Wednesday, August 31, 2011

Rude much?

There's something inherently very, very wrong with this situation. I actually had a number of days after the last set of ER visits where my pain was actually pretty darn manageable by the meds on hand. Coincidentally, most of those days occurred while I was down at the parents, trying to give Eden little time to herself to where she didn't have to spent the bulk of her effort either taking care of me or avoiding aggravating my pain with excessive light or noise. Unfortunately, things started peaking again during the ride back up to Portland, and seem to have come to a head again as of last night.

Oddly enough, during the day time yesterday, things were pretty good - I actually did perhaps 70% of the driving on the way to and from Newport (darn near unheard of, and we had a blast at the Aquarium, thanks to a Groupon we'd purchased months ago that was about to expire), and was in very good spirits the whole way; I could feel the edges of discomfort, but it was largely masked by my meds. Then as the cars started flipping on their lights at dusk, things rapidly degraded, to the point where Eden actually had to ask me to pull over and change drivers, since I had steadily been putting more and more of my brainpower on "pushing" against the pain half-consciously, and was essentially driving on full auto-pilot. I spent the bulk of last night getting up every few hours to treat the pain to get to the point where I could at least stand to lie there in the dark listening to podcasts. Of course now I'm back in the garage, hiding from the light, which is a bit annoying, as I had hoped to spend a good portion of the day utilizing the processing power of my desktop to actually catch up a bit on photos for once.

I guess that's really the theme here, for me. As painful as this all is, mentally it's more annoying than anything, for a number of reasons. I think the most prominent bit is that it completely messes with my self-identity. For the longest time I've kind of defined myself as "Smart, but not wise...", and have been able to hold a bit of pride in that definition. By this I mean that I'm clever, quick, and a good problem solver, but with my memory issues, etc, I just don't have a whole lot of past experience to draw on. Tests and such have always been easy, and people are generally impressed with me, once they have a few hours of exposure. For all of that, I have the common sense of a rock, and I've learned to deal with that, and try to react with a healthy sense of humor when it's pointed out (or I manage to point it out myself through accident or action).

That intelligence is largely gone during these attacks, or at least is effectively masked - either the pain, pressure, and dizziness occupy so much of my attention that I'm just too bloody slow to keep up, or the meds that somewhat block those symptoms make it a monumental effort to think at all, or some combination of the two, all the time. I spend a horrible amount of effort just trying to hold together to do the simplest things, and of course my time in school is hampered to say the least. It's a major portion of the reason that I'm taking this next semester off from school to hopefully get a better grip on controlling these issues, as well as the thought that the funds for that semester would be largely wasted with the amount of attention I'm currently able to bring to bear.

On the plus side, I'm down to roughly 24.5 hours until I see the Neurologist for the first time, so my spirits aren't quite as low as they might otherwise be; in point of fact, I'm really quite excited about where that might lead. For the moment, however, I'm just vexed that my time for useful and intelligent discourse with my wife, and for possibly getting out to see friends for a while, has been curtailed again. Ah well, I guess we'll see what the morrow has to bring.

- J

Thursday, August 25, 2011

Where we're at...

It's been a very long time since I've updated this blog, but I haven't forgotten about it.

Unfortunately, the last several months have continued the ongoing trend of headaches and associated symptoms getting worse. I intend to do at least a couple of summary posts for the intervening time, once the photos are done processing, so this is more of a catch up for folks that have been asking after me, as there have been many since I slipped under the radar.

In a way, those photos are something of an accurate barometer for how things have been going - I've been shooting fairly regularly, or at least was up until a month or so ago, because I've found photography to be an immersive distraction in addition to all of the other charms of the hobby - often I'll take the current regimen of pills for a migraine spike and head out to find something to shoot while waiting for them to kick in - at the least, the perception of the time between taking the pills and noticing that I'm getting some relief shortens, even if the actual time doesn't. Contrary-wise, processing those photos later on isn't quite as distracting, and the dizziness and nausea that have become pervasive have severely curtailed how long I'm able to sit upright at the desktop, to the point where I've got a backlog of slightly more than 3 months of photos to work through. I've actually just gotten to the point of copying everything back to a portable drive so that I can work on them on the netbook, which is horribly slow, processing-wise, but I'm at least back to making some progress. I've just finished geotagging all of them (digitally marking the location where the pictures were taken), and that took a day and half all by itself.

