Retigabine (Trobalt, Potiga) to Be Discontinued

#61
linearb said:
floaters and visual snow are different; we might expect visual snow to have a connection to tinnitus, but floaters are literally cellular material floating in the eye, several people seem to have developed this problem directly from Trobalt, and at least one person on here had an ENT who had a whole complex theory about why Trobalt specifically would cause this problem.
Click to expand...

Did you watch the video?
 
#62
Alue said:
Did you watch the video?
Click to expand...
yes, and I've previously read all the whitepapers he cites. It's interesting, for sure, but I think we're likely to be looking at heterogeneous sets of patients, multiple etiologies with more or less shared symptoms when you slice the demographics in various ways.

The presenter has more or less the same set of symptoms and drawn the same conclusions about them that I have in the last two decades, haha. A switch got flipped somewhere. I would not say that my condition has been progressive; the visual snow is the same as it was in 1999, and the tinnitus only got worse following a noise trauma.

Yoga and meditation are uniformly so helpful to a significant number of high-distress patients with various conditions that there is clearly a lot of neurological stuff going on under the hood, and while there is an increasing amount of scientific interest (and therefore data), we're still in the very early phases of understanding how these things work and therefore what protocols should be indicated for what condition... and, as they are palliative and not curative, there will no doubt always be a large peanut gallery of naysayers.
 
#63
linearb said:
yes, and I've previously read all the whitepapers he cites. It's interesting, for sure, but I think we're likely to be looking at heterogeneous sets of patients, multiple etiologies with more or less shared symptoms when you slice the demographics in various ways.

The presenter has more or less the same set of symptoms and drawn the same conclusions about them that I have in the last two decades, haha. A switch got flipped somewhere. I would not say that my condition has been progressive; the visual snow is the same as it was in 1999, and the tinnitus only got worse following a noise trauma.

Yoga and meditation are uniformly so helpful to a significant number of high-distress patients with various conditions that there is clearly a lot of neurological stuff going on under the hood, and while there is an increasing amount of scientific interest (and therefore data), we're still in the very early phases of understanding how these things work and therefore what protocols should be indicated for what condition... and, as they are palliative and not curative, there will no doubt always be a large peanut gallery of naysayers.
Click to expand...

I know, it's similar to what I've been thinking for some cases of tinnitus, especially ones that arise for seemingly no reason (no severe acoustic trauma, no ototoxic medications, etc.). My point being he started having a central sensitization disorder and started seeing visual snow, floaters, around the same time his tinnitus begun. Whatever filters out noise in his sensory system went haywire. Now, you are correct, floaters are a very physical thing, but maybe some people have a mild case of floaters but never really notice them before.

I do think what Kyxwz was saying in the other thread could be right. That trobalt caused his floaters because his eyes suffered an immediate dehydration process by increasing the drug too fast. It does give me dry eyes too, for which I've been taking eye drops and gel eye drops (I don't know if that helps, though).

I have been thinking that I should taper off, as it does give me relief, but I think it's only temporary. It's hard, though. Because on it I feel mostly normal and off it I just want to die.
 
#64
hi all:

I was wrong about eye Floaters. apologize. the eyesnow seem to be most tinnitus related.

my heart go to people that was in despair took trobalt and get others health issues. I suffer first of trigeminal Nevralgia recurrent after rizotomy. it's definitely a central problem. I feel discouraged a lot because my first medication was tegretol, a drug of last century and now on trileptal 1200mg. If the research did nothing for TN suffers I'm disappointed about all the false hope or doubtful research about those infamous sounds
 
#65
I rolled on MDMA again last weekend. It was a week earlier than I had planned. You're supposed to wait a month (at least, ideally 1-3 months) between rolls due to the inevitable serotonin depletion.

But I was having a moment of weakness with my tinnitus last weekend. And I was like "eh fuck it!" And dug out my bag of MDMA crystal.

I intended on a bigger dose. And I took an even bigger dose than recommended. About 150mg is right for my body weight. With an added booster dose of about 100mg about an hour and a half in.

But instead I took a 200mg rock and did another 100mg about an hour and a half in.

About 20 minutes into the experience I started feeling warm and a little light headed. And then I'm like "oh. It's starting."

So about a 1/2 hour in, I notice my tinnitus getting louder. The opposite effect of what I was after! However I realized it was an effect of the drug and that helped me ride it out.

But as I started approaching about a hour in it starts building the intensity of my T. And then it kept building. And building. And BUILDING!!! Until I felt my head was about to literally vibrate apart and then explode.

