Chez Perky

One more Google Hit Before Bed (Updated at the Bottom)

I'm exhausted, having been kept out way past my bedtime tonight, but I noticed a keyword search in my statcounter I didn't want to ignore...

heart surgery for treatment of migaines: For those of you who are relatively new to my blog, you probaby have no idea why this would have popped up my blog in a google search. But whoever did this keyword search should know that yes, there ARE currently three concurrent studies going on that involve heart surgery for the treatment of migraines. It seems that a large percentage of migraine sufferers have a "patent foramen ovale" which is a condition in which a small valve which normally closes at or near birth didn't close, so you've essentially got a small hole in your heart. This is generally not considered a huge deal and most people who have one never know it, but it is beginning to be associated with early stroke and with migraines. A recent couple of studies involving closing the PFO for stroke patients showed a surprising number of patients who had the lucky side effect of total or significant resolution of migraine symptoms after having the PFO closed. Thus, some new studies have been started and are currently in progress and recruiting patients.

I almost participated in one such study but was disqualified because I get too many migraines. Truth be told, I didn't try all that hard to qualify. There was a qualifying month in which I had to keep an electronic headache diary that I transmitted to the clinic every night. If during that month I had been extremely cautious about every single migraine trigger I have, and if I'd worked harder to sleep more and work less, I probably could have stayed under 14 migraines in that qualifying period, though it would have been challenging since I was just weeks post-miscarriage and in a very busy period at work. But I also knew that qualifying for and participating in the study would have meant taking a year off of the whole fertility treatment thing and I just wasn't sure I was willing to make that sacrifice, even if the payoff was the possibility of a life without migraines. Even the debilitating, life-altering migraines I get on a regular basis. It wasn't an easy decision to make, so obviously, my sub-conscious made the decision for me.

If you want to read more specifics about my experience with trying to decide what to do about the study, look at my posts from November 4-15, 2006. If you want to talk in greater detail about the studies themselves or what I know about them, please feel free to email me directly.

Edited to Add: I was just re-reading my posts about the migraine study and my decision-making process. I waffled a lot about whether to participate. It was a really hard process for me, because the bottom line was that if I'd qualified and decided to participate, that would have meant going on birth control for a year, which was a huge thing for me, shockingly enough. This post in particular, highlighted the conflict of emotion I was feeling through the process, but one line stood out above all:

And yet... I would gladly suffer migraines forever in exchange for a baby.

It's still true, you know. As much as I complain about the migraines... as insufferable as they are... I worked so hard, cried so many tears, suffered so much (and yet, not nearly as much as many of my fellow stirrup queens)... these babies are what I wanted. They are what I want. I wouldn't trade them for anything. Not even a life free of migraines. I'll take the heartburn and the sciatica and the nausea and the round ligament pain and the oxygen deprivation and the sleep deprivation and the anxiety and the contractions and the baby punching my cervix and yes, even the migraines. I'll take it all with a smile on my face when I can, because I want these babies so badly I can taste it. I love them already and I'm already terrified that I'm failing them as a parent by even thinking about the negative parts about this whole pregnancy thing.

The one thing that my children... all our children... will always know is that they were, above everything else... wanted. And THAT is what makes all this infertility bullshit worth it.

19 weeks, 6 days

In a lot of ways, this pregnancy has been a whirlwind, and in a lot of ways, time has stood still, refusing to move forward. I am very, very definitely pregnant, as every passerby seems determined to remind me, but it still doesn't feel even a little bit real, even as Baby A, the little brat, keeps punching me in my cervix. If you didn't know, that really, really, really hurts when they do that.

Pre-Natal Appointment
My ultrasound last week was also my first "prenatal" appointment with the perinatologist, which is to say, it's official. I'm OB-less. My records have all transferred over, my OB knows I won't be back until my post-partum checkup, I have only one set of doctors, and I am breathing a tremendous sigh of relief. I love my OB. I'm sad to leave his office and the comfort and safety net that I feel there, but I'm happy to have the comfort and safety net of having only one set of extraordinarily competent doctors to coordinate with. I'm very confident in the care I'll be receivig there, and that's what matters. S0 in addition to everything else, I got to meet with a nurse to fill out all the OB paperwork and background stuff... medications I'm taking, GYN history, surgical history, allergies, etc. Somehow I failed to mention that I'd had a D&C in October... whoops. But I did clear that up today. She was very nice and she gave me her card with her direct number and told me she doesn't mind if I call with dumb questions because she's always happy to tell me it's nothing to worry about... those are the easy calls.

