Retigabine (Trobalt, Potiga) — General Discussion

@JuanCarlos
1. I tapered on very slowly (increasing by 50 mg a day), but tapered off more quickly – in about a week from 900 mg to zero.
2. Side effects began at about 600 g a day. But you don't really "feel" that your kidneys are failing. I was lucky to have at that time a complete blood work and my creatinine was over the roof with a residual kidney function of only 30%.
3. I didn't notice anything. Extremely tired to the end (but I thought it was the retigabine and didn't make the connection). I was anemic because my kidneys didn't filtrate anymore.
4. No
5. I would rate it at 7 or 8. Cause is unknown. I just woke a morning with this beast. Perhaps othotoxic (I was taking an ACE inhibitor)… or stress related.

¡Cuídate!

@Danny Boy Thank you very much!!!
 
@Juan Carlos



thanks for the input.
However I was asking for people to put their current trobalt usage AND when they started on each posting to avoid having to keave the post and go out back to check out the information and then go back into the thread again. It is inconvenient to have to go out and back in again. Plus when collating the added info that people put on their posts in a regular fashion as on here, sucn as feeling good or bad, having a side effect that lasts maybe a couple of days or having a spike that lasts a day or few hours between medication for example, will be written on these posts.
We already have a diary being completed by users of trobalt under the USER EXPERIENCES below this thread. Another diary will be fine and useful.
But if we can see immediately that user is on such and such dosage now and he has been using for x time, we dont need to go out of the thread to read up and then back in again plus we will have much more detailed analysis on this thread for later data collection.
hope that is clearer than mud but i doubt it as i have not slept so may have written this very badly - apologies if i have...

You know, if the info is on the poster's profile like @Juan Carlos suggested, you could just right click and choose "open in new tab" so you don't have to leave the thread at all.
 
@JuanCarlos
1. I tapered on very slowly (increasing by 50 mg a day), but tapered off more quickly – in about a week from 900 mg to zero.
2. Side effects began at about 600 g a day. But you don't really "feel" that your kidneys are failing. I was lucky to have at that time a complete blood work and my creatinine was over the roof with a residual kidney function of only 30%.
3. I didn't notice anything. Extremely tired to the end (but I thought it was the retigabine and didn't make the connection). I was anemic because my kidneys didn't filtrate anymore.
4. No
5. I would rate it at 7 or 8. Cause is unknown. I just woke a morning with this beast. Perhaps othotoxic (I was taking an ACE inhibitor)… or stress related.

¡Cuídate!

@Danny Boy Thank you very much!!!
Muchas gracias !!! MTP tapered off very slowly. hope it doesnt come back for him too

I wish to know if there is any other way to know if someone has kidney problems other than making blood tests. @Dr. Nagler ? @Dr. Martin @Dr. Hubbard @Dr. Gans ? my GP will be very angry if I tell him that i am taking a drug by myself with no prescription and i ask him to make this tests, besides the eye examination wich is recommanded every 6 months
 
@lapidus

You know, if the info is on the poster's profile like @Juan Carlos suggested, you could just right click and choose "open in new tab" so you don't have to leave the thread at all.

thanks and that is a great idea that no did not think of...

however how much extra work is it for each person to add this data to their post?
imagine when one or two people are trying to collate this data and print off once this thread is HUGE!
how much more work will be involved having to click to a new tab, look at that and then go back to the post? LOADS!!
plus when it is on each and every post, it will show the latest even temporary events that happen on a daily basis. People post and say what is happening to them at that time.
If they go to their diary and are so meticulous then fantastic - but this is rare. Normally people post when they are experiencing something different whether good or bad. Just a thought and know that we want to summarise the data from the am 101 thread which is now 1200 pages long. A huge and horrendous task....and this thread will go the same way. Just thought we could do something about it now before it gets too large....
So I am suggesting again:
on top of each post please:

Age
When T started
How it started
When started Trobalt
Current dosage

How hard can that be before during of after completion of post?
Would take all of a minute to complete
Could have a reminder on this thread - dont forget to post your age, etc....
Just trying to make it easier rather than harder...

