Living With Migraine and Postural Tachycardia Syndrome (POTS)

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I had had a migraine the other day and noticed over the course of the past few days my POTS (Postural Tachycardia Syndrome) was acting up in short spurts during the early morning hours.

I felt dizzy when standing from lying down or sitting, was experiencing that overwhelming fatigue in the mornings, my eyelids felt so heavy, my eyes would only be half open (not sure if that’s from migraine or the POTS). Putting one leg in front of the other was such an effort.

That night I heard my golden retriever barking at the door and instinctively jumped out of bed. The next thing I remember was my forehead crashing against the cold ceramic floor. I had not quite made it out of the bedroom.

My husband came running to me, and I said, “I’m ok; I just need to lie here for a minute.”

I could feel the swelling on my forehead already beginning. Slowly, I made it into the bathroom, and then the last thing I remember was waking up on the bathroom floor by the sink (I would later learn that it was this second fall where I’d hit my side against the sink and severely bruised my rib). Knowing what caused this (POTS), my husband and I decided against going to the Emergency Room, where I’d wait forever and presumably be sent home after I made it clear I suffer from POTS.

As he tried to help me up to a standing position, the blood again went to my lower extremities, and I became dead weight. This time I went down nose first on the hard floor. My nose began bleeding, and I needed to get to bed. Eventually, we dragged me to bed, where we iced the golf ball growing on my forehead, stopped the nosebleed, and I eventually slept several more hours.

The National Headache Foundation reports:

Postural tachycardia syndrome (POTS), a disorder that causes lightheadedness, fainting, and a rapid heart rate, is common among patients with migraine.

Nearly 30 percent of people with POTS have migraine, according to Brent Goodman, MD, of the Mayo Clinic in Scottsdale, Arizona, who conducted a retrospective study to investigate the link.

Additionally, Goodman and his colleagues found that 46 percent of migraine patients experienced syncope–a loss of consciousness because of a drop in blood pressure–at least once and were more likely to experience recurrent syncopal episodes than people without migraine.

These and other findings suggest that those with migraine may be predisposed to having symptoms of orthostatic intolerance—problems that appear when standing up but disappear when sitting or lying down. (National Headache Foundation, 2023).

The most significant mistake I made was not calling my PCP the next morning, as I developed two black eyes, bruising around my nose, and a hematoma over my eyelid. Eventually, I was forced to see my doctors, as I just didn’t feel well all over, and the rib pain was debilitating.

Sadly, this was not the only time POTS has caused me injury. On one occasion, I fractured a bone in my back, and on another required stitches on my chin.

This is a frightening condition, as one often gets a little warning before the worst events happen, and the consequences can be severe. The other problem is that there is relatively little treatment available for POTS, though most patients are under the care of a cardiologist.

For me, clearly, the connection I have is due to my chronic migraine status:

Migraine is the most common comorbidity in patients with POTS, a heterogeneous disorder of the autonomic nervous system characterized by orthostatic intolerance and positional tachycardia. POTS is a debilitating illness with few effective treatments (Mueller, 2022).

Migraine researchers are working to better understand the connections between migraine and POTS. Suffering from one chronic illness is enough but adding a second (at least) complicates life even further. Sometimes I find it difficult to discern which symptoms to attribute to what condition. We live lives that force us to manage so many.

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Significantly, more POTS patients are being diagnosed because of a bout with COVID. While my case is not related to this virus, POTS has become a familiar illness for many who have suffered from it. The hope would be that more research will be done and more treatments found.