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Patient Education

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Hemicrania Continua

The Headache that Never Goes Away

by Elizabeth Linden


Hemicrania Continua is a type of trigeminal autonomic cephalalgias (TACs). Trigeminal autonomic cephalalgias are a group of primary headache disorders characterized by one-sided head pain around the eye and forehead. The pain range can range from mild to debilitating. It is similar to other primary headache disorders in some respects, however, it has one distinguishing feature. The pain never stops. 


In addition to the pain around the eye and forehead, HC is often associated with one-sided facial features such as:

  • dilated blood vessels in the eye

  • tears

  • nasal congestion

  • runny nose

  • drooping eyelid

  • facial sweating 


Getting a diagnosis

Getting a diagnosis of Hemicrania Continua can be a difficult journey for some because HC shares features with other headache disorders such as cluster headaches and migraines. People with HC often see more than one neurologist before reaching a proper diagnosis. To complicate matters, some people can have more than one type of headache disorder making the diagnosis even more difficult. That is why it is essential to create a headache diary to track your symptoms.


Diagnosing Hemicrania Continua

In addition to the continual pain and the clinical features stated above, there is another test to diagnose Hemicrania Continua, which is a trial treatment of a drug called indomethacin. If there is a positive response to Indomethacin, it can help confirm the diagnosis (although not all patients respond to this drug). 



Although Indomethacin is a great diagnostic tool and even treatment for HC, for some, it is not well tolerated as a long-term treatment due to gastrointestinal side effects. Many with Hemicrania Continua eventually have to taper off Indomethacin and use one or more of the treatments listed below. 


Other treatments include

  • melatonin

  • anticonvulsants, such as topiramate

  • Celebrex

  • corticosteroids

  • Amitriptyline

  • Lithium

  • Gabapentin

  • COX-2 inhibitors, such as Celebrex


Invasive Treatments

  • nerve Stimulation (vagus nerve or occipital nerve stimulation)

  • Botox Injections around the head

  • sphenopalatine ganglion block, which is an investigational therapy that cuts part of the trigeminal nerve

  • deep brain stimulation


What to avoid 

The cause of hemicrania continua is still being investigated. Researchers have found that the following activities can aggravate symptoms for many with the disorder:


  • drinking alcohol

  • exercise

  • bright light

  • changes in sleep patterns 



Hemicrania continua is a chronic daily headache condition that involves one side of your head for more than 3 months at a time. Hemicrania continua will usually respond to the drug indomethacin although this drug is not always well tolerated. Daily medications and self-care are very important for those living with this condition as it can be very challenging for anyone to live in constant pain.

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Elizabeth Linden is a retired special education teacher with 25 years of experience. She has a bachelor’s degree in Special Education and a master’s degree in Health Psychology. Liz has been an advocate for the educational needs of special education students throughout her career as well as an advocate for her own medical needs as a person with a rare headache disorder.  Liz is also a Senior Anchor with The Power of the Patient Project, and her interviews are featured throughout our digital library.

January 2023  page 4

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