Lightheaded

Mid-January 2014

“Postural Orthostatic Tachycardia Syndrome.”

All of the thoughts swirling around in Jillian’s head were silenced by those four words that she couldn’t even comprehend. She was only 75% sure she knew what two of them meant and only 10% sure she’d heard any of it correctly. Dr. Collins must have recognized the clueless expressions on their faces as she continued.

“It’s a form of dysautonomia,” she spouted off, “Which is all a very complex way of saying that a system in your body isn’t regulating itself like it should be. That system is called your autonomic nervous system and it controls all of the things you don’t even think about, such as blood pressure, heart rate, temperature, digestion, etc.”

Jillian and Harry both tried to absorb it all, but it felt like it was all going over their heads. Jillian felt like her brain was doing a hundred miles an hour, kicking up dust and debris that she couldn’t even see.

“A-am I going to die?” the words left her lips before she could stop them. It was childish and laughable, but instinctive.

“Absolutely not,” Dr. Collins smiled softly and reassuringly, “Though POTS and dysautonomia are typically chronic, neither are fatal.”

“Ch-chronic?” Harry’s voice cracked and Jillian almost missed it over the sweeping relief of being told she wasn’t dying, even if she felt like it some days.

“Let’s not get ahead of ourselves,” the doctor shook her head, brows furrowed, “Though I’m fairly certain you’re showing classic signs of POTS, we’ll need to do some testing to narrow down your form of dysautonomia before we can start discussing prognosis and treatment. The important thing is, you’re okay, you’re going to be okay, and we’re taking a huge step in the right direction of finding out what’s going on.”

Dr. Collins spent nearly three hours with them and sent them home with a massive folder of information and an appointment for the following week for something terrifying called a tilt table test. Jillian slept for nearly four hours on the sofa afterwards, her head in Harry’s lap while he pored over the pages and pages of information.

They both took it differently. Jillian didn’t want to read the packets, didn’t want to know more than Dr. Collins had told her, didn’t want to Google anything. Harry on the other hand, wanted to know everything. He highlighted and annotated and emailed her parents multiple times a day. Part of Jillian admired it, but a bigger part of her was afraid.

Two days after the first appointment at around four in the morning, Jillian had found her way into Harry’s bed.

“Harry,” her voice was soft and tired as she slipped under the comforter next to him, “Harry.”

“Hm?” he shuffled a bit as she tucked herself under his arm, his body heat seeping into her, “Wha’s wrong?”

“Nothing,” she lied, feeling her body begin to warm up from head to toe, “I was cold.”

“Tell me.”

She sighed, her chest heavy with hundreds of things unsaid. She didn’t know where to begin.

“I’m scared,” she confessed softly, the words slipping past her lips and into the pillow beneath her cheek that smelled like him.

He was quiet for what felt like forever before a soft, reassuring, “Me too.”

She let out a heavy breath, eyes finally falling shut as she listened to the quiet bustle of the city and the steady beating of the heart next to hers. It was reassuring to know she wasn’t alone in her afraidness. Everything felt like it was changing and shifting and they were scrambling to adapt to the unknown.

“It’s gonna be okay,” his voice cracked just the slightest, “Whatever it is, whatever happens. We’ll figure it out.”

*

Dr. Collins told Jillian the test could take up to an hour, but likely not longer than 25 minutes. She was absolutely terrified.

A horde of nurses and medical students poked and prodded at her, sticking electrodes to her skin, an IV in her elbow, a blood pressure cuff around her arm, a pulse oximeter on her finger. She felt like a lab rat, but Harry never left her side.

For the first fifteen minutes of the test, she was strapped to a horizontal table and supposed to lay as still as possible, while all of the machines read and recorded her vitals. Harry tried to keep her distracted and the mood light, telling stupid medical puns and spouting off movie quotes for Jillian to finish.

By the time it was time for the table to be tilted vertically, Jillian was an anxious mess. Dr. Collins assured her that if any of her numbers indicated fainting or that if any of her symptoms became too much, they’d return her to horizontal. She knew she was in capable hands and that she had to tough it out if she wanted to find out what was going on with her body. That was the only thing that kept her from crying and begging for them to stop it altogether.

Within 60 seconds her heart rate had skyrocketed from 80 to 130 beats per minute. Within minutes, it was nearing 200 and they were tilting her back to horizontal and Harry was at her side. It had all been a rush of her strongest symptoms and being unable to control it or say how she felt. It was overwhelming.

“You alright?” his voice was soft and concerned in her ear. She could barely hear it past the blood rushing back to her head.

She shook her head, tears threatening to prick at her eyes as her stomach sloshed around. It was the worst feeling she’d ever experienced, every symptom stronger than ever and all at once.

“There’s a bin here if you need it, hon,” Grace, her nurse assured her, “I’m going to go get you something to take the nausea away.”

