10 replies to this topic

[emerj101]

I'm a para, T6 complete, who was injured 15 months ago. I have had varying degrees of neuropathic pain over this past year but as my physical pain has settled down, I've found my np pain getting worse. It has gotten to the point now where every night I have intolerable pain. I take sedatives to sleep. I've read a lot of your blogs and this seems like the place for me to be. I've taken Lyrica, Topamax, and Gabapentin(which is the only one that works at all but really doesn't do much and I'm up to 3600mg a day). Smoking pot helps but I dont want to spend the rest of my life blazed and irritable. To anyone SCI with time under their belt, or anyone with valuable input...Does time make a difference? I have heard a couple of paras tell me that it settles down after 3-4 years but I need more info. I need help...in a bad way!

Edited by emerj101, 07 January 2008 - 08:54 PM.

[kewlcatkez]

emerj101, on Jan 7 2008, 08:45 PM, said:

I'm a para, T6 complete, who was injured 15 months ago. I have had varying degrees of neuropathic pain over this past year but as my physical pain has settled down, I've found my np pain getting worse. It has gotten to the point now where every night I have intolerable pain. I take sedatives to sleep. I've read a lot of your blogs and this seems like the place for me to be. I've taken Lyrica, Topamax, and Gabapentin(which is the only one that works at all but really doesn't do much and I'm up to 3600mg a day). Smoking pot helps but I dont want to spend the rest of my life blazed and irritable. To anyone SCI with time under their belt, or anyone with valuable input...Does time make a difference? I have heard a couple of paras tell me that it settles down after 3-4 years but I need more info. I need help...in a bad way!

hi Emerl101,

From my own pain struggles perspectives, I think that although pain does not decrease for me, perhaps my coping mechanisms become more effective. I know for certain that the fact that I *have* to do things through out the day, especially term time, having young children, means that I have had to hone the methods which I use. I can;t say its one thing in particular, and I still hardly sleep, but I manage to deal with it much more than I initially did. For instance, now I make myself lay/recline propped up - and try and relax, even when I can't sleep. In the day time I try and block it by regulating my breathing etc. Its not much of a help, but for me, doing something takes the panic out of it all. In the beginning time, all I could do was think about trying to relieve it, somehow. I guess I am resolved to it all, yet I live in hope that each day will bring less or no pain.

So, in terms of your question, I would like to say that I cope better in spite and despite of it all. I haven't had any experience of it lessening noticeably personally, although one or two of those whom I Nursed (in a pervious life) had drastic reductions in Nerve pain, using a couple of methods. However this was as a result of a drug in one ( which unfortunately I have tried as have you (Topamax) and the other was a Person with Neuro pain (he was not paralysed) who swore that God healed him..oh and he did have a spinal block... I have also heard others talk of Pot helping, although as it causes relaxation, my dislocations increase. Like you say, there must be another way. Others still have talked like you say, about lessening of their pain, or perhaps it changes to another more readily counteracted form?


I have been a chair user ( I would say in a chair, but that makes me sound glued there!) for over 2.5 years and had/have had issues with daily dislocations and varying degrees of paralysis/parasthesia ( until that fateful day) and I have 4 or so different types of pain which are still very much there. However, I am not a straight forward case as I have a connective tissue disorder (ie the dislocations etc), and an underling pain fatigue condition related to this, as well as paralysis. All these may contribute to that "neuro" nerve pain, although they are all different types of pain. Who knows, maybe the collective bunch leads to overload neurologically?. (Scientists DO actually think this may be the case with some people - a kind of over sensitization, which the body needs 'resetting' from).

A poster a little while ago on another thread reminded me that drs often use "neurological pain' as a label in order to pass the can a bit on something they are failing to treat.

I wish you much luck with finding something to ease your pain in the interim - be it coping mechanisms, which you clearly have already or medications etc. I also hope that as time progresses that you will be one of those people who has a dramatic reduction in your pain levels. Please do come back and give testimony if you do!..and continue to chat with us (as you wish) even if you don't!


