stuffy head or migraine?

I'm not sure if it's my freshly diagnosed autoimmune issue, my mucositis (yech), or just bad luck, but I've gotten lots more colds in the last couple of years than I ever had before. I don't mind them so much--sometimes I enjoy the scratchy, sultry voice (it allows me sing in lower registers as I belt along with the radio in my car--I'm amazing).

Perhaps it's not the frequency of colds but their duration that has changed in recent years. I used to get a cold for 2-3 days and then have little to no trace of it left. Nowadays it seems my cold develops slowly and takes a long time to leave. This one's been around for at least a week and a half. It started with sneezing and stuffy-headed-ness. Then it moved into my throat, where it settled in and made it hard for me to speak loudly enough for people to understand me well. After my voice started coming back early last week, I figured the cold was on its way out. WRONG. It moved back into my head, focusing mainly on the left side of my sinus cavity.

Here's the rub: I can't always tell the difference between the beginning stages of a migraine and sinus congestion. From what I understand, a lot of migraineurs confuse the two. (Let's not rehash the sinus headache issue here, though.) This past Wednesday, I went to bed early with a congested head; I woke in the middle of the night a couple of times because my head was so heavy and it was hard to breathe. After awaking Thursday and walking around the house a bit, I realized I was not suffering from just sinus congestion: I had a migraine that was rapidly progressing. I kicked myself for not having taken a triptan in the middle of the night.

But it had been so hard to tell the difference between sinus pressure & the early stages of migraine!

This morning I awoke with so much sinus congestion on the left that I immediately opened my bedside table drawer to get a Maxalt tab. There was no such tab in the drawer, so, favoring another hour in bed over getting up to look for my triptan pill, I took a nasal decongestent (I have an emergency drug arsenal next to my bed, of course). Upon waking in earnest, I dared to try my neti pot again. (Months ago I had a strange experience wherein using my neti pot led to an immediate and severe migraine--not sure how I screwed up, but I did and it HURT. I've been scared to try the pot again ever since despite its having worked wonders pre-pain-incident.) I can't claim that any one thing cured today's head issues, but the decongestent + neti pot flush rid me of the migrainey feeling I had. Interesting.

Do any migraineurs (or folks with sinus problems like me) have any tips as to how to know when to use a triptan and when to focus on the sinuses? How do you tell the difference between the beginning of a migraine and a side effect of sinus problems?

bad days, good days

The past week has been a mixture of amazing fun and terrible bedridden-ness. I had several days affected by migraine but got by okay with my triptans. Disturbingly, the drugs worked okay only half the time--they limited the pain but didn't erase it all (or the other side effects). That was frustrating, but at least post-triptans I could function okay.

Thursday I missed a bonfire party at a friend's house. I'd been looking forward to this. Friday I babysat and felt really good during the day, playing like crazy with the kids in the 70-something degree weather. Friday night was crappy, but I had an okay time lying low and watching The Wire. (Not uplifting, exactly, but so very well-done!) Saturday I woke up extra-migrainey but the drugs worked okay by the afternoon. I spent many an hour with my honey bunny and had a lovely evening. The migraine started to creep back in the evening but I ignored it. Mistake? Perhaps.

Sunday.
was.
terrible.

I got out of bed to pee a couple of times--other than that, J. waited on me hand and foot. Around ten p.m. I was okay enough to take a shower, but I had to sit down in the water stream and rest halfway through. When the shower was over and I was dry and p.j.ed, I felt as if I'd spent three hours working out. Wah.

Many of you don't know this, but I LOVE MARY TYLER MOORE. I love her. LOVE HER. This love is deeply connected to my love for The Mary Tyler Moore Show, and I've had the pleasure of seeing a couple MTM Show stars in real life. (That was thrilling.) Months ago, one of my friends told me that Ed Asner ("Lou Grant") would be in Athens on February 15 to perform in a play for Darwin Day. She scored us free tickets (yess) and the countdown began.

That show was Sunday, 2/15. I couldn't go. Not even triptans could help save me: I'd taken my allotment for the week. I was too busy being in pain despite the Lortab, lying in bed hoping to throw up to ease some of the discomfort. (I've known many migraineurs who feel this way--once you get to feeling bad enough, you know that getting sick to your stomach will bring you some relief.) I missed Lou Grant! I also missed a Sunday night party I'd been looking forward to. Wah. Poor me.

It was the worst day I'd had in a long time. I'm hoping that its being out of the way (along with my period, which I'm joyed to wave goodbye to for a few weeks) will give me another few weeks of success. Fingers crossed.

a quick stumble off the wagon

Today I grabbed a roast beef sandwich from a local bar/restaurant and went to another bar to hang out with Handicapped Twin, who just started bartending. I scarfed down the delicious sandwich and enjoyed every bite.

Hours later, as I was getting up to leave, I had an epiphany. "Oh my god!" HT: "What?" Jan: "I just realized I ate white flour and cheese for lunch--and I didn't even think twice about it. It didn't even occur to me that I was not following my diet!"

