New Meds, Kinda..

[Kate]

So, I'm currently seeing two neurologists.. and it's confusing, because they don't always agree on what medicine to put me on. We will call them neuro 1 and neuro 2. Neuro 1 I was first sent to whenever I first started having seizures and her office is near me. Neuro 2 is at IU Med center and is three hours away, always an over night trip because there is also a time change.

So, I am allergic to a lot of seizure medicines. I found this out when I first had seizures. After having reactions to dilantin, depakote, and tegretol I was put on Keppra. First I was on it alone and then in combination with Valium and Topamax. Then I was finally off Valium (I'm a future psychologist and scared of any addictive drugs I don't absolutely need.) Eventually the Keppra made me so sleepy and ANGRY Neuro 1 also took me off it. So, for the last several months I have been only on Topamax.

Well, Neuro 1 had me on a higher dose of Topamax and when I went to Neuro 2 they lowered it. My seizures still haven't been controlled, and as you all know, I broke my wrist from a seizure, and that was the last straw. I called Neuro 1 and she said since Neuro 2 is the last to change it.. to call them! GRRR.

So, I call Neuro 2 and get a voice mail, saying they will call in 24-48 hours.. and do they?? NOPE! Lucky for me, since I broke my wrist (on the 20th) I haven't had a seizure, and since I had an appointment with Neuro 1 yesterday, I didn't bother to call again.

When I saw Neuro 1 yesterday she decided to change the medicine.. finally something done!! She says that Topamax isn't really meant to be taken alone. Which made me want to say WHAT THE HECK?! So why have I been on it for this long by itself, having so many seizures, and no one changing it!

Now she has added back.. KEPPRA! Which I was taken off because of the trouble I had. And it was BAD.. I cussed out my parents (soo not me), went off on my (now ex)boyfriend, was just nutty.. I'm moving out in three months, and I do not want my two roommates to have to deal with me being evil! Also, I don't want to be sleepy all the time again.. I'm finally back to going to sleep early, and waking up between 5-7 AM. I love not wanting to sleep all day.

Last night was my first night on a low dose.. and I call Monday and she's going to start raising it... boo. :crying:

​

 

[Bernard]

If you feel the KepRAGE side effects, you might consider trying some vitamin B6 supplements. They are supposed to help curb it.

 

[BuckeyeFan]

Hi Kate

I was wondering how you were doing with your wrist. Hadn't heard from you in a few days. I hope you were able to enjoy your weekend a little.

The purple cast still rocks!!!

I have posted this advise several other times on how I deal with keppra. I don't know if it will help anyone else, but it helps me.

I don't try to hold my kepRAGE in too long. Instead I try to channel it towards things I won't hurt or hurt me. For example, I get mad at the politicians, go wild about sports events (at home), or exercize really hard (basketball for me). All of these things and more seem to curb the frustrations and keep them in check around friends, family, and at work. I also type out a lot of e-mails (don't address them) that never get sent. By the time I am done typing, I have cooled off a little.

I am not suggesting that this is easy, but it something that I have learned helps ME.

I hope the keppra works. It can be very effective in combination with other meds.

:e:

 

[RobinN]

This approach tends to baffle me. Does the doctor think there will be different results this time around? Is neuro #2 in agreement? Too bad the two can't consult with one another.
I wonder why that is such a difficult consideration for many doctors.

 

[speber]

Man, that bites Kate...

I would say run from the drugs if it weren't for the fact it sounds like you really need their help right now...(I'll take the KepRAGE over broken bones anyday!). Hopefully this settles down quickly for you...maybe the Keppra will play 'nice-nice' with Topamax and the combo will work.

1. Document EVERYTHING and try to be certain in your gut that a symptom is the drug(s) and not pure frustration at this point so the neuro's don't get mixed messages...
2. De-stress however you can....take up drums, extreme darts, whatever...
3. Keep researching WHAT the side effects will likely be and how to counteract them...as you are doing!

This too shall pass.
:rock:

 

[Kate]

Im trying B-6 with it this time.. Thanks!! And also, those are some good ideas to channel anger, I appreciate it.

To answer your question, I have no idea Robin! If I had my say, I wouldn't be on any medicine.. when I was taken off them in the hospital I had NO seizure activity. But.. apparently I have no choice. My parents aren't into researching alternative treatments.. and I know I'm old enough to do it on my own, but I am dependent on them, on their insurance, etc.. so basically it's in their hands, and they say I do what the Neuro says.

 

[speber]

But you know!....

Alternative treatments don't necessarily have to REPLACE AED's Kate...just help you minimize the depency on such a high dose or number of them!

By no means would I DROP my meds cold turkey, but I DEFINITELY enjoy experiencing less dependence than before through my efforts with music and some of the things the kind folks around here have 'learned me'!
:twocents:

:rock:

 

[RobinN]

Most of the alternatives that I have found for Rebecca are not monitored by our insurance. We still do what the neurologist recommends, however through my research of what my daughter needs I am able to make suggestions. Our neurologist sees her for 15 min every few months. I see here every day and can make more intelligent observations.

I have always preferred to play the game, rather than be an observer.

 

[Meetz1064]

awwww, what a

bummer deal.........

Isn't there a way you can get the 2 doctors to at LEAST TALK to each other? I mean, really.

And Speber and Robin are right. Alternative treatments don't have to totally replace meds. But they CAN be an adjunct therapy. Taking on the responsibility yourself will show your parents just how much you're maturing, too. :clap::clap:

I hope the B6 helps.......

Take care!

 

[brain]

I had KepRAGE and the Epi never said a
single word about me taking any vitamins
or nothing ... just was taking Keppra and
Zonegran (Zonisamide) 400 mg (200 mg x 2).

It was fine, but he kept raising it, to a point
where at 3000 mg (1500 mg x 2) I was in
a pure state of psychosis (the major side
effect; and I had tons of other side effects
too)... the side effects just literally grew
as he kept titrating the dosage upwards.

Then he had to take me OFF of it suddenly.

MY GOSH! Not a single word from him about
any vitamins, minerals, supplements, or any-
thing ... nada!

All he stated was this was the best AED for
me ... I often wonder now how Keppra would
have been if he had added Folic Acid or
something.

onder:

But I've posted this MANY TIMES in regards
to Keppra aka KepRAGE:

Keppra is a wonder drug for many
and to others a not so wonderful
drug.

Let's hope it works with the B Vitamins, I
just wished my Epi would have told me
this before!