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Epilepsy/Meds are Ruining my LIFE!!!!

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

yes i know where you are at.  that is from my view.  there is no way to find the right drug, other than trial and error.  the different types of seizures and different types of body responses  letting the meds take some time to see if they are going to work.  some of the side effects go away.  your brain can adapt.  it may take several tries.  i know that i am a little dew drop from heaven.  what you are experiencing is just what the doc is telling you.  there is really no such thing as a mini seizure.  the activity is seen, and, abnormal, and has changes in the way pattern.  the outside signs may not be there , but the inside is.    You have had more than 4 seizures.

as far as parents are concerned,  if they wish they may contact me direct, useing my e-mail address.  ish4031eagle@aol.com.  i can give them information and answer questions, that they may not know the answers to.  some times when it comes to something like this.  the words from someone else drip from the lips of God.  That is what my wife tells me, when we don't see eye to eye.  You may have to with draw from your class.  What i found helpful was several methods of information exposeure and several times.  the more links in the brain to the information the more likely you are to remember.

thought and speech issues.  slow down and let the thought form.  you may have to start out repeating the thought in you head a couple of times before you speak.

i have had seizures for 48 years.  every type in the books and a few other.  I went to college and have a degree in science.  i found a drug that allowed me some success.  i still have 20 seizures a month.  I also have a vns implant.  that's my thoughs.   I hopeit helps.  rikk

 

Hugs and hang in there*** Both my kids genetic epileptics and its not easy but it is doable.  The hardest part is getting the meds right.  The keppra kicking your butt right now.  My daughter as well.  I'm told it will pass once you are used to it in a few months. If not, maybe its not the right med for you. I also know good sleep habits a MUST... no and, ifs, or buts about it.  You must sleep well to preform well.  Your diet must be healthy.  No diet soda, junk foods, and missing meals.  All that adds to more issues you don't need.  You must exercise or get out every day.  Yoga, mediation, something to relieve stress. None of these will cure it but they should help you alittle bit. 

I wish you well and we are all here for you.  Also look into a 504 Plan for College.  My son has very high intelligence and yet he has one t help him.

 Be well and good luck

joan*

 

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Son lamictal 175 2x 19 Grand Mals - Stable Daughter keppra 750 16 Juvenile myclonic - Not stable yet Both had first issues at 15 - Both JME - gotta love puberty : ) * Both dealing with

I know exactly how you feel.  I was just diagnosed 7 weeks ago.  I am a 27 y/o who graduated with my Master's degree a few months ago and I don't even know how you are able to consentrate or function.  the fact that you are so determined is so encouraging to me.  I was offered a job ( a really great job!) which I accepted, but after my first seizure I have not been able to go back to work (medication adjustment and the med-keppra is just not working).  There's no way I could work when I feel this out of it and tired. I send you my support while trying to get though college while dealing with this. I remind myself every day that I am so fourtunate that my first seizure came a few weeks after I graduated, otherwise I KNOW I would have had to taken a leave of absence.  If that is the route that you're considering, bear in mind that I am going through the same thing with my job right now...should I just tell them to hire someone that can actually come to work and do the job or ask them to please wait for me while I 'adjust' to this new diagnosis and medicine.  I'm struggling so much with the decision.  Before all this happened I viewed myself as intelligent, sharp and happy.  I graduated at the top of my class.  Now, almost 2 months later, I don;t even feel like the same person.  I'm struggling with balance, forming sentences and still having violoent twitching every day (I have partial-onset simple seizures).  I seems like I am not the same person when I look in the mirror and it makes me feel like I'm losing the person I once was.  However, I have to believe that I will eventually get back that to that person, and I encourage you to keep a daily journal of how you feel to see the small improvements that you may otherwise miss.  This and this alone has been what's reminded me that i am, in fact getting better...just REALLY slowly.  I hope this helped, i will be interested in seeing what you decide, as I will be making a similiar deciosn myself. Good luck!!

