Feeling lost, scared and alone with this

[nutteetart]

My dry eye condition has been coming on for some time now but is now chronic. It makes me squint and close one eye which effectively leaves me partially sighted. i am bumping into things and i am a danger crossing the road.
I am currently awaiting a hysterectomy and i am hoping that my hormones are currently adding to this problem and that by addressing one problem, it will affect the other.
I am waiting to visit the eye hospital and i think they will offer me plugs but i am feeling like my life is now catastrophically affected and i cant see a way forward. i cant enjoy walking, drawing, reading or even applying a little make up. i already suffer with anxiety and panic. feel like there is no hope for me. sorry to be so negative. Any advice would help please

[PotatoCakes]

#1 You're not alone. There's a lot of us on here, with varying degrees of dry eye disease but, it's all bad and we have all gone through (or are going through) some form of mourning and emotional recovery.

#2 Without knowing where you are in your disease, it's hard to offer a lot of advice.

I'll start with eyedrops; what are you using? That's an somewhat easy first step. Eye drops won't cure you but they can offer some comfort, and that's important. Your eye drops should be single-use, preservative-free drops such as Refresh Plus (there are other brands too). Drops that come in larger bottles can contain preservatives that can further dry your eyes, believe it or not. Drops like Visine are out, they can make your eyes worse. My first doctor told me to keep my eyes close for 2 minutes after applying drops and it really does make a difference. I am not consistent about it all of the time now but, when I'm having a lot of issues, I find that it really helps. Use a timer; two minutes takes longer than you think it will. Sometimes I use those 2 minutes to think positive thoughts.

It sounds like you are seeing a physician, so hopefully you're seeing someone you have confidence in.

What have you tried so far? Restasis? Antibiotics?

What has your doctor diagnosed you with?

Have you tried warm (not hot) compresses? Cold compresses?

Are you on medication for your anxiety? Have you talked to your doctor about whether that may be contributing to your dry eye? If so, have you considered other medications? Sometimes one drug will cause problems but another won't, or they will be less severe. If you aren't on medication, it's something you might talk with your doctor about. Sometimes people get into a place where they need a little help; it's ok.

Have you tried protective glasses? There are a number of brands out there, many carried on this site. I find that even wearing regular sunglasses helps block some air movement. I use Onion Goggles when I'm chopping onions; if they were prescription, I'd probably walk around the house with them on a regular basis.

Once we have a bit more information, it will be easier to make suggestions. I know it can feel like the end of the world; I've been there. There is life with chronic dry eye disease, though. I, along with others on this site, are proof of that. You can still have bad (emotional) days, but you can have some really great days too.

[Cali]

It just feels "catastrophically affected" right now. And it probably is "right now." Nobody can negate that feeling especially on this forum. Most of us have walked in your shoes. Many still are. Take it bit by bit. PotatoCakes is right. Post on the forum what you're doing now, what your symptoms are now, what you're taking now. People have walked this path before you and can help you through it. Just provide info, in bits and pieces as you can and you will find much compassion, real assistance and hard won solid direction and advice. Others can help you through the worst of it. By no means are you alone.

[nutteetart]

Thank you for your support. I am based in the uk and i have tried different drops including preservative free but they seem to wash out quickly. It feels like its the quality of my tears that is affected as i get more support from lacri lube because its greasy (yet unattractive). I do warm compresses and wear normal sunglasses. Finally i am taking pregabalin for anxiety.
I am definitely worse at different times during my cycle or under stress. I am shortly expected to be on hrt and my stress should be less as i am about to sell my shop because the pressure is too much.
Thanks again x

[nutteetart]

Thank you for your support. I am based in the uk and i have tried different drops including preservative free but they seem to wash out quickly. It feels like its the quality of my tears that is affected as i get more support from lacri lube because its greasy (yet unattractive). I do warm compresses and wear normal sunglasses. Finally i am taking pregabalin for anxiety.
I am definitely worse at different times during my cycle or under stress. I am shortly expected to be on hrt and my stress should be less as i am about to sell my shop because the pressure is too much.
Thanks again x

[littlemermaid]

NT, Have you been able to access help for anxiety and stress? There's a few therapy options here but it depends what suits you http://www.nhs.uk/NHSEngland/AboutNH...hservices.aspx. If this doesn't suit you, the libraries or downloads are good on self-help strategies these days, eg there's a few of us here pursuing cognitive behavioural therapies (CBT) with a view to coping with this level of *. I think we've all found it's best to get on the waiting lists early anyway, just to keep options open.

