Patient Comments: Seizure (Epilepsy) - Effective Treatments

Question:

Please describe effective treatments with epilepsy (seizure disorder). Submit Your Comment

Comment from: Eugene V, 35-44 Male (Patient) Published: November 01

My son was diagnosed with epilepsy; on February 12, he had his first seizure. Then another on February 24 and nothing for almost 2 months, but unfortunately he started again on April 28 and since that day he is having seizures every day. He is on Keppra XR 2000 and started on Trileptal. He is in the hospital and the pediatrician is caring for him, but the bad thing is I cannot get the appointment with the neurologist. I was desperate, but I was reading the comments and I know my baby is not alone.

Comment from: leonie c, 19-24 Female (Patient) Published: February 18

I have been diagnosed with epilepsy for at least ten years after hard years of having absence seizure/petit mal heaps a day and tonic-clonic /grand mal seizures up to ten per day at least. Had medications that clashed with each other and brain surgery to remove a benign tumor which I don’t think helped. My bones and grades at school deteriorated pretty much. I got put on 200mg topiramate/Topamax and 2000mg levitiracetam/Keppra per day. It has decreased the seizures a lot, I am not scared as much to go out or be home alone without my partner. But it has messed up my life a lot, sad but true. At least finally it’s died down from literally ten a day over the past 5 years to a few a month roughly. I’m going out more and even getting back into studying for my certificate of cookery. I want to be a chef. Good luck everyone, hope you find the right medication because after at least ten years plus brain surgery removing benign tumor in my brain I have.

Comment from: Gail, 65-74 Female (Patient) Published: November 20

I have a seizure disorder that started when I was 32, I'm now 70. I took medicines for over 20 years and then got a Vagus Nerve Stimulator (VNS) in 1995. I had grand mal seizures for many years and this procedure has worked perfectly for me. I don't have anything anymore. I still take Zonegran at night, but no other medications. I'm on my 3rd VNS since the battery runs down. It changed my life. I can't say enough good things about it.

Comment from: chrissy stitches, 35-44 Female (Patient) Published: October 07

I've had grand mal seizures since I was 4yrs.old. I've been put on Tegretol, Dilantin, Depakote, and so forth throughout my teenage years and none did much. "Tegretol" only increased my seizures to having it every 5 minutes. That took alot out of me. I'm now 35yrs.old and been taking Lamictal 300mg 2x daily at night for about 2yrs. Since i'm planning on having a baby, he suggested I take 100mg in the morning and 200mg at night. I told him that I was going to have seizures but he didn't listen to me. I've had atleast 4 seizures since. "NOT GOOD." I went back to my Neurologist only to tell him, "I told you". I laughed about it. I am now back to 300mg. all at night and now I'm ok. I have an app. with him again and am going to ask him about this KEPPRA thing I've heard so much good news about....For all of you, pay good attention to your seizures. Write it down, date and time and how your day is going so that you can find out what may trigger it, then report it to your doctor....Thanks for hearing me out.

Comment from: stubby, 13-18 Female (Patient) Published: October 07

When i was first diagnosed with epilepsy when i was 6 months old they told my parents i wasn't going to mature past the age of 6 years old, and that i wasn't going to be able to walk, talk, or even write and read. now i'm in highschool taking all acedemic coarses with an IEP. this is because i kept being given different med since i was a kid and finally i was goven divalproex and it's helped a bunch!

Comment from: Norma, 65-74 Female (Patient) Published: September 25

I don't remember anything. I started having seizures from the time I had a fall and hit my head when I was 10 years old. I was ok for a long time and now the doctor has change my medicine and I'm back to epilepsy and I'm too old for this, 73 years now. I wonder how I can give my body to medical research so others won't have to go through this. I had a doctor a long time ago and he said my brain does 3 time the snaps a normal brain does.

