My son has been sleeping 14 to 16 hrs a day

[Zebra]

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,

Hi, @Hope_eternal

I can hear, and understand, the concern in your posts about your son's sleeping habits and declining baseline.

Seemingly out of nowhere (perhaps a delayed reaction to attending a far away medical appointment), something similar happened to me.

I was NOT able to stay alert or awake during the day. I would get up for breakfast, I could maybe keep my eyes open for an hour afterward, and then I would sleep through the afternoon and get up for dinner.

So, I was averaging only 2 meals a day in an already underweight body, so I kept my meals clean, nutrient rich, and high in good fats.

The exhaustion and drowsiness was so overwhelming I actually got a second carbon monoxide detector, but all was well in my environment. The issue was my disease and/or an exacerbation of my disease from unknown cause.

My primary care physician speculated that perhaps I caught a virus during one of my rare excursions outside of the house for a medical appointment. I'm skeptical of that, given that folks in my area tend to mask up during respiratory illness season, as do I, but I suppose it's possible.

Eventually, I cycled out of the overwhelming sleepiness and was able to stay awake during the day, but I am sorry to tell you I have not yet returned to my previous baseline.

I just wanted to share my experience in case it is comforting to you.

There are many ups and downs in this disease, and when things trend downward, I spend way too much time trying to figure out what I did, what went wrong, and am I ever going to cycle out of it. My goal in 2024 is to approach this differently as that mindset is too taxing.

Hugs!

 

[dannybex]

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!

If he has sleep apnea, treating it could be very beneficial, mild or not. If that doctor was mine, I'd ask why wait until it gets severe? Weird...

I'm one that doesn't do well on supplementary melatonin at all. It constricts some blood vessels and dilates others, but for me anyway, anything that contricts causes worsening symptoms. Like most antihistamines...almost instant "restless legs". argh...

 

[Judee]

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,

That can do it. I would say as others are saying to try to get nutrient dense foods into him when he's awake and let him sleep as much as his body wants to otherwise. Hopefully he's young enough that things can start to repair that way.
I like the idea of an at home sleep study though...like Danny said, sooner rather than later.
I'm still a little concerned about his Crohn's med suppressing his immune system though and as Zebra said maybe he caught another something on that trip that his system is having a hard time overcoming even with all the rest.

He has tried all the B vit with no positive results.

IIRC, things like parsley and brown rice are high in B vitamins. Short grain brown rice is more palatable but not sure how he would do on that with the digestive issues. I have IBS and fiber usually stirs that up more but I can handle the short grain brown rice once in a while without issues. I cook it in broth left over from antibiotic-free chicken I have made and include the chicken fat. You could put the parsley in the cooking broth. Anyway, just another food thought.

i’ve never heard of people w CFS having negative reactions to melatonin,

I get headaches and feel like a brain dead zombie the next day if I use it. I've never had a binge hangover but this is what I'd imagine one would feel like if I did.

 

[L'engle]

I get headaches and feel like a brain dead zombie the next day if I use it.

Same.

 

[L'engle]

Short grain brown rice is more palatable

Yes, short grain brown rice is much easier to eat than long grain. Cal-rose rice or others like that are good. Long grain brown rice can be hard to stomach.

 

[CCC]

I am so sorry you and your son are going through this. We have been there and know what it's like.

I am writing this to give you some hope that it could get better, even if it takes a while.

My son was 15 when he finally crashed for real, but looking back, the signs of a slowdown had been there for a few years. At his worst, he was 50kg and almost 6 ft tall. He had no appetite and slept and slept. He could shower etc, but had to plan it out (and still does, but less so).

He now eats 3 good meals a day, sometimes 4. His sleep is still all over the place, but he can now focus on things when he is awake. The anxiety and irritability has gone. He has just started open university this year, still from home, but it is incredible.

At the stage you are at now, I found the main things to get some energy in were:
1. Bone broth - this was a main source of nutrition at our worst. I just boiled up bones from each roast and used it as a base for soup - usually lentil soup for ease of digestion
2. Hospital grade sustagen - this was fanastic for between meals (especially after school while he was still attending). We found it was great straight after school and also before going to bed to give a better sleep. We had to stop eventually due to presence of folic acid and milk, but it was great while it lasted.
3. Avoiding all wheat (not gluten, just the wheat for him) and drinking only non-homogenised full-cream milk.