I guess selling your shop could be a big relief but you might miss the routine (?). While you're recovering from surgery it would be nice to have a plan for doing things to make you feel better, even if it's buying a garden swingseat and sorting out audiobooks or visualisation recordings. I'm thinking yoga when you're ready ~ is this you? We've found weekly commitments are a big help with depression or anxiety, esp enjoyable exercise or counselling or companionship. Is there any alternative therapy you've thought about trying for stress?

Do you mind me asking, what do your eyes feel like just now? I'm wondering if you're getting enough help or if you need to be seen quicker. Have you got any kind of diagnosis?

My child had lower punctal plugs for a while and I think there was a big improvement in tear film and comfort. Sourcing moisture-sealed glasses now might help you with comfort and eye protection, as Potatocakes says.

It always feels better after an assessment and chat with a really good ophthalmologist who's interested in supporting patients with dry eye and getting it all under control ongoing. There's a few of us here from SE England who've done the eye doc rounds, as it were, so if you want to talk about that, we're here x

[nutteetart]

Thank you Littlemermaid, I have suffered from anxiety for 15 years and I think I have done just about everything. I am currently still pretty restricted as I cannot drive anymore because of anxiety and now dry eye and I don't go anywhere without my long suffering partner!
I was about to embark on a support group which focuses on breathing exercises and yoga when I discovered a massive fibroid which is at present, stopping me from continuing this form of support however, I do wish to progress with this as soon as my surgery is over and done with in Aug/Sept.
As far as my shop and the routine is concerned, I think you have hit a nail on the head where I am concerned because it is my structure at them moment, however, it has become everything and there is no balance in my life. I now have no choice because I know it will really impact to a degree that could be just too hard to recover from. My future is therefore uncertain which causes more stress
I am truly terrified of seeing the eye docs but have now no option because my quality of life is so compromised that its a do or die situation but I am also in SE England and am waiting to see someone at Maidstone Hospital. The waiting shouldn't be too bad from what I gather which is good because I am really bad at the moment. I am one-eyed and very sore.
Thank you so much for your time and support x

[Cali]

Below are some things that worked for me. I’m writing these as recommendations to hold you over and keep you sane until you can get in to see a doctor. Once you figure out what is going on with your eyes, then people on this forum can assist you with your particular issue. Again, these ideas are just meant to help hold you over until you get a diagnosis from your doctor:

DROP FREQUENTLY: By the time I got to in to see a doctor, I had cornea erosions all over my eyes. The lesson I learned is to use your drops frequently. Do not ever let you eyes feel dry. If you can, try every 30 minutes, every hour, or every two hours. If you get over the counter drops and you break off the tip, some can be reinserted then kept in the fridge. Therefore, one plastic vial could last you 3x (dropping in each eye). I went thru numerous drops, none really worked except for the real ointment, greasy types. The one exception for me was Thera Tears Liquid Gel (Great for Nightime & Extra Strength for Daytime). It’s preservative free. But the “gel” stays on longer and does not look greasy. Or keep using your greasy Lacrilube…who cares what you look like right now, you’re hurting. Just drop as many times as you can until you get into a doctor. Frequency counts, I can’t stress this enough.

LID HYGENE: Make sure you are washing your eyelids, morning and night. Some people have an excess of demodex mites which eat the oils on your eyes. Tea tree oil kills them, but you can’t put it straight on your eyes, too harsh. Try to find a facial wash that has tea tree oil in it or use a commercial lid scrub. Stay on your warm compresses if they are working.

