Distress Data Diary

Dear Diary,

Wait a minute, this is a migraine diary; useful and important, but not such a “dear” topic.

Dear Diary,

Today I had another migraine.  The symptoms included:

As mentioned, I’m putting together a diary of migraine details for an upcoming appointment with a specialist. The other week I had one so bad that my son had to take me to my GP for a Toradol injection, to be taken with a fresh dose of Imitrex — “fresh” in both meanings, because earlier I had taken my last and slightly-expired pill.  I’d planned on asking the pharmacist to order a refill, but of course, had been unable to go into work at the grocery!  (The irony.)

“Have you made an appointment with a neurologist?” asked my doc.

“Headache speshlist; don’ remember whom.”  I held my wallet in front of my nose and squinched one eye open a millimeter to pull out the correct business card.

“Oh good, that’s just the person I wanted you to see.  Takes forever to get an appointment, though.”

“In April,” I mumbled.

“Yeup; takes forever.  Okay, I’ll have the nurse come in with the injection, and I’m writing you a ‘script for some more Imitrex.”

” ‘Ank-you.”

When I do get to see this new specialist, I want to be armed with a good data set so we can maximise the efficacy of our first appointment.  But to do that, I had to figure out what kinds of data would be needed.  This in turn meant researching the various types of headaches, migraines, and symptoms.  I got to learn lots of great new words!

If the headache is bilateral (both sides of the head), then it’s a regular tension-type headache.  I’ve had some intractable ones that linger for a couple-three days, despite various medications.

Unilateral headaches (just one side of the head) are the migraine sort.

There are the icepick migraines that feel like someone just stabbed you in the head.  Although intense, they are mercifully brief — just a minute, though there can be several repeats throughout the day.

Migraines can be temporally divided into three stages:  the prodrome or early-warning symptoms, the migraine itself, and the postdromal after-effects.  If I wake up with a migraine, then I don’t have the benefit of prodromal symptoms to alert me to take some medication and stave off the worst effects.  However, one of the benefits to keeping data sheets is the ability to suss out what sorts of symptoms are prodromal, so I can have better self-awareness.

A persistent tension headache can turn into a migraine (ugh).  Eating much wheat also seems to be a trigger for me; a small cooky isn’t bad, but a couple slices of pizza will do me in later (not to mention digestive hoo-hahs as the gluten works through my kishkas).  Barometric pressure drops — especially those that bounce back up from a swiftly-passing storm — are notorious for making my ears and head hurt.

The cognitive and mood factors can be less obviously related to migraine prodrome: brain fog, depressive state, insomnia, or light sensitivity.  You might think these would be pretty obvious, but the problem with chronic pain (from hypermobility+osteoarthritis+TMJ, especially combined with 11-13 hour work days) is that one gets into those viscous circles of pain-sleep problems-depressive states.  Throw in everyday hyperacussis and UV-sensitivity, and sometimes it’s hard to sort out what is which.  “Ain’t we got fun.”

Once I started researching various migraine symptoms, I had a much better means of both identifying and describing the various symptoms I experience.

One thing that quickly became apparent was that like snowflakes, no two migraines were precisely the same.  This is interesting from an objective point of view, but it also means that I have to spend a bit of effort to verbally identify the symptoms I experience during each migraine, and then shortly thereafter note them.  Although a cognitive task that I cannot always perform throughout the entirety of the experience, it does afford me the opportunity to detach part of my consciousness to that objective state, which gives me one step of remove from the intensity of the experience.  (My research background is useful in so many ways.)

An Aura can include visual disturbances such as:
Scintillating scotoma the classic flickering/shimmering/sparkling arc, zig-zag or castle crenelation effect;
Drifting phosphenes phosphenes are “stars” you see if you stand up too quickly or sneeze; phosphenes can also refer to the geometric patterns that happen when you press on your closed eyes;
Diplopia just the fancy word for double vision;
Oscillopsia when objects appear to oscillate, vibrate or bounce;
Photophobia “the light, augh! too bright!”
Allodynia pain from nothing in particular, or something that wouldn’t normally cause pain, “augh the sheet’s touching my arm!”;
Osmophobia “the smells, augh! too overpowering!”
Olfactory hallucinations smelling things that aren’t really there;
Phonophobia when even the clattering of dust particles falling is too loud;
Hyperacussis I startle overmuch at sudden or sharp noises — well, even more so than usual;
Auditory hallucinations hearing things that aren’t there, nor are related to my tinnitus;
Synæsthesia Feeling sounds, and other odd cross-sensory effects;
Paresthesias tingling or numb feeling like “pins and needles”, or like someone is yanking on my kneecaps or tendons;
Vertigo, nausea, vomiting, chills or clamminess;
Ataxia a “lack of order” or bad muscle coordination;
Disarthria / aphasia disarthria is trouble speaking clearly, and aphasia is problems with speaking and understanding, or making sense of reading things.

