Retigabine (Trobalt, Potiga) — General Discussion

They are worse and i get feeling that are going worse. I lost 2 thing, hand cream and cup that i use, i probably threw them in garbage. Or ghost took them. It is hard to remember 5 digits. I have all OK but amnesia is killing me, all other i survive, blurred view, orange urine sometimes, drunk walking, problem to write after taking pill for 1 h, sometimes lighter for 4 h, I would rather take pills every 4, not 8 so i dont get strong hits.

Try drop it from 200 to 150. I am still on 100, and i feel very mild amnesia, nothing horrible. But my bodyweight is probably higher - 95Kg (209 pounds) And how about your T?
 
@Christian78 is the decrease in your T at this point worth the side effects? i am not a doctor but like u mentioned it might be better to space the dose out evenly over the course of the day?
are you taking anything else along with the trobalt? im not criticizing or diagnosing anything, i am just curious
 
Try drop it from 200 to 150. I am still on 100, and i feel very mild amnesia, nothing horrible. But my bodyweight is probably higher - 95Kg (209 pounds) And how about your T?
We have been at the same dosage and I feel like we are also getting similar effects. I feel like I may have gained a few pounds as well. I am very hesitant to raise my dosage. Not only because of the potential side effects but the cost of the medication is not sustainable for me . I really need to get on the Canadian pharmacy thing asap.
 
We have been at the same dosage and I feel like we are also getting similar effects. I feel like I may have gained a few pounds as well. I am very hesitant to raise my dosage. Not only because of the potential side effects but the cost of the medication is not sustainable for me . I really need to get on the Canadian pharmacy thing asap.
Do you believe you are getting enough benefit to continue with long term use? Or still too early to make that call?
 
@Johno, from reading @Christian78 status update, he is on 300mgX3.

@SoulStation, I think @Johno was implying that his heavier body weight might be ameliorating the side effects because he might require a bigger dosage than Christian, all else being equal. I don't think he has gained weight from the drug. Is there anything else that you are doing that could account for the weight gain, or could it just be incidental?
 
@Johno, from reading @Christian78 status update, he is on 300mgX3.

@SoulStation, I think @Johno was implying that his heavier body weight might be ameliorating the side effects because he might require a bigger dosage than Christian, all things being equal. I don't think he has gained weight from the drug. Is there anything else that you are doing that could account for the weight gain, or could it just be incidental?
I think it could be coincidence because I am a bit sluggish and not running as much. But I am also going through some career challenges now too.
 
@Johno, from reading @Christian78 status update, he is on 300mgX3.

@SoulStation, I think @Johno was implying that his heavier body weight might be ameliorating the side effects because he might require a bigger dosage than Christian, all else being equal.
- exactly (y)

300x3? I forgot :D Anyway, I am curious how his T is now, because he has some problems with spikes.

Yes, i am bigger and heavier than Ch78 ( i estimate his weight from photo to 70-75 kg ). No weight gain from retigabine, I have 10kg overweight because I like chocolate :cool::p
 
@Zimichael I am aware of these mixed messages. The sole reason I mentioned this in my text was that this doctor looked up retigabine to see if he could prescribe it the first time I mentioned it, and he immediately turned towards the hearth issue. I realise my text suggests that there are no heart issues, but I want this specific doctor to see that since retigabine does not target 7.1, it does not fall under that specific danger. The heart problems seem to affect people that already have heart rhythm issues, something you're probably aware of if you have them.

I would love to know more about these heart related problems as my doctor seemed to be most worried about that aspect.

The australian report is very informative, but I recommend reading this as well (posted before) :
http://onlinelibrary.wiley.com/doi/10.1111/j.1476-5381.2009.00111.x/full

"Importantly, retigabine does not enhance Kv7.1 currents. This difference was exploited to identify the binding site, as a hydrophobic pocket at the cytoplasmic ends of the S5–S6 domains of the Kv7 channel protein, with the obligatory presence of a tryptophan in the S5 domain"

Basically retigabine requires tryptophan in the S5 domain, which is absent in Kv7.1 but is present in Kv7.2-Kv7.5.
 
Yesterday i used 200 mg, and after 4 h 100 mg. It seem that way one get less side effect.

Last night I took it before sleep at 00:00 and this morning took pills again and some times after it just blow me I was i shock, I see but i dont know what it , i got frozen i time, i can find word to speak to my self, I hardly go to bed. Did I took of my t shirt, or what happen I don know. It was wipe out of my memory. 2nd worst hit. I lay on bad tee ceiling white, radio is playing, i hear it but i dont know what is it, just me on bed. Cold i took blanket on me. It passed 10 minutes. Then I could say it was radio playing. 5 min later went up slowly. It would scare one, it is like mushrooms (i never used it but i hear what people say). <I am shocked how it can be.
 
