Seeing makes me sick. Still.

[chloebear]

I am desperate and have seen many professionals, and I don't know where to go from here. I am near-sighted. I started wearing glasses in 4th grade, and contacts in 6th grade. I wore contacts for 10 years before these struggles began. I'm now 23 and just want to see, period.

I apologize for the length of my post. My situation can not be summed up accurately in just a sentence or two. I would really appreciate some feedback.

Two years ago, I was diagnosed with conjunctivitis and prescribed antibiotics by my primary care physician. It returned a couple weeks later and so I used the antibiotic drops again and was referred to an eye doctor at a different practice from where I usually go. He said the infection was gone and all that was left was inflammation, so I did a round of steroids. I continued to have redness and itching, so I saw my regular eye doctor. Actually, I probably saw him around 13 times. We started out trying lubricating eye drops and allergy eye drops, and I tried several different types of contact lenses (15ish?). My problems escalated as allergy season hit. I have very bad allergies and developed hives under my upper eyelids. The hives were sooo itchy and my eyes swelled a LOT. I started allergen immunotherapy and, in addition to my Allegra and Singulair, began taking Vistaril, which helped significantly with the hives. A year later I was still having trouble with contacts and so my eye doctor encouraged me to give them up and wear glasses full-time. I was reluctant to do so because I knew my glasses gave me headaches, but I did it anyways and hoped that they would subside within a few weeks once I "got used to them."

Not the case.
It has been another entire year since I gave up my contacts. A year of wearing my glasses, visiting my eye doctor many more times, checking and rechecking my glasses prescription, adding and removing correction for astigmatism, trying a new prescription for reading glasses, punctal plugs, and various eye drops. I have been through 15 eye drops now. I currently use Restasis, Genteal Moderate-Severe, Refresh Optive Advanced (when I'm trying to wear contacts especially), Pataday for itching, and Alrex or Lotemax for hives. I was also referred to a "specialist." She said my tear production has increased since I started the Restasis, but I don't actually FEEL any difference. I've also had my thyroid tested. On the first test, it came back just a little low and on the second one it was normal. A third test also confirmed it was normal. Sigh.

I could probably stand the dry eyes if my glasses didn't cause me such agony. Over the course of the past year, the headaches did not subside. My eyes throb, I feel a little light-headed and nauseous. The best way to describe it is like being car sick ALL THE TIME. The nausea has progressed in severity. A couple months ago I began vomiting when wearing my glasses. New all-time low. I received testing for equilibrium issues but all tests came back normal.

Since the vomiting incident, I have been wearing contacts. No matter how uncomfortable they are, nothing is as bad as constant nausea and vomiting. For the longest time, only my glasses caused me to have headaches and nausea. However, more recently I have begun experiencing headaches with contacts also. The back of my eyes throb and I sometimes get this feeling "I just HAVE to take these out, I can't even STAND it." Yesterday I had a dull headache all day and my eyes were throbbing. I took my contacts out and took a nap; awoke feeling a bit better. I put the contacts back in and my symptoms returned and intensified. I became nauseous, but I was also hungry because it was dinner time (hungry + nauseous = worst combo ever). I tried to eat a saltine cracker, but I couldn't SWALLOW...?!?! I gagged on it and thought I was going to throw up. I took the contacts out and took a nap. I awoke feeling totally find and ate dinner. I spent the rest of the day navigating my house "blindly." It is very hard to function without clear vision.

I was evaluated for LASIK and deemed a candidate, but am very hesitant to pursue surgery. I fear the dryness and/or nausea may become worse and permanent. I've seen my PCP, 2 optometrists, 2 opthalmologists, and a LASIK specialist. I don't even know where to go from here. The way I see it, if the dry eye issues could be resolved, I could wear contacts comfortably and without problems. Or, if the glasses issues were resolved I would be okay with wearing them even if my eyes are still dry just as long as I'm not nauseous. These resolutions seem so unattainable. I know this is somehow related to my eyes. I feel much better if I don't wear contacts or glasses. Unfortunately, it really inhibits my ability to navigate my home, read, finish homework, etc.