Once all that is over, there is the postdrome, or “migraine hangover”. I’ve no idea how one compares to a drinking hangover — I’ve never drunk that much! But it is something like having the flu: weakness, generalized muscle aches, laterality confusion (right v left), fine-motor difficulties, exhaustion, lack of appetite, intense thirst, intermittent strabismus (wandering eye), temporary dyslexia / reading comprehension, auditory processing lags, concentration problems, or once in a while, feeling energetic — “wow, I’m no longer in pain!”

Then of course, the was the issue of creating a useful data sheet, one that was both complete and easily used — and this is where my dual backgrounds in behavioral research and typography+layout blend well.

As with any sort of biological data, it is important to note the frequency, intensity and duration.  In addition to those classic factors, there are also the sorts of factors that one more often considers in ecology: the type, season (if any – only a data set of more than a year can determine that), and the extent, in this case, the extent of the disability that results from migraines.

I’m sorted the pain and disablement into three levels:
1 annoying pain, workable
2 moderate pain, reduced work
3 severe pain, incapacitating.

With the diary, I can then sort out the frequency, intensity and duration of the issues. So far I’m relizing that it’s much more of a problem than I had realized. It’s not so much that one gets used to pain, but that one gets used to being in pain, to headaches as a way of life.

Damn, but April’s a long ways off.

Advertisements

Some more of my favorite things

Yet another dreich day, overcast, mizzling (misty-drizzling), clammy and hovering around the freezing mark.  I’ve managed to wrench my ankle a bit, and am long-last holed up in bed with my warm rice-sock wrapped around it, a and have a bowl of oatmeal and a mug of rum-tea for comfort.

In a salute to all things cozy (because dammit, it’s January and there’s still February to slog through), I thought I’d share some of the things that make my life more comfortable.

Let’s start in the kitchen, because everybody eats.  I’ve always hated can openers, probably due to my left-handed tendencies makes hooking the mechanism onto the can seem absurdly awkward.  (Then again, my lefty can opener is also annoying.)  Cheap can openers — the sort most of us have purchased at the grocery — have lousy handles that cut into the hands, and they eventually get rusty, dull, and gross as well.  Even the KitchenAid opener with fatter handles is cumbersome, especially for my daughter who has small hands. But last year I found a wonderful tool, not just the OXO brand, but their locking Good Grips version.  The locking part means that once you’ve clinched the opener onto your can, it hangs onto it, like a Scottish Terrier with a tug-toy.  When the can’s open, push down on the little button and it releases the can.  It’s easy for arthritic grandma (me) to use, it’s easy for my son with the giant hands to use, and it’s easy for my daughter with the small hands to use.  Hooray!

can opener with comfy thick handles and a wide half-moon turnkey

I like my futon bed because it provides excellently firm support, but on the other hand, a futon is so firm that I felt like an even more arthritic “bag o’ bones” trying to sleep on it; no position was comfortable, and sleeping on my side was worst of all, as my shoulder and hip bones pressed against the mattress.  So I finally got a memory foam mattress topper.  After unwrapping and unrolling, it took a couple of days to off-gas and expand all the wrinkles out before I dragged it atop my bed and popped on the mattress cover that came with it before remaking my bed.  But the foam “breathes” well so you don’t get sweaty, and has such small pores that it doesn’t feel like lying on a sponge. And heavens, it’s amazing how much more restful my bed is now!

Once I finally ooze out of bed between the cats, it’s time to get dressed.  Half the year I start with a base layer of thin silk long underwear.  Silk is amazing  stuff; it helps you stay warm yet doesn’t get too warm.  Plus, the material is so thin and slick that my outer clothes are neither tight nor bunch up.

