When we last left our hero (me), I was recovering from a jaundice of unknown etiology and losing my toenails as the aftermath of some kind of infection. I had been lulled into thinking that since my symptoms were resolving, that I was actually getting better.
I thought it was a little weird when the skin on my hands started to peel off, but figured my skin was just dry.
When PH mentioned that my eyes were looking bloodshot, I shrugged it off.
The next morning, I walked to the bathroom sink, scratching my hands irritably, to look for moisturizer, and glanced at my face in the mirror.
“Oh my GOD,” I said.
“What?” mumbled PH from the bed.
“My EYES!”
“I told you…”
I looked like a character from a Stephenie Meyer… well, I won’t say novel… collection of pages with words on them.
My eyes were flamingly bloodshot, angrier than the angriest pink eye. But they felt totally normal. No sand in my eyes, no itching, no pain. They felt normal, but looked distinctly scary.
“Well, that’s weird…”
I was also having a lot of weird muscle pains. It felt like I’d spent a day hiking up mountains, instead of two weeks lying around letting other people take care of my three year old. My hands continued to peel, shedding large pieces of parchment-like white flakes all over our house.
I booked a follow up with my useless GP when we arrived home and gave her all my records. She didn’t even shine a light in my eyes. She glanced over the paperwork I brought from Nova Scotia, and ordered repeat blood tests to make sure my liver enzymes continued to improve. She said the same thing all the other doctors had:
“I think this is some kind of a virus. Just rest and it will keep improving.”
“My mother thinks I have leptospirosis, because I work with animals and it can cause red eyes,” I said.
There was some tapping at the computer. I strongly suspect my doctor was googling leptospirosis.
“Well, I can add on a test for it but I think this is viral.”
I tried to go back to work.
It didn’t go well.
I shuffled aroound in my Crocs, alarming clients with my red eyes, routinely sweeping up my skin cells as they littered the floor, and then sinking to said floor to rest in between appointments.
“Go home,” my boss said.
My head was starting to hurt.
Like, really hurt.
Then, on Saturday, after a nice morning out with Owl and PH, I got really dizzy. Our plans for the afternoon tanked as we waited unsuccessfully for the dizzy spell to fade.
By Sunday, the dizziness was still there, the muscle pains were still there, and the pain in my head felt really bad.
It’s funny how many kinds of discomfort there are. The liver problems had been a new kind of misery to me. We know what pain is, and nausea is, but a sick liver felt like neither of those things. It just felt very, very wrong.
My head pain was the same. I’ve probably had migraines that were more painful, but this head pain felt worse. It felt… bad. Migraines suck but they have never made me worry that something was seriously wrong with me. But this head pain felt like my brain was swelling and pressing into my skull. It felt like my head was going to burst. I could hear the whooshing of my pulse going past my left ear. I felt like the muscles in my neck were keeping the blood supply from leaving my brain, like a knot in a balloon.
PH took me to the E.R.
What a waste of time.
They got my history – which took a while, considering all the symptoms – and then repeated my bloodwork and then told me that it was probably viral and that my liver was improving and that I should just rest and I would be able to fight this off. They gave me some Tylenol 3 for my head.
It didn’t really help.
I mean, it muted the pain a lot, but not the BAD feeling, the feeling of pressure, the feeling of something really WRONG. It sure didn’t help with the dizziness, either. I even threw up one morning from it.
After three more days of it I went to the G.P. again.
“Your liver values are improving, so you are getting better,” said my doctor again.
“But I don’t FEEL better,” I snarled. “I feel WORSE. And WHY ARE MY EYES RED?”
She actually shone a light in my eyes this time.
“I think it’s all just related to the virus. Just rest and it should go away. I could order you a CT Scan, but it would probably be wait listed weeks. If it gets worse, or if you start showing symptoms of meningitis, you should go to the E.R where they can do those things right away. The symptoms of meningitis are usually a pounding, throbbing sensation, and a very stiff neck.”
“But my head IS pounding, and my neck IS stiff. A lot of my muscles are stiff.”
“Yes, but meningitis is like a hammer is knocking your head, and usually you can’t touch your chin to your chest.”
“But I can’t touch my chin to my chest…”
“Well, if it gets worse, or you start to develop symptoms of meningitis, you should go to the E.R. Otherwise I’ll see you in a week or two.”
