Brain Fog Theories?

[HopeSprings]

This is a follow up to my "losing things" post. Just curious if anyone has a theory on WHY we have this problem? Poor blood flow to the brain is the only one I've heard so far and is that even proven? Why are we so disoriented, confused, can't find words, can't process information, have memory loss? And why aren't Dr's more alarmed that previously healthy, intelligent (mostly young) people have such severe cognitive and perceptual deficits?? Sometimes it's so bad I feel like my brain is under attack.

[misstraci]

The only one I normally think of is the not enough blood flow. It could possibly be some chemicals out of whack or something. I'm not sure but I'd also like to know why. Not to use the word "retarded" in a deragatory way at all just descriptive. I often feel as though I am retarded. I feel "off", I can't think straight, I can't remember, I'm sidetracked, I don't feel comfortable in my mind set and I feel out of control.

[corina]

i think poor blood flow too. i also think that what's lost stays lost. i had cognitive testing some years ago and although a lot of things were good there were some very specific things that were not good at all. as the prof said: this is what would suit an 80 year old. unforunately i was 40 at the time of course i can't remember which specific things were so bad

since i'm on octreotide i'm doing much better over all except for my bad memory. that's what makes me think that what's lost cannot be gained anymore. over the years i've lost car keys, credit cards, my son's birthday present, birth presents, books, you name it. i got lost a few times (that was really scary) and had more events which of course i can't remember (which is a very good thing!). i learned lots of tricks to keep things in mind, write down about EVERYTHING and learned to use just one (family)agenda (as i forgot where i'd written things down). i take a note when i go shopping and then forget i have a note or i even loose the note. i've been offered more cognitive testing but i'd rather they'd find out the why so that in the end we would know and could find a way to fix it.

[GingerA]

The only thing I have heard is that there is inadequate blood flow to the brain but I wonder if blood sugar levels have a factor in the fog as well because so many of us have trouble regulating our blood sugar.

[sugartwin]

I assume it is poor blood flow. My brain fog is worst when I'm standing, or when I've been sitting a long time or when I've over-exerted myself. Likewise, I can recover by lying down. It has gotten especially bad as of late with episodes of being unable to understand speech or writing or not recognizing my surroundings.

[HopeSprings]

So we'd be in great shape if our brains were in our feet. I would think this whole blood flow thing could be easily documented. I asked my recent Neuro about doing a transcranial doppler standing and he said this is mostly done in research settings (yeah i know!) and the results haven't shown that our brain bloodflow is worse than "normal" people. Not sure he's correct about that. Just seems like with this level of impairment, SOMETHING should be visible on a darn scan!

[sue1234]

When I had my last TTT, they put some sensors on my forehead(first time I ever had that done). They mentioned something about it checking my blood flow, but it was taped to my forehead! I have had the transcranial doppler thing done a different time, but I was laying down for that. The thing that was taped to my forehead was hooked up to a laptop that the doctor had. It seemed like they had trouble keeping it taped on--I didn't really pay much attention to it. When I got my report, there was nothing on the report that even talked about blood flow to the head. I have no clue.

Would like to add, this was at a teaching hospital, but I didn't get any data out of it.

[Elfie]

I was told that the severe brain fog that is more apparent when sitting or standing or symptomatic is caused by insufficient oxygen to the brain in most people-- particularly when they have times when they seem to have normal functioning. My neurologist wants to check me, but she would have to send me back east to one of the fancy ortho labs to do that, so we are waiting to see if I can get in for testing.

[momdi]

When Mike was young and they thought he had a seizure disorder (rather than POTS), they did brain scans - a PET and SPECT - which show the glucose activity of the brain. It was abnormally low in one area, which at the time, they thought indicated the area of the "seizures". We later were told that POTS creates a sort of physiological shunt in the brain that does actually diminish the brain flow. And we were told that's the cause of the brain fogs.

[icesktr189]

For me, it is definently blood flow.

When I was able to work and drive about a year and a half ago, I had NO brain fog issues. I got the very random one every six months if I stayed up way too late, but other than that I was fine. My bp was a lot better and I had very little dizziness.

Now that my POTS is out of control, I have it majority of the time. I can actually tell I have very limited blood flow because everything seems "dark", like the curtins are closed in the room all the time, even though there is light in the room. Drvies me crazy

[McBlonde]

I am so glad you asked that question. I would love to know the answer! I loved books. I loved reading. Now I can't read a book. It's so frustrating on top of everything else. If I could read, it would at least be something left that I enjoyed doing!

[icesktr189]

I have tried florinef, midodrine, salt loading, pretty much all them and the one thing that got rid of my brain fog completely was cigg smoking. Nicotine really agreed with me!

[HopeSprings]

Now this is interesting! "Physiological shunt" makes perfect sense - it feels this way. Did the Dr. give any hint on what to do about it? Ok, I gotta go google glucose activity/brain.

