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Post by bigwignh on Sept 14, 2010 20:24:55 GMT -6
Neurotin hasn't worked for me. I'm going back to the opiates.
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Post by paul55 on Sept 19, 2010 17:50:10 GMT -6
I've been on Gabapentin and Baclofen for a while now and both meds seem to give me some relief. The Gab takes the unbearable burning sensation out of my right arm enough to make it bearable. I'm on 400 mg 3x per day. Which isn't much compared to others. The baclofen helps with spasms in my legs mostly at night so I can sleep. I take 20mg at night and 30mg during the day if I need it.
From what I've read about others on this forum, I guess it doesn't seem to work for everyone. And it seems to be a drug that takes some time to get the correct dosage for it to work, even if it does. I did however find that I was on 300 mg 3x per day and I had to up it to 400mg. I guess we'll see if that has to happen again!
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Post by vtgirlinfl on Jun 22, 2011 13:05:11 GMT -6
I have been on Gabapentin for a month 300 mg (4 times daily) I am finding that this past week when my Dr upped my dose that I am much more tired. It helps some with the pain in my back as far as sensation goes (It was hard to put a shirt on before) but it has done nothing to help with my legs. I have serious sensation loss from a spinal cord injury from the size of the tumor I had and I also have myelomalacia of the spinal cord so basically I may be fighting this battle for a long time. Oh I might add that I am on pain killers and baclofen and a norflex at night to even begin to control the pain
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Post by Mystonia on Aug 16, 2011 8:29:22 GMT -6
I was on 1800 mg neurotin for for close to 2 years and had to be pulled off of it because it was starting to cause neurological defects (like I needed more of that! ). The neurotin kept me at around a 7 on the pain scale. No great, but better than without it. I was switched over to Lyrica which is keeping me at about the same as the neurotin, but without the neurological side effects the neurotin was causing. The only downside is the weight gain.
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Cathy
New Member
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Post by Cathy on Aug 16, 2011 8:47:39 GMT -6
If you do wean off, I suggest you do it VERY slowly. When I first tried, my doc had my on an aggressive weaning schedule and it was so awful I ended up back on the full dose again for several months. I went on my own weaning schedule, reducing slowly as my body felt it had adjusted to the new level over a good 6 months and now I no longer need it. I do still have prickling but it's bearable.
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Post by vtgirlinfl on Aug 17, 2011 13:05:06 GMT -6
I tried neuronton and it didn't help much and the side effects were horrible . Just my opinion. I was sleepy and has gastro issues as well.
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Tammy
New Member
Posts: 3
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Post by Tammy on Oct 5, 2011 13:45:39 GMT -6
So, after reading this whole session, am I right in assuming that the burning never goes away and there is not much you can do about it but live with it? Good times, livin' the dream!
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Post by jtsky7 on Oct 14, 2011 17:23:55 GMT -6
Tammy hang in there. I had hemangioblastoma c2 to T2 removed in 1993 and have had severe nerve pains and spasticity issues ever since. I have tried every possible med for pain. I have not found anything that gives me any relief without severe side effects. So I have decided to forgo any meds and accept my pain. It can be depressing to deal with but I am blessed to be alive.
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Post by rustylynn on Oct 27, 2011 23:37:06 GMT -6
Tammy, I feel your pain. At night when I finally get in bed and comfy. (takes a few, still heavy on the right side) My legs are on FIRE. And just the other night my stomach was on fire too. I have never had that happen. All my weird feelings that have been happening, NS said it was normal? I'm so sick of being in pain, I don't think people understand. I guess I need to start screaming and crying for them to get them to realize how bad it is!........... A bridge is starting to look really good.
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Post by rustylynn on Oct 27, 2011 23:38:59 GMT -6
neurotin does help but I really have to stay on top of it. I have gained 10 pounds which adds to my frustration. Hang in there!
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