having real problems with this grittiness!

[lulu]

Hi
I just hope soemone might have a take on this.
I have suffered for several years with dry eyes, with various symptoms of severe dryness, big pain and watering. This latest one is really getting me down. I know "grittiness" is a very common symptom of dry eyes and probably varies, but somehow I think I would rather have the other sensations, as troublesome as they are. I dont have filiments or anything.
Does anybody have any thoughts on this as it is driving me nuts, quite literally! I have a few thoughts and will list them. Any input would help calm me down and start to deal with this latest symptom. The foreign body sensation is just like having something in your eye but no matter if you look there is obviously nothing there. I wear wrap arounds and googles, use cyclosporin eye ointment at night and sparangly use non preserved eye drops throughout the day.
1. Does anybody find that there flares start like this and then progress onto something else?
2. Does anybody find that the feeling is present at some points throughout the day but not all of the day?
3. Over the years, have some peoples dry eye presented as different symptoms, if they have flares and then better times?
4. Does any drop help any better for the grittiness/foreign body feeling.
I have little heat on as its getting colder, but always have a humidifier to keep air moist.
Its odd but this is really getting to me and I feel a little panicky about it. Avoiding shops and went out the other night to my brothers who had heat on and it was really awful.
Just hoping that I get used to this in time if it wont go.
Any help desperately needed as just want to sit and cry.
Thanks

lulu

[DrGary]

lulu,

A few nuggets:

1) Grittiness, pain, and more commonly "something in my eye" is typically caused by something called "superficial punctate keratopathy" or SPK. It is more noticeable if you have never experienced it before. See your eye care professional to be evaluated. He may choose to remedy with a short term drop and long term with more regular use of a PRESERVATIVE FREE artificial tear supplement. Also inquire about fish oil, and if this option is right for you. There are no contraindications or adverse events associated with proper fish oil supplementation

2) Tearing is a common neural reflex from the eye structures (cornea most sensitive) to the brain. The nerves carry information basically saying something is not right (dry or irritated). The brain interprets this the same way every time and sends along some parasympathetic fibers to your lacrimal gland to make you tear to try solve the problem. The main problem with this response:

THE REFLEXIVE TEARS ARE NOT PHYSIOLOGICALLY THE SAME AS BASAL (normal) TEARS AND DO NOT PROVIDE ANY EXTRA CORNEAL PROTECTION. Rather it is mostly just water.

To ameliorate the problem, the cause of the tearing must be eliminated - notably dryness and inflammation.

Hang in there - I have faith you will improve.

Dr Matter

[lulu]

Thanks for the reply DrMatter. What a find to have an optometrist reply!
Can I just ask what you mean about the "short term drop", is it something specifically designed for this problem? Just tried taking Demethasone steroid drops for one day! as could not tolerate extra dryness. I am using preservative free drops as often as I dare (too many can make them just as bad). Saw opthalmologist 3 weeks ago and due in again next Monday. So I would be gratefull if you could give me some pointers to bring up? I have been using high quality fish oil for 2 years but maybe I need to overdose on it? I am told I have Sjogrens, blood work negative but lip biopsy positive and as I have anti phospholipid syndrome and Interstitial cystitis too, it kind of fit the clinincal picture. I dont know why but secretly I am still a bit sceptical myself on the diagnoses as I have a strong basis for clinical proof. However.
Thanks for taking time to answer my questions, this "new" symptom really tries my patience, and I am trying hard not to rub the eyes as that only works in the short term.
Thanks
lulu

[littlemermaid]

Drmatter,

Do you have a reference for gritty sensation being specifically caused by SPK? Much obliged if you do.

I am also interested in reduced sensation on the eye surface and how it reduces tear reflexes. Does reduced sensation only happen to children as the eye surface changes? (LM is a paediatric case, MGD started age 11.)

Lulu, dearly hope your ophthalmologist takes good care of you on this, esp if grittiness is a sign of some damage.

[lulu]

Apparently no damage, according to optho on Monday.