In any case, there have been a couple of mis-steps and frustrations along the way. It turns out that the initial dose that my nurse practitioner prescribed me as a rescue medication (to be taken at the onset of an attack to stop development) for my migraine was laughably low due to mis-typing - I'm currently getting intermittent mediocre relief at four times that dose. The first anti-depressant that the VA started me on (Amitriptyline) wasn't terribly effective for either the migraines, nor the depression, so we moved on to a different anti-depressant (Venlafaxine). On the plus side, that seems to be working very well for depression, although it leaves me with a rather strange disconnected feeling, as my emotions don't match up with my logic right now; I can consciously see that I should be far more upset and concerned for my situation than I actually am - it's a truly perverse feeling.

Unfortunately, swapping anti-depressants meant that I needed a new daily maintenance medication to try to stave off migraines from even starting. My nurse practitioner selected Topirimate for this, which is an anti-seizure medicine that's been shown to have some positive effects in migraine patients as well. Not so much for me. A few days after I started taking it, my symptoms went through the roof, especially the nausea and dizziness, to the point where I couldn't keep my pills down for more than 20 minutes each day, and I lost nearly 10% of my body mass in a little over a month (I'm currently at 213.6 lbs as compared to 237.0 lbs when I started the medication) due to simply not being able to obtain enough calories (trust me, I wasn't losing weight to exercise!) On top of all that, I also was hyper-prone to motion sickness for the duration - Eden, Cassie, and Nick decided to take me out to the Gorge to try and relax a bit and get out of the house for a while, but we ended up having to pull over every five minutes the whole way there and back. That theme repeated of course every time I left the house, which rapidly became only the occasions when I had an appointment at the VA, and I'm afraid a few of those sessions were cut short by me having to run to the bathroom to regurgitate.

I alerted my NP (I'm going to go to using this as a contraction, since I don't want to name names here and have to defend truth vs. libel) to these changes, of course, and her solution was to have me take a suppository for nausea as soon as I felt the symptoms, without any investigation into why I was having them. Great theory, I guess, except that even those take about 45 minutes to kick in, and didn't do much more than make it impossible to stand up, and I usually only managed to keep my normal pills in me for 10-15 minutes - not enough to absorb much at all.

I should stop here for a second and mention that I've been "seeing" my NP for nearly 7 months now, and have only spoken to her for perhaps 45 minutes total since that time, most of which were during my intake interview. Trying to get ahold of her usually means calling the clinic's front desk, waiting an hour or two, then getting a call back from her assistant, Carol. I'd then pass on my symptoms to her, which would invariably lead to a message being passed back some hours later that my NP would consult with some other doctor and get back to me; rarely have I heard back from her after that point without further follow ups.

Basically, I'm left feeling like I'm left dealing with a secretary's assistant - she doesn't know what she's doing (the NP, not her assistant - Carol is fabulous), can't make a decision on her own, isn't responsive to my requests for more diagnostics (so far all I've had was some initial bloodwork and a urinalysis) or direct referrals to a specialist, rarely follows up, and on top of all that, I'm playing the old kindergarten game of telephone, where my messages have to get passed through multiple people on the way to the people making decisions about me, and are undoubtedly getting muddled along the way. Case in point: the Topirimate - minimal research on the web indicates that approximately 16% (nearly 1/6th) of patients react to it the with the same unbelievable nausea and dizziness. Now, to be clear, I'm not blaming the NP for not knowing that I would be reactive in this way - I'm blaming her for not knowing that this reaction was a high likelihood. Seriously, if you're going to be messing with another person's body in any way, be familiar with your tools!

I stopped taking the Topirimate almost three weeks ago, and the nausea has calmed down significantly (save for a nasty two day span after accidentally ingesting one more dose - apparently I missed removing one of the pills from my week-long pillbox). Right now I'm really only getting severe nausea that directly correlates with the timing of the more severe pain spikes, so I'm thinking it's just a direct reaction to the level of the pain. Now the funny thing is, I passed messages to my NP via several routes (including through my psychiatrist, psychologist, and an ER doc) to alert her to this and still haven't gotten a response back, beyond the very quick conversation I had with Carol last week prior to an ER visit, when she inquired as to how the medication was working for me, and was very surprised that I wasn't still taking them. I forget the other portions of her response, but "just because you send messages to her doesn't mean she reads them" is a direct quote. Unacceptable.

