Join the Conversation on
196 people
0 stories
60 posts
About Sleepwalking
Explore Our Newsletters
What's New in Sleepwalking

Living with Narcolepsy

I started showing symptoms of Narcolepsy when l was twenty-six. I am now approaching 68 and, fortunately, don’t have cataplexy. Every day is a struggle to appear normal. I have tried every narcolepsy medication available, and there hasn't been one with long-term benefits. I was in the modafinil trial, and it has never worked since it has been available. Xyrem worked well until I started sleepwalking and broke several bones. Now I need a shoulder replacement because of my last sleepwalking fall.
I have so much empathy for all of you who struggle through life. My life is more challenging now than it has ever been. I experience the depression, sadness, and grief many of you share. I wish I could say things will improve, but there is no guarantee.
For those of you wondering, yes, I have tried everything through the years. Acupuncture, well, you name it, and I have tried it


Today was really hard

I'm 34 today.

What should be a cause for some celebration - which I initially felt - quickly dissipated after a minor inconvenience swept me off my feet and I slid down a steep heater skelter.

I'm receiving well wishes and positivity from those closest to me, but what is there to celebrate? Collective amnesia sweeps a nation sleepwalking towards a fascist dystopia; the cost of existing is far more than we can afford; the sun feels a little too hot and the breeze feels a little too cold; the earth is edging closer to becoming terminal whilst we proceed to destroy each other and our home in the process.

My heart feels heavy but what is a person to do if they don't trust others enough to share the load?

I smile, and get on with it; after all, keep calm and carry on - Possibly the worst advice someone can receive.

I hope tomorrow is better.


It's a Drag.

I have struggled with this many years. I drag myself outta bed bc I'm not getting my sleep. Stress causes mind-racing, RLS, and the up-all-night syndrome. This only feeds into other health issues and makes everything worse. I use to take Ambien over 20 years ago. However, it's addictive and I should never have started it. But this and other pills aren't worth the risk. It is not uncommon to wander outside sleepwalking while on this and other drugs for insomnia. I'd rather be tired and deal with more seizures. However, I also live alone and my nocturnal seizures can also have the same effect. I'm caught in a bad cycle and it's the Pitts!


Hi! I’m new here!!

And I fell around midnight. Apparently I was down in the kitchen sleepwalking when somehow I fell backwards into the wall. I’m afraid to tell my boyfriend. I have a fear that he will finally have had enough and leave me. ( it’s an irrational fear because he is always here for me and loves me. He helps me every day) Anyway, my tailbone is killing me as well as my right leg. I have been falling more and more often and that scares me. Can anyone relate? I know I haven’t mentioned my chronic illnesses yet and I will do that in another post, I just need to vent a little and for that I’m thankful 💜 #ChronicIllness #MultipleSclerosis #Anxiety #Depression #Nerve and joint pain #BackPain #ChronicPain #PTSD


Explaining my depression to my mother: a conversation - by Sabrina Benaim #Poem #Depression #SabrinaBenaim

Mom, my depression is a shapeshifter.

One day it is as small as a firefly in the palm of a bear,

The next, it’s the bear.

On those days I play dead until the bear leaves me alone.

I call the bad days: “the Dark Days.”

Mom says, “Try lighting candles.”

When I see a candle, I see the flesh of a church, the flicker of a flame,

Sparks of a memory younger than noon.

I am standing beside her open casket.

It is the moment I learn every person I ever come to know will someday die.

Besides Mom, I’m not afraid of the dark.

Perhaps, that’s part of the problem.

Mom says, “I thought the problem was that you can’t get out of bed.”

I can’t.

Anxiety holds me a hostage inside of my house, inside of my head.

Mom says, “Where did anxiety come from?”

Anxiety is the cousin visiting from out-of-town depression felt obligated to bring to the party.

Mom, I am the party.

Only I am a party I don’t want to be at.

Mom says, “Why don’t you try going to actual parties, see your friends?”

Sure, I make plans. I make plans but I don’t want to go.

I make plans because I know I should want to go. I know sometimes I would have wanted to go.

It’s just not that fun having fun when you don’t want to have fun, Mom.

You see, Mom, each night insomnia sweeps me up in his arms dips me in the kitchen in the small glow of the stove-light.

Insomnia has this romantic way of making the moon feel like perfect company.

Mom says, “Try counting sheep.”

But my mind can only count reasons to stay awake;

So I go for walks; but my stuttering kneecaps clank like silver spoons held in strong arms with loose wrists.

They ring in my ears like clumsy church bells reminding me I am sleepwalking on an ocean of happiness I cannot baptize myself in.

Mom says, “Happy is a decision.”

But my happy is as hollow as a pin pricked egg.

My happy is a high fever that will break.

Mom says I am so good at making something out of nothing and then flat-out asks me if I am afraid of dying.


I am afraid of living.

Mom, I am lonely.

I think I learned that when Dad left how to turn the anger into lonely

The lonely into busy;

So when I tell you, “I’ve been super busy lately,” I mean I’ve been falling asleep watching SportsCenter on the couch

To avoid confronting the empty side of my bed.

But my depression always drags me back to my bed

Until my bones are the forgotten fossils of a skeleton sunken city,

My mouth a bone yard of teeth broken from biting down on themselves.

The hollow auditorium of my chest swoons with echoes of a heartbeat,

But I am a careless tourist here.

I will never truly know everywhere I have been.

Mom still doesn’t understand.

Mom! Can’t you see that neither can I?

