Summer 2018 headaches Part 3

Day 3 of 14 in the hospital with fungal meningitis. I was sharing a room with a curtain between us. 

The old guy on the other side of the curtain’s family was always there. They were really loud. Nice, but always talking, face time phone calls… It was like a party over there. Megan came to visit me, and brought a big bucket of candy for the nurses. That may or may not have led to my move to a much quieter room/roommate. Megan crawled into my bed and they wheeled us into the new room. 

Around Friday night (day 4 inside) I realized that I hadn’t eaten anything since Monday. I had been in so much pain, and in and out of sleep, that I never thought about eating. I missed the cutoff to order supper, but my nurse was able to find me a beef dinner they had sitting around. I picked at it. 

Saturday morning, I started to turn a corner. I’d had four doses of the daily I.V. medicine by then. I was still pretty sick, but I had my appetite back, and Megan came to visit WITH Ozzie! I hadn’t seen him since I could barely take pictures on the morning of his first day of school. 

I realized how blessed I am to be married to a nurse that morning. She clipped my fingernails, and helped me take a shower. I wasn’t out of the woods yet; I needed that help to take a shower. While she was there, another doctor came in to give me another spinal tap (it's how they monitor the disease). 

This ‘doctor’ (resident) was alone. Megan told him that she’s a nurse and can help. I rolled on my side in the fetal position, and this doctor put the needle in, but didn’t find my spinal cord. He had to try again. And again. 

And again. 

Remember when I said that I wouldn’t call spinal taps painful? This one was, because he went in and out with the needle many times. Megan saw the whole thing. She said that he did it over a hundred times. 

I said ‘I know he did it a lot, but if you had to give a real number, like if you had to bet money on it, what do you think it would be?’ She got a cold, serious look. 

“A hundred.”

He NEVER got the spinal tap. He had to send me to radiology to lie face down on an x-ray table so another guy could do it. 

Battle scar

I’ll also remember this Saturday as the day that I got my own room – all by myself. 

Things I'll never forget: My wedding. The birth of my son. The day I got my own hospital room. 

The next day – Sunday – was the Vikings season opener. I was well enough to shave that morning. Feeling a little better by the day, tomorrow would be my seventh day, and my stay would be half-over. I was missing Ozzie like crazy. Missing out on his first two weeks of school, but I was alive. 

The next steps of meningitis for me were brain damage, and then death. I don’t know how close I was to either, and I’m glad not to know. 

The second half of my hospital stay is less interesting, because I was getting better and better. 

I made friends with the nurses who would visit me every day. One brought me a stack of DVDs they had in a back room. I watched part of The Matrix and most of The Wedding Singer one afternoon. I’d seen them both in the 90’s and didn’t think they held up. (Actually I didn't like The Wedding Singer the first time, and still didn't like it this time)

Day ten or eleven - a nurse saw me walking around the floor and said “Oh my God! Are you Andy?!” She took care of me in my first few days. She said she never saw me with my eyes open. I didn't remember her at all. 

I had a total of six spinal taps in the hospital. They say the fungus is still inside me, only it’s dormant. It can wake up if it decides to. I get to have that anxiety now anytime I have a slight headache for the rest of my life. 

My mom brought me a big bag of candy and usually around 2am when I couldn’t sleep (steroid insomnia), I’d get up and munch on it. From not eating anything for four days I lost at least 20 pounds. I could afford to eat a little junk in the middle of the night. 

My last day in the hospital – stupid Dr. Smythe was the doctor on my floor. He came into my room and told me that he reported my case to the CDC. I was the 26th person (ever) to contract this meningitis the way I did. There is no prize for this.

Because stupid Dr. Smythe kept me on the (unnecessary) steroids for so long, I came down with clinical depression. I was well the day I left the hospital, but fell into a deep depression in the following weeks/months at home recovering. 

You can’t just stop taking steroids. That would really shock your system. You have to step down slowly. 

I was finally off them by Thanksgiving, and didn’t feel back to myself until early 2019. This had nothing to do with the meningitis. The extended illness (myriad steroid side effects) was completely courtesy of stupid Dr. Smythe. 

He left the clinic where I saw him, and I like to think that he’s a (bad) night manager at a Dairy Queen now. 

Time for the fun game. 

Wanna guess what the total bill for this 14-day all-inclusive stay in the hospital was? Put your guess in the comments. 

