Retigabine (Trobalt, Potiga) — General Discussion

[LetyO]

I took neurotonin and klonopin. It didn't lower my T but I found I tolerated it better. I did this based on a study that I read regarding the two medications. Just google Neurotonin and Tinnitus. There are also a number of articles regarding the use of Xanax to reduce tinnitus. These all must be taken over several weeks-months to be effective. I just picked up my Rx of Trobalt and Took my first 50 mg pill. Once I am able to tolerate the higher doses I will try the combination with gabapentin. I also cannot tolerate this incessant noise much longer. I want to stop it so I can get on with my life. The intensity/quality changes every day making it hard/impossible to habituate to. I would rate mine 6-8/10. I will keep all of you updated.

 

[LetyO]

@jeannie. The muscle relaxer that you took has a different mechanism of action in the central nervous system. It is central alpha2-adrenergic agonist which may have just aggravated your T. I would just use Neurotonin with a benzo. If you think you are having a bad reaction to the Neurotonin stop taking it. It has a short half life and the majority will be out of your system within a few days. It is excreted mainly via kidneys so drink a lot of water. We are all taking chances mixing these medications. In reality no one understands the impact on the CNS. The number of receptors and various mechanisms ensure that there is no simple fix. Hopefully we can find a combination of meds hat will have the desirable effect. I pray that we all find some relief

 

[OnceUponaTime]

@jeannie Im sorry you have a spike. I think you are brave by trying different things to alleviate your condition. Hopefully the spike will fade away after the effect of the pills. The day will come when we will all see the big banner at the top of TT page and a video of @Markku jumping up and down..lol.. " THEY FOUND A CURE FOR US ALL " Have faith...

 

[jeannie]

RaZaH, I took 100 mg of neurotin, and 2 mg. zaneflex which is a muscle relaxer, only mixed them 2 days and one time as im sensitive to medications... but yesterday was a halfway decent day... T still there but it wasnt intrusive but a mild tinkling of glasses and about a 4 today is a different story....... very intrusive for awhile...i dont know if its the meds or just my tinnitus as its all over the place... but the 10 /10 is new...that i had but i have noticed for about a month it seems a little louder than usual ...on normal days......... and LetyO ... I do take 0.5 mg of xanax at bedtime for anxiety and panic attacks... so maybe i will try again tomorrow.. also thank you Onceponaime, that would be so wonderful!!!!! i pray there comes a day we will see that!!!

 

[preslys]

My plan was to go a few months - 4 on trobalt , but I might try a few days of trobalt and then the combo.
@preslys can you please tell us for how long you took what dosage before you did the combination?

when I was taking my third box I took two pills perday and when I completed it I started taking neurotin one pill of 600 mg perday,the result was good but not like trobalt So I decided to stop neurotin for 15 days I ordered the fourth box ,so I took trobalt and neurotin togother and this combination was like a knockout to my T

 

[gintas]

when I was taking my third box I took two pills perday and when I completed it I started taking neurotin one pill of 600 mg perday,the result was good but not like trobalt So I decided to stop neurotin for 15 days I ordered the fourth box ,so I took trobalt and neurotin togother and this combination was like a knockout to my T

View attachment 8072

great ! but you was taking just 200mgx2 per day Trobalt ?

@preslys and @papu @locoyeti can you share your experiences for how long and in what doses do you used medications? Thanks !it is really important for all of us that using Trobalt

 

[locoyeti]

great ! but you was taking just 200mgx2 per day Trobalt ?

@preslys and @papu @locoyeti can you share your experiences for how long and in what doses do you used medications? Thanks !it is really important for all of us that using Trobalt

use the search function and find my posts in this thread and the user experiences thread.

 

[locoyeti]

also wanted to add that i have been on the ketogenic diet for the last 4 months, and i am quite sure that it is helping. the literature on that is quite vast, i'd recommend looking into it. it is a diet that is recommended for epilepsy.

