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balancing priorities - Karen's Musings
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estherchaya
estherchaya
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.

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Comments
hannahsarah From: hannahsarah Date: November 3rd, 2006 07:35 am (UTC) (Link)
I read and re-read your post very carefully.

It sounds to me like you should go ahead with the study and have the surgery. I have this theory, it goes something like this: stress causes migraines, migraines cause stress, stress effects hormones, hormones effect fertility. I think that if you had more pain free days, perhaps the level of stress hormones in you body would come down, and your fertility treatments would have a higher chance of succeeding. When you are in pain, your body is in "crisis mode" and you're secreting a lot of cortisol. When you are in crisis mode, your body is saying "Hey, this is NOT a safe time to have a baby - there's a crisis going on here!".

Another thing, the technology for the migraines is available to you right now, and maybe by next year the fertility technology will be improved enough to make a big difference for you. (Stem cell research could have some side benefits in improving the odds of IVF. You never know.)

Best of all, picture yourself as a calm, relaxed, pain free mother, as opposed to a migraine suffering mother. Take this from personal experience, migraines and colic at 4am do NOT mix well.

The chance to have this surgery could be a gift from shomayim. Go for it!
osewalrus From: osewalrus Date: November 3rd, 2006 02:31 pm (UTC) (Link)
I had similar thoughts before reading Hannahsharrah's excellent analysis.

And I will add one more thing. You need not make the decision yet. You need to see how this month goes on migranes.

May I suggest you not make any decision at all until you know how this month goes on migranes? It would be awful to torture yourself (possibly inducing more migranes due to stress), decide that you want the surgery, get psyched for it, then discover that you had 20 migranes in November and can't qualify.

You should, of course, take the necessary steps (if any) to get signed up so that if you do qualify, you are not precluded. But that doesn't mean making the ultimate decision now. You can chew that over for a month.
estherchaya From: estherchaya Date: November 3rd, 2006 03:56 pm (UTC) (Link)
I am definitely not making any decisions now. I just know that I need to keep mulling over these issues during that trial month, because then I'll have to make a decision pretty quickly. I don't think there's a right answer, nor a wrong answer.

I also know that if I want it badly enough, I can manipulate my migraine frequency... if I am extraordinarily careful not to eat ANY trigger-foods, I can probably take several migraines out per month. Mostly, it's not worth doing that, because it would mean an extremely restricted diet (no dairy, no nuts, no soy, no MSG, no strawberries, no canteloupe, no chocolate, no wine, no alcohol in general, no pepper... the list goes on and on and on). But for the purposes of qualifying for the study? Yeah maybe.

You should know that even considering the study was a huge step for me. When I first found out (a few days ago) that the studies were starting up and now recruiting patients, I dismissed it entirely. The only reason I even filled out a pre-qualifying questionairre was because I wanted to talk to a center to ask some questions because of my natural nosy-ness. It was only after confirming that indeed, I am the PERFECT patient for this, and finding out that if I got in RIGHT NOW I wouldn't be randomized that I started to even consider it. Without that possibility of not being randomized, taking a year off the pregnancy gig would be absolutely unacceptable to me.
estherchaya From: estherchaya Date: November 3rd, 2006 03:38 pm (UTC) (Link)
I don't think there's any wrong decision here. I also don't think there's any completely right decision either. I've had migraines for almost three decades. I function very well with them, considering. Still, I'd love to be pain free for a solid week.

(incidentally, while my migraines certainly cause physical stress, very few of my migraines are stress induced... I have very careful notes in my headache diaries and have very specific non-stress related triggers)

I don't have any idea what parenting without migraines would be like. For that matter, I don't know what cooking without migraines would be like, what waking up without migraines would be like, what walking without migraines would be like, what really anything without migraines would be like.

The bottom line is, I definitely have a line in the sand. My priority is having a baby. If I knew I would get pregnant a year after this device was put into my heart, there'd be little question in my mind what to do. But if having migraines for the rest of my life is the price I pay for getting pregnant and having a baby? I'll pay that price again and again. Still... life without migraines? Or with fewer of them? Man, that's awesome to think about.

