Dan Kricke, living with hydrocephalusBy Dan Kricke, Guest Blogger

When is a headache more than a headache? When do fatigue and vomiting go from a stomach bug or food poisoning to something that warrants a hospital visit?

Welcome to life with hydrocephalus. For me, more than anything else, the uncertainty around the symptoms can be the most frustrating part of the condition.

When I was younger and I would get the stomach flu, my head would eventually start hurting after a day of vomiting. And then the worry would be that the headache was the actual problem, that my shunt was malfunctioning and the vomiting was just a response. Everyone would keep a close eye on me and monitor my slightest change in temperature just to see, one way or another, whether we were going to pack a bag and head to the city to visit my neurosurgeon.

As I grow older I feel like I’ve become more in tune with my body, able to figure out whether an illness is just a run-of-the-mill ‘everyone gets sick, sometimes’ thing, or if it’s hydrocephalus-related. Of course, that doesn’t stop my wife from worrying and wanting to drive me to the hospital at the first sign of trouble. That said, although I’m getting better at telling the difference between sick and “hydrocephalus sick,” I also believe my head has become more sensitive to certain things.

When I was a kid and everyone would get excited for that one or two days in February that would be surprisingly mild out of nowhere, I was always a little more cautious. I loved the warm weather but the sharp change in temperature would often be accompanied by a slight pressure headache. It wasn’t very debilitating, but it made those surprisingly warm days just a little less fun. Now as an adult, those surprisingly warm days are sometimes even worse. Sometimes a quick change in temperature leaves me feeling like I have a terrible migraine and all I can do is lie down and either hope it passes or worry that it’s something more serious.

In the time since the University of Chicago wrote their feature on me, I’ve had a few people reach out to discuss living with hydrocephalus. One of the people who reached out was an adult who had been just recently diagnosed. I talked him through some things and was able to help ease a lot of his fears, I think, but the one thing we both had in common were those stupid weather headaches. It was comforting to know that I wasn’t the only one dealing with them, but it also made me realize that there’s no easy path with hydrocephalus.

As those of us with hydrocephalus get older, we’re going to have our good days and our bad days. There’s no magic cure for the condition yet so we, and the people around us, need to be mindful that it doesn’t take much to disrupt our equilibrium. I’ve been out having a perfectly nice time with friends when a headache will hit and I’ve had to excuse myself. I’ve also been at work, again, feeling perfectly fine and then suddenly my head is killing me, and the last thing I want to do is stare at a computer screen.  I’m sure for some people, it seems like I’m flaking out of hanging out or that I don’t want to work.

I’m of two minds on how to deal with this. On one hand, you can’t spend your whole life explaining hydrocephalus to everyone you come in contact with. It’s impractical and as I’ve said before, many people have other conditions or issues they deal with on a daily basis, too. We’re all just doing our best to live our lives. But on the other hand, it’s our responsibility as people with hydrocephalus to make sure that people whose opinions matter to us know what we’re dealing with. I can’t just start having mysterious headaches and expect my boss to sympathize if I don’t provide any context for the headaches. Similarly, my wife has experienced firsthand how hydrocephalus can bring me down. She’s a lifesaver when it comes to explaining my headaches to other people if I have to leave a group get-together suddenly.

We may always have hydrocephalus, and it may impact our lives in ways both subtle and much-less-so, but if we communicate how we’re being impacted, it will go a long way towards making our lives easier. Easier both internally as we worry less about judgment from someone who doesn’t understand what we’re going through, and externally, as people around us realize we can be counted on, but occasionally may struggle with headaches and other issues beyond our control.

I’d love to hear how everyone else deals with these surprise temporary headaches. Do you have a good way of explaining them to other people? And remember to use the hashtag #lifewithhydrocephalus when you post on social media, sharing a story, moment, or advice on living with the condition. Then we can all find each other!

Read our Headaches and Hydrocephalus article.

Watch our Ask the Expert video series with Dr. Marion Walker.

Watch our Adult Ask the Expert Series: Headaches and Hydrocephalus.