My son has been sleeping 14 to 16 hrs a day

[Hope_eternal]

My son has been sleeping 14 to 16 hours a day the past three days. I’m so scared and sad. He can’t seem to stay awake for very long. This is how he was when the fatigue set in a year and a half ago. He’s really taken a back step.,is there anything we can to do to help him? He wasn’t sleeping very well for a few days before this happened. He was doing random naps throughout the day. Now he’s sleeping an 8 hr stretch with several naps here and there. He’s missing meals., I wish there was a doctor out there that can help us. I’m terrified and don’t have anywhere to turn.

 

[Judee]

I'm sorry you and your son are going through that. I wish I knew what to advise. Since you mentioned missing meals, for that at least I would say find high calorie foods that are close to whole as possible that he can easily eat in between his sleep sessions.

Does he tolerate dairy at all? Whole foods has a sheep yogurt (Old Chatham) that is full fat, It's just sheep milk and cultures. It's absolutely the loveliest yogurt I have ever had. I sometimes use it when I need to eat in the morning but am too tired to chew very much. You could add a fruit puree or seedless jam to it if he doesn't like plain. Somethings like that might at least help you feel like he's getting some healthy nutrition.
Anyway, just an idea.

Saying a praying that he starts to improve soon. It's hard watching someone be ill and not knowing what to do. I understand the caregiver side of it too.

 

[dannybex]

My son has been sleeping 14 to 16 hours a day the past three days. I’m so scared and sad. He can’t seem to stay awake for very long. This is how he was when the fatigue set in a year and a half ago. He’s really taken a back step.,is there anything we can to do to help him? He wasn’t sleeping very well for a few days before this happened. He was doing random naps throughout the day. Now he’s sleeping an 8 hr stretch with several naps here and there. He’s missing meals., I wish there was a doctor out there that can help us. I’m terrified and don’t have anywhere to turn.

Okay, this will sound weird, but in general it's unusual for someone with ME/CFS to be able to sleep so long. In fact one of the definitions of the condition is 'unrefreshing sleep'. This of course can take many forms, but it often means one may be able to sleep 5-7 hours or so per night, but even if they can sleep longer, they still wake up feeling like they not only hadn't slept at all, but they'd been walking for miles all night long.

What's happened recently? Started or stopped any meds or supplements? Any significant stresses (besides the obvious)?

Eating more protein tends (in general) to keep one awake, while more carbs does the opposite.

 

[linusbert]

tried benfothiamine?
or some active b12/ methylfolate b complex?

usually those methylated vitamins (methylfolate, methylcobalamine) have for some sensitive the side effect of wired and not being able to sleep.
for example like this "Country Life, Coenzyme B-Complex Caps",

i'd try to get in some choline like from egg yolks which is required for methylation.

 

[Hope_eternal]

I'm sorry you and your son are going through that. I wish I knew what to advise. Since you mentioned missing meals, for that at least I would say find high calorie foods that are close to whole as possible that he can easily eat in between his sleep sessions.

Does he tolerate dairy at all? Whole foods has a sheep yogurt (Old Chatham) that is full fat, It's just sheep milk and cultures. It's absolutely the loveliest yogurt I have ever had. I sometimes use it when I need to eat in the morning but am too tired to chew very much. You could add a fruit puree or seedless jam to it if he doesn't like plain. Somethings like that might at least help you feel like he's getting some healthy nutrition.
Anyway, just an idea.

Saying a praying that he starts to improve soon. It's hard watching someone be ill and not knowing what to do. I understand the caregiver side of it too.

Thank you for your kind words and for the meal suggestions. During the waking hours I do offer him food but he says he’s not hungry. He did end up eating around midnight last night., thankfully. I will try and find the yogurt you suggested. It is so very hard seeing him feeling so terribly and wanting so badly to make him better but not being able to. Thank you for your note !

 

[Hope_eternal]

This of course can take many forms, but it often means one may be able to sleep 5-7 hours or so per night, but even if they can sleep longer, they still wake up feeling like they not only hadn't slept at all, but they'd been walking for miles all night long.

