A Very Special Announcement

It has been some length of time since I last stopped by, I am sure this may lead to some of you wondering why. Well, between being a student and working, I have been blessed once more with a beautiful gift; I am expecting baby number three! As you may know, I have previously blogged about Epilepsy and Pregnancy (click here to take a peek); now I will be able to post my experience as I go along and answer questions in real time. I hope this helps some of you who are thinking about pregnancy, are currently pregnant, or are curious about pregnancy and Epilepsy.

 

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Wait, how long have you known? Why the wait?!

Truthfully, I found out back in November. I had the inkling that I was pregnant due to an increase in nocturnal seizures (which is typical for me and typical for some others to have an increase in seizure activity due to hormones). We were indeed actively trying due to other health circumstances that have been bestowed upon me. These health circumstance will impact my ability to carry children and sadly this will have to be my last pregnancy for the sake of my health. This time around, I was actively seeing an ob/gyn due to the circumstances and began taking folic acid at 4mg and prenatal vitamins before conceiving, as well as continuing with my B6, fish oil, and Keppra. During this time my Keppra dose also seen an increase due to being diagnosed with myoclonic seizures – which did aid in decreasing the frequency of these seizures. In due time, I had one large nocturnal seizure, noticed a huge decline in myoclonic jerks, and soon enough seen a positive pregnancy test. My partner and I could not be any more thrilled as we welcome a new child into our life.

Currently, I am 18 weeks and 1 day and due date is still set for August 1st, 2017. I wish I could say it has been smooth sailing, but we had some bumps early on. While my health issues reproductive wise do pose a threat, I was also diagnosed with a fairly large subchronic hemorrhage (abbreviated as SCH), also known as a subchronic hematoma. A SCH is an accumulation of blood between the fetal membrane, next to the placenta or between the uterus and the placenta itself. It can cause light to heavy spotting, but some women have no bleeding at all.  SCHs typically tend to affect 25% of all women in the first half of pregnancy and will typically resolve on their own. Unfortunately there is no direct cause or way to prevent this from occurring; it is one of those events that “happen” and is due to the egg slightly separating or tearing from the uterus. Sometimes you will also hear it referred to as a threatened miscarriage – as yes, there is a possibility for a miscarriage to occur.

(Photo pulled from Google as an example; for reference my SCH was the size of the gestational sac)

Thankfully enough, when my bleeding start I was at work and the ER was just downstairs. I tried my best to remain positive when I saw the blood, but as it got heavier, thoughts rushed back from my first miscarriage. I could not shake it, I could not bear going through it again. Unfortunately, and realistically, I knew there was nothing I could do but hope. So that is what I did, I kept faith and hoped. Soon enough I had an ultrasound, I was relieved to see the heartbeat. The bleeding had slowed so I assumed everything was going to be okay. Not the case. The doctor came in and explained the fetal heart rate was quite low and to expect a miscarriage within the week. My heart sank. It sank even harder because everything seemed okay. Everyone told me not to worry, everything looked fine. Moments later, here came the doctor to rain on my parade. I broke down immediately. I could not believe what I was hearing. The flicker I just saw would soon be blown out, yet again.

With a heavy heart I went home to await my early meeting with my new found life. I did exactly what I was told: rest, stay on pelvic rest, hydrate, and try to relax. Easier said than done, but I did just that. My ob/gyn did a follow up, that whole week seemed to drag. To my surprise, there was the flicker with a healthy heart beat. S/he proved the ER doctor wrong; they were holding on. Unfortunately the SCH was still there, but all that mattered was that flicker.

Due to this, I chose to delay announcing. I did not feel comfortable explaining to everyone if a negative event occurred. Around this time, I was still having nocturnal seizures (which is atypical for me) and did not feel like I was going to have a positive outcome. But here I am, with my little one snug inside, telling you my story.

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What about your Seizures?