We left, still unsure of how my symptoms differed from meningitis. The next morning, when my neck was still painful and my head still wooshing, PH took me down to the E.R. again.
This time I badgered the doctors. “My GP said I should be checked for meningitis,” I said somewhat incorrectly.
The E.R. doctor, who had seen me the last time I came in, kept insisting that I just had a migraine while I fought off the viral infection. But after he pushed on my head a couple of times and listened to me whimper, he did say, “well, I suppose it COULD be viral meningitis. We’ll do a CT and a lumbar puncture just to be sure.”
So I had the CT which was easy, and the lumbar puncture which was TERRIBLE. The E.R. doc kept pressing on my hip bones to landmark, and he pressed so hard that I had bone bruises for days afterwards. He kept missing the spot and having to poke me again. The pain of a lumbar puncture probably isn’t as bad as it seems, but it’s a very scary pain. Like the feeling in my head, it just felt bad. I passed out at one point.
My epidural doctor could have shown this guy a thing or two.
Finally he managed to hit the right spot. He put me on fluids while they waited for the results. He came back and said my LP was clear, that I was just fighting a virus, but that he’d refer me to their internist “because they love this sort of stuff.” He gave me Dilaudid for the head pain and sent me home.
The Dilaudid did help with the pain but the the pain was never as much of an issue as the bad feeling. No matter what pain meds I took, the feeling of pressure in my skull, the wooshing noise in my ears, the spots and crescents that danced in my peripheral vision, and the dizziness did not change.
I limped through another week of trying to work and going home after a couple of hours. I couldn’t write. I couldn’ play computer games. I could only lie on the couch or in bed. Sitting up made me feel worse, and walking felt weird. When I moved my head too quickly, my vision would fill with a swarm of bees and go black for a second. Even as my appetite slowly returned, I felt worse in many ways than I had when I was jaundiced but still able to walk around and chat happily with my friends.
I finally got an appointment with the internal specialist at the hospital. She listened keenly to my whole saga and asked a lot of questions. She looked at my eyes and had no idea why they were so red.
“Well,” she said eventually, “It’s very weird. I think you should see an ophthalmologist for your eyes to see if any light can be shed there. There’s clearly inflammation in your eyes but the cause is probably systemic so I don’t know if he’ll be able to add anything. And then I will refer you to a neurologist, but this will probably have resolved before you get an appointment. I do think this is likely viral. You need to rest.”
“But I’ve been resting! I was on vacation for half of this! I’ve only been working for an hour or two a day!”
“But that’s not COMPLETE rest.”
“I’ve spent most of the last month lying around. I think I should just suck it up and go back to work.”
“I think that’ a really bad idea.”
“Well, my coworkers have been covering me for over a month.”
The doctor ended up writing me a note saying I was not to go in to work this week. She felt that a good week spent in a horizontal position would fight off this thing.
“On the off chance that it doesn’t, I’ll send in a referral to a neurologist. When you feel better you can cancel it.”
After a week of lying around in my bathrobe watching Downton Abbey and Breaking Bad, I did feel a little better. The dizziness was improved, the head pain mild, and I was beginning to adjust to the feeling of pressure in my skull. My skin had finished peeling on my hands, and another toenail had come off. I could wear real shoes now. My eyes were even a little less red.
much better
So I went back to work. My vision still blacked out when I stood up, I still had migraine-like visual disturbances, and I was used to the wooshing noise in my head. But I could function.
After a couple of days, some of the dizziness returned. But I could still function.
The bad feeling was gone. I don’t mean the actual physical sensations, but it was like my body had stopped trying to send off alarms. The feeling of pressure at the top of my skull, the weird vision disturbances, even the occasional dizziness, all now felt… normal. Like, that’s just how life is now. If you move your head too fast, you just stop, wait for the bees to go away, and keep expressing that dog’s anal glands.
I had adjusted. It didn’t even bother me when I took a bath and then found one of my toenails floating in the bath water. I just calmly inspected my feet, found another one flapping around half off, and gently loosened it off, then put the toe yellowed, thickened nails on the edge of the tub and went back to my book.
(If you are morbidly curious and want to know what a foot with three toenails missing looks like, click here. If you aren’t… be grateful that I didn’t insert that photo directly into the post.)
