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    menstrual migraines, endometriosis, lupron, and osteoporosis
    user123 posted:
    I'm 42 now. At 16, I started skipping periods. After an ultrasound, I was diagnosed with polycystic ovaries. I tried different BC pills but either had no periods or spotted constantly. I had a healthy baby at 18, then skipped 2 or 3 months between periods and breasts never dried. I had baby #2 at 21. I had several periods and got the norplant. I went a year and a half without a period and breasts were still leaky. Saw a GYN at 22 and prolactin was 43. MRI and other hormones were normal. Saw an endo and he said I didn't need treatment unless I wanted to get pregnant. Around 26, I started spotting almost daily for a year and a half. I had the Norplant removed and an IUD put in. Had infrequent very light periods for a few years, then years of what I called my "day of discharge", which was an icky dark brown discharge that was too light to require protection and lasted ~24hrs. At 34, I had the IUD removed after DH had a vasectomy. After history, new GYN said untreated prolactin causes other health issues like diabetes and osteoporosis. My prolactin was 63 and then 70. Saw an endo and MRI and all other hormones were normal. I started taking cabergoline and started a normal period after the 2nd dose. I have a very regular 25 day cycle now, though it's still light and lasts between 24 to 48 hrs. Once I started having normal periods, I started having menstrual migraines. They start 7 to 10 days before my period and last 2 or 3 days after I start. I get auras of blurred vision and floaters or heat wave like patterns that float around, as well as photo sensitivity, sinus stuffiness, neck pain and stiffness, and blinding pain behind both eyes. Imitrex helps a great deal, but does not completely stop them. Because of the auras, they won't treat the migraines with hormones because of stroke risk. My dad has also had 3 strokes and both of his parents died of stroke. I've tried numerous preventives such as topamax, frova, verapamil, propanolol, magnesium, and riboflavin. The topamax worked pretty well at 200mgs/day but the side effects, particularly memory and concentration, made me stop. I'm currently taking 200 mgs/day of lamictal and 50 mgs/day of nortriptyline, and still have to take 800mgs motrin, 200 mgs imitrex, and vicodin. This cocktail takes me from staying in bed in a dark room for days to being able to get up and function, but still feel crappy and in pain. ~12 out of 25 days of pain is ridiculous and I'm sick of my life revolving around pain. I've had a lot of other issues like asthma, sleep apnea, back pain/cortisone injections, frequent UTIs and watery diarrhea, pain during sex, and menstrual cramps that double me over in pain. My periods are still fairly light and short, except I pass some blood clots from quarter to plum size. In 2009, I was told I have cysts on both ovaries, and I had an MRI of my spine in May of 2011 that said I have cysts on both ovaries. I saw a new GYN last week and asked him for a hysterectomy to treat the migraines. My mom and grandma had migraines until they went into menopause. My aunt and cousin had migraines until they had hysterectomies. He suggested we try Lupron. If it stops the migraines, we'll consider removing my ovaries. Then when he examined me, he said I have nodules on both ovaries and on my fallopian tubes, and he's sure I have endometriosis. I'm scheduled for a pelvic ultrasound this week. In reading up on Lupron, I see they don't recommend it if you're at risk for osteoporosis. Aside from having hyperprolactinemia for almost 20 years, I've also been taking Nexium for several years. I was started on calcium about a year ago. I had a low Vitamin D test in May, despite being an avid gardener in Calif, so now I'm also taking vit D. Now I'm worried about taking Lupron. I talked to my PCP and will have a bone density done next week. I don't know what my best option is though. Nothing else is working for the migraines.
    Anon_6061 responded:
    Those migraines sound miserable - I sure hope you can find a solution! It's not clear how long you've been on the cabergoline or whether or not your prolactin level is now in the normal range. According to "cabergoline use is usually stopped when prolactin levels are normal for 6 months. It may be given again if symptoms of too much prolactin occur again."

    Yes, Lupron (GnRH agonist) can cause bone loss since it blocks estrogen. There are also other health problems associated with estrogen deficiency. And there are health conditions or risk factors that may be a contraindication for the use of Lupron. The FDA website says "Before receiving GnRH agonists, tell your healthcare professional if you have diabetes, heart disease, a previous heart attack or stroke, or any cardiovascular risk factors like high blood pressure, high cholesterol, or cigarette smoking. These risks are why it's generally recommended that Lupron not be used for more than 6 months.

    And having the ovaries removed is like permanent Lupron. According to this study (as well as a number of others) "estrogen deficiency, resulting from premenopausal or postmenopausal oophorectomy, is associated with higher risks of coronary artery disease, stroke, hip fracture, Parkinsonism, dementia, cognitive impairment, depression, and anxiety."

    Have you seen an endocrinologist (for the prolactinoma) or a neurologist (for the migraines)?

    user123 replied to Anon_6061's response:
    I've seen both endocrinologists and neurologists. My migraines were diagnosed at Stanford's neurology department, and it's been a neurologist prescribing the various migraine meds. My sleep apnea was also diagnosed at Stanford's sleep center.

    I've been on the cabergoline for about 8 yrs and my prolactin is between 1 and 5 when I'm on it. Normal is between 1 and 25. They have tried taking me off of it, but my prolactin went back up to 70, so they put me back on it. I've been told by 2 different endos that I'll probably need to be on it for life.

    I'm having a pelvic ultrasound tomorrow, a bone density on Monday, then see my PCP on Tues to discuss everything.

    I'm hoping someone with experience with Lupron can tell me about their experiences. I need to decide whether the possible benefits to treat both migraines and endometriosis outweigh the risks and side effects or not.
    Anon_6061 responded:
    It's my understanding that the only for sure way to diagnose endometriosis is via laparoscopy and pathology of tissue from the lesions/implants. Could your doctor possibly be seeing evidence of PCOS (which you were diagnosed with many years ago) and mistaking it for endo?

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