Purple Day 2017 – Don’t Fear the Purple

Purple Day was started in 2008 by a nine-year-old in Canada by the name of Cassidy Megan. This is a day that those with Epilepsy and those who support us come together and spread awareness. This day is observed globally each year on March 26th to show support for our fellow warriors. While Epilepsy can be a wild ride and sometimes intimidating, know that you are not alone. Here is a a little reflection of my journey with Epilepsy and with a quick search of #PurpleTogether, you can find other inspirational stories about those who travel a very similar road.

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Th Beginning of a Journey

I was 19-years-old when I was first diagnosed with Epilepsy, which was six years ago this year. I was a performer with InProv Winter guard, switching into a new college, violist for New Bedford Youth Symphony, and heading out with friends every weekend without a care in the world. Then out of left field, all of that changed – worst part is, I cannot even remember what happened.

Last memory of that day prior was going to a cookout with my friends from InProv and taking a quick stop at Target – next thing I remember, I am in a hospital bed with my friends’ staring horrified and my father just arriving. I had no idea what hospital I was in, what time or day it was, why I was there, could not recall names, and slowly I began to panic.

When I was finally proved to be alert and oriented, the doctor came in to explained what happened. My friends then started stating what they witnessed and at that moment everything was a daze. I remember my dad’s face turning pale, my friends’ were still in shock – now what? I was told I had a seizure in my friend’s car, while she was driving. She immediately pulled over and called 9-1-1 and luckily a nurse pulled over to aid me and them through my first seizure. I had blood coming from my nose, convulsing uncontrollably, completely unconscious, and let out a scream before the event took place. My tongue was currently swollen, I could not remember even getting back into the car and at least an hour or two had passed and I do not remember anything since being inside of Target, which was 20-30 minutes before the seizure. My behavior was fine, I acted normal, then suddenly I screamed and everything took place. The doctor stated I experienced a grand mal/Tonic-clonic seizure. Then quickly reassured me that it was probably a fluke…at least so he thought.

I continued life as normal, of course my parents were quite hesitant. Both my brothers had seizures, although only in early childhood. I grew up around having to help my parents care for them and the painful wait for paramedics. I was already well aware of this life, but their seizures were not like mine – and that was concerning; this normality became unfamiliar. Then about a month later, it happened again.

I was in the bathroom, last I remember I had just entered the bathroom. I was told I let out this scream that you could not  ignore. The dogs started going crazy and my parents began trying to unlock the door. I bet you could guess what happened; I was seizing in the shower. My dad worked on the door while my mom called 9-1-1; they had no extent of my injuries or if I was submerged in water. Paramedics arrived and my dad went with them and yet again, my next memory is waking up in the hospital – but it was different. I did not feel like I was all there. I was way more groggy and confused. I remember my dad pleading with the nurse to not leave me alone as she sent me for a urine sample. I asked her if I should leave the door open, to which she stated I did not have to – I would not have another seizure. 19-year-old me who was desperately grasping for independence shut and locked that door because of that RN told me. Well, guess who again let out that scream in a locked bathroom? Guess how many security guards came to knock that door down? Guess who then got placed in a medical induced coma?

(Once I woke up from my slumber)

A bit over 12 hours later, I finally woke up to my friends and parents surrounding me. I guess they have been there a while, they all took a deep breath in to see me open my eyes. I was convinced it was still the previous day, my dad opened the windows and everyone kept telling me it was a new day. My dad told me what happened in the ER after I went to the bathroom.  He was upset and angry, he knew as soon as a code was called, it was for me. I just sat there, staring at my hands and the wires thinking, this is now my life. This was not going away, this was not a fluke – this is now my life.

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The Sun still Shines

For quite some time, it felt like Epilepsy did nothing but slow me down. My memory has worsened over the years, I can not work as much as I would like, I interfered with my children’s sense of security, I almost lost my own life, and I am no longer graduating with my peers. But in the grand scheme, things were not all that bad. For every negative, there is a positive – you just have to look for it.

Met my wonderful Partner – His name is Adam. He looked passed my diagnosis, accepted the fact I was a single mother trucking through school and working a basic job. When the seizures came, he stood by me and took us in as well as his family, just so I could rest even if my stubbornness fought hard against that. He reminds me that I am only human, that I am still like anyone else. For someone with Epilepsy, sometimes that is exactly what we need to hear. We are people too. Even with my waning memory, he is patient with me and even aids me. He is a reminder that I am safe and I am not alone. When my medication side affects decide to take over, and I will never forget this, he held me. He reminded me this is not me and he knows that. He reminded me that no matter what, we will get through this and we will get me. For the first time, someone understood. He understood. I will never let that memory fade.

Friendships Grow – I have made some wonderful friends through Epilepsy – whether it was through support groups or becoming close to those around me already. There is one person I would like to mention specifically, that is my long-time friend, Maria. She may not know it, but she did pull be out of a spiral. After my accident in 2016, I was lost – I worked very hard for 4 years to be told I could no longer continue because of something I cannot control. My daughters’ would cry every time I left the house thinking I would not come back or come back in blood as I did that time. My partner was worried about me when I would not respond – as that is what happened shortly before the seizure. I had a lot of guilt that became depression – I also had anxiety flaring up alongside it. Maria stood by me, she listened, and she pulled me up – probably unknowingly. She got me back into music which was a huge outlet for me growing up, she made more of an effort to check in, she came by now and then, and she brought me back into reality. There is a lot I never say out loud, but she still understood. I could never thank her enough

Passion for Pediatric Nursing Grew – I always liked pediatrics, but I had an amazing experience in Maternity and though perhaps that was my calling- until pediatrics. I will not forget the amount of children there for their first seizure or had been diagnosed with Epilepsy already. These children were afraid, theses families thought of it as a dead end, and in that moment, I imagined my family. I remember being in their shoes, just older. I took time with these patients, one patient I walked with around the halls just talking about Epilepsy and our seizures. They were grateful, they had hope, they saw a light – and I will not forget that. If I could instill that in more people, I could never complain about my job. In that moment, I found my calling.

Family Growth – Although, I hate to admit my girls may of had to grow up quick in some aspects and I see it every day in my oldest. Once they were able to grasp that mommy had “accidents” (what they term seizures), they had never left my side. My oldest does not like the idea of me sleeping alone, she sleeps besides me when my partner is not there. My youngest watches and reminds me to take my medication, she even learned which bottles were which. They grew interested in the medical field, my youngest always dressing up as a doctor during play time. My oldest is always hugging me and reminding me that “it’s okay mommy,” and I have her. Each moment we truly cherish, even at their young ages. While yes, I have a lot of guilt their first memory will be mommy being unconscious and convulsing, I am thankful for the bond that formed.

Meeting Fellow Warriors– It took me a while before I started seeking support from others with Epilepsy that may be around my age. For a long time, I wanted nothing to do with my condition and wanted it to just go away. I went through being made of, losing my independence, losing my license, almost losing my job, and feeling like I was incapable of functioning on my own. That was far from the truth in reality, but at that time, that felt like my reality. I struggled alone for quite some time, then I finally found support within a group and a girl I met online. Along with others we formed our own support group and it has been nothing but a blessing. We are able to be there for others so they do not have to struggle alone and we are there for each other when we go through times of darkness.

