@Zimichael I just checked your Excel of dosage. I realize you were in 600 only 2 days, 600 is the minium dose meant to be effetive, in some persons is more. So why are you so surprised that didn't get any change on T yet?
It's true that other persons had changes in lower dosages but very mild changes. Maybe that mild changes happened to you but you can't realize because that would be masked by your louder T.
Christian said:
"For me first actual change in t came after few days on 600."
Juan Carlos... and anyone else bothering to read this 'typically me', long post. There is some potentially useful "review material" in here that might help some of you 'remember where we have come from', so could be worth wading through for that. Otherwise it is indeed addressed to JC primarily.
JC...With all due respect, as I truly know you mean well, but your comments are not quite as simple as you imply in regard to my situation & my Trobalt trial. Perhaps you have read all the historical details, but there is so much confusing stuff on this thread now, that even though I have been 'in it from the beginning' I can't keep it together and admit to being rather lost at to what the hell is going on exactly. So apologies if I "correct" you from wobbly ground.
Let me make this clear...There is only an
assumption that higher doses will be effective for tinnitus based on extensive review of "the literature". This includes the GSK submission data; the too numerous to mention research studies many of us have pored over for months; then our own multifarious conjecture and understanding of the drug from much back and forth ref. mechanisms of action, etc., etc. Indeed, this conjecture of ours on this, and the Autifony thread, I do not take lightly. I believe that some of us here have a pretty darn sophisticated insight into this drug and it's potential workings...
for tinnitus. Not at all bad for non PhD neurologists! I mean that.
OK, those who have followed my point of view know that well before Locoyeti's great find on "dosage is king" study, and Autifony came out with their astounding (to us then) "one time high dose - no taper" for AUT00063, I was a proponent of: "Forget temporal aspects and taper, that is for epilepsy. We need to treat this as a
tinnitus drug not as an epilepsy drug. Thus it is all about "lots of boots on the ground" at
one time so they can "kick the Kv doors down", not hang around outside the membrane playing cards with some guys leaning on the KV doors slowly increasing the pressure over weeks....Which is what the official: "Do not increase overall Trobalt dose by more that 150 mg TOTAL per week!" is all about -
for epilepsy. Going by the official book meant taking 5 whole weeks just to get to 900 mg/day total! Hell, my whole trial was only 4 weeks, with taper up, target dose, and taper down! Matt got to 900 mg/day in
one week!
OK, so what's my point with this recap?
~ Well, one is to just refresh memories a bit in case some of the history has become fuzzy.
~ Two is that target doses for us,
for tinnitus, are purely speculation as are based of an efficacy model for epilepsy. Yes, it is highly likely there is correlation,
but that is one of the things our trial is all about...to find out!
~ Three if, yes
if, one goes by a plasma concentration (which a number of drugs do) of mg/kg body weight, then
my 600 mg/day dose for 2 days was indeed almost equivalent to Matt's effective dose of 900 mg/day. Just saying.
~ There is zero evidence
to me, yet, that hanging around at dose "X" for a longer period of time makes any difference to tinnitus just because the drug is building up over weeks or whatever (like is the case with many anti-depressants and so forth...You know the: "Don't expect to notice anything for 4 to 6 weeks"...yadda, yadda, yadda).
Again, I think, and it has been vindicated IMHO, that once this Trobalt is floating around in your brain at a "trigger dose saturation level"
for a particular person, it kicks the doors open enough to have
some sort of tinnitus effect that is noticeable to the person taking it.
~ Ironically, if you look at all our tiralees, just about every one has had some sort of "effect" at lower than the first supposed "action level" of 900 mg/day total. Mmmmmmmmmmmmmmm....Why is that?! Yes, 900 or 1200 mg/day total may be killer good,
but I am just going off the observed results reported by us. That is what one is supposed to do with a trial, to me anyhow. In fact, if memory serves, just Hengist and myself may be the only people that truly "bombed", but he unfortunately did not get past the first pill. I at least got to my target dose per body weight. Lep gets blown out by trying to go up to 500 mg, etc., etc. Hardly anyone. Oh....
has anyone gone over 900 mg/day???.....Yet indeed, we have had numerous "effects" at much lower doses that 900 mg!
