Uh... I sat in an audiologist booth and didn't need to do a loudness match because I heard nothing... while also wearing noise canceling headphones.
Retigabine (Trobalt, Potiga) — General Discussion
- Thread starter Mpt
- Start date
Uh... I sat in an audiologist booth and didn't need to do a loudness match because I heard nothing... while also wearing noise canceling headphones.
MemberProblem is @Mpt , I'm pretty sure I saw a post from the good doc that more or less said your case was probably coincidental and your T was probably going to go by itself anyway or that we could not say otherwise,(words to that effect anyway).
So unfortunately we would probably need quite a few more successes to sway the unbelievers!
Member
Hey, guys! I'm experimenting with the dosage of trobalt. I'm on 600mg twice a day now...But hopefully, I can go to 800 once a day. I'm about a 2-3 tinnitus now. Which is a massive improvement for me. H has gone down from an 8 to a 1-2. I say crank up the dosage. Anyway, one can safely take 1,200mg in one sitting, so maybe, just maybe, if I get to that dose and keep it there for one month tinnitus will be gone.
yeah @Christian78 , I think we are the only ones experiencing those effects. Are others so cold-hearted?I must say your text sent some tears on my eyes... i felt the same as you, i looked my parrots, and birds, and colors of the fall, i have thousand of hugs. Only if the trobalt does not that expiry date on tinnitus, i lasted 4 months, and what i seen from all starters i passed that all, and increase of dosage. Pitty is only hyperacusis becomes stronger after stopping trobalt. Also my lowering of trobalt create short qi hear interval or you well know it better than me so my blood pressure crushed from 120 to 85, mostly 95-100 for now, it has tendency to fall. I been and left my blood test, more over all side effects are wearing off even that i am now on 250 mg, and should go to 200mg...
All those emotion i had, and i helped so many elderly people on and off buss that they told me i am definitely not a sweden, they never do it, they just not want to intervene..
If Gods has a mercy and i get off trobalt and start again, and we all get some positive results for autifony it would be great, and then we can give new tack to dr large to create happy drug so we all be kind to each other and stop meaningless war and religion, and openly love each other.... we have such potential and it is strange that one drug unlocks it!
Somehow to smuggle some retigabine in Siria? put in the water?what you think don juan?
hehe so I see the effect of "high exposure to say yes to every question" hit hard on you. It would be wonderful to have a joy-drug with those effects, it would be perfect drug with no hang over, no stomach problems, nothing bad, just open your mind and be yourself with the erradication of all prejudices.
now about H you made me a bit scared.
So @Zimichael had H when starting Trobalt, this is the most weird case
For most of us, RTG Erradicates H when taking it. Any case of total erradication after withdrawal ??
For you, on withdrawal of Trobalt, the H appears (this seems more logical but very umpleasant)
I think no one else reported increasing of H on taper off, hope is gets normalized for you. Did you consider taking Keppra for H, as for Viking it totally erradicated its a very safe drug
Seems like all efects reverse on withdrawal like QT interval decreases
Hey danny, dont play with fire. Where did you get that is safe to take 1200 at once ?????
RTG increases the QT interval, after a dose i feel my heartbeats stronger. Troablt is made to be taken every 8 hours, not more, why are you changing the achedule ?? if you wanna take 1200, take 400 TID. On that way you will have more ups and downs, less stable drug in you blood, wich will probably work worse
I'm glad that you are happy for @Mpt ,
But, I seem to recall in quite a few of your post's you saying that you are not bothered by your Tinnitus at all and that TRT has taught you to forget about it 99% of the time!
You have even said that you don't suffer from it anymore because of TRT!
Why would you be envious of someone who has no T?
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Mpt, thanks for taking the time to check in with the forum every once in a while.
If you could, would you mind doing a final PROGRESS FORM with all the basic details (eg. "current tinnitus severity"). Could you in the field called "Changes in tinnitus" write any changes that there might have been since your last PROGRESS FORM (I guess there aren't any since it is now a "0" or a "1" in intensity). Somewhere within this field (ie. "Changes in tinnitus" could you please write "**PATIENT ZERO**" and below that give an account of your tapering up protocol, your treatment duration and dosage (= 900mg/day, I believe), and the tapering down protocol you used (incl. the dosage for each interval of the tapering).
