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