Retigabine (Trobalt, Potiga) — General Discussion

[linearb]

Ok I understand. But as far as I know there are no real treatments for tinnitus so if we are to use that standard then I think there are a lot of posts in the "treatments" section that would have to go as well.

edit: I just realized the description text for this subforum is "Drugs, supplements, therapies & treatments that have at least some scientific study. May not be proven for use in patients with tinnitus.", so that tempers my viewpoint to some extent.

 

[gintas]

linearb
maybe you tapered up too quickly ? for how long did you used Trobalt ? many people have benefits from it.

 

[Christian78]

He is talking about tapering up not down.....

he did taper down, so i asked how did he taper down!!!

 

[preslys]

@papu @amandine

Now I am fighting against eye floaters in my right eye. I don't know if trobalt was the cause of it .

 

[linearb]

linearb
maybe you tapered up too quickly ? for how long did you used Trobalt ? many people have benefits from it.

I didn't taper up quickly; I didn't use it for an extended period of time. Yes, some people have had benefits here without significant downsides; this does not change or invalidate my own experience.

@papu @amandine

Now I am fighting against eye floaters in my right eye. I don't know if trobalt was the cause of it .

Careful. Eye floaters are probably filtered out of consciousness by the same general thalamic machinery which is deficient in tinnitus. You're messing with some delicate stuff.

 

[amandine]

Now I am fighting against eye floaters in my right eye. I don't know if trobalt was the cause of it .

Gosh Preslys that is awful - i am so sorry to hear this!
Did that start (the floaters) as soon as you stopped taking the trobalt cold turkey? (no tapering down) or while you were taking the trobalt? How bad is it? and have you had this before in your life? Can you get this fixed at with a doctor? Is this definitely connected to the trobalt? Thank you Preslys for telling me and us about your experiences. Really kind of you and appreciated.

 

[papu]

@preslys how old are you if I may ask? Floaters are a common finding after 40 years old. I had them and did not even know or bother me until someone talk about them in the forum (before they floated happily and I did not even notice them, know I do because you tend to put more attention to them). If you are older than 40 its just collagen fibers that start forming and floating in the gel of the eye (vitreous liquid). They become bothersome when you have retinal detachment and they become lodge in, otherwise typically in most cases (not in all of them of course) they are a minor thing. if you are younger than that maybe trobalt I just don't know.

 

[valeri]

@papu @amandine

Now I am fighting against eye floaters in my right eye. I don't know if trobalt was the cause of it .

I'll take floaters any time over t

 

[Silvio Sabo]

I'll take floaters any time over t

Yes but that is if you could actually cure your T. It's a tough one to have BOTH floaters AND T.

 

[valeri]

Yes but that is if you could actually cure your T. It's a tough one to have BOTH floaters AND T.

Floaters can be treated!

 

[amandine]

Yes but that is if you could actually cure your T. It's a tough one to have BOTH floaters AND T.

Preslys cured his T. Now he has floaters that can be cured.

 

[Albertus]

Floaters only treatment is vitrectomy (FOV).

 

[LetyO]

I took 300mg of Trobalt last night within 10 minutes I had a horrible loud, hissing/buzzing sound in my head (20/10) It was almost pulsating. It went away after 5-10 min. into a more tonal sound but Im not really sure becacause I could not get out of bed. I could not even lift my arm (I have never been stoned but now I know what you all are talking about). That lasted a couple of hours. I still have that tired feeling almost 5 hours later. Has anyone had that happen to them (the increase in loudness after taking Trobalt?). I am worried about continuing.

 

[amandine]

I took 300mg of Trobalt last night within 10 minutes I had a horrible loud, hissing/buzzing sound in my head (20/10) It was almost pulsating. It went away after 5-10 min. into a more tonal sound but Im not really sure becacause I could not get out of bed. I could not even lift my arm (I have never been stoned but now I know what you all are talking about). That lasted a couple of hours. I still have that tired feeling almost 5 hours later. Has anyone had that happen to them (the increase in loudness after taking Trobalt?). I am worried about continuing.