Could you also please fill out the side effects that you are currently having (if any); if none, please write that you seem to be free of any permanent side-effects (if that is the case). Below that, please, if you could, write "**PATIENT ZERO**" and provide an exhaustive account of any side-effects you had during your treatment (I believe you mainly had a feeling of sluggishness after meals, for instance); but even if mild, please provide a full account of any side-effects you had during your full treatment duration and your opinion as to whether those were dosage related. Thanks.
I may need to supply you with a questionnaire at some point (if you would be willing to complete it). I may also need to request a few additional "things" from you (to be decided). Again, if you would be willing to supply it...
The reason I need the above material is because of the treatment success that you have obviously had with Trobalt (incl. tinnitus not returning after tapering off). It would be helpful to try to identify the underlying factors behind this (compared with others who have attempted the treatment). For instance, I believe you used a different tapering up protocol than that which would be indicated for epilepsy patients, and this could be an important underlying factor (along with your etiology ie. ear syringing). I realize you may have given a description of the above already - in parts (via posts/updates) - but please be kind to supply it in full (and in one place) one more time. Thanks.
Have a good x'mas!
@Dr. Nagler As you opinion seems to differ from to majority of us, specially the ones who are taking RTG.I'm glad that you are happy for @Mpt ,
But, I seem to recall in quite a few of your post's you saying that you are not bothered by your Tinnitus at all and that TRT has taught you to forget about it 99% of the time!
You have even said that you don't suffer from it anymore because of TRT!
Why would you be envious of someone who has no T?
Did you consider to test just one dose in-person of RTG just to be more sure of its effect ? that would clear some questions for all you and us. You could be more sure of the kind of effect is has (just perception or not)
-You could also do a test with a masking device and test wich level to mask you need after and before the dose
-You could also make an audiogram test, specially on your T-Frequency to see if it has improved
It needs just a single dose of let say 300mg, as all of us felt improvement with this dose even at first time
It will take you few hours. Get the pills, take them, wait 1 hour for max effect, and another hour to do the tests (masking devide, audiogram and whatever you consider suitable). After few hours more the effect will be totally gone, and after 8h there wont be almost any RTG on your blood.
just a suggestion...
Because he knows he can still hear his tinnitus...I mean, trobalt truly lowers tinnitus whereas TRT just trains you to cope. I say team trobalt! No team TRT for me lolI'm glad that you are happy for @Mpt ,
But, I seem to recall in quite a few of your post's you saying that you are not bothered by your Tinnitus at all and that TRT has taught you to forget about it 99% of the time!
You have even said that you don't suffer from it anymore because of TRT!
Why would you be envious of someone who has no T?
Great post @Dr. Nagler I have goggled I took xyz and the side effect was my T went thousands of times, and nothing apart from this thread pops up. The side effects for me are just to risky to take on. And I have tried most things over the years. I currently have great relieve with Nicotinamide Riboside and Neuromodulation. Both with no side effects. And my sleeping, mood swigs, stress and all round well being is great
Merry Christmas 
It's totally fine. I won't be on this long anyway, just 3 months in total or 4 as a max.
I am aware of my tinnitus 5% of the time - whereas I used to be aware of it 99% of the time. I attribute that to T.
During the 5% of the time that I am aware of my tinnitus, I can be distracted by it but I am never distressed by it - whereas I used to be incredibly distressed by it 100% of the time. I attribute that to TRT.
I have tinnitus, but I no longer suffer from tinnitus. I attribute that to TRT.
But everything else being equal I'd prefer not to have it at all, which is why I am just a little envious of Mpt.
Dr. Stephen Nagler
@Danny Boy or any of the trialees, does your T start creeping back up after a dose say when you are nearing your next dose? I think that's what most others are reporting.
