DES and the NHS (UK)

[jlg_uk]

Hi fellow UK people,

I've spent the last 7 months or so trying to find out why my eyes were so sore, light sensitive and achy. After 2 optometrists, repeat visits to my GP and referral to an NHS ophthalmologist I'd been told my eyes were fine and that I either had migraine or chronic daily headache.

My GP was telling me it definitely wasn't my eyes. Although I'm aware people can have pain referred to and around their eyes it didn't seem to fit my problems. I then went to a different optometrist who found problems with my meibomian glands being blocked.

I still think there's more to be discovered here, or at least some testing to rule out other contributory factors like lacrimal gland problems etc or any ocular surface issue.

I'm not someone who has had much dealings with the NHS before my eye problems. Is it reasonable to except further NHS assistance or am I simply on my own with a private optometrist here?

[lisiamc]

Do you have a hospital with an Ophthalmology Department near you? If you can get a referral, some of the specialists there are likely to be helpful. I was lucky when I first started having recurrent corneal erosions, and got referred to an ophthalmologist who suffers from RCE himself. So he truly understood the pain and frustration I was feeling. (Although he couldn't "fix" the problem for me, at least he didn't dismiss the pain and fear I had, and that alone was a big help.)

I think it's helpful to do as much research on your own as you can, to be an informed, pro-active patient. There are excellent resources available through this site.

Also, some opticians have an interest in dry eye, and you may be able to find one locally who could help you.

In my case, and from what people here say, there is usually no miracle cure for anything to do with dry eyes. It's unlikely that the NHS is witholding the magic bullet, unfortunately. If you go private, you may not find much difference from your NHS experience. Most people eventually develop a treatment plan that makes life as liveable as possible, either in conjunction with doctors or on their own.

Good luck, I hope you find something soon that works for you.

Lisa

[Mcgoldilocks]

Just keep plugging away at them. Ask them about the tests that you want, ask lots and lots of questions and try not to let them brush you aside. Eventually you should find a doctor who will take an interest.

Bear in mind that going private isn't necessarily the answer to all your problems, you'll probably find that they are the same doctors who work for the NHS.

[jlg_uk]

I did get referred to an NHS ophthalmologist at a nearby (small) hospital. He was the guy who decided I had migraines (based on the photophobia). He didn't look at my glands and didn't seem to feel there was an eye related problem at all (he did perscribe Viscotears which didn't help much). Even my otherwise non-effective GP doesn't think this is the problem!

Also - by private I really mean an optician/optometrist which I have to pay for as opposed to private medical services and Doctors (I'm not in BUPA or anything). (Sorry if I was misleading here).

I've done lots of research and looked at the problems I've been having from many angles but without getting particularly far. Now at least I've been told about my meibomian glands being blocked I'm doing warm compress/lid scrubs/drops etc.

I guess I'm just trying to find out how much I should expect from the NHS (I've been considering asking for a second opinion from a Doctor who isn't in their 20s). Perhaps I should try for a referral to a different ophthalmologist at a proper hospital. I know there's no instant cure, but I'd like to understand my eye problems as much as possible and reduce the impact they have on my life.

[stella]

From my experience - you can expect next to no help from the NHS You will get much more help from this site
A good optometrist is very helpful - mine diagnosed blocked mebomians and was able to actually demonstrate this with digital photography
I paid £100 to see an ophthalmo privately and he diagnosed blepharitis - which is why the glands were blocked - his suggested treatment was useless
The treatment and resolution of my problem came through endless research (on my own )followed by lots of experimenting with types of heat (i use steaming ) and ways of massage and squeezing to unblock the glands after making the oil liquid . Then my big breakthrough was when i was prescribed chloramphenical eye ointment for an eyelid cyst i developed - by my GP -- I realized that it greatly eased my symptoms as well as getting rid of the cyst and have used it (sparingly ) on the lid margins only ,ever since(after doing the heat massage squeezing and cleaning routine nightly ) for the last 6 months and the good news is that i am soooo much better and never need drops during the day any more and can actually forget about my eyes most of the time
It took a lot of hard work experimenting and a lot of despairing moments before i reached that point
I dont know if you are similar to me -- you can always try my methods and see if thy work for you Look up some of my posts on my particular ways of eyelid hygiene - It takes too long to post all the details again here
Anway all the v best We dont have much help if we live in GB so the least we can do is try to help each other

[jlg_uk]

Thanks for the replies everybody. Much appreciated.

