Retigabine (Trobalt, Potiga) — General Discussion

[LetyO]

@papu did you ever experience a spike in your T prior to it going low? The only time it seems to work for me is when I get a spike (20-30 minutes) and profound sedation that my T goes low. With the gabapentin it was the first time in 11 months that my T was gone for the entire day. I did not restart taking Trobalt at 100mg when I got my refill - just went straight to 200mg TID. Do you feel that it works better with time? The longer you take it the better the results or just at higher doses? I get disappointed when it goes back up again.

 

[papu]

Had my 3 am trobalt pill, woke up to a 1/2. Took neurontin at 7 am (600 mg) and again i am at 0/1 (can only hear it with ear plugs and then only softly. Hopefully it will continue like this.

 

[papu]

did you ever experience a spike in your T prior to it going low?

note really I have random spikes usually related to anxiety or stress.

 

[LetyO]

@papu did you ever both together? Why do you take them seperately? Did this happen with a lowe dose of gabapentin? I woke up early with really loud T. Did gabapentin ever decraease your T by itselt? I became upset and took Trobalt 300 mg, listend to music with my earplugs and my T came down to o then went up to to 2. I became sevre.y sedated for about 10 minutes. I am still a bit drunk but functional. I hope the decrease lasts all day like last time.

 

[Stephen Hill]

Others may already have spotted this, but it appears our Retigabine trial on TT has been picked up by some in the academic community, who are calling for a small clinical trial to test its effectiveness with tinnitus:

http://www.ncbi.nlm.nih.gov/m/pubmed/26609769/?i=1&from=tinnitus

Perhaps we should get in touch and offer to help by crowd funding though TT, and other organisations, BTA, etc.?

 

[Dutchy]

I have faith that there will be a drug soon that could alleviate the sharp edges of T for some time.

 

[SkyGift]

Hi
I started Retigabine five days ago with dosage of 300 mg/day (100+100+100)
The loudness of my T is decreased slightly, from 7 or 8/10 to 5 or 6/10.
It really has some effects.
Meanwhile the side effect is Fatigue (Tiredness) and Constipation.
Hope for a soon cure for all T sufferers..
28 Nov. 2015

 

[papu]

@LetyO no I do not take them together seems to me a bit to much so I spaced them in between and I remind you that I just started yesterday with the combination. I think the key is to be consistent with trobalt taper up slowly to something between 900 and 1200 per day divided in three. Stopping and starting or just popping one whenever the tinnitus is high is simply not going to work you have to commit at least for 3 to 4 months

 

[LetyO]

@papu I tapered up slowly when I first started, increasing by 50 mg every week. Most of the time I took it an empty stomach with virtually no side effects - maybe just a little more tired on some days. When I began to run low on my supply I tapered down over 1 1/2 weeks. I had been off RTG for about 2 weeks before starting again. This time I began at 200 mg and definitely did feel the side effects of the sedation, insomnia and constipation right away. I try not to take on an empty stomach anymore. This morning was the first time I took 300 mg (I took the extra 100mg only 10 minutes after the 200 mg). My T has been low so far today but slowly increasing. The first time on Trobalt I did not feel much if any improvement with my T. This time it has changed within 2 days of starting at the 200 mg dose. Did you get improvement right away or after several weeks? I guess I could read user experience but if I remember correctly most who experienced improvement had been on it a short time. I will be comitted to using it for 3-4 months or longer if needed. Thank you for your response. I'm relatively new at this and could definitely benefit from your experience.

 

[valeri]

Others may already have spotted this, but it appears our Retigabine trial on TT has been picked up by some in the academic community, who are calling for a small clinical trial to test its effectiveness with tinnitus:

http://www.ncbi.nlm.nih.gov/m/pubmed/26609769/?i=1&from=tinnitus

Perhaps we should get in touch and offer to help by crowd funding though TT, and other organisations, BTA, etc.?

@attheedgeofscience could probably shed some light on this info

 

[RaZaH]

I started yesterday , was a horrible day so perfect for starting , I started late in the day so I took two 100 mg during the day , one 100mg at a time though Went to the pool as well which always help me a lot . Had a pretty good day after that , went early to sleep . Waking up is always horrible to say the least , this morning was ok .

By now I know that T is so utterly random and sooo easy to make false assumptions but I think it helps.
Ongoing....

 

[LetyO]

On my sixth day of taking Trobalt with Gabpentin. I've had five days of T being in the 0-2 range. I still wake up with T being 7-8. This morning it was a little lower, not as bad. I get moderate sedation, constipation and headache but I can live with that. The headache shifts from side to side, yesterday on the left today on the right. My T usually a 8/9 and has rarely ever been less than a 7/8 for the last 11 months. I pray that after taking this for the next few months it will stay low. This combination seems to be working for me. Each on its own had very little effect. I will post on user experiences in a couple of days. By the way, any little improvement I had in the begining was random. Maybe I did not stay on it long enough before my supply ran out. When I had to taper down to low supply I, noticed a consistent improvement. My T did start to go up gradually on the last couple of days before I ran out.

