Dry eye Drs in the UK

[Rory]

I have seen so many..and so many who are supposed revered experts

[removed by moderator]

Anyone have any Drs who have been even vaguely helpful?

[Rich S.]

Rory .
Uk eye Doctors and this is in my experience only are absolutely bloody useless!

" Youve got Blepheritis " Heard that one a thousand times or " You not cleaning your eyelash area well good enough ". "Well actually mate i am "

I myself found that i have a bad case of dry eye from personal reseach on the internett and this excellent forum!

You can learn more on this forum about your eye promblem than you can with any UK eye doctor.

The last so called UK eye specialist i sawŁ100 for 20 minutes and his mobile phone kept ringing during my session it was his wife / girlfriend kept asking what he wants for dinner.Marvelous, and quess what, "You have blepharitis heres some drops"

Rich

[irish eyes]

I know just how that feels.

It's like being in some kind of time loop where encounters with consultants are constantly relived and it just goes on......

[jammie_t]

Michel Gullion in London, he is by far the best expert I have seen in the UK.

I have seen him three times and although i'm yet to get to the bottom of my probs, he has ruled out many others and is extremely thorough.

I have seen 4 others in the North West/Manchester area all giving a different, rather unhelpful diagnosis from 'there is nothing wrong with you' to 'you have caused the damage yourself'

http://www.michelguillon.com/

[SallyP]

I can't tell you any good ones, but I would say that the GPs have suprisingly little knowledge of MGD/dry eye, and mine didn't even know what the plugs in my eyes were, and viewed me down the end of his spectacles as some sort of experiment!! Dr Guillion seems to be the best one, but is quite costly. I have one more avenue to go down before I go down that route, but will definitely see him in the future if I'm not happy.

[jlg_uk]

GPs have suprisingly little knowledge of MGD/dry eye

Heh - I don't think it would be too unfair to say the same about some ophthalmologists!

[stella]

In my opinion no ophthalmologist or optometrist/optician can really help blepharitis --- not even the best in the world, because there is NO CURE for this condition at this moment in time .So it is a useless waste of energy time and money looking for "the wonderful doctor who has the cure"
This condition along with many other medical conditions, can at best only be managed
How we go about managing it is very individual
We can only keep trying different options until we find a programme of treatment which is best for "me"
That is where this community is sooo helpful -- sharing experiences and things that help
Proffessionals can and ought to give us support and encouragement and offer the standard things that are used, like eyelid hygiene lubricants plugs etc but that is all they can do
Hopefully in the future there will be more options as new research is done

Then of course some proffessionals are more clued up, and knowledgeable than others, but at the end of it all -- we are left with an incurable condtion which only we can manage
Thats the conclusion I came to quite a while ago
We dont get the help because it just does'nt exist
If it did -- all the ophthalmologists good or bad would soon know about it and be offering it
I hope I am not being pesimistic -- I would just hate to see people out there spending all their money looking for the Dr with the answer

[SallyP]

I have to remain hopeful for my sanity!

Stella, do you think then that the same applies to MGD? I suppose rather than a cure, I'm looking for second opinion as to what it may be. Guess I'm looking for it to be something else that CAN be cured.

It's so sad, and there are people so much worse than me, it's such an underrated illness and I can honestly say, without being dramatic, it's pretty much ruined my life, perhaps changed my life is more accurate, but changed it for the worse. I hate it and it upsets me greatly to think I'll never ever get better, so for that reason I have to remain optimistic, and to be honest if somebody actually categorically said this will not ever get better (say God, whom I wouldn't question any further!), although that may well be the case, time will tell, it would send me spiralling and I don't want to know that.

At least thinking there may still be a cure, I have some hope. It's like when I try a new drop, I feel pathetically excited about it, and suppose I do think I'll find one that will work over a long period of time!

Medicine's changing all the time, and I will still remain optimistic, and research and try new things, I have to, as it's the only thing that keeps me going, but I respect your ability to deal with it so conclusively.

[stella]

Hi Sally
the last thing i want to do is leave you discouraged and desperate
I strongly believe there is a way for you to manage it so that it does not dominate your life and you have much less symptoms

I am fortunate in that i have mine "under control "
HOW
every night before bed ie around 11pm i do the following routine which takes about 15 minutes and keeps me symptom free well into the next day - often until the evening

I steam my eyes for 5 minutes over a jug of boiling water with a towel over my head
When my lids get itchy which they usually do I massage, then steam some more, and then i squeeze each lid with my (well washed ) finger and thumb
5 seconds each lid
I then clean with occusoft on a q tip , then rinse
Then apply chloramphenical eye ointment to each lid margin(like you would apply eye liner) on a q tip
Lastly I use a smear of vasaline on outer lids

During the day and only if i feel dry do i use clinitas ultra 3
This drop is the best for me even though it can sting on instillation
Actually it depends on the state of my eye lids as to how much it stings
I have learned that if i am having a bit of a flare up of the blepharitis it stings more
I have noticed that certain environments make my eyes dry
Staring at a speaker ie in church - I probably dont blink enough
Blow out heaters of any kind ,also air conditioning in cars
Too much computer and TV
In those situations i lubricate well

I feel i can live with this now and if i get uncomfortable I just lubricate well ie several drops at a time and usually celluvisc which is thicker than clinitas and PF

I do find being out of doors whatever the weather improves things , so sometimes i go for walks in the park I walk everyday anyway as i have spinal arthritis and it helps to excercise

Thats me --- It took a long time and much experimenting to come to this
Actually back pain causes me more trouble than the Blepharitis

[SallyP]

Thank you for your reply.