Stella: actually I had started steaming recently in response to your post about it (in addition to a compress at a different time of day). I haven't braved the squeezing of both sides of the eyelid part yet - primarily because I've got large fingers and not sure there's room (bottom lid wise) without touching my eye. But to be honest, I have a problem with the upper eyelid scrub with a cotton bud because it's just too tickly/wierd for me to tolerate and I'm not convinced how effective my massage after heat treatment is on either lids (especially the bottom ones) - so I'm going to give the lid squeezing a try (after making sure everything is clean and steaming).

I do like the steaming anyway, because when I get in from work my left eye is usually sore from the drive home (45 minutes) and I can look into the steam and get immediate relief. It's nice to have a break from blinking once every second or so (which is what it's like when my eyes are sore) and knowing it's probably helping my glands is a big plus.

I'm guessing chloramphenical eye ointment is not available OTC? It doesn't look like it has side effects etc so I might add it to the list of possible things to try though I normally prefer to avoid medication. Do you think this is primarily helpful for your blepharitis? I'm not sure that I have blepharitis - my margins aren't encrusted/inflamed as far as I can tell though I always though the inner side was pretty red (which may be normal).

The annoying thing which you also seemed to experience, is how you can see multiple eye experts and them not detect an eye condition you have - you have to see lots of people until someone notices! No one has ever looked and the inner side of my lids..... should I expect them to have?

I'll try to come up with some tests I can reasonably ask the NHS to do in order to help me understand the extent/cause of my DES problems - any suggestions welcomed

[Mcgoldilocks]

I think you can get chloramphenicol drops OTC. However - they are antibiotics, isn't is risky to be using antibiotics over an extended period of time because they will gradually become ineffective? I could be wrong. I myself am on an extended prescription of doxycycline.

[Mcgoldilocks]

Hi fellow UK people,

I'm not someone who has had much dealings with the NHS before my eye problems. Is it reasonable to except further NHS assistance or am I simply on my own with a private optometrist here?

By the way, it took me 6 months of various NHS appointments to start getting treatment, if you have the money spare then go private and hopefully you'll get quicker answers. I weighed it up and decided I couldn't really afford it - possible treatments I'll need are things like laser surgery. Private health insurance is pricey, I think the cheapest you can get is around £35 per month. Here's link to a good site with more info on how to get the best deal:

Private medical health insurance page:

http://www.moneysavingexpert.com/ins...alth-insurance

[stella]

Hi jlg uk
When squeezing your lids try to pull the lid away from your eye with your lashes and only squueze as near the edge of lid margin as possible - rather than getting your finger /thumb inside the lid Its a bit tricky but it gets easier as you do it and you will gain confidence
As mcgoldilocks says - chloramphenicol eye ointment is available OTC therefore thy cant consider it a very harmful ointment or it would be Rx only.
The reason i get it Rx is that the Rx version does not have mineral oil in it and my eyes seem to react to mineral oil
Rx version is in liquid paraffin/white petroleum - produced by Medicom(probably the cheapest version, hense used by NHS)
I have concerns about using antibiotic ointment every night indefinately - However i mentioned this to my optician/optometrist and he said it was Ok cause it is such a small dose and does'nt actually go in the eye - I just take a q tip ,put a tiny bit on and wipe it between the lid margins making sure it goes on both lid margins (of course it goes on your lashes as well)A bit like putting eye liner on but behind the lashes instead of in front of them
I used to then smear a bit on my outer lids too cause they were so dry - Lately i have started to use vasaline on the outer lids instead
and that seems fine
I took a course of Doxy last year and that really helped- I took that for 5 months orally starting with a large dose and decreasing to a maitainance dose of 25mgms daily and that helped but i was unhappy about taking systemic antibiotics indefinately so i stopped
I would rather use an antibiotic topically than systemically and even though my eyes may become resistant to chloraphenicol - i would not consider that a disaster and there are other antibiotic ointments can be used eg fucidin if i ever got an eye infection or azasite(unavailable in GB i think)but used as a drop for long stretches by our USA sufferers i think
Having said that i may try to eventually get my eyes to tolerate a little vasaline only on the margins - I would definately prefer that - The last time i tried vasaline on my outer lids i could not tolerate it at all - now i can tolerate it Reason ?? I think it was cause my eyes were hypersensitive cause of the "holes" in my tear film
Now my optometrist tells me my tear flm is intact so maybe i can start tolerating stuff i could'nt before
I was actually able to peel and cook onions the other day and no longer need goggles to wash/colour my hair - thats real progress for me

[jlg_uk]

Thanks for the info stella & Mcgoldilocks.

