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On to Trileptal now

Shell74Shell74 Posts: 300
I started on 900 mg Neurontin for this darn nerve pain, it worked OK but I couldnt go higher to gain any benefit, I looked like I was drunk. My step son was asking me what the heck was wrong with me.

Next we tried Lyrica, this did nothing for me, although I didnt look like I was drunk, just a bit forgetful.

Today I was given Trileptal 600mg per day, and am slightly concerned about the side effects. Has anyone had really good luck with this when the others have failed?

My PM doctor, no longer wants to write me a script for pain meds, since I have been off LA since late September, he wants to try this first. Why cant I get 2 opinions that are the same, from these darn doctors. He also said I should have a cervical MRI but he wants to neurologist to write for it. The neurologist wants to do the EMG of the upper extremities first to try and narrow down the arm burning, he said no MRI since I dont have pain. I just dont know what to do. I have been trying to get to a bit of normal so that I can get back to work and taking care of my home but now I am ready to just give up on doctors all together and spend my days in bed.

The PM did say he feels the arm and chest burning like the areas on the legs is all related. Something about nerve messages being missread by the brain due to the damage. But he feels it is coming directly from the scar tissue area. OMG, I just want to scream.



  • I have used Trileptal in the past and found it ineffective for treating nerve pain. It also had some side effects that left the doctors scratching their heads in disbelief until they researched and found that X% of the population that use it had the same problem.

    Not sure what to say in regards to how your docs are trying to chase down your problems. I hope they figure it out soon.

  • Thanks C, I am willing to give just about anything a try. I just worry about the med messing with my blood pressure meds, I cant afford that, it is hard enough to keep that under control so as it is,lol.
  • You might eventually need to go to a clinic where your problems will be evaluated by a team of doctors from various specialties who work together to come up with a diagnosis. They do this at the Mayo Clinic, but I imagine there are other places where you can get this approach.

    It strikes me that PM docs are in a strange place. Sometimes they are in charge of a patient. Other times they are doing procedures that are ordered by other doctors. I think this has an effect on how they go about sharing information with the patient.

    I would encourage you to get the EMG. If the guy performing and interpreting it is good, it can provide a lot of good information.

    I know you are frustrated. I am going through something similar and it just seems neverending! It would be nice if we were like cars and they could just plug us into a machine and get a print-out to see which circuit needs a new part, etc.
  • I had the EMG's this morning and am in lots of cramping pain, not the procedure itself but after the needles were removed it started and hasnt stopped, OUCH.

    The upper extremities showed no significant changes from the test done 6 years ago. He did the lowers as well, that showed damage to the S1 on the left side, of course this wasnt a surprise to either of us, since I have the scar tissue surrounding the nerve. Nothing showed in any of the areas related to where I have burning and cramping. He wants me to see a rhumatologist to discuss CRPS and Fibro, as possibilities in addition to the damage from he scar tissue that is causing pain.

    OK, so now I will wait to see yet another doctor,lol.

    Thanks for everyones comments,
  • Well, at least you have something that adds up!! None of my stuff matches up at all!
  • I am not sure what it adds up to in the long run. Pretty much, everything I do will make something else hurt. The neurologist said on the good side, the treatment for all of these dx. is pretty much the same.

    Gwennie, I hope that they figure something out for you, this constant state of not knowing which way you are heading is for the birds.

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