Hello everyone,
To start, let me explain the title of this post. I received a new primary care manager this week and when describing my headaches was told that it sounds like cluster headaches. No tests have been done to confirm anything yet. This was the first time I had ever heard the term cluster headache. For the last few days I have been researching cluster headaches to see if the diagnosis fits, considering I've had so many other diagnosis over the years that never turn out to be correct.
Now that we have that out of the way, my background. I have had headaches since I was a child, as long as I can remember really. I don't know when they started, but I remember being the only 12 year old that planned his days around when he could take the next dose of Aleve vs the next dose of Ibuprofen to try providing relief for a headache. It's hard to remember now whether I would have been described as episodic or chronic at that time, but I can tell you that for the last 13 years, I have had headaches almost daily. I would definitely be chronic at this point in time, having less than 30 days headache free per year, if this diagnosis turns out to be correct.
Almost everything I've been reading resonates with me completely and I can relate, the location of the headaches, the sinus involvement, congestion on one side, droopy, red and teary eye. My one concern in all of this, is the amount of pain described. Everything I read says that cluster headaches are the most painful thing imaginable. While I understand that pain is subjective, and I've lived with pain my entire life, I don't know that I can describe my headaches this way. So my concern is that I've been misdiagnosed again and that I will never find relief.
Can someone chime in and explain to me, is the amount of pain a diagnostic criteria for this? Or possibly attempt to describe the pain you feel in relation to other pains on a scale of sorts. For example, my headaches are more painful than the pain I felt when I broke my foot, but less painful than the pain I felt when waking up from abdominal surgery.