Blog is Moving

  

After a lot of starts and stops with blogging, I will keep updating only THREE blogs:

• Epilepsy Awareness, my son's struggle with seizures ...and why I am called 'That Purple Mom" (and includes my storefront):   ThatPurpleMom.com 
• Prepping / Survival Cooking / Living, and getting through these difficult times: www.survival-cooking.blogspot.com 
• My journey to get healthy: www.veegettinghealthy.blogspot.com

Thanks for stopping by. 

Vikki

......

My 28 year old (but mentally and emotionally is about 12) son, Weslee, has intractable epilepsy, autism, OCD, ADHD and lots of side effects from lots of brain surgeries. After a week stay at the Cleveland Clinic in 2024, his team of doctors is suggesting more brain surgeries. We need help to get there and back plus with copays, etc.  Please donate through the link below then share this link: https://gofund.me/085ca903 ..

...OR...

To donate directly through PayPal :

Click here to go to:

www.paypal.me/VIKKIWESLEELAWRENCE

Thank you.

Happy Life Day

Today is our anniversary.

 

One year ago today, on May 1 2019, my son Weslee entered the hospital for an exploratory brain surgery called SEEG. He had a very rare side effect to a seizure med that caused massive brain bleeding during the surgery, so he had a stroke. He was put in a ventilator, and before he left for a Neuro rehab hospital at the end of May, he had had 8 more surgeries. He came home, finally, after a total of 35 days, still relearning to hold a cup, talk, walk, think, etc. 

It has been a struggle this past year. He still uses a cane to walk, tires easily, has to take a nap almost daily. He has huge gaps in his memory, has developed a facial 'tic', and still has the brain drain (shunt).

I am so thankful every day for Mr. Shane, the nurse on the ICU floor who first noticed Weslee wasn't responding to stimuli as expected.  He noticed it in the nic of time; his surgeon said Weslee would have died that night if Shane hasn't caught it, and if the surgeon hadn't immediately taken him back to the OR for emergency surgery.

So...today, Weslee and I will celebrate his LIFE day.



* * * * * *


I sent a dozen specialty cupcakes to the ICU ward (but Mr. Shane no longer works there..bummer). And even though Weslee is taking a nap right now (2:30 p.m.), I ordered a 4:00 p.m."linner" for us from his fave place: Cheesecake factory.

Something in Common

My sweet boy is very firm about what he likes... from food to movies to music to clothing. I don't like that he prefers the horror genre of movies, but since he often balances that with Disney or Pixar, I can't say much...this epilepsy has changed him.

BUT I came across this song the other day and last night, practically begged him to watch the vid/listen to the music.

I asked him to close his eyes to listen, and what did he see..or feel.

Warrior. Preparing for battle.

I have the same opinion.

My 23 year old is an epilepsy warrior. We battle against seizures daily.

This is his new favorite song.

What do YOU see and feel when you listen to Avi Kaplan's "Change on the Rise"?

Link to video:
https://m.youtube.com/watch?v=382BTxLNrow

Keeping Busy During Coronavirus 2020

We took the kids for a bike ride today. It was nice to get out of the house and enjoy some fresh air. The kids and I have been home over three weeks now, and they are starting to show signs of boredom. It's hard to answer their questions about this virus outbreak. A five-year-old and a seven-year-old don't understand why they can't leave the house, go to school, or have playdates with friends. 

Ollie's behavior has been excellent up until recently. I can tell she's starting to become frustrated. Usually, the kids and I are very social and active. We visit with friends and have play dates all of the time. She's even admitted she misses school because she's so bored.  

I can't say this to them, but boy, do I wish I could experience their boredom. Keeping them occupied and from losing their cool is a full-time gig, on top of my full-time gig as a writer! We are just now finally getting some decent weather. Hopefully, the warmer weather can help cure some of our stress and loneliness. There is always more to do outside. 

Homeschooling During the Coronavirus Outbreak:

Homeschool life. 

I am becoming overwhelmed with homeschooling my two kids, and I have a teaching degree. I can only imagine how stressful this is for other families. Both of our kids now have online lessons that they must complete every day on a computer. Doing schoolwork at home is something they are not used to, so it's been a challenging routine to establish.  

Our superintendent indicated that he doesn't seem to think we will be returning to school this school year. As a kid, I would have loved an extra-long summer break. As a parent...not so much.

I think we are taking a few weeks off from writing for the blog for a few weeks while everyone gets their bearings and tries to stay healthy. I hope you all stay safe out there and stay home if you can! We will talk again soon. 

-Abby, guest blogger

Frustration

Weslee is getting antsy. 22 days in isolation with just me, and he made up an excuse to go next door to talk to the neighbor.

I had to give him a stern talking to: 

"Weslee, you not only have epilepsy, you nearly died last year, are susceptible to  illnesses, and still have the shunt (brain drain).  You canNOT take a chance, especially without gloves, mask and goggles or YOU WILL DIE."

He said he knows that but just wanted to talk about their cat.  

Sigh. I can't keep him locked up. After all, he IS an adult, although his mind is still a child.

