Retigabine (Trobalt, Potiga) — General Discussion

[Mpt]

Retigabine can be very dangerous. Do not take it unless prescribed by a physician.

This thread is reserved for general discussion on Retigabine.

User experiences from people who have taken the drug can be found in:
Retigabine (Trobalt, Potiga) — User Experiences

Retigabine, (Trobalt, Potiga)- is a KV7 modulator used for epilepsy that was shown in an University of Pittsburgh study to inhibit tinnitus formation in mice. Has anyone seen any posts online in regards to this being used off-label as a tinnitus treatment? I would also be interested if anyone has seen any anecdotal evidence on the web of other anti-seizure medications being used off-label for tinnitus treatment.

@attheedgeofscience ... have you looked into this at all?

The drug has caused eye pigment changes in long term users, the other side effects seem to be minimal, I'm seriously considering taking this-- I don't care about the potential side effects in regards to eyes changes. I could deal with that and that seems to be a long term consequence of fairly high doses, the one thing that I'm most concerned about is that taking it doesn't worsen my tinnitus.

 

[attheedgeofscience]

Not really. I don't know much about brain chemistry; to be honest, I know nothing. It is my understanding that Retigabine is only useful before onset of tinnitus ie. it can be used in situations where noise exposure may be deemed to be strong enough to potentially cause tinnitus to develop.

My path in treating tinnitus has been very focused on medicine which target the cochlea. As a last resort, I am considering surgery which targets the brain. I have no real interest in even looking into drugs, because drugs will typically need to be taken for life. I imagine. And most brain chemistry drugs come with a certain degree of side effects.

That would be my answer. For what it is worth.

(I hate it when threads are moved while typing a response... ).

 

[Mpt]

I have had a massive improvement a few days after getting on retigabine, but I wanted to give it awhile before reporting anything to reduce the chance that I'm reporting on a placebo effect. I've been taking it exactly two weeks as of today, and I can pretty confidently say that the improvement that I've seen is not a placebo effect or habituation. My tinnitus is/was pretty loud. Before taking the drug I was starting to habituate, but the sound hadn't changed, if anything when I checked it by sticking my fingers in my ears, it sounded louder than it originally was 5 months ago when I got tinnitus, my reaction was just better. Now though, I literally don't hear the ringing, its still there, but I can't even hear it in quiet rooms—I literally have to be in a quiet space and plug my ears in order to hear it, if I plug my ears in a room with decent ambient sound… air conditioning, tv.. I can't even hear it in those environments with my ears plugged. A few weeks ago I could hear it driving down the interstate at 80mph with the radio on. Retigabine is a potassium channel modulator KV7, (Autofony is a KV3 modulator). The brand name is Potiga in the US and Trobalt in Europe. My father-in-law is a gp and prescribed it for me off label. Obviously I'm going to keep taking it if these results persist. Thought you guys would want to know.
Tinnitus probably has different etiologies like other brain diseases, epilepsy, etc--- and yes it a disease--- that's like saying epilepsy isn't a disease, seizures are just a symptom, just a semantics debate for authorities within the tinnitus community to spin their agendas with… if anyone can get a Dr to give them this off label I think its worth a shot—I'll keep everyone updated

 

[Mpt]

and one more thing... habituation was getting to feel good--- but it doesn't compare to the silence I've been experiencing-- I feel like I have literally been reborn-- these have been the best days of my life

 

[Grace]

Not really. I don't know much about brain chemistry; to be honest, I know nothing. It is my understanding that Retigabine is only useful before onset of tinnitus ie. it can be used in situations where noise exposure may be deemed to be strong enough to potentially cause tinnitus to develop.

My path in treating tinnitus has been very focused on medicine which target the cochlea. As a last resort, I am considering surgery which targets the brain. I have no real interest in even looking into drugs, because drugs will typically need to be taken for life. I imagine. And most brain chemistry drugs come with a certain degree of side effects.

That would be my answer. For what it is worth.

(I hate it when threads are moved while typing a response... ).

Which surgery are you considering? Im sure you mentioned it somewhere on here.

