Retigabine (Trobalt, Potiga) — General Discussion

[RaZaH]

I am concerned about something that has not come up yet in this dicusssion.
If there is a drug (like Trobalt) that affects your ears , might it affect your hearing ?
That is hard to answer and in fact I think a lot of drugs do but get unnoticed by the normal person not obsessed about their top end hearing like I am.

 

[Hengist]

Thank you I am utterly terrified now thanks to that wiki photo. Maybe it's a reality check I need.

They will probably subside and unless it is serious and you cannot get the urine out there is not a significant danger of kidney water. I mean the sideeffects reported on this drug are very small compared to what most commonly used drugs can do like sudden heart failure or internal bleedings.

 

[Johno]

If there is a drug (like Trobalt) that affects your ears , might it affect your hearing ?
That is hard to answer and in fact I think a lot of drugs do but get unnoticed by the normal person not obsessed about their top end hearing like I am.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3683764/

- there is this sentence: Retigabine does not affect temporal processing or hearing, because it did not affect PPI or hearing thresholds

 

[SoulStation]

the problem is im in acute stages and if i try to wait for another drug to come out ill prob be in my chronic stages and i just dont wanna live with this for 6 month to 1 year its only been 3 month and i just cant take this anymore

You said yours is unilateral coorect? Just left ear? I would look into trigger point therapy . Maybe see an Neurologist and get an MRI. But then again I'm trying retigabine. Apparently Flexeril was more successful in unilateral tinnitus if you look up the trial.

 

[dan]

the problem is im in acute stages and if i try to wait for another drug to come out ill prob be in my chronic stages and i just dont wanna live with this for 6 month to 1 year its only been 3 month and i just cant take this anymore

So don't wait! Try it.

 

[Hudson]

the problem is im in acute stages and if i try to wait for another drug to come out ill prob be in my chronic stages and i just dont wanna live with this for 6 month to 1 year its only been 3 month and i just cant take this anymore

@Eric Fridley Depending on your timeline, you may still be eligible for the AM-101 trials that are taking place.

http://www.tinnitus-study.info/us-en-study-centers

It looks like there is a study center relatively close to you in Henderson, NV. I know it's a bit of a drive, but I would try out AM-101. If your tinnitus is unchanged by participation in AM-101, or it becomes chronic, you could then investigate the retigabine. That's my opinion though. I have had T for over 10 years and I'm in no way eligible for the AM-101 trial, but I would do it in a heart beat if they would let me. As a result, I'm looking into retigabine myself.

 

[Eric Fridley]

@Eric Fridley Depending on your timeline, you may still be eligible for the AM-101 trials that are taking place.

http://www.tinnitus-study.info/us-en-study-centers

It looks like there is a study center relatively close to you in Henderson, NV. I know it's a bit of a drive, but I would try out AM-101. If your tinnitus is unchanged by participation in AM-101, or it becomes chronic, you could then investigate the retigabine. That's my opinion though. I have had T for over 10 years and I'm in no way eligible for the AM-101 trial, but I would do it in a heart beat if they would let me. As a result, I'm looking into retigabine myself.

i already emailed them and since my tinnitus is uknown they wont accept me in the trials

 

[Hudson]

i already emailed them and since my tinnitus is uknown they wont accept me in the trials

Ahh, well, that's unfortunate. In my experience, at least here in the US, many primary care (or even psychiatrists) for that matter are hesitant to prescribe retigabine. As a result, they often will refer you on to a Neurologist. My insurance requires a referral from a doc to the neurologist before I can even get in to see them, so I'm waiting on my psychiatrist to refer me on to a neurologist in my area. You might want to try there then. Good luck! Going in well informed (and with documentation, all of which has been provided in this thread) will make them much more likely to at least give you that referral, and probably will make the neurologist give your request serious consideration.

 

[Grace]

i already emailed them and since my tinnitus is uknown they wont accept me in the trials

Thats what i thought would happen. And your honestly never gonna know... I would of just said drug induced cause thats the closest thing you could think of cause you said you were on oxycontin for 3 days and who knows that could have caused it, if it wasnt your jaw.

 

[Christian_B]

I'm in almost same position as @Eric Fridley. I still don't know how i got my T, i'm going through a longer test at my ENT the 18th this month. I also mainly (90%) of the time got it in my left ear, and probably 100% of the time, but sometimes it feels like it's in my right as well.. Could be my brain making stuff up.

I got these clicks in my ears when i move my jaw, but that wasn't there at first when i woke up 4am, 2 months ago (when i got my T.) they came like 2 weeks after my T.

My own guess is that i have some TMJ issue, cause from time to time i also got some pain in my jaw. But i really don't know.. It would be nice if my ENT could tell me the reason, and if not atleast send me to some jaw specialist.

If it's not TMJ related, i might ask the ENT for Trobalt, but for some weird reason i just think he won't prescribe it to me.. I don't know how well known Trobalt is in Denmark, even tho i know it can be bought.