As of lately, I had not experienced any tonic-clonic or myoclonic seizures. Although, I have experienced a couple more nocturnal and this is becoming concerning as usually all forms stop during pregnancy. To be fair, I did work more than my recommended amount due to missing days. Now I am back on my normal schedule and things have been fine.

I will not lie and say I have not had any anxiety building up as I approach the halfway mark. In my other blogs, I talk about some scary episodes where I had seizures and very well could of compromised my children’s life. This is the unfortunate reality of those who wish to parent and live with Epilepsy. Due to this anxiety, I am starting to look into seizure alert watches as well as requirements for a service dog. I do not think I will meet the requirements for a service dog realistically, but hopefully a watch will be reliant enough. My partner will also be moving in, which will be in itself a huge help and makes me feel safer. As he says “we’re in this together.” I also started to do yoga again and music helps as well with unwinding. I will do everything in my power to keep my family safe – even if it is from my own condition.

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               Doing anything different this time around?

Aside from the fact I was more proactive with folic acid and other supplements and intend to invest in a seizure alert system – I am planning on giving breastfeeding a chance. This will be a completely new experience that again, raises some anxiety. Since the birth of my first child and being strongly advised not to breastfeed while on Keppra, I have been following research carefully. With my second child, it was a more “up to you” response when I approached health professionals, so this time I dug as deep as I possibly could. One site stated that during lactation, doses up to 3500 mg daily produce low levels in breast milk and would not be expected to cause any adverse effects in breastfed infants (https://www.drugs.com/breastfeeding/levetiracetam.html). Luckily, I am under that quota at 2000 mg daily so it would be considered relatively safe by those standards. However, the infant will need to be monitored or drowsiness, weight gain, and developmental milestones as a precautionary. Although, in my case, my children were monitored for this regardless due to being on Keppra during pregnancy. If you have not had children yet, doctors may use the wording “sleepy baby” to describe babies born to mothers on Keppra. Babies tend to sleep more, are drowsy, and/or be more calm than those not born to Keppra mothers.

In another study in 2005, results yielded that levetiracetam does transfer into the mother’s milk, but does not pose any risk or harm to the infant due to very low serum levels. These serum levels were actually lower than what was found in the umbilical cord, therefore breast milk contains less than what the infant was originally receiving (https://www.ncbi.nih.gov/pmc/articles/PMC1363376) . A 2013 study that was published in the Italian Journal of Pediatrics also supports this claim if the dose is below 3000mg a day (or 3g a day as the study states; https://ijponline.biomedcentral.com/articles/10.1186/1824-7288-39-50), it will pose no harm to the infant .

You will find sites stating to not take Keppra while breastfeeding and this may become concerning. Unfortunately, the reason for this is due to lack of studies to completely verify Keppra as safe. You can equally find an number of testimonies of women who breastfed on Keppra and their child having no complications. I suggest talking to your ob/gyn/midwife as well as your neurologist. Often, we have to see a maternal-fetal specialist who you may also ask. From my personal experience, they could never give me an actual answer other than it being my choice. Although, after doing research as well as seeing other mothers who have been through it, I have decided in my circumstance that the benefits outweigh the risks.

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Do you have any information you would like to share?

Any questions you may having regarding Epilepsy and Pregnancy?

Leave a comment below!

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

Onsies for Epilepsy

Hey There!

To all my fellow warriors, fighters, and those who love and support us; November is Epilepsy Awareness month. I challenge YOU to post a selfie or a group photo in your onsies with one epilepsy fact to your social media page. Tag it with #onsiesforEpilepsy this November to help spread awareness and for a chance to be featured (with your permission of course). Please join us in spreading awareness all throughout November and feel free to drop a photo below in the comments!

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←All types of onsies are welcomed; as well as pets→


Working with Epilepsy

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Barriers

As much as I would like to say discrimination does not exist; it does. It is part of human nature to analyze and judge effectively, but it is not part of human nature to ignorance as a form of judgement.