Often I’ll also end up wearing my gloves.  Our classroom has always been the coldest, but even at the grocery my hands will be cold.  After examining a number of styles, I finally settled on some Thermoskin arthritis gloves.

fish-scale patterned black stretch gloves without finger tips

The neoprene-like material helps trap body heat, which keeps my hands warmer despite the Raynaud’s, and that plus the compression reduces the arthritis pain.  The gloves are also covered with grippy-nubbins, so it’s easier to hold onto things.  Most arthritis gloves are that ugly medical-beige color, but I think this black color is a bit more stylish; one of my students said they look like “Spiderman gloves” which is probably as much of a compliment as one is going to get on a medical aid.

Now there’s a gripe – why IS it that anything in the “medical aid” category is nearly always ugly and over-priced?

After a couple of months of coping with the sudden attacks of vertigo, I finally realized that I wasn’t getting to work quite as well-groomed as I used to.  I wasn’t gross, just not getting my hair washed daily.  Eventually I figured out that when I don’t have time for a bath in the morning, I was skipping a quick shower because I don’t have good balance when my eyes are closed or when I’m looking upwards, both of which apply to standing in the shower and shampooing!  Okay, I decided to get a shower seat, to sit safely in the shower without feeling like I was going to fall and crack my head.  So I bop on down to the store, and within the hour emerged with a box of parts to assemble.  The assembly was simple enough, but I was slightly miffed.  Thirty-five bucks for an ugly plastic thing!  Granted, the new piece of furniture cluttering up our small bathroom is not just a shower seat — we all love the fact that it makes a great book or laptop bench when one is parked in the bathroom.  But holy cows, can’t someone design something useful that doesn’t look like it came home from the hospital?

Plastic white seat with drainage holes, on tubular metal legs

I haven’t used a cane often enough to warrant getting a fancy one, or to become a connoisseur of the various features. But when I do have a badly-twisted ankle, I’ve come to appreciate how a cane helps ease my gait. It also made a dandy pointer when I taught horticulture classes. It even gives you something to lean upon when waiting on a bench. But as everyone who’s ever used a cane knows, canes are annoying when you’re not using them. They’re hard to park securely when you’re dining, and they’re damn awkward if you’re traveling, especially on airplanes. That’s why I got a folding cane. I can just stretch the ends a bit and pop it out of joint, and fold it up to store in my carry-on bag. It’s also pretty fun to pull out and give it a little flick and click-click-click everything snaps into place. (I find this feature terribly amusing.) Currently, it lives on the floor of my car, out of the way behind the driver’s seat, waiting for the next time I need it.

What’s your favorite thing for making your life easier?

Saved by bureaucracy

( A follow-up on my shaky employment status, as described in a previous post, The Catch.)

So now I’ve twice seen the ENT (Ear, Nose & Throat doc, not tree-folk), to figure out if the vertigo, worsening tinnitus and hearing difficulties are related to Ménière’s, or “just” migraines.  At those visits I also spent time in the audiologist’s booth:  “Huh?  Sorry, I can’t see what you’re saying.”  “Oh,” he replied jovially, “this isn’t a vision test, it’s a hearing test.”  Ha, ha.  Very funny.

(Have I mentioned that lately one of the cable channels is messed up, and maddenly, we’ve not had any closed-captions on episodes of CSI ?  Listening to TV is hard enough with fussy babies who want bouncing, much less auditory processing glitches and tinnitus.)

And then something wonderful happened:

The day after my first ENT visit, it occurred to me that it might be useful to ge an official letter from the doc to give to my various bosses.  So I called in my request to the office nurse and picked it up from the receptionist and passed out copies to my supervisors and those got fowarded to Human Resources people and —

SHAZAM!

I was saved by bureaucracy.

(I mean hey, it’s gotta happen sometime, right?)

Because apparently being treated for Ménière’s disease (note the careful legal waffling on diagnostics) falls under the umbrella of an American labor law known as the The Family and Medical Leave Act of 1993 (FMLA).  Basically, taking care of sick family members, birth, adoption, or one’s own illness (covered by the Act) is protected so the worker can get unpaid sick leave without worrying about job security.

I cannot be dunned for absences related to bouts of vertigo.

My principal was of course very polite and helpful in the process of explanating this unexpected coverage.  I was asked about accommodations that might be helpful.  Alas, none of the things suggested by the Job Accommodation Network are applicable to my job (but that’s a great site if you need ideas for accommodations for most any sort of affliction or difference).

However, I was giving some 60 days of sick leave for absences related to — and only to — Ménière’s.  Despite my initial relief, my job status still feels as wobbly as my gait some days.  Stay tuned for further developments.