Retigabine (Trobalt, Potiga) — General Discussion

That does not sound like a serious side-effect, sometimes I have urinary retention when I am experiancing stress about something, I mean maybe it is only you working yourself up about this being too much that you can handle. Once my friend took some drugs that I told him have insomnia as a side-effect and increased heart rate than immediately he said he experianced it. Afterwards I tested if this was true by telling him that I lied about the sideeffects just to annoy him and than his insomnia and heartrate problems went away -.-' Like immediately next day he had no problems and none after that.
The decision of the poster lies with him and should be respected. Personally I agree with him. Not only is urinary retention a listed side affect, another poster also experienced it.I would do exactly the same. Taper off and see if the side affects diminish. Then start slowly again and ramp up. It's a wise and responsible decision.
 
No problem. I'm not mobile at the moment but as soon as I am I will be sure to track it down and tag you in the response.
Hi @dan - an update on getting Retgabine in the UK. I asked at one of the pharmacies here. It is listed as Retgabine. Comes in 50,100, 200, 300 and 400 as we all know. However, it is not available from their suppliers and the pharmacist said if it wasn't available through them, then it probably would not be available through other suppliers.

He reckons my best bet was to go see a doctor and see if he/she could get it prescribed and ordered for me. So still no "real" info yet really if I can get it in the UK. The doctor might say he can't get it. Will have to see, next time I need to see the doc. Sorry guys :-(
 
Probably just thinking out loud here but is there any way that this results could be presented to medical research people so that at least they have some starting point!
I know there is Autiphony happening but if Potiga is already giving some results isn't that worth of further investigation.
 
Hi @dan - an update on getting Retgabine in the UK. I asked at one of the pharmacies here. It is listed as Retgabine. Comes in 50,100, 200, 300 and 400 as we all know. However, it is not available from their suppliers and the pharmacist said if it wasn't available through them, then it probably would not be available through other suppliers.

He reckons my best bet was to go see a doctor and see if he/she could get it prescribed and ordered for me. So still no "real" info yet really if I can get it in the UK. The doctor might say he can't get it. Will have to see, next time I need to see the doc. Sorry guys :-(

Thank you for this update, very appreciated.
I just don't understand why a drug that is patented and produced by a UK company, is not readily available in the UK. This is very weird.
 
Probably just thinking out loud here but is there any way that this results could be presented to medical research people so that at least they have some starting point!
I know there is Autiphony happening but if Potiga is already giving some results isn't that worth of further investigation.

I think @jazz mentioned earlier in the thread that Retigabine is being worked on by the university of Pittsburgh to remove the side effects. Don't know if they are also working on the T aspect of this drug. And my guess is that Auris medical's next drug AM-102 also will be a potassium channel modulator.
 
These potassium channels seem to be gettin compettitive in pharma/research! Since we know reg works for some and has an impact on others its soo damn exciting.. Researchers are gonna prob tweek the drug/and make it even better but autifony now looks so good too so i cant help but think that autifony is even gonna be better then reg! :) --- good job to everyone tryin out the drug!!!
 
These potassium channels seem to be gettin compettitive in pharma/research! Since we know reg works for some and has an impact on others its soo damn exciting.. Researchers are gonna prob tweek the drug/and make it even better but autifony now looks so good too so i cant help but think that autifony is even gonna be better then reg! :) --- good job to everyone tryin out the drug!!!

Let's all hope that!

Little off-topic here, and sorry i guess this has been asked before.. but two questions.

Is autifony the same as aut00063? or is autifony the ones who make aut00063?

Are there currently trials going on with autifony/aut00063?
 
I know!!!! :) i guess we wont know until they put up the eligibility criteria which should be within a few days hopefully.. Maybe it will say how long there or you could always email them and ask
 
Damn, im excited to hear some results from the trial !

EDIT: is there any period of time they will run the trial? like 3 months or a year something..

My guess is that the trial will be at least 6 months. Then there will be data collecting of the results, putting it all in a document and then publish it. The only way we will know if it has potential or not is if someone from here can get into the trial and report back to us in real time.
 
