my recent optometrist appointment

[poppy]

I posted a while back that I had been experiencing pain of the head, jaw and eye socket that was at times severe and seemed to me clearly to originate from the eyeball. The pain didn't follow any normal pattern of headache/migraine (came and went suddenly, could last seconds or hours). So, I went to the dentist just to rule out a dental problem. Dentist said no problems. Went to my GP and explained the problem, although did not mention that I felt the problem was coming from my eyes. GP was quite thourough and admitted he really had no idea.

So, I went to optometrist to have my eye pressure checked in case that was the cause: eye pressure high end of normal, like usual I think. I didn't have the head pain at the time. Optometrist was decent, looked inside my eyes (not dilated though) couldn't find anything, did a retinal photo which seemed normal, and I am going back for a visual field test and another eye pressure check earlier in the day (as optometrist said eye pressures can be higher in the morning). Optometrist suggested I should see an ophthalomologist about this problem but just wanted the result of the visual field test to give to them first.

My question is: given how useless ophthalmologists are with dry eye, are they going to be any better with this problem? Is it worth my emotional and financial effort to see one about this? Are there additional tests I should ask for, and is the ophthalomologist likely to agree to do this? I really feel the eye doc is going to just see the dry eye and say pain and photophobia = from dry eye, NEXT PATIENT.

As an aside, this optometrist mentioned to me a similar thing that I've been told before, can't recall the exact words but the surface of the eye is a bunch of scar tissue, making it obvious that I've had the problem a long time. Scarring is mostly on the bottom third of the eye. Does this pattern of scarring indicate anything in particular, and how can this worsening scar tissue and chronic punctate keratitis possibly be benign in the long term?

Thanks for listening

[littlemermaid]

Scarring is mostly on the bottom third of the eye

I think it suggests keratitis (non-viral) from exposure/inflammation, or night-time lagophthalmos (Dr Latkany's book). (If SPK is more central, they think of post-viral, fungal, other, surface or sub-epithelial infection.) Punctate keratitis without infection means ongoing dry surface inflammation, but we know that; some of the PK could be sub-epithelium, eg cellulose bonds loosened between lower layers. The toughened surface is reducing your tear film by reducing the tearing prompts, including osmosis through the surface.

how can this worsening scar tissue and chronic punctate keratitis possibly be benign

Are they saying it's benign, and not paying enough attention? Are you still on Prednisolone? Can you taper off? What tear substitute drops? fishoil, clean diet, reduced triggers? wraparounds? double-plugged?

pain of the head, jaw and eye

http://www.dryeyezone.com/talk/showt...ave-neuropathy Maybe neuro-ophthalmology referral, or neurology/TMJ - for sympathy and pain meds, unless it's worth the risk of surgery/nerve injection. The optom is right to get visual field results first. Other tests if there's change in optic nerves: ultrasound, tomography, electrophysiology, regular retina exam. TBH, not met a neuro-ophth who knew anything other than back of the eye, very happy to be wrong.

Time and emotional? Yes. Money on neuro-ophth? Don't know. Money on this optometrist for monitoring? Definite yes. If there's vision changes, the neuro/neuro-ophth can medicate. [Looking for refs for the above rambling]

[abbygirl]

poppy- Could you please describe your eyeball pain alittle more?? Does it happen at the same time of the day? Does it start out soft and end up as a migraine-type pain? Have you had cataract surgery? I have similar pain and mine comes on in the early morning hours..between 3am and 7am and only in my left eye. I have had a lens replacement plus numerous other procedures on this eye and I use a pressure drop once in the am. I have been to numerous doctors and no one can give me an answer. I am beginning to think that my pressure is spiking in the middle of the night and this is causing the pain. Have you had your pressure checked while you are experiencing the pain? I am trying to figure the pain out too!!

