Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

I just hope it lasts, I think maybe those additives form that drink i took coursed this effect of worsening.

Why should we criticize you? All the opposite.
You are so brave taking the drug accepting side effects. And you pay for this on your own.
And in addition you inform us about your progress.
You are one of the ones keeping our hope up and running.
I wish you the drug is working for you on the long run and you will have silence again.

My tinnitus is so sensitive on studies even before it would go extreme, and on aspartame. I think I overdose my self with drinking only that juice not water. So we see, now it is kind to me it does not screech a bit of stress and it starts but 15 min later calm, so much that i don't hear him in a room and it is midnight.

 

[Hudson]

I just hope it lasts, I think maybe those additives form that drink i took coursed this effect of worsening.


My tinnitus is so sensitive on studies even before it would go extreme, and on aspartame. I think I overdose my self with drinking only that juice not water. So we see, now it is kind to me it does not screech a bit of stress and it starts but 15 min later calm, so much that i don't hear him in a room and it is midnight.

@Christian78 I was happy to hear about your tinnitus improvement yesterday. Can the same be said today as well?

Thanks

hudson

 

[Zimichael]

Hi all... Golly, what can I say, except a humble: "Thank you!" for all your best wishes and support for embarking on this Trobalt/Potiga trial. (Not going to post all those names as you know who you are, plus I know many others feel the same in spirit). And like you, I sure hope I don't have to wash out from crappy side effects too soon.

OK, I'm swamped right now with other 'life stuff' which is unusually thick! (Divorce just finalised = lots of required legal ring-around-the-rose-bush stuff; my tenant just left so major deal getting a new one that's not a stealth deadbeat scumbag; rental repairs to do, by me, plus my usual big time clean up before next moves in = on the weekend!!!; daughter was here for some weeks and just left = 'dad time' required; this thing called 'TT Forum' takes more than a little time to not even keep up with; then add on all the stuff getting my Potiga trial going; and.....You get the idea).
Ha, ha...Yeah, this is NOT how my life normally is, so please cut me a little slack right now with updates or getting back to anyone. Thanks in advance!

OK just some brief (yeah right!) info as I will not get to official progress report today. I want to wait until am at TID = 3 x a day...

~ I am going up in 50 mg jumps. Day one was 1 x 50 mg...Day two was 2 x 50 mg...Day 3 (today) will be 3 x 50 mg...and then I will hold for a minimum of three days there and evaluate. If OK, I will bump up another 50 mg, then another, then another...My initial goal is to reach 100 mg 3 x a day for total of 300 mg per day. Once there, if there, will wait and let it sink in for a while. No idea how long yet. (TBD = To Be Determined). I'm going by "feel".

~ If you did not see it on my post yesterday on "Retigabine Users" thread, some basic info is there. If you want more detail on what type of T (and H) I have and the "jumps up", etc., go to my username "Zimichael" and click on "information" in my "Profile". That will give you a lot more, and hopefully enough to avoid a lot of questions I might have to answer. And yes, "Guy Fawkes" night of November 5th. in 1956 is correct...The Brits and colonials will know what happens that night. ***[Sorry Markku I was 6 so if really want to be accurate can you change that from 1957 t0 1956? As you know I can't. Thank you!].
Oh, and as a "shtick" here...See how easy it is to just click on a username and get instant useful info on what kind of T someone has, etc. (even if the NSA can read it = I don't think they care about stuff like this)?! So "hint, hint"...if yours is 'empty'.....

~ Other meds. Some of you know I did a Clonazepam taper to get ready for the Potiga in as 'clean" a way as possible. 3 weeks ago I started going down from at least a year of constant use at 1 mg per night (even though it hardly worked for sleep). After < two weeks I managed a 50% taper to 0.5 mg a night, or one could say a 75% taper as often had periods of using 2 mg, as at least it was quasi effective at that dose. It was a 'she dog' of a process as I slept maybe 15% of my already crappy normal, in those 3 weeks. I was getting pretty goofy. However I have been holding at 0.5 mg a night for 10 days now and slowly my GABA beach bums started getting back to work prior to the addition of Potiga. It of it course, can induce tiredness, so that may 'help' my sleep...which would be fine as long as I don't become a zombie all day.
I say all this as there has been some 'concern' about GABA and Kv channels interaction. I wanted as little going on as possible on that front, even though the latest research seems to consider it a somewhat puzzling "non issue".
And yeah, I know that is a fast Benzo taper, but let's leave that out of this. It was fine. No increase in T volume. No big grinning "Reaper riding his Anxiety Sweat horse" either. That was welcome for a change!

