The Eyes Have It

I know it’s inappropriate to refer to mentally ill folks as “crazy.”

That being said? News flash to my doctor: I know that I’m crazy.

But just because I have a history of mental illness, it does not mean that you can just dismiss my documented physical symptoms and insist that I “just need psychiatric medication.”

Psychiatric medication makes my eyes more painful, because they dry them out. This has been explained to you.

Also, if a “normal” person presented with these symptoms, would they be treated the same way? I sure hope not. I feel that I am being discriminated against because of my mental illness. I have been suffering physically for months. This is unacceptable.

When I first developed photophobia, and what was later diagnosed by the ophthalmologist as dry eye disease, my primary doctor noticed that I seemed quite anxious. She suggested that I needed psychiatric medication. The funny thing was, I had been taken off all of my psych meds because of the eye problem. And psychiatric meds would have made things worse.

The even funnier thing was, I was anxious because I COULDN’T SEE. I think that would make most people anxious. And my condition seemed to be deteriorating.

Since then, I have been diagnosed with uveitis. The underlying cause is undetermined. I had a lot of blood tests. They don’t show markers for inflammation, yet. But my eyes will not calm down. The burning abated when I was on topical steroid drops four times a day. Now the burning is back with a vengeance. I am on other prescription eye drops to help “calm my immune system down.”

I have been complaining of episodes of extreme fatigue since I was diagnosed with shingles. That was sixteen months ago. I remember being fatigued even before that, but I assumed it was stress. The fatigue is a bone tired exhaustion. It’s unlike anything I’ve ever felt before. Now I’m so fatigued that I can’t function well on a day-to-day basis. Added to that, I am having dizzy spells where I don’t feel comfortable even driving five minutes to the local grocery store.

I have been depressed many times. I have never been this physically ill.

I know that my blood tests don’t show inflammation yet. The fact of the matter is, my eyes have been inflamed for months now. The eye doctor still thinks it’s an immune system issue. So some sort of treatment would be helpful. I’m dumping prescription eye drops and $40 worth of OTC eye drops into my eyes per week just to keep the pain at bay. This would indicate that there is something physically wrong.

I haven’t been able to work in months. Because of my eyes being the way they are, normal lighting conditions are painful. Even applying for jobs has proved frustrating. There is fluorescent lighting everywhere, and “turn off all the lights in the company/store” would likely not be considered a reasonable accommodation.

I tried applying for an at-home transcription job. Even with the brightness turned down, I could not read the instructions. I have since discovered a dark browser, which has been helpful.

But the truth is, I am running out of money and I don’t know what to do.

My doctor doesn’t seem to care. At least not enough to try something. Do I want steroids during a pandemic? Nope. Am I willing to try anything at this point if it would help me feel better? Yup. Do I want an autoimmune condition? Absolutely not. Do I need help, physically? Yes. Yes, I do.

Instead, I get scoffed at and treated like I’m unbalanced and utterly unintelligent. It’s infuriating.

I wrote to my medication manager, who I saw six days ago. She seemed to think I need some sort of physical treatment at this point. If the med manager and my counselor don’t think it’s all in my head, and they acknowledge that I have physical symptoms, why won’t the doctor take me seriously?

I insisted on the phone call to my primary doctor that I was stable. But I admit that talking about the way I feel physically, I was almost crying. I am upset at being exhausted and in pain. I have every right to be. It does NOT mean I am unbalanced or delusional.

They can’t see inflammation in my blood. But the eyes have it.

No More Tears

I’m going to have to do this quickly. Being on the computer hurts. Luckily, I dictated most of it for the THIRD ophthalmologist’s benefit. Thank you to Ozzy Osbourne and Lita Ford for the assist on the title and subtitles. You guys rock.

Here is the timeline of my lovely neurological symptoms.

March 31st– I received my first COVID shot. I was overjoyed, as an asthma sufferer and a (technically) obese person. That’s two strikes. My son also felt safer, as an added bonus.

April 7th-started a new mood stabilizer, 20 milligrams. On April 13th, my provider increased the dose to 40 milligrams

April 20th-My vision problems began. I noticed excessive blinking in the car. Then my vison was blurred and I could only focus with one eye or the other, especially when watching TV or looking at a screen.

April 21st-I received my 2nd COVID shot. Huzzah.

April 23rd-started 1 milligram of brand-spanking-new controlled substance.

April 25th-My provider, concerned about the vision side effects, had me cut back to 20 milligrams of the mood stabilizer.

