Retigabine (Trobalt, Potiga) — General Discussion

[RaZaH]

@undecided , maybe you should check the thread about using the neti pot , that seemed to help a person with PT a lot?

 

[undecided]

The weird thing is that I'm getting some relief with retigabine, even though my tinnitus is (mostly) pulsatile.
Don't really know what to make of this.
Maybe it has to do something with the general "slowing down" that retigabine causes... It's definitely not that.
The noise is way, way lower after the dose and that's no kind of placebo. Not after 3 weeks of use.
I would definitely continue using the drug if I wasn't scared of the long term side effects and the supply issues.
But as it is, I can't really justify using the drug any longer.

 

[locoyeti]

The weird thing is that I'm getting some relief with retigabine, even though my tinnitus is (mostly) pulsatile.
Don't really know what to make of this.
Maybe it has to do something with the general "slowing down" that retigabine causes... It's definitely not that.
The noise is way, way lower after the dose and that's no kind of placebo. Not after 3 weeks of use.
I would definitely continue using the drug if I wasn't scared of the long term side effects and the supply issues.
But as it is, I can't really justify using the drug any longer.

Hey undecided, sorry to hear about this. I just checked your original T description:
"High frequency hissing noise, mostly in the right ear. Not extremely loud but quite annoying. Starts low in the morning, gets worse as the day goes by. Has some pulsating component as well, creeps in during the afternoon hours, sometimes. Have low days and annoying days."

Is the high frequency hissing noise pulsatile as well? Can we get confirmation that you truly have objective tinnitus (because that is quite rare)? Did the T keep the same schedule all the time regarding "Starts low in the morning, gets worse as the day goes by" and how did retigabine affect that. How did it affect the two different kinds of T and did you have any other kinds of T. sorry for the barrage of questions, just wanted to know.

 

[Juan Carlos]

I just went to my GP. Now I must eat my words if some day talked bad about GPs because he was nice to me and: First he admited he doesn't know anything about Trobalt, second he ordered blood and urine analisys for me with no reason, just because i asked (this took a little time). He sais there is no reason that urine retention could lead to renal failure (anybody know something about this?? @Dr. Nagler ) and yeah nothing about renal failure in the prospectus but two cases we had here makes me wonder
And lastly and unexpectedly, he offered to make some prescriptions of Trobalt for me (even i dont need them because i live in Spain) so i can save some money. So yeah I can but now 8 boxes of Trobalt 21x100mg for 1.4€ each !!
I will do the blood/urine analisys in 3 weeks, after some sime in my target dose wich is 600mg/day (I think this is a good balance between side effects/results)
Also now I have a date to check my eyes, as everyone on this should do

 

[undecided]

Hey undecided, sorry to hear about this. I just checked your original T description:
"High frequency hissing noise, mostly in the right ear. Not extremely loud but quite annoying. Starts low in the morning, gets worse as the day goes by. Has some pulsating component as well, creeps in during the afternoon hours, sometimes. Have low days and annoying days."

Is the high frequency hissing noise pulsatile as well? Can we get confirmation that you truly have objective tinnitus (because that is quite rare)? Did the T keep the same schedule all the time regarding "Starts low in the morning, gets worse as the day goes by" and how did retigabine affect that. How did it affect the two different kinds of T and did you have any other kinds of T. sorry for the barrage of questions, just wanted to know.

Hey locoyeti.
I don't have objective tinnitus. Just pulsatile tinnitus. Pulsatile tinnitus is not necessarily objective, it can be subjective as well (I am the only one who hears it).
I know for sure that it is pulsatile since I can understand that it is synchronous to my heartbeat (I actually confirmed that fact through a loud carotid doppler machine, the blood 'whoosed' to the sound of my T).

The high frequency hissing noise is not pulsatile, it is constant.
The retigabine seems to affect the pulsatile component more than the constant hissing noise, weirdly enough.
I would expect that the drug could at least rid me of the constant noise and leave only the pulsatile T, it is way more manageable.

