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Nerve Pain...ARGHHH!!!!

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Posted 7/19/2007 3:52 AM (GMT 0)
Hey Everyone

I need to ask anyone who's had experience with nerve pain a question. I'm having much more lately. It's always been mostly in my legs, but somewhat in my arms as well. Lately it's much more in my arms and extremely increased in my legs. The pain is like a shooting, sharp pain that starts in one place and stops in a pretty straight path out from the beginning point. It shoots over and over and rests in the same place each time. The prob is it's really increased! Lots more and lots more often. I almost never have a time when it's not present now and it's in the oddest places. My ankles, shins, fore arms, biceps,hands and fingers, thighs and feet. Sometimes in or around my spine, but not as much. Ok, the question...I take Neurontin and last night had to take three of them. That's 300mg's total. I took two before bed and one in the night...prob about midnight. I slept til 11:00!!! I can't do that!! I was pretty tired when i went to bed, but even still i don't usually sleep that late. I know many have asked this before, but i never remember anything. Can u tell me what the other meds are that maybe I should ask for...that won't knock me out?? Thanks everyone!

Posted 7/19/2007 4:19 AM (GMT 0)
Hi Rhinda,

sorry....can't be of any help. But wanted to say that I'm thinking of ya....must be awful!

Hope you find an alternative drug soon!

Kas

P.S. Rhinda was a typo...but thought I'd leave it anyway!
Posted 7/19/2007 11:20 AM (GMT 0)
I take lyrica which was developed specifically for diabetic neuropathy. There are other meds used for nerve pain, most of them are anti-depressants you take at bedtime. My thoughts are with you.



Madlou
Posted 7/19/2007 3:03 PM (GMT 0)
I take 3, 300mg of neurontin a day and it does not make me tired.  It just took about 3 weeks to get used to it.  I take one and an ambien at night and still do not sleep through the night.  Guess we are all different.

Posted 7/19/2007 6:48 PM (GMT 0)
I have lots of pain-- i was too scared to try neurtin but i noticed that my klonopin (prescribeed initially for anxiety) eases it up -- my thoughts are with you too-- pain is so tough to deal with-- madlou are you having anymore luck with billberry?? 

i had a reiki treatment and cranio sacro adn reflexology they all helped more than the drugs

Posted 7/19/2007 8:27 PM (GMT 0)
Rhonda,

 

I spoke with my neuro on Monday and we are giving the Cymbalta 2 more weeks to see if it helps and the side effects go away.

 

I did ask if there is a supplement that might help with nerve pain and she knows of some neuros at Mayo Clinic who recommend lipoic acid.  I haven't finished researching it myself, but did see that it is used for diabetic neuropathy like Cymbalta and Neurontin, so you might want to ask your doctor about that. 

 

I still  have the burning nerve pain up and down myy spine, and some nights I lay on the bed and Becca (my 11 year old) will line up 4 of the icepacks that my Copaxone come with.  Not ideal though, the slightest move makes them tumble, but the cold does feel good.

 

Hope that helps.

 

Debbie

Posted 7/20/2007 1:39 AM (GMT 0)
I am taking the bilberry, two at a time about three times a day. I think it helps. My neuro suggested I take 5mg of baclofen twice during the day. It seems to help with the burning as well. I still take the lyrica, once when I get home from work and again at bedtime. I am also taking a number of vitamins and other supplements. I am also planning to start LDN because other MSers say it helps with symptoms.
Posted 7/20/2007 2:38 AM (GMT 0)

madlou,

Can you take LDN and an interferon at the same time?  Did your doctor approve it?  I heard that you could only take LDN if you were not on an interferon.  Just wondering.  Let me know.  Thanks lou.

love and prayers,

Posted 7/20/2007 12:33 PM (GMT 0)
Rhonda !

Hey there... The neurontin will only truly help if you are on it consistantly.  Your body needs to have an ample supply of neurontin in it's system at all times to keep the pain at a minimum or gone.  I am slowly working myself off the stuff to see exactly how much the abx and supplements are helping my symptoms, but I've been having more pain lately since I've just worked down to 600/day and then next week down to 300/day. 

For the neurontin to work for me, it was in my system for about 5 days, then I started seeing somewhat of a difference at 100mg/3x's day, stayed on that for about 2 weeks and then bumped up to 200mg/3x's day and then up to 300mg/3x's day about a week after that.  I could have gotten a tad higher although, I was starting to get a little sleeping on the 300mg/3x's day and decided to deal with it unless it got too bad.

I really didn't have any sleepiness side effects, but I wasn't taking it in conjunction with any other drugs either.  Could the cymbalta and neurontin be the culprit of making you so sleepy? 

Posted 7/20/2007 8:11 PM (GMT 0)
Rhonda
When I had constant trigeminal neuralgia my neuro put me on carbatrol because neurotin made me forget my own name. I also was advised by my chiropractor to take B complex vitamin to help neerves regenerate themselves. Both helped me tremendously. Good luck
Posted 7/20/2007 11:04 PM (GMT 0)
For questions on LDN go to www.LowDoseNaltrexone.org I am planning to ask my DO evaluate it for my use treatment. I have tried no other so will strart with fairly clean body except for Prozac 2 mo and antivert 2 mo Will try to remember to let you know what happens
Posted 7/22/2007 1:57 AM (GMT 0)
Hey Everyone

Thanks for u'r posts and help! I guess it's time to buckle under and just do what i'm being told! ;) My doc said the same...take the med AS PRESCRIBED and it'll help. I'm not too happy about the being sleepy and having to get used to that and the getting past it. I'm quite worried about how long that may take and being sleepy during the day. I'm supposed to take it at night, but i worry about the sleepy effect left over in the morn. I'll have to adjust my schedule to make sure i can sleep it off. So last night i took it late...slept til 11. Tonight i'll take it at 9. We'll see how this helps...i'm sure much better than it was. Thanks again everyone...if for nothing else but letting me just whine. ;)
Posted 7/24/2007 12:57 AM (GMT 0)
Whine all you want Rhonda!

I've been defeated by spasms, tremors and pain in my arms and legs! I'm going to have to bump back up to the normal dosage, this past weekend was pretty painful and today my tremors were absolutely horrible. They haven't been like this since I started on the 300mg/3X day. It does help, just gotta give it a chance. :o)
Posted 7/26/2007 1:36 AM (GMT 0)
Gretch, you're right about LDN and interferon. I stopped taking Rebif for a week, then started on copaxone primarily for that reason. It can be taken with LDN and histamine therapies. I'm hoping to combine traditional and alternative meds.
Posted 7/26/2007 1:41 AM (GMT 0)
Hey Denda!!

It's so good to see u!! Thanks for u'r support...thank u all for u'r support! I have been taking the Neurontin now for about a week a prescribed and its helping. Not nearly as much consistant pain and even a lull in the other achiness that's somewhat normal for me. Thanks again everyone...seems that just following instructions can mean so much...who'da thought!? ;)
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