Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
Ok, short post today, but I think this is pretty interesting.
According to epilepsy.com individuals with one disorder are at least twice as likely to have the other. In addition, people with close family members who suffer from a seizure disorder are also more likely to have migraines.
So basically, if you're epileptic, you have a much higher chance of having migraines than the general population. Which quite frankly sucks. I have horrible migraines and tension headaches, and when I told my neurologist about them, he told me that he'd been waiting for that visit.
Migraines, like seizures, are caused by excess electricity in the brain, which explains why so many of us are on an AED like Topamax as a migraine preventative. The link between migraines and epilepsy appears to be stronger in those with a family history of epilepsy, like me and Sammy.
Migraines can be preceded by an aura, just like a seizure. Migraines are typically accompanied by nausea and extreme sensitivity to light.
http://professionals.epilepsy.com/page/migraine.html
http://www.epilepsyfoundation.org/news/Epilepsy_And_Migraine.cfm
Tuesday, July 30, 2013
Monday, July 29, 2013
Keppra and Throwing Frogs
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
Keppra is available in 4 different doses (250, 500, 750 and 1000mg) and as a clear, grape flavored liquid (100mg/mL).
Keppra is unlike any other anti-epileptic chemically. Meaning it does not belong to any of the classifications of AED's that existed when it was discovered.
I want to talk about some of the very real side effects of Keppra that, fortunately for those of you who have been perscribed it, are considered to be very rare. The purpose of this post is not to dissuade you from using this product, but to offer you a little perspective, and to warn you that these posted side effects are possible, and are NOT put on packaging simply for liability reasons.
I was prescribed Keppra when I was first diagnosed, and things went from bad to worse in less than a week. My seizures stopped completely; that was great. The drug certainly does it's job. But after just a few days, I started feeling a little homicidal. Everything made me angry, including frogs croaking in my backyard, which is why my sisters call it the "frog throwing medicine", I'd get so angry about it, I'd pick them up and throw them over the fence. Every person who so much as looked at me wrong got some pretty innapropriate language. I was mean. I was mean to my mom, my sisters, my dad, everyone except my sweet old hound dog, who knew when I was going to have a seizure.
After about a week and a half, the borderline suicidal thoughts started creeping in. I wouldn't say that I wanted to kill myself, but I definitely didn't want to be alive. I didn't want to eat, write, watch tv, or do any of the things I normally loved. Yes, I love food. Stop laughing.
After about a month, I was unbearable, even to myself. I couldn't stand the person I saw looking back at me, and decided I'd rather have seizures.
I kind of shock myself saying that out loud sometimes, because seizures are pretty much the most horrible thing in the world, right? Well, even Keppra me agreed that the way I was living on this drug was worse than having seizures. So I got off of it after taking it for almost two months.
My doctor prescribed me Lamictal, and I've been taking it ever since. I had a few seizures when I first started Lamictal and a couple when I got the stomach flu, but otherwise it has worked amazingly, and I'm blessed to live a relatively normal (ok, not "normal", but I'm happpy, see :D)life.
The most common side effects of Keppra are drowsiness, dizziness and weakness, which usually resolve in the first month of taking the drug.
Serious side effects are loss of coordination, mental/mood changes (such as irritability, aggression, agitation, anger, anxiety).
http://www.rxlist.com/keppra-drug.htm
Keppra is available in 4 different doses (250, 500, 750 and 1000mg) and as a clear, grape flavored liquid (100mg/mL).
Keppra is unlike any other anti-epileptic chemically. Meaning it does not belong to any of the classifications of AED's that existed when it was discovered.
I want to talk about some of the very real side effects of Keppra that, fortunately for those of you who have been perscribed it, are considered to be very rare. The purpose of this post is not to dissuade you from using this product, but to offer you a little perspective, and to warn you that these posted side effects are possible, and are NOT put on packaging simply for liability reasons.
I was prescribed Keppra when I was first diagnosed, and things went from bad to worse in less than a week. My seizures stopped completely; that was great. The drug certainly does it's job. But after just a few days, I started feeling a little homicidal. Everything made me angry, including frogs croaking in my backyard, which is why my sisters call it the "frog throwing medicine", I'd get so angry about it, I'd pick them up and throw them over the fence. Every person who so much as looked at me wrong got some pretty innapropriate language. I was mean. I was mean to my mom, my sisters, my dad, everyone except my sweet old hound dog, who knew when I was going to have a seizure.
