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Lifelong chronic migraines and new(ish) loss of libido

Hello All-

I (37f) have had migraines my whole life, which increased in frequency + severity once puberty hit and by the time I was 22 I was having them daily. I'm pretty sure I've tried every drug, treatment and therapy out there, but currently I'm having the best luck with Vyepti infusions every 3 months, plus imitrex tabs/injections 3-4x/week. (It's a vast improvement from before the infusions started). I'm also on gabapentin and methadone, although we've been working on tapering off the methadone for the past year and a half. I also have Fibromyalgia plus Rheumatoid Arthritis that my rheumatologist and I have been struggling to find a treatment plan for, since I'm already immunocompromised, so taking RA drugs (which are mostly immunosuppressives) hasn't gone well and I keep ending up catching every virus or bug that comes along. On top of that, I have endometriosis, and have had a Nexplanon implant for the last 7 years, which keeps me from having periods AND has helped greatly with my migraines.

The problem now, is that I got my 3rd Nexplanon implant put in last October, and for some reason this time around, my libido just absolute shut off within a few days of it going in. I'm demi sexual, so I don't usually have a ton of interest in sex to begin with, but I do engage (or I used to) with my husband on a fairly regular basis (every 2-3 weeks-ish). Instead, I've had absolutely no interest in doing anything with him at all, and can't even get worked up if I try, which is hurting our relationship. It also seems like it's abruptly causing my depression to have skyrocketed, which is making the whole rest of my life suffer as well.

I spoke to a hormone specialist OB/GYN today, who wants me to get the Nexplanon pulled & instead have me go onto progesterone only birth control, but I'm really worried my migraines are going to become severe again, since I don't know if it's the estrogen or progesterone portions of the nexplanon that is helping with that. I just know I can't continue like this.
Side note: so you guys don't get worried: I'm also trying to find a counselor to work with for the depression, since that's making me feel really numb in general, but the working theory is if it's being caused by the implant, then removing it should help. I've been having a hard time finding counselors in my area who accept my insurance, and it's hard to search when you feel so "meh", but I also don't feel like doing any kind of self harm.

Has anyone else had success on progesterone only birth control for migraines? Either pills or the IUD? My cervix is extremely sensitive so I'm worried about getting an IUD, since I've heard SO MANY horror stories, but oral birth control and my frequent migraine-induced-vomiting has some track record issues for me as well.

I know I've got a ton going on physically here, but I'm hoping someone can at least relate to some of it and provide a little input.

Thanks in advance, kind strangers!

  1. Hi dear - We are so glad you're with us and appreciate you sharing some of your journey here. You definitely have a lot going on - and you do a great job of illustrating the way that one condition (and the related meds we take for it) can impact another condition. So many people living with migraine have comorbid conditions they are juggling to treat. It's really tricky. It sounds like you've been wonderfully "on it" in terms of seeking solutions to migraine. The process can be exhausting. Good for you for staying at it and finding a good combination that seems to be bringing you some relief. As to the hormonal stuff- first, as you know, hormones can be hugely triggering for migraine attacks. I understand your trepidation to rock the boat and try new approaches for fear it may worsen the situation. I was given Depo Provera (progestin-only injection of birth control) years ago and it really backfired for me- I had zero sex drive and felt like my skin was crawling to be touched. It drove my attacks up and unfortunately, as it was an injection that lasted 3 months- I was stuck with it until it wore off. I currently take a continuous birth control pill (very low dose estrogen) which seems to be helping or at least not hurting! Taking it continuously means that I rarely have a period.
    I met with a hormone specialist some years ago as I was wanting to get a hysterectomy because my migraine attacks were flaring so badly from my period. I learned that they can tell whether or not progestin or estrogen are your triggers by asking when you get the worst attacks during your cycle. I no longer remember the qualifiers but it was something like if you have your worst pain on the first day it means one thing and if you flare four days later it means another. I was also told that people who have worse migraines during and right after pregnancy are more likely to have a hard time during and after menopause and those who have relief during pregnancy are more likely to have a better time with migraine after menopause. I guess all this to say, it would probably be beneficial for you to bring this information and these questions to a hormone specialist. Perhaps doing so can save you the heartache of experimenting with new approaches that may make things worse.
    I hope this information may prove helpful as you continue along your way. Please keep in touch with us and let us know how you are. With you- Holly ( team).

    1. I never thought that my loss of libido might be related to my migraine! I have never really been all that interested in sex, but now like you I have zero desire. My husband is very understanding, but I'm sure he would prefer that I at least have some interest. I have had migraines since I was 10, and now in my upper 50s they do seem to be getting worse. You have given me something to think about...

      1. hi there. I am sorry that you have experience with this, but you are definitely not alone. It is reassuring that your husband is understanding. That is always helpful. Know that you can share your story or ask a question at anytime, on the site at Hang in there!! (Tonya, contributor).

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