Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

If you were taking benzodiazapines and are tapering off them than that is causing tinnitus spikes, those dugs can cause tinnitus by themselves.

If i were tapering of benzos yes, but i dont. It is just speculation. If i were, maybe it would be like that, if you were this or that maybe it would be this or that. I will try to remain on same dosage, and see will continue to progressively get worse.

I have a feeling that my side effect that made me high or groggy were ones who helped me ignore tinnitus too, and now when there are no side effects i can hear t in full, MAYBE I SAY lets not speculate.

 

[Jon B]

Christian, did you get Trobalt from your GP(husläkare) or did you have to see a specialist? Was it hard to get? Also, did you get it subsidized or do you have to pay the full amount yourself?

I just heard about this drug, and I'm going to talk to my doctors as soon as I can, but like you said.. I worry that they don't know about it or aren't really interested in learning about it. When I get it, I'm quite happy to be a guinea pig and post my results here we are all in this together.

 

[65vwbus]

I'm not a doctor and it's probably already been mentioned in the 50+ pages of this thread, but I just want to say to anyone thinking of experimenting- with these types of drugs you have to be so careful, start low and if you need to increase do it very very slow, they can take weeks to start to have any effect. Please don't try to bump doses up fast immediately to get more of an effect, they don't work like that.

I was on another epilepsy drug months ago, but due to a prescription error was increasing the dose much too fast, every couple of days instead of weeks.
I had horrific side effects, electric shocks in my head, continuous vomiting, half my body went floppy, I couldn't taste food and drink, tremors and I just couldn't think, it was like my brain was switched off.
Months later after stopping the drug I'm left with a constant tremor, and I have to take yet another drug to control that.

 

[Zimichael]

However, the choice is yours and I would 100% trust your own judgment on what to do! If you decide to drop off though, I would for sure taper slowly.

Christian...I think people are trying to help not bat you around like a ping-pong ball. I feel like we are all in this together and that's what this thread is for...to indeed 'speculate' about what may, or may not be happening, be they good things or not so good things. Likewise, the 'speculation' about you tapering off makes good sense to me, as why stay on it with the potential 'time accumulated' pigmentation issues, if it is not working any more?

For my part I am 101% clear that I am/will be a "guinea pig" in this experience. I can see it no other way. I will take the stuff carefully, and in every respect try and keep all other variables stable in my life because I feel like it's a "trial". And I am getting really impatient waiting for my Potiga I can assure you, as then I can be more directly in your shoes. I've had a darn prescription since mid July!

Like I say though, it's YOUR choice for sure. I think it's really great you have given it a go and got this far!

Best, Zimichael

 

[Rube]

@Zimichael - when are planning on starting the retigabine, is it backordered or just difficult to find in cali?
will you follow the dose benryu posted or ramp up even slower?

Rube

 

[SoulStation]

@Christian78 ...hold strong . you will make it through this. We have seen some light.

 

[SoulStation]

If i were tapering of benzos yes, but i dont. It is just speculation. If i were, maybe it would be like that, if you were this or that maybe it would be this or that. I will try to remain on same dosage, and see will continue to progressively get worse.

I have a feeling that my side effect that made me high or groggy were ones who helped me ignore tinnitus too, and now when there are no side effects i can hear t in full, MAYBE I SAY lets not speculate.

Also one thing I've been doing is trolling epilepsy forums for more peoples relations to this drug. It may help you gain an insight to the possibility of tolerance.

 

[Rube]

hi @SoulStation how are you doing with the retigabine? i know u mentioned the other day that you had some improvement.

 

[SoulStation]

I'm OK today its not as good as Friday night but I played a 4 hour loud gig last night and it definitely fatigued my ears.

 

[william2]

it is a long thread with vital info scattered,
so why not pin a notice at the beginning
with dosage info
and studies to show doctors
plus link to progress reports

 

[Zimichael]

@Zimichael - when are planning on starting the retigabine, is it backordered or just difficult to find in cali?
will you follow the dose benryu posted or ramp up even slower?

Rube

@Rube...I intend to start the day the bleedin' stuff gets here! It's now coming from UK c/o a Canadian pharmacy...Feels like I have been twiddling thumbs forever, but that's because I got such a run around when first tried to get it in late July locally. Indeed I could but had a run in with CVS as they would only get it if I bought the whole darn mega box as the pharmacist knew no-one else was ever going to want "the rest". Too much $$$ for something I could potentially puke on and punk out of after a couple of pills! Thus the Canada route, etc., etc....Much cheaper though.

See my prior posts re my plan of approach and reasons (have fun with that!). Briefly though, slow and careful, but very, very "reaction dependent". I know my body + meds pretty darn well (after lots of experience unfortunately) and when to freak out and when not to freak out...I hope!
Z.

 

[Rube]

@Rube...I intend to start the day the bleedin' stuff gets here! It's now coming from UK c/o a Canadian pharmacy...Feels like I have been twiddling thumbs forever, but that's because I got such a run around when first tried to get it in late July locally. Indeed I could but had a run in with CVS as they would only get it if I bought the whole darn mega box as the pharmacist knew no-one else was ever going to want "the rest". Too much $$$ for something I could potentially puke on and punk out of after a couple of pills! Thus the Canada route, etc., etc....Much cheaper though.

See my prior posts re my plan of approach and reasons (have fun with that!). Briefly though, slow and careful, but very, very "reaction dependent". I know my body + meds pretty darn well (after lots of experience unfortunately) and when to freak out and when not to freak out...I hope!
Z.

