The United Kingdom has become the first country to approve and authorize delivery of a COVID-19 mRNA vaccine, developed by Pfizer and partner BioNTech. The companies have signed an agreement to supply 40 million doses to the UK. This is an exciting scientific achievement and will help the global community in fighting the global pandemic.
Living Well With Epilepsy readers are concerned about how the COVID-19 vaccine will affect people with epilepsy. We’ve put together a few answers to some frequently asked questions here to help ease your mind a bit.
People with epilepsy and access to the COVID-19 vaccine
Epilepsy Action asked MHRA about the risk of a COVID-19 vaccine interacting with any medicines, including epilepsy medicines, and the NGO was told the risk is very low.
People with epilepsy and an increased risk from coronavirus
A recent study published in the British Medical Journal suggests that people with epilepsy could have a slightly increased risk of being admitted to hospital or dying from coronavirus. It’s important to note that the study does not show whether epilepsy itself causes this increased risk, or whether the risk is linked to other factors that could affect people with epilepsy.
As such, it is important to keep yourself safe by following guidance on social distancing, washing your hands and wearing a face mask if you are able to.
If I catch coronavirus could it trigger a seizure?
Some people with epilepsy are more likely to have a seizure when they are feeling sick. This is particularly true when if people with epilepsy have an illness with a high temperature or a fever. Since fever is a symptom of coronavirus, it stands to reason this spike in temperature could trigger seizures for some people with epilepsy.
For most people with epilepsy, a seizure is not a medical emergency and does not need hospital treatment. However, if you are at risk of status epilepticus, make sure you have an up-to-date emergency care plan from your epilepsy specialist.
People with epilepsy confront fear daily. We are brutally aware of Sudden Unexpected Death from Epilepsy (SUDEP) that takes lives every year. The pain of losing an individual can be exacerbated when a rare condition is not diagnosed quick. Comedian and actor, Bob Dibuono, witnessed this pain first hand with the death of his father to another seizure-related condition. He talked with me about his experience caring for his Dad until the end and his thoughts on his Father’s condition of New-Onset Refractory Status Epilepticus (NORSE).
The sudden onset
Bob’s Dad was a healthy individual who played golf for exercise and leisure, sticking to his diet. In fact, he had been playing golf the day he became ill. His Dad came home from the golf course feeling disoriented. The seizures started by the time they reached the hospital that evening. The next eight weeks were spent running multiple lab tests, x-rays, and scans.
According to the family, communication was not ideal between hospital staff and the family; however, they did work together trying to come up with a possible reason his Dad was presenting with multiple seizures. All tests came back negative which left doctors perplexed about the situation. They used heavy steroid dosages to control swelling which helped his Dad recover enough to be awake. During this time, he was also on seizure medications to control the Status Epilepticus. Soon, the steroids were scaled back per protocol and the seizures returned in full force. Bob saw his Dad lose his adaptive daily skills, but remained hopeful for an answer, driving to the hospital each day. He was able to make his Dad smile, even in the end. His Dad was admitted to the hospital on October 3rd, 2019 and passed away on December 24, 2019.
New-Onset Refractory Status Epilepticus (NORSE)
It is hard to cope with the death of a family member, then throw in a cause that is not defined but is simply an explanation. New-Onset Refractory Status Epilepticus (NORSE) is that rare condition presenting in approximately 3,000 people per year in the United States. The prolonged seizures that occur with NORSE stem from a variety of issues including infections, strokes, metabolic, or idiopathic. The symptoms can be seen within 24-72 hours of presentation with many individuals making a recovery. Those who recover sometimes need lifelong needed supports (National Organization for Rare Disorders, 2020).
Others do not get their second chance, leaving the mortality rate of NORSE at about 30%. This means around a thousand people will die this year with no firm diagnosis, but a set of symptoms and small explanation. This leaves the family left behind wondering if there was something that could have been done differently? Could medical treatment have been different? Were there signs they missed?
A Clinical Description
According to NORD, New-onset refractory status epilepticus (NORSE) is defined as a condition, not a specific diagnosis, with new onset of refractory status epilepticus without a clear acute or active structural, toxic or metabolic cause in a patient without active epilepsy. Status epilepticus (SE) is a condition of prolonged seizure activity or repeated seizures without full recovery in between. Status epilepticus that persists despite at least two standard anti-seizure medications is termed refractory status epilepticus (RSE). Most of the common causes of RSE can be identified within 24-72 hours of presentation.
