"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.

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.

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.

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.

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.