Jeff Tweedy, one of the more widely known migraine sufferers, has written a piece for the New York Times about his migraine experiences. While his are far worse than mine have ever been, I identify with a lot he has to say in there. And I’m really glad to see that I’ve been right all along about “Less Than You Think”‘s noise-drone coda being his interpretation of a migraine. I’ve never seen any confirmation of that until now, but the moment I heard that I immediately knew I was “hearing” a migraine sufferer reaching out through music. And, yes, every time I get a fairly serious migraine, I feel exactly the same way he does – that any progress I’ve made has been dashed and I’m on the downhill slide. I guess we migraineurs are probably not the most positive lot around.
March 29, 2008
March 25, 2008
My new Ipod arrived yesterday. Amanda ran around to the front door to retrieve the amazingly small box when we got home – Ipods come in smaller and smaller boxes as time goes on. My first one, a 4th generation 40gb model, came in what I guess is a 6″ x 6″ cube box. The next, the just-retired 5.5 gen 80gb, came in a 6″ x 6″ x 1.5″ or so box. This one? Just a little 5″ x 2″ x 1.5″ or so box. There’s something to be said about the perceived amount of money being spent on these – back when the Ipod was still “new,” spending $350 on something like this was a lot of money, so the package needed to be bigger and more meaningful. Now that it’s such an important part of so many of our daily lives, and that these are often replacements rather than new items for many of us, it’s more of a commodity and doesn’t need to look quite so impressive. Smaller boxes = more Ipods in shipping boxes = lower shipping costs for Apple. Weird how that happens, huh?
Some of my excitement was dampened, however, by an oncoming migraine. I didn’t realize at the time, but something was clearly wrong. The whole day, in fact, something was wrong – I just felt “off,” weirdly hungry, and craving – this should have tipped me off – a Mr. Goodbar. And ONLY a Mr. Goodbar. Nothing else would do. About the time I made dinner I started feeling exhaustion and achiness setting in, but not in a normal way. Within a couple hours, my head was slowly cranking up the hurting, and I realized I was getting very annoyed with sounds around me – I couldn’t focus. I remembered reading something about taking Tylenol to head off a migraine, so I jumped on the computer and read up on it and sure enough, that is recommended. Not too much later I did indeed feel a little better, but still very exhausted. Unfortunately, I woke up this morning feeling much the same, and not much else has changed. That is life for us migraine sufferers. It’s not awful, I’ve had much worse, but it’s not how I wanted to spend today.
So, for the time being, my new Ipod is gleaming silver in its new case . . . ignored. There’s already over 90gb of stuff on there and I want to listen but every time I go to listen, I just can’t because, like last night, my brain is annoyed. That I managed to sit and fill it last night is pretty amazing to me, given how irritable and crappy I was starting to feel. That said, I’m pretty thrilled that the 90gb represents the majority “gotta have it,” large-capacity stuff (King Crimson catalog: 7gb,) and what goes on there from now on will be bands with one or two albums. Yet part of me keeps thinking, “90gb? I’ve got 240gb on my computer. There must be a lot more I’m forgetting about that I have to have . . .” I hope not!
February 7, 2008
(sigh) It’s 8pm and Amazon still hasn’t delivered my promised-today package. Really annoyed.
Other than that, today actually was a really great day. It’s the first time in quite a few days that I haven’t felt awful. I woke up feeling great. I mean actually great, and that’s a common occurence after a migraine for me (and probably others.) I don’t know why, I don’t think even researchers know why, but there’s some kind of manic elation the day following the release from the grips of a migraine. I guess not everyone gets it, but I typically do.
For some reason, I am left with almost nothing to offer other than that today. So be it.
Update: This somehow got stuck among my drafts and didn’t get published like I meant to, so I can add in the detail that UPS dropped off my package at about 8:30 last night. That’s one long day for that drive. I wouldn’t have even known it was at our door had I not taken the trash out at 8:45 and found it sitting there. I know, this has been a fascinating saga for you readers.
February 5, 2008
I do. I don’t know what that’s about. I just keep getting the scent of hot dogs, or something similarly pungent and unappealing, in my nose and it worries me – I used to often pick up odd scents that didn’t exist prior to a major migraine. I haven’t had this happen in a long time, but then again, I never used to smell
wieners hot dogs. It was always something chemically, slightly almond.
