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.
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…