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Neurontin for nerve pain

Shell74Shell74 Posts: 300
For 2 weeks I have been taking Neurontin for the nerve pain in my legs, caused by extensive scar tissue posterier to the cord and surrounding the S1 nerve route. This may sound silly but if you are taking meds like this, how can you really tell if things are getting better or worse?

Thanks all,


  • dilaurodilauro ConnecticutPosts: 9,846
    this one... Its one thing to figure out if ALL the medication you take helps you manage your situation. Then there is another approach to determine if a specific medication (ie Neurontin) is doing what it is suppose to do.

    The unsafe way to do this is to stop taking one of the medications for a while and write down your results.
    Doing it that medication by medication would provide you with this information

    BUT this is ALSO a very dangerous thing to do. You can not just stop taking a medication without a doctors approval.

    Last year I had a strange rash that lasted for over 3 months.
    The dermatologist I was seeing took biopsy after biopsy, but never got to the bottom. It wasn't until I saw my PCP and he worked out a plan to eliminate one medication at a time. Doing that we find the problem (Requip for Restless Leg Syndrome) was creating the rash.

    The other safer way is to realize how you feel when you do take a medication like Neurontin. For me , my legs will start to go numb and shake a bit during the course of a day, after taking my scheduled Neurontin, that goes a way for a while.
    So, in that aspect, I know that Neurontin is helping me
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I really think that the Neurontin is helping alot, I have had a decrease in tingling and pain from the waist to the toes. Yesterday I slept in and missed my morning dose, took my midday and then fell alseep early and didnt take my evening dose. This is the first time I have missed. This morning I woke up and am a mess. Pretty much tingling, burning, shaking and cramping from the waist down to the tips of my toes.

    What I really wanted to know is how do you know if the actual nerve compression and irritation is getting worse or better when you are taking meds to rid the symptoms? It just seems to me if we are trying to prevent permanant damage, blocking the symptoms cant give me the oppurtunity to effectively monitor whats going on. Maybe I am wrong, I dont know.


  • dilaurodilauro ConnecticutPosts: 9,846
    the problem.
    To an extent this is true with pain medications as well as other medications for nerve and muscle problems.
    One of the objectives in taking various medication is to help you reduce and/or eliminate the problem that is causing that pain.
    Taking the various medications will hopefully allow you body some time to start the healing process. When you are in lots of pain, nerve pain tingling all over, it is very difficult to even think about getting better.
    So when you are taking the various medications, this should provide your body with time to heal.
    Now that is true assuming that the origination of your problem is also being addressed. Thats why I feel so strongly about the total blend. Mixing medications with approved treatments will help.
    Nerve problems are very difficult to address. Two reasons:
    1 - The source of the problem needs to be eliminated, so many times that means the impinging of a nerve root from a disc has to be corrected. That can be done via surgery or other conserative treatments

    2 - When there is impingement or other immediate problem, but instead some damaged nerve roots. Those are the more difficult to resolve. Medications in this case help to make you comfortable, but in my opinion, I do not believe that the use of nerve medication here is going to fix the nerve problem. Many times, its just waiting it out

    Hope I made some sense out of this
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • It does make alot of sense and makes me feel a bit better. This seems to be the predicament I am in. I could totally mask the issue with nerve meds and pain meds, but unfortunetely unless the scar tissue surrounding the nerve magically disappears I am stuck for now, hopeing that it will remodel in a less irritating way. I just hate to sit and wait while things get worse right under my nose. I feel like I should be doing something, I am being followed by and OS, PM and am waiting for a NS consult, so I am not doing nothing, everything is just so frustrating.

    Thanks a bunch,
  • Are the doctors going to do surgery to remove the scar tissue around the nerves? I would think scar tissue doesn't just disappear on its own.

    Sitting and waiting on doctors is the most frustrating thing to do! If only there was a magic pill to take to make unwanted things go away! Well Neurontin is my magic pill, at least to make my low back and leg pain to go away so I can walk.

    I can tell my nerve pain is getting worse by the way I feel an hour or two before my next dosage is due. If you are staring at the clock waiting for the next dosage, I would say your nerve pain is worse. If you forget a dose and have no pain then I would say your nerves are getting better.