Epilepsy can be scary. It is scares employers, teachers, friends, family, coworkers, and those who bare the diagnosis themselves. It is the unknown of when the next seizure will strike or the unknown of what the root cause is. It is the unknown of how the future will forever be impacted.

There are discrimination laws put into place by the Americans with Disabilities Act (ADA) and Epilepsy does fall under the protection of the ADA; but some places can find loopholes. When they find these loopholes they do not bother to ever ask the person “how does this effect you? How does this effect your work?” They start making assumptions, then base decisions upon these assumptions. My main goal today is to help those who may be new to epilepsy or do not know where they stand under the ADA when it comes to employment.


The Interview

Working with Epilepsy can be a challenge. First question that tends to pop into one’s mind is “am I allowed to work? Should I work?” While we would love to answer that question for ourselves, we do still need to seek an expert opinion. Talk to your neurologist and see if you are cleared for work first and foremost. As much as we love to be independent and make our own choices, we need to make sure we are safe and we are able to keep others around us safe. Also, this documentation that you are cleared for work protects you – an employer cannot use the excuse “well I do not think you are fit to work” based on you having seizures when your specialist says otherwise.

Next question most people have is “when do I tell them?” This can get tricky but if you understand your rights under the ADA, it gets a little easier. When you are applying for a job, an employer “may not ask questions about the applicant’s medical condition or require to have a medical examination before it makes a conditional job offer.” What does this mean exactly? They cannot ask you about epilepsy, if you have seizures, frequency seizures, or if you are on prescription drugs during the interview process. They CAN ask you if you have driver’s license or if you can operate machinery and that portion you must answer truthfully. As for anything else, the employer at that point would be crossing boundaries with the ADA. Before accepting a job offer, you still do not have to disclose the fact that you have Epilepsy or a seizure disorder. ADA does not require those with disabilities to voluntarily disclose their disability UNLESS they will need reasonable accommodations during the interview.  Also, an employer cannot ask questions about your Epilepsy if you have voluntarily disclosed it. They cannot as about treatment either, but the employer CAN ask if you need an accommodation.


After the Job Offer

“What if I start working and realize it is too much and did not request accommodations?” You may request reasonable accommodation after becoming an employee as long as they are made aware of your condition. Now once you have accepted the job offer, they may ask you questions about your Epilepsy,  but since you now have the job, if any repercussions occur it will fall under discrimination. Although, it will not be considered discrimination if you cannot perform the job you were hired to do due to you condition or pose as a direct threat to health or safety of self or others that cannot be reduced or eliminated through accommodations. Employers may not disclose anything about your medical condition or accommodations to other employees either, as this is a breach of confidentiality.

“What exactly are reasonable accommodations?” Some accommodations listed may include: adjustments to work schedules, extra breaks, checklist to assist in remembering tasks, permission to brings a service animal to work, place to rest after a seizure, reassignment to a vacant position if the employee can no longer perform the original job, and so on. Do know than an employer may request a documentation stating that the employee has epilepsy and that accommodations need to be made. Also note that an employer does not have to provide these accommodations if doing so will cause hardship to the company (difficult to do or expensive). Now things here can become grey and it is a fine line to walk upon. If the employer decides it cannot meet the accommodation, they may choose an easier or less costly accommodation as long as the employee needs are met.


My Experience

I have not let Epilepsy stop me from working as my Epilepsy is also not severe enough to keep me out of work. Everyone will have a different experience with Epilepsy and the workplace due to severity, frequency, and type of seizures – but we all still consider the same questions of when to tell. For me personally, I do not require accommodations for work. Do I qualify? Yes. But I do not feel my job is impaired by my condition. Due to this, I decided to withhold the fact I have Epilepsy upon the interview and pre-empolyment process. Once I was officially offered the job and had agreed to take the job, I told health services when I went for my health screening. They asked if I needed accommodations, I said no and I have not heard anything about it since. They were really nice about everything and appreciated the fact that I told them. Since it is on my file, in the event that I ever needed accommodations, I would be able to have them. Ironically enough where I go for my neurologist and where I work is in the same place and under the same company. So if anything was to ever happen, everything possibly needed is already there.