It would be worth seeing a dietician and asking for easy-to-digest high-energy ideas. The hospital dieticians have a whole range of liquid food thingies they can prescribe.

If you haven't already, get tested for gut parasites, lyme and coinfections, full blood panel, OATS test (how we found B2 deficiency)

 

[Hope_eternal]

I am so sorry you and your son are going through this. We have been there and know what it's like.

I am writing this to give you some hope that it could get better, even if it takes a while.

My son was 15 when he finally crashed for real, but looking back, the signs of a slowdown had been there for a few years. At his worst, he was 50kg and almost 6 ft tall. He had no appetite and slept and slept. He could shower etc, but had to plan it out (and still does, but less so).

He now eats 3 good meals a day, sometimes 4. His sleep is still all over the place, but he can now focus on things when he is awake. The anxiety and irritability has gone. He has just started open university this year, still from home, but it is incredible.

At the stage you are at now, I found the main things to get some energy in were:
1. Bone broth - this was a main source of nutrition at our worst. I just boiled up bones from each roast and used it as a base for soup - usually lentil soup for ease of digestion
2. Hospital grade sustagen - this was fanastic for between meals (especially after school while he was still attending). We found it was great straight after school and also before going to bed to give a better sleep. We had to stop eventually due to presence of folic acid and milk, but it was great while it lasted.
3. Avoiding all wheat (not gluten, just the wheat for him) and drinking only non-homogenised full-cream milk.

It would be worth seeing a dietician and asking for easy-to-digest high-energy ideas. The hospital dieticians have a whole range of liquid food thingies they can prescribe.

If you haven't already, get tested for gut parasites, lyme and coinfections, full blood panel, OATS test (how we found B2 deficiency)

Thank you so much for sharing! This brings me hope I’m so sorry you and your son having been going through this. I will try the bone broth. I used to make it for him when he couldn’t eat due to a fistula in his intestines from Crohns. He didn’t like it very much but that was also 6 years ago so maybe he can tolerate it taste wise now. We are awaiting a lymes test results but he did come back negative for parasites. I think we had an oats test a year ago and nothing significant showed up. I’ll see if his doctor thinks it’s worth doing again. I appreciate so much your suggestions. I pray your son continues to improve and gain strength.

 

[Hope_eternal]

I'm still a little concerned about his Crohn's med suppressing his immune system though and as Zebra said maybe he caught another something on that trip that his system is having a hard time overcoming even with all the rest.

I’m very concerned about his Crohns med too. All the meds they would put him on would do that so it seems we don’t have any choice unless he will agree to a very strict diet which he doesn’t seem all too thrilled about. He has already given up so much when it comes to the foods he likes. I continue to search for other options but Crohns is a tough disease.

I’m going to see if we can do the sleep study at home. It’s definitely worth looking into. Thank you!

 

[Hope_eternal]

My primary care physician speculated that perhaps I caught a virus during one of my rare excursions outside of the house for a medical appointment. I'm skeptical of that, given that folks in my area tend to mask up during respiratory illness season, as do I, but I suppose it's possible.

Eventually, I cycled out of the overwhelming sleepiness and was able to stay awake during the day, but I am sorry to tell you I have not yet returned to my previous baseline.

I just wanted to share my experience in case it is comforting to you.

Thank you so much for sharing your experience. It does comfort me to know others have pulled through difficult times. I’m sorry you are still struggling and not at baseline yet., this illness is so full of twists and turns. I hope you find your way back to baseline and beyond very soon.

 

[almost]

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.

Good morning @Hope_eternal. I am sorry about your son's condition. The caregiver's position, especially mother, is not an easy one.

