And Anthem Blue Cross for the block!

Well, I've joined the legendary ranks of the HMO-denied. They have determined that the ketamine treatment is experimental, so I can't have it under their plan. I'd have thought the simple math (1 ketamine treatment costs about the same as 1 ER visit) would have helped tipped things in my favour but no.

So where do we go from here? I can pay out of pocket under the PPO portion of my health plan, or I can appeal. I haven't thought much about either yet, although the former isn't tempting, what with the lack of a job sitch and all.

I hadn't honestly considered that they'd turn me down, not with all the wrangling it took to get this far.

::bites lip::

Everything has been pointing towards this. The meds juggling was just treading water, as far as my hopes have been concerned, such as they are.

Well, I see the migraine specialist again this coming Monday. That should be fun.

The cervical nerve block is both a therapeutic and a diagnostic procedure. Turns out that I received no alleviation of pain on extension and flexion (up and down motion) of my neck, but I wasn't supposed to. I did get more range of motion turning side to side, which means we move on to step two--Radiofrequency Neurotomy which is basically blasting the shit out of the offending nerves, a procedure that might provide relief for as much as two years.

I just hope they'll remember how poorly the Versed worked last time.

Bring on the new year--the procedure will be done one side at a time, left on the 8th, and right on the 22nd.

Add one more doctor to the stable

I have a new pain management doctor. One who seems very motivated and says that he has great interest in the problem I have with my shoulders and neck.

He diagnosed me with cervical facet disease and is performing a procedure on me tomorrow to numb the nerves in question. If this provides *any* relief for the neck and shoulder pain it is well overdue. I mention it all the time at the ER and to my other doctors, but apart from one recommendation of physical therapy didn't get much results. And the PT involved touching and manipulating the area which more than once sent me to the ER with exacerbated migraines.

He makes no promises, especially about the migraines, but the neck and shoulder pain needs attention too.

Looking Elsewhere

I have a simple Google alert set up so I can stay on top of new mentions of the affliction. It's usually pretty boring--quite a few "Migraines are worse than you think" articles, and every actual piece of news gets repeated in many places. But it's easy enough to keep up with and I do learn of sports stars and other celebrities who suffer with what I do.

Sometimes, though, one comes down the pipe that I don't know what to do with. The most recent of this type is headlined "Ayurveda may cure migraine." Ayurveda. Off the top of my head I thought something to do with yoga, but it's a full fledged alternative medicine system.

Which means, of course, it's nothing easy to try. But here's more the Indian Daily News & Analysis magazine had to say:

If not cure, the Ayurvedic Treatment Protocol (AYTP) comprising aahar (diet), vihaar (lifestyle) and aushadh (herbo-mineral formulation), promises conditions ‘close to cure’. Dehradun-based Ayurvedic physician Vaidya Balendu Prakash, the pioneer of AYTP, believes that migraine has been treated as a neurological disease for ages, and was therefore dealt with only through painkillers.

“After a close analysis of the disease, I found that it was more of a gastroenterological disorder rather than a neurological one,” he said. “Most of those suffering from migraine had issues like acidity and stomach problems. But modern medicine ignored this aspect,” he said. “So we altered the lifestyle and diet of those getting migraine attacks. And it worked within 120 days,” said Prakash.

I can't chase down everything, especially not at the same time. But I will make a note of this.

More Medication Manipulation

Still on the trail of the ketamine treatment. I understand that my specialist is pursuing it with my insurance company. I leave that in his hands, but I am impatient. My next appointment is the coming Monday. Hopefully there will be news.

Last tweak he performed was to add an anti-psychotic (Zyprexa) to my regimen, and to drastically drop the beta blocker (Inderal) and the anti-seizure (Depakote) medication. The goal being to lessen my dizzy spells and improve my appetite without "all the wheels falling off" (his words).

Jury's back in. I gained weight, which is good, but the migraines are wicked bad. Looks like Zyprexa is well known for weight gain, so that in addition to the lessened nausea are positive. But I'd trade some levelling off and even some dizziness for lessening the migraines again.