 Sorry to hear about everything ! Sometimes life is so maddning when we have to deal with Epilepsy and all that goes along with it. It definetly feels like we are all alone at times. It  can be tough but it is OUR life and our job to enjoy what we can. YES. OH YES, I've been on Keppra XR for a little over a month now and the 1st  three weeks were awful, my eyes felt like 10lb bowling balls and I always felt like I just got hit by a bus HOWEVER, I think my body finally is ajusting and it is worth it .....you see I was having drop seizures at a crazy uncontrolable rate...I just broke four front teeth and screwed up my knee on a couple of those seizures. And, now that I've started Keppra I haven't had any more drop seizures and i'm not losing time away from work. I have had Epilepsy for 30 years been on atleast 10 different meds and NOTHING controls them. I still have petimal spells daily and night myoclonic seizures nightly. But, the combo of keppra and Dilantin(been on that 20 years) has reduced the amount of them alot but they just won't go away. My VNS dosen't really do anything for me so times can seem frustrating.....but that's me it's who I am and will always be because of a long high fever when I was very young. It also makes me stand out and be pround that I can still work,got married, do what I want for the most part. I'm not a canidate for an operation and I'm not going to get better so I just accept that aleast I can still do alot. I have problems too with my brain sometimes thinking one way and not always saying what I mean. Hey, that's what makes us a team. We have got each other and we can understand another epileptic well. Meds suck but they do help somewhat without them you could be so much worse off. I understand ,just take those meds and see what time brings your better off and enjoy it. it could be so much worse but I know it doesn't make it any easier.  Good Luck!

Hey

I sort of understand how you feel. I'm a 19 year old college sophmore and while my meds are not giving me the same side effects you have I understand the extra stress it adds. I get tonic- clonic seizures when I miss a dose or dont get a lot of sleep which is hard to mange at school. I've ended up having a seizure right outside of my organic chem lab because it was 8 am... I was just happy I wasnt actually in the lab yet. I had a seizure in front of my old roomate who freaked out and told me I gave her nightmares... needless to say I moved out a few weeks later. I had one before a test and couldnt focus on it because I was exhausted, and have most reccently broken my laptop durring a seizure. The best thing I can suggest if you don't want to go on medical leave is be upfront about it. Most prof are understanding and just want you to do well, so if you explain it to them early enough and ask for more time on a paper because you'll be sleeping twice as much as the averge student they will almost always understand. Most colleges will offer extra time on tests if you have a serious imparment focusing, I dont need extra time but I know some friends who get it. And if you can avoid generic drugs... when I went on the generic form of lamictal I started to have more seizures even when I wasnt missing doses or staying up late.

This is so true. Take advantage of the disability office availability, even if it is embarassing. Professors are understanding about neurological/brain issues.

Hey, I'm on Keppra and Lamictal. I have also been having the tired/fatigue issues. I'm in college as well, about to graduate. I'm thinking it is from the stress of finals and school work, but I know the medication's side effects include fatigue. Unfortunately the trail and error of finding the right medication is how it happens. It sucks being this young and not be able to go out and do the things everyone else is doing. My advice is to just get a study partner. It has kept me accountable for my grades. I'm so sorry you're having to go through this. I'm experiencing the same thing. If you really want to take some time off from school I'd recommend one semester. I'm graduating a semester late because I had to take a really light course load one semester. I don't know if this will be helpful to you, but just know you aren't the only one in this kind of situation.

 Hope things get better for you soon 

I was diagnosed 7 weeks ago as well- almost 8. I am on 1500mg keppra a day and 750 mg depakote.

I was on Keppra for 5 weeks, then I had 24 seizures in 36 hours. 1st he added tegretol. I took one 200mg tablet and that was it- it made me so sick and exhausted/drunk feeling.

Now I am on Depakote. I am still tired, and am still having my nocturnal seizures. I can't tell if the med is not working or if its because my period is coming though. I am so tired of being worn out.

I just raised my child and this was going to be the start of the second half of my life. I did not expect to be more tired than when I had a newborn :)

I went through 5 different meds when i was first diagnosed 12 years ago, all on my own decision because i didnt like the way they effected me. All I can say is be honest with your nuerologist, because all they are really trying to do is return you to a regular life as possibe, and hang in there. Dont be afraid to ask questions and work with your doctor to make you happy :).

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!

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.  :)

 

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

Epilepsy does not have to take away what you want from life.  You can do it, but one of my biggest regrets is NOT taking time off school sooner.  I had seizures for almost a year while in school, and wasn't sure what they were.  I have had a long journey with different doctors that led me here.

I was in school studying pre-med and wasn't remembering much and was exhausted all the time.  I started "passing out" in the mornings and missed school some days.  I also am a single mother, so after a long period of denial that there was a problem, I put what energy I had into taking care of myself and my child. 

I have lost a lot...my scholarship, grants, etc. because I made a medical withdrawal.  I had too much on my plate and school was the only thing I had left to give up.  I miss it sooo much and cannot wait until I get back into it!  If you can stay in school and give up something else, then please do.  If you have to take time off to take care of YOU, then you aren't alone!

Follow the path that will make you happiest.

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