Retigabine (Trobalt, Potiga) — General Discussion

[john2012]

Are you serious????????????? Really, I mean this question. (Also, if so, see above re variations in Retigabine dosage and methodology!!!)

Best, Zimichael

Hi Zimichael, thanks for your input
do you think the rotation would invite problems
i just wanted to mainitain long-term effect as i've been
hit by tolerance already a few times.

thanks for your help

also....please can anybody find anything in the literature to support that
keppra targets kv3...if it does, our thanks to Viking

 

[john2012]

so how many of us on this thread are critical?
i know that martin69, telis and hazar have it severe/intrusive
whilst some others may have an easier type of tinnitus

 

[amandine]

@Zimichael

Hi how are you?

Please dont jump up and down on me, I was only trying to help the community.

There has to be a reason as to why people have come to the idea in the first place on TT that taking Trobalt will help with T.
All I was attempting to do was to provide a simplified theory. So to save people trawling through pages of posts and wordy scientific literature.
I did not say that this was a definite. I said that this is a simplified version of the theory.
I also said that even the scientists dont know how it works so how are we supposed to understand it.
I just felt that for people who either found the literature too daunting to read or new people coming on here, this may be of some help to explain why it is being trialled (as opposed to anything else for example an aspirin).
I was definitely not saying that this is how it works....this is a theory...
I also said that this theory can be modified with new information. This is how I have understood the theory. Please feel free to offer a simplified few lines on the theory of Trobalt for T, especially as you have studied it and I have not.
I would be very happy actually glad to see your theory - I did originally ask for a simplified version but was laughed at. So I put my own simplified version. But I was looking for a simplified version easily understandable that could be posted potentially at the top of each page of this thread.
Same goes for keppla...
Please Zimichael, please do post a simple theory on trobalt and keppla.
By the way, I have been told by others that there is some stuff online that says Keppla can cause T.....I dont know, I am not a scientist or neurologist......

Amandine...this is seriously jumping to conclusions we, or at least I (and i have spent a lot of time on this) would not state with any assurance.

 

[Nick the Swede]

@Philemon, I have full respect for those who try this old horse pill but i think we need a little bit perspective here and there as well. Maybe you should read the last pages again.

 

[Philemon]

@Philemon, I have full respect for those who try this old horse pill but i think we need a little bit perspective here and there as well. Maybe you should read the last pages again.

@Nick the Swede ok but still the terminology matters ... anyway it's maybe 'cause of my poor english ;-) ... or, as you said, to the fact that i've read the last pages too fast
best to you !

 

[dan]

hello my friend, hope you are okay
it's interesting, a big enough dose of klonopin dampens my
tinnitus/perception of it to make things more manageable,
similar to lyrica
it's not perfect but it's something
i've just needed to find different classes of drugs to rotate
it's tough right now, how are you?

Very tough...
So what kind of Klonopin dosage does it take to "dampen" your perception.
Does it actually reduce the tinnitus, or are you also another one of the psychogenic perception types...

 

[john2012]

@dan
i havent taken any klonopin for a while
no point until i can get rotation set up
as i remember the pills come as 0.5mg
i'd take maybe 4 or 5 of those and be in a better place
now I can't do that everyday of course
i'd say at a high enough dose it reduces the tinnitus
i believe its a gaba-dampening-down effect
dr. r levene's theory is fusiform cells, blah

of course everyone will have a bit of the psychogenic about them with benzos

so you're finding it very tough too...what's the toughest aspect
of your tinnitus to bear?

 

[Zimichael]

@john2012 ...John, I appreciate where the questions are coming from on tinnitus intensity and the Klonopin, but please try and keep them turning specifically back to retigabine...as this thread is a mega-monster to keep track of.

On your question of a "triumvirate of alternation meds"...Gahhhhhhhhhh, how can I say anything to that? I was trying to get my single Benzo down to near zero before trying Trobalt so that I was not "messing with the evaluation". The whole GABA influence alone on Retigabine and plasticity is worthy of another 50 page thread! Three potent drugs???!!! well to me it is not a Retigabine trial it's a "cocktail trial - inducing Retigabine".
I am NOT saying that in a negative way OK. It would be intriguing indeed, but hell, quite a lab rat approach if you are willing to do it and indeed I understand what you are saying and why. We could speculate about this for hours as I have done a lot of private and further follow-up on GABA (benzos) + Kv's and I can assure you I haven't a bloody clue what the hell is really going on, or may go on...let alone with any one individual.

