Retigabine (Trobalt, Potiga) — General Discussion

[1MW]

Any update from @Mpt ? How is getting after stopping retigabine ?
His T returned or is still cured ?

 

[Markku]

Any update from @Mpt ? How is getting after stopping retigabine ?
His T returned or is still cured ?

Here's a quote of his latest update (in another thread) from last Friday...

by the way - still tinnitus free

 

[Christian78]

@Christian78

Just saw your latest User Experience. If it helps to know this, I have had similar experience with going up and down. I think most of us have. In your case you started out very bad, so it is a bigger swing for you. In my case, like I said in my last report, I had silent times on two different days. Now is just okay, earlier today it was, "Grrr. This again?" I think I may have aggravated some trigger points in my neck and got especially noisy, now it's had time to calm down.

So. It is a roller-coaster ride some days. I tell myself four things:

1. I am better off now, so just enjoy the moment.
2. I may get better with higher dose (staying at 600mg/day until I talk to my doctor).
3. I may keep my improvement when I stop.
4. Other methods may work for me (meeting my chiropractor for nutritional advice Tuesday).
5. Now that I have been on Retigabine, I *know* that drug approaches can work, so I can look forward to the newer better drugs that are coming with more confidence.

We have made great strides in this experiment, friends and neighbors. We have proven that such a thing as changing the brain to attenuate tinnitus sound and annoyance is possible. Personally I feel that this has made me feel better even about habituation. Mostly I do still hear my tinnitus, but it is low enough that it does not bother me, so if it becomes a little louder, it just means I will need more time to adjust. It does not scare me or make me want to withdraw from life as much as it once did.

Hang in there, Christian! We are not as deep in the cave as we used to be!

I agree it is just i became immune at dowe of 200 mg. 205, 300, i had almost total silences, now almost what i had before start. and goes extremely up and down....

 

[Danny Boy]

I agree it is just i became immune at dowe of 200 mg. 205, 300, i had almost total silences, now almost what i had before start. and goes extremely up and down....

Christian try 500mg twice a day and then 300mg at night. It's the dose I'm on and it's working for me. Or try 600mg twice a day. Remember the dosing shouldn't be the same as recommended, you need to experiment.

 

[Christian78]

I spoke with prof. sci. Dr Daniel Jeanmonod in Switzerland. http://www.pubfacts.com/author/Daniel+Jeanmonod, who had a grants and does a tinnitus operation, the only one in world.

He told me that sometimes person get used to medicine and medicine does not have effect on him. Even with washout period and repeated dosage person will not get get same effect as before. This is very well known effect in medicine for neurological disorders.

I trust him much more that to dr. Negler. He told me not to believe in a Neglers story about acceptance of tinnitus or get used it. And well prof. sci. dr. Jeanmonod explained me that there is special way how to treat tinnitus, and accepting it but not just go into acceptance but treat background of psychological problems and make path because that can then free you from tinnitus, and lover it influence over your life and that there are definitely medications that help cope with it.

He told me he believes i have more psychological tinnitus, not neurological, but because I was kind to him he is willing to to check up if i insist on it.

So he said it is possible to get used on medications permanently, so they lose effect permanently after some time.

quote my text, or agree or say what you think...

i am sad if i cant wash out my med and start again

 

[Christian78]

Christian try 500mg twice a day and then 300mg at night. It's the dose I'm on and it's working for me. Or try 600mg twice a day. Remember the dosing shouldn't be the same as recommended, you need to experiment.

last time when in took 300mg,and 2 h later 200 so it was not 500 it was maybe 450, my heart almost stopped, ambulance came measure irregular heart beats, speed ups and fall down of pressure and i was almost catatonic for 1,5h

 

[Danny Boy]

last time when in took 300mg,and 2 h later 200 so it was not 500 it was maybe 450, my heart almost stopped, ambulance came measure irregular heart beats, speed ups and fall down of pressure and i was almost catatonic for 1,5h

You really have bad reactions to trobalt!? I've not had that effect at all, not even at higher dose

 

[Juan Carlos]

I spoke with prof. sci. Dr Daniel Jeanmonod in Switzerland. http://www.pubfacts.com/author/Daniel Jeanmonod, who had a grants and does a tinnitus operation, the only one in world.