Comment from: maria, 35-44 Female (Patient) Published: June 15

My daughter is 5 years old, has been healthy, and has been developing at a normal rate. I heard a loud thud and found my daughter on the floor. There was vomit on the bed and my daughter was on the floor. The epilepsy seizure lasted 15 minutes. It was so scary. She was jerking very violently, and her eyes were rolling in the back of her head. It was horrible. No one should have to see their child like that, my doctor is saying she's had seizures. She had an MRI, an EEG, and they did a spinal tap. After returning from the hospital, my daughter experienced vomiting, I could not bear to see my daughter going through this problem at this early age of her life.

Comment from: matt l., 35-44 Female (Patient) Published: May 30

I have a seizure disorder that started when I was 21, I'm now 36. I took medicines for over 15 years. I had grand mal seizures, I've tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. My seizures worsened as I aged. Yes, my life has been dramatically impacted by seizure for years, I went from doctor to many neurologists to an epileptologist trying to find a cause and cure for my seizures. I tried every medication and dosage imaginable but nothing seemed to work.

SLIDESHOW

What Is Epilepsy? Symptoms, Causes, and Treatments See Slideshow
Comment from: lily, 55-64 Female (Patient) Published: May 02

I have a seizure disorder that started when I was 21, I'm now 36. I took medicines for over 15 years, I had grand mal seizures I've tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. My seizures worsened as I aged. Yet, my life has been dramatically impacted by seizure for years, I went from doctor to many neurologists to an epileptologist trying to find a cause and cure for my seizures. I have tried every medication and dosage imaginable but nothing seemed to work.

Comment from: celestemoi, 35-44 Female (Patient) Published: October 07

I had 2 grand mall seizures (one at home in bed unaware of) drove myself to hospital unaware) about five years ago. Spent one week in the hospital intubated due to complications with asthma. Neourologist placed me on 100mg Lamictal twice a day and Carbatrol 300mg twice a day.Hospital had started Dilantin. Caused too many problem s My seizures now uncontrolled by lamictal carbatrol and Neuronten. Seizures are partial vision , /balance, Speech.unable to work.

Comment from: 25-34 Female (Patient) Published: April 15

I have epilepsy, and I was put on Keppra when my husband and I decided to have a baby. I am currently taking 1,000 mg twice a day and have been doing great. I had no problems while I was carrying my daughter, and she has shown no signs of having any side effects from me taking the Keppra.

Comment from: Isaac, 19-24 Male (Caregiver) Published: March 31

Taking large doses of vitamins generally does not help a person's epilepsy seizures and may even be harmful in some cases. But a good diet and some vitamin supplements, particularly folic acid, may help reduce some birth defects and medication-related nutritional deficiencies. Use of non-vitamin supplements such as melatonin is controversial and can be risky. One study showed that melatonin may reduce seizures in some children, while another found that the risk of seizures increased measurably with melatonin. Most non-vitamin supplements such as those found in health food stores are not regulated by the FDA, so their true effects and their interactions with other drugs are largely unknown.

Comment from: ally, 35-44 Male (Patient) Published: September 14

My head gets so wet because of night sweat while I sleep. I do have high blood pressure but otherwise I am healthy.

Comment from: Seizures, Female (Caregiver) Published: July 15

My 18 months baby girl got 7 episodes of epileptic seizures in the last 8 months. Six episodes were with fever and 1 seizure without fever. As of now we are using Valparin twice a day (3 ml and 3.5 ml), even then my baby is getting seizures. EEG and MRI scan reports are all showing normal.

Comment from: Dian, 19-24 Female (Patient) Published: May 01

I was born with hydrocephalus. I have had a new shunt put in me ten different times. Every time water/fluid would build up and the shunt would plug and then malfunction. I would always have a grand mal seizure, now I just have petit mal seizures. I am now on prescription drug Keppra XR 500 mg.

Comment from: kbent94, 13-18 Female (Patient) Published: March 20

When I was 6 years old I had my first seizure, at the age of 6 and then again at the age of 7 I had brain surgery. I wasn't diagnosed with epilepsy until I was 12 years old and began to have seizures again. Medication never seemed to work and obviously neither did brain surgery. To help control my epilepsy I sleep normal hours and try not to stress when times get rough. Weirdly that is all I need and I now have seizures once every other year.

