What people swimming with people with epilepsy should know

If you are planning on going swimming and you have epilepsy, there is safety advice.  Some is advice that you really should follow anyway… others are “epilepsy specific”

BEFORE YOU SWIM, CONTACT YOUR DOCTOR TO MAKE SURE HE OR SHE DOESN’T HAVE AN ISSUE WITH YOU SWIMMING!!!
Amandya was told that she can’t swim alone or bath alone (shower is okay… but bath isn’t always).

Your swimming safety…

• Never swim alone.  No one ever should, but if you have a history of seizures, this is particularly important…

• If there is a lifeguard or pool supervisor present, make them aware of your epilepsy.  If you are just with people you know, make sure that you let them know you have epilepsy.  Yeah, yeah, this is the no fun part of the whole deal if you have been keeping it a secret, but it matters.  It really REALLY matters.

• If there’s no qualified lifeguard present, don’t swim deeper than the shoulder height of the person who’s swimming with you.  If you read the next section… it should become obvious why… but think about it.  If you need to be pulled out of the deep water, you need to have your head supported out of the water so you can breathe through your seizure.  If the people you are with aren’t tall enough to keep your head out of  the water, you could easily drown.

• Make sure that your companion knows what to do if you have a seizure and is strong enough to help you. It’s important that whoever you are with has a clue on what to do if you seize while you are in the water and that they are capable of doing what is necessary.  It needs, also, to be someone you know you can trust with your life.

• Practise what to do if you have a seizure with your companion.  Again, not really something that is “fun” because it takes a lot of the spontaneity out of the day… but again… it matters.  Not that someone who is totally unfamiliar with what to do will fail miserably, quite the contrary, someone who doesn’t know and doesn’t even REALLY understand can be the one to save your life (we are walking proof of this) but it helps.

• Swimming in the sea, lakes or very cold water is dangerous so should be avoided.  Here, you need to talk in detail with your doctor to make sure what is right and wrong for you….
• Don’t swim if you are feeling unwell.  Again… this is something that should be common sense to everyone, but is particularly important for people with seizure disorders.  If you are feeling unwell, it is possible that there is a seizure coming on.  Even if there isn’t… if you are feeling unwell, you could spread viruses or bacteria to others swimming with you.
• Avoid overcrowded situations as it might be difficult for others to notice if you have a seizure.  Busy pools always make me feel nervous on a good day… and having barely enough room to stand in the water is so not fun… but when you have epilepsy and you need to know that a life guard, if there is one, or a friend, is going to be able to FIND you at all let alone see you if you get into trouble… that is a big chance.

Now that you’ve looked at how to think about swimming (for you and for your friends) with epilepsy… now, most important for those who are swimming with you or those who are there to watch our for you…this is what to consider when swimming (or looking after a swimmer) with someone with epilepsy.

It is sometimes helpful to understand the kind of seizure that your friend or family member has… so you know what you are looking for.

Dealing with a seizure that occurs in the water (pool… creek… lake… bath tub… )

Tonic-clonic seizures

These are the kind of seizures that Amandya has…

When you see the seizure in process…

• From behind, tilt the person’s head up so it is out of the water… lean their head back on your shoulder… supporting their weight, whatever weight there is to support, while they are unable to help themselves.  While you are supporting them, if it is in any way possible, try to get them into more shallow water so it is easier to keep their head out of the water.
In the water it is not any different from out of the water… don’t try to restrain the movements of the person seizing, and don’t put anything (ESPECIALLY YOUR FINGERS OR HANDS) in their mouth.  They may bite their tongue (Amandya does with every seizure) but they won’t swallow their tongue (it isn’t possible) but if you put anything in their mouth, they will either injure you (possibly badly) or break their teeth on anything you put in their mouth.
Once any jerking or thrashing has stopped, move them to dry land and place them on their side while they recover.  Ever after the thrashing is done, until they can coherently talk to you, they still need to be supervised.  And if possible, throw a towel or blanket or robe or even a t-shirt over them to allow them to maintain some level of privacy as they recover because they won’t be coherent to protect their own privacy… and it is not totally uncommon for some people with seizures to go through trying to undress themselves as they are coming out of a seizure.
Remember to stay with them because they could have another seizure and end up back in the water accidentally.  And if you have never witnessed one of their seizures don’t be embarrassed at having witnessed it, don’t hesitate to ask questions, and remember this is something they deal with, often on a daily basis.

Absence and partial seizures

Absence and partial seizures typically won’t need emergency action, and you may not even be totally sure that is what is happening, still, if you see anything odd, care should be taken with the person involved.  Make sure that they don’t sink or that their face doesn’t go into the water.  Guide them out of deeper water or (as with the complex partial) hold their head out of the water until the seizure has completed. Once they have recovered from the seizure check with them to see if you can help them to get out of the water.  They may still be disoriented or tired or confused.  Stay with them and make sure that they are okay.

