Retigabine (Trobalt, Potiga) — General Discussion

i think the only one who got worse while taking trobalt was @Christian78 , it doesn't mean that trobalt was the cause
other day i took 100mg of Gabapentin alone, no improve, i would say maybe got temporary worse,
This week will combine with trobalt and see.. I bought in spain without prescription, its quite cheap 4€

 

@Juan Carlos , have you been trying trobalt for long ? Any results?

 

one year ago, it was 5 months or so. i think it got better, from 3 to 2 i would say. now i use like aspirin some days. dose of 200 or 300 always lowers my T

 

I agree, or atleast some kind of tag which is easy to search from Trobalt-experiences thread.

 

Everyone feel welcome to send the conclusions in a private conversation and we'll set it up as a resource tab in the user experiences thread.

Besides positive, also neutral and negative conclusions should be sent to us.

Title the conversation Retigabine User Experience Conclusion.

Thanks.

 

In the user experience thread, there is now a "User Experience Conclusions" tab, where the conclusions will be listed as seen below:

 

Excellent !

MAy I suggest that conclusions include , duration of T before Trobalt - Time on Trobalt - T levels before , during and after Trobalt.

 

. . . and how long any improvement lasted after stopping the course of treatment and whether people have taken Trobalt on a 'as and when needed' basis since stopping the full on course of treatment.

 

For some people T settles down a bit when taking a Benzo ,I have yet to understand if Trobalt is much different.

 

Retygabine+ some alcohol is good but it will kill me in future.... I don't know what I should do with it... I was very happy in past, but now my life is tragedy... I have 30 years old....

 

Why my post is cancel?

 

Sorry, I don't see his yet...

 

Thanks for the reply,

I wonder if Christians t got worse or just back to pre-Trobalt levels.

And if I recall correctly he is taking a bunch of other stuff as well so maybe that cocktail has something to do with it, i apologise to @Christian78 if this is incorrect.

 

Completly different. I have taken clonazepan in a very very few ocassions and in my case you only relax and go to sleep. Tinnitus still there just that you dont care as much. With trobalt my experience has been different, first i am alert not sleepy, i feel literally my tinnitus completly go to zero (even pluggin my ears) and stay there or very low (1 or 2 ) for hours. In average in two months its gone from 7 to a 1 or 2 and stays there for almost all of the day with a few ocassional spikes up to 5 and only for up to an hour when they come. I do not consider myself cured but i am much better off than 2 months ago.

 

@papu and are you still on Trobalt ?

 

i paste my conclusions here besides sending to Markku

My conclusions about trobalt:

I was taking trobalt around 4 month continuosly at maximum dose of 800mg per day (300+300+200).
First, I expose the fact of wich Im sure, and later the fact wich im not notally sure
-Trobalt lowers the T level for around 40-60 minutes after taking the pill, no doubt about this.
-Trobalt arradicates hyperacusis after some time taking it, no doubt about this
-Trobalt totally protects you agains a accoustic trauma if you take it before it. For example I took it before going to loud pub and T didn't raise as it would if I didn't take it
-Trobalt also eliminates the high sensibility to loud sounds, as I experienced when took before going to the pub
-Trobalt helps for habituation and forget to think about T all the time. BUT if you are already habituated, you may feel that you are more aware of your T when you take trobalt. If somone know what is Low Latent Inhibition (you can google it), I belive Trobalt lowers the latent inhibition a lot. Read my user experiences posts for details

-Experience after Trobalt: All side effects disappeared (see user experiences). T was a little higher during first 2 weeks off-troablt and later came much lower, lower than before trobalt

Now, fact wich I believe but im not 100% sure
-Trobalt can lower the T level permanently in some cases after long term intake, let say for some months, taking everyday
-Trobalt actually helps but its not a miracle pill, so dont stop doing anything else that you think could help your T level, like control stress or avoid loud sounds or control good intake
-I would rate my permanent improvement as my T went from a level 3 to level 2 on 10 scale. Its not a big improvement, but its an improvement and nothing else in this world seemed to improve my T. If it wasn't for the listed long-term effects regarding skin, nails, lips decoloration i would do another roundtrip of trobalt until T is gone. I didn't have ant of those effects. Seems to happen when taken more than 2-3 years continuosly on maximum dose (600 to 1200mg/day)
-Considering the brain plasticity being the way to improve T, i think we need a "slow release" version of trobalt, as with current version, i get lower T for 40 minutes after take pill, that happened 3 times a day so it means 2 hours per day of lower T, 2 hours of 24 is not that much, so thats why the permanent improvement of T level with Trobalt is rather slow. If we had a drug wich could lower T for longer time after every pill I belive permanent cure would be achieve must faster, near a rate of 1/1 of T onset, for example, someone with 1 year old T would be cured in less than 1 year
-Other users (DannyBoy) had longer effect than me, and he had much bigger improvement than me. I seem to eliminate the drug from my blood faster than others
-Besides the direct effect of Troablt on the T level, I believe Trobalt also helps in another ways, specially on stress-realted T like mine. Trobalt makes a sedating effect on brain that erradicates any sing of stress and this indirectly also helps to lower the T level.
-Taking trobalt together with Keppra seems to potentiate its level, but im not sure 100% as every time is different. Other users also reported that its more powerfull mixed with Keppra