I have a very similar routine, and has given some relief, but not alot.

Interesting about being outside, whatever the weather. I too am better outside. If I'm going for an evening out anywhere, to give myself the best chance of a half decent time, I try and spend most of the day outside, even if in short bursts, and also go for walks, which does help a bit, but isn't always practical. I also avoid the computer and T.V completely as they both (especially the latter) aggrevate things.

I'm glad you are in a good place and hopefully I'll get there too.

Sally

[irish eyes]

I've never been able to `manage' the pain & discomfort of dry eye and blepharitis and I have tried every means under the sun since the wretched affliction started.

I would love it if it didn't dominate life but how can you do that when it's always with you? I've tried visualization and hypnosis, positive thinking, change of career etc etc. Anti-depressants have ended up in the bin because they make me feel worse. The stress of trying to manage it has given rise to a number of other health issues but I'm able to manage those reasonably well even though it's a real pain

I'm constantly tired so everything is an effort - but I still need to feel there might be something round the corner that might help. As I've explored so many possibilities, I'm beginning to wonder what else there might be - but who knows. Sorry to rant but sometimes I feel to be on my `last legs' with it.

[SallyP]

Hi Irish Eyes,

I want to pick up on a point you made. You said you feel tired all the time. I feel tired, but not from the nose down!! My eyes start to feel heavy and tired at about 6pm, but I'm not physically tired, but feel the need to sleep. I try and hold out, or I don't sleep night time. It's not a natural kind of tiredness caused by exhaustion, just simply a feeling in my eyes. Sometimes I give in and have about half an hour about 8.30/9pm, and fall completely asleep, but hate that because for some reason, feel guilty when I wake up and have missed the end of what ever I was watching on T.V, and must be very boring for those around me!! My partner is younger than me, and I'm just waiting for him to put a tartan blanket over my legs whilst I'm asleep, and I'm only mid forties!!!

[thistledown]

teach your GP about DES!

... Anyone have any Drs who have been even vaguely helpful?

i have an excellent GP - but he knows practically nothing about dry eye syndrome. i've been educating him (!) - for which he has been very appreciative! i printed out a whole lot of info from the web, which he put in his filing cabinet and said it would be very useful to him, because he gets a lot of people nowadays, coming in with DES.

he's completely open to prescribing me whatever i think might work - but there are only a limited number of things on his list which he's allowed to prescribe. for instance, i'd like to get Refresh Plus on the Nat health, as it's one thing which doesn't hurt my eyes - but it's not on his list. Celluvisc is though, so i'm getting that - but it's not as good for me.

anyway - my GP is youngish (early forties) kind and intelligent, and likes his patients to be very active (and informed) about their health. this is about as good as it gets, i guess. it's up to us to educate our GPs - by being pushy, if necessary, well informed, and sharing our information.

[irish eyes]

Hi Irish Eyes,

I want to pick up on a point you made. You said you feel tired all the time. I feel tired, but not from the nose down!! My eyes start to feel heavy and tired at about 6pm, but I'm not physically tired, but feel the need to sleep. I try and hold out, or I don't sleep night time. It's not a natural kind of tiredness caused by exhaustion, just simply a feeling in my eyes. Sometimes I give in and have about half an hour about 8.30/9pm, and fall completely asleep, but hate that because for some reason, feel guilty when I wake up and have missed the end of what ever I was watching on T.V, and must be very boring for those around me!! My partner is younger than me, and I'm just waiting for him to put a tartan blanket over my legs whilst I'm asleep, and I'm only mid forties!!!

Hi Sally

I know what you mean about being tired from the nose down but these days I'm just tired. My eyes always feel as though they want to close and of course it makes me feel very despondent and weary. I wake up feeling that way and it gets worse as the day goes on. I work in education so I am lucky that I've had a few weeks of being able to indulge in a siesta. It's return to work next week so it will mean that I get myself to bed even earlier.

Worry not about the tartan rug. My kids are grown up now but I don't think they recall a time that my eyes weren't a problem - I'm sure they thought that I was organically attached to a duvet because I was laid down in a darkened room so much of the time.

[irish eyes]

i have an excellent GP - but he knows practically nothing about dry eye syndrome. i've been educating him (!) - for which he has been very appreciative! i printed out a whole lot of info from the web, which he put in his filing cabinet and said it would be very useful to him, because he gets a lot of people nowadays, coming in with DES.

he's completely open to prescribing me whatever i think might work - but there are only a limited number of things on his list which he's allowed to prescribe. for instance, i'd like to get Refresh Plus on the Nat health, as it's one thing which doesn't hurt my eyes - but it's not on his list. Celluvisc is though, so i'm getting that - but it's not as good for me.

anyway - my GP is youngish (early forties) kind and intelligent, and likes his patients to be very active (and informed) about their health. this is about as good as it gets, i guess. it's up to us to educate our GPs - by being pushy, if necessary, well informed, and sharing our information.

Hi

I have an understanding GP too. I think she has garnered much of her knowledge of dry eye and blepharitis from me. I'd rather it hadn't been this way but that's the way things are.

I remember the days when patients were excessively deferential to doctors and this kind of cooperation would not have been possible, so this can only be a good thing.