Retigabine (Trobalt, Potiga) — General Discussion

[Telis]

Tinnitus is as I am on 100 mg (no side effects of trobalt) getting worse and worse, as i slow to the end... I don't know is it temporary or permanent increase of tinnitus after stooping retigabine but it is over limit that i can handle, it is pure agony. I lowered to 100 mg few days ago, and day by day condition is getting worse. It is worse than before start with retigabine.

Maybe your system is going through temporary withdrawal? Maybe it is worth looking at a slower taper?

 

[FERNANDO GIL]

Hi all
Found they sell it in Portugal.
And not so expensive.
Now if i decided to try, just need find someone to pass the prescription.

 

[SoulStation]

Thanks so much @Rhea and @Christian_B , your messages mean a lot to me. Love you guys
I am glad I can be useful to the community and make a difference.
It's something I am considering to do more and more in my life. I actually started a big project a while ago that is probably going to redirect me to neuroscience.
(I have been drifting for quite a while in behavioral sciences, graph theory, and bio-inspired computing in the video game industry)

enough off topic !

@SoulStation , first I have to say that I have a lot of respect for you sticking to your musical career with a T., I can totally relate as I was a musician myself, but I did not have your courage, and gave up on music. Thumbs up man.

That being said, as I am sure you know better than me, it's a dangerous, very dangerous lifestyle as it has great chances of reinforcing your T. over the time.
We all agree that a cure is near, but it's important to be as prudent as possible until it comes to Market. you got balls.

For the Trobalt I had a couple of back and forth with various neuroscientist friends and it seems critical to go very very very very gradually with this drug. The dosage is key and should have at least 7 days buffer between each increase. Each increase should be no more than 150mg. The treatment has to be taken several weeks to show some effects, my doctor told me not to expect anything concret before the 3rd week.
Unfortunately because of my location I did not have access to the drug, I am still trying but I failed to import it from Europe.

As explained in another thread your brain will show some resistence to the drug and somehow protect the T. (through plasticity inertia) as it thinks that it's a normal state.
So providing the drug works as intended, it will help to control spikes in the short term, but will take several weeks (up to 16 weeks) to offer lasting effects on the T. level. This effect on the level might not be the same for everyone as the drug is not specific enough. (I wrote a lot about this)

Bottomline from what I can read the dosage was not right, it was too much too quickly and you can't see results on such a short period.

For the side effect the blurred vision I strongly suspect the changes in sodium and calcium ions in neurons induced by the increase of Potassium. I have to do some research about that, but it's most likely a solid theory, if this is the case it means it would be absolutely reversible. If it's something else, blured vision is rarely irreversible.

Last be not least the long term side effect (2 to 4 years): the blue skin. My theory is that it's caused by a higher than normal level of methemoglobin. If potassium channels are too dominant, they alter sodium channels and blocked sodium channels lead to chronic methemoglobinemia. (it can happen with lidocain infusion as example, lidocain is a strong sodium channel blocker) It's totally curable tho.

PS: no alcohol with trobalt, it has terrible interactions, not even a beer.

@benryu ---Thank you so much for your detailed input on this. You are thorough and generous with your time. Your posts are optimistic and realistic. The more I think about it the more I feel like this is right for me since I do play music in a loud environment. I think since the Potiga has shown to be preventative towards noise-induced T in the animal model so it could be a great drug for a musician who could potentially incur some sound above the "safe" level (though I always wear my 25 db musician plugs and have an actual Db Meter with me)Would you agree?

 

[rtwombly]

@benryu ---Thank you so much for your detailed input on this. You are thorough and generous with your time. Your posts are optimistic and realistic. The more I think about it the more I feel like this is right for me since I do play music in a loud environment. I think since the Potiga has shown to be preventative towards noise-induced T in the animal model so it could be a great drug for a musician who could potentially incur some sound above the "safe" level (though I always wear my 25 db musician plugs and have an actual Db Meter with me)Would you agree?

