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

 

Embarrassment and Humility: Taking Control

Epilepsy comes in many different forms and strike us in many ways. Some people have auras, which allows them to feel when a seizure is coming on. Some people, like myself, have no idea when a seizure is coming until you wake up in a hospital bed not knowing what day it is or who is around you. But something we can all to relate to on at least one occasion is having a seizure in public. No matter what type of seizure, it can be humiliating, embarrassing, or overwhelming for that person. We all have our own ways with dealing with these type of situations, but here are some tips, tricks, and methods to get you through the post seizure madness.

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Looking at our emotions

Some people may report feelings of embarrassment, humiliation, or feelings of being overwhelmed after a seizure. To help better ourselves and ease these feelings, we must understand where these feelings may arise. Embarrassment itself is a very self-conscious emotion. No one else will experience this emotion but you and not everyone will experience it in the same manner. Embarrassment usually arises from someone feeling as though they failed to act appropriately socially, a sense of guilt or shame, and a feeling as though their guard was let down and their pride was hurt. It tends to be triggered in social situations, like having a seizure in public.  It is also a very socially connected emotion.

In my opinion, having a seizure is a very vulnerable state. You lose control of your body, your thoughts, and your surroundings. You no longer can protect or shield yourself; you can no longer care for yourself and well-being. Your body is just there, on display, for some undetermined amount of time, without you having any control. This can be very overwhelming and trigger a range of emotions. But luckily, there are different ways to deal our feelings.

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Remember: Take Control

How do you take a control when you completely lost control of yourself in front of a crowd of people? People are social and emotional creatures, they will mimic what you project after a traumatic event more often than not. One way to take control is by changing the mood of the situation. One way to do this is by displaying confidence. People will ease their tension and divert attention when they see that you are aware of what is going on and show a level of competency. Everyone will have their own way of taking control of their situation and easing the fears of those around them; another example would be through laughter. While yes, why should you have to worry about how those around you feel; you will find that being able to break the tension and having a sense of control in the smallest ways will help ease your feelings of embarrassment. Even if you only start with taking control of your own thoughts after a seizure, in due time, you will be able to apply it to the masses.

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Laughter

Laughter is the best medicine While yes, there is nothing funny about having Epilepsy or a seizure, laughter can be used as a coping mechanism. If a seizure was to occur around friends or with someone whom you are close and comfortable with, try making light of the situation. I have heard some people say “yeah sorry, my brain malfunctioned” or “what do you mean, you do not pee yourself too?” While this can be very hard for some people to poke some fun at, especially early on in a diagnosis, some people find this a way to deescalate the tension and worry within those around them.

When people see you crack a smile or treat a situation in a relaxed manner, they also tend to relax – seeing it as not an emergent situation. They tend to stop trying to overcompensate for your feelings by being overly concerned and overbearing. Some people want their space after a seizure – a good way to make someone feel safe and give you that space is to make the situation light. This does not have to be directly through laughter of course, one could just simply explain, “oh this happens a lot, nothing new” then point out a positive in the situation. That person or the surrounding people will see that you are handling the situation in a positive way, therefore make it easier for them to feel positive about you.

 How to apply to self: You can apply these methods on a personal level to. Take a moment to lighten the situation from within whether it is through laughter, pointing out positives, or simply telling yourself “here we go again, I got this.” Be positive, be uplifting – you are doing amazing.

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Education

Education? Who is in the mood to give a lecture on Epilepsy and seizures after having one? Probably no one, but there are some beneficial factors for giving a brief synapse of your condition or type of seizures to those around you. Quite similar to what I mentioned in laughter, it helps people ease up and feel confident in your ability to care for yourself. It eases the tension and in return will help you feel less embarrassed or overwhelmed due to being moved out of the spotlight.

Have you ever noticed that nurses tend to give a sigh of relief when they know you have a history of seizures? They are able to make the mood lighter for you and give you the proper time that you need. Aside from the fact that it is probably less work on their behalf, they have confidence that you know what to do to care for yourself. This diverts attention away from you and allows you to reconnect with yourself. This is even more true for the everyday average Joe. If you can show off your knowledge, their attention will go elsewhere and ease the feelings of embarrassment.

 How to apply to self: Remind yourself, you know yourself and your condition best. You know what to do; you know how to manage your seizures. Boost your confidence through what you know. You are a smart cookie, and a tough one at that!

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Getting Answers

Sometimes we get embarrassed when we do not know how things were perceived. The unknown can be quite scary and in the realm of Epilepsy and Seizure Disorders, that unknown realm can be our best unfortunate friend. Finding answers gives us a sense of security and helps us feel calm. Sometimes after a seizure, you need to do just that. Ask what happened, ask who was around, do not be afraid to approach people. You may not see it in the moment, but they want to help – most just do not know how. They are willing to answer and be there for you. They are not passing judgement; although it may feel that way because we did something atypical, yet typical for us. Gain control by getting answers and making the unknown known. You will have a better sense of realizing how people actually feel and that the situation was not as bad as you think.

