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Thread: OT September Chit Chat

  1. #271
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    Oh gosh Ann you just made me so hungry for some really good food. I have been doing alright with food, but not like I usually eat and I miss food like that.
    Virginia

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  3. #272
    Distinguished Community Member SuzE-Q's Avatar
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    Virginia, so glad your brother and his wife are doing much better! So sorry you are still suffering with the shingles.

    Sunshine - ouch! I'm so sorry this has become such an issue and meds are not helping. Hoping the increased dose will calm the spasms. Would a later nightly dose of MMJ help increase its availability around the problematic time?

    Cherie, good luck with the taper. My doctor told me the reported effects of benzos on cognitive decline were not accurate, but I forget what he said the study actually indicated. Still, it's best to be off it, if possible. I'm down to .5 mg now and hoping too that I'll soon be free.

    Happy Anniversary, ANN!

    Hi renee!
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    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  5. #273
    Distinguished Community Member Cherie's Avatar
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    Sunshine,
    Have you and your doc had a discussion about a baclofen pump? It seems to be moving in a direction that this might make more manageable.

    SuzE-Q,
    Tolerating the 1.5 mg and will drop to 1 mg in 5 days when I refill my meds again provided things are still going well. The side effects of dose change tapered down after the first three days on the lower dose but I don't want to go too quickly and have to snap back to higher dose.
    Last edited by Cherie; 09-29-2018 at 08:01 PM.

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  7. #274
    Distinguished Community Member Sunshine's Avatar
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    I did what neuro said. I moved my 8 pm Baclofen and Tizanidine to 9pm and added anothr 20 mg Baclofen and another 4 mg Tizanidine in top of ththe usual 8 pm for a total 30mg plus 8 mg at 9 pm, nothing at 8pm... And I added another MMJ dose then too as suggested by my neuro (am guessing he heard a paper on spasticity and MMJ).... last night, legs still feel weaker, but so far okay.

    No spasm last night.

    If spasm in middle of night again, doc said to do the above AND add 20mg Baclofen and 8 mg Tizanidine

    I am now up to 80mg Baclofen daily. If I do the middle of night,nitnwouid be 100mg daily. Was at 70... doc said I can take up to 160 daily. So far, the side effects on 80mg are same as 70mg. Substantial, but workable.

    My SPS friend had to go to pump to get the drug right intonsoinsl cord area, thus no CNS side effects.

    That could be my future, but hoping not. You gotta tolerate the procedure, have no infection from it, and tolerate the frequent putting of more Baclofen into te pump as a refill. My friend developed locked in Syndrome from the procedure. People with SPSare vulnerable to that with anesthesiaís.

    And, I donít know if I can surf or swim with pump...so I hope to not need one!

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  9. #275
    Distinguished Community Member Sunshine's Avatar
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    Thank you for grab bar help. I switched from 1 1/2” to 1 1/4” diameter,

    I went with Peened for more traction for soapy hands. Chrome would’ve been fine, more attractive, but decided to go Peened just in case. Thanks.

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  11. #276
    Distinguished Community Member Cherie's Avatar
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    You can surf and swim with the pump because it it totally under the skin of the abdomen. Dosing is about 1/150th of the baclofen so the dry mouth and brain fog and fatigue that you get with the oral is not there and tizanidine is generally not needed with the pump. 80 mg is HUGE. Please get another opinion. I would hate to see anything happen to you.

    The pump is filled every 8-12 weeks (no different than taking a DMT in the abdominal area). I know a dozen folks who have gotten the pump over the past couple of years and all say it is life changing in a really good way for them.

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  13. #277
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    Yes, Cherie, but she is concerned about getting “locked in” from anesthesia which she says happens at least sometimes in SPS.

    Otherwise, the pump sounds like a good idea.

    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #278
    Distinguished Community Member Cherie's Avatar
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    I understand but that is very rare and the anesthesiologist , if aware of the concerns, can act accordingly and perhaps choose a different agent than ones that may be involved.

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