SoulStation
Member
I would hold strong. I've had up and down days but over all my T has definitely been attenuated with Potiga . it just only works when its concentrated in your blood.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Maybe my spike is related to my poking my inflamed tooth root which I did about the same time I started taking retigabine.
MemberCould it also be possible that the inflamation in the tooth itself is the cause, and not just only the poking? Tooth problems can sometimes be very connected to the ears and hearing.
Johno
Member
- Jan 8, 2014
- 231
- Tinnitus Since
- 6/07/2012
- Cause of Tinnitus
- acoustic trauma
Yes it can but my tinnitus was immediately after a headphones with loud music event and that inflammation was present before it but did not seem problematic enough for me to consider going to dentist about it.
@Hengist, i would advise you to get that tooth removed as fast as possible. I had a lot of trouble with an infected wisdom tooth during this summer, i waited far to long to get it out and T was blazing. 2 weeks have passed since the extraction and T is not quiet but a lot calmer and more stable than it was during the inflammation. My T was from a acoustic trauma 6 months ago. You have nothing to gain from waiting.
I also had an 8th tooth removed and that seems to have calmed my tinnitus by maybe 20% but I have a lot of f***** up teeth and I do not plan to crank away half my mouth, especially teeth that are in front. I do not have the resources to replace those teeth with those things celebrities put in their mouths.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
It goes better sometimes, some worse, but tolerable. Depends also on food, how much time i spent in city. so noise. anyway it seems autifony gave some news, trial will last 1 month.
This drug is so related to retigabine, like brother and sister, so :
Tinnitus Study - Information
Q. What is the QUIET-1 study?
A. The QUIET-1 study is a clinical study to determine whether or not a new test drug, AUT00063, can reduce symptoms of tinnitus in comparison to a placebo (dummy drug) after 4 weeks of treatment
Q. How do I know whether or not I am eligible to take part in the QUIET-1 study?
A. If you are ≥ 18 years old and have had continual tinnitus for more than 6 months but less than 18 months, and are otherwise healthy, you may be eligible to take part. Screening will be required to make sure that you meet certain eligibility criteria and the final decision on study enrolment will be taken by the trial doctor
Q. Who should I contact to find out more about enrolment in the QUIET-1 study?
A. The QUIET-1 study will be conducted at a number of sites in the UK. More information on these sites will be made available shortly, along with a contact telephone number for more details. This website will be updated periodically to list specific sites that are involved in the study
Q. Will this drug adversely affect my hearing?
A. AUT00063 has completed initial "Phase I" safety studies in healthy volunteers. No adverse effects of the drug on measures of hearing were observed in any of the subjects.
Q. What are the side effects of AUT00063?
A. AUT00063 has completed initial "Phase I" safety studies in healthy volunteers. The drug was very well tolerated in young and older healthy volunteers. No serious adverse effects were noted during the Phase I trial.
Q. How will AUT00063 be administered during the trial?
A. AUT00063 is an orally active preparation that will be taken as 4 capsules once daily with food, for a period of 4 weeks.
More information on these sites will be made available shortly, along with a contact telephone number for more details.
This drug is so related to retigabine, like brother and sister, so :
Tinnitus Study - Information
Q. What is the QUIET-1 study?
A. The QUIET-1 study is a clinical study to determine whether or not a new test drug, AUT00063, can reduce symptoms of tinnitus in comparison to a placebo (dummy drug) after 4 weeks of treatment
Q. How do I know whether or not I am eligible to take part in the QUIET-1 study?
A. If you are ≥ 18 years old and have had continual tinnitus for more than 6 months but less than 18 months, and are otherwise healthy, you may be eligible to take part. Screening will be required to make sure that you meet certain eligibility criteria and the final decision on study enrolment will be taken by the trial doctor
Q. Who should I contact to find out more about enrolment in the QUIET-1 study?
A. The QUIET-1 study will be conducted at a number of sites in the UK. More information on these sites will be made available shortly, along with a contact telephone number for more details. This website will be updated periodically to list specific sites that are involved in the study
Q. Will this drug adversely affect my hearing?
A. AUT00063 has completed initial "Phase I" safety studies in healthy volunteers. No adverse effects of the drug on measures of hearing were observed in any of the subjects.
Q. What are the side effects of AUT00063?
A. AUT00063 has completed initial "Phase I" safety studies in healthy volunteers. The drug was very well tolerated in young and older healthy volunteers. No serious adverse effects were noted during the Phase I trial.
