I can't cope anymore

[lizlou29]

As the title suggests I've really had enough. My opth whom I really like has said I need to forget about my eyes and be positive but he did say that are still getting drier despite all the things I'm doing. I also have cysts along the eyelid margin and now antetior bleph ( as well as AD and MGD). Right now I haven't slept again due to the pain. I can't work, I can't even go to my local shop to get food. I'm not exaggerating the pain, it's the worst is been and I've kept up with work as much as I can but the pain that ebbed and flowed is now relentless.

I went through hell giving up sleeping tablets a couple months back and I don't want to start them again but not getting even a few hours respite from this is hell. I can't know I'm not the only one going through this but now i can't even see a glimmer of hope. I just don't want this painful, depressing and joyless life anymore. I'm not really eating not and want to be in bed with my eyes closed all the time.

My GP is calling me later, I got desperate and called the surgery. I dont even know what to say to her. I was thinking of asking to try gabapentin but now I've read it's drying. I tried lyrica early this year but my eyes weren't as bad then, it made me feel a bit strange. My opth said don't take antidepressants because they will dry my eyes more and its better to think positively and just get on with life as if nothings changed. He means well but I just can't do that, the burning/stinging is too much to bear now. He said with my eyes as dry as they are I should use drops every 20 mins but they don't help and sometimes make it worse.

I can't stand the anxiety at night. I have no life and I think no future. How am I meant to carry on if not one single thing is helping? I'm using prednisilone but that has made no difference.

[DCRdryeye]

lizlou,
I've been where you are as many as others here. But knowing how you feel isn't going to solve your problem. I'm curious about the treatments you've tried and what could be the cause. You are obvously at the severe scale of dry eye including MGD. If you have cysts, you would do well with having your glands probed and expressed.
Using ongoing drops every 20 minutes will only increase your anxiety and is a real nuisance. It's also not tackling the underlying issues such as inflammation, possible hormonal imbalances, possible food intolerances.
Make a list of everything you haven't tried and go through them one by one and gradually you'll improve. Are you using moisture chamber glasses to assist with the pain in the immediate moment?

[littlemermaid]

I think you need to call him right now, ask to be stabilised today, and long-term ask for the next stage of treatments for healing and protection past steroids eg he knows lots about bandage lenses and could access autologous serum. It is important you feel responsible and in charge of this yourself, it's a conversation you're having with a professional, and that you are working together on it.

Maybe don't leave it, so he can get you comfortable now. Speak to his on-call Ophth Reg urgently if he's not right there now, then there's a plan at least in case you need admitting. Speak to Patient Liaison urgently if there's any difficulty getting past Triage Nurse-zilla, altho I think you have direct number to Secretary and Registrar now.

It seems the thyroid imbalances and oral meds are a big part of the problem, and the endo is not being successfully attended to - when's the appointment?

Depression is a mood and rationalising sometimes just doesn't touch it, I know. If you need to spend days in bed ill, do it. But see the Ophth today for stabilising and a conversation about further treatments x

DCR, I'm not sure MGD probing would help mainly because she is hypersensitive and inflamed. Lizlou, what do you mean by cysts?

[lizlou29]

DCRDryeye - I haven't got moisture chamber goggles. I know I should get some.

LM - I saw him yesterday evening and he was basically a counsellor for an hour saying I need to just get in with life. The eye surface is fairly calm given how dry my eyes are but the lids are red and hot and is the cysts that are causing the extra pain. My endo appt is tomorrow. He is not there today, back in tomorrow but I'm not sure what he'd do now. The other staff there are pretty fed up with me going on every few weeks I think.

The problem is I'm slowly giving up and funny have the motivation to keep trying new things.

[littlemermaid]

Ah bless him. An hour. He is such a kind doc. You are very very lucky to have him.

No one cares what the other staff think. They are paid to be nice to sick people and provide a national Public Health Service.

We are allowed to give up for a bit and take a day or two off from panicking. Just rest.

We know there's probably drug side effects going on drying you up, and some endo. Even after 5y, at our house, we are still finding it hard to accept that this * has happened.

Has he tried clearing the meibomian cysts with azithromycin? (Azyter from Moorfields)

You would have liked meeting everyone at Moorfields cornea day on Saturday so let's hope they do another one. We met people dealing with dystrophies, grafts, procedures. All together with the docs, supporting each other and sharing future research. Wonderful and hopeful. Next time, I'll come and bring you!

PM me, if you want, to tell me what your worst fears are. Love x

[lizlou29]

The only meds I take now are Levothyroxine and Doxy. I wonder if the sleep meds have had a permanent effect.

My boyfriend is trying his hardest to help as I'm disabled by this and the lack of sleep.

I really want to give up because what is the point of a life lived in pain? I can't do much for the mgd other than take doxy and omega 3 as warm compresses aggravate the rosacea and have never given symptomatic relief.

