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  • #46
    By the way cleo...Happy Birthday! My mom turned 60 today

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    • #47
      My urologist didn't bother to show me how to do instills. I asked for them and was sent home with a pamphlet. The catheter was too large (I use pediatric size 8), and the pamphlet seriously showed the hole in the wrong place! I nearly poked a new hole in myself before giving up. I had my husband find the urethra after that until somebody said to try doing it in the bathtub with a mirror. I started doing it that way and putting the cath in first, letting it dribble, then attaching the cath-tip syringe. That worked great so I stuck with it until I was able to do it by feel. Now I do it standing over the toilet with one leg up - totally by feel. I am always comforted by the presence of those instills just in case I need help getting to sleep with the pain. Or if I'm going to a restaurant of a movie. That kind of thing.
      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

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      • #48
        Neurontin and Instalations

        Hello, I do not get any relief from the installations, as a matter of fact they make me worse. I have no problem with the Neurontin what so ever.

        Ii am so glad that the installations are working for you guys. And finding out how to do them your self is really better, you can do them in your own home whenever you feel it is necessary

        I hope I answered the right question, I am trying to get better each day.
        I have lost 24 pounds in a month and the doctor said he don't think it is cancer, (then what is the matter)
        Take care and you are all in my prayers.
        Sue041








        Originally posted by Taramc View Post
        My urologist didn't bother to show me how to do instills. I asked for them and was sent home with a pamphlet. The catheter was too large (I use pediatric size 8), and the pamphlet seriously showed the hole in the wrong place! I nearly poked a new hole in myself before giving up. I had my husband find the urethra after that until somebody said to try doing it in the bathtub with a mirror. I started doing it that way and putting the cath in first, letting it dribble, then attaching the cath-tip syringe. That worked great so I stuck with it until I was able to do it by feel. Now I do it standing over the toilet with one leg up - totally by feel. I am always comforted by the presence of those instills just in case I need help getting to sleep with the pain. Or if I'm going to a restaurant of a movie. That kind of thing.
        Sue

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        • #49
          Thanks so much....I guess I could be your mother as I just turned 61!

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          • #50
            Instills and neutontin

            Thanks so much for the info on your experience with the instills. I had to laugh when you said you nearly poked a new hole!! I have lidocaine that I can put in that area and I know I have missed a few times! I'm sure I would need some instruction and a mirror in order to do the instills by myself. I always have some urine that they have to remove before they do the instill, so I know that would be my first issue. I'm glad to hear you've had good results with the pain, as pain is definitely my main issue.

            I've been on neurontin at 2 times a day for about 2 weeks or so and I am getting some pain relief. I had tried to add a third pill but I felt so out of it that I've been staying at two 300mg pills. I will probably try the third later this week, but I am definitely feeling like the neurontin is helping. I am truly amazed, as I am a skeptic when it comes to pain relief. I have developed a tolerance to pain meds over the years. I am struggling with my MS Contin at 60mg twice a day, as I've been on that amount for about a year and my body is used to that amount. I've tried Opana but had so much difficulty getting it, plus the cost is so much more that the $10 I pay for MS Contin. I take so many different prescription meds as well as over the counter meds that used to be prescription only. I can barely afford what I'm taking now, so I'm trying to stick to generics whenever possible.

            I think my next step as far as IC is concerned will be the instillation route. I did the Medtronic trial and it did nothing for the pain at all. I've tried Elmiron and the other usual meds two different times and they simply don't work for me.
            Originally posted by Taramc View Post
            My urologist didn't bother to show me how to do instills. I asked for them and was sent home with a pamphlet. The catheter was too large (I use pediatric size 8), and the pamphlet seriously showed the hole in the wrong place! I nearly poked a new hole in myself before giving up. I had my husband find the urethra after that until somebody said to try doing it in the bathtub with a mirror. I started doing it that way and putting the cath in first, letting it dribble, then attaching the cath-tip syringe. That worked great so I stuck with it until I was able to do it by feel. Now I do it standing over the toilet with one leg up - totally by feel. I am always comforted by the presence of those instills just in case I need help getting to sleep with the pain. Or if I'm going to a restaurant of a movie. That kind of thing.

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            • #51
              Sue,

              Please keep us informed about the weight loss. I did lose quite a lot of weight about two years ago, but it was over several months. At the time I was really happy as I was back to my usual weight. Unfortunately I gained it all back when I took Cymbalta, so I had to discontinue taking it. It really helped my depression, which in turn helped ease the pain a bit.

              I hope you find the cause of the weight loss and that it is nothing serious. I know how frightening medical issues can be. I will be thinking of you and saying a prayer.

              Beth

              QUOTE=sue041;618264]Hello, I do not get any relief from the installations, as a matter of fact they make me worse. I have no problem with the Neurontin what so ever.

