Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

I dont have experience on tapering off but I would follow the prospect: 150mg/day less every week
For sure side effects tend to fade but i dont know if that's because of tolerance and that tolerance will affect the effect on T also (till know i was only tapering up so i cannot know on my experience). maybe some doctor can help on that @Dr. Nagler ?

you never lose side effects. point was i am using trobalt, and it has less and less effect

Honestly I don't trust dr. Negler anything that he says, for me he is just enjoying his corner and making people miserable. That is my personal opinion, and it is what i think, btw opinion of many but people don't want to say it publicly. I will not go and say this to him or attack him. He is profesional and many others trust in him and that is ok. Everyone chooses his doctor therefore I have specialist in Croatia and Sweden who are good doctors for a difference for me.

I will try to slow down as you say 4-5 weeks, if i start now in a month i will be staring at a gun with full blown tinnitus and load of meds because i cant sleep. Again my opinion.

There were other people who went down on trobalt because they had to, and they did not took 6 weeks. Anyway i will do it slowly. I give a chance 22% that trobalt had permanent positive effect, 35% that i got immune on trobalt, 43% that my t went worse.

I know if i skip dosage (miss few hours) my t screeches immediately, and effect i had before is not like 2/10, it went to 4/10, then 5/10 ( i am using 900mg), now is 7.5-9/10...

From a today i will star lowering my dosage and only i will know on what dosage I am at moment, and I will share it, don't ask me please what dosage and how it goes because sometimes can be irritant when a lot of people send private message. to my friends and dear people i will answer because i feel i must, for other i will make rapport maybe weekly if not more often.

Big friendly hug for all, and huge one for my friends.

 

[Danny Boy]

you never lose side effects. point was i am using trobalt, and it has less and less effect

Honestly I don't trust dr. Negler anything that he says, for me he is just enjoying his corner and making people miserable. That is my personal opinion, and it is what i think, btw opinion of many but people don't want to say it publicly. I will not go and say this to him or attack him. He is profesional and many others trust in him and that is ok. Everyone chooses his doctor therefore I have specialist in Croatia and Sweden who are good doctors for a difference for me.

I will try to slow down as you say 4-5 weeks, if i start now in a month i will be staring at a gun with full blown tinnitus and load of meds because i cant sleep. Again my opinion.

There were other people who went down on trobalt because they had to, and they did not took 6 weeks. Anyway i will do it slowly. I give a chance 22% that trobalt had permanent positive effect, 35% that i got immune on trobalt, 43% that my t went worse.

I know if i skip dosage (miss few hours) my t screeches immediately, and effect i had before is not like 2/10, it went to 4/10, then 5/10 ( i am using 900mg), now is 7.5-9/10...

From a today i will star lowering my dosage and only i will know on what dosage I am at moment, and I will share it, don't ask me please what dosage and how it goes because sometimes can be irritant when a lot of people send private message. to my friends and dear people i will answer because i feel i must, for other i will make rapport maybe weekly if not more often.

Big friendly hug for all, and huge one for my friends.

Go up to 1,200mg.

 

[SoulStation]

Go up to 1,200mg.

Danny - he was near 1200 mg and having brutal side effects and no good affect on t. He could hardly function and was comparing himself to an Alzheimer patient. Don't blurt out advice to someone who doesn't need it.

 

[Christian78]

Go up to 1,200mg.

today i took 250 and hardly survive it. doctor said go to 400 2-3 weeks, i will go down and then start again.

 

[john2012]

Go up to 1,200mg.

Hi Danny
Are you now taking 1200 regularly?
It seems to have had a good effect on you, congratulations.
How long do you plan on taking trobalt?
presumably you have a reliable affordable supply
I want to start taking it and have been encouraged by your good result.
Do you notice any problems between dosages?
We're all wondering if you can be healed permanently, hope so.
sorry about all the questions, but its worked for you at the optimal dosage.
wishing you continued relief.

 

[stelar]

@john2012
Do you ever read his posts?

Do you notice any problems between dosages?

oh nothing major, just a minor suicide goodbye letter, no biggie.

 

[Larry OT]

It appears that you have to be on this drug non stop and the long term effects are not known for its efficacy.

It's certainly something that needs to studied for tinnitus sufferers.

It's a dangerous drug with serous side effects, but if it helps I can certainly see the desire to take it.

 

[amandine]

@stelar

Re danny boy
you are right in a way, Not a problem between doses.
He was fine on 300 a day. But he wanted understandably to kill the T.
So he doubled the amount that he took. So then he was on 600 when he felt really bad and suicidal cos the t returned.
Now on 1200 he is great again. Big jump tho....