Family Quarantined During COVID-19 Outbreak

My kids and I haven't left the house in 16 days. We plan to say home as long as it takes. Through this global pandemic, I feel fortunate that my kids are getting along. I see many parents posting daily updates about struggling being stuck home with their children. 

It's not easy. 

I have two early elementary-aged kids, and I work from home as a writer. Having my kids home with me for the last two weeks has dramatically reduced my productivity. My husband works in the power industry and is an essential employee, so we see him off to work every day. 

We are spending far too much time on screens, but we are also doing a lot of beautiful things as a family. My 5-year-old son helped me cook an entire meal, even sauteeing the chicken by himself, while I supervised. 

My daughter, who is in first grade, started reading Diary of a Wimpy Kid, by herself. We've painted, held Lego challenges, played far too many board games, and snuggled up to many family movies. 

I can't help but imagine how my children will reflect on this time when they are older. 

Quarantine and Rural Living

We live in northwest Ilinois, and our weather is still not the best, which is limiting our time outside. Last night, we spent an hour in our basement in the middle of the night while a tornado ripped through town a mile east of us. Nothing spices up a global pandemic quarantine like a natural disaster. 

My mother lives 15 minutes away from us, but we've had to stay apart from Grandma. She is vulnerable to more severe cases of COVID-19, and my husband has several employees who have possibly been exposed to the virus. 

We are doing our best to be positive during this uncertain time. All of our stores are out of toilet paper and cleaning supplies, but most other grocery supplies have started to stabilize. We are managing better than could be expected despite a prolonged shelter-in-place order in our state. 

School and COVID-19

Our kids have been out of school for two weeks. The first week home, the school supplied paper packets for home learning. This past week was their scheduled spring break. Our school district announced a switch to e-learning this week. As an educator whose not currently teaching, I am curious about what this will look like for a 1st grader and kindergartener. We've been reading, practicing our sight words, and trying to keep our bodies moving. 

COVID-19 and Doctors Appointments

Ollie's pediatric neurologist is in Chicago. The CDC thinks Chicago will be the next hotbed for COVID-19 after seeing what's happening to New York City. We have a scheduled neuro appointment coming up, and we've started talking about precautions to take or postponing the appointment altogether. 

We are not sure if we can postpone this appointment for her. We have discussed being prepared should Ollie need to see her neurologist for her epilepsy in the heart of downtown Chicago's medical district. The two best options we have are traveling to Chicago and using precautionary measures to try and reduce our exposure as much as possible or try and coordinate her testing locally. 

I hope that I can coordinate with our local primary care physician, and our neurologist, who is in Chicago. I want to have her EEG and bloodwork done locally and hold a virtual appointment with our neurologist, perhaps with our primary care physician involved. We don't have a pediatric neurologist locally, which is why we have to travel almost two hours to Chicago. 

This global pandemic is certainly raising many logistical concerns for routine medical care, especially for our vulnerable and rural populations. 

How are you staying busy? 

-Abby, Guest Blogger

Family Activity

Here is a suggestion for families practicing 'social distancing', as we all should. Keep a close eye on those in your family with seizures: drink lots of water, take frequent breaks, wear sun protection, and watch out for seizure triggers.

PLANT A VICTORY GARDEN!

During this global pandemic, food is still being farmed and manufactured, but while we sit, stuck in our homes, many people are eating junk to comfort themselves. After the expected months of this, our bodies will be in even worse shape...from battling the CV-19, other health concerns, too much TV watching or other sedentary activities, etc. 

We are going to need the activity of gardening, and the healthy food it will produce.

Figure out how much space you have (even a few pots on a windowsill can yield constant salad greens and some strawberries.)

So plan your garden, order seeds, potting soil and pots...whatever you need. Get started on those seeds now so you can benefit from the 'fruits of your labor'.

======

I will soon be writing a book about this, and using methods like Square Foot Gardening.

What if My Child with Epilepsy gets COVID-19

In the broad scheme of things, we know VERY little about this Novel Coronavirus. Rumors are circulating regarding the virus's ability to evolve quickly, leaving parents and caretakers of people with epilepsy very nervous. The truth is the CDC and the W.H.O. know very little about this virus, and there hasn't been enough time for scientists and the medical community to research this outbreak. 

What we know is based on what is happening in other world communities, and so far, the virus seems to be less severe in our younger populations. COVID-19 being less severe for children is welcome news for parents of school-aged children, especially those of us with illness triggers for their epilepsy. 

What if my child catches COVID-19:

The CDC and W.H.O. tells us that epilepsy alone does not increase your chances of getting a more severe case of COVID-19. Other mitigating factors, such as immuno-suppressing medications, other underlying health conditions, or other neurological factors, can impact your health should you become ill with COVID-19. 

For many people with epilepsy, fevers are a trigger for more frequent seizures. For my daughter, fevers and illnesses are one of her primary triggers for seizures. Febrile seizures are the primary reason she went undiagnosed for so many years. 

