Here we go again.

[Sandie]

Well here we go again.Three weeks of being totally seizure free after upping the Tegretol to 1000mgper day I thought Yay-back to normal (or my definition of normal ). 4 days ago my old friend returned-you know-the smelly one which doesn't go away no matter where you are. It doesn't like to party alone so it invites it's friends, the hangover, the vivid dreams AND the scrambled brain which likes to mix up all my words before they get to my mouth not to mention the headaches. I know I am having absences because I keep hearing my husband asking me if I am alright so obviously I have been acting a little weird. Now my neurologist wants to add Keppra to the mix. Oh well here we go again. Can anyone tell me what it is like to take Keppra and Tegretol together.onder:

 

[CQ:)]

Hi Sandie,
Congrats on going 3 weeks seizure free, sorry to see your old friends returned though.

Has your neurologist started you on Keppra yet or has he just mentioned it may be an option in discussion?

I was on a combination of Tegretol & Keppra from 2008 - April this year, I haven't had many side effects from either meds & I seemed to go fine on both meds.
I did still have partial seizures when I was 1st put on Keppra with the Tegretol but my neurologist tried me on 5 AEDs, none of which controlled my partial seizures which is why I had the testing for the surgery.

I had my brain surgery in March 2011 & have been seizure free since the surgery so I was able to start reducing the Tegretol last year & came of it completely at the end of April this year & am now on just Tegretol.

Keppra is nicknamed Kepprarage because one of its main side effects is depression, mood swings. I haven't ever had any issues with Keppra rage so I guess Im one of the lucky ones lol.

 

[Sandie]

Hi CQ. My neurologist is definitely starting me on Keppra. I only saw him via Skype this time so he is sending me the prescription and I am not sure what dosage I will be on yet. He is knocking back my Tegretol to 800mg per day when I start on the Keppra. I really hope that the Keppra doesn't cause depression with me because I suffered badly with major depression some years ago and so far have been really lucky on the Tegretol alone. I am very lucky to be blessed with a great husband who is very patient with the whole process so maybe I will be one of the lucky ones too lol. Thanks for your input. I am so glad you are seizure free. I really hope life continues to treat you well.

 

[CQ:)]

I expect that your neurologist will start you on a lower dose of Keppra & slowly increase the dose.

I can't remember what dose my neurologist started me on with the Keppra but I know when I met the epiologist in 2010 (to discuss surgery) I was up to 1500mg of Keppra (AM/PM), as well as 400mg Tegretol (AM/PM) & 400 Neurontin (AM/Lunch/PM). When I had my VEEG in Nov 2010 the epiologists altered my meds, they took me of Neurontin (at my request as I hated being on it lol) & lowered the Keppra to 1000mg (AM/PM).

I am currently on 1000mg Keppra (AM/PM) & will stay on that dosage until I see my neurologist which won't be until next year.

Good luck with the Keppra, hope there aren't to many side effects.

 

[masterjen]

I was on Tegretol and Keppra for about a year. Doses of tegretol were gradually increased until I reached 1200 mg (keppra was at 1000 total and didn't change as Tegretol increased). No side effects, but not sufficient seizure control. So Keppra was increased but I couldn't tolerate anything more than 1500 because the night dose was causing my mind to run wild at night - I'd get to sleep fine but then I'd wake up with my mind racing, weird thoughts, etc. And I couldn't go any higher on Tegretol because of double vision, imbalance, etc. So then Vimpat was added.

 

[CQ:)]

So Keppra was increased but I couldn't tolerate anything more than 1500 because the night dose was causing my mind to run wild at night - I'd get to sleep fine but then I'd wake up with my mind racing, weird thoughts, etc. .

I used to have strange things happen in my sleep, some mornings I'd wake up & notice there were things on the floor that hadn't been there the night before or I was wearing different clothes to what I was wearing before I went to bed.

I thought it was some kind of partial seizure in my sleep because most times that it would happen I'd have a headache when I woke up, also I live alone so couldn't blame anyone for moving things lol.

I mentioned it to my local neurologist once & he just told me I was sleep walking. I didn't think it was sleep walking because I don't think I had sleep walked before, also I'm pretty sure these night time episodes started after I was put on Keppra. I saw a epiologist not long after, when I saw him I mentioned the funny night episodes & he told me he was 90% sure it was a type of seizure I was having in my sleep. It's funny I was very happy to hear that & thanked him because it proved I was right & not crazy lol.

I can't remember for sure but think once my Keppra was lowered form 1500mg to 1000mg the funny things I did in my sleep reduced then stopped.

 

[Sandie]

I don't get much night time activity but I do get vivid dreams and sometimes wake up disturbed and upset. Most of my seizure activity is contained. I usually get massive hangovers instead of physical seizures which my neurologist has said is my brain having multiple seizures. The only noticeable outward sign is if I have an absence seizure or if my speech is affected. I do put things in strange places and have an obsession with throwing away teaspoons lol. The olfactory hallucinations are annoying. I thought everything had settled down with the Tegretol. I have increased the dose three times and each time it has got a little better and then slipped back again. The last time we increased it I really thought it had done the trick. Three weeks seizure free and then everything started coming back five days ago. Neurologist said that Tegretol may not be the med for me and is starting me on Keppra and reducing the Tegretol. Not sure whether he is planning on taking me off the Tegretol altogether.