On top of that, I’ve definitely had one today, albeit one of my pain-free ones. I’ll stress that while this may seem like the way to go, it is really still a rather unpleasant experience. Being “off” all day, being confused, feeling ill, not wanting to eat (seriously – I have eating nothing but, essentially, bread or grains all day; meat was a serious NO,) and the accompanying aggravation due to light and sound just isn’t fun. Sure, it beats the pain any day, but it sucks no matter what.
That said, I still managed to get in some good listening – I have found that these days I either need absolutely nothing in my ears, or I am extremely picky, and today was one of those “extremely picky” days. I found that I needed pristine sound today, and so a couple of Mobile Fidelity discs through my amazing Etymotic ER4P in-ear ‘phones fit the bill nicely. I managed to add some new content to the very lonely Lookout For Hope while I was at it. It’s still alive!
January 27, 2008
It began raining sometime last night and hasn’t let up once. Not once. It never stopped raining this entire day. I’m not exaggerating – there has not been a point in this entire day when there wasn’t water falling from the sky. That is extremely unusual. I like rain. We don’t get that much of it here in Arizona. But I like rain where it falls and makes things wet and shiny and the air smell like ozone and then it goes away, and the sun peeks out from behind the clouds. I don’t like when the day is just grey-blue. It’s miserable, and that’s kind of how the day felt. I could never make it in a place like Seattle.
Regardless, it was a productive day. I went out and got a couple of air filters for the cars and replaced both the engine and cabin air filters . . . well, I replaced my engine air filter because the one I got for Alissa’s car turned out to be the wrong one. Stupid book at Pep Boys listed two filters for her Accord. I grabbed the second one for no apparent reason and it turned out to be wrong for no apparent reason. And after all that damned work – Honda doesn’t make it easy like some other manufactures do to replace air filters. You know, a few nice clips and it pops open. No, they’ve got screws and then some screwy orientation where junk is attached that keeps the filter cover from moving. It was a job and it shouldn’t have been. I blame this on Honda’s ridiculous desire to keep owners coming back to them for service. I don’t like doing these jobs myself, but I know for $15 I can do this in 15 minutes. Sure I’ll be a mess, but it’s a lot cheaper than having them do it. As for the cabin air filter, this is always a nice service – it takes 2 minutes and is very easy, and the end result is clean, fresh air that flows a lot faster. (And, believe it or not, I ordered those filters online – it was far cheaper to order two and pay shipping than to buy both and get them locally. That’s kind of sad, but it’s reality.)
Then I hung up a couple of very clever devices. If I had any idea what they were called, I’d tell you, but I’ll just have to describe: they simply hold your handled yard tools (rakes, brooms, shovels, etc.) by pressure exerted with a little rolling wheel that moves up against the handle, so many different sizes can be handled easily. It’s a very handy way to clean up a messy bunch of tools like I have and took about 15 minutes to install. Bought ’em at Costco if you’re looking for them for about $6 (for two!)
I also installed my new CD/DVD writer tonight, which, so far hasn’t panned out at all. The drive came with a SATA data cable but unfortunately did not come with a 4-pin molex to SATA power converter cable, leaving with an unusable new drive in place of my old unusable drive, and now a second unusable drive because I messed up the heirarchy by removing the master (the old, bad drive) and didn’t make any changes to my back-up drive. Nevermind – I know this is all geek speak. Suffice it to say that I can’t do much of anything when it comes to CDs or CDRs/DVDRs until at least tomorrow evening if I get the proper converter cable. Sigh – it never ends with computers.
We took Amanda to Cold Stone Creamery last night where she got a little cup of strawberry ice cream with M&Ms mixed in. She didn’t quite get the “mix in” concept and picked out the M&Ms by hand to eat separately. She enjoyed it, however, and, as they say, it all ends up in the same place anyway. Feeling adventurous, I had my first chocolate ice cream in about 18 months last night. I got a waffle bowl with chocolate and Reese’s peanut butter cups. It was everything I hoped it would be.
