Struggling to Find Help for My Sleep Disorder Causing Injuries
At 46 years old, I am a female, a non-smoker, standing 5'8" tall and weighing 200 pounds. I have been diagnosed with POTS and mitochondrial disease. Several years back, I began to experience significant sleep disturbances. Following a sleep study, I was diagnosed with obstructive sleep apnea. Despite trying various treatments, including a bipap machine over the years, my sleep issues persisted, prompting me to consult another specialist. This doctor suggested that my condition had a more central origin rather than being solely obstructive; hence, the cpap therapy was ineffective. This led to the placement of a phrenic nerve stimulator, which did improve my sleep apnea symptoms. Amid all this, I developed a peculiar sleep behavior where I would find myself sitting up in bed, often leaning over and falling out. Over the last few years, this behavior has intensified. Back when I was still in my bedroom, I would wake up with my feet touching the floor while leaning against the bed. Now, I sleep on a mattress directly on the floor and frequently wake up several feet away from my bed, completely unaware of how I ended up there. My sleep studies showed no occurrence of this behavior, and attempts to treat it with benzodiazepines, gradually increasing the dosage, have proven ineffective. Despite consultations with medical professionals, the reasons behind my actions during sleep remain unclear. The situation has worsened to the point where I often wake up with bruises and burns from my movements across the carpet. I'm feeling utterly frustrated and desperate for answers since I have yet to find any solutions.
Answers (1)
7/16/2025, 9:20:49 PM
OpenHealth AI
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:
- 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.
- Addressing safety in your sleeping environment is crucial to prevent injuries.
- 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:
-
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.
-
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.
-
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.
-
Reevaluate Medication:
- Discuss the ineffectiveness of benzodiazepines with your doctor. They may consider other medications specifically designed for sleep disturbances or recommend behavioral interventions.
-
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.
Related Questions
Experiencing Clear Fluid from Ear with No Discomfort: Should I Wait for My Appointment?
I am a healthy 57-year-old female, weighing 120 pounds and standing 5 feet 5 inches tall. My daily medications include 100 mg of Losartan for effectively managed high blood pressure, 200 mg of Lyrica taken twice daily for post-herpetic neuralgia, 100 mg of Synthroid following treatment for thyroid cancer, and a combination hormone replacement therapy patch. Additionally, I take Zyrtec and Flonase every day to combat allergies. Since October, I have been dealing with persistent tinnitus in my right ear, accompanied by some pressure and a muffled sensation. Recently, I've noticed that when I speak, it feels akin to the sensation I experience when my ears clear during a flight after chewing gum—my voice sounds amplified in my head. I've scheduled an appointment with a physician's assistant in an ear, nose, and throat (ENT) office for the end of March due to my worries about the tinnitus and any potential hearing impairment. Yesterday, I noticed that my ear emitted a clear fluid. Thankfully, there was no associated pain. The fluid was somewhat thicker than water, completely odorless—unlike the unpleasant discharge I recall from my daughter's ear infections—and there was no sign of blood. Could this indicate a perforated eardrum? I suspect this might be the case, but can this occur without an underlying infection? Should I seek attention sooner than my appointment in March? I would prefer to avoid urgent care during flu season; however, if this situation is serious, I am prepared to take precautions and visit.
Understanding the Increased Pain in My Foot While Reclining
At 30 years old, I am nearing the five-week mark since undergoing surgery on my metatarsals. I've encountered a troubling issue: I can’t seem to find comfort when lying down, whether it’s with my foot raised or lying flat. My pain level escalates to a severe 10 out of 10, unless my foot is making contact with the floor or I dangle my leg off the side of the bed so that my toes touch the ground. Is this situation typical for someone in my circumstances? Are there any suggestions that might assist me in getting a better night's sleep?
Assessing My Health Concerns: How Anxious Should I Be?