White Coat Syndrome
I never really thought I get nervous in doctor's offices, but my blood pressure had started to worry me a bit as it's been consistently on the high side at my OB's office. While it was slightly lower at the perinatology office, it was still elevated. I have a history of low blood pressure, so I found this pretty shocking. So, we bought a sphygmomanometer for the house. My husband has very high blood pressure and needed one anyway, and he's got large arms and mine aren't tiny either, so part of my theory is that they were using the wrong sized cuff at the doctor's office. I was quite correct. My resting blood pressure at home is consistently fine, averaging about 110/65. My pulse, on the other hand, is through the roof no matter where I am, and no matter what I do to try to calm it down. I assume this is a normal side effect of pregnancy, what with the significantly increased blood volume and all, but I keep forgetting to ask my nurse about it and my google-fu is failing to completely soothe me (though a re-check with Dr. Google does seem to suggest an increase in pulse may be normal, I can't seem to find a RANGE of normal).

Ultrasound: Fetal Anatomy
The ultrasound also went well. My cervix is miraculously holding steady. The placenta previa is moving out of the way, though it's still not completely resolved. Baby A is right on top of my cervix, spending his or her spare time punching the living daylights out of my cervix. I'm not sure if I've mentioned this, but it HURTS LIKE THE DICKENS when he/she does that! They did the fetal anatomy on Baby A and Baby C (Dr. M did Baby B the previous week). I did not love the sonographer. She was pushy and was irritated that I was doing it "so early" (fetal anatomy is usually done around 20 weeks... I was 19 weeks, 1 day). She also was pissed off that the doctor had already done Baby B and only wanted Baby A done this week. The doctor had specifically NOT wanted me laying on my back for an hour and a half of torture for no good reason, when they could easily spread the appointments out. The sonographer said, "no, that's stupid. It's better to do them all at once and the moms never mind because they get to see their babies." Except, hello? I kind of minded! I was in pain. I had a pounding migraine. I was having contractions. My hips were killing me. My legs kept falling asleep. And she kept pushing down so hard I wanted to jump off the table!

That being said, she did an excellent job and showed me everything very clearly and answered all my questions and made sure I always knew exactly what she was measuring and why. Even if she DID keep referring to them as "my babies" (meaning hers, not mine, which is so not okay), she did do a great job. And she managed to not take a peak at any tell-tale signs of the babies' sexes, which is also good. So I can't entirely fault her. And besides, it might have just been pregnancy hormones, right? I continue to be astounded at the level of detail that can be seen with just a few concentrated soundwaves. Seriously, all my babies have kidneys and bladders and four chambers of their hearts and cerebellums and stomachs and how weird is that? They could tell that none have a cleft palate. They could see the blood flow through the heart. It's all just so unbelievably weird.

Movement and Pregnancy Symptoms
I do feel the babies moving, or at least Baby A. I think I might also feel Baby B, but Baby C doesn't move much, being all squished up in the corner. Baby a does so make his/her presence known though. Beyond that, I've got all the normal pregnancy symptoms. I'm still popping Zofran like candy so that I can keep food down. Except now I have a new nemesis to keeping food down: heartburn, and boy is it rotten! So now I'm also popping Tums and Zantac like they're candy. Yum! Oh and that mysterious thing called "round ligament pain"?? I always read about that in pregnancy books and thought, "yeah, right. Like I'll ever be able to distinguish that from all the other aches and pains I've got!" I admit it, I was wrong. Very, very wrong. Holy mother of um, frodo, this is very, very distinctive, unmistakeable pain! Oh, and I found out today that, shock of shocks, I have a UTI. So a week of antibiotics for me.

Uneventful is GOOD
Mostly, however, I'm having a pretty uneventful pregnancy, for which I am very grateful. I am still able to work, much to my shock. I am pretty restricted in other activity and my doctor's deal with me is that if I want to work that means that when I'm home I'm in bed or in the recliner doing nothing, which is torture, but better than being on full bedrest, as I'm sure Suzanne can attest to! I still haven't gained an ounce (I'm down somewhere between 15-17 pounds from my pre-pregnancy weight), but my doctor isn't worried. My wedding/engagement rings are loose when I'd figured that they'd be too tight to wear by now. As uncomfortable as I am, the babies are all growing exactly the way they're supposed to, they all have "textbook-perfect" anatomy scans, and I'm not in pre-term labor. What more could a girl ask for?