For those keeping track, I’m pretty sure I can confirm that chocolate does not trigger migraines but an unusual craving may be a warning sign. Friday I came home from work with chocolate on my mind and it simply would not let me go. I avoided it and, in fact, avoided caffeine, just to see what would happen. Wouldn’t you know it, in the middle of the night I awoke to the alarming flashing of lights in my head, and later a typical, but not awful migraine ensued. No chocolate, no caffeine, but still a migraine. Eat what you want, people, it’s not food that’s causing these things. Face the likely fact that some of us are just susceptible to something, perhaps hormonal, that causes migraines, while others never get them.
Eh, I had more to say, but honestly I just want to go sit down. Today is over.
January 22, 2008
I’ve been thinking about migraines today because, well, I feel kind of crappy, unfortunately. Yesterday started out bad, got better, and then by bedtime, I started feeling weird again. Headachey and crappy feeling, but it’s not terrible. There are just days like this. You learn to live with them. Luckily I have fewer of them now than ever before.
In thinking about it, I’ve hit Google because it’s always fascinating to read other people’s experiences, such as the bizarre Alice In Wonderland syndrome, something I get from time to time (essentially, you or part of you feels out of proportion with the rest of you or the world. It is VERY strange. What I repeatedly experience is that my head feels very far away from the rest of me, and if I don’t concentrate on my hands, say, when I’m typing, they will look from the bottom of my eyes to be about two feet further away than they really are. Once I look at them they’re fine, but the sensation will return once I take my concentration away. It’s not disturbing, just weird. You get used to things like this, believe it or not.)
When I was a kid, I used to have a really strange phenomenon that repeated many nights. I would start to drift off to sleep but would find it hard to commit, and instead I would be in a state of some kind in between where a kind of static was all around me. It’s hard for me not to think of this without thinking of vomit – I never got sick, but that’s how it made me feel. It was a very rhythmic, unrelenting static/snow going on in the background of my mind and on top of it was a feeling of being pursued and panicky. If actual events were happening in it, they happened in slow motion, but very angry slow motion. For instance, if my parents were in it, they would be yelling at me at their most angry, shaking their fingers, in a rage, but it would be happening very slowly. This happened a lot, or enough to make a deep impression on me, for I still think of it often today. I may never know what the hell was going on back then. At least it doesn’t happen anymore – I think I’d be in need of some seriously psychiatric help if I still suffered these things.
January 21, 2008
Last night? Not so good. Today? Very nice.
I awoke in the middle of the night with what was clearly the beginning of a migraine. It is not a pleasant way to wake up – flashing “lights” in my vision, lights that don’t actually exist, and a panicky feeling of being out of control. There’s no pain, yet, at least. I hopped out of bed and grabbed for my Maxalt, hoping it would sufficiently snuff out the migraine before it could begin. This is the first time I’ve used this in a long, long time.
For a while, I sat and watched the light show. I tried to simply enjoy it – I’m basically getting for free what those who love psychedelic drugs pay good money for, so why not? But it’s really not all that fun – there are other weird things going on in the brain at that time and it’s just not very sensible. I don’t really recall anything at the moment, I just know that everything’s a bit confusing and, really, it’s best to just be by myself – so, in a way, the middle of the night is a good time and bed is a good place to be.
I eventually drifted off to sleep with some odd feelings going on, not really pain – and I can’t really explain this to those who don’t suffer the kind of migraines I do. I’ll try, however. I don’t necessarily get the crushing, horrible pain all the time. What I get is kind of like everything else but that. Confusion, irritation, light and sound sensitivity, and a whole host of other odd things. It’s not mild, either. It’s horrible. There’s a headache, all right, but it’s always not the kind that I’ve had where I absolutely have to be in the dark, away from sound, away from light, people, etc. It’s just extremely, extremely unpleasant. See? I told you this wasn’t going to make sense. Just trust me.
I woke with startle about 4:30 am and there it was, this strange, deep blue shape in front of me, just a blob, almost three-dimensional, very murky, with “edges” here and there in very sharp, distinct colors, like it was over-exposed. It just floated there and merged with the darkness and then reappeared in bits, some parts of it “buzzing” with color. It was at this point that I decided I simply had to get up. Laying in bed like this kind of freaked me out. After a bit, the blob was gone, and I felt okay, and, in fact, sleep was calling to me, so I crawled back in bed.
