OpenHealth Q&A

Frustrated with My Headache Specialist: Seeking Relief Amidst Pain

I’m a 22-year-old woman from Canada, weighing 110 pounds and standing at 162 cm, grappling with chronic headaches. My medical history includes POTS, which is currently well-managed with metoprolol, and hypermobile Ehlers-Danlos syndrome. Since June, I've been plagued by intense headaches accompanied by nausea and dizziness whenever I’m upright, whether sitting, standing, or even lying down. I have undergone four epidural blood patches that provided complete symptom relief for approximately a week each. Other temporary relief methods have included IV fluids, caffeine, and opioid medication during my hospital stays, which only reduced my pain to about a manageable level of 4 out of 10. Additionally, intrathecal contrast injections for a digital subtraction myelogram also alleviated my symptoms for around a day. Unfortunately, I've had no success with other treatments such as dexamethasone, ketorolac, prednisone, amitriptyline, erenumab, sphenopalatine ganglion block, and occipital nerve block. I’ve gone through numerous diagnostic tests, including brain MRIs, CT angiography, spine MRIs, and a digital subtraction myelogram. An initial MRI of my eyes indicated signs of spontaneous intracranial hypotension (SIH), but subsequent imaging after my fourth blood patch showed improvement in my condition, leading the doctors to suggest the earlier reading might have been erroneous. Since October, I have been seeing a headache specialist at a clinic. However, each time I reach out to report my worsening symptoms, her office insists my next appointment isn’t until January. After my recent follow-up, she only pushed my next appointment to May without offering any immediate solutions to manage my pain. Reluctantly, she has now agreed to arrange for a dynamic CT myelogram after I highlighted that the Mayo Clinic would prioritize this test for my issues. Yet, the wait time for this procedure stretches out for months—I was just referred to it days ago, leaving me largely bedridden with varying distress throughout the day. Missing school has become a necessity. I fear the potential for blood clots, especially since I previously suffered one from an IV, as well as the risk of further muscle deterioration due to inactivity. Since my appointment in January, I have sought emergency help twice due to excruciating pain, expressing my desperation to alleviate my suffering. However, the ER staff won’t reach out to a neurology consultant or conduct even a basic examination. They claim they cannot assist since I am already under the care of an outpatient headache specialist, despite the fact that she has not provided any meaningful assistance. During my first visit, the ER physician attempted to contact the chronic pain service, which unfortunately does not handle headache cases. I even requested a referral to a psychologist because I can no longer bear this pain, but that request was turned down as well. Repeated inquiries to my headache neurologist about potential pain management options—such as home IV treatment or migraine medications—have yielded no response. She dismisses the idea of trialing medications for my situation and refutes the possibility of having SIH, even when previous hospital neurologists recognized that potential. Her referral to a POTS specialist, which was supposed to address my headaches, was declined because my condition is already well-controlled, and the specialist does not handle headache treatments. Regrettably, this clinic is the sole option in my city for headache management, despite their website claiming to deal with complex cases, including positional headaches. Other resources, such as the chronic pain clinic and general neurology, have also declined to take on headache patients. My family physician has stated that she can do nothing further to assist me. In the face of unbearable pain and a lack of support, I feel utterly lost. I have pushed to secure a second opinion from this clinic in July but surviving the worsening symptoms without any form of management feels nearly impossible. Is there any additional support I should seek? Am I wrong to believe there are alternatives that haven’t been explored yet?

Answers (1)

3/22/2025, 12:10:53 AM

OpenHealth AI

I’m really sorry to hear how difficult this situation has been for you. Chronic headaches, especially when combined with conditions like POTS and hypermobile Ehlers-Danlos syndrome, can significantly impact your quality of life. It’s commendable that you are actively seeking answers and relief amidst such challenges.

Key Points:

1. Chronic Headaches and POTS: Your symptoms could be interconnected, and understanding their relationship is essential.
2. Current Treatment Limitations: It’s concerning that you haven't received adequate support from your headache specialist or other healthcare providers.
3. Next Steps for Support: Exploring additional resources and potential alternatives can be vital.

Explanation:

Chronic headaches can arise from various causes, especially in individuals with complex medical histories like yours. Your history of spontaneous intracranial hypotension and responses to treatments suggest that a deeper examination and possibly alternative treatments may be necessary. It’s understandable to feel lost and frustrated when existing support systems seem inadequate.

Prioritized Next Steps:

1. Seek a Second Opinion: Since the current clinic is not providing the necessary support, it’s crucial to pursue a second opinion. Look for headache specialists or pain management clinics outside your city if possible. Telehealth consultations may also allow you to connect with specialists at larger centers who can provide fresh insights.

2. Document Everything: Keep a detailed headache diary, noting the frequency, duration, intensity, and any associated symptoms (like nausea and dizziness). This information can be critical when you meet new specialists, even in documenting how the condition has worsened and how it affects your daily life.

3. Pain Management Alternatives: Explore non-pharmacological options, such as cognitive-behavioral therapy (CBT) or physical therapy tailored to address headaches and POTS symptoms. These approaches can sometimes alleviate pain and help manage symptoms when combined with medical treatment.

4. Contact Patient Advocacy Groups: Reach out to organizations dedicated to headache disorders, chronic pain, or your specific conditions (like Ehlers-Danlos Syndrome). They often have resources, can provide support, and may help advocate on your behalf for better treatment options.

5. Consider Lifestyle Modifications: Continue to monitor hydration and dietary habits, as both can influence headaches, especially in the context of POTS. Gentle, regular physical activity, as tolerated and guided by a physical therapist, may also help improve symptoms over time.

6. Research Experimental Treatments: Some patients benefit from treatments like neuromodulation (e.g., non-invasive brain stimulation techniques) or newer pharmacological therapies. Research ongoing clinical trials that may fit your profile and offer opportunities for novel therapies.

7. Build a Support Network: Engage with support groups to connect with others who understand your experience. Online forums, local groups, or social media can provide emotional support and shared coping strategies.

Closing Note:

You deserve relief and support, and it’s important to continue advocating for yourself. If your symptoms worsen, don't hesitate to express the urgency of your situation during any assessment or outreach to prospective new healthcare providers. You're taking significant steps towards finding a pathway to relief, and I truly hope you're able to find a supportive and effective treatment soon.