Retigabine (Trobalt, Potiga) — General Discussion

[Telis]

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.

True...good points. But no, I can't live it at this point. Just not sure if retigabine is my best option (not to that say that it isn't).

To be honest I'm a little nervous to take any drug, especially now with tinnitus.

 

[SoulStation]

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.

Depakote is no joke. I have had numerous friends on it for bipolar depression. Pretty powerful awful potential side effects.

 

[dan]

Depakote is no joke. I have had numerous friends on it for bipolar depression. Pretty powerful awful potential side effects.

Yep, and a doctor will have no problem prescribing it off label. So what gives?
Actually, I think the part where you say - I'm gonna kill myself - classifies you a psychotic. So their asses are covered.

 

[theekarwash]

True...good points. But no, I can't live it at this point. Just not sure if retigabine is my best option (not to that say that it isn't).

To be honest I'm a little nervous to take any drug, especially now with tinnitus.

Hey Telis. I think considering the amount of people that have taken it with 0 negative side effects (except for maybe the mild amnesia and urinary retention), I think that it's worth your time trying it, even for a few months just to see how you react to it. I know you've been suffering with your T for a good while now, and I think that you'd be a prime candidate for taking retigabine as your T is severely bothersome.

I tried to get retigabine and my doctor said he doesn't think it'll help and he gave me serc instead. I tried the serc for a few weeks and it didn't help so I'm going to go back and try again.

 

[Telis]

Hey Telis. I think considering the amount of people that have taken it with 0 negative side effects (except for maybe the mild amnesia and urinary retention), I think that it's worth your time trying it, even for a few months just to see how you react to it. I know you've been suffering with your T for a good while now, and I think that you'd be a prime candidate for taking retigabine as your T is severely bothersome.

I tried to get retigabine and my doctor said he doesn't think it'll help and he gave me serc instead. I tried the serc for a few weeks and it didn't help so I'm going to go back and try again.

Hey thekarwash,

I know at one point @Zimichael had a temporary worsening of his H. This scares the shit out of me as I have pretty bad H along side my T. Also, there were a couple of members that had a temporary worsening of their T as well (can't remember which this second). As far the other side effects, they don't make me as nervous.

I would like to give this a shot but I couldn't take a worsening of my situation in regards to my T and H. I'm very concerned with taking any type of drug as this is the main reason I have currently have T. Soo...not sure how to proceed...on one hand I'm at the end of my rope with suffering, on the other hand I have a real fear of taking another potentially dangerous drug. This drug hasn't been around for very long, and there have only been a hand full of people here try it for T.... Very unknown in the big picture IMO.

I have been tossing around the idea of taking this drug for a couple of months now, risk vs reward I guess...I was just hoping for better results from some of the members making the reward out weigh what I consider some risk.

Telis

 

[Danny Boy]

Hey thekarwash,

I know at one point @Zimichael had a temporary worsening of his H. This scares the shit out of me as I have pretty bad H along side my T. Also, there were a couple of members that had a temporary worsening of their T as well (can't remember which this second). As far the other side effects, they don't make me as nervous.

I would like to give this a shot but I couldn't take a worsening of my situation in regards to my T and H. I'm very concerned with taking any type of drug as this is the main reason I have currently have T. Soo...not sure how to proceed...on one hand I'm at the end of my rope with suffering, on the other hand I have a real fear of taking another potentially dangerous drug. This drug hasn't been around for very long, and there have only been a hand full of people here try it for T.... Very unknown in the big picture IMO.

I have been tossing around the idea of taking this drug for a couple of months now, risk vs reward I guess...I was just hoping for better results from some of the members making the reward out weigh what I consider some risk.

Telis

This drug isn't a benzo and won't cause your tinnitus to worsen. This could very well be a cure or even a volume reducer. Trust me, I'm going to import this from merrychemical as soon as they respond to me. I honestly hope it works, as I'm part of the AM-101 trials and if that doesn't help then trobalt is all I can look forward to. After that, it's Autifony...If none of that works, I'm not gonna be around for long, as I can't handle this suffering. It's a real shame that tinnitus isn't taken seriously at all, considering how destructive it can be and how many life's it takes...Guess the world is quite uncaring to us...

