Retigabine (Trobalt, Potiga) — General Discussion

[tomm]

@Mpt So pleased for you that you're cured . Do you have any close up pictures of the box and blister packs you used please? Seems there might be some differences in the manufacturers.

If I have it right (after reading over 2000 posts!), your dosing regimen was:

100mg 3x/day for 3 days
200mg 3x/day for 3 days (started responding here)
300mg 3x/day for 3-4 months

Taper by 50mg/week until reaching zero.

You were getting your eyes checked for pigment changes every 6 weeks as well (with no problems)?

I'm considering ordering 100 grams (about 2.5 months worth) from MerryChemical at this point although USD$3000 is a bit more than I'm comfortable risking on an unknown supplier.

Does anyone have any unused or leftover boxes they'd be willing to part with?

 

[111]

I'm considering ordering 100 grams (about 2.5 months worth)

I thought you are on the 101 trial starting on the 3rd Nov, why not wait to complete that trial first ?

 

[tomm]

I thought you are on the 101 trial starting on the 3rd Nov, why not wait to complete that trial first ?

After further reading I'm less confident in the esketamine injections than the KV channel modifiers, plus the risk of getting the placebo and not starting any 'real' treatment until 4 months after onset is very concerning - dealing with it now, quickly after the start (like mpt) seems the best way.

If the injections start working after 1 month I can give it to someone else, otherwise it's ready to try while still in the acute phase. I feel like I have to cover my bases while it's new. I'm not ready to accept it as permanent yet.

 

[Danny Boy]

@Mpt So pleased for you that you're cured . Do you have any close up pictures of the box and blister packs you used please? Seems there might be some differences in the manufacturers.

If I have it right (after reading over 2000 posts!), your dosing regimen was:

100mg 3x/day for 3 days
200mg 3x/day for 3 days (started responding here)
300mg 3x/day for 3-4 months

Taper by 50mg/week until reaching zero.

You were getting your eyes checked for pigment changes every 6 weeks as well (with no problems)?

I'm considering ordering 100 grams (about 2.5 months worth) from MerryChemical at this point although USD$3000 is a bit more than I'm comfortable risking on an unknown supplier.

Does anyone have any unused or leftover boxes they'd be willing to part with?

2 months supply is $3000? Is that a typo? I asked someone how much it would cost and for 40g it would cost £187 which is 1 month supply. It's about the same price for the actual drug in capsules in the UK. So it may be worth buying it from them.

 

[tomm]

2 months supply is $3000? Is that a typo? I asked someone how much it would cost and for 40g it would cost £187 which is 1 month supply. It's about the same price for the actual drug in capsules in the UK. So it may be worth buying it from them.

No typo, that's the quote from the supplier listed way back in the thread. Who did you get the £187 quote from? If they don't need a prescription I'll order today and test it myself!

 

[Dr. Nagler]

I have not been following this thread, save for trying to respond in some reasonable fashion when questions are directed at me (e.g., Post #2074).

That said, I do have some questions for you kind folks ...

• How many individuals on this board have achieved meaningful relief from tinnitus and attribute that meaningful relief specifically to retigabine?
• How many people on this board tried retigabine and discontinued the drug because they felt it was ineffective?
• How many people on this board tried retigabine and discontinued it because of the side effects?
• Are any clinical trials underway trying to determine the efficacy of retigabine in tinnitus?

I pose these questions because if I were going to ask my doctor to prescribe the drug for me for off-label use on a compassionate basis (again, go back to Post #2074), I would expect him or her to want that sort of information. I can tell you that if somebody came to me with such a request (i.e., wanting me to prescribe a drug for off-label use based on what he or she read on an Internet message board), I would not even begin to consider the request without that information.

stephen nagler

 

[Danny Boy]

No typo, that's the quote from the supplier listed way back in the thread. Who did you get the £187 quote from? If they don't need a prescription I'll order today and test it myself!

You don't need a prescription at all. So go ahead. Also, did they tell you their prices? And 111 told me they wanted like 600 dollars for 80 grams, so naturally half that (40g) 300 dollars in pounds is £186.47. Also buy a months worth first, so you can make sure you have the real deal...They do send samples, so would assume it is the real deal. Thankfully, we can finally get a stable supply and get cured, hopefully, in the processes.

