Write me: eva@evagremmert.com
Top Gun Mask.

In the fall of 2010, Nick’s seizures were out of control.  Our epileptologist (a neurologist who specializes in epilepsy) was looking for all sorts of solutions including the usual medicine changes.  Some of the factors used to manage epilepsy can include controlling his environment, eating or restricting certain foods, following a strict medicine schedule and avoiding sleep deprivation.  One factor that the doctor brought to our attention was sleep apnea.  It seems that many individuals with epilepsy also have sleep apnea.  Studies have found that by treating the sleep apnea, some of the patients have lowered the number of seizure episodes.

So we needed to get Nick tested.  Back then, they had created a sleep study room in the hospital.  It was set up to look a little like an hotel room.  The main difference was that they had an observation window on one wall and although the lights dimmed down,  it was not completely dark.  Nick has had many EEG’s in his life, so he wasn’t concerned about having the electrodes on his head for the test.

He was pretty excited and they had brought in a cot for me to ‘sleep’ on myself.  Every hour or so the technician would come in to take more data.  At the end of the night, I was sure that neither Nick nor I had actually been asleep.  But they assured me that they had gotten the data required.  When we met with the sleep doctor the next week, he confirmed that Nick did indeed have sleep apnea.  He would require a C-PAP (Constant-Positive Airway Pressure) machine to treat this issue.  I had done some study on the subject and was worried about how he would adjust to wearing a mask all night with constant air pressure blowing into his throat.  I had talked to a few of our friends who had the machines and they said it had been difficult to get used to it.

There was another choice.  The APAP machine was auto-titrating, or self-adjusting in air pressure.  It starts out with a lower pressure. When you need it during sleep, it ramps up on a breath by breath basis to give you the pressure that you need at that moment.  I thought that the APAP machine might be easier for Nick.  The device wouldn’t start out like he was in a wind tunnel when we were trying to get him to sleep.  The doctor agreed to order the APAP machine.  One hurdle jumped.

Next I was worried that Nick would reject using the mask.  There are different types and sizes of masks, and the technician was great at helping us pick out what we all hoped would work for Nick.  While we were making the final mask decision, Nick was holding the mask that we thought would be the best one for him.  He didn’t look to excited about it.

Arden reached over and put it on Nick.  He told him, “Look Nick, you have a mask just like Maverick on Top Gun.”  Nick loves the movie “Top Gun.”  The music is incredible and of course there are plenty of airplanes.  He will watch that movie over and over.

Nick frowned a bit, “I got a Top Gun mask?”

I jumped in with, “Yes Nick, you have a Top Gun Mask.”

Nick asked, “I keep it?”

Arden reassured him, “You get to keep it and wear it every night.”

We began to hope that we would have success with this new therapy.  The next hurdle was jumped.

That first night, we did the usual routine to prepare Nick for bed, culminating with putting on his Top Gun mask.  He asked, “I am Maverick?”  We confirmed that he was just like Maverick on Top Gun.  As we shut his bedroom door, we wondered what the night would bring.  Nick had been waking up every two hours each night for the previous couple of years.  We had thought that it was insomnia, but it was sleep apnea.  Arden and I went to sleep.  When we woke up, it was light outside.  Nick had not woken up for 11 hours.  I was afraid that something bad had happened to him, so I made Arden go into the bedroom first.  There he was, just as we had left him, sound asleep.  We had to wake him up.  It was amazing.

This has been the pattern for the past  6 1/2 years.  He wears his Top Gun mask every night.  I am sure that it has helped reduce his seizures, which is wonderful.  For me the biggest change is that Nick is sleeping through the night, and so are we.   It has been great.

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1 Comment

  • Shirley Scruggs Posted September 21, 2017 5:15 am

    Hi Eva, just found your blog and book info on Facebook. What a great thing you are doing. I am enjoying the blog-keep it up.
    Shirley

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