PREGABALIN: I think this drug is an anticonvulsant drug used for neuropathic pain yet you are using it for anxiety? Maybe look into this medication further. Does it cause dryness? It’s very important to keep your stress level down as it will aggravate your eyes. I tried both Xanax and Valium both are for anxiety. Xanax lasts about 3 hours, Valium about 7. I now take Valium before bed at night. I also take an anti-depressant because my mood sunk so low. I tried a number of them, all dried my eyes. Wellbutrin is the least drying to the eyes. Take care of yourself psychologically. Choosing the correct medications to address this helps a lot.

BLEPHASTEAM: We don’t have access in the US but these look like they’d be really great: http://www.blephasteam.com/home.htm

LIMITS: Limit computer use, reading and watching TV. It affects you blink rate which is drying to your eyes. Books on Tape: Get a little CD player with earphones and listen to books on tape. I get mine from the library. I bought organic socks, filled one with long grain rice. I heat it in the microwave for 50 seconds then place it on my eyes, put my earphones on and zone out to a great story that takes me away from all of this. Curbs anxiety and gets the glands flowing.

FISH OIL: Get a quality fish oil supplement. Recommendation is to begin with 1,000 mg Omega 3 per day (EPA and DHA combined to equal 1,000mg). It’s OK if other Omega 3’s are in the formulation, but the EPA and DHA must be there to provide any positive effect. The reason to begin with lower doses of Omega 3 is that there are potential side-effects for some folks (blood thinning and inhibiting blood clotting being the major potential problem and possibly stomach irritation). You must read the label on the back of the bottle to determine the amount of EPA and DHA per capsule. Try about 1,000 mg to begin and give this dosage at least three months to determine effectiveness. If not effective, you can increase the dose to 2,000 mg per day, but then should check with your doctor to make sure there is no interference with other lipid reducing medications you are taking or any concern for potential bleeding problems. Overall, it appears that the Omega 3s, comprised of the EPA and DHA varieties, are the most effective element in providing an anti-inflammatory effect. There are numerous clinical studies to confirm this.

[nutteetart]

Wow. thank you so much.
Had such a bad day. my squinting eyes cause headaches and facial pain. I havent read that many others have issues with squinting. Is this just me?
Thank you again for your help. x

[littlemermaid]

I am truly terrified of seeing the eye docs but have now no option because my quality of life is so compromised that its a do or die situation but I am also in SE England and am waiting to see someone at Maidstone Hospital. The waiting shouldn't be too bad from what I gather which is good because I am really bad at the moment. I am one-eyed and very sore.

What's the worst thing you are worried about seeing an ophthalmologist, NT? I'm not keen on docs but now it's just another thing we do regularly. It's a Service, clue's in the name.

In pain, you can access A&E Eye Clinic same day. Phone to ask if you need an appointment. Referral is good from a recently-trained optometrist in eg Specsavers, VisionExpress, Boots. A GP can refer to A&E Eye Clinic same-day. Although GPs can lack knowledge and ophthalmoscope, they have to refer to ophthalmologists after their treatment attempts don't work http://www.nhs.uk/conditions/dry-eye...roduction.aspx. Self-referring very first thing in the morning saying 'I can't see' also works well.

Important to see a Cornea or Anterior Segment consultant rather than a generalist. http://www.mtw.nhs.uk/ophthalmology/our-staff.asp Eg Mr C Jenkins is listed as the regional cornea consultant although not as eye surface disorders specifically, which would be even better. I notice he works rota round the NHS Trust yet still finds time to see private patients in Bupa Alexander on Mon eve http://www.spirehealthcare.com/alexa...opher-jenkins/ and BMI Somerfield http://www.bmihealthcare.co.uk/consu...ins&p_id=42877 on Wed pm and Thu am. If you want to take more control and pay for assessment now then they will be all too pleased to quote.

If you don't like him, which is an option, there's NHS Queen Victoria at East Grinstead which has a cornea service, or even going up to London eg Moorfields.

