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Epilepsy/Meds are Ruining my LIFE!!!!

Mon, 03/16/2009 - 21:21
Hi, I am 20 years old and I have had epilepsy for the last 4 1/2 years. I just got an MRI and my brain scans are off the chart. Apparently I am having mini-seizures in my brain. The most recent drug that I was on was Topomax. This drug literally made me stupid!. I couldn't concentrate, I couldn't speak correctly, etc....it was terrible....Now I am switching to Keppra, because Topomax wasn't controlling my seizures fully. BUT! Keppra is making me tired. I have no energy. I am a 20 year old college student. I need all the energy I have. At this rate I am going to fail out of school because of what these drugs are doing to me. I made it through freshman year because my classes where easy, but sophmore year is just too hard, with all this medical BULLSHIT! My doctor says that my concentration issues could be a result of my mini seizures in my brain. I'm considering taking a leave from college so I can get my health together, but they say that finding the right meds for you is a trial and error process that could take "awhile". I'm dying here. It sucks when you look in the mirror and you see your potential, but are not able to live it because of these god damn meds. Can anyone relate to this??????? It's driving me crazy. (btw I have had 4 seizures in my life. 2 in highschool and 2 in college) Also, the worst part about this is my parents just think I'm being lazy and I am not "trying hard enough".....Most of the time Ill be thinking one thing, but not be able to fluently vocally express it, because I'm so doped out on these psycoactive drugs. Can anyone relate here. I'm really downward spiraling.

Comments

Re: Epilepsy/Meds are Ruining my LIFE!!!!

Submitted by tonialpha on Wed, 2010-04-28 - 10:18

I have been all the medications.  I have been on test drugs too.  What is interesting I was a test patient for Tegretol.  I top Tegretol for 30 years. I went to school and worked 15 years on this medication.  Things changed for me when I had children.

Keppra was like sugar to me. Allergic to Topamax, Neurontin, and Dilantin.  Phenobarbital controlled seizures for about 2 years.  Klonopin helped me sleep thru the night.  Zonegran was great for me no real symptoms. I had break thru seizures.  Diamox, lamictal, Valporic Acid, et al.

Each patient has a different reaction.  Most of the medications make you drowsy.  When starting a medication it varies from patient to patient.  Drowsiness for me takes 2- 3 months the Epileptologist said it varies.  I have learned to deal w/ it.

Neurontin made me hallucinate and Topamax did the same thing.  Neurontin made me go into status epilepticus.

Vimpat for me made me have a lot of symptoms but it controlled my seizures.  My friend took Vimpat and had no symptoms!  I had to realize this is the medication for me.  I slept a lot.  I am on 800 mg.  at this time The information sheet stated the general high dosage is 400 mg.

The key for me is walking outside the symptoms go away, the stimulation of walking with my dog or a friend does the trick!

I have been all the medications.  I have been on test drugs too.  What is interesting I was a test patient for Tegretol.  I top Tegretol for 30 years. I went to school and worked 15 years on this medication.  Things changed for me when I had children.

Keppra was like sugar to me. Allergic to Topamax, Neurontin, and Dilantin.  Phenobarbital controlled seizures for about 2 years.  Klonopin helped me sleep thru the night.  Zonegran was great for me no real symptoms. I had break thru seizures.  Diamox, lamictal, Valporic Acid, et al.

Each patient has a different reaction.  Most of the medications make you drowsy.  When starting a medication it varies from patient to patient.  Drowsiness for me takes 2- 3 months the Epileptologist said it varies.  I have learned to deal w/ it.

Neurontin made me hallucinate and Topamax did the same thing.  Neurontin made me go into status epilepticus.

Vimpat for me made me have a lot of symptoms but it controlled my seizures.  My friend took Vimpat and had no symptoms!  I had to realize this is the medication for me.  I slept a lot.  I am on 800 mg.  at this time The information sheet stated the general high dosage is 400 mg.

The key for me is walking outside the symptoms go away, the stimulation of walking with my dog or a friend does the trick!

Re: Epilepsy/Meds are Ruining my LIFE!!!!

Submitted by staceinspace on Thu, 2010-11-11 - 11:21

GottaJ,

I am a doctoral student and have lived with epilepsy for over 22 years.  Your doctor is correct-there is an adjustment period for all medications and especially AED's or anti-epileptic drugs.

As epilepsy is personal, we all have an individual reaction to the medications.

