- Cluster Headaches
- Interviews
Rafael's interview
How did all start?
I just came out of the dark, from nowhere and in the middle of the night.
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took me about four or five years.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Cluster Headache
What has been the most useful thing for you so far?
There is no single "the thing". It needs some things.
• A high dose, at least 720 mg, of V erapamil per day . Greatly reduces the number of pain attacks, and comes with just as distinctive side-effects.
• Oxygen for respiration via a mask in order to alleviate the intensity of attacks and shorten their duration. Special non-rebreather mask with an on demand valve HIGHLY recommended.
• Zomig nasal has given me pain-free periods of twelve hours in the worst phases. But this time should be used for doing more of whatever makes you happy.
• Imigran inject. The triptan injection for truncating a pain attack with the chemical enzyme in an emergency.
What have been your biggest difficulties?
To find a job could be arranged with my personal disabilities.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes. Not always in a desirable way.
What things have you stopped doing?
Planning.
I dunno when there are good times and when there are bad times. So I don't do any planning in the more distant future.
What do you think about the future?
Treatments will get better.
I found a job where I can arrange with my limitations.
So, maybe there will also be a way to not stay alone.
So far, which years have been the best years in your life? What have you done during them?
The best were also the worst. My early twenties, where I just lived, but forget to organize my future.
That was fun, but not sustainable.
What would you like to do if you didn’t have your condition?
Can't remember. Have to deal with it too long.
Maybe I'd like to travel. This is something I am afraid of. At home I have my complete logistics. My Doctors, the pharmacy, everything I need.
If you had to describe your life in a sentence, what would it be?
It had a few problems.
Finally, what advice would you give to a person in a similar situation?
Stay calm.
Keep informed.
Never surrender.
