Yikes, this thread is going in directions none of us envisioned!
To @dr-nagler and anybody else interested:
The reason I consider Retigabine to be a viable potential treatment is a combination of research into voltage-gated potassium channels and their potential effects, comparison to Autifony's drug and its apparent history, and the careful reading of user experiences.
First, voltage-gated potassium channels exist to govern the timing of neuronal activity. Gates open, action potentials are inhibited. As a target for fighting neuronal hyperactivity, they make sense. Read the papers locoyeti linked, Google Dr. Large (Autifony CEO) and his analysis of Retigabine, etc. That side of the science is pretty straightforward. The idea that tinnitus is essentially neuronal hyperactivity in the DCN and/or other portions of the brain's auditory system seems almost self-evident. We're hearing sounds that don't exist outside our heads, therefore something in our heads is causing the sound. The hardest thing to prove, IMO, is whether or not a drug therapy is targeting the right part of the brain.
For that we go to the user experiences. Here the plain fact is, we've only had two patients - Mpt and Christian78 - who has actually gone up to a 900mg/day dose. Everybody else has either stopped due to side effects, not had time to reach full dose, had to stop because their supply ran out, or have not reported in awhile. Several people reported positive results at low doses, but not everyone, and to my mind, the positive results could easily be explained away in the low-dose people as placebo effects. locoyeti's recent posting indicated that efficacy was somewhere north of a heapin' handful of pills, so neutral-to-negative results at less than 900mg are broadly meaningless (personal experience may of course vary).
So, Mpt was cured, and Christian78 experienced a major improvement after going up to a moderate effective dose. Nobody has experienced any side effects that persisted for longer than a few days after stopping the drug (Lep's eyes cleared up, Zimichael's hyperacusis went back down to its usual level; correct me if I'm wrong,
@Viking, but you're fairly certain Retigabine did not cause with your kidney problems, it was just a bad idea to continue Retigabine with those problems, right?).
I feel like we are still very, very early in the testing phase of this drug, and I sympathize greatly with Autifony and any other company trying to bring a drug to market. If you can't actually get your drug in people's hands, and can't actually get them to take it due to whatever reasons, how can you get a good test?
I think what frustrates us as patients the most is that those of us who have done this research and are convinced that we would like to give Retigabine have no recourse but to summarize our research to a doctor and hope that he or she will be willing to invest the time and effort we have already expended to find out the facts. This doesn't seem to be how doctors work, however. We go in, make our elevator pitch, wait fifteen minutes, and get a "no". All the doctor can say is that there hasn't been a trial for tinnitus. They can't tell us why they, personally, feel it's necessary that there be such a trial before they are prepared to allow us to take a risk we're begging to take.
I feel that there are two basic kinds of doctors: those who quote from a book of rules, and research scientists. I don't say this to denigrate doctors. The neurologist's office I visited to ask for Retigabine was overrun with suffering people at a 10-to-1 ratio to docs and PAs. The PA I spoke with asked both doctors about Retigabine and did some brief Googling. The end result was, nobody felt comfortable giving me Retigabine. I understand why. With 38 patients in the waiting room, they can't take all day to sit down with me, go through all my paperwork, read Mpt's firsthand experience, maybe exchange emails with Autifony's CMO, as I have. They have no choice but to go to the book of rules, quote me what it offers, and send me on my way.
I am considering going to another neurologist who I think may be more of a risk taker. It just frustrates me that there's not some means available to me to prove to - somebody - that I don't really need a doctor's prescription for this drug. I've done the research. I've had a physical. I know the risks. I have a plan. What do I need a doctor for?
What I'm getting at is, to most people on these forums, the word "doctor" is synonymous with "well-meaning roadblock". I'm personally unimposing, and I often get the feeling I'm being coddled by my doctors. I hate that. I genuinely believe they're mostly well-meaning people, but if they don't know how to help me, I wish they'd follow my lead. Taking Retigabine for six months is almost certainly not going to kill me. It's probably not going to blind me or wreck my liver. If it makes me feel lousy, that's my own fault, not the prescribing doctor.
The American and UK systems of medicine seem mostly to be set up to protect people from making
bad decisions. But shouldn't their mandate be to protect from making
uninformed decisions? If I'm informed, shouldn't I have a right to decide?
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