Gaining Self-Confidence – I chuckle when I reflect on how Epilepsy gave me confidence after turning me into a hermit. I was at a low that no one quite realized, but as I grew with Epilepsy – I started to gain confidence and resiliency. I became determined to not let it stop my ability as a mother, student, partner, and musician. I became determined to prove that I can still take care of myself and work. I stopped listening to the negativity that surrounded me. I wanted to be more than my illness, I wanted to be me. Of course, I understand all of this is still within limitation, but I can still have a fulfilling life.

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Remember, you are never alone

At the end of the day, at this present time, Epilepsy is here to stay for most of us. Whether it is having seizure or the side affects from medication and repeated trauma, it will be part of us forever. We must learn to embrace it and spread awareness in hope that one day, there will be a cure. Embracing Epilepsy can be hard, but you are never alone. Take a look at the #PurpleDayProject – support came in from the United States, to the United Kingdom, to Austria, and back again. There are support groups for just about every country and region. There are support groups online, in person, and wonderful medical professionals out there who will help you along your journey. You are never alone.

Your journey is what makes you,  you. We will have bad days, and we will have good days – that is human nature. It is okay to not be okay, it is okay to wish for a different path. Just remember, you are here because you are a warrior. You are strong and you are reliant. You did not  choose to give up, even if you were on the brink of making that decision.  Cherish the moments of happiness and embrace the moments of sadness with positivity.

You will prevail.

Promise.

Fear of Permanence

A fear that I did not know existed within me.  I do not like change too much either within my personal life, but permanence terrifies me. This fear for me rises from anxiety with the idea that good and pleasant things will fall through. It also rises from a fear that I will not be able to change something I do not enjoy – but instead, find a way to make it mediocre.

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Epilepsy is permanent. Have you ever imagined waking up one day, knowing you will never get better? Imagine being told that at 19, just a few months into being diagnosed with something completely out of left field. There is no magic pill to erase it, just to tolerate it. There is no guaranteed surgery or interventions. All you have is hope. To hope it gets better, to hope it becomes tolerable, and to hope it will not be your downfall. Coping with the permanence of Epilepsy is exhausting. For some, yes – they do “grow out” of it and able to live a normal life; very common for childhood diagnosis depending on the type. Some live completely seizure free with medication. Some do have success with surgery. Then there are some that may have less seizures, but they still come. And for the unfortunate few, nothing helps.

Even if we are not actively seizing, we still suffer. Epilepsy does not end when the seizure ends. For myself, head trauma is included every single time accompanied by blackouts and lost memories. With each seizure the time to recover is longer and lack of memory worsens. Then let us not forget the pills that lessen these events – they slow down cognition processes and understanding. They too affect memory storage. Then there are the mental health side; both condition and medicine induced. Sometimes we lose ourselves for the sake of tolerable life.

This is permanent for most of us. This is permanent for myself. There is no reversal; my memory will not come back. Memories lost will need to be triggered and constantly triggered to reform them. Without medication my learning processes may improve, but will equally be hindered by seizure frequency. Perhaps the constant seizures would have a worse effect. My family has been permanently affected and opportunities are forever missed. This is our reality.

  • “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these” (source)
  • “The overall risk of dying for a person with epilepsy is 1.6 to 3 times higher than for the general population” (source)
  • “Epilepsy-related causes of death account for 40% of mortality in persons with epilepsy” (source)
  • “Neurologists say sudden unexpected death in epilepsy (SUDEP) is second to stroke as a cause of years of life lost because of a neurological disorder” (source)
  • Tonic-clonic seizures are an important proximate cause of SUDEP” (source)
  • SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).” (source)
  • Perspective wise: 47,055 people died in 2014 from drug overdoses of various types and 35,398 from motor vehicle accidents in the U.S. (source). Epilepsy takes 50,000 lives each year (source).

These are permanent facts we have to live with every single day. These facts have not changed and without support and awareness, will not see a change. All we can do is hope and confine in those close to us in our times of weakness.

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March 26th is Purple Day; a day in which we must raise awareness for Epilepsy. A day in which we must take a moment to realize that such a common phenomenon is underfunded and takes lives without notice. We deserve more than mediocracy.

Wear your purple with pride

 

 

 

Fireworks and Flickering Lights

Fireworks

This blog was originally written for Guy Fawkes Night/Bonfire Night which was celebrated November 5th in the U.K. (see the post here) The more I thought about it and searched around, the more I saw that it can be difficult to gather information on how to prepare for holidays that involve firework displays and flickering lights. Here is what you need to know before going out and celebrating.


Get packing!

                Before heading out to your festivities, make sure you have a few things handy such as:

  • A watch/charged phone with a clock
  • Your medication(s)/extra medication
  • Something to drink/snacks
  • Emergency medication
  • Insurance card and picture ID
  • Medical alert ID – if you do not have one, take an index card and write in big letter “Medical Alert” and on the back place your name, date of birth, medication(s), diagnosis, and emergency contact

It will also be beneficial to have a plan of action developed between you and whomever it is you are attending festivities with. This way, everyone will be on the same page and prepared if a situation occurred. You will also want to discuss how emergency medication should be administered and when to call an ambulance. What else may be beneficial, of course depending on the type of seizures associated with your Epilepsy, is preparing a med-pack/first aid kit. This can include items such as gloves, bandages, notebook and pen, hair tie, and anything else you may need specific to your seizure (find out about my med-pack here: http://thestorminsidemyhead.com/2016/09/epilepsy-med-pack/)


Let the Show Begin!

While firework displays can be absolutely captivating – it may send those with Epilepsy, especially Photosensitive Epilepsy, into a bit of a tizzy. Here are some quick tips to help reduce the chances of triggering a seizure:

  • Take your medication on time – things can get hectic when meeting up with friend and celebrating but be sure to set an alarm just in case so you remember to take your medication. This is your first defense against a seizure.
  • Get sleep before the event – you will want to make sure you get plenty of sleep, especially if you have a long night ahead. Lack of sleep get lower your seizure threshold and the more rest you can get the better.
  • Eat, drink, and be merry – Be sure to stay hydrated and get a proper meal in. This will help increase your seizure threshold and decrease the chance of a seizure occurrence.

←Now for the Finale→

  • Cover one eye – do you start to feel funny the colorful lights glisten? How about during the finale? This can be tough for those with Epilepsy but surprisingly, cover one eye can be beneficial in preventing a seizure. This reduced the amount of visual stimulus coming into the brain; therefore, the brain does not have to work as hard to stay calm.
  • Do not sit up close – that may sound like bummer but the further away you are, the less likely it will trigger a seizure due to the light being less intense as well as the flickering being reduced by the fireworks.
  • Polarized sunglasses – wearing sunglasses at night may sound silly but, this can actually help reduce your odds of a seizure – especially for those with Photosensitive Epilepsy. Now, they are probably going to be more of use during the day, but if you know the flickering of the fireworks or large bonfires will probably leave you feeling uneasy, go pick up a pair. If you are wondering what type of lenses, some research articles suggest blue lenses but again, this depends on the person.
  • Let someone else drive – it has been a long night, you watched a beautiful light show, and now it is time to call it night; well for some. On your way home, if you are able to drive – ask someone else to. This will not keep yourself safe, but others around you too. Seizures can strike at any time and is better to stay on the safe side. Do not be afraid to ask a friend.

