#34 THE ALLERGY DOCTOR

With my eye condition, I have found that it takes time to reflect and figure out what to do next. Like any journey, sometimes I will just camp out for a while and stay right where I am.

I know that moving forward at some point is still important. I want to stay hopeful about finding a place where my eyes aren’t at the forefront of my mind because of the discomfort.

In February, an outside doctor told me that my inflamed eyelids were a result of an allergy. From that point forward, he had little advice for me. For three months, I wondered what to do with that information other than stop all of my regimens.

When I was able to get the exact steroid drop from my regular doctor – the one that seemed to make a difference (Durezol), I was disappointed. My eyes didn’t feel wonderful like they did when I had used it three months earlier. Overall, they were still better, though.

I made a connection. Perhaps it wasn’t the steroid eye drop that helped. Instead, just stopping the regimen of eyelid wipes, artificial tears and compresses made the difference. Those very things were the irritants, and that was why I found relief.

I did ask my regular doctor for an appointment for allergy testing. I waited two months for an appointment. I contacted him to find out why it was taking so long and it turned out that he had simply ordered blood tests. The next day I had my blood drawn. He told me if I wanted to see an allergy specialist, it was a self-referral.

All of the results were normal. I was glad, but it gave me no answers. I called to make an appointment with an allergy doctor. There was a cancellation and I scheduled an appointment for the next day.

When I met the allergy doctor, he seemed kind and thoughtful. I told him my reasons for exploring an allergy were due to my irritated eyelids. I mentioned that I also had an outbreak of hives recently.

He prescribed an allergy eye drop (Olopatadine). It was safer than using a steroid drop. I had concerns, though, because I heard that it could dry my eye out even more.

Then this doctor ordered much more involved blood tests. He didn’t think scratch testing would yield as much information. He said he wanted to cover a lot of possible dust mite allergies. And he wanted to retest me for Sjogren’s, even though I was negative two years earlier. It seemed like my issues could be autoimmune.

Only a few days before, I ordered special pillowcases that were dust-mite proof. I decided I would get the mattress cover once the tests came back.

This new road I am following perhaps will lead me to some relief. I will share more once I get results.

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#31 LESS IS MORE

The relief that I felt after my appointment with a new eye specialist surprised me. I had low expectations and little hope. I had only made this appointment because my cousin pushed me. I had called her and cried when she asked me how my eyes were. She insisted her doctor could help me. My cousin’s eye doctor was far away and referred me to this new one.

Initially, I was a little anxious to use steroid eye drops that the new doctor gave me. In the past, one caused a bad reaction. Plus, an eye doctor I had seen a year earlier suspected that I had Glaucoma. I hoped I wasn’t doing anything risky since steroid drops could increase eye pressure. But I trusted this new doctor and planned to follow up having my pressures checked. The soonest appointment with my regular HMO eye specialist was in three months, unfortunately.

Until then, I was so thrilled that my eyes weren’t aggravating me throughout the day. I wanted to shout out with elation, “I am cured!!!” Unfortunately, it wasn’t like that. I was aware of them still, even though they were so much better overall.

I let the new doctor know that I had found improvement. Of the three steroid samples he gave me, only one really helped. It was called “Durezol.” The other two were Lotemax and Alrex.

He told me that Durezol was the strongest and that his suspicions were confirmed. I did indeed have an allergy. I asked him, “How do I know what I’m allergic to?” His response was that I was the best judge of that.

When the Durezol bottle ran out, I had a few bad days. I was discouraged but not hopeless anymore. I emailed the doctor to update him and to ask him for advice on what to do next, but he didn’t reply.

I longed for artificial tears but avoided them. I still continued to use Restasis but noticed that with the momentary relief of any eye drop (including Restasis), within a short time my eyes began to burn and hurt. The eyelid wipes that I had relied on were actually one of the worst irritants for my eyes.

Eventually, I called and reached the doctor a week later. I told him my suspicions – I was allergic to the wipes and all eye drops. I asked him what to use to wipe my eyes instead and he recommended baby shampoo. I tried his recommendation of Clariton, but wasn’t really sure if it made a difference or not. On days where my eyelids felt more inflamed, I took Clariton.

I began to learn that there was a difference between my dry eye pain and eyelid pain. The dry eye pain was something I felt every morning when I woke up. I had stopped using gel at night because I realized that the gel also affected my eyelids. Thankfully, with blinking my morning dry eye pain went away.

It was the eyelid pain that really drove me crazy. I felt sensations in my eyes, burning and heaviness – almost like I had stickers on my eyelashes.

I can tell that my eyes are feeling better because I am able to open them more.

This was definitely a twist for me after feeling hopeless. For over a year, I had given up on finding a doctor or remedy that would save me. But really, I was seeking answers and trying things again – so I had saved myself!

And this was definitely an example of “less is more,” a concept that fits into so many areas of my life.

