I cant see an end to this hell

[nutteetart]

Hi everyone
My dry eye has been getting progressively worse over the last two years and its only been the last six months i have been diagnosed by two different opthalmologists. the first said bleph and the second dry eye. Nothing anyone has done has helped.
I am now recovering from a full hysterectomy which requires rest. Can u imagine how hard it is to rest when u cant read or watch a film.....im so depressed.
I was hopeful that my hrt might help but i suppose its too early to tell as its only been 3 weeks.
I am doing lid cleaning etc and clinitas gel/drops but favour lacrilube. I dont get watery eyes but i squint so badly my face hurts and i get headaches. I am an acute anxiety sufferer and stress makes it worse.
I dont even know what to ask you because i feel like this is me for the rest of my life.
Thanks for letting me moan for a while.
X

[No tears in ATL]

Nutteetart, I am sorry you are going through this. I agree, it is hard to see the light at the end of the tunnel sometimes. I'm crossing my fingers that the HRT starts working for you. In the meantime, have you thought about audio-books? You can download them from your public library for free, if that service is available, and there are subscription services too. I use them to keep me off the computer, and while doing chores, etc., and also to relax me before bed. Hot showers can get you into a relaxed mode also before bed--the rise and then drop in body temperature gets you sleep ready. I've found sleep is essential to stress management and healing, and the more of it I get, the better off the eyes are. That's all I've got so far in my bag of tricks for stress management, beyond the usual clean eating and moderate exercise.

[nutteetart]

Thank you for sharing your bag of tricks. Its truly appreciated x

[Faith1989]

Nutteetart it would help if you mentioned what you have tried. Did anything help even a little? make you worse? I can't suggest anything if I don't know what you have tried.

Thanks!

[nutteetart]

Hi Faith
so far i have tried compesses, lid margin cleaning, viscotears , celuvisc, lacrilube, clinitas drops/gel and a course of antibiotic drops for bleph. I dont want to sound negative but i have found no obvious pattern and no relief from these products.
I have approx 3/10 days where they are bearable and i can function but i havent found a trigger.
Stress makes it worse but i dont feel is the culprit entirely. I have only been on hrt for 3 weeks and out of that ive had about 5 good days.
My husband took me for a walk by the river today. i dont see much because i have one eye shut most of the time. its like being partially blind. i trip and bump into things and i cant drive and havent for a long time.
I am at a loss so please give me some hope if u can.
X

[Faith1989]

I can give you some suggestions, but my no means am I cured..
1. Use the dry eye shop on this site and purchase a pair of moisture chamber sunglasses. You can wear them to help with wind, air conditioning ect. It really helps.

2. Try to cut out inflammatory foods

3. Try maybe a course of steroid drops? And/or restasis. They help a little

Do you have any visible Acne or rosacea on the skin that could be why you have bleph?

[nutteetart]

Thank you.
I was just looking at restatis and i may ask next time i see the opth. Trouble is im not due to see him until december!
Not sure about steroids as i asked about taking ibuprofen for inflammation. the doc looked at me strangely and said 'what inflammation'! Also second opth said i didnt have bleph.
None of them seem to care. they look at my eyes, prescribe drops and give me an appointment for 3 months and then i go through it all again. i have no obvious signs of skin conditions except my squinting had gone on so long i now have an ugly skin tag under my eye now.
I will check out glasses x

[littlemermaid]

Nutteetart, do you need cornea specialists in ocular surface disorders? have you had hormone rebalance after hysterectomy? are you taking, or have you taken in the past, eg antidepressant and sleep meds with dry eye side effects?

Our GP says if we want referral out of our county, and there is no paediatric specialist in our county because they are in tertiary hospitals, then we have to pay Private to get NHS follow-up. So that's an option. Your GP may be able to refer out of county though to eg Moorfields; it's postcode lottery now on CCG budget and ours is failing, unfortunately, whereas I think yours is doing OK.

'Restasis' is easily available here NHS from Moorfields Pharmaceuticals as a cyclosporine formulation (see website). Even in the NHS, some Ophthalmologists may not know that, although it is standard in the tertiary eye clinics. I don't think the answer 'try it if you want to' is good enough either when we are looking for a professional dialogue and supervision. 3m follow-up is good though, especially if you can go back there for help if there's a flareup.

Worth trying some new management ideas from Dryeyetalk if you haven't already, wraparounds, night mask, humidifier, allergies etc.