Q. How will AUT00063 be administered during the trial?
A. AUT00063 is an orally active preparation that will be taken as 4 capsules once daily with food, for a period of 4 weeks.
More information on these sites will be made available shortly, along with a contact telephone number for more details.
so there is going to be no trials for AUTooo63 in US? that sucks cause i dont want to go over 18 months of tinnitus by the time they take the trials into the US
theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
Wow that's really good info. Considering I'm at 4 months now I might consider signing up. I was considering trying to get Trobalt but I've yet to speak to a doctor about it. Since I'm still in the acute stages of T I'm really considering trying to get it. The only issue will be getting confirmation from my doctor.
theekarwash
Member
- Jun 22, 2014
- 158
- Tinnitus Since
- 05/2014
- Cause of Tinnitus
- Noise and/or Ear Infeciton
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
There should have been trial fro Autifony company in USA and they canceled it (It was for hearing disorder loss). Anyway honestly to say I don't believe they will something, there will be just few places for people for people who dont live in UK, those places will accept non-UK nationals, as you see trial last 1 month (if you read). So @Eric Fridley and theekarwash you in same situation, there will be few places for non-UK national, and I believe it is just to say they took outsider, symbolic numbers. And second, I don't know but enlighten me why do they have to at all do any trials in USA? I believe at this point retigabine can do a wonder for you.You wanna trie some medicine to see will it work for month (they don't cure you but give you pill to record efficency and you might get empty pill (placebo too 50% chance!).
On the end:
1. You run there and try to get in, with symbolic number of foreigners
2. You don't use Retigabine in hope that you will get in but you lose chance to stop you brains plasticity and stop your brain to develop pathways for t ringing and T establish itself in your brain to sound better possibly louder. (can happen)
3. You get in and be tested with autifony and he show it works you on (very small chance!!!) and end trial and get your t back and go home
4. You don't who knows how much time and months and years for Autifony to come out. So you come back home and sit and wait it.
Arguments please!
i have t 12 months, I am perfect individual to apply from Sweden, I will not apply. And I hope people who wave several years t whose brain is established will not too because brain s plasticity in their case is much more established and I suppose they will need longer time to get good effects in so little time, so please don't ruin trial and our chance to get medicine, dont go there saying i have 12 months with forged paper ruin trial and we all lose medicine, and wait who know how much more time. Play fair, please.
yea but idk if my GP will give me Retigabine i have not talked to him about it and he doesnt even know about aut00063 or am-101 trials so im sure he wouldnt know anything about Retigabine, Trobalt
SteveToHeal
Member
Hey Christian,
I hope you are doing well and that you are still getting success on Retigabine!
Nothing is known re Autifony just yet. So the symbolic foreigners rule is only your assumption at this point. Plus we don't know for sure re the plasticity re T. It's just a theory. Plasticity does however make sense to me too, so I am hoping that this model is solid because the they can then develop drugs around it. However we have no proof at the moment how AUT will work. T might dissapear for good after taking it for just 4 weeks. We just don't know yet.
So best to not make assumptions at this point. I would still try and get on this trial over trying Retigabine just because of the reported side effects. I know you are on Retigabine and I commend you for trying it. However, I would not dissuade anyone from trying to get on the AUT trial.
The placebo is an obvious risk and you could receive it. However, if it is anything like am101, then you will have the opportunity to take part in a follow up trial where they give you the real drug. Again, i don't know that for sure. So best not to assume one way or another until they release more info. I must say, if they did not have a follow up study (real drug) for participants, that would make me think twice about applying
However, it's a 60/40 (if the same as am101) gamble in your favor of receiving it, even if they don't offer a follow up trial. Again, more assumptions here re the percentage split so don't take any of this info I say as gospel. Best wait for the real info.
And if it does work the way you say (come home after a month of it working or not), you always have the option to try Retigabine, if you can get your hands on it !
Re the "12 months with forged paper ruin trial", hopefully the majority will be in the "more than 6 months but less than 18 months" category. A few forgers in the group would be a negligble distortion but I agree, it's best people fit the criteria so as to allow the trial to report correct data.
Good luck all!
this is interesting and good news regarding autifony trial
firstly its a SHORT 4 week trial, not something dragging for months
secondly they expect 000063 to work quite fast, not months like some thought
thirdly it gives us a better idea on how to dose retigabine once we know the trial dosage
fourthly, this means that 0063 could be fast-tracked on early access scheme sooner than we thought
all in all good news
thank you to everybody trialling retigabine and good luck!
firstly its a SHORT 4 week trial, not something dragging for months
secondly they expect 000063 to work quite fast, not months like some thought
thirdly it gives us a better idea on how to dose retigabine once we know the trial dosage
fourthly, this means that 0063 could be fast-tracked on early access scheme sooner than we thought
all in all good news
thank you to everybody trialling retigabine and good luck!
