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Next Steps for Adults Newly Diagnosed with Epilepsy

May 1, 2024

By Amber Kaiser

As people can often relate in hindsight, there are many things I wish had been different when I was eventually diagnosed with epilepsy as a young adult at 21. Like others diagnosed with medical conditions that can change their lives, it’s hard to be present, absorb the reality of the condition and accept it. It takes time to consider any challenging medical diagnosis, and feelings like fear, anxiety and heartbreak, I believe, are natural reactions to the news of the unknown as well as the idea of now having something that can affect your everyday life—the way your life is presently or the plans you have for the future are forever altered—many of us can connect to each other in relation to this in some way.

What’s tough is that, when we are diagnosed with epilepsy, we are so new to the concept and often don’t know anyone in our circles that has it (or that we know of) because, understandably, many people are afraid to talk about it. Depending on our circumstances, we may also not have immediate support from family or friends–especially when being diagnosed as an adult–so it takes time to let things sink in and eventually be open to finding others who are going through the same thing. When you are ready to start your own research, it can actually be much easier to find others with epilepsy today because of technology and everyone and everything being so connected.

For many years, I’ve thought about what I wished was different and how to make something like an epilepsy diagnosis more “digestible” in the beginning. I often experienced–and still do sometimes–the feeling of disconnection with my doctor when I don’t know what to ask and the wait time between appointments is six months to a year or longer. 

In order to make it somewhat easier to adapt to living with epilepsy, here is my “All in One” overview of both resources and understanding of what it’s like to live with epilepsy and uncontrolled seizures from my own personal experiences as well as what I’ve learned working in the field the last two years. After your first appointment—or like many of us—after multiple appointments and countless seizures before you are “officially” diagnosed with epilepsy by a doctor, you have no idea what you are getting into with starting to have regular specialist visits, taking AEDs every single day, multiple times a day which often have serious side effects as well as figuring out how to adapt to the frequent, unplanned experience of living with seizures and all the side effects on your brain and body.

Thoughtful Next Steps After an Epilepsy Diagnosis

Processing an epilepsy diagnosis takes time

Denial can be normal and eventually coming to acceptance (hopefully) can be a long process and individual to each of us depending on our current circumstances and life experiences. When you are open to it, consider checking out my article sharing tips about the process of accepting living with epilepsy. When you start taking medication, even if it eventually controls your seizures, there is always a possibility of breakthrough seizures, and currently, there is no cure for epilepsy. So living in fear and feeling a lot of anxiety can be common for many people with epilepsy. Coming to a point of your own acceptance–whatever level that is–can help ease your fears and lessen the mental and emotional blow if and when you have breakthrough seizures.

Like autism, epilepsy is a spectrum

Everyone’s brain is unique and someone can have seizures multiple times an hour, several times a day, once a week, multiple times a month, a few times a year, etc. Everyone’s brain is different. The kinds of seizures you have can also vary depending on where they start in your brain, whether they spread and become a generalized seizure (when they affect your whole brain and you become unconscious) and where they are in the brain also determines the kinds of side effects you feel and what the seizures feel like if you are conscious while you’re having them and overall how they affect your brain. I wrote an article sharing my experience of different kinds of seizures and what they feel like stemming from my left temporal lobe both while I’m conscious and when I remember waking up after them including nocturnal generalized seizures which happen when your whole brain is affected and you become unconscious while you are sleeping.

Know that you aren’t alone

We have many epilepsy support resources available today to help you and easy ways to connect with others both online and in-person depending on where you live. Epilepsy Alliance America and Epilepsy Foundation are two of the largest national organizations with chapters and epilepsy foundations available in every state. Brain Ablaze is a very relatable social media platform to follow and they also have monthly Zoom meetings you can attend to meet other adults with epilepsy. What the EF Podcast started a few years ago and you can listen to other people living with epilepsy share their experiences on the show. You can also check out my list of epilepsy support groups and epilepsy organizations and foundations by state in the U.S. as well as Canada to see if there is an organization near you if you want to attend any in-person events.

Starting to take epilepsy medications everyday can feel horrible

If you don’t already have a daily habit of taking something, it will take time to adjust to taking an epilepsy medication or anti-epileptic drug (AED) everyday, multiple times a day, and the side effects of AEDs can be very serious on your body and brain and often feel horrible. When you are prescribed an AED, I would advise you to research the seizure medication online while you are starting to take it. Find out what other people are experiencing as well and see if you are interested in any other AEDs to talk with your doctor about trying. Today, we also now have access to CBD/THC products with less disturbing side effects and that could be an option to consider talking with your doctor about as an addition to lessen the dosage of your medication depending on the kinds of seizures you have. Also, if the drug you are prescribed doesn’t have a generic form, or if your doctor requires you to take the brand name, AEDs are often very expensive (even if you have health insurance), especially if they are new on the market. If you need help, check out my article about how to get help accessing your epilepsy medication.

If you find that AEDs don’t start working for you within the first year, especially if you are willing to go through all the side effects of trying a few different AEDs in a short amount of time, there are other long term options. Staying at an Epilepsy Monitoring Unit (EMU) and getting tested for brain surgery eligibility could be another avenue to seizure freedom. Read my article about the latest brain surgery for seizures options and epilepsy at this time to learn more. You can also learn more about my own personal experience with epilepsy and brain surgery.

In order to make sure you get the best care, you have to learn how to be an advocate for yourself which can be really hard if you are naturally in denial or not getting a lot of moral support so you really have to make the decisions for yourself which I understand are tough while you are experiencing all the side effects of having uncontrolled seizures. Just remember, the more educated you are, the more questions you have to ask your doctor and that may also help you decide if you actually need to see a new doctor.

