UPDATE 1/7/2021: ATAGI changed their advice that Pfizer is now the preferred vaccination for all people under 60, increased from 50. This document has been altered to reflect that change. Our advice remains unchanged, please get your vaccine. If you are likely to be triggered by the ingredients in the vaccine, discuss with your doctor whether you should ask for the other one.
You may have heard the announcement that the Government has changed guidelines on the COVID-19 vaccines. Here’s what you need to know:
- The new advice from ATAGI, which is the body of immunogology experts who give advice to the government on serious health issues, is that Pfizer vaccine is preferred over AstraZeneca for people under 60 because of the risk of a very rare blood clotting condition.
- Immunisation providers should only give the AstraZeneca vaccine to people under 60 where benefit outweighs the risk.
- Those who have already had their first dose of the AstraZeneca vaccine and had no serious side effects are safe to have their second dose as scheduled.
- People over 60 will continue to get the AstraZeneca vaccine. The risk for people over 60 is much lower.
- New systems and information materials are being developed to make sure people have given informed consent before getting their vaccine.
- There is no concern about the Pfizer vaccine. Only the AstraZeneca vaccine has been linked to the blood clotting issue.
- Talk to your doctor about what is right for you.
What’s the issue?
The AstraZeneca vaccine has been associated with a very rare type of blood clotting issue the government is calling “thrombosis with thrombocytopenia” or TTS. It is also being called "vaccine induced prothrombotic immune thrombocytopenia" or VIPIT. Thrombosis means clotting and thrombocytopenia means a low blood platelet count. In most cases it has presented as cerebral venous sinus thrombosis or CVST, which are blood clots in the brain, but the clotting can happen in all areas of the body.
This is a very rare condition, affecting 4-6 people per million vaccinated, but it is very serious. Around 25% of those who have developed this rare disorder after receiving the AstraZeneca vaccine have died.
Agencies in Europe have been investigating and came to the position that it was not safe for younger people to be vaccinated with the AstraZeneca vaccine, and that the rare blood clotting disorder should be listed as a possible side effect.
So far, most of the cases reported have occurred in women under 60 years of age within 2 weeks of vaccination. Based on the currently available evidence, specific risk factors have not been confirmed, but there is no indication that migraine is a risk factor.
ATAGI put out advice earlier warning about the risk that was being investigated, and advising that people with a history of blood clotting conditions should delay having their vaccine until the research is completed. They have now very carefully considered the latest vaccination findings out of Europe and the UK and they have determined that the Pfizer vaccine is preferred for people under 60.
They have also developed new systems for informed consent to ensure people fully understand the risks of the vaccine they get.
Is there any specific issue for people with migraine?
The short answer is no.
The biggest concern most people have had with the COVID-19 vaccines is concern that the vaccine may trigger a migraine attack, or that their CGRP biologic medication may interfere with the vaccine (or vice versa). Both of those issues have been looked at and we are reliably assured by specialists that there is no specific issue or concern with the vaccines for people with migraine including those on new CGRP preventative medications Aimovig, Emgality and Ajovy.
Additionally, there is no evidence that this rare blood clotting disorder affects people living with migraine more than anyone else. People with migraine with aura do have a higher risk of stroke generally, so any blood clotting issues are naturally a concern for our community, but there are no reports of any link to migraine.
However, the AstraZeneca vaccine does have a lot of ingredients – called excipients or non-active ingredients - in it that may be triggers for some people with migraine. They are histidine, histidine hydrochloride monohydrate, sodium chloride, magnesium chloride hexahydrate, disodium edetate (EDTA), sucrose, ethanol absolute and polysorbate 80. So you may have a migraine attack triggered by this vaccine if you are normally triggered by histamines, magnesium, sugar, alcohol or sorbates, but this is not a cause for concern.
The Pfizer vaccine has very few ingredients of concern by comparison and thus is less likely to trigger a migraine attack. The inactive ingredients in the Pfizer vaccine are potassium chloride, monobasic potassium, phosphate, sodium chloride, dibasic sodium phosphate dihydrate, and sucrose, as well as small amounts of lipids. Unless you are triggered by potassium or sugar, it’s unlikely the Pfizer vaccine will trigger an attack.
Neither vaccine contains any of the common allergens or migraine triggers such as latex, milk, lactose, gluten, egg, maize/corn, or peanuts. Queensland Health have produced a great explainer on what’s in a vaccine if you’d like to know more.
The other concern we have is the symptoms of CVST are commonly severe and persistent headache and other neurological symptoms like blurred vision. That’s not very helpful for people who live with severe and persistent headache and other neurological symptoms all the time. There is a concern that people with migraine who develop this rare blood clotting disorder may not present to emergency because they won’t be able to tell the difference from their usual symptoms.
So Pfizer is better?
For people with migraine, it is arguable that the Pfizer vaccine may be a safer bet to avoid triggering a migraine attack. And removing the concern about this rare clotting disorder being caused by the AstraZeneca vaccine, even though it is extremely rare, is great for managing our anxiety.
