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Anyone tried Trobalt (retigabin)?

PostPosted: August 21st, 2014, 1:40 am
by TwitchyDoc
Following all ALS research news (Hardvard), the latest findings are exciting. To make it short - diseased neurons are hyperexcitable, firing more often and hence become more vulnerable to damage and death, which eventually occurs as the folded proteins build up in the cell and thus increase the hyperexcitability order to normalize that, potassium channels need to open - and this is exactly what retigabin (Trobalt) does. It is now suggested as a pontential treatment for ALS as this is already a drug approved by FDA.

Anyone thinking about this? It is very likely the same mechanism is in place in our cases, hopefully not with the same outcome but imho it is worth the try (for those with severe symptoms).

I just got my prescription and will keep you informed - clearly the hyperactivity of our neurons is not healthy for them (e.g. metabolic demands, waste products...) so why not to give it a try?


Re: Anyone tried Trobalt (retigabin)?

PostPosted: August 21st, 2014, 3:15 am
by leroyb
Lucky you :/ I had the same thought and I asked my GP who refused point blank (this was back in May and I also thought well if this is something else it will reduce neuronal damage).

Re: Anyone tried Trobalt (retigabin)?

PostPosted: August 21st, 2014, 3:30 am
by TwitchyDoc
GP sux, man..go to a neurologists and insists that you want this because of its proven neuroprotective effect.

Re: Anyone tried Trobalt (retigabin)?

PostPosted: August 21st, 2014, 8:04 pm
by Little Lost

Well worded summary of axonal hyperexcitability due to impaired potassium channels. This impairment can be due to one of hundreds of mutations, or through lack of chaperone proteins, or via the generation of auto antibodies against voltage gated potassium channel I.e. the VGKC antibodies that bfsburger talked about on this forum in the past......however all roads lead to Rome and the end result is an intrinsic membrane hyperexcitability of the motor neuron, possibly enhancing oxidative stress.

The proposed use of ion channel modulators such as trobalt as neuroprotective agents is exciting and very logical.

I went in June with Professor Eggan's paper to my neuro just for his thoughts on some of the issues it raises. I would never have got the drug as it is only licenced in the UK for the treatment of epilepsy.

So you are going to try it ????????

Two things I would consider which you may have already thought of.

1: The anti-epilepsy medication was added directly to motor neurons in cell culture and it did indeed reduce hyperexcitability and improved their survival in medium. However I am not sure if the concentrations they used on the cultured cells would be similar to what physiologically you can achieve by taking the drug orally. Many drugs have great results when poured directly on target cells, but pretty useless when taken in vivo.

Additionally motor neurons in dish do not recreate a complex complete nervous system. They are only just moving into patient trials.

2: This drugTrobalt is a Kv7 channel activator. Previous research has indicated that it is actually Kv2.1 that is the key regulator of intrinsic neuron excitability. Therefore In vivo activation of Kv7 might not be enough if you personally had a mutation in another regulator such as Kv2.1.

Despite my reservations I understand fully why you have chosen to try this approach. I really hope it does open the potassium channel and reduce hyperexcitability and lessen your fasciculations.

I have intended to write to the authors at a later date as I have questions to ask. Just need to get my wording right ....they are Harvard......but they are also human.


Re: Anyone tried Trobalt (retigabin)?

PostPosted: August 21st, 2014, 8:30 pm
by leaflea
This is very exciting indeed! With all the twitching etc. going on, it certainly does not feel benign and it makes sense it is a similar, but not exactly same process going on. Twitchydoc, please keep us posted. When I went to my one and only neuro visit in January, he said there was an epilepsy or anti-seizure drug I could try. Could it have been this one? If not, I wonder which one he was talking about. I wasn't interested at the time.

As long as I have two of the smartest people on the board in this thread, may I ask your opinion on something...I am taking a potassium sparing medication and am wondering about the effect on bfs. It is a mild diuretic, anti-hypertensive. I do not have HTN, but am taking it for an off-label reason. Acne. My acne really flared just before getting this bfs...and I was originally prescribed Minocycline. Took it for two weeks and then noticed the twitching. I don't know if there is any relationship between the Minocycline and bfs, but I wrote about this not long ago and you responded Little Lost. Minocycline apparently usually has a neuroprotective effect, but not necessarily so in active ALS. Kind of a scary correlation to me in my situation. Now, I can say my skin is visibly improved! However, not the bfs and just wonder how this postassium sparing medication might affect it in light of these potassium channels which you two seem to understand a whole lot better than I.

Thanks so much!

Re: Anyone tried Trobalt (retigabin)?

PostPosted: August 21st, 2014, 9:13 pm
by leaflea
Twitchydoc...please read my above post and also bring us up to 2011 you took Tegretol with some positive effect. What happened? Did you then try Triliptal? Raindog used Trobalt in 2012 with bad side effects and no improvement. Mary msm used Lamictal and it seemed a miracle drug for her. Thanks for your response!

Re: Anyone tried Trobalt (retigabin)?

PostPosted: January 29th, 2015, 5:00 pm
by Little Lost

Been a few months now so any update on your trial with this.