There are foods that are already and clearly on my no fly list, since my sensitivity is dramatic and swift.

Aspartame: I want to say all artificial sweeteners, but that doesn't make sense--it's probably just that I dislike Splenda. I avoid them mostly anyway because of the slippery mouth feel and unpleasant aftertaste, but now I even avoid most chewing gum, since ten minutes of chewing can start the pain.

Nitrites: This is another one I discovered by myself. Suddenly pepperoni pizzas were no longer palatable. I studiously avoid all sausage with nitrites in them, and limit my bacon intake--it's good that I live in a large enough market that I can find breakfast meats light on the preservatives.

Mint: Not always, but sometimes. And when it does, it sends me over hard. Often it's mint and sweet, which is why I don't chew gum anymore, and why I've switched to weirdo toothpaste.

These are the biggies--the ones where I still have the taste in my mouth when the pain sets in. They are the easy ones, since I don't miss them. Feeling them trigger pain makes them no longer tasty. I have some misty technical sadness at the loss of pepperoni, but I can't look at a slice of the pizza with hunger anymore.

The next part of the investigation will be much more complicated.

Next week. Next week it is. The cleanse starts next Friday, for three days.

Which gives me a week to decide how limited the ensuing diet will be. No wheat? Gluten? Yeast? Caffeine?

Tick, tick, tick.

"He can thoroughly enjoy the pepper when he pleases"

http://www.prweb.com/releases/2008/03/prweb735184.htm

I'll have to go track that down. I don't relish the idea of spraying hot pepper up my nose, but these are desperate straits, and the FDA says it's okay.

Hell, I poured vinegar up my nose (don't ask) on much less authority, so this'll be nothing.

Yeah, well, I do

She Still Will Not Complain

Another woman who calls her migraines a friend--but at least she seems to do it in a smack-talking sort of a way.

she now gets by with 16 prescription medications, 9 over the counter pills, and weekly shots at the Diamond Headache Clinic of dolophine (Methadone) for pain and promethazine (Phenergan) for nausea. On the afternoon I saw her, she described the sharp headache behind her left eye as about average for her — a “6″ (10 being the worst). But because of the dramatic weather changes outside, she rated her second, more diffuse, headache — which emerged in 2001 on the back of her head and down her neck — as higher-than-average, a “7”).

Ha! I'm lucky--I don't take as much medication as she does, and my hospital visits aren't as regimented, but it sure looks familiar. Not to mention the simultaneous headaches. I haven't tied mine to the weather yet, though.

All in all, she sounds like a tough old broad--tougher than I am, for ill or not.

Sometimes not looking like you're in pain isn't about being tough or strong--sometimes it's simply about not wanting to go into any sort of detail.

Finger licking good

I think I'm going to attack diet.

It might seem weird that it's only coming up now, but it's not, really. I've made adjustments to my diet but they weren't arcane in any way, or requiring of any detective work to suss out. I can get a migraine from the Nutrasweet in a stick of gum before it loses its flavour, or be sunk by the nitrites in a sausage before finishing the dog. Nice and simple, easily avoided.

What if there's more? In stuff I mind giving up, or which is kinda hard to ignore?

So I'm going to go terribly LA and do a cleanse, and then embark upon a couple weeks of a restricted diet and see what happens.

Thing is, my last cleanse had me incredibly pissy and migrainey by day 2...I have to make sure I'm not running that risk again. So I'll probably opt for something embarassingly chi-chi and expensive in terms of a cleanse, and then buy out half of Wholefoods for my restricted diet afterwards.

As for restrictions--where to start? Wheat, I think. Let me see if I can do without that a while.

"Ictal"

I learnt a new word today.

Medical Dictionary: ictal
(ĭk'təl)
adj.

Relating to or caused by a stroke or seizure.

Really, I was just looking to know what interictally means--it pops up a lot in the articles Google Alerts throw at me, and it seemed the simplest of the new words.

I don't read all of these articles, and I certainly don't read them all to understand, since they're at different levels of medical intricacy. But once upon a time I had a brain, and maybe I can pretend right now.

Why can I pretend? I think I may be in a moment of stasis. I don't want to shout it from any rooftops, since it's only been a few days. But since my ER visit on the 14th and the lowering of my morphine dose to 30mg/8 hrs, the world seems clearer and less painful. I've been able to stave off every migraine with Stadol, although its side effects aren't fun. Still, I can take it and go to bed, and all's well when I wake up.

I don't know if this is it. I'm on Namenda, Elavil, Depakote, Lyrica, and Sansert as well as the morphine and various nutritional supplements. It's like soup in there. I tremble, I tire easily, I'm light-headed and I'm way too close to sleep at every moment. But it's a lot better than a week ago.

I have to say, Siri Hustvedt blogging at the NY Times is more sensible than the last one I linked to. I think she's a bit whack when she ascribes some marginal positivity to the affliction by considering them as a regulating force in her life, preventing her from overdoing and overfeeling.