When I awoke, yep, there it was – the awful confusion I spoke about above. I don’t know what brought this one, but this is easily one of the worst ways to wake up. It starts the day in a bad way, which was really disappointing as I was home with Amanda today and really wanted to be able to have fun with her today.
And, luckily, within a few hours this morning, things really subsided and Amanda and I had fun. We hit up Borders where I took advantage of a 40% off CD sale while picking her up a Thomas the Tank Engine book, then stopped at an odd toystore that is closing and got something for her train set. It was a day of playing, and I was as bummed as she was when she needed a nap. I wish I could let insistence drive me like it drives her, but I knew that despite her claims, she really was tired, and the fact that she was sound asleep in 15 minutes proved it. That gave me some time to get some much-needed box-destroying done for the recycling, rip some CDs (at which point my CD drive died – sigh) and relax a bit.
For a rough start, it didn’t turn out so bad. I just wish I wasn’t so damned tired right now.
December 14, 2007
Today’s easy lesson: don’t eat one-year old cherry-flavored candy canes. They taste a little more like dirt. The peppermint ones are fine, but don’t eat the old cherry candy canes.
Hand/wrist/arm issue: slightly better, but the weekend will be the big test. Staying off the computer for 8 hours a day should help quite a bit. Come Monday, if there’s no significant improvement, it’s probably time to give the doctor a call.
I’ve been reading a lot about migraines and food-triggers lately, mostly because I’m absolutely sick of missing out on chocolate, one of the things I identified as a trigger. It turns out that researchers have not been able to link any food to migraines, but instead people blame foods due to post hoc ergo propter hoc, or “X happened, then Y, therefore X is at fault.” In other words, it’s a logical fallacy – we’re blaming the terrible pain of migraines on the most recent thing, when in fact it had nothing to do with it. As they said, people are very bad researchers – they don’t account for the times they had migraines without chocolate, nor the times they had chocolate without migraines. What sticks out in people’s minds are the instances where they remember eating something specific and then getting a migraine. Some researchers even suggest that food that have been called triggers may actually be cravings brought on by early migraine symptoms, and that makes a lot of sense to me – a lot more sense than some food giving me a migraine. If you want to read more, this guy has a whole lot to say about it.
His list of triggers down the page should say it all – one affliction simply cannot be triggered by so many completely different things. I do find his suggestion of caffeine as a cause of migraines to be intriguing, but I’m not sure I support it – I drink soda every day and don’t get migraines that often.
As a result, I’ve been “experimenting” with chocolate this week and I’ve been 100% fine. No headaches of any kind, let alone a migraine. It’s the first chocolate I’ve had in any real quantity since early July of 2006, believe it or not! And, yes, it’s been wonderful.
Is your Christmas shopping done? I’m very close to being done, just a few things left to get, but the important stuff is taken care of, thankfully. “Early and online” have been two tactics that have been working out well, stress-wise, for me the past couple of years. While I do feel like I’ve missed a bit of the Christmas hustle-n-bustle not being out in the stores, I’m simply not equipped to deal with the frustrations. Boxes arriving at the door is a very nice way to handle things. Now I just have to find some time to wrap things . . .
July 16, 2007
After just over a year on “Dopamax” (I use its nickname here to try to avoid the spam-bots from tagging me like they love to do when you mention a drug by name – Google it and you’ll see what it is) and successfully avoiding migraines for quite a long time, my neurologist and I have decided to try and get me off of this crap. I’ve been doing so for the past month and a half, slowly moving down in dosage one pill at a time to see if lower doses allow the migraines to creep back in. So far, so good. I think most of my migraines were food-related, a realization that is both comforting and sad at the same time. Comforting because it’s therefore easy to avoid migraines – avoid the food that seemed to cause them (chocolate and cheddar cheese – believe it or not, I ate way more of both of these than I realized on a regular basis.) Sad because, well, it’s pretty obvious why – I love chocolate and cheddar cheese. But if that’s what keeps migraines and daily headaches away, fine, I’ll do without.