My guess is that the trial will be at least 6 months. Then there will be data collecting of the results, putting it all in a document and then publish it. The only way we will know if it has potential or not is if someone from here can get into the trial and report back to us in real time.
I will try but i doubt I will get on as I am on the AM101 trial :-(
 
Don't know if this was posted, but I found this to be very informative:
http://onlinelibrary.wiley.com/doi/10.1111/j.1476-5381.2009.00111.x/full
@locoyeti I think you may have found the killer app for informing doctors on retigabine's potential as a treatment. I'm quoting partly just to keep the link. If anybody is going to a neurologist, take that link with you. It clearly indicates the activity of retigabine on the KCNQ channels, including 7.4, which is a big one in the cochlea.
 
realized it had been over a week since my last update-- the past week was the best week ever, and after having my progress kind of "stall" after my my initial improvement, I can definitely say that I have witnessed a further improvement the past few weeks- I can't remember the last time that I heard my tinnitus without sticking my fingers in my ears to look for it, it was probably over two weeks ago-- and for the past week I literally have had no-- zero tinnitus, just to keep track I go into my bathroom, shut the door and stick my fingers in my ears on a nightly basis (i know that sounds crazy, but if the tinnitus is still there that is the only situation in which I can hear it) and for the past 10 days or so I haven't been able to hear anything even when concentrating in a quiet room with my fingers plugging my ears- I plan to eventually taper down and see if the sound reappears-- good luck to everyone else trying this
 
realized it had been over a week since my last update-- the past week was the best week ever, and after having my progress kind of "stall" after my my initial improvement, I can definitely say that I have witnessed a further improvement the past few weeks- I can't remember the last time that I heard my tinnitus without sticking my fingers in my ears to look for it, it was probably over two weeks ago-- and for the past week I literally have had no-- zero tinnitus, just to keep track I go into my bathroom, shut the door and stick my fingers in my ears on a nightly basis (i know that sounds crazy, but if the tinnitus is still there that is the only situation in which I can hear it) and for the past 10 days or so I haven't been able to hear anything even when concentrating in a quiet room with my fingers plugging my ears- I plan to eventually taper down and see if the sound reappears-- good luck to everyone else trying this
Dear Matt; are you still taking 900mg ?
Thank you
 
realized it had been over a week since my last update-- the past week was the best week ever, and after having my progress kind of "stall" after my my initial improvement, I can definitely say that I have witnessed a further improvement the past few weeks- I can't remember the last time that I heard my tinnitus without sticking my fingers in my ears to look for it, it was probably over two weeks ago-- and for the past week I literally have had no-- zero tinnitus, just to keep track I go into my bathroom, shut the door and stick my fingers in my ears on a nightly basis (i know that sounds crazy, but if the tinnitus is still there that is the only situation in which I can hear it) and for the past 10 days or so I haven't been able to hear anything even when concentrating in a quiet room with my fingers plugging my ears- I plan to eventually taper down and see if the sound reappears-- good luck to everyone else trying this

HI Mpt I think everyone here is interested on your journey at the moment so what dosage are you currently taking and how long now have you been on the amount you are on, how much longer do you think you might go before you taper off. ?
 
This is interesting and might shed some light on how prozac interacts with tinnitus -- and maybe why tinnitus sometimes shows up as a side effect of SSRIs?
http://www.ncbi.nlm.nih.gov/pubmed/18187934
Fluoxetine reduced Kv3.1 whole-cell currents in a reversible, concentration-dependent manner, with an IC(50) value and a Hill coefficient of 13.4 muM and 1.4, respectively. Fluoxetine accelerated the decay rate of inactivation of Kv3.1 currents without modifying the kinetics of current activation. The inhibition increased steeply between 0 and +30 mV, which corresponded with the voltage range for channel opening. In the voltage range positive to +30 mV, inhibition displayed a weak voltage dependence, consistent with an electrical distance delta of 0.38. The binding (k(+1)) and dissociation (k(-1)) rate constants for fluoxetine-induced block of Kv3.1 were 5.7 microM(-1)s(-1) and 53.5 s(-1), respectively. The theoretical K(D) value derived by k(-1)/k(+1) yielded 9.3 microM. Fluoxetine did not affect the ion selectivity of Kv3.1. Fluoxetine slowed the deactivation time course, resulting in a tail crossover phenomenon when the tail currents, recorded in the presence and absence of fluoxetine, were superimposed. Inhibition of Kv3.1 by fluoxetine was use-dependent. The present results suggest that fluoxetine acts on Kv3.1 currents as an open-channel blocker.
 
