Retigabine (Trobalt, Potiga) — General Discussion

#5,311
snow86 said:
Today I had the first direct effect of Trobalt on my Tinnitus.

Some of you know that I have multiple catastrophic T with very loud low frequency sounds that are alternating within themselves all the time (like running engine or something with a rotation / round per Minutes). These sounds really kill me. (Not my emotional state...When my T gets a bit milder...it's like I can breathe again - just wanted to add that to the misplaced discussion above)

So, today im on my 6th day of tapering up on Trobalt. Today im gonna be on 3x200mg.

In the morning I only ate a very small breakfast and took the 200mg.

About 30 minutes later I felt bit dizzy and drunk...then the Tinnitus suddenly started to change.
The Washing Machine sound suddenly became a more mild, different sound and was like pushed into "background" and I could even notice my high pitched old tinnitus which I have had for 8 years, I usually dont notice it over the low frequency machine sounds. I was astonished.
The effect on T lasted about 20 minutes, then the sounds were "normalizing". Right now im having my almost usual T, like 9/10.

About the "drunk" side effect. I dont really like being drunk, especially on alcohol.
But this is somehow different. Its quite okay, im not afraid of that state, at least for now.
After 30-40 minutes the drunken feeling was completely gone.
But I can confirm, it gets a lot harder to write with keyboard and you forget things in the moment. Im not sure how much harder it will be when I've reached 400mg taken at once...but Im gonna find out.

It seems that 200mg can "hit" you...but that depends on how much you ate before taking a pill. 200mg hit me after one bread bun. I just ate lunch, now I dont feeling anything from the last 200mg.
I know, some people wrote about not taking Trobalt on empty stomach. I just wanted to add that.

I can confirm, Trobalt can really do something to your T!
For now im calling it "something". Im not sure how long It can last and if it will have some longer lasting (positive) effect like in Dannys case (on higher dosage of course).
Im sure it also depends on the kind of T you have. But it's worth a try If you have catastrophic T and can't go on living with it like me. Also, there's still Keppra, which im gonny try at some point. (already got it)

It seems to work with Mirtazapine (for now). I wanted to come off it before taking Trobalt, but I can't go through withdrawal right now.

@NiNyu
@Geo
@valeri
@Danny Boy
@dan
@Martin69
@Xorthian
Click to expand...

Now it's the waiting game for Autifony's drug. Glad it's working for you snow! It will help with sleep too, as it'll sedate you.
 
#5,312
Well, as I said, have to wait till im on the larger dosage like you once were. Right now it was more of a short time relief. But its something...And the drunk feeling. It's a bit better than alcohol, not that sluggish.
 
#5,313
snow86 said:
Today I had the first direct effect of Trobalt on my Tinnitus.

Some of you know that I have multiple catastrophic T with very loud low frequency sounds that are alternating within themselves all the time (like running engine or something with a rotation / round per Minutes). These sounds really kill me. (Not my emotional state...When my T gets a bit milder...it's like I can breathe again - just wanted to add that to the misplaced discussion above)

So, today im on my 6th day of tapering up on Trobalt. Today im gonna be on 3x200mg.

In the morning I only ate a very small breakfast and took the 200mg.

About 30 minutes later I felt bit dizzy and drunk...then the Tinnitus suddenly started to change.
The Washing Machine sound suddenly became a more mild, different sound and was like pushed into "background" and I could even notice my high pitched old tinnitus which I have had for 8 years, I usually dont notice it over the low frequency machine sounds. I was astonished.
The effect on T lasted about 20 minutes, then the sounds were "normalizing". Right now im having my almost usual T, like 9/10.

About the "drunk" side effect. I dont really like being drunk, especially on alcohol.
But this is somehow different. Its quite okay, im not afraid of that state, at least for now.
After 30-40 minutes the drunken feeling was completely gone.
But I can confirm, it gets a lot harder to write with keyboard and you forget things in the moment. Im not sure how much harder it will be when I've reached 400mg taken at once...but Im gonna find out.

It seems that 200mg can "hit" you...but that depends on how much you ate before taking a pill. 200mg hit me after one bread bun. I just ate lunch, now I dont feeling anything from the last 200mg.
I know, some people wrote about not taking Trobalt on empty stomach. I just wanted to add that.

