Chronic Hypersomnia Since Adolescence: A Seeking Path for Answers
I am a 30-year-old white male, standing 5 feet 11 inches tall and weighing 160 pounds, residing in the United States. **Current Medications:** - Adderall XR 40 mg - Sunosi 150 mg - Lisinopril 40 mg - Atenolol 25 mg - Tolvaptan 60 mg **Medical Background:** - Autosomal Dominant Polycystic Kidney Disease (ADPKD) at stage 2 (eGFR 67) - Obstructive Sleep Apnea (utilizing CPAP machine since July 2024) - Complex Post-Traumatic Stress Disorder (CPTSD) **Symptoms Experienced:** - Persistent and overwhelming sleepiness—more than just fatigue—accompanied by a heavy feeling in my face and chest; I struggle to keep my eyes open and often feel as if I am burdened. - I sleep for 10 to 14 hours every night, supplemented by involuntary naps lasting 1 to 2 hours multiple times throughout the day. - None of my sleep feels restorative, leading to a groggy, hangover-like state upon waking. - Cognitive challenges including a lack of focus, forgetfulness, and trouble retrieving words, which have grown more pronounced over the last four years. - Activities as simple as showering or cooking now feel like moving through molasses. - I experience low physical endurance and lengthy recovery times, even though I previously maintained a regular exercise routine. My late father exhibited similar symptoms with the addition of seizures he associated with alcoholism, although he was never assessed medically. I, on the other hand, do not have any alcohol or addiction issues. **Specialist Consultations:** - **Sleep Specialist:** A Multiple Sleep Latency Test (MSLT) ruled out narcolepsy with no Sleep Onset REM Periods (SOREMs) and a 12-minute latency. I comply with CPAP therapy for an average of eight hours each night, but there has been no alleviation of my symptoms. Testing revealed no periodic limb movement disorders, alpha-delta intrusions, or unexplained nighttime arousals. - **Nephrologist:** Symptoms are considered unlikely to stem from my current stage of ADPKD. Tests show I’m not anemic, with standard iron levels. - **Rheumatologist:** An ANA titer of 1:320 with a speckled and nucleolar pattern appears elevated; however, all specific autoimmune tests returned negative. Monitoring was suggested without a clear diagnosis provided. - **Psychiatrist:** It was determined that my symptoms do not seem to be connected to mental health issues. My therapist has also validated in a letter that my condition is unrelated to psychological factors. - **Miscellaneous Findings:** An arachnoid cyst was detected in my brain. My white blood cell count is borderline low and my red blood cell count alternates between normal and low realms. Testosterone levels are within the normal range, though morning cortisol is slightly elevated. Normetanephrine is elevated at 2.15 nmol/L, while metanephrine remains normal at 0.27 nmol/L. Both Vitamin D and B12 levels are adequate. Tests for STIs returned negative results. **Current Situation:** I am currently on disability, unable to work even in part-time capacities and can no longer engage in exercise, finding myself nearly confined to my home. I feel as though I am being sent from one specialist to another without gaining clarity on my condition. What avenues should I explore next? Which type of medical professional might offer further insight? I'm beginning to doubt my own experiences, pondering if I am merely being lazy or overly sensitive.
Answers (1)
2/7/2026, 6:20:38 AM
OpenHealth AI
I'm really sorry to hear about the persistent struggles you're facing with chronic hypersomnia and related challenges. It sounds incredibly frustrating to feel such overwhelming sleepiness and cognitive difficulties without clear answers. Let's break this down and explore some next steps that might help you gain further insights into your condition.
Main Points
- Potential Causes of Your Symptoms: Chronic hypersomnia can be multifactorial, with possible contributions from neurological, metabolic, or environmental factors.
- Next Steps: Focus on exploring comprehensive evaluations beyond those you've had and consider interdisciplinary approaches to manage your symptoms effectively.
Explanation
Given your reported symptoms and extensive medical background, it’s crucial to explore a few key areas:
- Sleep Quality: While you are using a CPAP machine, you mentioned that your sleep doesn’t feel restorative. Without proper restorative sleep, even healthy people can experience cognitive and physical fatigue.
- Neurological Assessment: The presence of an arachnoid cyst warrants consideration. While many people live without symptoms, its potential impacts on surrounding tissues shouldn’t be dismissed.
