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Thread: seeking others w/ CENTRAL CORD SYNDROME

  1. #111
    Senior Member trekker6's Avatar
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    There's the dry skin, tiredness, although it gets better the longer you use it and the sexual thing, it gives a lot of guys ed. There's more, use the search function for neurontin, lots of people get off that and baclofen. I'm stiffer and more sensitive, but to me it's well worth it, if it caused me to be unable to function, then I'd have to rethink it, oh yeah they slow down your digestive system, causing lots of problems.

  2. #112
    Senior Member Revis's Avatar
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    Quote Originally Posted by trekker6 View Post
    There's the dry skin, tiredness, although it gets better the longer you use it and the sexual thing, it gives a lot of guys ed. There's more, use the search function for neurontin, lots of people get off that and baclofen. I'm stiffer and more sensitive, but to me it's well worth it, if it caused me to be unable to function, then I'd have to rethink it, oh yeah they slow down your digestive system, causing lots of problems.
    Thanks for sharing your personal reasons for dumping the neurontin. I've read the threads on CCC, but was curious from someone's perspective with ccs. I just finished walking outside in the 30 degree temps. I walk very stiff when it's like this, and my arms almost do nothing they are so "frozen." I have a long time to wait until it turns warmer.
    CCS/Walking Quad

  3. #113
    Senior Member trekker6's Avatar
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    Revis, I just walked outside for you, it's a balmy 76.
    When my arms freeze up, my elbows pull in to my chest, does that happen to you also?

  4. #114
    Senior Member Revis's Avatar
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    Quote Originally Posted by trekker6 View Post
    Revis, I just walked outside for you, it's a balmy 76.
    When my arms freeze up, my elbows pull in to my chest, does that happen to you also?
    Trekker6...76 degrees sounds so good to me right now. It's lightly snowing outside and cold, about 30 degrees. Makes walking treacherous. When I get cold and freeze up my arms just don't want to move. They sorta hang there. The prickly sensations get more intense. But, they don't pull in towards my chest. Enjoy your great weather. I'm hoping to be in central FL in April.
    CCS/Walking Quad

  5. #115
    Senior Member trekker6's Avatar
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    It's the price you pay for living in such a beautiful area, you have your freezing winter, but cool springs and falls and great summers, half the year here it's unbearably hot, I have to get well to get back into waterports during the summer instead of hiding in the air conditioning.

  6. #116
    Wow trekker6 the warm weather sounds heavenly about now!! This cold Minnesota weather is horrible right now and it really hasn't been as cold as it usually is; I'm not looking forward to January and February.

  7. #117
    Senior Member Revis's Avatar
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    Trekker6, you are right about the beauty of this place. I never worried about winters here since I loved to ski and got out on the local slopes (5 of them) as often as possible. Then it all caught up with me...Summers are great, then the fall, and then the spring, in that order. Spring can really be rainy. Following your lead I'm experimenting with being off neurontin. Tried to be off for 36 hours earlier in the week. Right now I've been off for 54 hours. I seem to be stiffer, but it's so hard to determine.

    Faceplant, I share your pain about the cold temps. I'm hoping I can endure the cold until mid-March. So far the snow hasn't been too bad, but they say its coming with La Nina growing stronger. Have had to push snow off my driveway and walks twice this week...1/2 inch skiff each time. I'll take that over 6" dumps any day.
    CCS/Walking Quad

  8. #118
    Trekker6 and Revis~ I noticed you were talking about getting off Neurotin....Is there something else your going to try? I am on Lyrica right now because i got pretty goofy on Neurotin...they just put me up to the 300mg per day dose but I still have the pain. My Doctor talked about trying Topamax next but I am wondering if it's just better to deal with the pain than to deal with all of these side effects. Just wondering if you have any input on any of this. Thanks

    I am hoping for a nice cozy holiday of warmer than usual temperatures!!

  9. #119
    Senior Member Revis's Avatar
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    Quote Originally Posted by faceplant View Post
    Trekker6 and Revis~ I noticed you were talking about getting off Neurotin....Is there something else your going to try? I am on Lyrica right now because i got pretty goofy on Neurotin...they just put me up to the 300mg per day dose but I still have the pain. My Doctor talked about trying Topamax next but I am wondering if it's just better to deal with the pain than to deal with all of these side effects. Just wondering if you have any input on any of this. Thanks

    I am hoping for a nice cozy holiday of warmer than usual temperatures!!
    Faceplant, I'm sorry to hear that the Lyrica is not helping you, and you're on a pretty strong dosage. I know that Neurontin helped me during the first 6 months, at least. There was a period when I had worked up to 1200 mg a day (2 doses of 300mg in the day and 2 at bedtime). I also pulled back from the Neurontin for a while and added 13mg of Amytriptlin. That didn't seem to make any difference except the Amy helped me sleep at night. Some people have had good results with this combo. I'm on day four being off of Neurontin. Honestly, I don't think I can tell much difference. At this point I'm hoping to be totally off the Neurontin and just live with the symptoms. I think this is possible because some of my pain has eased off as compared to the first 3 to 6 months. I didn't suffer many side effects from Neurontin. Just preferring to get to that place where I don't take anything.
    CCS/Walking Quad

  10. #120
    Thanks for the info Revis,
    My doctor did talk about adding the Amytriptilin too so we will see what he says tomorrow as I have a follow up appointment. I see him every 3 weeks and do 2 weeks of PT/OT in between visits. I just got a home TENs unit to work with but so far it hasn't helped very much. I am hoping to wean off the Lyrica and see how things are. I am miserable anyway so I have a hard time believing it could get worse. Deep breath right....I hope everyone has a great holiday and a pain free new year!!!

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