• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Has anything helped your "brain fog"?

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Has anyone discovered anything that has helped to improve your cognitive clarity and focus, either prescriptions (e.g., Wellbutrin, Modafinil) or supplements?

Neuroprotek, .5 mg of LDN. Neuroprotek had actually sold out a year and a half ago, so I bought individual powders and mix as close to neuroprotek as possible. Works better as for once I can afford the dose I should be on.
 

Nico

Senior Member
Messages
104
Location
New York State
About a 1 1/2 years ago I tried low-dose Abilify. By far, that helped cognition the most in a sustained way. Until it stopped working at about 6 1/2 months (like for most pwME who've try it). When it started not working any more, the "coming down" was really awful (just to forewarn). All of a sudden my legs got weak/buckled unpredictably again, I suddenly struggled with zoom calls - like dramatically, over night. Also, went into a very bad depression for about 2 weeks after stopping it. I sometimes think of to trying to go back on it sporadically because I feel I'm struggling a lot more. (I also gained 10-15 lbs which have stayed).

I take something called "Total Heart 2" by Nutri-West (Natural Healthy Concepts, consult required). I feel like that can help for a short time, kind of clear things up. I sometimes take "Total Probiotics" also by Nutriwest, and need to use it cautiously b/c acerola is often too stimulating for me. However, if I time it well, I feel a little clearer for a couple of hours.

Pausing here due to brain fog....
 

hapl808

Senior Member
Messages
2,053
About a 1 1/2 years ago I tried low-dose Abilify. By far, that helped cognition the most in a sustained way. Until it stopped working at about 6 1/2 months (like for most pwME who've try it). When it started not working any more, the "coming down" was really awful (just to forewarn). All of a sudden my legs got weak/buckled unpredictably again, I suddenly struggled with zoom calls - like dramatically, over night. Also, went into a very bad depression for about 2 weeks after stopping it. I sometimes think of to trying to go back on it sporadically because I feel I'm struggling a lot more. (I also gained 10-15 lbs which have stayed).

What was your dosage for LDA and did you have the leg problems before? Concerns me as I'm considering trying it, but already have significant muscular and cognitive problems.
 

Nico

Senior Member
Messages
104
Location
New York State
What was your dosage for LDA and did you have the leg problems before? Concerns me as I'm considering trying it, but already have significant muscular and cognitive problems.
Are you part of the Low Dose Abilify facebook group? I found it helpful, just in case of interest.

I'm 20-30 on Dr. Bell's severity scale. The LDA helped me function more consistently at 30 to, let's say 33 - which was significant. The sudden leg weakness (after 6 months), I'd say, was just me having adapted to a higher level, then it's like it just stopped working. Maybe like a phone signal cutting out. I started very low: .075 mg and over 4 months reached 2 mg.

(My condition has worsened in the past 1 1/2 years, esp OI/POTS which I don't think was due to the LDA, rather believe from having had 4 C19 vaccines, and maybe also menopause.)

(Just a note: I only take 1/2 of the Total Heart 2, and I chew it before swallowing.)
 

hapl808

Senior Member
Messages
2,053
I'm 20-30 on Dr. Bell's severity scale. The LDA helped me function more consistently at 30 to, let's say 33 - which was significant. The sudden leg weakness (after 6 months), I'd say, was just me having adapted to a higher level, then it's like it just stopped working. Maybe like a phone signal cutting out. I started very low: .075 mg and over 4 months reached 2 mg.

So a consistent improvement, but not a remission type reaction?

I assume you mean 0.75mg and not 0.075mg? I think my doctor discussed starting at 0.25mg or 0.5mg.
 

Nico

Senior Member
Messages
104
Location
New York State
So a consistent improvement, but not a remission type reaction?

I assume you mean 0.75mg and not 0.075mg? I think my doctor discussed starting at 0.25mg or 0.5mg.
.075 mg

I'd like to stay on this thread to stay on topic for brain fog. The LDA facebook groups have a lot of different patient experiences.
 
Last edited:
Messages
5
Celebrex is helping my brain fog and depression tremendously. LDN, Ketotifen, and Quercetin have also made an impact. The celebrex scares me because it has a warning about increasing risk for heart attack or stroke and I'm worried my doctor won't let me take it long term but honestly I'd be willing to exchange 20 years of life for having some years that are actually good. Being able to think changes everything. Even if I'm exhausted and my body is struggling, I can still have some quality of life now - I'm starting to pick up some hobbies again!
 

Nico

Senior Member
Messages
104
Location
New York State
Came across this post this evening.
https://pubmed.ncbi.nlm.nih.gov/36080178/

Silk FEH were shown to decrease the levels of the pro-oxidant and pro-inflammatory mediators interlukin-1 (IL-1β), IL-6 and tumor necrosis factor-alpha (TNF-α), protecting the cholinergic system from oxidative stress, thus enhancing ACh levels in the brain, which is known to promote cognitive functions. In addition, the expression of brain-derived neurotrophic factor (BNDF), which is involved in the survival of neurons, is enhanced, and an increase in the expression of the phosphorylated cAMP response element-binding protein (p-CREB) occurs, which is known to play a positive role in cognitive functions. No adverse effects have been reported in association with the use of silk FEH.

🤔
 

Jo86

Senior Member
Messages
197
Location
France
Came across this post this evening.
https://pubmed.ncbi.nlm.nih.gov/36080178/

Silk FEH were shown to decrease the levels of the pro-oxidant and pro-inflammatory mediators interlukin-1 (IL-1β), IL-6 and tumor necrosis factor-alpha (TNF-α), protecting the cholinergic system from oxidative stress, thus enhancing ACh levels in the brain, which is known to promote cognitive functions. In addition, the expression of brain-derived neurotrophic factor (BNDF), which is involved in the survival of neurons, is enhanced, and an increase in the expression of the phosphorylated cAMP response element-binding protein (p-CREB) occurs, which is known to play a positive role in cognitive functions. No adverse effects have been reported in association with the use of silk FEH.

🤔
got to trying it yet ? Or anyone else here ?