Maybe it's important you feel totally in charge of progress on this, NT. I mention above a few options to help with that feeling. We know the NHS is itself a fabulous but nutty tart, especially just now. We have to resign ourselves to travelling for docs these days ~ all we need is one good one to work with though.

Have you got someone to talk all this over with apart from the long-suffering partner? Mine is finding it all too much. I think he deserved me finding a listening ear and practical help elsewhere too. I'm not sure I could deal with 'me' and my problems long term if it was the other way round, especially sadness and worry from the past which, to be fair, unrelates to him. It doesn't seem to matter who your listening ear is - my friends are evangelical about their yoga teachers, as you say, homeopaths, cranio-osteopaths, whereas I like expert eye docs, coffee shops and internet forums. Any better ideas rather than waiting till after the operation?

Are you sure CBT isn't your thing? It turns self-talk into positives so we can accept life's difficulties and find practical ways forward, which sounds like exactly what you're doing for yourself now. Would you say that, at heart, experience has taught you to be a bit of control freak? I'm just wondering if eg someone else could run the shop for a bit.

[nutteetart]

Thank you again Little M for your support.
I am a great believer in CBT and I am desperately using every tool I have learned since my therapy finished just a few weeks ago.
I remain, however extremely agoraphobic and travelling anywhere can be difficult but I am so uncomfortable at the moment I know I will have to take diazepam and get on with it! Eyes are squeamish things though!!! (I never used to be such a wimp!). My mental state has made me a little control freakish though, you are right!

I am pretty sure that my hormonal situation is affecting things at the moment because alongside my squinty, sore eyes, I am also enduring a 5 day headache, but I also know I must sort this issue out with my eyes. Hoping to feel better in myself I suppose so I can tackle what to me, is an ordeal of the eye hospital.

I will have a look through your links and make my choice. Only I can do this.

Thank you again x

[littlemermaid]

Hello, NT, Are we sure this whopping 5 day headache is stress, hormone or eye related? Have you got any vision symptoms or have you ever had migraine before?

My d. had squinty eyes at the start when she was very photophobic with eye surface inflammation from untreated meibomian gland dysfunction and couldn't look up at all in the classroom. At that time we didn't know about taking fish oils and daily careful eyelid margin cleaning and warm compresses. Does this sound like you?

Which of your meds could be making the eyes dry? Are you taking something every day? My friend in her 50s, like me, has what sounds like a similar travel anxiety, to the extent that I visited her husband for her while he was touch and go in hospital in the next town. This is unavoidable now because of centralised care and he was in the best unit in the region. She is super-confident zooming about locally. Her cure is gentle, driving out in comfortable steps and extending it. But there are setbacks eg when her mother died. She was prescribed benzodiazepines while looking after elderly and ill relatives, but she's on something more modern now with less side effects. Cali is good on this above.

What does help her a lot is, interestingly, a relaxation therapist. She taught us breathing and physical moves for controlling purely the physical reactions, like folding the arms tightly and relaxation-on-command triggers eg pinching the fingers together. This subconscious level is where it happens for her. Any thoughts?

Can you find inner strength and peace in these new mindfulness techniques? I've made a start but I need another library book with exercises. Have you got coping strategies in place and written down after finishing the regular CBT?

I'd be amazed if anyone here enjoys the eye hospital but it has to be done. It was a huge relief to get attached to a regular NHS hospital clinic where the docs had treatment experience. That's where you are not alone.

Re private options for safety, our local one is in very pleasant countryside, stress free eg on parking and my dryeye daughter likes the 'free' hot choc machine and wifi, but I'm always aware he doesn't have backup and no one trusts private provider hospitals on medico-legal. But his advice and help was pure gold when we needed it. However, they are primarily there to milk the medical insurance companies or do one-off procedures for cash, backed up by NHS, so we are far better in the NHS long term. Some NHS hospitals have started queue-jumping private wings with 24/7 backup, labs, team, so that's worth a look, advertised on the websites, if the Wait is unbearable and you're worried about access through A&E. Obviously, docs are best first thing in the morning rather than after a long day at the coalface.