~ I am already doing "timed voiding" = peeing regularly whether I wan to or not. Good students will know why.

OK, that's it. Sigh...as usual not as 'brief' as I thought. Also I will add more at a future date as there is some interesting Trobalt Trivia on the new 'Package insert Information Leaflet' that came in my box. Not important now and mainly for those who have been following this thread for a long time.

So please, cut me a little time slack here and just because I don't post as much as I usually do...see reasons above. I am not in hiding!

Take care, and again "Thank you!"... Best, Michael

 

[Rube]

Thanks for the update. I'm very excited for you and hope you see some positive results.

 

[Hudson]

Hi all... Golly, what can I say, except a humble: "Thank you!" for all your best wishes and support for embarking on this Trobalt/Potiga trial. (Not going to post all those names as you know who you are, plus I know many others feel the same in spirit). And like you, I sure hope I don't have to wash out from crappy side effects too soon.

OK, I'm swamped right now with other 'life stuff' which is unusually thick! (Divorce just finalised = lots of required legal ring-around-the-rose-bush stuff; my tenant just left so major deal getting a new one that's not a stealth deadbeat scumbag; rental repairs to do, by me, plus my usual big time clean up before next moves in = on the weekend!!!; daughter was here for some weeks and just left = 'dad time' required; this thing called 'TT Forum' takes more than a little time to not even keep up with; then add on all the stuff getting my Potiga trial going; and.....You get the idea).
Ha, ha...Yeah, this is NOT how my life normally is, so please cut me a little slack right now with updates or getting back to anyone. Thanks in advance!

OK just some brief (yeah right!) info as I will not get to official progress report today. I want to wait until am at TID = 3 x a day...

~ I am going up in 50 mg jumps. Day one was 1 x 50 mg...Day two was 2 x 50 mg...Day 3 (today) will be 3 x 50 mg...and then I will hold for a minimum of three days there and evaluate. If OK, I will bump up another 50 mg, then another, then another...My initial goal is to reach 100 mg 3 x a day for total of 300 mg per day. Once there, if there, will wait and let it sink in for a while. No idea how long yet. (TBD = To Be Determined). I'm going by "feel".

~ If you did not see it on my post yesterday on "Retigabine Users" thread, some basic info is there. If you want more detail on what type of T (and H) I have and the "jumps up", etc., go to my username "Zimichael" and click on "information" in my "Profile". That will give you a lot more, and hopefully enough to avoid a lot of questions I might have to answer. And yes, "Guy Fawkes" night of November 5th. in 1956 is correct...The Brits and colonials will know what happens that night. ***[Sorry Markku I was 6 so if really want to be accurate can you change that from 1957 t0 1956? As you know I can't. Thank you!].
Oh, and as a "shtick" here...See how easy it is to just click on a username and get instant useful info on what kind of T someone has, etc. (even if the NSA can read it = I don't think they care about stuff like this)?! So "hint, hint"...if yours is 'empty'.....

~ Other meds. Some of you know I did a Clonazepam taper to get ready for the Potiga in as 'clean" a way as possible. 3 weeks ago I started going down from at least a year of constant use at 1 mg per night (even though it hardly worked for sleep). After < two weeks I managed a 50% taper to 0.5 mg a night, or one could say a 75% taper as often had periods of using 2 mg, as at least it was quasi effective at that dose. It was a 'she dog' of a process as I slept maybe 15% of my already crappy normal, in those 3 weeks. I was getting pretty goofy. However I have been holding at 0.5 mg a night for 10 days now and slowly my GABA beach bums started getting back to work prior to the addition of Potiga. It of it course, can induce tiredness, so that may 'help' my sleep...which would be fine as long as I don't become a zombie all day.
I say all this as there has been some 'concern' about GABA and Kv channels interaction. I wanted as little going on as possible on that front, even though the latest research seems to consider it a somewhat puzzling "non issue".
And yeah, I know that is a fast Benzo taper, but let's leave that out of this. It was fine. No increase in T volume. No big grinning "Reaper riding his Anxiety Sweat horse" either. That was welcome for a change!