Do not forget, at any point that you begin to feel an aura or a twitch – tell someone. Let someone know that you do not feel okay and get yourself to a safe area. If you know it will result in a tonic-clonic/convulsing type of seizure, get low to the ground and away from the waterfront if you are near one. Make sure you are not near any hard objects and that someone is with you and ready. If you are unsure what the resulting seizure may be, take the precaution and get low.


Are You Ready?

                While it may seem like a lot of work, your health and safety are worth it. No one wants to spend a holiday in the hospital while everyone else is out and about. Take care of yourself and follow these tips to ensure a safe time and wonderful time/


Do you have any tips and tricks you would like to share? Remember these tips can be used for multiple holidays that may involve:

  • Flickering lights/flashing lights
  • Fireworks
  • Late nights

Seizures In Public

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“Where am I? How did I get here?” – does this sound familiar? What do you after you had a seizure in public. “Did anyone notice? What do I do now?” Here are some quick tips on dealing with Epilepsy and Seizures in public


Before a Seizure

  • Medical Alert ID: If your seizures come without warning, are frequent in nature, or you become disorientated and confused for a while after a seizure – it would be beneficial to invest in a medical alert band. This way if anything does happen in a public place, you will have some basic information in visible sight. Information usually includes: you name, your condition, medication(s), and an emergency contact. If you have rescue medication – may place that as well.
  • Spare Medication: If you are unsure whether you will be back in time for your next dose or a chance you may stay elsewhere for the night – bring extra medication. This is your first line of defense against a seizure and you should always be prepared. Sometimes we do not know who we will run into or where exactly we are going so having at least one extra dose on us can be beneficial.
  • Rescue Medication: Carry your rescue medication (if prescribed), wherever you go. You never know what may happen or what may send you off. Be sure to have specific directions along with it or on an index card in a med-pack or a bag that you use so others may administer it to you in an event of an emergency.
  • Eat, drink, and sleep: Sometimes we get busy and tend forget about our basic needs. Sometimes we may think “well, I can wait until the next meal.” Before going out, be sure you have ate something, are staying hydrated, and have plenty of rest – especially if you have a long night ahead of you. Of course, if you are going out to dinner or lunch, you do not want to have a full course meal but be sure you have had a little snack at some point beforehand. This will help increase your seizure threshold, meaning it will make it harder for seizure activity to occur, and help keep you going strong. You need to give your body and brain the best possible chance.
  • Bring a med-pack/First aid kit: It does not have to be anything major and tailor it to your specific type of seizures. See here for what is in my med-pack if you need help getting started – reminder: this is tailored towards me and I made it more on the universal side. I have tonic-clonic seizures without auras, therefor I prepare for injury. I do not wet myself or lose control of my bowels, therefor I did not state packing extra clothes. It depends on your specific situation.
  • Auras: If you have auras; do not ignore. If something does not feel right, take the warning. Whether this means going back home or finding a less stimulating area – do so. Do so in a place where you can get low to the ground and away from objects if possible to promote personal safety. If your seizures do not involve convulsing – still do find a less stimulating place to relax and try to keep as calm as possible.
  • Go out in pairs: If you have frequent seizures; there is no harm in making sure you have someone to go out with you. While yes, this can be annoying you, it is a matter of your health and safety. If you just feel “off,” when you usually do not or know that you have not gotten a lot of sleep and that is a trigger – do not be afraid to phone a friend or family member to tag along with you.
  • Call/Text: If you are going out alone, let someone know where you are going. If you feel off, call or text someone so there is a time frame of reference and someone will be aware of where you are in case of an emergency.

After a Seizure

  • Disoriented and Confused: If you have no idea where you are or who is around you; do not panic. Take in some deep breaths, try to relax, and ask someone what happened. If there is no one around – take time to relax and slowly reorient yourself. Try to remember the last thing you were doing or place you have been. Check recent texts, calls, and even receipts to see what you can remember last.
  • Phone a friend: If a seizure had just occurred, it may be beneficial to call a friend to accompany you, pick you up, or simply talk you through your postictal phase. This friend may be able to help reorient you and will be able to help you track your seizure.
  • Check for injuries: If you are alone, check yourself for injuries. If someone is with you, if you feel comfortable have them also check. You want to make sure no harm was done and assess if medical attention is advised.
  • How long was I out for? If you do not know or do not have a frame of reference – call your neurologist if it is during regular office hours. If it is late at night, assess yourself or have someone else assess you. There is no harm in taking a visit to the ER or walk-in if you are unsure but not all seizures may require medical attention immediately. Regardless, phone your physician or specialist as soon as you can so they are aware or if you have a plan to document occurrence, just do as your care plan states.
  • Do not drive: Right after a seizure had occurred, I strongly suggest to not drive yourself home. Ask a family member or friend to come meet you to either pick you up. You may have enough assistance where someone else could drive your car home; if not, talk to the security of the facility you are located at or manager on what to do with your vehicle. I am sure they will be understanding and if anything, call your local police department. They would rather you be safe than attempting to drive home
  • Rest: Take your time, take things slow – do things at your own pace. When you get the chance, be sure to rest. It can be stressful having a seizure out in public, especially by yourself. For myself, when I have a seizure alone, it leaves me uneasy with a lot of unanswered questions and this may happen if no one is with you during the time you come to. Just remind yourself: you are safe, you are alive, and you are doing okay.

Gaining independence from Epilepsy can be hard, but is doable with the right support system. Never give up hope

What if you are the friend/family present during the seizure? What if you were a stranger walking by? Do you know what to do? Check  here

Acceptance.

 ←PeaceLoveAcceptance→

 

Something we all strive for as social creatures. Acceptance from peers, colleagues, and coworkers. We even strive for self-acceptance – for example an acceptance of a new condition or issue within. For some of us, coming to terms with Epilepsy can be a challenge. For some, this challenge is extended to family and friends while we struggle with accepting it ourselves. How does someone ‘accept” something they never asked for.


Education

I could never stress this point enough; education is key. It is the key to acceptance within social standards and within ourselves. Things become harder when you do not know the root and cause or how things will play out. For some of us, myself included, we never get the “cause” or satisfaction of knowing why Epilepsy decided to choose us – it just happened. But for some, they know – they have some understanding. While this does not mean one is harder than the other, educating yourself on either personal factors or possibilities can help ease your stress of the unknown. If you are newly diagnose and do not know much about Epilepsy and other Seizure Disorder, look it up! Educate yourself as much as possible. Never be afraid to ask your specialist a question or to rule out possibilities you come across – that is part of their job and you may think of something they could have overlooked!