 

[Telis]

This drug isn't a benzo and won't cause your tinnitus to worsen. This could very well be a cure or even a volume reducer. Trust me, I'm going to import this from merrychemical as soon as they respond to me. I honestly hope it works, as I'm part of the AM-101 trials and if that doesn't help then trobalt is all I can look forward to. After that, it's Autifony...If none of that works, I'm not gonna be around for long, as I can't handle this suffering. It's a real shame that tinnitus isn't taken seriously at all, considering how destructive it can be and how many life's it takes...Guess the world is quite uncaring to us...

Hey Danny boy,

There are a ton of non benzo drugs that can cause or worsen tinnitus.

 

[Danny Boy]

Hey Danny boy,

There are a ton of non benzo drugs that can cause or worsen tinnitus.

That's temporary though. Caffeine can worsen some peoples tinnitus, especially mine, but it's wears off. The thing is, if your tinnitus is really bad and may lead you to commit suicide then trying trobalt is your best option.

 

[Telis]

That's temporary though. Caffeine can worsen some peoples tinnitus, especially mine, but it's wears off. The thing is, if your tinnitus is really bad and may lead you to commit suicide then trying trobalt is your best option.

Maybe it is (from your point of view) but I haven't come to that conclusion yet.

 

[Danny Boy]

Maybe it is (from your point of view) but I haven't come to that conclusion yet.

No worries. Well, when I get it and try it, I'll keep you and everyone updated. Just remember trying to get it takes awhile...

 

[Telis]

No worries. Well, when I get it and try it, I'll keep you and everyone updated. Just remember trying to get it takes awhile...

I wish you a lot of luck...we all need some damn relief here. And thx in advance for keeping us updated.

Telis

 

[Danny Boy]

Has anyone managed to buy off of merrychemical? I've been waiting 2 days for a response.

 

[MattK]

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.

Telis, I'm pretty happy to hear this because that sounds like you're making progress with your T. I remember a couple of weeks ago, you'd do anything to get relief.

And I'm like you, I need more info before I try it. I'm not the type who likes taking drugs unless absolutely necessary.

I did bring up retigabine to my doctor and he didn't even know what it was... I have a lot of faith in him.

 

[Zimichael]

This drug isn't a benzo and won't cause your tinnitus to worsen.

@Danny Boy ... With all due respect I think you need to get your facts straight, as things are getting a bit "frothy" here.

First up with Benzos. They do not cause tinnitus to worsen except perhaps in exceptional cases (that I have never come across) unless stopped suddenly or tapered off too fast. That seems to be where the trouble lies. Even then, many people (myself included, and at numerous times) have dumped Benzos cold turkey with no increase in T. Not advisable after long term use, but I would say not a rare practice either.
I would also say, that Benzos may be one of the most common meds prescribed for tinnitus and the anxiety that goes along with it, especially at the beginning. I am not going to quote numbers, but of all the people who have posted their meds on this forum, or discussed meds, or have been suffering from anxiety, I can hardly remember any without a Benzo in the mix. My sense is, they are front-line defense at getting us through the roughest parts. Personally, I could not have made it without them and I suspect thousands upon thousands of others on, and now off TT, are the same...Just my 'educated' opinion.

OK, but do know that taking Benzos with Retigabine is an "up for grabs" question base on potential effects on plasticity. My own conclusion, based on extensive review, is that it could be good and it could be bad. The "science" initially implied it could be a problem, but the facts on the ground after some years of patient review (epilepsy patients) was that it was a puzzling "non issue". However, if not on a Benzo and about to take Retigabine, I would stay off it just to keep the waters clear....If not on Retigabine, I would say you may well benefit greatly from a Benzo, taken sensibly. Just my opinion.

I also think if you had been around and followed every step of the way from the beginning on this thread, that you may not be quite so definitive about "results" and actions.
I wonder, have you read the posts put on near the beginning of all the warnings and "black box" quality of this drug?
This c/o jazz is not a bad one to be aware of: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf

I think new people joining this thread should be aware of these cautions and not just see the latest posts to make decisions off of...Most of us who have been on the thread for a while thrashed all those around and came to our own conclusions so do not bring them up any more, but new 'followers' might be advised to review those earlier posts.

