Exertion Induced Epilepsy

[mandy smith]

Hi - My daughter has tonic clonic epilepsy induced by exertion, occuring immediately after she stops (running for eg). Sport is a major part of her life. The link has been apparant for the last 6-9 months, prior to that her epilepsy was under control. She is 17 and its exceptionally frustrating and upsetting for her. Does anyone else have the same issue, and if yes, have you found a way to manage/control it ? (apart from more and more drugs - she is on Lamictal & Epilim at the moment) Any and all advice gratefully received... Thanks.. Mandy

[Loopy Lou]

Sometimes ill have partials at the gym, its more to do with hyperventilating with me. I just make sure that I take regular breaks to make sure I don't do too much all in one go. Staying hydrated is very important too.

[epileric]

Welcome to CWE Mandy.

I'm much like Loopy Lou in that it's the hyperventilation that seems to trigger my seizures too.

I've always found sports a challenge because of my seizures. Interstingly enough when I used to work out in the gym I found it lessened my seizures. I'm assuming it's because breathing properly is a big part of lifting that they weren't triggered from the exertion.

[Christopher]

I find that I begin an aggressive Partial Seizure pattern within a few minutes of halting my exertion. For me, it is definitely NOT tied in to hyperventilation. I know this because there is no heavy breathing going on. I am a Neuromuscular Therapist, and after completing a session, I will soon begin to stare and become unable to interact. Knowing this, I must keep from seeing back-to-back clients. Often, I can only see one per day, which is not a good thing. If I am not properly hydrated and nourished, my seizing is more intense.

[lovemyladybug]

i've learned that exercise can do me in as well , but i think for me it's more about being too hot .... i can go for a short walk during the heat of the day and there i go , but i take a mucccch longer walk at night when it's much cooler & i do just fine , i will say that every time i go for an eeg they make me sit there and hyperventilate for a few minutes so there must be something to that part of it thats a common trigger for people

[epileric]

I am a Neuromuscular Therapist, and after completing a session, I will soon begin to stare and become unable to interact.

When I was in massage college I found I was more likely to go have a seizure after giving someone a treatment. What I also found was that because we learned & practiced on each other that my seizures reduced as long as I also got treated. Even after I left the school (I was asked to leave because my seizures made someone uncomfortable) I found that getting regular massages lessened the frequency & intensity of my seizures.

Can you find a classmate/co-worker that you can make a deal with to get/give regular treatments? That might help your seizures.

[Christopher]

Yes, I'm also troubled by the heat, especially if there is also lots of moisture in the air. I live in South Florida, so that happens a lot in the summertime. I don't know what's actually occurring, but it feels like my brain and the previous fracture site in my neck are swelling.
I went to a yoga class where they had us doing some sort of hyperventilation. I was soon face down on the floor, unable to function. In my last entry I just meant that I can also be troubled when I just exert, even w/o the heavy breathing.
I would like to get massage, but ever since my 2/2010 head injury, it makes me feel sick and spaced out. I feel very toxic. I'm very sensitive to medications and get a similar sick feeling with most of them. In fact, I have to see the neurologist next week to see about getting of this Lamictal because I feel significantly worse on it. Oh well.

[marlena23]

I've always attributed my first tonic clonic to exhaustion, I had a baby that never slept and worked full time, my husband worked nights so I was always alone with my kids, at the time I was sleeping maybe 4 hours per night if that. I didn't know it at the time I was having partials two weeks before my tonic clonic. I thought I was so over tired I was bumping into walls and felt drunk. I wish I could offer an explanation, but I can't because none was ever given to me.

[Wally]

Even after I left the school (I was asked to leave because my seizures made someone uncomfortable) I found that getting regular massages lessened the frequency & intensity of my seizures.

You have got to be kidding me! Let's go to that school, that is a bunch of crap!

[lovemyladybug]

dead on wally ! people can be so stupid !

[C0urt]

I cried when they told me I would have to quit triathlons

[scott001]

Now I understand why I was told when leaving hospital, that I was not to undertake any strenuous exercise. I did ask about it but it was never fully explained to me.

