Retigabine (Trobalt, Potiga) — General Discussion

[Jay M]

Hello i have been on this thread a couple of times and something occurred to me that I hope one of you in the know might help with.?

My T was not caused i don't think by any acoustic trauma, Drugs or similar but by a stressful period I was going through at the time and that along with a small high frequency hearing loss ( that I never knew I had ) is most likely how i got my T .My question is that because of this factor on how I got it does anyone think that retigabine or even the AUT if ever available would help me , hopefully it might all though I don't seem to have all the classic reasons on how it started ? can they both work on tinnitus no matter what the reason of the cause ?

T is an internal alarm sounding off from the brain when something in the body is not right especially the nerves involving the inner ears. I believe T is also a result of brain damage from loud sounds and or high dosage of meds and this is why some with or wo hearing loss have or don't have T. Some people get hit in the head and get T so loud sounds is like the same shot over time or instantly like a gunshot. It is my impression and opinion that it doesn't matter what caused it as long as there's not multiple health issues (known or unknown) going on at the same time bc it's all coming from the brain and the mechanism that causes T can be resolved or reduced with Retigabine. I could be very wrong but it's just my opinion from reading and drawing conclusions.

 

[Christian78]

Hopefully the amnesia is not permanent! (that is, if you go off the drug, you have pre-drug levels of mind clarity).

Also, perhaps the amnesia effects will lessen over time? Who knows.

When i skipped those 2 dosage it was kind ok, no amnesia or blurry vissions

 

[Hudson]

When i skipped those 2 dosage it was kind ok, no amnesia or blurry vissions

@Christian78 , how has your tinnitus been lately now that you've been taking Retigabine a little longer?

 

[william2]

"unproven" surely means to the medical community at large. This medicine is to date unproven to everybody, including its creators.

I think it's a fine thing you're doing, just please don't take radical steps before the doctors have had a chance to prove to themselves the efficacy of the drug. You should assume at this point that literally nobody has benefited from AUT00063. We really can't speed anything up before the Phase II trial even begins.

My partner has been suicidal. I will do whatever I can to help my partner and the good people
like yourself to ease our group suffering. I applaud your concern to handle this correctly
and appreciate all comments you have made. If we can early access AUT00063 it would
be a wonderful thing. I expect nothing more than human compassion.
phase 1 was safety, phase 2 is efficacy I understand.
the important benefit of early access is no placebo.

"The trigger for an Early Access to Medicines scientific opinion does not necessarily have to be the submission of a dossier for marketing authorisation application, but the availability of a sufficiently compelling case based on the total data and evidence collected to date as assessed by the MHRA" (UK regulatory body)

The science is strong and innovative. Otherwise they wouldn't be pumping millions into it.
And this scheme is good for companies too.

"Companies are expected to invest more in the UK as a result because of their increased confidence that they can work with doctors and patients to get experience of the new medicines and bring drugs to patients quicker."

 

[Rube]

William is it possible for your partner to try Regitabine or is it tough to acquire?

 

[Hudson]

Thanks for the cautionary advice Steve.
Let's keep this clear and simple.
No-one is making demands. And nothing needs proving.
My partner is a UK resident, legally tested & recognized as debilitated by tinnitus.
A govt scheme now allows companies to make available medicine which is not yet licensed.
The company simply has to submit uncomplicated paperwork.
I shall write to Dr.Large, explaining this scenario,
and will suggest to him that this presents a wonderful opportunity to help truly suffering people.
If Dr. large helps us, the medicine will be available.
If Dr.Large is uncertain, then we shall organize the world's biggest online petition
which will collect thousands of signatures and all the associated media coverage
for our new Tinnitus Early Access Medicine (TEAM) action group.
So let's take it by baby-steps.
Dr.Large may actually be a decent fellow who wants to help his fellow man
and he may also want to bask in the glow of positive publicity.

Many of us will be happy to take the same' risk' as other phase 2 participants.
For sure, it will be safer than Retigabine.

@william2, the Autifony tinnitus trial in the UK is starting very soon, either by the end of the month or the beginning of october. It's only open to UK residents. You should see if he can try out. Dear god, I would try out if I lived in the UK.

Hudson

 

[william2]

@Rube, yes we will be asking doc for retigabine.
@Hudson, my partner is long-term chronic, even then unable to travel or do anything really
thanks for the comments, they are a comfort.

