"You have chosen not to be admitted; therefore you should resume your outpatient medications. Good luck with your migraine and merry christmas."

I didn't have the energy to be angry. This was the third ER visit well within a week, and no one seemed willing to do what usually works for me--giving me 8-10mg of IV dilaudid in reasonably short order (less than an hour) and sending me home to sleep. They spaced the dilaudid out, or wouldn't give that much, or just something.

So a 9 headache would go down to a 7, I'd go home, go to sleep, and wake up with an 8.

I didn't want to spend all of Christmas eve in the ER, but I was trying to avoid going back to work on Boxing Day looking like the recently dead.

So much for that plan. They offered to admit me and give me 2mg every 8 hours. And then they treated it like a bargaining table. And brought DHE infusions up again, despite them never having worked. I don't get it.

I have no idea what to do next. I've sent an email to my GP (out of office until the 3rd) asking for a referral outside of UCLA, to Cedars-Sinai, and left a voice message with my migraine specialist asking him why all the ER stuff went down how it did--he was paged for two of the visits, after all.

If the meds I used to get will kill me, someone needs to tell me. If this level of pain is something I'm supposed to keep functioning with, someone needs to look me in the eyes and say that to me.

In which reprieve, however temporary, is well-received

Went to the ER last night. Yes, you're counting right--I just got out of the selfsame hospital on Sunday. But Tuesday and Wednesday mornings I had woken up with a wicked headache--woken up by the pain. That's extremely rare for me. All told, I think I had less than two hours awake over the 36 hours in which the pain was less than a 5 out of 10.

So much is variable. The dilaudid hit me like a ton of bricks this time, but they didn't put me on physiological monitoring.

My migraine specialist said I shouldn't let the headaches blossom as long as the last time, but he also proved to be unreachable all day, so in order to nip the pain...well, it was way past budding time...I went to the ER. His plan was to avoid the ER with more DHE, but I don't think it works.

What they see as progress is me lying down. That always helps. But I can't live in my bed. Just this Sunday after 36 hours of DHE flushing I went home--and had my next migraine maybe 5 hours later. Not success in my book--I can probably achieve that by staying in bed all weekend without the needles.

Get to us earlier!

Easy for you to say, Mr. Migraine Specialist Man. When I go to the ER after four days of the same migraine, I feel like I'm folding early. That's what I did this past Friday, but instead of decreasing in intensity (either much or little) it decreased and then spiked.

Which meant they transferred me from that ER to a hospital where the specialist has admitting privileges and I got the DHE flush again. Tiresome, boring, cold, hot, just...not a fun way to spend your weekend.

Does it work? Hard to say. Lying down for two days has its own minimising effect on my migraines. I was discharged at about noon, and got my next migraine by six. But it was small and mostly responded to Maxalt.

Mostly.

The upshot of the visit:
a) He wants me to ping him (how? he's so very unavailable) before the ER to see if we can do the DHE as outpatient before dilaudid, etc come into the picture
b) Namenda again
c) Increase Depakote to 1750mg/day

We shall see. My fingers are crossed Namenda-wise, and I'm back on the Mg and the riboflavin, just to see how things go.

Syncope is not uncommon with migraines

Oh, yay?

It means paying much more attention to how I get up. I can't even begin to think about how it will affect my desired physical activity. I just can't.

I don't know how much changed as a result of today's visit with the migraine specialist.

My Depakote is to increase, and he wants me to take Celebrex with my triptans, right away, and see if that makes a difference. He's considering a second admission, this time with more DHE, and aggressive Namenda right afterwards.

Oh, and more steroids.

The most palpable (for non-literal interpretations of the word) change is his insistence that ER doctors page him if they disagree with his protocol, certainly before trying to argue with me. Much appreciated, let me tell you. He knows I have to be given all the meds together, up front, instead of trying a bit and trying another bit and ending up giving me more in the end.

Let's just hope his communication skills are good.

Follow up in three months.

The hospital was...miserable is too dramatic, but I certainly feel my weekend was stolen...bleak.

My roomie spent much of her time moaning in pain after an angiogram to work out why she'd had a stroke after some sort of shunt.

Some guy kept wailing "Help! Call the paramedics!" Every outburst of his was followed by an annoyed nurse explaining to him that he was already in the hospital and that the paramedics couldn't help him.

I think they ended up tying him to the bed--I know I heard a few crashes that sounded like him hitting the floor.

They weren't trying to heal me this past weekend so much as they were experimenting on a new treatment and its efficacy. I did not pay attention to that distinction, and had been hoping that they would be all about the total migraine relief.

I have had many panic attacks about hospitalisation--I'm not sure having actually gone in will prevent the next one.

It feels a bit less dire once you've had a chance to pee

::sigh::

Ill-omened from the start, but nowhere near as cold as I had worried.

Let me explain--no, too long. Let me sum up.

I spent the weekend being given doses of DHE and hopefully nothing else to see how my migraines and vital stats were affected (I was hooked up to nifty machines with alarms and an automatic blood pressure reader).

