It is important to note that epilepsy is a condition that has been around for thousands of years and we are still learning about it. In that context, remember that COVID-19 has only been around for a few months so we are in the very early stages regarding our understanding of the virus.
However, in this section, we have noted the most common questions which people with epilepsy and their families have put to us through our Community Resource Officers. If there is questions that you don't see on the list, please feel feel to get in touch with your local Community Resource Officer and we will do our utmost to address them. Alternatively, you can also contact your Epilepsy Nurse Specialist if your query is of a specific medical nature. See the list of questions below:
1) I have epilepsy. Am I more prone to the condition? & My child has epilepsy. Are they more prone to the condition?
There is no known evidence that anyone with epilepsy is more prone to contracting the virus or if contracted, that the virus is more severe in people with epilepsy. However, for many people with epilepsy, the development of a fever can lead to increased risk of a seizure (fever is a common sympton of Coronavirus). This is because the body is trying to fight off the infection and therefore reduces your seizure threshold.
Therefore,it is important that you apply the preventative measures that are being issued by the HSE & the Department of Health in terms of maintaining social distancing, washing your hands regularly, coughing or sneezing into your elbow. More on preventative measures here.
2) Will there be an impact on the supply of epilepy medication?
At the moment, the HPRA are reporting no known supply issues on epilepsy drugs as a result of COVID19. They have also noted that they do not expect any supply issues owing to COVID19. We will closely monitor this matter and update our channels if there are any supply issues. We have an expanded article on this matter here.
3) My prescription is due to be renewed for my epilepsy medications and my consultant’s appointment has been rescheduled until later in the year? What do I do now to continue getting my meds?
The Minister for Health has signed an act allowing for the electronic transfer of prescriptions to a pharmacy via an approved electronic system; i.e, the HSE's healthmail system. You can get your prescription from your GP or epilepsy service. In addition, the maximum period of validity of a prescription has increased from 6 months to 9 months as of the date specified on the prescription so you should not be without your medication Furthermore, pharmacists now have discretion in supplying an emergency supply of medication should you have ran out and your prescription has expired. For further reading on the changes implemented here, click here.
4) Are epilepsy drugs immunosuppressant?
There are many different anti epileptic drugs (AEDs) which work using different mechanisms and which may be prescribed singly or in combination with each other and alongside other medications. It is our understanding that most standard anti-epileptic drugs which are commonly and widely prescribed are not generally classified as immunosuppressant, or considered to significantly increase an individuals' risk of contracting infections. If you continue to have concerns in this regard, please contact your medical team however, we would encourage everyone to continue taking their AED’s as normal.
5) What if I have to self – isolate?
If you have regular seizures, particularly tonic-clonic, or any that could cause harm, it would be advisable to always inform family, or carers that you are self-isolating so that you can be checked on. You should also ensure you have all your medication prescriptions in supply and up to date. Make sure to have your phone to hand, along with a charger and if possible arrange for calls to a family member/ carer/ friend at pre-arranged intervals e.g. on the hour. In addition to this, you may have seen that An Garda Síochána have recently received a supply of new vehicles for community response for people who may be particularly vulnerable. These vehicles, amongst other duties, may be deployed to collect medical prescriptions or take people to hospital appointments. You will need to contact your local Garda Station in order to inquire about this. The details of your local Garda station can be found here.
Related to the above and also owing to COVID19 in general, we are receiving increased queries regarding seizure alarms & monitors. If you need advise on the best alarm for you, please contact our National Information Officer or see Pg 18 of our Safety & Seizures booklet here.
6) Are Epilepsy Ireland still available?
Of course! See detais of our local Community Resource Officers here.
7) I’m developing symptoms of COVID19 – what do I do?
If you believe you are developing symptoms, your first port of call is to contact your GP. Drink plenty of fluids and take 1 gram of paracetamol (two 500mg tablets) every 6 hours to reduce fever to avoid the chance of a breakthrough seizure.
8) Is it safe to go to A&E if I have a prolonged seizure?
If your seizure is prolonged and you do not have access to emergency medication an ambulance should be called. If you are experiencing an increase in your regular seizures or a different seizure type you should contact your epilepsy team in the normal way.
9) Are the HSE Epilepsy Nurse Specialists available at the moment?