Yes that’s what he always say, no matter how long he sleeps he never feels rested and if he goes over his energy level which is basically lay in bed all day and a trip or two to the bathroom he crashes with PEM. His sleep varies, from week to week but he never feels refreshed. I call his sleep “sleep cycling” because it’s all over the place. One week he is up all day and falls asleep at 2 or 3 in the morning , one week he naps all day, one week he sleeps from 4 pm to 10 pm. There just isn’t any consistency.

I ask him if anything has changed to cause the setback. He says no.,He’s been declining for the last 6 weeks. Ever since we took him to a doctors appointment that required an overnight stay because it was out of town, he’s been crashed since then,

 

[Hope_eternal]

tried benfothiamine?
or some active b12/ methylfolate b complex?

usually those methylated vitamins (methylfolate, methylcobalamine) have for some sensitive the side effect of wired and not being able to sleep.
for example like this "Country Life, Coenzyme B-Complex Caps",

i'd try to get in some choline like from egg yolks which is required for methylation.

He has tried all the B vit with no positive results. He does take a b12 methylfolate vit called homocystex plus but was taken off the other Bs. Thank you so much for your note and suggestions.

 

[serafim]

contrary to what some people are saying it’s not unusual for ppl with CFS to sleep for 12+ hrs a day. the majority has trouble sleeping but there’s a subset of people with hypersomnia. some (it seems like your son is one of these people) go through cycles where they catch up on lost sleep after a bout of insomnia.

id say just let him sleep for now. some of us feel better when we sleep longer. if the current sleep schedule is causing him distress, talk to him about normalizing it by keeping himself up until bedtime, use melatonin in the evenings if needed

 

[serafim]

His sleep varies, from week to week but he never feels refreshed. I call his sleep “sleep cycling” because it’s all over the place. One week he is up all day and falls asleep at 2 or 3 in the morning , one week he naps all day, one week he sleeps from 4 pm to 10 pm. There just isn’t any consistency.

he could have delayed sleep phase disorder. if that’s the case melatonin could help

 

[Hope_eternal]

contrary to what some people are saying it’s not unusual for ppl with CFS to sleep for 12+ hrs a day. the majority has trouble sleeping but there’s a subset of people with hypersomnia. some (it seems like your son is one of these people) go through cycles where they catch up on lost sleep after a bout of insomnia.

id say just let him sleep for now. some of us feel better when we sleep longer. if the current sleep schedule is causing him distress, talk to him about normalizing it by keeping himself up until bedtime, use melatonin in the evenings if needed

I think our next step is to have someone come out to
our home to do a sleep study. He did a study that hooked a sensor to his thumb a couple weeks ago that showed he had a very mild form of sleep apnea. His doctor said it was so mild it wasn’t worth treating right now. His current functional doctor said she would not recommend melatonin for him right now. I can’t remember exactly why but it was something to do with her thinking people with chronic fatigue didn’t do well with it. I’ll ask again though. Thanks for your note!

 

[serafim]

I think our next step is to have someone come out to
our home to do a sleep study. He did a study that hooked a sensor to his thumb a couple weeks ago that showed he had a very mild form of sleep apnea. His doctor said it was so mild it wasn’t worth treating right now. His current functional doctor said she would recommend melatonin for him right now. I can’t remember exactly why but it was something to do with her thinking people with chronic fatigue didn’t do well with it. I’ll ask again though. Thanks for your note!

i’ve never heard of people w CFS having negative reactions to melatonin, and i’ve been participating in a lot of insomnia related discussions, having severe insomnia myself. on the contrary, some people take melatonin as a way to combat neuroinflammation or something like that. in any case, it’s a very benign medication. if i understand correctly that your FD has said it’s not good for people with CFS i assume it has something to do with the risk of grogginess during the day. In your son’s case, where his productivity is the least of your concerns, i don’t think there’s any harm in trying melatonin. Some people i know who have delayed sleep phases swear by it.

