There have been a number of changes in the vaccine rollout and obviously, the Delta variant has changed the game a bit - because of this, we’ve decided to do a major update on COVID-19 vaccines and migraine. A number of things in this advice have been updated, please read it carefully.
Minor update September 3: we've added that the Therapeutic Goods Administration (TGA) has so far received 89 reports mentioning Guillain-Barre Syndrome (GBS), a serious neurological condition, following vaccination with AstraZeneca and they have added a warning to the patient information sheet. They are also investigating reports of demyelination, which is what happens in MS.
Here’s what you need to know:
- ATAGI’s advice has been changing regularly in line with new vaccines becoming available, and Pfizer being approved for use in adolescent children, as well as the increased risk from the Delta variant of COVID-19.
- Migraine Australia has written to ATAGI asking that they stop excluding migraine from the definition of chronic neurological conditions in their advice.
- There is an increasing body of evidence from around the world that people with migraine are at greater risk of poor outcomes if they contract COVID-19. In particular, the experience of Long Covid is worse for people with migraine.
- As a result of these increased risks it is really important that people living with migraine get vaccinated.
- Migraine Australia believes that vaccine providers should only give the AstraZeneca vaccine to any person living with migraine when their risks of COVID-19, and the blood clotting issue called TTS, have been thoroughly investigated and discussed, and there is no opportunity for an alternative vaccine. Pfizer or Moderna are preferred.
- 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.
- There is no concern about the Pfizer or Moderna vaccines in relation to the blood clotting issue. Only the AstraZeneca vaccine (and the Johnson & Johnson vaccine that is not available here) have been found to cause TTS.
- Our advice that Pfizer is less likely to trigger a severe migraine attack than AstraZeneca remains unchanged. Moderna is very similar to Pfizer with an added ingredient of acids, but is also less likely to trigger a severe migraine episode than the AstraZeneca vaccine.
- Talk to your doctor about what is right for you.
RK and Jacqui held a Facebook Live in the Migraine Australia Chat Group on Sunday August 15, 2021 for a Facebook Live to discuss this updated advice and answer questions. Watch the video here
What’s the new research on COVID-19 and migraine?
There has been some clinical research and a number of case reports published around the world related to migraine and COVID-19. These all indicate that, despite early assurances that we were at no greater risk, migraine is a concerning underlying condition when it comes to the management of COVID-19. Migraine Australia has written to ATAGI (the advisory panel of specialists that gives advice to the federal government on vaccines) this week outlining some of the below research. We have asked them to stop excluding migraine from the definition of chronic neurological conditions in their advice. We have also asked them to consider providing specific advice on migraine to make it clear what the risks are, and give clearer guidance on vaccination decisions for people with migraine, their carers and their doctors.
Migraine hiding COVID-19
Headache is the most common neurological symptom with an average of 20.1% of people with COVID-19 reporting it as a symptom. Migraine-like symptoms, including pulsating pain, higher pain intensity, photophobia (light sensitivity), phonophobia (noise sensitivity), nausea, and aggravation of migraine-like symptoms with exercise, are frequently reported by COVID-19 patients. Importantly, migraine-like symptoms were associated with more severe COVID-19.
These findings are in line with case study reports of people with Migraine reporting severe Migraine attacks prior to COVID-19 diagnosis. Given the occurence of migraine-like symptoms which are associated with the onset and severity of COVID-19 infection, there is a strong possibility that people with migraine may confuse severe COVID-19 neurological symptoms with their normal migraine attacks. Some researchers have argued that people with migraine are at increased risk of COVID-19 due to common comorbidities.
Migraine masking COVID-19 symptoms is of considerable concern because it may delay you being diagnosed with COVID-19 and, in turn, you may get much sicker if you do get COVID-19. Also, missed diagnosis of COVID-19 in people with migraine may lead to increased community transmission.
Migraine being worsened by COVID-19
A team led by Sydney based migraine researcher Fairadoon Haghdoost analysed Migraine Buddy data from around the world and found an increase in the frequency of migraine attacks throughout the pandemic, even when controlling for the four most common migraine attack triggers of stress, lack of sleep, neck pain and anxiety. This is in line with another study which found that in comparison to the pre-pandemic period, with 60% or more of respondents reporting an increase in migraine frequency and severity. Increase in the frequency and severity of attacks was exacerbated by reduced access to healthcare services, including neurologist appointments and Botox treatments.
