Feeling Overwhelmed: Seeking Guidance for Ongoing Symptoms
At 22 years old, dealing with hypermobile Ehlers-Danlos syndrome (hEDS), Autism-Multiple Disabilities (AuDHD), I stand at 5'8" and weigh 80 kg. A couple of years ago, I experienced significant symptom relief from Postural Orthostatic Tachycardia Syndrome (PoTS) after my pregnancy, resolving around 90%. Currently, I am based in the UK and prescribed 20 mg of methylphenidate three times daily. For the past four years, I've been enduring sporadic chest pain episodes. The first two instances coincided with taking Sumatriptan 100 mg, which was prescribed for persistent headaches despite me not having migraines. I discontinued it, opting to manage the headaches myself. Until recently, I hesitated to seek medical advice due to a fear of being trivialized. These episodes have persisted roughly every few months, and it was only lately that I recognized a potential correlation with hormonal changes, particularly following the cessation of hormonal contraception. The symptoms I face include: - Intense crushing chest pain radiating down my arm, akin to being struck by a truck - Nausea - Sweating and clamminess - The pain remains unchanged despite alterations in breathing, shifting positions, or applying pressure to my chest. During my first visit to the general practitioner, I felt misunderstood; they attributed my occasional nausea during episodes to reflux. Tests for H. pylori resulted in a diagnosis of gastritis, although I exhibited no related symptoms. The prescribed omeprazole ironically led to the onset of reflux, prompting me to discontinue its use as I never had issues that would warrant such medication. Determined to seek a second opinion, I specifically requested a female GP, hoping for a more comprehensive understanding. While she was kind, she dismissed my concerns, attributing the strange nature of my experiences to EDS, and recommended simple deep breathing techniques during episodes. To say I find this approach unhelpful would be an understatement; the intensity of these episodes is so overwhelming that I often find myself pleading for relief. I'm at a crossroads, unsure of how to proceed in pursuing a thorough evaluation of my symptoms. The uncertainty is increasingly alarming, especially given that I've experienced three significant episodes this year alone. I simply want this to come to an end.
Answers (1)
8/21/2025, 12:02:41 PM
OpenHealth AI
I'm glad you've reached out for guidance regarding the overwhelming symptoms you're experiencing. It's clear that you have been through quite a lot, and your desire for relief and understanding is completely valid. Let's break down your situation and explore structured next steps you can take to better address your symptoms.
Main Points:
- Your symptoms—chest pain, nausea, and other associated experiences—are concerning and deserve thorough evaluation.
- There may be multiple factors contributing to your symptoms, including your hypermobile Ehlers-Danlos syndrome (hEDS) and potential hormonal influences.
- It’s important to find a healthcare professional who will take your concerns seriously and help you find answers.
Explanation:
The intense chest pain, nausea, and associated symptoms you've described can arise from various causes. While you've suggested hormonal changes as a potential trigger, your history of PoTS and hEDS can also contribute to cardiovascular symptoms, including atypical chest pain. It's understandable that previous dismissive encounters have left you feeling frustrated.
Your symptoms, such as pain radiating down the arm, could suggest a need to rule out heart-related issues as well as consider other explanations unique to your diagnoses. Furthermore, the correlation of symptoms with hormonal changes is worthwhile to follow up on; fluctuations can indeed impact many bodily systems.
Next Steps:
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Keep a Detailed Symptom Diary: Track the frequency, duration, and characteristics of your chest pain episodes, noting any potential triggers such as hormonal changes, stress, or dietary factors. This information is invaluable during consultations with healthcare professionals.
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Seek a Specialist’s Opinion: Given your complex history, consider pursuing a consultation with a cardiologist who has experience treating EDS patients or a specialist in autonomic disorders. They may provide a more nuanced understanding of your symptoms.
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Explore Additional Testing: Ask for tests that evaluate your heart health more comprehensively, such as an echocardiogram or a stress test. Additionally, discussing the results of autonomic function tests may help clarify your situation regarding PoTS.
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Communicate Your Needs: When seeking further medical help, express your need for understanding and a thorough evaluation. Don’t hesitate to explain the seriousness of your symptoms and how they impact your daily life, which may help facilitate a better response from your healthcare provider.
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Consider Holistic Management: While waiting for more answers, explore non-pharmaceutical approaches for symptom management, such as cognitive behavioral therapy (CBT) to help with anxiety and coping strategies, which can also support your overall mental well-being.
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Support Network: Connect with support groups for individuals with hEDS or PoTS. Engaging with others who understand your experience can be affirming and provide additional strategies for symptom management.
Remember, your experiences are valid, and it’s essential to prioritize your health. You deserve care that considers all aspects of your health, including the emotional impacts of chronic symptoms. If symptoms worsen or change drastically, please seek immediate medical attention. Don't hesitate to reach out if you have further questions or need more specific advice.
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