Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

my plan is to skip 1 dosage per day. before i was on 300+300+200 on weekdays (800 in total)
400+400 is also 800 and i think is much more effective
im not missing 3 doses at all. Also nobody proved yet that Tinnitus its a kind of seizures. I dont have spikes, that would be analogue to a seizure attack. Its just a constant hiper-excitability of neurons on the auditory cortex. Seizures i think is something more complicated, that cannot be cured (tratments are for life) and most of times is a genetic-thing

My T has never been above 3/10, thats why i was considering i can be closer to the cure and worth to try Trobalt. Indeed I have an improvement, but slower than expected, anyways its real and 100% sure not placebo
Now I also know more about my T, I know the stages described before. Never thought i could have a pure tone on mi right ear and nothing else. I has been always billateral since its bornt.
With the new schedule is also easier to "life" as im not high at work or something
Dose at 8pm could me problematic well i will take that with 300 in case i have some social appointment..

and Dear @Telis you are the most negative person i can see in this forum, Zimichael and undecided are the ONLY persons that didn't experienced a change on T. Abosolutely all the others had an objetive change on T volume and pattern, so please dont confuse the new members that dont read the whole thread, also you never tried Retigabine and i think you will never try, so I dont know why are you messing on here and confusing other people, try other treatments on wich you may have some hope

Hi!

I think @Telis is in pain and that is why he may become pessimistic. But it is his choice.

I am glad you Juan got improvement. I dont know what went wrong in my. Doctor told me Trobalt is too poverfull drug to get tolerance on short time, maybe after few years. That would mean I have to stop and lose trobalt from blood on few days and then start again slowly.

I am drama queen I scream in agony but I dont give up. I believe Autifony will help. And I know that trobalt at least on lower dosage 200mg gives you a mood improvement. Bad is that we stop caring about loud sounds, and we have to be careful on loud sounds!!!

I will wash out and then I will restart trobalt. Last we days I am on low dosage 150-400 day max. It is because my heart hurt when i was withdrawing, and blood pressure fell to minimal normal.

Anyway I want to believe I am not immune on trobalt. I wonder other people how much did it take for them to get effect. I needed min 12 days on stable dosage to get reaction on tinnitus, i did got side effects, but effect too.

We need to hope

 

[Christian78]

i'm tapering down, i'm at 900mg tid for the last 5 days. side effects, particularly cognitive ones, are drastically reduced, so i can work just fine, and type just fine. the volume is still very low, i don't have any h, and have not had any significant spikes for the last 2-3 weeks. i think i can say that i've had good results with the drug. i think its important to not monitor your t while you are on the drug. if i had to do this all over again, i would have done whatever i could to just go about my day as if nothing was happening. i feel as this drug may be an important tool for habituation, which @Mpt has admitted in another thread may be the ultimate cause of his relief. i hope things don't get worse when i am completely off of it in two weeks. as weird as it may sound, i think a fundamental indifference to the outcome may counterintuitively yield better results. as i am tapering off now, i feel this has been an enlightening experience - i did not get complete cessation but i feel as though i learned exactly what my t is, and i am no longer afraid of it. this may sound a bit zen, but that is how i am currently feeling about it.

I TOTALLY AGREE, DRUG SEEMS TO BE GREAT FOR HABITUATION!!!

 

[Juan Carlos]

yeah well you cannot rely on Trobalt mood improvement for live. It's true that when you are high, even when your T is not totally gone, Trobalt helps you to not think about it and makes you feel more happy and careless (people dont get me wrong you never lose the objetive sight of your T)

Maybe the solution is just around the corner with Keppra. Only Viking is testing, he is chronic case, so maybe is not the best one to test Keppra, we need more testers for ir

Please people not in Trobalt, would love to have more testers for Keppra, it might help

 

[skoupidis]

Indeed, we would appreciate another input, though this whole anticonvulsants medication starts to seem a bit hopeless to me...

 

[Viking]

Indeed, we would appreciate another input, though this whole anticonvulsants medication starts to seem a bit hopeless to me...

I don't wont to offence my friend but try to help you.... in this moment you mustn't think that you are hopeless!!! I know very well how difficult it is, try to have a positive attitude. This will also serve to better address drug therapies! Remember ... there is always a possibility ... that as tinnitus came ... it will disappear .... this is my wish and prayer for all the suffering!
then... FIGHT!

