Eye problems

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

Re: Eye problems

Postby WinonaLemonade » Mon Oct 05, 2009 4:29 pm

has anyone else ever bruised their eyeball? i did mine when i was little and i spent ages having it looked at, i was very lucky because it missed part of my eye that would have blinded it by a really tiny distance. it was my right eye and i did when a peice of snapped off pencil lead hit it. with easy bruising and everything could hms have contributed to it, i don't know how many people bruise their eyes without hms.
you couldn't see it on the outside of the eye it was inside and it was really sore.
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Re: Eye problems

Postby SAMMY » Mon Oct 05, 2009 6:38 pm

Well I'm not sure about bruising?? I have increasingly started getting bruising around my eyes and feel like I have been punched. Haven't got a clue what that one is about. Any eye doctors in the house?? SAMMY
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Re: Eye problems

Postby Englishgremlin1 » Wed Oct 07, 2009 5:04 pm

This is going to sound very weird and strange but even the doctor. at the hospital I saw today cannot explain all of it.

I went back to the results of all my scans and eye tests and they have confirmed that it is not MS, the nerve signals are working okay, and a scan of the eye shows the cornea and the back of the eye to be working perfectly well. The weird thing is that this still leaves double vision in one eye, and double vision between the two eyes. They can correct some of it with prisms which they are going to try again but now comes the weird part that the doctor could not explain.

When my head is straight up and level there is double vision within my right eye. When I lean over to the left with my head the double vision gets a lot worse however when I lean over a certain angle to the right with my head the double vision virtually disappears. The doctor couldn't solve this one and has simply come up with a suggestion that when I read I have my head sloped off to the right!

If that is not weird and strange I do not know what is. But least Irix skate the threat of having eye surgery are now going to keep an eye on the situation, I suspect is partly for the freak factor!

Anybody else found anything as odd as this?
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Re: Eye problems

Postby SAMMY » Wed Oct 07, 2009 6:52 pm

Oh my god sweet!!! What kind of diagnosis is that??? That just emphasises my point that doctors just blow out green stuff when they don't have a clue!! :shock: That is awful sweet!! I hope you get a better verdict than that! If it was your doctor with that condition I bet they wouldn't take that for an answer!! :wall: Love and hugs :hug: SAMMY
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Re: Eye problems

Postby Sue New » Wed Oct 07, 2009 7:37 pm

Gremlin -that is very odd indeed - even for us bendies :think:

As you know, I also suffer with double vision, which on the most part is controlled by me having one of the lenses of my glasses patched so I can only see out of one eye. I have a similarly weird thing though in that if I turn my head to the far left or right, my double vision gets worse, and also if I look down (i.e outside the scope of my glasses lens).

I think that sometime with us bendies, the Dr's just cannot come up with an answer. The optho chap that I saw considered doing eye muscle surgery on me to help correct the double vision, but decided it would be a "disaster" as the musles would only weaken off again eventually.

I am glad that they are go to keep a close "eye" on things though.

Have you recovered yet after the ambulance ordeal?

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Re: Eye problems

Postby Finarda » Thu Oct 08, 2009 4:14 am

Very weird. I'm sure they've thought about this before but my Dad just got diagnosed with Ocular Myasthenia Gravis (easily treated with a low dose of prednisone) and his main symptom was double vision. Other than that the only thing I could think was that the tendons which stabilise the eye muscles might be loose in one eye or on one side of each eye and when the head is tilted in that direction it causes double vision.

Could the monocular double vision have a different reason than the binocular double vision? Just a thought.

Glad it's not MS anyway.

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Re: Eye problems

Postby Englishgremlin1 » Thu Oct 08, 2009 8:24 am

Thanks for the info - I will waite and see what there clinic letter says, could be interresting reading.

Sue - not over the ambulance yet - refused to go back unless it did not depend on the ambulance - still worn out and done in.
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Re: Eye problems

Postby Finarda » Fri Nov 13, 2009 12:08 am

I just got back from the Eye Clinic at our hospital. I've been having problems with dry eyes for years but it's been getting more and more painful for the past couple of years.

