Retigabine (Trobalt, Potiga) — General Discussion

[RichL]

Haha. Yeah..no offense to these members but think I will let my doc make the call.

Fare enough, each to there own.

Rich

 

[Telis]

If I recall correctly, benryu's chart had 600mg max daily maintenance dosage.
I believe Mpt's max dosage was 300mg/day ? (shows efficacy at lower dosages)
Also, Christian needs to stay on the drug for at least 3 months in order to draw conclusions.
I don't think he should give up, but I feel that people should be more supportive and be more patient.
If you're not on the drug you should be thankful somebody who is on it is sharing his experience on a public forum - a drug that hasn't been trialled for tinnitus ever before on a human being.
Keep in mind, people who are on this drug are scared of the unknown - so be considerate.

Well said Dan,

Thanks so much (all of you on retigabine) not just for testing, but mainly for sharing your experiences!! We all appreciate the feedback!

I watch this thread every day. Good luck!!

 

[valeri]

We are all more than grateful for the members who are taking this drug and also keeping us updated on their progress.

So please guys don't stop posting, whatever the current situation may be. We all share the same hope!!!

 

[Christian78]

You were tapering off benzodiazepines recently. Return to your normal dosage and it will probably return tinnitus to where it was. Stop complaining about being a lab rat you knew that as soon as you read the first post about this drug the whole point is to speculate about how this works and how it may help people.

Dear foremost neurosientist, I got of 1 mg of diazepam/valium 3 weeks ago. but as this worse i was forced to take clnazepam that is 20x stronger than valium and there was no effect.

People here listen and then become foremost worlds neouroscientist and say you done this ot that, but when they come to doctor and say this happen to me, and doctor gives them explanation that they know it is not possible then they feel bad, a bit hypocracy, here you become doctors.

 

[SteveToHeal]

@Hengist ,I think you owe Christian an apology.

I agree with dan here Hengist. This is not a forum to reprimand people for sharing their stuggle, especially under the precarious circumstances of taking an untested drug!! The primary function of this board is a one of support. Christian is obviously having a hard time. The last thing he needs to hear, is what you wrote. Don't go shooting people down or telling them what or what not to do. It's not the first time your bullish attitude on this forum has infuriated me. Our primary "selfish" concern is to recover from T, not be here for the use of others. You should be grateful that people on here are willing to try it and report their experience. Not the other way around.

 

[Telis]

I agree with dan here Hengist. This is not a forum to reprimand people for sharing their stuggle, especially under the precarious circumstances of taking an untested drug!! The primary function of this board is a one of support. Christian is obviously having a hard time. The last thing he needs to hear, is what you wrote. Don't go shooting people down or telling them what or what not to do. It's not the first time your bullish attitude on this forum has infuriated me. Our primary "selfish" concern is to recover from T, not be here for the use of others. You should be grateful that people on here are willing to try it and report their experience. Not the other way around.

F--k ya. Couldn't agree more!!!

 

[Christian78]

Ain't that interesting... so you calculated him being more valuable and should be given special treatment not to be upset at all costs even if he might upset a lot of other members by his dismissive and rude tone towards friendly and possibly helpful advice? While the interest of others was genuine and possibly helpful, your is probably not, as I do not see you defending those people who had their advice being dismissed without an argument by accusation of experimenting and treating him as a guinea pig.



Fow what? This is something that deserves an apology as I would not blame @Zimichael and @locoyeti if they just ignored him after this.


I know he is suffering but there is no reason to lash out on people who are trying to help! A simple "no thank you, I will do as I see fit" is enough.

@locoyeti I do apologize.
@Zimichael I do apologize

I took it on my own responsibility. I did not expect that I will feel accused that I made mistake here or there. We are not and you are not Neuroscientists, and what and why it happen we can not know. When you say it is not possible that problem is getting used to medicine, i wonder how you feel when a doctor comes and tells you something you know it is opposite, but you cant do nothing, but say when you get out office this doctor does not know what he talks about. If feel hypocritical. And I am not bad person, I wish I had power to cure you all, and that T stay with me. I just feel injustice when my dear friends start saying it is not possible and saying I made error. nothing, is 100.00% sure, so none medicine is too. It is life.

And if you comment sometimes bad on me i will go over it, and I will not ignore you. Maybe you had supper bad day, and you were sad and you told something you did not want. If you did not seen, we are just humans and I assume i have a right to make mistake. I did not call you bad names, and swear or something. I am human too. Try to understand me too, i can make mistakes, can I.

