How much Trileptal do you take?

[Blondie47]

We just had another break through yesterday! The second in ten days.

I don't understand it- we went 7 weeks without a seizure and now it seems that things are unraveling.

My DD takes 600mg am and 600pm of Trileptal. Her levels were just taken 4 weeks ago and were normal. I put a call into our Epi Center for counsel.

I know that if this drug does not provide 100 percent seizure freedom and 100 percent of no side effects we are suppose to ramp up to Lamictal. My big question will be when do you decide when? We still have 7 weeks left of summer vacation and I would rather make the switch now.

Is this normal or just a dip on the roller coaster?

 

[Nakamova]

Unfortunately, there's a lot of trial and error with meds -- what works for one person doesn't always work for another. And what works for one person can stop working for no apparent reason. In your DD's case, is there anything that you can point to as a possible seizure trigger? Summer often means a change in metabolism or diet, or exposure to extra heat and dehydration. There can be stress from activities (even positive stress counts) and disruption of sleep habits.

These can all affect how efficient a medication is and perhaps cause the "dip on the roller coaster".

If it does seem like it's time to add the Lamictal, keep in mind that the process of tapering onto it is slow, so it might take awhile before the full benefits are felt. In my experience, there are always side effects, even minor ones. But I've got my fingers crossed that you find that perfect balance, with zero seizures /zero side effects sooner rather than later.

Best,
Nakamova

 

[Meetz1064]

Get her

blood levels done again, NOW, before deciding what to do. Did she do something out of the ordinary? Did she play video games that she hasn't done before? Think about what's been going on. Have you been keeping a journal? If not, start keeping one. I have some excellent tips as to what to put in one.....

 

[Blondie47]

I keep a keen eye on her and the time of day seems to be the same (around 5pm) and she is on her cycle.

In the past she has had clonic seizures during her cycle. Yesterday was just a head jerking frontal seizure about 10 seconds.

Thanks- I am interested in hearing more about journaling tips- I keep an excel spreadsheet for journaling. Can't imagine being on top of things without it!

 

[flinnigan]

I had a similar experience. I started Trileptal in Dec. '08 and went 59 days with no seizure. Some web sites refer to that as a honeymoon period. I guess whaat happened in my case was hormonal. I'm very sensitive to hormonal fluctuations and I skipped my period that month so as soon as it came back so did the seizures. What a complicated disorder this is. I'm still taking it 450mg AM and PM, I'm now 5 weeks seizure free but that may be more due to having had surgery. I'll remain on Trileptal at least 1 year.

 

[Melpier]

2400mg is the daily maximum recommended dose ... I was on 3200mg daily. Make sure they also keep a close eye on the sodium levels.

 

[Blondie47]

Thanks for your kind replies!

I had a chat with the np and we are going to raise her dose to 750 at night.

We talked about possible triggers and decided that it is probably hormonal.
If she does have another breakthrough after 7 days, our epi will be brought into a discussion of the current difficulties. GOSH- I just love the care we receive at this epilepsy center.

So that will bring my DD to 1350mg daily on Trileptal. She is fine with it and hopes that it won't make her too tired out. If it does, I will journal, journal and journal some more!!

 

[flinnigan]

Great, Ask him what he thinks about adding progesterone.It seemed to ease mine.I had 18 seizures in April and was down to 10 in May after adding Prometrium, its an oral progesterone. While it didn't stop them they were less frequent and better yet less intense. My epileptologist is currently involved in a national trial using progesterone. I'm anxious to see the results. I kind of took things into my own hands a little but with his blessing and had my OBGYN prescribe it. I really like it, it makes me feel calmer in general.

 

[RobinN]

Rebecca used a bioidentical progesterone cream, that is placed on the inside of the thigh. All my research said the synthetic hormone is not as effective. I personally wanted to know why the hormones were out of balance. For the past two months she has not used the cream, and also has been seizure free.
For us it seems that the liver, insulin and blood sugar levels are what are actually causing the hormonal imbalances. So correcting this is the goal.

 

[Rhea]

I started out in March taking 300mg twice a day. Now, it was just raised last week to 600mg twice a day. I'm tapering up now, and I feel better. More lucid moments, less lost time, less emotional. seems to help.