[littlemermaid]

I can talk about the overwhelming anxiety by PM but not in public because people check in here to Dryeyetalk and get very upset, especially first-timers who've just started dealing with various conditions. What they are looking for is information and sharing useful coping strategies - life is hard for anyone who is here.

The problem is that depression can be so temporary, especially when meds and brain chemicals are involved, and people sometimes never hear when we are fine again, even though it would be good group therapy manners to let people know.

We have found it very useful to talk to other people of different ages dealing with ongoing conditions, like cancer, rheumatology, diabetes 1, other autoimmune, to see how they manage things.

Do you know how to get moisture chamber goggles from Dryeyeshop or internet, as DCRdryeye says? would that make a big difference?

I know you know that thyroid imbalance brings these feelings too.

Hope your boyfriend gets some peace and respite too. He sounds great.

Tommyboy, a wonderful man, has been dealing with this and was so kind to post up to tell us how he managed - maybe check out his posts x

[lizlou29]

Without this forum I'd probably be even more of a wreck than I am right now so I'm extremely grateful to everyone here that has helped me.

I just had to deal with a different GP at the practice I go to as mine is on holiday. She wanted to prescribe me antidepressants but she doesn't understand the eye condition very well and thinks a lot of it is in my head and that "if you think that it will be drying then I know you'll be coming in here saying it's cause you problems, you need to stop thinking about it". I know I've become hesitant to take anything but that's because of the bad experiences I've had to date with drying meds.

I've got to go and a pick a copy of my last blood test results up from my GP and even the thought of going outside and facing the receptionists with my bright red eyes makes me want to crawl back to bed. Will just have to put my moisture chamber sunglasses on and go for it.

[littlemermaid]

Yes, we take charge and find our own way forward with this and choose our own knowledgeable professionals to work with. Any attitude from receptionists, say 'can we ask someone medical?' lol.

Worth mentioning that this is a mutual support group and we're all kinda hoping that you and your doc will come up with our cure one day too x

[soaps]

Liz i was very similar few months ago and Dr appointment put me back due to pain of leaving my dark room. but i am better and u will b too. u have to press on and believe u will get better .

Im worried about ur lack of sleep. i was sleeping two hours at my worst . and my Dr worked hard to at least achieve 4 hour sleep for REM which allows for healing.

Is it the eye pain that affects ur sleep ? What have u tried ? I tried heaps before i could sleep .
Also which eyedrops have u tried ?

[lizlou29]

Soaps - I was on sleeping meds for 9 months in total until my GP said we had to stop them cold turkey and it took me 2 weeks to start sleeping more than 2 hours a night, that was in August and up until last week I had started sleeping about 5/6 hours then when the pain really became overwhelming I have been averaging an hour or 2 at most. I can't go back on sleep meds because zopiclone (lunesta) made me anxious and depressed and I had to up the dosage to get a few hours sleep. I lost a lot of wight and couldn't remember things properly. I tried serqouel which is probably what tipped my eyes into the severe category. Mirtazapine and Trazadone didn't help.

I use Celluvisc as they are the only ones I can tolerate. I don't get relief from any of them unfortunately.

[NotADryEye]

Thyroid can definitely cause anxiety, depression, despondency, when it is low. Levothyroxine is the generic version, in the US. Although we are all told that brand name drugs and generics are the same, the fact is with Levothyroxine, according to my GP, my husband's GP, my DO, my naturopath, endocrinologist and others, the dose in one Levothyroxine tablet can vary by 15%. (My GP will not prescribe Levothyroxine to any of her patients, neither will my DO). That means you might not be consuming enough right now or you might be consuming too much. If you are taking too much you can be hyperthyroid and that can cause eye pain as well. In addition to the impact on mood, a low dose can impair gland function and you end up with aqueous deficiency, etc.

Can you ask for and afford the brand name? In the US it is Synthroid.

[NotADryEye]

DCR, I'm not sure MGD probing would help mainly because she is hypersensitive and inflamed. Lizlou, what do you mean by cysts?

Like lizlou, I'm sensitive to everything, hypersensitive, and can tolerate nothing, not a single drop of anything, and was probed when my lids were extremely inflamed. It's when I needed the probing most. The probing is brief. All lids all glands takes only half an hour. Afterwards there is so much relief.

You can be probed without any anesthetics. Your eyes will water. But it's over quickly and the relief is immeasurable.

I've seen cysts covering my meibomian glands in my magnifying mirror. When they are visible and blocking the orifices, it is obvious that your glands are obstructed, meibum is not secreting.

But this is moot as there is no one probing in the UK, is there?

[littlemermaid]

David O'Brart does MG probing, I think.

Lizlou, I've just realised the weather's changed, if that affects your rosacea-type symptoms http://rosacea.org/weblog/relaxed-li...er-rosacea-bay

[NotADryEye]

lizlou, if you can manage it, try to see this doctor. By the information on his website it looks like he has a good handle on dry eye. In addition to probing, he treats demodex mites, for example. If you tell him you are sensitive to everything he may understand. We are all with you. Please keep us posted.