Retigabine (Trobalt, Potiga) — General Discussion

[Philip83]

@Mpt , did u ever have any H since you got T?

 

[dan]

hey dan.. I heard some hissing yesterday afternoon for a minute or two after a long card drive on the highway, but it quieted down quickly... I didn't hear anything for a few hours after that, so curiosity got the best of me and I went and sat in my car inside the garage (needless to say an extremely quiet place) and I sat there and tried to "find" it for a few minutes and couldn't hear anything... going on my experience so far, this isn't a 100% cure, in the respect that I never hear any sounds ( I will say though that the sounds when I do hear them are not nearly as loud as my old tinnitus)... being a math dork, I was talking to a friend yesterday and conjecturing that I used to hear my tinnitus pretty much every second of the day, and on an average day I was awake for 61,200 seconds, now I hear my tiniitus anywhere from 0 to 300 seconds a day I would say, so assuming I hear it 300 seconds on about the worst day I've had (60,900/61,200)= .995% effectiveness-- I'll stop short of calling it a cure, but any treatment with a 99.5% success rate in treating a subjective symptom is for practical day-to-day purposes like a cure when it comes to the fact that even after a short time tinnitus has no effect on my life anymore other than me having to take some pills every 8 hours

Thanks Mpt for that uplifting and mathematical update. Wow, what a story.
I hope others have similar success.

 

[Mpt]

@Mpt , did u ever have any H since you got T?

Hi Phillip,

I never had h in regards to sound causing my ears physical pain, but I did have reactive tinnitus and I definitely developed more sensitivity to any loud sounds. The sensitivity to loud sounds disappeared before starting retigabine, the reactive tinnitus was as bad as ever though before starting the drug.

-Matt

 

[Zimichael]

HEY - GOOD NEWS ON PRICES! (USA)

I did more follow up today and found out some stuff, but first off the $$$ aspect (Even Telis will like this! )... Half the price c/o CVS pharmacy, and the 400 mg tablets! Here's the breakdown:
~ 30 tablets @ 400 mg = $280
~ 30 tablets @ 200 mg = $280
~ 30 tablets @ 50 mg = $142.50
So, the obvious target is the 400 mg tablets and cut to size!

Doing the math on the 400 mg tabs, works out to be 12,000 mg total for 0.0233 cents/mg [versus 0.0513 cents/mg from my original source/post].
OK, if we do an @Mpt dose of 900 mg a day, that works out to 13.3 days worth and a cost of more like $600 a month instead of closer to $1,380 a month for the 200 mg x '90 packs'. [$923 for 90 tablets @ 200 mg = 20 days worth, so for another 10 days add $461.50 = Total of $1,384].

SO CVS IS A LOT CHEAPER!!! This is doable...and I believe maybe 800 mg a day would be acceptable for smaller people, so that would be a full month's worth for $560.

Ummmmmmmmmmm....hey @Mpt if you don't mind me asking (or maybe can reply in Conversation), what is your "body mass"/weight? I'm not a huge fellow so mg/kg (or pound), for same plasma saturation you are getting could be a lower dose for me...like 800 mg per day.
Also this is all experimental yes. What IS the right dose? I don't think we know!...Or whether the brain is going to do a "re-set" back to quietude once these potassium channels have been "rectified" for a while and the Central Software Department then gives up on the tinnitus bandwagon it's been on. Maybe a month or two will be enough???

So if you have a CVS pharmacy around (they bought out Longs) you should get these prices nationwide. Here's the online version and there's even a 20% discount offer or whatever. http://www.cvs.com/

And yes...this is the non generic, brand name Potiga, not some funky knock-off.

Looking better! Now we just need some more people to try it...

Best, Zimichael

 

[Mpt]

The neurologist that my father in law spoke with recommended 900mg a day because he had no clue the right off label dose so he just defaulted to the maintenance dose he would prescribe an epilepsy patient...I'm 5'10 185lbs, I would like to go down 50-100 mg to see if I notice any difference but I'm scared to mess with a good thing at the moment

 

[locoyeti]

I'm scared to mess with a good thing at the moment

@Mpt, COMPLETELY understandable. I was looking over your old posts and noticed that your T seemed to fluctuate, you seemed to have good days and bad, some days where you didn't really notice it. My T presents the same way (it is not the constant 24/7 tone), and I think it might be because it is more brain related. I am very interested in taking this as well, but i was wondering if you could tell us about the first few days taking the drug. When you did the first 300 mg day, did it go away after the first pill or was it latter that night/ next day? could you describe what the remission felt like?