 How to apply to self: If you are uncomfortable with approaching people, ground yourself. Look at yourself, feel what hurts, see how much time has passed, think of the lease severe seizure you had. Try to answer your own questions by observation and feelings, give yourself that validation that it really was not as bad as you thought. Let yourself breathe.

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Moving Forward

This may be easier said then done for some. How do you just “move on” from having a seizure and becoming what you perceive as a public spectacle?  First, take a moment and breathe. Ground yourself to the present, remind yourself that you are okay. Collect your thoughts and feelings and when you are ready, move one. Literally and figuratively. Just get right back up and keep moving forward. Thank those around you for their help and support, reassure them that you are okay, and walk away like it never happened.

Now, this may require quite a bit of practice and the “fake it till you make it” theory, but there is no reason to linger on something that is not making you feel good. Let your mind move forward, do not dwell on what happened or could have happened, do not put all your focus on the seizure itself – at this moment focus on yourself and your well-being. You are safe, you are secure. This will also no longer make the seizure the focal point. When people see you moving on, they know it is safe for them to move on too. When people see your bravery, even if you must fake it at first, they will be brave for you. You have a lot more control than you think.

 How to apply to self: While even doing this on a personal level only may be difficult, just give it a shot. Let your mind go. Do not get wrapped up on focusing on the seizure and the event, focus on the now and go from there. Prioritize your safety and find comfort in knowing you are still here, you still have a pulse, you still have life left in you. You can get through this, you will get through this. Redirect your attention and focus elsewhere

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Forgive Yourself

You may not feel like you are mad at yourself or that you are blaming yourself, but on a deeper level, that just may be the root cause Even if it is not the situation for you specifically, still take the time to remind yourself, this is part of you – this is NOT you. Epilepsy and Seizure Disorders do not control you or your life. It may try for 5 minutes or maybe even 10-20 minutes, but remember, you are a fierce warrior and you will take your life and time right back and hold onto it longer than it ever could. We cannot control every aspect of our life, with or without seizures – unexpected things will happen, but if we can make peace with ourselves, we are one step ahead.

You are a Warrior.

Keep strong.

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Looking for how to handle with Seizures in Public?

Click the link below!

http://thestorminsidemyhead.com/2016/10/seizures-in-public/

 

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→


Seizures In Public

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


Before a Seizure

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

After a Seizure

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

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

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

Parenting with Epilepsy

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

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

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

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

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


How do you explain to a child about your seizures?

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

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

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

 

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

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


Did this affect them?

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

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


From my Three-Year-Old

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

Kaylin: Lots of doctors…and more doctors.

“Are you scared mommy might have an accident?”

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

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

Kaylin: I like your medicine. It keeps you safe


From my Two-Year-Old

“What is it like that mommy has accidents?”

Autumn: Beans and doctors. Doctors give you beans

“Do you get scared?”

Autumn: mmm (did not want to respond)

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

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


What can I do to keep them Safe?

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

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

Pregnancy with Epilepsy

Warning

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


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My Experience.

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

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

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

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

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

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

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

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

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

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

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


What to remember if you are planning to conceive

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

Facts Behind Epilepsy and Pregnancy

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

For more information visit:


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

Relationships and Epilepsy

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My Experience

“Five years with Epilepsy, you must of went through a lot!” You are right, but not in this department. I have had two relationships from my diagnosis till now and hopefully no more (hint hint, haha). Relationships can be hard and difficult for the average person, but what about dating someone with Epilepsy?

When I first got diagnosed with Epilepsy, it was the right before the start of a new relationship. I was struggling to accept the diagnosis at this point, hiding it from everyone I could and only telling those who had to know. So when I started dating this new fellow, I was not sure what to say or how he would even react. Well good thing for me I did not have to tell him; I actually had a tonic-clonic seizure right in front of him within a week of dating. Thankfully, he kind of knew what to do and we were at his house with a few mutual friends. I eventually came to and I still remember how pale his face was. I must have had a dazed look as I struggled to recognize the faces around me. He started pointing to our friends asking their name and then pointed to himself and I remember yelling out “some dude that I’m dating…I don’t know, I can’t remember, but I know I am dating you” (this became a running joke between us for a while). The next morning, we had a little chat about Epilepsy and my seizures. He was intrigued and concerned, but reinforced me that it was okay and he wished I told him sooner. He willingly drove me to and from work so I could keep my job, let me sleep at his house so it would be a shorter drive and I could have more sleep, and wrote me notes every day when my memory started to fail me. Now I cannot say he was always this sweet. Eventually the epilepsy became a common occurrence before it was under controlled. Side effects from the medication had put stress on our relationship as well as welcoming two children. The pregnancies actually triggered seizures as well as stopped my seizures and that was a terrifying and stressful time. We eventually went our separate ways for very good reasons. Although, one reason on my behalf involved my Epilepsy but that is a story for a different time.

