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  • #16
    I started Neurontin when I was first diagnosed in August 2010. I started at 900 mg at bedtime, and it made a huge difference in terms of sleeping. I only got up once or twice instead of every 1-2 hours. It helped with the frequency in the daytime as well, but at first I did feel a little sleepy. Here I am a year and a half later and am up to 2700 mg. a day. I take two every four hours and three at bedtime. At this point I'm not sure it is doing a whole lot anymore, but when I get close to needing my next dose I can really tell, because the nerves in my bladder start complaining loudly. My biggest problem is severe pain, and the neurontin does not help a lot with that for me. I have always had to take a narcotic for pain. I try to limit myself to 10 mg. a day of the Percocet, split into two doses with the neurontin, and it helps enough that I can function. But the pain is never gone unless I am asleep. The neurontin used to help with sleep, but like pretty much any drug your body builds a tolerance to it, and then you have to take more. Now I have to take Ambien in order to sleep at night, and a muscle relaxant to help with bladder spasms. I'm not sure which is worse, having IC or having to take all of these prescription drugs constantly. Between the drugs and menopause, I have given up on feeling anything close to normal. I've had to learn to be happy to function at all, and am thankful to God for my family for their love and understanding and for doctors who are compassionate enough to try to help me. Continuing to pray for a cure, that is what we all really need

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    • #17
      My experience with Neurontin -- not good.

      I had shingles in Nov 2011 which went into post herpetic neuralgia. To get rid of the pain, I was prescribed Neurontin - a slow build-up from 300 mg/day to 900 mg/day. YES, it helped my post herpetic neuralgia, but if I had it to do over again, I would not take this drug. From the 1st day that I started to take 900 mg I started having an IC flare. The drug makes you sooooooo out of it though, that you can ignore certain things. After being on it for approx. 2 months and with my post herpetic neuralgia under great control, I started the taper down. As soon as I dropped to 2 pills a day I was able to make a direct correlation between taking the pill and 1 1/2 hours later terrible burning in my bladder and IC flares. I was in agony and had to dump off the drug sooner than the normal taper off period (with the approval of my neurologist). Did quitting the drug help my IC flares and burning bladder, vulvar pain, rawness and stinging everywhere down there? No, it did not. Additionally, I had major anxiety attacks while on it (I never have anxiety attacks so this was a new experience each and every day), was like a zombie the other half of the time, and the withdrawal from going off of it has been brutal -- including severe muscle spasms that come every few seconds as soon as you lay down. No sleeping for weeks.

      At this point -- 4 months after I first contracted shingles I am now dealing with major IC and VV. I had VV surgery 9 years ago and had never relapsed. I am in the fight of my life -- been thru Tramadol, graduated to Vicodin and muscle relaxers. I hate drugs and it's been real ugly.

      I know some people are really helped by Neurontin and I praise God for their success, but it surely took me down a path that I wish I had never taken.
      MEACH


      "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." Mathew 11:28-29

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      • #18
        Meach, I've heard that neurontin can produce a nasty withdrawal
        Last edited by Briza; 08-13-2019, 06:06 PM.

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        • #19
          Neurontin

          Hello, I have been on Neuron-tin from day one when I went to pain therapy, I take 300mg 3 x a day, I also take oxycodone, and have the fentynal patch and a pain pump implanted.This is my second pump, my first one was in for about 7 years and then something happened and I had to have it turned off for a few months and was hospitalized for about a week while they were deciding to do with me. In 2007 I got my old one taken out and a new one put in. Yes I still have days where I hurt so much, they say it is turned up as far as they go, but I have all my papers when I had my first one and it was much higher, but I did not have the fentynal patch. They want to try the installations again, I sure hope it don't turn out like before, it ran out as soon as they put it in. Excuse the spelling it it 1:33am and I am getting tired. I had a friend with IC and she was on Neuron tin and it is a good thing her mother came to check on her, she was sitting at the table with her face in her cereal bowl. It is really weird how different medications work differently on other people.
          Take care and God Bless Us All
          Sue041
          Sue

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          • #20
            Neurontin

            Hello. I have been taking neurontin for several years. It was not prescribed when my IC was first diagnosed. After 1 or 2 hydro/DSMOs, my uro suggested it when I was having a terrible flare up. I had another DSMO scheduled. I was able to cancel the procedure due to the addition of the neorontin. I was originally taking 300 mg 3x/day. Due to increasing pain issues, I recently began 600 mg 3x/day.It does make some people sleepy, but I have been okay with the dose. I do feel like I need a nap throughout the day but I am on a lot of meds. Bottom line-the trade off for the neurontin vs. A hydro/DSMO was worth the trade. Also, the continuation of the drug has been fine. I always recommend finding a good pharmacist if possible. It is much quicker to get info on your meds.

