*This post is a more detailed adjunct to (addition to) the regular "Retigabine – User Experiences" progress form posted on that thread yesterday.
First, a definition c/o Google: placebo ~ noun
- A harmless pill, medicine, or procedure prescribed more for the psychological benefit to the patient than for any physiological effect.
- A substance that has no therapeutic effect, used as a control in testing new drugs.
- A measure designed merely to calm or please someone.
Nothing I am reporting, or would report (like say - 'decreased tinnitus'), is a 'placebo effect'. It has been conclusively proven that I do not "placebo" c/o many examples in 1993-1998 and 2004-2008. No reason for that to have changed.
OK, now for a more detailed report on my Potiga/Trobalt use, to date:
1. Since Friday night [09/26/14] I have been on a daily Trobalt dose of 150 mg TID (3 x day) Dosage times are…5:00 am, 1:00 pm, 9:00 pm = Total of 450 mg/day.
Yes, I am going up a lot faster than I thought. Reason being – side effects apart from > T & H have been 'acceptable'. With the 2 week shipping delay, the math requires I need to know fast if I am going to get anywhere with this med. I have to reserve enough pills to taper off properly.
2. With regard to the increased "hyperacusis" I am experiencing. Here are some examples:
a). Phone-calls...I always use speaker-phone as have not been able to put a hand-held phone to my ear since increased T in 2012. I get "inner ear bruised feeling" after a short time. *(This sensation is a pre-cursor to more damage, believe me!). OK, my son called early last Tuesday [09/23/14], so yes...still at the start of 100 mg x 3 period. I kept having to step back from the phone, ending at the far wall of my room to talk, plus lower the volume setting on phone base to the minimum. I did not have to do this before Trobalt, and would often bump up volume to hear better.
b). Movies...Normally on my system I have volume for movies set between 45-55, and sometimes a bit more if not a "big bang" action movie. Friday evening [09/26/14], yes…before increased to 150 mg, I watched a 'normal' DVD for first time in a approx 10 days. I had volume down to 20 and used subtitles as it was too soft to hear dialogue properly. After the two hour movie, even at this low level, I realized my T volume was much louder and had a sense of "mild bruising" in ears (Shit!!!). T volume slowly went down to 'normal (the now "9.1") baseline' overnight. This is a somewhat "numerically objective" measure of the H...All this is real. No placebo. No doubt about it.
The increased H seems to be more temporal (time exposure) related than very brief loudish volume spike related. Like banging a dish in the sink seems the same as before. No new issues there. However, good old Stapedius Reflex may be accounting for this of course.
I am avoiding 'sound' big time, and protecting with full plugs when do a hit-and-run grocery trip to town…Been there, done that! 2006 and 2012, meds + sound = disaster!
3. Weight…Trobalt is not increasing my weight. I am struggling to stay at 140 pounds and have lost three to five pounds, as am down to 137 right now.
4. That sense of "emotional fragility" comes and goes. At present I feel fine. It appears to be random, though potentially linked to the Trobalt as the stuff does have classical "suicide" (thus depression) warning on the insert sheet. I do think I am getting more exhausted with all this though as am not as gung-ho about doing research as I was a week ago.
5. Interesting that the increased dose has not hit me that bad (yet) with fatigue, or later with better sleep? No idea why not, as have had some wiped out periods earlier over past two weeks.
6. The mistakes typing and forgetfulness seem to get less after a few days at a higher dose, so at this point I think it is mainly a temporary phenomenon. Sure hope so! Still not as good at keyboard today as usual.
OK, I think that's about it on 'effects' for now.
At this point I have two options. If I decide this is not going to do much for me, I have sufficient pills on hand to carry on for a while then taper off. If I continue and increase dose, it looks like I am not going to be able to avoid ordering another batch of pills Monday, unless I do a pretty fast taper and a very short interval at the dose I was heading for = 600 mg a day. Currently I am getting less optimistic about a positive effect on me as in the past I consistently reacted to meds, (and particularly "Pharma" meds v. more "natural/alternative" meds) much quicker, and at lower doses, than I or my practitioners would expect.
I'll end with another quote. This was from Matt on the very first page of this enormous thread. No doubt you will see the relevance:
I have had a massive improvement a few days after getting on retigabine, but I wanted to give it awhile before reporting anything to reduce the chance that I'm reporting on a placebo effect. I've been taking it exactly two weeks as of today, and I can pretty confidently say that the improvement that I've seen is not a placebo effect or habituation…*[Edit] If anyone is wondering I am taking 300 mg three times a day.
Best to all… Zimichael
Anyway, I am curious how his T is now, because he has some problems with spikes.
so maybe you missed it. 
Member
