Old 06-04-2009, 07:30 PM #1 (permalink)
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Default Awful Taste... Sleepless in VT

Hi all, my grandmother is failing incredibly fast from ALS as diagnosed late this last winter. She is now on a feeding tube and likely soon to have a tracheotomy to help her breathe. She is almost completely immobile now, and needs help to do anything- in the last two months the decline has been just astonishing.

All I can do is try to help in small ways an she has been really affected by incredible insomnia and what she describes as an awful metallic taste and film in her mouth. Even though she is on the feeding tube (thankfully she stabilized her weight) she can still eat regularly but can't stand to eat because of the taste. I have searched all over and see that this is a common complaint of ALS and other patients but cannot find anything to help her out.

Does anyone have any magic answer for her awful taste, or the incredible insomnia which she can't seem to battle. Prescription sleeping pills made her nearly demented and she is now trying Valerian root as a natural aid.... any info is so much appreciated, I am looking for anything to help her out at this point. Thanx so much, Alexis
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Old 06-04-2009, 07:41 PM #2 (permalink)
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Hi Alexis, is your grandmother taking Riluzole by mouth? I found that when I took it by mouth it left an awful taste in my mouth. I solved the problem by taking it with pudding, yogurt or applesauce which also made it go down easier. I now crush the pills in my pill crusher and put it in my tube with water before my formula and have no bad taste anymore. The other thing that I found is that as my mouth hangs open so much I tend to get a bad taste because it gets so dry. Sorry, I can't offer any advice about the sleeping as I haven't had that problem yet.

All the best,

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Old 06-04-2009, 07:47 PM #3 (permalink)
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She stopped taking the Riluzole- for a few reasons- one being the cost... she also was feeling that the side effects and small possible benefits of the drug were not helping her much. I don't know how true that is- the disease is likely what is causing her more pain than any drug side effects, but who knows, I'm not in her shoes.... She is eating a lot of activia yogurt to try to help out the stomach upset but nothing we have found has helped the taste... thanks for the help and my best to you too
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Old 06-04-2009, 11:30 PM #4 (permalink)
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Hi Alexis. Welcome. Try looking here. there may be ideas to help
http://www.alsforums.com/forum/showt...wabs#post61018

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Old 06-05-2009, 06:47 AM #5 (permalink)
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That's a great idea, she hates to drink water, has a hard time with that too. I never thought of swabs, thanks so much- I'm going to see of they have any at the local medical supply today! She had her clinic appointment yesterday so I'll update if they had any good ideas on this that may help anyone here. Many thanks
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