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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Thursday, August 27, 2020

face blindness, calories, instructions, horses

Researching possible connections between prosopagnosia (face blindness, which I was born with) and dissociation (possible trauma induced prosopagnosia development), I ran into other research connecting empty sella syndrome (which I have) with high blood pressure headaches (which have landed me in ER and hospital more than anything else). I'll just copy/paste the entire thing over. Original post is here.

Things I'm still struggling with that I never talk about-

  1. Despite all the vids I've shared and movies and shows I've seen lately, I cannot see Tom Cavanagh's face in my head unless I'm looking directly at him. The prosopagnosia is strong with that one. Joe Flannigan, no problem. I mean, I can at least get a forehead and eyes on him and I'm not even into Joe Flannigan. But yeah, I'm having as much trouble memorizing Tom's face as I had Scott's face and never admitted it for years. Imagine being married for 15 years before you even confess you can't picture your husband's face when you close your eyes and you're sitting right by him. I was born with this deficit, which would explain a lot of my childhood lack of friends. I don't usually think about it very much, but I'm wondering now if this could be related to my weird height projections when I watch TV, although I feel those are more trauma related and the prosopagnosia seems to be a hard drive problem, so I'm not sure how they could be related unless the prosopagnosia is also dissociative somehow. I think the reason this popped into my mind today is because my ENT doctor is very tall and a bit handsome and I'm always surprised like I'm meeting him for the first time, even though I've seen him a number of times over several years. (btw, appointment went great, yay) I can't picture him right now, either. I concentrated hard today on trying to remember, the way I finally got Benedict's face down after a couple years, but it's not working. Some faces just don't stick, even in small sections. I can usually zoom in on something like an eyebrow and then eventually reconstruct like puzzle pieces, but some faces are so slippery they fall out of my head like the Silence as soon as I turn away.
  2. I still can't do simple math since the brain fail in 2004. My reading has finally snapped back fantastically, but I can't even keep a simple calorie count because I mangle the math so badly. My math dyslexia since 2004 is still really off the wall. Remember, I passed college algebra on the first try using an ink pen so I couldn't erase, which the teacher got after me for, citing I was intimidating the other students. I still can't keep addition columns straight. I can multiply in my head if I focus really hard, but I can't add in my head, something I'd been doing with ease since the third grade, or even on paper. Forget subtracting. Dividing seems to work just fine. Not one doctor in all these years has expressed an iota of concern or curiosity. I've asked for help a number of times, and aside from finding out I was being GAF scored by a psychologist, any kind of testing has been brushed off beyond having to remember a set of three or four words for a couple of minutes, and I even messed one of those up and was still pushed out the door.
  3. I can't retain simple instructions from a doctor about anything unless I meticulously write it down. I don't mishear, because I do sometimes remember bits later in the day and realize I got something wrong, but trying to convey this challenge doesn't seem to connect up to how they have to repeat things to me several times because I'm obviously already getting mixed up, and I've been known to call offices back for instructions because the instructions on check out papers were so vague. Despite being able to retain loads of research (visual learning), I can't seem to retain audio instructions.
  4. My short term memory is still horrible, but I'm getting better at hiding it or covering for it. I've been wondering if the memory thing has been a dissociative problem I've lived with all my life but was never aware of it till my brain flopped in 2004. I'm having to work so hard all the time on continuity since then that I can't help thinking I was about as oblivious as a person can be before 2004. That's gotta be why it took me years to pick up on the relevance of my GAF scores. I'd be very interested in what they'd have been pre-2004. Possibly worse? I was living with such restricting mind blinders that everything was black and white, and being a dissociated autism spectrum high IQ kid with PTSD triggers didn't help. I think I've arrived to a place where I can look back and see everything about me was about reactive survivalism.
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Out of the blue it hit me to look up dissociative prosopagnosia. THAT got interesting. If you like weird brain behavioral studies, I hit the jackpot.

Prosopagnosia as a Type of Conversion Disorder (So prosopagnosia is becoming a broader field of study, very interesting.)

Does anyone experience dissociative symptoms? (I was so relieved to find other people talking about this.)

Prosopagnosia is a neurological disorder characterized by the inability to recognize faces.  Prosopagnosia is also known as face blindness or facial agnosia.  The term prosopagnosia comes from the Greek words for “face” and “lack of knowledge.”   Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces, while still others may not even be able to distinguish a face as being different from an object.  Some people with the disorder are unable to recognize their own face.  Prosopagnosia is not related to memory dysfunction, memory loss, impaired vision, or learning disabilities.  Prosopagnosia is thought to be the result of abnormalities, damage, or impairment in the right fusiform gyrus, a fold in the brain that appears to coordinate the neural systems that control facial perception and memory.  Prosopagnosia can result from stroke, traumatic brain injury, or certain neurodegenerative diseases.  In some cases it is a congenital disorder, present at birth in the absence of any brain damage.  Congenital prosopagnosia appears to run in families, which makes it likely to be the result of a genetic mutation or deletion.  Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development. 

