Oh my - I've managed to let this blog go by the wayside for way, way too long. I'm going to accept the self-imposed guilt trip on this one and just state for the record that there will be a catch up post sometime soon. I just wanted to share a note that I sent off to my VA docs yesterday with all of you, because the very first question I get in any conversation is: "How are you doing lately?"
In short, I'm doing a lot better - not sure how stable the better is yet, but definitely, measurably better. Also, for those of you whom I haven't spoken to yet on the subject, yes, I do use medical grade marijuana (legally, I have the papers and all that) as an adjunct for pain control. I want to go into this in detail later, since I think it's an incredibly useful tool, but the short version, since many of you will be voting on some form of marijuana bill tomorrow, is that yes, it is an incredibly effective tool for management of pain, nausea, anxiety, and depression, as well as a myriad of other disorders. I hope that you'll join me in voting to legalize use in whatever form your state has on the bill - if nothing else, giving illegal drug trafficking a widespread, legal, and taxed price competitor can only improve the overall crime rates in your area.
(If you are a user for this purpose, or are considering obtaining a card, the first thing you should ask your grower is what strains s/he has available, what the approximate proportions of the three major marijuana strains this is derived from [neglecting any positive mutations, etc in the inter-veining generations], and what disorders each strain has shown efficacy for - if they can't answer these questions or at least point you to one of several very good databases online for this kind of thing, thank them for their time and call another grower - my current provider here in Vancouver, ReLeaf is quite good about this; had a well prepared binder with histories, symptoms, and graphs as appropriate for each strain - in fact, due to a quirk in the local laws, they're actually required to deliver direct to you, as it is not legal to have a dispensary building within Clark County.) Personally, I find that I tend to have the best results and require the lowest dosages with indica dominant strains (tends to make you feel distant and passive) as opposed to sativa strains (tends to make you "high" and hungry). I'm still experimenting with new strains as they become available, since the highest mix I've been able to find was 70/30 and is no longer available to me; I'd love to compare a near pure strain for efficacy. One option that I brought up with my grower right off the bat was a well-labeled "variety" pack of what strains he had available, rather than buying a straight 1/8th, etc of one strain. He was completely helpful and understanding in this respect (he, of course, is also a medmar patient due to a past trauma - car accident, I believe). It can't hurt to ask for a similar deal yourself when you're getting into this to figure out what works.
Anyway, back to the meat of the post - here's what I had the privilege of sending off to my docs yesterday morning:
Oh my - I've managed to let this blog go by the wayside for way, way
too long. I'm going to accept the self-imposed guilt trip on this one
and just state for the record that there will be a catch up post
sometime soon. I just wanted to share a note that I sent off to my VA
docs yesterday with all of you, because the very first question I get in
any conversation is: "How are you doing lately?"
In
short, I'm doing a lot better - not sure how stable the better is yet,
but definitely, measurably better. Also, for those of you whom I
haven't spoken to yet on the subject, yes, I do use medical grade
marijuana (legally, I have the papers and all that) as an adjunct for
pain control. I want to go into this in detail later, since I think
it's an incredibly useful tool, but the short version, since many of you
will be voting on some form of marijuana bill tomorrow, is that yes, it
is an incredibly effective tool for management of pain, nausea,
anxiety, and depression, as well as a myriad of other disorders. I hope
that you'll join me in voting to legalize use in whatever form your
state has on the bill - if nothing else, giving illegal drug trafficking
a widespread, legal, and taxed price competitor can only improve the
overall crime rates in your area.
(If you are a user for
this purpose, or are considering obtaining a card, the first thing you
should ask your grower is what strains s/he has available, what the
approximate proportions of the three major marijuana strains this is
derived from [neglecting any positive mutations, etc in the
inter-veining generations], and what disorders each strain has shown
efficacy for - if they can't answer these questions or at least point
you to one of several very good databases online for this kind of thing,
thank them for their time and call another grower - my current provider
here in Vancouver, ReLeaf,
is quite good about this; had a well prepared binder with histories,
symptoms, and graphs as appropriate for each strain - in fact, due to a
quirk in the local laws, they're actually required to deliver direct to
you, as it is not legal to have a dispensary building within Clark
County, so you really can't beat them, IMHO) Personally, I find that I tend to have the best results with
indica dominant strains (tends to make you feel distant and passive) as
opposed to sativa strains (tends to make you "high" and hungry). I'm
still experimenting with new strains as they become available, since the
highest mix I've been able to find was 70/30 and is no longer available
to me; I'd love to compare a near pure strain for efficacy.
Anyway, back to the meat of the post - here's what I had the privledge of sending off to my docs yesterday morning:
Good morning all! I am writing this note to report on some new changes that I have experienced recently, to ensure that the subjects therein do not slip my mind during my one on one sessions with each of you, and to be sure that my team is coordinated in terms of strategy going forward; with that in mind, please be sure that a copy of this correspondence reaches Dr. XXXXX, Dr. XXXXX, and Dr. XXXXX.
Firstly, I am overwhelmingly pleased to report that we may have found at least the start of a meds mix (the new cyproheptadine) that shows promise in bringing my symptoms down to a level that is much more survivable from day to day. I must firstly admit, however, that there is an additional variable outside of the VA system that may or may not be relevant, in that my father-in-law convinced me to spend a couple of sessions with his chiropractor in the hopes that she might be able to provide some additional insight and relief. While I did this more or less to humor him, having previously mentally classified chiropractics as a sort of voodoo science, its hard to argue with my current results as well as the deterioration shown via X-rays produced by her office. If someone will point me in the direction of the correct forms, I'm more than willing to authorize your access to my records there.
I began seeing Dr. Bobbie on an average of twice weekly about six weeks ago, one week prior to starting my new medication. Since it is unclear, chronologically, how much her treatments have helped, and how much is due to new medication, I have elected to take at least a month off from seeing her to reduce the number of variables we must consider and to provide a long enough sample of time that we might be able to weight her contributions appropriately. My last session with her was this past Monday and I do not have any follow ups scheduled at this point. As this decision is also in part motivated by the out of pocket cost in seeing someone outside the VA system, it may be appropriate to discuss seeing a chiropractor within the system, or to have her bill the VA for her services; this is something to discuss later, when we have a longer sample of time without her sessions.
As to recent changes in symptoms over the past month or so, I am thrilled to say that I have been having appreciably less pain over less time per day, in terms of migraine, as well as actually having a few days mixed in with almost no pain at all (whereas my previous level has allowed for a glorious day "off" of pain perhaps once every three to four months). I have gone from sessions lasting 6-8 hours a day (and sometimes multiple sessions per day) with pain capping in the 6-8.5 pain scale range on average to maybe 3 or 4 hour sessions that range from 4-7 on the scale. My allotted dosage of Amerge/naproxen 3 times a week (so as to avoid liver damage) has been perceptibly more effective, even going so far as to effectively abort on oncoming burst occasionally, rather than just dull the pain somewhat without clouding my judgment, which, as I have previously mentioned, had relegated my usage to "saving" those three doses a week for the times when I absolutely need to be coherent or have no choice but to drive myself somewhere.
The level of marijuana use that has been necessary to bring the pain down to a bearable level outside of the Amerge applications has also gone down tremendously, going from needing 3-4 sessions with the water pipe over the span of an attack to only 1 or 2, and allowing me to at least occasionally use a vaporizer instead if the onset is slower. In short, I'm spending more time coherent, and less time absolutely miserable, which has done wonders for giving me hope that I might be returning to the possibility of having a central focus outside of my illness.
On the other hand, there do appear to be some side effects, some of which may be due to the medicine's interaction, and some that may just be psychological, or perhaps a mix of the two.
The first of these is the fact that I seem to be stuck in an almost hyper/manic state, needing to constantly get things done and keep moving - I'd suspect this one is entirely due to simply having more "useable" time each day; I've gotten in the habit of trying to stuff all of the things that I need to get done into one or two hours a day, and I can't seem to consciously come out of that state. My ADHD and memory issues have also seem to have increased appreciably, leading my wife to characterize my behavior, perhaps not unjustifiably, as that of a newborn puppy. I don't want to re-introduce my ADHD meds yet as a possible way to mute these symptoms, but it's a subject that I'd like to re-visit in the new year, when the question of what is helping and what isn't is clearer.
I've also been having enormous troubles sleeping through the night; averaging somewhere in the range of 2-5 hours nightly, and have been having extremely disturbing and vivid night terrors nearly every day for the last month or so. Fortunately, my wife has been incredibly understanding and comforting during these times, but I am landing with at least a half hour of difficulty in sorting out real events from dream issues each time this happens, and on numerous occasions have had to be corrected as to what has actually been said or done after the fact (I.e. separating conversations that I've had with her in dream from ones I've had in real life). My body does seem to have adapted to the tiring effects of my various medications, it seems, and I am currently out of my Zolpidem - I'll be asking Dr. Smith for a refill when I see her in a few hours.
Finally, my skin seems to have increased immeasurably in oil production, leading to quite uncomfortable breakouts. On the other hand, my personal interactions and anxiety issues seem to be moving in a positive direction, so it's not all bad (that alone might be attributed to a change in self perception, as I am moving significantly closer to feeling like a participating member of society again).
I do want to be clear on one point; I am absolutely overjoyed at the positive changes that seem to be coming about, and if I have to spend the rest of my life as a pimply, sleepless, wound-up labradoodle to achieve even this level of pain control, I'm more than ok with it. I just want to make sure that every one is aware of what has been going on. It's possible that all of these variations are just part of the normal wiggle of my cycles (I.e. I've gone back to prodrome expressing more as dizziness and visual distortion lately, as opposed to nausea, aphasia, and lack of co-ordination/concentration), but I have hope.