High fevers are one of the symptoms of this new coronavirus that is spreading rapidly across the globe. So, while epilepsy alone doesn't increase your risk of severe disease, getting sick with COVID-19 can increase your chances of more frequent seizures. 

Taking as many precautions as possible to avoid spreading COVID-19 and getting sick with COVID-19 will help you to prevent an increase in the frequency of seizures. 

As this pandemic was starting to take hold in the United States, we filled our daughter's prescription for seizure medication. We also made sure we had Ibuprofen and Tylenol on hand should she get sick. My husband still has to work, but the kids and have stayed home for the last week, and we will continue to stay home. 

We live in Illinois, and we are currently under a shelter-in-place order from our governor. I've had friends ask for play-dates, and people want to visit, but knowing I have a child with an underlying medical condition, I've had to say no to these requests. 

What We're Doing to Stay Busy: 

I work from home as a writer. Writing has become increasingly difficult with my kids home with me full time. While I am thankful I still have the means to earn money while home with my children, I did not account for the decrease in productivity. My husband is home on the weekends, so I find myself using the weekend time to get my writing projects done while my husband preoccupies the kids. During the week, I am responsible for meeting my deadlines, schooling with the children, and spending time with my children. 

We've been: 

• Baking (I am almost out of flour and stores are low on supplies)
• Crafting (This morning we made bird feeders with birdseed and honey)
• Snuggling and watching movies (I don't want to admit how many times we watched Frozen II this week)
• Schooling
• Playing outside and cleaning up the yard (We still have cold temperatures, so our outside time is somewhat limited) 
• Reading books
• Video Chatting with friends
• Coloring (So much coloring) 

This week, I think we will focus on tidying up our bedrooms, and my daughter is itching to get out the paints and do some painting. We are looking at the possibility of schools being closed for the remainder of the school year. My Amazon cart is ready with planting supplies to start some seeds indoors. 

If you have any ideas, share with me what you're doing to keep your kids busy and engaged during this crazy time! 

-Abby, Guest Blogger

CoVid-19 and Epilepsy

According to the CDC, people with neurological conditions, including seizure disorders and epilepsy, may be at higher risk for developing more severe symptoms from the novel coronavirus that has become a global pandemic in the last several weeks. 

The CDC recommends that people practice several precautions to mitigate the spread of CoVid-19 and keep ourselves safe:

• Frequent hand washing
• Covering nose and mouth when coughing or sneezing
• Social distancing or voluntary self-quarantine. 

We don't know if this virus is going to get worse or not, but immunologists think that it could unless we take these sorts of precautions. 

Memes and Facebook banter are going around about the hoarding behavior Americans are displaying in overstocking on needed supplies and stealing supplies from hospitals etc. 

Schools all over the United States are closing down to help prevent the spread of the virus. Parents are finding themselves short on daycare or out of work, and people are scared. We are all going to have to endure being uncomfortable as we wait and see what this virus is going to do. 

If your school hasn't closed yet, you may be next. For many of us, homeschool or e-learning is a reality. The community and business leaders are coming together to come up with innovative solutions to help offset the negative consequences of school closures, such as free meals and internet access. 

Several companies are offering free internet services to students and low-income families: 

• Verizon is offering new customers its Internet Essentials bundle free for two months due to the coronavirus outbreak. 
• Spectrum Broadband is offering free internet for 60 days to new customers with K-12 students or college students. 
• AT&T and Verizon are waiving fees for their customers during the outbreak. 
• AT&T is also waiving data overage fees. 

School districts and families are scrambling to gather resources for e-learning and homeschooling, as many districts have indicated they don't know when classes will resume. 

Many Educational Companies are offering free services during this CoVid-19 outbreak: 

• Storylineonline.net is offering free literacy programs where actors read to children. 
• Fluency and Fitness is offering parents free access to their library of educational fitness videos. 
• Neuropsychology and Education for Children and Adolescents shared a daily schedule that is great to help families get through the next few weeks. 
• This google doc is floating around detailing more educational companies offering free programs for parents and schools during the coronavirus outbreak. 

It's going to be tough, and we would rather overreact than underreact. Some of our epileptic friends and family may be a higher risk for more severe cases of CoVid-19. Let's play our part to keep them safe and stay home if we can. 

-Abby, Guest Blogger

Do substitute teachers need medical info about students?

Do substitute teachers need medical information for the individual students?

This question recently became a reality for me as I handled a medical emergency in class while subbing in a 5th-grade math classroom.

Last week, a student had a seizure in my classroom. I was not aware of her seizure disorder and that seizures had been occurring more frequently in school. I would have loved to be more prepared for the possibility of her having a seizure in class.

Am I entitled to that information as a substitute teacher?

As a parent of a student with a seizure disorder, I would be upset if the adults in charge of my kid were not made aware of her potential to have a seizure in class. Her medical information ought to be provided to subs if the potential for it to affect their classroom exists.

