I was unsure since I still had those mild symptoms, and because the doctor said to keep lying down until I'm completely symptom free that's of course what I did.Īnd exactly two weeks after the ER visit I actually was symptom free. I still felt kinda woozy in my head and had a bit of a headache, but that was it. 4 more days I was wondering if I was actually self healed. I was still symptomatic, but I was clearly getting better. The fever was gone again, the cognitive issues less noticeable, and I managed to walk into another room without thinking I was gonna throw up. And after 5 days I started to feel a bit better. I lied in bed, slept a lot, cried in pain, and drank so much coffee I started not liking the taste anymore (I'm a huge coffee lover, so that was surprising). With all the stories I've read of other people here I feel incredibly lucky that I was seen by a doctor who took my symptoms seriously and properly diagnosed me. I should come back if my symptoms get worse or don't improve within a week and then we'd talk about the next steps. Instead I was ordered strict bed rest, caffeine pills (200mg caffeine three times a day) and told to drink a lot of coffee and fluids in general. The doctor explained to me that a CSF leak doesn't show on a normal MRI and it would need a Myelography to actually see it, which he wouldn't order now since it's more invasive. He ordered a MRI to exclude menegitis or a brain bleed. I was seen by a neurologist who did a thorough examination and agreed that everything sounds like a CSF leak. I was already suspecting a CSF leak, because when I got my EDS diagnosis I was told that an orthostatic headache was something to look out for. I now also had a pulsating tinnitus, blurry vision, balance issues, couldn't think of the right words when talking and also had troubles processing what others were saying. On the next day my symptoms were even worse. In the evening of the same day I was already nauseas, dizzy, experienced brainfog and had trouble forming clear sentences, I also started running a fever. ![]() The pain was based in the back of my head, where the neck meets the skull, and it spread down my neck and shoulders. I took some of my heavier pain medication which slightly relieved the pain. When I got up for lunch it quickly got extremely bad. ![]() I lied down and retard a bit, noticing that it was barely there when I was lying down. Either way, the next day in the morning I started developing a headache. I don't know if this was just a coincidence or if it might be related to the leak. My neck was extremely stiff and painful for the rest of the day. In mid February I woke up with my neck twisted in a very weird and painful position. ![]() I want to share my experience with spontaneous intracranial hypotension/CSF leak and self healing, just in case it helps anyone.
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