So yesterday I woke up at 3 pm (which veryyyyy rarely happens last 1,5 year since I managed to make my non-24 back to Delayed, and then even better to 0am-2am sleep time, for last 2,5 months). Thing is, my brain and energy was best yesterday when I woke up at 3 pm. I was so sad. Because this might mean my body needs crazy rhythms. I have traumas from non-24 lifestyle. Do people who have mentioned they have delayed or even non-24, see any changes in cognitive functions? on Wikipedia they mention as a consequence of forcing normal rhythm, if you have non-24, many cognitive and psychiatric symptoms. Most of which I have. Like apraxia, slowed processing etc. But they dont go away with sleeping however I want. Last 1.5 yr my sleep normalized first with antibiotics (treating lyme), then I did melatonin, then I stopped melatonin to see how my sleep is on its own, and I did high dose vitamin D, at times on vit D, for short, like 2 weeks, it even normalized. But some my cognitive functions have never been worse (while others improved on vit D, but overall i'd say more bad than good with cognitive funcitons, this is why I stopped it). After IV ceftriaxone this July/August, my sleep became normal first time since I was in puberty. but now last 2 weeks slide back to waking up later
@Pibee that's absolutely fascinating about your sleep normalising while on antibiotics. I've read about that happening to someone on the "(DSPS) Delayed-Sleep-Phase-Syndrome" Facebook group I'm a member of for my daughter, who's afflicted. Most people on that group seem to think theirs is genetic, as they've been that way since birth. Apparently there is a genetic marker. But you had DSPS since birth, yet improved on antibiotics. It's amazing you got back to normal on the IV antibiotics. Can you repeat the infusions at regular intervals, or is it too dangerous, regarding bacterial resistance? Forcing normal sleep routine has definite cognitive, physical, and psychological consequences. The Facebook group I mentioned is a closed group, but join and you'll read of many similar experiences. Everyone is kind and supportive. There's also a sister group for non 24. We've recently found many people have Autoimmune disorders, with Fibromyalgia being a huge problem. Anxiety and depression is rife. People able to live to their body's natural rhythms are far happier, but many report that damage has already been done. Research is posted on the group that shows how much damage is done to the brain when even a short amount of sleep is missed, so if you've had years of inadequate sleep, and not sleeping to a schedule natural to you, it will take time getting true restorative sleep to have a hope of regaining cognitive function. I don't even know if it's possible. I bloody hope so, because my 18 year old is in this boat too.
I have had Lyme and bartonella since very early, so it goes with that. I cant say if it's from birth but as a toddler I did already have tendency to fall asleep later than usual. It become a real problem since puberty, around 12-13, with functioning, up until then I dont remember sleepless nights. Wait, I lie, i did tend to fall asleep up to 2 hours after my family even when kid, i'd roam around the house, bored. so I had many other neuropsychiatric symptoms as kid - I think this was PANS - autoimmune neuropsychiatric syndrome from Lyme/bart/who knows. I am not sure if IV ceftriaxone killed infection deep in brain, and this is what helped, or it was glutamate effect. I am thinking about trying it again for 1-2 days, more than this just destorys my gut. because while on IV ceft first days my CFS energy level also got much better and cognitive dysfunction. But impossible to know if it was all Lyme. Before my Lyme test was positive, after all zeros. But why I am bad now again, as soon as I stopped it? Makes no sense.
Consistent sleep hygiene and routine is something I really want to have but I have never been able to keep it up or control it; it can just go mental sometimes (like it is now!). I think this is because the rules are always changing with a fluctuating health condition. It's also inconvenient that it's a struggle to keep track of what you've tried and haven't tried or what you can do better to improve it etc. (for the same reasons its a problem in the first place!). We'll have to keep trying to figure it out! At least we're not alone.
I did it for years. Here is what happened. I became massively sleep deprived. Then my OI went nuts and I started passing out and falling down all over the place. Sleep hygiene might be good for mild insomnia, but its not reliable for severe circadian issues.
I just got prescribed Sublinox to help me with sleep issues. I won’t be using it everyday. My therapist has been using it for more than 10 years and said it works well and she never got am addiction since she doesn’t use it continuously. Anybody tried it ?
@Pibee I keep reading that Lyme tests can be unreliable, so I'd guess your Lyme isn't all killed off, and you should still be on antibiotics, going by your symptoms! Incredibly aggravating to back slide after feeling so good. Have you read up about that issue? You sound extremely well informed, so I bet you have.