Look up stories, check out credible sites, talk people who have been living with Epilepsy, join support groups – do anything you need to in order to educate yourself and get a better understanding. The unknown will slowly become the known and you will be one step closer to acceptance

    Be Honest with Yourself

At first, we may be a little bit in denial about the extent of our condition. We may not want to accept that it will/has changed our lives or the true severity of it. We may feel embarrassed or overwhelmed with everything going on – but we will not get through it if we cannot be honest with ourselves. This can be hard, very hard. It is okay to feel overwhelmed, angry and upset. It is okay to wish this has never happened. But be honest with yourself on how you feel and try to find out why. “Why do I feel this way?” It could stem from a lack of understanding or social rejection. It could stem from watching a close family member or friend go through it. You will never find an answer if you cannot be true to yourself.

It took me years to accept my condition entirely. Does this sound silly? Maybe. But it was not until I saw the impact of sharing my story – even if it was the tiniest bit of information, it still made a big impact for someone else. Only then did I realize I was not being honest with myself. I told myself I accepted it when I truly never did – I was afraid of the stigma. I told myself it was not big deal, when in reality it was. It changed my way of life, my friends, my support, and my interactions. I was in denial that it ever affected me at all; but every hero falters, everyone has a heart, and everyone feels – it will affect you in some way and that is okay.

Grievance

Grieving? We are not dying, but simply have Epilepsy. You are right – but this still can be an emotional and upsetting time when the diagnosis is given. You are right, it could be much worse – but let us have time to adjust to the changes, the constant appointments, the medication, the brain fog, and the stigma. Let us have our moment of sorrow for something we never asked to be placed upon us. We all grieve differently and we all take different losses with Epilepsy – a loss of independence, loss of the ability to drive or to work, loss of a dream we were chasing…it is okay to be upset.

More importantly, allow yourself time to be upset and time to let reality set in. You will not be able to accept something you harbor hate or dislike towards. Talk it out with family, friends, significant other, or even your doctor/specialist. If you need some extra help, go seek it – go to counseling if you have to, it is okay! Epilepsy and mental health go hand in hand more often than not. You will be surprised how many of us have mental health conditions alongside our Epilepsy, reach out to us – we exist.

Perspective

When you first get a diagnosis that may potentially change the usual flow of life – do not dwell on what is lost, but focus on what is gained. Yes, allow yourself time to be sad but then allow yourself to be happy. You may have met new friends, you may have a stronger support system, or you may finally have answers to questions about yourself that you have been afraid to ask. Perspective is everything some times and with any type of new diagnosis, try your best to keep a positive outlook. While yes, Epilepsy may be part of your life, it is NOT your life and it is not YOU. You are you, and you need to be the best you that you can be. Do not let Epilepsy stop you, but empower you. There are positives to this. Remember: You can still live a normal life, you just might need to do things little differently or take things a little slower. But life will go on, and you will too.

If you are struggling with keeping a positive outlook, I challenge you every morning or every night (or both!) to say three positive things about yourself and one about Epilepsy/Seizure Disorders. It can be small thing such as “I am alive, it is sunny, I have a home, and I did not have a seizure.”

Strength & Pride

Once you begin to look at things with a more positive outlook, you will slowly begin to find strength in new places and a new sense of pride. Your journey may test your limits but it will only make you stronger with each passing day. You will gain pride in every accomplishment, no matter how small or large – you were able to still continue on despite your adversities. Take pride in your journey, take pride in your strength and let your strength keep pushing you forward as it continues to help you grow.

Acceptance

Once you understand, once you allow time for your emotions to pass, and once you change your perspective – only then can you begin acceptance. Only then, will you fully accept your diagnosis for what it is and start to wholeheartedly accept yourself. Like I said, it took me years to get here; everyone will have a different time line, but you WILL get here. The more light that gets shed onto the unknown, the easier it is to accept and navigate through. Just take it one step at a time, there is no rush. If you need to stay a while on one step, that is okay – I will stand with you, we will get there. Just breathe, tomorrow is a new day and with every day, you are one step closer. Promise.


What Ultimately Helped You?

For me, it was the moment that I shared my experience with others, face-to-face, and gave them the confidence and positivity that I never received in the beginning of my treatment. I treated them in a way I wish I was treated and gave them a real life example of life continuing on. I was able to give them hope. It was in that moment I realized that I was not honest on how I personally felt, that I tried to ignore it as others have done when I tried to reach out, and that educating myself would only go so far. At that moment I made a promise to myself to be more accepting of my condition and use it help benefit others. Over time, I gained acceptance of myself.

Remember, acceptance does not mean you will not struggle. There is a lot that comes with Epilepsy/Seizure Disorders and yes, struggles will arise – but accepting those struggles is part of the journey. Accepting the good with the bad and always being honest about it is part of overall acceptance. And you will get there.


Feel free to share you journey to acceptance below and what helped you along the way

Parenting with Epilepsy

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What’s it like to be a mother with Epilepsy?

It is hard some days. It is hard work being completely healthy but imagine having a chain-linked fence in the way. You can reach through this fence but you are barely touching your child’s hand as they reach out for yours. Imagine having to console your children every night that mommy will be okay. Imagine your children being afraid to go off to preschool because mommy might have an “accident.” Imagine your children’s morning motivation to get up is to help you take your medication. This is motherhood with Epilepsy.

There is only so much I can do at their ages of 2 and 3 to help them understand. They try their best and try to help me. Some people question why I allow them to help me; it has helped them cope. Even though my accident has now been almost a month ago – I still have marks and every day my 2-year-old asks to see them and kisses them to make me better. They have not picked up on mommy’s jerks and probably see it as normal due to frequency but one day I am sure they will ask.

There is guilt. There is anger. There is joy. Guilt for me comes from having Epilepsy. I had a seizure and thought I dropped my newborn but luckily and probably subconsciously as well as instinctively, I placed her down to sleep. I had another seizure while they were both in the tub and the reality is that they could have drowned. There is guilt I carry from those almost events. There is guilt I carry for every tine my children worry. My anger stems from guilt. I get angry at Epilepsy. I do not want my children’s first memory being that mommy had a seizure. Unfortunately, the reality is that it was traumatic for them and that might indeed be their first memory. But alas there is joy. They are more aware, more forgiving, and kind. They understand sometimes people need help; even adults. In one aspect it brought us closer, if that’s even possible.

They are my heart and soul. They inspire me. They push me forward. I would be lost without them. They make me fight harder every day. They are the sun on my rainy days.


How do you explain to a child about your seizures?

This will depend on the age group and what YOU as a parent feel comfortable disclosing. Let us take a quick glance over the development of children.

  • Infancy (0-1 year) | Coordination sensory experiences with action
  • Toddler (1-3 years) | Egocentrisim, questioning through play,
  • Early Childhood (3-5 years) | Rudimentary conscience, knowing right from wrong, magical thinking
  • Middle Childhood (6-12 years) | Perceive past and future, questions others point of view, question beliefs, trial and error, problem solving
  • Adolescence (13-18 years) | formal operations, strategic interventions, interpretation of earlier experiences

(Note that this goes a lot more in depth and by theorist; again this is a brief and simple overview)

 

For my children; they are about the age of magical thinking – what this tends to mean is the child may blame themselves for why something has occurred. The believe that their words have power. Also they are still routine orientated so when something gets interrupted it is an anxiety provoking experience. For me personally, I saw how much stress this caused my children. I saw their confused and tearful looks – curious if mommy was going to be okay. I decided right there I would be honest, use as many proper terms as they could grasp, and communicate with them in their own words. They call my seizures “accidents;” when I used the word seizure they automatically connected it to accident and that is how I explained it to them. When I talk about my medication, my two-year-old calls them “beans;” so that is how I explain it. It is important to explain things in a way that THEY will understand. It may sound silly but this also alleviates their stress and you know they understand what you are saying to a point.

