ADHD may skew towards slower onset of ME/CFS - my Reddit polls comparison

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This is a very hard to answer question for some of us.

I had the decades long mild something eppstein Barr- and then I experienced a worsening that could be considered somewhat sudden over a period of several weeks. No clue how to answer simple questions like these.
 

ZeroGravitas

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I’m def an outlier if thats the case.
In which direction?

I was surprised how evenly people answered across the contrasting time periods. I thought there'd be way more "sudden" and far fewer "years". Are there other polls/surveys that have charted this aspect in an easy to comprehend manner?

No clue how to answer simple questions like these.
I know, right? My default answer to so much is "I don't fit your question". Maybe years long onset and sudden onset just shouldn't have been mutually exclusive answers, here. But Reddit polls are simple like that, so.

children who get adhd are more likely to have autoimmune issues later in life
I can certainly believe that. A fair few anecdotes of that kind of thing in families, posted in comment/tweet responses.

And it seems like there's a link with histamine intolerance/MCAS causing ASD (and ADHD) symptoms. e.g. from RoryReckons blog, via his Twitter:
 
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I'm from an older generation. ADHD must have existed, but not like it does now. Which makes you wonder right there. Was it the food coloring in the Fruit Loops?

meanwhile- this illness can make one ADHD. My ability to concentrate for a long period of time about something important, is impaired by the ME.

So this topic surprised me, I wasn't aware of the trend.

Perhaps ADHd-like behavior is a symptom of ME?

When something follows you around for decades, its just really hard to pin down. Childhood too. We don't understand whats going on, ones' parents failed to keep tabs on what was up, nobody can explain it, doctors who don't run tests, etc.

A sudden onset seems really strange to me. I'd say this is a sneaky thing that creeps in with stealth and takes tiny bites out of your life, in increments often unnoticed until its a full on mess.
 
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I can certainly believe that. A fair few anecdotes of that kind of thing in families, posted in comment/tweet responses.
there is this other related theory - regarding Highly Sensitive Persons...about 18% of the population. Thats associated with being more affected by external stimuli. Its associated with ADHD also.

And the autoimmune sensitivities....

Let me be clear I do not consider HSP to be a "disorder".

Personally I think there is alot to this and find it fascinating and hope they learn more.

It makes sense evolutionarily, to also have some of "us" around.

Here is a random article discussing it.

https://www.additudemag.com/hypersensitivity-disorder-with-adhd/
 

vision blue

What big eyes...
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meanwhile- this illness can make one ADHD. My ability to concentrate for a long period of time about something important, is impaired by the ME.

.
I was wondering about this. I had razor sharp attention abilities before this illness, and now in stage 2 of CFS (just meaning mine has changed) I know think I have ADD - quite a change for me. I don't think i have ADHD but not sure. My body can sit still, must my mind cannot. But was going to ask if one can have adult onset ADD - or whether they just call it someting else when you get older- like dementia... or Mild Cognitive Dysfunction (that's a thing for those who don't know)

i like your froot loop comment. I think back in the old days they called it just "hyperactive". EVeryon now and then theredy be a kid just bouncing off walls, never sitting for a second, driviing teachers and mothers to madness.
 
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EVeryon now and then theredy be a kid just bouncing off walls, never sitting for a second, driviing teachers and mothers to madness.
There just was very little of that, when I grew up in the classic 1950s America.

IF anything, I was somewhat famous for disrupting classes.

I was very famous for asking questions.
 

ZeroGravitas

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this illness can make one ADHD.
if one can have adult onset ADD
For adult diagnosis, you'd typically still need to identify several symptoms that were present in childhood, before the age of 12. For me, this was done by digging out all my old school report cards, which gave little indicators, and the expert private psychiatrist talking to my Mum to corroborate, too.

Criteria also state that symptoms should not be better explained by another psychotic or mental health disorder you are diagnosed with. So ME/CFS might cover that..? One commenter said their recent ADHD diagnosis was dropped after an ASD (autism spectrum) diagnosis.

