Navigating a Medical Maze: My Journey
I am a 16-year-old girl living with an intricate web of health concerns. I've been diagnosed with level 2 autism and ADHD, alongside anxiety and depression. My current medication regimen includes Concerta at a dosage of 36mg, Sertraline at 200mg, Intuniv at 1mg, and Circadian at 2mg. My background includes experiences of childhood trauma that may have influenced my current condition. Recently, I've noticed troubling heart rate fluctuations, with my pulse racing between 140 and 160 beats per minute during mild activities. Additionally, I've observed occasional spikes in my blood pressure during these episodes. The symptoms seem to intensify along with my menstrual cycle and tend to worsen in hot weather. Occasionally, I experience visual disturbances, specifically black spots, and I am also frequently dealing with constipation. To investigate these issues, I've undergone a 24-hour blood pressure monitoring test, a 48-hour Holter monitor, an echocardiogram, and several EKG tests. My hospital visits have numbered two, and I've consulted with sixteen different doctors, alongside urgent care support. They have examined my cardiac markers and checked my iron levels, among other things. These symptoms have been persistent for approximately eight months. Despite maintaining a reasonable diet, staying hydrated, and ensuring I get enough rest, I struggle to find a resolution. Numerous medical professionals attribute my symptoms to anxiety; however, I’m unconvinced this is the root cause. Functioning at school has become particularly arduous, and I often feel unwell. A recent appointment with my pediatrician revealed no significant findings, which has left me feeling more lost than ever. One doctor mentioned that my symptoms could be indicative of Functional Neurological Disorder (FND) and OCD, which has added to my confusion. My counselor has suggested that I might be experiencing symptoms of Mast Cell Activation Syndrome (MCAS) or PANDAS/PANS. I am at a stalemate and would sincerely appreciate any guidance on how to move forward. :)
Answers (1)
2/13/2026, 9:30:49 AM
OpenHealth AI
I'm truly sorry to hear about the challenging journey you've been on regarding your health. Navigating through these various medical concerns, especially at a young age, can be overwhelming. Your symptoms and existing diagnoses—including anxiety and complex health manifestations—are clearly taking a toll on your daily life. Let's break down your situation and outline some steps you can take.
Key Points:
- Your symptoms, including heart rate fluctuations, blood pressure changes, and visual disturbances, are concerning and need careful attention.
- Anxiety might be part of the picture, but it's essential to explore other underlying issues thoroughly.
- Collaborating closely with a healthcare professional who understands your unique situation is crucial.
Overview of Your Situation:
- The rapid heartbeat and blood pressure spikes could be related to various factors, including anxiety, hormonal changes during your menstrual cycle, or other underlying conditions. It's encouraging that you've already undergone a comprehensive set of tests, but it seems the root cause still remains unclear.
- The additional symptoms like visual disturbances (black spots) and constipation further complicate your situation and deserve a closer look.
- Given your medications, there may also be interactions or side effects contributing to some of your symptoms.
Next Steps to Consider:
-
Record Symptoms: Keep a detailed diary of your symptoms, noting when they occur, their intensity, possible triggers (like menstrual cycle timing or weather), and any associated activities or stressors. This information can provide invaluable insights to your healthcare provider.
-
Stay Hydrated & Monitor Diet: Continue with your good practices of hydration and a balanced diet. However, try to monitor foods for potential allergens or triggers, especially if MCAS is suspected. Keeping a food diary alongside your symptom diary can help identify patterns.
-
Seek a Specialist: If you haven't already, consider consulting with a specialist such as a cardiologist for your heart symptoms and possibly a neurologist for the visual disturbances. A functional medicine expert might also help explore issues like MCAS or FND more thoroughly.
-
Explore Therapy Options: Cognitive Behavioral Therapy (CBT) or other therapeutic options may assist with managing anxiety. Even if anxiety isn’t the sole cause of your physical symptoms, addressing it can enhance your overall well-being and coping strategies.
-
Support Network: Engage your support system, whether it’s friends, family, or support groups for adolescents with similar diagnoses. Sharing experiences can relieve feelings of isolation and provide validation.
-
Follow Up on Previous Diagnoses: Stay proactive about any previous suggestions, like FND or PANDAS/PANS. Seek a second opinion if necessary, and don’t hesitate to discuss these possibilities with your medical team.
-
Consider Regular Follow-ups: Given the complexity of your situation, regular check-ups with your healthcare providers can help track your progress and adjust treatment plans based on emerging symptoms.
It's completely understandable to feel lost; you're navigating a complex tapestry of symptoms and potential diagnoses. Please remember to check in with your healthcare providers about your experiences and advocate for yourself, especially if things feel unresolved. You're not alone in this, and I hope these suggestions provide some clarity on your path forward. If you have any more specific questions or need further elaboration on any points, feel free to reach out.
