Not a moment too soon

Finally. An ER visit that worked. Partly coincidental, but I ended up with doctors who trusted my word. I don't know what's up with the documentation, but suddenly UCLA hasn't been able to find the note on my file that tells them about my dosages. At the best of times I hear a hushed "Six milligrams of dilaudid? I've never given anyone that much IV at one time." from the nurse's station. This visit was the fourth since my sister came into town--just over a week. The previous visits involved too little meds, or spaced too far apart.

This time, the second doctor (it was a risk going in when I knew there was an upcoming shift change, but I couldn't wait much longer) cut me off. Didn't care about my history. Wanted to know what I thought would work for me, and that's what he gave me. Pure and simple.

That was yesterday. Today I've had twinges of a headache, but nothing serious. Acupuncture this morning, and a massage scheduled for noon tomorrow. This is so much better than it was two days ago.

"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.

[365days01]

 

Not a standard post by any means, and I'm a couple hospital/doctor's visits behind in my documentation. But in another internet life I just started a portrait-a-day project to try and jump start me back into photography.

Day 1? Migraine.

More photos as they apply.

But before that

There's a hospital entry that needs to be made, but I don't yet have the energy. Instead, an article that popped up in my RSS feeds, about migraines from the strangest source:

Migraines That Erase Color. It's not so much about that, but interestingly enough has a number of palettes following it that people submitted as migraine related.

Want to know how I hurt? Like this:



Want to know how to give me a migraine? This way:



And this is all too familiar:

Close Encounters of the IM Kind

No, not instant messaging. Intra-muscular. Last night's nurse (with whom I've totally bonded) decided to stop digging around in my arm (now that I've started watching intently, yeah--that's what they're doing. If she has to pull the needle all the way out, she has to pop open a new one for the next stick. So she tries wiggling it about as much as possible which is why my forearm looks like one big bruise) and ask if I could have the meds IM instead of IV.

Turns out toradol cannot be mixed with the other drugs because it crystallises. She gave me a toradol shot to the shoulder.

DAMN.

That was painful.

The rest of the drugs went into the glute. Biggest shot the nurse said she'd ever given someone all at once. I love to be a nurse's first time...not.

Communicating with my GP it seems that IM is not desirable. It certainly comes on slower, and that doesn't bode well. So I guess it's back to the old snipe hunt for my veins. I feel like such the delicate flower.

Shots worked, though. I'm feeling much improved over this time yesterday. So even if it wasn't optimal, it was still effective.

Now my specialist just has to get back to me with the referral he mentioned.

Check

We can cross Migranal off the list. Tried it three times, it failed me three times.

Not sure what else is next.

Better than nothing, I suppose

My specialist's coordinator got back to me--that's how we communicate, via a third party--either his coordinator or my GP.

The previous third party, my neurologist, washed her hands of me some months ago. No more ideas, she said. I'm afraid my GP is about there himself.

As is the specialist--he's referring me to someone else. Don't know who. Don't really care. I'll go. The last motive I had was to try Cedar Sinai, but they have to have tried everything at UCLA first.

It's not taking as long as I thought it might.

There might be an oral dilaudid prescription waiting for me with my GP. The migranal script will be filled tomorrow.

Why are you looking at me?

My GP is at his wits' ends, and my specialist isn't returning my calls.

So where does that leave me? Other than with a migraine that's weathered four trips to the ER, I mean.

Sansert: my specialist told me I'd have to get it in Canada because the company didn't find it profitable to distribute in the US. It's an ergot prophylactic. My GP says it's not for sale in the US because of side effects. Oops.

Propofol: this is an abortive, a really big gun. It's a general anesthetic. Looks sadly appealing to me right now. But it's not something I can swan into the ER and get.

Migranal: something my GP mentioned in passing. Don't know much about it.

Nasal lidocaine: injecting lidocaine up my nose. Sure. Why not?

Botox: maybe the second time will be the charm.

Craniosacral massage: I have two hookups for this. I should use at least one.

And a friend's father suggested that someone with cranial-facial anatomy knowledge - like a maxillo-facial surgeon would need to inject 1 - 2 cc's of PURE drinking ethyl alcohol into each (one on the left, one on the right) of your Gassarian ganglions. One access is through the posterior palatine foramen (in your mouth).

I can't believe I have to have ideas.

Dear Patient

This is tough. I have discussed options with Dr. [Specialist] and we are running out of options.

What would you like to try next?

???

Me? My ideas? I'd like to try being cured, or maybe having my symptoms managed so I can go back to having a life. That should be pretty easy to guess.

I'm not supposed to be the one doing the heavy lifting here. That's what the highly paid professionals are for.

Narrow Escape

Oh, I so won't be detailing all the headache nuances here. Not a pretty sight. My phone has a recorder function. I'll buy some extra memory and use that.

31/10/07

I have to admit I don't remember the details of the headaches I've had so far today. Keeping a diary of pain has always been hard for me. I'm easily distracted.

No time like the present, though.

It's almost 5pm, and I'm feeling pain across the sinuses and through the right side of my head. I haven't experienced notable auras, and am mildly nauseated. If we could the pain that sent me to the ER yesterday as a 9, this is a 5. I do want to go home and sleep it off.

I have taken nothing for it today, it being a post-ER day.

I've called the nice lady about the study I mentioned earlier. Got no feedback from my specialist about whether or not it's a good idea, but the coordinator knows my specialist (the researcher is his boss) so hopefully that will all get clarified.

There's compatibility to be determined. Something about a grade 5. That may refer to the size of the hole--I don't think mine was big, all things considered. I just googled pfo grade and my head exploded. You have been warned. Anyway, none of those links mention a grade 5 that I saw, so I don't know what that means.

