Eyelid swelling and cold compresses (and terrible eye doctors in the UK)

[redandunhappy]

Hi,
Does anyone on here find that cold compresses actually exacerbate their eyes and or/eyelid swelling?

I've had terrible eyelid swelling for the past few months, and although cold compresses do seem to help initially in reducing swelling a bit, I find that the swelling does not continue to go down as much the rest of the day (as it would do ordinarily)...and on some occasions my eyes feel more sore and dry.

Is this possible? I wonder what could be going on.

By the way I think UK doctors have no idea! A few days ago, I had another appointment with one of the top external eye disease doctors in Moorfields. I've been so unhappy about my bags and eyelid swelling (which make me look awful and feel miserable) and really wanted them to help me with that.
First the consultant said that blepharitis doesn't usually cause periorbital edema (eyelid swelling to you and me). How can that be true? There are many people on this forum who report it. And they didn't really have anything they could suggest I do. Yes I've been given lubricating eye drops and antibiotics, but no-one seems to think much beyond that.

When I told them I have posterior blepharitis/MGD caused by ocular rosacea and that heat really exacerbates my eyelids, they seemed very surprised by that. Cold compresss have never once been suggested. Essentially they don't even seem to recognise that I have ocular rosacea, despite the fact that my face was looking pretty red, and I have loads of veins on my eyelids and in my eyes, and my eyelid rims are red and inflammed.

It's the same with rosacea here though - not many doctors know that much about it.

Anyway, rant over....if anyone has any thoughts about cold compresses actually not helping but hindering I'd be very grateful

[irish eyes]

Hi there

Cold compresses make my eyes feel more soothed but that is all - they don't improve in appearance. I am very careful when using heat although that was meant to be the `answer' to this condition. Doctors used to advise bathing my eyes with hot water - the hotter the better. Then the trend was to use cold compresses and back to heat. Well I can cope more with the cold than the heat!

I must agree about UK doctors' competence and interest in this topic, sad but true. My consultant would disagree on the topic of swelling though, he said it is consistent with blepharitis. Why are they all saying such different things?

[peter56]

Hi,
did you try Elidel cream placed onto the eyelids up to the lid margins.
Elidel does contain pimecrolimus anti inflammatory ingredient.
Most frequently, Elidel helps to counter lid swelling.
If Elidel doesn`t work, you may try Protopic-Tacrolimus cream, 0.03% or 0.1%.

It is no problem, if a small quantity of Elidel or Protopic does come into the eyes.
Many ophthalmologists to recommend to place these creams into the eyes to suppress the inflammation - conjuncivitis.
They do that, because they have no good working anti inflammatory topical drugs available.
Did Azyter eye drops not work to suppress the blepharitis?

[Scout]

redandunhappy,

From the Merck Manual, diagnosing eyelid swelling. Apparently, there are numerous causes. Check out the whole article and read the table that lists all the possible reasons for eyelid swelling.

http://www.merckmanuals.com/professi..._swelling.html

Eyelid swelling has many causes (see Table 7: Symptoms of Ophthalmologic Disorders: Some Causes of Eyelid Swelling ). It usually results from an eyelid disorder but may result from disorders in and around the orbit or from systemic disorders that cause generalized edema.
The most common causes are allergic, including
• Local allergy (contact sensitivity)
• Systemic allergy (eg, angioedema, systemic allergy accompanying allergic rhinitis)

peter56,

Are you a physician? Because those medications you are mentioning are pretty heavy-duty medications that have quite a few possible serious side effects. They are only prescribed by a physician and usually only with a proper diagnosis, such as atopic dermatitis. They are usually not prescribed for blepharitis.

Scout

[redandunhappy]

Thanks everyone for your messages.

Irish Eyes- I think your consultant must be right about swelling being a common symptom of blepharitis. Of course that's not to say that there can't be other contributory factors like allergies which are causing or exacerbating the blepharitis.

And to be fair to the Moorfield's team that saw me, they did request I have some blood tests to test my kidney function (as periorbital edema can be a sign of kidney problems), although it was the registrar's idea not the consultant's, and the registrar had to persuade him it was worth doing. Having said that I've just found out that they have all come back as normal.