~ I am already doing "timed voiding" = peeing regularly whether I wan to or not. Good students will know why.

OK, that's it. Sigh...as usual not as 'brief' as I thought. Also I will add more at a future date as there is some interesting Trobalt Trivia on the new 'Package insert Information Leaflet' that came in my box. Not important now and mainly for those who have been following this thread for a long time.

So please, cut me a little time slack here and just because I don't post as much as I usually do...see reasons above. I am not in hiding!

Take care, and again "Thank you!"... Best, Michael

@Zimichael , thank you for the update. I'm glad to hear that you've been able to reduce your clonazepam dosage relatively well without too many side effects. I'm also quite interested to hear about improvements in your tinnitus that you see, given the length of time you have had the condition. If it can help you in any way, I think it will have a good capacity to help a large contingent of us chronic tinnitus folks.

It seems a decent chunk of people are receiving a benefit from retigabine so far. My next question will be, of course, that if we benefit from using retigabine, will we have to continually use it or will the effects last once we taper off?

 

[william2]

i also hope to be starting retigabine soon.

wouldn't it be wonderful if somebody with chronic tinnitus was cured by retigabine.
it could happen, maybe it already is happening.

 

[dan]

i also hope to be starting retigabine soon.

wouldn't it be wonderful if somebody with chronic tinnitus was cured by retigabine.
it could happen, maybe it already is happening.

No, you hope to start Autifony soon! (inside joke)

 

[Jay M]

Has the Aspartame - Tinnitus connection been firmly established? Or is it yet another unverified rumor or myth regarding the "dangers of aspartame".

I think its one molecule from being rat poison if I remember reading correctly.

 

[Rube]

@Zimichael , thank you for the update. I'm glad to hear that you've been able to reduce your clonazepam dosage relatively well without too many side effects. I'm also quite interested to hear about improvements in your tinnitus that you see, given the length of time you have had the condition. If it can help you in any way, I think it will have a good capacity to help a large contingent of us chronic tinnitus folks.

It seems a decent chunk of people are receiving a benefit from retigabine so far. My next question will be, of course, that if we benefit from using retigabine, will we have to continually use it or will the effects last once we taper off?

@Hudson - thats the million dollar question. I guess we'll know once some of the members who are taking it start tapering off the dosage. I really hope it wont come back for those guys! it'll be good news for all of us on the fence as well.

 

[Hudson]

@Hudson - thats the million dollar question. I guess we'll know once some of the members who are taking it start tapering off the dosage. I really hope it wont come back for those guys! it'll be good news for all of us on the fence as well.

I suppose it wouldn't be heart breaking if it did come back. Disappointing, sure. Heartbreaking, no. We should not expect this to be a miracle drug that cures tinnitus. If it does, that will be great. However, I'm betting that the tinnitus may come back in one form or another. What that leaves us with, then, is waiting for a drug manufacturer to create a drug with comparable effectiveness which minimizes the long term side effects. I can take a drug forever if I need to, but I don't want it to totally mess up my life. That being said, I'm supposed to be getting a call from the Neurologist's office here soon about my own appointment.

 

[Rube]

I suppose it wouldn't be heart breaking if it did come back. Disappointing, sure. Heartbreaking, no. We should not expect this to be a miracle drug that cures tinnitus. If it does, that will be great. However, I'm betting that the tinnitus may come back in one form or another. What that leaves us with, then, is waiting for a drug manufacturer to create a drug with comparable effectiveness which minimizes the long term side effects. I can take a drug forever if I need to, but I don't want it to totally mess up my life. That being said, I'm supposed to be getting a call from the Neurologist's office here soon about my own appointment.

@Hudson - agreed it would be disappointing. But it does show that the research is on the right track, hopefully the AUT00063 will be the real deal, when/if that makes it out of trials. I received a response from Autifony that they will expand the trials to the US if they have positive results in Phase IIa. You can be sure I will be on that line!
At least that's something to look forward to and to be hopeful for.

 

[rtwombly]

@Hudson - thats the million dollar question. I guess we'll know once some of the members who are taking it start tapering off the dosage. I really hope it wont come back for those guys! it'll be good news for all of us on the fence as well.

