Blepharitis for 3 years

[unicorn]

Sorry you're having to wait so long for your CBT. You're right, it's not a magic wand, but you are doing all the right things and by reading some of the books in the meantime you'll be on the right track. In terms of handling anxiety, I think you have to remember to be kind to yourself sometimes - I can't say I'm very good about taking my own advice! - and tell yourself you are taking all the right steps to aid your recovery. Activities such as yoga can be very beneficial, as well as taking time to do simple things you enjoy such as spending time with friends or family.

I am still thinking that if it's possible, finding an local optometrist who specialises in assessing/treating dry eye would be a very good idea. They'd be able to see you much quicker, and of course don't cost nearly as much as ophthalmologists.

Wishing you all the best x

[Karjade]

Thank you unicorn for all your kind advice. What is a optometrist? Is it an optician? I am at the front of the queue when someone can give me advice about dry eyes and blepharitis! I tell people I have blepharitis and nobody has heard of it like myself when I was diagnosed. I have got all my information and help from this forum and the internet. I am using Hylo Forte again for my dry eyes which I have on regular repeat from the doctors which was a fight to get that because the doctor kept refusing to give me a prescription as it is expensive. However he eventually agreed and also prescribed Lacrilube which I hate using. I am still not sure if I am using the heat pad too much - how many times do you use it? It seems to be drying all the skin round my eyes and above the eyes - maybe I am using it too hot and it is taking all the moisture out. I am massaging my eyes with my finger as I cannot get on with cotton buds as I poke myself in the eye with them! Today my eyes seem to have settled and I even forgot to wear my sunglasses this morning when I took my dogs out and they were not too bad when I came back. I do all my eye treatment when I come back after the dogs because of the pollen/allergies and I find it better that way. As you say it is trial and error - good days and bad days. xx

[littlemermaid]

Hello Karjade,

I just want to make sure you saw this suggestion from another thread because he looks like he might be a promising optometrist to help you - here's the link Anthony Clarke

He is the visiting optometrist in the 2 local high street practices (opticians) listed. He is the regional specialist optometrist in glaucoma, plus dry eye/lid margin disorders. I would not hesitate to ask his advice, at least. Bonus, he's teaching and he knows his way round the hospital services.

To clarify, in the UK optician shops, a dispensing optician does prescriptions for glasses only. The optometrist there has a degree in examining eyes What_is_an_optometrist.cfm and can refer to ophthalmologists in the NHS hospital eye clinics, or private, or NHS emergency, as needed.

In hospital eye clinics, the vision tests are done by optometrists. We also like to see high street optometrists regularly who also work part-time in the hospitals. Optometrists with hospital training are the best for ongoing checks and support any time as backup to the hospital services, plus they do your glasses prescription. Eg they can do intraocular pressure checks and monitor the retinas, if you felt you needed a bit more support and advice. Some advertise as providing NHS co-care services with hospital eye clinics for glaucoma management.

There is a huge variation in skill in high street optometrists though - eg we saw one very good on recognising meibomian gland dysfunction who did not recognise swelling on the optic nerve heads even though he photographed it beautifully. So for us, they need to have eg MSc in chronic disease management or the hospital experience, used to taking history and examining for the ophthalmologists. Also, they tend to flog eyedrops and eyelid scrubs off the shelf whether they are suitable or not. So, careful choosing an optometrist.

[Karjade]

Hi littlemermaid. I live in Northampton and was wondering how to research a good optometrist in this area - am I looking for one at an optician? My glaucoma specialist Miss Diana Mather which you can look for on Google seems to be an expert in all fields of glaucoma but not sure about blepharitis or dry eye. She seemed to know what she is talking about but I would like to see a good optometrist who is an expert on dry eyes, blepharitis etc. Can you see them on the NHS or does it have to be privately? Do you have to see Anthony Clarke privately as he works at Leicester Hospital and would I have to be referred by my doctor which I know for a fact he would not!! Miss Mather has told me I have posterior blepharitis Lid Margine Disease with dry eyes. Is it an optometrist I see at Northampton General Hospital Eye Department when I get an appointment because they are Registrars for the NHS consultant I am under. I am totally confused!! As for eyedrops and eyelid scrubs - I think I could flog him some as I have so many!!

