Retigabine (Trobalt, Potiga) — General Discussion

[Juan Carlos]

One question for anyone who has some idea

Lastly i am hearing the T only in my right ear most of the time, while on its beginning it was always in "Stereo", and the only way to silent the left ear was taking 300mg trobalt dose (when started trobalt)
¿does it mean i am getting cured?

Im not 100% sure if its my left ear that diminished or its my right ear wich raised its volume, I think its the first because sometimes im not able to hear my T in my left ear, that my right ear T is more pure tone, exactly as if i was taking 300 RTG one year ago.

Now a low dose of 100mg lowers my T, on my beginning i didn't feel any change with that dose.
Now i feel more its spike after some food intake or when my blood pressure raisens, before was almost always constant. But now at some moments i could think (not sure) that its higher than before in some specific moments, not sure because as now is more like a pure note, it may be just more noticeable .

Anyone had this kind of experience?

some of you , as @Danny Boy started with T in one ear and later moved to both. But my case its the oposite, it started equally in both ears and has either moved to right ear, or left ear was partially cured. It because of trobalt? probably but will never know for sure


i wil describe my T along with time

1. started as narrow noise in both ears, quite constant, more than 1 year ago
   
2. when taking trobalt full dose for 4 months, kind of moved to the head instead of ears
3. after taper off trobalt, it came beack to ears from head, or just ears T became louder and it masks the head T, anyways i heared more from ears than head when off trobalt
   
4. now after tapered off, and now taking some days low dose, most of time disappears from my left ear and right is purer tone

i wish this is the path to the cure

EDIT: i have to add that i have no specific cause of my T, i think is because of stress, but could be many others as neck contraction, TENS on my back, accoustic trauma in disco .. Seems that people with cause wich is ototoxic drug has more persistent and strong T, its not my case

 

[papu]

200/200/300 mg a day and still doing well. Most of the day is rarely hearable. Only a noticible at night or in quiet situations, i call that a 1 or a 2. no side effects *always take pill with food. In very rare ocasions
i do get spikes up to 4 /5 but usually stress related and they go out with the next pill. I wish doctor papanopopupupulos hurried up with sf00034 ....

 

[attheedgeofscience]

Yesterday, I reached 1200mg / day (400mg TID) on day 10. Still, and despite the high/maximum dosage, the main side-effect is drowsiness - not much else.

 

[monacco]

@attheedgeofscience
no interest of your update
you must mention the effect of this drug on your T ?

 

[gintas]

@gintas higher dose of trobalt will protect you agains saxo loud sound. Just be sure it doesn't make you too much dumb to teach
I would start thinking on teaching something different as Saxo will only make your T worse

i teaching with ER25 filters. yes i understand that biggest dose would help but then i can habituate to it..
.and yes would be good to change work , but after 19 years of work in a music to change it not easy..

 

[Bart]

Yesterday, I reached 1200mg / day (400mg TID) on day 10. Still, and despite the high/maximum dosage, the main side-effect is drowsiness - not much else.

At this dose, do you experience the drowsiness throughout the day or just briefly after intake ?

Thanks.

 

[papu]

At this dose, do you experience the drowsiness throughout the day or just briefly after intake ?

I now the question is not for me but right now at the dosage I am, took the pill at work and I am doing fine, tinnitus went to zero but no drowsiness.

****Always have it with food not on an empty stomach******

 

[attheedgeofscience]

At this dose, do you experience the drowsiness throughout the day or just briefly after intake ?

Thanks.

I take a 400mg pill at 9 PM after which I head off to bed and sleep until 3 AM. I then take another 400mg pill and sleep until 8 AM. I then take a 400mg pill at 2 PM (which usually requires a quick nap). But I am not drowsy throughout the day.

Trobalt is actually excellent as a sleep aid. A bit like full anesthesia: suddenly you are just "gone" - and when you wake up, you don't remember when you dropped off... A least that is my experience.

 

[shreddAr87]

Are there any sexual side effects with this drug? And it seems that this is the most effective medication for T so far is this correct?

 

[LetyO]

@Juan Carlos. I had the same effect when I started taking a lower dose of Trobalt. I rarely had any side effects at 100mg and never felt any change in my T after being on this dose. After I had to decrease to 100 mg BID there was a noticable decrease in my T for a short while as well as a mild sedative effect. This change decreased over the next few days. I am assuming it is because the concentration of the medication in my system is very low now. Maybe a certain steady state must be reached on a consistent level to manifest its effects on T. Just for the record I almost always take it on an empty stomach and rarely feel any side effects. It just depends on your level of sensitivity I guess.