I was subbing in a 5th-grade math classroom. During independent practice work time, I was assisting a group of students, and all of a sudden, several students came and got me. A student in my class was having a prolonged absence seizure. Thankfully for that student and me, I have experience with that type of seizure because of my daughter.  I am proud of how her peers knew about her condition, reacted to the situation correctly, and got her help when she needed it. My concern, though, is what if she were with a sub who did not have experience with absence seizures. What if the sub felt she was being defiant or having a fit?

This student was unresponsive, but her eyes were open, and her arms crossed as if she were protesting something. After making her safe and sending students for another classroom teacher to help, we were able to call the nurses and principals down and get her the medical attention that she needed.

Despite my experience with seizures, I was overwhelmed by the experience, and it took me about 30 minutes to calm myself down. Not only was this my first classroom emergency, but I was not aware that this child had a seizure disorder.

I later found out that this student has been having seizures in school more frequently and had two in school the week prior. While I understand privacy requirements, as a substitute teacher in her classroom, this information would have been beneficial for me to keep an eye on this student while she was in my class.

This situation made me wonder about the guidelines for providing substitutes with pertinent medical information about students.

I have been in schools where this information is available in the sub binder regarding individual students with medical and behavioral needs. Teachers don't consistently provide this information to subs. Information regarding a student's seizure disorder was not provided to me as a sub when it was needed. To me, this is a problem.

As parents, how do we make sure our kids' pertinent information is provided to the adults in charge when they need it? 

-Abby, Guest Blogger

Teachers Are Not Aware That She Has Epilepsy

In addition to freelance writing, I work part-time as a substitute teacher in my kids' school. I have a background in education, but I chose not to teach full-time, in part because of my child with epilepsy. I need to be available to her in an emergency. Substitute teaching allows me to stay involved in education and have a flexible schedule for my kids. My son is in kindergarten, and my daughter is in first grade.

Teachers don't always like it when parents substitute teach, and I can understand that. Any person with any bachelor's degree can obtain a subbing license, and parents don't always make the best subs. My background in education puts me at an advantage. I know how to teach.  I've developed a reputation for being a qualified sub in the building, and I think they like me.

Telling People She Has Epilepsy

I was recently subbing in kindergarten for my son's class. One other kindergarten teacher and I were discussing our kids while at recess duty. My daughter went through kindergarten last year, and this teacher was shocked to find out that my daughter has epilepsy.  I was surprised by this for a couple of reasons.

First, the kindergarten teachers work very closely together. The teachers create lesson plans together and get to know the entire kindergarten team, not just their own classes. Last year, my daughter's teacher knew that she has epilepsy, but it turned out the rest of the kindergarten team wasn't aware. I found myself concerned that if my child had a seizure in the presence of one of these other teachers, that they would not be able to handle seizure protocol.

Absence Seizures Don't Look Like Seizures

My other concern involves my daughter's behavior in school. Absence seizures are often misdiagnosed as ADHD. Frequent staring spells can look like absent-mindedness or not paying attention. Should another teacher see my daughter staring off in the hallways, would she be disciplined rather than helped?

Should I Change my Approach With School Staff?

My interactions with this teacher made me reconsider my entire approach when it comes to my daughter's epilepsy and school. The nurse reassures me every year that the necessary adults with be made aware of her medical needs and seizure protocol. Perhaps that doesn't include the entire team of teachers in her grade.

It would comfort me to know that all of the teachers in her grade were aware of her medical needs. They need to know for field trips, recess duty, and even for times when the classes switch around to other classrooms.

I need to develop a plan to provide information to all of the teachers she interacts with daily, and even those she doesn't.

If all goes as planned, next year we will be trying to wean her off of her seizure medication to see if her seizures return. It will be especially crucial for teachers to be able to let us know if they see anything that resembles an absence seizure.

So, it looks like I will be working on a plan to provide information and materials to the second-grade team. Luckily for me, my friend Vikki has written a book with tons of resources for parents when dealing with schools and epilepsy. 

What kinds of conversations have you had with school staff regarding your child's epilepsy? 

-Abby, Guest Blogger

Epilepsy and Activity Restrictions

After overcoming the initial shock of an epilepsy diagnosis, one of the next things to come to terms with is all of the physical activity restrictions you have to impose upon your child. Kids with epilepsy are subject to activity restrictions that can impact their childhood.

A seizure action plan (SAP) is a packet of papers you receive from your child's doctor. In the SAP, it details the type of epilepsy your child has, the medication(s) they are taking, common seizure triggers for your child, and other information about caring for your child with epilepsy. One of those pages on the SAP will have activity restrictions for your child. Your child's teachers and other caregivers need to be aware of these activity limitations.

The activity restrictions can be heartbreaking for a parent.

Absence seizures are brief, quiet, seemingly innocent periods of...well, absence. Many people call them staring spells. When my daughter has an absence seizure, she will stop talking mid-sentence and stare off for a few seconds. A staring spell doesn't seem so bad, but my daughter has no recollection of what happens during those brief moments.

An absence seizure on top of a 6-foot horse could be catastrophic if a child were to fall off or tangle their legs in the reins. An absence seizure while swimming could cause my child to inhale water and wake up in panic underwater, not knowing what is going on.

