visited my pcp and new gi doc

Today I had an appointment with my primary care physician, Dr. Laborie, and it was really good. Yesterday I had a first appointment with a GI specialist, and it was also good! Also, I at least temporarily seem to be out of my awful migraine loop. It appears to have abated on it's own for a bit. I was even able to do some partner acrobatics and aerial yoga with inversions, and not have huge throbbing head rushes after returning to being upright! It seems like a good time when I can actually try to start taking less medication.

So first the PCP appointment:

Dr Laborie did a great job listening to what I had to say about the new neurologist, and was really receptive to finding ways to support me while I go off of all the medications. We talked about a lot of options, including a cleanse (which we decided not to do because of my current GI issues). The cleanse was considered because inflammation is linked to migraines, but because of my complicated GI "stuff" it really isn't a good idea until my stomach issues have died down a bit. She also suggested some herbal and topical anti-inflammatories. I have used all of the topical she can think of, but she suggested sour cherry juice and turmeric as internal ones. I picked up some sour cherry juice at the store, along with more probiotics, and I already have an awesome ginger-turmeric tea that I love. One of the great things about that conversation is that she got to hear the huge number of over the counter topicals I've tried, and the other herbal things I've used, and really see how much research and work I have done on my own already.

She gave me two additional prescriptins to help as I wean off of other medications. One for tisanidine, a muscle relaxant that I can take on a daily basis. Since I had been on both baclofen and tisanadine before and had some success with them, this seemed like a good plan. She also is giving me a 7 day steroid progression, that I can use when I feel it is appropriate. Since it can adversely affect the immune system, I'm going to wait until after Ursulmas to start that. If I start on Monday, then I will have two weeks until my next event, so won't be exposed to a ton of germs (hopefully) until Radcon.

We discussed that I thought I needed to start looking for the next doctor, even though I was going to follow through with the medication detox. The fact that he said I'd need to find someone else if taking me off of all of the meds and caffine didn't work is something that she was really surprised by. She wondered if he was just saying that there was no Plan B to motivate me to actually stop my current medications, but both Marcus and I are pretty sure that isn't the case. The current plan is for me to be off of everything for 2 weeks, then see the doctor. At that point I will ask if he would recommend seeing a headache specialist, specifically OHSU since it is where Dr Laborie suggested going next. Hopefully his recommendation, along with that of my doctor, will make that switch possible. And I plan to be off of any suspect MOH medications for a month so that when I start with someone new, it will be with a clean slate and new baseline, so they won't automatically assume all of my problems are related to MOHs.


So, GI doc:

She was great, listened, suggested some things to do right away, ordered a stool test, is getting and going over info from my last colonoscopy, and she'd going to call me. So VERY satisfactory, great bedside manner, really open to listening to what has been going on. Didn't try to pass the buck and blame migraines or anything else. Also suggested that I take an anti-convulsant for some of the stomach problems. Already more than the last GI doc I saw at that office several years ago, so great!

The plan goes... not so well

I've been really migrainy for several days. Maybe it's stress, maybe it's the weather... but it is really hard to stop taking medication when you will end up in excruciating pain and can't stop throwing up. Three days of nausea and no sleep and a hard time eating at all, and this is WITHOUT quitting any meds, and there is no way I can do it until this current bout of awful is done. I used my injectable imitrix for the first time yesterday, and it did the trick, after about an hour the migraine was gone, and I was able to eat again after a couple of hours. I woke up without a bad headache this morning, and it wasn't until the afternoon that I started getting migrainy again. Around six I got severe nausea and gave up and used another of the injectable imitrix pens. That is two out of four... I really hope this is just a bad week and that next week is better, because this is stupid. Luckily I have appointments with the GI doctor and my PCP next week, and I can talk to them about this. I'm not sure if my other GI issues are triggering the migraines right now, but if they are, maybe getting them under control will help. If nothing else, hopefully my PCP can think of something that will help.

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.

The New Neurologist

I had my first appointment with the  new neurologist on Friday, finally, after waiting since June to see a neurologist. While it wasn't as bad as the absolute worst appointment I could imagine, it was pretty bad. Marcus came with me, as I've found that having a large guy around makes doctors take me more seriously (I will post another rant about that I'm sure), and he was managing to barely keep from exploding at the guy. The new neurologist is basically useless. He is convinced that my neck issues have nothing to do with my migraines (despite ice on my neck being the only thing that helps them aside from medication, and any kind of neck inflammation triggering migraines), and his only plan of action is to have me quit all of the medications I am on for pain and also quit caffeine and chocolate. He is completely sure that rebound headaches are the problem and that I will be better after I do this. When asked what the plan is if this doesn't work, he said there is no plan B, I would have exhausted all of his ideas and I would have to see someone else.