 

[Mpt]

if anyone is wondering I am taking 300 mg three times a day

 

[lapidus]

I have had a massive improvement a few days after getting on retigabine, but I wanted to give it awhile before reporting anything to reduce the chance that I'm reporting on a placebo effect. I've been taking it exactly two weeks as of today, and I can pretty confidently say that the improvement that I've seen is not a placebo effect or habituation. My tinnitus is/was pretty loud. Before taking the drug I was starting to habituate, but the sound hadn't changed, if anything when I checked it by sticking my fingers in my ears, it sounded louder than it originally was 5 months ago when I got tinnitus, my reaction was just better. Now though, I literally don't hear the ringing, its still there, but I can't even hear it in quiet rooms—I literally have to be in a quiet space and plug my ears in order to hear it, if I plug my ears in a room with decent ambient sound… air conditioning, tv.. I can't even hear it in those environments with my ears plugged. A few weeks ago I could hear it driving down the interstate at 80mph with the radio on. Retigabine is a potassium channel modulator KV7, (Autofony is a KV3 modulator). The brand name is Potiga in the US and Trobalt in Europe. My father-in-law is a gp and prescribed it for me off label. Obviously I'm going to keep taking it if these results persist. Thought you guys would want to know.
Tinnitus probably has different etiologies like other brain diseases, epilepsy, etc--- and yes it a disease--- that's like saying epilepsy isn't a disease, seizures are just a symptom, just a semantics debate for authorities within the tinnitus community to spin their agendas with… if anyone can get a Dr to give them this off label I think its worth a shot—I'll keep everyone updated

Congratulations! If anything this is somewhat a sign that Autifony is on the right track with the potassium channel stuff. I don't even know what a potassium channel is though. Hope this also has a permanent effect on you.

 

[Martin69]

If you google for trobalt and tinnitus, you will find some articles about it.
They are some months old. Would there not be more information available if it helps for T?

I can remember, Neenie wrote something about Souvenaid (against Alzheimers) has helped her.
But no more information from her since beginning of June. I don't know if both drugs do similar things.

Mpt, keep us updated.
I myself also don't know what a potassium channel is.
I am happy for you that you have silence again.

 

[jazz]

I have had a massive improvement a few days after getting on retigabine,

Now though, I literally don't hear the ringing, its still there, but I can't even hear it in quiet rooms....

A few weeks ago I could hear it driving down the interstate at 80mph with the radio on. Retigabine is a potassium channel modulator KV7, (Autofony is a KV3 modulator). The brand name is Potiga in the US and Trobalt in Europe. My father-in-law is a gp and prescribed it for me off label. Obviously I'm going to keep taking it if these results persist. Thought you guys would want to know.

Tinnitus probably has different etiologies like other brain diseases, epilepsy, etc--- and yes it a disease--- that's like saying epilepsy isn't a disease, seizures are just a symptom, just a semantics debate for authorities within the tinnitus community to spin their agendas with… if anyone can get a Dr to give them this off label I think its worth a shot—I'll keep everyone updated

@Mpt This is all excellent information. I am so happy for you! What about side effects? The drug seems to have some; most notably, blue skin. I would watch for this. Change in eye pigmentation less of an issue, especially if you have brown eyes.

Just for everyone's information, I'm going to post a Wiki piece on potential side effects:

Adverse effects
The adverse effects found in the Phase II trial mainly affected the central nervous system, and appeared to be dose-related.[8] The most common adverse effects were drowsiness, dizziness and vertigo, confusion, and slurred speech.[10] Less common side effects included tremor, memory loss, gait disturbances, and double vision.[9] In 2013 FDA warned the public that, Potiga (ezogabine) can cause blue skin discoloration and eye abnormalities characterized by pigment changes in the retina. FDA does not currently know if these changes are reversible. FDA is working with the manufacturer to gather and evaluate all available information to better understand these events. FDA will update the public when more information is available.[17] Psychiatric symptoms and difficulty urinating have also been reported, with most cases occurring in the first 2 months of treatment.[15][18]​

Still, I am very happy for you. Keep up posted. Sometimes with anti-epileptics, their ability to lower tinnitus will loose effectiveness after a while. But this drug could be different. I hope so!

