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Thread: Suppression of fasiculation

  1. #1
    Forum Member nunhead_man's Avatar
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    Suppression of fasiculation

    I'm at my desk at the moment with the muscle in my left hip twitching away and it is really quite distracting - and my calf twitching kept me awake a couple of nights ago

    Can somebody remind me of the drugs I should ask for to suppress fasiculation?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  2. #2
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    Nunhead Man, When you find out what you can take to stop or maybe ease the twitching can you let me know please so l can mention it to my Cons. I'm finding it very hard to cope with it. Mine is also in my calf, arms, face, legs and tongue. Im
    very sorry to hear about your friend Dina may peace.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Andy and here's to 2020 being a good year for you...

    If it's 'just' meds to stop fasciculations, they tend to be rather a sledge hammer to crack a walnut approach - gabapentin, pregabalin, amitriptyline all can have quite unneeded side effects.

    Some people find taking a good quality CBD oil lessens them.

    If you try moving the affected muscles, that may also help. Ultimately, most people seem to learn to live with them. and I actually miss them

    Hope you find an acceptable solution.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Ellie's Avatar
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    TAPG1, what is your diagnosis? Maybe I could point you in a direction for meds?
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    Thank you Ellie. If you don't mind can l pm you to discuss please!

  6. #6
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Quote Originally Posted by Ellie View Post
    Hi Andy and here's to 2020 being a good year for you...
    Thank you - in the short term wish us luck in selling this house and finding us a new good one in Southampton.

    Noted "they tend to be rather a sledge hammer to crack a walnut approach" - so I think I'll wait and see how it develops.

    I might try CBD oil if I can find a decent supplier - what kind of percentage of oil am I shooting for?

    And how much should I be using in a dose?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  7. #7
    Forum Member Ellie's Avatar
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    Andy, CBD oil (or cream) is an individual choice really - generally buy the best you can afford and titrate up to a dose which alleviates your symptoms, that's the best I can offer!!

    At least there's more stability in the economy (for now at least...) so hopefully that bodes well for the housing market.

    Fingers crossed for selling yours and finding a lovely one in Southampton.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member nunhead_man's Avatar
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    Good morning Ellie

    Regarding CBT oil has this to be taken by mouth or rubbed on?

    Noted as we say elsewhere YMMV - your mileage may vary

    And thank you regarding accommodation - focusing at the moment on getting our current place sold
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  9. #9
    Forum Member Ellie's Avatar
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    Oil is taken sublingually for better absorption - not pleasant tasting but short lived - it's way too expensive for rubbing into the skin

    Cream/gel, being applied only to affected area, may be better suited if you don't want/need systemic effects.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Okay so under the tongue rather than not down the stomach tube.

    Noted about the taste but I have slept quite well the last few nights so will just note where this information is in case I need to go ahead with doing something about it in the future
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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