Thursday, March 21, 2013

Home Infusion with peripheral IV

The Set-up

Here's whats going on.  My episodic migraines have once again morphed to essentially daily headaches.  I put up with this for a couple of months hoping for the best.  You know ......... against all odds, this nasty shit will just slither away under the same door it snuck in.  But of course that hasn't happened, so I heaved a big sigh and made an appointment with my ever-patient headache specialist.

Bad assumptions

We decided it was worth a trial of DHE (dihydroergotamine) IV therapy to try to turn it around.

Now I've done this before when I was in Michigan, in the hospital, under the care of MHNI, the Michigan HeadPain and Neurological Institute.  It wasn't exactly fun, but it was way tolerable and it definitely helped.  Of course there were many other interventions during that hospitalization, so it's kind of like comparing apples to oranges.

I live in a relatively small town, and my doctor's way of offering DHE IV therapy, if you really don't need hospitalization, is through a home infusion service.  The nurses come around to your house to administer the therapy, or that's what I thought I heard him say.  Maybe that is what he said.  ?????  My assumption was that they would come around twice a day and administer these IV drugs just like they did when I was in the hospital.  Never assume.  Why haven't I learned this lesson yet?  God knows, I'm old enough to know better.  "Good," I thought.  "I like nurses."  They tend to be really competent, good natured, intelligent, caring, etc.  And they're good chatters.  Besides, my son is in nursing school.  You can tell this wasn't one of my razor sharp thinking days.  
I should have known better when I learned it was Walgreens that would provide my service.  Walgreens?  When I was a kid, they sold aspirin, Carter's Little Liver Pills, bubble gum, cheap toys and acrylic yarn and maybe a knitting needle or two.  Perhaps there's a connection there with syringes.  Oh yeah, and ice cream and maybe whiskey, under the counter, during prohibition.  Actually, that was a little bit before my time.

So, I decided to go for it, assuming that in a day or two or three or next week, things would get rolling. No siree!  No sooner had I arrived home from the doctor than Walgreens called and said their nurse would be out at about 8:30 pm. the same evening, and 'was that okay?'  I agreed, which was, of course, another ill-thought out decision on my part.

I hadn't washed my frizz bomb hair in about a week, and I was due.  It's a project requiring three hands and a lot of time, water, and patience.  Not possible with an IV in your hand or arm.  Four days into this nightmare, and "bad hair" took on new meaning.  Also I hadn't thoroughly researched what my insurance would pay for - or not.  And I had other things on my schedule for the  week, which mostly got canceled.

Big Nurse                                                         

That same evening nurse Tori arrived.  She had all the good nurse qualities mentioned above, and I liked her.  However, she delivered some disturbing news.  She would teach me - in about 3 minutes - how to do the infusion, do the first one herself, and leave all the rest to me.  I was in low to medium-grade shock.  I had imagined myself leaning back in my Ikea chair by the fire with a cup of tea while this charming, highly-skilled person ministered to my needs.  No so.  This was to be yet another do-it-yourself project, and believe me, we have scores of those around our house already.

She put in the peripheral IV line after 2 stabs at it, which isn't too bad in my case.  She administered the (2) meds with a saline flush at the beginning, middle and end.  Then she whipped out a paper for me to sign, claiming I was comfortable doing these procedures on my own.  Noting my only too obvious level of overwhelm, she politely suggested coming back in the morning to help me lay it all out and to watch me do the infusion myself.  I agreed, thanking the great spirit that I had a reprieve.  Ultimately, I foolishly signed the paper, still not remotely comfortable with administering my own IV meds.

Bags of nameless supplies

This home infusion process requires the following:  alcohol wipes, pre-loaded syringes of saline, different syringes for both meds, filter needles, two different (kinds of) medication vials, stupid little plastic things to snap the glass top off one vial, a little socky thing for over your arm or hand, and, with all the gear in it, another little baggy containing a set-up for changing your IV line.  This baggy contains  assorted syringes, needles, sterile paper "cloths," IV lines, clips, endings, etc.

All these things and more are in unlabeled plastic bags with no count on the bags so you don't know how many of which things are in each bag.  Also there may be a combination of of two or three things in one zip lock bag, or maybe not.  In some bags there are only, for example, saline syringes.  All these little and big zip locks are thrown together in, you guessed it, another big plastic bag.  I was asked to sign for receipt of these supplies so they can charge me and/ or my insurance company for what they delivered.  Of course even if you're lucky enough to have so called "health" insurance, we all know they don't shell out for anywhere near all the services or supplies you receive.  If this is a confusing paragraph to read, that's because it was a very confusing jumble of totally unfamiliar stuff.

By midweek, after 3.5 anxiety-fraught days of administering my own IV meds, I needed more supplies.  A young delivery guy came loaded with more bags of stuff.  I asked the delivery guy how much this jumble of supplies cost.  Dumb question.  Of course he didn't know.  I could tell, with great difficulty, after laying it all out on the table myself, there was more than I needed, but not the same amount more of each different item.  I called Walgreens.  In spite of the fact they were selling me - and my insurance company - these supplies, neither the pharmacist nor the supplies guy could tell me the cost of anything except the flat rate charged for the loose plastic stuff that didn't contain any medication or saline (empty syringes, needles, etc).

