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Anyone on Neurontin?

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  • Anyone on Neurontin?

    Brand name is Neurontin and generic is Gabapentin. Its supposed to be used for relieving certain types of nerve pain. I believe its an anti-seizure drug! My doctor gave me stuff to read about it and said he's had great success with it.

    Anyone out there on this one?? Love it, hate it? Side effects?


  • #2
    I use to be on it (not for my IC-- but for back pain. Loved it. Had to get off of it however, due to being on Topamax. ( you shouldn't be on both). If you do get on it though, you have to go slowly with it-- (100mg at a time- can't remember if its for a week or what- its been that long.) Good luck!)


    • #3
      I'm not on it, but I've heard of others here who have had great success with it.


      • #4
        I was wondering the same thing too. Someone suggested it since I don't like the cravings I am getting with Elavil. Hope some more posts come in.

        6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

        tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning


        • #5
          I just started taking lyrica, which is on the same order as neurontin. I also took neurontin a couple years ago for nerve pain but had to stop it because it upset my stomach to much.


          • #6
            I love neurontin....... it helped my IC pain much more than ultram, vicodin and plenty of other pain medications
            current meds:
            cytotec 200mcg twice daily

            ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

            dx: hashimoto's thyroiditis 1998
            dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
            dx: endometriosis 2003
            dx: innapropriate sinus tacchicardia 2005

            meds tried but failed:
            elavil (6months)- severe tachycardia
            elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
            a bunch of others

            Me and my best friend's baby (also my Godson!)


            • #7
              I love it. I was hesitant to take it because i didnt tolerate lyrica all that well. But neurontin has helped with my bladder burning, havent had to take a urelle in awhile. Also helps with my normal discharge would burn like crazy and now it doesnt. Im only on 100mg but my NP wants me to go up to 200mg and Im just trying to find the time to try it during the day to see if it makes me too tired.

              I would give it a try.

              Lyme disease diagnosed 11/05
              vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
              IC diagnosed with hydro/cysto- may 17, 2006

              Over growth of lactobicilli found 8/07 treating with doxy.

              Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

              8/22/07- was able to get my first speculum exam, with pap

              Strep D found in bladder with United medical labs May 2006
              2 strains of strep in stool culture 9/06
              high Strep ASO titre found 10/06

              NEW MED

              Capsasin cream-once a day for 20min,
              BUt wont lie it does burn

              About to start valium supositories for PFD

              Trigger point injections- oct 07

              Current meds:
              Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
              Zanaflex 2mg
              IC and low oxalate diet, no sugar diet
              Xanax for appointments to help relax me since they cause so much pain

              Started PT 3/07, PT has really helped me in ways I never knew that it would

              Meds ive tried
              Soma- can barely tolerate half a pill
              Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
              Estradiol cream
              Urelle- caused worse bladder spasm and retention

              Various antibiotics for lyme which caused yeast and made the IC and VV worse

              waiting for the next chronic illness to pop up

              "Did you know?
              Every 15 seconds,
              a person is
              diagnosed with
              interstitial cystitis."
              Source: J. Dimitrakov, MD


              • #8
                I have been on it for about 4 yrs. My dose for a long time was 300 mg 3 times a day. It seemed to help at the beginning, but I am not sure if it was the Neurontin, or something else, since we started so many things about the same time. Since I was feeling better for a while, my Dr. didnt want to take anything away, since we didnt know if it was a specific med helping or the combo. But, since my pain worsened over the last few years, I ended up going to a pain clinic. They put me on Morphine and Lortab. It helped alot at first, but I think I have gotten used to the dose, and it doesnt help as much as it did. But, the pain Dr. wanted to try increasing the Neurontin before we did anything else. So, he has been titrating the dose over the last several months until it got to the max. The increase didnt really do much except make me sleep and eat all the time. But, there was no difference in my pain level. So, last month, they started titrating it back down to get me off of it. I will be off of it entirely next week, and they wrote a r/x of Keppra for me to start then. It is also an anticonvulsant. The anticonvulsants are prescribed frequently for nerve pain. Since they arent sure if some forms of IC could be nerve related, that is why so many Drs. try it. In my case, I definatlely think mine is nerve damgage from when the Endo grew thru my bladder. So, hopefully the Keppra will work. But, if it doesnt, the NP said we will try Lyrica next. I am really hoping it will help.

                I hope the Neurontin works out for you. Alot of ICers get alot of relief with it. I hope you will be one of them.



                • #9
                  I'm on 100 mg. per day as a migraine preventative...I only started it a few weeks ago, so I'm not sure how it's working, but I believe it may be helping so far. I don't notice any side effects, but this is a low dose.


                  • #10
                    I'm trying to get off it, now that my symptoms are starting to improve. I'm really not sure if it helped me; it did make me sleepy and weight gain is a common side effect.
                    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                    Wishing you happiness and good health, and all the best out of life.

                    Peace, Carolyn

                    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                    On the Beach with IC


                    • #11
                      I was put on Neurontin for seizures & migraines. I was pleasantly surprised when my IC symptoms stopped. I took up to 3600 mg daily for approx 12 yrs.


                      • #12
                        I have been on Neurontin for a couple of years now. Started with 100 mg, now up to 800 mg twice daily. On a bunch of other meds, so was not sure how much it was helping, my pain doctor said I could go up to 3200 mg per day. Does not make me drowsy during the day (maybe because I have been taking it for so long!). I ran out of it once and after 2 days was in severe pain, back in bed in a fetal position! So resolved never to run out again! Obviously, it was doing something. Give it a try!


                        Meds: Lyrica 150 mg bid
                        Effexor XR 150 mg daily
                        Methadone 5 mg bid
                        Klonopin 1 mg PRN


                        • #13
                          Hi! I started Neurontin in Oct. I started Physical therapy at the same time. I think the Neurontin was part of my incredible improvement. It made me feel dizzy at first--what I thought a hangover would feel like. The nurse told me to just slow down on my dosage ( I was taking 100 mg 3 times a day). My new urologist wants to up my dsoage to 100 mgs 6 times a day. This has been hard because I forget to take it sometimes. The way my brother explained it to me, you have to be careful when you stop this medicine. You should always slowly taper off of it and never go off of it cold turkey. He said that I would notice an increase in pain when it was time for my next dose and might become more irritable at that time also (which I have noticed). It seems to have been a very helpful medicine for me. Hope it helps you.


                          • #14
                            I have just requested Neurontin from my doctor. He has yet to get back to me. I take Vicodin but it doesn't seem to be helping. Since my Uro doesn't prescibe pain meds, I depend on the my GP. What does a pain mangement doctor do?


                            • #15
                              Neurontin ?'s

                              A new dr that I saw for VV prescribed it for me. I took it only for a few days and noticed some dizziness during the day, and didn't like it. It also didn't make me sleepy like they said and so then I wasn't sleeping at night. I usually took elavil at night. I stopped taking it a month or so ago after getting very sick w/pneumonia and sinus/ear infections. I was thinking about starting it again after reading how some of you have had success w/it.

                              How long do you have to be on it to notice a difference? At what dose do people usually feel it working? Does anyone know if you can take elavil at night when on Neurontin?? I also think I read that the dizziness should go away after some time on it??

                              Any info would help, I know I didn't really give it a chance the first time so I'll try it again.