It's Alive! It's Alive!!!!!

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.

  1. Months of unending misery, etc.
  2. Try 2 rounds of outpatient infusion therapy to mostly no avail.
  3. Doc sends you to the Big House; pack bag, show up.
  4. 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!)
  5. 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. #HfMigraine

Plus, variously, Mg, benadryl, droperidol, Ativan, & now a steroid I can't remember. Me be Hulk Zuska! Fountains o'green puke! #HfMigraine

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!)

 

22 responses so far

  • Miriam says:

    So glad you're feeling better, Z!

  • drugmonkey says:

    sooooooo happy you are feeling better. Hope your garden isn't in too bad a shape!

  • gerty-z says:

    Yay Zuska! Here's hoping to a long, long freedom from the damn headache. Glad that you are back in action 🙂

  • Scicurious says:

    YAY! So glad you're better!!! I hope it never comes back. 🙂

  • bluefoot says:

    Woo hoo!!! This is great news; I'm SO happy for you!!

    I totally hear you on the fear of it being temporary. One of the wierd things about chronic illnesses is that you can forget what it feels like to feel functional/good. And then when you feel good, it can paradoxically make you feel fragile because of the fear that something will happen to tip you back into the illness state.

  • Genomic Repairman says:

    Glad you are on the mend.

  • Asphericity says:

    Hooray, great to hear from you and WONDERFUL to know you are feeling better!

  • D. C. Sessions says:

    On the other hand: don't try to get out of bed by yourself at 3 a.m. to "save them trouble".

    Second that. Waking up on the floor in a puddle of blood does not make the night shift easier.

  • Pharm Sci Grad says:

    Oh wow oh wow oh wow!!! So happy to hear you are home and today is a migraine free day! It is such a weird feeling, waiting for the other shoe to drop and the pain to return, even though it shouldn't... I also respect the hell out of you being able to do anything at all recently, ten days of a migraine leveled me, I cannot even begin to imagine six months. *hugs* Very glad that so much in the last week has gone right... 🙂

  • afsaneh says:

    suz!!!, what were you doing in the hospital? what the hell is PICC line? all the drugs? what happened to you? Did the migraines come back worse? what about botox? N wonder you have been on my mind. Two weeks ago, I was asking Annette if she had heard from you, she hadn't. Send me a note, please? I am so happy you are home now.

  • quixote says:

    Great to hear you're feeling better and are home!

    I had no idea corticosteroids could be an anti-migraine. Ve-ry interesting!

  • A. Marina Fournier says:

    I am impressed that you were actually alive at Month Six--many would have caved before then.
    I am glad that episode is over. I do understand the fragility of hope, as does bluefoot, and the fear that a respite is only temporary--I'm bipolar, and I got that lesson mostly before being diagnosed. Until my son's meds were actually finally balanced, he had NO idea what "good" felt like. Now that he does, he's equipped to squawk when he's not at the sweet spot.

    Had never encountered droperidol before, and had to look it up. Oy! You can get some amazing pill caddies these days. My MiL has alerts on her phone to remind her to take those which are not breakfast or dinner meds, which is what I'd have to do if I were doing 3-4x daily dosing.

    Does your doctor know of such migraineur-specializing hospitals in either CA, where I live, or in the Carolinas, where another migraineur friend lives? Would merely searching with "hospitals specializing in migraine treatment" get me the right/best ones, or would I be wading around in muddy info dumps?

    • Zuska says:

      I'm going for a follow up in about a week and will ask about CA and the Carolinas. But while I was in the hospital, I heard that one patient comes to this place from Colorado, others from New York, one drove up from Washington - it's pretty famous, but it does train and send disciples out to other places.

  • Ruth says:

    Have you asked your pharmacist about pill-boxes? Don't know if they do this in the US, but in the UK, if you're on umpteen prescibed medications, to be taken at various times of day, the pharmacist will issue them in sealed trays, one tray per week, ready sorted. My father-in-law has them.

    • Zuska says:

      Omg that would be lovely. I will ask but I am sure that even if they do this it is an extra paid service. But would be worth it.

  • Pteryxx says:

    Conga rats, and you sound wonderful - clear and overjoyed.

    • Zuska says:

      I'm so glad to know that comes through in the post - I DO feel clear and overjoyed! I told Mr. Z tonight that all the times previously when I thought I was feeling good I was feeling crappy. My two modes before were actually crappy and shitty, not good and shitty as I had thought. Now I really know what good is. And I want to always have it. Or at least for a large percentage of the time. So far I have had ONE WHOLE WEEK OF GOOD!

  • PeggyL says:

    So glad to hear some good news! Hope the goodness continues.

  • anon says:

    I hope your recovery continues, the headaches never come back, and that you can live your life pain-free and never have to think about this again.

    That said, if you don't mind talking about it (or my asking as an anonymous poster), I am curious to know why it took 6 months to get to the hospital? You mention two failed therapies and an order by the doctor. Were the attempted therapies a long-term regimen? And was there any particular event (other than neverending pain) that prompted aggressive therapy? I myself have been suffering debilitating headaches off-and-on for about a month now. I have no idea what's causing it - possibly some allergy although I do not have respiratory symptoms.

    All the best to you. No one should ever have to live in pain.

  • Cara says:

    I'm thrilled for you! Nice to know what "good" really is now.

  • thebewilderness says:

    I am so happy that it is gone finally.
    Far as I know there is no charge for sorting your meds in bubble packets. Some pharmacies do and some do not so it is a matter of finding one that does.

  • [...] sure has been, for two months.  I had that triumphant return to the blog at the end of May - had finally broken that evil six month headache, was feeling great, life was [...]