@Johno, from reading @Christian78 status update, he is on 300mgX3.

@SoulStation, I think @Johno was implying that his heavier body weight might be ameliorating the side effects because he might require a bigger dosage than Christian, all else being equal. I don't think he has gained weight from the drug. Is there anything else that you are doing that could account for the weight gain, or could it just be incidental?

My weight was 92,5 kg , I got it after May 2014 when my tinnitus attacked, now is 83 kg, I am 175 cm, but i have some muscular, especially on legs...

plus every evening Retigabine dosage opens appetite to go to eat something, but I dont have anything sweet in house, but then i make salad and tuna in water.
 
Yesterday i used 200 mg, and after 4 h 100 mg. It seem that way one get less side effect.

Last night I took it before sleep at 00:00 and this morning took pills again and some times after it just blow me I was i shock, I see but i dont know what it , i got frozen i time, i can find word to speak to my self, I hardly go to bed. Did I took of my t shirt, or what happen I don know. It was wipe out of my memory. 2nd worst hit. I lay on bad tee ceiling white, radio is playing, i hear it but i dont know what is it, just me on bed. Cold i took blanket on me. It passed 10 minutes. Then I could say it was radio playing. 5 min later went up slowly. It would scare one, it is like mushrooms (i never used it but i hear what people say). <I am shocked how it can be.
I am no neuro-scientist but from what I can make out, it sounds like the dosages at your specified times are knocking you out, almost as if you have too much of it too quickly in your system. This is in no way criticism of what you are attempting or how you are doing it. I know you are following the benyru dosage schedule.

However, it is very scary (and saddening) to read that you are having these "white-outs" and no memory of it, not long after you take the meds. I wish i could say to you "speak to a doctor" about this, but all they would say is stop taking the meds, which is no help yo you at all. I hope today is a better day for you Christian.
 
@Christian78 is the decrease in your T at this point worth the side effects? i am not a doctor but like u mentioned it might be better to space the dose out evenly over the course of the day?
are you taking anything else along with the trobalt? im not criticizing or diagnosing anything, i am just curious
sleeping pill before sleep i take, but as we all know after 8h dosage fall to 300mg in blood then we take and jupes to 600 that fall after 8h to 300 and so again, i am waiting to tuesday to take 50mg, so i get 250mg, or minima 150mg every 4h
 
Well, life continues while I sleep (or attempt to = back to my normal crappy version last two nights) here in CA. You guys are bringing up stuff that I guess I should comment on as well. However, seeing as everyone is probably sick to death of my long posts I figured a picture that captures my condition rather well may be appropriate for an interim change...and maybe Christian's too??? :huganimation:
It is the third of four by Thomas Cole, aptly called: "The Journey of Life" (Google for images). This is number three. My picture is really between this one and number four, as my hair is greyer than this character's.

I will be be back later with usual laundry list of blather after get to PM's first, and some other stuff.
Z'm.

2014-09-27_0553.png
 
We who use Retigabine we take it every 8 h 300mgx3. That said we have 300 mg in blood, and when we take 300mg it jumps to 600 and then fall to 300, and jump again. I found out if we take it every 4h 150mg, or 100 mg +200 that side effect are much less. Can anyone try and see does it work for you.
 
We who use Retigabine we take it every 8 h 300mgx3. That said we have 300 mg in blood, and when we take 300mg it jumps to 600 and then fall to 300, and jump again. I found out if we take it every 4h 150mg, or 100 mg +200 that side effect are much less. Can anyone try and see does it work for you.
@Christian78 did spacing lower dosages closer together reduce ALL the side effects you were experiencing?
heck....it might be a pain in the ass but if it helps, then take a lower does every 4 hours.
 
Ummmmm...Someone is going to have to throw a digital tomato at me I'm afraid, as I promised to get back later with a more detailed update. Sorry, I'm a bit burned out and will do it tomorrow! However, I will post a "Users Progress Report" right now instead. So only half a tomato...and will do some "house-cleaning" here.

@locoyeti ...Thanks much for the source there on heart stuff, and explanation. I may get to it later, but at this time I have come to the conclusion that there is so much detail on the workings of the Kv channels, that I would need to spend vastly greater amounts of time and study than I want to, to do it justice. The "variations of viewpoint" do seem to correlate quite a lot with date though. Newer is better, but not always - like the gaping holes in the 'recent' 2013 Australian application!

