Update On My Brain Pain… And Vision Issues

I’m in pain, if you haven’t figured it out from the title of this post and this picture…. And this is both a vent and an update.

I mentioned like two weeks ago that I was diagnosed with idiopathic intracranial hypertension and hospitalized. (For a more thorough explanation of what it is, see that post.) 

I told them straight out that they needed to release me after 5 days there, since I was going to Malta 2 days later, but the trip was canceled for reasons beyond my control, but in the end it was a good thing since I haven’t been feeling well enough to go, and I got my money back for the most part.

Because I wasn’t feeling well and was supposed to rest, my community made a meal train for me, and it’s been so helpful.

It’s been a few days since then, and I wanted to update you.

I’m in pain. Still.

A quick summary:

I got a headache 19 days ago, had a CTV (CT of the veins in my head) with contrast 18 days ago (pre-planned), and ended up in the ER 16 days ago. They did a lumbar puncture 15 days ago, I was hospitalized for 5 days, and put on medication for IIH. Since then, I’ve had dizziness when upright, likely from a cerebrospinal fluid leak caused by the lumbar puncture. I’ve had a headache this entire time.

I’ve never been diagnosed with migraines. These aren’t migraines. They feel like there’s a balloon inside my head being inflated—just constant pressure (the literal definition of hypertension). In the past, I’d sometimes wake up in the middle of the night with headaches, but getting up and drinking always helped. I assumed it was dehydration, but it was actually the upright posture that relieved it.

A week after the lumbar puncture—8 days after I was first hospitalized—I went back to the ER, this time to a different hospital in the same system so my records were available. I went because the head neurologist at the first hospital had difficulty with my spinal tap, and I figured the other might have someone more experienced.

While I was there, they tested me. Despite the visual disturbances (more on that in a bit) and a prior diagnosis of IIH, the neurologist there decided I don’t actually have IIH—just “some pressure in my skull” (which is literally what IIH means). My lumbar puncture pressure was 29, which is diagnostic. But because I don’t have swelling of the optic nerve—a symptom that often accompanies IIH—he dismissed the diagnosis. He didn’t seem to know that with EDS, it’s common to have high intracranial pressure without optic nerve swelling. So he revoked my diagnosis, took me off the medication, did a CT, said there was no visible CSF leak, and told me to just rest.

So I’ve been resting. I still have to leave the house sometimes—mostly for ER visits, doctor appointments, and physical therapy—and I feel guilty about getting a meal train if I’m doing things, but my friends keep reminding me that’s all the more reason to get support, not less.

I’ve been trying to lie down as much as possible, but that’s hard for me. And it hurts. My body was in so much pain I couldn’t lie down comfortably in most positions, and needed physical therapy just so I could rest more easily. One session wasn’t enough—I had PT both Wednesday and Thursday, and another session is scheduled for Sunday. EDS needs movement; CSF leaks need rest. Rest takes priority right now, so I’m paying for PT just so I can lie down without hurting.

But actual rest is difficult because of the headaches. I never thought of myself as a light sleeper, and I usually need tons of sleep, but now I’m having trouble falling asleep and wake up after only a few hours. I’m seriously sleep-deprived and have to nap during the day to make up for it.

The pain level isn’t extreme—maybe between a 3.5 and 5, with occasional spikes to 6 (according to this pain chart). But the fact that it’s constant is what really wears me down.

I made an appointment with the one specialist in the country who deals with neurology, POTS, and EDS. His next available slot is July 31, so it’ll be a while before I get answers.

I also booked an MRI of my brain, as recommended by the hospital. The appointment I got is at the end of August, but I’d really prefer to have the MRI before seeing the neurologist—and ideally, to already have results by then. I asked my HMO if they could push it up as an emergency, and they said they’ll try. (The MRI hospital is affiliated with the HMO.)

I’ve also been experiencing vision disturbances, which I hadn’t connected to this issue until I looked into the symptoms of intracranial hypertension. In addition to optic nerve pressure, IIH can cause other eye issues, and at least some of what I’m dealing with fits that.

Here are the vision issues I’ve been having:

• Blurry vision, especially when looking at the computer or phone. I need the screen brightness turned all the way up—so high that the colors are off—just to be able to read. The screens also seem to have a sort of sparky, colorful rainbow halo around them.
• When the optometrist checks my eyes, I often see a faint colorful outline around the letters, and I have trouble telling which color lens is clearer. It also takes a minute or two after each lens change before I can focus and compare.
• I’m having general trouble focusing. I usually assume this means I need a new glasses prescription, but a few months ago, the eye doctor said my current prescription was too strong—this could explain why.
• I’ve also started seeing double when looking at letters at certain distances. I noticed it first on the distance eye chart during my last ER visit, and now I see double even when looking at a book up close.
• Letters also appear to have faint drop shadows.