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Archive for the ‘migraines’ Category

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. 🙂

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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. 🙂

Read Full Post »

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. 🙂

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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).

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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).

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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.

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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.

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Protected: Game Over

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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.

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