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Dry eyes

Nackapan profile image
42 Replies

I've had problems with my vision and eyes and light sensitivity since the start of b12 deficiency being diagnosed.

Now a new symptom. My eyes feel sticky but no discharge. Heavy and feels like a hair in there but theres not.

I've had a bit of dryness before but nothing like this. I got scared last night as couldnt see well at all. Thought I'd wake up with an improvement. I have with actual vision but not comfort.

Any ideas or experiences of this please

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Nackapan
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42 Replies
Emmers5 profile image
Emmers5

I have had similar eye symptoms for a number of years, no idea if it is related to PA. My eye dr suggests allergies but doesn't seem like allergies to me. She suggested Systane moisturizing eyedrops which helped for a couple of years but then when it became worse she prescribed something that was $$$ and not covered by insurance so the pharmacist gave me what she claimed was the same thing called Zaditor (also made by Systane) which helps tremendously, twice daily maximum. I tried to save a few $ by using the store brand but it irritated by eyes, so I stick with the name brand.

Another suggestion, my mother has eye discomfort possibly caused by severe dry eye and uses serum eyedrops. These are drops created from one's own platelets. Experimental so not covered by insurance but costs her $100 for however much they can create from one blood draw, usually 4-6 months worth. She says they help her very much. She uses them and also an overnight eye ointment.

Nackapan profile image
Nackapan in reply toEmmers5

Thank you for your reply and useful ideas . I think it must be related as my skin very dry too . My nose peels as though too much sun. Oval very dry patches. I'm having more injections but dont think it's that.

Try some of the gel lubricants like blephasol or similar they are really helpful ,I had a couple of really bad years with this as you said it felt like eyelashes were growing inward but they weren’t and no one at eye hospital or opticians could reassure me.its no where near so bad since ive been addressing a lot of the vitamin/ mineral deficiencies and ive been eating lots of friendly natural foods no processed no dairy or gluten as much as I possibly can,I cant pin down any one thing as ive changed so much but there’s a definate improvement.x

Nackapan profile image
Nackapan in reply to

Thank you for your reply.

Perhais not enough fat in my diet? I have lost weight without trying. But cant digest beyond 5-6pm because of fatigue and head pain.

Thars supposed to be healthy to go 12 hours without any food. I drink loads of water. My diet isnt restricted at all. I have the 'milled' nuts on my porridge fbirder suggested which is great as darnt try a whole nut yet!! I used to eat alot of nuts. Some covered in chocolate lol.

I've always had a very good diet and since b12 deficiency keeping uk with supplements and getting regular blood checks. I may have a full nutritional blood test. Will have to because private one. My daughter had one on the NHS as under gastro. Very useful. It will be a matter of what I'm not absorbing anymore.

Just coukdnt believe another near symptom at least 32 now. Roll on neuro opthologist appt. I'm still waiting for. I've seen 3 different levels of opticians and like you find it hard to get reassurance that my eyes are healthy with all the difficulties. Must be messaging ??Even read about Seijens autoimmune condition. But turned it off. Can send yourself crazy

JanD236 profile image
JanD236

Dry eyes can be (yet another) postmenopausal problem. GP’s used to be able to prescribe moisturising eye drops but apparently don’t now unless there’s a co-existing condition such as glaucoma.

Having seen various consultants about both my own and my mum’s eye problems the currently recommended drops for dry eyes are called Hyabak. My mum uses these.

My dry eyes aren’t as much of a problem and I use hylotears and celluvisc 0.5. I find the latter are the best.

All can be bought over the counter and I always ensure I use the preservative free version (but this may not be as important for infrequent use as it is for mum and I who have to use several different drops each day).

Nackapan profile image
Nackapan in reply toJanD236

Okay thankyou. Its certainly new to me . I'm well past the menopause as 59. Perhaps a mix of things??

Good to have names of products as only have optrex ar present . I got that as right at the start of b12 injections my eyes were blurry and vision down badly. and it seemed to help with migraines/chronic tension headaches.

