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Thread: causes of disreflexia

  1. #11
    are you on any other medications for spasms like baclofen? Do you have nerve pain that accompanies the spasms?

    pbr
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  2. #12
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    Quote Originally Posted by SCI-Nurse View Post
    are you on any other medications for spasms like baclofen? Do you have nerve pain that accompanies the spasms?

    pbr
    I'm on 20 mg. of baclofen, 3x a day.
    when I have spasms that I'm aware of there's no pain.
    "courage is fear that has said its prayers"

  3. #13
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    Quote Originally Posted by gjnl View Post
    With a supra pubic catheter, you should be taking a fraction of the amount of Oxybutynin you would be taking to have the dementia concern that others have who are taking the drug at full dose.

    Did Myrbetrig help at all? Why did you just take a 25 day course?
    this was my first time to take this drug, so I started w/a month supply. My dr. told me to double my dose if I didn?t see a change after about a week. My response was puzzling-after several days the leakage lessened for a few days and then became much worse than normal?then lessened again. No rhyme or reason. I?m hesitant to take any more of it because it is VERY expensive, but I guess that?s what I might have to do.

    I was on 10 mg. of oxybutynin a day, and the jury still seems to be out as to whether it and other drugs of this family cause dementia in those who are not yet elderly (including me), or cause or worsen it in those who already have it. this has bothered me for years!!
    "courage is fear that has said its prayers"

  4. #14
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    gabapentin, baclofen, nortryptline, zoloft, pericolasce.

    here's the looong story about me and anticholinergic medications...

    at one point, years ago, I was on 3 anticholinergic drugs at the same time (I?d heard about the cognitive side effects but didn?t know of other alternatives).

    In more recent years I was ?just? on Detrol, until I took myself off of it when the cost went WAY up and I got spooked by the dementia possibility.

    My dr. put me on oxybutlin a few months later after assuring me that this family of drugs only made dementia worse in elderly patients that already had it.

    Then, I read about how oxybutlin is the worst offender because the molecules are smaller and enter the brain more readily, and panicked once again and went off of it.

    Then I was introduced to myrbetriq, which is from a totally different ?family? of drugs that has no cognitive side effects.
    this was my first time to take this drug, so I started w/a month supply. My dr. told me to double my dose if I didn?t see a change after about a week. My response was puzzling-after several days the leakage lessened for a few days and then became much worse than normal?then lessened again. No rhyme or reason. I took the last of it last Friday and have had 4 good days. However, I?m hesitant to take any more of it because it is VERY expensive, but I guess that?s what I might have to do.
    "courage is fear that has said its prayers"

  5. #15
    Thanks for the information you provided. Myrbetriq is better with respect to less side effects, but it is not completely full proof with preventing bladder spasms.

    I would recommend a combination of the catheter mentioned above and the myrbetriq you are currently taking

    If your symptoms remain I would recommend a neuro-urologist - it may take a while to find one - a urologist who specializes the effects of the nerves on the urological system.

    pbr
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  6. #16
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    Quote Originally Posted by SCI-Nurse View Post
    are you on any other medications for spasms like baclofen? Do you have nerve pain that accompanies the spasms?

    pbr
    I think I misunderstood your question before-my spasms in my hands/legs I can feel, w/no pain, and sometimes I feel a kind of (painless) twinge or contraction in my lower abdominal area followed by sweating.....could this be a bladder spasm?
    "courage is fear that has said its prayers"

  7. #17
    i have the same issue with bladder spasms and lots of sediment and mucus, which causes clogging.

    i do botox injections for bladder spasms, but still get them. i'm gonna try that catheter as well. my doctor wants me to go bigger, currently use 22fr he wants me to go to 24fr. i dont think that'll solve the clogging issue

    have you thought of botox OP?

  8. #18
    Quote Originally Posted by yiannit View Post
    i have the same issue with bladder spasms and lots of sediment and mucus, which causes clogging.

    i do botox injections for bladder spasms, but still get them. i'm gonna try that catheter as well. my doctor wants me to go bigger, currently use 22fr he wants me to go to 24fr. i dont think that'll solve the clogging issue

    have you thought of botox OP?
    If you want to try the Poiesis Duetter, don't size up to a 24fr stoma. Currently, the largest catheter the company offers is an 18 fr. Several people on the forum have sized down to an 18fr from a 20fr or 22fr without much difficulty.

  9. #19
    Quote Originally Posted by gjnl View Post
    If you want to try the Poiesis Duetter, don't size up to a 24fr stoma. Currently, the largest catheter the company offers is an 18 fr. Several people on the forum have sized down to an 18fr from a 20fr or 22fr without much difficulty.
    Yup I emailed them and she told me that 18 is the largest they have and they'll be going to 20 in November . How hard would it be going from 22 to 20 without any leakage through the stoma

  10. #20
    Quote Originally Posted by yiannit View Post
    Yup I emailed them and she told me that 18 is the largest they have and they'll be going to 20 in November . How hard would it be going from 22 to 20 without any leakage through the stoma
    You could go from 22fr to 18fr right now with very little difficulty. That stoma closes up so quickly around the catheter,

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