If you have uncontrolled seizures after trying AEDs, find an epileptologist ASAP

As advised by the National Association of Epilepsy Centers, if your seizures continue after seeing a neurologist and taking AEDs for at least 1 year, it is time for you to find an epileptologist, a neurologist that specializes in epilepsy. And, honestly, with everything I’ve personally been through for years trying different AEDs and the very high levels of AEDs I’ve been on in the past as well as the fact that epileptologists are available today, I would find an epileptologist even sooner, especially if you’ve already tried more than one medication and nothing is working. Seeing an epileptologist doctor who is also part of a Level 3 or Level 4 Epilepsy Center would help you get the best epilepsy care available today. You can search for Epilepsy Centers to see if there are any located near you. The Epilepsy Foundation also provides a really helpful database in partnership with the American Epilepsy Society to make it easy to find an epileptologist and search even further by their “primary specialty” like SUDEP, brain surgery and adult neurology/epileptology. If you don’t live close to any, remember virtual appointments are very commonly available today.

For nocturnal seizures, we now have at home sleep monitoring

If you have nocturnal seizures (seizures during sleep), it can be very scary for you and your loved ones, but helpful to understand that you may be at a higher risk for SUDEP (Sudden Unexpected Death in Epilepsy). Fortunately, we now have products like Neureka Sleep, that can help monitor you while you sleep. It detects your heart rate, heart rate variability and blood oxygen levels so that when anything goes out of a normal range (which can also be adjusted to your “normal” levels), your emergency contacts are notified through a text message or phone call. Speaking from experience, Neureka Sleep gives you much needed peace of mind as well as to your caregivers or emergency contacts–everyone sleeps better knowing you are being monitored at home. 

You can get Neureka Sleep a few different ways now–we have membership options including an annual and lifetime membership as well as financial assistance available with grants through the Chelsea Hutchison Foundation and Danny Did Foundation. Depending on your insurance, you may also get FHA/HSA reimbursement through your health savings account. Email us at hello@neureka.ai if you are interested in learning more and have any questions.

Talking with family, friends and work if you feel comfortable

Developing or finally being diagnosed with epilepsy as an adult is a different experience for everyone depending on what your current circumstances are. Some people have close family or friends that are open to taking the journey with you, others live by themselves and have to start finding resources and reaching out to people who they feel comfortable with sharing and getting help however they can. I also hope more doctors are being open today to sharing epilepsy resources since they are often still our first point of contact in the world of epilepsy which is why I have often thought of putting something like this together.

Sharing your epilepsy diagnosis with your work can also be very challenging depending on your situation–if it’s a new job it can be much harder and you may choose not to (which I understand; I was laid off from one of my first jobs early in my career for mentioning it so you have to be careful), but if you’ve had your job for a while and already “proved” yourself, or you work with a large company that legally has to accommodate and work with you if you develop a disability, it may be easier to communicate with your colleagues or leadership. In fact, the new Seizure Action Plan Coalition has created user-friendly Seizure Action Plan (SAP) documents that you can share with your team if needed when you feel comfortable.

Considering your new transportation restrictions

Back in my early days, when it came to transportation, I felt like I had no options and suddenly being restricted in driving can change your everyday life. This was long before Uber and Lyft, and I didn’t even think of looking into public transportation (which can be helpful if you live in a large city, but realistically, very inconvenient with scheduling and altering any routines you have been used to). Luckily, today, we have 24/7 rideshare services like Uber and Lyft and if you connect with the Epilepsy Foundation free 24/7 Helpline you can ask them if they have any other ideas and see if they offer any discount information for rideshare services. I’ve also recently learned with one of our Neureka Sleep users that most city bus systems also have “paratransit services” for people with disabilities and they can actually be less expensive than Uber or Lyft. I’m not sure how convenient they are, but you can always connect with your city transit system and ask them if there is a “paratransit system” in your area to learn more.

Learning to live with the epilepsy stigma

We like to think that the social stigma of epilepsy is getting better–and I think it can be depending on who your social circles are and the circumstances in which you mention epilepsy or actually have a seizure in public–but the stigma is still alive and you may come to a point in your life when it happens and you feel discriminated based on having epilepsy. It’s tough and that’s why a lot of people still don’t talk about it, especially in the workplace. I lived in silence for many years so I understand. I think the best thing to do is remember the supportive people who are in your life even if it’s just a close few.

If you have experienced discrimination and you are going through a really hard time learning how to live your life with epilepsy, consider calling the Epilepsy Foundation free 24/7 Helpline at 1-800-332-1000. They understand what you are going through with having seizures and offer suggestions with any questions you have. Especially if you don’t have a close support network, you can always reach out to them for someone safe to talk to and ask questions.

In closing, processing and eventually learning how to live with an epilepsy diagnosis takes time. And it makes all the difference in your life when you can start to accept and learn how to become your own health advocate which is a different journey for all of us. It took me many years to get to the point where I’m at now.

As an adult diagnosed with epilepsy, our experiences can be entirely different from a child being diagnosed for many reasons—not only are you going through the experiences of dealing with seizures, AEDs and all the side effects of each and how they change your everyday life–but you are also often still responsible for your own well-being, your job and financial support, your family and children if you have any, and it can be really tough to say the least. Speaking from my own experience and after interviewing many epilepsy caregivers, I can honestly say, a higher functioning adult with epilepsy can relate to epilepsy caregivers as well because they can often be their own caregiver while going through the process of figuring out “the world of epilepsy” even while they are experiencing it first-hand. If you feel that way, it’s normal and I hope my suggestions have made the process easier for you in some way. If there is anything else you think would be helpful to share here, or if you have questions, feel free to email me at amber@neureka.ai.

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