How to Manage Invisible Symptoms of Hydrocephalus at Work
Living with hydrocephalus means navigating a world where many of the challenges we face are invisible to those around us. For those of us managing symptoms like headaches, nausea, chronic pain, and fatigue, the workday can often feel like a balancing act. While it’s not always easy, we’ve found that acknowledging these hurdles and using practical strategies can make a big difference in maintaining productivity and well-being.
Understanding Invisible Hydrocephalus Symptoms
The symptoms of hydrocephalus can vary widely, but many of them are unseen yet deeply impactful. Here are a few that we’ve personally dealt with:
- Headaches: These range from mild to severe and can be triggered by changes in intracranial pressure (ICP), weather (like barometric pressure changes), migraines, or shunt complications.
- Chronic Pain: This can manifest in various parts of the body and often accompanies headaches or other neurological impacts.
- Nausea: Often tied to headaches or pressure changes, nausea can make it hard to focus or feel comfortable.
- Cognitive Challenges: Struggling with memory, focus, or problem-solving can make even routine tasks feel overwhelming.
- Emotional and Behavioral Changes: Anxiety, depression, and irritability are common and can complicate workplace dynamics.
- Fatigue: Persistent fatigue can drain energy and make it hard to stay productive.
- Sensitivity to Stimuli: Bright lights or loud noises can exacerbate discomfort or pain.
- Impulsivity: Difficulty with self-regulation can lead to challenges in decision-making or interpersonal interactions, adding complexity to work and personal relationships.
Recognizing these symptoms as part of hydrocephalus is the first step to finding ways to manage them effectively during the workday.
Strategies for Managing Pain and Symptoms at Work
Over time, we’ve developed some go-to strategies for getting through the workday, even on challenging days. Here’s what works for us:
- Create a Supportive Workspace A comfortable and well-organized workspace can make a world of difference. Ergonomic tools, like an adjustable chair or desk, help minimize physical strain. Noise-canceling headphones and dimmable lights can also reduce sensory triggers.
- Example: Using a laptop stand and external keyboard helped one of us relieve neck and shoulder pain.
- Prioritize Tasks and Plan Ahead Staying organized reduces stress. Breaking tasks into smaller steps and using planners or apps helps us keep track of what’s most important.
- Take Intentional Breaks Regular pauses to stretch, walk, or rest refresh both the body and mind. The Pomodoro Method—working in focused intervals followed by short breaks—is a technique we’ve found helpful.
- Example: Taking a 5-minute break every 25 minutes to do a quick yoga pose or drink water helps reset focus.
- Stay Hydrated and Nourished Hydration and balanced meals keep energy levels steady and reduce the likelihood of headaches or fatigue.
- Tip: Keep a reusable water bottle at your desk and set reminders to drink regularly.
- Manage Pain Proactively Preparation is key. Keeping cold packs, heating pads, or relaxation aids nearby ensures that relief is always within reach. Practicing mindfulness or relaxation techniques during moments of discomfort helps too.
- “Managing symptoms starts with preparation—keep your essentials close and your strategies ready.”
- Open Communication Being open with employers or trusted colleagues about hydrocephalus fosters understanding and allows for accommodations like flexible schedules or remote work.
- Example: Discussing options like a quieter workspace or adjusted hours has made workdays much more manageable.
- Incorporate Movement Gentle stretching or short walks throughout the day help alleviate stiffness and improve circulation. Desk exercises or light yoga can also make a big difference.
- Example: Desk yoga videos on YouTube are quick and effective.
- Prepare a Symptom Management Kit Having essentials like water, snacks, and stress-relief tools within reach makes the workday more manageable and reduces disruptions.
- What to include: A water bottle, noise-canceling headphones, soothing scents (like lavender oil), and a notepad for quick journaling.
When to Seek Additional Help
Sometimes, symptoms may worsen despite our best efforts. Keeping a journal to track patterns and triggers can help identify when it’s time to consult a healthcare professional. Adjustments to treatment plans or medications may be necessary.
Building Resilience
Working while managing hydrocephalus is an ongoing journey of resilience and adaptability. Through small adjustments—like creating a personalized workspace or taking regular breaks—we’ve found ways to not only cope but thrive. Each day is a chance to learn what works best and to celebrate the progress we make, no matter how small. If you’re on this journey too, know that you’re not alone—together, we can navigate the challenges and find our strength.
Resources for Support
- Hydrocephalus Association Community Networks: Join virtual hydrocephalus support groups to connect with others who understand your journey and share experiences.
- HydrocephalusCONNECT, Peer Support Program: Connect with a trained volunteer who has faced similar challenges, offering guidance and understanding.
- Hydrocephalus Association Resource Library: Explore a wide range of blogs, articles, videos, and other resources in HA’s Hydrocephalus Resource Library, all specifically curated to support individuals living with hydrocephalus.
- Apps for Symptom Tracking: Apps like HydroAssist® can help track symptoms, monitor changes, and identify triggers.
- Online Communities: Engage with forums or social media groups dedicated to hydrocephalus for shared advice, encouragement, and support from a wider community. Visit the Hydrocephalus Association’s closed Facebook Groups.
Information you can trust! This article was produced by the Hydrocephalus Association, copyright 2025.