A rule of thumb that I use is if they do not ask, they do not need to know unless it is putting someone else or myself in direct harm. I always tell employers after accepting an offer due to the event if, by chance, I had a seizure at work, they would not panic (this has not happened yet thankfully). I have been dealing with this condition for 5 years so I have a good handle on how this will effect me and my neurologist also has confidence in my knowledge of my condition.

It can be scary to tell you employer, as not everyone will be kind. Telling coworkers is another issue. I have told coworkers in the past and have gotten ridiculed over it so it takes me a while before I find someone I can tell. It is good to have at least one person who knows that works with you, if not then wear a medical ID bracelet/necklace as a precautionary measure. Although, have confidence in knowing you ARE protected and do not be afraid to fight for your rights. You define Epilepsy.


All information was gathered from the following sites, also feel free to visit them to learn more

←For those in the U.K. seeking information→

You may also call the Epilepsy Foundation’s Toll-free Helpline and ask any questions at:

1-800-332-1000
(en Español 1-866-748-8008)

Calls are answered 24 hours a day, 7 days a week.

We are your 1 in 26

“But you don’t look like you have Epilepsy”

     I have heard this line more times than I would like. I cannot help but wonder, what does Epilepsy look like? What do people think we are supposed to look like? Do our faces or our bodies look different? If I showed you some faces, could you pick out who has seizures and who does not?

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     We are your 1 in 26 (U.S.) and we are your 1 in 103 (U.K) who have developed Epilepsy. Were you able to see the difference between yourself and us? Were you able to see similarities if you too have Epilepsy? Truth is, we are not different. Epilepsy does not have a target. Any one, at any age, of any background can develop Epilepsy. Epilepsy is not rare, we cane found anywhere. 65 million people around the world have epilepsy yet there is no definitive cure. There are ways to sustain ourselves and hope that one day it will go away – while for some people, they are able to overcome and become seizure free, others are not so lucky.

       We live our days normally as everyone else. Some of us have families, work, go to school, and volunteer. We have hobbies too. We are people, just like you. We have feelings, just like you. But we face judgement, we face discrimination, we face the looks and the gasps. According to Science Daily; people with Epilepsy are more at risk for facing discrimination than those with other chronic health conditions (https://www.sciencedaily.com/releases/2016/09/160919103618.htm). But we keep going. We keep living our life, but more cautiously. Sometimes we may ask ourselves “why me” but at the end of the day, if it was not for Epilepsy, we would not be the people we are today. It may be part of us, but it is not us.


This is our reality.

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      These pictures range from just hours to a couple of days after the top images. Think about 26 people you know; within hours their life can change. It may come without warning, without cause. We live with uncertainty and worry. This is the reality of living with Epilepsy.

      What else is part of our reality is SUDEP (Sudden Unexpected Death in Epilepsy). Those who are at risk according to the Center of Disease Control (CDC) are those with generalized tonic-clonic/grand mal seizures and those with uncontrolled seizures. Granted the chances are slim in controlled Epilepsy – 1 in 1,000. But for those with uncontrolled activity, the rate is 1 in 150 per year (http://www.epilepsy.com/learn/impact/mortality/sudep). SUDEP does not include deaths due to injuries from Epilepsy – just Epilepsy itself. Some of us wonder what if we become that ONE person? What if our friend or someone in our family becomes that ONE person? It is something that is in the back of most of our minds.


Even as time goes on, not everything fades

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       These photos range from 2.5 weeks to a month after a seizure that resulted in a hospitalization. We bare our marks and we do our best to bare them proudly. Some of us bare marks you cannot see – mental health issues are closely related to those with Epilepsy. With every person who questions “what happened” comes a story about our journey and the journey of others like us. If we can make one person understand Epilepsy and its severity, then we can make the world learn in time. Awareness is key and education is the door we need to get through in order to end discrimination and find a cure.


