OpenHealth Q&A

Seeking Guidance on a Range of Persistent Symptoms

Greetings, everyone. I’m reaching out to this community to share my experiences and hopefully gather some insights. This will be a lengthy message, so I appreciate your patience in reading. I am a 23-year-old female, standing at 5 feet tall and weighing approximately 115 pounds. Many of my symptoms have been present intermittently since I was around 14 years old. Here’s a rundown of the more prominent issues I’ve faced: - **Ongoing Pain:** I experience chronic discomfort throughout my muscles, joints, and bones. Some days, the agony is so intense that movement is nearly impossible, while on other days, it’s a mere irritation. - **Weakness and Dizziness:** These sensations come and go; some days I feel perfectly fine, while on other occasions, I’m so unstable that I require a cane to walk. - **Extreme Fatigue:** My energy levels fluctuate significantly, yet it’s been ages since I’ve felt truly rested. - **Nausea:** This symptom appears unpredictably. There are times when I can be free from nausea for several months, then periods arise, like the recent one, where the queasiness is severe, preventing me from eating and causing me to lose about 15 pounds due to dry heaving at the thought of food. - **Heart Rate Fluctuations:** I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) during my teenage years due to my inconsistent heart rate. A recent tilt table test, however, indicated I didn’t meet the criteria for abnormal blood pressure changes. Still, the dramatic shifts in my heart rate were sufficient for my doctor to prescribe metoprolol, as my rate can drop from 150 bpm to as low as 50 bpm within moments. - **Migraines:** These are self-explanatory; over-the-counter medications tend to offer little relief once they commence, and they often affect my vision. Now, onto the peculiar symptoms: I sometimes experience unusual “episodes” that either feature or exclude what I call “twitches.” Prior to these, I often feel strange—sometimes with more warning than at other times—eventually leading to fainting. Occasionally, these episodes last just a few minutes, but of late, they’ve extended in duration where I will lose consciousness briefly, regain a sort of awareness, yet remain incapable of movement or comprehension, followed by another fainting spell. This cycle can repeat for hours or consist of intermittent awareness. The “twitches” vary; they might manifest as random jerks in my arm or head, or escalate to full-body spasms. These episodes can last several minutes and may recur sporadically without me fully regaining consciousness in between. Since I was 14, there have been fluctuations in the frequency of these episodes—there are periods when they occur frequently and then others where I am free from them for long stretches. I have yet to identify a reliable trigger, possibly exhaustion, though it’s not consistent. More concerning is that I’ve begun to experience choking during these episodes, characterized by excessive foam in my mouth and actual breathlessness. A specialist diagnosed me with Mast Cell Activation Syndrome (MCAS) when I was 16, leading me to believe these episodes might be linked to anaphylaxis. Friends have administered epinephrine to me, which offers some relief, but I remain incapacitated for some time and do not wake immediately. A recent visit to the emergency room confirmed suspicions: while the doctor noted the absence of typical anaphylactic symptoms like rashes or swelling, he mentioned that epinephrine could assist if my blood pressure dropped. Thus, I am left puzzled about what’s occurring. In regard to medical investigations, as you might expect, many results have come back normal. I was diagnosed with mitral valve regurgitation in my youth, but it was deemed resolved in later years. A brain MRI at 19 revealed minor tissue loss, not enough for a diagnosis of Chiari malformation, and a more recent MRI also showed normal findings. Blood tests typically yield normal results, although my liver enzymes were elevated recently, and specific cell counts (monocytes and eosinophils) were abnormal, albeit within acceptable ranges. Blood pressure readings can be erratic (ranging from extremely low to exceptionally high) with no clear correlation to my symptoms. EEG tests have been normal; however, since I haven’t had an episode during one, I’m inclined to doubt that all my occurrences are seizures. This leads me to question the potential role of a psychological component, especially considering that numerous doctors have suggested that my experiences may have psychological roots. Yet, I struggle to identify any consistent psychological patterns in my situation. At this stage, I’m not seeking a definitive diagnosis. I would greatly appreciate any suggestions regarding potential tests or pathways I could explore. These issues are significantly affecting my daily life as a PhD student in biomedical sciences, and I find myself overwhelmed by it all. Thank you for reading through my lengthy post!

Answers (1)

8/29/2025, 4:58:09 PM

OpenHealth AI

Thank you for sharing your detailed experiences. It’s clear you are navigating a complex set of symptoms that significantly impact your quality of life. Addressing these concerns requires careful consideration of various aspects of your health.

Main Points:

1. Chronic Symptoms & Impact: You are dealing with ongoing pain, weakness, dizziness, fatigue, nausea, heart rate fluctuations, migraines, and more concerning episodes, which are affecting your daily activities.
2. Potential Overlap with POTS and MCAS: Your history of Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) suggests that your symptoms may be interconnected and complicated by these underlying conditions.
3. Next Steps: Focus on symptom management through lifestyle adjustments, monitoring triggers, and potentially further diagnostic testing to clarify your condition.

Explanation:

Your symptoms suggest a potential interaction between several conditions. The variability of your symptoms, particularly the “episodes” and fluctuations with dizziness and weakness, aligns with the complexities of both POTS and MCAS. The alarming choking episodes during these times raise concerns that need closer monitoring and possibly a re-evaluation of your treatment regimen. Additionally, considering your academic pressures, balancing mental and physical health is essential.

Specific, Prioritized Next Steps:

1. Symptom Diary: Start keeping a daily journal of your symptoms, including the intensity, duration, and any potential triggers (food, stress, activity level). This information can be crucial for any healthcare provider assessing your overall health pattern.

2. Lifestyle Modifications:

   • Hydration: Increase fluid intake to help manage your blood pressure and heart rate stabilization. Aim for electrolyte-rich fluids, especially if you have a history of dizziness or faintness.
   • Dietary Changes: Consider adjusting your diet to identify foods that may trigger your nausea and symptoms. Small, frequent meals rather than large ones might reduce the nausea you're experiencing.
   • Physical Activity: Engage in light, regular activity as tolerated. Focus on gentle exercises that improve strength and balance while avoiding exertion that may lead to episodes.

3. Medication Review: Since you’re on metoprolol, discuss with your healthcare provider whether your current dosage and medications might require adjustment in light of the symptoms you experience.

4. Consult Specialists: If you haven't already, consider consulting:

   • A neurologist who specializes in seizure disorders or other neurological conditions, especially for the episodes you described.
   • An allergist or immunologist regarding your MCAS symptoms, to fine-tune your management and explore additional treatments.

5. Mental Health Support: If you suspect that psychological factors may be playing a role, consider speaking with a mental health professional, especially one familiar with chronic illness. This can help you cope with the emotional stress related to your symptoms.

6. Emergency Action Plan: Establish a plan for your episodes, especially regarding how to safely manage fainting or choking situations. Ensure friends and family are aware of how to help if necessary, including when to use epinephrine.

Remember, it’s important to prioritize your health and not hesitate to seek second opinions if you feel it will lead to better understanding and management of your symptoms. You are taking proactive steps by seeking advice, and that's commendable in your journey towards better health.