Retigabine (Trobalt, Potiga) — General Discussion

[Danny Boy]

So AUT00063 is aimed at totally curing tinnitus rather than volume reduction? I would love to sign up to it, but the trials were meant to be in September then they changed it to October and who know if it'll get delayed once again?

 

[SteveToHeal]

So it'll be in pill form?

Yes

Personally, these KV modulators may be the ticket to an actual cure...

I and everyone on here hopes that too.

 

[Juan Carlos]

So AUT00063 is aimed at totally curing tinnitus rather than volume reduction? I would love to sign up to it, but the trials were meant to be in September then they changed it to October and who know if it'll get delayed once again?

Yes, totally. Even with Retigabine some people got much better or totally cured, AUT should be better than Retigabine. Don't worry about posible delays, the important is that it keeps going forward. It's meant to start in October, but i guess not all members will start at the same time. Anyways try to sign up, there's nothing to lose, as u have this posibility as a UK citizen

 

[SteveToHeal]

So AUT00063 is aimed at totally curing tinnitus rather than volume reduction? I would love to sign up to it, but the trials were meant to be in September then they changed it to October and who know if it'll get delayed once again?

Some guys on the forum have had contact with Autifony CMO. He said the info re the trials (numbers to phone) will go live on the website in the next 4 - 6 weeks. That was a few weeks ago, so i'm expecting any time soon. Maybe late Oct/early Nov. Just keep checking the website. Other prob is the hearing loss eligibility criteria for entry onto the trial. But comment/report/view it on the AUT thread not this Retigabine one.

 

[Christian78]

I am with @rtwombly on this one, I don't think we are in any position to judge the effects of the drug until you have a sufficient dose for a sufficient amount of time. Given that @undecided is also not experiencing any side effects, he might need a higher dose. There seems to be different reactions to this drug, note how @Christian78 actually got worse for a while. If nothing happens at 900mg/day, then we can say something about it not working. So far the two people that have gone up to that dosage level have reported great results.

I know you are saying that you should at least feel 'something' at the lower dosages, but I just don't think we know enough to say that this will always be true for everyone. Perhaps there are fine distinctions in the various forms of T that people have (the stable T versus fluctuating T you were talking about) that react differently to this drug. I don't see why it would be the case that any amount of the drug must have some effect on T.

Also wanted to add that I think the Kv7.4 effect might be a key player in all of this. The effects on Kv7.4 require 3 to 4 times as much of the drug to affect it compared to the Kv7.2/3 channels (see the table in the post I had a few days back). Maybe for some people the Kv7.4 channel effect is necessary for change? This might be a possibility.

There is kv 3.1 and retigabine if 7.3, why do we keep mixing kv 3.1 and 7.3?

 

[rtwombly]

There is kv 3.1 and retigabine if 7.3, why do we keep mixing kv 3.1 and 7.3?

I don't understand why Kv7.2 and 7.3 have anything to do with it, but I'll take the doctor's word for it. From reading about how they excluded Kv7.1 from Retigabine, I think it would have to be two different drugs to target Kv3 and Kv7. Different chemicals interact with different channels. It'd be great if they could target ALL the significant channels without touching the others, but that seems a long ways off.

 

[locoyeti]

There is kv 3.1 and retigabine if 7.3, why do we keep mixing kv 3.1 and 7.3?

I don't understand, can you clarify what you mean?
I think an AUT00063 and retigabine combo might work..... might be dangerous.

 

[locoyeti]

@SoulStation @Christian78 @Johno
Can you describe what happens when the drug is not 'in your system'? Does it go back up to baseline, or are you experiencing some lasting improvement? There might be some effect of the drug in your system (I think it stays for 8 hours or so), I am just wondering if you guys are able to determine any lasting improvement on this drug.

