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  • Bion's In

    I just had my Bion activation on Friday. I'm still not sure what to expect. Sometimes it seems better and sometimes it doesn't.

    I'm going to remain optimistic though. After all it's only been two days.

    Jean

  • #2
    Hi Jean,

    I justed wanted to wish you the best of luck with your Bion. I also have Bion and it has helped me a great deal with my frequency. Please feel free to write to me anytime (private message also) if you have any questions about Bion or on any other IC related matter I may be able to help you with.

    Take care,
    Karen

    Comment


    • #3
      Hi, Jean, another person who got the Bion in a couple of years ago (actually about 1 2/3 years ago.)

      It helped me a great deal with frequency, and a year later, when it was turned off as part of the trial, I found that my frequency did not go back to its former level, but remained the same as when the Bion was on. I'm not sure why that would be, and the researchers didn't have an answer for me, but I was guessing that maybe it reset the nerves or something so that the lowered frequency remained.

      It did not help me at all with the pain, but some IC'ers do get help with the pain from it (a minority, I think.) They do tell you, it's not for pain, so don't expect pain relief!

      I think you can reasonably hope for it to reduce your frequency, however.

      I was told by the doctor doing the research on this, that it takes a couple of months to reach maximum effectiveness with the Bion. What he explained was that "it takes time for your nerves to get this upregulated, and it will take time to calm the nerves down again..."

      Blessings, and best of luck to you, I'm here to answer any questions if I can,
      Lori

      Comment


      • #4
        Thanks

        Thank you both for the well wishes. Lori, thanks telling me that it might take awhile to reach it's full effect. Sometimes it seems like it's working great and then wham the urgency/frequency seems to increase. I don't feel the stimulator so I can't tell when it's cycling. I guess after all these years you just WANT instant relief. After all I am only on day three now, I'm being impatient I know. I just need to feel the hope is all. When I did my voiding diary I was at 60 +/- voids a day with normal fluid intake and anywhere from drops to max of 6 oz. As a routine I keep my fluid intake to dehydration level to help with the frequency.

        Limiting fluid intake is NOT the way to manage IC and can cause a whole host of other problems. Concentration levels in your urine (including acid) are higher. My doctors are aware of my limited intake and I'm followed very closely.

        I know not to expect pain relief from the Bion and feel that if I can at least get urgency/frequency relief it will be a blessing. And if I can increase my fluid intake it may help with pain as well if my urine isn't so acidic.

        Can either of you tell me if you noticed a gradual level of relief, sudden, sporatic or just one day "noticed" that things weren't so bad? I'd be interested to hear of your experiences. The other thing I'd be interested in knowing is how you manage your intensity level. Where I don't feel the stimulation I can only go by my symptoms or lack of them. I am currently at my maximum level. I've been playing with it and found that when it was at maximum is when I started noticing that I was not having as much trouble, but then when night time rolls around I have an increase in both frequency and urgency - can't turn it up and sure as heck don't want to turn it down. Do you know if the levels that are set initially is where they stay or do the doctor and rep make adjustments as you progress through the trial. Of course I didn't think to ask these things at the time.

        The research team and company rep have all been great and with any luck this will work for me.

        Jean
        Last edited by Jean12; 12-04-2006, 05:14 PM.

        Comment


        • #5
          Jean, when they signed you up for the research, I'm sure they told you that there would be a period of time during the study (45 days) when the Bion would not be turned on, right?

          That period of time comes either at the beginning of the study (they tell you it's turned on, but it's NOT actually on for the first 45 days of the study) or it comes at the end of the study (at the end of one year, when you come for a follow-up at that time, they turn the Bion off for 45 days, and then after 45 days, you come back and they turn it on.)

          I strongly suspect that you may be part of the group that has the Bion turned off for the first 45 days.

          I could EASILY feel my Bion even at the lowest stimulation settings, during the first several months when it was turned on. I felt it turning on and off on a cycle, and it was VERY obvious. Even when I had the Bion on for months at a time, I could still obviously feel it when it cycled on and off, at all but the very lowest setting.

          I'm betting you are in the group that does not have the stimulation turned on for the first 45 days. They try to fake you out and don't tell you when the Bion is on or off - you show up for the visit and you think they are adjusting it, and at first it IS on and you feel them adjusting at different levels - but they turn it off before you leave the office, and it's off for 45 days.

          Anyway, don't lose hope just yet. I would wait 45 days, then go back for your followup (you have another appointment about 45 days after you had your initial appointment, right?) and see if you don't feel the Bion then.

