Seeking Support for an Invisible Medical Condition
Greetings everyone, I hope this message finds you well. I find myself in a challenging situation and I'm reaching out in hopes that someone might provide some insights regarding a medical condition that has remained largely hidden. I’m 27 and assigned female at birth, currently residing in Nottingham, UK, and I would be incredibly grateful for any assistance. Here's a brief overview of my health issue: Back in 2014, I experienced a severe physical assault that left several injuries to my facial area, including my forehead. As a result of this trauma, I developed an intolerance to the scents of cigarette and cannabis smoke, which I did not react to prior to the incident. This sensitivity has persisted, and it significantly impacts my daily life as I struggle to tolerate these smells, even years later. I recently underwent an MRI scan on July 28, 2025, as I continue to pursue a diagnosis that could explain my ongoing difficulty. The potential causes being considered include hyperosmia, phantosmia, a benign tumor, vitamin D deficiency, or some other unidentified medical issue. Additionally, I'm eager to learn if there might be a treatment available that could alleviate my nasal sensitivities. As of now, I have not received my MRI results. I followed up with the hospital more than two weeks ago, and they informed me that a letter would be sent out soon to schedule an appointment to discuss the findings. For context, here’s a summary of my medical background: **Diagnosis Timeline:** - Autism: February 26, 2009 - Depression: August 3, 2012 - Asperger’s Syndrome: August 3, 2012 - Seborrheic Dermatitis: August 9, 2019 - ADHD: August 24, 2023 - ADHD Combined Type Diagnosis: October 12, 2023 **Surgical History:** - Bilateral Salpingo-Oophorectomy: July 25, 2022 - Total Laparoscopic Hysterectomy: July 25, 2022 **Current Medications:** - I receive a 2ml Nebido injection every three months, which I will continue indefinitely. **Medication History Overview:** I have been on testosterone therapy since I was 16 years old, initially using Sustanon injections for a year before switching to Nebido. Throughout this time, I have also taken Decapeptyl or Gonapeptyl to manage menstrual cycles. **Previous Medications:** - Fluoxetine and Sertraline I began taking antidepressants at the age of 14, starting with Fluoxetine before being transitioned to Sertraline at a high dosage. I do not recall the precise timeline for these medications but remember discontinuing them when I turned 20. I appreciate your patience with this extensive post. Thank you for taking the time to read my story, and any insights or guidance would be immensely valued! Warm regards!
Answers (1)
9/7/2025, 3:01:36 AM
OpenHealth AI
Thank you for sharing your story. It sounds like you're dealing with a very challenging situation concerning your sensitivity to certain scents following a traumatic event. Here’s a clear summary and what you can consider doing while you await your MRI results.
Main Points:
- Sensitivities: You’re experiencing a lasting intolerance to specific smells, which can be linked to various conditions.
- Potential Causes: Ongoing assessment of hyperosmia, phantosmia, or other medical issues is essential.
- Awaiting Results: It’s understandable to feel anxious about the waiting period after your MRI.
Explanation:
Your sensitivity to smells could possibly stem from a change in how your brain processes sensory information due to trauma or a related neurological issue. While conditions like hyperosmia (increased sensitivity to odors) or phantosmia (smelling odors that aren’t present) could play a role, maintaining an open dialogue with your healthcare professionals as you await test results is key.
Next Steps:
-
Manage Environmental Triggers:
- Avoidance: Since specific odors are triggers for you, try to avoid areas where you may encounter cigarette or cannabis smoke. If possible, discuss your sensitivities with people in your life to minimize exposure.
- Air Quality: Consider using air purifiers at home and keeping windows open for ventilation to reduce lingering scents.
-
Monitor Your Symptoms:
- Keep a diary of when you experience heightened sensitivities, including any associated symptoms (headaches, mood changes, etc.). This can provide useful information for your healthcare provider.
