Where to start ...

[Benjamin193]

Well I'm 21 and live in the UK , I seen so many opticians with my eye problems, they all suggested to use warm compresses because I had mgd. I did what they said and it started to get worse so I finally got an appointment with the nhs, the dr told me the exact same do warm compresses and it will get better.
however recently the pain has become unbearable I stopped using contact lenses which seems to of made my eyes even worse , they constantly feel sore and hurt when I go out in daylight. At night I'm waking up with them feeling so dry and gritty which I didn't really have when I wore contact lenses. I went to see a specialist in derby who said I had memboitis (spelling) and that I should just continue to use warm compresses , he prescribed me doxycycline and steroid drops , does anyone know if these will work at all , I am in such constant pain that I've had to stop work and university to come home and be with my family because I just can't function with day to day tasks , it's really getting me down . Ben

[lizlou29]

Hi Benjamin

Firstly, welcome to the forum. I really do understand what you are going through as I am on the edge of leaving my job - hanging for dear life at the moment! You will find a lot of support and practical guidance here from people who have been going through this a lot longer than you or I but I hope I can help in a small way.

A few questions for you:

What area of the UK are you in? Littlemermaid generally knows the better eye hospitals/clinics to go to but she is super busy so I hope she sees this.

Do you have any signs of facial rosacea or allergies or is the specialist pretty sure this is from contact use?

When you say you are seeing a specialist, do you mean an Ophthalmologist rather than the Optician you were seeing?

What steroid drop have you been given, how long have you been using it? Has it given you any relief as yet?

How long have you been on the Doxycycline? Generally it takes 3-6 months to see the benefits. A lot of people on the forum have found Doxy helpful so don't give up on this unless you have any really negative side effects then you speak to your specialist about any alternatives. You may well have been told you could experience nausea after taking it. I did at first but that was remedied by not lying down for an hour or so after taking it.

Are you taking any Omega 3 supplements?

Have you found a suitable artificial tear drop? I went through loads before I found the right one. If you are using frequently you definitely need the preservative free ones.

Lastly, from my own experience if you aren't happy with the specialist you are seeing then seek a 2nd/3rd opinion if possible. No one can cure this for us unfortunately but you need someone to work with you to help you get to a functional level.

Best of luck and feel free to send me a private message.

Liz

[Benjamin193]

Hi Liz ,

I'm back home in derby with my parents I normally live in Chester with my girlfriend which is proving a bit hard , think she's getting bored of me always going on about my eyes.

The ophalmologist thinks it's due to contact lense wear I do however have oily skin and a dry scalp .

I've been using the doxycycline for around two weeks and the maxidex steroid drops also.

I've do a warm compress in the morning and evening with a mgd bag and I steam my face during the day , I never seem to be able to see any oil coming out from the lids when I do this though , is this normal ?

I've been taking omega 3 and flaxseed. I have just also order seabuckthorn oil to help .

My tear break up time in my left eye is 3 seconds and the right is 5 seconds the left one is the one that is always causing me pain .

Ben

[littlemermaid]

Hi Ben, So sorry. Have you seen any of these guys? No need to pay Private because the GP refers NHS on Choose & Book if your eyes don't get better after 3m (NHS Clinical Guidelines) http://www.derbyhospitals.nhs.uk/pat...sultants/eyes/ Personally I would avoid anyone who thinks they 'treat lacrimal system for excess tearing' and look for 'ocular surface disorders' and 'dry eye'.

What do you think has happened to your eyes? Have you told your Consultant it's this bad? When treatment hasn't worked and we go back, they can try the next option. The Ophth should tell us what state the meibom is in, and prescribe and advise for that.

Have you tried pushing gently with 2 fingers upwards under the lower eyelash line? that's where we can see the dots of meibom oil along the eyelid margin when everything's working OK. Sometimes it's fine but we can't see it - a good doc can push quite hard to check this.

How long did you struggle on with contact lenses with the dry eyes and MGD? If you lift your upper eyelid away from the eye surface, is the pain on the eye surface or eyelid? Do the Optom and Ophth say there is neovascularisation?

If you have any trouble getting seen by a hospital Ophthalmologist when needed, use a local Optometrist to monitor you (good idea anyway) and refer to the hospital Eye Clinic quickly.

[Benjamin193]

Hi I've already paid to see someone private I saw mr anandan ,
He said that it was blocked memboimian glands and to continue to use warm compress each day . I'm currently on doxycycline and steroid drops which seem to be helping with inflammation slightly but the dryness is constantly there even when I put drops in. The warm compresses do not seem to be giving me any relief whatsoever .

Ben

[littlemermaid]

Do you think the eye surface has suffered from struggling on with contacts? they wouldn't be able to see that if there's no neovascularisation or general red eye inflammation. If it has, then you need to keep your eyes very moist with drops and even wraparounds and a night time cover to bring about the healing. The eye surface might be desensitised so you may not feel the urge to blink - so blinking practice and computer breaks, possible humidifier.

Did Mr A. think about your contact lens history? Everyone seems to have MGD these days... Do you have acne? (my daughter does and an antibac facewash helps even though she doesn't use it round the eyes). Have you ever tried Azyter? Punctal plugs might be an option after you're off Maxitrol.

Do you like him or want to work on this with him? or do you want to try another one? There was no one in our local Hospital Trust who knew how to manage this well and cared, so we ended up in London with specialists. In your case, it could be Birmingham. This has affected your quality of life so much it might be worth it to seek out a specialist there even just once. If you search here in Dryeyetalk there are a few suggestions of who.

Do you need sunglasses when you go out?

[Benjamin193]

I think that it might have suffered from continuing to use contacts. I use to wear them for Long periods of time , as mad as it sounds the left eye feels better with contact lenses in .