Some of your comments
1. Rachel Inbar noted that I haven't said much about my foster son, J, lately. I don't talk about him too much here, except in the abstract, because this blog is really about infertility and now pregnancy after infertility, but also because it is a public blog and I don't really want his mother tracking this blog down. But generically speaking, he'll be four in September and we'll have had him three years in October. He continues to astound us both with his ability to absorb the world around him and his ability to express love and compassion for the people in his life. He's very excited to be a soon-to-be-big-brother, and tells everyone who will listen "I'm going to be a big brother! My Eema* has free** babies in her belly!"

*"Eema" means mother in Hebrew. Other ways to transliterate the word include Ima, Ema, and um, probably some other ways. I personally prefer Ima, but I've found that with a non-Jewish audience, Eema is the most intuitive way, even if my Jewish readers look at it and think it looks odd.

**Free meaning three, of course.

2. I've gotten several new comments from two distinct categories of bloggers: bloggers who have just found out they are expecting triplets (all of whom are taking the news more gracefully than I did at first!), and bloggers who have their own triplets. This is exciting for me, as it seems that I now belong to TWO distinct blogging communities now... infertility bloggers and parents of triplets/multiples bloggers. I suppose this means I ought to split up my blog roll so that poor, unsuspecting infertility bloggers don't stumble upon something they didn't mean to. I'm a bit too busy at the moment to take care of that detail, but I'm TRYING to make a notation next to the blogger's name if it's a triplet/multiple blog. I hope that helps.

3. Suzanne asked where I get my google stats from. I answered her directly so I could get credit for Mel's Commentathon, but the rest of you may be interested as well. I use http://www.statcounter.com/ (there's also an icon in my sidebar that will take you there) because it's free and contains all the stats I want (primarily the keyword analysis). I got over 500 individual hits yesterday which astounds me. Seriously, I'm not that interesting, people!

4. I'm going to the DC-Metro area Get Together for Infertility Bloggers that's been arranged by LJ. Some of you may have seen some comments in my last post about this. Mel talked me into it, even though I'm an unbelievably shy person in real life with serious social anxiety about meeting up with a bunch of people I've never met. One-on-one? No problem. Eight at once? Good heavens, I wish valium weren't contraindicated in pregnancy. Mostly, I hope that no one is bothered by the pregnant chick at the table. I mean, I know I'm pregnant after infertility, so I'm not like a total leper or anything, but still. I could understand my presence making people uncomfortable. There's also the bit about the fact that I keep kosher, so I will be casually sipping a drink (nonalcoholic, bummer), which doesn't bother me a bit, but often makes others uncomfortable, but that's a whole different matter, which is just going to have to be someone else's problem and not mine. At any rate, despite all the anxiety, I'm really looking forward to it! You know, if I don't chicken out.

5. A couple people have asked me recently about my migraine status. I thought I was down to about 4 migraines a week, but when I looked back at my spreadsheet (yes, I really am that kind of anal... maybe THAT'S why I get migraines...) I'm actually at 5 per week on average. That being said, it's still an improvement over 6-7 per week. And about 2-3 per week are responding to Tylenol with Codeine, which is also an improvement. The Codeine doesn't resolve the migraine completely, but it takes the pain level down to a manageable level some of the time now, which is a huge, huge, huge improvement. I'm still definitely looking forward to the day when I'm not pregnant and I can up my Topamax dosage. Or maybe they'll let me do it sooner. That would be nice, even if it's unlikely. It's sad to say it, but 4-5 per week really IS a vast improvement, and it's good enough for me at the moment.

Um, there was a bunch of other stuff I wanted to write about, but it's all escaping me right now, and besides, this is long enough. Besides, I need to go looking for some Tums. Because they are like candy to me now. Only less satisfying.

