Anyone here had a spontaneous (spinal) cerebrospinal fluid leak?

I've been fighting for months to get my insurance to cover an MRI with contrast and it's so hard to sit here in limbo.

Ftr I'm providing the following information for context, not so anyone here can tell me whether or not I have a CSF leak.

I've been diagnosed with hypermobility syndrome. My referrals to geneticists keep getting denied so I don't know more than that. I have good reasons to suspect a heritable connective tissue disorder other than hEDS but for now, hypermobility it is.

The first obvious thing I noticed was a dripping sound/sensation in the back of my head. It's a steady drip, only happens when I'm sitting at certain angles, goes away when I move from that angle and returns if I move back. Like a leaky faucet. It is most certainly not my heartbeat or anything like that. I think I first noticed this about 5 months ago.

I didn't think much of it other than "must be just another weird nonspecific symptom," until I got a minor bump on my head and it got worse, like "louder" and faster for the night.

I started getting positional headaches that I thought were my normal migraines, but I realized they're different. My migraines cause a constant severe pain, unaffected much by position but light becomes unbearable. These new headaches are sporadic pain that comes on suddenly. Sometimes it persists, other times it fades just to sneak back up as soon as I move the wrong way. It's an awful, severe, stabbing, throbbing pain mostly on the right side of my head. I can sometimes get it to calm down by laying down.

It sometimes hurts to move my head, especially nodding. This is true even when I don't already have a headache. Sometimes nodding or moving my head is what triggers a headache. It feels like things are being bumped around in a way they shouldn't be.

Also, my right eye started drifting outwards in a way that's visible to others. The optometrist said that it's intermittent exotropia and there's no reason for me to have it that's within his diagnostic capacity as an eye doctor, so he seconded the need for an MRI.

The optometrist seemed very alarmed at my symptoms and it was kind of refreshing to see someone express concern tbh.

Within the past month, I developed edema on the back of my neck, at the base of my skull. It's not like inflammation or infection, it literally just feels like fluid under my skin. My PCP is trying to fight my insurance to get an MRI covered for me. They deemed it not medically necessary 🫠🫠🫠

I know some people who would go to the emergency room for any one of these symptoms alone. I'm having a hard time understanding how urgent this is because of how casually doctors and my insurance treated it in the beginning. So, I guess I'm just living my life while I wait weeks to months for the denial/appeal process to go through. Sometimes I'll nod my head and it will cause a sharp pain and I wonder if I just gave myself brain damage.

Thanks for reading. I don't really know what I'm looking for here. If anyone has any wisdom from experience I would appreciate it, especially if you've already been through the diagnostic and treatment process.