I’m a 32-year-old woman, weighing 124 pounds and standing at 5 feet 6 inches tall. For over a year, I have been experiencing bright red rectal bleeding. Initially, I attributed this issue to hemorrhoids that developed during my pregnancy two years ago. The bleeding occurs with most of my bowel movements, sometimes happens without one, and on a few occasions, has been enough to stain the toilet bowl significantly. The color of the blood is typically darker than what I observe during a hemorrhoid flare-up. There is a notable family history of bowel cancer on both sides; one family member was diagnosed at age 45, and another at 60. In the past six months, I have encountered several episodes of severe abdominal pain—3 to 4 instances—intense enough to consider a trip to the emergency room. However, the pain usually subsides within about an hour. It’s unusual for me to experience such acute pain, given my high tolerance for discomfort; for example, I once played rugby shortly after dislocating and fracturing my finger. Recently, I mustered the courage to consult with my doctor, who recommended a FIT test, which returned a positive result (30.1). Additionally, I underwent a complete blood test, and aside from having low ferritin levels (7 µg/L), all other results were normal. I have since been referred for a colonoscopy on a two-week waiting list to rule out any possible bowel cancer. Given these circumstances, how concerned should I be? Thank you for your input.
Persistent Pain in Right Shoulder and Arm After Lifting
Hello, everyone! I’m a 23-year-old male and have been engaged in weightlifting for several years now. Recently, I’ve been struggling with ongoing discomfort in my right shoulder and arm, which I haven’t been able to accurately identify. The pain manifests during particular movements, especially with lateral raises or when my arm is raised to shoulder level while rotating my wrist. Certain pressing and pulling activities can also provoke this discomfort. Rather than feeling sharp, it’s a deep, nagging sensation that sometimes seems localized in the front area of the shoulder or at the biceps tendon, and at other times it feels more like it’s situated between the shoulder and upper arm. Fortunately, there’s no numbness or tingling involved. This issue began while I was working out. I decided to take a break for around two months, but when I returned, the pain persisted. After consulting a physician, I was diagnosed with bicipital tendinitis. Since then, I’ve reduced my upper-body workouts, completely steering clear of shoulder exercises and heavy lifting, and have begun a gentle rehabilitation regimen focusing on external rotations, pendulum movements, and scapular exercises. Despite adhering to this routine for about a week, I haven’t experienced any noticeable improvement. Is it typical for this type of tendon injury to require an extended period for recovery? At what point should I consider diagnostic imaging, such as an ultrasound or MRI? Additionally, are there frequent rehabilitation errors that might impede the healing process? I appreciate your insights in advance!
Understanding EEG Results for My 22-Month-Old Son: Insights Needed
Could someone help clarify this for me? My son, who is just 22 months old, hasn’t started walking yet, becomes tired easily, and has been experiencing behavioral outbursts. He had a febrile seizure in February 2025, followed by another unexplained seizure in April 2025, which led us to consult a neurologist. Since he was 3 months old, he has been receiving therapy from a physical therapist for torticollis. At birth, he spent five days in the NICU due to issues with meconium aspiration. A recent MRI showed normal results, and he also had a follow-up EEG after one conducted in July 2025. The results from this recent EEG were abnormal for a pediatric patient in awake, drowsy, and sleeping states. Notably, there were brief episodes of left frontotemporal delta slowing, which occurred mainly when he was awake and drowsy. There were no signs of epileptiform activity detected. In contrast, the EEG performed back on July 3, 2025, was deemed normal for both awake and drowsy states, again with no evidence of epileptiform irregularities, although it did not capture any sleep data. This examination was prompted by the child's existing history of febrile seizures. Importantly, he is not currently on any anti-seizure medications. The EEG procedure used standard electrode placements per the 10-20 system, conducted a single-lead EKG, and included continuous video monitoring. During the analysis, the background activity was symmetric, indicating some anterior-posterior (AP) organization, with a dominant rhythm of 50-80 microvolts at 7 Hz. His drowsy state was marked by a reduced amount of eye blink activity, less breathing motion interference, and a generalized slowing in theta/delta frequencies. Stage II sleep exhibited spindles and vertex waves patterns. Additionally, there were intermittent bursts of 250-300 microvolts in the left frontotemporal region with semi-rhythmic activity of 2-4 Hz, mostly observed during wakefulness and drowsiness. No definitive epileptiform discharge was noted. Photic stimulation during the test did not elicit a strong response, and hyperventilation was not conducted during this session.