11 replies to this topic

[Garch2010]

Hi,

Does anyone experience mild muscle weakness (drooping head, drooping shoulders, unblinking eyes, weak knees) and a sleep attack after eating?

[sk8aplexy]

I get sleepy after eating often, but it's not cataplexy. Mainly pleasurable emotions from laughing to perhaps someone smiling at me unexpectedly, a person on the street asking me for change, or even over-exhausting myself in certain sport activities; these can trigger a cataplexy which for me, are very brief 5-15 seconds down, but severe in that I either freeze entirely (then fall) or I fall, basically immediately into whatever contorted position I end up in...

Am curious.
When you say Sleep Attack with Cataplexy, do you mean that you Cataplexy (collapsing, or just going entirely weak and to the point that you must lie down?) than wake up after sleeping?
Or, as is sort of also within the last sentence, you get extremely sleepy and/or weak to the point you must lie down to sleep?

I have read of this though which sounds like it happens directly within a time-frame after eating, you go paralyzed for up to hours (my limited understanding of such, is only that): Hypokalemic Periodic Paralysis

https://en.wikipedia...iodic_paralysis

[Garch2010]

Hi,

Yes sleepy and weak after a meal. I don't usually collapse although I do feel weak if I try and remain standing. My head and shoulders will droop. Is this just a sleep attack? I do wake up sometime later and feel just fine.

[Mrs. Bento]

I have made some major changes to my diet among other things and have found these symptoms to be alleviated as a result. I've experienced both the muscle-weakness after eating (depending on what's eaten) and I've gotten the laugh weakness. It's especially strong when I think something is really hillarious. I can hardly get the whole laugh out, I have to stop and compose myself cause I can feel where it's gonna lead and I don't like it. I have also seen a Narcolepsy Life Doctor in the Bronx (not too far, I live in Jersey) who suggested eating certain foods during the day and to avoid them at night as they can cause sleepiness and fatigue for us. There was also a seperate list of foods to avoid during the day and to eat at night to help promote sleepiness and restful sleep. It explained high levels of serotonin and melatonin produced in the body as a reaction to the foods. I will try to locate it, but fear that it's been thrown away after a recent desk clean-up. The other suggestion one might make is to keep a food journal. Mark down what your eating and the type of muscle reaction your getting up to two hours after, (the time it should take to digest and get into your system.) You could find that your system may be sensitive to certain foods, more than others.

[Mrs. Bento]

Here's the list:


avoid during the day eat at night
Beef, chicken, turkey, dairy, soy products, pumpkin seeds, yeast, watercress, chickpea, garbanzo, chives, butternut, (banana, daikon, sweet corn, tomato, rice all create melatonin)

Tryptophan is the precursor of serotonin
These foods are on both lists, daytime and nighttime.
Almonds, oats, cauliflower, peanuts, pumpkin, asparagus, collards, kale, spinach

Avoid at night eat during the day
Apricot, celery, eggplant, lentils, pepper, string beans, black kidney beans, wheat, most beans, soybeans, pea, lettuce, corn, pumpkin fruit, cashew, summer squash, brazilnut, potato, macadamia, ceyenne, chili, hot pepper, red chili, tabasco

Tyrosine

Diversify, balance, small helpings, rotate foods

[Garch2010]

Thanks for your advice.

Can cataplexy and a sleep attack happen at the same time then? Sometimes I'll start going all limp at the neck and my head will fall forwards, then my shoulders will go and I'll start to slump forwards, then my hands go (if anything in them I drop it) then my knees and ankles? I've only fallen to my knees once, rarely though. Sometimes it passes and I'm not sleepy. Othertimes I'm very sleepy afterwards? Is this normal? Is this a sleep attack or cataplexy?

The attack normally comes on slowly e.g. 5 minutes between my neck muscles going limp and my knees going weak? This doesn't seem typical of cataplexy?