After about a week and a half, the borderline suicidal thoughts started creeping in. I wouldn't say that I wanted to kill myself, but I definitely didn't want to be alive. I didn't want to eat, write, watch tv, or do any of the things I normally loved. Yes, I love food. Stop laughing.
After about a month, I was unbearable, even to myself. I couldn't stand the person I saw looking back at me, and decided I'd rather have seizures.
I kind of shock myself saying that out loud sometimes, because seizures are pretty much the most horrible thing in the world, right? Well, even Keppra me agreed that the way I was living on this drug was worse than having seizures. So I got off of it after taking it for almost two months.
My doctor prescribed me Lamictal, and I've been taking it ever since. I had a few seizures when I first started Lamictal and a couple when I got the stomach flu, but otherwise it has worked amazingly, and I'm blessed to live a relatively normal (ok, not "normal", but I'm happpy, see :D)life.
The most common side effects of Keppra are drowsiness, dizziness and weakness, which usually resolve in the first month of taking the drug.
Serious side effects are loss of coordination, mental/mood changes (such as irritability, aggression, agitation, anger, anxiety).
http://www.rxlist.com/keppra-drug.htm
Sunday, July 28, 2013
Epilepsy and Pregnancy
Disclaimer: I am not a medical professional and you should always discuss any health concerns with your doctor. This blog draws on my personal experience and research and the information contained should not substitute advice or directions from your doctor.
So, I was reading the other day that parents with JME have about a fifteen percent chance of having children with epilepsy, since JME is so often hereditary. So that got me thinking about epilepsy and pregnancy/having children, in general.
First, let's talk about your AEDs. If your doctor feels like it's an acceptable risk for you to stay on your AED (anti-epileptic drug), which he usually will, he may raise your dose, because of the increase in blood volume during pregnancy, rather than lower it. He may also raise your dose if you are on Lamictal or Keppra, because your body will use more of these two drugs.
On the other hand, if you're taking drugs such as carbamazepine, phenobarbital, phenytoin, primidone or valproate, he may lower your dose, to decrease potential harm to the fetus. These medicines are known to cause congenital birth defects such as spina bifida, cleft lip/palate, and certain heart defects, which could severely lower your baby's quality of life.
Polytherapy (taking more than one drug to control seizures) is NOT recommended during pregnancy, so if you are already taking more than one AED, you may want to see your neurologist immediately if you become pregnant.
More than likely, if you are a woman of childbearing age, you are already on a folic acid supplement. There is evidence that some AED's deplete folic acid levels in your body and that this is the cause of neural tube defects associated with AED's. I was not told why I was on it, which is why I'm saying this, but DO NOT STOP TAKING YOUR FOLIC ACID IF YOU BECOME PREGNANT!!! That's one of the biggest reasons you're on it, along with heart health. If you are not already on it, the folic acid present in a prenatal vitamin may not be enough, and you should talk to your neurologist and a high risk OBGYN to determine if it is necessary to begin supplementation.
Now, let's talk about your seizures. Absence seizures, simple partial seizures, and complex partial seizures during pregnancy typically are not dangerous to a fetus unless you injure yourself, which is rare. Tonic clonics on the other hand, can be very dangerous because of the risk of injury to the abdomen, and the interruption of your breathing. When your baby's developing body is deprived of oxygen during a convulsive seizure, his heart rate can slow for up to thirty minutes after your seizure is over. Repetitive or prolonged convulsive seizures during pregnancy can seriously damage your baby's brain and other organs. Convulsive seizures are most damaging to the baby in the third trimester, when his brain will need more oxygen.
I have some statistics for you:
Most doctors will recommend you breastfeed your baby, as more of your AED reached the baby during pregnancy than is present in breast milk. Ask your neurologist and OBGYN if you have any concerns.
Now lastly, I want to give you some good tips for caring for your baby if your seizures are not completely controlled:
http://www.epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Pregnancyandparenting-1
http://www.ncbi.nlm.nih.gov/pubmed/22327733
http://www.webmd.com/epilepsy/guide/parenting-concerns-women-epilepsy
So, I was reading the other day that parents with JME have about a fifteen percent chance of having children with epilepsy, since JME is so often hereditary. So that got me thinking about epilepsy and pregnancy/having children, in general.