I also decided I wanted to be transparent. I want them to know; I want them to know what to do. I feel that this would be easier for them as I am a single parent. No one else would usually be there to help them in an event or shield them from the truth so for me it was best to prepare them. Plus, they will be able to get some form of help if needed. Again, this is entirely your choice and your decision.


Did this affect them?

I cannot say for sure to what extent but as of the most recent one, truthfully it has. They worry still every day. Just earlier today my three-year-old told me she would buy be a special present if I did not have any accidents. They check on my old wounds and confirm that they are going away and they make sure to watch me take my medication. They are a lot more concerned when routines get disrupted or things have changed. My oldest refuses to sleep in her room since the accident. My youngest is starting to follow in her footsteps. I reassure them the best I can in a way they can understand but it is not that easy.

Some people may automatically blame their stress on my transparency – but I ask you to think about this situation. You are by yourself with your child/children and you fall to the floor unconscious and convulsing for 5 minutes, possibly bleeding due to an injury. What is more traumatizing? Not knowing what is happening or knowing that there is help and this can be fixed? It is a personal choice and preference and I respect everyone’s opinion, please respect mine.


From my Three-Year-Old

“What’s it like with mommy having Epilepsy/accidents?”

Kaylin: Lots of doctors…and more doctors.

“Are you scared mommy might have an accident?”

Kaylin: Sometimes..no more accidents. You have to be a good girl.

“How do you feel about mommy’s medicine?”

Kaylin: I like your medicine. It keeps you safe


From my Two-Year-Old

“What is it like that mommy has accidents?”

Autumn: Beans and doctors. Doctors give you beans

“Do you get scared?”

Autumn: mmm (did not want to respond)

“How do you feel about mommy’s beans?”

Autumn: Your beans, B6 and Keppra! Can I help tomorrow?”


What can I do to keep them Safe?

  • Dress/change young children on the floor
  • Bathing young children on a mat or towel and give them a sponge bath
  • Get a wrist attachment for a stroller or purchase a jogging stroller (typically comes with one)
  • Feed a baby/young child in the lowest position possible. If breastfeeding, feeding them in bed is a good option
  • Keep your house as hazard free as possible (“baby proof”) if the little ones are mobile. That way if you are alone, less of a chance they will get themselves hurt.
  • Keep medication in a secure place away from little hands
  • Develop a seizure action plan if the child is old enough and if you feel is necessary
  • Have emergency contacts posted somewhere for easy access for older children as well as what to do during a seizure
  • Do not be afraid to ask for help if needed after a seizure. Your health and your child’s health are key priorities.
  • Reduce your own risk of having seizures by taking care of yourself!

Feel free to leave your thoughts, comments, or experiences below

Pregnancy with Epilepsy

Warning

Before I get into this I will place a warning for anyone who has had miscarriage. I will place a warning for anyone who does not feel comfortable about reading about loss. I will do my best to keep that section short. But there is a positive outcome. I promise.


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My Experience.

So, if you have read some of my older blogs you will see that my first neurologist advised me to not get pregnant.  At 19 years old, with dreams of being a mother – sorry, you have Epilepsy in the form of generalized tonic-clonic seizures. Of course, some of you may know that I did not listen too well.

I am very keen on researching. I like to know what exactly I am getting myself into before I do it. I decided to look up pregnancy and Epilepsy and saw some sites recommending to take folic acid. There was and still is a lot of research promoting it. Fun fact: Folic acid can reduce the rate of neural tube defects by more than 70% (https://www.health.ny.gov/publications/1335/). These defects can be associated with antiepileptic drugs (AEDs) so many obstetrician/gynecologist  (ob/gyn) and midwives will suggest folic acid when you are trying to conceive.  The trick is to start the folic acid BEFORE getting pregnant because a lot of development happens in a short amount of time before you typically discover that you are pregnant. Some sources suggest starting folic acid a month before you start trying to conceive. I started folic acid when I started Keppra, so it was a few months prior.

But how much do you take? Again, recommended standard according to the Epilepsy Foundation is 400 mcg (0.4mg – http://www.epilepsy.com/information/women/all-women/folic-acid) to start. The dose will vary depending on your dose and type of AED – always good to visit an ob/gyn prior to conceiving, but if not starting on 400mcg (0.4mg) is a good place to start. This is where I started along with taking a prenatal vitamin, but when I finally saw an ob/gyn and had a new neurologist, they placed me on 1,000 mcg (1 mg) of folic acid. That was a big jump that I was not expecting.

It took a few months before I saw a positive test. I was not really sure if this was due to the AED or just coming off birth control. I was honestly fed up and about to stop; maybe my neurologist was right. Then one morning, I saw the strong pink lines, it was positive and I was over the moon. I could not believe this was finally happening. Then slowly fear sunk it – now what? At the time I was living in North Carolina, I quickly set an appointment up for my first visit with the local ob/gyn. After about two weeks I noticed some abnormal bleeding that soon turned bright red. My heart sunk; due to my studious nature, I already had an idea of what was to come.  I tried to ignore it and hoped it would go away. Every day it got heavier and eventually I ended up in the emergency room. I will never forget sitting in the ER with my head low, embarrassed. I sat quietly  for  hours until my eventual miscarriage occurred and the hospital ‘confirmed’ it. My heart broke. I felt like I was not a proper woman, that maybe I was not healthy enough to bare children after all. I tried everything to make sure I had a healthy pregnancy and still failed. I was filled with disappointment, anger, and just sat and thought “this is because of Epilepsy.” I was mad at myself, now wishing I had listened to my neurologist. Wishing that my Epilepsy would go away. Now I had to set up a new type of appointment with the ob/gyn; one I was dreading.

With fluctuating hormones in pregnancy it can produce or reduce seizures. My appointment was only a few days later and in the office it happened. I had a tonic-clonic seizure in front of everyone. Last thing I remember was standing in front of my partner at the time, next thing I knew I woke up in a hospital. If I was not embarrassed and disappointed enough to be there for a miscarriage, this topped the cake. They told me it was due to the ‘dropping’ of my hormones from the miscarriage. Wonderful, two things I did not want to talk about or deal with, but now I had to.

About a month later I was still spotting. I was confused. I thought maybe my body got really messed up from all the stress and went to a walk in; they confirmed I was pregnant but looked baffled when I told them my history. They immediately sent me to the ER. There was no way. I did not engage in any type of activity as everything that happened sent me into a depressive low. The ER ran blood work and the doctor came in and looked at me apologizing “actually, you have been pregnant this whole time. I am not sure who told you that you miscarried, but you did not miscarry completely.” He told me he thought I miscarried a twin. At this point I was over trying to have a child, I had no idea how to react. My partner’s face turned white and I was in utter shock. He went on to tell me my seizure was due to the rise of hormones and immediately checked to make sure everything was okay by ultrasound. Now what? I asked the doctor is the seizure would affect my child. He could not give me an explanation if the seizure would and started to avoid eye contact. He said there was not enough research to guarantee a healthy baby. Now what?