Do you have a local optician you like for advice on what might be happening to your eyes and who's the best doc?

Another thing that really helps me steel up courage is movie and real-life heroes.... since Sigourney Weaver took on that Alien it's been difficult to find an excuse. Any heroine you relate to?

[nutteetart]

Hi LM
Yes, I am very much like your daughter. Looking up is very difficult and I am photophobic! I have tried compresses and I clean my lids but I think I may need to do it for longer and check im cleaning properly. I am also taking evening primrose and omegas 3 and 6.

My (now 6 day) headache I am sure is down to my Lupron injection however, I cannot rule out stress as I have been under s=considerable stress for a prolonged period of time. I am hoping that this will be lessened within the next month.

I have just called my GP to find out if they have referred me to the eye hospital and they hadn't done it!!! I am so upset. It has taken me so much to do this and they cant even sort me out a referral! I have to now check back in 3 days. So angry.

The anxiety meds I am on is pregabalin but I am unaware if this has any adverse reactions to the eyes.

I am trying to use my mindful meditation techniques which I find really helpful but it takes practice so I dont always feel relief from it to be honest but I think it is definitely worth pursuing. As for getting out and about, I was trying little driving trips on my own but my eyes are now so bad that I cant see to drive. I feel really sorry for myself at the moment. I have panic, anxiety, an impending hysterectomy (and all the stuff that goes with it) and squinty sore eyes.

I don't have any real heroes but I just have to keep getting myself up, dusting myself off and starting again. Baby steps is my motto. Can I put the next foot forward? Yes I can!

[soaps]

Of course u can nuttee!! I did the same thing wen i was in a bad spot . i would literally stand up , dust myself off (i really did) and say come on keep going ! Baby steps r all u need whether its making it to dinner time or until ur nxt Dr appointment. Make urself smile and laugh at silly things. It will get better but most importantly u will get stronger.

I have heard mixed reports on omega 6 such as its proinflammatory . Im sticking to omega 3 and using cooking oils which have a 1:1 omega 6mega 3 ratio. Just started so not sure of results but thought id share.
http://theconsciouslife.com/omega-3-...oking-oils.htm

[littlemermaid]

I am unaware if this has any adverse reactions to the eyes

http://www.nhs.uk/medicine-guides/pa... 25mg capsules NHS Medicine Guides are useful for you, also http://www.nlm.nih.gov/medlineplus/d...s/a605045.html US National Institute of Health Medlineplus, or just Google eg 'pregabalin dry eye'.

Our GP is negligent on monitoring prescriptions, especially from hospital consultants, but our Boots Consulting Pharmacist will identify contraindications, track error and report side effects, even examine the patient. Can you find a pharmacist like that to use regularly?

You are thinking dry eyes, chronic headache and stress might be due/partly due to the pre-op meds - have they considered drug interactions too eg brain chemistry and central nervous system? Especially if you are considering self-managing on eg valium too. That's quite a cocktail.

If you haven't read it, you might like the news on GP Ofsted-style inspections http://www.guardian.co.uk/society/20...ns-jeremy-hunt We had a GP who wasn't writing letters who jeopardised our tertiary referral, but mostly the excuse is 'the secretary hasn't typed it'. If they give you that *, ask to speak to the Practice Manager for 'advice'. After that it's Patient Liaison for the NHS Trust for 'advice'.

Report side effects to the prescribing doctor in case meds need adjusting - is this a hospital Gynaecology consultant? They can do internal referral to a hospital cornea specialist Ophthalmologist more urgently. Maybe phone the Gynaecology clinic about side effects. Ask them to check what meds are listed in your hospital record.

Earlier you mentioned an 'ophthalmist' - they can refer to Consultant Ophthalmologist fast. If you have inflammation and photophobia and one eye is closed, you need it. 'Angry' sounds useful at this point x