Swimming?

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JackieFruh

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My son was just diagnosed with epilepsy. He has had two tonic-clonic seizures, both in the morning after late nights playing video games. Is that what's triggering them? I don't know, I wish I did. The second one was just on Thanksgiving. Prior to that, we were really hoping that first seizure was the only one he'd have in life.

Before his first seizure, and still, he is very athletic. He is a great swimmer and runner. Can he still swim? Do any of you have any experience continuing to swim with epilepsy?

The neurologist put him on Topomax in the beginning, after the first seizure. After the second seizure, his doubled the dose to 200 mg/day. Any experiences with Topomax?

I know I threw a lot in here but...hoping for something uplifting, encouraging.

We are all just adjusting to this reality, and I want to help my son stay positive, and normal, and beautiful, and wonderful. He is such a sweet, kind, and thoughtful person!
 
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Thank you George! That does help. I want to but feel hesitant to place faith in the idea that if he had just gone to bed early the night before, taken his medicine, he would not have had a seizure. Is it really that easy?
 
JackieFruh said:
Thank you George! That does help. I want to but feel hesitant to place faith in the idea that if he had just gone to bed early the night before, taken his medicine, he would not have had a seizure. Is it really that easy?
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Sadly I don't think just going to bed early and taking his medication will be a 100% guarantee... There's no known cure for it and doctors still don't 100% why.

Oh ya and don't be afraid to switch medications until your son finds one that he likes. Everyone reacts differently to the medication so side effects for drug A may suck for person 1 but person 2 is fine with it :)
 
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So far so good with Topomax, as far as side-effects. The dr. has brought up Depakote a couple of times, but every time we just end up staying with Topomax. I hope this increased dosage controls the seizures. But...is it common for all seizures to be completely controlled by any medication? Or are breakthrough seizures the norm?
 
JackieFruh said:
So far so good with Topomax, as far as side-effects. The dr. has brought up Depakote a couple of times, but every time we just end up staying with Topomax. I hope this increased dosage controls the seizures. But...is it common for all seizures to be completely controlled by any medication? Or are breakthrough seizures the norm?
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I'm not sure. I'm a mild case and was doing fine for 2+ year with no change in medication or dosage but had a breakthrough seizure this year. Doctors had no clue why it happened and they ran a ton of tests to see if my brain or body changed but it came back normal.

I kind of feel now that my doctors are more "guess" and "hope" than "concrete"?? But it's due to the fact that cause of epilepsy is still unknown
 
JackieFruh

I do not think that playing all those video games for long periods is good for anybody, could it be a trigger, yes is the simple answer but this does not mean he stop and that is it, it means what you have to do is regulate the time spent playing. You would want to ask his doctor and neurologist about things he cannot do but no I would not recommended swimming for the simple reason of the risk at the moment, it may turn out that he can never swim again but that is for his doctor and neurologist. I enjoy swimming but I gave it up, it was the lesser of two evils.

There are a lot of people who get on very well with topamax but each and everyone is different, what suits me may not suit you or what suits my child may not suit your child. It is a question of time to find a drug that suits you and helps control your seizures. In saying that you might find that the Topamax does not suit then you change, if you are worried about the dose, in my opinion and only my opinion 200 mg/day is not much, it may go up to 400 mg/day if I am not mistaken but I am not a doctor.

You want something uplifting, encouraging, well first your child is a normal person and will grow up normal, ok he may have some restrictions in life like not swimming but otherwise he will be fine. Second he has a loving family who are taking care of him and doing all they can. None of this is easy on you and its easy for me to say but you have to hang in there.

Just because he has been diagnosed with this does not make him different. Would you consider him different if he was diagnosed being deaf.
 
Someone should not swim if seizures are still considered uncontrolled. It might be safe to apply driving rules to swimming though; eg. when seizures are controlled for 6 months or a year perhaps consider swimming - but only in shallow water at a public facility with a lifeguard and with a buddy immediately close by who is strong enough to keep your son's head above water.
As George mentioned, adequate rest is important. Occasionally exercise can make seizures worse (exercise is considered a "stress" as well as things like school), so you may want to help your son moderate his degree of exercise for a while until his seizures are under better control, and then gradually increase his level of exercise again to see what he can tolerate.
 
I have never been told not to swim because I'm uncontrolled.My dh has been there when I have had sz's in the pool.I will not stop swimming all together.
knowone should swim alone, they should always have someone with them.
My neuro has never told me I shouldn't swim I use my head and don't swim by myself.
 
Wow. Guess and hope is right. I know there are no certainties in this life, but you just want to take certain things for granted, like not falling down & choking in the middle of doing nothing at all. What are some of your tools for keeping a positive outlook?
 
JackieFruh said:
Wow. Guess and hope is right. I know there are no certainties in this life, but you just want to take certain things for granted, like not falling down & choking in the middle of doing nothing at all. What are some of your tools for keeping a positive outlook?
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Have loving parents!
 