Why don't you give trobalt a try, just to see if it works for you? I mean, that way, you can give evidence and help us, get this drug to trial...I know that it'll hurt your TRT business, but let's face it, people are suffering, committing, suicide. We need to save life's...Plus if TRT fails, which it can, we need a backup plan.
@Juan Carlos posted:
"Dr. Nagler As you opinion seems to differ from to majority of us, specially the ones who are taking RTG.
Did you consider to test just one dose in-person of RTG just to be more sure of its effect ? that would clear some questions for all you and us. You could be more sure of the kind of effect is has (just perception or not)
-You could also do a test with a masking device and test wich level to mask you need after and before the dose
-You could also make an audiogram test, specially on your T-Frequency to see if it has improved
It needs just a single dose of let say 300mg, as all of us felt improvement with this dose even at first time
It will take you few hours. Get the pills, take them, wait 1 hour for max effect, and another hour to do the tests (masking devide, audiogram and whatever you consider suitable). After few hours more the effect will be totally gone, and after 8h there wont be almost any RTG on your blood.
just a suggestion..."
.............
I am willing to assist in writing a letter to ATA encouraging them to fund Retigabine research.
I am willing to speak with my own patients' primary care physicians about prescribing Retigabine for them if my patients wish.
I am willing to sincerely and unconditionally share in the joy of those on this board who find tinnitus relief.
But I am not willing to be a human guinea pig.
Dr. Stephen Nagler
"Dr. Nagler As you opinion seems to differ from to majority of us, specially the ones who are taking RTG.
Did you consider to test just one dose in-person of RTG just to be more sure of its effect ? that would clear some questions for all you and us. You could be more sure of the kind of effect is has (just perception or not)
-You could also do a test with a masking device and test wich level to mask you need after and before the dose
-You could also make an audiogram test, specially on your T-Frequency to see if it has improved
It needs just a single dose of let say 300mg, as all of us felt improvement with this dose even at first time
It will take you few hours. Get the pills, take them, wait 1 hour for max effect, and another hour to do the tests (masking devide, audiogram and whatever you consider suitable). After few hours more the effect will be totally gone, and after 8h there wont be almost any RTG on your blood.
just a suggestion..."
.............
I am willing to assist in writing a letter to ATA encouraging them to fund Retigabine research.
I am willing to speak with my own patients' primary care physicians about prescribing Retigabine for them if my patients wish.
I am willing to sincerely and unconditionally share in the joy of those on this board who find tinnitus relief.
But I am not willing to be a human guinea pig.
Dr. Stephen Nagler
So if you miss a dose your T is stable at the lower values where you described it as a 1 recently?
Yep. I'm on a higher dose, than most people though, so maybe that's why. I only have two doses, which are higher than most people, so I attribute that, to that really.
Hi everybody, I have been following this thread passively for quite some time now and as everybody else I admit to being quite intrigued by this experiment to a point where I consider trying this myself.
However I have one essential question: how do you truly specify your t severity evaluation (x/10) in order to document your progress? Because of the T perception being such a subjective and bizarre phenomenon mine can vary from a 3/10 up to a 9/10 during the day. Sometimes it is maskeable, sometimes it isn't, always at its worst upon waking up. And a comparison to masking white noise volume doesn't really work either since it is sometimes more reactive to external stimuli than other times.
The one and only true test for me is closing my ears and listening to the t in a sound poor environment. Strangely enough, then it seems to be more or less always of the same volume.
I might want to add that my t is billateral and not noise induced, making it more of a head noise which is another indication to me that this is not an ENT but rather a CNS phenomenon.
However I have one essential question: how do you truly specify your t severity evaluation (x/10) in order to document your progress? Because of the T perception being such a subjective and bizarre phenomenon mine can vary from a 3/10 up to a 9/10 during the day. Sometimes it is maskeable, sometimes it isn't, always at its worst upon waking up. And a comparison to masking white noise volume doesn't really work either since it is sometimes more reactive to external stimuli than other times.