Oops.

Perhaps it's coincidence, but this afternoon my tummy has been jumpy for the first time in many days.

cold fingers and toes!

Until I read the much-talked-about The Migraine Brain, I hadn't realized that lots of migraineurs report frequently having cold hands and feet. I've often joked that from October to May my extremities are ice-cold, figuring it had something to do with my height, my circulation, my lack of exercise, and/or my tendency to feel faint rather easily. That being said, I never really thought of it as something "real"; I figured instead it was just one of those bothersome things about being skinny and lanky. Whatev.

But now I wonder if there might be something I can do to warm up! Even with socks on, my toes are frigid; when I go to hug the kids I babysit for, they shriek in delight as they run away from me, thinking I was trying to trick them by putting icy fingers on their skin. I've read a bit about Raynaud's Phenomenon, but I'm not sure if that is what plagues migraineurs or if there's something else going on all together.

In the meantime, I'll wear my hat and gloves outside even when others look at me like I'm a bit crazy. (I get cold even when it's in the 60s!)

Anyone else have cold hands and feet more often than so-called "regular" folks?

Dinah won't you blow, Dinah won't you blow...

WARNING: THIS POST MIGHT HAVE TOO MUCH INFORMATION FOR THE NON-MUCUS-FRIENDLY OR FEINT OF HEART.

I have had this bout of sinusitis for at least (at least!) a week now. Despite a Z-pack, lots of rest, and some doctor-recommended over-the-counter meds, the cough and mucus are not going away as quickly as I'd expect. Ugh.

On Tuesday night, the night before my doctor's appointment, I was doing the routine nose-blow-before-bed move when, all of a sudden, liquid started coming out of my right nostril. A lot of it. For a few minutes, I continuously blew my nose and clear, very warm water (water?) came out of my right nostril. At first I couldn't help but be relieved: it seemed that as soon as this strange liquid was brought forth, the pain in my cheek and ear immediately became MUCH better. So much better. But then I got a little nervous. I've never seen anything like that happen before and even thought about calling J. to see if it'd ever happened to him. "Oh, you're worrying for nothing," thought I. After the few minutes of the clear stuff (which was nothing like mucus, mind you) coming out, it seemed the coast was clear. I sat on my bed cross-legged and--suddenly--plop! It was dripping from my nose and onto my pant leg. GROSS. A couple more tissues and everything was fine. As if it'd never happened.

I told the doctor about this episode because it seemed so strange to me. Okay, my cyberchondriac self knew the chances were slim, but couldn't there be a chance I was leaking cerebrospinal fluid? (I didn't voice this concern to the doctor, but I had voiced it to myself the night of the weirdness after a twenty minute internet search.) As I told her about the episode, she frowned and looked at me: "Well, since you edit medical documents, I'm guessing you might be a bit concerned about a cerebrospinal fluid leak?" "Yes!" (I didn't mention that I don't edit anything dealing with CSF leak ever and that it was a late-night Googling session that made me aware of the problem in the first place. Let her think I have professional interest.) She told me that she really doubted there was a CSF leak, but that if it happened again like that I should call her and make a trip to the ER. She said it was quite possible that the severity of my sinus problem could have meant that for days my mucus has been building up in my sinuses. I was staying well hydrated, and the water I was drinking wasn't able to mix well with the older, thicker, nastier mucus so the watery stuff was sort of building up behind the old, gross mucus. Once I cleared that old, super-green mucus out for the moment, the watery stuff was released in a gush. Maybe. (Yuck, right?) She then said, "And it's not as if you've had any head injury lately, right?" "Actually, I was in a car wreck in mid-November and had a minor head injury." Oh. Then let's keep an eye out just in case something else is up, kids!

The waterfall phenomenon has not happened again, but that doesn't mean I'm not keeping an eye (a nose?) out just in case.

And then tonight something strange happened. I have been feeling a bit better today--just a few coughs and much less need to blow my nose (though I certainly am obviously sick, both audibly and visibly). Had a migraine this morning (period-related) but Imitrex wiped it out immediately. I blew my nose before settling into bed when suddenly I realized I couldn't stop. Couldn't stop blowing my nose, that is. I spent five minutes blowing my nose, people--and everything was coming from the right nostril. It seemed each tissue must be my last, but within 2-3 seconds I could feel more coming immediately. Then the clear feeling for a second, then the need to blow my nose. (Here's when I go into even more detail, for those of you who are as gross as I and have continued reading this far!) The mucus was green but not as thick as it's been for the last few days. It was green and really thin and liquidy. And it kept coming. For 5-7 minutes. TWELVE tissues' worth.

Does anyone have any insight? I'm hoping this all can be easily explained. I have never had such a sinus problem last so long, so perhaps this is just par for the course when sinusitis has progressed as far as mine has.

Still--let me know your thoughts, even if you are as gross and crazy as I have sounded in this post!

Goodnight!

how wonderful is THIS?!

