Feeling hopeless and scared....

[littlemermaid]

Lizlou, Maybe have a look at 'corneal neuralgia' or cornea neuropathy - here, Medscape, PubMed, Healio Ophthalmology. There is research in Rebecca's blog about what nerve changes in the cornea have been seen through confocal microscopy. Yours/ours would be through chronic inflammation. Some docs are even speculating about using eg growth inhibitors (VEGF) after surgery for veins and nerves, I think.

I know it's a while back but can you remember when the eye problems started? have you got any suspicions about what's happened? virus, meds, hormones, skin etc? Ophthalmologists find systemic disorders tough so any thoughts you have should be useful to a kind eye doctor.

[Lacrima]

Hi Littlemermaid,
I'm just deleting and re-writing my reply- I hadn't seen that you provide a link which tells people how to get a Moorfield's appointment through referal.
Glad you clarify this and include info about Choose and Book and (PALS)- things I had no idea about. My own negative experiences with GP referals is the reason I recommended just paying at Moorfields but your advice to go down that route as a plan B makes a lot more sense.

[littlemermaid]

It's not just you and GPs, Lacrima - we had a very bad time in the county hospital ophthalmology service, including various A&E eye clinics, until I paid for private assessment and advice from a tertiary hospital ophthalmologist. Our GP practice refused Moorfields referral, even though advised by consultant ophthalmologists from the county triage service. I've never seen an ophthalmoscope in a GP office. The for-profit high street optometrists are supposed to refer eye patients to the right NHS hospital clinics, but again, it depends when they trained as to what they know.

It always depends which doctor you talk to and what knowledge they have.

[lizlou29]

Thanks Littlemermaid. I will take a look at these routes. The problem with asking my GP for a referral is that she's seen the letters sent from the opths that all make it look like I was satisfied with the treatment and so she didn't want me to move anywhere else. I will happily pay for a private consultation if my assessment doesn't go to well.

One more question. has anyone experienced aching eyes after using steroid drops? I've only put two lots in today and my eyes really ache.

[farmgirl]

Wow, how frustrating. Sounds like you are caught on a merry-go-round and can't get off.

I agree with SAAG that, in part, diet is key. I really hope that you focus on that (no pun intended) and get your body on the healing track, both physically and mentally.

I feel your pain, that used to be me (I suffer from Sjogren's). I have managed to make myself comfortable until about 5:00 now before they really start to get to me. Before it was noon so take heart, there is hope. My Schrimers and TBUT were/are almost identical to yours. When trying to describe to someone how I feel I just ask them if they know what it is like to have soap in their eyes. Of course they always do so I just explain that is what it feels like except that when my eyes are really bothering me that feeling doesn't go away.

I think that the single thing, besides plugs, that has helped me most are the WileyX glasses that SAAG spoke of. I dealt with a company called Safevision who sent me 6 frames (various companies) to try on my face. I paid with visa which was credited back when I returned the glasses. I have 2 pairs one for sun (as dark as I can find - not verigreys) and one clear for inside the house and nighttime driving. Mine are prescription and worth every penny.

There are of course other things that I am doing but you have lots to think about these days. I find we each have to find, through trial and error what does and does not work for us.

Having said all that I am getting to the most important part. Years ago I was diagnosed with a sleep disorder and prescribed a benzodiazapene (aka valium). It helped me sleep but it became apparent that I was going to need to be medicated for sleep for the rest of my life and was building a tolerance to the drug. Not wanting to work myself into a position where I would have to experience a nasty withdrawal I asked to be prescribed something different. What the Dr at the sleep clinc then prescribed me was gabapentin. The use was off label but it works like a charm and I have been using it for 15 years without increasing my dose beyond 600 mg. I started with 300 mg and for about a week hated it. I felt loopy until at least noon. Now (and have for years) I take 600 mg and sleep like I died. I still wake up during the night but only enough to go to the bathroom and add drops to my eyes and then am off to sleep again. I wake up feeling refreshed and don't need to nap in the day at all anymore. Without this drug I would never sleep more than a few snatches and had at times gone 3 nights without a wink of sleep. Off label my son uses it as an antidepressant so perhaps it could help you with that as well.