 

[1MW]

I got retigabine for first time 100mg.
Yes it works to relief symptom.
But is works by depression of CNS i have the same feeling like taking low dose benzo.
Works best for HF T especially for very high frequency tinnitus.
I measured i little bit lower hearing maybe 5db at high frequencies.
I does not cure organic problem and can give you more problems
if you don't protect yourself from sounds when you are on retigabine because it relieves hyperacusis
and you think that your hearing is as before.
Maybe this is the reason for worsening some members after retigabine cut off.

 

[Telis]

and Dear @Telis you are the most negative person i can see in this forum, Zimichael and undecided are the ONLY persons that didn't experienced a change on T. Abosolutely all the others had an objetive change on T volume and pattern, so please dont confuse the new members that dont read the whole thread, also you never tried Retigabine and i think you will never try, so I dont know why are you messing on here and confusing other people, try other treatments on wich you may have some hope

Ok sure, so a difference of a opinion makes me negitive? And since I have a different opinion than you I shouldn't be here? That's a very negative aditude in itself, pretty closed minded.

You...please don't confuse new members...and please stop spreading dangerous misinformation!!! As far as I know there is not a single person that had their T measured objectively before and after retigabine. Making statement like this is just plain false (complete BS) and totally misleading:

"Abosolutely all the others had an objetive change on T volume and pattern, so please dont confuse the new members that dont read the whole thread"

If I'm negitive becasue I'm a critical thinker (look at facts, not false statements like the one that you made above) and I'm not a blind optimist, that's great, it's served me very well in life. Thx

 

[stelar]

If I'm negitive becasue I'm a critical thinker (look at facts, not false statements like the one that you made above) and I'm not a blind optimist, that's great, it's served me very well in life. Thx

How is your life today ?

 

[Christian78]

yeah well you cannot rely on Trobalt mood improvement for live. It's true that when you are high, even when your T is not totally gone, Trobalt helps you to not think about it and makes you feel more happy and careless (people dont get me wrong you never lose the objetive sight of your T)

Maybe the solution is just around the corner with Keppra. Only Viking is testing, he is chronic case, so maybe is not the best one to test Keppra, we need more testers for ir

Please people not in Trobalt, would love to have more testers for Keppra, it might help

Well it might but a lot of people got relief by tegretol, it was advised to be tried by neurosurgery doctor from Switzerland.

 

[Telis]

How is your life today ?

Incredible besides T and H. Thx for asking

 

[1MW]

A question have you worsening in first pills of trobalt ?
How to start 3 x 50mg every 8 hours ?
In first 100mg i had an improvement 1 hour to 2.5 hours after pill and then i
was worse than before getting trobalt.
Iam in fear of permanent worsening.
After low doses of trobalt return to baseline or worsening ?
I how many hour you see max effect from retigabine ?

 

[1MW]

Uh... I sat in an audiologist booth and didn't need to do a loudness match because I heard nothing... while also wearing noise canceling headphones.

Please can you post your audiogram before trobalt and after trobalt ?

 

[rtwombly]

@Christian78 My friend, I am always impressed to see you have suffered so much but your attitude always returns to positive. Even when you are at your worst you don't give up.

I haven't been posting much because after some setbacks I have had a good experience with Potiga. I don't have full cessation like Mpt, but like locoyeti, feel like I understand my tinnitus better and am less frightened by it. And the volume is way down, it's helped my hyperacusis to the point I can run the dishwasher just a few feet away which was torture before, and every now and again I forget about my tinnitus completely. Back on 300mg TID after dropping down a bit for a few days and the side effects are better. I do need to get some sleep though so this won't be a long post. I'll try to get on this weekend and do an update.

@IMW I had a bad spike while on Potiga. Happened when I woke up suddenly from a deep sleep. It went away after about 20 minutes. Be patient. Your brain is trying to understand what you are giving it. When you tell it to be quiet with drugs, sometimes it kicks back like a child, "I don't want to be quiet!" Just be slow and consistent with your dosing and it will calm down.

 

[1MW]

3x100mg every 8h is good to start or stay to 3x50mg for some days ?

 

[Danny Boy]

Well it might but a lot of people got relief by tegretol, it was advised to be tried by neurosurgery doctor from Switzerland.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829249/

 

[dan]

Conclusion
Carbamazepine and oxcarbazepine are not more effective than placebo in decreasing tinnitus severity.
Moreover, placebo significantly suppressed tinnitus severity in 50% of participants.
---
I hope this is not the case with Retigabine!

 

[Dr. Nagler]

Conclusion
Carbamazepine and oxcarbazepine are not more effective than placebo in decreasing tinnitus severity.
Moreover, placebo significantly suppressed tinnitus severity in 50% of participants.
---
I hope this is not the case with Retigabine!