But then....I felt this intensely comforting warmness envelop my body. And in a whooshing sensation the tinnitus receded to the back ground. It was still there and still intense. But the impressive thing is, it was no longer bothering me.

I was accepting the sensation that always bothers and challenges me. My tinnitus is an extremely hard, abrasive sensation that's always there and leaves me depleted and stressed out. But at this point in the experience, it wasn't bothering me in the least.

Instead of tinnitus being a "hard" experience that was difficult to accept. It turned into a "soft" experience, despite the way it sounded. And was completely 100% acceptable. It was absolutely okay to be experiencing the tinnitus at that point.

What I learned about my tinnitus in this session (and to a lesser extent at the previous session at 1/2 this dose) was the extreme pervasiveness of this disorder throughout my brain. Literally every corner of my mind that ai could visit was simply bathed in sound. It was everywhere. There was no escape. I realized I would probabably die this way.

But the most important realization I had during all this, was that it was ok and something that was easy to accept. All was well with the world at that point.

That was at about an hour to an hour and a half in. So at 1.5 hours like I said I took the booster dose. Another 100mg. And at about the 2 hour mark, my perception of the tinnitus was that it was actually getting quieter.

And at about 3 hours in, the tinnitus, while not entirely gone, was so subsided at that point I had to focus on it to even notice. For a while, it was almost entirely gone. An amazing sensation that I wish I had all the time!!!

Then at about 4 hours the tinnitus started coming back. At 5 it was at the usual levels (in other words, pretty bad). But I was still accepting it, and doing better than usual.

At that stage, due to the serotonin depletion I was experiencing, I started "gurning". Which is a term MDMA users have for when your mouth and jaw starts going slightly out of control because of seratonin depletion. My jaw (as does happen with this drug) started involuntarily extending out. Like I had an extremely protruding jaw.

And my teeth started chattering. It was a little distressing I guess. But again, MDMA has a way of making everything feel OK.

At about 4 am, I fell asleep. I rolled late, starting around 8pm. And I fell asleep, jaw protruding, teeth chattering and tinnitus absolutely POUNDING. But feeling absolutely ok about it.

It's an absolutely wonderful experience, overall, that I plan on repeating every 1-3 months. And overall, I'd highly favor MDMA over Trobalt a million to one. No regrets at all over the MDMA.
 
#67
grate_biff said:
Me too. Never used them though.

Guess those poor souls are probably buying like crazy now to make it last!

Could this possibly put a speed on for the RL81 or whats its name... the RTG molecule with a fluorid atom attached to it?
Click to expand...
Don't suppose you'd be up for a trade? (is that legal?)
 
#71
dj_newark said:
I rolled on MDMA again last weekend. It was a week earlier than I had planned. You're supposed to wait a month (at least, ideally 1-3 months) between rolls due to the inevitable serotonin depletion.

But I was having a moment of weakness with my tinnitus last weekend. And I was like "eh fuck it!" And dug out my bag of MDMA crystal.

I intended on a bigger dose. And I took an even bigger dose than recommended. About 150mg is right for my body weight. With an added booster dose of about 100mg about an hour and a half in.

But instead I took a 200mg rock and did another 100mg about an hour and a half in.

About 20 minutes into the experience I started feeling warm and a little light headed. And then I'm like "oh. It's starting."

So about a 1/2 hour in, I notice my tinnitus getting louder. The opposite effect of what I was after! However I realized it was an effect of the drug and that helped me ride it out.

But as I started approaching about a hour in it starts building the intensity of my T. And then it kept building. And building. And BUILDING!!! Until I felt my head was about to literally vibrate apart and then explode.

But then....I felt this intensely comforting warmness envelop my body. And in a whooshing sensation the tinnitus receded to the back ground. It was still there and still intense. But the impressive thing is, it was no longer bothering me.

I was accepting the sensation that always bothers and challenges me. My tinnitus is an extremely hard, abrasive sensation that's always there and leaves me depleted and stressed out. But at this point in the experience, it wasn't bothering me in the least.

Instead of tinnitus being a "hard" experience that was difficult to accept. It turned into a "soft" experience, despite the way it sounded. And was completely 100% acceptable. It was absolutely okay to be experiencing the tinnitus at that point.

What I learned about my tinnitus in this session (and to a lesser extent at the previous session at 1/2 this dose) was the extreme pervasiveness of this disorder throughout my brain. Literally every corner of my mind that ai could visit was simply bathed in sound. It was everywhere. There was no escape. I realized I would probabably die this way.

