Why Bedtime Can Be Terrifying

How can you sleep when the PANDAS bear follows you to bed?
How can you sleep when the PANDAS bear follows you to bed?

Tap, tap, tap.

It’s 2 AM, and someone is at my bedroom door. I bolt awake and hold still so they don’t know I’m in the room. I slowly reach for my phone and think about texting my parents to come help me.

But I’m all alone. No one is at the door.

I’m hallucinating again.

I try to tell myself that what I heard wasn’t real. I try to tell myself that my brain is playing tricks on me again. But no matter what I do, I’m afraid. I may be twenty years old, but sometimes, I still ask my mom to sleep in my room because falling asleep can be so frightening.

When I’ve been at my worst, my hallucinations have also happened while I was wide awake. Usually, these hallucinations were just colored blobs floating around me, but the first time it happened, I was twelve and too scared to tell anyone, so I wrote about in my journal:

Journal Entry

“I was lying in my bed… When I looked at the lower left hand corner of the bed, I saw a clearish thing with two black dots, about two inches from top to bottom. I think I saw a spirit of some kind. Be it an angel or a fallen angel or something else that I’m unaware of, I don’t know. I’m a bit freaked out right now.”

If you think seeing “spirits” around my bed or having an auditory hallucination of someone knocking on my door is terrifying, last fall, I woke up at five o’clock in the morning with a giant black bear snarling at me next to my bed. In the moment, it was completely real to me, and I screamed. But I quickly realized the only bear in my apartment that night was the PANDAS bear in my brain…

More recently, if I’ve hallucinated, they’ve been mild auditory hallucinations such as the tapping noise at my door, and they only happen while falling asleep or waking up (hypnagogic or hypnopompic hallucinations). Now, I’ve managed to go several weeks without a nighttime hallucination, but I still worry about it happening sometimes.

Right now, what makes bedtime so difficult is that, for the first hour I’m in bed, I often go through periods of being half-asleep and then suddenly startling awake. My thoughts begin to turn into half-asleep dreams, and out-of-nowhere, a troubling (and often irrational) idea comes and disturbs me so much that I wake up:

Oh no! I say to myself. I must not believe in God anymore.

My eyes spring open, and I try to talk myself down from the troubling thought: It’s just my OCD. It’s not true. I can’t decide anything about my faith in a state like this. I need to just go back to sleep.

A few minutes later, I fall asleep, and it happens again:

Oh my gosh! What would’ve happened if I’d fallen off that cruise ship I was on five years ago?! I could’ve died.

Just as I’ve calmed my mind and gone back to sleep, I’m bothered again:

Wait a minute… Did I really pass all my classes this semester? Wasn’t there something else I needed to do?

The first week after my tonsillectomy, after a couple days when the swelling went down, I had no trouble falling asleep because of the narcotics. Now that I’m healed and off the pain killers, I’ve had less nights of startling awake with fear, but I still wake up more often than I should. Bedtime still isn’t easy, because I’m still anxious about getting in bed in the first place.

The way I see it, bad things happen in bed… My OCD onset happened when I was eleven while I was in bed. My worst panic attack ever and the start of my chorea movements happened last summer while I was in bed. I’ve seen growling bears and floating “demons” while in bed. I’ve woken up with my arms completely numb and paralyzed in bed. I’ve woken up screaming for no apparent reason while in bed.

Sometimes, I think a lot of the anxiety I experience now isn’t a symptom of my disease anymore so much as a consequence of having lived with it for so long. How could I not be anxious about a part of my day that has been so unpleasant for me for so many years? How could I not worry about frightening hallucinations happening again?

Earlier in the summer, my nighttime symptoms were so bad that my psychiatrist wanted me to take anti-psychotics before bed. But now, I think the best thing for me is to work through the anxiety and relearn to think of sleep as, not a time of torment, but a time of rest.

7 thoughts on “Why Bedtime Can Be Terrifying

  1. I’m so glad you posted this. My oldest has experienced similar symptoms and now I understand what he goes through a bit better.

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  2. I have similar issues regarding sleep, and I too avoid sleep because i associate it with stress, anxiety, and generally an unsafe experience. Your post has reminded me not to normalise it … Have you tried CBT? I’m thinking about that now as a way of breaking associations/habits…. Thanks so much for sharing x

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    1. Glad you liked my post. I’ve done a lot of CBT for my OCD, but I haven’t done too much yet for my sleep issues. I think it’d be a good idea to start doing more of it for them, though. I know how much it helped my OCD, so I think it could definitely help with sleeping… I hope it helps you, too, if you try it! Thanks for the comment.

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  3. I hope your thoughtful introspection is as helpful to you as it is to those of us who read your posts! I so appreciate that you share these powerful, insightful experiences with the PANDAS community. Although the way PANDAS’ symptoms present seems to vary significantly from person to person, we can all learn so much from hearing about the symptoms and treatment methods and how even one person interprets their circumstances.

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    1. I’m glad you find my posts so helpful and insightful! Sometimes, my introspection is also very helpful to me, but other times, I can take my ability to analyze every situation too far, and it turns into an OCD mess. Writing helps me not do this, though…

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