A diary great idea (already in existence but not completed by all and not necessarily up to date)
This would ensure that the info would be up to date each and every time someone on trobalt makes a posting
 
@Ricardo, sry to hear that. Taking Trobalt seems like playing Russian Roulette with five bullets:nailbiting:
...which is really frustrating. It really seems that this stuff lowers T.
But the side effects are problematic. Otherwise, everyone (or many of us) here would take this stuff immediately.
The question is what is in the drug that lowers T of even make it disappear.
 
@JuanCarlos
1. I tapered on very slowly (increasing by 50 mg a day), but tapered off more quickly – in about a week from 900 mg to zero.
2. Side effects began at about 600 g a day. But you don't really "feel" that your kidneys are failing. I was lucky to have at that time a complete blood work and my creatinine was over the roof with a residual kidney function of only 30%.
3. I didn't notice anything. Extremely tired to the end (but I thought it was the retigabine and didn't make the connection). I was anemic because my kidneys didn't filtrate anymore.
4. No
5. I would rate it at 7 or 8. Cause is unknown. I just woke a morning with this beast. Perhaps othotoxic (I was taking an ACE inhibitor)… or stress related.

¡Cuídate!

@Danny Boy Thank you very much!!!

Did the trobalt play a role in your kidney failing?
 
Also, does anyone know where I can get more supply of trobalt? I think you need to be on this for 4 months or more?
 
Did the trobalt play a role in your kidney failing?

Definitively. I didn't have any problems with kidneys before. Retigabine isn't "fun"; it's a very potent stuff which interacts with many systems in you body and each person reacts differently. Vision wasn't a concern for me. Please check any problem with a doctor. Trobalt is quite easy to become in Spain - even without prescription (my mother lives in Spain). And Juan Carlos confirmed it.
 
5. I would rate it at 7 or 8. Cause is unknown. I just woke a morning with this beast. Perhaps othotoxic (I was taking an ACE inhibitor)… or stress related.

I would appreciate it if you would specify which ACE inhibitor you were taking?

Thanks!
 
Also, does anyone know where I can get more supply of trobalt? I think you need to be on this for 4 months or more?
2 months at maintenance dose plus 1 for taper on/off should be enought,
I think someone has to reach the dose that nullifies the T, like mpt did, and stay like that 1 or 2 months, then very slowly taper off while its not coming back

Trip to Spain is around 40 to 80 €. check www.skyscanner.net then its 110€ every box of 84x200mg
------
Strange that kidney problems is not advertised as a side effect, but I read already like 2 or 3 trialees with this problem, it depends of every person. some people with epilepsy take it for years with no problem.
For your relax, I read that in the tests, some people took overdose of 900mg at ONCE and they had arrithmia problems, that later disappeared and they are still alive )

I also read that there is no way the check if you have kidney problem unless you make blood or urine tests. Keep the blood pressure normal or low would help to avoid kidney problems
 
Here in Portugal don't sell the trobalt, but….
In the pharmacy they told me, if the doctor write a paper where said that I need the med, they can import trobalt from another country. They told me that is usual doing that. Also they need the prescription.
I'm not decided yet because the side effects.
 
Definitively. I didn't have any problems with kidneys before. Retigabine isn't "fun"; it's a very potent stuff which interacts with many systems in you body and each person reacts differently. Vision wasn't a concern for me. Please check any problem with a doctor. Trobalt is quite easy to become in Spain - even without prescription (my mother lives in Spain). And Juan Carlos confirmed it.

Must be something to do with the urine retention...Maybe dandelion will help with that issue. If it's blood pressure then beetroot and hibiscus may help.
 
When i say i am bluebary that means I can talk on skype or viber becoue pill hit me hard and i must lay down so you all all know on my skype and viber my fiends on slype and viber so pleas undsetand me.

i myst lay down becouse i cant walk or speak. imust wait , i become like heavy drunk....
 
It sounds like it is having a bad affect on you Christian. Sorry to hear that. Also @Ricardo - not great. Hoep you make a full recovery from renal failure. That is severe.

I would be willing to give it a try. What are the number of months and supply amount one needs to do a personal try to get up to optimum dosage?

i.e.
Month 1 - xxx
Month 2 - xxx
Month 3 - xxx
Month 4 - xxx

Can someone fill in the blanks for me and I'll try and make a plan getting some somehow.
 
i think @Juan Carlos is spot on. take whatever dosage will you tamp the T down significantly, hold there for a month or two, then tamper down slowly. I think the taper up should be a week or two, hold for two month or longer (this is variable), and then taper down a month or less ( i think this should be slower than the taper up).
 
