I am almost 50 years old and have friends who have migraines. I always considered myself lucky that I didn't suffer from them. Then about 3 weeks ago I started having a nagging headache that was only on the right side and went along my jawline. I first thought it was an abscess tooth. After 3 days of this, my right eyelid started to droop and the pupil was constricted. My first doctor visit was to my optometrist, who thought it was Horner Syndrome (drooping eyelid, constricted pupil, absence of sweating on the affected side). Two days later, the nagging headache turned into hell on earth. It felt like somebody was taking a spoon and trying to dig my eyeball out of my head. Then for kicks they would stab me in the temple. Never, ever had I experienced anything like it, including childbirth. I would literally moan from the pain. It hurt to pee. I didn't know that urinating put so much pressure on your head! My first ER visit was with a doctor who was a human being with compassion. He gave me a pain shot and a referral to a neurologist. The worst pain was over and I was left with the nagging headache, but it was bearable. Round 2 of pain from hell came a couple of days later. By that time I had had a normal CT and MRI, so I went to an urgent care facility since it was a Saturday. The nurse there took my blood pressure, then took it again to make sure, and twice it was 200/110. The doctor (a real jerk) came in and automatically accused me of being a drug seeker. I told him that was true, I was there seeking drugs, but not to get high. I wanted pain relief. He wrote me a script for BP medicine and some pain meds that did not help at all.
My nurse practitioner tested me for Rocky Mtn Spotted Fever (tested positive) and was immediately put on Doxycyline-a powerful antibiotic. I thought this at least explained why I felt like I was dying. Saw the MD a week later and was told that I had been exposed to RMSF but it was not an acute case, therefore didn't explain severe headaches. He reviewed my chart, heard my symptoms, and immediately told me I was having CH (he himself suffers from them).
Now I have to see a neurologist and an infectious disease specialist because of the positive Rocky Mountain Spotted Fever. My doctor said to see both specialists to be on the safe side, even though he is quite certain all of this is cluster headaches. I am thankful to hear all the personal experiences on here. I now know I need to talk to them about home oxygen and possibly other meds. Best of luck to other CH sufferers. I wouldn't wish the pain on my worst enemy.