- Cluster Headaches
- Interviews
PaulaMac's interview
How did all start?
I always had intense headaches as a child. And, looking back, I recall they came on every day after school around the same time. Who knows if that's as far back as they go.I had cat scans and MRIs, no real answers. A family history of migraines led everyone to believe it was just migraines.
I had my first serious, debilitating string of clusters when I was 22, just after graduating from college. I thought it was a very severe 31-day migraine. I worked with my family doctor trying all manner of migraine treatments.. nothing stopped it. Finally, it went away, but I struggled with similar issues for years.
Do you already have a diagnosis? How long did it take you to get it?
It took years for me to understand what was really going on. After several doctors, chiropractors, headache specialists, and neurologists, I finally learned I had cluster headaches. I was episodic for many years but became chronic in 2016.
What has been the most useful thing for you so far?
CBD oil has been very helpful to me. I am not sure if I'm the only CHer to have headaches like this, but they aren't always a 'ten'. Most often, they fall somewhere in the 5-7 range. As long as they are, 2 doses of CBD oil as soon as I feel the pain coming on will reduce my episodes to perhaps only 1 or 2 in a day and drive the pain down to a '3 or 4'. Normally, before CBD oil, I would have as many as 10-12 a day, all VERY painful.
I also found relief in the anti-inflammatory regimen on clusterbusters.org. I've lapsed on it now, but it was one of the things that helped break up my extreme headaches of 2016. I had severe cluster days almost every 3 days for 10 months.
What have been your biggest difficulties?
Prior to 2016, my CH was way more manageable- since it was episodic. I also was self-employed for almost a decade and could work my client appointments and obligations around my pain. But, I went back to work in a corporate setting in 2016 and found myself having to attend meetings with an oxygen tank or with an ice pack strapped to my face. Or, trying to convince my boss to let me work from home when I couldn't go 45 minutes without excruciating pain.
How has your social and family environment reacted? Have your social or family relationships changed?
My closest friends and family are typically very supportive. But, my acquaintances and co-workers don't get why I can't just take an aspirin and be all good. Friends that aren't very close don't understand why I back out of plans. My social circle has gotten smaller, but I appreciate them more.
What things have you stopped doing?
I've stopped making plans well in advance, and I've stopped being angry or disappointed in myself when I have to cancel because of the pain.
What do you think about the future?
Honestly, when I am in a bad string of headaches, I don't feel so great about the future. But, when they are managed, I feel hopeful about the coming progress of research.
Finally, what advice would you give to a person in a similar situation?
Be easy on yourself.
