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**littlemermaid** · 05-May-2013, 02:46

Hi Poppy ~ I'm doing my neuro-ophthalmology from Timothy Root on YouTube, which is about as much as I can manage http://www.rootatlas.com/, http://www.ophthobook.com/, Wikipedia eg 'eye cranial nerve'

Are they doing optometrist tests for your vision? They should also be checking your eye and pupil movements extremely carefully http://www.dartmouth.edu/~dons/part_1/chapter_4.html.

What do you think this might be? Have you got any other neuro or pain symptoms? Any vision symptoms not related to eye surface dryness like double vision or obscurations? Have you had MRI or CT or neuro-ophthalmology exam? Are you on systemic meds still? Are you maintaining the eye surface OK or still got damage?

Do you think it's eye surface pain down the nerve? Addressing the pain of corneal neuropathy, Karmel, AAO Eyenet 2013 There's some anatomy in here Dry eye syndrome, Stephen Foster, Medscape April 2013 One question might be whether it's pain down the nerve off the cornea, or whether there's other pain off that nerve Trigeminal neuralgia, Mayfield Clinic

I've looked into paying a patient advocate to come with me

Oh yes. Love to pay a doctor to manage all this, ask the questions, do the research, coordinate specialists, enable consultation on treatment between them, understand and summarise the Notes again and again, present the case fast to allow time for questions and discussion, present history without emotion including impact on life and pain, cut through underqualified staff without alienating anyone, monitor meds prescribed by different docs including noticing contraindication, find out what tests were actually done and get results. Does any country in the world have professional coordination of 'complex', ie normal human, conditions?

Preparation has been the key. They can't overlook a clear Symptoms Diary and it helps give a fast and accurate history to base examination and consultation on. Also organises the head, externalises the problems, helps separate the emotional part.

Have you got your complete Medical History typed up in short form for this consultation? That's been useful. One Registrar said 'I sense some dissatisfaction here', and I said 'I've just typed a summary of what happened, meds and doc letters, this is what it's like'.

We keep a Symptoms Diary on pain, impact on life, vision problems, meds, drops, especially flareups.

Also been useful with non-listening brush-off docs, hand over without speaking typed list of 5 or 6 short questions eg 'why do you think my eye pain is cornea when it is so bad behind the eye?' 'what are the signs of uveitis?' 'what causes so many sudden-onset floaters?' 'how can I get my eyes comfortable?' 'what do you think ocular rosacea is?' 'what's wrong with my eyes?'

What's happening in these consultations, Poppy? Why are you not getting a conversation? Is it because they don't know the ophthalmology? Do you think there are other investigations they can do at this clinic? Or should they refer you to a tertiary hospital?

Is there anybody in the department who you haven't seen who has the right experience? To see a specialist consultant can make an unbelievable difference. We always assume they confer and that there are minimum standards but they actually behave independently pretty much.

Part of the doc job is, of course, management and support for undiagnosed, or relieving chronic, conditions. These days what I'm really interested in is getting the best out of them. If they don't know, I can work with that as long as they've got the integrity to say so. Then I can ask someone else if need be.

Are these guys any good? A kick-ass ex-District Nurse to go in there with you would do just nicely http://health.act.gov.au/health-serv...nteer-service/ Failing that, I keep wondering if you could pay a nurse to go in there with you as advocate, it's not unknown. They are also encouraging coordination and feedback on chronic disease management http://health.act.gov.au/health-serv...se-management/

Looking back at times when I was consumed by rage and frustration, most useful has been to ask myself 'what do we need/want' and how to get it. After counselling, we've introduced a 'more harm than good' rule and realised some docs are a waste of time on knowledge. You and your wellbeing come first - I would only pursue things that help you.

IME just one ophthalmologist on our side can be enough to make it bearable, whatever state the eyes are in. Ideally, what are you looking for? Where would you go for bandage lenses, for example? x

**poppy** · 06-May-2013, 03:11

Hi LM,

Thanks for your reply. I have been to optometrist and had visual fields and eye pressure test which were OK. My GP did ask me a heap of questions etc and didn't know what my head pain was. I didn't tell him I thought it was eye pain though, the hateful letters to my GP from the crappy eye docs I've seen have made me learn not to mention eye problems in front of my GP. Yep I have vision disturbances not related to eye surface dryness but docs and me agree it's not eye problems. Had a brain MRI a while back which showed nothing. I don't believe we have any neuro-ophthalmologists in the ACT and any we have in Oz I believe require referral from another opthalomogist, so hard to get as you have to make an eye doc believe you which is harder than a GP who just feels out of his depth. Same goes for ocular immunologists in Oz, must go through an eye doc not a GP. I don't have my husband anymore so have also lost my means of going to Sydney for a day as that is basically an impossibility for me to do on my own.