I feel like @Ricardo is an outlier. There are side effects to this drug and some get more than others. On the whole though there is a much higher percentage of tolerance to the drug. There are other drugs out there where the tolerance is 50% or higher. It is also possible that other factors played into the kidney problem.
 
My head is spinning with a morning bout of RTEx... Oh, that means; "Retigabine Thread Explosivitis".

@Juan Carlos ... I'm not a doctor (re your questions). However, at 250 mg/day total I suspect that you are still in the 'unknown zone' of what might happen with your T and 'side effects'. As your dose increases I figure things will get more clear one way or another.
On the peeing thing, this may be helpful:
URINARY RETENTION TIPS...
~ In case this link does not work, it is post # 1450, page 49 of this thread. Note that drinking more to see if you can pee more, is not a good idea. The 'timed voiding' should do it unless getting more serious. I also believe that this could be a transitory phenomenon and may settle down to normal in a few days - but monitor it for sure. It is a "known" side effect.
On your heartbeat and going to sleep...Yes, another potential Trobalt area c/o GSK though not in classic side effect list. If relevant, supposedly the 'Q wave' is affected (rhythm, etc.) but I would take that to mean anything regarding heart. As I posted when doing my Trobalt I took my blood pressure daily as there were references to blood pressure from what I was reading in the "AUS - GSK data"...[Think it was there, so many articles and studies read!]
Overall though, I think you should expect some "tricks and trips" with this drug...I had numerous little things happen along the way that lasted no more than hours or a day or two. If you are 'nervous' about Trobalt, I suspect these will naturally 'magnify' somewhat.
Conclusion...If you are experiencing anything that makes you sincerely concerned...just hold at that dose and give it some days. No-one says everyone/anyone can or should jump up to 900 mg/day total, in a week.

@amandine ...Your desire to have all trialees post their dosage, age, T info, etc. on every post is commendable. However, if it happens I will fax you my Trobalt prescription as a reward. :)
I have been trying for quite some time to just get members to post basic info on their T (let alone personal information!) on their Profiles/Information tab...and I am afraid it has been rather unsuccessful despite how easy it would be.
Indeed as Juan Carlos has said I think this method could be a possibly somewhat likelier option regarding your request: i have a better one: everyone in Trobalt, post their dosage and effects on his own profile, in the section "Profile Posts", like i did on mine. So no more need to ask, just go to the user's profile, will be like a diary.

@SoulStation ...I strongly believe there is no "one size fits all" taper, or optimal/effective dose for Retigabine and T. Look at how varied it has been for our small pool of testers. However, the evidence is clear from the research that it is all about DOSE, then maintaining that for long enough to re-boot the tinnitus/brain screw up via plasticity. IMHO all this is going to be as individual as hell and also related to how long one has had T, plus whether 'hard core tonal'.
Locoyeti has summed it up in a nutshell though:
i think @Juan Carlos is spot on. take whatever dosage will you tamp the T down significantly, hold there for a month or two, then tamper down slowly. I think the taper up should be a week or two, hold for two month or longer (this is variable), and then taper down a month or less ( i think this should be slower than the taper up).

Enough, though wanted to ask Ricardo for more 'historical info' in his Profile, but others may ask those questions...I need more coffee to deter further 'RTEx'...

Best, Zimichael
 
Yes . I have had mild urinary hesistaion and though it has subsided to a certain degree where I felt.like it wasn't posing a problem @Ricardo has sufficiently and probably thankfully scared me into putting a total hold on this. I'm tapering down starting today.
 
Yes . I have had mild urinary hesistaion and though it has subsided to a certain degree where I felt.like it wasn't posing a problem @Ricardo has sufficiently and probably thankfully scared me into putting a total hold on this. I'm tapering down starting today.
It would make sense to get an albumin test done by your GP's office. Sounds like it's fairly routine, though you'd probably want to ask for the 24-hour urine-over-time version.

I'm going to ask my neurologist about this next week. Probably should be on the standard disclaimer for anybody trying Retigabine: 1) Get a baseline vision test, including the tests advised by the FDA before taking your first pill. 2) Also get a baseline urine albumin test and schedule to be retested at intervals recommended by your doctor.
 

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