Right now I think maybe I should just resign myself to a dizzy, rocking fate. WHAT light at the end of the tunnel?
Hain upped the Neurontin from 600 to 900. But given that Neurontin’s bioavailability is low, then even if you take 900 mg, your body doesn’t get that much available to use. So if you want the body to actually have 900 mg to USE, shouldn’t it require taking more than that?
So, MAV marches on. Neurontin’s “not potent” rating seems accurate. Last week was about the single weirdest – and also WORST – week so far. And I think the Valium really is starting to “pack its bags”; I’ve had it 3x this week, and it just didn’t work like it used to. That for me is a very troubling prospect. I really can’t do much of anything without it – especially now that the sensations are intensifying again.
I’m only ~2 weeks into Neurontin, and a “fair trial” is at least 4 weeks or more, but I’m not optimistic about it – OR any other drug, at this point. Ramming my head into a wall probably would yield more results than any medicine I’ve had so far!
I remember an episode of “House M.D.” where they put him in a ketamine-induced coma for two days to try to cure his chronic pain. Apparently this is a real treatment (at least in Germany) and the idea is sort of akin to a “brain / CNS reboot.” If it was here in the U.S. I’d look into it. … Or a lobotomy.
What am I going to do with myself?, he asked, albeit rhetorically, knowing that no one has the answer. I’m getting tired of waking up each day.
Hi George,
Sorry about your frustration. I’m right there with ya:-( I apologize if you already answered this, but have you tried topamax yet and if so what was your experience. Topamax is much more potent than neurontin and since they are in the same class I was wondering why Hain didn’t start you on that instead.
You are still very early on your trial so don’t give up hope just yet!
lisa
The order is: Neurontin, Keppra, then Topamax. He chose it because I said I was having a lot of problems with medicine sensitivity, so he went for the best-tolerated first.
Maybe he should’ve Rx’d Lyrica instead of Neurontin. Supposedly that’s a more potent form.
George - sorry to hear that. I feel for you, as I know exactly what you’re going through. I, too. hate waking up to this everyday. We’ll get through it and better. Remember, that Neurontin wasn’t Hain’s first choice, so hopefully something more potent will due the trick. I realize that I have no choice but to contend with med side effects in order to get better. This all sucks. Hang in there as best as you can. wishing you much better days ahead
I personally believe that toleration has a lot to do with titration frequency vs. dosage. If you start at a higher dosage and titrate faster, you are going to have more side-effects on any med. I STARTED with topamax, but went extremely slow, so it was tolerable. And it was the drug that took away my MAV. I fortunately didn’t have to go searching through many of the meds. I was told it had an 85% success rate and I was sold. It worked for me. But then again, not every drug will work for everyone of course. I know that. But my only point is that starting slow and at a lower dosage will almost always solve that problem, at least the harshness of it. If the side-effects are going to come, they are going to come, at any dosage. I just believe they will be far more manageable at the lower titration schedule. Just a thought