Retigabine (Trobalt, Potiga) — General Discussion

[Leon909]

@locoyeti I'm pretty sure that the pills are real. I experienced light to moderate dizziness a couple of times. Speaking from the effects I think that they might be unreliable, but I bought them at a pharmacy in Spain, so I'd think that they gotta be reliable.

I'm at 1200 mg now and will stay on it for a couple days and see how it develops. I'm really surprised because I had expected a lot more side effects (and also effects on the t).

 

[locoyeti]

@locoyeti , @rtwombly , @attheedgeofscience , @Philemon


I have a question, how many days did you stay at 1,2g of trobalt per day during your trial and did you feel big improvements ?

Thanks.

3 weeks. 300mg tid to 400mg tid was marginal improvements experientially, but i was pretty drugged so who knows. but 200mg tid to 300mg tid was a huge difference.

 

[locoyeti]

@locoyeti I'm pretty sure that the pills are real. I experienced light to moderate dizziness a couple of times. Speaking from the effects I think that they might be unreliable, but I bought them at a pharmacy in Spain, so I'd think that they gotta be reliable.

I'm at 1200 mg now and will stay on it for a couple days and see how it develops. I'm really surprised because I had expected a lot more side effects (and also effects on the t).

i'd suggest trying some from a different source just to make sure. this drug is pretty intense, i don't see how any nervous system can escape from feeling something.

 

[Mithrandir]

@locoyeti

I feel the side effects but improvements are not very big & I have it from different sources

 

[Leon909]

@Mithrandir in your user experience you wrote that your t went down from a 6 to a 2. that seems like a big improvement to me, doesn't it?

 

[Mithrandir]

The effect is very quick, and I feel like I come back to my baseline before I had a relapse in november..so that's complicate to quantify my T, I'll wait for the end of my trial to have a better view on my situation

 

[Philemon]

@locoyeti , @rtwombly , @attheedgeofscience , @Philemon


I have a question, how many days did you stay at 1,2g of trobalt per day during your trial and did you feel big improvements ?

Thanks.

During my first round with Trobalt, I took 1200mg a day (400x3) during 4 days. I then had silence experience (T loudness= 0.05 or 0.1/10) that I didn' had with 300mg TID but i also got a lot of variability, meaning that during the afternoon, or at night i could have T= 2/10 or 3/10, so on average it was not better ... At that time, my T was much more stable on average (0,5-1/10) with 300mg TID ... During my second round, I stayed at 400mg TID for longer period of time (like 3-4 weeks), but I didn't feel any real difference with 300mg TID, and anyway my second round with Trobalt didn't gave me so much improvements, it just stabilized my T that was starting to worsen again (it stabilized it at 2/10, or a bit less, on average, and my T still remains the same for now).
Hope this helps

 

[valeri]

Does food have any impact on trobalt efficiency?
I was having a great improvement so I started to eat better (less and no sugar), now I'm going thought the worst time ever.
Does taking pills on an empty stomach make them loose efficacy?

 

[snow86]

No, it actually had the biggest and quickest impact on empty stomach (surely not really healthy). I think you're just getting the roulette random side of trobalt. I experienced all effects with trobalt and low frequency drone t - better for minutes or hours / no effect / worse. It pretty much always let my sounds mutate into different tones. Like machines turned into a beehive noise.
Cool that you finally had some time off from this shite with improvements. Too bad it doesn't work in the long run for extreme t.
@valeri

 

[Joe Bananas]

Well, in around 4 months I will have finish my participation in the AM101 trial and I am determined to give trobalt a try if things do not improve after AM. By then I will be on my 9th month since onset. I have a very close friend who is Doctor and is ready to prescribe me with all the trobalt I need/ask/want. I want to ask you guys how can I proceed with this. I am a 193cms, 90kgs guy. My T is some sort of reactive, most of the time and also mostly unmaskable. It seems sleeping triggers things in here. After waking up things use to be diferent than the day before. I mean T is louder in one ear or pitch has changed or everything is in the brain, etc...
I am really ready to try anything to get rid of this shit. What are your opinions, advices and tips regarding this?
Thanks

 

[valeri]

No, it actually had the biggest and quickest impact on empty stomach (surely not really healthy). I think you're just getting the roulette random side of trobalt. I experienced all effects with trobalt and low frequency drone t - better for minutes or hours / no effect / worse. It pretty much always let my sounds mutate into different tones. Like machines turned into a beehive noise.
Cool that you finally had some time off from this shite with improvements. Too bad it doesn't work in the long run for extreme t.
@valeri

That's what I'm thinking too, maybe time to call it quits.
I had some really great days with total silence but now it's worse than ever.
And just when I though I may be the lucky one who will be helped.
I should have known better when it comes to my luck

 

[Christian78]

Well, in around 4 months I will have finish my participation in the AM101 trial and I am determined to give trobalt a try if things do not improve after AM. By then I will be on my 9th month since onset. I have a very close friend who is Doctor and is ready to prescribe me with all the trobalt I need/ask/want. I want to ask you guys how can I proceed with this. I am a 193cms, 90kgs guy. My T is some sort of reactive, most of the time and also mostly unmaskable. It seems sleeping triggers things in here. After waking up things use to be diferent than the day before. I mean T is louder in one ear or pitch has changed or everything is in the brain, etc...
I am really ready to try anything to get rid of this shit. What are your opinions, advices and tips regarding this?
Thanks

i am 175/75 and 200 mg give me sometimes so many side effects..

