The use of COVID-19 vaccines have finally helped to provide a shield for society against COVID-19. Data shows that the available vaccines are effective in helping to prevent serious disease or hospitalisation from COVID-19. While the vaccines help protect us from COVID-19, it is important to remember that the vaccines do not provide a blanket guarantee that you will not contract the virus. Therefore, it is important to be mindful of public health advice.
We would encourage you to please register and get vaccinated as the more people who get vaccinated, the more we can protect people from being adversely affected by COVID-19.
COVID-19 vaccination has led to specific queries around their potential impact for people living with epilepsy and specific advice around vaccination. We have addressed the most common questions which have been put forward to us on this matter below.
Am I at higher risk of contracting COVID-19 due to having epilepsy?
There is currently no data to suggest that people with epilepsy are more at a higher risk of contracting the virus compared to the public. Through our membership of the International Bureau of Epilepsy COVID-19 taskforce, we are regularly in communication with experts and organisations around the globe about this question and will continue to monitor this.
If I do catch the virus, will I be more adversely affected due to having epilepsy?
Again, there is no data to suggest that you will be more adversely affected by the virus due to having epilepsy.
However, with that in mind, we have all heard now of personal testimonies of those who have contracted the virus and the varying ways they have been affected. Much like epilepsy, the virus’ presentation from person to person – and the impact it has on them – varies, so we must continue to do everything we can to ensure we are all following current public health guidelines.
It is also important to note that the virus could cause a fever which in turn can be a seizure trigger for people with epilepsy. Again, it is important that we do all we can to ensure that we do not contract the virus – even if vaccinated.
I have concerns about the vaccines and how quickly they were developed. Should I take them?
It is important to note that all vaccines currently approved for use in Ireland have been approved by the European Medicines Agency. This is the same body which approves all other medications that come into the country – including anti-epileptic drugs.
Vaccines for COVID-19 have gone through rigorous testing and peer review before they were approved. There were no short cuts taken compared to the normal clinical trial and regulatory process. Instead, the regulatory process was made more efficient in several ways, for example by running trials in parallel rather than sequentially; and by analysing data during the trials rather than waiting to the end. In addition, governments have provided huge levels of funding for Covid-19 vaccine development, minimising the risks for pharmaceutical companies, and enabling the process to proceed much faster than is normally the case.
As we are all widely aware, rare instances of blood clotting have been identified with the AstraZeneca vaccine and Janssen vaccine.
Post-marketing surveillance is a critical part of the process of ensuring that all new treatments are safe once they are in use in the general population. It is not unusual that potential safety markers, including exceptionally rare events are identified as part of this process. Ultimately, regulators such as the EMA and HPRA will take evidence-based decisions on concerns that may arise, taking into the account the risks and benefits associated with the vaccines and associated with contracting Covid-19.
Therefore, we would strongly encourage people with epilepsy and others to get the vaccine in order to protect ourselves and others from being adversely affected by the virus.
We would also encourage everyone to please get your information about the vaccines from reliable sources such as the HSE, HPRA, European Medicines Agency or international equivalents such as the UK’s MHRA or US FDA.
Will the vaccines interact with my existing Anti-Epileptic Drugs or CBD treatments?
There is no evidence to suggest that the vaccines will interfere with your current treatments or reduce their effectiveness.
With a number of vaccines available, is there a preferred option for people with epilepsy?
There is no evidence to suggest that one vaccine over another is preferred for people with epilepsy.
Are there general side effects that I should be aware of when it comes to receiving the vaccine and are there also specific side effects I should be aware of as a person with epilepsy?
The most common side effects are usually mild or moderate and improve quickly. These can include pain and swelling at the injection site, tiredness, headache, muscle and joint pain, chills and fever. These side effects are consistent with what would normally be observed following vaccination because of the immune system’s response to the vaccine. There have been some reports that side effects are more common following the second dose.
The Health Product Regulatory Authority – the body responsible for medicines regulation in Ireland will routinely issue safety reports on the vaccines. You can find these reports by visiting the HPRA website.
While there are no side-effects being reported specific to people with epilepsy, it is important to note that fever is a potential side effect that could trigger a seizure for some people with epilepsy. Antipyretics, i.e. medicines that help regulate temperature; for example, paracetamol, taken regularly for 48 hours after the vaccination (or for the duration of fever) will help minimise this risk.
Is there any specific advice around vaccination for people with epilepsy?
The advice would be the same as with any other vaccine. Have plenty of rest before and after the vaccine and plan your day around your vaccine so you’re not rushing and overly stressed.
It is also important to stay hydrated both before and after the vaccine. Finally, as noted the vaccine can cause a fever in some people. For some people with epilepsy, this could trigger a seizure so it is recommended that a person with epilepsy take 2 paracetamol after vaccination and every 6 hours (while awake) for up to 48 hours after vaccination unless contra indicated for any other health reason - if you have any concerns in relation to this you should talk to your GP.
Before you receive a COVID-19 vaccine, make sure to let your vaccination provider know that you have epilepsy and your particular seizure type(s), as well as any other important medical information, such as:
- Allergies, especially an allergy to any ingredient in the vaccine
- Allergic reactions to prior vaccines (e.g. flu vaccine)
- Current or recent fever or infection
- All medications you are taking, especially medications that suppress the immune system (e.g. immunomodulatory or immunosuppressive medicines) or anticoagulants. It may be beneficial to take a list of these with you
- If you are pregnant or nursing, or plan to become pregnant
As with any vaccine, you should not receive the COVID-19 vaccine if you are allergic to any of its ingredients. You should not receive a second dose if you had an allergic reaction to the first dose.
If I have well-controlled epilepsy and have a seizure after being vaccinated, would the seizure be classed a 'provoked' seizure?
A provoked seizure is a seizure which has a known cause and is unlikely to be repeated. Should the advice given above (rest, fluids & paracetamol) be followed it is unlikely that a person with controlled epilepsy will have a seizure. In the unlikely event that a seizure does occur, an argument could be made that the seizure was provoked. However, you will need to consult with your neurologist on this. The decision on whether a seizure can be classified as provoked is individualised and at the discretion of your treating clinician.
Has there been any research regarding the outcomes of vaccination on people with epilepsy?
A study featured in leading epilepsy medical journal, Epilepsia, monitored the outcomes of vaccination in people with epilepsy. It reported that there was no evidence for worsening seizure control post-vaccination. You can read that study in full by visiting the 'News' section of our website.
How do I register for a vaccine/booster vaccine?
You can register for a vaccine by visiting the HSE website. At this link, you will find further info on the different options available to get vaccinated and read further information on each of the vaccines currently in use.
When fully vaccinated, does that mean I can get back to normal?
As noted throughout this piece, being full vaccinated does not mean that you cannot contract or pass on the virus. The vaccines provides greater protection against being adversely affected by COVID-19 so it is important to continue to be mindful of public health advice.
Watch our video with Prof. Norman Delanty....
At the beginning of the vaccination programme rollout (Feb 2021), we spoke with Prof. Norman Delanty – consultant neurologist at Beaumont about some of the key questions being put forward at that stage by people with epilepsy and their families. You can watch this video below….