First, let's talk about your AEDs. If your doctor feels like it's an acceptable risk for you to stay on your AED (anti-epileptic drug), which he usually will, he may raise your dose, because of the increase in blood volume during pregnancy, rather than lower it. He may also raise your dose if you are on Lamictal or Keppra, because your body will use more of these two drugs.
On the other hand, if you're taking drugs such as carbamazepine, phenobarbital, phenytoin, primidone or valproate, he may lower your dose, to decrease potential harm to the fetus. These medicines are known to cause congenital birth defects such as spina bifida, cleft lip/palate, and certain heart defects, which could severely lower your baby's quality of life.
Polytherapy (taking more than one drug to control seizures) is NOT recommended during pregnancy, so if you are already taking more than one AED, you may want to see your neurologist immediately if you become pregnant.
More than likely, if you are a woman of childbearing age, you are already on a folic acid supplement. There is evidence that some AED's deplete folic acid levels in your body and that this is the cause of neural tube defects associated with AED's. I was not told why I was on it, which is why I'm saying this, but DO NOT STOP TAKING YOUR FOLIC ACID IF YOU BECOME PREGNANT!!! That's one of the biggest reasons you're on it, along with heart health. If you are not already on it, the folic acid present in a prenatal vitamin may not be enough, and you should talk to your neurologist and a high risk OBGYN to determine if it is necessary to begin supplementation.
Now, let's talk about your seizures. Absence seizures, simple partial seizures, and complex partial seizures during pregnancy typically are not dangerous to a fetus unless you injure yourself, which is rare. Tonic clonics on the other hand, can be very dangerous because of the risk of injury to the abdomen, and the interruption of your breathing. When your baby's developing body is deprived of oxygen during a convulsive seizure, his heart rate can slow for up to thirty minutes after your seizure is over. Repetitive or prolonged convulsive seizures during pregnancy can seriously damage your baby's brain and other organs. Convulsive seizures are most damaging to the baby in the third trimester, when his brain will need more oxygen.
I have some statistics for you:
- Only 20% of women have an increase in seizure frequency during pregnancy
- You have a 90% or better chance of having a healthy baby; this number is even higher if you plan the pregnancy with your doctor and a high risk OBGYN
- 1-2% of babies born to the general population will have a major birth malformation
- 4-9% of babies born to a mother on AED therapy will have a major birth malformation
Most doctors will recommend you breastfeed your baby, as more of your AED reached the baby during pregnancy than is present in breast milk. Ask your neurologist and OBGYN if you have any concerns.
Now lastly, I want to give you some good tips for caring for your baby if your seizures are not completely controlled:
- Dress and change your baby's diaper on the floor
- Sponge bathe your baby on the floor if no one is around to assist you with bathing
- Carry your baby in a padded sling
- Breastfeed your baby on the floor if possible to minimize falls, or purchase a breast pump and bottle feed on the floor or in a bounce seat.
- Make sure you have a bumbo seat for your baby and feed him/her on the floor once he is eating solid food (a bumbo seat is very sturdy and low to the ground and will not tip if you knock into it during a seizure)
http://www.epilepsysociety.org.uk/AboutEpilepsy/Epilepsyandyou/Pregnancyandparenting-1
http://www.ncbi.nlm.nih.gov/pubmed/22327733
http://www.webmd.com/epilepsy/guide/parenting-concerns-women-epilepsy
Saturday, July 27, 2013
Painfully Familiar
Yesterday was my story, now it's Sammy's turn. Sammy is my thirteen year old sister. The best way to describe Sammy is sunshine. She is the happiest, most amazing girl in the world. She's the light of my life, and I would do anything she asked of me. Sammy has always been a lot like me. Scatter brained, creative, clumsy. But when I was diagnosed with epilepsy, we didn't think much about her being epileptic as well. Back in 2011, Sammy had her first seizure. She was playing video games with our sister Emily, and then Emily said "Sam? Mom, something's wrong with Sam. She's having a seizure!" So of course, after everything with me, my mom ran to me, confused, looked me up and down, looked at Emily, looked at Sam then realized, it was happening all over again. I think for all of us, it was the most sickening feeling we'd ever had. I knew what it was like to wake up in the hospital, realizing what had happened. I knew what it was like to ache all over. I knew what it was like to not have control of my own body. But I'd never had to watch someone I loved so much experience something I knew to be so horrible. I was so angry. Why her? Why my beautiful, innocent, sweet, amazing baby sister? I don't know who I blamed. I knew it wasn't god's fault. It wasn't my fault. But some part of me was just so outraged that she of all people had to experience it.
