general update.

I have had an unrelenting headache for three days. It isn’t too severe, but nevertheless pricks and pokes at me and brings accompanying aura, allodynia, and irritability. I’m not happy about it. For some reason, nothing I take is working.

I had my last appointment in Ann Arbor yesterday for the double-blind phase of the CGRP chronic migraine study. My friend who is the research nurse asked the questions, had me fill out all the surveys in the diary, did another EKG, took a bunch of blood and a urine sample. I got a free ice / warm pack and a water bottle from the drug company; a $10 gas card; and a check. J ended up believing that I did receive the real medication and not the placebo, because while my headaches stayed just as (or more?) frequent, they decreased in severity. At my next appointment, in a week, I will begin the Open Label phase of the study, where I will receive the real drug for sure (I won’t find out what truly happened during the double blind phase until the study is totally over). The unfortunate things: the open label phase was supposed to be extended from 10 months to 5 years, and it hasn’t yet been; also the open label phase uses a lower dose than the double blind phase. So if I was getting the real drug, this “improvement” over the last 3 months is the best it is going to get. The positive news, and really unbelievable to me, is that I will still get paid to participate.

Which brings me to the other significant topic right now: money. J got very inspired recently to push and push until he found a more lucrative position, one that could really support us. He has a lot to offer, and a pretty general Master’s degree, so to me, this seems very doable, he just has to not give up. The first attempt failed but only because the CEO said “You’re too good for this job,” and pointed out the pay would be lower than he’s getting now. Currently, he is working within his current agency to propose a business model for keeping them afloat, with him as the developer; however we don’t have a lot of hope in this area because things tend to move so slowly. There are two other private sector positions he is looking at. We won’t stop until this goal has been achieved.

In the meantime, we are working again on Migraine365 and my Migraine Diaries project. The Migraine Diaries #1: Diagnosis [1981] is available on Amazon Kindle now for $2.99.

As far as my health, I stated in my entry “Comorbid” that I really thought I had another serious health issue going on, possibly an auto-immune disorder like EDS or POTS. But, I noticed that after 3 days of taking my heart rate every morning upon waking and getting up, the significant increase upon standing stopped. So it seems to be something that happens only when I’ve been bedridden for a number of days because of migraine. I did get tested for everything by Dr. S, and no auto-immune indicators showed up. I was relieved but puzzled.

In thinking over all the symptoms, I think that what is going on is increased anxiety. It’s something I’ve noticed before when my migraine pain has decreased. In 2002 when I received my first Botox treatment, my improvement was so significant that I had no idea what to do with myself and became depressed, I think both from so much extra time being available to me (this was before children) and because my serotonin needed something to do. A different sort of rebound effect. This time, we have a lot going on to cause anxiety: very little money, a preteen worried about extra standardized testing, both girls’ birthdays and the accompanying social and financial stresses, our kitten having feline leukemia (no symptoms yet), J’s PTSD bringing mood struggles. When my headaches are bad, I’m restricted to bed and sleep, able to feel only my pain as we experience fight-or-flight survival of each day. Instead, now, I am experiencing all the anxiety that comes from actually living a life. A difficult and stressful life.

I see Dr. Mitzi next week, and I am planning to talk to her about this, perhaps reducing my pain medication and adding something for anxiety. I want to be able to live my expanded life in balanced enjoyment!


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