Weird photosensitive occurances playing piano!

[f314orch]

Hello everyone,

New to the forum, My name is Michael.

Well, this is disheartening: I've been having more and more of these "Photosensitive Epilepsy" episodes ... flicking lights had done it sometimes, but also mostly now, repetitive patterns I scan or cross; walking along a boardwalk against perpendicular (to me) boards was the worst. But lately, playing piano while out performing (I'm an accomplished pianist); as I visually scan the keyboard back and forth l-r-l-r ... I am, of course, scanning across dozens of alternating black and white bars (the keys) and this has a few times, demolished my equilibrium .. not to mention my playing ability at the time; I've nearly fallen off the paino bench a few times. Any recommendations? I'm trying to avoid "looking" at the keys .. oh it's a compromise.

They have me on Keppra, but we're all trying to scale back the high dosage of that stuff way back down to try to get ready to look into a different med; the Keppra's been a nightmare - nearly as bad as the Depakote they started me on at first back in October.

Is there any "pleasant" A.E.D. out there?

I do have an appt. with a specialist in a week.

Plus the Keppra did nothing to minimize the photosensiteve occurrances.

Thanks for reading; glad to find the forum!

Michael

 

[pita300]

Hello everyone,

New to the forum, My name is Michael.

Well, this is disheartening: I've been having more and more of these "Photosensitive Epilepsy" episodes ... flicking lights had done it sometimes, but also mostly now, repetitive patterns I scan or cross; walking along a boardwalk against perpendicular (to me) boards was the worst. But lately, playing piano while out performing (I'm an accomplished pianist); as I visually scan the keyboard back and forth l-r-l-r ... I am, of course, scanning across dozens of alternating black and white bars (the keys) and this has a few times, demolished my equilibrium .. not to mention my playing ability at the time; I've nearly fallen off the paino bench a few times. Any recommendations? I'm trying to avoid "looking" at the keys .. oh it's a compromise.

They have me on Keppra, but we're all trying to scale back the high dosage of that stuff way back down to try to get ready to look into a different med; the Keppra's been a nightmare - nearly as bad as the Depakote they started me on at first back in October.

Is there any "pleasant" A.E.D. out there?

I do have an appt. with a specialist in a week.

Plus the Keppra did nothing to minimize the photosensiteve occurrances.

Thanks for reading; glad to find the forum!

Michael

Hi Michael,

Welcome to CWE. I am not photosensitive but I was a music major in college and feel your pain. I too am on Keppra it is a monster of a drug. as far as pleasant AED I don't think there is a pleasant one I just think the side effects are different with every one. Not every seizure med controls all types of seizures. You need to speak with your doctor about how the keppra is making you feel. They can adjust your dose and put you on a different med like Lamictal along with the Keppra like me or take you off completely.
There are so many different anti seizure meds today that weren't available when I was first diagnosed. The main thing is you need to tell you doctor how the Keppra is effecting you so they can work on either adjusting it or changing it all together. Best of luck to you and welcome

 

[huskymom]

I have the same problem with patterns. Carpets especially. They changed the carpet in our hallway at work and for about 6 months I had to walk along the wall very slowly to be able to make it. I have found that sunglasses help. I know wearing them inside is kind of crazy, but maybe you could try it with the piano? Your a musician, they will just think that you are cool !

 

[Nakamova]

Hi Michael, welcome to CWE!

Agree with the sunglasses solution, or perhaps tinted polarized lenses. See: http://irlen.com/index.php And perhaps where possible, changing the lighting in the room to minimize reflection off the keys. Sometimes it can help to close your eyes and focus on your breathing for ten minutes prior to a stressful or triggering activity. Don't know if this works for you, but two particular Mozart pieces apparently helped reduce seizures in an unusual test. Maybe you could listen to them or warm up with them:

According to the British Epilepsy Organization, research has suggested that apart from Mozart's K.448 and Piano Concerto No. 23, only one other piece of music has been found to have a similar effect; a song by the Greek composer Yanni, entitled "Acroyali/Standing in Motion" (version from Yanni Live at the Acropolis performed at the Acropolis). It was determined to have the "Mozart effect", by the Journal of the Royal Society of Medicine because it was similar to Mozart's K.448 in tempo, structure, melodic and harmonic consonance and predictability.

And yes, a different med may help. I don't know that I'd call any of them super-pleasant, but I have no major side effects with Lamictal.

 

[C0urt]

i am not photesensitive either, i am mostly noise and stress related

 

[f314orch]

Thanks for the many thoughtful replies.

Sunglasses ... one idea ... well, what I have done a few times is, as I mentioned, try to look away. Not a great solution.

One very bad instance recently, was coming down this one flight of stairs in the Community College library ... well, the stairs are wide, of course, and descending each step is crossing a big long perpendicular line .. but the problem is, there's many of them,.

I've had to shut my eyes and hold the bannister to go down ... very, very uncomfortable and awkward. I'm embarrassed to admit I felt embarrassed being seen doing that. ... darn it ...Geez, this whole dilemma is all-l-l-l new to me and my life ...

I'm learning to know when I need to shun my vision away from something ... throws a major monkey-wrench into plans I had been making to perform out at a few places.

I used to play a lot of Mozart, and know his late piano concertos - what fun they are!

Presently however, I'm doing a lot of original fugues (have written almost an hundred) and some large orchestral compositions.

Missed my play-date at a center today, because the Para-transit I use didn't show up ...aw man ... really miss driving ...

You get tripped up mentally from carpets, you said? I assume certain patterns though, right? a mono-carpet's probably benign ... but something with criss-cross (like Mondrian paintings) is troublesome?

Does anyone know why certain patterns and repetitive lines (esp. in my case) cause this effect?

Someone in the field of research might become fascinated by reading this: there's probably fodder for analysis here but: my mother was a painter (canvas) and she had all these book around the house ... books of collections of the great masters ... Kandinsky ... Gaugin ... Klee ... Holbein ... on and on and on zillions of these books .. and Mondrian too. But interestingly, I used to be captivated when I was younger just staring at the Mondrian book -if any of you do not know - Mondrian specialized in these perfectly rectangular criss-cross patterns of lines and rectangles ... that's all he mainly did ... I was always so mesmerized by the appearance of these images .. would stare at them for hours ...

And now, I wrote these long complex fugues ... made up of overlapping, interweaving, cascading, intertwining lines

hmm, .. what does this all mean ...

Glad to be part of the forum.

 

[Lix]

I have been diagnosed with auras/simple/partial seizures- still learning about it all! See my welcome post for symptoms....but one tho g that confused me is the flickering in my peripheral vision- it's constant! Andike a kalidiscope effect in my vision- like a pixelated film over my eyes....like there's a layer of oil- you know? With rainbow colours? I'm Tupi g this and thinking how crazy it sounds!!
I see things moving and god help me if there's a patterned wallpaper or carpet!