Mpt should be on 700mg if he's stuck to his tapering off schedule. Hopefully he'll have good news for us.

Based on Christian78's experience, I'm especially interested in if Mpt stays quiet at 600mg. That would indicate that you can at least reduce the dosage after some months at a higher level.

 

[Christian78]

@Christian78 I was happy to hear about your tinnitus improvement yesterday. Can the same be said today as well?

Thanks

hudson

Today was OK, i was out, in gym, and raiding bicycle, walking around city and listening music, went to shops walked slowly it was really law.

 

[Codaz]

Hi all...

Did you notice any effect on the H with the start of Potiga? T is hell, but H is even worse.

 

[111]

Someone else looking into this style of medication, but different target area

http://www.grunenthal.com/grt-web/G...ed_potassium_channels_(KCNQ2-3)/124700103.jsp

 

[65vwbus]

Someone else looking into this style of medication, but different target area

http://www.grunenthal.com/grt-web/G...ed_potassium_channels_(KCNQ2-3)/124700103.jsp

That gives me hope that one day I can switch off my neuropathic face pain. It started exactly the same time as the tinnitus so they must be linked.

 

[Johno]

Did you notice any effect on the H with the start of Potiga? T is hell, but H is even worse.

Yes, my H is slightly better. But Im still on low dosage.

 

[william2]

Someone else looking into this style of medication, but different target area

http://www.grunenthal.com/grt-web/G...ed_potassium_channels_(KCNQ2-3)/124700103.jsp

Great find, thanks.

I've pasted the text here. it is just so relevant to all of us:
"Previously found to be involved in special forms of epilepsy, heteromeric KCNQ2/3 potassium channels have now revealed their potential to be attractive targets for the treatment of chronic neuropathic pain. KCNQ2/3 channels are not only found in neuronal circuits involved in seizure generation but are also expressed in neurons of the pain pathway. While under normal conditions basally active KCNQ2/3 channels determine cellular excitability by stabilizing the membrane potential, their activation by KCNQ channel openers prevents states of neuronal hyperexcitability. Such states are a hallmark of a number of pathological conditions of the nervous system such as chronic pain, epilepsy and migraine." and tinnitus.

 

[Hengist]

I have been taking it for only a couple of days but I have feeling of cold on left side of my body, sudden bouts of tiredness which come and go and it seems that my tinnitus got worse and is in constant spike ever since the first pill and prior to taking it I had a whole week at least of fairly non-intrusive stable tinnitus. Also when I have spikes the sound is louder in the left ear while normally my tinnitus is like 50% louder in my right ear. This may be related to left sided feeling of cold.

Now the spike could be just random and not related to the drug although my gut feeling says differently and it may be related to the fact that I stopped taking NAC for a day or two prior but than why isn't it going away since I am now back to taking it. Benryu said that the sledgehammer effect of retigabine which does not target the 3 but 7 channel may work for some but may not for others... could it also make it worse?

I am not sure what I will do, I am fairly impulsive at this point.

 

[Hudson]

I have been taking it for only a couple of days but I have feeling of cold on left side of my body, sudden bouts of tiredness which come and go and it seems that my tinnitus got worse and is in constant spike ever since the first pill and prior to taking it I had a whole week at least of fairly non-intrusive stable tinnitus. Also when I have spikes the sound is louder in the left ear while normally my tinnitus is like 50% louder in my right ear. This may be related to left sided feeling of cold.

Now the spike could be just random and not related to the drug although my gut feeling says differently and it may be related to the fact that I stopped taking NAC for a day or two prior but than why isn't it going away since I am now back to taking it. Benryu said that the sledgehammer effect of retigabine which does not target the 3 but 7 channel may work for some but may not for others... could it also make it worse?

I am not sure what I will do, I am fairly impulsive at this point.

I would stick with it for at least a while longer. It is hard to say conclusively that it is making it worse. Often times, anti-depressants may make tinnitus worse for a few days when you begin taking them. In the same way that AM-101 often causes tinnitus to temporarily worsen before it gets better I am inclined to think that retigabine can have that affect as well. Of course I'm just speculating, but that's me.