The links you posted suggest there may be some kind of patient advocate services in the ACT, I wish they had an online form to fill out or more online info. I'm a mess to try and even call a doctor's receptionist at the moment.

I really believe this pain isn't related to corneal or surface pain, but I strongly believe that it definitely comes from somewhere in the eye. I mean, I know my ocular surface is trashed at the moment and even Dr L who I guess sees some of the worst dry eye patients from all over the world described my surface scarring as impressive. At the moment I know my ocular surface is taking a beating and I have erosions but it is not the worst it has been and I still have this worsening eyeball and head pain that was never there in the beginning.

I believe this eyeball and head pain is most probably caused by an inflammation that has spread inside the eye, or came originally from inside the eye, but the docs continue to ridicule me and not investigate. I mean, not only do I have this eyeball/head pain, I have severe external inflammation that doesn't respond much to steriod drops, and I get attacks of crippling photophobia worse than what I've had with a corneal ulcer, in the clear abscence of such, the photophobia only goes away semi-permanently with tons of steriod drops. A doc will just blame this photophobia on abrasions or erosions, but I know these things don't give me photophobia. Then there are the extreme floaters - docs just laugh or get pissed off when you mention this - but seriously my entire field of vision is literally filled with thousands of thousands of floaters, just a swirling cloud of multiple layers of crap filling my entire field of vision and at the rate it is thickening I must be getting numerous extra floaters every day (there are way too many to notice an additional dozen floaters unless there is a really HUGE or distinctive new one) - I just notice every couple of weeks the cloud is even more thick and wonder at how I can even see through it - NOT normal in my firm opinion but try telling the docs that. Interestingly, I did contact an ophthalmologist online who is in the US and is trying out new ideas to help sufferers of severe floaters, and is generally belittled by the ophthalmologist community. He answers questions as to whether his new laser treatments could help with your floaters, and whether it might be worth travelling to see him. So I asked him this, and added that I had these various symptoms and was concerned whether I could have some inflammation inside the eye and asked if he thought that an ophthalomologist who had examined my eyes through a non-dilated pupil would have easily been able to see if there was any inflammation inside the eye. Well, it was not so much what he said in reply but what he didn't. He DIDN'T reassure me that if numerous eye docs has said it was OK, that it was fine. He DIDN'T say, get yourself a dilated eye exam and you will be fine. He DID say, sure sounds like worrisome symptoms of potential intra-ocular inflammation and get yourself to a uveitis specialist. Which I can't do as it requires an eye doc who is able to diagnose such and refer

**littlemermaid** · 06-May-2013, 03:44

What kind of visual disturbance are you getting, Poppy?

Floaters are easy to see through the ophthalmoscope. Are you sure it's not another type of vision obscuration? We are dealing with some neuro-ophthalmology and LM sees all sorts of dots and grey-outs from raised pressures in the head which is 'normal' for her, some of which we are managing partly with stress reduction and exercise eg your blood pressure may be high too with all this going on. Doesn't necessarily mean mass in brain. Any chance it's optical migraine?

LM has scarring too now so par for the course - it's been a question of maintaining the eye surface in flareup and everyday life eg on computer.

Do you think Colin Chan could get you into Sydney Eye Clinic if you want them? I'm thinking bus. There's always a way. Rule #1, ignore the rules. Although some of those guys in ACT are part-time in Sydney, I notice.

There's a massive load of stress and pain of various kinds here, Poppy. I'm guessing that, like me, you're not the kind of person who asks for help easily and after all this, like me, you are pretty doco-phobic, although I'm getting a vibe you think some of them are OK these days. To be fair, the next consultation may be great, especially with preparation.

On your question list for the new ophth: is it uveitis? can just anterior segment 'dry eye' inflammation be this difficult? Pretty sure one of them can recognise uveitis or retinopathy. What we are looking for is a massive load of reassurance and confidence from a good eye doc and to be taken seriously.