I can confirm, Trobalt can really do something to your T!
For now im calling it "something". Im not sure how long It can last and if it will have some longer lasting (positive) effect like in Dannys case (on higher dosage of course).
Im sure it also depends on the kind of T you have. But it's worth a try If you have catastrophic T and can't go on living with it like me. Also, there's still Keppra, which im gonny try at some point. (already got it)

It seems to work with Mirtazapine (for now). I wanted to come off it before taking Trobalt, but I can't go through withdrawal right now.

@NiNyu
@Geo
@valeri
@Danny Boy
@dan
@Martin69
@Xorthian
Click to expand...
Keep at it bro!
 
#5,314
Geo said:
i took 250mg and nothing on T but damn im getting really slow my body feel very slow,i know now what you guys meant on feeling drunk. @Danny Boy did you get like this even when your t didnt change yet. damn this sucks @nills
Click to expand...
Yes, for sure you`r as normal as the rest of us ... I took 300 twice today and although there is change it is not what i hoped for ... I was quit drunk the second time ... bit of confusion and all ... I was riding my bike in town ... with sunglasses of course! ;) If someone would ask me something I think I wouldn`t know how to answer them ... anyway i`m used to these states from being a young hippie so nothing to be scared about ... it comes - it goes.

and the effect on T goes together with the effect of being mellow and happy ... when one goes the other comes and vica versa ...
 
#5,315
nills said:
and the effect on T goes together with the effect of being mellow and happy ... when one goes the other comes and vica versa ...
Click to expand...

Until we have some Kv channel drugs which don't have this same strong psychological effect, it seems pretty hard to sort out what is doing what.

For instance, I know that on a large dose of Clonazepam, my tinnitus becomes very faint and quiet -- and I feel "mellow and happy" -- and to a much more limited degree, if my T is bad and then I force myself to relax by meditating and then using a sauna, as soon as I get to that point of feeling physically "relaxed and euphoric", the volume of my ringing goes down by a chunk (as measured by minimum masking level).
 
#5,316
linearb said:
Until we have some Kv channel drugs which don't have this same strong psychological effect, it seems pretty hard to sort out what is doing what.

For instance, I know that on a large dose of Clonazepam, my tinnitus becomes very faint and quiet -- and I feel "mellow and happy" -- and to a much more limited degree, if my T is bad and then I force myself to relax by meditating and then using a sauna, as soon as I get to that point of feeling physically "relaxed and euphoric", the volume of my ringing goes down by a chunk (as measured by minimum masking level).
Click to expand...
It has to do with serotonin ... when I take MDMA it is pure silent bliss ... not a 2/10 not a 1/10 .. a magical zero!
 
#5,321
nills said:
It has to do with serotonin ... when I take MDMA it is pure silent bliss ... not a 2/10 not a 1/10 .. a magical zero!
Click to expand...
That's interesting. MDMA obliterated my "central" noise / electrical frequencies, without having any impact on the much more "ringy" noise that I hear on the left side. So, I think that for me, these different noises come from different circuits.
 
#5,323
MDMA will never be used as a cure imo ... they can only have more understanding of the mechanisms of Tinnitus through it ... it would be impossible to have MDMA without it`s effects ... the effects are not side effects .. they are essential to it`s reason of use by it`s users .. but when you take it it depletes your serotonin storage ... so you will have a few days of being down after ... yesterday when I raised my dose to 300 I was having some clenching of the jaw like with MDMA ...

they will really need to adress only the part that is responsible for these hyper neurons signals to enter the thalamus/conciounsness ... cut the connection ... in other words ... HIFU ...
 
#5,324
nills said:
MDMA will never be used as a cure imo ... they can only have more understanding of the mechanisms of Tinnitus through it ... it would be impossible to have MDMA without it`s effects ... the effects are not side effects .. they are essential to it`s reason of use by it`s users .. but when you take it it depletes your serotonin storage ... so you will have a few days of being down after ... yesterday when I raised my dose to 300 I was having some clenching of the jaw like with MDMA ...

they will really need to adress only the part that is responsible for these hyper neurons signals to enter the thalamus/conciounsness ... cut the connection ... in other words ... HIFU ...
Click to expand...