Re anxiety and dealing with chronic difficult *, I'm loving Oliver Burkeman's book 'The Antidote: Happiness for People Who Can't Stand Positive Thinking'. I got it free download from the library plus there's audiobook version x

[NotADryEye]

Nutteetart,
Please also tell us, as specifically as you possibly can, your exact symptoms. Dry eye is a multi-factorial disease. There are many components to it. Different conditions sometimes have the same or different symptoms. So if you describe your symptoms very specifically we may be better able to help. For example, you may say you have pain, but then also tell us, is it throbbing, burning, itching, stabbing, or does it feel like a foreign body or something is stuck in your eye. Does it hurt all the time? Is it better right after you wake up? Is it better, worse or the same if you open your eyes, if you blink, etc. The more detail you can give us, the better.

[nutteetart]

Thank you for your help. I will try to answer all the questions. LittleM.....i have had no hormonal rebalance as yet. i am having a blood test in november for hormone levels. im 3 weeks on estradot so its a little early i think.
Thanks for book idea x
NotaDryEye...my eyes tend to be a fraction more comfortable in the mornings with no crusty or glueyness.
I shower and wash my eyes with no tears formula which helps a little but doesnt last long. As soon as i open my
eyes to look up to look and talk to someone or at something they feel gritty,dry, sore around the edge from outer
brow to top of cheek area. I have an urge to close on eye (normally my left but can be my right). if i use drops the soreness and dryness feels worse. If i am doing something like cleaning or cooking, it can be better because my etes dont need to be wide open. Where i am often one-eyed, it feels like my eyes arent always tracking together! if i use lacrilube im blurry but it makes them feel marginally better. In the evening they are so uncomfortable, i frown and squint to such an extent, i have neck ache and my throat muscles ache where i am holding myself strangely.
At times i even feel nauseous where i cant see properly. So frustrating x
Two other things the opth thought were irrelevant (but who knows) 1. Ive got excess phlegm in my throat all the time but i dont know if the mucus in your throat is the same as the eyes and 2. I have a dodgy wisdom tooth. not sure if that could have an affect.

[NotADryEye]

1. I too am more comfortable in the morning. Sometimes these days the comfort lasts much of the day. Sometimes I have days where I am comfortable only in the morning. As per Dr. ****** this is typical of mgd.

2. Grittiness is a sign of aqueous deficiency, also as per Dr. ******. If looking up is worse, this is a sign of the same thing, AD. Grittiness might also be something like Cogan’s syndrome aka map dot fingerprint. I was once incorrectly diagnosed with this. For those who have it, it comes and goes. But your symptoms don’t seem to indicate this, do they. Your grittiness is daily or even continuous.

3. If you’re like I was, and feel this awful feeling around your eyes, brow to cheek,and in my case all around, it may be chalasis. No amount or type of drop will help if you have symptomatic conjunctival chalasis. The tissue is stretched and wrinkled. The only solution for this that I know of is surgery. The only way to tell for sure is with a medical diagnosis. I don't think you can see it in the mirror.

4. If I have been looking up for a while, looking down always does feel better. Again, an aqueous problem.

5. You’re squinting now. I remember squinting. Eventually I figured out that keeping my eyes closed was the only way to stay comfortable. Does it hurt or feel worse if you have your eyes opened and you wave your hand in front of your eyes? Don't do it if you know it will hurt.

6. In my way of thinking, the phlegm could be a sign of something systemic, perhaps something autoimmune, acid reflux even, or something else. Many of these systemic conditions can contribute to dry eye.

7. The treatments for AD, mgd, chalasis, are all very different. The way I see it, is if you address one issue, but not the others, you probably won't feel better and you might think that the treatment for the issue you addressed is not effective. In fact, what you probably need to do is address the other issues because "dry eye" is multi-factorial in nature and one of the reasons why it is so difficult to treat and achieve comfort.

[nutteetart]

Well i cant ask for more of a comprehensive, informative supporter!
With your help i have more to research and therefore more hope but in the meantime i cant thank you enough.
I will keep you informed ....
Thank you

[L8rgator]

I have a single dry eye, so the moisture chambers that cover both eyes are annoying for me. I only need one eye to be fogged over, and with both I can't see anything. I have found that these moisture chambers allow me to read with my good eye, while not totally obscuring the vision of my bad eye (my doctor gives me these for free):
http://www.richmondproducts.com/shop...roduct_id=1419

The downside is my skim gets irritated by the soft open-cell foam - I have very sensitive skin. And both my cats and dogs like to chew on them. The small is for small children, and the large is for everyone else.