I'm still sceptic to that short time frame though. But then again, the people at Autifony knows much more about their drug than any of us do so I guess we just have to trust them knowing what they're doing.
How do you mean? They have some similar properties but are still two different drugs. I don't think we can compare them that way.
It was not rats in phase 1. It was healthy humans i.e humans without T. The rats was in the pre-clinical trial.
@Christian78, it's good to hear you take this position even after your various setbacks with retigabine. I take this to mean it is still a good experience for you.
I still feel we do not have sufficient detail on the Autifony trial to make a determination. For instance, if a non-UK resident wanted to participate, would they need to relocate to the UK for the full month, making multiple hospital visits, or would they be provided with the medicine and expected to check back in only at the end of the month? That's double the traveling expense, so still a show-stopper for me, but perhaps more attractive to Europeans. We should have those details fairly soon.
As Zimichael said, there may be a provision to re-try patients who received placebo with the real medicine. It would make a big difference if that was factually stated and details on how to obtain the supply were provided. It would also make a big difference if somebody at Autifony said, "We expect AUT00063 to be permanently effective within the trial period (4 weeks)." From Benryu's explanations and Mpt's posted experiences so far, I believe this may well be the case, but it's all speculation at this point. Unfortunately it does seem likely we'll hear such a statement, as Autifony won't have official effectiveness data until this trial concludes.
For myself, the one piece of evidence I'm waiting to hear on the other side is whether or not Mpt is successful at tapering off retigabine without his symptoms returning. With the potential for permanent harm that the drug has, it's a much more attractive prospect if we had a good chance of a lasting cure after two or three months. All things considered, I think this is a good time to exercise patience. We may hopefully have some more information to go on quite soon. I say this as somebody whose tinnitus has been relatively tame of late; were I going through a bad patch I might feel differently.
@Eric Fridley, your GP probably won't give you Potiga. He may, however, refer you to a specialist. Check your insurance and see if this is necessary for you to get coverage. For me it was not so I went straight to a neurologist to ask for Potiga last month. Though I was turned down, I did confirm that a neurologist is the proper specialist to ask. If someone in your family has gone to a neurologist in the past, see if you can get a patient referral. Alternatively, a psychiatrist may be a good second choice. Maybe a good first choice, if like Hudson you have a pre-existing relationship
I still feel we do not have sufficient detail on the Autifony trial to make a determination. For instance, if a non-UK resident wanted to participate, would they need to relocate to the UK for the full month, making multiple hospital visits, or would they be provided with the medicine and expected to check back in only at the end of the month? That's double the traveling expense, so still a show-stopper for me, but perhaps more attractive to Europeans. We should have those details fairly soon.
As Zimichael said, there may be a provision to re-try patients who received placebo with the real medicine. It would make a big difference if that was factually stated and details on how to obtain the supply were provided. It would also make a big difference if somebody at Autifony said, "We expect AUT00063 to be permanently effective within the trial period (4 weeks)." From Benryu's explanations and Mpt's posted experiences so far, I believe this may well be the case, but it's all speculation at this point. Unfortunately it does seem likely we'll hear such a statement, as Autifony won't have official effectiveness data until this trial concludes.
For myself, the one piece of evidence I'm waiting to hear on the other side is whether or not Mpt is successful at tapering off retigabine without his symptoms returning. With the potential for permanent harm that the drug has, it's a much more attractive prospect if we had a good chance of a lasting cure after two or three months. All things considered, I think this is a good time to exercise patience. We may hopefully have some more information to go on quite soon. I say this as somebody whose tinnitus has been relatively tame of late; were I going through a bad patch I might feel differently.