 

[Violeta]

Have you had your son's catecholamine levels checked?

I don't know if it makes sense to go to melatonin at this stage of the game.

Maybe find a doctor that will have his dopamine/serotonin levels checked.

With respect to dopamine:

Cerebrospinal fluid (CSF) analyses in idiopathic hypersomnia have shown normal cell counts, cytology, and protein content. Montplaisir and coworkers found a decrease in dopamine and indoleacetic acid in both patients with idiopathic hypersomnia and with narcolepsy.


And serotonin:
Serotonin has been linked to fatigue because of its well known effects on sleep, lethargy and drowsiness and loss of motivation.

I would also look into the HPA axis. Probably lots of info about it here.

 

[linusbert]

He has tried all the B vit with no positive results. He does take a b12 methylfolate vit called homocystex plus but was taken off the other Bs. Thank you so much for your note and suggestions.

i checked it out, the ingredients itself look solid. but its only B2, B6, Folate, B12 and Glycine(TMG). i would not recommend such a high dose supplement without the other vitamins and minerals.
B12 and Biotin also work tightly together. and the other vitamins follow shortly. thiamin is very much involved too, also in neurological functioning. vagus nerve etc.
also b2, b6 and biotin compete for transportation. so not having biotin here, adds further to chance of biotin deficiency.

i'd take such a supplement only if i had a solid base of all b vitamins and minerals and trace elements to not get into imbalance.
i suspect minerals being off balance now, especially potassium and phosphorus but also others.

maybe in your case it makes sense to stop the high dose supplement for a while. try to get some potassium in like with coconut water and phosphorus like with kefir or other rich phosphor products.
then get back with a low dose 100% rda like b complex but also minerals. and then add the high dose seeking health product you have.
i also would think that thiamine as in allithiamine or benfothiamine makes sense in addition (but b1 itself drains on potassium and phosphorus)
please talk about this with your practitioner or who recommended the seeking health.

just from my experience, when i started high dose vitamin D i also got sleepy and tired. what many do not know is that vitamin D also drains potassium. you need to have plenty of it. (and of course magnesium too, but nobody is talking about potassium).
also phosphor. too less in itself can make sleepy or tired, because its involved in building ATP the energy currency of our body.

vitamins and isolated vitamins and minerals can become really dangerous in terms of throwing a system off balance. going low and slow and working up makes sense in sensitive bodys.

again, i can recommend to focus on potassium, phosphor.. and you might try D-ribose, its like phosphor part of ATP.

 

[L'engle]

Melatonin would likely make him even sleepier. Maybe he just really needs sleep for a few days to finally get over the crash from the overnight appointment. Is he bothered by how much he is sleeping, or is he just very out of it?

 

[lenora]

Hi @Hope_eternal. This is for when your son is slightly more alert and it may be a "hook" that will keep him awake and interested in life again.

The Time magazine of Feb. 26/04 has a long write up (beginning on p. 46) about a young man who also has colitis and had to give up sports b/c of it (your son, as I recall). His name is Jimmy Donaldson, he seems fairly normal and is in his 20's. Your son may have even heard of him before he got ill.

He's an influencer on many social media apps. OK, it may not be my type of thing, but younger people seem to be lapping it up. The numbers of viewers are astonishing....absolutely astonishing.

I thought it may be a gentle way for him to return to the world of the living. Jimmy is know as Mr. Beast, and perhaps your son would know him by that name. The viewership is beyond one's wildest dreams....and your son may like that he had one of his illnesses,

So read about him (if you spare time, of course 😊 ) and then find him somewhere...even youtube. It would be good to see him gently return to the world of the living. Good luck. Yours, Lenora

 

[lenora]

@Judee....That yogurt sounds heavenly. I eat a lot of Greek yogurt, but all yogurt is helpful. Yours, Lenora

 

[Hope_eternal]

Have you had your son's catecholamine levels checked?

I don't know if it makes sense to go to melatonin at this stage of the game.

