BRAIN FOG: What has helped?

[dannybex]

My brain fog has been worsening over the past year, and not sure why...although it almost coincides with getting off of klonopin (because I was becoming anemic) and switching over to a valium taper, but that was a year ago, and things have worsened in just the past 4-5 months.

I find that at times I can hardly read some of the posts here, or read books, or even the news online, etc.,...especially when the articles are long and "FILLEDWITHALOTOFWORDS"...

Plus, I'm stumbling for words that just a year or two ago were easier to find. It takes me for-EVER to post sometimes too...

It's getting really frustrating and a little scary...

Any suggestions of things that have helped you would be greatly appreciated.

Hopefully many of us could benefit from this thread.

Thanks in advance!

d.

 

[jenbooks]

Check out mold, Danny...

Try a mild hyperbaric session--should be a few practitioners in Seattle with chambers, and the sessions are usually quite reasonable.

Fitful sleep can contribute to brain fog. That's a tough one.

 

[caledonia]

100 mg of Co Q 10 per day helps me about 80%.

I went from only barely being able to read the headlines of the newspaper, to being able to read Osler's Web.

Also getting lost while driving in my own neighborhood is a thing of the past.

I don't know if more Co Q 10 or not would be better. I guess I'm happy enough with where I'm at, so I haven't experimented with it.

I get mine from Sam's Club. It works the same as the more expensive stuff and it's a heck of a lot cheaper.

 

[Dreambirdie]

For me, there are HUGE number of things that contribute to brain fog and I need to watch out for all of them:

1) environmental toxins (LONG list)
2) mold
3) viral/bacterial/fungal infections that create their own toxins
4) poor sleep
5) upheavals in emotion (which pollute me with all those icky bio toxins)

What helps is clearing the toxins with my LONG list of supplements, (vit C, N-A-C, red clover tea, chlorophyll to name a few), breathing exercises and baths in Epsom salt. Also acupuncture is helpful.

The exhausted foggy brain is an extension of the exhausted body. Sorry no easy answers.

 

[jenbooks]

PS Danny try sharffen berger chocolate--sugarless if you can stand it. Just melt it in the microwave (careful--20 secs at a time), then put some stevia in if you want. If you want sugar then do one with very little--like 80% chocolate. It has catecholamines which are precursors to neurotransmitters that get your brain humming.

 

[markmc20001]

brain frog

I have quite a bit of brain frog too. I know it is hard to believe, but I do. Mine gets very bad.

Anyways, I do get relief some times! for me any chemicals make it worse; i.e. preservatives, caffine, alcohol, meds, TV, computer, paying bills, etc....so reducing these helps

What makes it better:

keeping a healthy stomach and elimination.

Sleeping and eating well,

Saunas,

Yoga, (hard to get there and difficult to make it thru the class many days, but for me it reconnects my mind and body)

light, Excercse, movement, sunshine

living in the present

Haven't mastered living in the present, but usually do best when I forget about it all and just enjoy whatever I can, no matter how simple it is.

 

[dmholmes]

It's a blessing, my brain fog pretty much ceased to exist after starting the Active B12 protocol. Gives me a fighting chance to research and work on my other symptoms.

 

[markmc20001]

It's a blessing, my brain fog pretty much ceased to exist after starting the Active B12 protocol. Gives me a fighting chance to research and work on my other symptoms.

how long did it take for your brain fog to go away with the b12 protocol mr DMholmes?

 

[dmholmes]

how long did it take for your brain fog to go away with the b12 protocol mr DMholmes?

I didn't keep track unfortunately, wasn't expecting it. Must have been sometime in the first couple of weeks.

 

[spit]

I'm not very helpful here, I'm afraid. Since I'm being checked for a primary sleep disorder, I've gotten a prescription for provigil to help get me through my days, and this has lightened up my personal fogginess considerably (though that's about all it does for me -- sadly, it doesn't dent the rest of my symptoms). Up until I got going on it, I was experimenting with all sorts of life stuff -- my sleep hygiene is flawless, I played with various supplements and excluding things from my diet, I'm on high dose B12 shots already to counteract a known (but not understood) deficiency. Nothing really helped much, though I definitely feel it if I don't sleep on a very regular schedule.

Currently, provigil is only technically approved for narcolepsy, shift-work disorder, and particularly stubborn sleepiness from apnea. I believe some doctors do prescribe it off-label for CFS, but I don't know how insurance deals with that, and it ain't cheap without.

 

[Jody]

Dan,

Any possible food allergies?

 

[Tony]

I was thinking the same as Jody...certainly a possibility!

For me decent sleep is really important and I need drugs to achieve that.

