Trobalt/Potiga

Information about how to manage or reduce the severity of BFS symptoms

Moderators: JohnV, Arron, garym

Trobalt/Potiga

Postby nonstop on September 17th, 2011, 8:12 am

Has any of our Canadian or European members tried the new K+ channel opener Trobalt/Potiga (ergozine)?

If so, what was your impressions?

I am waiting ever so patiently for it to show up on the shelves of my CVS.
nonstop
Member
Member
 
Posts: 40
Joined: January 31st, 2011, 5:20 am

Re: Trobalt/Potiga

Postby chrissi on September 17th, 2011, 11:16 am

Not yet. I might ask my neuro in october about it as I had to stop the tegretol. We will have to look for something different then.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: Trobalt/Potiga

Postby chrissi on September 17th, 2011, 11:29 am

Hmm, I just read the paper of it...all the side effekts are actually the symptoms I want to treat....twitching, tremors, paraesthesia..... :?
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: Trobalt/Potiga

Postby chicagobfs on May 17th, 2012, 10:19 pm

Hey nonstop did you try it???
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: Trobalt/Potiga

Postby mike fla on May 21st, 2012, 11:22 am

I asked my Doctor to look into it 6 months ago. She was concerned about the side effects and did not think it would ge a good medicine to try. I think she said that it can mess with you heart rythms so you have to monitor that closely.
User avatar
mike fla
Selfless giver of time
Selfless giver of time
 
Posts: 202
Joined: October 26th, 2011, 11:03 am

Re: Trobalt/Potiga

Postby chicagobfs on May 21st, 2012, 12:25 pm

Boooo that's not nice :? Hard to find any info online, no reviews...
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: Trobalt/Potiga

Postby raindog on May 22nd, 2012, 3:33 pm

chicagobfs wrote:Boooo that's not nice :? Hard to find any info online, no reviews...


Good read even if a lot of it goes right over the top of my head :oops:

http://onlinelibrary.wiley.com/doi/10.1 ... 150656/pdf


Retigabine, a KV7 channel opener and novel
anticonvulsant compound
Retigabine (RTG), initially derived from flupirtine, a
substance used for therapy of acute and chronic pain,
enhances the activity of KV7.2–5 channels (Rundfeldt &
Netzer, 2000; Tatulian et al. 2001; Dupuis et al. 2002).
Since none of the clinically used anticonvulsants exhibits a
similar mechanism of action,RTGrepresents a new class of
anticonvulsant compounds the effectiveness of which has
been demonstrated in many seizure models (summarized
in Wuttke & Lerche, 2006). It is currently undergoing
phase III clinical testing for pharmacoresistent focal
epilepsies. Since augmentation of theMcurrent mediated
by RTG-activated KV7.2 and KV7.3 channels will lead to a
stabilization of the resting and subthreshold membrane
potential towards the K+ equilibrium potential, thus
generally reducing membrane excitability, M channels
are an attractive pharmacological target to treat any
disease going along with neuronal hyperexcitability, such
as epilepsy, PNH, neuropathic pain, migraine and stroke.
It is important to note that RTG does not enhance the
activity of the cardiac KV7.1 channel (Fig. 5A) rendering
cardiac side-effects unlikely.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Trobalt/Potiga

Postby raindog on July 27th, 2012, 4:07 pm

Well looks like i could be the first ever PNH guinea pig subject to sampling Retigabine. I got a prescription today but my pharmacy are having to order it for me, i should get it on Monday.

My starting dose is 3x 100ml tabs per day and to up the dose after a fortnight.

Again i'll do my best to give it a good go and keep you all posted here.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Trobalt/Potiga

Postby raindog on August 5th, 2012, 6:09 am

Early days yet and on my 3rd day on this, condition is no different at all. Getting a few balance problems were i wobble / sway a bit.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Trobalt/Potiga

Postby raindog on August 13th, 2012, 5:30 pm

Still no change in condition. No problematic side effects either. I see doctor to increase dose on Friday, but cant say that i'm fussed as i dont think it will make much difference, but i'll give it a go
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Trobalt/Potiga

Postby chicagobfs on August 13th, 2012, 11:24 pm

Thank you for an update:)
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: Trobalt/Potiga

Postby raindog on August 25th, 2012, 2:47 pm

Well had to go to the docs on Friday, having upped to 3x200ml i started getting pretty bad fatigue on top of fatigue i already have. Also i was having urine retention and pitting odema down both lower legs down by the shins. I was also getting very short tempered /mood changes, that were taking me into dark places and bouts of profuse sweating. GP told me to stop taking them straight away. Still feeling very fatigued and flat and out of sorts. In all honesty the meds never altered my condition in any way.

Sorry but it never worked for me.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Trobalt/Potiga

Postby chicagobfs on August 26th, 2012, 11:34 am

Raindog thank you for trying!! And sharing with your experience.
User avatar
chicagobfs
Hero
Hero
 
Posts: 339
Joined: January 28th, 2011, 10:41 pm
Location: USA, IL

Re: Trobalt/Potiga

Postby fargo on August 27th, 2012, 5:44 am

I was also going to try Trobalt but my doctor refused to prescribe it. After Raindog's experience I'm not that willing anymore.. As for many here my reaction to drugs is always exaggerated that's why if I have to use them I always take half of what's prescribed, same with alcohol - very little makes me drunk - I have to be careful :) so I was thinking perhaps one should start with very low dose for a period of time rather than increase it when nothing happens?? I mean those tests results/ on Trobalt/ must be based on something..
well, I don't know , personally I'm staying off of any meds and I'm doing relatively ok..even sleeping improved.. I moved to the mountains area and still trying to follow my diet / no sugar, no white flower, no processed food . no coffee/ - and no balance problems, no weakness, occasional twitch here and there , no muscle pains .. there is only one thing that makes me feel bad - it's weather changes - when the weather's about to change my twitching increases / right calf/ and definitely I feel better in the mountains ..
Funny thing is I bought a motorcycle a couple of months ago - you know what? no more brain fog for me as well ;)
this thing forces you to concentrate , you bet:) seemed hard in the beginning / I was about to give up on it for fear of being slow and undecided but my brain somehow adjusted to the situation.. being happy is very important imo:)
fargo
Senior Member
Senior Member
 
Posts: 50
Joined: January 18th, 2010, 2:33 pm

Re: Trobalt/Potiga

Postby raindog on August 28th, 2012, 3:24 am

I did start off on the lowest dose and increased as i was told to. 600mg a day is what i managed to get to and the recommended daily dose was 1200mg. I would not put off anyone trying it as we are all different, I've had to stop loads of meds because ive not been able to tolerate the added side effects.
User avatar
raindog
Saint
Saint
 
Posts: 1289
Joined: March 17th, 2008, 6:51 pm
Location: Barnsley UK

Re: Trobalt/Potiga

Sponsor

Sponsor
 

Next

Return to Symptom Management

Who is online

Users browsing this forum: No registered users and 3 guests