Miserable and Frustrated - Eye problems

[Nanerpus]

I’ve always had slightly dry eyes but this summer things took a turn for the worst. After lots and lots of testing, it was found out that I had allergies, which is fantastic as they were testing me for many autoimmune diseases, etc.

I’ve been living for almost 6 months with terrible ocular allergies - bright red, bloodshot appearance, stingy, itchy, light sensitive. I know it doesn’t seem like a big deal, and trust me I’ve had much more serious ailments (septic hip as a baby, pancreatitis) - but this has become disabling. I don’t ride much, I have cancelled my weekly lessons with my dressage trainer. It sucks.

Everyday I wake up hoping for a “good day”. I instill preservative free artificial tears several times an hour, wear goggles when I am at the barn and riding, take Allegra, have tried Restasis (which was not for me), and now am on a low-dose steroid drop daily for a while to get the inflammation down, in addition to Pataday eye drops for allergies. I am still miserable. I can’t make plans because I never know when I’ll have an allergy attack and be down and out for the day.

I have completely redone my bedroom to remove all allergen sources, have mite proof covers, dust/clean like crazy every day, use air purifiers, am on herbal allergy support, have cut out all food allergies as well, sinus cleanse and shower as soon as I’m back from doing stalls, and I still have attacks.

The problem is that I have dry eyes AND allergies, and the treatments seem to work against one another. The antihistamine pill and drops dry you out, exacerbating the dry eye, while a humidifier to help the dry out produces mold, one of my allergies.

I’m sorry to complain and in no way want to trivialize more serious problems. But I’m so sad at this point. I can’t make plans with my friends, or go out with my husband, and thinking about showing, or even riding next summer, has me depressed.

Edited to add, I’m 26 years old and never had allergies before, or so I thought. I tested allergic to molds, house dust, dust mites, trees, ragweed, and horses in large quantities.

[whicker]

It can get better

If those are your allergies, they can respond to allergy shots. Your allergist should have given you a list of things you can do to improve your environment. I’m allergic to most of the things you are. It has taken allergy shots, taking out the carpets, putting in hardwood/laminate/tile/cork flooring, en- casing the bedding, buying a major horse vacuum and other joys. It has taken a few years to afford it all, but i’m able to do what I want, including foxhunting. I do still avoid indoor arenas and other mold and mildew likely places. I also can tell at a distances if the hay dealer is attempting to put moldy bales in my barn.:winkgrin:
If you aren’t dealing with the allergies, you may not have the dry eye problem, either…

[Nanerpus]

[QUOTE=whicker;5372389]
If those are your allergies, they can respond to allergy shots. Your allergist should have given you a list of things you can do to improve your environment. I’m allergic to most of the things you are. It has taken allergy shots, taking out the carpets, putting in hardwood/laminate/tile/cork flooring, en- casing the bedding, buying a major horse vacuum and other joys. It has taken a few years to afford it all, but i’m able to do what I want, including foxhunting. I do still avoid indoor arenas and other mold and mildew likely places. I also can tell at a distances if the hay dealer is attempting to put moldy bales in my barn.:winkgrin:
If you aren’t dealing with the allergies, you may not have the dry eye problem, either…[/QUOTE]

Whicker, thanks for your reply. My allergist also said that allergies can cause dry eyes so I’m thinking it could be that. I’ve always had the "allergic look - shiners below my eyes, etc.) for years, but never had eye problems this summer. But now it’s the dead of winter and I am still miserable!

I have done all the recommended allergy elimination methods as the allergist gave me - all anti-allergy lined bed linens, took all the carpets out, cleaned all the wood floors, put in an air purifier by my bed, and several more throughout the house, dust with damp rags, sinus cleanse several times a day, we have a horse vac, and I wear ski goggles when I clean the barn or ride, and I’m still having attacks. This is also on the Allegra prescribed by the allergist. He wanted me to take it for 2 months and then go see him, so allergy shots will probably be spoken about when I follow up with him.

[LauraKY]

Allergy shots, Zyrtec, Singulair? What are you allergic to? I assume he did allergy testing.

[whicker]

The hunt is on

I also switched to a HEPA air filter on the house vacuum. Then I weedled others into using it when I was out of the house.:winkgrin:

Have you checked for mold/mildew in your walls, ceilings or basement? We had to add a whole house serious HEPA filter system and a de- humidifier. We had mold in places that surprised us. Got to be good friends with our neighborhood plumber. The most unsettling experience was having the toilet start to go through the floor to the basement!:eek: Another clue was the collection of little ants that would appear in the bathrooms. They like moisture, Bless their little collective hearts…

There are allergy products that can create barriers and ones that can be put in the wash, so you don’t have to use the super hot water and fade your fabrics. Borax has many uses. (does wonders on the ants and other creepy crawlies)

What kind of pillows are you using? We had to switch to new ones that are hypo-allergenic. ended up with tempur-pedic with several barrier layers of encasements.