The neurological presentation of COVID-19 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. It may be that inflammatory processes caused by COVID-19 may increase the frequency of migraine attacks, probably through an activation of the trigeminovascular system.
Long Covid being masked or complicated by Migraine
‘Long Covid’ refers to the long term symptoms of COVID-19 after the infection has passed. Neurological symptoms of Long Covid are common, with a persistent headache being a frequent symptom. Migraine Australia has long been worried about the neurological presentation of Long Covid, with some researchers hypothesising it may be underlying migraine activated by the virus, and others hypothesise it is a dysfunction of the brainstem, similar to the involvement of brainstem dysfunction in chronic migraine. Due to this, Migraine Australia is not surprised that worsening migraine or migraine becoming chronic is found to be part of the Long Covid presentation. A case-control study on the association of pre-existing migraine in patients hospitalised or recovered from COVID-19 and post-COVID-19 symptoms and found the number of post-COVID symptoms in the migraine group was significantly greater. Fatigue was significantly more prevalent in the migraine group.
Migraine symptoms being confused with TTS symptoms
You may recall that our advice from April of this year focused strongly on this point. The advice to be on the lookout for a severe headache that is unresponsive to treatment is of little use to people who experience those symptoms on any given day. You can see that advice below. People living with Migraine who have had the AstraZeneca vaccine may have trouble being able to tell the difference between their usual migraine attack and a case of TTS.
The deeply held stigma against Migraine as being a condition of concern also results in doctors dismissing the concerns of migraine patients, and potentially missing a TTS reaction. A case report of a 30 year old female, was described as being ‘otherwise healthy’, despite having a diagnosis of migraine. The patient developed thrombocytopenia (confirmed by blood test) after being administered the AstraZeneca vaccine. Acute migraine medication improved her headache symptoms and she was discharged from hospital... and, unsurprisingly, she was then was readmitted to hospital in a poor condition two days later. This case shows that the stigma around Migraine as ‘just a headache’, rather than a complex genetic neurological disorder associated with increased risk of vascular dysfunction, including stroke, was likely ignored when she first sought medical help. Further, this case highlights that migraine attack symptoms can mask the diagnosis of TTS symptoms from both patients and doctors.
Making this more worrisome are the reports that NSW Health has started cancelling Botox treatment appointments in some Sydney hospitals. We have contacted NSW Health, who advise that it would be a local resourcing decision rather than policy. Their response did not reassure us that they understand the consequences of cancelling these appointments that must happen at regular intervals. The delay of Botox treatments has resulted in significant increase in frequency and severity of reported headache days. The combination of Botox treatments being cancelled (causing an increase in severe headache) and the excessive encouragement of the AstraZeneca vaccine in greater Sydney (with the main symptom of TTS being a severe headache) is putting an alarming number of people living with migraine at a risk level that we consider unacceptable.
Remind me again - what’s the blood clotting issue (TTS)?
The AstraZeneca vaccine has been associated with a very rare type of blood clotting issue called “thrombosis with thrombocytopenia” or TTS for short. 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 four to six 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.
So far in Australia, as of 12 August 2021, there have been 104 cases (59 confirmed, 45 probable) of TTS from approximately 7.4 million vaccine doses. Seven Australians have died from complications related to receiving the AstraZeneca vaccine.
ATAGI originally put out advice 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 very carefully considered the latest vaccination findings out of Europe and the UK and determined that the Pfizer vaccine is preferred for people under 50. They then lifted that to 60 following a number of deaths. With the large Delta outbreak in Sydney, they further revised their advice to say anyone over 18 in the greater Sydney area should consider getting the AstraZeneca vaccine.
In addition to the TTS issue, very rare and challenging neurological conditions such as Guillain-Barre Syndrome being associated with the AstraZeneca vaccination. The TGA has so far received 89 reports mentioning Guillain-Barre Syndrome and it has been added to the patient information sheet. There are also reports of demyelination (what happens in MS) which are being investigated.
