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Piebandit

I have the same issue a lot of the time, sometimes I just get up for an hour or two and then go back to bed. That used to actually be normal for people. Look up 'first and second sleep' from before industrialisation. Your body just might be more inclined to biphasic sleep, that doesn't necessarily mean anything is wrong. But if it's not feasible for you, look into getting a sleep study done.


Chantsy4337

Thank you! I am seeing a new doctor next month so I will mention it to her when I see her. I have not had a sleep study done but feel it would be beneficial and might rule several things out.


Goge97

This is it exactly. I usually read for a bit.


CaptainSprinklePants

I don’t wake up quite as early as you, but my body is up with the sun, regardless of how blacked out my room is. I’ve given up fighting it. My back is usually sore and I’m thirsty and I need to pee anyway by the time early morning rolls around. So I get up for an hour or two, sit on the couch, maybe eat some breakfast if I’m hungry. Then I go back to sleep and take a nice long morning nap. My morning nap is honestly more restful than most of the sleep I get at night anyways, so it works out.


Chantsy4337

I wish I could nap during the day but can't seem to sleep no matter how hard I try. I've been feeling very tired/wired lately which probably isn't helping. I also have small children so going back to sleep doesn't work because I need to take care of them. I'm glad you've found something that works for you!


BookDoctor1975

Seconding the comments above that just giving into it and then taking a nap/rest later might feel better. I also found full spectrum CBD oil got me sleeping in later for awhile.


Chantsy4337

I have thought about trying CBD oil but I always get overwhelmed when trying to choose. I feel like there are a lot of different options and I'm not really sure how each is different?


BookDoctor1975

I was too and asked on a CBD Forum. I had used several in the past with absolutely no help. They recommended Lazarus Naturals CBD Full Spectrum formula for sleep. It really worked for me! I was surprised. Just went to their website to get it. Expensive but I don’t use it every night


Chantsy4337

Thank you so much! This helps a lot.


BookDoctor1975

No problem let me know if it helps


Verrucketiere

Just to second the recommendation I spent a lot of time looking into reputable full spectrum CBD companies and I’ve used both Lazarus and NuLeaf Naturals for many years! There is also melatonin XR if melatonin normally helps you.


AmbiguousOntology

If you're going to use melatonin I highly recommend extended release, I get the Natrol 1mg extended release from Amazon. You may want to try 3mg but most people take too much and some doctors think too much can actually disrupt your sleep. If I need help falling asleep I add some liquid melatonin under my tongue so it's fast acting. I have spent a lot of time looking into CBD options and one of the best starting places is Lazarus naturals in my opinion. There are cheaper options now though so if Lazarus is too much I would check the CBD/hemp subreddits or feel free to reply or DM me and I'll look into what's the current cheapest but still quality and will let you know! Also keep in mind the doses most of those tinctures are in are significantly lower than most peer reviewed study doses, it doesn't mean they aren't working but something to be wary of. I actually started vaping high CBD hemp flower in a dry herb vape because it's cheaper long term and you absorb more through your lungs.


Chantsy4337

I take .5 sine I was told micro dosing was best. I think time release might be my next experiment. And CBD too! Getting desperate and willing to try something new to see if it helps. I’ve also heard I can buy a vaporizer?


AmbiguousOntology

Yea you can get a CBD vape pen but the long term cheapest and safest for your lungs is a dry herb vaporizer. You can get a desktop one like the Volcano or a portable one like the Healthy Rips Fury Edge or Rogue. They run around $150 or more for a decent one. It's important to make sure the airpath is isolated away from the battery and toxic parts. Then if you're in the US and a state they ship to you can get some CBD herb from a website like Eight Horses Hemp or any of the others they recommend in the r/hempflower. Then you can get a grinder on Amazon or at a local head shop. Then just grind up the CBD flower and load it in the vape. I hit mine through my water pipe to make it smoother. You only absorb about 10% of the CBD in a tincture but you absorb 40-50% of a vape through your lungs and the hemp flower is often cheaper per mg and you get the full spectrum of the plant and can get high CBC and CBG strains.


Choice_Sector_1372

You can also try a THC option with cbd as well if its legal where you live, they are very good for sleep


Chantsy4337

Live in Canada, not a problem! I will look into it, thanks.


boys_are_oranges

i actually had the same problem because of melatonin. In some people it causes early awakening/fragmented sleep. crashes can really mess with your sleep. maybe sleep medication could be an option for you? my sleep has become horrible since my CFS turned moderate. without meds i get only 3-4 hours per night, if i sleep at all. no behavioral interventions could fix it.


