Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

So @Danny Boy whats the verdict on your experience with Trobalt?
Reading between the lines here doesn't look promising!

Trobalt does work, that's for sure. The odd thing is, does it work because of the potassium channels, or because it works on GABA? Or do they work in synch with each other.

I've noticed drug tolerance with trobalt, possibly due to its effects on GABA. I mean, most drugs that work on GABA work on tinnitus, connection? Most definitely. If the effects of trobalt wear off just take a short break, 1-2 weeks and the effects will be back again. Also remember, if you have anything else with GABA, discontinue before using trobalt, as that will affect the results.


"Retigabine has been shown to interact with the KCNQ2/KCNQ3 subunits of the potassium channels, GABAA receptors, and weakly block sodium and calcium channels. Retigabine is 50–60% bioavailable, metabolized by N-glucuronidation and N-acetylation, 80% protein bound, and has few drug–drug interactions. Recent data suggest that retigabine may have a role as adjunctive treatment for refractory partial-onset seizures. Placebo-controlled trials demonstrated a 23.4–44.3% reduction in seizure frequency with 50% responder rates ranging from 23.2% to 47.0% with varying doses of retigabine. The most common adverse effects, occurring in greater than 10% of subjects in the clinical trials, include abnormal gait, confusion, dizziness, fatigue, headache, nausea, somnolence, speech disorder, tremor, urinary tract infection, and blurred vision.

Retigabine also potentiates GABAA receptor responses at higher concentrations than are effective on potassium channels [Luszczki, 2009; Rogawski and Bazil, 2008; Porter et al. 2007a; Rogawski, 2006]. The activity against GABA receptors, however, was found to be ineffective against the administration of flumazenil, indicating that retigabine differs mechanistically from benzodiazepines [Rogawski and Bazil, 2008; Porter et al. 2007a; Rogawski, 2006]."


http://www.sciencedirect.com/science/article/pii/S0014299903014262


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3513894/

http://onlinelibrary.wiley.com/stor...6e&s=37bab957cb032a48d1295a160e2eec3a976c21f3


http://tru.uni-sz.bg/tsj/Vol. 12 S1/25.pdf

 

[valeri]

Trobalt does work, that's for sure. The odd thing is, does it work because of the potassium channels, or because it works on GABA? Or do they work in synch with each other.

I've noticed drug tolerance with trobalt, possibly due to its effects on GABA. I mean, most drugs that work on GABA work on tinnitus, connection? Most definitely. If the effects of trobalt wear off just take a short break, 1-2 weeks and the effects will be back again. Also remember, if you have anything else with GABA, discontinue before using trobalt, as that will affect the results.


"Retigabine has been shown to interact with the KCNQ2/KCNQ3 subunits of the potassium channels, GABAA receptors, and weakly block sodium and calcium channels. Retigabine is 50–60% bioavailable, metabolized by N-glucuronidation and N-acetylation, 80% protein bound, and has few drug–drug interactions. Recent data suggest that retigabine may have a role as adjunctive treatment for refractory partial-onset seizures. Placebo-controlled trials demonstrated a 23.4–44.3% reduction in seizure frequency with 50% responder rates ranging from 23.2% to 47.0% with varying doses of retigabine. The most common adverse effects, occurring in greater than 10% of subjects in the clinical trials, include abnormal gait, confusion, dizziness, fatigue, headache, nausea, somnolence, speech disorder, tremor, urinary tract infection, and blurred vision.

Retigabine also potentiates GABAA receptor responses at higher concentrations than are effective on potassium channels [Luszczki, 2009; Rogawski and Bazil, 2008; Porter et al. 2007a; Rogawski, 2006]. The activity against GABA receptors, however, was found to be ineffective against the administration of flumazenil, indicating that retigabine differs mechanistically from benzodiazepines [Rogawski and Bazil, 2008; Porter et al. 2007a; Rogawski, 2006]."


http://www.sciencedirect.com/science/article/pii/S0014299903014262


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3513894/

http://onlinelibrary.wiley.com/stor...6e&s=37bab957cb032a48d1295a160e2eec3a976c21f3


http://tru.uni-sz.bg/tsj/Vol. 12 S1/25.pdf

So at what level is your t now?
You only did two rounds right?

