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Daily Headaches for over a year!
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JaylinHarris posted:
My headache began April 12, 2012. I say headache not headaches because I've only been headache free 3 days out of that time span. Once after my spinal tap, once after a night at the er and the last being the day after my gastic bypass because I was still on pain meds. I've had enough MRI's and CT's to practially make me glow in the dark and even after loosing 115lbs and going between neurologists, ents and even cardiologists all they can do is "manage" my pain levels. I take a nexium/indomethiacin combo three times a day with doses of keppra in the morning and at night, which on most days keeps me functional by keeping my headaches at a 3-4 level. Still daily pain but I can drive, work etc. without the nausea, dizziness and pain leaving me bed ridden. On the days when my everyday meds only poke at my headache (and seem to make it angry) Cambia or Sprix keeps me functional but I'm still at a 6-7 pain level and it's 8-9 by the end of the night if I don't alternate with otc tylenol products. Then there are those days at least once or twice every two weeks where I'm curled up in bed, rubbish bin close by and black out curtains drawn when injections of toradol only manage to take the edge off enough to let me sleep between bouts of vomiting. Anything beyond that and my neuro's can only suggest a costly visit to the er. My headaches don't come with an aura and are one sided, most days that is behind and slightly above my left eye, those are the indomethician days. On Toradol or ER days the pain is ALWAYS on my right side, again behind and slightly above the eye. The only thing the MRI's and CT's revealed were cysts on the right side of my sinuses (asymptomatic - sinus pressure and pain wise other than a twice yearly sinus infection at the begining of spring and fall since childhood) and a straightening of my cervical spine which now thanks to pt my neck no longer hurts. My real concern is as time has gone on my body seems to be getting worse. My bp is low (high 90's - very low 100's/ high 50's- mid 60's) my highest pulse is in the mid 70's but usually hovers around 58-66, I'm constantly exhausted and cold with very poor concentraition and trouble with short term memory.Combined with the headaches and their tag team of nausea, dizziness and vomitting and it's a real party. I can get stuck in a cycle for days where I'm throwing up so much I can't keep meds down (even anti-nausea) which only makes the pain worse and the vomitting worse. Overall I've missed almost 30 days of work this year because of this and I feel like people don't believe me. I'm at a loss. I take the pain medication just to have some sort of quality of life but at the same time, a life on pain meds (which at times don't even work) is no life at all. I don't want pills thrown at me, I want to know why I'm having headaches and what can be done other than pain management. I figured if anybody would understand it's somebody here.
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misfit27 responded:
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.

All the best,

Brian


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