For more information and statistics/facts about epilepsy visit:

I want to give a huge thanks for everyone who as brave enough to share their pictures; click on the images below to visit some of their blogs and learn more about their journey

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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!

Help!

Do not be afraid to ask for help

Help – a simple four letter word that can grab the attention of almost everyone, yet so many of us are afraid to use it. For myself, I am one of those people. When you get first diagnosed with a condition, in my case Epilepsy, you notice people will start to treat you differently and act different around you. You are more carefully watched and more restricted. While we know it is in good faith, we miss our independence and being our own person. For myself, this made me resent the word “help.” Granted, I did and, to a point, still do need it. For me personally, has been very hard for me to accept. But I did. I asked and I do not regret it.


What type of help is available?

There are many sources of help for people with neurological issues. There are government funded programs, programs by state and country, support groups, help lines, help at school, aid if your condition does not allow you to work, counselors, and so on. Follow the link below to a little directory I made where you can find resources in your area for Epilepsy.


What type of help did you need?

While it may be debatable if I should be working at this current moment according to some people and questionable that I should even be in school this semester. I am in school and I will be going back to work this week – all cleared by my neurologist. Some people will look at me and ask me why I would need help if I am functioning as normal. While yes, I am functioning normally in one sense – my brain is still not up to par. Reading takes a long time, comprehending things becomes time consuming, and information recall/memory recall is still a struggle. Now, what if I am taking a test that is timed (which all of my exams and test are) and I do not finish because my brain is in slow-motion due to medication I HAVE to take in order to prevent seizures from occurring? Is it fair to penalize someone over that – especially when it is not their fault? Of course not! This is the type of help I need. It is still considered help and is still something I had to come to terms with. I did not want to feel different or feel like I cannot handle my workload but the truth is; it is simply not my fault. Neither is it yours. And only now, have I came to terms with this. I have been battling this feeling since 2011 and there is not a thing wrong with asking for help.


What if I need help in school?

Do you think your condition or medication is effecting you and your ability to learn? A good place to start is talking to your primary care physician or specialist. They will need to write you a note with the following information: a statement of condition or diagnosis from a licensed professional, description of how the condition was diagnosed and how it may/typically progresses, some places may require a description of the diagnostic criteria and what tests were done in order to diagnose you, information on how the condition limits your functioning by severity and frequency, your current treatment plan, and the recommendations for reasonable accommodations and an explanation of the need for specific accommodations. This letter will then go to your disability office and they will tell you what resources are available. Note that this is not just for people with Epilepsy, but anyone who may need a reasonable accommodation.


Wait, what is a reasonable accommodation?

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Reasonable accommodations fall under the Americans with Disabilities Act (ADA) and protects those with disabilities against discrimination whether it is in school or in the work place. A reasonable accommodation is “any changes in the work environment (or in the way things are usually done) to help a person with a disability” (https://www.eeoc.gov/laws/types/disability.cfm). It may be requested orally or in writing at any given time (tip: Schools really appreciate this at the beginning of the semester as soon as possible so they can make the accommodations. Sometimes this cannot be helped). Although, there is a loophole for employers; they can deny the accommodation if “doing so would cause significant difficulty or expense to the employer.” This goes by the size of the company and their finances.

A reasonable accommodation may be wheelchair access, extra time on exams, color-coded filing system, flexible work schedule, telecommunication devices, bigger fonts, and so on. It never hurts to ask an employer or school if they can make accommodations so you can perform to your true potential. If you have further questions about if you qualify or want more information on the topic, check out the following links:

←For those from the UK→


Even if you do not need these services now, you never know what the future will hold. It is always good to be informed in case you or a loved one needs an advocate. No one can speak better for you than yourself. But do not worry, there is help along the way

One wish

“What is one thing you wish people could understand about your epilepsy?”

