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So, I was just on here answering a PM and thought it might be time to post this nugget. I've been taking generic Zicam - Zincum Acetium and Zincum Gluconium - twice a day for months now and I really do think it's helped me. I stumbled on this when I got a sniffle some time back and got on the...

Thanks for keeping us informed.

The numbness could be an indication of thoracic outlet syndrome. Definitely see a chiropractor. They vary greatly in competence, so you might want to ask around. I recommend a speciality called SOTO chiropractic. If there is a qualified practitioner within 50 miles, it's worth the trip.

That's pretty suggestive that there is something that is working for you, just maybe it needs a longer exposure to make definitive change to your tinnitus. The first thing we Retigabine testers noticed was a "cleaning up" of tones. My high pitched sounds went down considerably more than my low...

That is crazy talk if they haven't had any more concrete results than our members experienced. I mean, 300,000GBP? Isn't that like, eleventy-umpty dollars American?

Thank you, Fernando. I'll watch with interest. May I ask, is that supplement regimen something suggested to you or of your own devising? Also, what is Cink? I recognize the others and have taken most myself.

It's off topic here, but just to clear up, I was talking about my experience with Potiga (I think Stina got that, just wanted to make it plain for everybody). Juan Carlos came up with a theory I agree with, which is that Retigabine's tendency to blank out bits of your memory temporarily extends...

No need to state again that experience with this drug is very individualized, but I agree you'll likely feel something at 300mg TID. However, I'd recommend trying 200mg TID for a full week before moving up, if you have the patience. The drug certainly builds up in your system over time, and...

Just did some quick research, and can say definitely that MEM and Tensor Tympani Syndrome are different conditions. MEM involves the stapedius muscle, while TTS involves, unsurprisingly, the tensor tympani. These are two different muscles with different connections in the middle ear and...

This is a good point. Since I started backing down on Retigabine I've noticed that I've had noticeable effect on lower doses than when I was moving up. Like, once I got the drug really pumping, I didn't need as much. If it wasn't for the eye floaters, which are a new side effect for me, I'd...

I got one from ATEOS, same convo you were on IIRC. ATEOS's source was excellent. The other was https://www.tinnitustalk.com/threads/scifluor-receives-us-patent-for-kcnq2-3-activator-to-treat-epilepsy-and-neurological-disorders.7743/.

I was just walking around my house thinking how quiet it still is on 150mg of Potiga every 6 hours. Two new versions of Retigabine have been invented in the last several months, both of which are said to be less prone to side effects, and one of which is said by the inventor to be theoretically...

Progress Report Progress Report Date: Feb 12, 2015 Current Retigabine Dosage: 150mg every 6 hours Current Side Effects: Brief manic episodes, eye floaters Current Tinnitus Severity: 2 out of 10 Changes in Tinnitus: Interestingly, after my oh-no-it's-creeping-up-again Tuesday, I've had...

I was steady, Juan Carlos is steady. Danny Boy had a big dip in his efficacy before getting on the right dose. These are very complicated, personalized experiences, but we've pretty well established that you are going to notice a difference - how much, for how long, with what side effects -...

@Nils In my experience, the big "how not to" is, don't go up too fast once you start experiencing side effects, or you reach 300mg TID. It's possible to get your brain used to higher doses, but the higher you go the more time it takes. At 100mg, 150, no problem - you can do 2 or 3 days then...

This would go along with the low-laser therapy, the idea that the ears can heal themselves given proper rest and extra energy. Have you been using the cotton all day, or only when you expect to be in noisy environments?

Progress Report Progress Report Date: Feb 10, 2015 Current Retigabine Dosage: 150mg every 6 hours Current Side Effects: None Current Tinnitus Severity: 3 out of 10 Changes in Tinnitus: Today particularly I've noticed a slight increase in loudness, but it is not dramatic. The...

That was my experience at the first neuro I asked. They never gave RTG if there was any other way. But from their comments, it was as much about low performance as danger. Yes, this is a dangerous drug, yes it is known to make trouble for people long term, but from my personal experience, it...

Progress Report Progress Report Date: Feb 1, 2015 Current Retigabine Dosage: 300mg every 10 hours Current Side Effects: Hmm. Well at the moment I'm feeling fine, but the point of this update is to say that at some point recently I've reached a saturation point and can no longer stay on...

Speaking as a Retigabine user, now on 300mg/TID for about two months: it takes some time to ramp up. I mean, I felt like something was happening way back when, but there's been such an amplifying of effects in the last two weeks that a earlier time felt like nothing. Some of this is not...

1MW, I had that briefly as a side effect. It went away with time and "familiarity" with the drug, as nearly all symptoms I developed at 300mg TID have done. Folks, I'm still playing hokey from these threads compared to my previous post-rate, but I stopped by to say that after my bad experience...

