Hi any young dry eye sufferers out there!!

[dryeyeout]

Hi everyone!!

I've had dry eyes for quiet some time now I'm 19 years old and can place the problem 5 years back. I have absolutly noo ideaaa where it came from or what has bought it on and it had been easy to control before but now its gone out of hand ..... its spread to both eyes and i'm constantly putting drops in and doing warm compresses, steroid cream, strong lubricate for when i sleep etc.. although its not so much my eyes go red but my eye lids just change (i think from the swelling due to the eyes being dry)...

I just wanted to know if there is anyone out there who relates to me/give any advice?.. or could give me an insight into what they think might have brought it on.....
also has any sufferers out there who experienced this at a young age with age has it disappered or gone worse?

Thanks everyone

[littlemermaid]

Hi Dryeyeout ~ My daughter, LM, started age 11 with meibomian gland dysfunction (blepharitis), which could now be called ocular rosacea, age 14. The docs say there's a lot of hypersensitivity and she struggles with the usual different methods we learned here to keep the MGs going and maintain the eye surface. Does this sound like you?

What is the steroid cream? Is that for skin rash? Did you use steroid, or anything else for skin, when younger?
Do you have a regular ophthalmologist?
Do you have punctal plugs?
Is anything you use causing hypersensitivity/allergy swelling in the eyelids?
Have you had improvement taking oral flaxseed/fish oils?

She feels she's too young to go on the forum but she will be Littlemermaid herself soon. She reads it, esp to check what I'm saying and make sure I'm not upsetting her favourite docs

How young would you like? This perception that children don't get dry eyes and co-morbidity is a major problem leading to lack of public health funding and treatment for it, and lack of diagnosis, anywhere in the world. Even in high-income countries, misdiagnosis before useful treatment mean is still 2y (US, UK, Switzerland - PubMed). Where we hang out there are babies with dodgy eye surfaces that are maintained, and MGD starts anytime from birth esp with infected eyes or derm problems. There are plenty children with systemic and autoimmune conditions like Sjogrens and even worse. Worldwide, 1/3 of childhood blindness is untreated preventable cornea disease (International Centre for Eye Health, LSHTM). In fact if your mum is eg vit A deficient, that would be pre-birth dry eye. Joy.

Thanks, Dryeyeout: It would indeed be great to hear from anyone who has improved in their mid-20s after teenage dermatology. My favourite success stories here include anti-inflammatory and lipid-improving diet, fun activities and exercise, eliminating allergens, and managing the eyes well so we can get on with enjoying life.

[dryeyeout]

Hi little mermaid!!

Hi little mermaid!!

It's so great to see you speaking for you daughter, I don't get alot of help from my family but it's mainly my fault for being secretive about this condition. It must be so hard for her to have this start at a young age but she seems clever and I'm sure she will begin to cope.
My eye dont seem to be hypersensitive occasionally in the morning when I go outside the wind can cause my eyes to squint but that fades away after a while. Before it got out of hand everything my eyelid would swell (as in droop) I would put warm tea bags on my eyes before I sleep for a week and some hydrocortisone cream and it would go then I would carry on with the cream everyday when I sleep even though I know it's not recommended but it helped!
Now the reoccurance rate is very high and it doesn't seem to go away in both eyes for a long period of time.

When younger I had small amount eczema on my arm and it occasionally flares up on the back of my neck when I'm stressed, not sure what I used when I was younger but it doesn't not seem to affect me much now
I see it says your from London is that London, UK?... Because here goin to the eye doctors has been the worst experience with public health care you have to first go to the gp and then book an appointment which is months later with the eye doctor then wait hours to see them only for them to test my eyesight (which is fine, and I thank god everyday that it hasn't been affected) then hand me some drops and cream and not tell me what it could possibly be
I recently had to go private where she said my eyes are very dry advised me on some drops and omega to take and said if I can't handle it to go back for plugs
I haven't had punctual plugs before because I'm scared of putting something in my eyes do you think it's a good option?
Usually I take fish oils but some days I forget I haven't used it consistentt for long enough so I will try that but I dont know if it's much help

That's so nice of you... I'm sure when she does join the forum she will be a great input although I'm much hoping she doesn't have to and it will go away for her... What are the different methods she uses to cope??