Like I said... no wrong decision here, but no clear-cut right one either. No matter which I choose, it's a big "what if" afterward.
(Deleted comment)
estherchaya From: estherchaya Date: November 3rd, 2006 03:57 pm (UTC) (Link)
that's interesting. Why did she have it closed? How did her life change? Do you think she'd mind me talking to her? I don't personally know anyone else who's had their PFO closed.
(Deleted comment)
estherchaya From: estherchaya Date: November 5th, 2006 04:05 pm (UTC) (Link)
Thanks, I wrote an email to her.
arosoff From: arosoff Date: November 3rd, 2006 10:07 am (UTC) (Link)
Ow. I get migraines (though nowhere near as bad as yours) so I have an idea of how tempting this must be. And I know just how crappy Depakote is because I was on it. (I'm still angry that I spent 4 years on it for so little benefit. Not to mention that maybe it triggers PCOS in sensitive women and it does a permanent job on your metabolism.)

But I also know that wanting to get pregnant is not something you can just drop, even if it's "only" for a year. So... argh. I _think_ I'd have the surgery, because who knows when you'd be able to get it otherwise, it might be 5 or 10 years. But, having done so much to try to get pregnant already, it must be really impossible.

That wasn't very helpful!! But here's a bucketload of sympathy anyway...
estherchaya From: estherchaya Date: November 3rd, 2006 05:14 pm (UTC) (Link)
Your comment is extremely helpful. I know there are a lot of people who DON'T understand why this is even a question for me. It's nice to see that you get it.

If the studies are successful, it would probably be a minimum of 10 years before I could get the surgery, and there's no telling if insurance would be paying for it by then.

But yeah, turning off the "I want to get pregant" impulse just doesn't happen. As it is, the last three weeks have been agonizing knowing I'm sitting here doing nothing with no ability to jump back into fertility treatment until at least the end of december. Can I handle a year of that, just so I can stop having so much pain?

ailsaek From: ailsaek Date: November 3rd, 2006 11:51 am (UTC) (Link)
Sympathy. Lots & lots of sympathy. I know which I'd choose, but I've given up on ever getting pregnant again, and I'll be 43 in a little over two weeks. I'm not even going to try to advise you, just acknowlege that you're in a heck of a hard position.
estherchaya From: estherchaya Date: November 3rd, 2006 05:17 pm (UTC) (Link)
You've also been pregnant before. (well, technically so have I, but it doesn't count in quite the same way). I'm not sure, but I think I'd feel differently if I'd been pregnant (and stayed that way) already. I don't think secondary infertility is any easier than primary infertility, but I do think this PARTICULAR decision would be easier for me to make.

My gut keeps telling me this is an easy choice to make. It's just that my gut keeps changing its mind about which choice is the obvious one. ;)
archgirl06 From: archgirl06 Date: November 3rd, 2006 12:21 pm (UTC) (Link)
When I get my migraines with aura I freak out. I lose feeling in different parts of my body (last time it was my left cheek, my left hand and my tongue -- yeah strange). Another time, I drove myself to the ER cause I couldn't swallow cause my entire mouth went numb and I had spots in my vision (they yelled at me).

If you are OK with having heart surgery, I would try to get more information about it. Personally, I would rather be in pain than risk heart surgery, but then again, I don't particularly trust or like doctors (and I don't get them as near as often or severe as you, and I have a running supply of vicodin "thanks" to my chronic pain condition thing).

Take one step at a time, if you qualify, then you can worry about the next step (this is coming from a person that worries throughout the entire process, so... =p)

Hope your pain is relieved soon.
(Don't mind me if this makes no sense or is incredibly rambly. It is 7am and I have not yet had my coffee)
estherchaya From: estherchaya Date: November 3rd, 2006 05:27 pm (UTC) (Link)
Almost all of my migraines come with an aura. There are very few that don't for me. I don't love it. On the other hand, the Egyptians thought people with migraines had psychic abilities. Maybe I'm just special. Probably if I'd lived in Salem in the wrong century, I'd have been burned as a witch.

Heart surgery is actually a bit of a bad term. It's cardiac catheterization, which is really common and really not a big deal anymore these days. I call it heart surgery, though, precisely because it DOES freak me out. I mean, this is people MUCKING WITH MY HEART, for crying out loud. I don't care how common it is, this is MY HEART. Still, it's about a 30 minute procedure, one night in the hospital, and back to normal activity in three to four days. All in all, not terribly traumatic.

But I've had migraines all my life. I know how they feel. I know what to expect. I don't know what to expect from having a CATHETER IN MY HEART.

