Discussion Topic

getting off Gabapentin

Posted on 01/03/11, 11:49 pm
My daughter has informed me that she wants to quit taking gaba because she doesn't think it's really helping. I'm gonna call one of her drs first, of course. But i was wondering if any of you have stoopped taking it? I've heard there can be withdrawl symptoms.

I'm having her tested for Lymes disease. "They" say it doesn't occur in Texas, but I know different. She hasn't had a tick bite that we know of either. But we go camping in the woods and to our deer lease. I'm grasping at straws here...I'm desperate! A year and a half of pain is starting to get to her. She's had to pass on activites with friends. I'm also checking into pain couseling. What helps you guys deal?
Showing 6 Replies
  • Reply #1 01/04/11  12:55am
    Read my profile to help you understand a couple of things. I have been on many different meds for neuropathy and gabapentin was the only one that worked. At first, it did not work. The nice thing about gabapentin is that you do not need to take it for a while to build up in your system and it isn't toxic, well, relative to the subject anyway (to answer your question about withdrawl, it shouldn't be an issue. It's a non-scheduled drug and not toxic...BUT, I am not a doctor). I called my neurologist after trying gabapentin the first day. I was in severe pain and frustrated because it didn't work. He advised me to double or triple the dose (He started me on a small dose). I did and the next day I felt some relief for the first time in over a year! The pain and electricity was still there, but at least I knew there was hope. Eventually I had reached 6000 mg per day (over the next 2 years). That is a lot, but to that point, there was no alternative. I was also taking hydrocodone for the breakthrough pain, but my body got used to it. I was offered several options for pain relief. I guess being a narcotics officer at the time, I had a unique understanding and perspective of pain meds so my doctor worked with me a bit. My doctor and I chose morphine. After doubling the dose with no effect, I researched some more. We chose methodone. It really doesn't have much street value because it doesn't make you high and I also didn't have to worry about someone wanting to steal it like oxycontin (oxycontin was an option that I did not choose, but would have, if methodone did not work). The big problem with methodone and probably the biggest reason it has little street value is that most people, including me, become very ill for several days until your body adapts to it. I was sick for two weeks when I first started it. I'm very thankful I did not give up on it. It has allowed me to reduce the dose of gabapentin to about half of what I was taking. Many people have stated that even small amounts of gaba make them very tired and in a cloud-like state. I felt like sleeping all the time on high doses, but the lower dose was not as bad. The loss of memory and cognitive ability was the killer on 6000 mg of gabapentin. I reluctantly proclaim that I am fortunate to have ADHD. Because of this, I am prescribed adderall. The adderall counters the fatige the gabapentin and methadone produce. Everybody reacts differently to medications. After listening to myself wright about this, it's amazing that I'm not a zombie. The fact is, I feel better at this time. My thoughts are sharper than before and my memory isn't as bad. I'm by no means feeling "normal" as I remember it, but without the fog much of the time. My condition is progressing. Otherwise, I may have been fine on 1200 mg a day. It will depend on what is causing her neuropathy and if it progresses. If she can stand taking a prescribed higher dose, just to see if it helps, try it. Prior to gabapentin, I was on Lyrica and then nortryptoline(?). As I said, everyone reacts differently, but I would not wish the experience I had on those meds on anyone. I wish they would have or could have tried gabapentin on me first. I hope that helps a little. I wish you and your daughter well. If I can help out with anything, let me know. I will do what I can. I understand what she is going through and will pray for her. I will ask the others in this forum to do the same. I never knew the power of prayer and the gifts one receives. And all we have to do is ask Him for His help. I have always received more than I asked for. Until several months ago, I had never prayed. I had gone through the motions since a child, but I hadn't faith. God bless you.
  • Reply #2 01/04/11  7:01am
    I will pray for your daughter too. It really sucks when you are trying to find a reason for the pain. A diagnosis would be bliss!! I went off Neurontin slowly lowering the dosage every day. It did not help me either. I was on it for about 6 months at high enough doses that I was loopy a lot. Good luck!!
  • Reply #3 01/04/11  7:54am
    Thank you all so much! The first neurologist did the skin biopsy and said she had neuropathy. SEVERAL drs since do NOT think so. They say the skin biopsy is too new and not done enough on youth. She has pain in her hands and feet and shocking/tingling too. She's been to some of the best drs in Texas. No one can seem to find out what's causing this. Someone saw a friend's post to me on facebook and contacted me. Her son had Lymes disease and no one would believe it here. He didn't have all the normal symptoms. So now I begin my fight to get the right tests to rule this out for her. I (and especially her) want a diagnosis, other than chronic pain syndrom. I SOOOOOOOO appreciate everyone's prayers! That is what helps the most! I know God has a plan for her with all this. Just getting hard to be patient.
  • Reply #4 01/04/11  3:08pm
    Believe me I think of her daily. I was tested for Lymes disease in the beginning, it was negative. I would give it a try, you never know. Thye have me on cymbalta, now as well. You see it advertised in the magazines. Take care!
  • Reply #5 01/08/11  1:38pm
    You can't just stop taking Gabapentin, it could cause a seizure. You have to taper off of it. Maybe she needs more of it. Over time it stops working and it need to be increased. Alot of people think its not working and then when they try to get off of it they realize it was working, but that they need more.

    Can I ask, what did the Dr's say her diagnosis is? She and are sound similiar in symptoms, but my Dr's cannot give me a diagnosis. They say I don't have neuropathy because I don't have loss of sensation....only the pain. I've been referred to a pain specialist, because the Dr.'s say there is nothing more they can do for me.
  • Reply #6 01/08/11  3:04pm
    Her diagnosis is chronic pain disorder. To me that means she is in pain and they can't figure out why. I am having her tested for Lymes disease next week. So many of the symptoms are similar to what she experiences. I'll let yall know what they say. I really appreciate all the feed back and support from this group. I am also looking into getting her into therapy. She NEEDS to talk to others in similar situations.


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