As a parting thought, I'd love to start working more on my health in terms of exercise during the coming winter months, but have always been challenged when it comes to activities that amount to mindless repetition without engaging purpose; would you happen to know of a pool that might be available free or cheaply to veterans and their dependents in the Portland/Vancouver area? Until my battle with the disability board comes to fruition, the monthly stipend provided by social security disability doesn't stretch too very far when it comes to supporting two people.
Thank you for your time,
Sincerely,
Josh Byram
(503)916-9367
Tuesday, November 6, 2012
Monday, March 26, 2012
Changes
Well, that didn't go as planned... The somewhat positional post I'd been working on for a week or so has been eaten entirely by the blogspot engine (apparently this has been a known intermittent issue with the "save as draft" functionality for almost four years), and there is no backup or undo. So yeah, that's going to take a bit of work and headspace to get back on track.
In other news, it actually didn't take long at all to get scheduled for the pain management clinic; my first appointment is on the 11th of next month, contrary to my initial expectations of several months' wait. Turns out its a good thing, too. Last Thursday and Friday were almost entirely pain free, which is just bloody unheard of for me (and lead to the cautious hope that having elevated my Depakote by 50% might have helped enormously), but I've had nothing but horribly nauseated rough days since then, spanning many of my daylight hours and always making nights a foggy pain-ridden nuisance at best. Hope is not quite lost, there, though, as semi-recent bloodwork showed that the effective level of Depakote in my system after 12 hours was only 27% of what is considered a minimum effective dose, due to lack of absorption or metabolism or whatever, and there's still a significant amount that the medication can be increased safely. I'll be getting the bloodwork redone on this increased dose in just over a week, so we'll see where that goes.
On a more personal note, our little family is going through a rough patch, as our eldest cat, Piranha, is having some serious digestive and bowel issues, leading to distress and massive weight loss. The thought that we may lose him soon, or even worse, have to make a decision for his comfort, is very nearly unbearable. It's hard to know what to do in these situations, and to avoid beating yourself up about whatever decisions you do make. Hopefully our next visit to the veterinarian this afternoon will help in gaining some direction.
In any case, I'll try to continue updating here as appropriate, but I'm afraid that my concentration and impetus are at a stunningly low level right now, so I'm having to take the small milestones as they come.
In other news, it actually didn't take long at all to get scheduled for the pain management clinic; my first appointment is on the 11th of next month, contrary to my initial expectations of several months' wait. Turns out its a good thing, too. Last Thursday and Friday were almost entirely pain free, which is just bloody unheard of for me (and lead to the cautious hope that having elevated my Depakote by 50% might have helped enormously), but I've had nothing but horribly nauseated rough days since then, spanning many of my daylight hours and always making nights a foggy pain-ridden nuisance at best. Hope is not quite lost, there, though, as semi-recent bloodwork showed that the effective level of Depakote in my system after 12 hours was only 27% of what is considered a minimum effective dose, due to lack of absorption or metabolism or whatever, and there's still a significant amount that the medication can be increased safely. I'll be getting the bloodwork redone on this increased dose in just over a week, so we'll see where that goes.
On a more personal note, our little family is going through a rough patch, as our eldest cat, Piranha, is having some serious digestive and bowel issues, leading to distress and massive weight loss. The thought that we may lose him soon, or even worse, have to make a decision for his comfort, is very nearly unbearable. It's hard to know what to do in these situations, and to avoid beating yourself up about whatever decisions you do make. Hopefully our next visit to the veterinarian this afternoon will help in gaining some direction.
Saturday, March 3, 2012
Tiny updates on balance
Yes, yes, I know that it's only been a week or so since I last updated this blog, and I have no realistic hope of making such frequent additions a habit, but I thought it appropriate to separate out a few personal bits of news before embarking on a broader post to follow this (which may take a few days to compose to my satisfaction, given the thoughts I'd like to share).
Firstly, I've finally received a direct response from my neurologist with regard to following up on my request for the chronic pain management program and the phone appointment that came and went without so much as a ring, as well as a few other issues - it may have taken some not-entirely-subtle hints about wanting documentation to track things down and have on hand in case alternate means of redress were necessary, but the current story as I have it is that the nursing staff had a response from my neurologist stating that he was denying my request for assignment to the program as it might cloud the results of my response to his assigned medications. Contrary-wise, the gentleman in question states that he never saw any such request, did not respond as such, and in fact thinks that it would be an awfully good idea. Obviously, there are some mixed stories here, but putting aside the question of who is to blame for the two month holdup/denial, I now have a referral to the program. In point of fact, I just received the small book-sized preliminary questionnaire to fill out today. While this is quite excellent news and encouraging, I have been advised that the wait list for the program is quite long, so it's more of a step along the way.
Another nice change is the perfectly civil response to my request to transfer my primary care to Vancouver, given that the Dr. that had been assigned to me for most of the past year had moved on (while being out of the office for almost that entire span). Bottom line, East Portland still owns my case with the duty doctor for the time being, but my reassignment is in motion, which will help a lot in terms of gas and inconvenience (especially when I'm not in a condition to drive - the Vancouver branch is within just a few miles; conceivably I could even just decide to walk it). In a way, I feel kind of bad about this - on the one hand, I'm absolutely not getting the care I need or expect (by my observation, the VA docs/nurses are composed of 65% useless human beings/35% competent saints), and on the other, I'm just not of the disposition to speak up - somehow the thought of even minorly inconveniencing someone else (and probably receiving their irritation/wrath for doing so) just isn't palatable. That said, I've been the squeaky wheel pretty much from the day that the VA staff met me - I'm sure I'm not their favorite person. Ah well, if nothing else, it helps to break me out of overly meek bad habits (used to be, I never even returned items that were sold broken or mislabeled, for the same reason, but Eden's been a big help in working through that).
I also got a chance to meet with the speech pathologist/memory specialist a couple of times. After some testing and interviewing, we've come to a full stop, of sorts. Bottom line, on my current medication, ADHD symptoms are still present, though milder. He feels that that and the escalating memory issues I've been having all come back to the increased migraines over the last couple of years, both directly, and through the associated depression and insomnia. So, the bad news is that there's not going to be much he can do to help me, but on a possibly brighter note, being able to pull that statement out of my records for the VA disability case might be useful. He's going to talk things over with my main psychiatrist, but given that I'm no longer in school/working, we've agreed that the ADHD medication may not be necessary (at least on a trial basis) right now, so we're going to try going off of it for a bit to reduce the number of variables that I need to deal with in treatment.
While I've been really suffering with the volatile weather lately (making me think that there might be some level of sinus involvement as well), Thursday was an awfully bright spot. Seems that the weather finally stabilized enough with the snow actually sticking on the ground that I got my first "day off" from pain in the last six months or so - just some relatively minor discomfort in the evening, not even enough to resort to ibuprofen. Last night, on the other hand, was epically miserable; I didn't get to sleep until 6am, and spent the hour and change that I did sleep bouncing between wakefulness and nonsensical nightmares about fighting furiously with Eden. The morning was no less agonizing, and I'm afraid that I was unsuccessful in keeping even a meager breakfast down atop the morning pills. The good news is that the pain seems to finally be leveling off for the day, and along with it my photophobia, which should mean I'll be able to spend at least a few hours tonight actually seeing my wife.
That's all for this note - lots of little things adding up in just a few days, eh?
Firstly, I've finally received a direct response from my neurologist with regard to following up on my request for the chronic pain management program and the phone appointment that came and went without so much as a ring, as well as a few other issues - it may have taken some not-entirely-subtle hints about wanting documentation to track things down and have on hand in case alternate means of redress were necessary, but the current story as I have it is that the nursing staff had a response from my neurologist stating that he was denying my request for assignment to the program as it might cloud the results of my response to his assigned medications. Contrary-wise, the gentleman in question states that he never saw any such request, did not respond as such, and in fact thinks that it would be an awfully good idea. Obviously, there are some mixed stories here, but putting aside the question of who is to blame for the two month holdup/denial, I now have a referral to the program. In point of fact, I just received the small book-sized preliminary questionnaire to fill out today. While this is quite excellent news and encouraging, I have been advised that the wait list for the program is quite long, so it's more of a step along the way.
Another nice change is the perfectly civil response to my request to transfer my primary care to Vancouver, given that the Dr. that had been assigned to me for most of the past year had moved on (while being out of the office for almost that entire span). Bottom line, East Portland still owns my case with the duty doctor for the time being, but my reassignment is in motion, which will help a lot in terms of gas and inconvenience (especially when I'm not in a condition to drive - the Vancouver branch is within just a few miles; conceivably I could even just decide to walk it). In a way, I feel kind of bad about this - on the one hand, I'm absolutely not getting the care I need or expect (by my observation, the VA docs/nurses are composed of 65% useless human beings/35% competent saints), and on the other, I'm just not of the disposition to speak up - somehow the thought of even minorly inconveniencing someone else (and probably receiving their irritation/wrath for doing so) just isn't palatable. That said, I've been the squeaky wheel pretty much from the day that the VA staff met me - I'm sure I'm not their favorite person. Ah well, if nothing else, it helps to break me out of overly meek bad habits (used to be, I never even returned items that were sold broken or mislabeled, for the same reason, but Eden's been a big help in working through that).
