Melanie Cole, MS: Welcome to Back to Health, your source
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Back to Health features conversations about trending health topics and medical
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I'm Melanie Cole. And joining me today is Dr. Matthew Robbins.
He's an Associate Professor of Neurology at Weill Cornell Medical College
Cornell University and an Associate Attending Neurologist at New York
Presbyterian Hospital Weill Cornell Medical Center. And he's here to talk to us
today about long COVID and headache disorders.

Dr. Robbins, it's a pleasure to have you join us. As we were
speaking a little off the air, I find headaches so interesting. And now, as
we're learning more and more about long COVID and the complications that that
is causing for so many people, I'd like you to put these two together for us.
How common are headaches as a symptom of long COVID?

Dr Matthew Robbins: Well, thanks Melanie, and I'm
delighted to be with you and to share this information with our conversation.
You know, headaches, even separate from COVID and long COVID, are such a common
symptom of some of the most common disorders that people experience worldwide.
Migraine is probably the most common headache condition that comes to medical
attention. And there are probably more than 40 million people in the United
States alone and 1 billion people in the world who experience migraine in any
given year.

So, already we're starting with this background of really
frequent and severe headache condition that is prevalent all over the world.
And then, you throw COVID into the mix where we've, of course, seen a lot of
neurological symptoms arise out of the consequences of having such an
infection. And then, it sort of amplifies the whole situation. So, we do know
that headache is one of the most common symptoms that people can experience
once the initial COVID infection sort of goes away. Long COVID is sort of
broadly defined as having symptoms that last at least two months, that start
sometime after having a COVID infection and something that really can't be
explained by something else. And headache is one of the top symptoms that we see
in long COVID.

But often when we see headache after COVID, it's often not by
itself. It's often with other symptoms too, such as dizziness, sleeping
problems, thinking problems or cognitive disorders, fatigue, even numbness and
tingling, and so on. So, that's one of the ways in which we could sometimes
distinguish between headache arising out of a COVID infection versus a headache
condition that happens on its own, such as with migraine, as in sort of the
company that it keeps in all these other symptoms that develop.

Melanie Cole, MS: Wow. That was so interesting and an
excellent explanation for this. So, here's a big question, Dr. Robbins, what is
a headache?

Dr Matthew Robbins: It's hard to take for granted that
very question, so that's really smart. Headache is a symptom. It's a symptom of
when there is pain or discomfort or some type of abnormal sensory experience
that is unpleasant in the head. The head includes the upper part of the neck,
the face, the eyes. So, it's very non-specific to location and it's very
important to know that headache, which is almost a universal symptom, there's
no one who doesn't experience headache of some sort in their life, is different
than sort of a condition where headache is the main event such as migraine, for
example.

You know, migraine is an inherited neurological condition,
where headache is the most common and often the most debilitating symptom. But
typically, there are many other symptoms such as sensory sensitivity, like
light and sound and smell sensitivity, things being worsened by movement,
nausea, sometimes other neurological symptoms. So, even how we conceptualize
headache alone is kind of misconstrued, and often leads to stigma against
patients because who hasn't experienced headache once in a while? I think from
some innocuous cause or having a sinus infection or having the flu or even
having COVID, which most of the time doesn't cause long-term problems.

But there are certain disorders that feature headache as a main
symptom, but they are conditions or even thought to be diseases on their own.
For example, migraine alone, you know, most people who have migraine have
migraine that's very occasional. They have attacks once in a while. Maybe there
are certain triggers, like something they thought was dietary or with sleep
deprivation or stress or relaxation after stress or something hormonal. But
then, there are people who have really tough chronic migraine where they're
having headache and other neurological symptoms almost 24/7, and it's like a
disease. So, even the spectrum of just a headache condition is so variable. And
because headache has been such a common symptom to arise after COVID as part of
long COVID in general, it sort of reinforces how little we know, but how much
more we need to appreciate about people who have headache conditions like
migraine or cluster headache or after a traumatic brain injury or concussion in
the more general sense.

Melanie Cole, MS: Well, headaches can be so
debilitating. I know that when I've had a few, you know, it's just something
you feel like you can't do anything else until that's solved. Now, the ones
that we're talking about for long COVID, are these mostly random, Dr. Robbins?
Or are there risk factors? Is there any prediction that this person who might
have been susceptible to migraines before or who might get headaches for
something easily before might be somebody that would suffer this as a
complication?

