Change in Meds?

    • Anonymous
      January 18, 2007 at 5:07 pm

      Hi Everyone,
      I was treated for GBS 16 months ago. For the first six months, I could see an improvement – able to use a walker, tie shoes, cut food, etc. You know those big things that we all used to take for granted before we got sick. I was in a lot of pain and had also relapsed 6 weeks after the first treatment. I had another round of IViG and in addition to Gabapentin, I was on low doses of Percocet for the first six months. The Percocet agreed with me quite well – no fatigue, actually I had a lot of energy, and no pain to the point that I was able to keep up with healthy active people. My doctor took me off Percocet and put me on Tramadol ( without Tylenol, as I was worried about long-term effects). I am currently taking 2400 mg of Gabapentin, 50 mg of Tramadol as needed, usually 3 of them a day and 20 mg of an anti-depressent at night.

      My question is that since November, I haven’t felt as good as I did in the fall and summer. I am more fatigued and have more nerve burning, muscle cramps, and skin sensitivity – the vibration of someone walking across the floor hurts. My neurologist doesn’t see me anymore ( since last June) and sent me to the hospital’s pain management doctor to handle my medications as he thought there was nothing more he could do for GBS. I have become more depressed in my frustration of not being able to work more than ten hours a week from home, or even have a semi productive day of errands. Being out for more than an hour tires me out and I start to loose coordination. Last week, I had to wait 3 hours to get new tires and when the car was ready, I had lost my small motor skills and had a difficult time signing the charge slip. I don’t know if a person can become immune to the effects of the medication and needs to switch to a differnt formulation, or if I need a higher dose. I read another thread about narcotic drugs and a lecture that a nurse gave about not being addicted to them if you don’t need to increase your dosage. Is anyone taking anything that works better than Gabapenitn and Tramadol? I would love to go back to taking one Percocet a day so I can have a pain free day and wind down as it wears off, but I doubt my doctor would be inclined.


    • Anonymous
      January 18, 2007 at 6:12 pm

      Hi Laura: I think you are suffering from residuals which no medication can deal with completely. Rest and more rest is the best medicine. However, I take neurontin (2400mg a day) and percocet as needed which takes care of most of the pain, but still need to rest a lot. If you find percocet better than what you are taking I would ask for it. Be patient with your working-I can’t work more than 13 hours a week and just need to accept that limitation for the moment. Hopefully you will find more energy but be patient and allow yourself to get through the day as best you can. Be loving and compassionate with yourself. Good luck. Jeff

    • Anonymous
      January 19, 2007 at 9:26 am


      I answered your email but after returning to the boards, from a little time off, I read your post and one more thing I would add is…..GET A NEW NUERO! You can take 3600 mg of Nuerontin per day (as I do) and theoretically up to 5200 mg per day.

      God Bless

    • Anonymous
      January 19, 2007 at 9:48 am

      I have found over the past 27 years that my residuals are much worse in the fall and then in the spring it clears again. Not sure if it is the same for all of us, but I know that for me, I have more sensitivity, muscle aches, less strength and lots of the zings. Neurontin this year helps tremendously. hope this helps!

    • Anonymous
      January 19, 2007 at 12:56 pm

      Perhaps Natalie is on to something here?? I no longer look forward to the winter months. I am always “determined” that I will do better this time [I]but[/I] inspite of all I try I’m always on a down-ward slide until spring arrives. For about 3 months we don’t see much sunshine, because of the fog, and I crave it! This winter I got a “light box” to use each day but it hasn’t made a difference. I did add a Vit. D supplement but perhaps not soon enough. Current medical literature supports Vit. D difficency in most auto-immune diseases. Wow, the challenges we experience 😮

      If there are those who do make it thru these months “OK”, please post if there is something you know makes the difference for you. Many thanks 🙂

    • Anonymous
      January 19, 2007 at 4:42 pm

      Laura, If the change is not helping and you already had good response from perc then tell your dr what you have noticed and get back on the treatment that worked well for you. don’t fool with a good thing! why did the dr change it in the first place? 1 perc a day is not overkill and not an addiction! go to a neuro who works for you not for the ins co or what others say. you are lucky if you had a good thing going, there are alot of us who can’t get the right combination or find the right combination to take the pain away. take charge of your health issues. it also sounds like you are doing too much and not getting enough you time, rest when your body tells you too. take care.