My experience with CVI and migraines

Dagbjört Andrésdóttir, an international CVI advocate and classical singer, shared her personal experience living with CVI and migraines, how she manages this chronic condition, and the everyday strategies she uses to empower her through the day.

Migraines are a popular topic in our CVI community, where adults with CVI and parents of children with CVI report migraines and headaches as a consistent part of their lives. These migraines can be caused by any type of overload to the brain—for example, visual fatigue, hunger, overexertion, overheating or too cold, and overstimulation. This is a big chronic health issue for some with CVI.

This conversation focuses on personal and anecdotal experiences. The presenters are not medical providers and do not give medical advice, but Dagbört speaks about strategies, medications, and tools that work for her. We do hope conversations like this can help inform needed research in our field.

Below are excerpts from Dagbjört’s honest and powerful presentation.

Dagbjört’s experience: “I have to be honest about my lived experience. [Migraines] can be scary for anyone. They are scary for me, sometimes.”

I got diagnosed with migraines shortly after they started occurring at age 16. At that time, I, obviously, didn’t know about CVI and knew nothing about how it works. But I constantly started getting these horrible attacks of extreme head pain, light and noise sensitivity, nausea, and dizziness. When I started learning about CVI, I connected many of my attacks to visual fatigue and/or overstimulation.

I am diagnosed with two types of migraines—basilar migraines, which means my biggest trigger is my menstrual cycle, and vestibular, which means mostly without headache—notice this, without headache—but with extreme dizziness and nausea instead.

It’s very important to know that a migraine can occur without a headache. Headache is just one of a million migraine symptoms. My migraines started as episodic, meaning I got a couple of attacks a month—in my case the whole time on my period—but developed into chronic a few years later, meaning 15+ migraine attacks a month.

As I learned more about CVI over time—I’m still learning—I saw a huge connection between my attacks and visual fatigue. That’s why we need to include migraine as a possible side effect of CVI, because CVI is a lot more than a visual impairment.

We need to include migraine as a possible side effect of CVI, because CVI is a lot more than a visual impairment.
–Dagbjört Andrésdóttir

What triggers a migraine?

Each attack is different in level of pain, symptoms, and triggers. My main triggers are my menstrual cycle, visual fatigue, stress, anxiety, hunger or thirst, overall fatigue, noise, too bright lights, and artificial sweeteners. Even crying can be a big trigger.

Increased stress and anxiety can be a vicious cycle sometimes. If I expect or know that an attack will come soon, I get really anxious. And then, because of the anxiety, the attack will get worse. So physical and mental health go hand in hand.

A huge, huge trigger for my migraines is crying, even just tearing up a little bit. So if I’m overly stressed, I might start crying, which always induces a migraine. The stress doesn’t have to be because of anything. It might be my head telling me something that isn’t true. It might be stress because of having to go outside—understandable when it comes to CVI—going to school or work, meeting others… countless reasons.

Triggers are also very common to be included in what we eat, for example, processed meat, dairy, gluten, too little or too much caffeine, artificial colors or sweeteners, and much, much more.

As I said, every attack is different, just like everyone with CVI is different.

What does it feel like? What happens to your vision?

In my case, an attack usually starts with a dull pain behind my eyes or around that area, somewhat like if someone is trying to push or pull my eyes out. If I don’t take a preventative medicine the exact second I start to feel numb, I’ll be out for the day at least.

But often, even taking meds doesn’t help. It depends on how the attack develops. In the worst cases, I get an unbelievable pain in one side of my head, sometimes even “ice pick.” I describe them like someone is stabbing a knife into your head over and over again.

A chart that shows the stages of a migraine over time, from Prodome, then Aura, then Migraine Attack, then Postdrome. Postdrome section is highlighted. — Image from migrainebuddy.com

I might have to vomit, although in my case, that doesn’t happen very often. In those cases, I might have to be in bed for a day or two. This kind of pain for me is indescribable. Although most of my attacks aren’t that violent anymore, I wouldn’t say that any attack is milder. I always get numbness, tingling, fatigue, pain, nausea, and dizziness. If I’m lucky and I’m able to take my meds right away and lie down for about 15 to 30 minutes in a completely dark room, that should take care of most of it. But that’s a lottery win if that happens.

Mostly, it takes a couple of days or more to completely subside. But then another attack comes. So if I weren’t taking preventative meds, I would have migraines almost daily.

As for my vision, during an attack, my visual field always shrinks a lot. In a worst-case scenario, I get completely blind for a few hours or even days. It can take some time for the vision to switch back on. But it does when the attack subsides. Then it switches back to my standard visual field of 6 degrees—120 is a standard one. It does not mean that everything turns black, but everything stops making sense visually.

It does not mean that everything turns black, but everything stops making sense visually.
–Dagbjört Andrésdóttir

How do you recover and what helps you manage the pain?

From the time I was diagnosed at age 16, I literally tried everything imaginable to manage. But nothing ever worked well enough. For a long time, doctors were not even taking me seriously, saying that it was just sciatic, or I should just go for a walk, et cetera. I had tried everything, from paracetamol to an injection med.

