Epilepsy Blog Relay: Traveling as an Autistic with Epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Have you ever wondered what it’s like to travel as an autistic adult with epilepsy? There are many barriers that can hold us back. It can be even more challenging when you have a child who is autistic with epilepsy as well! It is about planning, researching, and taking charge! Let’s explore what options are available for those with disabilities and different abilities. This is for all those wanting independence to travel, but not sure how to find it.

Excerpt from Article

Epilepsy can change many parts of the lives of those who live with it every day. We lose our independence from driving a vehicle, taking a bath, and traveling. Planning a trip locally takes less energy and effort but traveling distances can be a daunting task. So, what happens when someone wants to travel farther lengths or internationally? Let’s take a look at a few areas to think about when an epileptic need to travel for a long length of time or distance. Also, an interview with the parent of an autistic teenager with epilepsy who is planning a trip to Italy, desperately seeking answers.

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Epilepsy Blog Relay: Andy takes charge of his epilepsy

This post is part of the Epilepsy Blog Relay™. Follow along all month!

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.

For more information, please see the APTIOM Medication Guide and Full Prescribing Information on APTIOM.com. This is Andy’s story and individual results with APITOM® (eslicarbazepine acetate) may vary.

Additionally, please see Important Safety Information at the end of the blog post.

Andy’s Story

I was diagnosed with partial-onset seizures at eight years old, and, at the time, I had no idea what this meant. I was confused, and so was my family. We quickly learned that there was a lot of confusion surrounding epilepsy and we needed to get educated. One of the hardest parts of living with epilepsy for me was definitely the daily uncertainty. Not knowing when I would have a seizure made me feel closed off. My partial-onset seizures started mildly when I was younger, which I could hide pretty well because to people at school it just looked like I was spacing out.

As I got older, I got more active and had more going on. I started playing sports at the agreement of my doctor, but also dealt with the nerves of taking more tests in school and just having the typical stresses of a teenager. All of these stressors were often triggers for me. I continued to live my life, but I had to be cautious and this caused anxiety. The uncertainty of every day was extremely frustrating. It totally changed the way I was interacting with the world because of this high-risk lens on life that kept me highly conservative—certain days I felt great and there were no causative factors I could put a finger on, but seizures would still come on totally randomly.

In my attempt to pretend like I didn’t have epilepsy day in and day out, I’d always push myself too far. I took an investment banking job after graduating college. That was super stressful and I hardly got any sleep—all the ingredients you don’t want for epilepsy. My health held up, but it wasn’t sustainable. Later I moved to Philadelphia, and as soon as I got a better work/life balance my health took a turn for the worse. I really wasn’t doing well and my partial-onset seizures were occurring more frequently. Eventually, after working with my health care team, we added APTIOM adjunctively to my treatment regimen.

APTIOM is an FDA-approved prescription medicine for patients four years old and older that can be used alone or with other medicines to treat partial-onset seizures. I take one pill a day, at the same time every day. So far, my doctor and I have been pleased with the reduction in the frequency of my partial-onset seizures. Of course, this is just my experience and yours may be different. It’s very important for people to discuss all the potential side effects of any medicine with their doctor before starting treatment. The most common side effects in patients taking APTIOM include dizziness, sleepiness, nausea, headache, double vision, vomiting, feeling tired, problems with coordination, blurred vision, and shakiness.

Managing epilepsy, particularly into adulthood and as my own advocate, is really tough. When you have epilepsy, you find that so much of your mental space is consumed with epilepsy and the unknown. How did I sleep? What did I eat? Am I more stressed? That uncertainty of epilepsy is ever-present. Now, I’m more proactive about the management of my epilepsy. I’ve found a doctor here in New York who I communicate and collaborate well with, and every time I have an episode, I try to understand those contributing factors. I created a seizure diary especially for when it would get bad. It’s a proactive effort to try to find the best way to deal with my partial-onset seizures. I feel like I’m doing what I can every day to take charge my epilepsy.

Indication:
Aptiom® (eslicarbazepine acetate) is a prescription medicine to treat partial-onset seizures in patients 4 years of age and older.

Important Safety Information:

It is not known if APTIOM is safe and effective in children under 4 years of age.
Do not take APTIOM if you are allergic to eslicarbazepine acetate, any of the other ingredients in APTIOM, or oxcarbazepine.