Comment from: lolo, 45-54 Female (Patient) Published: November 03

I was in a motor vehicle accident when I was 9 years old and I didn't start having seizures until I was 33. At that time I had a baby and she was about 6 weeks and I had a gran-mal. I was on a few different medicines depakote along with topamax and I had tried dilantin and it gave me a rash. I am on Lamictal 200mgs and still on topamax 25mgs. I opted to have a partial hysterectomy because I felt that I was having seizures once a month every month around my menstrual period. I have to say it did make a difference but I do still have occasional seizures and dizzy spells that wipe me out. I realize seizures are a part of my life and I am also scared of them.

Comment from: Tracy, 25-34 Male (Caregiver) Published: February 25

My son had his first seizure at 21 years old. His seizures are horrible; they last around 15 minutes, and he has a postictal period anywhere from 1-10 or so hours. During these postictal periods, he arches his back and moans or cries or sometimes screams. He also tends to hurt himself. He had 40 stitches in both his hands after a seizure this last summer. He is having seizures, what seems to us, in a pattern. He will have them almost to the day every other month. The doctors say he isn’t a "text book" epileptic. They don’t know how to medicate him. He has been on Keppra for almost three years. They just decided to finally try another med last week and he will be starting Dilantin. He had a terrible allergic reaction to Depakote. We are really hoping that the Dilantin will give him a break for at least longer than a month.

QUESTION

If you have had a seizure, it means you have epilepsy. See Answer
Comment from: Missy, 25-34 Female (Patient) Published: October 07

I was diagnosed with epilepsy when I was 5 and used epilim for most m life until I decided to hav a baby and was switched to Keppra which worked great, my baby thank god is healthy and no signs of health problems. I'm going through a lot of depression and I'm trying to help myself positively but I feel alone and worthless.

Comment from: gustav777, 45-54 Male (Patient) Published: October 07

i am a 45y/o male. i started having seizures about 20 years ago. i now take keppra and depakote er,these control my seizures better than any thing else i've taken. we don't know the cause of my seizures. i want to tell all of you first if you are taking dylantin and feel weak,or have red rash talk to your doctor now! i must get my,sleep limit my computer time,cannot miss,or mistime my meds,and i learned on this website about large crowds. twice i,ve had petit mals at a casino...no more crowds for me thank you whoever you were.

Comment from: 25-34 Female (Patient) Published: August 26

I was hit in the head with scaffolding two years ago and suffered 6 subsequent seizures over a period of about a year. The doctor started me on Lamictal but I felt completely drunk on it and stopped immediately. I have been taking Topamax 200mg twice daily for about a year. I haven't had a seizure since Thanksgiving. So I feel this medication is working for me, as I would still like to have another child someday. I just know I need plenty of rest each night and must avoid bust and loud crowds. At first I thought I was handed a death sentence but I am managing well and the torn tissue in my brain in healing. I have read all your stories and can empathize with each of you. No one really understands unless you've been there. It’s incredibly frightening to wake up and not know where you are or what happened or where your kids are etc. etc. We will make it through this. We all have our cross to bear. I wish you all the luck in the world and of your medication isn't working for your ask your doctor about Topamax. Good luck to all of you and feel free to send me a message.

Comment from: i don't believe it, 55-64 Female (Patient) Published: August 21

I have just been told I am having seizures; my kind of seizures is so different from all the others I have heard about. Three years ago I went to my doctor with dizziness, weakness, and unstable walking at times. I had an MRI done, they found nothing, so I was put on Prozac which I refused to take, after three years I went to another doctor who did an EEG right after one of those dizzy spells and found out that I was having seizures. He told me I had them at first on the left side of my front lob now it is on both sides. He started me out on Dilantin 300mg, but it was making me very sick, so now I’m starting on divalproex er 500mg. If anyone out there is having dizzy spells, make your doctor listen to you, have an EEG done within 24hours, it will show if you are having seizures.

