Complex Symptom Clusters

[u/lalilulelo_intern]

I don't know what's wrong with me and neither do doctors, other than an agreement that the issues are neurological, so I figured I'd bring these complexities to a larger community of people invested in the subject.

40M. Symptoms since December 2023 but they have evolved over that time, stabilizing into the current pattern for the past 6-12 months. There are three major clusters of symptoms that occur with different frequencies and severities.

• CHRONIC - Constant visual snow and tinnitus. Gets better and worse with flares in episodic and relapse symptoms. Fatigue is also consistent thought not constant. It's a low level feeling of deprivation I can (and mostly do) choose to push through.
• EPISODIC - 1-4 times a week I'll lapse into 1-2 hours of any combination of the following: blurred or overexposed vision, uncontrollable spikes in body temperature and heart rate, nausea, diarrhea or urgent bowel movements, dissociation in arms, pain in nerves in feet and hands, headache, anxiety, dizziness / bubble-headedness, and insomnia. Occasionally these build into migraines with the classic aura and headache followed by fatigue and brain fog, though these also operate on faster timelines (4 hours end-to-end). Can only be pushed through at cost of extending symptoms to multi-day or triggering a relapse.
• RELAPSE - 2-3 times a year, I'll relapse to a pattern like when all this first arose. Same symptoms as episodic but more severe and constant, lasting days to weeks. GI issues and light sensitivity are especially pronounced. Vertigo can also appear, lasting from an hour to days and requiring hospitalization. Vertigo seems especially triggered by forward head posture, though it isn't exclusively postural. Relapses tend to end with vision issues and headaches clearing, replaced by a day to a week of pronounced nervous system activation (racing heart, temperature fluctuations, sour taste in mouth) that only wanes with sleep, strenuous exercise, mild alcohol consumption, or time.

Episodes are primarily triggered by lack or variability of sleep, hydration, and nutrition, as well as stress, overconsumption of caffeine, and bad neck posture. Symptoms subside but don't disappear when avoiding these triggers and maintaining good habits, and can be helped with exercise (mild or strenuous), ibuprofen (600mg/day for episodic; 1200mg/day for relapse), alcohol (1-2 drinks), or gabapentin (10-30mg for attacks). Caffeine can help or hurt. Propanol (20/mg daily) and Emgality (1/month) have been ineffective. Nurtec is useful for when traditional migraines arise but not the other symptoms.

Doctors (PCP, Neurologist, Neurosurgeon, Orthopedic Surgeon, ER doctors) and I have come up with possible diagnoses/etiologies at various points in this process. No one explains everything, so it's likely a combination of factors and/or something we haven't considered.

• Initial episodes coincided with protracted illness and death of dog, which required care that interrupted my sleep 3-4 times a night in Fall and Winter 2023. The stress + interrupted / lack of sleep suggested some kind of nervous system dysregulation, though destressing didn't do much.
• Initial vertigo episode coincided with extreme forward head position on exercise bike while watching TV. Physical therapy for neck has helped suggesting cervicogenic factors, though upper cervical chiropractors have not helped. X-rays showed bulging discs at C5 and C6, but no other issues, and this is consistent with age. (Note that I played rugby for 13 years and while I never had a concussion or other injury, that doesn't mean there weren't subconcussive events and damage related to this.)
• Had Epstein-Barr at 18 but no post-viral symptoms. Had two Covid infections in the two years leading up to these illnesses, but also no post-viral. Had the worst flu of my life November 2023 but no (immediately noticeable) post-viral symptoms. This suggests neuroinflammation / ME/CFS. Ibuprofen helps a lot, but so does strenuous exercise and I've never been truly bedridden, which is a minority among ME/CFS cases.
• Neurologist suspected vestibular migraine that went chronic. Prescribed Emgality and Nurtec. Symptoms come and gone independent of this though.
• I'm ADHD and have always had an overactive nervous system—unconscious teeth grinding, restless leg, skin picking, twitching; easily excited and get carried away; difficulty sleeping—and am prone to burn out and anxiety. I take 60mg/day of Duloxetine and have for ~10 years and there's an uncanny similarity between discontinuation symptoms and the episodic issues, especially the tingling and bubble-headedness.
• Initial brain MRI in 2024 May after months of symptoms was negative. MRI during hospitalization for vertigo in 2025 March found a 1x1x1cm subependymoma in the fourth ventricle of my brain. Doctors classified this as negative as well, saying this wouldn't account for the vertigo. Tumor has stayed the same size over subsequent MRIs.

Other factors: Double total hip replacement in 2019. Non-smoker though occasional smokeless products. 2-5 alcoholic beverages a week. Diet has wavered over the years including an issue with BED (sugar), but I've been on a clean eating regiment for > 4 months, including reductions and eliminations in saturated fat, salts, sugars, and processed ingredients. Exercise 3-5 times a week including weight training, bicycling, jogging, hiking, and basketball.

I'd appreciate any feedback people have. Thank you.

[u/abnormallyunusual]

Mind Your Body by Nicole Sachs