Quick Neurologist Update

I don't have a lot of time because it's almost Shabbos (the Jewish Sabbath), but I did meet with the neurologist today. He had a fair bit to say, most of which boiled down to the fact that I have limited options. He agreed that even though migraines aren't life-threatening that the risk/benefit ratio still plays out that I need some kind of prophylactic treatment even during pregnancy. He acknowledged that my pain-relief options were limited, particularly since I've stopped responding to codeine (he said it's easy to build a quick tolerance to codeine). He did not like the idea of calcium channel blockers because they don't do me much good. He in particular said that nifedipine is a very not-good choice for migraine treatment. I didn't ask why.

Anyway, the long and the short of it is that he's recommended I take Topomax, which surprised me, but he said that the greatest risk with Topomax is neural tube defects in the first trimester. Since the neural tube has already been formed, this is no longer a risk. He put a call into my perinatologist, and in the meantime gave me samples and a script for Topomax, but said not to take it until I'd heard from them that it was okayed by the perinatologist. If the perinatologist didn't agree, they'd work out another option and he'd call it in for me. Much to my surprise, Dr. G said he was fine with me trying it.

Neither doctor wants me to get to a truly therapeutic dose while I'm pregnant, so the neurologist made sure to note that I'm not likely to have full relief. That's okay. If I get 20% relief until September, I'll be thrilled. After that, I can work on more complete relief. So I start it tonight. I took Topomax years ago with a fair bit of success (admittedly at a much higher dose). It wasn't perfect, which is why I changed, but in retrospect, the Depakote that I switched to was somewhat better but with far more unbearable side effects. So hopefully this will at least take the edge off.

A couple random migraine notes in response to comments:

I have tried both chiropractic care and accupuncture, with little success. Accupuncture in particular was not only not useful, it left me feeling worse than I started. Chiropractic care was fine for other reasons, but had little effect on my migraines. As for the vinegar trick... I've heard that one before, but have never tried it, because the smell of vinegar (except balsamic) makes me very ill. I imagine in pregnancy it would be far worse!

I totally get that this is an infertility/pregnancy blog, not a migraine blog, but frankly, it's hard to separate the migraines from everything else, because it is a constant state of my being. I have another perinatology appointment on Thursday, so maybe I'll have more interesting things to say then. :)

quickie post

I never know what to do with helpful comments that I can't respond directly to... when I have neither an email address nor a blog link to go by. Responding within the comments seems a bit useless, since blogger doesn't do threaded comments... and since I assume people aren't eagerly checking back in my comments to see if I've responded. This is why I do a lot of responding directly via email. But in this case, I received a good comment from Crystal that I'd like to respond to, so I'll do it here. She wrote:

I haven't read back in your archives yet, but I wanted to offer some suggestions on treating your migraines and nausea. Hopefully I'm not suggesting something you've tried already! I recently got desperate for a natural migraine treatment because I am breastfeeding. I found a tip on kellymom.com about snorting a few grains of cayenne pepper. Like I said, I was desperate and I figured it couldn't hurt. So I tried it and it actually helped! It left me with a dull headache, which was a whole lot better than a migraine!

A friend of mine recently got some wrist bands (called Sea Bands, I believe) that have a small ball that touches a pressure point to help with nausea. Up until she bought the bands, she had tried every other natural remedy and was still puking. So, that is something you could try. It can't hurt!

Kellymom, as usual, is right on with the suggestion to snort a few grains of cayenne pepper. The capsaicin dilates blood vessels. Since migraines are a vascular headache, this makes a lot of sense. In fact, one of the major migraine studies underway right now involves capsaicin treatment in nasal spray form. Frankly, I don't think it's necessary to run a study about this, as there are already capsaicin nasal sprays out there that work for a lot of people. See, for example, http://www.sinusbuster.us/products_hf.html One of their products is a nasal spray for headaches that includes capsaicin, peppermint oil, and feverfew. Peppermit oil also dilates the blood vessels and feverfew is a pretty popular herbal remedy for migraines (though I never found that it helped me). The problem for me, however, is that both capsaicin and peppermint are serious migraine triggers for me. And while it's known that the sinus buster product can actually exacerbate migraines for a few days but is supposed to improve over time, I find that it just causes me more intense migaines. I'm just lucky.

