Hi Josh, and welcome (great name - my son is also Josh!)
Although MC can have some relatively minor impact on respiratory issues (for instance, when you sneeze and your abdominal muscles cramp up and you can't breathe for a few seconds), it should not be a cause of sleep apnea, as breathing (for life support) is a totally biological process, and as your blood saturations change, your brain is automatically signaled to trigger another breath. This is different from conscious, volitional breathing like meditation, swimming, etc.

Especially in a young person, sleep apnea is not normal, and your physician needs to test you more thoroughly to determine what sort of dystrophy you have, and also do a sleep study on you, to diagnose your sleep issues. Waking up groggy, and remaining groggy and dopey for hours is not normal.

First of all, you should review your diet, and any "bad" habits - do you smoke, drink, do any drugs, eat a lot of sweets or highly processed foods. Do you have allergies? Are you overweight? Do you exercise? (etc, etc...) A lot of different things can impact a person's body - you could have thyroid issues, which could certainly impact your sleep and alertness.

So... there's a bit of info to mull over, and I'm sure there will be more. Jan is a true wonder at ferreting out problems and possibilities. Meanwhile, especially if you have insurance, you should be a strong advocate for yourself, and push for better diagnostics... and keep us in the loop! Lois

Type of Myotonia: MC- Becker's type

Country: USA

Welcome, Josh!

Like Lois mentioned, it's very important that you get testing to find out what is causing the sleepiness. It is not correlated with MC, but it is strongly correlated with myotonic muscular dystrophy. A myotonic profile through Athena Labs can help you determine which type of myotonia you have.

Here's a link to an article about what is called "excessive daytime sleepiness" (EDS) and myotonic muscular dystrophy (in this study the type was DM1).

Sleep Complaints in Patients with Myotonic Dystrophy

If your DNA testing confirms myotonia congenita rather than myotonic dystrophy (it can be hard to tell the difference clinically at your age), then it might be worthwhile to get a sleep study to check for apnea. There is a medication called Provigil (modafinil). It has been used to treat hypersomnalence in different conditions.

Please let us know how your testing turns out. It can be a slow process, but it's worth it to get an accurate diagnosis.

Jan

Type of Myotonia: Thomsen's

Country: US