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One thing I wish people could understand is that the medication can be just as bad as having epilepsy. Antiepileptic Drugs (AEDs) help reduce the probability of a seizure occurring by reducing and alternating the excessive electrical activity (or degree of excitability) of neurons. Note that different AEDs work in different ways and have  different effects on the brain. Some AEDs may affect how neurotransmitters send messages or how fast the connection is. The medication I am on currently, as many of you may know, is levetiracetam/Keppra. The best part about Keppra is that they have NO idea how exactly this medication works on the brain – but it does not behave like a typical AED. All they know is that it forces brain cells to fire more slowly to prevent a seizure from occurring. Keppra is still, in comparison, fairly new and still needs more research.

Since my AED slows the brain down completely, I feel this is why my memory and comprehension is so greatly affected. It takes me a while now to understand things and this becomes extremely frustrating. I have trouble recalling things which can become embarrassing. I also have issues with getting words I want to say from my brain to my mouth – granted I did have two (well, three I suppose) events to the head that were considered traumatic and this could be why – I still feel that Keppra may be more to blame. I also wish people would understand that the brain fog we feel is real and comes along with AEDs and Epilepsy.


What is Brain Fog?

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       Brain Fog is not a medically used term, but does sum up what most of us feel from time to time or on an everyday basis. Symptoms usually include: irritability, low energy or fatigue, trouble concentrating, forgetfulness, memory problems, anxiety, confusion, low motivation, mild depression, and trouble sleeping at night. I can definitely vouch and say I feel this way daily but not everyone will. AEDs effect everyone differently but it is good to research and know what to expect. Is it manageable? Yes, for some people. You just need to give yourself time and make proper accommodations. But if you feel that this is unmanageable, talk to your doctor. There may be an underlying cause or a better solution.


Stop and Think

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       Before you start bantering at someone who is taking longer than normal to speak, write, or do a task. Stop and think. Do you see a medical alert bracelet? Do you know this person personally? Haven you had a conversation with them? They might be someone with epilepsy or they might be someone with an illness or disorder that cause similar symptoms to the ones listed above. Please remember to be patient with people; for we all have our own journeys and battles that go unnoticed.

 


More Information

For more information or information on your specific medication, check out:

Feel free to leave comments on your experiences or about how AEDs effected people you know, love, or care for

My Little Black Book

So close, but so far..

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So I keep this little black book as my “possible” seizure diary. I do not normally keep one for my tonic-clonic seizures since they happen infrequently compared to when I was first diagnosed. I say possible seizures because they do not know yet if they are actual seizures. I have these myoclonic jerks almost daily that increase in frequency before my typical tonic-clonic seizures – so people around me tell me. To me, they happen daily so I do not notice them increasing and when I do i chalk it up to something else going on in my life. I, for the first time, went three days without a jerk. I was so excited. Then my brain decided to remind me it was part of my body and whoops, I only made it two days – which for me is still an improvement. Since the Keppra they decreased in frequency, so “go Keppra, go!” So did I lose anyone yet?


What is a Myoclonic Seizure?

Myoclonic seizures are brief jerks of movement, almost like a shock, that involve a muscle or group of muscles. They do not typically last longer than 1-2 seconds and can happen as a single episode or multiple episodes. People without epilepsy can actually experience these with hiccups or a sudden jerk before nodding off. In epilepsy, they can cause abnormal movements in both sides of the body; usually in the neck, arms, and shoulders. The person is conscious and aware of what is going on. These usually begin in childhood, but again can occur at any age. These seizures are often overlooked because they are tossed up as tics, tremors, or as the person being clumsy.

In my experience, now I am not officially diagnosed, these “tics” come randomly. I have had them before my tonic-clonic seizures and before my diagnosis. I am aware and conscious when they occur. I only have had single episodes at a time, but sometimes more than one episode a day. My head, neck, arms, and sometimes upper body/chest is effected and jerks. My head will turn to the side, my arms will sometimes contract in or move upwards, and my upper body will shake. I can feel my body get tense when it occurs and I cannot stop the “tic.”

