Too Hot or Too Cold … Why Won’t SCI Let Me Sleep!?

Sleep and SCI often do not mix.I don’t think I’ve had a solid eight hours sleep in nine years. Sleep, that elusive minx, has evaded my life since my spinal cord was torn. I did snag one eight-hour night of sleep last July, but that was because I had just received the first round of bladder Botox injections of my life. Crazy powerful stuff, Batman.

Anytime you try a drug the first time is when it works the best — we all know that. Me, the woman born with a cursed body that absorbs medicines and drugs in record time, finally had this blissful moment where I could just lie in bed, sleep soundly, and not be woken up once in eight hours from autonomic dysreflexia. That night was amazing.

Unfortunately, the Botox didn’t help me sleep another full eight hours after that first night. I am able to sleep four to five hours without being woken up, and that is much better than the two hour intervals I was getting before the Botox, Still, that eight hour sleep you’re supposed to get that they teach you about as a kid? Yeah. No matter what I try (and believe me I’ve tried), I just can’t seem to make happen again.

Sometimes I feel like Mick Jagger singing “Satisfaction,” in that I can’t get any most nights. I’ve tried over-the-counter sleeping meds and had a terrible Unisom experience that involved hallucinating. I’ve tried melatonin, too. That stuff gave me mouth sores. Getting sleepy can be hard.

And then there are nights when I am exhausted, but because it’s very hard to move my arms in bed, especially with my seemingly million pound feather duvet on me, I just can’t get comfortable. After my PCAs leave at night, I’m alone. If I need to adjust a butt pillow, leg pillow or my head pillow, it’s all on me.

Even though I can’t move my triceps, I do OK, but as I get older everything seems to be getting just a bit more cumbersome and loathsome; or maybe I’m just lazy. All I know is that getting my head pillow down under my neck every night, but then having to readjust it every time I put my bed up or down even a fraction of an inch (I have a queen-sized automatic bed) makes me feel a bit like Sisyphus pushing that boulder up that hill.

If only they could hook me up to an automatic sleep machine every night. That would be awesome.

The never-ending body temperature battle seems to be raging worse in my life now that I’m creeping into my mid-30s, too. People with SCI have been long known to suffer from terrible body temp adjusting issues. Hot, cold, hot, cold … you’d think we’re all pregnant. And in the winter it’s worse. Despite a vented blanket, a fan, putting my thermostat on auto and wearing socks — my crazy old lady idea — I still wake up every three hours either too hot or too cold.

I start by feeling like I’m freezing at 12:30 a.m. when I go to bed, then by 3 a.m. I’m overheating  and need to empty my bladder. Then at 5 a.m. I wake up cold. I put my covers on only half-way, go back to sleep, but at 7 a.m., I’m hot. It’s a terrible way to start the day. By 8:30 a.m., my PCA arrives and I’ve only managed to get one really good sleep interval — pout.

Well, as it turns out, crappy sleep is nearly universal among all people with SCI, especially among those who use vents. In a small study recently conducted by VA Medical Center and Wayne State University School of Medicine, following 26 people with chronic SCI (15 had a cervical injury, and 11 had a thoracic injury) 92 percent of them all reported poor sleep quality.

And they also have something else quite interesting in common in this study — 77 percent of them also had sleep apnea. And I thought only overweight old men were prone to this disorder. They found that when you have a spinal cord injury, your sleeping can be directly affected. Those with sleep apnea had both the obstructive sleep apnea and central sleep apnea, but central sleep apnea was more common among those with cervical spinal cord injury.

Central sleep apnea is more rare, as it is caused by signaling problems between the brain and diaphragm. When you have sleep apnea, you stop breathing for a moment, which of course is highly dangerous. Treating sleep apnea is no fun either, as there is no fantastic treatment available yet. Sleeping with the proper oxygen mask at night is the only solid option.

In my own life, I’m pretty sure I don’t have sleep apnea … or maybe I do? It would be interesting to see what they find out at a sleeping clinic. Now that I’ve seen this study, I’m more interested than ever in discovering the true culprit behind my sleeping problems. Who knows, maybe I really do have sleep apnea?

Thank God for health insurance and having the option to consider a sleep study. Now to find a wheelchair accessible sleeping clinic … and in the meantime, brew more chamomile tea.

How do you sleep at night? Have you been diagnosed with sleep apnea?

Read more:

Breathing: CPAP for Sleep Apnea, New Mobility

Sleep Apnea Common Among Spinal Cord Injury Patients, The Huffington Post

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