Tapering off neurontin nightmare!

Posted , 5 users are following.

I have been on 300 mg of neurontin, 2 caps in the morning, 2 caps after noon, and 4 caps at bedtime for 3 years due to leg and foot neuropthy. Last January, I decided to taper on my own and was doing very well with no WD symptoms until I went from 600mg to 300 mg at night. I feel cut from 600 to 300 was way too much. Had to call Dr for tapering directions. I am now going to lessen by 100 for a week instead of the 300 cut. I have felt awful! Worse than flu like symptoms. The profuse sweating and shortness of breath are the worse! On a good note, I have lost over 30 pounds to tapering from 2400 mg daily. Just can't wait to feel better. This is a true process so please follow drs orders to taper .

1 like, 15 replies

15 Replies

  • Posted

    my goodness, it makes me want to not take it at all..i have only been on it a week.

    best wishes and so happy for you on your weight loss

    • Posted

      Please be careful and pay attention to side effects. I had horrible swelling in hands, legs, and especially feet. I felt neurontin was a good drug for my neuropathic pain but the side effects, I couldn't take. If you decide to come off of it, please talk o your doctor first. I have been up since 2 am. Woke up hot and sweating profusely. Had to take 200 mg, an hour later, I'm cold and ready to go back to bed. Good luck and take care!
    • Posted

      I lost 2 stone when I tapered off toi quickly but only because I was so ill. When I finally felt better - and it took months rather than weeks, my appetite was enormous. I craved sugar and put it all back on again.
  • Posted

    Hi Cythia,

    At least you called your doctor. I have been given almost every pain drug available and the only ones that are working for me now that I am back to excercising and tapered off of hydrocodone is Lyrica, Aleve, Lidocaine Visous Patches 5% and religiously doing my stretch charts, yoga, biking and have even started doing a strength training video with 2 pound weights. 

    I have had a much better experience with Lyrica at 50mg 3 times per day. Not that I am suggesting you take any other medications but if you need something Lyrica might not be a bad choice. On Neurontin/Gabapentin at 1200mg per day after one year I wanted to commit suicide. My doctors have it listed as me being allergic. Now every time something is prescribed to me I read the label and check the reviews. 

    All or most medications have side effects. Some doctors won't believe you or don't care. Can't he give you something for the side effects? There are drugs such as valium and ativan that will ease your symptoms. Also you could try using Zantac tor your stomach issues. I had severe Gastrointestinal problems after they had me on Gabapentin and a Proton Pump Inhibitor medication which helps heal your stomach lining. Just last night on the news I heard that Zantac is safe while a lot of the other drugs on the market which contain PPI's can give you heart problems. Stay safe. The Prescription Drug Industry kills more people than illegal drugs and that is just a fact. Good luck! 

  • Posted

    I have been on Gabapenti for 18 years now. I take 2400 mg a day.  I have severe chronic migraines and seizure disorder.  Also I have had repeatedl head trauma.  I am  tired of being large.  I am in the 190's.  My doc said I could be bigger and have some quality of life. Or I could lay in a dark room and be in more pain and thinner.  Dr. Said  I will be on this the rest of my life. It does help a lot with the seizures. I can tell  when I have missed a few doses.  I have tried to taper off over the years. Not good. I am glad to know that the weight loss will occur if I ever get to reduce the mess.  Good luck Kathy 
    • Posted