 

[rtwombly]

Has anyone tried to contact Professor Tzounopoulos? I wonder if he might be willing to advise us on the best way to take retigabine - dosing regimen, how long we should expect side effects to last, antioxidants or other supplements to offset side effects - and maybe update us on his current research.

If nobody's tried recently, I'm willing to draft an email. I know we had a discussion on whether or not it would be wise to alert Glaxo-Smith Kline about our efforts and some wanted to keep it hush-hush, but all our efforts and those of Autifony are building off discoveries made by Prof T and his team. He's sure to be sympathetic, at least.

And for those thinking it's been a long wait, that discover was made last year: http://www.upmc.com/media/NewsReleases/2013/Pages/pitt-team-finds-mechanism-causes-tinnitus.aspx.

 

[Rube]

@rtwombly I'd be willing to help in any way to reach out to Prof. Tzounopoulos but I highly doubt he would be willing to advise use. I wish he would but I don't think he would put his reputation on the line.
Does anyone know if they ever tested it on people after the mice experiments?

 

[Zimichael]

URINARY RETENTION TIPS...

Dunno'...maybe this will be useful to you @Viking ...or others, (and me when my Potiga arrives some century).

Seeing as Urinary Retention is one of the most likely early unwanted side effects (plus a dangerous one - and if you don't know why please go back and do homework on this thread rather tan re-igniting that debate with more pages. Ta much!), I talked with a neighbour who is an NP, working in urology for past 8 years. Here's the skivvy:

~ Do NOT add more fluids or force fluids. Obvious really, as if it's not coming out just pouring more in will just increase the problem.
~ "Timed Voiding" helps to keep the bladder going on the: "Oh yeah, my function here is to pee this out" track. So, even if you don't feel like peeing just go pee every two hours or so anyway. Thus the retention tendency may get a kick in th crotch and not set in so easily. [Gawd, like when at times there is nowhere to pee and if I/you? hold it in waaaaay over the time limit, then can't pee when finally get a chance. Takes me forever for the bladder to calm down and go: "You sure? There's not 500 people watching the poor white man trying to pee by the side of a bleedin' teeming highway? (One of my least fun moments in India...Actually there were lots of un-fun moments. Talk about NOISE on steroids... but I digress). I can really do this? I can stop being a martyr and make this liquid offering?" Etc., etc.].
~ The Crede Maneuver...Google it for videos and whatever... "By bearing down and squeezing the abdominal muscles, the pressure within the bladder will be increased and voiding can be facilitated. Crede Maneuver—This is a medical term for manual pressure on the lower abdominal wall in an attempt to better eliminate urine."
~ "Intermittent catheterization"...In other words, not keeping a catheter in all the time but just when you need it to try and get through a tough spot, which possibly is temporary. An "in and out" strategy. Ummmmmm...I have never had a catheter in (well when conscious) so not sure how hard it is to do or if you need a friendly urologist neighbour, or doc.

OK, that's the basics. And yeah, you will know if you have genuine Urinary Retention as you will get really uncomfortable and bloating will kick at bladder location, etc., etc. If so, don't leave it forever or you will end up in the ER well before that 'kidney that wandered too near the Pleiades during meteorite season' photo comes into effect.

Best, Zimichael

 

[rtwombly]

@Rube I don't think we've had any contact, so no information that's not on that press release. I'll draft an email tonight. About to meet a new doc and ask for retigabine!

 

[william2]

@rtwombly, good idea about the professor. i'm sure he'll appreciate your acknowledgement of his achievements.

with regard to early access scheme, the regulators probably need some clinical trial feedback
so yes it would be wise to wait for phase 2 results, but at least brief him on the idea for now.
any idea or rough guess on how long before phase2 wraps?

 

[Christian78]

@Christian78 , how has your tinnitus been lately now that you've been taking Retigabine a little longer?

It goes up and down, but it is less affecting me I know because I can sleep easier and survive during a day. It never went away, last 2-3 days is hard, but i watch a movie and not notice it. Side effects also very, i don't know why sometimes, often none, then some pill makes you have all of them at once.

 

[Zimichael]

Has anyone tried to contact Professor Tzounopoulos? I wonder if he might be willing to advise us on the best way to take retigabine - dosing regimen, how long we should expect side effects to last, antioxidants or other supplements to offset side effects - and maybe update us on his current research.