Anyhow, take heart, there is hope and in time you will be, if not cured, at least in a place where you can tolerate what you have. If your boyfriend and family support you, hang on to that because that is invaluable. Forge ahead with your plans for a good life, a home and a family because, trust me your life is far from over....cheers...F/G

[Guest]

Well said!

[littlemermaid]

Lizlou, Just to compound your joy, maybe get an eye pressure check this week just in case. They are supposed to monitor for raised pressure after starting steroid eyedrops.

As well as reading SAAG and Farmgirl very carefully (click name, click on 'View forum posts'), I am reading LaDiva's experience very closely on how to improve things. There are certainly many factors in hypersensitivity or 'rosacea' disorders.

If anyone's interested, UK NHS is regulated by http://www.monitor-nhsft.gov.uk/about-monitor-0 and Care Quality Commission. Influential UK patient advocacy services include http://www.patients-association.com/ and http://www.raredisease.org.uk/.

To avoid negligence or misdiagnosis, a GP would be best advised to refer an unresolved eye problem according to NHS Referral Pathways, having no training or ophthalmoscope. People can bypass GPs and queue in A&E for assessment after checking the hospital Emergency Eye Clinic criteria.

We are lucky that high street qualified Optometrists can assess and refer straight to hospital Consultants, including tertiary hospitals. They are not qualified to diagnose or treat but optometrist regulations dictate that if they see signs of morbidity (disorder) they must refer to Ophthalmologists.

There is also the question of whether a Consultant's clinic has assessed and treated to current NHS standards and service. If not, the GP has not referred to an appropriate service. Eg a nurse or hospital optician would not be qualified to advise on a prescription medication. The NHS website lists protocols clearly as a checklist to help prevent mistakes. A Consultant must refer on appropriately where knowledge or service is not available in their clinic eg if bandage or scleral lenses might help or there is no one qualified in children's disorders or prescribing.

Centres of Excellence like Moorfields are established to concentrate funding and expertise, to which we should be referred as needed - blockages seem to be mostly due to doctors' lack of knowledge or confidence.

Until audit data is easily available through NHS-wide electronic records, patient experience is tracked through PALS.

Of course, the doctor-patient relationship is most important and to be nurtured in mutual respect. So nice to find a good doc we can talk with. #Just sayin'

[lizlou29]

I contacted my eye clinic regarding the pressure check, after being told by the nurse I'd be fine I said I wanted to talk to an opth, she wasn't happy but eventually I got a call back from the opth whom I happen to have lodged a complaint against (oh joy). He said if I didn't want to use the steroid drops then not to use them. I said surely then the inflammation isn't being brought under control and he told me as I'd been through so many eye drops and hadn't liked the lubricating drop he recommended then it was up to me which drops I use or don't use. I told him I will go to my local opticians for a pressure check and he just said ok. Think I will have to stop the steroid drops as my eyes feel very very bad today. Not exactly sure what to do next but I guess I wait until my assessment with the consultant next week then probably onto Moorfields if needed.

[lizlou29]

Farmgirl - Does the gabapentin cause any dryness do you think? I was prescribed Lyrica (pregabalin) to help with sleep but I didn't find it helpful, I think it is in the same family.

[Guest]

Farmgirl - Does the gabapentin cause any dryness do you think? I was prescribed Lyrica (pregabalin) to help with sleep but I didn't find it helpful, I think it is in the same family.

Don't mind me butting in ...

Even for drugs that are very closely related, it's possible to totally not tolerate one, and do very well on another... and of course it's also possible to do horribly on both, or to do fantastic on both... you never know until you try it. And as I'm sure you know, results can vary widely from person to person. Personally, I think if it's offered, it can't hurt to try it and see...

[farmgirl]

Honestly lizlou I couldn't tell you if the action is the same, perhaps ask a pharmacist. As regards dryness of eyes I see it listed as a possible but infrequent side effect. If there is one thing I have discovered in life it is that there is no magic pill and what works for one does not necessarily work for another. Perhaps you weren't taking enough, perhaps your method of taking it was incorrect. I am supposed to take mine 1-2 hours before bedtime. If I take it and pop into bed it obviously won't work well as I will lie there awake thinking it isn't doing a thing. Who knows. Really you would just need to try it for a few weeks and if you are no better off than before, then quit..that's about all I can say.