Came across this in my daily news search online. Smile!

wreck wreck wreck

Yesterday I was in a little thing I like to call a car wreck. Got hit on the driver's side and front of my car when a distracted dude ran a red light. Yeow!

My car's condition is in limbo: will it be declared totaled, or will a shop repair it and try (but fail) to restore it to its old glory? It's sitting all lonely and sad in a local tow yard. Poor baby. The whole front section of the car got knocked off--when you look at the car from the front, it looks like a burgundy colored face whose jaw has dropped clean to the ground. Surprised at something.

Various fluids of varying colors poured from the car and down the asphalt. Not sure what exploded, but it sure did leak.

To my happiness, no one was majorly injured. J., the beau, was in the passenger seat and ended up with lots of muscle strain/sprain and a headache. I hit my head on something (don't know what) and had a REGULAR HEADACHE plus some muscle straining and pain. Now I am achey but expect the feeling to go away after a few days. I hope this doesn't spur further health issues.

I don't know what the point of this post is. I feel oddly out of it. I'm used to taking Lortab as a Migraine attack rescue med now and again, but taking it for muscle aches along with this muscle relaxer makes for a very out-of-it Janet. I may well be writing nonsense here. So be it.

I can't tell you the last time I had a headache that wasn't a migraine. It was such an unfamiliar feeling: tightness all around my head, a dull ache that didn't throb or pierce. It's gone now, thank goodness, but it made me think about those who have tension headaches and NOT migraine. Recently a friend told me that she used to be one of those people who thought migraineurs were big sissies, that migraine headaches were actually just pretty bad regular headaches. Migraineurs were whiners. Wimpy whiners. But then she got her first migraine attack and finally realized she'd been wrong all that time--the pain of migraine is nothing compared to your average headache.

What if I could always have headaches like these instead of migraines? thought I. It seemed almost a luxury to have head pain that didn't distract me from life, pain that was irrefutably present but not debilitating. I'm jealous of the millions of people who don't get migraine. I'm so very jealous.

We've now reached the end of my rambling. Tomorrow I get to resume what is already another kind of headache: endless calls to insurance companies and the hospital. Wish me luck!

Just another Oct. 31

I skipped Halloween tonight. This seems pretty sad at first: I mean, I have always loved Halloween and tend to dress up each year--if you exclude a handful of early high school Halloweens when I was too cool (and too old, according to my parents) to dress up and go trick-or-treating.

I've told you a little bit about my dear friend HT before. She and I are very similar in a variety of ways--it's not just our height and Germanic looks. (What an odd non-Janet-sounding sentence. I'll keep it.) We get along well for many reasons; it helps that she is perhaps the only real-life person I know who genuinely understands what it's like to live with a chronic illness. Because our personalities and senses of humor are so similar, our perspectives are that much more in sync.

Earlier this week, I called her to see if she'd be interesting in spending the night IN on Halloween. As the night is her favorite holiday, I knew she might be reluctant to commit. As she'd been pretty sick off and on for the weeks prior, I knew she'd probably end up being able to hang out with little old me. As it turns out, we did get to spend time together. We had dinner, chit-chatted, and watched The Shining for the first time in over a decade (for each of us). Let me just tell you: this movie is AWESOME. I somehow remembered it as being sort of slow and boring until the final scenes--but my 28-year-old self now scolds my high school self for not having realized how wonderfully suspenseful the film is. The experience I had watching it was lessened by the pain and discomfort I felt during the loud scenes or very bright shots. I thought to myself a few times, "Wow--this would REALLY be painful in a movie theatre!" I asked HT to turn the volume down once or twice, but the high-pitched, sitting-on-the-edge-of-your-seat squeaky strings still got to me. When I watch TV with my boyfriend, I almost always have to ask him to turn it down for me. (He's a musician who must already have irreversible hearing damage; I'm an ultra-sensitive girlfriend who is getting paid back by karma for all the times her older sister used to tell her to turn down the volume.) I can relax pretty well on my own, but now even laid-back activities are threats of pain and discomfort. I don't like that, even when I'm in a friend's quiet, smoke-free house--a place that should be lovely for a migraineur--I have to ask her to make many adjustments to accommodate me.

I suppose I feel as if I'm always on guard; that a trigger could be waiting around the corner. IS waiting around the corner, and I've got to be quick enough to catch it.

Even now I'm affected by the unintentional elements of my visit. When HT gave me a long hug goodnight, I could smell hand sanitizer on her, hand sanitizer with a strong scent (strong for me, at least). Even the hug couldn't be an enjoyable goodbye--instead I was thinking, "Oh, I hope she doesn't hold on too long, because that smell is going to wear off onto my clothes and it'll bug me!" Now I'm sitting at this computer, 30 minutes after saying goodnight, and the hand sanitizer smell is wafting through the air and sending daggers through my nose into my brain. Sorry.

So yeah. Back to Halloween. We drove downtown once to deliver HT's husband's i.d. to him--he'd forgotten to carry it along with him in his costume. We got to see a few costumes and were creepily incognito: we wore bags on our heads as we parked outside my favorite bar and waited for HT's husband to come out. Only he and two other friends knew who we were; they snapped a few photos of us. I looked beyond them and saw many of my friends outside the bar, no one knowing I was near. And then we pulled off.