If nobody's tried recently, I'm willing to draft an email. I know we had a discussion on whether or not it would be wise to alert Glaxo-Smith Kline about our efforts and some wanted to keep it hush-hush, but all our efforts and those of Autifony are building off discoveries made by Prof T and his team. He's sure to be sympathetic, at least.

And for those thinking it's been a long wait, that discover was made last year: http://www.upmc.com/media/NewsReleases/2013/Pages/pitt-team-finds-mechanism-causes-tinnitus.aspx.

rt...Nice simple summary there.

Incidentally, I'm presuming others are aware of the Big Pink Potassium Channels Elephant In The Room...
as I'm sure 'amused' by it and wondering how it will play out.
Briefly, it's the 'sort of fact/presumption' that AUT00063 is the "killer app", as it is a laser guided bullet hitting The big Kahuna Tinnitus Target = the Kv3 channel(s). Whereas ol' Retigabine hits the Kv7 sub-group in a more crude shotgun approach at K channels....Yet Retigabine is here before us, c/o of our intrepid explorers, affecting tinnitus. And it sounds like the U Pittsburgh folks are totally into the Kv7's, etc.
So obviously there is crossover (which @benryu covered decades ago) and it makes me wonder if.....
Well, I'm not going to speculate.

Best, Zimichael

 

[Mpt]

Has anyone tried to contact Professor Tzounopoulos? I wonder if he might be willing to advise us on the best way to take retigabine - dosing regimen, how long we should expect side effects to last, antioxidants or other supplements to offset side effects - and maybe update us on his current research.

If nobody's tried recently, I'm willing to draft an email. I know we had a discussion on whether or not it would be wise to alert Glaxo-Smith Kline about our efforts and some wanted to keep it hush-hush, but all our efforts and those of Autifony are building off discoveries made by Prof T and his team. He's sure to be sympathetic, at least.

And for those thinking it's been a long wait, that discover was made last year: http://www.upmc.com/media/NewsReleases/2013/Pages/pitt-team-finds-mechanism-causes-tinnitus.aspx.

I have contacted him two different times to let him know about my results. He emailed me back once and wrote a short note about , I don't think he is really willing to advise regarding dosages, etc for retigabine as (and I'm speculating here) that isn't what his research has been focused on and there could be possible liability issues too

 

[Mpt]

I had an audiologist appointment yesterday to get some new musician quality ear plugs, get molds taken, etc- my audiologist knows about my "success", not only did I not hear anything with the plaster, or whatever it is in my ears-- out of curiosity he actually then suggested I go sit in the booth for a minute or two if I wanted- which I did-- and I heard absolutely nothing for the 2-3 mins I was in there

 

[Rube]

I had an audiologist appointment yesterday to get some new musician quality ear plugs, get molds taken, etc- my audiologist knows about my "success", not only did I not hear anything with the plaster, or whatever it is in my ears-- out of curiosity he actually then suggested I go sit in the booth for a minute or two if I wanted- which I did-- and I heard absolutely nothing for the 2-3 mins I was in there

@Mpt - that is awesome to hear (pun intended). Can you update us on if you are feeling any of the side effects? Did you change the dose or are you still at 900 MG per day? Plans to reduce dose?

 

[SoulStation]

I had an audiologist appointment yesterday to get some new musician quality ear plugs, get molds taken, etc- my audiologist knows about my "success", not only did I not hear anything with the plaster, or whatever it is in my ears-- out of curiosity he actually then suggested I go sit in the booth for a minute or two if I wanted- which I did-- and I heard absolutely nothing for the 2-3 mins I was in there

Good work and congrats! Have you had your hearing checked? Did you have a baseline reading before your t or start of Potiga dosage?

 

[jeannie]

i go to neurologist soon ..if my doctor recommends it and im going to ask about this drug.....

 

[Mpt]

Good work and congrats! Have you had your hearing checked? Did you have a baseline reading before your t or start of Potiga dosage?

Yes I did-- no clinically relevant hearing loss- loss of 10-15 db across the board and then loss of either 20 or 25 db at 8000... haven't had a hearing test since I've been on retigabine

 

[dan]

@william2, the Autifony tinnitus trial in the UK is starting very soon, either by the end of the month or the beginning of october. It's only open to UK residents. You should see if he can try out. Dear god, I would try out if I lived in the UK.

Hudson

How do you know that the Autifony trial will be open to UK resident only??