April 26th– I discontinued the mood stabilizer.

April 27th-put back on 50 milligrams of my old OCD med and 2.5 milligrams of my trusty old antipsychotic nightly.

I noted other symptoms, such as fatigue, sometimes extreme. I also started twitching while trying to focus in light, and I would also twitch for an hour or two at night before I went to bed.

I was told the new mood stabilzer should have cleared my system, and that I should follow up with the doctor. I started drooling and twitching to an extreme on May 1st. I got out of the shower, and a whole stream of drool escaped from the left side of my mouth. I thought, “Well, that’s not good.” But I have a history of overreacting to symptoms. So I held off on medical care. My vision was increasingly blurred. I confided in my friends, and they suggested I go to the ER.

May 3rd-I called St. Luke’s urgent care when I did not receive a response from my regular doctor’s office. They told me to go to the emergency department because of the blurred vision and drooling.

The hospital experience was interesting. They didn’t tell me what they were looking for. They just wanted to run a lot of expensive tests on me without telling me why. When pressed, a nurse told me that the tests were due to the “emergent situation.” The MRI and blood test appeared normal, except for white lesions on the brain. They speculated that these were from concussions an migraines. I had migraines in childhood, and migraines when my prescriptions needed an update, but other than that, I don’t have an extensive history with them.

Trussed up like a turkey from all the wires, they told me to call if I needed anything. Then they put the call button far out of reach. I complained of my extreme light sensitivity at the beginning of the ER visit. At the conclusion, after three hours of stress and confusion, the doctor asked if my headache was better.

Wow. Color me unimpressed. I’m glad you eliminated anything life-threatening. But after you administered no treatment as I twitched under three relentless hours under fluorescent lighting, you had the audacity to ask that question? I was offered migraine medication. If it was a migraine, I would have figured that out on my own. I’m glad I wasn’t having a stroke, which was what they didn’t tell me they were looking for. But come on, people.

May 4th-I followed up with regular doctor. She was kind enough to turn down the lights. She then told me to “Take a chill pill” and go lie in a dark bath. I did not find her comments helpful, and she wanted to discontinue my psychiatric medications. My medication manager later agreed. But I had gone off all psychiatric medications a month prior, and it was a nightmare. So I objected to this course of treatment, but after a few days I stopped my medications because nothing else was helping. My regular doctor also suggested that I discontinue all antihistamines that I use to control my severe seasonal allergies.

I followed up with ophthalmologist a few days later. The first ophthalmologist prescribed steroid eye drops in the hopes that if there was any inflammation, it would solve the issue. My photophobia got much worse. I was seeing auras around every light. I was seen in the ophthalmologist’s office again a week later, and was referred to a local neuro-ophthalmologist.

Meanwhile, I called the ophthalmologist’s office to ask what to do about the severe pain in my eyeballs. I was told to go to the ER for unbearable pain. I was asked if I was wearing sunglasses, even inside the house. No, I’m sitting here like Malcolm McDowell in A Clockwork Orange. Of course I was wearing my sunglasses inside! I couldn’t function otherwise.

Crazy Train

Almost two weeks passed, and I kept calling the specialist’s office to see if my referral was approved. It was ultimately declined, because he does not treat photophobia.

Yes, I cried like a lunatic. I was unable to see normally and no one could tell me why. And all of the doctors I saw were refusing to try anything.

In the meantime, I changed providers to a primary care doctor at St. Luke’s. I also consulted with the medication manager, who at the time had no idea what could be causing this. She eventually suggested it might be conversion disorder, where a patient develops legitimate neurological symptoms stemming from a psychiatric disorder. It was not very encouraging.

My third and final ophthalmologist visit, I was finally diagnosed with dry eye syndrome. Apparently, a switch in my brain that tells my eyes when to lubricate is malfunctioning, perhaps as a result of that bad-for-me psychiatric medication. They didn’t tell me an official diagnosis at the time. No, I had to call back and clarify with the assistant. The doctor gave me punctual plugs. He didn’t explain that these were medical devices put into my tear ducts until after he approached me with a tool aimed at my eyeball. Yikes. He also prescribed rose-tinted glasses. “Lifetime Cynic Prescribed Rose-Colored Glasses.” I can see the headlines now. Actually it’s a more specific tint called Fl 41. It’s supposed to block specific wavelengths of light that are bothering me. Mostly sunlight, fluorescents, and screens.

And the kicker is, I will have to wear these new glasses ($535 for one pair), from the moment I get up until the moment I go to sleep.

