Tom's interview
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How did all start?
It all started with a major attack back i 1993, for which my wife was hospitalized for three weeks at the neurological department at the county hospital of Buskerud (Drammen, Norway).
Do you already have a diagnosis? How long did it take you to get it?
Yes, my wife was finally diagnosed with chronic cluster headache i May 2018, so it took her 25 years. She turned chronic during early fall of 2016. The diagnose was done by a specialist in headaches (a neurologist) at Sandvika Nevrosenter (near Oslo) in Norway.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My wife also suffers from Gastrointestinal Hypermotility Syndrome (painful spasms in her small intestine) and RLS. She also suffers from a chronic frozen shoulder, set for surgery in late 2018 or early 2019. And then she have also had successful laser surgery on both eyes due to glaucoma.
What has been the most useful thing for you so far?
No doubt; Greater Occipital Nerve Block and Pure Medical Oxygen
What have been your biggest difficulties?
Beside social isolation, no doubt weight loss and bad appetite, and the fact that no medical remedy seems to work, due to severe side effects.
How has your social and family environment reacted? Have your social or family relationships changed?
My wife has no social life beyond her closest family, due to the fact that she has six to eight attacks every 24 hours. We have a very few friends that comes by, but that's all.
What things have you stopped doing?
Jogging and socializing. My wife used to run a mile six days a week.
What do you think about the future?
She is optimistic actually, despite all her trouble.
So far, which years have been the best years in your life? What have you done during them?
The years before 1993 of course. We used to travel a lot.
What would you like to do if you didn’t have your condition?
Travel again, abroad, and jogging.
If you had to describe your life in a sentence, what would it be?
Crap, but she have learned to live with her headaches!
Finally, what advice would you give to a person in a similar situation?
Anyone with a long time headache should demand to se a neurologist who specializes in headaches. Do not take no for an answer!
