Retigabine (Trobalt, Potiga) — General Discussion

I just don't fully understand - agree that hyperacusis is somethng different than Tinnitus. Hyperacusis is caused by Tinnitus. I find myself suffering much more from H in my bad days of loud Tinnitus. They are interconnected. I cannot accept that a drug can eliminate hyperacusis without lowering tinnitus. They are interchangable IMO. So, if a drug cannot lower T, it probably does nothing to your hyperacusis either. Reactive T is just a form of bad T. If it can go away it means the drug can significally limit tinnitus. That been said, if Keppra does nothing to Tinnitus, it probably does nothing at all for us. And, of course, by same reasoning, Retigabine may work for H too.
 
I just don't fully understand - agree that hyperacusis is somethng different than Tinnitus. Hyperacusis is caused by Tinnitus. I find myself suffering much more from H in my bad days of loud Tinnitus. They are interconnected. I cannot accept that a drug can eliminate hyperacusis without lowering tinnitus. They are interchangable IMO. So, if a drug cannot lower T, it probably does nothing to your hyperacusis either. Reactive T is just a form of bad T. If it can go away it means the drug can significally limit tinnitus. That been said, if Keppra does nothing to Tinnitus, it probably does nothing at all for us. And, of course, by same reasoning, Retigabine may work for H too.

i agree, H and T are intertwined. I in fact did not know i had hyperacusis until i took RTG. I just though the pain I was experiencing was simply a part of what tinnitus is. when I took RTG, it sort of isolated and purified the sound, and allowed me to sort of observe it dispassionately with the good mood the drug puts you in, and i think that helped really remove the H. i think H must have some psychological component, but one that is very deep and inscrutable by casual reflection. I was deeply in a state of fear and terror at my T since I got it, and by taking RTG I was able to move past that state of mind.
 
i agree, H and T are intertwined. I in fact did not know i had hyperacusis until i took RTG. I just though the pain I was experiencing was simply a part of what tinnitus is. when I took RTG, it sort of isolated and purified the sound, and allowed me to sort of observe it dispassionately with the good mood the drug puts you in, and i think that helped really remove the H. i think H must have some psychological component, but one that is very deep and inscrutable by casual reflection. I was deeply in a state of fear and terror at my T since I got it, and by taking RTG I was able to move past that state of mind.

Just wanted to add another interconnected component to the list: TTS
http://www.hyperacusis.net/hyperacusis/tensor+tympani+syndrome/default.asp

So we have some interconnected syndromes:
-Tinnitus
-Hiperacusis
-TTS
-FEAR, depression, emotional state

In a "healthy" person Tensor Tympany Muscle works of course, but works only in some specific situations
-When someone is exposed to a loud sound: It protects the ear
-When someone is suddently scared, you dont need loud sound to be scared and the muscle can be triggered

When we have T most of times we become in state of constant fear, added to the H, the TTM is triggered so easily. All the area of auditory cortex is hyper activated and a minium stimulous is enought to activate the muscle. I myself reached to point that it triggers just when i touch my face or i shave, you can know it because you listen it, is a strange sound inside your ear(like a pop-unpop). Some people dont know about TTS and think is the same that Hyperacusis, but IMHO its two different thinks, but very related.
When i was on RTG trip it totally disappeared (as fear did), and came a little back when i tapered off.

Now with Keppra im feeling that my H is starting to go away but is still not totally gone, i feel like Keppra works in different way than RTG. while RTG you feel all its power in the first pill you take in 40 minutes, maybe Keppra needs some time to build in.

Now comes my "imaginary" part of this post. Well you know when you have strong pain in a teeth, this pain kind of "expands" the the head, therefore you finally end having head ache.
Well i think with tinnitus happens something similar, the area of the Tinnitus, Hyperacusis and TTS and very close in the brain, so thats why these symtoms are very realted, even you can find people with T and no H and H and no T, but most of us have both. The hyperactivity responisble of T, expands to the areas in the brain causing H and TTS because they're very close. Analogy, T will be teeth pain, and H will be head ache. when the pain starts to go away, first will do the headache and later the teeth, wich was the original cause and stronger one. So I think same will happen when comes to cure T, i think first symptom of curing T is cure the H (and TTS) and later T will be cured. That what most of us experiencied with RTG, we got totally rid of H and partially rid of T.

