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New member
Jan 1, 2008
I just realized I made the post below to the wrong area. I'm re-posting in the correct area, sorry.

Hello everyone, I am new to this forum and to the internet in general. My husband was diagnosed with ALS in March of 2007. His only symptom at the time was falling due to a weak left leg. He has since progressed to a walker and he is having other symptoms.

Recently, he is becoming very depressed and has developed night hallucinations. He wakes up seeing strange things like people looking in at him through non-existent windows, seeing cats coming out of the top of my head. He also has auditory hallucinations such as hearing people talking in the house or hearing children. This only happens at night after he has gone to sleep for several hours and he wakes up talking and hallucinating.

I was wondering if this is a symptom that others of you have seen in your ALS loved ones? I'm wondering if this could also be possibly due to extreme depression. I apologize if this is a topic that has already been discussed but I'm not web savvy and can't seem to find anything about this in previous threads on this forum.

Thanks in advance for any insight you can give me into this disturbing new behavior.
Hello womore,Welcome to this wonderfull forum.We have so many great people on here which im sure will be able to give you more insight than i but i would like to say that i have not to read a post yet about this type of problem.....My husband has had als for 4+yrs. and has had bad dreams but no hallucinations!God that has to be awfull for him and for you.Have you contacted your neuro. about this symptom i would think that having hallucinations would mean something else is going on too!......I am so sorry that you have to be here under these circumstances but you have found the best forum on the web to get the answers you need.....God Bless ......Gina
Lack of O2 - using bipap yet?

My mother went through this same thing before she finally went onto a bipap and O2 - her breathing was terrible when asleep she had all kinds of hallucinations. With ALS, you will want to minimize the use of supplimental O2 , but the bipap may be enough to help him sleep better and not hallucinate. he will also be less depressed b/c he'll feel better all the way around! He will need to do a sleep study... if he's already on a bipap, his O2 may be too low – or settings could be off...
Good luck and welcome to the forum - lots of people w all kinds of knowledge and support!
Carbon dioxide levels may need checking

I agree with swmn, you need to check the o2 levels, seek a Pulmonary Doctor for this, plus sleep study will probably come into the picture, also. A neurologist familiar with ALS will probably refer you to the Pulmonary Doctor for a work up on the levels.

Breathing issues with ALS are very important, as the oxygen levels change when we go to sleep and your husband may need adjustment with a Bi-Pap machine.

You are in our thoughts and prayers, but seek help.

Hello Woomore-don't worry about posting in the wrong area. As long as folks can find and answer your questions - that's all that matters. I am glad you decided to join us. My first thought was the co2 levels, as well. Let us know how this works out after you see the doc. Regards, Cindy
Looking back, I think that's what went on with my father a couple of times. He told me that "yesterday I walked from here to the dresser and back two times." He said it made him very tired, and he got dizzy and had to hold on to the walker. He hadn't walked in over a year, and I just thought it was a dream. Another time, close to that time, he asked who's idea it was to not let him have a drink. He said we were all standing there, and he wanted to know who's idea it was to deprive him of water. They must have been hallucinations. I thought he was just dreaming these things. His breathing was very, very shallow the last month or so of his life.
With ALS, you will want to minimize the use of supplemental O2

Really? Why? Too minimize oxidative stress?

Regarding hallucinations, I don't know much about this disease, but I have not heard of hallucinations. I have had olfactory hallucinations though--smell things that are not there, including chocolate chip cookies and chlorine. I've also very occasionally lost a good chunk of vision for 15 minutes or so at a time. I suspect these symptoms may be unrelated to ALS, but rather sinus related.

Still, discuss with your neuro. Wouldn't it be great if this prompted them to look for some other cause and discover that he actually has something treatable INSTEAD of ALS?
Two or three days before my son passed, he called me over to his side. Then he told me that he was hallucinating. He told me that my porcelain roosters (one and one half ft. tall), I have 4 on top of my kitchen cabinets. He saw them as villagers coming down a hill. He also told me that he was actually watching a movie, but it was about him. I have heard of people hallucinating before they pass. I know my mom did, she talked about different things before she passed. It was kind of scary when she was talking about seeing a lot of snakes. She said, "They must feed them good, because they are fat." I had to laugh when she said that. Right after that she talked about seeing a beautiful stream of water, with beautiful green grass. In her hallucination, or whatever she crossed that stream, and she appeared very happy. She talked about green grass, flowers, grass, and different things. I talked to my mom for a very long time before she passed. This is one thing I felt cheated out of when my son passed, because he could not talk. I have been around dying people, and I know some talk. That used to worry the #$%* out of me while my son was sick, because I knew that he was going to depart sooner or later, and he was not going to have a voice. Als is soooo bad. God bless you all!

supplimental O2

With ALS, you will want to minimize the use of supplemental O2

Really? Why? Too minimize oxidative stress?

My PALS was told by his Doc to not use O2 if his lungs were doing the job. He uses a Bipap and O2 levels remain straong; he was told if he uses O2, his progression of respitory symptoms would increase... that he sould not use O2 until his O2 levels are unacceptable...
Irma....The fact that my mom was not able to talk to us before she passed was really upsetting to me. However, she did write us a beautiful message after the Priest had left which was a couple of hours before she passed away.
Anne, may your mom rest in peace. I am sure you will cherish her message for as long as you live. God bless you.

from my pre-als experience hallucinations can simply be a sign of fatigue. i've done these ultra-marathon bicycle rides where we would ride for upwards of 24-hours pretty much non-stop. after midnight, after riding since before dawn, we'd "see" things that weren't there. i've heard the same from folks who do ultra-marathon canoe/kayaking. we knew those things we saw were not real, just momentary flights of fancy--kind of as though a sleepy mind gets lazy/sloppy in interpretating visual senses. so that may be all it is--just a need for a bit more rest, especially if the person seeing these things realizes that they are not real.
I have very similar night hallucinations as well, and i have for about 5 years now. Although i have depression now, when they first started i was perfectly fine. I still have yet to find out what causes mine, but i dont have als and even though i think my depression may cause me to have them more often, im sure that is not what started them.
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