That's so sad to hear!! It's a shame but I do think that doctors overlook these problems as a problem unless it becomes severe, I wish I was told in the beginning what to do maybe it wouldn't be so bad... I never knew there where younger sufferers out there mostly because on most sites one of the causes of dry eyes says ageing I always thought something was wrong with me ... I hope the younger sufferers like your daughter and many out there find some relief both physically and emotionally because it can be hard to cope with at such a young age

Thank you little mermaid!! I'm very exited in finding out other people's stories and just finding a way to even manage it will help wonders!!
What are some of the methods used in your favourite success stories? I'd love to try them out

Thanks again for taking the time to reply, it's nice to know someone can finally understand and relate to me
Look forward to your response

[littlemermaid]

Hi Dryeyeout ~

I haven't had punctual plugs before because I'm scared of putting something in my eyes do you think it's a good option

Yep, could be. LM has lower punctal plugs and she likes them. Absolutely no problem. No need to fear, putting them in is very easy, esp if the doc is a good experienced ophthalmologist. You can have a bit of local anaesthetic on the eye. Also, as you can read here, they fall out sometimes anyway, or can be removed anytime.

hand me some drops and cream and not tell me what it could possibly be

That is truly rubbish, well done for getting an independent assessment and sensible advice. However, now you have medical notes at this NHS clinic, you can go back and build up a history if needed, or transfer the notes to another hospital. If you can get good treatment in another country we'd love to know.

What is this cream? hydrocortisone? An ophthalmologist would not use it near the eyes. In fact, there is evidence that hydrocortisone cream on the face for minor skin problems has caused periocular rosacea in children (search PubMed). No panic. But think carefully what you're doing since I'm not getting the reason why you're using it because it does sound like it's causing problems.

What did the private ophth say about the swollen eyelids? Are you reacting to the eyedrops or the preservatives in them? Everyone here tries very hard to find eyedrops without preservatives. We are also using Celluvisc cold from the fridge, which feels good, and many people like a cold compress for inflammation.

What are some of the methods used?

Are you using normal blepharitis treatments? (search Moorfields blepharitis, or Good Hope Hospital, or NHS blepharitis or dry eye, or NHS clinical guidelines) Read Dryeyezone for full information. Search Dryeyetalk using the advanced search box top-right, eg 'omega 3 oil'.

LM has 3.5y ocular rosacea with recurrent skin flare-ups and reinfecting meibomian glands. As needed, on a doc-guided regime, we use Celluvisc + Hycosan/Hyloforte tear substitute drops to keep the eye surface moist, Chloramphenicol topical antibacterial (preservative-free), Fluorometholone steroid to control eye inflammation, flaxseed/fish oil ongoing. If you are using steroid, the eye pressure (intraocular pressure) must be checked regularly.

To check your meibomian glands, with 2 fingers gently push up under lower eyelash line and examine the eyelid margin in a well-lit bathroom mirror. Some people use a magnifying mirror. Healthy meibom appears as a line of tiny clear dots, or you may get blurry vision as the oils spread in the tear film.

This private ophthalmologist seems to know what she's doing. If you want NHS referral to her (and she's available in the NHS), go to the GP with your eyes very red and swollen, and give the GP a copy of the consultant's diagnosis and treatment letter. Say that she offered to continue treatment and fit punctal plugs etc but you can't afford to pay.

I really hope you can find regular ophthalmology help for this. Some high street optometrists are not bad at dry eye and they have to refer to the NHS hospitals if they see a problem. If you are a student, can you get free optometrist check-ups?

[dryeyeout]

Hi

Sorry for replying late uni had been very manic!