So Sammy was diagnosed with Juvenile Myoclonic Epilepsy, just like me, and she was put on the same meds as me, and much quicker than I was, thanks to her amazing pediatrician at the time. She only had four seizures total, and luckily she doesn't have postictal psychosis. So with any luck, she can get her drivers license when she's 16, and live a normal life...
We have so much to be thankful for. For me and Sammy, we have each other. I wouldn't wish epilepsy on my worst enemy, but at least she has me, at least I have someone living under the same roof that understands me. Yes, I still live with my mom : / Stop laughing ;)
Epilepsy isn't racist, it isn't sexist, and it doesn't care how wonderful or bright your future is, it's victims are each different and epilepsy is different for all of us. Our experiences are different, but this beast ties us all together.
So Sammy was diagnosed with Juvenile Myoclonic Epilepsy, just like me, and she was put on the same meds as me, and much quicker than I was, thanks to her amazing pediatrician at the time. She only had four seizures total, and luckily she doesn't have postictal psychosis. So with any luck, she can get her drivers license when she's 16, and live a normal life...
We have so much to be thankful for. For me and Sammy, we have each other. I wouldn't wish epilepsy on my worst enemy, but at least she has me, at least I have someone living under the same roof that understands me. Yes, I still live with my mom : / Stop laughing ;)
Epilepsy isn't racist, it isn't sexist, and it doesn't care how wonderful or bright your future is, it's victims are each different and epilepsy is different for all of us. Our experiences are different, but this beast ties us all together.
Thursday, July 25, 2013
Interrupted
First of all, welcome to my new blog! This is just my introduction, however, it's going to be all about life... postictal of course. How to go on after your diagnosis of epilepsy, a wealth of information to arm yourself with when you're faced with people who don't understand, and hopefully a safe haven for those of you who feel alone.
First off though, I want to tell you my story.
When I was sixteen years old, I was diagnosed with hypothyroidism. I didn't think too much of it at the time, because as young as I was, the only thing it was affecting was my weight. So I started taking medicine for it, and I slimmed down significantly.
Afew months after that, I started really struggling in school. My doctor diagnosed me with ADHD. I was put on Strattera. On halloween night, twelve days before my seventeenth birthday, I had my first seizure. I was watching a movie upstairs at my grandparent's house, and my grandfather heard a crash. He ran upstairs to find me having a convulsive seizure. He tried to wake me after, (bad idea) and I can remember him saying my name... I could hear him, but I couldn't see him. My eyes were open, but my sight was gone. I was rushed to the hospital via ambulance, where I didn't recover from my seizure normally. I bit a nurse and kicked a doctor, and they decided to pump my stomach, in case I had overdosed. I hadn't, and after puking charcoal for longer than I care to remember, my tox screen came back negative, and after I don't even know how long of recovery, they sent me home. I don't remember much of the next three weeks.
I was at my dad's house in the town next to mine, and while sitting on the porch, laughing and talking with my him, I had another convulsive seizure. This time I was taken to a different hospital, and again, did not come out of the seizure normally. I was pretty much comatose. The doctors at this hospital told my mom that I was doing it for attention, and that there was nothing physically wrong with me, just psychologically. They suggested my parents have me admitted to the fourth floor of the hospital, the psych ward. My mom refused, and demanded I get transferred to MUSC, the hospital in the city near where we live. I remember waking up in the children's ward in the hospital, but not much else, except for one blaring, vivid, amazing and beautiful moment: when the neurologist looked at my mom and said "Oh, she has post-ictal psychosis." Relief flooded me, and I fell back asleep.
I awoke the next day, my head a little clearer, being carted into a small room with a bunch of computer screens and machines. The EEG specialist explained the procedure to me, and I don't remember much, but the cold hands, a tool scraping my head, and the burn of 10-20 paste against my scalp stands out. A couple days later, the diagnosis was officially in: Juvenile Myoclonic Epilepsy, Psychosis presenting in the postictal state. I spent a few more days there and had a couple more tests run. I was prescribed keppra, I honestly don't remember my dose.