Apparently, Keppra is more targeted KV channels to a subtype of kv3.1, and not the so-spread KV7 channels of Trobalt. So thats why it erradicated the H without affecting the T while Trobalt affect boths. But i think its a good step to start beating T, because curing H is part of the process even if we dont feel a real change in T volume, its part of the "Tinnitus Pack". Thats why i also think is a good idea to take Trobalt and Keppra together.
 
Apparently, Keppra is more targeted KV channels to a subtype of kv3.1, and not the so-spread KV7 channels of Trobalt. So thats why it erradicated the H without affecting the T while Trobalt affect boths. But i think its a good step to start beating T, because curing H is part of the process even if we dont feel a real change in T volume, its part of the "Tinnitus Pack". Thats why i also think is a good idea to take Trobalt and Keppra together.

Trobalt only works on Kv7 channels, it does not work on Kv3, or any other K channels. I only ever read one paper which briefly mentioned that it has some slight effect on Kv3 channels, but not in any meaningful way.
 
Have done 2 days of trobalt starting at 150mg. Then 2 days @ 200mg. Then today started 2 days @ 250mg. This might be a bit quick...

The first pill really whacked me. The high and insight was amazing (happy up) and harrowing (sad down) at the same time. T dropped from a 7 to a 2 left ear and right to 0. Stayed for 5 minutes. Laughed so hard. Was in wonder with the world. Stayed kind of in a "wonky" high (not a good high but that might just be me) for the first 150mg run (2 days) whenever i took a pill. Memory really bad. But not as intense as first pill. And no drop in T after that first pill of 150mg. Battle to type and remember things whilst on it.

Up to 200mg, not so high this time and no drop in T. Kidneys started hurting. I'm drinking lots of water. At least 2l per day. So now I am worried. Had blood test for kidneys before starting. Doc told me all good at beginning of self-trial so i have a baseline to start my experiment. Did anyone else have this pain? Just under rib cage back and front? Peeing a lot from so much water I am drinking. Neck clicking and headache. Was dizzy when i took the first 250mg.

Today tho at 3pm when i went up to 250mg. Really high. T went right down. Right side zero T. Left @ say 2. But then T came right back up after 15 mins. 15 minute period of almost silence, joy came back into my life. I was back to the person I was before tinnitus. High on life. Self-confidence and beaming happy. It was incredible. Insight streaming to me. Then down. The T i would now say is at a 9. Which is worrying.

I hope none of this is permanent. Sore kidneys and louder T. Makes we want to start tapering off now. Plus hypercusis is worse.

Member suggested I am tapering up too quick. Every 2 days going up 150mg. Insert says 150m every week.

Dr suggested i get to the max dosage as quick as possible tho where t comes down and stay at that dosage but maybe why such bad side effects. Maybe I need to change dosing schedule.

Any thoughts or anyone had these bad side effects?
Really hoping for a 3 - 4 month trial with lasting effects of lowered t.
 
Any thoughts or anyone had these bad side effects?
Really hoping for a 3 - 4 month trial with lasting effects of lowered t.

I also had some slight kidney pain when I started using Trobalt. I remember it went away after 3-4 days, never bothered me again.
Urinary retention lasted a bit longer, maybe 10 days then all back to normal again.
 
Have done 2 days of trobalt starting at 150mg. Then 2 days @ 200mg. Then today started 2 days @ 250mg. This might be a bit quick...

The first pill really whacked me. The high and insight was amazing (happy up) and harrowing (sad down) at the same time. T dropped from a 7 to a 2 left ear and right to 0. Stayed for 5 minutes. Laughed so hard. Was in wonder with the world. Stayed kind of in a "wonky" high (not a good high but that might just be me) for the first 150mg run (2 days) whenever i took a pill. Memory really bad. But not as intense as first pill. And no drop in T after that first pill of 150mg. Battle to type and remember things whilst on it.