Take care,

K

[LuckyinKentucky]

You sound alot like me, and am currently the only other person I've heard from whose Neurontin dose is the same... that is when I took em. I tried the others you listed as well to little avail. Actually the one that helped the most was desiperamine, which took away most of the pain but also most of my ability to think rationally. It came to the point where I got fed up with it and just gave up the pills alltogether... I thought about going back to Neurontin but it never really got rid of the pain anyways just kinda switched it from stabbing to burning. For the first month or two while all the nerve pills were trickling out was really up and down; some days being excruciating and makin me cry out & all and others just hurting like hell. After a while it kinda leveled out and i started to be able to identify triggers and various things i can do or positions to move into that help it a bit. But the best thing that helps is to try to not think about it. I mean hell it's gonna come and it's gonna go so why bother worryin about when, anyways it shuts up quicker if you ignore it. ...now (2 yrs pill free) very rarely will pain stop me from what I'm doing... That being said as I've been writing it has been pulsing but it's only a slight nuisance... one I've now gotten pretty good at ignoring.

[Mikerowaved]

I'm also on 3600mg/day of Neurontin and you're right, it only helps to a point. I was on 4800mg/day for almost a year, but the insurance wouldn't cover the excess and I got tired of fighting them. Besides, the added benefit was very minimal. Neurontin reaches a point where a 20% increase in dose may only give you 3-4% more relief. Every now and then things get out of hand (where I don't want to even put a shirt on). For those times I pop a tiny little 2mg opiate pill called Levorphenol. That always brings relief for me as long as I don't take them too often and build up a tolerance.

My injury was 7 years ago and I have to say (at least in my case) the NP hasn't gone down at all. Everyone is different, so please don't be discouraged. Yours just might taper off after a while. Who really knows?

Tomorrow I have an appointment to see my doc about trying a generous dose of Lyrica in place of Neurontin. I don't know if it will perform better or worse, but I'm going to give it a try. Supposedly, Lyrica is Pfizer's "new and improved" version of Neurontin that works on similar receptors, only with a much lower dose. Yeah, we'll see.

[dave420atya]

I have found relief with Lyrica but only at 300mg all at once and in about an hour no pain . I tried 150 mg 3 times a day with no luck , but 300gm did the trick. After several years of severe nerve pain I am over joyed to find relief. My doc. has no idea that I increased my dosage and probabaly would not like it but I don't care cuz now I don't hurt . I will find a new doc that will listen to me if she won't renew my perscription with my newly found dosage that works. No one should have to live in pain if there is something that works to alieve it. Good luck to all who seek help and relief.

[smokymtn memories]

I'd sure like to think this burning pain will go away, but so far, no luck. It's been bothering me 24/7 now about a year and a half. The neuro surgeon tried telling me it was a good sign for healing and should stop eventually. I'm way over that and just wish it would stop!

I take gabapentin 300mg three times a day. I can tell it eases it, but not enough. Some days it's hard to function because of pain. Wish I could tell you it will all go away. I'm going back again the end of the month, we're going to talk about qualitiy of life and burning pain, whether he wants to or not!

[LuckyinKentucky]

For me Lyrica worked almost as good as skittles, I think it's designed for peripheral... but good luck!

[emerj101]

Thanks to all of you who wrote back with your suggestions, experiences, and empathy. You have given me some good leads to go on and that gives me a measure of hope. Please keep writing for anyone who has anything to contribute. The one thing I read often is that everyone is unique in our injury and no two of us experience it quite the same. I'm really looking at coping with (rather than treating) my neuropathy right now because it's so intense 24/7. Meditation, cognitive suggestion and many other techniques have had mixed results, if any. People normally don't have any frame of reference for this type of pain and can't relate. It's like trying to explain to someone who was born deaf what a violin sounds like...right?