 

[Joe Bananas]

i am 175/75 and 200 mg give me sometimes so many side effects..

Thanks for your answer, @Christian78 . As I said I am ready to assume any side effect but, of course, I am looking for the fewers. What's the way to go with this? By how many mg should I start? How many intakes a day? For how long? What side effects did you experienced and which are the most common ones?

 

[Christian78]

Thanks for your answer, @Christian78 . As I said I am ready to assume any side effect but, of course, I am looking for the fewers. What's the way to go with this? By how many mg should I start? How many intakes a day? For how long? What side effects did you experienced and which are the most common ones?

i was not lucky like you today, i got one box in croatia to test and 1x84x100mg, i start 3 day 100, 3 day 200, rest 300

but then i had to lower becouse i spent it and i got from austria on double price 200mg+100mg box, and after 20 day i was without brain but also without tinnitus ( i have strong side effects, makes me real total zombie , walking like drunk, balance, if i crunch i often fall on ass, could not watch movies, vision problems, retina eye changed, made me sleep like a log 10-12h, zomby effect did fade little between dosages. I used 300/250 in morning, then 250 around 17, and 300 when i go sleep, i had to be without ANY sugar in house becouse i would go up from bed and eat, but when i know nothing sweet is there i sleep good)

when pills stopped having any effect i used 400 but no real effect, some days make me blunt, someday it cut peak, now is very bad, I hope over one very special guy hear whom i have to thank a lot I will go after going to belgium bra2n clinick now, I will go also to Stockholm to do FULL SCALE AUDIOMETRY FROM 16 Hz to 16 kHz, full scale not done anywhere where I asked.

So now first Belgium and then Stockholm,and then some tests on lidocaine injections not into by by the Otic ganglion as there is test in Germany by a doctor who is doing it on 300 patients and becouse i have partly TMJ maybe it will help, mut this test is done by injecting 3 ml or mg (ordinary dentist injection) every 3rd day. Many of those people (300 patients) got better percentage is very very high. If not then they will in my country for 75 euro do MRI of neck and head with contrast so we can se about blood flow becouse that can be reason of my lousing hearing.

Here in Sweden health system is VERY BAD and you wait all 6 months, and then some doctor say well i dont think it is tinnitus from blood flow and they deny me MRI. They just say we dont have money. From hearing department they said they dont have tinnitus doctor and they cant do nothing more for me and good buy. From psychiatry they said tinnitus is not their problem even that i do have/had PTSD 15 years ago and they say You are not our patient , good buy. I go to ENT and he scream on me why did I come. He hes sent referral to hearing department that wrote me good bye letter.

No one want to help me. NO one. They just close door and push me out, I go to emergency they send me to psychiatry to lock me up (so I would not kill myself and I beg to be release I cant sleep without noise generator, in room with 4 people in winter in old building that have poor heating so i use 4 blankets, and they come 4 times in night to check that i sleep and that i did do something to myself while others are snoring like russian armors).

Someone can think bad of me but i will say the truth here. I live in Gothenburg in Sweden. We are most segregated city in Sweden. Over river I live in black/arabic part. I know people and I am king, I greet them when there is Bairam on arabic language. They like me. Nice people. BUT this part is gangster area and this is where people kill people, this is part where police don't there to come, this is part where you can have free ride on bus/trum becouse control don't dare to come. @Roger Larsson a friend, when he came to me first time told me that this his first time he crossed the bridge, we are both in 4th decade of life. On other side live Swedes. Apartments are fairly given with big smile but somehow it is hard for immigrant to bet apartment on other side. Swedes are know by big plastic smile and hypocrisy unfortunately. Facts show that. Order by USA that we have to take so many refugees is not Swedish.

But out government lies. They take refugees. Of course there is place to live but there is no money to support and EU don't want to support us. My friend Is chef of immigration service, asylant part, so i will just say as he say. we got 100 000. There are people from africa that will be sent back who dont have right to stay here but as they cant do all job people and decisions they park them on waiting for 2 years until they do interview why did they come, and make decision to send or not send back.

100 000 people came, 60 000 asked that their family join them so add to it 3-5 family members, 60 000*3? 180 000 people more who are not assailants but family reunion, that is 280 000 people. so, no wonder health system is bankrupt, but when you report you report 100 000 immigrants, other came by family reunion. Swedish from best school became now just printing factory of diplomas. I live here and I would move to Germany but I am to sick to work, but i would move just becouse of health care...