“You did excellent,” Dr. Collins assured her, “Though, I know it doesn’t feel like it.”

Grace returned quickly with a pill, Zofran, to dissolve on her tongue and some Pedialyte to wash it down with. Neither of them sounded very appetizing but Dr. Collins assured her they would help. She trusted her.

They gave her a few minutes to recover, her pulse going back to “normal” within 60 seconds and her blood pressure following soon after. All of the medical students were taking notes and Dr. Collins was explaining it all to them, but none of it registered with Jillian. She was in shock of how one simple motion could bring on everything she’d been noticing in the past few months. She couldn’t wrap her head around the way her body was acting.

When she could tolerate it again, Grace helped her into the chair next to Harry with some crackers and apple juice. The medical students had dissipated and eventually it was just Dr. Collins and the two of them. Jillian’s nausea had settled into a pit of nerves.

“Based on your bloodwork and your tilt table test today, I’m going to officially diagnose you with POTS, as we talked about last week,” Dr. Collins announced.

Jillian managed a nod, letting the words sink in a bit but still trying to concentrate on what was being said.

She dumbed it down for them as best as she could. She told them she could outgrow it, or find a magic combination of pills that would regulate her heart rate and blood pressure, or she could learn to manage. Likely, it would be a little bit of both.

The problem was that when she stood up, the blood vessels in her limbs and abdomen weren’t constricting, forcing her blood to pool, and her heart was working double time trying to compensate. There was no way to know the cause of why her autonomic nervous system was failing or what her triggers were. Everyone was different, everyone experienced different symptoms and side effects and results. Treatment would be more trial and error than anything else. They would be learning as they went along.

“Now,” Dr. Collins said eventually, “I think I’ve overloaded you enough for today, but do you have any questions?”

Jillian swallowed harshly, “H-how did you make this so simple? I-I’ve had the same pediatrician for my entire life and all he did was write me an antidepressant prescription.”

“Nearly 80% of POTS patients report a physician insinuating their symptoms were merely psychological,” she informed her with a soft smile, “You aren’t alone and I know it doesn’t seem like it, but you’re one of the lucky ones. Almost 40% of patients suffer from symptoms for five years or longer before a diagnosis.”

Just the thought of that horrified Jillian. She couldn’t even wrap her head around it. She would have driven herself and her family and Harry insane if she hadn’t found the right answer.

“And honestly,” she nodded with twinkling at Jillian’s legs, pulled to her chest to subconsciously stop her blood from pooling, “Sitting like that is a pretty good indicator.”

*

The breakdown was inevitable but Jillian had hoped she’d at least resume classes before it happened. Instead, it happened the night after her test, after her and Harry had Facetimed her parents with an update.

She was laying on the sofa (with her feet up to increase blood flow), flipping through the pages of more information she’d been given at her appointment while Harry heated her some chicken broth. They were filled with treatment options, tips, websites, and more and it was all too much. She couldn’t wrap her head around the fact that this was her life now, this was why everything felt so wrong.

“Jilly?” Harry found her with the papers on the floor and tears in her eyes.

“H-how am I supposed to do this?” her voice broke and she felt something in her chest crack open too.

Harry was quiet, racking his brain for an answer. He set the cup of broth down carefully and perched himself on the edge of the sofa.

“Do what?” he asked carefully, brushing strands of dirty hair away from her face.

“Th-this,” she motioned at the papers, “M-medications and physical therapy a-and work and school!”

“You’ll do it because you have to,” he shook his head, “You’ll do it because you’re the strongest, bravest person I know, Jilly. I’ll be right here every step of the way and if it all gets to be too much, all you have to do is tell me. I’ll be here.”

She felt the sob bubble up in her throat and push past her lips before she could stop it. The next thing she felt was Harry’s arms wrapping around her, warm and steady and safe. He felt like home, like curling under your childhood comforter after a bad day or sipping tea after getting caught in a rainstorm. With him by her side she’d be okay, even if it didn’t feel anything like it, even if she was terrified.

He held her as she cried, assuring her that it was okay, that she was okay. She just needed to get it out, she was allowed to be scared, to feel weak. She’d bottled it up for too long.

“Harry,” she mumbled into his shirt, hands curled into the back of it. She’d ended up practically in his lap at some point. Her eyes and chest ached.

“Hm?” he hummed, hands still rubbing up and down her spine, soothing and steady.

“A-are we good now?” she sniffled into his neck, the last of her tears dripping onto his skin.

“What are you on about?” he let out a little laugh.

She hesitated, nerves prickling in her stomach, “F-first we were fighting and then we weren’t really a-and then we…” she trailed off, not sure how to word what she was getting at, “O-on new year’s-”

“Yeah, Jilly,” he cut her off with a sigh and a kiss to the top of her head, “We’re good. We’re always good.”