- Endocrine Factors: Your slightly elevated morning cortisol and the elevated normetanephrine could indicate underlying issues related to adrenal function or other metabolic conditions.
- Autoimmune Considerations: Although your autoimmune tests were negative and flagged only mild elevation in ANA, persisting symptoms warrant monitoring, as autoimmune profiles can change over time.
Specific, Prioritized Next Steps
-
Comprehensive Neurological Evaluation: Seek a second opinion from a neurologist specializing in sleep disorders or neuropsychiatry. They might look further into the arachnoid cyst and its implications, potentially recommending an MRI to monitor changes over time.
-
Endocrinologist Consultation: Given the hormonal irregularities indicated by your elevated cortisol and normetanephrine, consulting with an endocrinologist may help clarify any underlying conditions like Cushing’s syndrome or other adrenal disorders.
-
Behavioral and Environmental Adjustments:
- Sleep Hygiene: Continue using your CPAP and consider implementing a strict sleep schedule; going to bed and waking up at the same time every day may help regulate your sleep pattern.
- Diet and Hydration: Ensure proper hydration and a balanced diet to support overall health. Sometimes, nutrition can play a big role in energy levels and endurance.
- Cognitive Behavioral Therapy: While your symptoms don't seem psychological per se, cognitive-behavioral approaches can help manage fatigue and enhance coping strategies.
-
Lifestyle Adjustments: Incorporate gentle activities like stretches or short walks to help improve stamina without overwhelming yourself; listen to your body and adapt based on your energy levels.
-
Symptom Journal: Keep a daily log of your symptoms, sleep quality, dietary intake, and any lifestyle modifications. This may provide insights for future discussions with healthcare providers.
I want to reassure you that your experiences and concerns are valid, and it’s important to continue advocating for your health. It’s not about being lazy; rather, it's about finding the right answers that suit your unique situation. If you remain unsatisfied with the path forward, don’t hesitate to seek further professional opinions. Please let me know if you need more specific information or assistance in any of these areas.
Related Questions
Experiencing Unusual Sensitivity to Paracetamol
Hello, Reddit community! I'm a newcomer here, so please bear with me as I navigate this platform as well as the rules. I appreciate your understanding regarding my writing skills. I find myself in a situation that lacks sufficient information online, and I'm reaching out for insights from others. Currently, I have reasons to believe that I might be experiencing a unique sensitivity to paracetamol, and I’d like to share my timeline regarding this matter. Throughout my life, I generally had no issues with paracetamol. I used various brands multiple times and felt fine. However, starting in the fourth grade, I began to experience difficulties with it. My initial problems were respiratory-related, but soon they also affected my gastrointestinal system. I haven't had any formal testing yet, but I can safely use other pain relievers like NSAIDs without any adverse effects. Initially, I tolerated paracetamol relatively well; my early symptoms seemed like common side effects. Unfortunately, it escalated to severe reactions, including vomiting, tightening of the throat, blood in my mucus, and shortness of breath. In my confusion, I thought limiting my dosage could help, which it did temporarily, but eventually even the reduced amounts failed to be effective. I experimented with syrup formulations that contain less paracetamol or where it isn't the primary ingredient, and found those to be more manageable. Recently, however, even those have become problematic, making it necessary for me to seek alternatives to paracetamol, as it has become increasingly intolerable. Through my research, I discovered that such reactions often stem from cross-sensitivity to other medications or from preexisting respiratory conditions. I lack a history of asthma or other respiratory issues, so I’m inclined to dismiss that possibility, although I remain uncertain. Moreover, I have no known allergies, which adds to my confusion since my reactions only occur with this one particular medication while all others seem fine. It is difficult for me to process this change, especially since I used to have no issues with paracetamol. It is widely available and generally considered safe, so I struggle to understand the source of my suffering. Many people insist that these reactions are normal side effects, leading me to question whether I am overreacting. The immediacy of my reactions intensifies my concern; I don’t even need to swallow the medication completely before I notice my throat constricting, increased mucus production, and shortly thereafter, some blood in my mucus along with persistent coughing. This pattern has become consistent, whereas it used to depend on the dosage. Now, regardless of how much I take, the same symptoms occur. I’ve tried to dismiss it, not wanting to worry my parents or seek medical attention for a dosage safety test, fearing I’ve already pushed my body too much. However, I am considering discussing my concerns with my mother since she is increasingly worried about my use of this medication. I’m not seeking a diagnosis or medical advice—I understand I should probably consult a professional. I’m just interested in knowing if anyone else has faced similar experiences, as the confusion grows. What I once assumed were normal side effects now seem to signify something more concerning.
