In school and my epilepsy

I had my first real epileptic seizure when I was 5 years old. My mother says my eyes were rolling and I was staring off into the distance. She was terrified. What do I remember from then now is nothing but stories I hear.

What I had is called a “petit mal” seizure or an “absence” seizure. It’s called that because there’s a lapse in conscious activity for a couple of seconds. It’s different from a “grand mal” seizure, when people have convulsions. That’s what most people think of when they think of epilepsy. A petit mal seizure may not sound like much, but it’s still dangerous because you can drown or have some other kind of accident in those few seconds. But my epilepsy hasn’t really stopped me from doing things. I’m in high school at a public school. Most kids at my school don’t even know I have epilepsy — you know, I dress normally and act normally. I’m an honor student at my high school; I have a 3.48 grade point average. I’ve been playing soccer for five years, and I bowled on a team for three years. I’m a Girl Scout, and I volunteer for the Red Cross as well as for a drug abuse prevention program. After I graduate from high school, I want to go to college to become either a forensic investigator or a lawyer. There are days I want to hide in a bathroom stall let nobody see my siezures or anything because I want to be the “normal” average teenager. I then look around and remember nobody is normal cuss normal not a robot. Everyone is different and nobody is the same. Siezures are a part of me and I have nothing to hide everyone else has to accept all of me or don’t say you accept me if you can’t handle my siezures cuss that is apart of me. It’s like the saying goes “If you can’t take me at my worst then u can’t have me at my best”.

I don’t think epilepsy has to stop me from doing what I want with my life. I used to be afraid to tell people about my epilepsy, but after having a seizure at school in middle school, I realized that people needed to know, that I needed to share safety tips with them. They need the information just as much as I needed the information.

So if there are other kids out there who have epilepsy, here’s what I want them to know: “Don’t be worried about what others may say about you,” and “You’re not the only one who has epilepsy and epilepsy doesn’t have you”.

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Please continue SHARING your stories and I will continue to support and write and share with others. Thank you so much for sharing. Please if anyone else wants to share there please do 🙂 thank you

You think I am Faking

You think I am faking. Its all in all in my head. So no its not. The doctor just told me I have PNES. He just handed me a ton of papers and gave me in detail what it is. You tell me I am faking and wanting attention as i sit here and shake. I cant stop my hand, I cant stop my eyes rolling back, I can not stop any of my bodies functions. I have gone in and out the hospital for years with no answers except that i just need to stop wasting Er time. I have been shamed by many nurses and doctors, and many other people and the looks I get are horrible. I finally get an answer. What is PNES you ask? PNES is: Psychogenic non-epileptic seizures (PNES) are events resembling an epileptic seizure, but without the characteristic electrical discharges associated with epilepsy. PNES are also known less specifically as non-epileptic attack disorder (NEAD) and functional neurological symptom disorder. You may be wondering what can cause PNES? Pseudoseizures, also called psychogenic nonepileptic seizures (PNES), are seizures that occur as a result of psychological causes, such as severe mental stress. Treating the underlying psychological cause can often help to reduce the number of seizures or prevent them happening.

HOW TO DEAL WITH PNES

-LEARN YOUR TRIGGERS-
When you know your triggers, you can make small changes to avoid them or be prepared for them . If you can RECORD your seizure even if its a video camera set up to motion in your home so if you can catch one on video you can show your doctor.

-Let IT OUT-
Talk about seizures and your feelings about them with those you spend your time with. Talking to a therapist about your feelings and experiences can also be helpful. Because PNES is believed to be related to emotional trauma or stressors, Having a counselor and good friends to talk to and writing in a journal can be great.

-BE SOCIAL-
Don’t allow your seizures to force you into isolation. It’s important to continue living your life in order to make a great recovery. This will take explaining PNES to friends or even acquaintances; however, it’s more likely that you may never recover if you isolate yourself.

-LOOK FOR SOLUTIONS-
Do not downplay your symptoms , it’s important to look for solutions to triggers, rather than trying to avoid them. Always make sure those know how to care if a PNES episode happens. If you know that you are triggered by crowded places, you may find yourself becoming isolated to avoid these triggers. It’s better to gradually work your way up to normal social interaction rather than turning away completely.