She's advised me to keep a headache diary, since they'll need 30 days of diary before they get started. This is as good a place as any.

Hole-shaped heart

Got an interesting call today. Turns out my local version of the PFO/migraine study wants to have a word with me.

In short, there's a wee hole in a fetal heart that allows blood to short-circuit the lungs (hey, who needs them?) that's to close when you're out and about in the big bad world. Often, in migraineurs, it hasn't closed up. Scuba divers are put at an increased risk of the bends by having this hole, and migraineur divers who had the defect corrected also noted a break in their pain.

But it's all unofficial, and they need to do more testing. I have the hole. My previous migraine specialist didn't want me to do it because she thought there were side effects that mitigated it.

I've left a message with the new guy. The doctor running the study is a coworker of his.

We shall see.

Main course or side dish

The particular feeling of nastiness I'm having right now feels familiar. Feels familiar in a third week of Namenda sort of a way.

I haven't read up on the side effects of this anti-Alzheimer drugs, but I'm nervous it's what's responsible for this 24/7 migraine with not so much pain. Sure, you might think that the pain going would be a good thing. And it is! It's just that the nausea, sensitivity to light, sound, motion, cognitive impairedness--they're still all here. The things that migraines took off the table are still off the table. And I can't even go to the ER to get them back for a little.

I expressed this concern to my migraine specialist as best I could (I have to go through a middle person to talk to him), and he's told me not to stop taking the Namenda, but instead to do week 2 again of the tapering starter pack. I'm on week 3 now, 15mg of the stuff, and really just not happy. I could sleep forever with the slightest provocation.

Hopefully that makes the difference--I'm not sure how he intends to get me past 10mg, and I'm not sure this is better than this time last week.

October Resolution

I've tried from time to time to apply Zen philosophy to my life as a means of achieving calm especially in the face of chronic pain.

Mindfulness, the idea of being in the moment as opposed to concentrating on one thing to the exclusion of all else-denying the migraine an opportunity to bog me down by expanding my mind beyond just those physical sensations, is my goal.

Or would be. To be honest I've done very little. Some, perhaps, during biofeedback training, and my escort exhorts me to think of lounging on a beach, or to practice biofeedback, or just to plain put my shoulders down when he sees me getting worked up over anything.

I don't think I have a baseline of stress that's any worse than anyone else's--especially when you take migraines out of the vicious loop. But added stress can push me over--that vague premigrainey feeling can become the real deal with a one paragraph email or a voice message measured in scant seconds.

I've breathed my way through other pains before, tried to open myself up and just flow with breath, using breathing as my markers, not feeling. But migraines come with so much other package--thinking or feeling my way out of sluggishness and nausea is considerably more complicated.

For the simple ones, with sinus involved (by simple I mean tightly focussed pain--these are like hot knitting needles being slid up my nose) and little else, I can take my mind off for a while. But many of the rest are more complex, and require more (or less?) work.

One general thing, something that doesn't have to wait for the onset of the next bout, is to inhabit the present more clearly. If I can pull my attention away from how long I've had the current headache, how little respite I've had recently and not be throwing out contingencies for the next ER visit or the next abortive drug, maybe I can lighten the load on my shoulders some, and leave myself with less to ignore the next time.

Well, that's the plan, at least.

I'm looking forward to the weekend, during which I won't tempt fate, I promise.

Since Wednesday's ER visit, I haven't had that much pain. I'm having a sinus migraine right now, which is actually pretty intense, but it doesn't have the same grinding down effect as the more traditional one.

I've taken triptans at the onset--and the onset has been slow enough I've been able to catch it--and they seem to be doing their job.

That's huge. I've had two days of almost being like a normal person, although I am skittish around loud music and other potential triggers.

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.

Ah, where to start? A week of multiple ERs, and not a little stress.

This particular migraine started on Thursday. Since I get about a migraine a day it might seem strange that I call some continuous and others stop and start anew. Basically, it's about the characteristic of the painful parts--are they consistent with the previous painful parts--and the characteristics of the less painful parts--are they pain free, or merely pain-lite?

Monday I tried to go to the ER. I tried to go to two ERs, but neither of them would give me much in the way of painkillers nor the other stuff in my recommended cocktail. The first ER gave me 1mg dilaudid intra-muscularly, and 25mg of Benadryl. Seems he only wanted to give me two things, and once I told him that dilaudid made me itch he took the anti-emetic off the bargaining table and replaced it with the anti-histamine.

Effect on my migraine? Sweet FA.

The second ER--well, there's a theory that I shouldn't have told them it was my second ER. But I hold onto the conviction that if I tell them everything they'll be able to treat me more knowledgeably.

Maybe not these guys. Absolutely no way they could give me more than 1mg of dilaudid. I'd never be given SIX. I told him to check my records from the last visit, but he said they didn't write things like that down.

Eventually he got through to my GP and my migraine specialist, and was willing to go as high as 2mg.

Effect on my migraine? I lied and went home.

By Wednesday I couldn't go into work. Thursday I got a last-minute appointment with my GP who called the migraine guru and not just had the explicit protocol put in my files for two hospitals, but also called one of the ERs and told them to expect me.

Push comes to shove, going to the ER alone is horrible, but I didn't have much alternative. It took them some while to bring me in, and the doctor who saw me seemed flabbergasted at the dosage, and even more flabbergasted that I've had up to 10mg in one visit. They hooked me up to all sorts of monitors, gave me the cocktail of medications, and lo! It was like unto a beam down from the heavens.

