I was diagnosed with idiopathic intracranial hypertension, too much pressure in my brain, last summer, after a hospitalization. Thankfully I didn’t have papilledema (I’m never sure I spell that right), swelling that puts pressure on the optic nerve and can cause blindness, which was a relief, but it was still scary and confusing. At that point it was labeled “idiopathic,” meaning no clear cause, and I was left trying to manage symptoms without really understanding why this was happening.
They told me to lose weight, put me on diamox and took me off it 3 times, now I’m on topomax, and my headaches have lessened but I still am living with a constant feeling of pressure in my head and headaches ranging in severity between a 2 and a 6 all the freaking time… And I have severe brain fog, especially when stressed which can contribute.
I ended up going to a very expensive neurologist who knows Ehlers Danlos Syndrome because I wondered if that could tie into this, and among other things he had me check out, he wondered if I had venous Eagle syndrome, a rare syndrome where bones called the styloid processes press on your jugular and cause these symptoms. What do you know, a CTV showed that my styloid processes are elongated and pressing on my jugular veins on both sides. For the first time, it felt like I had an actual explanation. I joined Eagle syndrome groups, read everything I could, and mentally settled into the idea that this was finally the answer.
I then waited several months for an appointment with the Eagle syndrome specialist. There’s only one in my country, and he’s far from where I live, so I drove about three hours to see him, really expecting that visit to be about confirming the diagnosis and talking about next steps.
Instead, he told me he doesn’t think Eagle syndrome is the main issue at all. That Eagle Syndrome is based off of symptoms, not just lengths of bones of what it’s pressing on.
He said that while the jugular compression is there, its only mild to moderate, and what concerns him much more is something he sees as far more serious: severe stenosis of my transverse sigmoid sinuses, on both sides, which he explained meant that the veins in my brain are almst completely blocked. In his opinion, that narrowing in my brain is much more likely to be the cause of my symptoms than the external jugular compression. Hearing that was… a lot. It kind of pulled the rug out from under the narrative I had been holding onto and in some ways made me feel like a fraud and a liar telling people that I had Eagle syndrome, and also dealing with a whole new reality of what I had..
So now, in February (on the 17th), I’m scheduled for venography with pressure measurements. They’ll inject dye into my veins and measure pressure across different points to see how significant the narrowing actually is in terms of blood flow. Depending on what they find, they may hospitalize me immediately and place a stent in my brain.
Friends keep asking me if I’m okay with the idea of “brain surgery,” and honestly, that part isn’t even what’s bothering me most.
What I’m actually worried about is that I have a college final on February 24. I’m scared that I won’t be able to take it, or that I’ll take it while cognitively wrecked, or that this whole thing will derail the semester I’ve worked really hard for.
On top of that, February 18 is my 38th birthday, which means there’s a real chance I’ll be spending it in the hospital.
And because the hospital is three hours away from where I live, my local support system won’t really be able to visit me. I do have a few friends in that city, which helps, but it’s not the same. There’s also the uncertainty of not even knowing whether I’ll be hospitalized at all, which makes planning with my kids complicated and kind of stressful.
Then there’s also the whole “a stent in your brain is pretty serious, and if I am making too big of a deal out of things, because most of the time my headaches are manageable, and can’t I just keep living with what I have now? But this brain fog is debilitating. And maybe I’m just trying to downplay the seriousness. And narrowing of veins in my brain is a serious thing, even if I can deal with the headaches.
So that’s where things stand right now. A lot of uncertainty, a lot of waiting, and a strange mix of “this finally makes sense” alongside very practical worries about school, logistics, and life.