It turns out that my friend Carol also realized the same thing about her regimen, which I shared on my last post. Her eyes were feeling better as a result of doing less. It was so ironic that we both reached the same conclusion around the same time. Sadly for Carol, the revelation of this came after being hospitalized. She had had a bad reaction to medication that was life threatening. How upsetting is was that trusting a doctor and medication could end up being risky instead of helpful.

The paleo diet I had adopted for three months hadn’t made a significant difference, but at least it hadn’t harmed me at all. Much of it was healthier. I eased back into a less restricted diet, but still avoided coffee and artificial sweeteners on a regular basis. So many of the remedies I had tried had hurt my eyes. Now it made sense. My eyelids were so sensitive and affected by every remedy I’d tried.

I had another one in my back pocket, though. I had ordered Optimel eye drops and they were coming from Australia. They were made from Manuka honey and I was willing to try them.

It was a great thing for me to have hope again!

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

#30 Judy and Carol

Just a handful of some of the supplements I was taking to help my dry eyes. Unfortunately, they didn’t do much for me.

I have shared many posts of my correspondence with Carol, a good friend I made through my on-line Dry Eye Support Group. 

Even though our common topic was our eyes and adjusting to discomfort, we supported each other through other things, too. Carol was anxious to hear how my appointment went with a new eye specialist last month. 

I didn’t expect much from my appointment. I wrote to her my impressions when I came home:

Hi Carol,

While I was waiting for the doctor I asked the assistant if he was a dry eye specialist. Turns out he was a general eye doctor. I had requested a dry eye specialist referral, so I was a little disappointed. Still, he was relatively inexpensive compared to the other outside doctors I’ve gone to. So if it didn’t work out, I was only out $150.

This doctor was kind and very nice. He said that I don’t have typical dry eye – but he said my eyelids were severely inflamed, however. None of my doctors have ever explained that. He said I didn’t have blocked glands, Blepharitis, conjunctival chalasis, incomplete blinking or demodex mites.

He prescribed some steroid drops for me to try. He gave me three different strengths and said to try one each week and slowly the dose would get weaker. After that, he wanted me to try taking Clariton – it seems he thinks it’s more of an allergy. He gave me all of the medication (the were samples), which was nice, too. I am hopeful that maybe this will help me! It sure feels great to have some hope again.

If this fixes it, I’ll wonder why I had to suffer for 3 years. But not really – I just want to feel better. He did tell me not to use artificial tears so much. I was using them every hour.

A few days later, I wrote again to share:

Good morning, Carol. I am elated to feel some improvement – I think the steroid drops are helping with my discomfort. It’s not normal/perfect or anything, but that slight difference is wonderful and I’m hoping it will continue to get better.

It’s ironic, but my other dry eye doc had given me some steroid drops that I never used because of a bad reaction I had to one in the past.

I feel like this time, the doctor seemed more aware of things and I was willing to trust him.

I do think I made my problem much worse by using so many artificial tears. It was a vicious cycle.

My friend was very happy for me and supportive. But not long after my appointment, Carol wrote to me that she was very sick and going to the hospital. Her problem was “low sodium levels.” She told me she would write later on and I anxiously awaited hearing from her. She lived across the country from me. I was her email buddy, but how would I know if she were okay? I was worried.

Finally, I received a message from her.

Hi Judy,

Back home yesterday afternoon but not feeling so great today. Curiously, eyes felt OK while I was in hospital and had only Restasis Monday morning early. Not even that Monday night as I didn’t get moved from ER to room until 10:30 pm so had none of my typical meds, compresses, lid wipes, etc. during the stay.  Didn’t even shower from early Monday until I got home yesterday afternoon as I had all the cardiac monitor wires attached plus IV catheter stuck in arm for whatever.  It makes me wonder if I overdo the eye drops, cleaning, compresses, etc. Even my vision is clearer. So I know what you mean about that, too.

Wow, Carol – you had so much going on. Do you know what was wrong? You didn’t say much at all about it and I imagine you probably hate even talking about it. When I took care of my mom, she had a few hospitalizations from “electrolyte imbalance.” I remember her sodium levels were low. I could tell something was wrong because she became very disoriented. It sounds awful.

It is interesting about being off the regimen and feeling better. I am not using any more artificial tears; they made my problem worse. It’s horrible to think that the very regimen we use to help ourselves could cause problems!

Hi, Judy,

It turns out that the medication the urologist put me on to help control so many urges to urinate at night can severely deplete sodium. When he prescribed it, I asks specifically about concerns using it and he said “it is given to kids to control bedwetting” indicating to me it is harmless. I looks it up online and I did see it can deplete sodium but I eat plenty of salt so thought no more of it. Apparently it doesn’t work quite like that.

When I felt terrible on Monday, and by late Monday afternoon I felt like I was dying. Apparently the dying feeling wasn’t far off. Sodium level is “critical” and can lead to seizures and death.  Still not quite to normal and I still don’t feel great. So fed up with taking one step forward and thinking I am better then made to go 5 steps back and feeling it is hopeless. Ok, that is enough.

Aren’t you sorry you asked lol??!!

© Judy Unger and http://dryeyediaries@wordpress.com 2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.