I end up gluing a fabric ring around it to make the surface soft. Although this week I'm experimenting with cutting and using the disposable liners for Tranquileyes, which can be found in the dry eye shop here. First attempt fell off pretty easy, but I see potential.

I have also taken my regular glasses, and used the blue tape available in the store here to seal up just one side. It worked really well - I was able to even ride a motorcycle with this once. More of a temporary thing, but nice if you want to sit and relax and don't want to be constantly fussing with moving straps back into place around your head. The tape sticks well, but comes off easily and cleanly. And doesn't bother my sensitive skin at all. And it's cheap! When my bad eye starts to sag at the bottom, sometimes I'll use a strip of tape across the outer edge just to pull it up a bit so it closes more fully with each blink.

I second the audiobooks. I walk dogs for a living, and get really board doing it. I got some audio training books and am learning Spanish with them. Still pretty boring, but I feel like I'm doing something useful, and then I can dream about moving to a nice affordable country with a humid climate someday

A full hysterectomy will really mess with your body and brain also - and can make everything feel hopeless. Try to get your hormones balanced out as soon as possible. It took me a couple months for my body to adjust enough to be able to start testing which pills & patches would help me start feeling better again. The vivelle dot (estradoil) patches work best for me - but at a very specific strength that took some trial and error to find. Pills didn't work at all. More recently a nurse practitioner added compounded progesterone cream, and it really helps with my serious anxiety problem, and makes it much easier to fall asleep. I've found you can get generic versions on amazon, although the compounded prescription was much nicer. With those 2 drugs and and a total hysterectomy more than 8 years ago, physically I'm so glad I did it - wish I had done it earlier. But it took my body adjusting for a good 6mo-1 year to get there, so know there is light at the end of the tunnel!

[No tears in ATL]

A full hysterectomy will really mess with your body and brain also - and can make everything feel hopeless. Try to get your hormones balanced out as soon as possible. It took me a couple months for my body to adjust enough to be able to start testing which pills & patches would help me start feeling better again. The vivelle dot (estradoil) patches work best for me - but at a very specific strength that took some trial and error to find. Pills didn't work at all. More recently a nurse practitioner added compounded progesterone cream, and it really helps with my serious anxiety problem, and makes it much easier to fall asleep. I've found you can get generic versions on amazon, although the compounded prescription was much nicer. With those 2 drugs and and a total hysterectomy more than 8 years ago, physically I'm so glad I did it - wish I had done it earlier. But it took my body adjusting for a good 6mo-1 year to get there, so know there is light at the end of the tunnel![/QUOTE]

Just seconding L8. I'm no hormone expert, but there was a time when I was vegetarian, eating soy (in the form of tofu) almost daily. Well, as we all know, soy is high in phytoestrogens. I had so many horrible PMS symptoms and other strange things happen that never occurred before. And it was just tofu! You know--the stuff that all the studies had been saying was good for you, with cancer fighting properties? (I'm not bashing soy, I'm just saying that phytoestrogens were a bad choice for me with my particular body chemistry-obviously I had plenty of estrogen at that time).

I guess my point is that hormones are a very delicate balance. If tofu can tip the scales for me, what else is possible? I think it's because of this experience that I might consider the underlying hormone balance first. For example, that imbalance can be triggering anxiety, which triggers inflammation, which causes dry eye. I'm no scientist, but I'd like to see a study on the hormone and/or anxiety/depression link to inflammatory issues in the body, better yet, specific to dry eye.

I wish you well, nuteetart, and I hope that your doctor will listen. Maybe keep a diary of things such as daily anxiety level, activity level, what you ate that day, and dry eye symptoms. Take that information to your doctor and a well-respected naturopath. Though most of us get 10 minutes max with a physician, it is really up to us to be our own best advocates. I've personally annoyed my docs to no end. It's all DEZ's fault. : )

[abbygirl]

Yes, I agree that hormones can play a key part in dry eye.. also stress. Looking back my problems began after several years of chronic stress followed by early menopause and then the dry eye. I also have Hasimotos which is made worse by stress. One makes the others worse.
Try to get your anxiety under control and that will help your hormones kick in. Give it time and get the moisture glasses so you can get some relief.
Good luck to all of us that need hormone balancing!!