We all do. Every one of us.

My question is: What is it that makes those here taking Retigabine so totally convinced they can "tell" that the effect of Retigabine on tinnitus is not placebo when those in the above study couldn't tell? The reason investigators do double blind randomized prospective controlled studies is because you simply cannot tell!!!!! You think you can ... you might even be sure you can ... but you can't. If you could, there would be no need whatsoever for such studies in the first place

And FWIW I think that @Telis is being unfairly criticized for trying to maintain some objectivity. Do you think that for one minute he hopes that the Retigabine effect is all placebo?

Dr. Stephen Nagler

 

[RichL]

Conclusion
Carbamazepine and oxcarbazepine are not more effective than placebo in decreasing tinnitus severity.
Moreover, placebo significantly suppressed tinnitus severity in 50% of participants.
---
I hope this is not the case with Retigabine!

I really think that intelligent individuals should be able to tell whats placebo and what is effective!
I mean is aspirin effective or is it a placebo effect?
I could go on.
Common sense surly!

 

[1MW]

Another exception with tegretol is that helps with benzos withdrawal but can induce T (is in list of ototoxic meds).
benzos withdrawal (sometimes when you are in use if small half life benzo used like alprazolam) causes/worsens T.
So maybe carbamazepine relief some T/H of benzos withdrawal.

 

[Christian78]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829249/

Danny they never take severe chronic sufferer from T lvl 9, they take people like @locoyeti , and then lvl 3 had hard time to distinguish between different levels of t, while lvl 9 know is he in pain or not.

 

[Christian78]

Another exception with tegretol is that helps with benzos withdrawal but can induce T (is in list of ototoxic meds).
benzos withdrawal (sometimes when you are in use if small half life benzo used like alprazolam) causes/worsens T.
So maybe carbamazepine relief some T/H of benzos withdrawal.

I dont think so. When you take benzos they activate gaba production. Gaba goes in overload and brain stabilizes it and put them in level with glutamates production 1:1. That is moment we say we became tolerant on benzo. We take more to achieve same effect when brain closes some gaba production centers and then it levels it to 1:1 with glutamates.

We all heard sudden stop with benzos can cause Tinnitus. Well point is when you stop a dosage of benzos time is needed for brain activate gaba production centres that he previously shut down to make status quo gaba:glutamate 1:1.

We all know that benzodiazepines have different half lives sleeping pill zolpidem 2h half life so take at 12 10mg, at 2 you have 5mg, at 4 you have 2,5mg, 6 1.25mg, 8 0.6mg. Valium is totally different with up to 200h half life, so you take every day 10mg and you get, 1sr day 10mg, 2nd 20mg,3rd 30mg,4th 40mg,7th day 70, 8th day 75, 9th 80mg... so you see Valium accumulates in blood and reaches high dosages.

Imagine you have 100mg valium in blood. And then you take tegretol. Tegretol is used when you get poisoned by benzodiazepines. He effectively unlock them from blood and kidneys throw them out.

Therefore it does flush benzos from blood. Missing benzos lead to effectively shutting down gaba production. What happens is abstinence syndrome, strong convulsion, often creation of tinnitus. Tegretol does not really help withdrawing from benzos, it is just used in hospital where they have to save life from overdose, OR they dont care what will happen with you but who have been misusing benzos so they want to quickly fix you, on expense of your entire nervous system. Hospitals do that today no one have time to go with you slowly not money. Either you have to be strong character, I got prescribed after tinnitus clonazepam and valium so it was like 50mg, that i had to reduce until now to 2 mg, but i am scared to stop 2mg because every reduction has a risk of small abstinence syndrome.

Anyway, tegretol can't be used to quick fix benzodiazepines, and when using tegretol using benzos is effective on really short time. Tegretol effectively eliminate bezos from blood. Symptoms under are what happens when you take tegretol on body full of benzos.



PSYCHOLOGICAL SYMPTOMS
Excitability (jumpiness, restlessness)
Insomnia, nightmares, other sleep disturbances
Increased anxiety, panic attacks
Agoraphobia, social phobia
Perceptual distortions
Depersonalisation, derealisation
Hallucinations, misperceptions
Depression
Obsessions
Paranoid thoughts
Rage, aggression, irritability
Poor memory and concentration
Intrusive memories
Craving (rare)