Did everything go away back to normal afterwards apart from the tiredness? Sounds horrific! Cant tell you if this is common experience or not but someone else will see this who has taken it and let you / us know, hope you are feeling better. Was this your first time with 300mgs dose or have you taken it at that dosage before without problem?

 

[RaZaH]

@preslys You said you were "cured" with one dosage of Trobalt , does that mean one pill or one box or what ?
Thanks

 

[Bart]

I took 300mg of Trobalt last night within 10 minutes I had a horrible loud, hissing/buzzing sound in my head (20/10) It was almost pulsating. It went away after 5-10 min. into a more tonal sound but Im not really sure becacause I could not get out of bed. I could not even lift my arm (I have never been stoned but now I know what you all are talking about). That lasted a couple of hours. I still have that tired feeling almost 5 hours later. Has anyone had that happen to them (the increase in loudness after taking Trobalt?). I am worried about continuing.

In my personal opinion I would be very carefull in trying this "aspirin approach".

This drug is not something to take lightly and/or take when you feel like it, I did it a couple of times and my t became alot worse for 3-4 days after taking 200mg before I went to sleep , now 3 weeks later it has subsided but it still is louder than before , so try at your own risk.

My GP said it is dangerous and it can cause a rebound effect as in my case.

 

[amandine]

@LetyO Sorry for the above post - I can see that you have answered all my questions already in the post you made in Retigabene - users experiences
Thank you

 

[papu]

I took 300mg of Trobalt last night within 10 minutes I had a horrible loud, hissing/buzzing sound in my head (20/10) It was almost pulsating. It went away after 5-10 min. into a more tonal sound but Im not really sure becacause I could not get out of bed. I could not even lift my arm (I have never been stoned but now I know what you all are talking about). That lasted a couple of hours. I still have that tired feeling almost 5 hours later. Has anyone had that happen to them (the increase in loudness after taking Trobalt?). I am worried about continuing.

Trobalt has to be taper up slowly to a dosage within 600 and 1200 mg a day divided in three takes for optimal blood concentration and therefore have an effect in your tinnitus ( if you are one of the lucky ones, not everyone has a happy ending with trobalt). Although i did not have the same symptoms that you had, i did have at least three weird epidsodes which i describe in detail that were not pleasent and almost had me discontinue the treatment. All of them happen when i tried to raise the dosage to quickly, specially if taken on an empty stomach. I think usually the mistake happens since we start with to little trobalt (in my opinion you need at least three month supply to start and try) otherwise we become despair and try to raise the dosage quickly followed by periods without treatment while we get the next batch.

 

[locoyeti]

In my personal opinion I would be very carefull in trying this "aspirin approach".

This drug is not something to take lightly and/or take when you feel like it, I did it a couple of times and my t became alot worse for 3-4 days after taking 200mg before I went to sleep , now 3 weeks later it has subsided but it still is louder than before , so try at your own risk.

My GP said it is dangerous and it can cause a rebound effect as in my case.

I think if you have the form of T which is a constant sound which never fluctuates, i don't think RTG will work. I am guessing that you may have this form of T @Bart. This indicates that the hyperactivity originates in the auditory cortex itself. I think most people have a fluctuating T, where it is possible to modulate the T at more distal points relative to the auditory cortex (neck muscles, outer ear, middle ear, inner ear, DCN, etc) and RTG works much better in these cases.

@LetyO this is a broad spectrum drug, so its effects are not always uniform or predictable. but it seems that everyone who has tried it has either had no effect, or has had a decrease in T. i think the spike you are experiencing is temporary, and it should not dissuade you from continuing the trial. for me there were many strange acute effects while on the drug, but the overall effect was a permanent improvement in my T, which i think is achievable for most people that try the drug.

