Hormone Help: PCOS vs Migraines
July 20, 2012 12:22 PM Subscribe
In the Red Corner, we have PCOS, a three-time champion with Special Ruptured-Cyst Attack! In the Blue Corner, we have Possibly-Hormonal Migraines, defending the title and famous as the inventor of the Icepick-To-The-Brain Technique! The winner takes home the grand prize: the right to determine whether I stay on contraceptive hormones or not. Aaaaaaand... FIGHT!
I have PCOS. I discovered this when I was 18, the first time I ruptured a cyst; it was one of the most painful things I'd experienced at that point, and it's happened several times since. During the diagnostic ultrasound after the first rupture, they stopped counting when they got to 45 follicular cysts on each ovary, so left unchecked I'm a veritable cyst factory. I'm on hormonal birth-control pills to suppress ovulation.
I also get migraines; no food triggers, so the doctors say they're probably caused by weather/barometric pressure, hormones (I know PCOS can itself cause migraines), or stress (including throwing my neck out as I sleep). My first winter in the city I've moved to was pure hell - from the migraine that lasted four weeks straight from Thanksgiving, to a month with only five days free of migraine symptoms.
I finally found a triptan that works for me, which is great, but none of the preventatives I've tried have been successful. If we can't find a way of preventing the migraines, we may have to look at moving elsewhere, despite my partner's dream job being here.
In desperately trying to find something that worked for the migraines, I've talked to a bunch of traditional and alternative health practitioners. While compiling info for them, I realised that the migraines started the same year I started the contraceptive pills. Correlation may not be causation, but with people constantly implicating "hormones" in the migraines, it seemed worth mentioning.
Having put this to the healthcare team, several of them want me off the hormones, to see if that's a factor in the migraines. Lots of threads here suggest that would be worth trying; migraines are a known side-effect of the Pill. However, when I remind the doctors that the hormones are all that stand between me and more ovarian cysts, they're stumped. No-one yet has been able to suggest a non-hormonal way of suppressing ovulation.
I'd consider an ovariectomy/ovariohysterectomy since I don't want children, but my hormones are already borked; removal of the ovaries carries serious risks in that regard. I doubt I'd be able to find someone willing to do it anyway, for this reason.
I haven't talked to an endocrinologist or a gynaecologist yet (that's next, when I get back from a trip to my Former City), but I'd love to know of any possibilities that I can ask them about. So does anyone know of a viable solution, or am I stuck between a non-ovulatory rock and a horribly headachy hard place?
I have PCOS. I discovered this when I was 18, the first time I ruptured a cyst; it was one of the most painful things I'd experienced at that point, and it's happened several times since. During the diagnostic ultrasound after the first rupture, they stopped counting when they got to 45 follicular cysts on each ovary, so left unchecked I'm a veritable cyst factory. I'm on hormonal birth-control pills to suppress ovulation.
I also get migraines; no food triggers, so the doctors say they're probably caused by weather/barometric pressure, hormones (I know PCOS can itself cause migraines), or stress (including throwing my neck out as I sleep). My first winter in the city I've moved to was pure hell - from the migraine that lasted four weeks straight from Thanksgiving, to a month with only five days free of migraine symptoms.
I finally found a triptan that works for me, which is great, but none of the preventatives I've tried have been successful. If we can't find a way of preventing the migraines, we may have to look at moving elsewhere, despite my partner's dream job being here.
In desperately trying to find something that worked for the migraines, I've talked to a bunch of traditional and alternative health practitioners. While compiling info for them, I realised that the migraines started the same year I started the contraceptive pills. Correlation may not be causation, but with people constantly implicating "hormones" in the migraines, it seemed worth mentioning.
Having put this to the healthcare team, several of them want me off the hormones, to see if that's a factor in the migraines. Lots of threads here suggest that would be worth trying; migraines are a known side-effect of the Pill. However, when I remind the doctors that the hormones are all that stand between me and more ovarian cysts, they're stumped. No-one yet has been able to suggest a non-hormonal way of suppressing ovulation.
I'd consider an ovariectomy/ovariohysterectomy since I don't want children, but my hormones are already borked; removal of the ovaries carries serious risks in that regard. I doubt I'd be able to find someone willing to do it anyway, for this reason.
I haven't talked to an endocrinologist or a gynaecologist yet (that's next, when I get back from a trip to my Former City), but I'd love to know of any possibilities that I can ask them about. So does anyone know of a viable solution, or am I stuck between a non-ovulatory rock and a horribly headachy hard place?
Which kinda pill are you on? If it's one of the old-school combo (estrogen/progesterone) dealies, you might want to try at least one of the new lower-dose, single-hormone mini-pills... OR perhaps a Mirena IUD (which releases the teeeeniest little bit of hormones, but which DOES work so effectively that most women who use it stop getting a period).
posted by julthumbscrew at 12:40 PM on July 20, 2012
posted by julthumbscrew at 12:40 PM on July 20, 2012
IANAD/N/NP/medical professional of any kind; I am a lady with PCOS.