I feel guilty for how little I've involved myself in these discussions since starting Potiga, but you can take that as an indication of efficacy. As difficult as it is to pin down exactly what the drug is doing, it's pushed the importance I ascribe my tinnitus from #1 with a bullet to several...

Excellent work spotting that, @OptimusPrimed. I had read many moons ago that SciFluor was interested in Retigabine, but had no idea if they would be able to follow up. So for the record there are now two safer versions of RTG/EZG that should be entering the testing phases soon. Neat that they...

I don't recall reading this, Rich, can you point it out? To anybody who has not had experience with this: taking a pill everyday is no big deal. I took Propecia for a decade to hold on to my hair (which, after 10 months off Propecia, has not gone anywhere...go figure) and the biggest hassle...

Before tinnitus, I thought my wife and daughter had really good hearing and I was normal. My hearing went down a bit with the event that gave me tinnitus, but not that much, and it turns out I would qualify with flying colors. Hearing, like silence, is relative, so you never know without...

Quick post to say to @Christian78, @tomm, and anybody else having bad experiences - HUG - hang in there my friends. You have at least seen that your tinnitus is not an immovable rock. It can be shifted around. It doesn't just decide when it wants to move, we can move it. Sometimes it doesn't...

Progress Report Progress Report Date: Jan 7, 2015 Current Retigabine Dosage: 300mg TID Current Side Effects: Juan Carlos is not alone. I have had manic episodes for weeks that I generally quite enjoy. I'm happy and peppy and more creative, though it's dappened by the mild short term...

Now THAT is very interesting and helpful. Retigabine is definitely still helping me at 900mg (and the side effects are present - typing this is like trying to balance on a skateboard for the first time), but it has eased up in efficacy a bit from previously. Can you please ask that poster the...

@Christian78 My friend, I am always impressed to see you have suffered so much but your attitude always returns to positive. Even when you are at your worst you don't give up. I haven't been posting much because after some setbacks I have had a good experience with Potiga. I don't have full...

Sounds like an event I had one morning at 300mg TID (900mg total), but mine went away within and didn't repeat. Have you tried cuddling with your wife? That helped me. Maybe it only works with my wife. Seriously, tomKA, I hope it settles down for you. The change in tone sounds very much...

http://www.gizmag.com/zero-sr-2014-electric-motorcycle-review-test-ride/32015/ For a mere $17,000, you could be on the road with no worries! ;p Anyway, I think what you should focus in on, @Zimichael, is "dose dependant". I don't know if they mean you have to reach a certain threshold to have...

Just doing a quote because I haven't been able to do a @ with your name for some reason, doctor. I've now had personal experience with Potiga 300mg TID and I can tell you without a doubt that the efficacy against tinnitus is not a placebo effect. I consider myself more suited to make this...

Progress Report Progress Report Date: Dec 20, 2014 Current Retigabine Dosage: 300mg TID Current Side Effects: If other patients are experiencing the same thing I am when they report positive feelings coupled with forgetfullness and slightly altered judgement, I think I have a good word for...

I have not had time to read any posts on this thread or any other today but I must post this before I forget. It is for anyone who has wondered if Retigabine really works or if Mpt and other people's results are real, placebo, or natural improvement. Today is the first day of 900mg Potiga...

@Christian78 Just saw your latest User Experience. If it helps to know this, I have had similar experience with going up and down. I think most of us have. In your case you started out very bad, so it is a bigger swing for you. In my case, like I said in my last report, I had silent times...

Progress Report Progress Report Date: Dec 12, 2014 Current Retigabine Dosage: 200mg TID Current Side Effects: None Current Tinnitus Severity: 1 out of 10 Changes in Tinnitus: It seems silly to come back with a new report just a few days since the last one, but I wanted to document when...

Progress Report Progress Report Date: Dec 10, 2014 Current Retigabine Dosage: 200mg TID Current Side Effects: None Current Tinnitus Severity: 2 out of 10 Changes in Tinnitus: So far, I've not had any changes in tinnitus or side effects since my first dose. The first dose drove it down...

AUT00063 and the derivative of Retigabine that ATEOS posted about previously. Less toxic, more effective, according to the researcher/developer. We should hear more about it in a month or two. Hopefully in another 12-18 months we'll be looking back on this thread saying, "Those poor folks who...

@Christian78 It sounds like you have reached the limit of what Retigabine can do for you at this time and you should consider tapering down. Hopefully you will find that the increase in your tinnitus that you are experiencing is like what Zimichael experienced with his hyperacusis. It went up...

Agree, that's the main reason, but hey are also hoping 063 helps with processing-based hearing loss issues. Two birds, one stone. Any updates from our UK friends?