[littlemermaid]

Hi Karjade, His LinkedIn page says he works at two opticians, Optivision in Leicester (50 mins away), and Christine Pirrie in Stamford.

I just Google 'optometrist Northampton glaucoma' or 'optometrist Northampton dry eye' or 'optometrist Northampton blepharitis', then look at qualifications and experience.

I ask the hospital orthoptists and optometrists if any of them work 'in the community'. Registrars may do the eye checks but I would think orthoptists did your visual fields - they won't mind if you ask what their jobs are. Hospital optometrists are chatty because the tests are repetitive and they are knowledgeable about conditions.

Since he is the regional coordinator, I would approach him for advice if you can find him, maybe privately at the opticians since you're not registered at Leicester hospital. There's no one leaping out of the page in Northampton, is there, except a lot of people pushing contact lenses and 'designer' glasses and laser eye surgery. There's one that does keratoconus, which suggests more expertise http://www.tks-optometrists.co.uk/. This salesy environment makes me sick when it's our health and eyesight at stake. We've wasted so much time and money seeing half-informed private opticians who couldn't diagnose blepharitis and eye surface problems and been ripped off eg £60 just for retinal photographs. But when we found these more informed local opticians with hospital experience, they were supportive as much as they could be.

All this is why I would ask Mr Clarke's advice about what your best options are. If it was me, I'd just book an appointment with him at Optivision to check him out, but it depends on how you feel about doc-shopping versus waste of money because I've got used to the trailing round now.

To find out what glaucoma monitoring is available NHS locally apart from the hospital clinic - the GP should know (yes, I know) and a high street optician should also know. Online you find your NHS region website and search 'glaucoma pathway'. There is NHS contribution for eg glasses with an HS2 or HS3 voucher if you're seen in hospital http://www.nhs.uk/NHSEngland/Healthc...s.aspx#voucher. NHS Direct on 0845 4647 should tell you for sure.

Sorry not to be more helpful. I'm as confused as anyone.

[Karjade]

Hi Littlemermaid. Thompkins Knight and Son is just up the road from me http:// www.tks-optometrists.co.uk/ which I did find yesterday - what is keratoconus? I will definitely go to this optician even just to look in the shop. It is not long ago I had an eye test and I am not due one until next year on NHS. My eyesight had not changed much but I did buy some tinted long distance glasses which do help - I also wear sunglasses a lot when I am out. If I go to see these people am I expected to buy glasses? This is the reason I am going to see Miss Mather at NGH because at least I can skip the waiting list on the NHS. At least she monitors the glaucoma and she is very nice and I do trust her. My doctor is useless and we are seriously looking to change because I have absolutely no relationship or trust with him. Thank you so much for all your help and research and I will consider Anthony Clarke - Leicester is not too far from me. My friend and I have been shopping there on the bus a few times - probably easier than driving! You have been very helpful - you always are xx

[littlemermaid]

It is not long ago I had an eye test and I am not due one until next year on NHS.

Karjade, You may be entitled to more eye tests in opticians because you are NHS hospital registered with glaucoma, if you want them - it's just a way to get support on the NHS because there's budget for glaucoma monitoring. You know how it is, just something for the optician to put on the NHS claim form.

No, you don't have to buy their glasses or endless bloomin' eyedrops. Also, you are entitled to the prescription and eye check reports for your records, whether paid or NHS. If you want eg retinal or eye surface photos, they can email them free as a .jpg attachment to print at home. Just to escape, I say 'I don't like any of the glasses' or 'obviously I'll shop around because I think we need something specialist and I'm not seeing it here'.