[poppy]

Hi abbygirl,

My pain is so unpredictable and varied it is difficult to describe, but:

Can happen at any time of day, the two most severe attacks I've had have been in early to mid morning.
Can be in either eye or in both at the same time.
Can start with slow aching and progress, or can come on suddenly with intense pain and go away just as quickly.
Attacks can last for seconds or hours.
Pain can be in any part of the head, including the back or top of the head, upper or lower jaw, eyeballs, eyebrows cheekbones...
Can be like a drill in the skull or temples, a throbbing of my eye ball and surrounding area, or a milder aching.
Can happen dozens of times a day or not at all.

I haven't had my eye pressure tested during an attack. I do know from the times I've been told my eye pressure and remembered, it ranges between 18 (this was at lunchtime) and 20 or 21 (this was first thing in the morning) and my understanding is as the optometrist said early morning your eye pressure will be higher.

I haven't had cataract surgery or any other sort of surgery on my eyes.

[poppy]

Thanks for your reply LM. When I say it's benign, I'm just going off the standard BS speech they all give you when they are trying to get rid of you... but it is true that we are told time and time again that dry eye and bleph are benign conditions... I think to the point that eye docs can't recognise a non-benign case because they are so brainwashed by what they are taught.

Not on steroids anymore, as gave up bothering trying to get them since they don't do that much anymore. I'm interested in getting an ultrasound, as I've read it can reveal any problems inside the eye that aren't easily seen by the eye doc... especially if, as in my case, they seem to refuse to even dilate the eyes. Don't know how I'd go about getting such a test though, certainly not in our rationed health care system, perhaps overseas such a thing would be possible.

[littlemermaid]

Hi Poppy, Do they really need info for severe dry eye surface inflammation and cornea melt? Even the 'just glad to get through the day' brigade should know this stuff from doc school, even with recruitment problems. Maybe not enough training going on, this filters top-down. It would be so good to hear you've got someone to work with.

How is Mr Happy getting on with the cornea grafting business? I thought he was going for regional public funding.

Ultrasound is standard for hospitals, ours is just on a trolley. Surely your guys have got access to some imaging, FGS? C Eye Clinic have got all the equipment, also Visual Sciences at ANU.

Are you sure you don't fancy S Eye Clinic for a look? I know funding's complicated.

[abbygirl]

Hi Poppy-When you describe your pain can you tell that it starts in the eyeball?? My pain always starts in my eyeball and as it progresses hurts up into my forehead, jaw and head in general. I have had CT scans (suspected Thyroid Eye Disease) and MRI..all negative except for the fact that my eyeballs themselves are unusually large.

It doesn't sound like you have a pressure problem..anything under 21 is considered normal. My doc says pressure would have to be 40 and above to cause pain. This would also cause foggy vision and or halos around lights.

[Rebecca Petris]

Poppy... trigeminal nerve involvement perhaps?

[poppy]

Hi abbygirl,

My pain almost always feels like the origin is in the eye ball, but doesn't necessarily start or even come with eyeball pain. For example, a sudden drill like pain in the back of the head might not be associated with any eyeball pain, BUT it feels like the drill was aiming directly for the back of my eyeballs.

Interesting that eye pressure has to be that high to get pain, I've had bad haloes around lights before but I think it was due to bad inflammation of the corneas and went away after tons of steroid drops.

[poppy]

Hi LM, sounds like you have managed to get ultrasound for your daughter before from public hospital? How did you manage/justify this? I'm sure I can find a hospital nearby who has the equipment, but if these guys won't even do a dilated eye exam with all these pain symptoms not to mention photophobia and inflammation etc, how on earth do I manage to justify such a procedure? Docs don't seem to realise that patronising and dismissive remarks do not reassure patients with very real symptoms. I think such a procedure is justified if only for my mental health, if only I lived somewhere that didn't have a socialised health system it would just be a matter of asking and coughing up the dough.

Don't really know how Mr Happy is going, did you read some news about him?

[poppy]

Poppy... trigeminal nerve involvement perhaps?