I have been taking the drug for 15+ years and have had dry eyes for 4 so for sure I am not blaming the dry eye on the drug. You stated that the drugs you are taking for sleep and depression are making your dry eye worse so hopefully it would be better than those drugs which are known to make eyes dry. Sorry I can't be of more help but I am not an expert, I just know that I will never be without it dry eye or no...cheers...F/G

[littlemermaid]

Lizlou, Just want to make sure that you have the OSDI (Ocular Surface Disease Index) from the DEWS report in case it's helpful next week when you have to describe to the eye docs what this pain is like http://dryeyezone.com/documents/osdi.pdf and that you've seen Rebecca's Coping 101 section in Dryeyezone http://dryeyezone.com/encyclopedia/coping101part2.html

If you see Sheraz Daya, maybe ask him about PROSE lenses for the future in case he's up to speed from US, otherwise it'd be Moorfields for that question http://www.bostonsight.org/. Apart from astronomic cost, I guess it depends what stage you/LM are at and whether you can be brought to comfort with UK best-available. Scleral lenses are available UK in regional centres according to the dry eye severity - the skill is in the specialist fitting and lens type (keratoconus forums are good on this) http://www.dryeyesmedical.com/treatments.aspx

I'm not seeing why NHS QVH isn't treating according to protocol eg they must be used to Sjogrens and GVHD patients, but best to see what they can do in consultation otherwise as you say it's Moorfields. Yes, we know these are difficult long-term conditions but left unmanaged, the impact on lives can be terrible.

[lizlou29]

I've just come back from a few days away which given my current situation wasn't the break I wanted it to be.

This morning I had my appointment with the consultant. He said I have aqueous deficiency as well as evaporative dry eye. He didn't understand why I had the level of pain I do but said people feel pain differently. I had a blood test for hormone levels as he said low testosterone could be a factor. He said he hadn't heard of anyone with ocular rosacea finding warm compresses worsen their eyes and said other than lipiflow there is not much I can do to clear the glands. I asked about Azyter but he said there is no infection so it won't help. He recommended a humidifier on my desk and wraparound prescription glasses. He hadn't heard of PROSE. He wants to see me again in 6 weeks. I'm not sure how I feel as I haven't been offered any particular treatment and unless the blood test reveals anything I won't be any further forward in 6 weeks time.

[Guest]

He wants to see me again in 6 weeks. I'm not sure how I feel as I haven't been offered any particular treatment and unless the blood test reveals anything I won't be any further forward in 6 weeks time.

To stay productive and moving forward, why not try Rosacea 101? (focus on the rosacea diet) http://www.amazon.com/Rosacea-101-In...ds=rosacea+101

Since you have rosacea, it seems to me like a good place to start... why not? It's not like you have any other treatment on the go over the next 6 weeks... Maybe you'll luck out and it'll hand you your miracle meibomian gland cure on a silver platter like it did for me? We do have rosacea in common, so you never know...

[lizlou29]

To stay productive and moving forward, why not try Rosacea 101? (focus on the rosacea diet) http://www.amazon.com/Rosacea-101-In...ds=rosacea+101

Since you have rosacea, it seems to me like a good place to start... why not? It's not like you have any other treatment on the go over the next 6 weeks... Maybe you'll luck out and it'll hand you your miracle meibomian gland cure on a silver platter like it did for me? We do have rosacea in common, so you never know...

I know you're right, I need to try something but at the moment I just feel paralysed by fear as I'm basically housebound and in so much pain I don't know how I'm getting through the day.

The consultant told me to stop the sleep medication as it's so drying and to tire myself by running but I don't think he understood that my sleep problem is servere and my eyes are so bad I have to keep them closed a lot. Also exercise causes a rosacea flare. I feel so stuck and it's not something I can manage with a humidifier and eye drops. He said going private at Moorfields wouldn't help as they couldn't offer me anything different to the NHS. I know he doesn't understand that I have no life because of this.