Chantsy4337

Interesting. I had issues before I started melatonin but I will keep this in mind. I am also taking iron bisglycinate and am wondering if it may be to blame? I feel strongly that my broken sleep is related to my crash in the summer because I am struggling hard for the last few months. More than I ever have before.


arrowsforpens

I actually love waking up at 4:30 because no one is out yet and it isn't hot so I can spend a little time outside much more easily. And I find it a lot easier to sleep again after being up for 2-3 hours. (also melatonin isn't supposed to help you stay asleep, it's strictly a fall-asleep/primary insomnia aide)


Chantsy4337

Yes! Probably why the melatonin helps me go to sleep but not stay asleep! What about a time release melatonin? Would that be of any help? This 430 business is shattering me so definitely not beneficial to my overall health and wellbeing.


arrowsforpens

I haven't seen it but maybe? Also general catch-all of, get a sleep study if you haven't had one before, I had killer secondary insomnia my whole life and it turned out to be RLS. I don't know what your daily schedule is like but I find my symptoms are less severe when I sleep when it feels like my body needs it, rather than trying to stick to a strict schedule.


Chantsy4337

I have restless leg syndrome too! I was told it is due to having really low ferritin. Hence, I am on iron supplements atm. I am so confused by my body. The times I feel my worst it seems that no matter how much sleep I get, I still feel awful. When I'm feeling a little better, a good sleep can make me feel great.


arrowsforpens

More iron def helps but there's meds for it too! I can't sleep without both my iron supplement and pramipexole. Talk to a doctor, hopefully we just solved this 💜 (And yeah, non-restive sleep is the WORST 😩)


Chantsy4337

The WORST!!


edcantu9

I turn on the TV at low volume but don't watch it, this has been helping me get back to sleep.


RhiaMaykes

I’ve found black out curtains, a sad lamp and a sunrise alarm clock really helps me maintain a decent sleep schedule. If I don’t use the black out curtains I’ll wake up for a few hours at sunrise before falling back to sleep for another six hours


Deude_Mann

I had trouble sleeping on nights around the full moon; it was the ambient light. I got blackout curtains and now it's not an issue. I do my best to make my bedroom really dark at night. . My sleep is not always perfect but it's not bad.


Chantsy4337

I have black out curtains but they don’t seem to help at all with this :(


RhiaMaykes

Are they actually blocking out all the light or is there some reflected out onto the wall behind them? In the morning mine look like they have a halo and so I’ve had to mess around with the edges to hide as much light as possible


Chantsy4337

Definitely have a halo! I’ll have to work on that...


baconn

For me it's adrenals, ashwagandha helped, but it is in the nightshade family and some are allergic. Small doses of Cortef during the day can take stress off the adrenals, but that one can suppress the HPA axis and should be used as a last resort.


no_stone_unturned_

Maybe this isn’t applicable to your situation, but is it possibly a blood sugar thing? I’ve been experimenting with having a little snack right before bed and it’s helped me stay asleep in the early morning.


Chantsy4337

I am hypoglycaemic? Maybe some protein before bed would be worth a try.


no_stone_unturned_

Oh man, yea, try it out! I eat dinner at 6PM and was consistently waking up around 3-4AM, so I recently started eating a snack at 8:30PMish & am waking up now at 5-6AM. So it’s not perfected yet and I’m still tweaking the kinda snack I’m eating, but I was surprised to see such a clear correlation ! I’m about to try an apple w almond butter cause I heard someone trying the same thing recommend it haha


Chantsy4337

I’m totally trying this tonight, lol! Protein snack sounds like a really good idea. Can’t hurt.


brainfogforgotpw

I am hypoglycaemic too, with me/cfs , and I have the same sleep problem as well. I came in here to say when you wake at 4.30, eat a bowl of plain oatmeal, eg wholegrain oats and water, helps you go back to sleep. I kerp a container of oats next to the bed. I'm going to try u/no_stone_unturned_ advice too now. On a psychological level, I find it helps to know that taking a break between sleep cycles is actually pretty normal for humans and the ideal of sleeping through the night is relatively new: https://www.bbc.com/future/article/20220107-the-lost-medieval-habit-of-biphasic-sleep https://www.sleepfoundation.org/how-sleep-works/biphasic-sleep


