A Little Help Maybe - Page 2

t8burst · 04-10-2012, 10:23 AM

Quote:

Originally Posted by macska

I would have ripped a new ass on that nurse.

Yeah, I am pretty tired of people judging me without knowing my history. But the mole was on my eyelid so I figured it was probably a good move not to piss anyone off before they stuck a cauterizer that near my eyeball

SuprSi · 04-10-2012, 11:02 AM

How long did you try the lyrica, and gabapentin and what dosages did you go up to?

I'm on Amitriptyline (which i don't think is doing anything) and lyrica 75mg 3x daily. My experience with Lyrica is that it begins to wear off fairly quickly (~6hrs), but it takes a few days to wear off completely. I ran out a few days ago and boy do I know it, so that's working for me at least! From what I've read you can go up to 300mg per day, so I can up my doses to 100mg x3 if i need.

If nothing is working then narcotics sound like the only thing that'll work. I'm fortunate enough to not be at that stage yet, but at least I know there's another level if the pain gets worse. T8's a great guy to talk to because he's tried a lot and found what works best for him. The only thing to keep in mind with opiods is withdrawl if you stop suddenly, so be very careful not to run out (this is from reading other's experiences, not my own). This isn't 'addiction', it is 'dependence'. A lot of people seem to get that mixed up.

Also, a soak in a hot bath helps me, or the warm hydro pool at the rehab centre was great while I was there. Public swimming pools are too cold to help though. Even with the meds that seem to work for me, every now and again I have a 'bad day'. The only thing you can do is curl up in bed and listen to music.

Quote:

Originally Posted by t8burst

Yeah, I am pretty tired of people judging me without knowing my history. But the mole was on my eyelid so I figured it was probably a good move not to piss anyone off before they stuck a cauterizer that near my eyeball

Good call, what a bitch though

Patrick Madsen · 04-10-2012, 11:59 AM

My apologies, didn't mean for it to sound that way. Of course you are right about managing pain effectivley.

Quote:

Originally Posted by t8burst

"pit of addiction" really? In the pain forum? Sometimes opiates are the only thing that allow you to manage your pain effectively and nothing else will. Exercising is good advice, but don't stigmatize opiate use the walkers do that enough as it is.

lonecoaster · 04-10-2012, 12:15 PM

I thought you meant incomplete's. I believe you and guys like arndog, and many others here, that it is the only option you have. So no offense meant. For others there are other options. And it's still a "pit of addiction" anyway you look at it.

smokymtn memories · 04-10-2012, 08:15 PM

I can't look at it as a "pit of addiction"......after so many years, and so many medications, it is a life line. And even that does'nt work quite often, but without the morphine, percocet, gabapentin, and methocarbamal......I can't function at all. Is it something I want? No. But, if I want any kind of life at all, and there it is.......

I spent the first years with nothing, then the gabapentin (and I tried Lyrica), and there have been so many others I've tried I don't even remember the names anymore. Medications for seizures, for depression, and all to fight a burning pain that never goes away and grows stronger and larger every year. Until finally a couple of years ago I gave up and went to the pain clinic my neuro surgeon wanted me to to go. At last I had days I did'nt cry all day. But there was a trade off.......now I had to sign a contract, use the same pharmacy, be subject to drug testing, and a page full of other rules and regulations.

And one of the worst things is how people look at you when they find out what meds you take! There is such a stigma to chronic pain and the treatment. Even from the medical world, which I found hard to believe at first. Sadly, I've gotten use to it, and should'nt have to! But in the medical world today they are sadly under educated regarding chronic pain and SCI.

And to answer your question JC USMC, there are medications that will help. Possibly even the one you are taking at a higher dosage. I started out small, and have had to go to four times a day 800mg of Gabapentin. The only thing you can do is trial and error. Don't give up, sometimes it takes a while to get the right combination of medications.

JC_USMC · 04-10-2012, 11:49 PM

Quote:

Originally Posted by SuprSi

How long did you try the lyrica, and gabapentin and what dosages did you go up to?

I'm on Amitriptyline (which i don't think is doing anything) and lyrica 75mg 3x daily. My experience with Lyrica is that it begins to wear off fairly quickly (~6hrs), but it takes a few days to wear off completely. I ran out a few days ago and boy do I know it, so that's working for me at least! From what I've read you can go up to 300mg per day, so I can up my doses to 100mg x3 if i need.

If nothing is working then narcotics sound like the only thing that'll work. I'm fortunate enough to not be at that stage yet, but at least I know there's another level if the pain gets worse. T8's a great guy to talk to because he's tried a lot and found what works best for him. The only thing to keep in mind with opiods is withdrawl if you stop suddenly, so be very careful not to run out (this is from reading other's experiences, not my own). This isn't 'addiction', it is 'dependence'. A lot of people seem to get that mixed up.

Also, a soak in a hot bath helps me, or the warm hydro pool at the rehab centre was great while I was there. Public swimming pools are too cold to help though. Even with the meds that seem to work for me, every now and again I have a 'bad day'. The only thing you can do is curl up in bed and listen to music.