 

[SoulStation]

@locoyeti
My T just seems like it doesn't "swell" as much in my head. It also feels less like "eeeeeeee!" and more like "Ehhhhhh..." (softer ? ) I recently gave up playing in a wedding/club date/party band that was working at least once a week for a 4 hour gig (not non stop playing but a lot)so it's been settling down recently as well. I know that i'd really have to up the dose to see more significant results and upon further research with online pharmacies, I am pretty discouraged. I think that most of the Canandian Pharmacies have been using the same dispensary because I have checked my invoice for my order with Blueskydrugs (basically a word press copy of every other Canadian Pharmacy) and in said that Westlake what who the get from. That's the one @Zimichael was getting his from. I will say one thing for sure and it's probably because I sleep like a zombie when I take it...I have done a few random nights of taking a 10 mg of flexeril before bed and the next day my T is really tame (In combo with the potiga). But I'm not pushing my luck so I've been limiting it to 1 -2 every few weeks or so. Now I'm just a night owll WHHOOOOOO!

 

[SteveToHeal]

I recently gave up playing in a wedding/club date/party band that was working at least once a week for a 4 hour gig (not non stop playing but a lot)

That's crazy that you were still playing live music with your t. Were you wearing hearing protection? I have had to stop playing live when i got t almost 11 months ago. Another thing that gets messed up from t.

I think that most of the Canandian Pharmacies have been using the same dispensary because I have checked my invoice for my order with Blueskydrugs (basically a word press copy of every other Canadian Pharmacy) and in said that Westlake what who the get from.

Why the hell can't the guys willing to try Retigabine get a steady supply? It's a real shame that the pharmacies are letting you guys (and all of us watching) down.

I have done a few random nights of taking a 10 mg of flexeril before bed and the next day my T is really tame (In combo with the potiga). But I'm not pushing my luck so I've been limiting it to 1 -2 every few weeks or so.

"Flexeril (cyclobenzaprine) is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain." - Are you concerned that taking it more regularly would cancel out the 'true' 'Potiga-only' self-trial results? Or is it more a fear of damaging kidneys from overuse of a muscle relaxant? Or that it will stop working if you take it too often? It's a pity if it giving you relief that you can't take it more regularly.

 

[SoulStation]

That's crazy that you were still playing live music with your t. Were you wearing hearing protection? I have had to stop playing live when i got t almost 11 months ago. Another thing that gets messed up from t.

Why the hell can't the guys willing to try Retigabine get a steady supply? It's a real shame that the pharmacies are letting you guys (and all of us watching) down.

"Flexeril (cyclobenzaprine) is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain." - Are you concerned that taking it more regularly would cancel out the 'true' 'Potiga-only' self-trial results? Or is it more a fear of damaging kidneys from overuse of a muscle relaxant? Or that it will stop working if you take it too often? It's a pity if it giving you relief that you can't take it more regularly.

1. Yes always wore my custom fit ER25 plugs
2. I have no idea
3. Because I've already been on up to 30 mg of flexeril at a time and on a daily basis. The side effects from daily use are intense. Also the relief it provides is intermittent at best.

 

[Johno]

@SoulStation @Christian78 @Johno
Can you describe what happens when the drug is not 'in your system'? Does it go back up to baseline, or are you experiencing some lasting improvement? There might be some effect of the drug in your system (I think it stays for 8 hours or so), I am just wondering if you guys are able to determine any lasting improvement on this drug.

Hi, I can not, because from 26 august, when I began, I take min. 50mg 3x Daily. But after lowering dose from 100 or 150, central T and spikes has not return.

 

[locoyeti]

Hi, I can not, because from 26 august, when I began, I take min. 50mg 3x Daily. But after lowering dose from 100 or 150, central T and spikes has not return.

thats pretty remarkable @Johno . this seems like it is giving you lasting relief. i see from your user updates that from a starting T rating of 6/10, all of your subsequent T ratings were 5/10 - was the disappearance of the central T and the lowering of the hissing T not enough to signify more improvement? is the tonal T the main problem? it seems like @Zimichael mostly just has tonal T and he also did not have any improvement there, so there may be some significance there. I wonder what a higher dosage would do for the tonal T. I also wonder what the difference between central/hissing/tonal T must be for you at a physiological level, and why the tonal is not responding to the dosages you've tried.

