What Fixed/Aided Your Brain Fog?

[Wonko]

Predictable I know but I've found CoQ10 helps. It takes a while, initially it reduces the sensations of brain fog, but doesn't increase mental capacity. A few weeks later capacity increased, nowhere near old normal but enough to help.

Downside I found rapidly, it's possible to crash really fast (about an hour of low grade stuff, still stuff I couldn't do previously but low grade/trivial stuff) when my brain isn't limited by all the fog. Full on PEM occurred the next day and lasted for a few days.

So getting rid of all the fog, may not be wise, unless you have to have just a little more brain for a short period.

 

[hamsterman]

Predictable I know but I've found CoQ10 helps. It takes a while, initially it reduces the sensations of brain fog, but doesn't increase mental capacity. A few weeks later capacity increased, nowhere near old normal but enough to help.

Downside I found rapidly, it's possible to crash really fast (about an hour of low grade stuff, still stuff I couldn't do previously but low grade/trivial stuff) when my brain isn't limited by all the fog. Full on PEM occurred the next day and lasted for a few days.

So getting rid of all the fog, may not be wise, unless you have to have just a little more brain for a short period.

Hmm.. interesting. how much did you take?

 

[Wonko]

Hmm.. interesting. how much did you take?

At that time I think I was taking 400 a day, with the odd accidental increase to 600 (my organisational abilities re supplements, or anything that needs taking more than once a day, with food, empty stomach etc was/is a bit iffy)

 

[Wishful]

I tried CoQ10. I didn't notice any benefits. Apigenin did reduce my brainfog enough that I bought more, but I'm not sure if it's still having any beneficial effects for me. I think apigenin is one of those things that worked only for a short time and then stops working ever after. ME/CFS just seems to keep adapting to keep me miserable.

 

[JaimeS]

I tried CoQ10. I didn't notice any benefits. Apigenin did reduce my brainfog enough that I bought more, but I'm not sure if it's still having any beneficial effects for me. I think apigenin is one of those things that worked only for a short time and then stops working ever after. ME/CFS just seems to keep adapting to keep me miserable.

And how much did you take of CoQ10 and Apigenin?

 

[Wishful]

I can't remember the CoQ10 trial; probably the recommended daily amount followed by double the amount for a while. I didn't try mega-dosage for long periods though.

Apigenin gave a slight--but noticeable--reduction in brainfog at 50 mg/day. Increasing the amount didn't seem to help more. The improvement showed up fairly quickly though; I think I noticed the improvement the next day.

Of the drugs/supplements I've tried for ME/CFS symptoms, most work within 24 hrs. Prednisone was an exception, since it took 5 days to start working the first time, two days the second time, and never had any effect after those two trials.

 

[JaimeS]

I can't remember the CoQ10 trial; probably the recommended daily amount followed by double the amount for a while. I didn't try mega-dosage for long periods though.

Still not 'mega' -- CoQ10 dosages that are safe run the gamut.

You might get 100mg as a 'normal' dose, or 200mg. Double that is still 6 - 12 times less than what I take on an average day (2.5-g). Look up the dosages used in multiple sclerosis and you'll see what a high, but still safe, dosage of CoQ10 is.

Of the drugs/supplements I've tried for ME/CFS symptoms, most work within 24 hrs.

I agree. I think there's a subset of patients where metabolism is either very, very slow -- or their digestive systems are screwy enough that they're not absorbing, much. But I'm an easy-reactor, which is the other half of us. I usually notice almost immediately if something is going to help or harm.

But the dose does matter; and in the case of CoQ10, the form and the brand also seems to matter.

-J

 

[cfsinatx]

First and foremost adderal regular release - 20mg at start of day, another 10mg 2.5 to 3hrs later and then 10mg after post lunch short nap gives me 3 to 6 hrs productive time. Buttressed by strategically consumed 2 large glasses of caffiented ice tea and 2 caffienated diet sodas.


Other supporting supplements: D-Ribose daily and 3mg B12 six days a week

 

[Isaiah 58:11]

1. Mold avoidance
2. Caffeine
3. Zyrtec twice daily
4. https://beyondhealth.com/cell-repair-quercetin-240-capsules.html 2 capsules twice daily
5. Nicotine
6. Sleep deprivation
7. Outdoor meditation when I can handle the weather

 

[Arius]

First and foremost adderal regular release - 20mg at start of day, another 10mg 2.5 to 3hrs later and then 10mg after post lunch short nap gives me 3 to 6 hrs productive time. Buttressed by strategically consumed 2 large glasses of caffiented ice tea and 2 caffienated diet sodas.


Other supporting supplements: D-Ribose daily and 3mg B12 six days a week

If you're using caffeine and drugs to push yourself into being productive, you're basically just borrowing energy from the future and promoting a boom-and-crash cycle that is dangerous at best and probably ultimately harmful. Caffeine is not a miracle drug, it just tricks your body into burning your extremely limited energy faster.

I've found D-Ribose, omega 3s, 5-htp, Alpha lipoic acid (600mg), and Acetyl-L-Carnitine (1500mg) helpful. But I don't recommend them for long term use. Basically your body stops manufacturing anything you provide artificially. So my experience has been that the supplements help at first, then I develop a tolerance, and then as the months wear on, they actually start reducing my energy.

The only sustainable fix for my brain fog has been eating a basically paleo diet free of allergens. I found that I have a problem with casein and gluten. When I stopped eating them, I made huge strides in memory, the amount of time I can focus for, and how much I can read, and my 3-year headache is now gone. I went on and off them a couple times to be sure. Each time, the symptoms came right back and then disappeared when I cut them out. I also can't eat nightshades, which were giving me diarrhea.

If you're serious about fixing your brain fog, try fixing your guts. A leaky gut will allow foreign proteins and toxins (such as hydrogen sulphide) into your bloodstream, poisoning your brain in the process.

