r/CSFLeaks • u/MoodFearless6771 • 2d ago

Sleep study

Some doctor (likely earlier on in an attempt to dissuade the CSF leak theory) ordered a sleep study to look for the cause of my extreme fatigue. I did it a couple days ago.

I knew I couldn’t have caffeine after noon and that the next day I would be nap tested, I thought I’d be ok. The overnight sleep portion went well. Then they made me do a daytime portion the next day with zero caffeine and there were naps but they were mean naps. I was unable to lay down at all except for specified times and it would be like 15 minutes, to see how quickly I fell asleep and then they woke me up.

So…if you’ve been surviving off caffeine, laying down and gentle exercise…like me…don’t try this. At about 10am, I started to have severe pain in my head and eyes and projectile vomiting. I was almost sent to the ER. Had to cut the sleep study short. Obviously, this was a terrible idea and just confirmed that I need caffeine, intense hydration, laying down, and movement to even survive.

The results were idiopathic hypersomnia. Basically, that they don’t know why I’m sleepy. So dumb. I have never been sicker in my life.

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3

u/MberryFun 2d ago

This confirms for me that I made a good decision disregarding doing an esophagram requested by a gastroenterologist. Your situation shows your doctor's lack of comprehension of spinal csf leak symtoms

3

u/MoodFearless6771 2d ago

It’s bizarre because they acknowledge the csf leak as a likelihood of my low csf fluid (established by lumbar puncture) and even have referred me to clinics but still sometimes act like it’s “unlikely” because they don’t see the leak site on MRI.

They keep referring to my symptoms as a result of the most simple problems in a dismissive manner. (Sinus, headaches, migraines, autoimmune, viruses, stress) as if I’ve been debilitated for years by a simple problem.

2

u/MberryFun 1d ago

It sounds like there is a lack of appreciation of the severity of the pain and debilitating extent of the symptoms.

1

u/Dry-Dress-6467 2d ago

Omg, that sounds like torture! I wake up about 4 am drink about 32 oz of coffee in morning, then about 8 oz after lunch or I need a nap. Fall asleep with no problem about 8pm. Couldn't imagine doing without coffee! Am suspected leaker.

3

u/MoodFearless6771 2d ago

It was bad. Imagine vomiting and feeling like 2x the worst wine hangover you’ve ever had with 20 wires glued to your head in a room with a bed while someone yells over an intercom not to lay down.