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.

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.

"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.

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.

Check

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

Not sure what else is next.

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.

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.

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.

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.