About rebound headaches: These are often refereed to as MOHs (medication overuse headache syndrome). MOHs are really easy for neurologists to blame chronic migraines on. I undoubtedly have some rebound headache adding to my regular headaches, because like most chronic migraine sufferers, I am forced to over-use (the official determination of this is if someone uses them more than two days per week) various pain medications to handle pain. When you get migraines 2 out of 3 days, you have to. When weighing having little relief of almost daily migraines with possibly having more headaches because you are using medications to control the really bad ones, it isn't much of a choice to make. Here is a good document talking about these headaches:

http://www.pacificrimheadache.com/wp-content/uploads/16.-Chronic-Migraine-Medication-Overuse-Headache.pdf

The really problematic thing is that often doctors want to think that this is the only problem. This is because blaming the headaches on overuse of medications is a really easy way to transfer blame to the patient, and to say that the patient isn't helping them with the problem. This doesn't mean that I shouldn't try to follow a plan of going off of medications temporarily, at least to prove that this isn't the case. Especially since it seems to be the knee-jerk reaction of all doctors to try to blame MOHs for my problems. When asked what he could do to make this process easier, the new doctor replied that he couldn't help, I would have to do it all on my own. Here is another good article that talks about how MOHs are often over-diagnosed and the sorts of supportive therapies that can be provided to help with going off of various migraine and pain medications:

http://www.pacificrimheadache.com/wp-content/uploads/2.-Rebound-Headache-MOH1.pdf

The new neurologist is also completely ignoring that I had nearly daily migraines before I ever had any opiates or triptains. I fist was treated with baclofin, a low-level muscle relaxant, when I was seeing Doctor Peterson at the Oregon Headache Center. This was over ten years ago. The baclofin worked for a while, and then stopped working. At that point in time, I was also still able to take NSAIDs, and that largely kept me in a place where I could keep up with daily activities by dulling the edge of my migraines enough that I could function. And I do mean dulling - I was still at a 5 – 7 on a pain scale many days.

Because of the nature of my body and how easily it adjusts to chemical changes, I tend to take a lot of things and then in 3 -6 months they stop being effective. Because of this, I already have to take myself off of any analgesic drug I am taking at least a week every month so that it still does anything for me. Otherwise I would keep needling stronger and stronger doses, and would soon have to take truly toxic levels of things in order to have any relief. I already have to occasionally switch between triptains (usually imitrix/sumatriptain and maxalt/rizatriptain) to keep having something that will work as an early treatment for migraines, and I have to stop any narcotics I am taking long enough that I can take a low dose and have it be effective. I have found this means not taking any for at least a week every month or so. I can usually balance using the two kinds of medications so that I have something to take to keep me from having an ER trip because of a migraine that is a 9 – 10 on the pain scale more than every several months or so. I also periodically take myself off of things for at least two weeks, mostly as a matter of personal control. I hate the idea that I am totally dependent on a single medication, or medications in general. I usually don't take myself off of everything at once though, that is needlessly cruel. Of course this isn't taking myself off of everything for two weeks (what he says I need to do), let alone one to three months (what most other professionals in the field seem to think is needed in order to prove that they aren't the culprits).

Many people have never had to deal with pain that is a 9 or 10 on a 1 – 10 pain scale, and they are very lucky. To put it in perspective, I once had a broken foot and danced on it for a week before figuring out it was broken and finally getting x-rays. All three of my broken bones have been maybe a 6 or at worst times throbbing to a 7 on that scale. A 9 is where I have to cover my eyes and curl up into a little ball on the couch. A 10 is where I can't keep myself from crying or moaning in pain, and at that point I'm often throwing up uncontrollably and end up collapsed on the floor with bag to throw up into. I've been really thankful to have someone living with me for the last five months, because it keeps me from getting to this point. He insists I do something about the pain before it gets so bad.

I am, I think, justifiably upset by the idea that I have to do this by myself, without any sort of support from my neurologist. However, I do think I need to do it in order to make sure that no other doctor I see wants to blame all of my headache problems on MOHs. At the appointment on Friday we didn't ever get around to talking about the things I wanted to find out more about, other procedures such as occipital nerve blocks which might give me real relied from my problems. My new plan of attack is to try to get my PCP to do some supportive therapy while I go off of analgesic medications (probably a week long steroid pack since they have helped me quite a bit in the past when I was in a hard to break pain cycle – and once again I think that indicates that inflammation is the big culprit), then have this current neurologist admit defeat and recommend that I go to a different headache specialist. Then I will try to find someone who does things like nerve blocks (maybe look at headache message boards to find recommendations?) to see next. If that doesn't work, my next step is to try to go to a bigger headache center with better specialists, probably out of state.

My hope is that by sticking it out 'till the bitter end with the new doctor, I will be able to keep using my insurance as long as possible. I realize that at some point, probably if I end up going out of state, I will have to start figuring out how to self-pay for appointments and some procedures. I already have to self-pay to get certain medications, which is incredibly hard for me. As an independent artist, paying to see a headache specialist is going to be difficult. The last part of my plan is figuring out financing, and to that end I've begun setting up a patreon account. If you are unfamiliar with patreon, it is a website, that like kickstarter, helps creators get funding for their projects. The difference is that people subscribe as patrons to various artists, give a certain amount every month. It is set up so that you can get different things for different levels/ amounts of subscription, and you can unsubscribe whenever you want.

My patreon account makes no bones about being in place to help me cover medical expenses as well as pay for new creative projects. What you get by contributing varies by level, but includes access to high quality images for personal use, downloads of new coloring pages, access to tutorials, being entered into quarterly drawings for original artwork, and a discount on my etsy site. I am still putting content together, but here is a link so you can check it out: https://patreon.com/vandy