I also got a chance to meet with the speech pathologist/memory specialist a couple of times. After some testing and interviewing, we've come to a full stop, of sorts. Bottom line, on my current medication, ADHD symptoms are still present, though milder. He feels that that and the escalating memory issues I've been having all come back to the increased migraines over the last couple of years, both directly, and through the associated depression and insomnia. So, the bad news is that there's not going to be much he can do to help me, but on a possibly brighter note, being able to pull that statement out of my records for the VA disability case might be useful. He's going to talk things over with my main psychiatrist, but given that I'm no longer in school/working, we've agreed that the ADHD medication may not be necessary (at least on a trial basis) right now, so we're going to try going off of it for a bit to reduce the number of variables that I need to deal with in treatment.
While I've been really suffering with the volatile weather lately (making me think that there might be some level of sinus involvement as well), Thursday was an awfully bright spot. Seems that the weather finally stabilized enough with the snow actually sticking on the ground that I got my first "day off" from pain in the last six months or so - just some relatively minor discomfort in the evening, not even enough to resort to ibuprofen. Last night, on the other hand, was epically miserable; I didn't get to sleep until 6am, and spent the hour and change that I did sleep bouncing between wakefulness and nonsensical nightmares about fighting furiously with Eden. The morning was no less agonizing, and I'm afraid that I was unsuccessful in keeping even a meager breakfast down atop the morning pills. The good news is that the pain seems to finally be leveling off for the day, and along with it my photophobia, which should mean I'll be able to spend at least a few hours tonight actually seeing my wife.
That's all for this note - lots of little things adding up in just a few days, eh?
Monday, February 27, 2012
Drifting along
There's been a lot going on in the last few months, and yet it feels as though the span has been meandering slowly from point to point to me - strange, but a nice contrast to how things have been, I guess.
We had two more scares at the ER in the intervening time, in addition to Eden's December visits. Firstly, Eden's mother, Suzanne, had a deep vein thrombosis (blood clot) in her leg again, ultimately leading to a minor pulmonary embolism. Fortunately, having been through it before, she recognized the symptoms and got to a hospital quick, rather than letting things fester while hoping to get better. Aside from some really nasty pain requiring extensive medication, she seems to have pulled through the ordeal in good shape and good spirits.
Our other casualty was Eden's aunt Carol, who had a twisted colon, again with massive amounts of pain. It actually ended up being a good thing, though, as the abdominal ultrasound that was used to help diagnose her also caught a sizable per-cancerous ovarian cyst that the doctors were able to remove without problems. Bottom line, Carol is down a few inches of intestine, but doing fine, and already up and about. So far that seems to have capped the expected trifecta of emergencies and things have calmed down again, save for all of us juggling finances and paperwork to try to deal with the bills from said visits. Personally, I've seen all I can stand of ERs and patient rooms for a good long time.
My own pain has continued to be unresponsive to the latest meds prescribed by my neurologist, Divalproex and Magnesium Oxide, or at least any changes produced have been well within my normal pattern of variation - if anything the episodes have been slightly shorter and sharper. I did end up with one unbroken migraine over 30 hours that Eden took me to the VA ER for, but that was responsive to the Torridol cocktail this time (Yay!), and the pain broke within a few hours. Other than that, I've been sticking with the daily attacks, more noticeably aggravated by the strange weather we've been having lately, especially this past weekend (shifting from sunny to rainy to sleeting and back all within an hour).
Given that I appear to be stuck with this for the long term, I applied to the VA's Chronic Pain Management program, but was turned down, as my neurologist didn't want any changes from my medication to be masked by anything from the program - annoying as heck, I've got to say (seriously, I'll take anything that might help right now, and we can worry about _what_ works after we get things working). I'm trying to figure out how to make things work within the system, but we'll see where it all lands.
On the plus side for the VA, I did get set up with my new psychiatrist, Dr. Smith, who seems quite competent and caring, judging from our initial consult, who in turn has referred me to Dr. Sullivan for some evaluation and work on memory and ADHD issues. Both have given me a bit of hope that I'll see visible improvement from their work. I've also just gotten my decision from the social security administration, who have approved my disability. Seems awfully strange to be happy about being disabled, but hey - it nets out as enabling us to live, a bit. The backpay from that actually let us knock out an awful credit card that we've been paying on for years (at 26%) that was left over from Eden's first divorce, which significantly helps with our monthly bills. We also are back to having enough money to have a tiny budget, which is almost perverse. Among other things, this has allowed us to start having some planned dates again, which has been fabulous for our relationship. We're still adapting, however - even though we're budgeting for some savings and personal funds, and in the month and change that we've had cash again, I'm pretty sure we've only spent out of our personal funds at all for Valentine's day - still stuck in a bit of a starvation mindset, I think.
There have been a few bright spots as well, including Cassie's birthday party at the local watering hole/pool hall, Sam's - given that we haven't been able to socialize all that much recently, it was an awfully nice chance to catch up with everybody. Fairy Floss had quite a nice event this past weekend as well, catering cotton candy for a local Bat Mitzvah and making quite a few contacts for new business, from the sound of it. Other than that, a good portion of the family's free time has been spent sorting through years of treasures that have been amassed at Vivian's old house for an upcoming estate sale. Lots of work to do yet, but still interesting to see all of the amazing ephemera that she's collected.
Finally, I've officially put together my Notice of Disagreement with the VA's initial decision on my disability and sent it off. If you're interested in the case, you might like to read through the notice below (which has relevant sections of the enclosures quoted) - I've included the enclosures in their entirety as well for others that are pursuing claims for Atsugi, who will hopefully have a slightly easier time getting their cases heard.
Disability - VA - SIS3 - VA Initial Decision_Redacted.pdf
Disability - VA - SIS3 - Notice of Disagreement_Redacted.pdf
Disability - VA - SIS3 - Enclosure 1 - Joshua A. Byram - Treatment and Medication_Redacted.pdf
Disability - VA - SIS3 - Enclosure 2 - SS Initial Decision_Redacted.pdf
Disability - VA - SIS3 - Enclosure 2 - SS Decision_Redacted.pdf
Disability - VA - SIS3 - Enclosure 3 - 1989Study.pdf
Disability - VA - SIS3 - Enclosure 4 - 1990OnsiteInvestigationIncineratorEm.pdf
Disability - VA - SIS3 - Enclosure 5 - 91_Government_Relationships.pdf
Disability - VA - SIS3 - Enclosure 6 - 1999ArmedForcesEpidemiologicalBoard.pdf
Disability - VA - SIS3 - Enclosure 7 - NAVINSGEN1998.pdf
Disability - VA - SIS3 - Enclosure 8 - APPENDIXFAcuteeffectstable.pdf
Disability - VA - SIS3 - Enclosure 9 - Is this a poisons coverup_ _ The Japan Times Online.pdf
Disability - VA - SIS3 - Enclosure 10 - USDOJPetitionStatements.pdf
Disability - VA - SIS3 - Enclosure 11 - atsugiailments - www.atsugi-incinerator-group.pdf
Disability - VA - SIS3 - Enclosure 12 - Tox Town - Dioxins - Toxic chemicals and environmental health risks where you live and work - Text Version.pdf
Disability - VA - SIS3 - Enclosure 13 - lists.essential.org_pipermail_dioxin-l_Week-of-Mon-19991220.pdf
Disability - VA - SIS3 - Enclosure 14 - 'Do the Right Thing' - Salem-News.pdf
Disability - VA - SIS3 - Enclosure 15 - An Open Letter to President Obama _ Veterans Today.pdf
Disability - VA - SIS3 - Enclosure 16 - Environmental Exposure Claims and Senate Bill S.3378 _ Veterans Today.pdf
Disability - VA - SIS3 - Enclosure 17 - The Migraine-Depression Connection _ Psychology Today.pdf
Disability - VA - SIS3 - Enclosure 18 - PsychiatryOnline _ Psychiatric News _ News Article.pdf.pdf
Disability - VA - SIS3 - Enclosure 19 - Statement in Support of Claim - Louis_Redacted.pdf
Disability - VA - SIS3 - Enclosure 20 - Statement in Support of Claim - Teresa_Redacted.pdf
Disability - VA - SIS3 - Enclosure 21 - Statement in Support of Claim - Chris_Redacted.pdf
We had two more scares at the ER in the intervening time, in addition to Eden's December visits. Firstly, Eden's mother, Suzanne, had a deep vein thrombosis (blood clot) in her leg again, ultimately leading to a minor pulmonary embolism. Fortunately, having been through it before, she recognized the symptoms and got to a hospital quick, rather than letting things fester while hoping to get better. Aside from some really nasty pain requiring extensive medication, she seems to have pulled through the ordeal in good shape and good spirits.
Our other casualty was Eden's aunt Carol, who had a twisted colon, again with massive amounts of pain. It actually ended up being a good thing, though, as the abdominal ultrasound that was used to help diagnose her also caught a sizable per-cancerous ovarian cyst that the doctors were able to remove without problems. Bottom line, Carol is down a few inches of intestine, but doing fine, and already up and about. So far that seems to have capped the expected trifecta of emergencies and things have calmed down again, save for all of us juggling finances and paperwork to try to deal with the bills from said visits. Personally, I've seen all I can stand of ERs and patient rooms for a good long time.
My own pain has continued to be unresponsive to the latest meds prescribed by my neurologist, Divalproex and Magnesium Oxide, or at least any changes produced have been well within my normal pattern of variation - if anything the episodes have been slightly shorter and sharper. I did end up with one unbroken migraine over 30 hours that Eden took me to the VA ER for, but that was responsive to the Torridol cocktail this time (Yay!), and the pain broke within a few hours. Other than that, I've been sticking with the daily attacks, more noticeably aggravated by the strange weather we've been having lately, especially this past weekend (shifting from sunny to rainy to sleeting and back all within an hour).
