Cluster Headache: Years with no Diagnosis?
If you have cluster headache, how many years was it before you were diagnosed? Leave a comment.
A recent study in the USA reported the results of a questionnaire sent to 1604 participants with cluster. Almost 28% reported that they had had cluster episodes since childhood!
So then, how many of those patients were diagnosed as children? The results show that only about 15% were diagnosed before the age of 18. That’s right – almost 85% of patients with cluster headache went undiagnosed as children/teens (up to 18). But – why?
Study leader Dr. Mark Burish has some theories. ScienceDaily reports:
While the reasons behind this trend remain unknown, Burish has come up with several theories based on conversations with pediatric neurologists, patients, and their parents. Family members and doctors are not recognizing it because it is rare, and patients are not being referred to the appropriate specialists. Also, features of cluster headache in children could be different than they are in adults, considering that there are small differences between children and adults in other headaches like migraine.
New findings about cluster headaches (ScienceDaily)
The study did show a somewhat higher rate of family history with cluster than some other studies. In other words, patients with cluster who also had family members with cluster. Also, patients with a family history of cluster headache may have a different progression of the condition. Dr. Burish notes:
Cluster headache seems to start at a younger age in patients with a family history of cluster headache, compared to an older age in patients without a family history. In genetics, this is called ‘anticipation,’ which suggests there may be a gene or genes involved. Identifying those genes could be a huge breakthrough for cluster headache.
Dr. Mark Burish
For more information, check out the study here: Cluster headache epidemiology including pediatric onset, sex, and ICHD criteria: Results from the International Cluster Headache Questionnaire