 

[linearb]

Does food have any impact on trobalt efficiency?
I was having a great improvement so I started to eat better (less and no sugar), now I'm going thought the worst time ever.
Does taking pills on an empty stomach make them loose efficacy?

this is internet pseudoscience; however, lots of people do claim that there can be a connection between tinnitus and overgrowth of candida in the GI tract, and that candida symptoms can get worse during a die-off period. Yeast feeds on sugar. So, if you have changed your diet to be much lower sugar, then this is one possible explanation?

 

[Christian78]

this is internet pseudoscience; however, lots of people do claim that there can be a connection between tinnitus and overgrowth of candida in the GI tract, and that candida symptoms can get worse during a die-off period. Yeast feeds on sugar. So, if you have changed your diet to be much lower sugar, then this is one possible explanation?

So also we can eat a lot of those useful bacteria??? They eat candida, and we can boods our natural immune system with Echineacea Friggs + multi vitamin/minerals. I red they couse cancer but not tinnitus, @locoyeti , @rtwombly , @attheedgeofscience , @Philemon @Silvio Sabo please give opinion...

Give me funny mark you don't agree, giving agree mark you agree, if you want to comment good.

 

[Genevieve]

@Mpt I am so happy for you and respect what you're doing. After my original post, however, I found additional information that made me reconsider the drug. That information pertains to the FDA's safety sheet about Retigabine. If people want to try the drug, they need to read this sheet. According to the FDA, Retigabine's side effects include turning blue and possible blindness. These side effects are significant and may not be reversible:

http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf​

So, again, I am very happy for you and really the entire tinnitus community. This is great information. And because you've had tinnitus over six months, maybe this class of drugs--potassium channel modulators--will work on us chronic sufferers too! If so, it means that Autifony's drug will work on chronic tinnitus.

Please keep us posted on your recovery and any additional side effects.

The side effects of the trobalt are so scary, why coudn't they find a good treatment for T without so many irreversible side effects? Scientists can send men to the moon, but no one has found yet a cure for Tinnitus who has always existed, it's so unfair

 

[valeri]

9th day of a horrible spike, trobalt not working any more, I'm afraid it made it permanently worse.
My life with this much noise seems very bleek

 

[gintas]

So now first Belgium and then Stockholm,and then some tests on lidocaine injections not into by by the Otic ganglion as there is test in Germany by a doctor who is doing it on 300 patients and becouse i have partly TMJ maybe it will help, mut this test is done by injecting 3 ml or mg (ordinary dentist injection) every 3rd day. Many of those people (300 patients) got better percentage is very very high. If not then they will in my country for 75 euro do MRI of neck and head with contrast so we can se about blood flow becouse that can be reason of my lousing hearing.

Hi Christian, from where did you found about lidocaine injections, about those 300 patients who got better from it ?

 

[valeri]

Has anyone had tinnitus permanently worsened by trobalt?

 

[RaZaH]

, and my T still remains the same for now

Are you off Trobalt ?

 

[RaZaH]

I dont have a lot of side effects except stupidity , having said that I have had an annoying twitch in one eye for 2 weeks now that is driving me mad.

 

[RaZaH]

Btw , if is stick to my regiment of 1200mg a day , I am mostly good .
Deviate from that and my day will be random ...good/bad.
Not looking forward to stopping as I dont believe there will be any longterm benefit.

 

[Philemon]

Are you off Trobalt ?

Yeah, I am off Trobalt, since October (2015)

 

[matt89]

Regarding the effect of Trobalt is there a difference between taking it when T has become chronic and when it's still in the acute phase (within first weeks/three months after on-set)?

 

[canisaz]

Just checking in.. I haven't been on the forum in awhile, as far as tinnitus goes-- I don't have it. Curiously though I started back with a meditation practice and on my third day of silent meditation I started hearing/feeling a low hum in my brain so I stopped cold turkey at that point. The hum wasn't similar to my old tinnitus sound in any way and I haven't heard it in any circumstances since, maybe this is Jastebroff's elusive sound that everyone hears, etc. Hope all

My advice to any of you is to try anything and everything you can, without experimentation there defintiely will never be a tinnitus cure- in fact the belief that there will never be a cure among tinnitus advocates and patients will indeed become a self-fulfilling prophecy. Advocate for yourselves and if you are inclined to donate money for tinnitus, donate directly to the Tinnitus Research Initiative or this site, not certain other organizations that have a legacy of ineptitude and failure

Hi Mpt, how are yoi these days? Still no T? Still on trobalt? Thank you.

 

[RaZaH]

Anyone else had a weird eye twitch ? Driving me nuts , seems to be also starting on my other eye?
I think I am tapering down from this stuff , guess I am not one of the lucky ones..

 

[monacco]

Anyone else had a weird eye twitch ? Driving me nuts , seems to be also starting on my other eye?
I think I am tapering down from this stuff , guess I am not one of the lucky ones..

Yes I had it when I were on trobalt .but not now

 

[linearb]

I've had eye twitches as a result of benzo tolerance/wd, so it could be related to Trobalt's GABA activity.

It's also a typical symptom of magnesium deficiency (which can be provoked by anxiolytic drugs).

 

[Richard zurowski]

All these side affects that trobalt can cause is it realy worth the risk. After all what realy is the long term affects of being on this drug.