Fructose and maybe gluten contributed to my brain fog as well. The best improvement came with Hydroxy B12. After working up to it slowly, I inject every day, it's great for me.

It's really interesting reading what works for others, like CoQ10 at 100-300mg per day gave me some more 'body energy' for several weeks but nothing for brain power.

 

[Sing]

How to deal with Brain

I wont repeat the other suggestions but add that being in silence helps me. Natural sounds outside like birds or running water or wind are very nice and helpful. But indoor sounds like running the water hard in the sink to get past the metal taste--that sound is fatiguing.

TV is draining, the squack and hectic pace of it. Most music is too exhausting. A little bit of music ever now and then fills my need for it. I can't sing much without getting tired.

All the things that make one tired cause more brain fog. Trying to talk with people who talk fast and convey a lot of details, or who are intense will do it.

Of course good breathing and some outdoor time, a walk if possible, are helpful.

CoQ10 and cortisol help with energy which lifts the brain function up. I drink weak coffee too a few times a day. I feel these things help keep me going and driving more safely.

Resting deeply during the day if needed is important.

Trying to let go of negative thinking and reactions is important; staying open and trusting somehow.

My ESP, psychic ability, kicks in and often helps in a pinch which I would have made a serious error or had a serious lapse. It is the backup system I find myself relying on quite a bit.

Enough for now!!

Cecelia

 

[gracenote]

llifting the fog

This article just came from ProHealth. It is written by Dr. Bruce Campbell, PhD. It basically offers different strategies to help with the fog. Some, maybe most, have already been mentioned.

1. Use lists and other reminders.
2. Do one thing at a time.
3. Avoid over stimulation.
4. Organize and de-clutter.
5. Use routine.
6. Pick your best time of day.
7. Postpone, switch tasks or cancel activities.
8. Do something physical.
9. Take a break.
10. Improve your sleep.
11. Control stress.
12. Eat.
13. Reframe.
14. Plan your response.
15. Do a medication check.

Lifting the Fog: Dealing with Cognitive Problems in Fibromyalgia and ME/CFS

I think what we'd all like is not just to learn how to strategize, but to remove the cognitive problems altogether.

Some things that have helped me (but not enough):

Valcyte
Cholestyramine
treating Candida
and for die-off — coffee enemas

 

[dannybex]

Thanks to all for the great suggestions...

Jenbooks: Mold, chocolate, hyperbaric oxygen...

How about moldy chocolate? Rimshot!

Seriously, mold could very well be an issue, although I've been in the same spooky little apt now for almost 9 years. But it could be an issue. On Monday night, my brother in law flipped my mattress for me, which hadn't been done in years, so perhaps we stirred up some dust mites, cooties, etc.?

Can't tolerate chocolate right now (damn!) as it instantly f...ks up my sinuses. Have always been interested in hyperbaric chambers, but haven't raised the $$ to check them out.

Dreambirdie: Another excellent list...(the CoQ10!) and especially this, which applies at least in my case (will explain at the end)...

"The exhausted foggy brain is an extension of the exhausted body. Sorry no easy answers."

markmc20001: Thanks for your suggestions too. Excellent points about trying to live in the present...as you say, easier said than done, but still need to work on it. Definitely haven't been going to bed early enough, plus been on the computer too much, etc. And definitely, here in Seattle, NOT ENOUGH SUN.

I was wondering about the B-12 protocol. Thanks David for mentioning how it has helped you, and Spit for mentioning it as well. I take it every other day, then forget, then a week goes by...argh.

Jody and Tony: Definitely believe I have some food allergies or delayed food sensitivities. Will mention that at the end too.

Athene: Thanks so much for that comprehensive write up! Your brain is obviously working well (as are others here too of course). So helpful to break it down as you did, so I'll try to reply in kind:

1. Food, definitely think there's a connection. I could hardly walk a year ago, and discovered if I stopped all nightshades (I was eating bell peppers as they had been on sale for a couple of months) that knee joints and even muscle pain improved. And the tinnitus (ringing in my ears) is definitely affected by what I'm eating. It's much better at times, then gets worse, and even pulses (the circulation connection you mention.)

(I can't afford the testing yet, but thanks for recommending the lab. I'm trying to raise $, but haven't linked my blog yet. Kind of wary after the response/attacks Mike Dessin received. I don't need that stress at all, and couldn't handle it.)

I did cut out wheat a year ago or so, and have cut way back on dairy (used to drink 2 glasses of milk a day for leg cramps...couldn't seem to find a cal/mag supp that works) but am now getting calcium, etc., from nettle tea.