Ive used mdma a few times and it never cured or made my tinnitus better
 
#5,325
Danny Boy said:
It's amazing isn't it? Normal people are so, so lucky.
Click to expand...

Hello there Danny just want to ask you. I unfortunately ran out of my trobalt just over a week ago so I can sense another trip to Spain coming on which is where I purchased my last amount as you did I think, I was on about 6oo a day 200x3 and ideally really by the sounds of it I should have got up to 300x3 but didn't really have enough, how much do you think is best to buy in one hit if you want it to last, how much are you on at the moment, and ideallt 300x3 does seem to be a decent amount to get the best effect.

Thank you, Fred
 
#5,328
Freddie said:
Hello there Danny just want to ask you. I unfortunately ran out of my trobalt just over a week ago so I can sense another trip to Spain coming on which is where I purchased my last amount as you did I think, I was on about 6oo a day 200x3 and ideally really by the sounds of it I should have got up to 300x3 but didn't really have enough, how much do you think is best to buy in one hit if you want it to last, how much are you on at the moment, and ideallt 300x3 does seem to be a decent amount to get the best effect.

Thank you, Fred
Click to expand...
did you get relief at 200x3?
 
#5,330
Geo said:
i took 250mg again today but i didnt get the drunk feeling like i did yesterday but i didnt eat before taking yesterday.. i did eat a bread before taking it today so that must be it..
Click to expand...

Geo, they accumulate in blood so dizzy effet get to happen but after 15 days on 250mg you will definitely have to notice effect, not to mention 300+250+250

Sometimes you will get drunk feeling from 200mg dosage, and nothing from 400

( expirice from 1 year of using trobalt)
 
#5,331
Freddie said:
Hello there Danny just want to ask you. I unfortunately ran out of my trobalt just over a week ago so I can sense another trip to Spain coming on which is where I purchased my last amount as you did I think, I was on about 6oo a day 200x3 and ideally really by the sounds of it I should have got up to 300x3 but didn't really have enough, how much do you think is best to buy in one hit if you want it to last, how much are you on at the moment, and ideallt 300x3 does seem to be a decent amount to get the best effect.

Thank you, Fred
Click to expand...

I'm not on trobalt anymore. I was on 400x3. Did 300x3 have an effect on you?
 
#5,332
Freddie said:
Hello there Danny just want to ask you. I unfortunately ran out of my trobalt just over a week ago so I can sense another trip to Spain coming on which is where I purchased my last amount as you did I think, I was on about 6oo a day 200x3 and ideally really by the sounds of it I should have got up to 300x3 but didn't really have enough, how much do you think is best to buy in one hit if you want it to last, how much are you on at the moment, and ideallt 300x3 does seem to be a decent amount to get the best effect.

Thank you, Fred
Click to expand...
I`m on 3x300 ... it`s not enough ... few more days and next week Tuesday or so I will slowly raise to 400 ... I just hope for a continues lowering ... now I`m just having temporary changes and when I come home it`s just as loud as I remember it to be.
 
#5,336
nills said:
like what? don`t remember anything ... except crying at the parking when my doctor refused to prescribe me some more ... I was devastated ...
Click to expand...

That's horrible. Personally, I don't like most doctors as they seem inhumane. They should be allowed to prescribe something off label if it provides a life line to the patient.
 
#5,337
nills said:
I`m on 3x300 ... it`s not enough ... few more days and next week Tuesday or so I will slowly raise to 400 ... I just hope for a continues lowering ... now I`m just having temporary changes and when I come home it`s just as loud as I remember it to be.
Click to expand...
How long time are you on trobalt 250-300?

