PNES packing

It’s summertime and that means for a lot of people it’s time to go on vacation. It doesn’t matter if it is only for 2 days or for 4 weeks, everyone needs to pack. Going on a trip in your home country or even a foreign country can be exciting for everyone. For people with PNES it can bring some sleepless nights and a lot of worrying about what happens when they get an attack while traveling. Still, I believe this shouldn’t stop you from exploring the world and having the time of your life.

Today I will share with you some essential items I bring when I travel. These items are to make my traveling as smooth as possible so I shouldn’t have to worry too much.

health declaration
This is the most important document, besides your passport, to carry with you while traveling but also when you’re at home. It explains that you have PNES and what bystanders should do. It also carries your name, date of birth and name and telephone number of your doctor. Since I live in Europe my declarations are translated in Dutch, English, German, French and Spanish. I have several copies and when I am traveling I always have one in my hand luggage and one in my suitcase. My boyfriend has one in his pocket. This declaration really can prevent you from ending up in a hospital. Because even though my boyfriend or family member always explain that I don’t need an ambulance, some bystanders might not trust it and want to call one anyway. Showing this declaration often gives them proof that it’s ok and the seizure is a familiar phenomenon. I discovered that especially with flying this can come in handy since one of the first times my attacks got really bad I was in an airplane and the pilot wanted to make an emergency landing because they didn’t trust the situation. This however, is totally unnecessary and a declaration will often prevent this to happen. My declarations are all plasticized so water or any other dirt can’t damage them.

SOS bracelet
When you celebrate you’re vacation in a tropical place you might want to swim. For people with PNES this requires some safety measures. Therefore, I always wear a SOS bracelet. In this bracelet there is a little piece of water resistance paper containing essential health information. I wrote down my full name, my health condition (PNES) and telephone numbers on it. It says ‘non epileptic seizures, looks like epilepsy but it’s not, no medication, call family member: 00316…. ‘
You also can buy a SOS necklace or a watch the only problem with the necklace is that when you get a seizure and you fall on the floor, the necklace will fall on your back and bystanders might not see it. That’s why I have chosen the bracelet. You can purchase these SOS jewelry at all jewelry stores.

These two items are the most important ones to bring when you’re traveling but there are some others that can make traveling easier once you had an attack and your muscles are sore.

Some vitamins I always bring are magnesium and zinc. I have discovered they are extremely helpful for sore muscles and I take them almost every day.

muscle cream
Once the moment is there and you unfortunately had an attack while celebrating vacation you might want to have a cream for your muscles that either gets really hot or really cold. This can prevent you from becoming too stiff. You can get these creams at regular drug stores.

If you really have a lot of pain don’t hesitate to take a painkiller once in a while. I believe that when you’re on vacation you must prevent yourself from feeling miserable and sometimes a simple painkiller can be the solution for that.

When I am traveling I get tired really quickly. People with PNES all know what happens when you get too tired.. That’s why I always carry earplugs in my hand luggage. Either to get some sleep in the plane or car, or to sleep well in a noisy hotel and wake up fresh and rested the day after. These buddies saved me from getting exhausted a couple of times already! Especially after an exhausting seizure, it’s essential to get your rest.

When you go well prepared on a trip, you’ll stress less and can fully enjoy your vacation! Don’t let PNES stop you from doing fun things! Have a great summer!


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