I'm so far from over- right now, it's not funny. I just want to do, and to feel.

Morphine No More

I'm quitting morphine today. In the two weeks during which I haven't posted I've been floating on a cloud of side effects: the continual urge to sleep which bested me more than once when it shouldn't have, the impaired memory, the loss of hand/eye coordination, and the poor balance.

Oh, and about a migraine a day.

Even if it had cleared me of migraines totally, if these are the side effects I'm going to have forever, it's not a solution.

I asked my GP if I could just go cold turkey, since I'm eager to get it out of my system. He's pretty adamant that I should not, so I'll be going in to get tapering-down prescriptions from him as well.

Also started taking Sansert in this hiatus. The timing kinda coincided with the pronounced edema in my legs (which has extended to my hands as of this morning). Is there a correlation? We shall see. At least it's not a blood clot. Blood clots are bad things, and worse things for me what with that hole in my heart.

From Fentanyl to Morphine

Two weeks ago my GP presented me with the option of chronic pain medication. It was the only next step he had left. At the time I opted for Fentanyl patches, figuring they'd be simpler to handle, since each one lasts for three days, trickling a slow dose of narcotics into my system and hopefully killing pain quietly.

The process requires titration--my GP gave me a prescription for 25mcg/hour, but on speaking to my migraine specialist I doubled the dose on the second day. In his estimation the amount of IV dilaudid I was taking indicated a resistance to narcotics sufficient to make the first step of 25 too small.

Adjusting to it was not fun, but it was doable. I avoided driving for the first few days, and all was pretty much well.

Two days ago my GP changed my chronic meds to MS Contin. Yes, girls and boys--la migraineuse is on morphine. I don't remember the dosage off the top of my head, but the calculations were made so that I wasn't starting over from scratch--the MS Contin was going to pick up in strength right where Fentanyl was leaving off.

But I'm having a whole 'nother adjustment period! I didn't want that.

I've explained it to my boss, and so I'm off to work from home for the rest of the day.'

The work will get done. Perhaps not traditionally, but it will be done.

Talky Meat

After getting pissed at Jennie whatserface I did go into the ER.

There's really no point pretending that there's no social component to the visits, at least at these two hospitals. The doctor saw me ahead of the next person in line because he recognised me, and he apologised for not having my dosages memorised, and let me dictate them instead. When I said I was still in pain I got more without any discussion too.

I didn't get a chance to talk to the nurse that says she'll call me next time she's going to go shooting, but I did get a wave and a frown from another nurse we'd chatted with at length during the last visit here. The registration guy waxed very eloquent about advanced directives and their scope. He seemed glad for the opportunity to chat.

A day later the pain is minor, so it was all worth it. It's still too frequent, but at least it worked.

It's my sister's last day in town, and among her errands is dropping by the other ER to leave a gift and card for the nurse that finally treated my symptoms as worthy of the proposed dosage, as well as got a line in quickly.

Two weeks here and five ER visits, if I count correctly. Quite the crash course.

Oh, how very pleasant for you

Google alerts yanked this Huffington Post blog post for me last night. It's about coming to terms with migraines.

I'm not going to argue with her on the extent to which her changes helped her, and I do think I could stand to implement a couple things she suggests. I'm happy for what she says:

after fourteen years of desperately trying every remedy under the sun - every drug, every herb, every abstinence, every kind of healer from traditions all over the world, I finally found something, last year, that helped ease the pain: words.

In fact, Jennie Nash quotes Joan Didion who says:

I have learned now to live with it, learned when to expect it, how to outwit it, even how to regard it, when it does come, as more friend than lodger. We have reached a certain understanding, my migraine and I... And now that I am wise in its ways, I no longer fight it. I lie down and let it happen...[and] when the pain recedes...I count my blessings.

I'm happy for them both.

I have learnt to accept that the pain will come, but I feel like I'm betraying the side by doing so. Still, I can't stop it. I don't fight the migraines anymore, but I can't see welcoming them as friend. Neighbour perhaps, but why friend? What do I get out of it that makes it a friendship?

Jennie talks about detailed migraine logging. I don't. It depresses me. I could. I could note that I woke up into a 6 (which is great considering yesterday's pain), ate a few bites of leftover marinara, a slice of harddough bread with apricot preserves and a mouthful of orange juice. After a shower, the migraine was up to a 9.

How much do I write? That it's on the right side? That the nausea is low? If I get more nauseous in an hour do I write that too? How could I look at that tome of pain and still feel vaguely friendly?

But mostly it's her #6 that gets me...

6. Know that the pain will recede. Because it always does.

Thanks, Jennie. Except the doctor told me to stop waiting for it to recede. Day 7 of a severe migraine isn't doing anyone any favours. Which is why after I finish typing this up I'll get dressed and head out to the ER. I do hope the pain will recede. I will count my blessing when it does. But don't ask me to be friendly towards the pain that's driving me back to the hospital. That's not sensible.

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.