Oh thats great to hear that the plugs are useful and i always had feared things in my eye but anything to keep the moisture in sounds perfect!!..and the fact that they can easily be removed is always comforting to hear

Thanks so much!.. have so long having this problem and thought enough is enough and thought i'd get a proper diagnosis because for years i had been self diagnosing and confusing myself with it all... i think i remember she was available on the NHS and i'm going to see if i can see her through them but its very hard to find time to arrange appointments and go through everything just to see the doctor because i only have one day free a week so i'm not sure what to do.

the hydrocortisone is what they (moorfields) first told me to apply to the eyes its called Hc45 and it is only to use for a short time but for years i believed that this was really helping and i used to apply it almost every night but after reading up on it and also what you mentioned i do know i should stop and i have avoided it and i'm just using regular cream (e45) on the area. Not sure why they prescribed the cream but it was that and the celluvics drops that you have mentioned that they told me to use.. i really dont like going to optomologists because of the experience.

with my eyelids its more that when they are dry i wake up and the eyelid has just drooped not sure why or what it is.. i think the opth said that it is just inflammation because the eye is dry but not many other people here have said they have drooped eyelids so i'm not sure why i do

treatments i've used that have helped ALOT recently is hot compresses every other day, a heavy based lubricant at night, more sleep, omega 3 tablets and i've changed to using systane drops which i find are wonderful!!.. at any point my eyes are dry i put two drops in and they feel great the only thing is the price! its around 6-7 pounds for one bottle
not sure if it has preservative but i would recommend these drops if LM wants to try..... its good to see that LM has her routine how is she coping and finding everything??

Thanks so much!! i hope i can find an optamologist but its not looking good because the whole process seems like it will reuqire a lot of time to go to appointments and i dont know if i can...hopefully i can maintain the methods now though where do i find high street optomatrists?

Thanks again!!

[littlemermaid]

Hi dryeyeout,

I am thinking, go online and check out local NHS pathways for ophthalmology on the NHS choices website, and just search eg 'nhs eye referral london' to find hospital clinics. You can decide where you want to go in advance (eg find out what day the cornea specialist clinic is), and ask the GP for a referral there. If it's really inconvenient you could phone appointments and ask for a change eg to university holidays. http://www.cks.nhs.uk/dry_eye_syndro...wers/referral#

By high street optometrists/opticians, I am meaning eg Specsavers etc but you are looking for a kind optometrist who is interested in helping people with dry eye who will give you a good ophthalmologist referral, rather than just selling you eyedrops. Pharmacists with a consultation service are supposed to advise you but their knowledge varies hugely. Also, as you say, GPs refer to hospital specialists although they can't do slit-lamp exam so can't really be trusted to treat dry eyes. http://www.opticianonline.net/assets...px?ItemID=4057
If you are nearby, consider this NHS ophthalmology service which also has evening clinics. http://www.thepracticeplc.com/jsp/index.jsp?mnk=511

Worried that you are self-medicating without help. If it's difficult to find time to go to the NHS in the working day, and if you can afford it, you could book Moorfields Private or another local cornea/anterior segment consultant in private practice to suit you in the evening or day off.

I think maybe you need to discover whether this is chronic blepharitis and can be managed as that, or whether there are other symptoms that you can be helped with. Really you need referral now from your GP to get on the waiting list for your local cornea clinic, esp if that is eg Moorfields or Western Eye Hospital - you might be pleasantly surprised! If it's a ridiculous long wait, many people keep their NHS appointment on the waiting list and see someone else in private practice meanwhile.

Maybe there are lots of treatments, like punctal plugs, that would help you be happy with this. It would certainly take worry away for you to get doc advice. Presumably you still get free prescriptions as a student?

LM is OK but not brilliant, thanks for asking. Glad you are improving on the warm compresses and eye hygiene and omega 3 oils. This does make it sound like obstructed blepharitis but it would be good to have a diagnosis. We are experimenting with various lubricant drops, glad you're happy with Systane - but there are plenty without preservatives these days and this could be part of the swelling problem.

[jordanh]

Yup right here 19 years old and have been fighting this battle for 2 years......

Everyday is a struggle, i don't think i have dry eyes from lack of tears, but from MGD. Eyes are always oily and i can feel the tears but the oil just over powers it. Ive been on restasys for a while now and no luck with that, i take my multi vitamin and also B6 and flaxseed oil, with no success. I thought i got this problem from contacts but i don't think that's possible since i would always clean them well and dispose of them accordingly. Ive used every single drop in the pharmacy and 0 of them have really done anything spectacular. I have an apt with my ophthalmologist tomorrow and i have a ton of questions to ask her. Might just become one myself since I've read up on just about everything relating to the eyes. Will keep you posted.

Question:
Do your eyes feel literally dry or do they feel oily like mine?