Feeling hopeless and scared....

[littlemermaid]

Hello Unicorn, D&A/Boots are telling me they can do prescription in curved lenses where the bit we look through is flat enough. Regina has stuck things on the back of hers to get a working seal. Dryeyezone has some ideas. We're going with the Mindfulness techniques here so we're keeping an open mind. LM has worn her prescription swimming goggles if needed

Have you got it all straight where to go if you need help with a flareup, eg emergency hospital Eye Clinic? preferably somewhere with your Medical Records where they know your eye history? some of the emergency clinic docs we've seen have been really kind and helpful and we wouldn't otherwise have met them because they're on rota.

[rppnj]

I only joined the Dry Eye Zone yesterday and hate to write such a negative post but I'm really not coping well and I'm losing the hope I had that things would get better.

I have rosacea, ocular rosacea and with it MGD and aqueous deficiency. I was coping fairly well with my condition until I started to have insomnia last year and have been on various sleeping pills and anti-depressants that had a negative effect on my eyes. I am currently taking Seroquel for sleep and it is having a definite drying effect on my eyes and skin but without it I can't sleep and this worsens my depression. I know not everyone experiences increased dryness from such medications so I guess I am just one of the unlucky ones.

I am 29 and me and my boyfriend were planning to buy a house together this year and start a family in the next couple of years but this seems absoloutely impossible to me now. If I'm not at work in pain all day I'm sat at home in pain all day just waiting for bedtime when at least with the help of medication I can escape the pain and fear for a few hours. In the morning I wake up in pain knowing i've got to somehow make it through another day.

My family have been so supportive but I know how upset they are that they can't do more to help. I have had less and less contact with my friends as I find it hard not to resent their carefree lives and have difficulty in responding politely when they say things like "you just need a holiday" or "lets have a night out to cheer you up" when going to my local shop to get food is an achievement. My boyfriend is amazing but I do feel that maybe it is best for him if we break up as I don't feel he'll have the life that he deserves whilst he is with me.

The receptionists at my local eye hospital probably recognise my voice now and I see a different opthamologist every time I go and a few days ago was told that I've tried everything and although it is frustrating I just have to get on with things. I have punctal plugs in the upper and lower tear ducts and my left eye waters continuously. They haven't helped but I'm scared to have them taken out in case the pain gets worse.

I am due to see a psychiatrist tomorrow for the first time but having spoken to him by phone he has no understanding of the pain I am in (why would he) and he said if my eyes are bothering me that much to use more eye drops (I'm sure we've all been told this at some point).

I have not made any plans to end my life, only because I couldn't do it to my family but they know it is in my thoughts. When I am in extreme pain I call up the eye clinic and they usually give me an appointment within a week but having been told that there is not much more they can do where am I meant to go from here?

Hi Littlemermaid,

Please do not lose hope. I've had Blepharitis for more than four years now with no end in sight. After much trial and error and after not having one treatment by any of the three Ophthalmologists that I've been to accomplish anything to alleviate my symptoms, I finally decided to figure it out myself and take control of my own treatment in cooperation with my current Doctor.

The first thing that I determined on my own was that my Blepharitis symptoms were being triggered by allergies; especially during tree pollen season. I hired a lawn service so that I can stay indoors during April / May, the heart of the tree pollen season. I then noticed a significant difference in the severity of my Blepharitis.

Also, in early April, I underwent the Lipiflow Treatment at the Wills Eye Institute in Philadelphia, PA. After the treatment I was told to administer Hot Packs, Eye Hygiene Wipes and Tobradex ST (in that order). The Tobradex was to be used 3X/day for one week, then 2X/day for one week, then 1X/day for the third week. I followed through on the hot packs, cleaning, Tobradex ST and especially staying indoors during the tree pollen season. After more than four years, I finally have no symptoms while indoors in my house.

I then went to an Allergist, who tested me for various allergens. I was allergic to Maple Tree Pollen and outdoor mold (the mold being the worst) so cutting the lawn and landscaping was definitely contributing to my symptoms. So far, so good. I'm still sensitive to outdoor allergens and irritants in general but compared to the previous four years, I'm the best I've ever been.

Littlemermaid, I thought that I would have to live the rest of my life in 'dry eye hell' but now there is light at the end of the tunnel! You may wish to search / review my previous posts (not sure how to do that). They will offer a nice summary of my history 'to date'.

Kindest regards,
rppnj

[Sulindac]

I had the lower punctal plugs inserted 6 weeks ago, they haven't helped in terms of comfort. I was hesitant as I have heard that having 4 plugs can keep the inflammatory cells on the eye surface, I asked the ophthalmologist and she turned away so I asked again and she said they are for dryness so no real help there. Any thoughts on this?

You don't have upper and lower plugs?... I have heard a lot of people say that the biggest difference was having the upper plug put in. If you don't have both then don't waste any more time. There is no harm in trying silicone ones can just be taken out if you dont like them. HUUUUGEEEE difference!

