The brain! My brain! It's alive! It still works!
Well, apparently there's nothing that a six-month migraine can do to you that a one week hospitalization in a dedicated migraine care unit can't mostly fix. They take no responsibility for my ordinary Zuskatiness, but the headache, she is GONE! Here's how it works.
- Months of unending misery, etc.
- Try 2 rounds of outpatient infusion therapy to mostly no avail.
- Doc sends you to the Big House; pack bag, show up.
- Get a PICC line - oh my! (Note to PICC line install team: it's okay to ask me to cough. Not okay to discuss with each other over my head "yeah, yeah, it was definitely going up but now it's going the right way." I don't care if I was on ativan. Yikes!)
- Start the drugs a-flowin'.
I was supposed to be in for up to 5 days; it ended up taking 7 to break that motherfucker headache. I had round the clock infusion of lidocaine, eventually ramping up to 2.75 mg/min (they said we could go as high as 4 mg/min but it wasn't needed, and sadly I never saw any of the alluded to possible hallucinations, including the butterflies.) Some of you may have followed my hilariosity on twitter with the hashtag #HfMigraine. In addition to the lidocaine I got three times a day doses of magnesium, benadryl, droperidol, and ativan. Then I would sleep sleep sleep. Pee, eat, repeat, or something like that. Eventually they weren't get the results they wanted so they added in a steroid whose name I could never remember probably because I was already so drug-addled. But it did lead to this tweet:
21 May 2012
It can't hurt to have 2.75 mg/min lidocaine infused for over 5 days, can it? We ramped up. Still no butterflies.
Plus, variously, Mg, benadryl, droperidol, Ativan, & now a steroid I can't remember. Me be Hulk Zuska! Fountains o'green puke!
Well, you know it wasn't that kind of steroid, but I thought I was being hilarious. What can I say, drug-addled. Still, I like the fountains of green puke imagery. Verily, the steroid did the trick and the very next day I was vastly improved. So much so that they started saying I would be going home the next day and then I was terrified - what if it was only temporary? What if it wasn't for real? But it wasn't temporary and it was for real and I am at home and I FEEL GOOD! I KNEW THAT I WOULD NOW! I FEEL GOOD! I KNEW THAT I WOULD NOW! SO GOOD! SO GOOD! I GOT NO HEADACHE!
So I've been home 24 hours and I've showered and today I get to take the temporary dressing off where the PICC line was. My arm looks kinda butchered since the hospital dressing ate chunks of my skin and reddened the rest of it and if chemo patients have to endure this flesh-eating drug portal dressing on top of their cancer and the drug side effects I want to cry for all of them just for this. It may be that my skin is especially sensitive since it appears I am now allergic to adhesive in general (wasn't before I went it, but Z-mom is so I guess I get it from her). But still. Let me be clear: I had absolutely top-notch care, in the installation of the PICC line and in its maintenance and care. I was not neglected. The dressing just ate my skin.
Well, to sum up, now I've got one more new preventative added to my drug regimen, I'm on a four day prednisone step down, and my pillbox has more shiny colors that ever before. With the addition of the new preventative I have taken another step along the meds pathway. My trusty two-doses a day pillbox has mostly served me since the day of the stroke in 2003 till now but I think I've outgrown it. It doesn't hold my five-pill dose of one evening med, and now the new med requires three times a day dosing. It's getting too complicated to keep track of whether I've taken everything. I need a bigger box with more compartments. I'm going to steal one of Z-mom's old pillboxes next time I go see her, I swear. She had the Cadillac, large box size four doses a day. I'm still driving around in my Beetle box. I need to at least realize I've upgraded to a Subaru by now.
Final thoughts: I have always had great admiration for nurses because I have seen how they cared for my mother when she has been in the hospital. This experience just reinforced how important good nursing care is to your recuperation. My nurses and nursing assistants were OUTSTANDING. Every member of the team was. Patients: a light finger on the call button goes a long way to making your nurse's life easier. On the other hand: don't try to get out of bed by yourself at 3 a.m. to "save them trouble". You are chock full of drugs and they WANT to help you to the bathroom. They have the bed alarm on you anyway, so don't scare them. Even the people responsible for ordering my meals and cleaning my room were part of healing process. They talked with me and joked with me and lightened my spirits. They asked how I was doing, and they understood enough about migraines and migraine care to ask specific questions and rejoice with progress or commiserate with setbacks.
There is more I would like to say about my experiences in the hospital, things I learned about being a migraineur that I did not know before, but that may be for another post. For now, I'm just happy to be back home and feeling good, and I thank anyone still reading for your patience with this blog's long gaps in posting (and this long post!)