Migraine is a neurological disease with many symptoms, only one of which is headache

I know, when you hear about someone having a migraine attack, you think they’re just having a bad headache. Maybe you’ve had one yourself and you know how bad they can be. Before I was diagnosed, I hardly ever had headaches in my life - in fact, when I was diagnosed with migraine, I didn’t have headaches at all!

My first experience with this disease started with dizziness and vertigo. I felt lightheaded, woozy, dizzy, and I had weird sensations like I was slipping, moving up and down or side to side, or spinning. I was nauseated, sensitive to light and sounds, and would experience numbness and weakness in my body. My symptoms were constant, but sometimes got markedly worse.

I was lucky to be diagnosed with vestibular migraine very early, only after a few months of symptoms. I was SO confused - how could it be migraine if I don’t even have headaches? Turns out that migraine is a complex neurological disease affecting many different parts of the brain and body, and headache is just one of the possible symptoms (but yes, it’s a very common one).

A year after I was diagnosed with vestibular migraine, I had my first migraine related headache. Now, about ten years later, I have headaches almost every day. I also started getting a rare type of attack called hemiplegic migraine, with symptoms that look and feel like a stroke (without permanent brain damage).

Symptoms of migraine

• Migraine with aura
  This is the most common type of migraine, and usually what people think of when they hear the word. Symptoms usually start with aura - sensory disturbances that warn an attack is coming. Aura is usually visual and most people see a blind spot in their vision, zig zag lights, or a “kaleidoscope” of rainbow colors. Others (like me) have sensory aura that causes inability to speak, numbness, weakness, tingling, and/or confusion. Aura is usually temporary (but can sometimes be ongoing) and then the headache follows soon after the aura goes away.

• Vestibular migraine
  This type of migraine involves a person’s vestibular/balance system, which is why it’s called vestibular migraine. Most people with this type have constant symptoms of dizziness, lightheadedness, nausea, motion sensitivity, light/sound sensitivity, and often tingling and numbness. There are also periods of worsening symptoms after a trigger, but after the flare up goes away, there is still a baseline of the symptoms present. Headache is not as common with this type of migraine disease, but still does happen to some.

• Hemiplegic migraine
  This is the rarest type of migraine, with aura symptoms that resemble a stroke: weakness, numbness, or even paralysis on one side of the body, alongside the other usual aura symptoms like visual aura and trouble speaking, confusion, etc. Attacks can sometimes last several days, and recovery from these attacks (like muscle weakness going away completely) can take weeks or months. From what I’ve learned, headache is usually present with this type, but not always.
  

My symptoms and how they affect me

I experience all three of the above type attacks. Migraine with aura is most frequent, vestibular and hemiplegic attacks are less frequent. However, hemiplegic attacks tend to come in waves for me, and it can leave me quite disabled for days to months.

When I have a “normal” migraine headache, I don’t get visual aura, but I do get sensory aura. I get tingly in my hands/face, very nauseated, weird patches of goosebumps that come and go, and I get even more sensitive to light and sound. The headache gradually gets worse until the pain is so bad that I can’t speak, move, or open my eyes. These attacks are the easiest to stop with a rescue medication, but I am only allowed to use it 10 times a month and have headaches 25+ days a month. I often wake up already with a headache, and if I don’t, it comes within a few hours pretty much regardless of what I do.

Vestibular attacks for me don’t involve much aura, they usually come after a triggering event - a light being too bright, dappled light, strobing light, a strong smell, fast movement, too much eye movement (like when I’m reading or watching an action movie), or too much visual stimulation (going on walks, grocery stores, driving). I usually only feel unwell for hours to days, then the dizziness slowly goes away (unless I encounter another trigger!).

My hemiplegic attacks are more mild, thankfully. By that, I only mean that I don’t experience paralysis like some others do. That said, hemiplegic attacks are very scary and I hate them. They’re the worst type of attack I get, and they completely disable me when one happens. Even though I don’t experience paralysis, I do still have weakness, numbness, and ataxia (uncontrolled muscle movements) on my left side. I also get very confused and can’t speak. I can’t walk or stand during these attacks, and I can’t think either - it feels like my brain literally shuts off. Terrifying.

I’ve discovered that food often triggers these attacks (caffeine, chocolate, etc), as well as bright lights, driving, screen use, sleeping too much or too little… things like that. My rescue medications don’t help this type of attack. One time I ate a bunch of chocolate I got for Christmas (before I realized it was a trigger) and had a string of hemiplegic attacks so bad that it took me months to recover, and I needed a wheelchair until summer!

Thankfully with medication/treatment I don’t have as many vestibular attacks these days - which is REALLY nice - because my symptoms in the beginning were nonstop and very difficult to live with. These days, I only get a vestibular attack a couple of times a month. However, I still do have headache attacks almost every day, with my pain level at about 5-6 out of 10 most of the time. I also have hemiplegic attacks a couple of times a month, and some months, I have a run of them that keeps me in bed for days or weeks at a time.

I’m VERY fortunate to have access to several amazing medications that have helped a lot for me: botox injections in my head and neck every 12 weeks, new and migraine specific anti-CGRP medications, and off-label medication used for migraine. Without these, my pain level would be 8-9 out of 10 instead, I would have constant dizziness, vertigo, and nausea, and I would have hemiplegic attacks so often that I would likely be unable to get out of bed.

As of 2024, I’m having a rough time running Commonfolke due to my health. I have too many attacks, and it makes my reliability unpredictable. I try to work around it as much as I can and ask for help, but I do most of the work and when I’m too sick to work, things just can’t get done. I appreciate patience when it comes to placing an order with me and waiting for items to be sewn or shipped. I work as fast as I can, and your order will always be great quality - but maybe a little later than expected. It’s not ideal, but I really am always doing my absolute best.

If you have migraine or know someone who does, there is hope!

Thank you for taking the time to read about this cruel (and very misunderstood) disease. If you ever have questions or want to vent, please feel free to email me or DM me on Instagram. I’m a good listener and I truly empathize - not only with others that have migraine, but anyone who is affected by chronic illness.

If you don’t have migraine but know someone who does, I hope reading this has sparked your curiosity into their experience, and you continue to have an open mind and heart.

- Natalie