An absence seizure mid-air on a trampoline could cause my child to fall incorrectly and sprain an ankle, or worse. A staring spell while balancing on a tall balance beam or dangling from the monkey bars could cause my child to fall and hurt herself.

These are the types of activities you don't think of until your doctor starts spelling out all of the things your child CAN'T do.

As a parent, we want to make the world accessible to our children. We want to make every possibility a reality for our kids. Facing a long list of the things your child can't do makes that difficult for a parent. My job is to keep my child safe and teach her how to take care of herself.  I have to break her heart when she asks to play contact sports or requests a trampoline for Christmas. I have to explain to her why she has to sit out when her gym teacher decides to teach a gymnastic unit in school.

Last week I talked about teaching my child that her epilepsy makes her unique. Keeping her confident is not always easy in the face of all of the things her friends and peers can do, that she cannot.

My daughter can't climb mountains or skydive from planes, but she will find her place in this world, and she will be amazing. 

-Abby, Guest Blogger

Seizures and Memory Loss or Slurred Speech

After Weslee had the worst of his tonic clonic seizures, it would often take him hours (postictal - after seizure) before he could speak normally.

A seizure is basically a hiccup in the electrical impulses in the brain. Depending on where in the brain this happens, it could effect areas such as sight, taste, touch, hearing and speech.


Memory Loss and Processing Words

Any type of epileptic seizure could potentially affect your memory, either during or after a seizure. If you have lots of seizures, memory problems might happen more often.

Some people have generalised seizures that affect all of the brain. Others have focal seizures (sometimes called partial seizures) that affect only part of the brain. Some people have both generalised and focal seizures.

If you have focal seizures, the way your seizures can affect your memory will depend on where in the brain your seizures happen.

The brain has two halves called hemispheres. Each half has four parts called lobes: the occipital, parietal, temporal and frontal lobes.

Abnormalities in the temporal or frontal lobes of the brain are the most common reason for memory problems in people with epilepsy. It is referred to as "postictal (after-seizure) confusion" and the length of time to get over it varies from one person to another.

= = = =

The left temporal lobe is important for verbal memories such as learning names and remembering facts for exams. If you have seizures that start in this area you may have problems remembering words, and get stuck mid-sentence.

The right temporal lobe is important for visual memories like remembering a person’s face or finding your way around a place.

The frontal lobe is important for prospective memory. Seizures in this area can cause problems remembering to do things in the future.


What Else Effects Memory

Some seizure, or anti-epileptic, medications can cause more problems with memory or speech.  Drowsiness and concentration problems can effect how to learn and store information. This actually could become permanent, even with medication changes.

OTHER THINGS INCLUDE:

• anxiety
• being distracted
• concentration
• illness
• lack of sleep
• mood (happy could help your mind focus better)
• stress

The more you avoid these problems, the better chance you have to learn the information, and then recall it.

Source Link: https://www.epilepsysociety.org.uk/how-epilepsy-can-affect-memory#.Xjx9sNF8DIU

SURGERY:
Sometimes, you just can't avoid things that effect memory and recall, like surgery for seizures. Before Weslee's first two brain surgeries for seizures (2013), the doctors performed a WADA test on him. That plots the brain. They needed to determine, in addition to other things, where he had speech located.

Most people have speech on just one side of the brain; he had it on both. After the surgery, he did have to relearn how to talk, but he picked it up quickly, probably because he was still young. He was able to make new neuro-pathways, reducing the slurred speech effect.

His word-recall took a lot longer to get better. I have to remember to not supply the word he mentally searched for, but give him time to recall it, or find a substitute.

However, after his botched brain surgery in 2019 with all of the brain bleeding, he didn't bounce back as quickly. To begin with, he was now missing a great part of his front temporal lobe. The bleeding and swelling now also caused his brain to be basically swiss cheese.  Even after speech therapy, he still struggles with word recall and slurred speech, especially when he's tired.


For more information about the WADA test, see: https://www.dartmouth-hitchcock.org/epilepsy/wada_test.html


Slurred Speech

Sometimes after a seizure, an epileptic might slur their words. It can often sound like the person is drunk, which can cause problems with law enforcement and other people with authority.

From Epilepsy,com:

Many forms of generalized epilepsy have nonspecific effects on a range of functions, including those involving language. But other forms of epilepsy produce definite patterns of language disturbance. Aphasia is an acquired disorder of language or symbolic processing. There are many specific types of aphasia, defined according to the type of function that is lost. A person with a diagnosis of aphasia is assumed to have achieved normal language functioning before the onset of illness.

Source Link: https://www.epilepsy.com/article/2014/3/types-language-problems-epilepsy



NOTE:

Basically, slurred speech depends on the type(s) of seizures, where in the brain they occur, damage to the brain, recovery, medication, and if there is a lesion or tumor.

I haven't been able to find much information about how to avoid or remedy slurred speech due to seizures, except to get some rest, and talk with your doctor about possibly changing meds.

