that kind of money to gamble with on a maybe. I'm glad you felt it was worth while. That is what counts. Apologies, the reason I say this is because the 2200CHF is non refundable. Is that correct?

Are you managing to concentrate (now that you have t) at work being a software developer for a bank?

Thanks Christian. Yes, that was the same one i read. I still don't know what rtwombly was on about then, re hearing loss. There is no mention in the reply you got back from Autifony re hearing loss. No new info re hearing loss, other than what we already know. rtwombly - can you explain what...

Hey rtwombly, I'm a bit confused here. I only saw the response from Autifony (compliments of Chistiaan) on the autifony thread: Here: https://www.tinnitustalk.com/posts/74754/ Did a search and can't find anything on this Retig thread. Was it removed? I'm just very keen to see what additional...

Thanks OddV. Yup. Home safely after a long 3 day hospital stint. Day 3 was another "sweaty palm" session. I did load up on ibuprofen, paracetamol and codeine beforehand. So this time round, injections were definitely less painful. Plus, the ENT injected into the bottom part of the eardrum. First...

It's like Charlie and the Chocolate Factory and see who is going to get a golden ticket!

At last we are getting some numbers. Add 1 month for the drug dosing. Add some more months to analyse data and post the results. Maybe 1 year minimum b4 we see if 063 is effective?? I am glad to see they did no hammer home the hearing loss requirement. Perhaps they will relax that. I think this...

No Thanks. Sometimes i wonder if its bravery or stupidity!! Yes. The days during injections - ears are clogged so quite irritable. Deaf-like. I try to remain calm but it is a challenge. All depends on personal circumstance tho. I am feeling very unsettled at the mo in general so i think i'm...

Hey Danny Boy. Would you are to expand on how you got your hands on some? Otherwise i'll PM you if you don't want to say.

Yes. T in both ears then get injection in each. No i wouldn't say that. They did trials < 3 months and results were ok. Now they want to see if they get people in the 3 to 12 month range get a reduction in t after am101. It's a bus and train ride away. About a 1 - 2 hr journey. Staying in a...

Hey amandine, Initial interview: 1 day - they give you the cellphone plus do loads of tests and you have to make sure you complete it every night (at least 80% of the time otherwise DQ). +-14 days later - more tests in the morning. You hear that same day if you made it through the morning...

So yesterday was day 1 of injections (2nd set - real drug) of AMPACT2. Because I knew how painful it was going to be (from last time), i was pretty stressed. By 4pm i was sweating and seriously thinking of pulling out. However, having made such a commitment, i decided to go through with it...

My injections (2nd set - real drug) are at 16h30 UK time today. Both ears. Day 1. Day 2 and 3, Weds and Thurs. Will keep you all posted.

That is really great @Matt h. I go for my 2nd set of injections tomorrow so you have really given me hope. I have had almost no improvement in my t from my first set of injections. There was a point at maybe 4 / 5 weeks that i had a "quiet" week but it is back up now, averaging 7's, 8's and 9's...

Love the potassium channel glee club and anti epilepticums refs btw :) Sorry to jump in ... just my 2 cents.... Retigabine is a potassium channel opener and prescribed as an anti epileptic. What muscle relaxants / anti epilepticums do you recommend? I have some a "clicky neck". In fact I am...

I can relate. Me too. Any connection between floaters and t? Doubt it. Just thought that was co-inkey-dink. lol. It does make things seem 10 times worse tho, that your body is well and truly packing up on you. I feel about 80 with all the complications t has caused! Not that rare. Me too!! The...

Most probably. Given my situation yes. Ask me again in a months time after my 2nd set of injections. If it makes it worse, then obviously no. So far - after 1st set - no improvement - no change.

I am in the UK, as per my profile. See Location under my thumbnail pic. At the time, after reading all am101 info, my take was that the results were fairly +ve (in my mind, not in stats terms) from the Phase 2 results. Some people had improved from the drug. The results and numbers were not...

I think that was Soulstation. His case was rather bizarre around travel arrangements. The post-mortem was "Get everything in writing" before you make the long journey. So if the trial doctor says its ok to take a taxi home to your bnb after the injections, then get it in writing, including...

Hi amandine. When i made the decision to take part, I asked around on the forum as well as looked at the phase 2 results. I saw that people spiked immed after having the injections. But it came down in time. This is the first time I have heard of someone who's t has increased with Mikey Cliff...

Hey Mikey Cliff. That is awful. So sorry to hear it is worse. I can relate to a career being trashed because of t. And a career in music too. I used to play part-time. Have had to give it up. If you don't mind me asking how did you get T? Was it from drumming? You said you wore ear plugs. You...

Great to hear. I thought you said in a previous post that you had heard that it was different in different centers. I am glad that you have confirmed this is not the case. Remuneration should be consistent across all centers. Good luck!

