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Frustration with Epilepsy, Medication, and Doctors.

Fri, 02/15/2019 - 23:11
Hello all. Thank you in advance to anyone who leaves feedback. I am a 24 year female, and was diagnosed with Epilepsy when I was 18 after experiencing 2 Grand Mal Seizures in my sleep on the same day. After all the blood work, EEG,EKG,MRI,CT Scan, etc. were done, it was determined that I have an under developed Frontal Lobe on the right side of my brain. I was told this was probably hereditary since I had never had any type of head trauma except for a mild concussion when I was about 12. That being said, no one in my family has a history of epilepsy. I was put on Keppra, 500 mg 2x a day , and told I would be on anti seizure medications for the rest of my life because of the abnormality in my brain. In the first few years, I would have Grand Mal Seizures in my sleep, and only know because of a chewed and bloody tongue the next morning. These seizures were rare, only a few times a year. Slowly the dosage of keppra was increased (in an attempt to eliminate the seizures all together), until I was having a hard time with the side effects of dizziness, fatigue, and trouble focusing. Through 3 -4 different Neurologists, I was started on Lamictal to potentially replace the keppra. The seizures continue, mostly in my sleep, occasionally waking from sleep just to go into a seizure, and only once was I awake and had a seizure in the shower. These are full on tonic-clonic Grand Mal Seizures. It's just over 6 years since I was diagnosed with Epilepsy and the seizures are getting worse and more frequent. I have had 1 seizure a month for the past 3 months. Twice I awoke from sleep and went into seizures, but today I was outside working and had one, luckily bystanders stepped in to help and called the paramedics. A couple of times I think I have had partial seizures, when my hands and face start to seize, but I do some deep breathing through my nose and the seizure subsides. I know to some this does not sound like a lot, but I am in so much pain for weeks after wards because of bites and mouth sores. Right now my dosage is 1000mg Keppra & 100mg Lamictal in the morning, and 1500mg Keppra & 100mg Lamictal at night. Obviously it is not controlling my seizures. Sometimes I can feel the seizures coming on, other times not. Occasionally I will get numbness and tingling feelings around my body, my face will get very hot all of a sudden, and I have chills constantly. Fits of extreme dizziness and light headedness are common, at the same time my limbs will start to feel very heavy. I know this part sounds ridiculous, but sometimes I just have a really weird "out of body" feeling. All of this has lead to chronic anxiety, about sleeping and being awake, depression, and frustration. No one can give me an answer why and I have yet to find a solution. Now that I have seizures at any time of day, I am scared to drive, uneasy being alone, worried about drowning, (I love to swim) and just have general anxiety about the next seizure. How does a person live like this!?! How do you have a job, how do you commute, how do you function!?! I am becoming increasingly interested in Medicinal Marijuana and CBD oils, but do not live in a region where it is legal. Please, If anyone has any advice, leave it here. Thanks for reading my story, I apologise for any typos. Stephanie

Comments

Have you seen an

Submitted by Amy Jo on Sat, 2019-02-16 - 10:35
Have you seen an epileptologist? Really recommend you see one. 

 I'm a 24-year old female

Submitted by Misjoey101 on Sat, 2019-02-16 - 14:37
 I'm a 24-year old female taking Keppra, Lamictal and Zonogram and still experiencing seizure activity. Maybe you have to grow up with the condition to really tolerate it.(mine started when I was 9 months old. Parents can be so controlling in high school that a bus pass in college seems like a miracle) I'll do my best to answer some questions though. 1. Transportation: the bus, Uber/Lyft, Amtrak/Metrolink, friends/family/coworkers and some towns even have custom transporation for people with disabilities 2.Jobs: Tell your boss/managers. Some companies and the federal government are even looking for people with disabilities to hire. I don't know where you live but CA has a state department called the Department of Rehab to help people with disabilities find jobs and keep them. 3.Swimming/Sleeping/ Death Anxiety: Honestly, my parents were paranoid enough when I was a kid:"don't chew gum. you'll choke and die." "don't swim in P.E.. You'll drown and die." "you can't walk to the bathroom by yourself. what if you have a seizure?" " we know you're 12 but this baby monitor is still in your room. what if you have a seizure?" The paranoia was prominent enough that it convinced me it just won't happen and life is lived without a fear of seizure-death.(chewing gum in high school was as rebelious for me as drinking under-age...or so it felt)4. Keppra Side Effects: Still haven't figured it out. Makes my life miserable. Tell me once you've figured that out.

 I am and have been on both

Submitted by msanders21989 on Sun, 2019-02-17 - 13:32
 I am and have been on both Keppra and will nickel for at least 15 years now .  I tried several medications before that .  It could very well be just trying different medications and dosages until you find one that works.       For me personally I know anxiety to be a trigger of my seziures: in  School when I had a major test coming up or had to get done on a tight deadline,  in the work place after having a rough day at work or anticipating a rough day the next day ,  getting frustrated with other coworkers,  getting time sensitive matters done on time,  as well as when the last time was I had a seziure.  For me, relaxation music helps. I get frustrated with a lot of coworkers and customers I deal with at work .  I devote a portion of my lunch break towards sitting in a quiet isolated area listening to relaxation music .  It always helps to call me down.  If you have a favorite song that you especially know all the lyrics to the next time you start feeling stressed start singing to yourself( it can be either out loud or in your head  ).        Living in the big city I commute to work by the city bus.  Otherwise I take Uber to places that the boss doesn’t go to or eight times it doesn’t run.      Those out of body experiences aren’t unusual.  It’s common to feel hot,sweaty,paniced,  or forgetful , after a seziure. It’s just simply part of the seizure  and nothing you can do about it .     Depending on your particular circumstances you may want to try suing for Social Security Disability.  You may also want to research the possibility of having a Vegas nerve stimulator implant .

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