This is interesting and might shed some light on how prozac interacts with tinnitus -- and maybe why tinnitus sometimes shows up as a side effect of SSRIs?
http://www.ncbi.nlm.nih.gov/pubmed/18187934
I do not want to contest. There are several studies on pubmed about antidepressant molecules and all are extremely mixed. Some say that antidepressants are a first-line drug in the treatment of tinnitus (ATA especially ...) and others argue that there is sufficient evidence. In my case, using both Prozac, paroxetine, sertraline, escitalopram I only had a worsening. The only AD that gave me slight benefit are the old tricyclics such as amitriptyline. I had to stop for the side effects on heart rate. I think wanting to do a risk benefit ratio, it is much better to risk with recent anticonvulsants.In the specific case of Prozac, too many people have developed tinnitus and others are even worse
 
I have just obtained a prescription for retigabine and will hopefully have no problem getting it as it is quite rare in my country.
If you have any problems getting it there, which you should not, then you should speak with Christian about it as he has experience getting this drug in this region.
 
@locoyeti I think you may have found the killer app for informing doctors on retigabine's potential as a treatment. I'm quoting partly just to keep the link. If anybody is going to a neurologist, take that link with you. It clearly indicates the activity of retigabine on the KCNQ channels, including 7.4, which is a big one in the cochlea.

@locoyeti & @rtwombly ... Well if you can get a doc to read this you should run for Congress...as maybe something would actually get done for a change. :)

This is a good article (have not read the fine print yet) but nothing new v. what has been posted and referenced numerous times before on the thread. The 'Australian application' source is still the gold standard in my opinion, despite the "things left out" aspects I mentioned.
Not knocking this, just saying that indeed there is tons of stuff out there on the details of KCNQ/Potassium channels...Waaaaay too much for me to deal with even after 18 hours of perusing it over the weekend (from which came my report, etc.).

Probably just thinking out loud here but is there any way that this results could be presented to medical research people so that at least they have some starting point!
I know there is Autiphony happening but if Potiga is already giving some results isn't that worth of further investigation.

@valeri ...Ummmmmm, I'm not so sure about this 'good thought' at present. I can't give you any hard and fast reason but I think it is premature for one. Then there is the other nagging feeling I have that I'm not so sure GSK would be thrilled to know about this "trail" we are doing here. Certainly my local pharmacist was pretty upset about the whole aspect of using it for other than the label requirement (seizures) - which came out as a consequence of having to explain why I wanted larger dose pill so I could cut them to taper....Which then caused another freak out. In the end my doc's office had to lean on them to get a grip, but then I got hit with the "well then you have to buy a full carton" = at prohibitive price...which put the kibosh on the whole thing.

In short. I am sure there are a number of Pharma and research people out there who know what the potential of K channels and tinnitus is...let alone Autifony, as the wealth of gene data, articles, inquiry, etc. on it all is not small!
Thus the people who really need to know about this (if all goes well) are the people who could grease the wheels for quicker approval, if and when a "real McCoy tinnitus specific" K channel drug is "acceptable"...i.e. ref Phase II then III trials.
And ladies and gentlemen...we come back to Autifony. And I bet they are worried that someone else is working on this too (or they should be!) as for sure this is big time $$$ market. Tinnitus is not some esoteric back-water "illness" and ruins a lot of people's day let alone the VA's.

At this point I would not mess with the process too much, let's just see how this plays out for a while.

P.S. Scrip in at 'Canada' right now. Just waiting to pay.

Best, Zimichael
 
Had a chat with my dr today, and he was open to me trying Trobalt. So the good news is it is sold here now (in the netherlands) and he is willing to prescribe it to me. But he is very hesitant because of the numerous side effects many of which are not well understood. So we both agreed im going to try some other things before I go that path. Hopefully get some more feedback from the incredibly brave people on here.
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now