-
Stay Informed and Patient:
- Continue to follow up with the hospital about your MRI results. If you don’t hear back within a few days, consider reaching out again.
-
Healthy Lifestyle:
- Incorporate nutrient-rich foods into your diet, especially those rich in vitamin D, as deficiency can sometimes relate to sensory issues.
-
Seek Support:
- Connecting with support groups for individuals who face similar challenges may help you find community and understanding.
Please remember to take care of your emotional well-being during this period. It’s normal to feel frustrated or worried about health conditions, especially when they aren’t fully explained yet. If you need additional help with managing anxiety related to these issues, techniques such as mindfulness, relaxation exercises, or reaching out to friends or professionals for support can be beneficial.
Let me know if you have any further questions or need additional guidance!
Related Questions
Navigating the Complexity of Symptoms: Is It PCOS or Something Else?
While I’m not an expert in self-diagnosis, I find myself puzzled by an array of symptoms that overlap, making it challenging to pinpoint what might be affecting my health. Let's break down my situation: - Age: 25 years, Gender: Female, Height: 5’1”, Weight: 125 lbs. - The last menstruation occurred in June 2024. Prior to this, my menstrual cycle was remarkably consistent since I was around 12 years old, typically without severe premenstrual symptoms, heavy flow, or irregularities. - Various blood tests over time reveal that most hormone levels fall within normal ranges, with the exception of estradiol (persistently between 10-20) and progesterone (remaining below 0.2). - A couple of results raised some concerns for me personally, even if my doctors weren’t alarmed: my morning cortisol was measured at 13.4 and in the afternoon at 9.49. One test indicated a TSH level of 2.35, which increased to 3.93 months later. My fasting glucose consistently hovers around 80, whereas random glucose levels were recorded at 68, and postprandial glucose was 65. - An MRI indicated a "deviation of the pituitary stalk, potentially linked to a small pituitary adenoma." - An ultrasound revealed "multiple oval, well-defined, anechoic images with posterior acoustic enhancement, measuring a few millimeters, located around the edges of the stroma." - The symptoms I am experiencing include disrupted sleep (frequent awakenings, particularly around 3 AM, making it hard to resume sleep), lack of energy, difficulty in weight management, persistent hunger, heightened anxiety, and hair thinning. - Birth control (drospirenone and ethinyl estradiol) exacerbated nearly all of my symptoms, leading me to discontinue use after two weeks despite experiencing a withdrawal bleed. - My lifestyle is generally healthy; I consume a lot of whole foods, engage in weightlifting, and run regularly. Given that I’ve received a diagnosis of PCOS, I’m wondering if this assessment seems accurate. What options do I have moving forward, especially since the contraceptive method didn’t provide relief and I appear to exhibit signs of additional complications such as thyroid issues or cortisol dysregulation?
