Retigabine (Trobalt, Potiga) — General Discussion

[tomm]

@tomm @Danny Boy I think in the UK you'd probably need to see a neurologist to get Trobalt. My GP admitted to me that they don't know much about epilepsy drugs, I had to see a neuro to get the 4 epilepsy drugs I tried. They can be dangerous if you get the dosage too wrong, I have a permanent tremor due to a prescription error with Topamax months ago.

Thank you very much @65vwbus, I'll push for a referral - did you say anything particular to get to see a specialist like that? Sorry hear about the side-effect There's a running theme of of how determined people are to get the T resolved that they are exploring the boundaries of existing medicine.

Has anything worked well for you recently?

 

[SoulStation]

hey @Johno @SoulStation @Christian78 @undecided @Mpt can we get some updates please?

I'm still at where and have really not gotten any better since my last update but I am going through a lot career wise/emotionally right now and need to get my sh#t together. I have basically plateaued . I am trying to not monitor my T every 5 min. The central T Headis down from where it was before but I feel like I've heard some new tones come and go. A almost pulsing sub sound very faint and a slightly higher t sound. Neither are permanent but they are not TST.

 

[Dr. Nagler]

@Dr. Nagler I know you are US based and this may not be relevant for the rest of the world, but can you recommend a template or format/content of documents that a patient could bring to you that would cause you to consider and take seriously a proposal for a prescription that is out of your usual field please?

The person I would go to would be my primary care physician. I would bring a single sheet of paper with just the essential information on Retigabine including its chemical structure, its pharmacology, its approved uses, and its side effects. I would explain that there is some anecdotal evidence that Retigabine might be effective in tinnitus at such a such a dose and ask him if he would discuss it with one of his neurology colleagues with an eye towards arranging for me to obtain the drug for off-label use on a compassionate basis because I suffer greatly and have been thus far unable to achieve any meaningful lasting relief.

stephen nagler

 

[bedouin]

What sites are able to provide this without a prescription?

I wasn't even able to get the corticosteroid prednisolone from my local GP at the 72 hour mark or from an online UK GP consultation via 'pharmacy2u.co.uk', so retigabine prescription will be quite unlikely.

Be nice to have some lined up in case AM-101 doesn't work. *shudder* Perish the thought.

Agreed. I go for the AMPACT2 follow-up injections (real drug) on 4th Nov. If they don't work then I will start looking at getting Retigabine. Getting a prescription looks like a serious bottleneck. I think it is going to be a case of having enough evidence to hand to a GP to refer to a Neurologist, as outlined by Stephen Nagler.

 

[bedouin]

@tomm @Danny Boy I think in the UK you'd probably need to see a neurologist to get Trobalt. My GP admitted to me that they don't know much about epilepsy drugs, I had to see a neuro to get the 4 epilepsy drugs I tried. They can be dangerous if you get the dosage too wrong, I have a permanent tremor due to a prescription error with Topamax months ago.

Sorry to hear that happened. I hope that the tremor will dissapear in time.

 

[dan]

@Danny Boy ...Danny, I'm not sure you have been taking to heart what people have been telling you on this thread. I know you are 'hurting' and most of us know that place really well. However you are "short term T" and there are numerous other options open to you! I would suggest you take a hard look at those and not pin your hopes on this stuff, especially if you cannot get a doc to sign off on it.
These docs out there are not just afraid of Retigabine for zero reason...they are on the line if it goes "Boom" in your face. They see no big, controlled trials for Retigabine and Tinnitus, and despite the small body of evidence we have accumulated here it is from a total of less than 10 people with zero "control" a la normal science. This is not a "valid" reason for a doctor to take a huge risk on an "off label" psych' med. that has some pretty scary warning profiles. I sure would not prescribe it unless I knew my patient and their history very, very well.

I would leave Dr. Nagler out of this. He has already made his position on this drug clear. We do not need to muddy the waters with that.

Again, please look at some of the great advice that has been offer to you already.

Best, Zimichael

With all due respect I think you're being too hard on Danny Boy.
Nobody here had any serious side-effects taking this drug, as far as I know.
Take for example the drug Tegretol, it has a really nasty side effect profile, one has to be monitored with white blood cell count, bone marrow cancer, etc. Still, I was able to get a prescription for Tegretol from a walk-in clinic from a doctor I've never seen before. What does that tell you?
I don't think we had a person with fresh tinnitus try Trobalt and since Trobalt prevents tinnitus in animal models, it might be more beneficial to take it sooner rather than later, as opposed to Aut63 which is more a chronic tinnitus hope. I understand it didn't work for you and you might be very disappointed, but my friend Christian is having very good results with it I can tell you. He went from literally suicidal to happy in a matter of a few days on the drug.
I know Craig tried to get this drug but no doctor would prescribe it to him in his home state -who knows it might of saved his life.

