Hormonal Migraine and My Hysterectomy
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 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.
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.