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
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