Migraine365 & Dr. Mitzi

My appointment today with Dr. Mitzi went very well. I explained that my headaches had improved in severity but not frequency, and that I’ve been having a lot of trouble with anxiety. She said she doesn’t often prescribe benzodiazepines, but that she would for me. I told her that I see a pain therapist twice per month and that things are just very stressful right now, and she seemed receptive. She asked if I’d tried Klonopin, and I said no. She actually ended up giving me both Xanax and Klonopin. The Xanax as needed during the day (it doesn’t make me sleepy) and the Klonopin every night for more longer-acting help. I told her I wanted to decrease my Percocet, so she did, and made it clear that a few months was all I’d get of the anxiety meds, but I was really really pleased.

Here is a screen capture from http://www.migraine365.com. J is working on improving the appearance of some of the originals so they’re clearer.



Also don’t forget The Migraine Diaries on Kindle! #1 available now for $2.99 

http://amzn.to/1zdORtr

#2: Election Day [2008] available March 17.

Thanks for your continued support!

~elizabeth



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38 Weeks

I finally gave in and went to the ER last night for a migraine I’d had since Monday. I’d gotten as many as 6 hours of relief at a time from Imitrex, but the thing just kept coming back. It was the longevity that broke me… not the severity.

This streak of not needing the ER has been one of the longest of my adult life. It certainly is by far the longest since I went chronic in 2004. 38 weeks. 9 whole months. I would have loved to have gone a whole year, but I need to see this for the victory it is.

Oddly, I didn’t get an IV with fluids last night, but I was treated relatively well and I got the meds I needed in two IM shots. They took a little longer to work, but lasted longer. And, fortunately, I wasn’t too high on the pain scale, which is how I try to do it now, to go before I’m at that point. I’m not always able to though, my May 30 ER visit being a prime example since that was my worst headache ever.

I mentioned in a previous entry that J thinks I’ve been getting the real drug in the CGRP study. On Wednesday, the open label phase begins and I will receive the first subcutaneous injection of what we will all know is the real thing. Unfortunately, the dose is decreased for open label. So if I have been getting the actual drug, this slight improvement I’ve had will become even more slight and I could regress a little, which I’m not looking forward to. But, if I have been getting the placebo, I should improve more (the former improvement being due to some other factor).

I see Dr Mitzi tomorrow and I am nervous about asking her for anti-anxiety medication. I really feel like having some would help, but I don’t know if she prescribes it. I guess I will just have to find out. I know she’ll help me any way she can.

Well, it’s time for me to get up out of this bed. I am going to head into the Museum for a few hours – it will just be nice to go somewhere, and I can’t think of anywhere else I’d rather go. ❤️

Don’t forget about The Migraine Diaries #1, available on Kindle! (Click here to check it out.)

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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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The Migraine Diaries: Three [1981]

This is the chapter of The Migraine Diaries that I expanded and published on Kindle early this morning.

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Scuffed brown shoes, slither-slap, slither-slap on the worn but clean linoleum floor as I wait anxiously for the nurse Dr. Brown said would be arriving shortly. I have what they called a “gown” on top but this is nothing Cinderella would even have worn to clean out Lucifer’s litter box. Blue paper, white ties. Which are tied. I start swinging my ponytails back and forth across my shoulders, enjoying the swish-swosh in time with the slither-slap still sounding from the floor. Woah the room is spinning. Stop that. My formerly musical shoes now press down firmly with tension and I grip the vinyl trim of the examining table. The movement of the world stops but the dark spots in front of my eyes don’t. Neither does the dizziness – for turning my head a few times? And okay there it was, the first foggy pain unfolding like a delicate flower…

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The Migraine Diaries on Kindle

Late last night, I completed my first short story for digital publication, a much expanded version of The Migraine Diaries Three [1981] already found on this blog. J used a picture of me at the age I was in the story and created a Migraine365-esque cover for it; I am planning to publish “chapters,” about one per month.

The Migraine Diaries #1: Diagnosis [1981] can be purchased here for $2.99. Please, if you have a spare $3 lying around today, download a copy, and help me promote it ~ increased awareness about migraine and chronic illness benefits all of us in the pain community. Plus, I think you’ll enjoy it!

I have been writing stories, mostly autobiographical, since I could hold a pencil. Publishing my writing has always been a dream I never thought I’d accomplish. I appreciate how easy it is now to achieve this goal with ebooks, though I myself still much prefer to hold a book in my hands. 🙂

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The Migraine Diaries: Prologue [2014]

As J and I are entering a new chapter of our lives, on our miracle Zo’s sixth birthday and possible dawn of financial solvency, I was named one of the seven migraine blogs to follow in 2015 by a new migraine tracker app named Migraine Buddy (currently only available for Android). The thing is, as most of you know I haven’t been very active, and Migraine365 has been in suspension. So you know what? That period of inactivity is over. And I am taking that momentum and launching my Migraine Diaries on Kindle, available as fictionalized memoir-style short stories, based on my experience, starting with what is posted here and expanding significantly. Stay tuned!

lady migraine 365

At this point in my life, without assignments or deadlines, I can only write what I know best. Recently I find it easier to chronicle my headache history, which is firm and rooted, rather than hashing over my still painful and uncertain present. I have fictionalized by renaming, combining, and filling in, but never exaggerating. For my own convenience (but with annoying difficulty!) I have moved these chapters from a separate blog page to individual entries. Thanks for reading; and as always I am grateful for your patience and understanding.

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