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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...

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...

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...

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...

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...

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...

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....

From the NHS clinical trials website: 4. Sensorineural hearing loss (Pure Tone Average (of thresholds at 250, 500, 1000, 2000 and 4000Hz) >20 and...

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...

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...

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...

Hey rtwombly, I'm a bit confused here. I only saw the response from Autifony (compliments of Chistiaan) on the autifony thread: Here:...

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...

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...

No Thanks. Sometimes i wonder if its bravery or stupidity!! Yes. The days during injections - ears are clogged so quite irritable. Deaf-like. I...

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...

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...

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...

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...

Love the potassium channel glee club and anti epilepticums refs btw :) Sorry to jump in ... just my 2 cents.... Retigabine is a potassium channel...

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...

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...

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...

I think that was Soulstation. His case was rather bizarre around travel arrangements. The post-mortem was "Get everything in writing" before you...

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...

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...

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...

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...

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...

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...

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...

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...

@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...

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....

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....

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...

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...

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...

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...

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...

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...

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...

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...

Interesting: "International Tinnitus Seminar in Berlin, Germany. Anchor- and distribu-tion-based statistical analyses of clinical data support...

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...

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