However I'm still slightly worried that because I've been taking two medications which can affect the kidney, that even though they are within "normal" range, that it still might be something to do with my kidney. Could this be possible does anyone know?

The two meds are metformin for PCOS and doxycycline for the blasted blepharitis, which doesn't seem to work anymore anway. NB the registrar said that receptors to drugs can sometimes stop working which is what I think has happpened with me. I wonder if having a break from the medicine can resensitise the receptors - anyone know about that?

Scout - thanks for the link to that Merck site, that's a really useful website. I need to explore the whole allergy thing more, because weirdly when I was abroad recently for a few day and staying in a hotel, my eyelid swelling was suddenly terrible, and it was after a night's sleep. I had requested hypoallergenic bedding, but maybe I was allergic to their washing powder. And now come to think of it, I've had this problem many times when I go away and sleep in a different bed.
I know I'm allergic to house dust mites, so perhaps I need to wash my bedlinen more! And get new pillows.

Peter - thank you for your suggestions also. Funnily enough I remember elidel being prescribed to me a while back for my excema. Correct me if I'm wrong, but isn't it more to treat inflammation of the skin....whereas eyelid swelling is more inflammation of the tissues underneath the skin.

[AprilShowers]

Redandunhappy,

Just read your post , having posted a similar post to you about how unhelpful State run NHS UK Medical Staff are, I was relieved knowing someone else had made this comment also. Otherwise, human nature being what it is, people would say to themselves "I bet he's at fault and they are probably sick to death of him". Not true. I bet when you went to Moorfields you were so impressed with it's famous UK Eye Hospital reputation and in awe of the staff. I know I was when I went to an equally famous Leeds UK hospital for treatment, inwardly I was saying to myself "" Thank God, I should be cured within months and can get back to work", that was 19 years ago. They are famous - for their parking charges but that's about all. Say no more.

[robster]

I agree about the terrible eye doctors in the UK. I had an appointment today to see an eye doctor at the Bristol Eye Hospital. To say he was clueless about dry eye was an understatement, he was constantly checking his medical journal and at one point even left the room for 5 minutes to ask another doctor what a good TBUT would be for a LASIK patient! Seriously I couldn't make this stuff up.

Anyway after about 20 minutes of farce he gave me some eye drops and said they would make everything OK. Sigh.......

[redandunhappy]

That reminds me of my previous appointments at Moorfields.

At the first one, when I asked the registrar whether he could measure my TBUT, he didn't know what I was talking about and eventually said he didn't know how to.

At the second one, the registrar measured my TBUT and told me it was normal. I knew this couldn't be the case as my eyes had been very uncomfortable in the air conditioned environment at work. And sure enough, when the consultant saw me and did it, he told me it was around 6/7 seconds.

The consultant always says "there is no risk to your eyesight", and trys to tell me my eyes don't look so bad (yeah right), so I think they just concentrate their efforts on other external (and perhaps more serious) eye diseases.....very frustrating for all of us though

[AprilShowers]

Red and others: I was in the hospital theatre room, laid on the trolley they use with the big lights above, I had been anaesthised and after about 20 minutes of eyelid groping and muttering the Doctor packed it in - he admitted he did not know, nor could he perform the insertion of punctal plugs into my ducts, he kept dropping them. I asked him to persevere but he wouldn't. It was 6 months before I could get another appointment to carry-out this procedure and what a waste of time that was - they fell out within a few weeks. We'd get better treatment in India or Poland.

[irish eyes]

AprilShowers

Looking at where you live, I assume you are referring to one of the two teaching hospitals in that same city. If it is the one nearest the city centre, that is the one I know well. Were they really that bad? I've been fitted with plugs (there) a few times over the years so it isn't as though they don't know what to do. That sounds dreadful.

[littlemermaid]

Redandunhappy, Don't use tacrolimus or pimecrolimus near your eyes without Moorfields. There are ophthalmic formulations if you need to go that route.

