Meds working great!

[Crystal11]

Hi everyone.
I am totally off of Tegretol XR 600mg! YAY! It stopped working after 5 years of being on it. We added Keppra XR and the Keppra seemed to work real well but I was still having seizures in clusters or real close together that require E.R. trips.
So, I'm off of Tegretol XR now, and on Keppra XR 3000mg (max) and Lamictal 400mg per day. Also on Propranolol for heart arrythmia/tachycardia and allergy spray. A lot of meds for me but working real well.

So this is the first time to take something for several months that isn't XR. I did notice though that if I take Lamictal too close together that I get so so dizzy. I feel like I'm walking on clouds and not really touching the ground. I feel like I'm "high" even though I don't know what that actually feels like LOL.

My roommate who also takes Keppra XR and Lamictal told me that she has this problem and its probably because it's not XR- which keeps a steady level of meds in my system. I could wake up at 1:00 Pm and go to bed around 3am and not have any trouble. I could take it 6 hours apart and never feel anything side-effect wise.

Anyway- since taking Keppra XR and Lamictal together, I haven't had a seizure for well over two weeks now! Yay!
Only thing that bothers me is that I'm nervous about having another one start up all of a sudden. When I don't have a seizure, even an aura or smaller complex partial I get worried. I've had seizures since age 6 and could have up to 20 a day of the smaller ones and 2 longer ones a month without much change.
So now, it seems that I have better control now than ever before!

Awesomeness!!! LOL
Its strange to have a taste of seizure freedom. And to me, thats no seizures, no auras or no smaller complex partials within 2-3 weeks, as odd as that sounds to some. The longest I went was 1 full month- but even then, I had what I call "seizure attempts" that is like an aura where my eyes shoot over to the right and I feel strange but it only lasts a few seconds.
I told neurologist that I hardly even think about those- and they don't bother me too much, and I don't tend to write them down- even though they want me to.
Hehe

Ok everyone- off to bed I go.
Happy that my seizures are settling down some and I get to relax, even though I get stressed some about break through seizures..

Take care everyone!
Crystal and her guide, Umbro

[Bernard]

Anyway- since taking Keppra XR and Lamictal together, I haven't had a seizure for well over two weeks now!

Fantastic!

[Zoofemme]

That is fantastic Crystal! Can't wait to hear that you have had many more weeks to add to this

[Nakamova]

That's terrific Crystal! (Especially because it means that you don't have to worry about surgery for the time being).

[Rae1889]

Woot Woot!

thats... *thinking of a unique word...* supercalafragalisticexprealadocious!

[seizingbeauty]

HAPPY HAPPY JOY JOY
Keep it up Crystal

[Endless]

This is the BEST news in the world! *happy happy happy*

[nightfighter]

Good stuff,

hope they continue to work for you, so you can get back on the trapeze
and race cars again!

[occb]

Woot!woot!

[Crystal11]

So far so good but I cannot drive- I drive a guide dog LOL hehehehehe.

But yeah, I'm really really pleased with the progress. It would be great to not have to consider sugery anytime soon.

[Blondie47]

So very nice to hear! Made my day

[Crystal11]

Awesomeness guys. I appreciate all of your kind words. I am still feeling nervous about seizures coming back. Since I haven't even had an aura or simple partial or complex partial or drop attack, I worry about when it will come back. I don't trust that it will totally stay away since I've had seizures since 6, and several seizures a month, up to 20, a 1-2 longer complex partials in one month. So going from many seizure in a month to nothing right now is hard to understand and deal with- as odd as it sounds.

I am hoping for many more days without any seizures at all. My brain sort of doesn't know how to settle down it seems. Its like a seizure "Resets" everything and after a seizure, I feel like I would never have another seizure again. Kinda weird feeling.
A longer complex partial leave me feeling drained and disoriented and "lost".. but so far so good in the seizure control I now have.

Take care everyone
Crys

[Endless]

Is umbro extra-happy, too?

[Crystal11]

Umbro is feeling so much better and is very happy! I am so relieved that he is doing better.
So his infections are healing and then his Mommy gets a viral infection of Shingles which is adult chicken pox. The chicken pox is dormany in everyone who got it when they were a child. It can flare up cause horrible pain which I'm in right now.
Pain meds have to be ordered and I won't get them until Monday.. horrible!!
Taking Vatrex which is an anti-viral that I hopes starts working real fast.

So, Lamictal and Keppra XR twice a day, Propranolol for Tachycardia as needed, Veramyst twice a day, and now Valtrex three times a day.
I don't know how I will keep up with all of this. I have a pager alarm that I can wear that has 12 alarms on it. So I've set it and hope that I don't miss anything... (ugh!)

But yes, Umi is doing much better and we are going to Deaf-Blind chat at Starbucks tomorrow and he will be working which I know he will love.
Umbro loves to work and gets aggitated and a little depressed if he doesn't work in a few days. Guide dogs are trained to work everyday, such as going to school and work or shopping.

Anyway- Umi doing good, Mommy doing badly, but Mommy doing great on seizure control for once!