The ENT I saw today was kinda useless, he went on to examine my ears (lol) and looked at my pretty great audiograms.
He did't pay any attention to my saying that my T is pulsatile (he says that how tinnitus' are - they pulse).
At that point, I got handed a leaflet about tinnitus, TRT and the usual crap.
I put them back on the table and asked for an MRA. He said there is no point, you'll be alright etc. I instisted and know I have to go find him at the hospital where he works in order to refer me for an MRA.

I might go find him and get the referral. Couldn't hurt I suppose.

 

[rtwombly]

nothing about renal failure in the prospectus but two cases we had here makes me wonder

One case of renal failure. Viking's side effects were serious, but different. Just for accuracy.

 

[Dr. Nagler]

He [my GP] sais there is no reason that urine retention could lead to renal failure (anybody know something about this?? @Dr. Nagler )

http://www.webmd.com/a-to-z-guides/postrenal-acute-kidney-injury-topic-overview

Dr. Stephen Nagler

 

[Zimichael]

Ummmmmmm.....Not quite sure how to go at this. It's sort of a "generalized feeling/conclusion" based on not very objective evidence. Guess I will just throw it out., though please realize I am just "speculating" OK?!

Taking Trobalt.

Looks to me like it has some "effects" that are not really in the "instruction manual" or list of generalized expectations we had accumulated c/o researching every source we could come up with. Plus Matt was our starting point and he "breezed through" on Retigabine with remarkably few weird or negative effects. Also outstanding results on his T.
Now we have more reporting. And I have my own experience of taking 84 pills of the stuff.

I'm going to leave "T effects" out of this, as it is abundantly clear to me that the "Kv channels hypothesis regarding Tinnitus" is solid. Retigabine sure as heck affects it! One way or another it is messing with it and that in itself is "profound" with respect to insight into "T mechanisms". The researchers can have a heyday with this.
I'm also going to leave out the "known" list of bigger deal side effects like urinary retention, pigment changes, etc. though the warnings about 'fatigue, memory problems, blurred vision, slurred speech, etc.' are indeed listed effects that overlap some of what I am going to refer to.

OK...What is clear to me is that Trobalt has pretty powerful mood, perceptional, energy, even "consciousness" effects. This can be all over the map, from intense fatigue, zombie-ness, brief brain "res-set" feelings, unreality type experiences, plunging mood, etc....to increased energy, increased clarity, insomnia, a kind of "high", anti-depressant action, etc. How an individual manifests this is likely to be as idiosyncratic and subjective as each of us are!
Personally I experienced about all of these effects in the weeks I was on Trobalt, though had a much stronger swing to the latter. The stuff made me much more positive and energized than I think I had a right to be.
For sure I had some "fragile periods" and intense fatigue, but they did not last long. Often just hours. I typed like a total dyslexic idiot for a few days, but it did not bother me the least. Overall, my "mood" was astoundingly good given that I began to experience a very, very scary effect (see my history) of greatly increased hyperacusis.
Looking back I have no idea why I did not drop the stuff like a loaded nuke and scream into oblivion...My take was, the Trobalt had a "high" effect that ameliorated that enough to continue, and increase the dose and danger. *[Not at all discounting the help I got here during that period!!!]

Am I making my point? I reckon this Trobalt is a much bigger "mood drug" than we had reason to believe it was. I also think that this will affect the "objectivity" of reports by users. Thus I would strongly encourage all trialees to try and be as objective as possible on the User Reports at least. Give all data. Give follow up on the prior data posted. Try and sequentialize accurately for things like doses, time taken, T loudness scale, and so forth from your prior report. "Numbers help" when trying to see past subjective noise, even though those numbers may be themselves reports in the subjective state. It doesn't matter. Put them down anyway. It will help to make sense of things later.

Take care all... Michael

 

[Ricardo]

What happened to ricardo?

I am hoping for full recovery (the renal problems seem to be highly reversible on discontinuation). Age could play a role? On side effects... and on brain plasticity. I will perhaps start a new attempt in January (at a lower dosage).

@Juan Carlos Well done!