 

[Johno]

thats pretty remarkable @Johno . this seems like it is giving you lasting relief. i see from your user updates that from a starting T rating of 6/10, all of your subsequent T ratings were 5/10 - was the disappearance of the central T and the lowering of the hissing T not enough to signify more improvement? is the tonal T the main problem? it seems like @Zimichael mostly just has tonal T and he also did not have any improvement there, so there may be some significance there. I wonder what a higher dosage would do for the tonal T. I also wonder what the difference between central/hissing/tonal T must be for you at a physiological level, and why the tonal is not responding to the dosages you've tried.

I think, tonal T needs bigger dosage and maybe longer time to take. Yes, my main problem is tonal T... Central T, wich disappears, was annoying only after physical exercise or jogging, when it was very loud for several hours. And hissing, yes, it was unpleasant too. But Tonal eeeeee is very very intrusive for me.

In my opinion, Zimichael should last longer. I know, it is very hard... but, maybe success was only few days or weeks near...

 

[Zimichael]

I think, tonal T needs bigger dosage and maybe longer time to take. Yes, my main problem is tonal T... Central T, wich disappears, was annoying only after physical exercise or jogging, when it was very loud for several hours. And hissing, yes, it was unpleasant too. But Tonal eeeeee is very very intrusive for me.

In my opinion, Zimichael should last longer. I know, it is very hard... but, maybe success was only few days or weeks near...

Johno...Great that you are having positive results still at lower dosages. That is good news indeed, (seeing as Matt seems to have dropped off the planet ??? and thus no info on that aspect.). However, it is interesting for me to note that you also seem to have what I might loosely call "variable T". Not a sort of plain vanilla, single tone, never changing, no matter what (well except more noise or drug damage that is!) constancy. Also this "tonal T" may be a more deep seated version of this beast. It sure feels like it that's for sure.
*[@locoyeti ...astute thinking as always! This may be something to keep an eye on in the research reports, and "working models", etc.]

Regarding me doing Trobalt for more time Johno. Well...there are a few answers to that, but one clear one is the darn supply just dried up and I could not get any more! Thus the fast ramp-up and fast taper off I had to do. *[See my dose chart].
I just called CanadaPharmacyOnline a moment ago and said: "You people have it on file to have called me by yesterday about Trobalt availability. Is it in stock yet or not, c/o Westlake Pharmacy in the UK???" I got the usual answer of it is not showing out of stock on the Ezogabine web page itself, but then the lady looked at the notes and said "Oh!"..."Yeah, OH! is right if you run out of this stuff at max dose and can't get it!"...Thus I got the again, same run around, of we will email Westlake in UK and see if it is available for sure. Call back on Monday." Which is what I had done, again, a week ago and they had not returned the call...And so on.
So if @SoulStation gets his from this same UK supplier (Westlake is also Blue Sky Drugs' drop-shipper), then we know that CandaPharmacyOnline are a total waste of carbon. Time will tell...shortly.

Aside from that Johno, I have major dental stuff to do in a few weeks and did not want to be on any drug that was affecting my tinnitus and hyperacusis. I went through that nightmare already in Bangkok in 2013. As you may recall, the Trobalt increased my hyperacusis and potential "ear bruising" by about 50% sensitivity. Not so cool. And a big warning flag to me about staying clear of "sound damaging situations".

Good luck with your continued progress and "availability" issues too.

Best, Zimichael

 

[locoyeti]

Johno...Great that you are having positive results still at lower dosages. That is good news indeed, (seeing as Matt seems to have dropped off the planet ??? and thus no info on that aspect.). However, it is interesting for me to note that you also seem to have what I might loosely call "variable T". Not a sort of plain vanilla, single tone, never changing, no matter what (well except more noise or drug damage that is!) constancy. Also this "tonal T" may be a more deep seated version of this beast. It sure feels like it that's for sure.
*[@locoyeti ...astute thinking as always! This may be something to keep an eye on in the research reports, and "working models", etc.]