-Practice Grounding Techniques-
Learn how to utilize sensory grounding techniques. This practice helps relieve the feelings of panic associated with seizures. How do you ground yourself.

-RELAX-
Psychogenic nonepileptic seizures are more likely to occur if you are tensed or stressed. Check your shoulders and facial muscles for tension, and try to relax them. Also try listening to relaxation audio recordings, or finding a relaxing practice such as yoga or meditation. Take a relaxing bath at end of the day or even in middle of the day.

-Deep Breathing-
Abdominal breathing deep in your belly is calming. Just before a seizure, many people with PNES have difficult or shallow breathing. Master abdominal breathing to help shorten seizures and reduce other symptoms like dizziness. Do this by sitting with a hand just below your naval; breathe in through your nose, feeling your hand move outward as your stomach expands. Count to three, then breathe out and relax your stomach.

-THINK CALM-
If there is a place or a memory where you feel calm and happy, teach yourself to think of this place or memory. Bring yourelf to your happy place and breath.

-AVOID UNNECESSARY STRESS-
Avoid the unnecessary stress of constant ER visits. Unless nonepileptic seizures are accompanied by other symptoms, they aren’t considered medically dangerous. Over-medicating, or causing more stress with constant ER visits, can make seizures worse. If you think your being over medicated talk to your doctor I have found it best to have 2-3 seizure doctors.

-LEARN TO SAY NO-
Clear your schedule. You may need to delegate old tasks that you used to handle for everyone, or say no to requests for extra help or time. Pare your schedule down to the essentials so that you can take some time for self-care on a regular basis.

-TAKE TIME FOR YOURSELF PLAN A FUN DAY (or weekend or week)-
Clear your schedule for a day or two or week and plan a vacation once and awhile (best every 6 months when you can save and take the time off and everyone’s aware) family or good friend to go with. Make sure you have all the medications you need and extra just in case. Make sure you have your med list and take little extra just in case. Remember its a few nights to get away from day to day life and relax doesn’t have to be extremely expensive just relax.

Lifetime

We look at the pictures and cling to the memories. The giggling green eyed with red hair boy wrapped in a bundle of joy. The day he came home what a day that joyous day did bring. The family all gathered streamers and presents and food. So many diapers and changes of clothes now all unused and gathering dust as we can barely walk into a room that use to bring us such joy not brings us to our knees. The long 9 month wait, and we ran all the test told everything was to be just fine, how we to know, how were we to prepare? Tragity hit just all sudden his eyes roll up and he shakes but it doesn’t last more than a few seconds. A few seconds later he sounded like he was crying but the sound and pitch was all over the place as well as him shaking. I tried to sooth him and so did my husband and then we realized he was tense and this wasn’t right we called 911. The longest call and ride I have ever had.

What could ether of us do but wait for the doctors to do what doctors did best. Treat our son. We waited in the waiting room full of hope and not of any patience. Finally we were told we could go see our bundle of joy. What shocked us as we ran back to see him wasn’t seeing him but the wires attached and how suddenly he slept till all sudden another struck. How helpless we were and to us the doctors just it was a few needs and looking at a computer. So upset we were, how could u just barely do anything, do more your payed so much so help our boy. We demanded they did more, so enraged they seemed to do so little, to what we saw. Little did we realize not much can be done to such a small body, a frail young newborn. The doctors where doing all they could, they had ran all the blood work and pushing what meds they could and watching all the brain waves they could but not much more they can. I watched in horror as the last one hit and the last smile my son smiled before his last breath. I held my wife close and we both sat crying wondering if there could have been anything we could have done, to save out 2 week old son. Doctors and nurses helped us thru the process and we now have a better understanding. SUDEP is harsh its real and it can hit anytime and anyone. Going forward now we have had to ask for help and get good counseling because loosing isn’t easy. Its been 6 years and we are now expect our 2nd child its been a long hard road but we are fully aware there is a world beyond our front door. There is medical reasons and answers. There is more than what meets the eye, and seizures can hit about 1-26 people in their lifetime even children who have barely been around long.