It's a pretty intense medication, and it takes time to build up in your system, so that's probably not a realistic application. I asked for it in a neurology office with two MDs and several PAs, and. They had all stopped prescribing it for epilepsy, its target disease, due to side effects and disappointing results.

 

[SoulStation]

It's a pretty intense medication, and it takes time to build up in your system, so that's probably not a realistic application. I asked for it in a neurology office with two MDs and several PAs, and. They had all stopped prescribing it for epilepsy, its target disease, due to side effects and disappointing results.

I would plan on taking it in a slow taper up course. Based on the literature I have found on it. I highly doubt my psychiatrist will prescribe it. She probably doesn't know what it is.
Buts its worth a shot. If not her, my GP migh prescribe it. It doesn't hurt to try.

 

[SoulStation]

It's a pretty intense medication, and it takes time to build up in your system, so that's probably not a realistic application. I asked for it in a neurology office with two MDs and several PAs, and. They had all stopped prescribing it for epilepsy, its target disease, due to side effects and disappointing results.

How is it going with the other stuff they gave you (that you're taking with the NAC and ALA)?

 

[Christian78]

Sorry to hear that.

Do you have antecedent of stress induced T. ?

Yes, I have rage inside, cant speak, today is little better. I hate this thing. If you want to hurt someone so bad just wish him severe tinnitus, and it is such suffering , and pain, loss, person become emotional invalid, phisical invalid, mental invalid. it is terrible...

 

[Christian78]

Maybe your system is going through temporary withdrawal? Maybe it is worth looking at a slower taper?

Maybe, it is better today, and i got 2 new box, i suppose it presses my 6 mg Valium i use. I used much more Valium but i lover it to this dosage and last 2 months i did not lower at all. It is to be supposed i get higher concentration of Valium and with reduce of Trobalt I get Valium too reduced but... one never know.

And honestly concerning huge methane blast in Sibir area (Russia) (those holes that appears as methane is being released to to atmosphere) + UN warning signed by 772 scientist that we have several years left before drastic climate change well... then one don't even care, we get medicine just to get to end of life as we know it to enter one hard life struggle much harder, and what then if they don't produce meds... future is definitely unknown and i dare say negative

 

[undecided]

@Christian78 that valium seems to be working nicely there, why bother with the Trobalt?

Hang in there, bro.

 

[Christian78]

@Christian78 that valium seems to be working nicely there, why bother with the Trobalt?

Hang in there, bro.

Valium works 3 weeks, then yo need to increase dosage, and again and again. I started tapering down in janualy and from some huge dosage i am on 6mg...

Valium is destroyer of Gaba, cognitive memory, muscles, neurons, it makes permanent damage.

 

[Christian_B]

@Christian78 I doubt mankind as we know it is about to see the end.. Another thing i dont see that topic belongs in this thread.

This maybe sound harsh but i dont think Benzos will save anyones misery.. Just take a look at the side effects which are things people take the Benzos for.. Depression, anxiety etc etc

Drugs are not always an answer to things..

EDIT: i might explained myself a bit wrong there... What i mean is that benzos dont save anyone from T, being down is never fun but the withdrawal itself makes you more depressed, and who wants to take benzos your whole life? i wont for sure.

 

[benryu]

Yes, I have rage inside, cant speak, today is little better. I hate this thing. If you want to hurt someone so bad just wish him severe tinnitus, and it is such suffering , and pain, loss, person become emotional invalid, phisical invalid, mental invalid. it is terrible...

My T. is also increased when I am under too much stress/ frustration, it's a negative spiral that I try to avoid (too much stress => more T. => more stress => more T.)

When this happens, I try to do much more sport than usual, I put a little white noise background with some music I like, I take a few days to relax.

T. is a terrible problem, but you won't have it for the rest of your life, we are near a cure, or at least a relief, we all know how hard it can be, but it's not the moment to give up and let just a sound fuck you up.
It's just a sound man, anoying, disturbing, all you want, but just a sound.
You are not alone I am sure you have your family, friend and at least this community.