How long have you been on the pill? I've been cycling on and off of it for seven years or so, and every couple of years I quit the pill for a few months to see what happens (sometimes with doctor consultation/supervision, sometimes not). Finally, this year I have periods off the pill! Would you consider stopping the pill as a test? Maybe your PCOS symptoms will have changed since the last time you were pill-free. Of course, if your cysts are really bad, this would be something to do in close contact with your doctor.
If not that, have you tried switching pills yet? I know a lot of women have very different side effects with different pills. Or you could also explore other hormonal contraceptive options to see if that makes a difference--the Mirena IUD has hormones, and I've heard that a lot of people with pill side effect problems do well with the Mirena, but I don't know if it actually inhibits ovulation or not? Doctors have definitely suggested it to me as a PCOS option.
posted by snorkmaiden at 12:46 PM on July 20, 2012
How long have you been on the pill? I've been cycling on and off of it for seven years or so, and every couple of years I quit the pill for a few months to see what happens (sometimes with doctor consultation/supervision, sometimes not). Finally, this year I have periods off the pill! Would you consider stopping the pill as a test? Maybe your PCOS symptoms will have changed since the last time you were pill-free. Of course, if your cysts are really bad, this would be something to do in close contact with your doctor.
If not that, have you tried switching pills yet? I know a lot of women have very different side effects with different pills. Or you could also explore other hormonal contraceptive options to see if that makes a difference--the Mirena IUD has hormones, and I've heard that a lot of people with pill side effect problems do well with the Mirena, but I don't know if it actually inhibits ovulation or not? Doctors have definitely suggested it to me as a PCOS option.
posted by snorkmaiden at 12:46 PM on July 20, 2012
Response by poster: Ah, that would've been useful info, wouldn't it? I'm on a combo pill, indeed - 0.15 mg of levonorgestrel & 0.03 mg of ethinyl estradiol.
I've tried a few others, including some of the anti-androgenic ones (Diane, Yasmin, etc), but they made no discernable difference, so I went back to the simple sort.
I also did try Implanon, which is progestin-only, for a couple of years. However, the side effects were intolerable (bleeding for FIVE MONTHS STRAIGHT. OMGWTFBBQ.), so we pulled it out early and I went back to the pills.
Thanks for the question, julthumbscrew.
posted by Someone Else's Story at 12:52 PM on July 20, 2012
I've tried a few others, including some of the anti-androgenic ones (Diane, Yasmin, etc), but they made no discernable difference, so I went back to the simple sort.
I also did try Implanon, which is progestin-only, for a couple of years. However, the side effects were intolerable (bleeding for FIVE MONTHS STRAIGHT. OMGWTFBBQ.), so we pulled it out early and I went back to the pills.
Thanks for the question, julthumbscrew.
posted by Someone Else's Story at 12:52 PM on July 20, 2012
So you still got migraines on Implanon? It is my understanding that it's only the estrogen in combination birth control pills that's linked to migraines. The mini-pill (progestin only) is recommended for women who get migraines. But if you've already tried something without estrogen and that didn't help, switching up your birth control more might not be a fruitful path to follow.
posted by needs more cowbell at 1:30 PM on July 20, 2012
posted by needs more cowbell at 1:30 PM on July 20, 2012
I have PCOS, and Mirena + metformin + weight loss has been very effective for reducing my symptoms and cysts.
I did have hormonal headaches (I'm certain they weren't migraines as I wouldn't classify them as debilitating, although they were very painful) on Yasmin, but have not had any since Mirena was put in.
If you're not seeing an endocrinologist for your PCOS, I would highly suggest that you do. My understanding is that migraine is a very common co-morbid for women with PCOS. A qualified endocrinologist would likely have some good ideas for you to try. My experience has been that gynecologists are either not interested or not qualified in treating the metabolic aspects of PCOS. My appetite leveled out (meaning I was not hungry every 2 hours) and I was finally able to lose weight. PCOS is very much a metabolic condition. I, for one, am doing much better now that I have addressed that part of my PCOS.
posted by FergieBelle at 1:40 PM on July 20, 2012 [1 favorite]
I did have hormonal headaches (I'm certain they weren't migraines as I wouldn't classify them as debilitating, although they were very painful) on Yasmin, but have not had any since Mirena was put in.
If you're not seeing an endocrinologist for your PCOS, I would highly suggest that you do. My understanding is that migraine is a very common co-morbid for women with PCOS. A qualified endocrinologist would likely have some good ideas for you to try. My experience has been that gynecologists are either not interested or not qualified in treating the metabolic aspects of PCOS. My appetite leveled out (meaning I was not hungry every 2 hours) and I was finally able to lose weight. PCOS is very much a metabolic condition. I, for one, am doing much better now that I have addressed that part of my PCOS.
posted by FergieBelle at 1:40 PM on July 20, 2012 [1 favorite]
Best answer: Thirding Mirena -
My symptoms and how it effected me:
I noticed some weird head-effects from the contraceptive pill, so ruled that out for myself.