Anyway, I'll see if I qualify. Looking back at my headache records, I'm betting I will qualify. And then it's going to really suck making decisions.
caryabend From: caryabend Date: November 3rd, 2006 07:13 pm (UTC) (Link)
My dad had a cardiac catheterization, if you'd like to talk to him.
yeishlitikvah From: yeishlitikvah Date: November 5th, 2006 03:31 am (UTC) (Link)
grr i forget sometimes what good company I am in :)

I so relate to the migraines with auras and numbness and then saying f-it and driving with a full-blown migraine bcuz in that fog it makes sense

your lucky to have pain meds for the chronic pain- my doctors have treated me like an addict looking for a fix, ps I was ok until the meds that worked were pulled off the market.

hugs to both of you
magid From: magid Date: November 3rd, 2006 01:11 pm (UTC) (Link)
What a choice...

I think that Hannahsarah's logic has some merit to it, and if you think you'd need to be in a study to afford the surgery, it's obviously better to have a guarranteed non-placebo, but I'm not in your shoes...

*hopes things become clearer over the month of the requisite headache diary*
estherchaya From: estherchaya Date: November 5th, 2006 03:58 pm (UTC) (Link)
yeah, it's a sucky choice, but I'm glad to HAVE choices.

It's not a matter of needing the study to afford the surgery... it's that even if I could afford it, IF the study is successful, odds are good that it will be a minimum of 10 years before it's fully approved and available. Still, like I said, if I could guarantee that I'd get pregnant (and stay that way) this year, I'd give up the study in a heartbeat. Having a baby is a bigger priority for me than being migraine free.

I'm leaning toward doing the study if I fully qualify, which I likely will, but I'm waiting on a few pieces of information first.
mabfan From: mabfan Date: November 3rd, 2006 01:58 pm (UTC) (Link)
I don't know if I'm qualified (on any level) to give you advice on such a difficult decision, but as for myself, if I were in your position I would go with the study and the surgery.

You do have our support as you work out for yourself what you want to do.
estherchaya From: estherchaya Date: November 5th, 2006 03:59 pm (UTC) (Link)
Thanks. That's where I'm leaning for the moment, but there's a clear and convincing argument on both sides. This is why I'm bad at decision making... I can always clearly see (and empathize with) all sides of arguments. Le Sigh.
From: have_inner_lady Date: November 3rd, 2006 02:10 pm (UTC) (Link)
What a terribly emotional decision to have to make. I suppose you could let it come down to the math: Based on preliminary studies, are you more likely to get significant migraine relief from the device, or are you more like to get pregnant in the next 12 months?

Because if migraine relief is more likely, that might be a good idea. For all we know, maybe having migraines is deleterious to pregnancy. They sound like a horrific physical stress.
estherchaya From: estherchaya Date: November 5th, 2006 04:03 pm (UTC) (Link)
The odds come down about equally on both sides... If I get the device I'm highly likely to get significant (if not total) migraine relief, but I'm also highly likley to get pregnant in the next 12 months.

There's been no link shown between migraines and pregnancy/miscarriage rates. Certainly pregnancy would probably be more pleasant without migraines. But interestingly, migraines are often relieved during pregnancy as a result of the natural hormone production. That relief doesn't tend to come until the 2nd and 3rd trimester and since I barely made it to the second trimester, I don't know if I would have had that benefit.
From: have_inner_lady Date: November 5th, 2006 06:28 pm (UTC) (Link)
Yikes, what a pickle. Whatever you choose, I hope you get long-term peace of mind from it. I'm wishing for you to have both in the next few years.

Also, thank you for always being so generous with your explanations of such sensitive matters.
estherchaya From: estherchaya Date: November 5th, 2006 08:02 pm (UTC) (Link)
I spent a long time being very quiet about infertility stuff. I was embarrassed by it. But I also was annoyed when people were insensitive about it. Eventually I realized that people can't be sensitive about something they don't understand. Normal humans don't know how to relate to the pain of infertility. Infertility sucks no matter where on the spectrum you are. If a woman decides she wants to get pregnant one day and three months later she's not pregnant, that's devastating for her, even though she's not technically classified as infertile until, god forbid, she's been trying for a year without success. At the three month mark for me, I wasn't devastated, but that's because I went into it knowing that I was likely to have fertility issues. I wasn't concerned. Four years later, I've had enough failures to know that this isn't any fun at all.

That said, if people ask me honest, respectful questions, I will always give as thorough an answer as I have available. I think we infertiles do ourselves a disservice when we stay "in the closet". That's one of the reasons that very few of my general infertility posts are locked anymore (though my early pregnancy posts were tightly locked to people I don't actually know in real life) Mostly, I've decided not to be so sensitive about these matters anymore. If I censor myself, it's mostly out of respect for other people's comfort levels, not my own.

