Sandy's interview
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How did all start?
I have had these episodic cluster headaches since childhood but wasn't accurately diagnosed until my late thirties. I had a 7 year sabbatical from them from the age of 42 but in the last 4 weeks they have returned.
Do you already have a diagnosis? How long did it take you to get it?
Yes, took almost 30 years for an accurate diagnosis to be reached.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Was always treated for migraine but that was largely ineffectual. Wasn't until I was prescribed titans was any difference really noticeable.
What has been the most useful thing for you so far?
Triptans, never tried 100% 02 but will be pursuing this with my GP
What have been your biggest difficulties?
Trying to function as a husband, father, colleague and human being during an episode is really difficult. No-one truly believing the pain you feel either is almost as isolating as the attack itself.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes, people don't understand the impact of cluster headaches and where this no understanding, courtesy and empathy are not long in running out
What things have you stopped doing?
Eating certain foods, avoiding bright light, noise, certain odours. Always being on edge waiting on the next attack really limits your functionality as a human
What do you think about the future?
I am hopeful that an increase in awareness of this condition may generate research into causes and treatments.
So far, which years have been the best years in your life? What have you done during them?
All my life has been wonderful, I have married, had children, held meaningful employment. Just a shame I have had to share it Clusters.
What would you like to do if you didn’t have your condition?
Anything would be possible
If you had to describe your life in a sentence, what would it be?
Stop the world; I want off
Finally, what advice would you give to a person in a similar situation?
As painful as they are they will pass. You are not alone.