PHYSICAL SYMPTOMS
Headache
Pain/stiffness - (limbs, back, neck, teeth, jaw)
Tingling, numbness, altered sensation - (limbs, face, trunk)
Weakness ("jelly-legs")
Fatigue, influenza-like symptoms
Muscle twitches, jerks, tics, "electric shocks"
Tremor
Dizziness, light-headedness, poor balance
Blurred/double vision, sore or dry eyes
Tinnitus
Hypersensitivity - (light, sound, touch, taste, smell)
Gastrointestinal symptoms - (nausea, vomiting, diarrhoea,
constipation, pain, distension, difficulty swallowing)
Appetite/weight change
Dry mouth, metallic taste, unusual smell
Flushing/sweating/palpitations
Overbreathing
Urinary difficulties/menstrual difficulties
Skin rashes, itching
Fits (rare)


http://www.benzo.org.uk/manual/bzcha03.htm

 

[dan]

Danny they never take severe chronic sufferer from T lvl 9, they take people like @locoyeti , and then lvl 3 had hard time to distinguish between different levels of t, while lvl 9 know is he in pain or not.

That is a very excellent point Christian!
All these T studies, they don't include people with catastrophic tinnitus, or if they do then only one or two. I have never seen a trialee in any study with a VAS or TSI of a 9/10 or a 10/10. Mostly they are round 3 to 7 out of 10 max.
If they did a study of- me, Telis, Christian, John2012, LarryOT, Viking, Valeri and every other poor soul with 8+/10 T, believe me the placebo effect would be very insignificant.
I think tinnitus in the mild to moderate range is highly placebo prone.
Tinnitus is highly subjective, unlike cancer, where they can take a biopsy or in HIV patients where they do blood tests- there is no placebo there.

 

[locoyeti]

i'll just say that another aspect of the retigabine trial for me is that it really does show you what level your t is at, because u get to compare it to prolonged periods of silence (which is not, for the umpteenth freaking time, placebo). i have always said that my t is on the low side, i will say that a small part of that is just me not willing to give it a higher rating for psychological reasons i suppose. i am sure others who rate their t as low might be doing the same thing. don't get me wrong though, my t is still on the lower end of the spectrum. i don't know what 9+ feels like, and i empathize with those that are in that range (stay strong!). but i have the fluctuating kind of t, and although 60 - 70% of the time my t is pretty low and not bothersome, there are times when my t gets high pitched and gets a touch of H, and that is enough to say that it is a 6+ day, on this rather subjective scoring level. since these are days when the effects of t are the worst for me, some could make the argument that i should score it as a 8+ event, but i keep it at 5-6 in deference to what i am sure are people that are suffering far greater than i.

just wanted to add another thing about mml. when i got tested for mml during the AM-101 trial, they used a 1k Hz reference, which is not as good as using a reference point around what your t level is (in each ear). I did not get a chance to do the latter, but i heard that some TRT places check it that way. frankly i found the entire mml checking to be .... not too useful? there were just too many times when i could not say if it were higher or lower volume on the tones, mostly because i don't have pure tone t, as most people don't, if i'm not mistaken. kinda sucks that we don't have a super precise way of measuring our levels of t...

 

[OddV]

@locoyeti I agree with you on the mml. If they don't try and get close on your tone, then the loudness matching is a crap shoot. It's too tough to tell when the tone is way off. I had this done during the AM101 trials and mentioned it to the audiologist, they said it was protocol to do it this way.

 

[RichL]

My question is: What is it that makes those here taking Retigabine so totally convinced they can "tell" that the effect of Retigabine on tinnitus is not placebo when those in the above study couldn't tell?

I really think that intelligent individuals should be able to tell whats placebo and what is effective!
I mean is aspirin effective or is it a placebo effect?
I could go on.
Common sense surly!

Sorry for repeating the post but I'm sure I did not quote @dan in the original, at least I didn't think I did or wasn't suppose to anyway.

So repeated with the proper post quoted!

The reason investigators do double blind randomized prospective controlled studies is because you simply cannot tell!!!!!

I disagree! I don't think it is purely for that reason at all. Theirs a couple of reasons and that one would be only a small part of it.

I think it is because a large majority of the human race cannot rationalize properly and have a pack mentality or what I call a medical,(or man with a white coat), submissive mentality!, They just want to please or tell them what they think they want to hear!

I think an intelligent individual could tell the difference between a sugar pill and one that actually works on the affliction, whatever it may be!