 

[amandine]

@DannyBoy

Have you got the website addresss where you can get the retigabene please? Or. if that is not allowed on this forum. then please can you message it to me privately?
Many many thanks
amanda

 

[cullenbohannon]

Are any clinical trials underway trying to determine the efficacy of retigabine in tinnitus?

@Dr.Nagler I believe that there is research out of the U of Pittsburgh to tweak the drug so it has less side effects, and this what i think autifony is based of is some ways but they say its more specific to the potassium channels that effect hearing. I believe the trials for that should have started this month in the UK.

 

[Dr. Nagler]

@cullenbohannon, I hear what you are saying.

But if I understand the flow of things in this thread correctly, some people want to obtain retigabine for off-label use based on what they have learned on this board, but they thus-far met with resistance on the part of the doctors they have approached. Developing clear and unambiguous answers to the four questions I posted in Post #2107 will go a long way towards helping them in their effort.

I am one of the very few doctors in the world who has gotten to know severe knee-buckling gut-wrenching ax-in-the-head want-to-die overwhelming intrusive tinnitus up close and personal. And without answers to those four questions even I would be hard-pressed to prescribe the drug to a tinnitus sufferer seeking an off-label prescription.

stephen nagler

 

[SweetPeach]

@cullenbohannon, I hear what you are saying.

But if I understand the flow of things in this thread correctly, some people want to obtain retigabine for off-label use based on what they have learned on this board, but they thus-far met with resistance on the part of the doctors they have approached. Developing clear and unambiguous answers to the four questions I posted in Post #2107 will go a long way towards helping them in their effort.

I am one of the very few doctors in the world who has gotten to know severe knee-buckling gut-wrenching ax-in-the-head want-to-die overwhelming intrusive tinnitus up close and personal. And without answers to those four questions even I would be hard-pressed to prescribe the drug to a tinnitus sufferer seeking an off-label prescription.

stephen nagler

could you prescribe retigabine to us who would like to try it?...
over skype?

 

[Dr. Nagler]

could you prescribe retigabine to us who would like to try it?...
over skype?

No. I'm really not comfortable doing that.

But what I have done is provide a template for you to use in approaching your own doctors, and I have listed four questions for you to answer so that you will be in the best possible position to be successful in your efforts to get your doctors to prescribe the drug for off-label use.

stephen nagler

 

[dan]

No.

stephen nagler

Just another doctor I guess

 

[Telis]

Why is there so much hype about this drug here at TT? I have kept up with this thread and the results with the exception of Mpt and maybe Christian seem to be less than impressive so far. Also, it doesn't seem to be the safest of drugs. Plus the fact (as far as I know) there has never been any testing on humans to determain efficacy. I understand the link between aut00063 and retigabine, so I do get the speculation (makes sense) but still don't know if it's enough to really get excited about at this point. It's a cool experiment and I think people should keep trying it but some are acting like this is the golden ticket to silence and it's going to work for sure, seems a little bit extreme at this point.

Just as many people (if not more) claim that certain vitimans and supplements help reduce their tinnitus.... So why the retigabine hype?

Maybe I'm missing something everyone else is picking up on?

 

[MattK]

Just another doctor I guess

Dan be reasonable. When it comes down to it, @Dr. Nagler doesn't know any of us personally, let alone evaluate us. Can you imagine what would happen to him if he prescribed something to someone he has never met over the internet and it turned out that person had malicious intent?

I know we're all suffering, but we shouldn't put that type of pressure on him. And if I were a doctor I'd be apprehensive about that too.

 

[MattK]

Why is there so much hype about this drug here at TT? I have kept up with this thread and the results with the exception of Mpt and maybe Christian seem to be less than impressive so far.

You're right. I think the hype is more that it helped Mpt, and now everyone else is hoping that they will be just as lucky as he was. When people suffer, we tend to cling to every bit of good news out there, even if the chances are slim. Heck, I'd probably drink dog urine every day for a month if I thought there was even a slight chance it could work.

 

[RichL]

While I agree that there have been the odd few who are, or seem to be getting a little excited, (maybe myself included), I do think that there is good reason for them to do so, especially given the fact that there is nothing else out there that offers half of what Retigabine may offer to us Tinnitus sufferers.