Suicidal behavior and ideation: Antiepileptic drugs, including APTIOM, may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your doctor right away if you have any of the following symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying; attempting to commit suicide; new or worse depression, anxiety, or irritability; feeling agitated or restless; panic attacks; trouble sleeping (insomnia); acting aggressive; being angry or violent; acting on dangerous impulses; an extreme increase in activity and talking (mania); or other unusual changes in behavior or mood.

Allergic reactions: APTIOM may cause serious skin rash or other serious allergic reactions that may affect organs or other parts of your body like the liver or blood cells. You may or may not have a rash with these types of reactions. Call your doctor right away if you experience any of the following symptoms: swelling of the face, eyes, lips, or tongue; trouble swallowing or breathing; hives; fever, swollen glands, or sore throat that do not go away or come and go; painful sores in the mouth or around your eyes; yellowing of the skin or eyes; unusual bruising or bleeding; severe fatigue or weakness; severe muscle pain; or frequent infections or infections that do not go away.

Low salt (sodium) levels in the blood: APTIOM may cause the level of sodium in your blood to be low. Symptoms may include nausea, tiredness, lack of energy, irritability, confusion, muscle weakness or muscle spasms, or more frequent or more severe seizures. Some medicines can also cause low sodium in your blood. Be sure to tell your health care provider about all the other medicines that you are taking.

Nervous system problems: APTIOM may cause problems that can affect your nervous system, including dizziness, sleepiness, vision problems, trouble concentrating, and difficulties with coordination and balance. APTIOM may slow your thinking or motor skills. Do not drive or operate heavy machinery until you know how APTIOM affects you.

Liver problems: APTIOM may cause problems that can affect your liver. Symptoms of liver problems include yellowing of your skin or the whites of your eyes, nausea or vomiting, loss of appetite, stomach pain, or dark urine.

Most common adverse reactions: The most common side effects in patients taking APTIOM include dizziness, sleepiness, nausea, headache, double vision, vomiting, feeling tired, problems with coordination, blurred vision, and shakiness.

Drug interactions: Tell your health care provider about all the medicines you take, including prescription and over‐the counter medicines, vitamins, and herbal supplements. Taking APTIOM with certain other medicines may cause side effects or affect how well they work. Do not start or stop other medicines without talking to your health care provider. Especially tell your health care provider if you take oxcarbazepine, carbamazepine, phenobarbital, phenytoin, primidone, clobazam, omeprazole, simvastatin, rosuvastatin, or birth control medicine.

Discontinuation: Do not stop taking APTIOM without first talking to your health care provider. Stopping APTIOM suddenly can cause serious problems.

Pregnancy and lactation: APTIOM may cause your birth control medicine to be less effective. Talk to your health care provider about the best birth control method to use. APTIOM may harm your unborn baby. APTIOM passes into breast milk. Tell your health care provider if you are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. You and your health care provider will decide if you should take APTIOM. If you become pregnant while taking APTIOM, talk to your health care provider about registering with the North American Antiepileptic Drug (NAAED) Pregnancy Registry. The purpose of this registry is to collect information about the safety of antiepileptic medicine during pregnancy. You can enroll in this registry by calling 1‐888‐233‐2334.

Get medical help right away if you have any of the symptoms listed above.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1‐800‐FDA‐1088.

For more information please see the APTIOM Medication Guide and Full Prescribing Information on APTIOM.com.

APTIOM is a registered trademark of BIAL, used under license.

SUNOVION is a registered trademarks of Sumitomo Dainippon Pharma Co., Ltd.

Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd. ©2019 Sunovion Pharmaceuticals Inc. All rights reserved. 6/19 APT-US-00133-19

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.


NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Creating Your Personal Mantra

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Christalle Bodiford is an artist, advocate, writer, and adventure seeker. As an entrepreneur diagnosed with epilepsy, Christalle brings a unique perspective of empowerment that inspires others to embrace a positive mindset and live with purpose. When she’s not writing or advocating, Christalle enjoys puppy snuggles with her scruffy terrier and outdoor adventures with her husband.

Post Excerpt

Have you ever used a mantra to help you through a tough time in your life? Maybe you’ve never heard of using a mantra… so what is it? A mantra is a statement or slogan repeated frequently. Even something as simple as “You’ve got this!” can be a mantra. Mantras are recited for various reasons and there are endless possibilities of what you can come up with for your own mantras. “A mantra, whether chanted, whispered, or silently recited, is a powerful meditation and therapy tool.” Coming up with your personal mantras can be a creative and fun process.