Reference:

http://en.wikipedia.org/wiki/Retigabine​

 

[Zimichael]

@Mpt...Yeah, really great. Goof for you too for taking the plunge and trying it, as indeed there are always elements of the unknown with stuff like this.
I'm going to do some perusal on the drug and see what I come up with and will add to my short list for my doc along with IV Ketamine...Indeed, please keep us posted!!!

Of course I'm wondering if it may be effective at all for longer term T (decades) as yours is still pretty 'fresh'...Has anyone out there tried Retigabine who's had T for many years??? And sorry if this has all been reported before as I have not searched the site yet - though assume Jazz would have said something about that.

Take care... Zimichael

 

[undecided]

A very interesting thread, I'm surprised it hasn't caught more attention!
This along with the AM-101 trials makes it seem like something good is on the way. Maybe not a cure but a definite relief.

 

[lapidus]

A very interesting thread, I'm surprised it hasn't caught more attention!
This along with the AM-101 trials makes it seem like something good is on the way. Maybe not a cure but a definite relief.

Look at the Autifony thread, this thread's discussion kinda moved over there since it's a potassium channel modulator.

 

[Mpt]

I did a test last night-- I tried to think of the quietest place in my house--- I have a garage that is underground except for the wall where the garage door is and I sat inside my car in in this room- my decibel meter was reading about 20db- extremely quiet in there- basically the closest thing that exists to total silence in my everday world-- I sat and listened for a few minutes and heard absolutely nothing, only when sticking my fingers in my ears could I hear the slight sound-- in my oppinion if this holds up I am "cured" for all practical purposes

 

[mmacabre]

Hmmm... Well mpt now I'm considering taking the risk of having my retinas turn blue

 

[lapidus]

@Mpt...Yeah, really great. Goof for you too for taking the plunge and trying it, as indeed there are always elements of the unknown with stuff like this.
I'm going to do some perusal on the drug and see what I come up with and will add to my short list for my doc along with IV Ketamine...Indeed, please keep us posted!!!

Of course I'm wondering if it may be effective at all for longer term T (decades) as yours is still pretty 'fresh'...Has anyone out there tried Retigabine who's had T for many years??? And sorry if this has all been reported before as I have not searched the site yet - though assume Jazz would have said something about that.

Take care... Zimichael

Yeah you should try this stuff man, it's the only way to find out i guess.

 

[Zimichael]

@Mpt... This mat be a bit early in the game yet, but do you have any plan on how long you are going to take the stuff at 300 mg TID (3 x a day)?
I guess my real question is...are you going to stop and see what happens? Maybe this is an "only works if you take it" drug...or it could be one that kicks arse in the brain software department and they make a lasting 'patch' that rectifies the T 'abnormality' for good.
Included in this would be if you taper off slowly, or just stop...if you are going to stop, etc.

Mmmmmm, also, another med detail. Do you know if the brand, strength, concentration of Retigabine/Potiga is fixed? In other words, was this compounded for you, or an 'off the pharmacy shelf' plain vanilla prescription fill?

By the way, here's the standard discalimer blurb on Potiga c/o my most used 'check the drug' site at drugs.com:

Before taking this medicine
You should not use Potiga if you are allergic to ezogabine.

To make sure you can safely use Potiga, tell your doctor if you have any of these other conditions:

• kidney disease;
  
• liver disease;
  
• an enlarged prostate;
  
• urination problems;
  
• heart disease or a heart rhythm disorder;
  
• a history of depression, mental illness, or suicidal thoughts or actions;
  
• a personal or family history of Long QT syndrome; or
  
• an electrolyte imbalance (such as low levels of potassium or magnesium in your blood).
  

Long-term use of Potiga has caused a blue-colored appearance of the skin or eyes in some people. This effect was seen mainly in the lips, face, legs, fingernails, and toenails. You should have your eyes checked before you start taking Potiga.

Potiga may be habit forming. Never share this medicine with another person, especially someone with a history of drug abuse or addiction. Keep the medication in a place where others cannot get to it.

FDA pregnancy category C. It is not known whether Potiga will harm an unborn baby. Tell your doctor if you are pregnant or plan to become pregnant while using this medication.

Oh, and no "hearing signature" under side effects. Good!