I suppose biggest mistake was to be open what i take, and how do I feel. Then I would not be on stage to be dissected into how and what. I fell you are also said medicine stooped working for me, and afraid it can happen to you, in 3 months or 1 year. But I said 100.00% we are not same it maybe happen ONLY to me.

Dont be easy to judge. Please

 

[valeri]

@Christian78
Thank you for keeping us up to date with your situation.
As others said this is the first time that this drug had been tested for t so no need to feel bad.
It breaks my heart that you are not as good as last week, but don't loose hope.
You feel what you feel and we should all respect that.
I don't think others meant to be judgemental, they are just trying to help, maybe it came out the wrong way.
It's a long tread, lot of information has been shared so everyone is just trying to share what they think the problem may be.
We all hope that your t improves again, it's hard to tell what the reason for this setback is, I don't think even doctors would know more than us.
Please keep us posted on your progress.
Take care!

 

[Christian78]

Going by a few of our fellow posters that are in the know, one has to start with a low dose of 50mgs 3x a day and slowly increase over a period of weeks to a maximum dose of 1200mgs a day, I believe @Christian78 increased either too quickly or started on too higher a dose to begin with,(someone may be able to correct me if I'm slightly incorrect on the doses).

Rich

Well I did not had a dosage of 50mg to buy at first place. All this made me quite sad as i have emotions and feeling.

Anyway there was no dosage of 50 mg, and on the paper that i scanned it say recommended start dosage is 100 mg. I used it for 2 weeks, and then went to 200 mg, (that is 200 x 3=600 mg I never went to maximum dosage of 1200 mg).

Now when I expose this detail public there will be many people who will say oh you should have slowly gone to 1200 mg, or you should have not taken pill just 50 mg.

First guy who used this medicine told me 3 days 100 mgx3, 3 days 200mgx3 and then 300 mg x3 @Mpt in a private message.

So what i know, doctor said I should definitely not take it for tinnitus, but i took it, there were information on paper of medicine, there was @Mpt ... only later Benry wrote about dosages, dont blame i took it just slower... and yes it is like it is.

 

[CathodeRaySound]

@Christian78

You have no reason to apologize for anything. Everybody on this forum should maintain a level of sympathy since we are all going through the same struggle of tinnitus. Only a psychopathic antisocial asshole would disregard the feelings of frustration, hopelessness, desperation, and fear others on here go through, especially when they themselves go through it too. Why else would anyone be here on this forum if it wasn't to share these common feelings. I wouldn't concern myself with anything or anyone negative on this forum, you deserve more for what you're already doing.

Edit: I would go as far as to say, you don't need to update us on anything anymore if that's what you feel is necessary for your own stability. You're not a test rat, you're a human going through the same struggle as I am.

 

[SteveToHeal]

Only a psychopathic antisocial asshole would disregard the feelings of frustration, hopelessness, desperation, and fear others on here go through, especially when they themselves go through it too.

Well said! Big copper ones there CathodeRaySound. I nearly said something along those lines but in the fear of my message being deleted, I toned it down. Agreed, Christian has NO obligation to update us. It is his process and should be respected.

 

[Mpt]

@Mpt Could you please clarify about your Nasonex use from the user experiences, please? Like how often and for how long have you been using it? Nobody on here is going to think this way, but when presenting our case to doctors, some of them may say, "That guy must have been a clogged Eustachian tube, and the Nasonex cured it."

I've been using Nasonex for the past 10 years basically-- my tinnitus had nothing to do with eustachian tube conjestion, etc...it was from trauma after having my ear syringed. I used Nasonex over the course of my first 5 months withs tinnitus, then I started retigabine and within two weeks my tinnitus was basically imperceptible so I have no doubt that my improvement was not due to nasonex

 

[Hengist]

@locoyeti I do apologize.
@Zimichael I do apologize

I took it on my own responsibility. I did not expect that I will feel accused that I made mistake here or there. We are not and you are not Neuroscientists, and what and why it happen we can not know. When you say it is not possible that problem is getting used to medicine, i wonder how you feel when a doctor comes and tells you something you know it is opposite, but you cant do nothing, but say when you get out office this doctor does not know what he talks about. If feel hypocritical. And I am not bad person, I wish I had power to cure you all, and that T stay with me. I just feel injustice when my dear friends start saying it is not possible and saying I made error. nothing, is 100.00% sure, so none medicine is too. It is life.