I got my brain back. Oh, a loopy brain until the dilaudid wore off, but a clear one. Ugh. Way too much work and took way too much time.

It's funny--when I go with my normal escort, I tend to get enough medication. When I don't, it becomes a crapshoot. I wonder if he'd be flattered to hear that?

Enquiring Minds...

I have a Google News alert set up for "migraine" (I used to also have one for "Whedon", but I soon learnt there's neither enough time nor enough interest to read those every day). There's not that much new, all told. Lots of regional "migraines are very bad--you don't realise that" stories. Which is true. I mean, I've been having them since I was in the single digits, but it's only in the last 5-10 years that I found out there migraine specific abortives, never mind prophylactics.

And the ER thing? Within the last year. How I wish I could un-know that. Not even sure why.

Tonight's Google Alert led me to The Migraine Action Association, a UK-based group. I'm poking around idly, and I notice their membership page. Pay? To be part of a migraine group? I pay upwards of $100/month on meds, $75/ER visit, $250/admission. I can't imagine paying more money voluntarily.

And I'd like to think the things they learn are disseminated outside their borders.

I don't know. It seems like buying more migraines--their graphics, for instance, do a damned good job of evoking the headache I'm already having. The better they are, the worse I feel.

I didn't end up stopping the magnesium--the upset stomachs are less constant, perhaps because I'm making sure not just to eat when taking it, but increasing the yoghurt in my diet as suggested by random websites.

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.

Third's the charm

I waited at UCLA Westwood for hours, and it never felt like I was getting closer to the front of the line. Understandably they had higher priority patients. Much of the ER staff vanished up to the helipads to bring in trauma patients.

So we went to Century City Doctor's Hospital. I checked at it was Dr. Asshole on duty, so we picked up and headed for UCLA Santa Monica. New ER, twice the number of beds of the old ER.

Got through triage in a snap, and got attention fairly quickly. But they started me off with morphine, which didn't hit the headache that well. By the time all was said and done I had 8+mg of dilaudid, two doses of Benadryl, one of Toradol, and an anti-emetic whose name I didn't catch.

Broke the migraine too, nice and solidly. It's over 24 hours since I decided I had to go in, and I'm only having a slight headache right now.

I have to give their ER the thumbs up. Clean, and all the staff was very nice and attentive--a screaming baby was put next to me and they moved me as soon as they noticed.

The completist in me feels I should have tried St John's Hospital, but the rest of me is quite okay with not knowing everything about every hospital within a few miles of my home.

Google backs me up on it. Magnesium is making my stomach miserable. I emailed my GP about it--even though I was taking it with food and topping it off with yoghurt I was ending up with an aching stomach and a feeling of fullness that lasted hours.

He suggested I lower the dose, but I can't do that with these pills, or stop altogether.

I'm thinking I'll stop because I wasn't noticing any positive changes to the migraines anyway.

That was the week that was

And I'm focussing hard on the past tense of that title.

Monday I go to my GP, fill out my prescriptions, and come home instead of my normal sociable Monday evening.

Tuesday I leave work before 11am because I need to come home and lie down--the pain is bad enough that I'm having difficulty keeping my eyes open. Some time and two Percocet later I grab a ride to the ER. I like to try and hold out, but this puppy isn't going anywhere and I can't do anything.

Push comes to shove, I have a could-be-worse ER visit with an asshole doctor, which requires me to sneak out the back door. The pain was startlingly bad, but I need to get home for a number of reasons, even before you get to my typical anxiety attack.

Wednesday is not great. Wednesday is the sort of day that would send me to the ER. Except so was Tuesday. I bite down and pretend to be useful and don't seek medical attention. I do get to test the injectable Imitrex, which worked for at least a while. I inform my GP who suggests sticking with injectable, and perhaps stronger narcotics.

Thursday kicks my ass. No point going in to work. I make the decision to lie back down and sleep till almost noon. I end up taking too many painkillers for my liver's health, but we're both still here so it worked out.

But that was a lot of pain. Each of those three days would have recalibrated my 1-10 pain scale all by their lonesome. Together? We're talking post-concussive-syndrome level of pain.

Not sure what I did to provoke that.

But today is Friday. The pain was bad, but not staggeringly so. In fact, the first headache didn't come on until about an hour after I woke up, which is just like a vacation.

And tomorrow is Saturday: my acupuncturist is back in town. I'm hoping he can break the cycle that the ER failed to. Otherwise I'm shackled all too tightly.

It's never a good sign when your doctor uses the phrase "uncharted territory."

Ah, well. He was talking about the supplements.

I've been on the riboflavin like clockwork, and have fallen behind on the Mg. I'm taking recourse in the internet to find both, since the dosages seem a bit extreme for the stores I've been in these past two months.

As may be evident, no big change. Hopefully the Mg will come in soon. This hurts.

Monthly GP Status Report

Well, I haven't noticed much clear difference in headaches since the last visit, and told him so. Perhaps some mood improvement, but it's hard to tell (sadly I feel I may have developed PMS at my advanced age, but...as noted: hard to tell).

He's given me boxes of Namenda (anti-Alzheimer's meds which some people find drastically effective as a prophylactic) in case my September 5th appointment with the migraine specialist involves putting me back on. He's also upped my Depakote to 500mg 2x a day, and Celexa to 20mg 1x a day.

The exciting bit, though, is injectable Imitrex.

Okay, not that exciting. And I know I'm going to have a bitch of a time deciding which headache warrants it. But I want to know if it makes a difference, since the last big idea (Frova) didn't at all. It may be a little while before I find out, though. GP suspects that insurance won't approve it right away.