Understanding My Experience with Overdose-Related Symptoms and Behavior
25 years old, 165 cm tall, and weighing 70 kg. Summary: After sharing a complaint about my interactions with paramedics, I've taken a moment to reflect on their feedback and review the situation through the footage. I recognize that my conduct during those moments was inappropriate, and I am filled with remorse. Subsequently, I have retracted my complaint and am now seeking mental health support. I desire to clarify certain aspects since my medical records do not completely align with what I went through. Below, I detail my symptoms. Yesterday, I made a post on the AskDoctors forum, hoping for insights regarding my condition. The advice I received prompted a self-realization that had evaded me until now. Initially, I was outlining a grievance against paramedics who doubted the legitimacy of my seizures and accused me of feigning the experience. My response was not only disproportionate but also hostile—I yelled, wept, and labeled them as heartless. Such reactions were completely unwarranted and unjustifiable. Ultimately, I was physically stable, with vital signs indicating no critical issues; there were only temporary fluctuations in my blood work, which shouldn’t have raised alarms. I feel profound regret over my conduct during that encounter. Watching the footage incites feelings of self-disgust. I’ve decided to withdraw my complaints and am committed to mental health resources. I opted to delete my previous post since it contained sensitive information about my professional and educational background; I was worried it might provoke disciplinary action from my university, which I cherish as my career gives my life meaning. I admit to feeling cowardly in this respect. The initial reason for my inquiry was a desperate need for clarity about the symptoms I experienced, as my discharge documentation omits much of what transpired in the hospital and the subsequent three days. I greatly value the input I’ve received and hope to gather more perspectives. I fully acknowledge my wrongdoings and find my previous behavior abhorrent. I understand how challenging it is for emergency personnel to fulfill their duties when faced with such a situation. I’ve discussed with family and friends the importance of exercising discretion when contacting emergency services and ensuring it’s truly necessary. I regret taking up valuable resources that could have been reserved for individuals in genuine need of urgent care. My actions were shameful, not just for me but also for my colleagues who work in emergency services; I genuinely believe the clinicians should have distanced themselves from my case entirely. I've canceled my appointment with the neurologist, but I would genuinely appreciate insights from others on this subject. Could excessive doses of sertraline, propranolol, promethazine, and alcohol induce psychological seizures? Is it possible for these seizures to recur? Were my hallucinations indicative of some kind of psychosis? During the episodes, I saw hair-like formations everywhere and everything seemed to emit a blue glow. In the hospital, I consistently perceived doctors passing by. At home, the LED lights appeared to move, and I often caught glimpses of faces in my peripheral vision. There were also auditory experiences, such as hearing things that weren’t present, as confirmed by my friend. Initially at home, I was unaware I was having seizures, although I did hear police officers numbering them and acknowledging them as such. I had three episodes where I was placed in the recovery position. In my medical notes, I mentioned experiencing ten seizures throughout the night, though I can’t verify this. I was seemingly in a continuous cycle of them. I recall at least once drooling uncontrollably and my hands looked peculiar; on one occasion, I screamed when I regained consciousness due to an awkward hand position. I also experienced significant neck pain and discomfort in my feet. I know I fell twice while hospitalized; fortunately, my mother was there to catch me each time, so I avoided serious injury. I was never alone in the facility. Everything seemed to settle down after approximately three days, right around my third visit. I recall a persistent ache at the nape of my neck that left me feeling drowsy, often drifting in and out of consciousness and repeatedly asking for the time. It was a never-ending ordeal, and although I had little appetite, I did not vomit at all. Reflecting on this whole episode leaves me feeling as if it were entirely fabricated. I struggle to articulate it. Conversations about care options unfolded around me, yet I grasped little of what was being discussed. I often replied with “yes” or sought validation from my mother. I remember thinking it was remarkable that my mum had glasses with water in them; I even imagined one of my cats perched on my aunt’s shoulder. Overall, it felt akin to a terrifying drug experience. I do have videos capturing my behavior at home, though I cannot recall anything from the hospital. I often awakened with either my mother, aunt, or medical staff restraining me. Could it all stem from psychological causes? Is it possible that the medications led to a psychotic episode where I convinced myself I was experiencing seizures and on the brink of death? After they subsided, I felt like an automaton for weeks, plagued by involuntary muscle jerks—primarily in my legs and neck. I sincerely hope these symptoms do not return. I intend to avoid emergency care unless it’s absolutely necessary. I seek nothing more than to comprehend what transpired. Thank you for your thoughts.
Understanding Recurrent Symptoms: Are They Histamine-Related?