~ So, I would disagree, that for tinnitus, 900 mg is a gold standard requirement to even begin to get even a hint of action. Clearly it is possible at even as low as 300 mg/day total. This is just a reported fact here, by 'us'. NO other conclusions need to be made at this point. We observe, and note.
You say:
So why are you so surprised that didn't get any change on T yet?
"Xesus"... If you get what I have said above, I am not surprised I did not get any results at 600 mg/day, but given my treatise, it would have been nice, to get a hint of a change. That's all. Just a wee, tiny hint. Period. Something to validate the direction and freak out of it all. A minor "twiggle" in my T would have been like a staggering ray of hope after all I have been though for decades and decades. Others did get such a twiggle in their T, or a "significant" decline. BUT NOTE...NONE HAVE HAD T FOR 58 YEARS AND FOUR INCREASES OVER THAT TIME! = So far everyone has been what I consider "short term T", though NGC891 says 1998 > 2008 > 2014 in his very brief profile (hint, hint!), so maybe finally we can evaluate another "long termer". This multi-years of T time period could be a major "factor" in Trobalt action levels of course. Only one way to find out.
And perhaps you forget, or do not know, the frightening reality of highly Reactive Tinnitus/Hyperacusis.....My 50% increase from the > Trobalt dosing was nothing to treat lightly!!! The "bruised feeling" at very low decibel levels is and was very, very scary! That exact feeling has preceded my last two permanent increases in T & H in 2006, and 2012...which, simply speaking, ruined my life....You think I do not worry about MORE of that??? You think I did not wonder what would happen if I went up to "official dose" of 900 mg, or even 1200 mg??? Maybe the H would seat permanently at that 'ultra-sensitivity' even if I never exposed myself to a single sound during my seclusion. As it was I was completely isolated for 6 days at "whisper quiet levels" (maybe less than 50 dB for anything, as had to back up 10 meters to use occasional speaker-phone calls at lowest volume setting, etc.).
You may also forget, that we did not have at that point (certainly for me!) conclusive evidence that the side-effects of Trobalt would dissipate fully after use. It was presumed so, but none of us had done it yet after a decent trial period to be sure. I think I was the first to accurately document that.
Finally on this point, there was the very real problem of "no supply". My Trobalt dried up! It was lucky I had enough to even change gears so quickly and climb to two days at 600 mg, and reach my preliminary target dose. And please remember my "if the drug is there in the inter-membrane fluid at a high enough dose it should kick the Kv doors open"...As hypothesized by yours truly. Obviously for me 600 mg was not enough.
And I give zero credence really to... "Well maybe it would have worked if I had stayed at 600 mg for a week or two". Sorry. Nope. Don't go for that. I would have needed to go up in dose...and plain did not have the pills due to punk out of Canada source. The intention was there (despite H fear) if you look back, but it was just not possible.
Oh...and this: Maybe that mild changes happened to you but you can't realize because that would be masked by your louder T. Ha, ha...NO WAY! I would notice a fly's fart of difference in my T. We have a long, intimate, history.
Lastly...I do not understand your Excel tables. Are they for me??? I have my own Excel tables of what I was going to do if I had the Trobalt in hand. However, I always go by "reality" of what happens as I go along, not a schedule per se. After all, look what happened to my initial verbalized plans. I pretty soon dumped my 'slow taper up' and zoomed up in dose after I realized things were not as bad as expected re potential side effects. (Urinary retention, fatigue, etc.).
And NAC...I cannot take hardly any supplements (long story you don't need. My doc remembers NAC as I believe it was what made me throw up on his floor! No thanks.
Well, there you have my regular "Encyclopedia Britannica" response...but why should I change my style now. At 64 one can be an 'old codger' and do what one likes right. However, I hope it has been helpful to review. Also I hope you do not take this AT ALL as any kind of defense, or emotional reaction, or attack, or ???, against you JC. I read what you say and you are great. No problem mate.
I spent the time here as I have a vested interest in getting our information on Trobalt as accurate as possible, and this has been a chance to do that and clear up any "looseness". I appreciate solid, well explained info, and hopefully you do too.
*(More response due to other posts to come - but later.) Take care, Zimichael
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