[Jenn1]

Ladies & Gentleman,

You know what? I am so so sick and tired of these useless and incompetent eye 'specialists', that I am going to send some emails out giving these eye hospitals and places links to this very forum to get a more detailed and thorough education on eye related diseases and treatments and issues. Hopefully then they might actually learn something and offer better treatments or care facilities and if nothing else, a bit more sympathy and emotional/physical support. And I suggest others do the same.

[littlemermaid]

Jenn1,

I think the problem's NHS funding and policy on managing eye inflammation. Almost every NHS eye doc we've seen thinks they've really tried to help within the constraints but we usually get dumped to self-manage without treatment changes, usually with rubbish monitoring despite chronic steroid use. What we all need is regular follow-up, emergency access, and regular vision and eye pressure monitoring. And current treatment.

Also there's no hospital/community optometrist coordination on chronic disease management in place yet.

Eye surface inflammation is still an unrecognised cause of blindness, especially paediatric. The pain and debilitation is still not recognised. With a desensitised surface, it can be worse because the cornea opacifies.

Where are our medical professional champions? We must support the ones who do know and care, and make the changes happen.

I'm trying to pursue this through these new regional policy-makers while they are planning the service now, asking for clarification on treatment pathways. (LM is very lucky to be in NHS tertiary referral now but I had to pay to get there; she was serially discharged on steroid only, misdiagnosed for 1y by the county 'cornea specialist' who did not recognise MGD, 'there aren't enough hours in the day' while running massive private cataract surgery list. Imagine where we'd be without this fantastic forum.)

Paediatric eye inflammation monitoring is even more * than adult because it's not even in the budget and the NHS 'any qualified providers' do not seem to want paediatric licences (professional liability insurance premiums) - protocols and drug behaviour are different for children, the eyes behave differently.

Check out the lovely 'treatment pathways' for glaucoma and uveitis, and compare with us (call it 'severe dry eye inflammation'). Next time we phone up the emergency eye clinic desperate, I'm calling it uveitis and I bet we're straight in there.

[Jenn1]

@LM, my jaw just dropped at the lack of care youngsters receive. They say young people are less likely to have serious eye conditions and most resolve by themselves, but what about those that dont? Not everyone can make it to the capital for top treatment and are left to seek help from their gps who we all know in most cases lack basic knowledge in good eye care management and diseases. I am seeing an eye specialist soon for the thyroid and I hear mine is the head of the regional eye hospitals where i live, so should be fun asking him my huge list of Qs!!

Btw, i've already sent out a few emails. So glad you are pursuing the policy makers. I see people with sprained ankles get better care than people with bad eye surface inflammation, surely they can budget well enough to pay for surface disease management. I wasnt even told how to do lid cleaning or scrubs, and even a sheet with instructions would have helped. I'm already onto the big store chains to stock up on eye care products for bleph/mgd etc... and machines such as the blephasteam etc. We need to demand the services or we wont get them, so please everyone keep asking.

[littlemermaid]

left to seek help from their gps

The best place to get some advice and referral is really an optometrist, but it has to be one good at disease who is current. I've got high hopes for the new optometrist MSc qualifications. Unfortunately, there's no register of interests yet so it's best to ask the regional hospital eye clinics who they've got working part-time 'in the community'.

Sometimes I feel it's all out there for us, it's just that it's so disorganised and underfunded, so finding it and getting access is the trick.

Hopefully soon, at least for adults, the new 'any qualified provider' NHS will give us all better access and support. Certainly, eye operations are tempting for quick-fix clinics and this will have to include long-term management. They will probably also want the orthoptic and optometrist monitoring business since the high street opticians don't seem interested.

Jenn1, Hope you get on well with Mr Head of Regional Eye Hospitals + team - nice referral, very well managed

They say young people are less likely to have serious eye conditions and most resolve by themselves, but what about those that dont?

That seems to be more the problem, getting diagnosis and referral for dry eye or inflammatory conditions in the first place faced with lack of knowledge in the profession. Once children are in regional or county hospital service, we find paediatric ophthalmologists, referral between departments, and some regular treatment pathways (eg uveitis, Sjogrens). Seek and ye shall find, but get used to travelling... (also, travel cost reimbursement is assessed on parent income until age 16, joy).

I would love to know if anyone is getting treated long term on UK medical insurance.