Maybe find a doctor that will have his dopamine/serotonin levels checked.

With respect to dopamine:

Cerebrospinal fluid (CSF) analyses in idiopathic hypersomnia have shown normal cell counts, cytology, and protein content. Montplaisir and coworkers found a decrease in dopamine and indoleacetic acid in both patients with idiopathic hypersomnia and with narcolepsy.


And serotonin:
Serotonin has been linked to fatigue because of its well known effects on sleep, lethargy and drowsiness and loss of motivation.

I would also look into the HPA axis. Probably lots of info about it here.

Thank you. We are awaiting Dutch test results that are testing adrenal function and certain hormones. Hopefully they will be in next week some time. He is on Welbutrin which acts in dopamine and Prozac which works on serotonin right now. He’s been on That for about a year. His functional doctor has him on Gaia daytime HPA support. He’s been on that for a few months. When this first started a year and half ago he had high cortisol throughout the day. His cortisol was tested at the hospital this past summer and they said it was normal. We have been trying so many things and have hardly made a dent in the way he feels. The endless fatigue he endures is the main problem. He can’t even get out of the bed to do basic needs without crashing. I appreciate your note and helpful information!

 

[Hope_eternal]

i checked it out, the ingredients itself look solid. but its only B2, B6, Folate, B12 and Glycine(TMG). i would not recommend such a high dose supplement without the other vitamins and minerals.
B12 and Biotin also work tightly together. and the other vitamins follow shortly. thiamin is very much involved too, also in neurological functioning. vagus nerve etc.
also b2, b6 and biotin compete for transportation. so not having biotin here, adds further to chance of biotin deficiency.

i'd take such a supplement only if i had a solid base of all b vitamins and minerals and trace elements to not get into imbalance.
i suspect minerals being off balance now, especially potassium and phosphorus but also others.

maybe in your case it makes sense to stop the high dose supplement for a while. try to get some potassium in like with coconut water and phosphorus like with kefir or other rich phosphor products.
then get back with a low dose 100% rda like b complex but also minerals. and then add the high dose seeking health product you have.
i also would think that thiamine as in allithiamine or benfothiamine makes sense in addition (but b1 itself drains on potassium and phosphorus)
please talk about this with your practitioner or who recommended the seeking health.

just from my experience, when i started high dose vitamin D i also got sleepy and tired. what many do not know is that vitamin D also drains potassium. you need to have plenty of it. (and of course magnesium too, but nobody is talking about potassium).
also phosphor. too less in itself can make sleepy or tired, because its involved in building ATP the energy currency of our body.

vitamins and isolated vitamins and minerals can become really dangerous in terms of throwing a system off balance. going low and slow and working up makes sense in sensitive bodys.

again, i can recommend to focus on potassium, phosphor.. and you might try D-ribose, its like phosphor part of ATP.

Thank you so much for all this very helpful information! I will reach out to his functional doctor Monday with the vitamins you brought up. He does eat bananas just about every day but it might not be enough potassium to support the high dose homocystex plus supplement. Thank you for bringing this up. I will certainly check this all out.

 

[Hope_eternal]

The Time magazine of Feb. 26/04 has a long write up (beginning on p. 46) about a young man who also has colitis and had to give up sports b/c of it (your son, as I recall). His name is Jimmy Donaldson, he seems fairly normal and is in his 20's. Your son may have even heard of him before he got ill.

Thank you for this suggestion. I will look into him. He loves watching YouTubers. I’ll have to se if he’s heard of him.

 

[Hope_eternal]

Melatonin would likely make him even sleepier. Maybe he just really needs sleep for a few days to finally get over the crash from the overnight appointment. Is he bothered by how much he is sleeping, or is he just very out of it?

He says he just can’t stay awake and is exhausted. The sleep doesn’t help him feel better. He just keeps having to sleep due to the exhaustion. He hasn’t gotten back to his baseline in 6 weeks. He used to be able to go downstairs 1 time a day and take a shower every 2 weeks but now it’s only a trip to bathroom,