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Old 04-20-2015, 11:21 AM #1
Susanne C. Susanne C. is offline
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Originally Posted by canagirl View Post
Hi guys....

How long did gabapentin take to work for you? What dosage did you start at? How quickly did u work your way up? At what dosage did you start to feel relief? How do you know how high to go? I feel like I will just want to keep going higher and higher until I don't feel the pain anymore...but I have a feeling that's not going to happen so how do I know when to stop?
What did/does it feel like? Does it make some pain completely go away or does it just make it die down? Does it help anybody with anxiety? I am hopefully starting this tomorrow and want to know what to expect.

thanks again...
Yes it can help with anxiety and mood issues, but you may benefit from anti-anxiety meds as well. It may help you sleep even at beginning dosages. I would say I started to get relief from the burning and electrical zapping at 3x 300mg. daily. They moved it up to 3x600mg within a couple of months which is the most common dose. I am moving up to an extra 300 mg before bed, but this is after five years at the same dose.
It primarily works on burning pain when it works.
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Old 04-20-2015, 11:35 AM #2
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Yes it can help with anxiety and mood issues, but you may benefit from anti-anxiety meds as well. It may help you sleep even at beginning dosages. I would say I started to get relief from the burning and electrical zapping at 3x 300mg. daily. They moved it up to 3x600mg within a couple of months which is the most common dose. I am moving up to an extra 300 mg before bed, but this is after five years at the same dose.
It primarily works on burning pain when it works.
Thanks! this is exactly what I needed to hear.
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Old 04-20-2015, 12:12 PM #3
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I take Gralise (time release Nuerotin) 1,200 mg once a day. I take it before I go to bed so I sleep through the foggy side effects. Before that I took the regular Gabepetin at one point 600mg 3 X a day but I was able to get that done to 400mg 3X a day.

My analagy on it is you really don't feel it work, but you feel it when you miss a dose. You don't feel immediate relief like taking something for a headache. It sort of builds up over time, probally weeks depending on your dosage. They start you low and build you up, being patient is hard I know.

The burning & tingling are still there but a duller sensation if that makes any sense.

The Dr's have had me try Cymbalta (not for me made me an angry person) and Lyrica (too much weight gain). What I like about the Gralise is when I'm having one of those days (flares) I can take a regular Gabepetin 300mg sometime during the day and it takes enough of the edge off that I don't need something stronger.

I hope you find something that provides you relief, we all know none of this is any fun.
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history.
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Old 04-20-2015, 12:20 PM #4
canagirl canagirl is offline
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My analagy on it is you really don't feel it work, but you feel it when you miss a dose. You don't feel immediate relief like taking something for a headache. It sort of builds up over time, probally weeks depending on your dosage. They start you low and build you up, being patient is hard I know.

The burning & tingling are still there but a duller sensation if that makes any sense.

Ugh, I think I live in fantasy land. I was really hoping the burning and stinging would go away with gabapentin.

Mike - you are able to sleep through the night? Was that always the case or did your pain wake you up and keep you awake before taking med?

Also, why did you switch to gralise from gabapentin? Also, you down dosed? how did you know you could do this? why did you try it? how long have you been on it?

One more thing, if you don't know it's doing anything but feel it if you miss a dose then that doesn't seem like it gives much relief?....
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Old 04-20-2015, 02:10 PM #5
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Ugh, I think I live in fantasy land. I was really hoping the burning and stinging would go away with gabapentin.

Mike - you are able to sleep through the night? Was that always the case or did your pain wake you up and keep you awake before taking med?

Also, why did you switch to gralise from gabapentin? Also, you down dosed? how did you know you could do this? why did you try it? how long have you been on it?

One more thing, if you don't know it's doing anything but feel it if you miss a dose then that doesn't seem like it gives much relief?....
I know everyone is different and respond different to different drugs. My story is different than most, my nueropathy is a direct result of a critical illness. You can read about at the bottom of the post.

Taking the Gralise seems to help me sleep since its taken before bed and the side effects of Gabepetin or Nuerotin are drowsiness or tiredness.

I started at 100mg, then 300mg, then 400mg then 600mg during much of this I was still in physical therapy trying to get stronger from being sick. As I would complain to my Pain Dr, he would up the dose. As I got most of my strength back I was getting tired of the drowsy foggy feeling and was given the ok to scale back my dose to level where I could deal with the pain, 400mg 3X a day worked fine.

When Gralise came out my pain Dr thought I would be a good candidate for it so we started the dance with the insurance company to get it on my list of approved drugs. Its one of those that need special approval since its not a generic.