Anywho it is a bit of a pickle, but as I learn more, I'm leaning a bit more toward the study for the moment. Except when I'm not. Hah!
ichur72 From: ichur72 Date: November 3rd, 2006 02:21 pm (UTC) (Link)
No advice, but sympathy. This is a very hard choice to be facing.

I did not know about the PFO connection. I'll have to ask Walt whether he's ever had an ECG and if so what the results were. The idea of him having heart surgery is terrifying, but if he could escape the migraines ...
estherchaya From: estherchaya Date: November 5th, 2006 04:08 pm (UTC) (Link)
PFO wouldn't show up on a regular ECG. It would have to be a "bubble study".

The truth is, he could apply for the study, because the first step of the study is they do a bubble study to see if you have a PFO. Most people don't know already that they have a PFO. I'm unusual in that regard.

The heart surgery to repair the PFO is not scary. It's done via cardiac catheterization, which is incredibly common these days. It's a 30 minute procedure with an overnight stay in the hospital and back to regular activity within 3 to 4 days.

Here's the study information page: http://www.escapemigraine.com/
ichur72 From: ichur72 Date: November 5th, 2006 07:27 pm (UTC) (Link)
Thanks for the extra info. It looks like he wouldn't be eligible anyway b/c he has had decent results with Topamax as a preventative. (He still gets migraines, just not as many, not as bad and not as long-lasting.)
estherchaya From: estherchaya Date: November 5th, 2006 07:45 pm (UTC) (Link)
If he still gets more than four migraines per month, he's still eligible.

Topomax worked fairly well for me, but not well enough and the side effects were intolerable. The best thing about Topomax, though, was that a common side effect is weight loss.
From: gingy Date: November 3rd, 2006 02:37 pm (UTC) (Link)
You have a year wherein you could be struggling with your fertility and still not get pregnant; you may in fact never be able to conceive and carry a baby to term. With this surgery, it will improve the rest of your life (not saying that a child won't also do that). Imagine what your life would be without migraines!
(Deleted comment)
estherchaya From: estherchaya Date: November 5th, 2006 04:10 pm (UTC) (Link)
I can't imagine what my life would be without migraines. I've never been without them. It really is THAT abstract for me. I have absolutely NO idea what it would be like to not have them.
From: gingy Date: November 5th, 2006 07:26 pm (UTC) (Link)
I think, then, this is the perfect way to find out what 'normal' is.

Of course, I'm not nearly as emotionally invested in your fertility as you and your husband are - but to my outsider's point of view, this will change your quality of life so dramatically, and there is still the chance that you may not be able to conceive and carry to term. I wish I could say "GO GO OVARIES! WOOT UTERUS!" and make it the truth, but that isn't going to happen.

(Although, I will actually say that if you would like me to.)
estherchaya From: estherchaya Date: November 5th, 2006 07:48 pm (UTC) (Link)
The odds are extremely high that I will be able to conceive and carry to term. The miscarriage was not likely the result of a uterine abnormality (all that had been checked), I obviously don't have implantation or fertilization issues, and Seth and I have been screened pretty heavily to make sure we're not carriers for many of the most likely genetic disorders that we could be predisposed to (I, in fact, had a full karyotype run because of my mother's history of miscarriages). The odds of me being able to get pregnant and carry a baby to term in the next year are extremely high.

If I had a clearcut choice that went like this: 1. have a baby or 2. live migraine free.. I would choose the baby every time.
From: gingy Date: November 5th, 2006 08:00 pm (UTC) (Link)
You can have both. You aren't even 30 yet.
estherchaya From: estherchaya Date: November 6th, 2006 03:00 am (UTC) (Link)
I'm almost 31, and we've been trying for four years.
From: cecerose Date: November 3rd, 2006 04:05 pm (UTC) (Link)
Well, I don't envy you -- it's a hard choice.

I hear what some people are saying about the pain/stress/hormone connection, but in the final analysis it's really not clear how strong that connection is -- particularly given that you've suffered from migraines for so long and your body has adjusted in some way or other.

Given how important getting pregnant and having a child is to you, I'd probably forgo the study for now. Because you're right, the older you get the harder it will be to conceive. And new studies and technologies will continue to come to market in the future.