@Telis ....yeah Telis, you are aware of what I am saying I believe, and that, what is it? seven, or eight people who have guinea pigged this drug is not much of N sample! Hell if we go off eight people then 25% of us did not have a positive reaction to Retigabine! I do not really want to classify my reaction as "bad", but a 50% increase in Hyperacusis is not exactly good is it?! Plus @Danny Boy you are incorrect to say that "this will not increase your T"...it sure did for Hengist and it also did somewhat for me. I would say it increased my T by 10% and certainly made it more reactive, but I perhaps 'kindly' put that down to "wash-over" effect from increased Hyperacusis. Objectively I should have just said it increased my tinnitus right?!
@Telis just a tip on the H...Yeah it could be a factor, but remember that I think it could be do-able if you keep out of sound exposure. The H reacts to sound, so if you eliminate sound you may be OK. It is was not pleasant for me as indeed the "ear bruising" is scary as hell after what I have been through. However, it did dissipate after drug cessation so if it even happens for you, you could just dump the drug. *[See below re speed of taper].

I am belabouring all this above because I have a vested interest in keeping our reporting on Retigabine as accurate and clear as possible. I truly believe in these Kv Channels as being a ticket out of for lots of T, but am also aware that these are early days until AUT00063 comes out. Our "supporting evidence" on Retigabine as an alternative for a Kv7 approach, should be as accurate as possible to allow potential researchers, and us, to make best use of what our trialees are accumulating through group experience.

As an end note, just in case anyone thinks that because the Trobalt did not work for me that I am now down on the drug. If you do think that you are flat out wrong.
a). I know I am a special case. I mean, how many people have had the same single tone of T for 58 years here? How many people have had three additional permanent increases in volume on their T? That is hard core, freeway deep grooves in the "T brain" there! Very tough shit to deal with for any remediation I would say.
b). I have actually become more impressed with Retigabine as a potential T drug since I stopped! Yes truly. The latest research that Locoyeti found is amazing and very supportive of some of the key aspects we had been debating for months about Retig. I think the Kv7's have a darn good chance of getting fine tuned to help T almost as much as Kv3 apparently does with Autifony. No doubt I may be proven wrong there as Charles Large sure knows all about the Kv7's and zeroed in on Kv3, but still...for us, Retigabine is the only option right now in this category, and I think it has excellent street cred...Just don't go into it blind!

Best of luck to all, I am still very much following all of this and looking at Retigabine research. If I do take it again I will be tapering up at a much faster rate and bigger dose jumps. I have a sense that the speed of increase and decrease may not be as worrisome as we thought IF YOU HAVE NO LATENT EPILEPTIC TENDENCIES!!!...and maybe you would just not know that right?! @locoyeti may help us answer this particular question a bit more. Until we know more, caution is always warranted.

Zimichael

 

[Danny Boy]

@Danny Boy ... With all due respect I think you need to get your facts straight, as things are getting a bit "frothy" here.

First up with Benzos. They do not cause tinnitus to worsen except perhaps in exceptional cases (that I have never come across) unless stopped suddenly or tapered off too fast. That seems to be where the trouble lies. Even then, many people (myself included, and at numerous times) have dumped Benzos cold turkey with no increase in T. Not advisable after long term use, but I would say not a rare practice either.
I would also say, that Benzos may be one of the most common meds prescribed for tinnitus and the anxiety that goes along with it, especially at the beginning. I am not going to quote numbers, but of all the people who have posted their meds on this forum, or discussed meds, or have been suffering from anxiety, I can hardly remember any without a Benzo in the mix. My sense is, they are front-line defense at getting us through the roughest parts. Personally, I could not have made it without them and I suspect thousands upon thousands of others on, and now off TT, are the same...Just my 'educated' opinion.