I would consider tottering down to Patient Liaison or volunteer service or whatever they call themselves there and chewing it all over. You definitely need someone on your side, dealing with this level of *. Write a note and post it if phoning isn't a plan just now and they might send someone round. Many of my friends are volunteers for this kind of thing kicking butt - nobody seems to retire any more.

Unless you're very anti-, even consider hanging out with any kind of alternative therapy crowd including church.

It is useful to externalise all this by typing up the History, makes it manageable. Even if you need a punch bag next to you. You can always reduce it to short notes for whichever ophthalmologist you get.

These are the things we are doing to make it manageable. And GP must refer you for professional counselling if hasn't already, and I would consider short course of antidepressants or something useful like that to get you through this.

Got friends or family nearby?

**poppy** · 06-May-2013, 04:19

Hi LM,

Most annoying visual disturbance I get pretty much 24/7 now is a spot in central vision where there is no vision at all that lasts only a second but then disappears and often reappears a millimetre or so away. This happens on average about 100 times or more per day. This visual disturbance alone, putting aside all other issues, makes it unsafe to drive under stress especially long distances, as stress guarantees an attack of black holes in central vision. I know, I could go Sydney via bus but that would probably include an overnight stay but I just can't deal with that. Loss of income (I get no sick pay), going through a divorce with lots of expenses, hotel bills, who to look after the dog, massive stress etc. I am putting my hope in my visit in a few days with a reasonably decent doc (relatively speaking). The last time I saw him he seemed genuinely interested in the nature of my eye ball pain. At that stage it was limited to a kind of throbbing pain within the eyeball itself. I can only hope he will try to investigate the spreading of the eyeball pain to all over the head.

I am sure my floaters are floaters. Docs however typically see only a handful of floaters but I have read that many floaters that are close to the retina, that are extremely obvious to the patient, the eye doc cannot see at all.

Anyway, wish me luck for Friday guys

I feel it's pretty much the last chance I have because I don't have the energy to fight anymore.

**littlemermaid** · 06-May-2013, 05:06

I am putting my hope in my visit in a few days with a reasonably decent doc (relatively speaking). The last time I saw him he seemed genuinely interested in the nature of my eye ball pain.

Yeeeeees. Thank god, yes. That is all we ever ask. I like him now.

Tell him about the frequent loss of vision spots in detail so they can do the retinopathy tests. He needs to listen to your history and have a really good look.

Does the central vision spot happen eg when you bend over or cough? and vision comes back? does it have related headache? is it both eyes? any light flashes with it? Plenty stress and inflammation-related retinopathy, vitreous, neuro-ophthalmology, it could be. Far as I know, he should do OCT behind retina if he can't see anything on the surface.

Something of a relief they are floaters but they must not dismiss the quantity or sudden-onset. Surely they do standard screening for vitreo-retinal, AMD etc.

Surprised the optometrist hasn't picked up on this.

Maybe, as you say, they are distracted by history of cornea symptoms and should refer to retina clinic. They must take any temporary vision loss seriously.

Also, have you had a general health check with full bloods inc hormones recently eg diabetes? blood pressure?

my plan is to bring along a brief written statement of my clearly worrisome symptoms

I was brought up to be seen and not heard, especially around docs. But that's another story. But this is why I write the symptoms history down, as you say Poppy, and just hand it over, then it flags up anything missed. One Neuro Registrar said 'please don't stop doing this, it's such a relief'. Plus we've got our complete file of doc letters and test results to take in case it's useful, hidden till the opportune moment. It's been about getting the best out of them really. Hope this helps.

Be nice to the eye doc. Love to the dog. Go to bed! It must be the middle of the night for you ~ I'm going out to do some gardening now, the weather's fantastic. Sounds like you might not have to fight anymore in follow-up and management with this one. Wish you very very good luck on Friday

x

**littlemermaid** · 07-May-2013, 13:56

Difficult to work out how to help from the other side of the planet, and being English we do not normally do motivational videos, but I thought this lady was not half bad http://www.ted.com/talks/amy_cuddy_y...o_you_are.html. Just bin it with my apologies if it's not going to be helpful.

Another weird comment is that my friend is a consultant's wife and she advised 1. find a doc who's interested in what you've got, and 2. dress smart. I was very irritated by 2, thinking 'these people are there to heal the sick, what has that got to do with it', but lo, it turns out to be not bad advice, and I usually upgrade now by a notch eg best shoes, jacket. Why this matters to them I hate to think, but it has helped me feel more confident and to ask what I want to know on the basis it's a professional consultation.

