Acupuncture. It changed my life.
In 2008, I finally addressed an issue that had been plaguing me for more than a decade prior to that: Extreme daytime exhaustion, even after a full night’s sleep. Cause: Unknown. — Just perfect.
Results from a polysomnogram and daytime sleep latency test concluded that I suffered from idiopathic central hypersomnia. Ever heard of it? Likely not. There is little research done on it and it is uncommon. Although, many people may live with it undiagnosed.
Symptoms include:
- Difficulty waking from sleep.
- Naps do not refresh you.
- Can wake up feeling confused and disoriented.
- The need to sleep can strike at any time. This includes while working or driving a car.
- Memory issues.
- Brain fog.
- Excessive fatigue.
My sleep doctor put it simply: The sleep and wake sensors get all out of whack. So, even though you are awake, your brain can think you are asleep and vice versa. I can have moments where I don’t remember things because, well, my brain was sleeping while I was awake.
My polysomnogram showed that my brain was waking up hundreds of times during the night, prohibiting me from actually sleeping (even though I was presumably asleep and did not physically wake). The daytime sleep latency test showed that I could probably beat most people in a nap duel. The average person needs 15–25 minutes to fall asleep during the day. Me? An average of 2 minutes and 45 seconds was all it took. I like to go above and beyond, but this was one area I was okay relinquishing.
My Symptoms
Brain Fog: I can recall one of the first episodes that may have been related to my condition. I was reading out loud during a high school class. Instead of absorbing what I was reading, I suddenly had to concentrate on reading each word. I couldn’t comprehend. I could only focus on how to pronounce each word. Now, this could very well be a focus issue. Some sort of attention deficit. But, looking back, I really believe that hypersomnia was the cause or at the very least somewhat related because of the arrival of sleepiness as well.
Spontaneous Need to Sleep: Also in high school, my best friend whom I love dearly, would follow me home after a night out because I had a tendency to dose off at the wheel. She would literally follow me home from wherever we were and then travel 45 minutes back home. Now that’s a true friend. She would flash her lights at me or honk if she noticed me veering. Note: This was before cell phones. Otherwise, she could have just talked to me while I drove.
Memory Recall: I worked at Chili’s while in college. Anyone who is or has been a server knows that things can get so crazy busy that you forget things. But once the customer asks where their appetizer is after you accidentally skip over it and bring out their main course, a bell should go off in your brain that says, “Shoot! I forgot to put it in the computer!” Your memory should be jogged.
In this particular case, a customer told me that I had missed bringing out their appetizer. I froze. It was like a panic set in. I felt embarrassed and stupid. I had absolutely no recollection of it happening. No bell. No memory jogging.
I vividly recall confiding in a fellow server who consoled me. But, I doubt he fully understood why I was freaking out. I never did get that memory back. No aha moment. It was literally erased from my mind or perhaps never recorded.
Excessive Fatigue: I was the one that without fail who would fall asleep during every get together. Watching a movie, hanging out with friends, etc. I was the one that got teased because I would fall asleep within minutes of sitting down.
I have four children now, so I know what tired is. I know what sheer exhaustion is. But this is a different kind of exhaustion. When I have flare ups, I just don’t even want to talk. I don’t want to lift my arm. I’m too tired to. There is a lethargy that floods my entire body.
My memory is quite possibly the most frustrating part of this. Often I don’t recall things that happened earlier in the day. Chronology is challenging as well. Sometimes I remember the events that happened, but I can’t recall in which order. This impairment can be very frustrating and embarrassing; it’s not like I can explain it to everyone every time it happens. Plus, few are aware of or can understand this condition. I want people to know that I am truly listening and engaged, although it may not appear that way later on.
Treatment Attempts
Xyrem: I can’t recall which I tried first, but I began with the pharmaceutical route. I believe the first prescription drug I took was Xyrem. Xyrem is the sodium salt of gamma-hydroxybutyrate (GHB). The date rape drug. Needless to say, that was short lived. There is roughly 1500 mg of sodium in each dose, which I figured wasn’t good on my body long term.
To administer the medication, I had to make sure I was going to get 8 hours of sleep (challenge #1). I would take the first dose and set my alarm for 4 hours later, at which time I would drink a second dose. If I woke outside of the 4 hour intervals, it was dangerous. I felt drunk off my ass.
I recall having to use the bathroom once within the 4 hours and fell over on the way there. My new husband and I wanted to bring children into the world. So concerns ran through my head over whether I could take this medicine while raising children. I highly doubt I could nurse a child while on it. Not to mention the logistics of it. Babies don’t sleep in 4 hour intervals. All in all, the drug actually helped my symptoms. But wasn’t the right fit for me.
Stimulants: I also tried stimulants (A.K.A. band aids). Those weren’t the right fit either. They worked at first, then made me anxious and jittery.
Acupuncture (Winner): Then a friend mentioned acupuncture. Needles? No thank you. But I couldn’t help but remain intrigued. He spoke about how it was life changing. After realizing I had to do something about my condition and nothing else was a good fit, I decided to give it a try.
My first acupuncturist was Dr. Fan in Tampa, FL. After three visits, I was ready to give up. I felt vulnerable, uncomfortable, and couldn’t relax while there. Sometimes it can pinch a little. I decided it was not for me. But then my husband (who does not generally subscribe to natural treatments) encouraged me to give it one more try, insisting that I didn’t give it enough attempts. And so I did.
That fourth visit got me hooked. Thank you, hubby. Thank you. And thank you, Dr. Fan. You are amazing. I started to relax more, partially because I knew what to expect and I started to trust.
“Acupuncture involves the insertion of very thin needles through your skin at strategic points on your body.” (mayoclinic.org) When treating an issue with acupuncture, you have to be persistent and consistent. I went three times a week for a few months. Once you are in maintenance mode, you can go less often. That is where I am at now. Ideally, I would love to go once a week. But, I generally go once a month or every two months.
I cannot emphasize enough the positive change acupuncture has had in my life. Although I still have trouble, my energy level is much higher than it used to be. Hey, I made it through writing this article without falling asleep! I wish it addressed the memory issues more. But, I am just so grateful that it helps with my energy level. Acupuncture is not for everyone (just like any treatment). But, it has given me hope and changed my life for the good.