The main questions you’ve been asking us about coronavirus – and the answers we’ve been giving
By: Gemma Jolly, Information and Support Services Manager
The last week has seen a huge change in our way of life.
We are all working hard to adapt as best we can – whether that’s working from home, not going outside, video-conferencing for the first time, home-schooling our children, or supporting others in our communities.
The unfolding events have also made us even more aware and appreciative of the fantastic work those in the NHS, public services and other key services (including our local shops and supermarkets) are doing.
We know that lots of people affected by migraine are being particularly impacted by the current situation, and it is really unsettling and worrying. We want to reassure everyone that we are working hard to keep our information and advocacy services open, and are trying our best to answer your questions. You can give us a call on Tuesday or Thursday, 10am-4pm, on 0203 9510 150, or you can ask us questions at any time using the online contact form.
We have been receiving an increasing number of questions relating to coronavirus and migraine, and I thought it would be helpful to share some of the questions we are getting – and the answers we’re giving. The most important thing to remember is that you are not alone, many people are feeling the same as you are.
As migraine is a neurological condition, does it mean people with migraine are in the ‘at risk’ group for coronavirus?
This is a difficult one for many people with migraine because people with chronic neurological conditions are identified as ‘high-risk’, and it is not always clear if that applies to people with migraine.
Generally, although migraine is a neurological condition it doesn’t cause an increased susceptibility to infections, unlike other neurological conditions, so people with migraine (in itself) wouldn’t be considered ‘high-risk’. However, whether or not someone is considered ‘at risk’ will depend on your individual situation. If you are considered ‘high-risk’ the NHS will contact you by 29 March 2020, and are asking people not to contact their GP or healthcare team at this stage.
I take ibuprofen for my migraine, should I continue to take it?
There have been lots of reports around ibuprofen and lots of people have contacted us to ask if they should take it. The current NHS advice is:
There is currently no strong evidence that non-steroidal anti-inflammatories (NSAIDs) such as ibuprofen can make coronavirus (COVID-19) worse. But until we have more information, take paracetamol to treat the symptoms of coronavirus, unless your doctor has told you paracetamol is not suitable for you. If you have no coronavirus symptoms and regularly take ibuprofen for pain relief, carry on taking it as usual. If you develop coronavirus symptoms, ask your doctor about changing to paracetamol instead.
I take candesartan and am worried about whether I should still take it?
We know many people with migraine use candesartan as a migraine preventive, and there has been reports of candesartan causing complications with coronavirus. It can be very worrying to think you may have to give up a successful migraine treatment, especially if you have taken a while to find one that works.
The current NHS advice on candesartan is:
If you have coronavirus, or think you might have it, keep taking your blood pressure medicines as usual. There is no clear evidence that taking angiotensin receptor blockers (ARBs) like candesartan will cause complications.
If you have any concerns about your medication please speak to your GP, specialist or a pharmacist.
I am on preventive treatment for my migraine, should I continue to take it?
People are also contacting us who are worried about whether they should continue to take their preventive medication, and what this will mean for their migraine.
Preventive treatment is a lifeline for many people with migraine, and the thought of having to give it up can be hugely worrying and unsettling. At the moment, as far as we know, there is no evidence that people need to stop their preventive medication such as amitriptyline, propranolol and topiramate. However, if you are worried about your medication you should speak to your GP or specialist.
For people who take Naproxen as a preventive treatment they may be worried about taking it because it is a non-steroidal anti-inflammatory (NSAID). The current guidance is that if you don’t have coronavirus symptoms you should continue to take it as usual. If you do develop coronavirus symptoms you should speak to your doctor about changing medication.
I take triptans and am unsure whether I should continue to take them with coronavirus?
Many people take triptans to help them manage their migraine, and it is understandable to be worried that you may have to stop taking them. As far as we know, currently, there is no reason people need to stop taking triptans in relation to coronavirus, and people should continue to use them unless advised not to by their GP or specialist.
I am on a CGRP drug – how will coronavirus impact this?
Some people who are on the new CGRP drug treatments (such as erenumab and fremanezumab) are worried about whether they are immunosuppressants and therefore if they need to stop taking them because it will increase their risk of coronavirus. From the clinical trials and use in practice these drug treatments do not compromise people’s immune system and people should continue to take them unless advised otherwise by their specialist.
Will I still be able to get my medication?
If you need medication and have regular prescriptions it is a very unsettling time. You may be worried about whether you have enough medication or whether there will be a shortage of medication. Healthcare professionals and others, including GPs and pharmacists, are working really hard to make sure people have access to their medication, although it may need to be picked up in a different way. If you have questions about your medication you can check your local GP or pharmacy website.
You may also be able to request a larger supply of medication to limit trips out to the pharmacy or your doctor’s practice.
My Botox appointment or Greater Occipital Nerve (GON) block appointment has been cancelled, what can I do?
We have been contacted by people who have had their Botox appointments or Greater Occipital Nerve (GON) block appointments postponed or cancelled. Understandably, many people are worried about the impact and what it will mean in terms of how they will be able to manage their migraine. It can be hugely unsettling, especially if other treatments haven’t worked.
If your appointment is cancelled or postponed, you should ask for information about what other options are available to help you manage your migraine until you can have your treatment again. Your specialist may suggest other treatments, such as acute medication like triptans, to help if you get an attack. You may also find hot or cold packs helpful together with rest in a quiet place until the attack subsides. Keeping well hydrated and maintaining regular sleep, meals and activity can also help to minimise attacks.
You can also ask about other preventive treatment options, depending on how long you have to wait for another appointment and whether you have failed these previously.
If you have an upcoming appointment or are worried about your appointment being cancelled you should contact your clinic and ask them for an update. Although please do bear in mind that NHS services are currently very busy and are likely to only be contacting people with appointments in the next few days or weeks. If your appointment is not for a few months it may be best to wait until nearer the time before contacting them.
Stress triggers my migraine and I am feeling very worried about coronavirus – what can I do?
It is a very stressful time at the moment, and many people are worried about how the current situation will impact their migraine. You might like to look at the blog we wrote last week which provides some tips to help people manage their migraine in the current situation. It’s important to look after yourself and try to manage any stress and triggers as best you can. This may be engaging in relaxing activities such as breathing exercises, going for a walk, yoga or colouring. You should also make sure you’re sticking to routines as best you can, trying to manage your sleep and eating well.
These are just a few of the questions we are currently receiving. We know that there are many other questions you may have. If you have any questions about migraine and coronavirus please contact us either via our telephone lines (Tuesdays and Thursdays 10am-4pm) on 0203 9510 150 or any time using the online contact form.
We want to reassure you that we are here to provide as much support as we can during this challenging time. And you can still continue to contact us with any other migraine-related questions as well.
Please stay safe, look after yourself, and try to be kind to yourself and others.
27th March 2020