Concussion Recovery and Ehlers-Danlos Syndrome (EDS): A Comprehensive Guide for Patients

If you’re living with Ehlers-Danlos Syndrome (EDS), recovering from a concussion can be a bit more challenging due to the unique complexities of EDS. Symptoms may linger longer, and you might face additional issues related to joint hypermobility, craniocervical instability (CCI), atlantoaxial instability (AAI), and autonomic dysfunction (like POTS). In this post, we’ll walk you through what to expect during concussion recovery, specific steps tailored to EDS patients, and how to manage your symptoms along the way.

Why Is Concussion Recovery Different for EDS Patients?

EDS can make concussion recovery more complicated because of the way it affects your joints, nervous system, and connective tissue. For example:

• Joint Hypermobility: Your joints, especially in your neck, may be more unstable after a concussion, increasing the risk of pain or neurological symptoms.

• Craniocervical Instability (CCI) and Atlantoaxial Instability (AAI): These conditions involve instability at the base of your skull and the top of your spine, which can make concussion symptoms worse or more persistent.

• Autonomic Dysfunction (POTS): You may already deal with symptoms like dizziness and heart rate fluctuations, which can be worsened by a concussion.

• Mast Cell Activation Syndrome (MCAS): Concussions can trigger flare-ups, causing symptoms like fatigue, headaches, and inflammation.

Phase 1: Rest and Protect (First 3 Days After the Injury)

Immediately after a concussion, your body needs rest—both physical and mental. This is crucial for healing, but it’s especially important if you have EDS.

Key Tips for Phase 1:

1. Cognitive Rest: Avoid mentally demanding activities like reading, watching TV, or using your phone for the first 24-48 hours.

2. Cervical Spine Protection: If you suspect neck instability or have a history of CCI or AAI, you may need to wear a soft collar to protect your neck and prevent further injury.

3. Symptom Monitoring: Keep track of your symptoms, such as headaches, dizziness, or sensitivity to light and noise. If you experience neck pain or worsening neurological symptoms, contact your healthcare provider immediately.

4. Manage Mast Cell Flares: If you have MCAS, this might be a time when symptoms flare up. To manage inflammation, use your prescribed mast cell stabilizers (e.g., quercetin, antihistamines).

Phase 2: Reintroducing Gentle Activity (Days 4-14)

Once the initial symptoms have settled, you can begin slowly reintroducing low-level activities. Remember: in EDS, slower is better.

Key Tips for Phase 2:

1. Start Light: Activities like gentle walking or light housework can be reintroduced but stop immediately if symptoms return.

2. Vestibular and Eye Exercises: You may notice dizziness or trouble focusing your eyes. Your physical therapist might introduce gentle eye-tracking exercises to improve this, starting with small, controlled movements.

3. Gentle Neck Exercises: If you have neck instability, you’ll need specific exercises to stabilize the neck without straining it. Simple isometric exercises (where you engage muscles without moving your neck) can be helpful under your therapist’s guidance.

4. Postural Support and Balance: Start with easy balance exercises, like standing on one leg with support, while protecting your joints.

Phase 3: Building Strength and Endurance (Weeks 2-6)

As you progress, you aim to increase your activity levels without triggering symptoms. Your physical therapist will help you balance the need to build strength while protecting your joints and managing your symptoms.

Key Tips for Phase 3:

1. Low-Impact Aerobic Exercise: Activities like using a recumbent bike or swimming are great ways to gently increase your heart rate without stressing your joints. Make sure to keep these activities at a low intensity at first.

2. Gradual Neck Strengthening: Your therapist will continue working with you to stabilize your neck, but this phase may involve more movement and gentle stretching as your body allows.

3. Strengthen Your Core: Core stability is key to protecting your spine. Your therapist may introduce exercises like bridges, modified planks, or Redcord® suspension exercises to engage your core without straining your neck or joints.

4. Balance and Proprioception: Balance training helps you regain stability and coordination. These exercises may get progressively harder, but the focus will always be on control and safety.

Phase 4: Returning to Normal Activities (Weeks 6-12)

By this stage, most of your concussion symptoms should be well-managed, and you’re likely ready to reintroduce more complex activities. This phase focuses on preparing your body to return to normal daily activities or sports, if that’s your goal.

Key Tips for Phase 4:

1. Increase Aerobic Activity: You can now start to gradually increase the intensity and duration of your aerobic exercise. Be mindful of your heart rate and stay within safe limits to avoid triggering POTS symptoms.

2. Build Full-Body Strength: Strengthen your muscles while continuing to protect your joints. You’ll likely be doing functional exercises (e.g., squats, lunges) that mimic daily activities while focusing on maintaining proper posture and alignment.

3. Dual-Task Training: If you’re preparing to return to a sport or other complex activity, your therapist may add in cognitive challenges while exercising to simulate real-life situations (e.g., multitasking, sports drills).

Monitoring and Adjustments

Throughout your recovery, monitoring your symptoms and adjusting your activity levels based on how you feel is important. Recovery timelines vary, and EDS patients may take longer to recover fully due to the complexity of your condition. If you experience any return of symptoms, slow down and consult with your healthcare provider or therapist.

Red Flags to Watch For:

• Worsening neck pain or headaches: This could indicate issues with neck instability (AAI or CCI).

• Increased dizziness or heart palpitations: These symptoms could point to autonomic dysfunction (POTS) being aggravated.

• Mast Cell Activation Symptoms: If you notice more frequent allergic-type reactions, fatigue, or brain fog, you may need to adjust your activity levels or medications.

Conclusion

Recovering from a concussion is always a challenge, but those of us with EDS need to take it slow, listen to our bodies, and work closely with healthcare professionals who understand our unique needs. The key is patience—gradually building your tolerance to activities while protecting your joints and managing other symptoms like POTS or MCAS.

Remember, every EDS body is different, and healing timelines can vary. Stick with the process, and you’ll be able to safely return to your normal activities with less risk of setbacks. Always consult your physical therapist or healthcare provider for guidance and adjustments specific to your condition.

If you have any questions about your recovery, feel free to reach out to our team. We’re here to support you every step of the way!