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.