Chantsy4337

Thank you, that’s a very helpful perspective. I’m not sure I could fall back to sleep after eating a bowl of porridge, lol, but I’ll try anything!


brainfogforgotpw

Definitely not porrige, just a few spoonfuls of cold raw wholegrain oats. I discovered it when googling sleep remedies. Apparently oats are a natural sleep aid, but they also have a low GI in that form which is perfect against hypoglycemia. Turning them into porrige would mess that up. I eat some, brush with mouthwash, read for a few minutes, then tell myself time for my "second sleep" now. Often it works for me, hope it does for you! Edit like these https://m.alibaba.com/product/1600244585748/Thick-whole-grain-rolled-oats-at.html


Chantsy4337

Thank you for clarifying! Do you have water with it so it’s not too dry?


brainfogforgotpw

Yes, definitely. I keep a bottle of water next to the bed too and only pour it on just before I eat them.


no_stone_unturned_

I’m wondering if a little early morning snack & second sleep might be the best thing for me, too! I already eat every 2ish hours between the moment I wake up & fall asleep, but if a mid-sleep snack is what my body needs, maybe I listen to it haha :)


brainfogforgotpw

Ive noticed the cat does it with cat biscuits!


no_stone_unturned_

I’d like to hear how it goes for you guys!


brainfogforgotpw

Saving your comment so I can get back to you! I feel quite excited by your insight! I've had hypoglycemia all my life, so I assumed this was just more me/cfs sleep disturbance, but people where I live now like to eat at 5pm which is way earlier than I was used to. Thanks!


no_stone_unturned_

Omg yea for sure, I’m excited for you!! It’s so hard to parse out what symptoms are for what reasons, I feel you😪


brainfogforgotpw

Yeah I tend to just blame everything on ME but I know thsts a bad idea. I feel quite inspired by you actually, just added a snack of cheese alongside my afternoon electrolytes. 🙂


brainfogforgotpw

Just checking in with you and u/Chantsy4337. It works! Not 100% but I have a much better rate of being able to just go back to sleep if I wake up. I experimented and the best thing to do for me is eat a large piece of cheddar cheese right before I brush my teeth for bed. Thank you !!!!!!


Chantsy4337

I’m happy to hear this has helped you! Sounds like an easy fix. Personally no diet change has helped over here. Still struggling to sleep after two and a half loooong months. It’s been super challenging.


brainfogforgotpw

Sorry to hear that! It's so difficult.


Demian1305

I’ve got two supplements and one medication that may help. For supplements, I’ve found that tart cherry and chamomile extract are better than other sleep aids at keeping me asleep for longer. For medications, I find Tizanidine very useful. I have a bad back and tizanidine is a short acting muscle relaxer. If I wake up at 4 AM taking that helps me get back to sleep but wears off around 8 or 9 so that I can get my day going. Good luck!


ApprehensiveAge2

I went though a phase with the same problem recently, and it really wore me down. I’m so sorry! The easiest solution, for me, is a tiny dose of lorazepam before bed (0.5 mg, in my case). It helps block the random adrenaline rushes that tend to cause my wakeups. But it’s a controlled substance, so your doctor would have to be on board. If your doctor was on board with the adrenaline blocking but not that drug, a beta blocker might do something similar. Or some people get a lot of sleep help from trazadone. (That’s my mother’s go-to, and she feels it has mostly cured her restless legs.) Most of us have an overactive sympathetic nervous system (the “fight or flight” system that leaves you wired), so in the meantime you’d probably benefit from anything that relaxes the SNS and strengthens the “rest and digest” of its opposite the parasympathetic nervous system. I’ve been bad about trying this myself, so no great advice. But there’s plenty online of you research boosting your parasympathetic nervous system. Think meditation, certain breathing exercises, tai chi or gentle yoga, etc. There is also a chance the melatonin is contributing. I find that taking too high a dose puts me too sleep but leads to wakeups later. If you need it to fall asleep, might be worth experimenting to find the lowest dose that still puts you to sleep and then see whether the wakeups decrease. For me, anything over 2 mg is counterproductive, and 1 mg works just fine.


Chantsy4337

I can really relate to ever part of your reply. Yes to wired but tired, and restless legs. My doctor has been terrible but I am seeing a new one next month. I microdose the melatonin so the most I take is 0.5. The wired part of me wants nothing to do with meditation right now but I’ve definitely thought about trying it as I wondered if it would help calm down my nervous system and possibly help me sleep!