I discovered that upholstered furniture collects the allergens, even when I vacuumed. I ended up switching to leather, after the old pieces collapsed. Check out Ekornes brand from Sweden. It isn’t as expensive as most and is ergonomically constructed with lumbar support. It comes in many beautiful colors. It was recommended by my P.T. It is also much easier to take care of.

Feel free to P.M. me for more ideas and encouragement. The important thing to remember is that there is hope. You can feel better.

[system]

I am really sorry to hear that Nanerpus I have chronic rhinitis and my IQAir health pro plus helped some. In my research I did discover that there are other household contaminants that might cause problems. This article outlines it well:

http://www.airpurifierguide.org/health/the-top-ten-sources-of-indoor-air-pollution-in-the-home (Top 10 sources of indoor air pollution)

I definitely second the ideas of switching to leather furniture, removing carpets, and washing eyes and hands frequently. If you can isolate the exact allergens, that will help too (although allergy tests can sometimes be wrong). Agree with a whole house air purifier although I don’t think they can use true HEPA filters in them, something about restricting air flow.

I can see how this whole process could be really frustrating, allergies suck!

[system]

Also I wanted to add that I have known people with severe allergies and the only thing that helped get them under control was allergy shots. These also take time to work since they need time to build up your immune/allergy response system.

[Come_Shine]

I have Sjogren’s syndrome, in addition to allergies. Sjogren’s (basically my eyes don’t make tears properly) was diagnosed about a year ago after YEARS of struggling with dry eyes.

What helps me is using Refresh Lacri-lube at night. Also putting a warm, wet compress on my eyes for 15 minutes.

I find using Benedryl is the most helpful for me. Doesn’t seem to make my eyes dry out as much as other allergy remedies.

Good luck. It certainly is a miserable and frustrating problem.

[stryder]

I’m so sorry. What a frustrating situation for you!

My DH has allergies, although not as severe as yours. What’s helped for him is installing a whole-house vacuum. Before we took that plunge, we used a shop-vac with a long, long hose. Put the shop-vac outside so it vented outside. Believe it or not, that was a fairly marked improvement from the expensive vacuum with the whazoo filter.

[walkers]

Dry eyes as extreme as yours can indicate other medical problems besides allergies. You may want to investigate further.

[Nanerpus]

[QUOTE=walkers;5658800]
Dry eyes as extreme as yours can indicate other medical problems besides allergies. You may want to investigate further.[/QUOTE]

I agree and understand.
I’ll tell you what I have been doing and maybe you have some other ideas… I’ve spent over a year now trying to figure this out with a LOT of different approaches. I’m MUCH better now, actually now that the weather is warm (although itchy from allergies), and just on an allergy drop and some preservative free tears. To rule out underlying problems, though, I have seen:

The top 2 Opthalmologists in our area - dilation tests, thorough pressure/eye exams, staining, followups for over 2 years, dry eye tests - and apparently, I’m a 2 on a scale of 10 for dry eye - just wayyy sensitive. Both eye docs have found a healthy eye (sight is great), and only “superficial/cosmetic” redness and no deep inflammation at any time. My pressure has always been fine. I do have a “callous” in both eyes that gets more inflammed causing a lot of the problems, but it is benign and very common and not a cause for concern.
Full blood panels have been run from the Opthalmologists to rule out underlying disease.

Other places I’ve been:
A Rheumatologist (Head of Brigham and Women’s - he did ALL sorts of physical and blood tests/panels plus a complete history since autoimmune does run in our fam)
-Dermatologist to rule out Rosacea/Ocular Rosacea
-Allergist
-Nutrionist, Herbalist
-Naturopath (Hormonal panel, food sensitivities panels, Vit D)
-Acupunturist
-Bio-Feedback

• Massage Therapist

All of these have been now many visits for each, whether it be a treatment, a plan, tests, etc. All have been clean. I had 1 weakly speckled positive ANA test that a month later was negative and it was thought to be a passing virus - the rheumatologist did not see anything he was concerned about.

I do have Raynaud’s, but it is believed to be primary since I’ve had it from age five, it runs in my family, and he did some oil/nail test with special microscope and found no abnormal capillaries.

I’m still getting extremely itchy eyes, redness, and some stinging sometimes but other times/days I’m feeling fantastic etc. It’s always the worst at the end of the day. I do need to put in PF tears throughout the day, though :-/

Any other avenues you think I need to explore?

[rcloisonne]

[QUOTE=Nanerpus;5659191]
Any other avenues you think I need to explore?[/QUOTE]
Given your family history of autoimmune issues, the severity of your eye problem, the lack of response to allergy treatment AND your age, I suggest you continue to persue this through a rheumatologist.

