here is my thoughts on dosage:
@Zimichael and I indeed are in agreement. I am not sure where we differ, perhaps I advocate greater speed, but I am really just using
@Mpt as a benchmark.
Mpt did 1oomg TID for 3 days, 200mg TID for 3 days, and then maintenance at 300mg TID.
My taper up was:
100mg TID 3 days
150mg TID 2 days
200mg TID 2 days
300mg TID maintenance
I went up at that rate because at the very least I wanted to follow the one person for whom this worked. I made my jump from 200mg TID after only two days because I really was frustrated that I was not feeling much of anything. Also I was not sure exactly how to split a 300mg pill into 250mg. I suppose this wont be a problem for those of you getting smaller pills.
My thoughts on why someone should taper up fast was illustrated well by Zimichael - you want the drug to kick down the doors, not slowly lean on the door. The reason I think this is important is because of something called 'intrinsic' plasticity. Here is one link:
http://www.scholarpedia.org/article/Homeostatic_Regulation_of_Neuronal_Excitability
Basically your neurons are now firing at a 'new normal', which is the tinnitus state. Any change you try to make may be undone by homeostatic mechanisms to get back to the new normal, so slamming down the doors might be a good way to prevent that or at least reduce its effects.
@cdog might be able to explain it better.
I think the dosage schedule for epilepsy can be completely ignored. Epilepsy for the most part is a genetic disease, and so this drug is not really being considered to cure it. In fact it is an add-on drug, which means most epilepsy patients are taking it with other epilepsy medication. This drug if used for tinnitus has the chance to cure us, so we don't have to take it permanently.
Secondly, epilepsy is something that can hit any time, so if you are epileptic, it is important to have it in your system most of the day, hence the 3 times a day spaced by 8 hours schedule. This is the part where I think we can do a bit of creativity, since we don't have epilepsy. I have missed my dosage in the morning by a few hours, and from what I understand the drug completely leaves your system after about 10 hours. This might be why it is hitting me the hardest in the morning, although there is probably other factors that affect that (I have wake-and-baked many times in my life - that means smoking marijuana first thing in the morning - and for those in the know that creates an intense high... perhaps something like that is at play here.
TAPER UP:
I have no problems with someone playing it safe and going on a slow taper up. I didn't feel anything until 600mg/day so I feel like I was just wasting the pills at a lower dosage level. The drug is dose dependent, and so if you don't have enough in your system, its not gonna do anything ('playing cards outside the door', like Zmike said). I think you should just go up rapidly to a point where you feel something, and then slowly push the envelope, and I think there are no rules for that. I think the informal goal should be to get to 900mg/day, and if 600mg/day is doing wonders for you then stay there. I suspect that many people will not find true silence until they get to 900mg/day and beyond.
MAINTENANCE:
Here is an example of how I take the drug. So I take my last dosage of the night at around midnight, and wake up at 8am to take the next one (my other dosage is at 4pm - 8 hour intervals). There have been days where I wake up late, which means that the drug is out of my system (I believe that the drug only stays in your system for 8-10 hours). This might be the reason that it hits me the hardest in the morning. On the days when I have this schedule perturbed, I improvise. So if I take my dose at noon, then I will take the second at 6pm, and the third at 2am (6 hour intervals). I don't know if this is a bad idea or not, I hope that we can get a pharmacist to weigh in this.
I suspect that some people will have to deviate from this if they have jobs. If it hits you hard in the morning, you might have to change your schedule to sleep right after work and then wake up much earlier to take your dose. The strong side effects seem to occur within 3-4 hours, and after than you may be better.
Another way to deviate is to take different dosages. say 200mg in the morning, and then 350mg a few hours before you leave work, and another 350mg at night. you get the picture, there will be a lot of experimentation with this drug because I suspect it will affect people differently.
another thing that strikes me is that maybe we can take it at 6 hour intervals. we would have to research this, and/or get a pharmacists opinion, but maybe if you were brave enough to do 1200mg, you could do 300mg X 4 times a day. or if you are doing 900mg, in order to function at work maybe space out lower doses in the morning and do the higher doses at night. The only problem with that is, as i said, this drug is dose dependant, so the light morning dosages might not even do anything. from my experience, it is not the fact that i am taking 900mg a day- it is the fact that i am feeling something whenever i put 300mg in my mouth, as opposed to any dosage lower than that.
Another question to ask is, do we need to be continuously on it? on some level we can say no, in that we are no epileptics. i see no reason why someone couldn't take the stuff on the weekends, and go on much lighter dosages on the weekdays during work. the crux of the issue though is that, i think it is important to let retigabine give you silence for an contiguously extended period of time (a few months, in the case of Mpt), so that the changes can be consolidated in your brain. in my opinion, it wont help if you are only getting relief some days of the week.
anyways, these are my thoughts on the subject, i invite people to look at this more carefully because I think dosage is key, and crafting a dosage schedule specific to tinnitus, and also specific to a given person, is important.
Member
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!!!) and he had no clue about retigabine.