Little Mermaid
Thanks for your good thoughts. I saw the optho on Monday just gone, (actually it was not my normal dr but a registrar) Naturally they had decided to reflex tear, hadnt they! The little buggers, what a pain as he said the surface looked okay and whilst I should be thankfull for this, and i definately am, it does not really depict what they are like most of the day. He did remark that they looked irritated and red but that the cornea was okay. An afternoon apointment is what I need again.
He did also after I mentioned the grittyness, something about protecting them from infection so does this grittiness really imply something is afoot? I tried to get out of him the exact mechanism of the sensation, was it dry spots etc, but I dont think he really explained. I am now assuming this is the dry spots as he could see no "deposits" consistant with SPK.
I see you are in the UK, have you a good opthamologist?
Lulu x

[littlemermaid]

Hi Lulu, good to talk. Nope. We are currently between ophth. I am not happy. Good that they haven't seen SPK. I am still confused about how they distinguish between dot lesions and deposits, either surface or sub-epithelial; they tell me they look similar to the generalist, big difference in aetiologies. It's working out what they know/don't know that's the trick, ain't it?

Have you found a cornea/surface disease specialist? If you are comfortable with your normal doc and you think the registrar's missed something, I wouldn't hesitate to 'phone up on a bad day and explain how it's worse, ask if s/he'll have a quick look. This involves finding out which days they're in.

PM if you want to talk docs. (PS info, there are contraindications with fish/flax oil oversupplementing if you have liver disorder, lipase deficiency, or our derm aetiology inc sebaceous overproduction or seb bleph. Obviously this isn't most people and the goal is to maintain meibom and help with inflammation so no reason to overdo it, esp if meibom is fine. I'm wondering about oils and your anti-phospholipid condition.)

[lulu]

anti phospholipid

Hi Mermaid
It is an interesting point. The thing I do feel reassured about though is that the fish oil is meant to be a natural anticoagulant and as my blood tends to be a bit stickier, I hope that this helps. Have you another thought about this though? I am interested what you think as I prefer to no longer take the mild plavix that they prescribed. It seems that you get very dependant on these antis and the longer you take them the more chance of a clot if you miss a dose.
I am due to see the corneal specialist in December again and this time I am going to make sure that I see him, I have thought about this and although the Registrar seemed pretty clued(even gave me a free bottle of very expensive drop!) I still have some questions to ask my normal guy.
Incidently if you do come to Aylsham on hols, he is quite a well thought after chap, I can PM you his name if you like.
I had only just read of SPK just before the poster mentioned it, it says that sometimes it can go away on its own, are dot lesions consistent with corneal dystrophies then? like "fingerprint map dot" or Fuchs. I remember worrying about this when it all started and I paid privately to see another corneal specialist whos special interest was dystrophies, he said that he could see no evidence of them back in 2007.
The cornea is fairly amazing but personally I hate mine at the moment, they are not my friend!
Hope you are well.
Lulu

[Colin P]

You mention that S.P.K can go-away on it's own.. Well i'm living proof of that!.
I never chaged anything; it just went.... (still get other symtoms though!) So dont give-up y'all !!...

[MaryVa61]

Lulu,

Another thought is that the reasons doctors weren't seeing much in my eyes to cause pain, as my filaments were always tiny during appointments (of course!), was that it was the inner lid that was so painful. Blinking caused the tiny filaments to rub against the irritated inner lid. The docs weren't very focused on lids, didn't even seem to look at them until I noticed the redness and specifically asked about it. They also wouldn't comment on the filaments unless I asked if they saw any. Those must be commonplace. They didn't seem to realize how painful those two problems can be, especially together. Turned out to be due to my skin allergies and allergies to some of the drops, but I and allergists and dermatologists had to figure that out, not the eye docs. The allergies caused the dryness too and I think it's the dryness that creates the filaments...

The foreign body sensation and grittiness did vary througout the day and I eventually figured out it's because the filaments varied throughout the day. I'd feel them before they were large enough to see. Some were very mucus-y and went away quickly, so pain would calm some.

Mary

[lulu]

Hi Mary
Sorry I am being a bit of a dunce today, but what do you mean by inner eyelid? I think you mean the inside of either the top or bottom of your lids? Sorry one of those days for me.
I have looked for filaments at different times of the day, even under very bright lights and still can see nothing. When I see my Optho again in Dec, I will especially ask him about these. I am starting to be very carefull about eliminating stuff from both my diet and what I put on my skin and face, I am making my own stuff to be very very sure.
Glad you are getting to bottom of this.
Lulu

[MaryVa61]

Hi Lulu.

Sorry it took me so long to get back to you. Yes, by inner lid I meant the inside of the lid. It's my lower ones that were getting so red and painful. Still have a flare up on occaision, but nothing like in the past. I hope something helps you too.

Mary