 

[Danny Boy]

So at what level is your t now?
You only did two rounds right?

Possibly a 3. Hard to rate this stuff, as I can't compare my tinnitus to others. It's not back to baseline...If it were I'd be screwed royally. I was on trobalt for a long time...If SF ever comes out, we'd be in for some silence, that's for sure.

 

[Stotoph]

Does anyone know if trobalt affects the heart?

I can feel my heart beating without touching my chest. My heart beat seems to be in the normal range, it's just that it has become very prominent.

Has anyone else experienced this?

 

[Atlantis]

Does anyone know if trobalt affects the heart?

I can feel my heart beating without touching my chest. My heart beat seems to be in the normal range, it's just that it has become very prominent.

Has anyone else experienced this?

Heart is very serious, ask your doctor??

 

[Aussie Lea]

Heart is very serious, ask your doctor??

You can be more helpful...

Does anyone know if trobalt affects the heart?

QT interval

A study of cardiac conduction in healthy subjects has demonstrated that retigabine titrated to 1,200 mg/day produced a QT-prolonging effect. A mean increase in Individual Corrected QT Interval (QTcI) of up to 6.7 ms (upper bound of 95% one-sided CI 12.6 ms) was observed within 3 hours of dosing. Caution should be taken when Trobalt is prescribed with medicinal products known to increase QT interval and in patients with known prolonged QT interval, congestive cardiac failure, ventricular hypertrophy, hypokalaemia or hypomagnesaemia and in patients initiating treatment who are 65 years of age and above.

In these patients it is recommended that an electrocardiogram (ECG) is recorded before initiation of treatment with Trobalt and in those with a corrected QT interval >440ms at baseline, an ECG should be recorded on reaching the maintenance dose.

I found this from https://www.medicines.org.uk/emc/medicine/24527

 

[Zimichael]

@Stotoph ... One way to get info on this vast Thread is to do a simple "within Thread search"..... This may help:

However I have wanted to do a post on some "differences of opinion" on a number of Retig. and Kv channels aspects, but have not got to it yet. In short, it depends on the source! (Will try and write this up this later today or tomorrow).

One example, as you bring it up specifically in your piece, is the "heart" thing. This has been mentioned before on the thread too...
OK, there seems to be agreement that Retigabine is hitting hitting Kv7.2 to Kv7.5 and thus avoiding "heart stuff" as it is not hitting Kv7.1. (aka...the supposed 'heart channel').
However, on the new, obviously revised, Trobalt "Package leaflet Information" that came in my box [2014, as it is not the same as the online version from 2012], number two on the list of things to watch out for on page one after a generalized paragraph, is: "Heart Conditions"...
"Trobalt can affect heart rhythm. This is more likely to affect you: ~ If you are taking other meds./Have an existing heart problem/Low potassium or magnesium in your blood/Over 65."
Also, you may recall that in the 2013 Australian application document (the go to source for a lot of stuff on Retig. - but with a few gaping holes!), they go on about "heart stuff" there too.

Now I am not saying I know the answer here. I am just pointing out that there are some "mixed messages" in the literature. Plus I see no reason why GSK would be printing this particular side effect example if they thought there was zero foundation behind it.

Just saying... Best, Zimichael

 

[snow86]

FYI, 40 days of 3x400mg will wreck your liver values. Been there.

 

[Stotoph]

Well I'm in the A&E right now they made a heart film and and x-ray of my heart did some blood work and many other tests.

I'll update when I get the results.

@Aussie Lea @Zimichael

 

[monacco]

@Stotoph
wich test are you doing? I didn't understand

 

[Atlantis]

@Stotoph
wich test are you doing? I didn't understand

Why did you mark his post "funny" then?

 

[just1morething]

Does anyone know if trobalt affects the heart?

I can feel my heart beating without touching my chest. My heart beat seems to be in the normal range, it's just that it has become very prominent.

Has anyone else experienced this?

I'm pretty sure @dan had heart issues taking Trobalt. I seen a psychiatrist and asked him about Trobalt and he looked it up as Potiga in the PDR. He said he would not prescribe it because of potential heart issues listed and didn't want the liability. He said to talk to a Neurologist.

 

[Danny Boy]

I've never had any heart issues with trobalt. Could be GABA related.