On the body weight/dose thing... Here is detail [below] from way back in July (post #316) where Matt and I were discussing this. My relevant conclusion was, that if we used a crude "body weight system" (as is used with a number of meds) to calculate plasma load, I would need 675 mg/day total, to = Matt's dose of 900 mg...This is why my goal has been to reach 600 mg a day and stop there......Yeah, if you noticed, I am now at 450 mg/day total.

Matt...thanks for the updates/clarifications, and weight. *[edit...Matt weighs 185 pounds]

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..... *[edit...Etc., etc.]

OK...more detail on my "Potiga/Trobalt" condition tomorrow.

Best, Zimichael
 
Hi Zimichael. Any improvement in your T now that you are aiming for your desired dosage?

Was replying to a Conv. but will catch this before bed... Steve, see my "Users Update" from today if you missed it.
Short answer = No...T > 10%, and H > 25% to 50%, but latter hard to nail down due to intense avoidance of potential damaging sound levels. (More usable details tomorrow + see the Update).

Best, Zim'.
 
@Zimichael how are you spacing that dose out during the day. 150mg in 3 doses?

Rube...Yes! 150 mg @ 5:00 am; 150 mg @ 1:00 pm; 150 mg @ 9:00 pm...except I often space out - like a moment ago because was typing this. "Gaaahhh!!! It's 9:40 pm and I forgot"...then I got up and remembered I took the dose at 8:55 pm in case I would forget!!! Ha, ha...Geez, maybe that isn't funny actually.

Zzzzzzzzzzz. M
 
@Christian78 did spacing lower dosages closer together reduce ALL the side effects you were experiencing?
heck....it might be a pain in the ass but if it helps, then take a lower does every 4 hours.

as you say "heck" i am considering taking it even every 2 h, it is not important if you miss dosage, point is that you take it totally in 8 h, and as they say in the manual If you have missed dosage it is OK, take it as soon as possible, but it is 3 h before next dosage then you should not take it. (it is all about half life), but you can take it even if it 3 h before because you will not use in 3 h whole dosage.

Entire point is you take your dosage now when you have 180 mg in blood (you forgot to take your dosage) and then you have 480 and in 3 h you take normal time dosage you get to 450+300= 750 or more, the don't want it, they concentration will stay under 600 mg spike.

I do 100+ 200 spacing, so it makes is less side effects.

BTW: I am considering going to 250 mg (from 300)
 
*This post is a more detailed adjunct to (addition to) the regular "Retigabine – User Experiences" progress form posted on that thread yesterday.

First, a definition c/o Google: placebo ~ noun
- A harmless pill, medicine, or procedure prescribed more for the psychological benefit to the patient than for any physiological effect.
- A substance that has no therapeutic effect, used as a control in testing new drugs.
- A measure designed merely to calm or please someone.


Nothing I am reporting, or would report (like say - 'decreased tinnitus'), is a 'placebo effect'. It has been conclusively proven that I do not "placebo" c/o many examples in 1993-1998 and 2004-2008. No reason for that to have changed.

OK, now for a more detailed report on my Potiga/Trobalt use, to date:

1. Since Friday night [09/26/14] I have been on a daily Trobalt dose of 150 mg TID (3 x day) Dosage times are…5:00 am, 1:00 pm, 9:00 pm = Total of 450 mg/day.

Yes, I am going up a lot faster than I thought. Reason being – side effects apart from > T & H have been 'acceptable'. With the 2 week shipping delay, the math requires I need to know fast if I am going to get anywhere with this med. I have to reserve enough pills to taper off properly.

2. With regard to the increased "hyperacusis" I am experiencing. Here are some examples:

a). Phone-calls...I always use speaker-phone as have not been able to put a hand-held phone to my ear since increased T in 2012. I get "inner ear bruised feeling" after a short time. *(This sensation is a pre-cursor to more damage, believe me!). OK, my son called early last Tuesday [09/23/14], so yes...still at the start of 100 mg x 3 period. I kept having to step back from the phone, ending at the far wall of my room to talk, plus lower the volume setting on phone base to the minimum. I did not have to do this before Trobalt, and would often bump up volume to hear better.

b). Movies...Normally on my system I have volume for movies set between 45-55, and sometimes a bit more if not a "big bang" action movie. Friday evening [09/26/14], yes…before increased to 150 mg, I watched a 'normal' DVD for first time in a approx 10 days. I had volume down to 20 and used subtitles as it was too soft to hear dialogue properly. After the two hour movie, even at this low level, I realized my T volume was much louder and had a sense of "mild bruising" in ears (Shit!!!). T volume slowly went down to 'normal (the now "9.1") baseline' overnight. This is a somewhat "numerically objective" measure of the H...All this is real. No placebo. No doubt about it.