Geo said:
when you guys @nills @Danny Boy were off trobalt did you get any bad effects like Z'michael did?
Click to expand...
At start i got like dizzy, problem speaking,
as time went i dot problem speaking and behaviour ( i was high) and i openly said people truth in their face (insted hold it for myself and not care)
after i slowly lost emotions, i was not sed or happy, it erase love from me, i was like plant, but tinnitus went down, tinnitus max went down for 80%
then i got little prostata problem, my sleep improved 70%
in weeks that followed i got bed sight on a left eye, but both were affected
i could go to him but my muscles were not so controlled and they were getting too relaxed
dosage 250 made my fingers relaxed so i missed letters

dosage 300 made impossible to spell "small" word like small, i would try to say first is "s" then "e" but i type "f", totally unable, but that last 30min max
i was on 300-400 mg i noticed blood in by usine
i noticed i could not speak especially at all on a peak when it hits me
i developed kidney stones but cant use narcotics for pain, but warm beer without alcohol ,and 4 liter mineral water run out and peed them down (you will notice settings during nights that is sign)

i was diagnose with color change in retina in left eye, they done MRI scans of brain and it was ok
i got often now back pain because i cant train or run because unreliable muscles
when medicine hits peak (i say hit you) after taking it and next 2h i get twitches, nothing special, like someone with a lighter electronic inductor just hit my arm or fingers or legs, but i just dont pay attention on it, there is no pain but that weird sensation.

so

dizzy

blurred vision

kidney stones

bloody urine (that leave permanent stains on toilet seat :(((( it bets brownish, and you will notice on toilet paper it is pinky

taking double time to get organised, get dressed and get out of house

slight retina color change

back pain that wake you up, you must stretch

you will not run any more muscles dont wanna listen, and become gelly

light twitches but strange, nothing fell or brake to me

can not pay attention on 2 things, so be careful if you have mobile and cross street!

problem communicating with your friends when pill hit you

sometimes you will have to lie down (or sit it over 20 min

being happy or high 60% of time

can not get tired, can walk and work like machine

can not have sex, no desire, or you must jump over dosage to get hot

no fillings of love, or lets say get cold 70% (swedish cold) add 10%, and be with person you like but you don't wanna kiss or hug because that is useless waste of time (borg)

love doing what you like to do extremly will make you happy

uncontrollable spending money!!! forget wallet

sugar cravings when you take pill in the evening (take pill when you are in bed, and don't turn on light if you go pee they will wake you and you will go in kitchen

I think i listed 90%, @Danny Boy did not have so much side effect when he was on 3 drugs simultaneously, plus 3 supplements herbal, others i dont know

brown red urine get on 400mg and so on... @snow86

this is my experience now more than a year

Freddie said:
Hello there Danny just want to ask you. I unfortunately ran out of my trobalt just over a week ago so I can sense another trip to Spain coming on which is where I purchased my last amount as you did I think, I was on about 6oo a day 200x3 and ideally really by the sounds of it I should have got up to 300x3 but didn't really have enough, how much do you think is best to buy in one hit if you want it to last, how much are you on at the moment, and ideallt 300x3 does seem to be a decent amount to get the best effect.

Thank you, Fred
Click to expand...
i forcefully stopped trobalt

i got strange neurological sensation like milion ans all over body, day by day, legs first, then lower leg , than hands, then back, than part of face then bit head, and restless leg syndrome (totally look like it and IF TROBALT IS CUT LIKE THAT YOU CAN PERMANENTLY GET RESTLESS LEG SYNDROME I GOT CONFIRMED FROM GSK BECAUSE I WAS AFRAID AND HAD TO CALL THEM)

So no 300-400 then 0 just like that!!!

nills said:
like what? don`t remember anything ... except crying at the parking when my doctor refused to prescribe me some more ... I was devastated ...
Click to expand...
well i found a psychiatrist in Sweden who is willing to prescribe it off label! he said if you believe it can help you can get it, and off course you need diagnose like ptsd, tinnitus, depression, social phobia, anything to get to psychiatry. tinnitus all is not enough.

nills said:
It has to do with serotonin ... when I take MDMA it is pure silent bliss ... not a 2/10 not a 1/10 .. a magical zero!
Click to expand...
you take just one pill and no T?