 

[papu]

@

FYI, 40 days of 3x400mg will wreck your liver values. Been there.

It depend on the person I guess 4 months after taking trobalt my liver values and renal functions are perfectly fine

 

[Stotoph]

They did some blood work, ultrasound scan, X-ray, ECG.

All came back clear. I can still feel my heart beating without touching my chest but the doctor said that Trobalt might be making me more concious of my heart beating if that makes any sense.

Anyway I will continue taking Trobalt.

@Aussie Lea @Zimichael @Danny Boy @monacco

 

[PatrickG]

Hope you have a good outcome with Trobalt guys!

@papu , how is your T status today?

 

[papu]

@PatrickG After 4 months of takin trobalt up to 1100 mg a days divides in three takes left it on Dec 17 from 7 I would say it has come down to a 2 I do get some spikes up to maybe 6 or 7 (baseline) but they are very rare and only stress or anxiety related and last maybe up to three hours (very manageable). I was going to continue taking it for a couple of months more but I started having floaters and very weird photopsias or light shows when I closed my eye lids. Before when I had screaming t I would have risk anything but now since it's so low and manageable I decided to stop. Retina is OK no detachment or discoloration ophthalmologist thinks it's just the way vision neuron fire with trobalt. It's gone about 60% down since leaving the drug. Am i happy that I took trobalt?, hell yeahhhhh. Would I take it again despite the vision problems?, hell yes if my T goes berserk again. Am I cured?, not by a long shot. Am I better , yesss sitting right now at the beach vacationing with family something I would never thought I would do 4 months ago. So I understand @locoyeti when he decided to stop because I was so low already that you could continue with life without risking more health problems from the pill. And @attheedgeofscience I appreciate all the help and time that you had put into the struggle but I disagree with you. This thread is hugely important because it allows us to interact and help others about retigabine. The other thread you can only post experience but now one can ask about anything unless they do a private message. I think at least for me this 220 or odd pages have been extremely helpful

 

[PatrickG]

Thank you so much for your answer @papu You give me and probably a lot more people hope for the new year.

One thing I have to say, to the pioneers here who started everything, researched and being human test subject – you will be remembered. Maybe this thread is the genesis for further evolution of Regitabine, other drugs and insights.

Happy new year to you all, you guys are fantastic!

 

[papu]

@PatrickG
This is why exactly this thread needs to exist. I think sharing experience is important (it's the only thing we have until a cure is found) and although I feel well and probably my natural instinct will be not to visit the forum I do try to keep connected to share my experience and try to answer questions about my experience with trobalt ( I know it's not to be considered science or anything like that and I am not telling anyone to go out and get trobalt. Just read and make your own desicion like I did). I have high hopes for sf0034 but we will have to wait for a long time yet....( probably when episode 9 of starwars comes out)

 

[liquefact]

What i read here gives me a lot of hope. It seems there's a CHANCE that one can have RTG for a finite amount of time resulting in a permanent T decrease.

Not seeking for a complete elimination of T, we have to be realistic. But any permanent decrease in T means the worlds to us all right? So let's try, i'm planning to start RTG after my AM101 trial ends.

 

[just1morething]

Am i happy that I took trobalt?, hell yeahhhhh. Would I take it again despite the vision problems?, hell yes

@papu, Why would you want to risk your vision problems? What if they don't come back to totally normal?

 

[RaZaH]

My aim with Trobalt is to get rid of the head buzz , tonal T I am ok with , in fact I have come to associate the 3.1 khz tone with my good days ...I am probably repeating what I have already said in this thread.

On some days , this is exactly what trobalt does for me. When / If i reach steady state of no head buzz I will discontinue my Trobalt experiment.

 

[papu]

@just1morething
Thinking back what I know now will I do it again and the answer is yes I rather have floaters for the rest of my life (they are not bothersome and only visible against very bright backgrounds) than have the bestial life changing tinnitus that I had before trobalt. Don't get me wrong I will be very happy if the floaters go away I think they are becoming less and less noticible since leaving trobalt. My vision is as before and never has change while on treatment 0.0 in the left eye (20/20) and -0.5 in the right (very slight myopia) I don't even wear glasses. I am simply at a point were I am at peace with my current level of tinnitus so at this point yes I will not risk it anymore. If it goes up at some point hell yesss I will do it again. Hopefully It will stay manageable until sf00034 comes out.