I finished off my Percocet prescription right on time, so that's re-upped for the same amount. I am, however, going to shift how I take it, hopefully to result in taking less.

Basically, I intend to give up more. Instead of trying to muddle through at home I'm going to give up and go to bed more often.

I'm not sure how much "more often" is left, but I'm stopping teaching or pretending to train on Mondays, so that's a start.

About last week

Monday's migraine stayed all day, and worsened towards the evening. I couldn't see any way of making it disappear with what I had to hand, so ER it was.

In many ways the visit was crazy and confusing, but I'd say the most basic problem was that when I woke up there around 3 in the morning, still in pain, I wasn't able to get more pain medication for two or three hours. Report is that I metabolise this stuff very quickly, so the more space inbetween doses, the less efficaceous it is.

I'm not going to harsh on the ER in question for that delay--there had been a fight involving staff and a patient, and my nurse needed medical attention himself. It was just unfortunate all round.

At about 7 they asked the fish-or-cut-bait question, and I decided to fish, to get admitted so they could administer more pain medication and monitor my vitals.

Oy.

Each ER visit costs me $75. Not inconsiderable. Any given admission means the ER cost is waived, but then it'll cost $250.

For a long time Tuesday morning I regarded my breakfast as the most expensive ever, because no one came to see me.

They sent in nurses, to take readings. I complained to them that if I wasn't going to get medication, they should just let me go home.

They sent in a psychiatrist, because they saw anti-depressants on my chart. We chatted, and I finished by telling him that I didn't currently have a drug or alcohol problem, but was considering developing one since I couldn't get painkillers.

That brought Patient Relations in, and my answer to "What can we do for you?" was still the same "Get me a doctor, or get me discharged."

Eventually a doctor came in, examined me, and decided they'd do PCA (Patient Controlled Analgesia). Except he wouldn't write the orders, the pain specialist was.

Great. Another wait. Pretty sure they didn't get going until the afternoon. If not for the free internet access, I would probably have just started walking home. Not only could I take better-than-nothing painkillers there, the food was palatable. This hospital said they served Wolfgang Puck food, but it was pretty disgusting.

For PCA they give a breakthrough dose of 4mg of Dilaudid (I'd had 6 the previous night in the ER), and then the patient is allowed to administer 1mg at a time, no more often than once every fifteen minutes.

Should there be a big gap in there, they start again with the breakthough.

Needless to say, I had a big gap--the IV slipped out of place and blood and saline were being squirted everywhere. Took me forever to get a nurse in (don't have anything happen around shift change), and he made it sound like I'd purposefully removed the needle.

Yeah, sure. That makes sense.

Also during my stay I had a neurologist come in and suggest changing my anti-depressant medication and dosage. He was also very negative about the idea of me actually using the PCA. Unfortunately I'm hella suggestible that way, and did back off it until the pain guy came in again and made me feel silly.

I ended up leaving Wednesday afternoon, still in pain, but a little less. In fact, I felt pretty good until getting out of the car, at which point everything crashed in on me. Taken upstairs, put to bed, waking up a few more times in a lot of pain, but it ended up ebbing to about a 5 by the time I went to sleep.

Hmmpf. Having been admitted to both UCLA Westwood and Century City Doctor's Hospital I really REALLY really don't want to be admitted again.

But mostly I don't want to feel like hospital is the only reasonable option, ER or no.

4.5 is good

Unless you're talking Richter.

But I'd have settled for 4.5 on the pain scale as a good time to leave the hospital. Instead, I just left when my ride arrived.

I need to do some research before I can spell it out here properly--it was my first exposure to Patient Controlled Analgesia, and on top of that I had an internet connection pretty much the whole time. I just have to find those pieces and put them together in one coherent piece.

...in the morning.

In combination with my migraines, I have a fair amount of neck and left shoulder pain. I've tried to address this in a number of ways--stretching, physical therapy, massage, icing, lidocaine patches, acupuncture, and trigger point injections.

It's hard to say what works, but I gravitate towards the trigger point injections when I can--they seem to work best, longest, and naturally are the hardest to obtain.

What happens, when the shoulder tightens up, is that pain bounces up to my head and triggers migraines. The theory that my pain management guy was working on was one of a feedback loop--migraine causes shoulder pain causes migraines. So if they're both bad breaking one isn't much help. They need to both be broken.

I tried, at length, to explain this to the staff when I was hospitalised. My shoulder was over 8 on the pain scale, but they didn't want to do anything to it in case they messed with the results of the DHE experiment. Weirdly enough, they gave me dilaudid, which I'd think was more intrusive.

Still, I'm not the professional, so what do I know? As soon as I got out I made an appointment with my GP for the trigger point injections, which he provided without comment. One of the ER doctors at Century City is always open to providing them too. But even my pain management guy, the one who first gave them to me, won't do them anymore.

It's a damned shame, because they don't mess with my head, give me anxiety attacks, and they last a good long time.

Some days it's just as simple as "Ow. That hurts."

Today is one of those days.

It's also a day on which I'm glad I have a doctor that will give me useful amounts of rescue medication, because I could be spending the night in the ER worrying about side effects and aftereffects and imposing on people.

But I'm not.

Instead I'm home, waiting patiently for the Percocet to kick in, and being glad that if I have to be in pain it can be in the warmth and quiet of my own apartment.

Which counts for a lot.

I may just have to go fall asleep in front of a TV whose volume is too low. Because I can do that. Well, I could also do that at the Santa Monica UCLA hospital, but I do like my privacy.

Teeter totter

I mentioned the link between migraines and depression earlier.