Thanks Rebecca, don't think this is case as my GP was quite thourough and seemed to check me out for neurological problems, as far as I know...

[littlemermaid]

Poppy, How did you taper that 4/day prednisolone carefully - reducing week by week?

Justified neuro-ophth investigations (ultrasound, OCT, MRI) by papilloedema on optic nerve heads + persistent headache pain + confusion + transient visual disturbances (camera-shutter, peripheral wavering). They could see the optic nerve heads without dilation, esp with the handheld lens thingy that opens up more of the view of the retina (this is what they do paediatric sometimes). Maybe they're not keen to put dilation drops on your sore surface cos they normally bung 'em in first job without asking, preservatives and all.

Time to report this pain. You never know, they might have employed some brainy young thing since you were last there. One good current kind ophth to work with is all you need.

What were the visual fields like? It's true, you wouldn't feel raised eye pressure so good to keep vision and IOP monitoring with this decent optometrist. Have you got any meibom at all?

Have you made friends with Patient Liaison?

Nope, I'd just read he was developing the service, as it were. Maybe better to haunt the place now.

[Jenn1]

Hi LM, sounds like you have managed to get ultrasound for your daughter before from public hospital? How did you manage/justify this? I'm sure I can find a hospital nearby who has the equipment, but if these guys won't even do a dilated eye exam with all these pain symptoms not to mention photophobia and inflammation etc, how on earth do I manage to justify such a procedure? Docs don't seem to realise that patronising and dismissive remarks do not reassure patients with very real symptoms. I think such a procedure is justified if only for my mental health, if only I lived somewhere that didn't have a socialised health system it would just be a matter of asking and coughing up the dough.

Don't really know how Mr Happy is going, did you read some news about him?

Hi Poppy,

Sorry to hear about your troubles, but sounds like the UK NHS atm, with the influx of EU citizens, its all about the dough here too and I am yet to see the eye specialist for my TED, so frustrating! Cant you exaggerate your symptoms a bit or changes in vision to get the ultrasound or eye dilation, worth a try and maybe a few tears to help? I hope you get seen to asap and keep at 'em.

[spmcc]

My pain almost always feels like the origin is in the eye ball, but doesn't necessarily start or even come with eyeball pain. For example, a sudden drill like pain in the back of the head might not be associated with any eyeball pain, BUT it feels like the drill was aiming directly for the back of my eyeballs.

Hi Poppy,

My thought was maybe you could get a referral to a pain clinic. I suggest this because (1) your doctor may be happy to refer you on (just in the sense that he/she realizes he/she can't really help you) and (2) it might be the best route to access such tests as CT/MRI.

I got into a pain clinic in Canada quite quickly and easily (once it was suggested in year 16). The doctor was a retired ENT but, I guess because his "job is pain", he took it all *very* seriously. It was nice.

Good luck.

[mgshutterbug]

Poppy, I'm not familiar with the health system set-up where you are. I don't understand why no one would dilate your eye. It's not brain surgery. I have neuropathic pain in my L eye from damage from a botched neurosurgery on the trigeminal nerve. It initially was much more painful in the eye for the first 6-12 months after the surgery. The pain has diminished, though I do still have gritty feeling continually, foreign-substance in eye feeling alot of time. I found out that heat (accidentally too warm water - was actually hot) caused like lightening bolts of pain in my eye, from front to back. Lasted 7 1/2 hrs from one dollop of too warm water in warm compress. Anyhow, because of damage to TN, I also get pain in face, superficially in skin in front of ear, in my upper and lower teeth, 1/2 my nose...I know it's not identical with what you're experiencing.

And I hope you meet up with a decent corneal specialist who specializes in dry eye disease. I have just found a really good one in the U.S., in Maryland. She seems to be young, but you can never really tell. Anyhow, she's highly knowledgeable, gentle, and really listens to what you have to say. I ask lots of questions, she is patient with answering them. There's got to be someone in your area or nearby that knows something! Best of luck to you.