And you know what? I'm not sorry I didn't got out. At this pinot, the night is over for most folks in town and I'm sure they had a great time. So did I. I continue to get used to this lower-key Janet who chooses to stay in when she used to be social, social, social. I hope I stop questioning her choices so much and trust her to do the right thing.

When meds make you lose your mind

To everyone who's ever felt out of it or stupid while taking a brain-altering drug: this short but poignant New York Times article by Judith Warner is wonderful! I responded to the article with this long letter (which initially started as a short comment). Links throughout lead you to relevant blog entries.

Dear Judith,

I confided in a friend a few weeks back about how stupid and out of it I felt while on my preventive drug (Zonegran) for around 1.5 years. He forwarded me this article this morning--I'm so glad it was published in such a large forum!

I joked a lot about the potential side effects ("difficulty word-finding," "cognitive impairment") when I first started popping Zonegran, but I never thought I'd actually be one of the patients affected. My cognitive impairment didn't kick in until a few months into drug treatment--and the patient leaflet said that all the cognitive side effects are usually here and gone after the first six weeks of treatment. I decided I was just getting stupid. For the first time, I wasn't in school or doing academic reading. I couldn't work a 9-5 job because of my migraine attacks. Maybe I just lost my brain.

Madge (commenter above), it seems you're admonishing Judith for not having said something sooner to her doctor or pharmacist. It seems to me that Judith took action pretty quickly. As for me, I was embarrassed about the side effects and not even sure if they were side effects from Zonegran--maybe they were just side effects of life, the new and not-so-improved Janet. I'd always prided myself on my writing and thinking ability and suddenly that was disappearing. This phenomenon is so strange, so unfamiliar, and so hard to pinpoint that it's not easy to see that it's connected to a drug you started months ago. I didn't say anything to my doctor or pharmacist about it until months later.

Someone named "cla" commented before me about how busy doctors are today, how perhaps we patients should adjust our expectations instead of expecting doctors to be at our beck and call (I'm paraphrasing here--hope I've not taken any liberties, cla). This is b.s.! I KNOW that doctors are overwhelmed with insurance claims, paperwork, bureaucracy, and five visits a day from drug company peddlers who overwhelm them with ads and sample medications. I think that cognitive side effects should be treated as seriously as physical side effects, that doctors should be honest and up front with patients. Migraine disease is so much more than a series of episodes (which may or may not involve a headache)--it's a disorder that affects your ability to function, your ability to have a so-called "normal" life, your ability to enjoy what you have without being worried about the next attack. If doctors are focused entirely on how the body is affected (if they're focused on that at all and not distracted by their bureaucratic duties) and not focused on how the patient and her life are altered due to the disease (or drugs given to treat the disease), those doctors need some lessons in patient-doctor communication. They need to learn more about migraine's ins and outs and realize that, just because the clinical trials didn't reveal a prevalence of a certain side effect, LOTS of people are losing their minds, their selves, while on certain prescription meds.

After over a year and a half on Zonegran, I finally weaned myself off (with doctor's straightforward assistance and little care as to why). I still don't feel as smart as I used to. I still have trouble finding the words that used to come so easily to me--but I have to have the faith that this will come back to me. That I've taken brain-altering drugs and it might just take awhile for the firing synapses to resume their old speed.

In closing, thanks for this article. Thank you so much.

MIgraines & aspartame

Before my own Migraine disease kicked in, I recall my mother's intolerance of aspartame (NutraSweet)--she realized after some trial and error that she got an awful headache whenever she had this sugar substitute. I kept on chewing sugar-free gum happily, not necessarily enjoying the hyper-sweet, chemical taste of the additive but not feeling sick because of it.

Cue the Migraine disease onset in 8th or 9th grade. Soon I became unable to have even a small dose of aspartame. Once, my senior year of college, I was doing classroom observation for my education minor and accepted a HALF a stick of sugarless gum. (The guy offering it was the teacher, a man a couple years older than me whom I found rather cute. Note to self and others: do not experiment with even a tiny bit of Migraine-triggering substance just to flirt with a boy! He'll end up being weird and creepy and not calling when he says he will.) Within an hour of popping the gum in my mouth (which I masticated for approximately fifteen minutes, I'll have you know), I got an aspartame-induced Migraine attack, first one triggered by the substance in well over a year.

My sensitivity to the stuff probably changes day to day, as is the case with most Migraine triggers. If I have a bunch of triggers happening all at once (stress, altitude changes, shifts in barometric pressure) and THEN I have some sugar-free gum, I'll probably get a severe headache. If I am feeling good, not feeling stressed, and the weather is flat in my low-altitude home state of Georgia, a stick of the gum might not effect me so severely. Dig it?

