Karen (estherchaya) wrote,
Karen
estherchaya

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balancing priorities

An interesting opportunity may be coming my way, but it will require some sacrifice on my part. I'm taking some time to weigh my priorities to figure out what to do. The short story is that I may have an opportunity to particpate in a migraine study that looks to be extraordinarily promising. The sacrifice is that I'd have to not get pregnant for a year (nor even attempt to get pregnant).

Some background:
I've been getting migraines since I was about two years old. We didn't know then that they were migraines, but looking back, my first neurologist figured that my first migraines were in my toddler years based on the history my mother gave her. Migraines suck. If you've never had one, I'm not sure I can describe it to you, but they seriously suck. I have had so many migraines with such intense severity that my entire pain scale is skewed. I don't even have a real sense of what level of pain I'm in most of the time now, because pain is a pretty constant state in my life.

I've taken probably 3 dozen different preventive medications with varying results. None of them work quite well enough, some of them work better than others. All of them have pretty big drawbacks when it comes to side effects. Topomax made me lose feeling in my hands and I burnt myself fairly badly as a result, but it worked really well. Depakote came with about a 60 pound weight gain over the years that I took it, but it took the number of migraines I got per month down by probably 60%. Inderol (sp?) helped but threw me into the only true depression I've ever experienced. The depression was completely alleviated after I got off the Inderol. Verapamil didn't help. The list goes on and on and on. I've literally run out of drugs that I can take.

When you run out of preventive options, you start looking at pain relief options. Nothing fully relieves the pain of a migraine for me. I can't take Imitrex nor any triptan class medications, which are considered the migraine miracle drugs right now. Aleve takes my pain down from a 9 on the painscale to an 8.5, maybe. Codeine on top of it, particularly if coupled with caffeine, will get me down to maybe a 7.5 or 8. Beyond that, percocet helps, but no doctor will prescribe it to me for chronic pain. In fact, doctors don't really like to treat chronic pain. It's a dangerous area for them. Lots of red flags. Nothing else helps. I think Vioxx did a decent job, but it's off the market.

And that's where I am. I get between 3 and 6 migraines a week if I'm unmedicated. In a good month, I get 10 migraines that month. In a bad month, like last month, I get 25. I am also not exaggerating.

One more Medical Detail:
In 1999, I had the first of several migraines so severe that I lost feeling on my left side for several days. Because there was some concern that this was actually a TIA or stroke, I had a battery of tests done while I was in the hospital for several days. I had two MRIs (both negative for stroke, so it wasn't a stroke), a lot of blood tests, and a TEE (transesophogeal echocardiogram). This is a test where they put a camera down your esophagus (sp?) to take a look at your heart. It is every bit as unpleasant as it sounds and I had a masochistic cardiologist with a preference for having patients be awake during a TEE. (Every doctor I've talked to since has said that's almost unheard of). During the TEE, the cardiologist discovered that I had something called a Patent Foramen Ovale (PFO). A PFO is no big deal; about 1 in 5 adults has it. What it is, is that when you're born there's a flap between the two chambers of your heart called the foramen ovale. Within a few weeks after birth, for most people, that flap closes and the hole is closed along with it. About 20 percent of people DON'T have the foramen ovale close, and it's called a patent foramen ovale. Generally speaking, this causes no problems for most people, though there's a slightly elevated risk of stroke because of it.

How this all ties together
Several years ago, Seth found a small retrospective study about PFO and migraine. Apparently, there was a surgery that could be done to close the PFO, and this was being done on a trial basis for people who had suffered strokes. Turned out, a bunch of those people reported after the surgery that they'd had a very strange side effect of the surgery: many who had previously suffered from migraines, noticed that their migraines were either gone completely, or had improved considerably. A pattern started to emerge. In one retrospective study about 50 percent of the study participants with PFO who had the surgery had migraines (with aura). Furthermore, the retrospective study showed that of those patients, a significant portion of them noted fewer migraines or reduced severity or even complete resolution of migraines. The initial results looked amazing, but the studies were small and only retrospective. Some larger scale retrospective studies were conducted and the results were even more astounding. Finally a study was conducted to determine whether there really did seem to be a link between migraines and PFOs. This wasn't a treatment study, just an informational one. Turns out, something like 40% of people who suffer from migraines (with aura), have a patent foramen ovale. Seth and I followed the studies very carefully as they came out. I looked for news of full-scale studies with migraines and PFO closure for years. I read everything I could find. I talked to a cardiologist about getting my PFO closed, but he wouldn't do it (no studies had shown this link yet).