There's a good breakdown of the DSM-5 criteria for ADHD here, with a screening questionnaire you could use yourself to give an indicator: https://www.qandadhd.com/diagnostic-criteria

Of the two sub-types, inattentive verses hyperactive/impulsive (there's combined type too), I feel like maybe it's a fairly superficial difference in brain energy levels. How wired you naturally are. I feel like even mild hypothyroid might cover a lot of that that (or variation in the serotonin system, etc).

I was rarely ever over-energetic to the point of being noticeably problematic. More shy, retiring, tired, depressed in teens. I identified a fair bit with r/SCT (Sluggish Cognitive Tempo), before I got my ADHD-PI diagnosis (age 30). It's a kind of foggy brain condition, though without all the PEM and other stuff that might come with ME/CFS. Not hard to imagine there's some latent neuro-inflamation there, or something. A case of ME in waiting, maybe. I certainly slid into it without any turning points around infections, events or trauma.
 
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pattismith

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For adult diagnosis, you'd typically still need to identify several symptoms that were present in childhood, before the age of 12. For me, this was done by digging out all my old school report cards, which gave little indicators, and the expert private psychiatrist talking to my Mum to corroborate, too.

Criteria also state that symptoms should not be better explained by another psychotic or mental health disorder you are diagnosed with. So ME/CFS might cover that..? One commenter said their recent ADHD diagnosis was dropped after an ASD (autism spectrum) diagnosis.

There's a good breakdown of the DSM-5 criteria for ADHD here, with a screening questionnaire you could use yourself to give an indicator: https://www.qandadhd.com/diagnostic-criteria

Of the two sub-types, inattentive verses hyperactive/impulsive (there's combined type too), I feel like maybe it's a fairly superficial difference in brain energy levels. How wired you naturally are. I feel like even mild hypothyroid might cover a lot of that that (or variation in the serotonin system, etc).

I was rarely ever over-energetic to the point of being noticeably problematic. More shy, retiring, tired, depressed in teens. I identified a fair bit with r/SCT (Sluggish Cognitive Tempo), before I got my ADHD-PI diagnosis (age 30). It's a kind of foggy brain condition, though without all the PEM and other stuff that might come with ME/CFS. Not hard to imagine there's some latent neuro-inflamation there, or something. A case of ME in waiting, maybe. I certainly slid into it without any turning points around infections, events or trauma.
I am a 54 years woman and ADHD diagnosis didn't exist when I was a child.

However, I think I had very early ADD.

My ME/CFS + Fibromyalgia came later and had progressive onset...

I also have chronic low iron stores, and later in life Restless Legs...

So I agree with most of what you wrote!

However, now that I'm getting older, my psychiatrist is not keen doing an ADD diagnosis on me because it overlaps too much with the depression diagnosis.
I also had several depressive bouts in my life, so it doesn't help.

The consequence is that I don't have stimulant prescription, even though they can help me.

He sticks to prescribe me all the usual anti-depressive drugs that make me bad or sleepy.

He is a young doc, so I need to let him play a bit with my brain and to be patient...
 

bensmith

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It was like a light switch for me. A few months earlier i was working 50 hours a week doing physical labor, got covid, and even before i started showing covid symptoms, i started showing long covid ones cfs ones.

i might have been asymptotic, and started showing long covid issues shortly after.
 

ZeroGravitas

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I also have chronic low iron stores, and later in life Restless Legs...
I'm interested in iron, currently, having had a private (Thriva) test that showed it was low, despite optimal normal ferritin.

It's hard to know how long that's been an issue for, given that it won't have shown up on any previous NHS tests, given it's not been severe enough to show anaemia markers. I'm guessing it may have started kicking in 9 years back, when I started supplementing calcium (magnesium, zinc, etc), to compensate for excluding diary, etc. Iron apparently competes with calcium for absorption. I moved to a multi-mineral that happened to not have iron in too, as the full version (from Dr Myhill's shop) tasted far too bitter, with so much potassium chloride.

