Looking for Hope and Help

[Sunshine8]

Hi,
It all started 3 months ago when I had pink eye. I took vigamox and left my contacts out for a few days and then returned to wearing them (a fresh pair) but I guess I did that too soon and that gave me an ulcer that then left a scar. The scar is not in my line of sight but ever since I have had horrible pain in my right eye. I mean excruciating! I went to the doctor right after that and was treated with tobradex for a week. The doctor said that I could return to wearing contacts but it has always hurt way too much without them to even try. I have always had some dry eye but it was always manageable. The doctors just keep saying it's dry eye but I can't get relief from anything. Well now 3 months later I have a blurry spot in my vision, like a smudge. The doctors have tested me for everything and say it will just go away. Has anyone been through this? What helps? Does it get better? Really looking for some hope!

[socratese]

No idea but your probably should talk to more / other doctors until one can and will help u

[Bill Sonoma County]

Hi Sunshine,

In answer to your first question, yes, several people have reported a severe flare in DED symptoms following conjunctivitis, but to my knowledge no official recognition of this problem exists. Of course you suffered an ulcer-- a serious complication. For the pain you have now, you may well require multi-disciplinary help: primary care, ophthalmologist, psychiatry, pain clinic, etc. and to get people to take this seriously, I developed the DED Symptom Severity Scale.

http://www.dryeyezone.com/talk/showt...tion-Requested

You cut this thing out, find where you are on the symptom scale and take it to health care providers until you find the ones who will take this seriously. And then please give me some feedback so that I can improve the Scale.

As Rebecca said, our disease in many cases is largely symptomatic. Also grossly unappreciated. Trying to bring to light and validity. Best wishes.

[willow26]

link

Hi Sunshine,
the DED Symptom Severity Scale.

http://www.dryeyezone.com/talk/showt...tion-Requested

the link does not seem to work. I would be interested in seeing it.

[Bill Sonoma County]

DED Severity

As Willow said, link not working. Here is a re-post. I think you might need to be logged in to view:


As we all know, Dry Eye Disease (DED) is a symptom-prominent condition. I have articles going back as far as 1998 explaining "Weak association between subjective symptoms and objective testing for dry eyes and dry mouth..." Despite this awareness, clinical emphasis remains on scoring objective signs of disease, even when assessing a patient's level of need for treatment.

My DED has been around for 30 years. Like many of you, my fellow DED-heads, I have lost track of the number of physicians who have said "your eyes look fine" and then dismissed me to my own devices.

So how about we construct a DED Symptom Severity Scale to accomplish two things:

1. Establish and validate the critical role of symptoms in defining DED's impact on a person
2. Provide an easy way for us to report where we are on the symptom severity scale to our providers

I hope this will be helpful in guiding just how much intervention is warranted for a given person with DED. It could also be useful in following changes over time and responses to interventions. Assembled so far is the attached is a spreadsheet "DED Symptom Severity Index" based upon what I have read in other people's reports and what I have experienced. Maybe we could call this the DEZ DED Score.

So, please, lots of input. Be critical. Be helpful. Add your experience.

Thanks

BillDED Subjective Severity Index .xlsx

[willow26]

I like that, I wish every patient filled out a questionnaire that would determine the rating at doctors visits.

I am all about moisture chambers because they provide the most instant relief to me, so I would say I go between a 0 and 1 with post-lasik goggles (which is not an answer because there are no reading glasses built into them and they are not sunglasses for driving); I go between a 1 and a 2 with dustbusters on; between a 2 and a 3 with Ziena Veronas on; and a 3 with nothing or regular glasses.

OTC drops offer only the briefest of relief. Can't keep goggles on during sleep, and sleep is disrupted. What I need is something that has as much seal as post lasik goggles, but with readers and another pair with sunglasses.

I would suggest if this were used as a paper handout, a large print copy would have to be available as well for people who need that.

[Bill Sonoma County]

Thanks Willow, glad the link works.

And thanks for the feedback on Sx Scoring. Ideas for improving this system will be gleefully accepted!

I've been using moisture chamber glasses that I started making in the 1980s. First used leather for side panels. Just bought some MEGs--they're better than nothing but the homemade and the wrap-around gasket glasses are way better for me. When my sx scores are int he 1-2 range, I'm pretty happy. Been at 3, 4 and some 5s in past. That's desperation and you have to walk though the minefield of "your eyes look fine, keep doing what you're doing" to get to places that will truly listen.

Yes, we should be entering providers' offices with copies of the Sx Score sheet in hand, numbers and sx circled, and large print copies for those who need them. The whole idea is to convey the level of suffering that can exist despite so-called normal findings on examination. Feel free to copy and distribute. Sunshine, I hope this helps.

[willow26]

I've been using moisture chamber glasses that I started making in the 1980s.

I've been thinking about weather stripping and considering that to put in the gaps on dustbusters and whether that would help.

I would also add for symptoms on the list, the feeling of friction between eyelids and eyes. That's how it feels to me. Not that there is sand in my eye, but that the inside of my eyelid feels like sandpaper rubbing against sandpaper.

Or since not everyone fits into a box, a list of questions, is your sleep disrupted, are you employed/underemployed, etc, with a score at the end. As far as I'm concerned that is an "objective" measure, as long as it's standardized, right?

[Bill Sonoma County]

Thanks Willow,

Your feedback is what will make this work. Like you said, we have differing experiences.

So would "Friction" go under "Descriptors" for level 2? And does it fit with the Response and Long Term comments? Or should it be moved to level 3? Please suggest a wording.

Yeah, standardized is crucial. Don't know how to make it objective. It is still subjective.

Two other references to the use of questionnaires can be found by searching for:

The Association of Dry Eye Symptoms with Socioeconomic Factors and Quality of Life

and

Ocular Surface Disease Index© (OSDI©)

The questionnaire route sounds attractive, but I didn't find the above to be very applicable.