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Hormonal Migraine and My Hysterectomy

I am aware that hysterectomy as a means of trying to control migraine is controversial.

Both my pregnancies were horrifying. I had been hoping for migraine relief during pregnancy, since doctors had been dangling that possibility in front of me for years. But of course with my migraine luck, instead of nine months of less pain, I got non-stop agony.

My pregnancies marked my descent into being incapacitated nearly daily.

Migraine worsening post pregnancy

After Zo was born, I started getting horrible, difficult to treat migraines during menstruation and ovulation. I always had to go to the ER both weeks, and was often hospitalized for two to three days. At the time, I was seeing my wonderful primary care physician, Dr. H. She attempted to have me admitted at the University of Michigan’s inpatient program, but somehow I was not quite severe enough for that to be warranted. (Seriously?) She did get me into their system and I saw one of their neurologists, whom I’ve mentioned before because he disregarded the pages of history I presented, administered an ineffective nerve block injection, and suggested Epsom salt baths. (Again: seriously?)

Various treatment plans ensued

Other attempts consisted of many different preventatives, talk therapy, physical therapy, cutting down on acute medication, DHE infusions and home injections, significant dietary changes, additional tests, and a gentle exercise program. I didn’t try Botox again until after the surgery, because Dr. H took me at my word that it hadn’t worked previously. During this time period, she also wrote me a letter to take with me to the ER stating that she’d treated me for years and that she approved of my seeking emergency treatment, listing the IV meds that worked. Unfortunately the ER doctors resented what they interpreted as interference.

Dealing with early perimenopause symptoms

Another problem was that I began experiencing what was apparently early perimenopause. I was suffering from hot flashes, mood swings, and other symptoms indicative of approaching menopause despite the fact that I was only 36. Dr. H felt that the estrogen decrease was causing my increased migraine difficulty and that the hormonal fluctuation during those two weeks of my cycle was wreaking havoc on my sensitive brain.

Finally, during one of my frequent appointments with her, Dr. H said, “Your tubes were tied after [Zo] was born. With your track record of needing to be hospitalized or visit the emergency department every time you ovulate or menstruate, I’m not sure I’ve ever seen such a good candidate for a total hysterectomy, despite your relatively young age.” I was willing to do anything at that point and agreed we should start looking into the surgery. We waited another six months, consulting with my OB/GYN and neurologist and hoping maybe my situation would improve, but it didn’t.

Endometrioris at age 16

At sixteen, I was diagnosed with endometriosis. I had horribly painful and heavy periods and had to take birth control pills, have laparoscopies, and take medications that put me into a menopausal state. Fortunately, I was able to conceive my girls with little difficulty. Dr. H thought that previous diagnosis would help my insurance to cover the surgery, which it did.

All the research I was doing led me to believe that bio-identical oral hormone replacement from a compounding pharmacy would be the way to go. I went and had testing done, and prepared for the surgery. Instead of a big incision, everything was going to be removed trans-vaginally. I began to be able to identify the hormonal migraines; they were “twisty,” like a corkscrew, and just as sharp.

Moving forward with a hysterctomy

I truly believed the hysterectomy / oophorectomy (ovaries removed) would take me back to episodic migraine. That’s what I told my colleagues at work when I took a couple weeks of FMLA.

I picked up my bottle of hormone replacement capsules and had the surgery.

Feeling optimistic post-surgery

When I woke up I had a raging migraine, which I always do with general anesthesia. My post-surgical pain and my migraine were treated with IV meds, and I was given a big fat estrogen patch until they were sure I could tolerate oral medication. I was kept overnight, and John had the downstairs pull-out couch set up so that I wouldn’t have to climb stairs right away.

We arrived home and I still felt optimistic. I rested and slept and began taking my oral hormone replacement. But the very next day, the twisty, pointy migraine was back. It was agony, worse than the weeks prior to my surgery. John and I decided that I would return to the hospital. The migraine was treated in the ER, and I returned home, but I was not to feel truly well for a very long time. And honestly, the twisty head pain seemed almost worse than before. It was emotionally devastating to me, and while physically I recovered extremely quickly from the surgery itself, I was in constant pain from migraines. Instead of the worst pain coming during those two weeks of the month, it was constant.

My migraine situation worsened

We did research. We talked to Dr. H and Dr. T, and my surgeon (who was also my OB/GYN) and the compounding pharmacy. I was unable to return to work. I continued having hot flashes, insomnia and depression that felt separate from my disappointment that the hysterectomy not only didn’t improve my migraine situation but made it worse, and then there was the fact that I was constantly aware of and not happy about the fact that I was missing all the “equipment” that made me female.

