Andrea really knows how to throw a party...

That’s quite the mouthful, isn’t it?  I really don’t like to discuss my pain issues often, but there are times (like now) that they come boiling to the surface and I kinda need to touch on them.

The above is my actual diagnosis, written in a chart or ten.

In a nutshell, it means I wake up with a headache and I go to bed with a headache.  The severity of that headache depends on any number of issues – what I’ve eaten, how much sleep I’ve gotten, what time of the month it is, if the moon is full, if my medication schedule is even slightly off kilter (even as much as an hour on my Topamax can completely screw me up), and stress.  Just to name a few.

For the most part, I can handle it.  I use enough Flexeril to put down a small pachyderm, Topamax to help minimize the amount of migraines, limit my migraine triggers (Crystal Light is of the devil.. thanks go to Sue for introducing me to 4C!), and use narcotics to manage my pain through the day.

Also?  I get shots in my skull, neck, and upper back every 10-12 weeks that help.  (No, I won’t put a picture here.  Some get squeamish.  Interested?  Go here.  I get 10 shots, though.)

However, there are times I get into a pain cycle in which nothing I do works.  No matter how many pills I take, they don’t work.  Even Ambien, which normally kicks me out in 10 minutes, has no effect.  And it’s because of my RNY.  Thanks.

I’m on day 8.  It will NOT last to day 9.  I guarantee you that right now.

I’m not telling you this to garner sympathy, get well-wishes, ask for chickens, etc.  I’m telling you because I tend to get quite introspective when I can’t get out of my head.  I think about things that I don’t normally allow into my head-space.  And it’s freaked a few people out – thus the explanation.

I listen to music all day long.  It is a coping mechanism for me.  It helps me focus on something other than how I feel.  And if you ask any chronic pain patient (well, I say that.. I know some that bitch and moan, and use their illness as an excuse for everything.. I try desperately not to ever do that).  I also tend to do a great deal of Sudoku when I’m hurting, but that’s irrelevant.  In any case, when I’m in a cycle, I tend to let my guard down, let my introspection show a bit more, and let people see a bit more of what I’m thinking.  Including the playlists that happen to be going.

And, well, I obsess.  I tend to focus on a few things at once.  Intently.  A few artists, a few authors, a few activities at once.  And it shows.  I have a ton of nail polishes — and just bought a new one the other night.  Currently obsessed with Collective Soul (much to Beth’s chagrin), and Criminal Minds (much to Magnus’).  But in the end, it’s just a facet of me.  Always has been, and always will be.  I’ll just find a different obsession next pain cycle.  Or maybe I’ll have cycled back.  Who knows?

So for those who’ve expressed some worry about my “lyrical leanings” of late — don’t worry.  I’ll be back to normal soon enough.

“See I’m no more or less of an angel than you’d have me be.” – Ed Roland

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8 Responses to “Daily chronic headache of idiopathic nature with frequent migraine and single instance of cluster headache”

  1. Haven says:

    SIGH. So much of what you wrote here resonates with me. I also have daily headaches which can drive a mad woman sane nearly but nonetheless, I am just batshit crazy. I feel for you in the respect that the pain cycle is relentless. I can’t take migraine meds (they make my heart rate skyrocket and the skipping beats is maddening thanks to a lovely condition called Neurocardiogenic Syncope as well as having runs of PVC’s and PAC’s), I won’t take narcotics except on rare occasions because of my fear of addiction and the shots don’t give me enough relief to deal with the pain of getting them. So I deal.. as much as possible.

    I just ordered your lab book, hoping to find some answers or at least some guidance for some insight as to where to look for deficiencies that may be causing this maddening cycle. You have my sympathies.. and my understanding. If the music helps.. I say roll with it. o_O


  2. Laurie says:

    =) ♥

  3. Andrea says:

    Haven – I also have NCS, but my meds tend to drop my BP into the “how are you still walking and talking?” range. I was actually asked that once by a nurse when I went in to get a shot after med after med had failed.

    I finally gave up and took a Dilaudid. And the edge is off.

  4. MacMadame says:

    Just curious… Have you tried acupuncture or Chinese medicine or anything else non-traditional? If so, what happened?

    I have mixed feelings about these things. I know people who have made amazing recoveries from stuff Western Medicine couldn’t touch (like my mom who’s Hepatitis C is pretty much in remission thanks to Chinese Herbal Medicine), but I tried the supplements and acupuncture for my calf issues and I’m not convinced it did squat.

    But apparently 33% of people in one study did get some migraine relieve from acupuncture so who knows…

  5. Andrea says:

    I went for a trigger point massage yesterday, and I swear it actually made it worse.

    I’ve tried accupuncture before, but the most I heard was how to “fix” my diet and that’s not what I need. I need how to fix my head and the problems with my muscles in my back that cause my daily headaches.

  6. Sarah says:

    I am so, so sorry. My husband is a cluster headache sufferer, and knowing what he goes through on the occasional basis, I can only imagine what you have to deal with. When he starts to get the “demon” knocking on the door, we’re on pins and needles for the next three weeks or so, wondering when the door is going to break down and he’ll have an episode. It’s no fun.

  7. Amanda says:

    It’s as though you are describing my issues. I was with a really good pain Dr. who decided to close his clinic to focus on working in the OR. That was in March and I have yet to find a suitable Dr. who does the injections as well as medication management. The cycle of chronic pain is enough to make you want to go play in highway traffic!

  8. Meesha says:

    I’m curious, do you happen to have a Mirena? (I seem to recall reading that you do) I ask b/c I had mine switched to a Paragard earlier this year and my headaches (and heart issues–I had RVOT) screeched to a halt aside from the tolerable “Oh yay, I’m going to be ragging soon” headache that I’ve had all my life.

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