Given that I appear to be stuck with this for the long term, I applied to the VA's Chronic Pain Management program, but was turned down, as my neurologist didn't want any changes from my medication to be masked by anything from the program - annoying as heck, I've got to say (seriously, I'll take anything that might help right now, and we can worry about _what_ works after we get things working). I'm trying to figure out how to make things work within the system, but we'll see where it all lands.
On the plus side for the VA, I did get set up with my new psychiatrist, Dr. Smith, who seems quite competent and caring, judging from our initial consult, who in turn has referred me to Dr. Sullivan for some evaluation and work on memory and ADHD issues. Both have given me a bit of hope that I'll see visible improvement from their work. I've also just gotten my decision from the social security administration, who have approved my disability. Seems awfully strange to be happy about being disabled, but hey - it nets out as enabling us to live, a bit. The backpay from that actually let us knock out an awful credit card that we've been paying on for years (at 26%) that was left over from Eden's first divorce, which significantly helps with our monthly bills. We also are back to having enough money to have a tiny budget, which is almost perverse. Among other things, this has allowed us to start having some planned dates again, which has been fabulous for our relationship. We're still adapting, however - even though we're budgeting for some savings and personal funds, and in the month and change that we've had cash again, I'm pretty sure we've only spent out of our personal funds at all for Valentine's day - still stuck in a bit of a starvation mindset, I think.
There have been a few bright spots as well, including Cassie's birthday party at the local watering hole/pool hall, Sam's - given that we haven't been able to socialize all that much recently, it was an awfully nice chance to catch up with everybody. Fairy Floss had quite a nice event this past weekend as well, catering cotton candy for a local Bat Mitzvah and making quite a few contacts for new business, from the sound of it. Other than that, a good portion of the family's free time has been spent sorting through years of treasures that have been amassed at Vivian's old house for an upcoming estate sale. Lots of work to do yet, but still interesting to see all of the amazing ephemera that she's collected.
Finally, I've officially put together my Notice of Disagreement with the VA's initial decision on my disability and sent it off. If you're interested in the case, you might like to read through the notice below (which has relevant sections of the enclosures quoted) - I've included the enclosures in their entirety as well for others that are pursuing claims for Atsugi, who will hopefully have a slightly easier time getting their cases heard.
Disability - VA - SIS3 - VA Initial Decision_Redacted.pdf
Disability - VA - SIS3 - Notice of Disagreement_Redacted.pdf
Disability - VA - SIS3 - Enclosure 1 - Joshua A. Byram - Treatment and Medication_Redacted.pdf
Disability - VA - SIS3 - Enclosure 2 - SS Initial Decision_Redacted.pdf
Disability - VA - SIS3 - Enclosure 2 - SS Decision_Redacted.pdf
Disability - VA - SIS3 - Enclosure 3 - 1989Study.pdf
Disability - VA - SIS3 - Enclosure 4 - 1990OnsiteInvestigationIncineratorEm.pdf
Disability - VA - SIS3 - Enclosure 5 - 91_Government_Relationships.pdf
Disability - VA - SIS3 - Enclosure 6 - 1999ArmedForcesEpidemiologicalBoard.pdf
Disability - VA - SIS3 - Enclosure 7 - NAVINSGEN1998.pdf
Disability - VA - SIS3 - Enclosure 8 - APPENDIXFAcuteeffectstable.pdf
Disability - VA - SIS3 - Enclosure 9 - Is this a poisons coverup_ _ The Japan Times Online.pdf
Disability - VA - SIS3 - Enclosure 10 - USDOJPetitionStatements.pdf
Disability - VA - SIS3 - Enclosure 11 - atsugiailments - www.atsugi-incinerator-group.pdf
Disability - VA - SIS3 - Enclosure 12 - Tox Town - Dioxins - Toxic chemicals and environmental health risks where you live and work - Text Version.pdf
Disability - VA - SIS3 - Enclosure 13 - lists.essential.org_pipermail_dioxin-l_Week-of-Mon-19991220.pdf
Disability - VA - SIS3 - Enclosure 14 - 'Do the Right Thing' - Salem-News.pdf
Disability - VA - SIS3 - Enclosure 15 - An Open Letter to President Obama _ Veterans Today.pdf
Disability - VA - SIS3 - Enclosure 16 - Environmental Exposure Claims and Senate Bill S.3378 _ Veterans Today.pdf
Disability - VA - SIS3 - Enclosure 17 - The Migraine-Depression Connection _ Psychology Today.pdf
Disability - VA - SIS3 - Enclosure 18 - PsychiatryOnline _ Psychiatric News _ News Article.pdf.pdf
Disability - VA - SIS3 - Enclosure 19 - Statement in Support of Claim - Louis_Redacted.pdf
Disability - VA - SIS3 - Enclosure 20 - Statement in Support of Claim - Teresa_Redacted.pdf
Disability - VA - SIS3 - Enclosure 21 - Statement in Support of Claim - Chris_Redacted.pdf
Saturday, December 31, 2011
New year's day
As seems to always be the case, it's been rather longer than intended since I've updated this blog, and there's a fair amount of news to share. Not the best pattern, I'll admit, but I guess I should just dig in and start where we last left off.
The new primary care doctor, Dr. Glynn, who is supposed to be a stand in for Dr. Ferguson until she comes back, is a putz. I'm sure he's a fabulous person socially, and has uncounted merits outside of the realm of his medical practice, but in my unprofessional opinion, he's just fabulously unprofessional himself and is completely useless with regard to actually helping me. My session with him consisted almost entirely of him sitting there with my chart and reading previous entries aloud to me (apparently because he hadn't bothered to even open it prior to meeting me). As seems to always be the case with new doctors, he immediately glommed on to my elevated blood pressure as the sole possible cause of my problems, and started me on a new Ace inhibitor, Lisinopril, despite my repeated assurances that every time I started a new blood pressure management med (Calcium channel blockers, Beta blockers, and Ace inhibitors, I've tried 'em all before), my migraines and associated side effects always get exponentially worse. As a partial response, and to try to limit the horrible spikes caused by these meds, I've given up caffeine again. If nothing else, it's trimmed my waistline slightly.
There was no help for it but to start taking the new med, in addition to my normal battalion of pills, for a while, just to illustrate that the horrific elevation of effects would take place. After a month and a half of agony, it was time to stop, despite the message passed through the nursing staff that he "highly encouraged" me to continue taking the damn thing.
Along the way I met with another putz, Dr. Wolman, who was taking over for my previous psychiatrist, Dr. Blumner (a perfectly fabulous woman, who unfortunately was being rotated to another practice). My appointment with him lasted literally 6 minutes, during which time he simply skimmed through my chart and muttered to himself, pretty much ignoring the fact that I was in the room. No response whatsoever to my inquiries about worsening memory issues (I'm now intermittently losing events entirely ala Alzheimer's as opposed to the previous mode of at least knowing that I'm missing information and simply not being able to access it), nor issues of confusion and intermittent despondency (little spikes of just overwhelming depression that is nonetheless completely without a specific focus, most of the time, that only last a little while). His only direct statement to me was "it's clear to me that your appointment was to refill your prescription for Dextroamphetamine", or something very close to that. Sure, it's nice to have my ADHD med, and it is a controlled substance requiring his approval, but that's hardly the only reason I was there. It was almost as if I was being summarily dismissed from the principal's office.
I did get the MRI that I'd been waiting for for so long in early December, which went pretty well actually. If you ever have to get one, trust the technicians when they say that the thing is LOUD. I got told this three separate times, and still wasn't prepared for the incredible penetrating tones that came through the provided earplugs. 40 minutes is a VERY long time to lie still, although I will admit that it was made significantly more bearable by the mirror contraption that they suspend in front of your face that allowed me to see out of the tube to the control room and the clock on the wall. Other than having to suppress my normal fidgetyness for such a long time, it actually wasn't that bad, even with the technician accidentally breaking off the needle for the IV in my arm (to put in the contrast fluid) as I came out of the tube. Didn't hurt much at all, but did get blood pretty much everywhere, leaving the technician a rather long job of cleaning up.
My neurologist ended up calling me the day before my scheduled appointment to let me know that the MRI showed no significant issues, so that appointment got bumped back a month and he had me up my current dose of Gabapentin in hopes of showing more effect. Thus far, it's been hard to say if it's doing anything for me - honestly it doesn't feel like it's doing anything beyond perhaps keeping away the multi-day long migraines, but it's entirely possible that it's doing wonders and my current migraines would be that much worse without it, considering the pace at which they'd been advancing. That's something I'm more than a bit terrified of, really; the thought that things will just continue to get worse with no real physical explanation ever found.
Eden ended up in the Emergency room herself a couple of times towards the beginning of December, landing with a rather useless stint at OHSU which provided no help at all, and a much shorter stay at Southwest Washington that nonetheless was vastly better for her. They hooked her up with a marvelous outpatient clinic, Elohan Place, and got us started with the appropriate paperwork and referrals to continue her care afterward without taxing our already microscopic budget. Incredibly good people there, both in staff and in patients, and Eden has already been back there to visit a number of times as well as to hold a small knitting class; an event that looks like it may become somewhat habitual for her, based on the initial response.
It's good that Eden will be getting some care through the state programs, since my initial hope for her to be covered through the VA insurance as my caretaker has fallen through for the moment. We finally got back a decision on my disability case on Christmas eve, no less. More than a little disappointing, I'm afraid - they flat out denied every aspect of the claim save for my psoriasis, which they rated at 0% (i.e. "we probably caused it, but it doesn't affect you, right?"). For Eden to have been covered, we would have needed a disability rating of at least 30%, so no luck there. So, now we'll be starting the potentially agonizingly long appeals process at the beginning of the new year. No word back from the Social Security case, but I'd imagine we'll be hearing from them soonish.