They did the Shirmer (?) test where they put paper in the bottom of my eyes for 5 mins to see how much moisture it would soak up. My left eye was borderline (15mm) but my right eye was very dry. They then put local anaesthetic in my eyes and repeated the test and this time, without the irritation of feeling the paper in my eye, the results were just under 4mm in each eye which is classed as Severe dry eye. They then put dye in my eye and used a special blue filter and observed corneal erosion. The edge of the eyelid that touches the eye was also apparently hard and crusty so I have to use warm compresses for 20 mins four times a day to try to heal up my eye lids. I also have to put artificial tears liquid eye drops in twice a day and artificial tear gel in twice during the evening and night and I have to do it every day regardless of whether I feel pain or not.

I have to go back next month and they will do a dilation exam and I think they're going to repeat the Shirmer test (woo hoo, can't wait to have paper stuck to my eyes again... :shock: ) Forgot to add that they're also going to talk to me next month about surgically implanting plugs into my ducts that drain tears away to try to keep the tears around longer.

I think they're also going to suggest that my GP refer me to a rheumatologist to get investigated for Sjogren's Syndrome (which my mum had too). (I also have septal erosion in my nose, as well as dryness in every other moisture producing part of my body).

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Re: Eye problems - Contact Lenses

Postby David Deans » Sun Jan 24, 2010 10:50 pm

I'm going to be properly trialling contacts for the first time this week (had an aborted go last year). It seems with the EDS III it's unwise in terms of risk (although not prohibitive) for laser surgery, although I've been told with tech advance there's possibilities in the pipeline. Anyway I loathe specs with a passion and do my best to avoid wearing them, however I need to have something in order to be legal for driving again. I have a low prescription but with astigamtism, which I believe is not unusual with hypermobile people. So it's going to be toric silicone hydrogels. My concerns are increasingly dry and gritty eyes which I get (like right now), I've been told I've got some blepharitis too.

I've been practicing with trial daillies and after a couple of days I get them in and out pretty well. I can feel them when they are in and I probably should not have swapped from eye to eye hygiene wise, but I can do it. I just really hope I can tolerate them as this is big for me, I'm aware EDS type people seem to be slightly more sensitive in general.

So has anyone got tips, good buys, experiences etc?

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Re: Eye problems

Postby Spireite » Sun Jan 24, 2010 11:18 pm

I've worn rigid and now gas permeable contact lenses all day every day for over 25 years without problem. Good job, cos I'm totally dependent on them. I have been trying to get on with glasses for 13 years in vain. Every optician gives me a different prescription, and none of them has been any good. Everything is stretched, eg straight lines become curved, I'm 20 foot tall and I find it very hard to walk. But I am legal to drive! The only optician who seems to understand a little bit says it is due to my severe astigmatism. With a lot of astigmatism round here, how does everyone else get on?

My optician is obsessed with my age, in that I am too old for single vision lenses. My actual vision doesn't come into it you notice. However, I can see OK with single vision lenses, but I'm sure not for much longer. Then what am I going to do?

I also have had blepharitis for donkeys years, which I've read is more likely for us.
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Re: Static Vision/Persistant Visual Migraine Aura

Postby Stone » Sun Feb 14, 2010 11:53 am

There's nothing abnormal about having visual static, especially at night - it's a form of dither, which increases your perception of edges. (the link's a bit technical but it's basically to do with reducing overall error when thresholding). I have some level of static all the time and get strong after-images in bright light but have always been told it's nothing to worry about. Sounds to me like normal visual variation but by all means get it checked out when you're next at the doctor's. I wouldn't have thought it would be migraine aura since it's by definition not an aura unless you get a migraine afterwards...?

I think there's always a lot of things that are normal-to-us but we can get to be a bit paranoid about what's HMS-related and what isn't; I know I do.

