Retigabine (Trobalt, Potiga) — General Discussion

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!

 

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?

 

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.

 

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.

 

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

 

@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.

 

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

 

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.

 

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.

 

@benryu - are you started on Trobalt yet?

 

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?

 

"fuch" Is that a Swedish word for something?

 

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

 

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

 

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

 

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.

 

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..

 

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/

 

@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.

 

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

 

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...

 

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.

 

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

 

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.

 

@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).

 

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

 

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).