Hello, health professionals, I am seeking your expertise regarding a variety of symptoms I have been experiencing intermittently over the years. While they appear linked, I'm having difficulty pinpointing their root cause. **Personal Summary:** - 27 years old, Female - Non-smoker (formerly vaped for about eight years, cessation initiated two years ago) - No diagnosed autoimmune conditions - Background of anxiety (which might exacerbate some symptoms, though it doesn't account for all) - Currently taking Flonase and a multivitamin **Skin Reactions:** - I've dealt with recurring itchy rashes and hive-like bumps since childhood. They manifest suddenly and usually resolve without intervention. - These rashes are often itchy, can be raised, and tend to appear sporadically without identifiable triggers. - Antihistamines provide consistent relief, leading me to suspect a role of histamines in these eruptions. - These episodes do not align with typical contact allergies or classic food allergies. - They can happen multiple times daily, and I've often dismissed them as merely anxiety-related rashes. - Sometimes the itching precedes the visible rash, while other instances present with a red, inflamed area that stirs inquiries about my well-being from others. **Foot Discomfort:** - Over the last few years, I’ve encountered severe itching on the soles of my feet. - These episodes typically include small pale or white spots with redness surrounding them, occasionally featuring a red center. - Itching intensity can be overwhelming, yet these lesions usually arise suddenly, - They frequently improve upon avoiding scratching and may resolve within a range of 30 minutes to two days. - The first episode was triggered after swimming in a freshwater lake, though I’ve also experienced it while wearing specific footwear like Crocs or boots, but not consistently. - Certain events coincide with my typical skin rash, hinting at a potential systemic condition rather than merely a localized issue. - The symptoms do not mirror those of warts, ringworm, or fungal infections. **Ear and Sinus Issues:** - Itchy ears have been a recurring issue for the past few years; I initially attributed it to overly aggressive cleaning with cotton swabs, which I realize is harmful. - I have a history of chronic sinus problems, including post-nasal drip and regular ear infections. - The inflammation appears to flare up sporadically rather than constantly. - Recently, I experienced a painful ear issue that began with what I thought was a pimple. The next day, my ear was swollen. After visiting a clinic, I was diagnosed with a double ear and sinus infection, treated with antibiotics. My pain persisted, leading to a follow-up with my primary care physician, who prescribed Flonase and noted ongoing nasal inflammation. Missing doses led to increased ear discomfort, prompting me to take Flonase more regularly. Unfortunately, a recent flare of swelling and discomfort in my ear led me to consider consulting an ENT specialist. **Gastrointestinal Symptoms:** - I was diagnosed with gastritis through an upper endoscopy procedure. - Testing for H. pylori returned negative. - I've since developed food sensitivities and gastrointestinal discomfort not previously experienced. - I saw significant improvement after removing gluten and dairy from my diet, with tests for celiac disease yielding negative results. - Symptoms tend to flare up in response to stress or specific food intake rather than being a constant presence. **Additional Context:** - A history of childhood asthma (now occurs infrequently) - Sensitivity to heat - Past instances of feeling lightheaded, resembling vasovagal symptoms, alongside vertigo - Symptoms across various systems often flare together, but not in every instance - While my anxiety can intensify symptoms, both antihistamines and diet modifications have had notable positive effects **My Inquiry:** While I don’t wish to self-diagnose, I'm curious if my range of symptoms might suggest: - Histamine intolerance - Mast-cell overactivity (not necessarily MCAS, but an increased reaction) - Physical or contact urticaria I'm primarily seeking: - Recommendations for a suitable specialist - Insight on whether this symptom pattern fits a recognized mechanism - A clearer understanding of what warning signs to be concerned about **Summary:** I contend with a long-standing pattern of episodic itchy rashes and hives, significant but transient foot itching along with bumps, persistent ear irritation coupled with sinus problems, and gastritis accompanied by food sensitivities that improved on an elimination diet. Antihistamines aid multiple symptoms. Could this suggest underlying histamine-related issues manifesting across multiple systems rather than in isolation?