 

[nills]

@papu @LetyO how do you feel the combination affecting your behaviour and sense of reality? ...

 

[papu]

@nills

I am back to the regular cycle (only trobal 300 mg × 3). This is my conclusion, the two times that I have introduced neurontin into the mix I spent about a day to a day and a half with beautiful zero or almost zero. Yesterday night I went walking just to hear night sounds without that hateful altough a lot LOWER since taking trobalt eeeeeeeeeeeeeeeee. I am back to regular cycle because even taking neurontin my T goes low sometimes for hours sometimes for just and hour and then back to my New base 3, just as with just trobalt. I will use neurontin again as a side med for special ocassions (hopefully I will have the same effecect). I hope that answers your question.

No I did not feel any mood enhancing or sense of reality altering effect alhough having a zero for so many hours made me and my wife very happy.

 

[Bertman]

@nills

I am back to the regular cycle (only trobal 300 mg × 3). This is my conclusion, the two times that I have introduced neurontin into the mix I spent about a day to a day and a half with beautiful zero or almost zero. Yesterday night I went walking just to hear night sounds without that hateful altough a lot LOWER since taking trobalt eeeeeeeeeeeeeeeee. I am back to regular cycle because even taking neurontin my T goes low sometimes for hours sometimes for just and hour and then back to my New base 3, just as with just trobalt. I will use neurontin again as a side med for special ocassions (hopefully I will have the same effecect). I hope that answers your question.

No I did not feel any mood enhancing or sense of reality altering effect alhough having a zero for so many hours made me and my wife very happy.

Thats awesome news, having a bit of a sense of control over T must feel wonderful! Hope it keeps working for you.

 

[LetyO]

@nills to answer your question while taking Trobalt I have noticed a significant decrease in anxiety and I feel much calmer. When I had to taper off the anxiety returned although much less than before. I believe that it has some mood altering effects for the better in my case. I have not experienced any mania or manic episodes. My reality has not been altered. My husband is keeping a close eye on my behavior

 

[LetyO]

@nills i didn't completely answer your question. The only thing the combination does is increase the sedative effect which never happened with Trobalt alone. Otherwise no change in mood and reality as when just taking Trobalt. The neurologist assured me that this will gradually decrease. The only thing that has changed other than sedation is a persistent headache that moves from right to left or central. It's not the kind that is going to respond to NSAIDs.

 

[Juan Carlos]

Hi guys, im a little confused of what to do know.
Last night a took 300mg Trobalt in separate doses. and 200mg Gabapentin at night. When i was in bed for sleeping and also later i was hearing frequencies wich i never heared before, some higher than 4000 and some lower (4k is main T frequency), so i was thinking Neurontin is some ototoxic drug. this frequencies were coming and going.. and at some times got silence with a strange "moving" feeling in my head, wich is normal when im about to sleep due to relaxation.
Well the thing is that this morning i woke up with a level of 0.5 I would say, very close to silence, almost nothing.

So not sure if continue taking this combo, but i thing that probably i will try again because the final result was very good, not as the "way". Im wondering what does mean that other frequencies that i heard. Everybody even "healthy" hear some frequencies for seconds, some say this is like a "reset" so maybe thats what neurontin forces? or its just because its ototoxic, but trobalt acts like a protection? any ideas? anyone experienced the same? Albertus told be had a similat experience but with huge spike and without the good final result
When i took Neurontin alone i also had worse tinnitus, so its not a "combo" thing, its something from neurontin for sure. Anyways if thats temporary as i have experienced i guess i shouldn't worry about it

 

[derpytia]

Okay that's it. How did anyone in the US get their hands on Trobalt? What doctor did you see, what did you say to convince them, or who got it for you and how did you get it through customs? Cause I'm ready to try this stuff cause I have no other way.

 

[RaZaH]

Last night was beyond awesome , went to sleep with 0.1/10 , never experienced that before....ever.
I did have a weird experience though, I have a bathroom fan that makes an annoying screech and after I went to shut it off I could still hear that weird screech for about 10 minutes after , super strange .
Woke up to my usual horror though , just had some food ...going for another dose of trobalt.

This is day three so dont go running after Trobalt based on my experiences yet

 

[Juan Carlos]

Last night was beyond awesome , went to sleep with 0.1/10 , never experienced that before....ever.
I did have a weird experience though, I have a bathroom fan that makes an annoying screech and after I went to shut it off I could still hear that weird screech for about 10 minutes after , super strange .
Woke up to my usual horror though , just had some food ...going for another dose of trobalt.

This is day three so dont go running after Trobalt based on my experiences yet

I had this same experience one year ago ONLY when i took 400mg in a single dose.

