a twenty year old in denial

[ineed13]

Prior to January 24, 2013 I had never had a seizure. There was some history of a few cousins and a great grandma having a few and being medicated, however I never imagined it would happen to me. I was nineteen years old, never been sick with anything, and invincible.

On that lovely Thursday evening, I had three Grand Mal seizures within an hour or two that lasted more the 5 minutes. The next day after spending a night in the ICU, I was diagnosed with epilepsy due to my "impressively abnormal" EEG results. After being ten months seizure free, I was in denial that I had epilepsy. I was eager to redo my EEG in a year following my initial seizures to see if it was circumstantial. (I had a root canal and major doses of anesthetic the day before the initial onset of seizures) Due to my denial and feeling invincible, I had become less vigilant on taking my medication. I would forget one night but take it in the morning, and everything was fine. However, on November 5, 2013 I had two breakthrough seizures after forgetting to take my dosage the night before and that morning.

I could no longer deny it and since my neurologist has upped my does to 750mg Keppra twice a day, I feel awful and could use some support.

My hair is falling out at an alarming rate, I am tired all the time, my mood can change in a second, and I no longer want to be around people (which is odd because I love people). Plus I'm having crazy dreams. When I was initially place on Keppra, I had some of these side effects, but this time around they are worse. I don't know if it's because I'm more aware, or if the higher dose really does make that big of a difference.

Would it be strange for me to ask my neurologist to lower my dosage again if I promise to never forget again?
Any advice or help would be amazing!

 

[Fedup]

ineed13

Its not just a question of asking your neurologist to lower the dose, as to try something else. Keppra can change you mood rapidly its called keppra rage (look it up) the thing with medication is it is a hit and miss situation to find one that suits you, in other words one that controls you seizures and you are will to put up with the side effects which is not easy do. The anesthetic could have been part of your problem but forgetting to take your medication is not good. Try setting an alarm for yourself or have some way of reminding yourself to take your medication it is important to take it and at regular intervals.

Yes go back to your doctor and neurologist and tell them you are not happy, tell them all that is happening to you and say you want to try something else. It may be a case of where you might have a combination of medication to take. Do go back and tell them everything and make sure you say you are not willing to live with these side effects. Do it in a nice way (which is not very easy) but stand your ground.

 

[cadsgj]

I do not think it would be strange at all to ask your neurologist to lower your dosage. I think it is ok to ask ones neurologist anything. In my near 20 years I have never had a problem getting an answer, well, for the most part. I will admit, a couple times I did not like the answer, but I did get an answer.

In the area of forgetting medication... I am in the pro-zone here. Even with my medication in an area where I for sure will see it many times through the day, some times I still forget. To help out a bit more with memory, I now use an alarm clock (idea I got here at CWE ) via my cell phone. Aside from my ways, there are many ways to help remember, so figure out which is best for you and go with it.

Hair... I have been told that many times ones hair with medication change often has a period of falling out. Me, with Vimpat, I started having hair loss but it was not overly rapid and it appears to have stopped, along with a couple other problems that started with my new med, but I was lucky in that hair loss wasn't too fast... hope things clear up with you and stop; shoot I hope overall things get better for you.

 

[giveasmile]

I'm sorry you feel so terrible. I'm tend to experience a huge surge of side effects on every dose increase, but it's usually a temporary thing until my body adjusts again. It's important to talk to your doctor about it if not temporary or if it's causing a bad quality of life. I'm sure they would rather adjust the dose and/or change/add another drug than to have you feel so awful that you stop taking it.

It's never strange to ask your doctor questions like that. All these drugs effect everyone differently. It may take time and a good partnership with your doctor to find which one or combination allows you to curb the seizures with the least amount of side effects.

 

[CQ:)]

Hi ineed13.

Welcome to the forum.
I don't think it is strange at all to speak to your neurologist about a med change, it has been said on here before the neurologists work for us. If you are struggling with the side effects from the Keppra I suggest you do ring your neurologists clinic & see if you can get in to see them.

It can sometimes take a bit of trial & error to find the right medication & right dosage to help control the seizures.

There are a few things you can do to help remember to take your meds, as it has already been suggested an alarm is a good idea, a pill box is also great.
I use a pill box which I keep on a bench near where my computer is, the pill box I use is 7 individual boxes which is divided in 2 parts AM & PM but there are plenty of other types out there.
I also have an alarm near my computer which is set to go of at 6pm every night & I also find the easiest way for me to remember my meds is to take them with my meal eg - morning med I take with breakfast & night med I take with dinner.

 

[valeriedl]

About 10 years ago when I was 26 I had my first seizure completely out of the blue. The seizures were very severe and wouldn't stop so I had to be put in a medically induced coma just to control them. After about a month I was finally ok to go home.

Right now I'm having on average 7 seizures a month. They are almost always partials but I may have one or two tonic colonics a year.

Since then I have been on so many different meds and dosages that I've lost count. They didn't work, caused more seizures or the side effects were too bad. So you can't always count on the first med you are put on to be the one for you. Defiantly talk to your neuro about doing something with your meds.

One of the meds I'm on now is Keppra. I do have very bad kepprage on it. I don't have any problems being around people but sometimes I'll get so mad a someone on a drop of a dime that I want to punch them. I have a hard time being around kids and I used to love them.

With my meds I keep them in a daily pill case and an alarm set on my cell phone to make sure I take them on time. Even with these things I have missed a dose sometimes. I usually don't have a problems but there are times that I have.

 

[arnie]

Hello and welcome. First of all, I can relate to the denial. I had my first witnessed seizure when I was 23, (1982) and after maybe 6 or 7 months on dilantin, and seizure free, I decided I didn't need the meds any more. It took about a week or ten days to have another big seizure and get another ride to the hospital. I've been on meds ever since. I'm on lamictal now and have been for maybe 15 years. I also tried Keppra, Zonegran, and one other one that I'm forgetting the name of now. I hated all of them and had my neuro take me off of them and I went back to lamictal. I've never had good control of my partial seizures, and have several hundred a year. Probably the most I've had in a year is 500 or so. I've finally decided to get a VNS implanted because I clearly don't do well on meds, and also, although I've had fewer seizures this year (about 175 so far), something in the nature of the seizures or the seizure focus or the number of subclinical seizures is changing, and not for the better.
Anyhow, bottom line is that you may be in this for the long term and you need to be very proactive in your care. Learn all you can about epilepsy and don't be afraid to tell your neuro all of your symptoms and to let him know if the symptoms get bad enough that you want to change to a new med.
Finally, I would suggest that you keep a seizure diary, to record when (and if) you have seizures of any form, what meds you are taking (and the dosage) and what side-effects you are experiencing on a daily basis.
Best of luck! Keep in touch with us and let us know how you are doing!

 

[epileric]

I was on Keppra & had similar side-effects. I kept meaning to tell my neurologist but kept forgetting or just slept the day away (I'm sure you know those side-effects). I also had no clue how he would react even though he's never given me a reason to think he'd react negatively.

When I finally told the neuro after 3 months he sort of rolled his eyes as though I should have told him earlier & he weened me off the keppra right away.

I would suggest that you tell your neurologist ASAP.