And if you comment sometimes bad on me i will go over it, and I will not ignore you. Maybe you had supper bad day, and you were sad and you told something you did not want. If you did not seen, we are just humans and I assume i have a right to make mistake. I did not call you bad names, and swear or something. I am human too. Try to understand me too, i can make mistakes, can I.

I suppose biggest mistake was to be open what i take, and how do I feel. Then I would not be on stage to be dissected into how and what. I fell you are also said medicine stooped working for me, and afraid it can happen to you, in 3 months or 1 year. But I said 100.00% we are not same it maybe happen ONLY to me.

Dont be easy to judge. Please

Of course we are not scientists but since we would like to see your problem go away we have an urge to tell what we see is a cause of it and how it can be changed positively. I would not play around with dosages as they suggested but I would consider returning benzodiazepine dosage and uptake to where it was a short time before you completely stopped using them for a short duration, a day or two. Is it a test? Yes, but is is harmful? No, it is not as you have been previously on those things. Your spikes might go away on their own if you provide stable situation for a few weeks or months, benzodiazepine withdrawal tinnitus often lasts only a few weeks. I do not think that the medicine has stopped working because you developed resistance as that happens over much longer periods of time than a month or even half a year. Is it possible? Yes but that would mean that your body is just completely weird and that is not something that I would assume as the most likely cause. Among the things that I am most concerned with retigabine is blindness and skin discoloration which they did not clarify are they permanent or not, this drug is so rare in usage because of it's very frequent sideeffects, the drug dropping in effectiveness is not nearly as problematic as those NEW possible problems. A member that used some other drugs was talking about how he now has new neurological problems because of those. That is much more problematic than taking a drug and having no effect at all. Other possible explanatoins could be that you are eating some fruit that is decreasing the active quantity of the drug in your metabolism or that you use some toothpaste with ototoxic or neurotoxic substances which actually a lot of toothpastes have, any change related to something you put in your body in last 2-3 weeks can affect your tinnitus. Especially if you have any neck and jaw problems that are getting worse.

I've been using Nasonex for the past 10 years basically-- my tinnitus had nothing to do with eustachian tube conjestion, etc...it was from trauma after having my ear syringed. I used Nasonex over the course of my first 5 months withs tinnitus, then I started retigabine and within two weeks my tinnitus was basically imperceptible so I have no doubt that my improvement was not due to nasonex

Can you tell me what frequency was your tinnitus? Most usual is around 7khz, there are videos with full human hearing range on youtube.

 

[Jay M]

Its called taking matters into your own hands when the support that everyone here was seeking from a Doctor got "live with it" in every language. This is clearly a group effort deciding to do something about it instead of waiting. I respect you and everyone else who is volunteering themselves and spending the money. Advice is coming from people who want to help you and help each other. No one is claiming to be a neurologist but are likely offering advice from experience or a simple opinion. Don't forget we all under stand each others suffering here with T. And remember, Doctors practice medicine on you as a patient and you are to remain patient while they practice. Keep that in mind the next time your Doc prescribes you something with many side effects.

Dear foremost neurosientist, I got of 1 mg of diazepam/valium 3 weeks ago. but as this worse i was forced to take clnazepam that is 20x stronger than valium and there was no effect.

People here listen and then become foremost worlds neouroscientist and say you done this ot that, but when they come to doctor and say this happen to me, and doctor gives them explanation that they know it is not possible then they feel bad, a bit hypocracy, here you become doctors.

 

[rtwombly]

I've been using Nasonex for the past 10 years basically-- my tinnitus had nothing to do with eustachian tube conjestion, etc...it was from trauma after having my ear syringed. I used Nasonex over the course of my first 5 months withs tinnitus, then I started retigabine and within two weeks my tinnitus was basically imperceptible so I have no doubt that my improvement was not due to nasonex

Thank you for clarifying.

Seems like retigabine is yielding less than impressive results thus far....Hope aut00063 doesn't follow suit.

It is a mixed bag. Mpt is cured after two months+, Bogdan has had good success, Viking had to stop, Christian78 has had many side effects so has elected not to increase his dosage at this time, SoulStation is in his first three weeks, Johno are Hengist are in their first two weeks. It's really too soon to say. Personally I feel there are a number of mitigating factors, but one thing that is clear from the user experiences is that some effect on tinnitus severity, loudness, or quality is perceived.