I must also throw in here the issue of allergies. My neurologist suggested from the start that out-of-control allergies could set off migraines, so getting started on a serious treatment program is sure to have had a big effect on my headache issues. I’m two months into a several-year long treatment by way of injections. At the end of that time, I’ll be far more resistant to the annoying things that set off sinus headaches and possibly what caused a lot of migraine problems. I’m absolutely stunned at how happily I will offer up my arms twice a week for a shot in each one.
However, as I’m coming off of Dopamax, I’m now starting on something some call “Morontin” (again, Google it.) I’ve had a nagging issue with my right arm for a couple of years now, something that has finally gotten to the point that I had to ask about it. Simply put, my pinky and ring finger, along with the portion of my palm attached to them, go numb during the night. This is not normal under any circumstances. It’s a condition called ulnar nerve neuropathy. Nearly every night, I will awake with either those to fingers completely, totally numb, or tingling as if I’d just had them in freezing cold water. Neither is a particularly pleasant sensation, and it wakes me up at least once a night, sometimes several times a night, and very rare is the morning that I wake up without those finger being numb and slowly over the next hour regaining their normal sensations.
My neurologist sent me for nerve conduction testing a couple of weeks ago. This was fun. Oh, it was fine at first – just some electrodes taped onto various spots on my hand and arm – but when no results came up, it was time for needles. Needles in muscles. Most were bearable, a couple were almost completely unnoticeable, but two were absolutely awful: the one going into the side of my palm and the one going into that big fleshy part on the palm by the thumb. The latter, actually, was excruciating. I have distinct, sharp memories of feeling the needle poke through my skin and then resist going further at the muscle until the technician gave the needle several short, sharp shoves. And then it just hurt constantly while she made me move my thumb against her hand for resistance. All that for absolutely no results – and that’s what my doctor expected would be the result! (To explain, he said that it’s possible that at this point only a small number of nerve fibers have been affected, and they may be in a position that the tests can’t reveal anything yet. I didn’t think to ask if this meant that someday I could look forward to more nerve testing.)
So, in lieu of surgery, because whatever is going on is just not bad enough right now, I’m on a drug that should hopefully eliminate some of the nighttime numbness and waking episodes. So far, three days into it, absolutely nothing has happened. I still wake up numb, but now I wake up numb and groggy. Fun. And, as luck would have it, in trying to get away from some of the side effects of Dopamax, like making me forgetful, I’m now on a drug that is also blessed with the same damned side effect, only it seems to make me aggressively dumb. Before I could kind of predict what I would forget, but with Morontin, it’s completely random. Example: I went out yesterday to hit a pool store for supplies (oh, yeah – we bought a “cheap” above-ground pool – more on that later!) and Zia for musical supplies. By the time I got half way down the road, I knew I was going to a pool store, but not why or, more accurately, what for. After I got there, it started to clear up, but I couldn’t help but walk around and wonder if I was forgetting something vital. When I left, I had no idea if I had something else to do besides Zia – but at least I had my priorities straight, right? So part of me is hoping that this drug just isn’t going to work and I can get off of it soon and just be drug-free (besides my allergy stuff, can’t live without that.) I don’t know what the solution is, or even what the situation itself is, but some good has to come from all of this, right?
May 28, 2007
A rose by any other name Favorite things becomes my much-abused Various and sundry this week. Why didn’t I think of that before?
Cheap stuff Man, this is awesome: Costco has the 5-disc, 12-hour HBO special on the 1960s space program, From The Earth To The Moon, for a “whopping” $21.99. That’s $5.40 a disc. You cannot beat that – it’s not even that cheap used on Amazon. Too bad I didn’t learn about this until after we’d already made our big trip there – and so had to make a special one-item-only trip and endure The Lines just for this. It was worth it. (And, yeah, I’m aware that Discovery Science is airing the episodes. I don’t want the episodes. I want the whole series and the extras, dammit.)