Christmas has been a rather long, but enjoyable, season so far, starting with a run down to my parents' place on the 23rd to celebrate with Tim, followed by Christmas eve at Vivian's and Christmas day at Pat's. Eden wasn't feeling recovered enough to travel, unfortunately, so she ended up staying in Oregon while I flew out to Minnesota and the Byram clan at Bugbee's on the 27th. We moved on to Duluth on the 30th to spend some time with Betsy and Jerry, and celebrated New Year's eve with them last night. Thus far, my migraines have actually been fairly managable during the vacation, staying mostly to evening and night hours while we were at Bugbee's, and being fairly well managed by medication at Betsy and Jerry's, save for during the drive up.
Even with trying to keep my activity level low, so as to keep the migraine demons at bay as best I could, there has been an awful lot to do. I finally got around to joining the domino addicts at Bugbee's, got some great shots of the girls in the pool (I think!), and got to visit the feral cat colony that Eden and I discovered last year. I made sure to capture a bit of the experience for Eden, since she couldn't make it - perhaps a few of you that were also unable to attend might enjoy a peek as well (Please disregard the sappiness - I miss her!)
I actually transferred an old audio tape that grandma made back in 2000 to digital format and cleaned up the background noise, one of all of us passing around the microphone and reflecting on years past, so that I could reshare it with the group, but unfortunately the speakers on my laptop just weren't up to providing clear audio at a volume that could be heard, so I'm including it here for people to download if they like.
Christmas 2000 audio file
I also recorded grandma's annual question and answer game this year. Unfortunately, I didn't think about the fact that I had the video camera set to 60 frames a second, so I unintentionally cut the already horrible lighting levels in half. I'll try to bring up the lighting a bit in Adobe Premiere when I get home, but for now the audio is pretty good, at least.
I also got to take a few quick group shots of the various family groups - obviously I have more pictures to share than this, but even processing these with just a bit of retouching taxes this poor netbook horribly, so I'll probably leave off the rest until I can get to a real processor and a color balanced screen.
Finally, mom and Mejken posed for just a moment before we left Bugbee's - aren't they cute, especially mom in her fancy new hat?
Time at Betsy and Jerry's has been semi-blissfully quiet - there's been just enough snow to dust the ground and it hasn't been around long enough to turn to dirty slush. For New Years, we went out to dinner and a movie (the new Clooney film, "Descendants".) I had to duck out after that due to increasing skull pressure despite repeated medication, but the rest of the group went on to see the Fractals at a local bar, which I hear was quite good.
And that catches us up, for the most part. Life is strange, confusing, wonderful, and terrifying (especially during the night terrors inflicted by migraines that last through bedtime). For the most part, I'm in a good place, and so is Eden, although I miss her terribly after only a week away. I head home in only two days, and though I love spending time with my family, it can't come soon enough.
The new primary care doctor, Dr. Glynn, who is supposed to be a stand in for Dr. Ferguson until she comes back, is a putz. I'm sure he's a fabulous person socially, and has uncounted merits outside of the realm of his medical practice, but in my unprofessional opinion, he's just fabulously unprofessional himself and is completely useless with regard to actually helping me. My session with him consisted almost entirely of him sitting there with my chart and reading previous entries aloud to me (apparently because he hadn't bothered to even open it prior to meeting me). As seems to always be the case with new doctors, he immediately glommed on to my elevated blood pressure as the sole possible cause of my problems, and started me on a new Ace inhibitor, Lisinopril, despite my repeated assurances that every time I started a new blood pressure management med (Calcium channel blockers, Beta blockers, and Ace inhibitors, I've tried 'em all before), my migraines and associated side effects always get exponentially worse. As a partial response, and to try to limit the horrible spikes caused by these meds, I've given up caffeine again. If nothing else, it's trimmed my waistline slightly.
There was no help for it but to start taking the new med, in addition to my normal battalion of pills, for a while, just to illustrate that the horrific elevation of effects would take place. After a month and a half of agony, it was time to stop, despite the message passed through the nursing staff that he "highly encouraged" me to continue taking the damn thing.
Along the way I met with another putz, Dr. Wolman, who was taking over for my previous psychiatrist, Dr. Blumner (a perfectly fabulous woman, who unfortunately was being rotated to another practice). My appointment with him lasted literally 6 minutes, during which time he simply skimmed through my chart and muttered to himself, pretty much ignoring the fact that I was in the room. No response whatsoever to my inquiries about worsening memory issues (I'm now intermittently losing events entirely ala Alzheimer's as opposed to the previous mode of at least knowing that I'm missing information and simply not being able to access it), nor issues of confusion and intermittent despondency (little spikes of just overwhelming depression that is nonetheless completely without a specific focus, most of the time, that only last a little while). His only direct statement to me was "it's clear to me that your appointment was to refill your prescription for Dextroamphetamine", or something very close to that. Sure, it's nice to have my ADHD med, and it is a controlled substance requiring his approval, but that's hardly the only reason I was there. It was almost as if I was being summarily dismissed from the principal's office.
I did get the MRI that I'd been waiting for for so long in early December, which went pretty well actually. If you ever have to get one, trust the technicians when they say that the thing is LOUD. I got told this three separate times, and still wasn't prepared for the incredible penetrating tones that came through the provided earplugs. 40 minutes is a VERY long time to lie still, although I will admit that it was made significantly more bearable by the mirror contraption that they suspend in front of your face that allowed me to see out of the tube to the control room and the clock on the wall. Other than having to suppress my normal fidgetyness for such a long time, it actually wasn't that bad, even with the technician accidentally breaking off the needle for the IV in my arm (to put in the contrast fluid) as I came out of the tube. Didn't hurt much at all, but did get blood pretty much everywhere, leaving the technician a rather long job of cleaning up.
My neurologist ended up calling me the day before my scheduled appointment to let me know that the MRI showed no significant issues, so that appointment got bumped back a month and he had me up my current dose of Gabapentin in hopes of showing more effect. Thus far, it's been hard to say if it's doing anything for me - honestly it doesn't feel like it's doing anything beyond perhaps keeping away the multi-day long migraines, but it's entirely possible that it's doing wonders and my current migraines would be that much worse without it, considering the pace at which they'd been advancing. That's something I'm more than a bit terrified of, really; the thought that things will just continue to get worse with no real physical explanation ever found.
Eden ended up in the Emergency room herself a couple of times towards the beginning of December, landing with a rather useless stint at OHSU which provided no help at all, and a much shorter stay at Southwest Washington that nonetheless was vastly better for her. They hooked her up with a marvelous outpatient clinic, Elohan Place, and got us started with the appropriate paperwork and referrals to continue her care afterward without taxing our already microscopic budget. Incredibly good people there, both in staff and in patients, and Eden has already been back there to visit a number of times as well as to hold a small knitting class; an event that looks like it may become somewhat habitual for her, based on the initial response.
It's good that Eden will be getting some care through the state programs, since my initial hope for her to be covered through the VA insurance as my caretaker has fallen through for the moment. We finally got back a decision on my disability case on Christmas eve, no less. More than a little disappointing, I'm afraid - they flat out denied every aspect of the claim save for my psoriasis, which they rated at 0% (i.e. "we probably caused it, but it doesn't affect you, right?"). For Eden to have been covered, we would have needed a disability rating of at least 30%, so no luck there. So, now we'll be starting the potentially agonizingly long appeals process at the beginning of the new year. No word back from the Social Security case, but I'd imagine we'll be hearing from them soonish.
Christmas has been a rather long, but enjoyable, season so far, starting with a run down to my parents' place on the 23rd to celebrate with Tim, followed by Christmas eve at Vivian's and Christmas day at Pat's. Eden wasn't feeling recovered enough to travel, unfortunately, so she ended up staying in Oregon while I flew out to Minnesota and the Byram clan at Bugbee's on the 27th. We moved on to Duluth on the 30th to spend some time with Betsy and Jerry, and celebrated New Year's eve with them last night. Thus far, my migraines have actually been fairly managable during the vacation, staying mostly to evening and night hours while we were at Bugbee's, and being fairly well managed by medication at Betsy and Jerry's, save for during the drive up.
Even with trying to keep my activity level low, so as to keep the migraine demons at bay as best I could, there has been an awful lot to do. I finally got around to joining the domino addicts at Bugbee's, got some great shots of the girls in the pool (I think!), and got to visit the feral cat colony that Eden and I discovered last year. I made sure to capture a bit of the experience for Eden, since she couldn't make it - perhaps a few of you that were also unable to attend might enjoy a peek as well (Please disregard the sappiness - I miss her!)
I actually transferred an old audio tape that grandma made back in 2000 to digital format and cleaned up the background noise, one of all of us passing around the microphone and reflecting on years past, so that I could reshare it with the group, but unfortunately the speakers on my laptop just weren't up to providing clear audio at a volume that could be heard, so I'm including it here for people to download if they like.
Christmas 2000 audio file
I also recorded grandma's annual question and answer game this year. Unfortunately, I didn't think about the fact that I had the video camera set to 60 frames a second, so I unintentionally cut the already horrible lighting levels in half. I'll try to bring up the lighting a bit in Adobe Premiere when I get home, but for now the audio is pretty good, at least.
I also got to take a few quick group shots of the various family groups - obviously I have more pictures to share than this, but even processing these with just a bit of retouching taxes this poor netbook horribly, so I'll probably leave off the rest until I can get to a real processor and a color balanced screen.
Finally, mom and Mejken posed for just a moment before we left Bugbee's - aren't they cute, especially mom in her fancy new hat?
