Hello

[binkii70]

I have had epilepsy since birth (1970). I have been on alot of different medications, now for 4 years I have been taking two new medications, Levetiracetam 500mg 2 in theAM 2 in thePM along with Phenytoin 100mg 2 in theAM and 2 in thePM. I really get frustrated because of all the medication. My last blood count was 2 weeks ago and my levels were low and with high enzyme levels in the liver. Sometime I just get so depressed and cry. I will be going on the 19th for more blood tests. I just wanted to join this site to know that I'm not alone and that I'm not the only one that gets scared and stressed. I think people sometime think epilepsy isn't a big deal because it's not something you can just "see" but it is very real for the one who has it. Thank you for accepting me into your forum.

 

[jyearta]

Hi and welcome.

You have come to the right place. You are among people just like you and can understand, cause either we have been there, are going through the same thing.

Do you keep a dairy? This has helped and my Dr.

I too am on Dilantin same dosage as you Also take Clonazepam.

 

[Autumn Breeze]

:waves:

Hi there!!

 

[binkii70]

I started Clonazepam when I was 16 and took it until 4yrs ago it had gotten to the point where I needed more doses and well you know how that goes..so when i moved where i am now (wisconsin) they took me off everything that i was on and started me on what i've got now..i was seizing during the day without even knowing it..now that i look back on it i remember being somewhere then the next somewhere else or it would seem like i was drunk or something. do you ever have problems with slurred speech? i do.

 

[Autumn Breeze]

My father takes Dilantin, has been since like 1978, and his speech has always been a little slurred.

Mine is when I take my Lorazepam, but only briefly. That would be a side effect that I don't think I could handle. Then again, I've had to quit my jobs due to my seizures, so maybe it wouldn't be as big of a deal.

 

[jyearta]

I started Clonazepam when I was 16 and took it until 4yrs ago it had gotten to the point where I needed more doses and well you know how that goes..so when i moved where i am now (wisconsin) they took me off everything that i was on and started me on what i've got now..i was seizing during the day without even knowing it..now that i look back on it i remember being somewhere then the next somewhere else or it would seem like i was drunk or something. do you ever have problems with slurred speech? i do.

I have had slurred speech, but not on daily.

How much Clonazepam were you taking?

I take 0.5 mg, 1/2 tablet every 4 hours, except at 10:00PM, then I take a whole tablet. That is a total of 3 1/2 tablets a day.

 

[binkii70]

i started clonazepam with 1/2 a day and one topamax a day..but then i was up to 4 clonazepam a day. so they took me off of that now i'm on dilantin and keppra which seems to be really good for me..sometimes keppra makes me drowsy but for only about an hour..so far it's kept me seizure free for almost 2 yrs

 

[jyearta]

It is so good that you have found the combo needed to control your seizures.

I couldn't handle the side effects that Keppra caused me, but there are many on this forum that works great .

DR. have tried all the meds. out there, but I've unable to get seizure control or the side effects caused such a poor quality of life. These meds. are all I can take.

Being your on Dilantin, have you had your B-12 levels checked.?

 

[Nakamova]

Hi binkii70, welcome to CWE!

If your blood serum levels are low but your seizures are controlled, there's no reason to up your dose (especially if the meds are starting to affect your liver). Some of us are able to get by on lower doses of the meds, and react poorly to the higher ones.

Best,
Nakamova