@amandine ...I was not jumping on you. If you read my reply it is a simple statement and all I had time for. I can't say a think about Keppla/Lev as only heard about it for the first time today. If it's a Kv3.1 modulator, then it could be Christmas, and we can get another 100 page thread going.
OK, you want some "mechanisms of action for Trobalt". Here's a few:

1. The big Kahuna full on serious dude one: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03365.x/full Please note the title. Just what you wanted.

2. Shamelessly plagiarized from others:

~ Retigabine activates certain potassium-channels found in the brain. These are inhibitory structures that calm hyperactive firing of neurons, which imaging studies have demonstrated in tinnitus sufferers.

~ Retigabine targets the KCNQ channel by activating a hyperpolarizing K+ current, thereby reducing excitability of neurons. It's action on neurons throughout the auditory network, particularly at the KCNQ2/3 heteromeric channels in the DCN fusiform cells, may attenuate and perhaps cure tinnitus.

3. My explanation - and as you can see, I am but a mere stable boy in the stalls of the giants...

~ "In the Beginning was Silence...Then the Silence was shattered by the demons of Tinnitus...Then for the brave, there came the Redemption of Retigabine."

I need breakfast... Zimichael

 

[rtwombly]

I have not had time to read any posts on this thread or any other today but I must post this before I forget. It is for anyone who has wondered if Retigabine really works or if Mpt and other people's results are real, placebo, or natural improvement.

Today is the first day of 900mg Potiga, that is, 300mg three times a day. At 3pm today. I took my first dose of 300mg Potiga. After attending to some about 20 minutes ago I set out for a walk, my usual short walk around the neighborhood. Sometime during my walk

MY TINNITUS MOVED​

I packed its bags, rounded up the kid tinniti, and departed my right ear, where it's been living since mid January, minus the occasional vacation in left earsville.

People without this dreadful symptom probably would not understand how I can hear in the top left quadrant of my skull. Maybe if they've been on LSD. But you lovely people I hope get what I'm talking about. It moved. I hope forever because it's much less bothersome in my top left skull. I hope it's there until it dies. I hope it dies soon, of course.

Now, I guess it's a possibility that I'm mildly tripping and this perception is a neurological symptom. I hope not. I hope it's that my prominent right ear tinnitus has been silenced, temporarily or not, and I'm now able to hear the less annoying central left noises.

Whatever. It works. That's all I really wanted to say!

 

[attheedgeofscience]

@attheedgeofscience, is it your feeling that one should start with 300mg daily (100mg 3x/day) and then if needed increase to 900mg daily (300mg 3x/day)?

Dr. Nagler, I certainly don't mean to be difficult, but I honestly - truly honestly - do not have an opinion on the pharmacology and dosage increase/tapering for Trobalt. This thread which consists of +3000 posts(!) has anything - and everything - from suggesting a fast taper up as opposed to following the slow taper indicated for epilepsy patients (for which the drug is on-label as you know).

As an example, the following post suggests - via the advice of a neurologist - that a slow taper-up should be followed:

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074/page-18#post-58393

Playing the Devil's advocate here - how can the neurologist in the above post really know that (in relation tinnitus)? The whole point of a formal Trobalt study would be to examine properly the dosage levels, treatment duration, and tapering for tinnitus patients, specifically (as you know better than I).

I have been very absent from most theoretical discussions in this thread simply because... I don't know. Which apparently is the correct answer because the professor-level researchers I have been in contact with do not know either! The very first of the four researchers I have recently been in contact with regarding Trobalt (and tinnitus) is a professor of pharmacology. I asked him about both Trobalt and Flupirtine (which I have been taking as it affects the same channels as Trobalt ie. Kv7.2-5); he was not willing to suggest any dosage regimes because neither of the drugs have been studied to a proper degree (in relation to tinnitus and humans).

So I guess the only way to answer your question is: what would I do if I had to take Trobalt? Well, if I did, then I would follow the treatment protocol as indicated by the medication slip inside the package. I certainly would not start with a higher dosage ie. 3 x 300mg/day, if that's what you mean. In relation to tinnitus suppression, the research paper titled "Pharmacodynamics of potassium channel openers in cultured neuronal networks" mentions how dosage is potentially quite important in order to achieve the suppressive effect on tinnitus. But the research paper is a theoretical paper (needless to say). And so yes, I would increase the dosage slowly if I wasn't experiencing any effects at eg. 3 x 100mg/day. A Trobalt study should also be concerned with the possibility of actually curing tinnitus by maintaining a certain dosage (eg. 900mg/day) for a given period, and then tapering down. What that "given period" might be is (yet) another variable to be studied, in my opinion.

I have background in finance, and I am honestly not comfortable - at all - discussing dosage/tapering of an off-label product. That is how I see it. And it explains why I have been so absent from this thread except for sharing developments/findings from the people who know much better than I do.

