what i need

At Home:
Gluten-free foods
Fragrance-free soaps
Heating pad
Cold packs
Pressure band
“Migrelief” herbal/ vitamin tabs
Caffeine tabs
DHE (Dihydroergotamine) 1 mg
25G Syringes

In The ER:
IV fluids
Dilaudid – preferably 2 mg
Zofran or Phenergan
Any other painkiller, including morphine, will not work.
Being treated respectfully is a plus.
Not having to wait for 2 hours to be seen, while banging head on wall and/or vomiting, is also a plus.
Not being in the room next to the crying baby is a plus.
Getting one of the rooms with a door not a curtain is a plus.
Getting Dr. Baker or Dr. Hess is the best case scenario. Unsurprisingly, they are both women.

In The Hospital:
IV fluids
Dilaudid immediately for acute, intense pain
Zofran or Phenergan for vomiting
Benadryl to prevent reaction to Phenergan
Once 24 hours has passed since last dose of Imitrex (because interaction can be fatal): DHE (Dihydroergotamine), preferably IV. DHE makes pain / nausea worse initially, but after 2-3 doses disintegrates headache at root. Dilaudid works from the top, covering and temporarily easing rather than eliminating. Both are essential. Both are hard to get because one is the strongest narcotic available and the other is an unusual, rarely-used old fashioned ergotamine derivative. Nurses have usually never heard of it and I can hear their thoughts, based on facial expressions: “The doctor gave in and let you have dilaudid, and that wasn’t enough? Now you also need this – D A G or whatever it is? We’ll see about that. Hmph!”
Being treated respectfully is always a plus. Nice, accommodating nurses, a hospitalist who knows what she’s doing…
WC Hospital’s long-time neurologist Dr. Mammoud learning better English would be a plus.
Once I’ve stopped vomiting, gluten-free hospital food tastes better than it has a right to.
Simba and picture of John & girls (comfort objects).
Cell phone, to communicate with outside world.
Comfy pajama pants & socks.

“Migraine Disease,” as it’s beginning to be called, is an invisible illness, to the point where nothing even shows up on MRIs, EEGs, or CAT scans. Invisible inside and out. But by the time I end up in the hospital it is very evident how terribly sick I am. Why, even then, is it so hard to get respect from medical professionals?

What I HAVE is unending, tireless support from my family and friends. A job from which I can’t get fired, with plenty of sick days and vacation time. I don’t take those things for granted. But not hiaving a doctor to care for my headaches right now is unnerving and scary. Dr. T doesn’t have any openings until August. Until then, I just have to keep my fingers crossed.

One Comment Add yours

  1. john says:

    This is beautiful.

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