Enough about the NP for now - we'll get back to that subject, but lets continue chronologically for the time being. As I said, intensity and duration have continued to climb, and the onset has become much more abrupt, to the point that I very rarely drive any more, even during the few times that I feel ok enough to do so, just because I don't really feel safe about it. The few times that I've had to drive by myself invariably lead to additional hours of pain, just from having to push myself hard to hold together.

Back on June 24th, I finally got so fed up with the whole mess that I may have gone a little nuts, in retrospect. It's always been passed around that exercise keeps you healthier, so I decided to just grit my teeth and go out for a bike ride regardless of pain. Didn't work so well - I was hurting pretty good after only a mile or so, and at that point it became a three-way tug of war between pain, willpower, and the pain-blunting endorphins from pushing hard. I'm not exactly sure, at this point, why I decided to keep on going, other than the fact that a one mile ride isn't much to brag about, even if you're only bragging to yourself. In the end, I landed on Pat's doorstep after a pretty twisty route, biking roughly 23.2 miles (as charted by Google maps) when I hadn't biked at all in at least two years. Surprisingly, I didn't feel that bad at all during the next few days (other than semi-normal migraines - no ache or strain of muscles).

On June 28th, however, things were not so good. I'd just gotten home from picking up Cassie at work (one of my rare driving days), when an abrupt, burning, stabbing pain blossomed in the middle of my chest, and rapidly grew to an absolutely agonizing level. I had no idea what was going on, but both Eden and I were a bit worried about a possible heart issue, so I tried to be responsible and just threw on my blood pressure cuff to make sure that things looked right. Of course the numbers were pretty high, so I laid down, and waited out 15 more excruciating minutes before checking again - higher still (in retrospect, almost definitely in response to the pain). Eden and Cassie threw me in the car and we ran like a bat out of hell for the Vancouver VA facility as I tried to call ahead. Unfortunately, the VA phone system had no way for me to connect with the ER department, nor did it indicate that there wasn't an ER department at any other local branch besides the downtown Portland one, so we didn't find out that the Vancouver facility wouldn't do us any good until we actually arrived there.

Having struck out and with me still being in massive amounts of pain, Eden and Cassie made the snap decision to take me to the Southwest Washington ER, where the staff were very friendly, competent, and helpful. At this point, I was getting tingly in the extremities and nasty nauseous and dizzy. End result: no perceptible cardiac event, with the secondary symptoms likely being psycho-somatic. Operating theory is that I strained something during my bike ride on Friday and somehow massively aggravated that. Add that to my very first panic attack (or at least that's what the doctors are labeling it), and you've got a recipe for fun. In any case, I was seen, processed, and discharged in only about 2.5 hours - easily one of the shorter times I've ever been in the hospital, either for myself or others. On the plus side, I was attended by the absolute hottest male doctor and hottest male nurse ever, so the girls had some eye candy to keep them amused. Seriously - hot enough to make me consider switching teams... Bonus points: The initial mental and physical exams for my disability claim were the following day, so I'm guessing my stats were more than a little off.

On that Friday, July 1st, the same horrible chest pain came back, so I called in to my NP to see what I could do. Two hours later, her assistant called to direct me to the VA ER in Portland. End result again: nothing, although I did have an incredibly rapid and curious sensation of relief when they took a half dozen vials of blood out of me for testing - I actually asked the doc what they had given me (since I was being interviewed for history and symptoms, I wasn't really paying attention to the phlebotomist) and was incredibly surprised to learn that they hadn't given me a thing. I'm thinking that maybe this is a blood pressure thing, but who knows, since again, I've got no follow up whatsoever from my NP, even though I'm now up to a bit more than a dozen instances lasting between 5 minutes to an hour or so each. If it was a strain thing (from folding clothes that day) or another panic attack (which I don't think it was; the first yes, but all of the others haven't had the tingling and blurry vision, etc), many of those instances have happened where I'm literally just sitting down in a chair or lying on the bed, so I don't know what might have triggered the recurrence.

