Just started Neurontin – I have some issues

    • Anonymous
      January 20, 2007 at 11:19 pm

      I have had this crap (CIDP) since Sept of 04. I have had my ups and downs but have been off work due to fatigue since March of 05. Over the last few months, the tingling/numbness/pain/feeling of intense heat have slowly worsened.

      I started taking Neurontin a little over a week ago. Shortly after I started, I noticed the the symptoms had changed, maybe not better, but they changed. Particularly the tingling seemed to intensify and change from just tingling to a feeling of needles in the skin. This change was not as noticeable in my legs, but boy howdy, was it ever noticeable in my arms and across my face and chest.

      Tonight when I took my evening pill, the feeling hit within 15 or so minutes and was very intense. Maybe not enough to try to call for a medical opinion on a Sat night, but it got my attention.

      Now for the question. Have any of you noticed an increase of the tingling on Neurontin? This stuff may not work for me, because it sure is uncomfortable. This stuff is supposed to help not make it worse.

      Thanks for any input that you might have.

      Hutch

    • Anonymous
      January 21, 2007 at 9:19 am

      I was on Neurontin/Gabapentin and all I experience was more tiredness from the medication.
      Have you looked at the list of side affects that the drug has? Maybe you are having an allergic reaction to it? I would consider discontinuing the drug till you talked to your DR.
      I was taking the medication for the pain from my nerve biopsy. My case of CIDP is mild so I can’t help you much but hopefully others will post.

      Take Care
      Sue

    • Anonymous
      January 21, 2007 at 10:47 am

      I have been on Neurontin/Gabapentin for about two months. For the first few weeks I felt very tired. Now I still feel tired but not as much. I have also noticed a problem with short term memory. Of course that could be my age.

      I have noticed that there are some posting that have said that Neurontin/Gabapentin did not work for them.

      I would suggest talking your side effect with your doctor.

    • Anonymous
      January 21, 2007 at 1:48 pm

      Hutch,

      I have spoken to a couple of people who have had adverse reactions to Neurontin. There is one lady in particular who’s pain seemed to get worse from and she really was suffering. After she called her doctor, she was told that she should just keep taking it and see what happens. Long story short, after speaking with her over the phone and several others who are on it, she decided to stop because she really was horribly uncomfortable. Each day her ‘effects’ lessened until she was at the point she had been before starting it. Her doctor then said that she probably did the right thing ……. :rolleyes: Just as Jim said, some people do have negative reactions to certain meds. Its easy for someone not going through what you are at the momemt to give advice, but I have learned that my body will tell me what is good or bad. Speaking to those who Neurontin has helped, many of them have had some relief from the beginning.

    • Anonymous
      January 21, 2007 at 2:16 pm

      Dear Hutchman!

      How much Neurontin are you on? You said “my evening pill” – how much is that and how often do you take one? Since you have been on the medication for such a short time, I think you should give it some more weeks before you decide whether it helps the way it’s supposed to or not – unless of course you get very uncomfortable very fast. If so, see you dr. about it asap.

      Good luck!

    • Anonymous
      January 21, 2007 at 4:30 pm

      Neurontin should not be abruptly stopped, one must taper of of it. If the Dr says to stop asap then do it.

      There are other meds to try. If it is making you worse then get off of it and have your Dr prescribe something else.

    • Anonymous
      January 21, 2007 at 5:20 pm

      I have been on neurontin since April of 2002. I initially took 3600 mg for the first 4 months, then tapered down on my own within the next 6 months to 1800, & have remained on that dosage since then. I could not function without it, as my feet would be too terrible to bear the pain. At times I wonder if it contributes to my fatigue, but I am too afraid to try anything new. Maybe it does not work for everyone.

    • Anonymous
      January 21, 2007 at 9:34 pm

      I have taken 2400mg of Neurontin each day since 2003,and also couldn’t get by without it.It has also affected my short-term memory some,but no major problems.Drugs have different reactions for each individual,so if you continue to have problems,or if the problems you’re having worsen or don’t improve,I’d call the Dr. Take good care!

    • Anonymous
      January 22, 2007 at 12:33 am

      Seems like I don’t do very goog on a lot of medicaitons.

      At this point I am only taking 600 mg total each day, one in the AM and one in the PM. I have taken both today and have notice that about 15 – 20 minutes following each dose that I get an increase in the severity of the tingling. It tapers off for a while until the tingling returns to the normal level, but it hasn’t seeme to make it go away yet. We’ll see I guess……

      Thanks for all the replies.

      Hutch

    • Anonymous
      January 22, 2007 at 10:47 am

      This sounds like an unusual reaction to the med ~ atleast for most of us. Talk to your doc but also the Pharmacist. He is usually more “versed” in side effects.

      I am sorry that you haven’t found a med that “makes the difference” for you. I often wonder if some things I deal with are side effects but, like Pam, I’m to afraid to try something else. I have a terrible history of med reactions 🙁

    • Anonymous
      January 22, 2007 at 11:41 am

      I am new to this website and I would appreciate if someone could explain how neurontin affects cidp.

      LJH

    • Anonymous
      January 22, 2007 at 1:36 pm

      Welcome to the family LJH. Neurontin(Gabapentin) is used to help alleviate/control the Neuropathic pain that comes from CIDP. Lyrica is a newer drug that is also used.

      Jerimy

    • January 23, 2007 at 8:01 am

      I also had problems with Neurontin and my dr switch me to Lyrica. Have been on it for a couple of months. The only problem I had with the Lyrica was some balance problems but once we got the dose down a bit all else has been fine. It all comes down to working with your dr to find the meds that work best for you. Good luck!

    • Anonymous
      January 25, 2007 at 11:14 pm

      After another week, the severe tingling has gotten better, as has the overall tingling. The periodic pain that I had also has seemed to improved. It seems kind of interesting though, the tingling has not disappeared, just changed. The effect overall is less than before, but just not gone.

      The severe fatigue that has gone along with the tingling over the last couple of years has not improved. Neither has the numbness.

      I guess you win some and you lose some. I’ll take the improvement in the tingling!

      Thanks for all the replies!

      Hutch

    • Anonymous
      January 26, 2007 at 4:15 pm

      hey hutch, i have the same increase in tingles after taking a dose.you need to see if increasing the dose will help-it worked for me-i now take 600 in the a.m. and afternoon and 900 at bedtime. take care.