But the most important realization I had during all this, was that it was ok and something that was easy to accept. All was well with the world at that point.

That was at about an hour to an hour and a half in. So at 1.5 hours like I said I took the booster dose. Another 100mg. And at about the 2 hour mark, my perception of the tinnitus was that it was actually getting quieter.

And at about 3 hours in, the tinnitus, while not entirely gone, was so subsided at that point I had to focus on it to even notice. For a while, it was almost entirely gone. An amazing sensation that I wish I had all the time!!!

Then at about 4 hours the tinnitus started coming back. At 5 it was at the usual levels (in other words, pretty bad). But I was still accepting it, and doing better than usual.

At that stage, due to the serotonin depletion I was experiencing, I started "gurning". Which is a term MDMA users have for when your mouth and jaw starts going slightly out of control because of seratonin depletion. My jaw (as does happen with this drug) started involuntarily extending out. Like I had an extremely protruding jaw.

And my teeth started chattering. It was a little distressing I guess. But again, MDMA has a way of making everything feel OK.

At about 4 am, I fell asleep. I rolled late, starting around 8pm. And I fell asleep, jaw protruding, teeth chattering and tinnitus absolutely POUNDING. But feeling absolutely ok about it.

It's an absolutely wonderful experience, overall, that I plan on repeating every 1-3 months. And overall, I'd highly favor MDMA over Trobalt a million to one. No regrets at all over the MDMA.
Click to expand...

Sounds like a blast
 
#73
I asked my doctor if there is a drug with a similar action of Retigabine, so he suggested me Lamotrigine that also can reduce the rate of brain activity. What are you thinking about this?
 
#74
David077 said:
I asked my doctor if there is a drug with a similar action of Retigabine, so he suggested me Lamotrigine that also can reduce the rate of brain activity. What are you thinking about this?
Click to expand...
This is my post of 25.mai 2017 in another tread:

I´ve started Lamotrigine two weeks ago and have only reached 50 mg a day. I have found a very informative site about this drug(see link). I´m taking it mainly to try and calm down my CNS by its glutamergic anti-agonist properties, as I am going through extreme protracted benzo and AD withdrawls(2,5 years in and still struggling with tremors, anxiety and a CNS in high gear along with T and H)

Lamotrigine works by many different channels and according to this site, Potassium channels is one of them, at least it "appears" to be:

"In addition to blocking various voltage-gated sodium and calcium channels, lamotrigine appears to modulate voltage-gated potassium channels."

http://mentalhealthdaily.com/2016/10/04/lamictal-lamotrigine-for-anxiety-disorders/

I can only hope if it calms down my CNS and that it will help alleviate my T and H as well.


Unfortunately i did not do much for me, but I quit two weeks after reaching therapeutic dose of 200 mg.
I had high hopes, when I tried it. It changed the life of my friend suffering from bipolar disorder.
Hopefully you will benefit from it.
I think some have..
 
#75
grate_biff said:
This is my post of 25.mai 2017 in another tread:

I´ve started Lamotrigine two weeks ago and have only reached 50 mg a day. I have found a very informative site about this drug(see link). I´m taking it mainly to try and calm down my CNS by its glutamergic anti-agonist properties, as I am going through extreme protracted benzo and AD withdrawls(2,5 years in and still struggling with tremors, anxiety and a CNS in high gear along with T and H)

Lamotrigine works by many different channels and according to this site, Potassium channels is one of them, at least it "appears" to be:

"In addition to blocking various voltage-gated sodium and calcium channels, lamotrigine appears to modulate voltage-gated potassium channels."

http://mentalhealthdaily.com/2016/10/04/lamictal-lamotrigine-for-anxiety-disorders/

I can only hope if it calms down my CNS and that it will help alleviate my T and H as well.


Unfortunately i did not do much for me, but I quit two weeks after reaching therapeutic dose of 200 mg.
I had high hopes, when I tried it. It changed the life of my friend suffering from bipolar disorder.
Hopefully you will benefit from it.
I think some have..
Click to expand...
Do you mean CNS - Central nervous system? What are symptoms of your CMS?
 
#77
David077 said:
I asked my doctor if there is a drug with a similar action of Retigabine, so he suggested me Lamotrigine that also can reduce the rate of brain activity. What are you thinking about this?
Click to expand...
I've tried both and it's not like trobalt. Won't give you visual snow though.
 