 

[Martin69]

My aim with Trobalt is to get rid of the head buzz , tonal T I am ok with , in fact I have come to associate the 3.1 khz tone with my good days ...I am probably repeating what I have already said in this thread.

On some days , this is exactly what trobalt does for me. When / If i reach steady state of no head buzz I will discontinue my Trobalt experiment.

How much do you take to get the head buzz under control?
Already seen your post 6803 in the meantime.

 

[PatrickG]

You can't believe how profoundly happy I am for all of those of you who got better. I know this is not a wonder drug but there has to be more data and study on this!

Good we shed all kinds of light on this "partial solution to T". We need critical thinking and keep good record of what's happening during intake. The diaries that are written here are of great value (great initiative). If my T doesn't get better in "some time", I will consider carefully if I will take Trobalt and be part of the study subjects.

Of course, Trobalt might only work to a certain degree and on a certain percent of sufferers, it has terrible documented side effects and is really a risk for your health. But, still, it seems to be the only thing that I ever read about that CAN make the T noticeably better, even if the study data are not complete or trustworthy by miles and only anecdotal. But still! We are here on the forums because science, medicin and doctors don't know this yet. Or very few. I've been at one of the best ear and T doctors here in Sweden and they really don't know much more than me about T. Here is where you get the latest facts and data on T. On this forum What a resource for them to make use of...

Solutions for T? There are so many ADs, supplements, treatments, therapies, diets, you name it... Some work better than others but no one is even remotely guaranteed to work. Nor does Trobalt but doesn't it seem "different" than all the others in that it seem to do something to the users T?

Trobalt is a great risk to take, but for those who are desperate? I can understand, without a shadow of a doubt, why you try it (I have severe constantly fluctuating, multi-noise T).

They so must do that clinical study. If a were a billionaire I would fund it

Yes you have to take care of body and soul first to give it optimal conditions for recovery, then if your T is really destroying the quality of your life, you looked over over all the side-effects, then you can consider Trobalt. What do you guys think? I mean at this point when we don't know that much really about all the effects that T gives.

 

[papu]

@papu,Why would you want to risk your vision problems? What if they don't come back to totally normal?

I guess it all depends on your tinnitus level at the point I started taking trobalt. My level justified any risk if you are even contemplating about side effects then trobalt is not for you and your tinnitus probably it is not that high or you have manage to cope with it. Trobalt is to be used as last line of defense a hail Mary before giving up and try to live a half life or ended all, that's how I see it. At that point in my life I had nothing to loose.

 

[PatrickG]

Understandable @papu!

 

[Mithrandir]

@liquefact
My audition is so perfect, I can't try AM 101, I will try trobalt... I think everybody has T, but our is too strong...when you can feel it in a quiet room, that means is too loud...
I read some report of trobalt user where a lot of bad little things like reactivity of T disappeared with the (King) Trobalt so if you can't make disappear totally the T you can win a lot of in quality of life

 

[liquefact]

@Mithrandir, my audiogram was perfect as well, only until i had AutoAcoustic test which showed some hearing disfunction. Even if you really have perfect hearing, you can develop T and this may be because of a hearing loss which does not show up in the tests.

The main requirement of AM101 inclusion, besides being in the acute stage, is having a stable (not fluctuating) T which covers both loudness and pitch. They should not vary greatly over time (I had great difficulty convincing the trial site that i had a stable one though it's always audible, so few sounds can mask it. This is not because of the loudness but the frequency of my T).

In terms of H, Keppra helped some people to get rid of/minimize the hyperacousis. Danny Boy can step in here or you can read his posts.

Long story short, i believe RTG helps, it's one of the most promising treatments coming along for T (SF0034 is a derivative of RTG). As long as we can sustain the side affects and not be in that drug for long time and it helps reduce the T permanently, i believe it's worth the risk. So we'll see.

 

[valeri]

I would like some people to stop scaring others with side effects!
I'm not saying there's no side effects (the list is very long) but every single person will react differently.
So far:
1. No one died
2. No one had any permanent damage

You can eat a strawberry or peanut and die!