 

[Danny Boy]

With all due respect I think you're being too hard on Danny Boy.
Nobody here had any serious side-effects taking this drug, as far as I know.
Take for example the drug Tegretol, it has a really nasty side effect profile, one has to be monitored with white blood cell count, bone marrow cancer, etc. Still, I was able to get a prescription for Tegretol from a walk-in clinic from a doctor I've never seen before. What does that tell you?
I don't think we had a person with fresh tinnitus try Trobalt and since Trobalt prevents tinnitus in animal models, it might be more beneficial to take it sooner rather than later, as opposed to Aut63 which is more a chronic tinnitus hope. I understand it didn't work for you and you might be very disappointed, but my friend Christian is having very good results with it I can tell you. He went from literally suicidal to happy in a matter of a few days on the drug.
I know Craig tried to get this drug but no doctor would prescribe it to him in his home state -who knows it might of saved his life.

I am trying to obtain a prescription but it seems impossible. I think the doctors don't care if I live or die. I tried to show her the evidence and she was not having any of it, she just kept saying we'll ask the ENT department for advice. I asked how long this would take, she should weeks, maybe months. And I'm not sure if the ENT department really have a clue about trobalt. It seems that I can't get any help, even though I told her I tried to hang myself and drown myself in the bath. The early intervention team rang me and asked how I felt, I said really, really depressed and all they said was, we'll leave you in the hands of your social worker. Seriously, why is this so difficult?

 

[65vwbus]

Thank you very much @65vwbus, I'll push for a referral - did you say anything particular to get to see a specialist like that? Sorry hear about the side-effect There's a running theme of of how determined people are to get the T resolved that they are exploring the boundaries of existing medicine.

Has anything worked well for you recently?

Hey @tomm I'm a bit different because my tinnitus started at the same time as chronic nerve pain in my face and teeth. My GP said she hates epilepsy drugs! I'll send you a private message because I don't want to take the thread off topic.

 

[lapidus]

but my friend Christian is having very good results with it I can tell you.

Are you talking about Christian here on this board or a another Christian?

 

[Mpt]

Hi all... sorry it has been awhile since posting, it was my own fault for constantly ingnoring the boards netiquette rules.... in regards to my current tinnitus after tapering down, I never hear my tinnitus anymore ever under any normal circumstances. It's literally just when plugging my ears to consciously look for it and even then I would say that I don't hear it probably half of the time, and when I do it's extremely faint even with ears plugged. Basically I could have had this level of tinnitus my whole life and I never would have known about it... other than not going to concerts it has no other impact on my life at all anymore.

Obviously I do think the potassium channel thesis holds a lot of promise, and after years of being under-served by the ATA giving 100K grants to Dr Tyler for music therapy, etc , etc (and its a sad, long list)... there are finally real scientists looking into the cause of tinnitus in the auditory cortex, and they aren't getting grants, they work for pharmaceutical companies with a profit motive and I really do believe that its just a matter of time before everyone with tinnitus has the sort of experience that I have had...

I truly consider myself one of the luckiest people on the planet...my whole world, my reality seems like such a more beautiful place than it ever did before I went through the immense suffering that I did... I plan to visit the board occasionally to check up on the retigabine thread, maybe once a month or so- but not too often as I do lose my temper with certain factions on here pretty easily, and its just not productive and I no longer need the support that this site provided in spades during my darkest days... wishing you all the best of luck and silence eventually

and to Markku, Jazz, Steve and the rest of the staff.... thanks so much for this place on the internet- Markku-- my wife is of Finnish descent, and I've already told her that if we ever travel there, even if its 40 years from now, that there is a man there who I need to find and whose hand I need to shake

 

[SoulStation]

Hi all... sorry it has been awhile since posting, it was my own fault for constantly ingnoring the boards netiquette rules.... in regards to my current tinnitus after tapering down, I never hear my tinnitus anymore ever under any normal circumstances. It's literally just when plugging my ears to consciously look for it and even then I would say that I don't hear it probably half of the time, and when I do it's extremely faint even with ears plugged. Basically I could have had this level of tinnitus my whole life and I never would have known about it... other than not going to concerts it has no other impact on my life at all anymore.

Obviously I do think the potassium channel thesis holds a lot of promise, and after years of being under-served by the ATA giving 100K grants to Dr Tyler for music therapy, etc , etc (and its a sad, long list)... there are finally real scientists looking into the cause of tinnitus in the auditory cortex, and they aren't getting grants, they work for pharmaceutical companies with a profit motive and I really do believe that its just a matter of time before everyone with tinnitus has the sort of experience that I have had...

