Blepharitis for 3 years

[unicorn]

Karjade I found that using Blephasol etc irritated my eyes, so now I just use boiled cooled water to clean them. Have you tried this? Also, from what you said it sounds like you clean them before the warm compress - is that right? As far as I understand, you should do the warm compress first, then gently massage the lids to express the oil, then finally clean them. (Please feel free to correct me, anyone, if I'm wrong!)

I am trying to follow the 'Home Eye Spa' routine as described in Dr Latkany's book as closely as possible (although I don't rinse out the eyes with artificial tears).

[Karjade]

You are right unicorn I have been cleaning them before the heat pads and only just realised this is the wrong way round. I also ordered Dr Latkany's book from Amazon because I think it was you that recommended it and this is when I looked at his home eye span routine and realised that I was doing it wrong. I tried this routine yesterday with the heat pads and used cotton buds to clean my eyes and poured two dry eye capsules of Clinitas soothe and had a terrible day after that as if I was looking through a mist. I did not dare do it again today so I put the heat pad on, massage my eyes with my finger and then cleaned them. I think rppnj is right - I am perhaps overdoing things and irritating my eyes even more. I do get allergies because we live near lots of trees and I am allergic to tree pollens and plants and also wheat - I had an allergy test at the ENT Dept at the hospital. I am finding the book very easy and helpful to read but I will take his advice with caution because I do tend to overdo things and hope it gets better quicker only to aggravate things even more. I am also impatient and expect things to get better straightaway which I am now realising does not happen. rppnj - I dare not do nothing and leave my eyes alone as I am on glaucoma drops and these I feel contribute to my Blepharitis. My consultant told me to STOP Flixonase which I was on for six years which contains steroid as this could have damaged my eyes - great they give you one thing for sinus which causes other problems. Thank you both.

[unicorn]

Karjade perhaps you could do the warm compress, a gentle massage then just gently wipe the eyes with boiled water left to cool to roughly body temperature? It may be the artificial tears that are bothering you.

If you have allergies it may also be that the heat is inflaming your eyes further, in which case it might be better to leave out the warm compress, just do gentle lid massage and cleaning with boiled cooled water. It is also quite helpful, I've found, to do a cold compress when the eyes are inflamed. I put my rice baggy thing in the freezer for a few hours and this works well to reduce redness, it also feels quite refreshing.

I am quite new to all this, so anyone with more experience please do add your thoughts!

[Karjade]

My eyes are getting worse by the day - today I was very anxious over it all!! Am I doing the hot compress too much - I am doing it twice a day for ten minutes each. Dr Latkany's book said to do it three times a week for three minutes. I am sure I have got allergies but my eyes do not itch. Today they are sore underneath on top and are slightly bloodshot - I look awful and I am now coming to the conclusion I am doing too much to aggravate my eyes. I will try cold compress to see if this helps. Unicorn have you got Blepharitis? I know I am not coping well with this at all - my husband is tearing his hair out with me!! I just want the correct way of doing everything, in what order and how many times day/week? Everybody seems to be really coping and I am not and daily my eyes seem to be getting worse. I was not told at the hospital the correct way and my doctor has not got a clue. I am sorry to be a pain but I need so much reassurance that I am doing it correctly. I would appreciate any comments - thanks so much.

[unicorn]

Hi Karjade. I can really relate to your struggle! I too have plenty of moments when I feel like it's all getting worse and I just don't know what to do. I think part of the problem is there's no one-size-fits-all 'correct way' of doing things, it really depends on how your eyes respond to various treatments and working out what's best for you.

Yes, I have posterior blepharitis and quite possibly some allergies going on, although it's hard to get a proper diagnosis. The most helpful consultation I've had so far was actually at an optometrist (optician) who specialised in treating dry eye. He was able to give me some very good advice. I am wondering if you might be able to find someone like this local to you? Can you perhaps phone around local opticians (someone other than the high street chains) to see if they offer a specialised dry eye treatment advice service?

The one thing I was told which you may find relates to your situation is that the treatment for posterior blepharitis is actually the direct opposite to the treatment for allergies, ie warm compresses will help the blepharitis but will be inflaming the allergy, for which cold compresses are best. It's really hard to know what's best in this situation, obviously. Perhaps you need to give your eyes a rest, if that's possible. I do think you might find a cold compress helpful but again just try to take it easy and not overdo anything. Maybe try a day or two without the warm compresses just to see how you get on? Please remember I am not really qualified to give advice - just a newbie like yourself! - I do hope you can find a knowledgeable and sympathetic optician who can help you.