    God Bless

  • Hi, I Take neurontin. It is one of my pills I would not wanna be without.
    I take a high dose 2700mgs, and I take my pills four times a day instead 3 like most it works better for me and I think other should suggest talking with Mr. Doc about taking meds four times a day, (just a suggestion)
    My surgery was feb4th and I still take same amount. in about 3 weeks we will travel back to surgeon and prolly discuss trying to lower it very little at a time they said like one pill maybe a week.
    I know my neuontin works!!!!about 30 minutes before its time to take it my arm and leg or legs tell me
    I can tell the difference between nerve pain... and pain.
    We where hoping my arm would be better after surgery but it was not.My R arm is part paralyzed sometimes all and I usually type left handed (not excuse ) some days It is really bad and I wanna tear it of.
    My legs, Doc said right from the start he was not sure about my legs well they are not better. I walked in Madison hospital using my Cane and left using walker and 3 weeks later still have to use walker and at times with help.
    I DO NOT like this walker AT ALL and I want my Cane back but legs are weak and balance is cruddy.
    As for my surgery.... piece of cake.scar is not so bad and I can still turn my head some. I do wear my soft brace when neck gets heavy, or riding in car or up trying to walk I think I'm pretty sure I need more done above c6-7. but at least they got the worst fixed, Doc said that disc was far into cord.He also said he has never seen such a sick cord before and I have to be patient they also say it can take along time for improvements to show up, so this Grandma is hanging on to that. its hard almost every day. specially because im 45 and not 25.
    oh i go on and on and i can do that good.

    I still Miss Ben alot He is in my every thought when I get on computer. We would talk every morning and he would always listen and give me advice and help. no one will ever know what that man did for this Lady and got me through.

    So I have finally quit asking God Why--1 (my own precious Daddy, sweetest man to live that I know passed away on thanksgiving day)--2-I Loved my Job I did for 20 years taking care of patients with the most Care and loving i swear I wanted to be everywhere working making sure them mean nurses new they better be nice I loved taking care of handicap. (i could go on)Now I have people taking care of me. go figure. You wanna ask why.. not fair. and I have a right to be upset. I stayed 2 nights in hosp they wanted 3 but I got the heck out of there. nights are bad. most nurses are not nice usually night time,(and i always well usually worked nights so I know from two sides ) some are sweett love there jobs AND God bless them. the poor people who cant speak up. I should of known. I will never stay all night in room by myself(my hubby and son stayed in motel)I had one nurse speaking so rude and being rough to me. SO on my cell phone I recorded it and it was pitiful. 2 minutes after they find out she is gone and i got a nice nurse. I scared they pooh pooh out of her after I let her listen to her being mean to me.(God maybe it will make her be nicer from now on)and many others at hosp heard it too. after 3 years I finally have a Doc that is helping me Thank God for him. --3I never got to tell or talk to Ben about my surgery and I miss that I miss him and I will never forget cause he saved me more than one time he kept me strong when I was weak and I cry all the time because I miss him. sorry I have gone on like this when we where just talking about our meds I just get very emotional alot I blame it on the pills'
    ALSO I miss Paul he must be in some awful pain and sum times I think I feel his pain. I hope he is getting better everyday but I miss hearing from or about how things went for him. Oh I will stop... love and hope all in pain some piece. of mind and a relief from there pain.
    Hey Shell thumbs up for neurontin. that's what I wanted to say.

    Ron... my Boss. I think you are okay.. I don't care what they say about you.( ha ha just joking I think your the best boss I have ever had)
  • ladybug, thank you for sharing. It is so difficult for those of who are young and worked in the healthcare field helping others. The role reversal is very upsetting at times. I am sorry for all of the troubles you are having, I am glad you have found a safe environment here to share you experiences, they are greatly appreciated.

    Countrygram, I am early out from fusion surgery (6 months and a few days) and the MRI 2 weeks ago is what stated the extensive epidural fibrosis posterior to the cord and surrounding the nerve root. I was good till 3 months ago, when it started. My PM and PT feel the scar tissue is a big issue and needs to be taken care of quickly, while the OS feels we should wait and see what developes. He doesnt feel scar tissue causes pain. Since I missed my dose last night I am in agony here, the meds dont seem to have caught up with me yet. I would guess that means the compression and irritation is still here and not improving, actually feels worse than before.

    Zachback did have surgery to remove scar tissue, I am curious to here what he has to say. I am going to see a NS in Philly the end of this month, maybe they will have a suggestion. We will see.

    Thanks all,
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