Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

@Christian78

So sorry to hear that, I know it is very hard to do at this stage but please try and taper off completely from Trobalt to see if there is any improvement. You should take this to get better, not to get worse.

I hope you get better soon.

There is NO improvement (improvement was first 4 months when t went to 1/10), i know while on trobalt my tinnitus got worse few times. Point now it is so bad that i can not survive without it, i can not sleep, and if i don't sleep i get suicidal very fast.

 

[LetyO]

Unfortuately I metabolize this medication very rapidly which my necessitate increasing the dose or dose frequency in my case. I took 350 mg back to back for the first time last night. No side effects but I did experience a near elimination of my T for about an hour. I am looking at ways to decrease metabolism of Trobalt in the liver (N-glucuronidation and N-acetylation). There may be ways to compete with these pathways using other medications in conjunction with Trobalt. This may help to decrease dosage. Its metabolites are primarily excreted in the urine so decreasing renal clearance won't help. Theoretically Gabapentin should not work although it can be effective in the treatment of seizures. It is similar to GABA but does not cause an increase in uptake in the CNS. The only thing than is known for sure is how these medications are metabolized. As to its effect on the CNS I feel that it is all supposition. We can only go by its effects on those using it and treat each case on an individual basis. We are not all the same. I was being lazy before hoping that by taking this "magical" medication I might find some relief. If I discover anything mind-bending I will let you know

Thank you @Juan Carlos for your summary. It definitely helped to clarify a few things for me. I wish you the best

 

[LetyO]

@Christian78, if you find Trobalt has made your T worse please discontinue taking. I don't know what other medications you are taking but maybe they are causing some kind of adverse reaction. I think of you often and you are in my prayers.

 

[linearb]

There is NO improvement (improvement was first 4 months when t went to 1/10), i know while on trobalt my tinnitus got worse few times. Point now it is so bad that i can not survive without it, i can not sleep, and if i don't sleep i get suicidal very fast.

These are, literally, symptoms of drug addiction.

We know that RTG, among other things, is a positive allosteric modulator of GABAa; this means that it has the potential to be addictive in the same what that benzodiazepines and alcohol are. "Discontinuation effects" of psychiatrics drugs, are withdrawal syndromes.

Not sleeping won't kill you or make you go psychotic. I had the same anxiety when I experienced protracted insomnia following benzodiazepine withdrawal. It fucking sucked, but it didn't do anything bad to me, ultimately it was just an inconvenience.

 

[undecided]

Unfortuately I metabolize this medication very rapidly which my necessitate increasing the dose or dose frequency in my case. I took 350 mg back to back for the first time last night. No side effects but I did experience a near elimination of my T for about an hour.

The temporary thing has happened to a lot of us, myself included.
It doesn't necessarily mean that you metabolize the medication, its still in the bloodstream so taking back to back doses is kinda useless.

I am looking at ways to decrease metabolism of Trobalt in the liver (N-glucuronidation and N-acetylation). There may be ways to compete with these pathways using other medications in conjunction with Trobalt. This may help to decrease dosage.

Well since RTG is GABAergic drug (some literature seems to indicate that), you can try the usual stuff that prevents benzos from losing their effect:

1) grapefruit juice
2) cimetidine (usually over the counter med)
3) a beta blocker to slow down your entire system

(i've tried all the above, nothing worked - but i did not experiment extensively).
Playing around with RTG and different types of food seemed to work best, weirdly enough eating tons of cookies made RTG last longer for me. I believe someone else has mentioned milk or yogurt.
Taking it on an empty stomach was the best for the drunk effect but not for duration.

Its metabolites are primarily excreted in the urine so decreasing renal clearance won't help. Theoretically Gabapentin should not work although it can be effective in the treatment of seizures. It is similar to GABA but does not cause an increase in uptake in the CNS. The only thing than is known for sure is how these medications are metabolized.

Gabapentin is a calcium channel blocker and does not have much to do with gaba even though Pfizer is trying to make it look like a legal benzo.
It has been reported as being ototoxic (for some people, others have found it beneficial combined with clonazepam).

 

[Christian78]

@Christian78, if you find Trobalt has made your T worse please discontinue taking. I don't know what other medications you are taking but maybe they are causing some kind of adverse reaction. I think of you often and you are in my prayers.

I think stress and something else made it worse 7 times... it has worsenings before i used trobalt... my tinnitus is progresive and i will not last long as they are siginificant worsening, but i hope i last as long as possible.

 

[undecided]

I think stress and something else made it worse 7 times... it has worsenings before i used trobalt... my tinnitus is progresive and i will not last long as they are siginificant worsening, but i hope i last as long as possible.