How are you doing your compresses? Do you use a rice or flaxseed bag? I got mine from www.wheatybags.co.uk - it's a nice product. You can heat it in the microwave or cool it in the freezer.

You're not alone in struggling with this, it's just one day at a time and try to keep a note of what helps/what doesn't. Perhaps some sort of 'eye diary'? to help you remember what you did and how your eyes felt?

[littlemermaid]

Karjade, I'm wondering if the glaucoma consultant can get some preservative-free eyedrops compounded for you? Moorfields might do some and I've noticed there are some new PF ones in the US. We were also wondering if she could adjust the treatment to reduce eyedrops - maybe use a diuretic if there's no risk? I'm finding that things are better when we have docs we can talk to and work with (I know this isn't easy to find) and that if we turn up again worse they can adjust the regime according to what's happening - did someone tell you to do a compress 2/day with this inflammation? (Dr L's advice and Unicorn and Rppnj sounds better, doesn't it) Packed off for 3m trial and error isn't enough when it's making things worse and the patient needs help.

It looks like there might be opportunities to get advice locally on what's actually happening and some current treatment recommendations - you might feel better informed about glaucoma treatment options and more in control of managing the dry eye and allergic inflammation symptoms (otherise, there's Oxford Eye Clinic or Moorfields consultants). As far as emotional support goes, I like to internet shop for an expert doc for some state-of-the-art advice, plus, as Unicorn says, a decent dry eye optometrist for backup. Then I feel better.

What do you think of this bloke (am I in the right town even)? http://www.prydal.co.uk/conditions.htm

And, especially, this bloke? http://uk.linkedin.com/pub/anthony-c...lauc/32/7b/235 - he is visiting optometrist in 2 local practices - he looks clued up, doesn't he, regional specialist in glaucoma plus dry eye/lid margin disorders - I wouldn't hesitate to ask his advice. Bonus, he's teaching and he knows his way round the hospital services.

If you need help finding your way around the local NHS, eg about getting seen again when treatment is making things worse, try Patient Liaison Service at the hospital or in the Primary Care Trust. They can be very supportive but practical.

First job is to 'phone the Eye Clinic or consultant's office and tell them it's worsening on their treatment and ask to be seen again.

What excellent experience above from Rppnj.

[Karjade]

Thank you both of you. I have cut down the heat compresses (Unicorn I did purchase these from wheatybags) to five minutes twice a day, then massage my eyes and then use boiled water to clean them. I am using Systane Preservative Free at the moment - which are quite big phials and give me five drops in both eyes. My glaucoma consultant trained at Moorfields so I think she knows what she is talking about. We live near lots of trees so tree pollen is definitely affecting me - I am taking one cetirizine anti-histamine a day - according to Dr L's book this can dry eyes more but I need to take one. My eyes are stinging a lot and I am not sure how to cope with this. I will definitely look around for an optician who is an expert on dry eyes - however my eyes do not seem quite as dry now since doing all this treatment. I am very sensitive to light and get slightly blurred vision but I will persevere and a diary is a very good idea. My moods are very up and down because of the anxiety of it all but I have had a very bad health year so far. My glaucoma drops are Xylatan and they seem to be keeping the pressure down but glaucoma is another subject and my optic nerve is damaged but I dare not dwell on this too much. I am learning about things every day and thank you all for all your help and support xx

[Karjade]

Microwave packed up today and all I was concerned about was not able to use my wheaty bags for my eyes - not about using it for food!! I made my husband stop what he was doing so we could go and buy a new one straightaway - how dedicated am I to getting better!!

[rppnj]

however my eyes do not seem quite as dry now since doing all this treatment...thank you all for all your help and support xx

Hi Karjade, Congratulations! Sounds like things are improving nicely. Just keep on "tweaking" your treatment until you find the correct combination that works best for you. Quick question...have you noticed that your eyes feel 'good' or 'bad' completely at random? I just cannot figure out why my eyes feel 'good' on some days and 'bad' on other days. BTW...I'm very happy that my suggestions have been helpful to you. Kindest regards, rppnj

[Karjade]

rppnj Yes that is definitely so. Yesterday my eyes felt "normal" and I just wished I was like this every day but I know it does not last. Today I have blurry vision, stinging eyes and they feel dry - however I have taken the dogs out today for two long walks and this may be allergies. Do you take antihistamine tablets daily for allergies because I have read that these can make your eyes drier because they dry your sinuses and hence dry the eyes. I try not to take them daily but when my eyes sting I don't know what else to do - do your eyes sting and if so what do you do? The weather definitely has something to do with how my eyes are - the pollen, heat, etc. Regards Karjade

[Karjade]

Did a stupid thing yesterday and went swimming at the gym - the first time since my eyes have been bad. When I came home my eyes were sore, vision blurred, dry and itchy. I have had the worst day ever today and don't know what to do with myself. It must have been chlorine in the water even though I did not get my eyes wet - this is another thing I cannot do. I don't know whether goggles would have helped but I just did not think!