Fedup said:
JackieFruh

I do not think that playing all those video games for long periods is good for anybody, could it be a trigger, yes is the simple answer but this does not mean he stop and that is it, it means what you have to do is regulate the time spent playing. You would want to ask his doctor and neurologist about things he cannot do but no I would not recommended swimming for the simple reason of the risk at the moment, it may turn out that he can never swim again but that is for his doctor and neurologist. I enjoy swimming but I gave it up, it was the lesser of two evils.

There are a lot of people who get on very well with topamax but each and everyone is different, what suits me may not suit you or what suits my child may not suit your child. It is a question of time to find a drug that suits you and helps control your seizures. In saying that you might find that the Topamax does not suit then you change, if you are worried about the dose, in my opinion and only my opinion 200 mg/day is not much, it may go up to 400 mg/day if I am not mistaken but I am not a doctor.

You want something uplifting, encouraging, well first your child is a normal person and will grow up normal, ok he may have some restrictions in life like not swimming but otherwise he will be fine. Second he has a loving family who are taking care of him and doing all they can. None of this is easy on you and its easy for me to say but you have to hang in there.

Just because he has been diagnosed with this does not make him different. Would you consider him different if he was diagnosed being deaf.
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Thank you fedup. Yes, we will wait to see what the dr. says about swimming. I just hate that he has to have things like swimming subtracted from the things he can do & enjoy. But, such is life!
 
Belinda5000 said:
I have never been told not to swim because I'm uncontrolled.My dh has been there when I have had sz's in the pool.I will not stop swimming all together.
knowone should swim alone, they should always have someone with them.
My neuro has never told me I shouldn't swim I use my head and don't swim by myself.
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Interesting, Belinda! When you have had seizures in the pool, have you ever had to had CPR or be taken to the emergency room? I feel like even if I were swimming in the pool with my son, or sitting next to the pool, I could easily miss the beginning of a seizure, and he might take in a bunch of water before I got him to safety.
 
I disagree just because your not controlled is no reason for you not to swim.JUst don't be an idiot an go swimmingby yourself, anyone who goes swimming should have someone with them, regardless of having epilepsy.
 
JackieFruh said:
Interesting, Belinda! When you have had seizures in the pool, have you ever had to had CPR or be taken to the emergency room? I feel like even if I were swimming in the pool with my son, or sitting next to the pool, I could easily miss the beginning of a seizure, and he might take in a bunch of water before I got him to safety.
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I had to have cpr once
 
JackieFruh

It may not be given up for good only for now, you have to get things controlled first so do not subtract anything just yet, just make adjustments. There are people here including myself who do things we were told we would never be able to do again. He can still enjoy things and is lucky to have a Loving family, which he will realise in time, at the moment, well you know that part.

Life is hard, yes no doubt, but that does not mean we are going to stay in bed all day.
 
JackieFruh said:
So far so good with Topomax, as far as side-effects. The dr. has brought up Depakote a couple of times, but every time we just end up staying with Topomax. I hope this increased dosage controls the seizures. But...is it common for all seizures to be completely controlled by any medication? Or are breakthrough seizures the norm?
Click to expand...

About 60-70% of people with epilepsy are completely controlled by medication - and the majority of them are controlled on the first medication they use (although you may need to play around with the dosage as you have already seen). If you are not controlled on your first 2 medications, it is unlikely you will ever find complete control through anti-epileptic drugs.

So the odds are in your favor and your son will probably find that he can go ahead and participate in life without too many issues. Unfortunately (and this is where things get complicated), it is impossible to tell beforehand which category someone will fall into, and the situation can change. My 16-year old daughter had her first seizures 14 months ago, and her seizures were easily controlled for the first 7-8 months. Since then, her epilepsy has gotten much worse (she has temporal lobe epilepsy, which can be progressive) - she has had 9 tonic-clonic seizures in the past 6 months, and countless partials, and is now considered to be drug-resistant. So there is a lot of uncertainty with this condition that you need to learn to live with!

After the first few months you will have a much better idea of how he is responding to the medication long-term - if he responds well, and you don't see additional seizures, you will begin to relax a bit. If he does continue to have seizures you will probably start to see patterns: what his seizures typically look like, what his triggers are, etc. Then you try to eliminate his triggers, and work around his patterns to keep his life as normal as possible.

Swimming is one of the activities that you should be most concerned about - however, last summer I still let my daughter swim, even in the ocean. I just insisted that a friend be within arms reach of her, and I am hyper-vigilant the whole time. She always has a strong aura before a seizure so I know she will have a warning, but it is still a big worry (by the way, I might not feel so comfortable now since the last 2 months have been crazy epilepsy-wise, but luckily I don't need to worry about this again until next summer). Pools are much safer, but people with epilepsy should NEVER EVER swim alone, even for a minute, and people around them should know that they could have a seizure. You will need to find where your comfort level is between protecting him from harm, and restricting him too much.

It can be a long hard journey, and it really sucks for a teenager to be dealing with this. I wish you all the best and I hope that you find seizure control easily!
 
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