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Re: Eye problems

Postby SAMMY » Sun Feb 14, 2010 6:18 pm

I am wondering with eye problems. The black spots on the surface of my eyes. Is this HMS related or something completely different?? Sam xxxx
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Re: Eye problems

Postby Finarda » Sun Feb 14, 2010 7:58 pm

Before I forget, Stone, it is absolutely possible to have an aura without a migraine headache afterwards. A migraine is a "potentially degenerative neurological disorder that frequently presents with an aura and/or a headache". ie a migraine is not a headache, it's a disorder.

Cameronjcw, I've had visual vertigo and yours doesn't sound like like what I experienced - I had it bad last year and couldn't even go into a grocery store without either throwing up or staggering all over the place because the sight of the aisle as I was passing them would just throw my balance off.

I've also had a mild visual snow for years and it sounds very similar to what you are describing. When I get a visual aura it doesn't start off the same as the 'static" or snow, in that I have a blind spot that then turns into flashing wavy lines but eventually the flashing takes over my whole vision and looks like a very strong "static" or 'snow". By strong I mean that I can't see anything but the flashing lights, and am basically blind.

I do have migraines, including opthalmic migraines (ie the flashing lights without the headache), migraine without aura, and hemiplegic migraines. I complained to my neurologist about the snow a few years back and he tested me in this parabolic dish that had little lights come on and off - basically it tested whether you could see out of all parts of your vision including your peripheral vision. I could see all the lights but I said to m that they were brighter than the snow I was seeing. He asked me if it hampered my daily activities and I said no, so he just left it at that. I only find it really distracting when I'm looking at something of a uniform colour and quite dark and then it's extrememly distracting, but watching moving images such as the TV or just normal life I don't see it much.

I know that I have more of a problem with afterimages than other people (in the old days when computer screens were green, I'd walk out in the daylight and all the white buildings looked bright pink to me! This is entirely normal (basically the green 'detectors' in your brain get "tired out" after seeing the same colour all the time and the opposite colours are then 'seen' by the brain) however, no-one else who was using the computers for exactly the same time as me saw the effects, and similarly with just looking at other afterimages - although other people detected them they didn't see them as frequently or strongly as I did.

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Re: Eye problems

Postby Finarda » Mon Feb 15, 2010 5:37 pm

It does sounds like you've got several problems going on. Your problem with the floor tilting up is exactly the same that I had when I had vertigo bad last year. I'd walk down a hallway at work and it would tilt up as I was walking and I'd have to try to walk normally even though I couldn't tell when my foot was going to make contact with the floor.

The doctor said that the vertigo could be migraine related. If I go downstairs and tilt my head forward the world starts tilting around me. Oddly enough, if I tilt my head backwards (eg when washing my hair) I induce a migraine.

With the vertigo, I'd look up the thread on vertigo - there are various types and your doctor/osteo/chiro/audiologist should be able to test for each type - with me they ruled out vestibular problems and given my migraine history they attributed it to that (or possibly a form of vertigo associated with neck position).

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Re: Eye problems

Postby Finarda » Mon Mar 29, 2010 3:41 am

At my bimonthly eye doctor exam they were all excited to hear that I had EDS - I had a doc, a resident and 2 students in checking me out! One of the things they noted was that keratoconus is common in EDS and that I have quite bad astimatism in my left eye that is getting worse and my prescription is changing every year. I've been having pretty bad 'ghosting' (ie monocular dipoplia) in it for a while now (well both eyes but mainly my left). They said that the shape is definitely 'off' in my left eye and that there is a significant chance that it is keratoconus. When I asked whether that wouldn't be obvious because I'd seen photos of it they pointed out that like I'd said earlier about EDS you only see photos of the extreme and that to really determine if you have keratoconus it requires a test to detect it.

Not sure what test detects keratoconus but when I googled it there is a scan that creates a topographical scan of the shape of the eye so I'm assuming that's what it is. I should get it within the next month so it will be interesting to see if it explains the worsening 'astigmatism'.

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