Memorial Day is a time to remember our veterans, and also a time to get together and celebrate with family and friends. If the weather is nice, it typically kicks off the first barbeque of the season - and lots of booze. And me as the designated driver.
I haven’t been drunk in approximately a decade. And no, it isn’t because I have a drinking problem, or some major fear of losing control issue. It’s for a reason I have no hope of fixing, which for someone like me is infuriating. It’s a syndrome called “chronic paroxymal hemicrania.” Sounds exotic, no? It’s not.
Almost 10 years ago, shortly after my second daughter was born, I started getting headaches on the left side of my head. At first I didn’t think anything of it…two kids, a full time job, we were in the process of selling our company - I wrote it off as stress. And yet, as it started to get worse, I began to track them. What started as a headache once or twice a week quickly escalated to multiple times a day. I finally scheduled an appointment with a neurologist to hear what she might have to say.
And there was good news. After receiving the news that there was “nothing remarkable about my brain,” (that is what they say when you don’t have a brain tumor), I was feeling pretty good. However, it took about two years to actually figure out what was causing the actual problem.
Chronic paroxysmal hemicrania (CPH) is diagnosed as a form of cluster headaches on one side of your head. It presents as a series of short, intense headaches. It’s a pretty rare form of headaches; 1% of headache sufferers get the cluster variety. I am a tiny subset of that 1% that share this particular issue. This is one area where I don’t love being different. There’s not a ton of research or info on this topic.
My headaches typically last between 1 and 5 minutes, about 7 or 8 times a day. At risk of sounding over dramatic, when one hits, it feels like I am being stabbed with a knife in the left side of my skull. Most of the time I don’t notice them anymore, probably like anyone with a chronic pain issue - I’m able to just tune them out. On particularly bad days, I can’t focus during that particular period of time. They start as quickly as they go away. They suck.
While there is no cause or cure to CPH, there is a drug that is supposed to be effective in wiping out all of the symptoms. I am allergic to it. So the only thing I was left with was “pain management.” For me, the right solution is at least 7 hours of sleep a night, exercise, eating regular meals, and taking my medicine. I am really religious about taking my medicine. I do my best on the others, but often life gets in the way no matter how good my intentions are. At this point after so many years, I’ve found the right combination of daily medications that regulate my headaches so I can function normally. Twice I have tried to go off them to see what would happen because I like to think I am pretty tough. It was horrific. Without going into much detail I’ll share that I will be one of the people with a legitimate need and will serious beneficiary of legalized dispensaries in Massachusetts. And that should help too.
I’ve tried everything to manage the pain in addition to the above. I’ve been to acupuncturists, massage therapists, and tried yoga, pilates and everything shy of a naked medicine man dripping water on my forehead. Everyone who knows about my “issue” has offered ideas theories and ideas for treatment. I have tried them all. They do not work, but I genuinely appreciate the care in which they are given.
For the first few years, I was really quiet about this issue. I really dislike having limitations of any kind. (I have others, and I’ll get to those later.) Plus, in my mind, if I act as if I DON’T have an issue, it’s far easier for me to live a normal life. I never want to use having a headache as an excuse for not getting my work done, not playing with my kids, etc. However, over time, I felt like I needed to explain myself to friends and family.
For example, I’ve got some weird quirks. When I have a headache, my eyes get bloodshot and I tend to rub my temples. Until I admitted there was a problem, I am sure I looked like a crazy person. And then there is the drinking. I’ve never been a big drinker, but on occasions were most people are having a great time and enjoying a cocktail or four, I am pacing myself like I did when my parents allowed me to in high school where I could “sip one beer all night long so you can fit in.” I’ve figured out that I can only drink about 2 drinks at any given time. If I drink more, it combines with my headache medicine and makes me violently ill. If I decide I want to indulge and have a “fun night out,” and have a few more, I have to forgo taking my medication…and then I suffer insane headaches the next day. So I chose not to drink.
I’m sure if this had occurred in college or in my early 20’s when drinking plays a much bigger role in one’s lifestyle, it would have posed a far larger challenge. But it’s not a huge deal to me. My friends always have a designated driver. I’m pretty fun without needing to drink (I think).
It’s always bothered me that if you google this “syndrome,” one of the nicknames you’ll find associated with it is “suicide headaches.” Apparently in a study of Cluster Headache patients, 55% of them suggested they had suicidal thoughts because of the pain involved. I can’t even imagine that.
There are people coming home from war right now, or who have lost their lives defending our country. They are to be honored and celebrated. I am just a girl who has a bad headache problem. Does it suck? Without question. But we ALL have issues. It is very easy for me to keep my head issue in perspective when I walk down the street, as I did today, and see a vet with no legs sitting in a wheelchair, trying to move on with his life after defending mine. My headaches are trivial compared to the challenges he faces.
While I love walking through open doors, I tend to try and keep the challenges I face stuffed in the back of the closet where they belong. I will never be a victim.
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