 

[Juan Carlos]

I am still wondering and little worried, questions in my head
1-Urine retention, known effect, ok, no worries, after one monute i can finally pee
2-My big wonder: from the very first day on this I pee less, why?? This symptom can be a consequence of a renal failure but surely im not having renal failure from the first day
3- renal failure is not listed as a side effect, so why we had here that 2 of around 15 had renal problems with this drug, in the study of 1360 people they stayed years at full dose 1200 and no problems, those who had urine retention did not stop takin it , so i wont stop until analisis in three weeks
Is @Ricardo and @Viking renal failure due to urine retention, did u guys had urine retention.? Also peed less from the first day?
I dont consider that i have urine retention because i can pee every day, just need bit more time
Thanks @Dr. Nagler for the link, i see urine retention can cause renal failure. Any idea why i peed less from first day?
My analisys in three weeks will clear up this questions maybe, will report everything
@Zimichael u also had retention right? Did you check blood and urine for that?

 

[Viking]

I am hoping for full recovery (the renal problems seem to be highly reversible on discontinuation). Age could play a role? On side effects... and on brain plasticity. I will perhaps start a new attempt in January (at a lower dosage).

@Juan Carlos Well done!

I don't know if the age play a role! i'm 34. The most important side effect disappear in 1 week!
Best wishes Ricardo!

 

[Dr. Nagler]

Thanks @Dr. Nagler for the link, i see urine retention can cause renal failure. Any idea why i peed less from first day?

No.

But I'm just a bit concerned about the fact that your own GP does not realize that urinary retention can lead to renal failure. That's pretty basic stuff, Juan. Like "The thigh bone's connected to the hip bone" basic.

Dr. Stephen Nagler

 

[Christian78]

I have less in my system now . a little more t but I don't feel as retarded and out of control .

Do you know now how do I feel when i say drugged, dizzy, lost...?

 

[Viking]

Is @Ricardo and @Viking renal failure due to urine retention, did u guys had urine retention.? Also peed less from the first day?

Do not be too tight. Fully understand your fear. I was even scared. Be patient! Kidney failure is painful! If you have this condition you'll hear it from other symptoms!

 

[Juan Carlos]

No.

But I'm just a bit concerned about the fact that your own GP does not realize that urinary retention can lead to renal failure. That's pretty basic stuff, Juan. Like "The thigh bone's connected to the hip bone" basic.

Dr. Stephen Nagler

Do not be too tight. Fully understand your fear. I was even scared. Be patient! Kidney failure is painful! If you have this condition you'll hear it from other symptoms!

thanks, i feel good. No pain at all, u peed frequently and my case is the opposite. I will get more calmed when i get the results on analisys. I hope i get throuw it so wont have to wait 5 years for autifony

 

[Christian78]

I am still wondering and little worried, questions in my head
1-Urine retention, known effect, ok, no worries, after one monute i can finally pee
2-My big wonder: from the very first day on this I pee less, why?? This symptom can be a consequence of a renal failure but surely im not having renal failure from the first day
3- renal failure is not listed as a side effect, so why we had here that 2 of around 15 had renal problems with this drug, in the study of 1360 people they stayed years at full dose 1200 and no problems, those who had urine retention did not stop takin it , so i wont stop until analisis in three weeks
Is @Ricardo and @Viking renal failure due to urine retention, did u guys had urine retention.? Also peed less from the first day?
I dont consider that i have urine retention because i can pee every day, just need bit more time
Thanks @Dr. Nagler for the link, i see urine retention can cause renal failure. Any idea why i peed less from first day?
My analisys in three weeks will clear up this questions maybe, will report everything
@Zimichael u also had retention right? Did you check blood and urine for that?

Your muscles get relaxed, and you cant squeeze all urine out, if you sit and wait a 2-3 minutes you will do it, standing and pee can be problem. I had it. And I had and have orange urine specially if i drink little water.

I dont beleave you have serious problem. Urine can be orange to brownish, depends, and there is no blood in it, just depends how much water you take.


I dont know why but if I am only one who think.
We have some "doctors" here who like to sabotage and scare us.

If you agree with statement give me agree comment.
if you dont agree give me funny sign.

It is just democratic way to have opinion on something. And you will understand what I asked to be voted on, if you do, if not good again

On other hand I believe trobalt + tinnitus = side effect - good effects, higher dosage can give bad side effects and make you drugged, lover can make you feel batter but have worse t.