The remainder of July was fairly sedentary - mostly just working the Topirimate out of my system, figuring out how to survive without any income, and working on pushing my disability case forward. We've applied for food stamps (so much for pride, but whatever), but are still waiting on the department to process our application (every darn time I call or go down in person they say it'll only be another 24-48 hours). Oh well, it'll come through eventually. Part of the disability claim has been gathering affidavits from people that have been around me to attest to the progress of my condition, since my medical coverage (and thus medical records) in the time since I've left the Navy have been spotty at best. If you're interested enough to have read this far down in what's becoming a massive post, you might be inclined to read through them, as my friends and family seem to be more articulate than I about exactly how my condition is affecting me. Honestly, part of my frustration at this point comes from the people that I don't get a chance to see that often, who somehow manage to miss the worst of it and seem more prone to encourage me to just ignore it and get on with my life. Believe me folks, I would if I could. My immediate family did catch a glimpse of it back at Christmas of last year during our final days in Minnesota and during the trip back, but that level has become the new baseline pain, now. Here are are links to scans of the affidavits (with personal info redacted), including my own.

Josh Abe Cassie Dorian Eden1 Eden2 Josh Jon Louis Nichole Suzanne Walter

Right now I've been getting a migraine literally every day for at least 8-12 hours, which is not good, as it seems like my body is getting less and less responsive to the medications, or the symptoms are getting worse (hard to tell which). I did get nearly a day and a half "off" during our annual camping trip with friends at the end of July, but at this point "off" is coming to mean that the migraines are actually fairly well covered by medication, rather that actually not having one, and that was only a day and a half out of a four day trip. Still, I had most of the Topirimate out of my system at that point, so I was able to deal with the ride down to Timothy Lake fairly comfortably with the aid of some Dramamine, and camping itself was a blast (first camping trip of the year so far, when Eden and I habitually camp all summer - darn those missing finances...)

On the 15th of August I started one of my favorite instances ever - the unbroken migraine. I tend to only get multi-day migraines every two or three months, and usually I'm able to get help in breaking them with a shot of Toradol. I assumed that it would be a relatively simple matter to get a shot from my clinic at the same time as I went in to see my psychologist (who will be moving on to another site soon - dangit!), so I called in as soon as it was light, after 56 hours of unbroken pain. Now, I should point out that Toradol is not a controlled substance, has no perceptible effects other than migraine relief and a very nasty burning sensation at the injection site, so this shouldn't have been a big deal.

Come to find out, the clinic can't give a shot (and might not even have it - they weren't sure) without my primary physician's approval (the NP, again). In this case, she had actually read the note, apparently, but in turn simply added a line to my case notes indicating that she would talk to me about getting the shot during the next scheduled phone session in late September. Keep in mind, I've been wavering between an 8 and a 9 on the 10 point pain scale for more than two days already, and A. she wants me to wait more than a month for relief, B. she doesn't even respond directly to me, nor in any other way than updating her notes with a single sentence.

Fortunately, while my psychiatrist couldn't prescribe the Toradol, she could send me on my way back to the ER, and even called ahead to let them know that I was coming (man I love her). Four and a half hours later, I had the Toradol in me, and the pain was at least a little dimmed (down to a 5 or 6), so I was discharged.

Unfortunately, even that level of relief didn't last more than 8 hours or so. Since it still wasn't broken, or even really perceptibly diminished, I caught a ride back to the ER with the girls as they went to set up for market on Sunday morning. I was beginning to get fairly scared, as was the rest of the family, as all of my secondary symptoms of dizziness, nausea, aura, and sensitivity to light were all off of the charts for the duration. I'd basically been spending the last couple of days just lying in the dark on a couple of sleeping bags in the garage, as that is the location with the best light seal in the house. The pain and lack of sleep (other than 20 minute spans of ultra vivid apocalypse scenes) for days on end were really not helping my thought processes; I kept on noticing that I was thinking some very out of character utterly despondent thoughts. Not good.

