Plan of Attack

Now that I've had a few days to let the un-awesomeness of my most recent neurology visit sink in, I'm solidifying a plan of my own, since the new doc seems to have a complete lack of plan. There are a bunch of things effecting my choices for the next month, so listing them first.

Things coming up:
PCP doc appointment in a week and a half
I've been approved for Physical Therapy (6 sessions I believe), I just need to get it scheduled
I can't renew my maxalt prescription for another six days. (and I only get 10 a month)
Ursulmas in two weeks
Radcon on the second weekend of February
Estrella War & travel & possible tooth work in Mexico taking up about two weeks at the end of February / beginning of March

There is *never* any good time to be ill, especially when you are self-employed. Never. And I have a super busy time coming up, and I need to make stuff to sell. Not to mention actually continue getting out kickstarter rewards at a snail's pace, in between trying to pay for living expenses, business expenses, and the other unavoidable things that come up. I also need to get enough exercise that my body and mind feel at least ok, and enough social contact and enough joy in what I'm doing that I don't become super depressed and unable to cope. Like most artists, I have an on-again, off-again battle with depression which can make everything harder.

But... I need to do this thing (getting off of various medications long enough to prove to this doctor, and any doctor who looks at my chart in the future, that I have a problem beyond MOHs), and there really isn't going to be a great time. I know that I can't just stop everything all at once. I would end up a pile of misery and probably in the ER so fast that there would be no point. I am not particularly worried about the caffeine and chocolate, so I am going to worry about those last, and keep them around while I am doing the really hard thing - weaning off of analgesic medications.

So... here is the plan:

Week 1 (this week)
try to gently reduce narcotics at least a small amount, treating only what threaten to be the worst headaches. Use topical treatments (anti-inflammatory patches and gels with things like menthol, ice packs) as much as possible. If needed, use one of the two injectable imitrix pens I just got from my pharmacy.

Week 2
refill maxalt
When I have my doc visit with PCP explain what is happening, bring article that suggest supportive therapies, and ask for help with some/any of those. Probably at least a five day steroid pack since I have had those before, possibly other things if they seem appropriate. Also discuss rates of reducing medications and if I can chance taking a very limited amount of ibuprofen or other medications with food, is there anything else that might help a little bit?
Start that ^^^
slow taper off of caffeine (probably substitute partially with decaf, or find an acceptable herbal tea as a chai base to keep that enjoyment of life thing happening)
Also try to set up my physical therapy appointment for neck & migraines

Week 3
aggressive tapering off of narcotics, use maxalt, imitrix, and possible other supportive meds to treat worst of headaches, Zofran for nausea
slow taper off of caffeine (probably substitute partially with decaf, then all with decaf, and/or find an acceptable herbal tea as a chai base to keep that enjoyment of life thing happening)
eliminate chocolate, make sure I have other treats around that I enjoy (not that I eat a lot of chocolate, but I start wanting it as soon as someone says I can't have it)

Week 4
taper off of maxalt (also it may be used up at this point - I get a limited # a month so doubt that anyone aside from this current neurologist could think they are adding to any MOHs), only use up to 2 x a week if needed, or the imitrix injection (find out how much these cost as self-pay in case insurance won't pay for more)

Now comes the tricky part. Most headache specialists agree that two weeks isn't enough to prove that I don't have MOHs, they say that it takes one to three months to know for sure. At this point my goal will be to limit my use of any drugs that might cause MOHs as much as possible, but by this time I will also be traveling. I need to discuss this with my regular doctor, since I doubt that the neurologist will be any help. At this point I also need to check back in with the neurologist and let him know what I have been doing, and that it (probably) isn't working. If I can start the process of being referred to a new neurologist at this time, it is a really good idea. Hopefully I would then have an appointment not too long after returning from Arizona. If I can keep the amount of drugs I am using down while I'm traveling I can then tell whoever I end up seeing next about it, and they will have to move on to what they can do to help me, rather than blaming MOHs and me by extension.

My next referral should probably be to the headache center at OHSU, since I haven't gone there yet. The new doctor there should have her credentialing done by then, or I can try to see the top guy there, despite his apparently not great bedside manner and issues with women (according to a lot of anecdotal accounts at least). I can go in and choose how to present my case, concentrating on the tie in with neck pain angle. Especially if there is any addition pain or lessening in pain as I do physical therapy. I go in with the goal of wanting to try an occipital nerve block (because I want to know if this will help me at all), and discussing any other treatment options.

I also need to keep in mind that I simply might not be able to do this. It is great to have a plan, but if I get to a point where I am so miserable that I really can't stand it, that is when I need to go to my doctor and ask for more help, since the neurologist isn't offering any. That may mean needing to see a new neurologist first, and bringing the problem to them, if my doctor doesn't feel like she can do much. I want to be able to go with the entire issue taken care of, but if I can't, well then I simply can't. It is easy to say that I will be able to follow through, but everything changes when you are a crying, throwing up, mess, and simply wish someone would put you out of your misery.