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Can you have two different types?

Yes! As unfortunate as it may sound, it is perfectly possible. Some people will have seizures that change with age and puberty and others can have multiple types. Now, I did not start having tonic-clonic seizures until after a car accident where my head suffered a laceration needing staples. It is plausible I may have had a seizure disorder before that and perhaps the car accident changed or brought on new seizures. While nothing is definite yet, I have a gut feeling the neurologist is going to lean that way, especially with the frequency and that it happened before I suffered any head trauma. I am not the happiest person ever when I got the news but it could be worse, right?


      Do you have myoclonic seizures or more than one type of seizure in your diagnosis? Comment below and tell me about your story!

Seizure First Aid: How to Respond

What do I do?

       Watching someone have a seizure can be terrifying. They can happen to anyone, at any age, any time, at any place. Would you know what to do?

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  • Airway & Breathing: If you see someone having a seizure, check their airway and breathing. Make note if they are struggling to breathe, if there is blood or drool/foam coming from the mouth, and if they are vomitting. You want to make sure they have a clear airway through this process. While you may not be a medical professional, an easy way and a huge help is to place the person on their side. This allows fluid to drain out of the mouth and keep their airway clear. Some people vomit during their seizure so it is extra important that if you have any uncertainty on what to do, place them on their side.
  • Remain with them for the entire duration: Unless you have someone else there or can get someone else there, do NOT leave them during the seizure. Some types will cause people to completely lose control of their body and consciousness. It is also important that if you saw the seizure begin that you remain or pass on information to the next person so they can get an accurate depiction of what happened.
  • Time the seizure: As soon as you notice someone is having a seizure, make note of the time and when it is over, note what time is ended. This can be very beneficial to the person and medical professionals. If a seizure lasts over 5 minutes – call an ambulance; they need medical assistance and could result in a medical emergency.
  • Prevent Injury: You want to try your best by helping the person avoid additional harm. Move hard objects out of their way, if they are not on the ground already (and depending on the type if it makes them a fall risk) – lay them down on their side or sit them down, loosen tight clothing around the neck, and cushion their head if possible. Do NOT place anything into their mouth as this will cause harm. Do NOT  restrain or hold the person down as this could also cause harm to the person or yourself.
  • Remain Calm: Easier said then done but it is important for you as a caregiver to remain calm. Take a few deep breathes for yourself and focus on getting through each second and each minute until the person comes to. You do not have to call 911 unless the seizure is over 5 minutes, the person is injured in the process, person has back-to-back seizures, not waking up or regaining consciousness after the seizure, or there is another underlying issue that requires emergency personnel.
  • Be Supportive: After a seizure a person may become embarrassed, scared, worried, anxious, distraught, confused, disoriented, tired, or emotional. It is important to listen and remain with the person until they are fully aware and feel safe. If you cannot stay with them, be sure to call someone to be with them during this time. For some types of seizures, you will have to explain everything that happened to the person since they will not remember. Remember: be patient.

Helpful Tips

  • Look for a medical alert band. Not every person will have one but this is an important device with the person’s name, condition, and medication. Some bands will also have contact information – if able, be sure to contact these people to make them aware. If someone is having a seizure and does not have an alert band – if you feel uncertain, call 911 as this may be their first seizure.
  • If this is someone’s first seizure – take them to the emergency room. There might be an underlying condition associated with it and it will give a baseline to their neurologist and physician.
  • Do NOT give the person food, water or pills (basically anything by mouth) until they are fully awake and alert and orientated. This becomes a choking hazard and sometimes can even send food and water into the lungs and cause other issues. How do you know if someone is alert and oriented?
  1. What is your name?
  2. Where are you right now?
  3. What year is it? What month is it? What day is it?
  4. Who is the current president?

     Hopefully you found this helpful and pass it on to your friends, family, and peers!

Remember; education is key.