I played some krikets from my iPad to check what was the minium masking level. So well after turning OFF the volume to 0, i was still hearing the same crickets (never had this sound as tinnitus) so funny LoL xD

also i realized that with high doses, you may have sound-allucinations, specially if u go to bed turn all off. its like when you are thinking and voices come to you, you are not able to distingish if its your mind as sound very realistic, really weird

 

[RaZaH]

Its like your brain insists on having an annoying sound going all the time.
Having said that , silence is indeed a weird experience and I feel that my brain is desperately searching for it , like something is missing ? Its strange ...or maybe I just find things strange because I am taking trobalt ?

Man .... getting out of your head is the best thing ever and an experience i missed , I took notice of that yesterday , I was simply inflating a tire on my car and realised that i was doing just that ...inflating a tire.
To think that inflating a tire was my best moment for 3 years is ...well ...strange

 

[Bart]

Its like your brain insists on having an annoying sound going all the time.
Having said that , silence is indeed a weird experience and I feel that my brain is desperately searching for it , like something is missing ? Its strange ...or maybe I just find things strange because I am taking trobalt ?

Man .... getting out of your head is the best thing ever and an experience i missed , I took notice of that yesterday , I was simply inflating a tire on my car and realised that i was doing just that ...inflating a tire.
To think that inflating a tire was my best moment for 3 years is ...well ...strange

Do you experience any side-effects like a dizzy or drunk feeling at that dose ?

 

[RaZaH]

well, I can feel it but no dizzyness or drunk feeling yet , having said that I am now going to work and my work is troubleshooting and schematics ...well see how that goes and how much gear I light on fire.

Obviously my experience is limited.

 

[Juan Carlos]

Its like your brain insists on having an annoying sound going all the time.
Having said that , silence is indeed a weird experience and I feel that my brain is desperately searching for it , like something is missing ? Its strange ...or maybe I just find things strange because I am taking trobalt ?

Man .... getting out of your head is the best thing ever and an experience i missed , I took notice of that yesterday , I was simply inflating a tire on my car and realised that i was doing just that ...inflating a tire.
To think that inflating a tire was my best moment for 3 years is ...well ...strange

well that means either one of two things:
-option 1 You also experience the mood enhancer benefits of trobalt, as i do, and feel happiest man of the world
-option 2 Your life is actually so sad that inflating the wheel was the most productive you did xD

BTW, sorry for off topic, but i was living in Iceland-Reykiavik for 2 weeks, working for midi dot is on 2007 (tinnitus free)

 

[RaZaH]

I would say options 1 , my life is/was pretty awesome

 

[Juan Carlos]

BTW, anyone considered Lyrica (Pregabalin) https://en.wikipedia.org/wiki/Pregabalin ?

Its considered the "better version" or sucesor of Neurontin, so should we give a try in combo with trobalt?, those who experienced benefits should have with this too

 

[linearb]

Okay that's it. How did anyone in the US get their hands on Trobalt? What doctor did you see, what did you say to convince them, or who got it for you and how did you get it through customs? Cause I'm ready to try this stuff cause I have no other way.

I went to the first neurologist I could find who specialized in epilepsy, would take my insurance, and had a wait time of less than a week. I showed up with a printout of parts of this thread and various research abstracts, and just asked for the drug. "I have chronic high frequency noise in my head which I think could be helped by Retigabine, based on what I have read, and I would like to try it." No problem. Your mileage may vary, but, you will probably be the most successful if you can find a doctor with extensive experience prescribing the particular drug you're asking for, which is why I went the neuro route.

If you're close to any major metropolitan area and have decent insurance that doesn't require specific referrals to see specialists, I would be shocked if getting your hands on this drug (or any other drug, really) requires seeing more than 1-2 doctors; overall my 25 year experience with US doctors is that if anything they are too quick to write drugs and generally have given me whatever I've asked for.

Be careful, though; this stuff is a serious drug. It did seem to significantly impact my T, but so far that has not been a compelling enough reason to pursue it; I took only low doses of it for a very short period.

 

[LetyO]

Okay that's it. How did anyone in the US get their hands on Trobalt? What doctor did you see, what did you say to convince them, or who got it for you and how did you get it through customs? Cause I'm ready to try this stuff cause I have no other way.

Any MD can prescribe it. If you have a general practitionert you may want to try that route first. I had to wait 2 months to see a neurologist where I live. If you decide to try, get a written prescription and look up a canadian pharmacy to get it from. Your just need to fill out some information and fax the prescription to them. It takes about 1 1/2 weeks to arrive. Almost one-third the price here in the US. Same stuff - I checked it out with a pharmacist and neurologist. The side effects can be debilitating so make sure when you start you have someone around to support you. Make sure you have regular medical checkups to examine your retina and baseline bloodwork and urinalysis. Hope this helps. Don't try the "combo" at first just Trobalt - just a suggestion. I am so sedated right now - Kids went to school 3 hours ago and still in PJ's, eating my second tamale - makes me really hungry.

 

[RaZaH]

For some reason its not working as well today as yesterday , taken 2x 100mg today , so only just starting out.