OK, but do know that taking Benzos with Retigabine is an "up for grabs" question base on potential effects on plasticity. My own conclusion, based on extensive review, is that it could be good and it could be bad. The "science" initially implied it could be a problem, but the facts on the ground after some years of patient review (epilepsy patients) was that it was a puzzling "non issue". However, if not on a Benzo and about to take Retigabine, I would stay off it just to keep the waters clear....If not on Retigabine, I would say you may well benefit greatly from a Benzo, taken sensibly. Just my opinion.

I also think if you had been around and followed every step of the way from the beginning on this thread, that you may not be quite so definitive about "results" and actions.
I wonder, have you read the posts put on near the beginning of all the warnings and "black box" quality of this drug?
This c/o jazz is not a bad one to be aware of: http://www.fda.gov/downloads/Drugs/DrugSafety/UCM259619.pdf

I think new people joining this thread should be aware of these cautions and not just see the latest posts to make decisions off of...Most of us who have been on the thread for a while thrashed all those around and came to our own conclusions so do not bring them up any more, but new 'followers' might be advised to review those earlier posts.

@Telis ....yeah Telis, you are aware of what I am saying I believe, and that, what is it? seven, or eight people who have guinea pigged this drug is not much of N sample! Hell if we go off eight people then 25% of us did not have a positive reaction to Retigabine! I do not really want to classify my reaction as "bad", but a 50% increase in Hyperacusis is not exactly good is it?! Plus @Danny Boy you are incorrect to say that "this will not increase your T"...it sure did for Hengist and it also did somewhat for me. I would say it increased my T by 10% and certainly made it more reactive, but I perhaps 'kindly' put that down to "wash-over" effect from increased Hyperacusis. Objectively I should have just said it increased my tinnitus right?!
@Telis just a tip on the H...Yeah it could be a factor, but remember that I think it could be do-able if you keep out of sound exposure. The H reacts to sound, so if you eliminate sound you may be OK. It is was not pleasant for me as indeed the "ear bruising" is scary as hell after what I have been through. However, it did dissipate after drug cessation so if it even happens for you, you could just dump the drug. *[See below re speed of taper].

I am belabouring all this above because I have a vested interest in keeping our reporting on Retigabine as accurate and clear as possible. I truly believe in these Kv Channels as being a ticket out of for lots of T, but am also aware that these are early days until AUT00063 comes out. Our "supporting evidence" on Retigabine as an alternative for a Kv7 approach, should be as accurate as possible to allow potential researchers, and us, to make best use of what our trialees are accumulating through group experience.

As an end note, just in case anyone thinks that because the Trobalt did not work for me that I am now down on the drug. If you do think that you are flat out wrong.
a). I know I am a special case. I mean, how many people have had the same single tone of T for 58 years here? How many people have had three additional permanent increases in volume on their T? That is hard core, freeway deep grooves in the "T brain" there! Very tough shit to deal with for any remediation I would say.
b). I have actually become more impressed with Retigabine as a potential T drug since I stopped! Yes truly. The latest research that Locoyeti found is amazing and very supportive of some of the key aspects we had been debating for months about Retig. I think the Kv7's have a darn good chance of getting fine tuned to help T almost as much as Kv3 apparently does with Autifony. No doubt I may be proven wrong there as Charles Large sure knows all about the Kv7's and zeroed in on Kv3, but still...for us, Retigabine is the only option right now in this category, and I think it has excellent street cred...Just don't go into it blind!

Best of luck to all, I am still very much following all of this and looking at Retigabine research. If I do take it again I will be tapering up at a much faster rate and bigger dose jumps. I have a sense that the speed of increase and decrease may not be as worrisome as we thought IF YOU HAVE NO LATENT EPILEPTIC TENDENCIES!!!...and maybe you would just not know that right?! @locoyeti may help us answer this particular question a bit more. Until we know more, caution is always warranted.

Zimichael

I totally understand. You say it didn't work for you right? Does that mean that trobalt doesn't work if you've had tinnitus for a certain amount of time? Autifony is 6-18 months, so what if it only works between those times? We just don't know. I for one, want to try trobalt as soon as possible, as I've only had this for 3 months, so maybe, just maybe, if I get trobalt as soon as possible it will help. If it doesn't help, then it doesn't. It's a risk, I know. But it's worth trying.