I truly consider myself one of the luckiest people on the planet...my whole world, my reality seems like such a more beautiful place than it ever did before I went through the immense suffering that I did... I plan to visit the board occasionally to check up on the retigabine thread, maybe once a month or so- but not too often as I do lose my temper with certain factions on here pretty easily, and its just not productive and I no longer need the support that this site provided in spades during my darkest days... wishing you all the best of luck and silence eventually

and to Markku, Jazz, Steve and the rest of the staff.... thanks so much for this place on the internet- Markku-- my wife is of Finnish descent, and I've already told her that if we ever travel there, even if its 40 years from now, that there is a man there who I need to find and whose hand I need to shake

GREAT LUCK.
ARE YOU STILL ON A DOSE OR ARE YOU OFF?

 

[Mpt]

GREAT LUCK.
ARE YOU STILL ON A DOSE OR ARE YOU OFF?

i'm competely off and have been for several weeks

 

[SoulStation]

thats fantastic. congrats Matt. thank you.

 

[SoulStation]

With all due respect I think you're being too hard on Danny Boy.
Nobody here had any serious side-effects taking this drug, as far as I know.
Take for example the drug Tegretol, it has a really nasty side effect profile, one has to be monitored with white blood cell count, bone marrow cancer, etc. Still, I was able to get a prescription for Tegretol from a walk-in clinic from a doctor I've never seen before. What does that tell you?
I don't think we had a person with fresh tinnitus try Trobalt and since Trobalt prevents tinnitus in animal models, it might be more beneficial to take it sooner rather than later, as opposed to Aut63 which is more a chronic tinnitus hope. I understand it didn't work for you and you might be very disappointed, but my friend Christian is having very good results with it I can tell you. He went from literally suicidal to happy in a matter of a few days on the drug.
I know Craig tried to get this drug but no doctor would prescribe it to him in his home state -who knows it might of saved his life.

Dan we did @Hengist had only had his for less then two months. He had a bad reaction.

 

[Danny Boy]

i'm competely off and have been for several weeks

So trobalt has lowered the volume of your tinnitus permanently!?

 

[RichL]

Hi all... sorry it has been awhile since posting, it was my own fault for constantly ingnoring the boards netiquette rules.... in regards to my current tinnitus after tapering down, I never hear my tinnitus anymore ever under any normal circumstances. It's literally just when plugging my ears to consciously look for it and even then I would say that I don't hear it probably half of the time, and when I do it's extremely faint even with ears plugged. Basically I could have had this level of tinnitus my whole life and I never would have known about it... other than not going to concerts it has no other impact on my life at all anymore.

Obviously I do think the potassium channel thesis holds a lot of promise, and after years of being under-served by the ATA giving 100K grants to Dr Tyler for music therapy, etc , etc (and its a sad, long list)... there are finally real scientists looking into the cause of tinnitus in the auditory cortex, and they aren't getting grants, they work for pharmaceutical companies with a profit motive and I really do believe that its just a matter of time before everyone with tinnitus has the sort of experience that I have had...

I truly consider myself one of the luckiest people on the planet...my whole world, my reality seems like such a more beautiful place than it ever did before I went through the immense suffering that I did... I plan to visit the board occasionally to check up on the retigabine thread, maybe once a month or so- but not too often as I do lose my temper with certain factions on here pretty easily, and its just not productive and I no longer need the support that this site provided in spades during my darkest days... wishing you all the best of luck and silence eventually

and to Markku, Jazz, Steve and the rest of the staff.... thanks so much for this place on the internet- Markku-- my wife is of Finnish descent, and I've already told her that if we ever travel there, even if its 40 years from now, that there is a man there who I need to find and whose hand I need to shake

That's awesome news Mat, I hope it stays away for good bro, this news has made my mind up on going all out in trying to obtain this drug.
Will look out for your monthly post's.

Take care Rich

 

[SoulStation]

@Mpt just Amazing!
Would you mind shearing the following with us?
For how long time were you on Retigabing?
What was the maximum dose?
How did you did you ramp up?
How did you tapper?
How many days until you realized that it was really working?
Any ideas way you responded so good to this?

It is just so inspiering to finally read about a medical treatment with succes!

He already shared all this info in the thread. Look under his profile for postings.

 

[dan]

@SoulStation , yes Hengist did have a bad reaction, but if I recall correctly he mentioned he has bad reactions to almost every drug he took.

 

[David S]

Sorry for asking questions without reading through. Guess i just got a little thrilled.

Retigabine was not really an option for me because i could not see myself taking a strong drug for the rest of my life.

@Mpt curing himself within a few weeks and then stop taking it after a 4-5 month without getting T back puts this in a new daylight.

The risk of trying this a few weeks must be minimal.

 

[SoulStation]

@SoulStation , yes Hengist did have a bad reaction, but if I recall correctly he mentioned he has bad reactions to almost every drug he took.

