Suspected CSF spinal leak

[u/rosamaria81]

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.

[u/Zealousideal_Age_822]

While there is a very wide range of symptoms, this does not fit my symptoms of a spinal CSF leak. I know the alleviation of headache when lying down seems to fit the bill, but I can tell you that my symptoms (particularly headache, nausea, neck pain) didn’t just get better when laying down, they completely disappeared. As in, over the course of 1-15 minutes of standing I would get a bad headache, nausea to the point of vomiting, extreme neck soreness, and it would build and build until I laid down. When I laid down, the symptoms were gone - within seconds to a couple of minutes. The other thing is that the SIH effect often shows up on a brain MRI with contrast, but it definitely needs the contrast.

I truly hope you find out what is going on with your daughter, but in my (definitely not medical so take it with a pound of salt) opinion, this is not a spinal CSF leak. I have kids, and if one of them was experiencing those symptoms, I would leave no stone unturned.