Finally, about three months after the surgery, my migraine situation became so severe that I was admitted to the hospital. Since my migraine pain was the main issue, we didn’t really discuss my hormonal situation. It was more important to get my pain under control. Finally, the day I was going to be released, Dr. H’s colleague, “Dr. Man,” stopped in since Dr. H was not on duty. He is a little more traditional than Dr. H was, and as he looked at my file, he seemed puzzled.

Progesterone as a migraine trigger

Why are you taking progesterone?” He asked. I answered that it had seemed that bio-identical hormone replacement was the best option and that Dr. H had agreed. The capsule that I took every day contained not just estrogen, but progesterone and testosterone and a few others that are difficult to pronounce and spell. Dr. Man shook his head. “Progesterone can be a migraine trigger. Because you no longer have your uterus, there is no reason to take progesterone since you don’t have to worry about cancer. With the difficulties you’re having, I’m going to recommend you switch to a basic low dose estradiol patch, to be changed twice weekly.” I was in no position to argue. Clearly, something wasn’t right with my post-surgical regimen.

Switching to estrogen

Dr. Man also put me on Lyrica, about which I was really hesitant because I have never tolerated anticonvulsant medications well, becoming extremely depressed on them. (It didn’t work and I would try one more, Lamictal, before deciding I would never agree to use them again.) However, the difference I felt from stopping the oral hormone replacement was immediate. I knew right away that Dr. Man had been right; I needed simple estrogen and nothing more. The Vivelle Dot is a tiny, very thin, clear plastic patch, and the twice-weekly change allows for less fluctuation. The lower dose is best for migraine sufferers, too. For those not suffering from migraine disease, and maybe some who are, I’m sure oral HRT is a valid choice, but it wasn’t for me.

Finally, relief

After switching to the patch, my twisty migraines stopped altogether. Also, I no longer suffered from intractable migraine every two weeks. However, I was still chronic, which was a tremendous disappointment. Do I regret my hysterectomy? Absolutely not. I needed to get back to a place where I didn’t need hospitalization twice per month, and afterward I also no longer suffered from perimenopausal symptoms, since I was put into a surgical menopause. But my hysterectomy only made sense for me because of the severity of my hormonal migraine, as well as the fact that I’d had children and my tubes were already tied. It was definitely a decision that I did not take lightly. I would recommend serious thought, research, and consultations with multiple professionals for anyone considering it.

Have any of you had hysterectomies for hormonal migraine, or another reason? How were you affected? Feel free to let us know in the comments.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • G1217
    6 months ago

    I’m 33 was diagnosed with premature ovarian failure at 27. This means my hormone levels are in menopause range but I sporadically have a period when my ovaries decide to work. I’ve been on hrt last 6 years still struggling desperately to find a combination that will treat my never ending symptoms. I also have hormonal migraines that have developed in last two years that put me in the ER 2-3 times a year. I’ve tried every preventative medication and failed I’m currently taking Botox and no abortative. Can’t take triptans because they raise my blood pressure and others have failed. I’m really struggling and hoping to one day find right combination. Like the writer progesterone really increases my migraines but I have to take it since I have my uterus.

  • wendy408
    1 year ago

    I had a complete hysterectomy at age 48 for the relief of fibroids and to help headaches. I could not take HRT. I dried up inside like an old prune. The headaches became worse and more frequent. My husband just couldn’t live with me anymore. So here I am 66, divorced and alone, with headaches everyday.

  • Trisha27
    1 year ago

    Dear Elizabeth, I am so sorry you had to go through all of that pain. I am hoping there is light at the end of the tunnel for you! I had endometriosis also and had one ovary, and many growths removed when I was 24. At that time they wanted me to go on a male hormone, Danazol, but I did not. My endo never came back and I had 2 children easily. No problems. I began having migraines related to my period at 36, I asked my neurologist if a hysterectomy would help me but he said that they may get worse70% chance. I opted to not have surgery. I have tried Botox, acupuncture, Topamax, many many, other meds, as well as vitamins, food restrictions, ect…. I finally went through menopause at 57, now I am 59 and I can say my migraines are much better! I just had breast cancer in October with surgery in November ( lumpectomy) They wanted me to go on hormone therapy, but I do not want to rock the boat. I am hoping being checked often since my cancer was small will help. The point is, maybe after a short while, you too will have less migraines now after surgical menopause. I only have 3 or 4 a month which feels wonderful!!! Good luck, God bless.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Trisha,

    Thank you so much for taking the time to respond to my article. I am SO glad that after menopause you have gotten some migraine relief! I myself stopped using my estrogen patch last year and felt better for it, but I understand completely why you are reluctant to rock the boat, although of course you must do whatever you can to stop the return of your cancer, which I am so glad you came through okay. I DID submit to danazol therapy and my horribly OB/GYN kept me on it far too long, which made me quite ill. I wish I had been the self-advocate then that I am today! Good for you for resisting. I also conceived with no problem, thankfully.