My bike still in the shed! It will be out though

Minnskimoo profile image
Minnskimoo in reply toNackapan

Hi Nackapan

Have you tried Hycosan eye drops? These were prescribed by my optician as I developed blurry vision , terrible, dry eyes then the nasal passages joined forces followed by oral cavity Almost a shrivelled husk here! 🙆‍♀️ Being investigated for Sjogrens and lupus.

x.

Ps Eye drops preservative free

Nackapan profile image
Nackapan in reply toMinnskimoo

Thank you.

Hope you get on okay.

I have read about Sjogrens and lupus. So many overlapping symptoms as usual. Sjogrens hard to diagnose it seems but another autoimmune condition. I must confes I atopped reading ....

onyx33 profile image
onyx33 in reply toNackapan

Feeling the same way Nackapan, I have dry eyes, worse in evening and on waking in the morning have to lift them open often. I also have a few autoimmune conditions and have wondered if ths is related or dread the thought another autoimmune condition, haven't got round to asking GP about this, confidence low regarding responses to symptoms I have related in the past so just buying over the counter eye drops currently.

Emmers5 profile image
Emmers5

I was getting small patches of dry skin on my thighs that would get very dry then turn dark Lots of spots 1/4 inch or smaller. Two or three years. I just tried organic apple cider vinegar and they disappeared after two days.

Emmers5 profile image
Emmers5 in reply toEmmers5

Rubbing it on my skin, not drinking it lol

Nackapan profile image
Nackapan in reply toEmmers5

I did wonder.😅Thank you

I do drink it.

I have these oval very dry patches on my legs. Worse when it was very hot and didnt go dark but angry Red raised and sore. Worst ones behind my knees . Another new thing. I've used derma care emollient and eczema washes which at present kept it away . Also calendula cream.

Janma123 profile image
Janma123

I use Opti-mist spray which helps my eyes, none of the drops did much for my eyes.

I also have a wheat filled eye mask that is black velvet one side and silver silky material the other. You heat it in the microwave for a couple of minutes and then lay over your eyes. It is supposed to soften the and free the natural oils that are released from the base of your eyelashes. After wearing the mask you massage along the lash line with finger pressure. I will find the box and post details. I got it from the opticians.

Jane

Nackapan profile image
Nackapan in reply toJanma123

Thank you.

I did find a warm flannel helped. Such a horrible feeling all the time to add to other things.

Janma123 profile image
Janma123 in reply toNackapan

Found the eye ‘thingy’ tried to post a photo but can’t. Go to eyebags.com and it’s a MGDRx

Jane

Nackapan profile image
Nackapan in reply toJanma123

Thank you

Janma123 profile image
Janma123 in reply toNackapan

Just put it in the microwave - eyes in for a treat tonight!

twoclocks profile image
twoclocks

I have the same problems with my eyes but have never linked it to my B12d. I use eye drops daily which do help, i have been using them for years. I have Hycosan Red for night time and Hycosan blue for day time. they are not cheap at around £10 per bottle but they last a while. My Optician originally suggested using them saying I had dry eyes, however he seemed to dismiss my claim that my vision can change some days (I do wear glasses) he said that it must be because I am tired. I also have the light sensitivity which causes problems driving at night. Hope you get sorted.

in reply totwoclocks

I’m exactly the same my vision also changes on a daily basis,I can either be looking through a smokey haze or next day perfectly fine.I also paid a lot of money for reactive varifocals lenses because I’m so light sensitive it’s like a needle poking in my eye sometimes,I also find not a lot of difference in my vision ability when I wear my good sunglasses for driving I’ve said that for a long time now and really regret buying the reactive lenses because my sunglasses are just as good and also if I needed a stronger lens at any time I’m stuffed as I’d have to pay all that money again if I wanted reactive again,I can change the frames but not the lenses.such a rip off but I was scared because my mum went blind early and it terrifies me in case I go down that same route.

Take care of your eyes as best you can but be wary of opticians putting pressure on you to buy something that you a.)don't really need and b) can use a cheaper alternative.xx

Nackapan profile image
Nackapan in reply to

I use specsavers have spent alot but they have very good deals. I've 2 reactive pairs of varifocaks. Sunglasses that are very dark. Varifocals. Single vision for walks as pysio said. The aftercare is exemplary. Shop far too bright though!!