He told me that sometimes person get used to medicine and medicine does not have effect on him. Even with washout period and repeated dosage person will not get get same effect as before. This is very well known effect in medicine for neurological disorders.

I trust him much more that to dr. Negler. He told me not to believe in a Neglers story about acceptance of tinnitus or get used it. And well prof. sci. dr. Jeanmonod explained me that there is special way how to treat tinnitus, and accepting it but not just go into acceptance but treat background of psychological problems and make path because that can then free you from tinnitus, and lover it influence over your life and that there are definitely medications that help cope with it.

He told me he believes i have more psychological tinnitus, not neurological, but because I was kind to him he is willing to to check up if i insist on it.

So he said it is possible to get used on medications permanently, so they lose effect permanently after some time.

quote my text, or agree or say what you think...

i am sad if i cant wash out my med and start again

Thats a sad fact on wich i was thinking. My grandmother dead from cancer and I heard that painkillers dont work with same efficiency forever, I guess same happens with other nuero medicines.
So now yeah, we have a solid reason to do the taper up a faster as posible. I hope that making tolerance to RTG wont influence on Autifonys drug.

knowing this, i think is not a good idea stay on a low dosage, go as closer to 1200 if its ok re side effects and stay in silence as much as posible hoping for some consolidating changes. Its not posible to stay on RTG for years for many reasons

 

[Hudson]

last time when in took 300mg,and 2 h later 200 so it was not 500 it was maybe 450, my heart almost stopped, ambulance came measure irregular heart beats, speed ups and fall down of pressure and i was almost catatonic for 1,5h

Potassium channels do control heart function. However, the potassium channels that retigabine works on are not supposed to be the same ones that control heart function. It is unfortunate that you've had this side effect.

 

[Juan Carlos]

Potassium channels do control heart function. However, the potassium channels that retigabine works on are not supposed to be the same ones that control heart function. It is unfortunate that you've had this side effect.

Retigabine increases the QT interval

 

[Rube]

You really have bad reactions to trobalt!? I've not had that effect at all, not even at higher dose

Do you experience any of the side effects that others are experiencing? Also by any chance are you having your Dr. Perform any blood or urine monitoring?

 

[Telis]

He told me he believes i have more psychological tinnitus, not neurological, but because I was kind to him he is willing to to check up if i insist on it.

Hi Christian, did he say the reason that he believes this?

 

[Nick the Swede]

Scary stuff this. If i had a screaming T day and somebody put one box of Trobalt, one box of random Z pill and a bottle of whisky in front of me. I think the Trobalt would have been my third choice

 

[Christian78]

Hi Christian, did he say the reason that he believes this?

traumas i had in life like war

 

[Christian78]

You really have bad reactions to trobalt!? I've not had that effect at all, not even at higher dose

You are young, i am just scared you will one day find out you damaged your brain without recovery, you will have tinnitus+ essential tremors + eyes problems. what will you do then?

 

[SoulStation]

Christian try 500mg twice a day and then 300mg at night. It's the dose I'm on and it's working for me. Or try 600mg twice a day. Remember the dosing shouldn't be the same as recommended, you need to experiment.

So you're on 1300 mg? You said 500+500+300?

 

[Telis]

traumas i had in life like war

I see, thx for the answer. Hope you are doing ok.

 

[Christian78]

Do you experience any of the side effects that others are experiencing? Also by any chance are you having your Dr. Perform any blood or urine monitoring?

we all have similar side effects, that dont go away. After speaking wit sho many people on trial i get same, and danny boy may try to change and say he does not have but he is young, his side effect exist and i they do,

SIMPLY TO TAKE IT, WE ARE DRUGGED AS HELL.

 

[valeri]

traumas i had in life like war

And that's a big one my friend!
I understand

Our best years of youth wasted on some shit others created for us!
Now we live with the results of those creations!