Feeling exhausted upon waking is a classic sign of sleep apnea, but CFS adds a wrinkle as unrefreshing sleep is a symptom here too. While a sleep study will help, you can actually learn a lot right now, if you are able to watch him sleep for a little bit (I understand he may not appreciate that). Watch his breathing. While he is still, it should be very regular, 8-16 bpm. If it varies while still, there is probably some mild hypopnea going on. If there are sudden breaths, even if shallow, that would indicate an apnea, the more sharp and sudden the deeper the apnea. In truth, part of what happens at a sleep lab is exactly this. Yes, you are hooked to machines and all that but you are also on camera, and visuals are used when there is questions on an event. Also, watch his position. Does he tuck his chin? That would cause positional apnea, something a CPAP will not be able to treat, but can be dealt with.

A reason to do the above, besides being free and available now, is that it can catch one item an at home test will miss -- central sleep apnea. This is a non-obstuctive, totally brain induced event. The brain just decides to stop respiration. I have it. It was a bear until it was treated. It would be something to keep in mind since your son is young and I trust not overweight. Most sleep apnea hits the older folks because we gain weight and get out of shape. Yes, those ENT muscles need work too. This is a concern for bedbound folks as the normal conditioning activities such as talking, cheering, laughing, etc are highly diminished.

You don't have to observe an entire night. The best time would probably be minutes 30-60 after falling asleep, and occasionally at random after that.

P.S. I offer this in addition to the at-home test, not to replace it.

 

[Hope_eternal]

While a sleep study will help, you can actually learn a lot right now, if you are able to watch him sleep for a little bit (I understand he may not appreciate that). Watch his breathing. While he is still, it should be very regular, 8-16 bpm. If it varies while still, there is probably some mild hypopnea going on. If there are sudden breaths, even if shallow, that would indicate an apnea, the more sharp and sudden the deeper the apnea. In truth, part of what happens at a sleep lab is exactly this

Thank you so much for this information. I will watch him to see if I can get a better understanding of what is going on. I appreciate you sharing with me how to assess things. I’ve watched him some and noticed a slight snore but never counted his breaths. I also didn’t notice any stops in his breath. It could be so slight it’s hard to detect visually.

 

[L'engle]

central sleep apnea. This is a non-obstuctive, totally brain induced event. The brain just decides to stop respiration. I have it. It was a bear until it was treated.

How did you treat it? I think my mum has this.

 

[almost]

How did you treat it? I think my mum has this.

There is only one way -- a BIPAP machine with ASV. I will say it was a night and day difference.

 

[Rufous McKinney]

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.

this may just be too strong a dose....a single drop of very pure B-12 I cannot tolerate it.

That yogurt sounds heavenly.

Sheep milk is highly recommended by my Chinese herbalist for a number of issue we commonly face. It's grounding, reducing wind. It helps rebalance the system energetically. I was using the sheep cheeses, during a special diet in which I consumed a fair amount of that. The yogurt sounds wonderful.

He says he just can’t stay awake and is exhausted. The sleep doesn’t help him feel better.

Our sleep is often unrefreshing, but that may not mean you're not still experiencing actually being incredibly fatigued and exhausted and unable to stay awake. Both can be true, which is why it feels lousy.

 

[CCC]

Thank you so much for sharing! This brings me hope I’m so sorry you and your son having been going through this. I will try the bone broth. I used to make it for him when he couldn’t eat due to a fistula in his intestines from Crohns. He didn’t like it very much but that was also 6 years ago so maybe he can tolerate it taste wise now. We are awaiting a lymes test results but he did come back negative for parasites. I think we had an oats test a year ago and nothing significant showed up. I’ll see if his doctor thinks it’s worth doing again. I appreciate so much your suggestions. I pray your son continues to improve and gain strength.

With bone broth, I found that there are a couple of tricks to make it more palatable (especially for a son who wouldn't/couldn't stomach fats at the time).

