sleep and ALS

[C.F.]

I have a few questions concerning my friend with ALS. He says that while he sleeps, his oxygen makes him cold. He even gets a "cold headache". Is this common? Also am trying to figure a way that he can get a drink when needed during the night. Have to hang a container with straw on the bedrail, but that's tricky. The straw moves too much. Does anyone have any suggestions? He cannot do more than wiggle to it and get the straw in his mouth.

[Al]

If he's getting oxygen at night, he may be not getting rid of the CO2 and that is causing the headache. Oxygen is not normally given to ALS patients unless they have pneumonia or some other malady. He should be having a talk with a pulmonary specialist fammiliar with ALS.
AL.

[andyvaughn]

I second Al,.. Oxygen actually can be detrimental in patients with ALS, CO2 is what the body uses to trigger the body to breathe, and Oxygen when delivered without the pressure support of a bipap/vent, can further reduce the body's inclination to breathe. He should talk to his doctor soon.

[C.F.]

Thanks for your respose! So are you saying that if his doc who says he should be on oxygen at night is not an ALS doc, there may be problems he isn't aware of?
He did have pnemonia and was in hosp. but home now. Using oxygen only at night.

[andyvaughn]

While I am not qualified as a doctor, as a nurse, I can tell you what Al said is 100% accurate, for pnuemonia, yes, Oxygen would be used. However, as Al said, the headaches are likely caused by CO 2 build up. I can tell you, in brief, that in basic, laymens terms, the body is stimulated to breathe by 2 basic mechanisms, the first being build up of CO2, and the second being the need for oxygen. The body of a person with a chronic illness can get "used" to high CO2 levels, which then shuts down that drive to breathe, add oxygen, then the body thinks that it has enough, and the second trigger to breathe is shut down as the body is tricked into thinking it has enough. Using Oxygen is a no no in several chronic conditions, but in ALS my understanding is it should typically only be with pnuemonia, that a bipap is preferred. However, a doctor who is unfamiliar with ALS, seeing that the patient has symptoms related to CO2 build up, would automatically probably put the patient on O2 without fully appreciating the risk. I hope that all makes sence, and again, PLEASE do not take my advice as medical in nature, don't change any treatment plan without the full knowledge and consent of a knowledgeable physician.
Andrea wife of PALS Jim

[JACKIEMAX]

there is a test your pulmonary dr. can give, wherein you sleep all night with a little c ip
on your finger to determine if you need oxygen. my husband's oxy. level dropped to 84 for 16 min. one night so they prescribed oxygen every night, then part of the day, then all day, then a bi-pap, then a special bi-pap that breathes for you, now it is keeping him alive. this is a monster disease. this is not to frighten you, just to inform. jackiemax

[Alley_FL]

If on study over night shows 86 for 5 min. then your Friend needs a bi-pap. The weak breathing muscles is causing this and Bi-pap will help with this so the CO2 can get out. When a person with ALS is given oxygen they should be on Bi-pap or vent at same time. Has your friend has full Pulmonary Function test ? These are good to have every few months to monitor changes. Can you friend go to an ALS clinic or MDA in order to see ALS Doctors. You can also call or email your Local ALS association and tell them you need AN ALS Car Coordinator and one will come to your friends home and help you with everything !
Alley

[joelc]

That post is over a year old Alley.