[sk8aplexy]

Interesting.?
I wish I knew and could give a definitive answer, I'm no doctor although have been through a lot of trial and error with my own conditions (not that that means anything..).
Please don't take my words as trying to shoot you down nor say that it may not be Cataplexy, as such is not my intent and I really have no idea.

>"Can cataplexy and a sleep attack happen at the same time then? "

If you meant perhaps, could cataplexy result in sleep, I'd say yes.
But (my understanding of it and from my personal experience, that is with my own severe cataplexy -and we must remember that it is all different for each of us all, somewhat) there must be a trigger though, for it to be cataplexy.

>"I've only fallen to my knees once, rarely though. Sometimes it passes and I'm not sleepy. Othertimes I'm very sleepy afterwards? Is this normal? Is this a sleep attack or cataplexy?"

Again, if there's no trigger from some emotion or occurrence, than it likely is not cataplexy.
After I have a cataplexy episode (which only last a few 5-15 seconds, before all of my muscles come back, from the complete temporary paralysis where I'm left able to think, see and hear) I feel a bit weak, but never sleepy (I don't really experience so much the EDS though, or it is rather in the form of constant fatigue which is not what I'd consider tiredness, typically)...

>"The attack normally comes on slowly e.g. 5 minutes between my neck muscles going limp and my knees going weak? This doesn't seem typical of cataplexy?"

That, as you point out, doesn't seem necessarily fitting to Cataplexy.
I think you may be describing more of an intense sleep attack..?
Perhaps though, there's cataplexy occurring in some weird reactionary way (as such is part of cataplexy) to the sleep attack occurring and perhaps you trying to fight it (over that 5 minutes?)?

I hope you can figure, whatever it is, out and find some ability to either rid it, or better it.
Best of luck though, and I'd be curious in the future to any possible discoveries; as I wonder for myself to other matters which I may just be oblivious of, being a part of whatever this cataplexy is...

[Garch2010]

Thanks,

I'm waiting for my sleep study, but is six months away. Welcome to the UK NHS waiting lists!

I thought it might be syncope but the ECG came back normal and I don't feel dizzy when I start to go limp. Also, it has a pattern. My neck muscles go limp and I can't hold me head up. Then my shoulders, etc. I will likely start to slur my speech a little if someone tries to talk to me. This doesn't really fit the symptoms of syncope. I also don't get dizzy when going from supine to standing, which would be another sign of classical syncope.

I've looked into Hypokalemic Periodic Paralysis as you suggested. But this doesn't explain the pure sleep attacks I also have from time to time. ie I might feel fine - not too sleepy - then out of nowhere I have an almost irresistible urge to sleep. If I do sleep I wake up 15 mins later and feel refreshed. It also doesn't explain why my symptoms get worse after a few nights of poor sleep. I also tried potassium supplements just as an attack kicks off but this makes no difference.

I also go into REM sleep sometimes within a couple of minutes of sleep onset (I have a home EEG). Also experience weird vivid voices and music just as I'm about to go to sleep and sometimes a sensation of floating or an odd smell that isn't there. Also have very poor sleep continuity. Even though I'm asleep within a few minutes I wake up, up to 30 times every night. I'm not aware of waking up but the home EEG detects it. I'm not at all stressed, but still wake up ie I don't have racing, anxious thoughts at night - so no obvious reasons for waking up?

In the winter the EDS is not at all bad, only problematic when the weather warms up then I could fall asleep at any moment.

Perhaps though, there's cataplexy occurring in some weird reactionary way (as such is part of cataplexy) to the sleep attack occurring and perhaps you trying to fight it (over that 5 minutes?)?
Yes I'm normally out and about and desperately trying to fight it!!! The more I try fight it the limper I become.

All very confusing really.

[spit]

This happens to me constantly, yes.

For the record, though, I am a very tough diagnostic case, so I can't say for sure that what I have is narcolepsy/cataplexy. Strong suspicion all around, and it's how my sleep doctor is treating it, basically until further research makes it clearer what to do about patients like me. If it's not narcolepsy, then we're all flabbergasted, at this point.