Regarding me doing Trobalt for more time Johno. Well...there are a few answers to that, but one clear one is the darn supply just dried up and I could not get any more! Thus the fast ramp-up and fast taper off I had to do. *[See my dose chart].
I just called CanadaPharmacyOnline a moment ago and said: "You people have it on file to have called me by yesterday about Trobalt availability. Is it in stock yet or not, c/o Westlake Pharmacy in the UK???" I got the usual answer of it is not showing out of stock on the Ezogabine web page itself, but then the lady looked at the notes and said "Oh!"..."Yeah, OH! is right if you run out of this stuff at max dose and can't get it!"...Thus I got the again, same run around, of we will email Westlake in UK and see if it is available for sure. Call back on Monday." Which is what I had done, again, a week ago and they had not returned the call...And so on.
So if @SoulStation gets his from this same UK supplier (Westlake is also Blue Sky Drugs' drop-shipper), then we know that CandaPharmacyOnline are a total waste of carbon. Time will tell...shortly.

Aside from that Johno, I have major dental stuff to do in a few weeks and did not want to be on any drug that was affecting my tinnitus and hyperacusis. I went through that nightmare already in Bangkok in 2013. As you may recall, the Trobalt increased my hyperacusis and potential "ear bruising" by about 50% sensitivity. Not so cool. And a big warning flag to me about staying clear of "sound damaging situations".

Good luck with your continued progress and "availability" issues too.

Best, Zimichael

hi @Zimichael , is your H still elevated, or has everything come back to normal after you stopped the trobalt?

 

[Danny Boy]

Seriously need this stuff asap...T is driving me crazy, have it in both ears...I am really considering suicide as I can't cope...Would my gp give it to me if I explain it's life or death?

 

[Rube]

Seriously need this stuff asap...T is driving me crazy, have it in both ears...I am really considering suicide as I can't cope...Would my gp give it to me if I explain it's life or death?

you have options bud. you can get in on the am101 trials or the autifony trials which should start soon enough. or if you can convince a doctor to prescribe retigabine then go that route. if not you should def see a dr and see if he can prescribe something to help you cope for the time being. it gets better, i didnt believe it but it does. go and read some of the success stories on this forum, they gave me a lot of hope and helped me deal with this.

 

[Danny Boy]

you have options bud. you can get in on the am101 trials or the autifony trials which should start soon enough. or if you can convince a doctor to prescribe retigabine then go that route. if not you should def see a dr and see if he can prescribe something to help you cope for the time being. it gets better, i didnt believe it but it does. go and read some of the success stories on this forum, they gave me a lot of hope and helped me deal with this.

Thanks for the advice. I'n trying my best, but I'm breaking down...The t has got louder than before and is so bad, I would rate it a 10/10...I need help quick, fast or my life may not be worth living. I really want to be positive, but everything that would help seems so far away. I can't got on to the autifony trials because my hearing is fine. AM-101 I am on that trial am waiting the injection. They won't do my other ear though, as the ear infection was only in my left ear...Just that the t decided to go to the other ear. Really am losing my sanity. Honestly, I still can't believe this condition exists and is not cured yet...How could the world let millions suffer? Sorry, am rambling. Either way, I am losing all hope....Just a reduction in volume would be a miracle for me, not a total cure but just not as loud as it is...

 

[rtwombly]

Danny Boy, these are still early days for you. Believe me when I say, it does get easier to take. Don't consider giving in. Just don't give it a thought! There are plenty of things that you can try that have helped other people. If you're a 10/10 case, the chances are very good you'll get some relief. Not an immediate cure, but relief.

Matter-of-fact, I've got just the doc for you to try! In a thread here: https://www.tinnitustalk.com/threads/cranial-osteopathy.6486/, there's a link to a story about a cranial osteopath whose technique cured a woman of tinnitus after 5 years. Strangest thing about the story is that she got tinnitus from ototoxic meds, not physical trauma as you'd expect with an osteopath. The same doc has a video testimonial on his site from a man you got a 90% reduction 15 years after getting tinnitus from a steering wheel to the face. That story is on this page: http://www.wellsbeingtechnique.co.uk/videos/, and Dr Wells' practice website is http://hectorwells.moonfruit.com/. He's in Banbury, Oxfordshire.

