• Anonymous
      August 29, 2008 at 12:24 pm

      I know this topic has been discussed quite a bit and quite recently, but I need some help thinking about the pros and cons of this pain medication. I recently was put on Nerontin to help with toleratilng the new mouth appliance made to help me with the sleep apnea and to help control my severe RLS. It made sense when I discussed it with my GP because it acts specifically on the lower trunk of the CNS. And anything to help me calm down as I lay there with this apperatus in my mouth sounded good. But my concerns are-A) the weakness and fatigue which feel similar to a CIDP flare up, B) the depressive mood and irratabiliy I am experiencing, and C) the possibility of my respiration being further depressed at night time, all of which seem contradictory to the goal of treatment for the CIDP. Does this make any sense to anyone? Of course I will discuss this with my doctor(s) but I like to check with those of you who have first hand experience. Thanks.

    • Anonymous
      August 29, 2008 at 2:57 pm

      Hi Linda: I have sleep apnea and use a cpap machine and am on 4800mgs of neurontin as well as oxycontin and have noticed no trouble with respiration at all, and no noticable increase in fatigue. Whatever sideaffects you might have should diminish in time. I know some people complain of fatigue with neurontin but I have been on it for four years without problems. I was on it for RLS before GBS as well. One of the few benefits of GBS is that it cured my RLS. Jeff

    • Anonymous
      August 31, 2008 at 7:41 pm

      Thanks Jeff,
      That is encouraging and promising. Cureing one thing while treating another would be a real boon!!! I hope you continue to enjoy great benefits. Thanks again.

    • Anonymous
      September 1, 2008 at 5:35 pm

      Hi Linda, Neurontin and Gabapentin are the same med, anti seizure med. They will not depress your system, it just works well on nerve pain. As for perscribing it to help you calm down, it isn’t an anti depressant, it might make you drowsy, and it might not-it acts differently on everybody. Some of the fatigue you have can be blamed on the lack of a restful sleep, it really does take a toll on the body, apnea is a major problem as far as that is concerned. I have it really bad, and I never had it prior to gbs/cidp. My hubby had it, cpap and all until he had the surgery a couple yrs ago-cured him really well. Now I’m the one who wakes him up!!:D My hubby has rls and controls it with requip, he uses my gaba only when he runs out of his script-gaba doesn’t help him anything like requip does.
      Hope you can find something that helps you tolerate the mask, sleep is the most important thing one can do to help an illness. Take care.

    • Anonymous
      September 4, 2008 at 4:07 pm

      Thanks Cheryl,
      I am finding the Neurontin is somewhat helpful for tolerating the new mouth appliance and the mouth appliance is actually helping me breathe better! I was just concerned with feeling a bit edgy and depressed but as you pointed out, lack of good sleep can do that too. I think it’s just another case of “give it time”. The next sleep study will tell if everything is working. Thanks again for all your care and input everyone.

    • Anonymous
      September 4, 2008 at 5:31 pm

      Hi Linda,
      I have a bi-pap machine, which is the next step up from a c-pap machine.
      A bi-pap is for use around-the-clock when needed, and has some extra “gismos” on it to control the breathing.
      My CIDP attacked my autonomic system, and hit my phrenic nerve, and now have very shallow breathing. In times of dire need, usually when it gets too hot or over-fatigued, I need to use the bi-pap. The worst part was getting use to sleeping with the mask on my face, but my body got use to it over time. The great fatigue helped with that.
      But I have been on Neurontin 3600 mg for years now, and has helped me greatly. I remember the “electric shocks” I used to get in my spine before I was on the Neurontin, and don’t have anymore. I am also on Valium and Flexeril for severe muscle spasms. And Vicodin and Marinol, (the pill form of pot), for pain/nausea/to increase appetite. But I am in late-stage of progression of CIDP, with slow deterioration, as the protocol for CIDP is not working for me, and I am on Chemotherapy as they try to put it into remission.
      But, the doctors had to take into account, the shallow breathing, (in your case, sleep apnea), versus the various drugs used on my body that also have a side-effect of possibly adding to the shallow breathing. The end result was that they wanted me to be the most comfortable, and I believe the meds helped me get used to sleeping with a mask on my face either during the day or night. The bi-pap, (in your case the c-pap), will do it’s job of making you breathe.
      As someone already mentioned, I think your irritability is coming from lack of sleep.
      It is a weird sensation having the mask on your face, and sometimes when I had to wear it for a couple days straight around-the-clock, I would sometimes get an irritation on my face around when the edges of the mask were against the skin on my face. So, now and then, use a skin moisturizer/lotion to help against that.
      The funniest thing is when you look in the mirror with the mask on, and it looks like you are a “Top-Gun” jet pilot…