Brain fog

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Jemima

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Hey DebMarPir,

It doesn't seem to be something that we get much support on, does it! I did a bunch of reading - found a few fibromyalgia articles about the mitochondria issue and then a bunch more about supplements that can help.

The first thing I found that made a difference for me was taking CoQ10 and Alpha Lipoic Acid daily. This helped a lot with my work - I'd had points before when it felt like forming sentences was like climbing a mountain!

More recently, I found Acetyl L-carnitine, which I've added in too. Gives me more energy mentally and physically. It needs to be the acetyl kind, as this can cross the blood-brain barrier.

I recommend going on a Google and looking at what each supplement does. It really helped me to understand what I was feeling, and how different things can help - then it's just a case of educated guesses and experimenting!
 

JayCS

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mitochondrial support, Jemima?
CoQ10 and Alpha Lipoic Acid .... Acetyl L-carnitine
After being a bit reluctant about these from what I'd read, not sure if it was what I needed, as I probably hyper over my fog...

I started ALC a few weeks ago, due to Jemima's success with it for alertness, increasing it now to 3x0.5g. I've also found study evidence that it can help with the blood fat lp (a) I need to keep low, and I've seen it mentioned for pain (a pharmacy told/sold it me, no study), fatigue and ADHD (but only an exploratory study from 2004 that was optimistic, and a pilot trial from 2007 on kids for ADHD wasn't sure, thinking maybe for ADD (cf. 'brain fog'...)). And it's improved by Q10. I was afraid of diarrhea-sfx, hasn't happened at 1.5g tho. Interestingly, the study ends "Acetylcarnitine had main effect on mental fatigue and propionylcarnitine on general fatigue." Generally that connection'd support my idea that brain fog may be counted as mental fatigue. But what about trying propionylcarnitine, PLC)? Never heard of that, there's not even a wikipedia article. A GI-review on Carnitine derivatives from 2012 has an encouraging abstract-ending: "ALC and PLC are considered well tolerated without significant side-effects number of therapeutic effects possibly come from the interaction of carnitine and its derivatives with the elements of cellular membranes." And also that there are studies on PLC for cardiovascular stuff, that'd be for me too. Then I saw someone say ALC is a "women's vitamin". Intrigued I found a study from 2018 on its role in female infertility concluding "While both LC and ALC have their applications in improving female fertility, ALC is preferred for its better antioxidant properties and LC for amelioration of energy supply to the cells. Wdnt that mean we should be taking LC, not ALC? And am I now gonna get babies? 🍼👶👶👶🚼

Trying to save a tooth, I've also actually started CoQ10 now for my gum/tooth inflammation, as ubiquinone, also increasing to 10x30mg/d, altho I'd unsuccessfully done a lesser dose last year, because a kinda functional doc had it on his protocol for ATP to increase it from 2x30mg to 2x100mg/d and back over 6 weeks. Might be good as antioxidant, for heart, energy, ATP, FM (& migraine), but probably not CFS. Reduces pain, tenderness, fatigue, and sleep issues, possibly (orally) blood pressure, blood fats, blood flow & gums, taken for 3-6 months.
I've read ubiquinol recommended a lot, due to much higher bioavailability. But also the caveat on one site, that the normal form, ubiquinone is better researched. So I was thinking of sticking to ubiquinone, but then I saw that for ubiquinol there is really only one brand with a high quality, which made me get laaaazy instead of spending hours which brand of ubiquinone I should take... (been doing that for other supps, where I could see some brands where faking it using a low concentration or not quite so good fillers etc.). Loads of abbreviations for CoQ10, the German Q10 is shorter...

Still not sure about ALA, seems specific for Jemima/you. But thought that often enough before, so it's still tucked at the back of my head.

But what I was actually gonna talk about is what is said to be food, no: good for mitochondria/ATP and helps me lots for energy/fatigue/fog is:
NADH (also for post exertional malaise, doesn't work for everyone, stops working for some, but for me up to now it's fast and very effective).
D-Ribose (also for muscle fatigue; but it seems to have GI-sfx, so I micro-dose at .1g as often as I like (2-3x on trips etc.), gives longer power than glucose sweets (in Germany "dextro energen"), but similar to that feeling, hopefully not too bad for my blood fats).
and looking up if NAC for fatigue and inflammations I've rediscovered a brilliant series of pages on The Mitochondrial Enhancers for Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Series by Cort Johnson on his recommendable healthrising site, where he goes thru
I: D-Ribose, CoQ10 and PQQ, II: L-carnitine and Acetylcarnitine, III: Magnesium, N-acetyl cysteine (NAC), V: Oxaloacetate.
(Ehm, what's PQQ and what's oxaloacetate??)
Drat, finding that now I cdve saved all my blurb... 🙄On the other hand I think I'd like it if wasn't so keen=needy on getting background in detail myself, I'd love to read these concise notes if I'd see them anywhere... so I guess/hope it's OK.
 