Up to 200mg, not so high this time and no drop in T. Kidneys started hurting. I'm drinking lots of water. At least 2l per day. So now I am worried. Had blood test for kidneys before starting. Doc told me all good at beginning of self-trial so i have a baseline to start my experiment. Did anyone else have this pain? Just under rib cage back and front? Peeing a lot from so much water I am drinking. Neck clicking and headache. Was dizzy when i took the first 250mg.

Today tho at 3pm when i went up to 250mg. Really high. T went right down. Right side zero T. Left @ say 2. But then T came right back up after 15 mins. 15 minute period of almost silence, joy came back into my life. I was back to the person I was before tinnitus. High on life. Self-confidence and beaming happy. It was incredible. Insight streaming to me. Then down. The T i would now say is at a 9. Which is worrying.

I hope none of this is permanent. Sore kidneys and louder T. Makes we want to start tapering off now. Plus hypercusis is worse.

Member suggested I am tapering up too quick. Every 2 days going up 150mg. Insert says 150m every week.

Dr suggested i get to the max dosage as quick as possible tho where t comes down and stay at that dosage but maybe why such bad side effects. Maybe I need to change dosing schedule.

Any thoughts or anyone had these bad side effects?
Really hoping for a 3 - 4 month trial with lasting effects of lowered t.
I don`t see any reason why you should taper up so quick ... you can do it quicker than suggested but you have to remember that this drug works on your brain ... it will help open pathways that were blocked and increase flow in pathways that are already open ... it works on various channels so it will influence different systems in your body (especially heart!) ... now why would you want to mess up your system by going so fast?? ... your body is clearly reacting to it by sending signals.

btw - what do you mean when you say starting 150?

first day 3x150 =450
second day 3x200 = 600
third day 3x250=750

If so you should be whacked in the back of your head :) ... seriously dude .. if this is how you do it you are starting from a dose suggested to reach in week 2 and jumping and the third day to a dose you should reach in week 4 or 5 ...

It is a bit too cautious to follow the label so I heard ... but what you are doing is just .. I don`t know, we should invent a word for it ...

:dohanimation:
 
@nills @Juan Carlos ive been noticing a little of the keppra im hoping it is improving like in little situations i dont react as hard as i use to but still got a ways to go. i recently got fulness and a spike two nights ago, im not sure if it was from the keppra or cause we just turned on our ac unit and was really cold inside ive been trying to figure out why it did that. ive still been taking the keppra and it hasnt spiked it or fullness hasnt happened after the first time idk if it was the weather change. but i can feel the keppra working a little so far..
 
Dr suggested i get to the max dosage as quick as possible tho where t comes down and stay at that dosage but maybe why such bad side effects.

i agree with your doctor. stay the course. the side effects aren't that bad and i seriously doubt anything is wrong with your kidneys (maybe you are drinking too much water). you will start to tolerate it better towards the end of the second week. and then you should only be on this for a few months after that so it is just a short time on it. are you taking this 250mg three times a day, or just one pill for one day?
 
Have done 2 days of trobalt starting at 150mg. Then 2 days @ 200mg. Then today started 2 days @ 250mg. This might be a bit quick...

The first pill really whacked me. The high and insight was amazing (happy up) and harrowing (sad down) at the same time. T dropped from a 7 to a 2 left ear and right to 0. Stayed for 5 minutes. Laughed so hard. Was in wonder with the world. Stayed kind of in a "wonky" high (not a good high but that might just be me) for the first 150mg run (2 days) whenever i took a pill. Memory really bad. But not as intense as first pill. And no drop in T after that first pill of 150mg. Battle to type and remember things whilst on it.

Up to 200mg, not so high this time and no drop in T. Kidneys started hurting. I'm drinking lots of water. At least 2l per day. So now I am worried. Had blood test for kidneys before starting. Doc told me all good at beginning of self-trial so i have a baseline to start my experiment. Did anyone else have this pain? Just under rib cage back and front? Peeing a lot from so much water I am drinking. Neck clicking and headache. Was dizzy when i took the first 250mg.