The increased H seems to be more temporal (time exposure) related than very brief loudish volume spike related. Like banging a dish in the sink seems the same as before. No new issues there. However, good old Stapedius Reflex may be accounting for this of course.

I am avoiding 'sound' big time, and protecting with full plugs when do a hit-and-run grocery trip to town…Been there, done that! 2006 and 2012, meds + sound = disaster!

3. Weight…Trobalt is not increasing my weight. I am struggling to stay at 140 pounds and have lost three to five pounds, as am down to 137 right now.

4. That sense of "emotional fragility" comes and goes. At present I feel fine. It appears to be random, though potentially linked to the Trobalt as the stuff does have classical "suicide" (thus depression) warning on the insert sheet. I do think I am getting more exhausted with all this though as am not as gung-ho about doing research as I was a week ago.

5. Interesting that the increased dose has not hit me that bad (yet) with fatigue, or later with better sleep? No idea why not, as have had some wiped out periods earlier over past two weeks.

6. The mistakes typing and forgetfulness seem to get less after a few days at a higher dose, so at this point I think it is mainly a temporary phenomenon. Sure hope so! Still not as good at keyboard today as usual.

OK, I think that's about it on 'effects' for now.

At this point I have two options. If I decide this is not going to do much for me, I have sufficient pills on hand to carry on for a while then taper off. If I continue and increase dose, it looks like I am not going to be able to avoid ordering another batch of pills Monday, unless I do a pretty fast taper and a very short interval at the dose I was heading for = 600 mg a day. Currently I am getting less optimistic about a positive effect on me as in the past I consistently reacted to meds, (and particularly "Pharma" meds v. more "natural/alternative" meds) much quicker, and at lower doses, than I or my practitioners would expect.

I'll end with another quote. This was from Matt on the very first page of this enormous thread. No doubt you will see the relevance:

I have had a massive improvement a few days after getting on retigabine, but I wanted to give it awhile before reporting anything to reduce the chance that I'm reporting on a placebo effect. I've been taking it exactly two weeks as of today, and I can pretty confidently say that the improvement that I've seen is not a placebo effect or habituation…*[Edit] If anyone is wondering I am taking 300 mg three times a day.

Best to all… Zimichael
 
*This post is a more detailed adjunct to (addition to) the regular "Retigabine – User Experiences" progress form posted on that thread yesterday.

First, a definition c/o Google: placebo ~ noun
- A harmless pill, medicine, or procedure prescribed more for the psychological benefit to the patient than for any physiological effect.
- A substance that has no therapeutic effect, used as a control in testing new drugs.
- A measure designed merely to calm or please someone.


Nothing I am reporting, or would report (like say - 'decreased tinnitus'), is a 'placebo effect'. It has been conclusively proven that I do not "placebo" c/o many examples in 1993-1998 and 2004-2008. No reason for that to have changed.

OK, now for a more detailed report on my Potiga/Trobalt use, to date:

1. Since Friday night [09/26/14] I have been on a daily Trobalt dose of 150 mg TID (3 x day) Dosage times are…5:00 am, 1:00 pm, 9:00 pm = Total of 450 mg/day.

Yes, I am going up a lot faster than I thought. Reason being – side effects apart from > T & H have been 'acceptable'. With the 2 week shipping delay, the math requires I need to know fast if I am going to get anywhere with this med. I have to reserve enough pills to taper off properly.

2. With regard to the increased "hyperacusis" I am experiencing. Here are some examples:

a). Phone-calls...I always use speaker-phone as have not been able to put a hand-held phone to my ear since increased T in 2012. I get "inner ear bruised feeling" after a short time. *(This sensation is a pre-cursor to more damage, believe me!). OK, my son called early last Tuesday [09/23/14], so yes...still at the start of 100 mg x 3 period. I kept having to step back from the phone, ending at the far wall of my room to talk, plus lower the volume setting on phone base to the minimum. I did not have to do this before Trobalt, and would often bump up volume to hear better.

b). Movies...Normally on my system I have volume for movies set between 45-55, and sometimes a bit more if not a "big bang" action movie. Friday evening [09/26/14], yes…before increased to 150 mg, I watched a 'normal' DVD for first time in a approx 10 days. I had volume down to 20 and used subtitles as it was too soft to hear dialogue properly. After the two hour movie, even at this low level, I realized my T volume was much louder and had a sense of "mild bruising" in ears (Shit!!!). T volume slowly went down to 'normal (the now "9.1") baseline' overnight. This is a somewhat "numerically objective" measure of the H...All this is real. No placebo. No doubt about it.