 

[amandine]

I think if you have the form of T which is a constant sound which never fluctuates, i don't think RTG will work. I am guessing that you may have this form of T @Bart. This indicates that the hyperactivity originates in the auditory cortex itself. I think most people have a fluctuating T, where it is possible to modulate the T at more distal points relative to the auditory cortex (neck muscles, outer ear, middle ear, inner ear, DCN, etc) and RTG works much better in these cases.

How do you know this? thanks!

 

[Onnie]

@Bart i dont think @LetyO used it as 'aspirin approach'. The user experience form shows she takes it 3x a day, or am i misstaken?

Could it maybe be the combination with the other medication? I looked trazodone up on Google and it's an anti depressant. I can imagine the combination of these two types of drugs doing weird stuff in the brain?

The user form also states she got her t from medication. Now as i recall reading most people that had succes with retigabine had noise induced t, right? And also the research where retigabine was found usefull was done on mice with noise induced t.

Just thinking out loud....

 

[Onnie]

@LetyO i am sorry about your bad experience. I understand you are worried about continuing.... I hope it has all settled a little bit by now? Perhaps you should really talk to a doctor about what happened?

 

[LetyO]

@Onnie It subsided to baseline within 5-10 minutes. I have noticed in the past that after having a really loud T day the following day tends to be much lower (5/10). I have not used this in an aspirin approach. I have tapered up to the 300mg dose over 3 weeks. I can't recall the exact date at this moment. I agree that it may not have any effect on my form of tinnitus although the sound most likely originates in the same place but the damage I experienced may have a different mechanism of action. Just guessing. I metabolize drugs very quickly which may explain the mild side effects I've experience up to this point. I had taken 300 mg three times as my evening dose with absolutely no side effects (with Trazadone) before this happened. I will most likely try again since all went back to normal within a short amount of time. I failed to mention that I had an odd sensation in my head that progressed from the left to the right like a wave. That day my T was the lowest it had been for months.

 

[LetyO]

Forgot to mentio in user experiences that I tend to take it on an empty stomach since it had not made a difference befor this episode. I will definitely eat befor taking it again!

 

[Nucleo]

Careful. Eye floaters are probably filtered out of consciousness by the same general thalamic machinery which is deficient in tinnitus. You're messing with some delicate stuff.

Floaters are actual objects present in the vitrous humour. You will see them regardless if you have any. I doubt trobalt creates debris in the eye but I could be wrong. I can see how Trobalt could give visual snow though.

 

[Zechariah]

Floaters are actual objects present in the vitrous humour. You will see them regardless if you have any. I doubt trobalt creates debris in the eye but I could be wrong. I can see how Trobalt could give visual snow though.

I think @linearb was talking about perception and brains filtering out floaters on consciousness level. So no one stated that Trobalt would actually create anything physical?

 

[Zechariah]

Floaters only treatment is vitrectomy (FOV).

Nope, Floaters only vitrectomy is the treatment. Said in this way the sentence gets whole other meaning and in this case the correct one.

 

[acufenero]

Hey, guys! I had a spike last Wednesday and my T is now unbearable (plus I think my H is back, too). I'm seriously considering giving Trobalt a shot; I live in Spain so I'd have no problem to buy it. My GP is OK with that but she obviously can't prescribe it, so she got me an appointment to the ENT (but it's far away, 11/19) but I already know that b*tch won't give me Trobalt.

Do you guys think I should try it by my own? I'm not afraid of side effects since I have so much to win and almost nothing to lose. Btw, I'm 22 and my T came on 08/2014 from an acoustic trauma.

 

[LetyO]

Just to give you all an update. I took 300 mg at 8 pm and 4 am with no appreciable side effects. T did not get worse nor did I feel sedated/disoriented. Just could not sleep. Got up every hour. I will continue. Thanks for your support.

 

[monacco]

@LetyO
stop taking trobalt
take an antidepressent to sleep