Admittedly, as has been covered before in this thread, this drug is more a shotgun approach than the AUT00063 drug stemming from what is seemingly a proven theory about the cause of most, if not all Tinnitus.

IMO I think the excitement is warranted but should be attempted with caution.

Rich

PS, I should have wrote, "A theory with a fare bit of evidence indicating it's on the right track". (before the train spotters climb aboard)

 

[Telis]

While I agree that there have been the odd few who are, or seem to be getting a little excited, (maybe myself included), I do think that there is good reason for them to do so, especially given the fact that there is nothing else out there that offers half of what Retigabine may offer to us Tinnitus sufferers.

Admittedly, as has been covered before in this thread, this drug is more a shotgun approach than the AUT00063 drug stemming from what is seemingly a proven theory about the cause of most, if not all Tinnitus.

IMO I think the excitement is warranted but should be attempted with caution.

Rich

PS, I should have wrote, "A theory with a fare bit of evidence indicating it's on the right track". (before the train spotters climb aboard)

I agree the theory is there for sure...but just a theory at this point until proven effective on humans.

 

[Dr. Nagler]

You're right. I think the hype is more that it helped Mpt, and now everyone else is hoping that they will be just as lucky as he was.

I am absolutely thrilled that Mpt has achieved meaningful (and hopefully lasting) relief. Indeed, I am thrilled when anybody finds relief. It's wonderful!

Again, I have not been following this thread (now with over 2100 posts), so would somebody please explain what leads you to believe that Mpt's improvement was actually due to the retigabine.

Thank you.

stephen nagler

 

[MattK]

Again, I have not been following this thread (now with over 2100 posts), so would somebody please explain what leads you to believe that Mpt's improvement was actually due to the retigabine.

I haven't followed the entire thread either. But from what I understand, Mpt has been suffering from tinnitus since Jan 2014, and after two weeks of retigabine, his tinnitus got to a point where it was basically gone. Is that a coincidence, could it be that after 7 months of suffering with tinnitus, it finally went away on it's own and that just so happened to have occurred 2 weeks after retigabine? I guess that could be the case. But then again, if I have a headache and I take some Tylenol and if my headache disappeared in about 20 minutes, was it the Tylenol? Or was my headache going to go away in 20 minutes and the Tylenol didn't actually do anything?

I just find it too coincidental for it to go away on its own, unrelated to retigabine. But then again, that is within the realm of possibility, I suppose. Just like it could be within the realm of possibility that headaches go away on their own and it just so happens to be after taking Tylenol... and in fact, sometimes the headache remains even after taking Tylenol...

By, the way, just curious. But in light of some of the reports of retigabine helping tinnitus patients, does this make you think differently about the possibility of a tinnitus cure?

 

[locoyeti]

I doubt any doctor would go off of one success story. I think it is a better idea to go into the appointment with a good grasp of the underlying science, although that might be a bit dependent on your level of scientific knowledge. Presenting the doctor with some paperwork might help. Of all the papers I read, I found the Pathogenic Plasticity paper (http://www.pnas.org/content/110/24/9980) the most helpful in detailing the plausibility of retigabine in helping tinnitus sufferers. It also describes the fusiform cells in the DCN as being the primary culprit in causing and maintaining tinnitus (the accompanying Hamann papers http://www.pnas.org/content/109/21/8292.full.pdf+html and http://www.ncbi.nlm.nih.gov/pubmed/22085487 are also helpful).

The study that I tried to summarize a few posts back is a good resource (http://www.ncbi.nlm.nih.gov/pubmed/24681057) as it is a recent study (Jan 2014), and it deals directly with efficacy of retigabine on tinnitus models.

There are a ton of very informative papers on KCNQ, and I found (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697739/) to be particularly good.

All of these studies are on animals though, so you will (understandably) find some resistance in a lot of doctors.

Mostly though, I found that being very determined and knowledgeable really helped for me, but I think a good deal of it had to do with the fact that my doctor was very open minded. If you can convey the sense of how debilitating tinnitus has become to your life, and how optimistic you are that this drug will help you, I think the doctor may be more disposed to go out on a limb for you. Give them a clear sense of how you intend to take the drug (short term).