Read Christalle's Post

NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: When taking it slow helps seizure control

This post is part of the Epilepsy Blog Relay™. Follow along all month!

Hayley’s Story

I wanted to share some thoughts about the virtue of patience and how you have to learn to develop it by the bucket-load to be able to cope when living with uncontrolled epilepsy.

Living with uncontrolled epilepsy

I have a little wooden box which my sister bought me. It’s full of little metal talismen (is that the plural of talisman?). It comes with a key-ring pouch and you pick the one which you need most every day to carry around with you to remind you to think about that virtue (strength, hope, courage, patience etc) as a coping strategy.

Changing Medications

One major element of epilepsy which requires patience is when changing medications and waiting for appointments. Nobody warns you it’s going to be loooooooooong! Even as the neurologists or nurses blithely write out your drug charts with dosage instructions when transitioning from one drug to another it never fully registers that they’ve organised the change over a period of 16 weeks! That’s a third of a year. A third of a year for potentially feeling awful (and often progressively worse as the dose increases) while you grit your teeth and try to remember that the therapeutic dose you are working towards might be the magic bullet. It’s really tough. It’s by no means unique to epilepsy but these things can’t be done any faster, so all you can do is learn to be patient.

Waiting between doctor appointments

The gaps between appointments drag horrendously as well. It doesn’t matter how much you rationalize that there isn’t any point in anyone seeing you if a medication change isn’t complete. It still feels like you are being ignored and you find yourself wanting to be pointlessly poked and prodded to see if there is something that has been missed.

My neurons, in a literal sense, go haywire if I do anything too quickly. My personality is naturally pretty intense; I’m not content unless I’m insanely productive. So, being reduced to a state where knowing the safest and most sensible way to get anything done is by moving at a snail’s pace has taken a lot of patience while I adapt.

Slow is the new fast

I am getting there, time has passed and slow has become the new fast. Getting up in the morning takes about two and a half hours; this works for me. Most of the time I can minimize my seizures this way and if they do come, I wait them out by patiently willing my brain to calm itself down. The other alternative (because patience isn’t always a practical option if I have to hurry somewhere) is to take a tranquillizer. This speeds up the calming down process for me but I’m sure you can agree it’s not really ideal.

Slow cooking wins

Cooking dinner is a slow process. Gone are the days of the Jamie Oliver meals in minutes for the stressed nine-to-fiver in our house, everything is put in the slow cooker or oven roasted. It’s safer and it minimizes the risk of burnt dinner and burnt me if I need to take time out for whatever reason. Again, with a bit of patience we still get to eat balanced meals every day.

Eco-friendly transportation

I can’t drive so I have to walk (or use public transport) which usually takes longer. It’s not the nicest in inclement weather but it’s good for me and the environment so it has it’s benefits. Being calm is one of the key elements of managing my epilepsy so I just have to remind myself what happens if I do try to (metaphorically and literally) speed up.

I wish I could honestly say the world would be better if we all slowed down but I’m not quite there in terms of believing that yet. It’s okay though, sometimes going at a slower pace can be rewarding. I didn’t chose my circumstances and I liked doing everything at pace but slowly, slowly isn’t as bad as I thought it would be.

Patience wins

The last element I’d like to touch on in terms of raising awareness is the patience which those around you need if you’re living with epilepsy. The patience to look on while we tantrum and rant about how badly things are going and how horrible we feel, while you can’t do anything to fix it. The patience to take on an extra load because we’ve started something and then realized epilepsy isn’t going to let us finish it and the patience to wait for us while we sit around looking lazy because our bodies and brains are exhausted or if we need to take a break half way through an everyday activity. My memory isn’t too badly affected yet but you might also need to learn to be patient while we struggle to get our words out or remember what we wanted to say. Unless you happen to be a nurse who specializes in chronic conditions we know you weren’t any more equipped to deal with this than we were. It’s just one of those things we’ve got to learn to work with together.

I hope this helps someone who is new to the journey, developing virtues doesn’t have to be as deep and meaningful as it sounds but reality of the situation is, unless you get really lucky, some things may take a really long time and the sooner you can learn to listen to your body the better you will fell, even if you can’t fix the seizures.

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