          Blessings,
          Lori
          P.S. They don't have to stay at those levels - mine did, because the implant did not move and the levels stayed the same for me - but you can change them if you would like at each visit.

          I suspect the reason you have yours at the highest level but still do not feel it (and are not getting much relief from it) is because your Bion is not turned on at the present.

          P.P.S. Don't bother trying to ask your researchers/reps if the Bion is on or not - they won't deny or confirm. They can't - they have to try to fool you so that they can have something like a control group. I'm sure they told you all about that - how they will have you do a voiding diary during that 45 days it's turned off, and compare that to voiding diaries you will fill out when it's activated - that is the way they check for placebo response....

          Comment


          • #6
            Hi Jean,

            I totally agree with Lori. I really do believe that you are in the control group and that your Bion has been turned off for 45 days. I was in the control group and was told that my Bion was on. When I called the Bion rep. to tell her that I didn't feel any stimulation at all, she told me that this was normal, and that she couldn't discuss this with me anymore. When the Bion is turned on, even at a very low stimulation level, you can feel it and you can feel it recycling on and off every 5 seconds. I usually set my stim. level at 3.4 and raise it when my frequency feels like it's getting worse. For me, raising the stim. level improves my frequency.

            Do the best you can for the time being. Before you know it, the 45 day period will be over, and they'll be able to turn your Bion on for you. I know how frustrated I was thinking that my Bion was on for 45 days, only to find out that it was never turned on. They keep telling me that it was on, but it wasn't.

            Jean, for me, my improvement in frequency was very gradual. I've had severe IC for the past 17 years and it took a while for me to feel any improvement. My Bion was activated last May, and now after 6 months, my
            frequency has improved by about 50% (from 30 trips a day to the bathroom, down to 15 or 16). Hopefully, it won't take you as long to get relief.

            Happy holidays and please feel free to write to me anytime if you have any questions about Bion. I would love to help in any way I could.
            Hang in there.


            Take care,
            Karen

            Comment


            • #7
              Hi again Jean,

              I forgot to mention that my Bion rep. does adjust my stimulations levels (maximum and minimum) at each visit. Usually, the levels (for me, at least), are set a little higher. At my last visit, my stim. levels were raised from 1.8 and 5.4 to 2.0 and 5.6 respectively. I could no longer feel stimulation at 1.8, so they changed the minimum level to 2.0. This is the lowest level that I can feel the stimulation. The Bion rep. told me that this was normal. I think if my Bion was turned off for a few days, I would once again feel the stim. level at 1.8. I think it's just a matter of the nerves getting acclimated over time to a certain level.

              Take care,
              Karen

              Comment


              • #8
                Thanks again

                Yes, they did tell me that my unit would be turned off for a period of time either in the beginning or the end. I guess I was just hoping that because of how bad things were I'd start off with being turned on.

                When I had the unit inplanted and they were trying to find the correct placement their machines said it was placed correctly, but I wasn't feeling anything. When they did the initial evaluation I remember very distinctly feeling the cycling.

                During the implant as they moved it around and found the place where they thought was the correct placement, I felt no stimulation at all. I guess that's why I was thinking that the possibility exhisted that mine may be turned on but not placed properly or possibly not feeling it or it. I guess only time will tell.

                When the rep was calibrating everything and setting my levels I never felt so much as a tingle or a buzz either. So I truly don't know if my device is placed properly, turned off, turned on or what.

                I'm just so miserable, I missed work yesterday and today because the frequency and urgency is so bad and it's pretty discouraging to think that this could be the best it gets. I hope you are both right that I'm just not turned on.

                I had the implant on the 13th of November, went back for a follow up and to get my charging station and activation on Friday the 30th. I go back again on the 15th of December for another follow up and then on the 19th of January. After the January appt I don't go back again for three months.

                Thank you for your support and replies. I'm very discouraged at this point and hate feeling miserable.

                Jean

                Comment


                • #9
                  Hi, Jean, I'm sorry you aren't feeling so great right now. Please hang in there(I know it's hard) because I'm thinking that after 45 days, things will get better...

                  When your Bion is working, it SHOULD feel like that initial evaluation where you noticed a distinct cycling off and on. At least, that's what I have felt, and that's what everyone has felt, that I've communicated with.

                  In fact, when they set the levels of stimulation for me, they would take it to the point where it was literally a little painful for me - the stim was a bit too high - and I would almost jump out of the seat - and they would turn it to one setting below that point where I was almost jumping out of my seat. So it's very hard for me to imagine that they would take you to the point of pain - as they did me - and that you wouldn't feel a thing at all. I'm really convinced that after your first initial evaluation, you never had the Bion turned on at all. It's just been off this whole time so far. How many more days do you have left until the 45 days are up? I hope not too many days. I know it's so hard. Hopefully the time will pass by quickly and after it's turned on, you will start getting relief. Please stay on the boards and let us know how things work out for you.

