Nuerontin

pamysue
pamysue Member Posts: 105
edited March 2014 in Colorectal Cancer #1
Is anybody else taking this for nueropathy? My doctor started me on one pill at bedtime. A month later, I'm taking 2 300mg pills 3 times a day. It's made my insomnia worse and I just don't feel right. I would say the pain in my hands is about 25% less than it was. However, I now have the pins & needles effect in my hands most of the time. My feet are the same.

Just curious if anyone else has experience with this treatment. My chemo nurse said he has seen great results with it. Everything I have found online says it is used to treat sezuires or diabetic nerve damage. Even some information on use for meth withdrawal. Weird.

Comments

  • Faith88
    Faith88 Member Posts: 55
    #2
    neuropathy and neurontin
    Hi Pamy
    my hubby has been taking this for over a year now for his nerve damage. It's one of the drugs most prescribed along with Lyrica for neuropathy. it's helped him a lot with the pain and the last few months he's been trying to wean himself of it since he has liver damage and any drug is not good for the liver. He says it helps about 50% for the most part with the pain, but he still gets pins and needles. Hopefully, you'll be able to find a dosage that helps you and can find some relief over time.
    There's also supplements and vitamins you might want to look into, like calcium, vitamin Bs
    and Alpha lipoic acid. Lots of suggestions but nerve damage is a tricky one to deal with..
    best wishes to you.
    Faith88
  • kmygil
    kmygil Member Posts: 876 Member
    #3
    Neurontin
    Hi Pamysue,

    I am 2 years out of chemo and I still take Neurontin, 100 mg 3 x daily. Time took care of a lot of the neuropathy, but I have remaindered neuropathy in my feet, especially the bottoms. It is no longer painful--just numb, but if I don't take the Neurontin, the pins & needles come back, the sensations start travelling back up my legs and finally degenerates into pain. So I take it as a maintenance medication now to keep it at just numbness on the feet bottoms.

    The funny thing is that the neuropathy got worse after finishing chemo. For about 4 months it just got worse & worse, then it started to abate. I guess that saying about things getting worse before they get better is true:) But hang in there. It WILL abate, and the Neurontin will definitely help.

    Hugs,
    Kirsten
  • kmygil
    kmygil Member Posts: 876 Member
    #4
    PS:
    PS: I also take large doses of Vitamin B complex to help the neuropathy, too.

    Kirsten
  • pamysue
    pamysue Member Posts: 105
    #5
    Glad to hear
    it's not just me on this. I was shocked when I searched the board for the word and got no matches. I'm not quite 3 months off chemo, so maybe the pins & needles starting is just the natural progression of suckiness and not from the drug. Just coincidence. I do hate to read that a year and 2 years later the effects are still hanging on. I'm so impatient right now. I think this drug may have something to do with it. I feel more depressed now than I have since I was first diagnosed. And not just that. I just feel funky in my head. My insomnia is worse even though the doc said this drug would "knock me out". I take it with xanax at night and still can't sleep. My onc nurse will be back from his cruise next week. I'll get with him then and see what he says.

    Thanks for listening (reading).
    Pam

    Oh and I almost forgot. I have been doing the B complex since the end of chemo and also lots of D to help with recurrance. (sp?) And added a big ol multivitamin to my morning too. My kidneys are wasting... so I'm still having to take Potassium and get IV Mag some weeks. But yes, taking the vitamins and we can't remind people enough to try the natural approach. I really think the beach would cure most of my problems.
  • Shayenne
    Shayenne Member Posts: 2,342
    #6
    pamysue said:

    Glad to hear
    it's not just me on this. I was shocked when I searched the board for the word and got no matches. I'm not quite 3 months off chemo, so maybe the pins & needles starting is just the natural progression of suckiness and not from the drug. Just coincidence. I do hate to read that a year and 2 years later the effects are still hanging on. I'm so impatient right now. I think this drug may have something to do with it. I feel more depressed now than I have since I was first diagnosed. And not just that. I just feel funky in my head. My insomnia is worse even though the doc said this drug would "knock me out". I take it with xanax at night and still can't sleep. My onc nurse will be back from his cruise next week. I'll get with him then and see what he says.

    Thanks for listening (reading).
    Pam

    Oh and I almost forgot. I have been doing the B complex since the end of chemo and also lots of D to help with recurrance. (sp?) And added a big ol multivitamin to my morning too. My kidneys are wasting... so I'm still having to take Potassium and get IV Mag some weeks. But yes, taking the vitamins and we can't remind people enough to try the natural approach. I really think the beach would cure most of my problems.

    maybe...
    ....that's why they been giving me a Bag IV of Vitamin B-12 with my hour drip of Irintocen or is it leucovorin part of the infusion, to help cut down on my chances of getting neuropathy?? I asked her if I should be taking any kinds of vitamins, and she told me not to take herbal supplements since most counteract the chemo, but I can take a multi-vitamin.
  • kmygil
    kmygil Member Posts: 876 Member
    #7
    pamysue said:

    Glad to hear
    it's not just me on this. I was shocked when I searched the board for the word and got no matches. I'm not quite 3 months off chemo, so maybe the pins & needles starting is just the natural progression of suckiness and not from the drug. Just coincidence. I do hate to read that a year and 2 years later the effects are still hanging on. I'm so impatient right now. I think this drug may have something to do with it. I feel more depressed now than I have since I was first diagnosed. And not just that. I just feel funky in my head. My insomnia is worse even though the doc said this drug would "knock me out". I take it with xanax at night and still can't sleep. My onc nurse will be back from his cruise next week. I'll get with him then and see what he says.

