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.

__________________________________________________________________

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.

__________________________________________________________________

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.

__________________________________________________________________

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.

_____________________________________________

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.

__________________________________________________________________

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.

__________________________________________________________________

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.

__________________________________________________________________

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.

__________________________________________________________________

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!

__________________________________________________________________

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.

__________________________________________________________________

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

__________________________________________________________________

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.

__________________________________________________________________

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.

 

_________________________________________________________________

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.

________________________________________________________________

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.

________________________________________________________________

               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.

________________________________________________________________

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!

14650300_10211139212736322_832220277355812493_n

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


Seizures In Public

0010363618v-849x565

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


Before a Seizure

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

After a Seizure

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

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

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

Acceptance.

 ←PeaceLoveAcceptance→

 

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


Education

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

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

    Be Honest with Yourself

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

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

Grievance

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

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

Perspective

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

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

Strength & Pride

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

Acceptance

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


What Ultimately Helped You?

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

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


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

Relationships and Epilepsy

getty_rf_twofinger

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?

image13

     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.

thumbnail_image2

      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

getattachmentthumbnail

       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

image13

image3

image2

image13

Epilepsy Med-Pack

       Always be prepared

image2

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

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


image3

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

image4

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

thumbnail_image

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

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


Did I forget anything?

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

img_1955