In 2022, I was fortunate enough to find a doctor that actually listened. That’s when I started doing Botox injections. Those have changed my life around. No, it’s definitely not a cure. And the injections are super painful. But I do them over an attack any day. Before Botox, I had 15 to 20 plus migraine days a month. Now, I have 3 to 8 plus.

They have a bunch of specific migraine meds that only work on migraine, no other types of pain. Some are specifically made for youngsters. I have an emergency pill I take when I feel an attack coming on.

If and when I get an attack that my meds can’t beat, I have a few nonmedicinal ways of helping, including:

My ice hat or sleep mask. It lasts for about a couple of hours, unlike normal ice packs that last for like 15 minutes.
Noise-canceling headphones. These are a lifesaver. They help with noise sensitivity. They calm me down, so I’m able to more effectively get sleep.
Kool and Soothe gel patches. You can glue them onto your forehead or onto the back of your head or whatever where you need it. You get a cooling effect from them and they don’t need refrigeration.
Migraine stick, essential oil roll-on. Strong smells can be a trigger for some, so I don’t recommend using this if it is. But if it’s not, you could take this out and roll it onto your forehead, your temples, or your neck. And so you have this pepperminty smell that should relieve nausea.
DripDrop, an electrolyte powder that you mix into water for the migraine hangover phase when you need energy.

In addition to this and my routine preventative meds, I try to stay as much in a very dark room. After the attack subsides, the so-called migraine hangover occurs. That’s when the pain has lessened, but you still feel awful, like being hungover, but without the alcohol. In these periods, the only thing that works is sleep, sleep, and more sleep. I try to drink a lot of fluids in these cases also.

How do you help prevent your migraines from occurring?

I have a few preventative medications that I take every evening. One is to help with sleeping. Another is a muscle relaxer. I also take seizure meds and anxiety meds. My emergency pills are for when I feel an attack coming. I drink a small glass of regular Coke with it. Coke Zero has artificial sweeteners, so Zero is out of the picture here. Caffeinated drinks sometimes do help with migraines as long as you don’t drink too much—Too much caffeine will induce a migraine.

Other than this, I must absolutely not get hungry or thirsty. So I have to eat and drink regularly. In my case, I eat or drink more often, but less at a time. Big meals aren’t my thing usually.

Also, not always with success, I have to keep my stress and anxiety levels as low as possible. That’s when relaxing music and noise-canceling headphones are an absolute lifesaver.

Then, of course, sleep, not too little, not too much. I usually need eight or nine hours, sometimes a little more. If I sleep too much, I can get an attack during the day or wake up with a migraine, also if too little sleep. It’s always a very fine line.

Migraine remedies on the go

There are also some items that I use on the go. This is sometimes called a migraine kit. And you can customize your own according to what helps most. In addition to phone—which is always on dark mode—wallet and keys, there are some things I never leave the house without. Some, I only add if I know the day will be stressful, hard, or long:

Emergency pills
Migraine glasses. I never take them off, ever, except for sleeping, ever, ever, ever. (Ask your ophthalmologist and optician about the possibility of adding an FL 41 tint to a prescription lens, or find non-prescription lenses. They also come in different gradients.)
An emergency card. It says, “Urgent medical notice, I’m having a migraine.” So if you lose consciousness or pass out, the people around you will know, ‘OK, she’s having a migraine. So we will need to call a doctor.’ It also lists the main symptoms.
Water bottle
Migraine stick with essential oil roll-on
Can of Coke
A snack, maybe a protein bar, some nuts, a fruit, or whatever you like. I like salty snacks after a difficult attack to boost your body salts, like potato chips, fries, crackers, or nuts.
Electrolytes like DripDrop or Gatorade
Cooling patches
Sleeping mask
Noise-canceling headphones
A hat, if outside is sunny. Sometimes I bring regular sunglasses, even though most of the time, the migraine glasses will do the trick.
Peppermint gum or hard candy to help with nausea

What are some strategies you use to empower yourself?

I use my music and CVI advocacy work, as well as fun times with family and friends. I’m just a normal person who has something that is considered a disease or condition. I’m not the migraine. I’m not the CVI. I constantly have to remind myself of that.

I’m just a normal person who has something that is considered a disease or condition. I’m not the migraine. I’m not the CVI.
–Dagbjört Andrésdóttir

Rachel Bennett: That your whole identity is not the CVI. It’s not the migraine.

Dagbjört: Exactly.

Rachel: And so doing things that you love—music, advocacy, spending time with family and friends. I love that. That’s a good reminder for us parents, too, about our kids.

What helps you reduce your visual fatigue and fatigue in general throughout the day?

Dagbjört: Well, pretty much the same that helps keep migraines at bay—watch my sleep schedule, eat and drink regularly, try to keep stress and anxiety low—I manage to do so very seldomly—listen to calm music when home after the day, take my meds, and try to always have something to look forward to, however small it is. It can only be to watch a good show tomorrow or have a nice snack or meal. Keep in mind, though, that things that we find fun and interesting and we want to do, can also be tiring.