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  • JAY TEE
    replied
    Christoff, the taste is weird I assume the Riluzole and eye drops and Carbocisteine make it weird as taking it three times a day. My saliva very thick and I am drooling all day. I have a feeding Peg but luckily don’t need it yet as eat everything if mashed up. Formally diagnosed with MND 5yrs ago.
    I don’t struggle on a Saturday night as always have my curry and a pint of the only thing I pray for Enville Ginger.
    Best wishes John

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  • Terry
    replied
    Hi hayls and welcome to the forum,

    I have similar problems with even slightly sour things or tarty foods or drinks, I just pull funny faces like normal people do if they eat a bit of a sour lemon. This also happened quite early on in my Mnd life and hasn't got any worse.

    Chris, I can't drink many red or dry white wines now but can drink a little of most beers.

    If riluzole starts to dissolve in your mouth it will cause a loss of feeling and affect taste.

    Love Terry

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  • Hayls
    replied
    I’ve experienced something similar but usually only when I’ve been active and think it’s linked to how I’m breathing and swallowing, I call it cotton mouth, it’s very unpleasant �� the only change in taste I’ve noticed is I can’t handle sour things or tarty as my saliva goes in overdrive and I start choking, try and see if there is a pattern of when the problem occurs, good luck ��

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  • Music man's wife
    replied
    Not taste but hubby says he smells smoke and he feels his lungs are full of smoke. He can't take Riluzole as he has fibrosis of the lungs.

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  • Lynne K
    replied
    Hi Christoff and all other contributors. I went off sweet things including chocolate shortly after starting Riluzone. Like Dina I prefer savoury things. I get the occasional desire for a bit of cake or something but then tend to leave it after two or three mouthfuls (not really mouthfuls sinceI take smaller amouts so as to avoid choking). I love a hottish curry. Lynne

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  • Kayleigh
    replied
    Hi Christoff

    So far, I havn't experienced a dusty taste in my mouth - what flavour dust is it? - you reminded me of some sweets I used to buy in the 1970s called 'space dust' (I think its called 'popping candy' now).

    Like Dina, I much prefer savoury to sweet food these days. However, I still enjoy sugary drinks.

    I hope you are still able to enjoy your food, even if your tastes have changed.

    Love
    Kayleigh xx

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  • Ellie
    replied
    Hi Christoff - nice to hear from you

    Yes, in some people, ALS does appear to (eventually) damage some taste buds, or earlier in bulbar onset people and the perception of smell too, which invariably affects taste.

    The 'dust' feeling in your nose could be due to a weakening sniff or changes to the mucosa.

    And, as Dina alluded to, riluzole is also thought to damage some tastebuds. Other factors are excess or too little saliva, or even changes in how our tongue moves food around in our mouths and side effects from other meds.

    Either way, there's a significant amount of self-reported changes in taste and going off favourite foods or developing likes for new foods, similar to pregnancy. I see from your photo you've a rather big belly, but I think that's down to way too many Duff beers, rather than a baby

    I guess you'll cut down on all those beers now Seriously though, that's a shame...

    Love Ellie.

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  • Doug Carpenter
    replied
    Hi Christoff

    Nope! Not noticed any changes - been on Riluzole for two years.

    I think I eat less nowadays, but I put that down to lack of exercise.

    If it persists I'd mention it to your GP or clinic.

    Good luck!

    Doug

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  • Christoff
    replied
    Yep been taking Riluzole for 4 years

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  • Gillette
    replied
    Hi Christoff,

    Do you take Riluzole/Rilutek?

    I have not had any odd taste or smell but I have gone off chocolate. In fact, nowadays I am more likely to have a savoury snack than a sweet one!

    Leave a comment:


  • Christoff
    started a topic Taste

    Taste

    Hi

    Has anyone noticed a change in taste??

    Over last few weeks i have had a dusty taste in my mouth, also dusty smell in my nose....even worse i appear to dislike the taste of alcohol!!!

    Christoff
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