Comment from: 05trish05, 19-24 Female (Patient) Published: July 15

Oh man, where do I begin? I'm now 22 years old, but I discovered I had epilepsy during 8th grade when I woke up not knowing who I was in the hospital on the first day of spring break, and that pretty much explains my years during high school. I took Keppra, Depekote, Topamax and a bunch of other drugs and never once did any work. It wasn't till senior year of high school during brain surgery to remove my temporal lobe that it was discovered that the cause of the seizures was hidden tumors! After the stroke and spending a month in the mental rehab center is when I recovered how HAPPY you should be for what you have! I'm now majoring in psycho and want to express how happy you should be for what you have! From being home schooled to not being able to walk up stairs! I'm SOOOO thankful for not having seizures anymore! I am taking Keppra for the rest of my life, although the side effects aren't even close to what I've had to experience in the past! I'm thankful for all of this!

Comment from: 19-24 Female (Patient) Published: June 05

I have been having seizures for a few years now. I went to a doctor and they told me they thought it was from anxiety and that there was nothing else wrong with me, but they have been wrong sometimes I have them even when I am not stressed out. I had one the other day in a library and woke up in an ambulance. I didn’t know what happened and had pretty much forgotten all the things that had happened. I had done earlier in the day it is becoming a big burden because it is painful and it is stopping me from doing a lot of the things that I need to do to keep my life on track, but either doctors won’t see me for different reasons, or I don’t have the money to see them the hospital put me on dilantin, but if it works. I don’t know if I will be able to continue to take it if I don’t see a doctor.

Comment from: NYCgal, 55-64 Female (Patient) Published: May 01

I had a grand mal seizure 4 months ago in Walmart! I am on Neurontin, however, I had another seizure Friday. I have no family history of seizures! I am worried.

Comment from: stare, 35-44 Female (Patient) Published: November 27

I have been living with seizures since the age nine. Almost everyone has seizures in my family. My father, uncle, sister and maybe others. I take Tegretol. I still have seizures but not as much.

QUESTION

If you have had a seizure, it means you have epilepsy. See Answer
Comment from: cowgirl31, 25-34 Female (Patient) Published: November 20

I think my seizures have gotten a lot better since my teeth have gotten out and that I have gotten my dentures. I am doing a whole lot better since. I have had seizures since I was born and I hope things get better for you all like it did me.

Comment from: Sudhakar Puraanam, 35-44 Male (Patient) Published: April 15

I had two episodes of generalized tonic-clonic seizure (GTCS). One was at the office and I lost consciousness and was unable to get up immediately. The doctor suggested a drug called Levipil. Since taking it, I haven’t had a seizure.

Comment from: Eva, 45-54 Female (Patient) Published: April 05

It is very important to remember you medication everyday and on time or else you can cause the brainwaves to start in another area, which can cause the next shock again, and you will have another seizure!

Comment from: Suresh, 65-74 Female (Caregiver) Published: January 19

I am a 26-year-old female and had my first seizure at 13. It was early in the morning while I was in bed. I did not take any medicine. The next seizure came after five years. I did not use any medicine. The third seizure came after three years when I started my post-graduate engineering studies. Then last month, I had my fourth seizure. I have just been to a neurologist and had a long meeting. He suggested Lamotrigine. As I am a chemical engineer, I immediately noticed the very bad side effect of this medicine.

Comment from: Forrelli, 45-54 Male (Patient) Published: May 23

I took dilantin and phenobarb to treat my epilepsy.

Comment from: Katie, 25-34 Female (Patient) Published: March 25

I got diagnosed 6 years ago when I was 21. I was sleeping and woke up to my mom screaming at me to wake up. I don't remember what happened, but I bit my tongue really bad, and had a really bad headache. I went to the doctor the next day; they ran some tests and told me I have Epilepsy. When I have a seizure I get really tired and have a horrible headache and want to sleep all day. I have tried many different types of meds but nothing seems to help. I have switched doctors because I felt the doctor I had was not doing anything to help me. I feel the doctor I have now is doing better and is trying to figure out my meds. My old doctor had me on 7 different meds, and this new doctor dropped me to 3 so I feel better.

