Retigabine (Trobalt, Potiga) — General Discussion

[SteveToHeal]

Dear friends: I have bad news for me and I do not know what to do. Yesterday, while I was happy for almost silence, I began to get a bit of burning in the bladder and urinary hesitancy. Tonight, the problem has become more serious because I feel a slight twinge behind his back to the right side at the level of the kidney. This morning I did not take Trobalt because I had read that among the most common side effects, there are just these. I do not know what to do. I'm really very sorry.

I agree with EddyLee there Ivan (Viking). Go get your bladder and kidneys checked out. Thanks for letting us know soldier! All the best. We are all holding thumbs for you!

 

[Christian_B]

Dear friends: I have bad news for me and I do not know what to do. Yesterday, while I was happy for almost silence, I began to get a bit of burning in the bladder and urinary hesitancy. Tonight, the problem has become more serious because I feel a slight twinge behind his back to the right side at the level of the kidney. This morning I did not take Trobalt because I had read that among the most common side effects, there are just these. I do not know what to do. I'm really very sorry.

Without knowing anything about this, a guess would be you're taking too much mixed medicine ? sorry about your condition friend, hope you get better fast.

@Mpt - how are you doing? and for how long have you been on retigabine now? are you feeling any side effects?

 

[Christian78]

@Christian78 ...can you please elaborate on this:

TROBALT CAN NOT BE CUT OR CRUSHED

I have managed to get the pharmacy to prescribe 400 mg Potiga and can't seem to get an image of the thing. If it can't be cut into 50 mg sections then I don't want to pay the $$$ for it as I'm not starting on 100 mg TID ( 3 x a day) for sure! I have had some bad experiences with meds and I'm in the 'go real slow' school!

Any chance of a photo of one of your pills???...and sorry what strength are the each again??? You may have said before but this thread is so long already I'm getting lost

Thanks much... Zimichael

it is nicely writen in include paper almost a4 that medicine can not be crushed as it contains several chemicals not only retigabine and so on... read it look on internet

 

[Hudson]

it is nicely writen in include paper almost a4 that medicine can not be crushed as it contains several chemicals not only retigabine and so on... read it look on internet

Are you thinking about trying trobalt again and tapering the dosage up as suggested?

It would be a shame not to IMO if you already have the medication and a doctor willing to work with you. It's all about what you feel comfortable with though.

 

[Christian78]

Are you thinking about trying trobalt again and tapering the dosage up as suggested?

It would be a shame not to IMO if you already have the medication and a doctor willing to work with you. It's all about what you feel comfortable with though.

I will do it again, i notice as i lower dosage that spike apyer again. But I speak 6 languages fluent, and 6 partly and fidn it hard to say somethin on my mother laguage so i ill repeat it again but the way
benryu suggested so i will do it for 3 moths profesionaly. spike are gone, when i started with it t was much lower on small dosage.

 

[Christian78]

Well, I'm back from the neurologist and no Potiga for me. Both the PA and the Dr said they were stepping back from Potiga for any use, due to bad experiences from patients and a lack of results. They recommended ALA and gave me a prescription for Diomax, a diuretic. ALA is about the only antioxidant I haven't tried, so I'll give it a go. The Doc said he thought they had Potiga samples they could give me if these interventions don't help, so I may go back.

I dont undertand why they gave you those medication???

Diomax has know side effect called tinnitus?

AMA=some acid something that is more to headacke, better memory

 

[just1morething]

@Christian78 Maybe you should stay on a low dose if you were getting a benefit? @benryu's dosage chart was probably meant more for people with epilepsy. I don't think any dosage has been established yet for tinnitus.

 

[Christian78]

Brief notes here as helluva day:

1. @benryu ...my docs' assistant sent me & this right in your neck of the woods! Prices look really good!

http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

Ezogabine - also known as Trobalt (Retigabine)

ProductManufacturerDosageQtyPrice(USD)

Potiga Known as Trobalt outside the USGSK50 mg84$148.00

Potiga Known as Trobalt outside the USGSK100 mg84$149.00

Potiga Known as Trobalt outside the USGSK200 mg84$269.00

Potiga Known as Trobalt outside the USGSK300 mg84$359.00

2. Reason doc sent me this is my source price at CVS failed! Please note anyone following up on those posts of mine.
When it came down to it there were two issues. First was pharmacist was not happy with doling out 400 mg pills when instructions to them are START SLOW at 50 mg max (I presume TID) for 1 week...Note ref. Christian!!! However, I got my docs office (great assistant!) to muscle them into saying OK..."as the pills have to be cut anyway if tapering up even slower than recommended which patient is going to do, so what's the big deal?!"
Second was the pricing was wrong, due to simple fact that it was only right for a minimum bulk quantity...Oooops! So unless three other people wanted it too they would not sell 30 pills and would only do a "90 pack". They would only do 30's of a faster moving drug and this is certainly not one!...This little fact only came out once the order went in as the 'scrip was there and done. Thus the price suddenly jumped up to near $950 instead of what it was before at $280 for 30 pills!......Whoa, too much for me as a trial thank you! Especially as I can react badly to some meds when others just breeze through them.
So I am not going to be a trialee until I can sort this out. Sorry all, but will pick all this up again when come back from the mountains anyway, and that has been pushed back a bit due to tooth extraction etc. too... My doc will do a scrip for the Canada Pharmacy above in fact.