I've been getting migraines for almost thirty years (I'm 31 now). I am never, ever opposed to people suggesting remedies, even if I've tried them before, because some of the things that HAVE worked for me in the past have come from people who have said, "I'm sure you've already tried this and I'm sure you're tired of suggestions, but XYZ worked for my buddy." A lot of things work for me for a short time and then cease working. Other things work, but the side effects prove too great. Some things don't work the first time I try it, but work years later. So bring on the migraine suggestions. Yes, odds are good that I've tried it, but you never know.

As for the Sea Bands, that's a good suggestion. In fact, I've gotten them for other pregnant friends before, but haven't actually tried them myself this time. I get a bit weird about my nausea, because I KNOW it could be worse and hey... most pregnant women get nausea, so it's normal, right? And Zofran really does work, it's just that when I first wake up in the morning, the Zofran from the day before has worn off. The advantage to the wrist bands, of course, is that I could wear them overnight. See? Folks in the blogosphere are quite smart. :)

In other news, my Friday of migraine-free-ness did not result in a migraine-free Saturday, but I was better equipped to cope with it having had a day to recover a bit from the relentless pain I'd been in all week. I'm not greedy. I'll take one good day. It still gives me hope that I'll have more to come. And whatever it takes to get these babies to September... if it means a few more months of relentless migraines, I'll do it. Once they're born, I'll have more options for prophylactic treatment, so my real focus is on getting to September. (That being said, I'm still talking to the neurologist on Friday to see what options I've got right now).

Two Things

Thing One:
OhmygodOW! My head is killing me and the worst part is that lately when the pain gets really bad, I start to clench my teeth and then I get these shooting pains in my jaw, which probably make the migraine worse, and that makes me clench harder, which makes it hurt more, which makes the migraine worse, and ohmygodow!

I know that teeth clenching is sometimes a sign of anxiety, but I'm not feeling anxiety right now. I'm good. Really. I'm just in a whole lot of pain and I would like for it to stop now, please!

Thing Two:
If my calculations are correct, I should be able to go for my pre-provera lab work on December 14th. Assuming I'm not pregnant that day (HAH!), I'll start taking provera that day, finish December 24th, and start a new IUI cycle around the first of the year. Go me!

Gosh that seems very, very, very far away.

Game Over

Waffling continues. Or Continued. Decision made.

Yesterday I was 99% certain I would not do the clinical trial. My reasoning was simple: I knew that the likelihood was that in 6 months I'd probably get to the point where I couldn't take it anymore and I would drop out of the study. That's my right to do and they can't stop me. But it would be unethical of me to enter into the clinical trial KNOWING that the likelihood was that I wouldn't uphold my promise not to try to get pregnant for 12 months. To me, that would be like stealing. It's a $20,000 device that they're planning to implant in my heart at no charge to me. If I knew I'd end up voiding my ability to count in their data, I'd be stealing. So I was completely certain that I would get to the end of the headache diary month and tell them "sorry, but no."

And then I got a call from the study coordinator wanting to tentatively schedule a surgery date so that if/when I qualify it's already on the books. And what did I do? I scheduled a tentative surgery date. And I felt good about it. I knew I wanted to do the study. Maybe this was my sign that I should just do it and deal with the consequences later. After all, how often will an opportunity like this come about? And I really do want to do the study. It's a dream come true! I've been waiting for this study for years!

So I was right back to where I started. Not sure what to do. Continuing to waffle. I figured I'd just have to flip a coin at some point. But the proverbial coin has been flipped for me. Insurance coverage is rearing its ugly head.

I started a new job in May and when I changed jobs, I changed to a company based in Virginia. Virginia, unlike Maryland, has no mandated fertility coverage for insurance plans. And I had extremely good coverage under my old plan (and, in fact, if I hadn't gotten a 40% raise to change jobs, I might have just stayed at my old job for that very reason... I loved my old job!). Anyway, for that reason, I've been paying out of pocket for COBRA so that I can keep my old coverage. Problem is, of course, that COBRA is: 1) extremely expensive; and 2) limited time availability. A year from now, I will have to switch to my husband's insurance coverage. I asked him to look into fertility benefits and so I could figure out how that affected my outlook in a year if I choose to do the study. The results are in.