I'd take advantage of all your contacts to find your way on this journey - speak to helpful NHS staff and helplines (NHS Direct, Patient Liaison), local optometrists, Eyecare Trust. And, especially, as we were saying before, the International Glaucoma Association helpline based in Ashford, Kent http://www.glaucoma-association.com/ - what an excellent organisation to chat and answer your questions.

If you saw AC in Leicester, he would dilate your pupils to do the full eye exam at the back of the eye (or if you are suffering with dilation eyedrops in a dry, painful, sensitive eye, you could tell him first and he might be able to do it without drops with extra lenses). So you wouldn't drive home yourself and you need sunglasses and hat. We've got used to travelling and making big commitments to get docs we like but I understand there are pros/cons - I'm sorry if you discover he's not the optometrist for you - I'm just somebody internet-shopping while watching the Olympics on tv...

So very happy you like your glaucoma specialist - this is what we all want, docs we can work with.

GPs are not equipped to deal with us, unfortunately, despite being expected to gatekeeper the NHS now. How they dare to prescribe eyedrops without examining the eyes and training is beyond me. So a good helpful local optometrist can refer us where we need to be in the hospital service. We have an excellent independent local triage and treatment service http://www.thepracticeplc.com doing all the Primary Care Trust business, with optometrists, ophthalmology consultants, surgeons, so if anyone finds anything like them locally, heaven.

Dr Google can tell you more about keratoconus if you're interested.

Keep us posted! Especially whether Rppnj and Abbygirl and Unicorn's suggestions to the regime are working, especially whether the flooding under the upper eyelid technique works with allergies.

[unicorn]

Hello Karjade & Littlemermaid

It is indeed a jungle out there when it comes to doc-shopping or even optometrist shopping. I'm still very early in the journey. Today at 2pm I have an appointment with my local optometrist http://www.peterivins.co.uk/ who have a service called 'Tear film analysis and dry eye treatment advice'. Both the optometrists who work there are also involved in teaching and seem to know their way around the hospital system locally.
I am keeping my fingers crossed for my appointment going well this afternoon - will report back.
Karjade I am happy to hear you're having some good days. I had a good day yesterday! - maybe I am making progress.

[unicorn]

Karjade, maybe I don't have blepharitis! I'm a bit confused about it all, anyway I've opened a new thread to discuss it.
http://www.dryeyezone.com/talk/showt...4549#post74549

I like the look of this guy in Leicester that Littlemermaid has found. If he is anything like as good as the optometrist I went to today you will be in good hands. It is a long way to travel but if you can get someone to go with you (don't drive, in case of a dilated eye exam), it would be well worth considering. You might not have to pay depending on if they can claim back the cost of the appointment from the NHS since you are already receiving hospital treatment (this was the case with me, today).

[Karjade]

Hi Littlemermaid and Unicorn. I have made an appointment with an optometrist www.sheinman.com which is a very good optician in Northampton. They have an optometrist that specialises in dry eye and bletharitis and even hold a dry eye clinic which you have to pay £40 per session. I have got the appointment at 9.00 am tomorrow and will report back. Maybe I will be as lucky as you unicorn and not have blepharitis but doubt it very much. You were really lucky to have found this man - if I do not get anywhere tomorrow littlemermaid I will definitely try Anthony Clarke in Leicester as I have nothing to lose but everything to gain. I am not being charged for my eye test as she said if I feel my eyesight has deteriorated in the last few months I will not have to pay which it has. I have only used the heat pad once today as my eyesight is blurry and I think maybe using them twice a day is not a good idea. Unicorn I am so pleased for you - can they cure what you have? Bletharitis cannot be cured only controlled - but I would be happy if I could just control it!

[unicorn]

Excellent news Karjade and I will be thinking of you tomorrow morning - good luck! I really hope you find it useful.

