It’s week #13 of Beckie’s mental health prompts series Working On Us at
The topic for this week is sleep, insomnia and other sleep disorders. Here are the questions for prompt #1.
- Have you, or do you suffer from sleep disorders? – I have a lot of sleep issues, which are both related to my mental health difficulties as well as the fact that I don’t see the light so my sleep cycle is just messed up. They change with time. Just as I sleep at different times and my sleep schedule and habits change, so do my sleep related problems. Most of the time I struggle with insomnia more or less. It is my normal to lay in bed for an hour or longer before I fall asleep. Sometimes I wake super early, like 3-5 AM and after going to sleep at about midnight. Luckily it’s not as often as it used to be for me that I have, as I call them “Zombie days” – a day after a night of no sleep at all. – Sometimes my insomnia is clearly due to anxiety or stress and I just overthink everything and worry about every single thing and ruminate, it’s gotten worse recently, but sometimes it’s like my inner clock just isn’t set on sleeping whatsoever and I may even feel a bit hyperactive, playing with Misha at 2 AM and not feeling even slightly tired, and then sleep until noon or so. Then I have times when I sleep a lot, 12-13 hours and usually miss a great chunk of the day as a result. Sometimes it just comes on its own, and then I hate it, because I don’t want to sleep my life through like that, and feel lazy and lousy, plus then it’s usually not the best kind of sleep, filled with bad dreams and such. But sometimes I do that on purpose because I’m so depressed and sleep is way more interesting than the reality. I suppose I might have non 24 hour sleep-wake disorder (what a grossly long name) which is very common among the blind, but I haven’t ever heard about it being diagnosed in Poland so I guess people don’t know much, and while I know there is medication for that in other countries, I couldn’t find the evidence that it is used over here, so I don’t see the point in seeking a diagnosis. I have very vivid dreams, which can be an incredible gift and a really great thing, I love my good vivid dreams, but it can just as well be something close to a curse, because my nasty vivid dreams are super creepy, as if I had a personalised horror movie production studio in my brain, with horrors right just for me. π I’ve read that there was some Danish study which revealed that apparently blind people have nightmares more often than sighted people do, which would make sense from what I’ve heard from many blind people. If you have vivid dreams things get just a bit more intense. And on top of that I am one of the lucky ones who regularly struggle with sleep paralysis. And that’s probably the biggest sleep related problem for me. There is also my silence anxiety and sounds anxiety involved, which makes sleep often difficult. I won’t get into detailed descriptions of what it is for me but, very shortly, I just don’t do complete silence, so I need to have some quiet music in the background, and Misha, and it always works, but to a very varying degree.
- Have you sought treatment for your sleep disorders? – I had a point in my life where I thought I was unable to take this sleep paralysis thing any longer, I was so fed up and constantly scared and I just lost my patience with it. It’s something that I’ve lived my whole life with but suddenly I had that “why me?” crisis. And then I went to the neurologist looking for some help, also because I wasn’t perfectly sure it was sleep paralysis, because some things in it are different for me than they are for most people whose stories I read. She confirmed that and gave me some tips on things that I could do myself to alleviate it, and told me that there’s no medication that would be 100% working for it, but that she could put me on some antidepressant that is said to help with that, though it’s not certain how effective it is and it’s mostly prescribed for people with narcolepsy who additionally suffer from sleep paralysis. Since it’s not clear if it actually works, I said I’d rather try dealing with it without medication first. I was also offered antidepressants by the psychiatrist who diagnosed me with dysthymia but I’m honestly pretty scared of some of the side effects like gaining weight. I’m currently underweight actually and could probably put some on just to stop my Mum’s grumbling and make buying clothes less tricky and look healthier, but I wouldn’t like that to happen because of taking medication. And so far I am managing with just anti-anxiety meds. I’ve learnt over the years some tricks to get out of sleep paralysis or to prevent it, but it doesn’t work all the time. Sooner or later it will always catch me.
