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Thread: Riluzole side effects

  1. #1
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    Riluzole side effects

    Does anybody else experience - headaches? stomach gurgling? sleepiness? with Riluzole?

    Hard to tell which are MND related and medication related sometimes

    Thanks

  2. #2
    Forum Member Lynne K's Avatar
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    I just deleted a duplicate post. I don't know why, but editing was the only way that I could get rid of it.
    Last edited by Lynne K; 2nd June 2019 at 00:00.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Lynne K's Avatar
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    I just saw your post about Riluzone Vicky. If your dad gets headaches in the morning then speak with one of the MND nurses or his Dr Chaouch about it because it might relate to his breathing. Weak breathing leaves too much carbon dioxide in the blood which can cause headaches.

    I don't get any indigestion with Riluzone but some people do. So they only take them on an empty stomache. So you can have a tablet an hour before eating or 2 hours after eating. I follow this procedure as it's said that Riluzone works best that way. It's probably worth your dad trying this method of taking his pills. I hope that it works for him.

    Tiredness is, I'm afraid a common MND symptom. I dose during the day these days. I never did previous to MND.
    Lynne x
    Last edited by Lynne K; 2nd June 2019 at 00:03.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
    Forum Member Terry's Avatar
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    Hi vicky,

    Lynne has given you a good answer. I have a lot more problems with wind and gurgling but don't think mine is too do with riluzole.

    How long has he been taking it?

    As Lynne also says, it's more effective if taken on a empty stomach but I doubt if it make any difference to the way he feels.

    Many side affects come from it desolving before it reaches the stomach and some brands are better in that respect.

    If you think that it is that causing the problem then see his doctor or specialist about coming off of them for a few weeks.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
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    Thanks Lynn - helping me with a lot - appreciated I will tell my dad your advice

    If you don’t mind me asking, how long have you been taking Riluzole? Have you found it helpful?

  6. #6
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    Thanks Terry

    Do you feel your guegling is mnd related? I wonder if my dads may be as they did say the EMG showed some activity in his stomach and he gets shakiness in his stomach too

  7. #7
    Forum Member Terry's Avatar
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    Hi vicky,

    It's sort of a buy product, it's air moving around the stomach and intestine.

    Probably caused by, eating not having a good posture, gulping air into it, not moving around or standing up much and the inability to release wind.

    Love Terry

  8. #8
    Forum Member Lynne K's Avatar
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    Sorry for slow response Vicky. I've been taking Rilozone since November 2017. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #9
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    The peristalis is impaired and the core strength formed by the abdominals and oblique muscles is weakened, As he disease progresses the transit time increases giving more time to produce gas. Nothing to do with swallowing air. Riluzole has no effect on gastrintestinal dysfunction.

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