If you can't find the tinnitus, and it makes you suicidal, fight the symptoms for as long as you can.
Get off the rtg, its pointless.

Remeron (30mg at night for sleep) + and a low dose venlafaxine ~50mg twice, in the morning and midday.
Three low doses of your favorite benzo during the day.
Talk about it with your neurologist, you got nothing to lose.

A couple of weeks on that shit and maybe you'll start feeling better.
Venlafaxine could be a bit of a problem but hell, you sound like you're really struggling. If you feel it might be ototoxic, switch to a low dose of another snri.

 

[LetyO]

The temporary thing has happened to a lot of us, myself included.
It doesn't necessarily mean that you metabolize the medication, its still in the bloodstream so taking back to back doses is kinda useless.

What is curious in my case is that I have not consistently experienced the drunk effect (only twice with or without food) and it happened several days apart. I can't explain why this occurs. I agree that it might be affected by what we eat. Maybe a change in the blood pH or possibly sugars increase its effectiveness somehow. It is known that people metabolize medications at different rates. There has been discussion in the medical field about tayloring medications per person. Once the medication is metabolized it sits useless in the blood stream unless it is the metabolites that are causing some of the side effects. These metabolites are excreted in the urine. You can increase clearence by taking a diuretic such as coffee or just drink lots of water. Just curious @undecided, what is your background? You did not post anything in your profile.

 

[LetyO]

Correction: Trobalt and its metabolites are actively secreted in the urine. Decreasing renal clearance may increase blood levels.

 

[SoulStation]

Venlafaxine could be a bit of a problem but hell, you sound like you're really struggling. If you feel it might be ototoxic, switch to a low dose of another snri.

Do you think venlafaxine is less ototoxic than other ADs?

 

[Aussie Lea]

Do you think venlafaxine is less ototoxic than other ADs?

What ADs are ototoxic? What do you base this claim on?

I'd say most ADs are not ototoxic, if any.

 

[Juan Carlos]

Hi guys, yesterday at 8pm i took 300mg trobalt plus 100mg Gabapentine, definetly was not better than Trobalt alone. Maybe I had more spikes than usual, so i also think that Gabapentine could be ototoxic. When I took Gabapentine alone also felt T little higher. So well, I have no idea how @preslys was cured with this mix
Also i have to say that this morning it was quite low, silence on left ear and low pure tone in right ear
I didn't take exactly how he told me to take: he said take 200mg Gabapentine+200 Troabalt before sleep.
So hope to get more feedback from other users to give another try, at least Gbptn didnt make any permanent raise

Im interested in what @LetyO said about renal function, if someone knows how to slow the renal function to make trobalt effect last longer post here please

I was thinking in the mix trobalt + Cinnarizine (this one is NOT ototoxic), its a Calcium channel bloquer, any expert about this thinks is a good idea? someone tried this?

 

[undecided]

Do you think venlafaxine is less ototoxic than other ADs?

There is a rather gigantic book:

Ototoxic Drugs Exposed (3rd Edition): The Shocking Truth About Prescription Drugs, Medications, Chemicals and Herbals That Can (and Do) Damage Our Ears

it has been posted before somewhere in the forum (in .pdf form) and it lists most, if not all, of antidepressants as ototoxic.
Actually it lists a worryingly large amount of common meds as ototoxic.

I don't know what to make of it, the fact is that there is not sufficient testing for drugs when it comes to side effects. There has not been consistent testing even for common substances such as paracetamol (audiograms up to 20KHz, vestibular tests etc) and that is the only fact.

So there is no way to answer your question. Some people get tinnitus from small doses of aspirin, some eat benzos by the dozen and get nothing. I've been on the so-called "California rocket fuel" cocktail, which includes venlafaxine, under doctor's supervision for a couple of months and felt better. I think @Telis has mentioned venlafaxine made him worse.
So pick your poison. I mean, is there any conclusive data that retigabine doesn't cause hearing loss itself after prolonged use..?

The only way to be sure it to take nothing. Just eat as healthy as you can and sometimes indulge yourself with junk food or whatever. If you can get by like that then great. But if you are going depressed or even suicidal, you got to take something to even you out.

Just curious @undecided, what is your background? You did not post anything in your profile.

I don't have any kind of medical background whatsoever if that's what you're asking.
Just personal research.
However after one and a half year with tinnitus, I could become an excellent ENT. "Nothing you can do about it, here's a nasal spray, come back for a re-evaluation in 15 days, that'd be 100$ teeheehee".

