Scary Night

My 23-year-old autistic son with epilepsy came into my room around midnight (almost four hours ago) and quivered out, "Mom, keep an extra special ear out for me tonight. I think I might have a seizure".

So, here it is, almost 4:00 a.m., and I have checked on him three times. I don't sleep much anyway but still...

Hoping he doesn't have anything but a good night of sleep.

(Pic from the first time he ever saw the ocean...Oct 2018.)

Seizures and Sleep

Many people who have seizures often have troubles sleeping in the night. This can, in turn, create more seizures because your body is not working at its peak without proper rest.

Here are a few suggestions:

-Limit naps, making sure you don’t sleep past 2:00.

-Do nothing stimulating 1-2 hours before going to bed. That includes TV, loud music, arguments (!), video games, etc. Instead, read some calming poetry, have a quiet conversation, listen to classical music, do yoga or meditate.

-Take a warm shower. Do NOT take a warm bath because as someone with seizures, you should not be in the bath EVER alone.

-Do whatever you can to clear your mind. Avoid thinking about what you need to get done, or worrying about whether you will get some sleep.

-Try drinking some calming hot tea shortly before bedtime. I use SleepTime Extra or Chamomile.

-Go to bed at the same time every night. If you don’t fall asleep within 30 minutes, get up and walk around for a little while, then try again.

-My son takes Melatonin almost every night. It doesn’t always work, but often enough to help him get some rest.

-My son also sleeps with three fans on (white noise), an actual white noise machine, a radio on playing a station with only classical music, and a nightlight.


If all else fails, see a sleep clinic. They will want to do a sleep test to see if you have issues that prevent sleep, like sleep apnea.

Above all, don’t stress. That will just put more pressure on you to sleep.


What are some tricks that YOU use to sleep? Please note in the comments.

Safe Sleeping

When Weslee, my son, first started having seizures, the tonic clonics (grand mal) often happened first thing in the morning...just before awakening or as he awoke. I once found him pressed between his mattresses and the wall.

He was sleeping downstairs at the time, but soon after finding him in that awkward position, I made him move back upstairs.

If your kiddo has sleeping seizures too, here are a few things to keep in mind:

1. No pillows, stuffed toys, extra blankets etc on the bed. If a twisting motion is made during a seizure, the child could suffocate. Research: SUDEP.
2. Some parents have the child sleep with them. It makes it easier to listen to breathing, or lack thereof, feel the bed vibrate with convulsions, and in general experience a slight bit of relief knowing you are right there.  This doesn't work for everyone, especially when older children are involved.
3. Get a bed monitor. Although many epileptologists (neuro docs who specialize in seizures)  won't actually recommend them as efficient, just as many parents swear by them.  Explanation: a special pad is placed under the top mattress. If it detects unusual vibrations, like convulsing, an alarm will sound and/or be sent to a cell phone.
4. Pulse/ox detector: I am in the process of getting one of these for Weslee to wear at night. He tends to stop breathing during his TCs.
5. SmartWatch: Same as the monitor. Physicians won't recommend it often but it often catches electrical spikes and will alert to your cell phone.
6. Pad around the bed.  The last time I bought a bed for Weslee (last year, at age 22), I got one with a trundle.  At night, he pulls it out on one side, and in the other side we unfold one of those cushion chairs to be like a mattress.  When he falls off of the bed, he lands on softness. No black eyes yet!

What else can we do to keep our kiddos safe at night?

Caregiver Sleep Problems

I've spent a lot of time lately talking about epilepsy.  It is always on my mind, consciously and SUBconciously.  I mean, most of Weslee's tonic clonic and clonic seizures happen in the late night or early morning. 

He had his first tonic clonic (grand mal) seizure in April 2011, just one month after he got diagnosed high functioning autistic. That's over eight years ago.  Eight years of split attention and only the lightest of sleeps. 

Most people won't understand this.  Hell, sometimes my own doctors don't get it! I started missing time a couple of years ago.  Memory failing. Didn't say anything to anyone, not really.  But after a year or so, I did bring it up at a doctor's office.  The PCP sent me to a neurologist who ran an EEG right then, and told me I have a blip on the EEG, probably seizures, and immediately prescribed Keppra.

I'm thinking ... what???

I didn't take the pills but I did make an appointment with my son's neurologist.  Second opinion.  Did another (longer) EEG that didn't show anything unusual.  They advised me to NOT take the pills, and to see a sleep specialist.

That doctor said I should have a sleep study.  I said I already know I have insomnia (can't get to sleep), hypopnea (can't stay asleep), restless legs syndrome, and sleep apnea.  Wanted to get me on a CPAP machine right away, but I poo-poo'd that.  Um, very firmly.

Caregivers will understand why.

If I am attached to a CPAP machine, I won't be able to hear Weslee have a seizure.

Plain and simple.

So since the doctors now understand that I will NOT wear a CPAP machine, and that my memory and missing time problems are sleep related, I need to come up with another idea of how to best manage my sleep-time.

But it's not just that.

Honestly (and I've only mentioned this to one other person in the world), I am terrified to go to sleep.  I force myself to bed around 2:00 or 3:00 a.m.  Sometimes I still can't sleep, and when I do, it's restless.  A crack of thunder, or a train on nearby tracks wakes me. And sometimes it's Weslee throwing himself across my legs on the bed as he falls into the seizure (he sometimes has 30 seconds or so of an aura, or warning.)

But ... my fear is .. If I sleep, and sleep deeply, I won't be able to hear Weslee have a seizure. And he could die, especially since he twists his upper body during a tonic clonic, and ends up face smack down on the pillow. SUDEP = sudden unexpected death in epilepsy.

And I just can't lose him.

So my conundrum is ... I need sleep. I want sleep.  But I can't allow myself to. Not like most people sleep.

Maybe I should start taking naps during the day, when Weslee is less prone to having a big ole seizure.

Now... I know I'm not alone in this.  I have chatted online with other caregivers, and have come across insomniacs in my research for my book.   Anybody care to mention what they do about this problem?

Okay, it's after 3:00 a.m.  Gotta gotta gotta get SOME sleep.

Have a great night, people.