Home Infusion

DHE, delivered intravenously, always causes nausea, so you have to first deliver an anti-nausea drug.  In my case, it was Reglan.  After a 2 or 3 days of this drug, I began to get more and more jittery and anxious.  In Michigan they used diphenhydramine (Benedryl), so my local doc agreed I could switch to that.  After that change I felt somewhat more confident with the process.

However, peripheral IV lines are not ideal.  After a couple of days they they tended to clog up, leak, blow out my vein, etc.  And it was alarming because not being a nurse, I really didn't know how far to push it or exactly what the consequences were of making a mistake.  It was also a little painful.  In a 9 day span, I had the IV line placed or replaced 4 times.  Of course it always happened at night about 10:00 pm., never in the morning.  

There's more, but that's enough.  You get the idea.  The day after I finished my 9-day course of meds, I got a headache, and one the day after that.  Very frustrating and depressing.  Would I do this again?  I don't know.  Certainly not in exactly the same way.  I've learned some things, and I would insist on clearly labeled containers of supplies with an accurate count on each.  I would talk to my doc about different nausea meds or a combination of nausea meds.  And I might consider going to an infusion center twice a day where they know what they're doing.  Live and learn.

Since then things have been looking up.  I'll tell you about that next time.

Friday, March 8, 2013

Livin' the Life ........ with migraine


To prevent or reduce frequency and severity of headaches:

Nail parlor.  A smelly place.  Don't go there!
Puerto Vallarta, Mex. during the Day of the Virgin de
Guadalupe.  Crowded and noisy but outside.  I can
tolerate crowds for a little longer outside.
  1. I ....... eat regularly, always carry food (fruit and nut bars) and water
  2. Eat good "clean," real food, very little packaged stuff.
  3. BREATHE! I don't do this too well.  I tend to take little tiny breaths, and then, when I can't stand it any longer and am beginning to turn just slightly blue around the lips, a big gulp of air.  Not good.  You can do better.
  4. Always carry abortive and pain meds with me.
  5. Always carry earplugs, sun glasses and/ or specially tinted lenses available from and
  6. Always carry a neck pillow in the car, plane, train, etc.                                                    
  7. Exercise: walking and yoga regularly, swimming and biking whenever possible.
  8. Rest when I need to.  I believe in naps when you need them - though not all the time.
  9. Communicate: blog, talk w/ my friends, husband, sons, etc. Keep in touch. 
  10. Keep in touch w/ my son who also has serious migraines; although, thankfully, they're not as bad as mine.  We share tips.
  11. Avoid loud, noisy, densely packed situations.
  12. Avoid "smelly" places (cigarette smoke, chlorine, nail parlors, chemical fumes of any kind).
  13. Limit screen time and choose to watch TV, movies, etc. that don't over stimulate me.  Use tinted lenses.
  14. Schedule my life's activities to suit my tolerance level.
  15. Try to pay attention and be aware of how I'm feeling so I don't wait until things get bad to "take action."  Don't beat myself up if I don't "get it right."
  16. Make regular visits to my mental health therapist to help me unload and come up with new ideas.
  17. Continue to do things that are really important to me and that I enjoy:  art, taking care of my grandson, hanging out with friends and family, traveling, spending time in sunny places, reading good books, spending time outdoors.                  

When I'm not feeling good

    My hideaway

  1. I......retreat to the futon in my room which is my own private hideaway and not a bedroom
  2. Use a heating pad to help me relax (low back or  stomach)
  3. Use Ice packs for face, neck, shoulders, eyes
  4. Listen to music and relax; read if I can
  5. Take my medication:  preventative, abortive, pain, sleep meds.  

     Cannabis.  When things are             really bad, I use medical marijuana:

       This item deserves some explanation because there is a lot of misinformation out there.  I'll give you the benefit of my experience and you can use it in whatever way you choose.
        About once or twice a month when things get really bad, I use medical marijuana.  I do this on days when I awake with a very painful migraine, and I know I'll be vomiting repeatedly - very soon.  I take my DHE (abortive) by injection; then I use my vaporizer to inhale marijuana as medication for the pain and nausea.  Cannabis does not make the migraine go away.  The DHE does that - eventually.  But marijuana relaxes me, eliminates the nausea, reduces the pain and lets me sleep through most of the worst of it.  Sometimes I have to repeat use of my vaporizer in a few hours.

Volcano Vaporizer

I count myself lucky to live in the State of Washington, which has a medical marijuana law.  I have a prescription from my doctor.  I get my medication from a legal, storefront distributor where they help me choose symptom-specific strains of the plant to suit my needs.   I use a Volcano Vaporizer to ingest it, which means I don't have to smoke it.  I hate smoking.  I've never smoked, can't stand the smell of cigarette smoke which turns my stomach and will eventually give me a migraine.  So the vaporizer is the only way for me.  Oral products do not work for me nor does the sublingual tincture.

The next step:

When I'm in a place of chronic daily headaches, I am usually planning what to do next to return to episodic migraines.  Right now I'm on a 10 day round of IV DHE which I administer to myself at home.  The nurses from a local service come around to change the IV line if it clogs or gets too sore.  More about this in my next blog entry.  That's about all I can think of right now; although there is always more.  "Good night and good luck!"