Retigabine (Trobalt, Potiga) — General Discussion

[SoulStation]

@SoulStation
Thank you!
What form does it come from?
I'm not familiar with subject at all so apologies if it's doubling

Capsule form I take the vitamin shop brand ... 600-1200 mg

 

[valeri]

@SoulStation
Any improvement?

 

[Cor]

With the longterm side effects of this med, id be most interested if the effects revert once you taper off. But I realise that may be a big chance to take if you've finally gotten rid of your tinnitus.

 

[Jayro]

has anyone reported effects lasting after stopping medication?
and
has anyone considered / tried / researched modifying K+channels with natural substances such as Apple Cider Vinegar, Bicarbonate Soda etc... weblink : ncbi.nlm.nih.gov/pubmed/24647960

 

[lapidus]

I can't remember but I am hoping someone that is having success with retagabine, has tinnitus from acoustic trama or loud noise.

Can someone enlighten me?

From my understanding Mpt's T could've been noise induced by a ear wax removal. But he himself isnt 100% sure of this.

 

[Hengist]

has anyone reported effects lasting after stopping medication?
and
has anyone considered / tried / researched modifying K+channels with natural substances such as Apple Cider Vinegar, Bicarbonate Soda etc... weblink : ncbi.nlm.nih.gov/pubmed/24647960

Vinegar increases your sodium levels and decreases your potassium and that is the opposite effect of what is good for tinnitus.

 

[Johno]

I can't remember but I am hoping someone that is having success with retagabine, has tinnitus from acoustic trama or loud noise.

My T is acoustic trauma induced. For 1000% sure.

 

[Jayro]

Vinegar increases your sodium levels and decreases your potassium and that is the opposite effect of what is good for tinnitus.

hmm... where do you get that from. I understand ACV instead regulates sodium levels and not only contains potassium but also helps mineral / nutrient absorption. ACV is an old home remedy for tinnitus and I was speculating it maybe because of the increase in potassium levels.

 

[Hengist]

hmm... where do you get that from. I understand ACV instead regulates sodium levels and not only contains potassium but also helps mineral / nutrient absorption. ACV is an old home remedy for tinnitus and I was speculating it maybe because of the increase in potassium levels.

Wikipedia and benryu

 

[111]

Hm... i will try some tea or what for bladder. Why is this part of body afected?

Maybe this is the reason, Johno ? Maybe drink loads of water to keep things working regular, if you get my drift.

The main concern from safety pharmacology studies is the ability of retigabine to interact with non target KCNQ channels. Retigabine produced relaxation of vascular, urinary bladder, and gall bladder smooth muscle cells, and reduced aortic baroreceptor responses to raised arterial pressure. It therefore has the potential to induce hypotension and to inhibit the emptying of the urinary and gall bladders.

 

[rtwombly]

has anyone reported effects lasting after stopping medication?
and
has anyone considered / tried / researched modifying K+channels with natural substances such as Apple Cider Vinegar, Bicarbonate Soda etc... weblink : ncbi.nlm.nih.gov/pubmed/24647960

Bicarbonate does not cross the blood-brain barrier.

Personally I went through a phase when I was taking an "alkalizing formula" of sodium bicarbonate and potassium bicarbonate and ACV. Didn't help with my tinnitus, though the doses were fairly small (1/4 teaspon bicarbonate mix, 1tbsp ACV 2 or 3 times a day).

Maybe this is the reason, Johno ? Maybe drink loads of water to keep things working regular, if you get my drift.

If the bladder muscles aren't working properly, drinking more water is the exact opposite of what you want to do, IMO. If you can't let it out, it stays in.

 

[SoulStation]

@SoulStation
Any improvement?

From the Potiga? Yes I feel that I have an improvement in the hissing and tonal aspects of my T . It is still there, but softer for sure and I have to listen harder to hear the high pitched central head T .

 

[Zimichael]

All those who have taken Retigabine, this is for you:

We now have a New Participant Form, and a Progress Form.

All Retigabine users should first go and complete the New Participant Form.

Then every once in a while (when any noticeable further changes occur) they should hopefully complete the Progress Form.


The forms can also be accessed here: https://www.tinnitustalk.com/forms/

Hey great form Markku!!!

A couple of questions if i may:

1. Where do these forms "go"??? Do we see them on the thread? Do we have access to them to see the details if not? Certainly the info is of pertinent interest for sure...to me anyhow.

2. Not sure about this below... as in, if this is a "registration of starting" form, how can the second question below be different from the first??? They should be the same thing right, as theoretically no Retigabine effect yet, as that is what comes on the Progress Form later. Can you clarify???
The Severity of Your Tinnitus Before Starting Retigabine?:Required
On a scale of 1 to 10.

The Severity of Your Tinnitus Now?:Required
After starting Retigabine. On a scale of 1 t

Thanks much... Zimichael

 

[Markku]

@Zimichael,

the answers go into a database. We'll periodically do an update on the current results. Regular members can't see the answers "live" -- it requires our report.

The New Participant Form is meant to be the first form to be filled out when you have been on Retigabine for a while already. It's not a "Pre-Retigabine" form but rather, say, something that you should fill out when the drug has been in your system for a while already. And after that one should continue reporting their current situation via the Progress Form.

