Feeling hopeless and scared....

[littlemermaid]

Yes, we have 'rosacea' hypersensitivity type IV as Spmcc with reactions especially to oral meds, also topicals, and everyday chemical products even tap water.

Best to have your meds tracked by a regular Consulting Pharmacist who knowns you so that they can pick up GP errors or contraindications. Pharmacists have better access to side-effect databases and trends, and report back to national databases and NHS. I suspect some med reactions can be more long term on the immune system than an average doc realises, or take a while to rectify, so we need to think carefully what we're taking, as Spmcc says. Cymbalta lists dryness as a primary reported side effect on the prescription sheet insert.

With rosacea (see NHS website), any doc should ask before prescribing if you have had a systemic or topical reaction in the past. In Ophthalmology, they should ask before using dilating drops or fluorescein dye.

Your Ophthalmologist continues to advise using warm compress with rosacea eye inflammation that makes it worse for days. We've always done better with a more observant and thoughtful approach eg docs who look after people with difficult ongoing inflammatory processes in tertiary referral. Obviously some meds make things worse, and a doc needs to be sensitive to what brings about healing and remission.

With rosacea, if you haven't already, review your environment and bathroom and cleaning products and go allergy and perfume-free, and look at diet triggers as everyone suggests, eating and drinking healthy, plenty water.

We still like Dr Latkany's book 'Dry Eye Remedy' for sensible reassurance, even after all these years.

[NotADryEye]

The opth didn't say anything about fibrous tissue. Warm compresses seem to make my eyelids very red and sore for a day or two afterwards and I don't do them very hot at all. I believe this is because of the rosacea.

I haven't been tested for demodex, my opth laughed and said i've obviously done some reading but that they wouldn't be causing the problem. I haven't had any testing for bacteria.

Some days my eyes are sore/dry but I can manage to work (just about) but other days I have to keep them closed most of the day. I haven't worked out what is making them worse and I keep being told at the eye clinic that MGD/dry eye shouldn't be causing me this much pain despite a Schimmer's of 0 and 1 and a TBUT of 3 to 4 seconds.

Your post is perhaps the most telling of what is going on. The specialist laughs and comments (disparagingly?) about the reading you have done. Perhaps the specialist would not laugh quite so much if he/she were keeping up with recent findings. Here is a link to the US government site that compiles all peer reviewed articles on health issues from around the world. I searched on demodex and Tseng (the last name of the author). There are 10 articles: http://www.ncbi.nlm.nih.gov/pubmed/?term=demodex+tseng
Note the connection between demodex and rosacea. I have rosacea, have tested positive for demodex, am treating with Cliradex and am seeing positive results.

When they do the Schirmer test do they put strips in your eyes once, or more than once? Do they tickle the inside of your nose?

If your glands are plugged and the meibum isn't flowing TBUT would be very low. When fibrous tissue blocks the openings of the meibomium glands the plugs need to be opened.

Demodex can contribute to blocked meibomian glands.

[littlemermaid]

I think there's something important here, especially with depression ~ that we are seeking positives and stay away from negatives.

Something Rebecca wrote in Dryeyezone doc-wrangling suggestions helped me all these years ~ that we can learn something useful in every encounter. That helped us make the best of opportunities we had and to ask interesting questions starting 'what do you think?' True, I might be thinking 'no' 'yes' 'maybe' in my head, but we are all here to learn together and it works.

It's a very special doc who will ask what you know or think, but most of them are fine with 'shall I leave this paper here?' or PubMed or Medscape. And until they all get communication skills, we have to report on consultation with other specialists anyway.

Lizlou's doc will have to get up to speed on rosacea or demodex to treat these eye cornea patients and this reminds me of the next best advice we ever got ~ find a doc who's interested in the condition you've got.

I'm finding they are pretty much over the internet thing now and we often get a good conversation. Professor Google, our rheumatologist calls him.

[lizlou29]

I do wonder how up to date with new and emerging treatments the opths I've seen are. I was told to use baby shampoo by one then told by another that that is out of date, one had not heard of PROSE. Also just some of them being plain wrong, like being told I just have a bit of bleph and dryness isn't an issue then being told I have severely dry eyes. This contributes to my depression/ anxiety as I've had no consistency and someone I feel I can work with to improve my condition. I have also been told by two opths I must feel pain more than others. How do they know? Sorry to rant but I hate not having a definitive diagnosis.

I am with the help of my mum researching who to go and see privately asap because I'm in more pain by the day and my quality of life is deteriorating so I feel I owe it to myself to at least try and see if there is someone out there who can help give me a better understanding of my condition and at least have some compassion. I know, I'm asking too much!