I moved back to my home state and immediately got an ob/gyn. A hospital in another state oversaw my pregnancy as they were preparing for the worst case scenario due to having Epielpsy. I had to go to weekly neonatal stress tests at an earlier rate than a typical pregnancy, had to see a genetic counselor due to my family history and to go over possible birth defects from Keppra, I was told a cesarean section (c-section) would be a better option as there is a risk I could seize during labor, and I had to go to different cities and out of state for more tests to make sure my baby would be okay. There was a plan made if the baby needed a neonatal unit, there was a plan made if I seized during delivery, there was a plan made if I needed a C-section – plenty of plans, but nothing really made me feel safe or consoled my worries for my child.

The day of birth came. It ended up being a scheduled c-section because my little one was breeched – the doctors were relieved almost by that. I was very adamant on wanting a natural birth. I was also adamant on breastfeeding but was told not to as the effects could be harmful with the medication; there was not much research done. Although, at the end of the day, I can happily say I gave birth to healthy baby girl and that is all that mattered. Although, after the c-section my body was trembling and they thought I might have a seizure so I could not hold her right away after the initial meet.

Fast forward two months, guess who had another seizure? Guess what that meant? I was pregnant; already about a month pregnant by that point. Again the same fears flooded back but there was some reassurance since the first time went alright. Doctors were well prepared after having my first child. There was no way out of a c-section this time with how close they were. Now I did not mention this the first time around as I came back halfway through my pregnancy but they increased my Keppra with both pregnancies. It was some time after the first trimester that the dose went up. They checked my Keppra levels more frequently to make sure I did not get to a toxic level as this could harm the baby and myself. I was still on folic acid from before as I requested to be so there was no change there. This pregnancy flowed a lot better because they were well prepared. Again, a second hospital out of state watched over my pregnancy. Again, I had to travel out of state for testing. I was placed into a research study on the effects of Keppra on pregnancy this time around, still no new information could be given. Everything went fine..until birth.

Now I am not sure exactly what happened but I remember being halfway during the c-section and feeling dizzy. I remember my body temperature dropping and I started shivering. My heart rate and blood pressure was doing something they were not supposed to because the nurses had a look of concern across their face and kept asking me “are you okay? keep your eyes open okay” There were student nurses in the room and they whisked them right out immediately. They hurried their way through the c-section and started pushing things through the IV I did not remember from before. They started getting concerned I might seize and did everything to get my temperature back up and body under control. All I could think was “please don’t seize, not now, keep it together.” Luckily nothing came of it. Again, another healthy baby girl. But I guess my first neurologist had a point, it can be risky to give birth with epilepsy.

Again, a month or two after the birth I had another seizure. This one scared me. I did not remember where I had my newborn last. I had no idea if I fell with her. I had no idea if she was in my room or hers. I had no idea where I even was for a few moments. I rushed in and out of rooms and saw both my children asleep peacefully in their separate beds. They were safe. I sat by my door and just cried. I knew it was not going to be easy, but I did not think it was going to be this tough. No, I was not pregnant this time. It was due to the fall of the hormones.


What to remember if you are planning to conceive

  • Seek an ob/gyn prior to becoming pregnant and trying to conceive as well as informing you neurologist. You want to set up a plan and you want to make sure you have enough folic acid to promote healthy growth of the developing fetus and some studies show this can take about a month prior to build up enough in your system. You will also want to take prenatal vitamins to make sure you are getting enough nutrition not only for yourself, but your little one too.
  • Do not stop your medication if you become pregnant. While the possibility that some sort of defect or issue can occur is scary, what can be more worrisome is not knowing how a seizure effects a fetus. You need to be as healthy as you can be and take care of yourself first and try to limit the amount of seizures/seizure activity you have
  • Pregnancy will affect the amount of medication you receive. As the pregnancy goes on, you will more than likely see an increase like I experienced. This is due to multiple factors involving pregnancy – including weight changes, hormones, and the developing fetus.
  • If your seizure have been well controlled – do not be afraid to ask your specialist if you can decrease your dose before trying to conceive. This might ease your mind and limit stress levels but even if that is not an option for you, you can still go on to have a healthy pregnancy.
  • Breastfeeding is possible – but discuss this prior. Some medications advise against it as the effects to a newborn are not well known or are known to have adverse side effects. There are options such as trying a different medication, lowering the dose, temporarily coming off the medication, donor breast milk, or doing formula if none of the option are applicable.
  • Do not be afraid to ask questions. This is new and can be a scary experience. Feel free to ask all the questions you need.

Facts Behind Epilepsy and Pregnancy

  • 15-30% of women will have an increase in seizure activity in the first and third trimester
  • Seizures that occur during your menstrual cycle will no predict if you have an increase in seizure activity during pregnancy
  • Women who have been seizure free for 9 months prior to pregnancy have a high chance of staying seizure free during pregnancy
  • Partial seizures do not carry as much of a risk as generalized seizures. Tonic-clonic generalized seizures carry more of a risk to mother and baby if a seizure was to occur
  • Most specialist feel that AEDs are a safer option than risking a seizure
  • There is a 4-6% chance that a malformation may occur that cannot be predicted
  • Family history of congenital malformation will raise the risk of a malformation occurring
  • Vitamin K may be give to women with enzyme-inducing AEDs in the last month of pregnancy
  • 90% of women with Epilepsy go on to having healthy babies

For more information visit:


What is your experience with pregnancy and Epilepsy? Leave a comment below!

Keppra Toxicity

Accidental Overdosing.

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                If only we lived in a perfect world without mistakes or errors. If only people took the time to listen or reevaluate their decisions. But this is not the world we live in and none of us are without error. What is important is learning from past mistakes and educating yourself about warning signs and how to prevent them if possible.

                When I first got diagnosed with Epilepsy in 2011 at the age of 19 I had already had about 3-4 tonic-clonic seizures within a month. Some I told people about, some I suffered in silence wishing they would go away. There might of even been more but you see, this is when my overdose happened. Part of my life is nothing but bits and pieces. Part of my life I struggle to recall and perhaps also one of the most important parts because this is how it all began. As years went on, more seizures occurred, and side effects from medication began taking their toll, it became even hard to recall the event that occurred that year.  Excuse me if numbers and figures are not exact relating to dosages.


My Story

I had started a new job that I loved, got into a new relationship, connected with old friends, looking into starting college – things were going good; aside from being recently diagnosed with Epilepsy. For me, that was the elephant in the room. I should have been happy with myself and with life, but truthfully I was not. I was started on Keppra after my first seizure or two at a low dose of 500mg twice a day – this is usually the standard starting dose. I listened to the lecture of how I should not drink, reconsider pregnancy, and be careful in my everyday life. I should not drive, I should take breaks when needed, and I should go easy on myself. Most importantly I should NEVER miss a dose. And I never did…perhaps that was the problem.