We have a good variety of users trying it out now. Hengist has had symptoms less than two months, Mpt started in January of this year. Christian78 started one year ago. Bogdan, SoulStation, and Johno are all 2 years+. We have a tendency to look askance at the whole acute vs. chronic thing on this thread, but that doesn't mean time since onset has no impact.

@dan Just a quick correction. Max dosage per the makers of retigabine is 1200mg/day. They say there's no further benefits after that so it's not worth the side effects, though they were testing it for epilepsy, not tinnitus. 1200mg is 3x400mg pills. Mpt was on a max dosage of 900mg per day (3x300mg) for most of July and August. He's only recently started reducing the dosage.

 

[Christian78]

Of course we are not scientists but since we would like to see your problem go away we have an urge to tell what we see is a cause of it and how it can be changed positively. I would not play around with dosages as they suggested but I would consider returning benzodiazepine dosage and uptake to where it was a short time before you completely stopped using them for a short duration, a day or two. Is it a test? Yes, but is is harmful? No, it is not as you have been previously on those things. Your spikes might go away on their own if you provide stable situation for a few weeks or months, benzodiazepine withdrawal tinnitus often lasts only a few weeks. I do not think that the medicine has stopped working because you developed resistance as that happens over much longer periods of time than a month or even half a year. Is it possible? Yes but that would mean that your body is just completely weird and that is not something that I would assume as the most likely cause. Among the things that I am most concerned with retigabine is blindness and skin discoloration which they did not clarify are they permanent or not, this drug is so rare in usage because of it's very frequent sideeffects, the drug dropping in effectiveness is not nearly as problematic as those NEW possible problems. A member that used some other drugs was talking about how he now has new neurological problems because of those. That is much more problematic than taking a drug and having no effect at all. Other possible explanatoins could be that you are eating some fruit that is decreasing the active quantity of the drug in your metabolism or that you use some toothpaste with ototoxic or neurotoxic substances which actually a lot of toothpastes have, any change related to something you put in your body in last 2-3 weeks can affect your tinnitus. Especially if you have any neck and jaw problems that are getting worse.



Can you tell me what frequency was your tinnitus? Most usual is around 7khz, there are videos with full human hearing range on youtube.

Valium had half life 200 hours, so it it takes 8 days to notice any difference in lower dosage, so to say now i have it quite much in blood.

My tinnitus is above 15 khz one note, other 12 800, one on 8600 and one is running around.

 

[Zimichael]

Ha, ha...So once again I am pasting in that @benryu quote I used a while back:

Wow, I have been off this thread for a few days and it's like war here. *__*

Geez Louise...it's getting wild out there, or was. And of course I am going to throw a few cents in...And I hope to be impossibly brief. (Not going to happen!)

~ Yeah, we need to respect what everyone is going through. Both trialees, and those joining this journey...offering ideas, help, advice, and yes even 'probing questions' - as those probing questions are often places where "un-clarity" lurks, and mistakes can be made. We are all (presumably) T folks here, and there is a vested interest in finding solutions, a cure, whatever... and sharing information to do just that is the primary function of this website and forum IMHO. With something as "unknown" as Retigabine for off label use on T and H, even more so.

~ The experts. The doctors. The 'white coats'. Big Pharma. The researchers. And so on...They are the ones supplying us with all the background information and the drugs and the "effects". And in short, I am bloody impressed with the amount and intricacy of detail that has been accumulated for a drug like Retigabine...from lots of sources. Not just Big Pharma GSK. I mean, can you imagine this amount of detail on the nuero-genetic-physiological level just a few decades ago???!!! It's mind boggling. Especially when you compare it to: "Well Grieve, in the authoritative Herbal Compendium (from centuries ago) says that Comfrey Root is good for....xyz" And yes, I have absolutely been in that place of 'believing' that old herbal remedies must be better because they were natural, or used over long periods of time, etc., etc. I was Mr. Natural. I hated Big Pharma...but over 20 years I have come to see that the kind of research that has gone into something like Retigabine is just INCREDIBLE in comparison. It's basically "incomparable"!
And no, or 'yes'...I do not want to get into a "Natural v. Pharma" debate. My point is: Information/Knowledge is Power - and hasn't some famous dude said that???

~ So the above "experts" v. us "non experts", poring over this stuff, etc., etc. and educating ourselves in the process. Do not underestimate the power of that and the power of what we are all doing right here, right now, on this thread (and others). This is as equivalent in my eyes and on the same level. In some ways more so, as it is "real". And through this probing, and questioning, and back-and-forth, stuff comes to light. Progression takes place. And that is good. All 53 goddarn pages of it!!!