"When Mike was young and they thought he had a seizure disorder (rather than POTS), they did brain scans - a PET and SPECT - which show the glucose activity of the brain. It was abnormally low in one area, which at the time, they thought indicated the area of the "seizures". We later were told that POTS creates a sort of physiological shunt in the brain that does actually diminish the brain flow. And we were told that's the cause of the brain fogs."

[sue1234]

To be honest, when I read that when Mike was little, they linked his seizures to areas in the brain known for blood sugar control, I think this is more likely the issue. We have to remember that POTS is a "reaction" to whatever is going on in the body. ALOT of us have glucose problems, and I'm beginning to wonder what odd thing is causing it, why are we similar but not like other people with glucose control problems. POTS wouldn't cause low blood sugar, but low blood sugar could cause POTS. I wish there were some doctors out there that would seriously look into the relation of blood sugar to POTS.

[Dizzysillyak]

My brain fog is mostly gone compared to what it was back in 2005. Most of it was from food intolerances, candida and hypoglycemia.

now I only notice the fog I get from my oi if I.ve been upright for too long. Considering that my bp drops after 3 minutes of being upright, I have my limits .. Lol

Dr peckerman explains this. The link to his article is in the thread I just bumped on cardiac problems in cfs. Or you can google peckerman cfs cardiac ..

Also tho, I.ve recently started experimenting with dmae and it seems to have improved my processing speed. It took about 3 weeks for me to get the full effects.

Tc .. D

[momdi]

From the Cleveland Clinic...

"A PET scan can measure such vital functions as blood flow, oxygen use, and glucose metabolism, which helps doctors identify abnormal from normal functioning organs and tissues. The scan can also be used to evaluate the effectiveness of a patient’s treatment plan, allowing the course of care to be adjusted if necessary.

Currently, PET scans are most commonly used to detect cancer, heart problems (such as coronary artery disease and damage to the heart following a heart attack), brain disorders (including brain tumors, memory disorders, seizures) and other central nervous system disorders."

Mike's PET (and SPECT) were read as abnormal, and since he never really had seizures, presumably this was POTS related. BTW, it was Dr. Low at Mayo who gave the connection - said it was no surprise to him at all. Explains a lot, IMO.

[HopeSprings]

Dianne - do you mind me asking about your son? Symptoms started at age 8 and he is now 29 - has he gotten better over time or found some treatment that helps? My son is almost 8 - it makes me sad to think about a child having to deal with this. This must have been difficult for you. Do you have idea what caused it or have any theories? I think as a parent observing, it might be easier to make links, see progressions, time lines etc. more so than when trying to observe oneself.

[momdi]

Hi Naomi,

Sorry to say, worse, much worse. But I think that has more to do with the type of pots than anything else. He has the hyperadrenergic form and, looking back, has probably had it all or most of his life. It's hard, that's for sure. You are fortunate in that doctors now have a clue. Mike was misdiagnosed with cardiac arrhythmias (though that wasn't too far off), and later, seizure disorders. It was only when he was 16 that I came across some publications by Dr. Grubb in Toledo and thought pots might be a possibility. Confirmed by a tilt table test at Childrens Hosp in Chicago. Though all they offered at that time was Florinef. It's amazing what a difference a decade makes. At least people now have a clue.

Best of luck to you. You can pm me anytime.

Dianne

[green]

>And why aren't Dr's more alarmed that previously healthy, intelligent (mostly young) people have such severe cognitive and perceptual deficits?? Sometimes it's so bad I feel like my brain is under attack.

This baffled me too. Cognitive deficits were my first complaint when I was first misdiagnosed with anxiety over a decade ago.

My best explanation is that cognitive deficit complaints are non-specific - they don't help the doctor diagnose what's wrong, so the doctor has trouble even acknowledging that they exist. I can forgive them - in order to diagnose a disease, they have to be able to shift out what's relevant from what's not, so they have to make fast decisions about what to ignore and what to pay attention to.

My cognitive problems have gotten better with time, but I spent years of my life believing i had undiagnosed brain damage, and feeling very alone. I am angry whenever I think about how awful it is to have no one acknowledge it. At the same time, I believe that I was slow to shift away from fruitlessly seeking validation in favor of finding things that helped me feel better. I got too focused on cognition, and forgot that many problems with the mind are ultimately caused by problems with the body, improving bodily health is your best general bet for improving the mind.

[Guest letitbe]

no theory, right? No oxygen/blood in brain. All our rhythmns are off. Head to toes to organs beating.

I get perceptual changes so bad. that part got worse in the laste 80's after a bad flu. Like looking at everything through a peep hole in a door while hearing sounds like and echo.

All that goes with that and then some. I get it now lying down and even being overstimulated by the phone. Trying not to even use it for at least 2 hours after waking up. Think if someone climbing a mt. and running out or air. everything gets weird.

i really hate this illness more and more and more

Edited September 27, 2011 by corina

[momdi]

When Mike was younger, he would say his "brain hurts". Good description?

[HopeSprings]

When Mike was younger, he would say his "brain hurts". Good description?

YES.