Today tho at 3pm when i went up to 250mg. Really high. T went right down. Right side zero T. Left @ say 2. But then T came right back up after 15 mins. 15 minute period of almost silence, joy came back into my life. I was back to the person I was before tinnitus. High on life. Self-confidence and beaming happy. It was incredible. Insight streaming to me. Then down. The T i would now say is at a 9. Which is worrying.

I hope none of this is permanent. Sore kidneys and louder T. Makes we want to start tapering off now. Plus hypercusis is worse.

Member suggested I am tapering up too quick. Every 2 days going up 150mg. Insert says 150m every week.

Dr suggested i get to the max dosage as quick as possible tho where t comes down and stay at that dosage but maybe why such bad side effects. Maybe I need to change dosing schedule.

Any thoughts or anyone had these bad side effects?
Really hoping for a 3 - 4 month trial with lasting effects of lowered t.

you rump up fast, i done this but i during that time did not had long term effect on tinnitus, only 250-300 (250+250+300) after 15-20 days i had long lasting effect...

kidneys can hurt but like someone is stabbing then with needle, several times, not permanently, chest pain can be from IQ interval that trobalt can change so heart jumps sometimes but it is ok ...

dont go up too fast, and it has to be 3 times per day, there is some katalist of trobalt that has to get stable concentration in blood and then it works.

just take it easy... 250 mg is safe at least was for me, much much less amnesia and problems on 250 mg, and after some time you get to be more used to it and manage it better...

also i wanted to put a message for @dan and @Danny Boy about lady who died by eutanasia...

what do you think about it danny

 
I don`t see any reason why you should taper up so quick ... you can do it quicker than suggested but you have to remember that this drug works on your brain ... it will help open pathways that were blocked and increase flow in pathways that are already open ... it works on various channels so it will influence different systems in your body (especially heart!) ... now why would you want to mess up your system by going so fast?? ... your body is clearly reacting to it by sending signals.

btw - what do you mean when you say starting 150?

first day 3x150 =450
second day 3x200 = 600
third day 3x250=750

If so you should be whacked in the back of your head :) ... seriously dude .. if this is how you do it you are starting from a dose suggested to reach in week 2 and jumping and the third day to a dose you should reach in week 4 or 5 ...

It is a bit too cautious to follow the label so I heard ... but what you are doing is just .. I don`t know, we should invent a word for it ...

:dohanimation:
U got the wrong dosage. Here it is:

first day 3x150 =450
2nd day 3x150 =450
3rd day 3x200 = 600
4th day 3x200 = 600
5th day 3x250=750

So whack to the back of your head? Maybe first find out what my actual dosage was if my post was not clear.

And FYI:
Its the advice of the doc to taper up as quick as poss to reach the therapeutic window.
So maybe you want to invent a word form him too? Or are you a doctor?

But obviously the taper is too fast .. which I will discuss with him and change the taper. Less judgement man!
 
i agree with your doctor. stay the course. the side effects aren't that bad and i seriously doubt anything is wrong with your kidneys (maybe you are drinking too much water). you will start to tolerate it better towards the end of the second week. and then you should only be on this for a few months after that so it is just a short time on it. are you taking this 250mg three times a day, or just one pill for one day?
Initial taper was:
first day 3x150 =450
2nd day 3x150 =450
3rd day 3x200 = 600
4th day 3x200 = 600
5th day 3x250=750

But has been too quick. Going with insert taper rather. Side effects VERY alarming, hallucinations, trembling, can't make sense of things. Maybe it worked for you. Diff for everyone hey. Better to take it slow and adjust accordingly to side effects.
 
U got the wrong dosage. Here it is:

first day 3x150 =450
2nd day 3x150 =450
3rd day 3x200 = 600
4th day 3x200 = 600
5th day 3x250=750

So whack to the back of your head? Maybe first find out what my actual dosage was if my post was not clear.

And FYI:
Its the advice of the doc to taper up as quick as poss to reach the therapeutic window.
So maybe you want to invent a word form him too? Or are you a doctor?

But obviously the taper is too fast .. which I will discuss with him and change the taper. Less judgement man!
Ok, no offence meant, I was off by 2 days ... but message understood ... anyway seems it was way to fast. I don`t know what made you change course this drastically after I gave you a very safe dosing plan little time ago. Was it your doctor that adviced you to go this fast??
 