 

[Silvio Sabo]

I take a 400mg pill at 9 PM after which I head off to bed and sleep until 3 AM. I then take another 400mg pill and sleep until 8 AM. I then take a 400mg pill at 2 PM (which usually requires a quick nap). But I am not drowsy throughout the day.

Trobalt is actually excellent as a sleep aid. A bit like full anesthesia: suddenly you are just "gone" - and when you wake up, you don't remember when you dropped off... A least that is my experience.

Any effects on tinnitus?

 

[monacco]

Any effects on tinnitus?

No he is on phase 1 it's for the safty . testing the effectivenesse may be next year lol

 

[jeannie]

Is Preslys cured of his tinnitus?did he just use retigabine or mix it with neurotin?

 

[Juan Carlos]

Is Preslys cured of his tinnitus?did he just use retigabine or mix it with neurotin?

he said so, but i tried this mix and didn't work, so who knows.. he is the only one wich worked this stuff

 

[Martin69]

10/10 T here today. Loud screaming high-pitched tones in my head. Absolutely unbearable.
Crying.
Took 200 mg of Trobalt to see if it has any effect.
I really don't know how to go on.

 

[valeri]

10/10 T here today. Loud screaming high-pitched tones in my head. Absolutely unbearable.
Crying.
Took 200 mg of Trobalt to see if it has any effect.
I really don't know how to go on.

Sorry to hear that Martin! Hope Trobalt helps to bring it down a bit.
Thinking of you!

 

[Martin69]

Sorry to hear that Martin! Hope Trobalt helps to bring it down a bit.
Thinking of you!

Thanks Valeri.

I don't know if Trobalt did much (after one hour now). I cannot really differentiate between a high-pitched buzzing head of 10/10 and 9/10 or 8/10. Also 200 mg is probably not enough for this. But I am more relaxed now. Seems having little bit effect like a benzo.

Nevertheless the anxiety kills me on the long run. I have this non-stop more or less. My body/mind is in anxiety mode 24/7. Sometimes more, sometimes less. I even don't know if it is only T. But suffering two years with severe T has of course in influence on this. If T goes on 10/10, this becomes unbearable.

I guess I need to look for a an AD which treats anxiety a little bit more. Remeron does not do much for me. I take 15 mg before sleep. That's it. I will look into something else like Lexapro.

 

[valeri]

Thanks Valeri.

I don't know if Trobalt did much (after one hour now). I cannot really differentiate between a high-pitched buzzing head of 10/10 and 9/10 or 8/10. Also 200 mg is probably not enough for this. But I am more relaxed now. Seems having little bit effect like a benzo.

Nevertheless the anxiety kills me on the long run. I have this non-stop more or less. My body/mind is in anxiety mode 24/7. Sometimes more, sometimes less. I even don't know if it is only T. But suffering two years with severe T has of course in influence on this. If T goes on 10/10, this becomes unbearable.

I guess I need to look for a an AD which treats anxiety a little bit more. Remeron does not do much for me. I take 15 mg before sleep. That's it. I will look into something else like Lexapro.

Did you think of giving Trobalt a go for short time at least to see if it works for you?

 

[Martin69]

Did you think of giving Trobalt a go for short time at least to see if it works for you?

Not planned yet. I think about more taking medication against anxiety.

 

[Carlos1]

10/10 T here today. Loud screaming high-pitched tones in my head. Absolutely unbearable.
Crying.
Took 200 mg of Trobalt to see if it has any effect.
I really don't know how to go on.

@Martin69 Damn Martin I feel terrible for you I know people frown on Benzos but Klonopin has help me control my anxiety and reduces my T some what. I never stay on the same dose and wean off and take breaks from it periodically. I hope better days are coming for you.

Carlos

 

[Martin69]

@Martin69 Damn Martin I feel terrible for you I know people frown on Benzos but Klonopin has help me control my anxiety and reduces my T some what. I never stay on the same dose and wean off and take breaks from it periodically. I hope better days are coming for you.

Carlos

Thanks Carlos. You cannot imagine what is drilling in my head. Really, really tough.
If people tell me it is only my reaction... Yes, of course. If I would not react to this, it would be much better.
But it seems I have my limbic system or CNS not under control. It reacts really badly.
I need to push through it and hopefully next day will be better.

 

[amandine]

I took 100mgs of trobalt today and it had no effect whatsoever.
About a week ago or more i took 50mgs of trobalt and it sent me to sleep.
Today nothing at all.....

 

[PnL67]

Hello, I currently have both T+H and I would like to know if somebody already experienced a 2 year old hyperacusis reduction by taking troblat ? Most reports I found implies Tinnitus and sometimes Hyperacusis which are more recent (like a year old). "

 

[papu]

I took 100mgs of trobalt today and it had no effect whatsoever.
About a week ago or more i took 50mgs of trobalt and it sent me to sleep.
Today nothing at all.....