You had it since 2013, it's a small time in comparaison to your entire life, we'll make it through and in a few years, you'll look back and think it was just a bad dream.

Last but not least I see T. as a trial for myself and also a training. Dude after a few years with T. you can handle serious shit, it gives you (the hard way) patience, resistance and a capacity to take anything in your stride without blinking an eye.

Keep strong.

 

[dan]

T. is a terrible problem, but you won't have it for the rest of your life, we are near a cure, or a least a relief,

Keep strong.

WE ARE ???

 

[Christian_B]

WE ARE ???

We as in the world

 

[mmacabre]

we are the world

 

[SoulStation]

So I went to my psychiatrist today with some CRAZY good literature on Potiga/Retigabine/Trobolt and she agreed it sounded like a good drug for me but said she couldn't prescribe it. She said it's not her area of expertise and I understood 100 % percent. She said I should see a neurologist if I wanted something like that. So I'll go down that road soon I suspect if I can't get my GP to prescribe it (which I am guessing he won't). Chances are I probably won't get it in the end but it doesn't hurt to try. I have been having a good few days though...the signal has been relatively low. I will enjoy it while it lasts!

 

[Viking]

I will never understand the fury of neurologists against this product. Are currently on Tolep and they have no problem to prescribe these "bombs" chemical far more dangerous than the Trobalt. I'll never understand. They give me everything .... but when I asked the Trobalt was a pilgrimage. I think of all the false facts about clinical trials for antidepressant drugs to market them quickly and have huge economic revenues. I hope autifony "jump" some passage so we stop making useless crap!

 

[Telis]

I will never understand the fury of neurologists against this product. Are currently on Tolep and they have no problem to prescribe these "bombs" chemical far more dangerous than the Trobalt. I'll never understand. They give me everything .... but when I asked the Trobalt was a pilgrimage. I think of all the false facts about clinical trials for antidepressant drugs to market them quickly and have huge economic revenues. I hope autifony "jump" some passage so we stop making useless crap!

I 100 percent agree...they hand out mind altering, brain damaging toxic chemicals like it's candy.
The system is fucked, and driven by $$$...follow the money trail.

 

[SteveToHeal]

I know T goes down when zero stress and basically in 24/7 meditation. But seriously, who lives like that? One minor stress and T goes up. Its no way to live.

 

[Telis]

I know T goes down when zero stress and basically in 24/7 meditation. But seriously, who lives like that? One minor stress and T goes up. Its no way to live.

You are lucky you can find those moments. But yeah I agree!

 

[Viking]

Jasterboff with one theory is able to stop research for 30 years. How do pharmaceutical companies to do their clinical trials? THERE ARE NO BLOOD TESTS MEASURING THE LEVEL OF SEROTONIN .... but when I'm going to complain about my tinnitus, they give me antidepressants or mood stabilizers! What is the connection? They sell these things based on SIMPLE HUMAN EMOTIONS! I need a serenity REAL! I have a sound that's been bugging me for 8 years! Whenever I complain about "my fault" because I do not take antidepressants !!! I have taken them! BUT DO NOT NEED TO ANYTHING! I would like to see them in our shoes. Sorry for the outburst. Goodnight (so to speak) at all!

 

[Mpt]

"Jastebroff with one theory is able to stop research for 30 years".....

Trt shares many attributes of a cult, no doubt about that, people like nagler have to know deep down that the " model" is terribly flawed as illustrated by his blissful and willful ignorance concerning studies which have discredited the heller and Bergman study which is a cornerstone of jastebroffs work (wouldn't you think jastebroff could do the study on his own to verify?- he never did because a deeply flawed study fit his narrative- the hallmark of a true charlatan... and yes the model is just a narrative, no hard science backing up anything, I just hope that in time these people are viewed as the charlatans they really are, much like people selling potions before the modern age of medicine are viewed now)

 

[RichL]

"Jastebroff with one theory is able to stop research for 30 years".....