I'm really displeased with this article Google Reader just found for me. The FDA refutes all connection between aspartame and Migraine headaches. The article uses the incorrect Migraine terminology throughout, saying that some patients claim that aspartame causes Migraine--we here all know the key word should be "triggers" and not "causes."

Having a well-respected (ahem) governing body like the FDA purport that the connection between the substance and the disease is all in sufferers' head just leaves a bad taste in my mouth. Let me admit first that I am one part statistician (one very small part, but still) and do believe that, if at all possible, treatments should be thoroughly evaluated for safety and efficacy using a well-run, randomized study--double-blind and large, if applicable. I do think that you can't put 100% of your trust in people's anecdotal reports, especially if you're going to publish your findings in an official manner.

But.

But.

There's a LOT to be said for what patients experience that cannot be (or at least has not yet been) measured in a statistically sound trial. It drives me crazy to go to my neurologist and get up the guts to tell him about some weird reaction I think I might be having to one of the medications I'm on; it's even harder to tell his stone-faced nurse practitioner that I have weird side effects during my Migraine attacks. They seem to not believe me unless the same reaction/side effect has been discovered by one of the Big Pharma-sponsored studies. And this makes me angry. Very angry.

The aspartame-triggering-Migraine-attacks phenomenon is NOT a myth. We migraineurs are not banding together to bring down the NutraSweet company. The fact that I feel feverish despite my temperature being steady during certain phases of a Migraine attack is indisputable--but, oh wait! My doctor has never heard of that. I must be making this up.

We need to be cautious telling one another that something is a be-all, end-all cure--or a be-all, end-all, vicious trigger, for that matter. But we migraineurs' strength often lies in our grassroots effort to communicate with one another after having stepped away from the doctors' offices and pharmaceutical-company-sponsored "informative" sites. We have to open up the conversation about our disease, our pain, and what we perceive as truth. There's something afoot with the aspartame issue, and I will not lie down and pretend that I have been making up this association all along.

an unexpected (but unsurprising) side effect of Migraine

Sorry to not have much original content on this post and the last one, but this story caught my eye! I have oft said I wish I had an extra-strength prescription in my glasses for when I'm getting a Migraine--my vision gets worse during my aura and the headache itself.

http://www.metrowestdailynews.com/news/x1657300501/Police-say-migraine-led-to-Trolley-Square-crash

longest, most resistent attack in quite awhile

Early Thursday evening, my brain started to fluctuate between pre-migraine mode and healthy mode. As I sat on the phone with my sister around eleven p.m., mild, steady pain and congestion set in and I decided to go to bed in the hopes that sleep would restore me to normalcy. I woke up around 6:30 the next morning and took a Maxalt. Two hours later, I was on the way to the my babysitting charges' house and took another, as the first did nothing to help. The pain dissipated soon after, and I had a VERY sleepy morning with E., the three-year-old I was watching all day while her brothers and parents went to Six Flags. I felt bad for being so out of it, but that's what Maxalt does--especially when I have to take two. E. and I watched Sesame Street and I lay down, trying to relax a bit.

In the afternoon, we went to my house to meet up with Jim. Later we headed to a local park where there's a swimming beach and small lake. The sand was so bright, the reflection of the sun off the water was blinding my eyes even though I had a hat pulled low over my head. I knew the Migraine was on its way back. It set in in earnest that evening and I fell asleep after E. went to bed, waiting for her family to get home so I could get to my own bed.

My Maxalt allowance is three per 24 hours, though I very rarely take more than one (let alone two) in a day. I took one before bed because the pain was distracting me from sleep.

Around 4 AM, I woke up with a groggy head but no pain!
At 9, I woke up for real and felt like crap.

The pain had come back. Three Maxalts, one Naproxen, one Lortab, and lots of sleep didn't cure this menstrual migraine. It hasn't been this bad in such a long time! I made a pot of coffee and took a nasal decongestent this morning and feel much better, but not up to par. I had to cancel an important bookstore meeting at noon and said no to hanging out with a friend. Tonight is my friends' wedding reception (they got married last week) and I really hope I'm well enough to go.

The end.

a weight off my shoulders

As I mentioned awhile back, I was set to write an article for my city's weekly paper, Flagpole. The article's subject? The relationship among creativity and illness (mental and physical). I got lots of good tips, conducted some research, and even interviewed a few people.

Know when I turned the article into the editor? Never.

This duty has been weighing on my mind during this the worst period of Migraine pain and debility I've had in a long while. I missed out on work five or six days due to illness in the last couple of months, a marked change from missing just one once in awhile. I am having an awesome time working on bookstore stuff when I can handle it, but I've let a lot of paperwork and work commitments fall to the wayside if it was at all possible to procrastinate.

The article was really stress-inducing. Each time (truly, each time) I set aside for working just on the article I was either sick (75% of the time) or forced to do last-minute work-related things (25% of the time). Today I finally wrote to the editor to let her know I wouldn't be sending her the article any time soon--at this point, she might not even want it.