Amandine i think if you are going to try it do not do the aspirin like approach. You really have to go all the way for at least a couple of months and taper up to a daily dosage of 600 to 1200 mg before you can really tell if it will affect your tinnitus or not.

 

[SkyGift]

I can only tell you that based on the forum trial post, it works best on people that aquired their tinnitus around one year or less. Also best results were in infection, acoustic trauma and hiper triglyceride cases. As I told you its only anectodal. Did you have vertigo associated with your hearing loss? (meniers disease). Have you gain some of the hearing back ? I have read that a major portion of people with sudden onset of hearing loss can gain everything back in less tha a year? As for the trobalt thing if you can find a doctor to prescribe it and do the follow up you could probably give it a try.

I've not vertigo fortunately.
At the beginning I had T+H, but after 3 months H removed, just I have a load T with high frequencies hearing loss. I checked my hearing every month during past 8 months, but unfortunately no improvement at all (nothing backed..)
Today I received my ordered Trobalt and I started with a tab. 100 mg. (totally 300 mg. a day: 100 at the morning+100 after lunch+100 after dinner). Hope it works for me

Also you can see my audiogram as above.
everything happened at one night, when I was slept

 

[just1morething]

Also you can see my audiogram as above.
everything happened at one night, when I was slept

How did you get your high frequency hearing loss, especially in your right ear may I ask? I've never heard if @attheedgeofscience experienced tinnitus reduction, only sedation and minimal side effects from Trobalt. I guess it's up to the user if they want to tell of their experiences. I'm using diazepam with high doses of gabapentin with variable results. If my noise goes away, it always comes back upon awakening.

 

[jeannie]

Martin69, I am like you and my nervous system is in fight or flight mode I guess 24/7 I can't sleep ,get panic attacks and no relaxation for me.I didn't get to sleep until after 400 am this morning and that's because of anxiety and screaming ears.its really taking a toll on me .

 

[SkyGift]

How did you get your high frequency hearing loss, especially in your right ear may I ask? I've never heard if @attheedgeofscience experienced tinnitus reduction, only sedation and minimal side effects from Trobalt. I guess it's up to the user if they want to tell of their experiences. I'm using diazepam with high doses of gabapentin with variable results. If my noise goes away, it always comes back upon awakening.

actually idiopathic sudden hearing loss. everything happened suddenly. about 8 months ago, one day at morning, when I wake up, I lost my hearing in both ears, more in right ear. Now I'm using Hearing Aid in my right ear.
After too many checking by several ENT doctors and neurologist, finally there was two episode:
1. virus infection !
2. severe hormonal changes (unbalanced) due to a Pituitary Adenoma which observed in my brain MRI !

 

[LetyO]

I have been off Trobalt for one week. Still waiting for my fefill. Yesterday took Gabapentin 300 mg and Clonopin 0.5 mg. Helped me sleep although upon waking T was as loud as ever. Took another Gabapentin 300 mg and clonopin 0.25 mg and my T was virtually gone for a couple of house. Each one taken alone has no result but taken together has an effect. According to the study these should be taken 3 times a day. I will continue until my next supply shows up. I began having horrible anxiety yesterday but today much much better. I also slept great on this combination. I thin it may work with Trobalt but it mut have something to do with concentation levels in your bloodstream to have a synergistic effect. Something to think about.

 

[amandine]

Amandine i think if you are going to try it do not do the aspirin like approach. You really have to go all the way for at least a couple of months and taper up to a daily dosage of 600 to 1200 mg before you can really tell if it will affect your tinnitus or not.

Yes I understand this but I am concerned about the fact reported to me by Danny Boy that Trobalt raises the white blood cells count which can of course in turn cause potentially cancer?
Also have an ongoing problem of overproduction of earwax in the T ear only. This ear was cleaned out last year after which the T started and then hoovered out again by ENT a couple of months ago to have again a hard plug of wax in the same ear. The ear keeps popping and changing pressure which I am told is due to the ear wax there. Plus of course the plug of wax and drops I am putting in to soften the wax is all making the screaming louder which is already way above any noise.....although yesterday it was really quiet but today of course it is louder than anything and simply unbearable. Doc prescribed anti depressants which I cant see the point in taking?
Also not sure which route to take for the ear cleaning - either syringing with warm water by the doctor or hoovering by the ent - both of which I find pretty traumatic....had it hoovered once by the ent and he was really horrible and short tempered....maybe the doc will be more gentle with the syringing which is done with a plastic tube and warm water squirted into ear.....???