OpenHealth Q&A

It sounds like you're experiencing a very challenging situation with your sleep disturbances and associated injuries. Your history with POTS and mitochondrial disease, along with the complications of obstructive sleep apnea and the unusual behaviors during sleep, understandably contributes to your frustration. Let's focus on a clear understanding of your condition and prioritize steps you can take.

Main Points:

1. Your odd sleep behaviors and injuries can stem from disorders like sleepwalking or REM sleep behavior disorder, especially since your sleep studies haven't captured them.
2. Addressing safety in your sleeping environment is crucial to prevent injuries.
3. Consider discussing further management strategies with your healthcare provider.

Explanation:

The behaviors you've described, such as waking up in unusual positions and moving away from your bed, could potentially be linked to disorders like sleepwalking or REM sleep behavior disorder. These conditions can cause people to act out their dreams or perform complex behaviors while asleep, leading to injuries. The fact that your sleep studies did not capture these behaviors suggests they might not fall under traditional sleep apnea or observed sleep disruptions.

Given your existing conditions, it's important to ensure that your sleep environment is as safe as possible. While looking for specific treatments may continue, focusing on practical ways to avoid injury is essential as you navigate this complex situation.

Next Steps:

1. Safety First:

   • Consider padding the edges of your bed or surrounding area with soft materials or cushions to prevent bruises when falling from the bed.
   • Create a clear pathway to the bathroom and minimize obstacles to reduce the risk of injury during nighttime movements.

2. Sleep Environment:

   • Since you sleep directly on the floor, ensure the area is as safe as possible, perhaps by using a thicker mattress for cushioning and laying soft rugs around to prevent burns or bruises.

3. Tracking and Reporting:

   • Keep a detailed sleep diary documenting your patterns, behaviors, and any injuries. Noting the time of events and any potential triggers can be helpful for your healthcare provider.

4. Reevaluate Medication:

   • Discuss the ineffectiveness of benzodiazepines with your doctor. They may consider other medications specifically designed for sleep disturbances or recommend behavioral interventions.

5. Further Evaluation:

   • Request a referral to a sleep specialist who may suggest further testing or alternative treatments, including cognitive-behavioral therapy for insomnia (CBT-I), which can be effective for addressing sleep issues more holistically.

Please prioritize your safety and take care of yourself as you seek further solutions. If you have any more questions or need additional guidance, feel free to ask.