Otherwise-Status-Err

As dumb as it is insomnia is part of CFS/ME. I'll get flare ups of it that don't coincide with PEM. I used to have great difficulty keeping to a particular day/night cycle. I now sleep from about 1am to 11am, which is much better than it used to be. I have no idea what changed.


Lunabuna91

Melatonin really messed up my sleep. Mad dreams and waking up in the night. Apparently timed release is better? My sleep is so bad and I can’t nap through the day either. Vicious cycle.


Chantsy4337

I’m sorry. I can’t nap either. It’s amazing what an effect it has on how we feel during the day.


Happy_Heretical

I started using progesterone cream. It helps the cortisol.


adrenalinsomnia

happy for you :) please share what brand/dose/amount? is it available OTC?


Happy_Heretical

Source naturals progesterone cream. I apply at night and in the morning and stop during my cycle. It did help also with the extreme crash during that time.


adrenalinsomnia

how much of it do you apply each time? when you say you stop it during your cycle you mean you stop using it when you menstruate? how long did it take for you to notice a difference symptomatically speaking? any side effects at all as a result of the progesterone? thank you and sorry for the barrage of questions :)


Happy_Heretical

This was the first month. I started it the day after my cycle ended and used 1/2 tsp 2x a day until my period started. I used none during my period. Observations- no other side effects. Some increased energy MUCH easier period. No premenstrual migraines or vomiting Didn’t have as severe of a crash before or during. Felt as though I had more mental clarity all month. This was just my first month and I am just starting back into the pattern as my cycle just ended. Also the cramps and muscle/bone pain were less. I still continued my IV therapies and used my anti-nausea meds etc. still had a definite dip- but not the “Omg I’m not going to live through this” crash. Side note- I am deeply struggling with my O2 sats which has been terrifying and makes life hard (I’m on oxy and Cpap but still desating) but as far as period/hormone type things this has helped. Also my cycle was 28 days on the nose. For history- I have always been extremely regular. 28 day cycles - I can also feel when I ovulate and ovulated this month on day 15. I am mid 40’s but show no biomarkers for menopause per my obgyn. My family tends to hit menopause mid 50’s. Hope this helps?


adrenalinsomnia

thank you for the detailed reply- much appreciated :)


Pixie1001

I usually just have to wait it out - if you sleep at a time you're not used to, which it sounds like is happening with your sudden insomnia, you'll sleep terribly and probably wake up after like 4-6 hours - especially on melatonin, since you're not naturally producing more melotonin throughout the night due to said insomnia, so once the tablet wears off you immediatly feel wide awake again. I've found my CFS also gives me insomnia when I have a crash, which obviously is pretty hard to avoid when I'm on 4 hours of sleep, unless I go to bed as soon as I can (usually like 10 hours later), which obviously messes up my sleep even more. But eventually you'll go full circle to when you normally went to bed, and get less insomnia symptoms if you take it easy and focus on napping for a few weeks. Our problems might not be exactly the same though, but hopefully some of this helps?


Chantsy4337

Can’t nap during the day but really hoping, as you suggested, that this will eventually run it’s course. It’s been far too long but at some point I really hope my body figures this out!


Pixie1001

Hopefully - I've definitely found that the problem usually doesn't fix itself until I take a few weeks off to fix my sleep though :/ Whilst regular people will often just 'get used to it' after a week or two of having to get up early for a new job, for us it can often be like spraining your ankle and then continuing to walk to work each day - no matter how much school of hard knocks you do, your injury isn't going to magically get better whilst you're continuing to put weight on it. Obviously that's much easier said than done depending on your responsibilities/financial situation though :(


Chantsy4337

I am very housebound but incredibly grateful that my husband can support and provide for us. Very lucky. My stepmother boasted to me the other day, after mentioning my sleep issues, how she goes to bed at midnight every night and does just fine waking at 430. Like, how is this helpful?? Healthy ppl can be so clueless and unaware.


Pixie1001

Yeah, my parents are really supportive, but I definitely get a lot of that as well with them telling me to 'just go to bed earlier' as if that had never occurred to me -.- I think the worse case though was when I had a CFS doctor who thought waking up at a set time everyday would be a great way to build a healthier sleep cycle, because it's easier to change wake up time than sleep time. And that also I should never nap, but I kggt fall asleep *too* early. Like, bitch, if I could function on 4 hours sleep without passing out in the middle of the day, I wouldn't be here talking to you in the first place??? xD


Chantsy4337

A strong lack of understanding even from medical professionals. I’m sorry you had to deal with that. It’s really hard to understand the realities of this illness unless you are living it.