Well depression huh? I guess that's standard. It's also standard for most of us with life altering reactive tinnitus, where 95% of things I would like to do are out the window!

Thanks much... Zimichael

 

[just1morething]

if anyone is wondering I am taking 300 mg three times a day

Is that a high or low dose? Please update us on the side effects you have , if any.

 

[Mpt]

Hi Zimichael,

Potiga is still under patent-- I'm taking it in pill form, no compounding... the only side effect I notice is that I'm a little more tired at the end of the day after returning from work-- which I actually don't mind-- its not significant. My father in law said from what he's read and gleaned from a conversation with a neurologist colleague is that the eye pigment changes occurred in less than one third of patients who took this at least 900mg a day over a long time period (>5 years), these changes have been hypothesized to maybe result in degeneration of sight even though that hasn't occured in any of the patients with eye pigment changes-- so to answer your question I'm going to stay on this indefinitely, my father in law seems to agree as long as its working I should keep taking it, I am going to get an eye exam soon, and will have one every 6 months following to track any eye pigment changes

 

[Mpt]

300 mg 3 times a day is a standard dose

 

[just1morething]

300 mg 3 times a day is a standard dose

Did you ramp up to your current dose of 300mg x 3 /day slowly? Like maybe starting at 100mg x 3 /day. Anyway, that's nice of you to experiment with Retigabine, for the possible benefit to yourself and others. Some people have tried anti-seizure meds such as Mysoline and Trileptal with some success. I have used Gabapentin + Klonopin together and they seemed to work good early on for my noise, but lost their effectiveness over time. I am currently trying Mysoline + Klonopin.

 

[Zimichael]

@Mpt Hey thanks. Just the info I needed.

P.S. One of the reasons I asked was that back in 2005-2006 (before the ototoxic cocktail that did me in with "Jump 3" in T and gave me the 'new' H), I was being treated with Mepron (Atovaquone) for Babesia - a suspected "hitch-hiker" with Lyme Disease - and my eyes turned yellow = same colour as the bloody med! It was kinda freaky to say the least. As it was a very low % possibility we did a genetic test that showed I had a specific detox pathway (may have been in Cytochrome P450...too many things going on back then to remember) that had "polymorphism" so explained the function. Eventually eyes went back to normal thank goodness.

May or may not be relevant to Potiga for me, but will discuss with doc.

Best, Zimichael

 

[Mpt]

More of a general point than a comment about retigabine… I have greatly admired ATEOS for taking his treatment in his own hands. Granted getting retigabine was pretty easy for me because of a physician in my family who can see how much I've suffered and literally told me he would write a prescription for basically anything. I think any Dr. treating a patient for intrusive tinnitus should be willing to write off-label prescriptions repeatedly within reason because no one knows anything for sure regarding tinnitus and this is how knowledge is gained. I think the whole ge habituation ATA/CBT/TRT crowd have really been a hindrance to a cure because of the focus on therapies to reduce discomfort. I'm not saying this doesn't have a place, sound enrichment and reading jastebroff actually helped my mind set when I was in the darkest place with this. But sadly the onus for curative treatment or treatments giving substantial relief falls on us to go out and basically experiment with different drugs. Just my 2 cents. Think how helpful it would be to have 30-40 people (data points) for all sorts of neurological medications effect on tinnitus.

 

[Zimichael]

aMpt...Very, very, aptly summed up in every respect...for me! Repeat...for me.
Everyone has their own path in this and I respect that, but after the rather vast amount of time and sh*t I have been through with T, then T + H, I have some deep experiential opinions that feel pretty much like 'facts' to me.
And yeah, my doc is head of a group that is just about all "off label" as they specialize in all the poor SOB's that the regular docs give up on.

Take care. Zimichael

 

[cullenbohannon]

We don't agree on everything when it comes to tinnitus but congrats man. Hope to god it continues this way for you. @Mpt

 

[jazz]

@Mpt I am so happy for you and respect what you're doing. After my original post, however, I found additional information that made me reconsider the drug. That information pertains to the FDA's safety sheet about Retigabine. If people want to try the drug, they need to read this sheet. According to the FDA, Retigabine's side effects include turning blue and possible blindness. These side effects are significant and may not be reversible:

http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf​

So, again, I am very happy for you and really the entire tinnitus community. This is great information. And because you've had tinnitus over six months, maybe this class of drugs--potassium channel modulators--will work on us chronic sufferers too! If so, it means that Autifony's drug will work on chronic tinnitus.