.. On the other hand, it could be noise induced T. - i've always been a bit of a party guy D) and went to several festivals and concerts at the front of the pit... but can noise induced T. come a week or 2 after exposure to high sound? I remember the week before my T. stepped in, that i was relaxed playing games and chilling at home..

 

[jazz]

but can noise induced T. come a week or 2 after exposure to high sound?

I don't see why not. Personally, I'd do the AM-101 trials; you can always try Retigabine. The AM-101 shots do lower recently induced tinnitus; but it's questionable if the shots will cure it. Maybe the window for a cure is much smaller than three months. (Of course, you are only at two months!) That said, the less work the Retigabine has to do, the better your results should be. And there are no serious side effects with AM-101's treatment. You can't say that about Retigabine.

Of course, I'm very excited about Retigabine and the drugs that will follow. But I can't imagine these drugs being first line treatment for recently induced tinnitus.

 

[Christian_B]

I don't see why not. Personally, I'd do the AM-101 trials; you can always try Retigabine. The AM-101 shots do lower recently induced tinnitus; but it's questionable if the shots will cure it. Maybe the window for a cure is much smaller than three months. (Of course, you are only at two months!) That said, the less work the Retigabine has to do, the better your results should be. And there are no serious side effects with AM-101's treatment. You can't say that about Retigabine.

Of course, I'm very excited about Retigabine and the drugs that will follow. But I can't imagine these drugs being first line treatment for recently induced tinnitus.

Well, I live in Denmark. To my knowledge there are no trials going on in this country. And taking the trip to the UK or something like it sounds a bit crazy to me.. yes i hate my T. but still

 

[cdog]

Doesn't appear to be selective enough. To be more effective and less side-effect prone than retigabine, the drug would have to target Kv7.4 exclusively (and maybe Kv7.1, though how it'd do that without affecting the heart is an open question). Opening Kv channels in general, or even just Kv7 channels would have effects we don't want. Now if there's an enzyme that acts only on Kv7.4, that's a path worth exploring.

Perhaps it is possible to activate that enzyme only in the neurons responsible for hearing (like the spiral ganglion neurons). One way is to make the enzyme dependent on something (co-enzyme, etc.) that is specifically expressed by inner ear/spiral ganglion neurons. Here is where nanotechnology would really help...

 

[Philip83]

http://www.lakemedelsverket.se/Alla...ekommenderar-begransad-anvandning-av-Trobalt/

If anyone's interested the one thing to translate from this is that NO cases of pigmented retinas have been observed earlier than after 2 years of use.

 

[Lake Girl]

I have been following this discussion with great interest. I seen my neuro 3 weeks ago. He did not feel comfortable starting me on Trobalt "yet." He started me on tegretol 200mg x 2 daily instead which I agreed to try for 2 months but I don't have a lot of hope. Providing I get the script I intend to try Trobalt even if I have to pay out of pocket for it. I have had T for about 18 months. Not sure why I got it. For sure not noise induced. BTW I am female and live in the USA. Will keep you updated.

 

[rtwombly]

I have been following this discussion with great interest. I seen my neuro 3 weeks ago. He did not feel comfortable starting me on Trobalt "yet." He started me on tegretol 200mg x 2 daily instead which I agreed to try for 2 months but I don't have a lot of hope. Providing I get the script I intend to try Trobalt even if I have to pay out of pocket for it. I have had T for about 18 months. Not sure why I got it. For sure not noise induced. BTW I am female and live in the USA. Will keep you updated.

Your experience is similar to mine. Doctors want to try out all avenues before trying retigabine. I'm going to an MD who also conversant in traditional Chinese medicine in the hope that he will appreciate how diverse my efforts have been (I've had extensive chiropractic care and acupuncture). Thankfully I'm having pretty quiet days lately or the waiting would wear on my nerves.

 

[SoulStation]

So Update on me; talked with my psychologist and she said that the urinary hesitation issues I am having may be caused by the effect of the Lexapro in combination with the Potiga. I'm back on to 300 mg as of yesterday. The effects are not fantastic, but it is definitely better then it was. I know @Johno said he went for a run and didn't have a spike and I definitely have noticed my T doesn't spike as bad. My concerns are with my upcoming work schedule about to blow up with teaching commitments, what will be harder, teaching with even more severe T or having a concern about side effects of Potiga? The urinary side effects seem to be a bit better today. Not as hard to go get a good stream going on. I think the stress from starting to teach again 5 days a week (private 1 on 1 music lessons) is getting to me a bit. One day at a time. Sorry if this thread is all over the place.

 

[sticky]

So Update on me; talked with my psychologist and she said that the urinary hesitation issues I am having may be caused by the effect of the Lexapro in combination with the Potiga. I'm back on to 300 mg as of yesterday. The effects are not fantastic, but it is definitely better then it was. I know @Johno said he went for a run and didn't have a spike and I definitely have noticed my T doesn't spike as bad. My concerns are with my upcoming work schedule about to blow up with teaching commitments, what will be harder, teaching with even more severe T or having a concern about side effects of Potiga? The urinary side effects seem to be a bit better today. Not as hard to go get a good stream going on. I think the stress from starting to teach again 5 days a week (private 1 on 1 music lessons) is getting to me a bit. One day at a time. Sorry if this thread is all over the place.