 

[hamsterman]

If you're using caffeine and drugs to push yourself into being productive, you're basically just borrowing energy from the future and promoting a boom-and-crash cycle that is dangerous at best and probably ultimately harmful. Caffeine is not a miracle drug, it just tricks your body into burning your extremely limited energy faster.

Yes, assuming you have ME... stimulants can be a catastrophe in some cases. I was given Modafinil (from a dr. who knew nothing about CFS/ME)... and it worked great for a few months... until I started believing I had more energy than I actually had. Eventually it caused me to crash for a couple months... and lowered my overall baseline. I've heard this same story from several people with ME.

I do use low dose stimulants on occasions... but very carefully, and only when I am actively monitoring my heart to make sure there is no risk of triggering PEM.

If you don't have M.E., then this isn't relevant... but like Arius said.. its still just 'borrowing energy'.

 

[MAF14]

If you're using caffeine and drugs to push yourself into being productive, you're basically just borrowing energy from the future and promoting a boom-and-crash cycle that is dangerous at best and probably ultimately harmful. Caffeine is not a miracle drug, it just tricks your body into burning your extremely limited energy faster.

I've found D-Ribose, omega 3s, 5-htp, Alpha lipoic acid (600mg), and Acetyl-L-Carnitine (1500mg) helpful. But I don't recommend them for long term use. Basically your body stops manufacturing anything you provide artificially. So my experience has been that the supplements help at first, then I develop a tolerance, and then as the months wear on, they actually start reducing my energy.

I agree with stimulant usage.

Of all the supplements you listed none should cause a "tolerance" to develop.

A carb, healthy fats and an amino acid... Those are all supplements that even healthy people take and say good things about. Maybe they helped you feel better and you accidentally over did it physically.

 

[aquariusgirl]

I think there's a subset of patients where metabolism is either very, very slow -- or their digestive systems are screwy enough that they're not absorbing, much.
-J

I think this is spot on. No easy fix for this but I sure hope some researchers are looking at this...

 

[MAF14]

Well... I just ordered the following so we'll see if any help

Quercetin
Yucca
Alpha GPC
Micronized DHEA
RS (Bobs Red Mill Unmodified potato starch)

 

[kallogann]

L-Ornithine i heard is very good for clearing ammonia.

Every single ccustomer review i read about this stuff was positive in every way

 

[frozenborderline]

Late to thread- I discovered I was reactive to mold 2 years ago.

My cfs lasted about 6 years. I had the usual pem confirmed diagnosis by 2 exercise studies consistent with cfs.

About year 1 into my illness I was diagnosed with add; I had mouth diarrhea and my personality was “ hyper” ;
My brain felt inflamed. This continued and then started getting emotional meltdowns by year 4-5.
At year 6 thought mold might be in play and took a sabbatical in Death Valley. I did an air B and B in Tecopa . Felt too ill to tent camp.
Had a dramatic improvement after Death Valley and cholestyramine.

After selling our home and putting possessions in storage and tent camping for a week I finally feel like myself
again. I have my physical strength and stamina back but the cognition is finally normal again if I remain free of exposures.

My son was diagnosed with add and depression at age 12 . After moving to our apartment after 3 months he went off all of his medications and his grades have improved greatly. He is now 17. His psychiatrist was taking notes from me at his last appointment. He had rages and meltdowns almost had to put him in a psyche ward. He had been a happy loving intelligent child and it seemed to come from nowhere. I am glad I was ill in a way because we never would have though mold exposure would have caused mental illlness symptoms.

This took about a year after my trip to Death Valley. Still get “ hits” but I am slowly moving forward.

Husband was affected too. Took him a year to believe finally believes after seeing the health of me and my son improve after getting away from whatever was contaminating our old home. .

How much cholestyramine did you use and did you start it while in the desert to speed things up ?

 

[MAF14]

How much cholestyramine did you use and did you start it while in the desert to speed things up ?

And what made you come to the conclusion mold was a problem? When you say mold, is it exposure to moldy areas or mold in the body?

 

[SueJohnPat]

We found mold in our basement. I also read if Erik Johnson’s experience and researched Dr Shoemaker.
I did not think it was necessary to spend thousands of dollars just got my family to prescribe cholestyramine ( which is a treatment for the chronic diarrhea I was having. )
I shut the basement door and took 2 packets of cholestyramine a day . I started this in August . Felt an upward boost in energy. I continued the cholestyramine while in Death Valley California for 3 weeks continued for about 6 months.
I have no conclusive proof that it was “ mold” I was just experimenting and researching to see what if anything could help.
We moved out everything in storage and I sleep in a travel trailer but I am at 80%.
I am also doing DNRS neural retraining.
I am in Washington this week to raise awareness for me cfs so there can be real research and now this guessing game.

 

[Belgiangirl]

Seems diairy, sugar, and preservatives / processed foods make it worse for sure.
Here brain fog goes usually hand in hand with feeling very weak and unsteady on my feet in general, orientating problems, equilibrim problems, dizziness and lightheadedness and drowsiness.
When extremely tired / exhausted (in bed ridden periods after a very very deep crash) my short term memory is gone too...

Recently although I do also experience more general cognitive problems...

Cola or coffee - though my stomach can't digest it unless taken before lunch and when it's still realy hot so i mostlly do capuccino- can help. Nothing to do daily because I get exhausted from it / completely wired.

What helps: avoiding the aforementioned.
Seleno-methionine did help some time for me but doesn't do the trick anymore
prolonged lecithin use i have always thought was benefical for me

Because of price (and nonsystematic person) i always discontinuate supplementing after a while.

Ordered the herementioned phosphadylisterine. But see some also use - coline? What is the difference? :-/