Related Questions
Navigating a Tough Morning: Seeking Help and Making Choices
Age: 23, Gender: Female-to-Male (FtM), Height: 5’9”, Weight: Untracked (potential recovery from an eating disorder) When facing mental health crises, especially if thoughts of self-harm or suicide arise, it's critical to seek immediate assistance at the emergency department (ED). Preceding this moment, my mother insisted I remain at home and did not permit me to visit the ED, which left us both throughout the night without much sleep. I’m presently feeling exhausted, sore, and somewhat disoriented. Although I refrained from taking drastic action, I had consulted a nurse and a crisis hotline who both suggested that I negotiate with my mom about going to the ED, given that I had a plan but hesitated to follow through. Now that morning has arrived, my feelings are mixed. On one hand, I sense a wave of embarrassment, and on the other, I’m grappling with anxiety and a feeling of nausea. My next appointment with my therapist is not until a week from now, as I had scheduled it two weeks back. I'm anxious about whether I can endure the wait without facing a decline in my mental state, as the last week has been a rollercoaster. Currently, I’m uncertain about the best course of action. Should I contact the nurse line for guidance? Should I wait for two more hours until the behavioral health department opens? Is it even productive to go in if my thoughts of acting upon my plan have diminished considerably since last night, even though some part of me still struggles with it? I’m not sure I’m in a position where I'm significantly at risk, at least not majorly. However, I feel restless and hesitant to elaborate, as I drew my original ideas from a post I found online, not wanting to influence anyone negatively. Health Conditions: Anxiety, depression, OCD, celiac disease, vasovagal syncope with a potential trigger when standing (my blood pressure tends to drop), eczema, urinary tract infection and bacterial vaginosis. Medications: Currently on an Aristada injection (received it Tuesday), a prescribed steroid cream whose name escapes me, midodrine, metroNIDAZOLE (I believe this is the antibiotic in use), and a vitamin D3 supplement at 50,000 units. Please feel free to request further information if required. I sincerely apologize for any trouble this situation may cause.
Struggling with My Diagnosis: A Frustrating Journey
At 27 years old, I've recently welcomed my second child on September 4th, 2025. Standing at 5’3 and weighing 118 pounds, I've encountered numerous health issues in the past, particularly with hypothyroidism. However, my current battle is with a relentless headache that has plagued me since October 2025. Initially, this headache was accompanied by pain in my eyes, though I’m unsure if that's still relevant to my situation now. Upon visiting my ophthalmologist, I was informed of inflammation in both eyes. He prescribed a steroid which alleviated the eye discomfort, but the headache persisted. I first noticed the headache late one evening before Halloween on October 28th, when we were preparing to take my daughter out. Despite trying both Tylenol and ibuprofen alone and in combination, even at maximum dosages, the relief is temporary, and the headache always returns. I've consulted with two primary care physicians. The first was unhelpful and left her practice with barely any notice, attributing my symptoms to high blood pressure headaches and hormonal changes due to my postpartum status and breastfeeding. While my blood pressure is generally stable, it can spike at times, particularly with a three-year-old and a five-month-old in the mix. My second primary doctor quickly prescribed propranolol, but I haven’t taken it due to a medication-phobia stemming from past experiences. She diagnosed me with migraines based on my lab results, which mostly came back normal except for elevated iron levels. I was advised to discontinue iron supplements, though I don’t take any, as I consistently deal with anemia. I initially requested the lab tests hoping to reveal anemia. My thyroid levels were acceptable at the last check around November. The doctor performed a full blood count and metabolic panel, among other standard tests. My MRI was reported as normal aside from indications of microvascular disease, and she insisted that everything pointed to migraines as the issue. When I inquired about further testing to investigate the root cause of my headaches, she dismissed the idea, insisting that additional labs wouldn’t yield any useful information, firmly believing it was a migraine. Yet, I’ve been confronting this headache daily since having my daughter; the pain is all-consuming but currently manifests as a dull ache at the base of my skull. There’s no accompanying nausea, but I have experienced nasal drainage for several months. However, my physician reassured me it wasn’t a cerebrospinal fluid leak. My neurologist examined my reflexes and attributed my symptoms to postpartum issues, encouraging me to stay hydrated, maintain a proper diet, and get enough rest. He recommended magnesium and riboflavin, suggesting I could consider stronger medication if I wished, especially since I'm nursing. The entire consultation lasted about 15 minutes, and he hardly inquired about my background or concerns. Despite acknowledging that migraines are common, I felt dismissed by my primary doctor, who wouldn’t even refer me to a specialist without my OB's prompting. She simply told me to take the propranolol because my tests appeared satisfactory. I, however, don't feel fine. My life has been dramatically affected; I cannot engage in activities I once enjoyed, and the persistent pain leaves me feeling grossly misunderstood. I have an instinct that something is amiss. This doesn’t resemble a typical migraine, and if it truly is, something must be triggering it that remains undiscovered.