 

[Mpt]

My tinnitus was always quiet in the morning, but I heard it during the day pretty much all the time-- I just masked constantly, it was extremely reactive and I could hear it over literally everything when it would react, I started off doing 100 mg 3x a day , after a few days the noise reduced substantially and i would go an jour or so at a time sithout hearing it, but it was only after working my way up too 900 mg that the tinnitus was "gone" to the extent that it is now

 

[rtwombly]

Found out my insurance is good until the end of this month, and I could get a three-month supply of any dosage for $80 copay, no pre-approval required. And then I found out my doctor is leaving for vacation tomorrow afternoon.

*Sigh*

 

[Christian78]

I started is 2,5 days ago and i have side effects of mental missuses like headache slight, more dizziness, slumber speech a bit i control it but dizziness and weakness is strongest side effect for now.

 

[Christian78]

Basic question here... IS ANYONE ELSE OTHER THAN @Mpt ON THIS DRUG YET?????

Also, anyone having any joy getting it in USA pharmacies???

I am going to try and see if I can find availability here at my local pharmacies today (CA) as have some contacts therein. Also my doc has already said he would prescribe it, but I was going to do a few "other things" first (nerve ganglia blocks, etc.) but those all went out the window yesterday as I now have a new hassle to deal with first. My one and only root canal tooth has gone belly up and will be pulled Thursday. Big time..."Oh crap!" I can assure you, as that took much torture to do with my T!
(As some of you may know 'dental work' can mess with stuff like what I was about to try...sort of like glorified acupuncture but with procaine injections instead).

Anyway, I will post at end of day what I find out re Potiga availability and price.

Best, Zimichael

Yes, i started it 2,5 days ago... for now no real effect efept side effects, not dangerous thow, will see when i get to 200mgx3 a day

 

[Carlos1]

Yes, i started it 2,5 days ago... for now no real effect efept side effects, not dangerous thow, will see when i get to 200mgx3 a day

Christian please keep us posted and I hope you achieve great results god bless you.

 

[Christian78]

Well to be there 100mg x 3 a day is not producing any results i can say it has effect. Price i got a box 82 pills 100mg is 40 euro. box of 82 pills of 300 is 110 euro Original Trobalt in Europe)

 

[lapidus]

@Christian78

How could you get a doctor to precscribe Trobalt off label for T to you in Sweden? I doubt that swedish doctors would prescribe it even to someone with epilepsy. Swedish doctors never prescribe anything to anyone, let alone for off label experimental use. They're too afriad to be called drug dealers and lose their license.

 

[Christian78]

Well I am now on Balkan, and i got it from Serbia.

 

[Hudson]

Well I am now on Balkan, and i got it from Serbia.

How long have you been taking it? Any differences so far in your tinnitus?

 

[Zimichael]

Matt...thanks for the updates/clarifications, and weight.

So, if I'm not getting it backwards, your "loading dose" is 4.86 mg/pound body weight/day...(900 divided by 185).
I'm a bit 'slighter' than you at 140 pounds, so my equivalent "loading dose" would be 675 mg total per day...(900 divided by 140 = 6.4 mg/pound which is nearly 30% greater.....Thus at 675 mg/day that would bring me closer to your "load" = 4.82 mg/pound my body weight).

Personally I don't get it re the one size fits all drug doses for a lot of meds. I mean please, if the drug is plasma concentration relevant, some guy at 300 pounds and 6 ft. 4 inches is going to have a lot more blood in there than me. Now I suspect it is not a straight linear "volume/size" thing (as veins and blood vessels are semi standard I guess for similar sizes if extra weight is adipose tissue/fat), but with a number of meds like anti-parasitics, and for pediatrics, the dosage is absolutely calculated by body weight.

Thus I would suspect I could get a good smacking dose of this Potiga at 60 x 400 mg tablets a month, giving me 800 mg a day...which = 5.7 mg per pound and > than your number Matt! So $560 a month...THAT is more like a "trial-able" $$$ figure for me.

But first I have to get the darn failed RC tooth pulled today...and that whole dog-and-pony-show. Scheise!

Then if all OK I'm off to take my absolute best "anti-depressant"...another back-packing trip to 12,000 ft. in the Sierra's. So the Potiga is going to have to wait. And meanwhile reports will hopefully come in from @Christian78 and anyone else who gets going on it. (Hey good for you Christian!). Would also be great to have a 'longer term T' trialee, as both Matt and Christian are not in the 'multi-years' range with this "affiction".

Best, Zimichael

 

[Christian78]

How long have you been taking it? Any differences so far in your tinnitus?

I started is 2,5 days ago and i have side effects of mental missuses like headache slight, more dizziness, slumber speech a bit i control it but dizziness and weakness is strongest side effect for now.

 

[Hudson]

I started is 2,5 days ago and i have side effects of mental missuses like headache slight, more dizziness, slumber speech a bit i control it but dizziness and weakness is strongest side effect for now.

I hope the side effects of a new medication wear off soon for you. Please report back in the coming days (and weeks maybe?) about the impact on your tinnitus. You have had it almost a year, and it would be very interesting to us all what it can do for you. All the best!

