Neurology appointment #2

[Crystal11]

I went for my second neurology appointment which went well. I discuss drop attacks I had been having and it was noted- we did not discuss it as much. Next time I will discuss more and ask more questions. We have been trying to get my complex partial seizures under better control for a while now. I'm on 3000mg Keppra, 400mg Tegretol XR (lowered from 600mg on my own, carefully) and now Lamictal 100mg and increasing to 200mg over the next few weeks.
The neurologists that I've seen, all say that Lamictal will work out well, or it should for the type seizures I have. I am staying positive and hopeful that I can enjoy more seizure freedom. It seems that the Keppra keeps my "little ones" or short complex partial seizures 40sec away for the most part. But I still have 1-2 longer complex partial's each month, sometimes every two months. I've been seizure free for one month, only once in my lifetime. I've had seizures since I was six due to prematurity.

Again we did a neurologist-psych exam which went well, I think hehe. She tried to do some visual things- which I can't do since I'm blind. She stopped and looked at me- staring at my eyes, since I have Nystagmus (involuntary movements of the eyes) that I've had since I was born. It is neurological and cannot be fixed. Everything that I do see moves quickly from right to left and I have to turn my head to the right in order to see anything, or to get it to stop shaking so bad. This can be annoying- I was hoping that anti-epileptic drugs could help but it doesn't in any way.

So- MRI was clear- yay. I was expecting atrophy from dieing when I was a day or so old- but it didnt show or I just don't have any. SO thats good.

Nurse came in and told me that I was scheduled for EEG today- which I had no idea. But my transportation was ready so I have to call and reschedule. So now I'm a "no-show" ooops..

Anyways- I'm on three meds now which I don't like- but I will be getting rid of Tegretol XR over the next 5 months. I was hoping to get off of it soon. But I guess I have to be a patient patient. LOL

I can't imagine being seizure free. Since 6 y/o to now I've only been seizure free for one month and I was freaking out- I was just waiting for a seizure to come, I got anxious and frustrated. You don't realize how much you're used to something until its gone. Kinda strange. Most people would love to be totally seizure free. Its taking some adjusting to not having smaller seizures. Now if we could get the longer ones to go away. That would be neat.

Sorry for the long post here- but if anyone out there is taking three meds let me know how you are coping. Are you sleepy or forgetful?

For some reason I have been getting my apartment name wrong three times, when I've set up my Special Transit rides. This is not good because I almost didn't catch myself these times! Which means I would not have a ride.
I hope I don't have any memory troubles being on three meds now.

Ok, that's it for now- hehe
Everyone take care and be safe.
Crystal and her guide, Umbro

[Nakamova]

I hope this latest set of tests proves fruitful Crystal. I know what you mean about the seizure-anxiety --even when you're seizure-free there's this reflex to worry or be anxious at the slightest possible indication that you might have one.

I could see how three meds would knock you out. When I was on two meds (while I was transitioning from one to the other), it made me feel pretty sluggish.

[Meetz1064]

Crystal!

I take 4 kinds of meds, and I have 4 types of nocturnal seizures. I take Carbatrol, Lamictal, Topomax and Klonopin. I'm only on 75 mg of Lamictal 2x a day but the others vary in dosages.

As for seizures, the types vary, but as I said, they're all nocturnal, so they don't interfere with my life so much as yours do on a daily basis---except for the t/c's and the electrographic. The t/c's are obvious why. Electrographic seizures are where the brain seizes all night while you're sleeping with no physical manifestation--so it's as if you never went to sleep!!

In terms of side effects--sleepiness, etc. I dream more vividly on the Lamictal, but then again, my dreams have always been...ODD. Really, who dreams about sharks swimming in a sea of chocolate? *eyeroll* I also have thyroid problems, so it's difficult to determine if my hairloss is due to my meds, or my thyroid....but I do have plenty of hair still, just not nearly as much. I find it EVERYWHERE.

Topomax does NOT make me lose weight---celiac disease does that for me. Dry skin....yes, I have that too, and it's hard to tell which of the meds does it to me, or if again, it's my thyroid.

Klonopin does control my myoclonics, but does not give me any other side effects that I've noticed.

I love Carbatrol....it controls my t/c's, and as long as I take it, and don't miss any for a few days, I'm in really good shape. The only thing I've noticed with it is that I don't tolerate sunlight too well on it...I burn more easily. But then again, I am blond and blue-eyed. Beyond that, no issues.

I haven't had any weight gain issues since I went off the Depakote years ago. Thank heavens. That was a disaster.

Oh, and Keppra and I don't mix. I hallucinate something fierce on that....um, STUFF. I have to laugh at it now.

Does that help any??? Or have I confused you thoroughly? I hope not....

Take care,

Meetz

[Crystal11]

Nope- no confusion hehe. So far I have not had any side effects to any meds- besides the basic sleepiness and I try to have my cup of coffee in the morning just to get a little caffine in my system. I drink soda every few days- not everyday like I used to. My twin on the other had has to have her coke or she is in a mood and gets withdral from it! LOL poor Sis. Her siezures would be in better control if she would not be so stubborn about taking meds. Tegretol did a number on her- nothing too serious but it made her one month trial on it a living hell. Keppra gave her mood problems and I don't want her on it at all! So strange, we are identical twins but I can be on three meds while she can't take keppra, depakote (too high in her blood) or Tegretol.
I hope I can convense her to go back to neurologist sometime just to consider meds. She came with me yesterday and I hope it helps bring down her fear some.

I am hoping that I won't require three meds and I can get ride of Tegretol XR. I was disappointed when I realized I would be on it for another 3-4 months. That is when I go back to neurology for a follow up.

Thanks for the replies.
Crystal