Time at Betsy and Jerry's has been semi-blissfully quiet - there's been just enough snow to dust the ground and it hasn't been around long enough to turn to dirty slush. For New Years, we went out to dinner and a movie (the new Clooney film, "Descendants".) I had to duck out after that due to increasing skull pressure despite repeated medication, but the rest of the group went on to see the Fractals at a local bar, which I hear was quite good.
And that catches us up, for the most part. Life is strange, confusing, wonderful, and terrifying (especially during the night terrors inflicted by migraines that last through bedtime). For the most part, I'm in a good place, and so is Eden, although I miss her terribly after only a week away. I head home in only two days, and though I love spending time with my family, it can't come soon enough.
Thursday, November 3, 2011
A progress update... or lack thereof
You know, it's odd to look at the timestamp on this blog and see that it's been more than a month since I posted, when it seems like I've only been meaning to update for the last week or so; same old timewarping mind crud again, I guess. In any case, there's a fair amount to say, even if I'm not completely happy saying it.
To start off with, the trans-esophageal echo cardiogram that I'd been looking forward to for months, that would have potentially brought a solution into range or firmly defused that particular hope, (40% of migraine sufferers have a PFO, and of those that get it closed, 70% see significant improvement in their migraine symptoms, with 20% or so clearing up completely according to current studies) has not happened, and will not happen any time soon. The appointment was actually made for a normal echocardiogram (not diagnostically useful for spotting a PFO), and the tech that ran it had some serious problems with english, as well as attitude. I asked him repeatedly before and during the procedure if this was leading to the trans-esophageal exam after the prep, which he said yes to. Of course, after a couple of swipes of the transducer across my chest, he said that the test was over. I wasn't able to make myself clear to him as to what was wrong, it seems, although I did manage to convey that a PFO was what we were supposed to be looking for, whereupon he replied that he couldn't tell with this test. Bottom line, all that that test showed was some minor backflow from the major heart valves, which wasn't terribly significant one way or another with regard to the migraines.
Since that point, I've been trying to get things cleared up, and to get scheduled for the proper procedure. At first, the reply I got was that this was standard procedure for the VA, that no trans-esophageal was done without first doing a normal echo cardiogram. Fine with me, lets get that scheduled then. Well, lets see what your primary caregiver, Dr. Ferguson, has to say. This is where the whole thing falls apart. Dr. Ferguson and I made some fairly firm plans together as to what the next diagnostic steps would be, including the trans-esophageal, but I haven't heard from her since then, and her notes don't confirm this (although, ironically, the secure messaging that the VA has for patients to confer with their team does have her last message, including "The trans-esophageal echo-cardiogram is ordered by Cardiology and I will be happy to order that for him .") Apparently she's been out on sick leave pretty much since the end of September, so I guess it's something fairly serious, and I don't blame her for this mess at all at this point, but it's meant that all I've been doing has been playing phone tag with the nursing staff and whatever doctor happens to be on duty, none of whom have had more than a casual glance at the cover of my records.
At the moment, the last reply I've gotten relayed has been that the trans-esophageal is completely out of the question, because "In light of the fact that discovery of a PFO would not alter management (i.e. there is insufficient evidence to recommend PFO closure for refractory migraine with aura), I agree that bubble study is not necessary."(This is relayed from my neurologist) - apparently the VA simply will not do a PFO closure, regardless of whether or not one is present, so there's no point for them to look for one, because their own research has not been done on the subject. Totally confusing and maddening for me, of course, since I discussed the procedure in detail with both my primary and the neurologist in person. Bottom line, I can't do anything further on the PFO front until my next neurology appointment in December.
In any case, I've asked to move on to the next treatment stratagem, since the current regimen of Magnesium Oxide and Gabapentin has only been partially effective, and have had a number of not so great side effects that I'd like to get rid of. While it has managed to keep me out of the ER, the peaks of my pain have consistently been just below the level where I would resort to going in. Add to this the fact that I've stayed pretty constant at the one to two migraines a day pattern, and the "rescue" medicine that they have for me to take at the onset of an attack is only usable 9 times a month (or 3 a week) maximum, and I'm spending a hell of a lot of time just trying to deal with things, and to strategize exactly when to use those meds, since they only give me a couple of hours of fairly well blunted pain at a time. The rest of the time I'm stuck using other methods of defocusing that are only partially effective for making me functional - I need more, to be frank.
So now I have an appointment with yet another new doctor on Monday to discuss what's going to happen next (since otherwise I'd have to wait until December to make the next move). Hopefully the fact that this regimen has been more effective than other methods will lead us to another related medicine that works better for me. We'll see.
On the plus side, the chest pains that I'd been having fairly regularly seem to have petered out completely in the last month or so, and the cardiology stress test I had a week or so ago came out just fine and didn't show any significant problems. So that's at least one scary symptom I can take off of the table, at least for now. No word yet on the MRI that has supposedly been ordered for months now - I called and left a message yet again yesterday, but have received no reply. I'll be bringing this up at the Dr.'s appointment on Monday, of course; near as I can see, it's about all I can do for that particular issue.
No progress to speak of on the VA disability front - they haven't even responded to my last addition of documentation - the word from my rep was to wait until November on this, and if I hadn't heard from them then, he'd try again to check in on what's going down, so I'll probably go in next week to get that in motion. Speaking of motion, I did get around to starting my social security disability claim - after talking more extensively with the VA rep, this is going to end up being smarter to do, rather than waiting for the VA to make an initial decision. Looks like the SS people have their act far more together as well - filing the case was simple, straightforward, and quick. Honestly, I almost laughed in the gal's face when she apologized to me for the roughly 5 minute wait we had in the lobby. The usual turn around time for decisions is much lower than the VA as well; they're posting at 4 months average vice the VA's year and change for an initial decision. So now it's a waiting game with them as well; I'll probably have to go in to their examiners for medical and mental checkups soon, but other than that, I've done all that I can do for now.
Unfortunately, that waiting game has finally reached a point of unsustainability - Eden and I finally hit rock bottom, no cash at all last month, and our respective intermittent incomes haven't been making up the slack by a long shot. I talked it over with the finance genius for one of my former jobs, Carisbrook, and decided that it was time to crack the 401k that I'd built up with them. With the economy being crappy for the last couple of years, it's never even achieved parity with the money I put into it - at the time I withdrew my funds, the total was down about $2.5k. All the same, if I was going to draw from it at any point before I reached 59 and a half years old, this would be the year to do it, since the funds get counted as income, and so far we'd be claiming almost nothing. Another 20% got lopped off against taxes as I took the money out, but we'll most likely get the bulk of that back, by my calculations, and it won't hurt us any to have another small bump of incoming funds next April. At the end of it all, we have another half year or so of living at our current expenditure level if we're not too frivolous, and one or both of the disability claims should have a decision before then.
The last month has actually been pretty decent for me otherwise, personally and socially. Eden and I actually started going to marriage counseling (various big events and my sickness have thrown our mutual stress into high gear, and we needed some help not to take it out on each other), and have gotten hooked up with a fabulous therapist that we both really like. I realize that it seems horribly straightforward and unnecessary, but having a third party to observe and direct us and essentially say "you two are obviously stupidly in love with each other and just need some help communicating that fact" has been enormously helpful. We've both been a lot happier since we started seeing him.
We've managed a couple of escapes to Larch mountain, the gorge, and Cannon Beach during the same time, which helps us refuel a bit spiritually, just to get out of the city and share the journey together. I've even managed to drive a bit of the time, which has been fabulous for taking some of the pressure off of Eden (she's basically been my chauffeur for most of the summer and early fall) - admittedly I've had to rely on those rescue meds for the duration and have been pressing against pain at the same time, but it's still fallen back into the range of doable for a bit. The Cannon Beach trip was actually a piece of pretty cool timing - we got there just as the tide was out to the farthest point and left a number of really neat tide pools for us to explore. We only got in a couple of hours there, as my head was sounding warning bells of returning light sensitivity, etc, but it was still exactly what we needed at the time.
Fairy Floss had a really neat event a couple of weeks ago; we paid in to present at "Committed - Portland's Alternative Wedding event", and got a lot of interest from vendors, organizers, and couples along the way - we'll see how it pans out in terms of return business, but it was kind of epic just as a step in the direction of more business outside of the market.
We also just had the pleasure of attending the wedding of two of our good friends recently, Vashon Bench and Jessica Hunger. Eden was actually a groomsman for Vash, and I got to work as a backup photographer of sorts for another of Vash's older friends, James (aka Bad Mojo Photo). He does fabulous work, and it was a pleasure to see him take control of the bridal party - I'd hope to attain that level of professionalism some day, but he's been in the photo game for decades longer than I, so I think I've got some leeway in catching up. He's even turning out to be a pretty cool friend for us as well, just to hang out with, so that's good too. Unfortunately, neither of us has quite finished processing our respective photos, so the couple will just have to wait to see how things turned out.
So that's about where things are at at the moment - Eden's been down for the count with an especially nasty case of the flu or somesuch since last Monday, so I've been taking care of her intermittently since then, and I'm starting to feel the inevitable onset of the symptoms myself, so that's going to pretty much take care of our weekend, I'd suspect. Ah well, such is life.
To start off with, the trans-esophageal echo cardiogram that I'd been looking forward to for months, that would have potentially brought a solution into range or firmly defused that particular hope, (40% of migraine sufferers have a PFO, and of those that get it closed, 70% see significant improvement in their migraine symptoms, with 20% or so clearing up completely according to current studies) has not happened, and will not happen any time soon. The appointment was actually made for a normal echocardiogram (not diagnostically useful for spotting a PFO), and the tech that ran it had some serious problems with english, as well as attitude. I asked him repeatedly before and during the procedure if this was leading to the trans-esophageal exam after the prep, which he said yes to. Of course, after a couple of swipes of the transducer across my chest, he said that the test was over. I wasn't able to make myself clear to him as to what was wrong, it seems, although I did manage to convey that a PFO was what we were supposed to be looking for, whereupon he replied that he couldn't tell with this test. Bottom line, all that that test showed was some minor backflow from the major heart valves, which wasn't terribly significant one way or another with regard to the migraines.
