Status Migrainosis and a steroid pack

fall of 2013 YellowButterflyGirl

fall of 2013
YellowButterflyGirl

My favorite season has arrived. And it came in with a bang for sure.

The migraine I mentioned on my post 2 days ago turned into one of those horrific 9/10 (actually 10/10 but I did not end up in the hospital so I will keep it at 9/10 on the pain scale). It was scary because no medications were helping). And I was taking some strong meds prescribed by my neurologist as rescue meds. I called the doctor to let him know that it was my 16/22 days headache day, which is way too many as I got the botox tx on that 22nd day.

I lived through the night and woke up yesterday relatively headache free, but I was back to that horrible “feel like I have been in a terrible accident” hopeless, raw place. I have been in a terrible cycle for several months and at least one night/week my husband spends the entire night helping me survive the unrelenting pain and nausea (and light sensitivity, noise sensitivity, smell sensitivity). I don’t want to admit it but I have been in Status Migrainosis for a while. Status Migrainosis is a serious condition that (this is a broad definition) is when a migraine persists > 72 hours and stops responding to medications; there can be small bits of reprieve (which is what I have identified as me NOT being in status migrainosis).

Bad things can happen during status migrainosis and I have spent years pretending that I didn’t have periods of that. But I have and as I said, bad things can happen (which I don’t want to discuss on today’s post). Most importantly, the migraine cycle must be stopped.

I prayed and prayed that the day would bring some hope.

I did get put on a new treatment plan, which helped with the hope factor (although it comes with concerns that I am trying to not think about right now). The neurologist put me on a 6 day steroid taper that is used to break migraine cycles when the migraines are ongoing and seem to stop responding to medications. I have taken steroids in the past–back in 2001 when I had that horrific onset of chron’s, I was on steroids for > than a year, it was one of the only things that the doctors could use to stabilize me. I had a very hard time coming off the pred (they had me decreasing it by .25 mg—-very slowly) because I wasn’t doing well with the taper. Mostly, it was extremely hard on my mood.

So, I am praying that this pack will work and that I won’t have to go back on the steroids again. Next week, I will begin receiving dry needling in hopes that it will help me (it’s similar to acupuncture but done by a Physical Therapist and has some differences from acc—too much to get into right now). I just wanted to update all that has happened over the recent days.

So, God I pray that you will guide me through this change in treatment plan…and please let it all work…

Now, I am off to focus on work-as in my job.

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