Now with my second and current relationship, things were little different.  I was now a single mother with Epilepsy and in college. To me, I felt like this was already a lot of baggage to be bringing someone. I was always very open and not afraid to tell people I had children at the age of 22. I told him that right off the bat without a care. They were my world. But when it came to epilepsy I hesitated. He already took one suitcase, can he really take another? My seizures were controlled at the time and not frequent. When I went to tell him I made sure to emphasize that part and he was not fazed by it. He told me how he had family in the medical field and he actually went into telling me about his medical problems. It was actually really nice and he made me feel accepted.  It was a while into dating before I had a friendly reminder that I have Epilepsy, but it occurred in my sleep while we were apart. I dreaded telling him but I did the following day. He asked if the girls were okay and told me we would have a relaxing weekend together. A few months later I had another nocturnal, I had always had my myoclonic jerks, and then I finally had my typical tonic-clonic seizure while bathing the girls. This is when he started to really worry.  He worried with the others too and with every jerk, but the severity of the tonic-clonics and the what-ifs worried him more. This was his first experience with my typical seizures. I went on to having a nocturnal again the beginning of this year and he begged me to get a new neurologist as I was fighting to see the one I had at the time. Eventually the next tonic-clonic hit and sent me into a brick wall. That was it for me. I went right to a neurology clinic and got seen the following week.

Now this has put some stress overtime on our relationship. He was constantly worried about me as I still had driving privileges prior. He would be sure to text me and I would be sure text him that I was okay and made it to where I had to go. He would call me every night and every morning. He told me about the day I crashed my car a little later; “I didn’t hear from you that you got to your friend’s house and I started to worry, but then I told myself ‘she’s probably busy studying, she’s always alright’ and you weren’t. I still feel awful. I love you” and tears fell from both of our faces as I never truly understood he was so worried. I typically try to push Epilepsy to the back of my mind. It was not until my pediatric rotation I started to be a little more open and it was not until the accident that I truly stopped caring about judgement with coming forward. This is our reality and people needed to know.


My Boyfriend’s Perspective

You having Epilepsy did not bother me, that does not make you any different. I think the hardest part is the side effects of the medication; I noticed the difference as soon as you started them. It can be stressful. Yeah, I worry every day that something is going to happen to you or that could potentially die; but I know that can be avoided. With the medication, I do not know how to help you with your side effects. I am not sure what to do sometimes. Epilepsy itself does not make you different.


So what do I do?

Be honest – First and foremost always be honest, and tell them BEFORE a seizure happens. If they truly love you or want to be with you, they will want to be with you no matter what. If their opinion changes of you after you tell them you have epilepsy, do you really want to be with someone like that? You deserve better, much better, and there will be better out there for you. You do not need someone like that in your life.

Take the time to explain – Do not just walk up to your partner or potential partner and tell them you have Epilepsy and walk away. Sit down with them and explain to them the type of seizures, the frequency, what they should do for you, and what the medication you take is and potential side effects from them. This will help alleviate their stress and give you a peace of mind. Also, if you ever had a seizure in front of them they would be well prepared in knowing what to do and this could help give them a sense of confidence about your condition. I know it may sound overwhelming but honestly if they are a good person and are right for you, they would listen because they care.

Do not settle – I did not quite mention this but there was a point in my first relationship where I settled. I literally said to myself “who else would want me, I have Epilepsy.” I had a hard time accepting the diagnosis myself and did not have very good experiences with telling others. I felt like no one would ever accept me, so how could they possibly attempt to love me. But trust me, they will, someone will – I promise.

Take care of yourself – Sometimes we do need help, other times we do not. But knowing a seizure could happen without warning can be a stressor for both of you. Be sure to take care of yourself first! Take your medication, avoid triggers when possible, go to your regular appointments, and be on top of your care. This will allow your partner to relax and let you relax too knowing you are doing your very best to prevent a seizure from occurring.

Do not let Epilepsy stop you – Do not feel like you are any less deserving of dating or a good relationship just because you have Epilepsy. You can still go out, you can still enjoy yourself, and you can still enjoy the company of others. You are just the same as everyone else – you are beautiful, you are deserving, and you are amazing.


But wait, when do I tell them?

There is no set time limit on when to tell someone and this varies depending on yourself and when YOU feel comfortable. For me, the first time I was in denial – I probably would have waited a long while before telling him if my Epilepsy did not beat me to it. For my second relationship, I figured I might as well lay it all out on the table. At this point I learned if someone could not accept me for all of me, then I deserved better. I told him in the very beginning – perhaps even at our first date – that I had Epilepsy.

Remember, it is entirely YOUR choice when you tell someone. It is not an easy topic for some to talk about but do keep in mind it also may affect your partner the longer you wait. Just know that no matter what, they will still care for you and love you. They will also be mindful of your feeling about the topic. And if they do not, then take the advice a friend once gave me from a picture she had found:

“Some people will only love you as long as you fit in their box. Don’t be afraid to shove that box up their —”

(well, you get the idea)

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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