Also saw a professor who specialises in coloured tints for post concussion light sensitivity and to help reading ect. They came out with the same prescription as specsavers. Gkasses my most expensive to date I do love the titanium frame as so light. Were good for a while in food shops. Still cant read a book. So of some use.

All a struggle

Bengie profile image
Bengie in reply to

Reactive lenses do NOT work (go dark) in your car because there is a UV protection film on your windscreen. I just bought ‘over glasses’ sunglasses 😎 for €10 which I wear over my prescription glasses when driving.

Varifocals are completely different, they allow you to be able to see closeup and distance. Great in supermarkets when you can’t see the prices with only distance glasses. Great for reading books too. No need to have two pairs of glasses one for reading and one for distance. You deserve to treat yourself.

Minnskimoo profile image
Minnskimoo in reply totwoclocks

This is interesting, twoclocks. When you say your vision can change - in what way? Only recently, I have noticed I have to remove my glasses to actually see better as they almost seem to become a hindrance. Wear them all the time (except when removed due to hindrance) Other days, cannot cope without! 🤷🏼‍♀️And yes, driving at night is awful . On the backroads with no street lighting the actual road seems to disappear, even with full beam on. I hate that.

It’s interesting how one question leads to discovery that symptoms are not your own and imagined !

Sorry no intention to hijack post Nackapan. But thank you for asking the question.

Back to Optician’s -GP, mb?

Hoping you get relief and soon.🤞🏼

twoclocks profile image
twoclocks in reply toMinnskimoo

i am short sighted so always wore glasses, but don't need them for reading etc. I crochet a lot so don't need my glasses on, but some days can read the TV listings on the TV, and some days i can't without my glasses, it is as you say Minnskimoo some days my vision is okay without my glasses. Thrones i have also had reactive lenses for years, which i cannot do without, although they don't go as dark as my sun glasses. I bought a pair of over glasses before last winter that have yellow lenses. I have found these a great help at night, they take a bit getting used to as everything is yellow, but they also dull oncoming headlights so i am no longer blinded by them.

And yes in a way its good to know that other people have the same issues/problems that you do and you are not imagining them.

Minnskimoo profile image
Minnskimoo in reply totwoclocks

Thank you for that.

What a job it all is!

Nackapan profile image
Nackapan in reply toMinnskimoo

Does your head sizzle and pains in the back of your head when trying g to read or look at this?

Minnskimoo profile image
Minnskimoo in reply toNackapan

Sometimes I get that-and in the very middle of scalp...🙄

Nackapan profile image
Nackapan in reply toMinnskimoo

Eyesight /strain . I'm also wondering about Occipitak neuragia because of all the pain I get. Still waiting for neuro opthalomogist appointment .(since December 2019)

Minnskimoo profile image
Minnskimoo in reply toNackapan

It's hard to know what on Earth causes these debilitating symptoms half the time. I often question is it also part of being a female with our raging/or not so raging hormones!?

As an aside, any problems with your spine? I have spondylosis of the spine and believe it plays a part.

Hopefully the waiting list for neuro opthalmologist will not be too delayed because of lockdown.

Nackapan profile image
Nackapan in reply toMinnskimoo

Well it had been 8 months already. I thought I'd get in before lock down !

I've had a neck and brain mri which was deemed okay for my age!

Touch wood spine okay do far.

Take care yourself

Minnskimoo profile image
Minnskimoo in reply toNackapan

🤗likewise

Nackapan profile image
Nackapan in reply toMinnskimoo

Thanks. I dont drive at night. Only drive on days sight okay and not very far.

Minnskimoo profile image
Minnskimoo in reply toNackapan

I don’t blame you!

Good thread here btw.

jacwright profile image
jacwright

Hi Nackapan do you also have a dry mouth and terrible thirst? Take a look at Sjogren's syndrome which is linked to fibromyalgia and both linked to B12d .X jac

Nackapan profile image
Nackapan in reply tojacwright

Yes thankyou

I have had a already. I did have oral thrush for the first time after a tooth extraction but was on antibiotics that can cause it?

