What's Up With The Brain?

[sue1234]

In my past normal life, I would wake up and be all chirpy. I remember my college roommate asking how in the world can I wake up and just be so talkative and happy?? I used to drink coffee and it would add a little boost to my step. Anyway, in the last 2 years or so, I wake and go straight to my living room chair(where I spend most of my day). First thing in the morning I drink iced tea, but I never get that mental boost I used to get for the previous 50 years. If it happens to be too much caffeine for me for that particular day, I will feel my heart beat a little faster and a little stronger, but I get zero mental boost. Anyone else have this? Why is the brain not responding to the caffeine boost? Is there a problem with receptors or something? (I am way too sleep-deprived for my brain to even think. BTW, on nights I do sleep, I still constantly have this "unawakened" brain).

[little_blue_jay]

Don't know about the caffeine not helping but I know the feeling you describe about "unawakened brain"! I have days where I've told my co-workers that it feels like "my brain just can't wake up" and it'll take till late afternoon to wake up as much as I'm going to that day. Whether I'm having a flare or not my sleep just isn't refreshing. I don't dare drink coffee though, I've reacted badly to coffee (tea I can handle).

[sue1234]

Yea, I'm the same. IF I wake up somewhat, it will be late afternoon/early evening, also. But I definitely always still feel that "unawakened" feeling.

[gjensen]

I attribute it to cerebral perfusion.

I reliably get vasospasms first thing in the morning. As soon as I wake up. I am taking a CCB for it, and now that I am on it, what you describe is worse.

[sue1234]

Jensen, so are you going to continue the CCB? Does it help in other,areas?

[Chaos]

There was an EEG study out of Stanford University that was released this spring which showed that in the ME/CFS population there was a greater than 50% reduction in peak alpha waves over the whole frontal cortex of the brain. These are the waves that regulate your sleep/wake states so with that much of a reduction it would indicate that these patients aren't as "awake" as normal people.

The study also found that ME/CFS patients had increased delta waves when awake. Usually you only see delta waves in sleep.

So that's two strikes against these patients for their brains being alert and working normally when awake.

Again, since there is so much crossover between the two populations (POTS and ME/CFS), and some docs are now saying they think it's really just a continuum of the same thing, this may apply to us in varying degrees.

There was another study also released at Stanford which showed a direct correlation between Leptin levels and fatigue in ME/CFS patients. Leptin has been known for it's role in weight control but it's a cytokine that has many roles in the immune system. It can apparently interact with microglia in the brain in such a way that it makes them much more prone to causing inflammation inappropriately. Another study, from Japan, found that there is inflammation in the brain in ME/CFS patients that correlated with their subjective complaints of cognitive impairments and this same study showed that microglia were involved with that inflammation.

A 600 person study done at Harvard was able to clearly show differences in EEG patterns between ME/CFS patients, controls, depressed patients and patients with general fatigue.

So it seems like these all show that there is clearly something up with the brain in this patient population- which many of us fall into.

Now they just need to figure out what to do about it and how to treat it.

[gjensen]

Jensen, so are you going to continue the CCB? Does it help in other,areas?

I have to. I do not have a choice.

I tolerate the drug pretty good, and at low doses, I find it helpful. It is going up on the dosage trying to control the vasospasms where I start having trouble.

[gjensen]

When I am actually exercising, I feel improvement.

[sue1234]

Gjenson, good to know you are getting some benefit.

Chaos, oh my! I'm sure I also have a CFS component directly related to the POTS, so all that research could definitely apply. I agree, they need to find some pertinent results that could help. Reading that the various sleep waves are active in the daytime would make sense to explain the "unwakefulness" that I feel.

I do know that when my thyroid is not at its adequate level, my mind is fatigued. BUT, when I do get it at the right level, sometimes even on the hyperthyroid level, I still have that fatigued brain to some degree that affects my daily cognitive abilities.

Please let me know if you find any new research with some helpful results on this matter(the studies that you referenced). I don't want to miss something new.

[looneymom]

You know this would explain why some patients do better with brain activities later in the day. I would think some of the brain neurotransmittes would play into this also. This last year during school time, it took Tyler awhile before he coud just get focused and started on school work. His school year before was not nearly as bad.

Please post that research if possible. I would really like to read it.

[Chaos]

Rachel-

Harvard study

http://www.ncbi.nlm.nih.gov/pubmed/21722376

Japanese Study (This has gotten a lot of attention around the world, even though it was small, it apparently was considered to be really well done. A larger study to confirm the findings is underway I believe.)

http://www.ncbi.nlm.nih.gov/pubmed/24665088

Stanford study regarding Leptin levels and fatigue

http://www.translational-medicine.com/content/11/1/93

There was a video presentation I watched by Younger that explained the role of Leptin in the body and how it could cause inflammation in the brain. Can't find it right now, but I'll try to remember where I saw it and post it later. In it he described a whole list of things that could potentially be used to address the leptin levels although he said none of them should be used for treatment at this time. But it included chinese herbs as well as meds already available on the market so if they could confirm these findings, there should be some treatments available in the not toooooo distant future for at least this subgroup of patients.

[Chaos]

Remembered! Always a feeling of success in a day when you can do that.

Here is a link to all the videos from the Stanford University Symposium on ME/CFS that they held in March. There is a lot of interesting info in several of them if you are interested in spending some time watching them. Jarred Younger's presentation on Leptin and fatigue and brain inflammation is on video 2 I believe.

http://mecfs.stanford.edu/2014SymposiumVideo.html

The Zinn's research is also on these videos. They were the ones that documented the EEG changes across the whole frontal cortex of the brain and the delta waves that were occurring during waking. I don't have their actual paper available to me yet.

When you go to the site to view the videos, Stanford has a little donation box there to help fund their research if you feel that the information is helpful but it's totally optional. Don't want to have it deter anyone from watching the videos who might find the information helpful.

Edited July 24, 2014 by Chaos

[looneymom]

Thanks Chaos

[gjensen]

I do better later in the day, but that does not mean that I do well.

[Goschi]

Sorry, very foggy today - the research findings do suggest a cause why we often feel better in cognitive way in the evening? Couldn't find an explanation for that in the article but, I am not good with reading/understanding today ...