Ok, no offence meant, I was off by 2 days ... but message understood ... anyway seems it was way to fast. I don`t know what made you change course this drastically after I gave you a very safe dosing plan little time ago. Was it your doctor that adviced you to go this fast??
Ok no worries. Yes, tx for recommending doing the dosage plan. Doc was keen to get me up as quick as poss to the dosage where t=0. I've gone down this morning after literally tripping balls last night for 2.5hrs. So today took 100mg 9am and 100mg 3pm. Will taper to recommended dosage rather. It looks like I am def in the category of go slow.
 
you rump up fast, i done this but i during that time did not had long term effect on tinnitus, only 250-300 (250+250+300) after 15-20 days i had long lasting effect...

kidneys can hurt but like someone is stabbing then with needle, several times, not permanently, chest pain can be from IQ interval that trobalt can change so heart jumps sometimes but it is ok ...

dont go up too fast, and it has to be 3 times per day, there is some katalist of trobalt that has to get stable concentration in blood and then it works.

just take it easy... 250 mg is safe at least was for me, much much less amnesia and problems on 250 mg, and after some time you get to be more used to it and manage it better...

also i wanted to put a message for @dan and @Danny Boy about lady who died by eutanasia...

what do you think about it danny


U think amnesia disappears when u taper off? Just wondering if you can have long term brain damage from taking rtg. @locoyeti - did all your senses come back when you came off or when you stabilised on the golden dosage? Anyone else? Otherwise, i might just taper now. It's not worth becoming a forgetful, scattered fool forever because of RTG.
 
U think amnesia disappears when u taper off? Just wondering if you can have long term brain damage from taking rtg. @locoyeti - did all your senses come back when you came off or when you stabilised on the golden dosage? Anyone else? Otherwise, i might just taper now. It's not worth becoming a forgetful, scattered fool forever because of RTG.

its been 4 months since i stopped RTG and all my faculties are 100%. regarding the fast taper, honestly i think you will have side effects for the first week or so just simply from the fact that you are taking this novel drug in your system. i don't think dosage plays as big a role as you think. during and after the second week you will really just get used to the drug and will actually have nice experiences with it. if you feel comfortable taking it slow then go ahead. but in terms of safety i would rather taper up fast, and finish in 2-3 months, rather than take a 1 month long slow taper up which will not have as pronounced a therapeutic effect. i really did not feel anything until i was taking 300mg three times a day, and felt that the taper days before that were just wasted pills/days.

again i must reiterate, you are only taking this for 3 months, it is HIGHLY unlikely to have any negative long term effects on your health. don't be afraid.
 
its been 4 months since i stopped RTG and all my faculties are 100%. regarding the fast taper, honestly i think you will have side effects for the first week or so just simply from the fact that you are taking this novel drug in your system. i don't think dosage plays as big a role as you think. during and after the second week you will really just get used to the drug and will actually have nice experiences with it. if you feel comfortable taking it slow then go ahead. but in terms of safety i would rather taper up fast, and finish in 2-3 months, rather than take a 1 month long slow taper up which will not have as pronounced a therapeutic effect. i really did not feel anything until i was taking 300mg three times a day, and felt that the taper days before that were just wasted pills/days.

again i must reiterate, you are only taking this for 3 months, it is HIGHLY unlikely to have any negative long term effects on your health. don't be afraid.
Yes, maybe slow taper ins`t as important in general as it is to the patients experience. If you feel like your tripping hard from it it might be good to go a bit slower. Also maybe if you take a lot it will have more effect on QT intervals?

So yes, i`m going to go faster too like you suggested .. I feel ok with it physically and mentally and already did almost 2 weeks of low dosing to get my body used to this compound.

Would you feel 3 months is more than enough or might 4 have even better therapeutic effect or long term benefits?
 
Yes, maybe slow taper ins`t as important in general as it is to the patients experience. If you feel like your tripping hard from it it might be good to go a bit slower. Also maybe if you take a lot it will have more effect on QT intervals?

