Treating sleep apnea is so complicated for Myotonic Dystrophy (DM) and how it’s treated varies from person to person. Typically DM patients that are diagnosed with sleep apnea are treated just like any other sleep apnea patient.
Many years ago, they started my son Warren, on a C-Pap (Constant Positive Air Pressure). He couldn’t make it work and would take it off after falling asleep with it on. The doctor diagnosed him as “non-compliant”.
Doctors wouldn’t work with him after that because they assumed that he was a behavior problem.
After researching sleep apnea and DM and found that those with breathing disorders caused by neurological conditions need a Bi-Pap (Bi-level Positive Air Pressure). I convinced the doctor to give Warren another chance and he hesitantly prescribed a Bi-Pap for Warren. That worked better and Warren used it for many years and he last the “non-compliant” label but he was still never successful at leaving it on all night.
The pulmonologist at the MDA clinic has a device that can test for CO2 called a Transcutaneous CO2 monitor. After testing the men in my family she found out that they all retain C02 (which is poisonous) and therefore qualified for a Trilogy machine which is an extra smart Bi-Pap. The Trilogy turned out to be an excellent device. This was the first device that Warren was successful at leaving on all night.
When it came time for my daughter Andrea to have a sleep assist machine they automatically put her on the Trilogy because of our family’s history and success with it. After a year of trying to use it every night she still can’t get it to work for her.
We recently had the opportunity of visiting Dr. Peterson, who has the best understanding of DM of any of the pulmonologists that we have been to. He taught us that too high of air flow from any device can cause the muscles in the mouth and throat in those with DM to be ‘activated’, causing myotonia and making the breathing problems worse.
Dr. Peterson has now prescribed a basic Bi-Pap for Andrea. Due to Covid there is a 4 week waiting list for sleep apnea devices so Andrea hasn’t received it yet. But we are hopeful that someone may finally be figuring out what works best for her.
A week ago I was contacted by a mother of a DM individual that is having struggles adapting to his machine, just as Warren and Andrea have had. She was looking for some advice from me.
I shared the above information with her but since she isn’t in my state she doesn’t have access to the same doctors that I have. So besides the above information I also asked her if she has access to an MDA pulmonologist? And even more important, does she know someone else in her area with DM that has a pulmonologist that has had their sleep apnea treated successfully.