Retigabine (Trobalt, Potiga) — General Discussion

[Christian78]

I spoke with the Brai2n clinic, they were shocked to find out Trobalt helps and they will try it.

I hope Dr. Jan Ost will take things further and give and test their patients with Trobalt, because TT Retigabine effort was a hard failure.

failure is i ment failure sabotaged by negler and incompetence of trobalt team apparently.

 

[Steve]

failure is i ment failure sabotaged by negler and incompetence of trobalt team apparently.

What you need to understand, which you may not, is that we aren't running a trial here. We are observing what is happening to various people who are self medicating. This is all we actually can do, we aren't insured, registered or recognised in any way to conduct a trial. The reports could have been coming in a little better than they have but other than remind people to submit them we are fairly limited.

What we do have are some results from people taking Trobalt, we have some interesting statistics and reason to believe that it has an effect on patients with tinnitus. What we are doing is communicating with people about this and working out the best way to use the information, using a lot of our free time in the process.

What would you do with these results, what do you think is the way this information should be used?

 

[attheedgeofscience]

incompetence of trobalt team apparently.

What incompetence are you referring to, exactly? Please define in what way Team Trobalt is incompetent according to your observation?

 

[RaZaH]

Yeah , that makes no sense to me , what were you expecting ?

 

[Hudson]

failure is i ment failure sabotaged by negler and incompetence of trobalt team apparently.

I'm sorry if you had a poor experience using the drug, but no one asked you to do this. Everyone has volunteered to do this, and gone to great lengths to discuss using this drug off label with their doctors.

 

[jazz]

It almost seems like the older the T, perhaps a different dosage approach might be needed.... So many variables

GSK believes age may adversely affect one's ability to metabolize the drug. In general, aging bodies have more difficulty metabolizing drugs than younger bodies. RTG is not different. There might also be gender differences in how the drug is metabolized, which is not uncommon.



Here is the full link:

http://www.mhra.gov.uk/home/groups/pl-p/documents/drugsafetymessage/con289461.pdf​

This information is available elsewhere in GSK's paper about RTG's safety. I believe the link is somewhere in this thread. The above link was the best I could find without digging deeper.

Here is a link to a general article about gender differences in drug metabolism:

http://www.aafp.org/afp/2009/1201/p1254.html​

 

[Dr. Nagler]

failure is i ment failure sabotaged by negler and incompetence of trobalt team apparently.

Christian, tinnitus gives you license to be frustrated. Tinnitus gives you license to be upset. Tinnitus gives you license to be miserable.

But tinnitus does not give you license to be a jerk. And right now that is precisely how you are acting.

You refer to the apparent incompetence of Team Trobalt. The fact of the matter is that Team Trobalt is extraordinarily competent. Every member of that team is working very hard on behalf of the entire tinnitus community, and much is being accomplished behind the scenes. They deserve your thanks, not your scorn.

And as far as I am concerned, while I do have my shortcomings (who doesn't!), I have sabotaged nothing. Indeed, I would be thrilled if Retigabine turned out to be everything that everybody hopes for.

My friend, it is quite clear from your postings that your own path to peace will never be found in a bottle of Retigabine. Your path to peace lies within you, and nowhere else. I hope you find the relief you seek.

stephen nagler

 

[Christian78]

Christian, tinnitus gives you license to be frustrated. Tinnitus gives you license to be upset. Tinnitus gives you license to be miserable.

But tinnitus does not give you license to be a jerk. And right now that is precisely how you are acting.

You refer to the apparent incompetence of Team Trobalt. The fact of the matter is that Team Trobalt is extraordinarily competent. Every member of that team is working very hard on behalf of the entire tinnitus community, and much is being accomplished behind the scenes. They deserve your thanks, not your scorn.

And as far as I am concerned, while I do have my shortcomings (who doesn't!), I have sabotaged nothing. Indeed, I would be thrilled if Retigabine turned out to be everything that everybody hopes for.

My friend, it is quite clear from your postings that your own path to peace will never be found in a bottle of Retigabine. Your path to peace lies within you, and nowhere else. I hope you find the relief you seek.

stephen nagler

Then i honestly apologize and ask admin to erase my bad comment. I ask you then to explain what did you do for Trobalt, and I would like our team to say how far did they come? I beg you bot them and You.

 

[attheedgeofscience]

I ask you then to explain what did you do for Trobalt, and I would like our team to say how far did they come?

Well... as an example I have myself spent over 200 hours for Team Trobalt on:

• Correspondence with researchers for the MoA of Trobalt.
• Correspondence with the doctors from the research centre.
• Data analysis of study results.
• Producing action logs and data specs for future data capture (template attached to illustrate the detail that this involves).
• Taking part in the now +500 e-mails/discussions that Team Trobalt has had since the beginning.

Just yesterday, I spent the entire day preparing a 3-page actionlog which highlights all the points which we need to cover with the research centre. They - the research centre - have pretty much given a guarantee that we will be given a chance to publish the results as a series of case studies in a recognized journal of pharmacology. However, all this hinges on the volunteers who supply data to the PROGRESS FORMS.

