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Daily Interstim adjustments?

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  • Daily Interstim adjustments?

    (Sorry, I know this is the wrong place to post this, but the regular one isn't showing up so I assume it's in the process of moving.)

    Medtronic tells me that Interstim patients typically adjust the intensity of the Interstim throughout the day. I got the impression from my uro that I should find the lowest setting where it works & basically leave it there. I recall that one or more people on the boards don't even bother carrying the patient programmer during the day & just leave the setting alone. Interstimers, what do you typically do?

    I'm trying turning it up at night to see if it'll help with the nocturia. It's too soon to tell for sure.
    IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

  • #2
    I wish i knew what to tell you maybe one of the others who has it will come alone soon and help you out. Jess and Cindy is two of the people i know that has it so hopefully they will come alone to help you out. Jill or Donna may even know but one of them will be bye shortly i'm sure.
    Good Luck hon i'm sorry I couldn't help frown
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.

    I have IC, but IC doesn't have me anymore!


    • #3
      Hi Rjyoon,

      I don't adjust the stim everyday, just occasionally, and I do leave it at a setting that is comfortable. I have it on to where I barely can feel it. If I move my foot I can feel the stim, so make sure you know it's on LOL.

      Sometimes I need to turn it up, like when I'm flaring, and then I'll turn it back down. Just tune it to where you are comfortable, it will be good enough.

      Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


      • #4
        I adjust mine constantly. When I'm sitting down I can turn it up a lot higher but then when I try and walk with it turned up high, the stimulation gets really uncomfortable so then I have to turn it down to low. And like at night, I usually turn it up a lot because that's when I have a lot of my frequency problems. I personally like adjusting it, because when I'm not having a bad day, I don't want it on strong. My uro has always told me it was normal to adjust it a lot.



        • #5
          My doctor told me the same thing. Find the lowest and comfortable stimulation that works the best for me. However, they are not going to experience what we have been through unless they have one inside of their butt. For me, I can leave the same stimulation for a whole day. But sometimes, I do need to adjust my stimulation based on how I feel about it. The stimulation is stronger after I take a bath or work out. Besides, I found out when I had a cold/flu, the same stimulation I had regularily was stronger.
          Currently, I try to turn it off before I go to bed and turn it on after waking up. With the stimulation, I am not able to have normal bowel movement. I need to take stool softner every other day.


          • #6
            I never carry my remote with me and very rarely turn it up or down, I turn my device up to where I feel it and then down to i don't or just barley.. My dr said.. rule of thumb. you don't need to feel it for it to work..
            If the magnets are turned on, on your device certian things can change your stimulation.. Turning you device off and on can change you stimulation... and last but not least weight gain and lose can change your stimulation..
            'The will of God will never take you where the Grace of God will not protect you.'


            • #7
              Hi Ryjoon,

              Thanks so much for your post (I've had the same question myself, but didn't think to ask for some reason . . .). Thanks also to everyone for your answers too! You are all so very helpful

              Also, Ryjoon, I'm thinking that my last pm to you might have been lost in the transition, so I wanted let you know that I received yours, to say hello, and to tell you that I'm hoping your test results come back asap!

              Best of luck with everything and best wishes, little bear


              • #8
                When I had mine the only time I ever adjusted it was if I had bumped my fanny or ran into something. I didn't carry my control box with me either (kinda stupid)

                Both my dr's told me the same thing....find a setting that's comfy and leave it alone. It doesn't have to be turned up full blast in order for it to do it's job.

                wishing you the very best:blink:
                Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".