a brain with a red HIV awareness ribbon intertwined in its folds

HIV and Chronic Migraine

When we found out that I was HIV positive, I started researching and talking to the infectious disease doctor that was assigned my case at the hospital. I had been battling chronic migraines for 9 years by the time I found out that I had HIV. The countless neurologists that I had seen over all those years never once tested me for HIV.

I do understand that this is something you normally get tested for by a gynecologist. Despite this, I feel like neurologists should check for HIV when someone comes to them with chronic migraine. The more I learn about the connection between HIV and migraine, the more that I feel like I should have found out about my status sooner.

Migraines, headaches, and HIV

Chronic migraine is when the individual has 15 or more migraine days a month. In a study of 200 people with HIV, 27.5 percent of the individuals had chronic migraine. This percentage is a huge increase from the normal 2 percent in the general population.1 The author of the study, Todd Smitherman, stated that “the strongest predictor of headache was the severity of HIV disease, such that patients with more advanced disease had more frequent, more severe and more disabling migraines.”1

Controlling HIV to decrease number of migraines

This would mean that individuals whose HIV is uncontrolled would be dealing with those most disabling migraines. The hope would also be that once the HIV becomes controlled, the chronic migraine would improve to some extent. Unfortunately, about 50 percent of individuals with HIV and AIDS suffer from some type and intensity of headache.1

My chronic migraine experience

I had episodic migraines since I was a teenager. Episodic migraine is defined by 14 or less migraine days a month. For me, it was much less than those 14 days a month. In 2009, my migraines became more and more regular until they were daily. Everyone kept telling me it was due to the stress of working and finishing two Bachelor’s degrees.

HIV testing was never part of any tests or labs

When I finished school and the migraines never improved, I went to my first neurologist appointment. After that first appointment, neurologists did blood work and more scans than I can even remember. Throughout all of this, I was never tested for HIV. I do feel as though at least one of the neurologists should have included the test for HIV in the blood work they were doing.

The need for thorough care

The actor Charlie Sheen did an interview in 2015 to discuss his HIV status. He explained how the migraines he experienced were bad enough that he thought he had a brain tumor. When he sought treatment for the migraines, his doctor found out about his status.2 This is the type of thorough treatment that we all deserve.

Surprising enough for me, solely based on my t-cells and viral count, the doctors estimated that I could have been positive for somewhere between 7 and 10 years by the time I was diagnosed. This time frame would encompass the time I started seeing a neurologist for chronic migraine.

I can only wonder how both my migraine treatment and my HIV treatment could have been different if I knew all those years earlier about my status. I hope this article helps others be able to receive all the proper diagnosis and care.

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