This afternoon, I will be submitting the 3-page actionlog to the team of researchers for follow-up. Another member of Team Trobalt has established initial contacts with doctors of the US Department of Defense. Another member has been busy liaising with tinnitus organizations/interest groups. Yet another member has been contacting GSK.

All of this shouldn't be news to anyone: I have posted probably around 20 messages in the ATA petition thread (which received several alerts):

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896/

So that's the kind of work that we do (for free). What do you do?

 

[Dr. Nagler]

Then i honestly apologize and ask admin to erase my bad comment. I ask you then to explain what did you do for Trobalt, and I would like our team to say how far did they come? I beg you bot them and You.

As for what I have done ...

I have expressed my doubts about Retigabine's pharmacological efficacy on this board and have answered a number of questions regarding why I feel that way. But in spite of those doubts, I have offered to assist Team Trobalt in their work. In particular I have offered to help with appealing to the American Tinnitus Association (as a former Chairman of its Board of Directors) in arranging for a request for Retigabine grant proposals for research. You accused me of sabotaging the effort, and I have done nothing of the kind. Indeed I have strongly supported the effort in spite of my personal misgivings.

stephen nagler

 

[inadmin]

All, Christian is having a really difficult time (like many of us). Let's not judge him and go along forgetting what was said. This condition sometimes makes you almost wanna kill someone so let's try avoiding Analyzing every sentence said.

 

[1MW]

@Christian78 just a question have you tried ketamine ?

 

[SoulStation]

I think the key is we just need to Respect eachother and not point fingers. I am absolutely blown away at the hard work of the staff, team Trobalt, and all volunteers for this site.
Cheers to learning more.

 

[65vwbus]

Nothing important to add yet, but just wanted to say I now have a prescription and will be starting in the next few days.

 

[65vwbus]

Oh... P.s... How do I post a new user report?

 

[Steve]

Nothing important to add yet, but just wanted to say I now have a prescription and will be starting in the next few days.

Hi, noting that you are in the UK, how did you find getting the prescription, was there much convincing to do with the Doctor?

There's a link at the top of each page for the new user form.

 

[65vwbus]

I still can't see the link! Might be because I'm on an ipad, I'll have a look on my proper computer.
I've been seeing my neurologist for months because I've got chronic pain as well as tinnitus. A few weeks ago I mentioned Retigabine, took a couple of print outs from here and he said he would look into it. Now he's researched it he said he's very interested, it didn't take any convincing at all. He thinks it might help my pain and wants to see if it'll work for his visual snow patients too. This is my third neurologist, and the best by far, he has been the only one to get my pain level down enough to be able to work part time.

 

[Steve]

As an announcement of what we are doing with the results...

We have been communicating with the Tinnitus Research Initiative about the informal Trobalt trial on TT. They are very interested in this and very interested in the concept of this kind of informal, internet based trial.

We have given them the results to date and they are going to submit an article summarising the activity to the journal "Expert Opinion on Pharmacotherapy".

We can't stress enough how important it is for all people doing their own trial to complete the new user and update forms. What's happening here is really making a difference, voices are being heard. The more data we have the better the assessment that can be made.

The more "out there" this gets the better we can engage others to progress to potential off label use and potential further trials on a refined version for tinnitus - if it continues to show efficacy.

 

[Dr. Nagler]

As an announcement of what we are doing with the results...

We have been communicating with the Tinnitus Research Initiative ...

Excellent. These folks are the REAL DEAL. I cannot tell you how impressed I am with Team Trobalt's focus and resolve.

Here is a link to TRI's latest newsletter ...

http://www.tinnitusresearch.org/en/news/pdfs/TRI_Newsletter_2914.pdf

Well done, Team Trobalt!

Dr. Stephen Nagler

 

[Viktor Salvatore]

Great work all of you. Dr. Nagler your very important to us and please don't let these comments get in the way. I agree with the above post that Tinnitus is what Christen was Speaking as he was most likely in pain and frustrated that there is nothing to just help a bit out there. We are all like that. I totally understand him. I am sure he realizes his comment as off as he already expressed regret and to remove the message. Christian, going forward please contribute at the veryleast with support as these guys are putting in a lot of hours for free. All trying to help insome way in the end.

To the rest of you guys and gals, thank you for your sacrifice of personal time and your willingness to carry the torch.

V

 

[tomm]

Thanks to helpful members on the board, there is now another potential option for UK residents seeking retigabine.

For those struggling to get a UK prescription, Mark Weatherall at the London Headache Centre is accepting NHS referrals as a Neurologist. If you go private you may be able to get an appointment within a week. Around 5 weeks for NHS. This is not guaranteed. But he has approved initial prescriptions for retigabine for tinnitus and neuralgia in the recent past.

 

[RaZaH]

This is awesome news !! Woohoo ! We can make a difference , that feels good !

 

[Dr. Nagler]

Great work all of you. Dr. Nagler your very important to us and please don't let these comments get in the way. I agree with the above post that Tinnitus is what Christen was Speaking as he was most likely in pain and frustrated that there is nothing to just help a bit out there. We are all like that. I totally understand him.

