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  • #31
    Sue- that is exactly what I am gonna do. I have already told my husband that I need to go as soon as I can. I am calling tomorrow to get an appointment.
    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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    • #32
      Neurontin

      Janet thanks for your caring thoughts, I think at my age, the dr's more or less just try what the other dr's haven't done yet. I am 71, but I have had second and third and fourth opinions. There is only so much one can do when you are as far gone ad I am with the Pelvic Floor Dysfunction. I had that test twice and all it did is embarrass me more than I already was. But Thank You for your kind words and I know what worked for one may not work for another, that is why it is so important to keep posting about all the changes and what worked for you.
      Wishing you warm and gentle thoughts.
      Take care.
      Sue041
      Sue

      Comment


      • #33
        Lyrica vs Neurontin

        Hi everybody,

        I was also diagnosed with post herpatic neuralgia after a doctor guessed the infection that caused my IC was viral. I was put on Lyrica, but I had waited through 6 months of nerve pain that spread to more parts of my body the longer I waited to do something about it.

        I am now so sick of the Lyrica cost and side effects, that I've been thinking about switching to Neurontin. I've been cutting back on my Lyrica because of memory loss, weight gain, and I had to dumb down my job.

        Thank you, everyone, for sharing your experiences. Lyrica actually helps with anxiety, so it's good to know neurontin can cause it. As for the withdrawals, I've been through horrible drug withdrawals (Paxil) and I don't ever want to endure that again.

        Sigh. I'll keep taking my Lyrica.

        DOES ANYBODY KNOW HOW TO LOSE WEIGHT WHILE ON ALL THESE WEIGHT-GAINER DRUGS? Something that DOESN'T FLARE?

        Thanks!
        Exposure to an unclean hot tub 2-17-07 FIRST UTI
        (Got ringworm-like sores from it before)
        (Someone else got what looked like 'eye herpes')
        (My husband got an ear infection. We were all just sitting there!)
        SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
        TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
        Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
        CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
        MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
        PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

        Comment


        • #34
          Neurontin

          Taramac (sp) and others sorry to hear that you are having such a hard time with the Lyrica,
          I have never taken it. I have been on Neurontin since day of being diagnosed with IC. Like I had said before I take 300mg three times a day, of course I have gained weight, but if I would just walk every day that would help. The more weight I gain the more problems I have with the IC. It seems to put a lot of pressure on my bladder and my spine (back)
          As for there being a get thin quick I do not think there is such a thing, UNLESS you just eat veg all the time and I don;t mean CORN ON THE COB (that is what they feed pigs to make them gain weight) Also I think you would have to take laxatives daily, which I do not recommend because makes you whole system go out of whack.
          Take care and just do the best you can, there is always someone worse off then another person.
          God Bless
          Sue041
          Sue

          Comment


          • #35
            neurontin

            Hi,
            I was wondering if anyone who is using Neurontin had a hard time getting used to it, and/or had side effects such as spacyness, feeling veged out, etc.

            If you did have any of the above side effects, did they go away, and how long did it take?

            Thanks very much,
            Laurie

            Comment


            • #36
              neurontin

              Hi, Bubbe1 --

              My yes, did I ever have side effects from neurontin. I fell down the stairs, almost set myself on fire, and practically did a header into the refrigerator 1 day. I was out of it. The neurologist told me to walk a straight line, and I thought I could do it, but when I got up and tried, it was a complete disaster. In time, the spaciness got a little better, but feeling tired continued thru the entire time that I was taking the neurontin - 3 months. But I am always very sensitive to drugs. That all said, I know that some people initially have the side effects in the beginning but do manage to get passed them and stabalize. Best wishes and prayers on your behalf.
              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

              Comment


              • #37
                Neurontin (side effects)

                Bubbe 1 No I had no reaction at all to the Neurontin, I have been taking 300mg 3 times a day for years and never had any side effects. Sure hope you find something that works for you. Sometimes we must keep trying to see what our body can cope with.
                Take care and keep in touch about what you found that works for you
                Sue041
                Sue

                Comment


                • #38
                  ?neurontin withdrawal?

                  I've been on neurontin for about 1 1/2 months and over the past week quickly increased the dose to try and help the IC pain. Then I started having horrible symptoms: unable to sleep, restless leggs, my whole body restless and just feeling horrible. I called my doctor and immediately stopped it. I don't know if I'm having withdrawal issues or not. I took this med because its supposed to be safe and not a narcotic pain med but this is horrible.
                  The other thing is that my little girl had been sick last week with fever, vomiting. I think I may have gotten what she had and that's adding to this sick feeling. I am nauseated and have a low grade fever.
                  After this is over I am sticking with all natural remedies: tea, accupunture, meditation. I don't know how helpful it will all be but my body does not like this at all!

                  Comment


                  • #39
                    Neurontin (side effects)

                    Virginia213, so sorry to hear you had such a bad time with the Neurontin, But from some of the things you were feeling, it sounds to me that you had a touch of the bug that you little one had. I do not think Neurontin would give you a low grade fever, a upset stomach,but I am just telling you from my taking it for years. I had no problem, but I do know there are ladies that took it and they like a seizure type feeling.Listen to your doctor he knows best how to treat you and with what medications.
                    Hope you are feeling better. Take Care.
                    Sue041
                    Sue

                    Comment


                    • #40
                      Hi Sue041,

                      I've gone the installation route during two time periods. When I did them back in 2003-2005 (on and off) they used DMSO, and I remember one uro had to order in advance. The next time was in the 2010-2011 range, and they did use lidocaine, but I was told that marcaine works much better.