Please keep us posted on your recovery and any additional side effects.

 

[lapidus]

Yikes!
Now that I know about the potential side effects I'm not sure anymore if it's worth trying. Kudos to you Mpt for having the guts to go for it though.

 

[Grace]

@Mpt I am so happy for you and respect what you're doing. But if other people want to try the drug, it's important they read the FDA's warning sheet. Turning blue and facing possible permanent blindness are significant issues that may not be reversible:

http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf​

So, again, I am very happy for you and really the entire tinnitus community. This is great information. And because you've had tinnitus over six months, maybe this class of drugs--potassium channel modulators--will work on us chronic sufferers too! If so, it means that Autifony's drug will on chronic tinnitus.

Please keep us posted on your recovery and any additional side effects.

Permanent blindness? :-/ ehhhh i would take hardcore T over risking my eyes... Certain things are just not worth risking. Why risk one thing for another.. And in the end something worse could happen like being stuck with T.. And blind. Definally not worth it in my opinion. If it were just simple side effects then maybe but hell no nothing with my eyes! Habutation sounds great conpared to that. But good luck anyone that would try this and really think about it before you do so. Glad for your success @Mpt but for the sake of your eyes be careful!!!!!!!

 

[jazz]

Researchers at the University of Pittsburgh are working on a similar drug that does not have these side effects and may also help people with chronic pain. Several TT members do have tinnitus-associated facial pain. It is likely such a drug would also alleviate their pain.

Here is an excerpt from an 2013 article that appeared in Science Daily:

An epilepsy drug shows promise in an animal model at preventing tinnitus from developing after exposure to loud noise, according to a new study by researchers at the University of Pittsburgh School of Medicine. The findings, reported this week in the early online version of theProceedings of the National Academy of Sciences, reveal for the first time the reason the chronic and sometimes debilitating condition occurs.

...

The team focused on an area of the brain that is home to an important auditory center called the dorsal cochlear nucleus (DCN). From previous research in a mouse model, they knew that tinnitus is associated with hyperactivity of DCN cells -- they fire impulses even when there is no actual sound to perceive. For the new experiments, they took a close look at the biophysical properties of tiny channels, called KCNQ channels, through which potassium ions travel in and out of the cell.

"We found that mice with tinnitus have hyperactive DCN cells because of a reduction in KCNQ potassium channel activity," Dr. Tzounopoulos said. "These KCNQ channels act as effective "brakes" that reduce excitability or activity of neuronal cells."

...

"This is an important finding that links the biophysical properties of a potassium channel with the perception of a phantom sound," Dr. Tzounopoulos said. "Tinnitus is a channelopathy, and these KCNQ channels represent a novel target for developing drugs that block the induction of tinnitus in humans."

The KCNQ family is composed of five different subunits, four of which are sensitive to retigabine. He and his collaborators aim to develop a drug that is specific for the two KCNQ subunits involved in tinnitus to minimize the potential for side effects.

"Such a medication could be a very helpful preventive strategy for soldiers and other people who work in situations where exposure to very loud noise is likely," Dr. Tzounopoulos said. "It might also be useful for other conditions of phantom perceptions, such as pain in a limb that has been amputated."​

Reference:

http://www.sciencedaily.com/releases/2013/05/130527153701.htm

 

[Ike]

I have had hectic T for about as long as mtp and was considering going for this treatment but after weighing the side effects don't think I will go through with it.I may live to regret it.All the best mtp. Wish I had the balls.

 

[Mpt]

sorry to beat a dead horse here, but something else to report...my t was reactive.. anytime I went to loud public places, etc it would get louder and I got a shearing sound on top of my usual tinnitus, I went out to eat lunch with some guys for work at a buffalo wild wings (which for those not in the US is a sports bar) it was packed and there was decently loud music... I've been here several times since gettting tinnitus and it would get really reactive for a couple hours afterward... just got back and I'm sitting in my relatively quiet office right now and there is nothing, no sounds at all