When it came time for my optometrist appointment, I wondered if I should cancel. What could he tell me? My eyes were still bloodshot, but not nearly as badly.
It turned out to be the most useful appointment I have had yet.
After asking a lot of questions about my weird medical history, he looked in my eyes and frowned.
“Your optic nerves are swollen. You said you had an LP?”
“Yeah, it was clear.”
“Did they check your intracranial pressure?” he asked.
“I… assume so? I mean, considering that I was at the E.R. because I said I felt like my head was going to explode, they must have checked that…”
“Yes, they must have…” he said. Then he asked me more questions about my visual disturbances, the exact feeling in my head. He kept nodding his head at my answers.
“Who is coordinating your medical care? Your GP?”
“I don’t really know,” I said. “The last person I saw was the Internal Medicine specialist, but she said the next step was to see you, and the neurologist. She said there wasn’t much else she could do for me.”
“And when is your neurologist appointment?”
“Not til July 10th.”
He sighed and thought. “That’s not too bad…”
Then he showed me a graph. “This is below normal optic nerve size. This is the normal range. And up here, this black line, is yours. I really wish I knew what your intracranial pressure was on your LP.” He sighed again. “I mean, this could all be due to some kind of infection… or… something autoimmune…”
I assume he meant lupus. People keep saying to me, “maybe you have lupus.” As a House, M.D. fan I just keep saying, “IT’S NEVER LUPUS.”
He decided to put me on prednisone eye drops for a week and then check my optic nerves again while we waited for the neurologist. He said he’d send his report to my GP and suggested I follow up with her. He booked a recheck for me in a week.
The redness in my eyes were gone after a day of drops, but of course it didn’t change my actual head or vision issues at all.
I’ve been googling symptoms of increased intracranial pressure. You know what they are?
- A “wooshing” noise in the ears coinciding with the pulse
- Headache occasionally causing nausea
- Transient spots or crescents in the vision
- A greying out of vision sometimes leading to complete blackout after sudden position changes
- Swollen optic nerves
SOUND FAMILIAR?
I don’t care if that E.R. doctor DID check my intracranial pressure. If it did read normal, IT WAS WRONG.
BUT WHY???
If By Yes 
Wow … and not in a good way. 😦
What you’re going through sounds both horrifying and terrifying. I HATE that the doctor’s “go to” response to anything they don’t understand is either “virus”; “auto-immune disease” or “mental illness”!!
I WISH I could help in some way. All I can tell you is that (in a much much much much less … ok nothing like you) … but I’ve also gone for months without a proper diagnosis before, and I know how awful that is. What that experience taught me was to keep trying different doctors, until I found one that actually KNEW what was going on!!
Trust your own instincts. Write every single symptom down in a journal (if you can). Time, severity every little detail you can remember. There simply HAS TO be an answer! With our network of moms, I’m positive that (between us) we can find someone willing and able to help. Email me and I’ll do everything I can to help get you the answers you need.
Meanwhile, stay strong. You’re one of the most amazing people I know. You’re very intelligent and a great writer (amongst other virtues) this will NOT get the best of you!! I’m sending you all my love and best wishes.
I was actually thinking it sounds like an episode of “House”, but the patients on there are fictional. Much, much worse in real life. 😦 COULD it be lupus, though?
For the skin peeling off, I seem to recall scarlet fever can cause that, and it seems to be going around. Hm, although that seems to be mainly affecting children.
At any rate, I hope the docs can get to the bottom of what has happened to you so that you won’t have to suffer the same ever again! xx
Edge of my seat with this story, man. Edge of my freaking seat.
This sounds really horrible – sending good wishes your way and hoping the doctors stop being lackadaisical and work out what it is very soon xx
I just assumed you were busy!
Just awful to not even know what’s causing all of that. Do continue to be a strong advocate for yourself so they don’t brush you off. I hope you have answers soon.
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I would really appreciate finding out what it was – as i have had the exact same symptoms and progression, to me it is either Lupus or a Drug allergy, did you by chance have any new antibiotic or a drug like allopurinol etc?
No I had had no new medications. They never found out what it was – they just left it at “viral hepatitis” even though they never figured out WHAT virus, even after an infectious disease specialist tested me for everything under the sun. They ruled out lupus because I had a negative ANA test but I still suspect it was autoimmune… If you get diagnosed please let me know!’