Eye problems

[Rosie]

Hi all

When we talk about eyes subluxing we mean that the lens is subluxing, ie moving out of its usual place. The lens of the eye is held in place with ligaments and it is muscles that focus the eye by changing the shape of the lens. As usual, with HMS/EDS the lax ligaments mean that they do not always do their job properly and can allow the lens to shift from its usual position. I experience this when I am very tired, and it is like I have a huge blob on my lens, and looking through it is like trying to look through the glasses of someone who is long sighted, whereas I am veryt shortsighted. It doesn't last long, and I find squeezing my eyes shut tightly several times, and rubbing my shut eye, sorts it out.
There is a thread here about one user and her op for double vision, and if you search on 'double vision' you will find some more.
Hope this helps

Rosie

[paige]

Hello Meggie-nut,
I have the same problems as you. My eyes are hyper-sensitive to glare- indoors as well as outdoors and I do not have cataracts . I have dry eyes and floaters as well. I find it helps to use preservative-free lubricant eye-drops, an MGD Rx Eye bag, (it is an eye bag that you heat up in the microwave for a minute and you place the bag over your eyes). I buy my eye drops and my eye bag online from dry eyes. I also use Cocoons sunglasses - from coccooonseyewear. Not sure if I am allowed to give out the addies.

There was an investigation in Which Magazine, September 2011, about how people with serious eye conditions and with the greatest need got the worse service from opticians - I certainly have.

[Llaurin]

I had a retinal detachment when I was about 15yo, no problems since then. I've always been extremely short-sighted, I had LASIK a couple of years ago, prior to my diagnosis - if I had known back then, I wouldn't have had it due to the risks but thankfully it seems to be OK. My vision is now almost perfect, but I have lots of 'floaters' which have got much worse since the surgery. I have 'wandering' eyes - when I'm tired, my eyes go out to the sides a bit so I can only look directly at something with one eye at a time. The optician tried me on a 'stereoscopic' thingy, it had a dot in front of one eye and a scale in front of the other, he asked which number the dot was on, well it was swinging from one side of the scale to the other and never settled anywhere, he said I had a 'degree of strabismus' but still had good stereo vision. That was when I was a teenager, no optician has done that test since so I really should mention it next time I go.

[Nataliyatan]

I'm very nearly legally blind (-8.5, i believe the legal limit is still +/- 10) So have had my fair share of experiences with the opthalmologist!

From the sounds of it, and based on my experience, opticians usually know little about the medical aspects of eye care. They know about measuring your eyes and testing for long/short sight and glaucoma but it usually stops there. So if they detect something other than these things (even infections) they send you off to the opthalmologist - the specialist. I think it's good that they don't try to mess with something they don't fully understand or spin you any yarns (like many doctors I have met over the years!)

You have to see a consultant before anything else because you haven't been diagnosed yet or seen by a 'proffessional' as the optician is not a doctor. They then look at you, diagnose and make all the arrangements and suggestions. If an optician passed you straight on to a physio you wouldnt have been properly diagnosed by a medical proffessional and so wouldnt neccessarily get the correct treatment.

mod edit - quote and some text removed

[meggy.nut]

Thank you for all of the replies! I've been using my eyedrops more which has helped a great deal. I'm thinking of ordering both the eye bag and the better sunglasses; although I will definitely be getting a really dark pair (of Rx sunglasses) when I see the opthalmologist again. He didn't bring it up, but I'll ask about the stereoscopic problems as well. Pretty sure based on the description I've subluxed and then reduced my lenses many times...oh well.

Thanks again, spoons!

[Fiona-Jane]

hiya,

i've just had my report through from the hospital that did my eye tests (we were looking for signs of acute glaucoma as i get really odd aura with my migraines). everything was normal.... until they checked for cataracts. i have very mild cataracts in both eyes and i'm only 31.

i havent seen any obvious visual signs of them (i only get halos when i look at super bright, undiffused, strip lighting. none when i look at other lights) so they're very mild but i've been very light sensitive for a long time now so they may have been in my eyes for quite some time. but i shouldnt start to get any cataracts until i'm quite a bit older.......


has any other HMSers had cataracts start to develop early? any tips on how to limit the speed of their progression?


i'm not overly worried as many family members have (or had while they were alive) cataracts and they all progressed very slowly so chances are that mine will progress slowly too, and to be honest, theres nothing i can really do about them at this moment. my vision is still perfect in my left eye and only slightly myopic in my right so there's no vision problems at present but it is slighly concerning when i take into account my age and the fact that the cataracts will progress. i get a bit worried about how bad they'll be when i get older.....

any info or tips would be greatly appreciated!


fi

Modfairy: Cataracts.

