I’m still pretty new to this. I was diagnosed on accident in 2021. As I’m sure most of you know, it was hard to get anyone to listen when I felt like something was wrong. Even harder getting any kind of help or answers once I was told I have chiari. It was quickly brushed off as no big deal. The ONLY reason I even knew what it was, is because my younger brother has had it his whole life. The reason I got diagnosed to begin with, i had a crippling headache for weeks. Throwing up, noise felt like glass in my ears, any movement and I felt like I was going to fall, any bit of light made me feel like my eyes were going to burst, it got to the point where I needed help walking to to the bathroom. I went to the ER a total of 5 times in the span of like 3 weeks to no avail. I finally got referred to see a neurologist. After my symptoms, and an additional fever I was starting to run, he was terrified I had meningitis. They transferred me over to the ER for a spinal tap. I was negative for meningitis. But my opening pressure was 42, leading me to a diagnosis of idiopathic Intracranial Hypertension. With the hospital being unfamiliar with this and truthfully, unequipped, they sent me to yet ANOTHER hospital where I got my first ever MRI. Knowing what my brother has, I asked them if that was possible/present on mine. Then and only then did they go back, check, and confirm. They said I had a 5mm herniation. But said it was not a big deal. And I know people have much more severe herniations. They told me all of my symptoms were due to the IIH. and once they gave me the spinal tap, my symptoms had almost completely disappeared. So I believed all of that. However, here I am. 5 years later. I had another IIH flare at the beginning of 2025 and nothing has been calm since. I was on diamox for a very long year. And it helped for a while. But I started to feel super lightheaded and dizzy with it. I thought maybe it was time to stop. So I did. And I felt better for a few weeks. But the past 2 months have been agony. Stiff neck, headaches, pressure in the back of my head as well as my eyeballs, tingling in my fingers, face, & toes. Feeling like I’m hanging upside down 24/7. Feeling like I’m going to pass out most of the day. Heart flutters. Terrible anxiety, feeling like I’m dying or my body is shutting down.
I guess I just need to know what to do. I feel like no one understands, and for the most part, is sick of me constantly talking about being scared of my health.
I also don’t know how to differentiate the chiari symptoms from the IIH. anyone ever been here before? Sorry for the long rant. Thank you in advance!