 

[RaZaH]

Very exciting , I am working on getting my drugs !
Hopefully soon.

 

[jazz]

I started is 2,5 days ago and i have side effects of mental missuses like headache slight, more dizziness, slumber speech a bit i control it but dizziness and weakness is strongest side effect for now.

@Christian78 I hope these side effects resolve for you. Do be cautious about urinary retention. It is a serious issue. If it happens, go to the ER. This specific side effect is not dose related and will show up early in the treatment. This is unlike the bluing and eye pigment changes that are dose related and do appear later.

Anyway, I just copied a few graphics on the drug's side effects. But people need to go to the site and read everything closely.







Here is the link: http://www.medicines.org.uk/emc/medicine/24527/SPC/trobalt/

 

[rtwombly]

Interesting link, jazz. It looks like they are saying that the retinal changes are most likely associated with long-term use. The FDA warning was careful to indicate that they don't really know, but presumably if the vision disturbance was significant, it would have been seen earlier in the trials.

It says that the plasma half-life is 6-10 hours. I wonder how long it takes to have an effect? I could see starting the day with a dose, then trying to wait for it to wear off before taking another, just to keep dosing to a minimum. Say 8 in the morning and 6 at night. It would make a huge difference to me if I knew I had a pill that would help.

Trying to find a new GP who will play ball....

 

[Telis]

Hi Phillip,

I never had h in regards to sound causing my ears physical pain, but I did have reactive tinnitus and I definitely developed more sensitivity to any loud sounds. The sensitivity to loud sounds disappeared before starting retigabine, the reactive tinnitus was as bad as ever though before starting the drug.

-Matt

Hi Matt,

Will your opinion on retigabine change if it turns out to be unsuccessful for others? Would this sway your view as to the effectiveness of the drug on you personally? Or are you totally convinced that this is what helped in your situation, regardless of the outcome for others?

Thanks

 

[Viking]

I bought the Trobalt 100mg, I will update you on my progress with it, hoping against hope to get some relief. Thanks all. Ivan

 

[Mpt]

Hi Matt,

Will your opinion on retigabine change if it turns out to be unsuccessful for others? Would this sway your view as to the effectiveness of the drug on you personally? Or are you totally convinced that this is what helped in your situation, regardless of the outcome for others?

Thanks

I'm 99% positive that retigabine basically cured me--- i really don't think what happens with anyone else will change that oppinion because the change for me conincided with taking it and the change was drastic- not some 50% improvement, blah, blah... it was basically a 100% improvement-- if my improvement had been more partial maybe I would be more open to viewing it as coincidence or a plabo effect

 

[jazz]

I'm 99% positive that retigabine basically cured me--- i really don't think what happens with anyone else will change that oppinion because the change for me conincided with taking it and the change was drastic- not some 50% improvement, blah, blah... it was basically a 100% improvement-- if my improvement had been more partial maybe I would be more open to viewing it as coincidence or a plabo effect

I agree! There's no placebo effect with you. Over time, however, I wonder if you could reduce the dose to prevent longer term side effects? I'm going to do more research. I also wonder if @benryu is correct, and the drug might eventually permanently correct those malfunctioning potassium channels. Oh, that would be a happy day!

And I am so very happy for you!

 

[cullenbohannon]

Hey all, Ive talked to my doc about it, he was a bit hesitant at first as he's not comfortable prescribing things he doesn't know but that i could probablly find someone to prescribe if he ends up not doing it. After talking to him for a while he said hes gonna call around and learn what he can about it. So ill keep everyone posted if i decide to go through with it.

On a side note it turns out my doc has T. Did not know that but i think thats why he was extremely helpful to me and understanding throughout my ordeal. Its nice to have a doctor who actually cares, and is willing to learn, even when its from his patients.

 

[Champ]

Definitely going to look into this once I get back from Los Angeles. You guys are getting me pumped up!

 

[Grace]

Hey all, Ive talked to my doc about it, he was a bit hesitant at first as he's not comfortable prescribing things he doesn't know but that i could probablly find someone to prescribe if he ends up not doing it. After talking to him for a while he said hes gonna call around and learn what he can about it. So ill keep everyone posted if i decide to go through with it.

On a side note it turns out my doc has T. Did not know that but i think thats why he was extremely helpful to me and understanding throughout my ordeal. Its nice to have a doctor who actually cares, and is willing to learn, even when its from his patients.

Maybe he is thinking of taking it himself.. Lol!!! Wish you luck if you get it!

 

[Champ]

Maybe he is thinking of taking it himself.. Lol!!! Wish you luck if you get it!

He's probably like "whoa... there's a drug that will stop my tinnitus?"

 

[James White]

There was a drug that is now banned called rivotril/clonazepam that was for epilepsy that was used a lot for tinnitus, any of you guys had used it ?