Comment from: topkoolbig, 45-54 Male Published: September 01

I have had seizures or epilepsy since I was 16 years old. I can feel mine coming on most of the time. I set myself in a safe place. I have tried depakote, dilantin, phenobarbital, gabapentin; some others that I have forgot. It is a complicated disease meaning what might be good for you might not be good for me, but I will tell from my stand point, it starts with just looking up or anything in general. It has to do with muscle control, there are a lot of drugs out there that doctors will push on you just to see what the effect is. My choice is valium.

Comment from: Sephy G, 13-18 Female (Patient) Published: August 21

I have epilepsy and was diagnosed when I have epilepsy and was diagnosed when I was 6 months old. I am currently taking divalproex and my neurologist said that can have negative side effects on my ovaries and the problem is that I have been on every medication out there except one that is only in the testing stages right now.

Comment from: lisa, 45-54 Male (Caregiver) Published: August 12

My husband has been having seizures on and off for many years. We have not yet found the right medication to take care of these seizures. He has seen doctor on top of doctor and still no help with them. We just don’t know what else to do. He is right now on 1600 mgs. of different kinds of medications. I think it is to much because it still isn’t doing any good every time he goes back to the doctor they want to keep increasing or put him on another medicine. It’s really getting to be a scary time to have to try to figure what else can be done. to do...

Comment from: Refilwe, 25-34 Female (Patient) Published: August 12

My sister has been on the medication for over 12 years now she has twitches even if she is drinking her medication 12 hourly and is having seizures quick and often, she has a very huge appetite and if she gets hungry she starts to twitch.

Comment from: workshigginst, 45-54 Female (Patient) Published: August 12

I had my first seizure. To make a long story short, I have Seizure Disorder. It took the doctors 4 years in which we experiment with other drugs until we finally tried Keppa. After I get the dosage where it needed to be my seizures are finally under control. I went 4 years without a single seizure, but with me stress is the cause for my break through seizures.

Comment from: mother, 13-18 Male (Caregiver) Published: August 12

My daughter is newly diagnosed with epilepsy; on May 13 she had her first seizure. Then another in May 22 and nothing for almost 2 months, but unfortunately she started aging on July 27 and since that day she is having every day. She is on Keppra XR. 2000 and today started on Trileptal. She is in the hospital and her pediatrician the bad thing can not get the appointment with the neurologist. I hope this week we can get one. I was desperate, but I was reading your comments and I know my baby is not alone.

Comment from: Worried, 25-34 Female (Caregiver) Published: July 15

Today I stood by as a young boy, working with me had a seizure! I don’t know much about the disorder. I stayed calm, put a cushion underneath his head and calmly told him to calm down. He's on medication, but I think it might not be enough, because he has had 3 seizures within the last week! Is that normal? He has them very badly too.

Comment from: 45-54 Female (Patient) Published: June 05

I recently had a grand mal/tonic clonic seizure in December my first one started out taking Dilantin 300mg QHS. Then I began to get nauseated and confused it lasted about 3-4 minutes now taking Keppra XR 1000mg QD and Dilantin 300mg QHS to see how its going to work out, so far it seems to be working, but I am very weak and I just started waking up with dull headaches. I refuse to give up!

Comment from: seizegurl, 13-18 Female (Patient) Published: June 04

I'm in my teens, and was diagnosed at 13 on vacation. I was put on Lamictal and still take it. 100mg twice a day. It works really good for me. I haven't had a seizure since. I have my drivers permit, and I'm looking forward to going into neurology. I have good grades, and I don't feel handicapped in the least. The best treatment is not to let it hold you back.

Comment from: avalanche, 35-44 Male (Patient) Published: June 04

The most important part of epileptic patients is that they require a peaceful sleep. In addition to sleep other important aspect is regular exercise for fitness and balanced diet.

Comment from: 19-24 Female (Caregiver) Published: March 27

My daughter has been on Depakote, Lamictal and Keppra. She has achieved the best control on 4000mg of Keppra. It is a lot I know, but it works for her.