OpenHealth Q&A

Seeking Guidance on Persistent Neuropathy and Nasal Pain

I am a 36-year-old Caucasian male seeking insight regarding a perplexing neuropathy that has proven difficult to diagnose. **Background:** My medical history includes a diagnosis of ulcerative colitis, for which I underwent a complete colectomy and the creation of a j-pouch in 2014. Since then, I have been taking loperamide at a dosage of 2 mg three times a day indefinitely, along with 4000 IU of vitamin D, particularly during the winter months. In 2018, after straining excessively during bowel movements, I encountered a neurological episode characterized by a headache and a peculiar "spacey" sensation, along with a near-dizzy feeling. An MRI of the brain with contrast was performed, revealing no abnormalities, and the symptoms subsided within a week. However, in the months that followed, I began to suffer from recurrent headaches which eventually transformed into localized pain in the left sinus area. **2019-2020:** After being referred to an ENT specialist by my primary care physician due to frequent headaches, I was initially treated for suspected allergies following a negative CT scan of my sinuses. The ENT noted a mild deviation of the left septum but did not recommend surgical intervention. Eventually, I ceased taking Azelastine after a year because the pain continued to worsen and became primarily localized in the left nasal passage, accompanied by nasal discharge and occasional bleeding. Notably, discontinuing Azelastine seemed to alleviate most of my symptoms, though some focused pain persisted. **2020-2022:** I coped with the pain silently during this period. **2022:** Having relocated, I sought the expertise of a new ENT to address my persistent pain, which tended to worsen in the afternoons and resulted in fatigue and mental fog. A sinus CT revealed only a mildly deviated septum. Despite my previous indications that Azelastine was unhelpful, the ENT prescribed both it and Flonase for a month to rule out allergic reactions. After this trial, the ENT proposed correcting the deviated septum surgically, noting the presence of a bony spur in the left nasal passage that could be contributing to my discomfort. I consented, and the surgery took place in December 2022. **2023:** Post-surgery, the healing process was sluggish. I experienced simultaneous pain and numbness in my nasal area, along with the emergence of neuropathy in my lower legs. Upon contacting the ENT, I was advised to consult my PCP. This led to further investigations, including a head MRI with contrast, a neck MRI with contrast, an EMG nerve conduction study on my legs, and extensive blood tests—all of which returned negative results. Notably, my neuropathy intensified in the afternoons and appeared to coincide with my nasal pain. **2024-2025:** During this time, I began experiencing Raynaud's phenomenon in my left toes during the colder months. Autoimmune screenings were conducted, but results were also negative. Although a rheumatologist declined to see me due to these findings, I have a family history of autoimmune issues, including microscopic colitis, psoriasis, Raynaud’s, and stiff person syndrome. **Current Situation:** Now, I see fluctuations in the severity of my neuropathy, which I believe is linked to the ongoing pain and numbness in my left nasal passage and any accidental abdominal straining. Following significant exertion, I feel pressure in my head around the nasal area, akin to inflation—this causes heightened symptoms that can linger for weeks. I notice that symptoms peak in the afternoon, tapering off after physical activity and improving by bedtime. The pain I experience is not located in the sinuses; rather, it is felt on the surface and within the bone, extending backward to the furthest reach of a Q-tip. **Relief Strategies:** I have found some measures that seem to alleviate my symptoms: - Getting adequate sleep - Avoiding any form of abdominal straining, whether on the toilet or lifting heavy items - Engaging in cardiovascular workouts, as I’ve noted a significant reduction in neuropathy following at least 15 minutes of vigorous exercise, which I suspect has an anti-inflammatory effect. - Supplements with anti-inflammatory properties, like fish oil and black seed oil. On one occasion, taking black seed oil—initially for sleep—almost completely relieved my nasal pain and neuropathy the next day, although this effect diminished with consecutive uses. This experience has convinced me of the correlation between my neuropathy and nasal issues, particularly since previous medical opinions suggested no connection. I humbly seek any suggestions or insights you may have. The ENT indicated that my nose has healed, attributing my ongoing pain to nerve-related causes with no further action they can take. However, the pain persists at the same site as before the surgery—now accompanied by a spreading numbness that mirrors my earlier symptoms, particularly peaking in the afternoon. Moreover, my PCP has expressed limitations in managing my neuropathy, though she mentioned the possibility of reaching out to the Cleveland Clinic. After waiting extensively for a response from them following several follow-ups, she ultimately referred me to the Undiagnosed Diseases Network at Cleveland Clinic, which focuses on genetics. I doubt they will provide the assistance I need since my issues originated from a physical event years back. I suspect there may be a connection between my brain and sinuses concerning blood flow, possibly indicating a small blockage similar to an aneurysm. Any help you can provide would be invaluable to me.

Answers (1)

8/14/2025, 1:21:04 AM

OpenHealth AI

Overview: Your symptoms of persistent neuropathy and nasal pain are complex and likely interconnected, particularly after undergoing surgery and experiencing significant health changes. It’s understandable to seek clarity regarding these issues, especially given your history of ulcerative colitis and other health complications. Here’s a structured approach to help you manage these symptoms more effectively.

Explanation: Neuropathy can emerge from various sources, including nerve damage, inflammation, or even referred pain from other areas, such as your nasal region. Given your previous ENT evaluations and the negative results from extensive imaging and labs, it is crucial to focus on symptom management while seeking further insights into the connection between your symptoms. The pain and numbness you're experiencing could be due to nerve irritation resulting from inflammation or structural issues, possibly related to your sinus surgeries. The fluctuation in symptoms based on physical activity and time of day may indicate a response to exertion or changes in circulation.

Next Steps:

1. Symptom Diary: Keep a detailed record of your symptoms, noting their timing, severity, and any possible triggers (e.g., physical activity, dietary changes, medications). This may help identify patterns related to your neuropathy and nasal pain.

2. Dietary Adjustments: Since you’ve noticed some relief with anti-inflammatory supplements, consider consulting with a nutritionist to create a dietary plan rich in anti-inflammatory foods (like fatty fish, leafy greens, nuts) and to evaluate any food triggers, especially in relation to your ulcerative colitis.

3. Consistent Exercise: Continue your cardiovascular workouts as you have found them helpful. Engaging in regular physical activity can positively impact both your overall health and nerve function.

4. Explore Pain Management Options: While pharmacological management may have been suggested as limited, you might consider exploring non-pharmacological options, such as physical therapy or acupuncture. These approaches can help with pain relief and might also provide insights into the neurological aspects of your symptoms.

5. Follow-Up on Referrals: Since you’ve been referred to the Undiagnosed Diseases Network, maintain communication with both your PCP and the referral clinic. They may provide unique insights, especially regarding possible underlying genetic factors affecting your symptoms.

6. Inquire About Nerve Evaluation: If symptoms worsen or significantly impact your quality of life, consider asking your healthcare team about a more specialized evaluation of your nerves — this could involve a neurology consultation focusing specifically on neuropathic pain.

7. Monitor for Red Flags: Pay attention to any new symptoms, particularly substantial changes in sensation, motor function, or severe headaches. If they occur, reach out to your healthcare provider promptly.

While continuing to seek answers can be challenging, your proactive measures and symptomatic insights are powerful tools in managing your condition. Stay hopeful as you navigate these difficulties, and prioritize self-care strategies that promote your well-being.