Mental health: Is ME/CFS Brain Fog consistent with an Attention Deficit Disorder?

[Judee]

I also think 'ADHD' is a bit of an arbitrary designation. As we're familiar, there's no biomarkers, no objective tests that I'm aware of.

That doctor has some bad reviews too. Not that I can go to one of his clinics nor would I want to as he doesn't seem to mention ME/CFS at all so maybe doesn't believe in it or thinks is it just ADD by another name.

However, he does do Spect brain tests. I don't have his books but I think one or two reviews I read said by the Spect testing he can actually see what kind of ADHD a person has so at least he's come up with some kind of metric. From what I'm reading it sounds like his offices do two of them--one with little brain activity and then after filling out a long questionaire. So from what I can tell a before and after.

Though I will say from some of the hypoperfusion he talks about, it reminds me of the brain scans that have been mentioned and used in research studies on us.

If I could do something to help with the hypoperfusion issues (which I think I may have with the POTS) maybe I could at least think better. ??

 

[lenora]

My daughter is now 52 yrs. of age, has a highly successful career and it's her niche in the world. I'm so glad, b/c there were many times when I did wonder.

When she was younger, I knew something was different, but what. Doctor after doctor had no explanation and then I read about ADHD. Like ME, etc., if there isn't a treatment then it doesn't exist.

She was never on medication b/c it didn't exist at the time. Finally, boys were the victims of it, then girls also. By then she had ruined her school life and we transferred her to a private school. She flourished....it took me doing her daily work with her again at home, the teacher wouldn't even put homework on the blackboard (now whiteboards), but the private schools didn't let anything pass. It worked and she even went on to an upscale university. I swear that getting her through school was the biggest challenge of my life. Our relationship suffered.....if off/on, but at least now it's recognized and parents know what they're up against.

But the time, patience and overall frustration was hard on both of us. It doesn't matter what their IQ is, if there's some "glitch" in the brain (whatever the cause), then there are problems.

Personally, I think it can happen at any point in life (cause may be different), but it's a tough one. Yours, L.

 

[Remi]

Why not giving it a try? Just to see if ADHD drugs does something for you!

I didn't get the ADHD diagnosis from an authorized specialist.... But I got a visit with one of the best specialist in my country for Narcolepsy/hypersomnia (his center also work with specialists for ADHD).

I already saw him 8 years ago for my sleepiness/brain fog/drowziness/inattention problem.

At that time I had evaluation for sleep disorder (I had a sleep study), and he concluded that I didn't have any sleep disorder.

At our last meeting (8 years later), I explained that my symptoms got worse after a flu vaccine, and that Ritaline helps me a lot for 1.5 years now.

I also explained that another doctor (one of his ancient student!) recently diagnosed me with a chronic iron deficiency (this is a risk factor for ADHD).

He seemed to be very confident that according to my sleep study (normal) and my attention problems (that I suppose I have), the improvement with ritaline means that

- I likely need it
- My problem is likely to be ADHD (attention deficit subtype).

He agreed to give me a presciption to keep this treatment that helps me without further evaluation.
I suppose my age (55 years), my long life suffering history without any effective help, and my positive experience with the drug made his mind.

(Also I already tried to get an appointment with his collegue (ADHD specialist in the same center) without any success because he doesn't take new patient!)

His team published numerous papers, for example:

Patti, do you have POTS? Does Ritalin give adrenaline surges? I used to drink black tea (had ME since early childhood, so while already ill) and while it made me too tense, it also helped my concentration and dexterity. Due to getting POTS, and ME worsening, I cannot take cafeinated tea anymore. I never tolerated coffee, because of the sudden release vs slow release from tea. But really miss the symptom relief from it.

I never had good "calm and steady" concentration, but have some laser focus, likely from autism. Since ME worsening, I have ADD type concentration. Thoughts all over the place, failing short term memory, roomba-type action: I go everywhere and do a bit here and there, but nothing substantial.

I'm taking quetiapine to sleep, and also to not get too active. Without it (only on 50 mg sertraline, which also calms my nervous system), I get up too early, am too active and then crash. And with POTS, I'm very sensitive to adrenaline, really cannot stop once on a high, then crash deeply