[Mikerowaved]

smokymtn memories, on Jan 8 2008, 07:41 AM, said:

I take gabapentin 300mg three times a day. I can tell it eases it, but not enough. Some days it's hard to function because of pain. Wish I could tell you it will all go away. I'm going back again the end of the month, we're going to talk about qualitiy of life and burning pain, whether he wants to or not!

Have your doc look into bumping the dose up. You are a long ways off from the max recommended and have a lot of "wiggle room" right now. Just keep a close watch for some of the listed side-effects. (I don't seem to get many, but everyone is different.) Also, since the half-life of Gabapentin is roughly 4-6 hours, I found better relief by taking it 4x a day rather than 3. It's definately harder to keep on schedule, especially overnight, so I tend to go 7-8 hours or so overnight, then ~5 hours between doses during the day. The 4x/day schedule has helped a lot to keep the pain from peaking while waiting to take the next dose.

[roy]

Mikerowaved, on Jan 8 2008, 07:33 PM, said:

smokymtn memories, on Jan 8 2008, 07:41 AM, said:

I take gabapentin 300mg three times a day. I can tell it eases it, but not enough. Some days it's hard to function because of pain. Wish I could tell you it will all go away. I'm going back again the end of the month, we're going to talk about qualitiy of life and burning pain, whether he wants to or not!

Have your doc look into bumping the dose up. You are a long ways off from the max recommended and have a lot of "wiggle room" right now. Just keep a close watch for some of the listed side-effects. (I don't seem to get many, but everyone is different.) Also, since the half-life of Gabapentin is roughly 4-6 hours, I found better relief by taking it 4x a day rather than 3. It's definately harder to keep on schedule, especially overnight, so I tend to go 7-8 hours or so overnight, then ~5 hours between doses during the day. The 4x/day schedule has helped a lot to keep the pain from peaking while waiting to take the next dose.

hello to all,
i'm new and this is my first contribution, i had a tra 21 years ago, now wheelchair user, for all that time. have been on tegretol carbamazapine 400mg x 4 and cabapentin x2 daily. although the pain never goes, it is manageable, without the tabs, i could not be able to wear socks or put shoes on.
sorry to say, the pain never goes away; except if you make the limb go to sleep. boy is that a good feeling, for me anyway. i sit on my legs, they go to sleep, i am pain free for a while..
take care and keep well all
regards roy

Edited by roy, 16 January 2008 - 06:28 PM.

[kobesgamma]

Mikerowaved, on Jan 8 2008, 04:21 AM, said:

I'm also on 3600mg/day of Neurontin and you're right, it only helps to a point. I was on 4800mg/day for almost a year, but the insurance wouldn't cover the excess and I got tired of fighting them. Besides, the added benefit was very minimal. Neurontin reaches a point where a 20% increase in dose may only give you 3-4% more relief. Every now and then things get out of hand (where I don't want to even put a shirt on). For those times I pop a tiny little 2mg opiate pill called Levorphenol. That always brings relief for me as long as I don't take them too often and build up a tolerance.

My injury was 7 years ago and I have to say (at least in my case) the NP hasn't gone down at all. Everyone is different, so please don't be discouraged. Yours just might taper off after a while. Who really knows?

Tomorrow I have an appointment to see my doc about trying a generous dose of Lyrica in place of Neurontin. I don't know if it will perform better or worse, but I'm going to give it a try. Supposedly, Lyrica is Pfizer's "new and improved" version of Neurontin that works on similar receptors, only with a much lower dose. Yeah, we'll see.

I have been taking Neurontin for 2 years, along with Vicodin, and Excedrin. After reading Mikerowaved’s post I decided to increase the dosage of my Neurontin. I had been taking 1800 mg’s a day, I have increased it to 2400mg’s a day. My pain has diminished, but of course I am even more screwier than before. Have been an incomplete L3, with Cauda Equina Syndrome for 30 years. Sure seems like we are trying to find something that is beyond our grasp. My pain, and all my symptoms have increased over the years, seems like I trade one pain for another.

Edited by kobesgamma, 14 May 2008 - 04:18 AM.