Topamax could ruin my musical career!!!

[jamie0168]

I got on topamax about 5 months ago. It keeps the seizures at bay so nicely.
However, I'm a senior piano performance major about to start my grad school auditions along with several other important competitions. For those of you who don't know, I have to play all this music (HARD music) from memory (approximately 2 hours worth if you put all of these events together.) I've noticed all semester that I've had horrible, embarrasing memory slips on stage. NEVER, EVER happened before. I even asked my teacher and he said that he always thought my best, most secure playing was on stage. '
Then, I found out that Topamax actually causes memory problems. I was so scared. I couldn't have this keep happening and destroy my grad auditions. I contacted my neurologist and he said he'd switch me to Keppra.
The problem is that my school's concerto competition (probably the most important competition of the year is a week from today.) I took my last topamax pill last night. I cannot have those memory slips happen and ruin this oopotunity for me. Will the medicine be out of my system before Tuesday or will the memory side effects still be effective?!
Also, what are the side effects of Keppra? Please share as much as you can! I want to know everything about this medicine before it can destroy anything else for me.

[Bernard]

Hi Jamie, welcome to the forum.

I hope you didn't stop the Topomax cold turkey! You need to titrate down slowly when weaning off of AEDs or it can cause problems.

Other members here have also complained about Topomax. I should think all the Topomax would be out of your system within a week.

[Bee91]

I used to be a gifted pianist. I had been playing since I was 4.Im currently on Topamax. Epilepsy ruined my piano career, but I think the Topamax did much to help ruin it. It does effect your memory a lot. You probably will see a big difference once you are off of it...

[RanMan]

Jamie,

Unfortunately, you're caught in a catch 22.

Either have the seizures or suffer the side effects of the meds.
I have a similar story that I posted on another board.

I find it pretty interesting the way that side effects from the meds can change your whole lifestyle.
The meds have screwed up my coordination to the point where I can't participate in any sports, or even ride a bike.

I found out the hard way that you should always have a plan "B" to fall back on.

I used to be a singer/songwriter in the '70s and taught music to handicapped kids but since my first seizure in 1979 it has destroyed my dexterity, I haven't been able to pick up a guitar because my coordination is so bad that I can't strum the strings or coordinate my fingers to form the cords and the other finger movements required.

My life goal WAS to make a living from my music but circumstances changed that.
I ended up working for the Government for 29.5 yrs. and then as a result of the side effects from my epilepsy meds, the Government made my job redundant and because of my learning disability caused by meds, they didn't think it would be "feesable" to teach me a new job and also because of my age so they put me on disability.

I can no longer play my guitar or sing but I can still write music and had a friend perform them and record them on a CD and they now get local air play.

So, as you can see, my life goals have changed so I had to go to plan "B". Although it's not what I wanted, I try to make the best of it.

Randy

[speber]

Jamie....what Bernard said is 'on the money' and at the top of my list of things to say to you. If you 'cold turkey' the Topamax, the results could be devastating!...be very careful! They don't call it 'Dope-a-max' for nothin'.

I hear you...we all do. I'm a musician as well, although not as trained and not in the position you find yourself in. The switch to Keppra should help with the memory problems, but when I was on it I initially suffered some paranoia-like symtoms...so watch out for that! It could affect your concentration when playing.

Ultimately, you are going to have to figure out how to relax here. The anti-epileptic drug's should take care of the seizures (if you don't 'cold turkey' the Topamax), so really it's just a matter of settling down your mind enough to focus the best you can.

Good luck!

[renee97]

I got on topamax about 5 months ago. It keeps the seizures at bay so nicely.
However, I'm a senior piano performance major about to start my grad school auditions along with several other important competitions. For those of you who don't know, I have to play all this music (HARD music) from memory (approximately 2 hours worth if you put all of these events together.) I've noticed all semester that I've had horrible, embarrassing memory slips on stage. NEVER, EVER happened before. I even asked my teacher and he said that he always thought my best, most secure playing was on stage. '
Then, I found out that Topamax actually causes memory problems. I was so scared. I couldn't have this keep happening and destroy my grad auditions. I contacted my neurologist and he said he'd switch me to Keppra.
The problem is that my school's concerto competition (probably the most important competition of the year is a week from today.) I took my last topamax pill last night. I cannot have those memory slips happen and ruin this oopotunity for me. Will the medicine be out of my system before Tuesday or will the memory side effects still be effective?!
Also, what are the side effects of Keppra? Please share as much as you can! I want to know everything about this medicine before it can destroy anything else for me.

Jamie,
I also agree 100% with Bernard. Never just stop taking your anti-seizure med cold turkey. Unless, of course, you would prefer to continue having seizures at all different times at even more embarrassing moments.