The increased H seems to be more temporal (time exposure) related than very brief loudish volume spike related. Like banging a dish in the sink seems the same as before. No new issues there. However, good old Stapedius Reflex may be accounting for this of course.

I am avoiding 'sound' big time, and protecting with full plugs when do a hit-and-run grocery trip to town…Been there, done that! 2006 and 2012, meds + sound = disaster!

3. Weight…Trobalt is not increasing my weight. I am struggling to stay at 140 pounds and have lost three to five pounds, as am down to 137 right now.

4. That sense of "emotional fragility" comes and goes. At present I feel fine. It appears to be random, though potentially linked to the Trobalt as the stuff does have classical "suicide" (thus depression) warning on the insert sheet. I do think I am getting more exhausted with all this though as am not as gung-ho about doing research as I was a week ago.

5. Interesting that the increased dose has not hit me that bad (yet) with fatigue, or later with better sleep? No idea why not, as have had some wiped out periods earlier over past two weeks.

6. The mistakes typing and forgetfulness seem to get less after a few days at a higher dose, so at this point I think it is mainly a temporary phenomenon. Sure hope so! Still not as good at keyboard today as usual.

OK, I think that's about it on 'effects' for now.

At this point I have two options. If I decide this is not going to do much for me, I have sufficient pills on hand to carry on for a while then taper off. If I continue and increase dose, it looks like I am not going to be able to avoid ordering another batch of pills Monday, unless I do a pretty fast taper and a very short interval at the dose I was heading for = 600 mg a day. Currently I am getting less optimistic about a positive effect on me as in the past I consistently reacted to meds, (and particularly "Pharma" meds v. more "natural/alternative" meds) much quicker, and at lower doses, than I or my practitioners would expect.

I'll end with another quote. This was from Matt on the very first page of this enormous thread. No doubt you will see the relevance:

I have had a massive improvement a few days after getting on retigabine, but I wanted to give it awhile before reporting anything to reduce the chance that I'm reporting on a placebo effect. I've been taking it exactly two weeks as of today, and I can pretty confidently say that the improvement that I've seen is not a placebo effect or habituation…*[Edit] If anyone is wondering I am taking 300 mg three times a day.

Best to all… Zimichael
Hi Zimichael. Sorry if i missed it. Are you saying your T is going up or down? Thanks.
 
Hi Zimichael. Sorry if i missed it. Are you saying your T is going up or down? Thanks.

Ummmmmmmmmmm...Steve, did you read the Progress Report??? If it is not clear in there then maybe I am more out of it than I think. Here you go:

Current Tinnitus Severity:
9 out of 10

Changes in Tinnitus:
None. One day increase by about 15% of current level last Monday (9/22/2014), then back to baseline volume. Perhaps a little louder, but see above. No change in tone. *[Will add more detail in post tomorrow].


Thus, no real change in my tinnitus from the current baseline of about a "9.1"...which is a sort of 10% increase in T volume from starting baseline before Trobalt.
I mentioned in a prior post that this 10% increase was more likely a "spillover effect" from the increased H, rather than a 'real increase' in the T volume itself. Hard to tell...However the increased T volume last Monday [9/22/2014] was indeed a one day 'for sure' increase in real volume. Posted that at the time on Tuesday morning, but another long post :rolleyes: so maybe you missed it.

Hope that is clear? Best, Zimichael
 
2 Interesting articles going into detail on these kv7 channels.


Driving With No Brakes: Molecular Pathophysiology of Kv7 Potassium Channels

http://physiologyonline.physiology.org/content/nips/26/5/365.full.pdf




Pathogenic plasticity of Kv7.2/3 channel activity is essential for the induction of tinnitus

http://www.pnas.org/content/110/24/9980.full.html

The 2nd link says that they develop drugs to avoid development of T.
And also a drug that needs taking after onset before T becomes irreversible.
Benryu said, it will be effective also for long-time sufferers. So I hope everyone can benefit.
 
The side effects Christian78 describes would make me unable to do work, at all if they would be the same. I take my 2/10 tinnitus over those side effects.

But the TMJ hurts and so is the H. I hope Retigabine does something for the H as well.
 
The 2nd link says that they develop drugs to avoid development of T.
And also a drug that needs taking after onset before T becomes irreversible.
Benryu said, it will be effective also for long-time sufferers. So I hope everyone can benefit.

Avoid development of T, how would that work? I woke up with it full force, 5,5 months ago.
 

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