True. Believe you me, if we had another member have complete cessation of the T I think it would be spectacular. I'm all for anyone being able to get Retigabine if they are suffering and want to try. I am one of those people and am grateful that my doctor let me give it a try and even though he is not letting me raise my dose I feel the fact that I am already on the med and tolerating it will help at least a little bit with finding a specialist who will could potentially manage a treatment plan with me to raise the dosage.

 

[Juan Carlos]

Mtp you made our day, im so happy to read that and u are considered as a hero as you were the first to test the drug. Permanent cure after tape off is just amazing.
So most of other testers had to stop because of supply problems i am right?
@mtp or anyone else knows if he had hyperacusia and in that case was it cured too?
Here in spain i bought some times prescription drugs like campral or some others without prescription, im thinking to go for retigabine, i think it might be posible to buy just like that
For the ones who tested, are able to have normal life? Are the speaking problems noticeable? Walking or balance is a hard thing? Will i be able to ride a bike to my job? Or should i go walking? How about driving a car?
My biggest concern is to make mistakes or forget things in my job as i am a programmer, will i be in a big problem? I will tell that to my boss in case so he is warned. Hope to get this answers before i decide

 

[attheedgeofscience]

I asked how long this would take, she should weeks, maybe months.

That's probably because she is asking the ENT department for advice; epilepsy medication is prescribed by neurologists - alternatively, it may be precribed by a GP. So if she insists on asking the wrong people then - yes - it will take some time, I am sure...

I don't join this board as much as I used to, but I seem to recall from some previous post that you had gotten on to the AM101 trial. I would exhaust all options before moving onto the off-label stuff. Being on epilepsy medication is no picnic. Any clinical trial would also insist on candidates being "clean". A certain washout period is normally required.

If you really want to pursue the Trobalt option, then see a neurologist at your own expense - rather than waiting for a referral. Bring documentation along (several members on this board can help you with that). My suggestion.

 

[rtwombly]

Wow, what a day! Danny Boy, Dr Nagler summed up the strategy to approach your GP, but I wonder if you're just going to the wrong doctor, period. Do you have any options to go to somebody else, or maybe straight to a neurologist?

@Mpt, thanks for getting back to us. It sounds like there's a clear message to take to the doctor now. Retigabine can lead to a full remission, and you don't need to be on it for life. Granted we don't have nearly enough cases to say it'll work for everyone, but for anyone who can tolerate the side effects well enough to get to a therapeutic dose, it holds real potential as a cure.

Folks, anybody who goes to a doctor for a prescription should be sure to include the idea that treatment can be restricted to a term of months, not years. The worst of the side effects have been seen with long term use. Mpt's experience of getting on and then off the drug successfully shows that long term is not how we should be thinking about this treatment.

I'm excited! Next week I'm going to call my Health Insurance provider and schedule a meeting with my doctor. He won't be the one to get me on Retigabine, but I want to give him a chance to try any other therapies so that I can tell my neurologist I've truly done everything I could.

 

[valeri]

This is a great news but I'm just wondering if mpt's tinnitus would have gone away without retigabine?

 

[valeri]

@attheedgeofscience

Good to have you back

 

[RichL]

@attheedgeofscience

Good to have you back

Second that!

 

[Danny Boy]

Does anyone know where I can import this stuff without a prescription?

 

[Danny Boy]

Wow, what a day! Danny Boy, Dr Nagler summed up the strategy to approach your GP, but I wonder if you're just going to the wrong doctor, period. Do you have any options to go to somebody else, or maybe straight to a neurologist?

@Mpt, thanks for getting back to us. It sounds like there's a clear message to take to the doctor now. Retigabine can lead to a full remission, and you don't need to be on it for life. Granted we don't have nearly enough cases to say it'll work for everyone, but for anyone who can tolerate the side effects well enough to get to a therapeutic dose, it holds real potential as a cure.

Folks, anybody who goes to a doctor for a prescription should be sure to include the idea that treatment can be restricted to a term of months, not years. The worst of the side effects have been seen with long term use. Mpt's experience of getting on and then off the drug successfully shows that long term is not how we should be thinking about this treatment.

I'm excited! Next week I'm going to call my Health Insurance provider and schedule a meeting with my doctor. He won't be the one to get me on Retigabine, but I want to give him a chance to try any other therapies so that I can tell my neurologist I've truly done everything I could.

I will try again, if they still won't I'm gonna import the stuff. It's sad, that even though I suffer and there is something which may help me, they just won't budge. And this shows that tinnitus is reversible! Amazing how an epileptic drug has managed to do this, whereas there is nothing for tinnitus...Goes to show how underfunded tinnitus research is!

 

[dan]

I think you still need a prescription to import it, unless you're buying it on the black market.

 

[Danny Boy]

I think you still need a prescription to import it, unless you're buying it on the black market.

"It is illegal to buy prescription-only drugs without a prescription or consultation in the UK, whether on or offline.

This law currently does not apply to websites based abroad as long as you're buying for personal use."

So all I need to do is find a website.