AED Dosages - Increases and Decreases

[Endless]

Can somebody explain this to me? I'm really confused.

I was on 1200mg of Trileptal, 600mg 2x per day. But I was having some pretty severe side effects - it felt like a horrible case of the flu (felt like I had been hit by a truck) plus a rash. But the seizures were completely under control.

So the doc decreased the dose to 900 mg, 300mg 3x per day. Except for the rash, side effects pretty much better or gone. But seizures not under control.

So the doc increased the dosage back to 1200mg, 300mg a.m. and afternoon, 600mg at night. Minor side effects that faded in a few days, plus a rash that is annoying but not dangerous. Seizures still not under control.

How come 1200mg controlled the seizures but had all the side effects the first time around, but not the second time around??? At 1200mg the second time around, seizures at night are not even under control, after the 600mg dose at night. That is really puzzling, and I'm confused.

Is there an explation for this?

 

[Blondie47]

Endless
You have been through so much.

Trileptal has been wonderful and unpredictable for us too. onder:

Taken twice daily, did not provide 100 percent control and caused too much fatigue. Taken 4x daily now with less fatigue, but still not effective enough. Using adjunct therapy now with Topamax ( 50mg 2x daily).

My DD, has multi focal epilepsy with occipital and frontal lobe simple partial seizures.

I would suggest calling your doctor to find out why your control waivers with the divided doses. There is a blood test that you can have to see if your levels are in the right range.

It is crazy sometimes -- hang in there!!!!

Take Care

 

[Endless]

Hey, Blondie,

Thanks for the sympathy. It felt nice.

Despite everything I feel pretty lucky compared to some people on here. I'm just impatient. I expected the problem to be gone after working on it for 6 months. There are people on here that have had a lifetime of problems much worse than mine.

Part of what's hard about this disorder and the meds is how unpredictable and inexplicable it is. In my life I'm used to making a plan, doing the right things, and I get from point A to point B. This is so not like that. I think we're getting close and it all just shimmies away in some unexpected direction.

It's interesting to hear your daughter has had a similar experience. Odd how the timing of the doses makes such a big difference in both how effective it is and in side effects. It doesn't make much sense to me, but there it is.

I'm wondering if the doc will up it to 1500mg. I really don't want to go on an additional drug.

 

[Endless]

I have another question. For about 3-4 weeks now I've had an intermittant low grade fever on Trileptal (99.6-100.3). I guess it doesn't really bug me, and my PCP said not to worry unless it gets above 101. But you add that in with the "hit by a truck" or flu-like symptoms, and I'm beginning to wonder.

Does a long-term fever matter? What if it turns into years of fever instead of months? Does that do anything to you?

 

[RobinN]

One must understand that these drugs are very powerful, and can play games with brain function. How many days went between the decrease, and increase? This could be doing quite a number on brain function, thus the side effects. I found that meds stayed in Rebecca's system for a month.

I didn't ever accept the "don't worry" attitude. This is not healthy and means your body is fighting something. I can't imagine being okay with a long term "fever". In my world, meds had to make life better, not worse.

 

[Endless]

Robin,

It's actually a relief to hear it might be my brain+AED playing games on my body.

To answer your question, my temp goes up and down several times a day. This morning, it was fine (97.3). Right now, 100.2. If it does the same thing as yesterday it'll be up and down a few more times today.

I'm itching like crazy, too. A dermatologist said it wasn't SJS, so I'm not so worried about that. Just a regular drug reaction rash that is localized to two spots. But I itch all over with a regular non-drug-reaction rash, too. It went away at trileptal 900mg, but it's back at 1200mg. It's driving me nuts. I've gone through 2 tubes of heavy duty prescription-only steroid cream and 4 bottles of calamine lotion. Found a great product called "monkey butt." Silly name, nice powder for the semi-moist areas because it has calamine powder in it.

I am so determined to stay on this AED. It's the 4th we've tried, and I really want this one to work out.

 

[Zoofemme]

Endless,

Just my :twocents: but I think he titrated you up too quickly the first time around. You body has gotten more accustomed to the med now so the side-effects aren't as severe...now it'll probably just be a matter of tweaking to get seizure control complete

As for your body temperature... Your body temperature fluctuates throughout the day and it will be different depending on where you put the thermometer in your mouth. Typically, your temp is lower when you first wake up and higher after a lot of activity. Not everyone has a "normal" body temperature of 98.6 either (which my fertility specialist had to explain to me)... so if you normally have a lower body temperature then you probably would feel feverish at a temp that a doctor wouldn't be quite as concerned about. He would have records of that and has probably referred to them

 

[Endless]

Not a mouth thermometer. It's one you put on this one spot on your temple. High temp isn't after activity. Sometimes when I wake up in the night. This up and down is not normal for me. New thing that developed on 1200mg. baffled, but it doesn't seem to be hurting me.

Good observation about titrating me up too quickly. It would explain why going backwards on the dose for awhile helped. I'm going to share that with him when I go in this week.

Tweaking... I accidentally took at double dose yesterday in the a.m. I keep them in little pill compartments. But got the day of the week mixed up and took more later. oops. Anyway, no seizures or auras yesterday. I was a freakin' zombie and almost itched my skin off afterwards, but no seizures. So I think you are right. Need to tweak a little bit.