So, I guess what I'm wondering is... does anyone have any recommendation on where to go from here? I started researching neuro-opthalmology... Does anyone know anything about that? Is that even an appropriate direction to go? I'm trying to make it through grad school and am really struggling. I have so many papers to type, but staring at a computer screen makes me feel so crappy. Feeling pretty desperate here. Sorry for the extensive length of my post. :\

[Rebecca Petris]

What is your glasses prescription?

What is your contact lens prescription?

What is the longest you have ever gone wearing NEITHER glasses or contacts? Have you ever have any nausea/other symptoms during that time?

[Rebecca Petris]

p.s. I'm going to see if I can get some feedback from some doctors with good troubleshooting skills on this. I'm sure I'll have more questions. Meantime... jimminy crickets don't give any thought whatsoever to getting LASIK or any other elective surgery. It's not even really all THAT great at doing what it's supposed to do let alone solving unidentified problems. We'd hate to see you leaping out of the frying pan into the proverbial fire! Hang in there - somewhere there IS an answer to what's going on and why.

One further thought regarding coping with this in the short term since it seems to be escalating and you clearly need some solutions on the practical side while tracking down better diagnosis: I would strongly recommend you start tapping into low vision resources (software, low vision organizations with devices & whatnot that can help).

[Rebecca Petris]

p.p.s. Did you ever check out the eye muscle angle? The best person to see for this would probably be a good pediatric ophthalmologist.

[chloebear]

Thank you for your response and help, Rebecca. I really appreciate it.

My prescription has been changed so many times over the last year, trying to get it "right."
Glasses: R -4.75 and L -4.00; however this has recently been changed to a lesser prescription but I'm not sure exactly what it is.
Contacts: I'll have to check when I get home, but I think have recently been changed to a lower strength- R -3.50 and L -4.00 BUT I'm not positive on that as they have changed sooo many times. I'll check when I get home. In the meantime...

Following the initial vomiting incident I didn't wear my glasses ever again. I started wearing contacts about a day and a half after the vomiting episode. The nausea improved after discontinuing the glasses but took about 3 days to disappear completely following the episode. I feel significantly better when I don't wear either glasses or contacts. Generally I have not experienced headaches or nausea with my contacts until just recently. I'm trying some trial contacts in a lower prescription than what I normally wear and have noticed more headaches since then. However, going without contacts or glasses feels the best... It's just hard to function. I know my prescription isn't "that" bad compared to many other people, but it's bad enough that it makes it difficult to function without corrective lenses.

I haven't looked into eye muscles yet. I know one of my optometrists offered that as a possibility, among many others and I have had a hard time choosing which angle to consider. Perhaps I'll look into that- I believe my optometrist had someone he'd like to refer me to. Thanks for the suggestion!

I'm not seriously considering LASIK right now. Even though I was deemed a candidate, something about it just doesn't seem right. I have a bad feeling about it.

I met with my field education professor to discuss my situation and she suggested looking into disability services, especially for audio books or large print text. I just feel like I'm not "sick enough" to use disability services, like who am I to complain about dry eyes when other students are legally blind or confined to a wheelchair?

[Rebecca Petris]

I met with my field education professor to discuss my situation and she suggested looking into disability services, especially for audio books or large print text. I just feel like I'm not "sick enough" to use disability services, like who am I to complain about dry eyes when other students are legally blind or confined to a wheelchair?

I would look at that a little differently. Eyes are pretty basic - no matter what's going wrong with them it's a big deal, it really is, and I know plenty of people who truly are disabled by dry eye. But given your specifics I would be thinking of it more as a vision issue, i.e. if corrective eyewear means you're nauseous or vomiting all the time (meaning, non functional), but you can't see without corrective eyewear (given that your Rx is -5 or thereabouts), you basically ARE legally blind, just for different reasons.

[chloebear]

Thanks. Makes me feel a little better. I look forward to hearing what you find out from other doctors. I appreciate your input!

[Guest]

Best of luck to you Chloebear. And I echo what Rebecca has said about LASIK... if your eyes are already dry, they could get sooooo much worse from LASIK - don't underestimate how disabling dry eye can be if severe enough (I know... that sounds so melodramatic... but it's true... heck, if your eyes hurt too much to keep them open due to severe dryness, it can be pretty bad... I know, since I've been there.)