      Dear Kathy, 

      There are other seizure disorder medications that might give you a better quality of life such as Depakote which I take 500mg at night for Bipolar but it is an anticonvulsant. Also I take Clonazepam 2 mg per day for anxiety and agoraphobia. My ex beat me and I had a head trauma too after the car accident and I wanted to leave him then he tried to kill me. I also take Lamotrogine and my NP started me at 25 mg per day. That is the smallest dose possible since Depakote causes the Lamotrigine dose to rise in the blood. It is also classified as an anticonvulsant/antiseizure medication. Maybe what you need is to find a Nurse Practioner because laying in the dark all day because of seizures and (not to be rude but it sounds like you got agoraphobia like I did) will not help you. You probably have some form of disorientation when you go outside too. I have that too. I try my best to walk carefully. I do better on bike rides. Make sure if you start exercising outside or at the gym that you wear a medical bracelet. I cannot drive because of my medications and I have to be so careful getting off of the bus because they don't pull up to the curb here in the Portland Oregon Area. I would ask about exercising and find a Female PMHNP (Psychiatric Mental Health Nurse Practitioner) that can maybe wean you off of Gabapentin and help you with your emotional issues toward your weight and possibly switch you to some better anticonvulsants. I would try getting on just plain Lamatrogine, going down on the gabapentin (she can help you with that too) and then clonazepam to relax when you need to. It will help you to not have seizures too. Ever since I've been on the Lamotrogine at 25mg I've been only sleeping 5 to 6 hours per night. Everyone is different. I just think Gabapentin is a really bad drug. And you have been on it 18 years? You will need help getting off of it. If your GP (General Practitioner) is the one you've been seeing 18 years there are new and better treatments and maybe its time you tried something else. Do your research first but all I know is I'm exercising and feeling much better. I have had a seizure before. Not fun. Do you even still have seizures? If you do or don't the PMHNP (a female) not male would be a good way to go. This could be more of a fear and emotional thing and I hate for you to be overweight and lay in bed. I did it for over a year and then struggled to walk and had 3 surgeries the next 1.8 years. I feel better now than I have in a long time. Change is good sometimes. All you have to do is go into your insurance network and pick up the phone or go to the website and set an appointment and you might be surprised what happens. Don't be afraid to get help. You dont' have to tell anyone that you have a psychological disorder even if you find out you do. Just say you are going to the NP and talk about your feelings about what is happening to you. Sufferring while detoxing and losing weight because of gabapentin withdrawal sounds worse than getting help getting off of it and getting on more stable anticonvulsants. Lamotrogine makes me have energy toosmile Good luck. It has side effects so they have to start you off on a very small dosage and increase over time. You can look it up on web md and it will have a list of another 15 antiseizure/anticonvulsant medications.  

    • Posted

      Hi, I Was on depakote and it rotted my teeth out of my mouth.  My last seizure was 4 years ago.  I was in a abusive marriage but now am happier divorced.  I got a new neurologist and I am going to ask for a different this next November. I have had migraines since  I was 8.  The concussions  over the years are more like the TBI injury the football players get.  In my opinion.  I just finished up four years of seeing the behavior health therapist and I have lorazepam.  I am keeping my options open. I am always hoping to hear something new and improved for me. Thanks for following me. Kathy 
    • Posted

      Hi Kathy, 

      I'm on 500 mg of Depakote and I started getting small cavities on my teeth. I was wondering why. Now I know. Thank you for the information. I already told my NP that I want off of it and she said that it will take two months to taper me off and increase my dosage of Lamotragine. I'm glad you have the Lorazepam, the only thing is that I was on that too and I have had a severe concussion, hematoma and seizure due to physical abuse too. If Lorazepam works for you great. I was on it and it made me want to sleep all of the time. Klonopin/Clonazepam is different in that if you take .5 mg every couple of hours per day you wll be able to stay awake and maybe excercise to help get your weight down like you want too. I do not believe that the Gabapentin withdrawal will make you lose that much weight. I think I lost 10 pounds when I went off of it. How much weight are you looking to lose? You would have to exercise, stretch, and do some type of cardio. Riding a bike is easier for me because it works your whole body and strength trainig wiith help make your muscles come back. You need strenght and agility. Keep me posted on your situaion/ Just beieve you will get better. It is the law of the universe that if you want something to happen so bad such as getting well you would not want to let anything get in your way. It may help to find a work out buddy or do tapes at home. You are in a situation where you wll probably have to exercise ike ridiing a bike, treadmill or eliptical or even swimming for 10 minutes at a time. After only 3 weeks I have lost weight and am working my way up to doing stretching, crunches, plank lifts for my stomach and then a Jane fonda video where she does stretching, weight training and cooling down. Then I have to do my chart of stretching again to loosen up my back. I have to then rest the next day to let my muscles recover using a tens unit, aspercreme, and Lidocaine patches along with more stretching. Its a long process but if you believe in yourself you can do it. 