Kind of a crappy week!

OK I'm wasted but wanted to get this on the thread.

Best, Zimichael

Thease are prices in Serbia in euro under are prices in Canada:

Potiga Known as Trobalt outside the USGSK50 mg84$ 20.00€

Potiga Known as Trobalt outside the USGSK100 mg84$ 40.00€

Potiga Known as Trobalt outside the USGSK200 mg84$ 76.00€

Potiga Known as Trobalt outside the USGSK300 mg84$ 107.00€

Canada.

Potiga Known as Trobalt outside the USGSK50 mg84$148.00

Potiga Known as Trobalt outside the USGSK100 mg84$149.00

Potiga Known as Trobalt outside the USGSK200 mg84$269.00

Potiga Known as Trobalt outside the USGSK300 mg84$359.00

 

[Christian78]

@Christian78 Maybe you should stay on a low dose if you were getting a benefit? @benryu's dosage chart was probably meant more for people with epilepsy. I don't think any dose has been established yet for tinnitus.

His chart was to make you go up to dosage, help brains plasticity to change and then go back, totally 16 weeks.

parts of his message:

Thanks for your message, my information is both coming from my experience as a researcher and a few scientifc articles.
I maily do applied math & stats, but I work on several medical project, especially neuroscience (computer modelling of the brain).

Trobalt works on reducing the range of those movements. (and has property to help the scale to go back to the equilibrium point (repolarization). But it's not as powerful as the AUT00063 that works specifically on the channel doing so.

What you seek is a slow increase to reach a balance and let the brain plasticity akowledge this balance as the normal state. It's like when you have dental braces, imagine you go too fast and don't let mouth adapt, it's gonna hurt and fuch your teeth up more that correctly remodelling.

 

[benryu]

@Christian78 Maybe you should stay on a low dose if you were getting a benefit? @benryu's dosage chart was probably meant more for people with epilepsy. I don't think any dose has been established yet for tinnitus.

No my chart was meant for T., but it was designed for me by a doctor who knows I am a healthy person with no other medicamentation, no allergy and relatively big (6ft 179pounds)

This drug works better with a balanced dosage, so it's important to gradually increase until you find the sweet spot, then keep the dosage for a few weeks & decrease.

 

[Christian_B]

@benryu - are you started on Trobalt yet?

 

[just1morething]

No my chart was meant for T., but it was designed for me by a doctor who knows I am a healthy person with no other medicamentation, no allergy and relatively big (6ft 179pounds)

This drug works better with a balanced dosage, so it's important to gradually increase until you find the sweet spot, then keep the dosage for a few weeks & decrease.

This is a recommended dosage:

Dropping down to 50 mg x 3 daily on week 16 seems pretty low. If you stayed on 150 mg/daily from the start, would it take too long to build up in your blood chemistry levels?

 

[just1morething]

What you seek is a slow increase to reach a balance and let the brain plasticity akowledge this balance as the normal state. It's like when you have dental braces, imagine you go too fast and don't let mouth adapt, it's gonna hurt and fuch your teeth up more that correctly remodelling.

"fuch" Is that a Swedish word for something?

 

[benryu]

@benryu - are you started on Trobalt yet?

No it's incredibly hard to get it :-/

 

[dan]

No it's incredibly hard to get it :-/

Is it possible to get it thru Canadapharmacyonline.com , if we are Canadian ?

 

[Christian78]

"fuch" Is that a Swedish word for something?

nope, there are similar words abut reacquire additional letters. they are not nasty words.

 

[benryu]

Is it possible to get it thru Canadapharmacyonline.com , if we are Canadian ?

I had a look to those websites and it's looks very scammy... many bad reviews, poor information, anyone has experience with those online stores ?

 

[just1morething]

I had a look to those websites and it's looks very scammy... many bad reviews, poor information, anyone has experience with those online stores ?

I have some. 90+% of their customers are from the U.S. I think most of their drugs are supplied from India, but not all. They (Canadian pharmacies) have been calling me recently, so a bit scammy yes, and no description of what the drug is used for on some sites. I do think some of the sites are legit and best to just call them.

 

[rtwombly]

I dont undertand why they gave you those medication???