[Guest]

You don't have upper and lower plugs?... I have heard a lot of people say that the biggest difference was having the upper plug put in. If you don't have both then don't waste any more time. There is no harm in trying silicone ones can just be taken out if you dont like them. HUUUUGEEEE difference!

Same here... enormous difference with all 4 puncta plugged with permanent plugs (or 2 with cautery, and 2 plugs in my case) - 4 temp plugs didn't even provide a huge difference, so permanent is the way to go. And like Sulindac says, the umbrella-style silicone plugs can be removed if it's no good for you.

[lizlou29]

Oh I made a mistake there. I have all four plugged. This time last year I had just the lower two and things were pretty much fine. Then last Feb things got a hell of a lot worse and I had the uppers put in a few months ago but it hasn't helped at all. I thought things had got worse because of the medication I was on but I came off it two and a half weeks ago and the last few days have been hell. Corneas are red when normally it's only the eyelids that are red. Struggling to work now. Very despondent as coming off the medication (for sleep) was one of the hardest things I have done and I hoped my eyes would benefit. I am sleeping better now but eyes are extremely painful.

[littlemermaid]

Lizlou, do you suspect allergies too, like the very kind Rppnj?

[lizlou29]

Well I've had allergy testing in the past, negative for everything. I don't use much make up and keep my flat very clean and nothing changes if I stay at my boyfriends or parents' house so I don't think it's allergies. Also I don't get any other allergy like symptoms. It all flared up this year when I had severe insomnia and started taking meds to help. I thought the meds and stress were contributing but now I'm off meds and sleeping better it hasn't improved. I had a saliva test which showed low estrogen levels but normal testosterone and have started bio-identical hormones but no change to my eyes yet. I've felt for the past few years that the condition is partly hormone linked for me as it gets worse around my time of the month.

[littlemermaid]

Just looking back on this thread, we are doing well treating for demodex just using a bit of organic tea tree shampoo in a cup of warm water (1:50) as an eyelid margin scrub. Also a few sensitive tea tree facewashes and moisturisers sometimes. Then stopping to once/week for a while, keeping in mind TTO can be toxic. it helps to be able to see the eyelid margins on-screen if the Optometrist has a slit-lamp ophthalmoscope camera, which most of the chain Opticians do. With rosacea and chronic bleph, we weren't doing a good enough cleaning job. It looks like bugs proliferate when the person is immune compromised and rosacea sensitive types over react to this with inflammation (PubMed 'ocular rosacea').

[NotADryEye]

Well I've had allergy testing in the past, negative for everything.

Allergy testing is good but no allergy test is truly comprehensive. You could be allergic to something you weren't tested for e.g. demodex mites themselves or just about anything else. Or you could have sensitivities, which allergy tests do not uncover. You may even have food sensitivities that are contributing to MGD which makes a nice environment for what littlemermaid describes.

Also, it's good that you're off the sleep meds and sleeping better. The meds themselves cause dryness and sleep is esssential for cell health in the eyes.

[lizlou29]

LM - I'm still unsure about demodex mites. When I saw a dermatologist she said that they really don't believe that they have anything to do with rosacea and she hasn't seen good results from people trying to treat them. All the opthamologists I've asked about it have dismissed it as well. LM did your daughter have a confirmed diagnosis of demodex or did you realise they must be causing a problem because the tea tree oil was effective?

Thanks NotADryeEye. I'm almost certain starting on meds to help me sleep was what pushed me from the mild/moderate to severe category. The one I had been on the longest was a strong antihistamine and I could almost feel it drying my eyes after I took it but I really needed sleep too! I thought that when I came off it things would improve but they haven't yet. I stopped eating dairy and refined sugar a while back but no difference with the eyes. I know I don't have an allergy to any type of food as I'm sure I'd be sick etc if I did but perhaps an intolerance. Difficult to know as this time last year I could eat anything and my eyes didn't trouble me too much.

[NotADryEye]

LM - I'm still unsure about demodex mites. When I saw a dermatologist she said that they really don't believe that they have anything to do with rosacea and she hasn't seen good results from people trying to treat them. All the opthamologists I've asked about it have dismissed it as well. LM did your daughter have a confirmed diagnosis of demodex or did you realise they must be causing a problem because the tea tree oil was effective?

Thanks NotADryeEye. I'm almost certain starting on meds to help me sleep was what pushed me from the mild/moderate to severe category. The one I had been on the longest was a strong antihistamine and I could almost feel it drying my eyes after I took it but I really needed sleep too! I thought that when I came off it things would improve but they haven't yet. I stopped eating dairy and refined sugar a while back but no difference with the eyes. I know I don't have an allergy to any type of food as I'm sure I'd be sick etc if I did but perhaps an intolerance. Difficult to know as this time last year I could eat anything and my eyes didn't trouble me too much.

Re: Demodex - everyone has them. Some people have more, older people have even more. Dermatologists dismiss demodex because a few years ago there were some inconclusive studies regarding demodex causing rosacea. But, to me, "inconclusive" is not that same as "not." For me treating demodex is helping a lot. But that's me. I'd say that was "conclusive for me."

