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puddleduck’s progress (CFS symptoms)
Yes, when I first introduced raw nuts/ oils to my diet, they seemed to help regulate my sleep cycle! But it seemed like the effect started to wear off after a while. I was still having daytime sleepiness though. I think I'll give the raw oils a few more tries.
I had someone suggest (in a serious, non-jestful way) that I might have narcolepsy, and suggest I see a neurologist, as narcolepsy can appear in many different forms. I did some research and narcolepsy is really not the stereotypical "fall asleep randomly at the drop of a hat" trope (that's not a common form of narcolepsy), but actually the defining characteristic is excessive daytime sleepiness. People say they have about a 10-15 minute interval between when they start feeling tired and when they absolutely need to sleep, which seems like the pattern I fall into as well. I brought the idea of narcolepsy up to my GP and she didn't say anything about it, suggested my sleep issues may be more likely to be sleep hygiene related.... which I disagree with. Have you ever seen a sleep specialist/neurologist?
I just left you a buuunch of questions in your log, @leap7! Sorry if it’s too much. 🙃
Read through the Narcolepsy Fact Sheet, and it sounds like such a terrible disease...
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
That 10-15 minute window is the pattern I fall into, too... Noooooooo! 😩 Lol, I really hope it isn’t this for either of us! Especially the type where there’s permanent and irreversible loss of hypocretin. 😬
But I do appreciate your mentioning it. Thank you. I’ve never done a sleep study, but it has been suggested...If I don’t see bigger changes in this area this year, I will ask my doctors about potentially doing one. Apparently narcolepsy is more common for people with dysautonomia and autism. 😕
Oh and I must sympathize with you regarding your GP’s response... Severe chronic insomnia has more contributing factors than lack of sleep hygiene, for sure. Sometimes doctors don’t appreciate the seriousness of the problem.
EDIT: I forgot to say—I repeated the magnesium l-threonate again! So twice it has proven helpful in bringing me out of a nap attack. 😁 Hope it isn’t a fluke. 🤞
Yesterday, I had one, too, but didn’t grab the magnesium in time. Got woken up before my body was naturally coming out of it, so I took the dose I’d skipped and it seemed to improve alertness pretty quickly. Will keep experimenting.
Thought I would record the foods I’m eating currently.
I’ve completed my supplemental high-vitamin-A-foods-test... Found out that isn’t the direction to take yet lol. 😬
Felt mild hypomania. Heart was racing at night. Got insomnia. My brain started feeling “raw” and inflamed. Became super emotional, and an OCD fear I haven’t had in a long while popped up for me... Digestion wasn’t as badly affected as before (milder constipation), though. But it seems to me perhaps my blood retinol levels were raised temporarily?
🧈 🍳 🥑 The foods were butter, eggs, and avocado. Was thinking the dense calories could be a good thing, and a little extra protein, b12, vitamin E, fat and choline might be helpful for the liver...
I guess the body says “no.”
So with that experiment over, here’s the food list currently:
Primary Starches/Plant-Protien (eaten daily—feel best on these)
- Brown Rice
- Black Beans (higher oxalate) and/or Jumbo White Lima Beans (a.k.a. butter beans - lower oxalate)
Supporting Starches/Plant-Protien (variety throughout the week)
- GF Flours in Homemade Breads/Quick-breads (blends of sorghum, chickpea flour, potato and tapioca starch, mostly)
- Quinoa
- Millet
- White Rice
- Peeled potatoes
- Buckwheat
- Millet/Buckwheat/Rice Pasta
- Non-GMO Tofu (I know this is controversial in the diet wars—don’t come for me lol—but I seem to do better on plant protein at the moment and I will revaluate based upon my reaction)
- Most Legumes
- White Popcorn
Meats
- Beef
- Chicken
Fats
- EV Olive Oil (unheated, limited)
- Coconut Oil (in baking, for sauté)
- Coconut Milk / Shredded Coconut (occasionally)
- Olives (occasionally)
- Sunflower seeds
- Sesame seeds
- Flaxseeds
- Almonds
- Walnuts
- Hemp Hearts
- Sunflower Oil (have stopped using this for now and quit consuming white corn/potato chips)
Fruits + Veg (limited)
- Onions
- Garlic
- Ginger
- Pale Green Cabbage
- Peeled Apples
- Banana
- Sun Dried Raisins
- Dried Cranberries
- Strawberries
- Raspberries
- Blueberries
- Lemons
- Limes
Occasionally I’ll eat vegan dark chocolate, honey, sugar, tea, maple syrup (I do make vegan pancakes sometimes), but I do not want sweets as much as I used to want them so I rarely bake cookies or muffins anymore. I prefer breads and biscuits and crackers.
