Ask the Doc: Q & A with Edward Kasarskis, MD, PhD 

Dr. Kasarskis

Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Q:  My husband has trouble using BiPAP at night. He wears a chin strap, and can’t sleep well, and then feels tired throughout the next day. So he now uses it during the day when he’s watching T.V. Does it make any difference if he uses it during the day rather than at night? 
     - Cindy Emahiser, Swanton, Ohio

Dr. Kasarskis:  That’s an excellent question. Although it is OK to use BiPAP during the day, its greatest value is at the night during sleep. The key to answering your question is your observation that he "feels tired throughout the next day." This tells me that BiPAP is not being effective in moving air into and out of the lungs during the night.  When this occurs, the blood oxygen can fall which wakes the patient, interrupts sleep, and causes sleep deprivation and drowsiness the next day.  Lack of sleep impairs optimal functioning during the day, which is the last thing an ALS patient needs.

Using Bi-Pap effectively isn’t easy and your husband's case is harder than most with his weak jaw closure. BiPAP typically requires a great deal of fine tuning, adjusting pressure settings, and making sure the mask fits properly. People who need chin straps can be tough to fit, but it is possible if you work closely with a respiratory therapist, often trying different types of masks to see what works best. It is important that the mask is comfortable and does not leak.

You husband might benefit from a formal overnight sleep study to make sure everything is working optimally -- mask fit, pressures, etc. Such an evaluation can pinpoint the cause of the problem and give clear guidance about how to improve his ventilation and his sleep.

He may have a palate weakness, and if so, could benefit from having what is called a palatal lift to keep that upper part of the back of the mouth (soft palate) out of the airway.

The goal of all these efforts is to allow your husband to get a restorative sleep so he can have maximum energy for the next day. The good news is that it sounds to me like the problem is indeed solvable.

Each issue we feature a leading neurologist specializing in ALS responding to a question. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.