I was first diagnosed with epilepsy almost one year ago at age 49. I quite literally thought I was having a stroke so I went to the Emergency Room. After the ER visit I was referred to a neurologist for follow up. In the meantime, I researched my symptoms and suspected I had epilepsy.
I also discovered I have a rare condition called Todd’s Paralysis or Todd’s Paresis, which causes weakness on the side I have my seizures. Now, after a few months, medication controls my seizures but not the weakness I experience throughout the day. It is incredibly debilitating and is a huge struggle in my daily life.
Even if I’m just cooking or actively moving around my house doing chores I will experience weakness. At times the weakness is so bad that I’m forced to sit down and rest until it subsides, which is usually one hour. Then I’ll go through it all over again shortly thereafter. Others notice, especially when I am out in public and l appear drunk, stumbling, and uncoordinated. But the really hard part is the exhaustion that comes with the weakness and seizures.
What is Todd’s Paralysis?
Todd’s paralysis, also referred to as Todd’s paresis, Todd’s palsy, or postictal paresis. According to the National Institute of Neurological Disorders and Stroke, Todd’s paralysis is a neurological condition experienced by individuals with epilepsy, in which a seizure is followed by a brief period of temporary paralysis. The paralysis may be partial or complete but usually occurs on just one side of the body.
The paralysis can last from half an hour to 36 hours, with an average of 15 hours, at which point it resolves completely. Todd’s paralysis may also affect speech and vision. Scientists don’t know what causes Todd’s paralysis. Current theories propose biological processes in the brain that involve a slow down in either the energy output of neurons or in the motor centers of the brain. It is important to distinguish Todd’s paralysis from a stroke, which it can resemble, because a stroke requires completely different treatment.
I try to remain positive and tough through my daily struggles but honestly, the fatigue gets in the way of my ability to do most physically normal activities that I am used to. I am also 15 years widowed and raising a young son by myself. Usually the strong one among my family and friends, I now am the one who needs to maintain a less stressful life — as stress, sleep, and dehydration are all major triggers of mine. Thank you for letting me share my story.
Kathryn A. Davis, MD, MSTR, Assistant Professor of Neurology at the University of Pennsylvania and member of the ILAE NBC recently had the opportunity to connect with Sanjay Sisodiya, MRCP, PhD, on the topic of climate change and the impact it is having on epilepsy.
Dr. Sanjay Sisodiya is Professor of Neurology at UCL Queen Square Institute of Neurology and Honorary Consultant Neurologist at the National Hospital for Neurology and Neurosurgery and the Epilepsy Society. Dr. Sisodiya studied medicine at the University of Cambridge and Guy’s Hospital, and trained in Neurology in Oxford and at the National Hospital for Neurology and Neurosurgery. He was awarded a PhD for working in brain magnetic resonance imaging in epilepsy.
Dr. Sisodiya’s main interests are in epilepsy, especially difficult-to-treat epilepsy, epilepsy genetics and treatment-response genetics, which are also his key research interests. He runs a specialist service for the evaluation and management of epilepsy in adults.
Climate change is the biggest challenge facing humanity today. The associated global warming and humidification, increases in the severity and frequency of extreme climate events, extension of the ranges of vector‐borne diseases, and the consequent social and economic stresses and disruption will have major negative consequences on many aspects of health care.
We have asked Dr. Sisodiya to answer questions regarding a hot topic in epilepsy: Will climate change impact people with epilepsy?
ILAE Neurobiology Commission: Dr. Sisodiya, how will climate change impact people’s lives and healthcare? What is the evidence?
Dr. Sanjay Sisodiya: In science and clinical practice, we are always looking for the best evidence for what we do. The evidence base for the climate emergency we face is amongst the strongest in any field of science: over 11,000 scientists were signatories to a document warning of the challenge we face (https://doi.org/10.1093/biosci/biz088). People’s lives will undoubtedly be affected. Whilst scientists are careful not to blame individual climate events (e.g. such as the current bushfires in Australia) on climate change, the frequency and severity of such events, and of a global warming of the climate, and are due to climate change. There is concern that healthcare will also be greatly affected, and efforts are being made to address this concern (e.g. The 2019 report of The Lancet Countdown on health and climate change: ensuring that the health of a child born today is not defined by a changing climate. Watts N, et al. Lancet. 2019 Nov 16;394(10211):1836-1878).
NBC: Will there be specific impacts to people living with epilepsy?
SS: It is important to appreciate that there are separate points here. Climate change will affect people’s lives across many aspects, and all over the world – and people with epilepsy will be affected as will everyone. We all contribute to climate change through our daily lives, to a greater or lesser extent, and in this sense, we all have a role to play, whether through trying to reduce our own carbon emissions at the personal level, or through trying to promote change in our workplaces, by our employers, or even our governments. Moreover, some people with epilepsy may have less resilience or fewer resources to meet the new and added challenges that climate change will throw up. Finally, it is possible that climate change will specifically affect people with epilepsy, for example by making seizures more likely as global temperatures rise, or through increasing levels of personal stress – but these are areas for which currently we do not have much evidence and that need more research. But we must remember that absence of evidence is not evidence of absence!
NBC: What can people living with epilepsy and their caregivers do to lessen the impacts?
