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: I have bulbar ALS and am troubled by an enormous amount of thick saliva in my mouth. I am using Robinul, but it doesn’t do much, and the TransDerm Scop patch didn’t help either. Mouthwashes are difficult for me to use because I can’t swish them around or spit the fluid out, since my lip muscles are weak. What else can I try?

Dr. Kasarskis: Dealing with excess saliva can be a very frustrating problem and is quite common.  It can be challenging indeed. People with ALS produce the same amount of saliva as do people without the disease. But people who have trouble swallowing eventually have difficulty swallowing their own saliva. Those of us who swallow normally are regularly swallowing our saliva without even being aware of it.  When the ability to swallow is compromised by muscle weakness, saliva builds up and causes problems like drooling or even choking. This is only made worse when the facial and lip muscles are weak, as you note.

There are several available approaches to the problem:

• Medications: So-called anti-cholinergic medications (such as amitriptyline) can reduce the amount of saliva produced. But they often have side effects: drowsiness, difficulty focusing the eyes, and excessive dryness of the mouth. Some people, especially men, also can find the drugs make it harder to urinate. And sometimes the secretions decrease in quantity but they become thicker and more tenacious, which makes them harder to cough up. It’s frequently a balancing act between reducing the extra secretions and making the mouth and mucous too dry, thereby causing other problems. Some people take an anti-cholinergic drug to dry secretions, along with another drug, such as guaifenesin, that is designed to thin secretions. But even with that combination, some people find that this is not totally satisfactory and additional measures are needed.

• Parotid gland radiation: This is reserved for patients who cannot tolerate anti-cholinergic medications.  The procedure involves focusing low-dose radiation to the parotid gland on one side. The radiation reduces the gland’s ability to produce saliva. Even one session of radiation tends to produce good results. Some people will be able to  lower their dose of anti-cholinergic medications after the procedure. Typically it takes about three to four months to see what the maximum benefit will be from the radiation.

• Oral suction devices: A low-tech solution, these devices, typically used in the hospital setting, help you remove the excess saliva as it builds up (and can also be used for oral hygiene).  A further refinement for oral hygiene is the Plak-Vac toothbrush (click here to learn more). The Plak-Vac is used primarily when brushing the teeth to remove excess secretions during the process.

• Adequate fluid intake: When you lose strength in the muscles that control your mouth, it can be harder to close your mouth tightly, and you tend to lose moisture by mouth breathing.  Thick secretions can be a sign that you are dehydrated and need additional fluid intake, probably via a PEG tube.  If you do not yet have a PEG, you should consider discussing the option with your physician.  If you already have one, you may need to increase your fluid intake through the tube.  Talk with your physician or dietician about the best options for you.

• Moisten the mouth.  Whether a side effect of medications or mouth breathing, you can moisten the inside of your mouth and tongue by swabbing with lemon glycerin swabs.  This will provide some relief for excessive dryness.  These are available from many on-line sources.

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.