Huh. I notice that Zyprexa also has insomnia as a side effect. Check.

Hmmph.

Closing in on K?

We may be nearing something--there's someone in LA who might administer me ketamine. He does it for another condition, but my specialist seems guardedly optimistic.

Remuneration might be an issue. It remains to be seen how it will work out with insurance, although there is guarded optimism about that too. The specialist did say he considered paying half the costs if Blue Cross wasn't going to come through...his wife threw the appropriate fit. I couldn't do anything but laugh. I wasn't sure how to react. He just feels I've been this way too long.

Him and me both.

So if this happens, it could be soon--within a week or two.

Cross your fingers.

Beta-blockers and Vitamin D

It's motion, I guess. I didn't get to see the article, but Dr. Specialist found mention of a combo treatment with depakote (which I'm already on) and beta-blockers, so I'm adding propranolol to my bouquet of medications. Another blood test scheduled to be taken--something about possibility that my levels are too low, and that that could be tied in.

As for things that don't go into my blood P.O., he's still angling for ketamine or propofol, but he needs to convince the companies to pony up, and then UCLA needs to come round. Sounds like fun, huh? A backup plan involves borrowing Cedars Sinai resources, in case they're more accomodating than "home."

He's also presenting my noggin to the internal headache group. Dunno what's taken him so long.

I whined to him about the ER--the last two visits were nearly pointless...medication doled out in dribs and drabs, even though the last ER doctor managed to get in touch with the specialist while I was there. 8 hours, maybe 2 points reduction in pain.

I think it made him angry. They've gotten to the point where he's taking affront--when they say no one gets 6mg of dilaudid ever, and I say that's what I got last time, and they tell him they can't find my records...well, there's this nifty web interface he showed me. I can just about find my records. And that's before you get to the bit where one of his patients is in pain. Hmmph.

COBRA better not break my budget during the job gap. Things are going to be hard enough.

How Special is your K?

I see my GP every 4 weeks and he handles my MS Contin. I see the migraine specialist every 3-5 weeks, and he handles, well, all the other migraine drugs. With those frequent appointments it's easy to lose sight of a big plan, but I finally remembered to ask the specialist where exactly he was headed.

Ketamine. Special K to the crazy kids. Horse tranqs. In some scenarios it's used to induce comas, but I'm rooting for that not being me. He wants to use that to break the cycle of headaches, and then find the right prophylactics, since we're currently rooting around blind.

Problem is, it's not an established procedure, and I'm not even sure ketamine's in use at UCLA Westwood. So he's wrangling with some Boston folks on my behalf.

It feels very slow. The pain's building up on a weekly cycle. I need to tough it out so that's not Thursday/Friday, but Saturday/Sunday. To make work easier. I mean, I'm here. I just want it to be easier.

Diet Experiment Notes

I wish I had something exhilarating to say about the diet experiment, but I don't. The simplest truth is that I've been to the ER once on the no-wheat no-tyramine diet, and I'm in day one of another pretty bad one right now. Today I decided to let the tyramines back in. Despite not feeling abstention made a significant difference I'm still going to go through the motions and finish the whole thing out.

Research shows skin pain sensitivity increases with migraines. Why don't they just ask me?

Actually, honestly, I thought it was obvious. Just like the light and sound and smell sensitivity...sensation just gets more painful when a migraine's on. I thought it was all accepted truth. Hell, I thought light and sound sensitivity were just normal headache stuff. It wasn't until I started paying special attention that I learnt that they were part of what defined a migraine.

But yes--if you didn't know--steer clear of the skin of a migraine sufferer. Do not brush their hair. Especially if they're female or fat or depressed.

Two out of three ain't bad.

The Tyramine Principle

It would be hard to avoid something like tyramine in your diet without understanding what it is. Otherwise it's hard to predict where it might show up, and you're left bound to whatever was on the last "allowed foods" list you read.

This page on a low-tyramine diet is very helpful in that regard. I like patterns better than rote memorisation.