Today, three studies are just getting underway, to specifically study the effectiveness of PFO closure on migraines. Several years worth of waiting and research and finally these studies are happening. And I'm literally the perfect patient. I have exactly the right kind of migraines (classic migraines with aura). I have already had a PFO diagnosed. I have had failures with preventive medications. I'm willing to have heart surgery (minor heart surgery, I should specify) on a maybe. I am willing to keep a headache diary for a year.

I have only two possible exclusion criteria from the study. It's possible that I get too many migraines per month, but there's no way to tell just yet. It depends on the month. If in the next month I have fewer than 15 migraine-FREE days, I will not qualify for the study. Some months are better than others. IfI get through this one month qualifying phase, I am fully qualified for the study.

The other problem is that I would have to agree not to get (or try to get) pregnant for a year.

If I went through with the study and do fully qualify, and I get in NOW (as opposed to several months from now), I would not be in the randomized, double-blind, placebo phase of the study. I would definitely get the device to close the hole in my heart. The device costs about $20,000 and is not currently covered under insurance. The preliminary studies are showing such astounding results that it's hard to ignore.

And yet... I have no guarantees about how long it will take me to get pregnant again. I'm not a normal human who can say, "Oh sure, no problem, I'll wait a year and I know I can get pregnant again." In four years of actively trying to conceive, three of which we were actively pursuing increasing amounts of medical intervention in the pursuit to conceive, I had exactly one pregnancy. A pregnancy I was unable to carry to term, for whatever reason. I don't know that next year I'll be just as likely to get pregnant as this year. Nor do I know that if I turn down this opportunity and continue fertility treatments... I don't know that at the end of a year I'll be pregnant. I could be not-pregnant and regretting losing my opportunity to be in this study.

The studies will be going on for years, so I could just wait. Except if I wait, I'd be randomized. Double blind. Placebo. 2/3 get the real device. 1/3 gets the placebo. That means heart surgery for a 1/3 chance of having a placebo. And that means 1/3 chance of having a placebo and then still for a year not being able to change my medications, get pregnant, or try any other treatment for migraines. A year of keeping a headache diary every day without having the benefit of the actual device. Mostly, I'm caught up on the 1/3 chance of placebo, but still having heart surgery. However minor it is, that's pretty huge in my book. But if I went into the study now... I'd be guaranteed the device. The device with such promising preliminary results. The device that could very well show me what life without migraines is like. I have had only very short periods in my life where I was relatively migraine free. But whenever I found a drug that would show me that world... the side effects of the drug would be so intolerable, unbearable, or downright dangerous, that I couldn't continue taking it, and I'd be back to migraines.

Migraines are more than just pain. At least migraines with aura are. My vision goes all wonky. My sense of balance is disturbed. My sense of taste is affected. I get nauseated. It hurts to blink, it hurts to swallow, it hurts to move my eyes. I get blind spots, sometimes for a few minutes, sometimes for hours, always associated with absolutely excrutiating pain.

I know that if I had a guarantee of getting pregnant this year, there'd be no contest. I'll take pregnancy over migraine relief any day. Because when it comes down to it, I've had migraines for almost three decades. I know how to deal with them. I DO deal with them. I function rather well even when I have a migraine, because that's what I have to do. And there is nothing I want more in this world than to be pregnant (and stay that way) and have a baby.

For now, I'm completely torn. I almost hope that I get too many migraines next month to meet the last bit of criteria for the study. But for the moment, what I'm going to do is start the qualifying phase of the study in which I track my migraines with a PDA headache diary for a month. This month I have no fertility-related decisions to make anyway, so it can't hurt. If I do qualify, though, I don't know what the hell I'm going to do.
Tags: headaches, migraine
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