@Squeezy , yes I did. But i am not so convinced about Lyme being still active . My test was consistently positive until after IV ceftriaxone. And also disulfiram - which is not an antibiotic but a drug for alcoholics - in vitro kills all Lyme forms and none of the gut flora, so if anything, I'll try that. As I said, I am not convinced IV ceft killed my lyme or maybe had some other action. Now it seems my worsening last 1 year is because of viruses, it was so obvious, but I ignored it and tested negative on LTT , which gave me an excuse to rule them out. But I started to get colds, flus, all the time, I never had before, and even sore throat sometimes out of nowhere, which I also never had... is well known antibiotics can make viruses worse. :/
https://alzheimersnewstoday.com/201...in-restore-brain-function-alzheimers-disease/ I am thinking perhaps something like this has happened to me on IV rocephin, and not killing of infection. But it also improved my ME/CFS and flu-ish feeling much over night so I dont know. I'll now repeat 2-3 days of IV rocephin to see if it gives the same effect again. I'd assume if it's the glutamate effect it will repeat. If it is infection it is less predictable, because Lyme is hard to knock down with just 1 antibiotic and 3 months ago I got lucky. Now I wake up suddenly at 2pm, as much as I hate it seems my deepest most restorative sleep is that way, even when 8am wake time was spontaneous it wasn't as restorative for my brain.
Sorry to take so long to reply, i had this tab open and it got buried by a million other tabs. I started at 500mg, i was able to fall asleep easier and i started dreaming again, it slowed the non 24 from 8 hours to maybe 6 hours and improved cognition a bit Raised to 1000mg, pulled body clock down to 4-6 hours a month and started undoing my vegetableness but body clock started creeping back to 6-8 hours. Disjointed dreams, poor dream memory Raised again to 1500mg/day seemed to stop my body clock for a couple weeks but went back to 8 hours a month, maybe moving towards 10 Cognition has improved a bit further, no longer a vegetable, but cant think as well as a year or two ago, still running on fumes. Its only now i can concentrate enough to make this reply. So it seems to poke my non 24 circadian rhythm disorder but not for very long. Also my non 24 has gotten worse about in step with the ME/CFS progressing Can you elaborate? This is mighty interesting to me, i wonder how it works
Non 24 is about the tendency to keep a sleep cycle a bit longer than 24 hours. However I do find it can be like 16 hours or 32 hours, just tends to be 25 hours. What has been happening to me the last few years is a sleep cycle of four to six hours. I am awake for a few hours, then asleep for a bit. A bit can vary though ... at my worst it was a couple of minutes, and I was only sleeping for about 42 minutes a day, and it was getting worse. This was largely induced by a blood pressure med (calcium channel blocker) but even without it the pattern holds. Typically I only sleep for about two hours out of every six. Tonight I was lucky to sleep six hours, that is no longer normal for me.
Can you elaborate? This is mighty interesting to me, i wonder how it works Believe me that I know what non 24 is, my body clock moves forward about 8-10 hours a month What your describing is more like a free running circadian rhythm, some even thought this was a great idea (Buckminster Fuller)
@Alvin , I wish to know too, lol, .. Lyme or glutamate -if u were speaking about ceftriaxone part. if you speak about 3pm wake time.. last days was 10.30 am and 11 am and i had my best days in a while.. but my body loves that delayed sleep 10 am is still compatible w some life..will be happy with that.
yes, this i hope i don't get this bad, though i would like to know what the mechanism is, neurologist insists its genetic because all non 24 is genetic. He knows nothing of ME/CFS so i'm not sure how much stock to put in this belief.
Ummm, non 24 occurs in blind people and its not genetic. So the neurologist is wrong. Sleep is regulated by two sleep centers, and requires active hormone synthesis (PGD2), and lots of other mechanisms. There is also a second sleep center in the brain stem but we only just discovered it and know very little. Any assumptions about sleep and genetics appear to be dubious at best. Non 24 also occurs in long term ME patients. I rarely hear of it in the first three years, and I hear about it a fair bit in patients sick for longer than a decade.
The non 24 in blind people is due to lack of rhythm setting from melanopsin in the eyes. These people typically respond to melatonin supplementation and a subset still respond to bright full spectrum or blue light since its actions are a separate system from vision. That said the neurologist i see specializes in circadian rhythm disorders and does research into non 24 so i believe him but i am his first ME/CFS patient and he does not know how this condition affects sleep since its not his area (i wonder if there are any sleep doctors anywhere who specialize in ME/CFS related sleep disturbances). That said when i asked about non 24 at the other place it seemed there were only a couple whereas DSPS and other sleep abnormalities are nearly universal in ME/CFS so i am surprised that several just in this thread have non 24 My feeling is my non 24 is not genetic and i sincerely hope it is ME/CFS related so someday if we have a treatment it will also go away
Light related circadian setting was only one out of maybe fifteen different factors that I found more than a decade ago in the scientific literature. This is just about the SCN as well, we know nothing about the other sleep center. I forget the details now, but most of these factors are known to be disturbed in ME. Even a high level of oxidative stress in the brain can cause issues, including failure to synthesize sufficient PGD2 for sleep. I suspect this area of medicine may be dominated by unproven theory. Another issue is that for ME patients we acquire this much later in life than most genetic disorders, though by no means all.
