Embrace Watch – A Month Long Journey

Last month I did a one week review about the Embrace Watch by Empatica. There were some pros and some cons, now I am here to give you a one month update on how I feel about the Embrace Watch. In this time frame, updates were made on behalf of Empatica and I got a better feel for the watch. If you are still on the fence, take a quick read to help you form an opinion before making the plunge. Click here to read my other review as well if you want more background on the watch. Enjoy! And just for reference, I am not affiliated or sponsored by Empatica – everything that is stated is based on my personal opinion and experience.

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One Month Review – The Pros

As time went on, the watch became far more accurate with my sleep and activity cycles. It has not confused the two or doubled them together, as this was an issue I had within the first week. On May 17th, I had an episode of a questionable seizure, I woke up not breathing which occurs during my seizures at times. Now the watch cannot pick up seizure activity for me because I am currently pregnant, but it did pick up that instance. It recorded it as an interruption and paralleled the same time a woke up during the night gasping for air. No, I do not have sleep apnea, never had pregnancy induced sleep apnea, never had any issues of this. I was quite pleased and excited it recorded this activity, just wish it could of recorded any convulsions. I will say that day, my body reacted as it would for a typical nocturnal seizure – so I am leaning more towards that being the case.

Another amazing accomplishment, I got the Mate App to finally work on my LTE network. It was the most frustrating thing ever to not have access if WiFi connection was not established. Granted I still need the Wifi to be on, even though it is not connected, I was finally able to access the Mate App.

I also have not had any issues with the charger, thankfully. Everything in that department seems to be in working order. Also, with the new update – GPS location tracking is now a thing! This was great news and I was super excited about this since I am out cold for what feels like forever. This will allow my family to locate me and help get assistance to me if any was to occur when I was alone or at school/work.

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The Cons

A common issue that has been reported through the community is issues with Bluetooth. I had not experienced an issue with Bluetooth at all prior to May 24th – when I went to Connecticut and stood at a more rural location than where I live and work. The Bluetooth range was not the same as it was at my house, it disconnected and reconnected more frequently, and seemed to struggle more with transferring information. I thought this was strange, so I made a point to carry my phone with me at all times – still had issues from time to time. At first, I thought perhaps it was my phone, but when I returned home, it was fine. I am curious on where the other people are located who have issues with the Bluetooth – location may play a role in this.

If you have been following Empatica’s blogs, you may notice the service charge fee will be going into effect soon. Now, you are free to test the services yourself, but when your trial is done – here is the price breakdown:

  •                 Lite: $9.90/month -Alert one contact when a seizure is detected
  •                 Standard: $19.90/month – Alert 3 contacts, also notify them by text as well as phone call. In addition, they will Receive the GPS location. You will be able to also have access to the “Rest Mode” – which helps the sensitivity of detecting seizures.
  •                 Plus: $44.90/month – Alert unlimited amount of contacts, alert by text with GPS as well as having access to “Rest Mode.”  Includes summarized monthly reports capturing your seizures, rest, and physical activity.

Now logging of seizures, activity, and sleep on the Mate App will still be free – but the main purpose of why so many bought into the watch is not. Now, my personal issue here is the overall price for a product that is still quite honestly – needs some more work. The price of the watch is already steep, now you are going to ask for payment when it needs more fine tuning. I cannot get myself past that.

Of course, if you are a parent/caregiver paying for this – sure it may be worth it to you. Now, if you are more in my position and must pay for the services yourself and can only work a limited amount of hours due to Epilepsy – it can get pricey after a while. My whole purpose of buying this watch is now tacked on with a monthly fee. I do not even know if this watch will even truly pick up my seizures yet. If you go into the community Facebook page – some people who have tonic-clonic seizures do get picked up, some do not. There are still a lot of issues with false reporting/notifications. I personally feel they should have waited a bit longer before imposing this, but this is their decision and to me – a huge turn off.

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Final Thoughts for Month One

As much as I do enjoy and love the watch, I do not think it is worth or up to par to have a subscription fee just yet. Will it get there one day? Definitely, but I do not feel it is there yet. Again, this is just my opinion. I strongly feel that they should allow ONE contact, at the very least, to be notified in case of a seizure – to me that was a huge selling point.

Now to be fair, there is another watch by Smart Monitor, called SmartWatch that also detects tonic-clonic seizures. This also requires a fee for the watch as well as a subscription fee that is similar to the Embrace Watch when it comes to contact. Now, they do not give you a break down on their site upfront, but from a UK site – for a single contact to be notified, it will cost around 15 EUR which is $16.90 USD. So Embrace is a cheaper option in comparison, but I cannot comment on which has a better ability and accuracy level.

For me personally, at this moment of time, the watch is of no use to me. I cannot fully use it till after pregnancy and then between school, work, and a newborn – I will have to manage money for a monthly fee on something that is still a work in progress and may not even work for me. So, I have decided to find this watch a new home. There are people out there who could use it now and use it more so than myself. While yes, I am terrified of what is to come after childbirth and going through seizures without warning…I am not sure if this watch will actually be able to help. I sincerely hope someone else can reap the benefits and have a sense of security.

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Are you unhappy about these changes?