But yes, it's just like this. Eat, weak, droop, sleep. I've gone limp so far as to very nearly faceplant into my plate, about 5 minutes after a solid meal, semi-regardless of what the meal includes, and it leads directly to the greatest drowsiness ever. I've experimented with types of food, and it seems for me to be more about the time of day (I can eat without this reaction until about 11 a.m., after that I'm screwed).

If I go into conjecture land, I will say that there are strong signals to the parts of the brain involved in narcolepsy from the stomach and gut, they're all interconnected -- so it's completely conceivable that some signal from the digestive tract is freaking out the narcoleptic brain a bit. The protein hypocretin, which seems to be at the core of narcolepsy, is also called orexin, and was discovered under that name by people researching appetite, digestion, and metabolism -- it seems to be the link between sleep regulation, emotion, appetite, and basic metabolic control.

This disease is about a lot more than sleep, I think research is making that clear now.

[kanders]

My son who was just diagnosed a few months ago has a similar reaction to food. He is only 5 years old. He has actually fallen asleep while eating. He would be setting at the table eating a snack in the afternoon and then fell out of his chair unto the floor. I made sure he was okay and he slept for about 10 min. Then he woke up and finished his snack. Have you found any other research or information about the connection between food and sleep attacks?

[angeline]

I have been recently diagnosed with malabsorption syndrome. I have to do an elimination diet. I am sensative to several foods that block absorption. So I have to stop eating a lot of things and take enzymes and probiotics to get my colon healthy, enabling it to metabolize nutrients properly. So far I have found that almonds are a huge trigger for me. If I eat a little, I'm okay. But if I eat a little 2 days in a row, the weakness, fatigue, head dropping. I actually feel so heavy in the torso, it's hard to sit up and my head just flops forward. If I am walking when it happens, I freeze in place then go limp; the muscles do not work properly at all.The symptoms can clear up in a few minutes or it can take days.

I do believe that foods can trigger this narcolepsy, cataplexy, or periodic paralysis or whatEVER it is....

[Hank]

This happens to me constantly, yes.

For the record, though, I am a very tough diagnostic case, so I can't say for sure that what I have is narcolepsy/cataplexy. Strong suspicion all around, and it's how my sleep doctor is treating it, basically until further research makes it clearer what to do about patients like me. If it's not narcolepsy, then we're all flabbergasted, at this point.

But yes, it's just like this. Eat, weak, droop, sleep. I've gone limp so far as to very nearly faceplant into my plate, about 5 minutes after a solid meal, semi-regardless of what the meal includes, and it leads directly to the greatest drowsiness ever. I've experimented with types of food, and it seems for me to be more about the time of day (I can eat without this reaction until about 11 a.m., after that I'm screwed).

If I go into conjecture land, I will say that there are strong signals to the parts of the brain involved in narcolepsy from the stomach and gut, they're all interconnected -- so it's completely conceivable that some signal from the digestive tract is freaking out the narcoleptic brain a bit. The protein hypocretin, which seems to be at the core of narcolepsy, is also called orexin, and was discovered under that name by people researching appetite, digestion, and metabolism -- it seems to be the link between sleep regulation, emotion, appetite, and basic metabolic control.

This disease is about a lot more than sleep, I think research is making that clear now.

Orexin is primarily produced in the brain. People with N/C will have undetectable levels.

Orexin is also produced (to a lesser degree) in the gut. These Orexin levels are highest when you are hungry, and lowest after you eat. It is esssentially a biological mechanism to provide energy (alertness) to eat, and then relax after you have eaten. We see this all the time: people yawning after a big meal, siestas in some cultures. There is a drop in alterness after a meal.

Since the only Orexin we have to work with is from the gut, is highest when hungry and lowest after eating, then we are in a delicate balancing act. For PWN, that orexin dip after a meal causes a greater impact because we are already battling sleepiness. We, essentially, feel every bump in the road.

Small meals throughout the day seem to work better than a big, heavy lunch.

Since I have been on Xyrem, I no longer experience this in the same way. I can eat a sensible lunch and I am ok.