See full photo

Grow Friday

Owen woke up numerous times last night. The first time before midnight. I do not know how I got him to go back to his bed, which he still calls “mommy’s bed”, but he went right back to sleep. I keep wondering if he wasn’t sleepwalking. He woke again a couple of hours later. This time the only choice was sleeping on the couch. Not much sleeping for me but luckily he fell right back asleep once we were on the couch. I try not to talk to him too much because it can wake him up even more and it either causes meltdowns or for him to want his tablet. Neither are great ideas. When he woke to go to school he was happy. He wanted “two more minutes” to do everything but we had the time. He doesn’t completely understand the timing he is suggesting. He will say he needs two more minutes, then go to ten more minutes, quickly changing it to one minute. He knows that if he keeps asking or he thinks telling me he will get his way. Sometimes it’s about him processing what’s happening and other times it’s strictly about the fact that he doesn’t want to go to bed or the potty. The potty has become a problem again, not wanting to go unless he wants to go. He’s done well for months and then here we are at a brick wall again. My sensory kiddo has always struggled with it. When he got home from school he knew it was Friday and for the last few weeks we’ve gone to therapy on Fridays but I scheduled it for other days this week. I like to keep our routine pretty consistent but I also know that as hard as it is I have to change it up sometimes. I have to get him to understand life happens when you have something else planned. Now that sure is much easier said than done. Us not going threw off our whole night and caused Owen to scream at me for hours before he fell asleep. Why, oh why does it have to be so hard on him. He kept asking for all things routine. He wanted to make sure he was going to grandma’s and church and school and therapy and everything else that he wanted in his routine. I never know if I should keep answering the questions and if it fosters the repetitive responses. It’s how he holds a conversation with me as well but it can quickly spin into a meltdown. All I know is I want my sweet baby O to be happy. I asked him again today what he had for lunch and he kept telling me he had shrimp and spaghetti. I can’t imagine he had shrimp at school and he had spaghetti yesterday so I have a feeling he didn’t know what he ate was called or it was all too much for him to process when he was struggling already with his routine. I’m not going to dwell on that. Instead, I’m going to focus on him singing and coming to me for a big kiss on his forehead. Some days we both struggle but I’m thankful for when my son shines. I tell Owen all the time we are a team and together we will get through it all. Find what inspires you to move those mountains. Smiles to all and donut daze! #Autism


Bumps in the night #Bipolar1Disorder #Insomnia

I've had my first manic episode in a long time over the last month, or maybe it was mixed? Who knows?
I'm one of those people that no matter where I am on the spectrum it takes a truck load of tranquilizers and such to put me down. The only difference is how long I'm going to stay down.
They gave me ambien a few years back and it induced terrible hallucinations for an extended period of time.
In the last year I've started sleep walking? I've always been a sleep talker, but this is nuts.
It started with latuda. I do not look at the side effects, my son looked it up for me and it is indeed a side effect.
So we went back to Restoril. And I've started doing it again? I woke up this morning with a big knot on my head, so I didn't take it last night but I did take all of my everything else that should atleast make me sleepy a little... not at all.
Have any of y'all ever done this? #knotsonmyhead #miserable #Sleepwalking #tiredofthetorture #questions #CheckInWithMe #Mania #MixedState #somethingsgottagive

1 comment

Sleepwalking up

I have lately been waking up and disoriented. I have to focus on where I am. Oh yes I'm in my bedroom. Then I'm fine it just lasts for a minute. It happens at least 4 times a week. Anyone else ??? #Sleep



I’ve been thinking a lot about the significance of gratitude, especially for those with depression or anxiety. I always found it hard to be grateful for the amazing things right in front of me, because all I could see, hear, sense was the immense pain I was in. It is only now that I can see how much I was taking for granted whilst in my depressive state. I had forgotten that everything changes, that the universe is far too big and too great for my life to make a colossal difference in the grand scheme of things, and how my perspective had shifted massively. It’s almost poetic how the biggest problems some of us face have no real substance, meaning that they are ‘all in our heads’. I remember sitting alone, not so long ago. I sat at my desk for what felt like hours. And all I was thinking was ‘I do not want to be here’ and I would have given anything for a bomb to go off right next to me, or for someone to storm into the classroom with a gun. I wanted an out, and I had completely lost focus on anything else going on in my life. Sort of like sleepwalking. I had no desire to communicate with my friends, or to learn in my lessons, or sustain my body with food and water. I was completely incapable of gratitude because it felt as if the world had some sort of vendetta to make me unhappy. It was as if 'happiness' was just too high of a target to aim for.
I think it’s important that people understand how differently we see the world when we are mentally unwell. Telling people to ‘look on the bright side of life’ and to ‘think happy thoughts’ is quite futile, despite it being a nice sentiment. This is because, for me at least, I legitimately could not allow myself to be aware of my surroundings enough. Imagine going to an art exhibition whilst wearing a blindfold, with people telling you to admire the artwork. You really really want to, but there is no way to.
Through therapy and a lot of support from loved ones, I’ve begun to appreciate every small thing that happens. Sleeping in the attic whilst it rains. Eating ice cream straight from the tub. Training with my team. Even now, as I sit here writing this, my bed is comfy and my friend just messaged me to ask about my day. I accept that my life is going to be an uphill battle, and that some days I’m going to lose. But now, in this moment, I am so so grateful for how far I have been able to come.
#Anxiety #Depression #Recovery #CheckInWithMe