The one and only true test for me is closing my ears and listening to the t in a sound poor environment. Strangely enough, then it seems to be more or less always of the same volume.
I might want to add that my t is billateral and not noise induced, making it more of a head noise which is another indication to me that this is not an ENT but rather a CNS phenomenon.
Will you give Autifony's drug a try when that comes out and is tested and on the market?
If I were in your shoes I'd go this drug a try, at the very least. The only issue is, getting this drug...It's harder to obtain than street drugs, heroin etc...So that's the task you'd need to overcome first. And Mine doesn't go to 3-10, mine was stable and really annoying, plus I had H...I know this drug works as my H is practically gone and my tinnitus is far lower. This drug has saved my life and trust me, if it keeps my H away when I'm not on this drug, then I don't care about my tinnitus, H was far worse. And mine wasn't maskable, now it is. Good luck on your journey mate and I wish you well.
Tinnitus describes the subjective experience of an auditory phantom sound; decades of studies have established a number of putative neural correlate for this subjective pathological phenom- enon – among one, namely, the increase of the spontaneous firing rate and spatial coordination in the auditory cortex (Roberts et al., 2010). As an emergent property of aberrant cortical activity, tinnitus, thus, is ideally characterized by studying neuronal net- works. Electrophysiological measurement of auditory cortical activity using the microelectrode array is a suitable platform in an attempt to elucidate this phenomenon. In our previous study, we used the pro-convulsant pentylenetetrazol to induce tinnitus- like activity (or a cell culture correlate of tinnitus; Wu et al., 2011). The use of pentylenetetrazol for mimicking tinnitus was a novel approach and unprecedented. Firstly, other conventional tinnitus inducers such as salicylate or quinine had a postulated convergent mechanism that either directly or indirectly targeted the GABAer- gic inhibitory interneuron of the afferent pathway in the auditory cortex, resulting in disrupted plasticity of excitation-inhibition and resulting hyperactivity (Noreña et al., 2010). In addition, it should be noted that age-related tinnitus co-exhibited decreased inhibi- tory neurotransmission in the auditory cortex and along the auditory subcortical pathway (Caspary et al., 2013; Richardson et al., 2012). We used a simplified cortical disinhibition model with the GABAA antagonist pentylenetetrazol. The pentylenetetrazol model of epilepsy – pathology of which also stemmed from perhaps maladaptive plasticity and hyperactivity (Scharfman, 2002) – has been well-established in the literature, and this helps to facilitate the application, screening of, and re-purposing of anti- epileptic drugs for tinnitus management.
Li et al. (2013) demonstrated the role of the KV7 channels in the induction of tinnitus in the mouse dorsal cochlear nucleus model, and showed that retigabine may prevent the development of tinnitus. We estimated the therapeutic potential of Kþ channel openers in suppressing tinnitus-like activity by quantifying the responses in the auditory cortical networks. Retigabine had the highest therapeutic potential, with a therapeutic concentration of 7.4 mM – a concentration at which counteraction against induced- hyperactivity were effective – followed by NS1619 (15.2 mM), flupir- tine (23.3 mM), and isopimaric acid (30.0 mM). These values were well within the range of their effective concentrations against epilepsy (3–100 mM; Kobayashi et al., 2008), thus, possible off-label treatment for tinnitus is plausible (and safe). Clinical studies had calculated the free brain concentration of retigabine taken at 1200 mg/day to be
around 2.0 mM (Large et al., 2012) – a dose equivalent to that used in an animal model of pentylenetetrazol-induced seizure (Rostock et al., 1996). The other three compounds have not undergone pharmaco- kinetic studies. However, as their EC50 and therapeutic concentration values are almost comparable to retigabine, it is reasonable to assume that the potential effect of tinnitus-like activity suppression may be observed at a similar dose. Nevertheless, a controlled clinical trial of these other three drugs is warranted. As interest in this new class of drugs have gained traction, we surmise that the results of this study may serve as the basis for future research that might explore the pre-clinical and clinical effectiveness of Kþ channel openers for the treatment of tinnitus.
