Well, I hate to say this, but I am pretty sure that my Trobalt trial has not produced and will not produce any results of note with my tinnitus. I say "pretty sure", because I am not quite done yet, and the Gods could decide that 'going down' in dose could be just the ticket. But I doubt it.
As of this morning's 5:00 am dose, I have dropped from 600 mg/day total (200/200/200 mg), to 450 mg/day total (150/150/150 mg). I am starting a fast taper as am running out of pills and do not want to take a dive from 600 t0 zero in just a few days. My sense is, that could be 'dangerous'. I will however be finished if all goes as planned one week from now...then Retigabine plasma free (c. 98% if go by the book) in 10 days after that.
All of you have been on this Retig ride since the beginning will know that I had high hopes yet realistic expectations. I also said I don't placebo. For sure if I did,
this would be the time, as this is the first real hope of a probable positive "T effect" I have seen in decades, while we wait for 00063. Sigh!
From what I can tell I am the only trialee that has had zero change in T volume, tone, pitch, whatever at these doses.
@Hengist had a blow-out after the first pill (Where are you? Are you OK?),
@Viking had 'other issues' that stopped him, everyone else had effects quite soon. Even Christian was getting results after day five...
I am now 3 weeks in and ramped up in dose a lot faster than I thought I would. My body weight mg/kg dose level target was 600 mg per day. We know that it rapidly crosses the BBB...
Since RTG/EZG is highly permeable and not subject to P-glycoproteinactive transport across the blood–brain barrier, free plasma concentrations provide an accurate indication of the free brain concentrations achieved.
...thus my "kick the doors down with a high enough dose" was given at least a small chance of working. Unfortunately the doors stayed shut.
Yes, there is evidence that the length of time with tinnitus will make it harder to change. So perhaps my results here prove that...or maybe not. Perhaps hitting the Kv7 channels is not the right doorway
for me. We are all different.
The reason I could not give this trial more time (as those following will know) and why I increased dose so quickly, was that the supplier was "out of stock" for my repeat order. Thus I had not option. Either drop it or give it a go at 600 mg/day...which I did.
Now it is time for some other 'longer term T' folks to step up I hope. We need more info. We need a wider trial base.
On an ending note for now, I will say that side effects were surprisingly mild versus what I was expecting. I have had far worse experiences (though mainly with 'gut/nutritional' type meds). Yes I had one day (day 7 at 200 mg/day total) where my tinnitus went
up markedly, but came to baseline the next day. Yes I have
increased hyperacusis as of around the same time. I am hoping this goes down as I taper off the drug.
Well, enough for one post. I will do a formal update on the "Users thread" as well. I will also add more posts about some tips, thoughts, other mild side-effects, and some concerns, over the next days. I will also do a full report with my total dosing schedule after I complete this month long 'trial' next week.
Hell, I had to give it a try and put my money where my mouth was. I applaud those doing this Retigabine and hope others do so too. As the Brits used to say..."Carry on."
Best, Zimichael
( ) Just please let me take some benzo. I wake , uh one more day, why i did not die, i wanna kill my sell, one more horrible day of this hell of life, i take clothing on myself, i need to survive to 12:00 oh, I MUST EAT
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I suppose it is becouse one needs time to get used on then, and body needs it too. I notices just after a pill one cant really do hard gym, bit it can cross walking machine.