I havent a terrible thirst.

Have you got it?

jacwright profile image
jacwright

Yes I do and as with all linked to B12d, vestibular dysfunction, dysautonomia...the list goes on. Now, having had a dizzy fall onto a bed knob which ripped out anus split rectum and through to vagina, have a colostomy and awaiting more repair surgery. Thrush ( candida) is a fungal infection which is cause when the natural flora is destroyed by antibiotics jac

Nackapan profile image
Nackapan in reply tojacwright

Oh goodness. Im. Sorry to hear of all of this.

My daughter is in a wheelchair has pots and hyper mobility b12 /PA . ? Hypothyroidism now

All linked. Horrid affair for you. TC

Minnskimoo profile image
Minnskimoo in reply tojacwright

Oh my life, jacwright - that is horrendous!

Hoping repair surgery is not going to be too long a wait for you!

Gosh, you couldn’t make it up could you!

Take care x

buster_uk profile image
buster_uk

Same here Nackapan. I've had dry eyes on and off since june 2018. Red painful and dry no discharge. I use dryeye spray it helps but does not cure. There not as bad as they used to be.

Nackapan profile image
Nackapan in reply tobuster_uk

Hello buster_uk. Glad to hear at least one improvement for you. I do hope you've had many more and getting on okay.

I've just been reading omega 3 can help. Also I used to take biberry lutein and zeaxanthin. I ran out and didnt bother with it. Perhaps it was helping eyes more than i thought or a coincidence. I'm certainly going to get some more to find out.

I will try things recommended as so uncomfortable. And so it goes on ...

Ernest2 profile image
Ernest2

Hi Nackapan,

First I don't have PAS but do supplement B12 after having had B12 problems following chemo in 2015. Have done all forms of supplementation for one reason and another.

This year for some reason I've now got sticky eyes as I think they call it.

What I've learned: Don't open your eyes to go to the bathroom at night. Pain can be excruciating and like eyelids turned inside out and eyelash stuck in eye.

So what I do now before trying to open the eyes ( and don't rub eyelid with finger either) is excercise the eyes by repeatedly screwing up my face about once per second, but Not opening the eyes. Keep repeating for as long as you can. Then and only then gently try to open just one eye at a time. Go for the one that wants to open first . Take it real slow and revert to closed eyes / repeatedly pulling a face if it feels bad.

Not sure if that might help. My problem may be easing a bit in any case.

I did wonder if Amitriptyline that I tried for 28 days at start of this year might be the cause. I will never go near those pills again for many reasons. So many different medics have recommended them over the years for lots of different reasons.

Wishing you well,

Ernest

Nackapan profile image
Nackapan

Yes it will never go near amitriptyline again either

I tried it for 3 weeks for migraines I had at the start of severe b12 deficiency. 3 neurologists and one Gp were urging me to try it. It took longer for me to get off it than I was on it. Tapered. However it dud help my daughter for a while. Both very low doses 10mg.

Thank you for the hints. The screwing uk my face and blinking does help. Also I have put moisturising cream in my eyelids and around socket which helps too. I'm not on any medication so it must be part of the b12 deficiency. I am on frequent b12 injections.

A hot flannel over my eyes helps too . Lots of kind people have put what they use and j intend to try them when I get the stuff in rotation.

What I have learnt from the response is alot of people have this troublesome problem. Not once on top of everything else to deal with.

I wish you well

Emmers5 profile image
Emmers5

I do hope some of these ideas have been helpful. I don't have the light sensitivity that others describe, but I can't stand glare. I use serengetti brand sunglasses with brown lenses. They cut out the glare but not the light and almost feel like a prescription lens as they sharpen all images for me and work well even when it's quite cloudy or in drizzle. I seem to need lots of light to see well, especially for reading. any other sunglasses and they are just too dark. Driving at night is tough and I avoid it. overnight eye ointment is very helpful too.

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