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Neurotin not working - thoracic and lumbar burn/ache

firewater1981ffirewater1981 Posts: 84
edited 06/11/2012 - 8:50 AM in Chronic Pain
In my most recent blog you will see that my pain managment denied me vicoden and prescribed me nuerotin. Last night was rough. Very rough. Ive been pretty much staying laying in bed the past couple of weeks but I need to get out every now and then to buy groceries. Yesterday I bought groceries and got a new phone (mine was falling apart) I am single, live alone, and have no family in the state of Texas so I have to manage my needs by myself. Im very independent so that is ok with me.

The problem is after doing just that small amount of stuff last night was absolutely hell for me and my back. I took the nuerotin and it didnt do much of anything. A bit later I took celebrex and that honestly helped the most (it usually does) then I took tramodol to take the remainder off. It helped too but I still had breakthrough pain.

Most of my pain is actaully in the thoracic and its not really pain at all. Its more like extreame ache and burn. Its like someone has a blowtorch and running along certain parts of my spine and keeping it there. I think because I have 3 Degenerative discs there. My thoracic acts up and so does my lumbar. Dont get me wrong I have sciatic pain but its usually relatively mild (compared to what some of you guys have and the sciatic pain you explain). Mild twitching, mild electric shock, mild tingling, mild muscle weakness. Like I said its usually burn/ache though, which someone would think is not that bad compared to pain. Well it is! It gets so bad sometimes I think my mind is shutting down.

Both my thoracic and lumbar areas were out of control last night. Right now thank God the nerves or something is still asleep because its not that bad. Sometimes Ill wake up and it hurts and there are times I toss and turn but after a good sleep the nerves/discs are relatively mild.

What do you guys recommend for medication for severe ache/burning? I know you are not doctors but I need to find another pain management clinic and ask them about stuff. Not just get handed somethinig without the doc explaining what it does like last time. My mom said Lyrica. Would that work or is it similar to Neurotin? Does the Neurotin take a while to work (over days)? Thanks in advance.


  • I don't know how much advice I can give, but can tell you my experience with the Lyrica compared to the neurontin. My neurologist first prescribed Lyrica, so I gave it a go for a few weeks, but for me, after a few weeks, I called my dr and told him, I couldn't do the Lyrica and to change my prescrip to the neurontin, due to the fact that the Lyrica had started my anxiety attacks again, and was making my depression worse. But now these are also things that I have dealt with for years, so it wasn't a new thing. Once I got the neurontin in my system, it did help, tho not completely. Of course usually the dr will start you on a smaller dose to start with and adjust the dosage from there. I first started with taking it 2 times a day, and had to eventually increase it to 3 times a day. Of course I do take other meds along with this, but just wanted to cover my experience with the neurontin. I can totally relate and understand what you are talking about with the burning and such and not sleeping good. I hope you find an answer soon.
  • From what I understand neurontin needs to build up in your system. You just started this right? It may take a little while for you to feel better from it. Are you on a small dose, and working up to a bigger one? That can also make a difference. My Dr has me on 900mg per day. The bedtime dose I am supposed to "stack" (his words) and space them 15 minutes apart. He said that he went to a confrence on fibro and it is supposed to help. Mind you, I have no DX of fibro, he just keeps bringing it up.

    Anyways, when I first started on neurontin all my DR said was 900mg/day and stack the last dose. When I saw the pharmasist she asked if he told me to start out slow, and work up to that dose. When I said that he hadn't, she said to start at 200mg at night, wait until I was ok with that and slowly move up. I really appreciated her saying that. It tok me 2 months to get there. When I tried Lyrica all that was available here was the 75mg pills, and I was told to take 2x per day. I still (barely) work full time, and I couldn't take the side effects. I stopped in the first couple weeks. With working up to this dose of the neurontin I don't have the brain fog near as bad, and when I got to 700mg the pain did get better. Not gone, but at least better.