 

[Zimichael]

Hey Zimichael, at last mate someone references this document, it is very informative for sure.



I think the issue with the release over here in Aus could be the way the PBS ( pharm benefit scheme ) has been changed. This scheme is where a drug is placed on the pbs scheme, which means the cost of getting it is subsidised by the govt here, meaning it is cheaper to purchase than if it wasnt on the scheme. This med was approved for release in Oct last year, so i am guessing they have now applied to put this on the pbs before general release

The pbs application system was changed recently, so it is now unfortunately taking longer for the drugs to get approved to be on this scheme. When you think about it, if a new drug appears and they put it straight out to market and the cost is say 3 times that of existing drugs, then people will not use it, but once registered it lowers the price significantly, so then people would use it and the useage would increase as Dr's would prescibe it more. The below explains what the pbs does


What is the PBS?
The PBS Schedule lists all of the medicines available to be dispensed to patients at a Government-subsidised price. The Schedule is part of the wider Pharmaceutical Benefits Scheme managed by the Department of Health and administered by Department of Human Services.
This schedule is

• All of the drugs listed on the PBS
• Information on the conditions of use for the prescribing of PBS medicines
• Detailed consumer information for medicines that have been prescribed by your doctor or dentist;
• What you can expect to pay for medicines.

The PBS has been in existence since 1948 and is governed by the National Health Act 1953 (Commonwealth).


Juts in relation to getting access to this over here in Aus, i have some new info which i am working on, so still trying to access to it before its general release.

Hey @111 ...thanks much for the response there. And yeah, I was figuring the "delay" in Australia may be due to the whole cost-efficacy-do we want to pay for this v. other similar meds-red tape aspects [Like waht seem to be happening in Europe]. But was not sure.
However, the 'dates' are still a bit intriguing given that the eyes and pigmentation stuff was coming out big time months before, yet there is the equivalent of no mention of it except as a skimpy bikini after-thought.

Thanks again... Zimichael

 

[Zimichael]

@Zimichael,

the answers go into a database. We'll periodically do an update on the current results. Regular members can't see the answers "live" -- it requires our report.

The New Participant Form is meant to be the first form to be filled out when you have been on Retigabine for a while already. It's not a "Pre-Retigabine" form but rather, say, something that you should fill out when the drug has been in your system for a while already. And after that one should continue reporting their current situation via the Progress Form.

Ah so...Thanks for the clarification, as otherwise I would have sure filled it in on start day.
Best, Z

 

[Markku]

Ah so...Thanks for the clarification, as otherwise I would have sure filled it in on start day.
Best, Z

There's only one response so far in the New Participant Form so some changes could still be made...

I'm thinking whether it should really be made a "Pre-Retigabine" form. Would that make most sense?

Then have people fill the Progress Form whenever they've started on the drug.

What are people's thoughts?

 

[Zimichael]

Just a note for the "die-hards"...

In looking at my elephant of post yesterday : Potiga/Retigabine review notes - August 31st 2013, I realized it was not as easy to read as I wanted to to be, so just went in and used the wonders of colour to change that! So now, it is much clearer where I am quoting, and where I am generally yakking about my own questions or conclusions, etc.
If it was too cumbersome to look at and your action potential went to zero...or the 'next' button, you might find it more user friendly now.

Oh, and I did email Autifony about when they are actually going to release info about Phase II, and what countries may be involved. I await with not too much bated breath.

Best... Zimichael

 

[Markku]

I made changes to the forms.

Now the New Participant Form is basically a questionnaire about how one's tinnitus was before Retigabine.

Then one should fill out the Progress Report Form while taking the drug -- whenever (even on multiple occasions) they feel it's appropriate to give an update on progress.

Hope this makes more sense now...?

 

[Hengist]

Just a note for the "die-hards"...

In looking at my elephant of post yesterday : Potiga/Retigabine review notes - August 31st 2013, I realized it was not as easy to read as I wanted to to be, so just went in and used the wonders of colour to change that! So now, it is much clearer where I am quoting, and where I am generally yakking about my own questions or conclusions, etc.
If it was too cumbersome to look at and your action potential went to zero...or the 'next' button, you might find it more user friendly now.

Oh, and I did email Autifony about when they are actually going to release info about Phase II, and what countries may be involved. I await with not too much bated breath.

Best... Zimichael

I actually e-mailed them like a month ago, still no reply.

 

[jazz]

I made changes to the forms.

Now the New Participant Form is basically a questionnaire about how one's tinnitus was before Retigabine.

Then one should fill out the Progress Report Form while taking the drug -- whenever (even on multiple occasions) they feel it's appropriate to give an update on progress.

Hope this makes more sense now...?

@Markku Thanks for providing us such an important resource!

I like the new format. It's important to have a baseline reading--if possible--to better evaluate the drug's effectiveness on tinnitus.

Of course, we still want everyone who's on the drug to participate--regardless of when you began Retigabine. Your responses are indispensable: not only to yourselves (to provide an accurate record), but also to everyone who wants to try this drug.