                      I went through all the "usual" treatments of Elmiron, atarax, amyltriptaline and nothing worked...this was my second one trial with the Elmiron, so I believe I've given it a good try. I've just started again on Neuontin (my second go round for that, but the first time was over 10 years ago when I was erroneously diagnosed with Bi-polar)!!

                      I am taking MSContin 60mg twice daily, plus somas 350mg up to three times a day and now the neurontin again, but that's all I'm taking specifically for IC. I recently saw my uro and he has a new ARNP...she seems quite knowledgeable on IC, and I've actually considered trying installs again, but if it's $40 a pop, I am too financially stressed to manage that, along with the monthly or more appts with the pain management doc. Wow, I remember when my former internist actually prescribed a pretty hefty dose of te patch.

                      I was unaware that morphine depletes your potassium...I need to get my last results of my bloodwork from the pain doc!! I hope you had better results if you tried the installations this time!

                      Beth

                      Comment


                      • #41
                        To Cleo130~ if the instills are really working for you, you can have your uro teach you to do them yourself. Its really not that hard and MUCH MUCH cheaper. I can get the supplies to do 4 months of instills (once per week) for about $20-$30. I did find difficulties finding supplies when lidocaine was on national back order, but I'm pretty sure its back again. I stopped doing them bc after about 6 months of them working great for me, they just all of a sudden started making me worse for no rhyme or reason. It started feeling like I was pouring hot lava into my bladder. Hopefully this doesn't happen to you!!! I would def talk to your uro about setting you up for self instills though.

                        Comment


                        • #42
                          $40? That's too much!

                          My recipe: 20cc Marcaine / 5cc Heparin / 5cc Sodium Bicarb. I should sit down and figure out how much each one costs me. But I'd estimate it as under five bucks for sure.

                          Marcaine has gotten a little more expensive recently. It was on back-order from the manufacturer so my mail-order pharmacy was sending me Bupivicaine instead for the past few years. My urologist's nurse said everybody ordered generic and now they're all running out.

                          So my last order was brand-name Marcaine. I paid $75 for 72 vials 10cc each. That's a 90 day supply at 3 instills per week (36 instills) WITH insurance. When I ran out and paid without insurance, I spent $48 and only got 9 vials. Still, that's enough for 4.5 instills.

                          The Heparin and Sodium Bicarb have been inexpensive.

                          I recently looked into the pre-mixed instills called the "Parsons Solution." PD Labs was marketing it to my urologist. It ended up coming to something like $75/month (with insurance) so I bagged that idea. But still, that's convenient and still under $40. What is that $40, your co-pay???
                          Exposure to an unclean hot tub 2-17-07 FIRST UTI
                          (Got ringworm-like sores from it before)
                          (Someone else got what looked like 'eye herpes')
                          (My husband got an ear infection. We were all just sitting there!)
                          SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                          TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                          Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                          CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                          MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                          PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

                          Comment


                          • #43
                            Thanks to Kdub and Tarmarc for the replies. Yes $40 is my co-pay, and it IS too much to have too many appointments. I would definitely try the home method if I try the instills again. Did you have a hard time doing them at the beginning? One thing I always noticed after an instil was the day after recieving one I would be so sore the next day, just really tender. I'm sorry they stopped working for you, Kdub...how discouraging it is to find something that works with this terrible disease and then have it feel horrible after a few months of relief. Are you still taking Neurontin? I am up to 300mg twice a day, and I tried adding the third pill but I felt like I was walking on the moon...fuzzy, off balance, just out of it. I do have Fibro and that has been flaring alot, plus arthritis is pretty much spread throughout my body. I just turned 61 today, and I'm working full time, but there are days that I simply can't make it into work. I even keep a heating pad at the office, and luckily its just me and my coworker in the IT dept. Our office is away from all the main buildings, so we have a great deal of privacy and freedoms most others don't have. We even have our own private bathroom...which is wonderful. I don't have incontinence, but I do get severe urges at times, and without the bathroom right here I don't know what I'd do.

                            I was a dancer/teacher for most of my working life, but having multiple back and neck injuries basically took me out of that. The IC didn't start til I quit teaching. I can't imagine doing it with IC. Well, I'm rambling here, but thanks again for your replies, they were very helpful!

                            Beth

                            Comment


                            • #44
                              Sorry, Taramc...I inadvertantly misspelled your name!

                              Beth

                              Comment


                              • #45
                                Cleo~ The instills were honestly pretty easy for me. I just looked up on YouTube how to cath yourself, and it really helped! Too funny though. My uro also had me do it in the doc office with a mirror before they let me do it at home (kind of awkward! ) My co-pays for instills were $50 and I was going once a week, so that's why I just bit the bullet and learned myself. It is really discouraging they stopped working for me. It seems like that happens with all of the meds I try. I am on a new compounded med called Oxytocin, and its working wonders for me!!!!!! Its a little expensive bc its a compound and my insurance doesn't cover any of it, but it helps so much that its worth it. Its actually a hormone that your body produces naturally...like when breast feeding, having an orgasm, touching someone, the feeling you get when someone smiles at you. Its so cool. They're using it to treat chronic pain, social anxiety, PTSD, sexual dysfunction and so much more. They started testing it for IC patients bc they were noticing that IC women who were breast feeding were reporting that their pain went away during that period. The side affects are all good too! It puts me in a great mood and its helped my sex drive some what. I stopped taking neurontin a looooong time ago. It was making me crazy and I couldn't remember anything. It also made me feel like I had a hangover all the time. Its been my least favorite of all the meds I've tried. You should google Oxytocin and read about it to see if its something that might help you. I bet it would help with the fibro too! Some insurances will cover compounds, but BCBS does not. Its $70/month without insurance. I'd be more than happy to answer any questions you might have about it. I'm a huge advocate for it right now!!

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