Retigabine (Trobalt, Potiga) — General Discussion

Sometimes the cure can be worse than the disease.

 

So, I know I'm late to the party, but I've actually been trying out RTG. I know it's a moot point now seeing as it will be discontinued, but I was determined to give it a try upon completion of AM101. My tinnitus is fairly severe 7-8/10. Before taking it I got a metabolic panel to monitor liver and kidney function, and I saw an ophthalmologist telling them I would be taking this medication beforehand. They researched it and did a ton of eye tests including dilation, looking at my retina, taking several images of my retina and fundus, and of course vision tests. I know this doesn't protect me from side effects, but it will help to detect if any changes have occurred. One thing I did find out is that it's easy to detect a change in retinal pigmentation if the person is fair skinned (which I am). This is because there is more of a contrast when looking at the retina.

I slowly tapered up using 50mg pills up to 200mg tid. 100mg tid takes the edge off bringing it down from a 7-8/10 to about a 5/10. 200mg takes it down to what I consider mild tinnitus (something that is masked by outside noises), and good god the difference is night and day. It's tempting to go for a higher dosage, but I don't think that would be wise because of the increased risk of side effects. If I get a good night's rest on 200 tid my tinnitus is 1-3/10. If I don't sleep well or I'm stressed my tinnitus is still about 4-5/10.

Right now my side effects are minimal, mainly dry eyes for which I have been using eye drops and gel eye drops at night. It does seem to affect memory while on the medication. I seem more likely to forget words or misspell things when typing while on it.

 

@Alue
Good to hear that it help you . I had more or less the same account of events as you. Acoustic trauma and am 101 then trobalt. Took it for maybe 5 months out total up to 300 tid but usually on average 200 mg tid. Left it because of floaters. Its not a cure but it defineatly makes tinnitus manageable. Last dose in april or march 2016. Thank god floaters are all but gone. I am doing fine trobalt help me habituate. Waiting for sci fluor to come out with there product so i can feel complete silence at least while taking the drugs without eye effects.

 

Sounds like you found something that works for you. Are you planning to keep taking it regularly or was it just a test? (I guess I read it's been discontinued so maybe you can't use it as a strategic weapon against your T)

 

Just a short update :
I did try Trobalt + Guanfacine (a HCN modulator) together, as it is assumed it could be beneficial (see here : https://www.tinnitustalk.com/thread...ce-to-tinnitus-potential-drug-theraphy.10872/). The experimentation unfortunately hasn't been beneficial at all, it basically changed nothing to my T. I've been able to taper up to 1200mg retigabine and 4mg guanfacine daily, and I took both drugs together for something like 6 weeks. Regarding side effects, I had bad constipation because of Guanfacine (was not so funny), but I didn't noticed any "interaction effect" (whether good or bad) between the 2 drugs in my case.
All in all, my T is still like I described it here : https://www.tinnitustalk.com/thread...-general-discussion.5074/page-219#post-147579 ... which means better than before I tooked trobalt, but not as good as it was during my first two months on the drug

@locoyeti When you say that the "overall level of my t has either stayed the same or has slightly gone down" do you mean it has stayed the same since you stopped trobalt or it has stayed the same as it was before you started trobalt ?

 

I talked a lot with Locoyeti and I know Philemon very well. Trobalt functions for them 'cause they surely had DCN problems. No results for me... Good luck guys.

 

its so hard to assess this very subjective phenomenon, particularly given the passage of time. given how great a part of the suffering was caused by the hyperacusis, the alleviation of that particular symptom itself (due to RTG) greatly reduced my 'level of t'. in terms of the loudness of the noise, i think i can say that the trendline was a slow general reduction of noise and discomfort since onset, but with the RTG trial and afterwards, there seems to have been a perceptual leap downward in 'level of t'. i feel like the sound level is lower now than it was before RTG. again, it is hard to disentangle removal of emotional valence (tincture of time) from the equation.

if i am honest i would say that it has mostly been an attitudinal adjustment with regard to my t which has helped the most. this is something that is not conveyable to someone that has recently been stuck with tinnitus, but what really helps the most is simply not caring about it. this was told to me many times during the first year i had t, and it simply boggled my mind that someone could live with this and not pay any attention to it. the mind has an uncanny ability to habituate to anything. it is my belief that RTG helped considerably in facilitating habituation.

the question of whether RTG has a permanent effect on your t, i think it probably has a small effect, but the gains in taking the drug on a ongoing basis in my opinion are marginal and not worth the health risk of chronic use. to those that want to try this i would either use it 1) on a short course trial run of ~2 months, to maximize its effects both for habituation and the potential permanent decrease (particularly with hyperacusis), or 2) as an occasional 'pill' for any spikes in t. i think taking RTG everyday, for months or years, is probably a risky idea.