For those people who have slurred speech because of surgery, work with your speech therapist. That's what they are there for.

- - - -

Reminder: I am not a medical professional. Please contact your epilepsy doctor (epileptologist) for more information.

Please feel free to comment about your experience with this topic.  Thank you.

Seizures and Headaches

When Weslee has a tonic clonic seizure, or even just a tonic or absence seizure, he often has a headache afterwards. It isn't from falling down, although that is a definite factor if he hits his head during the drop.

Sometimes I don't realize he has had a seizure until he tells me he has a headache. I give him two pain pills (aspirin, acetaminophen, ibuprofen or naproxen) and then he usually takes a nap.

Why do headaches happen before or after a seizure?

From the Epilepsy Foundation:

Everyone has some kind of headache at one time or another. But if you have epilepsy, your chances of suffering with headaches are greater than average. Headaches may occur before seizures and are common after tonic-clonic seizures. In rare cases, the brain wave changes seen on the EEG show that a headache can actually be the only symptom of a seizure. If you have a seizure disorder, you are twice as likely to have migraine headaches. And adding worries about having a seizure to the everyday stress of life may even increase your chances of having an uncomfortable tension headache.

The most common headache associated with epilepsy is called a postictal headache, meaning that the headache occurs after seizure activity. It is estimated that 45% of people with epilepsy have postictal headache. It most frequently occurs after tonic-clonic seizures but can also follow simple and complex partial seizures. The pain of a postictal headache is widespread. It can be steady or throbbing and its intensity can range from mild to severe. These headaches usually last between about 6 and 24 hours, or sometimes even longer. They may be quite disabling, causing you to lose additional time out of your normal activities.

Less commonly, a headache may be a sign that a seizure is approaching. These headaches are called pre-ictal because they occur before the seizure activity starts. They are one type of aura, the symptoms that warn of a coming seizure. These headaches are generally brief. They can be throbbing, steady, or sharp. Pre-ictal headaches are said to affect about 20% of people who have seizures that are difficult to control, but they may be under-reported because the seizure may interfere with memory of the headache.

Another fairly common type of headache is the migraine headache. If you have migraines, they can make you quite miserable. They involve pulsating pain on one or both sides of the head, usually accompanied by other symptoms such as nausea, vomiting, or sensitivity to noise or light. About 30% of migraine attacks are preceded by an aura, which may consist of seeing zigzag flashing lights, distorted visual images, or blind spots, or feeling numbness in parts of your body. People who have migraine headaches may have only one a year or may have one every day for several weeks at a time. Migraines share some common features with epilepsy. Like seizures, they can be triggered by stress, fatigue, menstruation, and alcohol. The aura before a migraine is similar to an aura before a seizure. Even the brain activity detected by an EEG may be similarly abnormal during a migraine attack and a seizure. There is some debate among doctors about whether a migraine headache can lead straight into a seizure and be considered a pre-ictal headache.

A rare type of headache in people with epilepsy is the ictal headache. These headaches are actually seizure symptoms. Some pound like a migraine but others are sharp and steady. In some people the pain builds gradually but in others it begins suddenly. Ictal headaches are seen in all types of epilepsy, including generalized epilepsy. There is a type of epilepsy syndrome in children (called benign epilepsy of childhood with occipital paroxysms) in which 25% of the children have headache as their only symptom. Often a mistaken diagnosis of migraine is corrected only when the neurologist determines that an abnormal EEG shows epilepsy.

Is there anything you can do if you have a problem with headaches? Is there anything beyond an occasional aspirin to help you cut them short or avoid them altogether? For many people, even if you have epilepsy, the answer is yes!

Ictal headaches, the rare kind that are actually seizure symptoms, will disappear if seizure medicine can control the epilepsy brain waves. The other types of headaches generally must be treated separately from your seizure disorder. 

Basically there are two medical approaches to treat your headaches. The first approach is to wait until a headache begins and then stop it. Over-the-counter pills like aspirin, Tylenol (acetaminophen) or Advil (ibuprofen) may do the job, or you may need a prescription for something like Anaprox (naproxen) or Fiorinal (a combination of butalbital, aspirin, and caffeine). For migraine headaches, which involve the blood vessels in the brain, prescription medications called triptans are especially effective. Brand names for various types include Imitrex, Zomig, Amerge, and Maxalt. The triptans are available in several forms. Which one your doctor prescribes will depend on your needs and preferences.

The second approach is to prevent headaches from occurring at all. Your doctor may call this "prophylactic" (pro-fuh-LACK-tic) treatment or "prophylaxis" (pro-fuh-LACK-sis). In this kind of treatment, you take medication every day to prevent future headaches. The seizure medicine Depakote (valproate) is approved for use in preventing headaches and might be the first choice when both headaches and seizures need treatment. Other medications often used to prevent headaches include beta-blockers such as Inderal (propranolol), calcium channel blockers such as verapamil, and Elavil (amitriptyline).

The thing to remember is that if you are having headaches in addition to your seizures, don't be afraid to seek treatment for both conditions. Treating your headaches probably will not interfere with the control of your seizures and you will be free to enjoy life more fully!