@Eric Fridley, your GP probably won't give you Potiga. He may, however, refer you to a specialist. Check your insurance and see if this is necessary for you to get coverage. For me it was not so I went straight to a neurologist to ask for Potiga last month. Though I was turned down, I did confirm that a neurologist is the proper specialist to ask. If someone in your family has gone to a neurologist in the past, see if you can get a patient referral. Alternatively, a psychiatrist may be a good second choice. Maybe a good first choice, if like Hudson you have a pre-existing relationship
this is very interesting.
you'd think, if autifony wanted to be really sure, they would have a longer period trial,
i mean the general feel has been that these potassium channel openers should be given time to work.
so, considering the millions autifony/glaxo have at stake here, i would surmise that
they are very confident, its a bold approach
from my optimistic window, it does look very promising indeed.
i mean, why risk not having a phase 3
also not having the usa hearing related trial might indicate they are re-thinking things,
focusing on the tinnitus cash-cow, they may want to get there first.
we don't know if they have privately continued treatment with the rats, which may have
shown 00063 works effectively on super-chronic cases. it could be quite exciting.
fingers crossed every one, we'll know the results quite sooner than we thought.
i really want to know the dosage they'll be using, i think it does have some bearing on the
approach with retigabine. maybe its good to see tinnitus in the light of epileptic hyper-excitability.
maybe the drugs work on the same time scale for all related pathologies.
Come on Autifony, you can do it!!!
I don't know really. I'm just basing it upon what Benryu has said in this thread regarding potassium channels and brain plasticity. But when you put it that way it does sound promising that the trial only is 4 weeks. I'm a natural born pessimist so that's why I'm not statisfied I guess. I think Autifony is holding in with A LOT of info. According to @attheedgeofscience they have already tested the drug on people with T but he had no good sources to back this statement though.
But I think we're getting a bit off topic for this thread. This should be discussed in the Autifony thread.
so if the phase 2 trial is good are we expecting aut00063 to come out sooner or do we all still gotta wait till 2018-2019 for it to go public?
One would think if it's a run away success, it maybe sooner rather than later!
Hopefully it is a major success and we don't have to wait too long!
Rich
Hey, I thought I would stop in to remind everyone to stay on track with this thread regarding the Retigabine. I know we're all excited about Autifony, but I think there's a lot that can be learned from Retigabine here and the user experiences. I'm SUPPOSED to be getting a call from the Neurologist this week letting me know that I've been officially referred for an appointment, but it seems my provider is taking her time. That being said...
@Mpt
@Christian78
@Viking
@jamesdk
@Lep
@linearb
@Johno
@SoulStation
@Bogdan
@Hengist
@Zimichael
If you guys could all updated progress forms, etc. as often as you can (once I start retigabine, if they doc will let me, lol... I plan on doing it every couple of days) it would be a huge help and provide a wealth of information. The more we know about the experience of a person as they take retigabine, the better we'll be able to provide information to newbies. I know it's a lot, but what we're really doing here is leveraging the power of the internet to aggregate data about an off label use of a medication in as "scientific" of a way as we possibly can. If no one is running clinical trials for retigabine regarding tinnitus, hell, we can at least aggregate our data on our own!
Thanks,
Hudson
@Mpt
@Christian78
@Viking
@jamesdk
@Lep
@linearb
@Johno
@SoulStation
@Bogdan
@Hengist
@Zimichael
If you guys could all updated progress forms, etc. as often as you can (once I start retigabine, if they doc will let me, lol... I plan on doing it every couple of days) it would be a huge help and provide a wealth of information. The more we know about the experience of a person as they take retigabine, the better we'll be able to provide information to newbies. I know it's a lot, but what we're really doing here is leveraging the power of the internet to aggregate data about an off label use of a medication in as "scientific" of a way as we possibly can. If no one is running clinical trials for retigabine regarding tinnitus, hell, we can at least aggregate our data on our own!
Thanks,
Hudson
I don't think there is any progress to update really, I have stopped taking retigabine and my spikes are very much down, a friend of mine who does not have tinnitus has tried 2 pills of 50 mg and he got a bout of tinnitus for 20 minutes but says that it was very low in sound and would not be hard to tolerate. I joked about taking some more but he refused.
What I would like to see / read is what Retigabine / Potiga does with brain activity (e.g. in qEEG).
At the Brai2n clinic in Belgium they measure that, how different will it be when AUT00063 / Retigabine is taken?
Also the bladder / urinology side effect must be clear. If it's a heavy attack on the kidneys some people might pass.
At the Brai2n clinic in Belgium they measure that, how different will it be when AUT00063 / Retigabine is taken?
Also the bladder / urinology side effect must be clear. If it's a heavy attack on the kidneys some people might pass.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
for me all is ok, sometimes i get like drunk, people lough when they see me walking, and AMNESIA definitely, cant remember single thing were i left something, must be organised, brain is like 60 y old, i cant remember words, things, recall memories, definitely! Who ever say this is nothing it is lie.
Will we ever see the phase 1 trial report for autifony? They mention that in phase 1 the drug was well tolerated and there were no serious adverse effects noted. So hopefully this targeted drug had much less side effects than retigabine.
Thoughts?
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