Chronic Foot Pain: Seeking Insights on Possible Causes
I'm reaching out to gather thoughts on a perplexing issue I'm facing. Since my first pregnancy back in 2020, I've been dealing with intense foot pain that appears unpredictably. It all started when I was about seven months along while working long shifts in a busy kitchen, four days a week, for eight hours each day. At the time, I dismissed the discomfort as something typical for pregnancy, but it fortunately subsided about six months after giving birth to my first child. Fast forward to late 2024, when I became pregnant with my second child. By now, I had transitioned to being a stay-at-home mother, with none of the rigorous demands of my previous job. However, around three months into this new pregnancy, the foot pain reemerged and has persisted ever since. My youngest is turning two this month, which helps frame this timeline. The pain has oscillated between being severe and manageable, but the previous six months have marked a significant decline into debilitating territory. When I am at rest, I feel sharp pains in my metatarsals that radiate up to my knees. To alleviate some discomfort, I’ve been altering my walking style to shift weight more onto my heels instead of the balls of my feet. However, this adjustment has introduced a new level of discomfort in my heels. Ironically, the only relief I find is while walking. Nonetheless, excessive walking—even something as simple as taking my oldest to school for a brief ten-minute journey—leaves me nearly immobilized the following day. Currently, I’m on a regimen of 50 mg of APO-Diclofenac DR, taken twice daily, yet I’ve found no relief. Previously, I also tried 500 mg of naproxen twice a day without any positive outcomes. I've experimented with various footwear, but none have alleviated the pain. My primary care physician has arranged for bilateral x-rays and blood tests to check for conditions like gout and markers for osteoarthritis and rheumatoid arthritis, among other things. So far, all tests have returned normal. There have been occasions where I’ve had to keep my oldest child at home from school simply because I’m unable to walk even a short distance, such as the fifty steps from my bedroom to the kitchen. Standing causes distress, and even elevating my feet while resting feels unbearable. Additionally, any gentle touch to my feet triggers intense pain that shoots up my shins. The only feedback I’ve received from my doctor so far is that it likely stems from inflammation, along with a recommendation to expedite weight loss. I had a chiropractor assess my condition, and they noted that I am hypermobile, but I’m unsure how significant that could be to my situation. If you have any questions for clarification, I’d be more than willing to respond. I’m enduring considerable pain and would greatly appreciate any suggestions on possible avenues for finding relief.
Managing Pain with Lidocaine Patches and Heating Pads
Hello everyone! I need to share something quite personal: I have been diagnosed with cancer. I realize that’s a heavy way to start, but it’s important context. Currently, I am using a lidocaine patch as a method for pain relief. However, I’ve found that my heating pad provides more comfort than the patch does. Is it advisable to remove the patch and switch to the heating pad instead? Should I clean my back prior to using the pad, even though it’s not a day I usually shower? Also, once I take off the patch, how long should I wait before applying the heating pad again? I appreciate any advice you have! For reference, I’m approximately 5 feet 5 inches tall and weigh around 250 pounds.
Sudden Stabbing Throat Pain
As a 19-year-old female, I find myself dealing with a sudden, intense pain localized on the right side of my throat, adjacent to my windpipe and beneath my chin. These episodes are unpredictable; they strike without warning, persist for just a fleeting moment, and then vanish completely. This situation is genuinely concerning for me. I'm at a loss for how to alleviate this discomfort. Has anyone encountered a similar issue or have any insight into what could be causing this?
Discomfort in the Left Temple and Forehead
I’m a 25-year-old female who does not regularly use medication. I occasionally drink and smoke. For the past three days, I’ve been experiencing intermittent pain localized to the left side of my head, particularly in the temple and the frontal region. The discomfort isn’t constant; it appears and disappears rather than lasting throughout the day. Given the symptoms, I initially suspected it might be a migraine, though I remain uncertain about the diagnosis.