Trt shares many attributes of a cult, no doubt about that, people like nagler have to know deep down that the " model" is terribly flawed as illustrated by his blissful and willful ignorance concerning studies which have discredited the heller and Bergman study which is a cornerstone of jastebroffs work (wouldn't you think jastebroff could do the study on his own to verify?- he never did because a deeply flawed study fit his narrative- the hallmark of a true charlatan... and yes the model is just a narrative, no hard science backing up anything, I just hope that in time these people are viewed as the charlatans they really are, much like people selling potions before the modern age of medicine are viewed now)

This was my very point, if not directly, of the thread that I started a while ago and that got locked because I started to get personal attacks (which have been deleted) but the thread remains.

https://www.tinnitustalk.com/thread...ryone-will-start-to-experience-tinnitus.5199/

@Mpt , I agree with you completely!

 

[Hudson]

Let's keep things related to the topic on hand and not get involved in an argument.

 

[SteveToHeal]

Let's keep things related to the topic on hand and not get involved in an argument.

Well i read the previous now locked thread that was posted by @RichL. A very interesting read. And for the record @RichL, I agree with you.

However, I have to agree with @Hudson - Let's keep things related to this topic, else this thread runs the risk of also being locked, if we resume that debate. I think a lot of people on this thread are more interested in the results of people taking and preparing to take Retigabine. The whole Jastreboff TRT BS debate will have to wait another day. Let's not derail this one. Thanks guys.

 

[RichL]

Let's keep things related to the topic on hand and not get involved in an argument.

Well i read the previous now locked thread that was posted by @RichL. A very interesting read. And for the record @RichL, I agree with you.

However, I have to agree with @Hudson - Let's keep things related to this topic, else this thread runs the risk of also being locked, if we resume that debate. I think a lot of people on this thread are more interested in the results of people taking and preparing to take Retigabine. The whole Jastreboff TRT BS debate will have to wait another day. Let's not derail this one. Thanks guys.

Agreed!

 

[Christian78]

I got new boxes to try longer period but i started yesterday directly on 200 mg, i was using 100 for 5 days and before that 200 mg.

This morning i used some acrn sounds that SOMETIMES help with this new t that i got 6 months ago and who is 300% stronger than initial. Anyway this morning after taking a pill and listening the acrn because when i woke up i had pretty nasty sound in left ear....

And now i hardly hear t, only in silent room i can hear it. T is playing with me, I never went low, well this sound like my initial tinnitus. And on him I got habituated.

sorry if I a am bothering you with this post, but i just wanted to say 200mg x3 does a miracle for me.

Thank you for reading

To add my t does no react on anything, sometimes a 0.5 xanax or 0.75 clonazepam, but not in sound it makes me relax so much i dont care about sound then, no medicine ever made my tinnitus go under (lower intensity) , i used 20 different meds, and at least so much homeopathic, and 25 acupuncture, yoga i reached a lvl 3(of 6), floating in floating tank... nothing ever made my t be forced to go under except retigabine.

 

[RaZaH]

That is awesome dude !!! !
Keep us posted .
I am still fighting to get this drug but it is hard ! Sucks.

 

[Christian78]

@Christian78 If you take a look at the dosage chart that @benryu posted, it may be important that you taper down slowly as well. If you are currently at 200mg, three times a day (total 600mg a day), then you might consider reducing the dosage by 100mg total a week, until you get to 150mg.
I think the fact that your T stopped for some time means that it is possible that the drug is having an effect. When are you considering taking the course again in Sweden?

@just1morething , the urinary retention issues are pretty scary. We don't know yet what @Viking has just yet, hopefully he will update soon. I asked a few doctors (I have a ton in my family and my best friend is a doctor), and they all say that urinary retention is very rare as a side effect to any drug, and it is usually only something you have to worry about if you are old (like over 60).