Wax on, wax off I spent most of Memorial Day waxing my truck, after having spent part of the Sunday afternoon prior to that claying the truck with my newly purchased Clay Magic kit. You may remember some mention of claying in a previous post in which I purchased Turtle Wax’s new Liquid Clay Bar. Well, I gave that a try on Alissa’s car, got as far as the hood with that, and changed the name from “Clay Bar” to something that begins with “s” and sound suspiciously like “hit.” I dug out my old Clay Magic bar and went to work and in about the same time that it took me to do the damned hood had the whole car clayed and, as it should, it felt like glass once waxed. I have come to realize that trucks are always more difficult to deal with when cleaning, requiring about double the amount of time and energy, so it came as no surprise that my Ridgeline took far longer. The results, however, were much the same – the finish is amazingly smooth. Seriously, if you love your car, do it and yourself a favor and give it a claying once a year. You will reap rewards come time to sell it – people freak out at how well paint gets taken care of when you do this. It removes all the damage that the sun and the chemicals from the road can do to your paint. It obviously can’t fix paint damage, but it seems to ward off fading completely – four years on and the paint on Alissa’s Accord looks just like it did the day we picked it up.
Ain’t that a kick in the head When I wasn’t waxing my truck, we took Amanda to Arrowhead mall today to check out their play area. We’re coming up on the last weekend of her Little Gym classes (whew) and she’s going to need something indoors to burn off some energy on weekends, and our house just isn’t going to suffice. We were hoping this might do in a pinch and it seems it might, but I wasn’t too thrilled with the “clientèle,” I guess you would call it. Sure, security swooped in to kick out the kids who were obviously far too old to be in there, but he didn’t stop the idiot kid from jumping off the faux-firetruck, hitting Amanda in the head as he did so. Luckily he only grazed her, but it could have been much worse: my daughter’s first enemy may have had to feel my wrath.
Speaking of pricks . . . I finally begin my long treatment for allergies with twice-weekly shots for the next few months, which then goes down to a slightly less intensive schedule and gradually lessens over time for the next few years. It sounds tedious and it probably is, but with as awful as my allergies generally treat me (migraines, infections, etc.) it’s likely going to be worth it. Since I’ve been on some serious allergy medicine, things have been pretty good. Not perfect, but good. But I don’t want to be on medication forever, so the shots are the best way to get around that. I hate needles, but I think this is actually going to be worth that – and that’s saying a lot.
And speaking of medication I’ve got a meeting with Dr. Brain next week to hopefully start weening myself off of my migraine medicine. I’ve come to the conclusion that most of my migraines were from a few strategic foods that, unfortunately, I really, really love, but that I’ve basically given up and since then I really haven’t had any significant problems. I hate saying it, but chocolate and cheddar cheese are things of my past and, in the case of chocolate, that’s really hard to deal with. I’m sure there’s a threshold that will allow me to eat some, but I don’t really like tempting fate right now. I have learned one thing and that is that things labeled “chocolate flavor” are not really chocolate and so are basically safe, for whatever reason. There must be some vital ingredient missing. I don’t know what, but I sure wish I did. Anyway, it will be nice to get off of this drug – it makes me forgetful, most of all, such as spelling words I’ve always known how to spell, or forgetting words just as I’m about to say them, but most embarassingly is that it often prevents me from remembering people’s names, even people I see every day. Very, very frustrating – I have that “tip of the tongue” feeling much of the time, know what I want to say, but just can’t say it. I’d also like soda to go back to tasting normal again. I’ve learned to deal with it but the day when the drug is out of my system and soda tastes delicious again will be wonderful.
Lost for words Remember what I said a couple weeks ago about missing out on Lost? Man, anyone that was a fan and dropped out seriously missed out on one of THE BEST season finales of ALL TIME. Rent/buy this season when it comes out and catch up.
Bad influence One of Amanda’s favorite books has a picture of an ice skater that I found particularly dorky. For a while when Amanda would point at it I would say, “Geek.” Now Amanda points at it and calls the ice skater “Geek.” Oops.
Fakation I’m utilizing the power of a holiday to maximize my time-off savings, so I’ve taken the next four days off for a fake-vacation or, as you’ve guessed it, a “fakation.” It’s an Al Bundy vacation – I’m not going anywhere, I’m not doing anything special, just staying home and hanging out with my little girl (when I’m not destroying faucets or repainting parts of the house, that is,) but, unlike Al, I’ll probably be doing some home-fixin’ things that aren’t particularly vacationary in nature, but, hey, at least it’s not work.