Since that point, I've been trying to get things cleared up, and to get scheduled for the proper procedure. At first, the reply I got was that this was standard procedure for the VA, that no trans-esophageal was done without first doing a normal echo cardiogram. Fine with me, lets get that scheduled then. Well, lets see what your primary caregiver, Dr. Ferguson, has to say. This is where the whole thing falls apart. Dr. Ferguson and I made some fairly firm plans together as to what the next diagnostic steps would be, including the trans-esophageal, but I haven't heard from her since then, and her notes don't confirm this (although, ironically, the secure messaging that the VA has for patients to confer with their team does have her last message, including "The trans-esophageal echo-cardiogram is ordered by Cardiology and I will be happy to order that for him .") Apparently she's been out on sick leave pretty much since the end of September, so I guess it's something fairly serious, and I don't blame her for this mess at all at this point, but it's meant that all I've been doing has been playing phone tag with the nursing staff and whatever doctor happens to be on duty, none of whom have had more than a casual glance at the cover of my records.
At the moment, the last reply I've gotten relayed has been that the trans-esophageal is completely out of the question, because "In light of the fact that discovery of a PFO would not alter management (i.e. there is insufficient evidence to recommend PFO closure for refractory migraine with aura), I agree that bubble study is not necessary."(This is relayed from my neurologist) - apparently the VA simply will not do a PFO closure, regardless of whether or not one is present, so there's no point for them to look for one, because their own research has not been done on the subject. Totally confusing and maddening for me, of course, since I discussed the procedure in detail with both my primary and the neurologist in person. Bottom line, I can't do anything further on the PFO front until my next neurology appointment in December.
In any case, I've asked to move on to the next treatment stratagem, since the current regimen of Magnesium Oxide and Gabapentin has only been partially effective, and have had a number of not so great side effects that I'd like to get rid of. While it has managed to keep me out of the ER, the peaks of my pain have consistently been just below the level where I would resort to going in. Add to this the fact that I've stayed pretty constant at the one to two migraines a day pattern, and the "rescue" medicine that they have for me to take at the onset of an attack is only usable 9 times a month (or 3 a week) maximum, and I'm spending a hell of a lot of time just trying to deal with things, and to strategize exactly when to use those meds, since they only give me a couple of hours of fairly well blunted pain at a time. The rest of the time I'm stuck using other methods of defocusing that are only partially effective for making me functional - I need more, to be frank.
So now I have an appointment with yet another new doctor on Monday to discuss what's going to happen next (since otherwise I'd have to wait until December to make the next move). Hopefully the fact that this regimen has been more effective than other methods will lead us to another related medicine that works better for me. We'll see.
On the plus side, the chest pains that I'd been having fairly regularly seem to have petered out completely in the last month or so, and the cardiology stress test I had a week or so ago came out just fine and didn't show any significant problems. So that's at least one scary symptom I can take off of the table, at least for now. No word yet on the MRI that has supposedly been ordered for months now - I called and left a message yet again yesterday, but have received no reply. I'll be bringing this up at the Dr.'s appointment on Monday, of course; near as I can see, it's about all I can do for that particular issue.
No progress to speak of on the VA disability front - they haven't even responded to my last addition of documentation - the word from my rep was to wait until November on this, and if I hadn't heard from them then, he'd try again to check in on what's going down, so I'll probably go in next week to get that in motion. Speaking of motion, I did get around to starting my social security disability claim - after talking more extensively with the VA rep, this is going to end up being smarter to do, rather than waiting for the VA to make an initial decision. Looks like the SS people have their act far more together as well - filing the case was simple, straightforward, and quick. Honestly, I almost laughed in the gal's face when she apologized to me for the roughly 5 minute wait we had in the lobby. The usual turn around time for decisions is much lower than the VA as well; they're posting at 4 months average vice the VA's year and change for an initial decision. So now it's a waiting game with them as well; I'll probably have to go in to their examiners for medical and mental checkups soon, but other than that, I've done all that I can do for now.
Unfortunately, that waiting game has finally reached a point of unsustainability - Eden and I finally hit rock bottom, no cash at all last month, and our respective intermittent incomes haven't been making up the slack by a long shot. I talked it over with the finance genius for one of my former jobs, Carisbrook, and decided that it was time to crack the 401k that I'd built up with them. With the economy being crappy for the last couple of years, it's never even achieved parity with the money I put into it - at the time I withdrew my funds, the total was down about $2.5k. All the same, if I was going to draw from it at any point before I reached 59 and a half years old, this would be the year to do it, since the funds get counted as income, and so far we'd be claiming almost nothing. Another 20% got lopped off against taxes as I took the money out, but we'll most likely get the bulk of that back, by my calculations, and it won't hurt us any to have another small bump of incoming funds next April. At the end of it all, we have another half year or so of living at our current expenditure level if we're not too frivolous, and one or both of the disability claims should have a decision before then.
The last month has actually been pretty decent for me otherwise, personally and socially. Eden and I actually started going to marriage counseling (various big events and my sickness have thrown our mutual stress into high gear, and we needed some help not to take it out on each other), and have gotten hooked up with a fabulous therapist that we both really like. I realize that it seems horribly straightforward and unnecessary, but having a third party to observe and direct us and essentially say "you two are obviously stupidly in love with each other and just need some help communicating that fact" has been enormously helpful. We've both been a lot happier since we started seeing him.
We've managed a couple of escapes to Larch mountain, the gorge, and Cannon Beach during the same time, which helps us refuel a bit spiritually, just to get out of the city and share the journey together. I've even managed to drive a bit of the time, which has been fabulous for taking some of the pressure off of Eden (she's basically been my chauffeur for most of the summer and early fall) - admittedly I've had to rely on those rescue meds for the duration and have been pressing against pain at the same time, but it's still fallen back into the range of doable for a bit. The Cannon Beach trip was actually a piece of pretty cool timing - we got there just as the tide was out to the farthest point and left a number of really neat tide pools for us to explore. We only got in a couple of hours there, as my head was sounding warning bells of returning light sensitivity, etc, but it was still exactly what we needed at the time.
Fairy Floss had a really neat event a couple of weeks ago; we paid in to present at "Committed - Portland's Alternative Wedding event", and got a lot of interest from vendors, organizers, and couples along the way - we'll see how it pans out in terms of return business, but it was kind of epic just as a step in the direction of more business outside of the market.
We also just had the pleasure of attending the wedding of two of our good friends recently, Vashon Bench and Jessica Hunger. Eden was actually a groomsman for Vash, and I got to work as a backup photographer of sorts for another of Vash's older friends, James (aka Bad Mojo Photo). He does fabulous work, and it was a pleasure to see him take control of the bridal party - I'd hope to attain that level of professionalism some day, but he's been in the photo game for decades longer than I, so I think I've got some leeway in catching up. He's even turning out to be a pretty cool friend for us as well, just to hang out with, so that's good too. Unfortunately, neither of us has quite finished processing our respective photos, so the couple will just have to wait to see how things turned out.
So that's about where things are at at the moment - Eden's been down for the count with an especially nasty case of the flu or somesuch since last Monday, so I've been taking care of her intermittently since then, and I'm starting to feel the inevitable onset of the symptoms myself, so that's going to pretty much take care of our weekend, I'd suspect. Ah well, such is life.
Tuesday, September 27, 2011
Perception is reality
It's really quite perverse, living with chronic pain and having profound memory issues. On the bad days, it often feels like it hasn't been quite this bad in a while (even if yesterday was actually quite awful), and on the good days, you begin to doubt that it was ever really all that bad, save for a few memorable incidents. It really screws around with your self image, because you never quite feel like you can trust either your own opinions or memories.
Since I've been working with the VA to control things, I've tried to be more faithful in recording changes and statuses regularly, but it's hard to figure out exactly what to say, and when. There's little objective value in just repeating "it really, really hurts, and makes me want to vomit", so I'm afraid that many of my entries tend to be needlessly specific and clinical, even if no one else will ever see them. Even so, it's easier for me to believe myself when I can more clearly see the trends and spikes in depression and pain. That helps, some, but doesn't hold for long. It's really, really messed up to be in the middle of a horrible attack and still feel like you might be a hypochondriac.
I'm a little conflicted right now, too, about the concern the family is showing for me. It's gotten so that nearly any time I'm in pain or look uncomfortable (she often sees me holding my head or cringing from light long before I'm consciously aware of anything more than discomfort), Eden will immediately ask me "Do you need me to take you to the ER?"
It's the right question to ask; I know she only wants to help and in turn feels the same incredibly intense need to fix things that I do when she's in pain, but at the same time, it makes me feel terribly odd, every time. On the one hand, the VA isn't really set up to do anything but send you to the ER if you don't already have an appropriate appointment, and on the other, I sure as hell don't want to crowd the only VA emergency room in the Portland area when they routinely only have 2 doctors on duty at once. So, again, I tell her "No, it's just a bad day.", which has absolutely been the truth recently, but the bad days have been coasting along at just below crisis level.
On the plus side, I'm still getting the occasional block of daylight hours that ends up relatively symptom-free, even if the mornings and evenings aren't doing so hot. The nausea had even been staying away entirely for a few days in a row last week, so Eden, Cassie, and I hopped in the car on Friday and went up to Home Valley to swim, just past Stevenson, WA. It was actually my first run there in months, even though the girls have been heading there regularly all summer, as their respective tans attest. The length of the trip and the associated twists and turns just made it an impossibility while my stomach was even slightly twitchy, as our few aborted group attempts prior will attest.