Antihistimines dry out the mucous membranes and decrease lacrimal gland secretions. It can take time for all of this to resolve. But if it hasn't, and its been months, that means you have something else going on. Have we already asked you about autoimmune diseases? Sjogren's, Hashimoto's, etc?

Allergies to foods and sensitivities to foods are completely different. Allergies can kill you. Sensitivities cause inflamation and then you end up secreting poor meibum The inflamation is not necessarily something that you can see. It's systemic, in your body and in the tiny meibomian glands, invisible to the eye.

Below is a list of the foods that I have sensitivities to, but to which I am not allergic according to allergy tests. I cut all of these foods out for 1 year and have begun adding back some of the low tolerance foods. It is a slow process. I have also eliminated gluten and cruciferous vegetables because of hashimoto's. When you look at this list you'll ask what do I eat. There is plenty of food, but I'm very disciplined and don't eat out any more. However, without food sensitivity testing I never would have been able to figure out which foods to eliminate or avoid.

High Sensitivity/High Intolerance:
Cat fish
Flaxseed
Swiss Chard

Medium Sensitivity/Medium Intolerance:
Basil
Chamomile
Jalapeno Peppers
Leek
Licorice
Mussel
Nectarine
Scallop
Sheep's milk
Wheat
Wild Rice

Low Sensitivity/Low Intolerance:
Acorn Squash
Anchovies
Asparagus
Black Current
Blueberry
Brewer's Yeast
Burssel Sprouts
Buffalo
Canola Oil
Cardamom
Celery
Coffee
Coriander
Crab
Egg Yolk
High Fructose Corn Syrup
Garlic
Grapefruit
Honey
Honeydew Melon
Kiwi
Lima Bean
Malt
Mung bean
Mushroom
Olive
Orange
Parsnip
Peach
Pork
Rice
Romaine Lettuce
Rosemary
Saffron
Sea Bass
Shrimp
Soybean
Squid
Tomatoes
Turmeric
Veal
Venison

[littlemermaid]

Yes, we have had demodex in the follicles and signs on the eyelid margins. I'll send you a PM chat when I get a minute because it's not a fashionable diagnosis over here yet, lol. Has the GP been able to regulate your thyroid?

Please keep positive, Lizlou, and refuse any negative thinking, as the others advise. Switch negative thoughts off and practise the mindfulness techniques. It works. But if there's a painful eye flareup, it's straight to your doc for management. Sometimes it feels like a computer game, getting past half-trained, poorly-managed staff to get sensible help and advice. So difficult when we are ill, and we wonder whether they understand they are being paid to help vulnerable sick people. So maybe allow yourself to be pleased that you've handled it well and got where you need to be? It's about finding someone to think about this with.

On Hope. Dry eye and cornea problems are a big research focus now. Even this autumn, as it affects you directly Lizlou, we have professional exchange meetings like Eucornea coming up and QVH Eyebank Jubilee, and you are in all the right places for anything new.

Worldwide there are amazing developments in tissue engineering and regenerative medicine, including for the cornea and eye surface, and in eyedrops.

Thanks for detail on your food sensitivities NotADryEye, that is so important and useful - science on gut microbiome and diet's effect on the body is such a key.

[lizlou29]

I have a good quality tea tree oil and tea tree shampoo at home so I would give it a go again but I'm a bit hesitant as I'm in quite a bad flare up at the moment and I know it has to be used quite frequently to start off with. I haven't spoken to my current consultant opth about it but I'm seeing him tomorrow so may ask.

NotADryEye - I have been tested for Sjogren's but the rheumatologist is almost certain I don't have it - negative ANA, negative RF, low inflammatory markers and no dry mouth.

LM - After I started on the thyroxine I started to feel quite strange and as I was 'borderline' with a TSH of just under 9 my GP told me to stop taking it and wait to be tested again. Although I don't like the idea of taking medication for the rest of my life I thought this could be contributing to the dry eyes but my GP as so little knowledge and despite an extensive family history of thyroid problems she doesn't think it needs investigating further.
LM I didn't tell you that the nurse who shall not be named told me to take off my moisture chamber sunglasses last time I was in the waiting room and told me my eyes don't look so bad so not to cover them up. I told them that they were to keep the air away from my eyes and she said I was self-treating and the eye drops that they prescribed (which kept me housebound for two days after I used them) are the best treatment. Really worries me that she is in charge there!

[lizlou29]

Forgot to say, I had a Food and Drink York Test done a few months back. It is probably the most well known commercially available food allergy and intolerance testing company in the UK. Was quite expensive and all that came out of it was that I have a mild sensitivity to elderflower and gooseberries, neither of which I like anyway so it was a complete waste of money.

[NotADryEye]

lizlou29, sorry if I'm covering old ground, but it sounds like you are hypothyroid. Do you have Hashimoto's?