Summer headaches Part 2

 Monday - Labor Day 2018

Ozzie started kindergarten the next day. Megan took him to get some last-minute school shopping done. I was in bed with headaches. So sick of this. It was labor day; clinics were closed. I called my brother to take me to urgent care, but Megan told me that they won’t help. If I wanted any kind of care I would need to go to the emergency room. 

So that’s where she took me. 

First off – nothing is an emergency in the emergency room. I lied in a cot as Ozzie read books and Megan played on her phone for hours. The doctor, or nurse, would come in about every hour to check on me, or try a different pain remedy. The doctor recommended a lumbar puncture (which is what they call a spinal tap now – I think because it sounds more gentile. Like ‘civil unrest’ sounds more gentile than ‘riots and looting’) to see if the worst headache I ever had the other night was an aneurysm, or as she called it, a ‘brain bleed.’ 

I figured 'if I had a brain bleed I’d be dead.' I was quite sick at the time, but that sounded good enough to me to NOT get the ‘lumbar puncture.’ I asked to be discharged from the E.R. and went home, and somehow fell asleep. 

Tuesday 9/4/18

Ozzie’s big first day of school. 

And I had a thick headache when the alarm woke me up. It hurt to walk, or move. Light hurt my eyes. 

Megan wanted to do all of the first day of school photos, and I had to pull myself together enough to snap a few pictures, and then crawl back in bed to ice my head. 

She drove Ozzie to school, came back home and drove me back to the emergency room. 

I had a different doctor this time (it was only about 12 hours since I'd been there) and I liked this one better. She checked in with me more, and tried some different things than the night before; including a long Q-tip soaked in Lidocaine up my nostril (it felt like it touched my brain) for 10 minutes. It did nothing to the pain. When this doctor suggested a spinal tap, I took it. 

One of my favorite comedies

My first spinal tap.  

They had me sit up and lean over a bedside table. I wouldn’t call spinal taps ‘painful.’ It IS very uncomfortable, because you need to stay stock-still while they gently poke a needle into your spinal cord. 

My memory starts to fade from this point through the next four days. I was in and out of consciousness. These memories are in clips. 

The next clip I remember is being told that I have cryptococcal meningitis. They found it from the spinal tap.  It’s a fungal meningitis. I had heard the term meningitis before, but had no idea what it was or did. I would have to look it up later, because it still hurt to look at my phone. Any light hurt my eyes and head. 

I know that Megan went to pick up Ozzie from his 1st day of school at some point, and the next clip I remember is my mother waking me up in the E.R. My dad was there too. Megan had called them to tell them about the whole ordeal. I had an I.V. in my arm, and was waiting for space in a real room to open up. I realized that I was going to have to spend the (my first ever) night in the hospital. 

Next clip - I was very uncomfortable in the ER cot. It was night time, and they still hadn’t found me a room. 

I remember a dose of Dilaudid through my I.V. Dilaudid is the drug they’re always trying to score in Drugstore Cowboy. It did make things feel pretty cool for a minute. 

I have a memory of my parents speaking up to get me a real hospital bed for the wait instead of the uncomfortable cot. I remember a ride in that real bed to my room, which I shared with an old man whose family was with him. It sounded like there were eight people on the other side of the curtain. 

The next morning, the old man’s farts woke me up. I had gas too, and thought hey, I’m on death’s door. Now isn’t the time to hold them in. And we were like dueling (farting) banjos, but neither of us were laughing. 

A doctor told me that I'd need an I.V. treatment once a day for 14 days, so I’d be in the hospital for 14 days. What?! 14 days?! I can’t. 

Our wedding anniversary is 9/20, and we had a trip to Las Vegas planned. Plane tickets, hotel, Penn and Teller tickets, all bought and paid for. 

Cancelled. (Luckily, we were able to recoup most of that)

On one of those first four days, stupid Dr. Smythe stopped by. He’d heard about my diagnosis, and wanted to apologize for not catching it when I told him about my symptoms (when he'd ordered the 1st MRI and said I was having an MS attack). 

I developed meningitis because of the M.S. treatment I was on at the time - Gilenya. It suppresses the immune system. Everyone is exposed to this "fungus" every day. Almost everyone’s immune system is high enough where it doesn’t affect them. Mine was so low that it got me. 