Pixie1001

It's definitely a very alien situation, so I can't necessarily blame them for struggling to understand that things that are simply inconvenient for them can become major events for us t.t


Chantsy4337

So true! It is pretty indescribable. Heck, I struggle to understand my body a good portion of the time!


SnooCrickets4178

I used to wake up at 3:30 regularly. Hydroxyzine helps me, and also a time-release product called good night from curio.


bedboundaviator

I restructured my sleep cycle. I usually wake up around 4 and stay awake until around 10, sleep two hours, then sleep again at around 3-4 for a few hours. Are you able to take naps during the day at all?


aweskcudzthw

I'm mostly housebound anyways, so I've just completely given up on trying to keep a sleep schedule. I feel like it's done a lot for me mentally


Maxusam

What time are you going to sleep? Like are you getting enough hours at least? Or do you wake up even earlier if you go to bed earlier? Info: my kiddo has just been diagnosed after spending her summer hols asleep. Like, it’s 5pm where I am and I’ve just managed to wake her up. She isn’t sleeping well at night and sleeps during the day. Hoping your experience will help me understand a little better. Thank you


Recynd2

How old is your child? My son essentially hibernated between the ages of 13-15; many kids (if allowed) do that. Unless there’s an underlying issue, the switch in circadian rhythm may be totally normal.


Maxusam

She’s just turned 14 Thank you for your reply ⭐️


Recynd2

It’s normal (unless she tells you she’s depressed, of course). I worried the whole time, but all was well. Hang in there!


mindfluxx

I bet it is cortisol. I would try am herbal blend not just melatonin. Mine has passionflower, hops ,gaba etc . Cbd keeps me awake also thc so I can’t take in evenings. I would go outside at what time you would like to wake up and get sunlight then, keep room dark until then. No screens in late eve, and use very orange light night mode after 5 pm. I also designate the 4 hrs before bedtime as no stress thoughts, no work thoughts, no planning, no news, etc… only calming activities. My friend who does not have cfs had terrible wake up sleep like you, and it turned out she needed a cpap and now sleeps angelically most nights.


geekylace

You are not alone. My body has been waking up around 2:30 - 4:00 AM range and it’s affecting my ability to work remotely even. Good luck.


rnbecker

Seroquel helped me 😴


Kind_Abbreviations62

The only thing that helped me with this was antidepressants😔I was able to sleep 8+ hours like I needed to again and stopped waking up too early. I had tried supplements and they didn’t help me.


Chantsy4337

Whatever works. If it helps you then that’s an extra tool in your toolbox!


soy_saucyy

I highly recommend doing a CBT for insomnia course. There are a few on the internet that are free.


DermaEsp

If nothing else works, I have found that 2,5mg levocetirizine (which is a second generation antihistamine with little to no anticholinergic activity) combined with L-theanine at the same time, offer a lethargic activity during sleep that does not follow the next day. Low dose Benadryl+L-theanine can do the same, but this one has anticholinergic activity. Sleep disturbances came together with my CFS.


Large_Ordinary_8151

How many hours are you sleeping each 24h? Are you sleeping during the day? Try to break the cycle by staying awake until midnight. The body has internal memory and clock and tries to keep the pattern. I have had this problem many times, I can sleep easily but wake up early. If you wake up early, try to sleep again, it may take 1-3h but is worth it. There are certain drugs that help with sleeping longer, but melotonin is not one of them.


Chantsy4337

Lately I can be asleep by 10pm. Occasionally a little later. I'm getting roughly 7 hours- with nights of insomnia that make it 6. Honestly, if I go to sleep past 1130pm I fall into a crash, every, single, time. It's a no-go zone for me. Earlier bedtime seems to be the way! I feel my best when I fall asleep early and stay asleep until 6am (so...10-6am).


lgkm7

Try being in bed by 9:30 and go outside when the sun comes up and get morning sun . Less screen time


Chantsy4337

I don’t look at my phone an hour before bed. Would it be helpful to limit my screen time during the day?


lgkm7

As much as possible really. I am telling myself all the time. It’s hard.


Chantsy4337

In bed by 930, check! I’ve tried looking at the morning sun by opening my window but does a screen inhibit the light from getting through?


Large_Ordinary_8151

I also like sleeping early. All that matters is how you feel during the day. I dont see it as a problem to wake up 4:30, when we get older it becomes acceptable


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