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            • #21
              Neurontin

              Hello, I was put on Neurontin the very first day I went to Pain Therapy along with Atarax, Oxycodone and later the patches and finally the pain pump. The last URO said there is nothing they can do for me except take my bladder out and I do not want that, so I said I will try the installations, but if they run out as fast as they put it in and If I have horribly pain like the few years back I did, I will no more do the installations. I am hoping that they use some lydocane along with the Heparin and Elmiron. I take 5 potassium pills a day because the morphine depletes the potassium and then I have more problems.
              You know there is always someone worse off than I so I just try to roll with the punches although sometimes it is really hard.
              Forgive the spelling. If anyone has any questions I will be glad to help.
              Take Care.
              Sue041
              Sue

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              • #22
                neurontin

                Originally posted by sue041 View Post
                Hello, I was put on Neurontin the very first day I went to Pain Therapy along with Atarax, Oxycodone and later the patches and finally the pain pump. The last URO said there is nothing they can do for me except take my bladder out and I do not want that, so I said I will try the installations, but if they run out as fast as they put it in and If I have horribly pain like the few years back I did, I will no more do the installations. I am hoping that they use some lydocane along with the Heparin and Elmiron. I take 5 potassium pills a day because the morphine depletes the potassium and then I have more problems.
                You know there is always someone worse off than I so I just try to roll with the punches although sometimes it is really hard.
                Forgive the spelling. If anyone has any questions I will be glad to help.
                Take Care.
                Sue041
                Hi Sue,
                This is off topic.
                I just read your post and saw that you said morphine depletes potassium.
                If you don't mind my asking, how did you find out about that?
                The reason I'm asking is that my husband is going to start morphine. He's been taking Methadone for years for chronic back pain, but it's not helping anymore, so his new pain doctor said my husband could try morphine instead. This doctor never said anything about Morphine causing loss of potassium.

                I hope you can find some answers for your pain.

                Thanks,
                Laurie

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                • #23
                  neurontin

                  P.S. Have you asked your doctor if you could try some other med. mixtures in your instills? There are lots of combinations, so there might be one that works better for you.
                  I also had trouble with my instills leaking out, but that seemed to get better over time. One thing the instill nurse told me to do was to lie on my side for a while on the table, after the instill. That seemed to help some.

                  Good luck,
                  Lauire

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                  • #24
                    Neurontin (Off Topic)

                    Hi Bubbe1, the one nurse at the family doctor practice told me that when I had blood work done it showed that my potassium was very low and so they put the potassium up. I take the MEQ10, I take one in the morning and two at lunch and two at supper. Ask your doctor or nurse, this is all I know what they told me.
                    Hope things work out for your husband and yourself.
                    Take Care
                    Sue041
                    Sue

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                    • #25
                      what is wrong with me

                      Thanks, Sue.

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                      • #26
                        I started it 2 weeks ago for another condition and I don't have any side effects. My bladder is doing well unless I eat something that is not IC friendly.
                        Diagnosed in July 2003

                        Meds and supplements:

                        Desert Harvest Aloe Vera
                        Prelief as needed
                        Megafood multi
                        Fish oil (Nordic naturals)
                        Probiotic (Mega food mega flora brand)
                        Vitamin D (Carlson's solar gems 4000 IU)




                        Favorite Quote:

                        "Dance as if no one were watching, sing as if no one were listening, and live every day as if it were your last."

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                        • #27
                          Omg!

                          OMG! Please do not put this in the recall section lol! I almost had a heart attack when I saw this; I would not be able to survive without it, and I do not need anything else going on right now, hahaha! You really scared me!
                          Tierney
                          Message me and add me http://facebook.com/tierneybrielle.

                          Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

                          Do you have a question? Feel free to ask me anything; I am an open book!

                          I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

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                          • #28
                            Lyrica-the name brand drug for Neurontin

                            I couldn't take Neurontin because it made me feel as if someone had beat the you know what out of me. I was so sore all over. I take 150 mgs of Lyrica 3 times a day. It effects my short term memory and causes low energy but the side effects for me are worth it. Oh, It also has caused my eyes to worsen. I now have to use magnifying glasses to read but part of that could be from just getting older.
                            GO TO: IC-talkblogspot.com
                            [B]CURRENT DIAGNOSES AND MEDICATIONS
                            lumbar pain,depression,periphreal neuropathy,Insomnia,IBS
                            for pain-tramadol ER 200 mgs (once a day),for break-thru pain-talwin(as needed),for periphreal nueropathy-Lyrica 150 mgs (3 times a day),for insomnia-ambien10mgs,for hot flashes- estradiol (estrogen),for IBS-Questran (one packet a day),for depression-paxil (80 mgs)=two 40 mgs a day

                            SURGERIES-
                            *Bladder and Urethra removed (Radical Cystectomy)-August 2012
                            *Vaginal Prolapse surgery, ovaries removed and Interstim removed 2012June 2012
                            *Cauterization of the bladder lining-1992-i don't know the technical term
                            *Bladder distension and cauterization-1992
                            *Cystocopy-1992
                            *Gallbladder removal-1995-gall stones
                            *Hysterectomy-1998-still have ovaries
                            *Interstim trial-2002
                            *Interstim implant-2002
                            *Trial pain pump did not work
                            *spinal injections-2009 (once with 1 injection and a second time with 6 injections)

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                            • #29
                              Neurontin

                              Bamagirl---Are you serious about your eye sight. I think you should go to see your eye doctor immediately. Maybe your family doctor also. Do they know now that you starter the other medicine that you are having problems with your eyes. Please go see your doctor like now so they can find out if it is the medicine, or just your age. You do not want to loose your eye sight, for your own sake go to a doctor before it is too late.
                              Take care and God Bless.
                              Sue041
                              Sue

                              Comment


                              • #30
                                Neurontin (Off Topic)

                                Sue,
                                I am very sorry to hear about your condition. Have you tried a second opinion? I have noticed more pelvic care clinics (some hospital based),. I have not tried any additional dr. I am happy with my uro. However if he suggested the next step was removal of the bladder, it may be worth it. Based on that and the pain patch, I realize that you are truly in need of help. I only wish that there was a clear path to recovery. It seems like we just guess and try a lot. I know how disappointing it is when it only makes it worse. Best wishes to you. I truly hope that you can find relief in a different manner for your next step.

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