I never was able to get to the performance end of music as you have. Now I am just a lowly composer and the meds I take only allow that a few hours a week!
I will tell you that I do not recommend Keppra even though (or especially because) I have been on it for over a year. I hate the stuff. I also dislike Lamictal and Phenytoin. I don't like any of these meds. Do whatever you have to do to get through the next week or two but don't stop the meds cold turkey.
I would highly recommend the CBT that Bernard talks about. If I could lower the amount of meds I take, I would find someone to help me with using the CBT. It is better than any drug.
I feel for you, I will tell you that. I memorized a ton of flute music as a flutist and an even bigger load of music for piano when I switched my major to piano.
I can still play the piano to some degree. Hang in there and come back and let us know!!
Renee

[speber]

Renee, since WHEN have composers been considered LOWLY?!?!?!?!

There's a bunch of 'wigged' dudes rollin' over in their mausoleums!

PS.How's the composin' comin?

[renee97]

Renee, since WHEN have composers been considered LOWLY?!?!?!?!

There's a bunch of 'wigged' dudes rollin' over in their mausoleums!

PS.How's the composin' comin?

Well, many of Bach's manuscripts were used for wrapping fish and meat, and Mozart was thrown into a pauper's grave. Since at least the late 1800's people would prefer not to hear new music and many composers and their works have been booed, ridiculed, and despised.
I myself was shocked when the principal flutist of the St. Paul Chamber Orchestra (a kind of friend) wrote an email saying that "we who play can only wish we could compose."
My response was for comedic purposes:
"Yes, but have you heard any of my music??"

The last four days have been pretty bad here so I am impressed I can conjure up any humor. One **** thing after another. Later.
Oh, and jokes about music and musicians number in the hundreds!
R

[jamie0168]

I used to be a gifted pianist. I had been playing since I was 4.Im currently on Topamax. Epilepsy ruined my piano career, but I think the Topamax did much to help ruin it.

I used to be a singer/songwriter in the '70s and taught music to handicapped kids but since my first seizure in 1979 it has destroyed my dexterity, I haven't been able to pick up a guitar because my coordination is so bad that I can't strum the strings or coordinate my fingers to form the cords and the other finger movements required.

My life goal WAS to make a living from my music but circumstances changed that.
I ended up working for the Government for 29.5 yrs. and then as a result of the side effects from my epilepsy meds, the Government made my job redundant and because of my learning disability caused by meds, they didn't think it would be "feesable" to teach me a new job and also because of my age so they put me on disability.

I can no longer play my guitar or sing but I can still write music and had a friend perform them and record them on a CD and they now get local air play.

Guys, you are really scaring the Sh*t out of me. Do you have any idea how long I've been working for this? (my career.) I had no idea that medication could ruin your memory, concentration, COORDINATION?! I only found out about a month ago that they can ruin your children! Was it the seziures or the meds that ruined your coordination? OMG! I think I'm going to cry.

I swear, I never thought of epilepsy being a big problem in my life until recently. I thought, 'So, I have a seizure every now and then when I fall asleep, big deal. So, I make a screaming noise and wake up my boyfriend or mother, whoopdeefreakindoo. I had always heard that seizures do no permanant damage unless you actually injure yourself during it, so I never worried.

But I've never even stopped to wonder what these blasted medications could do!!! Carbamazepine never caused me any problems whatsoever, that is, until it stopped working a decade later.

I feel so trapped.

[jamie0168]

Sorry, freak out session there. I've checked out the AETs before. Not sure what my action would be on any of those. Have any of you tried them?
Now, as far as "cold turkey", I'm supposed to take 400 mg a day. I've pretty much gone down slowly from 400 every day to 200mg a day for two days, to 200 mg a day every other day for about a week, now I'm at zero.
Too fast?
What happens when you stop cold turkey, btw? What happens when you stop too fast? Sheesh, I make president's honor roll in college, but when it comes to knowing about my own disorder...

[renee97]

I cannot speak from experience, so don't quote me. If you reduce your meds too fast, your seizures could return. Possibly on a regular basis. Go back up to Bernard's entry and click on "Weaning off anti-epileptic drug's"
From my rather warped perspective, you would be better off staying with the meds and staying as healthy as you can. Please don't risk your life over the concerto competition. Please?
renee

[renee97]

jamie,
I am not certain I should do this, but I do have a website: www.lisaragsdale.com
gives a little more contact info. I really do compose music.

[brain]

I can still play music!

Although I used to play by memory; it's very
difficult now because my memory is up and
down (I have good days and bad days). I still
read music, but sometimes that's difficult as
my vision is affected at times.

When I called Birdy on the phone (the Super
Mod), I was leaving a message on her answering
machine and playing my Yamaha keyboard at the
same time ...