 

[LetyO]

I just started Potiga yesterday. Did not feel different at 50 mg so increased to 100 mg. I took my morning dose at 5 am on an empty stomach. Still did not feel different. No change in my T. How quickly should I taper up? Do most users not have a change in their T in the beginning? I have read the user thread and the reports on progress are a little confusing. I wish each user had a condensed version of their experience on one page which would make it easier to follow. Sorry for being so dense. I'm just tired, stressed, feeling sorry for myself, etc. I was suicidal a couple of weeks ago but reading all that has been posted has given me some hope. Today is not a good day. Loud T for past 2 days and I don't know how I'm going to get through this day. I wish I could get the high/tiredness so I could just go back to sleep

 

[zoid]

I just started Potiga yesterday. Did not feel different at 50 mg so increased to 100 mg. I took my morning dose at 5 am on an empty stomach. Still did not feel different. No change in my T. How quickly should I taper up? Do most users not have a change in their T in the beginning? I have read the user thread and the reports on progress are a little confusing. I wish each user had a condensed version of their experience on one page which would make it easier to follow. Sorry for being so dense. I'm just tired, stressed, feeling sorry for myself, etc. I was suicidal a couple of weeks ago but reading all that has been posted has given me some hope. Today is not a good day. Loud T for past 2 days and I don't know how I'm going to get through this day. I wish I could get the high/tiredness so I could just go back to sleep

I am on Trobalt for a couple of weeks now. Started with 3x50 mg. Next week 3x100, and so on. Did'nt experience very much of a difference before 200mg. I don't think it is wise to taper up very quickly but i'm not an expert.

 

[amandine]

I have read the user thread and the reports on progress are a little confusing. I wish each user had a condensed version of their experience on one page which would make it easier to follow. Sorry for being so dense. I'm just tired, stressed, feeling sorry for myself, etc. I was suicidal a couple of weeks ago but reading all that has been posted has given me some hope. Today is not a good day. Loud T for past 2 days and I don't know how I'm going to get through this day. I wish I could get the high/tiredness so I could just go back to sleep

I put out a separate post a while back asking for a condensed users experience but was overwhelmingly ignored....I agree with you - it is a bit of a mess...............

 

[LetyO]

@zoid. I will take your advice and try to taper slowly. Thank you for your advice. I am very impatient and just want a little respite.

 

[Champ]

also wanted to add that i have been on the ketogenic diet for the last 4 months, and i am quite sure that it is helping. the literature on that is quite vast, i'd recommend looking into it. it is a diet that is recommended for epilepsy.

I've had a similar experience... when I eat carbs my ability to perceive tinnitus goes way up, along with the blood sugar at a fairly even level.

Being on a ketogenic diet, I still have it, audibly, but my brain doesn't perceive it nearly as sharply.

 

[RaZaH]

It seems I can only get 100mg tablets ...I am going to be high as a kite .

 

[valeri]

also wanted to add that i have been on the ketogenic diet for the last 4 months, and i am quite sure that it is helping. the literature on that is quite vast, i'd recommend looking into it. it is a diet that is recommended for epilepsy.

So how much of the carbs you would have daily and in what form?
Thanks!

 

[amandine]

So how much of the carbs you would have daily and in what form?

Valeri google is full with the information including recipes......... i looked it up and found loads of stuff. Hope it helps

 

[undecided]

At what dosage were you using trobalt (retigabene) when you mixed it with the other drugs please and how long were you on the trobalt for and were you on a consistent dose? thanks

I've posted numerous times on the user experiences thread.
Anything above 200mg had a positive but temporary effect in my case.
The longest I've been consistently on RTG is about a month. At the end of that period I had a tiny permanent improvement which I consider insignificant.

The mixing with other drugs was out of personal curiosity and recreational purposes.
Trobalt works fine on its own for t.

 

[amandine]

The mixing with other drugs was out of personal curiosity and recreational purposes.
Trobalt works fine on its own for t.

Thank you for posting.

 

[smallfry]

Hi all, it's my first post so it's nice to meet all of you. I am in the UK and recently have had my T increase to new levels, and needles to say it's pretty distressing. I've habituated before so I know I am in the panic phase at the moment, however the anecdotal evidence of Retigabine helping acute/post acute sufferers is tantalising.

Basically anyone in the UK know how to get hold of retigabine? Of course I am not expecting anyone to tell me over an un secure Internet forum. However if anyone has a friend/'swim' they would be willing to put me in contact with I would be very grateful.

Yours hopefully

Tom

 

[OnceUponaTime]

@RaZaH Are you going to continue taking RTG as needed?? Meaning like when you take ibuprofen for pain?? Not clear on how RTG helps you. Can you explain.