Calling 911

I know that the emergency room doesn’t want to see Amandya.  There isn’t anything they can do for her at this point.  We have a diagnosis.  The doctor is there for her (EVERY single time we seize, we call and adjust the meds, but simple seizures don’t warrant a trip to the emergency room.

That said, there are times when you need to either call the ambulance or deliver the person to the emergency room.

If the person has swallowed or breathed in water, they should go to be seen by the emergency room people.

As with a seizure on dry land, if multiple seizures occur back to back without the person regaining consciousness, if the seizure lasts longer than is “typical” or if the seizure lasts more than 5 minutes they need to be transported to the emergency room.  This isn’t anything special to do with swimming, or being in the water, these are often the general rules for calling 911 for a seizure.  The same is true if they injure themselves in the process of the seizure (if they hit their head for example).

Alerting the lifeguards or security people at the pool

Again… not something that you want to think about or that you want to make a big deal out of, but if the seizure causes the person to loose control of their bowels, you need to alert the people in charge of maintaining the pool because the pool will need to be cleaned to protect everyone (including you and your friends and family) from illness that may occur due to contamination.

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9 Comments (+add yours?)

  1. Kaitlin's mom
    Jun 14, 2010 @ 12:06:38

    Love the info you are sharing. 🙂

    Reply

  2. Trackback: 2010 in review « A Day Like No Other
  3. Helena
    May 10, 2012 @ 15:46:43

    Thanks for the advise. My 20 year old daughter wants to come swimming with me and I needed to know what to do if she had a seizure in the pool. Her Dr is trying to increase her medication gradually. But so far she is still having fits. She had three within 3 hours the other saturday. At least I know what the symptons are now but she is unaware that any thing is wrong with her.

    Reply

    • alicorndreams
      May 10, 2012 @ 16:48:41

      You (or someone who goes with you) has to be able to be able to hold her head out of the water during a seizure. You can’t rely on a lifeguard to be where you need them to be when you need them. Whoever swims with her needs to be tall enough to make sure her head is out of the water, close enough to her to make sure they are there WHENEVER the seizure occurs and strong enough to hold here through whatever her seizures are. If they are tonic clonic (grand mal) that might be difficult… thrashing in the water.
      I was lucky, Amandya’s friend is kind of buff and was RIGHT beside her when it happened. Because people with epilepsy have no control and often no warning of when the seizure is going to occur, or that it is starting, they can’t alert anyone. Being vigilant is critical.
      Good luck with the meds. I know it took a lot of trial and error before we really got a handle on Amandya’s meds and got her under control.
      Hugs

      Reply

  4. barbara
    Apr 21, 2013 @ 05:20:09

    Thank you very much. Your info really helped me. Hugs

    Reply

  5. Sam
    May 02, 2013 @ 09:21:02

    Thank you for providing the information. I have tonic-clonic seizures, my doctor game me the go ahead to swim and I’ve been trying to find some thing like this. To pass along to my friends, who will be swimming with me.

    Reply

    • alicorndreams
      May 02, 2013 @ 09:24:59

      I’m glad I could help! Amandya was really scared to swim for a long time after the in the pool seizure. She’s more confident now that someone who she knows understands is there with her

      Reply

  6. Hugo Leonardo De Andrade Correa
    Sep 02, 2013 @ 19:10:18

    I have nocturnal epilepsy since I was 16 sometimes happens during the day if I lack of sleep, now I am 22, it happens every two months frequency, I take now topiramate as medicine, I do Ride my Bike, and I do Swim OPEN water, I do not follow any of there safety advices, and so far I had never had any case of convulsion during practicing a sport. I know IF have in water. . . I will have it one time and never again, because there will be no one near to help. As I train on my own.
    I have own some competitions and several medals and I am very proud of it.
    I would not recommend swim open water deep alone unless you happen to have while sleeping seizure only. But have fun in the Pool and let someone around now you may need help.
    And Yes… I am afraid, I try not to panic. I had stopped for a while but I’m now coming back to open water swimming.
    Sports are good for all of us! ! !

    Reply

    • alicorndreams
      Sep 03, 2013 @ 03:28:36

      I hope you always are as lucky as you have been so far! The scariest day in my life was the day that Amandya seized in the pool. The proudest day in recent memory was the day that she finished her first half marathon… no training… and was for the most part sedate for months during school and she finished in a four minute mile.

      Sports ARE good for everyone!

      Reply

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