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Author: Elifix 
Date:   2018-02-04 16:19

Hello to all,

This might be a rather odd topic but, hope that someone out here has encountered it before...

Well, I have a student whom has been recently diagnosed with Epilepsy condition. He doesn't have seizures although spouts of absences do happen (the doctor is still adjusting the medication to the correct level).

During one of the check-ups, the Doctor managed to induce an absence seizure by getting him to repeatedly breathe out.

So we are not sure if playing the clarinet will actually induce one.

I have found some articles on the net and also am going to write to some foundations to see if they have any experience with it but, would appreciate any feedback or directions if anyone can point towards.

Thank you.

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 Re: Epilepsy
Author: kdk 2017
Date:   2018-02-04 19:08

I don't know the answer to your question. I do suspect that there is an important difference between "getting him to repeatedly breathe out" and the sustained exhalation against resistance that's involved in playing a clarinet. But I don't know how the doctor actually had him breathe to induce the seizure. And an important question, which the doctor certainly asked, would be whether or not the "absences" occur only when he's playing clarinet or under other circumstances as well.

But I did have an experience last year in which a member of a youth band I conduct, a high school girl who has been playing saxophone since elementary school, had a petit mal seizure (just blanked out - became completely unresponsive sitting in her chair for a little under a minute) during a rehearsal. It was the first time it had happened to her while a member of this band. The boy sitting next to her first alerted me while it was happening, and a very short while later she just came out of it, seeming a little dazed but otherwise unharmed. It wasn't until after rehearsal when I told her dad what had happened that I learned she had a history of such seizures (I think what you describe as "absences"), was being treated by a physician and was taking medication to regulate it.

I pass this on because, while there wasn't and still isn't any concern (or, apparently, even consideration) on the parent's or the girl's part that playing the saxophone had *caused* the seizure, there didn't seem to be any question of her continuing to play. She enjoys playing, the seizures are very occasional, not regular events, not particularly dangerous in a musical setting (as opposed to driving a car, which she was not yet old enough to do). From that brief post-rehearsal conversation we had I suspect, if asked directly, their answer would have been that any causal link would be irrelevant, that the benefits of music performance for this girl far outweighed any small risk to her overall wellbeing.

That's of course not a medical opinion - maybe there are long term health risks to continuing seizures that would argue more strongly for avoiding any possible triggers that can be identified. Your research may answer that question more definitively.

Once the correct level of meds is established, the seizures, if not the underlying epileptic condition itself, may cease to be an issue going forward.


Reply To Message
 Re: Epilepsy
Author: zhangray4 
Date:   2018-02-04 21:03

Glad someone asked about this. I think I may able to help as I got my first seizure when I was in 7th grade, a year after I started playing the clarinet. There were concerns on if I should continue playing the clarinet when I had just started falling in love with the new instrument.

The simple answer to "if playing the clarinet will actually induce [a seizure]" is NO. I have also had the experience of doctors inducing a seizure by having me breathe rapidly, rapidly flashing bright lights into my eyes, making me blink faster and faster, etc. I did black out and get a seizure from that back in 7th grade when doctors were trying to find out what caused my seizures. My mom, who was in the room while the doctors were trying to induce a seizure, said as a spectator, the blinking lights by themselves make her dizzy and want to vomit. And the light wasn't even in her direction: it was probably 1 feet away from eyes and pointed straight at me. The breathing "exercise" is also extremely intense. They tell you to take deep breaths slowly at first and tell you to do it as fast as you can, and then match it to the speed of the blinking light, if I recall. it doesn't sound that bad, but when you are doing it for an extended period of time with other things stimulating you, it's bound to induce a seizure.

My point is these tests are extremely rigorous, and clarinet playing isn't (at least shouldn't) be that intense. I am now a senior, and have gotten only a few more seizures after the first one, most of them in middle school. Because I haven't had a seizure in quite a while (knock on the wood), I am in the process of getting off my medication altogether, after slowly reducing the dose for a year with my doctor.

It is possible to continue playing the clarinet at an advanced level with epilepsy. I'm sure there are many other victims of epilepsy who also play the clarinet, and probably at a more professional level than I.

I am glad your student has openly admitted his epilepsy so you can help him deal with it as a teacher. I chose not to tell anyone of my condition because I felt it was a weird disorder that only weird people like me acquire. So even now, no one knows about my seizure except my close family members and now, the BBoard community. The doctor I just switched to last year said it best: there are many people with epilepsy and brain disorders out there, but they won't openly admit it because they are afraid they will get looked down upon. I felt like that way as well.

By the way, the doctors tried to induce a seizure in me again last year. It was still horrible, and felt like blacking out a few times. But I passed the test this time :)

Best of luck for you and your student!

-- Ray Zhang

Reply To Message
 Re: Epilepsy
Author: zhangray4 
Date:   2018-02-04 21:25

A couple advices for your student:

1. It is so easy to miss a dose, especially in the beginning. It becomes even harder when your normal schedule is altered a lot so you are distracted from taking your med. If you miss 1 dose, you'll most likely be ok. But if you miss multiple doses consecutively, that leads to trouble. It happened to me in 9th grade when I was at All State. I forgot to take my meds, and on the car trip back, my dad went to get some coffee at Starbucks and I ordered a frappuccino (technically I wasn't supposed to drink it since it had a little bit of caffeine, and that increases brain activity). And it happened.

2. The pills work by reducing your brain activity to prevent seizures from happening. But it makes you tired. To compensate for that, you must get a lot of sleep. So for example, last year as a junior, 5 out of my 6 classes were AP courses (the other one was band). I still regret doing that last year, as it was very stressful. Despite this though, I still managed to go to bed before 11pm and get up at 6:30 am. It's always tempting to stay up late to talk with friends since most teens go to sleep past midnight, but you just can't do that. Epilepsy forces you to have a good sleeping pattern.

-- Ray Zhang

Reply To Message
 Re: Epilepsy
Author: kdk 2017
Date:   2018-02-04 21:29

zhangray4 wrote:

> The doctor I just switched to last year
> said it best: there are many people with epilepsy and brain
> disorders out there, but they won't openly admit it because
> they are afraid they will get looked down upon. I felt like
> that way as well.

Yours is an interesting story and confirms my thought that the test conditions in the doctor's office are not typical of the everyday experience of playing clarinet or, really, much of anything else.

I wonder if, these days, people with epilepsy are so much afraid of being "looked down upon" as they are of being told they shouldn't do things they love because they might cause a seizure. If an activity isn't demonstrably a direct, primary seizure trigger and the seizures themselves don't put the epileptic or others in danger either in the short or long term, I don't know why anyone would try to prevent them from doing anything they *can* do.


Reply To Message
 Re: Epilepsy
Author: Ursa 
Date:   2018-02-05 01:09

My experiences with epilepsy mirror Ray's. The breathing used to induce a seizure is much more intense than anything one would encounter playing a wind instrument.

Note that I also play the tuba and can blow like The Big Bad Wolf; epilepsy has never caused any issues relative to my musical career.

About the only concern I'd have is dropping an instrument if seizures aren't in good control. Using a neck strap could be a wise idea.

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 Re: Epilepsy
Author: Elifix 
Date:   2018-02-06 16:33

Thank you all so much for the info and input!

Really appreciate it!

Reply To Message
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