I Got Lucky

More News About the Idiopathic Intracranial Hypertension

This is a follow up essay to “It’s Better than Going Blind,” which is about my battle with a rare brain-and-eye syndrome caused by an excess of cerebrospinal fluid.

I’ve been on the second medication, Topamax, for three months. It worked! I went back to Johns Hopkins and saw an ophthalmologist and the neuro-ophthalmologist who specializes in this syndrome. They shined their lights in my dilated eyes and agreed that the edema around my optic nerves was virtually gone. That implies the pressure in my skull had been normal for some time and nothing had been pressing on the back of my eyes.

Photo by Brands&People on Unsplash.

The long-term plan is for me to lose about 50 pounds. That is probably enough to cause the IIH to go into remission so that I can stop taking a medication for it. I’ve started Ozempic, and I’ll see the neuro-ophthalmologist again in March to check up on my progress.

But I’ve been thinking about the medication. It’s an anti-migraine medication. For about seven years I have suffered from “silent migraines.” I stopped getting the actual headache pain that I got with migraines since I was a teenager, but still I got the “aura” (the visual distortion that accompanies a migraine), along with the disorientation and weakness. These have caused me to miss work and made it difficult for me to travel, even to help out when my mother was dying. Since I’ve been on Topamax, I don’t get silent migraines anymore. Maybe I want to stay on it. That doesn’t mean I shouldn’t lose the weight and drive the IIH into remission, of course.

It does have side-effects, but I’m not too worried about them. I thought it was giving me bloody noses, but I stopped getting them, so probably not.

Now, don’t get the idea that my life is at last a bed of roses! It’s not. I was in pretty bad physical condition from seven years of silent migraines and five years of working from home, and then to top it off, the first medication I took, Diamox, absolutely knocked me on my butt. It tired me out so badly I couldn’t even walk around outside without a cane. After over two months on it, I was just jelly. I bounced back some when I switched to Topamax, but I’m still in miserable shape. I can’t walk more than about 500 feet without stopping to rest. And very important to me, I don’t have the arm strength to get myself up to a kneeling position if I fall on the floor. My legs are strong enough that I can get myself up from a kneeling position if I have something to hold on to, but if I can’t get to one, we have to call the fire department to help me up.

I enrolled in an online exercise program run by my health insurance company, but it didn’t seem to be a good fit, and there was no way I was going to practice getting off the floor without a real person to help me, so I went to my local physical therapist, whom I’d seen several times over the years for my back problems. He did an evaluation, and his recommendation was to get home PT.

To do this my primary care physician had to prescribe it and a provider had to get an authorization from my insurance company. It took a little searching and jiggling, but I finally got three visits approved, with five more added on later.

I was making good progress with the first four visits, when a minor calamity struck: I got influenza A. So, I’m going to have to delay my sessions by ten days or so while I recover. I don’t have the energy needed to do my exercises on my own—not yet, but I will. Right now, I’m just sitting in front of my computer sniffling and feeling tired. But I do feel better today than I did yesterday, so things are looking up.

And I’m not going blind.