I'm very sorry to read what you are going through. I just posted my own long-term headache mini-story, and 8 years later, I still don't have a diagnosis or a reliable pain treatment strategy. When my head started hurting, like you said, I missed tons of work and stopped doing nearly everything I loved. About a year or so went by and I resumed my life, just with a headache. Granted, the days when I feel like I'm going to throw up from pain are still very difficult, but if there are good waves, I'm still out surfing. I do my best to savor the days of minor pain, and just continually hope for a cure.
As far as other people go, try not to take it personally. I've been thrown out of doctors offices being accused of pain med seeking. I've been accused of using the headache as an excuse for laziness. My coworkers (mostly from the Caribbean) watch me take pills and constantly get on my case about natural remedies and the nativity of all Americans who trust in Western medicine. I suppose it's easy to say "I'd never take pain medicine" if you've never been in pain... Even my loving wife, who is an RN and very well understands what I'm going through, sometimes seems like she just doesn't 'get it'. More than a few times, she's asked me what response I want when I say it's a bad headache day. Truth is, I don't even know. I just try to remind myself that most of the world has no idea what this feels like, and although I could use some sympathy, I'm glad more people don't suffer like this.
Anyway, I'm sorry for the ramble. I hope you are not in pain. If you get any information, please keep me posted, it sounds like we have similar problems. I really hope your headache doesn't last as long as mine.
I am a 38 year-old male, athletic-frame, 6'1, 185lbs, considered by most standards to be in excellent physical condition. People often guess me 10+ years younger than I am. I surf, skateboard, ride bikes and motorcycles on a near-daily basis.
I've had a headache since 2005. Some days it's almost nonexistent, others very severe. Always on my left side, always just over the eye. It responds moderately to xanax and valium, very little to tramadol and opiates, and very well to ambien. Indocine has no effect, high-dose steroids seem to help for a couple of days. Tylenol is my go-to medication, but it is by no means reliable. Adderall makes it easier to cope.
I've had 7 years of negative MRI's, blood tests, CT's, EEG's, EMG's and neuro exams. I've seen neurologists, neuro opthamologists, Physical therapy, acupuncture, radio frequency, steroid injections, chiropractic adjustments and dietary changes have had no effects at all.
Other findings that might be significant - stiffness and soreness in left side of jaw and neck. Pain and tenderness when touching left eye - I'm now nearly certain this is the origin of the headache, however, I have seen 2 reputable neuro opthamologists who have found nothing. At times, however, in the past, I have been convinced the cause was neck or jaw related. Another possible noteworthy fact is that if I take ambien the night before, I am much less likely to have a bad headache the following day.
At this point, I'm at my end. I don't know what to do and I am afraid the medications I take (most of which don't work anyway) are going to shorten my life. I do my best to be optimistic, but as it stands, right now, my basic purpose is to witness a bad headache. I don't remember what life was like without the headache, but it sure sounds amazing. I don't know where else to turn, but I'd greatly appreciate any suggestions. I live in NYC, but can travel. I am happy to be a published case, I hate the fact that other people are probably suffering from this as well.