Struggling with Everyday Clarity While Excelling at Work – Is This Common?
25 years old, 170 cm tall, 55 kg Hello everyone, I’m reaching out today feeling quite perplexed about my situation and it's starting to weigh on me emotionally. In my professional life, I thrive as a software engineer. I excel at studying and perform admirably within structured settings that allow for systematic processes. However, when it comes to my day-to-day life, I find myself in a starkly different headspace. There are times when I catch myself uttering random words or phrases that seem utterly out of place during conversations. I often forget the simplest of things, such as visiting a friend's house and inadvertently wearing their shoes home, leaving mine behind. During meetings, when new information is presented verbally, I struggle to grasp it as it comes. It’s not uncommon for me to need to retreat with a pen and paper afterward, to thoroughly understand what was discussed. In my everyday experiences, my ability to think clearly seems hindered, and more often than not, I end up with no sound conclusions or rational thoughts after trying to process information. This leads me to feel somewhat foolish or unwise at times. Has anyone else been through something like this? Any thoughts or advice would be greatly appreciated!
Experiencing Some Unusual Symptoms
Hello! I'm a 14-year-old guy, and I woke up today with a notably painful throat. Aside from that, the only other issue I had was a bit of a cough. Just four hours later, things took a turn for the worse, as I developed a fever accompanied by body aches. Currently, my temperature is at 102 degrees, and I’m experiencing nearly all of the common flu-like symptoms. It has been around 14 to 15 hours since I first noticed these issues, and I recently conducted a flu test, which fortunately came back negative for both the flu and COVID-19. I'm a bit puzzled about what might be happening, so if anyone has any inquiries, feel free to ask!
Should I Wait Until March for My Appointment?
I’m a 48-year-old female, standing 5'4" and weighing 190 lbs. My background includes being of Native American and Caucasian descent, and I currently live in the Pacific Northwest. For the past week and a half, I’ve been dealing with various health issues amidst an ongoing transition between healthcare providers. My primary care physician is retiring, and I’m in the midst of establishing care at our local Tribal Clinic. This post is my first on Reddit, so please excuse any oddities in my expression! ### Health History About a year ago, I experienced pneumonia and subsequently didn’t feel like myself. An urgent care visit prompted a trip to the ER due to dangerously low sodium levels, leading to a new diagnosis of diabetes. After testing positive for GAD antibodies, it appears I’m dealing with type 1 diabetes. My previous doctor didn’t provide detailed guidance on managing this condition, but I was prescribed Lantus and Regular insulin. I’ve devised my own dosing regimen, typically taking 8 units of Lantus without prednisone and 10 units when I am on it. For over two years, I’ve attempted to reduce my prednisone dosage. Currently, I'm taking between 5 to 10 mg per day, but I’m eager to see an endocrinologist to discuss better management. I finally have that appointment set for March, alongside a visit to my new primary care physician. I also have a noticeable lump on the left side of my ribcage, which I wanted to mention, though I’m unsure of its relevance. In the past, I have dealt with lupus nephritis and was once diagnosed with stage 3 kidney disease, but my health has significantly improved over the years. Recently, my kidney function tests indicated a moderately reduced eGFR, leading me to limit my protein intake. ### Current Concerns In the last week and a half, I've been experiencing discomfort in my upper left abdomen that worsens with deep breaths and when touched. It feels bloated under my ribs in that region. I have also noticed fluctuations in my blood sugar, with lows occurring both during the day and at night. Curiously, I’ve started to avoid insulin when my blood sugar readings hover around the low end, leading to nighttime levels plummeting to the 50s. When I do eat, even after a meal, my blood sugar can jump up to 150, but it drops quickly without insulin. I’ve been focusing on a healthy diet, primarily vegetables and protein, managing blood sugar levels by using glucose tablets and protein snacks through the night. I felt quite fatigued and mentally clouded, as if I missed my antidepressant dose, but I had taken it as usual. A brief walk to the mailbox resulted in a dramatic drop in my heart rate and blood sugar, reinforcing my anxiety around exercising. I’m concerned about whether these health developments indicate a more serious issue or if I can reasonably wait for my endocrinologist appointment in early March. I appreciate any advice or insight you might have. Thank you for taking the time to read this!