The very first sensation I could point to and call depression (as opposed to unhappiness) came with a certain sort of migraine. I don't get them anymore, I now realise, but they'd start with my mouth. My front teeth would all ache, and I'd get sad and scared.

Having my neurologist point out this heretofore-unknown-to-me side effect of migraines was a real eye opener, and it was definitely strange to have it tied to such a particular migraine configuration.

As noted, I don't get that same migraine very often. But there's another one, one with a lot of strange sensation in the back of my head, that has a lot of neck pain and discomfort and makes my spine feel weak, that comes with a great deal of hopelessness. I know it when I feel it--I just wish that knowledge trumped sensation more consistently.

The migraine I had for most of today wasn't that one (I only had that one in the morning). It was one that angers me, and makes me hate the world a great deal. So, no, I don't know how I'd normally have reacted to people today. As it was, a great deal of tongue-biting was required to make it through.

I cannot bear the loss in perspective, even when I know it's happening. That's not me. That's some other mercurical and temperamental woman. I am supposed to be in control of that.

It's bad enough having chronic pain. Becoming another person is salt in a gaping wound.

I laugh to myself and call it a midlife crisis. I call some particular friends and have them talk me down. Sometimes, rarely, I grab a hand and weep like a child.

It's good to have the space to let people help me--I'm tremendously grateful and lucky for it.

I just want my spine back. My resolve, and my constitution.

Back on the topic of "is it a thing, or is it a side effect?"

I lapsed off of my Mg and B2 in hospital mainly because they couldn't find me Mg, and took a while to find me B2. Took me a few days to get back into the rhythm of things, and in a few days I was back having orthostatic hypotension--though nowhere as badly as a week or two before the hospitalisation.

Wondering about those things is such a drag. I've had a hard time finding B2 especially in the dosages he recommended--I'm way past the RDA (1.2mg) at 400mg daily. From what I can tell I'll just pee out the excess, but I'm reading now that I should be ingesting as much B6 as B2, and that's patently not happening.

My Mg intake is not too far off the normal supplement amounts, so who knows. Probably just coincidence. So many drugs and supplements are using my body as a battleground that I can't tell collateral damage from a random coincidence.

My basic goal is to meet my obligations. That means I have to work, since I've made a commitment to my employers, and that's how the bills get paid. That means I have to teach krav, because I've said I would.

Everything else is optional. I medicate with the day job in mind, and tear myself up inside when I can't teach when I'm supposed to.

Right now I'm having a bad headache--I'd rate it at about an 8. On a Sunday night, especially if this sort (these don't respond well to triptans), I'd be wondering about the ER.

I wonder if that makes me weak. Time has either given me worse headaches or worse tolerance, because I go way too often.

But I'd rather spend $75 dollars than miss a day of work. But I hate the feeling of the drugs, the after effect of the drugs, the favours I have to ask, the vulnerability I have to display, and not only am I becoming friends with one of the Century City nurses, so is my escort.

But it's not a school night, and I have acupuncture tomorrow morning which will probably kick this puppy, at least for a few hours. Long enough for me to teach, I hope, and I'll keep my fingers crossed that I don't have to go in to work. Please, project, please finish before 1 and let me get my rest.

I had been making dinner plans for tomorrow, and there is a party I'd like to attend, but maybe dinner can be lunch instead, or postponed, and my simplest ride to the party isn't going, and I should get the rest anyway, since the past two weekends have been pretty much shot one way or another.

That's what it is for me...juggling the optional stuff as best I can. At some point, sleep seems to have made it onto the optional list. Not sure how that happened.

Recomendations include:

Magnesium supplementation between 300 and 500 mg p. o. q. day; riboflavin supplementation 400 mg p.o. q. day.

A memantine starter pack was given to her. She may continue with her amitriptyline, but in light of the lack of efficacy of both the Wellbutrin and the gabapentin, she should discontinue those.

I would strongly have you consider arranging for dihydroergotamine or Depacon infusion to help "jump-start" the process. I am available to help you arrange this if necessary.

Consider frovatriptan as an abortive agent in light of its longer half-life and its potential for use as a transitional preventative agent. Amerge has been tried by her primary care physician Dr. Singh. A Medrol dose pack may be helpful in
breaking a run of headache.

As a rescue regimen for the emergency department, I suggest a combination of IM/IV medications inclusive of Ketoralac usually 30 to 60 mg, followed along with 25 mg of diphenhydramine, with 25 mg IV Phenergan, and with or without a bolus of Solu-Medrol of 250 mg IV. If that combination is not helpful, modification could be include sumatriptan subcutaneous injection along with an antiemetic and antihistamine.

Interestingly enough, I swear this isn't what he told me--I have no idea what Ketoralac is. I thought my ED recommendation was for anti-inflammatory, anti-histamine, anti-emetic, and subcutaneous imitrex.

This is so tiresome.

Oh, that stings

From the Migraine Guru:

I saw (LA MIGRAINEUSE) as a consult for (NEURO) end of May/beginning of
June. I made several recommendations at that time. I am not certaint
that all those things have been tried. I also offered (LA MIGRAINEUSE)
admission to CHS 2 weeks ago (one of my recommendations from the
initial visit) but she declined due to work issues. She was admitted
over a weekend and did have moderate benefit from the D.H.E. She may
need successive treatments considering the duration of her daily
headache (one round/month). If you have access to infusion services in
the 100 building, she would not need admission since she has undergone
a course without difficulty. I had recommended Namenda but it appears
she is not taking that medication. I am not her primary neurologist
and she should continue to see (NEURO) with input from me.

Oh, I'm pissed. I did everything he suggested--why is he acting like I haven't? And the moderate benefit didn't happen!

