AIWS--9year old son

[Gibon]

Hello, my 9yr old son has been living with what I now believe is AIWS
for the past 3 years. It has occurred so frequently he is used to it
except for the instances that are triggered by NT's. He relates
auditory, visual, and time distortions. If he has a severe headache,
abdominal pain, fever, night terrors and/or panic attack it usually
triggers an episode of one distortion perceptual disorder or other. He
may also become disoriented or unaware of his surroundings upon
"waking" from a NT and in a full AIWS episode. He feels my face and
hair frantically as if he can't see me all the while crying that I'm
"so far away". Loud noises or a change in someone's tone (scolding)
triggers an episode. He will cry, "don't yell, everything is moving so
fast." When he was in 2nd grade he suffered so many ailments and
developed school anxiety so severe he had several absences and i began
homeschooling him. His main complaint was that the "teacher yells too
much" and it scared him because "everything was happening too fast".
He saw pediatricians, psychologists, and finally a psychiatrist and
none of them concluded it was anything more than anxiety. I had never
thought any of his complaints were legitimate medical conditions. I
really thought he had a bad case of school and separation anxiety--he
is scared of sleeping in the dark or of sleeping alone--he really is a
social butterfly. I thought he may have been overly sensitive to
reprimanding tones by the teachers which contributed to his school
anxiety. And I thought he just needed time to develop emotionally but
after discovering AIWS and all the information surrounding it, I am
convinced AIWS is what precipitated all the anxiety and fear. I just
don't know if the abdominal or cranial migraine or some kind of
epilepsy causes the AiWS and I don't know who to consult first. I told
his psych but he never heard of this syndrome. I need some guidance. I
would  greatly appreciate any suggestions.

[Tyler Huggins]

My 9 yr old son has this. First episode was when he was 8. We figured out that the Oxygen that I keep at home for my own Cluster Headaches, seems to make his AIWS symptoms dissipate almost immediately (less than 3 minutes).

[Lúthien]

This might be pure coincidence, but I developed cluster headaches (starting when I was 24) after my AIWS episodes ended (at age 18). It was never diagnosed (maybe because it is quite rare for girls to have cluster headaches) but it cleared up after I was prescribed estrogen. I’ve never had it again, thank goodness.

I’m just mentioning it because, well, you never know: maybe there’s some sort of common factor to both. 

Luthien 

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[Tyler Huggins]

And Cluster headaches tend to fade with age – men’s testosterone levels drop with age.  Not sure what the relationship is there, but seems like there could be an estrogen or testosterone relationship.