 

[Juan Carlos]

Hi guys, i some new facts about RTG to tell. First, some little experiencies to draw a conlusion about side effects

• Other day came home and took 400mg dose, had a shower and after it I was on my "hightime", time to dress, i totally forgot the order wich I should follow to dress, had to think like 5 seconds that logically my boxers go first than my pants
• One day I was cicling on a way I made hundrets of times and I automatically take the shortcuts I know very fast. Well on Trobalt i could not take the shortcuts and I had to follow the drawn way on the road
• When im high, and i try to type fast, I swap letters, it happends Exactle the SAME when hand-writing, it messes up any automated effect on the brain
• When on trobalt, Im also was very aware of my "eye floaters", I see them when I am on Trobalt, and not when im off. I always had them since child, i have few small like 3 or 4 on each eye and i can always see them if looking for them, but on Trobalt i instantly see when i get high. So I was HABITUATED to the floaters, but Trobalt removed that habituation.

Why im saying this? TROBALT REMOVES ANY KIND OF HABITUATION created in your brain, and any kind of automated learning, aka, writing on keyboard, hand-writing, play the guitar, remove eye floaters etc etc etc SO, here comes a conclusion, just to shut the month of those people "I didnt try RTG but im sure it doesnt works" aka telis or dr negler. If any of out testers was habituated to tinnitus in any degree, very probably because we had chronic sufferers, Trobalt removes the habituation so they would report a volume increasing or annoyance increasing, and that just DID NOT HAPPENED in our around 30 trialees. Also it proves that Trobalt does not just HABITUATE to your T (what some people think), it does the opposite when high (short term), even on long term may help to habituate , so there is for sure some sound reduction

will write another interesting fact in next post to not mix topics

 

[Juan Carlos]

Here comes another fact discovered on my hightime after shower. I was listening just a very faint 4100 tone on my right hear, lets shut it down. I listed my tone, loud for about 5 seconds to make residual inhibition. Woow its works so good, let see how long it takes to come back. I put the chronometer on my casio, and it passed more than 17 minutes and still i was in Total Silence

Here it goes, Residual Inhibition when on trobal is SUPER EFFECTIVE.

I dont know and i cant understand the MOA of residual inhibition (thats play and listen to your tone for some time and after it your T is gone for some time), but it really works.

My theory is, when on trobalt, the neurons excitability are easier to modulate, I shut them off with RI and stay calmed like forever, then I listen to loud white noise and get excited again.
This matches more with what I have said many times that the sleeptime is super important, we should put the highers doses on nightime because 1-we are relaxed and 2-we are on silence

There are 2 reasons why neurons can be excited on auditory cortex
-They are working, because we are listening to sounds...
-They are excited even on silence, because we have Tinnitus...

For example in my case, on daytime my T is totally masked, so I think that neurons have same excitability level either on trobalt or Off Trobalt, so is there a point for me to take Trobalt on daytime ?? I think not for me

That also matches with the fact that we ALL have some kind of "reactivity tinnitus" some more , some less, even the "healthy" people, when go to a concert get some reaction T after it, luckily they get cured when sleeping

Our aim is to induce calming neurons, that in my case can be posible only in total silence plus Trobalt, and RI will help too. Thats why I changed my scheme to 400+400 (night) , and still wondering if i will take 200mg at midday, today i will take only 100mg at 12am

After that, I must say that im almost sure that i have improvement over time, that is, my T is still very low when I skip doses and its pattern has definely change (tone is more clear, less noise), my left ear is mostly all time in silence
hope this helps guys, good luck!

 

[Philemon]

• Other day came home and took 400mg dose, had a shower and after it I was on my "hightime", time to dress, i totally forgot the order wich I should follow to dress, had to think like 5 seconds that logically my boxers go first than my pants

Hi Juan Carlos, I pretty much appreciated your posts, quite informative as usual, and there is a some things that i share in terms of highness effects in the way you described it.
just a little tip that could sound silly to you ('cause you probably thought about) but maybe it's just better to take your shower some time after taking the pills/while the hightime starts (or a bit of time after it starts), in my case shower is pretty effective to lower the highness ;-)

 

[Juan Carlos]

Hi Juan Carlos, I pretty much appreciated your posts, quite informative as usual, and there is a some things that i share in terms of highness effects in the way you described it.
just a little tip that could sound silly to you ('cause you probably thought about) but maybe it's just better to take your shower some time after taking the pills/while the hightime starts (or a bit of time after it starts), in my case shower is pretty effective to lower the highness ;-)

thanks! I will try, anyways, why should I lower the highness? I like it

 

[preslys]

When on trobalt, Im also was very aware of my "eye floaters", I see them when I am on Trobalt, and not when im off. I always had them since child, i have few small like 3 or 4 on each eye and i can always see them if looking

hi carlos
how long you are going to take this medicine (trobalt)? knowing that the side effects are started to appear on you as you have mentioned (eye floaters).