Dr Matthew Robbins: That is a very important question,
Melanie. I think we don't know entirely. We know sort of more broadly, and it
seems to be that the risk of developing long COVID, including neurological
symptoms like headache, is lower if you're vaccinated for COVID; if you are
eligible for an antiviral treatment like Paxlovid and you have taken it; if you
had COVID more recently with some type of omicron derivative rather than delta,
alpha, beta, or the very early variants that might have led to this to happen
more commonly.

That being said, there isn't a clear relationship with the
intensity or severity of the initial COVID infection and the long-term risk of
long COVID. I think what we have observed in our practices is that people who
have a history of, say, migraine or maybe a strong family history of migraine
may be more likely to develop headache arising from a COVID infection. And the
hypothesis, what we think might be the case, is that there's a genetic risk
that exists already. And then, you get this infection and then that sort of
activates this biology that was lurking beneath the surface all along. So, that
has to be borne out in future studies. But that is something that we've seen
from infections in the past. For example, the neurology world and many patient
advocacy organizations focus on this condition that's called new daily
persistent headache. It was something that was originally described by a
Canadian neurologist, Dr. Van Ness, in the 1980s. And back then, it was picked
up by places like the National Enquirer and other places that sensationalize it
in a way. But it was described in association with Epstein-Barr virus infection
where headache could arise after some infection. And often just like with this
new daily persistent headache or with long COVID and headache that can develop
thereafter, often the headache problem is way worse than the initial infection
ever was. So, we have a base of experience from this and those lessons we've
been applying to COVID.

Melanie Cole, MS: Dr. Robbins, you already said this at
the very beginning of this episode, but I'd like you to reiterate for patients,
how do they know that their headaches are a symptom of long COVID and not
something else? Can you just resay what you said at the beginning, putting that
together with dizziness or they've just had COVID? Kind of put it together
again for us.

Dr Matthew Robbins: Yeah, I think the clue is typically
if headache is very frequent or even continuous, sort of in the aftermath of
having a COVID infection. And often if it is linked with other symptoms that
may be neurological like fatigue, like having a sleep problem, maybe like
having generalized pain in muscles, like dizziness. So, it's likely linked in
this complex of symptoms. It's hard to know how specific that is to the virus
because people with migraine also have what doctors and scientists use this
term called comorbidity. If you have migraine, you are more likely to have
chronic fatigue or fibromyalgia or anxiety or a sleep disturbance. But we see
that very clearly more in the same timeframe where they all happen all at once
together in the setting of long COVID. So, that might be a clue. Of course, an
important thing to say to our audience is that a clinician, a physician, a
doctor, someone should also be helping to figure this out for our patients, of
course. But those are the general trends that we've noticed.

Melanie Cole, MS: Well, thank you for that. Now, what
about treatments? Are there any medically-based treatments that have been shown
to work? Are we just looking at Tylenol or Motrin? What has been shown not to
work and what have you guys found works pretty well?

Dr Matthew Robbins: Yeah, I think that is an important
question because we haven't found a treatment that's specific for long COVID
necessarily, especially for neurological symptoms. So, the way in which we
manage, say someone has very frequent headaches after a COVID infection, and we
say, "You may have long COVID," you know, if the headaches resemble
otherwise migraine with some of the symptoms that I've mentioned earlier with
nausea and vomiting and pain that might be more throbbing and changing in its
location on the head and worsened by movement and being sensitive to light and
noise and smell and so on, then we use migraine treatments to help treat this
post-COVID or long COVID headache condition, and often that's very successful.
And migraine, thankfully in our world, we have so many new treatments over the
last few years that have really exploded and have been very specific for
migraine and are very well tolerated. And the fact that they often work in the
situation suggests that in long COVID, migraine biology in the brain is being
activated and therefore gives us an opportunity to use our existing and newer
treatments for migraine that may work.

Melanie Cole, MS: What about home treatments? What would
you like patients, listeners to know if they are somebody who's suffering these
headaches and maybe they're just racking it up to headaches they've suffered
before or putting it to long COVID, maybe they've seen a doctor or not? What do
you like them to do at home? What are some tried and true things, methods that
can work to help relieve some of those headache?