- Have you ever had a sleep study on you, and if so, what was recommended? – No. I would kind of like have one though, and my Mum says I should, because, in her opinion, my sleep is weird and I should get it checked out if not because of any concerns, then at least out of curiosity. And yeah, it’s interesting, I am curious, though I don’t know if my sleep is objectively that much of a phenomenon, I guess not, my Mum is just very typical. I’ve never had an opportunity though, and I don’t think there is any sleep clinic in the area or anything like that, I don’t know anyone in person who’d have a sleep study done.
- Has your doctor prescribed medication for your sleep disorder, if so, what has worked for you? – Not directly for sleep, mostly for anxiety, but that has affected sleep too. I took Hydroxyzine for a while as a child, and then my psychiatrist put me on it again when I was 17 and got the reactive depression diagnosis and told her about the anxiety I was having. I’ve always heard good opinions about Hydroxyzine and that it works well for people, that it’s such a safe medication and all but it wasn’t so for me. It was making me extremely groggy, I would be just switched off and away from the world for hours and hours and hours, the only thing I could do on it was sleeping, and then I would wake up hungover and with a headache. Perhaps it was because I hate being groggy and foggy and not in control and thus my anxiety got worse, but in any case, I really didn’t feel like it was working for my anxiety at all. The only times when I have found Hydroxyzine very helpful, life-saving almost, have been when I felt really depressed, only feeling like sleeping, or very unstable and overwhelmed, like last year after the first of my final exams when I was super triggered I just slept the whole night and most of the day away on Hydroxyzine afterwards, worked the trigger through while sleeping and woke up (almost) a new person, (almost) ready to face another final exam. Hydroxyzine is also an antiemetic, so when my emetophobia is through the roof and for a very sound reason – like a norovirus raging in the house – it helps too. And I don’t mind sleeping norovirus invasions through at all. I still have it and can take it when I need but that’s rarely. I don’t see my psychiatrist regularly, so after some time I went to my GP with my anxiety problems and told him the whole Hydroxyzine and anxiety and messed up sleep story, and he put me on Afobam, which as I heard later from my psychiatrist is more suitable as a sleep med for those people who tend to wake up a lot rather than those who can’t fall asleep, as is more often the case with me, but it works great for me so I’m still on it. The thing is, it’s highly addictive so I am only taking it on as needed basis. That is, when my anxiety is really severe or when I want to regulate my sleep cycle at least for a while or when I just know I won’t sleep and I have to sleep. If I need it for a few days in a row I take only a half of it. That’s not a perfect solution definitely, but at least when I take it, it works. I often do feel groggy after it and sleep for a long time, but I don’t feel hungover like after the Hydroxyzine and it noticeably improves my sleep quality, I wake up refreshed and well-rested most of the time.
- Have you ever tried home remedies to alleviate your sleep disorders? – Loads of herbal-based supplements and some other OTC products that worked just as well as candy, melissa tea which apparently is placebo, melissa essential oil which apparently works very well but not for me, smelling lavender which probably didn’t work because my sense of smell doesn’t work too well either haha, CBD oil which I am still trying but with no great results, I guess the concentration is too low or something, I’d like to believe that it works, niacin, which I really tried supplementing and wanted to but as high doses as they say that you should take for mental health were not doable with me because those pills are really big and I have a bit of a trouble swallowing big pills, let alone five or more at a time, and even when I broke them into halves or thirds it was still tricky to swallow such amount of pills in one go, it was crazy. π I was able to notice some small improvement on it but I just couldn’t continue this way, my life would evolve around swallowing niacin three times a day and dosing it the right way, and then they say for it to work you need to take other stuff too, because it changes the absorption of vitamin C, and the niacin itself is absorbed better with something else. Ugh no thanks, my life is way more interesting without all that, and what if that cocktail wouldn’t work? All my efforts would be wasted! π Also, I am trying out progesterone cream which also my Mum is using, which has directly nothing to do with sleep obviously but my Mum, being a great lifestyle geek has read loads of material on how helpful progesterone supplementation can be for women and