Tyramine is a natural substance formed from the breakdown of protein as food ages.

Der! My migraine specialist had said that avoiding tyramine would involve a more European-style diet, shopping and cooking right away. Until reading that page I thought he was referring to avoiding prepared foods with preservatives. Sure, those too, but tyramine levels can increase in my own home--just having them around for a while can have that effect.

Fermentation. Fermentation is the devil. I'm not avoiding soy sauce because of the soy, but because of the fermentation. So soy milk may be back on the list. Good to know, especially since I intend to limit dairy.

Any protein food, improperly stored or handled, can form pressor amines through protein breakdown. Chicken and beef liver, liver pate, and game generally contain high amine levels due to frequent mishandling. Game is often allowed to partially decompose as part of its preparation.

There's so much reading to be done. I'll never finish.

Diet Plan

Had another appointment with the specialist today. He's been stonewalled in his attempt to get me anaesthetised either as an in- or an out-patient, so he's going try and get me a referral to Cedars Sinai.

He's out of medicine, he says.

I brought up dietary mods, and he agrees that tyramine and wheat are a good place to start, although wheat is difficult. I don't doubt that for a second. The idea is to quit as much as possible for three or four weeks, and if it has made a difference, start introducing foods slowly back in and see what makes the needle wiggle.

I figure wheat will be the first thing back in, if I don't snap horribly beforehand. His tyramine recommendations are from the National Headache Foundation, and look...oh, I don't know what's doable and what's not. His summary of the whole thing is that I'll be eating European-style--fresh food, freshly cooked. It would be great if it were just that simple.

Here's what I can have:

* fresh meat, poultry, eggs.
* a fairly generous range of foods dairy-wise, but I don't think I'll take advantage of that. Since I can get protein from meat, I won't lean on cheese for it instead.
* most vegetables and fruit

It also seems to be limiting my chocolate and molasses and licorice consumption. Honestly, putting chocolate in that sentence makes it seem so much less appealing I could even give that up for a heartbeat or two.

I figure that in the first day or so of the juice cleanse I'll do a long slow Wholefoods/Trader Joe's shopping excursion and lay out a plan for a few weeks of healthy eats, and work out how often I'll need to be shopping to sustain this lifestyle.

Potential toxin #1: Tyramine

http://en.wikipedia.org/wiki/Tyramine

My specialist mentioned that one of the few medications left untried was something tied into adrenaline, but that would require dietary modification because I would run the risk of ending up with either too much adrenaline in my system, or too much adrenaline precursor. From reading the Wikipedia entry on tyramine I wonder if it's related. I'm pretty sure he also mentioned MAOI inhibitors.

In humans, if monoamine metabolism is compromised by the use of monoamine oxidase inhibitors (MAOIs) and foods high in tyramine are ingested, a hypertensive crisis can result as tyramine can cause the release of stored monoamines, such as dopamine, norepinephrine, epinephrine.

The entry goes on to say there are no conclusive links between tyramine and migraines, but, well, conclusive isn't helping much is it? So this is a possible avenue of deprivation to explore:

Foods containing considerable amounts of tyramine include meats that are potentially spoiled or pickled, aged, smoked, fermented, or marinated (some fish, poultry, and beef), most pork (except cured ham), chocolate, alcoholic beverages, and fermented foods such as most cheeses (except ricotta, cottage cheese, cream cheese), sour cream, yogurt, shrimp paste, soy sauce, soy bean condiments, teriyaki sauce, tofu, tempeh, miso soup, sauerkraut, broad (fava) beans, green bean pods, Italian flat (Romano) beans, Chinese (Snow) pea pods, avocados, bananas, eggplants, figs, red plums, raspberries, peanuts, Brazil nuts, coconuts, processed meat, yeast, and an array of Cacti.

I just have to find out what would be left over, especially when it comes to proteins--poultry, beef, some fish, and most pork? What's left? As is, it doesn't look sustainable for too long. If the reduced diet is stressful, after all, the whole effort will be counterproductive.

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.