[trekster]

Unsure if im getting hay fever because my eyes feel very gritty, they are clear and just feel really gritty when I wake up or when im driving
(happened a few times and ive had to pull over). It can be quite scary and happened this morning so unsure what the cause is, all i did
was get out of bed!

[paige]

Fiona-Jane,
I am very light-sensitive to glare indoors and outdoors. Everytime I have my eyes tested I tell the optometrists and opthalomologists. I have been told that I don't have cataracts. I have now got about fifteen different pairs of sunglasses and blue-blocker filters. Have a look at Visionenhancers.co.uk.

[paige]

Trekster,
Have you had your eyes tested and been told you thave dry eyes? I have very dry eyes and have to use lubricating eye drops to help relieve the dryness.

[balot]

Once in a while I get this excruciating pain in one of my eyes. Its horrible. I've been to the hospital three times because of this pain, the first two they couldn't find anything, and the last time they say a scar which I was told was an infection. The last time it happened I lost vision and was seeing flashing lights and shapes... it was quite scary! Its interesting to know that its related to HMS.

[~elizabeth~]

Recently I've notice that I've developed Ptosis in both my eyes. I don't really know whether it's been a gradual thing or whether it's got worse over the last couple of months, as my eyes are very sore and dry as well. Now I'm finding it very hard to keep my eyes 'open', and also focus them. I have to work hard to stop my vision from going double at times.

I'm having a lot of neurological symptoms, so I'm worried that the ptosis and focussing problems might be related to this. However, I just read the wiki page on Ptosis, and read that it can be a side-effect of Pregabalin. I was put on a very high dose of this earlier this year for my burning face pain, it turned me into a zombie with Alzheimers and caused all manner of odd side effects including constant eye muscle twitching at one stage. I've managed to reduce the dose now, but wonder if the worsened ptosis and lazy focussing might be a side effect of the medication, albeit at a lower dose?

For some years now my vision has been changing, first I had to stop driving as the road seemed to be 'looming' up at me and I felt I couldn't judge the distance of other cars properly. Now I'm getting the same sensation when walking, similar to what it's like when you get a new prescription for your glasses and the ground doesn't seem to be where you expect it to be.

[paige]

was seeing flashing lights and shapes... it was quite scary

I didn't get any pain when I had flashes of light - (like flashes of lightening) and then started seeing different shapes - completely unlike the floaters I get. The two ophthalmologists I saw were lovely and said that I had had a vitreous detachment. So were the flashes and floaters due to your having an infection then Balot?

[trekster]

Trekster,
Have you had your eyes tested and been told you have dry eyes? I have very dry eyes and have to use lubricating eye drops to help relieve the dryness.

Not yet but have been suspecting this also myself. As im a fibro/raynauds patient it could be autoimmune but then again it could be because i forget to blink (bad side effect to being autistic) and burn the candles at both ends most nights cramming.

Also wondering if i need artificial tears tbh. Is this an optician or a gp prescription?

[balot]

mod edit - nested quotes removed as not needed
Hmm. I was told at the hospital that it was an infection and that it would get better, but the pain is recurring. Its been happening again in my right eye - its honestly one of the worst pains I've ever felt. I'm going to see an eye specialist on Monday, hopefully she will give me some insight. Did the vitreous detachment get better on its own?

[paige]

Hi Balot,
Is it a sort of stabbing pain in the back of the eye which could be a headache and you are getting a referred pain in your right eye? Just a thought as my osteopath explained to me one time that I was getting a referred pain when he asked me where I was getting pain. A vitreous detachment takes time to settle down and, like you, I just got it in one eye - so I could get it in the other eye. I was very frightened. Good luck with the specialist.