HOW TO TELL IF YOUR INFANT IS HAVING SEIZURES!!!!!
The baby may have jerking or stiffening of a leg or an arm that can alternate from side to side.
Or the whole upper body may suddenly jerk forward. Or both legs may jerk up toward the belly with the knees bent.
The baby’s facial expression, breathing, and heart rate may change.
Impairment of responsiveness (which is critical in defining many types of seizures) is difficult to assess in newborns. Parents may suspect that responsiveness is impaired when their voices are unable to attract the newborn’s attention.

Roller Coaster to Freedom

On a sunny relaxing Sunday afternoon, I noticed my kindergarten making strange noises – I couldn’t tell if she was grunting or laughing. We had no idea what was happening to her. For just a moment, I thought she was playing a trick on me! Before I knew it, we were in an ambulance headed to our local children’s hospital. So many nurses, so many codes called, my husband me and her twin sister rushed out of the room into the waiting room as they had to bring my daughter back to life. I fought to stay and was forced to sit in the waiting room and let the doctors work as I was helpless to do anything but hold my other daughter and my husband. What felt like days was only few minutes the doctor comes out and tells us she is doing good and, luckily in stable condition. Our fight has just begun.

Let me hold my baby girl. Let me set her free. Endless nights and silent prayers so many questions and so many questionable looks. My husband and I book cling to each other in fear but smile and grin to hold each other strong as we tell our daughter to be strong cuss she can make it. She is bright she is amazing she is the shining star. Her sister identical twin kept asking us “why her and not me?” such a hard answer to give. These emotions are such a roller coaster for all four of us. we cant imagine the pain she feels and she cant imagine what we feel. I cant stop my baby girl from silently staring into space, I cant stop any of the seizures she has. My husband and I take turns as its hospital and doctor trips is our life. Be free of this thing that clings to my daughters life like a leach. Yes, a month has gone by we celebrate so exited a glimpse of hope after years gone by and then all sudden another day and, another round when will this just stop? When will a CURE be found? When will we get answers of whats wrong with our child. So many doctors we have seen now, tired of others advice. Walking into Texas Children’s Hospital I felt like there was hope that day more than most. In February 2011, my daughter was diagnosed with epilepsy. An answer finally was given and a breath we all were able to take. Unbeknownst to us, our sweet girl was suffering from constant partial complex seizures. We soon noticed her case was proving to be a bit more complex than anticipated, so we started researching the top epilepsy hospitals in the nation after a year of local care. We were willing to travel anywhere and we found out we were just were we needed to be.

**Partial Complex Seizures & Regions of the Brain**

We tried numerous cocktails of anti-seizure medications. I can easily recall relishing in the brief moments of joy when the medications seemed to be finally working, only to be disappointed by the return of those nasty, inevitable seizures. By this time, my daughter had moved into our bedroom so we could monitor her activity through the night, every night, recording the time and length of each seizure. As a mother, watching your child seize makes you feel completely helpless. I would witness up to 20 seizures on the most unfortunate nights. She would cry herself to sleep or cry in her sleep. Shed be talking and fall into another seizure and not much I can do but make sure she doesn’t hurt herself. I cant take away the seizures but I can hold her close and make sure she knows shes loved.

After realizing medication wasn’t the answer, I distinctly remember the first time epileptologist discussed surgery. I must admit, I cried throughout the entire conversation, because the mere thought of brain surgery as an alternative scared me to death. How could I possibly make this decision for my child? How could removing a part of my precious child’s brain not leave her with a lifetime of disabilities? What if something goes terribly wrong? How am I going to explain everything to her sister? How am I going to keep my husband calm let alone myself?