I was thinking of a short course of chloramphenicol eye ointment primarily for diagnostic benefit, based on the positive response you've had. The idea behind this is if helps, then this tells me something about my occular environment and I can tell my GP and optomistrist. Would 2 weeks be a reasonable trial? I've no intention of long term treatment without speaking to my GP about it first.

I could also ask my GP about a prescription for doxy, though I understand there's side effects and this doesn't work for everyone. But again if it has the potential to hep symptoms or my understanding of my problems then I'd be prepared to give it a go. I feel it's a shame to do things this way - I haven't been diagnosed with anything other than blocked meibomian glands, but the poor standard of examinations/diagnosis I've had thus far means I'm far from confident that's all there is to it. Plus the blocked glands could have different causes yet to be determined. For that reason I'm prepared to try a few different medical treatments in order to see what helps and what doesn't.

The funny thing is I'm known for strongly preferring not to take medication at all unless the Doctor says it's really needed. Before my eye problems it was rare I'd even take an aspirin!

[EllMitcho]

Hi jlg

I have to agree with everything above - I just wanted to add something that has help me regarding headaches. I too have MGD / Bleph and used to get regular headaches normally around 5pm each and every day

What I have found helps seems really simple but has reduced the number of headaches. In a word - squinting. When you are conscious about your eyes as you will be when they are dry, sore and/or itchy you tend to squint to 'protect' them, prolong squinting causes the headaches. I now make a point of relaxing my eyes / brow regularly and it seems to have helped.

Hope this helps

BTW I went private - it was quick but you see the same consultants as you would on the NHS - in fact I am now under the same guy via the NHS.


Regards

EllMitcho

[jlg_uk]

Hi EllMitcho

I agree with you about the squinting - and generally the mechanism by which the eyes are protected when we're fighting to keep them open. That in itself creates strain, and frontal headache (in my opinion). It doesn't help that I get light sensitive too when my eyes start to get bad.

I've had symptoms for 7 months now, and in the early months I suffered much worse because I wasn't really tuned in to how my eyes felt, or the strain that was developing. I just fought it with negative results that lasted for days. Now I try to step in a relax any strain which develops which helps - and I use heat on my forehead + over & in between the eyes to relax.

Doesn't help the DES part really, but does help the things that I think occur because of DES. This is my current thinking anyway.

I've already seen an NHS ophthalmologist who was cra... um, didn't seem to help me much. I'm going to give it another go (yay, probable 2 month waiting list!). I'm going to go armed with specific questions and detail printed out this time I think (i.e. do I have posterior bleph? etc).

[Mcgoldilocks]

I recommend you print out all the questions you want to ask - I always end up forgetting what I want to ask.

[cherrybrandy]

hi jlj uk...re your recent post.

Hi jlj...your post sounded soo similair to the original difficulties i experienced with the nhs i felt i had to answer..i was getting fobbed off at gps for about a year before i insisted on a referral to the cornea clinic at the r.v.i. newcastle where they found out id got posterior blepharitis..my symptoms are like yours and is making my eyes so dry i had two punctal plugs inserted in tear ducts...i dont know where in the uk you live but insist you need to see an eye consultant for proper tests etc..i know how this condition can thoroughly devastate your life and like a previous person had posted on des its only on this site where ive found tips and ideas to make it more bearable..let us know how you get on..kind regards cb.

[jlg_uk]

I live in Northamptonshire. I'm going to try to see my GP again, and enlighten her as to my MG status (she still thinks I'm having daily chronic headache). I think I'll insist on opth referral, and may also mention the treatments we were talking about above. Prefer topical and systemic if I start using meds though.

I've actually just ordered some onion goggles - primarily to see what happens if I isolate my eyes from the environment. I'm still not sure if DES fully explains my non burning symtoms - photosensitivty, tried eyes etc (though it may do).