Link: https://www.epilepsy.com/article/2014/3/seizures-and-headaches-they-dont-have-go-together

Other thoughts:

• My son can't take daily headache meds as a prevention measure because there is a history of liver problems in our family. 
• Keep in mind that your brain is wonky. Seizures are electrical charges that misfire in your brain. It is bound to cause other problems ... not just with headaches, but also seeing, hearing, perception and other things.
• Sometimes it is hard to tell the difference between a plain ole headache, a before or after seizure headache, and a migraine.
• The before or after seizure headaches tend to be felt in the parts of the brain where the seizures occur.
• Headaches can go away within hours, and some can linger for weeks.
• Vomiting can accompany the headaches.
• Sometimes the headache can actually trigger a seizure.
• Migraine headaches, depression and anxiety can accompany seizures. There are ways to cope with them. See your doctor.
• Don't overdo the over-the-counter medications as they all come with side effects.

Reminder: I am NOT a medical professional. Please discuss your headaches with your neurologist, or better yet, your epileptologist (epilepsy doctor).

Comments are appreciated.

Coping With An Epilepsy Diagnosis

Although we suspected it for a while, receiving the official epilepsy diagnoses for our 6-year-old daughter was a shock. The moment the doctor confirms the diagnosis, your mind begins a marathon going through every possible scenario, outcome, and question you could have. In those first few moments, it's challenging to consider the first and next steps when you're already thinking about the worst-case scenario for your child. This is especially true if you're an anxious worrier as I am.

My husband has a strong family history of epilepsy. His mother, his sister on one side, and his aunt, on the other side, all have forms of epilepsy. So when our daughter spent four years suffering from complex febrile seizures, we suspected epilepsy was involved. It took four years for a pediatric neurologist to take steps to perform an EEG finally, despite none of her seizures occurring outside of a fever. For four years, we held on to hope that perhaps they were just febrile seizures, knowing she had all three of the significant risk factors for epilepsy.

As prepared as we were, finding out definitively that she had epilepsy removed any of that hope. With the official diagnosis came medications, side effects, seizure action plans, and rules about what she could and could not do. It was overwhelming. As parents, we had to cope all while helping our daughter to understand and to cope with something going on in her brain.

Getting a Therapist Involved

We took our daughter to see a therapist. We needed help teaching her to cope with the possibility of having epilepsy for the rest of her life. We still don't know with certainty if she will be able to outgrow her childhood absence epilepsy. While it's possible, there is no certainty.

The therapist sat our child down in front of a whiteboard and drew pictures of the brain. She explained neurochemicals to a 6-year-old in a way that we would not have been able to. She brought out a plastic model of a brain and allowed our daughter to take it apart and put it back together again. This therapist explained to our daughter that all people have differences, and despite those differences, medical or otherwise, everyone is unique and special. Epilepsy was part of what makes our daughter unique and special. In several therapy sessions, our daughter was empowered by what made her unique, and we had tools to use when asked questions about her "apple-epsy."

If you're struggling like we were with the diagnosis for you or your child, a counselor or therapist is a resource that you can tap in to and give yourself and your child the tools in their toolbox to cope with a frightening and confusing diagnosis.

Sometimes as parents, we don't have all the answers, and we are not able to best explain things to our children when we are scared and confused ourselves. Therapy has been an invaluable tool for our entire family, and it could be for yours too.

-Abby, Guest Blogger

SUDEP Book

I am working on a SUDEP (Sudden Unexpected Death in Epilepsy) book for my "Layperson's Guide to Epilepsy" book series. I feel it might be one of the most important in the series.

Because...

...it seems like I read about another death from epilepsy every day, including the young actor Cameron Boyce (from Disney) last year that hit many people hard, including me and my son.

Did your doctor mention death by seizure was a possibility? How much info did you get? Did you lose a friend or family member? At what age should a child with seizures be told about SUDEP?

Please share your story for my book.

If you belong to a Facebook or other epilepsy support group where you can share this post, please do so. 

Please contact me via Instagram @VikkiLawrence1 or leave a comment here, or email to vikkibooks @ yahoo.com. Subject line: SUDEP story. Pictures of your loved one are welcome.

Maybe together, we can save lives.

Thank you.

Day 4 after SEEG Surgery

Another Thursday picture!

Pic from May 4 2019 at 12:52 p.m. 

He is a tiny bit more alert here. The tubes and bag that have red stuff in them ... that red stuff is from his brain... blood, spinal and brain fluid, etc. If he didn't have these brain drains, he would be dead. 

And, as you can tell, he still has the SEEG wires in his head. They wouldn't take them out until his brain swelling goes down some. Otherwise, could do even more damage.

Scary Night

My 23-year-old autistic son with epilepsy came into my room around midnight (almost four hours ago) and quivered out, "Mom, keep an extra special ear out for me tonight. I think I might have a seizure".

So, here it is, almost 4:00 a.m., and I have checked on him three times. I don't sleep much anyway but still...