My husband's coverage, while not quite as robust as my current coverage, is quite good. He works for a major hospital in a major city, so this isn't shocking. However, I would have to go to the hospital system's fertility center in Baltimore, which isn't feasible. It isn't practically feasible, and it isn't financially feasible. And I'd probably have to change jobs to be able to be close enough to make it happen. More importantly, they haven't been around very long and their stats are terrible. Well, not so terrible, considering how few procedures they've done, but the point is, they're not as good as Shady Hell.

And that, my friends, is game, set, match. I am inflexible on this point. Since I won't have what I consider to be optimal insurance coverage for fertility treatment a year from now, the migraine study is no longer feasible. I don't love it, but I'm happy that the decision has been made on logical/practical grounds instead of the emotional grounds I was wrestling with.

Therefore, tomorrow I will stop being such a chicken and I will have my blood drawn to see if my hCG level has bottomed out. If it has, the clock starts ticking and in four weeks, I'll start Provera, and then I will start my next IUI cycle. If it doesn't work, I'm telling my doctor that we will switch to IVF. If she doesn't agree, I will change clinics. I'm tired of waiting. I now need to be agressive. And I feel really good not having these conflicting goals anymore. Now that I know which goal I'm aiming for, I'm good. And so, I am relieved.

Sad

Ever since I've heard about this migraine study (yes, I'm still obsessing), I've found myself much more sad about infertility-related things. I think I did a pretty good job of not wallowing in my infertility before (not that there's anything wrong with wallowing!). Yes, infertility is a part of my life, but so long as I was doing something about it, I didn't feel constantly sad about it. It just was.

Now, every time I think about the migraine study (all the time), I feel like I'm going to cry. Sometimes I do. And I'm not crying about the study... my gosh, it's a dream come true! But I think about 12 months off of fertility treatment and I just want to cry. It's just not fair that there's no possibility I'll have an "oops" during that time. If I got pregnant during the study, I couldn't pretend like it wasn't intentional. How can I promise I won't get pregnant for another 12 months? Nothing I'm signing says I won't get pregnant, but if I did get pregnant, my data would be excluded from the study findings, which would be like stealing, since they still would have gone through the expense of having a $23,000 device implanted in my heart.

So yeah.

I want to do the study. But I don't think I can. Which would I regret more: giving up a chance to minimize my migraines or giving up 12 months of trying to have a baby? I'm fairly certain I would regret the latter option more. It's not a pleasant choice to make, I'll tell you that.

Yes, I'm still obsessing. Yes, I expect to change my mind a few more times before I have to make a final decision. Yes, you can expect to see more neurotic posts about this. I do have other things to write about, but I just can't get this out of my head. Every time I start to write a post, I start writing about the study instead. So bear with me.

waffles

I like waffles. They are far superior to pancakes. I don't love waffling, however. And that's what I'm doing. I don't know what to do about this migraine study. Every day I seem to have a different opinion. I suspect I'll end up doing it, but every time I think about taking a year off fertility treatment, I start to cry.

I mean seriously, how could I NOT do this study? I've had migraines my entire life. And they suck. They suck so badly. I can't imagine my life without them. I have a feeling that without migraines my life would improve so dramatically in ways I can't even begin to project.

And yet... I would gladly suffer migraines forever in exchange for a baby.

This isn't even a choice between eliminating migraines or having a baby, though. It's conceivable (no pun intended) that I could have both... have the surgery, and a year later get pregnant. It could happen. It's also conceivable that neither would happen. I could have the surgery, still get migraines, and still never have a baby. I could also choose not to participate in the study, not have the surgery, still get the migraines, and still never haver a baby.

If I did the surgery, took a year off, and then in ten years still found myself barren, I know I will always wonder what would have happened if I hadn't taken that year off. If I don't do the surgery, and still don't manage to have a baby, I know I'll still have migraines. But will I regret the migraines as much as I would regret not trying for that year? Egads, this is hard.

I went in Friday for my initial screening appointment for the study. I swear, the study criteria was written FOR me. And they checked to make sure I have a PFO. I had a little performance anxiety, oddly enough. What if it wasn't there anymore? Yeah, um, spontaneous PFO closure doesn't happen. And anyway, it was there. The test was pretty cool, actually. When the PFO was originally discovered, it was visualized by doing a transesophogeal echocardiogram, which seriously... not so pleasant. Right. So what they did was put these sensors on my head... I guess they were like an ultrasound probe, only small and attached to my head. There was gel and everything (pretty yuck). They used the sensors to listen to/visualize my cranial artery. Then they injected a saline solution that had been agitated so it had lots of little bubbles into an IV line. Very shortly after the injection... snap, crackle, pop... all those little bubbles showed up in my cranial artery; a sure sign of a patent foramen ovale.

