Retigabine (Trobalt, Potiga) — General Discussion

Regarding Retigabine/Trobalt dosage...

Man, we have SO been over all this a zillion times...and in circles about it too. O.K. I exaggerate, but to me, and to many of us who have been in on this since the beginning, it comes down to these salient points:

1. ANY dose is the sole responsibility and decision of the user/trialee.
2. ANY user/trialee should do as much due diligence as possible to understand what they are getting into before starting.
3. It is 100% clear from our TT trialees (forget the "other recommendations" really, as they were not for "tinnitus"), that every individual seems to experience Trobalt dosage differently. Some get smashed at 100 mg, others can take 1,200 mg in one dose and be humming along just fine. Now try and pick your "correct dose" from that!!!
4. The usual, safe, look-and-see approach to any med/drug with "doubts" (and not zillions of people having tried it for decades, etc., etc, to get a nice bell curve experience base)...is to taper up slowly.
5. Given all the above, we here, who have studied Trobalt, its pharmacodynamics, side effects, and every nuance we can get hold of (which does not mean that it is by any means a 'complete' understanding at all!)...have come to the conclusion that dose is indeed king. That higher doses are indeed more likely to have an effect on tinnitus, than lower doses. This from both the scientific literature and our testers to date.

Given the above...it's a "pick your own poison" or "saviour" choice as to how you start, taper up, don't taper up, one-off smash dose it, mix it with Keppra, etc., etc...It's YOUR decision, as about every approach seems to have potential merit or dangers.

Good luck to all who try this drug, as it really is an "experiment" here and each and every new user adds to our combined knowledge base...especially if they report their results accurately in the User Reports, etc.

Thanks much, Zimichael
 
if you get caught in customs, they will put you in prison. be careful

No you wouldnt in the UK. In canada though it is a another story and could very well face charges there.
Europe is pretty good about this though unless it is as said narcotics or drugs that are also used not just for medication but also widely used for pleasure like benzoes for example........
 
@Martin69 @Danny Boy or @ anybody who knows
I may to go to Spain to get some Trobalt for myself, so I repeat Hotspur's question: no problems with the customs?

Dana. You can just send the stuff in the post to your address. It'll get through customs as it isn't illegal to import prescriptions meds abroad. The UK has a loophole, where you can import drugs from counties abroad. So buy in Spain and send it to your address problem solved.
 
Dana. You can just send the stuff in the post to your address. It'll get through customs as it isn't illegal to import prescriptions meds abroad. The UK has a loophole, where you can import drugs from counties abroad. So buy in Spain and send it to your address problem solved.
For Dana to send the trobalt to UK is pretty much ok and generally the same for Europe as certified by Martin 69..
Is Dana from the UK? If so then she can drive there and get it and drive back with it in her car. She should be okay with no trouble from the UK customs if she is bringing for her own personal use so not too much. If she is in Europe she can drive to Spain too as no borders depending on where she is from in Europe.
Otherwise Canada can be a bit of a problem - the States potentially a problem but they tend to turn a blind eye in the States to import without prescription. Not too sure what are the rules or the practice in Australia...........
 
For Dana to send the trobalt to UK is pretty much ok and generally the same for Europe as certified by Martin 69..
Is Dana from the UK? If so then she can drive there and get it and drive back with it in her car. She should be okay with no trouble from the UK customs if she is bringing for her own personal use so not too much. If she is in Europe she can drive to Spain too as no borders depending on where she is from in Europe.
Otherwise Canada can be a bit of a problem - the States potentially a problem but they tend to turn a blind eye in the States to import without prescription. Not too sure what are the rules or the practice in Australia...........

I'd be too scared to go through customs...I'd rather send it through the post then get questioned at the airport. That's just my take on it.
 
Hi mate,when you say no problems,do you mean you just walked past them,or they had a look in your bags?

They were in my back pack along with some bromazepam which is not even sold in the UK. They x-rated it at all airports so I'm pretty sure they just didn't give a damn.

if you get caught in customs, they will put you in prison. be careful

Oh please.
 
