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Stop taking Neurontin?

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    #16
    Wow David,

    Thanks for posting this! I haven't read every post but I also swear Neurontin caused some burning, parathesias, etc. I NEVER had this UNTIL I took Neurontin. I was on it for about 3 years and started off with 300mg and could barely tolerate the SE's. My Neurologist had to keep taking me down, down, down until I was at 50mg and I STILL couldn't handle it. I kept telling anyone who would listen that it caused an INCREASE in the burning sensations. But most people thought I was nuts because it is supposed to help with it. Well, anyway, I stopped it a long time ago and NEVER want to go back to it. And I agree, that's not to say that it doesn't help alot of people. But I was always amazed at the doses people can take and do just fine. So, I thank you for finding more info. on it.

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      #17
      Originally posted by David Berg
      Has anyone here ever used Neurontin (for pain or any other reason), but decided to stop taking it because of side effects? I'd like to hear about side-effects that made anyone decide to quit using Neurontin.

      David Berg

      Yes I did, I was on 1400mg and I was so tired and felt like hell the whole day about 5 months after I was on it, I stopped, not cold turkey but I just weened myself off of it.


      Warning it is super painful, but soon the pain turned into extreme itching but now I only get itchy when its cold or I'm sick.
      Injured:10-16-04
      C7/C8, T1 incomplete;


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        #18
        I was taking it 24 x 7 but kept falling asleep.
        Now I only take it in bed, to sleep better.
        sigpic

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          #19
          I was just researching this subject (again!) and found this site with a very comprehensive list of the side effects, many I experience. Note the first point that the drug is not metabolized by the body and must be eliminated solely through the kidneys, not a good thing for us.

          http://www.drregpeart.org/neurontin.html
          Neurontin is not metabolized by the body, i.e., it does not produce active or inactive metabolites. It is eliminated solely by renal excretion.

          Side effects: Drowsiness, dizziness, fatigue, muscle tremor, vision disturbances, indigestion, weight gain, mood changes, hallucinations, decreased kidney function in over 60s, diarrhea, dry mouth, nausea, vomiting, peripheral oedema (1), anxiety, abnormal gait, amnesia, nystagmus (2), asthenia (3), parathesia (4), abnormal thinking, emotional lability (5), hyperkinesia (6), infections (urinary and upper respiratory tract), dysarthria (7), arthralgia (8), diplopia (9), amblyopia (10), constipation, flatulence, impotence, leucopenia (11), depression, psychosis, headache, pancreatitis, incontinence, alopecia (12), allergic reactions, rashes and angioedema (hives), chest pain, palpitations, movement disorders, thrombocytopenia (13), tinnitus (ringing in the ears), acute renal failure, purpura (14), changes in blood pressure, seizures, confusion, impairment of mental alertness, coordination problems, ataxia (15), coughing, rhinitis (16), pharyngitis (17), nervousness, myalgia (18), back pain, dental abnormalities, puritis (19), twitching, fever, abdominal pain, confusion, acne, vertigo, decreased or absent reflexes, hostility, variations in blood glucose level.
          Definitions from answers.com:
          1) An excessive accumulation of serous fluid in tissue spaces or a body cavity.
          2) nystagmus: A rapid, involuntary, oscillatory motion of the eyeball.
          3) asthenia: Loss or lack of bodily strength; weakness; debility.
          4) parathesia: A tingling sensation felt in a part of the body numbed from lack of circulation.
          5) emotional lability: Open to change; adaptable: an emotionally labile person.
          6) hyperkinesia: An abnormal increase in muscular activity.
          7) dysarthria: Difficulty in articulating words, caused by impairment of the muscles used in speech.
          8) arthralgia: Neuralgic pain in a joint or joints.
          9) diplopia: A disorder characterized by double vision.
          10) amblyopia: Dimness of vision, especially when occurring in one eye without apparent physical defect or disease. Also called lazy eye.
          11) leucopenia: An abnormally low number of white blood cells in the circulating blood.
          12) alopecia: Loss of hair; baldness.(!!!)
          13) thrombocytopenia: An abnormal decrease in the number of platelets in circulatory blood.
          14) purpura: A condition characterized by hemorrhages in the skin and mucous membranes that result in the appearance of purplish spots or patches.
          15) ataxia: Loss of the ability to coordinate muscular movement.
          16) rhinitis: Inflammation of the nasal mucous membranes.
          17) pharyngitis: Sore throat; Any of various inflammations of the tonsils, pharynx, or larynx characterized by pain in swallowing.
          18) myalgia: Muscular pain or tenderness, especially when diffuse and nonspecific.
          19) puritis: Severe itching, often of undamaged skin.
          Last edited by quadvet; 3 Jul 2008, 3:30 PM. Reason: Add definitions
          get busy living or get busy dying

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            #20
            I was on on neurontin for about 3 yrs or more & had a lot of these side effects! After switching to Dilaudid & MS Contin SR, I still continued to have some of these still today.Since my pump was installed & I am no longer recieving the drug thru bloodstream,kidneys etc,I still have the prolonged side effects after high drug dosages from the preceding 10 yrs! Whether these side effects ever recede is beyond me,they can sure reek hell w/ our lives,mental states,& ability to lead some kind of independant life.I miss my mind & memory the most!