And then I realized ... OOPS ... I wondered "Did
I have it too loud? Is she going to hear the
message I left for her?" I think I better call her
back later ...



I sold just about every instrument I owned
except for the Yamaha Keyboard ... I still have
a few at my mom's house, but those will go to
my son (Wutlizer Piano & my son's 3 Great-
Grandfather's Violin). I have the original Yamaha
Recorder (Fluteophone to the Hippie Folks) from
the 60s Era, and I do play it.

But can I hear myself play?

10,000,000,000 times NO!

Can I feel the vibrations?

10,000,000,000 times NO!

I lost the vibrations last year. I lost all my
hearing completely too to the rock bottom
of the decibel scale. (Car accident in 1988
which I was in hard of hearing range of 15
dB (decibels) pummeled me down to 95-100
dB and stayed there - making me Deaf.)


I am Legally Profoundly Deaf.

But I can still play Woodwinds, Brass,
Percussion, Strings, etc... and unusual
instruments. But I just cannot hear them
and I need someone to be on a stand-by
to let me know when it's in tune, and from
there, I go by reading the music and keeping
my eye on the Director or stand-by. Because
I cannot hear.

Have I ever composed music? Yes - both my
little sister and I have ~ we were also singers
as well; until my voice cracked.

If I had a choice to pick an instrument out
of the many which would be tough!
I would go with the super expensive Harp.
I would make room in my house for it.

[speber]

Sorry, the responses from all of us were not intended to be SCARE tactics...but rather an offering of our best 'sage advice' from veteran epileptics who can relate somewhat to your situation.

Yes, epilepsy is very real and difficult.

Yes, it can screw up your plans.

But all cases are not the same.

I don't know exactly the severity of your seizure disorder...but it seems you did 'back off' your dosage of Topamax. If that was the 'doctor recommended 'backing off' cycle then you may be okay...I can't really say.

Again, Jamie, life with epilepsy is a change, but not necessarily such a change you can't overcome it!

Peace and Good Luck!

[Bee91]

Guys, you are really scaring the Sh*t out of me. Do you have any idea how long I've been working for this? (my career.) I had no idea that medication could ruin your memory, concentration, COORDINATION?! I only found out about a month ago that they can ruin your children! Was it the seziures or the meds that ruined your coordination? OMG! I think I'm going to cry.

I swear, I never thought of epilepsy being a big problem in my life until recently. I thought, 'So, I have a seizure every now and then when I fall asleep, big deal. So, I make a screaming noise and wake up my boyfriend or mother, whoopdeefreakindoo. I had always heard that seizures do no permanant damage unless you actually injure yourself during it, so I never worried.

But I've never even stopped to wonder what these blasted medications could do!!! Carbamazepine never caused me any problems whatsoever, that is, until it stopped working a decade later.

I feel so trapped.

Epilepsy caused brain damage to the part of my brain where....uhh....apparently the part where you know who to play piano.? I only got brain damage because I had some long seizures and my doctors (at the time) were telling me that they were fake. They weren't fake. That is why I suspect I cant play like I used to. Hopefully, As long as you have a good doctor. and get of Topamax, maybe everything wont be at such a loss...

[Bernard]

I had no idea that medication could ruin your memory, concentration, COORDINATION?!

Most anti-epileptic drugs work by dampening/dulling overall brain activity in an effort to suppress "forest fires". Some are stronger than others. And the side effects are stronger for some than others.

Stacy (my wife) could not tolerate topomax at all. Depakote (sodium valproate) turned her into a complete zombie. Dilantin has been awesome as far as clarity of thought and energy, but is known to have long term affects on coordination.

I think that you came down of the Topomax pretty fast, but if you aren't experiencing any problems, then it was probably OK in your case. It's good that you didn't just quit cold turkey!

Best of luck with your concerto competition and you'll have time to expore your seizure control options afterwards. There are some non-drug options out there (see my chart linked in my signature below) that you can investigate.

[Bee91]

Yeah...most meds do that to you. Im now on two anti-epileptic drugs and I feel like I am a drunken fool! Out of the few meds Ive been on, Dilantin has also been the best when it comes to side effects. I dont remember having any. But the only problem with that is pregnancy...But most, if not all seizure meds are like that :-/

[brain]

I tried to find the link where the famous
Violinist, who had to undergo surgery I
believe TWICE, and after having to take
anti-epileptic drug's ~ and she's an "Expert-O" and she
has Epilepsy!

Surgeons were SO WORRIED that she would
never play again....

Guess what?

She's playing ....

Better than she ever was before she had
the surgery and they had to operate in
the most critical part of her brain!

If anyone can find her - she's from Japan;
PLEASE POST THE LINK! I LOST IT!