I'm steamed. Just pissed.

Things my body tells me fall into two camps. Migraine-related, or medication-related. I barely entertain the thought that I can just have a stomach ache or a bad mood or a racing pulse.

I stop myself from going to look at side effect lists when I try a new medication. I don't need any help manifesting physical stupidity. When someone else has a spell of insomnia it's stress or a bad couple weeks. I'm convinced that it's because of a medication change, or a shift in my migraine pattern.

It's like I'm willing my body into total subservience--no straying from the topic allowed.

So I wonder--is this just a stomache? I mean, I did just add a new med this morning.

Meet the new regime(n)

So here are the major changes:

Rescue Meds: I have some. I am in what my Primary Care Physician called a Narcotic Contract. We agree on a certain ceiling of rescue meds a month, and I see him once a month to evaluate how it's going, and most importantly don't ask for more. I am also to be pursuing alternative means of lessening the migraines.

No problem! Can do!

Cedar Sinai Referral: Not as fruitful. I can't be referred outside of UCLA until they determine that they can't help me here. To that end...

Dropping the Neurologist: She'll be glad to hear this. My PCP is willing to run interference with the Migraine Guru for the time being. And he's going to talk to him ASAP.

Scuba diving: He's given me a sign off on it. Yay! It just remains to be seen how I feel.

Anti-depressants: Celexa has been added to my grab bag of meds to see if it can help with the mood. Not looking at therapy again right now.

Threepeat, trifecta, trinity

What is this threesome of threesomes, you ask?

Two doctors and a nurse that treat me like I'm in pain and want to be out of it.

Insomnia, migraines, and depression which tangle themselves together.

Rescue meds, trigger point injections, and anti-depressants.

And that is the short form of two days in my medical life.

Stating the obvious

Chronic pain is, you know, hard.

I've had the misfortune to be on the suffering end of one other bout of chronic pain. It was suggested then that I get therapy, aside from the physical kind, to help my state of mind.

Which was, in a nutshell, miserable.

My answer to that is "I know what will cure my mood--curing my knee."

Lo and behold, I was right. In fact, my knee was cured twice--once by finding the right meds, and once by getting me off said meds and 100% pain free.

Pretty simple.

I'm older now, and probably either more stupid or less. Thinking of my mood being repaired with my migraines isn't enough. It's not like I had any idea when anyone was going to fix my knee, and in all truth I had fewer friends around and was more physically incapable than I am now.

So why did tomorrow seem less grave back then? Of course chronic pain is depressing, and the knee put me in more pain and on more weighty painkillers for longer.

A Henry Ford study says that migraine sufferers are five times as likely as the general population to develop depression. They have no stats for people with nerve damage to their knees, but I'm going assume the migraineurs take that too.

I won't pretend to know crap about the chemistry involved, but serotonin comes up a lot. One of the angles for treatment of migraine involves anti-depressants (oddly co-incidentally, another angle involves anti-epileptics which put me on Neurontin for the second time--the first being for the aforementioned knee injury). So I've been on more of those than most people.

I used to joke that by any measure of meds I should be way happier than the normal person, but the irony began to wear a little thin.

Plainly stated, it's pain. It's pain that no one else can see, and no one else can properly explain. Treatment is scattershot at best, and so far pretty damned ineffective. If depression is, as I once read, an inability to imagine a different tomorrow, it gets hard to construct a migraine free day in your imagination after a week full of ones that pegged the metre at 7 or above.

I know that psychosomatics can also be a factor here, so I do try my best not to wallow or prognosticate negatively.

And sometimes it works...not necessarily to prevent a migraine, but you'd be surprised at how often they take me unawares. How inbetween them I feel like I must be a whiner, exaggerating.

Yeah. I only wish that delusion lasted longer. More than 24 hours would rock.

There's a middle ground somewhere, where I accept but don't wallow. It's a very good feeling, even though it's gravely realistic. But it's where I can plan, and plan reasonably. I don't reach for the moon, setting myself up for disappointment when I fail, and I don't fall in on myself and foretell my own doom to all and sundry.

That's what I aim for, and that's what I wanted to get out of therapy. All I need is a mental health professional with similar goals--or at least that's where I'd like to start, and why I'm so disappointed in my initial foray into the field.

I need good coping mechanisms. Short and long term. That's what I look for. Complete personality overhauls don't fit within my schedule. Time is short.

In the meanwhile, I just keep reminding myself that everything is temporary. Everything.

Here's how my medical care currently breaks down:

Primary care physician. His name may currently be on some of my older migraine meds, like the triptans. He referred me to my neurologist (see below). A couple months ago he rescued me from a crisis with a prescription for Percoset and some trigger point injections. But I don't normally consider him part of the migraine regimen.

Neurologist. Poor woman. I have flummoxed her. She tries, but she can't keep up. She referred me both to a pain specialist (see below) and a migraine guru (see everywhere). She tries to be helpful. Which includes a prescription for very few of a very low dose of Percoset, and an exhortation not to go the ER. So, not the most actual help.

Pain Management Guy. He's given me trigger point injections and done the occipital bilateral nerve blocks. He's also the prescriber of my Lidoderm, lidocaine patches that I apply on my neck or shoulder.

Migraine Guru. Now, he doesn't see patients, per se. He consults with a doctor that sees you more often. He's seen me once, made the protocol for the hospital visit, and the soonest I could get back in to see him is September--and I made that appointment over a month ago. He has half a day of clinic time a week.

Migraine "specialist." Hrrmph. I was sent to her during one of the long waits for Guru. She saw me for about a year and just kept piling on the drugs and the hugs and really wanted me to take more Botox. We've come to a parting of the ways.

