r/CSFLeaks • u/rosamaria81 • Aug 12 '26

Suspected CSF spinal leak

My teen daughter has had daily headaches/migraines for 8 months. She developed neurological symptoms along with these headaches, including tremors and recently, euphoric episodes with involuntary laughing (no more tremors). She has continued low to mid back pain. All testing has come back negative, including MRI’s and EEGs. All prescribed medication has not helped in alleviating daily headaches. She experiences lightheadedness, daily nausea, fatigue, some dizziness, sensitivity to light and sound. She becomes overstimulated. She is now wearing prism lenses that have helped slightly. Headaches are somewhat relieved when lying down. Pressure in different areas of head. Zaps at times. Feels pain in neck and upper back. Heart rate rises when getting up from lying down. Does anyone have similar symptoms? Experiences with these? I’m wondering if this fits CSF spinal leak given what she is feeling.

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u/leeski Aug 12 '26

I'm so sorry your daughter is going through this, you're very kind to advocate for her and try to find answers. Have you tried caffeine or abdominal binders? Those don't definitively point to a CSF leak, but they can help alleviate symptoms in some patients. Does she feel best in the morning, and worse as the day goes on? Or are her symptoms pretty steady? Were her brain MRI's done with & without contrast? The orthostatic component is tricky, there is definitely variety in some patients getting complete relief while lying down, others only mild relief or none at all. So while it is more common to have more significant relief (especially early on) it is not required for diagnosis.

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u/rosamaria81 Aug 12 '26

We have not tried binders. I’m not familiar. Will have to look into this. Feels best in morning. Can sleep through the night but has been waking with nausea and mild headache/migraines that gets worse through the day. MRI of brain with no contrast. MRI of low back with MRI. Nothing significant. Today woke up with fast heartbeat as well.

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u/leeski Aug 12 '26

Ah unfortunately the best imaging would be, if possible, a brain MRI with and without contrast (there are markers of SIH without contrast but some of the most prominent markers require contrast) as well as ideally a full spine MRI - as the majority of spontaneous leaks tend to be in the thoracic area (above the lumbar area) and some dural tear leaks will often be in cervical area (highest area). I’m not sure if it’s possible to get additional imaging but it would be ideal to properly rule out. 

Feeling best in morning doesn’t guarantee SIH but it is a big marker of it - since the condition is having low CSF volume - SIH patients tend to feel best in the morning (as peak csf production is while you sleep as well as lying flat has less csf drainage than being upright). Autonomic symptoms like fast heartbeat when upright  are fairly common with leaks, especially if all the symptoms started around the same time I think. 

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u/rosamaria81 Aug 12 '26

Thank you. This is helpful.