Seeking Guidance on Persistent Chest Discomfort After Extensive Testing
I'm a 43-year-old male, standing at 5'11" and weighing 180 pounds. My journey began around March to April of 2025 when, despite regularly hitting the gym four times a week, I was struck by severe chest pain along with frequent belching and a tight feeling in my diaphragm. At times, the pain became so intense that I feared it might be a heart attack. **Medical History:** In May 2019, I received a diagnosis of **PVS** and have since been under the care of a cardiac electrophysiologist. Upon experiencing these new symptoms, I consulted my EP, who conducted an EKG right then and set me up with a 7-day heart monitor. The results showed no irregularities. Subsequently, I was directed to a cardiologist, who carried out both a **stress test** and an **echocardiogram**, both of which yielded normal findings. Afterward, I returned to my primary care physician, who speculated that my gallbladder might be involved. An **ultrasound** was performed but revealed no issues. I then requested a **chest X-ray**, which also came back normal. My PCP then considered the possibility of a **hiatal hernia** and referred me to a gastroenterologist; unfortunately, that appointment took almost **five months** to materialize. In the meantime, my symptoms persisted, prompting me to cease weightlifting and switch my focus to **cardio and running**. Surprisingly, these activities didn’t exacerbate my symptoms, though the chest pain remained constant. When I finally saw the gastroenterologist, they suggested an **upper endoscopy**, which took another roughly three months to arrange. During this procedure, I was diagnosed with **Eosinophilic Esophagitis (EOE)**, a condition I had not previously experienced. The doctors also placed a pH monitoring device for acid reflux assessment, which indicated **no unusual acid exposure**. Following this, I began a treatment plan that included a swallowed steroid inhaler and an increased dosage of **omeprazole**. Sixty days later, I underwent another endoscopy, which showed that the EOE had largely resolved, with minimal residual symptoms. Unfortunately, my chest discomfort persisted without any improvement. It has now been about **a year** since these issues emerged, and I still have not found substantial relief. A recent chest MRI completed at a dedicated imaging center revealed no abnormalities. I entertained the idea of **costochondritis**, but again, the MRI did not support that hypothesis. The only minor relief I find comes from consciously pulling my shoulders back and expanding my chest. I continue to experience discomfort around my **diaphragm** and tenderness in the area of the **xiphoid process**. My PCP prescribed a steroid pack, which was somewhat beneficial for the pain but failed to alleviate the pressure or constant discomfort. At this juncture, I feel quite lost and uncertain about my next steps. I would greatly appreciate any insights or experiences from others who have faced similar issues. Additionally, if there are any physicians here willing to offer advice, I am open to traveling to find the answers or relief I'm desperately seeking.
Understanding the Reality of End-Stage Pancreatic Cancer
Navigating the complexities of end-stage pancreatic cancer can be overwhelming, and I'm seeking clarity on what lies ahead. My mother, who is 59 years old and weighs about 115 pounds, received her diagnosis of terminal pancreatic cancer in October 2025. Unfortunately, she has largely rejected the option of chemotherapy and is consuming her pain relief medications—specifically oxycodone and morphine—at an alarming rate. While I’m not worried about the dosage, the severity of her pain has reached a level that is becoming unbearable. Despite this, she is adamant about avoiding any hospital treatment, even though that's where she would receive the most effective pain management. I’ve attempted multiple times to get her medical attention, calling both hospitals and emergency services. However, due to her refusal for assistance, they have also turned us down. It was explained to me that taking her against her will could be considered kidnapping. After consulting with various healthcare professionals, I have been informed that her time may be measured in days or weeks. There’s also a chance that she could slip into unconsciousness, leaving me deeply unsettled. I am already in a state of mourning, yet I am desperate to understand what to expect in the coming days. It is crucial for me to prepare myself—emotionally and mentally—so that I can help ensure her comfort in these final moments. Plans are underway to engage hospice care, but the uncertainty fills me with apprehension. This is my mother, and I want to alleviate my fear so I can provide her with the support she needs as she nears the end of her journey. I yearn to be present for her without being entirely consumed by grief before she passes away. Any guidance or insight you could provide would be invaluable. I'm at a loss for what steps to take next and truly desire to navigate this situation with as much grace and readiness as possible.