Also, I've mentioned this elsewhere, but a woman in our local support group had HUGE improvements from cutting out gluten, and going on that strict 4-day rotation diet. She's in her 60's and cross-country skis during the winter, hikes during the summer. With all the gut problems connected to CFS/ME, it's almost impossible to believe that food sensitivities/leaky guts don't contribute to a lot of our problems.

2. Circulation: After about 8 years of low or normal blood pressure, it's actually gone up the past year or so, and was getting a little too near the official 'high' range, so am working on that w/tocotrienols and will try nattokinase for possible hypercoagulation issues (another test I'd like to get.) I was taking some fish oil, but that would make my tinnitus worse. Took flax oil in Udo's Blend, but stopped that about six weeks ago...after reading a connection between flax and hair loss. My hair had been jumping ship big time (150-200 hairs a day), and although it could've been due to higher arsenic levels, it stopped, or slowed down dramatically (20 hairs a day) after I stopped the flax (after reading a site where at least a hundred other posters had experienced hair loss after being on flax oil). That's another test -- red cell fatty acid profile I'd like to get. Anyway, haven't tested my BP lately, but will do so in the next few weeks.

3. Lighting/emfs: This may be an issue. Been on the 'puter waaay too much lately, and eyes are definitely worn out. As much as I need to do SOME things on it, I need to pace myself and cut back too.

4. Mercury (heavy metals): Had the DDI Hair Elements Test back in July...came up w/elevated mercury and skewed minerals which suggest (according to Cutler) that even though I had my fillings out years ago, but did so waaay before they knew anything about chelation. Did my most recent round about 2+ weeks ago, and increased brain fog is a side effect, so that could be an issue. Will make an effort to take the b12 every day.

Cecelia: Silence, and resting, and all your tips...very important, and definitely apply. (Do I use the word "definitely" enough? Everyone together now..."DEFINITELY".)

Gracenote Thanks for posting the tips from Bruce Campbell, who unfortunately is not taken seriously by the majority of PWC's. I'm surprised a Campbell-bashing thread hasn't been started, similar to the Teitelbaum and other threads. That just slipped out. Anyway, all good suggestions, and interesting you should mention Cholestryramine. I've been taking activated charcoal at times (right before bed)...and it seems to help with the tinnitus, and 'sore mornings'...as it helps to adsorb toxins.



Anyway, although overall my fog has been getting worse the past year, here are the things that I think have contributed to making it so bad the past couple of days (which ties in with what you have all said):

I reluctantly joined Facebook on Friday: Difficult to figure out how to set it up, how/where to post photos, frustrating, draining...but joined, so I could link to my blog, and stay in touch w/friends/family. But overall, have spent way too much time in front of my computer -- thus the eye/brain strain/drain.

Birthday was on Sunday: Friends took me out, had some food that I think I tolerated okay, but then had a few bites of yummy deep fried ice cream. And although I was so grateful to get together with a few friends...I crashed big time after that. But then the next day, my family had me up for a birthday dinner, which was very good, and very kind of them, but then again, I'm now pretty certain that a few of the foods I ate may have resulted in a negative reaction later. My sister made this yummy wild rice. Out of a box. In hindsight, it tasted too yummy. My guess...MSG was the 2nd ingredient, after the rice. Plus the gravy she "made" probably also contained not only MSG, but wheat to thicken it, and the other frankenfood chemicals that go into similar products. I don't think I've had MSG for several years...

She was very sweet to track down a gluten-free bakery, and got me two little gluten-free pies, which was great, but perhaps the sugar was too much for me. I had 3/4 of the 2nd pie on Tuesday night...then yesterday morning...aauughhhh...total collapse.

Also, was taking great digestive enzymes (and have been for years), but ran out about 2 weeks ago. Hope to get some more tonight, as they definitely help with digestion, which helps overall 'energy', etc.

So to sum it up:

Too much stress.
Too much time on the computer.
Wrong food choices, especially the MSG surprises.
Circulation issues, etc., from all the stress, not enough b12 and other b's, etc.
Poor digestion/gut issues.
And...NOT. ENOUGH. REST.

Thanks so much for all your suggestions. Keep 'em coming...I think this thread will help a lot of PWC's...

Best regards,

Dan

zzzzzzzz........klunk.

 

[kolowesi]

brain fog suggestions

Great thread! Trying not to be jealous of you guys as my IQ has dropped a lot recently.

Danny, you mentioned skewed DD hair analysis. I just got that done, and 9 of my minerals were low or sub-optimal. The doctor said, "Low stomach acid!"

This has been a eureka, as I developed a serious bowel overgrowth this summer and tested strongly positive on the H2S metabolite test. If I remember, H2S causes cognitive problems.