Let me say this for the medical “professionals” in the back. When someone is losing their vision, it is NOT OK TO PATRONIZE THEM AND TELL THEM THAT THEY NEED TO GO BACK ON THEIR MEDS. Starting to lose a major sense, such as your vision, is terrifying FOR ANYONE. Additionally, going back on my medications would have only made the eye condition worse, according to my medication manager. Our options for effectively treating the mental illnesses, sadly, are now greatly limited.

If I Close My Eyes Forever

…will this headache go away???

My symptoms fluctuated from day to day. I always had to wear sunglasses no matter what. Sometimes, I had a searing pain in both eyes. I started taking ibuprofen when this happens and it seems to help. Sometimes, I just had to put a sleep mask on and wait for an hour or two until the pain went away. Eye vitamins and magnesium have also helped a bit. My boyfriend bought a whole-house humidifier, which I am grateful for. It’s no fun having dry eye syndrome in an extremely dry climate.

I called the ophthalmologist back again and was told to add fish oil to my supplements. And I was informed that regular eyedrops have preservatives. That’s why they sting after a while. Nightly warm compresses will also help. All of this would have been good to know from the get-go. It’s not like I could see to research it much on the internet.

I have had these new, FL 41 tinted glasses for just over a week. My vision is still hit and miss, especially on the computer. I still suffer from frequent headaches. I have to take eyedrops with me wherever I go, and stop along the way to put them in if I’m driving. I can now drive for short distances, though. It’s exhilarating.

I worry about whether this will improve further. It took two weeks to get this blog entry finished. I’m going to give it another week, and then call the ophthalmologist’s office AGAIN if I see no improvement. I need to go back to work. My planned appointments with vocational rehabilitation were cancelled as a result of this condition. To reapply, I am going to have to start the months-long process all over again.

My eyes have had it. Sorry if there are typos. Until next time…

The Twitching Hour

I tried to dictate this blog without looking at it. Because I twitch and drool every time I look at any sort of light. Talk to text doesn’t work well. So here goes nothing.

The trouble, as I remember it, began on April 20. I was having light sensitivity while driving to a clinic appointment. I had recently started a new psychiatric medication. Three days later, I started another.The light sensitivity only got worse, even though I stopped the medication they thought was causing the problem.

Since then, I have returned to my trusted medications. The ones I’ve never had a problem with before. My vision continues to deteriorate, even though I am now going off of those meditations again.

And I am told the only thing to do at this point is to go off all my psychiatric medication again, which is debilitating. I cannot afford another nervous breakdown . They can take years to recover from, and I don’t have an extra two to three years on my hands.

The blurred vision and light sensitivity were disconcerting, but when I started drooling, I suspected something neurological was going on. I called urgent care and they recommended that I go to the ER. After a lot of scary tests, they determined that I was not having a stroke. I was referred to the ophthalmologist to see if he could help me.

No retinal detachment or pressure in my eyes. Which is good, but it’s also not an answer. I was given steroid eye drops. The symptoms got better for a bit last night (day four of treatment), so I am somewhat hopeful.

I twitch for an hour or two every night, even though I’ve reduced the medications. One would think that tapering off would make things better, not worse. I’m not a professional, but I don’t see the harm in putting me on a waitlist at least for a neurologist. I hear it can take months.

My doctor, however, prefers to treat me like I’m a lunatic. She told me I needed to learn to “take a chill pill.” Lady, if your vision was blurred, you couldn’t look at any source of light, and you started drooling at random, you would be concerned, too. She also suggested I take a bath in a dark room. Well, since I have trouble reading, writing, watching television, and driving, I’m kind of limited as far as other activities are concerned. So kudos to her for being highly insensitive at best, and completely useless to diagnose my condition at worst. She’s almost as useful as the gentleman who told me to “be in nature” to cure my psychiatric conditions. Uh-huh.

And I love my med manager, but the last time I went off all my meds, I had panic attacks for hours at a time. Being off medication renders me non-functional as well. So I have two choices. Blind as a bat, or bats*** crazy.

Speaking of bats, my current theory is that I was bitten by a vampire and didn’t know it. The aversion to sunlight makes sense. The drool must be blood lust.

In the meantime, my cat sitting gig and in-person doctor visits have been put on hold. I can’t easily apply for new jobs. I’m ok with help from family and money in savings for now. But this is beyond frustrating.

My med manager is doing a DNA test for med compatibility. That is, as soon as I can get a ride to her office. I think I’m done for now. This hurts too much.