I scanned those 2 papers but anyway if you read you will see what is start dosage...

 

[dan]

Glaxo in May withdrew its epilepsy drug Trobalt from the German market for newly diagnosed patients after local authorities said it would compare it with two generic medicines. Photographer: Simon Dawson/Bloomberg

European Crisis Spurs Drugmakers to Pull Back Treatments
The European financial crisis is creating a tug-of-war between the pharmaceutical industry and governments as austerity measures clamp down on reimbursements, especially for new drugs.

GlaxoSmithKline Plc (GSK) and Boehringer Ingelheim GmbH are among drugmakers delaying introductions or partially withdrawing their products in markets including the U.K. and Germany as governments raise the bar on what they're willing to cover.

In Europe, which accounts for about 30 percent of industrywide sales, governments have turned to price cuts and close scrutiny of new drugs' benefits to help rein in budget deficits amid austerity measures. Cost reductions may continue in 2013 after economic growth forecasts for the region declined, Bloomberg Industries analysts said Nov. 15.

Blog: To Fix the Child Refugee Crisis, End the War on Drugs
"More than ever it's important to understand the benefit of these new products," said Jose Aymami, a fund manager at Merchbanc in Barcelona, which holds shares in Roche Holding AG (ROG), Bristol-Myers Squibb Co. (BMY:US) and ThromboGenics NV (THR), among other health-care stocks. "We are concentrating on companies that will get a payback for development costs."

The European Medicines Agency, the European Union's drug regulator, makes recommendations to the European Commission on whether drugs should be approved for marketing in the 27-nation bloc. Once cleared, drugmakers then negotiate with payers in each country over pricing.

Pricing Law
In Germany, companies are required to show that a new product works better than older medicines before they can charge a premium for it. The review process falls under a 2010 drug pricing law passed with the intention of saving 2 billion euros ($2.6 billion) a year.

Story: Europe Gets Serious in Latest Round of Russia Sanctions
German authorities said Boehringer Ingelheim hadn't compared its diabetes treatment Trajenta with appropriate existing treatments in a first-round evaluation in March. Boehringer started a second review process in September, and if the product is given "additional benefit" status, the Ingelheim, Germany-based company will proceed with pricing negotiations. Otherwise, "we will consider our next steps carefully," spokeswoman Judith von Gordon-Weichelt said in an e-mail.

Glaxo in May withdrew its epilepsy drug Trobalt from the German market for newly diagnosed patients after local authorities said it would compare it with two generic medicines. Glaxo plans further pricing discussions with Germany to make Trobalt available to new patients, the London-based company said this week.

'Punitive Measures'
"Recent years have seen the introduction of a series of punitive measures in Germany," Richard Bergstroem, director general of the European Federation of Pharmaceutical Industries and Associations, said in a statement. "This is not good for German patients and not good for the country as it strives to retain companies and attract new investments."

Story: Why Walgreen Couldn't Risk Quitting the U.S. for Lower Taxes Abroad
More than two dozen therapies have gone through benefit assessments in Germany, with companies leaving the market in four cases, according to the industry group VFA.

The first product to go through the process, AstraZeneca Plc (AZN)'s Brilique blood thinner, was found by German reviewers to have an additional benefit compared with older drugs for patients with mild heart attacks or chest pain. In total, five products have shown a considerable additional benefit, nine a minor additional benefit and three a non-quantifiable additional benefit, according to the G-BA, the German body that makes drug reimbursement decisions.

'Valid Basis'
"The results show that this compulsory and fast comparative assessment in the first year of marketing is producing a valid basis for therapy decisions in health care and price negotiations between industry and statutory health insurance providers," G-BA Impartial Chairman Josef Hecken said in an e-mailed statement.