                  Blessings, and hang in there a little longer,
                  Lori

                  Comment


                  • #10
                    Thanks Again

                    Thank you for the continued encouragement. I do hope that your are right. I had the implant on November 13 so my 45 day appointment will be January 19th. Because of the +/- factor my two week appointment actually went to 19 days and if I remember correctly it is 45 days from your two week appt, not implant date.

                    I was somewhat sedated but I do remember at one point as they were varying the intensities I quickly told them "pain, pain, pain, pain, pain" that was in the OR, not the follow up appt. As I said, I felt nothing when we got my battery charged and they were fiddling with things at the follow up. I also was thinking that it may be turned off because it only takes me around 5 minutes to charge my battery and it would make more sense that if the thing were cycling it would be using more battery power, particularly if I had it at a higher intensity level.

                    I made it to my second job this afternoon and I'm doing somewhat better. Had to reduce my liquid intake, use heat, pain meds etc. I'm trying to stay positive and the support is definately helpful. And now that I've cut my work schedule down from three jobs and 50-60 hours to two jobs and 40-50 hours I'm hoping I can stay on the board a little again.

                    Thanks again for the support and info.

                    Jean

                    Comment


                    • #11
                      Hi Jean,

                      I experienced the same thing at my Bion visits. They keep raising the stim. level and I have to tell them when it gets really painful and then they lower one level down. It does get painful at too high a stim level, and this really leads me to believe that your Bion has to be turned off. I agree totally with Lori.
                      The fact that it only takes you 5 minutes to recharge Bion also supports our strong belief that Bion is off. My Bion is on all day long at a stim. level of 3.4and when I recharge at night, it takes me at least 25-30 minutes to reach a complete charge. So if you have Bion on all day at a high stim level or even at 3.4, like me, then it should take at least 25 minutes to charge completely.....5 minutes doesn't sound right at all.

                      Please don't get discouraged with Bion. It has so much to offer. I tried just about every IC treatment out there and every one failed to give me any relief with my severe frequency until Bion came along.

                      I know how you feel, I was in the control group too and wanted immediate relief from my frequency. I told my research coordinator that I was very discouraged and disappointed. She keep telling me to "hang in there" and I did. She know I was in the control group but she couldn't tell me.

                      Please write to me at any time. I'm always for you.

                      Take care and Happy Holidays!

                      Karen

                      Comment


                      • #12
                        What exactly is Bion?

                        Comment


                        • #13
                          Bion

                          The Bion is a small, battery operated micro stimulator. It is about an inch long and about as big around as the inside cartridge of a pen. It is inserted along the pudendal nerve, the nerve that supplies impulses to the bladder. The theory and hope is that when activated the Bion sends electrical stimulation along the nerve path. The signal disrputs the nerve's own signal so you don't feel the urgenc/frequency as often. The Bion is not a device to treat pain, only urgency/frequency.

                          Jean

                          Comment


                          • #14
                            Hi, Jean, just wanted to second the part about your Bion being so quick to recharge - the ONLY time it only takes me about five minutes to recharge is when my Bion is off (I have had it off now for several months, because I am on CyA and want to make sure that it's the CyA giving me a remission and not the Bion) because if it's on, even at a lower stim level, it takes me at least a good ten minutes to recharge. I usually take anywhere from 10-15 minutes per night to recharge because my stim is set at a lower level (1.2 is the highest I can go) because my nerves were very sensitive to the stimulation.

                            I'm just convinced that you are in the group that does not have their Bion turned on for the first 45 days. You are correct in that they are measuring the 45 days from the two-week appointment. So mark that day on your calendar...I'm thinking they probably have you scheduled to come back around then for a follow-up, am I right? Anyway, when you go back for that follow-up following the 45 days, THAT is when they will turn the Bion on and you will start getting relief. I know that I probably didn't get full relief for a month or so...can't remember now....but I know that by the end of the week, I was feeling a major difference, so....just hang in there, things will get better...the time will pass by quicker than you think....

                            Blessings,
                            Lori

                            Comment


                            • #15
                              Lori and Karen

                              Thanks so much for your quick responses and support. I'm going to hang in there and your input helps put things in perspective again. January 19th is the day 45 visit, that's only 45 days from today, but what the heck, who's counting anyway. I've been living with this since I was in my early teens and I'm 48 now, so another 45 days isn't going to kill me, especially with the prospect of improvement.

                              Jean

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