Diomax has know side effect called tinnitus?

AMA=some acid something that is more to headacke, better memory

The thinking was, maybe I have some residual fluid or protein buildup in the inner ear that was not enough to show up with tympanometry, but is enough for tinnitus. The diomax is to "dry it out". ALA is often combined with NAC as an antioxidant cocktail. I've got diomax, ALA, and NAC waiting to try tonight.

I'm slightly worried about the side effect, but I'm going to try at least for a short time. Who knows, right? It'll give me something to do until the Autifony trial.

 

[Christian_B]

The thinking was, maybe I have some residual fluid or protein buildup in the inner ear that was not enough to show up with tympanometry, but is enough for tinnitus. The diomax is to "dry it out". ALA is often combined with NAC as an antioxidant cocktail. I've got diomax, ALA, and NAC waiting to try tonight.

I'm slightly worried about the side effect, but I'm going to try at least for a short time. Who knows, right? It'll give me something to do until the Autifony trial.

But if it has a side effect as tinnitus, it sounds pretty absurd..

 

[just1morething]

This person seems pretty decent and honest and deals with India
pharmacies. I don't think you can get Retigabine (Trobalt, Potiga)
from them though. https://www.progressiverx.com/store/

 

[lapidus]

@Viking
How are you doing man? Did you get to the hospital? I hope everything is alright with you. Please keep us updated when you get the chance.

 

[bill 112]

His chart was to make you go up to dosage, help brains plasticity to change and then go back, totally 16 weeks.

parts of his message:

Thanks for your message, my information is both coming from my experience as a researcher and a few scientifc articles.
I maily do applied math & stats, but I work on several medical project, especially neuroscience (computer modelling of the brain).

Trobalt works on reducing the range of those movements. (and has property to help the scale to go back to the equilibrium point (repolarization). But it's not as powerful as the AUT00063 that works specifically on the channel doing so.

What you seek is a slow increase to reach a balance and let the brain plasticity akowledge this balance as the normal state. It's like when you have dental braces, imagine you go too fast and don't let mouth adapt, it's gonna hurt and fuch your teeth up more that correctly remodelling.

Do you have auditory nerve damage as I seen in one of your previous post that you mention nerve damage affecting your hearing??Do you have a hearing loss and is it cochlea based or have you been diagnosed with auditory neuropathy.Thanks

 

[Christian78]

Well I have more or less normal hearing and drop at 8 kHz, I know my left ear don't hear after 12Hz but right hear up to 16 kHz. My ENT just look that and said I have nerve damage.

Here in another country i done Evoked potentials test that say there is no damage between ear and brain. So to who to trust? What to think, i am lost, doctors are just idiots who don't even know what to say, except there is no cure. I personally don't know whom to trust.

I am stopping medication just now but I will try to get it in Sweden and do retrial, at the moment i am still at 200 mg but tomorrow i will go to 100 mg... toward the end

And yes something strange happen, last night i could not sleep, and i was laying in bed and then in one moment my t turned of totally on 5 seconds (i have severe T) and then it came back in milder form...

I dont know what to think, except i never had shut down at all, so there must be some effect on longer usage...

 

[Christian78]

Brief notes here as helluva day:

1. @benryu ...my docs' assistant sent me & this right in your neck of the woods! Prices look really good!

http://www.canadapharmacyonline.com/DrugInfo.aspx?name=Potiga6804

Ezogabine - also known as Trobalt (Retigabine)

ProductManufacturerDosageQtyPrice(USD)

Potiga Known as Trobalt outside the USGSK50 mg84$148.00

Potiga Known as Trobalt outside the USGSK100 mg84$149.00

Potiga Known as Trobalt outside the USGSK200 mg84$269.00

Potiga Known as Trobalt outside the USGSK300 mg84$359.00

2. Reason doc sent me this is my source price at CVS failed! Please note anyone following up on those posts of mine.
When it came down to it there were two issues. First was pharmacist was not happy with doling out 400 mg pills when instructions to them are START SLOW at 50 mg max (I presume TID) for 1 week...
Second was the pricing was wrong, due to simple fact that it was only right for a minimum bulk quantity...Oooops! So unless three other people wanted it too they would not sell 30 pills and would only do a "90 pack". They would only do 30's of a faster moving drug and this is certainly not one!...This little fact only came out once the order went in as the 'scrip was there and done. Thus the price suddenly jumped up to near $950 instead of what it was before at $280 for 30 pills!......Whoa, too much for me as a trial thank you! Especially as I can react badly to some meds when others just breeze through them.
So I am not going to be a trialee until I can sort this out. Sorry all, but will pick all this up again when come back from the mountains anyway, and that has been pushed back a bit due to tooth extraction etc. too... My doc will do a scrip for the Canada Pharmacy above in fact.

Kind of a crappy week!