One of the best places in the world for the diagnosis and treatment of autoimmune diseases is the Rheumalology Clinic at Boston University Medical Center. Several excellent rheumatologists there.

http://bmc.org/rheumatology.htm

[Come_Shine]

[QUOTE=Nanerpus;5659191]
Any other avenues you think I need to explore?[/QUOTE]

Get tested for Sjogren’s.

[DressageAppy]

If autoimmune is a possibility I would say get your rhumatolagist to test RF, SS-a and SS-b and if any or all of them come back positive I would say have a look at Sjogren’s. But you may have already had these tests and ruled it out if you have seen a rhumitoligist. Raynaud’s is also associated with Sjogren’s. Have you tried an immunologist?

My eyes get irritated very easily and often feel like “alergy eyes” until my Dr told me it’s because they are dry. I hope you find some answers soon! I had to wait 12 years for my diagnosis, let’s hope you find a solution a bit quicker than that! Good luck

[Nanerpus]

Hi, yes I’ve gone through 3 rounds of all the auto-immune markers, nothing ever was positive except 1 time (first time), a weakly speckled barely positive ANA, which was negative when again tested later.

My opthamologist was the one who first ran a set of things, anti ss, ro, sed rate, c reactive protein, on and on and on, full blood panels, lupus, sgogrens, RA markers. Blood and Urine.

Then on to the Rheumatologist, like I said I feel pretty confident with him, he’s the head of Brigham and Women’s Rheumatology Dept in Boston and recommened by my orthopaedic surgeon (old injury) at Boston Children’s Hospital, he actually got me in with him.

This doctor did another extensive set of tests even though he felt strongly after a physical exam (checking my saliva, oil/microscope on my nails, and other tests) and with my family history, that nothing was going on at this time. And then when the tests all came out negative, he called me and let me know. He feels strongly in the laboratory dept of B & W’s, and says their autoimmune/immunology lab is especially good at what they do.

While I understand that I should be on the lookout for this stuff, I had an entire year where my mind went into a whirlwind full blown hypochrondriac state. I’ve spent thousands on all different specialists, and was cleared by them all as far as testing and stuff goes. I know that doesn’t mean I don’t have something going on, but at this time all is good aside from still dealing with some dryness and some itchyness, and I am still trying to recover from all the doctor visits, testing, waiting and stressing. It’s been a lot of worrying. I’m taking a break from it for now, as a lot has changed since my original post in terms of my comfort and the severity of what was going on, not to mention again, more specialists, more tests, etc that I went to and things turned out unremarkable.

[DressageAppy]

It sounds like you have taken all the steps you can at the moment, and at least you have ruled out a lot of things but don’t stress about having a diagnosis. As long as you are managing your symptoms the diagnosis can come later with new and better tests, a new approach or just plain old luck!

It is frustrating when you know something is wrong but all the tests come back normal I spent 3 years having test after test with nothing coming back positive and gave up for many years in doctors trying to manage my symptoms myself with some success when I finally went back to a doctor (7-8 years later) I found a very determined lady who could look at things a little differently so that with a few new symptoms and that’s when I got my diagnosis and to tell you the truth it hasn’t helped that much yet haha but I still hope to find the right balance of medications/drops/rest/riding

It’s a good idea to take a break from all the doctors for a while especially if you are managing your symptoms they will always be there if things change again.

[Nanerpus]

[QUOTE=DressageAppy;5662082]
It sounds like you have taken all the steps you can at the moment, and at least you have ruled out a lot of things but don’t stress about having a diagnosis. As long as you are managing your symptoms the diagnosis can come later with new and better tests, a new approach or just plain old luck!

It is frustrating when you know something is wrong but all the tests come back normal I spent 3 years having test after test with nothing coming back positive and gave up for many years in doctors trying to manage my symptoms myself with some success when I finally went back to a doctor (7-8 years later) I found a very determined lady who could look at things a little differently so that with a few new symptoms and that’s when I got my diagnosis and to tell you the truth it hasn’t helped that much yet haha but I still hope to find the right balance of medications/drops/rest/riding

It’s a good idea to take a break from all the doctors for a while especially if you are managing your symptoms they will always be there if things change again.[/QUOTE]

You definitely hit the nail on the head. I realize things can come later, including a diagnosis, but I’ve been there as far as making myself crazy with worry about what it COULD be, or this or that, only to see doctor after doctor tell me I have allergies, I’m sensitive, I have minimal dry eye, etc etc. So, yes, like you mentioned, I’m effectively managing my symptoms with my new eye doc (she’s great) and I’m taking a break from the rest of the doctor visits having been sent home with a “clean bill of health” for the time being…

… I’m not going to get myself into a state of stress and fear and panic again. Right now, I’m enjoying myself, getting ready to possibly start a family with a very supportive, wonderful husband. Most days I actually feel great, now that the weather is normal, and I forget I even have issues. The original post was morefrom this winter when it was colder and my eyes felt really bad sometimes.

Thanks for your support - It’s nice to know someone else understands how frustrating eye stuff can be, although of course I hope you are feeling good