I realize the response above is rather "useless", but it really is a topic I feel strongly about, and I just do not want to touch it even with a pair of iron tongs.

 

[OnceUponaTime]

Ok... insurance covered it. I'm speechless right now. Holding a bottle of 30 pills Potiga 50mg in my hand.

@Philemon Not sacrificial lambs.... But brave, strong people. Instead of staying in the side lines watching what happends you all have been brave and inspiring. Best of all to you all that have and are trying Retigabine. It is a chance that you have given yourself to see if it helps.

 

[amandine]

~ Retigabine activates certain potassium-channels found in the brain. These are inhibitory structures that calm hyperactive firing of neurons, which imaging studies have demonstrated in tinnitus sufferers.

Brilliant! Thanks! This one will do! Would like to have added some reason for the potential side effects though. Could it be a good idea at the top of the page of this thread so people can read it and understand basically how it works together with any links if the reader wishes to do further study. What do you think - a good idea or a waste of time?
Dont know if this is even possible to do anyway. Or whether the founders of this forum would be in agreement.
Would also like to see a contrast between how retigabene works and keppla works (I understand that you dont know about it but @Viking knows about it and is trying the drug now).
Anyhow, it was just a dumb idea I had. Thought that it could make it easy for readers to understand the basic theory so still be able to understand this thread.
Hope you had a great breakfast! You certainly deserved it after your hard work! Thank you again Zimichael.

 

[kaycee]

How does one get prescribed retigabine for tinnitus?

 

[Zimichael]

Hey @amandine ...glad you found something in that mish-mash. I had to come back online to finish up some more with PM's so figured I had better throw in the last few cents now before 2 pages more appear tomorrow morning!

Yes, the "side effects" of any drug really are generally speaking where the active agents in the drug hit more areas than just the "specific target". Obviously if the drug just hits the one area we want, then "Bingo!" As you know, the side effect profiles of most drugs read like a shopping list from hell, so one takes ones chances and hopes for the best.

With Retigabine hitting so many of the Kv7's (Gene ref. KCNQ) = Kv7.2 to Kv7.5, there is a wider spectrum for "expression" than say just having a Kv7.3 drug.
So the deal is, that genetic expression of these KCNQ's are in numerous places in the body and thus when taking the drug these places can be affected, depending on the individual, etc., etc. Primarily for instance. Kv.7.2, Kv7.3. and Kv7.5 work in the brain and ganglia, and "excitation" aspects thereof...(though not so sure on Kv7.5 and the particular epilepsy excitation connection). Anyway, that makes sense for epilepsy as it can be brain-wide condition for all appearances. Not that I'm a neurologist but have seen a few folks have grand mal seizures in my day and it sure looks brain-wide!
OK, apart from the brain (and cochlea and vestibular hair cells for Kv7.4) there are other KCNQ's in the urinary tract, kidneys, heart, etc. and obviously some connection to pigmentation in the retina, lips, nails, etc. - but God knows on that score what's really happening.

Hopefully a more targeted Kv drug will just go for the more "tinnitusy" stuff and leave peeing and so forth alone.

Best, and thanks for asking how I'm doing. Not as good as was on Potiga...though can do without the H that tagged along when on it... Zimichael

 

[attheedgeofscience]

How does one get prescribed retigabine for tinnitus?

You see your general practitioner or a neurologist for an off-label prescription. Bring documentation.

 

[Zimichael]

Just to let you know that Danny Boy is now on Trobalt 2 times daily at 500mg and has been for a few days. Therefore he is now on 1000mg a day. He no longer takes the third dose of 300 mgs.

There we go...yet another way of dosing Trobalt!

Like I said and ATEOS gave more elaboration to above...it's the "wild west" with mere guidelines. Which, in my opinion is just fine as long as everyone is "OK" as if we just did what the epilepsy book said we would not know of all this variability potential. If you stay in a box you see a box.
We already jumped out of the box by trying this stuff for tinnitus in the first place!!!

Gahhh...Enough for today I think. I dare not even look for the supposed new Keppra thread.

Zimichael

 

[attheedgeofscience]

3. My explanation - and as you can see, I am but a mere stable boy in the stalls of the giants...

http://scholar.google.com

"Stand on the shoulders of giants..."

 

[amandine]

@Zimichael

What a gent you are!
Thank you so much for explaining how trobolt works on the kv7 channels.
I have to admit that this is the first time that I have now clearly understood how trobalt works leading to the differing potential side effects. How it can affect the different parts of the body (explains to me and others) the risks to kidneys bladder heart eyes etc.
Thank you so much! You have in fact reached parts of me that no man has reached before....my brain!
I really appreciate you taking the time to write this explanation. It is clear and concise and deserves a separate special place on this thread together with your earlier concise explanation.
Simply brilliant!
A bit cheeky here but could you try to understand the keppla for me (us the community) and once you have your head round it, put together a similar post - please - no smiley icons here (I dont know where they are) but imagine me with a big hopeful grin!
Hope you will have a lovely day and a sweet night.