I remember another spinal tap in bed, and this time I was on my side in the fetal position. I had to pee really bad (another benefit of M.S. – overactive bladder), and sprung from bed as soon as he said the needle was out. Blood trickled down my back, and got on my bed sheets. 

Tune in tomorrow for the conclusion of this incident of my life that gave me PTSD. Do I get more spinal taps? (Yes)

And we'll end it with a fun game. 

2018 -The summer with the wicked headaches

    

Summer will always remind me of the worst illness I’ve endured. 

Headaches started in August of 2018. 

I don’t usually get headaches. If I do, it's a sign of something going on. A bad tooth, or stress… Something. In early August 2018 I started getting headaches. They would come and go. Sometimes just an annoyance, but more often I would have to lie in bed with ice on my forehead; which didn’t do anything to the headache, but felt good. 

I was sensitive to light when these headaches would hit, and it would hurt to look at the TV, or my phone, or open my eyes, really. 

Pain pills (Ibuprofen, Tylenol, etc.) didn’t do anything, but I was constantly taking them hoping it would work. 

I thought I was starting to get migraines. My brother gets them. That must be it. 

Wait. I had a crown put on a tooth at the beginning of August. It was just a temporary crown, and I bet it needs to be adjusted. That must be it. 

I went back to the dentist and had him look at it, and he didn’t see anything unusual. 

I had a checkup scheduled with my neurologist (I have M.S.) later in August. I couldn’t wait to ask about the headaches. 

Well; his office called to reschedule the appointment. I said that I needed to see a neurologist, so I saw a different one. 

This other ‘neurologist’ (I’ll call him ‘stupid Dr. Smythe’) thought I might be having an M.S. exacerbation (attack). The only way to diagnose that is to undergo an MRI. It takes about 90 minutes times two. 

I had the stupid MRI, and stupid Dr. Smythe thought he saw evidence of an attack, so he treated it. The current treatment for an M.S. attack is to take 2,500 mg of oral steroids (Prednisone) a day for three days. 

(A ‘normal’ dose is 5-60mg)

Twenty-five 100mg pills a day. These pills are huge, and bitter, and swallowing 25 of them in one sitting is a punishment. I almost threw up every time I had to do it, but I did it. 

And it didn’t do anything to the headaches, because I wasn’t having an M.S. attack. I DID, however, end up with almost every side effect you can get from steroids. More on that later. 

Labor Day Weekend 2018. 

Saturday September 1. 

We went to the MN State Fair for the second time that year. We always spend the whole day there, eating, walking, and more eating. This date holds the all-time record for the highest attendance for one day at the fair, so you were probably there that day too. 

It was hotter than hell that day, but I don’t remember having any headaches. We got there early, like before a lot of places open for the day; and around 4:00pm I started having trouble catching my breath. My fingers and lips felt tingly. I was coming down with heat stroke, and fast. I sat down and fanned myself. I felt bad that I was the reason that we had to leave at 4:00. That’s early for us. 

On the walk back to the car, Megan told me to sit in the shade under a tiny tree on a boulevard, and she’d pick me up. I was struggling, but I needed rest. I ripped off my shirt, and knew what a big, fat, pasty white guy I was sitting in the grass with traffic going by, but it was necessary. 

She picked me up, and I started to feel better about halfway home with the air conditioner blasting, and ice from the cooler in my armpits. 

Heat exhaustion. No headache, but it sure was scary. By the time we got home, we were all hungry. We didn’t get to have our last round of fair food, so we ordered Chinese. The heat stroke episode was over. Still no headaches all day. This should be a nice Saturday night. 

And the rest of the night, until I fell asleep, was unremarkable. 

I woke up in the middle of the night with the WORST headache I’ve ever had in my life. It affected my vision and balance. I was nauseous. I thought I might need to go to the hospital right then, but it was the middle of the night.

I put the ice pack on my head, and somehow fell back to sleep. 

When I woke up for the day (Sunday) I still had a headache, but nothing like the middle of the night. I was supposed to work at 1:30 that day, but I called in sick. 

Around 2:00ish I ate something, and I didn’t feel sick anymore. Sundays at work are a skeleton crew, and I felt bad not being there, so I went in. I was supposed to work until 10:00, but only made it until 7:00 before I got sick again and had to go home. 

Tune in tomorrow to find out what the heck is going on.