    Thanks for listening (reading).
    Pam

    Oh and I almost forgot. I have been doing the B complex since the end of chemo and also lots of D to help with recurrance. (sp?) And added a big ol multivitamin to my morning too. My kidneys are wasting... so I'm still having to take Potassium and get IV Mag some weeks. But yes, taking the vitamins and we can't remind people enough to try the natural approach. I really think the beach would cure most of my problems.

    The saw about time....
    Yes, Pamysue, the old saw about time healing all wounds is pretty close; it will take time, but hang in there. Depression is common after stopping chemo--you sort of feel like you aren't actively fighting it when you're no longer taking the drugs, and you get afraid that it will come back if you aren't. Things will get better, but don't be afraid of taking or upping antidepressants. You can't heal well if you're in the dumps. Our bodies take a lot of their cues from the mind and spirit. Keep them healthy and your body will respond.

    Hugs,
    Kirsten
  • kmygil
    kmygil Member Posts: 876 Member
    #8
    Shayenne said:

    maybe...
    ....that's why they been giving me a Bag IV of Vitamin B-12 with my hour drip of Irintocen or is it leucovorin part of the infusion, to help cut down on my chances of getting neuropathy?? I asked her if I should be taking any kinds of vitamins, and she told me not to take herbal supplements since most counteract the chemo, but I can take a multi-vitamin.

    B-12 Drip
    Hey Shayenne,

    I've been following your posts with great interest. You are a fighter and a questioner--all good things to be when battling the beast! I personally did not get Irintocen; it was the oxaliplatin which caused the neuropathy in my case. Leucovorin is actually a booster--it enhances the effects of 5FU. Since the 5FU has such a short effective time, the leucovorin sort of boosts its effects while it is active in your system. At least that is how it was explained to me.

    You are right about the herbal supplements. I was encouraged to take a multivitamin, but asked to stop the other supplements I was taking during chemo. After chemo, I was told I could resume the supplements.

    Unfortunately, since I was already in perimenopause, the chemo threw me right into full menopause. Then 4 months after stopping chemo I was dx'd with endometrial cancer and had a full hysterectomy. That entire combo caused severe osteopenia, bordering on osteoporosis. So now I also take extra calcium/magnesium, Vitamin D, the B-complex and glucosamine. However, I did not take anything except a multi during chemo.

    In my onc's office there was a big poster about not taking Vitamin C during chemo as it could actually counter certain drugs. I BELIEVE that it was mainly the drugs for breast cancer that Vitamin C counteracted, but I just played it safe.

    Hey, I'm rambling again (one of my many faults.) Didn't mean to. Anyway, take care and know that all of you are in my prayers.

    Hugs,
    Kirsten
  • Shayenne
    Shayenne Member Posts: 2,342
    #9
    kmygil said:

    The saw about time....
    Yes, Pamysue, the old saw about time healing all wounds is pretty close; it will take time, but hang in there. Depression is common after stopping chemo--you sort of feel like you aren't actively fighting it when you're no longer taking the drugs, and you get afraid that it will come back if you aren't. Things will get better, but don't be afraid of taking or upping antidepressants. You can't heal well if you're in the dumps. Our bodies take a lot of their cues from the mind and spirit. Keep them healthy and your body will respond.

    Hugs,
    Kirsten

    Keep Rambling!....
    ...I can read your posts all day! I didn't know Vitamin C was bad, I usually drink Orange juice, should I stop drinking the juice then, and find a mult-vitamin that doesnt have Vitamin-C? I was thinking maybe buying Women's One A Day be good?

    Huggssss!
    ~Donna
  • pamysue
    pamysue Member Posts: 105
    #10
    kmygil said:

    The saw about time....
    Yes, Pamysue, the old saw about time healing all wounds is pretty close; it will take time, but hang in there. Depression is common after stopping chemo--you sort of feel like you aren't actively fighting it when you're no longer taking the drugs, and you get afraid that it will come back if you aren't. Things will get better, but don't be afraid of taking or upping antidepressants. You can't heal well if you're in the dumps. Our bodies take a lot of their cues from the mind and spirit. Keep them healthy and your body will respond.

    Hugs,
    Kirsten

    Thanks, Kirsten
    I really think the Nuerontin is screwing with my head. More than it is usually screwy. I have been on 20mg Paxil for years. They doubled that after my dx and my insomnia got WAY worse, so we dialed it back. I'm seeing my reg Dr in a couple of weeks and am going to talk to her about this.

    Donna - And yes, I was told not to take any supplements during chemo. But NOT told not to dring Orange Juice or anything like that. I did stay away from high acid food and drinks just to lessen the changes of getting mouth sores though.

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