It is scary, I know. I hope you can find someone to go in there with you. Certainly in Oxford we can request a chaperone from the volunteer force, particularly recommended by the eye clinic.

**spmcc** · 07-May-2013, 15:05

Originally posted by littlemermaid View Post

Another weird comment is that my friend is a consultant's wife and she advised 1. find a doc who's interested in what you've got, and 2. dress smart. I was very irritated by 2, thinking 'these people are there to heal the sick, what has that got to do with it', but lo, it turns out to be not bad advice, and I usually upgrade now by a notch eg best shoes, jacket. Why this matters to them I hate to think, but it has helped me feel more confident and to ask what I want to know on the basis it's a professional consultation.

My great-aunts always dressed up to see their doctors. They said they wanted to look worth saving.

**littlemermaid** · 08-May-2013, 09:12

'When doctors don't listen' http://soundmedicine.iu.edu/segment/...-communication Interview with Leana Wen, M.D., emergency physician, Harvard�s Brigham and Women's Hospital, Massachusetts General Hospital, co-author. These ideas may or may not be useful on how to get more out of these professionals. Certainly loads of questions has been the best way to find out what they know/don't know/think.

**Scout** · 09-May-2013, 09:37

Poppy,

I have similar symptoms (one eye, deep debilitating pain, one side (left eye) that spreads eventually to most of left side of head, eventually sensitive to light, nausea and (rarely) vomiting.

Dry eye? Accommodative spasms? Convergence problems? Incorrect correction? Something related to poor LASIK outcome? Infection? Allergy?

Many wrong diagnoses later, my primary doctor concluded it was ocular migraine headaches. I had all the symptoms of ocular migraines EXCEPT temporary central vision loss.

I had a severe reaction to the migraine headache meds so I couldn�t take them anyway, but I wasn�t convinced I was having migraine headaches.

Long story (waaaay too long) made shorter . . . I had a severe infection in my left eye post-LASIK surgery that apparently left that eye extremely sensitive and reactive to environmental irritants and allergens. When an eye (and apparently for me, also sinuses) become inflamed due to an irritant or allergen, they can swell. This swelling can put pressure on the sensitive ocular nerves and trigger pain, sometimes severe.

I have spent the last few years figuring out which substances, fragrances and allergens I am sensitive to and removing them from my environment.

Now, when I start experiencing the pain, I take an over-the-counter medication and use cold compresses to reduce the swelling and inflammation. What works for me (and may not work for others since it can be drying) is Alleve D, which is Naproxen Sodium and Pseudoephedrine.

I have no idea if my experience will help you, but the one thing that I have never had with my severe headaches is central vision loss. This is a common symptom in ocular migraines so you may want to see a neurologist to rule out ocular migraines. It also is a warning sign for macular problems. I think you mentioned already seeing an ophthalmologist, so that probably has already been ruled out, right? It would be good to see a retinal specialist to make sure your macula is healthy.

I hope this helps,

Scout

**Mike G** · 09-May-2013, 20:11

Hi Poppy,

I'm from Canberra too although I'm not there now. People I know have seen at least one ophthalmologist in Canberra and they weren't great (e.g. no apparent knowledge of or ability to identify seborrheic blepharitis - boggles the mind!) but I am by no means saying there aren't good ones in Canberra.

From your posts it sounds like you are at a pretty low point at the moment and are doubting whether you have any more options. This stuff can be really overwhelming on its own and it sounds like you have a lot happening in your life on top of this. But all is not lost! I'm confident that you will be able to find doctors that will listen to you and offer you more. I also hope that things let up a bit soon and you have some time to have a bit of a break from all the stuff that is happening.

A couple of practical points to think about when things aren't so stressful:
1. Having seen a bunch of different GPs and ophthalmologists myself I would recommend (and this is something my dermatologist recommended haha) discussing your previous contact and diagnoses as little as possible too avoid being pigeon-holed as having health anxiety or a somatoform disorder (your symptoms are psychological) and to encourage them to start from scratch in their diagnosis. By all means say that you have seen another specialist but leave out your concerns about previous diagnoses and avoid trying to "scare" them in to doing anything. Instead frame it as your previous specialist was uncertain and indicated that you could consider a second opinion.

2. I would highly recommend seeing a specialist in either Sydney or Melbourne as there are a lot of great ones.

3. You do not need a referral from an ophthalmologist to see a neuro-ophthalmologist or an ocular immunologist. You can make an appointment to see either in their private practice and get a referral from your GP.