    • Posted

      hi, the depaKore rotted my Teeth from the inside out.  I ended up with dentures at 26 years old.  I do try and work out and I actually have the Jane Fonda  tape too.  I lose about ten lbs and then my head. Issues get bad so they put me on prednisone and I go back up.  I keeeep. Trying. It. Gets old.  Watch out for your teeth!    Kathy 
    • Posted

      This statement got my attention because last January I was diagnosed with a total abscessed mouth and started having my top teeth pulled in January. Having a tooth pulled every 10 days, I finally had the last top tooth pulled June 5 th and now have Dentures! So its possible the neurontin caused my teeth to abscess to the point of having to get Dentures???! Wow! I have just had a bottom tooth pulled 2 weeks ago. Dr.s need to tell their patients all side effects about this and all medications. I'm surely going to stick to the tapering. My neurologist's nurse told me it would take months to finish and even longer to feel "normal" again. Good luck to all!
    • Posted

      That was a side effect of Depakote. I wouldn't rule it out because you could have been on many medictions that coudl have caused you this dire consequence. I'm really sorry for youl You seem way too young to have lost all your teeth. I would go over all of the medications you were taking and then see if any of them cause tooth loss. I was unaware of the deteroriatio of my boy on Depakote ( but aware of the hair loss) till I was put on Lamictal. Then my teeth started to turn white againg and my hair stopped falling out. A huge difference in just a few weeks! 
  • Posted

    Hi Cynthia. I am definitely watching out for my teeth. I am thinking of just going down to 1/3 of a tablet of Depakote for two weeks and then letting her know when I meet with my NP. Then another 1/3 for two weeks and so on. I want off of Depakote. It also made my hair fall out. Good thing I had a lot of hair. Lamotragine actually stimulates hair follicle growth so after only a few days of taking it my hair stopped falling outsmile I was in so much pain this morning. I got up and my left side sciatica area was really bad. I had to take the hottest shower possible. Take Lyrica 50 mg, Aleve 220mg, Robaxin 500mg, Put on a Lidocaine Patch and put Aspercreme on the rest of my side area and bottom to stop the pain. Now I can ride my bike. Because of the abuse my tailbone is twisted. I am trying to straighten it out with yoga and stretching. I have to wear a maxi pad when I ride my bike. I'm looking for a bike pad but we will have to go to the bike store and we are really busy. I am sad. We put my 16 year old miniature schnauzer down yesterday. He had all the signs of dying and he was in a lot of pain. His breathing was becoming shallow, he was peeing on the floor, he was throwing up bile, not eating as much or very little. It was a peaceful process and we were there with him. We are getting his ashes. I would like to become friends. Do you have a Facebook Account? I don't know how to give you my information without exposing my identity. Maybe I will open a Yahoo account and you can email me? Its important to support each other and I have a lot of friends in pain that I speak with on a daily basis and we try to help each other. Its really neat. Some are on Facebook. Ok well I'm medicated and ready to go for a bike ride. The sudafed my doc gave me for allergies is making me hyper so thats good because its actually taking away the tiredness that all the other medication causes! Have a wonderful Sunday! 
    • Posted

      I am glad You can ride your bike. I woke up with a headache so I am resting today.  I don't have the balance to ride a bike.  I fall real easy.    The stationary bike is my speed.  Enjoy the day. Kathy 
    • Posted

      Sorry about your headache. I woke up with extreme left side back pain from my buttocks to the middle of my back. Hot shower, lidocaine patch, aspercreme. meds and a muscle relaxer. I'm real tired too now. I went to sleep around midnight and woke up at 4:45am. I'm going to go to sleep too. I hope you got some rest. Debra
    • Posted

      My hair has thinned so much!!!! I get a handful of hair every time I wash it. It is longer than shoulder length. Haven't noticed any chance in that. No balding just so much thinning. Anyone have OTC remedy for this?

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