This revision of advice is normal as the situation changes. The Delta variant is challenging for all of us, and each of us need to make the right choice on vaccination that is safe for your particular situation while adequately protecting you from the risk of contracting COVID-19. The best way to make that decision is in consultation with your doctor.
Is there any specific issue for people with migraine?
Our previous advice was no, there was no specific issue in relation to TTS for people with migraine. Unfortunately, the answer is now yes.
The deep and entrenched stigma against migraine has resulted in people with migraine not being diagnosed with either COVID-19 or TTS adequately or early enough. There are now multiple case studies in the literature of significant adverse events, including stroke, that was initially treated as migraine.
Previously, 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.
There is no evidence that this rare blood clotting disorder affects people living with migraine more than anyone else, the problem we are now aware of, as we feared, is migraine masking the symptoms of COVID-19 and TTS, and people with migraine not getting appropriate care. Additionally, we fear migraine isn't being reported as an underlying condition when it should be. Migraine with Aura has long been recognised as a stroke risk and it is now being recognised as an underlying issue for TTS adverse reactions, but we do not have good data as yet as to how much the risk is increased.
The other concern we have is the symptoms of TTS 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 it apart from their usual symptoms.
The newer research that COVID-19 may be worse for people with migraine is concerning. We need more research to be sure, but in the meantime, we are better off playing it safe and getting vaccinated, staying at home, wearing masks and doing anything else we can to not get COVID-19.
What about the risk of the vaccine triggering severe migraine?
Our advice on this remains unchanged. The AstraZeneca vaccine has 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.
The Moderna vaccine is very similar to the Pfizer vaccine, the inactive ingredients are lipids, tromethamine, tromethamine hydrochloride, acetic acid, sodium acetate and sucrose. So it is similar to the Pfizer vaccine which also has lipids, salts and sugar, but Moderna also has Acids and Acid stabilisers.
Additionally, research from Italy has found that headache and migraine reactions are more likely with the AstraZeneca vaccine.
None of the vaccines contain 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 explanation on what’s in a vaccine if you’d like to know more.
So Pfizer is better?
For people with migraine, it is arguable that the Pfizer vaccine may be a safer bet than AstraZeneca to avoid triggering a migraine attack, and from all reports Moderna looks ok too. Of the three available vaccines, Pfizer has the lowest rate of headache as a side effect. 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, so get vaccinated - but get vaccinated with Pfizer or Moderna if you can.
Moderna has been around in the US since the beginning, so all the advice on whether the vaccine was safe for people on CGRPs or Botox from our American colleagues already had considered Moderna. No concerns there.
You may still get side effects like injection site reactions and cold and flu like symptoms from the Pfizer or Moderna vaccine which is completely normal, but they are less likely to trigger a bad migraine, and there is no known risk of TTS.
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.
In our last update we expected that the Novavax vaccine was to become available around September, and Pfizer would be available for anyone who wants it from around October. The only real change there is that Novavax has been delayed, but we have Moderna instead, expected to be available from September. This is great for people with migraine as we know the Moderna and Pfizer vaccines are safer for us, whereas we still don’t know a lot about Novavax.
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 get it now and probably without much delay from your normal GP. In Sydney there are walk in clinics where anyone can get AstraZeneca. 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 TTS. If your doctor advises you that they do not want you to get AstraZeneca, please listen to them.
If I have the AstraZeneca vaccine, what symptoms should I be on the lookout for?
As noted above, severe and persistent 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. TTS 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. In Sydney and other outbreak areas you may want to bring that second shot forward a few weeks, but talk to your doctor about that.
All of the reported cases of this rare blood clotting disorder happened within two weeks of the first dose. If you are past that two week mark you should be fine.
I don’t want to get any of the COVID-19 vaccines, is that ok?
Yep. We live with migraine, all kinds of things make us sick in ways that is 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.
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 in particular Is it TRUE? COVID-19 vaccines – Is it true? | Australian Government Department of Health
- 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.
- NCIRS – Vaccine FAQ’s COVID-19 vaccines: Frequently asked questions | NCIRS
- Academy of science – Vaccine basics 2. What is in a vaccine? | Australian Academy of Science