I obeyed my neurologist word for word. Avoided grapefruit and cough syrup. Took my medication on time, but that did not always stop the seizures. Every two weeks I went back and he increased my dose. Higher and higher it went. I do not remember what my last dose was from that time period but I remember it being a pill and a half in the morning and a pill and a half at night. At this point something did not feel right. My seizures were sort of under control, but something else was going on.

My job became a chore that I dreaded. I could no longer remember how to make drinks or where things were in the café – mind you I have been here for a little while now. My coworkers did not want to work with me because I took “too long” and they felt like I was a responsibility. They started calling me the “seizure girl” and notice I had a little tremor. Eventually my name became nonexistent, I became “seizure girl.” I would forget constantly when I had to go in or what time my shift started. My manger became curious what was going on and I would simply reply “I do not know, but don’t worry, I’m fine.”

Being awake became a task. I was always so tired and wanted to nap. It was hard to learn new things – probably due to the memory lapses and generally feeling “slow” – and I began giving up on going to college. How was I going to manage school when I could not manage my life? Remembering the previous day started to become a task. Have you ever saw 50 First Dates? That was basically my life. My boyfriend would have to leave me notes or else I would not remember he had left for work. He would leave me notes of what we did or talked about the night before. He would leave me notes about my work schedule. Slowly I began not to remember conversations or places I have been and it began to scare me.

What was going on? Was I dying? Did I have a brain tumor? I became frustrated and lashing out at people. I did not want to leave the house or go out in public. Coworkers began to tease me more as it got worse and I would try my best to hold it in. Simply being alive felt like a chore. I was fed up with having to do daily task such as shower or eat. I had no will to function. I had no will to try and socialize. Eventually everyone started to notice. I became a zombie. My memory was nonexistent. I could not recall names at times or words I wanted to say. I barely remembered to take my pills. One day I decided to look up the side effects in detail:

“Max recommended dose: 3000mg/day. Side effects: SUICIDAL THOUGHTS, aggression, agitation, anxiety, apathy, depersonalization, depression, dizziness, hostility, irritability, personality disorder, weakness, drowsiness, dyskinesia, fatigue, coordination difficulties, STEVEN-JOHNSON SYNDROME, TOXIC EPIDERMAL NECROLYSIS” (Davis’s Drug Guide – side note: I capitalized life-threatening side effects)

Alright. So the lack of desire for daily functions and constant sleep made sense, but what about my memory? What about this tremor? What about not being able to find the words I want to use? I am 19 year old, I should not be like this. I was an honor student. I was in advance placement classes. What was wrong with me? I started getting anxious and paranoid at work. I did not want to be there. I no longer cared about work or being in a relationship. I did not care about going back to school. I honestly did not care what happened to me. Then one day I woke up – suddenly I cared. Frantically, I called my neurologist and demanded a blood test – they asked me if I had any recent seizures and they said “your dose is fine then, it is the side effects.” Paranoid still, I moved onto the next in line, my primary care physician and he gladly agreed to do a blood test to check my levels.

For the next few days I anxiously awaited that phone call. Was this me or the medication? Am I just crazy? Is all of this a dream? I was constantly checking, just waiting for the call…then finally it came. The conversation went something like this:

                “Is this __________”

                “Yes..”

                “We have some news for you, you blood draws came back”

                “…yeah..”

                “Cut your dose in half immediately, your Keppra levels are too high. Something is not right and we will notify your neurologist right away. Please do not continue your prescribed dose and make an appointment as soon as possible. If things worsen, come in right away, this is atypical.”

                “..huh….”

                For a minute my world was spinning…what just happened? I was not understanding. What do you mean my levels were too high, my neurologist knows best…so I thought. “It is basically an overdose – it has not made its way to your respiratory functioning yet but if you keep take your prescribed dose it could progress.” All I remember is replying with “oh.” I did not know how to feel. So what do I do? Cut my dose and endure seizures repeatedly? Do I deal with this until I can speak to my specialist and hope I do not end up in the hospital? Now what.

At that point it was too late to cut my dose I already took my pm pill and then next day I still took my usual dose…what did that nurse know? She was not a specialist. So what if something happened, I am sure the hospital could fix it…right? Or maybe this medication was doing everyone a favor. Maybe I should keep this dose. I felt like I was a burden to everyone around me. Maybe this was my fate. Something changed the next day and I immediately called my neurologist, but things were different.. this I do recall:

                “Can I speak to Dr._____”

                “Sure what is your name? Hold on.”  (few minutes had pass) “Hello? Actually…on second thought he does not want to take the call at the moment but you can speak to me. He knows this is about your levels.”

                “..Okay…so what do I do?

                “What do you mean?”

                “What do I do? Should I lower my dose?”

                “I cannot tell you what to do, I am not your prescriber.”

                “Can I talk to my prescriber”

                “He does not want to take your call today.”

                After this game of back and forth and her telling me she cannot help I hung up. So NOW what? I closed my eyes and swallowed my next prescribed dose and called the office again. Same nurse answered I presume. She had the same story. I tried to book an appointment but he was “too busy.” I then purposely left voicemails for appointments and callbacks – nothing. They wiped their hands clean of me. So really, now what? What was I supposed to do? I sat down and thought about it…is this really my fate? Should I listen to my primary care physician? What do I do? I sat down and planned out how to wean myself. Against medical advice, I weaned myself off of Keppra. I also had to look for a new neurologist. And luckily, it did not end worse.


About Keppra Toxicity

Now I can only speak from personal experience and I can tell you what websites say.  Symptoms according to websites include: extreme drowsiness, agitation, aggression, unconsciousness, difficulty breathing, shallow breathing, and coma. I did not have an extreme case nor did it last long enough to get worse. Symptoms from other people include: mobility changes, stuttering, changes in speech, changes in memory, and increasing difficulty with processing information. I was never told how high exactly my blood levels were but it was enough to affect me. I was a small girl at the time, 5’1 and barely 100lbs. Dosages are different for everyone as well as how the medication may affect them. My side effects that told me something was off: severe memory problems and trouble communicating. I cannot definitely say the tremor or issues with learning was completely related to the high Keppra dose. My mood definitely got worse but I cannot say for sure again if that was toxicity or because everything happening at once. I also developed a little bit of a rash as well as the dose increased. It is hard with antiepileptic drugs (AEDs) because a lot of what are usually toxicity signs for other medications are what AEDs usually cause. If you EVER feel like something does not feel right or something is off, do NOT hesitate to phone your neurologist or primary care physician. If they do not listen to your request, do not hesitate to ask for a second opinion or go elsewhere. Always advocate for yourself if something does not feel appropriate.


Do you have any experience with Keppra Toxicity? Leave your story below!

Epilepsy Med-Pack

       Always be prepared

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I was greatly inspired by my good friend Tori on making an Epilepsy Toolkit. After my recent accident and knowing that if it was not for a firefighter being involved; there is no promise I would have been as well off as I was. Then I started thinking some more – what if I am able to drive again and get into an accident while having a seizure? What if I saw someone else having a seizure (this has happened before)? I decided to take the next step.

This is my Med-pack; essentially a first aid kit tailored to your liking. I found these nifty little bags at a local Rite Aid and they had coupons inside for things that one might buy. Here is the run down on my version of the Epilepsy Toolkit.