 

[AntonR]

Sure seems to help a lot of people, I think at this point its pretty fair to say that its not just a placebo. But I do agree, too many scary side-effects to stay on this stuff long term.

I suppose Mpt was just really lucky with his tinnitus completely ceasing (for the most part) after being on this stuff, because from what I've read so far from our other members there's definite relief but its only when the drug is in their system. Who knows, maybe Mpt's tinnitus just happened to vanish by itself (sounds like a dream come true I know, but possible) mid way through his trobalt dosing. Because at this point we definitely know something in this drug is calming the effects of T.

I'd love to try some of the stuff, but I'm not going to go through all the hassle of trying to find someone to prescribe it to me, on top of that it sure does have some sketchy side effects. Hopefully in the coming years we will have something targeted more towards tinnitus with less severe unwanted effects. On the bright side, at least were making progress eh? Finding something that finally works is no small feat, definitely a step in the right direction.

 

[valeri]

After seeing the results from others taking this drug I truly don't believe that mpt's tinnitus is gone as a result of trobalt.

 

[SoulStation]

@Johno I'm sorry you had to go off man... I would be careful about resuming such a high dosage after kidney pain. Did you get any blood work done?

 

[Christian78]

Dear friends,

I am my parents home. I will have to go to Sweden before Christmas, and that way is better, i don't want them to look at me in this state.

I HAVE REGRESSED TOTALLY TO OLD TINNITUS. I have took 400mg. No reaction on tinnitus. I woke up and take meds in morning. In morning we all have t but meds kill it. If @locoyeti would be kind to confirm this statements.

I took 400mg. NO EFFECT AT ALL ON TINNITUS. it is just that i can hardly write after 3 hour, walk, i am drugged, or rather say i ma not drugged but my brain can work. I used heavy meds and they cloud your mind, here you are aware of all but you can not use it.

I must report I USED ACRN BEFORE AND NOW IT DOES NOT HAVE ANY EFFECT. I used ACRN before , before my tinnitus got 3 times worse in may 2013 and it had much positive defect . I used it also in morning when i wake up and have bit of tinnitus and function grate under trobalt. NOW NO EFFECT.

My Trobalt has no effect any more on my tinnitus.


I will go to Sweden, maybe be taken on psychiatry, if they can give me single room, and if they can give me some med's that can not make tinnitus worse. I hate psychiatry. But they will have watch on me so I don't kill myself. And there I will have philologist and priest.

I went now to a hospital, my father injured eye and it became red, so i sent him yesterday to emergency. We are bit wealthy here, and very good known. Before war this was multi-national but now it 70% one nation. So we have good connection because we stay and refugees came to city. (huge corruption is here). So ordinary people wait 2 moth to get to doctor, but we call friend doctor this morning because my father has eye red and we went at 10 in morning to doctor for eye, the best specialist in region. I have to mention in Juny I was to ophthalmologists and checked eye bottom, and retina color, and it was ok.

So she was kind to check my father this morning and then she check me, and vision on right eye was not so ok, whe said she want to do some analyses, 2 MRI to check eye nerves and tome typhoid gland because i still have tinnitus and it could be from some pressure on that gland ( i ma not sure what gland she said, i forgot it after 30 sec after she said it to me. (Trobalt effect).

Anyway she told me I have good eye bottom but by my left eye see much worse then right eye and want to do some analisis becou it is not normal that is such diference. Then she checked retina and said there is slight discoloration of retina on left eye... nothing dangerous. I must mention i done same analasis in june and my doctor did not say anything about discoloration or she thought it is not worth mentioning... So I do not say that I may ahve developed retina discoloration, and it was short time... I just say what i got, why I dont know.

What level is you tinnitus at now? And what was it before you started taking trobalt?
now is 9-10/10 sometimes 7-8 when i take 400mg + clonazepam, before 9-10/ sometimes a killer of 13 where you wanna rip of any hair that is left on my head

 

[Jesse Pinkman]

Dear friends,

I am my parents home. I will have to go to Sweden before Christmas, and that way is better, i don't want them to look at me in this state.

I HAVE REGRESSED TOTALLY TO OLD TINNITUS. I have took 400mg. No reaction on tinnitus. I woke up and take meds in morning. In morning we all have t but meds kill it. If @locoyeti would be kind to confirm this statements.

I took 400mg. NO EFFECT AT ALL ON TINNITUS. it is just that i can hardly write after 3 hour, walk, i am drugged, or rather say i ma not drugged but my brain can work. I used heavy meds and they cloud your mind, here you are aware of all but you can not use it.

I must report I USED ACRN BEFORE AND NOW IT DOES NOT HAVE ANY EFFECT. I used ACRN before , before my tinnitus got 3 times worse in may 2013 and it had much positive defect . I used it also in morning when i wake up and have bit of tinnitus and function grate under trobalt. NOW NO EFFECT.