also how much of an effect hormonal imbalance can have on mental health, and my hormones aren’t balanced even just because I have hypopituitarism. My Mum says it works miracles for her, though I guess for her it’s a bit different since she’s going through menopause so that must be rather obvious. I can’t say much on that cream though because I’m only using it since July, and it needs some time to have noticeable effects. What helps me is Misha, listening to music, reading before sleep, doing some visualisation exercises, prayer, having my feet warm – they’re usually cold so I like having hotwater bottle and when it’s cold outside I won’t fall asleep without it ever π – trying to implement some sleep routine, though for me that’s really really difficult and never stuck for long, I am trying though, so I hope that counts and makes it better than it would be without it. Doing something relaxing always helps, whatever I find relaxing at the time. Oh, I nearly forgot, I also had numerous trials and errors – more of the latter – with melatonin, which at first didn’t work, and then every time I got back to it I had very nasty nightmares every night I was on it. I’ve heard that could be transient, but no one told me how long that transience should last and every time it felt like a bit too long to keep trying and waiting so I don’t think I ever will again. With my sleep paralysis, good sleep hygiene and some sort of a routine/schedule helps. I can’t always have the latter, but what I’ve found helpful is not napping, though I was never an enthusiast of naps at all, they just make more chaos. No napping, and no laying in bed awake in the morning for ages, as I carelessly used to do especially at weekends. Suddenly, after a while I become surprisingly, extremely sleepy again and I don’t even notice when it sucks me in. Also, generally I know I need to avoid such things like waking up and then going back to sleep after a while, because that very often brings sleep paralysis. But I never know how long that while should be, seems like even half an hour break between one sleep and another at night is too much and is risky, so if I want to avoid sleep paralysis I should just get up and start to live. Of course, that’s not always practical, because even if I wake up at night I may still feel like I need more sleep, or will be very tired during the day if I’d just wake up and start my day in the middle of the night, so sometimes I do this, but sometimes I don’t. The neurologist told me that sleeping on your right side helps with sleep paralysis. I laughed at it internally and thought it must be some superstition, the more that I much prefer sleeping on my left side, it’s just comfier and I read about some weird study that has shown that it helps the brain to clear from all that could be potentially toxic while you sleep, and I’m all for keeping my brain healthy. But it makes some sense. Sleeping on my right side, as I’ve noticed so far, won’t prevent sleep paralysis if it’s inevitably going to happen, but it’s less intense and shorter. The worse is when you sleep on your back, and that seems to be the case for most people. I hate sleeping on my back but it used to be the position I laid in when awake most of the time so then it hit me hard, now I try to avoid it if I can.
- Β Β Whatβs the longest amount of time you went without sleep? – Thankfully only a bit more than 2 days. The good thing about my insomnia and Zombie days that I feel really lucky about is that I don’t have it the way some people do, that I would go on for days without sleep. If I have a Zombie day, it’s awful, but at least it means that at night I will fall asleep like a baby, and, usually, sleep like a log until early morning, and my sleep cycle will reset nicely and will be really decent and in line with my time zone for a while. Unless I am trying to play a hero and by night am so exhausted that my nervous system just gets overloaded and I can’t fall asleep despite you can’t really say I’m fully awake and sane by then.
It’s just uncanny how much of this I can relate to. I wish you could regulate your sleep-wake cycle! Because I remember the frustration of not being able to sleep when I wanted to (i.e., bedtime), and it was just awful.
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I’m glad you could relate to so much of it. π I think the frustration regarding not being able to sleep at bed time isn’t as much of a problem for me now as it used to, I’ve mostly accepted my quirks around that, the more that right now I am having a very flexible lifestyle and I am the one who decides what I want to do and when, which is very confident if you have a constant jet lag. It is only a real frustration when it seriously gets in the way of my life at times. Oh, and btw, I guess I had to evoke something with that post, as it’s a Zombie day for me. I am no longer as Zombie as I was in the morning though, at some point I just gave up and napped so it’s not tragical.