I think for the most part it will be very difficult to find a doctor that will write this prescription, and I feel it will have mostly to do with how predisposed your doctor will be to off-label prescriptions, and also on how well you can pitch it. Until we get far more people trying this and reporting results, I just don't think the anecdotal information will be valuable. I would suggest being vague- "There were some people on the internet who got great results on this drug". I doubt any doctor will actually spend their time digging through internet forums, it is more likely (but not by much) that they will read the literature that you give them (a few select papers is sufficient, don't give them a ton of papers).

 

[SoulStation]

This is from his report...
If I recall he was monitoring his T pretty vigorously and would check it in his car in his garage with the engine shut off...
His on set of tinnitus came after he got his ears syringed
I don't know of a conflict of interest. He seems like a pretty literal straight shooter.
Retigabine (Trobalt, Potiga) — User Experiences

Mpt
Progress Report Date:
Sep 11, 2014

Current Retigabine Dosage:
800mg a day

Current Side Effects:
tiredness

Current Tinnitus Severity:
1 out of 10

Changes in Tinnitus:
My tinnitus basically doesn't exist. I still considered myself as having tinnitus after 1 month on the drug. After two months in though, I can't hear my tinnitus even when looking for it.

Other Medications/Supplements:
nasonex nasal spray



Dr. N- I am also on this medication and have had some very good relief while it's in my blood. I have also had some side effects that have subsided which I didn't enjoy but I am continuing treatment at this time.

 

[valeri]

Well the bottom line is that no one so far had any deadly side effects, some experienced worsening, some no improvement, others got some relief from tinnitus.

I would say that even some relief is better than none, so far no other meds provided this sort of results.

While I can understand doctors position in prescribing this drug for tinnitus, if a tinnitus sufferer is desperate and his life depends on even a small relief, doctors should by all means be bit more flexible and understanding.

After all nothing in life is very black and white only!

 

[Dr. Nagler]

Thanks for the responses to my post above (#2120). I appreciate it.

stephen nagler

 

[jeannie]

they say tinnitus has the best chance of going away the first year so maybe that helped mpt? im not sure??

 

[SoulStation]

Thanks for the responses to my post above (#2120). I appreciate it.

stephen nagler

No problem. Thanks for your input on this issue.

 

[Telis]

My doctor will write me a prescription...I'm very desperate but for some reason I just don't see enough evidence to be sold on retigabine as a tinnitus treatment yet. Having said that I am still very hopeful, nothing more that I would like than to see than people getting real relief, myself included. I'm still open to the idea but I am also finding it tough to jump into a unknown drug based on what i know and have seen so far. Guess I'm just a skeptic.

Thanks to all the folks giving this a shot...I'm not out yet, just kind of on the fence at the moment.

 

[dan]

My doctor will write me a prescription...I'm very desperate but for some reason I just don't see enough evidence to be sold on retigabine as a tinnitus treatment yet. Having said that I am still very hopeful, nothing more that I would like than to see than people getting real relief, myself included. I'm still open to the idea but I am also finding it tough to jump into a unknown drug based on what i know and have seen so far. Guess I'm just a skeptic.

Thanks to all the folks giving this a shot...I'm not out yet, just kind of on the fence at the moment.

Well I guess you can live with it. I can't, I'm going to try it. A short 3 months course ain't gonna kill ya man. There are far worse drugs doctors prescribe. Look up side-effects of some of the commonly prescribed anti-psychotics (prescribed off-label to T sufferers), you'll be surprised.

 

[SoulStation]

Well I guess you can live with it. I can't, I'm going to try it. A short 3 months course ain't gonna kill ya man. There are far worse drugs doctors prescribe. Look up side-effects of some of the commonly prescribed anti-psychotics (prescribed off-label to T sufferers), you'll be surprised.

What antipsychotics are commonly prescribed?

 

[dan]

Depakote- i've personally spoken to a few T sufferers who got it Rx'ed off label.
Severe side effects of Depakote include liver toxicity and pancreatitis. Other potentially severe side effects include unusual bruising or bleeding, blisters, severe rash, confusion, difficulty swallowing or breathing, joint weakness, depression, and suicidal ideation.