SS: We can all try to do what we can. The size of the challenge is great. Action at international collaborative and national governmental levels is likely to be essential, but we can all also take steps ourselves. There are simple ways to work out your own carbon footprint, for example: https://footprint.wwf.org.uk/#/ or https://offset.climateneutralnow.org/footprintcalc. You can then see what you might to do reduce your own footprint. For example, for many people, flying is a major contributor to their carbon footprint at an individual level. As always, people with epilepsy should not take action that might compromise their own healthcare.
NBC: What can epilepsy providers do to lessen the impacts?
SS: There are many things – again flying is probably a major area for attention. We discuss this in more detail in our article in Epilepsia Open.
NBC: What are the unanswered questions regarding the impact of climate change on epilepsy? What advances can we expect in the next 5-10 years?
SS: We need to work out what the consequences of climate change will be specifically on epilepsy. We need to do the research that will provide answers to questions such as whether and which aspects of climate change might generate the biggest new risks for people with epilepsy, or are most likely to increase the frequency or intensity of seizures, what the effects of climate change-related stress might be, or whether rising temperatures and other effects of climate change might pose risks to the storage and distribution of treatments used in epilepsy. There are lots of areas to look at. A group of concerned doctors and scientists have banded together to promote work in this area: we are called EpilepsyClimateChange. Time is of the urgency, so we hope to have answers within the next few years.
Living Well With Epilepsy has partnered with the International League Against Epilepsy (ILAE) to bring you a series on Hot Neurobiology Topics in Epilepsy. This initiative is led by the ILAE Neurobiology Commission (NBC), which is chaired by Aristea Galanopoulou, MD, PhD (USA). Dr. Galanopoulou, Professor of Neurology and Professor of Neuroscience, Albert Einstein College of Medicine, works towards promoting neurobiology research in epilepsy through advocacy, education, training, proposals of optimal methodologies and infrastructure improvements. The NBC organizes activities aimed at informing the progress and best practices in neurobiology of epilepsy research, including symposia, workshops and reports.
I’m 36 now and had my first seizure when I was 23 in my sleep. Why? Who knows. There’s still no clear answer about anything.
VNS and RNS
I have the VNS and the RNS and the seizures still overpower both of these gadgets. I am learning to live with these but my seizures are still uncontrolled and have a mind of their own. Just when I think I’m doing good for a week…BAM… I have another seizure.
What is VNS?
According to LivaNova, the company that provides the VNS Therapy System, VNS is delivered through a device that sends mild pulses to the vagus nerve at regular intervals throughout the day in an effort to prevent seizures. The hope is that an additional dose of therapy may stop or shorten your seizure, decrease its intensity and improve your recovery. VNS Therapy includes a short outpatient procedure which takes about an hour. VNS Therapy does not involve brain surgery.
What is RNS?
According to NeuroPace, Inc., the company that provides the RNS® System, The RNS® System consists of a small, implantable neurostimulator connected to leads (tiny wires) that are placed in up to two seizure onset areas. It comes with a simple remote monitor that you use at home to wirelessly collect information from the neurostimulator and then transfer it to the Patient Data Management System (PDMS). Your doctor can log into the PDMS at any time to review accurate, ongoing information about your seizure activity and treatment progress. This helps your doctor learn more about your seizures and improve your care.
The RNS® System involves a surgical procedure that is performed by a trained neurosurgeon. Prior to the procedure, your medical team conducts diagnostic testing to identify the location in your brain where your seizures start. During the procedure, your surgeon positions the leads at the seizure source and places the neurostimulator in your skull. Once implanted, the device is hidden under your scalp—unnoticeable to you and others. Most patients go home the next day. The RNS System is a reversible treatment that does not involve removing any brain tissue.
Then my mom is in my face in the middle of the night crying over me like it’s my first one. I still can’t help but apologize to her every single time I have one.
Taking a positive approach
All the meds I’ve tried — and all the surgeries — and my seizures are still not controlled. But it could be worse, right? I had some pretty bad thoughts but out of all this I was blessed with a beautiful daughter. She has been my strength because honestly if it weren’t for her, I would’ve given up a long time ago.
I was diagnosed with epilepsy in 2013, at the age of 24. I work in New York City and went out at lunchtime – and had a seizure on the sidewalk. Some good Samaritan (I still don’t know who it was) called the ambulance and notified my job.
I have juvenile myoclonic epilepsy and experience tonic clonic seizures. I have had myoclonic jerks my whole life and never suspected anything, but my neurologist said I get them more than the average person.
Unfortunately, I don’t experience an aura, but people around me can sense something is off. My husband can spot it so easily.
In August 2013, my parents found me on the dining room floor. After my diagnosis, I managed to last two years seizure-free and finally began to drive again.
Then, I had another seizure October 2016. I also had a seizure a month before my wedding after getting out of driving my car. In NYC, the epilepsy driving law is you must be a year seizure-free. In the beginning, this was so frustrating. Now, I have no desire to drive. Luckily, I work in NYC and can rely on mass transit.
One benefit to that episode was I finally decided to speak out about my epilepsy. Last year (with the help of my amazing sister) I planned a “Seize the Night” Zumbathon at our gym and raised over $2,700 dollars. The proceeds of this fundraiser were donated to the Epilepsy Foundation. Thank you to everyone who participated!
I then went eleven months seizure-free free until May 2019. Since then I’ve had two stays in the Neuro ICU within four months. Wish me luck!