Yes and they are ecouraging you to get in touch if you have any seizure related concerns. You can find details of Epilepsy Nurse specialists here. See also - tips for preparing for virtual appointments here.
10) Is there a risk for people with epilepsy wearing masks if they have a seizure?
Recommendations are now being made in many countries about wearing face coverings. Although not mandatory in Ireland, face coverings are becoming more common. The US Center for Disease Control and Prevention (CDC) recommends that ‘cloth face coverings should not be placed on young children younger than 2 years of age, anyone who has trouble breathing, or is unconscious, incapacitated or otherwise unable to remove the cover without assistance’. It has been clarified that the CDC recommendations do not apply when someone is incapacitated or unconscious for a short time period, such as during or after a seizure. Therefore, face masks or coverings are not contraindicated in people with epilepsy. However, should a convulsive seizure occur it is advised that someone (e.g. a family member) removes the mask with caution to ensure optimal airway function. You can see more advice and protocol regarding the use of a face covering here.
11) Is emergency administration of buccal medication considered an aerosol procedure?
Many people with epilepsy are prescribed emergency rescue buccal medication to be administered if a seizure lasts more than a specified period of time; for example, 5 minutes. Buccal Midazolam is a solution placed between the gum and cheek using a syringe. In most circumstances this is expelled in a controlled fashion and does not spray so it is not considered an aerosol procedure. It is recommended (if possible) that those administering buccal midazolam in these times should wear gloves, an apron and face mask when administering the medication. Remember to wash hands thoroughly following administration. Note that we are continuing to provide online demonstrations on the administration of buccal midazolam for both parents & carers and allied health professionals - more on that here.
12) I have heard that people with respiratory problems associated with COVID19 have been recommended to lie prone (on their stomach) to improve air entry to the lungs – what do we recommend for people with epilepsy who develop COVID19?
Recent evidence has suggested improved breathing in people with COVID19 when placed on their front (prone position). This has caused some concern for some people with epilepsy as sleeping in a prone position has previously been associated with Sudden Unexplained death in Epilepsy (SUDEP). For this reason, advice has been given not to sleep in the prone position. The use of anti-suffocation pillows has also been advocated.
People with both epilepsy and serious breathing difficulty due to COVID-19 are likely to be hospitalised, where medical professionals can provide guidance on sleeping position, as well as ongoing supervision. In a non-hospital environment, a risk/benefit analysis has to be taken into account. Therefore, advice is likely to depend on the severity of the COVID19 disease, the type and severity of epilepsy and other considerations. You should seek advice from your own medical professional before adjusting your sleeping position at home.
13) I’m pregnant – am I at greater risk of contracting the virus & is there any further steps I should be taking to reduce risk of contracting the virus and to manage my epilepsy?
As yet, there is no evidence that pregnant women who get this infection are more at risk of serious complications than any other healthy individuals.If you experience any symptoms of COVID contact your GP and self isolate at home. You should attend all of your hospital appointments as normal unless you are told otherwise.
14)If I do contract the virus, does that mean my baby will be born with COVID?
As this is a very new virus we are just beginning to learn about it. Emerging evidence suggests that transmission from a woman to her baby during pregnancy or birth (vertical transmission) is probable. There has been a report of two cases in which this seems likely, but reassuringly the babies were both discharged from hospital and are well. In all previously reported cases worldwide, infection was found at least 30 hours after birth. It is important to emphasise that in all reported cases of newborn babies developing coronavirus very soon after birth, the baby was well.
Given current evidence, it is considered unlikely that if you have the virus it would cause problems with your baby’s development, and none have been observed.
15) Do you have any further tips for managing my epilepsy during this period?
Further tips on preparing for virtual appointments and best practices with your epilpesy in general are available here; notes on managing mental health and stress are here; video resources on Epilepsy & Coronavirus are available here wheil additional resources which you may find of assistance are available here.
We will to continue to update this article if/when any further information becomes available and re-share on social media. Again, please follow the advice which is coming from official channels – the HSE & Department of Health.
In relation to COVID19 & Epilepsy, there are currently a number of surveys that have been commissioned seeking to better establish the experiences, needs & requirements of people with epilepsy and their families during this pandemic. We would appreciate if you could take the time to complete these as every response is vital in learning more about what this virus means for people with epilepsy. Two ongoing surveys on this matter can be found HERE & HERE.