[unicorn]

Very sorry to hear that, Karjade. I hope you won't necessarily write swimming off completely. I'm sure goggles would help somewhat. Were you exposed to anything else? different shampoo maybe? Chlorine can be very aggravating to even healthy eyes so it's no wonder it made your eyes sore. Are there other sports you could do instead, if goggles don't help?

It's hard when you are doing everything you can, and yet you still have days like that. Have you managed to find a local optician yet who can maybe help you? And what are you doing treatment-wise? I am having good(ish) days and bad days with my eyes. Sometimes I'll change something (for example I changed my hand soap last weekend), they'll seem to get a lot better for a day or two, then just when I think I've cracked it they go back to square one. It's very disheartening.

By the way how did you get on at your CBT session, if you don't mind me asking?

[Karjade]

Hi Unicorn. I daren't go back to the swimming pool - I have had a really bad few days and the anxiety has returned. I have been put on the waiting list for CBT after I saw a support worker. She has recommended I read How to Master Anxiety by Joe Griffin until my appointment. I will go back to the gym to do exercise, yoga or pilates but never the pool again! I am doing everything I have been told to do but like you I have goodish days and bad days but I feel I can't live with this - when do you accept it is never going to go away? If I could stop the glaucoma drops (which I can't) maybe it would improve but who knows. I am going back to see my glaucoma specialist in September which is three months since I last saw her when she diagnosed posterior bletharitis. I have a very bad cold and cough at the moment and my sinuses and ears are bad so maybe this is making my eyes worse. How long have you had bletharitis as you seem to be coping so much better than I am?

[unicorn]

Hi Karjade. I'm really sorry to hear you are still suffering so much. It's good that along with the bad days you are also having some good ones - have you noticed any pattern? As in, is there anything you do differently that seems to help?

Unfortunately, although I've been keeping a diary, my good(ish!) days are seemingly random (and also, sadly, outnumbered by bad days). I will think I've made some kind of breakthrough (like, my eyes got better when I stopped using Blephasol -for about two days, then worse again; also, when I stopped using my Carex handsoap, then worse again, despite still not using the Blephasol or Carex).

It is kind of you to say I seem to be coping - to be honest I really don't feel like I am, at times - it all gets too much for me and I feel, like you, I can't live with it. I'm not sure exactly how long I have had blepharitis - probably undiagnosed for many years, although my symptoms really only started to get bad this April. It is very frustrating having to wait so long for appointments as well - and sometimes even when you have the appointment, you don't get any further (the consultant ophthalmologist I saw after a 3 month wait was worse than useless). At times like these you feel like it's never going to get any better and no-one out there is going to be able to help you, and it's overwhelmingly depressing.

I'm very happy to hear that you will continue to go back to the gym for other activities - yoga could be very helpful for you, as well as good exercise it is very relaxing and helps with anxiety, in my experience. I hope you won't have to wait too much longer before your CBT sessions start, but perhaps that book will be useful for you in the meantime - there are so many books out there. I have one called Overcoming Anxiety by Helen Kennerley which I dip into now and again, although when you're feeling really bad it's hard to take it in.

I really hope you have a good appointment with your glaucoma specialist next month and that you can make sure she knows just how bad your eyes feel with the drops you're on.

[Karjade]

Hi unicorn. I have just phoned for an appointment with the Wellbeing Team for CBT training and they offered me their first appointment - 23 October!! I have just ordered the book off Amazon for £6.99 including postage and I will read that. Truthfully, I am expecting them to wave a magic wand and I know that is not going to happen. I saw my Glaucoma Specialist privately costing £130 and she was the only one that diagnosed bletharitis - I had been going to the Eye Department on NHS for 8 months and they just kept telling me I had dry eyes but none of the drops were working. I even saw my NHS consultant privately costing £120 and he did not diagnose it but just referred me to the Glaucoma Specialist. I am seeing her privately again in September which are referred to as follow up visits costing £80 but it is worth it. She was trained at Moorfields and looks at the front of the eye as well as the back - most ophthalmologists only concentrate at the back of the eye and that was why it was missed. I will stay with the NHS but the waiting lists for appointments are months and then quite often they are cancelled and re-booked in another month or more. I will let you know how I am getting on with the book when I receive it.