By now, most of us have been vaccinated and booster shots have begun. So let's do another update on COVID-19 vaccines and migraine.
Here's what you need to know:
- 6 months after your second vaccination, you will be eligible to get a booster shot. It is really important that you get this booster shot.
- At the moment, everyone is getting Pfizer for their booster shot - it doesn't matter what your first two shots were.
- Anyone 12 years+ can have their choice of Pfizer or Moderna vaccines for your first two shots. 18 years and over will have the choice of AstraZeneca, Pfizer or Moderna.
- In addition to the rare clotting condition, a number of cases of bad neurological side effects have been reported following the AstraZeneca vaccine including Guillain-Barre Syndrome (GBS). Migraine Australia strongly recommends against the AstraZeneca vaccine for people with migraine.
- Talk to your doctor about what is right for you.
- Migraine Australia continues to advise that people with migraine are at a significant risk of a poor outcome if they contract COVID-19, and are at a significantly higher risk of developing long COVID. Please get vaccinated.
Catch me up!
Migraine Australia has been tracking scientific reports from around the world on how people with migraine have fared with COVID-19. We included links to the research in our last update. Since then, more and more reports and papers have been published confirming that migraine and COVID-19 are a bad combination.
There are four main concerns in relation to migraine and COVID-19.
MIGRAINE HIDING COVID-19
Headache is the most common neurological symptom with an average of 20 per cent 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 occurrence 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
There are reports from around the world indicating people with migraine are having more attacks, even when controlling for the four most common migraine attack triggers of stress, lack of sleep, neck pain and anxiety. Increase in the frequency and severity of attacks was exacerbated by reduced access to healthcare services, including neurologist appointments and Botox treatments being cancelled.
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. Theories include that the COVID-19 virus is activating previously undiagnosed migraine, or worsening already diagnosed migraine, due to inflammatory processes or by upsetting the balance of chemicals around the brainstem.
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.
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 also significantly more prevalent in the migraine group.
MIGRAINE SYMPTOMS BEING CONFUSED WITH TTS SYMPTOMS
TTS is the blood clotting disorder associated with AstraZeneca. The main symptom people are told to look out for is a significant headache… which isn’t very useful for us. There are reports of people with TTS being treated for migraine and sent home with some really poor outcomes.
Way back in August we wrote to ATAGI outlining this research, making a strong argument that migraine should be included as an underlying condition of concern, people with migraine should be prioritised for vaccination, and that medical professionals should be appropriately advised of the challenges and risks of managing COVID-19 in the migraine population.
Unfortunately, ATAGI rejected all the evidence we sent them, denying there was a problem, and pointed out that their advice said migraine and cluster headache were ‘generally’ not included in the list of underlying medical conditions but doctors could make their own decisions.
We’re not sure why ATAGI wants to withhold important and relevant information about migraine and COVID-19 from both the public and doctors, but this is not an unusual thing when dealing with the high level of migraine stigma throughout the medical community and government officials.
We’ll keep fighting, and keep telling you what we know.
Join us for a COVID-19 and migraine live chat in the Migraine Australia Chat Group on November 25 at 7.30PM AEDT.
Are there any specific issues for people with migraine?
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.
Early on, the biggest concern most people have had with the COVID-19 vaccines was 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.
The research that COVID-19 may be worse for people with migraine is concerning. Even though the restrictions are lifting and borders are opening, please get vaccinated, stay at home when you can, wear masks and do anything else you can to avoid getting 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.
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. 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.
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.
So Pfizer or Moderna is better?
For people with migraine, it is arguable that the Pfizer and Moderna vaccines may be a safer bet to avoid triggering a migraine attack. And removing the concern about the side effects being caused by the AstraZeneca vaccine, even though they are rare, is great for managing our anxiety.
In addition to the blood clotting issue, Guillain-Barre Syndrome (GBS), a serious neurological condition with symptoms that are similar to complicated presentations of migraine, has been reported in a significant number of patients following vaccination with AstraZeneca. The TGA has added a warning to the patient information sheet about this. They are also investigating reports of demyelination, which is what happens in MS. These kinds of serious neurological issues are, of course, very concerning to anyone that already has a neurological condition, so it is best to have one of the other vaccines.
I don’t want to get any of the COVID-19 vaccines, is that ok?
Yes. 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.
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.
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 is a lot of chatter on social media about 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.