~ Lastly, yeah honest. Ha ha... I'm going to use myself as an example here as I know me best. And I am NOT blowing my own trumpet here, just stating facts...
As a patient, who had hardly a clue what a doctor was for until age 43 (I had fantastic health), when I got mysteriously ill I wanted my life back, desperately, especially as time marched on for years. In the end 20 years, with only vague diagnoses, and 5,000 whatever different tests, and docs, and wooo-woos, and experts, and theories, and ideas, and failures...Through that process, the only constant was me. I realized I had to educate myself and be my own "expert". And I did.
I am no doctor, and know zero about most medical things, but I can assure you, that I know more about esoteric weird gut problems than most normal, non top of the line, gastroenterologists. Period.
On tinnitus and hyperacusis...(Ahh, close to home at last!)...I can assure you, I know more than just about any audiologist, GP and maybe ENT, about how the clock ticks on this. Especially the more recent stuff we all almost take for granted here. Period.....If not, how come my doc, whose whole practice is 'famous' for treating weird, undiagnosable, goofy illnesses that the rest of the medical profession have throw their hands up on, is following my lead on all this tinnitus stuff??? He knows I know this stuff from a whole other level and experience. And of course he trusts me to not be an idiot.

OK, there you go...On Retigabine and T, we are bloody well as valuable in our experience and debate and thrashing around of all this as all the docs, and other 'experts' are! We are doing it. We have a huge vested interest in it. I for one think it is just DARN AWESOME...

And let the debate, and the questions, and the testers continue...respectfully. Please.

Thanks to all of you. "Carry on"... as the old Brit custom entreats, Zimichael

 

[Christian78]

Its called taking matters into your own hands when the support that everyone here was seeking from a Doctor got "live with it" in every language. This is clearly a group effort deciding to do something about it instead of waiting. I respect you and everyone else who is volunteering themselves and spending the money. Advice is coming from people who want to help you and help each other. No one is claiming to be a neurologist but are likely offering advice from experience or a simple opinion. Don't forget we all under stand each others suffering here with T. And remember, Doctors practice medicine on you as a patient and you are to remain patient while they practice. Keep that in mind the next time your Doc prescribes you something with many side effects.

It is been called taking a matter in your hands and playing super neurologists. To give advice is ok, to give support is ok, but to start playing doctor while having no responsibility, and claiming you done this should not or you done that you should not. Well no Thank You. People often assume that here sits one dumb person with barely 80 iq (not 137) and he is lost, and does not know what medicine he takes, when and how. Peoples help is different, it is help not pushy orderly help trying to make feel guilty for something that is not your fault.

here it is..."You were tapering off benzodiazepines recently. Return to your normal dosage ..." I did tapper 1 mg valium that stay in blood 8 days so what is difference if i have 43 mg of 41 mg in blood??? And then I should listen to it? and behave as told but no one thinks I can take care of myself. PowerxEGO on cube.

Here is other doctor: "you should be slowly tapering up the dosage to the effective 900 mg per day", so now i got prescribe to get to 900mg??? and i wonder how many of you have possibility to have 50mg pills because i did not had that possibility, and i suppose 80% will not have to get not 50 but any.

So yes, i said please let it go, if i could delete my post I would, because people here don't deserve to get to know nothing from people who try drugs, as on the end one gets punished for opening himself.

And side effect is not that I complain on, I complained that medicine does not function, side effects are much lower as effective too.

Life goes on, I suppose I just should not reply on tread by explaining myself. I dont need to explain myself. Everyone can think whatever he wants, this tread is so long no one know who wrote and was it me someone elsle, all info is mixed. we will see will it be better of worse and worse.