 

[dan]

I totally understand. You say it didn't work for you right? Does that mean that trobalt doesn't work if you've had tinnitus for a certain amount of time? Autifony is 6-18 months, so what if it only works between those times? We just don't know. I for one, want to try trobalt as soon as possible, as I've only had this for 3 months, so maybe, just maybe, if I get trobalt as soon as possible it will help. If it doesn't help, then it doesn't. It's a risk, I know. But it's worth trying.

Danny Boy, I'm behind you 100% but I don't think getting it from Merrychemical is a good idea. China is notorious for lack of quality control. You don't know what's in that powder, it might be only 50% drug and the other 50% Melamine. You should fly with me to D.R. and get the real drug in a blister pack that says GSK Retigabine on it (or another country that we confirm) by the way I'm also Danny boy, just Sr.

 

[Danny Boy]

Danny Boy, I'm behind you 100% but I don't think getting it from Merrychemical is a good idea. China is notorious for lack of quality control. You don't know what's in that powder, it might be only 50% drug and the other 50% Melamine. You should fly with me to D.R. and get the real drug in a blister pack that says GSK Retigabine on it (or another country that we confirm) by the way I'm also Danny boy, just Sr.

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Sounds like a plan. Where do we fly to?

 

[dan]

When @benryu was here, he confirmed for me that Retigabine is available in the Dominican Republic (his mother lives there), unfortunately benryu hasn't been back, I want to confirm as much info as possible - which pharmacy, prescription(?), need to pre-order(?) etc.
There is also the option to get it via the Canadian online pharmacy as a last resort, we would need to fly to USA, see a doctor get the Rx and fax it to Canada so they will send it to our hotel.
Then we can get high on pure retigabine in the bathroom.

 

[Danny Boy]

When @benryu was here, he confirmed for me that Retigabine is available in the Dominican Republic (his mother lives there), unfortunately benryu hasn't been back, I want to confirm as much info as possible - which pharmacy, prescription(?), need to pre-order(?) etc.
There is also the option to get it via the Canadian online pharmacy as a last resort, we would need to fly to USA, see a doctor get the Rx and fax it to Canada so they will send it to our hotel.
Then we can get high on pure retigabine in the bathroom.

Haha...We sure could! I'm game!

 

[Telis]

When @benryu was here, he confirmed for me that Retigabine is available in the Dominican Republic (his mother lives there), unfortunately benryu hasn't been back, I want to confirm as much info as possible - which pharmacy, prescription(?), need to pre-order(?) etc.
There is also the option to get it via the Canadian online pharmacy as a last resort, we would need to fly to USA, see a doctor get the Rx and fax it to Canada so they will send it to our hotel.
Then we can get high on pure retigabine in the bathroom.

Can't you see a doctor in Canada, get the prescription done, order it online, have it shipped to the US and pick it up when arrives?

 

[dan]

@Telis, your doctor might have a US prescription license. My doctor is away right now, but Object16 (who is a Canadian MD) told me that a Canadian doctor can only prescribe for a drug that is available in Canada.

 

[undecided]

I believe Trobalt is actually available in Italy. That is, no actual prescription required, for the Trobalt starter pack.
I'm not Italian, but @Viking can confirm this.

I wish it was available here in Greece. You don't need a prescription for anything, just walk into a pharmacy and buy whatever you want (except hardcore benzos).

 

[dan]

@Viking - confirmation please ?

 

[amandine]