Hoping he doesn't have anything but a good night of sleep.

(Pic from the first time he ever saw the ocean...Oct 2018.)

Seizures and Sports

I recently heard from a mom of a epileptic child, asking "what, if any, sports should my child play"?

From personal experience, my dear child never even considered doing any kind of a sport. I was happy to get him to take the dog for a walk, or help me milk the goats, or gather eggs.

Of course, we aren't on our farm any more, but still, he doesn't want to do anything. He still has trouble walking from his stroke last May, so I don't push him.

But let's see if I can mention a few, keeping in mind these are MY opinion:

The Probably-NO List first:

• baseball/softball
• boxing/sparring
• diving
• football
• skiing
• skydiving
• soccer
• swimming
• wrestling

The MAYBE list:

• basketball
• cheer (but probably only basic cheers, not the tumbling kind)
• field hockey
• gymnastics
• hockey
• horseback riding
• ice hockey
• karate
• snowboard
• snowmobile
• volleyball
• wakeboard

Now, the YES list:

• badmintin
• billiards/pool
• bicycling/exercycling
• bowling
• color guard
• curling (ice sport)
• dancing
• figure skating
• Frisbee
• golf
• javelin
• judo
• marching band
• ping pong/table tennis (hey, it worked for Forrest Gump!)
• putt-putt/miniature golf
• rowing
• running/tack and field
• shot put
• tae kwon do
• tai chi
• tennis
• walking
• weight-lifting
• yoga

Your child really should have someone with them during almost ALL SPORTS ... in case something happens.

When in doubt, wear a helmet. Protect that head!!

Please keep in mind that I am NOT a doctor or any other kind of medical professional. Each case is different. Consult your (or your child's) epilepsy doctor.


Did I miss any?  Comment below.

What to Expect During an EEG

As I've noted before, it took four years of seizures for our daughter to be diagnosed with Absence Epilepsy. Her first EEG was when she was two years old after a series of complex febrile seizures that resulted in a one-week hospitalization in a children's hospital. Our daughter has never been put through a 24-hour EEG thankfully, so I cannot speak from experience with that length of an EEG, but she has had several 1-hour EEGs. 

Our daughter has been sensitive and picky since birth. Unless her conditions are ideal, she will not sleep for us. She was never one of those babies who could fall asleep anywhere. She had to be rocked or nursed to sleep. Even at two and three years old, we were rocking her to sleep for naps and bedtime. It was exhausting. An EEG requires that the patient be asleep for part of the test so they can monitor brain activity during sleep. 

What is an EEG

EEG stands for Electroencephalogram. It is a diagnostic test that measures electrical activity in the brain. Since seizures are electrical disturbances in the brain, EEGs diagnose and monitor seizures and epilepsy. 

With an EEG, a neurologist can tell if seizures are occurring, if epilepsy is present, and (hopefully) what type of epilepsy. 

Our EEG Experiences

6-year old waking up from EEG

Our first few EEGs were difficult since Ollie was so young and so sensitive. The techs begin by gluing electrodes to her head. An EEG can have as few as four or as many as 250 electrodes. The tech measures Ollie's head and marks her head with a grease pencil for placement of the wires. Then a special glue is used to secure the electrodes. The electrodes hook to wires leading to the machines running the test. Then her head is wrapped with gauze to keep things in place.

During the EEG, they test several situations that could induce or trigger seizure activity. (They call these "activations".) The most common conditions are flashing or strobing lights, and hyperventilating. For our EEGs, they've always asked us to have Ollie wake up at 4 or 5 a.m. the morning of the test so she is sleep-deprived. Sleep deprivation can also be a trigger for abnormal brain activity. So imagine waking up your 2-year-old in the middle of the night and then asking her to tolerate electrodes glued to her head and then put her through all kinds of uncomfortable conditions. For the last part of the EEG, the patient falls asleep so the tech can run the EEG during sleep to check for brain activity during sleep. 

So we have a sleep-deprived, irritated, already bad sleeper of a two-year-old that we're supposed to get to take a nap with electrodes glued all over her head. Easily done, right?

When Ollie was hospitalized the first time, I had to stand and rock her to sleep in my arms with the wires from the EEG hanging all over the place. Then gently attempt to place her down on the bed once I was sure she was asleep for the remainder of the EEG. For us, the sleep portion is the most important because that is when our daughter tends to have her absence seizures. 

Now at seven years old and having gone through at least three EEGs every year, Ollie is an expert at this test. She knows exactly what they are going to do. During these EEGs are the only times she will willingly nap for me during the day! Her most recent EEG in December 2019, was the first EEG that has not shown any seizure activity since her diagnosis. Normal EEGs means that if her next few continue to come out normal, we will discuss weaning her off of her seizure medications. 

Her next EEG is coming up in May. We travel two and a half hours to Chicago to see her pediatric neurologist. We tend to make these trips to Chicago a fun day for our kids; in December we went to the Chicago Museum of Modern Art. We are thinking about the aquarium with this next trip. 

-Abby, Guest Blogger