 

RTG has in my experience got no long lasting effects on tinnitus.What it does have is it gives you time to habituate,thats all you can expect.You meet long term sufferers ,you talk to them ,and they say "i dont hear it any more",how can they say it,but its true if you stop fighting it, ie reactiting,it will fade,If you are suffering now that sounds rediculous ,but its true ,you will on a daily basis cease to hear that awful noise,this will not happen over night,take the long view ,be patient,not easy i know,,stop trying to find an easy fix,good luck

 

Its seems it has helped a few that have posted on this thread and some people by the sounds of it longer term have had relief as well where others have had no relief.

 

@Alue
All the bests pal. Its a tragedy that it seems to be a choice between the devil and the deep blue sea.
I also have RTG in my drawer but didn't dare yet.
Though I have to say this condition is so horrible sometimes...I wanna get out of hell and just let the blue sea take me

 

I would take trobalt at your own risk, say a last line drug. It caused me to get Visual snow. I thought they were floaters, but sadly they weren't. But my t is low hyperacusis gone, so I guess it was a trade off. Anyway, take at your own risk.

 

@Danny Boy how long have you been on this shit ? You Sir are fearless

 

I only take it in emergencies.

 

hello my friends, from the very same day I read in this forum someone had floaters i noticed more of mine and since then annoy me more. I know i always had floaters since child but never annoyed me at all, incredible how brain works, maybe i had some new floaters due to trobalt or stress or who knows, i have no idea, but i think i have just a new one, or maybe old one moved, to the almost center of my left eye
@Danny Boy , you are the only one having visual snow, and who mixed with Gabapentine, do u guys think this is just a coincidence?
i believe the dehydration theory could be true, i remember I woke up with super dry tongue in morning when took trobalt.

Last months i took trobalt very little, something like 100mg/day just 3 days of the week, i have to say looking for its relax effect more than for lowering my T, as it actually doesnt bother me, im quite habituated to it

 

can you go to movie without earplugs ?

 

It gave me pretty severe visual snow too. Very affecting of life quality.

 

Is the visual snow chronic?

 

I'd not take this drug. It's been taken off the market for a reason.

 

In almost every single case it is, yes.

 

We all have it on different levels, I often wonder if this is true for severe T? at one time 20 years ago mine was low and yes learned to live with it just fine, 3-4 months ago it went to severe, from bad drug withdrawal and I wonder if I can do it again at such a debilitating level.

 

I been 2 years now, why got no floaters and visual snow i dont know

 

Problem is that now 31 time my tinnitus went to new level and i cant habituate

 

Did Trobalt cause any of the worsenings or was it other things?

 

Sorry for posting on the wrong thread, how do you obtain trobolt?

 

My tinnitus as well has gotten worse and I have come to the conclusion meds aren't the best thing to use for tinnitus..at least for me...for others meds seem to help!!

 

Interesting video who show how retigabine work

Does Medication Help Tinnitus...

 

@Alue

 

@Alue Are you still taking Trobalt? Has the drug continued to be effect for you? Any side effects?

I'm not sure how old the video above is but it mentions SF0034. Has anyone received any updates on this drug and a clinical trial?

 

Hello there.

Is there any chance that someone can send me a pack of this product? I know, that it has bad side effects but I want to try it and don't know how I can achieve it to get this drug.

I wanna take one pill of 200mg and see how the Tinnitus reacts.

Thanks in advance

 

Hi there, for what it's worth, for my bad days (which were good days 2 years ago - once or twice every 2 weeks) I tried this combo, in one shot:

• Lysanxia (prazepam) 20mg -> Cl channels
• Lamyctal (lamotrigine) 200 mg -> Ca/Na channels
• Trobalt (retigabine) 200 mg -> K channels

Correct me if I'm wrong.

The thing is I'm almost noise free but completely wasted, I can't concentrate on my job (Software architect). So not a long term solution.

BTW, Lamyctal gives me kneels joints and tits (can you believe that? I'm a male !!!!) pains. Lysanxia is great for me, not addictive at all (I 've already stopped it for days whithout the nightmare of Xanax cold turkey).

I've no more second "visible" effects with Trobalt now.