@Danny Boy
I am in France (from England) and you are in London. We could get it Retigabene therefore from Italy but can we bring it in on the plane or do we need to drive there and bring it back in the car? Are you interested in doing that?
Italy is a lot closer for us to get the retigabene. Do you know how much it may cost in Italy or can you find out please any way?
Off topic but still on topic......
I would like to do the am-101 trials but that would be so much more possible if I was in London or the UK - much more efficient than in France (where I live) where I have been left to dangle and deal with it on my own. I cannot do it in the UK as I dont have anywhere to stay in the UK. Otherwise I just need to register with a GP (not a problem) to be able to do it in the UK. The trials is on off visits for the first 6 weeks, IE either one day visits or several days and then a break for a couple of weeks and then one day appointments for the rest of the time....then follow up visits to get the real deal meds following the first 90 days which are only for a few days each time I think (not sure if you have to keep the diary and visits going while doing the follow up real deal trials).
I cannot afford to pay for hotels etc...but maybe....there may be a solution out there for me?? This problem has come out of the blue and I am in a maze getting nowhere fast so any help is incredibly welcome.
any T sufferers out there in the UK or in France near to the study sites who can offer me somewhere to stay so I could get the injections. I know that I should not ever ask this but I am really quite desperate now...France is hopeless to get info from so the only way is just to book it (preferably in the organised and more efficient UK) but could also be at a french study site. So at this stage I am desperate and would do anything? but cannot afford a hotel for these visits on top of the back forth travel expenses and wont rob a bank or a granny to get the money....(just referring to Dr Nagler suggesting that we beg borrow or steal the money to visit a recommended TRT practioner). If I was to steal the money I would end up in prison and I doubt that they have such TRT practioners there. I have no one that I can ask to beg or borrow the money.....but sure would like to do something to help get rid of this debilatating problem which is currently destroying me and my life and my life energy. I know this is off topic - sorry.....forgive please.....

 

[Markku]

any T sufferers out there in the UK or in France near to the study sites who can offer me somewhere to stay so I could get the injections. I know that I should not ever ask this but I am really quite desperate now...

I'd say this isn't that far fetched of a request.

If I lived there, I'd gladly offer you a place for the duration of the trial.

Maybe you should create a new thread in Support about this, asking if anybody would be willing to host you?

 

[Danny Boy]

@Danny Boy
I am in France (from England) and you are in London. We could get it Retigabene therefore from Italy but can we bring it in on the plane or do we need to drive there and bring it back in the car? Are you interested in doing that?
Italy is a lot closer for us to get the retigabene. Do you know how much it may cost in Italy or can you find out please any way?
Off topic but still on topic......
I would like to do the am-101 trials but that would be so much more possible if I was in London or the UK - much more efficient than in France (where I live) where I have been left to dangle and deal with it on my own. I cannot do it in the UK as I dont have anywhere to stay in the UK. Otherwise I just need to register with a GP (not a problem) to be able to do it in the UK. The trials is on off visits for the first 6 weeks, IE either one day visits or several days and then a break for a couple of weeks and then one day appointments for the rest of the time....then follow up visits to get the real deal meds following the first 90 days which are only for a few days each time I think (not sure if you have to keep the diary and visits going while doing the follow up real deal trials).
I cannot afford to pay for hotels etc...but maybe....there may be a solution out there for me?? This problem has come out of the blue and I am in a maze getting nowhere fast so any help is incredibly welcome.
any T sufferers out there in the UK or in France near to the study sites who can offer me somewhere to stay so I could get the injections. I know that I should not ever ask this but I am really quite desperate now...France is hopeless to get info from so the only way is just to book it (preferably in the organised and more efficient UK) but could also be at a french study site. So at this stage I am desperate and would do anything? but cannot afford a hotel for these visits on top of the back forth travel expenses and wont rob a bank or a granny to get the money....(just referring to Dr Nagler suggesting that we beg borrow or steal the money to visit a recommended TRT practioner). If I was to steal the money I would end up in prison and I doubt that they have such TRT practioners there. I have no one that I can ask to beg or borrow the money.....but sure would like to do something to help get rid of this debilatating problem which is currently destroying me and my life and my life energy. I know this is off topic - sorry.....forgive please.....

I don't mind doing that, however, I don't live in London...I live in Bristol.

 

[amandine]

@Markku
Thanks for such a positive response to my post.
I was sure that I would have been told off for asking this so was rather afraid to post such a request. Thought it may possibly result in my being banned or something from the forum. Cos we are all supposed to be in charge of ourselves and independant and not really need help apart from the support in writing that we get. As much as the writing support is great and helps, I find myself in a position where I need practical physical help hence my post.
Yes OK I shall put it in support and see what happens. Just seems like begging to me and I am not a beggar.....but this has happened to me and I really need to try and do something or disappear into a black hole that I may never climb out from again.
Thanks for being so good about it.
Actually occurs to me:
There may be trials going on in USA or UK or EU or India or china or any other country in the world. Many of us cannot get to the trials due to location. Of course issues like being able to take part even if not resident would have to be resolved. So an EU member can take part in any of the countries in the EU. Maybe we could set up a database - people who would be willing to host another person to do a trial in their particular city for example and then maybe the recipient can offer that host a place to stay free accomodation for holiday in return or of course accomodation for a trial taking place...