Couple issues:

Freaking loud, and intermittently smelly with chemicals--bode badly for migraines

Lying down for 48 hours is in no way useful modelling of my life, even a bad migraine weekend

You can't make the migraine go very far if you don't tend to the shoulder pain

I was an experiment. I understand that. They are studying DHE's efficacy on me, and lack of me-killingness. Much appreciated. However, this means they weren't tending to my pain--that would mess up the stats.

I did manage to get 1mg of Dilaudid (what I really wanted and thought I'd surely get were trigger point injections, but, no--opiates over local anesthesia) to bring down the shoulder and neck screaming, but the nurse tried continually to talk me out of treating it. "If you can bear it," he'd say, "then don't take anything."

"I can bear anything," I snarled. "I just don't want to. I don't want to end up in the ER because you've let two days of this pain go untreated."

Even then, after what seemed like conceding, he didn't administer it to me until I asked again, a full hour later than he said he would.

Now, it could have been a pharmacy thing. It took me four hours to get admitted because they hadn't been expecting me and the neuros were on rounds with people with actual problems (I'd call my roommate a whiner, but only in the sense that I'd probably whine if I had had multiple strokes in my early 30s). Then it took another four hours to get my first shot of anything.

On the up side, I got to meet a lady from Belize.

On the down side I was never formally discharged because I got fed up waiting for the wheelchair and left--my escort got a $45 ticket for not leaving me until I was admitted, and I really didn't want to inconvenience him any more. I'm paying or challenging the ticket, but still.

Money point: My head hurts right now, but at least I can take meds for it.

Next steps: Gonna make an appointment with my PCP for trigger point injections. Migraine guru can get back to me when he has his epiphany.

Ugh. Hospitals.

As things stand, I'll be admitted for the DHE infusion tomorrow morning. I am both impatient and reluctant.

Part of me had hoped that this would be a big guns cure, but it seems it's something that is administered repeatedly if the first infusion proves effective.

Well, at least it's not botox, which should have gone in my alternative treatments entry.

Not reluctant enough to not do it, but...hospital. Cold, no personal space, no internet, no cell phone, no TV, no computer? Oy. I have books, I guess, and a brain. Maybe I'll poke through my yarns and see if I have enough for a crochet project.

This is a far cry from my initial reactions to the idea of hospitalisation, with 100% less freaking out. So it's an improvement.

The infusion will be doses every eight hours. From a wee bit of surfing they list anxiety as a possible side effect, and since I get that off of everything...well, I don't want to be a doomsayer, but I won't be surprised if it happens to me.

Now, if they could just render me unconscious for 48 hours, that'd be great.

I wasn't thinking clearly when I asked to be admitted on Saturday--that means I won't be released until Monday morning. I should mention to the boss that I'll be a little late.

A tale of two ERs

When I have a migraine crisis, I have a practical choice of two emergency departments. Century City Doctors' Hospital is a nearby boutique-style hospital that has short waiting times. UCLA Westwood is also nearby, and has many more doctors at its disposal, but everyone and their wounded aunt goes there--the wait time is markedly proportional to the severity of your issue, and really, how much does a headache count? All of my inside bits are still on the inside, and the outside bits both attached and outside.

However, my ongoing care is from doctors in the UCLA Medical Centre network. It'd be silly to live where I do and go anywhere else for neuro, GP, pain management, etc.

I don't care about them during a crisis (defined as a headache that's going to mess with my ability to go into work the next day--so I don't have Friday or Saturday crises, and I rarely have crises before 7 or so--those are just really painful headaches). I just care about making the pain get gone.

So I end up at Century City more often than not.

I have to say--some of the care I've received there is excellent. Nurse P is amazing. He's probably taken the most detailed medical history of my headaches any medical professional has tried to get. He cares, and he remembers. The last time I was in there, he spotted me in triage and came out to hold my hand and look sadly at me as I snivelled.

I don't worry about feeling like a drugseeker around him, or around a couple of the other doctors that have seen me before.

However, the single worst migraine-related ER visit was also to Century City, and my ER escort will probably visit his wrath on Dr K, should their paths meet again.

CC won't tell you who's on duty. I've tried calling to ask. Perhaps next time I'll call to ask for Dr. K and see what happens.

The level of care at UCLA Westwood isn't bad, don't get me wrong. I just hate hospitals, and it's hospitallier than most, and I've fallen through the cracks there and ended up spending extra hours just waiting. Given my propensity for anxiety attacks from the various meds, well, that's pretty unpleasant before you get to the part where I'm asking a friend to sit with me and wait too.

But I'm picking up the level of my ongoing care, and the migraine guru wants me admitted for a DHE infusion, and that'll be at UCLA. Also, at UCLA they didn't think I'd been doing that badly, since my visits there were sparse.

Yeah.

That.

My hope is to be admitted this weekend, to UCLA, and maybe we'll call that starting from scratch. Get 48 hours of DHE and see what happens.

I'm currently at 10 days between crises, and that's so not on.