Story: Harvard vs. Oxford in a Multibillion-Dollar Cholesterol-Drug Cage Match
In the U.K., the biggest purchaser is the state-run National Health Service. A separate body formed in 1999, the National Institute for Health and Clinical Excellence, known as NICE, advises the NHS on which treatments represent value for money.

Between January 2010 and August of this year, 26 drugs, or 33 percent of 79 approved by the European Medicines Agency, were rejected by NICE, according to a Bloomberg Industries analysis. Of the 26 rejections, 15 were based on insufficient benefit to justify the cost, even though some drugmakers offered to discount their prices, the analysis found.

NICE Rejections
Among those that NICE didn't recommend were Glaxo's breast- cancer treatment Tyverb and Benlysta for lupus, though final guidance hasn't been issued on the products.

Story: Stop Squabbling, Mom Tells Troubled Biotech: 'Just Get My Kid the Drug'
With drug prices in the U.K. among the lowest in Europe and the rate of adoption of new medicines significantly lower than on the continent, NICE isn't adequately valuing innovation, said Stephen Whitehead, chief executive of the Association of the British Pharmaceutical Industry.

"It is increasingly becoming difficult to make any kind of return on drug development," Whitehead said in an interview. "Patients are also not getting optimal treatment" with delayed decisions or rejections of the latest therapies.

Price comparisons between countries can be misleading because some require patients to pay for part of the cost of some medicines, while in the U.K., many people are eligible for free treatment, NICE said in an e-mailed statement.

"NICE has approved some of the most expensive medicines made available in recent years, including Herceptin for breast cancer and Sutent for renal cancer," the agency said.

French Cuts
France said last month it's planning to cut 2.1 billion euros in health-care expenses next year by pushing drug prices lower, urging doctors to write fewer prescriptions and spending less on hospitals.

Such measures are easier to implement than reorganizing hospitals and other system-wide changes, said Graham Lewis, vice president at consulting firm IMS Health Inc. in London.

"Governments and politicians are unwilling to recognize how inefficient things are," he said. "Structural changes are politically very difficult to deliver."

Programs to rein in health-care costs will lead to between a 1 percent decline and 2 percent growth in European spending on medicines from 2011 to 2016, compared with an almost two-fold increase in emerging markets, according to IMS Health.

Orphan Drugs
There are some exceptions to the cost-cutting rule, especially among treatments for rare diseases, said Rajesh Varma, who helps manage 5 billion euros for DNCA Finance SA in Paris. Sanofi's Genzyme unit has even been able to raise prices on its orphan drugs, which can cost "a couple hundred thousand dollars a year," he said.

"You have to look at how long these drugs have been around, if there are generics around, if they are orphan drugs," Varma said. Complaining about pricing pressure "is a lot of hot air."

Investment opportunities can still be found even among companies with substantial sales in Europe, said Merchbanc's Aymami.

His picks include Basel, Switzerland-based Roche, which will continue to see growth from its existing and forthcoming cancer drugs; Heverlee, Belgium-based ThromboGenics, whose Jetrea eye treatment was approved in the U.S. last month and may be cleared in Europe this year; and New York-based Bristol- Myers, whose Eliquis treatment developed with Pfizer Inc. (PFE:US) for preventing strokes was approved in Europe this month.

More Acquisitions
To help cope with declining revenue, Pfizer, Eli Lilly & Co. (LLY:US), Bristol-Myers and AstraZeneca will probably increase spending on acquisitions beyond their normal budgets because of "deep operating challenges coupled with deep pockets," Fitch Ratings said last week. Partnerships such as ViiV Healthcare Ltd., a joint venture between Glaxo, Pfizer and Shionogi & Co. focused on HIV medicines, may also be replicated by others, said Thomas Rudolph, principal at McKinsey & Co. in Stuttgart, Germany, which consults for all of the top 20 drugmakers globally.

"We'll see a lot more industry and site consolidation," Rudolph said. "Efficiency reserves are there, and companies haven't been forced to look at them very closely until now. They need to be a lot bolder about it."