OK I'm wasted but wanted to get this on the thread.

Best, Zimichael

Well your doctor said it can be cut but pharmacy who made it said DO NOT CUT IT...

On those 2 pic are instructions pay attention on HOW TO TAKE IT.

 

[just1morething]

@Christian78 Aren't you somewhat reluctant to restart Trobalt with the health conditions @Viking is having?

 

[Hudson]

I have a little test for you. If you put one of the pills in your mouth and it dissolves within 30 seconds, cutting it won't any difference. If you put it in your mouth and it stays solid for longer than a couple minutes, cutting it might make a difference. Pharmacists by nature tell people to not cut pills unless they are scored, even then, they suggest not cutting it further. They live by the mantra that the manufacturer has made the perfect product.

 

[locoyeti]

Well your doctor said it can be cut but pharmacy who made it said DO NOT CUT IT...

On those 2 pic are instructions pay attention on HOW TO TAKE IT.

View attachment 2478


View attachment 2480

@Christian78 If you take a look at the dosage chart that @benryu posted, it may be important that you taper down slowly as well. If you are currently at 200mg, three times a day (total 600mg a day), then you might consider reducing the dosage by 100mg total a week, until you get to 150mg.
I think the fact that your T stopped for some time means that it is possible that the drug is having an effect. When are you considering taking the course again in Sweden?

@just1morething , the urinary retention issues are pretty scary. We don't know yet what @Viking has just yet, hopefully he will update soon. I asked a few doctors (I have a ton in my family and my best friend is a doctor), and they all say that urinary retention is very rare as a side effect to any drug, and it is usually only something you have to worry about if you are old (like over 60).

 

[Zimichael]

Christian... Thank you for answering the question and photos regarding 'cutting the pills'. Though I agree with Hudson that things are not at all simple when it comes to finding out what you can and cannot do with pills/caps, etc.

The pills here in 200 mg size are white oblong type which are usually more "cuttable" than the little hard round 'red ones' I have seen pictures of. God knows what the 400 mg ones look like but descriptions seem to be "oblong".

I have had close ties with a few pharmacists and I get different answers...even to simple questions like: "Is it better to store meds in the fridge with double ziploc bags and desiccant - and of course only open bag once at room temperature to avoid condensation?! Or is it better to keep 'at room temperature' like manufacturer says, even though my 'room temperature' may go over 86-90 degrees F (30-32 degrees C) in summer?!"
I have no clear answer yet and I have asked this question for years of any pharmacist I can...with a lot of: "It depends...blah, blah, blah". From manufacturers I get the standard line of whatever they say on the box. They don't want to say anything else due to probable information liability issues as this is the land of lawsuits!
P.S. Anyone who knows the answer to this above feel free to let me know as my house is about to get above 90 degrees when I go back-packing! But maybe on a new thread? As I don't want to take this away from Retigabine.

Hudson, very interesting 'cut or not to cut' test!!!

Christian...re. "Well your doctor said it can be cut but pharmacy who made it said DO NOT CUT IT..." My doc I'm sure does not know, he is following me on this whole Potiga thing! He has no experience with it at all but trusts my judgement and has looked at the basics of it as course, and he knows I will be very careful about tapering, etc.

Anyway, I hope you do OK and maybe the lower dose is good for you!!! Maybe you don't need the higher dose, as look what just happened with the brief 'silence' moment...This whole Retigabine direction is 100% wild and random trial to me. We have no idea what is best dose for each of us. And just because Matt could go up at 100 mg jumps every three days does not mean everyone can...or that that is the best loading "effect" dose at 900 mg per day.

If I do this later I am going REALLY, REALLY slow!!! Like 50 mg a day for 3 days, then 100 mg a day for 3 days, then 150 mg total per day for a week, or longer....etc., etc.
So if the pills cannot be cut then my approach will require the 50 mg tablets and higher $$$/mg.

Again thanks for keeping us informed and please keep doing so, to also let us know you are OK as well of course.

Best, Zimichael

 

[attheedgeofscience]

I have more or less left this thread. I noticed the topic of cutting/not cutting pills has been mentioned (and seems to be on-going). [I know Markku might be looking into getting a pharmacist to join this board; we already have one amongst us].

I am no expert on medicine. But the following is definitely true in some cases of taking oral medicine: cutting/crushing a pill increases the surface area (needless to say) - and therefore increases the absorption rate in the intestines. Pills that come in capsules are sometimes designed to be pulled apart (if so, then doing so, is safe - and will increase absorption rate without harm). But, I generally don't recommend "playing around" with other types of medicine (ie. hard pills). Follow the advice of the doctor or pharmacist to the letter when taking medicine and how to take it... My advice. (I agree with @Hudson that pharmacists tend to err on the side of caution, however, and may be over-careful).