I emailed my neuro today with the summation of the post-DHE so far (short form: Ouch, what next?) and asked for next steps.

Contact the guru, she says. Now, I have neither an email address nor a direct phone number. He's House-like, I guess. So I have to leave messages and enter into phone tag at work about the pain.

Ah, well. That's for next week.

Also planned for next week is quite a treat. I've made an appointment with my PCP and I will plead for more trigger point injections. And...a referral to Cedars Sinai. Way less in my neighbourhood, but not prohibitively so. And a little bird emailed me to tell me that they have the area's best specialists.

Maybe they can get me in before September. We'll see.

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.

Guru left a message this afternoon explaining why checking in Friday evening was a bad idea. Not enough manpower, and I'd likely be left hanging. Still...wouldn't it have gotten me out earlier? At least, not later?

Ah, never mind. Escort was set for Saturday morning--he's picking me up at 7:30am. The guru is understandably hard to reach. Apparently he has 1/2 a day of clinic time a week. But the scheduling coordinator doesn't answer her phone until after 4pm, I learnt yesterday. So not going to bother chasing down an earlier tee time.

His message instructed me to not take any more migraine meds because they can interact negatively with DHE. It was just a message, so I don't know if he means just abortives, or abortives and prophylactics. Still, the instructions say to show up empty handed (like, send your clothes back with your ride--so not happening), so I'll just steer clear of both categories of drugs from here on in.

Annoying, because I'm having a migraine. Not the sinusy one of yore, but what I consider my classic--it feels like my eye sockets are lined in sandpaper and my eyes are leaden and heavy.

As long as I can get to sleep, I should be fine.

I'd like to take a moment to wave at my mother--she offered to take on my anxiety attacks for me, since she'd be having one anyway.

Who knows? Maybe it'll work.

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.

Alternatives

I've embarked upon a number of searches to find ways to manage my migraines other than medication.

Acupuncture: I still do this, once a week when I feel up to the drive on a Saturday morning. It kills a migraine dead, plus I like my acupuncturist a great deal (he's a fellow krav student). I have no idea if it has any lasting effect, but a short term effect stronger than meds? I'm all about that.

Biofeedback: I probably gave up on these sessions too soon. I admit I balk very quickly when a doctor's front desk people give me grief, but still. I got to the point where I could increase the blood flow to my extremities mostly on demand, and that could help alleviate migraines if done really early on. I still use that now. The problem with the other stuff was that I can't tell the difference without the monitoring equipment. I mean, I managed to do it, but only because I could tell by reading what was working and what wasn't. The memory of the effort wasn't enough for me to be able to duplicate it when unwired.

Pain management: This is totally apart from migraine meds. I've had two things--nerve blocks (2 of the 3 worked really well), and trigger point injections (oddly, the ones given to me by my pain management guy worked less well than the ones from one specific ER doc, or my primary care physician).

Dietary modification: I have some really obvious triggers. Artificial sweeteners and nitrites are pretty much guaranteed to cause a migraine. All the migraine specialists I spoke to said to keep avoiding what I could tell was a problem and to ignore anything more subtle. However people more into dietary mods keep telling me it's gluten or it's yeast or some other thing that would stop me from eating bread. I admit, I'm not that open-minded about giving those things a shot. It's not that I think the solution to the migraine problem needs to be easy--just that I don't know I have the energy to stick to anything that's not. My ER escort, as noted earlier, thinks that more salt=fewer migraines. He enjoyed forcing me to finish my bacon last night. Does that still count as sadism, if it's for my own good? Well, it probably doesn't count as sadism because I got a chocolate cupcake for my troubles. Still, pretty close. (side note: bacon's nitrites have never sparked a migraine, but most other meats will give me the whammy)

Physical therapy: This is either good or bad. On a delicate day like yesterday, they can't really touch me without triggering a migraine. I quit my last PT guy for a number of reasons, but even if I hadn't I was going to make sure he stopped working my neck. The pain bounces right up into a migraine, and he provoked at least one sick day before I bolted. The current PT people--well, I get a light massage, some ultrasound, heat, ice, and electrical stimulation, and then they watch me do my daily exercise. The best thing about them is that I get no grief for last-minute cancellations. My life has to be as cancellation-friendly as possible, sadly.

Psychotherapy: This is pissing me off. This post became more urgent because of the call I just took. I decided to go to a therapist to get coping mechanisms for my response to migraines. The guy decided he wanted to cure them. Admirable, but not the point. Not my point, anyway. I saw him 4 or 5 times, and was never able to get him back on the track *I* thought I needed. So, with the impending hospitalisation, I cancelled my upcoming appointments via phone message, telling him that I'd re-evaluate my direction after the DHE infusion. The bit where he calls me a couple days later to ask me to go over my intentions at least twice? Not endearing him to me. The bit where he tells me that my neuro and migraine guru want me to see a therapist? Not convincing me to make that therapist *him*. I hate being nagged, and he's nowhere near enough to me to get away with it.

Botox: Boy, did I hate this. I lost the ability to furrow my brows. And that's a key part of my teaching style. But seriously--it made no impact whatsoever on the frequency or severity of my migraines, and even the partial paralysis (didn't affect the lower half of my forehead) wore off pretty quickly. Figures, doesn't it? My body killed that toxin right dead.

And how long have you felt this way?

I've been having migraines for 30 years now, give or take. Since I was 8. I'm not sure when I decided they were migraines, and I know that at some point in my late teens I decided they weren't migraines, but cluster headaches.

How did people self-diagnose before the web? Wherever could I be getting my incomplete information?