One of my ovaries is closer to normal, the other, is about 4 times the size it should be, and stereotypically ring-of-pearls follicles all around it (I kind of felt a bit proud, as I remember thinking, oh, they should use that as the picture on wikipedia - it's a lot clearer!). I'm not overweight, so got the impression that wouldn't help.
PCOS usually caused me to have little to no periods with occasional, blindingly painful periods. After going on a plain, copper IUD, with occasional , twice, I had a constant period lasting about 1 month, and 2 months the second time.
The second time, caused me to have anemia, so, I got funded with a Mirena!
The Mirena did not cause any such problems. My period has almost entirely stopped (win!).
From my understanding, it has about a 10th the dose of the lowest dose pill, because it is released directly to your uterus, and... basically doesn't go floating around up to your head.
However, there's some reports on the internet that it could go either way with the Mirena?
For me, it feels like it's helped, and I have not had any excruciatingly painful periods, or long periods, and it isn't affecting me like the pill did.
posted by Elysum at 5:11 PM on July 20, 2012
My symptoms and how it effected me:
I noticed some weird head-effects from the contraceptive pill, so ruled that out for myself.
One of my ovaries is closer to normal, the other, is about 4 times the size it should be, and stereotypically ring-of-pearls follicles all around it (I kind of felt a bit proud, as I remember thinking, oh, they should use that as the picture on wikipedia - it's a lot clearer!). I'm not overweight, so got the impression that wouldn't help.
PCOS usually caused me to have little to no periods with occasional, blindingly painful periods. After going on a plain, copper IUD, with occasional , twice, I had a constant period lasting about 1 month, and 2 months the second time.
The second time, caused me to have anemia, so, I got funded with a Mirena!
The Mirena did not cause any such problems. My period has almost entirely stopped (win!).
From my understanding, it has about a 10th the dose of the lowest dose pill, because it is released directly to your uterus, and... basically doesn't go floating around up to your head.
However, there's some reports on the internet that it could go either way with the Mirena?
For me, it feels like it's helped, and I have not had any excruciatingly painful periods, or long periods, and it isn't affecting me like the pill did.
posted by Elysum at 5:11 PM on July 20, 2012
PCOS here too. You may find that you can come off the BCP and avoid migraines if you manage your PCOS through diet and Metformin. Please see an endocrinologist or (if you can find one who isn't exclusively fertility) a reproductive endocrinologist to manage your care. PCOS isn't just about cystic ovaries, it also increases your risk of cardiovascular problems, diabetes and obesity. Most GYNs just throw BCP at you and call it a day since the BCP regulates the bleeding/non bleeding, they aren't equipped to deal with the metabolic portion of the whole PCOS show.
posted by PorcineWithMe at 6:34 PM on July 20, 2012
posted by PorcineWithMe at 6:34 PM on July 20, 2012
I also have PCOS. I liked Mirena because it was easy, but I preferred the stronger hormonal birth control (even Nuvaring was strong enough) because it controlled the PCOS symptoms like acne and hair growth more so, particularly the acne.
I have also been on metformin, and let me tell you, that can be no cake walk either, there are some nasty GI side effects (although on the plus side, it caused weight loss, but I was not overweight to begin with). Definitely if you want to try this, start with a low dose and increase slowly. Also, metformin did not control my acne or the irregular periods, although I know other people have had different results.
I can't speak to cysts with these treatments, but one consideration might be that even though you had cyst rupture when you were younger, maybe that would be something that changed with age? Just having a lot of follicles doesn't necessarily mean you will get ruptured cysts. I too have >50 follicles on either side, and I've never had a ruptured cyst. Obviously they are extremely painful so I can understand not wanting to risk it, but then again, migraines are pretty miserable too, and if you have a couple of good pain meds lying around in case of emergency, I think it could be worth a try...
posted by treehorn+bunny at 10:25 AM on July 21, 2012
I have also been on metformin, and let me tell you, that can be no cake walk either, there are some nasty GI side effects (although on the plus side, it caused weight loss, but I was not overweight to begin with). Definitely if you want to try this, start with a low dose and increase slowly. Also, metformin did not control my acne or the irregular periods, although I know other people have had different results.
I can't speak to cysts with these treatments, but one consideration might be that even though you had cyst rupture when you were younger, maybe that would be something that changed with age? Just having a lot of follicles doesn't necessarily mean you will get ruptured cysts. I too have >50 follicles on either side, and I've never had a ruptured cyst. Obviously they are extremely painful so I can understand not wanting to risk it, but then again, migraines are pretty miserable too, and if you have a couple of good pain meds lying around in case of emergency, I think it could be worth a try...
posted by treehorn+bunny at 10:25 AM on July 21, 2012
I have PCOS and migraines. Amitryptilene was effective at reducing the frequency of my migraines. The Pill I'm on is Portia (aka Levora).
posted by IndigoRain at 11:45 AM on July 21, 2012
posted by IndigoRain at 11:45 AM on July 21, 2012
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I've found that decent pain meds for the cysts were easier to find than anything that would treat the migraines. I still get migraines, but they are a lot less often and much less severe. YMMV.
posted by TooFewShoes at 12:38 PM on July 20, 2012