#79
grate_biff said:
Yes- All symptoms linked to stress.
Click to expand...
I think I also had CNS symptoms that was linked to stress, I noticed what was the triggers of the stress that would worsen the symptoms and learned how to ignore them, then my symptoms disappeared.
 
#81
I would pay anything for Trobalt.

Just started a Master's focusing on pharmaceutical drugs and development and got hit with the tinnitus. It wasn't too bad but then bad science and medicine made it get exponentially worse.

If there's any hope of it not being chronic I'd pay handsomely for a chance to be normal so I can continue what I've started. With a new focus on tinnitus. 10000%.
 
#82
Matchbox said:
I would pay anything for Trobalt.
Just started a Master's focusing on pharmaceutical drugs and development and got hit with the tinnitus. It wasn't too bad but then bad science and medicine made it get exponentially worse.

If there's any hope of it not being chronic I'd pay handsomely for a chance to be normal so I can continue what I've started. With a new focus on tinnitus. 10000%.
Click to expand...
I think that they are redesigning Retigabine/Trobalt at the moment to remove the components that make it have nasty side effects.

There might also be some quite positive benefits on tinnitus from some of the other treatments such as synapse treatments, as well as FX-322.
 
#83
Matchbox said:
I would pay anything for Trobalt.

Just started a Master's focusing on pharmaceutical drugs and development and got hit with the tinnitus. It wasn't too bad but then bad science and medicine made it get exponentially worse.

If there's any hope of it not being chronic I'd pay handsomely for a chance to be normal so I can continue what I've started. With a new focus on tinnitus. 10000%.
Click to expand...
Trobalt caused permanent visual snow for many of the people that used it to quieten their tinnitus.
Fortunately ➡️ Professor Thanos Tzounopoulos is in the process of making a reformulated version of Retigabine that is 15x more potent and targets tinnitus without the adverse side effects.

And of course, we have biotechs like Frequency Therapeutics and Otonomy looking to regenerate the cochlea, as well as Sound Pharmaceuticals who are in stage 3 clinical trials for a Menière's drug that's been shown to reduce cochlear inflammation and help with tinnitus/hyperacusis in mice.

My point is that there's help coming very soon, just stick it out for a few more years and I think there's a high chance at least one of these companies will work; FX-322 is already effective for sensorineural hearing loss.
 
#84
weab00 said:
Trobalt caused permanent visual snow for many of the people that used it to quieten their tinnitus.
Fortunately ➡️ Professor Thanos Tzounopoulos is in the process of making a reformulated version of Retigabine that is 15x more potent and targets tinnitus without the adverse side effects.

And of course, we have biotechs like Frequency Therapeutics and Otonomy looking to regenerate the cochlea, as well as Sound Pharmaceuticals who are in stage 3 clinical trials for a Menière's drug that's been shown to reduce cochlear inflammation and help with tinnitus/hyperacusis in mice.

My point is that there's help coming very soon, just stick it out for a few more years and I think there's a high chance at least one of these companies will work; FX-322 is already effective for sensorineural hearing loss.
Click to expand...
There is also Xenon Pharmaceuticals which already has various reformulations of Retigabine in clinical trials (in Phase 2) - their drugs are indicated for epilepsy but they recently stated they will be exploring their use in hearing disorders.
 
#85
weab00 said:
Trobalt caused permanent visual snow for many of the people that used it to quieten their tinnitus.
Fortunately ➡️ Professor Thanos Tzounopoulos is in the process of making a reformulated version of Retigabine that is 15x more potent and targets tinnitus without the adverse side effects.

And of course, we have biotechs like Frequency Therapeutics and Otonomy looking to regenerate the cochlea, as well as Sound Pharmaceuticals who are in stage 3 clinical trials for a Menière's drug that's been shown to reduce cochlear inflammation and help with tinnitus/hyperacusis in mice.

My point is that there's help coming very soon, just stick it out for a few more years and I think there's a high chance at least one of these companies will work; FX-322 is already effective for sensorineural hearing loss.
Click to expand...
FX-322 will help tinnitus too if those anecdotal reports are to be believed and so might some of those other medicines. At this stage I think that as annoying as it is, we will see some relief soon.
 
#86
tommyd87 said:
FX-322 will help tinnitus too if those anecdotal reports are to be believed and so might some of those other medicines. At this stage I think that as annoying as it is, we will see some relief soon.
Click to expand...
Seems like we are agonizingly close to an effective remedy for tinnitus/hyperacusis. Now it's the waiting game, hoping for 2023.
 

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