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  • Note book and pen – that might be silly as someone having a seizure may or may not be able to communicate. But timing a seizure is very important! When an emergency situation occurs, it may be hard to remember dates and times while tending to someone so take a second and write it down! This is very beneficial for the person you are helping, their medical provider, and for you! Remember: After 5 minutes call an ambulance – or if there is no medical alert ID can be found.
  • Alcohol wipes and gloves (latex free preferably) – For me personally, I have tonic-clonic seizures that come without warning. So yes, I will fall and usually there is blood. If someone else was bleeding I would also wanted gloves and something to clean their wound with. If you are making your own first-aid kit or med-pack be sure to use latex free gloves. You never know who will be helping YOU in an emergency and you do not want two emergencies going on at once
  • Bandages of all sizes – Some people with epilepsy will hurt themselves and bandages can become quite useful!
  • Butterfly closures – okay, so some of you might be like “what in the world is that” (see picture below). It helps hold skin in pace for small wounds that might need more than a bandage. If you think someone might need stitches, slap a butterfly closure on them until help arrives

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  • Gauze pads of various sizes – This is mostly because of my car accident and seeing the mass amounts of blood everywhere. If someone is bleeding a lot, these will be more beneficial to you. If you needed to set yourself up a little field to lay things out, hey gauze pads work for that too. Also, if someone is puking and you want to give them a little bib, gauze pads can help
  • Paper tape – I say paper tape over cloth tape because it is easier on the skin and less chance of a reaction to occur. If you need to tape gauzes to someone or something is not sticking well, use the paper tape
  • Tissues – Some of us may foam at the mouth, drool, or vomit so it is helpful to have these laying around.
  • Scissors – not every day kitchen shears but something you would see in the medical field. If someone is seizing and the clothing around them is too tight – use scissors!
  • Antibiotic Ointment – for those wound that bandages would fix up. The more you can help clean out wounds the better to decrease the risk of infection.
  • Hair tie – if someone seriously injured their face or part of their head you would want to get hair out of there or if the person is vomiting.
  • Survival Wrap – okay, this coming in handy probably sounds very slim as a wrap but it is meant to help prevent heat loss. Well, if you are waiting for an ambulance in the winter this actually could be very helpful. But it is also super reflective and could be used to warn oncoming traffic or grab attention. This can also be used as shade and prevent over exposure to the sun. I just had this in my house and hey, you never know

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     I got lucky and my medical ID came with its own little pouch. It has the medical alert symbol on it and in there I placed an index card with my full name, date of birth, emergency contact(s), diagnosis, type(s) of seizures, list of medications, name of my neurologist, types of insurance I have, when to call an ambulance, where my med-pack is located and a brief run through of epilepsy first aid. I always have my insurance cards on me as well as a picture ID so I do not worry about placing them in there. I also listed my children’s names on the card in case they were ever with me. I carry this pouch everywhere with me and I will bring the med-pack if I am traveling.

This might seem a little over the top (did I mention I am a nurse in training?) but after my experiences with Epilepsy I would rather be over than under prepared. Also, this can be used for just about any situation and it is always just a good idea to have something similar with you in your car or on your travels. I hope this was able to help some of you out and maybe have some of you start your own med-pack.


Did I forget anything?

Feel free to leave a comment below on what you think should be included. Also, check out Victoria’s Epilepsy Toolkit here and see what she has: https://chroniclesofkeppra.wordpress.com/2016/09/11/the-epilepsy-toolkit/

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Dealing with the Diagnosis

“You have Epilepsy.”

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This can be pretty devastating to some people. Most people do not understand the weight of the words unless they have been directly impacted. For me personally, I will never forget that day. The same epilepsy I watched my brothers go through for years, just in a different form.  My first neurologist told me I should rethink having children in case Keppra did not work and because of the type of seizures I have. He told me since I could not figure out my triggers and neither could they that I would have to be careful in everyday life. This also added to his rant about having children because the stress of labor could cause me to have a seizure and there is a potential of me losing my life. He also told me my chances of getting pregnant would be harder – but this was back when not much was available on Keppra.

I was devastated when I got this diagnosis. I knew things would change. My friendships changed, the relationship I was in at the time changed, how coworkers treated me changed…everything changed. Some for better and some for worse. I denied the diagnosis for a while thinking it was a mistake. When the seizures did not stop and the dose kept increasing I learned to accept it. This was my new reality. I hoped every night I would grow out of it, but that was not the case. The neurologist said I would be on medication for the rest of my life and so did the second.

I cannot tell you how to cope, we all cope with things differently. But I can tell you this, it gets better. The hardest time is always the initial moment of the diagnosis and trying to find the right mix of medication to slow the seizure activity. I went through a medicated coma and a Keppra overdose before my tonic-clonic seizures were under control. I was having myoclonic jerks every day since high school and only now am I just finally having that be taken seriously as they are probably seizures – thank you to my third and hopefully final neurologist. But things it did get better.  I might have to do things a little slower or take more time out to accomplish a task, but I can do them – and so can you.


Do not be afraid to reach out and ask for help. This was something that took me years to learn but better late than never. You will meet people who are fighting the same battle or who are farther along on their journey and these people can truly help you out. Do not be afraid to ask family and friends to help you because most of them will. I will not tell you it did not feel degrading at times or like you are losing your independence, but you will gain it right back. You just need some tender love and care and some time to focus on you. And that is okay.

Never compare your journey. Some people may have seizures more frequently than others and some may not. Some seizures come in different forms but they are still all part of epilepsy. Everyone has their own battles and each battle makes you stronger. Do not forget that epilepsy is more than just seizures. Epilepsy is the side effects from medication, constant doctor appointments, EEGs, missed arrangements, everyday stigma and so on. We are all in this together. Never feel like because you do not have it “as bad”, that you do not truly experience epilepsy. You do, just in your own way, in your own form, and you are brave for that.

It is okay to not feel okay. We go through emotions. We deal with setbacks. Sometimes our medication goes up and it feels like we are moving backwards. We have a seizure for the first time in years and it feels like you are back at square one. It is okay to feel that way. There are people here for you that will help you get through that. Your medication went up? That means you are a step closer to having your seizures more controlled. You went a year without a seizure, then had one? That means something is working and maybe you can identify a new trigger from it. Try to look at your positives, but take the time to feel upset. This is part of your journey and no matter what you will keep moving forward.

Advocate. Whether it is for yourself towards a doctor or treatment plan, starting a blog/vlog, going to events; do not be afraid to speak up and never be afraid to advocate yourself. Remember: you are your own best advocate. Everybody has a story, an experience, and every one deserves to be heard. This may help someone who is new or someone who is in the same situation as you. This could mean the difference of getting proper or improper care. This could mean helping in research and education This can be scary and this can take time to get into, but this is something to think about. Nobody will ever know epilepsy and seizure disorders better than you. Be heard; you deserve to.


Always remember:

 You are not your illness; you are not epilepsy. You are you. Epilepsy is just a small part of who you are and what makes you, you.


Are you looking for a support group? Go to https://www.facebook.com/groups/324889234525834/

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