Dr Matthew Robbins: The first thing I would like to
emphasize is that it should never really be done on their own. If someone is
really suffering with headache, we learn these lessons for migraine over many,
many decades, is that we are working on making sure primary care doctors are
well educated to treat headache problems, including migraine. There's obviously
many, many specialists in neurology. I, myself, am a headache specialist neurologist,
so I spent a year doing what's called a fellowship where I studied only
headache. And there are close to 800 of us across the country. So, it's very
important to try to see someone who might be able to help and never feel like
you have to be at home doing it alone.

There are non-prescription treatments that are useful. There
are certain over-the-counter supplements that have some evidence for migraine
that we often apply to long COVID, certain devices that are even
over-the-counter that are approved or cleared by the FDA for headache
conditions. Certainly different tools can be very helpful for some to do at
home to bring to their provider, keeping a diary, looking at triggers, seeing
if there's a relationship in women to their periods and so on. So, I think
often it's great when we see a very empowered patient who comes to us with
information that we can then use together to make people better.

Melanie Cole, MS: Well, I know I'm not alone when I say
that headaches can be scary. And when you get one, whether or not you get them
regularly or not, I mean, right away a lot of us go, "Oh, brain
tumor" or stroke, or something along those lines. I mean, I know I do.
Maybe I'm just a little bit out there that way, but I'm sure a lot of people do.
But I want to ask you, you recently represented Weill Cornell Medicine on
Capitol Hill, Dr. Robbins, would you tell us what that was about and what you
shared? That's pretty cool.

Dr Matthew Robbins: Yeah, absolutely. So, I have been a
participant for several years with this organization called the Alliance for
Headache Disorders Advocacy, which is a group of doctors and other clinicians
and patients and advocates who all together go to Capitol Hill and advocate for
our patients to just make their care better, to have more research
opportunities and to have more funding for people with headache disorders, to
have better services for those who are disabled from it, to be able to manage
their lives. So, we went this year, and I was also happy to represent the
American Headache Society, where I am on the board of directors and, of course,
Weill Cornell.

We had a few different asks. One, important was about
supporting long COVID headache research because it's such a prevalent problem.
And some of our discussion today underlied how little we know about it and how
there aren't really specific treatments for it. So, that was one of our asks,
to have more recognition, have more funding for research through the NIH and
the NINDS, which is the neurology wing of the NIH. And we had other asks too,
including trying to safeguard access to special education services for children
with migraine and other headache disorders, looking to see if we could even
create a caucus for congressional members who might be interested in helping us
more frequently and reliably. And then also, looking to expand on the support
that's already been given to veterans with headache because there is this
wonderful VA Centers of Excellence process and system that exists for our
veterans who have headache disorders, which could be related to their
deployment or just related to their medical illnesses, and to increase those
resources would be great. In years past, we also look to advocate for
underserved populations. So, it's really a wonderful organization. I feel very
empowered to go, including alongside some of my own patients who have very
tough headache disorders who've been empowered to advocate and stand alongside
us together to do so.

Melanie Cole, MS: What excellent work. Thank you so much
for all that kind of work. It really helps advance the situation. And as I said
before, it can be so debilitating. I'd like you to wrap it up, Dr. Robbins,
with your best advice. For people that suffer from headaches and suffer from
headaches that may be related to long COVID, what would you like them to know?

Dr Matthew Robbins: I'd like them to know that you can
be helped. And we have a lot of different treatments that will help people be
better, have a better quality of life. And there are a lot of general medical
care practitioners and specialists who are empowered to really help. And I've
seen so many patients get so much better when this situation has arised. And
we're really grateful that investment in science by the government through the
NIH has really led to new discoveries to treat many of our most common
neurological disorders like migraine that we can use in circumstances like
this. But we certainly need more ways to go.

Melanie Cole, MS: Thank you so much, Dr. Robbins, for
joining us today. What a fascinating topic this was. And Weill Cornell Medicine
continues to see our patients in person as well as through video visits. And
you can be confident of the safety of your appointments at Weill Cornell
Medicine.

That concludes today's episode of Back to Health. We'd like to
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