 

[locoyeti]

@Christian78 , I was only trying to help, sorry if I sounded too authoritative, I just really want to see you feel better. I am not a neurologist, please weight my advice as just one set of suggestions among many others on this thread, and come to your own conclusions. We are all hoping that you improve on this drug

Also, to clear up some confusion on dosages we have been having, here is a reprint of benryu's recommendation. I think when I take the drug I will go up to 900mg, because that is the max dosage that Mpt used.

https://www.tinnitustalk.com/thread...-—-general-discussion.5074/page-18#post-58393

 

[Codaz]

We need more information on how dosage of anti epyleptic drugs are given. The dosage differs for each person and, such strong medication should be supervised. I've read everywhere that there is too much loose action on Clonazepam for example. Some doctors say just quit cold turkey, some say taper off very slowly. Nobody really seems to know, people get bad instructions. That's why I never started anti depressants, not even in the first months of my T when it was sick loud at sleep. The taper up and down instructions where absent. I just got drugs for 100 days which are highly addictive. Ridiculous. Who knows what the long term effects of Retigabine are? The body gets used to it, that's why you need higher dosages to get the same effect. And I'm doubting still how long you have to take this. Until T is gone, remain every month? Even AM-101 or AM-102 have effects nobody knows. What is the half time of these drugs? Hours, days? Also depends on each person. Users here may be heavier than another, smoking or not, drinking caffeine, or not. You cannot say hey it is THE solution. It's promising, yes, but we need much more information.

I started doing Vitamin B12 this weekend and yet another decrease in volume. Made me very tired. Like if my body was screaming for energy It's from a paper from 2013, try it. Here is the paper (http://www.ncbi.nlm.nih.gov/pubmed/23909117) A can of these mini pills costs next to nothing at your local vitamin store. I'm sick and tired of the ENT's saying that nothing will help, as magnesium does help, and that is been researched over 20 years ago. It might not be permanent, , but it does help in the short term. So many of this research is not significant, but can work. But try it, especially the supplements which can't do any harm (watch out for overdose though).

 

[Robb]

We need more information on how dosage of anti epyleptic drugs are given. The dosage differs for each person and, such strong medication should be supervised. I've read everywhere that there is too much loose action on Clonazepam for example. Some doctors say just quit cold turkey, some say taper off very slowly. Nobody really seems to know, people get bad instructions. That's why I never started anti depressants, not even in the first months of my T when it was sick loud at sleep. The taper up and down instructions where absent. I just got drugs for 100 days which are highly addictive. Ridiculous. Who knows what the long term effects of Retigabine are? The body gets used to it, that's why you need higher dosages to get the same effect. And I'm doubting still how long you have to take this. Until T is gone, remain every month? Even AM-101 or AM-102 have effects nobody knows. What is the half time of these drugs? Hours, days? Also depends on each person. Users here may be heavier than another, smoking or not, drinking caffeine, or not. You cannot say hey it is THE solution. It's promising, yes, but we need much more information.

I started doing Vitamin B12 this weekend and yet another decrease in volume. Made me very tired. Like if my body was screaming for energy It's from a paper from 2013, try it. Here is the paper (http://www.ncbi.nlm.nih.gov/pubmed/23909117) A can of these mini pills costs next to nothing at your local vitamin store. I'm sick and tired of the ENT's saying that nothing will help, as magnesium does help, and that is been researched over 20 years ago. It might not be permanent, , but it does help in the short term. So many of this research is not significant, but can work. But try it, especially the supplements which can't do any harm (watch out for overdose though).

Hi Codaz,

I think very similar to you. Many good observations. Keep posting your ideas

best robb

 

[Codaz]

The shitty thing is T is already "on". Every loud motorcycle or else makes me freaking scared for it to go louder in stead of better. I wish so hard for the life I had back 5 months ago. Chronic headaches, but no T.
We cannot protect against every sound. Acoustic trauma's like construction sites, loud truck horns, someone blowing on a whistle do occur. I see that people even play loud gigs or attend concerts with T. Unbelievable.

 

[Eric Fridley]

i seen my gp today he is making goto a ENT since i have not been there yet he put left ear ringing ear pain TMJ pain on left side so ill go from there he prescribed me Lorazepam gonna see what ent think about my jaw after another 2 month i will go back to my GP if i still have tinnitus and ask him for Retigabine cause it will be my final chance of at least helping my tinnitus or curing it i just want this to end idk if i can live with this

 

[Rube]

has it been determined or even speculated if retigabine is successful as it seems for mpt, will T come back once stopped or will a person have to take retigabine all the time?

 

[rtwombly]

has it been determined or even speculated if retigabine is successful as it seems for mpt, will T come back once stopped or will a person have to take retigabine all the time?

Theoretically, the cure could be permanent. Mpt is currently reducing his dosage gradually to see if symptoms return. You can see on the User Experience thread that as of Thursday he was on 800mg, down from his original 900mg. If he is able to come off completely, it lends credence to the recovery theory, but it is possible that some people might require continued dosing. Search for benryu's posts on this thread if you want the technical explanation.

