{"id":27882,"date":"2020-01-14T00:00:00","date_gmt":"2020-01-14T05:00:00","guid":{"rendered":"https:\/\/www.hydroassoc.org\/hydrocephalus-day-to-day\/"},"modified":"2024-10-11T14:15:19","modified_gmt":"2024-10-11T18:15:19","slug":"hydrocephalus-day-to-day","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/hydrocephalus-day-to-day\/","title":{"rendered":"The Day-to-Day of Headaches and Hydrocephalus"},"content":{"rendered":"

\"DanBy Dan Kricke, Guest Blogger<\/em><\/h4>\r\n

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?<\/p>\r\n

Welcome to life with hydrocephalus<\/a><\/strong>. For me, more than anything else, the uncertainty around the symptoms<\/a><\/strong> can be the most frustrating part of the condition.<\/p>\r\n

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<\/a><\/strong> 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.<\/p>\r\n

As I grow older I feel like I\u2019ve become more in tune with my body, able to figure out whether an illness is just a run-of-the-mill \u2018everyone gets sick, sometimes\u2019 thing, or if it\u2019s hydrocephalus-related. Of course, that doesn\u2019t stop my wife from worrying and wanting to drive me to the hospital at the first sign of trouble. That said, although I\u2019m getting better at telling the difference between sick and \u201chydrocephalus sick,\u201d I also believe my head has become more sensitive to certain things.<\/p>\r\n

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<\/strong>. It wasn\u2019t 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\u2019s something more serious.<\/p>\r\n

In the time since the University of Chicago wrote their feature on me, I\u2019ve 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<\/strong>. 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\u2019t the only one dealing with them, but it also made me realize that there\u2019s no easy path with hydrocephalus.<\/p>\r\n

As those of us with hydrocephalus get older, we\u2019re going to have our good days and our bad days. There\u2019s no magic cure for the condition<\/strong> yet so we, and the people around us, need to be mindful that it doesn\u2019t take much to disrupt our equilibrium. I\u2019ve been out having a perfectly nice time with friends when a headache will hit and I\u2019ve had to excuse myself. I\u2019ve 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.\u00a0 I\u2019m sure for some people, it seems like I\u2019m flaking out of hanging out or that I don\u2019t want to work.<\/p>\r\n

I\u2019m of two minds on how to deal with this. On one hand, you can\u2019t spend your whole life explaining hydrocephalus to everyone you come in contact with. It\u2019s impractical and as I\u2019ve said before, many people have other conditions or issues they deal with on a daily basis, too. We\u2019re all just doing our best to live our lives. But on the other hand, it\u2019s our responsibility as people with hydrocephalus to make sure that people whose opinions matter to us know what we\u2019re dealing with. I can\u2019t just start having mysterious headaches and expect my boss to sympathize if I don\u2019t provide any context for the headaches. Similarly, my wife has experienced firsthand how hydrocephalus can bring me down. She\u2019s a lifesaver when it comes to explaining my headaches to other people if I have to leave a group get-together suddenly.<\/p>\r\n

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\u2019re 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\u2019t understand what we\u2019re 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.<\/p>\r\n

I\u2019d 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!<\/p>\r\n

View our Headaches and Hydrocephalus<\/a> page.<\/p>\r\n

Watch our Ask the Expert video series with Dr. Marion Walker.<\/a><\/p>\r\n

Watch our Adult Ask the Expert Series: Headaches and Hydrocephalus<\/a>.<\/p>\r\n\r\n

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