Anyway, have you investigated potentially having histamine intolerance (or MCAS)? That was a surprise find for me, and might tie some of my things together, seeing other with only ADHD/ASD getting symptom relief via exclusion.
 

pattismith

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Anyway, have you investigated potentially having histamine intolerance (or MCAS)? That was a surprise find for me, and might tie some of my things together, seeing other with only ADHD/ASD getting symptom relief via exclusion.
I don't think I have too much Histamine, I think my brain is lacking histamine...

I had some improvement with Betahistine, a brain histaminergic drug I tested.

I had very bad sleepiness with Mirtazapine (whatever the dosage I tried), an antidepressive drug which is also an antihistamine crossing the BBB.

I think the attention deficit is related to brain histaminergic alteration, both in ADHD, Narcolepsy and maybe in some ME/CFS patients.

Methylphenidate and atomoxetine increase histamine release in rat prefrontal cortex
Weldon E Horner 1, David E Johnson, Anne W Schmidt, Hans Rollema

Abstract
Using microdialysis in rat prefrontal cortex, we found that 1 mg/kg of the stimulant methylphenidate and the non-stimulant atomoxetine, two widely used treatments for Attention Deficit/Hyperactivity Disorder (ADHD), produce robust increases in the extracellular levels of histamine, which plays a key role in attention, learning and memory.
While the clinical response to ADHD drugs is typically attributed to modulation of norepinephrine and dopamine, this finding suggests enhanced histamine release may contribute to their efficacy as ADHD treatments.
Increased attention-deficit/hyperactivity symptoms in atopic dermatitis are associated with history of antihistamine use
J Schmitt 1 2, A Buske-Kirschbaum 3, F Tesch 1, K Trikojat 3, V Stephan 1, S Abraham 2 4, A Bauer 2 4, K Nemat 2, F Plessow 5 6, V Roessner 7
Affiliations expand
Abstract

Background: Epidemiologic evidence indicates a relevant association between atopic dermatitis (AD) and attention-deficit/hyperactivity disorder (ADHD). Underlying mechanisms and ways to best identify subgroups of AD patients at risk for ADHD are poorly understood.

Results: Compared to HC (n = 47), children with AD-only (n = 42), ADHD-only (n = 34) and comorbid AD + ADHD (n = 31) had significantly increased behavioural problems and decreased quality of life.

Children with AD-only had significantly higher levels of ADHD symptoms than HC.

In children with AD-only, previous use of antihistamines was significantly associated with increased ADHD symptoms (OR 1.88; 95% CI 1.04-3.39). Current clinical signs and AD symptoms were unrelated to the level of ADHD symptoms.

Conclusions: Even if the clinical diagnosis of ADHD is excluded, children with AD show increased levels of ADHD symptoms. Further investigations need to determine whether early antihistamine exposure is a major risk factor for ADHD or a surrogate for previous AD severity and/or associated sleeping problems.
 

ZeroGravitas

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I think my brain is lacking histamine...
That's exactly what I thought a decade ago...
I had very bad sleepiness with Mirtazapine
...Which I got too; it was like having Kleine Levin syndrome for the two days I took the starting dose, sleeping 20 hours per day. GP was quite alarmed. Although it's a pretty well know reaction.

Histamine used in the wakefulness centre of the brain is largely separate from that used for digestion (and absorbed from the gut into serum). Different histamine receptor types in each area, of course. Excess peripheral histamine is a sign of inflammation that the vagus nerve integrates for the brain to trigger a sickness response. Although extremely high histamine levels in the blood, etc, does seem to induce insomnia (and psycho-active effects), in people with MCAS particularly.

[...]association between atopic dermatitis (AD) and attention-deficit/hyperactivity disorder (ADHD)
RoryReckons (his blog post linked above) talked about his skin issues clearing up along with some ADHD symptoms, when he recently went low histamine:
 

pattismith

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That's exactly what I thought a decade ago...

