A simple thing to try is the addition of a small dose of amitriptyline (20mg or less) at night. It can be great for additional nerve pain relief, but is a bit sedating so it is best used at night.
I'm with your physician. If the Neurontin seems to be helping, but not enough, try it for several weeks and maybe request something to boost it a bit like the amitriptyline. We often make the mistake of not giving meds enough of a try and stopping them too soon if a) they don't seem to be working soon enough, or b) we don't like their side effects which often go away within a week or so.
That way, if it doesn't work then you know you gave it a thorough try. Yes, you could switch to Lyrica, but if Lyrica wasn't effective, you would be in the quandry of knowing you really hadn't legitimately been able to cross Neurontin off your list.
In a med that can be taken every 6 or every 8 hours you have fudge room to manipulate the dosing. Give yourself the full 8 hours or 8 1/2 hours you need for sleep and cut the other intervals to even it out. Also they make little alarm reminders that you can carry with a pill box in your pocket, so you can quickly take the next dose and not be a slave to your schedule.
Just some ideas.
Quix
Hey Sweetie,,
hey maybe i can help with this, my daughter has been on Neurontin for 3 years now. ever since her accident. she is on 3600mg so she takes 1600mg three times per day, this worked for a while till 4 months ago then the neuro pain was really bad again so they ADDED Lyrica a total of 450mg per day. Finally it is under control. I was worried about taking the both together. but with the help from her doc and all the pain she was in it was worth a try, and honestly it has helped her.
I hope you get some relief. I dont have Neuro pain myself but to watch what my daughter goes threw. it is really hard.
Prayers and Hugs
Ray
Here's a recent thread about pain meds. In it Quix references another thread too. I look forward to her new essay.
http://www.medhelp.org/posts/show/537733
As for me, Lyrica worked on the first dose, not after months. However, that was (is) a hefty one, 100 mg morning and evening. I was spaced out and sleepy (how wonderful) for 2 days. The max dose of Lyrica recommended is 300mg/day. There have been trials at as much as 600, but it didn't seem to accomplish anything more than the 300 level.
Now that I'm accustomed to it, Lyrica isn't working as well, but still things are much better than before. I'd call it a 90% improvement in my left leg, which has the lesser neuropathy, and about 50-60% in my right. I'll wait and see how things go, but haven't ruled out asking for a bigger dose or some combo of things.
ess
Does the Neurontin make you sleepy? I also take it for the pain in my feet. It doesn't make it go away but without it I would go insane. It also seem to help with my thigh muscles. They tend to work better when I take it. I only one pill 3x day because it makes me so sleepy and when the electric shocks hurt so bad and I have one toe that abosolutely is madden it feels like someone is pulling the skin down as hard as they can over the top of it. I'll then take 2 which does help. Probably If I took it as much as I am prescribed the above wouldn't be as bad but I need to be awake during the day.
Thanks for your comments. Like you, I don't understand the chemistry involved, but am willing to safely experiment to find whatever works best.
I also agree that having to live my life around a medication schedule would be horrible. On the other hand, it may not be too tough for me to incorporate such a schedule into my day. Most days I tend to awake briefly at 5am when my husband gets up. I usually take a bathroom break and head back to bed, and usually can fall back asleep. So I was thinking I could take a 900mg dose at 5am, 11am, 5pm, and 11pm. The only one that might be hard to remember is the 11am, but I'm sure over time I'd get used to it. I could set my cell phone to go off as a reminder or something.
I've considered Lyrica and asked my neuro about this and other alternatives. He said I could try something else, but encouraged me to give Neuronin a fair shot first, as I have only been on a high dose for a few weeks. He said it can take a good month or two at the highest dose for the best effect. I wonder if that is true for others here?
I do feel it wears off closer to my next dose. I also find the pain itself worsens as the day goes on, especially when I have more actively been using that hand - keyboarding, cooking, etc. A while back when I was on a much lower dose, I didn't think it was helping me, so tried to wean off it. I did notice the pain worsened so I stayed on it. However I would say for most of the time that now the pain is worse than ever. While all my other March relapse symptoms improved following IV steroids, this one sypmtom has gotten worse. It was suggested to me on this forum that this may be a newer mini-relapse in and of itself.
I do have some new lesions on my c-spine according to my latest MRI done in May; which does explain the source of this pain.
I too am interested in reading Quix's post about combining meds.
db
Could you direct me to Quix's post where she talks about a combination of meds? I can't find it. My Neuro and I are trying out different things now, but as yet, no relief.
Thanks in advance dearheart,
Heather
Hi, db. Wish I were more knowledgeable about the chemistry involved but I must confess I'm a total ignoramus on that score. However, that doesn't stop me (does anything??) from having a few comments.
First, you also need to consider your quality of life. Having to sleep and get up at precise times and plan your life around this is horrible, and in my opinion should be avoided if at all possible. Neurontin is not the only act in town and you're already on a high dose. Do you think it's helping at all? And does it seem to wear off at or before the times you normally would take it?
There are a lot of pain meds out there. Most people with neuropathic pain are now on Lyrica, which is sort of Son of Neurontin. But even that isn't the end-all or be-all. Quix wrote a lot recently about using a combination of meds, and that this often works out well. I think your neuro should be suggesting alternatives and options at this point.
ess