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sunkacola

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How do I find out more about mitochondrial support, Jemima? In other words, what helped you? I have been actually complaining a decade to my doctors about this problem, thinking it was from menopause (which can cause this) and another linked it to stress (which can, too, as I had a lot from the death of one parent and being caregiver to another). Now I find that those may well have played in but fibro was a big one, maybe the biggest. I have already found that stress and insomnia (also suffered in one way or another for years) are triggers. My body just got to the point it was doing such weird things my internist here was able to label it fibro. In the past, I was more "normal" lol.
What has really worked to support mitochondrial function for me is taking Acetyl L-carnitine every day and eating arugula daily. Both things are very good for that. Beets are as well, but I cannot stand beets. I was having daily energy drops in the afternoon, going from being able to function normally to being flat on the couch unable to do anything. My chiropractor recommend those things to me and as soon as I started making sure I had both of those things every day that problem vanished. Occasionally, it has returned, and every time I realize that on that day I did not take the L-carnitine, so I think that is what is helping me.

You can also Google the question and see what you find out.

and yes, stress is a huge trigger for FM. It certainly exacerbates it, and I think it can over time and with build-up also cause it to start. Even one terribly traumatic event can trigger FM in people.
 

aclarkwhitman

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I feel you on the pill thing. I haven’t found a solution. I’ve also convinced myself I dropped it and my dog or cat had gotten it. If I’m really unsure, I usually just skip taking it, which like you said makes counting the pills useless.
 

Jemima

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Occasionally, it has returned, and every time I realize that on that day I did not take the L-carnitine, so I think that is what is helping me.
I'm so happy to hear that it's working for you.
 

Momzilla

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I found this study interesting
On the basis of these observations, we hypothesized that an intervention designed to improve mitochondrial function would have beneficial vascular effects in patients with cardiovascular disease. Recent experimental studies have shown that administration of alpha-lipoic acid and/or acetyl-L-carnitine can reduce oxidant production and improve mitochondrial function in models of aging Furthermore, these compounds reduce blood pressure and improve endothelial function in animal models of hypertension and diabetes The present study was designed to examine the effects of combined alpha-lipoic acid/acetyl-L-carnitine treatment on vascular function and blood pressure in patients with coronary artery disease.
 
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Jemima

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mitochondria/ATP
Interesting story in the news this morning.

Apparently the UK are trialing a new drug that targets mitochondrial dysfunction called AXA1125. It was developed with long Covid in mind, but may be useful in treating other conditions "including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

Perhaps something interesting for us fibromites down the road too 👀
 

sunkacola

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I found this study interesting
On the basis of these observations, we hypothesized that an intervention designed to improve mitochondrial function would have beneficial vascular effects in patients with cardiovascular disease. Recent experimental studies have shown that administration of alpha-lipoic acid and/or acetyl-L-carnitine can reduce oxidant production and improve mitochondrial function in models of aging Furthermore, these compounds reduce blood pressure and improve endothelial function in animal models of hypertension and diabetes The present study was designed to examine the effects of combined alpha-lipoic acid/acetyl-L-carnitine treatment on vascular function and blood pressure in patients with coronary artery disease.
Momzilla, I had to edit your post because it contained outside links, which are not permitted on this forum. Please make sure in the future that if you copy and paste from a study you remove any outside links from it before posting. These can be easily overlooked, so be sure to read it through. thanks.
 

JayCS

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new drug that targets mitochondrial dysfunction called AXA1125. .. long Covid (ME/CFS)."
Ah, Jemima, - the Guardian-reader strikes again... ;-)? Never 'eard'f it, AXAwhat?.... 🧐
So ... they're testing it on 20 people with the fatigue-symptom of long-CoV (56%) and were not hospitalized..., 20 get placebo. Results mid-22. Interesting "mitochondrial metabolism in their muscle tissue ... can be visualised using imaging techniques". I'd actually asked to have my blood ATP tested before and after exertion last year, but the docs said ATP's a fickle thing, can't base anything on its levels at all. So if there are imaging techniques for mitochondrial metabolism, they can't be that evidenced, otherwise: where are they? I'm guessing this is another chain of premises, like Gillis' cytokines and Goebel's autoimmune-idea. But at least Betty Raman (UofOxf) admits that it'll only be a part of the puzzle, that's what I like to hear admitted.
The one pubmed-study on AXA1125 (for non alcoholic fatty liver.disease) is also recent 2021. So not at all much to go on, but let's see.

BTW on an even slighter tangent of "newest research for us" - published Oct 21: "Myofascial therapy and lymph drainage.... may be effective..." "Self-help groups and regionally available networks represent important support possibilities.... Strengthening the self-initiative of patients and promoting the work of self-help groups can help those affected to develop individual coping strategies." "supervised aerobic and resistance-training programs reduce the pain intensity and significantly improve the quality of life and the physical and psychological functioning".
I've actually thought lymph drainage might help, and it did when an osteopath did it on me once or twice, but not reliably, I also tried youtube tutorials for DIY lymph drainage, which didn't help that much. Maybe I should try again, but I think that was when my legs felt heavy and I could hardly walk, not relevant any more (altho walking is a big challenge for me compared to other fibromites).

