One day, my husband came home from a day at work and told me he had fallen asleep as he was riding his motorcycle to work...Hearing that was one of the scariest moments of my life.
The thought that I could have gotten a call that morning from the police telling me that my husband had died in a motorcycle crash was horrific. When he fell asleep, his bike started to lean over while he was riding down the highway and he would have crashed if he had not woken up RIGHT before he tipped over. To this day, I don't know how he kept from crashing. The moment he told me this I knew without a doubt that God was watching over him...and that we had to find the answer to his sleep struggles no matter what it took.
For years, he had been getting about 4 hours of sleep at night. When he was serving in the Marine Corp, he would get as little as an hour of sleep. We had no idea why it never mattered what time he went to bed, he would always wake up around 3:30 every morning...he could go to bed at 8:00pm or midnight and he could never get more than 4 hours of sleep...the earlier he went to bed, the earlier he would wake up.
I had tried every natural solution I could find, from Melatonin to supplements to essential oils...nothing really seemed to work. And in my gut, I 100% knew that these things actually should have worked if it had been a simple sleep issue but somehow I knew that something was dreadfully wrong.
He wasn't interested in trying sleeping medications as his body does not do well with drugs...besides, we knew that we HAD to treat the root cause. We believe that the body is amazingly designed and that when you give the body what it needs, it will heal itself. We just had no answers for what could even be causing this crazy sleep issue.
We didn't want a band-aid over the symptoms...we wanted the root cause treated...
We started doing our own research and started wondering if he could have narcolepsy...all of his symptoms seemed to align with it. Narcolepsy is relatively rare... Only 2-5 people in 10,000 are diagnosed with it. It is a "neurological disorder that affects the control of sleep and wakefulness. People with narcolepsy experience excessive daytime sleepiness and intermittent, uncontrollable episodes of falling asleep during the daytime. These sudden sleep attacks may occur during any type of activity at any time of day. For people suffering from narcolepsy, REM sleep occurs almost immediately in the sleep cycle, as well as periodically during the waking hours. It is in REM sleep that we can experience dreams and muscle paralysis -- which explains some of the symptoms of narcolepsy." (WebMD)
According to the doctors who we were reading from online, there was no cure for narcolepsy.
We were so worried that this diagnosis would mean my husband could no longer work outside the home as an electrician, but we had to find the answer.
I scheduled an appointment with the doctor who had diagnosed my husband with Celiac disease right away. He ran a panel on his testosterone levels because all of Phillip's symptoms seemed to lineup with low testosterone and our doctor had been seeing more and more men of all ages coming in with terribly low levels of testosterone. I kind-of hoped it would be that...because that could be a fairly simple fix. But the panel came back and his levels of testosterone were great! The doctor was shocked and I was half-sorry that his testosterone levels were just fine because that meant it was something worse. Then he referred us to a doctor who specialized in narcolepsy.
Since we couldn't see the narcolepsy specialist for a whole month, we got in with another doctor who worked with him and he scheduled Phillip for a sleep study. I was so nervous the night of the sleep study that I didn't sleep all night. A week later, we went in to get the results...
"You were right..."
That's what the doctor said as he walked in the door...my heart sank. Phillip had fallen into REM sleep in the first 5 minutes of falling asleep. Not only did Phillip's sleep results test positive for narcolepsy but he also had sleep apnea. Now we had to go meet with the narcolepsy specialist. Before our appointment, I did tons of research because I wanted to understand narcolepsy better and find out as much as I could about this disease and I had a list of questions that I wanted to ask the specialist.
"There are 3 different types of drugs for Narcolepsy."
The narcolepsy specialist walked in the patient room and started to tell us about the different medications. The first was a drug that they give people with ADHD and he didn't explain it much. The second ones were what he was suggesting trying first. There were 3 new drugs that were created for narcolepsy and they had been around for only 6 months and "the only side effects is seizures if you have had them before" and the third drug was what he would suggest trying if the second 3 didn't work well enough and that was "a drug that was created as a date rape drug, but it works great for narcolepsy!" I kid you not...that's what he said!
This whole time, he hadn't stopped talking long enough to ask if we had any questions. It was like we were just a number to him...not actual people who had feelings, concerns, opinions, questions, and fears about this diagnosis. And as if the fact that he was telling us that my husband would need to be on a medication and a C-Pap machine for the rest of his life really wasn't anything to wink at.
It didn't really feel like he was there to help us...
he was just there to give us a prescription and walk us out the door.
I had been really excited to ask all the questions that had been whirling around in my brain about narcolepsy because I really wanted to understand what was going with my husband's brain. I had also written down some natural things that some narcolepsy websites had mentioned to see if he thought any of them were worth a try. But honestly, I was so frustrated by this doctor's manner that I didn't even want to ask him anything...but we were there and paying for this time ourselves so I decided to throw one question out there.
I asked him if anyone had ever treated narcolepsy with anything natural.
Immediately, he responded abruptly, "oh no, only with medication."
I instantly felt completely shut-down... which is something you should NEVER feel at your doctor's office! They are to help you and answer your questions and meet you where you are...not shut down your questions. We left the office feeling very discouraged...we didn't know what to think.
xo Rachelle
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