 

[john2012]

thankfully looks like not everyone is having bad side effects
this widely available epilepsy drug is bound to disagree with some

will be interesting to monitor dannyboy's progress over the coming weeks

 

[theekarwash]

Day 4 of taking 50mg once a day. I've been taking it at about 8pm (9:54pm here right now) and today is the first day I've seen actual (probable placebo?) results. It seems it's a small bit quieter now than it was all day (I had a particularly bad day).

I also got another hearing test today, plus one of those tests that measures how well your inner ear hair cells are working. Turns out I have a small notch in my left ear (bad ear) at the frequency of my tinnitus. My hearing test is pretty much the same as 6 months ago, my lowest is 10-15 dB at 6khz. The rest are at about 0dB. Audiologist was very happy with the results of my hearing test, claiming that it is "perfect" which is the second audiologist to tell me this. Trobalt doesn't seem to be affecting my hearing, which I'm sure a lot around here will be happy to hear!

 

[Telis]

thankfully looks like not everyone is having bad side effects
this widely available epilepsy drug is bound to disagree with some

will be interesting to monitor dannyboy's progress over the coming weeks

Huh!? Widely available? Do you know the lengths people are going to get this crap?

 

[theekarwash]

Huh!? Widely available? Do you know the lengths people are going to get this crap?

I think John means that it's available in several different countries worldwide.

 

[xanaxvictim]

So you're on 1300 mg? You said 500+500+300?

I'm afraid someone is taking the risk of going beyond the maximum recommended dosage to see what will happen

 

[SoulStation]

It's just a matter of time before someone gets hurt due to this drug.

 

[sticky]

Yes, I have decided to go all in at this point , its simply killing me . I have a pretty good attitude and I dont freak out easily,but I am at the end of my rope.

I realize that when I write about silence it sounds like I am doing great , but its proper insane between that.
I even stopped the Trobalt as between the dosages it was super bad so I guess I need to go for a proper dosage and see what that does. The mornings are unbelievable and that shit might crack me at the end. I truly feel like I cannot take much more of this.

@RaZaH, wishing you good luck

Can I ask, are you saying that after you have experienced some relief, your tinnitus comes back louder than before RTG?

Is RTG varying your tinnitus much more than pre RTG?

sticky

 

[dan]

Jeanmonod explained me that there is special way how to treat tinnitus, and accepting it but not just go into acceptance but treat background of psychological problems and make path because that can then free you from tinnitus, and lover it influence over your life and that there are definitely medications that help cope with it.

So something in line with Julian Cowell's approach of letting go of tinnitus.

He told me he believes i have more psychological tinnitus, not neurological, but because I was kind to him he is willing to to check up if i insist on it.

Did he tell you why he believes that your tinnitus is more psychological?

 

[xanaxvictim]

Did he tell you why he believes that your tinnitus is more psychological?

To me there's no difference whatsoever between psychological and neurological
a psychological T also reflects underlying neuronal hyperactivity is probably not much different from a neurological (ie. with hearing loss) cause

 

[1MW]

Is important because if you have T from benzo withdrawal the neuronal hyperactivity will stop after
some time that you cut off benzos (>1year).
After a year of cutting benzos HF T will stop. Others with hearing problems T probably will not stop. Benzos induced T is curable if you stay away from benzos for long time and start exercise/walking.

In general if the damage in hearing is minimal then you have good changes for T stop.
If serious problem exists in hearing then the changes are less.
T intensity has to do with difference in hearing damage not in total hearing damage
only in differential hearing damage before and after T.

For example if my audiogram in birth was 40db and after 30 year develop T and my audiogram
is 45db the problem for T is the 5db not the 45db.
deafferentation is the cause not the total hearing loss after some time brain habituates
the deafferentation and T becomes lower but if you make damage in hearing continuously
then you T will not fade out but will be more intense.
So the first thing should be the prevantion of more damage if the cause is known.
Known causes is noise / ototoxic drugs / lack of sleep etc.

 

[Christian78]

So something in line with Julian Cowell's approach of letting go of tinnitus.

Can you get me that book

Did he tell you why he believes that your tinnitus is more psychological?

because he did not find reason for fisical damage of nerve, or hearing demage.