I have no idea if what I have is 'curable' - since I don't really know what I have, just that there is inflammation there for some reason. If I am very lucky it may go away with this course of steroids. If I'm unlucky it will return and then it is really anyone's guess as to where to go from there.

Blepharitis tends to come and go, as far as I know, and it is certainly possible to control it well, so don't give up hope - and there is every chance that the optometrist you are seeing tomorrow will give you excellent advice and you can continue to go there for monitoring.

[Karjade]

Well I had a very successful visit today - I was with her for about an hour and she did a thorough check. I have got bletharitis but my left eye is not dry and the right eye has patches of dryness. She said I am doing all the right things and she showed me how to massage my eyes and told me a very good dry eye drop to use is Theoloz made by Spectrum Thea. It is quite expensive - the cheapest I found is on Amazon and e-bay £14.99 including postage. My eye pressure was brilliant at 13 the range being 12 - 25. She talked about prisms in my eye which go one way and should go the other and said glasses could correct this. I have bought a pair of glasses with these prism things in at an expdensive price of £197 - never paid that much for glasses usually £89 for two pairs from Tesco!! I am going back in 6 months - I have to wait for these glasses for 3 weeks as they have to be specially made. So all in all I was very pleased xx

[littlemermaid]

Karjade, What a relief! So glad you've found someone you like to help look after your eyes. Glasses are expensive with the specialist lenses but I don't regret forking out for varifocals to get good vision again. I like Spectrum Thea - we've used Butterflies Healthcare to order a few things, which is a nice little shop in Banbury - Thealoz is £11.99 but postage extra http://www.spectrum-thea.co.uk/Apps/...nt.aspx?fid=39

Isn't that great news about your eye pressures? I would think you could nip back to her NHS if you've got any eyesight worries, and certainly call in for quick advice between patients now you're on her list.

Maybe have a look at the NHS entitlements for someone diagnosed with glaucoma and check the age and income criteria for NHS sight test in optometrist in co-management of a condition with a hospital, and NHS payment towards glasses (our optician filled out the form and we got money off glasses because she is being treated ongoing in a hospital eye clinic) http://www.nhs.uk/NHSEngland/Healthc...tioncosts.aspx, it's forms HC11 and HC12 in downloads on the right http://www.nhs.uk/NHSEngland/Healthc...april-2012.pdf

[Karjade]

Littlemermaid. I have just ordered Theoloz from Amazon - it was £14.99 including postage. It is worth a try but I doubt it will be on the NHS list. I will not be eligible for any help on NHS as I do not fall into any of the criteria - however I just want to find the right help and the right products and I will be happy. I was so pleased with my eye pressure - maybe one day I will be able to come off the glaucoma drops if it still keeps going down. Now I am off the Flixonase nasal spray which I am sure caused the glaucoma by damaging the optic nerve nothing might get any worse. After researching Flixonase lots of web sites say long term use can cause glaucoma but how do you prove it. I have made an appointment with my doctor for a medication review because I have also got mild asthma - I want to get off all steroids. If I knew then what I know now I would never have touched any steroids - even the asthma ones go round the body. I am definitely anti-steroids now. I feel more able to cope today and hopeful and I thank you and Unicorn from the bottom of my heart for telling me about Optometrists xxx

[unicorn]

Karjade that is great news! I'm so pleased your appointment went well. I hope you can go back to this optometrist for future checks as and when necessary - it's good to have found someone you can 'work with' and now she knows all your history etc future treatment should be easier. It is a shame you are not eligible for help on the NHS, but like you say as long as you're getting the help you need, it's worth it. I think perhaps that as I live in Scotland the funding is different - I've not had to pay for either of my appointments at the optometrist, presumably as I'm on the hospital treatment list for management of the same condition.
Unfortunately I am having to be treated with steroid drops at the moment and obviously I have strong concerns about glaucoma, but am going back for pressure monitoring soon and fingers crossed I won't have to be on these drops for a long time.
Hope your new glasses help as well! xx