4. It is quite possible to do a day trip to Sydney via bus from Canberra. I've done it a number of times and you can arrive in Sydney CBD at 8:30 am and leave as late as 8pm. It is also quite possible to do a day trip to Melbourne if you organise both your flights and appt booking well in advance.

I hope things start to improve soon.

Mike

**poppy** · 10-May-2013, 03:32

Thanks for everyones replies. I had my appointment today. I have managed to get a form for an orbital mri due to my concerns of deep eyeball and head pain. I had to be quite pushy to get this ( I didn't specifically demand an MRI, but repeatedly insisted I had this eyeball/head pain and doubted the diagnosis of "dry eye'). It is funny the things that make you so extra stressed that seem so little to other people. I have got this MRI form, and instead of listing my mobile number they listed my home phone which I'm never gonna answer during business hours. So now next week I'm gonna have to chase these guys for my appointment which is really stressful for me. Probably I should have just asked for a private MRI which costs about $400 with no rebate but is done next day and the patient gets to pick up the report. But I have a problem expressing my opinions etc. Interestingly at my appointment a registrar (who I wasn't seeing) interested in problems like mine asked for my permission to see me and take some photos and so on. He tried to express my glands without any success. He was a believer in hot compresses followed by lid massage and expressing the glands but I kind of feel like, if you the doc can't squeeze anything out of my glands even with numbing drops, significant force etc and so on, how on earth I am supposed to do this on my own with a warm compress and a qtip? Off topic but - why on earth is it that most eye docs never close the door when talking to a patient - today I heard the intricate details of another dry eye patients other medical history. It is not acceptable in any other area of medicine for other patients to overhear your problems so why is it OK with eye docs.

**littlemermaid** · 10-May-2013, 04:02

Poppy ~ ((hug)) If I wasn't very English that would be a high five. Also, another dry eye patient, and an interested Registrar. Sounds like there may be a system to work, at last.

Why are they doing MRI instead of OCT?

What's happening about the central vision obscurations? We do not like the sound of that. Didn't they refer to vitreo-retinal or macular clinic?

It is funny the things that make you so extra stressed that seem so little to other people.

Patronising tone of sweet reason works for me. 'I wonder if you could just make sure that...' 'would you mind checking, just to put my mind at rest' 'thank you so much'. My favourite 'what do I have to do to get...?' 'whose job is that, do you know? oh you do that, do you? well thank you very much indeed, it would be relief to know that's done'. 'Can I just make sure you've got my mobile number on the computer as first contact? obviously, no one's at home during working hours...' Yeah, we can do 'nice'.

**poppy** · 10-May-2013, 05:20

Originally posted by littlemermaid View Post

Why are they doing MRI instead of OCT?

Well, really I don't know and understand what are the differences between the two. I am not even sure whether my eye clinic can do an OCT, whatever that is. I am rather happy to have some investigation of my problems, but don't understand why one should be done over the other. If you can explain to me what the difference is I would appreciate that, as I haven't been able to gain an understanding with the internet articles I've read.

Originally posted by littlemermaid View Post

What's happening about the central vision obscurations? We do not like the sound of that. Didn't they refer to vitreo-retinal or macular clinic?

Yeah I ended up not bringing up the central black holes in vision because I was trying to focus on my major concerns and kind of know that ain't an eye problem (to me, sometimes patients know stuff about their own bodies)

Today the consultant tried to ask me what I wanted to try and I pretty much said I don't think there is any point in trying anything. I just said I had concern about the deep eyeball pain and that's what got me the MRI. He seemed willing to continue to try to work with me, but I just feel there isn't anything else that can really be done.

I do still strongly feel that the public hospital eye clinics are vastly better than the private ones in Australia, however that may not mean very much. At least they have more than a couple minutes to spend with you.

Out of interest, the registrar interested in dry eye conditions took some pics of the outside of my eyes that he showed me. I had what I thought were clean eyelid margins (I clean them twice a day with a washcloth and water), and they look fine in a mirror, the close photos he took of my eyelids were GROSS. They were like some of those crusted pics you see on google images. From now on I will definitely be using a commercial lid wipe just to try to get rid of this disgusting crap.

**littlemermaid** · 10-May-2013, 07:17

I ended up not bringing up the central black holes in vision

What do you think it might be, Poppy? stress, psychosomatic, meds? not convinced x

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