No help at all from the Toradol cocktail this time - pain wasn't even perceptibly diminished, but they still discharged me after adding a Phenergan shot in the other cheek, apparently hoping that they'd eventually kick in. On top of this, there's something epically screwed up about getting bitched out by the ER doc for ending up back in the ER for migraine instead of getting to a Neurologist and getting your head fixed when you've already requested to change your primary provider precisely because she won't refer you to someone with competence and can't seem to muster up a single erg of caring or competence of her own. I've gotten as far as having the request acknowledged by letter; my understanding at this point is that the next step will be at least a phone interview with her superior sometime soon.

Since the migraine was _still_ unbroken, I was directed to follow up with my primary care provider on Monday, which I did, first thing. 2 hours later, I get a call back from Carol, relaying that my NP has said "there's nothing more that we can do for you" and that I should go back to the ER. I don't have adequate words for how frustrated that made me feel, since the ER had used that exact same phrase the night before. Not the best choice, I think, to be using with someone who can't seem to keep from vomiting up his antidepressants, among other things. I'm just sayin.

All that aside, however, Monday's ER visit was actually fruitful, as the doc added an anti-histamine to the Toradol mix (along with a couple of other things - I don't recall the names of all of them, but I do know there were 5 different medicines in there). I actually managed to sleep for an hour or so while in the ER, which is a new thing for me.

Since then, I seem to have gone back to my normal daily migraine cycle, or actually a bit lower on the pain, thanks to the additional pills the ER doc gave me to continue the regimen for a while. Still getting some nasty spikes, but I'm actually getting 4-5 hours of sleep a night and I'm able to focus well enough to get a few things done (like this post, which I've been meaning to do for months). Frankly, it's a little scary that my current levels of sleep and pain feel absolutely luxurious in comparison to how I've been, even though I was at this same level only a few months before. There aren't many of those pills left, but I think I'll be able to make them last nearly until my appointment with the Neurologist on Thursday (the ER doc made the referral, since my NP wouldn't).

Really all I'm hoping for is to be able to work with the specialist to try and figure out the basic cause of all of this (anatomically - I know that my toxin exposure is almost definitely the initial cause for this, but what I'm looking for is what that exposure changed about my body that is resulting in this pain). Specifically, I'd like to get some imaging done to make sure that there aren't any unknown growths going on (since others who have been exposed have developed cancers, among other things), and a comprehensive allergy test, to make sure that I haven't been sensitized to something common in my food or environment (I haven't been able to locate any food triggers other than artificial sweeteners on my own, and I'm religious about dodging those). I also wouldn't mind whatever examination would be appropriate for determining if my sinuses are screwed up, since I seem to be reactive to pressure differentials, such as severe weather.

Bottom line, if I had a handle on what's going on, I'd be a whole lot better immediately - I don't feel like I have control over my own life, or even really have a life, now. Not good for a control freak such as myself. Tremendous amounts of my depression revolve around the thought that this will remain a mystery and simply keep on getting worse and worse until my head simply pops.

Contrarywise, if either our food stamps were issued or the initial disability decision was made, I could at least take those stressors off of my plate - 0 income and being functionally unemployable isn't working for us.

Right now, I'm staying with my parents in Philomath for the next few days to give my loving wife and eternal caregiver, Eden, a bit of time off, as I've been unavoidably needy for the duration, and to allow her to have a place to live with light for a while.

So yeah - that's what I'm up to. More later.

- J

Spare thoughts -
This whole trek has given me a lot of excuses to figure out what works for me when migraines hit - if you suffer from migraines, nausea, or light sensitivity, or know someone that does, take a look at these utilities and products:
For your PC, "DimScreen" will allow you to dim your screen programatically, in addition to the brightness level of your graphics card - this means that you can make things extremely dim by using both controls. A note, however - the percentage indicated by this utility is how much it will decrease brightness by; IE 0% is full brightness and 90% is 10% as bright as full brightness.
For your iphone or ipad, "Dimmer" will allow you to dim the screen much further than the normal brightness control. This does have to be on a jailbroken device, however, as the utility comes through Cydia.
For your belly, I find "Tripple Ginger Snaps" and "Ginger Chews" from Trader Joes, as well as "Ginger-Os" and "Organic Ginger Mints" from Newman's Own are simply wonderful for settling your stomach, and functionally far superior to the candied ginger you can get pretty much anywhere.