My Trobalt has no effect any more on my tinnitus.


I will go to Sweden, maybe be taken on psychiatry, if they can give me single room, and if they can give me some med's that can not make tinnitus worse. I hate psychiatry. But they will have watch on me so I don't kill myself. And there I will have philologist and priest.

I went now to a hospital, my father injured eye and it became red, so i sent him yesterday to emergency. We are bit wealthy here, and very good known. Before war this was multi-national but now it 70% one nation. So we have good connection because we stay and refugees came to city. (huge corruption is here). So ordinary people wait 2 moth to get to doctor, but we call friend doctor this morning because my father has eye red and we went at 10 in morning to doctor for eye, the best specialist in region. I have to mention in Juny I was to ophthalmologists and checked eye bottom, and retina color, and it was ok.

So she was kind to check my father this morning and then she check me, and vision on right eye was not so ok, whe said she want to do some analyses, 2 MRI to check eye nerves and tome typhoid gland because i still have tinnitus and it could be from some pressure on that gland ( i ma not sure what gland she said, i forgot it after 30 sec after she said it to me. (Trobalt effect).

Anyway she told me I have good eye bottom but by my left eye see much worse then right eye and want to do some analisis becou it is not normal that is such diference. Then she checked retina and said there is slight discoloration of retina on left eye... nothing dangerous. I must mention i done same analasis in june and my doctor did not say anything about discoloration or she thought it is not worth mentioning... So I do not say that I may ahve developed retina discoloration, and it was short time... I just say what i got, why I dont know.

What level is you tinnitus at now? And what was it before you started taking trobalt?

 

[Christian78]

What level is you tinnitus at now? And what was it before you started taking trobalt?

now is 9-10/10 sometimes 7-8 when i take 400mg + clonazepam, before 9-10/ sometimes a killer of 13 where you wanna rip of any hair that is left on my head

 

[Jesse Pinkman]

now is 9-10/10 sometimes 7-8 when i take 400mg + clonazepam

And what was it before you started taking the drugs?

So in other words, trobalt has not made your tinnitus any worse?

 

[jeannie]

Christian.... I am so sorry you are going through this... I sure hope all gets better for you. gentle hugs to you!

 

[Danny Boy]

now is 9-10/10 sometimes 7-8 when i take 400mg + clonazepam, before 9-10/ sometimes a killer of 13 where you wanna rip of any hair that is left on my head

Clonazepam shouldn't be mixed with trobalt, they interact. Maybe that's the problem?

 

[just1morething]

May God please have mercy on all of us "ringers"

 

[Danny Boy]

Danny. That's not the problem.
Could you please explain on what leval they interact and quote a scientific source?

Taking other medicines
If you are taking more than one medicine they may interact with each other. At times your prescriber may decide to use medicines that interact, in other cases this may not be appropriate.

The decision to use medicines that interact depends on your specific circumstances. Your prescriber may decide to use medicines that interact, if it is believed that the benefits of taking the medicines together outweigh the risks. In such cases, it may be necessary to alter your dose or monitor you more closely.

Tell your prescriber the names of all the medicines that you are taking so that they can consider all possible interactions. This includes all the medicines which have been prescribed by your GP, hospital doctor, dentist, nurse, health visitor, midwife or pharmacist. You must also tell your prescriber about medicines which you have bought over the counter without prescriptions.

The following medicines may interact with Trobalt:

• carbamazepine
• clobazam
• clonazepam
• digoxin
• gabapentin
• lamotrigine
• levetiracetam
• oxcarbazepine
• phenobarbital
• phenytoin
• pregabalin
• sodium valproate
• thiopental
• topiramate
• zonisamide

The following types of medicine may interact with Trobalt:

• anaesthetics
• medicines that prolong the QTc interval

If you are taking Trobalt and one of the above medicines or types of medicines, make sure your prescriber knows about it.

http://www.nhs.uk/medicine-guides/p...cine=Trobalt&preparationTrobalt 100mg tablets

 

[SoulStation]

I stand corrected- I just don't think that could possibly solve the problem with his non responsiveness to the Trobalt. I understand you were just trying to help. Now that its been a little more time were seeing the true Retigabine . discoloration and vision problems diagnosed by an optometrist. Kidney pain. Kidny failure. Kidny stones . jesus were playing with fire. Its just a matter of time before someone gets permanently injured because of "team trobalt".

 

[Albertus]

You can not make a salad of drugs that affect the brain and finish well. Trobalt it should take only. Before test is better to abandon any other drug.