The funniest part of the whole thing was explaining to the doctor that before he attached the sensors to my head, I'd need to take off my wig. I don't talk about it much here, but I'm an Orthodox Jew. Orthodox Jewish women cover their hair after they are married. Some women wear hats, some wear tichels (scarves), some wear snoods, some wear wigs. I used to wear hats, but I found them cumbersome (not to mention I look ridiculous in hats). Snoods aren't professional. I couldn't keep scarves on. And I was tired of explaining myself to coworkers and clients. So I started wearing a sheitel (wig). Anyway, mostly people don't realize I'm wearing a wig, except for other Orthodox Jews who can spot a sheitel a million miles away, and it's not really something that comes up in conversation. When people find out about it, they kind of flip out. Anyway, I said to the doctor that before he put on the sensors, there was something I had to tell him, and it was going to freak him out a little, and that's okay. "I'm wearing a wig, and no I'm not sick, it's really weird, but Orthodox Jewish women cover their hair after they get married." The doctor didnt' even flinch. He didn't wince. He didn't have any of the normal reactions. He said, "okay, no problem. I didn't know that." When I told him some women wear hats, he remarked that come to think of it he has a neighbor who always wears a hat. I'm sure after I left he talked about what a freak I am, but kudos to him for not freaking out in front of me. :)

Right. Anyway. Back on topic. The study is a dream come true. The protocol was written for me. It's like someone has been following my life and taking notes and designed a study just for me. I'm 100% qualified and the only thing left is to do a month long headache diary on a palm pilot thingy they provided and that's just to get a baseline before

And yet... telling an infertile that she has to purposely not get pregnant for a year....? I'm starting to cry just thinking about it. So pardon me if for the next month I'm a little fixated on this stuff.

One interesting note: I had to take a pregnancy test at the appointment yesterday, and it came up negative. So maybe my hCG is bottomed out. It was a urine test, not a blood test, so I'm not sure, but I am definitely making progress.

Could it Be?

I'm having some pretty magnificent cramping right now. I am 4.5 weeks post-miscarriage. Could it be my body is actually doing what it's SUPPOSED to do? Could I be getting my period? I know this shouldn't sound like such a shock or anything, but in the last ten years, I'm pretty sure I can count on one hand the number of spontaneous, non-medically-induced, periods I've had. Maybe 10 years is an exaggeration, but it's been a good, long while. In fact, I don't think 10 years even IS an exaggeration.

I wonder if this is a sign that my hCG level is bottoming out. I've been too chicken to go get my blood levels checked, and I haven't even peed on any sticks recently to see if the level is high enough to set off an HPT. I've been putting off getting my hCG level straightened out because I wanted to see what I'm going to do about this migraine study. I've got my intake appointment with the study center this Friday. I'll have to go through a qualifying month keeping a headache diary on a PDA that they will provide for me, during which time I must also produce my medical records proving that I've tried (unsuccessfully) both Depakote and Inderal. This seems like a minor task, but I took Inderal 16 or 17 years ago, so coming up with those medical records has been interesting. (Thank heavens the hospital the neurologist was based out of keeps records for 25 years!)

At any rate, that qualification month gives me some time to figure out what to do. My close inspection of the study consent forms and specific information about the study that were sent to me has yielded an interesting result: nothing in any of the study-specific information or consents suggests that if I participate in the study I can't get pregnant. Furthermore, while it requires that I not change the medications that I take for treating migraines. It does not, however, require that I not change any of my other medications. Which implies to me that there's nothing stopping me from starting fertility treatment in a few months if I have the surgery (for three months after the surgery I have to take aspirin and Plavix, which makes it seem prudent not to mess with fertility drugs/treatment during that period).

I find this all fascinating. If it turns out to be true, I'd be insane not to do the study. If it turns out to be an oversight on their part... I'm just not sure I can put all this off for another year. Seriously. So we'll see.

Coming up if I ever get around to it: a post on anonymity in the blogosphere, or lack thereof.

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%. Inderal 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 of the 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.