A petition has been started by Rachel C. – a fellow Embrace user –  to use our collective voice in hopes to see changes be made about the new subscription fee. I ask you to take time to consider signing this petition, even if you do not decide to purchase this device. If you are just as unhappy about these changes as us, please sign and share! Just click the photo below

 

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

 

 

 

Possible Precursor to Epilepsy

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There is not much of a surprise when you hear Epilepsy and Psychiatric Disorders are connected. People would expect that due to receiving the diagnosis or if there was a structural abnormality that may interfere with the brain’s normal processing. There has been a lot of research showing a clear comorbidity between the two. A thought I have always held onto and had not looked into further was if psychological conditions could serve as precursors to Epilepsy. A member reached out to me personally asking if I could do a little research which ended up dabbling into my own questions. I will present to you quick synapses and links to research articles that may make you begin to ask questions.


 

  • Schizophrenia-like Psychosis and Epilepsy: The Status of the Association

Source: https://www.ncbi.nlm.nih.gov/pubmed/9501741

Date: 1998 (yes, technically deemed outdated – but for reference purposes)

What is it saying: Epilepsy may be related to schizophrenia-like psychosis due to structural brain abnormalities (e.g. cortical digenesis or diffuse brain lesions). Seizures may modify the presentation pf psychosis and psychosis may modify the presentation of seizures.

  • Bidirectional Relation Between Schizophrenia and Epilepsy: A population-based Retrospective Cohort Study

Source: http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2011.03268.x/full

Date: September 19, 2011

What is it saying: Incidence of Epilepsy is higher in those with Schizophrenia and Schizophrenia patients have a higher incidence of Epilepsy. Thus, the two conditions may share a common cause

  • The Secondary Schizophrenias

Source: http://onlinelibrary.wiley.com/doi/10.1002/9781444327298.ch9/summary

Date: March 08, 2011

What is it saying: Epilepsy may/can cause Schizophrenic-like signs and symptoms which can lead to Schizophrenia-like psychosis

  • Schizophrenia Like Psychosis in Patients with Epilepsy Case Report

Source: http://www.ucms.com.np/journals/vol2/SCHIZOPHRENIA%20LIKE%20PSYCHOSIS%20IN%20PATIENTS%20WITH%20EPILEPSY%20CASE%20REPORT.pdf

Date: 2013

What is it saying: Epilepsy and Schizophrenia are both due to altered cerebral functioning and their history is often connected. Focuses on generalized tonic-clonic seizures presenting with schizophrenia-like symptoms

  • Recurrent Schizophrenia-like Psychosis as First Manifestation of Epilepsy: A Diagnostic Challenge in Neuropsychiatry

Source: https://www.dovepress.com/recurrent-schizophrenia-like-psychosis-as-first-manifestation-of-epile-peer-reviewed-article-NDT

Date: May 03, 2010

What is it saying: Studies have been done on Schizophrenia-like psychoses in Epilepsy since 1950s. It has been well documented that Epilepsy may be associated with psychotic disorders but, less widely recognized that the relapsing psychotic phenomena may be the first and only symptom of Epilepsy. This case study was focused on two patients specifically with an initial diagnosis of Bipolar Affective Disorder and Schizophrenic Psychosis. Treatment began using more epileptic tactics and during a follow-up, patients were free of Epilepsy and psychotic symptoms.

  • Epilepsy, Suicidality, and Psychiatric Disorders: A Bidirectional Association

Source: http://onlinelibrary.wiley.com/doi/10.1002/ana.23601/full

Date: August 07, 2012

What is it saying: Psychosis, depression, and anxiety significantly increase before Epilepsy diagnosis and after as well as one year after diagnosis. This shows that an underlying pathophysiological mechanism seen in both that lowers the seizure threshold and increases risk for psychiatric disorders

  • Hospitalization for Psychiatric Disorders Before and After the Onset of Unprovoked Seizures/Epilepsy

Source: http://www.neurology.org/content/78/6/396.short

Date: January 25, 2012

What is it saying: The risk of developing an unprovoked epileptic seizure is highest less than 2 years before and up to 2 years after a first psychiatric diagnosis (includes: depression, bipolar disorder, psychosis, anxiety disorders, and suicide attempts). Higher prevalence with those having depression and psychosis.


Wait, what does this all mean?

While yes, this is open for individual interpretation to some degree – you cannot deny there is a strong correlation between psychiatric conditions and psychosis with Epilepsy. At times, it appears this may be the initial or only sign of Epilepsy and could serve as a precursor to an eventual epileptic diagnosis for some people. Unfortunately, there is a gap between psychiatry and neurology that may allow some people to fall between the lines to be conveniently pushed into one section or another. I believe that this is what also makes Psychogenetic Non-Epileptic Seizures (PNES) so difficult and avoided. What if PNES is a soft-name for a precursor to  Epilepsy? What if we can catch Epilepsy through psychiatric disorders before the onset of a seizure? For me, this has opened up a lot of questions and I hope it made you think too. If you feel as though your psychiatric diagnosis does not quite fit your situation, do not be afraid to question your doctor. If you feel as though your PNES may be more epileptic, again, question them. Of course, this situation may not be for everyone, but questions get answered. Don not be afraid, advocate!


What are your thoughts or opinions? Did this get you thinking?

Share in the comments below!

 

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!

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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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