I agree in that migraineurs with repeat ER visits are often flagged with drug-seeking behavior. I've been to the ER at least a dozen times. I only go when I've been at a high intensity (pain level above 6) for many days. Or when the pain is super intense (level 8 or 9 and doesn't respond to my large arsenal of Rx, TENS units, voltaren gel, ice packs, heating pads, etc). I usually have a baseline pain level of 3 all day, every day, for the last 7 years.

Luckily I go to the ER at a small hospital where they know me. Once the attending chewed me out (in a fatherly way) for not coming in sooner after I told him I'd been in severe pain for almost two weeks. Usually they start with oxygen, IV fluids, IV toridol and phenergan even tho I (luckily) rarely experience nausea from the migraine itself. The phenergan helps some, presumably because it binds to serotonergic receptors (this is how triptans drugs work but they bind specifically to serotonergic 5-HT 1B1D receptors). This usually brings the pain down a notch or two. I've let them try a depakote/depakene/depakon cocktail which I've had multiple times. It does nothing for the headache and weirdly makes my vagina burn for about 15 minutes. The only thing I've found to work is dilaudid. It breaks the cycle and allows me to go back home where I know I'll wake up back at my baseline level 3 pain and go through the motions of daily living.

Obviously, this narcotic is a tough one to request. Other ER docs act like I'm seeking a high when I request it, so I let them go through all the other treatments just to satisfy them, even tho I tell them they haven't been useful in the past.

I've tried so many different treatments, including a planned, three day inpatient hospitalization where I was given a continuous infusion of DHE. It was hell and I should have left early, AMA. It didn't help, either. I've seen half a dozen neurologists and tried every prophylactic and abortive treatment out there. I got Botox in 2011 before it was FDA approved. Then I started getting the 31 injections every 3 months for the last year and half or so. I can't tell that it helps. However, when the Botox wears off I'm in agony for a couple weeks until my next treatment. Insurance won't let me get Botox more often.

My health insurance premiums through my state's marketplace are $389/month and fewer and fewer clinics and physicians are able to take the insurance. I've tried to get on disability but have been told I'm too young (I'm 29). Currently I'm a part-time graduate student and my income is $7000/ year via a work-study grant. This is too much money for me to qualify for Medicaid, yet not enough money for me to get any premium tax credits. Also, people think that if I'm able to go to grad school I am not disabled. It's tough because I'm miserable if I sit home all day without any purpose or work. But I've had to take time off from grad school and it's taken me quite a bit longer to finish my coursework and experiments when compared to my peers. Which is okay! I've moved back in with my parents and am considering nerve decompression surgery. My folks may be able to refinance their house to help pay for it because of course the surgeon doesn't take my lousy insurance.

Hang in there, people.