As soon as that long strip of April attacks began (the neverending headache from April 10-17, to be exact), I thought to myself, "I should nix this article idea. It's one small thing in the grand scheme of things; it's one small thing in a regular person's life. But for me it's just too heavy a commitment at this point." But I didn't admit that to myself for more than a minute at a time. Instead, I kept thinking I could get it all done. The two things I found most difficult were:
1. my perceived need to not let this kind stranger, the editor, think badly of me and,
2. my tendency to deny the fact that what I used to be able to do is not equal to what I can accomplish now--my abilities are diminished, and I hate that.

Here's what I wrote to the editor. I hope I don't come across too feeble or too annoying or too fake. Then again, I need to work on not worrying about what others think, right? Oh, I hope so.

Dear ________,

I'm embarrassed to have to write to you today. I should've written a few weeks ago, but I kept hoping that this awful bout of Migraine attacks would taper off as it usually does. I've been spending far more time lying in bed feeling bad than I have out in the world working or socializing. Weather changes can signal a particularly difficult time in a migraineur's life, but this spring has been intolerable.

All the research for the article is finished. I have rough starts of two rough drafts but nothing solid to speak of. I know we didn't establish a deadline, but it's clear to me that I am very late.

If you'd be interested in waiting to hear from me when I'm on the mend, then I'd be happy to finish up the work I've begun then--I just can't be sure when that will be. As of right now, I'm having to notify you to let you both know that I cannot fulfill my commitments right now despite my deep wish to.

I hope you can try to understand! Again, I'm really sorry.

Sincerely,

Janet Geddis
http://themigrainegirl.blogspot.com

things have gone awry!

Shortly after posting earlier about what a great day I was having, a Migraine rapidly approached. To top it off, I had strange lower back pain and felt really bad, really fast.

Because of the muscle aches, I decided to go the Lortab + muscle relaxer route. It worked, but now I feel unpleasantly out of it and sad about the direction in which my day turned--before I got to my "should" list. I did go to the new Athens Farmers Market with my friend C., and I got that yard work done.

The last few times I've felt great, I've neglected to see that as a harbinger of a Migraine attack to come. As noted, I have the common prodrome side effect of "a sense of euphoria" before the headache begins. I wish I could just have euphoric feelings without the episode to follow.

I feel as if I'm making little sense; my fingers are typing more slowly than usual. Good ol' painkillers. You make me weak!

Thanks to Heather for the sweet thoughts--earlier this afternoon, she commented on how happy she was I was having a good day.

a new coffee shop experience

I'm at my favorite local coffee joint, Jittery Joe's (which is now opening franchises around, though the Five Points location in Athens shall never be beat!). Back when I used to visit Athens to see my sister or my friends, I'd come here. Once I moved here in 2004, I took up residence here a few nights a week to do research, to work on grad school papers, and to socialize.

Things are different now. I finished grad school two years ago and hardly visit cafes nowadays. I brought a bunch of books and references for the article I should* have done already, but instead I'm sitting here thinking of how things have changed.

1. I ordered a decaf coffee and didn't put any sugar in it. This is the new Janet who's trying to only have caffeine when she needs to kick a faint Migraine out of the picture.

2. I am google searching for information on Migraine and drug side effects instead of trying to surreptitiously visit social networking sites to waste time.

3. My forearms and hands feel numb from the Imitrex I had to take a couple of hours ago before my evening job began. I can't type as accurately or as quickly when my fingers feel drugged.

4. I'm afraid I don't have the concentration and procrastination-fueled fervor that once accompanied coffee shop trips and waiting 'til the last minute.

5. I'm stealing glances at the girls who are working behind the espresso machine. One has hair down past her butt. It's beautiful and shiny and it's a difficult hairdo to pull off, but she does it! I know I could never have this hair, as it would weigh on my head. The other girl has her blond hair in a high ponytail--this style, which took me quite a while to master when I was young, is now not in the realm of possibilities for me, as after ten minutes the scalp and head pain would drive me crazy. Even releasing my hair from such a constraining hairdo leads to aches when my hair suddenly bends in a different direction. This all leaves me wondering what I'll do when I have to put my hair up in an up 'do for my friend's wedding Saturday. Aah!


*A great post I read somewhere recently discussed the need to have fewer (if any) shoulds in your life. "Oh, I should be working. I should call my cousin. I should do the dishes." These seemingly obligatory duties weigh on us more and more when what we could be doing is focusing on what we have been able to do and what we have accomplished. The original piece I read was more eloquent, but I can't find it!

unsolicited advice

I've found the more I learn about Migraine disease--what it is and what it is not--the stronger my tendency to deliver unsolicited advice to strangers and friends alike.

Just tonight, a friend mentioned "headaches from acute sinusitis." My first instinct was to respond with, "Did you think they were sinus headaches? Did your doctor say they were? Sinus headache is actually not a valid diagnosis. You could be having Migraines."