Yes - i did mine in the UK. They might have different setups re the finances at each hospital. Like i said, best speak to the trial co-coordinator about how much they will re-reimburse you. It is possible that they do it on a case by case basis. My trial co-coordinator had motivate that they...

Do you have the link? I don't see anywhere on their website that references oct 27?

It normally has to be motivated by the trial co-ordinator but you can get them to pay up to £60 per night for accommodation. Just clear it with him/her first. The first set of injections are 3 days, so they will normally cover 2 nights. They expect you to return home the night of day 3...

NHS site has this title for the trial: A clinical study to demonstrate an improvement in tinnitus severity after 28 days dosing of the study drug AUT00063 compared to placebo, in participants with subjective tinnitus. So i think it is for 4 weeks of dosing. Also. if you see the link to the...

The idea that your life will just go back to normal seems far off for me right now and I am almost 11.5 months into t. Each day is a struggle. I have had to give up playing live music. I have had to give up my demanding job because I can't sleep or concentrate anymore. My life has done a 180 for...

Hi @Carloflogical. You may be the only one on this board that qualifies! Excellent to have you aboard. If you don't mind me asking, does your hearing loss fit this criteria: 4. Sensorineural hearing loss (Pure Tone Average (of thresholds at 250, 500, 1000, 2000 and 4000Hz) >20 and <60 dB...

@Cor. Thanks for the update. I admire your "just do it" attitude and has to be commended. Dealing with this t on a daily basis is no joke. Are you planning to try Retigabine?

That was pretty much my experience of the screening test as well. After the injections, once per day you answer 2 questions on the HTC phone. Tinnitus loudness and tinnitus annoyance on a scale of 1-10. I go for the AMPACT2 open-trial follow-up (real drug) on the 4th Nov. As per the snippet...

Sorry to hear that happened. I hope that the tremor will dissapear in time.

Agreed. I go for the AMPACT2 follow-up injections (real drug) on 4th Nov. If they don't work then I will start looking at getting Retigabine. Getting a prescription looks like a serious bottleneck. I think it is going to be a case of having enough evidence to hand to a GP to refer to a...

I can relate. Thanks for your post. I've also lost my job due to tinnitus and my inability to focus or concentrate anymore. I took the opportunity to do am101 (which i am grateful for, as i know a lot of people don't even have the chance of getting on). Unfortunately there has been no...

As i said above - to be sure - ask the trial co-ordinator. They will know what is on the DQ list and what isn't.

Hey Danny Boy. Sorry to hear that. You are not the first on this thread to hit a brick wall trying to get Retigabine from a doctor. What i don't get, is it is developed here! It comes down to having a valid prescription and getting an understanding doctor. In your case, sadly, not. Are you able...

Check with the ent doctor that will be injecting you, or better still with the trial co-ordinator. They know all the exclusion criteria. They can check with Auris for you if they don't know. I had to come off anti-depressant SNRI. I was also on another scheduled prescription med (for pain...

Me too. His response: I have seen over 400 cases and the response rate is in the order of 60%, the max number of visits is three and if you don't respond in that time, then there is little point is pursuing more visits. Will it work for you? I can't tell What do I like is the case history...

Are you planning on a visit and do you think it could work?

I wonder if this would work for noise induced T ? This ladies T came from infection: "Angela developed tinnitus after suffering a series of infections in her left ear when she was in her late 40s."

They screen for any street drugs and you can't be on anti-depressants.

Yes - by email or by phone in the UK.

It is 40% placebo, 60% am101. Says so in my consent form.

I am on the trial for 3 to 12 months and can say this. 1. As long as they can mask your tinnitus at a low enough and high enough level then you tick that box in the screening process tests. So a 10% tinnitus would probably only need a masking tone of 5 decibels which is too low. But a 100%...

Yes. Check back in the thread somehere where some guys talk about taking along accompanying documentation to motivate your request. I know it is a big thread so maybe do a search on "prescription" or something. Let me know if you manage to get it on prescription here in the UK.

Yes, i'm in the same boat. Which doctor did you ask if you don't mind me asking? I didn't think Quiet-1 trials were open just yet.

Autifony has a broadband hearing loss eligibility component that DQ's most ppl, even if living in the uk. I would say apply for AM101 and Autifony when it opens. Aut would be number 1 to get on and def apply. However if early t, then am101 could bring it down a few notches and worth the pain...

Interesting: "International Tinnitus Seminar in Berlin, Germany. Anchor- and distribu-tion-based statistical analyses of clinical data support the use of a 2 point reduction on a 0-10 numerical rating scale as a responder definition." So only a 2 point reduction. But if it takes it from a 6 to...

It may depend on the hospital you go to but for me, they re-imbursed travel up to a maximum of £35 per one way trip (£70 round trip) and up to £60per night at a bnb. The first set of injections is over 3 days so you need to book 3 nights accommodation and get there and back eg: train. Just...

Serc is mainly for vertigo/dizziness but what do i know.