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              #21
              Bump for hoping others will share their experience discontinuing Neurontin, and if others experience the above symptoms.
              Last edited by quadvet; 3 Jul 2008, 8:07 AM.
              get busy living or get busy dying

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                #22
                Constipation Cure

                Originally posted by alan
                Because of constipation, I've never gotten to high enough dosages of any opiate (methadone, MSContin, or Oxycontin - tried 'em all) to relieve my pains. I plan to try the long-acting dilaudid when it comes out, along with shitloads of laxatives, if needed to reach an effective dose.

                For those taking pain meds, get a GOOD colon cleanser from hi health or others. It is in capsule form Take as needed as directed. It works like magic! I have not had that problem since!

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                  #23
                  I've cut myself down to 300 mg twice a day and sometimes I forget to take my morning to us but I don't notice any difference. I was taking 3600 mg a day but it was giving me some severe memory problems so I cut down slowly. I notice in a couple of days if I haven't had it so I continued to take it. That's my experience, but I learned how to cope with my pain for the most part. It never really dips below 5 but I'm used to it so I try not to complain anymore.
                  C-5/6, 7-9-2000
                  Scottsdale, AZ

                  Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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                    #24
                    Neurontin gave me a lot of neurological problems

                    Hi David -
                    I'm getting into this conversation late but wanted to post my story since i found it helpful to read others'. I was searching online for people like me who developed neurological problems when taking Neurontin.

                    I'm a 31 year old female who injured my coccyx in 2008 and my tailbone is now sitting on a nerve which causes me pain. Back in April of 2009, I was given a compounded creme with Neurontin in it for the pain and after three weeks of use, I developed neuropathy (tingling and burning) in my hands/feet and tongue. None of my doctors believed it could be the neurontin causing this and i had a million tests to rule out various neurological disease. The neuropathy continued to progress even after i stopped using the medication. In September, a doctor convinced me to start taking neurontin in pill form because they didn't believe that Neurontin was the original trigger of my neuropathy. I was in enough pain that i agreed. I was taking 300mg twice a day. On the 5th day, i noticed that my joints were all killing me, including my jaw which is now extremely tight. I developed tmj, tinnitus, hyperacusis (hyper-senstive hearing), hyper sensitiviy to light, weakness in my facial muscles and breathing problems. None of these have gotten better even though i've been off Neurontin for over a month.

                    My Neurologist is completely baffled over why i developed these problems and basically said there was nothing else she could do to help me.

                    Aside from the tailbone injury, i was very healthy before taking Neurontin. Has anyone else had anything similar happen after taking this medication?
                    Last edited by celery; 9 Nov 2009, 9:39 AM.

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                      #25
                      I quit taking it because of the following:

                      clouded thinking ability
                      weight gain
                      nausea

                      After awhile the side effects did go away except for the weight gain. I could look at food and gain weight.

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                        #26
                        I take 600mg, 4x/day......The most severe side effect is blurred vision and I think that over the past year my overall vision has become noticeably worse, although I don't know hw much is attributable to the neurontin.
                        Rick Goldstein
                        GO! Mobility Solutions
                        facebook.com/goes.anywhere

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                          #27
                          I recently went cold turkey on the neurontin (from 4x600mg) just to see what would happen. I found that the pain wasn't any worse, just more frequent. That is, I spent more time at "peak pain" than I did before. I wanted to stay off it but I've started taking it again because even a small amount of relief helps. I haven't noticed the severe side-effects mentioned here though.

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                            #28
                            I've quit taking it and have felt much better since. I felt hungover 24/7 while taking neurontin. I haven't taken any meds for a couple of years now. I feel less polluted.

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                              #29
                              Zero - I am glad you did well after stopping Neurontin cold turkey. I just want to get it out there that stopping cold turkey from a high dose of Neurontin, Lyrica, or other anti-seizure drugs is risky. It could precipitate seizures. What a bummer that would be! So better may have been to lower the dose gradually, if only to prevent potential seizures.

                              May I ask what dose did you return to to give you relief?

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                                #30
                                Originally posted by arndog View Post
                                Zero - I am glad you did well after stopping Neurontin cold turkey. I just want to get it out there that stopping cold turkey from a high dose of Neurontin, Lyrica, or other anti-seizure drugs is risky. It could precipitate seizures. What a bummer that would be! So better may have been to lower the dose gradually, if only to prevent potential seizures.

                                May I ask what dose did you return to to give you relief?
                                I'd never heard that stopping neurontin could cause seizures, thanks for the note. I do know baclofen withdrawl can be dangerous.

                                Lately I've been taking 300mg morning, 600mg noon and 600mg night, so I'm just over half the daily dose I was at before. I'm still experiencing a lot of pain in the evening though.

                                I've been offered a Lyrica sample to try but I'm hesitant. I don't want to start the process of gradual increasing resistance to a new med, I want a pain management solution that will be stable long term.

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