I great every grand claim with a grain of salt, and claims out of the medical norm with at least a teaspoon. But when the beaten path leads you in circles, the only sensible thing is to strike out through the woods. Please let us know if you decide to give Dr Wells a try on the thread I quoted above. If you need more ideas for how to deal with your tinnitus, hunt around more on tinnitustalk or feel free to start a conversation with me.

We have good reasons to hope, Danny. No matter how bad it seems right now, keep picturing yourself looking back at these past few months as nothing but a bad memory. After nine months I'm still ringing, but I can look back at how low I felt those first few months and it seems like somebody else's story.

 

[rtwombly]

@Zimichael and anybody else in the US trying to get a Potiga prescription filled, have you looked into GSK's assistance programs? Potiga is included, and the monthly income allowance is pretty generous. The catch is that you can't have drug benefits on your health insurance...but I'm not 100% sure that means just ANY drug benefits or benefits that might cover Potiga. For those on Medicaid it's a different story.

The programs are linked here: http://www.needymeds.org/drug_list.taf?_function=name&=name&name=Potiga

 

[Christian78]

I don't understand why Kv7.2 and 7.3 have anything to do with it, but I'll take the doctor's word for it. From reading about how they excluded Kv7.1 from Retigabine, I think it would have to be two different drugs to target Kv3 and Kv7. Different chemicals interact with different channels. It'd be great if they could target ALL the significant channels without touching the others, but that seems a long ways off.

But autifony is being made to target only kv 3 specialty in audio cortex, and not to touch other...

 

[Christian78]

@SoulStation @Christian78 @Johno
Can you describe what happens when the drug is not 'in your system'? Does it go back up to baseline, or are you experiencing some lasting improvement? There might be some effect of the drug in your system (I think it stays for 8 hours or so), I am just wondering if you guys are able to determine any lasting improvement on this drug.

There must be a reason why my t in left ear is gettig worse, side effect are less but when you teke a pill after 20-40 min it "his you" like a rubber hummer, so you must wait 15-30 min to pass, the worst one is i think afternoon one. Sometimes nothing, sometimes i can not write a single word, i must lay down until it goes over.

 

[Danny Boy]

Danny Boy, these are still early days for you. Believe me when I say, it does get easier to take. Don't consider giving in. Just don't give it a thought! There are plenty of things that you can try that have helped other people. If you're a 10/10 case, the chances are very good you'll get some relief. Not an immediate cure, but relief.

Matter-of-fact, I've got just the doc for you to try! In a thread here: https://www.tinnitustalk.com/threads/cranial-osteopathy.6486/, there's a link to a story about a cranial osteopath whose technique cured a woman of tinnitus after 5 years. Strangest thing about the story is that she got tinnitus from ototoxic meds, not physical trauma as you'd expect with an osteopath. The same doc has a video testimonial on his site from a man you got a 90% reduction 15 years after getting tinnitus from a steering wheel to the face. That story is on this page: http://www.wellsbeingtechnique.co.uk/videos/, and Dr Wells' practice website is http://hectorwells.moonfruit.com/. He's in Banbury, Oxfordshire.

I great every grand claim with a grain of salt, and claims out of the medical norm with at least a teaspoon. But when the beaten path leads you in circles, the only sensible thing is to strike out through the woods. Please let us know if you decide to give Dr Wells a try on the thread I quoted above. If you need more ideas for how to deal with your tinnitus, hunt around more on tinnitustalk or feel free to start a conversation with me.

We have good reasons to hope, Danny. No matter how bad it seems right now, keep picturing yourself looking back at these past few months as nothing but a bad memory. After nine months I'm still ringing, but I can look back at how low I felt those first few months and it seems like somebody else's story.