SURGERY

Nearly 130 electrodes were placed directly on her frontal lobe to identify the exact point of seizure origination. Once this procedure was completed, my daughter fortunately seized quickly. They were able to confirm her seizure activity was indeed coming from her right frontal lobe. We handed her off to the doctor again two days later so his team could meticulously remove her right frontal lobe, including her secondary motor strip. Then, we waited. My husband and I found a nice, quiet place to settle down for this long day of surgery. We prayed. We reminisced on stories of our girl’s silliness. We remained optimistically hopeful that she would return to her love of cartwheels, tumbling, singing and playing with friends. The epileptologist and his team did a great job of updating us on her surgery progress. We couldn’t have been happier to put our eyes on our girl in recovery. She opened those big, blue eyes and said, “Mommy and daddy.” Tears from all of our faces as my daughters, my husband and I embraced.

Fast forward to today – my princess is now 16 years old, a teenager! On June 19, 2019, our even spunkier daughter joyously celebrated five years of freedom from seizures. She has also been off seizure medication for over three years! Not only is she back to cartwheels and tumbling she’s on her high school’s competitive cheerleading team, hanging out with her friends like a normal teenager and tackling ninth grade. While the road to full recovery wasn’t exactly seamless, gone are the anxious nights of careful monitoring. We are extremely grateful to have our family together and a great care team. She may be seizure free for almost 5 years but we still check in with the doctor to make sure that everything still is medically going well, as we can not control our body and nobody can predict the body and future.

MORE INFORMATION ON TYPES OF SEIZURES

Most epilepsy is treated with medication. Drugs do not cure epilepsy, but they can often control seizures very well. About 80% of people with epilepsy today have their seizures controlled by medication at least some of the time. … There are more drugs available today to control seizures than ever before! That doesn’t mean they Cure epilepsy. Please help us find a cure. Even if that means to hear our story’s that is supporting. There is also a way to donate to help those who need treatments, medications, and life saving surgery’s like the one in the story above that was so kindly shared. https://donate.epilepsy.com/donate

Please if you have a story contact me. If you like this comment and like this post and take a look at the rest of my post thank you. Real life story’s, shared with me to be shared with everyone we support each other.

Competitive Runner

Katie is a 20-year-old competitive runner from Dublin. Due to an aggressive form of epilepsy, she experiences up to 14 seizures a day. Despite her condition, Katie hasn’t let anything stand in the way of her love for running. With the help of her neurologist, who doubles as her running partner, Katie is never steered off course. With each seizure, she is able to bounce back and keep on going. She has been diagnosed since she was 9 years old, with 2 types. She has gone from a wheelchair to running shoes. Every day can be interesting but every day she picks up her running shoes and lives the day to the fullest. Most the rime she trains alone but for her big races she runs with her neurologist who is also her running partner. She doesn’t let anything get in her way of living life. A great plan put together a support group made of doctors loved ones and a team. A great diet and a exercise plan. Goals set and achieved.

With over 40 different kinds of epilepsy out there its not uncommon for people to be diagnosed with more than one type. For those who have no idea what it is however it is very common for people to assume to call 911 or jump to the worst conclusion of what epilepsy is. The simple word “epilepsy” when googled or just read looks scary. When seen having an Convulsive attack looks SCARY which IT IS but most do not know what to do or how long to wait or anything about it except what it looks like.

Click the Link below Please and watch to know what to do if you witness a seizure and have have the Knowledge of what to do Thank You.

https://youtu.be/XyDHG02phs0

Please continue Sending me your story’s to share with others. Even if you do not think your story is worth sharing you’d be surprised you can inspire. Love to hear from anyone including the friends, doctors, loved ones, anyone from any point of view. Please leave a comment send me a email by pushing the contact button to send me an email. Lets share with the world how Strong we are all together. WE do not know how strong we are until is the only choice we have Epilepsy Awareness.

The Journey Begins

Thanks for joining me! Please keep an open mind and share your story’s just send me a message and I can keep your name anonymous, change your name, or share your name. We are here to share our story’s of strength and let everyone be more aware of what is strength. Even when we feel we are at our weakest we have many others who are here to support us. This blog is a way to support others all over the world, and share what is just one of the many disabilities that isnt seen at first glance on an every day basis. Also there will be information that not everyone knows and can learn from. As well as other information. So please feel free to send a message, share your story. This is for those with and those who are family and friends supporting their loved ones. We are all living together supporting one another.

Good company in a journey makes the way seem shorter. — Izaak Walton

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