 

[Viking]

I believe Trobalt is actually available in Italy. That is, no actual prescription required, for the Trobalt starter pack.
I'm not Italian, but @Viking can confirm this.

I wish it was available here in Greece. You don't need a prescription for anything, just walk into a pharmacy and buy whatever you want (except hardcore benzos).

Confirmed. you can easily buy without prescription.
I would like to share with you my experience even if I do not know what will be useful. I used the Trobalt with some success but I had to abandon because of excessive side effects. I found these days the "why" the drug Cinazyn (Stugeron) and Arlevertan (cinnarizine + dimenidrate) had helped me a lot: there are studies that confirm that both drugs act on potassium channels !!! This is very important for me because it is the same principle of action of Trobalt but without all the dangerous side effects.
These drugs are readily available. Here you will find a number of studies:
http://en.wikipedia.org/wiki/Cinnarizine ...."However, more recent evidence supports the idea that at pharmacologically relevant levels (0.3µM–0.5µM), cinnarizine is not lessening vestibular vertigo by blocking calcium channels, but rather by inhibiting potassium (K+) currents that are activated by heightened hydrostatic pressure on the hair cells...."

http://link.springer.com/article/10.1007/s00210-005-1077-z#page-1
http://www.ane.pl/pdf/7343.pdf
http://www.tinnitusjournal.com/detalhe_artigo.asp?id=261

hoping to be helpful

Best wishes

 

[dan]

@Viking , ok please can you write -
1.Name of pharmacy and location.
2.Dosages available
3.Prices
4.Host me?

Grazie!

We should start a Youtube channel/Reality show - Retigabine Hunter.

 

[amandine]

@DannyBoy
Thanks for your reply Danny.
Bristol to Dorchester (where they are holding trials) is approx 65 miles apart. Only one hour and a half driving each way (or more in rush hour of course).
Could also get public transport.
Or drive to UK with my old french car which is fully insured and legal for me to bring and drive in the uk so would have a car with assistance if I broke down whllst in the UK.
Trials are currently being carried out in Dorchester.
65 miles is loads closer than my nearest centre which is over 300 kms each way from me.....hell i can drive 3 hours per day....tiring yes but not impossible...
and / or maybe can claim travelling expenses and hotel costs to stay in dorchester for the few days that need to be there for the initial injections. Otherwise it is only one day appointments as far as I know. Someone in the UK told me that in UK the travelling costs plus hotel (up to 60 GBP) are being reimbursed from the study clinic. On the AM website it says that reasonable travelling costs will be paid by AM. So the hospital pays out and then reclaims from AM or the hospital have been pre allocated money to cover these costs. Have to hang on to and hand in to the hospital all receipts to make the claim.
All I would need to do is register with a local GP which I cant see as being a problem. The doc doesnt need to know that I live in france. I just dont have a doctor cos never needed one for years is all I would need to say. Lots of people coming back to the UK have done this method of registering with a local gp without a problem. Would have to use the bristol address to register with a doctor but would only be very temporary just for the trials.

However even tho AMedical says this on their website (re expenses covered) I can not even speak to anyone here in france to see if I can get the travel incl hotel costs covered. One doctor who emailed me told me that in france it may be different to the other countries and he thinks that travel costs may possibly be covered but not hotel but he really isnt sure about it all. And he is running the study centre at Tours which is also 300kms from me. However this sort of difference between france and the rest of the EU and UK is common for france - one rule for all the EU and then another one for france....so the UK would be so much easier for me plus of course it would be in english and not in french...big difference...possible to do in french but of course prefer my mother tongue...

Danny please may I ask you where are you doing the am-101 trials ? as dorchester is your nearest I think?
thanks
amanda
ps retigabene in italy?