 

[111]

Just to change this topic a little bit, my own view is that i have read some anecdotal evidence to suggest that this style of medication may actually assist ( see how i said may and not will ) some people.

As it is so new to the market, and not even released in some countries ( it isnt even here in Aus yet ) we have no history whatsoever to go on really, ( apart from epilepsy test history results ) we only have what is happening here and now which is such a short time span.

I have read links on here, got my own information ( some i have shared on here ) and there might just be some benefit gained with this style of medication, after all, this new style of medication is what aut063 is based upon right ( yet to be proven of course ) ?

The TGA Aus document Michaelz refers to is one document i posted way back, and it states the below in it,

In vitro data suggested that retigabine may interact with KCNQ channels in the inner ear, but this was not addressed in in vivo animal studies.

If i do get this stuff i will be keeping very low key and just work with my Dr during the time taking it.

 

[lapidus]

I only see our amateur Retigabine trial as a proof of concept that Autifony is on the right track. I actually don't expect anyone to be cured/treated by this. Since Autifony is concentrated to a target and this is a "shotgun approach", I think some people might get lucky with Retigabine, like mpt for example. But just that something happens to the T proves that the science being done on the potassium channels is on the right track.

 

[Zimichael]

A "Head's Up" for anyone in USA ordering Potiga from Canada...and Online Pharmacies

OK, so it's been two weeks since I ordered and I'm getting testy. I phoned Canada Pharmacy Online and said: "Hey you've got my money where's my drugs???!!!"

Respondee ~ "Oh, it takes 16 to 18 business days to get your medication. That is standard for all online pharmacies!"

My brain whirrs. Gears engage ~ "Huh? That's....Uh, 3 x 5 = 15...Hey that's over 3 normal, human weeks!"

Respondee ~ "That's correct Sir."

Brain accesses past. They always say 'Sir' when skiving around a BS point! ~ "But I of course asked that exact question when I ordered. Like how long would it take, etc. Obvious concern right?!"

Respondee ~ "We always say that time frame I gave you...Sir."

Desired response, suppressed due to upbringing ~ "Well, that did not happen. I was blithely told to not worry about it as it generally takes a week to 10 days at most."

Respondee ~ "Well that's not correct Sir."

Desired response again suppressed ~ "Well bully for that. So I could be waiting another week or 10 days STILL even though I paid $10 (UK 6 Pounds at current rate) in 'shipping' that for sure buys first class Royal Mail last time I was in foggy bottom!"

Respondee ~ "I don't know...Sir."

Reply skips out before I can stop it ~ "Sheise!!!...Well maybe I would have just paid more and got it locally if that had been made clear on purchase...AND I was only informed after the fact that it was coming from the UK and not Canada, when I called to follow up later!"

Respondee ~ "All our medications are shipped from abroad Sir, as they are for other online pharmacies."

Click, click, click...China??? India??? Zimbabwe!!!??? Aaaaarghh... ~ "OK I'm done here." With admirable effort and self control ~ "Thank you for this information."

Well SHIT!!! And yeah I called the shipping pharmacy in UK and a very polite 'Indian gentleman' replied (which of course means I was talking to someone in UK and not a 're-route' to Mumbai) ~ "We have two shipping options depending on vendor instructions...First Class, or Economy." Economy can be sea mail!!!...No brownie points for guessing which one Canada Pharmacy is using.

So, be warned. Do not get your emergency supply of meds via this avenue. If on Potiga c/o online, get your next batch way before you get close to running out.

Twiddle, twiddle, twiddle... Zimichael

 

[Christian78]

I only see our amateur Retigabine trial as a proof of concept that Autifony is on the right track. I actually don't expect anyone to be cured/treated by this. Since Autifony is concentrated to a target and this is a "shotgun approach", I think some people might get lucky with Retigabine, like mpt for example. But just that something happens to the T proves that the science being done on the potassium channels is on the right track.

I hope so , they are just dragging it along, so much that is starts to look suspicious...

 

[Christian78]

has it been determined or even speculated if retigabine is successful as it seems for mpt, will T come back once stopped or will a person have to take retigabine all the time?

Well the answer on it is to bee seen, there ate apparently many diferent forms of tinnitus, some treatable, some a with retigabine, some with neuro operation by Swiss doctor, and some totally resistant. How why, well it is just i think pure luck.