Hi guys,just after a bit of advice,they do a pack of 84 200mg,was thinking,first week 200mg per day,then up to 400mg for 35 days,last week back to 200mg,is this a reasonable idea,or better to try the tapering more gradual?Thank you
 
Ok folks: Finally received my RTG, took about a month to receive it. So....need advice on taking it or not. I'm a 66yr. old man that had a heart attack back in August of 2014. I had 80% blockage in one artery and had an angioplasty and a stent placement done. I feel healthy now and stay fit by snowboarding and playing hockey in the winter and golf, biking and fishing in the summer months. I take three meds for my heart, they are Atorvastatin 40mg., Lisinopril 5mg, and Clopidogrel 75mg once a day. Any suggestions would be most appreciated. I'm thinking 100mg once a day for a couple of weeks to see if there is any effect. I would have to cut the pills in half as they are 200mg. Your thoughts???? Regards, Bob Saint
 
Any suggestions would be most appreciated. I'm thinking 100mg once a day for a couple of weeks to see if there is any effect. I would have to cut the pills in half as they are 200mg. Your thoughts????
Well, what does your own doctor have to say about it? I'd listen to him or her before I'd listen to anybody on a message board, including me. Retigabine is absolutely not a benign drug. Far from it. And dosing retigabine is not in any way a game, although some here almost seem to be treating it as such. I mean no offense, but when I asked my own internist about it, he said, "You're not seriously thinking about taking this stuff, are you? Have you read the package insert?"

Look, I'm not trying to rain on anybody's parade. My ears ring as much as the next guy's. But every once in a while a reality check is called for. And there you have it.

So please check with your doctor, who knows you far far better than any of us.

All the best -

stephen nagler
 
Well, what does your own doctor have to say about it? I'd listen to him or her before I'd listen to anybody on a message board, including me. Retigabine is absolutely not a benign drug. Far from it. And dosing retigabine is not in any way a game, although some here almost seem to be treating it as such. I mean no offense, but when I asked my own internist about it, he said, "You're not seriously thinking about taking this stuff, are you? Have you read the package insert?"

Look, I'm not trying to rain on anybody's parade. My ears ring as much as the next guy's. But every once in a while a reality check is called for. And there you have it.

So please check with your doctor, who knows you far far better than any of us.

All the best -

stephen nagler

I think it is fairly clear that Dr Nagler is never going to take retigabine. It is also clear that this drug is not a cure for tinnitus, but from the anecdotal evidence submitted from the brave human Guinea pigs here on this forum, it does appear to have some positive effect in most cases, if only temporarily.

I would give the drug a shot for a month if I could get some. I would also not be too worried about the no doubt horrific 'package insert' story of side effects. One month to see if it knocked years of tinnitus to any degree would be enough proof. One month is hardly likely to give me any lasting problems either, as issues develop after 'several years' on the drug. As the following article explains:

http://www.epilepsyscotland.org.uk/index.php?act=viewNews&docId=148

A big "thank you" to those on the forum who have trialled retigabine and shared their experiences
 
I think it is fairly clear that Dr Nagler is never going to take retigabine.
No, but I seriously considered it a few months ago.

I would give the drug a shot for a month if I could get some. I would also not be too worried about the no doubt horrific 'package insert' story of side effects.
I totally understand why you might feel that way. But @thesaint is 66-years-old and has already had one heart attack. Moreover, he is taking a statin, an angiotensin-converting enzyme inhibitor, and a P2Y12 platelet inhibitor. And in view of that rather impressive pharmacological cocktail, I just think it would be a good idea for him to run it all by his own physician before adding in a potassium channel opener.

Which is all I suggested:
So please check with your doctor, who knows you far far better than any of us.
@Mark662, I sincerely hope you do not have a problem with that!

stephen nagler
 
I think it is fairly clear that Dr Nagler is never going to take retigabine. It is also clear that this drug is not a cure for tinnitus, but from the anecdotal evidence submitted from the brave human Guinea pigs here on this forum, it does appear to have some positive effect in most cases, if only temporarily.

I would give the drug a shot for a month if I could get some. I would also not be too worried about the no doubt horrific 'package insert' story of side effects. One month to see if it knocked years of tinnitus to any degree would be enough proof. One month is hardly likely to give me any lasting problems either, as issues develop after 'several years' on the drug. As the following article explains:

http://www.epilepsyscotland.org.uk/index.php?act=viewNews&docId=148

A big "thank you" to those on the forum who have trialled retigabine and shared their experiences

Before you do that...I suggest the other drug I banged on about. I said I wouldn't recommend it anymore, so can't use it's name.
 
No, but I seriously considered it a few months ago.


I totally understand why you might feel that way. But @thesaint is 66-years-old and has already had one heart attack. Moreover, he is taking a statin, an angiotensin-converting enzyme inhibitor, and a P2Y12 platelet inhibitor. And in view of that rather impressive pharmacological cocktail, I just think it would be a good idea for him to run it all by his own physician before adding in a potassium channel opener.

Which is all I suggested:
@Mark662, I sincerely hope you do not have a problem with that!

stephen nagler

@Dr. Nagler No problem at all. It would be sensible to do so in Bob's case.
 
What dose of each do you take mate and are they all prescribed?

None of them are prescribed...The doctors won't give me anything off label...They would rather have seen me dead then risk giving me anything off label.
 

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