In this case, however, we actually had a wonderful time, something of an appropriate goodbye to the season on the autumnal equinox, and we even got to go by Granma's Gedunk and get a scoop of ice cream before they closed for the year. The heat in the air was much less oppressive there, and it was still pretty warm in the water (I tend to get a bit shy about just jumping in when it's icey.) My head even held long enough for me to take over driving on the way home, as Eden was just bushed.
Yesterday morning was pretty good as well; I got to accompany Eden out to see Vivian and do some housework for her, as has become a bi-Monday habit. Again, restrictions in movement ability have kept me from doing this for months, and I missed seeing her outside of the occasional family group meal. Very odd day, symptomatically, actually - much of the day was simply swept aside by massive waves of dizziness and nausea, fortunately waiting to start until we were already out for sushi with her. I absolutely love pickled ginger on sushi rolls, and it helped my stomach quite a bit for the short term.
Once we got home, we got something of an explanation for the big charge, if not a reason for it. Upon checking,my blood pressure was 30-40 below my average, starting at 57/99 at 73 bpm, and holding in that range for nearly the entire day. Normally, I run very high, staying in the 110-120/150-160 at 100+ bpm, with spikes over the 160 line (official hypertension) when I'm in active pain. Climbed back towards my normal range today, but still feeling pretty off.
It's far to early to make any definitive statements, but all the same, it feels like the new magnesium oxide and gabapentin combo that's supposed to help level out my symptoms over the long term is having some effect - at the least, my answers about the ER hasn't had to be "YES!" since I started taking it almost two weeks ago, and I'm still not quite up to the final level of dosage yet. If only I could get an answer on increasing my number of pills for my rescue meds that I'm supposed to take at the onset of an attack to blunt it (currently I'm allotted 9 pills per month... and I'm having migraines twice a day, most days), I'd actually be pretty happy with the progress over the short term. At the least, when I actually do break down and use one of the rescue meds, it does seem to help noticably, and usually within an hour or so (my last usually took about 2.5 hours to do anything, if they were going to).
We'll see how things turn out. I did receive my results back from the IGE allergen test, and if I'm interpretting the number correctly, I'm not significantly allergic to anything they test for. (Again the double-edged sword - I don't have to give up any major food group for life, but no instant fix from it either).
This Friday is actually going to be rather interesting, or at least I think so. I'm going in for a trans-esophageal echo-cardiogram (an ultrasound probe down my throat, so as to be able to get right up next to my heart and get a very clear picture of the structures.) They'll be looking specifically for a malady known as PFO, or Patient Foramen Ovale. Here's the theory on what it is and why it sounds like a perfect match, to me: When you're in the womb, your mom's lungs are doing all of the breahting for both of you, so there's an open passage in your heart that connects the right and left halves, effectively bypassing your own system. Normally, this closes completely before birth, and the halves are completely independent, with one half pumping deoxygenated blood from the body to the lungs, and the other pumping oxygen-rich blood back out.
If I do have PFO, it means that this passage is partially open again, and may be allowing some de-oxygenated blood to bypass the system, which accounts for so many things, in my head. Not only is it potentially directly responsible for the migraines, but also explains the high blood pressure/bpm (more work to do the job if it's a less efficient gas exchange), the extremely volatile and unpredictable nature of my attacks, and the sudden spikes of heart pain (asphyxiation HURTS, thanks to lactic acid build up, and if the cardiac circuit that actually supplies the heart with oxygen gets a spike of oxygen poor blood, that's just what it would feel like. The good news is that if it is PFO, it should be fixable with surgery. This test and possible explanation actually came from one of my former advisors down at Klamath Falls, as he was actually doing a study on this very phenomenon and mentioned that I sounded like an ideal match in my interview. If nothing else, it's a fascinating theory to me, almost beautiful in the elegance with which is would explain so much.
Since I've been working with the VA to control things, I've tried to be more faithful in recording changes and statuses regularly, but it's hard to figure out exactly what to say, and when. There's little objective value in just repeating "it really, really hurts, and makes me want to vomit", so I'm afraid that many of my entries tend to be needlessly specific and clinical, even if no one else will ever see them. Even so, it's easier for me to believe myself when I can more clearly see the trends and spikes in depression and pain. That helps, some, but doesn't hold for long. It's really, really messed up to be in the middle of a horrible attack and still feel like you might be a hypochondriac.
I'm a little conflicted right now, too, about the concern the family is showing for me. It's gotten so that nearly any time I'm in pain or look uncomfortable (she often sees me holding my head or cringing from light long before I'm consciously aware of anything more than discomfort), Eden will immediately ask me "Do you need me to take you to the ER?"
It's the right question to ask; I know she only wants to help and in turn feels the same incredibly intense need to fix things that I do when she's in pain, but at the same time, it makes me feel terribly odd, every time. On the one hand, the VA isn't really set up to do anything but send you to the ER if you don't already have an appropriate appointment, and on the other, I sure as hell don't want to crowd the only VA emergency room in the Portland area when they routinely only have 2 doctors on duty at once. So, again, I tell her "No, it's just a bad day.", which has absolutely been the truth recently, but the bad days have been coasting along at just below crisis level.
On the plus side, I'm still getting the occasional block of daylight hours that ends up relatively symptom-free, even if the mornings and evenings aren't doing so hot. The nausea had even been staying away entirely for a few days in a row last week, so Eden, Cassie, and I hopped in the car on Friday and went up to Home Valley to swim, just past Stevenson, WA. It was actually my first run there in months, even though the girls have been heading there regularly all summer, as their respective tans attest. The length of the trip and the associated twists and turns just made it an impossibility while my stomach was even slightly twitchy, as our few aborted group attempts prior will attest.
In this case, however, we actually had a wonderful time, something of an appropriate goodbye to the season on the autumnal equinox, and we even got to go by Granma's Gedunk and get a scoop of ice cream before they closed for the year. The heat in the air was much less oppressive there, and it was still pretty warm in the water (I tend to get a bit shy about just jumping in when it's icey.) My head even held long enough for me to take over driving on the way home, as Eden was just bushed.
Yesterday morning was pretty good as well; I got to accompany Eden out to see Vivian and do some housework for her, as has become a bi-Monday habit. Again, restrictions in movement ability have kept me from doing this for months, and I missed seeing her outside of the occasional family group meal. Very odd day, symptomatically, actually - much of the day was simply swept aside by massive waves of dizziness and nausea, fortunately waiting to start until we were already out for sushi with her. I absolutely love pickled ginger on sushi rolls, and it helped my stomach quite a bit for the short term.
Once we got home, we got something of an explanation for the big charge, if not a reason for it. Upon checking,my blood pressure was 30-40 below my average, starting at 57/99 at 73 bpm, and holding in that range for nearly the entire day. Normally, I run very high, staying in the 110-120/150-160 at 100+ bpm, with spikes over the 160 line (official hypertension) when I'm in active pain. Climbed back towards my normal range today, but still feeling pretty off.
It's far to early to make any definitive statements, but all the same, it feels like the new magnesium oxide and gabapentin combo that's supposed to help level out my symptoms over the long term is having some effect - at the least, my answers about the ER hasn't had to be "YES!" since I started taking it almost two weeks ago, and I'm still not quite up to the final level of dosage yet. If only I could get an answer on increasing my number of pills for my rescue meds that I'm supposed to take at the onset of an attack to blunt it (currently I'm allotted 9 pills per month... and I'm having migraines twice a day, most days), I'd actually be pretty happy with the progress over the short term. At the least, when I actually do break down and use one of the rescue meds, it does seem to help noticably, and usually within an hour or so (my last usually took about 2.5 hours to do anything, if they were going to).
We'll see how things turn out. I did receive my results back from the IGE allergen test, and if I'm interpretting the number correctly, I'm not significantly allergic to anything they test for. (Again the double-edged sword - I don't have to give up any major food group for life, but no instant fix from it either).
This Friday is actually going to be rather interesting, or at least I think so. I'm going in for a trans-esophageal echo-cardiogram (an ultrasound probe down my throat, so as to be able to get right up next to my heart and get a very clear picture of the structures.) They'll be looking specifically for a malady known as PFO, or Patient Foramen Ovale. Here's the theory on what it is and why it sounds like a perfect match, to me: When you're in the womb, your mom's lungs are doing all of the breahting for both of you, so there's an open passage in your heart that connects the right and left halves, effectively bypassing your own system. Normally, this closes completely before birth, and the halves are completely independent, with one half pumping deoxygenated blood from the body to the lungs, and the other pumping oxygen-rich blood back out.
If I do have PFO, it means that this passage is partially open again, and may be allowing some de-oxygenated blood to bypass the system, which accounts for so many things, in my head. Not only is it potentially directly responsible for the migraines, but also explains the high blood pressure/bpm (more work to do the job if it's a less efficient gas exchange), the extremely volatile and unpredictable nature of my attacks, and the sudden spikes of heart pain (asphyxiation HURTS, thanks to lactic acid build up, and if the cardiac circuit that actually supplies the heart with oxygen gets a spike of oxygen poor blood, that's just what it would feel like. The good news is that if it is PFO, it should be fixable with surgery. This test and possible explanation actually came from one of my former advisors down at Klamath Falls, as he was actually doing a study on this very phenomenon and mentioned that I sounded like an ideal match in my interview. If nothing else, it's a fascinating theory to me, almost beautiful in the elegance with which is would explain so much.
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