So yes, i`m going to go faster too like you suggested .. I feel ok with it physically and mentally and already did almost 2 weeks of low dosing to get my body used to this compound.

Would you feel 3 months is more than enough or might 4 have even better therapeutic effect or long term benefits?

i'd say more than 6 months and you might be courting the possibilities of long term side effects. this drug has been prescribed and has been used by people for years though, but that is for epilepsy which is much different from T. i chose 3 months, slightly arbitrarily i suppose, but i definitely did not want to be on this drug for more than 6 months. there are some here that are taking it for a long time, and it may very well work out well for them, it's just an unknown risk at this point. i may take another round of this next year in january.
 
i'd say more than 6 months and you might be courting the possibilities of long term side effects. this drug has been prescribed and has been used by people for years though, but that is for epilepsy which is much different from T. i chose 3 months, slightly arbitrarily i suppose, but i definitely did not want to be on this drug for more than 6 months. there are some here that are taking it for a long time, and it may very well work out well for them, it's just an unknown risk at this point. i may take another round of this next year in january.

Did you have any benefit from taking the drug and if so, was it permanent to the extent that it stayed this way when you stopped using it?
 
Did you have any benefit from taking the drug and if so, was it permanent to the extent that it stayed this way when you stopped using it?

yes and yes. please read my user experiences. i am getting a lot of the same questions from people in my inbox. i have done a good job in this thread of documenting my experience with the drug.
 
keppra alone does nothing to T.
trobalt alone does little to T.
If you combine them the result can be total silence or near silence of course temporary but who knows
maybe some permanent effect occurs.. also helps to reduce benzos which are toxic for T.
 
keppra alone does nothing to T.
trobalt alone does little to T.
If you combine them the result can be total silence or near silence of course temporary but who knows
maybe some permanent effect occurs.. also helps to reduce benzos which are toxic for T.
- So how would the amount of ingestion in mg`s and tapering look when you combine the two?
- You still use them both or stopped?
 
@Viking are you better?
i'd say more than 6 months and you might be courting the possibilities of long term side effects. this drug has been prescribed and has been used by people for years though, but that is for epilepsy which is much different from T. i chose 3 months, slightly arbitrarily i suppose, but i definitely did not want to be on this drug for more than 6 months. there are some here that are taking it for a long time, and it may very well work out well for them, it's just an unknown risk at this point. i may take another round of this next year in january.

but those here who use it have 9/10, while you have 3/10, or am i wrong?
 
U think amnesia disappears when u taper off? Just wondering if you can have long term brain damage from taking rtg. @locoyeti - did all your senses come back when you came off or when you stabilised on the golden dosage? Anyone else? Otherwise, i might just taper now. It's not worth becoming a forgetful, scattered fool forever because of RTG.

amnesia disappears if you miss one dosage :D
 
I found this page ... uhm ... read it untill it says - concerns ...

http://treato.com/Keppra,Trobalt/?a=s
You cannot trust that website at all. It's all based on web-searched based on keywords, look, all the result sources are Tinnitus Talk, this same website. They know Tinnitus is a "symptom" itself, and in Trobalt forum we talk a lot about Tinnitus WHY? because it Helps, not because it causes it. but their search engine is not smart enought to know the reason wich this 2 words are so correlated. Have you ever heard of someone whos T raised with Trobalt? never, not even listed in the paper as a side effect of any of the thousands of people involved in the trials for seizures, and they list it even if happens to 1 person of every 1000
 
You cannot trust that website at all. It's all based on web-searched based on keywords, look, all the result sources are Tinnitus Talk, this same website. They know Tinnitus is a "symptom" itself, and in Trobalt forum we talk a lot about Tinnitus WHY? because it Helps, not because it causes it. but their search engine is not smart enought to know the reason wich this 2 words are so correlated. Have you ever heard of someone whos T raised with Trobalt? never, not even listed in the paper as a side effect of any of the thousands of people involved in the trials for seizures, and they list it even if happens to 1 person of every 1000

Agree. That website is next to useless. It is simply an automated bot showing snippets of text and links to the sites they were taken from.

Avoid at all cost.
 

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