I am wondering what I am shooting for with effectiveness of my medication. I am still increasing dosage of gabapentin. Will the pain be completely gone? Should I aim for that? With some breakthrough pain sometimes? Right now, the shocks are only occasional and usually when I undergo some big temperature difference. Like when it is freezing outside and then I go into a warm house or vice versa. Then I get shocked, but not really painful. More annoying.
The pain in my face is fairly controlled..... some breakthrough but honestly, usually nothing so terrible as I can't bare it. Though I feel pressure ALOT in my ear and sinus area. Sometimes my gums.
Those that have effective pain management.... what is it I am aiming for? Will the meds control it pretty well and make everything go away? What is your experience with this.
With Neurontin, I believe you're unlikely to get 100% pain free condition, but scaling back the pain to 2-3 on a scale of 10 is a reasonable goal. "Success" is hard for a lot of doctors to define, but my personal version is "pain relief sufficient to restore quality of life and the ability to function professionally and socially, without disabling side effects." Neurontin offers that for a lot of folks (clearly not all).
My wife has been on 2700-3200 mg/day for the past 10 years, having switched from Tegretol at her own request. The only notable side effect has been word finding difficulty. Others have reported being made zombie-like at 600 mg/day. Individual response to the anti-convulsive agents is highly individual.
Thanks Red, that is what I was looking for. I am at 1200 right now per day. We are still uping it a bit and going to hold at 1800 to see what happens. I don't seem to have a word choice issue. My problem is this stuff is like speed for me. I now stay up all night. Which honestly is not a problem for me. I would rather live on little sleep then in pain! Plus, there always sleep aids or other ways to handle that.
Hi Lisa
My prolonged periods of time with. TN drug have been Tegretol and Gabapentin. LikeRed has said I have never had total pain free but both have worked very well for me. I have the worse side effects on Tegretol out of the two. My neuro is just now trying to wean me off Teg and back on to Gabapenin. At my request like Red’s wife. I prefer it out of the two.Teg makes me duller in every way. Gabapentin gave me a wonderful feeling of wellbeing.
I consider myself very lucky to be 90+ % pain free most of the time. I speak to members who would give their right arm to say the same.
It’s so strange how it is like speed to you. For me it gave me the best nights sleep of my life. Maybe that accounted in a large part for how well I felt. I was somewhat alarmed to read that here in the UK they give it to the criminally insane in prison hospitals to stabilise their moods!!!
Hope this helps you Lisa, I know how difficult it is to get your head around all that this condition has install for us. IMHO you are actually doing well right now and I hope you stay like that. Jackie
This is actually a very good thread. Probably each person has an idea in their head about what effective would mean to them. Ideally, of course, everyone would want no pain, but that, with this condition, is unlikely.
For me, I am going to keep trying various things until both the daily constant pain is at about a 2/10 and the severe pain down to a 3/10. So far, the anticonvulsants, when they work, get the daily pain down to a 2/10 (from the usual 5-7/10) but don't at all do anything for the severe pain.
So I will keep tinkering until something works. I think the other question is, at which point are the side effects more impactful than the pain in preventing a normal life. i.e. if someone is at a 4/10 and they can get to 2/10 by increasing the dose, but, by increasing the dose the side effects would get that much worse.
At some point its probably going to be some sort of trade off (or, keep looking for meds which have milder side effects).
An option to discuss with your neurologist, Jeff, may be to augment the anticonvulsants you are taking with a muscle relaxer or anti-spasmodic agent like Baclofen or Flexeril. Plan C may be augmentation with a tranquilizer at low dose (one of the benzodiazepine drugs like Valium).
Your insight on the trade-off between primary and side effects is quite sound. It is a trade that operates differently for each individual, though many can manage it with the help of their medical care provider.
Thanks guys..... I didn't really think I would get no pain. And I am happy to acheive a level of 3. Today we are at a 5. But I had several days of no pain to 3 at the most. Also, I don't think this is done evolving yet either.
Hi Red, actually trying that at the moment :) Added Zanaflex (similar to Baclofen, from what the Neuro told me) to the Tegretol a week or so ago. Haven't tried the Valium family yet, but if this doesn't work I will definitely bring it up.
I find both your quesion and the responses very interesting myself as this has also crossed my mind to. I am currently only on 450mgs of Pregabalin a day but have also been given cocodine to take alongside this which I don''t take as it makes me feel quite ill. I came od tegretol due to the side effects although it did seem to control the pain better than the Pregabalin does, it seems to me at the moment that you can either have less pain but with side effects to deal with or more pain and less side effects. I to suffer with word finding and I seem to have developed a stutter at times which is so frustrating!
I actually had a couple of pain free days this week and thought it had gone or that I never really had it in the first place but it came back with avengence yesterday and today has been even worse! So like yourself, I have wondered that, if, given the right level of medication, can the pain be fully controlled but I guess the answer is NO! Again, like yourself, if the pain could be kept at a lower level, I could manage it but it's so unpredicatabe and I just never seem to know where I am with it nor what to actually expect fron the nedications......but thanks to your discussion I guess I do now!
By the way, I have also heard of gabapentine been given to people in the community to stabalise their mood and until been put on similar medication, I never realised or appreciated just what effects people have to put up with and I now question whether such medication should be used in this way, but hey, thats a seperate discussion!