Help me help my Dad

[kcoy17]

My dad was diagnosed with ALS in April of this year. The first symptom he had was trouble talking. He's gone from that to almost not being able to walk in 6 months. I am in shock as to how fast this is happening to him. His latest problem is that he is getting very bad headaches at night when he's trying to go to sleep. He's in so much pain that it makes him cry which in turn makes his nose all stuffy and I'm sure that makes it worse. Any idea what the headaches are from? He has a bipap machine but does not use it. Any ideas?

Thanks... Kristal

 

[Graybeard]

Welcome to Heartbreak Hotel.

Get the bipap adjusted so he can use it. Read the other threads on bipap. Too many professionals don't know how to adjust it for PALS. Headaches may be from lack of fresh air getting to his lungs. Buy an oximeter. Got mine for $30 off ebay.

 

[dalvin]

The main culprit with the headaches is co2 build up in the blood. Oxygen levels can be good and still have the build up. Headaches are a major sign of co2. The bipap will help big time if he'll use it. Woke up all the time with headaches before I started using mine. After, headaches disappeared.

 

[celticgirl]

I suffered headaches before bipap was given, now use it all the time and no headaches now, try to persuade him to use his bipap, he will really benefit from it , Anne xx

 

[kcoy17]

Thank you so much for the replies. I just read them to him and he started laughing! He knows he needs to be using that machine.... I will try my best to get it on him tonight!

 

[JimInVA]

If he will use the BiPAP, he will be absolutely amazed at how much better he will feel. For my wife, she no longer had the regular headaches (and they were monsters) and no longer fell asleep multiple times during the day. She may have ALS, but she'd put up one heck of a fight if someone tried to take it away from her...

Jim

 

[skipper66]

I would definitely try to get him to at least try the bi-pap. My dad used one when he was first diagnosed and he tolerated it extremely well. Which was suprising since he gets claustrophobic really easy. Dad still has a bi-pap machine but probally hasn't used it in about a year now. He doesn't need it at this time. But, he has limb onset. He said he wanted hesistate to use it again when he needs it. Tell you dad to at least give it a try. If he doesn't like it he can always take it off.

 

[gooseberry]

He could try it during the day and see if it helps him. That is how I started my husband out. He thought it was a waste of time but within 2-3 days, he was hooked.