We who use trobalt, what you say? more trobalt, less t, more side effect/ less trobalt less side effects, more t?

 

[Christian78]

@jazz, @RaZaH, it really is too early to say any of this stuff. We've got to stop saying overly positive or overly negative things. We don't know if Retigabine will cure people with tinnitus over one year. We don't really know if the 6 months/1 year marks really make a difference that matters in this way. There could be hundreds of factors we haven't considered when it comes to why different people have responded differently. We don't know if it's chronicity. We don't have enough data. Zimichael, who went through heightened hyperacusis and had no positive effect, has said this several times. Our sample size is too small.

One thing I've noticed is that several people who have had problems with side effects have a history of recreational drug use. Is that the key factor? What about anti-depressant medication? A lot of us have been on those, did that change our brain chemistry so we can't recover?

According to the User Experience thread, we've never had a single woman try Retigabine. Not one. Will women respond better than men? Will they handle the side effects better or worse?

Are Eastern Europeans more prone to bad reactions? Does the country of manufacture matter?

What actually happens when you go above 900mg? Nobody has tried. Maybe 950mg/day cures everybody in a week.

It's too early to draw conclusions. All we can do is make smart decisions for ourselves personally and see where the data leads.

I most fried brain going over 300, i had ambulance coming 2 times to visit me

 

[Christian78]

I should be selling trobalt for 100 euro, it is cheaper that Spain 70, and Canada 150 euro, if you personalty without prescription go for it. What do you think, or if you invite me i could pass will lover prices?

Please give me opinions?

If there is few people in Canada i travel there and give them, then if there is in Europe i can go do delivery...

Just for Canada 10 boxes would pay trip

 

[dan]

I should be selling trobalt for 100 euro, it is cheaper that Spain 70, and Canada 150 euro, if you personalty without prescription go for it. What do you think, or if you invite me i could pass will lover prices?

Please give me opinions?

If there is few people in Canada i travel there and give them, then if there is in Europe i can go do delivery...

Just for Canada 10 boxes would pay trip

You'll never get 10 boxes of Retigabine without a prescription into Canada.

 

[Danny Boy]

For anyone with urine retention use

Dandelion- "has anti-inflammatory properties and is frequently used as a diuretic to increase urine output, helping with bladder inflammation and urine retention"

Nettle- "is an herb that is used for cystitis (inflammation of the bladder) and has restorative properties to help heal the bladder and kidney, and is frequently used as a diuretic, according to the University of Maryland Medical Center. It is commonly used as a tea, to be consumed two to three times per day"

Indian licorice- "extract are a natural substitute for typical antibiotics used to treat cystitis or inflammation of the bladder, according to Mamaherb.com. It can help with bladder retention caused by inflammation or infection with its natural antimicrobial properties. A suggested use consists of crushing up 50 mg of Indian licorice root into a paste, boiling it in a cup of water for 30 minutes, straining and drinking three times per week"

 

[rtwombly]

@undecided I'm sorry you haven't had lasting results. Thank you for sharing your story. I think that what it suggests is that if a person has tinnitus due to an ongoing issue, they can get temporary relief, but permanent change is less likely. From what I've read there seems to be a physical reason for pulsatile tinnitus more often than pure tone (or whatever you want to call it), and it makes sense that if the cause is ongoing, you'd need an continual supply of the medicine to attenuate it. Hopefully your new doctor will be able to suggest something to help with the ongoing situation, then you may be able to return to Retigabine to resolve any maladaptive adaptations that may have set in.

If you can't work out the ongoing issue, you can still look to AU00063 with hope. If the low side-effects part of their design works as intended, you could use their drug pretty much continually. Hang in there, undecided!

 

[Danny Boy]

To anyone thinking that this drug is scary, what about this?