Geo said:
damn thats kinda quick did u get side effects? what dose worked for you i mean i which does did you feel change
Click to expand...
I done like mpt i did not had luxury of doing it slowly :(

1-3 day 100mg x3
4-6 200mg x3
7th on 250-300
then fell on 250 i felt best there for 4 months and my t want to point i could not hear it in soundproof room
 
#5,338
Christian78 said:
At start i got like dizzy, problem speaking,
as time went i dot problem speaking and behaviour ( i was high) and i openly said people truth in their face (insted hold it for myself and not care)
after i slowly lost emotions, i was not sed or happy, it erase love from me, i was like plant, but tinnitus went down, tinnitus max went down for 80%
then i got little prostata problem, my sleep improved 70%
in weeks that followed i got bed sight on a left eye, but both were affected
i could go to him but my muscles were not so controlled and they were getting too relaxed
dosage 250 made my fingers relaxed so i missed letters

dosage 300 made impossible to spell "small" word like small, i would try to say first is "s" then "e" but i type "f", totally unable, but that last 30min max
i was on 300-400 mg i noticed blood in by usine
i noticed i could not speak especially at all on a peak when it hits me
i developed kidney stones but cant use narcotics for pain, but warm beer without alcohol ,and 4 liter mineral water run out and peed them down (you will notice settings during nights that is sign)

i was diagnose with color change in retina in left eye, they done MRI scans of brain and it was ok
i got often now back pain because i cant train or run because unreliable muscles
when medicine hits peak (i say hit you) after taking it and next 2h i get twitches, nothing special, like someone with a lighter electronic inductor just hit my arm or fingers or legs, but i just dont pay attention on it, there is no pain but that weird sensation.

so

dizzy

blurred vision

kidney stones

bloody urine (that leave permanent stains on toilet seat :(((( it bets brownish, and you will notice on toilet paper it is pinky

taking double time to get organised, get dressed and get out of house

slight retina color change

back pain that wake you up, you must stretch

you will not run any more muscles dont wanna listen, and become gelly

light twitches but strange, nothing fell or brake to me

can not pay attention on 2 things, so be careful if you have mobile and cross street!

problem communicating with your friends when pill hit you

sometimes you will have to lie down (or sit it over 20 min

being happy or high 60% of time

can not get tired, can walk and work like machine

can not have sex, no desire, or you must jump over dosage to get hot

no fillings of love, or lets say get cold 70% (swedish cold) add 10%, and be with person you like but you don't wanna kiss or hug because that is useless waste of time (borg)

love doing what you like to do extremly will make you happy

uncontrollable spending money!!! forget wallet

sugar cravings when you take pill in the evening (take pill when you are in bed, and don't turn on light if you go pee they will wake you and you will go in kitchen

I think i listed 90%, @Danny Boy did not have so much side effect when he was on 3 drugs simultaneously, plus 3 supplements herbal, others i dont know

brown red urine get on 400mg and so on... @snow86

this is my experience now more than a year

i forcefully stopped trobalt

i got strange neurological sensation like milion ans all over body, day by day, legs first, then lower leg , than hands, then back, than part of face then bit head, and restless leg syndrome (totally look like it and IF TROBALT IS CUT LIKE THAT YOU CAN PERMANENTLY GET RESTLESS LEG SYNDROME I GOT CONFIRMED FROM GSK BECAUSE I WAS AFRAID AND HAD TO CALL THEM)

So no 300-400 then 0 just like that!!!
Click to expand...

That's odd? I just stopped taking trobalt and nothing happened? Scary stuff though.
 
#5,340
I found this- https://www.medicines.org.uk/emc/medicine/24527

In a study in volunteers, cardiac arrhythmia (cardiac arrest/asystole or ventricular tachycardia) occurred in two subjects within 3 hours of receiving a single 900 mg retigabine dose. The arrhythmias spontaneously resolved, and both volunteers recovered without sequelae.

I did a 1,200mg single dose and nothing happened to me!? Jesus...

Withdrawal seizures

As with other antiepileptic drugs, Trobalt must be withdrawn gradually to minimise the potential for rebound seizures. It is recommended that the Trobalt dose is reduced over a period of at least 3 weeks, unless safety concerns require an abrupt withdrawal.

So withdrawal would be 300mg one week, 200mg one week and 100mg one week and stop.
 

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