I am embarrassed to ask this question, but what about sex? Yes, I am quite serious. For any of you guys here, and maybe ladies, you may have noticed that a side effect of some meds is that is delays climax. You (and wife) have to do quite a lot to achieve climax. This is quite exhausting.

Have there been any experiences of seizures induced by or after sex?

[C0urt]

yes I have had several seizures during sex, and after sex it helps to have an understanding girlfriend or wife. before sex to. my focal point seizures make every touch feel really good sometimes but i also have aphasia, so the gf had to understand the universal hand sign for lets have sex.

also helps to be in decent shape to help raise your seizure threshold.


there is a fair amount of info over on fetlife.com in their epilepsy and sex group. ........be warned there is also info on everything else you can imagine to, so tread lightly.

[scott001]

Thank you for that.

You mention that it helps to be in good shape to help raise the seizure threshold. I have not yet been able to obtain a satisfactory answer from any of my health care providers as to what I am actually allowed to do and what I should be avoiding. I want to get out and exercise as I actually lost 7 kilos (over 15 pounds) in hospital and I am doing my best to keep it off, however am concerned that exertion my induce another seizure. It's a catch-22 situation.

Sorry to harp on it, but in regards to sex, if a seizure was about to happen, would it be more prone to happen after the act and whilst regaining your breath? To me, intimacy is a very important part of a marriage so I consider this to be a legitimate concern. Maybe I am just being overly concerned.

[epileric]

Everyone is different and different things can make you more or less likely to have a seizure.

A lot of people avoid gyms because the exertion might increase the chances of a seizure. I've found that working out and lifting weights regularly had lessened the chances of me having a seizure but I was most likely to have one while doing the cardio workouts. I didn't stop doing the cardio but was very careful about pushing myself.

You're going to have to carefully find what is more likely to effect you & how.

[Nakamova]

Scott, after my very first seizures (a bunch of tonic-clonics that landed me in the hospital, like yours), I also lost a lot of weight, and wanted to keep it off or regain it as muscle. I joined a gym where I did the nautilus circuit and then a brisk half-hour on the treadmill. I also walked for an hour a day. No problems with seizures. And no problems with sex.

I think part of it has to do with the intangible of your own personal seizure threshold. Another part of it has to do with what kinds of seizures you had, and how responsive they are to meds. It sounds like there's a strong chance your seizures could be a one-time thing. It also sounds like you responded well to meds, and you do have control now.

As always, go slowly until you have a sense of how you feel, and be smart -- stay hydrated, listen to your body, don't overdo, get plenty of sleep and good nutrition.

[Bernard]

Hi Mandy, welcome to the forum.

You might find the following discussions of interest:

http://www.coping-with-epilepsy.com/.../exercise.html

[jyearta]

I went back to my seizure dairy. And I found some of my seizures did come after I worked in yard for hours.

I just got up and got that water, didn't know about (can't find the word in my dictionary).

Have seen this theme though some of the forums. But thought NO not me.
My dairy shows it plan and simple.

Thanks

[C0urt]

oh, forgot,

COMMUNICATION... with the other on what triggers your seizures

[Dignan]

It's like what some others have said.. it really depends on the person. For some exercise can be a trigger, for others, it helps prevent.

I exercise both in the gym and also by running. I've also had doctors warn me about this, but I hate when they do that without any evidence that exercise will negatively affect any one individual.

My personal experience was one where once I started running and exercising, I went on my longest seizure free streak of my life, and I don't think it was a coincidence. I made it 7 years without a seizure.

Unfortunately, I had one earlier this year (a day after a long run) and again the dr tried to scare me about the running. But, since it didnt occur until a day later and the fact that I had been seizure free for so long before that, I made up my own mind on the subject, which was to keep running.

I guess I'm trying to say to be careful, and see what works for you, but also don't let the opinions of others (even Dr's) dissuade you from doing what you want to do. Since we are all different and our triggers are different, alot of what you learn about your individual case is trial and error on your own, regardless of what a doctor says.