Amitriptyline side-effects

• Abdominal or stomach pain
• agitation
• black, tarry stools
• bleeding gums
• blood in urine or stools
• blurred vision
• burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
• change in consciousness
• changes in patterns and rhythms of speech
• chest pain or discomfort
• chills
• cold sweats
• coma
• confusion
• confusion about identity, place, and time
• continuing ringing, buzzing, or other unexplained noise in ears
• convulsions
• cool, pale skin
• cough or hoarseness
• dark urine
• decrease in frequency of urination
• decrease in urine volume
• decreased urine output
• difficulty in breathing
• difficulty in passing urine (dribbling)
• difficulty in speaking
• disturbance of accommodation
• disturbed concentration
• dizziness, faintness, or lightheadedness when getting up from a lying or sitting position suddenly
• double vision
• drooling
• dry mouth
• excitement
• fainting
• false beliefs that cannot be changed by facts
• fast, slow, or irregular heartbeat
• fear or nervousness
• fever with or without chills
• flushed, dry skin
• fruit-like breath odor
• general feeling of tiredness or weakness
• headache
• hearing loss
• high fever
• high or low blood pressure
• hostility
• inability to move arms, legs, or facial muscles
• inability to speak
• increased hunger
• increased need to urinate
• increased ocular pressure
• increased sweating
• increased thirst
• increased urination
• irritability
• lack of coordination
• lethargy
• light-colored stools
• lip smacking or puckering
• loss of appetite
• loss of balance control
• loss of bladder control
• loss of consciousness
• lower back or side pain
• mental depression or anxiety
• muscle spasm or jerking of all extremities
• muscle tightness
• muscle trembling, jerking, or stiffness
• muscle twitching
• nausea and vomiting
• nightmares or unusually vivid dreams
• overactive reflexes
• painful or difficult urination
• passing urine more often
• pinpoint red spots on skin
• poor coordination
• pounding in the ears
• puffing of cheeks
• rapid or worm-like movements of tongue
• rapid weight gain
• restlessness
• seeing, hearing, or feeling things that are not there
• seizures
• severe muscle stiffness
• shakiness and unsteady walk
• shivering
• shortness of breath
• shuffling walk
• sleeplessness
• slow speech
• slurred speech
• sore throat
• sores, ulcers, or white spots on lips or in mouth
• stiffness of limbs
• stupor
• sudden loss of consciousness
• sweating
• swelling of face, ankles, or hands
• swelling or puffiness of face
• swollen glands
• talking or acting with excitement you cannot control
• trouble in speaking
• trouble sleeping
• troubled breathing
• twisting movements of body pain or discomfort in arms, jaw, back, or neck
• unable to sleep
• uncontrolled chewing movements
• uncontrolled movements, especially of arms, face, neck, back, and legs
• unexplained weight loss
• unpleasant breath odor
• unsteadiness, trembling, or other problems with muscle control or coordination
• unusual bleeding or bruising
• unusual tiredness or weakness
• unusually pale skin
• upper right abdominal pain
• vomiting of blood
• weakness in arms, hands, legs, or feet
• weight gain or loss
• yellow eyes and skin

 

[jeannie]

gosh Danny Boy, that's a lot of side effects!!! I know its a potent drug though. seems like we cant win when it comes to drugs to help us...

 

[Danny Boy]

gosh Danny Boy, that's a lot of side effects!!! I know its a potent drug though. seems like we cant win when it comes to drugs to help us...

That's drugs for you. I'd rather be on nothing, but grrrrr what tinnitus makes you do.

 

[Telis]

What is the point of retigabine if it doesn't reduce T permanently and is full of risky side effects? You could get wasted on a handful of drugs that I'm sure would reduce the perception of T temporary with way less danger I'm sure.

 

[locoyeti]

just got a 1200mg per day prescription from my doc, so i should be good to go up should i feel the need. things are going swimmingly though at 900mg/day. i had a spike 5 days ago, but it did not last too long (for an evening). I have since then had 4 straight days of low t, and the last two days have been super low. i plug my ears with my fingers and i don't hear much, whatever i do hear is very faint. i have pink noise blasting in my house though, and what is strange is that even when i don't hear much when i plug my ears with my fingers, i hear very slight more tinnitus when i take them out... i think there might be something like a somatic component going on, or something like a slight reactivity that i had not previously noticed. my t is less in my ears and more in my head, it presents kind of in the back of my head. much easier to deal with. i will probably stay at 900mg for at least a few weeks, and then see if jumping to 1200mg will seal the deal (complete silence). i am thinking of doing 300mg x four times a day instead of 400mg three times a day. plus i am unable to find any 400mg tablet providers.

