I am a patient (not a medical professional!) who has been dealing with hemicrania continua since 2009. This causes constant head and facial pain on one side of the head 24/7. I am looking into occipital nerve stimulation as a treatment as I have tried everything else.
Monday, May 30, 2011
Getting started
I should first warn anyone reading this that this is my first attempt at a blog. I do tend to ramble on at times and I am trying to work on that. I am just basically aiming to describe what daily life is like dealing with chronic head pain (I try not to call it a headache anymore as it is just really worse than a regular ol' headache to me. My sister has nicknamed it "Damian"). I have the diagnosis of hemicrania continua. To me this feels like a migraine daily with 30-50 times a day of so-called "ice pick pains" or "exacerbations" which basically to me feels like something being driven into my head (like an ice pick, screwdriver, whatever object you want to imagine here) through the temple to the cheekbone area for me. Add to that a flaming red/hot cheek and sometimes a droopy looking left eyelid (yep only the left side so that is a great look). It does get difficult most days trying to maintain my full-time work status (at least I work at home), mommy/teacher (we are homeschooling again next year), household duties and I have to admit I am severely lacking in most of those areas at any given time lately (thankfully it is summer so school is kind of on the backburner right now). Lucky for me I do have the greatest husband/hunk on the planet who does a lot of what I do not feel like doing when he is not working his full time away from home job plus doing mechanic work at home. I also have the best sister on the planet and best best friend on the planet who are very understanding and listen to me complain/whine a lot. I also lately have had the chance to talk (through e-mail/forums) to some really nice folks who are very helpful and understanding also. My family is the biggest reason I want to get out of bed every morning. My biggest wish is that we could take a family vacation to the beach and the kids would not have to listen to me complain and I could enjoy the bright sunshine without holding my head and wanting to run to the shade. Of course running would be on the top of the list of things I do not normally do anymore. Actually physical activity worsens the headache quite a bit so that is definitely a no-no. Add to that the inability to eat healthily (I will get to that later) and that is a recipe for weight gain/disaster especially in a 30-something year old I suppose. Am I rambling yet??
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