Febrile infection-related epilepsy syndrome (FIRES) is a subcategory of NORSE that requires a prior febrile infection starting between 2 weeks and 24 hours prior to onset of refractory status epilepticus, with or without fever at onset of status epilepticus.
In up to half of the cases of NORSE, a possible or probable cause is ultimately found, most often autoimmune or paraneoplastic encephalitis, with infectious causes less common. In the remaining half or more, no cause is identified despite an extensive work-up.
Timing is important
The “diagnosis” of NORSE for his Dad did not come until postmortem. Bob realized that communication between family and healthcare professionals is crucial. Seizures are scary and that first 24 hours seem to be pivotal for a neurology unit to get in for the evaluation. That is the one regret he has is not getting his Dad to the neurology clinic sooner (B. Dibuono, personal communication, November 2020).
Our epilepsy shows us the fragility of human life. We do not know when our time will come when our souls will be released from the physical body. It is our job to live life being happy, doing what is right by us. Take the time to express love in all forms of communication to each other. It is our responsibility to educate on seizure safety but not dwell on the “what ifs” in life. Bob has been my friend for thirteen years. I have seen him grow as a comedian, supporting him all the way. His father is with him, proud of the man he has become on this Earth. Keep making us laugh Bob. We need it.
Now you can take the survey yourself and use it as a discussion guide before your next neurologist, or epileptologist appointment. We’ve provided links to the survey in english and spanish. This is a wonderful tool to prepare for your next doctor’s visit.
A couple of years and a few hundred seizures later I realized that I needed a system to help track seizures and to help me understand them. It felt there wasn’t as much research, apps or support as it is now within this community. I was certain once I found a way to log my seizures and triggers it would be easier to maintain. I was sure tracking this information would help prevent a lot of them from happening moving forward. I’m an old school kinda girl, so I still use pen and paper to take notes and journal. I also use a paper planner because it is easier to reference it than it seems digitally. Understanding how important it is to track seizures allows me to share health experiences with my physicians and family members.
1. Keep a Seizure Diary
Whether you decide on a journal or an app to keep track of your seizures, just the action of recording this information can help. You may even find better ways to negotiate the ups and downs of your daily life. It is helpful not only to record the information, but to also look back at the journal / app and use the information to help inform your decisions. The information you gather can be useful when making decisions about the meds you are taking, to meds you’ve changed, or even determining when treatment doesn’t seem to help eliminate the seizures.
These apps are self-management tools for seizures and epilepsy. They focuses on self-monitoring and tracking seizures and other symptoms.
Journaling is another great way to keep track seizures as well. It’s just as accessible as your apps and for some it’s easier to manage and maintain the information. I have kept a seizure journal since 2008. It isn’t as extensive as I would have liked it to be nor does it have ALL of the necessary information because I would forget to update it [memory issues due to seizures]. However, It is helpful to look at how far I’ve come in this journey.
3. Organized Health Info
Keeping up with all your health information can be a challenge. Using an app or a paper journal can help eliminate the anxiety of having to remember or keep track of random papers you need when you visit the physicians. Having the information all in one place makes it super easy for me to recall my seizures and other health experiences when I go to the doctor.
It is also helpful to monitor the change of your medications and test results over time. Because I have kept really good records of my seizures and the medications I was on, I was able to reduce my medications when my husband and I planned to have a baby. The information was impactful to the level of care and concern my team of doctors had during my pregnancy.
4. Track Your Triggers
Each of us have different situations, things, foods, temperature, movements etc. that can trigger a seizure. Some you may be able to identify these triggers automatically, while others may take a little more time to discover. I didn’t realize many of my triggers until almost 2 years into this journey. Initially, I wasn’t writing down my seizures or my daily activities, so I couldn’t keep track of things the way I should. Once I began writing down what I thought could have caused my seizure it became easier to eliminate certain behaviors and foods from my lifestyle to decrease the number of seizures I experienced.
These are just a few tips on how to keep track of your seizures. I hope this helps as you move through your own epilepsy journey. Please share some of your own tips and suggestions below!