Once I get back to normal on Gralise I hope its the way it was before they had me try Lyrica. Where I really didn't have any ups or downs during the day since Gralise is a once a day time release drug verses taking a pill every 8 hours.

I still have bad days, flares as they call them, days that shoes, socks, blankets, water in the shower and even a cool breeze seem to hurt. In the 4+ years I've been dealing with this I've learned to savor the good days and more little things in life to be thankful for. The really bad days I've learned to give in and take a pain pill, sit down and not push it. I have an understanding wife that knows I'm just not sitting because I'm lazy, its because I really hurt.

I know I got lucky when my PCP referred me to a pain clinic, and I got a good doctor there. Once he understood I wasn't looking for narcotics and was in pain looking for a solution all was good.

Starting to take Nuerotin or Gabepetin isn't easy. You don't get immediate relief it slowly builds over time. If you take it 3X a day you might notice more pain at the 7 hour mark, sometimes you don't and its not until you feel the pain you realize its time for a pill because its been 10hrs. Then you take a pill and don't notice its working since its very gradual.

I hope you find a Dr to help you, one that will listen and help to give you something to help you sleep.

Sorry if this was long and some of it helps you.
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history.
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Old 04-20-2015, 11:21 AM #6
Enna70 Enna70 is offline
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Quote:
Originally Posted by canagirl View Post
Hi guys....

How long did gabapentin take to work for you? What dosage did you start at? How quickly did u work your way up? At what dosage did you start to feel relief? How do you know how high to go? I feel like I will just want to keep going higher and higher until I don't feel the pain anymore...but I have a feeling that's not going to happen so how do I know when to stop?
What did/does it feel like? Does it make some pain completely go away or does it just make it die down? Does it help anybody with anxiety? I am hopefully starting this tomorrow and want to know what to expect.

thanks again...
I didn't do well on gabapentin....or it's real one Neurotin...it added to my stress...but I have read that others here are doing well with it and others...
But that's us...you need to understand it might alone work for you and you need to take small steps....
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Old 04-20-2015, 01:32 PM #7
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[QUOTE=Enna70;1137028]I didn't do well on gabapentin....or it's real one Neurotin...it added to my stress...but I have read that others here are doing well with it and others...

Hmmm...if gabapentin doesn't work, should I try Neurontin? Does anybody find that the brand works but the generic doesn't?
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Old 04-21-2015, 10:22 PM #8
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Quote:
Originally Posted by canagirl View Post
Hi guys....

How long did gabapentin take to work for you? What dosage did you start at? How quickly did u work your way up? At what dosage did you start to feel relief? How do you know how high to go? I feel like I will just want to keep going higher and higher until I don't feel the pain anymore...but I have a feeling that's not going to happen so how do I know when to stop?
What did/does it feel like? Does it make some pain completely go away or does it just make it die down? Does it help anybody with anxiety? I am hopefully starting this tomorrow and want to know what to expect.

thanks again...
I finally have a diagnosis of CMT. I take 2700 mg of gabapentin each day and 90 mg of cymbalta. I start physical therapy this week. To soon to tell much of a difference. I had a better day today. This is the end of the road for me. Low impact yoga and stretching has been very helpful. My goal is to be able to drive and work again. Good Luck!!
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Old 04-22-2015, 08:59 AM #9
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I finally have a diagnosis of CMT. I take 2700 mg of gabapentin each day and 90 mg of cymbalta. I start physical therapy this week. To soon to tell much of a difference. I had a better day today. This is the end of the road for me. Low impact yoga and stretching has been very helpful. My goal is to be able to drive and work again. Good Luck!!
Do you know the type of CMT that you have? What affects are you having? Be careful with physical therapy. Hopefully the person will know something about CMT. You cannot build up atrohied/dead muscles. The healthy muscles up to a point. Just curious. Thank you.
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Old 04-27-2015, 01:07 PM #10
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I have gabapentin and instructions on how to start! I hope this works. The stinging, burning, needle, heavy, paralyzed feeling is intense. I have started to get muscle spasms and cramping along with the twitching... This sucks.

Still mentally in a whirlwind. Still don't think I will be able to cope even if Gabapentin works. My family is in shreds. My parents are fighting all the time, my dad has turned to drinking to cope. My husband is depressed, sad, feels helpless, hopeless, angry etc, trying to learn how to adjust to this new crappy life for us.

hope for healing is gone. hope for improvement is gone. hope to stop progressing is rapidly fading. I feel like my body desperately needs a massage. but I can't stand for anything to touch me let around rub me.

Something is being missed! I know it. Yet, I can`t doctors to do anymore testing (other than my biopsy later this month).
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