hello everyone!
by the looks of it i might be the youngest one he re!
my name is meir, im 25, im a historian of ancient japan and china, and im going blind for reasons i don't completely understand.

but more than that, im here to hang out!

let's get the medical stuff out of the way first.

when i was 5, right before school, i was diagnosed with "high functioning"/"high IQ" classical autism, which, now in adulthood i know is definitely different from asperger's, though I can't understand why, and also with a strong astigmatism.

both were no surprise, my dad was the same.

then, when i was a bit older in elementary school, around age 10, i was diagnosed with both temporal lobe epilepsy and frontal lobe epilepsy, both focal seizures. that was a surprise, before that point, my dad just thought I was being weird or something, I don't really know, I attribute a lot of that to him being an immigrant and, speaking english quite well but not being, i don't know, acculturated, you know.

anyways i went to a magnet school for gifted disabled students at the time, so they flagged it.
i was also diagnosed with non-24 circadian rhythm at that time but that one's just cool in my opinion.

i could go on and on about what my seizures are like but this is already long as it is.

anyways, i took anticonvulsants for some time as a child, but they didn't stop them and either made me have really bad spasming nerve pain and jerks, or just horrible hypersomnia, so we stopped. ive tried as an adult, but it's always been the same, i have a seizure at least weekly still but I don't consider it the worst of it all, I prefer it, I've only had a tonic clonic twice or thrice.

anyways, as a teenager I was diagnosed with Ehler-Danlos Syndrome, I had/have horrible neck pain right below my skull and very low blood pressure, I'm very immune to cold but yet hot very easily, i can't sweat very much and I can't vomit and I'm very tall for a woman [5'11] and very androgynous looking with very low of all sex hormones and long noodly limbs and a fast heartbeat and slightly webbed fingers and toes and always underweight no matter what I do, no thyroid problems though, and my shoulders dislocate and my knees do and i have numbness and everything, and I can't build muscle but have strong flexible ligaments, etc etc......

anyways, at that point I was having what I called migraines, often if I moved my eyes left and right I would get what I described as "a grapefruit spoon scooping out my eyes from the inside", which would last five minutes or so, and weird painful eye twitches.at that time they realized I didn't have peripheral vision, though I don't have amblyopia or anything. I was diagnosed with ophthalmoplegia, but that's never seemed right.

anyways in undergrad that kept getting worse, leading to periods of occasional complete eye paralysis, combined with a sort of double vision effect where you don't see two things exactly but they kind of smash into each other in a tunneling effect, my depth perception has gotten really bad, random black out spots in my vision that go away and come back in similar places, and at least monthly full blindness spells for a few minutes.

this all keeps getting worse, along with fainting spells. no tumor or anything like that, speculations about the optical motor nerve, jaw locking, etc, a biologist friend being worried about demyelination disease, a billion second opinions, for a long time I just gave up, y'know, I've got interests and obsessions to focus on... [Though of course I was obsessed with neuroscience too ;____;]

then during covid times, being in my PhD, it just kept getting worse, definitely because of teaching and going to classes online, I'm usually not on screens that much. having to get accomodations and letters so I don't get fired because classes are online but this is the best job for a chronically ill history obsessee, but with classes moving online if I couldn't give documentation I would get fired if I couldn't use the computer. So I'm in that place right now,,
no clear answers, while being terrified both of going blind and being able to keep any job...


But, I'm not just here for that! I don't know what being just here for that would mean! I'm really excited to meet you all and talk about brains and beetles and art and writing and the world and all of those immense things, recommend some techno music and maybe make some friends!

Thank you for having me!

Hello Meir,
Welcome to the NeuroTalk Support Groups. I don't know that I can offer too much in the way of advice but wanted to welcome you and just add on a few random thoughts while I'm here.

Some of the things you describe are familiar to me as a parent of two young adults on the spectrum. Hypermobility is common in those on spectrum including EDS. You would know that, I'm sure, and that there are many different subtypes of EDS? My two are hypermobile as am I. Not diagnosed EDS. Seizures not uncommon on spectrum. Migraines. One with strong astigmatism. (Lots of info around about autism and vision. Increased prevalence of refractive error and increased astigmatism has been reported in ASD).

Low female hormones in daughter(that she had addressed by endocrinologist) and is better taking added hormones. Suspect high testosterone and others in son. Immune to cold and heat up too easily. They radiate heat actually. Both mine are like that and as are others I know on spectrum. Then again it's not that uncommon in people with Tic "disorders" either and they both have "tic disorders". Neither have thyroid problems.

Any scoliosis or kyphosis? You have low BP.
You don't have Postural Orthostatic Tachycardia Syndrome ?

It would be better if those seizures weren't happening at all.

Anyway, I'm just thinking aloud and seeing a few similarities between my own family and your situation not that it probably helps. I'm just sorry you're dealing with such a difficult situation with your eyesight and so many other conditions as well.

I wonder if your eye problems are EDS related or if the sum of all your symptoms actually fits a type of subset on the autism spectrum or EDS or is a condition that is uncommon or rare enough not to be thought of by your doctors. I was just looking up an EDS site and it stated how all the zebras (people who are diagnosed with EDS) had different stripes and I thought how true that is of every individual everywhere.

How interesting your studies must be. I truly hope that you find the answer to your eyesight problems so that you can continue with them without all the difficulties.

take care,
Lara

Hey Meir,

Welcome to the forum. Loved reading your introduction. I just wanted to add something. Given your webbed fingers and height have you explored the possibility of Marfan's Syndrome?

I wonder if you can also reset your circadian rhythm by getting light on your retinas every morning at the same time. There are cells in our retinas, ganglion cells, that act as clocks for our body. They can determine from the spectrum of colour of morning light that it is morning. It can help greatly for anyone who struggles to get to sleep. 20 minutes + in the morning outside is best.

Intrinsically Photosensitive Retinal Ganglion Cells

I have no idea what Techno music is, but it sounds noisy!

Best wishes,

Atty

Welcome mosscaptor.

Welcome, mosscaptor!

I hope that you can find some ways to work around the severe problems you've been having. You must have already found a few ways since you seem to have earned a Ph.D. and have a job teaching. Congratulations on achieving so much in spite of so many obstacles!

Not having peripheral vision, for instance, must be a serious problem. You describe yourself as going blind but let's hope that that isn't really happening.

I hope you'll find some helpful information here.