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Ohh! I’m glad you’re no longer zombified!! That would really bite!!
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Iβm so sorryyou have to deal with so many sleep issues. I can relate to some of them, though, having light perception, Iβm not sure I have that non-24-hour sleep/wake cycle thing.
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It’s not like only those who don’t have the light perception can have non 24 sleep-wake disorder, if that’s why you have doubts. I don’t know many people who don’t see literally anything, and it seems like most blind people have sleep problems. And I’ve heard sighted people can have this disorder too.
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OH okay, thatβs interesting. Iβve never had any type of assessment of my sleep, so I have no idea where Iβm at with respect to this.
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Hello, Emilia!
I found your story to be extremely interesting. Even Carol Anne’s story is quite interesting to me as well. I can only imagine that it is much more difficult for the blind to find a better sleep remedy than those with sight. I myself, take 50mg of Hydroxyzine along with 300mg of Trazadone, .15mg Clonazepam, 50mg of Seroquel, and 10mg of OTC Melatonin all before I fall asleep at night, and there are still times that it’s difficult to fall asleep. I also take 150mg of Lamictal to keep my even more level with anxiety. I tend to listen to sleep hypnosis apps before I go to bed. The visualization helps a great deal, and I have noticed that my dreams are less vivid and scary at night as well. I’m including the app I listen to calm my mind from racing or intrusive thoughts. Hope that this might help you.
I really appreciate you sharing here on Week #13 of “Working on Us” – Please let me know in the future if the app has worked for you.
Take very good care of yourself!
Beckie π
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That’s a lot of medication you’re taking for your sleep, but I’m glad it mostly works for you, if I was to take a combination of so many meds I feel like I’d need a guarantee that it’ll improve at least something. Thank you so much for sharing this app, I’ll see how it works tonight, I could definitely use some help with my nightly overthinking marathones. Will let you know if something changes. π
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Yeah, I take enought to knock a horse out. LOL! The video is soooo relaxing, I really hope it works for you. π΄
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I had a peep into it and it does seem very relaxing. π
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I never make it to the end of the track. It’s just that relaxing.
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Really?! Must be really effective. I’m very curious to try it out.
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There is also another app that is made by “The Honest Guys” that has different types of meditation apps. However, I know they have others for sleeping as well. Check it out.
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I will. π
I listened to this sleep hypnosis app last night and slept really well. Granted that I had a Zombie day, and took medication before sleep, but still, all of it in combination knocked me out immediately haha. Will have to see tonight if it works as well when I’m not as exhausted.
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I listened to it last night. I was a little afraid of not being able to fall asleep last night, because I took a 3 hour nap in the afternoon.
Yet, I was out cold before 1am. I love that app. I recommended it to Carol Anne too.
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Wow, it must be really helpful! π
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I think it is. I hope it works for you this evening as well. Good luck!! π
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Thanks. π
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Reblogged this on Beckie's Mental Mess and commented:
REBLOG: Emelia of “My Inner MishMash” has participated in Week #13 of “Working on Us” – A very interesting account for what it’ like to be blind and suffer from several sleep issues at once. A good read. π
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wow! you got a ton of sleep issues to deal with!I feel for you! I am glad you’ve found some things which work! xoxo
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Thanks. π Yes my sleep can be a problematic thing indeed.
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I have to say that you’re probably the most self-aware person I know. You remind me of me. π
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Haha thanks! π I personally don’t consider myself very self-aware at all to be honest, but I’m an introspective overthinker so perhaps you’re right, after as much thinking as I do I probably should have some awareness. Perhaps I’m just not aware I have it. π
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Here’s another thought I had just after I sent that comment. That it’s one thing being self aware (and there are probably plenty of people that are) but it’s another thing entirely to be able to express that awareness as well as you do. Anyway, if you weren’t aware before, you are now. π
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Thanks. π
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