Solutions for Neck Pain and Headaches in Hypermobile EDS - Full Guide
If you live with hypermobility, especially if you have hypermobile Ehlers-Danlos Syndrome (hEDS) or Hypermobile Spectrum Disorder (HSD), chronic neck pain, dizziness, or headaches might be a regular part of your life. It’s easy to dismiss these symptoms as oddities of hypermobility or even just signs of aging, but they could point to a specific issue: Upper Cervical Instability (UCI).
What Is Upper Cervical Instability (UCI)?
Upper cervical instability refers to excessive motion in the upper part of the neck, where the skull meets the spine. This instability often involves the atlanto-occipital (C0-C1) and/or atlantoaxial (C1-C2) joints. For some, UCI causes mild discomfort, but for others, it leads to severe symptoms like neurological issues, dizziness, or even fainting spells. Research shows that mild UCI might affect up to 52–66% of people with generalized joint hypermobility, while more severe cases occur in about 5% of this group.
Even mild UCI can negatively impact your life if left untreated. That’s why recognizing it early and taking appropriate steps is crucial.
Red Flags to Watch For
If you experience any of the following symptoms, seek immediate medical attention:
Persistent dizziness or vision changes.
Significant loss of coordination or balance.
Severe headaches that worsen with activities like coughing or straining (often described as the most unrelenting headache you’ve ever experienced).
These warning signs may indicate a serious condition that requires prompt evaluation by a healthcare provider.
Managing Upper Cervical Instability
While UCI can feel overwhelming, there are actionable steps you can take to manage it effectively. Let’s break these down:
Step 1: Understand Your Irritability Level
Before diving into treatments, it’s essential to understand how irritable your neck is. This will help you and your physical therapist choose the right interventions and avoid setbacks. Here’s how to gauge your irritability:
High Irritability: Difficulty tolerating being upright, significant flares from small movements or light activities, and recovery times exceeding 24 hours.
Moderate Irritability: Mild to moderate symptoms during daily activities, with flare-ups resolving within hours or overnight.
Low Irritability: Mild symptoms that don’t significantly limit daily activities, with flares resolving quickly (within minutes to a few hours).
For those with high irritability, using a neck brace can provide stability and reduce strain. However, avoid overusing it to prevent muscle deconditioning.
Step 2: Focus on Posture and Breathing
Good posture plays a vital role in managing UCI. Keeping your head and neck aligned helps reduce strain on the cervical spine. Working with a physical therapist to strengthen postural muscles is an excellent way to build stability.
Additionally, slow, diaphragmatic breathing can:
Relax overworked muscles.
Reduce fight-or-flight tension.
Support overall neck stability.
Step 3: Safe Exercises Based on Your Needs
Exercise is critical for managing UCI, but it must be tailored to your body’s needs:
Start with pelvic and lumbar stability exercises to create a strong foundation for your neck.
Progress to scapular and cervical motor control training, such as gentle chin tucks or scapular squeezes.
Gradually add isometric exercises to build neck strength without moving the joints.
Finally, incorporate strengthening and proprioception exercises through controlled ranges of motion.
Adjunct treatments like gentle manual therapy, myofascial release, or biofeedback may also help. Remember, every person’s path to healing is unique. Work closely with your healthcare team to find what works for you.
Additional Tools for Recovery
One example of a helpful tool for neck strengthening is the NecksLevel device. Unlike traditional strengthening exercises, which may not suit hypermobility and UCI, this machine offers gentle, controlled resistance to help build strength safely.
Supervised physical therapy sessions and exercises designed for hypermobility can help ensure you’re progressing in a safe and effective way.
Find Support in the Hypermobility Community
Living with hypermobility isn’t easy, but you don’t have to face it alone. Our private online community at HypermobilityPT.com is a free space where people with hEDS and HSD can connect, share tips, and find encouragement. Together, we can navigate the challenges of hypermobility and build a brighter future.
You’re Not Alone
With the right tools, treatments, and support, you can manage upper cervical instability and improve your quality of life. Don’t let UCI define your journey—take the first step toward relief today.
If you found this post helpful, please share it with someone who might benefit. And remember: healing takes time, but every small step forward matters.
Disclaimer: This blog is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider regarding your specific needs.
References: Russek, L. N., Stott, P., Adamczyk-Król, M., & Chopra, P. (2023). Upper cervical instability in hypermobility spectrum disorders and Ehlers-Danlos syndromes: A scoping review of case reports and series. BMC Musculoskeletal Disorders, 24(1), 45. https://doi.org/10.1186/s12891-023-06110-7