 

[Hengist]

I would stick with it for at least a while longer. It is hard to say conclusively that it is making it worse. Often times, anti-depressants may make tinnitus worse for a few days when you begin taking them. In the same way that AM-101 often causes tinnitus to temporarily worsen before it gets better I am inclined to think that retigabine can have that affect as well. Of course I'm just speculating, but that's me.

It would be interesting to hear what others have to say about this as all have reported experiances only after a week or more, maybe they also had this worsening. I also planned to wait longer but just could not keep it to myself. I am frustrated about this idiotic turn of events.

 

[Zimichael]

[Ooops... that was 111's find. 'Quotes' still like to mess with me.]

Sheise...Another company we can't invest in:

The Grünenthal Group: International, successful, innovative
The Grünenthal Group is an independent, family-owned, international research-based pharmaceutical company headquartered in Aachen, Germany.

 

[Johno]

Hengist: How is your dosage? Looks like your T is still in acute phase, it may be more reactive than in chronic cases. But Christian78 with his chronic T has very good and very bad days too. For me (3x100mg now) it is not very effective, but for example, today i have quiet niece day. And spikes of transient spontaneous T almost disappeared with first day of taking a pill.

Try to take it 1month and then we will see...

 

[Hengist]

Hengist: How is your dosage? Looks like your T is still in acute phase, it may be more reactive than in chronic cases. But Christian78 with his chronic T has very good and very bad days too. For me (3x100mg now) it is not very effective, but for example, today i have quiet niece day. And spikes of transient spontaneous T almost disappeared with first day of taking a pill.

Try to take it 1month and then we will see...

It is very low dosage 3x50mg but I do not see any positive effect, but immediate sideeffects! It was not an hour after I took it and I experianced sideeffects... maybe the batch is corrupted. I said I have another friend with tinnitus so I will give him a try with the medicine, the drug will expire in mid 2015 and that is weird as most of my medication will last for the next 5-6 years... this looks to last only half a year and maybe a bit more.

 

[Johno]

It is very low dosage 3x50mg but I do not see any positive effect, but immediate sideeffects!

My only side effect was mild problem with bladder, but after week it disappeared.

 

[Hengist]

My only side effect was mild problem with bladder, but after week it disappeared.

When will your trobalt expire?

 

[Johno]

When will your trobalt expire?

05 - 2015

 

[Hengist]

05 - 2015

Same here, 2v5y serie?

 

[Markku]

I wouldn't worry too much about the next year's expiration date.

The drug should still be potent.

From:
http://www.health.harvard.edu/fhg/updates/update1103a.shtml

Most of what is known about drug expiration dates comes from a study conducted by the Food and Drug Administration at the request of the military. With a large and expensive stockpile of drugs, the military faced tossing out and replacing its drugs every few years. What they found from the study is 90% of more than 100 drugs, both prescription and over-the-counter, were perfectly good to use even 15 years after the expiration date.

So the expiration date doesn't really indicate a point at which the medication is no longer effective or has become unsafe to use. Medical authorities state expired drugs are safe to take, even those that expired years ago. A rare exception to this may be tetracycline, but the report on this is controversial among researchers. It's true the effectiveness of a drug may decrease over time, but much of the original potency still remains even a decade after the expiration date. Excluding nitroglycerin, insulin, and liquid antibiotics, most medications are as long-lasting as the ones tested by the military. Placing a medication in a cool place, such as a refrigerator, will help a drug remain potent for many years.

Is the expiration date a marketing ploy by drug manufacturers, to keep you restocking your medicine cabinet and their pockets regularly? You can look at it that way. Or you can also look at it this way: The expiration dates are very conservative to ensure you get everything you paid for. And, really, if a drug manufacturer had to do expiration-date testing for longer periods it would slow their ability to bring you new and improved formulations.

The next time you face the drug expiration date dilemma, consider what you've learned here. If the expiration date passed a few years ago and it's important that your drug is absolutely 100% effective, you might want to consider buying a new bottle. And if you have any questions about the safety or effectiveness of any drug, ask your pharmacist. He or she is a great resource when it comes to getting more information about your medications.

 

[Hengist]

As I was involved in various questionable activities concerning drugs I know for a fact that some drugs which are close or past expiration can cause weird sideeffects, they can even be used as a weapon if you can get expired version of a drug someone actually uses into their system.