But that's just my take. In the final analysis I don't think there is a right or wrong choice in this particular case.

estherchaya From: estherchaya Date: November 3rd, 2006 05:51 pm (UTC) (Link)
I hear what some people are saying about the pain/stress/hormone connection, but in the final analysis it's really not clear how strong that connection is -- particularly given that you've suffered from migraines for so long and your body has adjusted in some way or other.

Bingo! That's exactly it. This sucks. Seriously.
yeishlitikvah From: yeishlitikvah Date: November 3rd, 2006 05:35 pm (UTC) (Link)
hugs i was only able top read thru 2/3 of yr post

but as a migraine sufferer and someone with chronic pain

i know that it kicks yr butt

good luck figuring out your options

and have a good shabbos
mrn613 From: mrn613 Date: November 3rd, 2006 09:15 pm (UTC) (Link)
REally, I don't know how you're functioning like you are, especially working full time and driving! I'd go for it. Both of my parents have had cardiac caths and they pretty easy procedures. They've changed the way they heal your puncture, by the way. It is much easier now.
estherchaya From: estherchaya Date: November 4th, 2006 11:25 pm (UTC) (Link)
You'd go for it even after four years of infertility and having just had a miscarriage? Honestly, I think the miscarriage is the only thing allowing me to consider the migraine study at all. At least I've seen that I CAN get pregnant. If I hadn't seen that, I'm not sure I could live with losing all that tme and inertia.

I just don't know. Every time I think about the migraine study I think "Of course! It's clear! You must do this!" But then when I think about the fertility factors, I think, "Of course! It's clear! You can't take a year off of trying!" It seems so clear for a few minutes. One minute I'm explaining the study to someone and I realize that of course I'm being silly and I'm going to do the study if I qualify, and then when I'm explaining to them why the fertility factors get in the way, I know I'm being ridiculous for even thinking about doing the study.

I am completely at a loss. Either choice I make, I'm going to wonder forever, "what if I'd made the other choice?"
mrn613 From: mrn613 Date: November 5th, 2006 01:11 pm (UTC) (Link)
I'm going to be completely honest and I hope you're not offended. It's easy to be honest over the internet, and I think most people have abandoned this thread already, so the conversation will be a little more private.

I think that all of these meds and the weight gain from the meds are interfering with your ability to conceive. They are definitely exacerbating your PCOS (look how easily you hyperstim). And, I don't think your chances of successful IUI justify the amount of time it takes to do them. If I were you, I rather be off of these powerful meds if possible and then do an IVF when I am in much bettter health. In other words, I would much rather do ONE successful IVF cycle in a year's time, than start right now wait a couple of months for beta to go to zero, thenhave a lab closure, then do ANOTHER four IUI's, then sit out a month, then do a down-reg month, etc.

I have been in the situation you are in, somewhat (since I was secondary not primary infertility). In June 2004 I had a spontaneous pregnancy, then miscarriage. It took two and a half months for my beta to go to zero, then I tried two FET's (three day six blasts transfered each time), then a hysteroscopy to see why they failed, and then had to decide what to do: either continue doing FET's with whatever sorry embryos I had in the freezer, or straight to a fresh IVF in the post-surgery month where my fertility would be at its peak. So it took seven months from where you are at now, until I did the cycle (eight months until beta).

Now I have the same decision all over again. If I want to have another child, do I keep shelpping into the clinic ever other day for a months, to do FET cycles with only a 15%-20% chance of success? Or should I just do another fresh cycle in six months or a year's time? At my clinic, they estimate I would have to do 6 frozen cycles to equal my chances at one IVF. Or I can do some sort of compromise, where I do a defrost all cycle and waste a whole bunch of embryos just to empty the freezer. I just can't bring myself to defrost all at this point even though that is what my doctor and rabbi would prefer that I do.
estherchaya From: estherchaya Date: November 5th, 2006 04:47 pm (UTC) (Link)
I am not offended, and I do understand your perspective. Just to clarify, however, I've been OFF Depakote for about 18 months. Just being off depakote does not equal weight loss. I've worked with my doctor to try to find ways to lose weight through diet and exercise and she said, "sometimes it's good to accept that you're at least maintaining your weight instead of gaining." I agree with her to an extent. I can't reduce my calorie content anymore than I have (I tend, in fact, to not eat ENOUGH calories each day).

I fully agree with you that doing an IVF cycle with the higher odds is far preferable than another 4 IUI cycles.

It is doubtful that having this surgery will affect my fertility outlook either positively or negatively, but it clearly has the potential to improve my overall quality of life.