My friend (and former professor) has been getting terrible, debilitating headaches more and more in the last couple of years. One of her nicknames is "The Human Barometer." All we informed migraineurs know this is a huge indication she's probably suffering from Migraines: debilitating pain that makes her sensitive to ordinarily tolerable stimuli, getting awful pain each time the barometric pressure shifts? A self-diagnosis of hypoglycemia because the pain rears its ugly head each time she misses a meal? She sure sounds like a candidate for Migraine disease diagnosis.

I've eagerly pushed for her to see her doctor to discuss a possible Migraine diagnosis, but, last I heard, she wasn't buying my argument. I felt I was physically restraining myself from pummeling her with a long list of signs and indications that one might be getting Migraine attacks. I tried to keep it easy, but I wanted to cry, "I love you! I hate that you're hurting! I think I know the first step to getting you better: figuring out for sure what you have!"

My sister has been getting Migraine-like headaches recently. Her over the counter painkillers aren't fitting the bill, and when she describes the headaches they sure do sound like Migraine. With a family brimming with Migraine sufferers plus a history of childhood headache, she sure is built for adult Migraine disease. But, as yet, she's not gotten a diagnosis. I want to force her to go to the doctor to figure this out; if it is Migraine, there's probably an acute treatment she can give herself when in pain. She doesn't have to suffer!

I always stop myself. I hate sounding preachy. This is one of the reasons I have proclaimed myself "The Migraine Girl"--I feel sometimes I am speaking from the standpoint of someone whose whole mission is to cut down on Migraine frequency and severity for myself and others. I want to spread the word, to share the gospel. But, in truth, a lot of people don't want to hear it. And I should respect that.

I wonder if anyone reading this has had trouble with this: seeing the signs in other folks but not wanting to go off on your Migraine disease diatribe.

Anywho. That's all.

scalp/hair pain

I sometimes feel extra sensitive on my scalp when I'm having a Migraine; without a doubt, I am a girl who can't stand to have a regular ponytail in for more than a few minutes because of the aches that come as a result. During and right after a Migraine, I've been known to feel scalp pain.

But this is different. All day the crown of my head has ached as if I had a ponytail pulling on it--but I hadn't put my hair up at all when the pain started. The pain is all around the roots of my hair and is exacerbated by my pressing on my ultra-sensitive scalp. It's truly a strange sensation, especially since, as I've said, I didn't have a ponytail in, nor am I having a Migraine.

A cursory Google search gave me some leads when I looked up "scalp pain" and "hair pain," but I'm doubting I have the ailments (other than Migraine) mentioned as possible reasons for scalp pain.

This post is mainly for myself in the case this continues--it'd be nice to be able to tell my neurologist when it started and how it felt.

Does anyone here feel this same sensation sometimes?

missing out on all the fun

My friend just called me from the Okkervil River show. One of my favorite songs of theirs, "Our Life is a Not Movie or Maybe" (which plays when you visit their site) blared through my cell phone speaker, peppered with high-pitched screams of delight from the audience and some whistles.

You see, I was supposed to be at that show. L. bought me a ticket a month or so ago as a birthday gift, and I was thrilled by the fact that I was really into BOTH bands--the opener (Okkervil River) and the headlining act (The New Pornographers). This evening, I did some yoga stretches for my neck and then took a warm shower, telling myself this was a recipe for a good evening. I'd taken a nap earlier in the day to have extra reserves of energy at my command so I could stay out late and still wake up early for work tomorrow. I did everything right.

After my shower, I wanted to creep into oversized jeans and a hoodie for comfort; instead, I put on an equally comfortable but cute dress in an effort to convince myself I was feeling better. See? Look at me! I have mascara and a dress on, plus some earplugs in my pocket to boot. Surely I'm going to have a great night out!

Went to dinner. Tried to park downtown in a [free after 6 PM] metered spot but had no luck. When I went to my ol' trusty backup free lots, I was alarmed to see that BOTH of them now charge $5 to park. Frustrated and inordinately enraged (was that me or the steroids that wanted to crash the cars in the parking lot?), I drove back through the city streets 'til I found a spot. I wanted so badly to honk obnoxiously over and over to assert my premier position as another guy tried to deftly slide into the spot I'd been waiting for for a good sixty seconds, but I refrained and kept it at a light tap. Oh, I was ANGRY. Far angrier than I should've been, I realize. I tend to get fed up easily when I'm not feeling well, when I'm out of control--I'd bet the "extreme irritability" that comes along with the steroids for some people didn't help. (Last night I nearly had a temper tantrum in the middle of the night because the damned sheet kept getting tangled--I wanted to rip the stupid thing off the bed and burn it. 'Roidy, much?)

So there I was. I parked, took a deep breath, and walked to meet my friend C.--I was now 15 minutes late. We hopped restaurants a few times 'til we found one with no wait, and, after a strange coughing attack (my throat has felt weird lately), I sat down and eagerly awaited my sub sandwich.