SS, are those effects in relation to urinary retention or your T?

Thanks

sticky

 

[SoulStation]

SS, are those effects in relation to urinary retention or your T?

Thanks

sticky

I am not sure what you mean.

 

[SoulStation]

I have been following this discussion with great interest. I seen my neuro 3 weeks ago. He did not feel comfortable starting me on Trobalt "yet." He started me on tegretol 200mg x 2 daily instead which I agreed to try for 2 months but I don't have a lot of hope. Providing I get the script I intend to try Trobalt even if I have to pay out of pocket for it. I have had T for about 18 months. Not sure why I got it. For sure not noise induced. BTW I am female and live in the USA. Will keep you updated.

Don't want to be a drag but you should read this. print it for your Neuro
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3829249/

 

[jeannie]

great Christian 78!! please keep us updated!!!

 

[Christian_B]

so your all saying im am pretty much stuck with this for years until a cure or something is made to decrese the T pretty depressing cause by then i prob wont be here at least i hope i am in a better place then this shit hole

We all here more or less suffer the same condition friend. By constantly being negative and not have a uplifiting positive attitude your T. for sure won't get better! I know it's hard, we all do, but it is manageable to live with it! and this maybe sound rather strange, but this time is not the worst time to get T. - there's so much research into the area and many here on the board thinks that a cure or atleast a HUGE relief will come very "soon".

@benryu - which is big contributor to the site, is very serious about his thoughts of a cure in the near future!

And trust me, i am in the same boat as you.. i can from time to time get down because of this evil condition, and makes it even harder because my family seriously don't think it's that bad to have T. (sad thing is most people who doesn't have it, thinks it easy to live with). I have hard to sleep EVERY night, but i still go out of my bed, try to be positive and i KNOW that i will even cope or habituate more in the future or there will be a cure/relief!

Hang in there!

 

[Christian78]

uh well, i can remmeber, can you find post, i started with 100, 3 day, then3 -200mg, then 3 mg 3deay, and then i went 200 like 6 days something. and then i was close on my fist box and ended it. then when i got safe supply i started again 100 and then 200, so

 

[Martin69]

uh well, i can remmeber, can you find post, i started with 100, 3 day, then3 -200mg, then 3 mg 3deay, and then i went 200 like 6 days something. and then i was close on my fist box and ended it. then when i got safe supply i started again 100 and then 200, so

Hi Christian,
So you are on 3x200 mg now?
How do you feel? What does your T make?
We are all curious.
I would try myself, but cannot get it in my country.

 

[Christian78]

i had only one box and i trued several day and then , and i went up and went down, no entremly good effect just no spikes, then i stooped, the somewhere mid August i went 5 days 100, an then 200 all the time now.

 

[Christian78]

Hi Christian,
So you are on 3x200 mg now?
How do you feel? What does your T make?
We are all curious.
I would try myself, but cannot get it in my country.

Yesterday it did not took it become i was not home and t was ok today! (half life 8 of medicine so it was only so 16 when i took it, so in blood concentration was 400 mg, then 7 h later 23h, 200 mg, 4h midnight 100 mg, 7h and at 11h i had 50 mg left in blood and t was hardly noticeable.

i had only one box and i trued several day and then , and i went up and went down, no entremly good effect just no spikes, then i stooped, the somewhere mid August i went 5 days 100, an then 200 all the time now.

 

[Martin69]

Yesterday it did not took it become i was not home and t was ok today! (half life 8 of medicine so it was only so 16 when i took it, so in blood concentration was 400 mg, then 7 h later 23h, 200 mg, 4h midnight 100 mg, 7h and at 11h i had 50 mg left in blood and t was hardly noticeable.

i had only one box and i trued several day and then , and i went up and went down, no entremly good effect just no spikes, then i stooped, the somewhere mid August i went 5 days 100, an then 200 all the time now.

Thanks for replying.
So with 3x200mg hardly noticeable?
Is that correct? That would be great.

 

[Christian78]

well there are bad hours, but mostly it OK, try 250 300. message me if you want on private.

 

[bedouin]

Well, I live in Denmark. To my knowledge there are no trials going on in this country. And taking the trip to the UK or something like it sounds a bit crazy to me.. yes i hate my T. but still

I you get on the trial, even if in the UK, it would be worth it, as u have T < 3 months! Good luck!

 

[rtwombly]

So Update on me; talked with my psychologist and she said that the urinary hesitation issues I am having may be caused by the effect of the Lexapro in combination with the Potiga. I'm back on to 300 mg as of yesterday.

You started last week, right? Do you mean you're on 300mg total (100mg x 3/day)?