Does this sound like a CSF leak? Looking for advice before moving forward with testing.
Hi everyone. My neurologist recently brought up the possibility of a spontaneous CSF leak, and I’m feeling overwhelmed. I’m not looking for a diagnosis, just wondering if anyone with a confirmed leak had a similar experience.
For about a year now, I’ve had what I describe as a daily tension-type headache. I usually wake up without a headache, and then it gradually builds throughout the day, becoming its worst around 5 PM. The pain is mainly in my temples, the base of my skull/occipital area, and my neck (traps and levator scapula area).
When this first started in Aug 2026, I also experienced fatigue, dizziness, lightheadedness, and ears ringing frequently. Since I started taking an SSRI, these symptoms have mostly subsided (I’m still fatigued). Occasionally I also have migraine attacks with visual aura and light/sound sensitivity, so I’ve been diagnosed with chronic migraine as well.
One thing that confuses me is that certain positions seem to trigger or worsen my headache. Looking down at my phone for too long, watching TV with my chin tucked, or bending over (like organizing things on the floor for a few minutes) can bring one on or make it much worse.
So far I’ve tried:
Managing stress (SSRI, and talk therapy)
Brain MRI with and without contrast (normal)
Cervical MRI (only minor disc bulges)
2 rounds of migraine botox
Occipital nerve block
Trigger point injections
Migraine medications (amitriptyline, topamax, propranolol, sumatriptan, rizatriptan, ubrelvy, Emgality)
Physical therapy
Dry needling
Massage therapy
Chiropractic care
The Botox and occipital nerve block helped somewhat, but nothing has stopped the daily headache.
I also have some signs of generalized joint hypermobility (thumbs to forearms, pinkies bend past 90°, knees lock back, history of multiple ankle sprains/fractures).
After hearing my history, my neurologist recommended a repeat brain MRI, a myelogram, and possibly an epidural blood patch because she suspects spontaneous intracranial hypotension.
For those of you with a confirmed CSF leak:
Does this sound similar to how your symptoms started?
Were your headaches worsened by bending over or neck position?
Would you get a second opinion before a myelogram/blood patch? If so, what type of specialist would you recommend?
Thanks so much. I’m feeling pretty anxious about moving forward with invasive testing and would really appreciate hearing your experiences.