Haven’t managed to eat beans Karen Hurd style (1/2 cup six separate times during the day lol), but I’ve been having them with every meal at least, and it is improving the movement of my digestion. Karen Hurd and John McDougall are onto something when it comes to fiber! 😂
Detox Drink Update + Probiotic Foods
Have added Redmond Clay to my charcoal and psyllium detox drink. I remember someone (I think Lil’ Chick?) posted a video about a gal whose eczema or psoriasis went away 2 weeks after starting clay in the morning and evening. It took her 2 to 3 years taking it before she was able to stop. She switched it for activated charcoal at one point as well, maybe? Anyway, I figured maybe they work slightly differently and grab different things? I had some clay anyway, so I’m trying it.
Have started to brew kombucha, and am looking into getting water kefir. My stomach has been SO bloated this year... Maybe with all the fiber some of these beneficial microorganisms will stick around!
@puddleduck I believe this is the video to which you refer -- https://www.youtube.com/watch?v=JLt-8uF1bkY
Ah yes that’s it, @kathy55wood! 😁 Thank you. I’m glad to rewatch it because I’d forgotten some details...
It took three weeks for the lady’s skin to clear, and 6.5 years before she was fully detoxed! Though she did have a genetic impairment related to detoxification, that’s a good reminder of how long the process can take.
Also, she was taking 2 teaspoons of clay in the morning and the evening. Skipping one of the doses = failure. Got to do both or you aren’t clearing out the toxicity fast enough to feel any better apparently, which is a good reminder for me.
Testing Jenny's NAD Deficiency Hypothesis
NAD deficiency - is this a major issue for vA toxicity/detox? <-- Convenient link to her thread.
Well, as usual, the niacinamide hasn't done much... So I'm trying to figure out what to test out next!
A search through the major CFS/ME message boards revealed a few reports of CFS patients using both nitric-oxide-boosting supplements L-arginine and/or L-citrulline with dramatic improvement (see post #1, #24, #25, #27, #28, #30, #33, #35):
This review was mentioned there (@leap7 you might find this interesting):
"I have narcolepsy with cataplexy as well as fibromyalgia and Rheumatoid Arthritis and this has come highly recommended by other people with narcolepsy and is discussed at the huge sleep disorder's conferences. I noticed my muscles letting go and relaxing after the second dose on the first day. By the third week my brain fog had cleared totally. It's been extremely helpful! I can't wait to see how I feel in a few months!"
It sounds like L-citrulline is the better choice for people with CFS... This company says people with compromised endothelial function (which CFS patients often have apparently) don't do so well with L-arginine:
Neo40® - The Gold Standard in Nitric Oxide Restoration | HumanN
Not sure which supplement to order yet, but L-citrulline is on my list to try next.
@puddleduck have you tested nicotinic acid (flushing Niacin), it is the recommended one for NAD in this theory.
Oh dangit. I was taking a "Flush-Free Niacin" with the Inositol Hexanicotinate form apparently...Lol! I've taken the other stuff before (I remember the flush effect), but not for years and years. I will look for nicotinic acid. Thank you for catching my error @orion!
Quote from puddleduck on March 27, 2022, 10:30 amTesting Jenny's NAD Deficiency Hypothesis
NAD deficiency - is this a major issue for vA toxicity/detox? <-- Convenient link to her thread.
Well, as usual, the niacinamide hasn't done much... So I'm trying to figure out what to test out next!
A search through the major CFS/ME message boards revealed a few reports of CFS patients using both nitric-oxide-boosting supplements L-arginine and/or L-citrulline with dramatic improvement (see post #1, #24, #25, #27, #28, #30, #33, #35):
This review was mentioned there (@leap7 you might find this interesting):
"I have narcolepsy with cataplexy as well as fibromyalgia and Rheumatoid Arthritis and this has come highly recommended by other people with narcolepsy and is discussed at the huge sleep disorder's conferences. I noticed my muscles letting go and relaxing after the second dose on the first day. By the third week my brain fog had cleared totally. It's been extremely helpful! I can't wait to see how I feel in a few months!"
It sounds like L-citrulline is the better choice for people with CFS... This company says people with compromised endothelial function (which CFS patients often have apparently) don't do so well with L-arginine:
Neo40® - The Gold Standard in Nitric Oxide Restoration | HumanN
Not sure which supplement to order yet, but L-citrulline is on my list to try next.
So, L-citrulline apparently is a really good treatment for Brain fog as well? I'm having brain fog for a long time now and nothing that i tried yet seems to help it.
Hi there,
I relate to your story, especially in the last yr or so as I've been dealing with chronic fatigue. It was brought on by intense emotional stress that went on for months. Still recovering!
I had a thought about your nap attacks. Have you ever tested your blood sugar? It could be related to a sudden drop in blood sugar. Or a big rise in blood sugar such as after a meal kinda like a food coma. Balancing blood sugar is difficult but possible. I had managed to do well for a few years in regards to blood sugar issues, but then whenever I go through some kind of severe stress I feel like it comes right back. The eating disorder recovery really helped me to get in control of it as well. When I get obsessed with what to eat it definitely sets me back. You mentioned that doing the recovery really helped you, do you think doing food diets has caused a low level of stress surrounding food?