    Give it time, it may help the nerve pain, if not there are other options. The ones that I can think of are Lyrica, Cymbalta, and topomax (I'm sure I spelled all of those wrong-shouldn't post after taking a sleeping pill). I am sure that there are more.
  • I took Neurontin for over 1 month. I had instructions on how to take it and gradually work up to the dose that works for your pain. I was eventually at max dose, i think it was 25 hundred. Problem was that even at this dose it did not work and side effects were dangerous for me. I was forgetting things (living things on, etc) and falling asleep instantly while driving on the freeway. However i have heard from few people that it would work better for them than Lyrica and that everyone is different when it comes to Neurontin. As far as thoracic pain goes, If Vicodin helps than you should use that or other opioid if you need more pain relief. Thoracic pain can be hell on earth, i would think you need more than Vicodin to be able to sleep (at night). Could you find another PM doctor, it's kind of cruel to switch your medications the way they did. Hope you feel better soon.
  • From what my doc told me, neurontin either works or it doesn’t. Works very well for some and not at all for others. I know the burn you are talking about – I have that too, but like you said, you are flip flopped from me. I can live with that, but not the sciatic BS. That drives me insane! Anyway, I agree with the above poster, “if” vicoden works for you – then go to a new doc and tell them that. There is also Percocet and lortab that are in the same family. I flip flop between those too when I feel I build up some tolerance. Some people get groggy or weird feeling with those, I don’t. They allow me to be down to a 2 or 3 level all of the time and go to work, and take care of the animals on my little farm, and really enjoy at least “a few” of the things I used to not even think about doing. You really need to see a new doc, take you info from the pharmacy showing what you had before and tell them that 15 lousy pills in 5 months doesn’t cut the cookie. You are miserable, and life sucks! Tell them the way it is. I know I would NOT be still on this earth had I not found a doctor to take care of me because that is NO life. Might as well be 6 foot under in my mind – so do yourself a favor and go find someone who will help you instead of insult you and imply you’re a druggie or worse. Nobody deserves that BS! Take care bud - Marion
  • Firewater I would give it a few days. I have thoracic and took Neurontin very successfully for many months. It does work well but can take a few days to adjust to. It takes a few days also to get used to the side affects of sleepyness and the fog. You may need a higher dose. Are you scheduled to call your PM doc in the next few days? When ever I change a med I have to call my neurologist once a week if not sooner. Often we adjust the dosage that way.

    Another reason for giving it a chance is to show the doctor that you are willing to try things. I said I used to take neuronting, now I'm on Lyrica and probably changing again soon. It's not easy to find something that covers the thoracic nerve pain without major side effects. I choose not to live my life under the effects of narcotics or in a perpetual fog. So the quest continues.
  • My Dr (PMD) Told me that Lyrica and Neurontin were like sister or cousin drugs, and that if one did not work for me that the other one "probably" would not be good for me either. Of course, this was after I had a bad reaction to the 50mg Lyrica (the lowest dose in sample form).

    It makes no sense to me that a person takes a low dose of a medication, has a bad reaction, but suffers through it because "that is normal." If your body is rejecting something and making you feel poorly, it is not good for you. Brainwashing a person into thinking that it's only temporary until you adjust is just that..brainwashing. If the medication were good for you it would not take weeks or months to help--but this is only my opinion.

    I think it would be optimal to take nothing for pain if I/or whoever had no pain, but because I do suffer with chronic pain from the time I wake up until the time I am in REM (and I'm not measuring my pain against anyone elses, but my pain is my own and it is bad), I choose to take the most natural pain reliever and that would be an opiate. I didn't always feel this way and actually used to be prejudiced against those who took "painkillers", either recreational use or even for pain. I was of the opinion that a person should only take opiates after surgery (recovery) or during acute pain episodes and certain diseases(broken bone, sprain, illness, cancer, etc.). It wasn't until I had side effects from medication that made me sicker than my disease(s), research, my own CP, self medicating with alcohol, and many of my lifes experiences, did I come to the simple conclusion that pain, and my pain in general, should be treated with the safest (& most natural)pain medication at my disposal. Everyone is different and have to do what is best for them with the help of their Dr(s), but please research the medications your Drs Rx for you because some medications really are worse for us than what is causing our pain in the first place. Opiates are given a bad rap because so many people abuse and mis-use them, but for the CP patient who takes them as prescribed and to allieviate some of their pain, they honestly can be a life saver. Not one single member of my family knows that I take these pain medications, so it doesn't have to be a big deal.
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