It was at that point it hit me. I was exhausted again. My 45-minute outing had zapped my energy. I'm sick of sleeping, sick of lying down, sick of being inside my house. But going to a loud rock show was going to be a silly move, most likely. In any case, there's no way for me to see which one would be the better option in reality, to go to the show or to skip it--I have to choose one path with every decision I make and there's never any knowing what could have been. Maybe the show would've had me relaxed, jumping up and down, and feeling better. And maybe the crowded theater, the loud music, and the high-pitched cheering would have been a recipe for disaster.

L. came to where I was sitting with C. and hung out for a couple minutes. She has always been so loyal and so good to me regarding my Migraines. "I don't want you to go if it's going to make you feel bad," she said, and having her support allowed me to officially bail out, guilt free. I've known her for years now, and instead of getting more frustrated at my self-set, self-preserving limitations I make as time goes on, she's more understanding and less apt to pressure me to do something my body can't handle.

As I walked past the theater on the way to my car, I heard another favorite song ("A Hand to Take Hold of the Scene") playing from the stage. I paused. I peered in at the stage and saw the small figures bouncing to the sound of their music. The trumpets joined in.

I kept walking, the sounds of the music echoing off the small city block. As soon as I climbed into my car, there was someone else waiting to take my spot.

what gives?

I'm nearing my second day of the steroids. Granted, I took my first set of pills last evening around 8:30, so really the first and second days' worth of 'roids have only been in my system for a little over 24 hours. (Gross--did I really just write "'roids"?) But still--what gives!?

There's so much pressure in my sinuses, neck, and head. My neurologist (or rather, the assistant who always calls on his behalf) instructed me to not take any of my regular acute or rescue meds, so I feel screwed right now. It's been years since I've had to suffer through a Migraine attack this long.

I must have become more wimpy over the years, cause I just can't take it anymore. In high school and college (especially college), I pretty much went triptan-free. (I was diagnosed and given Imitrex when I was 21, about to start my senior year at college.) Before the diagnosis, I would have to muddle through the pain and side effects for up to days at a time. Now I can't let one go one for long before reaching for my emergency kit. Perhaps having an official name for my disease made it more real for me--I realized I wasn't just nursing a recurring, frustrating headache--instead, I was treating symptoms of a serious, life-altering disease.

This afternoon my beau and his friend dropped by for a bit, and I had a good hour or so of feeling okay--no major pains, but still a general sense of uneasiness and weakness. I made sandwiches and cut up fruit for dinner, but that seemed to be the last straw--as soon as I took my last bite, I was ready to lie down again despite my utter boredom with my bedroom at this point. A few hours later, I reemerged from my room for a warm bath. Using this pain-relieving ointment I got recently on my neck and upper back proved to feel amazing when combined with the warm bath water--I felt as if my neck was both chilled and warm at the same time as the hot water splashed on the ointment. It felt goooood. But the respite the bath allowed me was brief, and I got up and tried to do a couple of things before feeling bad again. Had a nice conversation on the phone with one of my best friends, but the last ten minutes or so became a struggle as I tried to sound chipper despite my head's throbbing.

I'm not sleepy. I've been sleeping so much. Sitting up hurts; lying down hurts. I can't take medication other than the steroids I'm on for three more days or the daily meds I pop. No Imitrex. No Maxalt. No mind-numbing Lortab.

When will this kick in? Am I continuing to get new Migraine attacks because of stress and the omnipresent Georgia pollen, or is this the same Migraine continuing its awful journey?

I guess I'll try to convince myself I'm tired again. The last few nights I've fallen asleep listening to guided visualization tapes and/or NPR podcasts (This American Life, Radio Lab, and Selected Shorts are my favorites).

Goodnight.

pain that woke me from sleep

For the first time in many months, I had such a bad migraine headache last night that I woke from sleep as soon as the Lortab wore off (around 5 AM). I called off work last night and lay on the couch, listening to radio show podcasts and watching stupid TV (after having dimmed the screen as dark as it would go and putting on sunglasses!). When my boyfriend came over after work, he encountered a girl lying on a couch in PJs with a washcloth over her face, a heating pad on her back, a TMJ dysfunction FaceCaddy around her neck (it had fallen), and a guided imagery CD playing on the computer. The heating elements had been turned off for awhile, and he commented that I was burning hot. He found the thermometer, took my temperature, and discovered I was hovering at 97.5 despite my hot, hot skin and face.

As I mentioned before, this has been a record week for BAD headaches. I'm used to going through times where there are a few minor ones and one major one in a week, but five big ones in six days is making me feel like I did brief periods years ago. AAAHH! I'd scream if it didn't hurt so much.

Because I've gone the forbidden route and taken three triptans already this week, I was too nervous to take another last night. Had one Lortab (7.5) mg and a snack before bed to absorb it; at 5 I woke up and took two more. Now it's 9:33 and the achiness seems to be returning despite the continued tingling effect of Lortab.

Lots of this has to do with stress, mainly stress from a neighborhood situation. I'm voluntarily on the board and have recently been pummeled by a series of emails and requests that give me WAY more responsibility than my body can take; the thinly-veiled personal insults aren't exactly helping either.

Let it go...let it go...let it go.

My neck hurts. My head hurts. I want to give up.