I understand him too.

But here's the thing. It's one thing to be totally miserable, frustrated, and frightened. Lots of folks with severe intrusive tinnitus go through that. I know I did. But not in my wildest dreams would I have donned the coward's cloak of anonymity afforded by the Internet and lashed out at those whose sole offense is that they cared about the same things I care about. It takes a real jerk to do that, and if every once in a while folks need a wake-up call in that regard, so be it. Christian has apologized. That's good enough for me. Done and forgotten. Apology accepted. But maybe the next guy or gal in similar straits will take note of it and think twice about acting like such an ash pole.

stephen nagler

 

[SteveToHeal]

Thanks to helpful members on the board, there is now another potential option for UK residents seeking retigabine.

For those struggling to get a UK prescription, Mark Weatherall at the London Headache Centre is accepting NHS referrals as a Neurologist. If you go private you may be able to get an appointment within a week. Around 5 weeks for NHS. This is not guaranteed. But he has approved initial prescriptions for retigabine for tinnitus and neuralgia in the recent past.

Have you go a telephone number? Number at that link does not work.

Not to worry:
020 331 11234
charing cross hospital

Sarah (Dr Mark Weatherall secretary for NHS patients - 5 week or more waiting period).

Juliette George (Dr Mark Weatherall secretary for private patients) - 079 214 09597
0203 3111 071
julietgeorge@nhs.net
295 pounds consult !!!!

Hope it helps anyone else wanting to go this route in the ul. Gonna send an email now to Juliette giving my situation. All i really want to hear is if it is a definite if he can prescribe. Then its raise a 300 pound private consult fee (ludicrous) and hopefully get a prescription!

 

[65vwbus]

Hi @SteveToHeal
I know it's a lot of money, but last year I saw a neurologist who wasn't a patch on Dr Weatherall, and I paid £350 for half an hour. You get an hour for £295, he's very thorough, and a really nice person too, the best doctor I've met.

 

[Juan Carlos]

Woow guys better take a holidays to spain with that money, that will be cheaper and more joyness, im not joking

Wanted to note some facts

When I was on holidays in bcn, my T was very low, came back to work and so and it got worse, is very attached to stress. I thought it came to baseline, but yesterday I took 200mg and it had the same effect that 300mg did on the beginning, so i guess i have still lasting improvements. Anyways I dont think that i will get cured in 1 or 2 months left, is not enought time considering my evolution

-Is said that most people with 6-9 months are considered chronic and probably wont get cured naturally. So seeing that from the other point of view, anyone with T, wich gets induced silence for that period of time, will be permanently cured. yeah mpt needed less time as his case was recent i think less than 6 months

-Im not going to take again 400mg on empty etomach, its too killer and always makes crazy dreams from wich i want to wake up and when i do it im so super drugged, i had the same dream 2 times wich i wrote on a paper. 300mg is enought effective without crazy experience. So im going to take 200mg 8pm, 200mg 11pm, 200mg 4am 200 mg 12am
other day after 400mg i had a repeating voice in my head wich came from my dream but still listening after wake up for some minutes, thats like overdose, no need for that

-Trobalt is eliminated on the kidneys, i have the feeling that when i drink some juice (specially pineapple) or tea it goes away so fast from my blood, anyone else experiencing this? its like take pills to the toilet. In general, in my case i feel it goes quite fast, like in 4h is totally gone

-I was thinking, when on holidays i've been on very quiet room for sleeping, in my home there are some little noises at night, could that make a big difference? any thoughts?

-now one off-topic, i saw like 3 people on the forum may get into the Autifony trial, cross fingers..

 

[1MW]

Does anyone found a way to pee normally under trobalt ?
A non loop diuretic like chlothiazide maybe help ?
What supplements help trobalt side effects (retina pigmentation / difficult to pee) ?
Also for those who have seen improvement the first week was worsening or the improvement
was from 1st pill ? Any other with permanent results like @Mpt ?

 

[undecided]

Do not use a diuretic. That will just create more pressure in the kidneys and afterwards the bladder.
Try to gently massage the lower abdominal muscles for some time (just above your pee-pee )
That always did the trick for me.

 

[1MW]

i will make a second try with retigabine with bigger doses because i can't tolerate anymore the side effects of corticosteroids.I hope also that will help for benzo withdrawal.

 

[Viking]

A non loop diuretic like chlothiazide maybe help ?

As @undecided sayd: avoid diuretic drugs. Drunk more water!

i will make a second try with retigabine with bigger doses because i can't tolerate anymore the side effects of corticosteroids.I hope also that will help for benzo withdrawal.

As you just know, antiseizure help people when tapering off fromm benzos. You are an expert! then...start always with a low dose...and when increase...tap down slowly the benzos... The chemistry of the brain is compromised by benzos. I think is not useful to start with an high dosage. In many cases, for example, with tegretol in mvc is necessary only 200mg and not 1200mg.
Start slow and i think you will see the first result (difference between improvement or worsening) in 1 week. Unfortunately we who use benzodiazepines, we give an unknown actual results of these drugs such as Trobalt!
A big hug my friend