Li et al. (2013) demonstrated the role of the KV7 channels in the induction of tinnitus in the mouse dorsal cochlear nucleus model, and showed that retigabine may prevent the development of tinnitus. We estimated the therapeutic potential of Kþ channel openers in suppressing tinnitus-like activity by quantifying the responses in the auditory cortical networks. Retigabine had the highest therapeutic potential, with a therapeutic concentration of 7.4 mM – a concentration at which counteraction against induced- hyperactivity were effective – followed by NS1619 (15.2 mM), flupir- tine (23.3 mM), and isopimaric acid (30.0 mM). These values were well within the range of their effective concentrations against epilepsy (3–100 mM; Kobayashi et al., 2008), thus, possible off-label treatment for tinnitus is plausible (and safe). Clinical studies had calculated the free brain concentration of retigabine taken at 1200 mg/day to be
around 2.0 mM (Large et al., 2012) – a dose equivalent to that used in an animal model of pentylenetetrazol-induced seizure (Rostock et al., 1996). The other three compounds have not undergone pharmaco- kinetic studies. However, as their EC50 and therapeutic concentration values are almost comparable to retigabine, it is reasonable to assume that the potential effect of tinnitus-like activity suppression may be observed at a similar dose. Nevertheless, a controlled clinical trial of these other three drugs is warranted. As interest in this new class of drugs have gained traction, we surmise that the results of this study may serve as the basis for future research that might explore the pre-clinical and clinical effectiveness of Kþ channel openers for the treatment of tinnitus.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I started ca 10th august.
My t returned on 600mg/d in late seprember,
I went up to 750/g it was there on 1-2-3,
In november my t became loud and loud more and more, and side effects became harder, i even try 450 a dosage but no reaction tinnitus.
It lasted to 10 december. T became almost a normal (usual then before starting but not so hard ca 6/10)
In same days i noticed that my ventilator from a computer is very hard to tolerate ( i never before starting trobalt had problem to tolerate those sounds, like small hissing sounds, heating element, i got 100% i ma sure much much worse hyperacusis.
I was on 900 until 18 december and then i decided to go down.
Believe or don't believe, trust or not, other may want to believe different but well, people wanna believe trobalt can helt t but truth is since i came in apartment in sweden, i cant stand heating elements, cans stand electric water kettle, can stant induction stove, cant stand my desktop computer, i had to lower its sleep, unplug ventilators, turn of heating elements in my room and leave one in kitchen, when i kook something i have to close door, hyperacusis is much worse. and about this anyone can think what they wish. this is how am i tolerating tinnitus. and there is progress report so one can read who is each member doing. now i have my tinnitus back but worst that that is hyperacusis it makes it so reactive it just jumps up. now i am on 200-250-200 (yesterday i was on 750x3 today going down)
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
Well i wrote today , my H is severe now, nd it makes my t also, when i wake up it makes to go up and up... i have to avoid almost all sounds so i dont initiate strong tinnitus....yeah @Christian78 , I think we are the only ones experiencing those effects. Are others so cold-hearted?
hehe so I see the effect of "high exposure to say yes to every question" hit hard on you. It would be wonderful to have a joy-drug with those effects, it would be perfect drug with no hang over, no stomach problems, nothing bad, just open your mind and be yourself with the erradication of all prejudices.
now about H you made me a bit scared.
So @Zimichael had H when starting Trobalt, this is the most weird case
For most of us, RTG Erradicates H when taking it. Any case of total erradication after withdrawal ??
For you, on withdrawal of Trobalt, the H appears (this seems more logical but very umpleasant)
I think no one else reported increasing of H on taper off, hope is gets normalized for you. Did you consider taking Keppra for H, as for Viking it totally erradicated its a very safe drug
Seems like all efects reverse on withdrawal like QT interval decreases
i just dont know, i dont know, i am not smart enough i can just hope...
i was on drug 20 aug to now but on 15 dec it lost effectiveness so 4 months, you will tell me after 4 months on it how do you feel, i dont know others who been on it 4 months and also stopped it?
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