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BlueK58

Member
Joined
Jun 18, 2013
Messages
25
Reason
Loved one DX
Diagnosis
06/2009
Country
US
State
MA
City
Westfield
Hello there! My mom has been living with ALS for about 4 years now. At home and on hospice. Was recommended that she try Ativan because she has EXTREME anxiety. Just figured I'd share our experience with it...Previously she was taking xanax which was working well. Nurse suggested Ativan with the hopes it would work better. My mother had a terrible reaction to this medication. It seemed to enhance her PBA (uncontrollable crying or laughter-but im sure most of you know that) and made her mind foggy and confused. She could hardly communicate and would forget what she was trying to say half way through. Literally would panic and cry for hours until she was exasperated. Was really hard to see her like that and not be able to help. It also made her much more drowsy during the day. My mom is a RN and told us she wanted to give the medication a little more time (she recently started hospice services at home so her daily routine was changed and started a few other meds so we waited it out because she doesn't do well with changes in schedule) She was acting so exhausted, we began to fear she was going to pass on soon. Looked up some info about Ativan online and apparently 1 in 10 people have this reaction to the medication. We talked to the nurse and she is back on xanex. She is now communicating on her dynavox, sleeping less in the day and most importantly SMILING again-back to her normal self. I am not knocking the medication, I've seen it work wonders for other people. Just putting out our experience because we were all very scared and thought the worst. I would hate for anyone else to go through the worry and would hate for the person with ALS to feel that way! Anyone else had a bad reaction to ativan?
 
I take ativan for anxiety when I can't sleep. I feel it is a pretty strong sedative. It makes me very drowsy and I need to sleep it off. I could see where it could make a person's brain foggy. I was on xanax before and it seemed to be milder. I was also on klonipan before and it knocks you out too. I think you made the right choice on changing her meds. I wouldn't totally knock Ativan though because it might work well for someone else depending on their chemical make-up. Hope your mom is doing better with the change of meds. Take care, Kim
 
Glen could not take Ativan. It made him EXTREMELY agitated. Doctor took him off of it immediately.
 
Thank you for these posts. My husband just started Ativan and he is sleeping, sleeping, sleeping... I'll watch out for how much he is taking and what else is going on with it.
 
Hospice pushed Annie into trying Ativan, although she was having no anxiety or other reason to use it. So Annie complied to make the hospice nurse happy. After 4 days on a low dose she developed her one and only case of diarrhea, and it was severe. But much more onerous was a dramatic loss of whatever muscle strength she had left. This is listed as an infrequent side effect, and is permanent. Annie still had functional use of her hands before she took it, but was unable to use them at all afterward. This started her final decline. The change was startlingly dramatic.

When I learned that severe and permanent muscle weakness is a known possible side effect of this drug, it astonished me that anyone would prescribe it for an ALS patient, who is already suffering from permanent muscle weakness. This was especially true for Annie's case, since there was no reason for her to take it other than to satisfy the hospice nurse. But this too was in the hands of the Lord.
 
Thanks everyone for sharing your experiences! again, not trying to knock it just wanted someone else to be able to read this and help them make a decision! Xanex is working OK, klonipin was also a no-go with my mom. Think she is sensitive to these types of meds. We need something better for anxiety but Xanex seems to be our only option so far. @ Annie's Phil -i am really sorry to hear that, had NO IDEA that could happen and we were never told about those possible side effects. Hopefully someone sees what you posted and can look up some more info. Thank you everyone and I send love to you and your PALs
 
thank you for these post!
 
BlueK58

Thanks for sharing that. It is so important that we share these things. You may have seen that I was asking you in another post about the anxiety medications that your PALS is taking. Hospice has not mentioned Ativan, but they have mentioned Valium. I will say a very big NO to the Ativan, just based on what you and everyone else shared. This forum is priceless.
 
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