I too was on a slew of drugs as well as Topamax the nickname being "dopamax" as it makes memory, speaking and many other brain functions muddled.  It felt like being in a mud bog inside my head taking that medication.

You can live up to your potential..you have to find a way to overcome your side effects.  Stay in school and deal with your symptoms the best that you can.

All seizure medications have side effects especially being tired.

I have three teenagers and had to leave my full time job as my epilepsy took away my mobility to drive to work.  But I am still in my doctoral program as I will not let epilepsy or the medications associated with it rob me of my education.

So you must make the decision that you have epilepsy and it DOES NOT HAVE YOU.

Many of my friends live with various diseases, conditions and disorders and are on medications, get surgery (I have had 6 not for epilepsy) and do not give up.

You are important as is your moving forward in your life.

I am currently on Keppra and it makes me very tired so i try not to compromise rest for studying or writing which I do a lot of as well as reading books that are dry as toast.

Many students live with epilepsy and the side effects.

I hope you stay in school and overcome these side effects.

We will always have epilepsy but we do not have to let it have us.  That is up to you.

But also know that medication switching is common as is the adjustment period.

Topamax did not work for me so I am on Keppra.

I could never "adjust" to Topamax ever.  I also had a serious reaction to it as well after months of taking it.

So AED's need to be monitored and it is a never ending battle with medications and their side effects for epilepsy my friend.  don't give up.  I believe in you.  :)

 

GottaJ,

I am a doctoral student and have lived with epilepsy for over 22 years.  Your doctor is correct-there is an adjustment period for all medications and especially AED's or anti-epileptic drugs.

As epilepsy is personal, we all have an individual reaction to the medications.

I too was on a slew of drugs as well as Topamax the nickname being "dopamax" as it makes memory, speaking and many other brain functions muddled.  It felt like being in a mud bog inside my head taking that medication.

You can live up to your potential..you have to find a way to overcome your side effects.  Stay in school and deal with your symptoms the best that you can.

All seizure medications have side effects especially being tired.

I have three teenagers and had to leave my full time job as my epilepsy took away my mobility to drive to work.  But I am still in my doctoral program as I will not let epilepsy or the medications associated with it rob me of my education.

So you must make the decision that you have epilepsy and it DOES NOT HAVE YOU.

Many of my friends live with various diseases, conditions and disorders and are on medications, get surgery (I have had 6 not for epilepsy) and do not give up.

You are important as is your moving forward in your life.

I am currently on Keppra and it makes me very tired so i try not to compromise rest for studying or writing which I do a lot of as well as reading books that are dry as toast.

Many students live with epilepsy and the side effects.

I hope you stay in school and overcome these side effects.

We will always have epilepsy but we do not have to let it have us.  That is up to you.

But also know that medication switching is common as is the adjustment period.

Topamax did not work for me so I am on Keppra.

I could never "adjust" to Topamax ever.  I also had a serious reaction to it as well after months of taking it.

So AED's need to be monitored and it is a never ending battle with medications and their side effects for epilepsy my friend.  don't give up.  I believe in you.  :)

 

Re: Epilepsy/Meds are Ruining my LIFE!!!!

Submitted by dannyboy on Thu, 2010-11-11 - 17:20

i have had seizures for over 20 years.  I did not let that stop me from getting an high school deploma or even an college degree in computer science.  Dont let that bring you down, living with epilepsy.  You have only had a few of sezuires in a couple of years, not trying to preace, but there are many more who are having them every day.  You are surely blessed.  Your doctors are doing what they seem to be the best for you.  Follow there lead, keep a straight head and all will turn out for the best.  Been there,  why me, was part of my every day living , until i found out that there are others out there worser off than i am and i had no right of saying that to myself.  dont take it so hard.  you control the seizures, dont let the seizures contol you from enjoying your life. u tc of yourself

i have had seizures for over 20 years.  I did not let that stop me from getting an high school deploma or even an college degree in computer science.  Dont let that bring you down, living with epilepsy.  You have only had a few of sezuires in a couple of years, not trying to preace, but there are many more who are having them every day.  You are surely blessed.  Your doctors are doing what they seem to be the best for you.  Follow there lead, keep a straight head and all will turn out for the best.  Been there,  why me, was part of my every day living , until i found out that there are others out there worser off than i am and i had no right of saying that to myself.  dont take it so hard.  you control the seizures, dont let the seizures contol you from enjoying your life. u tc of yourself

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