@Zimichael - will you be completely off all other meds when u start retigabine?

 

[Hengist]

If i were tapering of benzos yes, but i dont. It is just speculation. If i were, maybe it would be like that, if you were this or that maybe it would be this or that. I will try to remain on same dosage, and see will continue to progressively get worse.

I have a feeling that my side effect that made me high or groggy were ones who helped me ignore tinnitus too, and now when there are no side effects i can hear t in full, MAYBE I SAY lets not speculate.

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.

 

[rtwombly]

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.

Christian78 did not start taking Trobalt for our benefit. He was trying to find something effective in his own case. He's justified in feeling frustrated and comments like this are only likely to discourage him from sharing his story with us.

Christian, I have followed your posts since day one with Trobalt. You have clearly suffered both with your tinnitus and from the side effects. You have our gratitude for keeping us all informed of your progress and the difficulties you have faced. I hope you will have better results and that you will continue to let us know your condition. Please take our interest in you as that of concerned friends. Yes we all want to get a report on this drug in the hope that we will benefit, but we are also interested in your well being and continue to hope that you will be rewarded for your efforts.

 

[dan]

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.

@Hengist ,I think you owe Christian an apology.

 

[Hengist]

Christian78 did not start taking Trobalt for our benefit. He was trying to find something effective in his own case. He's justified in feeling frustrated and comments like this are only likely to discourage him from sharing his story with us.

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.

@Hengist ,I think you owe Christian an apology.

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 am not guinea pig. lets try this or lets try that. lets dissect me me to see what is wrong. or better give me bigger or lover dosage. you are not concerned how i will react on it, you are who know where. when you try this medicine and get into same condition as me then well ok, we do experiment on you. i wrote about how volatile is this medicine, there was even chart. try this, try that

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.

 

[111]

If people are gathering information to assist them in getting access to this stuff, thought the two below links might be of interest ( along with numerous others on this thread somewhere ).

Dont know if they have been put on here previously as this thing is just way too long to check these days, maybe there could be a seperate page put up with all links from this post put on there, and added to, at least that way we dont keep getting things sent in over and over, and also it is a one page to go to for any info people might be looking for to decide if they want to try to get access to this stuff. info like this should all be in one place so people dont have to wade through pages and pages just looking for relevant information.

http://www.ncbi.nlm.nih.gov/pubmed/?term=retigabine+tinnitus

http://www.ncbi.nlm.nih.gov/pubmed/20935082

 

[FritzEuts]

Autifony is under patent, any attempt to duplicate will result in a ban.
On another note, tinnitus is like solar panels:
Shade Can Damage Solar Panels
Individual solar panel cells are very sensitive and do not like being constantly switched on and off. When some cells in the panel are not working the other cells work harder to try to compensate. As a result the solar cells that are not in shade have a tendency to overheat and burn out. There is a solution to this and that is to buy solar panels that are fitted with bypass diodes. However, even then shade is not good for solar panels, so should be avoided if possible.
ya shade can easily damage these solar kits..Even I have got similar information from other reliable source..

Thanks for sharing out your views guys to solve out the proble,,

 

[Telis]

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

 

[RichL]

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

I'm pretty sure it's only @Christian78 who doesn't seem to be having positive results from retigabine and going by his posts he hasn't been following the proper dosage so I think it's a bit too early to pass judgment!

Rich

 

[Nick the Swede]

To be honest, i don´t think anybody is taking Retigabine with the purpose to help others. Everybody are closest to themself.
I think that we all should be glad just to be able to read about their struggle.

 

[Telis]

How is he not following proper dosage ?

I'm pretty sure it's only @Christian78 who doesn't seem to be having positive results from retigabine and going by his posts he hasn't been following the proper dosage so I think it's a bit too early to pass judgment!

Rich

 

[RichL]

How is he not following proper dosage ?

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

 

[Telis]

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

Oh the back yard scientists/doctors (fellow posters in the know) here?

Yeah he better follow that protocol.

 

[RichL]

Oh the back yard scientists/doctors (fellow posters in the know) here?

Yeah he better follow that protocol.

The posters in the know that I have referred to have supplied the doses from the drug company that released it!
I simply referred to our fellow posters because they were the ones that bothered to research the correct doses!

So the smart ass reply wasn't really called for!

Rich

 

[Telis]

Well I guess shame on Christian and his doctor for not bothering to research the proper doses! They should have just come here for advise!!

The posters in the know that I have referred to have supplied the doses from the drug company that released it!
I simply referred to our fellow posters because they were the ones that bothered to research the correct doses!

So the smart ass reply wasn't really called for!

Rich

 

[RichL]

Well I guess shame on Christian and his doctor for not bothering to research the proper doses! They should have just come here for advise!!

I'm not sure I know exactly what your getting at @Telis , but if you were just kidding about this statement there is an irony here that your probably correct on, and that is I would take advice from the likes of @attheedgeofscience , @benryu , @cullenbohannon as well as a few more on here ahead of most Doctors that I have had the dishonor of meeting.

Rich

 

[dan]

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.

 

[RichL]

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.

Couldn't agree with you more!

Rich

 

[Telis]

I'm not sure I know exactly what your getting at @Telis , but if you were just kidding about this statement there is an irony here that your probably correct on, and that is I would take advice from the likes of @attheedgeofscience , @benryu , @cullenbohannon as well as a few more on here ahead of most Doctors that I have had the dishonor of meeting.

Rich

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