    Take good care!
    elizabeth

  • Soteria
    1 year ago

    I’ve had hormone related migraines all my life — one or two a month, and always one the day before my period without fail. They kicked in big time when I went through menopause – killer migraines – 15+ month and I’ve had months where they were daily. I have read that research is linking hormones to CGRP (do a google search) so maybe some of the soon-to-be-available (hopefully) CGRP antibodies will be the answer.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Soteria, I did MUCH better during my CGRP clinical trials! I am very excited about the release of the first one later this year. I hope you also get some good relief at that time! Thanks for your comment! ~elizabeth

  • LyndaL
    1 year ago

    I had cycle related migraines and extremely heavy periods until around 40 yrs. old my OB/GYN recommended a Marina IUD. It was great and solved both issues for 8 years until I developed fibroids. The fibroids grew to tennis ball size and were causing pain so needed to be removed, discussion with my Internal Med., Neurologist & OB/GYN agreed a full hysterectomy would be justified. No hormone replacement was used afterwards due to heart issues I have and risk of stroke. Within 3 months of the surgery I started getting migraines, increasing infrequency over the next 6 months. I tried acupuncture to relieve these since I knew they weren’t cycle related any longer. This seemed to improve the frequency, after the 3rd treatment I started almost daily migraines that included severe light & sound sensitivity. Over the last year we’ve tried Topamax, Depakote & Zanaflex with some improvement in frequency and severity. I’ve burned through all FMLA time and am now on unpaid medical leave with 3 months left to guarantee my job. I just had Botox yeusterday, hoping for a miracle but trying not to get my hopes up.
    I thank the Lord everyday for caring parents who have given me a place to live during this difficult time.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hi Lynda,

    It is so frustrating how migraine is so different in each of us. You’d think that would make researchers want to look into the disease more, wouldn’t you? Sigh. I’m so sorry that you’re struggling so much right now. Was yesterday your first Botox treatment? I wish you all the best and please know we are here for you and you aren’t alone. I’m glad your parents are so supportive. Take good care, elizabeth

  • mrst53
    1 year ago

    I got migraines any time, but before my period they were worse. I went on birth control and they were all the time. When I decided to go off bc, they improved some. When I got pregnant the usual migraines went away, but the hemiplegic started. I too had a total cholecystectomy in my 40’s, because I had fibroid the size of softballs. I thought the migraines would go away or at least get better. How could I tell, when they immediately put me on estrogen pills. This was 20 years ago, so there were fewer options available.
    When I went off the pills, I thought that the headaches would get better, I think my body was just in a headache spiral.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Mrst,

    I know just what you mean about “the headache spiral”! I think of mine as “the intelligence of Medusa.” As though no matter what I do to treat it (I named the disease Medusa) it finds a way around that treatment and returns with a vengeance. So far, it seems like my CGRP clinical trials have had lasting positive effect, but after those were done I too developed hemiplegic migraine and now have permanent numbness and tingling. IT NEVER ENDS. Thank you for reading and for your comment. Take good care!
    ~elizabeth

  • musical-whovian
    1 year ago

    I’m only 24, but I would love to get a hysterectomy. I’ve suffered from very painful periods that are completely all over the place since I first got them when I was 13. I already know I don’t want kids, and besides adoption is always an option if I change my mind. I’m lucky that the depo shot takes away my actual periods but I still sometimes get the awful mood swings and PMS. I’m just over it. I would be no less of a woman without the bits and maybe it would help my chronic migraines as well.

  • Elizabeth Roberts-Zibbel moderator author
    1 year ago

    Hey Musical,

    I totally understand. I was just as sick at 24 as I am now, and struggled with my endometriosis and the idea of kids and adoption and all those things. No matter what treatments we tried, the migraine always returned. The severity I was experiencing before my hyst/ooph did improve, but only after I found the right hormone replacement. It was a complicated mess. I so hope that your health and hormonal situation gets better, and that you have empathetic doctors who take you seriously. We’re very glad you’re here!
    ~elizabeth

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