I have gradually added Pepsin HCL to my meals and supplements and am taking slippery elm and PepZiGl to heal the stomach lining.

The H2S symptoms are improving, but my brain is still not back. This is all connected to diet because the bacterial overgrowth -> H2S -> poison in the brain.

I ate some carbs over Thanksgiving and it was a big mistake. According to an excellent post by Athene (thank you Athene), Dr de Meirleir makes lots of diet suggestions. Mixing carbs and protein feeds the bad guys.

My doctor explained that acidophilus means "acid-loving," and that all the probiotics I was taking were not sticking around because of lack of acid. (I also had low protein on a blood test, so this low stomach acid thing has a lot of repercussions).

Not having enough minerals sounds like another issue we share. I used to get nauseated when I took my minerals, but with the Pepsin HCL, no problem.

Sorry this is not more organized. I hope you feel better soon!

Kelly

 

[jenbooks]

I agree with you Kelly--having just eaten a baked potato. Carbs are bad for us as we have dysbiosis and yeast. Danny!s reactions prove it. But carbs are comforting and boost mood and low carb diets cause irritability. Arg.

I should add that fitful sleep is a big one. In winter here I sleep very poorly because the heat pipes make periodic loud cracking sounds. I wake and don't fall back easily. For the last week I've slept 4-6 hours a night. And at some point it gets so I feel too wired/tired to nap. And I feel much worse and my memory worsens.

I recently read that when they tested spouses of snorers the spouses were waking multiple times a night tho they didn't remember. They were chronically sleep deprived. When their mates' snoring was properly treated their own sleep and energy improved dramatically. The thing is that they didn't even realize they were sleeping so poorly. I think many of us sleep poorly. I am very sensitive to noise.

 

[Freddd]

My brain fog has been worsening over the past year, and not sure why...although it almost coincides with getting off of klonopin (because I was becoming anemic) and switching over to a valium taper, but that was a year ago, and things have worsened in just the past 4-5 months.

I find that at times I can hardly read some of the posts here, or read books, or even the news online, etc.,...especially when the articles are long and "FILLEDWITHALOTOFWORDS"...

Plus, I'm stumbling for words that just a year or two ago were easier to find. It takes me for-EVER to post sometimes too...

It's getting really frustrating and a little scary...

Any suggestions of things that have helped you would be greatly appreciated.

Hopefully many of us could benefit from this thread.

Thanks in advance!

d.

Hi Danny,

The things I have found helped with brainfog I'm presenting in the order tried.

1. Methylb12 1-20mg sublingually daily
2. Adenosylb12 3mg daily to weekly
3. Zinc - increase to 65mg from 15mg
4. SAM-e 200-400mg/day
5. L-carnitine fumarate - 125-500mg/day
6. methylb12 50mg single dose sublingual or 7.5mg SC injection daily or more frequently
7. Adenosylb12 51mg single dose or 18mg single dose in conjuntion with 7.5mg SC mb12 injection weekly

Each of these things progressively relieved brainfog. As far as I know I have none remaining. Prior to starting mb12 6.5 years ago it was continuous and thick for 16 years.

 

[Sing]

Aricept worth a try

I wanted to add that I have found Aricept, the drug for dementia, helpful for cognitive functioning. A half dose is best for me, 5mg. at bedtime. It started me recalling dreams, which I had lost touch with (brain fog in my sleep!). And it helps improve "executive functioning" during the day.

I wouldn't say that Aricept replaces the need to take care of oneself in the other ways all of you have brought up. But after you've done your best to get good sleep, to rest enough during the day, to follow a clean low carb diet, to simplify and organize, to stretch and move as much as you can, without going backwards, to live in a clean environment, and so forth, I think the Aricept can be worth a try.

What it does is to help keep the acetylcholine in the brain longer, to delay its breakdown, and this furthers nerve transmission. However, it isn't good to take--you can always stop without any difficulty--if you are having an allergic reaction as with black flies or poison ivy. The acetylcholine will exacerbate the allergic response.

Cecelia

 

[Nielk]

brain fog

To add to all the other helpful tips, the thing that helps my brainfog the most is neurofeedback. Neurofeedback is like biofeedback but they use eeg of the brain
and you look at a computer monitor with different games and with your brain you control the game's success. It's like exercise for the brain. After a few sessions you can start feeling better. It also helps with sleep and depression.

The problem is that you have to feel well enough to go to the practitioner. Secondly, it's not covered by insurance (what is?) so it be costly.

If you want to try it, you should look for a practitioner who has experience dealing with cfs patients. They use this mainly for ADD & ADHD children. They also use it a lot for addictions.

Has anyone else on this forum have experience with this?

Nielk