 

[Mpt]

@Mpt - that is awesome to hear (pun intended). Can you update us on if you are feeling any of the side effects? Did you change the dose or are you still at 900 MG per day? Plans to reduce dose?

I haven't mentioned it on the forum yet, but I have to several members over pm-- I did recently start tapering (unlike my taper up, I'm doing this slowly)... so far so good, I will let you all know if that changes

 

[Rube]

I haven't mentioned it on the forum yet, but I have to several members over pm-- I did recently start tapering (unlike my taper up, I'm doing this slowly)... so far so good, I will let you all know if that changes

Thank you for the info. Please do keep us updated as you taper down.

Sorry to be a pain but it doesn't seem like you are seeing any side effects, can you share if you have any? That's what kinda scares me the most about trying it.

 

[locoyeti]

I haven't mentioned it on the forum yet, but I have to several members over pm-- I did recently start tapering (unlike my taper up, I'm doing this slowly)... so far so good, I will let you all know if that changes

excellent news @Mpt . Could you give us dosage details of your planned taper down? If I were doing this I would probably decrease my daily total dosage by 50mg, and probably go a week or two (or more) before the next 50mg decrease, just so that the brain doesn't kick in some compensatory mechanism to revert back to the initial T level.

 

[locoyeti]

@Bogdan do you have any updates for us?

 

[Mpt]

excellent news @Mpt . Could you give us dosage details of your planned taper down? If I were doing this I would probably decrease my daily total dosage by 50mg, and probably go a week or two (or more) before the next 50mg decrease, just so that the brain doesn't kick in some compensatory mechanism to revert back to the initial T level.

I'm reducing 100mg every five days.. so it will take about a month and a half to taper completely

 

[Mpt]

Thank you for the info. Please do keep us updated as you taper down.

Sorry to be a pain but it doesn't seem like you are seeing any side effects, can you share if you have any? That's what kinda scares me the most about trying it.

Just more tired in the evenings, but thats about it

 

[william2]

http://www.upmc.com/media/NewsReleases/2013/Pages/pitt-team-finds-mechanism-causes-tinnitus.aspx
"We found that mice with tinnitus have hyperactive DCN cells because of a reduction in KCNQ potassium channel activity," Dr. Tzounopoulos said. "These KCNQ channels act as effective "brakes" that reduce excitability or activity of neuronal cells."

http://www.ncbi.nlm.nih.gov/pubmed/23716673
"a reduction in Kv7.2/3 channel activity is essential for tinnitus-specific hyperactivity."

Considering retigabine specifically acts on KCNQ2-KCNQ5 (Kv7.2-Kv7.5) channels,
it should be pretty much perfect for the job.
Like a guided missile with tinnitus written on it!
which is why it's been beneficial in our trial. (Prolonged treatment
and fine tune dosaging may be part of the key to further success for some).

I do find the science (interspike intervals,repolarization,etc) a bit heavy but the general picture is good.
And there is some good safety profile.
Not activating KV7.1 means it avoids cardiac side-effects.
And let's remember it's being used for CHRONIC epilepsy, to calm brain hyperactivity.

So GOOD LUCK and GOOD HEALTH to all those participating in our online trial.
We shall soon be joining you. Wouldn't it be great if R got great results like kv3-hitting AUT00063.
We're lucky because R is also a recent first-in-class drug.
So plenty of reasons to be hopeful and optimistic.

if you can handle the science, read this:
http://www.ncbi.nlm.nih.gov/pubmed/22220513
"KCNQ channels are active at the normal cell resting membrane potential and contribute a continual hyperpolarizing influence that stabilizes cellular excitability. Retigabine increases the number of KCNQ channels that are open at rest and also primes the cell to retort with a larger, more rapid, and more prolonged response to membrane depolarization or increased neuronal excitability. In this way, RTG/EZG amplifies this natural inhibitory force in the brain, acting like a brake to prevent the high levels of neuronal action potential burst firing..."

 

[Rube]

Just more tired in the evenings, but thats about it

Thanks for the info. Are you planning to come completely off or just maintain a lower dose?

 

[Mpt]

my plan is to come completely off of it, and if I'm still clear - I'm going back to my audiologist (we discussed this yesterday), I'm going to sit in the audiologist booth for 15 minutes and if I hear nothing like I did yesterday, the audiologist and my gp father-in-law who originally prescribed me retigabine are going to write a letter to whatever sap happens to be the ATAs scientific advisor at the moment with my case history, dosing regime, etc