 

[Martin69]

I stand corrected- I just don't think that could possibly solve the problem with his non responsiveness to the Trobalt. I understand you were just trying to help. Now that its been a little more time were seeing the true Retigabine . discoloration and vision problems diagnosed by an optometrist. Kidney pain. Kidny failure. Kidny stones . jesus were playing with fire. Its just a matter of time before someone gets permanently injured because of "team trobalt".

Soul, If you can cope without meds or Trobalt, good for you.
I have real problems going through my day with a 9/10 T. Loud, high-pitched 15-16 kHz, oscillating.
So I absolutely understand @Christian78 and @Danny Boy.
But because of the side effects, I also do not want to go the Trobalt route.
People are just desperate and suicidal and take whatever lowers the volume.

 

[Jesse Pinkman]

Soul, If you can cope without meds or Trobalt, good for you.
I have real problems going through my day with a 9/10 T. Loud, high-pitched 15-16 kHz, oscillating.
So I absolutely understand @Christian78 and @Danny Boy.
But because of the side effects, I also do not want to go the Trobalt route.
People are just desperate and suicidal and take whatever lowers the volume.

If I understand correcly the 9/10 is a meassure of botherness, wich is a mix of sound type, sould level and tollerance of each individual person. Im just wondering, how loud would you say you T is in db (both normally, and at its worst)?

 

[Christian78]

Clonazepam shouldn't be mixed with trobalt, they interact. Maybe that's the problem?

nope it is not, clonazepan is only help, as trobalt became same as suggar pills

 

[Christian78]

If I understand correcly the 9/10 is a meassure of botherness, wich is a mix of sound type, sould level and tollerance of each individual person. Im just wondering, how loud would you say you T is in db (both normally, and at its worst)?

you ask to much from a person in agony

 

[Martin69]

If I understand correcly the 9/10 is a meassure of botherness, wich is a mix of sound type, sould level and tollerance of each individual person. Im just wondering, how loud would you say you T is in db (both normally, and at its worst)?

Yes. On my scale, 10/10 is suicidal. 9/10 is one level below. For me, it is high anxiety and depression.
Loudness is difficult to say. T is measured above hearing level (db sl). I don't know the db or dbsl of my T. It is unmaskable or only with loud cricket sounds. I can hear it (not always) even in the shower. It is on this level 95% of the time. If I am very lucky, I seldomly have a lower day. But because of the pitch, it is always audible.

 

[Jesse Pinkman]

Yes. On my scale, 10/10 is suicidal. 9/10 is one level below. For me, it is high anxiety and depression.
Loudness is difficult to say. T is measured above hearing level (db sl). I don't know the db or dbsl of my T. It is unmaskable or only with loud cricket sounds. I can hear it (not always) even in the shower. It is on this level 95% of the time. If I am very lucky, I seldomly have a lower day. But because of the pitch, it is always audible.

Anxiety, depression and tinnitus is such a vicious cycle. Theyre all feeding each other. I hope you can break the cycle one day. I think your best hope will be to habituate to the T. If you manage to do that the depression and anxiety may subside and as a result, your T may even lower in volume because it no longer has the depression and anxiety to feed it. Habituation will be hard for you Martin, but it still is possible and it will take time. Dont give up hope.

 

[kevin b]

I have had T for one year now and am dealing better. I will say my heart bleeds for those of you that are in such pain. I will pray for you and hope you don't give up and exhaust every avenue to get better.
God Bless

 

[avocat]

I'm so sorry, @Christian78. But you stated:

I will go to Sweden, maybe be taken on psychiatry, if they can give me single room, and if they can give me some med's that can not make tinnitus worse. I hate psychiatry.

I used to feel the same way about psychiatry. Thought it was a bunch of bunk. Then I ended up where you're headed, and I was so desperate that I was willing to try anything. And as cynical and closed-off as I was, therapy actually helped me! Me, who thought mindfulness and therapy was just a bunch of baloney spouted by people who didn't understand what I was going through. Yet it helped me in unimaginable ways. If you end up in the psychiatric unit, I just want to advise you to give the doctors a shot and open your heart to what they tell you. You have nothing to lose.

 

[valeri]

I'm so sorry, @Christian78. But you stated:



I used to feel the same way about psychiatry. Thought it was a bunch of bunk. Then I ended up where you're headed, and I was so desperate that I was willing to try anything. And as cynical and closed-off as I was, therapy actually helped me! Me, who thought mindfulness and therapy was just a bunch of baloney spouted by people who didn't understand what I was going through. Yet it helped me in unimaginable ways. If you end up in the psychiatric unit, I just want to advise you to give the doctors a shot and open your heart to what they tell you. You have nothing to lose.

Would you mind sharing more about your experience?
When you say mindfulness and therapy do you mean meditation or it's something else?
It's good to know that people improve using different therapies.
Thanks!