also, i would say that i have gotten used to the drug. it is not hitting me as hard any more, and the cognitive issues are a bit better to deal with. there may be an adjustment period for people taking the drug, maybe 2-3 weeks of dealing with some more pronounced side effects. but the effect on my t are still occurring, and i feel as though i am feeling a gradual improvement. from @Mpt 's account, it felt like he sort of got all of the improvement immediately, with only gradual improvements later. for me it appears to be taking a slow a steady pace, perhaps that may be because my t fluctuated more than his, or maybe i am more 5 months more removed from t than he, or maybe there is just a qualitative difference between our t's. this is all very early anyway hopefully the next few weeks will bring better results. i am hoping for no spikes, because that is how my tinnitus has been before treatment, a string of good days, followed be a few bad days.

by the way my H has been greatly improved. i feel that H is a very underdiagnosed ailment. i think i have had H from the beginning, i just never really knew what not having H (after getting t) was like. i assumed all of the intermittent hyper-sensitivity was just a part of t. but on this drug i get more and more time with slight t and zero H, which is great.

 

[valeri]

What is the point of retigabine if it doesn't reduce T permanently and is full of risky side effects? You could get wasted on a handful of drugs that I'm sure would reduce the perception of T temporary with way less danger I'm sure.

Telis I would look at it from a different angle.

1) So far no one reported any life threatening or permanent side effects. Yes, few members had some more serious side effects (kidney related) but upon stopping the drug they all cleared

2) one person so far was cured, majority of others have different levels of improvement

3) still early days to say if it does/doesn't cure/reduce t permanently but if it saves a person from committing suicide or improves life quality than that's all that matters

It may be a bandaid but it's all there is that actually lowers the volume at the moment. I can't help but wonder how many lives could have been saved if this drug was easier to get.

Further testing would be great but seeing how corrupted and dark things look in medical/tinnitus world I'm really not holding my breath

 

[Philemon]

What is the point of retigabine if it doesn't reduce T permanently and is full of risky side effects? You could get wasted on a handful of drugs that I'm sure would reduce the perception of T temporary with way less danger I'm sure.

We don't know if it will reduce it permanently or not, there maybe many factors for this, your own T, your own sensitivity to the drugs, the way you taper down (and @Mpt seems to be on a good way for permanent effect) ... regarding efficiency, we still need a randomized double-blind study to be sure, but based on what i've read about drugs for T (none i think, except retigabine it seems), the theoretical rationale beyond retigabine's use for T, what i'm reading here and my own experience, my feeling is that there's still not other potent drug as retigabine for T ...
Regarding side-effects, sure the safety profile of retigabine is far from being good, but most of side-effects seems to be transitory (except for long-term use, which is not a good idea i think), and there's many drugs out there that have a more risky profile, so if one do all the test needed, it should be ok in most cases (but my view on this may be biased 'cause of moderate side-effects i'm experiencing)

 

[Telis]

Telis I would look at it from a different angle.

1) So far no one reported any life threatening or permanent side effects. Yes, few members had some more serious side effects (kidney related) but upon stopping the drug they all cleared.
2) one person so far was cured, majority of others have different levels of improvement.
3) still early days to say if it does/doesn't cure/reduce t permanently but if it's a life saver for a suicidal person than it's all worth it.
4) I just wonder how many lives could have been saved or improved if this drug is available to use until something better is found.

It may be a bandaid but it's all there is that actually lowers the volume at the moment.

Fair enough...good points. I really really hope it helps. I just have this feeling that reduced cognitive ability= low T....and you could find this same effect in a number of much safer drug therapies. Hope I'm wrong.

 

[valeri]

Fair enough...good points. I really really hope it helps. I just have this feeling that reduced cognitive ability= low T....and you could find this same effect in a number of much safer drug therapies. Hope I'm wrong.

I'm not sure for how long people plan to stay on this drug, but I guess in the next few months we should see some results in terms of t volume reduction being permanent or just temporary.