Rare Disease and Summer Heat? Not a Good Combo. Check Out These Hot Tips!

July 14, 2013

By Janet Mills

It’s summertime and the living is…sometimes difficult. It can be so terribly hot. Not just the hot we expect during the warmer months in whichever part of the world we live, but bordering on, hitting, or exceeding our levels of tolerance. Throw in uncomfortable amounts of humidity and we can feel utterly or dangerously miserable.

Many of us with rare diseases have issues with temperature extremes. I personally prefer temperatures in the 60s and 70s (Fahrenheit), while 90s and above can literally make me sick if I am exposed to them too long without relief. Temporarily, drinking plenty of water helps me, but ultimately I need to seek refuge with an air conditioner or hug a fan until I can cool down.

As a patient with the rare genetic disease CADASIL, extremes in temperature can cause sick headaches. If my head gets too warm, I feel throbbing pain, pressure, nausea, dizziness, and a host of other symptoms. Likewise, in the winter months, prolonged exposure to frigid conditions tightens the skin around my skull and causes the same painful issues.

Heat also saps my energy, making me feel lethargic and emotional. I take a daily anti-depressant to even out my moods and help with anxiety, and guess what? Those meds can make heat intolerance worse.

I recently found a webpage where many prescription and over-the-counter medications are listed as possibly causing heat sensitivity: (Remember that we should never start, change, or stop medications without our doctor’s approval.)

I have elected to continue on my medication and supplement regimen even during the hottest days of the year, with these measures in place I’ve come up with a few general tips for staying cool.

1)     I drink plenty of water and stay hydrated. Remember that even though a soda or sugary drink might seem tempting, it won’t keep you hydrated.

2)      I stay inside with my air conditioner or fan when possible. Remember that there are actually lots of places to beat the heat with air conditioning including libraries, the movies and the mall.

3)     I go for a swim or take a lukewarm shower—but remember to limit your outdoor time to morning or evening hours.

4)     I stay in the shade. Umbrellas are great, and wide-brimmed hats will help keep you from sunburns!

5)      Lastly, I listen to my body’s warning signs. If I’m feeling overheated, dehydrated, begin getting a headache or notice my skin starting to flush—I take the party inside!

Let’s safely enjoy our summer! For more info on summer heat safety check out the CDC’s guide to summer heat!

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