Having these measurements benefits everyone--and, of course--you're also contributing to the tinnitus knowledge base. Now, that's awesome!

So c'mon people, let's get the ball rolling and begin filling in those response forms.

Thanks in advance!

Peace and quietude for all!

 

[dan]

How do we know that a legitimate person is filling out the form, if its anonymous ?
People would feel more comfortable reading real time feedback from posters they trust.
So I don't see how this form can be an effective tool.
I think just keeping an update in the beginning of this thread with a mini summary of each poster's progress would suffice.

 

[Markku]

How do we know that a legitimate person is filling out the form, if its anonymous ?
People would feel more comfortable reading real time feedback from posters they trust.
So I don't see how this form can be an effective tool.
I think just keeping an update in the beginning of this thread with a mini summary of each poster's progress would suffice.

It isn't anonymous.

Member's username is automatically recorded in the background.

Also, one doesn't take away the other. Everyone can still write about their experiences in this thread as well. But it is not very time consuming to also fill out the form, which helps us immensely when we later go through the data and prepare it for publishing here.

 

[dan]

Ah ok, if the community can see who has actually filled out the forms, then it is very good.

 

[SoulStation]

So I decided today after careful deliberation that I am going to taper back on my Potiga usage. I have been experiencing some urinary hesitation and feel as though this may have been because I jumped right into 100 mg 3x/day and didn't ramp up and also because of the fact I have been tapering off flexeril (muscle relaxant) and was on 20 - 15 mg of it the first 3 days of potiga. I think the two meds together may have been too much for my system to handle and can't ignore this. I am going to go backwards and try a low dose of 50 mg 3x/day to see if I can still retain some of the benefits on my T. There is no doubt that this medication affected both my tonal and hissing sounds and the overall reactivity of it. But I don't wan't to be stuck having to use a catheter. That is an awful thought. Any thoughts from the community?

 

[rtwombly]

Any thoughts from the community?

I think it's very sensible of you. Do we really expect bladder problems would continue after cessation of use? I don't think I've seen that noted anywhere.

Was the flexeril for your tinnitus as well? I've had stiffness in my neck pretty much since it set in for me, though I'm not sure it's a new symptom. My chiropractor said they look for three things as a source of muscle tension, the three "t"s: Trauma, Toxins, and Thoughts. My theory is that tinnitus is acting like a toxin for me, that I'm tensing up in response to it subconsciously. Maybe that's thoughts, I dunno.

 

[jazz]

I am going to go backwards and try a low dose of 50 mg 3x/day to see if I can still retain some of the benefits on my T.

That sounds like a good idea. In a few days, you can always increase your dose. And, if you still have problems, then go without the drug for a week to make sure the Flexeril has washed out of your system. If you do temporarily get off the drug, make sure to increase slowly when you resume to minimize side effects.

The big news is that the Potiga helped you, and you were only on it three days. So that's very promising. You should probably note this somewhere on our forms since it's possible that others would also find this information useful in the future. Reporting potential drug interactions is the only way most interactions are discovered.

Keep us posted!

 

[Hengist]

So I decided today after careful deliberation that I am going to taper back on my Potiga usage. I have been experiencing some urinary hesitation and feel as though this may have been because I jumped right into 100 mg 3x/day and didn't ramp up and also because of the fact I have been tapering off flexeril (muscle relaxant) and was on 20 - 15 mg of it the first 3 days of potiga. I think the two meds together may have been too much for my system to handle and can't ignore this. I am going to go backwards and try a low dose of 50 mg 3x/day to see if I can still retain some of the benefits on my T. There is no doubt that this medication affected both my tonal and hissing sounds and the overall reactivity of it. But I don't wan't to be stuck having to use a catheter. That is an awful thought. Any thoughts from the community?

That does not sound like a serious side-effect, sometimes I have urinary retention when I am experiancing stress about something, I mean maybe it is only you working yourself up about this being too much that you can handle. Once my friend took some drugs that I told him have insomnia as a side-effect and increased heart rate than immediately he said he experianced it. Afterwards I tested if this was true by telling him that I lied about the sideeffects just to annoy him and than his insomnia and heartrate problems went away -.-' Like immediately next day he had no problems and none after that.

 

[sticky]

Without getting too excited, the relevant experiences of the wonderful people taking retagabine are PHENOMENAL!

Please keep us all updated.

sticky

 

[SteveToHeal]

I think it's very sensible of you. Do we really expect bladder problems would continue after cessation of use? I don't think I've seen that noted anywhere.

Was the flexeril for your tinnitus as well? I've had stiffness in my neck pretty much since it set in for me, though I'm not sure it's a new symptom. My chiropractor said they look for three things as a source of muscle tension, the three "t"s: Trauma, Toxins, and Thoughts. My theory is that tinnitus is acting like a toxin for me, that I'm tensing up in response to it subconsciously. Maybe that's thoughts, I dunno.

I have the 3 T's as well. Since getting the T, my neck creaks and clicks on demand. It's response to the trauma I am sure. Thoughts don't help either but we all know "stop thinking about T" is easier said than done. Good post tho man. Thanks. Now I know i'm not the only one with a neck that clicks like a shotgun arming its trigger.