Also, as regards me hyperstimming... I don't actually know how easily I overstim. Because of the PCOS, my doctor has been extremely cautious, just as standard practice, so I've only taken teeney weeney doses. It's possible that at double the dose I'd still be fine.

At any rate, I'm leaning towards doing the study if I qualify. But I know if my choice were as clear cut as: either 1. have a baby or 2. be migraine free, I would pick having a baby every time. The problem is that the choice isn't that clear cut. Because I don't know that the result of either choice will be baby vs. migraine free. It's really 1. surgery vs. 2. fertility treatment, either of which could be unsuccessful.
From: (Anonymous) Date: November 6th, 2006 04:23 am (UTC) (Link)
The odds come down about equally on both sides... If I get the device I'm highly likely to get significant (if not total) migraine relief, but I'm also highly likley to get pregnant in the next 12 months.

The odds might be about equal in favor of either, but what about against delaying either? How large of a difference does delaying reproduction attempts by a year make in your chances of successful pregnancy, and how does that weigh against the estimated ten-year wait plus finances for the procedure and relief it very likely would provide?

If I had a clearcut choice that went like this: 1. have a baby or 2. live migraine free.. I would choose the baby every time.

If it were that clearcut, of course you'd give up living free of migraines for a baby. Putting off the babymaking for a year in order to get migraine relief doesn't negate that hypothetical choice, doesn't mean you want a baby any less.

Either choice I make, I'm going to wonder forever, "what if I'd made the other choice?"

It is indeed a tough decision. If you have the cardiac procedure and never have a baby, you'll wonder what could have been had you not taken the year off. If you don't get the device and you don't become pregnant within the year, you'll be upset for having lost the chance for migraine relief. Even if you do forego the surgery and have a successful pregnancy within the year, you'll wonder whether you could have participated in the study and still have had a baby. Only if you take part in the trial and then go on to have a successful pregnancy would you not second guess your choice. Do you make the decision in such a way as to avoid the worst grief or as to try for the best outcome?


(Hi. We don't know each other, but I've been following your story since the unfortunate miscarriage. I offer my condolences on your losses and struggles. Your writing is terrific, as is your attitude.)

estherchaya From: estherchaya Date: November 6th, 2006 05:02 pm (UTC) (Link)
Thank you for your thoughts, and your amazing compliment as well. If you've been following my blog anonymously, probably you haven't seen most of my posts, as I friends-lock a lot of them. If you're following it specifically because of the infertility link, I have a specific infertility-related blog on blogger. A lot of the posts are identical, but some are specific to blogger. Anywho, just thought I'd let you know.

If you've been following my blog since the miscarriage because you, too, have experienced infertility and/or miscarriage, then you have my sincerest sympathies.
mysticchyna From: mysticchyna Date: November 10th, 2006 07:21 am (UTC) (Link)
very interesting medical entry. i'm so lucky in that i narry get a headache, but i know many on my list suffer from migranes, i can't imagine the pain.
i wish you luck in whatever you decide.
estherchaya From: estherchaya Date: November 13th, 2006 02:07 pm (UTC) (Link)
Thanks. I honestly can't imagine life without headaches. I've just never had a prolonged period without them. Still, if that's the price I have to pay to have the happy life I've got, I'll gladly pay it. I have no idea what I'm going to do about this. I have about a month to decide.
From: (Anonymous) Date: February 14th, 2007 01:27 am (UTC) (Link)

What happened?

It's been about 3 months since your last post on this topic. I just wanted to know what happened?

I had the PFO surgery and haven't taken any of my medication since. It's been 11 days... I haven't seen 11 days migraine-free in a few years. I, too, have had horrid migraines since early childhood. I've tried everything (as you have) and finally turned to the PFO closure. I was also having other heart-related issues, so they thought it would be a good idea. I had mine done at Duke Hospital and the experience was fabulous. Obviously, it was scary having anything done to my heart, but now that its over, I'm looking forward to seeing if my quality of life improves. Despite my pessimism, my doc is optimistic. Here's hoping...
estherchaya From: estherchaya Date: February 14th, 2007 02:10 am (UTC) (Link)

Re: What happened?

I posted a note on December 15th that I did not qualify for the PFO study, but it was buried in a general update post. At any rate, in order to qualify for the study, I needed to have 14 migraine-free days in a thirty day period. I didn't even come close that month. It was a decidedly bad month migraine-wise. Oh well. Maybe some day it will be available as a therapy after these studies are completed. I figure in another 15-20 years it will be approved and maybe even covered by insurance. Oh well.
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