Also worth to mention: its very tricky to rate the T level. Most people and me included get a "cleaned" version of their T after taking the pills. For example I had a main frequency around 4000Hz and some noise in the near frequencies. After taking 200 or 300mg i got a cleaned pure tone at 4000Hz on my right ear and silence on left ear, this sound is actually lower than the original T, but as its just "different" for some people may have the feeling that they T has increased, but its the oposite. Sounds and feeling are very connected so try to rate the T the most objective posible way. That means use a devide to mask it and find the minium level to mask always in the same device and sound. People get used to a sound and if its changed they would get scared or alerted even if its lower


Now this is a personal question i wonder myself. Brain is a net of neurons, all are connected and the connections become stronger everytime if they are repeated, thats how "learing" works, repeating. If i get stressed my T level raises, now i wonder if there is some kind of shortcut between some areas my brain stress-related and auditory cortex, or its simply that the auditory cortex is over-excited. In both theory-cases trobalt would work because it works at most KV potassium channels 7.2 to 7.5 but the effect is temporary while i get "high" by the drug, as it open the KV doors. So for permanent cure would look more suitable a drug wich aims only the auditory cortex or this "shortcut" between brain and auditory cortex paths

Some other data:
-T age before Trobalt: 9 months
-Trobalt duration: 4 month max dose + 2 of taper up/down
-Level Before Trobalt: 3
-Level After Trobalt: 2

 

@RaZaH

Yes started new batch in tuesday of last week (november 3). Although i was very low two weeks after stoping cold turkey (ran out of them) i still think that if i take it for at least as many months since my acoustic trauma i might be able to make it all go away not just a 1 or 2 like now.

 

SF0034 hopefully

 

@Juan Carlos exactly the kind of summary I was looking for, thank you sooo much !

As a sidenote , my good days are the ca 4 khz T , 80% of the time its the bad kind , ca17khz and incredible head buzzz.
I can only hope that Trobalt works on that as well, in fact the physical head buzz is the absolute worst.

Actually I might need to get my head checked out ...mornings are insane ...more then Tinnitus , my head is exploding.

 

My job involves reading schematics and troubleshooting ....wonder how I will do on Trobalt?

 

quite quite worse, well some 70% worse from pre trobalt lvl

I use Trobalt, diazepam 2mg, and sleeping pill 5mg, so that is not cocktail, that is benzodiazepines and trobalt

It is nothing so much but i would like to stop trobalt and retry again. I am scared of Neurotonin or what is his name...

trobalt is now 1 year. I was good 4 months and then trobalt lost effect except i let me sleep ok for 7h

 

@papu so its at 1-2 now, what was it before starting Trobalt and do you attribute the current level to Trobalt?

 

He started as a 7/10, you can read his progress on the last page of the user experiences.

 

@RaZaH
I had minimal side effects until I started 300mg. It varies from person to person. Titrate slowly, increasing every 50mg. Whatever side effects I experienced they went away after several days. I have only experienced the "drugged" effect after taking 300mg twice and on different days. Only now am I staring to experience moments of near silence. Good luck!

 

I am just struggling with one more thing,

If this drug is so effective, and apparently it has a positive effect on tinnitus, mine included, why did Autifony fail ?

This made me abit sceptic, but I still want to give it another go...

 

@Christian78

So sorry to hear that, I know it is very hard to do at this stage but please try and taper off completely from Trobalt to see if there is any improvement. You should take this to get better, not to get worse.

I hope you get better soon.

 

Different k channels. Kv7.3 in retigabine kv3 in autifony

The problem with retigabine is that it affects all of the kv 7 subunits (involving heart, eyes and bladder as far as I know) so we need sf00034 is more specific to the ear subunit is more potent and less toxic in that sense.

 

@LetyO this is where I have a slight issue , I will be getting 100mg tablets . I am so sensitive to drugs that I will be a blabbering idiot after 100mg , also there is the question if it is advisable to start at those dosages?

 

@RaZaH
You can purchase a 50 mg tab through a canadian pharmacy with a prescription for about $150 US. You can try dividing the tablet in half but I would ask the pharmacist first (I have a friend who is a pharmacist and I can ask for you). If the medication is evenly distributed in the tablet you can cut it down with a pill splitter. If you are that sensitive you may want to start at 50mg on a day when you are not working to see how it affects you. The insert advises starting at 100mg and gradually titrating up in 50 mg increments but these are the guidlines for epilepsy not tinnitus. Once you overcome the side effects at that dose you can gradually increase. If you are that sensitive then it is possible that you may have an effect at much lower doses.

 

7 and now 1 or 2 and yes i most defineatly think it was trobalt what did the trick