The whole approach of using Kv channel modulators to effect inhibition is, I think, partially to avoid having to do so through modifying neurotransmitter levels. My chiropractor, who is putting me in touch with a naturopath, was concerned that Potiga would lower my already low levels, but I...

@RaZaH What was your dosage before taking a break? I mentioned in my User Experience update that I had a day when I got back to "normal" on 300mg/day. Efficacy can definitely be affected by outside influences, some of which we don't know. And Retigabine makes it more likely the targeted Kv...

Progress Report Progress Report Date: Dec 7, 2014 Current Retigabine Dosage: 150mg TID Current Side Effects: None Current Tinnitus Severity: 2 out of 10 Changes in Tinnitus: I generally only have 1 tone instead of two competing tones, one low, one high, as before. Sometimes it's the...

Specifically I was talking about what ATEOS posted. Maybe AM-102 will turn out to be a similar approach. It's clear the medical researchers think they're on to something with potassium channels.

The field of ion channel modulators is opening up rapidly. There's at least one other drug with a similar mechanism of action that should be entering the clinical testing cycle soon. Since you've relatively new to tinnitus, @hoper, the best thing to do is be patient. You'll likely notice some...

Personally I went to my audiogram, added up the threshold numbers and divided to get an average, which for me is 25db. Not sure if that's exactly their method, but it seemed a common-sense approach.

On retinal pigmentation, I found out a little about how it operates in the eye. Not anything you can't find elsewhere on the internet most likely, but a good layman's explanation from a knowledgeable doctor. The rods and cones of the eyes are filled with pigments that constantly "get blasted"...

@locoyeti, can you give an assessment or your rationale for the 300x4 approach over 400x3? I've seen half-life estimates range from 5 to 7 hours, and bearing in mind that's only HALF-life, it seems like 400x3 is a much higher dosage at peak. I'm not not freaked out about my kidneys, but I'm...

I feel a bit guilty, having a mild case of tinnitus anyway (close to habituation) and not getting side effects, rather I've had the good feelings that Juan Carlos has mentioned, though perhaps that's just a dawning optimism. There's a long way to go before I'll know what the final outcome will...

Those of you who keep up with the UE thread will see that I've started my dosage. The prescribing neurologist suggested starting with 100mg TID, so I jumped right in. I'm currently on day three, though on day one I only had a single dose, at 11pm. After my first dose I sat in a quiet room for...

Progress Report Progress Report Date: Dec 3, 2014 Current Retigabine Dosage: 100mg x 3 Current Side Effects: None Current Tinnitus Severity: 2 out of 10 Changes in Tinnitus: It's early enough that I hesitate to be optimistic, but after about an hour from my first dose Monday night I...

New User Information Gender: Male Age: 38 How Long Have You Suffered From Tinnitus? (Date of Onset): Jan 15, 2014 How Did You Get Tinnitus?: Other (define below) Explain How You Got Tinnitus: I don't really know, but I had several illnesses in late Dec '13 and early Jan '14, and my...

Members have communicated with Dr Tzounopoulos. Unfortunately any work he is currently doing must be at a very early stage, as he didn't say he was doing anything on it at the present time. Autifony is much further along. I think they will get some good results and additional funding. The...

@NGC891 thanks for your encouragement. Certainly if you are getting some results after this many years, I have good reason to be hopeful. Well, my friends, in a turn of events I can only attribute to God, my pharmacist informed me that I am covered for Potiga. This first bottle is a bit...

@locoyeti, thanks for the advice. My next appointment is Dec 16 so I'll see how long it takes to get my supply. @cdog I've looked and may look again. The one thing that troubles me is that there are two very different price lists on the Canadian pharmacies, and I'm not sure if that relates to...

All, I now have a prescription for 100mg TID (300mg total) of Potiga. It's just a one month, no refills, and I'm scheduled to see the doctor again in three weeks. Not sure if he just wants to check efficacy, side effects, or do some tests. @locoyeti, @cdog, anybody else with experience, any...

That's the main topic of the thread now, beemovie. Trying to find people who qualify and get them in. I believe Freddie qualifies, but has not been able to get anyone on the phone, amandine qualifies but needs lodging in the UK since she now lives in France. Hearing loss requirements cut a...

@undecided I'm sorry you haven't had lasting results. Thank you for sharing your story. I think that what it suggests is that if a person has tinnitus due to an ongoing issue, they can get temporary relief, but permanent change is less likely. From what I've read there seems to be a physical...

We should start a club!

@MattMSP it's a different drug and you get on a full dose immediately, unlike Retigabine which you have to get on gradually. A month may be all you need. Two weeks might even be enough. It will likely vary from person to person because the permanent cure happens due to your own brain's...