Nerve pain

[Al2006]

I am taking 900mg of Gabapentin a day now for my Nerve pain, which I am now told is Central Pain Syndrome. I went for four months after my stroke not sleeping more than an hour or so at a time. This is because my pain was so bad I could not fall to sleep until I dropped off from exhaustion. When I got a little rest, the pain would wake me until I would drop off again sometime later. My first Neuro put me on Gabapentin(Neurontin) and it helped to let the pain calm down if I lay still long enough. I could then fall to sleep, but I would still wake 15 or 20 times a night from pain. The problem is that any movement starts the pain right back up again. The first Neuro did not have me on the correct dosage of Gabapentin.

I now have a new Neuro that knows more about CPS. She has me on the min dose recomended by the manufacturer. She will start to adjust it when I settle in to it. It takes about two weeks to get a good start. The higher dose is working a lot better now. I can now sleep most of the night. But I still have bad pain as soon as I wake and move. My pain covers my whole right side, from my neck to the tip of my toes. My leg and shoulder are the worst. My neck, arm and back would be next in line.

My new Neuro tells me I am very lucky to be able to move, see, and talk because of where my stroke hit me. She says that I'm not so lucky with the CPS. She says that Stroke does not hurt. Things might not work correctly, but generally there is no pain. She also tells me that because I am relatively young, I'm going to have to fight this CPS for a long time. This is because the brain is always changing as we age. So what helps my pain now, might not work six months or a year or two from now. I'll have to go though the ebbs and tides of pain until we find what helps each time.

I am lucky to be self employed, as I can only work 5 or 6 hours until I cant take my leg any more and go home. I used to work 10 or 12. This stinks because I dont want to do anything when I get home. When I move I hurt, so I dont want to move. Walking up a slight grade or just two steps makes my leg burn like I've ridden a bicycle all day.

The purpose of CPS medication is to get the pain to a point where you can funtion. So I will always have pain, just hopefully at a level I can "live" with.

It is very hard not to get depressed. I am working on not being in a bad mood all the time. It is easy to get made at nothing when you are hurting. I look forward to sleep for the break I will get. Hopefully my Neuro can dull the daytime pain some more for me.

[dstraugh]

Al, it sounds like you and the new Neuro are on the right path. I hope you get some additional relief soon. Pain is difficult, at best, to deal with.

 

Hang in there. Come here to vent as we all understand the frustrations that one experiences after stroke.

 

Take care and (((hugs))))

 

[bstockman]

Al I have some CPS , not as bad as yours. I also was waking every 2 hours.

 

My Dr put me on Cymbalta 60mg daily. It is an anti depressant, it is used also for diabetic patients with neuropathy. It helps the body to re set you internal sleeping pattern.

 

I also take a multi vitamin a vit D later I take a Calcium tab with magnesium and zinc. later in the evening I take another Calcium tab.

 

My legs/calves still hurt some, but it is generally tolerable. I am sleeping at least 6 hrs then a short wake up ... to the bathroom and back to sleep for another couple hours. You may want to ask your neuro if any of this would be helpful to you. I am not on Neurontin yet.

 

I do have some Vicodan but take it only if I have to.

[lisas]

GOOD LUCK WITH THAT NERVE PAIN. WE TRIED 7 DIFFERENT ORAL MEDS WITH RACHEL AND BOTOX FOR PAIN. NOTHING WORKS FOR HER EXCEPT THE ULTRAM THAT HELPS HER TO FALL ASLEEP. THE OTHER PILLS MADE HER PASS OUT.

[Al2006]

I thank you all for understanding. It sure helps to write down thoughts and feelings. This is a tough thing to go though, as you all know full well. I hope the best for all of you also.

Al

[kanderson]

hi al, i do hope you continue to improve with the dosage change and you start to feel better. its good you are able to continue working. you might need to slow down alittle to get this under control. hang in there, and keep posting to let us know how you are doing.

kanderson

[danni3]

:blush: HELLO AL SORRY TO HERE ABOUT YOUR NERVE PAIN PROBLEM, FOR I TO HAVE THE SAME CONDITION,BEEN DEALING WITH IT FOR FIVE YEAR,BUT IT HAVE GOT BETTER,I HAD A BRAIN BLEED AND THE THALAMIC AREA,THAT CONTROL YOUR SENSITIVITY,YOUR SOUND ALMOST THE SAME GLAD YOU ARE BACK TO WORK BECAUSE THAT HELPS ALOT,I AM ON NURONTIN TO,BEEN ON IT FOR THREE YEAR THEY WANTED ME TO TAKE 3600MG A DAY BUT I ONLY TAKE 1600,IT HELP A LITTLE BIT,BUT WHAT REALLY HELP YOU ALT IS EXCISE TAKE A WALK EVERY NOW AND THAN DONOT BE AFRAID,IT HELP ALT GOD BLESS YOU.

[Al2006]

I do walk on weekends with my wife. I am supposed to walk as much as possible to try and slow down my Artery disease. For some reason the middle layer of my arteries is weakening. My Vasular Doc says that there are about 2000 documented cases in the world for what I have. I stroked because of an aneurism in my left Carotid. I now have one in the right. It is begining to hurt a little, Doc says that is not a good sign. But the bypass surgery, (they cut out my artery and replace it with a vein from my leg) is high risk for a stroke. So it is a case of what is worse, leave it in or take it out. I had my left Carotid replaced, it was at a point that it was causing stroke, so the surgery was worth the risk.

Right now the walk makes me hurt, its the movement. But I am at the first stage of working out the meds. I will go back to my Neuro after 4 weeks and she will try to adjust it. Being able to sleep is already a huge relief.

Al

[centralpain101]

al ......i am happy to read your dr has some knowledge of cps. you got lucky there! as for Gabapentin(Neurontin) it is usually the first of many meds to try out and yes you need to add amounts very slowly to avoid the side affects as best you can. as for amounts, some cps people need very very high amounts. so high i would not tell you what they are on this board. some get along with minor amounts. sometimes neurontin causes it to be worse so do stay on top of how its affecting you.

 

as for your walking and working. thats great! if you can do them without triggering the cps too badly. all movement will trigger cps. among many other triggers.

i look foward to your updates on how you are doing.

 

if i can be of any help just ask. at CPSA we keep a running meds leads list for members so always keep hope alive. if one does not work. there are lots of other things to try. sometimes its not just meds.

gentle hugs

mary simpson

www.centralpain.org