 

[Martin69]

As a sidenote , my good days are the ca 4 khz T , 80% of the time its the bad kind , ca17khz and incredible head buzzz.
I can only hope that Trobalt works on that as well, in fact the physical head buzz is the absolute worst.

Same here. 16+ kHz piercing in my head.
I will get another box of Trobalt tomorrow (84 x 200 mg).
I also still have 100 mg pills here.
Still don't know what to do with it and if it would help somehow.
I do not plan at the moment taking something like 600 or 800 mg per day.
Maybe I will start taking 200 mg on occasion.
Honestly my impression is that Trobalt can lower T. I see people here with a 3 going to 2 or from 4 going to 0. But what about going from 10 to 0?

 

[papu]

I was thinking in the mix trobalt + Cinnarizine (this one is NOT ototoxic), its a Calcium channel bloquer, any expert about this thinks is a good idea? someone tried this?

Apart from trobalt, stugeron (cinnarizine) is the only drug i have felt that actually lower my tinnitus (although not as much as trobalt). I try to combine both at some point but made me very sleepy next day so i have not given it a proper chance. For now i will only stick with trobalt for probably two more month, but you are more than welcome to try an report back since as you said it is defineatly not ototoxic.

 

[LetyO]

Im interested in what @LetyO said about renal function, if someone knows how to slow the renal function to make trobalt effect last longer post here please

I am looking into it. I will be speaking to a pharmacist regarding this (they have a better understanding of the pharmokinetics) and I have an appointment with a neurologist in a few weeks. Cimetidine is reported to reduce renal clearance of some medications but it can have some bad side effects. Before trying to decrease renal clearance you must make sure renal function is normal since it can raise creatinine levels. I did notice when I drank less water the other day Trobalt seemed to have more of an effect at a lower dose (150mg from 300mg). I've never had any side effects at 150mg so this was new to me. I'm using less until I get my next refill. I am going to get full blood work and UA to evaluate my renal and hepatic function. I will start checking my urine concentration daily so I can see how this correlates with the effects of the medicine. Let you know what I find out.

 

[lapidus]

So this was published yesterday:
http://medicalxpress.com/news/2015-11-nerve-cells-brain-ear.html

Here is some more info on this paper and it mentions retigabine:
http://www.pnas.org/content/early/2015/11/05/1515228112


"In the mammalian cochlea, acoustic information is carried to the brain by the predominant (95%) large-diameter, myelinated type I afferents, each of which is postsynaptic to a single inner hair cell. The remaining thin, unmyelinated type II afferents extend hundreds of microns along the cochlear duct to contact many outer hair cells. Despite this extensive arbor, type II afferents are weakly activated by outer hair cell transmitter release and are insensitive to sound. Intriguingly, type II afferents remain intact in damaged regions of the cochlea. Here, we show that type II afferents are activated when outer hair cells are damaged. This response depends on both ionotropic (P2X) and metabotropic (P2Y) purinergic receptors, binding ATP released from nearby supporting cells in response to hair cell damage. Selective activation of P2Y receptors increased type II afferent excitability by the closure of KCNQ-type potassium channels, a potential mechanism for the painful hypersensitivity (that we term "noxacusis" to distinguish from hyperacusis without pain) that can accompany hearing loss. Exposure to the KCNQ channel activator retigabine suppressed the type II fiber's response to hair cell damage. Type II afferents may be the cochlea's nociceptors, prompting avoidance of further damage to the irreparable inner ear."

 

[Albertus]

That is the reason because RTG cure H.

 

[Christian78]

If you can't find the tinnitus, and it makes you suicidal, fight the symptoms for as long as you can.
Get off the rtg, its pointless.

Remeron (30mg at night for sleep) + and a low dose venlafaxine ~50mg twice, in the morning and midday.
Three low doses of your favorite benzo during the day.
Talk about it with your neurologist, you got nothing to lose.

A couple of weeks on that shit and maybe you'll start feeling better.
Venlafaxine could be a bit of a problem but hell, you sound like you're really struggling. If you feel it might be ototoxic, switch to a low dose of another snri.

how well you explained it , really well, just you forgot that because of rtg my dr doctor, i sleep.

talk with neurologist, i suppose you have one on short leash that you can just jump in his office???

and start giving me medication.!!! how rude you are!

I wish you to get my tinnitus on 3 months, so i see would you bee alive at all!!! Just nice Christmas wish for you!

That is the reason because RTG cure H.

RTG did not cure my H

 

[Albertus]

how well you explained it , really well, just you forgot that because of rtg my dr doctor, i sleep.

talk with neurologist, i suppose you have one on short leash that you can just jump in his office???

and start giving me medication.!!! how rude you are!