BTW2: In August, so shortly after Goebel's results were published, Martínez-Lavín asked "Is fibromyalgia (primarily) an autoimmune illness?" And answers "perhaps sort of": "Goebel et al.’s provocative study supports our reiterated proposal of DRG [dorsal root ganglia] as the key neural hub where different fibromyalgia-inducing stressors, including autoimmune illnesses, are converted into neuropathic pain". "More research is needed to define if fibromyalgia is a localized autoimmune illness." And ends nicely "We are transiting from an era of misogynistic disbelief of fibromyalgia structural underpinning to a time of innovative research based on well-structured scientific evidence."
 

JayCS

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Forgot: I'm now going to take resveratrol for my blood fats, but Cort Johnson "comments" it's also on his list for mitochondria....
 

Jemima

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Jemima, - the Guardian-reader
Don't hate me 😂

reiterated proposal of DRG [dorsal root ganglia] as the key neural hub where different fibromyalgia-inducing stressors, including autoimmune illnesses, are converted into neuropathic pain
This sounds juicy, will have to Google...

"We are transiting from an era of misogynistic disbelief of fibromyalgia structural underpinning to a time of innovative research based on well-structured scientific evidence."
🙌 Hallelujah!

I'm now going to take resveratrol for my blood fats, but Cort Johnson "comments" it's also on his list for mitochondria....
Please do report back!

While I think of it, I never told you how I got on with GABA. Intriguingly, it made me agitated - but I suspect that perhaps I'd actually kicked my GABA levels too high between my various sups. It took a little digging, but I found a reference in a book that described agitation and agression as possible sfx of too much :oops: But ultimately, it gave me the handy insight of feeling fairly confident that my GABA levels are probably about right now. Gave the supplements to a friend struggling with anxiety, who seems to be happy with it, so a satisfying experiment. Our brains are so fascinating!
 

JayCS

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GABA. Intriguingly, it made me agitated - but I suspect that perhaps I'd actually kicked my GABA levels too high between my various sups. It took a little digging, but I found a reference in a book that described agitation and agression as possible sfx of too much
I'dve thought so too, altho my sfx when I overdose are different.
Trudy Scott in a similar case suspected a taken benzoe was the problem, but doubt you've done benzoes...
She says "Vitamin C is the antidote when you have adverse effects from an amino acid" - good for me to know too. (The person concerned was however taking 1g/d already; I'm taking none.)
Did you do her amino acid questionnaire? (On her blog & see "Amino Acids 101 for Anxiety and Gut Health by Trudy Scott)"
BTW - I've hardly ever taken GABA alone, I need it with glutamine, which balances it (dopamine).
Even now I need either that or theanine. That way I get all the good fx of the GABA ("2g"?) & of glutamine ("1g"?) & theanine (.2g) too.
Yesterday I took additional GABA in the afternoon, which is helping my pee pain in the evenings, but I procrastinated with a similar amount of glutamine (I was needing to make further 0.3g cps., but researched instead...) and then got 2 focal seizures after 1&2h... That motivated me to plan and prepare each of the 11 batches per day better...🙄
 

Jemima

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Haha, well, I didn't take benzoes when trying GABA, but have an SOS prescription for Alprazolam (xanax). In all honesty, it's my favorite substance, which is exactly why I almost never take it - a "break glass in case of maximum crisis" kind of deal! I imagine that floating through life on a cotton candy xanax cloud would be lovely, but even a fractional dose stops me thinking clearly, and I'd never get anything done... I can see why people have so much trouble with drugs like those :oops: My impression has always been that anything that feels too nice is bound to leave a chemical debt in its wake. Of course, we're all different!

Looking at Trudy Scott's list of symptoms for different amino acid deficiencies, literally every single item on all of them could describe me, although the serotonin list is probably dominant, and the GABA list are things that I feel the mag-gly supplement improved.

Your research is so impressive, but the sensitivity of your symptoms sounds like such a complex thing to live with - I commend you for managing it as well as you do, and keeping optimism in such abundance that you can share it with us lot here too!
 

DebMarPir

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How funny, Jemima, I actually read a study that it helped, so I already tried adding that already Acetyl L-carnitine but as of now still haven't noticed any change in brain fog (or other things). Did it take awhile to help? Was it primarily brain fog it helped or did it also help with other things for you? I have a bottle of gummis and take a couple a day and figured I'd try it awhile in case it helped. In the study, it did take some time to show results, more of a longer haul result.

FYI Xanax does help me, in relaxing me right before sleep. I should have taken a pill last night and I would have unwould to sleep faster and better and instead woke tired again, feeling not rested. I don't always need it, but it's good to have the days or nights I do.
 

Auriel

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Good sleep is really important isn’t it? I know for me it makes a big different to my pain and cognitive function 🧡💜🧡
 
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