[Guest]

I think there's something important here, especially with depression ~ that we are seeking positives and stay away from negatives.

Something Rebecca wrote in Dryeyezone doc-wrangling suggestions helped me all these years ~ that we can learn something useful in every encounter. That helped us make the best of opportunities we had and to ask interesting questions starting 'what do you think?' True, I might be thinking 'no' 'yes' 'maybe' in my head, but we are all here to learn together and it works.

It's a very special doc who will ask what you know or think, but most of them are fine with 'shall I leave this paper here?' or PubMed or Medscape. And until they all get communication skills, we have to report on consultation with other specialists anyway.

Lizlou's doc will have to get up to speed on rosacea or demodex to treat these eye cornea patients and this reminds me of the next best advice we ever got ~ find a doc who's interested in the condition you've got.

I'm finding they are pretty much over the internet thing now and we often get a good conversation. Professor Google, our rheumatologist calls him.

Very well said, as usual!

[rm14dp]

Hello lizlou 29, I to am in the UK and can relate to your pain. I have been trawling round consultants and eye clinics for 18 months - Systane drops, steroid eye drops everything preservative free, Doxycycline, etc etc and still constant pain . Last month at the end of my tether I asked my GP for a referral to Moorfields, and I had my first appt last week. They are arranging tests and scans that no one has suggested in the last 18months, and a referral to a pain clinic. If you can try the Moorfields route, at least I feel I am getting somewhere now. Good luck.

[lizlou29]

rm14dp - I paid for a private consultation at Moorfields this week. She was very good and explained things more thoroughly than anyone I'd seen through the NHS. She has also responded to a couple of emails since (she said she'd be happy to do this). She asked for blood tests results to be sent to her and I've just had some back today showing I'm severely deficient in Vitamin D and have an underactive thyroid. I'm not sure if either of these have an impact on the eyes but I'll be starting meds soon. My ANA and rheumatoid factor came back negative plus I have no dry mouth or joint pain so they don't think it's Sjogren's. I am also asking to be referred to pain clinic so would be interested to hear your experience, really hope they can help you.

[Guest]

She asked for blood tests results to be sent to her and I've just had some back today showing I'm severely deficient in Vitamin D and have an underactive thyroid. I'm not sure if either of these have an impact on the eyes but I'll be starting meds soon.

Underactive thyroid can absolutely cause and/or contribute to dry eye. So that's good news in a way, since once you start meds to counteract your underactive thyroid, it may help your eyes improve!

[rm14dp]

rm14dp - I paid for a private consultation at Moorfields this week. She was very good and explained things more thoroughly than anyone I'd seen through the NHS. She has also responded to a couple of emails since (she said she'd be happy to do this). She asked for blood tests results to be sent to her and I've just had some back today showing I'm severely deficient in Vitamin D and have an underactive thyroid. I'm not sure if either of these have an impact on the eyes but I'll be starting meds soon. My ANA and rheumatoid factor came back negative plus I have no dry mouth or joint pain so they don't think it's Sjogren's. I am also asking to be referred to pain clinic so would be interested to hear your experience, really hope they can help you.

Hello, good to hear you had help from Moorfields. I to have an underactive Thyroid for which I take daily Thyroxin. Will update when I have pain clinic appt date. ( MRI next week to check nerve condition). This is a marathon not a sprint, just stick with it.

[unicorn]

Hi Lizlou29

I haven't posted here in a very long time, but I read your messages and felt compelled to reply, as I can relate to your story so much.

I also have rosacea and ocular rosacea and have had a terrible time of it with doctors and ophthalmologists - at my last hospital appointment I was told that 'people who are emotionally sensitive also tend to be physically sensitive' (eg to meds, eye drops) - and basically left to manage my condition myself.

I went into a very deep depression soon after this, in fact I was suicidal. (This is also why I've not been around here lately!). I was referred to the psychiatric services and put on Mirtazapine 30mg which I couldn't tolerate (although it didn't adversely affect my eyes). I cut the dose to a tiny 7.5mg (after discussion with the docs) and it helps me sleep well, so I am still taking it.