I think I doubted them because I had no aura, and that always sounded like the big thing that separated the sheep from the goat.

The pain was very strongly lateral in those days, but I didn't know then that that was a migraine symptom too.

Of course, I haven't been "persistent and intractable" for all 30 years. Just a couple. They were pretty intermittent up till recently. Hell not only did I not know people went to the ER for severe migraines, I didn't even know about migraine-specific medication.

Boy, have I made up for lost time, or what?

I get auras now...I'm getting most of the symptoms, but thankfully not all at once. I've been asked by how long the auras precede the migraines, but to be honest it's very hard to tell. It's a bitch to take triptans for the very same reason--they're supposed to be taken as early as possible, but I rarely notice the start of a migraine. It's more like "Huh. Been feeling this crappy for an hour or two, eh?"

The first time I noted auras, I thought I'd unknowingly detached a retina. Because it was that same sort of visual interference--a ball of white light running up and down the outer edges of my vision. Occurs to me now that my self-diagnosed detached retina a million years ago may have actually been a precursor aura.

Ah, well.

The nature of my headaches has changed a lot. I used to get clarion clear pre-migraine symptoms: a craving for ginger and fish. These days there isn't enough space between them to have a "pre-migraine" period.

Learning that sinus headaches and migraines were linked was a bit of a revelation. Because I get a lot of those too. I'm in day three of one now, if you don't count the more traditional migraine of yesterday evening as starting the clock all over again.

They're a clear, bright, unilateral pain, and feel like...feel like someone's scraping a dry spoon across the inside of my brain pan. You can imagine that, right? Like a metallic version of nails on a chalkboard, with associated vibrations that run down your body?

None of the meds really work on these. Napping gives me a break, and they go away on their own.

The nose may know, but it sure doesn't remember

Allergic rhinitis is one of the few things I was tested for that came out positive. I'm an eerily healthy woman suffering from "persistent and intractable migraines."

But I am allergic to dust mites, and a little to grass.

The anti-allergy meds are so hard for me to remember. They're not fittable into a nifty pill case and taken with me wherever I go. No, I need to remember, morning and evening, to double-squirt the Nasonex, and one squirt each nostril of the Astelin.

I have no idea if the allergy contributes to the migraines, but I can't argue with less congestion.

I'm half-assedly managing for dust mites at home. I have a Roomba now, because that's the only way the place can get vacuumed more than once a week. Mattress is esconced in a noisy mattress cover, and the stuffed toy is periodically frozen (I'd wash it in hot water, but the poor thing is delicate these days--certainly won't stand up to weekly washes).

We'll see.

Med-Go-Round

Right now my prophylactics (daily meds to minimise (in theory) the severity & number of migraines) are:

Depakote, 3x150mg --it's an anti-epilepsy drug

Elavil, 1x1000mg --it's an anti-depressant

Vitamin B2, 1x500mg

Magnesium, 1x500mg

I couldn't tell you how any of them are working. I couldn't even tell you side effects. I think I'm just used to feeling weird, one way or another.

This particular mix is a few weeks old. Drugs I've come off of include:

Neurontin

Topamax

Wellbutrin

Cymbalta

Probably more. It's hazy by now. But basically anti-depressants and anti-epileptics. There is another popular option of beta blockers, but I have crazy low blood pressure (escort opines all my migraines can be fixed with some good old NaCl, but having had a bag of chips yesterday, I don't know if I could live that way...) so those are out.

Abortives, drugs taken once the migraine is on include:

Imitrex (15 or so a month)

Maxalt (15 or so a month)

Frovatriptan (9 or so, so far)

Eh. None of them work reliably, but they're better than nothing so I keep going through the mechanics.

My insurance company hates me. I think they would rather I took no more than 9 of just one of those triptans a month.

Hey, me too. But let's accept the impracticality of that. I had to get dispensation to fill 18 Maxalt and 18 Imitrex. Then I get prescribed 18 Frovawhatsits, and they're just not happy. Hell, even for the Imitrex and Maxalt I have to fill them twice a month, instead of 18 at once.

I figure they're a lot cheaper than ER visits, but I'm not in charge here.

Rescue medications (taken in case the prophylactics allowed the migraine to start and the abortives failed to stop it--mostly I'm trying to be unconscious):

Percocet

Flexoril

Ambien

I'm not on any of them these days. I had an initial 50 pill presciption of Percocet, plus assorted leftover Flexoril and Ambien. I tossed the leftover drugs in a fit of toeing the line, and my neuro won't give me a prescription of Percocet in a high enough dosage to even touch my pain. So I have nothing--if I need rescue, I either suck it up or call for a ride to the ER.

ER drugs (the first 5 are the migraine guru-recommended combo):

IV Compazine--massive anxiety attacks. Can't take this unless it's with

IV Benadryl

IV Toradol--it's an anti-inflammatory

IM Imitrex (the abortive, but shortcut)

IV Dilaudid--I've had up to 10mg, and that was just awful, and there was no added relief once I went past 6. Escort won't let them give me more than that.

IV Demerol--just no. That was horrible. Escort had to keep me talking throughout the paltry 2mg because when I stopped talking I fell asleep and then woke up with a horrible start because I'd stop breathing

IM Dilaudid--yeah, that was by mistake because the IV slipped. So very miserable.

IV Phenergan--sometimes given to me when escort informs them of the adverse reaction to compazine. Don't have a clue what it does.

The dilaudid has anxiety side effects too, and I've finally discerned (with some reading up) that the anxiety attacks I have the day after are probably med-related. Doesn't make them go away, this knowledge. But it does make them a wee bit more bearable.

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.