I'm trying my best, to stay alive...I really am, I don't want to die, but my tinnitus is driving me to it...I've tried sound therapy and massages but the relief is temporary at best. I have a daughter and a girlfriend. My daughter's name is Rose and she's only 17 months old and I'd hate for her to never know me, or me not know her. It's a horrible thought, but yet, the tinnitus is driving me crazy breaking me down to tears. I want to be able to bear this and be able to live, but the more I continue to live the harder and worse it gets. Tinnitus isn't fair and it affects the lives of my entire family, why more isn't done about this condition shocks me as having cancer, knowing you will finally die is easy when compared to having tinnitus, as I suffer 24 hours a day and I know that I want to die and I know that it's gonna be painful, as I'm gonna have to do it successfully. Sorry, I really don't want to feel like this, but I feel helpless and trapped. Then my girlfriend who also has autism, wouldn't be able to cope with life without me, she struggles as it is and I helped loads and made sure she was ok. This tinnitus won't just destroy my life, but the people I love. This is why I'm desperate to find a way to reduce the volume, so I can look after my family and get back to my normal life.

 

[Zimichael]

@Danny Boy ... I'm not trying to be a jerk here, but your posts really belong on the main Support page as this thread is specifically about Retigabine. The Support page will open up your reply base to a lot of very caring and knowledgeable people who I know are not on this thread. You are only a few months in with T and there are many options for you. Serioulsy. And if you don't think I feel your pain and know where you are coming from, just take a glance at my history in my Profile. I have been in your shoes, very, very fully.

Also, it may be an error to consider Trobalt a silver bullet. Go back and look what happened to Hengist. It was the opposite of a "fix". For me (though I am in a completely different category regarding time with tinnitus), it was also "harder" not easier with Trobalt. It made my hyperacusis worse and that washed over into my T making it a bit louder and more challenging too. Not what you want, and who knows how it will affect you?

Retigabine is an "experimental" medication...not a proven cure. I suggest you go with some potentially safer and more 'proven' approaches for your still 'short term' T. Take rt's advice. Request help from members on the Support page who live int he UK. Look at short term T treatments in the TT archives...And hell, you may be the envy of us all by being able to get into the Autifony trial! The real potential "platinum bullet".

Good luck and hang in there. Zimichael

 

[Zimichael]

hi @Zimichael , is your H still elevated, or has everything come back to normal after you stopped the trobalt?

Loco'... Thanks for asking and remembering that. Yes, my hyperacusis has come down to almost where it was before starting the Trobalt. Also early Saturday morning (around 4:00 am pee time wake up ) I also realized my slightly higher T seemed quieter by a fraction. Back to the "9" level from the "9.1" I guess. Noticeable, as it seemed just less "aggravated" or something, not really 'quieter' actually. My suspicion is the slow reduction in plasma load is doing that, as for sure my 'pee' has started to be 'non aromatic' again as per the "Potiga petals and apple blossoms" smell, etc.

@Zimichael and anybody else in the US trying to get a Potiga prescription filled, have you looked into GSK's assistance programs? Potiga is included, and the monthly income allowance is pretty generous. The catch is that you can't have drug benefits on your health insurance...but I'm not 100% sure that means just ANY drug benefits or benefits that might cover Potiga. For those on Medicaid it's a different story.

The programs are linked here: http://www.needymeds.org/drug_list.taf?_function=name&=name&name=Potiga

rt'... Yeah, you may recall that way, way back in this thread I said in detail how one could get Potiga free in the USA c/o "Patient Assist" program at GSK (and similar programs with all major Big Pharma manufacturers). One has to have a prescription and also no 'drug coverage' insurance. You can have medical insurance, but have to prove the no drug coverage part.
I used to get a number of meds free c/o Patient Assist programs when I had no insurance pre "Obamacare". Now I have medical insurance plus drug coverage and have to pay full ticket for Potiga as it is not in the 'formulary drugs covered list'...not surprisingly.