Migraine Australia met with the Chief Nursing Officer Professor Alison McMillan, before the new ATAGI advice was released, to find out how people living with migraine might be able to choose which vaccine they receive, particularly for those who know that one of the ingredients will trigger a significant attack. She was very generous with her time and appreciated the concerns of people living with migraine around potential triggers and our stroke risk.
As the vast majority of us will now be given the Pfizer vaccine we no longer need to work towards the goal of getting that choice, which is great. You may still get other side effects from the Pfizer vaccine which is completely normal.
Because the Pfizer vaccine has been rolled out in much greater quantities in the US and Israel in particular there is a great deal more data available. One notable update is that the Pfizer vaccine is not only safe for all people over 16, it is safe for women who are pregnant as well.
I’m over 60 and I don’t want the AstraZeneca vaccine. What are my choices?
We are hopeful that the Government will eventually allow people to choose, but for the moment you will just need to wait. Talk to your doctor to discuss your concerns and read information from good sources before making a decision.
If you choose not to get the AstraZeneca vaccine, the Novavax vaccine is expected to become available around September, and Pfizer whould be available for anyone who wants it from around October. The Government has ordered 51m doses of the Novavax vaccine. However, supply of both the Novavax and Pfizer vaccines is dependent on availability from overseas. We expect there will be many more announcements about timing and other vaccines in the coming weeks.
As migraine is not on the list of comorbidities that puts people into the 1B category, and the rollout has been significantly slowed by this change in policy, it is unlikely most of the migraine community will get vaccinated much earlier than September anyway.
I'm under 60 and I just want to get vaccinated. Can I get the AstraZeneca vaccine?
Yes, you can, you can get it now and probably without much delay from your normal GP. However, you do need to understand it is not recommended, and you need to have a good chat with your GP about the risks. In particular you should discuss your personal stroke risk as a person who lives with migraine, and how to tell the difference between your normal migraine symptoms and the symptoms of CVST.
If I have the AstraZeneca vaccine, what symptoms should I be on the lookout for?
As noted above, severe and persisting headache and other neurological symptoms such as blurred vision may be your normal migraine experience, therefore they are not that helpful in signalling the alarm there may be something else wrong. As always, seek medical advice if your migraine symptoms are different to your normal attack.
Here are some other symptoms that may be experienced if you have developed this very rare clotting disorder. If you get any of these within the first two weeks after your first AstraZeneca dose, please go to emergency.
- shortness of breath
- chest pain
- swelling in your leg
- persistent abdominal (belly) pain
- tiny blood spots under the skin beyond the site of injection, or bruising easily.
If you have your normal migraine symptoms but they are just more severe, or perhaps the headache comes on very suddenly without any prodrome, please go to emergency. CVST is very dangerous so it is better to get checked out.
Once more than a fortnight has passed since you had your vaccination you should be fine.
I’ve already had my first shot of AstraZeneca, what should I do?
If you have already had your first shot of AstraZeneca and did not have a bad reaction to it, you are fine to get your second shot at 12 weeks as scheduled.
All of the reported cases of this rare blood clotting disorder happened within two weeks of the first dose.
I don’t want to get any of the COVID-19 vaccines, is that ok?
Yep. We live with migraine, all kinds of crazy things make us sick in ways that are so hard to explain or understand unless you’ve been there. No one in our wonderful community is ever going to judge you for not wanting to put something into your body. That said, it is really, really important for people with migraine to get vaccinated.
We need to do a lot more research into the links between COVID-19 and migraine, and have asked the Government to make funding available for this. We have seen some early studies looking at comorbidities and commonalities such as the role of serotonin and inflammation in both migraine and COVID-19. The neurological presentation of COVID looks and sounds pretty much exactly like some subtypes of migraine, with persistent and untreatable headaches, brain fog, numbness and fatigue heading the list of symptoms. One theory is that the COVID-19 virus is activating previously undiagnosed migraine, as happens with other diseases and post-traumatic headache, or worsening already diagnosed migraine.
Additionally, Long COVID, where the symptoms persist for months, is also a very scary prospect for people like us that are already chronically ill.
So please do get vaccinated.
Where do I get more information?
It is really important that you get reliable information from official and trusted sources. There will be a lot of chatter on social media in the coming days from whether or not the vaccines are dangerous through to outright conspiracy theories. Try not to be swayed by any of it – and please don’t reshare it. Talk to your doctor about your personal situation, and only read official and trusted sources such as the following websites:
- The Department of Health site or any of the State health sites:
- The ABC’s Coronavirus hub
- Guardian Australia’s coronavirus hub
- There is information available in more than 60 languages from the SBS Coronavirus hub. Some official information is available in languages other than English from the Department of Health.
There will be a special Facebook live in the Migraine Australia Chat Group on Saturday April 10 at 7pm AEST to discuss this news where you can ask any questions you like and we’ll do our best to answer them.