My mom told me years ago that I was born with water on the brain, which is called fetal hydrocephalus.  I never received follow up care or checkups for that condition, despite my mom describing how round the top of my head was with fluid after I was born, and naturally no mention of surgery. I'm sure my dad would have prevented any and all interference in my 'natural' development.

Around my late 30s, an ER doctor revealed I have empty sella syndrome, which I've always assumed was a result of that fetal hydrocephalus. 
The most common symptom potentially associated with empty sella syndrome is chronic headaches. However, it is unknown whether headaches develop because of empty sella syndrome or are simply a coincidental finding. Many individuals with empty sella syndrome have high blood pressure (hypertension), which can itself cause headaches if severe. (My adult history is rife with high blood pressure and nasty headaches.)

Researchers believe that a defect in the diaphragma sellae that is present at birth (congenital defect) plays a role in the development of primary empty sella syndrome. The diaphragma sellae is a fold of dura mater (the outermost layer of the membranes that line the brain and spinal cord). The diaphragma sellae covers the sphenoid bone where the sella turcica and the pituitary are located. In some affected individuals a tear in the diaphragma sellae allows the underlying membranes to push through (herniate), which allows cerebrospinal fluid to leak out and accumulate in the sella turcica. The pressure exerted by the fluid can flatten or enlarge the sella turcica. 
Prosopometamorphopsia and alexia following left splenial corpus callosum infarction: Case report and literature review (This is unrelated but shows how damage can cause distortion recognition, and if you think about it, I may have had a little damage during development or birth (there were no MRIs back then), although no one has ever noticed splenial infarction on my MRIs.)

Prosopometamorphopsia is known to be caused by splenial corpus callosum infarction . In this case, prosopometamorphopsia likely occurred because facial recognition information was interrupted by the splenial infarction as it was being transferred to the facial fusiform area after being processed in the face perception areas of the occipital lobe.

I had a very very nasty headache in 2004 that lasted for several months (worst part was 6 weeks of sleeping only 2 hours at a time and unable to lie down during that 6 weeks), followed by brain changes that included losing my ability to do simple math, not being able to read for several years, not being able to drive for 4 months, accentuated memory problems and time disorientation, plus cranial nerve damages that resulted in loss of taste and smell for at least two years, unable to make tears in one eye for four years, and continued altered taste and smell. Did I already have a headache syndrome from empty sella that made bell's palsy exponentially more painful?

It was during that time that my prosopagnosia became so noticeable that Scott had to keep an eye on me because I'd follow other people around while we were out shopping. I had never told anyone before that time frame that I'd been unable to remember faces through my whole life. I'd always been smart enough to cover for all my flaws, or didn't even realize I had flaws because I'd already adapted so well. 2004 changed all that. I lost being smart.

So, as I'm sure you can imagine, I'm intensely curious about these brain changes and why I could never get any kind of doctor anywhere interested in finding out more of what was going on with me around 2004. MRIs from before that happened showed no obvious damage other than the incidental empty sella finding, which suggests to me that I was born this way and that all it took was one *something* (illness? poisoning?) one year to cause so much catastrophic loss for me, and it truly is catastrophic when you consider I got a 32 on an ACT test and now I can't even add and subtract correctly, and I couldn't read and retain for several years, much less the memory problems. I have been physically and psychologically dependent on my husband for 16 years because of this. The disability I was granted in 2009 didn't even reflect any of this. I was already autism spectrum with social deficits and severe depression and had been living with fibromyalgia for years before that even happened, and then in 2007-8 I grew so ill with a cytomegalovirus infection that I needed nearly round the clock assistance with everything I did for months. Notice I didn't even bring up the year I was ejected from a flipping car. Piece of cake, right?


So this week I caught myself remembering my secret horse world when I was a kid hating being human. While other kids daydreamed about socializing and becoming someone, I was deep in a fantasy world in which I was a horse. I started a horse board on my other pinterest so I could dig around looking for what I used to daydream about. I'm into black liver chestnuts with fiery manes, although I like them super flaxen, too. The more jet black the chestnut, the better. I had whole families of horses set up in my head during grade school. 

The original page for that is at
Very load heavy, had to use a different browser to handle it.

Or here's one.

Here you go, have a playlist. I'm making supper now.