Good call, what a bitch though

I'm on 1200mg gabapentin 3 times a day. 75mg amitryptiline at night mainly to help with sleep, but has had no effect on the pain. was on 75mg lyrica 2x a day for around 2 weeks with no results, stopped only because of some insurance issues. I go to the Dr. in the morning so I'll let y'all know how that goes. BTW y'all can call me Jason. Thanks everyone for the feedback and support, really glad I found this forum, seems like an awesome place.

t8burst · 04-11-2012, 12:11 AM

Quote:

Originally Posted by lonecoaster

I thought you meant incomplete's. I believe you and guys like arndog, and many others here, that it is the only option you have. So no offense meant. For others there are other options. And it's still a "pit of addiction" anyway you look at it.

Sorry, I picked up "walkers" in rehab. I meant AB people not incompletes, I shouldn't use the term.

David Berg · 04-11-2012, 12:23 AM

Quote:

Originally Posted by JC_USMC

I'm on 1200mg gabapentin 3 times a day. 75mg amitryptiline at night mainly to help with sleep, but has had no effect on the pain. was on 75mg lyrica 2x a day for around 2 weeks with no results, stopped only because of some insurance issues. I go to the Dr. in the morning so I'll let y'all know how that goes. BTW y'all can call me Jason. Thanks everyone for the feedback and support, really glad I found this forum, seems like an awesome place.

It's not uncommon for people with neuro pain from SCI to go up to 4500 if necessary, and I have heard of a handful of cases where people went significantly above that. Arndog, another mod here, can speak better to appropriate lyrica dosages, but it seems to me like you might have been able to go higher before tossing in the towel. I definitely think your doctor could have had you try it for longer than 2 weeks if insurance wasn't in the way, so if you have a chance you might give that another shot.

faceplant · 04-11-2012, 09:29 AM

I agree that you can go up much higher on the gabapentin and the Lyrica dose was pretty low too. I think Arndog suggests it works better 3x a day. Neither medication worked for me and I was changed to Topamax and then I use Percocet for break through pain but I still am never pain free. I think different things work for different people you are probably going to have to try a few things to see how you can manage your pain. I will say welcome to the group sorry you had to find your way here but you can find strength in numbers there are lots of people who can really give you useful information because they have walked the same path. I hope you can find something to assist you with your pain.

POPO367 · 04-11-2012, 10:26 AM

Jason,
Are you a Veteran? If so, are you being seen at a VA Hospital? You are still fairly new to SCI so your body might still be going through changes. I had pain the first year and then the pain went away. I have met others who have not stopped having pain, everyone is different. What works for one, won't work for others.

Enrique

04-11-2012, 09:29 AM	#19
faceplant Senior Member Join Date: Oct 2011 Location: MN Posts: 110	I agree that you can go up much higher on the gabapentin and the Lyrica dose was pretty low too. I think Arndog suggests it works better 3x a day. Neither medication worked for me and I was changed to Topamax and then I use Percocet for break through pain but I still am never pain free. I think different things work for different people you are probably going to have to try a few things to see how you can manage your pain. I will say welcome to the group sorry you had to find your way here but you can find strength in numbers there are lots of people who can really give you useful information because they have walked the same path. I hope you can find something to assist you with your pain. __________________ ACDF C5/C6, C6/C7 9/2011& Central Cord Syndrome

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04-10-2012, 12:15 PM	#14
lonecoaster Senior Member Join Date: Feb 2011 Posts: 890	I thought you meant incomplete's. I believe you and guys like arndog, and many others here, that it is the only option you have. So no offense meant. For others there are other options. And it's still a "pit of addiction" anyway you look at it.

04-10-2012, 08:15 PM	#15
smokymtn memories Senior Member Join Date: Jul 2007 Location: Sevierville TN Posts: 2,188	I can't look at it as a "pit of addiction"......after so many years, and so many medications, it is a life line. And even that does'nt work quite often, but without the morphine, percocet, gabapentin, and methocarbamal......I can't function at all. Is it something I want? No. But, if I want any kind of life at all, and there it is....... I spent the first years with nothing, then the gabapentin (and I tried Lyrica), and there have been so many others I've tried I don't even remember the names anymore. Medications for seizures, for depression, and all to fight a burning pain that never goes away and grows stronger and larger every year. Until finally a couple of years ago I gave up and went to the pain clinic my neuro surgeon wanted me to to go. At last I had days I did'nt cry all day. But there was a trade off.......now I had to sign a contract, use the same pharmacy, be subject to drug testing, and a page full of other rules and regulations. And one of the worst things is how people look at you when they find out what meds you take! There is such a stigma to chronic pain and the treatment. Even from the medical world, which I found hard to believe at first. Sadly, I've gotten use to it, and should'nt have to! But in the medical world today they are sadly under educated regarding chronic pain and SCI. And to answer your question JC USMC, there are medications that will help. Possibly even the one you are taking at a higher dosage. I started out small, and have had to go to four times a day 800mg of Gabapentin. The only thing you can do is trial and error. Don't give up, sometimes it takes a while to get the right combination of medications.

04-11-2012, 10:26 AM	#20
POPO367 Senior Member Join Date: Nov 2006 Location: anaheim, ca Posts: 242	Jason, Are you a Veteran? If so, are you being seen at a VA Hospital? You are still fairly new to SCI so your body might still be going through changes. I had pain the first year and then the pain went away. I have met others who have not stopped having pain, everyone is different. What works for one, won't work for others. Enrique