Yes you are right re the dosage...it is all over the place, good for some like this and the same dose terrible for others.
Nice though to see that we have two women who are unafraid to take this drug.....me, well I am still thinking about it hence the need to understand it.....

 

[Lake Girl]

Sorry about not being clear on my dosage. I started with 50mg TID for 5 days. I am now taking 100mg TID. In 2 days I will add another 50mg for a total of 150mg TID.

Today, about an hour after taking my first 50mg, I experienced TOTAL SILENCE for the first time in 18 months. I could hardly believe what I wasn't hearing! It lasted for over 2 hours before T started creeping back slowly. It is now 30 minutes since my second 50mg of the day and T is hardly noticeable. Feeling optimistic!

 

[eldudebro]

Some brave souls in here, and some very encouraging stories.

I'm not brave enough to try this drug myself yet, but I have reached a point of acceptance with my T in recent weeks where although I would rather it gone, my anxiety over it is much lower. Not sure whether it's got quieter or my brain has just hardened to it of late, either way I'm in a lot better shape than I was.

I'll be following this thread for a while, wait to see if anyone achieves some real lasting relief with Trobalt as it is early days yet. I may then consider trying to obtain it from my doctor.

Good luck to all of you taking it and I have my fingers crossed for you.

 

[OnceUponaTime]

How does one get prescribed retigabine for tinnitus?

Get yourself a good neurologist who loves research and new medicine.... do your research first. Then give him printed information on Retigabine and take it from there.

 

[skoupidis]

Get yourself a good neurologist who loves research and new medicine.... do your research first. Then give him printed information on Retigabine and take it from there.

What sort of information?

Also, does Trobalt affect hyperacusis in those of you who have it?

 

[tomm]

I need to take a flight to the US in Jan and so will have to taper off before I go. Obviously I'm hoping to have some of the effects stay with me after taper.

Is the expectation that once you've had a go and taper down it's unlikely to work as well if you try again in the future due to your brain being used to it?

It's a difficult choice as it's a wedding of an old friend so I can't just postpone it. I also don't want to lose the window where ret is doing it's best work.

 

[sticky]

Sorry about not being clear on my dosage. I started with 50mg TID for 5 days. I am now taking 100mg TID. In 2 days I will add another 50mg for a total of 150mg TID.

Today, about an hour after taking my first 50mg, I experienced TOTAL SILENCE for the first time in 18 months. I could hardly believe what I wasn't hearing! It lasted for over 2 hours before T started creeping back slowly. It is now 30 minutes since my second 50mg of the day and T is hardly noticeable. Feeling optimistic!

Positive news @Lake Girl

and your T is over the "magical" one year

sticky

 

[Albertus]

What sort of information?

Also, does Trobalt affect hyperacusis in those of you who have it?

Yes, my hyperacusis has disappeared completely.

 

[Telis]

Yes, my hyperacusis has disappeared completely.

How bad was your H on a scale of 1-10?

 

[Christian78]

My H went up together with tinnitus, not when i am going down my hyperacusis worse and worse, i did not had so much hiperacusis

 

[john2012]

Sorry about not being clear on my dosage. I started with 50mg TID for 5 days. I am now taking 100mg TID. In 2 days I will add another 50mg for a total of 150mg TID.

Today, about an hour after taking my first 50mg, I experienced TOTAL SILENCE for the first time in 18 months. I could hardly believe what I wasn't hearing! It lasted for over 2 hours before T started creeping back slowly. It is now 30 minutes since my second 50mg of the day and T is hardly noticeable. Feeling optimistic!

Pay attention everyone
Here we have TOTAL SILENCE from a chronic Tinnitus case on low dosage.

I have a feeling that as more people come forward to trial retigabine, the more SUCCESS stories we'll see.

 

[locoyeti]

my H went away as well, or rather more truthfully is down 95%. that in itself is winning half the battle. hopefully it will persist after i taper off.

 

[john2012]

Thank you. Do you take it in divided doses (like 3x/ day), or do you take it all at once?

Dr. Stephen Nagler

Hello Dr.Nagler,

we all appreciate you taking an interest in this thread.
If one of your patients asked for retigabine, might you be likely to
give it to them off-label. Most recently, Lakegirl has experienced total
silence for the first time in 18 months, so there have been some
encouraging developments.

John