Mr A seemed okay but didn't seem to understand the pain I was in , I did think that he would of put plugs in because of the dryness in the eye . There's no excess tearing in my eyes like he said there normally is in people with blocked glands .

I don't suffer from acne. I've always had pretty clear skin., it gets oily round the nose and I get a dry scalp which I use tgel on . I don't normally need sunglasses when I am out , I wear normal glasses which seem to hurt the left eye more , I've been to to few opticians to see that the prescription is right and it is , what made me laugh is one said I've seen people with. Worse dry eye than you who show no symptoms .

Ben

[littlemermaid]

Can you pick out one Optician who is sympathetic and takes a professional interest in dry eyes without talking b*s or trying to flog the endless eyedrops? even if it's just to use them for hospital referrals and observation on what's happening? You also need your eye pressures checked when you are on Maxitrol or any other steroid, especially within 10 days of starting. I say this because if they see 'morbidity' they are currently obliged to refer to Ophth for opinion, which is handy. Or NHS Co-care monitoring with hospitals, but very few districts have that yet.

If they don't know about 'neurotrophic pain' from dry eyes, that's a fail (see Dr Google). There's nothing to see in the slit-lamp ophthalmoscope. Maybe you're looking for someone who can talk about eye surface cell changes from contact lens overwear, or at least consider it in the diagnosis and treatment.

Have you tried covering your eyes at night? or using a gel at night? what are your eyes like when you wake up in the morning? when are they best/worst?

When is your next appointment?

[Benjamin193]

My next appointment is June 5 th with the private doctor he told me to use maxidex for a month and thee doxycline for two months .

My inside eyelids are bright red with veins all over them which starts me wondering if the warm compresses are doing more damage than good

[littlemermaid]

Do you get any relief from cool compress? Our doc even suggested putting lubricant eyedrops in the fridge. Which tear substitute drops did he suggest? Most docs suggest one with hyaluronic acid in. We are using Hyloforte now, and occasionally Minims saline for frequent use. It's important to think about whether your eyes are getting sensitive to whatever you are bunging in.

He knows you are a probable long-term patient - why is he not referring you to his NHS clinic plus team? are you insured? Sadly we have to ask ourselves whether these guys are 'on the make' these days or underperforming in the NHS either in clinical standards or list management

[Benjamin193]

I don't really get much relief from cold compresses , he asked what I was using. Which at the time was blink intensive tears and vit a eye gel for at night .

He did say I could either have a follow up appiointment on nhs or I could go back and see him in June my parents would rather see him because he's a " specialist "

[littlemermaid]

What is your day like now, Ben? It's good for the docs reading this to know.

Keep talking to Lizlou - she's terrific and has tried lots of treatments. Hopefully other people will join in with 'post-contact lens' suggestions and success stories.

[Benjamin193]

In all fairness i am having a good day today kept glasses off. Only steam bathed my eyes today and used my steroid drops , I'm trying to fight the urge to constantly use drops all the time . Yesterday was awful my eyelids were bright red and I woke up twice in the night to put gel into the eyes .

[lizlou29]

Benjamin, I've seen more 'specialists' in the last year, some are ok, some are brilliant and some really really bad but have somehow hailed as miracle workers. If I'm not happy with them I move on and have finally found someone I think I can work with to help me get back to a comfortable state. Are you actually happy with your private doc? I don't think I've ever seen a doc who actually 'gets' the pain and the general disruption to your life but you need to be confident they have a good understanding of your condition and have other options available if your current regimen isn't working. As Littlemermaid said, have you tried Azyter? Can burn somewhat so maybe not the best to use when your eyes are super sensitive but I'm using it on the eye I don't have my bandage contact lens in now and it seems to be helping somewhat (this is the second time round using it).

I don't get relief from warm compresses or cold compresses either. I can never see oil coming out but I know that the glands are blocked.

Yes, I hope a post contact lens wearer chimes in as I have little experience in that area, just the bandage lens I have to have in for 30 days.

So are you having your eye pressures checked whilst using the steroid drop?

Give the Doxycycline time, it's helped a lot of the people on this forum.

As for your relationship, I thought my boyfriend would get bored with me too, I tell him now he is allowed to zone out when I talk about my eyes too much! This isn't your fault and I'm sure your girlfriend cares a lot but it is hard for those around us to know what to do to help, especially when the docs don't even know what to do. I'm actually having CBT for pain management. Focusing on the eyes every waking moment is not good, very very hard not to do because it's a pain like no other (in my opinion) but you'll learn ways to cope until you get more comfortable e.g listening to music so you don't have to focus your eyes on anything or listening to audiobooks if that's your thing.

[littlemermaid]

In my opinion, the minimum qualifications for an eye doctor to potentially be useful to Someone Like You are: a) A pulse. b) Intelligence. c) Willingness to go to bat for you.

From Rebecca's Dry Eye Zone, Coping 101 series http://dryeyezone.com/ 'Willingness to go to bat for you' is a very very big deal with this, as Lizlou says. Everything, in fact, I think. Now we're all on the internet, more important than having a pulse. It makes this bearable.

Might be an idea to make sure you've got follow-up in an NHS cornea clinic ongoing too so that you've got NHS Medical Records and 24/7 backup, just to be on the safe side. Innovation does happen with specialists in NHS research hospitals with a big patient cohort, and the regional teaching hospital units have the gadgets and team.

Some docs are feeling they are less under scrutiny in private practice whereas the opposite can be true considering the consumer has paid big money, and insurance companies and commercial hospital chains are in charge. Here is useful current guidance from Citizens Advice Bureau about Private healthcare which Healthwatch sent me http://www.adviceguide.org.uk/england Fact sheets 'health' and http://www.adviceguide.org.uk/england/healthcare_e.htm