I have a hard time explaining to the psychiatrist how much I suffer with my eyes and how it has affected my life - I barely go out any more as I don't want to be in pain: I can manage my symptoms at home but they get very much worse when I'm in 'challenging' environments. I have finally (6 months down the line) been referred for counselling/psychotherapy and am visited once a month by the community psychiatric nurse. Things are slowly improving (mentally!)- eyes not improving but maybe one day... Crying is so hard on my eyes, if I cry for even just 10 mins I will feel it for the next 2-3 days. If you can find ways, whatever they are, to try and reduce the crying I am sure it will help your poor eyes. I also keep a rice baggy in the freezer and it is very soothing when my eyes are burning.

If you would like to send me a private message then please do so - I will be thinking of you. Big hug xx

[LaDiva]

Hi lizlou,
Really sorry you are having such a hard time. It is hard for others who have never had dry eye to truly appreciate how it feels and how it impacts the quality of our lives. Dry eye makes us feel sick and run down. It affects the body, mind and spirit. I have ocular Rosacea, MGD and aqueous deficiency. (It is hard enough to have them, but spelling them is just as hard! ) Diet has made a big difference for me. Some real things to watch are sugar, and processed foods. I also stick to olive oil and coconut oil for cooking. Milk products are off the food list as well. Everyone has different triggers, but if you cut foods that are known to cause inflammation (sugar) that is a great place to start. Yes, crying causes inflammation, but I do not recommend you quit crying, because then you bottle up emotions that need to be let out. Maybe be aware that crying is not helpful to your eyes, but if you need to let go, I'd do it. Strangely, warm compresses help me much more than cold, and bring inflammation down quickly. Others do not have the same reaction, so again it is an individual thing. I take low dose lorazepam at night, or I don't sleep either. It is said to cause dryness, but doesn't bother me. Goggles and sealed sunglasses help. Plugs help. Rest helps. Tranquillity helps. Consider finding a different counselor. It sometimes takes a couple of tries to find a good fit. They are supposed to help you feel better, not worse! Finally, the more junk I pour in my eyes, the worse I feel. I didn't notice that any of the medications made much of a difference one way or the other, but again, we are all different. Best of luck to you. I have been like this for over three years, and have slowly improved. Still not where I would like to be, but I am much better, and am sure that with time, the same will happen for you. Think goggles.

[littlemermaid]

http://www.dryeyesmedical.com/treatments.aspx Moorfields Eye Hospital's escalation of dry eye treatments. So much good experience here in this thread. Scleral lenses and autologous serum are available in specialist centre eye clinics in tertiary hospitals. Difficult to know why people are not being referred on when local help is exhausted, maybe it's the current NHS confusion about what's available nationally and what's expected of hospital eye clinics. http://www.nhs.uk/Conditions/Dry-eye...Treatment.aspx

Unicorn, have you been able to use wraparounds or moisture chamber goggles? do you have a specialist eye doc you like to work with?

[unicorn]

Littlemermaid I haven't used wraparounds or moisture chamber goggles although considering getting Onion goggles for housework (cleaning/cooking) as both of these set me off. I often feel much better outside in the fresh air (it's mostly cool & humid here).

I haven't found anyone other than my local optometrist to help me with this. He is nice but pretty stumped on this- I'm currently on week 8 of a 12-week course of Doxy (100mg) with no improvement. He's been suggesting topical anti-allergy drops but I think this is silly. I dearly wish I had an ophth to work with but I can't afford to pay to see someone privately only to find they're as disinterested as the NHS ones.

LaDiva- yes crying can be necessary, even helpful, to vent emotions. Bottling it all up is so destructive. But it's a tough one - my eyes get so, so raw and painful for ages after crying it just doesn't seem worth it. My psychiatrist's suggested writing things down (and then tearing it up) to get these negative thoughts/emotions out, and that's something I might try.

[littlemermaid]

Unicorn ~ do you want to post up your region again? someone might have a supportive NHS doc recommendation. It's good to stay in follow-up unless you're confident about getting access again. We've found a huge difference between docs even in the same corridor working the same clinic. A nice young informed Registrar or research fellow might come along any day, or they might get funding for specialising, or you might get access to other opportunities eg endo testing. Sometimes they are just waiting until the grumpy old consultant is absent so they can have a conversation with you and be available for questions.

So much good experience and ideas from the others to make this better for you. I would think your kind optometrist might help with sealed wraparounds at least because these are easily available in mainstream opticians now. Thank goodness it's Spring, just about. A bit of vit D and warmth and fresh air is making us all feel a bit better and more like coping. Helpful that Lizlou was found very vit D deficient and can supplement for that and is in management for thyroid.

[unicorn]

Thank you. I am in the west of Scotland (Glasgow) but willing to travel within reason. I will look into sealed wraparounds but I imagine they will be horribly expensive in my prescription!