Post by susan on Aug 2, 2008 19:37:48 GMT -6
I was interested in the dosages of Neurontin people are on and how they are managing.
I have persistant pain in my neck, head, ear and chest that is making it hard to get back to the level of activity I had been at prior to surgery. I really need to get back to full time at work.
I am in the process of increasing my Neurontin dose to 900 three times a day.
I've read on this forum that it makes people sleepy, but not me. I get a little euphoric the first day or two after I increase the dose, but that passes. It is almost alarming, the dosages of that stuff you can take. Usually I am really sensitive to drug side effects, but not this one. The worst part is swallowing all of those capsules.
I have found that the usually suggestions for pain relief do nothing at all. As a matter of fact, some make it worse. I've had doctors say "take a hot shower", well that seems to make my arm and shoulder feel more spastic. I'm all in a knot by the time I am done.
I had asked about trying Lyrica. My PCP said insurance companies don't like to pay for that except for FDA approved uses (ie-fibromyalgia). I said "what are the FDA approved drugs for neuropathic pain after spinal cord tumor? I doubt that there are any." That's when we decided to max out on the Neurontin.
I don't know that there are enough of us for drug companies to make enough money to make it worth it to them to trial a drug. Fibromyalgia they can make money on, but not spinal cord tumors.
From reading the posts on this forum, you realize that each one of us has our own weird symptoms left after surgery. I guess it would be hard to find any one drug that would work for all of us.
I guess you have to keep trying until you find something that works. (and hope your insurance pays for it).
I told my PCP that the spinal cord rehab doctor told me Neurontin is plan "A", if that doesn't work, Lyrica is plan "B". He asked what "C" was. I said, "hmm, I guess that would be Time". There wasn't any other suggestions except just suck it up and deal with it.
I have persistant pain in my neck, head, ear and chest that is making it hard to get back to the level of activity I had been at prior to surgery. I really need to get back to full time at work.
I am in the process of increasing my Neurontin dose to 900 three times a day.
I've read on this forum that it makes people sleepy, but not me. I get a little euphoric the first day or two after I increase the dose, but that passes. It is almost alarming, the dosages of that stuff you can take. Usually I am really sensitive to drug side effects, but not this one. The worst part is swallowing all of those capsules.
I have found that the usually suggestions for pain relief do nothing at all. As a matter of fact, some make it worse. I've had doctors say "take a hot shower", well that seems to make my arm and shoulder feel more spastic. I'm all in a knot by the time I am done.
I had asked about trying Lyrica. My PCP said insurance companies don't like to pay for that except for FDA approved uses (ie-fibromyalgia). I said "what are the FDA approved drugs for neuropathic pain after spinal cord tumor? I doubt that there are any." That's when we decided to max out on the Neurontin.
I don't know that there are enough of us for drug companies to make enough money to make it worth it to them to trial a drug. Fibromyalgia they can make money on, but not spinal cord tumors.
From reading the posts on this forum, you realize that each one of us has our own weird symptoms left after surgery. I guess it would be hard to find any one drug that would work for all of us.
I guess you have to keep trying until you find something that works. (and hope your insurance pays for it).
I told my PCP that the spinal cord rehab doctor told me Neurontin is plan "A", if that doesn't work, Lyrica is plan "B". He asked what "C" was. I said, "hmm, I guess that would be Time". There wasn't any other suggestions except just suck it up and deal with it.