...Which I got too; it was like having Kleine Levin syndrome for the two days I took the starting dose, sleeping 20 hours per day. GP was quite alarmed. Although it's a pretty well know reaction.

Histamine used in the wakefulness centre of the brain is largely separate from that used for digestion (and absorbed from the gut into serum). Different histamine receptor types in each area, of course. Excess peripheral histamine is a sign of inflammation that the vagus nerve integrates for the brain to trigger a sickness response. Although extremely high histamine levels in the blood, etc, does seem to induce insomnia (and psycho-active effects), in people with MCAS particularly.


RoryReckons (his blog post linked above) talked about his skin issues clearing up along with some ADHD symptoms, when he recently went low histamine:
Does he have ADHD from childhood?

How do you know you have MCAS?

High peripheral histamine should be fixed with peripheral antihistamine drug, is it your case?
 

pattismith

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...Which I got too; it was like having Kleine Levin syndrome for the two days I took the starting dose, sleeping 20 hours per day. GP was quite alarmed. Although it's a pretty well know reaction.
yes Mirtazapine induces sleepiness because of it's brain antihistamine effect.

Usually it resolves after 1 week, I wonder why...

I don't know if I would have experience this attenuation, I was not able to take it more than 5 days.

I even try 45 mg which is 3 times the dose prescribed by my doctor, because I read the antihistamine effect is less when the dose is higher, but couldn't see much difference.
 

ZeroGravitas

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Does he have ADHD from childhood?
Yes, that's the only way you have ADHD (as discussed above). He does not have ME/CFS.

How do you know you have MCAS?
I don't. But generally you'll react to specific things, with allergy type symptoms, various skin issues like hives, etc, many of the high histamine symptoms, which are many, complex and reduced by lowering your histamine levels (AKA "histamine bucket") over days/weeks of exclusions. That's off the top of my head, more here: https://me-pedia.org/wiki/Mast_cell_activation_syndrome

Unlike with plain histamine intolerance, which is harder to get a positive test result for, MCAS may show some specific serum markers, from the inflammatory molecules mast cells release when triggered:
Does he have ADHD from childhood?
Yes, that's the only way you have ADHD (as discussed above). He does not have ME/CFS.

How do you know you have MCAS?
I don't. But generally you'd react to specific things, with allergy type symptoms, have various skin issues like hives, etc. Also, high histamine symptoms, as with which are many, complex and reduced by lowering your histamine levels (AKA "histamine bucket") over days/weeks of exclusions. They can only be temporarily masked with anti-histamines, as those don't degrade histamine, only block it's action at specific receptor types. So anti-histamine may lead to higher serum histamine levels. That's off the top of my head, more here: https://me-pedia.org/wiki/Mast_cell_activation_syndrome

Unlike with plain histamine intolerance, which is harder to get a positive test result for, MCAS maye respond to mast cell stabaliser meds and may show some specific serum markers, from the inflammatory molecules mast cells release when triggered [AAAAI]:
Mast cells are known to produce many molecules that cause inflammation, but only a few mediators or their stable breakdown products (metabolites) have been found reliably elevated in episodes of MCAS and measurable in commercial laboratory tests. Increases in serum mast cell tryptase and in urine levels of N-methylhistamine, 11B -Prostaglandin F2α (11B-PGF2α) and/or Leukotriene E4 (LTE4) are the only useful tests in diagnosis of MCAS.
Usually it resolves after 1 week
For me, I had immedate hyposomnolence same day as taking it, then stoped the day after stopping.[/QUOTE]
 

pattismith

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For me, I had immedate hyposomnolence same day as taking it, then stoped the day after stopping.
[/QUOTE]
Yes this is what is expected!
I meant that Mirtazapine sleepiness usually resolves after one week of daily Mirtazapine intake, which I couldn't achieve myself.

Raising the dosage is supposed to help getting over the sleepiness faster, but I couldn't reach that goal even with 45 mg Mirtazapine, 3 times the initial dosage.