I wish you to get my tinnitus on 3 months, so i see would you bee alive at all!!! Just nice Christmas wish for you!


RTG did not cure my H

You still have H ever if you still taking antidepressants, all Ad's are a lot ototoxic.

 

[attheedgeofscience]

So... I have joined the folks trialing Trobalt. I started Sunday with the recommended 300mg / day as starting dose. The recommended tapering is a maximum 0f 150mg / week. I will however be following a fast taper: I am already at 600mg/day and I can confirm that Trobalt does indeed seem to do "something" (not very specific - I know, but that's the best way I can describe it).

I am pending feedback from a professor of pharmacology (about the tapering). Essentially, I have asked this person why there is a tapering protocol for Trobalt when there is none for the chemically similar Flupirtine. Unless, there is a good reason not to, I will hit 900mg/day or 1200mg/day fairly soon.

Side-effects seem pretty tolerable: only real side-effect at this point is drowsiness and bizarre dreams.

Tinnitus annoyance in April 2013 before starting LLLT + stem cells + Flupirtine = 8-9/10.

Tinnitus annoyance before starting Trobalt (i.e. this Saturday) = 3/10.

attheedgeofscience
11/NOV/2013

 

[Gill Hayes]

attheedgeofscience
Your post above is dated 11/NOV/2013, I'm assuming this is a typo and should be 2015 ?

 

[attheedgeofscience]

attheedgeofscience
Your post above is dated 11/NOV/2013, I'm assuming this is a typo and should be 2015 ?

Just checking if members are paying attention, haha...

No... that would be one of the side-effects of Trobalt. A person tends to make x 5 more typos when Trobalt. Same deal with Flupirtine...

 

[Gill Hayes]

Phew ! Great that you're trialing Trobalt - good luck.

 

[undecided]

how well you explained it , really well, just you forgot that because of rtg my dr doctor, i sleep.

talk with neurologist, i suppose you have one on short leash that you can just jump in his office???

and start giving me medication.!!! how rude you are!

I wish you to get my tinnitus on 3 months, so i see would you bee alive at all!!! Just nice Christmas wish for you!


RTG did not cure my H

Maybe i already have your tinnitus, you never know.
I was merely suggesting that rtg is no longer beneficial for you. But if it helps you sleep and sleep is what you need, then its all good.
Merry christmas to you as well Christian, sincerely.

 

[Juan Carlos]

Hey, did another trial yesterday, this time 40mg Cinnarizine + 100mg Trobalt, it seemed to potentiate Trobalt effect, as i felt like 200 trobalt. Just before going to sleep took another 100mg trobalt
This morning i feel quite tired. helped to sleep very fast. As cinnarizine is not ototoxic and quite safe maybe i will do this mix again.
this morning also quite low, almost not existent in left ear

 

[RaZaH]

600mg and I would be hi as kite, unable to write ,unable to think...possibly unable to hear my T
Still waiting on my prescription

 

[Bart]

...possibly unable to hear my T

Just keep that in mind...

600mg and I would be hi as kite

And take that as an added bonus

 

[Yo-Han]

Trobalt is not a psychiatric drug.

A bit off topic but ...
Depends on how you look at it
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1201637/

Paragraph 2 form the abstract says it all! I rest my case.

Antiepileptic drugs (AEDs) are psychotropic agents; that is, they act on the mind and can positively or negatively influence behavior. This result is expected, given their mechanisms of action, which are to alter ion channel and neurotransmitter system functions and, thereby, modulate the electrochemical systems that underlie behavior. Behavioral effects (e.g., cognitive and mood) associated with AEDs are complex and can vary dramatically between patients. It is currently not possible to predict which patient with epilepsy will tolerate an AED and which one will develop adverse, as opposed to positive, psychotropic effects.

@ everyone
I'd like to underline linearb 's and undecided's posts. The brain gets used to benzo's after months-years (they are notorious for that) and probably to RTG and many EAD's and AD's too. But less aggressive then benzo's in the last categories off drugs. But that's no reason to deem many of these non benzo drugs very safe in that regard to use for months and months without possible withdrawel effects. We might have all different neurochemistry balances, same for immune and hormonal system balances, our gut health balance. Don't thread with all these drugs lightely. Not one AED or AD or Benzo.

 

[attheedgeofscience]

Paragraph 2 form the abstract says it all! I rest my case.

Well, in that case, and by your definition and standards, Codeine, Morphine and Tramadol (and many other pharmaceuticals) would be classified as psychiatric drugs. Indeed, they do impact the CNS, but clearly that is not their primary purpose.

Trobalt is used within the field of neurology; not psychiatry.

I hate the Internet sometimes.