Best, Zimichael

 

[SoulStation]

how

Loco'... Thanks for asking and remembering that. Yes, my hyperacusis has come down to almost where it was before starting the Trobalt. Also early Saturday morning (around 4:00 am pee time wake up ) I also realized my slightly higher T seemed quieter by a fraction. Back to the "9" level from the "9.1" I guess. Noticeable, as it seemed just less "aggravated" or something, not really 'quieter' actually. My suspicion is the slow reduction in plasma load is doing that, as for sure my 'pee' has started to be 'non aromatic' again as per the "Potiga petals and apple blossoms" smell, etc.



rt'... Yeah, you may recall that way, way back in this thread I said in detail how one could get Potiga free in the USA c/o "Patient Assist" program at GSK (and similar programs with all major Big Pharma manufacturers). One has to have a prescription and also no 'drug coverage' insurance. You can have medical insurance, but have to prove the no drug coverage part.
I used to get a number of meds free c/o Patient Assist programs when I had no insurance pre "Obamacare". Now I have medical insurance plus drug coverage and have to pay full ticket for Potiga as it is not in the 'formulary drugs covered list'...not surprisingly.

Best, Zimichael

I still have no drug coverage at all. I have a script. I used it to order from Canada but I just had to take a picture of It. And I suspect it hasn't shipped cause we have The same empty drop shipper. You think that it might work for me? Contact info GSK?

 

[Zimichael]

but I just had to take a picture of It.

SS...not sure by what you mean here??? Take a picture of what?

Hell yeah, if I had no drug coverage I would jump on GSK's patient assist and do it anyway, Canada or not! If you are below a pretty high income (IMHO) then it can be quite quick AND a continued supply!!!
To make it confusing GSK has two portals and God knows which is the right one until you try I guess...
http://www.gskforyou.com/
https://www.bridgestoaccess.com/

Regarding the UK drop shipper, etc. Theoretically if you have not been informed that it has NOT shipped then maybe it has?! However, it could also mean Blue Sky are also a waste of carbon and have not bothered to tell you! I was able to get an "it shipped date" from CanadaPharmacyOnline a few days after my initial order, by phoning them and asking. Presumably Blue Sky can do that too?!
In the end the only way you may know is when the stuff shows up in your mailbox. Should be around two weeks from order date...I wait with bated breath to know if it will!

P.S. You ordered same as me before right? The 84 x 100 mg pills???

Good luck... Zimichael

 

[SoulStation]

SS...not sure by what you mean here??? Take a picture of what?

Hell yeah, if I had no drug coverage I would jump on GSK's patient assist and do it anyway, Canada or not! If you are below a pretty high income (IMHO) then it can be quite quick AND a continued supply!!!
To make it confusing GSK has two portals and God knows which is the right one until you try I guess...
http://www.gskforyou.com/
https://www.bridgestoaccess.com/

Regarding the UK drop shipper, etc. Theoretically if you have not been informed that it has NOT shipped then maybe it has?! However, it could also mean Blue Sky are also a waste of carbon and have not bothered to tell you! I was able to get an "it shipped date" from CanadaPharmacyOnline a few days after my initial order, by phoning them and asking. Presumably Blue Sky can do that too?!
In the end the only way you may know is when the stuff shows up in your mailbox. Should be around two weeks from order date...I wait with bated breath to know if it will!

P.S. You ordered same as me before right? The 84 x 100 mg pills???

Good luck... Zimichael

Hey Michael
I meant that all I had to do was send them a picture of my script that I took with my iPad in order for them to fill it. I am going to check right now on the status to see if it's shipped yet. Thanks for the links btw! I am very skeptical of BSD right now and yes the order was originally for 180 50 mg tabs... but they said they only had boxes of 84 and I said, well could we do some simple math and you give me the 100 mgs? So they said yes...when I last looked at my order it was for 168 100 mg pills --- so I think that was a mistake on their part which i was ok with (getting a 2 mo. supply at one time). But the whole thing seemed almost too easy and I have a feeling they just haven't sent it. I'll check back in later on this.

Hope you're enjoying your day Michael.
B

 

[dochoppy]

has the Retigabine made anyones tinnitus or hyperacusis worse? I could probably get an Rx for it if I really wanted to and I would like to gather some information, Is it really helping?