 

[RaZaH]

Hi @OnceUponaTime I only did the aspirin approach for a very short while. I am waiting on my next prescription to go through , might go full in this time. One small 50 mg tablet seemed to stop my T pretty much but its been a while ,I am super extra sensitive to drugs , I fall asleep like a baby from one ibuprofen... will report on my second round.

 

[OnceUponaTime]

Hi @OnceUponaTime I only did the aspirin approach for a very short while. I am waiting on my next prescription to go through , might go full in this time. One small 50 mg tablet seemed to stop my T pretty much but its been a while ,I am super extra sensitive to drugs , I fall asleep like a baby from one ibuprofen... will report on my second round.

Oh ok, thank you. I hope it goes well for you. You are probably the only one getting any relief from a single 50mg pill! That is great. No side effects at all??? I have some 50mgs here, wondering if I should try just one...

 

[LetyO]

Hi @OnceUponaTime. I took 50 mg - no side effects and no effect on my T (at just one dose). So I raised it to 100mg PO TID. Still no effect on my T. It's my third day on this dose and for the first time this afternoon I felt a little tired 20 minutes after taking this pill (only lasted about 20-30 minutes then I was back to normal). I think the concentration gradually builds up with time. Eventhough the half life is about 7 hours you still have half the dose in your system when you take the next dose, then 1/4 plus 1/2 when you take the third dose and so on. If you are sensitive to medications as RaZaH then maybe it will have the same effect but it will be transient and I would not mix with other medications. Maybe talk to your Dr. before you start.

 

[LetyO]

Actually I have had a mild headache for 2 days but this has happened before I started taking the Potiga. No reason. I have them for 2-3 days then they usually go away on their own. My appetite has improved since I started though which may explain some of the GI issues.

 

[Martin69]

I find everyone so brave here.

My friend is in Spain until Saturday and asking me if he should buy Trobalt for me.
I have already some 100 mg pills here from him.
I really don't know. My T is loud and sharp, every day is a challenge.

But somehow I fear the side effects. Dealing with T is difficult enough. Cannot risk eye floaters and all the other things.

Holy sh... What shall I do?
At least there is no way I take 300 or 400 mg TID.

 

[mohamad-m]

It seems like this drug is effective , how can I get it ? I don't think there's that in turkey I already asked a pharmacy

 

[papu]

Cannot risk eye floaters and all the other things.

Funny thing I had them before trobalt I just did not know what they were called. They are formed out the liquid or vitreous substance the eye ball and are a normal ocurrence with age. They can become bothersome if they get stuck behind the retina and for that you need to have retinal detachment. I have not heard of retinal detachment as an unwanted effect with trobalt

I am 300 mg three times a day an doing ok so far (try not to have pill on an empty stomach, it's tempting the effects on the tinnitus are incredible but also the weird side effects lost time, stuttering, confusion and what I call rhythmic firing or the sensation that your neurons are firing at the same time rhythmically with your heart beat). That stuff only happens on higher doses (when I crossed the 600 mg per day), it's temporary up to.40.minutes and only if I take it on a empty stomach.

 

[LetyO]

Are you still taking neurotonin with trobalt? Did you notice any significant improvement? Will you be posting on user experiences? Thank you!

 

[valeri]

I find everyone so brave here.

My friend is in Spain until Saturday and asking me if he should buy Trobalt for me.
I have already some 100 mg pills here from him.
I really don't know. My T is loud and sharp, every day is a challenge.

But somehow I fear the side effects. Dealing with T is difficult enough. Cannot risk eye floaters and all the other things.

Holy sh... What shall I do?
At least there is no way I take 300 or 400 mg TID.

Martin no need to be so concerned.
So far no one died or had any permanent damage.
Trying a small dose will not do you any harm (of course I'm not a doctor and don't know your medical history), just from what's been shown here on this forum you should be fine.
I tried 300mg at once and it did not effect me in any bad way, bloody hissing did stop for awhile

Maybe try few of the pills you already have before you spend more money.

 

[Adriano_ Moreno]

It is the end... I don't know, what i can do now... I take now RtgRt 300 3xday and Neurontin 300 mg 2x day... I hope my tinnitus dissapeard but they are... I hope that autifony help us, but now I am very sad and tired everythings... I can't live with this... It is tragedy for me... Bye bye...