Now keppra, that's a whole other beast. My little sisters call it the frog throwing medicine. Why? Well, that's a story for another pie. Point being, I was mean, nasty and horrible to be around. Evn though my seizures had stopped, they changed my medicine. I was now on Lamictal, 200mg twice a day.
Even though I was still depressed trying to cope with all of this, and not having anyone around me who understood, things got a little better. I was still having seizures about once a month, following my menstrual cycle, which for me, means aboout one normal week a month. But that normal week was a haven for me compared to the way I was before. At least I was remembering things, a little. I had about three more seizures before they just stopped.
I was almost a year seizure free, when I got the stomach flu. And just like that, two seizures back to back. I don't even remember waking from the first one. Since 2010, I haven't had any convulsive seizures. Absence seizures here and there and holy crap the psychic seizures.
This year I was diagnosed with Crohn's Disease, a horrible beastly condition if we want to be nice about it. Although I never like to consider myself disabled, my life has been undeniably interrupted. This is my story, my life, my dedication, and I want to share it all with you.
First off though, I want to tell you my story.
When I was sixteen years old, I was diagnosed with hypothyroidism. I didn't think too much of it at the time, because as young as I was, the only thing it was affecting was my weight. So I started taking medicine for it, and I slimmed down significantly.
Afew months after that, I started really struggling in school. My doctor diagnosed me with ADHD. I was put on Strattera. On halloween night, twelve days before my seventeenth birthday, I had my first seizure. I was watching a movie upstairs at my grandparent's house, and my grandfather heard a crash. He ran upstairs to find me having a convulsive seizure. He tried to wake me after, (bad idea) and I can remember him saying my name... I could hear him, but I couldn't see him. My eyes were open, but my sight was gone. I was rushed to the hospital via ambulance, where I didn't recover from my seizure normally. I bit a nurse and kicked a doctor, and they decided to pump my stomach, in case I had overdosed. I hadn't, and after puking charcoal for longer than I care to remember, my tox screen came back negative, and after I don't even know how long of recovery, they sent me home. I don't remember much of the next three weeks.
I was at my dad's house in the town next to mine, and while sitting on the porch, laughing and talking with my him, I had another convulsive seizure. This time I was taken to a different hospital, and again, did not come out of the seizure normally. I was pretty much comatose. The doctors at this hospital told my mom that I was doing it for attention, and that there was nothing physically wrong with me, just psychologically. They suggested my parents have me admitted to the fourth floor of the hospital, the psych ward. My mom refused, and demanded I get transferred to MUSC, the hospital in the city near where we live. I remember waking up in the children's ward in the hospital, but not much else, except for one blaring, vivid, amazing and beautiful moment: when the neurologist looked at my mom and said "Oh, she has post-ictal psychosis." Relief flooded me, and I fell back asleep.
I awoke the next day, my head a little clearer, being carted into a small room with a bunch of computer screens and machines. The EEG specialist explained the procedure to me, and I don't remember much, but the cold hands, a tool scraping my head, and the burn of 10-20 paste against my scalp stands out. A couple days later, the diagnosis was officially in: Juvenile Myoclonic Epilepsy, Psychosis presenting in the postictal state. I spent a few more days there and had a couple more tests run. I was prescribed keppra, I honestly don't remember my dose.
Now keppra, that's a whole other beast. My little sisters call it the frog throwing medicine. Why? Well, that's a story for another pie. Point being, I was mean, nasty and horrible to be around. Evn though my seizures had stopped, they changed my medicine. I was now on Lamictal, 200mg twice a day.
Even though I was still depressed trying to cope with all of this, and not having anyone around me who understood, things got a little better. I was still having seizures about once a month, following my menstrual cycle, which for me, means aboout one normal week a month. But that normal week was a haven for me compared to the way I was before. At least I was remembering things, a little. I had about three more seizures before they just stopped.
I was almost a year seizure free, when I got the stomach flu. And just like that, two seizures back to back. I don't even remember waking from the first one. Since 2010, I haven't had any convulsive seizures. Absence seizures here and there and holy crap the psychic seizures.
This year I was diagnosed with Crohn's Disease, a horrible beastly condition if we want to be nice about it. Although I never like to consider myself disabled, my life has been undeniably interrupted. This is my story, my life, my dedication, and I want to share it all with you.
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