[littlemermaid]

Student Support may know what software dyslexic students are using eg Dragon - you dictate, it types - and eg reads out text on the screen (Google 'text to speech software')
http://windows.microsoft.com/../Hear-text-read-aloud-with-Narrator

I know some of this software is annoying eg computer voices but if you hook up with the partially-sighted students services they can feed you into better, more current temporary solutions. Anything that helps would be good.

Do you have headaches or eg tingling in the limbs with the vision problems? Do you still think it's purely a convergence problem, or do you have other random headaches? Have you had visual fields checked? Have you had a head and optic nerve scan?

[chloebear]

Thank you. I will look into that.

I don't have tingling. I generally do not have other random headaches, only occasionally if I haven't had enough water to drink. I think I have had my visual fields checked... after so many different tests and doctors, I have a hard time keeping straight what all I have done. I had an MRI done of my brain and everything was normal. I guess that's good because it means I don't have cancer or a tumor... but I still don't have an answer or resolution. I have another appointment with an optometrist on Thursday for a contact fitting, but I just have such a hard time justifying ordering and paying for these contacts because I HATE wearing them. I guess I can only use trials for so long, but I don't really want to buy these contacts. They're uncomfortable, but I'm out of options.

[littlemermaid]

Those contacts aren't going to do your dry eyes much good, are they?

I thought they were going to try prisms in your spectacle lenses? It must be very difficult to get that right so could you be seen in an eye hospital rather than high street optometrist?

Have you been checked for diabetes? One problem we've had is trailing round random docs being referred on for random tests without anyone really taking charge. This is why I'm wondering if you'd get better attention on diagnosis in a specialist hospital eye service, if you haven't already got it and can find it.

Our General Practitioner service has been truly awful on diagnosing, referring and coordinating the systemic problems.

Same. We have a hard time keeping straight where we've been and what test results we've got. I've made a file with all doc letters, all test results, and a summary sheet. Anything missing, I phone or email and demand it. Saves a huge amount of time on giving history to new juniors, and provides the quick overview the consultants want. Also looks like a bit of a catalogue of disaster and makes 'em think a bit about their diagnosis protocols. Keeps my head straight and also helps us to distance ourselves emotionally from the problem - we start to look more like 'somebody else's case' and I start Googling the symptoms more effectively. Some say this shows lack of trust in the docs, lol, but I think it helps docs get an overview of what's happening so they can think about differential diagnosis.

[chloebear]

Yes, the last optometrist suggested trying prisms but then I moved on to a different optometrist. I guess that is something to still consider, though I didn't notice much of a difference while trying them in the office. I recently switched from polycarbonate to Trivex (I think?) but still continue to get headaches. I don't enjoy wearing my glasses either.

I was starting to look into neuro-opthalmology and found there are not many in my area, but the University of Michigan hospital has the Kellogg Eye Center that might be worth looking into. It would be a bit of a drive. I'm just afraid of getting there and being told they don't treat my condition or something.

I like the file idea. Gee, why in the world wouldn't you trust the docs?

[littlemermaid]

Gee, why in the world wouldn't you trust the docs?

Ahaha, love docs. We're having a good day.

Maybe email optometry department of Univ of Michigan Kellog Eye Center or chosen eye hospital with some summary notes, esp the optometry numbers, and ask for advice what they think you should do? It's amazing how helpful these people can be. We've waited a few months for a reply from a national eye hospital cornea service, but reply they did. Any chance it's a bit of keratoconus - have you had corneal topography?

[chloebear]

Hmm, I am pretty sure I have had corneal topography. I believe that was done when I was evaluated for LASIK (which I don't intend to pursue). I would assume they would have mentioned it if they suspected it. But with my history of severe allergies, astigmatism, and nearsightedness, I do have some things in common with keratoconus.

I had another appointment with an optometrist this week. She gave me two different sets of disposable contacts to try with 2 different prescriptions. I'm not feeling super hopeful; I feel like this is as good as it gets. I'm just holding out hope that some day I will be able to get off my antihistamines and maybe that will help reduce the dryness. That will probably not be for quite a while though. In the meantime, I have 132 days until grad school is done...

[littlemermaid]

So you are using oral antihistamines to control allergies? Do you know what you are allergic to?