              Ii am so glad that the installations are working for you guys. And finding out how to do them your self is really better, you can do them in your own home whenever you feel it is necessary

              I hope I answered the right question, I am trying to get better each day.
              I have lost 24 pounds in a month and the doctor said he don't think it is cancer, (then what is the matter)
              Take care and you are all in my prayers.
              Sue041[/QUOTE]

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              • #52
                Neurontin for years

                Originally posted by cleo130 View Post
                Sue,

                Please keep us informed about the weight loss. I did lose quite a lot of weight about two years ago, but it was over several months. At the time I was really happy as I was back to my usual weight. Unfortunately I gained it all back when I took Cymbalta, so I had to discontinue taking it. It really helped my depression, which in turn helped ease the pain a bit.

                I hope you find the cause of the weight loss and that it is nothing serious. I know how frightening medical issues can be. I will be thinking of you and saying a prayer.

                Beth

                QUOTE=sue041;618264]Hello, I do not get any relief from the installations, as a matter of fact they make me worse. I have no problem with the Neurontin what so ever.

                Ii am so glad that the installations are working for you guys. And finding out how to do them your self is really better, you can do them in your own home whenever you feel it is necessary

                I hope I answered the right question, I am trying to get better each day.
                I have lost 24 pounds in a month and the doctor said he don't think it is cancer, (then what is the matter)
                Take care and you are all in my prayers.
                Sue041
                [/QUOTE]
                Hello cleo130, I got a email saying that someone wanted to know about Neurontin, I have taken it for over 10 years, I take 300 three time a day with no problems. I am so happy to hear that some of you have found how to help with the relief of bladder pressure and pain doing the installations yourselves. Yes indeed you save a lot of cash when you do them yourselves and at what ever time suits you. I hope and pray we can all hold on and help each other. Tomorrow I go see the Neurologist and it says I have a 50minute appointment. I am not sure what they have in mind for me. Take care and prayers to all.Sue041
                Sue

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                • #53
                  Interesting and informative thread ladies! I'm suffering with anxiety and depression right now along with this flare (everytime I flare, I get huge anxiety) haven't had a flare in a while and dumb me stopped taking all meds thinking I was fine. HUGE mistake. I have pressure in the bladder and I feel everything in my urethra. I'm on a high dose of amitriptyline (100mg) and taking a Xanax pill per day. I'm thinking the amitriptyline is the drug that works for me but I don't get relief for over a month or so. So in the meantime, I just suffer. I am super tired starting back on all these meds and I keep having pity parties for myself. I had 5instills which didn't work for me (I was so bummed cuz they say it helps like 80% of people. ) no one has ever mentions neurontin or oxytocin. I'm doing a lot of praying for comfort because I don't handle this kind of stuff very well.
                  symptoms when in a flare:

                  I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
                  *I have a fibroid on my uterus near my bladder.

                  Medication
                  100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
                  Flexoril 10mg (doesn't work)
                  Hydrocodone 5/325 PRN
                  Cetalopram 40mg *severe anxiety over flare

                  Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
                  My urethra are very tight.

                  currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

                  I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



                  find me on Facebook! Brandy Schildknecht Covington

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                  • #54
                    [FONT=Book Antiqua][/FONT
                    Sue

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                    • #55
                      QUOTE=sue041;619334][FONT=Book Antiqua][/FONT[/QUOTE]
                      Hello this message is for Beth and others, I am not sure to click on the right thing to get the messages like answers.what I am trying to say is if the installations work then stick with it. I also want to tell you all that I am the person with the implanted pain pump it has been 6 years for the second pump and NOW THE PAIN DOCTORS SAID THEY FOUND OUT THAT THE PUMP CANNOT BE UP ANY STRONGER SO THE PUMP WAS USED TO THE MAX. AND NOW I AM STUCK WITH IT AND THEY HAVE TO USE X-RAY TO FIND THE PORT AND FOR GETTING IT FILLED TWO TIMES IT IS OVER $9.99 DOLLARS TO FILL IT. THINK TWICE ABOUT GETTING ONE. SEE THE SCAR TISSUE IS GREATER ON TOP OF THE PORT AND THAT IS WHY THEY NEED TO USE X-RAY EACH TIME. God Bless Us All. Keep in touch, oh and yes I am still loosing weight. I have no answers except that my husband is 80 years old and very sick he has pulmonary phluebitus and on oxygen always.(can't spell it but it is scar tissue in his lungs)
                      Sue

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                      • #56
                        Originally posted by sue041 View Post
                        [FONT=Book Antiqua][/FONT
                        I did not put the price down, it is $999.00. I cannot afford that. Sorry for the mistake in the above reply.
                        Sue041
                        Sue

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                        • #57
                          I just started Gabapentin which I believe is the same thing. I couldn't read all the posts just now but thanks everyone! This gives me hope. I am feeling better on it but it makes me sooooo tired I have to sleep. So I didn't take it today, I'm working. I'm hoping in time I won't be so sleepy on it.

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