You have probably tried all of this, but we found things were better with:

• different bones - chicken and lamb are easier to digest than beef; chicken is less fatty than both
• star anise (just one star) in the broth during the entire process - throw it out with the bones when you are finished - I picked this up from a local restaurant that makes pho
• letting it cool and skimming off the fat (that said, I am still on a mission to increase fats, so I try to avoid that)
• making it into soup - to cover up that brothy flavour
• adding ginger, onion and salt to all the resulting soups (we also often add a small amount of chilli and then whatever other spices match the bones)
• adding whatever veggies we have on hand - potato, corn, sweet potato, carrots, pumpkin, zucchini
• adding a legume for extra energy and protein (red lentils are fast and easy to digest, cannelini beans are easy to digest)
• using rice or rice noodles for the carb - always add a carbohydrate

I also usually add some greens - bok choy is great as it is so easy to digest. It microwaves in a minute, so you can stir that it with the noodles at the end.

I noticed in your comments you are on B12. Meat can be hard to digest with B12 deficiency, so this is a sneaky way of getting the goodness of meat into the diet until the B12 is sufficient.

With Chrons, it would be worth testing for a gene called HLA-B27. It's not the only cause, but it can be a factor for some people and it can be mitigated through diet.

 

[Rufous McKinney]

will try the bone broth

I made my own lamb or beef based bone broths for some period of time, on a Tibetan wind-dispersing diet.

It was challenging getting my hands on good bones. They were very popular.

so in this wind-reducing diet: it helped my digestion and joints considerably when I ate this way.

roast the bone, then cook it up, and they would be using a pound of added lamb meat. Add some molasses and a shot of red wine. Nutmeg. Some Salt.. Drink warm. Tastes quite good.

Avoid bitter Greens. I ate many many roasted root vegetatbles (like roasting potatoes carrots and fennel root)

Grounding sheep cheese can be introduced.

 

[Hope_eternal]

this may just be too strong a dose....a single drop of very pure B-12 I cannot tolerate it.

Thank you. I will check with his doctor who prescribed it. He was pretty low in B12 when this started over a year ago. He’s now at a good level, Maybe we can reduce it. Adding it in didn’t seem to cause any negative effects.

Thank you for the broth tips. I know it is very healing for the gut so it would be a good thing to add in.

 

[Hope_eternal]

You have probably tried all of this, but we found things were better with:

• different bones - chicken and lamb are easier to digest than beef; chicken is less fatty than both
• star anise (just one star) in the broth during the entire process - throw it out with the bones when you are finished - I picked this up from a local restaurant that makes pho
• letting it cool and skimming off the fat (that said, I am still on a mission to increase fats, so I try to avoid that)
• making it into soup - to cover up that brothy flavour
• adding ginger, onion and salt to all the resulting soups (we also often add a small amount of chilli and then whatever other spices match the bones)
• adding whatever veggies we have on hand - potato, corn, sweet potato, carrots, pumpkin, zucchini
• adding a legume for extra energy and protein (red lentils are fast and easy to digest, cannelini beans are easy to digest)
• using rice or rice noodles for the carb - always add a carbohydrate

Thank you for these suggestions. I haven’t tried any of them because at the time he could not eat food so I just used the broth and some sea salt. He can eat now so maybe he might like it better with some of the ingredients you suggested.

With Chrons, it would be worth testing for a gene called HLA-B27. It's not the only cause, but it can be a factor for some people and it can be mitigated through diet.

This is very interesting. He did have some gene testing. I’m going to see if that was something that was looked into. If not I will ask them to test him. I’ve also heard lymes can trigger Crohns. We are awaiting lymes results. I’m curious to see if his is related to a tick bite in 2017. He developed Crohns symptoms shortly thereafter and was sick in the hospital from it in Dec 2018..

 

[CCC]

Thank you for these suggestions. I haven’t tried any of them because at the time he could eat good so I just used the broth and some sea salt. He can eat now so maybe he might like it better with some of the ingredients you suggested.

When you get to it, really do try including the star anise when making the broth. It really made a difference to the taste. Add salt, ginger and onion (or leek) and you have a good basis for anything.

All the best with it. If nothing else, you'll get really good at soup from scratch!

Please come back and let us know how you are going.

This board has the capability to throw endless advice in your general direction - so no question ever goes unanswered. Its a main reason my son isn't bedbound.

 

[linusbert]

There is only one way -- a BIPAP machine with ASV. I will say it was a night and day difference.

thiamin is highly involved with the autonomous system and maybe can help.